The Pink Tee Shirt

A little frustrated (Sorry, a bit of a rant)

2012-01-29T10:34:00.001-05:00

Last week was a bit frustrating. After I left Bob and De's I went to Dr. B's for an appointment. I actually saw J instead of Dr. B. She put me on a ketogenic diet. But the frustrating thing is that I had blood work done for the appointment, but the lab assistant never turned the blood work over to be tested. So I didn't have the results needed for that appointment. Since I was going to see Dr. C the following morning I decided to ask Dr. B for the results to take to him, and since there was no blood work for Dr. B's appointment, I wouldn't have blood work for Dr. C either. Two wasted appointments. I was not happy. Dr. C was OK with it, but had me go to the lab at St. Joe's to get the needed blood work. While I was waiting for the lab assistant, I googled the ketogenic diet and found out that it can cause hyponatremia and prolong the QT interval. I had second thoughts about doing it, but it is only for one week. I'll bring it up to J when I go in on Tuesday. I called Dr B's office on Thursday hoping the lab results would be found, but the person who answered the phone didn't know anything about it and said that they probably wouldn't know anything until Saturday. If they didn't have the results then I'd need to go in to get the blood work done on Saturday and have another appointment on Tuesday. I had plans to go to a concert in Huntsville on Saturday and I had to give up on that. On Saturday morning I called Dr. B's again and was told that the results had been found, but the samples weren't run until the 26th, twelve days after the blood was drawn. All of my results were high because the blood waited around so long. I had to go get the blood redrawn. So because the lab assistant was incompetent I had two wasted appointments, two extra appointments to go over the blood results, two extra blood draws and I missed the concert. For all that, I got told "Sorry". Just frustrating. The lab should at least take me to lunch, but on the ketogenic diet I can't eat anything anyway. It has been a struggle to stay on the diet.

Now don't you worry your pretty little head.

2012-01-25T00:06:00.000-05:00

The issue has been brought up by e-patient Dave about empowering patients to understand medical cost and help police for fraud. You see, the EOBs that we receive from our insurance agencies include identifying information that is helpful to them but has nothing to help the patient correlate the charge to a specific office visit, doctor, hospital visit, medication, etc. In other words, we are spoon fed the amount we owe for any service long after the service has been rendered. We have no axis to determine if the charge is substantiated or accurate. We can't even call a pharmacy and inquire the cost of a medication. Yet, we are increasingly called upon to help hold down the costs of medical care. Can someone please tell me how we can do this if we are slaves to the process, and not stakeholders? If you want us to participate tear down the dividing wall and let us join in on the information. Quit hiding our records from us with your ambiguous codes and references. Tell us exactly what you are charging us for and tell us up front, not a few months after the fact.

Bob and I talked a lot this weekend.

2012-01-24T00:54:00.000-05:00

In a way it is heady that he respects my views. After all, he is the doctor and I am the patient, but he is the patient now and I am the one who fairly successfully ravaged the storm of cancer. I still feel woefully inadequate to the task, though I would never consider denying my friend of my viewpoint. I want him to watch 50/50. It is a realistic view of life as a cancer patient. And it is better because it doesn't deal with breast cancer. It talks about a rare cancer. I got a common cancer for women over 40, Bob got a common cancer for men over 60. It all sucks. Chemo sucks, there is nothing nice to say about it. WE HATE CANCER!!!!!!!!! just doesn't do it. CANCER SUCKS!!!!!!! doesn't do it either, even though both are true. We do hate that we have cancer and it sucks. But it still doesn't remove the fact that we have cancer. Even when we are in remission and have no overt sign of cancer, we still have cancer. I have no doubt that Bob will go into remission, I really expect that he will die with his disease, not from it, but he will always have to fight it now. I don't welcome anyone to this club.

Orienting Light

2012-01-23T01:11:00.001-05:00

I am at Bob and De's and I love being here. I helped De deep clean the upstairs area of the cabin today and set the beans to soaking. But I won't pretend that even as used to staying here as I am that the darkness is disorienting. De has lights that help. I have plugged in the bathroom light and the light on the stove and the light to the downstairs where Bob and De live is illuminated. It helps. But I have come to understand that Bob needs illumination to the patient side of receiving treatment. He gets the doctor side of it. The patient side of it baffles him. He wants to go to MD Anderson. I think this is a good idea. A second opinion,even though he has a rock star doctor is always a good idea. And Bob's family is in Houston. They do not know about his diagnosis yet. The visit could serve a dual purpose. Still, De is worried that Bob will present as a difficult patient. We should all appear so difficult. The doctor breathes it and I live it. If I had the knowledge to not appear a fool when I questioned that would be lovely. Bob has that knowledge. It does not serve well with cancer. He asks the questions they don't want to answer. He has the knowledge to know if they are hedging the answer. The answer is to shoot strait from the hip with him. And he seems to be processing the answers well. He has a lot of questions about the emotional effects of diagnosis and treatment. I have the answers, but they change person to person. I wish there as a CLL.org like there is a breastcancer.org. He needs support like I needed it.

Blogger Chili Cook-Off

2012-01-21T19:14:00.001-05:00

The Blogger Chili-Cook-Off idea didn't gain much traction, but maybe after yesterday's news that's a better idea. I did buy ingredients to cook some chili when I get to Bob and De's tomorrow. But since it's going to be made from scratch, it will take longer than a day to do. I have to soak those beans. So hopefully on Monday I will have a picture of my friends enjoying a bowl to share with you.

True Love Does

2012-01-21T01:24:00.000-05:00

They called us Mutt and Jeff, we called ourselves David and Jonathan. I never knew who was Mutt or who was Jeff, but it became understood that I was David and she was Jonathan, it wasn't my choice, I would have chosen the other way around. But she said that I was flawed, but pure like David. She was a loyal soldier. I could see her argument. If you wanted one then look for the other. We were always together, in school, at pioneer girls, at church, on the playground. Joined at the hip soul twins, BFF's forever, whatever, De was mine and I was her's. I even defined the spelling of her name. She was Dee or dee until I turned her into De. I love her more than I can tell you, more than there are words to describe. As much as everyone says we are the same, I can love her when I can't love me. She is my BFF for life. And since we both have eternal life that is a very long time.

When I was told I had cancer, she was the first personal call I made. Her response was "What do you need from me, what can I do?" "Drive me to chemo" and she did, all 16 sessions. She sat with me as I had poison, mustard gas, poured into my veins. She took me home and made sure that their was someone available to me.

Today, I was online. Facebook is always up, I got a message. "Did you get my message?" My answer "No, did Stephanie have a good birthday?" Stephanie spent her birthday with her father. She doesn't know the news that I'm going to tell you. She won't know until she and her brother's family return from their holiday. De's next words were shattering..."Bob was diagnosed with leukemia on Thursday."( long area of white space ) "What?" Bob has leukemia. I can't breathe...I must breathe for De....So my response was What? What can I do? Can I clean your house? Can I cook you meals? Can I walk your dogs? What can I do...love talks though actions. Because boy, do I love Bob... but I love his wife even more and that isn't creepy. Sometimes I think that we share a soul if not a spirit. She is me and I am she. I will fight to the death for her. They are facing the awful diagnosis...Bob has leukemia. BOB HAS LEUKEMIA. BOB HAS LEUKEMIA!!!!!!! I take a breath and remember, then I calm myself...Bob has leukemia...I need to find out what he and De need. I need to be flexible for them...Oh God, Bob has leukemia!!!! Please heal him.

Blogger Chili Cook-Off Anyone?

2012-01-20T11:28:00.001-05:00

I was just lurking over at Solitary Diner's and was challenged to a Blogger Chili Cook-Off by Rick. As cold as it everywhere, what a great idea. I'm in, anyone else want to join? Check out both Solitary Diner's and Rick's blogs. Very good reads.

In the center of my soul

2012-01-20T11:04:00.000-05:00

" I believe that tears are a gift from God because they help us live without any facades. We are seldom more real and truthful than in the moments when our tears flow. Those who can cry live more intensively. Those who can cry stand in the middle of life. They stand in the middle of their own pain and in the middle of their own happiness.
However, the uncried tears — they lie deep in the stomach, give us headaches or even depression. Those who swallow their own tears do not do themselves any favors. This is a good piece of advice that is even handed out by health care professionals.
However, if I need to cry my eyes out, I need something more than the good advice that crying is healthy. I need someone who sympathizes and who does not find my tears embarrassing. Someone whom I can cry in front of.
Working in this ministry with its high volume of work, heavy personal load, and the level of poverty we see sometimes causes anxiety and agony as we minister to the poor. Sometimes we feel we need to do more to intervene in the harsh conditions children are living in, but we find the magnitude of the problem is so big. Our interventions for the registered children seem like a drop of fresh water in the sea. How can we not cry sometimes?
Our tears are a gift from God. We should not swallow them; we should let them flow when it is time so that we remain vivid and healthy in body and soul.
Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them. — Psalm 126:6, NIV
Prayer: Father in heaven, even though our hearts may be heavy with grief, we will praise Your holy name. You are an awesome God; You spoke and the world was created. We give You all glory and honor for who You are, and we worship You alone. Amen!"

Courtesy of Compassion International: http://blog.compassion.com/living-authentically-tears/#ixzz1k0tj1uY6 Authored by Lutufyo Kaminyoge

This was the impromptu sermon I got this morning when I went to Compassion International's site to send a birthday gift to Estefani, and let me tell you it was spot on. Yesterday I read a post from a blogger that I enjoy. She wrote of a gift that her parents had given her. It was beautiful, and I wish that I could say that I too had given my children that gift. But I fear that I didn't. I fear I didn't because the gift is something that I don't possess, and the lack of it is one of the greatest sources of pain in my life. While I was joyful for her and glad that she appreciates the true value of the gift, it highlighted that ache in the center of my soul. It left me in tears and crying out to God. Then afterwards I felt ashamed that I cry at God for not having that gift and I don't appreciate the many gifts that He has blessed me with. No wonder I don't have that, I don't appreciate what I do have. But this is the rend, the tear, the wound that breeds all my depression and insecurity. So this morning while I was sending a gift, God sent one to me. He gave me the words above to let me know that my tears are not evil, but a way to keep myself healthy.

If you are not familiar with Compassion International, please go over to www.compassion.com and check this wonderful charity out, and consider sponsoring a child in need.

The Old Neighborhood

2012-01-14T21:07:00.000-05:00

Lizzie needed her rain boots that she left at home in her closet. She also needed a casserole for a dish she wants to try. I needed to see her so I arranged to pick her up after her shift at work. The restaurant she works at is in the neighborhood that I grew up in. Being in a major metropolitan area, it really looks very different than when I was a teenager here. With both my parents having been long deceased, I almost never come here. But as much as the surface has changed, the structure remains the same. Driving down North Druid Hills road I passed a homeless guy standing on a corner. It was Bud. It made me sad to see him. When we were growing up Bud was a sweet and intelligent child, blonde hair and huge blue eyes. He looked like the kids you would see in advertisements. He knew the names of the constellations and where to find them in the sky during which month. He knew the phases of the moon and was hugely interested in eclipses and meteor showers. He read Richards Almanac and the Whole Earth Catalog and National Geographic and stories like "My Side of the Mountain" and "Rin Tin Tin". He had visited Costa Rico and Bolivia, and had climbed pyramids. He was probably the most interesting kid that I knew. We remained good friends until around 9th grade when Bud began to do strange things. He took up the habit of chirping like a cricket at the most annoying times. He would just suddenly pinch people for no reason and began talking about strange topics. It didn't take long for him to loose most of his friends. He was a good deal smarter than I was, so we weren't in any of the same classes. It was easy to move on to other friends. He graduated with honors, but his mother declined making him the Valedictorian for the class. She said that he couldn't stand the pressure. Looking back on it, she was probably right. He got into Georgia Tech, but by the middle of the first semester of college, I heard he'd had a mental break and was in the hospital. Thinking about it now, he probably was suffering from Schizophrenia or Tourettes or something. We knew very little about mental illness back then, as teenagers we wouldn't have known that our friend was sick, not seeking attention in idiot ways. So now when I come back to Brookhaven, I see him wandering the streets. He chooses to be homeless, it's not that he has to be. His mother still has the house he grew up in. She will let him in, but in his sick way of thinking, he prefers the street. I saw him when I was walking the 3Day. I tried to approach him, but he panicked. It was clear that he didn't want contact with anyone, I'd done a bad thing. So now when I see him I try to not make eye contact. A few of our other classmates have seen him too. They say that he talks to no one. They say that his mother occasionally talks him into going into the hospital, but he never stays. After yesterday, seeing him there on the corner was like a punch in the stomach. How do we all get were we are? Is it that we didn't try? Do we really make our own life or do we just drift in the current of life?

Snow

2012-01-13T17:08:00.000-05:00

Not the bad kind that wants to accumulate on the roads and stay around forever. The good kind, gently falling and melting as soon as it hits. This is the kind of snow that I like. I enjoyed my morning commute watching it as I was driving in. It made me fell still and peaceful. So I have spent the morning in a reflective mood, thinking about small things. The din the morning radio show host were making over who were better drivers and parental melt downs. Had me wondering what difference it made. I know they had to have something to talk about, but sometimes I'd like to hear about something more than fluff. All parents melt down eventually. If June Cleaver had been a real person she would have had moments on that show where she wasn't all cool grace wrapped up in pearls and heels. The dirty little secret is that all parents fail. At it's best, parenthood is a tutorial in asking for forgiveness and hoping and praying that we are not going to fail so often that it is the only reaction our children remember.

With this backdrop I pulled into the parking garage and realized that there were 7 text messages on my phone. Alarmed at this, I stopped and read them immediately. The first one from a friend that I haven't seen in a while. It said "By this afternoon the divorce should be final." Whaaaaat? I didn't know that the marriage was in trouble. Apparently neither did any of our mutual friends, the other six texts were different friends asking if I knew anything about this. They were all as blindsided by the news as I was.

I got into the building and headed upstairs to my cube. Opening my email box I had a message from one of the breast cancer sisters. "They took Becky to hospice today. They don't think she has much time." Hot tears ran down my face. I knew that she had been sick. I knew the mets were in a lot of places, but still it is so hard to face...again.

Back downstairs in the cafeteria for breakfast, I'm sitting at the table and David from strategic accounts approaches me. I have been in a few meetings with him and emailed things back and forth, but I don't know him well. He wanted to talk to me. His wife was diagnosed on Monday. Poor girl, they called and gave her the news on her cell phone while she was driving her daughter to cheer practice. Her cancer is very similar to mine, nowhere near as advanced, but er/pr-, her2nue strongly positive, lymph node involvement. She's going to the same oncology and surgical groups that I go to, different doctors in that group. I told him that her oncologist is considered the breast cancer expert in the southeast, and that a lot of the surgeons patients like her more than my surgeon. They have her on a good schedule. He was concerned because they want to do chemo before surgery and he wants the tumor gone. I explain the reasoning, but I don't think he was convinced. We talked for way longer than my break should have been. It was hard to hold the tears back after hearing about Becky. Wasn't she stage 2 when she was diagnosed? I can't remember. I don't have promises to give David, but he sees me as the promise. I am here talking to him eight years after my diagnosis. I told him I was really sorry, that I'd like to talk to his wife and I gave him my cell number for her to call. I don't know what I will say, but I know that I can't be silent.

I sat quietly in my cube all morning, glad that there wasn't much to be done. I can barely focus on the Excel workbook open on my screen. Stormy stopped by and asked if I would like to go to lunch, but before we could leave, she got pulled into an impromptu meeting. I walked back down to the cafeteria, but the offerings didn't appeal to me. Instead I went to Sweet Tomatoes and had chili and salad. The woman in the booth diagonal to the table I'm at is bald and obviously weak. I don't know what kind of cancer she has, but I do know how she feels. Tears for Becky slide down my cheek. I am embarrassed by my lack of emotional control. I feel overwhelmed by all this.

Back in my cube I get a cry for help from Evelyn. She needs to create a survey and doesn't know the software. I have used it, but it was three years ago. I don't know it well. We spend an hour figuring it out and getting the survey on the intranet. She and I go back to the cafeteria for break. While getting the napkins and silverware I notice Julia sitting at one to the tables in the darkened area. She looked very bad. She is usually all smiles and cheer, but today there is definitely something wrong. Evelyn and I go and sit with her. She told me that she had an MRI on Monday and they found something on her spleen. She's going on the 24th to get a biopsy. She's scared and she should be. The type of lymphoma that she had can easily spread to the spleen.

Now I'm sitting here and the contemplations that I had in the morning driving in seem like trivial popcorn compared to the news the day dumped on me. I want to love these people, to comfort them. But I feel so incredibly incapable of the task. I have nothing to give them other than my prayers and concern. Some times I wonder why we fight so hard to cling to life. I guess the only thing we can do is to be there for each other.

I have no excuse

2012-01-07T19:52:00.001-05:00

I haven't been posting much and there really is no reason why other than I'm just bored with the sound of my own voice. I have been reading many blogs and even leaving a few comments, but just not posting my thoughts here.

The holidays came and went. They really were pretty good. Lizzie and I spent Thanksgiving together. We spent Christmas with Matt and Nina and the boys.

Clifton

Tony

We had a pretty had a good time. Cocoa Beach was warm and that was very different than the snow we had last year. I also missed the candlelight service and Beverly's party, but there will be many years for that. Tony was in a cast after breaking his leg in a playground accident. So there was no going to the beach. But we did have fun playing putt putt with Clifton.

Jack

We spent the new year with Tim and Jenn and Jack. We went for dinner and then left the next afternoon. Jack is quite a funny fellow. If I could figure out how to upload Youtube videos, I would upload this one for you but here is a link. He is so amazingly like his father that it is watching the same child grow up in two generations. We came back so early because Lizzie wanted to party with her friends and I needed to be on for the video ministry on Sunday. I'm actually grateful that I did come back because I was exhausted and working on a good size head cold. Having Monday off work allowed me to sleep most of it off before returning to work.

Work has been interesting because on returning from the holidays I have found out that two of my very good friends are retiring and I strongly suspect that a third will before the end of the year. While I'm glad for them, the lunch table is suddenly growing very small.

I had two doctor appointments before Christmas. The first was with my oncologist. Everything looked good. Call after Christmas for the CA 27-29 results. Come back in six months. Only when I called back I found out that for some reason the CA 27-29 hadn't been run. We decided to let it ride until June when I go back in. Having made that decision, I am now nervous about it. Silly, I know. Most oncologists don't even run the test unless there is active tumor they are watching. Still, now it feels like I'm not being monitored. I also saw my sleep specialist. He was thrilled with the weight loss and cautioned me that we might need to redo the titration study because of it. He explained that sleep apnea isn't a disease of obesity, but obesity greatly worsens and complicates it. He said that if I stop getting the amazing results that I have gotten with my CPAP to call and we can redo the study, which is fine because my insurance will pay for me to have as many as are necessary. They limit mild and moderate sleep apnea, but I fall well below any of the standards for that.

I will have my first appointment of the year at Dr. B's and then I will see Dr. Cn later this month. It's kind of weird. As much as I didn't want to go on FMLA, it is rather empowering when I tell my supervisor about needing time off. Before I was almost apologetic about it. When I told her last week, I could see the hackles raise, but then she had to push it back. She legally can't say or do a thing about the appointments. In all reality there is no reason to object. I do go to a lot of appointments, but I always work a full week or use discretionary time to make it up. It's just a control issue to spaz out about it.

I took Lizzie back to the dorm today. She was glad to get back. I remember how she feels. I used to hate breaks when I was in college. I would go home for a month or more and it felt like my life was on hold. All of my friends and family would be going to work and doing what they do and I was just hanging out waiting for the next semester to begin. We went by the Fiesta Farmers Market and picked up food for her. She has enough for about a month, and we ate at Waffle House on campus, then it was time for me to leave a very happy young woman.

So, this is where I am at. And even though it is a bit of a ramble, it feels good to be caught up.

Let them eat cake

2011-12-18T18:52:00.000-05:00

After church today, Lizzie and I went to McAlister's for chili. Sitting there I was staring at the above point of purchase material. Yeah, why can't I skip the meal and eat cake? There are so many answers to this question it doesn't even make sense that I'm asking it. Things like sugars and simple carbohydrates kick my insulin into overdrive and then my cells don't use it to it makes my liver over express triglycerides, and I'm sure that I'm not expressing that one right. The bottom line is that I just can't eat cake. But that is just the point with me. I would have gladly given up the chili, and everything else I eat up for a piece of that cake. But then it would have flooded my blood with insulin that wouldn't have been used and caused extreme hunger which would result in a binge of cake. If only my body would cooperate with itself. Doesn't that cake look awesome?

Diabetes, I do not understand you!

2011-12-15T19:57:00.000-05:00

What is going on with these numbers lately? On Monday I had an A1c of 5.2. On Tuesday I have a reading of 212 after dinner. This morning I have a fasting reading of 66. For some diabetics these are outrageous numbers, but for me they are off the charts. And since I haven't been eating any differently than normal, I just don't understand this. I wonder if this marks the end of the honeymoon that I keep hearing about.

Walk of Shame, Diabetes Style

2011-12-13T22:25:00.000-05:00

Need I say anything else? I've had 2 doctors commend me this week for my tight A1c control over a full year. I guess it made me a little to heady.

Slip Sliding Away

2011-12-10T14:48:00.000-05:00

"Slip sliding away. Slip sliding away. You know the nearer your destination, the more you're slip sliding away." Simon and Garfunkle

For the past couple of years, I have felt like my daughter has been slipping away from me. It has been a heavy stone in my soul, often leaving me feeling terribly alone. It started in her senior year of high school. She did a good job of pushing all but a few close friends away. It was her way of preparing to leave home and become an adult. It was a difficult time for both of us. At times she reminded me of her two year old self, stamping her food and declaring "me do it myself!" What could I do. I have to allow her to make her own mistakes. But I knew that she was making a mistake. She got her heart set on attending an out of state school. She turned down two or three full ride scholarships to do it. Then last year that dream washed away when the student loans were slow to be received by the university and she was sent home. She was hurt and angry and she used that anger to further push me away. And she made a few more regrettable mistakes. It's been hard to watch. But not everything she has done has been a mistake. She did decide to get back on track at school. She applied to one of the universities that I had begged her to consider. She's there now and seems to finally have found her footing. But the nice thing is that she has started to reverse the sliding away. It started when she asked if we could get together once a week for dinner. That was unexpected. It was down right nice. Then she wanted to come to the Fall Festival at church. Everyone was glad to see her. After that she spent most of Thanksgiving weekend with me, and that was a gift. Then last weekend she came home for the family tradition of going to the local parades and the Bethlehem Walk with me. That was a great weekend. Yesterday she asked if she could go to the church Ministry Leaders Dinner with me. She has always refused to go with me to that. I am excited. In two weeks we will meet up with Matt and Nina and the boys for Christmas. And the following weekend we will spend some time at Tim and Jenn's for the New Year. Suddenly I seem to have lost that stone. I'm so glad it's gone.

Handedness

2011-12-06T10:56:00.000-05:00

The Wall Street Journal has an article today about left handed people being crazy. It was obviously written by a right handed person. All I can say is GET OVER IT. The biggest difference between left handed people and right handed people is the hand that is used to pick up the pen.

Sorry for the Silence

2011-11-30T12:30:00.000-05:00

It's been a while since I blogged and I don't really have a very good excuse. Mostly my online time has been filled with working on the genealogy project so Lizzie would have it available for her Human Genetics project. I got everything that she needed ready for her to have time to prepare her presentation. We worked on it together over Thanksgiving weekend.

Speaking of Thanksgiving weekend, we had a lovely time. We checked into the Homewood Suites hotel on Wednesday night and were greeted with a complimentary Thanksgiving meal for dinner. It definitely wasn't home cooked, but very tasty. And our room was lovely. It was a one bedroom suite with a separate living area and kitchenette. Very, very nice and comfortable. As a bonus they served a hot breakfast every morning and a hot dinner every evening, and the rate I paid for this was only $56 a night. What a deal. I will be staying with them again and soon. Lizzie and I slept in on Thursday, but not so late as to miss their breakfast. Then we went back to our suite to watch Macy's parade on TV and of course the dog show for Lizzie. She has been fascinated by that since she was 2 years old. After a morning of television gluttony we headed out to Buca Beppo for an Italian feast of antipasto salad, baked rigatoni and pumpkin cheesecake. It was absolutely delicious. Then we went to the theater and saw The Muppet Movie. So Thanksgiving was filled with balloons, puppies and muppets. What a day. We spent the evening resting in the room and got up to hit the mall at 11:00 for black Friday people watching. It was seriously hysterical. I decided that black Friday shoppers, unlike what I had imagined, are for the most part too young to have graduated from high school and decidedly male. We got back to the room around 3:30 am and boy did I sleep. I didn't wake up until almost 4:00 pm. Lizzie had gone to breakfast alone and brought me back a plate. For lunch she had the antipasto salad and some of the rigatoni. We did some more shopping and worked on her genetics project for a while, but I was too tired to do much of anything. The next morning I took her to her dorm and spent Saturday alone watching Christmas movies. I didn't go home until Sunday evening and I was surprised that I was home alone for quite a while. Ken was out at a friends house and Cheryl didn't come home until late that night.

Now for the bad part of the weekend, part of the reason that I was needing so much sleep was that about a week before this I was hit with a flare-up of IBS and Orthostatic Hypotension. Both IBS and Orthostatic Hypotension are part of a group of conditions that make up Dysautonomia. Dysautonomia is an imbalance in the sympathetic and parasympathetic nervous systems that regulate the automatic functions of the body. Dr. K officially diagnosed me with Neurally Mediated Cardiogenic Dysautonomia with Orthostatic Hypotension in 2005 when he did the complete cardiac work-up after I fainted driving my car. But being an electrophysiologist he didn't mention the other conditions that are caused by Dysautonomia, like IBS. IBS I generally figured out on my own. I can go months or years and not have a problem with any of these, and then something happens to throw things out of balance and I'm having trouble with one or more of them. When I have a flare, I feel as if the plug on my energy level has been pulled, and I have trouble regulating my body temperature. I'm sweating or having chills when I am in a comfortable room. All of this is a nuisance, but other than it's over dramatic presentation, it is unlikely to be harmful. The only thing I can do is treat the symptoms, BRAT diet and probiotics for IBS and salt and fluids for OH. It's just that I hate that I missed so much time on Thanksgiving weekend with Lizzie because I was so tired. Here's to hoping that this resolves itself soon.

The other issue that I've been concerned about over the past few weeks is that while showering in the hotel, because the light was so much better than what I have at home I noticed that a small area of fat necrosis in the scar area of my reconstructed breast has started growing. It has me wondering if it is really fat necrosis. Again, if I left it completely alone, and it is cancer, it could get ugly. But as long as I get it looked into, treatment is really simple. I have an appointment after the holidays with Dr. SH and I don't think it's necessary to try to move the appointment ahead. It just kind of bugs me that it's there again. Even if she still thinks that it's still fat necrosis, I think I'm going to ask her to remove it. At the size it is now, it would be a small procedure that could be closed with a stitch and I wouldn't even need to be anesthetized. I would rather that it be gone and not worried about.

So, health wise, I'm being pecked to death by ducks. But otherwise, I'm having a nice holiday season.

Almost there

2011-11-23T14:10:00.000-05:00

Every year in the fall I carry around two calendars. The reason: I start collecting appointments and I need to write them down somewhere or I will simply forget to go. This one really threatens to be forgotten. How am I supposed to remember the appointment in August that was made a year ago if I can't write it down somewhere where I will look at it? In my new calendar, I already have nine scheduled appointments with reminders to schedule others. This is the only way I know how to keep it organized. But it makes me a little crazy when I'm juggling two calendars at the end of every year. I have tried two year calendars, but that only postpones the agony. At some point I still end up with two calendars. I have also tried to use the electronic calendar in my cell phone, but I don't have a constant visual of it. The days I have appointments are merely boldend but with no explanation until the instant reminder is set to go off. That makes for some sad last minute planning. And it leaves me nowhere to tuck things like appointment cards, lab requests and updated prescriptions. So, here I am in the two calendar time of the year thinking about how great it will be to ditch the old calendar in a few days.

Happy Thanksgiving Y'all

2011-11-22T10:01:00.000-05:00

I was on the phone with Sophie, a co-worker in France. Because of the up-coming Olympic Games in London I talk to her quite a bit. She's wonderful to work with and I wish I could meet her face to face. So as we were concluding our conversation I said to her "Have a wonderful Thanksgiving". Then it struck me that she probably had no idea what I was talking about. Thanksgiving is a unique holiday to the United States. In my family we were always encouraged to contemplate on what we were thankful to God for, I grew up with the idea that it is a religious holiday. But that perception is wrong. It is actually a governmental holiday, a day that was supposedly set aside to say thank you to the native Americans who helped the pilgrims survive. In a day and time where separation of church and state (which is not in the constitution) is more appreciated than freedom of speech (which is), I find it ironic that one of the most celebrated governmental holidays piggy backs as a religious one. So have a wonderful Thanksgiving y'all. Think about all the things in your life that you are absolutely grateful for.

Karaoke tonight

2011-11-20T00:56:00.001-05:00

Not a high quality picture, but still a great picture. It shows the beautifulness of the Karaoke group that we found. It is a picture of my daughter Lizzie and Jay. Jay is an obese 30-40 something year old. Mollie is a sometimes anorexic teen that understands his worth and is thrilled to see him. I love our karaoke group. As we were coming in Abby saw us and ran up to hug me. I'm like a surrogate grandmother to her. I love her. But then, karaoke is not fun to me unless Lizzie is there. But the truth is that I miss the group from high school. When Lizzie was in high school the group included the Scrivens and the Branums. The Scrivens moved to Dallas and the Branums got divorced and quit karaoke. The teens went to college and now if I go, I will be mostly by myself. Not so fun. I'm sure I could adjust, but I'm not sure I want to expend the effort.

Conflict Conflicted

2011-11-17T00:47:00.000-05:00

I got a Facebook message from my niece. She wanted to know why her aunt, my sister, hates her. She told me of something despicable that my sister had done to her that amounted to online bullying. I was mortified. My sister can be down right mean and expect everyone to be OK with it. I wasn't OK. After spending the day trying to let my niece know that she should just so totally disavow the actions of my sister and not let them tear into her fragile self esteem, I did something stupid. In the same cyber-bullying way I let my sister know that what she had done was wrong. Well, to tell you the truth my sister, who doesn't ever see herself as being wrong, only wronged, decided that I was wrong to "attack" her. I ignored her first phone call because I knew that she'd be angry and spewing. I wanted to give the situation some time to diffuse. She called me a week later and I took the call. I explained to her that what she'd done was mean and had deeply hurt my niece. She tried to lie to me and tell me that she hadn't done it, but it is obvious that she did, and this is always her first defense mechanism. I didn't buy it. I pressed her and she fell back on her second defense mechanism which is to become a profane name caller...real mature, I know. My therapist calls it emotional backmail. She was trying to dissolve my high ground by making me seem less. She is very good at it. This time I took my therapists advice and cut her off. I sternly told her that the conversation was over. The truth is that I am unwilling to hold another one with her. I know that as a Christian I am supposed to forgive as Christ forgave me, but does that mean that I have to continue to expose myself to her toxicity. We all cut one of our brothers out of our lives because he was so very toxic no one was able to withstand his toxicity. My sisters is minor compared to his, but she tears down my self esteem with her meanness. I really do not want this to be in my life any more. It's not that I don't want her in my life. I just don't want her meanness and blackmail in my life. But cutting her out of my life feels like unforgiveness to me. In Christ we are called to forgive, and this seems like the antithesis. I am conflicted.

A word to the wise

2011-11-15T11:42:00.000-05:00

"Watch your thoughts, they become words.
Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become your character.
Watch your character, it becomes your destiny."

Unknown

If you wouldn't say it to a friend or a co-worker, or even a stranger, you should never ever consider saying it to a loved one. Familialarity is no excuse for verbal or emotional abuse. Just sayin'...

Monkeying Around

2011-11-12T18:50:00.000-05:00

I know this doesn't count as writing a post. But I'm kind of busy today.

Thank You Veterans

2011-11-11T15:26:00.001-05:00

For everything you do and everything you have sacrificed, we are grateful.

Happy Veterans Day

Dr. B Update

2011-11-10T15:43:00.000-05:00

I saw Dr. B on Tuesday. She has been pleased with my progress, but thinks that after a year I need a short break from strict diets. So for the time being I can eat what I want. The odd thing is that I didn't immediately get the urge to eat a bag of Dove Chocolates. The worst I've done is Grilled Cheese on low carb bread. I just have a huge desire not to undo the good that I have done over the past year. So I'm sitting here eating crudites and cheese and feel like I'm cheating because I'm not pigging out on the pizza.

I'm getting really excited about Thanksgiving, mainly because I have almost nothing going on. I just sent Matt a message to see if he wants to hang out with me that weekend. Otherwise Lizzie and I are going to celebrate together on Friday, because she has to work on Thursday. It makes me wonder who eats at Hooters on Thanksgiving. So if I'm alone I will do all the geeky things that drive my kids crazy, like watch Macy's Parade and marathon Christmas movies. I will be going to Dadeville to spend time with Tim and Jack this weekend, so that will be my celebration with him. Matt says that he'll be up in Maine, so I guess I won't be hanging with him. Down time won't be bad.

Invite the Devil

2011-11-09T12:39:00.000-05:00

I'm taking yesterday as one of my miss days for November. It was just not a great day for me. I had planned on writing a follow-up to Monday Monday. It seems that if you invite the devil, he shows up. I arrived home Monday night to find a letter from Dr. S. It told me that his NP was changing clinic days and that my appointment had been rescheduled for 12/28. That is a big problem for me. I dislike and distrust his NP. She doesn't answer questions, blows off my concerns and doesn't get back with me regarding my test results. When I made the appointment I asked specifically to have an appointment with Dr. S, not with C. The scheduler assured me that my appointment would be with Dr. S. Yesterday I called and asked why my appointment with Dr. S had been changed to C and then rescheduled. D, who answered the phone told me that C's clinic day had been changed, which I already knew, but not why my appointment had been changed to C. After about ten minutes of going around and around with it, she finally gave me an appointment with Dr. S on the same day that it was originally scheduled, but not the same time. I'm almost certain that when I get there my appointment will be with someone else other than Dr. S. So, less than a day after sending HR the email designating my appointment times, it had changed. I am beginning to wonder about the purpose of making appointments at all.

Monday, Monday

2011-11-07T17:19:00.002-05:00

"Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it."

Now this is the perfect prompt for today. When I originally read it last night I was thinking about coming up with something on my own. But after today, it's looking pretty spot on. It started this morning when I got this e-mail:

____________________________________________From: M Sent: Monday, November 07, 2011 11:26 AMTo: EmmyCc: N Subject: Request for FMLA Approved - EmmyYou submitted an FMLA medical certification for intermittent time off work for Emmy. Your medical certification was approved and an approval letter has been mailed to you. You are eligible for up to twelve weeks of FMLA leave for each calendar year, at this time starting November 4, 2011 through December 31, 2012. The estimated time off for FMLA is up to two times every three months, five days per episode.FMLA Requirements:So that there is the least disruption to the workplace you are expected to provide your management team with a 30-day notice of your FMLA leave time off work if your leave is foreseeable, or as soon as you become aware. Please also forward us a copy of your upcoming appointments for our records.
In addition you are expected to plan your scheduled appointments before your shift start time, during lunch or at the end of your work shift. However, we do understand that there may be minimal notice with some symptoms related to the serious health conditions noted on your medical certifications.
No other medical documentation is required at this time. For example, we do not need medical documentation to substantiate your medical appointments. However, we will seek clarification from your health services provider if there is a pattern of absenteeism not previously noted on your medical certifications on file.
Time Card Management:If you miss a portion of the day for FMLA purposes, then please enter the hours you worked and discretionary time (accrued vacation time if no discretionary remaining) for the FMLA time off for that day. In addition please note in the comments section the amount of time off that day for the FMLA related reason. If you miss the entire day from work and have exhausted both your discretionary and vacation time, then please code your timecard as FMLA - "36".
Please use the attached worksheet to keep track of your FMLA time. Your management will also track your time off work. At the end of each month your management will forward us a copy of the worksheet for review. Please let me know if you have questions or need to discuss the above information is detail. In addition you are expected to plan your scheduled appointments before your shift start time, during lunch or at the end of your work shift. However, we do understand that there may be minimal notice with some symptoms related to the serious health conditions noted on your medical certifications.No other medical documentation is required at this time. For example, we do not need medical documentation to substantiate your medical appointments. However, we will seek clarification from your health services provider if there is a pattern of absenteeism not previously noted on your medical certifications on file.

I took out the names and added a highlight to point out to you the part that I'm going to talk about. I had to pull out my new calendar and come up with a list of expected appointments. I sent M this:

From: Emmy
Sent: Monday, November 07, 2011 11:57 AMTo: MCc: NSubject: RE: Request for FMLA Approved - Emmy

M:
At present I have the following medical appointments pending:

Thursday Dec. 22, 2011 12:30 – 2:30
Friday Dec. 23, 2011 1:00 – 2:30
2 unscheduled around Jan. 12, 2012
Friday March 2, 2012 8:30 – 10:00
Tuesday April 24, 2012 8:30 – 10:00
2 unscheduled around May 15, 2012
Unscheduled around June 24, 2012
3 unscheduled appointments around July 16, 2012
Unscheduled around Aug. 2, 2012
Monday Aug. 20, 2012 9:30 – 11:00
Unscheduled around Sept. 12, 2012
Unscheduled around Oct. 24, 2012
2 Unscheduled around Dec. 19, 2012

These are regularly scheduled follow-up appointments. If I have a medical issue that would require added attention then some of the follow-up appointments may be scheduled more frequently. In addition to the appointments listed above, I have weekly physical therapy sessions that take place before work on Tuesday mornings and a bi-monthly appointment that either takes place after hours on Tuesdays or Saturday mornings. From time to time a few of these appointments will be rescheduled either by the doctor or me due to scheduling conflicts. I do generally try to get the first available morning appointment or one that takes place near lunch. That is not always possible.

I hate that I made out that list. I know that I see doctors often, but this gave me a number. 44 visits for regularly scheduled appointments and 52 physical therapy sessions. 96 office visits (the equivalent of one every 3.8 days) every year and this is if I don't get sick. If I do get sick the number goes higher and I haven't had a year in the last 8 that I haven't faced some sort of medical situation. This exercise in futility has left me really bummed out. No wonder I spend so much time trying to figure out which medical expert I can write off. Yeah, I'm kind of burned out on my health right now.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Sorry about the formatting. Blogger changed it when it published and I can't undo it.
Emmy

Who is your family?

2011-11-06T16:05:00.000-05:00

"If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there?"
Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?"

It's an interesting prompt, and I will use it on one of the days when I'm not so excited about the prompt for the day. Today has had a lot of things going on that I need to process. Daylight Savings Time has thrown me off a bit and I woke up early. I had time to lurk the web and went to Facebook. There was a message from my niece that said:

"How are you doing. It is awesome that you need new clothes. I am so proud of you. I have a question you may not know the answer too. Why does Brenda not like me? She wouldn't talk to me at Steve's funeral and she just asked to be my friend on facebook then unfriended me. I am just curious. I hope you enjoy the rest of your week end. ILY"

The question was the equivalent of asking "Hey, did you notice the elephant in the room?" My sister blames my niece for poor decisions that her parents made. That and the fact that we all knew that Cindy wasn't a blood relative, but that was another elephant. I personally am tired of all the elephants my family ignores so I decided to out it. I gave Cindy the awful truthful answer emphasizing that she is not responsible or to blame for any of this. It wasn't surprising to me that I was only confirming what Cindy already knew. My sister can be a royal bitch. I hate it.

So with this background, I went to church. These are the people that I truly appreciate as family. Only one of them is actually related to me, and that is a distant relationship. But we care about and for each other. And we care about people around us. It doesn't matter that we aren't blood, we treat each other as family. I sat in the middle of this thinking about Cindy and Brenda and realized that it is better to just choose your family sometimes.

After church I went to a restaurant and there was a large multi-generational family sitting near me. As I watched them I realized that I really miss this. And it's hard that I don't have this, and it's attitudes like Brenda's and actions like Ex's that I don't have it, can't have it. So I have been trying to work through my anger at them and my sadness all afternoon. Why does my family have to peck each other to death?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Five things

2011-11-05T15:31:00.004-04:00

"5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how."

The most important thing that changed my life for the better happened 2000 years before I was born. Jesus of Nazareth died on a cross and paid for all my sins. On April 14, 1971 I sat in a decorated garage and understood for the first time what that meant. That night my spirit was born again.

The next thing that happened that truly changed my life for the better was the birth of my two sons and my daughter. Being a mother to them was one of the things in the world that I truly desired. Conversely, one of the things that changed my life for the worse was falling in love and marrying their father.

The next thing on the list for the good would be finding Woodstock Community Church. They are a group of wonderfully caring people who truly understand being the hands, feet and heart of Christ.

Working at UPS has been a blessing. Even though there have been some really hard people to work with, that has been offset by the majority of amazing, talented and caring friends I have made there. And when I was sick, I had wonderful insurance to use.

The fifth thing that has changed my life for the better has been the births of my three grandsons. Being a grandmother is the best thing in the world.

I really don't want to dwell on the things that changed my life for the worst. I'm having a bit of trouble with standing on the edge of depression today, and I just don't want to give the devil opportunity.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Dove Chocolate Advice for today

2011-11-04T17:35:00.000-04:00

"Steal 5 minutes for yourself today"

I just love Dove Chocolates. I love that they make them sugar free even better.

Frustrating Friday

2011-11-04T13:45:00.001-04:00

The Wego Health prompt for today is:

"What happens after you press “publish.” Write about your post-blog-writing process. Do you immediately tweet a link? Email it to everyone? Re-read it for spelling errors?"

Pretty bland really. After I hit publish I usually go to blogger's dashboard and read what my favorites have written. Then after a bunch of people have read the post I get around to reading in and find all the editing errors that I have made.

But today is frustrating me beyond measure. A few weeks ago some team members made some special requests regarding the catering order for our Friday morning status update meeting. The only thing that makes that meeting bearable is that we get breakfast, well they get breakfast anyway. Breakfast is bagels, muffins and fruit. None of it work with my diet. So, I sent a new request into Sodexho to change the order requesting to up the order from 12 to 15 and have half bagels and half muffins. Bill responded and sent me a confirmation. We didn't have the meeting last week because so many people were out. This morning I went into the room at 9:15 and there was no breakfast. I called Sodexho and Kelly told me that they were serving hot breakfasts in other rooms so they were a little behind. When I got back into the conference room the food was there, but only enough for 12, and the fruit bowl was only half full. I called Kelly back and told her the whole order was not brought up. She told me that the order she had was for 12 people, but she would send them back in with the rest of the food. They came back with three more muffins, not the bagels that I had requested and no more drinks or fruit. After the meeting I sent her the confirmation that from a few weeks ago with specific instructions on what we wanted. I still have not received a confirmation from her. After that I was working on the catering order for the yearly day long team meeting next month. I want to be specific about what we want at that meeting so today doesn't happen again, I must have been interrupted a half dozen times for things that really aren't all that important. At lunch I picked up some paperwork from my doctor and decided to go to Dickey's for lunch. I have gone there a couple of times. The food is good, even if it is a little on the expensive side. I told the first guy my order and then moved down the line. The next guy had split up an order and was asking me what I wanted on the wrong plate. I had to tell him about 100 times that it wasn't my plate. Then he finally got my plate and put the wrong sides on it. I pointed out that I had asked for the Jalapenia beans and he had given me green beans. Then he put baked beans on my plate. I felt like reaching behind the glass, grab his face and make him look at me while I told him which sides I wanted. Then when I got to the register, the cashier rang up the other plate with my plate while I was standing there repeating "That is not my plate." So then there was a big huffy fit while the took the order off the register and re-rang my plate. All that and the food wasn't the same quality as it was the last couple of times that I have eaten here. I'm sitting here feeling frustrated and I have to go back to the office and try to get the things off my desk that need to move while being pelted with trivial requests. I am so glad that at least it's Friday.

Sorry about the whiney rant. This is just where I'm at today.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Do Over

2011-11-03T18:18:00.002-04:00

Finally a Wego Health prompt that I'm excited about. Today's prompt is:

"Dear 18 year old me. Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) years."

Dear Me:

We have just turned 18. We have graduated from high school and we are sitting on a South Florida beach feeling lost and uncertain. We are at a pivotal point in our life and the decisions we are making right now will impact everything that comes after this point. So I need you to make some serious lifestyle changes. That feeling that we have in the pit of our stomach is dead on. We are not where we need to be. We need to back up and reconsider what where we are going.

The first thing is you need to stop putting so much stock on what is expected of us, and do what you know is what is right for us. There are two other options that we found attractive, but you are afraid that if we follow them we will make other people unhappy. I say go for what we really want to do. If you will admit that going to FBC was a mistake and go home, you will be doing us a favor that will change the course of our life for the better. The people that you are so afraid of making angry won't even be in our life in ten years. Do this for us.

So now let's talk about our health; we have some serious things that need to change. Do you remember the day in third grade when we were standing in line the day we returned to school after being sick for a week and we fainted? The teachers said that it was because we locked our knees. They were wrong. Remember when we were running in Aunt Euple's front yard and we fainted. Again it was brushed off because it was a warm day and we were running around too much. I know that we faint a lot. That is why people don't get so upset when we do it. But we need to be upset. We have an arrhythmia that can be fatal. Granddaddy did not have a massive heart attack. He had a sudden cardiac arrest that was caused by the same arrhythmia that we have. Daddy has it too, and Mike. Somehow we will manage not to pass it on to any of our children, but we need to be careful. We can't be athletic. We have to avoid any kind of competitive sports and intensive exercise. We are walkers, not runners. We also need to turn the alarm clock to a station that plays classical music. We don't need to be startled awake by loud beeping or blaring advertisements. And there are many medications that will cause us trouble. Not many doctors know about our condition in the 70's and 80's, so getting them to not prescribe the antibiotics and antihistamines that are bad for us will be impossible. And the list is so long that there is no way I can give you the whole list. But do avoid Sudaphed and Bactrim. Also, they are going to want to start your labor with Oxytocin. Don't let them. It will cause you to faint during labor.

Our health is highly impacted by the things that you eat. You are already having problems. The episodes of hypoglycemia that you are having is wrecking havoc with our kidneys. Anorexia is the pathological inability to maintain a normal body weight. At this point we have been doing this for years. I know that you don't feel hunger and it is easy to forget to eat. I also know that you use it as a way to stay thin, but the kidney damage that you will experience in our 40's is caused by being anorexic now. You will quit being anorexic in your 30's, but the damage that is done by it isn't reversible. Please learn to eat on a schedule. When choosing what to eat, please ignore the Food Pyramid and eat as carbohydrate free as possible. The book "The Atkins Diet" is a very good primer on how to do it. You especially need to avoid a substance that will soon replace sugar in most foods called high fructose corn syrup. A lot of the problems that we have now can be tied to the use of those products. Also avoid hydrogenated oils. They learned a few years ago that they are worse than the saturated fats that they are replacing in our diet. When you do eat carbohydrates, they really need to be whole grains. That is going to be a challenge, but they will become the fad in the 90's.

I wish I could say that this covered it as far as health problems go, but you will have a lot of problems in the future that you can't avoid. You can only control so much. So go easy on yourself when the problems do come up. But don't go easy on your doctors. There will be some who will want to brush your problems off for many different reasons. When you have a problem that won't go away push back. Ask questions, and expect answers.

The last thing I would say is readily accept the help offered you by your friends, but put off your family. It seems harsh, but things will get complicated when your family steps in. Love them from afar. It will protect your relationship with them.

So, take care of yourself and have some fun. One more thing, don't even consider marriage until you are out of college. It will keep you from making some big mistakes.

Love,
Emmy

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Free Truman!

2011-11-02T12:00:00.005-04:00

Today's blog prompt from WEGO Health is:

"My TV Show. Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog."

The first thing is that I think my show wouldn't last a season. There is the "Done" factor, nobody would watch it because it has been done in a much better way. I mean, well combine House with The Office and As the World Turns and you pretty much have it. Except, most of my conditions aren't as rare as the ones on House. Though he does tend to mention LQTS and Hyperaldosteronism quite a bit. UPS is nowhere near as funny as The Office and my life definitely isn't as catty as a soap opera. So there you have it, it would be a dumbed down version of shows that are already wildly successful. If anyone watched it at all it would be because of the train wreck factor. Even my doctors look at my list of diagnosis' and shake their head in disbelief. Really, they do. Here is the list as it stands:

Androgenic Alopecia, Breast Cancer, Chronic Kidney Disease, Depression, Diabetes, Essential Hypertension, GERD, Hyperinsulinemia, Hypertriglyceridemia, Hypothyroidism, Left Ventricular Hypertrophy, Long QT Syndrome, Lymphedema, Metabolic Syndrome, Migraines, Neuro-cardiogenic Dysautonomia, Obesity, Obstructive Sleep Apnea, Osteoarthritis, Primary Hyperaldosteronism, Pure Hypercholesterolemia, Reynauds Syndrome, Tension Headaches

I could be a season of Scrubs all by myself. I guess this is what comes out of Alabama inbreeding.

Oh yeah, and my family tree would make a great episode of Who do You Think You Are.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

NaBloPoMo 2011

2011-11-01T13:15:00.002-04:00

Happy All Saints day otherwise known as the beginning of NaBloPoMo. I have signed up at Wego Health for their list of prompts and will be checking blogher for other prompts. I probably should stick with one list, but I think that I want to do my own thing too. I'm just going to commit to writing a post a day for the next 30 days.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

2011-10-31T22:51:00.000-04:00

October 2010

October 2011

One Year!

October, Lung Health Month

2011-10-28T23:42:00.000-04:00

You would think that being Breast Cancer Awareness Month and Sudden Cardiac Arrest Awareness Month would be enough. It's not. It is also Lung Health Awareness Month, and in a few years when the pink ladies can concede the floor, you all are welcome to duel it out for control of the month. But I haven't blogged about this because to be honest, I have a hard time seeing Obstructive Sleep Apnea as a lung disease. There is nothing wrong with my lungs. The problem is with my autonomic nervous system that relaxes my throat too much when I sleep and I strangulate 89 times in an hour. Yes, that is correct. Every 45 seconds I will have been without oxygen for the 10 seconds that it takes for my brain to signal my autonomic nervous system to release epinephrine and wake me up. In other words, not really sleeping at all. And in that time, if you are sleeping anywhere around me, I am probably keeping you awake at the same frequency. At the same time that the epinephrine is waking me up, it is also repeatedly raising my blood pressure and prolonging my QT interval. Not a good thing for a person with congenital LQTS and hypertension. But the most dangerous thing about the situation is that it lowers my oxygen saturation to 66%. Anything below 95% is critically low. My cardiologist wanted to know why I'm still alive. I was slowly killing myself with sleep or the lack thereof.

Here's the thing, if you snore it is more than a problem for the people around you. You are hurting yourself. I have not willingly slept with out a CPAP machine since the night that I was diagnosed. Since learning about the quality of sleep that is available with the machine, it is physically painful for me to sleep without it. And you aren't the problem, you aren't willingly keeping other people awake. You aren't causing this problem, but you can cure it and you will benefit the most for remedying it.

Thank You Dove

2011-10-28T15:28:00.000-04:00

You are a chocolate after my own heart!

What's in your purse?

2011-10-27T13:02:00.000-04:00

It weighs a ton!

Yesterday Kris Reid from Be Still and Know wrote a post about what is in her purse. She'd gotten the idea from another blogger named Abby. I thought it was funny, and I was glad to know that I'm not the only person on the planet who feels compelled to carry one of everything with her at all times. So here I go, this is what is in my purse.

Are you sure you want to read any farther?

1. Green 2011 calendar holding my calendar, 13 old appointment cards, a prescription for Spironolactone, my diet sheet, my medical fact sheet, my Arizona CERTs list, my address book, 2 paper clips, a hand made valentine from my friend Beverly, my department contact list and a paper with the Apostles Creed on it.
(are you sure you want to continue?)
2. Black 2012 calendar holding six pending appointment card and 5 paper clips.
(no, I actually have 8 pending doctor appointments and we aren't even into November yet)
3. My glucose monitor kit containing a monitor, a lancet, a bag of sharps, a stack of alcohol wipes and a bottle of test strips.
3. My wallet
(I would need another post to describe what's in there, really.)
4. A make-up bag containing foundation, liner, mascara, lipstick and a chap stick
(yes, I'm vain enough that it is a necessity.)
5. A glasses case
6. 16 Purell sanitizing hand wipes
7. A bottle of Metformin
8. A small first aid kit containing band aids, aspirin, neosporin, burn cream, Zantac and a nail clipper
9. 3 half used packs of tissues
10. 1 small notebook used to make notes to myself and lists
11. A Kroger coupon for $1.50 off a Hershey Bliss chocolate bar.
(hmm, it doesn't expire until January. I might use it for a Christmas gift.)
12. A prescription for Metformin
13. A small leather pouch holding 7 thumb drives
14. A cross necklace
15. 2 nail files
(you'd think that I'd have great nails...not!)
16. A grey camera bag containing only a SD card
17. A baggie containing fish oil, biotin and vitamin D3 supplements
18. An empty bottle of Jergens Ultra Healing hand cream.
(going into the trash right now)
19. My camera
20. A miniature purple hair brush
(oh! You're still here? I'm impressed
21. 1 elastic head band
22. 5 pony tail holders
23. 1 bottle of fast acting nose spray
24. 3 pens
25. 2 disposable lighters
26. 1 mostly unused bottle of Nitrofurantoin
(my doctor told me to stop taking it)
27. 1 fold up hairbrush
28. 1 bottle of spf 60 sunscreen
29. 1 bottle of Ibuprofen
30. 1 tin of Nivea creme
31. 1 chapstick
32. 1 nail clipper
33. 1 double A battery
34. 4 packs of Truvia
35. 1 invisible hair tie
(ewww! where did that come from?)
36. 1 Kroger coupon for $2 off fish oil
37. 1 magic ear listening device
38. 1 bottle belt clip
39. 1 USB cord
40. 1 iPod Shuttle
41. 1 highlighter pen
42. 1 toe nail clipper
43. 1 flashlight
44. 1 bottle of Metoprolol
45. 1 silicon pack
46. My cell phone
47. My car keys

48. 1 flat head tweezers
49. 1 extra car key

I think after that I need a therapist to find out why I feel I need to be prepared for every given situation possible.

Errands after work

2011-10-26T22:58:00.001-04:00

I had several errands to run after work tonight and to make it a chore, I was really tired. So first I headed to the gas station to buy a bit of gas. Have to make sure that I have enough for the work week. For some reason there was a run on the QT. You'd think it was the days after Katrina and the Atlanta area (the upper third of Georgia) because we are under EPA restrictions, could not find an available drop of gas to be had. Then I needed to head to the pharmacy to get three prescriptions filled. This was in addition to the four prescriptions I'd filled online earlier in the day. Pretty soon I should be able to open a pharmacy of my own, unfortunately I won't be able to spare the medications. I need them all. I haven't transferred the prescriptions from the pharmacy to the online company because of loyalty to the pharmacist. When I first was diagnosed with cancer, I had to find a pharmacy that would carry an anti emetic that cost $600 a pop. In the pharmacy that I'd been using the pharmacist yelled at me. The second pharmacy that I went to told me they could order the drug but it would take a week or two to get the drug. This was on Friday and I was scheduled to start chemo on Wednesday. There was only 2 weeks between being diagnosed and starting treatment for me. I was almost in tears when I went into the Kroger pharmacy to see if they could get the drug for me. The pharmacist was so nice. He didn't have it there, but he'd call around to other Kroger stores to see if any of them might have it. He did end up locating the first dose for me and ordered the subsequent doses. After that every time I came in he was so solicitous and kind. He could tell when I was ill or in pain and really put himself out to help me. Last month when I went in he was not there. There was a younger man who was working the pharmacy. I asked him to fill my Bupropion and Metformin prescriptions. When I went to pick them up he said that I had one of the medications filled the week prior. But I knew I needed both medications. He sold them to me anyway. That has never happened before. When I got out to the car and opened the medications I found the mistake. Instead of filling the Metformin he filled my prescription for Metoprolol. I did have that one filled the week before. I was uncomfortable with the situation, but I had to go back inside and get the Metformin filled. It has been a month and I was hoping that Mike, the old pharmacist would be there. He was not. I haven't seen him lately. The new pharmacist was there. I kind of cringed, but asked to have my prescriptions for Metformin, Bupropion and Metoprolol all filled. I didn't want to have any mix up. Then I left to shop for things at Walmart that I needed. I returned around 40 minutes later to find out the new pharmacist didn't have the prescriptions ready. There had been a challenge with one. My previous prescriptions for Bupropion were for SR and this one was for XL. I had to stand there for around 40 more minutes before he got it together. Not only had he not prepared the Bupropion prescription, he hadn't prepared the others and I only had enough Metformin for half of tomorrow. I did kind of a tacky thing. I asked about Mike and was told that Mike was moved to another store that is too far away to consider going too. I'm kind of heart broken, but I guess I need to move the rest of my prescriptions to the online fulfillment center. Boy am I going to hate not having Mike to look after me. After that I dropped off a gift at church and went home bummed and feeling a bit abandoned and there isn't even anything on television worth watching. So here I am, writing about my boring chores. In my perfect world I thought I'd be able to breeze through the gas station, pop into Kroger and then run through Walmart and be done in an hour. Thinking about it now I see how unreasonable my expectations were. You'd think I'd know by now that things get sticky, especially when you are as tired as I am. So, good night all. Sleep tight.

NO NO NOOOO!

2011-10-26T21:41:00.002-04:00

They are leaving it up!

Lord, help us.

The picture I first posted has been replaced. The original picture I posted because I wanted to get it taken before the obese man wearing a wife beater and overalls crossed in front of the camera. You should check out peopleofwalmart.com. This picture is much better.

And you are a grown-up?

2011-10-26T16:12:00.000-04:00

Seriously, this is how your mother raised you?

Tray, tong and napkin left on the counter after a meeting and never cleaned up by the person who left it there. Coffee mug added by some one else in the afternoon. I guess they think we have a maid.

Medical Tuesday

2011-10-25T23:10:00.001-04:00

I got good news at my cardiology appointment this morning. This evening I got equally good news at my weight management appointment. I was told that I have lost the same percentage of weight expected to be lost by a bariatric surgery patient after a year and that I'd lost the same BMI percentage. Wow! and I didn't have surgery. My friends who had surgery still had to diet, but I did it with diet only and no surgery. Wow! I didn't lose as much as I'd hoped over the year, but I don't feel that I failed.

Cardiology Tuesday

2011-10-25T10:15:00.003-04:00

I'm at Dr. K's office and so far everything looks good. The nurse had a difficult time getting an ecg reading which had me a little worried that something wasn't quite right. But after glancing at the reading, I didn't see anything that appeared out of the ordinary other than I didn't see any inverted T waves. L, the NP came in and said that the reading looked good to her, so now I'm waiting for the QT interval to be corrected using the Bazette equation, and then talk with Dr. K Then hopefully I'm out of here for at least 6 months, if not a year. It's not really that I mind coming here. I just hate that I have so many appointments that I go to. So I'm crossing my fingers that everything is fine and that I can cross this appointment off the list.
_______________________________________________________________
So Dr. K did come in and remarked that I had no inverted T waves today, but added that they would return at another time. He said that everything is fine but still wants to see me in 6 months. Oh well, I really would like a year, but I guess my heart is just to finicky for that. At least there wasn't anything new today.

He also asked me again if I would go to Weight Watchers, and I replied no, but I am seeing an obesity specialist. I explained that almost everyone who loses weight with Weight Watchers gains it back in between sessions. That's really not where I want to go. He was happy that I am seeing Dr. B. It kind of upset me a little that 48 pounds in less than a year isn't good enough, but I do have almost 30 more to go. I just think losing it slowly is better than fad dieting it away and putting it right back on. However, I do wish that eating healthy was easier. I am trying to force myself to eat lunch and they only had a couple of things today that were carbless. This tastes as bad as it looks. I need to start bringing my lunch again.

Three Day Atlanta Update

2011-10-23T23:18:00.000-04:00

2800 walkers donated 6.5 million dollars for research, diagnostic and awareness for breast cancer. 6.5 million! Thank you pink ladies

Sad Money

2011-10-23T19:36:00.000-04:00

My friend asked if I'd run the tech equipment during the memorial service for her husband's sister. This is a couple that are close friends and have had my back on many occasions. When you are a single mother with multiple chronic conditions life would be impossible without friends like them, and I have been blessed with quite a few. Of course I'd do it. Not a problem. But after the service this afternoon they gave me an envelope with a Visa gift card that has quite a bit of money on it. I'm kind of sad that they didn't know that they didn't have to give me this. I was happy to do it for them. And I'm sure that whatever I buy with this money will always be a sad thing for me. So after staring at it for quite a long time, I decided to give it to my Compassion International child as a present. Estefani's family will welcome the money and not associate it with anything sad. It will make me very happy that the money is going for something good. This feels like the right thing to do.

The Blame Game

2011-10-20T12:57:00.000-04:00

“Third party payors (insurance companies and governments) reimburse for procedures performed rather than out-comes achieved, and patients bear little responsibility for the cost of the health care services they demand” Harvard Business Review, Sept. 2011 The Big Idea

Let’s examine that statement for a minute, because I have seen and heard it for a while and it is base on a false assumption. I work for a Fortune 100 company and they provide excellent benefits, it’s part of my total compensation package. In other words, it is how I get paid. Part of the benefits I receive, as part of my compensation, is excellent health insurance. The company that I work for pay two thirds of the cost of the insurance policy. The other third comes out of my pay check in weekly installments. But because this is part of my total compensation (how I get paid) I am really the one who works for this coverage. I am responsible for it’s costs. Furthermore, money gets taken out of my paycheck every week to fund Medicare and Medicaid. So it isn’t the government who is funding these insurances. That money is coming from me and all the other taxpayers in America. We bare the responsibility for the costs of that coverage. I would really like to see the lie that we demand health care, but expect someone else to cover its cost die a quick death. I need health care and I am responsible for its costs, so I pay for insurance by working.

Last Night - A date night seeing 50/50

2011-10-15T18:50:00.001-04:00

I was at the gym with Jim, my workout buddy, last night and about to leave when he asked me what I was planning for the evening. I told him that I had been thinking about seeing the movie 50/50. He seemed a little hurt when he asked why I hadn't asked him to go. Well, the first thing is that I thought he would think it was a chick flick. And well, I was ambivalent about seeing the movie at all. I didn't know if I'd be weepy or disgusted by it and I really didn't want to justify that to anyone. Still, he wanted to go so I met him at the theater.

The movie was more dead on than I could have imagined it would be. It is obvious that the person who wrote the screen play had been around the cancer block a time or two. The only unrealistic thing that I could pick up out of the movie was the scene where Kyle was putting neosporin on Adam's surgical site and Adam complained that Kyle had used his finger. If it was a real surgical site, Adam wouldn't have been able to feel anything at all and would not know Kyle had used a finger instead of a que-tip. Everyone, including Jim was finding things humorous, and I guess the dialog was funny at times. But having felt the emotion behind that kind of gallows humor, it left me near tears.

During the movie, Jim kept asking me if this was right or if things like that happen. And I had to keep telling him the movie was dead on. That is exactly what it is like. After the movie Jim wanted to go to Starbucks and talk about it. I knew it was a bad idea, but I went any way. While we were there Jim said, "You talk about when you had cancer, but you never talk about what it was like." and I think maybe he is right. It is right because I could never find the words to express what it was like. I had so many wonderful people who stood with me through my cancer, but in too many ways, I was all alone in this fight. You can never understand what it is like to sit in a room and have someone you have never seen before tell you that you have cancer until that happens. I really wonder if Jim and I understood the same things about the movie.

I love Jim, he has been a true friend for many years. While I was going through cancer he was going through a very rough time himself. That didn't stop him from reaching out to me and trying to relate to me and try to keep me in life. I think that we knew each other's struggles that year, we are in some ways brought closer to each other.

I would say, go see the movie. But if you are a survivor, don't go with someone who has never faced cancer.

Breast Cancer Headlines

2011-10-15T01:44:00.001-04:00

Fox 5 News: "The things you can do right now to lower your chances of breast cancer"
Me: "Become or a man or die at 39?"

Everything else, you can add it all up and you won't even touch the risk factors this presents. Your greatest risk of developing breast cancer is being a woman over the age of 40.

Think about it, your greatest risk are two things you can't control.

Do you really want us to stop painting the world pink for the next 5-10 years that it takes to obtain the cure? It's not your decision. We are going to cure this thing.

Annual Flu Shot Rant

2011-10-13T22:00:00.000-04:00

OK, it's time for my annual flu shot rant. Let's face it, everyone knows that "I got the flu shot, and then I got sick as a dog with the flu" is a lie. You are making a fool of yourself when you use that ruse. The people who are saying that themselves know you are lying, because they are too. And the responsible people who get the flu shot know you are too. We get it every year, it has never once made us ill. You are making a fool out of yourself. Just own up and say "I am a needle wuss as long as it doesn't cover the dozen tattoos that I have. I don't want to see my doctor, maybe because I owe him money. Or maybe, I'm just too selfish to give up the five minutes it takes to get the shot...or better yet, I'm a Drama Queen and I want you to feel sorry for me when I'm sick as a dog for two weeks." But seriously, I know you are lying when you tell me that the dead flu virus that they inject you with gave you the flu. That would mean that I'd have to believe that a baseline organism raised itself from the dead and infected you with the flu. The virus isn't Jesus Christ. It has no power over death. The virus they inject you with is dead. It is just so that your immune system will recognize the DNA as foreign and attack any live virus that you may come in contact with. The other infallibility that you are asking me to believe, and I really don't, is that your immune system is so impaired that it is weaker than mine. Really now? I had advanced breast cancer. They took out all my cancerous axillary lymph nodes and nuked the mammary and supraclavical ones. I do not have an immune defense to fight off anything. Do you have AIDS or something? Really now? Don't lie to me. Just tell me you are a wuss.

Oh yeah, and I have been told that lie so many times I am not even nice about it anymore. I think we encourage the behavior by being polite and pretending to believe the liars. Come on now y'all, they know they are lying. We have a duty to nail them to a wall. So I did. Yes, you heard that right. This dyed in wool, true southern GRITS nailed the idiot to the wall. Today I was in a Health and Safety Committee meeting discussing the results of our recent flu shot drive when one of our own members tried to use that line on us. Say what? I wasn't sure I was hearing correctly. Did Toby just say that the dead flu virus made him ill? Oh hells no! I'm not letting this one go. He's with my people now. So I nailed him to the wall in front of the whole committee. Maybe not such a good idea since he is head of the corporate security department. Still, really? You are going to try that lie in front of the committee that knows the truth and expect us to just be polite about it? Seriously? Not going to happen Toby. We are the ones called to stand up to that lie. GET YOUR FLU SHOT AND STOP INFECTING THE PEOPLE YOU WORK AROUND AND THE ONES THAT YOU LOVE! It's that simple. Do you really think that we are sympathetic when we have to hear your hacking cough for two weeks or have to move away from you in a meeting? Give us a break. GET YOUR FLU SHOT! It's free. It doesn't really hurt and the chance of a negative side affect is astronomically low. GET THE SHOT!!!!!

Oh yeah, and quit pretending that you are anemic and sign up for the blood drive too. You will save lives and we will give you cookies.

Sudden Cardiac Arrest Can Happen to Anyone

2011-10-13T16:19:00.001-04:00

This is why I always take LQTS seriously:

Teacher's Quick Actions Save Girl, 12 After Collapse

Kylee Shea,12, is back at school, just two weeks after she passed out while walking in the hallway. Kylee blacked out and fell to the floor, heart stopped

Birds have wings because they were meant to fly

2011-10-12T15:06:00.002-04:00

There is a bird that lives in a cage inside a nice house. He doesn't lack for anything; he is given everything he needs, except his freedom. He will probably benefit from his imprisonment by living a much longer life than he would otherwise. But this bird is the meanest thing on the planet, except for maybe the two cats who wait day and night for a chance to devour him. The cats aren't mean because they want to eat the bird, they are mean and selfish by their peculiar nature. They only care for each other and that is on a conditional basis. They enjoy their comfy perches, taking advantage of their clean litter box and regular meals without ever giving her any sign of affection. The bird doesn't show her any affection either, but why should he? She has imprisoned him in this cage and exposes him to companions who wish for his demise. Yes, she lets him out of the cage everyday to flit too and fro in the sun room, but he never gets to soar. He has never known anything but the cage and the sun room, but inside of himself he feels that his wings were meant for greater things. His body aches and yearns to find out what it is. So in his frustration, he dives and pecks at her and the cats. His anger seethes inside him every day he is in the cage. He does not love her and probably never will. If I opened the doors and let him outside, he would surely take flight and be gone. It wouldn't matter to him that he knows nothing about finding food or shelter or keeping himself safe from predators. He longs for his freedom. He will give up his life to be able to soar in open skies. The cats on the other hand, if shooed out the door may chase a frog or climb a tree. But when it's time for that regular meal or a nap on the perch they will be crying at the door. Not because they love her, but because they know they have an easy life and wish to keep it. And she, she is giving her life away to things that can never love her. Birds have wings because they were meant to fly. Cats make themselves comfortable because they know how to survive. She was meant to be loved, but love for her is impossible to find. She's looking in the wrong places.

Mountain Weekend

2011-10-09T18:59:00.000-04:00

Lizzie at 57th Fighter Group Restaurant

I took Friday off from work to head up to the mountains for the annual fall retreat. But before I could get started it was necessary to replace my rear passenger side tire, pick Lizzie up to take her out to lunch and to get a flu shot and pick up a new water reserve for my cpap machine. It took more time than I wanted it too. I was able to get started on my way around 2:00. I had told my sister that I was leaving for the weekend to go to the mountains. I don't get phone reception there so if she needs to contact me I could be reached by Facebook. Shortly after I lost the ability to call, I was notified that I have voice mail messages. Since I couldn't call my voice mail, they would have to wait until I went into one of the towns during the afternoon the following day. I got to the retreat center around 4:30 and began setting up the audio-visual equipment for the evening's meeting. And I began to relax. I truly enjoy the retreat, even when I'm working and speaking at it. I was glad that my segment wasn't scheduled until mid-morning on Saturday. It gave me the night and early morning to read over and study my notes. The retreat was mostly a good time. I knew that the retreat center isn't very responsive to special diets and tends to serve a lot of high carb foods, so I took things that I could eat if nothing else was available. But beyond that all went well. I enjoyed a weekend with people that I really enjoy.

Path at the retreat center

I left this morning before the group because I needed to get the equipment back to the church so it could be used in the Sunday school worship service. I was glad to be traveling alone. It gave me time to meditate on the retreat. I had been disappointed on Friday when I went up because the leaves have only barely begun to turn. I was hoping to get some picture, and really, just surround myself in them. Saturday morning was a little brisk, and as a result the leaves changed a bit more and I enjoyed some time in the late afternoon walking around on the paths surrounding the retreat. It was peaceful, but instead of being totally surrounded by the beauty around me, I was reviewing the morning segment in my head and conversations that
I'd held and many other thoughts and memories. Even on the way home, I spent the first little bit of the drive with my mind whirling around things that have passed and things that I need to do, not noticing the wonder around me. Then I rounded a bend where the leaves on the trees covering the road had changed, and a mountain was in the middle of the view, and I was brought completely into the moment. I realized that had been missing from my life for a long time. I wonder when I lost that ability. I have so many memories as a child of playing on a swing over a lake, or watching a sunrise from the backseat of a station wagon and being so absorbed in the moment, it feels like I could reach out and touch it now. The ocean had that ability with me. When I was in college, I would go out on the beach and blend into the beauty and power of the surf to get away from the stresses of classes and dorm life. I remember many moments like that with my boys, but only a very few with Lizzie. I wonder when I became so distracted that life happens inside my head and not in the surroundings that I am actually in. I so need to get that ability back. So I tried to focus on what was in my environment and not on the thoughts inside my head. It is harder than I imagined it should be. I think I need to take a break for a few minutes for a while to try to get that ability back.

Sudden Cardiac Death Awareness Month

2011-10-03T15:34:00.000-04:00

It is National Breast Cancer Awareness Month. It is hard not to notice it. Everywhere you go you are accosted with pink ribbons. The breast cancer awareness initiatives have been so very positive that many other health advocates, especially those for other types of cancer aren't ashamed to spew their jealousy. As if their derogatory attitudes was going to stop the movement. Hey people, in a few years we might well have a prevention and a cure. If you think we are going to fold up our pink tee shirts and put our athletic shoes away now, you are sadly mistaken. We won't move over until mammogram machines are a thing of the past.

Still, while breast cancer is getting it's yearly pep rally going, another cause that is near and dear to my heart is trying to get it's message out this month. Congress has declared October as Sudden Cardiac Death Awareness Month. It honestly isn't getting a lot of attention. If I hadn't set a reminder of myself, even I might not know this. So when I was looking for information on this I found this site that discusses the issue of Sudden Cardiac Death.

"More than 250,000 deaths occur each year as a result of sudden cardiac arrest (SCA). In fact, SCA claims one life every two minutes, taking more lives each year than breast cancer, lung cancer or AIDS. To decrease the death toll from SCA, it is important for the U.S. public to understand what SCA is, what the symptoms and warning signs are and how to respond and prevent SCA from occurring." Heart Rhythm Online

Most people have heard stories of the athlete who collapses on the playing field and can't be revived. A lot of people have stories of family members who died suddenly, but refer to the death as being caused by a massive heart attack. This is actually my families favorite explanation. But almost nobody takes it very seriously. People just don't seem to know what puts them at risk for it. For me, the thing that puts me most at risk is having a genetic predisposition, but there are other things that can put a person at risk for SCA including:

Coronary artery disease
High blood pressure
Diabetes
Smoking
High cholesterol
Obesity
Excessive alcohol use
Drug abuse
Stress
Family history of heart disease
Advancing age
Certain medications, dietary supplements and herbal remedies
Obstructive Sleep Apnea

Still, even in medical communities, there just doesn't seem to be much awareness or concern about SCA. I have written of many occasions that my doctors want to demur the risk to me of SCA. To them it becomes unimportant when it gets in the way of a treatment that they feel I might benefit from or a pill they would like me to take. So, nice that SCA now has a month. Too bad it will get pinked off the map. It is unfortunate because if there was a real awareness campaign for it maybe I wouldn't have to fight so hard to get my medical teams to take it seriously.

Pink Month

2011-10-02T19:33:00.001-04:00

a peek at me.

My life was divided into sections. BC and AD took on new meaning; before cancer and after diagnosis. There were many divides and sections before and a few after, but this by far is the greatest. This is the Tsunami that rained through my life. In the midst of the storm I found God's presences as He has always been in my life. I found more grace and love than I'm deserving of. I found hope.

This is what I wrote on a web page that I created shortly after my treatments for cancer were over. I haven't been to that website in a long time, and I had actually forgotten what I wrote. I look at it now and I'm surprised by it. I saw that so much more clearly then than I do now. Some things should not be forgotten. I should not forget the close presence of God, the grace, the love and the hope that I was experiencing then. I look back now and I remember the sickness, the struggle to cope, but I rarely think about the good that came with my illness. I wish the blog posts that I wrote through my illness hadn't become the victim of a hacker. I wish that I could go back now and read them.

2011-10-01T23:50:00.000-04:00

Ok, I will admit that three posts in one day is excessive, but this is crazy. When I was a child I was pissed because a hurricane would never be named after me. After all, "I'm a little prairie flower, growing wilder every hour. Nobody cares to cultivate me. I'm as wild as wild can be." Since I really am an eastern shore GRITS, I should have a hurricane named after me. But it would never happen, because my real name isn't emmy and it falls in the middle of the alphabet. Much too late to have an active storm named after me...right? Not so, in 2003, after my cheating ex moved to Morehead City, a late hitting storm was named after me was aiming at the shore near his new home. At first it looked like it might become a category 3 or 4 storm, but then lost steam and came ashore on Atlantic Beach as a tropical storm. Ex's first hurricane season on the shore was named after me. Still, I do wish it could have been at least a category 2 or 3...no, I really wished that it would have been a 4 or 5 so it would have displaced him. It was what it was and it hit him. So imagine how surprised I was tonight when I was watching the news and heard that hurricane Ophelia, a category 4 storm is heading for the Bahamas. A late season storm. Dang, couldn't I have been more than a tropical storm? I hope that the storm will lose force and not hit the islands as a hurricane.

I think I must be shrinking

2011-10-01T18:50:00.000-04:00

I think I must be shrinking. I heard today was going to be cooler than normal. I thought what they meant was that it was going to be in the low 70's, so I dressed in capris with a mid length sleeve shirt and my favorite sandals and headed out for breakfast at Cracker Barrel. When I first stepped out of the house, I knew I wasn't dressed for the weather, but I thought that, like any fine fall day, it would get warmer. It didn't. In fact it didn't even get into the low 60's. I had some errands to run before I headed north to my friends annual fall pig roast. I kept hoping it would get warmer, but as it approached time for the party I realized that I was woefully under-dressed and needed to do something about it. So I stopped in a store and bought a pair of jeans, a pair of loafers and a shawl for the afternoon. I changed in their bathroom, and was glad to have one pair of pants that actually fit...well almost. See, after losing 48 pounds this past year, all my fall and winter clothes are waaaaaay to big. I literally have nothing to wear. So I didn't really feel bad about the wastefulness of buying new clothes because I didn't dress properly. I can honestly claim to need these clothes. But here's the kicker, I've not only lost horizontally, I've seem to have lost vertically too. The petite size pants that I bought are dragging the ground. What's next? Am I going to have to buy my clothes from the husky kids racks? I wonder if I'm even 5 feet tall any more. Maybe I should have my doctor re-measure me when I go in. Ummmm, if I've lost height that means that my BMI went back up by default....Dang!

Oh well, the pig roast was wicked fun even if there was no pig this year. The chicken was fantastic. And I have one pair of jeans to wear to the women's retreat next weekend. Hope the leaves will change by then so I can get some fall pictures.

Nightmare before Christmas

2011-10-01T18:15:00.002-04:00

The first thing that I saw after work on Friday was this. I just have to say that this is wrong on so many levels I don't even know where to begin. As I was walking up to the store I prepared to take a picture of the tree and ~~bitch~~ complain how it is just too early to be seeing Christmas. Geez! Let us get through Halloween first. Then as I got closer my worst fear was realized. Someone is having a Nightmare before Christmas. I wonder if next month they are going to hang miniature turkeys and pumpkin pies on it...Hey, Christmas is coming. You might as well just leave it up. I think that my brother would kill me if I even suggested that maybe we should do this at home. And we thought that the Walmart customers were weird, it starts on the inside. I think someone there had just a little too much break time on their hands. Back to your registers!

50/50

2011-09-30T12:11:00.000-04:00

The movie 50/50 starring Joseph Gordon-Levitt starts in theaters today. I have seen some of the clips from this movie and it seems like it is going to be every bit as funny as it is intense. Still, I'm uncertain if I want to go see it. The thing is I've been there in the 50/50, and what my oncologists tell me, they wouldn't even have given me the 50. Also with my heart condition, every heart beat could be 50/50. I accept it, but I don't think about it much. I'm wondering if someone who has never been there can truly understand what it is like. When it comes right down to it, I haven't ever described it to anyone, simply because I lack the range of vocabulary to adequately do the job. That's why breast cancer survivors hang out in support groups for years after their diagnosis. Because nobody else understands and we can't tell you what it's like. I'm afraid if I go see it and it totally blows off the all absorbing bottom of the bucket reality of knowing you could die, I will be pissed and disappointed. Because if you don't tell that, there is no story to tell. Then again, if it hits it dead on, will I be back in that place again, with all the emotion that was there when I was sick. Maybe I should just pull Bucket List off Netflix and watch it again.

Crazy Sized Portions

2011-09-29T18:44:00.001-04:00

Grilled Chicken Salad from Canyon Burgers
Woodstock, GA

I'm eating out and I have really enjoyed this grilled chicken salad. But I am so stuffed I couldn't possibly think of putting another bite of it in my mouth. There is enough of it left for another whole meal. I'm sure that if I didn't over eat, there would be enough left for another 2 meals. This restaurant is fairly inexpensive. I got the salad and a drink for less than $10. I don't think they should lower their price, just maybe cut the portion and get smaller plates to make people think it's bigger. I hate wasting food, but I know that if I take it home it will sit in my refrigerator until it becomes a science experiment and I will still have wasted it.

My Compassion Granddaughter

2011-09-28T14:06:00.001-04:00

A few weeks ago an old college mate of mine posted the face of this beautiful child on Facebook with a brief description of her. Her name is Estefani. She is three years old and the child of a single mother in Bolivia. She likes to play hide and seek and play with dolls. I can't help it, I find her captivating. Kees, my college mate, has been working with a group called Compassion International since he left college, and finds sponsors for children living in poverty. Something just called me to her right away and 19 minutes after Kees posted her picture, I became her sponsor. Sponsorship will allow her to go to school, eat healthy meals, get medical attention and play with other children in a safe environment. The program is operated through the local church that Estefani attends with her family. Yesterday I received my sponsorship packet for her and now I'm really excited. Finally, I have a granddaughter! If you would like to know more about Compassion International please visit their web page; compassion.com

Moon River and Me

2011-09-26T17:19:00.001-04:00

It Takes One to Learn

2011-09-24T01:36:00.003-04:00

It started when her new Android phone wouldn't charge. She called the cell company and they sent her a new battery. Later I heard that she got the new battery, but the phone still wasn't working. So she called the cell company again and they sent her a new phone. She got the new phone yesterday. She loved it. To celebrate, she invited a few friends over. But some of those friends invited other friends who invited friends of their own. The friends of friends friends didn't stay around long, but after they were gone it was discovered that there were three phones missing. After checking, she discovered that her credit card was also missing. The campus police were called and I must say, I have a whole new respect for the security of her dorm situation. Everyone must pass through campus police security screening. They have to be signed in by a dorm resident and show government issued ID, and have their picture made for a pass. No one gets into the building undocumented. So they have pictures and names for the friends friends who left early. They know who everyone who was in her apartment is. And since the friends friends are known to be students at another state run university, well, they have jurisdiction. And they are taking it personally. I am impressed, but it doesn't make picking her up any easier. It is truly easier to get on an Army base than getting into that dorm.

Not having heard from her, I texted her asking if she'd gotten the phone. She didn't answer. Later, I saw that she was on Skype, so I IM'ed her asking about the phone. She told me that it had come in, but then had been stolen. So here she is, in a dorm with no meal plan because they all have kitchens, with no access to her money to buy food and no way to communicate if she needs to. Getting her money and food and a new phone shouldn't be that much of a problem. But once again, I'm seeing my bank account drained. That's OK. Things will be tighter than expected, but tight doesn't last. The real problem is that she is so stressed, and once again is spilling it on to me in down town rush hour traffic, in the worst city commute in the country. But I managed to give her some cash, go to three stores to find a phone for her and get her to her favorite restaurant. Things should be looking up, right? She tried to activate the phone. The phone told her that she needed to go online to activate the phone. Not a problem, the restaurant has WiFi. I handed her my netbook. She went online and was told that her plan wouldn't work with that phone. I handed her my debit card and told her to change plans. She was about to cry with stress. She asked if I was sure, I told her that she had to have a phone, it wasn't safe to live there without one. She changed the plan and paid for a new one, then tried to activate the phone. She was told there was a problem and she needed to call the cell company. By this time she was at about 110% anxiety. I pulled up the cell company number from my contacts list on my phone and handed it to her and told her to call. It became quickly apparent that she was overwhelmed and shutting down. It wasn't going to happen, but I hadn't gotten this far and spent all this money to leave with her still having no phone. So I took both phones outside and called the company myself. The advisor on the other end was so very helpful. This is the same company that I'd cursed a year ago in this post. They have really changed their tune. I took a working cell phone back in to her, but she was still stressed to the max. We ate a wonderful dinner and I took her home.

She grew up in countryburbia...you know, the out lying suburbs of a major city. The cow pasture is across the street from our house, but the corner where Publix, Kroger, Walmart and Aldi are is 2 miles away. We can walk to the nearest restaurant. And we can go to the mall without traveling more than 5 miles. Still, we go to church with our neighbors and we don't feel overly compelled to lock our doors. Yes, there are gangs here, but they consist of the spoiled brats of VP's who pretend they are "hanging with their homies" and live in $500K mini mansions in country clubs. We live on the other side of the tracks. What does she know about protecting herself from strangers? Well she does now. She knows that when friends invite friend gang members over your phone is best off spending quality time with your butt cheek and your wallet along with anything else of value needs to be locked in your room. Only walk around in groups and always be aware of what is around you. It only takes one time to learn. At least this time it was only at the expense of two pieces of plastic that she could quickly and easily deactivate. But the real victim here I guess was me. Once again I'm picking up the pieces for her; trying to cover the damage of other peoples sin. I guess God will have to cover the damage for me.

Burning Out

2011-09-21T16:06:00.001-04:00

This morning I stood peering in the refrigerator staring at the food. If I get this, it won't be enough protein, but if I add that with it there will be more protein, but now it's over the carb count and I will go over the calorie count....It was hopeless. I finally grabbed the eggs, sausage, cheese and yogurt, but I left the fruit. At lunch I stared into my pantry drawer in my cube and did the same thing. If I eat the whole container of soup, I should only eat half the tuna sandwich, but that won't be enough protein, maybe I should only eat the tuna and not the bread. Or maybe it would be better to eat the tuna sandwich, but only half the soup. If I have the yogurt for snack, I should add pumpkin seeds or I won't have enough protein and I'm low on calories for this time of day. I am going through this at every meal and it's beginning to be a serious problem for me. Sometimes I just don't want to eat because I tired of having to work so hard to keep it all balanced. I love it when I get the test results back and my cholesterol and triglyceride levels and my A1c are spot on, but I tell you, this is hard work. I get discouraged when all the skinny girls are hovering around the bowl on the front counter where they are selling miniature chocolate bars to raise funds for United Way. I get resentful that they get away with eating whatever they want, that they can take the elevator down one level and not feel guilty that they had just passed on easy exercise. I haven't even had diabetes that very long and I really wish it would just go away. When the nurse says, "If you'd only lose 5 to 10 pounds you you can reverse this and go off the medicines" I want to snype back, "yeah, well that was 40 pounds ago. I wonder why it didn't work." I am honestly just tired of it.

Ok, pity party over. Time to pick it back up and get back to work.

Royalty in the Waffle House

2011-09-17T17:09:00.000-04:00

I haven't talked about my genealogy hobby much, mostly because I honestly didn't think that it amounted to more than elaborately researched pulp fiction. But Lizzie is taking a course in human genetics this semester and as part of that class had a mitochondrial dna test done. I saw the results for the first time on Thursday night. It's going to take me figuring out a lot of technical things that I don't yet understand to fully get the impact of what the test is telling us, but what I have figured out so far is exciting. One of the matching people who has also taken the test and who is a male matches through the y-chromosome to the line of Calverts who founded the colony of Maryland, and the common ancestors that we share include my great grandparents. What is more exciting is that through the y-chromosome database, I was able to verify that my genealogy is correct to the Lord Barron of Baltimore. My pulp fiction isn't so much fiction after all. Cool, this looking good. Since the Calvert line I came from pretty much holed up in one small area of Alabama since the signing of the Declaration of Independence, it will be easy to go find paper copies of the lineage and maybe even get some of the stories. I've been thinking about going there for a few days to see if I could find evidence of LQTS in anyone earlier than my great grandfather. Not really important, but with so many aunts and uncles as well as my father and brother dying of it, I'd just like to know.

So hey, I descend from royalty. It still doesn't change the fact that I grew up in a 4 bedroom ranch house in Brookhaven. Oh well, no tiaras for me.

Hyponatremia

2011-08-31T19:32:00.001-04:00

On Saturday I went to my appointment with Dr. B. I was almost excited to be there because I knew that I had lost another 3 pounds and I wanted to see the results of the blood tests from the week before. I was hoping that my potassium levels would be normal, and they were. My cholesterol levels were stellar and again my A1c was 5.0. I wasn't anemic in any of the vitamins that I tend to run low on and my protein and iron levels were good. Unfortunately all was not well. My insulin levels have continued to rise despite getting my A1c under control. I find this frustrating; the reason I have been putting so much effort into weight loss was to get my blood work on target, especially my insulin levels. That has yet to happen. But that wasn't the biggest problem. My liver enzymes have climbed to a level that is three times what they should be and my sodium and chloride levels were very low. This was the second time recently that my liver has shown signs of distress, but not second time in a row. And while I was concerned about my potassium levels getting too high, I had not even considered that I could become hyponatremic. J, Dr. B's NP suggested that I needed to get tested for hepatitis A&E, and that I should consider eating a lot of salt. This is in direct contrast to what Dr. B was saying two weeks earlier. Dr. B was concerned that the amount of sodium I was eating was causing inflammation that was the cause of my almost constant water retention. She suggested that I try limiting sodium in my diet to 1500 gms a day. They ordered more blood tests and said that they would be sending the blood work that they had to Dr. R.

I was expecting a call from L at Dr. R's office and was surprised when on Monday I didn't hear from them. I hoped that it meant that Dr. R thought I could wait until my appointment on the 9th to deal with it. Well, no such luck with that. Dr. R called Tuesday evening right as I was packing up to leave my cube. He said that he was very concerned that my sodium level was down to 124, and that is a potentially lethal level. He asked what Dr. B had suggested I do about it. I told him that she doesn't treat anything but obesity and will refer anything else she finds to him. Dr. R is also concerned about the high liver enzymes that I have and wants to do some tests to see what could be causing the problem. He told me to go back down to the 25 mg a day of spironolactone. I hoped he'd also say to hold the simvastatin and trilipix since my cholesterol is doing so well, but he didn't. He said that he wants to see me early next week and not to wait until the 9th. So I have an appointment with him on Tuesday and he will re-do the errant tests. I am going to ask him to send the results with Dr. B so I don't need to have them done twice.

I'm kind of sad about the spironolactone. I hoped I could tolerate the dosage, but that just isn't the case. At least we gave it a try and there were plenty of watchful eyes to make sure that it was done in a safe way. Spironolactone comes in a topical form and I'm going to ask if that is a safe possibility, but I doubt he'd be willing to push my luck a second time.

Sometimes I feel like my health is a never ending carnival game of gophers. I stomp one condition or syndrome back into it's hole only to have another one of those little devils pop up somewhere else. I sometimes wonder why I try. Sometimes I understand why other people don't.

Lessons learned:
1. Dr R is a very smart doctor and I'm glad that he's cautious.
2. Patently ignore any future suggestion that I restrict salt in my diet

How it wears away

2011-08-30T00:05:00.000-04:00

I have a budget. It had this week being an easy one. It should be an easy one. But last week my brakes started to squeel and grind. I knew I needed new pads, and probably both. I was right, but my brother is handy. I was able to get the job done for the price of parts. Not bad. But when we were going to leave to get the parts, I tried to start my car. No go...the battery was completely dead. I thought it was going to die a year ago, but I have limped along on it. Saturday it was completely dead. I had to get a new one...so much for the wiggle room in my week. Not to worry, I still would be alright...I think...So went the logic. But then a bill that I needed to pay was a bit higher than I expected...don't panic. Things are still getting paid. You have money to eat, and a full tank of gas. Still the balloon is a little closer to danger.Then she calls. Student loans aren't going as we calculated. It will be paid, but their will be no living expenses. Suddenly I'm worried because one of my chicklets is out of the nest and has no wings to fly. I have X amount, and I will halve it with her. She has to have food! So now I'm looking at the week (again) and thinking, I can pay this and have this amount and that will last so long and if only the hscs draft will come in. Oh well, if time has taught me nothing it is that hard times are passing...We will both survive.

Founders Day Cake

2011-08-26T11:59:00.000-04:00

It's Founder's Day here at the Big Brown shipping company. Last year our representatives from one of the agencies that we use came by with chocolate cupcakes just as I was signing my son and grandson in the building. They gave him one and he immediately planted it into his face. It was hysterical. I wish I had a video of it. They came by today with a smaller version of the cupcakes from last year. If Jack were here I'd give him this one to see if he'd face plant it again.

This is why you are fat

2011-08-24T16:27:00.000-04:00

Low Carbing?

My Desk Today

2011-08-22T14:53:00.000-04:00

It's getting a bit colorful in here today.

Sorry

2011-08-22T10:33:00.002-04:00

Sorry about the post below. I was tired and cranky.

So, it's my birthday

2011-08-22T01:27:00.001-04:00

So it's my birthday again and someone Facebooked me to tell me that I was turning 29...Ha ha ha, isn't it cute. The truth is that since I didn't die by the age of 47, 54 means that I succeeded. My room mate from college unfriended me because I chided her for dehumanizing cancer patients with an update that read "Cancer patients only want one thing". No, our lives don't get put on hold because we have cancer. I wanted my children to not be traumatized by this experience. I wanted to go to Matt's wedding. I wanted to be included in the invitation to go to lunch and a movie with my girlfriends...I wanted a normal life that everyone around me saw as impossible due to my circumstances. My needs weren't as simple as my room mate would have liked. So she unfriended me. Should I care? I am tired of being marginalized by everyone who thinks they know what I want or what is best. I had cancer, not a lobotomy...and I suspect that even those people who had a lobotomy are tired of being marginalized. I'm happy that I am turning 54. It beats the hell out of the alternative.

Grand Rounds is Up

2011-08-16T17:42:00.001-04:00

An article from this blog made Grand Rounds this week at Dr. Pullen.com's medical blog. Check out Grand Rounds Vol. 7 # 47 to see the best of the medical blog posts of the last week.

Well now, that's interesting

2011-08-15T14:47:00.002-04:00

House mail received today

Umm, building 2 only has 4 floors.

On second thought it only has 3. Levels 1 and 2 are the cafeteria.

Saturday Morning is Great!

2011-08-14T00:45:00.001-04:00

I went to see Dr. B this morning. I knew that I was down a few pounds and I am down 3.5 pounds. So yeah me, I love it when the doctor knows that I'm trying. I have now lost 34 pounds. But my blood pressure was down a bit. I'm hoping that it was just a good time to check and not indicating that the spironolactone may be too much for me. Dr. B wants another round of lab work, so I will be looking for a Lab Core around here.

I knew that Lizzie was on her way home, so I called after the appointment to see if she wanted to get breakfast with me. She did so we headed to Cracker Barrel. While we were there we had a wonderful conversation. I have really missed conversations with her.

Lizzie needed to pick up a few things, so we went to Walmart. As we were walking in the greeter told me that he liked my new hairstyle. Something about that creeped both Lizzie and me out. I guess I go to Walmart too much if the greeters recognize me. We walked around for a few hours and then hung out at Starbucks drinking an orange mango smoothie for me and iced coffee for her. Hey! don't judge, those smoothies only have 250 calories and they are packed full of nutrition and they have 15 grams of non-meat protein. Plus, it is cold and I don't want hot in a Georgia summer. Not that I ever drink coffee, I'm allergic to it...really I am.

Lizzie had a "date" with her best friend at 5:30 so we came back to the house in time for her to get a bath and wash her hair. After she left, I was hot and sticky and tired of sweating in the heat. I went back to Starbucks to enjoy the air conditioning. On the record, we have effective air conditioning in my house but we have chosen not to use it this summer. We have 2 room units going, but the large unit often gave us electric bills over $700 a month last year. We all would rather spend that money on other things. I personally am spending that money on upgrading mine and my sister's wardrobes. besides, the two rooms that aren't being effected by the window units aren't used during the day. Unfortunately, the rooms are Lizzie's and my bedrooms.

Lizzie came home from her date and told me that she was going to hang out with "the gang" and I know how much they miss her, I missed her too. So I'm not too unwilling to share her even though I would like her to be spending time with me.

So, I have Lizzie back for a short time. She starts college next week. She won't be so far from me. She's only going down into the city. She will be home on weekends. It's just that I know that soon she will be gone from me just like the boys are.

But yeah me! I've lost 34 pounds...

Dr. R this morning

2011-08-10T17:39:00.002-04:00

I have a post from the weekend that I would still like to work on, but today was kind of good. It makes me know that for all the reservations I had about my primary care doctor, he is the right one for me. For the first time ever, I asked a doctor to increase my medication. I usually allow them to choose what medication I need to be on and what dosage. However, the dose of spironolactone that I take is eight times too low for the ideal dose I need to treat alopecia. I am not completely comfortable with the idea of taking that much of the drug. But I am also not comfortable with doing less than everything possible to stop and maybe reverse my hair loss. Especially since yesterday Dr. P was talking about the possibility of doing hair transplants in a year. The idea horrifies me.

Dr. R listened to me and looked at the biopsy report. Then he suggested that we start off taking 50 mg twice a day for a month. Then checking my blood pressure and potassium levels to see if it would be safe for me to continue taking that much of the drug. He said he would consider slowly raising the dosage if I was tolerating it well. It is a great plan. I was concerned about both of those issues myself. So now I know I have a doctor who is willing to listen and work with me. Feels pretty good.

Where I've been this weekend

2011-08-07T15:58:00.005-04:00

Jack playing hide and seek

Jack hit a happy milestone this week. It has been a year since he had a bleed. Yeah Jack! Quite an accomplishment for a three year old who produces less than one percent of the factor 8 required for blood clotting. We had a party that included low carb sugar free cupcakes. After the party we went out to a restaurant called Uncle Nicks Smokehouse. What a feast! We ate on the patio that overlooks the lake, which was beautiful. We ordered the Family Feast which included a rack and a half of ribs a whole chicken, cut up, smoked sausage, brisket and shredded pork, with two sides. We had cole slaw and steamed vegetables. Jalapeno corn muffins are served with every meal. This meal was touted to feed 4. The four of us ate this (Jack may be small,but believe me, he can eat with the best of them.) and Tim and Jenn took enough food home to eat for another two or three meals. And the price on that feast, an incredible $45. It was amazing. After dinner we went down to relax near the lake. That was when Jack decided that we should play hide and seek. He covered his eyes with his hands and walked around counting to ten. I was so relieved when he didn't walk into a tree. On Sunday I was able to take him to see Winnie the Pooh. He hadn't been to a theater much and was thrilled with the movie. So nice to do something with him that he enjoyed.

And that's when my head exploded

2011-08-04T23:34:00.001-04:00

The drama of the dermatologists office visit finally ended today. On Monday around 3:00 I realized that Jan never got back to me regarding the biopsy report so I called Dr. Fs' office again and asked for Jan. They put her on the phone. She sounded very discouraging about getting the report. But I didn't let that stop me. She faxed me a release of information form and told me that Dr. K would have to sign off on it before the report could be faxed. She also said that Dr. K wouldn't be in the office until Tuesday.I signed and faxed the form back to her very displeased that I was having to wait another day for the report. On Tuesday afternoon I called Jan because I still hadn't gotten the report. She told me that Dr. K takes them home at night and signs them, she'd fax the report in the morning. I wasn't a happy camper, but I didn't complain. I waited all day Wednesday for the report, but when it passed 3:30 I decided to give her another call. Jan told me that she had forgotten that Dr. K. had the day off, but she would fax the report in the morning. Unbelievable! If the whole appointment hadn't been so weird, I wouldn't be as uncomfortable with that answer as I was. Still, I was nice about it. Today at 9:00 I called Jan to make sure she would send the report. Jan was on the phone with someone else. I left a message in her voicemail box. At noon I called back and was again told that Jan was on the phone with someone else, but I declined to leave another message. Why should I, it is obvious that Jan does not return phone calls. Instead I decided to pay a visit to the office. When I got there I introduced myself and told them I had been trying to get a copy of my report since Friday, and I was there to pick one up. The receptionist went back to ask Jan about the report and came back to tell me that Jan said that Dr. K had not given her the signed form. I said fine, then I wanted to see the report. At this point, I wasn't really sure the report existed. But I was sure that according to HIPAA laws the office had to show me the report or be in violation. That is when Jan decided to go get the signed request and give me the report. She apologised, and I said thank you and left.

For all that drama, the report didn't say anything but androgenetic alopecia, no fungus's or inflamation or stress related hair loss. I'm in the early stages of alopecia, so that means that there is a better chance for regrowth if I can get on effective treatments. I'm already doing all the over the counter treatments. I have an appointment with Dr. R to discuss the possibility of increasing my spironolactone dosages. I really don't have much hope that he's going to be willing to do that. If he doesn't want to, I can ask Dr. C to do it. He has already said that taking up to 100 mgs would be safe and that he has some patients taking as much as 800 mgs. He is also not concerned that my potassium would go to high. We work hard to keep it up to near normal levels. Still, he may not want to treat hair loss.

So, here I am. Knocking on the door of crazy again. Oh, and I have an appointment with Dr. P on Tuesday for a skin check.... What do I say to Dr. P about strong arming his staff?

Excuse me, have we met?

2011-07-31T13:31:00.000-04:00

I am at KFC getting lunch after church. When I walked up to the counter there was a young father there with two very cute little boys discussing what they wanted to eat. The father looked me in the eyes and said "miss emmy, would you like to go ahead of me us?" And then went right back to talking with his boys. It shocked me for a minute. I live in surburban Atlanta. You do well to know your neighbors. There is no way to know everyone in town. I didn't recognize him at all, but it was obvious that he knows me. I was going to ask how we know each other when they sat down, but they got their food to go. Now this has me wondering. The fact that he calls me "miss emmy" tells me that I probably knew him as a child. Maybe I was his Sunday school teacher or something. Or maybe he is the child of one of the women who were part of the Friday morning womens group that I used to go to when I didn't work on Fridays. I don't know. It's just a bit odd. Nice to know that he turned out so well anyway. Kind of nice to know that I'm remembered by people.

Biopsy Results

2011-07-31T10:04:00.005-04:00

I had an appointment on Friday to get the biopsy results and the stitches taken out. I got to the office on time and back into the room within five minutes. The nurses assistant was there to remove the stitches, and she had them out in less than a minute. Everything was going fine until then. She handed me the checkout sheet and said "You're done." No, nobody had said anything to me about the results of the biopsy. I said this to her and she flipped around in my chart for a minute. She didn't find the results and told me that they weren't there. "Well, where are they?" She told me that they could take seven to ten days to get there, they might not be there yet. I told her that two weeks is fourteen days, the report should be there. If it wasn't, someone needs to call and find out where it is. She said oh and left the room to see if she could find it. She came back twenty minutes later with Dr. Fs who told me that the biopsy indicated that the problem was androgenic alopecia, or pattern baldness. He advised that I should take 5000 mcgs of biotin and use Rogaine for Women twice a day. I had already Googled androgenic alopecia and knew that one treatment is high dose spironolactone. I think that he was pissed that I asked him about it. He said that yes, it could be theraputic and I would need to take at least 100 mgs, but the ideal dose would be 200 mgs. That is eight times the dose that I'm taking now. He didn't write me a prescription for the drug or arrange for any further follow up visits. Good because with the amount of frustration that I was feeling at that point I wouldn't be willing to attend a follow up anyway. I left, but realized after I got to my car that I had not seen or asked for a copy of the biopsy report. Crap! I decided that I would call and ask for them to fax me a copy of the report. When I got back to the office I called Dr. R to ask if he would be willing to write a prescription for the spironolactone. I was told that the person whom I was speaking with would run it by Dr. R and get back with me. I called Dr. Fs's office and asked if they would fax a copy of the report to me. I was told that Jan would be the one who would take care of that and she wasn't in. I was directed to her voicemail to leave a message. Double crap!

Around 4:00 I realized that no one from Dr. R's office was going to get back to me. But I got back to my desk around 4:30 to find a voicemail from Charmaine at Dr. Fs's office. She told me that I had androgenic alopecia and spelled it for me in case I wanted to Google it. Then she asked me to follow up with Dr. Fs in two to three weeks. Really Now? I didn't want to be told the results again, I wanted a copy of the report, and it seemed like they were as unwilling to have me see it as they were to write the prescription for spironolactone. I called back and spoke with Charmaine. I told her that I already knew the results, but wanted a copy of the report. She said that she only calls people on the phone to let them know their test results. She was unaware of what had happened in the office that morning. I asked her about the follow up because no one had mentioned a follow up when I was in the office and the check out person hadn't scheduled a visit. I probably would have refused anyway. This is disturbing on many levels. The first and most profound is that they are calling people to tell them they have cancer. I can't imagine getting that news on the phone. And it furthered my ire that they aren't organized enough to make the call before I came in for the follow up visit. Also, if they were only going to tell me that I had alopecia they really weren't going to suggest any method to attempt to keep my hair. I am really not happy with this exchange at all. If Dr. Fs was my dermatologist, I would be looking for a different practice all together.

As unhappy as I am with the appointment and follow up, I am very relieved with the diagnosis. Men's hair loss is almost always pattern baldness. Women's is a bit more ominous. It can point to underlying illness that can range from a stressful event to life threatening illenss. When I was Googling I was reading about lupus, sclerodermis and even metastatic breast cancer. I have been more than a bit freaked out by the possibilities and that makes me willing to accept just simple pattern baldness. That doesn't mean that I want to be bald, but at least there won't be doing chemo for it.

I wish someone could explain to me why every appointment that I go to has to be a crazy mess. Why can't it follow the normal pattern of arrive, sign in, wait, see the nurse, see the doctor you came to see and get the diagnosis, check out and pay, then leave? I have a skin check appointment with Dr. P next week. I plan to let him know how displeased I am with the way things happened.

Sales Lead Fail

2011-07-28T14:53:00.000-04:00

Dear MMCPHO:
Thank you for directing your letter to FedEx to our office at UPS Corporate Headquarters. We are appreciative of each and every sales lead that you can send us.

Sincerely,
emmy

Waiting

2011-07-28T11:19:00.000-04:00

I get the stitches taken out of my head and the results of my biopsy tomorrow. So of course I'm so anxious about it I can hardly sit still. I think this is one of the hardest parts of having chronic diseases. Waiting on anything is never pleasant, but waiting on medical news is awful.

Who I am

2011-07-26T14:36:00.000-04:00

I took this picture of myself a few weeks ago after getting an new haircut. The picture startled me because for the first time I looked at myself and thought "wow, I really look like a Calvert". My grandmothers didn't like each other. In my entire life I can't remember one time I saw them say one word to each other, and they were next door neighbors. My grandmother Calvert didn't like my mother either, and I'm not sure if the offence started between my mother and my grandmother or between my grandmothers. Still my mother was best friends with my father's sister and she married my father, so it mustn't have always been that way. Whatever the reason, it affected the way my grandmother treated me and my sisters. She would say things to me like "Yes, but you're a Foreman". I honestly never felt like a part of the Calvert family. We would visit occasionally, but not even every time we went to the small town they lived in. As a teenager, I once spent a whole summer there and didn't even contact any of the Calvert cousins. It's a small town, there is no way I could be there and them not know that I was there. But they didn't contact me either. In their eyes I was just another one of those Foremans. It didn't really matter to me. Both sides of my family are large and with as many brothers and sisters that I had, I never lacked for family. Actually, I didn't think much about it until recently, and now it's just a curiosity. I was thinking about it this morning as I was driving to work (my commute usually takes more than an hour each way), and I realized the backwardness of my grandmother Calvert making me feel my whole life like I wasn't a Calvert. If anyone wasn't a Calvert, it was her. I was born into that family, she married into it. I have their genetics, she didn't. The idea caused me to laugh out loud, but then it made me ponder the concept of it. She presented an irrational idea and got away with it because of her authority in the family. I actually believed it until this morning. So all day long I have been watching people and realizing this situation happens a lot. The person in authority makes a statement and everyone acts on it even though it's irrational. For instance, in the cafeteria at breakfast one of the cooks placed one of the breakfast sandwiches on the counter instead of the plate. Then one of the people in line asked to have another sandwich because that one had been on the counter. After than nobody would take that sandwich. It was ridiculous. That counter is clean. There is nothing about that sandwich that was going to infect anyone. At the same time all of the cooks are wearing gloves, but they aren't constantly changing them. The cook will pick up a piece of sausage, put it on the grill and then turn around and arrange another plate of food and serve it. Everyone thinks that the food is cleaner because they are wearing gloves. But actually, not really. They are picking up germs on the gloves as they go, and those germs aren't killing anyone that I know of. Still, if they picked up a piece of food without the gloves they'd probably get fired. It's silly. Can you tell that I have very little to do today?

Bad week foodwise

2011-07-25T20:39:00.001-04:00

It has been a bad week for food with me, and tomorrow night when I go see Dr. Beasley I'm going to be in trouble. The problem is this. These pictures depict my week with food. They will tell her the amount of calories that I've eaten each day, and how many grams of protein, fat and carbs. Right now she doesn't want me to go under 1200 calories in a day and she wants at least 70 grams of protein. I have been way under the amount of calories all week, though I have easily made the amount of protein. The reason has been the heat all week. The heat and humidity that we've been experiencing all week has gotten to me. It makes me nauseous, and gives me the runs. That makes the idea of eating very unappealing. All I really want is liquid with ice in it. I can tell you that 590 calories and 44 grams of protein aren't going to impress her. So I am sitting in McDonalds choking down a Grilled Ranch BLT to add to the calories and protein amounts. I never thought that I'd be force feeding myself on a diet to loose weight.

To make things worse, the heat and the nausea have made me very lax about going to the gym. I bet I haven't gone even four times in the past two weeks. I need to get back to being serious about this healthy lifestyle thing. Oh well, I guess I'm not getting the star patient of the week award this week.

The upside is that I have actually lost weight, so maybe that will be a redeeming grace at the appointment. I hate to have to tell her that I've been a bad patient.

No Video on Sunday

2011-07-24T10:34:00.001-04:00

What's wrong with this picture? The screen above the stage is blank. No video, no words to the songs, no verses, nothing. Our brand spanking new, high tech church will be having a retro Sunday. Luckily the music that was planned was all oldies. Everyone should be familiar enough with the words to wing it. Guess I will be taking this Sunday off.

Yesterday could easily be two blog posts

2011-07-16T15:05:00.009-04:00

Where do I begin? It was a bad day, all the way around. I turned the alarm off too many time and was scrambling to get out the door on time. Of course, I had to catch all 26 red lights on the way to pill hill. I arrived about 10 minutes late. I hate being late anywhere, but especially at doctor appointments. I got into the office and, well you know, hurry up and wait. What can I say. I eventually got into the mammogram room and the radiation tech had to do extra shots, but that's OK. I'd rather take a little more pain than them not be able to get good pictures. After the tech was done she told me to go to the ultrasound waiting area and after the ultrasound Dr M would see me. Dr. M again! I was adamant that no, I have an appointment with Dr. Sh. I had called in and corrected the mistake that someone in their office made on Wednesday. I was assured that I'd be seeing Dr. Sh. I don't know Dr. M. and it is not appropriate to see her. I returned to the waiting room with the tech's promise that she'd change the mistake. I was there for about 10 minutes when she called me back to the mammography suite to tell me that I hadn't been placed on Dr. Sh's schedule so I would have to see Dr. M. I picked up my purse and computer and said, "Well, I'm leaving then. There is no reason to stay." She asked me if I wanted to reschedule and I asked her what the point would be. I had to call in 8 months in advance to get this appointment and it is obvious that my appointment wasn't going to be honored. She said that if there was an issue that Dr. Sh would be in to see me. But that would include me trusting Dr. M, who is a radiologist not a surgeon, knowing what my breast feel like and that she'd catch a change. I said no, I would leave. She asked me to stay and she'd get the office manager. While I was waiting I began second guessing myself. Was I being ridiculous? Why was this making me so upset? Was it because of seeing the NP again in Dr. S's office? Maybe that had a little to do with it, but there was something more.

In any given year I will see Dr's Cs and B every other week. Dr. R I will see at least four times. Dr's K and Cn I will see twice. Dr's L, T, SH and P I will see once. I avoid Dr. F because he is a Cretin and I will see Dr's M and J if a problem comes up. My health care is already so fractionated. I know that Dr. R is supposed to be the gate keeper, but with so much information coming in from so many people, even he has a hard time keeping up. When you start adding in all the NP's and associates and partners, then you add in emergency room doctors and hospitalists it's a whole lot of people. And every time I have to see someone new it's like starting over from scratch. We spend the whole appointment reviewing what's been covered. I'm not taking that medication because my cancer wasn't hormone sensitive. I can't take that group of medications because they prolong the QT interval. I really am allergic to codeine and Oxycontin. Toradol and Ibuprofen tend to work well. I really do love my CPAP and won't sleep without it. I don't smoke, but I grew up in a house full of smokers. I need you to use my right arm for procedures because I have left upper quadrant lymphedema. My t waves became notched and inverted after treatment for cancer. My QT prolongation is congenital. I'm alive because I suck at dying. I'm not making this stuff up because I didn't know what most of it was until I was diagnosed with it. Really, why would a healthy person even know what primary hyperaldosteronism is? It goes on and on. I don't expect my doctors to remember every little thing about me, but if I'm in my oncologists office I don't want to have to say I had invasive ductal carcinoma, grade 3, stage 3, er/pr-, her2neu+++, or explain that I didn't do herceptin or tykerb because of my history of heart problems. I expect that to already be known. I want to see doctors who already know what's going on and I just don't want any more doctors.

So what kind of sense did it make to accept an appointment with Dr. Fs at Dr. P's office? For one thing, Dr. R asked me to make an appointment to be seen by a dermatologist and Dr. P won't be back in the country for another 6 weeks. I've met Dr. Fs before, but not for an office visit. He spoke at a lunch and learn where I work. And frankly, I'm tired of having to clean my hair off of any surface that I'm near. I don't want to go completely bald and I need to get this taken care of. Dr. Fs looked at the pictures that I brought in and at my head and said that I had easily lost 75% of my hair. He asked a lot of questions and was very interested in the fact that I'm already taking spironolactone. He said that there are many things can make hair fall out, but my answers to his questions weren't leading him in any one direction. He seemed to be leaning toward androgenic alopecia, or female pattern baldness. He needed a biopsy to prove it or find out what else it might be. He closed the wound with two stitches which have been making me crazy and gave me a prescription for Lidex for a rash that I have on another area of my scalp. This highlights what I was saying in the paragraph above. Dr. P would know that I'm very squeamish about taking cortico-steroids. They make me fat and mean and I've already taken so many that I'm in danger of them causing problems with my bones. And with hyperaldosteronism, I'm already having issues with my adrenal cortexes. I would just prefer to avoid steroids if at all possible. Dr. Fs didn't know this, and since I'd never heard of Lidex before and the brand name doesn't give me any indication that it might be a steroid I didn't speak up.

After leaving Dr. Fs' appointment I went over to the lab for some blood work for Dr. Cn on Monday. I was looking at the orders while I was waiting and realized that Dr. S had done all the blood work that Dr. Cn wants when I was there on Wednesday. I called Dr. S's office and asked that they fax the results over and then left, grateful to not have another stick.

I left these appointments feeling a bit beat up. I still had one more task in my medical day. My new glasses needed to be adjusted. One of the stems had a screw that was coming loose and the glasses were slipping down my nose. The associate that I saw ordered a new frame for me because she is concerned that I would continue to have problems with this one. I will be able to pick it up next week.

When I got home, I did something stupid. I went to Dr. Google to find out about androgenic alopecia is. I can tell you, it really made me depressed. But what was more depressing was a whole list of things that make your hair fall out that I really don't even want to think about. And of course, since all these fall into the "oh shit" category of diagnosis's, I'd have to have all the symptoms of the worst two. Dr. Google is a terrible diagnostician, and a generally scary physician. The only thing he's good for is public health information on things that other doctors diagnose. And then what do you do with that information. Doctors don't even look at the reams of print outs that you take in to them. Who can blame them, it's all stuff they've read before. I think I need to ignore Dr. Google and wait for the results of the biopsy.

All in all, it was a crash and burn type day that left me with nightmares all night.

Not now, sometime later

2011-07-15T21:13:00.000-04:00

I had planned to write about my medical day tonight. My surgical appointment was rough and stressing and my dermatology appointment included a biopsy. The biopsy was no big deal, but it has left me feeling headachey and shocky. So I will try to write about today tomorrow, or at least sometime in the near future. Tonight I'm going to be holding ice to my wound and resting.

Morning Mammography

2011-07-15T00:30:00.000-04:00

My mammogram appointment is god awful early in the morning. I'm supposed to be there at 7: 40 for my 7:55 appointment. Uggh! I hate waking up early. The appointment will last 3.5 to 4 hours and when I leave I will either have an all clear or we need to look more closely at this report. But what bugs the hell out of me is during that time I will ring up a $12 parking fee. I know for sure that they aren't paying the attendant $12 an hour, and the lot has more than 200 spaces. Why does the parking need to be at such a premium. Aren't they making enough from my office visit? Just saying...

After I leave there, if I have enough time, I will get lunch somewhere close by and then go to my second appointment of the day. I will be seeing an associate of my dermatologist to determine why my hair is falling out. I went on to Facebook today to get him pictures of me with hair so that he could get an idea of how much of my hair that has fallen out. Even I was shocked. I will bet that it is at least 75%.

The other thing I would like to accomplish tomorrow is to get my new glasses adjusted. They keep slipping off my nose, especially when I'm sweaty. I may go to the gym after that, and then on to see a movie or two. Hello weekend...I am glad that you are going to give us a break from the heat.

Bate and Switch, why am I surprised?

2011-07-14T00:17:00.104-04:00

I was on my way home and was kind of hungry. But it's hot and the last thing I want to do is turn the oven on to heat the house up. Also, in the morning I have a breakfast meeting and the fare is bound to be muffins and bagels. Kind of hard to reach my 70 grams of protein eating that. So I decided to stop by the BP on the way home and pick up a couple of protein bars. I know that the Kroger across the street sells the same bars for almost a dollar less each. But that would mean that I'd have to walk all the way through the store and find the bars then likely wait in line to get them. I decided that the extra cost would be worth it. The bars were on the shelf, and had a tag that said they were $2.79 each. the tag even had the Met-Rx logo it, and the description Protein Plus. It was about 20 cents less than I was expecting so I was happier about buying them. But when I went to the register the clerk told me they total was $8.11. Umm, excuse me? I asked him how much he'd charged, and he told me they are $3.79 each. I said no, the tag says they are $2.79. He said the vendor had moved them around and the tags were wrong. I told him the tag had a logo and a description. He asked me if I wanted to buy something else. NO! In fact I'm not even going to buy these and I won't be back for anything else ever. The Kroger had them 10 for $10. I bought 20 so I will have them available when I want them. One dollar or more than three...I'm always in for a deal.

I probably would have been upset and walked out of the BP anyway, but it was made worse because it was compounded by two things that happened earlier in the day. Yesterday was my oncology appointment. In January I postponed the appointment so that I would be able to see Dr. S. Still, when I got to the appointment I was seen by the NP, Q instead. When I asked about why my appointment had been switched I was told that at this appointment, I would see the oncologist. That didn't happen. Q came into the room anyway. When I pointed out that I'd been assured that my appointment was with Dr. S she said that he was busy with a new diagnosis, and if I wanted to see him I'd have to make another appointment. I'm speechless. I would have waited, I've waited in that office so many times, I plan for it. I was disappointed. Q asked if there had been any changes and I told her about the x-ray and the diagnosis that there was a thickening in my fibula that was causing pain. Her only reaction was that she'd check my blood work. Seriously, Dr. S has sent me to have a CT scan just because I had a headache. She was shrugging off an abnormal x-ray without looking into it. She did the physical exam and the only thing she did that remotely seemed like she had a clue was check for abnormal axillary nodes. But it was on the side where the nodes have been removed. She just wasn't giving me anything to be confident with. When I met with the doctors at Vanderbilt, there was a question about the total dose of Adriamycin that I was given. The doctors at Vanderbilt seemed to think that it was 240 mgs, while I had been told in the past that it was 450 mgs. There is a big clinical risk factor in the two dosages, so I wanted that cleared up. She said that she'd have to go back through the record to calculate it, and that she'd get back with me. I don't have a lot of confidence that she will. This is the second appointment with her that I have had where she has not answered my questions and the second of three where she has dismissed issues that are of concern to me. I have not seen Dr. S in two years even though I keep all of my appointments. Can I even claim to have an oncologist? I am on the edge of looking for another provider.

I went back to my office upset and angry about the appointment that I had just left. It was hard to work. It got even harder when I came back to my cube to an e-mail message asking me to confirm my Friday appointment with Dr. M at my surgical oncologists office. Excuse me? I had an appointment with Dr SH and have never heard of Dr. M. I don't know who she is. I called the office and was put on hold. After what seemed like 20 minutes I was sent into a voicemail. I left an "I'm very unhappy with this" message, with information to call me back, but no one did. Instead I got an automated text message telling me that my appointment was with Dr. M and was at 7:55. No! no! no! no! no! Not going to happen! I have to call 8 months in advance to get that appointment and I'm not going to agree to see a doctor that I have never seen before and don't know. Most of my efforts to object met the same voice mail. Finally, after calling the office manager I got help. My appointment is with Dr. SH. But it will be a work-in because my appointment was scheduled with Dr. M. How did that happen? Who decided that Dr. M is my doctor? I still don't know who she is.

So how are my experiences with my doctors and the convenience store clerk different? At the convenience store I had the option to walk away from the purchase. And lets face it, a mistake in pricing isn't going to adversely affect my health. My doctors on the other hand, offer me no choice. They think that who my providers are is their decision, not mine. If I get up and walk out, I will still get charged for the appointment and will be labeled as a difficult patient. How is that fine with anyone?

I don't know why this arrogance surprises me. I should come to expect it by now. I should have another option, but I don't. I have a painful thickening of my fibula and a NP for an oncologist. How is that acceptable?

Beneath the surface

2011-07-08T12:17:00.001-04:00

I have been silent here for a while. Only posting the safe things, but not the ugly things that lie just beneath the surface. I'd much rather put on a pretty smile, tell you that everything is fine. That I'm fine, even when I know that I'm not. That's just pretty much how I roll with things until they go so deep that I feel that they are capable of drowning me. I think it's odd that I can see this in myself, but it always surprises me when I see it in other people. It surprises me even when I know that it's there, but then it makes a stand and is out where everyone can see it.

Having survived childhood and cancer, I have a lot of scars on my body. Some of them are in places that can be seen but time has made them so thin they are barely noticeable. There is one on the palm of my hand that I got when I was eight and I tripped on a tree root and landed on a tent stake. It is so well healed now that I have to flex my fingers to make it visible at all. A serendipity about that scar was that my ex husband had a matching scar on his hand that he got falling out of a tree when he was eight years old. In my youthful nietivity I saw it as a sign that we were meant to be together. Well, I guess that theory didn't pan out. And there is a scar on my forearm that when it first healed was large and purple, but the years since I was 14 have turned it just slightly more white than the skin surrounding it and it has shrunk in size. If you were a med-tech studying my arm to find a vein you might notice it,but no one else ever does. The scars on the surface shrink and fade with time and age. Even the scars from my surgeries for cancer are fading away, looking like a fine white line circling my left nipple and extending toward my arm pit. The scar where my port-a-cath was now resembles wrinkles near my shoulder than it does the wounds that the two surgeries left. Even when people see them as I'm changing bras at the gym locker room, they don't notice them.

The deeper scars that cancer caused, the ones that reach into my soul, have not fared so well. It's the same for many of the deep scars left there by things like being an Army brat who didn't know her father as a young child because he was so often away for years at a time. Scars left by the rejection of family and friends who didn't have the wisdom to accept me for me, instead of trying to force into the mold of who they thought I should be. And definitely the scars of being abandoned by the man who made a covenant to love me and then didn't. Those scars reach up from inside and shake me to the core sometimes. I have been dealing with that a lot lately. Watching my grandson's trying to interact with their father makes me want to weep. Seeing a soldier hug his wife and a young child when he returns home brings tears to my eyes. Watching friends who are picking apart their marriages with judgemental condemnation of their spouse makes me want to confront them with the reality of what they are doing. But every time I talk to them it is through a veil of tears. I can't make them hear or understand the gravity of what their attitudes and actions is causing. Scars left on the surface of the soul don't turn into fine white lines that shrink away with time. They remain and color actions and reactions, attitudes and abilities for the rest of your life. Two things lately have highlighted this for me in dramatic ways.

The first happened late last week while I was at work. A co-worker, one of the manager's that I support sent me an e-mail. She had gotten a request and wanted to follow through with it. A friend of a child with Down's syndrome had written her and told her that this little boy had recently been diagnosed with leukemia. He loves tee shirts and this person was organizing a campaign to get as many tee shirts for the boy as possible. He was writing companies and asking for us to send a tee shirt directly to the child. He uncannily sent the request to the one person in our company that would be shaken by the circumstance. Peggy had a brother with Down's syndrome who died of leukemia. Her brother's death left a deep scar in Peggy's soul. I know this because Peggy and I had discussed it one time when she came to visit me on the oncology ward at St. Joe's. Of course we would send the child a tee shirt and I threw in a backpack too. But this simple request, that we were honored to fulfill touched the deep scars that cancer has left on both of our souls. Like the matching scars on our hands that my ex husband and I had, Peggy and I shared this scar. We were both a bit weepy that day.

The second thing that happened was that Lizzie called me one evening upset by something that had happened at work that day. She had been waiting on a table that was occupied by a man and his two sons and a toddler aged daughter. The man and his oldest son had been having an argument when the son got up and ran out of the restaurant. The man ran out after him and the middle son followed him leaving the daughter at the table alone. Lizzie sat with the toddler as she waited for the father to return. The situation touched deep into her soul, not only because it is sad and wrong for the family to leave the little girl alone, but because she saw the deepest hurts in her soul revealed by the scene. God gives us those moments to clarify and get us to confront our pain and our fears. When Lizzie was seven, my oldest son left for college. Shortly after that my ex husband moved out of our house and in with his girl friend. Quickly following this, my middle son joined the Army and went away to basic training. In her mind, she had been abandoned by them in the same order this little girl had just been abandoned by her family. This scene had ripped through the surface appearance of "everything is great" that she had portrayed and revealed the scar that was lying beneath. When she told me the story my twin scar of abandonment was brought to the surface too. The sadness of that time and the frustration that I will never get her to see that she wasn't truly abandoned, because her reality is that she was left behind. It showed another soul scar in me too, that I don't think Lizzie truly understands. I could never get her to see that I stayed with her. I was there and I was not enough. It really hurts that I was not enough. The image of her curled into a fetal position wailing "why does everybody leave me!" will never leave my soul, or her's either. The scar will never get smaller or blend in with the surrounding skin. It will only lurk beneath the surface until something comes up to bring it back out into the open.

The scars that cancer left on my skin are nothing compared to the scars that it left on my soul. When people see me, they don't even see the physical scars. The scars on my torso are covered by reconstructive surgery and well hidden by clothes. My left arm is swollen with lymphedema, but you'd have to be comparing it to my right arm to even notice. The scars that are left on my soul are monsters that lie beneath. They are brought up to the surface at times like now when I am waiting to see my oncologist to see if the ominous burning pain and thickening of my lower fibula is a metastasis. It shakes me so deeply that I have difficulty articulating it. Other than what I've written here and spoken about with my doctors, I have not mentioned it to anyone. As if voicing it will make it real. Even with my doctors, I have not said "can we see what this is because I'm afraid it might be breast cancer."

Waiting to see a dermatologist to determine what is causing my hair to fall out is equally as frightening. On the surface of my soul are scars from every time I have been given a bad diagnosis, heard a doctor tell me that this is potentially fatal. It is why it is still shocking for me to see the diagnosis of type 2 diabetes on my PHR anew after follow up visits with my doctor. I don't want another pill or diagnosis. I don't want to have to put one more thing on that all too long of a list of past medical history. It is embarrassing when I have to share it with another medical professional. And worse, when they roll their eyes and don't believe that I have these things it cuts a little deeper into my scarred up soul. I don't put anything on the list unless it has a measurable test and can be verified by something other than a diagnosis by elimination. But I don't want to be bald either. I'm rather tired of constantly having to clean up my hair and leaving hundreds upon hundreds on DNA markers everywhere. So my fearful soul consults Dr. Google, even though I know that he is always wrong and can't be trusted. He is only a good source of information after a definitive diagnosis has already been made by someone who actually went to medical school. The things I read frighten me and make me angry at my body for failing one more time. I go around with a smile and tell everyone that I'm fine and that everything is good because I just can't bear the shame of one more health problem. Sometimes it seems like all I am is a health problem. I would love to go back to that time when I was the lady that ran the video ministry and sang real bad in karaoke. Who went to field trips and drill meets and organized class reunions. Because even though I still can do those things, I'm still that lady who is sick all the time. It stinks.

So now it's time to paste on a smile and cover all those scars one more time. Try to remain a part of this life and not be a medical statistic. I have to remember that everyone has scars. It's just part of living. Sometimes I'd just like to live it a bit more transparently.

2011-07-03T16:29:00.000-04:00

I'm in Fort Stewart spending the holiday weekend with my son and his family. Let me tell you, the South is hot in the summer! But a wade pool is just the thing to cool off in. Clifton and Tony had a wonderful time splashing around today. Tomorrow we will go the the fair and concert and fireworks. But today was a good time in the front yard washing cars and cooling off in the pool. I guess the boys won't need baths tonight.

Physical

2011-06-25T15:16:00.002-04:00

Yesterday I had my annual physical, about six months late. Yeah, I know that it's not a good idea, but I see this doctor every three months anyway so it seems so pointless. Especially when every other doctor I see orders the same tests. So anyway, I had a few problems that I wanted him to address; it seemed like a good time to look into them.

The least scary of the problems is that I have been losing my hair in groves. I'm able to see my scalp and I'm getting tired of constantly having to clean up my hair. He seems to think that it is a combination of things. Stress is a major cause of hair loss. He also pointed out that it has been 7 years since I lost all my hair to chemotherapy and hair has a 7 year shelf life. My hair is all dying out at the same time rather than staggered as it should be. He suggested that I use Rogaine to combat this. I'm giving it a try, but I'm telling you that my first impression is that I don't know about this.

The second problem is a lot more ominous. Since the early part of the winter, I have had a burning ache in my leg just above my right ankle. At first I thought that it may just be the effect of cold weather on old injuries. But with the temperature rarely getting below 90, I can't use that rationality any longer. Then I was hoping it would be just simple tendinitis. Actually I didn't really want it to be tendinitis because that would mean a course of steroids, and I don't like steroids. They make me fat and crazy. But that would keep the rabbit from becoming real. Unfortunately, the x-ray showed a thickening of the bone and that isn't so easy. Breast cancer mets to the bone are almost always lytic, or thinning of the bone. But rarely they can be blastic, which is a thickening. Also mets are rarely found below the knee, and this is right above my ankle, and there are calcifications in my ligament that aren't usually seen in breast cancer mets. So, it isn't really behaving like breast cancer, but still I have to get it checked out. I have an appointment with Dr. S in the middle of July, so I will talk to him about it then.

Dr. R. gave me prescriptions for Rogaine and for a topical NASAID and gave me some samples to get started. They are temperature sensitive so I am keeping them in my handbag. My bag is beginning to look like a haphazard pharmacy.

Believe it or not this happens almost daily

2011-06-21T15:15:00.000-04:00

Did you think about this before you sent it?

Really? You sent it to UPS Corporate Headquarters. Are you trying to solicit our business? Maybe you should start over and try again. We'd like to show you what we can do for you. You will love our logistics.

Food has been a challenge lately

2011-06-20T16:04:00.000-04:00

I finally got the house to myself yesterday. I didn't want to cook for just myself, so I ate out. Sweet Tomatoes (Souplantation) has been advertising a Sunday breakfast buffet for quite a while. Their advertising show a beautiful buffet overflowing with yummy breakfast foods. That wasn't exactly what I found when after I paid the $11. The salad buffet was stocked, but who wants salad for breakfast? The only breakfast meat they offered was egg substitute. They had a few quiches and their regular assortment of muffins, but no real protein anywhere. It was very disappointing. After church, a friend and I went to a local restaurant that she likes. I ordered the fajita salad, and again I was disappointed. It just wasn't that great. I ended up just eating a protein bar for dinner. Then today, there was a substitute grill chef in the cafe'. I asked for two scrambled eggs with cheese. Instead of using a whole ladle of egg for each he only used half for each. Thankfully the cashier only charged me for one egg. Apparently I wasn't the only person who complained. Everything at lunch was a carb except for something they call Monterrey Chicken. It was a small chicken breast with guacamole and cheese on top. I got that but it was so dry I couldn't finish it. So here I am at break eating another protein bar and considering the fact that I need to start bringing my lunch again. I know I should stop complaining and be grateful that there is food. But instead I decided to blog my pity party.

They don't sell this stuff in Woodstock

2011-06-19T16:52:00.000-04:00

Fiesta Farmer's Market
Buford Highway, Chamblee GA

Sorry for the extra large picture, but I wanted to be sure you could read the signs. Yesterday, my day went like this, I woke up to find my brother and sister still at home. They told me they would be in North Carolina and I was being selfish and was looking forward to having the house to myself for a few hours.

I went to breakfast at Cracker Barrel and that made me miss Lizzie that much more. As I was sitting there feeling utterly sorry for myself a couple walked in with their two young children and sat at the table directly behind me. I was back to back with what appeared to be a three year old. Only this one did not act like a three year old. He kept emitting shrill screams at every slight offence. I almost wanted to offer them my biscuits to fill his mouth with while he was waiting for their food. While I was talking with the waitress he screamed especially loud and threw a table knife that hit me in my shoulder. That was the one and only time I heard the parents address his behavior. His father angrily told him to quit and his mother apologized to me, explaining that he was tired. I already knew that. You could hear the tired in his screams. It took every ounce of tact that I had to not spit back "Then why are you not at home making him take a nap?" but I didn't. I paid for my food and went to Starbucks hoping to find a more mature clientele.

At Starbucks I read a email from Lizzie that said she needed a resume' but didn't feel she
had enough experience to put in one. I emailed her and told her that just because she
didn't have a lot of work experience didn't mean that it would look bad on a resume'. To the contrary, having held a job with only one company while in high school and the first year of college speaks volumes about her dependability. So, I wrote a resume' that included her work experience and highlighted her academic success and AFJROTC experience. I was having trouble with chemo-brain and was unable to pull the words up for some of the things she did, but typed in a description in parenthesis and she can change it with the proper words. Many blog posts remain drafts because chemo-brain gets in my way. It's very frustrating. After emailing the resume' to Lizzie, I jumped on Facebook and found this picture on a friend's page. After looking at it for a while I decided to take a trip south to visit the farmer's market. I mistook Buford Highway Farmer's Market for a farmer's market that opened up in the neighborhood that I grew up in. The one that I actually went to is called Fiesta Farmer's Market.

When I was growing up Fiesta Plaza was called Buford Clairmont Mall. It was located a little less than a mile from my house and had white bread stores like New York Card Shop, Woolworths and Winn Dixie. It also has a movie theater, which was a big draw for me as a teenager. Needless to say, I spent quite a bit of time trolling the mall. Now it is called the Fiesta Plaza and has many ethnic shops that carry full lines of items for the Spanish, Chinese and Ethiopian customers that frequent there. The old neighborhood has changed quite a bit. But it was well worth the trip. There were many things in the market that I had no idea what they were of if they were a carb or not. But clearly a full half of the store was fresh fruits and vegetables that were very modestly priced. Another third of the store was fresh and frozen meat that was equally modestly priced. I was able to get a large pack of chicken tenderloins, 2 roasts, four ribeye steaks and a package of chicken drumsticks that were so large I was wondering if they were chicken or turkey legs, as well as enough fresh vegetables to last the week for $44 and some change. I plan to go back soon and taking a few friends with me. But I will tell you here and now, I saw some things that I wasn't aware they sold in a store in the USA.

Unforgivable

2011-06-17T00:46:00.000-04:00

I have spent the last 11 years of my life bitter and angry at Joann, and at Tim for loving her. Then tonight a friend wrote on Facebook,

"Therefore thou art inexcusable, O man, whosoever thou art that judgest: for wherein thou judgest another, thou condemnest thyself; for thou that judgest doest the same things." (Rom 2:1) It is often true, that what we don't like in others; we don't like in ourselves. Leave it to God to judge; for we will all be judged one day. Good Night and God Bless...Pray!"

Ok, this was a friend that I went to elementary school and Pioneer Girls with. She bullied and tortured me. She was never nice. I wrote back,

Isn't it wonderful to know that we are totally and wholly accepted and loved in Christ. God could not love us more for anything we do. And nothing that we can do, that can happen to us or that others can do or say about us will ever make Him love us less. We are loved now just as we are.

and then I realized that even while she was daily humiliating me, God loved her totally and wholly no matter what she was doing to me. But at the same time He loved me totally and wholly. And when that was hard to wrap my mind around, I realized that all along that He loved us both. He took the last 36 years and a whole world of spiritual growth and technology advancement to show me that we have the same heart.

Then I thought about Joann (the person that broke up my marriage) and that the same truth applies to her. I'm having more trouble with this one. I can't imagine Joann and I ever being Facebook friends, or encouraging each other with scripture. I have been angry that God loves her at all. But I can't change the fact that He does.

I have a lot to wrap my mind around.

Missing Birthdays

2011-06-14T23:45:00.000-04:00

It was my daughter's birthday today and I'm kind of sad and missing her. This isn't the first one that she ever spent away from me; you'd be surprised at how many camps have their weeks in the middle of June, but...well, I don't know. This one feels different. She isn't with anyone who I actually know well and I'm not getting happy pictures of her blowing out candles. It's hard. I think that the first birthday that she ever spent away was when she was 12. I was in chemo at the time and I was glad for the distraction for her. I was glad that my church family who were the ones running the camp knew how hard it was for her and that it was her birthday. So they threw her a big party with cake and balloons and presents, because that's just the way this part of the body of Christ rolls. If she'd been with me she would have been watching me sick from chemo that day, not being able to lift my head up from the pillow for anything more than trips to the bathroom.

I talked to her. She said that she'd applied for jobs all day and hung out on the boardwalk. I asked her if she'd done anything special, and she said no. She didn't think anyone other than Thomas knew it was her birthday. That he isn't romantic enough to bake her a box mix cake or, I don't know, take her to Arby's, kind of worries me. Her father was like that and it hurt my feelings on too many occasions. Still, she seemed like she liked where she is at. She told me that she'd applied to a very close-by restaurant that she was interested in. I hope they were enchanted by her southern belle appeal and will hire her right away.

It just feels wrong not having her with me. Hell! It feels wrong not having any of my kids near by.

19 years ago

2011-06-14T01:17:00.000-04:00

Nineteen years ago I was in labor and watching the tonight show. Dana Carvey was on it and a nurse kept coming into tell me to quit laughing so hard. Who was she? I remember Dana Carvey, but she only has a few hours in my memory. My daughter was born at 7:22 the next morning and has a wonderful sense of humor and timing. Happy birthday Lizzie...Many, many more.

Depression and disrespect But

2011-06-13T00:42:00.005-04:00

I have been struggling with depression today and that is hard enough. But how I dealt with it today wasn't in a positive day. I spent the day reading a lot of blogs, and unfortunately that isn't a good idea. I read a lot of blogs of medical bloggers and have come to the opinion that many of the doctors who blog feel that they are superior to their patients and so it is OK to judge them. Sometimes the judgmental attitude is blatant and in your face, as in this blog. He is actually very funny and to tell the truth, the most hits I've ever gotten on this blog was when he used one of my posts when the hosted Grand Rounds. But it makes me wonder first, why he just doesn't find another profession and second, what are the attitudes that my own physicians are having about contact with me. Sometimes the attitudes are more subtle. These are the ones that I worry about, like in this post. This is a guy that practices in the same city that I get treated in and after reading that post I wanted to just shake him. I know that he was just ranting and the post doesn't seem to address a single point, but many. I understand that. There are situations that bother you on many levels and for many reasons. I can understand that, I have been there often. If you didn't follow the link this post makes no sense, so it isn't worth reading. He is talking about a tear in his shoulder muscle that has been troubling him. In the beginning it seems that he is discussing his ability to self refer and his contempt for reaching your out of pocket, so you decide to use the system to receive necessary medical attention. Yes, people are more willing to use their benefits if they have already reached their out-of-pocket. That is a natural reaction and I don't know anyone from the CEO of the Fortune 500 company that I work at down who doesn't do this. We aren't scamming the system. We have met our part of the agreement and now are using our benefits. At the company that I work at, we are told that this is part of our total compensation package. In other words, how I get paid for the work that I do. I am not scamming the company that I work for, the hospital that I'm at or the insurance company who covers me. This is and agreed upon contract.

But then he takes a different turn and one that I could almost applaud. He derides the nurses' instance that he should see the NP instead of the Surgeon that he came to see. Look, I understand that an NP is OK to write a prescription, treat strep throat or perform a pap smear. Regular routine medical care is what they should be monitoring. But when there is a known problem, I want the expert that went to medical school. I don't want the practitioner with in house training. So when the NP sees me at my diet check up or looks at my normal blood work and tells me that my kidneys are working fine, I'm fine. But I don't want to see them at my oncologists office and it offends me that they think that's OK. I see both the NP and the EP at my cardiology appointments so I don't mind so much seeing both of them, but I'd be pissed if I thought both of them weren't perusing my ekg. But his argument was as follows:

" That might go over well with a public that accepts health care at face value, but it's not OK with me."

In other words, "Regular patients don't understand the difference in medical training, but I'm an insider and I do. Because I'm a doctor, I deserve better care." OK, he deserves the services of a surgeon because he is a doctor? Are you kidding me? I think I deserve to see the surgeon because I had stage 3 breast cancer and for the rest of my life, I am at a real risk that it will come back, or that I will produce a second primary cancer. Which argument would you think holds more value? I think that I need to see the EP because I have a finicky congenital heart condition that is so rare that most doctors who aren't EP's won't recognize on an EKG. If you were facing a choice of who gets to see the EP or the NP, who would you choose? It disturbs me that he thinks that he is better and more worthy of the surgeons attention because he is a doctor. And it also disturbs me that because the surgeon only sees him because he was willing to leave the office.

Then he goes on to a dissertation on who pays what depending on whether they are insured, the insurance company, or the hospital. OK, I can agree that we are all gaming the system. There are too many people who aren't able to pay today, but then the hospital over charges the patient and the insurance company to make up for those who aren't able to pay. The insurance company then limits the amount they will compensate and the amount that the covered patient is required to pay to compensate for the over charge. The people who get burned are the ones without insurance, who by the way are the ones who use the system because they can't pay.....really? How does this work? He's right. We are all getting screwed royally.

But my biggest gripe was that he expected to see the surgeon because he is a hospitalist and thinks that he is more deserving of seeing the doctor because he is one...really? Give me a break!

Off Day

2011-06-12T16:01:00.002-04:00

Lizzie has left for Maryland for the summer and with Tim now living in Alabama, I feel very much alone and pointless. Today the feeling is very heavy. I guess I'm beginning to realize how much of myself was wrapped around being a mother. Now that the role is diminished, I feel as if I don't know who I am. I know that this is a temporary emotion, but I'm not enjoying having it hanging around today.

Wow, I can actually see!

2011-06-11T16:11:00.000-04:00

I picked up my new glasses today and I'm impressed with them. I was feeling a little anxious about them during the week, because the style is different than what I usually get. But when I put them on, I knew that I made a good choice. And oh yeah, I can actually see. Seriously, I only have 8% vision in my left eye, but with my new glasses I can close my right eye and still read. I am impressed.