Leap year post

I have been told that you should post on leap year simply because it won't come around for another 4 years. OK. But it is of the days that makes me sad, like Valentines day. When I was married, I always made sure my ex got a big bunch of roses and a special meal with a gift. Hoping that he'd get the hint. He never did. I only got a flower on Valentines day the year my daughter was one, and that was because he was getting her one. I never got them on mother's day and never had them in the hospital when our children were born. See, it's a sad day. Somehow, my boys picked up on my disappointment and learned to be romantic with their wives. I don't know why that happened, but I'm glad it did. Still, on the commemorative days, I just get sad.

Uncomfortable

I was driving to get lunch today when B called me to remind me of the baby shower for a new home group member. I'm glad she did because I'd completely forgotten about it. The member said that she had most things as this was her third boy, but she needed things like diapers and wipes, so I took her at her word. I bought her both along with some incredible books that I found in the bargain bin. They were beautiful. One was the words to Arise and Shine and the other was a lovely illustrated view of the 13th chapter of 1 Corinthians, Though I speak with the tongues of men and of angels...I couldn't resist. The book was too beautiful. I may stop by tomorrow and buy one for myself. I find it curious that each one of my children in babyhood ripped that particular page out of three consecutive bibles. But I love the chapter, seek to make the chapter a primer for my love. When I got to the party, N1, J's ex and N2 (both the same name) the N who keeps badgering me were already there. B is my close friend and I know that she will cover me. So I wasn't too worried. I knew that N2 would not be comfortable in her house. Lord, politics should never mix with religion. When I sat down at the gathering N2 immediately started to tell me that she would not comment on whatever I chose to eat, which I appreciated. And the party went very smoothly until we were all done with the snacks. We were at the games/discussion part of the party and it was better than most that I have attended, when B looked over at me and said, there are cupcakes and brownies there, obviously wanting me to lead the procession to the table. There is just truly not one dessert that I will or can eat unless you want to make it without flour or sugar. I smiled and stated that I don't eat cupcakes. B, whom I love let it drop, but N2 got up and went to the table. Everyone followed her lead.  After the party when everyone was leaving B asked me if I wanted to take some quiche and fruit salad home, and I told her no, I don't eat carbohydrates. Even B was shocked, asking what I do eat. I told her that mostly I eat meat, eggs, cheese and non-starchy vegetables. Then N2 who was standing close by said "so this is forever?'" to which I replied "only until we go home, and then I'm eating anything and as much as I want."  N1 said "You need to back off" to N1, but N2 had already come to the conclusion and said "OK, from now on I won't comment on what you eat even though I think it may be wrong.

Two things came from this exchange. The first was that even with my relationship with J, N1 still supports me. And the second was that N2 just didn't understand. I know that she wants to control everything. But she finally accepts this is an area that I have to control. Such a relief on both levels. It wouldn't have happened if I was anywhere but B's. I truly love B...She is the second De in my life. I don't know why I am so blessed with these friendships. I sometimes feel so undeserving.

How deeply they don't get it

You can't look at me and know that I am chronically ill. I think that's why people don't see when I'm struggling. On Thursday I took Mollie a gift card that she earned by filling out the health assessment for our health insurance company. There is a good sum of money on that card and I knew that she needed it. We went to dinner at a restaurant near her dorm room. I am really unfamiliar with that part of town, so I trusted her to guide me. I parked in a lot that was maybe a block and a half from the restaurant, and started to walk there. I started to go one way to the restaurant, but Mollie said that it was the wrong direction and I trusted her. We then proceeded to walk in a two block square around downtown Atlanta, and it was all up a steep incline. When I got winded and had to slow the pace, she turned around and teased "Mom, you aren't that decrepit!" Ummm, yes I am. I snapped at her to cheer up because she shares my crappy genetics. She blew it off, but it's true. I was shocked at how unaware even she is to my limitations. I go to work everyday and I don't look sick, so I must not be. It made me sad that she doesn't understand. When we arrived at the restaurant my heart was beating wildly and I was feeling sick at my stomach as well as misunderstood. The rest of the dinner went equally as badly. She apologized when I dropped her off at her dorm, but I was so disappointed and hurt, I cried all the way home. I know that she doesn't use a filter with me because she feels like I am the only safe person in her world. Still doesn't keep it from hurting when she misjudges me.

Last night T. from church decided to have a singles game night at her house and J. asked me to go. It was kind of weird to go as a couple to a singles function. But I went and took a cheese and meat tray for snacks. The rest of the snacks were predictable, chips, cookies, popcorn and some honey roasted  nuts. I ate some of the cheese and sausage from the tray. While we were in-between games N. went to the snack table and grabbed the plate of cookies. She sat them down in front me and said, "Have a cookie, they're good." I just smiled and said "no thank you, I'm fine." Then she said angrily "Oh for Heaven's sake, one cookie isn't going to kill you!" That's when J. angrily told her to back off and T said that it didn't hurt her feelings that I wasn't eating the cookies. But N wouldn't back off and said "If your diet is so good why are you always ill?" I told her that I follow a good diet because I am always ill, and that wasn't going to change. Then J. stood up and told T. that we were having a lovely time, but it was time that we left. Then he turned to N. and said that my diet wasn't anyone else's concern but mine. We went to Waffle House to calm down and talk. But while we were there both T. and N. called to apologize, and I could tell that N. meant it, but that she still doesn't understand chronic illness. I'm sure that T. and J. don't really get it either. I mean, they all have the aches and pains of aging, and a few of them have high blood pressure and pre-diabetes, but they don't take it very seriously. And they certainly don't have to actively work at staying healthy enough to stay out of the hospital. N. at one point in her apology said that the only time she'd ever been in the hospital was when E. was born. To which I could only answer that I was there 18 months ago afraid that I was having a heart attack. All she said was "Well you didn't have one." which I know of course. But the diagnosis still wasn't desirable.

It's hurtful how my close friends and family don't understand and don't support me. I have the same health problems as people who are fifteen to twenty years older than me and mine tend to be not as mild as theirs. I'm just feeling alone here. I think that's why I sometimes feel closer to my online friends than I do the ones I hang out with. They get it. They understand. I wonder if I'd do better starting a chronic group at church.

Sorry about the whine. It seems like all I do here anymore.

Sleepless

It was 3:55 am when I woke up. Not the glance around groggily kind of wake up, the fully aware I'm awake kind of awake. It has been happening increasingly lately. I'm not sure what is behind it. If it is the recent increase in my anti-depressant medication, you'd think that I'd have trouble falling to sleep, not staying asleep. I wonder if it is a sign that the pressure of my CPAP has become too strong. When I wake up I am often struggling with it. I am not gasping for air, but feeling like I'm bloated and have pressure on my lungs, like gas.  I think I'm going to call my sleep cardiologist and ask him about it. But for now, I'm wide awake too early in the morning and feeling tired. And worst of all, it is totally dark outside. I can't wait until I am waking in sunlight again.

See Lord, I never knew that.

I am watching a documentary on Marvin Gay. It explains his relationship with his father.Wow! I loved his music, but didn't know that he died at the hands of his father. There is so much evil that passes beyond my comprehension, I wonder if I am developmentally delayed in this area. I just don't expect evil, and I am always shocked when it happens.

Thrifting

Mollie (by the way, Lizzie changed her name to use her first name years ago. I'm just slow to catch on) and I spent the weekend thrifting. The nice thing about living in a large metropolitan area is that there are many thrift stores available and quite a few of them are near wealthy neighborhoods. I'm not saying that we don't shop at the Goodwill store in Woodstock, but there is a difference in quality. In Woodstock you get things that could have been purchased in Walmart or Target. Many things were probably purchased at Ross or Marshall's. I've found a few nice Liz Claiborne items and things from Coldwater Creek. Perfectly good clothes, but the same as I can reasonably afford to purchase new. The stores in Johns Creek and Buckhead tend to have more upscale clothing. Mollie scored three pairs of American Eagle jeans, and I found some slacks from Jones New York and Anne Taylor. See the difference? I am grateful that I can get clothes like these and at the same time support a worthy cause.

The loggia at work is very breezy and cold in the winter we call it little Siberia. I can tell employees who have lived up north, because they know how to dress for it. They will have on a full length coat, leather boots and gloves and be wearing a wool hat and scarf. We dumb southerners don't get long enough or cold enough of a winter to think about proper outerwear. So on those mornings when the temperature dips, I am unprepared for it. I have looked at the northerners with envy many a morning when the temperature is below freezing, thinking that I should buy myself a long coat. Every time I go to price one I am rebuffed by the cost. I don't think I've ever owned a $200 coat, and that seems like the starting price. So I was thrilled when I saw several hanging along the back wall of the store in Alpharetta. They had one in my size, and I love the style of it. It still had the price tag on it, $275, and Goodwill had it for $8.98. For less than $10 I got a brand new winter coat. I think this is the best  Thrift shopping spree that I've been on. Oh, and I found a new store that has a good selection of gently used furniture. I would really like to replace my couch. I'll be back there soon.

Many Subjects

I have a couple of subjects that I've been thinking about. Usually when this happens I put a title on a post and save it as a draft as a place holder. Then I forget about the place holder and I get a folder full of drafts. I've decided to try something a little different here. I am going to put both subjects in one post and separate them by a  page break. Maybe that will work better. So here goes...

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Name Changes

I've been considering a few name changes. I've actually been thinking about it for a long time. The one that you would see would be here on The Pink Tee Shirt is actually two name changes.

When I started blogging in 1998 My blog was named emiliasdance, and it was housed at Opendiary. That was back in the dark ages of social media when everyone was supposed to be anonymous and come up with pseudonyms. My pseudonym was and still is emmy. It was also before I became a professional patient. It wasn't an e-patient blog at all. The main reason to write the blog and the main subject was the very messy and hurtful divorce that I was going through. I was very angry, and understandably in a major depressive state. I couldn't express my anger around my children and withholding it was adding to the depression. I have always dealt with my depression by keeping a journal, so I was excited that I could do it anonymously in a place where even if my children were bloggers on that same site (and they weren't) it was highly unlikely that they would rat out my blog. They never did find it.

I continued writing that blog, but the subject changed dramatically over the seven years that I blogged there. After my divorce, it became about losing my home and then about my son joining the Army and participating in the invasion of Iraq.

Two years after starting the blog I was diagnosed with Long QT Syndrome, and those were some of my first e-patient posts. At the time I hadn't discovered medical blogs. It never occurred to me that doctors and nurses would ever take the time to blog. I always thought that they were way too busy to waste time like that. It equally didn't occur to me that a vast number of other patients were  also  using online journals to express their experiences, or that those blogs could be empowering to other patients with the same conditions. I just needed a space to record what was happening with me.

In 2004 I was diagnosed with my second chronic and life threatening condition. Just two months after my son came home from Iraq the first time I was diagnosed with stage 3 Breast Cancer. Unlike my experience with LQTS my posts became almost exclusively about Breast Cancer. With 8 months of treatment, there just is a lot more to write about than with the 2 appointments that I had with LQTS.  With that I think I actually did become an e-patient.

In  the almost 8 years since my diagnosis with cancer I have added 16 more separate diagnoses to my list. Most of them are just pains, like Lymphedema and Reynauds. Some of them like Metabolic Syndrome and Pernicious Anemia are OH SH!7! diagnoses. And now I write about a host of of conditions. For that reason I am thinking about changing decided to change the name of this blog from The Pink Tee Shirt to Life is a Many Zebrad Thing. I don't really want to change the url, because my family uses it and I want my followers, all 11 of them, to be able to find me. So the second part of the title will say Formerly The Pink Tee Shirt to try to ward off confusion.

As part of this name change, I want to come out of the closet and use my own name. I originally chose emiliasdance and the nick name emmy because of the need for anonymity. When I was a child my imaginary friends were fairies named Emilia, Adrianna and Chloe (yes, I was a strange child). I don't know where a 4 year old would come up with names like that. It is possible that they were suggested by one of my older sisters or even my grandmother. She named my mother Miriam Jeaninne. I named my children Tim, Matt and Mollie. But in my 4 year old imaginary world Emilia was the spokesperson for the group so I became emmy on my blogs. The thing is now most bloggers do so by their real name. And it does seem like a cowardice to hide behind a pseudonym. I dislike how people hide behind anonymous to leave nasty comments on other people's blogs. It is time to own up to my own name. From now on, I will just be Lisa, which is my birth name. It is less recognizable when leaving a comment because half the female population seems to be named Lisa. But it is what it is.

The other name change that I am considering is my last name. When I divorced in 2001 (yes, it took me three years to finally get divorced. It was a really messy divorce) I wanted to change my name back to my maiden name. I had always regretted having taken my ex-husband's name. It felt like I gave up my identity. My maiden name is an ancient name. I can trace it back to the 1100's. My father was a direct descendant back into the dark ages. My ancestors were written about by Shakespeare. And I had given that up. Also, I got the feeling that my dad was hurt when I kept my middle name and didn't adopt his name as my middle name. When I divorced I didn't change it back because I had a young daughter and my sons were already angry about being rejected by their father. I didn't want them to see it as me rejecting them also. Then when I was told that I had cancer my biggest anger was that I was going to die with the name of the man who rejected and betrayed me. The effort to change my name at that time with all the challenges that I was facing health wise seemed overwhelming so I just kept my married name. Now I'm ready to just be me. I want my name back. I'm getting a big hefty tax refund back from both the state and federal government this year thanks to my daughter's educational endeavors, so I think I'm ready to take the plunge. I have been called by my married name for all of my adult life, almost twice as long as I was called by my maiden name, yet it feels so right to be me again. Maybe a rose isn't a rose by any other name.

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 Warning! If you have a strong gag reflex or a weak stomach, stop reading here.  The second post will gross you out.
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The Grunge that Goes Around, Comes Around


To say that work this week has been a challenge is to say the least. An urgent communications crisis and a department meeting in one week should never happen. But that it did saved my rear. The intestinal stomach grunge pukefest has hit the communications department hard this week. It started on Monday when the manager that I gave up animosity toward for lent last year called in sick. This was a first for him. He works 80 to 90 hours a week so as to not have to go home to his family. He hired a mini me who is somewhat more tolerable than he is. She also called in sick as well as six other co-workers. OK, well we are a big department. We can handle it, right? Tuesday another 6 people called in sick, including one of the other chronically ill people in our department. She is totally put in danger of death by this grunge so I was getting upset. On Wednesday an urgent communications crisis hit and we were ground zero for the response team while missing 12 players. Fun times, oh yeah! Lent manager emailed me telling me that he was sicker than he has been in years so he thought he wouldn't be in to MC the department meeting on Thursday. OK, well step-in manager and I could handle it because it is pretty much set up now anyway...except, I needed to go into Lent manager's cube to find the Recognition Awards write-up for the meeting. Yuck!!!! Lent manager is the second most disorganized person in the department (yeah, someone else looks like a paper tornado hit her cube. Whatever happened to the idea of a paperless society? It was a good idea). To find the write-ups I had to touch every one of 50 piles of files and paper on his desk...twice! I was so freaked out that I bathed in Lysol wipes when I got back to my cube. Above I have a picture of my dried out hand to prove it. On Thursday we were in day 2 of urgent communications crisis, but I was having a crisis of my own. Lent manager was still out, step-in manager had become deathly ill and called in as well as two of the scheduled presenters. My back was against the wall, and I didn't have the authority to call the meeting off. However, because of the urgent crisis the department VP called the meeting off. Fortunately it was too late to cancel the catering. I became the hero because I could release the department from an unpopular meeting and invite them all to a casual luncheon instead. We all win, right? Best department meeting we've had in the 12 years I've worked for the company.

Friday morning I woke up feeling a bit bloated. Nothing, right? But as the day progressed I developed increasingly severe diarrhea. Yeah, thanks Lent manager. Looks like I'm going to have to give up animosity towards you again this year. What can other chronic manager and I do for you? I have this problem with leaving my phone and my debit card on my tray in the cafeteria. I can't tell you the amount of debit cards and phones that I've had to replace. Anymore, I don't allow myself to place them on my tray. So they went into my back pocket. Nice and safe I would say. I was in the cafeteria for break when the grunge hit me. I left my tray on the table to go to the nearest bathroom. I unloaded the vilest amount of grunge that you can imagine. That was awful enough, but when I stood up my cell phone and my debit card fell out of my pocket and you have already guessed where they landed. My choices were few. I could replace my phone and card at an economic and pride expense or I can reach in and get them out. Deep heavy sigh! I did the latter. Yuck!!!! Oh Gross!!! But did I really have a choice to flush my phone? My debit card? Hey, I gave myself a shot on Wednesday. I'm a tough cookie. Don't believe for a moment that I wasn't grossed out. I took them both to the sink that has warm water and washed both of them with soap. Then, my ex with his glorious penchant for mistiming decided to call...no, there was no way I was going to put that phone near my face. I texted him that I was in a meeting and I would call him back later. Good thing little white lies don't send you to hell, right? Back in my cube I scrubbed both the phone and the card with Lysol wipes and left the battery out of the phone until everything dried out. I still haven't made any calls with that phone. I think it's going to take a few days. However, I was very conscious of the moment when I handed my debit card to the grocery clerk. Shoot, I sure hope I'm not spreading the monster grunge to everyone in Woodstock.

So, anyone want to borrow my cell phone?

Ok, so I did it

I did it tonight. I gave myself my first shot. L in Dr. R's office had showed me how, and that was backed up by the pharmacist and Dr. B. I'd watched Youtube videos of it. And overall I really wasn't nervous or stressed out about it at all. Setting up and prepping seemed weird and I even video taped it. Still though it seemed weird and surreal it just wasn't that big of a deal. The only moment of hesitancy I had was when it came to the actual dart action to give myself the injection, but that was easily overcome. When the needle actually went into my skin I was relieved that I could do it. After that it was a piece of cake. Best part, nothing about it hurt. The needle is so thin I can't feel it and the liquid itself isn't thick so it doesn't hurt going in. The shot that L gave me last week made me slightly sore for one day, but I'm not getting sore this time. I think I'm going to be able to handle this. It makes me feel like not so much of a wimp. Seriously, I knew an 11 year old kid who gave herself insulin injections. I can do this. I can do this myself.  I video taped it and will put it up soon. It's late, good night

Dr. B's last night

I had an appointment with Dr. B last night. She was her normal encouraging self, but I just wasn't feeling it. It has gotten so much harder to lose weight. I have to keep reminding myself that that isn't the goal. My goal when I started seeing her was to lower my A1c, ldl and triglycerides and to raise my hdl. I have done all that. I should be happy, right? Well, I think my goal was a little too superficial. Getting those numbers in line is great but what I was really hoping for, and I have not received is better health. My blood sugars still bounce around all over the place. My blood pressure is erratic. And I've had to raise every one of the medications that I was hoping to either lower or go off completely. I knew that weight loss isn't the cure that it is sold to be, I know it. So why am I so disappointed? I think it's because the whole medical industry right now is selling it. When I got home I watched "Biggest Loser" on TV. The way I was feeling it was good that I wasn't chowing down on a super sized burger and fries while I was watching it. In the middle of the episode they were talking about one of the contestants CPAP and Bob said "I'd like to get her completely off of it", and I thought "wow, he really doesn't get it." In December when I went to see Dr. L, he told me that obstructive sleep apnea isn't a disease caused by obesity, but it is greatly complicated by obesity. In other words, the CPAP is my friend for life. I wonder how many of those contestants who walk onto the ranch carrying a CPAP machine still need one when they leave? They never talk about that. And the doctors that I see who openly proclaim that weight loss is the cure for everything, I wonder how many patients they have that have lost a significant amount of weight and still need all the medicines. Why isn't that telling them that maybe it doesn't work that way?

Oh well, next time someone uses that line of reasoning on me I can at least honestly tell them that that my blood work is probably better than theirs.

Dr. B's tonight

Sorry, I deleted this post. I just didn't like it.

Elvis, Anna Nichole, Heath and Whitney

Let me say this as a disclaimer at the beginning of this post, so if you are sensitive to this sort of speculation you just say "woman is a fool." and move on. The truth is that at this point nobody knows why Whitney Houston died this past weekend. Still, I'm going to step out on a limb here.

I was very shocked and saddened to hear about Whitney's death. I hope that there is a strong circle of family who are upholding Bobbie Christine. I have not ceased to pray for her since I heard of her mother's death.

There are women who are unrelated to me that I refer to as sisters. They are fellow Christians whom I love. I know that we share a sisterhood through our adoption into the Body of Christ. They are too numerous to mention here. But at the same time I am very shy about calling African American women sister. Not that I don't love some of them as much or not as related to them as closely in Christ as the women on my sister list. But the term among them seems to hold a deeper meaning. I respect that bond and as a GRITS and a WASP I would never assume to intrude on that sisterhood. Our experiences often overlap and often clash. It's a sad fact. Their reality tends to be much harder in many areas than what I experience. I understand that in many places my friends Ruth and Lucille receive less compassion and harsher treatment than I do even now. All too often I am embarrassed when I hear about the treatment they receive. At the same time I understand that we are often  the same. We want the same things. We value the same things. We believe the same things. Our basic difference is the color of our skin...and sadly that is a huge difference. I hope that perception will die in another generation or two. Why should the color of someone's skin be more significant than the color of someone's hair?

But that is off the subject of this post. I feel glad that in the broad term of sisterhood in Christ I can say that I am comforted that Whitney was a fellow Christian sister and I know that she is singing in a Heavenly choir, and I am sure that she is wowing them. I mean, that voice was never meant to be confined to this world anyway. Still her death is touching me in more ways than this. Elvis died of a combination of prescription medications, not an overdose of any one prescription. Anna Nicole died of a combination of prescription medications, not an overdose of any one prescription. Heath died of a combination of prescription medications, not an overdose of any one prescription medication. I am stepping out on a limb and thinking that Whitney died of the same. I heard today that family who talked to her 30 minutes prior to her death had no red flags to be concerned about.

This is how it happens, you are an addict so your doctor prescribes Methadone to counteract the effects of going cold turkey off of narcotics. You are an addict because you are chronically depressed so your psychiatrist prescribes an anti-depressant, say Paxil. So you have a sore throat and you go to your primary care doctor prescribes Z-pack and Sudaphed,. Now you are taking four medications that prolong the QT interval. If you prolong this interval enough at the right time it will cause a condition known as Torsades de Pointes or The Turning of Points. If that doesn't correct itself within a few seconds the patient will go into Ventricular Fibrillation and the patient will die within minutes without intervention by cardioversion by electrical shock. That describes the predisposing sequence that often leads to death by acquired Long QT Syndrome.

I know that she could have slipped. Even Christians feel pain they think they have to mask. I know that she could have died of a mix of medication. But the truth is that after the life of pain that she lived, I am comforted to know that she is home. Sad that it is way too soon, but still one more sister is home.

Still, I am so sad that she is gone.

Tell you what, we'll have dinner together in the Kingdom

Sadly this is another rant. I love my church, they are a truly loving and caring bunch of people. They can show up and be the hands and feet of Christ and never even realize that they did it.  But so much of church life that happens outside of the sanctuary centers around food. Trouble is, that most of it I can't eat and it gets to be a struggle for me. Since November of 2010 I have been on a diet that severely restricts carbohydrates. Carbohydrates incite the release of insulin and my body has quit responding to insulin. So my pancreas pours out excessive insulin to compensate. But instead of the insulin being used by the cells of my body, it stays in my blood and damages my heart. It's known as type 2 diabetes and hyperinsulinemia. As part of this process, it causes my liver to produce too much triglycerides. It raises my LDL levels and lowers my HDL. In other words, metabolic syndrome, and metabolic syndrome doesn't play well with LQTS or hyperaldosteronism. I can't change LQTS. I probably can't make too much of a dent in hyperaldosteronism. I certainly can't undo the damage that chemotherapy or radiation to my left chest did to my heart. But I can control metabolic syndrome through diet and exercise. And the diet that has been phenomenal in controlling it is somewhere in between Adkins and South Beach. Seriously, if you saw the latest blood work that I had done, except for the RBC and B12 levels, you would have thought you were looking at the blood work of a 20 year old athlete. Not bad for a fat old lady.

Two weeks ago at home group we were having a pot luck dinner. I didn't leave it to chance that there would be anything that I could eat. I knew that there probably wouldn't be. So I brought a salad and dressing and some drinks. I also brought a 4oz of chicken to put on the salad that I was having and made sure that I got a diet drink. As I sat down at the table with my salad dinner, N said "You're still on that diet!" like she was disgusted. I told her yes, and I would be for life. She was incredulous. She doesn't get it. Eating a plate full of carbohydrates isn't an option for me. I sat there thinking how unfair the criticism was. I mean, I didn't look at the plate full of cake and cookies that she brought to the table and say "My God! You are putting that in your temple after eating a plate loaded with scalloped potatoes and mac and cheese?" I truly think that if you decide to be offended by something you surely will be.

So tomorrow night is home group again. The fare is pot luck again. But this time someone is bringing pulled pork and someone else is bringing salad. It doesn't matter what I bring I will be able to eat. I was getting happy. I was planning on making a cheese cake made with Truvia and a broccoli cheese casserole made with ground cauliflower instead of rice. Believe me there is no taste or texture difference with the changes. But then tonight I got the message. "S decided that we would meet at Gondolier's instead of the church. And the time has been changed from 6:00 to 5:30 to miss the rush." Grrrr! Gondolier's is an Italian restaurant and there isn't one thing on their menu that I either can or will eat. All of their salads are based on feta cheese, which I hate with a passion and everything else has pasta in it, or is breaded and fried, or is pizza or wrapped in pizza dough. Not one thing I will eat. Someone must have reminded S that I don't eat at Gondolier's. S decided that instead, we will go to Los Bravos. Ummm Hmmm. So we will exchange pizza dough and pasta for rice and tortillas.

I'm really not that difficult. I ate last night at O'Charley's with my brother and had a nice steak covered with blue cheese and mushrooms and vegetables and at lunch today I went to Long Horn's with my friends and had close to the same. I can eat chicken salad at Steak and Shake or Chic-fil-a or eggs and tomatoes at Waffle House. I can eat pork chops at IHOP. I can even find things at the Chinese Buffet that I can eat...but Italian and Mexican poses serious problems for me. S is addicted to carbs. It is apparent. So after telling the group that I wouldn't be joining them because I probably couldn't find anything there that I could eat without spending a fortune, I got this message..."You are still on that diet! When will they let you off it?" I tried to find a nice way to email them back to tell them that the health problems that I have that demand this diet are chronic, they can't be cured. I will be on this diet until I go Home. So if I have to sit one out here on earth, I'll catch you for dinner in the Kingdom.

Goodbye Kodachrome

"When I think back

On all the crap I learned in high school

It's a wonder I can think at all

And though my lack of education

Hasn't hurt me none

I can read the writing on the wall

Kodachrome

They give us those nice bright colors

They give us the greens of summers

Makes you think all the world's

a sunny day

I got a Nikon camera

I love to take a photograph

So mama don't take my Kodachrome away"

 Paul Simon - Kodachrome

Wow, Eastman Kodak is going to stop selling cameras. I'm heart broken. My whole childhood seems to have swirled around that company. My uncle (he was really only my father's best friend, but I didn't know that until I was in high school) must have filmed every moment possible of our lives on reel to reel tape. Pictures were taken at every family gathering. Our entire family was chronicled growing up lined up on my grandparent front porch steps.  My prize possession as a 12 year old was the Instamatic camera that I was given at Christmas, as my brother with a similar camera sent us pictures from Ben Hoa Air Base. Five years of high school Graphic Arts classes spent in the dark room developing film and pictures (high school where I lived started in 8th grade). Summer camp and car washes and bake sales all duly photographed. Pictures of the beach at college and friends, of my wedding, of my parents and friends and family. Pictures of my children as they grew up. Pictures of my dog, Sammy. And now it will soon be all gone. Future generations will have to find another way to commemorate the lives they led. I wonder if Youtube will be as lasting as the scrapbook that Granny put together. I shudder to think. Now Kodak is taking my Kodachrome away? Goodbye Kodachorome, it's been a hell of a ride. Say it ain't so Kodak, say it ain't so.

What's it like?

The day started out cool, but the temperature rose throughout the afternoon. We had run laps in gym class and then I went to class woefully overdressed for the weather. As I sat down  in the desk the three minute warning bell sounded.

A friend saw another friend and me deep in conversation in the grocery store parking lot, she thought it would be funny to drive up behind us and blow her horn to get our attention.

The guy from the mail room saw me in my cube, intensely studying and errant database for a missing formula. He dropped a fifty pound box behind my chair to see if I'd jump.

I stopped at the top of the ramp to yeild to oncoming traffic. The woman in the car behind me didn't see me stop and hit the back of my car hard. I began shaking violently. Talking with the police at the scene I was still shaking for the adrenalin.

I was in the parking lot walking to the store. Suddenly the car beside me blared it's horn as it's owner unlocked the door with a key bob.

Church is quite, all but the preacher's voice. The woman beside me forgot to turn off her cell phone. It suddenly began to blare a popular song.

I woke up that morning feeling ill.  My head was pounding and I was sure I was getting a migraine, but I went to work anyway. The traffic light Turned green and instantly the car behind me blew his horn in impatience. As I drove along the winding road the sun was blinking behind the trees and I become disoriented.

All of these are descriptions of the times when a startle has caused me to faint. They are the everyday hazards of living with long QT syndrome. My most frequent triggers for torsades de pointes tend to be heat, illness and startle. I can control some things. I turn my phone off when I'm sleeping and have an alarm clock that wakes me up slowly. I avoid medications and try to stay hydrated when I'm going to be hot or sick. I take my medications. But still, there are just so many situations that I have no control of.

LQTS is invisible. It is only diagnosed with ECG testing and genetic testing.  Even after someone dies of it there are no observable characteristics. My friends didn't know not to startle me until after the fact. The person locking their car or blowing their horn can't tell that it could scare me to death...literally. These are just everyday things that people do. But they can be very bad for me.

My friend asked me how I deal with it. Really, I don't walk through life thinking about it. I don't even think about it when I'm lying down to go to sleep. For the most part I just accept it and move on. But when I've been startled and my heart is beating wildly and my head is spinning, it gets scary.

Long QT syndrome is a genetic condition characterized by a prolonged resting phase of the heart. This lengthy resting phase predisposes the individual to ventricular tachyarrhythmias, which can be manifested by syncope (fainting) and sudden cardiac death.

Pernicious Anemia

I saw Dr. R today. It's official. I do have a vitamin b12 deficiency (pernicious anemia). I started on b12 shots, and will be self administering them from now on. I'm really glad for that because I wasn't looking forward to monthly doctor appointments. As far as having another thing on an already too long list of diseases, well I'm not so happy about that. But this will be ok I think. Pretty easy to take care of. I say that now, but I will let you know when I have to give myself that first shot....

Pink Ribbons vs Red Dresses

Many health charities are jealous of what they call 'Pinkwashing". You can find evidences in recent Wear Red Day comments from cardiologist like DrWes and DrJohnM even though DrJohnM is quick to point out that addressing both diseases is important, and he is quite right. It has been my experience that many of the women who are active breast care advocates are also heart health advocates. The reason is simple. Adriamycin, which is used as a first line treatment for breast cancer is also a cardiac toxin and can cause cardiomyopathy during treatment and many years afterward. We must potentially sacrifice our heart health to keep ourselves alive. Thus promoting healthy lifestyle and finding more awareness for women's heart disease among the medical community is vitally important to us. We who wear pink tee shirts also wear little red dresses. For this reason I find bizarre the kind of tit for tat relationship that has developed between Komen for the Cure and  The American Heart Association.

In October, 1985 the National Breast Cancer Awareness Month was founded by a partnership of the American Cancer Society and Imperial Chemical Industries (now part of AstraZenica) The focus of the partnership was to promote mammograms as the most effective weapon in the fight against breast cancer. In the years that have followed, the month has been consumed with awareness walks and fundraisers and corporate sponsorships. There is almost no one on earth who doesn't know the pink ribbon will be tying up the month.  In 2008 congress designated October as Sudden Cardiac Arrest Month. I haven't been able to find any defining reason why October was chosen when at the time the pink tide was already more than well established. February would have made a appropriate choice as Sudden Cardiac Arrest Awareness could more easily  piggy back on February being American Heart Month as set aside by congress on December 30, 1963. But really, prior to recent years did anyone even know that February was American Heart Month? Now that I think about it, until 2008 when UPS celebrated  Wear Red Day, if I'd heard about it at all it sparked the same response as "today is national hot dog day" Oscar Meyer might get excited about it and give out hot dogs from the Wieniemobile, but that's all. I don't think I've ever seen the men, who American Heart Month was established to serve do one thing in an effort to gain any awareness for the cause. So it's not surprising that the Heart Rhythm Society and Congress might not be so excited about February. That changed in 2008 when the women got involved and the Red Dress campaign started making noise. Suddenly, Heart Health month is all the fashion, and as you can see especially in DrWes's blog, the men are jealous.

Click here to see the campaign

Not only the men are jealous, but now it appears that the Pink Tide is looking to get even for Sudden Cardiac Awareness Month's recent positive campaign that took away some of the October steam. I think the timing of the Komen announcement to withdraw funding from Planned Parenthood breast screening programs and reversal on Wear Red Day was if nothing else, suspect. For those of us who have feet in both causes the argument is an embarrassment. I must give Nancy Brinkler this much of a nod though, This little spat has drawn much more attention to Wear Red Day than anything the Red Dress has done for itself. Thanks Nancy.

What Dreams May Come

This post is about a disturbing dream I had last night. If listening to other people's dreams makes you as crazy as it does me, please go on to the next blog.

Most of my childhood was spent in the Brookhaven area of Atlanta. In the 1960 and 1970 eras children were allowed a fairly large area in which to roam with the understanding that they would have someone (another child) with them and that everybody was expected to be model citizens. I wish I could say that I deserved the large amount of trust that my parent placed in me, but like most children I did not. The public library was a two mile walk from my home, and one of my very good friends lived down the street from it. After I finished my chores, I would tell my mother that I was going over to Barbara's and Barbara would tell her mother that we were going to the library and then to the mall just in case her mother decided to check the library. Her mother couldn't drive and was highly unlikely to walk the mile and a half to the mall. We would have the whole afternoon to wander around Brookhaven and Buckhead. As a result there wasn't a nook or cranny between Dresden Drive and Weiuca Road that we hadn't explored. Our most visited place by far was an old house on Roxboro Road  Road and hidden behind the railroad tracts that run behind Cherokee Plaza. It was the first house built in Dekalb County Georgia after the burning of Atlanta. It had a historical marker that told us so. Apparently the Dekalb Historical Society at some point had plans to restore the house, but that never happened. It became a hangout for errant teens, and even we kept the presence of it a close secret in case the word should get out to the wrong people. Inside the front room of the house was an architect's scale mock-up of what the house would look like when the restoration was complete along with drawings on the wall. We did not disturb them so no one could find out that we were "borrowing" the house. My dream took place around this house. The other female in my dream started out being Barbara, but would change intermittently to be De or my room mate from college, Shelly, or my current friend Beverly. All of these women have dark brown hair and hazel brown eyes, so the change was so subtle that I didn't notice it while I was dreaming, but only realized it when I was thinking about the dream later. Since they switched so often and it has been hours since I woke up I will call the other woman in the dream Eve.

The dream opened with Eve and me rushing through the woods along the rail road tracts that lead to the house. We were in a hurry because we were convinced that the historical house was about to be razed, and we wanted to save the mock-up and the drawings. We thought that they were important historical objects and should be protected. As we were hurrying along we were discussing what we were going to get out of the house and whether we could get the historic marker out off the porch. We didn't have a screw driver with us. Our plan was to take the mock-up to the library for safe keeping. When we got to the house, no one was around so we were able to run in and quickly snatch the drawings and mock-up. But as we were grabbing these objects a train was passing the house and we had to wait for the train to go by before we could escape. As we watched, we saw a bunch of soldiers/police jump off the train and run into the woods. We were afraid to try to return along the railroad tracks so we opted instead to cross the tracts and take Peachtree Road to North Druid Hills Road where the library is located. When we got to the library, we found that waiting for the train to pass and our fear of the soldier/police in the woods had cost us too much time and the library was closed. We opted instead to take the objects back to Eve's house and place them in the closet in her brother's bedroom. He was living in New York with their father so no one would be in the room for a while. And we could take the objects to the library the following morning. When we got to the bedroom we realized that there was no room in the closet and decided to place the objects between the bed and the wall where they couldn't be seen from the door. We then started to change our clothes so we wouldn't be recognizable if someone had seen us running down Peachtree Rd. I had just stripped down to my underwear when there was a sharp knock at the door. There was a man on the other side demanding that we unlock the door. I grabbed a pillow and a blanket from the bed and leaped to cover the items and myself as Eve answered the door. Before Eve could say anything the man at the door said "Someone, and I should say someone in this room" as he walked to the area by the wall where I was. "Has taken something that doesn't belong to her." He kneeled down and began searching for the items around my sides. "You know then, I'm not dresssed" I warned him. He said "I can see that" and shifted his position. When he did this I used the opportunity to flip over to look him in the eye. But during the maneuver the pillow slipped revealing the items. The man looked me in the eye and said "The Father has been notified by the authorities and is calling you home."  I then became Eve, and I was standing on the banks of a sapphire colored river watching emmy sail off in a giant emerald colored swan boat with the man who had found us in the room. Eve said "So this is emmy going home?". The man assured her that I was indeed going home. Eve said "What a beautiful boat to make the journey in."

The alarm clock went off, though I am sure that I had not set the clock. I woke up from the dream with it still fresh in my mind. I laid there for an hour thinking about where the dream had come from and what it could mean. Me ending the dream being the De Eve was obvious. It has to do with De having to deal with cancer again. The location of the dream was also obvious to me. With Lizzie working at Cherokee Plaza I have been in the neighborhood often lately, and I had a conversation with a friend at the lunch table about the house recently. Barbara lives in her family home as she inherited it when her mother died, and I have been Facebooking her recently about getting together again. The soldiers/police cutting off our escape route isn't much of a shock because we were always concerned about the police finding us on the property. The meaning of the dream surprises me. Recently I have been commenting with Solitary Diner at Table for One about her role in palliative care. I told her that having had multiple potentially fatal conditions, I was just used to the idea that I would die. I do not doubt my mortality. But what the dream was saying to me in a wonderful way is that I do to the depths of my consciousness believe that I will be called "home" by the Father, and I believe that the journey will be beautiful. I also believe that while I'm here on earth I will remain surrounded by my friends. All in all it was a great dream.

Missed deadlines

I thought that it would be a good idea on behalf of Heart Health month to write a post every day detailing my interest in the month or some fabulous newsey article about heart health. Yesterday was Go Red for Women day and I did participate. I wore my little red dress and sassy pumps to work. I took an hour out to hand out red dress pins and heart healthy red bags of snacks. I attended the Healthy Heart Lunch and Learn where I bit my tongue to not tell the cardiologist that the overall risk of death for a human is 100%, nothing will change that.  But on my goal of writing every day I have already failed miserably, and it is only the beginning of the month.

The distractions started with learning of Bob's cancer. He has finished his first round of chemotherapy and still thinks he feels fine. I will ask him in a month if he can still remember specific things and see if his assessment  is as good as mine was. At the time I thought I was doing well. The truth was that I was clinging to the edge and now I don't even remember the first three days. I remember the chemo nurses introducing themselves and then I remember waking up three days later in a different location. Everyone tells me that I was awake and communicating but I don't remember it. I wonder what if anything Bob will remember.

Then my diagnosis of pernicious anemia happened. It's not that big of a deal. Take a shot that I can give myself once a month and I am fine. But I am not fine, I am frustrated because I have a 3 page blood work report that I worked damn hard to get perfect. Then I get hit with this, an autoimmune disease that I can't control screwing up the perfect report that I set as my goal. The sad truth is that it isn't only missing the goal that burns. It's the fact that now I have to add another medicine and another diagnosis to the long lists that already exist. I hate showing that paper to anyone as it is. It's embarrassing because it makes me look like a hopeless hypochondriac. Only those diagnosis's are ones that I have actually heard from a doctor and I'm being treated for. Still, there is just too much on that list and I don't cherish the idea of adding even one more thing.

Another problem is looking for something exciting to say about heart health. I'm not getting very excited about the topics I have available. I doubt that I could find 28 new and exciting things to say about Long QT Syndrome or Left Ventricular Hypertrophy. I can't tell if Hypertension is a cardiovascular disease or a kidney disease, and believe me I have no new twists on it. The only way to treat it is to lose weight, exercise, watch your diet and take your pills. It's that straight forward. Everyone knows it, most people don't do it and the ones who do aren't perfect at it. I must say that the lifestyle changes only sometimes control my hypertension or blood glucose. A slight infection or stressful week at work can send both soaring. Or one or both can suddenly become unstable for reasons that I can't pinpoint. It's baffling and frustrating, but it is what it is. I can see why some  people just give up on it and live like they want to live, as much as that idea just panics me. My entire childhood was spent watching my father's slow slide into heart and kidney disease. He died of sudden cardiac arrest as a result of Long QT Syndrome when I was 25.

So here is the Heart Health Laundry List:

1. Watch your weight
2. Watch what you eat
3. Exercise daily: 
4. Take your pills
5. See your doctor

That's it. I can't add to it. So I won't be writing 28 posts on heart health this month, but maybe I can find 28 heart health blog posts that I can link to. I am considering the one above as post #1, and I have 3 more to catch up on.

1. http://www.youtube.com/watch?v=aUaInS6HIGo This is a really entertaining Youtube video and worth watching despite the fact that the doctor claims that exercise cures death a few times.
2. http://www.everydayhealth.com/blogs/living-with-heart-disease/heart-diseasethe-emotional-tolls-it-takes A discussion of the emotional fall out of living with heart disease from someone who's lived it. It tells of some surprising warning signs of heart problems in women.
3. http://blog.drsinatra.com/blog/heart-health-nutrition/heart-healthy-snacks Healthy snack suggestions for Super Bowl Sunday, though I've been told by jocks that if you do this you will be hated.
4. And today's link... http://www.gradydoctor.com/2012/02/spirits-and-groundhog-day.html An Atlanta doctor wrote a post about her struggles dealing with caring for men suffering from the effects of alcohol on the heart.

Thanks for stopping by. Hope you enjoy the links.

And yet another

I went to Dr. B's yesterday and saw J. Once again my blood work was spot on....except.... The good news is that my insulin levels have now dropped to 5.1. Yay! The bad news, I've developed a pretty severe vitamin B12 deficiency that is causing a low red blood count. Not so good. I have an appointment with Dr. R next Wednesday to talk to him about it. From what I read, I will now have to take vitamin B12 for life. Insert the big F word here, and this time I'm not talking about FedEx.