Jack and the very bad, rotten, no good day

What Paramedics do when they aren't saving you.

I headed to Alabama yesterday morning to celebrate my birthday with Tim, Jenn and Jack. I arrived just before lunch and Jack and I were playing legos. Jack started talking to me about hemophilia. He was showing me all his bruises. Because we were sitting on the floor, I didn't have a clue that there was a reason he wanted to talk about it. After a while Jenn told Jack to pick up his toys because it was time for lunch. Jack started crying and walking stiffed legged picking them up. We asked Jack if his knee hurt, and he said no, but continued to walk stiff legged. We sat down to eat and Jack began being difficult about eating, but soon ate well. After lunch Jack continued the same stiff legged walk but would tell us that his knee didn't hurt. He didn't sleep at all during nap time and after he was allowed up he had the same strange gait. I mentioned it and asked him if his leg hurt and he said no, his foot hurt. Sure enough he had a hematoma. He became hysterical at the idea of going into the hospital for factor, but gradually accepted that he needed to. We took him to a small community hospital where they knew him and he knew them by first names. He screamed through the entire infusion of factor, but afterward they told us that they only gave him 160 mgs, which is the bottom of the dose range. Jenn wasn't happy with it. You can not overdose factor VIII. After the hospital Jack reverted to refusing to put weight on the foot. He spent the afternoon and evening crawling or walking on his knees. After his bath and bedtime prayers, stories and kisses he slept for maybe an a couple of hours, but just as everyone was going to bed he started crying again. This time he agreed that he needed to get some more factor and didn't get hysterical about going to the hospital. So at eleven o'clock we trekked the 5 miles back to the hospital. This time he was happy until the time of the actual IV. It was sad to watch his demeanor  and the expression on his face change. He did scream while the IV was placed, but was pretty calm during the infusion. This time Tim and Jenn insisted on the full dose and the doctor who admitted upfront that they knew far more about hemophilia than she did let them call the shots. Jack got the full dose. On the way home  Jack asked if I got shots. I told him yes, I get shots sometime and that I get IV's and I don't like them. I told him about Elliot at my doctor's office who can do an almost painless IV, and how I always ask for him. He seemed relieved that he wasn't the only person. He had talked with me during the day about the CT scan machine. I asked him if he thought it was funny when they told him to breathe or not breathe. He smiled at that. That he wasn't alone, and that I understand. He told me that when he grows up he is going to give people IV's. He told me that he was going to be really good at it. This is the age when his daddy decided that he was going to go into a medical field. Tim is really good at pediatric IVs but refuses to give one to Jack. I understand the decision, but it must be hard to watch someone less adapt at it give one to his son.  At home while we loosed the tourniquet and took the taped on gauze cloth off Jack kicked with both feet. I thought he was on his way to feeling better, until a few minutes ago when he was crying out in pain. He hurts, and I'm a little frustrated that they don't have any stronger pain killer in this situation than Tylenol. He took the full dose and can't have any more until the morning. I wish that pediatrics would give up on the idea that children feel pain differently than adults. The idiots who said that never skinned their knees and had Mercurochrome put on it. Kids feel pain and that needs to be addressed. It disturbs me that newborn infants go through painful procedures with nothing more than their mother's finger to squeeze for pain relief. It's criminal. I think that he is in the kind of pain that I was shortly after cancer treatments where pain overtook my whole body and throbbed so badly that I couldn't think about anything other than the pain. Where I was willing to do anything to lessen the pain. Think of having a throbbing abscessed tooth. And it frustrates me that he can't have a tiny amount of codeine mixed in with that Tylenol. This is life with hemophilia. Thankfully a life that few children have to live. It helps that there is a small hospital in this community that has no wait in the emergency room. And that the people who staff it are familiar with Jack and his parents. That there are no fingers wagging that he is covered in bruises. But a kid in pain just sucks.

Now Jack knows that I understand the pain. It's not like his Mimi or even his mommy and daddy don't understand. We all have issues. But I think he needs to know that it's okay to talk about it. To voice opinions and concerns and that other people will know what he is talking about. It is okay to talk about hemophilia. If all the suffering that I have been through has no other point, it is worth it to let Jack know that he is not alone. Other people understand and even fully grown adults dislike the same things he does. It is worth it.

So good morning to you all. I hope that I don't sleep until the late afternoon.

Oh, Bless My Dented Head

Yes, my head does indeed have a dent in it where I hit it when I fainted almost six weeks ago. That faint still has me freaked out. So much so that I have decided not to wait to see if Dr. K comes back to Atlanta. I called a rather promising looking EP and made an appointment. It's in three weeks, so that really isn't too long a wait for a new patient visit. Worst case is that I get a second opinion about he loop recorder and if Dr. K does come back I can always return. If I'm going to get the loop recorder I really should schedule it for this year. I have gone through my out of pocket and wouldn't have to pay for it. It doesn't make sense to wait and risk not being able to schedule the procedure until next year. Now I need to contact L and let her know where to send my records. I hate this process, especially when I'm not really angry with anyone. Just disappointed that it didn't work.

On a different note, today is my 55th birthday. I didn't do anything special today. I had dinner with Tim and Jenn and Jack last Friday and Mollie and Caleb came to church on Sunday and took me to lunch. Clifton called me at lunch time to sing happy birthday. On my Facebook page I got  64 birthday greetings and I allowed myself to have a slice of New York style cheese cake with strawberry topping. Tim and Karen called to tell me happy birthday and Jack told me again that he loves me. All in all, a very nice birthday.

A Place of Warmth

It's freezing in the office again today, so I keep visiting the garden to get warm. The problem is that even though it's August in Georgia, it really isn't all that warm out there. I saw geese flocking last night. Not a good sign for an easy winter. Thinking I really need to retire and become a snow bird. Ha! Like that's likely. I do need to invest in a big brown Snuggie.

So out on the roof in the sunshine and surrounded by a virgin forest I was struck in awe of how big and how overwhelmingly incomprehensible God is. That he made all of this, and I can't even begin to understand the complexities of what I'm even seeing. And even if I was Albert Einstein I couldn't even begin to know it. But to God it's easy. Then He told me to quit slacking and go back in and do my job. Oh well, maybe tomorrow I should bring in a blanket.

Dr. Pop

I had my annual skin check today. Nothing was cut off of my body this time, which I am very happy about. Don't get me wrong, I am glad to be staying in front of any impending case of skin cancer but it is a good day when I leave the dermatologist missing no skin. What I did learn is that I am in fact allergic to the sun. Dr. P's associate had hinted toward that when I saw him in June to remove some precancerous lesions from my face, but he didn't come right out and say it. Since then I have been wearing SPF 50 on all sun exposed skin, except my scalp. Dr. P treated it today with cortisone shots in my scalp and advising me to wear hats when I'm outside. I have never found a hat that I look good in. Maybe if I can find a haberdashery and get properly fitted with a hat I can find something, but I know I won't find one at Walmart or Target. Do they even have haberdasheries any more?

WTF?

I don't know what happened. I found it that way this morning.

Purple

That's the color of my hands these days, purple. They get cold and turn purple with white blotches. It's done it most of my life, but it seems to be getting worse by the year. It doesn't help that the temperature in the office is kept around 60 degrees all year long, but especially in the summer. It is August in the deep south. I shouldn't have to worry about frost bite. My co-workers are actually wearing sweaters and have throw blankets on their laps. At least for now I can take a break in the stair wells or in the garden to thaw out. In the winter I'm going to get a pair of those gloves that are missing fingertips to see if that will help. I wish turning the air conditioner down was part of our "Green Initiative".

Rain, rain, go away.

It is the middle of August and the leaves on the trees are already starting to change. I fear that we will have another hard winter. The rain of the past few days is keeping the weather cooler than normal for this time of year, but it is making me miss a spectacular meteor shower in the nights.

On another note, it's my oldest son's birthday. Happy 33rd Tim.

Where I Work

This the virgin forrest that surrounds UPS headquartes. I think it's beautiful.

August Freeze

Yes, you heard me right. I said August freeze. You see, I started the day with temperatures so mild I didn't mind when my car-pool buddy texted that he needed to be a half hour late. I pulled up Biblegateway on my android and read Psalms for a while and reflected while looking at this:

This is my back yard. It's kind of overgrown, but it's peaceful and the birds were eating and singing. Squirrels were running about gathering the nuts that had fallen to the ground and feasting on my figs, and chattering. Sammy is buried near the trees behind the bush. I miss him. Losing him was hard. I'd had him for 14 years and he was a year old when I got him. He was a dog with character. Pioneer Woman talks a lot about her Bassetts, I understand why. Andrew eventually came to pick me up. I was almost sad when he arrived. For the record, I am allowed this flexibility of schedule because UPS is promoting a Green lifestyle and carpooling is greatly encouraged.

Once at work, I got a message from the Occupational Health nurse that there would be a severe weather drill at 10:15, and panicked because I realized with 16 new hires and the department fire marshall being out of the office, they wouldn't know what to do. So I had to spill the beans and give them a heads-up on where to go. I made sure my supervisor (the fire marshall) knew that I'd handled the situation. It's not often that I blow my horn, but why not? Later I'd learned in a meeting that it took 5 minutes and 12 seconds for everyone in the building to move to safety. While it beat the heck out of the previous record, why would it take that long to move to an area that essentially takes 15 seconds to walk to? Have these people never been in a tornado? I think that it had something to do with the reality that we had sunny skies shining out the windows. In the very near future we will have an emergency evacuation drill. We can usually evacuate everyone of the 2000+ employees from the buildings in under 5 minutes. We are looking to do it in under 3. While I look around and think, concrete and stone don't burn, it is important to understand that this is peoples lives at stake.

So, I was freezing in the cafeteria because the AC takes 36 hours to adjust to the temperatures and the mild morning and day caused the building to be overly cooled. Not long after I returned from lunch in the cafeteria (coldest place in the building), I had to go back down for a Health and Safety Committee meeting (a room off of the cafeteria). While it was interesting, my Reynauds phenomena was having a heyday. Not only were my hands and feet purple, but my whole extremities were involved. I really don't know that my whole body wasn't involved. I went here to thaw out. It was still sunny enough to to benefit from the heat. I was out there for a full 15 minutes and my knees and elbows were still suffering from being blue. Really, I could put my hands on them and feel the cold.  That is bad

The meeting featured a guest speaker who presented a new FDA approved and minimally invasive test for allergies, a huge problem here in Georgia. The conventional wisdom says "If you never before had allergies, move to Georgia and you will develop them." It is just because we have just about every allergen in the country going on here. It is a great state to live in, but if you are looking for a place to move your asthmatic child to, we aren't it. The test is a home test for the top 9 allergies (the ones that 95% of the allergic population is allergic too) are tested with a blood test that requires only a few drops of blood to be drawn and sent postage paid to a lab. I was excited. Best of all, it is under $50 for the test. We may be offering it to our workers. That's exciting for me. I texted my son to take a look at their website. It's http://immunetech.com He suffers terribly from allergies every year. I mean eyes swelling and nose not able to be breathed through. So I was hoping that he'd want to know what was causing it...I know that wheat is one of the causes, but that doesn't normally grow in Atlanta. He was less than enthusiastic.

The afternoon offered thunderstorms. Everyone thought that it was ironic that while the drill was going on we had sunny skies, but storms that could have harbored tornadoes in the afternoon. Andrew and I drove home in rain. We need it and the temperature is very nice. No need for the incessant air conditioning that has become the norm of the south in the summer. Yeay utility bill!

Not a medical day, and I'm grateful for it, but a one filled with things to talk about.

This Makes My Heart Sad

L called today. She had just read the letter that I wrote. She said that she was very disturbed by what she read. She apologized for the confusion and the misdirection. I told her that it was a hard decision for me, that I made it with great sadness. That I hate that I'm having to start over. She said that I could contact her for anything and that she'd keep me informed about Dr. K. I thanked her for that. It was sweet that she called. It made me feel less abandoned, more cared about. Still, I think I made the right decision. I need a doctor who will at least believe in my diagnosis. There has to be a level of trust both ways.

This is harder than a rock. I hate it. My heart is sad.

Please Swallow Your Hate and See What is Really Happening

This is what my son posted on his blog this evening. He is Catholic, I am not. We respect each other's religious bents. The Knights are a wonderful group who do a tremendous amount of good. My own small and humble church has the Care Ministry. It is a food bank for the community and a resource for needy community and church members who just need help. I was a recipient of the Care Ministry in 2004 when I was a single mother diagnosed in advanced stage cancer. They moved me into one of the pastor's home, and took care of each and every need that I had. My son and I each support Compassion International children. Compassion International is an organization that brings millions of children out of poverty and gives them the tools needed to survive, while helping their families in the process. I also regularly contribute to Food for the Poor. It is an organization that feeds children and builds infrastructure to alleviate poverty in our hemisphere. I donate time and money to Komen for the Cure so that under insured women can get needed mammograms. I have donated time and money to Project Open Hand. I have signed up for Hosea Feed the Hungry this Thanksgiving. I can't count the times that my son or I have taken a homeless person inside a restaurant to buy them a meal. When my daughter and I were living in a hotel, I would regularly invite my neighbors in to eat with us. Just because Christians don't stand up and blow horns and announce what we do, doesn't mean that we don't do it. We are instructed by Jesus not to advertise our good deeds, just to quietly do them. My children and I are a small part of the Christian giving that is constantly going on and sustains the needy. We don't have red tape. We don't require that people prove that they are destitute. We just are the hands and feet of Christ. Yes, there are people out there who are gaming the system, but that doesn't matter. They will stand before God, not me. Just don't tell me that we aren't doing our part... you will stand before God, not me.

Homemade

I made the Parmesan Basil Almond Flour bread. I made a mistake and used a cup of Parmesan rather than a half cup. And when the batter was really dry, I added 2 tablespoons of olive oil. And I added a tablespoon of xanthan gum. At $20 a loaf, I was praying over this bread. I was thrilled when there was enough batter for 2 loaves. Still, I cringe when I pay $2 a loaf for bread. This was a leap of faith and a rare treat for me.  I had a happy surprise when I found out that their was enough batter for 2 loaves instead of one. Still $10 a loaf is really on the steep side and this may be a celebratory treat at best. I probably could cut the costs a bit by grinding my own almonds or by buying it online, still it is so expensive.  The recipe called for 45 minutes at 350 degrees. It may have been that I baked in in a toaster oven to reduce the amount of heat that was added to my house. This is after all the south in August. I won't turn on the big oven until October. I had to raise the temperature to 375 degrees for an hour to get the bread to cook. I brewed the tea while I was waiting. I put 6 sprigs of stevia in a pot of water and boiled it, then added a family size tea bag. After the tea had seeped I removed the bag and the sprigs, poured it over ice.  It was wonderful. After the bread was done I cooked the soup and the pork chops. I didn't take a picture of the pork chops because everyone knows what they look like. You can use your imagination. Besides, by the time everything was finished cooking I wasn't that hungry and decided to save the chop until tomorrow. I figured the nuts, eggs and yogurt in the bread were enough protein. I

made the soup with V8 juice instead of tomato juice because I like V8 juice better. It was a wise choice. Also, I don't like tomato soup made with milk instead of water. I just don't like milk, so I decided to leave the half and half for my sisters coffee and tea. She enjoys it, I don't. Another wise choice. So I minced a sweet onion and a hand full of basil leaves, browned them in olive oil, added 32 ounces of V8 juice and brought it to a boil. It was fantastic! Absolutely beat Campbell's hands down. Now I'm ashamed that I ever served my family their soup. Nothing could have been more simple and it only took 10 minutes to prepare. The texture the onions added and the flavor the basil added were such an improvement over the canned variety. It falls in to this is so much worth the effort arena. Two hours later my glucose level was at 91, so I guess I was correct at assuming the protein level was adequate.

As an aside, about a month ago someone broke into my home and only took pots and pans and kitchen utensils even though about $750 in cash was in plain sight in my bedroom. At the time I decided that it was teenagers or homeless people. I really kind of blew it off, except I started locking my doors, hey, I live in the country, okay. I have never had to lock my doors here before. I have lived here for 18 years. So today I was looking for a pair of shoes that Mollie may have borrowed and went into her room, or should I say ex-room? I found this. It is one of the items that was taken in the break in, and the only one I really cared about. I use it to store apples and oranges. I think that Cheryl doesn't keep the doors locked during the day while I am gone and she sleeps a lot. Yes, I know that isn't a good sign, but I will never get her to see a doctor. I do well supplying her with basic living arrangements and food. Getting her to accept new clothes and shoes has been like pulling teeth. I think that who ever took the jar must have been aware that Mollie doesn't live here any more and left it there. More than kind of creepy, but still I am glad to see the jar back. I really don't give a damn about the rest of the cheap pots and pans they took...they didn't take the expensive stuff.

So my day that started in a funk has warped itself into a rare cool summer day that ended with a good meal and my house exuding the smells of homemade meals and basil...and locked doors. The locked doors I'm kind of sad about.

Saturday morning funk

 This is how  my day gets started every day. I have a plastic shoe box full of medications that I take on a regular basis. Today I got the added pleasure of giving myself my vitamin B12 shot as well. I have begun disliking having to do that a great deal. I don't know why. It really isn't that big a deal. It only takes a few minutes, but I have to drag out so many things to prep for it. And then there is a big pile of trash to throw away. So today I woke up to the realization that it is the first Saturday of the month and time for the shot again. Then I swallowed the cap full of pills for the morning. There are more pills in the afternoon and even more in the evening. When the day is done, I will have swallowed 26 pills. Talk about polypharmia. Better living through chemistry I guess. Today just kind of got off into a funk I guess.

The funk may be attributed to the rainy cloudy day we are having. It has cooled the summer heat wave we were having quite a bit. The 74 degree temperature is a welcome change from the 96 degree heat of yesterday. VERY WELCOME. The tree frogs are certainly happy about it. I have opened my windows and I can hear them chirping. There are waves of sound surrounding my house.

The weather is so cool, I have decided it would be okay to turn on the oven for a little bit of baking. I found two lovely recipes that I'm going to try. Tomato Soup with Parmesan Basil Almond Flour Bread that I found over at ASweetLife . I have been enjoying their blog and their website, and now I hope I will enjoy their food as well.  But before I could make these, I had to do a bit of shopping. Living gluten free is not cheap or easy, let me tell you. Nine dollars and change for a two cup package of almond flour...chaa-ching! It's not like almonds grow on trees or anything, right ;0)? Add to that the nearly $5 for the Parmesan cheese and another $5 for the yogurt. This loaf of bread better be good. At least I have the basil growing outside. I think I'm going to add a little xanthan gum to add texture. I'm making the soup with V8 juice instead of tomato because I like it better and the price was the same. I'm going to grill some pork chops to go with this to add protein to the meal, and brew a little stevia tea. A report will be coming on the outcome.

Chick-Fil-A because I'm a Christian and I live in Atlanta

I was hoping after yesterday this issue would be settled. I was hoping the extraordinary turnout would let the country understand that their are shades of gray here. That apparently has not happened. The controversy seems to have gained speed.

If you read this, please read the whole thing. I promise to be as brief as I can be and still explain my position.

For the record, I am not opposed to gay marriage. I would rather see people in happy, committed relationships than shacking up with each other. I would rather give life partners the legal rights afforded married people. After all, the Bible also states that sex outside of marriage is a sin. Why force a second sin on people. And I really have issues with the idea of the government having the right to tell consenting adults who they can have sex with and who they can marry. This falls into the realm of victimless crimes.

That being said, I do not think that Dan Cathey said anything that was wrong, mean spirited or not backed up by scripture. A Christian man, running a faith based business was asked an explosive question. He honestly and humbly gave his opinion without calling names or speaking hatefully. He did not say a host of things that would have swayed me to see what he did as inappropriate. So here is my opinion of the exchange.

1. Mr. Cathey is correct. Scripture clearly calls the gay lifestyle a sin. It also calls many other things a sin , and it clearly tells us that we are all sinners. Sin is sin. Your sin is not worse than mine.
2. Mr. Cathey is also correct in stating that we have no place to tell God that He is wrong. God is the final authority and is always right.
3. Mr. Cathey is correct that the Biblical description of marriage is between a man and a woman.
4. Mr. Cathey is correct in his doctrine. He stated only what scripture says.

What he didn't touch on was that no where in scripture does it say to prevent same sex marriage. It also shows clearly that God is a friend of sinners. Adam placed blame on Eve. Noah was a drunk. Samson was an adulterer. David was a murderer, shall I go on? I went to Bible college. I could expound all day. Like the Bible says, "For all have sinned and come short of the glory of God." Romans 3:23. Homosexuality is no worse than that sin you committed today. Yes, you did and you know it. We all did. There is not a person alive on the planet who isn't living a sinful lifestyle...even the pope. We all sin. And God, how does he view us all? "For God so loved the world that He gave His only begotten son, that whosoever believeth on Him should not parish, but have eternal life." John 3:16. I cannot say it more simply. God loves us and calls us to love each other. We have no sword to swing. We will all stand before God. We should all be treating each other with love and respect. There is no room for hate.

And, I would ask that the country take a look at the good that the Cathey Foundation does with their Windship Scholarships and understand that they do not ask the sexual orientation of participants or even their employees. They do not refuse to serve same sex companions in their stores. You are perfectly welcome to kiss in their stores if that is what you want to do in front of children.

I did not eat at Chick-Fil-A yesterday mainly because there isn't much on their menu that I can eat save their Saturday morning buffet. I will be there bright and early on Saturday. Carol, will you join me? Even though I eat gluten free and do not like waffle fries, I do support their position. There are many shades of gray in the world and Christianity isn't devoid of them.

Mourning Cancer

Yesterday I saw on Facebook a picture of a beautiful child, bald from chemo and sitting in a hospital room. The caption said "Let's see if we can get 1000 people to say she is beautiful. Like if you think she is." Almost 300,000 people had already liked it. I was glad for that, but the picture made me cry a little. Then later in the afternoon I had a discussion with a colleague about his wife's deep depression following her treatment for breast cancer. I was brutally honest about the emotional toll it had taken on me and is still taking. At times, sitting in the cafeteria in view of all of our co-workers, we both had tears rolling down our cheeks. I don't know why I am the go-to girl for all things cancer at the corporate office, I know dozens of other survivors, but I seem to be the one that everyone turns too. This morning while driving to my yearly dermatology appointment, I was listening to The Fish Atlanta morning show and the song "There Could Never Be A More Beautiful You" came on. The combination of all of it hit me hard. The truth is cancer changes everything for the worse. You can't grasp the deep magnitude of it even when you wake up from surgery with a body that will forever bear the scars of your suffering. It has changed every part of your body, your spirit and your soul. The magnitude comes at you in layers, like an onion. It comes to me when I look at my lovely shaped and painted toes and realize that I can't get a manicure because I can't risk an infection in my lymphedemic arm. I can't bowl because it would put too much stress on my arm and I'd have to deal with the pain and swelling possibly for weeks. When I have to ask a manager to come to the mail counter to pick up their 15 pound package because I no longer have the abdominal muscles to make lifting it safe. When I take 16 pills every morning for conditions that may not even be symptomatic except that chemo weakened every organ in my body. It is the everythingness, the total encompassing of every part of me that cancer warped. Even my soul, even my spirit. In some ways it has made me stronger. I don't fall apart over all the little things. But in almost every aspect of who I am, it has left me crippled to some extent. So shortly after surgery that not all the drains had been removed, my cosmetic surgeon said "We don't want you to become a cancer cripple." At the time I was furious about the remark. Now I look at it and think, "There is no way he can understand how futile that battle is." So today, while that song was playing I wept. I wept because I can never be who I should be. I have made peace with my scars, but that doesn't make them go away.

This all sounds like a giant pity party. But sometimes the stars collide and I have to gaze into the chasm that cancer left in my life, and I mourn.