Saturday, March 5, 2011


My father-in-law gave us quite a scare. He was taken to the hospital by ambulance on Thursday night with a blood sugar of 30. He was admitted and has had 3 units of blood so far, and is feeling better. We are so thankful that he is getting well.

I have recovered from the flu. After getting the PICC removed I have stopped having the strange reactions that were occurring with the flushes. The blood cultures were negative so we assume the reactions were autoimmune in some way triggered by the flush. Dr. Krishnaswamy says the PICC may have to go back in but we will keep it out as long as possible.

My pulses are running some lower on average. This is great. The bad part is that my blood pressure keeps bouncing from high to rock bottom. The changes in blood pressure make me dizzy and weak. It is hard to keep it at the tight level.

I am still averaging about 1 anaphylaxis per week. We have raised my prednisone dose back up some but I have stopped Plaquenil. We could see no change with it and it has too many bad side effects to take it unless it shows real benefits. I am seeing Immunology every 2 weeks now because I am considered unstable.

My cousin asked me to explain what all the medications I take do - I am still trying to figure out how to explain it. I worked in allergy for 6 years and went to many classes on the immune system. It is very complex and hard to understand. In order to explain what is wrong you really need to understand how the normal immune system works. Some of my medicines suppress antibodies. Some block histamines from attaching to cells. Some block leukotrienes from attaching to cells. Some stabilize mast cells. I also have medicine to slow my heart rate, lower the amount of acid produced by my stomach, cause my body to hold in calcium, remove fluid, and reduce inflammation. It might be easier to say what I don't take. There is very little information on Idiopathic Anaphylaxis, even in medical textbooks. Some of my doctors had never heard of it until I was diagnosed.

Scott continues to have severe back pain. He can no longer feel his feet. It has been a couple of years since he had an MRI to check the status of his tumor. For those who don't know, he has spinal lipomatosis. It is a fatty tumor growing inside his spinal column which compresses the nerves causing pain, numbness and weakness. As the tumor grows, the symptoms get worse.

I really don't like writing all these negative things, so on to some positive...

My little grandson is right on target with everything. The picture is his 21 1/2 week ultrasound. Casey and I have decided he looks like my dad. He kicks all the time, and if you poke his mommy's belly he will kick you. Casey got moved into a new place with more room for all the baby supplies. We are quite baby obsessed.

Kristen likes going to school at Tri-cities Christian, but is still leaning toward home school for next year. She is rapidly turning into a teenager.
Knitting is flying off the needles - mainly baby items. This is mostly because Louann and I are knitting together again. We aren't physically together but text or message each other while we are knitting. We miss spending time together so much. We haven't both been well enough to see each other since October. I haven't been able to spin because of hip pain, but am planning on getting my wheel back out and trying to learn to treadle with my left foot. It is strange that my feet seem to be like my hands - I am very right handed and right footed LOL

Overall, things are much better for us than for many other people. No matter how bad it gets we always see some other family in much worse shape. We continue to ask for God's will in our lives and the grace to accept whatever that may be.

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