Wednesday, March 16, 2011

A Very Difficult Day

There are things that I have not been sharing. Scary things.

I have been having episodes of "waking up" having no idea how or when I got somewhere or why I am doing what I am doing. Last Saturday I was in the kitchen counting silverware! ????  I also have times when I try to write but what ends up on paper looks like a 2 year old scribbling. I type texts but the are jumbled letters that make no sense.  We were reassured today that I do not have Alzheimer's Disease even though I have been convinced that this is January. Dr. Krishnaswamy thinks these things are related to my migraine headaches and partially to my dear friend prednisone. I must write a poem someday in honor (or horror) of dear prednisone - the drug that keeps me alive but sometimes make me question if I still want to be.

I shake pretty much constantly now. The prednisone is weakening all my muscles. My father-in-law had already told me that since he has been taking it much longer than I, but I chose to ignore him. I have developed that special hearing that patients get - you only hear what you want to hear.

As for cardiology - I have had a long cry.  My legs and feet are swollen so badly. Skin is peeling off them in sheets. My heart still races, I still get short of breath, and everything is just getting worse instead of better. Dr. Haddadin has decided to try a different drug in the calcium channel blocker class just to see if a different one might work a little bit better. If this drug doesn't work, things look grim. The last drug we are going to try is amiodarone. It has serious side effects and will be the last resort before invasive measures. I asked Dr. Haddadin if this drug wasn't worse than the ablation and pacemaker placement but he thinks it is not.  Here is a link to the side effects.  He said if I were 86 he would not hesitate to use this drug but it is not a drug you give to someone who is 46.

So life goes on and God sends blessings. I came home to find the most beautiful card in the mail with a gift that I know was given from the heart. I won't disclose the names of the couple who sent it, but they are true angels. It seems every time I am ready to give up God sends someone like them to give me the will to fight. This particular family has been such a blessing in my life.

Tomorrow, if I am up to doing it, I will start on my Social Security Disability appeal. The Idiopathic Anaphylaxis support group has been a huge help with making me feel like I am not alone in this. Someone pointed out that they may not even know what IA is. I am going to send every article I can print about the disease along with all the medical documentation. I have to write a hardship letter asking to be allowed to see a doctor because of the possibility of getting exposed to a trigger if I have to go to a hearing. You can also request a private hearing if I understand correctly. Most everyone on the support group was approved on the 2nd or 3rd appeal.

I am trying to remember that tomorrow is St. Patrick's Day and that way I should know that it is March. If not, don't be surprised to get a Valentine from me next month. - You have to keep laughing. :)

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