Saturday, March 23, 2013

Vile Disease

I hate this disease. I'm tired of my skin burning like fire with an itch that is almost like pain. Tired of swelling and nausea. Tired of my airway closing so that I cannot breathe. Tired of the drugs I must take to keep this beast at bay.

I'm tired of feeling bad for the doctor's who cannot cure me. Tired of the giving money to hospitals and doctors and mostly, the pharmacy.

I'm tired of not being able to sleep or not being able to wake up - never just normal.

I am tired of the weight I have gained since this beast came to live in my body. Tired of the belly. Tired of the double chin.

I'm tired of living with a fear that if I go outside my home I may be exposed to something that will cause the beast to raise it's head. Tired of being afraid for anyone outside my family to come in my house.
Mostly, I'm tired of not being able to work - not even take care of my house.

 I'm tired of it all.

So I escape. I take trips in my mind because my body won't allow me to go in life. I am just home from Scotland because I have been reading (listening to)...

Dragonfly in Amber. I really cannot convey how good this book is. It is a 40+ hour listen and you don't want to miss a minute. It is superb - really.
My latest history obsession is the Borgias. We watched season one of Borgia on Netflix. When we watch something historical I like to read some of the history to see how much of the show is true. The Borgia family is more interesting than the Tudors.

 Speaking of the Tudors...
I just read the Anne Boleyn Collection. This is a very informative piece documenting why the common conception of Anne Boleyn is wrong. There is research showing that Anne did not commit adultery and therefore her execution was purely a set up by Henry VIII and Thomas Cromwell. This is interesting for any English history fans, but if you aren't into Tudor history, skip it. You would be bored.

Last Saturday, Bentley took his first fire engine ride. We met my brother, Mike, at the fire department. Bentley was interested in the fire engine, but when Mike turned on the lights he wasn't very impressed. After his ride, he wanted to stay in the engine. He kept trying to get Mike and Daddy to put him back in there and would point at the driver's seat wanting to ride. He makes me smile. 

Sunday, March 3, 2013

"Last of the Summer Wine: Home Comfort" & Sad Thoughts

I got to read Peggy Poe Stern's latest book on my Kindle. I have become addicted to that little e-reader. I find it hard to read paper books now. The Kindle lets me adjust the text size to my liking. With my eyesight not being what it was, this is a real advantage.
I enjoyed the book. It wasn't my favorite of Peggy's novels, but was still a good read.
We are covered in snow here on our little hill in Mountain City. We have had flurries all day but no real accumulation.
My latest immunology appointment was not my best. Dr. Kazmier had been to an immunology conference and had spoke to the "experts" about my case. It seems there is only one drug left to try, and it has serious side effects. We are trying stopping a large percentage of my medications. It is one last thing to try before I have to think about trying the bad drug.
I have had a really bad day. I had to use my Epipen for airway swelling. This one has wiped me out more than they had been. I think maybe the medications were helping with that. It will take a few days for the medications to fully be out of my system. It is a bit scary, but if I don't try this we will never know if it might be a drug interaction causing my problems to continue.
I know that I was not on all these medications when the problems started, and I was only on Benadryl at night when I had to go in the hospital the second time for anaphylaxis. I am humoring Dr. Kazmier because he just really does not want to start me on this last drug. I think we are both afraid it won't work, and also afraid that if it does the side effects will be devastating. He is really worried that it may push me into complete renal failure and require me to be on dialysis. It is really not a good thing either way.
As is usual for me, when I am faced with these big changes, it affects my mood. I really feel like I am a hopeless case. I know there are people who have been living with IA for years; one since the 70s. They know how I feel, but it is impossible for anyone else to completely understand. My friend Evelyn, who lives in Malaysia, suffers much more than I do. She just passed her 4 year IA birthday. Below is a link to her blog post on her "birthday". She expresses how this disease feels so well.
Sad Birthday Evelyn. Wishing you a good night's sleep.