Day 189-198 Visit with Dr Russian

Saw my lung doctor Russian today. He's happy about the PFT results being almost normal. He had originally said that if my results came back with improvement I would only need to do a PFT once a year but he's changed his mind. Now he wants me to have them every 6 months while I'm on the Imuran. He agrees with Yazici that as long as the inflammation in my lungs is able to be controlled while I'm on the Imuran I shouldn't need to stay on it longer then the two year treatment. This is good news and we keep waiting.

I also got a flu shot today. Came home and had terrible diarrhea and felt sick. Hopefully this is temporary. I'm not looking forward to my first flu and cold season with a suppressed immune system.

I woke up this morning with a rash on my arm. Not sure why, maybe it's from the garden or maybe I'm starting a minor flare. No ulcers though.

Not really interested in leaving my house these days. Not sure why. Guess you could say I'm not really sure of anything lately.

Day 185-188 So Confused

I'm still battling. So confused about what to do. I saw my Rheumie last week (yes, the same one). He was very pleased about the PFT results and said he would like to see me continue on the medication. bla bla bla

Day 177-184 Today my control is in the paint.

Just having the knowledge that the readers who know me personally will appreciate this post is about the only thing making me smile today.

I feel like I've lost control over my life. Joke right? Yes but no. I've always been a little out of control while always maintaining a "take control" attitude. Crazy and sometimes unpredictable. Fun but possibly dangerous too. There are times when I'm content, at peace and happy. Then there are those other times when I'm just plain not. At some point in the last month I lost the control of my course.

I've lost control of my health and health care so my marriage, mothering and friendships suffer too? Everything is linked together and when one fails, it feels like everything suffers.

So what am I doing about it? For the last 2 weeks I laid on the couch. I had a nasty cold and used it as a wonderful excuse to do nothing. The Fall sun shined and the late blooming flowers showed their faces but I didn't enjoy them. I got up long enough to accompany my best friend while she delivered her 3rd baby, Sophia Jean Williams. I also helped another friend search for a different suffering friend. I spent an evening out at a Spa, I thought it might help but it didn't. However, what did help was paint. I started to paint the walls in my house. Color is amazing. Today my control is in the paint.

Day 171-76 Undeniable truth.

The question that seems to be coming up is "Now what, are you going to come off the meds?" I don't think so. I need to talk to my doctors. If my results had come back unchanged it would be a much easier to throw in the Imuran towel. I have a feeling the docs will suggest I stay on for the duration of the treatment (full two years).

This is probably hard for many to understand, but the results were a little sad for me. I'm not ungrateful that my lungs are better but the results have solidified my pulmonary Behcet's diagnosis. There was always a part of me that was in denial. "Nah, my lungs aren't really being affected by the Behcet's, it's a coincidence. It's actually residual damage from some kind of environmental exposure." The fact that my lungs have got better with this treatment makes for an undeniable truth.

Day 168 - 170 What was your bet?

If your bet was anything but BETTER you LOST!!! Yes, that means I lost too.

Here's my diffusion capacity history for reference:

2/19/07
DLCO 15.2
56%

4/8/08
DLCO 16.6
60%

4/3/09
DLCO 18.0
66%

3/29/10
DLCO 15.8
60%

4/6/10
Started Imuran treatment

9/22/10
DLCO 18.9
74% TODAY!

My DLCO is significantly better! My lung volumes are also up.

Life is good!

Day 163-167 'You've got enough breath to bitch'

What you first need to understand is that my life is filled with humor and sarcasm and I wouldn't have it any other way. David and I were having a discussion about my symptoms and my appointment next week. I was harassing him, telling him that he didn't even know I had a PFT next week because he doesn't read my blog. He explained that he lives with me and doesn't need to read my blog to know I have a doctors appointment.

"Yes, but how can you place a bet when you don't read my blog?" I asked.

His response was "Well my bet is that they are better. Besides isn't it obvious? You've got enough breath to bitch!"

I gave him some big kisses in between my fits of laughter after that little comment. I love you David and yes Sweetie, i will always have enough breath to bitch!

Days 156-162 No email

Well I got side tracked and didn't send myself an email last week. Trying not to think about it too much. Trying to stay busy with things and stuff to keep my anxious mind at ease.

Lucy is having trouble sleeping lately and it's making for some really rough days. I'm tired on top of already being tired.

I mostly recovered from my flare but have had a couple ulcers linger. I think part of the problem is that I went two nights without my evening 50mg Imuran dose.

Not much more to report. My PFT appointment is next Wed but I won't be able to see Dr Russian (Pulmonary) till mid October. No worries, I'll be able to decipher the test results on Wednesday.