Day 227 Shout out!

Thought it would be a good idea to point you in the direction of Joanne Zeis, she also has a blog called essential behcet's. You can find her newest post about flu shots at the link below and also on my blog under "Some sites for info on Behcet's" . I always find her reference articles very useful...Thank you Joanne!

http://behcets.blogspot.com/

You can also visit Joanne's website at www.behcetsdisease.com. Joanne states on her website that;
"Trying to find appropriate treatment is hard enough. Finding well-written, comprehensive information about Behcet's disease shouldn't be one of your frustrations."
She is spot on with this statement. Unfortunately I don't provide 'well-written, comprehensive information', however I will give you a good sob story anytime. Thanks to Joanne and everyone else that puts in the effort to help all of us sufferers. Did I mention she has written books on Behcet's? Make sure to check out the "Books" link on her website too.

From reading through the essential behcet's blog today I stumbled across a post;

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.

JOIN HERE: http://rarediseasesnetwork.epi.usf.edu/vcrc/registry/index.htm

So I registered...now it's your turn!

Day 226

My last post was a little dark and gloomy. Sorry about that. I decided to go off my Imuran last week. My husband and I talked at great length about it and decided it would be the best thing for our family. I feel outraged that I have to take this damn medicine. This is the time in my life when I'm supposed to be having babies and building a family. David and I both want another child before our youngest gets much older. If I complete the full two year treatment our daughter Lucy would be 5 before our last baby is born.

I went off the Imuran for 1 day then started back on it. Part of me is scared to stop it and the other part is desperate to stop it. I'm going to go back to my original goal of 1 year.

Day...whatever-222 I shouldn't ignore you

I'm ignoring you. I could say that I'm too busy or don't have much to say but I have lots to say and think about writing often. My mind is filled with things to write. I realized today that although my excuse for not writing has been "Maybe later when I'm feeling better", this is not the true reason. The real and true reason is because I'm scared to admit what is really going on. If I acknowledge it, I have to accept it. If I accept it I have to deal with it. Dealing with it means facing it and frankly I don't know if I'm ready to do that. Honestly I'm not even sure what "it" is.

What I do know is; I feel angry, ashamed, hurt, confused, bitter, jealous, lonely and scared. What I'm not feeling is happy and complete. The term "biological clock" never meant anything to me until now. Some women's is stronger then others and apparently mine is on steroids (just a figure of speech, I'm not on steroids right now and for future reference prednisone sucks ass). I also know I have the most amazing family and if it wasn't for unconditional love this would be a much different story.

Day... whatever "fine, good, nothing"

The three standard answers; good, fine, nothing

How are you? good
How are you feeling? fine
What have you been up to? nothing

I don't know what day it is on the Imuran count down. I'll figure it out later. I just wanted to touch base with the cyber world and update you. The rash on my arm turned into a rash on both my arms. It has since gone away but lasted for about 7 days. Something was going on with my eyes a couple days ago. Not sure what. I thought it was pink eye, minus the pink. They seem to be better today.

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.