I haven't been blogging everyday and the blogs I have posted haven't been very nice. Betawriter commented (thank you) on my last post about how he/she appreciated my positive outlook. I had to chuckle a little at that since the last thing I've been feeling is 'positive'. But...Betawriter and my new friends Joanne and Stephanie have given me a renewed sense. Joanne and Stephanie both have lung conditions associated with Behcet's. Neither are exactly like mine but I guess I'll have to settle for being special. I hope you all know that unless you tell me "this is confidential" I will openly talk about your conditions and symptoms...I guess I should have mentioned that before, huh? I'll wait until you send me a nasty gram before I say anymore with your name attached ;)....
I was talking with someone about my Imuran therapy and how it has been pretty good to me. Of course I will know more next month when I do a PFT, but the main point of our conversation was infection. They were concerned about taking an Immuno-Suppressant due to the possibility of infection and the fact that they are allergic to many different antibiotics. This was also a huge concern of mine as well when I first started taking it. I'm allergic to penicillin which rules out a large spectrum of antibiotics for me if I get an infection. Fortunately I have been lucky enough not to have any major infections. In fact, at my Rheumie appointment last week I pointed out that I was a bit concerned about it. I told him I thought I would be sicker then I have been if the Imuran was really suppressing my immune system like it should be. Now don't get me wrong, I have felt my body working to fight harder then ever since I've been on the Imuran but I guess I expected the worst, hoped for the best and got mediocre.
So does it mean the meds aren't working if I don't catch my death from a nasty bug? His answer was 'no', everyone responds different to it. He asked me if I'd been around 'sick people'. WTH? Of course I've been around sick people...I have kids and I actually leave my house sometimes. The meds have to be working right? My ulcers are gone (for the most part)!
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Ok, you did it. You inspired me to do something big. Really.big. Back in January, when I couldn't sleep for the umpteenth night after being diagnosed with Behcet's, I got up, and I started a blog. Somehow I managed to get two entries up. I barely managed to navigate myself through it, and then I swear to doggies, I lost the ding dong password. I haven't been back since. Then I met you on Facebook, and it happened. I couldn't ignore what I needed to do. I dug through my email tonight until I found what I needed, and I reset the password. Then I managed to get to the site, and I wrote an entry. Wasn't any easier than the first time, but I did it. I will figure this out if it kills me. I figure if you can come here and write about Behcet's, then I can do my part and get this evil disease out in the open where it belongs. I will do this. :)
ReplyDeleteStephanie J
WOO HOO!!! I love it! This is great...send me the link to your blog and I'll put it on here.
ReplyDeletelol...shows how much i know! all you have to do is click on "Hearteecho" to get to Stepahnie's blog!
ReplyDeleteI meant "heartheecho"
ReplyDelete