Day 304 A Good Scolding

Went and saw my Rheumie today for a follow up and meds check. He wasn't very happy that I've missed my last 2 blood draws. I should have had blood drawn in December and then again last week. I just keep forgetting! I stopped taking my Imuran earlier this week in order to allow the antibiotics for my bladder infection to work and also so my body can help fight the infection. Today is my first day back on it. The stress in my life is like none before and it will be a true test for my disease. I know the stress will pass and I just need to keep my eyes on the horizon.

Day 301..Batting zero

Hello everyone. Damn, life truly has a funny way of throwing curve balls at you. I'm a living testament to that. I don't think I'll be coming off the Imuran in April to get pregnant. I'm not really sure how much longer I'll be able to take it. Nor am I sure if I'll even have health insurance come April.

Aloha!

Not too much to report on my health. Still on the 150mgs of Imuran per day but I'm stopping it in April for pregnancy. It's decided and I'm super happy about it. Need to go see my Rheumie but first I'm going to enjoy this week in Hawaii and the family we're visiting.

Old Year

The last couple weeks have been busy. I haven't been very diligent about taking my Imuran which may be a good thing since the stress of the holidays always seems to drag me down and I end up getting sick. The extra antibodies were probably helpful. Unfortunately I've been back on track now for a few days and I'm getting the cold that Lucy just got over, tis the season for runny noses.

Looking forward to tomorrow. I haven't gone out for the new years in a very long time. My husband and I usually stay home, fall asleep by 11 and it's great. This year the kids have been invited to have a slumber party at Granny's. I figured Dave and I would stick to our normal tradition however, the more I think about shitty 2010 being over the more I want to celebrate. This year we'll celebrate the New Year by celebrating the end of the Old Year! Maybe a nice dinner and some dancing.

A day in the 200's

‎...some time the week before Christmas;

...church, shopping (bad idea), home, dinner, Scrabble game with David; 208-me to 207-him (apparently he's been practicing), oven caught on fire (apparently it's broke), cat started falling over (apparently she's sick)

I'm here...I'm HERE!!!

I've been busy with the holidays. I did a little traveling in attempt to get me in a more motivated mood and it worked. I came home from a friends house in Idaho with a new inspiration to join forces with my husband. For some reason we have always had separate rooms (but slept in the same room together). In some sense it makes sense (pun intended) because he works swing shift and it's easier on our family. The separate rooms has been causing me stress lately and I desperately needed a change. He was reluctant at first, he hates moving furniture...especially when stairs are involved.

I haven't been very good about taking my evening 50mgs of Imuran and I ended up with 2 huge ulcers in my mouth and some genital ulcers as well. It's just a nasty reminder of why I'm sticking with this shitty treatment. I have more to say but I'm tired. I hope you all are well.

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!