A Long Absence

So, my great apologies for leaving this blog abandoned for so long, I opened my own business in January, and meanwhile the job I have has been going full steam, at over 50 hours a week. Insane. Needless to say, I've had a nearly constant flare up for the last few months. My prescription for colchicine ran out, but I refilled it in March after I lost about 10 lbs and only kept food in me for a few hours. On top of that, I would have trouble breathing when I got really upset, and I would also get these weird twinges which felt like my veins were going to explode. They're actually visible bulging out of my hands and arms like this.

My hair had grown back, but now after about 2 months of colchicine, I have balding temples again. I actually mind much less than I initially thought....they make me feel strong, and proud. A mild battle scar, and not even from my disease. That's sort of one of the worst parts of an autoimmune disease....no one can see anything wrong with you, like a wound, and assume you're unwell because you don't eat much, not that you don't eat much because it makes you feel sick. Even odd swelling comes and goes.

 Oh yeah - here's a picture of the same hand from tonight as a point of reference to it's size and colour:

Here's my same hand tonight - no swelling

I posted one of those photos on my instagram a few months ago of my hand all purple and swollen, which was literally just responded to. How amazing of a tool can social media be? This is the first person I've been in contact with that also is dealing with/has a loved one dealing with Behcet's disease. Shoutout to Katrina, and her mother - you've reminded me I can't just ignore my illness until it's more convenient to my life; it never will be. And I have a ton of questions, and I suppose I have a bit of a mission too...

I want to ask questions, I want to be in touch with other Behcet's sufferers. I want to raise awareness in the medical research fields, brainstorm about what could possibly cause this, find people that know who to be asking hard questions to. I want to learn about foods and diets that help relieve symptoms, and what foods set people off. I want to create comfortable, soothing, and hell! maybe even sexy! underwear without panty-lines for when we have genital ulcers flaring up, and still need to go to work, meet clients, get to class, vaccum the house, get groceries, go to the bank...

The only thing that makes me want to stay in bed more than the ulcers on these days are these beauts:

Hate these, they get all bunched up.

Thumb of Disapproval

Nah-Uh.











I have lofty goals, and I'm aiming extraordinarily high, especially for a blog I can hardly keep up with, but hey - just cause no ones done this yet, certainly doesn't prove it can't be done. And I do have "aim high" tattooed on my wrist (family motto). So I can hardly do less.

I hope more and more people can somehow find themselves on this blog, and will please help build a resource of information to help each other, and others that get sick or find it later, and so on.

I personally feel a few things - the increased use of antibiotics in the last century plays a part. I think it could maybe be related to mold? Last summer I found 5 colours of mold growing on the underneath of my mattress at the cottage where I spent my summers for a decade. I think that the answers to most diseases lie in the billions of bacteria that inhabit our guts - I believe we have been given everything we ever needed to survive from the start, and that instead of looking without to destroy within, we should be looking within to strengthen the good stuff within.

I can't speak on the genetic part, as no one else in my family has any autoimmune disease, just cancer and high blood pressure. My biological grand-father was adopted, and left my grandma in the 60s when he ran off with his secretary. I have no way of ever finding out a quarter of my genetics, so I'm no help there. Apparently he was tall, dark and handsome, a swarthy Italian looking fellow, but I bare little resemblance.


I find yoga helps, but I haven't had time lately, and when my wrists get all swollen, there's no way I'm going to attempt a downward dog.




This is long and ranty, and I apologize, but I wanted to make an attempt to re-inspire this blog if I'm going to reference it, and share it with others. Cheers, and I look forward to hearing from you all some day :)

Love,
Your Favorite Gene
HLA-B51