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

Made a Dr.'s Appointment!

So, being fairly new to the Canadian health care system, I haven't had much of an idea where to start at. Obviously a provincial health card is the first step, and mine will be coming in the mail soon, active January 1st.

I've had a great resource in a friend, she knows a few doctors and is familiar with the almost rat race that happens once word gets out a good doctor is accepting new patients. She spoke with one of her Dr. friends, and this Dr. referred me to Health For All, a clinic that opened last year in Markham.

In her email she said:
I would recommend she go to Health for All, which is a Family Health Team right beside Markham Stouffville Hospital which just opened last year and is accepting new patients. They are associated with the University of Toronto and she will get excellent care there. They will likely refer her to one of the Rheumatologist’s associated with the hospital about her Behςet’s disease.

She even spelled it with the accent!

I've set up my appointment just now, and I have a scheduled meet and greet on January 11th. I will definitely update on how this appointment goes!

Just an FYI when looking for a doctor: There is a website with the premise of Rate My Doctor, much like rate my professor, which I think could be a great resource when trying to get an idea of who's compassionate, who's an arse, and who can really be of benefit to you with your disease and treatment.

There is also a Canadian one and a more specific one for each province.

Gastro problems, and Alcopecia starting?

Hi there, been a long week. Had a final Monday night, which I think I did okay on, although I could have started studying earlier. It's been a fairly long week, but I managed to find time and energy to dye my hair on Wednesday. It took a while, and I had a lot of hand, arm and shoulder pain by the end of it, but it's done.

I've almost completely lost my appetite, starting a bit last weekend. On Sunday I did the usual "I'm not hungry, but I should eat." My lunch passed through me in about 6 hours. I'm never eating tomato soup again, let me tell you! It's unnerving. But this movement was more like diarrhea, having bouts and burning, where as most of the time it's more like having a normal BM. Needless to say, I felt a bit too sick to study much that night.

Monday I started having some really odd stomach cramps, which I've never had before. I often call my lower abdomen cramping (which for almost my whole life would come for hours before a BM) stomach cramps, they're just debilitating, curl up and wince and bellow pain. But these were higher up, and actually in where I believe my stomach is. I just felt, mildly nauseated but more in pain, and they were worse if I tried to eat, so I stopped trying. Tuesday was the same, though later in the evening I reheated some pasta and scarfed it down. I've been feeling better since Wednesday, and making sure I eat everyday and as much as I can, since I lost about 4 lbs in the first part of the week. It hasn't gone back up again yet, but it stopped dropping.

Then I got the stomach cramps again today, around 4 and again around 5. I haven't tried to eat anything yet, but I really do just find them bewildering. They're also different from hunger pains, they're just..new. Are they side effects from the Colchicine? Or new symptoms?

Alcopecia:
So, the side effect I found myself quite concerned with from Colchicine is alcopecia, which is when your hair falls out. Whether it's genetic balding, odd periods of random spots of baldness, or drug/treatment/toxin related, and it refers to any hair growing on any part of your body.

I sometimes freak out about things a little hastily, so I've been trying to ignore a bunch of odd observations I've made and just operate around them. For instance, I've started noticing quite a few eyelashes on pillow and sheets in the morning. More then I ever have before. But I don't want to jump to conclusions and assume I'm going to lose my eyelashes and buy false ones in bulk from the Drag Queen Emporium (I only wish there was one of these btw).

But a few days ago, and more prominent today, I noticed a sort of...gap in the hair on the right valley of my widow's peak. It also has a great big zit. Awesome, right? I'll post a picture if I can figure out how.

Ok, I have a photo of the gap, and a photo of the other side of my head to compare.
Acne Gap:

Other Side:

Ho.Humm.

Sorry this post has been so lengthy and perhaps ill-focused. Just to briefly cover the rest of my symptoms since I last posted:
very sore right hand and weak wrist and thumb, left hand weak last night as well. My ulcers are seemly slightly more painful, but I was able to...be intimate... with my boyfriend last night for the first time in a month. I'm not sure how explicit to get on here, because I know children also get Behcet's and I don't want any information in here to be inappropriate should they find my blog, but at the same time, this doubles as a health journal. If anyone reading this has an opinion on this matter, please feel free to chime in now.

I will be posting specifically about the steps to find a new rheumy very soon, but I have to wait until January for my insurance coverage to kick in before I will be making any visits.

Have a good weekend, and do your best to stay calm during the holiday craziness, all anyone needs is a flare up at Christmas or Hanukkah.

Love,
HLA-B51

December 2

Last night, and worse this morning, I was so stiff. Like, difficult to roll out of bed -stiff. Still quite still now, so today is a slow moving kind of day.

Just some history: On the 20th I saw my rheumatologist for the first time. I was asked a barrage of questions by the nurse, and I remember one being if I woke up stiff, and how long it lasts: minutes, hours, all day? I said hours. It's always kind of difficult to answer these questions, because there's the When I'm Flaring answer, and the When I'm OK answer. I wasn't flaring at the time, but I started on Friday, thanks to Thanksgiving stress (sigh).

Also to note: my Rheumy prescribed me Colchicine to treat my symptoms. I started that yesterday; it took me a while to man-up and brave the side effects listed. Currently I'm experiencing the diarrhea listed, and I'm hoping the alopecia stays at bay.

Things I want to know:
- Good Rheumy in Toronto for Behcet's
- What sort of supplements can I take to help with my ability to metabolize vitamins and essential minerals/proteins etc. since the Colchicine inhibits my body's ability to do that, and my body was already having trouble digesting salads.

Looking for a way to

Keep a health journal, and also share my experiences with others going through the same thing. I'm usually bad at updating these things, but I'd really like to try, so please bear with me if you happen to begin following this so soon.