All the king’s horses…

Every time something scary happens with my health, I am forced to take a step back, and examine my treatment plan. The way we treat my disease changed significantly over the last year, since the symptoms of Behçet's Disease are not well controlled. The last few months have been quite the roller coaster ride, to say the least. I have been on chemo infusions every 3-4 weeks, and immune suppression for a year, but I still have the same swelling I started with.

When your doctor agrees treatment is not working, and it is time to try the big guns, it is kind of like a "holy shit, I was right!" moment, but it brings no joy. Instead I got extra blood work before I left that day, to make sure the drugs they wanted to try on me wouldn't kill me. I was so detached that I felt like I was floating next door to the lab. My pulse was roaring in my ears.

Normally, I am a pro at blood work, to the point where I barely even feel a butterfly. Not so much that day. I must have jerked as the phlebotomist went to remove the needle, but it's not like blown veins are not something I'm used to. (That's why my doctor suggested the power port in my chest.) I felt dizzy. The phlebotomist told me to stay in the chair while she grabbed me some juice. Typically it's not a big deal, but I guess my body was irritated about giving up nine tubes of blood before breakfast.

I tried to be a "normal" and thanked her for the juice. Two seconds later I tried to take a sip, bumped the ulcer on my face, which immediately started bleeding, and poured the mini-can of apple juice mostly down my shirt. I got a tissue, applied some pressure, tried to go crawl under a rock to die, but my partner was waiting. He sat so patiently while I tried to collect myself. I got the bleeding stopped, and used the few tissues I had left to mop up my soaked bra, and chest.

I wish in these moments I could remind myself that "normal" is a setting on the dryer, and everyone who was staring at me had their own bad days too, but the weight of my previous conversation with the doctor was heavy on my mind. They were going to get me IVIg. There was a good chance it could put me in remission, or at least quell my pain, and symptoms. I thought, "what have I got to lose?" and, "it's just another infusion," but within 24 hours of treatment, I knew I was wrong.

Most of the next two weeks were in, and out of the hospital (where I was admitted at one point), and doctor's office. It turns out the IVIg Infusion had caused aseptic meningitis. I am no stranger to headaches, I have had my share of migraines too, one lasting 9 days from elevated intracranial pressure, caused papilledema. They all paled in comparison to this pain. At one point my head, neck, back, and spine all hurt so bad I was being given intravenous dilaudid.

However, about 10-12 day after the IVIg infusion, my joints were feeling better than they had in over a year, and some of the swelling in my mouth went down too. I had to choose if I was willing to risk the pain of meningitis again in order to get that tiny window of payoff. I'm still on the mend from a hospital acquired infection, but here I go again… Chemo is this Friday, and IVIg is about two week from then. It will be two doses this time, given over two five+ hour infusions, two days in a row. I won't lie and say I'm not scared, but I'm willing to risk it once more just for the hope of a bit more time feeling "normal."

Fingers crossed!


When Apologies are Not Enough

I try to stay as positive as possible. With that said, positivity is something I have to actively strive for everyday. It does not come easy, or cheap when you’re fighting chronic illness, and on chemotherapy for life. I wake up in pain every morning, and go to bed in pain every night. There is not a day that passes pain free. With my luck, my chronic autoimmune disorder is rare, has no known cure, is difficult to treat, is linked to my vascular system (so it can go wreak havoc anywhere in my body), and is heavily exacerbated stress.

Welcome to Behçet’s Disease. It’s quite a lonely party, as there are only about 16 to 20 thousand cases in the US, and only one specific treatment center that most of us could never afford to visit. Milder cases, as I was when first diagnosed, can often be treated with just immune suppression. However, if patients are not able to “clear the deck,” and eliminate excessive stress in life, the disease becomes much more aggressive.

Symptoms of Behçet’s include oral, skin, and genital ulcers that often cause severe scarring, and can take months to heal. It can cause eye lesions (Anterior/Posterior Uveitis, and Iritis) that can lead to total blindness. Behçet’s also comes with all, or many of the same symptoms as RA (Rheumatoid Arthritis), Crohn’s Disease, MS (Multiple Sclerosis), and Lupus. Such mimicry can mean years of observation to reach the correct diagnosis, or have any success at treatment.

The average age of death for patients with Behçet’s Disease is 34.8 +/- 11.9 years old (Saadoun, et. al, 2010). I am 36 right now, so I have a maximum life expectancy of about 46.7 years old. That’s a tough pill to swallow when you’ve just finally got life together, and have fallen in love with Mr. Right. To say I didn’t plan for this is an extreme understatement.

So here is the question: given those facts, how do you forgive someone who had saw how sick you were, witnessed your death-like state on Methotrexate, and still took advantage of you? Not just a little bit, but did something they knew (and had said themselves) would destroy your family. Something so stressful, that pushed your body past so many limits that your stress triggered illness morphed into a horrific nightmare requiring increasing doses of chemotherapy, and immune suppression.

And what do you do when that person is a family member who refuses to admit the situation had impact, or that they were in any way responsible? I’m still clueless on that one, but I’ve got about ten years left to figure it out. (Far, far less time on this Earth than the one who turned my family upside down.)

Can anyone relate, or do you have helpful advice? Please leave your feedback in the comments section, below.


Saadoun, D., Wechsler, B., Desseaux, K., Le Thi Huong, D., Amoura, Z., Resche-Rigon, M., Cacoub, P. (2010). Mortality in Behçets Disease. Arthritis & Rheumatology, 62(9):2806-12. doi: 10.1002/art.27568.