#spondylitis

I had my rheumatologist appointment today. It's been 9 months (we usually do every 6 but I had a scheduling conflict). In those 9 months, I've done physical therapy and two rounds of trigger point injections, which got my body to a point where I could start actively working out again. I'm weightlifting because I love to lift things up and put them down, and progressing somewhat slowly because I don't want to put too much stress on my tendons bc they frankly suck at their jobs.

But today! Today during my exam I had only 4/28 inflammation-positive finger joints. And even then, mildly positive, like I wasn't jumping out of the chair when my rheum squeezed each joint.

My last appointment was, I think, 15/28? And several of those were strong positives (accompanied by a yelp or flinch). And that doesn't necessarily mean active disease but can include things like osteoarthritis as a result of the autoimmune arthritis, or scar tissue on the tendons.

And my knees and IT band were still positive but markedly less so.

So what does this mean? WELL. It means that after many years, and a lot of work, my joints are healing? Like it'll never be "all the way" healed because, uh, that's not how this works. My SI joints, heels, and big toe joints are, like, permanently fucked. Every step I take is still accompanied by pain. But. My hands and legs are much less janky, and I can do so much more, AND I can get the good endorphins from lifting weights???? And continue to have bones which is nice. I love not developing osteoporosis.

It’s about time I get something out in the open: after 25 years of living with autoimmune arthritis, I was finally correctly diagnosed with Behcet’s Disease, a rare form of vascular autoimmune arthritis. Now, you can either go look it up and be horrified, or keep reading and hear it from the horse’s mouth.

December 2016 will reign in infamy as the time my gut, that is the metaphorical gut that I listen to, could finally punch out for a much needed metaphorical smoke break. After 25 years, I finally found the diagnosis that explained every last oddity I had been mentally tabulating and attempting to connect. Then I napped. A lot.

Warning: if you find any of my following language offensive, or details TMI, too bad. I was pretty offended when my lady parts decided to start randomly developing ulcers. That’s right, ulcers.

November 6th I began feeling seriously - off. If you live with an autoimmune disease, you know what I’m talking about. My brain ran through known quantities, attempting to connect identified dots, create logical explanations that would lead to taking the best next steps. I decided on a scapegoat, and course of action with my PRN meds on hand.

November 8th I woke in the wee hours knowing this off feeling had moved beyond known quantities and I did something I rarely do, woke my husband early and asked him to stay home with me. It was also election day, and it was apparent I’d need great help getting to my polling location.

At 5am I was scanning my insurance website for the urgent care closest to me that seemed to also have their shit together. I arrived as soon as they opened at 8am, only to find a staff completely devoid of concern when I rattled off a laundry list of immunosuppressant medications - they didn’t even ask if I had pre-existing conditions. From the fetal position on the exam table, I explained to Dr. Judgmental that I have multiple severe autoimmune diseases and knew something was “off.” Her response, “I won’t give you pain medication, because everyone your age who uses them becomes addicted to heroine.” Hmm… ok, that’s not why I’m here. I politely explained I wouldn’t be needing a new Rx “because I have plenty of opioids at home.” Two can play this game.

After going over the immediate symptoms that brought me in, she asked if I had had new sexual partners and when my last STD screenings were. To which I explained my rock solid monogamous relationship of 8 years to her. Her response, “Woman to woman, men cheat and I would recommend full STD testing.” Two things: why is my husband automatically the liar in this situation? And person to person, don’t project your own relationship issues onto me.

I relented, because educated as I am, I still fear Los Angeles toilet seats and the urban legends they may house.

Thoroughly humiliated, I went home to begin weathering one of the worst weeks of my life.

Since I was a baby, I’ve gotten mouth ulcers. The first one when I was a toddler was so particularly bad that eating made me cry. My parents took me to an army medical clinic where they were laughed at. I have many recollections of these ulcers taking over my mouth through my life, and it wasn’t until I began anti-TNF treatment in my 20s that they began to subside [clue]. To be clear, a lot of autoimmune patients get mouth ulcers, but Behcet’s ones are slightly different - more severe.

I’ve been seeing the same rheumatologist for the last 6 years, and all the while I’ve continued to float various diagnosis to him. My gut has always said that we didn’t have it fully figured out with RA, spondylitis, and Sjogren’s (all of which I am still technically diagnosed with). My rheumatologist has entertained my repeated mentioning of EDS, especially given my family history, but said it wasn’t quite me.

Multiple episodes of severe bleeding through the years have been enough to make me terrified of getting in a severe car wreck, or dreading the day that I might need another surgery. Thorough hematology workups have revealed “something” is off, but they could never determine what. Surgeries of mine have been labeled as “severely vascular” and when a cast on my foot was taken off, nearly every surface blood vessel ruptured [clue].

Through the years I’ve learned words like “petechiae,” often used in the same sentence as “your body is shutting down.” I’ve read up on various rare diseases, letting the idea of them simmer on the back burner.

In 2008 I had arthroscopic knee surgery that became less than routine, as did my ensuing relationship with my world-class surgeon. One morning at 7am he called my cell phone to tell me to turn the TV on. It was the summer Olympics, and Sanya Richards-Ross was going for gold. She was also battling severe fatigue and ulcers, a diagnosis of Behcet’s Disease, and my surgeon wondered if this might be my answer too. I became obsessed watching this phenom win gold after gold! She has since been a source of inspiration and strength to me. But when I looked up “classic Behcet’s disease symptoms” I was oddly relieved to tell my doctor, well, I’ve never had vaginal ulcers so it can’t be that. NEXT.

Until I did get them. Let me tell you people, don’t fuck with a woman who’s body randomly produces vaginal ulcers. I now… how do you say? Give no fucks? When your body does something like this to you, even after living with chronic disease for 25 years, you suddenly have an entirely different perspective on life.

Revealing this diagnosis took an hour long conversation with my rheumatologist, combing through my medical history to look for clues that led to the ultimate aha and him saying, “thank you for being such a great historian.” I’ve had to be.

So, here I am now - putting all this out in the open. That’s something I was very nervous to do as someone who is so publicly open about her health. I didn’t want people thinking about me in THAT WAY. But several people reminded me that it’s not unlike Crohn’s patient advocates and their ability to keep it real on typically TMI topics.

I now feel comfortable in my *new* disease, having connected with several other Behcet’s patients on the DL (down low). For the first time in my life, I feel utter strength in fighting for MY DISEASE. For fighting for a better future for all of us living with this vascular form of autoimmune arthritis. We have no specific treatments, we are an orphan disease in the US, which lets our insurance companies play hard-ball on approvals for existing medications.

So to that I say, let’s fix that. Let’s understand this damn thing! So I am making a very sincere plea - help me raise the money for a dedicated Behcet’s grant through the Arthritis National Research Foundation. Once the money is raised, the foundation will do their due diligence in finding the right researcher(s) to bestow the funds on.

We only need $100,000 to make this happen - something I know can be done. Like I said (more politely this time)… don’t mess with a woman with Behcet’s Disease!

Thank you to Rare Disease Day 2017 for giving me the strength to be open about this. I am proud of my blue genes [jeans] and to band together with the other rare advocates.