So much to talk about! I’ve been sick for the last few months with what seems like one ailment after the other. To top it off, I don’t ever really seem to recover in between. I’m not full on flaring, but I am having a lot more symptoms of my Behcet’s which is aggravating. Of course the constant infections make increasing my Humira, or using steroids, a questionable decision.
Last night I decided to deep clean my room, including pulling off the memory foam mattress cover. I had intended to flip the mattress, and surprise surprise, there was mold all over the damn thing. The whole underside looked like a Petri dish, and little black spots all over the top…where I sleep…showed that the mold had gone totally through the entire mattress. Gross. I’m not allergic to mold, but I do know that I don’t handle being exposed to it well. I talked to my rheumatologist and she confirmed that tossing the mattress was the right move. She also said getting an air purify would be a must. It isn’t something I can afford, but it also isn’t something I can’t afford to ignore. Then I got some interesting news…my genetic testing for the gene mutation associated with Behcet’s came back positive.
Every test I’ve ever had for anything has been negative. The Behcet’s diagnosis hinged on symptoms, and I met the criteria, but of course being a caucasian female, a lot of doctors questioned the diagnosis. I could show up, papers in hand, and have doctors order a full list of other tests because they simply couldn’t accept that Behcet’s was causing my symptoms. Now I can say that I have the gene predisposing me to the condition, and the symptoms. For the first time in the 8 years I’ve been trying to get diagnosed, a doctor has said the words, “You 100%, without a doubt, have Behcet’s Disease.” Even my old rheumatologist made the diagnosis, but wouldn’t say 100% certainty.
It may seem insane to people who don’t struggle with a hard to diagnose condition. “How on earth could this woman want to be sick?” I don’t want to be sick, I just am, and I would continue to be sick whether the test came back positive or not. The positive result just means doctors take me seriously, and the tiny bit of doubt that my current doctors dealt with, is going to fade. Yes, I could get another autoimmune condition later, it’s not like having Behcet’s shields me from my family’s history of Lupus or thyroid conditions, but it does give me answers for now, and that is amazing.
As for the mattress…I threw it over my balcony last night, and then threw down as many blankets as possible and slept in the room that I’m sure is still full of mold spores. “The guy” invited me over but my stomach is still off, and I didn’t want to intrude on his space for two nights in a row. I’m definitely heading over tonight once I finish up some homework and shower. I’m not at a place where I feel comfortable being a total bum around him, even though he’s seen me very sick. I still very much would like him to see me as something more than casual, someday at least, and I don’t think I’ll get there as the girl with all the issues.
I’m hoping that the mold situation going away marks an improvement in my health. I know the first time I started getting really sick, was in an apartment with severe mold issues. I had a ton of GI symptoms, too, so it’s possible getting out of this apartment would really help my body recover. That of course requires finances, and when you’re in the midst of an amicable but strained divorce process, you’re not flush with cash. (You’re also not doing well financially when work cuts your hours to zero, and your second job has yet to schedule you for training!)
Despite all of this I just keep telling myself the good parts exist. Having that blood test really made me feel at peace. I knew I had Behcet’s, but I’d been treated as crazy for so long that I really needed more validation. The doctor telling me, with 100% certainty, that I had this condition, was a huge relief. Knowing something is different than having other people validate what you know as true.