Warning: this post contains sexual content
I met with my new rheumatologist on Thursday, and was hoping to get some good news. It’s rare that I want to be on more medication, and I’ve managed to actually decrease my medications over the last year or so, but lately life has been a struggle. It’s not that my Behcet’s is more severe, at least not in a profound way, it’s just that for the first time I want more out of life, and this is forcing me to confront the reality of this disease.
My soon-to-be ex-husband was a constant source of stress and that stress led to repeated flares. He was verbally and emotionally abusive, long after the physical abuse ended. My PTSD made it hard for me to come to terms with his abuse, or confront it, so I lived in a bubble. He’d never wash his hands despite my insistence that he do so, and when I would get sick he’d lament that I was always sick. We were high school sweethearts, who had only taken one three month break in our 13 years together, so I wanted to expect more from him but simply couldn’t. I decided I was never going to rely on others to take care of me. If I was ever sick enough to need to ask for help, I’d just go to the hospital.
When we finally separated in July 0f 2015, it was a relief. Our marriage was probably over for a solid three years, but I was raised in a Catholic family where, despite having parents with multiple divorces under their belts, divorce was still a rather taboo subject. I can honestly say I didn’t love my husband for the last year of our marriage, but I kept trying to convince myself that he could become the person he used to be, and then I could be back in love with him. The reality is, he was never the person I thought he was. Who I thought he was, was someone he constructed to look a certain way to the outside world.
I had only ever slept with my husband, so it was hard imagining, at 29, being with another man sexually. After a few weeks, I decided to at least go on a few dates. They were disastrous. I have severe celiac artery stenosis, which causes abdominal pain, and nausea. It isn’t clear whether or not the narrowing is Behcet’s related, though most doctors have agreed that when my Behcet’s flares and causes vasoconstriction, the blockage can leave me with no blood flow whatsoever. Toss in a host of food intolerances, and allergies, and you’ve got one really pleasant date. (Note: sarcasm.) My first date went well. The guy understood that I couldn’t eat much, or drink alcohol, so he bought me a Sprite and we laughed and talked for almost two hours. He gave me a really sweet kiss goodnight, and that was that. When I didn’t hear from him again, I assumed he wasn’t interested in going out a second time, so I went on a date with another guy. This time the man was clearly concerned not only by my explanation of why I couldn’t eat at the restaurant (so much dairy and gluten) but also by the fact my soon-to-be ex was military. He faked an emergency, and left.
Eventually I ended up contacting the first guy to see if he wanted to go out again. I’d been trying the bar scene, but it was a disaster for a variety of reasons. It turned out the first guy I went out with had been politely going on with his life because he was looking for a sexual relationship, and that was something I’d been sort of clear wasn’t on my radar, at least not in terms of a casual hook-up scenario. My reticence was multifaceted. For starters, I was with the same person for so long, I wasn’t sure I could throw myself into sex with someone else without the emotional connection. The second issue I had was the issue of potential infection. I’m not talking about STD’s, but actual infections we all have to worry out without sex. Even after he’d kissed me, I did a mental check of when the last time I’d injected Humira was, and if I’d taken steroids recently.
That’s the reality of autoimmune conditions and dating. If the symptoms of the ailment don’t tear you apart, the risk of infection does.
I did end up having a brief sexual relationship with the guy, more because I needed to get past the mental block I had of thinking no man would want me, but also because I was attracted to him. It could have continued, but I was moving, and he was looking for something regular and close to home. I won’t go into details on others, between then and now, but there were others. One man refused to listen to me explain why I had to be careful in certain positions, and I ended up with a raging infection. Bladder to kidneys in a matter of hours, leading to massive pain, and an inability to stomach my seizure medication, which led to a hospital admission for neurological observation. That’s right…one jerk, who can’t comprehend what your needs are, can lead to weeks of frustration.
I’m seeing someone now, and I thin the only real issue is the stress. He’s gotten me sick once, though to be fair I had a scratchy throat as well, so it’s possible we both got each other sick. We’re dating, but there is no label, and no exclusivity, though for the time being it would appear we are both only seeing each other. It’s hard because I feel like if we were formally exclusive I could point out things that right now feel as though they could drive him away. Then again, the first time I spent the night at his apartment, I pulled out my pill bag, and announced that I had an autoimmune disorder. Being science-y like me, he asked which one, which of course required explaining because it’s not something most people have heard of. He recognized most of my meds, and 4 months later we’re still spending time together.
Still, it’s hard. He brought me necessities when I was down with a kidney infection, and I hated asking for help. He was actually surprised I’d asked, and figured I must be insanely ill if I was actually asking for assistance. Normally when I’m sick I want everyone in the world to leave me alone, but all I wanted to do was curl up in his arms.
Dating with a chronic illness bullet points:
- Did you wash your hands?
- I love to bowl, I want to go bowling…do you know how dirty bowling balls are? Here’s some hand sanitizer.
- Did you wash your hands?
- You were out of town, were you around anyone sick?
- Dry cough or sick cough?
- Something you ate, too much alcohol, or are you getting sick?
- Tired or fever?
- Yes I’m tired, I’m always tired, that doesn’t mean I’m too tired to go do stuff.
- I have Behcet’s, it’s a disease not a vow of chastity. Unless I have an outbreak in the girl parts, which has only happened once, we’re good to go.
- No I’m not contagious.
- No it’s not HIV.
- No it’s not like HIV.
- Stop asking if I have HIV.
- I can’t eat that.
- I brought a granola bar, I’m fine.
- Yes, I’m fine.
In my mind a million things go on, and I want to say them but I can’t, so I go from wherever we’ve been, to his apartment, and in the back of my mind I calculate the risk of exposure against the risk of pointing out he’s exposing me, because it’s a balancing act. Now that we have confirmed Norovirus outbreaks here, as well as the flu, it’s going to be a different ballgame.
I had hoped the new rheumatologist could give me something for fatigue. That’s the biggest thing. My brain wants to go and do and see all these things, but my body slaps me down into reality with a vengeance. I went out last Saturday for a friends birthday, only for a couple hours, but only caught a few hours of sleep. Since I’m recovering from a massive kidney infection, my body freaked out. I ended up having a seizure in my morning class, being transported by ambulance, and informed that the pain medication I was taking for my kidneys was actually contraindicated for seizure patients. On top of it my potassium was randomly low.
Behcet’s related? Who the hell knows. That’s the joy of Behcet’s. My new rheumy informed me that there wasn’t anything that could be done about fatigue. We talked about my break through flares, namely that I’m starting to break out in skin ulcers a few days before my next Humira dose. She was hesitant to increase my dosage because of some liver enzyme issues, so she ordered lab work first. She also wanted to make sure I didn’t have a secondary autoimmune condition at play.
Oh, have I not mentioned that, because of my family history, and the fact I have psoriasis, I’m at an increased risk for developing autoimmune thyroid conditions, or Lupus? Yeah, apparently when you’e got one, you’re risking more.
I told her I just wanted to feel normal, and while she gave me a sympathetic smile, I could tell that unless I went into remission, that wasn’t going to happen. For now dating is like laying Russian roulette with my body. School work, family visiting, wanting more out of a casual relationship than just a casual relationship, navigating a complex divorce, and then remembering I have to take care of myself, too.
By the end of June I weighed 190 pounds. Now I’m 148. I’ve been around 135-140, and been happy, the problem is that the weight loss has been at a sharp decline recently, and for the first time I’m forcing myself to eat. I’ve entered that stage of life where, as a single woman, going to graduate school, caffeine is a normal staple of my diet…but as a woman with an autoimmune condition it really can’t be.
I put myself first, I do, but sometimes I hate myself just because I can’t control what happens inside my body. I can take the pills, sleep whenever possible, and try to eat healthy, but external and internal variables often make life unpredictable and less than ideal. Even though I was in an abusive marriage, I want to be in a happy stable relationship. My ex once said nobody would love me, because I’m too sick, and I think part of why I push myself so hard is because I’m desperate to prove him wrong. I am sick, but I’m not always too sick, if I just took a minute to focus on my physical wellbeing I may actually have a shot at a period of remission.
PS: I’m going to blog twice today. So if you want information on medical Marijuana, you’re in luck.