Family in Town…Body Down!

So work, trying to date, and school, have all been huge stressors lately. I thought I was handling things well…until my mom came to town for a visit. Family visiting in general is exhausting, whether I’m traveling to them, or they come to me. I have this doomed sense of obligation that ends up leaving me completely spent within days of their arrival. This trip has been different, because I had the seizure on Sunday an they arrived the next Wednesday.

When my father visits it’s definitely easier. He has lupus, so the gets it on a fundamental level. Some days we go for long walks and sightsee, other days we sit around and do nothing. My mom is different.

Her first night here she laughed and told the story of how I thought I had arthritis when I was 10, but it was just growing pains. Then the story of how she felt bad when I was a teenager and told her my periods were bad and she ignored me, only to later find out I had massive ovarian cysts. Only, she didn’t really feel bad, because she made a snarky comment about how high her pain tolerance is, and how she just couldn’t understand my point of view.

I have an insanely high pain tolerance. When I had my knee surgery in November, they refused to numb the area after because they knew I needed to be in pain so I wouldn’t push myself. They’d witnessed how far I’d push through pain before surgery, and there was a major concern I would mess my knee up after.

Did I have arthritis at 10? No, but I did have Behcet’s symptoms back then. I would have mouthfuls of sores that nobody thought twice about. It’s entirely possible that the pain and irritation in my hands was Behcet’s related, though I’ll conceded it would be odd for the disease to hit that early in life.

I was telling my roommate how frustrated I was today because I woke up with a headache, and I didn’t spend time with my mom and her boyfriend yesterday because I was playing catch up on school work…but there is no way for me to convey how exhausted I am to my mother. Thankfully my dog is being a trooper and reminding me that I need to relax. I went to get a pedicure with my mom a couple of days ago, despite feeling very dizzy and sick, and apparently the dog went absolutely insane the moment I left. Roommate was perplexed because usually he just snuggles up with her once I’m gone and doesn’t even bother looking around for me. I remembered, of course, that I’ve trained him to be in tune with a variety of symptoms related to the Behcet’s and because I left mid health crisis, he was trying to get to me to alert.

In a world where “you don’t look sick,” is one option and, “you look tired,” is the other, it really feels like a lose/lose situation.

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Family in Town…Body Down!

Alternative Medicine – Marijuana and Me

So most of my friends smoked pot in high school, or at least tried it. If they didn’t try it in high school, they tried it by college. Me? I was a drinker. I never had an interest in marijuana, even after I developed the allergy to alcohol. When I first lived in California six years ago, I got my medical marijuana card. I hadn’t been diagnosed yet, but I was suffering, big time. For three weeks I could barely consume more than 400 calories per day, and those calories came from Pop Chips. Nothing of nutritional value could get past the nausea barrier. A friend pushed me to get my card, but I was afraid of the repercussions should I want to find a new job. Pot is illegal on a federal level, so even if my state allowed medical usage, I couldn’t use it if I applied for a position that required drug testing.

After moving to New York, and then returning to California, I started to think more about the possibility of medical marijuana offering me relief. My nausea was intense, my anxiety was hard to measure, and overall I wasn’t sleeping well. There was a lot of stress involved with divorce and dating, and my Behcet’s seemed determined to flare as often as possible. I got my card, and the doctor noticed the lesions on my legs and recommended I use a topical to clear them up. A friend told me when I was ready she was involved with a group of moms who medicate, and would help me navigate the world of weed. I’d never smoked, was terrified of the idea, but I was also really sick.

The first time I smoked I did it on my own using a vape pen and the cartridge it came with. I felt weird. I kept forgetting what I was doing, but then something glorious happened. Without realizing it, I wasn’t nauseas. It wasn’t like the relief I got from Zofran, where it hit me suddenly, and then left me a few hours later. Instead I gradually realized I was hungry, not the munchies, but genuinely hungry. The nausea was gone, my mood was great, and overall I felt better. Immediately I appreciated whatever it was in this little vape pen that made the girl who hadn’t eaten in 18 hours desperate for food.

I smoked with the guy I was (am? it’s complicated) seeing, and that time was even better. I didn’t get too hungry, but the relief physically in terms of my stomach and my anxiety was even more noticeable. Perhaps being with someone I liked, and being in a positive frame of mind, helped heighten the experience.

Post knee surgery, marijuana was what pulled me out of a three day funk in which I ate nothing, and barely drank water. I was hours from hospitalization, but instead I used my vape pen, and was on the mend in less than an hour.

Medical marijuana isn’t for everyone, and I’ve barely scratched the surface, but so far I’ve recognized it’s potential as something that can really help me overcome the debilitating effects of my autoimmune condition. A friend has suggested I try some of the strains that give energy or euphoria, but I’m worried they may irritate my anxiety and PTSD. Of course, if there was something to fight this fatigue, I’d consider it, especially since there is no pharmaceutical option at this point in time.

I’m still scared about drug testing at work. One job will test me if I’m injured at work, while the other doesn’t particularly care though I’m sure there is a stigma attached given the nature of the work. My major is in forensic criminalistics, which means any job I want post-graduate school, will undoubtedly mean peeing in a cup. I’m fine with stopping the use, and I only smoke rarely, maybe once every couple of weeks, but it would be nice to have the option to do it more. My marijuana doctor has said he’d prescribe marinol for me, which is federally legal, but I think the natural substance is likely a better option for treatment than the synthetic one.

Stigma. It’s funny how it works. I’ve only been high 2-3 times in the months since I’ve gotten my card, and honestly two of those times were accidents. When you have no tolerance, you don’t always gauge what you need to get over symptoms properly. Did I enjoy it, yes, but that’s not why I use marijuana. I’m on pills, tons of them. I take pills to take care of side effects of pills that I’m on to take care of side effects for the actual pills I was originally prescribed. (Read that back a few times!) With marijuana it’s simple. Yes I have to use caution when it comes to strains and amount, but with the help of people who know what they’re doing, it seems like a valid way to manage a host of problematic symptoms.

I won’t say I’m pro making it legal recreationally, but as a medical treatment on a federal level, it definitely should be. When doctors tell patients with chronic debilitating illnesses there is literally nothing medicine can do for them anymore, and then they find out smoking marijuana or (ingesting it in some way) helps them enormously, how can we stand by and judge them for opting to utilize it? I am not a stoner. I don’t smoke and drive. I am not an advocate for people who smoke daily just to smoke…but medically? When your life is crumbling around you because you can’t eat, you can’t sleep, you’re in pain, and your quality of life is poor, you do anything you can to feel better.

Alternative Medicine – Marijuana and Me

Dating With Chronic Illness

Warning: this post contains sexual content

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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.

 

Dating With Chronic Illness

EEG, Kidney Kidney Kidney, Walking for Days

So today I had an EEG, which was actually supposed to have been done a month ago but the technical got attacked by a dog. (I thought it was a cat but I was wrong. Whatever. I claim autoimmune fatigue brain!)

Anyhow, I havne’t had an EEG in probably 8 years, mostly out of stubbornness. I was having seizures, but several in office EEGs, along with one 48-hour mobile EEG, and a weeklong in hospital monitoring EEG, came back normal-ish. There were changes in my brainwaves that weren’t considered normal, but they weren’t associated with epilepsy either. Worse was the fact the doctors couldn’t seem to agree. One neurologist would say that the activity indicated potential seizures, while another would say it was unrelated. Eventually I gave up. I stayed hydrated, avoid fatigue, gave up alcohol, and things seemed okay. Keyword: seemed.

I later learned what I was calling “funny episodes,” were potentially partial seizures. I had thought I was having TIAs, but my CT scans were normal. After being made to feel crazy, I stopped bringing up the attacks when I talked to my doctors. If they were nothing then they were nothing. Why bother wasting the time talking about it, right?

Only they weren’t nothing. In June an attack generalized into a large seizure, and again in November and Sunday. The one in June led to me being transported via ambulance to a large hospital where the neurologist listened to my ex explain what had happened, and what we’d caught on video. The video is embarrassing for me, so I’m not going to post it, though I will try and upload a still from the early (potential) partial seizure. I get auras, though not always before the partials, but the partials come on slowly so I never find myself shocked and suddenly weak on one side with lack of speech. The neurologist at the hospital looked me dead in the face and asked how long these episodes had been happening. I had to admit for years, and he was dumbfounded. According to him I’d been walking around having seizures without realizing it. Partial seizures don’t result in a loss of consciousness, which is why I remembered everything. They can, however, generalize, leading to tonic clonic (formerly known as grand mal) seizures.

My primary care doctor asked about my EEG results, but obviously I don’t have them yet. When I told him about the ER not wanting me on Tramadol, he nodded and suddenly remembered that was a bad medication for patients with a history of seizures. Whoops! We’re apparently ignoring the low potassium level, for now, though I’m guessing at some point I’ll need to have my levels checked again. Rheumatology tomorrow to see what they think about my medication routine. I’m having a lot of break through flares, or flares starting up when I’m at the end of my 2 week Humira cycle. You can inject weekly (ouch) but my liver is a little upset as it is, so we’ll have to wait and see what the lesser of the evils is. There is also a chance that steroids become a regular part of my life. Yuck.

Everyone applauds my upbeat attitude to events that strike them as terrifying, and I think it’s because I don’t know how to be any other way. The reality, though, is that I’m terrified and exhausted. I feel behind with work and school because I’m focused on trying to recover from infections that would bother most people, but destroy me. My mom comes into town today to visit, and she hasn’t really taken any time to look up my condition, nor do I expect she ever really will. She’s just not that kind of mom. It’s hard, but it’s just one more thing to deal with I suppose.

Hopefully tomorrow’s rheumatology appointment brings some answers, because I definitely need some better treatment options!

EEG, Kidney Kidney Kidney, Walking for Days

Obligatory Introduction

So, I’m likely going to vlog at some point, but for now I’m going with blogging. For starters, it’s easier to search when people are looking for information. Secondly, I don’t have to put on makeup to write in a blog. Vlogging will require at least some foundation!

My journey to diagnosis was long, but that’s common with Behcet’s, especially if you’re an atypical patient. I’m a caucasian female, with no Asian or Middle Eastern ancestry. I have a strong family history of autoimmune disorders, but my when my symptoms began to disrupt my life, all my blood work was normal. I’d dealt with severe canker sores as a child, I’m talking several at a time, so big they would cover my entire out, but my family just shrugged it off. I was one of those kids. Salt water and spit, and move on with your day. As a teenager my balance began to get funny, but I was tall and gangly, so we chalked that up to klutziness.

At age 20 I went through a traumatic experience that left me with PTSD. It was frustrating because I’d been dealing with physical symptoms around this time, too. I had fatigue, joint pain, and severe abdominal pain, nausea, and diarrhea. I lost a ton of weight, was sleeping 17 hours a day, and couldn’t get doctors to take me seriously. Most wanted to chalk everything up to PTSD, and leave it at that. Finally a gastroenterologist looked into my gallbladder, and realized I was almost in gallbladder failure. This was after a prior gastroenterologist had labeled me anorexic and bulimic! Surgery eased some of my abdominal symptoms, but not all of them. It did give me the drive to seek answers. I was 21-years-old, too young to be as sick as I was.

I started at rheumatology because of my family history. My father and aunt both have lupus, and other autoimmune disorders plague the paternal side of my lineage. My mother is adopted, so we don’t really know what I could have inherited from her side, however, she’s barely 5 feet tall, and blonde, so the chances she’s asian or middle eastern are pretty much zero. My rheumatologist saw my family history and announced he was sure it would be lupus, but to his surprise, my blood work was normal. Over the next few years I was poked and prodded, and each time the doctors were frustrated. My rheumatoid factor did come up positive, but just barely. Not high enough to diagnose me with rheumatoid arthritis, and my ANA was consistently negative. The first rheumatologist had put me on plaquenil, which seemed to help with the fatigue and joint pain. I didn’t feel normal, but I wasn’t feeling like cold death either.

I moved across the country, and the new rheumatologist felt that lupus made the most sense, too, but he couldn’t diagnose me with the condition. I simply didn’t meet the diagnostic criteria. He was aggravated, and reluctantly labeled me as having a “lupus like syndrome,” or “mixed connective tissue disorder.” It was the IBS of rheumatological diseases. If you have IBS, you know you have it, and it sucks, but if you have something that seems more severe, and they can’t sort it out, they slap you with the IBS label and wait for things to worsen.

For me, things did get worse. I’d had periodic seizures, which I was briefly medicated then unmedicated for. I gave up alcohol, and was careful to get enough sleep. My balance worsened and neurology nonchalantly announced they felt I had multiple sclerosis, or a degenerative ataxia. I had six months to show improvement once they ruled out MS, if I didn’t improve and things actually worsened, they were going to push for testing for the rare ataxia. The test would cost me almost a thousand dollars, and there was no treatment. I’d basically find out whether or not I was dying, and be given the time to prepare for the inevitable.

While all of this was going on, I was also having dental issues, migraines, and GI bleeding. I kept feeling like it all should be related, minus the dental issues, but of course I couldn’t find one thing that covered all my symptoms. I’d watched a show years earlier about a woman who spent years waiting to be diagnosed with something and nearly went blind before discovering she had Behcet’s. I dismissed the disorder because I had no eye involvement. Sure, I had some days were I was severely sensitive to light, so much so I couldn’t even open my bloodshot eyes, but all my eye exams were normal.

Finally, just after turning 28, my dentist of all people, got fed up with my situation. I needed extensive root planning done, and he simply couldn’t do the work because of the number and frequency of canker sores I was getting. He told me the sores were ulcers, worse than the canker sores he was used to seeing, and that the frequency and number I was getting at a single time, concerned him. He suggested I see an oral pathologist, but the doctor had a long waiting list. The second option, was to go to my rheumatologist to see what they thought about the situation.

I thought he was insane. Why would my rheumatologist care about my mouth? As I sat in the office, I thought about ways to apologize for wasting his time. He sat down and I explained that I was doing okay, but that a couple weeks earlier I’d had more canker sores than I could count. We started talking about other issues I’d had, including bruising, and skin lesions on my face that had appeared to be acne-like, but weren’t acne. The spots had confused my dermatologist, who had then been relieved when they healed courtesy of steroids without leaving a scar.

“I know what you have.” He was delighted. His face was like a kid on Christmas who just got exactly what the wanted. I was shocked when he told me it was Behcet’s. He asked about my response to having my skin pricked for blood draws, an while I never had an issue, I did react violently to allergy testing. In fact, they thought I was allergic to the needle itself until they realized I was just hypersensitive to being stuck. That’s when I learned my allergy testing had amounted to a positive pathergy test. The raised bumps had lasted for weeks.

Getting the diagnosis was bittersweet. I wasn’t crazy, but I had something rare. Really rare. All my medications would be obtained off label, which meant insurance battles for coverage. I would need to see a host of specialists because the rheumatologist may handle my main medication, but GI issues, neurology issues, and all the other issues that occur as a result of having the disorder, have to be managed by the appropriate specialist. Each time I see a new specialist I cringe. Some are excited to have a patient with a rare condition, while others would much rather stick to the predictable. The worst scenarios I find myself in, are when I’m up against a disbeliever.

“You know that’s really rare right? Who said you have it?” The judgment questions. As if I didn’t spend seven years trying to sort out what the hell was wrong with me. I run down the list of symptoms, followed by my family history of autoimmune diseases, and just hope that the doctor I’m dealing with can handle it. If not, it’s on to the next one. The ER doctors are often the worst. They still cling to the PTSD diagnosis as the culprit for so much. I’ve had a few abnormal lab results since then, but nothing high enough to warrant the respect of doubtful physicians.

Recently the issue has been seizure activity. For the last few years I haven’t had any big seizures, so I considered myself seizure free…but that wasn’t actually the case. I’d been having what I termed, “little episodes,” on and off, since before my PTSD. The right side of my body would get numb and tingly, words would get hard to find, and sometimes I even felt drunk. The episodes could be as short as 15-30 seconds, or as long as several minutes. Sometimes one episode would lead into another, then another, until they became a blur. In those instances I often found myself lapsing into unconsciousness and having a full tonic-clonic seizure. Half of my neurologist refuse to accept I’m having seizures, despite EMT and physician documentation during the episodes, while others accept them despite the normal EEG results. I’ve never had an event while hooked up to an EEG machine. (I have another test tomorrow.

I think that’s been the hardest part of Behcet’s, or at least one of the hardest parts. The abundance of normal lab work exists, so it takes a lot of convincing when it comes to making specialists see that something really is wrong. I hate being made to feel like a liar or faker, and while I am technically a little crazy, I know the difference between my PTSD symptoms and my seizure/Behcet’s symptoms.

Getting diagnosed was a relief, but now I struggle with helping the people around me, including medical staff, understand what my disease means for me and my future.

 

Obligatory Introduction