Hostage Negotiations

So I had my Rituxan infusion on Friday, and spent most of Saturday feeling okay. I wasn’t loving life, but I wasn’t as miserable as I thought I might be. In fact, I was even able to walk the dog a couple blocks that night and visit the guy. (It was only fair since I basically raided the local supermarket’s entire stock of Italian ice, and he spent the entire day with me the day before at the infusion center.) When I woke up on Sunday, though, things were not good.

First off, I woke up at 1pm. Which, I’d been up till almost 4am with the cold sweats and cramps, so it wasn’t too much of an oversleeping situation, but still. My body was heavy and I just felt like I had the flu. I decided to hang low, which is what I did, but I started noticing a disturbing symptom taking over my body. The aching in my muscles gave way to a tingling session that started in my face and moved along the outside of my body. As it progressed down my legs, it combined with my exhaustion, and sore muscles, and left me unable to really even support myself standing. Now I was worried. The pins and needles were making things like typing a text, impossible, and I couldn’t really even get myself out of a chair to make it into a Lyft or Uber. I ended up having my complex security call 911, where the ER doctors were perplexed by my symptoms. As weak as I was, it was a weird sort of weakness stemming from my muscles spasming when I tried to use them. My reflexes were extremely hyper-reflexive.

I got transferred to the Naval hospital, a place I despise, but tried to stay up beat. I needed an MRI, which I couldn’t get until the next day, and I couldn’t walk. I wasn’t going home, and I wasn’t going to be allowed to hang out in the ER. I had to be admitted, which unfortunately for me means going to the shitty military hospital here. I was admitted around 1:30am, but still saw two doctors and many nurses. I stressed the importance of my medications, particularly the seizure and nausea meds. I also indicated I couldn’t sleep without sleeping medication at home, so I’d need something to help me sleep there in the hospital. I was told I’d get all meds at my usual times, and I reiterated I was only concerned because in the past I haven’t gotten my meds from that facility.

By 3:30, I’d received no medications. I pushed the call button and a nurse came in with a blanket, and I asked about my medications. He logs into the computer and tells me the doctor only ordered three of my drugs, none for sleep, and that all the medications were put in for 9am. I was already 2.5 hours passed my schedule time for my Keppra, my main seizure drug, and it had been well over 24 hours since my last dose of Neurontin, something that also prevents seizures, but ironically can also cure the symptoms I was admitted for.

Yes, you read that correctly. I was admitted for suspected peripheral neuropathy, potentially relating to Behcet’s, or the Rituxan, and they knew giving me my NORMAL medication would ease the symptoms if they were correct, but wanted to wait several hours.

I had to argue with the nurse, and several corpsman regarding the importance of not missing seizure medications. I couldn’t believe I was having this conversation! I was sleep deprived, sick due to dehydration, and now unmedicated. How could they not realize the danger in this situations? By 4am I was given my three medications, but nothing for sleep. When I asked a nurse who came in with something for me at 4:30 if it was to help me sleep he said yes, but then informed me it was a heartburn medication. Knowing not sleeping, and missing a bunch of my meds meant I was still at high risk for seizing, I started to test out may painful feet. I could move now, I was just weak. I started to demand to leave.

It took four hours from the moment I declared my intent to leave against medical advice, to actually be allowed to walk out of the facility. I had an IV in place, but had received NO fluids. In fact, the damn thing hadn’t been flushed once since placement in the civilian ER, where I had been mercifully given some fluids. I wasn’t even on monitors at the naval medical center, despite their concerns that my weakness could move from peripheral neuropathy into something more central.

Yeah, one of the reasons they tried to talk me into staying was the concern that this could spread. I had to point out at home I had friends, a roommate, and a service dog, whereas at the hospital I had nothing, and wasn’t even on a monitor. Better yet was the doctor telling me my vitals had been stable through the night, when nobody had done a check until I started insisting I wanted to leave around 4am.

I was bullied, strong armed, and treated like garbage. One nurse tried to make me feel thankful for the free medical care, citing her son having to pay $240 just to be seen in a civilian ER with his non-military insurance. I looked her straight in the face and said I would gladly pay if it meant I’d be cared for. All I’d done was worsen my condition by coming into their hospital. They lied about my discharge vitals, ignoring my 185/90 blood pressure, instead doing repeat manuals, and arbitrarily assigning something around 146/62 as my official number. I never have blood pressure that low, especially without sleep or blood pressure medication. I’d also been crying for over an hour.

When I finally got up to go I was exhausted and had some trouble walking. Noticing a day shift nurse went to get a wheel chair, and the nurse who tried to make me thankful for my free care, cattily goes, “Leave her, she wanted to go, she can go.”

I cried all the way home in the cab, and I’m still shaken. I know it’ll take a couple days for my sleep pattern to regulate, and I have to be extra careful now about seizures. I’m livid that I wasn’t allowed to leave despite the severity of my neglect, and the fact that they were not providing me with any care. Worse, I could have done more for myself at home. Even their attempts to feed me were miserable. I informed upon intake I was on a restricted diet, but received a breakfast I couldn’t even eat if I tried. I was made to feel like it was my fault, that I was crazy and irrational, and being overdramatic. Like I wanted to leave simply because I hadn’t received all of my usual meds.

When you have a complicated medical history, and you’re on a specific regimen, it’s critical to stick to it. Failing to do so can be seriously catastrophic. The negligence was one thing, but their cruelty in its execution defied all fathomable rationale.

I’m working on a formal complaint, but its scary that this is my only option when it comes to being admitted. I actually plan on talking with my insurance company to see what can be done. If I have to threaten to sue, at this point it’s worth it. They falsified records, in front of me, and even took vitals once I’d been discharged. I was poked by incompetent corpsman who had zero regards for safety or sanitary conditions. The whole thing left me shaken, and got worse when the guy was frustrated that I’d pushed to be discharged without the imaging study. He just can’t understand what those of us who have been in this hospital know: it’s not safe.

A friend was there, and had become hysterical for the same reasons. Not receiving medications, etc. When she got anxious, and her blood pressure went up, they decided she was emotionally unstable and held her for 72 hours. Thankfully she told me because I nearly met the same fate. She said she’s repeatedly had to remove her own IV and just leave, because they won’t discharge you, or let you sign out AMA, they always have an excuse.

We’ll see if the complaint goes anywhere. They’ve almost killed me in the past, so I doubt this will do much, but it’s unacceptable. I felt intimidated, like I wasn’t allowed to leave. 4 men, in uniform, to backup one doctor, a nurse, and a social worker? That’s not necessary. I wasn’t being psychotic I was just insistent on leaving.

Now I feel like this sick waste of space when it comes to those around me. I haven’t done dishes or cleaned the apartment so I feel bad. Then there is the fact I worried the guy and several other friends by dropping of the map when I couldn’t feel my hands and feet. I keep telling myself it’ll get better, but it’s so hard to deal with when things like this happen.

Hostage Negotiations

Don’t Mind the Dying, I’m Still Alive

Today I sat on the couch, and I thought about dying. Not that I wanted to die, or that I thought treatment would kill me, but the amount of effort it took to get to the couch, and the enormous amount of pain I’d been in upon waking up, I honestly could only thing about death. I don’t think that’s something people who don’t deal with serious illnesses really can understand, so if you’re a healthy person reading this, thinking I’m suicidal, or whatever, let me try and explain it as best as possible. Note: I’m heavily medicated so whether or not I make sense, won’t be entirely clear to me until I re-read this at a later date.

When I woke up this morning (or yesterday I suppose since it’s after midnight now), I registered that it was Monday. I also realized it was almost 1pm. I went to sit up, and was immediately struck by two things almost simultaneously. First was pain, horrible pain, shooting through my spine and into my hips, along with a headache that made me wonder if I’d finally had a stroke. The second sensation, was nausea. Now, I deal with chronic nausea, and I knew this was different. This was flat out, “I’m in so much pain my body wants me to vomit,” nausea, and I knew I could fight it by just not moving. So I didn’t. For twenty minutes I registered that I needed to pee, and wanted to get up, but that the pain was simply too intense to get out of bed.

When I hit twenty minutes, I contemplated peeing in bed. I have a mattress cover. 

Eventually I was able to roll to a seated position, and crawl from bed into pajamas that at least covered all the essential bits and pieces. My roommate had been out late the night before, and I wasn’t sure if he was home from work because of it or not, but I didn’t need to be exposing myself on top of everything else that was going on. I made it to the toilet, and then pulled pillows, heating blankets, and electronics from my bed to my couch. I was sure I wasn’t moving today, but I didn’t want to throw off my sleeping schedule by spending the whole day in bed. If I napped on the couch, so be it, but if I stayed in bed all day watching movies and TV, I’d never sleep that night. (As it stands it’s almost 2am, and I’m still awake, so I guess sleep is still elusive.)

I had to think about a lot in the waking hours. Namely, as terrified as I am regarding Rituxan treatment, I can’t live life the way I am. Even typing this is painful. My joints scream, but I feel this urge to write it all down, get it all out, not knowing if I’ll be too sick tomorrow to write more, or if treatment will mean hospitalization and further restrictions. The infusion center set me up with a first thing in the morning appointment Friday, but there has been some discussion regarding my desire to be treated at a different (closer) hospital, and actually to be treated in a hospital…period. Infusion centers near hospitals are nice, but my body likes to go rogue, and I don’t love the idea of being somewhere where the protocol is to call 911 when things get rough.

It will get rough. That’s my life, in a nutshell, rough.

The pain is all consuming when it hits the large joints. I’ve dealt mostly with hand and ankle pain, but the back and hip pain that has found me in the last several days is a new kind of pain that pushes me into that odd realm where mortality is a thing. I don’t have cancer, but I’m staring down drugs used to treat cancer, or help with organ transplantation. I’ve had friends ask about bone marrow transplantations, and whether that could yield a cure. I myself have wondered about autologous stem cell transplantation as an option, even if that meant hospitalization of several months, and no immune system whatsoever.

Risks. Side effects of all my medications, mixing together, and almost all including that little side bar: death.

You think about death when you’re chronically ill, not because you want to die, or don’t want to die, but because at some point you have to acknowledge that it could happen. My dad once joked he could pull from his 401K because he was never going to get old. Now he’s probably wishing he had saved some more money. Remissions, flares, risks, rewards, we stare them all down and haggle with the happiness because we know the disappointment is coming.

I want to live. Not just like I am now, with a pulse, but honestly, truly, live. The guy recently mentioned the fact that Rituxan could actually give me a quality of life back. He always insists I’m normal, but I’m not. I know I’m not. I have a rare condition, and it means that I’m not normal. I get sick easier. I take dangerous drugs to manage symptoms. I live in a world where not sleeping enough could cost me my life, literally. Still, I want to live.

When I wrote work today to let them know I’d need time off, it was hard. I knew that I could, and would, be applying for disability, at least for a while, but it was one more punch to the gut. One more lack of normal living. I like bartending, even slow shifts with coworkers I’m not that fond of. I like feeling like I’m making my own money with my own abilities, even though I’d rather work a 40 hour week in a laboratory, because that’s my degree, and my passion.


Dying isn’t just something that happens to your body. It happens to your dreams, too. I’ve adjusted my majors, my expectations of myself and others, so many times it’s started to seem like a never ending cycle. I’ve developed a despondent self-loathing that I really need to let go of. I feel dysfunctional, broken, less worthy of love and affection, because I’m not healthy. I don’t live my life, because the part of me that expects to be treated as a whole person died when my health died.

I’m not sure if Rituxan will work. I don’t know if I’ll be lucky and go into remission and avoid dangerous secondary infections. I don’t know if the guy I’m seeing will ever look at me the same way now that he’s seen me sick numerous times, and is about to watch me go through some intensive IV treatments. A part of me has died, it died when I was 21 and knew I had an autoimmune disorder like so many in my family, and it died when the final diagnosis came 7 years after that. With each medication escalation, dreams died, I changed, and while the fight in me has never died, and won’t die, I do wish I had more of who I once was, left inside of me.

You’re happy to be alive, but you’re also sad that you’ve lost or changed so much of who you once were, in an attempt to save yourself. Sometimes you don’t recognize the person you’ve saved.

Don’t Mind the Dying, I’m Still Alive

Talking About Fertility When You’re Trying NOT To Get Pregnant

Oh the joys of having an autoimmune condition, while navigating a contentious divorce, and a new casual, but complicated, dating-like relationship. With the failure of Cimzia, Rituxan is on the horizon, and the guy I’ve been seeing has been amazing about it. Despite our casual status, he’s all hands on deck, taking me to the ER when I was too stubborn to go this past Thursday, and researching Rituxan to put my anxious mind at ease. Still the ER brought about some interesting conversations.

First off, there was the fact I go by my maiden name socially, because I’ve been done with my ex for a while, but still have to legally use my married last name for documentation. Nothing like the guy you’re seeing handing the nurse your military ID card with your dependent status, and of course, spouse’s name, and information, all right there, because you’er too high on pain killers to navigate your purse, and too in pain because you’re still in pain, to care.


Then there is the inevitable, “Any chance you’re pregnant?” question that comes up before they drug you and take x-rays. I’d already given my last period dat to the nurse in triage (sans the guy) but because I have an IUD, that date is always spotty (no pun intended) at best. Still, I’m definitely not pregnant. I wasn’t 20 days ago in the ER when they checked, and shocker I wasn’t when they ran my urine this time, too. Of course that doesn’t mean the guy didn’t have that moment of pale faced terror when the question was asked.

Definitely not. No chance at all. Yes I’m sure. 

This hasn’t been the first time the subject has come up recently though. With Rituxan on the horizon, Cytoxan has been discussed if Rituxan fails. Moreover, some doctors have suggested waiting a year to get pregnant once Rituxan is stopped. So if it is successful, and fingers crossed it will be, I’ll still have to choreograph future pregnancy around it. At least I won’t ever be accused of getting pregnant to trap a guy?

My doctor has told me that Rituxan isn’t the drug of choice for my level of Behcet’s involvement, that it has shown promise, but that doctors have been using Cytoxan, the chemotherapy agent, for a longer period of time. Essentially, it’s efficacy is perceived to be greater because it has a longer track record. The dosages would mean that I could because infertile.

As I spilled my guts about all of this, the guy I’m casually seeing, I realized how absurd the interplay really is. We are casual, but he wants to know about my condition. We’re casual, but he wants to be there for me through my infusions. We’re casually, but in the ER we have that moment of, “Yes I promise there is no chance I’m pregnant,” and I know on some level he’s relieved because even if a girl tells you she has an IUD, and you believe her, there is a small part of you that is grateful that she really honestly is that convinced her birth control works.

What about the fertile part of it though? Can he possibly understand, in the context of us being casual, what my fertility means to me? I was married to a man who lost his ability to have children without the use of IVF, and I loved him. We fell apart when his continued infidelity, and straight up narcissistic sociopathy made it impossible for me to try and make it work. Plus I stopped loving him somewhere in the midst of realizing he was a narcissistic sociopath.

I stare down this path, with a drug that could work, could bring on a remission that allows me to live a more normal life, and I’m excited, and scared. I stare down that path with a man by my side who I call my friend, because he is, above all else, exactly that. I know that we’d be there for each other, regardless of the other aspects of our interaction (yes, I’m avoiding the word sexual relationship). We don’t say we’re friends-with-benefits, because that sort of feels like it devalues our friendship, and honestly, I’m okay with that.

If a time comes when what I want, and what he wants, means that we no longer have a sexual relationship, I hope we can find a way to preserve the friendship, because we truly have been there for each other through so much and when he says he can’t imagine life without me, I believe him. I feel the same for him, and while I may be more emotionally invested, I’ve backed away lately to view it in a different manner. Yes, I care about him, I care for him, but I also care about the life lessons he’s teaching me.

Still, fertility is as sensitive subject, and even with a friend, or casual relationship-type-thing, it’s hard to broach the topic. We ask our partner if they’re preventing pregnancy, but it’s usually a muddled mess, somewhere between, “condom?” and “the condom broke,” and the people who don’t bother asking at all, are those of us who genuinely want a conversation about preventing pregnancy, the options, and an honest answer. When I got my IUD, it was easy to tell this guy, “I have an IUD, I can’t get pregnant due to my medications,” and I left it at that. I didn’t think I’d end up having him absentmindedly make a statement one day where he said, “Someday when I have kids,” and have my reaction be to think about it, because he rarely does talk about the future. He worries about it, but he doesn’t plan it out, and he never talks in certainties.

For the first time, I’ve hit my own potential certainty, that being I may never have biological children. The thought of going through chemotherapy scares me, but the thought of being 30, mid-divorce, and losing my fertility, after leaving an infertile husband, is just sort of cruel karma. It’s like the universe put together two people who would end up unable to procreate, but they left each other, and now we’re slowly helping with population control.

That’s assuming I end up infertile, which the guy has tried to assure me won’t happen.

He like stop point out I’m a rarity, because I am, and that there aren’t a ton of articles in which there are a lot of research subjects, because Behcet’s patients are rare, and near-Behcet’s patients are rarer. He’s offered to write researchers on my behalf, playing up the drugs I’ve failed, the reasons why my case is complex, and the various statistics that make me a prime candidate if they can get my treatment funded. It’s all positive, which is what I need, and scientific, which is what I need even more, but there is something kind about it, too. Some women find chocolate sweet, but this does it for me.

Except maybe it shouldn’t. What if he falls for me? What if he realizes he wants more from me than casual and then they put me through chemotherapy? What if I can’t travel the way we both want to, and I can’t give him children? All of the future fears, the fears that usually plague him, the what-if-this-goes-wrong thinking that he’s so good at, comes tumbling out of my brain.

Because that’s chronic illness.

I could start Rituxan this week, and be in remission within 2-3 months, or it could fail miserably and I could be on chemo within the same amount of time. I can’t know, and so I approach the future with a wants vs. needs mindset. I’m so good at knowing what I want, while he hesitates because he’s afraid if he wants something, and changes his mind, people will be disappointed. The part that sucks is knowing what I want doesn’t stop me from worrying I’ll disappoint people, because I’m never sure if I can live up to the wants and needs of myself or others. My body is the unpredictable thing, and sadly it’s attached to me.

It’s hard trying to maintain a casual attitude when your life feels so damn serious. I do take things as they come. I don’t have expectations when it comes to he and I, simply because it doesn’t do anyone any good to expect things from someone just because they’ve done one thing, or offered to do another. Sometimes I worry I’m a drain on him, but I tell myself that he’s an adult, and arguments could be made both ways. Friends have insisted I’m limiting myself by not dating more guys, but I don’t have the energy, or desire. I like this one, and I’m fine with just him.

Still, the casual take-it-as-it-comes attitude get’s a little jostled when the doctor nonchalantly asks more than once if you’re sure you’re not pregnant.

Totally sure doc. 

Then it gets jostled again when you’re forced to talk about the future even though the two of you, as a general rule, don’t. Yes, I want to have kids someday. Chemo is bad for a lot of reasons, but when you are told it’ll kill all of your eggs, probably, that’s kind of a heartbreaker.

Talking About Fertility When You’re Trying NOT To Get Pregnant

The Good in Bad News

Today was bad. Not just today, the last 10 days really. When they told me the Humira wasn’t working there was a lot of hope pushed onto Cimzia, so much that I think I may have even managed to placebo effect myself. My primary care doctor was more zealous about the Cimzia than my rheumatologist was, but I was sort of expecting the double injection to do something. Maybe it wouldn’t work for long, maybe it would just buy me a few months, but it would do something, and I could be normal-ish feeling for a while. Right?


It didn’t do anything. In fact, I’ve been sleeping nonstop since injecting last Thursday. I’ve dragged myself out of bed for work, and been pseudo-grateful the guy was out of town, because I’m just that tired. It’s the kind of tired that people who don’t have a chronic illness can’t fully grasp unless they’ve had to work a full day, with the flu, while walking uphill the entire time.

Yes, I’m that tired. 

So today I woke up, and my lip was numb. I thought, “That’s odd,” but I also was so damn tired I didn’t know how I was going to make it to work. My head was throbbing. “That’s odd,” I thought, again, because I hadn’t gotten the bad headaches since before starting Humira. As I sat in my shower, on a bench I bought, because I’ve been too tired to stand during a full shower, I worried I’d be late to work. Then I shoveled a donut in my mouth. Oh, did I not mention I was eating donuts in the shower? Yes. I was eating donuts in the shower. Can’t be late to work if you combine activities you should never combine.

Perhaps, at this point, while eating powdered donuts in the shower, I should have stopped to evaluate the efficacy of my current course of treatment, but I didn’t. I just ate my donuts, and dragged my tired ass to work, where I realized the numbness in my lip was a precursor to pain. I wasn’t just getting an ulcer, I was getting a mouthful of ulcers. And my head didn’t just hurt, it was pressure, because of inflammation. Oh, and I wasn’t just tired, I was exhausted, and dizzy. Full on flare mode engaged.

I called my rheumatologist before I even went to work but she never  called back. My primary was next on my list, and I called him at work. I made an appointment for tomorrow (today now I guess) but left a message explaining my symptoms and that I thought we should probably pump some steroids into me like, ASAP. He agreed because within an hour I had a call back saying I should come in ASAP and get the max dose if I was really flaring the way it sounded like I was.

Like a sign, my boss comes through and announces that it’s slow, and one of us can leave early if we want, before he himself skipped out. My coworker didn’t want me to go because she wanted help closing, so I offered to leave and come back. It would mean $30 out of my pocket to do it, and basically nullify the tips for the night, but if it meant I would stop feeling like death was coming, it would be $30 well spent.

My primary care doctor and the medical student found more oral ulcers than I’d noticed starting to crop up. In fact, they found a few that were already formed. Nice. As I showed them lesions on my legs, one on my hand, and the bumps on my face, along with the bruised legs, I could practically feel the needle full of steroids going into my ass. It’s fine though, I needed it. At that point however, the doctor said something I wasn’t expecting.

I probably wasn’t going to give Cimzia another chance in two weeks. We were going to start blood tests ASAP to clear my for Rituxan. 

Come again now?

I knew that Rituxan was the next step, but I guess denial was a wonderful thing while it lasted, because I thought I had a few more months with my B-cells. Now it might be a few more weeks. I’m contemplating a party, because why not? I’ll have to be a bit of a hermit after the infusions since I won’t have an immune defense left…but that’s kind of the point isn’t it.

The guy pointed out several studies though, in which Rituxan therapy, as shitty as it is in theory, is practically perfection. Diseases go into remission. You don’t have the whole body impact that other chemotherapy type drugs have, because Rituxan only hits B-cells. Sure, you’re wiping them off the planet, but I mean, they’re not really doing their job anyhow…so why bother keeping them around?

Still, I think I’m going to have a party. I like parties where you wouldn’t normally think celebrations would be in order. I fully intended to celebrate the finality of my divorce with a party, but if I’m going to be severely immune compromised, I probably won’t be out doing that.

The logistics worry me. What about work? What about classes? How immune compromised will I be?

Then there is the guy. This person who is casual, but somehow the biggest supporter I’ve got. Who insists he’ll be there with me through the infusion, watching shitty movies, and if if they keep me (as they should) overnight because of my allergic reactions and whatnot, he’ll stay as long as they let him. This wasn’t how I grew up. Getting sick was a bad thing, for everyone, it took time and resources away, so there was this huge stigma attached to it. Get better, or deal, don’t ask for help, and if you’re going to be sick, you better BE sick. Seriously. Don’t waste a parent or doctor’s time with a trip if you weren’t seriously in need.

I get that isn’t how the majority of the world works, but in my family, it was a thing.

So yeah…my shitty b-cells are getting evicted. I’m not sure how I feel other than conflicted. I wish they’d just do their job, but I guess that isn’t in the cards.

The Good in Bad News

Humira Isn’t Working

For a few months now there has been a question as to whether or not my Humira dosage is adequate to keep Behcet’s at bay. I’ve had minor symptoms within 8-10 days of my dose, meaning I’m beginning to flare before I reach day 14, which is my dosing schedule (every two weeks.) My rheumatologist and I had discussed increasing to weekly dosing, but she was concerned because, at that time, my liver function tests were showing some decreased function. Having had a liver that functioned better than average for years, it was scary to find out it was functioning worse than the average liver.

The last six weeks have been hectic, really the last two months. My doctors and I were convinced that the mold had a lot to do with my not feeling well, and to an extent we were correct, I have noticed I’m feeling a lot better when it comes to a lot of things, now that I’ve moved away from that hovel…but I’m still having symptoms. I can eat, but only when I’m at home in case my stomach rebels. My appetite is purely dependent on physical activity. If I do not exert myself, I won’t be hungry, which has meant I’m not gaining weight, and still occasionally find myself losing it. Why? Say I go a few days without over-exerting myself until I get an appetite, I may not be hungry enough to eat the calories needed to maintain weight. I then lose weight. Later I’ll have a few exertion days, and eat, but only enough to account for the calories burned, and sometimes not even enough to account for those calories, meaning I either maintain, or again, lose weight.

Today was the worst, well last night into today. (The 7th into the 8th since I’m writing this after midnight I’ll clarify.) I crashed at “the guy’s” place, and I knew I shouldn’t have stayed over. I needed to grab a medication from him, and when he asked if I could stay I agreed mostly because I knew I wasn’t going to see him for a week or so, and also because I sleep better when I’m curled up next to him. Only this time, I didn’t. I was nauseas, and dizzy, and I knew that I was going to be too anxious to sleep well because I was afraid I might throw up while I was at his place, or have diarrhea, either option being horrific. I also knew he was going to wake me up in the morning because he had to get packed and on the road for a business trip. (I remember thinking, “Why can’t I just sleep in and lock up with the spare key from the front desk like I did the last time?” but I would never actually ask him something like that.)

Worst decision ever.

I woke up because he woke me up, and it was like I was on two worlds most demonic tilt-a-whirl. I know he was trying to tell me he was just trying to wake me up, not that I needed to immediately get up, but my mind couldn’t process it that way. I was in fight or flight mode immediately. I was afraid getting dressed would make me throw up, so I literally threw a sports bra on over my tank top, and a t-shirt over that. The t-shirt I put on inside out and backwards. I needed help with my pants and socks. My right hand failed to function completely. I was struggling, not listening to anything he was saying. I fell several times, and he begged me to take the elevator. I agreed but wanted to take the stairs because I was still afraid I’d throw up. Once outside the fresh air helped a little, but I was still violently dizzy. I was more pale than I’d ever been. I had to stop several times, and almost called 911.

I spent 10:00ish-2:3ish sleeping on my bathroom floor.

I have some sores on my legs, so I know I’m flaring, but my balance issue is freaking me out. I had several seizures last Sunday, one of which was a pretty severe 2 minute long episode. I haven’t been 100% since then, with my right side feeling weak.

Time will tell. I feel like garbage right now 😦 Weak, tired, can’t fall asleep, sore,  nauseas, headache, and major vertigo.


Humira Isn’t Working