The Terrifying World of Trying to be Normal

Warning: This post may trigger those with a history of trauma. Please see tags. Nothing happened to me in terms of any violence, sexual or otherwise, however the topics included could be triggering. Thank you.

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So I was in a funk, which isn’t abnormal when you’re digging into a contentious divorce, navigating pseudo-singledom, and battling a chronic illness. After a depressing Friday night, literally spent crying in my closet until “the guy” came over to cuddle with me, I was determined to make Saturday fun. I was supposed to start my new job Monday, after missing my original start date, twice, and the roommate was starting his new position, too.  I went out, bought two sexy dresses (well one outfit was a separate top and skirt combo), and then took a final. We met up with neighbors, and I invited the guy, but knew he was burnt out from having spent the night out with friends the prior evening.

As I walked out in the sexy two part combination, the roommate and a few of the friends we just met reminded me that I was *technically* single, and entitled to have a little fun. I wasn’t going to kiss anyone, I knew that, but I was encouraged to at least dance and maybe get a number or two. I didn’t have to do anything with them, it was more the knowledge that I had options. The first bar was fine, low key, and I found myself comfortable with the group of friends I’d been thrust into. Not drinking always makes bar hopping odd, but it was okay. I don’t remember much of the second bar.The third bar was more of a dance club, something the women in the group were majorly insistent upon doing.

I stood awkwardly with our group. My roommate had given me input on the girls he would usually go after, not having a specific type, but more broadly sort of into athletic girls. He did say he was kind of looking for something edgier, given that he’s not into dating right now, but he kept it vague. Then he started asking me about my type. Eventually I inadvertently locked eyes with a guy in plaid, that was my type, tall, dark hair, you know how it goes. The roommate approved, as did a few of the ladies in our group, but I didn’t think anything of it. When I looked back, the guy locked eyes with me again.

Now is when things get fuzzy. His friend introduced us, and we began dancing. It wasn’t clean dancing by any means, but I kept repositioning his hands off of my ass. I told myself I wasn’t doing anything wrong. This is dancing, dirty or not, and in any event, the guy and I haven’t set boundaries regarding exclusivity etc. I want to, he doesn’t, so things are in limbo. The dark haired trouble maker tried to buy me a drink but I told him I didn’t drink. I kept trying to steer him from dancing to conversation, and eventually he said something to his friend, then said we should get water.

I downed half a glass, before setting it down. I think a song I liked came on, I don’t remember. The guy was sort of perturbed that I hadn’t finished the water. He kept saying he knew the bartenders, all of them. I can remember his hands down the back of my skirt, and me pushing him away. I remember him snapping my thong, and being annoyed. He kept lifting me up and I would fight him on it. My head was spinning, I was nauseas. He wanted me to drink more water but I said no. I asked our group if we were leaving soon, but they said, “No.” Time felt squished, but it also felt like we were supposed to leave. At some point we exchanged numbers. He kept changing his story about where he lived. He tried to get me to leave my group and go with him, as did his wingman. The las solid memory I have is basically begging the group to leave. That’s when I was told we were staying a little longer because it was almost last call. The lights came on, blinding me, but I was already headed for the door.

I don’t remember the walk home, but I do remember being in the guest area of our apartment complex. Everyone was a drunk, eating, playing pool, watching TV, and I was just confused. I smoked a little pot, trying to ease my stomach, but that only made the intense spinning worse. I took the dog out, and at some point took a bath that I don’t remember.

On Sunday I woke up at 1pm, with what felt like the worst hangover I’ve had in a long time. I didn’t throw up, but the urge was strong. Every noise, every light, was like a thousand angry bees stinging my brain. I swallowed my seizure medication, and crawled to the couch, forcing myself to eat an apple sauce. The roommate, who’d gotten less sleep, and actually been drunk, was pretty much okay. A little tired, but functional. I started texting the guy, things I wouldn’t usually say, about exclusivity and why did it bother him. The truth is I want it, but I understand that he’s scared by it, so I’m okay with how things are until it’s something I can’t tolerate. I forced my angry body to go for a walk, but every step was like quicksand.

When I got home I told my roommate something was wrong. By now it was probably around 2 or 3. Time begins to get fuzzy again. I told him I thought someone had drugged me. It didn’t make sense for me to be this sick the day after going out when I’d slept like a rock, and hadn’t eaten or drunk anything that would have made me feel so miserable. He asked if I needed to go to urgent care, but I said I was okay, then the partial seizures started. After a couple I decided to show the roommate what they looked like, but they were getting more severe. I gave into the reality that I at least needed to go to urgent care.

By the time we got to urgent care I’d deteriorated into wheelchair status. At check in I explained I was having partial seizures, but then things get a little fuzzy. I think they must have taken me straight back. My first clear memory is waking up surrounded by doctors, nurses, and crash cart/resuscitation equipment. There were questions, but I don’t know if I answered. The next memory I have is getting some medication and being transferred to a gurney by the EMT’s. I managed to mumble out the name of my preferred hospital.

The EMT told me I’d had 2-3 seizures, at least one that they’d witnessed. He also said it sounded like I’d been drugged the night before. I just wanted to sleep. My roommate met me at the ER, but his dislike for blood had me sending him away pretty fast. I remembered how awful I’d been to the guy, and realized that I hadn’t texted him back which made me look angry when I wasn’t. I told the roommate to tell the guy I was in the ER, but fine, and that I wasn’t ignoring his texts.

After the roommate left I got a text from the guy saying to text ASAP. My right hand still wasn’t fully functional so I scratched something out about it being hard to text, but that I’d be okay. He was already packing a bag and on his way. The next thing I know I was waking up briefly. My head was hanging uncomfortably when I’d fallen asleep, but now it was resting peacefully on a soft arm that smelled familiar. I think I mumbled something before drifting back off to sleep.

The doctors couldn’t prove that I’d been drugged, most of the drugs used are in and out of your system in a matter of hours, even though the effects linger. The nurse told me they see cases of it daily. The guy as ready to track down whoever it was and bash him, but I just wanted to forget it even happened. For me it wasn’t a knew experience, only this time I was saved by a stomach that knew I was getting more than water and revolted.

It’s made me realize something bizarre: sometimes being normal isn’t all it’s cracked up to be. I felt healthy. I looked healthy. I attracted male attention. All hell broke lose. Then my body, being abnormal, reacted excessively to the situation. However, my overly sensitive GI system, and inability to drink alcohol, likely saved me from a more severe drugging. Had I not gotten nauseas and dizzy, I would have finished that water, an while my group had my back, they also wanted me to have fun. If I looked like I was having fun, my roommate later admitted he would have let me leave with the shady guy. It’s a terrifying thought. We’ve since agreed we need a hand signal to get me out of situations I’m not comfortable in, and I’ve made it clear that I like “the guy,” enough to be exclusive, even if we aren’t committed to being exclusive. I am who I am, and I am in what I am in.

There have been people who doubt I was drugged because I seemed to be acting fine after we left the bar, but I honestly don’t remember the walk home at all. The fact I went into status epilepticus the next day, despite taking my meds is also a good sign something was majorly off.

So I’m off work again today, because apparently the doctors at the ER felt I needed two days off not just one. Luckily work understands. I’m in pain from the apparent violent sternal rub. I don’t think CPR was used or I would probably have some sore ribs, too, though I did aspirate some spit, and my one side of my chest is sore. (Then again post seizures I’m always sore, and apparently these were pretty violent ones.)

Life is what it is.

Recovery mode like a beast, with my amazing service dog by my side. Apparently while I was still in the ER being evaluated, my pup was following the roommate around like nuts. Roommate took him out, but the dog wasn’t having it. I had to explain he knew something as wrong. The second I got home, he bolted for me, and hasn’t left my side since ❤

The Terrifying World of Trying to be Normal

Dying From the Inside Out: What You Don’t Know About Mold Could Kill You

So I mentioned several weeks ago that I found out my mattress was moldy. Not just moldy…it was absolutely covered with mold. In my mind the issue was more than just a moldy mattress. I knew there was black mold/mildew all around the windows of my apartment duplex. At first I thought the black splotches that covered the concrete stairway to my apartment, and my neighbor’s, couldn’t be mold, or mildew. After all, the concrete wasn’t porous, was it? As bits and pieces of the concrete stairway chipped way, however, I realized there was more than enough ground for mold and mildew to gain a foothold.

I spent Friday the 11th and Saturday the 12th at “the guy’s” apartment. It wasn’t planned. I’d spent the night at his place the weekend prior, taking care of him, and noticed that I felt better than I had in weeks. Over the week things got worse and worse. My stomach was in knots. I couldn’t eat. I couldn’t sleep. I felt weak. On Friday night I was starting to feel seizure-like. As I mulled over whether I was going to go to the ER or not for my stomach pain, the guy was texting me. He invited me over, and I told him I really wasn’t feeling well, he wanted to take care of me, and I was too sick to refuse the help. I didn’t want to go to the ER and be sent home, so I was hoping a night away from mold, and someone to make sure I didn’t seize, or if I did could keep an eye on me until it was over.

Friday he cuddled me while he played a game I enjoy watching him play. Silly I know. Saturday he had to get up and take care of a few things. To my surprise he told me he wanted me to stay and sleep in. I’ve never been in his apartment without him, but I was too sick to really care. I wanted to sleep…so I did…until 3pm! I sent the guy a quick text when I woke up, saying I slept longer than I planned to, and that I would get my stuff together to get out of his hair. He asked if I was feeling better, and I told him I was feeling better. He asked if I was back to 100%, and I told him no, but I was getting there. Surprising me again, he told me that I should stay, take a shower or bath, relax, and just wait for him to get back home. He wanted to see me. When he saw that I was a lot better, but not 100%, he asked if I could stay another night. I told him I could, so I did. By Sunday I felt significantly better.

Random fact: despite drinking a ton of water Tuesday-Friday, I’d only urinated once or twice, and both times it had been extremely dark and thick. By the time I left Sunday, I was urinating more often. It wasn’t a lot of urine, but it was normal colored at least.

On Sunday the 13th and Monday the 14th, I went and looked at apartments with a roommate I found online. Seems insane, I know, but the guy and I clicked. We have similar educational background, and career paths, and the same snarky sense of humor. I’ve always gotten along with male friends easier than female friends. I’ve lived with male roommates and female roommates. The male roommates have tended to be less of a hinderance. I’ve lived with some great women, but the drama can be extreme…and don’t even get me started on the hair. Hair literally everywhere.

Anyhow, I knew I needed to move, ASAP, so when we stumbled on my dream complex Sunday, I was hopeful. We still ran all over on Monday, despite my insistence that we weren’t going to find something nicer, in our price range, that met his specific wish list. After several strikes on Monday, we revisited the complex I fell in love with, and we signed a lease that day. My roommate had a hotel to stay at, but I was insistent on getting out of my apartment. Spending Sunday night there had left me with insanely swollen lymph nodes. I couldn’t swallow without gagging.

The guy surprised me again. He offered to help me get my bed put together at the new place so I didn’t have to spend the night in my moldy apartment again. I hadn’t intended on spending the night at my old apartment. If I couldn’t manhandled my mattress into my SUV, I’d get a hotel. I felt bad because he thought he only had to build the bed…he didn’t realize we had to actually move the mattress (new one) and my bed (still in the box at least) from the mold den, to my new place.

We got the bed and the mattress into the new apartment, but we were both exhausted by the process. Facing laundry if I wanted to sleep at my new place, I was relieved when the guy suggested we crash at his place. Downside? It was pushing midnight, and he had a 6:30am flight the next morning. I am so not a morning person.

Yet another shocker. The guy stops by the front desk when we get to his apartment complex, and announces that he needs to grab the spare key. Seeing my look of confusion, he tells me that he figured I’d want to sleep in the next morning. He’s not sure if he’s going to push his flight to later or not, but he wanted to make sure I could leave whenever I woke up, and lock up behind me. After a ton of reassuring him that I would return his spare key.

I hadn’t intended on going back to the moldy apartment except to quickly pack some essentials. I figured I would need to hire movers, and cleaners, because there was no way I could do a lot of packing, and I definitely couldn’t do any cleaning of the place given my symptoms. I had doctor’s appointment on Wednesday to discuss my weight loss, loss of appetite, and in general miserable feeling. I told him about the mold, and showed him photos, at which point he got very serious. He asked if I was living in the complex anymore, and I said that I wasn’t. I asked if my Behcet’s could have been triggered by mold or mildew, even though I wasn’t allergic, but he stopped me right there.

Due to the Behcet’s, and the notoriously unreliable skin testing I went through to begin with, none of my allergy results were really valid. The allergists at the Naval clinic had struggled to read my results, because I appeared to react to everything. That’s because my Behcet’s was overreacting to the insult of the needle insertion, and the irritants. It would have been difficult, if not impossible, to sort out a true allergy from an overreaction from an immune system on high alert against all terrorists, foreign and domestic. Plus all people are in some sense, allergic to mold. We’re not really supposed to be around it, breathing it, ingesting it (save for a few save variations of course), and because of this anyone with an impaired immune system, like myself, is taking a risk with any exposure…never mind repeat exposure.

My bouts with asthma over the last few months, weight loss, and of course the bronchitis that seemed inflammatory instead of infectious, all made sense. He told me that I was not only allergic to mold and mildew, but that I was likely VERY allergic. If I was going to go back into that apartment, for any reason, I should wear a mask, and make it quick.

I stopped at the pharmacy, got some masks like the ones used by people when they sand, and went from my appointment to my apartment. I loaded up clothes, just the bare essentials, or so I told myself, but quickly need up grabbing a few shelves and some other odds and ends. After 45 minutes I was itchy, exhausted, and miserable. My glands began to swell again, and my stomach was in knots. I realized I hadn’t had a bowel movement since sometime on Sunday, and my urine output was low again, too. I couldn’t give the doctor a sample at all on Wednesday, despite being sent home with a cup.

Thursday I was suppose to start my new job, but I’d been up late the night before with severe abdominal pain and  chills. I realized the symptoms of a bowel impaction or obstruction because I’d dealt with them before. When laxatives failed to resolve the issue by the following morning, I called out reluctantly, dropped the dog off at doggy daycare, and went to the ER via Lyft. I was feeling as though passing out, seizing, or both, were valid options at that point. I tried to be optimistic. I was going in for constipation, and nausea. How bad could it possible be? I still hadn’t peed. I’d gone all day Wednesday without urinating, or even having the urge to urinate. That was what had scared me more. When I’d been obstructed before, I had the urge to urinate, but couldn’t because of the constipation.

I learned a few things at the ER. First, I learned that you should be more persistent when you’re checking in, and feel like you’re going to have a seizure. I kept telling myself that maybe it was anxiety, because the partial seizure auras are hard to tell apart from regular not feeling well. Dizziness, rapid heart rate, and nausea, all fit my abdominal pain and constipation issue. When my right side went numb as I sat in the chair, I knew I was in trouble, but the lovely thing about my partial seizures, is they knock out some important things on the left side of my brain. Being right handed, this is problematic. It also causes speech issues. I sat there feeling like I was having a stroke, and hoping that it would stay limited to a partial seizure. I knew logically, based on the length of the partials, and the fact that I was having them clustered, that it wasn’t going to get better, but I tried to remain hopeful. I could still talk, I just couldn’t really shout or get anyone’s attention.

A phlebotomist came to get me and draw my blood. I told her I was having a partial seizure and I needed help moving. She got me into a wheelchair, but didn’t seem to grasp the gravity of the situation. There wasn’t a ton of coordination with the nurse who checked me in, and the phlebotomists who drew my blood. The first phlebotomist did get a second, because I told the first that I was going to have a seizure. The thing about my partials, when they generalize, is that I don’t really have a wide vocabulary. Sometimes I can only muster, “It bad.” This time, however, I apparently stated, quite coherently, that I was going to have a seizure. Not sure they realized I meant I was immediately going to have one, but I mean hey, at least I warned them. Apparently I clenched and went into a full tonic clonic so hard and fast the phlebotomist couldn’t even get the needle out of my arm. Luckily it only lasted about 30 seconds, but afterwards the disorientation lingered. It was more than just a post-ictal fog. I was lapsing in and out of partials.

This is a dangerous time for me. I haven’t been triaged. All they know is I’m there for stomach pain and constipation, and now I’ve gone full shake-rattle-and-roll in their triage area before I can be triaged. Luckily they have my medical records, but with my complicated history it’s a lot to dig through. The initial assumption was that I was on drugs. The drugs made me constipated, and dropped my seizure threshold. Surprise assholes, I hadn’t even used my medical Marijuana recently, even though I knew it was the one thing I could count on relieving a lot of my symptoms.

Things after that settled down. I got Ativan, and realized that, while the curtains were moving occasionally, they were not billowing in the wind, and the ceiling, though it did have different levels, was not caving in towards the middle. I also felt less like vomiting, but that was a combination of Zofran and not being stuck in a partial/permanent aura. The doctor was going to do an enema but I sobbed. I’d done one on myself that morning, which only left me with more pain, and no relief. I knew they’d need to manually take care of things, but I couldn’t handle an enema, or manual removal of the blockage, without more sedatives. Sad reality: they’d given me Ativan to stop the seizure, so they couldn’t give me more sedatives for a procedure they didn’t usually sedate for. Instead I got industrial grade laxatives, and a shot that apparently kick starts peristalsis.

Fun fact: post-ictal me can sleep through all of that. I should haven’t been running the bathroom, but I barely noticed the cramping. Sure, I felt some burning where the medication was hitting the blockage, and maybe it was breaking it up, but I didn’t have the urge to run the bathroom like they expected. I did give them urine. One positive of post-ictal me? I always have to pee, even when my kidneys have been being dicks.

I left the ER with modified instructions that basically amounted to a colonoscopy prep. The guy happened to be getting back in town from a trip that night, and wanted to help take care of me after finding out I was in the ER and had seized. I insisted that he stay home, despite his concerns. I promised I would call or text if I needed help, and pointed out that I did now live in walking distance. (An odd subject, but in this instance at least it worked.) I also knew he was tired from a week spent dealing with vendors and potential clients, so I used that information to avoid having him witness (via all kinds of senses) what was happening in my lovely new apartment.

Friday night I did invite him over, and he came over, and despite not being 100%, we still had some fun. He was surprised yet again by my ability to bounce back from illness, and I told him it takes unfortunate practice. There is an art in being sick, and being sick. He laughed because he’d had a follow up with his doctor and his doctor had asked if he had any partners, and if his partners were well. Apparently he’d been honest, and said he did have a partner, and that while I definitely wasn’t well, I wasn’t contagiously unwell. Then he asked to watch me inject my Humira which was a bit odd for a variety of reasons. First off, I do it in my stomach, and I’ve lost a lot of weight, so I have to do this weird sit/lean forward thing to pinch some skin and aim for a subcutaneous vs. intramuscular injection route. The other thing, was having someone ask to watch me do that.

It wasn’t bad, in fact, once I got over the oddness of someone watching me inject, I appreciate him that much more for it. Yes, I refer to him as “the guy,” but that’s because that’s what we are. It’s funny because we’re so much more, without being more. Whether this turns into something that goes somewhere, or fizzles and ends with an amazing friendship, we’re both better people for having met one another. He’s had some horrible experiences with women, as I have with men, and whatever we’re doing, it works. Do I wish we could at least firm up some boundaries in terms of whether or not we’re going to stay exclusive until one of us has an issue with it? Yes, very much so, but just like he respects the fact I can’t control having an illness, I respect that the issue gives him anxiety. Not because he doesn’t want me, or because I’m not enough, but because there are a million ways it could play out, and not all of them are good.

Random interpersonal relationship tangent, but it sort of ties in I suppose.

The thing with being sick, and life changes, is that sometimes you forget how sick you are, until you’re dealing with the changes and you’re forced to slow down and change at the pace your body allows. When my old roommate wasn’t getting sick in the moldy apartment, I just assumed the issue was me and my reaction to the mold and mildew. It never occurred to me that the level of mold present could make even healthy people feel unwell. The cleaners found mold in nooks and crannies I hadn’t even thought about. With meeting the new roommate, it was interesting to have to explain to him why we needed to get so many things done on Tuesday. Yes, I had Wednesday free, minus a doctor’s appointment, but I was feeling okay on Tuesday. I couldn’t be sure that I’d feel okay Wednesday, and if I pushed too hard Wednesday, I’d be unable to work Thursday. (This is what ended up happening anyhow!)

Part of what makes things work with the guy, is that I’m introverted, and also not 100% healthy. I’m not saying he needs to be with a sick girl, I’m just saying being sick, I understand things other women may not. I’m also less needy. I don’t need date nights weekly to feel important. I’m okay, and often prefer, to stay in and play games and watch movies. When we go out, I don’t mind avoiding restaurants, because most of the time I can’t eat anyhow. The complicated things about me, fit with his personality in a way that has complicated prior relationships he’s had. Yes, I do wish we went out more, especially when I have a night when I’m feeling less like I’m on the verge of death, but in my mind he needs to be the one making the moves. Since I’m always at the mercy of my immune system’s moves, I’m okay with it.

Life is what it is, and people try so hard to manipulate themselves, and others, so they can get the things they want, or think they want, but at the end of the day what we truly can control is very small compared to the things which we can’t. Those of us who are also faced with the challenge of a chronic illness, struggle with the fact we can’t even control our own bodies most of the time. I can’t make plans with any certainty, and while nobody can guarantee they won’t get sick and miss an event, my likelihood is of course higher.

As for mold?

Mold is bad. Don’t live with mold. If you see it growing around windows, or in areas of your home, get it checked out. What you can’t see are the spores in the air. If someone you care about is showing symptoms of a mysterious illness, but seems to get better on vacations, or after a few nights away, seriously consider whether mold in their home or apartment is potentially to blame.

 

Dying From the Inside Out: What You Don’t Know About Mold Could Kill You

When Meds Fail

It’s hard not to get depressed. To crawl in bed and mutter, “I’m sick,” and just lay there. Why? Because I am sick. I do feel awful. The fatigue is driving me insane, and the nausea and abdominal pain has reached a fever pitch. The issue is miscommunication between treating physicians. doctors who think they know what I need. What will work. What will make things worse. The balancing act, complicated by my PTSD, has reached pushed me to a breaking point. Nothing works, and what does work, only seems to work a little bit. Worse? If it works at all, it requires another medication to mitigate the side effects.

A few years back I was put on a medication to help me sleep. At the time I was annoyed because I’d gained 4o pounds. I didn’t think I was eating more, but it was all so long ago, I couldn’t remember. With my appetite at 0, and my weight plummeting, I figured it was worth trying the medication again. If it could help me sleep, decrease nausea, and allow me to eat again, maybe it would be okay. Instead it was a nightmare.

I didn’t sleep unless I mixed it with the sleeping medication my (horrible)  NP was trying to wean me off of. Worse? It increased my appetite, but did nothing for the nausea and pain associated with eating. The result was an urge to eat a normal amount, despite having  a digestive system that simply couldn’t handle it. The nausea and pain didn’t subside, and eventually I had to stop taking the medication. Within two days my usual severe nausea was back, along with a disgust for all foods. This morning I choked down a bagel and some cereal, but I’ve been immobile ever since.

It feels like I’m digestive razor blades. While I was on the medication, I was passing a good amount of blood with my stools, which makes me think I’ve got ulcerations in my GI system. I refuse to be scoped again. The whole thing is an odd vicious circle, with no apparently clear answer for how to fix the problem.

So today isn’t a bad day. It isn’t that I’m giving up, I’m just struggling to function on a basic level. I need to make it to a night class, and make up a lecture for an online class. I’m supposed to see the guy this weekend (or beginning of the week, I’m hoping he isn’t back in town yet) and I want to feel better than this.

Sometimes it’s hard to deal wit hate reality that your body is attacking itself. The masochist little bastard that is my immune system ruins who I feel like I really am…sometimes.

When Meds Fail