Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.

Then There Was Cancer (Maybe)

Breaking Down

The last few days have been miserable, and the misery continues. I’ve manage to stay positive through most of this recent flare, but things have hit a point where I lost the ability to smile my way through the pain. Currently I can feel every joint in my body, or at least that’s how it feels. I’ve take to googling, “is there a joint in your <fill in the blank>” because I’ll have such intense pain at a random location, that I’m not sure what else it could be. Fun fact, you can get joint pain in your collar bone.

This weekend was a big outdoor music/art festival that I was really hoping to attend. I knew that, unless I was in remission following the Rituxan, I wouldn’t be able to do all three days, nor would I really want to be outside for all three days, but today was the big day. I was really excited about the idea of seeing the Chainsmokers, and then there were a bunch of other bands that also piqued my interest. So, as the flare dragged on, and the symptoms worsened, I’d let go of the dream. It didn’t mean I wasn’t upset by the reality of missing out, it just meant I was prepared.

Until friends started posting photos online yesterday of day one, and I started to really think about how things were going. I’m back to the walker, and even with the walker, I can’t go very far before my body simply gives up. My face is covered in lesions, and people keep saying it’s acne from the steroids but it isn’t, it’s the Behcet’s. My leg has ulcerations, too, and they’re large and painful. The fatigue is horrific, but because of the pain, I’m not sleeping well, so it’s this constant battle between exhaustion and an inability to give into the need for sleep.

I want to be positive. I want to tell myself that the trip to the NYU clinic is just around the corner, and that as soon as I go there will be at treatment plan, and a road to recovery, but on days like today, I can’t even process the hopeful portions of the situation. My friend was shocked today when I told her via FB messenger that I was ready fore chemotherapy. One of the big reasons I pushed so hard for NYU was so that I could avoid chemotherapy and try a novel treatment plan that would spare me the six months, and side effects. Today the pain is so bad, six months of chemotherapy hardly seems like a sacrifice.

When you’re chronically ill, you find yourself missing out on a lot. Strangely, you don’t really think too much about it, at least after a while. Your reality is your reality, and what you can and can’t do isn’t something you choose. I’d love to do what my friends do, but I also know I can’t, so I just go about doing what I can do, and enjoying the moments I get. Still, you have those moments, when you’re confronted with the loss of normalcy in really unexpected ways. I have just over two weeks until I’m expected to makeup a class, or receive an F grade, and I don’t know how I’m going to pull it off. I can’t really move, let alone complete laboratory assignments with any kind of precision right now. Add in not being able to work, so I can’t afford the $100 a week to get to and from classes, and that this is four months straight of on campus coursework…yeah…you see where I’m going with this.

Getting the service dog would be a huge help, but at the end of the day, I’m still very sick right now. The amount of pain I’m in, along with the limited mobility, and visual impairments, is suddenly unavoidable. Previously I had joint pain and fatigue, and the occasional ulceration, but most of my symptoms related to my stomach. I still have stomach issues, and definitely have ulcers brewing internally right now, but those things are sort of simple to hide from people. Yes, I lost weight, and people noticed, but they accepted my excuses, and we went about our lives.

Now? Sometimes it feels like everyone has their lives moving forward, and I’ve stalled. I don’t expect anyone to wait around with me while I sort through the train wreck of mechanical failure that is my own body, but I also worry that, by the time I’m back on the road, I’ll be miles behind everyone else, and worse, miles behind where I want to be. Will I ever find someone who loves me, and wants to be with me, despite the reality that this type of situation could crop up again? Even with chemotherapy there is a chance I have a bad flare, and need more chemotherapy, or some other serious treatment.

It’s hard explaining to people who view “remission” as permanent. It can be, and if it is, you’re lucky, but with my constellation of symptoms, I will always be on maintenance medications. Always. I don’t say it to be negative, I say it because it’s the truth. Even in the absence of symptoms, when they can reduce the drugs I’m taking, they will have me on something to prevent symptom recurrence, especially given the severity of symptoms I’ve had. It isn’t like cancer, where remission really can mean it’s gone forever, and you just keep an eye on things to make sure it doesn’t come back. With an autoimmune disease, your immune system is permanently fucked. Even if it decides to play nice for a while, it’s not friends with you, and it only takes a stressful event, or illness, to trigger it’s overreactive anger.

I want to be working in a full-time position, doing what I love. I want to finish my degree. I want to apply to an internship program and get my advanced licensure. I want to be at concerts, and vacations, and weekend getaways, with friends, and new friends. I want to be out downtown, dancing, in heels and a dress. I want to go out to eat, and actually eat what I want, without fear. I want to sleep through the night. I want to keep my apartment at a reasonable temperature.

Instead I’m looking into filing for full disability. The internship program is impossible, requiring a full 40-hour per week commitment, which I can’t do health wise or financially at this moment. Concerts, vacations and weekend getaways are also unobtainable due to my health and finances. I can go out, on occasion, but I can’t dress up right now. I can only wear flats, and in a dress the ulcerations on my legs make me uncomfortable. Let’s not even talk about the horror show that is my face. Eating at a restaurant is a statistical nightmare. Assuming I can get plain white rice, all I can do is take one or two bites, because the GI ulcerations are going to throw a fit the second they’re touched by anything traversing my GI tract. I haven’t slept straight through a night in longer than I can remember. I’m woken up constantly by cold sweats and pain. The heating pads, and to flashes, mean our apartment is unreasonably cold.

I live in this box, where I smile and give a thumbs up, but desperately want to climb out of the box and just live life. I want my smile and thumbs up to be me doing the things that I want to do, instead of relishing in the joy of the things I can do. It doesn’t mean I’m not grateful for what I can do, it’s just that finding the joy in the things you’re able to do isn’t always gratifying.

Then there is the pain. The severe and horrible pain. Pain that I haven’t dealt with before, that I swear is threatening to swallow me whole. Shooting from my neck, down each vertebrae of my back, like hot little exploding fire balls. Pain in joints I didn’t know existed, and joints popping so loud I swear the neighbors can hear them. Pain that makes me need to be held, when I’m not that girl. I’m not the girl who asks a guy to come over because she’s falling to pieces over her physical state, or mental one. I’m the girl who pulls her shit together and deals with her own crap.

I texted the guy because I’m in that much pain. He’s actually going to the festival today. The day I was dying to go. I burst into tears, not because I was mad at him, I’m actually really happy he was able to make it. I cried because I wanted to be there. It would have been nice to go with him, but I just wanted to go in general. It was like this pile of emotions, neediness which I hate, and jealousy, which I may hate just a little more. Again, I’m happy for him, but it’s hard not to despise my current situation.

You might be a spoonie if you’ve run out of things to watch on Netflix, Hulu, Amazon Prime, and a plethora of other streaming sites…so you order the industrial antenna because why the hell not try and pirate as many channels as possible so you can watch live TV? Especially if that means football?

I want my life back. I want a life back. The quality I have right now is poor, and I’m not asking to run marathons, or jump into some insane routine that involves 60+ hour work weeks. I simply want to live like my peers. I want to enjoy things again

Breaking Down

When Your Nerves Make You Nervous

I have two rheumatology appointments this week, which I’m thrilled about. My old rheumatologist is seeing me tomorrow, and I need to ask her about some lovely lesions in a not so lovely place. Then the following day I see my new rheumatologist who will hopefully be just a *little* nicer to me this time around. He’s the same asshole who wrote “probably” Behcet’s instead of the reality that I have Behcet’s, on my paperwork. (Lovely man.)

Anyhow, I can walk without my walker, but not for long distances. I need to get a can or some other assistive device, but it just feels so aggravating. I find myself pushing myself, then dealing with the numbness and tingling from pushing myself. Of course that leads to the weakness, which leads to me not moving, which leads to a vicious cycle of lather, rinse, and repeat. I know I have ulcers in my intestines, because I’ve given into drinking the lovely sucralfate suspension. It tastes horrific, but the wonderful numbing power isn’t really something to be belittled. It’s kind of scary not realizing how much abdominal pain I have, until I don’t have it, and then realizing that normal people feel like that all of the time.

My appetite is back now that my steroid dose is lower, but then again, so are the ulcers, eye issues, and oh so lovely neurological problems. The Behcet’s headache is real, and it’s nasty. I wake up in the morning with the shakes, and the night sweats are vicious. You spend days wondering if it’s the medication, or the disease, before you realize it’s all basically irrelevant. On top of it I’m poor, so I had to eat what was in the house today. That ended up being a cucumber and vinegar salad, a favorite, but not when you’re mouth is raw. Oops.

The neurological issues have me irritated because I feel like they’re Behcet’s related, but I can’t get the doctors to agree because my MRI’s are, “mostly” normal. Nobody has elaborated on what that means, but from what I’ve gathered there isn’t evidence of Behcet’s in there. I’m not totally shocked given that 90% of my symptoms are peripheral. The seizures are obviously a concern, but with the gallery divided over the cause of that, I guess I’m in a holding pattern. The increased dose, along with rest, seems to be keeping things under control, but I’m also still taking a decent dose of steroids and having skin symptoms. As my steroid dose drops, the skin symptoms increase.

Rheumatologist #2, that I despise, tried to chalk my skin up to steroids, but then the steroids cleared my skin, and he was forced to eat his words. Now he’s back to the same old line, despite me showing old photos of the same rash, which again, cleared at that point with a few steroid injections and steroid topical creams. He won’t talk about neurological involvement, and neurology won’t talk about rheumatology treatments, even though rheumatology’s treatment, 3 days of 1 gram IV steroids, cleared up 90% of all my symptoms…neurological symptoms included.

I guess I’m just terrified of showing up to my appointment in NYC, and having the doctor agree with my current doctors, and not have options in terms of treatment. The reality of having neurological involvement, but no MRI abnormalities, is somewhat terrifying. My right side, particularly the leg, has betrayed me. I also have nystagmus, which honestly, makes no sense, given that I’ve never had it before. I actually did an in depth test years ago that ruled it out as a cause of my vertigo when they were testing for inner ear diseases. The fact that it would show up now, in the midst of all the other Behcet’s symptoms, makes me feel like it’s a sign something isn’t going properly in my brain.

When you’re chronically ill, you get intuitions. It’s even more tuned in when you have multiple chronic conditions. I know I have PTSD, and I can tell you when my heart is racing because I’m anxious, or if something weird is going on with my body. I can tell you when my fatigue is because I’m depressed, or if I am legitimately fatigued from my Behcet’s. I’ve learned to sort out what symptoms go where, because they genuinely feel different. Doctors tend to think patients with mental disorders can’t sort to the mental disorder related symptoms, from the disorders stemming from other conditions. Maybe it’s true, sometimes, but not in situations like this, and not in someone like me.

I need NYU to work out because I desperately need a doctor in my corner who can say to other doctors, “Shut up, listen to the patient, and listen to me.” He’s the expert, and it’s like, if he has my back, the other doctors will have to fall in line. It’s a one time visit, to develop a treatment protocol, and there is a lot riding on it. I’m totally ready to go to the movement disorder clinic here at UCSD, once they find an opening, but I think it’s a bit ridiculous to exclude Behcet’s when every other possibility has been worked up. Why are we searching for something else when I meet criteria, minus the MRI? Why are doctors in the ER calling my seizures psychological, when my inpatient neurology team needed to call a code because my heart started throwing extra beats, and I wasn’t breathing adequately?

In a world where ER doctors are overworked, and chronic illness patients are forced through ER doctors to be admitted, it becomes a cluster of chaos. I’m hopeful that having hospital affiliated doctors will allow me to be direct admitted in the future, should I flare and my doctors decide I’m better off in an inpatient setting, but in the meantime I’m stuck in a place where I don’t know where to go or who to see regarding various symptoms. I have all these specialists to see, and all this paperwork to file, and I pretend like I have it all under control, but really I just want to curl into a ball and pretend like I have the flu. Pretend like this is just something that impacts me for a few weeks, and then I’ll be fine.

School is another stressor, which sucks because I love school. I won’t know until November if the service dog I’ve applied for will be up for placement, and it could be even longer before he’s placed. There are interviews, etc., to take into account, though the trainer seems to be really happy with the idea of me as his companion. The issue is he may have a kidney condition, but he also may not, so it’s, again, totally dependent on the test results, and what they decide when it comes to placement. I have to take a class in October, or I get an F, because I took an incomplete back in April before I started the infusion process. November, December and January are also on campus laboratory courses which, in theory, are doable, if I can find a reliable ride program, and if I have assistance with a dog. This isn’t so true if I’m doing chemotherapy, depending on how I’m feeling during the chemotherapy. There’s a part of me that wants to power through, regardless, and another part of me that recognizes I’d be having chemotherapy during cold and flu season, then going to a college campus.

It’s such an odd place because I haven’t been offered any other treatment options. Long term steroid use isn’t really effective, or safe, and the doses required to control my symptoms are simply too high. The only real way to dent this, at this point, seems to be to wipe out my immune system, and the only way to do that is with some aggressive chemotherapy.

I find myself justifying symptoms I shouldn’t justify. The insane amount of antacids? Well I am eating more. Slipping and falling? I was sitting too long. Bloody bowel movements? It happens sometimes! Then I see my face, covered in ulcerations, and my legs, and my hands, and now my arms, and I realize, that I’m flaring. that my head hurts. That my eyes are straining. That my exhaustion is beyond any normal level of exhaustion. The numbness and tingling, and lack of coordination, it’s not okay, and it’s not something I can  just chalk up to lingering effects of neuropathy, even if it is improving, because it has happened before, and it will happen again.

The MRI was normal, but what happens when it isn’t? What happens when this painful cycle of recurrent flares leaves me someplace random, with legs that don’t work? In the meantime how do we explain the hyperactive reflexes and the nystagmus? Why are we ignoring so many symptoms simply because the main box, the MRI, was checked off as normal?

Something is wrong. Something in my body is not okay. I need someone to hear me, to help me, to believe me, more than I need anything else.

Sidenote: my inhaler and I have been BFF’s lately, which is absurd given the amount of steroids I’m on. Inflammation for every body part I guess?

When Your Nerves Make You Nervous

Scared, Sick, Tired

Being home from the hospital initially felt amazing. I was buzzed off IV Prednisone, and glad to sleep in my own bed. Or at least try. I woke up Saturday feeling generally like crap. A friend came over later that day to hang out with me, and I went to do foot reflexology. It helped a bit, but soon I was bak to misery. Solid foods and I weren’t getting along.

On Sunday I managed, after another night of fitful sleep, to eat half of a small baked potato. I slept better, thanks to some crafty snuggling by the guy that apple heat to a sore hip, and the pressure I needed to stop the pain, but it was only for 3-4 hours. After that I was up every hour. It seems like I’ve been made of urine since starting this Prednisone, despite not drinking nearly enough to compensate for the loss.

On Monday I woke up with a skull crushing headache, convinced I was dying. I tried to call the Behcet’s Clinic in New York, but it was a round around game due to the fact they’re not accepting new patients. Apparently if my rheumatologist confines them to take me they will, and my rheumatologist is convinced they will, but for me it’s a difficult blow. I also found out that I have to handle the cost of the flight, boarding, everything. I’m hoping family in the area can lend their apartments, however sparse the space, but I’m admitted for testing and my insurance doesn’t cover it, that means raising more money.

I’ve started a Go Fund me, but I try and keep things private on here. I also know a lot of us are on here with similar struggles. In any event, if you’d like to message me and request the link I’d happily share it, I just don’t want this blog to have an actual face on it because it’s more about dealing with chronic illness, while trying to keep my privacy since it is public.

Monday was an up and down day. I spaced out the Prednisone so I could eat some bland gluten free pizza, but I only ate half of what I’d usually consume. Then I was up with abdominal pain, and now it’s Tuesday and I’m up with more abdominal pain. Chills, shakes, nausea, headache, check all the boxes, I’m in steroid induced hell. I did more foot reflexology yesterday, but it wasn’t as helpful. I was relaxed enough to eat, but the numbness, tingling, and weakness, have returned with a vengeance.

Today I see the eye doctor, and I’m not dreading it, I’m just annoyed the appointment is so early in the morning, and that I’m awake even earlier than I need to be. The second issue is that I need rheumatology, and I see them tomorrow, but I don’t know if I can go another day without IV fluids or treatment of some kind.

I feel the disease testing me know, all the issues I’ve had before, coming at once, an then this neurological plague. The fog is probably from the prednisone, but I keep wondering if it’s going to get worse, or better. I walk with a walker and wonder who would ever want to take me out? Will I ever go out to a club again? I see myself in the mirror, when my eye aren’t blurry, and I see someone who is too thin, and getting thinner, and I lament the stretch marks from the steroids and the weight loss with a sickening sigh. People say we all have scars, but when you’re still trying to win the battle it’s hard to wear theme.

My life, for the most part, is something I take as it comes. We don’t get to choose what happens to us, just how we handle it. I try not to be negative but sometimes it’s hard not to sink to a depressed place. For the first time in a long time, I’m truly scared. I can’t walk unassisted. I can’t use dangerous items like my stove. I have assistive devices scattered over the apartment, and people on call to stay with me when my roommate is gone because I shouldn’t be alone. I lean on “the guy” way too much, though he does offer, and I just don’t want to weigh him down with all the negativity I simply can’t control.

Being sick is one thing, being sick publicly is another. We all get tired of, “but you don’t look sick,” when we’re exhausted and turning down invites or leaving an event early, but having people notice your deterioration, can be even more jolting. I went from okay, to using a walker in 10 days. Most people didn’t see me wobbling before the hospital, and nobody in the complex saw me in the hospital. Showing up thinner, in a walker, definitely made an impact.

Now it’s just a battle of, “What it…” and though it’s a game I don’t want to play, the reality is that it’s a game I’m forced to consider from time to time.

Scared, Sick, Tired

8 Days Later – the Hospital Stay

On the 15th I had an MRI appointment. I woke up that day with wobbly legs and figured it was good my neurological symptoms were acting up. Maybe this would explain to my doctors what was happening with my body. I knew I was walking weird, and the heat wasn’t helping things. By the time I got to the hospital they had decided it would be better to wheel me to the MRI than have me walk. Afterwards I was sent to the ER by my neurologist, and sent home without an explanation. I was given a walker (with no wheels), which just felt like a convenient way to break teeth. A friend drove me home.

On the 16th things got worse. My arms were impacted and my hands felt like someone was mashing on my funny bone. By the end of the day I called the neurologist’s office, and the nurse said to return to the ER, and have them call the doctor’s personal line. I obtained a ride, somehow made it into and out of the car. I was in agony. The ER didn’t do anything. The doctor did a basic exam, notice I had out of control tremors, no muscle control, an when he did get a hold of my doctor decided to send me home anyhow with instructions to follow up on Thursday (two days later) since I already had an appointment.

My roommate picked me up and had to load me onto a luggage cart to get me up to our apartment. A friend came over and helped me undress and shower. I spent Wednesday in bed, surrounded by food and drinks. I let the dog out on the porch twice, falling hard once while I did it. In typical Behcet’s fashion I felt like I was dying without a reason. You get anxiety, like maybe this is permanent, maybe this is the lesion that ends your ability to walk, or see, or do something you’ve come to take for granted.

On Wednesday night my friend (the guy) came over and was pretty much ready to take me to the ER that moment. I insisted we stick with seeing my neurologist the next day because I refused to go to another ER and be sent home to to wait for the impending appointment. By this point I couldn’t open anything but my thumb and pointer finger. My core was starting to twitch with the responsibility of holding up the rest of a body that refused to coordinate itself. I would lay calmly for long enough and the tremors would stop, but I would feel tingly and floaty. The second someone asked med to move, or moved me, the shaking and tensing would begin again. The neurologist immediately seemed to be out of his league and shocked at the extensiveness of the movements. He told me initially we could try a medication used for Parkinson’s but that he wasn’t sure it would work. by this point I’d been constantly moving for 3 days. I broke down, the sobbing started which made the shaking worse. I couldn’t feed myself. I couldn’t walk. He told me the medicine would make me vomit, which made me wonder how I would handle the task of sleeping around the toilet that night.

I was sent to UCSD ER immediately.

The first ER doctor I saw wasn’t too big on the whole admitting me for sure process. He said that of course my doctor wanted me to be admitted but it was up to their neurology team to decide. The hospital was full, with some patients waiting in ER beds for 54+ hours just to get a hospital bed. I didn’t care. I was done. My body hurt. I wanted someone to fix it or stop it. My friend (the guy) stayed with me until neurology 100% said I wasn’t going home. I may have to spend the night in the room in the ER, but I wasn’t leaving the hospital until I’d been fully worked up. Another friend came by with my original MRI even though the hospital planned on doing a repeat exam as soon as possible.

They moved me that night to another ER room with a hospital bed, and a TV. Medications were adjusted, but in the morning it was clear that had only made things worse. I woke up with my jaw locked. A team of neurologists came in, and so began the process of becoming a science experiment.

When you have a rare condition, you attract attention, and it’s not good attention, at least it doesn’t feel that way. While I was pleased to have teams of doctors working on my case, it started to become dehumanizing. Tests, family history, lather rinse repeat. The following evening I had a hospital bed, and a relaxed jaw. My body was still useless.

My roommate was an amazing woman, who trained service dogs. I told her I didn’t mind if she was up early watching TV, or up late watching TV, that at home I had the TV on a lot and it didn’t bother me. We chatted, eventually peeling back the curtain. My MRI was for Saturday morning (I think). Her dogs were coming to visit, and I was beyond excited. Then things got dicey. I had to receive all of these drugs for my MRI so I was up most of the night thanks to the steroids. The Xanax/Benadryl cocktail did make me sleepy, but I still needed to be restrained for the MRI because my movements were periodically uncontrollable. Even asleep, the noise from the MRI would startle me, and cause the jerking to begin again.

Things got bad. I woke up and they injected the dye, and I felt my stomach drop. I assumed it was just from being on my back so long, and the IV injection. Once back in the tube, I realized it was an aura. I was going to have a seizure. In an MRI tube. Restrained. I focused on breathing, I just needed to stay calm and squeeze the emergency release ball. Only my hand was locked, and I couldn’t. The last thing I remember thinking was I hope the padding is enough to protect me as I let go of the ball.

The rest was told to me by my friend Amy, and others who were around. I apparently took the technician about a minute to notice the small movements were getting larger. When the took me out, I was in full seizure, strapped on my back, choking on saliva. They unlocked parts of my restraints, got me to a hospital gurney, and called a code blue. My heart rate was erratic, my oxygen saturation was okay, with oxygen and suction, but I did not, in general, look good. I guess that is kind of inferred by the code blue.

For some reason they’ll start working on you in a hallway, but they take you back to your room to process the code. They pulled my friend Amy out, and closed the curtain. They charged the defibrillator, and were arguing over whether I needed to be intubated. Amy was screaming, having heard the code blue call through the hospital when I was in MRI, and so she just knew it was me. She was shouting at nurses asking if I was okay, but they wouldn’t her in. She said all she had seen was my limp white body on the gurney, with white foam all around my mouth.

I was lucky. The massive doses of seizure drugs stopped the seriously long seizure that had nearly stopped my heart, and my breathing. When I woke up, for some reason the only thing I could think of was the dogs. I kept saying dog, and the kept thinking was confused. MK, my roommate let them know I wasn’t nuts, that she had service dogs with her, and I kept saying dog. Rocky, the sweet lab I’d been interested in, came over, and they were the first eyes I saw after coding. The concern in his face for me, a human he’d never met, struck me to the core. He rested his head on the gurney and I drifted off to sleep.

They moved me to a private room, one step below ICU. I got to visit the next day with Rocky’s brother dog, who was with a sweet man and his wife. My friend Amy, pushed to her breaking point, had verbally assaulted my friend (the guy) into coming to the hospital because she needed a break. She couldn’t stop seeing me the way she’d seen me, so dead.

Lumbar punctures. Blood draws. Eye exams. Another MRI. Two more seizures, one major, one minor. Medication adjustments. Three days of hard IV steroids, and finally I was discharged.

Officially? Probably Behcet’s, but they can’t prove how or why. I do have seizures. The doctor told me the pseudo seizure or anxiety/conversion disorder diagnoses that had been previously suggested, were absolute garbage. Everyone who witnessed me seize, and the description of the partial seizures, was enough for him to realize this was actually happening pathologically, and not emotionally. Nobody knew why I had nystagmus when I was admitted, but it was gone by the time the steroids and eye drops had begun.

The eye doctor found anterior uveitis, which explained the sudden blurred vision. This means a month of eye dilating drops when my eyes are already dilated, and steroids drops for at least a week. He said conclusively it was Behcet’s related, completing any other questions doctors had regarding the validity of my diagnosis.

I’m lucky I had friends to visit, to keep me grounded. I lost count of needle sticks. The blood thinning injections, blood sugar checks because of my high doses of steroids, insulin to adjust my levels, and of course blood draws, and IV replacements. There was talk of placing a PICC line, or other venous catheter because it was becoming increasingly difficult.

Now I’m adjusting to a new life. Waiting to see if I get to the clinic at NYU. Waiting to call Monday to set up my follow up appointments. Accepting I need the walker to get around, and that I am very weak. Desperately trying to raise funds to cover the expenses I’ve been left with since dis ability has been screwed up, and not all my medical care was covered. I also really feel like Rocky is the service dog meant to be with me. The way he looked at me with such concern, I just felt an instant bond. I know I’d be lucky with any of her dogs, but Rocky and I had this connection like we wanted to care for each other.

I made a Go Fund Me, but I worry nobody will contribute. I keep staring at my walker, at my life, and hoping things improve, but knowing that until I get to NYU I won’t know the significance of all of it. I know blood work is coming, lots of it, and that through it all  won’t have income. It’s scary, and terrifying, but it’s my life, and I have to accept it for what it is.

Bruised. Battered. Wobbly. But not Broken.

8 Days Later – the Hospital Stay

The Non-Believers, I’m Not Your Doctor, and Disability Misconceptions

I have Behcet’s. Seriously. I have it. You can doubt it. You can tell me it’s rare. You can suggest we retest for lupus markers over and over, and maybe someday I’ll have lupus, too…but that won’t mean I don’t have Behcet’s. I tend to rejoice when I see the same doctor in an ER, or when a new specialist is excited to see me because they rarely get Behcet’s patients. When someone looks at me with the, “sure you do,” facial expression, and starts to lecture me on rarity, I can already feel the needle stick of the impending blood work.

What makes it worse, is that it took seven years for me to get a diagnosis. During that time the cocktail of drugs thrown my way was endless. Even now there is always a shuffle. What to take for PTSD, that doesn’t impact the seizures, which may or may not (I’m leaning towards may) be related to my Behcet’s and all the drugs that I take for that. When you’re chronically ill, you become sort of an expert at things like, titrating your steroid dosages, and which over-the-counter drugs work best for a variety of ailments. You also know when something is ER worthy, urgent care worthy, or can wait for a visit to a regular physician.

When I say, “I’m not your doctor,” I’m joking. Truth is I don’t mind telling you what you should take for that cold, or why your child’s rash is something to worry over. If I have to live with feeling like crap a majority of the time, and catching bugs on a pretty regular basis, the least I could do is share the information I get from those experiences. I recently helped a friend with some steroid dosing, because Medrol dose packs are great, if you need a whole dose pack. If you don’t, then you’re going to experience all the fun side effects for no reason. You can do a slower titration of the meds by just taking them like you would a 4mg pill, instead of following the dose pack instructions.

I am in no way condoning the people reading this blog to disregard your dose pack instructions. If your doctor gave you a dose pack, and told you to take it per the instructions, follow the instructions. I am on a specialized protocol with dose packs, I take two, one in reverse order, then one in normal order, because I can’t handle the packs the way they’re prescribed. I follow my doctor’s advice. PERIOD.

That disclaimer out of the way, let’s be real, people self medicate. They have meds laying around, and they wonder, “would this help or hurt,” and I’m often the one they turn to.

As for life…stress is destroying me, but I’m taking it a day at a time. I can’t do anything but push forward, take my meds, and be thankful the current flare I’m experiencing is mild. It’s my fault, I was a few days late with injecting because I changed injection date and forgot, and I’ve been stressed which doesn’t help.

File for disability already.

My soon-to-be ex-husband likes to constantly push me to file for disability, because he thinks this will somehow magically fix my income issues. Even if I qualified, the low amount I’d get wouldn’t help as much as actually working does, which is the point. I can work. Yes, I had a rough few months, I had a kidney infection, followed by bronchitis, followed by knee surgery, and another kidney infection. This set of flare,s which set of seizures, and all in all it was a messy fall/early winter.

He thinks if I can get disability, his alimony will be lower…but that’s not how this works (cue the commercial “that’s not how any of this works”). Getting disability is hard, and it’s also something that I firmly believe should be reserved for people who really need it. I am not going to slow the process down for others, when I’m capable of working part-time. Right now I’m lucky, I work from home, and I do most of my school work from home. Hopefully I can get on a new med protocol, and stay healthy.

Just stay healthy…easier said than done, but it’s going to be one of the mantras for 2016.

The Non-Believers, I’m Not Your Doctor, and Disability Misconceptions