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.

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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

Edit Undo Redo: EMG and OMG

 

So I had a whole blog typed up, but then fell asleep, because that’s my life lately…do something productive, nearly complete it, fall the asleep. The blog was about how the state of California thinks $200 is acceptable to live off of for me in terms of disability (that doesn’t even cover my trips to the doctor since I can’t drive), and how I hadn’t had a bowel movement in almost a full week. I also started Cell Cept (Mycophenalate), which the doctor had hoped would make me poop because it tends to give people diarrhea. (Oh, yay!) This past week was miserable, for oh-so-many glorious reasons.

First off, I kicked Monday off with an EMG. Since the first round of Rituxan they’ve noticed hyperactive reflexes. Now, I’ve had this issue before, but I didn’t really think anything of it. It was minor, and not a big deal. However, after the Rituxan, it was literally like whatever nerves activate for reflexes, were kicked into overdrive. There was a ton of initial concern after that first dose because I actually couldn’t walk, but it resolved, with just some numbness lingering in some of my fingers and toes. The reflexes stated hyperactive, however.

I’ve had an EMG before, and while it wasn’t a picnic, it wasn’t as painful as I’d read about online, so I wasn’t worried this time. Apparently I was overly optimistic. Before they even got to the part with the needles, I was in agony. The second they located some of the nerves on the inside of my calves, my legs jerked violently, with the right side being more impacted than the left (at least pain wise). The doctor actually had to hold my foot at one point because my leg was kicking itself off of the exam table. Then the needle portion came, and it was unpleasant until he reached one nerve, again, on the inner portion of my calve. My pain tolerance is high, but this was absolutely horrific. I started shouting to take the needle out, and he kept saying it was out, but it felt like it was still in, and the burning went all the way down, around my calve, and into my foot. He actually had to show me the needle to convince me it wasn’t in anymore. When he reached my feet, I tensed up mentally, figuring it would be worse, but I barely felt it, and finally when he activated the nerve to get a little jump out of the foot, it was mild, like the last time I had my EMG.

The doctor told me that the test results were borderline, which is the story of my life, but then he compared them to my prior EMG, and diagnosed mild neuropathy. At this point he doesn’t know what caused it, but I’m having an MRI on Monday. I don’t see the neurologist again until the 6th. I see my rheumatologist on Friday. I was in so much pain Monday, but rallied because I had plans with “the guy,” but he had to drive me the three blocks to his place, because the nerve was still tender for almost 2 days. Even now I’m still in pain, though I’ve noticed a general worsening neuropathy in the last 24-48 hours, which has me slightly concerned.

That’s the problem, they increased my Neurontin, which should in theory make neuropathy better, but I also started Cymbalta (for the depression caused by the Keppra) and then the Cell Cept. The MRI is to check for signs of Neuro-Behcet’s, which can be pretty brutal from what I’ve read (tendency to go after the brainstem) or MS.

Multiple Sclerosis has been on the table for several years, particularly because of intermittent issues with control over my legs. It should have been helped by the drugs I’m taking, though, not made worse. Of course, my body doesn’t always do as its told. My worry is that, because the Behcet’s didn’t go into remission, if I do have MS, it was stirred up by my treatment. You activate the immune system with these infusions, because you’re putting in antibodies. It’s great in theory, but potentially problematic if it doesn’t work. It didn’t work completely which is why I’m on the Cell Cept now. (I’d be on Azathioprine, but that stuff had me wrapped around my toilet with body aches and the chills. I couldn’t drink, or eat, and basically would have needed to be admitted to take it, and that’s not realistic for something you take daily.)

So now I’m on Cell Cept, and the other drugs, which has resulted in me being very sleepy in the mornings. I take my meds, and then fight to stay awake. I’m pretty much only coherent from 7pm-1 or 2am, the rest of the time I feel drunk or stoned, or I’m just flat out sleeping. I’m nauseas, a lot, and when I’m not nauseas I’m not hungry. The Zofran helps, but when it wears off it’s difficult to function. Anything I’ve eaten, I’m digesting slowly.

Today is bad because I actually had a bowel movement…for the first time…in 6 says. I’m so nauseas, and I’ve had more than one because that’s what happens when you literally don’t have ONE in almost a full week.

Depression is a thing. I mean, the medication takes a while to work, and it’s hard to be upbeat when your body feels like it’s abandoning you. I keep telling myself that my worth isn’t determined by one single thing. My illness impacts my life, but it doesn’t have to define me. Still, when you find yourself become a Netflix/Hulu/HBO Go/Amazon Prime aficionado…it’s terrifying. I also get worried because I want to work in a laboratory, badly, how can I do that with neuropathy? From what my doctor said, it shouldn’t be permanent, if it’s caused by the Rituxan, however, it also shouldn’t come and go and be bad like it is right now, if it was the Rituxan.

I just keep wondering where my life is going. It’s easier to tell people I don’t know what I want romantically, because I don’t know what I can give. Marriage isn’t as important to me as finding someone I love, who loves me back, and treats me well. I want someone who gets along with me, who shares my nerdy love, and at least has some similar TV show and movie preferences. I want kids. This is where things start to get complicated, of course. My neurologist quietly reacted to my reminder that I was in the middle of a divorce, and didn’t have kids, with a question about whether I planned on having them. I said not anytime soon, indicated I had an IUD, and assumed the question was relating to the medications I’m taking. His quiet reaction was to suggest I consider my family history, and my own health, because some autoimmune diseases get better during pregnancies and some get worse. You never know, and on top of it, there appears to be a strong level of heredity involved in terms of autoimmune disorders in my family.

Breathe in, breathe out, tell yourself that it doesn’t mean your life is over…

It’s more about wanting a somewhat normal life. As the guy has reminded me, nobody is fully normal, and fully healthy, but I do wish I had something easier to treat. I also wish that I didn’t look like an acne riddled teenager. People keep suggesting acne treatments, and I have to explain that it isn’t acne. Maybe steroid cream would help, but I’ve been to tired and too sick to get to the store and try it.

Having a chronic illness sometimes makes you feel lost. You feel like you are your illness, at least that’s been my experience. I know I’m a human being, but at the same time missing out on life starts to make me feel inhuman. My rheumatologist is thinking about sending me to the hospital affiliated with the medical school here, and it’s almost like I’m a case study at that point. Maybe I am…but I need to remember I am a human being, too.

Just breathe…

Edit Undo Redo: EMG and OMG

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I ended up seeing my rheumatologist sooner than expected, before my lab work was even done, because of some severe pain issues that landed me in the ER. I was livid, to say the least, when the ER doctor suggested that the reason I  was having such bad pain, was that I was stressed. My pain tolerance is very high, so the fact that I was contorting my body into insane positions to try and make myself comfortable for even a few seconds, definitely says a lot. The nurse felt around, and I had some major pain, but the doctor didn’t even bother to do anything other than listen to my lungs.

Now, I know I couldn’t get a CT or an X-Ray (I’ve gotten way too much radiation already this year apparently), but that doesn’t mean that I should just be ignored. Tell me the options. My labs were normal, including urine, which surprised me, because I really felt like my kidney was on fire. I will credit the doctor with at least saying I should follow up with primary care and my rheumatologist ASAP, but that is offset by the rest of the things that went wrong.

Despite telling the nurse that I am very sensitive to pain medications, and really would only need a quarter of what they give someone normally, I was given a massive dose of Dilaudid.Worse? It was coupled with a decent amount of Ativan. All given…IV.

My pain was gone, but I was grateful for the Zofran I’d gotten beforehand, because the room was spinning. I had a few moments where I was okay, but the rest of the time it was absolutely horrific. I knew it was a Saturday, and that the ER was busy, but I’d gone in earlier to try and avoid that. (I’d also suffered through the pain on Friday night hoping it would go away.) After only half an hour or so, the nurse came in to discharge me. I couldn’t walk. I couldn’t remember my address. I was given a little longer, maybe 15 minutes, and then told my only option was to take a blanket to the waiting area and sleep it off out there.

They tried to send an immunocompromised patient…to the waiting room…to sleep…

I dragged myself wobbling out towards the exit, and managed to get into a Lyft. I was nauseated, but made it home, where I spent a long time on the bathroom floor shaking violently and nauseas, with cold sweats and the spins. My friend said it sounded like withdrawal which is ridiculous given it was one dose, but she had a point. It was like my body was displeased with the amount of drugs it was given, and because I metabolize drugs quickly, it was extra displeased with how fast those drugs exited my system

Anyhow, I white knuckled my way through Sunday courtesy of Norco, even spending some time at a pool party. I told myself that the pain was a fluke even though it periodically kicked up from time to time. Then Monday came, that was the day I was seeing my rheumatologist.

The appointment seemed futile. She told me that my kidney pain was odd, but likely not related to Behcet’s as Behcet’s doesn’t impact the kidneys. (Not entirely true, but I wasn’t going to correct her. The rarity is what it is, so I guess I just went with it being highly unlikely. We talked about how I’d been feeling, and that while I had a lot of of the major symptoms under control, the GI bleeding that had returned was obviously concerning. Also worrisome were the skin manifestations. While mild, and short lived, it was an indication that the Rituxan alone wasn’t enough to keep my Behcet’s at bay. My inability to stomach medications was making my treatment complicated. She prescribed Cell Cept (Mycophenalate), which I’m starting Tuesday. I wanted to start it sooner but I just couldn’t risk the stomach issues because I’m starting Ketoconazole tonight, and that is rough on my stomach. I’ve also been prescribed Cymbalta (despite the increased seizure risk) because of the depression caused by ironically my seizure meds. I’ve taken it before without issue, seizure and stomach wise, but my stomach has been a mess lately and I wanted to space out the new drugs.

What she did mention nonchalantly was that a CT scan I’d had several months ago, when I was being treated for suspected kidney stones (blood in urine, potential infection because of white blood cells, but no bacteria). Apparently the radiologist had noted the presence of “medullary sponge kidney,” and left it at that. I’d been told at the time I had some renal calcification, which my primary care doctor had said could mean I had a stone, or I was forming a stone, but it wasn’t a stone itself. Basically he didn’t know, it just looked funny to him. Another doctor said it was totally normal. When I looked up “medullary sponge kidney,” I was floored. Apparently if I do have it, it would potentially explain a lot of my weird urinalysis results, and my recurrent kidney infections, infections I often get without ever having symptoms of bladder infections. It’s why I don’t just umbrella everything into UTI, because for me there is a difference.

The next morning I got up early and the back pain was back was absolutely insane. I go to the bathroom, and try and get back to sleep since I don’t have to be to my primary care doctor’s office for a while, but I can’t get comfortable. I’m convinced I’m not going to make it, that I’ll end up needing to go to the ER, because I’m in that much pain. I popped a nausea pill, unable to take Norco because I planned on going to see my primary care doctor, hang around that part of town for a couple hours, and go straight to my psychiatric medication appointment. Now I’m thinking I’m going to just sleep in the shower.

I got in, and the warm water felt amazing. I tend to sit on the bench I put in my shower, or just sit on the floor of the shower itself because I don’t have the energy to stand when it’s too hot. As I’m sitting on the floor the pain comes back and I can’t do anything but brace myself and kind of yell. (Thankfully the roommate was gone.) Suddenly I needed to pee, which annoyed me since I’d just gone, but I went, and the pain was oh-so-familiar. Of course at the time I wasn’t thinking, “This is what it felt like when I passed that kidney stone a while back.” No, I was thinking, “Make it stop!” For a moment I thought I was going to pass out from holding my breath, but then, the severe pain was gone, leaving an achey trail in its place. I put my hands down and shouted, because something pointy jabbed me in the hand. That was when the realization, “Oh shit kidney stone,” came to me. I tried to find it in the water, but it had already moved towards and then down the drain. To this moment I think about how it felt to get stabbed in the hand by that thing, and the fact it was in my kidney and ureter. 

My doctor was nice, agreed it sounded like I’d passed a stone, and also agreed that the lingering pain could be from the stone, or potentially a second stone. He also stated I’d been through way too much radiation to do imaging studies, and if the stone I passed was small, and I was still urinating and feeling okay, that there wasn’t too much to worry about. We talked about my Behcet’s and he didn’t want to add any labs. I got my steroid injection, by the medical student, who was kind but really sketchy with the needle. Both my doctor and the med student tried to adjust my back. My doctor got it to crack a few times, but I finally had to tell him to stop with the lower back attempts. I was in too much pain, and I really needed to not vomit because I had things to do that day.

The psych appointment was irritating. I’d been mislead at the first appointment by being pawned off on the nurse practitioner, probably because of my insurance. She was nice, so I figured it would work out for therapy, and for med control, a kind of 2-for-1 scenario. Only, I find out, she doesn’t do counseling. She’s strictly meds. Worse for me? She doesn’t want to do Xanax or Klonopin either, despite my insistence that I’ll still need it on an as needed basis. I also remind her that I’ll need to taper off because I’ve been on it for a while. She asks if I really want to keep taking my sleeping medication, if I’m having to add Klonopin to make it work. Um, yes? The reason it isn’t as effective is that I’ve probably gotten use to the dose. I’m actually only a step above the lowest dose, so if anything, I want a higher dosage.

Then it happened, the thing we all dread, but in reverse: she suggested that my depression was a result of being in pain, and attempted to prescribe Lyrica, even though it would mean discontinuing my Neurontin which as worked for a variety of my issues for years.

I’ve had doctors suggest my pain was from my PTSD, or general stress an anxiety, but this was new to me. A reverse situation. Yes, my illness contributes to my depression, but not significantly enough to warrant medicating me, especially if all you’re trying to treat is anxiety and pain! Plus, I’m not in that much pain, minus the kidney stone situation. My daily aches are fine, it’s the nausea that bugs me. We went back and forth for a while, because I was adamant that she understand my pain and health were not the main issue, my Keppra was, and that I needed something for depression and maybe a little anxiety, but that I didn’t need it because of the Behcet’s alone. I ended up with Cymbalta, despite the warning of lowered seizure threshold. I was getting aggravated with her other suggestions, drugs to treat things that she wasn’t being asked to treat, in an attempt to make me feel better overall.

I’m struggling with severe depression that comes and goes because my medication to prevent seizures is changing my brain chemistry. Give me something to counter that, please and thanks.

Now it’s all just a mess for me. I don’t feel well. I’m starting the Mycophenalate on Tuesday. I’d start it sooner but if it does give me diarrhea it’ll ruin some plans I have. I’m just wondering where it all comes together and falls apart I guess. There was talk of research clinics, and while I want that before I consider full chemotherapy, I wonder if there is something weird with my Behcet’s. It’s like a weed that won’t die completely. It’s been dented, but it still continues to be a pest.

We’ll see what the blood work says. The steroid shot immediately cleared up my facial break out, but the fatigue lingers like a plague.

 

 

 

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