My Absence (Processing Bad News)

There is never an easy day when you have a chronic illness, but there are definitely days that are better and days that are worse. I had a glorious year and a half with very few noticeable symptoms. Then things went haywire. The issues were going to be resolved, I thought, following a trip to NYU. I would get news regarding the severity of my Behcet’s, as well as all of the treatment options available to me. Unfortunately the process was a nightmare. I was very weak, and had to take my walker with me. My dad was understandably shocked to see me with a walker, but I could walk without it if the distances were short enough. Of course that put a lot of strain on my muscles, but was worth it to avoid the stares of people around me.

The staff at NYU was amazing, and the doctor was, too. I was a nervous wreck and sent my dad to the waiting room because his own anxiety was playing off of mine. We both wanted good news, but because he has an autoimmune disorder, too, we were prepared for bad news as well. (We just never spoke about that possibility.) The doctor came in, reviewed my notes, and confirmed a few things. Regardless of what neurology says, it would appear that my seizures and neuropathy/ataxia and balance issues are related to Behcet’s. It isn’t Neuro-Behcet’s because I don’t have brain lesions. Instead, I likely have inflammation in and around my nerves. This causes the MS like symptoms I’ve had, and explains why some days are better than others. My non-specific abnormalities found on my endoscopy and colonoscopy are consistent with GI Behcet’s. Bad GI Behcet’s. All of the times the doctors said it almost looked like Crohn’s or colitis? That’s because GI Behcet’s manifests similarly. I had nonspecific inflammation of almost my entire GI tract in several of the scopes, and the patchy gastritis in my stomach indicates inflammation there, as well as prior ulcerations. I also had an ulcer in my rectum that was sent for biopsy, but the biopsy was inconclusive.

We went over my other symptoms, including the recent findings regarding uveitis. I told him that the symptoms of uveitis have happened before, but this was the first time I’d been specifically diagnosed and treated for it. With the number of systems involved, and the way my disease seemed determined to jump from one system to another, it was deemed a severe case of Behcet’s. I knew I had it bad, but I hadn’t really stopped to think about what it would mean for treatment. When you get into systemic involvement like I have, the treatment options become more systemic, too. The severity of the GI involvement places me in a position where oral medications are not that effective.

Two options emerged. The first was to try Remicade infusions, with Cell Cept orally. Even though low doses of Cell Cept had made me nauseas in the past, I hadn’t gotten that nauseated. It was considered a reasonable option. The second option, should this combination fail, was to go to Cytoxan, a chemotherapy drug. Obviously the former option would be preferably, even though the treatment timeline was two years. I left excited, but a bit worried. He had said that I likely had developed antibodies to the TNF blocker antibodies in Humira which is why it hadn’t worked, nor had the Cimzia. I’d likely done the same thing with the Rituxan, though it wasn’t really worth trying to test for the antibodies. The Remicade would work, or it wouldn’t.

On Monday, October 24th I finally met with GI here in California, and they gathered a list of tests they wanted done, including another scope. After that early morning appointment, I went upstairs in the hospital to have my infusion. I was relaxed when they took my vitals, a little hungry, and a really tired. They had difficulty finding a vein, and eventually gave up on saving me from having to go to the lab. They were worried if they kept trying to draw blood they’d lose the vein. I took two Tylenol, and a Benadryl, which was protocol, and settled into my comfy chair. The guy sharing the room took control of the TV and put the news on.

Things didn’t go as planned. Towards the end of the first half an hour I realized I felt funny. At first I thought maybe I was just dizzy from not eating, but I realized my heart felt kind of fluttery, and I had some aching that was radiating from the left to the right side of my chest. I had similar symptoms during my Rituxan infusions, but had never said anything except once, and they had just dialed back the rate. (It had been pretty far into the infusion, and on my second visit.) I told the nurse that I felt a little funny, and when she checked my vitals, she immediately stopped the infusion. My heart rate had gone from the high 70’s low 80’s, to 48 beats per minute. My blood pressure had also begun to drop, though not significantly. They called my doctor, and turned up the rate of my fluids. Eventually the aching when I took a deep breath stopped, but the fluttering came and went. My vitals were erratic. They’d check my heart rate and I’d be n the 70’s, but then 15 minutes later I’d be back into the 40’s. The vein blew, and the fluids started to infiltrate. One nurse said it was normal to have some pain at the IV site, but I knew it had blown because I saw the swelling. I was stupid and didn’t hit the call button, I just waited for my nurse to return.

IV fluids were discontinued, obviously, as soon as she realized the IV had blown. My doctor wanted me in the ER for an EKG immediately. I was wheeled down to the ER, bypassed the people waiting, and squared away in record time. The EKG was interesting because I’d had one just a few days before. Both had heart rates in the 70’s, but the one following my infusion showed that the elements of the EKG (essentially the process of the heart beating) were slower. I was still in sinus rhythm, but the findings were classic for an infusion reaction. For the next few hours I was monitored, and my heart kept up the annoying habit of randomly dropping into the 40’s and feeling like a butterfly. When it would go back up it would feel like I had just run a mile, but only for a few seconds. Eventually I was released, and defeated, I went home.

I knew that this was bad. With infusion reactions they usually discontinue the IV, treat the reaction, and begin again, at least that’s how it was in the Rituxan clinic. There was no talk of me continuing the Remicade, and as far as I can guess, I won’t be. They also refused to put me on Cell Cept, which the NYU specialist had said was critical for remission. My doctors here in California were never really on board with the Remicade/Cell Cept plan, because they felt Cytoxan was the best option for my constellation of symptoms. Knowing this, and knowing how fast my reaction came on, and that I’m not a good candidate for more steroids, I really only see one way forward treatment wise…chemotherapy. (The day following the infusion reaction I broke out in an itchy rash, and felt miserable, and that was with just half an hour of medication. It was clear that the drug and I did not get along.)

When I got back from NYU, my hair had begun falling out more and more. It was common following steroid tapers, and I was told that the Behcet’s likely was playing a role. Inflammation throughout my body, including my scalp, meant brittle hair, and hair just falling out in waves. I saw my hair stylist and had her cut off the sad ends of my hair, losing about six inches. I cried as I realized I couldn’t make a bun or ponytail with the remnants, which barely touched my shoulders. I had blue put in to cheer me up, and remind me that I was fighting for Behcet’s, a rare disorder, and something I refused to take me out.

Now, as I wait for November 2nd, when I will find out officially my next course of action, I have good days and bad days. I was asked at my first appointment after NYU, if I had a plan in place to freeze my eggs. The thought of it crushed me. My insurance didn’t cover it, and I didn’t have the money. Even if I sold my car and used what was left from my Go Fund Me, I would be short. There was no guarantee that I’d lose all of my eggs, but the risk is high. Before this my biggest worry was going bald, suddenly I didn’t care that I’d need wigs. I cared that I may never have children.

Moments like this make you see life with a clarity you wish you didn’t have. I’m seeing someone, it’s casual, but it works. We make each other happy, and that’s really all that matters. That being said, being happy has shown me what I do want in life. I want someone to come home to, someone to cuddle up with and watch shows. Someone who appreciates my introverted nature and isn’t judgmental of me for it. The problem is, I still want what I’ve always wanted, before my ex, before my current guy, before I was really dating. I always knew that I wanted to be a mother someday. I was, and am, terrified of letting my child down, but I know that the love I have to give would be enough to prevent failure.

Will I lose that dream? The rest of what I want from life has changed over the years. I’ve adapted so much of my life because of my illness. Trading my dreams of veterinary school, for laboratory sciences. Now I’m hoping for remission because I don’t always have the dexterity for that. I would love to be a physician’s assistant, but again, I would need to be able to be around sick people, so that is pretty much out, too. The lab work, I love it, and I’m hoping it’ll come back together for me. Driving, I miss that, I miss being able to blast music and head to the beach to clear my head. I never thought I would be in debt, but here I sit. As my divorce goes through, I wonder about marriage. I used to think it was necessary, for religious purposes, and because it was the next logical step. Now it’s less important to me. I wouldn’t push someone to get married, but I would get married if they wanted to. I’ve come to realize that what is put down on paper, legally, is less important in a relationship than the way you treat someone.

I do want someone, though. The guy I’m seeing, we have this weird thing going. It’s more than friends with benefits, but less than officially dating. It works for us, and that’s all that matters, but I constantly worry I’m holding him back. We really are best friends, but in terms of what we both want in life, we’re both still figuring it out. The small romantic part of my brain sometimes hopes that he’ll want me, but the rational part of me realizes I don’t bring a lot to the table. I’m a good person, with a kind heart, and a loyal friend, but as a partner in life, I don’t really have a lot going for me. Anyone who wants children? They’d automatically be undateable because I couldn’t give them a key component of what they were looking for in life.

The frustrating part is that is being taken from me, too.

I’m hoping my doctors will talk to my insurance and that something can be done to preserve my fertility. For a while I thought maybe I’d refuse treatment. My quality of life right now sucks, majorly, but I couldn’t handle a childless future. Then my flare decided to remind me why I was fighting. My stomach ulcers bled, the dizziness and nausea kicked into overdrive, and the Behcet’s headaches came back with a vengeance. Any ideas I had about giving up, were washed away.

One afternoon, after a bungled appointment (which is why I don’t find out until the 2nd what the game plan is), I couldn’t go home. I wandered around for almost an hour, then took a Lyft to the beach. I sobbed, watching the waves crash in, and the families on vacation enjoy the water. The guy (as he’s known since we don’t have titles haha), tried cheering me up when he found out I was blue. Eventually I went home, but only because I was cold. I tried to pull it together but then I had a nervous break down. I’m doing that in a separate blog.

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My Absence (Processing Bad News)

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