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)

The Good in Bad News

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

Wrong.

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

Yes, I’m that tired. 

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

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

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

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

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

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

Come again now?

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

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

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

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

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

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

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

The Good in Bad News

Humira Pen vs. Syringe : Battle of the Burn

Okay, so I’ve been using Humira for almost two years now. (It took me a moment to realize that…how time flies!) In the office the nurse administered the first injection using the syringe, in my thigh, and I pretty much wanted to punch her in the face. I did the second one myself, in my abdomen, and made the mistake of doing it while standing up. By the way, that is a huge mistake. I didn’t anticipate the burn, and tried to push it faster thinking, “the sooner it’s done the sooner it’ll stop hurting,” which is also very wrong. After that I swapped to the auto injector and told myself life with the pen, while still a burning pain, was better than wasting the stuff by accidentally withdrawing the syringe too soon.

Today I realized I was a few days late on my injection (whoops) because my dose schedule had changed due to being sick. I prefer to inject on Sundays, since I sometimes feel a little flushed the day of and day after, and I enjoy my Fridays and Saturdays if I can. Alas, the whole kidney infection fiasco threw off my dosing schedule. I didn’t inject on Tuesday again because, well, why the hell would you inject on a Tuesday?

Anyhow, I open up the package, and was surprised to see two syringes instead of two pens in there. So that’s why the box looked different. I had a new rheumatologist, and I guess maybe she just defaulted to the usual, but I was a bit annoyed. I started seeking out friends who were nurses or going through nursing school, offering Starbuck’s gift cards to anyone who could save me the horror of injecting myself. I have a high pain tolerance, it’s not the burning as much as it is the insatiable urge to STOP hurting yourself. Seriously, if you stick a needle into your abdomen, and it burns, your reaction is to flinch, move your hand, do something. Coaxing your body to just relax while you burn it is kind of a difficult task.

I decide to suck it up. Worst case scenario I waste a little, which is fine because I’m pushing dates to start injecting on Sundays again anyhow. (I think…it all depends. I may be increasing my dosage in which case it doesn’t matter which day as long as the hot flash portion associated with the shots mellows out…which lately it hasn’t been as bad.)

YouTube to the rescue, I watch a girl inject in her abdomen sitting down, and I think, “Why the hell would you even try and inject yourself standing up you moron?!

So I start, and instead of pushing the plunger as fast as I can, I decide to go slowly, and if it burns, to push it slower. To my amazement, the burning is minimal, the waste is minimal, and I don’t want to cry, kick, or scream. If the next injection goes as well as this one did, I could see myself swapping to the syringe over the pen from now on.

My only concern is wasting. With the pen, it’s in there, rarely have I missed. I have gone too deep, or hit a vessel of some sort and ended up with a  giant bruise, but for the most part, it’s accurate. I have this nightmare scenario where I miss with the syringe, and I’ve wasted a good portion of the medication I need to feel normal. I already have two oral ulcers from being a couple days late, I can’t afford to be wasting any of the medication.

As for the ulcers, meh, they’re small in comparison to the usual, and thus far my legs are intact. I think the hard part about Behcet’s is the variety of symptoms you can have.

I’m going to write a second blog today about weight loss, weight gain, and the irony of the entire situation I find myself in, because I think it’s something most people who juggle chronic illnesses and meds for them can relate to. I’d write it now, but some gluten free vegan Pad Thai is calling my name!

Humira Pen vs. Syringe : Battle of the Burn