Steroids and Azathioprine (Imuran)

Ugh. That about sums up how I’m feeling about the current situation I find myself in. I have a mouth sore starting and it’s making me mad. The leg and face ulcers really shouldn’t have made me shocked to find my oral ulcers coming back to haunt me, but I guess I kept hoping it was all just my Behcet’s putting up a fight. Then the headache came this morning.

When I woke up, it was there, just like it has been, in the back of my head, with some added fun this time. My words didn’t make the most sense, and I was slurring my speech. Granted I’d only  gotten about 5.5 hours of sleep, and was de-caffeinated, I was still aware that I should be making more sense. I just shrugged it off. This is my brain on Behcet’s. Regardless of how my MRI’s have been in the past, and if my new MRI’s show no change, my brain goes rogue.

Today I got to see my primary care doctor and get some more Medrol injected (happy dance), which is going to allow me to skip the oral dose (shhhh don’t tell on me) tomorrow and the next day, while I’m out of town. Listen, I like the guy, and he does not need to smell methylprednisolone farts or worse, poops. Plus, I’d like to enjoy my mini vacation without constant gas and the fear of needing to urgently poop.

My rheumatologist was less thrilled with my, “let’s just throw steroids at me,” approach to handling the wait for the Rituxan to work. Testing me sometime in July seemed appropriate, but as time passes, and my symptoms worsen, even with periodic shots of steroids, I get her concern. Still, I know my treatment options from here on out, and they’re bleak as hell. Without even phoning in the blood test to rule out the gene for a rare type of genetic predisposition towards a weird kind of anemia, she phoned in Azathioprine (Imuran). Now, I’m not starting it on my trip, despite my primary care doctor’s suggestions I get it going, for a few reasons.

  1. I don’t want to throw up or have diarrhea, both potential side effects, and ones I always seem to get when I start new oral medications.
  2. I don’t want to end up in an ER out of town, without my medical records, ruining our trip.
  3. We’re finally going out of town, I am not starting a new really shitty drug on literally DAY ONE of that trip.
  4. Who tells their patient to drive 2+ hours away and then start a drug like Azathioprine when they haven’t been tested for the genetic mutation you’re supposed to check for prior to administration?

Right. Okay. We all agree? No Aza for me until I return. Then I’ll take it and throw up and go to the ER, and we can get onto the difficult task of the next step.

I thought we were talking about Cellcept, but it turns out we were talking about Cytoxan…in doses that would mean I’d lose my hair, probably throw up a lot, and also likely end up infertile, or nearly infertile. Yay! Sign me up. My insurance won’t cover egg harvesting, or freezing, not that my soon-to-be-ex-husband is going to rush to help figure out how to get it covered seeing as, you know, he’s about to my official ex…

Positives are I can totally dye my hair blue because it’s going to fall out anyhow…negatives include being bald. The guy dates the sick chick with the patience of a saint, but let’s be realistic…I’d need wigs, good wigs, because I don’t feel like being 30, single, and bald, is going to do wonders for me, especially when you consider I’ll have a port in my chest, too.

Oh, did I leave that part out?

I have shit veins, so they always go hands, but because of the nature of the drug, and frequency of delivery, I’d get a port if I wanted to stay at the center I was going to…because it’s more time efficient. Yeah, let’s just put a port in because I have difficult veins! For fucks sake can we try a little?

Mostly I don’t know how to tell the guy that this is the situation as it stands. He was so positive about the Rituxan, and I was, too. I still am, but I really don’t want to start the Azathioprine. He’s looked up a bunch of drugs, and options, and has even said I should go to NYU to seek out other treatment options because I have the gene mutation and maybe that bumps me up some research list. He’s so helpful, and wants so badly to be able to help me find a way to treat and achieve remission, it’s hard to explain to him that getting there may involve a lot of hard sacrifices.

He isn’t my boyfriend. We’re talking about harsh drugs. Potential hair loss. Body changes have already happened, and he’s been supportive, but these are even more drastic. At what point do I get friend-zoned? At what point does my illness become too much of a part of my life to warrant keeping me in too much of his life? Why must I be single and sick, when dealing with either is enough of a bother as it is?

My life has been turmoil filled from the moment I was born. Literally, I died during my birth for a bit, my heart sort of stopped, then started again…Nothing came easy, and I fought hard to just survive. To care for siblings, hell, to raise them, when I was a child myself. I weathered abuse, as a child and an adult. I fought, and I lived, but now I’m facing the prospect of having to lay back and recover. To be alive, but not really living my life. That’s why I’m taking a trip tomorrow, to see a show tape live. It’s why I am staying as long as I feel well up in LA so I can knock some things off my bucket list that are there. That’s why I’d like to try and get to San Francisco before the Aza kicks my ass, or I’m forced to start seriously considering Cytoxan.

Breathing in and out and smiling and joking, it comes easily, because it’s not always real. inside I’m screaming, crying, wanting to be held and told it’s all going to be okay, even if I don’t believe it. That’s the thing people need to understand that’s often odd about someone chronically ill. Sometime we will lash out when someone says it’ll all be okay, because it won’t, it really won’t. It will be okay some days, and other days it won’t be, but it will never all be okay. Still, on days when we get the worst news, sometimes we just need to be held, to cry, to scream, to ask why without getting an answer because there are no answers, and to be told that no matter what it will be okay. Not all of it, but some of it, and that’s all we really need.

Steroids and Azathioprine (Imuran)

Shots, Shots, Shots, Shots (LMFAO…the band, not actually laughing, anyone?)

So much has happened, and so little has happened, that it was hard to sit down and write anything at all about it. On one hand I know I won’t know for sure until the middle of July whether or not the Rituxan has done anything, but I know in my gut that it hasn’t. I don’t feel better, if anything, I’ve had more symptoms lately, minus the mouth sores. There’s a raging debate between my rheumatologist and neurologist (who keeps leaving the country due to his father’s illness then death) regarding whether my symptoms are Behcet’s related or not. They can go ahead and debate, I know my body, and I have a hard time believing, or accepting that I have something else going on in addition to the Behcet’s, that isn’t related to the Behcet’s. (What I mean is I doubt I have MS or ALS on top of Behcet’s, unless I’m captain of the bad luck train.)

Anyhow, I’ve had great days, and I’ve had days where I’m convinced I maybe one of the few people who die from the disease. It’s not melodramatic either. I have been so ill that I’ve thought, “Okay, well, it’s in my brain, and it’s killing me.” I have made plans to hit items on my bucket list, not because I think I’m dying for sure, but because my quality of life waxes and wanes, and I don’t want my moments of happiness to be dictate by spontaneity on good days. If I could still drive that would be easy enough, but without a license it’s hard to get up and drive a few hours away to go to Disney or whatever.

In a pathetic attempt to function I’ve decided to pursue pushing my doctors to give me steroid injections. I got one on Thursday, and felt GREAT…until last night, then today I was officially done. I’m taking methylprednisolone orally, but the dose is only 4mg, enough to give me wicked GI issues, but not enough to do anything positive for me. Yay.

My face is covered in itchy bumps, some ulcerate, some don’t, and the first steroid injection took away most of them, but then they came back yesterday. I’m going to LA on Wednesday to see a live show, with the guy, and I keep looking in the mirror wondering why anyone would want to be seen with me. My self-esteem is shot, and the high dosages of seizure drugs don’t help with the depression.

I have leg ulcers, too. Not too many, but a new one seems to crop up daily, sometimes a few show up, and I keep thinking this is it, the start of the recurrence. Sometimes I try and take a hopeful stance, the Behcet’s is just fighting against the monoclonal antibodies. In the end, nobody really knows.

The neurological symptoms came back yesterday. The headache was mild, till the nighttime. This morning it was miserable. I’ve looked into POTS (postural orthostatic tachycardia syndrome) and I fit the criteria to an almost perfect level. I don’t have issues with my blood pressure, but the rate issues are a constant aggravation. My headaches are positional as well. It wasn’t until 1:00pm that I could move from sitting to standing without having to immediately give up and sit back down, and it was hard to even get from lying down to sitting up when I first woke up. I’m dizzy, I’m having trouble keeping one eye open, and I’m even somewhat confused. The oddest symptom has been not always blinking in unison.You have no clue what it’s like to have one eye blink, and the other blink slightly later. It seems like it wouldn’t be that big of a deal, but it is bizarre and off putting. Trust me.

What’s bleeding?

  • Something in the lower GI, from the pain I’m thinking: colon, rectum, and (oh joy but most definitely) the anus
  • Something in my urinary tract
  • I have my period but it’s not like my period so it’s either coming from my bladder or my uterus decided to get in on the fun
  • Gums

So yeah, that’s all fun. I guess you could toss the brushing under bleeding but that’s a steroid side effect according to my PCM, so I suppose we should just stick in the corner, force it to play with itself.

Oh, and the fatigue. PLEASE lets not forget the horrible fatigue. The desire to sleep all day everyday, anywhere, and yet somehow I never can nap…

So nothing is better or worse, though maybe slightly worse because of the GI side effects from the steroids, and the whole, “My legs aren’t working,” thing. I have smoked a bit more pot lately to compensate for the nausea. Some doctors like to say that’s the reason I’m neurological symptoms. As if smoking enough pot so that you’re not still losing weight at an alarming rate is to blame for symptoms you’ve had longer than you’ve been in the weed game.

Shots, Shots, Shots, Shots (LMFAO…the band, not actually laughing, anyone?)

Life Happens While You’re Not

My first infusion was okay, minus the lingering issue regarding whether Rituxan caused both peripheral neuropathy, and hyper-reflexia, or if I was already hyper-reflexive prior to the infusion, but nobody realized it because nobody had checked my reflexes in a while. The joy.

Tonight I’m recovering from round two. Considering this time last round I was in the middle of hospital admission for not being able to walk courtesy of the neuropathy and reflex issues, I guess this infusion went better. I’m really tired this time, with more lower GI pain and issues, but I went into it with those issues, so it’s not a huge surprise. What is throwing me for a loop is the depression. I knew I’d be limited due to the fatigue, and flu like symptoms, but I wasn’t expecting to feel like I was actually missing out on life. I took the time off of work, I’ve been working on filing for disability, and planning little things I can do that don’t put me into too much contact with other people until I know for sure where my immune system is at function wise. All of this, plus the guy is out of town a lot, so I should feel fine. I should feel like I’ve got all the time in the world to focus on me, and getting better.

But I can’t. I’m stuck in this pit of depression where I feel like an illness instead of a human being. Even when I’m not invited to an event, or couldn’t attend it had I been invited, I end up feeling like I wasn’t worthy anyhow. Why would anyone watt to be around someone sick like me? Love someone sick like me? My ex’s words haunt me just like my dad’s statement years ago that he was better off alone because of his health.

I say I’m positive, that I laugh through the infusion and crack jokes because that’s the best way to handle a stressful situation…but the truth is a part of me is angry. Furious, really. Life has handed me more bad cards than I thought could ever be possible, and it’s been one of those weekends were I just want to fold. There is one place I feel comfortable, safe, and content, but I can’t live in that place, and I can’t ask to be in that place as often as I’d like. I won’t elaborate, but it’s just what it is.

I wish I didn’t feel broken and disposable, those issues existed before Behcet’s, but Behcet’s has definitely exacerbated the situation.

I just want to be healthy. I’ll still be weird, but at least I’d be manageable weird.

Life Happens While You’re Not