Just Say (YES) to Drugs

So I’ve spent the last several weeks convinced I was going insane. Not just a little nuts, like anyone with a new job, and on campus classes, who happens to also be in the middle of a potentially contentious divorce, would be, but honestly insane. Last week I met with my mental health doctor who prescribes my sleeping pills and anxiety medications,and she agreed that I was majorly depressed. Again, not a shock as I was sobbing over literally nothing as I sat in her office. We ran through all the potential drugs, drugs I’ve tried, drugs I’ve liked, drugs I couldn’t take because of the Behcet’s and my history of seizures. The most effective drug being the one most likely to cause seizures, and therefore thoroughly on my “never EVER take this” list.

I sat there, and I felt more broken than I’ve felt in a while. There is something about becoming emotionally broken that takes a harder toll on you than the physical breaking does. When someone sees you’re covered in bruises, or ulcers, or your eyes are super red, they see that you’re sick. When you’re mentally shattered, and good at pretending to be fine, it takes longer for those around you to realize you’re not okay. We settled on a drug, but she wanted my neurologist’s okay before starting. When he hadn’t gotten back to us in 24 hours, she said to go ahead and start it because she was concerned waiting longer was going to be detrimental. I needed this drug in my system, my depression was severe.

Then my neurologist called…

Did you know that Keppra can cause major depression? I didn’t.

I have this rule, I don’t read all the side effects because I take too many pills to really  spend my time worrying about the various things that could happen to me. I know what to look out for with the major side effects, and that suits me just fine. No need to worry about tornadoes in Texas if you’re standing on a shaking fault line in California. Point is, I didn’t know. They’d been steadily increasing my Keppra dosage, as my depression got worse, and then had the audacity to suggest psychogenic seizures even though my mood issues seemed to only become a problem after the dose had been increased.

The answer right now is halving my Keppra, and adding in Lamictal, something I was allergic to before, but the doctor is hoping I’m not allergic to this time around. I still have to start the antidepressant along with the sleeping pills, but I will say this: weed works wonders.

There was a time when I swore, even though it was legal for medical reasons, I wouldn’t do it. Now, I’m grateful that I have the option. In terms of my depression, anxiety, and sleep issues, it’s perfection. The same goes for my issues with nausea and appetite. I’ve given up on the idea of, “just in case of emergency,” because I’m sick of living in a body on the brink of giving out. Why should I wait till I’m in the flare of the century to use my vape pen or vaporizer? Why should I juggle a dozen pills that make it all worse, when I can alleviate the need for several with just one plant?

Look, I’m not saying marijuana is the answer to every ailment out there, but it’s definitely got some major pharmaceutical potential in it’s raw state. Why would I forgo the obviously beneficial plant, for the synthetic Marinol pills (that are federally legal) when they’ve been proven not to be as effective?

A friend told me to make a list of things I want out of life, and that I want out of a partner. (This stemmed from a talk regarding my woe over turning 30, mid-divorce, and feeling like I’d never have a husband and family.) I realized that a lot of what I wanted, were things I needed to be healthier to obtain. My exes scathing words, “nobody is going to love someone who is sick like you,” rung in my ears, but I heard them differently this time.

I need to love myself, illnesses and all, before I expect anyone to commit and love me.

I am a good person, I do good things, and I care about people, but I don’t have much in the way of self-esteem. My issue is that I feel defective and disposable, and having an illness doesn’t help with any of that. When you pull out your medication back, and stare at the bottles and bottles of pills, it’s hard to separate yourself from the illness It’s hard to figure out what parts of me are lovable.

So yes, I smoke medical marijuana, and I think it’s het only thing keeping me from having a physical and emotional breakdown at this point. My nausea is easing, my depression is lightened, and even my anxiety is more manageable. I’m still taking all my regular medications, but I was able to hang out with the guy (who is naturally just soothing to begin with) without being to overtly awkward. When you live most of your life in pain, alone, and uncomfortable, you start reaching for whatever makes it better. For me the only gateway Marijuana opens up, is the gateway to a better future.

Just Say (YES) to Drugs

Steroid Pain and Major Depression

So this flare was apparently the flare to end all flares. I’m talking eye involvement, ulcers throughout my whole GI system, skin ulcers, headaches, and concern about ulcers in my bladder and vascular kidney changes. That of course means one thing: steroids. I got an injection Wednesday right in the doctor’s office, and was okay, a little sore in my legs but that I figured was just coincidence because I ran a ton of errands without eating or drinking enough.

I forgot about the pain side effect.

Today I was supposed to start on 50mg of Predisone for 4 days, then 40mg for 4 days, 30 for 4 days, and so on till I finish 4 days of 10mg. I only took 20mg, and within hours the pain was severe. I dragged myself through five hours of work, without crying somehow, but I could feel every bone in my back and ribs. My hips feel like they’re on fire, and then there are the muscles in my legs and arms. I’m a shaky, painful mess, and there has to be a better option for patients than this. I’m going to call tomorrow about Methylpredisolone since I seem to tolerate that better for some random reason.

My primary care doctor is handling it because my rheumatologist is as per usual MIA. But whatever. I may end up with an incomplete for my class, and I can’t miss work, so this is just life right now. Painful, literally, but it is what it is, and all I can do is push forward.

I worry I made the wrong decision leaving today early when given the chance, but I hurt to much to care at this exact moment. I helped as long as I could, and I wasn’t scheduled to close, while the other girl was. It isn’t ideal, but it’s life with chronic illness. I want more, but it’s just whatever.

I’m also throwing the poor guy I’m seeing all out of sorts because I can’t think clearly. Between my depression flaring majorly, and now the flare and accompanying steroids, my texts are random, scatterbrained, and in general not timed right at all. I want to apologize and explain it, and there are things we do need to talk about, but I’ve gone and brought it all up at the wrong times in the wrong ways because my brain is functioning on too little sleep and too much medication and/or depression.

I’d like to point out, too, that having PTSD while you also have an autoimmune condition is a pain in the ass for so many reasons. Doctors can never seem to sort out what is being caused by your mental issues vs. your physical ones, even though I know the difference. My fatigue lately? Combo of the two, but mostly because I haven’t been sleeping which is the depression at play. I just sort of come unglued and can’t focus on anything, falling asleep is impossible, and that’s just how it is for me I guess. The anxiety is part of it for me, so  I thank that plays a role.

Damn you body…work!

Steroid Pain and Major Depression

Victory and Defeat

So I haven’t had a 72 hour EEG because the company my neurologist works with only does them on Fridays-Sundays, and because I work weekends, that’s obviously not an option for me. My faith in EEG’s is null anyhow. I’ve done weeklong studies at Yale, been told that the seizures, and seizure “like” activity were all due to stress, that I didn’t even have a medical condition aside from PTSD, and that ultimately my issue was psychological, not physical. They were wrong on several of those assumptions, but the seizure situation has remained perplexing.

From around 21 until 28 or so, I was relatively seizure free. There was one incident when I wad dehydrated, but it didn’t stand out as a recurrence of my old seizure patterns. The doctors had told me in the ER that maybe I was just more susceptible than others, and that normal EEG readings while I felt normal weren’t all that uncommon. After I stopped drinking, and began taking immune suppressing drugs, the seizures became a shadow n the back of my mind…or so I thought.

During this time I had what I called “my little episodes.” They presented like strokes, and sometimes scared the crap out of me. I would get numbness and tingling on my right side, followed by confusion with speech. I would see an orange, but maybe only be able to say apple if I could say anything at all. In my mind I knew what the things around me were, but the connection between my brain and my mouth seemed to become severed. After being diagnosed with Behcet’s, I had moved to NY, then back to CA, where I confronted my neurologist with the question: could I be having transient ischemic attacks (TIA’s), also known as mini-strokes?

He felt this wasn’t likely because my MRI’s had been normal, as had tests for blood clotting. However, he did say that partial seizures were likely the culprit, especially once he saw the video. I protested, of course, because I never lost consciousness, I was convinced that seizures weren’t the answer. Turns out I was wrong, or so the doctor said at that point in time. One normal EEG later, he was calling them seizure like episodes, and I was beginning to feel insane again.

After this last string of seizures, courtesy of some asshole who felt like drugging me, he said he was obligated to report me to the DMV. Crushed is an understatement. I take my meds. I’m compliant. Now I’m being punished because I went status epileptic after being drugged? Thanks a lot universe.

Still not sure what it means. I have to see what the paperwork says when I get it from the DMV. I can’t afford to uber or Lyft all over town, but I also can’t afford to have my license suspended either.

Just another day…

Victory and Defeat

The Good, The Bad, The Frustrating

So my life sometimes feels like one funk followed by another, and having both PTSD, and Behcet’s means I often have to pick apart whether the symptoms of the funk are related to both conditions, either condition, or neither condition. We all find ourselves in funks, and my PTSD comes with a boatload of anxiety, which triggers depression. Likewise, the Behcet’s related fatigue (and annoyance over being ill) also triggers depressive states. As I approach my 30th birthday (cue the gasps) I’m being constantly reminded through friends that it’s a big birthday, but for me it’s just another day.

I started my new job last week, and to say I hate it would be an understatement. I’m not using my degree because I haven’t gotten my license, and the jobs I qualify for without my license are all full-time positions, a situation that my current health doesn’t allow for. Maybe if I didn’t have school, too, but between work and school, I already have to carefully carve out a social life. My roommate and friends will say, “it’s a paycheck,” but they’re failing to recognize how absolutely soul crushing it is to find myself in this position. I have a B.S. that should open up a wealth of job options, only my health closes those options drastically. Most places want full-time employees, who can work a 9-5, which means an early rising time given the 30-40 minute commute to most of the locations. Since I can’t really eat during the workday without risking massive GI upset, I would have to have something bland, hope the liquid diet during the day sustained me, then eat as much as possible in the few hours between getting home, getting homework done, and passing out.

Lather.Rinse. Repeat.

“Wait,” say the friends, “it’s okay not to have a social life during the week, that’s what weekends are for!”

Not when you have a chronic illness. When you push yourself to pull 40-hours out of your body Monday-Friday, you definitely don’t go out Friday night. You go to bed early, sleep in till 1pm on Saturday, and are still so overcome by fatigue that you probably don’t do anything that day either. By the time you have any energy for anything, you’re taking an online exam Sunday, and trying to rally a few friends, or your guy you’re seeing (if he can still put up with your lame ass) to get together for something but not too late because oh, that’s right, the week is starting up again.

Depression isn’t exactly a shocker when that circle of life is your life. I’ve talked about my fatigue with my rheumatologist, but unfortunately that seems to be the one thing symptom wise where we haven’t made a ton of strides, and where people who don’t truly understand the fatigue associated with chronic illness just lapse into confused glares. When I say I’m tired, I’m not saying I don’t want to stay out much longer, I’m saying I’m going to sit on the floor of the store we’re in if we aren’t in a socially acceptable place to sit within the next 5 minutes. Yes, I have sat on the floor in Bed Bath and Beyond, because the display beds are displays, and in any event, they were just too damn far away. I’ve witnessed people abuse Adderall to stay up and study for exams, and found myself wondering if that would help, at least revive my social life, knowing full well I’d never actually do it because my heart would probably stop, or some other horrid symptom would arise.

My point is, when you’re starting to contemplate off label uses for what basically amounts to speed…you’re going to lapse into depression.

The good thing lately is that my hair, for whatever reason, is growing again, and not just longer, but thicker, too. (This sounds like a Viagra commercial, sorry!) I took the plunge today to dye the dark hair lighter because I’ve missed being a blonde, and if I have to dye it routinely to cover the grey, I might as well enjoy the color while I’m at it. Of course going blonde has always been associated with mental breakdowns in the past, so my friends who have become aware of my sudden trip into blonde hair land are waiting for the news of my current heart break, anger, or some  other life altering whoa.

I’m not saying I’m completely happy. My birthday is coming up, and despite my attempts to deflect the fact that I’m turning 30, I do realize that I am turning 30. I figured I’d be starting a family around 30, and instead I’m going through a divorce that should have happened years ago. Maybe if I’d left back then, I’d have found happiness and have started over by now, but we can’t live in what-if-land, and besides, I do like a lot of the parts of my life right now. Even though it’s still casual, the guy I’m seeing is great, and I’m living in a city I love, a city I may not have found my way to had I not stayed in my shitty marriage as long as I had.

I don’t think there is a woman on this planet who approached turning 30 with gusto, even if they did it following some survival scenario. Yes, being one year older is better than being dead, but it’s still not exactly woo-hoo worthy when people throw at you the fact that you’re going to be 30 as if you’re supposed to suddenly rethink your entire life. Thanks universe, I was already doing that…

My job sucks, and I need to change that. I can’t be 30, even in graduate school, clocking into a job that makes me wish the building would quietly burn down without harming anyone. As nice as my coworkers are, the fire that a lot of employees seem to have, for a job that is borderline pointless 75% of the time, is never going to burn within me. When I put on my horrible uniform I’m just reminded that my body failed me. I feel where my belt hits my sensitive stomach, and I sit in the break room and watch everyone else eat while I pick at bland chips and count down the miserable hours until I can go home and eat some real food. At least if I was enjoying my job between those moments, I could at least have a sense of accomplishment, but instead the entire thing is one long exercise in hating my body for letting me down.

Last night I injected my Humira, and I was grateful, but spiteful, all at once. I do this injection, and it burns, and it helps, but it doesn’t make me feel normal, and nothing will. Even constant steroids won’t give me normal stamina, and they’ll just cause a bunch of side effects that I hate on top of it. Even now, I’m working in a field where I’m encountering thousands of people in a day. Yeah, THOUSANDS. I didn’t really think through the potential germ impact of that scenario.

We will see where this all goes.

The good? My hair is in great shape, so the blonde is coming. By 4/26 I should be a total blonde.

The bad? My job is a soul sucking reminder that my body has failed me, and continues to fail me.

The frustrating? There isn’t a damn thing I can do besides go with the flow. And, you know…bleach the fuck out of my hair. Hey, I have to control something. 

The Good, The Bad, The Frustrating