Navigating the Potential Work Force

More like the “What the F*ck” force…

Before getting really sick, I worked. In fact, I worked so much, I’m pretty sure the stress of it contributed to an increase in flares, and symptoms in general. My relationship at the time was also extremely abusive. Going home was more stressful than being at work, and sometimes I would finish a shift, and just sit in my car in a parking lot because I wanted to avoid my ex. (Yeah, I was winning at life back then.)

Since leaving him and moving across the country, my health improved, before taking a drastic nose dive. As far as we can tell, I was exposed to a fair amount of mold in my first solo-apartment here, but a nasty flare was on the horizon from the moment I moved anyhow. It was a stressful time in my life, and my medications weren’t totally effective anyhow. I got my shit together, found a part-time bartending gig, and made that work…until dehydration, exhaustion, and just general autoimmune issues, led me to having a massive seizure…at work…

After that things got worse. That was when the Rituxan didn’t work, and I couldn’t walk, and we ended up finding out I wasn’t tolerant of Remicade. NYU said do chemo, so we did, but obviously that has failed…so here I am.

The thing is this: I never had a hard time finding work. Even when I was sick, I could find something, I just wasn’t ever sure if I could keep it. When I found out my doctor would be submitting for my wheelchair, I was both elated, as well as disappointed. I don’t want to be the girl in the wheelchair, but being the girl who stumbles around and falls a lot, isn’t a huge bonus either. Plus, with the wheelchair, even shaky and sick days, could still be work days, since I wouldn’t have to worry about fainting, etc.

But how does one find a job that one can do while in a wheelchair?

I cannot work in my degree field, at least not at this point in time, because of issues with shakiness. I’ve decided to move into clinical research guidelines (I think) and do some management of the clinical research that goes on in my area. I figure I may not be able to get into things on a straight laboratory level, but I can still provide oversight. If I don’t get into that, I’ll get into something with public health, maybe even my MPH. In the meantime, though, I have bills to pay. With my divorce hopefully nearing completion, I’ve had to face the reality that I won’t have healthcare anymore. I can pay to keep it, for $475 a month…money I don’t have…and even that won’t give me dental or vision.

Now, if you’ve got Behcet’s, or are familiar with it, you will know that having vision coverage when you’ve got it, is kind of a big deal. I was lucky to have only had posterior uveitis, but it was scary, and knowing that I could get a more severe form (anterior uveitis) that could leave me with decreased vision, is even scarier. I’m already dealing with neurological issues, and GI issues, I don’t need to go blind on top of this. Having some sort of vision coverage, is a priority. My teeth also suck from years of throwing up, acid reflux, poor nutrition, and ulcers. Dental is kind of a big deal, too. I’ve also lost several fillings and have just gotten my fourth crown, because I like to apparently screw up my mouth during seizures.

I want to work. I don’t want to be at home sick. I want to get my own apartment. I want to be as self-reliant as reasonably possible, and I can’t wait 18-24 months for disability to decide what to do with me. I could do office work, but not full-time. I can’t do anything full-time right now because of the GI issues and fatigue alone. The wheelchair will mitigate the balance and coordination concerns. Commute is a nightmare in general because I can’t drive, but I could make public transit work if needed.

All the informative websites say that you don’t have to disclose a disability in the application process, but obviously if my ass rolls into an interview in a wheelchair, they’re going to know. Plus, a lot of the office jobs even state that you have to be able to bend, lift, etc. Even more want you to have a valid driver’s license! Since when was being able to legally drive, critical for being able to answer phones and file patient charts? If I were healthy, I’d have been working all along. If I’d have gone into remission, I’d be working now. The fact that I’m being forced to own up to my limitations, is the only reason I’m so stressed about all of this.

Then there are the scary thoughts. What if my seizure drugs become less effective, and I have a seizure at work? I know it wouldn’t be my fault, but it has happened before, and it’s embarrassing. What if I’m in the ER again, and they turn me black and blue? I’ll show up to work with what looks like track marks running all over my body. How will I answer questions about why I’m in a wheelchair in general, when people know I can walk? It isn’t as though I would be using it regularly, though perhaps at work I would just to avoid the awkwardness of having it around some days and not on others.

Why is disability so damn hard to get when you have multiple medical professionals insisting that you cannot and should not be working?

That’s the kicker for me. My doctors, who have treated me for years, are not comfortable with me entering the workforce again…yet the government has decided I’m too well educated and too young, to actually be disabled. Please come live in the shambles of my life, and tell me all of that again. My ex may have been a bad person, but I keep running through his final words to me, about how nobody would ever love me because I’m sick, and I worry that there was some truth behind his twisted words. What if I don’t find someone who can love me, because even though they may like the healthy version of me, that isn’t the me they’ll always get.

I spend a lot of time saying that I’m not my illness, but it is part of who I am, and I cannot deny that. An oatmeal cookie with chocolate chips, isn’t technically a chocolate chip cookie. My drive and determination may be at one level, but my actual ability to function and do the things I want, and my partner would want, may not live up to that level. The irony in this situation is that I want to go meet up with this chronic illness support group, but I can’t afford the $30/session fee…because I’m chronically ill and cannot work. Thanks universe…the one thing that could have offered support and assistance emotionally…is out of reach financially…because I’m chronically ill.

F*ck me.

So yeah, the depression game is real right now. I feel useless, lonely, and stressed out. The things I want, are out of reach, as are a lot of the things that I need. I’m hoping I’ll find something I can do part-time, just to make me feel productive again, and to help me pay basic bills, but only time will tell if that’s attainable. Everyday I get mad at my body for letting me down. I know I should be grateful that it’s fought as hard as it has, despite the things that its been through, but I just can’t be grateful right now. Overseas they’ve done bone marrow transplant for GI Behcet’s and neuro Behcet’s patients, with 100% remission in all patients. Some patients got transplants for something else, but also had Behcet’s, and all went into remission, too. Granted it was a small pool of patients, because obviously it’s an extreme procedure, and there aren’t that many people who have Behcet’s to begin with…but I still find myself willing.

How bad is that? I want to be admitted to a hospital, have my entire immune system nuked out of my body. Probably throw up everything I’ve ever eaten since childhood…then have someone else’s cells pumped into my body in the hopes that I don’t die from secondary infections during all of it…just because it may give me a shot at normalcy again.

Maybe the question isn’t how bad is it that I want that, but rather, how bad must my current situation be, that the entire scenario actually sounds like a relief?

For now? Steroids and tons of Cell Cept…along with all of the other meds for neurological issues, sleep, and nausea. Truth be told, the most effective thing right now is medical marijuana…for literally everything. I have a strain for the depression, a strain for sleep issues, and a strain for fatigue. All have nausea benefits because I have to have that regardless.

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Navigating the Potential Work Force

Self Advocacy and Research

There is a fine line between becoming a Google doctor, and self advocacy along with research. When it comes to having something like Behcet’s, the treatment options are really all borderline experimental. We can treat the symptoms, get into the more extreme treatments, and then when those don’t work, what happens? Well, you end up like me…tripling your immune suppressing drugs, going on a six week steroid taper, and sleeping more than a sloth in a coma.

When I was having severe neurological symptoms, there was discussion amongst myself and a well educated friend, about things like plasmapheresis and IVIG. The former seemed the most promising, with the latter seeming like an option should they find out my immune system was also somewhat deficient. Plasmapheresis was an interesting find for me, because it has been cited as putting many patients with many different autoimmune disorders, into remission, or at least into periods of remission. I know I’ll never be off of immune suppressing medications…but the idea that I could be free of steroid tapers, and symptoms, is kind of everything to me. I mean, I can’t imagine what it would be like to make plans, ahead of time, and not have to worry about fainting, seizing, and of course, how to eat properly so I don’t pass out but also don’t vomit.

So how do I take what I’ve learned online, and apply it to real life? I don’t know. I’m not that patient who suggests things to their doctors, but I also have come to realize that my doctor is open to my ideas at this point. We didn’t think chemotherapy would fail. To be honest, we’re not totally sure why it failed in such an extraordinary fashion, though my suspicion is that I got a nasty cold, right around the time I began to be exposed to some really nasty stuff in my apartment. My immune system was triggered, I had to lower and even stop the Cell Cept, and that is the perfect storm for relapse. Initially we thought it was minor…but now I’m thinking it was just the beginning of this larger relapse.

Dizzy. Nauseas. Exhausted. In pain.

That is how I spend my days. One weekend rallying to spend time with friends, even though we didn’t do anything insane, turned into me laying in the grass because my legs literally stopped working. The steroids have at least encouraged my appetite, though they haven’t done anything to really help me digest things appropriately. At least the GI bleeding has taken a hiatus.

I want to tell my doctors that we need to try more, that I’m not ready to give up and just accept my life is how it is. I also don’t want to suggest something, only to have them scoff, become annoyed, or worse, try it and have it fail. Where is the line? What is helpful versus ridiculous? I honestly don’t know, but the struggle is becoming insane. One vaccine has left my body struggling to function. My diet cannot sustain what I need to function properly, either. The pain, the exhaustion, it’s all just so overwhelming.

Self Advocacy and Research

When Chronic Illness Pauses Your Life

I found out yesterday that we lost a family member to suicide. My instinct was to get on a plane, fly back home, and be there for his wife and children. Then I had to take a moment to realize that it wouldn’t be possible for me to do that. Financially I can’t afford the airfare, because I haven’t been working…because I’ve been sick. On Thursday I received the Hepatitis A vaccine, and unfortunately I landed in the group of people who react badly to the vaccine. I’ve had a fever, extreme fatigue, and a host of other symptoms. On top of that I’m going through a very annoying steroid taper while increasing my Cell Cept. Then, of course, there is the simple fact that it isn’t safe for me to fly at this stage in my relapse.

When your health puts your life on pause, you learn to just accept it. Sure, you have moments where you’re frustrated, but in the scheme of things you just sort of have to deal with it. In this instance, I can’t make sense of how to make sense of it. There are members of my family that want to see me, and even need me, and I know there is no logical way for me to get to them. I live where I live because there are more medical facilities, and the weather is better for my health…but in these moments I definitely struggle.

It also put a lot of things into perspective regarding my own mental health. I’ve been embarrassed about my struggle with depression…but I still talk with friends about it because I know that I need to bounce it off of certain people. They’ve been instrumental in my seeking increases in depression medication, and pushing for anxiety medication. Still, it isn’t something in my family that is really openly discussed. I know family members who take medication, including myself, but it’s not something that we really are open with. I have friends who take medication as well, but there is still this stigma around it. There is also the idea that you take meds, and you’re better. That is completely not the case for a lot of us. I need to take seizure drugs, my seizure drugs aggravate my already existing depression and anxiety. In fact, they drove my manageable depression into severe depressive disorder.

The person who passed in my family, I didn’t even know he struggled with depression. His wife knew, but again, it wasn’t really openly discussed. For him to go off and end his life was not expected, certainly not the way nor the time that it ended up happening. His daughters are definitely shell shocked, as are the rest of us. Mostly we’re worried for them. To lose a parent to suicide is something I can’t even fathom. Losing a parent is hard enough, but knowing that your father simply couldn’t go on with life, is heartbreaking. I just keep hoping that they know there isn’t anything they could have done to keep him here, and that his ending his own life doesn’t mean he didn’t love them enough to stay. His pain was simply so overwhelming, that he couldn’t see the people who loved him through that painful darkness that enveloped him.

This post isn’t about me taking his death and making it about my health problems. I just think it’s an important topic because of course I would love to just hop a plane and be there with my family. We see how chronic illness impacts things like work and school, but how often do we confront how it impacts our family life? I’ve talked about how I don’t feel like I’ll ever be truly loved in a relationship because of my health issues, and that is still something I struggle with. Coming to grips with my limitations within my own family is even harder. It’s one thing when I am let down by my health, it’s another when I let down others. If I had my wheelchair, I would chance flying, despite the doctor’s warnings…but I don’t. With the other medical issues I’ve been juggling, I know it isn’t realistic to try and go…but it doesn’t make it easier.

Hug the ones you love. Open your arms to those with physical and mental struggles. Talk about mental health issues because they’re not something to be ashamed of.

When Chronic Illness Pauses Your Life

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

So one of the hardest part about this relapse, has been adjusting back to a life where I really don’t eat effectively. I’ll be calling a gastroenterologist, and nutritionist, but I know the testing they’ll force me through will be miserable. I’ve lost count of the times I’ve been scoped, and we never learn anything new. Major gastritis, the occasional rectal ulcer, and overall miserable inflammation. I know I have other ulcers, but I’ve never been able to manage getting scoped during a severe flare. While I realize it would be theoretically valuable I’m not sure what the actual point is. We know I have Behcet’s. Hell, the mention of potential vascular digestive disease, was noted years before my diagnosis, but never mentioned to me. The doctor actually wrote, “possible GI Behcet’s,” with a question mark, in my chart, but never informed me, or my primary care physician.

A few years ago I’d adjusted to the fact I didn’t eat much. I was losing dangerous amounts of weight, of course, but it hadn’t really even phased me. I didn’t feel hunger, or thirst. Often I’d go until the evening before realizing I hadn’t eaten anything, and had only had maybe one drink. As dehydration became an ongoing concern, I made sure to drink…but it took force for me to do it. Eating never seemed like an actual priority, because I wasn’t hungry. There were times when I’d eat a granola bar, and feel sickly full for the rest of the day. I’ve eaten breakfast, and thrown it up at bedtime.

When I’m home alone, I don’t really think lately about how I’m not eating much. I force myself to put Boost on some cereal in the morning, and then drink G2, or Powerade Zero throughout the day. I opt for those, not because I want to avoid calories, but because they’re not as strong flavor wise as full on Gatorade or Powerade. Lab work has shown that my potassium and calcium are barely within the normal range, so I make sure to go for electrolyte drinks whenever I can. I’m already noshing on Tums like it’s my job, so I’m not totally sure why my calcium is low, but I can only do so much.

In public, my inability to eat is a whole different matter. It’s embarrassing. I met a friend for the first time this weekend, and it was so awkward to take her to brunch with a mutual friend, or order in food, and have to explain to her that I couldn’t stomach it. I ate half a piece of plain gluten free french toast, and felt like I was full of razor blades. I later forced myself to finish another full piece, and a half of another half, before having to call a quits. This was after the benefit of Zofran, and carafate. Following that it took several hours before I was comfortable enough to move around, and ultimately some medical marijuana to prevent the nausea from consuming me that evening.

After a weekend on the go, my body was protesting violently. I was drinking as much G2 and Powerade Zero as I could stomach, medicating appropriately, but crashing hard. On Sunday we were all going to the botanical gardens, and I figured if we parked close, and only did the gardens, I could push through it. There ended up being an event going on, and I couldn’t bring myself to refuse the idea of walking through the park. I knew on the way back from the fountain, as I insisted I needed some sort of beverage or preferably an  snow cone, that I wasn’t going to make it long. I’d accidentally left the G2 in the car, and even if I’d had it, my legs were just giving up the fight. Through the weekend I’d had neurological issues in terms of my heart rate and dizziness, but I’d managed with both medical marijuana, and some newly prescribed klonopin. (At night I use clonidine.) We all approached a shaved ice truck, but it was too late. I knew I was going down, and the only thing I could think of was to gracefully plop down in the shade under a tree, lay back, and try not to cry.

In the end my friend who was with me through chemotherapy, and everything else for that matter, came over, and noticed the tears in my eyes. The new friend was getting our drinks and shaved ice, and he assured me that it was okay. Nobody was judging me, and I would be back on my feet in no time. I just sat there, cursing my body for failing me. After a few minutes I was able to push myself into a sitting position, but I’d lost all feeling in my legs. They rewarded me occasionally with some muscle spasms, but remained totally numb. I was literally poking myself, and I couldn’t feel it. This was scary because while I’ve experienced the sensation of not knowing where my legs are, I’d never actually tried hitting or touching them to see if I could at least sense external stimuli. The answer apparently, in bad situations, is no.

Eventually I ate some ice, rolled a cold water bottle on my legs, and was able to walk to a bench with assistance. My new friend was sweet about the whole thing, and my other friend brought the car around. I was just embarrassed. I was also angry. I’d spent the prior week preparing for the trip with an ER trip, two doctor’s appointments, and IV steroids, as well as oral ones. (I’m going on a two week taper starting tomorrow). We knew I was flaring up, but I thought I had a handle on things, I just hadn’t known where the flare was headed.

One new sign of my Behcet’s has been the annoying development of something called lived reticularis. From what I understand they aren’t totally sure what causes it, but it’s found in patients with autoimmune conditions, and is thought to be an inflammation  and/or spasms of the blood vessels near the surface of the skin. Unfortunately for me, mottled skin in the abdomen is also a sign of some pretty serious, and even life threatening conditions. It’s also not as common in the abdomen, as it is in the lower limbs, which made the whole thing a huge concern for my doctor. It was such a concern, that when I emailed her on a Sunday about whether or not I should make an appointment for steroid injections for my other symptoms, and mentioned the “rash” with an included photo, she immediately responded and suggested I go to an ER for an exam, and IV steroids.

I wasn’t that concerned, but went into the ER anyhow. I’d been having GI pain, and figured maybe it would be a good idea to get the damn thing checked out. Plus, Sunday nights are usually slower in the ER, more so than Mondays, and my primary care doctor was on vacation. The ER was slow…but because of my medical history, and the look on the triage nurse’s face when she saw my abdomen, I was taken back quicker than usual. I also saw a doctor while I was still finishing putting on the gown. Blood work was taken, IV’s were started, and a CT was ordered. During the blood draw I kept clotting in the tubing. My IV actually blew, filling my hand with saline, and requiring a second IV. At this point they were very concerned about my vascular system. They informed me, up front, that there was a good chance I was throwing clots in smaller vessels, or even in larger ones, and they were doing the CT to check for abnormalities, the blood work was for the same reason, perhaps even more so given my severe allergy to CT dye.

After the IV steroids, I cried. The rush from the steroids, combined with finding myself in the ER, facing potential admission to the ICU, was just too much for my tired brain to process. When you spend six months enduring chemotherapy, only to face such a potentially severe complication of relapse, a part of you breaks. Luckily for me, a 4-year-old who was in a car accident with her parents, was put in the room next to me, and she was hysterically funny. This kid took an airbag like a champ, apparently had an abrasion on her forehead from it, and was laughing saying, “Balloon go boom in car, right on face!” Her parents were crying, and this kid falls off the damn hospital bed, lands on the hard floor (I heard her), and laughs going, “haha I fall!”

That kid pulled me out of a panic attack, allowed me to find a way to get the TV in the room turned on, and settle myself down.

In the end my tests were normal, but I was given the option to stay if I wanted to stay. They couldn’t guarantee that the vascular pattern was totally benign, but I also wasn’t ready to stay in the hospital. I went home, promising to follow up with both my rheumatologist, and PCM. I saw my PCM three days later, where I was informed that livedo reticularis, in my case (as well as in the case of many others), is merely cosmetic. Since being on low dose steroids, the appearance has lessened to some extent, though it hasn’t totally disappeared, and has had moments when it is definitely worse than others.

Additional issues have included an overwhelming increase in fatigue, as well as a significant increase in heat intolerance. I’ve spent an uncomfortable amount of time laying on my bathroom floor after baths, and really need to get a shower head that detaches so I can wash my hair easier. I gave up standing in the shower a long time ago, unless it was to rinse my hair, but even that has become a rather dangerous endeavor.

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

Relapse Struggle

I’ve begun this blog so many times, but the wording always seems wrong. Either I’m far too upbeat, or I’m far too pessimistic. This is my attempt to just be honest.

About a month ago I began struggling with increasing fatigue. The weather here has been more hot and humid than usual, so I told myself it was just my neurological issues acting up. I’d also had a rather nasty seizure due to a delay with filling one of my seizure medications, and my rather stupid decision to go for a long walk without drinking enough water. One of the issues I struggle with when my stomach acts up, is that I really don’t feel hungry or thirsty, until quite late in the day. The seizure led to a nasty infection in my hand, because I’d managed to give myself road rash from thrashing around on the really disgusting sidewalks downtown.

Now, at first I chalked up feeling like crap, to the antibiotics I had to take for that infection. Since I’m immune compromised, they’d done a massive IV infusion, then really major oral antibiotics afterwards. I think I was in denial, but I kept thinking about the cold I’d had, and telling myself, “You had a nasty summer cold, the weather has been hot and humid, you were on antibiotics,” etc. I basically just kept coming up with options other than a relapse. Then the bleeding started.

My GI bleeding isn’t exemplary in terms of amount, but it is exemplary in both persistence, and the obviousness of it being from my actual intestines and not my rectum. I did have rectal ulcers, and one oh-so-lovely genital ulcer, but none of that was bleeding. I could feel the stabbing pain in my colon, as well as various points in my intestines, and the color wasn’t bright enough to have been strictly caused by the rectal ulcers. Try as I might, there was no denying I was at the very least, having a GI flare up.

Things only went downhill from there. My appetite became so poor, along with my thirst, that I began purchasing Gatorade and Boost. Then the shaking began. I’d been dealing with morning shakiness for a while, but the amount of time I spent violently shaking became longer and longer. I would get up at 9 or 10 in the morning, and shake until 1 or 2 in the afternoon. My service dog in-training was a bit annoyed that I needed him wearing his harness at all times, because I couldn’t trust my footing in the house. Soon I was using my walker again. I fell into the dishwasher, pulling it loose from the wall, and even fell a few times while outside.

I was lucky enough to finally get my primary care doctor to inject me with steroids, but I haven’t tolerated the oral steroids, meaning I’ll likely go in next week for more injections.  I’ve begged my doctors to allow me to self-adminster IM injections at home, but they’re all insistent on going the oral route, or going into the office for the injections. My primary care doctor, and neurologist, have both decided that a lightweight wheelchair is a good decision. I won’t use it all the time, but on days when I’m feeling weak, it’ll lessen my fall risk. I also hope that it will enable me to return to work, as disability was denied again. Now they’re saying I have to weight 18-24 months for a court hearing, even though the state failed to process my neurological issues, which is one of the biggest reasons I can’t work reliably, along with the GI issues, of course.

It’s hard to know what to feel. I have this overwhelming urge to stay positive, but I’m pissed off. I had my last round of chemotherapy in April. I relapsed 4 months later, with my severe symptoms cropping up around 5 months after completion. I spent more time going through chemo, than I did in remission. While I’m beyond grateful that my neurological issues are stable, I’ve had to face that I will never be neurological “normal.” After breaking down in my neurologist’s office, he suggested that I was emotionally unstable. I wanted to smack him. Of course I’m emotionally unstable, my body continues to let me down, even when I do everything in my power to try and give it a fighting chance.

So that’s where I am as of right now. Financially struggling, emotionally struggling, but still determined to find a way to live my life. At least once my wheelchair comes, I can begin to make plans without worrying that I’ll be too weak to participate. I have a backup option for mobility. I’ll also (hopefully) stop falling like a drunkard while walking around downtown on hotter days. I still worry about things, like finding love, and settling into a family someday, but I just have to hope that it all works out. First and foremost I need to find a way to persevere, even if my body seems determined to drag me down.

Relapse Struggle