Dating a Sick Chick

Lately I’ve been thinking a lot about the future, probably because it’s the holidays, and also partially because of the relapse. Prior to relapsing I actually had a lot of hope that I could date, find someone, settle down, and have a semi-normal life. I’ve been married, and while I would get married again, it isn’t a priority for me. I just want someone that I mesh well with, who makes me happy, that I can make happy, too. I had plans for my career, and life in general. If there is one thing I tend to do, is overthink, and over mentally prepare.

Then life was like, “Hey, how about you try to do everything you want to do, but with this busted up body instead?”

Yeah.

My first thoughts were about school and work, because I’m an independent person. I’ll deal with the school situation more in depth in a later blog. The last thing I started to think about, was dating. I wanted to find someone I could at the very least, get along with, and live with. My heart has so much to give, but now I was left wondering how it would pan out as my health issues shifted.

First and foremost, the wheelchair situation. Right now, I’m using a walker periodically, or my dog with a harness. Neither works super well since I have coordination issues that include a foot drop. When I walk without assistance, I look like a drug zombie, who has pooped her pants, and also appears to be shivering from being cold. Even with assistance, I have to take a ton of breaks, and I still look ridiculous. I fell a few times last night, and it was super embarrassing. One guy mistook me for homeless (I was wearing jeans and a decent shirt, but whatever). Another group thought I was drunk. I just took a deep breath and reminded myself that the wheelchair process had begun.

But is a wheelchair going to draw less attention? Won’t people see me and look away? What guy is going to be able to see past the chair?

I know there are plenty of people in wheelchairs who have significant others, but how does one find these people? I also know that I’m lucky that I can walk, just not well enough to do it safely. The chair is for those weak days, or relapses like I’m in now where walking is significantly challenging. I’ve discussed the “friend” I have, and while he has said the chair will just increase the things I can do, I still feel as though it’s going to change things. We will always be in each others lives, he’s truly my best friend, but I don’t think he looks at me as dateable. He’s seen me do chemo, fall down, relapse, seize…I’ve pretty much ruled out my viability as a long-term partner.

So who would take all of this nonsense on?

I’ve been told that I shouldn’t date, because it isn’t fair to put someone else through dealing with my illness. This is something I always fought back against, since it would be the other person’s choice to be with me. Lately, though, I’ve wondered if that statement was also meant to protect me. I could find someone, who is wonderful, but when things shift with my health, will they still be there? Perhaps the suggestion that I shouldn’t date, is more meant to protect me from being hurt when I’m the most vulnerable.

Is there a right way to date as a sick chick?

I don’t know. One thing I always am, is up front. If I meet a guy for coffee or dinner, I warn them ahead of time that I won’t be super hungry. Usually I order a drink, but I avoid ordering food, or I order something small. Then I explain why I’m not eating it. Some guys take it in stride, others have faked work emergencies and left. (I’m not lying about the second part…I was walking home, and he was walking to his car, in the same direction, but he didn’t even say a word to me.) I could have called him out on it, but I didn’t. I was polite. waited to see if he’d call or text, and when he didn’t, I let it go. For future reference, though, this isn’t the best way to treat the situation. At least finish appetizers, say you enjoyed the company, and hell, at least send a text that said you had fun, but that you didn’t feel a connection. Tell me I’m a great person, and I’ll survive.

Sick chicks, don’t be ashamed of your medications. I will take them in front of people, and if they ask, I’ll tell them what I’m taking, and even why. It used to be something I hid, or tried to hide, but that inevitably led to awkward situations where I was forced to explain that I wasn’t using illegal drugs. Yes, that has happened. When you sneak away to take pills, people get suspicious.

How do I do this in a chair though? I can’t go to clubs, can I? What about live music at bars? Is there a spot for me? Will people look at me funny? I’m used to being tall, 5’10”, how will I navigate a world where I’m sitting down!? All of these things are flying through my head, but they’re flying through my head while I lay in bed and type. I couldn’t do anything this weekend because of the ataxia. I want to take the dog to the park, but I can’t  because I don’t want to fall. Walking makes me sweat, even though it’s cold out, and the dizziness comes on so fast.

The sicker I get, the more I make peace with the devices I’ll need to get by…but the more questions I get about my actual future. Obviously my focus is on myself, and my treatment options, but as a divorced woman in her early thirties, I’m going to be thinking about the future on some level. I want to come home to someone, to cook for someone, hell, even to clean up after someone (though I have to amend my usual tactics for cleaning given some of the limits I’ve developed).

For those reading this, I’m curious how you cope with dating with whatever chronic illness you may have, or if you’re the one dating someone with a chronic illness, how it impacts you. I also want people to know that there is no right and wrong way to approach the act of dating while sick, as long as you’re not doing anything to harm your mental or physical well being. Choosing not to date is okay, if it’s something that doesn’t make you depressed or angry. I know right now I’m not actively seeking dates, other than those including my friend, but even that is something I think about critically. I want to make sure I’m not taking over his life with my growing limitations.

It’s not an easy thing.

We will see how things go once all the devices and medications have been put into place. I really just want what a lot of people want at this stage in life. The problem is, I have a less clear path towards obtaining that goal.

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Dating a Sick Chick

The Financial Impact of Chronic Illness

As I’ve mentioned before, I am in the process of getting divorced. In my case, it has been over two years, and the divorce still can’t been finalized. Financially it’s been a difficult two years, with a cross country move, knee surgery, and severe worsening of my Behcet’s. I’ve been lucky to have insurance that covers most of my medical expenses, but when I lost the ability to work, things became difficult. After tearing through my savings, selling whatever I could, and doing my best to keep my bills as low as possible, I’ve found myself and an economic cross roads.

I want nothing more than to go back to work. For my entire life, I’ve worked, and being out of work makes me feel bad about myself. When my Behcet’s began worsening, I just job hopped, hoping I could find something that worked for me, while I got my symptoms under control. The problem was that my symptoms never really got better. During chemotherapy, I was getting temporary disability, which made the basics affordable, but not by much. I moved to a more affordable apartment, but then lost my temporary disability, making it just as unaffordable as the more expensive unit had been. My first two applications for disability were denied, and I was told to await a court date. That date would like be 18-24 months away. On top of that I lost my electric discount, and my EBT benefits, because both required an IRS form that I didn’t have. Last year I made so little, that what I did make was technically owed to me. I also expected to get more back on taxes if my ex and I filed jointly, because I had more in deductions than I had in earnings. Too bad he filed without me, and didn’t tell me.

As it all piled up, I began to become more depressed. Lately there has been a lot of anger, too. It isn’t as though I’m being lazy on purpose. I genuinely don’t know from one day to the next, what I’ll be physically capable of. Sure, once I get my wheelchair, my ability to work a desk type job, is more likely, but it’s definitely not guaranteed. Friends have begun pushing me to find something, because they think I’ll be happier once I’m working. What they don’t realize is the level of stress taking a job would create.

For starters, I can’t drive. My work day, even if it were short, would be lengthened by the commute factor. If I’m really sick, I’d end up using Lyft or Uber, which would of course cost me more. When you factor in the lower wages of most desk jobs, it just doesn’t make a lot of logical sense. Then you have my inability to be reliable. The day of my interview, I couldn’t walk because of my pain level. I was also insanely weak. I don’t have an adequate warning for this. Lately I’ve felt bad most days, but the days when I literally can’t function, are hard to predict.

Perhaps the biggest issue is whether or not I’m going to continue deteriorating, and what treatment options I’m going to undergo. Neurology suspects my neurological symptoms are going to get worse, and if the past is any indication, they’re correct. My GI issues are definitely worsening, and that means I’ll likely be getting another endoscopy and colonoscopy. (I’m fighting this as hard as possible because of issues I have with the preparation.) Neurology wants me back on chemo, but as I said in a prior blog, I plan on suggesting other treatment options first. The various treatments I could undergo, would all require days to weeks off of work. At the moment I require insane amounts of sleep, and I suspect treatment would just increase the amount of sleep I’d need, at least around treatment days.

It has been really hard, and then I got word that my divorce settlement went from something I was okay with, to something that would prevent me from being able to pay even basic bills. To say I was crushed is an understatement. I love the city and state that I live in, and facing the possibility of having to move because I cannot work, is heart breaking. I’ve looked into low income housing but the wait lists are 3-5 years. It’ll take about 3 years when all is said and done, to get approved for disability. What are those of us who are unable to work, supposed to do?

Those with chronic illnesses are more likely to face unemployment or underemployment, than others. When you have multiple doctors stating that a person cannot work, and you repeatedly deny based on age and education level, it’s mind boggling. (Those were the reasons I was given for my second denial.) I look at my degrees, gathering dust, and I’m heartbroken. Recently I had to swap from a laboratory focus, to an investigative focus with my Master’s degree, because I could not make it into school, nor could I safely manipulate the laboratory equipment. When you’ve spent decades deciding on a career, falling in love with the career path, and pushing yourself to achieve school goals despite many moves, it’s disorienting to lose it all.

I will be able to work, eventually, but it could be a while before I’m capable of working full-time, unless I can find something that allows me to work from home. Doctors have stated that I may only ever be able to work part-time, and that’s if we get the disease under control. I want to work, and I need to work, but my body just can’t handle it. Financially I’ve stopped opening bills, because I know I can’t pay them. I’ve even contemplated switching banks because of the amount I owe on my credit card. The monthly minimum payment is making me unable to afford food.

This is not unique to me. Most people I know with a chronic illness that impacts their neurological or gastrointestinal health, struggle to maintain meaningful employment. If they do work, it’s at the expense of their health, and that obviously isn’t ideal. I’ve witnessed members of my family, who really shouldn’t be working the hours they’re working, continue to push their bodies to the breaking point. As my divorce slowly works towards resolution, I have to face things like insurance. How will I afford my medications? I need insurance that covers them. Of course I’ll need to buy insurance…

My goal is to find a work-from-home job that is legitimate, and support myself, but it will take time. The issue is that it’s time I may not have. I find out Tuesday what the treatment plan will be for me, and I’m hoping that it’s something effective, but not debilitating. I keep telling myself that plasmapheresis could be the answer, because it’s important to stay hopeful. Perhaps it will work, and I’ll be able to work part-time, scheduling work around my plasmapheresis appointments. Maybe I’ll find work that I can do from my own home. Whatever the case may be, being chronically ill definitely creates a large amount of stress around the issue of financial security. The disability system is definitely broken.

The Financial Impact of Chronic Illness

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.

Navigating the Potential Work Force

Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.

Then There Was Cancer (Maybe)

Breaking Down

The last few days have been miserable, and the misery continues. I’ve manage to stay positive through most of this recent flare, but things have hit a point where I lost the ability to smile my way through the pain. Currently I can feel every joint in my body, or at least that’s how it feels. I’ve take to googling, “is there a joint in your <fill in the blank>” because I’ll have such intense pain at a random location, that I’m not sure what else it could be. Fun fact, you can get joint pain in your collar bone.

This weekend was a big outdoor music/art festival that I was really hoping to attend. I knew that, unless I was in remission following the Rituxan, I wouldn’t be able to do all three days, nor would I really want to be outside for all three days, but today was the big day. I was really excited about the idea of seeing the Chainsmokers, and then there were a bunch of other bands that also piqued my interest. So, as the flare dragged on, and the symptoms worsened, I’d let go of the dream. It didn’t mean I wasn’t upset by the reality of missing out, it just meant I was prepared.

Until friends started posting photos online yesterday of day one, and I started to really think about how things were going. I’m back to the walker, and even with the walker, I can’t go very far before my body simply gives up. My face is covered in lesions, and people keep saying it’s acne from the steroids but it isn’t, it’s the Behcet’s. My leg has ulcerations, too, and they’re large and painful. The fatigue is horrific, but because of the pain, I’m not sleeping well, so it’s this constant battle between exhaustion and an inability to give into the need for sleep.

I want to be positive. I want to tell myself that the trip to the NYU clinic is just around the corner, and that as soon as I go there will be at treatment plan, and a road to recovery, but on days like today, I can’t even process the hopeful portions of the situation. My friend was shocked today when I told her via FB messenger that I was ready fore chemotherapy. One of the big reasons I pushed so hard for NYU was so that I could avoid chemotherapy and try a novel treatment plan that would spare me the six months, and side effects. Today the pain is so bad, six months of chemotherapy hardly seems like a sacrifice.

When you’re chronically ill, you find yourself missing out on a lot. Strangely, you don’t really think too much about it, at least after a while. Your reality is your reality, and what you can and can’t do isn’t something you choose. I’d love to do what my friends do, but I also know I can’t, so I just go about doing what I can do, and enjoying the moments I get. Still, you have those moments, when you’re confronted with the loss of normalcy in really unexpected ways. I have just over two weeks until I’m expected to makeup a class, or receive an F grade, and I don’t know how I’m going to pull it off. I can’t really move, let alone complete laboratory assignments with any kind of precision right now. Add in not being able to work, so I can’t afford the $100 a week to get to and from classes, and that this is four months straight of on campus coursework…yeah…you see where I’m going with this.

Getting the service dog would be a huge help, but at the end of the day, I’m still very sick right now. The amount of pain I’m in, along with the limited mobility, and visual impairments, is suddenly unavoidable. Previously I had joint pain and fatigue, and the occasional ulceration, but most of my symptoms related to my stomach. I still have stomach issues, and definitely have ulcers brewing internally right now, but those things are sort of simple to hide from people. Yes, I lost weight, and people noticed, but they accepted my excuses, and we went about our lives.

Now? Sometimes it feels like everyone has their lives moving forward, and I’ve stalled. I don’t expect anyone to wait around with me while I sort through the train wreck of mechanical failure that is my own body, but I also worry that, by the time I’m back on the road, I’ll be miles behind everyone else, and worse, miles behind where I want to be. Will I ever find someone who loves me, and wants to be with me, despite the reality that this type of situation could crop up again? Even with chemotherapy there is a chance I have a bad flare, and need more chemotherapy, or some other serious treatment.

It’s hard explaining to people who view “remission” as permanent. It can be, and if it is, you’re lucky, but with my constellation of symptoms, I will always be on maintenance medications. Always. I don’t say it to be negative, I say it because it’s the truth. Even in the absence of symptoms, when they can reduce the drugs I’m taking, they will have me on something to prevent symptom recurrence, especially given the severity of symptoms I’ve had. It isn’t like cancer, where remission really can mean it’s gone forever, and you just keep an eye on things to make sure it doesn’t come back. With an autoimmune disease, your immune system is permanently fucked. Even if it decides to play nice for a while, it’s not friends with you, and it only takes a stressful event, or illness, to trigger it’s overreactive anger.

I want to be working in a full-time position, doing what I love. I want to finish my degree. I want to apply to an internship program and get my advanced licensure. I want to be at concerts, and vacations, and weekend getaways, with friends, and new friends. I want to be out downtown, dancing, in heels and a dress. I want to go out to eat, and actually eat what I want, without fear. I want to sleep through the night. I want to keep my apartment at a reasonable temperature.

Instead I’m looking into filing for full disability. The internship program is impossible, requiring a full 40-hour per week commitment, which I can’t do health wise or financially at this moment. Concerts, vacations and weekend getaways are also unobtainable due to my health and finances. I can go out, on occasion, but I can’t dress up right now. I can only wear flats, and in a dress the ulcerations on my legs make me uncomfortable. Let’s not even talk about the horror show that is my face. Eating at a restaurant is a statistical nightmare. Assuming I can get plain white rice, all I can do is take one or two bites, because the GI ulcerations are going to throw a fit the second they’re touched by anything traversing my GI tract. I haven’t slept straight through a night in longer than I can remember. I’m woken up constantly by cold sweats and pain. The heating pads, and to flashes, mean our apartment is unreasonably cold.

I live in this box, where I smile and give a thumbs up, but desperately want to climb out of the box and just live life. I want my smile and thumbs up to be me doing the things that I want to do, instead of relishing in the joy of the things I can do. It doesn’t mean I’m not grateful for what I can do, it’s just that finding the joy in the things you’re able to do isn’t always gratifying.

Then there is the pain. The severe and horrible pain. Pain that I haven’t dealt with before, that I swear is threatening to swallow me whole. Shooting from my neck, down each vertebrae of my back, like hot little exploding fire balls. Pain in joints I didn’t know existed, and joints popping so loud I swear the neighbors can hear them. Pain that makes me need to be held, when I’m not that girl. I’m not the girl who asks a guy to come over because she’s falling to pieces over her physical state, or mental one. I’m the girl who pulls her shit together and deals with her own crap.

I texted the guy because I’m in that much pain. He’s actually going to the festival today. The day I was dying to go. I burst into tears, not because I was mad at him, I’m actually really happy he was able to make it. I cried because I wanted to be there. It would have been nice to go with him, but I just wanted to go in general. It was like this pile of emotions, neediness which I hate, and jealousy, which I may hate just a little more. Again, I’m happy for him, but it’s hard not to despise my current situation.

You might be a spoonie if you’ve run out of things to watch on Netflix, Hulu, Amazon Prime, and a plethora of other streaming sites…so you order the industrial antenna because why the hell not try and pirate as many channels as possible so you can watch live TV? Especially if that means football?

I want my life back. I want a life back. The quality I have right now is poor, and I’m not asking to run marathons, or jump into some insane routine that involves 60+ hour work weeks. I simply want to live like my peers. I want to enjoy things again

Breaking Down

When Your Nerves Make You Nervous

I have two rheumatology appointments this week, which I’m thrilled about. My old rheumatologist is seeing me tomorrow, and I need to ask her about some lovely lesions in a not so lovely place. Then the following day I see my new rheumatologist who will hopefully be just a *little* nicer to me this time around. He’s the same asshole who wrote “probably” Behcet’s instead of the reality that I have Behcet’s, on my paperwork. (Lovely man.)

Anyhow, I can walk without my walker, but not for long distances. I need to get a can or some other assistive device, but it just feels so aggravating. I find myself pushing myself, then dealing with the numbness and tingling from pushing myself. Of course that leads to the weakness, which leads to me not moving, which leads to a vicious cycle of lather, rinse, and repeat. I know I have ulcers in my intestines, because I’ve given into drinking the lovely sucralfate suspension. It tastes horrific, but the wonderful numbing power isn’t really something to be belittled. It’s kind of scary not realizing how much abdominal pain I have, until I don’t have it, and then realizing that normal people feel like that all of the time.

My appetite is back now that my steroid dose is lower, but then again, so are the ulcers, eye issues, and oh so lovely neurological problems. The Behcet’s headache is real, and it’s nasty. I wake up in the morning with the shakes, and the night sweats are vicious. You spend days wondering if it’s the medication, or the disease, before you realize it’s all basically irrelevant. On top of it I’m poor, so I had to eat what was in the house today. That ended up being a cucumber and vinegar salad, a favorite, but not when you’re mouth is raw. Oops.

The neurological issues have me irritated because I feel like they’re Behcet’s related, but I can’t get the doctors to agree because my MRI’s are, “mostly” normal. Nobody has elaborated on what that means, but from what I’ve gathered there isn’t evidence of Behcet’s in there. I’m not totally shocked given that 90% of my symptoms are peripheral. The seizures are obviously a concern, but with the gallery divided over the cause of that, I guess I’m in a holding pattern. The increased dose, along with rest, seems to be keeping things under control, but I’m also still taking a decent dose of steroids and having skin symptoms. As my steroid dose drops, the skin symptoms increase.

Rheumatologist #2, that I despise, tried to chalk my skin up to steroids, but then the steroids cleared my skin, and he was forced to eat his words. Now he’s back to the same old line, despite me showing old photos of the same rash, which again, cleared at that point with a few steroid injections and steroid topical creams. He won’t talk about neurological involvement, and neurology won’t talk about rheumatology treatments, even though rheumatology’s treatment, 3 days of 1 gram IV steroids, cleared up 90% of all my symptoms…neurological symptoms included.

I guess I’m just terrified of showing up to my appointment in NYC, and having the doctor agree with my current doctors, and not have options in terms of treatment. The reality of having neurological involvement, but no MRI abnormalities, is somewhat terrifying. My right side, particularly the leg, has betrayed me. I also have nystagmus, which honestly, makes no sense, given that I’ve never had it before. I actually did an in depth test years ago that ruled it out as a cause of my vertigo when they were testing for inner ear diseases. The fact that it would show up now, in the midst of all the other Behcet’s symptoms, makes me feel like it’s a sign something isn’t going properly in my brain.

When you’re chronically ill, you get intuitions. It’s even more tuned in when you have multiple chronic conditions. I know I have PTSD, and I can tell you when my heart is racing because I’m anxious, or if something weird is going on with my body. I can tell you when my fatigue is because I’m depressed, or if I am legitimately fatigued from my Behcet’s. I’ve learned to sort out what symptoms go where, because they genuinely feel different. Doctors tend to think patients with mental disorders can’t sort to the mental disorder related symptoms, from the disorders stemming from other conditions. Maybe it’s true, sometimes, but not in situations like this, and not in someone like me.

I need NYU to work out because I desperately need a doctor in my corner who can say to other doctors, “Shut up, listen to the patient, and listen to me.” He’s the expert, and it’s like, if he has my back, the other doctors will have to fall in line. It’s a one time visit, to develop a treatment protocol, and there is a lot riding on it. I’m totally ready to go to the movement disorder clinic here at UCSD, once they find an opening, but I think it’s a bit ridiculous to exclude Behcet’s when every other possibility has been worked up. Why are we searching for something else when I meet criteria, minus the MRI? Why are doctors in the ER calling my seizures psychological, when my inpatient neurology team needed to call a code because my heart started throwing extra beats, and I wasn’t breathing adequately?

In a world where ER doctors are overworked, and chronic illness patients are forced through ER doctors to be admitted, it becomes a cluster of chaos. I’m hopeful that having hospital affiliated doctors will allow me to be direct admitted in the future, should I flare and my doctors decide I’m better off in an inpatient setting, but in the meantime I’m stuck in a place where I don’t know where to go or who to see regarding various symptoms. I have all these specialists to see, and all this paperwork to file, and I pretend like I have it all under control, but really I just want to curl into a ball and pretend like I have the flu. Pretend like this is just something that impacts me for a few weeks, and then I’ll be fine.

School is another stressor, which sucks because I love school. I won’t know until November if the service dog I’ve applied for will be up for placement, and it could be even longer before he’s placed. There are interviews, etc., to take into account, though the trainer seems to be really happy with the idea of me as his companion. The issue is he may have a kidney condition, but he also may not, so it’s, again, totally dependent on the test results, and what they decide when it comes to placement. I have to take a class in October, or I get an F, because I took an incomplete back in April before I started the infusion process. November, December and January are also on campus laboratory courses which, in theory, are doable, if I can find a reliable ride program, and if I have assistance with a dog. This isn’t so true if I’m doing chemotherapy, depending on how I’m feeling during the chemotherapy. There’s a part of me that wants to power through, regardless, and another part of me that recognizes I’d be having chemotherapy during cold and flu season, then going to a college campus.

It’s such an odd place because I haven’t been offered any other treatment options. Long term steroid use isn’t really effective, or safe, and the doses required to control my symptoms are simply too high. The only real way to dent this, at this point, seems to be to wipe out my immune system, and the only way to do that is with some aggressive chemotherapy.

I find myself justifying symptoms I shouldn’t justify. The insane amount of antacids? Well I am eating more. Slipping and falling? I was sitting too long. Bloody bowel movements? It happens sometimes! Then I see my face, covered in ulcerations, and my legs, and my hands, and now my arms, and I realize, that I’m flaring. that my head hurts. That my eyes are straining. That my exhaustion is beyond any normal level of exhaustion. The numbness and tingling, and lack of coordination, it’s not okay, and it’s not something I can  just chalk up to lingering effects of neuropathy, even if it is improving, because it has happened before, and it will happen again.

The MRI was normal, but what happens when it isn’t? What happens when this painful cycle of recurrent flares leaves me someplace random, with legs that don’t work? In the meantime how do we explain the hyperactive reflexes and the nystagmus? Why are we ignoring so many symptoms simply because the main box, the MRI, was checked off as normal?

Something is wrong. Something in my body is not okay. I need someone to hear me, to help me, to believe me, more than I need anything else.

Sidenote: my inhaler and I have been BFF’s lately, which is absurd given the amount of steroids I’m on. Inflammation for every body part I guess?

When Your Nerves Make You Nervous

Scared, Sick, Tired

Being home from the hospital initially felt amazing. I was buzzed off IV Prednisone, and glad to sleep in my own bed. Or at least try. I woke up Saturday feeling generally like crap. A friend came over later that day to hang out with me, and I went to do foot reflexology. It helped a bit, but soon I was bak to misery. Solid foods and I weren’t getting along.

On Sunday I managed, after another night of fitful sleep, to eat half of a small baked potato. I slept better, thanks to some crafty snuggling by the guy that apple heat to a sore hip, and the pressure I needed to stop the pain, but it was only for 3-4 hours. After that I was up every hour. It seems like I’ve been made of urine since starting this Prednisone, despite not drinking nearly enough to compensate for the loss.

On Monday I woke up with a skull crushing headache, convinced I was dying. I tried to call the Behcet’s Clinic in New York, but it was a round around game due to the fact they’re not accepting new patients. Apparently if my rheumatologist confines them to take me they will, and my rheumatologist is convinced they will, but for me it’s a difficult blow. I also found out that I have to handle the cost of the flight, boarding, everything. I’m hoping family in the area can lend their apartments, however sparse the space, but I’m admitted for testing and my insurance doesn’t cover it, that means raising more money.

I’ve started a Go Fund me, but I try and keep things private on here. I also know a lot of us are on here with similar struggles. In any event, if you’d like to message me and request the link I’d happily share it, I just don’t want this blog to have an actual face on it because it’s more about dealing with chronic illness, while trying to keep my privacy since it is public.

Monday was an up and down day. I spaced out the Prednisone so I could eat some bland gluten free pizza, but I only ate half of what I’d usually consume. Then I was up with abdominal pain, and now it’s Tuesday and I’m up with more abdominal pain. Chills, shakes, nausea, headache, check all the boxes, I’m in steroid induced hell. I did more foot reflexology yesterday, but it wasn’t as helpful. I was relaxed enough to eat, but the numbness, tingling, and weakness, have returned with a vengeance.

Today I see the eye doctor, and I’m not dreading it, I’m just annoyed the appointment is so early in the morning, and that I’m awake even earlier than I need to be. The second issue is that I need rheumatology, and I see them tomorrow, but I don’t know if I can go another day without IV fluids or treatment of some kind.

I feel the disease testing me know, all the issues I’ve had before, coming at once, an then this neurological plague. The fog is probably from the prednisone, but I keep wondering if it’s going to get worse, or better. I walk with a walker and wonder who would ever want to take me out? Will I ever go out to a club again? I see myself in the mirror, when my eye aren’t blurry, and I see someone who is too thin, and getting thinner, and I lament the stretch marks from the steroids and the weight loss with a sickening sigh. People say we all have scars, but when you’re still trying to win the battle it’s hard to wear theme.

My life, for the most part, is something I take as it comes. We don’t get to choose what happens to us, just how we handle it. I try not to be negative but sometimes it’s hard not to sink to a depressed place. For the first time in a long time, I’m truly scared. I can’t walk unassisted. I can’t use dangerous items like my stove. I have assistive devices scattered over the apartment, and people on call to stay with me when my roommate is gone because I shouldn’t be alone. I lean on “the guy” way too much, though he does offer, and I just don’t want to weigh him down with all the negativity I simply can’t control.

Being sick is one thing, being sick publicly is another. We all get tired of, “but you don’t look sick,” when we’re exhausted and turning down invites or leaving an event early, but having people notice your deterioration, can be even more jolting. I went from okay, to using a walker in 10 days. Most people didn’t see me wobbling before the hospital, and nobody in the complex saw me in the hospital. Showing up thinner, in a walker, definitely made an impact.

Now it’s just a battle of, “What it…” and though it’s a game I don’t want to play, the reality is that it’s a game I’m forced to consider from time to time.

Scared, Sick, Tired