Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never knew existed, and it’s in demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

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Changing Your Expectations and Being Okay with It

Operation Relocation?

**Disclaimer: I made a gastroparesis blunder today and overestimated the capacity of my system. Therefore, due to extreme nausea, this blog is being written under the influence of medicinal marijuana. I doubt I’ll edit it before posting. Hopefully my point is made.**

One of the harder parts about being chronically ill, is the financial strain. Even with good insurance, the medical bills pile up. Maybe your main plan has a low catastrophic cap, but what about vision and dental? In my case there is also the reality that I’m the only one that is capable of bringing money into the home. Yes, I get alimony, but along with the finalization of my divorce, comes the reality that I’ll have to pay to keep insurance, and that excludes vision and dental.

Inhale.

The reality of my current state is this…working isn’t possible. Lately walking the dog around the block has been a victory. That victory is short lived because walking the dog wasn’t the only task for the day, and now I’m exhausted. I’ve been waiting on disability, but could still have to wait over a year for my court date. What is a person supposed to do when they’re disabled, but can’t get disability?

I have a credit card that was maxed out between my knee surgery, and chemo. I’ve reached the very end of the road when it comes to pretending you’ve got everything under control.

People can tell I’m faking.

Relocation has become a hot topic, because where I currently live (San Diego) has a high cost of living. I, personally, don’t feel like I have a ton of other options. I have a large service dog, a small retired service dog, and no income aside from alimony. There is nothing in San Diego I can afford, and not many roommates are willing to tolerate the dogs. Family has implored me to move back east, but for a variety of reasons, including all that snow, I’m not sure that would be a responsible choice.

Recently I was offered the chance to live in my aunt’s condo, rent free, in Florida, from May through November. My first thought surrounded the word “free,” but the following thoughts were full of pros and cons. I have made a list, on my whiteboard, and they are exactly even as of right now. Medically there is the fact I’d have to find all new doctors, comfortable with Behcet’s, and then find new ones again because I’d only be there for six months…

Okay, enough about me.

I’m not the only person who faces financial stress because they’re chronically ill. How many homeless people have you met with severe mental or physical disabilities? They didn’t just decide to live outside one day. Society needs to do a better job of helping those who cannot reliably work. I could get a job tomorrow, but I would lose it by next week. I don’t know what days I can eat and what days I can’t. I don’t know when I’ll have severe pain, or nausea, and be unable to make it into work. This is something most of us “sick” folks deal with.

My friend was lucky, she worked for a grocery chain that let her work when she was well, and accepted her absences when she was gone. She didn’t make much, but it made her feel good to be working. When you’re not working, it can become depressing, You want to be contributing. So why don’t we have something for the chronically ill that allows them to work when they’re able, and receive disability benefits regardless?

The assumption is that tons of people abuse the system, and file for disability or other benefits because they’re lazy. Maybe some do…but the process of being approved for disability is beyond broken. I have friends who have been in the system for 3-4 years, while they have bones literally fusing their spines and ribcages. This friend would still work on good days, because she likes feeling fulfilled. That doesn’t mean she isn’t disabled.

Think about it like this: you have a system designed to provide financial assistance to people who are unable to work do to a disability. The reality is that some of those people would work when they felt physically able, but the amount of work they would be able to do would never be enough to provide for them financially. So, instead of working, they wait for their disability benefits. The limited funds must be carefully regulated, so they wait a long time. What if the government realized that those of us who cannot work enough to financially provide for ourselves or our families, could still work in some capacity? Couldn’t we have the chance to work within the disability system itself?

I am great at office work. I am amazing when it comes to organization and filing. You need a friendly face to greet guest at reception? That person would be me. It just may only be me for 2-4 hours at a time. It also may only be me a day or so per week, with gaps in between. I want to contribute, I want to be part of something bigger and better than sitting at home, or at the doctors office. I think most of us who are chronically ill, want to still have a purpose that we pursue.

Some have been lucky to have family and friends to stay with during their financially challenging times, and I’m not saying this as a slight to my friends or family, it’s just something worth noting. There are people who, for whatever reason, rely on themselves during the challenging times, and it’s definitely an anxious thing.

Social programs need to step it up, because they could be so much more, and they could help so many more people. In the meantime I’ll just be figuring out whether it’s time to relocate. It isn’t an easy decision, sick or not, and it’s something that is really weighing on my mind.

Operation Relocation?

Wheelchair Evaluation and Fundraising

First and foremost, my wheelchair evaluation is in exactly 10 hours! My apartment is nowhere near ready for it, but it’s as good as it’s going to get for right now. One of the aggravating parts about any chronic illness, is having a list of things to do, and only enough energy to do a few things. The kicker is never knowing which things will drain you. I thought for sure I could at least fold and organize my clothes. Instead I ended up with clothes in boxes and baskets. It’s chaos, but at least my space is open for the mobility advisor.

Unfortunately the kitchen and living room are an unusable mess. I try my best to take care of my own messes, but I’ve run out of energy to keep up with my roommate. I know I need to follow through with my promises to do cleaning in lieu of utilities, however, it is just too much. When I was nightly cleaning, I would often end up having him fry something after it was all clean. It just felt futile.

People have been saying, “You walk fine,” and rolling their eyes when it comes to the wheelchair. They don’t seem to appreciate how much effort it takes to walk “fine”. I am constantly reminding my body where things are, and even the constant tension of my muscles can’t always prevent a fall. I used to walk blocks to take the dog to the grassy area. Now going around the block is nearly impossible. There tons of places and things I’d love to do, but I know my body isn’t capable of the walking required.

I am getting a wheelchair because I have ataxia. I am not coordinated, and it is worsening. I also have tremors. A few steps for me, equals a whole lot for someone else. Toss in my difficulty get adequate nutrition, and you have my life.

Then there is the fundraiser. I started a fundraiser to help me keep insurance once my divorce is finalized. It will be hard to continue living where I am living regardless, but if I cannot come up with insurance funds, I’m not sure where I would go or what I would do. There was sone resistance since I did a fundraiser to get to NYU a year or two ago, but that was under different circumstances. My divorce settlement has shifted, and the shift leaves me without insurance, or a way to pay for insurance.

I hate asking for help, but sometimes it has to be done.

Just a short update tonight. I’m quite tired, and I have to be awake earlier than usual!

Wheelchair Evaluation and Fundraising

Don’t Make Decisions When You’re Panicking

My friend Molly lives in Mexico. She works in the U.S., but she lives in Mexico, and she loves it. Lately I’ve been struggling financially. That’s a lie, I’m drowning financially. As I try and come up with ways to stem the financial hemorrhage, while my symptoms increase, my mind starts to scramble, I start to tell myself I should just run. It isn’t rational, and I know it…but I can’t help but embrace the flight after so spending so much time embracing the fight.

This is why you don’t make a decision while you’re panicking.

In the past month, I’ve thought about moving to Virginia, North Carolina, New York, Washington DC, Washington State, Los Angeles, and Texas. This isn’t an over exaggeration. If anything, I’m forgetting a state or two. The only real reason I haven’t moved forward is that I love it where I am, and the thought of having to move myself, and two dogs, wherever, is daunting. I’d also have to rent my room out.

It isn’t undoable, it’s just not something I should (or would) rush into. I have thoughts, though. I think about stopping my medications, seeing what happens. It isn’t because I want to get sicker, but because some part of me hopes that I would get better. There is no logic behind it, in fact, I know logically that it would be a terrible plan. Even on my current medications, I struggle to get by. I required IV fluids on Monday, and I’m sure gastroenterology tomorrow will decide I should be getting IV fluids more often. (At least I hope they come to that conclusion. Waiting until I’m sick enough to warrant an urgent care or ER visit, is just not good for my body.)

I want to go camping. I want to have a normal life. I want to ice skate on the beach. I want to fish off a pier.

It isn’t just about what I want though, it’s about what I need.

As I move forward with scheduling an appointment with the new mental health provider at literally the only clinic within 30 miles that takes my insurance, I have to face the reality that they’ll force me back into counseling. Don’t get me wrong, counseling is a wonderful tool, and it has definitely helped me in the past…but the type of counseling I would receive, isn’t the type of counseling that would help me in this instance. We could go through my history, and evaluate why I feel how I feel about myself, the causes for my low self esteem…but that won’t change the limitations that I have now.

I’ve found a lot of counselors don’t know how to approach someone who is chronically ill, which is a part of a the reason why I blog, and started an Instagram. It’s also why I plan on starting up a YouTube channel once I’m able to acquire the space and privacy. Us sick folks talk to one another, but we aren’t really honest about the emotional toll our illnesses take on us. We may joke about not having personal lives, being in long-term relationships with our heating pads, or cheating on Naproxen with Acetaminophen…but the thread in all of that is that we joke about it.

When you’re chronically ill, you’re more likely to make light of your difficulties, than to be honest about them. You’ve been judged for complaining, so now when you need to vent, you do it in a comical way. Friends laugh with you, even chronically ill friends…but who do you have that is willing to listen to you when you’re genuinely struggling?

I think the answer to that question is probably scary. I had a friend who would always listen to me, and I would always listen to her…until one day she told me my disease was consuming me. This was about a month ago, and I shut down. I threw myself into only being positive about my disease and the conditions that sprung off of it. And while I know that there is a lot of positive things that I can focus on as a result of having Behcet’s, I’d be lying if I didn’t admit that I grieve the loss of a lot of things, especially this time of year.

When I was younger I made plans. I was the insane planner. Even when I began to get ill, I still had plans. I didn’t think about my disease worsening. I couldn’t have imagined the path my life would take. While the divorce should have been foreseeable (it was to those around me), my Behcet’s becoming the severe was never even on my radar. My ex told me nobody would ever love a sick girl like me, but I had told myself he was only saying it to hurt me. He knew that I was insecure about my health, I still am, and he couldn’t have known at that point in time that my health would rapidly decline…still…the words haunt me.

I had plans to have kids around the age of 30. I’m 31, single, and am on several drugs that you absolutely cannot take during pregnancy. It also isn’t known whether or not the Cytoxan impacted my fertility or not. My run in with cervical cancer also cost me a chunk of my cervix, right in the center. While I was lucky not to need further treatment, just a few more biopsies and regular tests each year, I was warned that I would potentially need a cerclage during pregnancy to prevent preterm labor. Two different doctors also told me, point blank, that I would be high risk from the second I conceived. The second told me that even without the drugs I’m taking that cause issues during pregnancy, I would still need to carefully plan any pregnancies. It isn’t a case of deciding when I’m ready to start a family, it’s about actually seeing doctors months in advance for blood work, supplements, and other tests.

It isn’t just the idea of starting a family. I know that I theoretically have time for that, and there is adoption and surrogacy if carrying a child myself isn’t possible. The other issue is that it’s the holidays. While most people love this time of year, I find it utterly depressing. For years I was in an unhappy marriage, and the holidays meant making sure to put on the correct face and attitude. I had to be convincing. I had to go to my ex’s coworkers’ parties, and while there were some good times in my marriage that I could lean on for support, there were many many reasons why I was anxious in these situations. Would I say something wrong? Was he looking at me in a way that meant something I should be able to pick up on?

I had thought being free of that would mean that I could relax, but because of my health, I haven’t really been able to enjoy the holidays. While I’ll never truly know what he, or anyone else for that matter, is actually thinking during the holidays, I know that I look around and feel so utterly alone. Thanksgiving? I can’t eat. Christmas? I desperately want to ice skate this year…but I know that doing so would require adaptive equipment and I don’t want to be the girl with a walker on the ice skating rink. Perhaps I’ll go see a movie on Christmas day, to try and distract myself from just how alone I feel…but there is so much of me that resents my body during these periods of time.

Plus time! Holidays remind me that time is passing,g and I can remember last year choosing to do all of my chemo treatments near holidays so that this year the holidays would have to be better. Instead I’m being reminded that I sacrificed those holidays and now I’m stuck fighting for a treatment that manages my symptoms better. I don’t regret doing chemotherapy, it was the right choice, I’m just desperate for something that can make me enjoy my days in general.

The holidays are just anxiety provoking for me. I want so much, but am so limited. Even the idea of getting my wheelchair has been bogged down by the reality that the process takes some time…and my insurance coverage is going to be gone soon. The up and down and go-go-go of the seasons, probably give most people with chronic illnesses a bit of anxiety!

I told myself for Halloween I’d carve a pumpkin, but I didn’t. I told myself for Thanksgiving I would find gluten free stuffing, and spend time with my friend in Los Angeles, but I couldn’t. There are things I want to do for Christmas, but I’m afraid to even say what they are, because I don’t know how to make them happen. Perhaps I will go ice skate on the beach, even if it means using adaptive equipment, but I would have to do it alone. Nobody I know could afford to go, hell I can’t afford to go, but I really want to do it. (It’s on my bucket list.) The people I do know who could afford to go, probably wouldn’t want to see me with one of those stands children use to keep themselves from falling.

To be honest I really wish I could just spend a weekend in a cabin, and see the dogs play in the snow.

Well, I guess I put it into words. Perhaps the idea is to have ideas, but no expectations. I wanted to be somewhere else at this stage in my life, and I may just have to accept that my path has shifted. It doesn’t mean I won’t have the things I wanted, I just have to find a new way of getting there…

Don’t Make Decisions When You’re Panicking

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.

Dating a Sick Chick

Bonus Blog – Stress and You

So I wasn’t going to write anymore today, but I had some things come up that I’ve realized could be beneficial to others. For over two years I’ve been locked in a chaotic divorce with my ex-husband. The relationship ended, and it was a mutual decision, but it became clear that he hadn’t expected me to actually leave for good. The relationship was bad. He cheated, or tried to cheat, and there was extensive abuse. He was cunning enough about the abuse to stop actually putting his hands on me once he realized the marks were obvious, but it didn’t stop there. He would slam on the brakes in the car to scare me, and once it was so violent that my shoulder dislocated and relocated. I ended up in a sling. He would throw things, and if they hit me, insist that it was an accident. There was a lot of verbal and emotional abuse. Screaming right in my face until the spit was just hitting me as I sunk to the floor.

Point is, it was bad. 

It took me too long to leave, but I did eventually break free. I thought we had a decent agreement in place, but after he began playing the same games he played during our marriage, I got a lawyer. There were assets that needed to be divided, including savings and the house, not to mention alimony. As soon as I got a lawyer, all hell broke loose.

I have bad luck, and soon after landing a decent job, it became hectic, and my health flared up. I had kidney infections, and when I didn’t have kidney infections, I still felt miserable. It was something I couldn’t keep under control well enough to work full-time, but I tried, because the position was supposedly transitioning to a work from home for part of the week. This angered the manager because she wasn’t allowed to work from home (we had very different roles, in fact, I was the only one not selling in the office, and everyone else that was selling distracted me from the work I had to do. ) Then I blew out my knee and that was the end of that. Everything got worse, and the stress got more and more unmanageable, which was when my Behcet’s, of course, started to really press down on me.

I have autonomic neuropathy, linked somehow to the Behcet’s, and when my disease flares, the neurological symptoms flare along with it.

Now we’re 2+ years into it, and I thought we were done, but of course, the saga continues. I had blocked his number which led to me getting tons of odd calls from his area code where he lives, as well as many hang up calls from blocked numbers. Worse, his girlfriend (possibly fiance) knows my number, as he’s used HER number to contact me while his number was blocked. Yeah, I’m sure she’s just sitting on the information when he’s telling her, and both of their families, that they can’t get married because I’m the one holding up the divorce.

Everyone says don’t get stressed, but when you have to answer the phone because you’re waiting on information for a repeat three day EEG, and your wheelchair assessment so you can get at least more mobile, it’s not fun to be getting calls from people pretending to be doing a sex survey, or sell you random stuff. On top of it, I’m facing homelessness because I cannot afford my apartment, and my other bills. My dogs need to eat, as do I, and at some point if this divorce ever finishes, I’ll have to pay for my insurance as well. I could be homeless as soon as January, and nobody realizes it. 

So what do we do? I’ve just sort of accepted it and leaned into it. If I freak out hardcore for a while, then calm down, it seems to work better than if I try and bottle up the rage, and fear. I vent to those who are willing to listen, and take advice as it comes. Mostly I just allow myself to feel the anger, and anxiety, while telling myself that my nervous system was already in overdrive, so the shaking and sweating will eventually slow down. It’s not a good feeling, and I hope the people reading this don’t have to deal with it often, but maybe my words will help you feel a little less alone.

Personally I find his actions despicable. To treat someone, even someone you don’t know, the way he’s treating me, is just so wrong. I would never treat a stranger like this! To take advantage of someone in a weakened state is so sociopathic. There isn’t any reasoning with him, either. Things have to be his way. I don’t use the term sociopath lightly, either. We had testing done, and he was off the charts for both narcissistic personality disorder and antisocial personality disorder. The best part was that he was so insistent the forms had to be done right, that he wouldn’t let me fill them out by myself. Instead, he came in and added things to the lists, which only drove him further up on the scale. My doctor told me that I needed to consider getting out, that he wasn’t capable of changing because he lacked empathy and remorse.

The stress is there. I can’t live in a stress free world, and I don’t have money for massages or anything that would help me destress. (I would sell one of my less than stellar kidneys for a nice long foot reflexology session right now!) Put on a nice smelling candle, play a stupid game while listening to stupid tv. Take pleasure in your pets. Remind yourself that you are fighting, and fighting hard, but that you’re also still human. I’ve had so many breakdowns recently, and I’ve started to really wonder if I can keep going on without someone carrying me. While it would be amazing to have someone living with me to share the household chores and ultimately make sure I don’t fall on my ass, that just isn’t the case. I have a roommate, but he’s much smaller than I am, so if I were to take a fall, it would be on the dog to get me vertical again.

Just think of the things and people and places, that you love. Go there in your mind, breathe in the scents, touch the related items and textures. Breathe through your nose and out your mouth. Center yourself and remember that you’ve had days like this before, and you can conquer this one, too…even if you have to throw a few things and cry first.

Bonus Blog – Stress and You

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