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.

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The Financial Impact of Chronic Illness

Cytoxan (Cyclophosphamide)

So much drama, and so much going around and around, but I guess that’s the joy of being chronically in. I swear, we should all write passages for a book called, “Chronicles of the Chronically”. This week my pain levels have hit a new level of horrible, and since I can’t really take narcotics without having to worry about potentially having a seizure, I’ve basically just had to suck it up and deal. This has meant a whole lot of showers, heating pads, and surprises. Surprises? Well, for example, one day one set of joints will hurt, the next day, a whole different set will flare up. Yesterday my feet opted to get in on the fun, which I wasn’t really aware of until I got out of bed. Every step, you could hear cracking, and it felt like bones were breaking.

My ex, being the wonderful piece of garbage that he is, has decided that, rather than just go through with the divorce as we agreed, he wants to get a lawyer, disagree with everything, and force the proceedings into court. He doesn’t realize that this will drag things out even further, and worse, cost him a whole lot of money. I’m hoping I won’ get slammed with court fees because I’m disabled and he should have to pay my fees, but we’ll see how it works out. For someone who wanted this over and done with, he sure picked a stupid thing to do. Of course he’s one of the stupidest people I know, so that’s not exactly a huge surprise. He probably figures, since I can’t make it to court, he’ll get a default agreement, or get what he wants. The idiot forgets that I am severely ill, and have a fantastic lawyer. one doctors letter, and boom, I’m officially excused from court proceedings for at least six months, and it also makes him look like an ass because it clearly states I haven’t been able to work, and will continue to be unable to work.

It doesn’t mean the news that he was pushing it to court didn’t stress me out. I found out he’d done this shortly before I found out we were officially moving onto chemo. As far as he knew I was already doing chemotherapy like treatments, which I was, so in his mind I probably wasn’t as sick as I truly am. My misfortune has become his misfortune though, since his girlfriend is due in February. If he truly wants the baby to be able to get Tricare, he can’t have a wife as a dependent, who isn’t the mother of the child. I’ll be doing chemotherapy until mid-April, so unless they want to pay out of pocket for the appointments and birth, he’s going to need to stop being unrealistic.

I think the hardest thing for me has been knowing that he’s supposedly expecting a child with this young woman, and  may be losing the ability to have a one myself. The odds on my regimen range from 60-70% in terms of ending up infertile. Knowing that leaves me 30-40% is comforting, but not really as comforting as having eggs frozen just in case. I found out this week that freezing my eggs isn’t an option. My doctor doesn’t want to delay the start date, and we’re talking about starting next week if the infusion center has an opening. We did talk about Lupron, but there isn’t a ton of clinical evidence it works, and she’s concerned the side effects of menopause could mask whether the Behcet’s symptoms have started to abate. There is also some concern about hormones again, and how that impacts my disease. Would putting me into menopause, then pulling me out of it, end up making me flare immediately after we reverse it? I did have a lot of flares concurrent with my menstrual cycles.

The guy, for his part, has been supportive, joking about whether there is anything sexual that can be done with bald heads, and chatting with me about wigs. He’s also repeatedly told me how he’s here for me, despite my concern that I may vomit and he may hear me. Other friends have come out of the woodwork, too, and it’s nice to know that I’ve got people. Most can’t physically be here, but I know they would if they could. I did cry because I have lost a lot of friends being sick. I was talking about it with the guy, and I told him I felt lonely, a lot, like my illness drives people away, and then on top of it, it prevents me from making new friends. Being introverted just magnifies the effects.

My shitty insurance, while it covers things financially, often only offers me shitty providers, and in terms of mental health providers that’s majorly clear. I liked my counselor, but the doctors regulating my psychiatric meds have no clue what they’re doing. It’s scary when you’re looking into black market ways to keep yourself plugged into society because your doctors have gone crazy themselves. (I’m talking getting backup meds from a friend, not street meds, though there are a lot of drug deals going down as of late.)

Who would I talk to about this stuff besides other sick people though? The guy asked if I thought about looking for support groups, and while it’s a good idea, I also had to chuckle because any support group for the chronically ill, is bound to have a lot of absenteeism. I know I’ve folded under pressure lately, feeling like crap, and wanting to just sleep a little longer. I force myself to wear actual pants to the guy’s place, but the truth is, I’m in pajamas so often ,buying a few more pairs seems like a good investment. (Note: long legs = buying mens pajama bottoms to be cost effective. Victoria’s Secret works, but is the cost worth it, really?)

So chemo. Legitimate chemo. My mother oh-so-kindly pointed out that it’s not real chemo, like cancer chemo…even though it’s the same drug. True, my schedule is less rigorous and involves less drugs, but the side effects, and dosages, still make it a shitty thing to look forward to. As the guy has said, though, I can think about it and prepare for it, but I also need to think about and plan for the end of it. Remission. Vacations. FUN. I had to postpone my trip to Mexico, sad, but I didn’t she the funds anyhow. I’m determined to get to a nice hot tub, somewhere it snows, at some point during the treatment, maybe around New Year’s. I can take a real vacation once it’s all over. I’m also kind of hoping my hair just falls out at this point. Post Cell Cept and steroids, it’s just falling out and breaking constantly. I don’t know how I have any left except that I had super thick hair before hand. My scalp has hurt lately, and more hair has been coming out, so I’m thinking with chemo, it’s bound to just abandon ship.

Cytoxan (Cyclophosphamide)

My Absence (Processing Bad News)

There is never an easy day when you have a chronic illness, but there are definitely days that are better and days that are worse. I had a glorious year and a half with very few noticeable symptoms. Then things went haywire. The issues were going to be resolved, I thought, following a trip to NYU. I would get news regarding the severity of my Behcet’s, as well as all of the treatment options available to me. Unfortunately the process was a nightmare. I was very weak, and had to take my walker with me. My dad was understandably shocked to see me with a walker, but I could walk without it if the distances were short enough. Of course that put a lot of strain on my muscles, but was worth it to avoid the stares of people around me.

The staff at NYU was amazing, and the doctor was, too. I was a nervous wreck and sent my dad to the waiting room because his own anxiety was playing off of mine. We both wanted good news, but because he has an autoimmune disorder, too, we were prepared for bad news as well. (We just never spoke about that possibility.) The doctor came in, reviewed my notes, and confirmed a few things. Regardless of what neurology says, it would appear that my seizures and neuropathy/ataxia and balance issues are related to Behcet’s. It isn’t Neuro-Behcet’s because I don’t have brain lesions. Instead, I likely have inflammation in and around my nerves. This causes the MS like symptoms I’ve had, and explains why some days are better than others. My non-specific abnormalities found on my endoscopy and colonoscopy are consistent with GI Behcet’s. Bad GI Behcet’s. All of the times the doctors said it almost looked like Crohn’s or colitis? That’s because GI Behcet’s manifests similarly. I had nonspecific inflammation of almost my entire GI tract in several of the scopes, and the patchy gastritis in my stomach indicates inflammation there, as well as prior ulcerations. I also had an ulcer in my rectum that was sent for biopsy, but the biopsy was inconclusive.

We went over my other symptoms, including the recent findings regarding uveitis. I told him that the symptoms of uveitis have happened before, but this was the first time I’d been specifically diagnosed and treated for it. With the number of systems involved, and the way my disease seemed determined to jump from one system to another, it was deemed a severe case of Behcet’s. I knew I had it bad, but I hadn’t really stopped to think about what it would mean for treatment. When you get into systemic involvement like I have, the treatment options become more systemic, too. The severity of the GI involvement places me in a position where oral medications are not that effective.

Two options emerged. The first was to try Remicade infusions, with Cell Cept orally. Even though low doses of Cell Cept had made me nauseas in the past, I hadn’t gotten that nauseated. It was considered a reasonable option. The second option, should this combination fail, was to go to Cytoxan, a chemotherapy drug. Obviously the former option would be preferably, even though the treatment timeline was two years. I left excited, but a bit worried. He had said that I likely had developed antibodies to the TNF blocker antibodies in Humira which is why it hadn’t worked, nor had the Cimzia. I’d likely done the same thing with the Rituxan, though it wasn’t really worth trying to test for the antibodies. The Remicade would work, or it wouldn’t.

On Monday, October 24th I finally met with GI here in California, and they gathered a list of tests they wanted done, including another scope. After that early morning appointment, I went upstairs in the hospital to have my infusion. I was relaxed when they took my vitals, a little hungry, and a really tired. They had difficulty finding a vein, and eventually gave up on saving me from having to go to the lab. They were worried if they kept trying to draw blood they’d lose the vein. I took two Tylenol, and a Benadryl, which was protocol, and settled into my comfy chair. The guy sharing the room took control of the TV and put the news on.

Things didn’t go as planned. Towards the end of the first half an hour I realized I felt funny. At first I thought maybe I was just dizzy from not eating, but I realized my heart felt kind of fluttery, and I had some aching that was radiating from the left to the right side of my chest. I had similar symptoms during my Rituxan infusions, but had never said anything except once, and they had just dialed back the rate. (It had been pretty far into the infusion, and on my second visit.) I told the nurse that I felt a little funny, and when she checked my vitals, she immediately stopped the infusion. My heart rate had gone from the high 70’s low 80’s, to 48 beats per minute. My blood pressure had also begun to drop, though not significantly. They called my doctor, and turned up the rate of my fluids. Eventually the aching when I took a deep breath stopped, but the fluttering came and went. My vitals were erratic. They’d check my heart rate and I’d be n the 70’s, but then 15 minutes later I’d be back into the 40’s. The vein blew, and the fluids started to infiltrate. One nurse said it was normal to have some pain at the IV site, but I knew it had blown because I saw the swelling. I was stupid and didn’t hit the call button, I just waited for my nurse to return.

IV fluids were discontinued, obviously, as soon as she realized the IV had blown. My doctor wanted me in the ER for an EKG immediately. I was wheeled down to the ER, bypassed the people waiting, and squared away in record time. The EKG was interesting because I’d had one just a few days before. Both had heart rates in the 70’s, but the one following my infusion showed that the elements of the EKG (essentially the process of the heart beating) were slower. I was still in sinus rhythm, but the findings were classic for an infusion reaction. For the next few hours I was monitored, and my heart kept up the annoying habit of randomly dropping into the 40’s and feeling like a butterfly. When it would go back up it would feel like I had just run a mile, but only for a few seconds. Eventually I was released, and defeated, I went home.

I knew that this was bad. With infusion reactions they usually discontinue the IV, treat the reaction, and begin again, at least that’s how it was in the Rituxan clinic. There was no talk of me continuing the Remicade, and as far as I can guess, I won’t be. They also refused to put me on Cell Cept, which the NYU specialist had said was critical for remission. My doctors here in California were never really on board with the Remicade/Cell Cept plan, because they felt Cytoxan was the best option for my constellation of symptoms. Knowing this, and knowing how fast my reaction came on, and that I’m not a good candidate for more steroids, I really only see one way forward treatment wise…chemotherapy. (The day following the infusion reaction I broke out in an itchy rash, and felt miserable, and that was with just half an hour of medication. It was clear that the drug and I did not get along.)

When I got back from NYU, my hair had begun falling out more and more. It was common following steroid tapers, and I was told that the Behcet’s likely was playing a role. Inflammation throughout my body, including my scalp, meant brittle hair, and hair just falling out in waves. I saw my hair stylist and had her cut off the sad ends of my hair, losing about six inches. I cried as I realized I couldn’t make a bun or ponytail with the remnants, which barely touched my shoulders. I had blue put in to cheer me up, and remind me that I was fighting for Behcet’s, a rare disorder, and something I refused to take me out.

Now, as I wait for November 2nd, when I will find out officially my next course of action, I have good days and bad days. I was asked at my first appointment after NYU, if I had a plan in place to freeze my eggs. The thought of it crushed me. My insurance didn’t cover it, and I didn’t have the money. Even if I sold my car and used what was left from my Go Fund Me, I would be short. There was no guarantee that I’d lose all of my eggs, but the risk is high. Before this my biggest worry was going bald, suddenly I didn’t care that I’d need wigs. I cared that I may never have children.

Moments like this make you see life with a clarity you wish you didn’t have. I’m seeing someone, it’s casual, but it works. We make each other happy, and that’s really all that matters. That being said, being happy has shown me what I do want in life. I want someone to come home to, someone to cuddle up with and watch shows. Someone who appreciates my introverted nature and isn’t judgmental of me for it. The problem is, I still want what I’ve always wanted, before my ex, before my current guy, before I was really dating. I always knew that I wanted to be a mother someday. I was, and am, terrified of letting my child down, but I know that the love I have to give would be enough to prevent failure.

Will I lose that dream? The rest of what I want from life has changed over the years. I’ve adapted so much of my life because of my illness. Trading my dreams of veterinary school, for laboratory sciences. Now I’m hoping for remission because I don’t always have the dexterity for that. I would love to be a physician’s assistant, but again, I would need to be able to be around sick people, so that is pretty much out, too. The lab work, I love it, and I’m hoping it’ll come back together for me. Driving, I miss that, I miss being able to blast music and head to the beach to clear my head. I never thought I would be in debt, but here I sit. As my divorce goes through, I wonder about marriage. I used to think it was necessary, for religious purposes, and because it was the next logical step. Now it’s less important to me. I wouldn’t push someone to get married, but I would get married if they wanted to. I’ve come to realize that what is put down on paper, legally, is less important in a relationship than the way you treat someone.

I do want someone, though. The guy I’m seeing, we have this weird thing going. It’s more than friends with benefits, but less than officially dating. It works for us, and that’s all that matters, but I constantly worry I’m holding him back. We really are best friends, but in terms of what we both want in life, we’re both still figuring it out. The small romantic part of my brain sometimes hopes that he’ll want me, but the rational part of me realizes I don’t bring a lot to the table. I’m a good person, with a kind heart, and a loyal friend, but as a partner in life, I don’t really have a lot going for me. Anyone who wants children? They’d automatically be undateable because I couldn’t give them a key component of what they were looking for in life.

The frustrating part is that is being taken from me, too.

I’m hoping my doctors will talk to my insurance and that something can be done to preserve my fertility. For a while I thought maybe I’d refuse treatment. My quality of life right now sucks, majorly, but I couldn’t handle a childless future. Then my flare decided to remind me why I was fighting. My stomach ulcers bled, the dizziness and nausea kicked into overdrive, and the Behcet’s headaches came back with a vengeance. Any ideas I had about giving up, were washed away.

One afternoon, after a bungled appointment (which is why I don’t find out until the 2nd what the game plan is), I couldn’t go home. I wandered around for almost an hour, then took a Lyft to the beach. I sobbed, watching the waves crash in, and the families on vacation enjoy the water. The guy (as he’s known since we don’t have titles haha), tried cheering me up when he found out I was blue. Eventually I went home, but only because I was cold. I tried to pull it together but then I had a nervous break down. I’m doing that in a separate blog.

My Absence (Processing Bad News)