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

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

Cytoxan Round #3

Ugh. Ouch. Gurgle. Noooo.

That about sums it up. The process went really well, I only had to get stuck twice, but they did increase the dose. I was pleased to have manageable side effects during, but immediately afterwards I felt gross. I had a fever of 101, which I usually am around 97.3 (which was where I was before the infusion.) I knew I had inflammation issues, but they gave me steroids so I thought I’d feel better. Nope. My bones hurt. Yeah, my joints hurt, but literally, the BONES in and around all of my joints are just horribly aching. I’m dizzy. Now, several hours later, I’m definitely a little nauseas. Thankfully I ate when I cam home, so if I can keep it down, I won’t ruin the foods for myself forever.

I’d rather have pain, than nausea, so I am grateful in a sense, I just hadn’t thought I’d have the choice to trade…or that the trade would be so debilitating. It feels like my joints are falling apart, and the bones are just shattering to bits. That’s it, in a nutshell.

My pre-dose drugs are a bit different than the average bear, as are my during and post-dose drugs, but that’s because my intestines suck, and I can’t stay hydrated to LITERALLY save my life. I get 500mL before, then 1L during the infusion (they piggy back the meds with the fluids. before I get the Cytoxan I get Zofran for nausea, and Decadron (the steroid). I’ve been told varying things about why I get the steroids, but ultimately they help me with inflammation, and because I do have extensive drug allergies, putting that in my system is kind of a “better safe than sorry,” thing.

The one drug I get that other people don’t usually get in a pre-dose, is Ativan. Listen, I try to be tough, but chemotherapy scares the living crap out of me. I don’t enjoy any aspect of it. The first dose made me feel dizzy and nauseas pretty rapidly, and during the infusion no less, so I was sort of done after that. I’d gotten Ativan for my muscles to stop twitching (disease side effect) and it worked, so then they opted to keep it in my regimen for anxiety. They also added promethazine at the end of my infusion, so I could have that in my bloodstream for my short ride home. Hey, anything that allows me to drink more fluids, is a win.

This particular drug combination makes me sleepy. This is ideal. I want to sleep. I don’t want to think about what the drug is doing in my body, what I’m missing by going through this process in terms of school, a social life, and just being who I want tone, and I definitely, DEFINITELY, don’t want to feel any of the horrible side effects I tend to have with these meds.

Which brings me to a realization I just literally made with the last statement…side effects. Steroids tend to cause deep bone  pain for me. Some more than others, but it is an issue. Hopefully this will fade instead of worsen, though I have had intermittent bone pain 10-14 days after each infusion, so we’ll see.

I wasn’t a pansy, and went by myself for once. Well, I did try and pansy out and find someone to come, or pick me up, but it was for the best for me to face this alone. I need to rely on myself, while still learning to ask for help when I genuinely needed it. Sure I was afraid, and I wanted someone to hold my hand, or distract me, but I did take a nap. At the end of the day, it wasn’t a dire situation, and I have enough of those that I face alone as it is, so it makes sense to try and evaluate the actual need.

Depression and anxiety are still a thing. A major thing. I wish I could say that I had more good days than bad days, but I’m like a functional alcoholic at this point. I am profoundly unhappy, not nobody who knows me would guess that I’m a negative Nancy. To the people around me, I’m the positive girl. I’m handling my situation wit patience and grace. Above all, I take it day by day and smile.

Gag me.

Okay, maybe it isn’t that extreme, but let’s be honest for just a little while: nobody who is chronically ill, is also a diehard optimist who pisses rainbows all day everyday. It’s not physically or mentally possible. There is a difference between appearing positive, and actually buying into the things you’re saying. I fake it a lot, and a lot of the times I’ll end up in a better mood having faked my way into one…but other times I get even more depressed. I see the version of me people seem to love, and I die a little inside because that girl isn’t me.

Sometimes I cry on the floor in a ball. I scream at lab reports, and books about Behcet’s. I stare in the mirror and struggle to recognize the balding, often bloated, version of me that stares back. I get anxious about going out more than ever. It used to be a fear of vomit, and getting groped or drugged. Now it’s just wondering if my wig is going to fall off, or if I should be wearing a mask because of the germs. At least my fears regarding gropers and drink drugging have taken a hiatus. Nobody wants to touch and/or drug the bald chemo chick.

This is why I get asked a bunch of questions before my infusions. I get to talk about pooping with several nurses. Then I get to talk about my weird bruising. Then we chat about my battles with neuropathy. Then it’s the mental health assessment. Yes I take medication for depression…the anxiety situation is another story. technically my antidepressant should work on both. Hahahahaha, have the drug companies tested it on someone with my particular life configuration?

That’s the point though! My life is absurd. It’s absolutely mad. If I weren’t anxious and depressed, I would be certifiably insane, and worthy of institutionalization. 

My reality is painful. I don’t feel as though I will ever be truly loved, I don’t feel like anyone will want to live with me, share a life with me, and I’m not talking marriage, though I’m open to the idea if I found someone who wanted that…I just don’t personally think marriage is what should define a relationship. How two people treat one another is really what defines them as a couple. That aside, I can’t find myself being loved, being lovable. Sure, I’m kind. I’m not a bad person, but I have issues with depression, anxiety, and worst of all Behcet’s. I feel like the only kind of man who would “love” me, would be the caliber of man that my ex was. My ex is not capable of love. He lacks empathy. He can mimic emotions having seen them, but he doesn’t feel guilt or remorse like a normal person does. I won’t ever live that way again, ever, but that decision makes me feel like I will always be alone. Like women like me have to settle for poor quality men, simply because the good guys won’t settle for broken women like me.

It’s all deeply rooted in childhood nonsense, an I can reread it and realize how absurd I sound, but anxiety and depression don’t work off of logic. I’m anxious about living alone forever because I like to cook and clean and have someone to be there for, and have someone who is there for me. I also realize space is a blessing, and have always valued my own alone time, and the alone time of others. I am a good person, but I’m not good to myself. I know this. Changing it is the struggle. Trying to sort out wants and needs, all while feeling like you’re simply not lovable. It’s a horrible feeling.

“Nobody will ever love a sick girl like you.” The last thing my ex ever said to me in person. It replays a lot, but it’s not always his voice. It’s the voice of friends who have left me. It’s the voice of family members who judge my decision to slow down my graduate school coursework. It’s the voice in my head, my own voice, when I see couples holding hands and walking. It’s the voice of my depression, latching onto every ounce of venom in those words, words he knew would break me. He said it to crush me, for leaving him, but I kept walking. I didn’t humor him, give into the fight, and postpone my drive. He would have loved feeling like he won. Instead I just kept walking. I told myself that I wouldn’t believe, and I still hope that maybe someday  I won’t. Right now? It still feels pretty real, and it’s cold, hard, and hollow.

Cytoxan Round #3

Seiz(ure) The Day

I was supposed to go see a band play tonight, but now I’m pretty sure it isn’t happening. There is a point where the stresses of life become aggravating. What I want, isn’t what I have, and I struggle desperately to reign in my expectations. I don’t know if my roommate will want to renew our lease in March, and the whole situation has me pretty anxious. It would be easier not to move, but I’d be okay with moving…if I had an affordable place to go. The truth is that I love living downtown, for a variety of reasons, but the cost is problematic. I sold my car in a hurry, but didn’t get nearly what it was worth…only to have my ex decide he would keep paying me the money I rely on for rent.

My whole life I’ve pushed for independence, and now when I actually need to be independent, my body has given up. I know that I need to relax. I know that I need to sleep. I know that I need to listen to my body and let the chemotherapy do it’s thing. Knowing things doesn’t make acting appropriately any easier, though.

Things with my ex reached a boiling point last month, and while he has assured me he’ll be civil, I’ve been fighting the military to try and have something formally put into place. Unfortunately for me, they don’t want to get involved. It isn’t a civilian issue anymore, because he has pushed me into a flare with his nonsense. Still, they insist I need to run around to about half a dozen different locations to fight for access to the funds that I’m entitled to. It’s a joke. The military clearly states a bunch of things regarding separation and payment for spousal support, but then they go and enable the service member’s intentional lack of support. It’s absolutely disgusting.

Let’s be clear, too. I don’t care that my ex has a girlfriend, or that they’re supposedly having a baby. What I care about is the basic fact that he is paid more for being married to me, and that the military states he is required to support me despite the fact we are no longer together. I do take offense to the fact that this girl is living in what was our house, solely because I’ve been forced to stress over housing, enormously, while she moves in and acts entitled to things that are literally mine. I’m talking household items I was given as gifts or purchased for myself, that this girl is using as though she’s been with my ex for years.

I stress despite the reality that my debt is less than what most of society has. It stresses me out because I work hard to be debt free, for years, only to find myself accruing debt once I left my abusive marriage. Things I had to purchase because my ex refused to send me anything? I didn’t have the funds for those items. Add in medical catastrophes, and yo get my current predicament.

Last night I wanted to hang out with “the guy,” but I wasn’t feeling phenomenal. It sucked because I felt fine, ate, then felt sick, then felt fine, then as I left for his house, it was like my stomach went completely haywire. I didn’t dwell on the situation because I knew that I had eaten a big meal. Still things felt really off. We went to bed late, but I couldn’t fall asleep. My body felt weird, and my stomach felt off. Looking back I recognize the signs of a seizure coming on, but at the time I didn’t think about it. I haven’t had a full blown seizure in months, so I legitimately thought my stomach was acting up. I remember going to the bathroom, thinking I was going to throw up, feeling like I needed to lay down on the cold floor, and then nothing. There is a block of time I’m missing, about an hour and a half or so, and the rest of how I got back to bed etc., is fuzzy.

Nobody knows why I have seizures. For a while they thought it was psychological, but then I started having them while on various monitors, and they realized there were serious issues with my breathing and heart rate during and after. Codes have been called, drugs have been given, but I don’t remember any of it. I can remember the weird stomach feeling before, and sort of after if I’ve been medicated, but if I don’t get medication, I really do lose chunks of time.

I definitely had a seizure, and it upsets me for various reasons. The first is that I sleep better at the guy’s place, than my own. I honestly was looking forward to some good sleep given that I didn’t sleep while the night before. Hindsight? Not enough sleep and not enough water = seizure activity. I went to his place dehydrated and fatigued, and stayed up without water, just adding to my problems. The second reason I am upset is that I like spending time with him. He calms me. There is just something about him that brings me from an anxiety ridden state, to a calm one. I still worry about things like where I’ll live in a couple of months, but as long as I have him around me, I don’t dwell on it.

Then there is the reality of the things I miss out on because of my health problems. Tonight I should be seeing a band with my friend, but I won’t be. I could have gone last night, but I didn’t, and maybe it’s for the best. Still, I want to be the person I was before. I was exhausted, sure, but I was working and going to school. Now I can barely function for school, and that’s doing it all from home! Forget work.

There is this thought that socializing is this extra thing we do after we’ve done the things we have to do, but when you’re sick, socializing takes on an extra meaning. Things are taking from me one by one, and I clung to socialization, even though I’m introverted, because it was the last thing I could do to feel normal. Now that is falling apart, and I feel raw and exposed. Looking for another apartment, it’s so painfully obvious. I don’t have a job. I’m relying on disability, but I haven’t gotten my permanent disability sorted out yet. I struggle but the struggling gets me no where. I tell myself if I get that sorted out, then I don’t have to worry about housing, but that would only qualify me for low income housing. Here the low income housing options are sort of terrifying.

What I want has fallen away. I know I have to focus on needs before wants. That sucks. I’m almost 31, and I want to live the life I want to live. I want to go to school, and finish my licensure. I want to have my license, and a car. I want some semblance of normalcy.

My ex wasn’t right for me, who he was is someone who shouldn’t be with anyone. That being said, I would like to live with someone who enjoyed having me cook and clean. I miss it. Not him, and not our home, but the idea of a home. It’s silly to some, but if you knew me you’d understand. I was genuinely ready for marriage when I got married, despite how young I was. I’m still ready for that structure, living with someone, taking care of someone, but I’ve had to let it go. Who would want to live with me?

I know my ex was abusive, but I can’t stop pouring over those final words he said to me. He told me that nobody would ever love a sick girl like me. I know that they were words spoken to hurt me, and that I shouldn’t take them to heart, but they fester in my mind. I keep thinking about them at times like this, when I’m not the person I want to be, when I’m not doing the things I want to do. What if nobody ever loves me? What if my health is what it is, and I’m destined to be alone because of it? I have so much to give, but I also realize that my health is a horrible drain on the people around me. Even if I don’t ask for help, it’s obvious that I don’t feel well.

Just breathe, I guess. In and out…and hope that maybe it will all make sense.

Seiz(ure) The Day

Depression Depression Anxiety

It’s like a really miserable game of “duck duck goose” in my head right now. I can’t figure out if the depression is making me anxious, or if the anxiety is making me depressed, but it’s probably a combination of both. The doctors told me during the first round that it was normal to have a dip in energy levels around nadir, because that was when my blood counts were at their lowest. Accepting that is what is happening, has been a lot harder though.

I don’t feel like myself. When my hair started falling out during the steroid taper, and I cut it shorter and shorter, I kept trying to find a new identity along with it. Coloring it fun colors, and denying that my life was changing as the diagnosis got more severe, and the treatment options more debilitating. When the first round of Cytoxan left me holding clumps of hair, I felt empowered for about a minute after having what hair remained, off. Then I felt lost. My wig doesn’t fit me well, and though I can go to the wig shop and have a new one made, and fitted, the process of getting myself there is difficult. (The shop is about half an hour from me, and I cannot drive.)

Friends have fallen from my life, and the people I expected to reconnect with upon returning to San Diego a year and a half ago, haven’t all been understanding regarding my limitations. Why would they be? Some get it, but some don’t, and almost nobody understands the emotional aspects of it all. I have no hair. My once clear skin is red and bumpy. My weight fluctuates 10 pounds constantly due to not eating, then eating whatever it is I happen to be hungry for.

My primary care doctor increased my depression medication upon my request, but I haven’t found a psych doctor that I like yet. The practice that takes my insurance and is within reasonable distance cost wise for commuting, has really odd opinions on medications. Mostly they push what the drug representatives drop samples off of. They are making a move away from controlled substances, despite the fact that I do well when I have Xanax or Klonopin to take as needed. I will get my medical marijuana card renewed so I can get new marijuana strains that work better for my specific needs, but even that wouldn’t help me much right now. I can use it to cure nausea and help me sleep, but it doesn’t do much for depression.

Nothing really can, because my reasons for being depressed are completely logical. I don’t look like myself. My divorce has become bitter and hostile, despite the fact that we initially were in total agreement regarding terms. Things with “the guy” are still comfortable, but as I become uncomfortable in my own skin, I risk everything around me, including our situation. Both of us tend to be anxious people, and when my own anxiety and depression mounts, I have to distance myself to spare him added stress. I know he’d do his best to cheer me up, but ultimately be brought down in the process.

Is it really depression, though, if someone is going through all of what I am going through? I’m positive that I’m chemically imbalanced, given what I take for my Behcet’s and PTSD, and my limited diet…but how does that differ from depression in someone who eats normally and has no other underlying medical conditions? Depression in the chronically ill, or terminally ill, isn’t a new issue. There is a reason that mental health questions are asked prior to each chemotherapy infusion, but that doesn’t change the internal struggle I have with myself when these moods come on. I’ve lived with PTSD for a little over 10 years, and the symptoms have decreased, only to increase with this recent loss of self identity.

For so much of my life my identity was defined by what I did for others, and who I was to others. Now that I’ve finally been forced to focus on myself, there is a shock value associated with it. Suddenly I’m thinking about where I want to be, and go, in life, and then I see where I am now, and it all becomes overwhelming. There are things we can do as people to get where we want to go, but there are so many things out of our hands. When your health becomes a roadblock to success, you feel vulnerable, and exposed. A huge part of me feels unloveable. A friend has suggested that I have been uncomfortably comfortable in the situation with the “guy” because I don’t think I deserve more.

But how could I look for more? Right now I’m barely capable of maintaining myself, let alone a relationship with another person. Financially, emotionally, physically, I’m struggling, and while there is a huge part of me that lusts after the comfort of having someone there for me in a more concrete manner, I have to recognize that I’m not in a place to return what I would take out of a partner, at least not without sacrificing some of my own health in the process.

It boils down to wants versus needs. I have to recognize that my body is a need state, I need to do what I need to do to knock Behcet’s down, so I can pick up the pieces and build the life I want. I just wish I knew how to kick the depression that bogs me down in the fight. This last few weeks has been absolutely miserable. The treatment is never fun, but this time around it was more painful because I went alone, on very little sleep, with a ton of stress mounted on my shoulders. Going alone made me realize that “the guy” could and would be there when and if I asked him, and if he were available, but that I had to lean on other friends, and myself. In that moment, I wasn’t strong enough, though. I went into that treatment on the brink of collapse, having shaved my head the night before, and dealing with stress from my ex.

I am depressed. I am anxious. I am chasing both of those conditions around and around, to the point where I must look somewhat manic to the few people who choose to still remain close to me. As I focus on my needs, and give into the sleep my body craves, I hate my body for it. I pretend pain that I feel doesn’t exist, and that I can do things I know I can’t do simply because a huge part of me wishes it were true. That I were capable of achieving whatever I set my mind to. I pretend that it is me walking my dog for an hour along the bay. I pretend that it’s me, dancing downtown, and living it up. I can only pretend for so long though, before I succumb to the sad reality of the four walls of my bedroom.

There are inspirational quotes around, and jokes, and funny photos and movies…but there is also reality. Sometimes it’s just too much to deny. Sometimes you just have to cry, and accept the raw pain of a chronic illness, and serious medical treatment.

Then there is chemo-brain, which I almost forgot to mention (ironically.) Some people have said that the chemo-brain scenario undoubtedly contributes to depression, because you’re in a fog, an you’re operating slower. It’s definitely a real phenomenon, and I’m grateful I’m only taking anthropology during chemotherapy (thus far anyhow) because the professor agreed to let me audit the course from home versus come in and do the labs. (I still need to sit in on the course in six months when it’s on campus, but that’ll be doable, hopefully.

If there was anything I clung to, it was that I was in graduate school, and I had a plan for myself. When that all went out the window, I lost my identity as a student. Now that I have one class, I’m thrilled, but I’m still freaking out. What if I don’t do well in this class? What if they can’t fix the filing grade I got from taking an incomplete and not finishing within six months? (I took the course during Rituxan, couldn’t finish, and then the first month of chemo fell RIGHT on the six month mark, so I obviously missed making it up.)

I’m the one who tells everyone where everything is, courtesy of PTSD hyper vigilance now I’m the one running late due to misplaced keys, or sim,ply running into a room to get something and forgetting what I came for. My identity has been stripped to the bare bones, and it truly is a struggle for me to figure out what I’m going to do at the end of the day to define myself i na positive way. Right now I just feel like that “sick” girl.

Depression Depression Anxiety

Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2