Realizing I’m Not Procrastinating…and It’s Okay

So I’ve been trying to do homework for the majority of the last few days. I will get some done, but inevitably fall asleep, or lose focus. Prior to getting really sick, this wasn’t an issue. I could watch complex shows, and catch on quickly, every single time. There was no such thing as me not being able to focus on an assignment. Sure, I’d procrastinate, but when I sat down to actually do the assignment, I’d do the assignment. Today, I sat down to do the assignment, and I simply couldn’t answer more than one question at a time without requiring a break equal to the amount of time I put into answering the question…or even longer.

I’ve had to accept a few things about this whole prospect. The first thing is that I’m under an insane amount of stress, and that stress breeds an inability to focus. Even if you want to focus, and aren’t actively thinking about bills, and you know, dying alone…you’re still stressed somewhere in the back of your head. Oh anxiety and depression, you spiteful little bitches you. The second thing, that is really important to acknowledge, is the sheer amount of medication required to keep me alive. Some of which causes sleepiness, while others make it hard for me to sleep. Even the marijuana I use for nausea can make me lose focus. Of course without it I’d be throwing up, or focused on trying not to throw up, so I guess that is a matter of perspective. Fourth, I’m not eating normally. My GI motility has seriously taken a nose dive, and this makes me bloated, nauseas, and unable to provide myself with proper nutrition. Lastly is just flat out brain fog itself, as a result of the nutrition, but also because of my brain.

I have a neurological condition, and sometimes the most basic activities require more energy for me, than they would for the average human. My brain itself is also not running on all cylinders.

When my muscles are fatigued, or weak, I have to really focus on not falling over. When my balance is off, which is always, I have to deal with the same thing. I stopped to really think about my movements the other day, by watching how other people moved, and I was forced to admit that I really do walk differently, hold things differently, even sit differently. A lot of what I have to do, takes more effort, and therefore makes me more  tired. Therefore…my brain is just spent.

Brain fog itself is a problem. They don’t know what causes it, or why, but some of us folks with chronic illnesses, just lose our abilities to focus. It used to be every so often, but lately it’s more often than not. When someone tells me I’ll like a show, I have to say I’ll watch it, but then admit to myself it’ll take a special situation for me to actually watch it. I don’t want to miss things, or not enjoy it, simply because I’m working hard to focus on it. The last time I watched a show I actually enjoyed, I fell asleep during the second episode. People assume that means I’m not interested, but the reality is the opposite. I get so interested that I’m trying harder to focus, which results in my falling asleep, or losing focus. Literally can’t win!

So, now that this is done, I shall go back to trying my best to finish some homework before bed. It’s hard because I used to be the night owl who could write an essay in an evening. I don’t know how to adjust to being the student who can’t stay awake, and has to plan out her coursework meticulously in order to get things done on time.

 

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Realizing I’m Not Procrastinating…and It’s Okay

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

Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Grieve and then Grow

Revisiting Original Content – My Ex, My Friend, and of course Dating

Okay, so it’s time for a bit of a flashback Friday. Without digging back into original posts, I’ve come to realize that there has been a bit of discussion regarding my personal life, and how my personal life has contributed to my struggle with Behcet’s. After some thought I’ve decided not to delete those posts, but instead, address my situations (past and present) in a new posts.

I got married to my high school sweetheart literally 10 days after I turned 20. At the time I didn’t see red flags, nor did I think anything other than we were young, and we’d need to grow together. That isn’t quite how things turned out. Within a few days of our wedding, he was deployed with the Navy. Within a month, I was sexually assaulted over a period of about a week by a mutual friend of ours. That horror was pursued by an investigation that was marred by, frankly, a ton of disinterest. Civilian officers had other more provable cases to deal with, and military police just wanted my assailant out of the Navy. He was discharged on “unrelated” charges, but it was sort of common knowledge that they didn’t want to deal with the rape charges.

After all of this there was a disconnect between my husband and I. My PTSD from the assault formed the framework for some insidious abuse. Mentally and emotionally I was stripped down, called worthless, and even a whore, despite the fact that the assault was not my fault. Looking back, there were signs before my PTSD, that he simply didn’t think like most people I’d known. He had an entitled air about himself, like the rules and laws shouldn’t apply to him. There was grabbing, shaking, and pushing. He also liked to speed, and then slam on the brakes to scare me. Once I ended up in a shoulder sling because he slammed the breaks while I was turned begging him to stop the car.

This blog post is in no way a post to bash my ex. He has moved on with his life, and I don’t wish him harm or anything negative. The only time I think about him is when I have to stress out over our ongoing divorce (two years and counting), and when I think about his fiancé and their son. I want her and that baby, to be treated wonderfully, and I never want her to feel isolated or alone. Everyone needs someone who can help them if they need out of a bad situation, no matter how amazing your significant other may seem.

That disclaimer out of the way, there was another man I spoke about who was always referred to as my friend or “friend”. Things with that are pretty much the same. I’ve let him set the foundation for whatever it is we are, and we go with what we are collectively comfortable with. While there is a part of me that desires that stereotypical romance with hand holding, and PDA, there is the part of me that recognizes the important part of any relationship, is the care and support you provide one another. We’re best friends, and while I’d be upset if we were only friends with nothing else romantically linked to our friendship, I would be fine so long as he was happy and found someone to make him happy. I know he feels the same for me.

People tell me  constantly that I need to go on dates. They want me to see other men because they feel that two years with one man, without much traction towards official milestones is ridiculous. There are moments when I have to agree. I want to live with someone for practical reasons. I like to cook, and wipe down dust, and I also like to have someone to go to bed with, and split bills with. What I don’t want is to ask. How awkward would it be to tell someone that we function well together and should give cohabitation a shot? I could easily rent my room out, which would reduce rent at my old place, but ensure I had a place to go back to if things at the friend’s place didn’t work out. Alternatively I would my belongings into storage regardless. I would never move in with a man, and not keep my stuff in storage if there wasn’t a place for it in the home/apartment we were renting.

I need a safety net. My dating life was difficult, but that’s an understatement. Falling in love for me is a neurological state of being. Our brains release chemicals, and those chemicals cause euphoria, relaxation, happiness, and in high enough doses, we interpret it as love. Love is real…but it can be explained by science. I want to feel it, and to know that someone feels it coming from me, too. Even overwhelmed by those chemicals, I know I would still put my stuff in storage for when the chemicals wore off. Anyone can love anyone in that chemical soaked place, it’s when you’re pipes have burst, and it’s 3am, and the carpets are being destroyed, that the love you share is tested.

Even if I wanted to date…how could I? I think I’d mentioned in prior blogs how miserably my dates had been before I met my friend. Do you want to be stared at funny, and have men walk out during the appetizer round? Show up and order no food, but a Sprite. Decline the wine. Just sit there, uncomfortably, sipping on soda and making small talk. I’ve had a lot of men unexpectedly get calls that they had to go to the hospital, back home to do work emails, etc. Eventually I just tried to get them to meet me on dates that didn’t involve food or alcohol. Wasn’t easy.

Yes, my divorce still stresses me out, but I let my lawyer juggle the more stressful parts. It would be easier if I didn’t need to pay to keep insurance, but I do. As we move towards procedures that can caused upwards of $10,000 per infusion, it’s important that I keep coverage. Often times my struggle is perceived as refusal to accept the divorce. All I want is to be divorced. If I could work, I’d have signed already, but I need the support while I’m getting back on my feet.

A friend I had but may have lost, mentioned that lately I seemed to be consumed by my illness, and my special friend. Well, my illness has been flaring a lot, despite doing all that chemotherapy, and my special friend has been supportive but must be getting sick of always being the one that has to be there for me. I wanted this other friend to support me as I navigated alternative options for treatment. Instead I received harsh criticism. I’m too focused on my illness and the guy I’m seeing, I’ve lost myself.

No…I’ve found myself.

I am sick. We can sugar coated it with “spoonie” terms and phrases, but I am sick. I’ve begun compensating for deterioration in my nervous system, but people around me have noticed. Missing buttons on the elevator, falling and being unable to catch myself in time, horrible forgetfulness. Add in the sleeping for 10-12 hours at a time (at least) and you’ve got yourself one flaring chick.

It’s okay that I’m sick!

 I don’t have to be one thing. I can be sick, separated from her spouse, in an unconventional relationship based on attraction and mutual respect despite not using labels, sick, and still be me. Just because I talk about the things that I’m struggling through, doesn’t mean I’m not a student working hard on there M.S. in forensic studies. A lot of forensic jobs happened to be part-time, so maybe I can push to try and get my treatments so I have energy to look into the job market.

If someone where to ask me if I were single. I’d say technically yes. They’d as why, and I’d say I have a friend with benefits, but that it’s sort of a complicated version of that fad. He’s my best friend, and the rest is just bonus add ons. If someone were to ask me out, I’d politely say that I’m not in a place where dating is a good idea. My health needs to be more stable so that I don’t back out of too many events.

My prior relationship was a huge source of stress. Having that weight lifted through this divorce, has been amazing. My body is still recovering from chemo, and new meds, but the less stress I experience, the better. Hopefully the divorce with finalize soon, for both of our sakes!

I’m exhausted, so this post may be a little all over the place. I meant no disrespect to my ex, his wife, and his child. I honestly just want the best for the family they’ve created. I chose not to have children with my ex. We were like oil and water, we didn’t mix, in fact, we were more like thin paper and a burning match. We would come together and ignite, eventually destroying whichever one of us drew the short straw, and wound up as the paper doll.

So to recap:

  • Ex is still in play because the divorce isn’t over
  • Friend is “friend” is best friend, and regardless of where life takes me, he’ll always be special to me
  • Dating around isn’t doable because my stomach and neurological issues make most dates impossible to plan
  • I don’t hate my ex. I may hate some of the actions and words that he’s engaged in, but I don’t hate him as a human being. He’s moved on with his life, and I just wish the best for his fiancé and child

 

Someone needs to invent a Tinder for people with disabilities and chronic illnesses…but we’d have to weed out the folks that have a fetish for that sort of thing.

Revisiting Original Content – My Ex, My Friend, and of course Dating

Happy Thanksgiving…Send Sorbet and Hugs

I was actually excited for Thanksgiving. Even though I can’t eat much with the gastroparesis and intestinal dysmotility, I was going to be spending time with a friend I haven’t really had a chance to spend time with in years. Then Behcet’s decided it would be a good time to struggle with horrible headaches. I had a ride to LA, but given that it would take 2-3 hours without traffic, or just normal LA traffic, I knew it wouldn’t be the best decision to go. I pushed myself for the musical, then last weekend when another friend came in from out of town. My body is showing the effects.

It’s frustrating. I would have rather spent Thanksgiving with my friend in LA, but because someone else had non-refundable tickets to visit last weekend, what I’d have preferred became unobtainable. If I’d utilized the wheelchair option at the zoo, I likely would be feeling much better right now. Don’t get me wrong, I’d still be stuck in this flare, but maybe it wouldn’t be this bad. Maybe going up to LA would have been the thing that pushed my symptoms over the edge.

Thanksgiving has always been one of my least favorite holidays, anyhow. My stomach issues have been in play for quite some time. Any holiday with a focus on food, is going t be low on my list of preferred holidays. Still, I wanted to see my friend. Symptoms wise, the headaches have gotten worse. I know I need IV steroids, nausea meds, Benadryl, and something else that always forget about. The glorious migraine cocktail, just tweaked a bit. We are 100% sure that my headaches are vascular spasm related, but nothing over the counter works on them. The headaches were bad enough…but then the oral symptoms arose.

I have GI ulcers. I know I do, because of the situation with my bowel movements. They’re infrequent because of the motility issues…but I do have a whole lot of scabbing and skin coming out. Normal people would probably panic, but for me? I’m just glad there isn’t too much blood. To make things extra interesting, I developed a yeast infection. I have medication for it just always on hand, because the infections used to be so frequent. Of course the fun is figuring out what is ulcer related, what is yeast related, and whether it really matters because you’re already taking all the meds you can anyhow…

Then last night, there was some fun. I’ve had some mouth pain and swelling, which I attributed to a few ulcers, and the likelihood that I was brewing up a few more. As the pain got worse, I focused on my chronic state of dehydration. Maybe I was in pain because my mouth kept getting so dry. Last night I ate some gluten free crust with just feta on it, nothing else. I followed that up with a Pedialyte ice pop. I’m eating this ice pop, when I start to wonder two things: the first was, “why does this ice pop make my mouth burn?” and the second was, “what is that taste?”

It turns out my mouth was bleeding. Not in a few spots…just literally all over blood, oozing out of what must have been super tiny blood vessels. 

Yeah. Thanksgiving is hard when you have slow or even no motility in your stomach and intestines. It’s hard when you have GI ulcerations. It’s hard when you aren’t allowed to drive, so you can’t be at all the fun events. Thanksgiving is impossible when your mouth is on fire, and actively bleeding whenever you eat.

All the doctor’s are gone for the weekend, so I’m going to check out urgent care tomorrow if things get worse. The headache needs a cocktail I can only get in the ER, but I’m borderline functional right now. I’d rather sort the headache out at home, rather than expose myself to the ER germ factor. My mouth is a whole other story. I’ll be making some Jell-o this evening, and looking into getting some liquid food options. The most likely culprit is a combination of arteritis, oral ulcers, and thrush. With the seriousness of the yeast infection I have, I wouldn’t be shocked to find yeast was also hanging out in my mouth. It’s gross. It’s painful. It’s embarrassing.

Needing a hug boils down to the reality I’m living in. My dog needs shots, I’m running out of items to sell, and I can’t afford to get textbooks, or even feed myself, if the money I should be getting for my book stipend, food stamps, and disability, never comes. I want to work. That’s the thing people don’t seem to understand. I apply for part-time jobs that I could theoretically do via a wheelchair…but there is a pretty major limit when it comes to the availability of such jobs. My education, my prior experience, it just doesn’t lead to jobs that I can do in my current shape.

I see everyone around me being normal, and I get so frustrated that I can’t just go and be normal, too. This is one of those days where I want to kick, scream, and cry. My body is sick, and aside from brain fog, my mind isn’t. Sure, I have neurological issues, but my mental abilities don’t match with what my body can do. Hopefully the doctors will be willing to push up my IVIG plan. It’s a long shot as it is, but with the symptoms lingering around, I’m willing to take all of the shots available.

Happy Thanksgiving…Send Sorbet and Hugs

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

The Financial Impact of Chronic Illness

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

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

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

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

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

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

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

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

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

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

The Financial Impact of Chronic Illness