Governmental Nonsense and Way Too Many Tears

Getting affordable insurance is still insanely hard if you’re chronically ill and unable to work. Part of the problem is that getting disability is hard. If you have income, even if that income isn’t from working, and even if it doesn’t cover all of your bills, you’re sort of shuffled to the back of the line (or so it feels). Disability would qualify me for MediCal which is what I’m trying to get, but I’m $200 over the limit, and that’s enough for them. It doesn’t matter that I can’t pay my other bills, I’m over the limit.

They actually just suggested I decrease my alimony so that I would qualify. Are you kidding me? I’ve already expressed the reality that if my roommate didn’t cover so many of my bills, I’d be homeless already. 

I swallowed my pride and got the information for a charity that helps, and I’m hoping they can provide some help so I can keep insurance for a few more months at the very least.  I also need to talk to my ex at some point, and inform him that I’m changing banks. I emailed him but I don’t know which email he actually uses to be honest. (He has several from when he was cheating, that he still has activated, so it’s impossible to really know what is going on with that. I suppose I’ll have to text him, too.

Funny how part of the divorce agreement was me making sure he knew where I was at all times (phone, email, address), but I don’t get any of the same luxuries.

It’s odd being sick. I took an unexpected 3+ hour nap after trying to write this earlier, because I’d sobbed myself into incoherence. There is a hopelessness once you’re in the disability system. You’re lied to by the ease with which temporary disability can be obtained. When you realize your disability isn’t temporary, and apply for permanent disability, you’re struck with the truth. It takes forever, and the details don’t often make sense.

Now the best way to get MediCal, is to be officially disabled, but hey, fun fact, that process takes, on average FOUR years.

You want less homeless folks San Diego? Help get them enrolled in disability, of some sort, because many have mental health issues or physical issues that, if fixed, would allow them to work. Additionally, let’s get more drug rehabilitation facilities for those who want or need them, because that will also help. And build some affordable housing!

These programs that exist to help, they want you making less than around $1300 a month, which is a glorious theory, but completely unreasonable for San Diego. Now it’s 2am and I’m debating how peaceful my sleep will honestly be, given all the crying I did today (and that unbelievably ridiculous nap. People were actually worried because I just crashed so hard. I think I may have swapped my indica heavy and sativa heavy pens, because OOF.

And before people judge, medical marijuana is literally the only thing that stops the vomiting sometimes. If we find out my GI transit time is slow, but not so slow it can’t be managed, there is a chance I’ll be given IV access for nausea drugs. The only issue is that means life with a needle in my chest. I’ll also likely be running fluids (if I have a say) because drinking less means I can try and eat more, and more of what’s on my nutritional plan, but we will see.

Let’s hope tomorrow (well today), brings less tear inducing drama. 

 

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Governmental Nonsense and Way Too Many Tears

Flare City – Autoimmune Blister and Staph Infection

It’s no secret that I’ve been stuck in a pretty constant flare that only seems to be getting worse. The only option I have is to wait for my insurance to approve IVIG. We’ve done one steroid dose pack and I’m preparing for a second. To make things even more fun, my rheumatologist is out on maternity leave, and my insurance company was taken over by another company (it’s a contract deal). The transition hasn’t been smooth, to the point where I can’t even call and get a hold of someone at my insurance company…and I’ve even trying for six weeks.

Yes folks, you read that properly, I haven’t been able to speak to a human being at my insurance company for over six weeks.

While this may annoy the average 31-year-old insured individual, it’s definitely not the best when you’re in the middle of complex insurance approval processes. My chair is coming on Monday (if I can work out a payment plan), but IVIG still remains in limbo. My rheumatologist’s replacement suggested I switch to another practice, something that was discussed a year ago but discarded as I prefer my rheumatologist, and the university hospital nearby has a horrid chief of rheumatology (or at least did a year ago). Point is, I like my rheumatologist, she just happened to have a baby the same time period where my insurance company went to shit.

I was dealing with the increased gastroparesis symptoms, the GI bleeding, the fatigue, all of it…and then something new for me happened. I woke up last weekend, with a blister on my hand. It was just a little thing, but over the course of the day it got worse and worse. There was speculation on my part, and my friends’ parts, over what caused this blister. The best we could come up with is that my hot water bottle somehow burned me, but I didn’t wake up, and the bottle doesn’t have a leak. Moreover, I haven’t ever had an issue with it. So this blister just keeps getting worse, and eventually it takes over my entire knuckle and is working down into my hand.

I’m being eaten by a blister of unknown origin.

My friend Mike is a chef, and he informs me that I need to ignore everyone else’s advice and just pop it, throw some antibacterial ointment on it, and go about my life. I call him stupid until the thing begins to get so big I don’t have much of a choice. I was not having that thing pop in my sleep, and realistically I’m too clumsy not to bump it on something and randomly (and disgustingly) pop it unexpectedly.

Gross.

I pop it, and it’s not really anything special. I throw some bacitracin on it, and call it a day. The next day it’s tender, but not abnormal, and I keep it open so it can heal, but I’m careful to keep it clean, or so I thought. The next few days are a blur because I wasn’t feeling well in general, and I had an allergist appointment. What I do remember is looking at the spot where the blister had been, and being in denial that it was infected…until the day I went to the allergist, when I realized it was scabbing over pus filled portions, and literally creating an abscess.

Double gross.

I went from my allergist to my primary care doctor, who promptly told me I was correct, and it was definitely infected. He also informed me that autoimmune blistering is an actual thing. My body literally attacked the layers of my skin, creating a blister because it just destroyed a section on my hand. He gave me a prescription for antibiotics, but by the next day it was worse. Way worse. The night I’d gotten antibiotics it had worsened to the point where I had a thin layer of skin covering what was undoubtedly my tendon.

You shouldn’t be able to watch your tendons move, and while it was disturbing, I will admit it was kind of cool. Still, I don’t recommend it.

My doctor calls after I take another dose of the antibiotics that were already making me feel like total hell. Apparently I have a multi-drug resistant staph-infection, and while it isn’t MRSA, it doesn’t matter, because I’m allergic to all drugs ending in -cillin. Yay. We’ve established it’s getting rapidly worse, because I’m taking a boatload of immune suppressing drugs, even though they’re not doing a great job at treating my Behcet’s anyhow. Fantastic universe. So I’m sent to the ER.

The ER wasn’t too busy because of the time of day I went in. They ended up wanting an MRI because there was a chance my joint and tendon were infected, but thankfully they weren’t. That would have meant being admitted and going on IV drugs for a few days. I was given an IV push of an antibiotic (but honestly can’t remember the name), and send home on Keflex. I hate Keflex because of the nausea it  causes, but I don’t have much of a choice because of my allergies. Another issue I have with Keflex is kind of weird. It makes me really drowsy, and actually gives me a fever. Not a high fever, but around 100-101, which also makes me feel crappy.

If that weren’t enough, I’ve been dealing with stress over finances, namely insurance funds, and coming up with the money for moving and medical equipment. Life should be easier when I have less rent to pay, but saving up the money to pay insurance installments three months at a time, is going to be really hard. This rough patch also doesn’t help.

Can we address the reality that my body is flaring, and there is a decent chance that the stress made it worse…and my body blistered itself. 

I’m still sort of in awe that a body is capable of doing something like that. I think most of us who deal with autoimmune issues, have moments where we’re shocked at the destructive power of our own bodies. I’ve witnessed countless things, including losing the ability to move because of hyperactive reflexes, but somehow this one blister was more intense for me. I think there was something about being able to actually see with my eyes what my body was capable of. It was as though I was in some long cold war, and then someone dropped the first bomb. I was aware I was in a flare, I knew what was going on inside of my body, but seeing it externally was a whole new game. I’ve got an oral ulcer, and a few other external signs I’m flaring, but there was something about a blister that just felt different.

My roommate has reminded me to relax, that he’s handling the movers and the moving fees, but I’ve never had to rely so much on others, and it’s definitely taking it’s toll. For now I guess it’s all I can do. IVIG can’t come fast enough.

Flare City – Autoimmune Blister and Staph Infection

Changing Your Expectations and Being Okay with It

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

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

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

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

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

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

And that’s okay.

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

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

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

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

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

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

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

Changing Your Expectations and Being Okay with It

First Round of IV Vitamins, and the Unemployment/Disability Situation

Yesterday, on the 23rd, I got my first infusion of fluids vitamins, and amino acids. It wasn’t pleasant, but mostly because I was still so sick going into the appointment. Basically I’m still having bleeding issues, most likely from my colon, and lower intestines. I’m also having a lot of nausea courtesy of the gastroparesis. I find myself in this horrible situation where, if my stomach and upper intestines empty, they hit the lower intestines where the ulcerations are. So the nausea fades momentarily, only to return as the pain of the food and drink moving through me hits the ulcers. The doctors are fairly sure some of the ulcers were deep, and created blood clot like scabs that are coming off when I feel like I have to go to the bathroom. It’s super fun…

Anyhow, I pulled myself up off the bathroom floor (literally) and went in for the infusion. I was pleasantly surprised when the nurse hit a vein on the first try. (I had forced myself to drink and keep down liquids, though it had left me violently nauseated.) She warned me that the infusion would taste funny, like a Flintstone vitamin. Turns out it tasted exactly like one, but not the fun fruity part…the gross after taste part. This would have been manageable had I brought mints or something, but I hadn’t. It also would have been manageable if I weren’t already trying to avoid throwing up. Then there was the woman who seemed determined to talk to me.

I am pale, obviously in pain, and she just kept talking…

I’m not sure what we talked about. I grunted responses periodically, but spent most of the time checking out her adorable dog. Then something fun happened. About halfway through the bag I thought I was dying. I felt hot flashes, the nausea peaked, and I was pretty convinced I was going to faint or have a seizure. Then, a little while later, it all went away. I told myself it was just the Zofran I had taken prior to the infusion…but I kept feeling less horrendous. Now, don’t get me wrong, the damn thing still tasted awful, but I didn’t feel as awful. 3/4 of the way through the infusion, I was actually sitting up in the chair instead of half curled over. As it finished I had to admit, I felt a lot better, just from the fluids. The vitamins were much needed, but I am sure they haven’t done much just yet. The nurses and nutritionist had all said it would take several regular infusions before I felt a lasting benefit from the vitamins and amino acids. As I’m getting up to leave, talkative lady addresses me and the nurse.

“You look less dead.” Then to the nurse, “Doesn’t she look a lot less dead?”

I mean I’d rather look totally alive, but I’ll take less dead I suppose. My stomach still hasn’t been doing well, but that’s just the nature of the situation. My upper GI doesn’t want to move at all, while the lower GI is a mess of ulcerations and blood. Happy holidays I suppose.

Hopefully I can get an update on my wheelchair after the holiday. I’m bummed that I’ll have to start paying copayments and whatnot, given my insurance year will begin again, but I’m hoping I won’t have to pay it all at once with the wheelchair. That would definitely require me to sell everything I own. I’m also excited to start IVIG. I’m crossing my fingers for some good news regarding my disability as well.

For a long time I was opposed to the idea of disability. I want to work. Not working leaves me unfulfilled. It isn’t even about finances, though I’m definitely struggling financially. Working has always given me a sense of pride and purpose. Even the smallest job made me feel like I was contributing in some way. Without working I feel sort of useless. I know I couldn’t work the way things are right now. As much as I may want to work, I just don’t know day to day how I’ll feel. Plus there are the medical treatments. We’re talking about IV infusions 2x per week, if insurance will cover it, then IVIG which will be given over a period of two days. From what I’ve read IVIG is done every 4-6 weeks. If it lines up with IV nutrition appointments, I could be spending 4 out of 5 days in medical offices one week per month. I’d still be spending two days per week in medical offices anyhow. Once we’re able, we’ll wean me to an IV per week, but ultimately we can’t go lower than that since I really need the fluids.

This is the thing people don’t seem to grasp about disability, and those of us who are chronically ill. We fight hard to get to a baseline that is somewhat close to that of a healthy person. Most of us won’t ever feel as healthy as a healthy person, but we can fight hard to become functional enough to basically pass as healthy. Getting to that point takes a lot of effort and time though. In my instance we’re talking several IV treatments, a ton of oral medications, and carefully orchestrated drinks and snacks. Even with all of that, I could wake up and feel miserable. If you look at my IV schedule alone, it become a scheduling nightmare. Toss in the fact my body doesn’t operate well in the mornings, and that I could randomly have a few bad days without warning, and you get someone who really doesn’t have the ability to work right now.

I am not defined by my illness, however, I am limited by it. For a long time I lied to myself, and swore that Behcet’s and the things it has caused like gastroparesis and autonomic neuropathy, would never limit me. I was determined to live the life I wanted, despite the symptoms. As I pushed myself, I got sicker and sicker. Then denial kicked in. I told myself that I was in a flare, and that once the flare was over, I could get back to living a normal life. Denial isn’t helpful. I hit a point where I had to acknowledge that some of the things I wanted to do, I couldn’t do, because of my chronic illnesses, and that’s okay.

Yes, you read that right folks, it’s okay to accept that your disease limits you…as long as you don’t let it define the entirety of your being.

I am chronically ill. I may have to use my wheelchair at times. I cannot work. My diet is an absolute wreck, and even when I do follow the doctor’s advice, I can’t always succeed. The ER team knows me. Professors have to allow me extra time should I require it. These are all facts of life for me. I accept it, and I pivot because of it.

Find something else that you love, and know that limitations are not forever, but even the ones that do stick around don’t change who you are as a person. 

Life is what it is, and sometimes we can’t wrap our heads around having to change our plans, but we also can find ourselves trying something new that we hadn’t even thought of before. We find new passions, new paths, and we go with it.

So go with it. 

First Round of IV Vitamins, and the Unemployment/Disability Situation

Operation Relocation?

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

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

Inhale.

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

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

People can tell I’m faking.

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

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

Okay, enough about me.

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

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

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

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

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

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

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

Operation Relocation?

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