Changing Your Expectations and Being Okay with It

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

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

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

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

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

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

And that’s okay.

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

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

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

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

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

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

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

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Changing Your Expectations and Being Okay with It

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?

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

That is a literal question I asked someone because I couldn’t remember the word “bread”. Brain fog isn’t anything new for me, but the increase in frequency, and severity of the lapses, has started to concern me. My professor thinks I’m slacking because I had things in at the last second, even when it’s something I already had an extension for. I reassured her that I wasn’t procrastinating. For me to actually retain even a few bits of the material, I need to take my time working on the subject matter. If I miss a lecture, which I have, I don’t just play it and write up a generalized summary to meet the requirements. I listen to a few minutes, pause to take notes, then continue on with the lecture.

Notes on a  two hour lecture typically takes me 6-8 hours.

I need those notes for tests, only in this class, test times don’t really allow for you to dig stuff up in notes or on the books. (I take classes online since I can’t make it to campus anymore.) Another reason for taking accurate notes, is that I love the material. It was different in classes I found incredibly boring. It was material I really wouldn’t use again, and I had no interest. In this class I am interested, it’s just also complex, and contains a lot of minute details. If I can’t remember that bread is what you use to make toast, how am I supposed to grasp the ridge counting system and pattern equations you use to fill out a fingerprint card? (Important side note…I had to take a few minutes to remember the word equation. Sometimes I’ll get annoyed and just look up key words I know related to the word I’m forgetting, but this time I’m proud I figured it out eventually.)

My brain and body are screaming at me to just sleep. I’ve gone from embarrassment of needing a wheelchair, to impatience regarding the length of time it will take to get one. I’m still worried I’ll end up single forever, but I also understand that right now the key is staying alive and protecting my brain from my body’s overly active and very confused immune system.

Most of us who are chronically ill, have had someone judge us as lazy, or we’ve been labeled as procrastinators. We’ve seen the eye rolls, or lost friends because we ran late to often, or cancelled plans.

If I have to be somewhere at 6pm, I start getting ready around 3pm, because I know I’ll need breaks. I also go to bed early, and sleep in, the night before.  If I’m sore, I shower more than once, and take baths to get my muscles as relaxed as possible. I longingly will eye my high heeled shoes, before grabbing my sensible flats. Picking an outfit depends on how long the event will be, and how swollen my various body parts are. Since most of my swelling right now is in my lower abdomen, I have to plan for how that looks. Shape wear?  No way. The pain that results from attempting to contain a bulge that is actually my intestines, colon, ulcers, and of course stool, is beyond explanation.

Last night I saw a movie. It was amazing to go out, but the process began the day before. I tried to be cautious about what I ate, as I usually am, but because I’d eaten a bit more than my intestines could handle, I had a very obvious swelling of my lower abdomen. No worries, we can just kind of layer two tops and hope that it isn’t as noticeable. Makeup? Yeah, that’s fun when you’re arms and legs are weak. I need to get a full length mirror so I can sit and do it easier. Right now I have a rigged up way of doing it that allows me to sit in my bathroom sink so I can use the medicine cabinet mirror to do my makeup.

No, I am not joking.

Forget cleaning up any mess that was made while doing my makeup and hair, if I clean it up, I’ll be too tired, and I was already running 15 minutes late. Now the whole trying to get to my friends house. He’s only like a 5-10 minute walk away, and the weather is nice, but I know that the walk would drain me. It used to be something I wouldn’t think twice about. My part of the city has a free ride electric car that goes around, but alas, there were no available drivers. Plan B was a Lyft Line, but the wait was 10+ minutes, and by this point I am so tired, I really need to take some Zofran. Shift to a regular Lyft which costs more, but doesn’t involve a wait.

So I get in the Lyft, and I’m regretting my large purse, but whatever, I can unload things once I get to his place. As much as  I want to see the movie, I’m considering just going back inside and going to bed, and it’s only like 4pm.

This is where things get really important: I didn’t give up.

I relaxed a bit at his place, he got food (I watched him eat it because that’s what I do now haha), and he was nice and got us a Lyft to the movie theater. Usually it would have been a walk, but I wanted to enjoy the movie. The mall had several flights of stairs that I needed to climb to get up to the theater. The elevator on the side we were on was broken. (Of course…) So we go up stairs, stairs I’ve climbed dozens of times. My legs hurt, parts go numb, I’m starting to wonder if I should just sit down, but I don’t want to make a scene. I start moving slower and slower, but eventually we get to the top. I’m in pain, but we’re there. After enjoying the movie, I remind myself that I need to make it back to see Star Wars, but that perhaps I’ll go alone so I can use the stairs or my walker.

After the movie I did a really dumb thing. We were walking around looking for a specific shop, but we couldn’t find it. We walked and walked and eventually we were almost back at his apartment. So he asked if I was cool with just finishing the walk and I said I was.

But I wasn’t.

Today, I am paying a price. Brain fog is extremely intense, the urge to just keep sleeping is preventing me from doing a decent job on my homework. Have you ever worked out really hard, and you have really sore muscles the next day, where even lifting your spoon is painful? That’s where I’m at. I was having muscle and joint pain before, but pushing myself beyond my limits was just plain stupid.

Lesson: regardless of what you think other people with think of you for using assistive devices, or refusing to walk when the distance is considered walkable, listen to your logical brain. 

I could go to bed right now, and it’s only 5:40pm. I have homework to do, so I can’t just sleep. I could take a bath to ease the pain, but eventually I’ll have to get out. Plus the hot water is a dangerous scenario with my autonomic nervous system being such a bastard lately. Plan is to take a lot of homework breaks, think as much as I can about the homework topics, and if I really need to sleep, then I will let my body sleep.

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

So Much Sleep

Every single doctor wants to put me on a steroid taper. I was just on a steroid taper. The issue is that the dose of steroids I need to feel relief, is a whole lot higher than what one can maintain long term. The other issue is that it’s just a stop gap measure. We can keep decreasing flare symptoms for a few days at a time, but we aren’t really doing anything for me overall.

Tomorrow I’ll be calling my rheumatologist, but she’s pretty set on me waiting until January to move forward with IVIG. One of the biggest struggles lately has been how much I’m sleeping! Literally fell asleep in the bathroom because I thought I was going to throw up, didn’t, and ended up waking up on the floor. (Now that I’m thinking about it, my jaw hurts, so it is possible I fainted.) Still, I literally slept for at least 12 hours last night. I got up, made it to the couch, and somehow fell asleep again for a couple of hours. Walked my friend’s foster dog, hung out with the friend for a bit, then somehow managed to fall asleep again. Not sure for how long, at least an hour, maybe longer, but my friend woke me up and asked if I was okay.

My memory has been horrid, and I want to watch shows, but I keep falling asleep. At this point I just put things on that I’ve seen before.

One amusing result was me spending several hours convinced my phone was broken. I kept lowering the volume, and was convinced it would stop just before going to mute. I reset my phone. I updated everything. Then I remembered, to put it on mute, I had to use the little toggle button on the side.

I mute my phone regularly…but today, I forgot how to mute my phone. 

While a lot of people would find this alarming, I just a accept it for what it is. I am in a flare, and all my symptoms are heightened because of it. New symptoms are related to old symptoms, and even fully new symptoms seem to be minor compared to established symptoms.

If you have a chronic illness, and you need more sleep than usual, talk to your doctor, and then sleep! 

For a long time I had a lot of shame about how much sleep I needed just to barely function, but now I (for the most part) accept it. Yes, there are days when it aggravates me, but right now I’m just embracing it. Normally my nebulizer would make me jittery, but it didn’t, so that makes me happy! I also don’t explain it to people, at least not in an apologetic way. My automatic response to, “Are you okay,” has become to just say that I am, or even ask why they’re asking. I don’t even think twice because I’ve just accepted how things are…for now.

I will not give up hope. I will have a better quality of life. Maybe I’ll never be in remission, but I will achieve things in this life.

You have a purpose, even if you’re ill…you just have to find it. I’m still digging around for mine, but I will find it. Right now I’m just trying to share my story, and make people who struggle with their illnesses, hopeful.

So Much Sleep

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.

 

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