Chronic Illness is Not Enviable or “Cool”, And Gastroparesis is NOT an Eating Disorder

A few years back, a seemingly healthy friend of mine, expressed jealousy over the fact that I could have my dog in apartments that were, otherwise, not pet friendly. I explained that he had been an emotional support animal, before I realized he could sense my seizures and heart rate changes. At that point he was trained to be both a medical alert dog, as well as a psychiatric service dog. (Back then I was struggling with some major side effects from PTSD. Today they’re under control, though I do still appreciate my dogs waking me up if I do have a night terror.)

She would, eventually, announce that she had PTSD as well, and promptly run out and adopt a “service dog” of her own. All of it was whatever, until she started trying to convince folks with very little, or even no, trauma, that they too, could have PTSD. Ever feel anxious in social situations? You probably have PTSD. It was absurd, and I told her as much. It was suddenly this popular thing. Emotional support animals were getting scrutinized, but psychiatric service dogs became a loophole. They’re totally legitimate, but seem to be easier for some folks to sneak through the system, which is just sad.

The breaking point came when my struggles with gastroparesis became extreme. This was prior to chemotherapy, when I was really thin. My frailness, something that prevented me from going out and enjoying life, became this enviable thing. Someone with an eating disorder clung to it, and decided that they could eat whatever they’d like, vomit, blame it on gastroparesis, and gain sympathy.

It worked.

I still didn’t really think much about it at the time, or even now, because we all have our own battles. What I did think about, and what I still become aggravated with, is this idea that gastroparesis is an eating disorder. After years of being accused of anorexia or bulimia, finding myself in that viewfinder again, was beyond aggravating. I wanted to eat, desperately, and I wanted to drink even more, but I simply couldn’t overcome the nausea. It wasn’t worth eating just to be sick. Some people with GP, will eat, and get sick, either because they want to attempt to eat, or they miss the taste of food, and a small percent I’m sure, do have true eating disorders on top of the GP. Eating disorders can also cause GP, but it can be reversible in some cases.

I am not in the reversible category, and I need people to accept that.

I have good days and bad days with gastroparesis, but it never goes away. A good day can actually cause a string of bad days if I’m not fully aware of what I’m consuming. My behavior may look eating disorder like, but the reality is I can’t digest as much as I may want. A good day means I’m not as nauseas, or I may even have an increase of collateral blood flow, letting me digest…but my GP doesn’t go away.

There is a condition called median arcuate ligament syndrome, or MALS. With MALS, the arcuate ligament runs in an odd manner, and causes impingement of the celiac artery. This results in a lack of blood flow to the stomach, liver, and some other stuff in that area. It can also cause compression of nerves. In a nutshell, you get abdominal pain, nausea, vomiting, lack of appetite, and all that fun stuff. Surgery helps some patients, but not all patients, and the theory behind this statistic is that patients who have nerve damage, will have continued pain.

I don’t have MALS…but I do have significant celiac artery stenosis. They can’t stent it, they don’t know what causes it, and it’s significant enough, that spasms from my vasculitis, could cause it to close off completely, worsening the pain, and gastroparesis episodes.

Except of course, doctors don’t love that conversation, because having your celiac artery narrowed to about 90%, like mine is, when you don’t have atherosclerosis, is weird. Also, even with atherosclerosis, the celiac artery would be an odd point of discovery. Some doctors agree, my celiac artery is the cause of the gastroparesis and other upper GI issues, especially when combined with my chronic gastritis. Other doctors refuse to even approach the subject. When MALS is understood, accepted, and still debated, being that one random patient with a bum celiac artery, tends to sort of become something that your doctors ignore.

I won’t wake up one day and be able to eat normally. I always have pain when I eat…always. Even friends who get excited to see me eat a meal, don’t understand the effort. I will have pain. I will have nausea. I may actually need to sit a certain way, use a hot pack, something, to alleviate the discomfort. Once we hit my intestines it’s really a toss up as to how that will go. There is always some pain due to dehydration, and the stool softeners and laxatives I’m required to take. Some sections don’t always work. Other sections are sometimes ulcered. It’s a fun time down there.

So when someone tells me that I will “heal” my gut as I move through my “eating disorder” like they did, I want to scream. 

Being sick is not something that gets you the kind of attention you might think you’ll get. I want love. I want to build a career and a life. Spending time in infusion chairs, ERs, doctors’ offices, it’s all just a lot of stuff that gets in the way of living life. Yeah, my wheelchair helps me get around, but now that I don’t live downtown, where will I go? You can’t put it in a car, so it leaves me stranded unless I take the bus, something I’ve yet to attempt.

I may start a day feeling good, go to an event, and end up with legs that won’t work. It’s funny how the people who seem to be disability envious, who suddenly find themselves with the same conditions, only have issues when they’re home alone, or want to hang out with friends who seem to have plans that they don’t have the ability to participate in for some reason other than their health. If you always feel healthy enough for parties, concerts, and other leisure activities, but suddenly seem violently ill to avoid obligations, or garner attention, I’m going to question your sincerity. I’m not talking about a recovery day (or week) because I know that one good day for me, when pushed to far, can definitely screw me up. It’s the people who seem to cling to the fringes of the disabled or “spoonie” communities, join somehow, but always seem to have luck when it comes to when their condition will flare up.

Today is a hard day, because I find myself bitter. I want this life I cannot have. This isn’t something positive thinking can fix. Most of the time I do accept my circumstances, and I work to find things that can make me just as happy, if not happier, than my original plans. It doesn’t mean I don’t get angry sometimes. When someone gleefully jumps into the sick people community, only to have oddly good luck in terms of when they’re actually sick, and when they’re not, I struggle to bite my tongue.

Be interested, be included, but don’t lie. Even a small illness deserves support. Hell, all people deserve support. You don’t have to fake being seriously ill to get it.

 

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Chronic Illness is Not Enviable or “Cool”, And Gastroparesis is NOT an Eating Disorder

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

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?

It Will Be Fine – Hugs Toilet

After a few weeks of waiting impatient, my GI appointment finally came. Unfortunately the doctor told me that there wasn’t anything he could do. Apparently there are GI motility specialists, and this doctor suggested that I see a specific GI motility doctor. Of course, that meant my appointment today didn’t offer much. On top of that, the motility doctor won’t see me until I have a referral from a regular gastroenterologist. The good news was that I have seen the GI in that practice  before…the bad news is that I never had the follow up testing because I started chemotherapy.

The GI doctor can’t see me until the end of February…and then I’d need to have two tests done before they would even refer me to the motility specialist. 

Understandably I was discouraged. The receptionist was super sweet, and they’ve phoned in a symptoms consult with a nurse so that they can at least attempt to help me manage the nausea, heartburn, and dehydration. I’ve explained that I don’t vomit because I fight it and refuse to eat or drink. They have me on a cancellation list so I can hopefully see the doctor sooner.

The GI doctor I saw made it clear that, despite what the wait may end up being to see the motility doctor, not to get my hopes up. The treatment options for gastroparesis are slim, and of the drug options, I’m not a candidate for two of the three. The antibiotic option isn’t a good plan due to allergies. The second drug causes neurological issues, and I already have neurological issues, so it’s not an option for me. The third drug works great…but isn’t FDA approved for use in the U.S. yet.

There was mention of the ability to buy it online from Mexico and Canada…

I had asked about IV fluid therapy, but he wasn’t comfortable starting me on that since they wouldn’t be treating me for gastroparesis. I asked if they could treat me for the dehydration caused by my nausea and appetite…and he said they could have if it weren’t for the fact that the cause was gastroparesis.

Yes, without a diagnosis, I’d be given fluids and medications. Since we know what is wrong, I can’t get treatment…unless it’s from a doctor who is a specialist in that diagnosis.

For years I didn’t have a diagnosis for my Behcet’s. I was treated solely based on my symptoms. Now I’m in a situation where the cause is known…but I can’t get treatment. I was given a medication for severe constipation because, to be blunt, I haven’t had a normal bowel movement in months. I take enough over the counter laxatives to treat a herd of elephants, and yet I’m still…well…stuck. There is no guarantee that the medication they gave me will work, either, but they seem to think it’s worth a shot.

Rheumatology still hasn’t said anything about moving up my IVIG trial start date…which would be fine, but they won’t send me for IV fluids either. My sole option is to do it on my own, which my rheumatologist is okay with (and endorses emphatically)…but yeah, I need to find my friend’s doctor who does it. At least insurance will cover it, but it’s starting to feel shady.

I guess the lesson is, as long as your doctor knows that you’re doing certain things to manage your disorders, it’s worth trying ones that aren’t exactly conventional.

Today was definitely not a win, but it wasn’t really a loss either. I’m still lonely, and nauseas, but hopefully I can at least begin to move towards things to help me feel physically better. The emotional work is a bit harder, but still so worth it.

It Will Be Fine – Hugs Toilet

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

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

Failure Isn’t Always Failure

Sometimes I do stupid things…like apply for a job and accept an interview, even though I feel like utter garbage. I told myself that the hours, 12pm-4pm, and the fact that it was doable in a wheelchair, meant I could totally handle the position. Friends got behind me, encouraging me to give the interview my everything. These friends weren’t aware of the extent of my relapse, at least not what is going on internally. They know I’m nauseas, sleepy, sore, and that I can’t eat much. They also know that my balance has been off, and that I have the shakes. What they haven’t known is how much pain I’m in, that the shakes are more than just the shakes, and that my situation is expected to just keep getting worse. I cancelled the interview for today, by calling in and saying I was sick, and  moved the interview to next Thursday, because I have rheumatology next Tuesday.

I felt like the biggest failure.

All these people from here and back east, were cheering me on, and telling me to try. I did try, but I just couldn’t pull myself together. I went to take a shower, and each step was so painful. My colon definitely has ulcers in it, and the fact that I’m not going to the bathroom isn’t helping matters. Gastroparesis is a gnarly thing, and I have a weird form of it (of course). I don’t just have issues with getting food from my stomach, into the rest of the GI tract, I have issues with my entire GI tract. I’ve gone to the ER with bad abdominal pain, knowing I was constipated, and ended up with baffled doctors because I had no GI sounds whatsoever. Your stomach and intestines make noises, even when you’re not hungry or eating something. You can’t always hear them, but with a stethoscope you really should. They medicated the hell out of me, and barely got a gurgle. I ended up refusing the enema because it’s super uncomfortable, and doing it at home is much easier than being given one in the ER. (I’d also had a really traumatic experience with a prior enema because the medical staff didn’t do imaging first, and I bled severely. I am on the fast track to enema town right now, and I am doing my best to avoid it.

The other issue for today is just the tremors and weakness. I saw my neurologist yesterday, and he was definitely concerned. The last time I had a flare that progressed to neurological symptoms, I ended up incapacitated in the hospital, with the possibility of being placed in a skilled nursing facility. I couldn’t feed myself because of the shaking, I couldn’t walk at all. I couldn’t even be touched without my body locking up and spasming. Yesterday my neurologist said that he felt I needed to be back in chemotherapy, but I’m not sure that is an option. For one, it’s hard on the kidneys, so they limit the number of sessions you can get. The other thing is, it worked, but only during the sessions, and for a few months after. We know that you can’t stay on chemotherapy for the rest of your life, at least not what I was receiving…so what is the point?

I want to work…but if I were to get this job, and then find out I was going back into invasive treatment, I wouldn’t be able to keep the job. Additionally, taking the job impacts my disability claim. So if I took the job, and then had to quit the job (or be let go), because of my health, it would be a huge letdown. I would no longer have a job, and still be less eligible to receive disability.

I am not a failure, though.

My health isn’t in my control. Yes, I can do things to help myself, like supplements, and watching what I try and eat…but I can’t think myself well. Staying positive is important, and does help how you feel, but knowing and accepting your limitations is important, too. I knew from the second I woke up today, that I was not going to make it to my interview. The interview was scheduled for literally right now…and it still hurts to try and lift my arms or legs. I’m wondering how many ulcers are in my colon, because it feels like a billion. If I had walked in, looking hungover, miserable, and unable to walk straight, they’d have questioned my sanity, and my ability to perform the position. I did the right thing moving the interview, instead of canceling it all together. If I get bad news on Tuesday, I can call the company and explain that something has come up medically, and I will no longer be able to fill the role successfully.

If you’re reading this, and you’re chronically ill, remember that you can only push yourself so far, and that’s okay. We can’t give up entirely, because then we’re just as bad off, but we also shouldn’t be pushing ourselves into the hospital to appease others. The longer you’re sick, the better you get at predicting how you’ll feel, and what you can and can’t do. I never know from one day to the next how horrible I’ll feel when I wake up, but I do have a basic idea once I am awake, how I’ll be for that day. It’s okay to cancel plans. It’s okay to stay in pajamas. It’s okay to take a few naps!
What we want isn’t always what is best for us. Loving yourself starts with accepting your limitations, while working with medical professionals to expand the things you can do. There are tools and resources to assist with independence, it’s just a matter of finding them, and using them.

Failure Isn’t Always Failure