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

Family Planning (NSFW-ish)

Okay folks, there will be some basic biology talk in this post so if you don’t want to read about any of that, I’ll see you next blog 🙂

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Ah yes, birth control. That thing you wanted until you turned 30, then immediately wanted to burn so you could start a family with the guy of your dreams…just kidding, this isn’t a sitcom. I was put on the pill at 16 because I had periods that were brutal. It turned out that I had really bad ovarian cysts. I was on the pill from 2002 until 2014. I wasn’t on anything for a little over a year. Then, after a year and a half (or so), I got an IUD. There is my birth control journey in a nutshell. There were different types of pills involved, but because of my cyst issues (and what turned out to be endometriosis) I needed high dose oral contraceptives. I went off for a little over a year because I wanted to see if cysts were still an issue, and while they were, the endometriosis was really more of an issue than the cysts were. At the time it wasn’t diagnosed, though. Once I kicked the pill, my doctor felt comfortable with the diagnosis. So how does this all fit into Behcet’s?

For starters, there is an awkward give and take with the whole birth control issue. Most of my medications are contraindicated in pregnancy. Some are actually so bad for pregnancy, I had to prove I was taking reliable measures to avoid becoming pregnant. Of course my family history of blood clots, and having vasculitis, meant I was pushing the limits of estrogen containing birth control pills. My doctor had told me that being on birth control pills that contained estrogen, was a surefire way to get a blood clot.

I really didn’t want a blood clot.

I was able to forgo birth control entirely because I had failed to get control over periods using non-estrogen containing oral contraceptives. They had wanted to use an IUD, but I was super afraid at the time. I also knew that I wanted children in the next five years. At the time I was with someone who had lab work that showed issues, issues that would make conception without intervention highly unlikely. The chances were low enough that, when presented with the numbers, my gynecologist was comfortable enough with me going sans birth control, despite being on medication that usually required me to be on birth control.

Score one for male factor infertility.

I don’t do drama, so for the record, my ex did go on to have an adorable baby boy with his gorgeous girlfriend. While we were together I was informed given the information at my disposal, that we could not have children. Indeed, I was able to stay off of birth control for well over a year, without a pregnancy. 

Now, for so many years the goal of life was to avoid pregnancy. Let’s me honest, for most of us that’s how it goes. We try to avoid pregnancies, until all of a sudden we realize we want kids. Some people are lucky enough to avoid pregnancy, then become pregnant, when they find it convenient. Other people find themselves getting pregnant when they didn’t plan on it, or struggling to get pregnant at all. Then there are the weird sick women out there, who have the added benefit of having to seriously plan out pregnancies because of illnesses and medications.

Doctors have had various recommendations for me. Some have looked at the research and been comfortable with my proclamation that I want children some day. For many women with Behcet’s, pregnancy brings a relief from symptoms. Doctors don’t really know why, but Behcet’s symptoms, and even the disease itself, tend to lessen during pregnancy, and even shortly afterwards. Of course some women have worsening symptoms during pregnancy, and more have issues following the birth of their children, but there was hope.

Other doctors have acted like I’m insane. The medications alone make it a really risky idea. I would have to stop certain medications for a certain period of time, but also be able to start pregnancy safe medications within that time, to keep all my symptoms in check. A seizure during pregnancy would be really bad. Gastroparesis makes me nauseas and struggling to feed myself adequately, how in the world will I be able to nourish a growing baby? They point at the unknowns genetically in terms of how many people in my family have autoimmune ailments. Of course there is no guarantee that I’ll be passing anything along.

The rest fall somewhere in the middle, which I feel is the right place to be. I definitely don’t expect to have an easy go of it, but I would like to have at least one or two children of my own. I would love an adopted child, or a stepchild, just as much, but there is something about a biological child that does call to me. I’ve definitely considered IVF with a surrogate, but that is an expensive route. It’s also the safest in terms of what would be best for the baby. (Think about it, my body does a poor job of keeping me alive, entrusting it with a fetus seems terrifying to me.) A surrogacy would also mean I could stay on a lot of my medications, or at least go back on medications sooner. (Some medications you cannot be taking because they pass along birth defects via the egg, so I would have to stop those prior to egg harvesting.)

Is this a fun read or what…

I know my best chance at having a healthy biological child, is via a surrogate, but it doesn’t make thinking about it any less daunting. I mean, I was married, I’m in the process of getting a divorce, I’ll be 32 in April…and there is a timeline on fertility. I didn’t do myself any favors with the chemo. (I still don’t know if there was damage to my eggs, but again, that’s not something I can really know without specific fertility testing. My insurance only covers fertility tests if you’ve been trying to conceive for a period of time without success.

I’m pretty sure I don’t meet the qualifications of trying for any period of time, given the fact that I’m painfully single.

Another issue for me is that I did have early stage cervical cancer. They removed a pretty decent size of my cervix, and the location has made it more likely for me to experience issues with premature labor. So, you know, as if it weren’t enough to have Behcet’s with heavy GI involvement including gastroparesis…I had to go and get cervical cancer, too. Don’t get me wrong, I am beyond grateful that it was caught early, and that I only needed local surgery instead of a more invasive surgery and chemotherapy. It just would have been nice if I could have avoided cancer all together.

Doing six months of chemotherapy, then getting diagnosed with cancer? Yeah, that’s only something that happens in my life.

This is another rambling blog, but today was infusion day, and I’m in that weird headspace of sleepy, but full of vitamins. I hope I find someone someday who can love me, illnesses and all. I also hope that they want children (or already have children) and are supportive of whatever pathway to parenthood we choose together. It may not be conventional, but that’s okay. Right now I do have an IUD. It was placed before I was diagnosed with cancer, and I’m thrilled with it. It controls my endometriosis issues, and I don’t know it’s even there. There isn’t a worry for me regarding pregnancy, which is important still with all the medications I’m taking. With my nausea issues, vomiting, and malabsorption, it was time to get something that didn’t rely on another pill I would have to remember to take. Plus, no estrogen!

Family Planning (NSFW-ish)

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

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?

To Port or Not to Port…and how to ask the question!

During Rituxan, my nurses had noted that my veins were incredibly difficult to work with. This wan’t news to me. Every time I would go in for blood work, it would take multiple sticks before they accessed a vein. The only veins that work for me, are the veins in my hand. There are two exceptions, but neither is practical for every procedure or blood draw. The first exception is whatever sorcery the EMT’s and paramedics use. The only thing I can think of is that while I’m unconscious, or actively seizing, my veins become more prominent due to muscle contractions, and an elevated heart rate and blood pressure. They usually have to stick me at least four times, though, so it isn’t a total win even though they can get that one pesky arm vein. The second exception was what happened during this past hospital stay. After one nurse missed twice, and a second missed once, they asked for a doctor to help. The  doctor missed twice with an ultrasound machine as guidance. This was extra fun because of how deep the needle was during the process. I’d also been given nausea pills that hadn’t really worked, and no pain medications or fluids because, duh, no IV. They were drawing up IM medications when the special IV team arrived. They used another ultrasound machine, and even they struggled, but managed to get it in to a deep vein in my forearm. Luckily they used lidocaine that time, so it didn’t hurt nearly as much.

When I told the doctor that we were in the process of beginning IVIG, she said that it would be a good idea to get a port. I agreed with her, but admitted I was worried. Port maintenance isn’t a huge pain, but I do have vasculitis. I guess my fear is that the existence of a port, potentially increases my risk of blood clotting. (Granted you use heparin to prevent clots from forming, but still, terrifying.) I’m also afraid to ask my doctor.

If I had a port I’d have the option of administering IV Zofran and Phenergan, which would be an enormous help. Right now I’m using medical marijuana way more than I want to be using it. Having to use it multiple times, per day, just to function, is no way to live. I process nausea drugs quickly, so having a fall back option, like marijuana, is the only way I can be sure to avoid vomiting, and is the only way I’m able to consume anything at all. We could also talk with GI about home IV fluids, including banana bags to supplement all the vitamins and whatnot that I’m not getting due to my dietary restrictions.

Previously my doctor made it clear she doesn’t order ports for her patients, as most issues are temporary. I went through chemo, without a port, and it was hell on me and the nurses. Multiple nurses stated multiple times that I should have had a port placed. I was also not allowed to schedule any of the last spots of the day, as it took a good 20-30 minutes each time to find a useable vein. They couldn’t use hand veins, so we always used this same vein on the side of my thumb. It got really aggravated by the end of the six months, but could still be used. As an IV placement, it sucks though. It’s blown several times, and curves over 45 degrees.

I’m just anxious about asking. I’m also anxious about people looking at me weirdly. It’s easier to hide than a wheelchair, obviously, but it’ll still be there, and people may still ask. What will people I date think? How will I even be able to date? I could show up to most dates without a wheelchair, unless they wanted to go for a stroll afterwards. What happens when the time comes for them to see more of me, and this lump is right there by my collar bone?

It’s all hypothetical, of course, and I doubt my doctor will even okay the port…but I anticipate it is going to be necessary if and when we do IVIG. I just don’t have a good vein for it, and if we’re going to be doing it every 4-6 weeks, and if there is blood work like I’ve been getting, it’s time. Every ER doctor and nurse, has wondered why I don’t have a port. I’ve never had a valid answer other than, my doctor doesn’t think I need one.

I know myself. I’ll be anxious if it happens, and anxious if it doesn’t. If I do get one, I’ll be self conscious for a while, then snap out of it. The same goes for the chair. Maybe I wanted one with normal wheels instead of a power chair, but anything is better than my current situation, and I can always make it my own, make it unique.

Also, I’m 1/4 of the way to my goal on You Caring. I can’t wait to reach my goal, keep insurance, and kick some major Behcet’s booty!

To Port or Not to Port…and how to ask the question!

Wheelchair Evaluation and Fundraising

First and foremost, my wheelchair evaluation is in exactly 10 hours! My apartment is nowhere near ready for it, but it’s as good as it’s going to get for right now. One of the aggravating parts about any chronic illness, is having a list of things to do, and only enough energy to do a few things. The kicker is never knowing which things will drain you. I thought for sure I could at least fold and organize my clothes. Instead I ended up with clothes in boxes and baskets. It’s chaos, but at least my space is open for the mobility advisor.

Unfortunately the kitchen and living room are an unusable mess. I try my best to take care of my own messes, but I’ve run out of energy to keep up with my roommate. I know I need to follow through with my promises to do cleaning in lieu of utilities, however, it is just too much. When I was nightly cleaning, I would often end up having him fry something after it was all clean. It just felt futile.

People have been saying, “You walk fine,” and rolling their eyes when it comes to the wheelchair. They don’t seem to appreciate how much effort it takes to walk “fine”. I am constantly reminding my body where things are, and even the constant tension of my muscles can’t always prevent a fall. I used to walk blocks to take the dog to the grassy area. Now going around the block is nearly impossible. There tons of places and things I’d love to do, but I know my body isn’t capable of the walking required.

I am getting a wheelchair because I have ataxia. I am not coordinated, and it is worsening. I also have tremors. A few steps for me, equals a whole lot for someone else. Toss in my difficulty get adequate nutrition, and you have my life.

Then there is the fundraiser. I started a fundraiser to help me keep insurance once my divorce is finalized. It will be hard to continue living where I am living regardless, but if I cannot come up with insurance funds, I’m not sure where I would go or what I would do. There was sone resistance since I did a fundraiser to get to NYU a year or two ago, but that was under different circumstances. My divorce settlement has shifted, and the shift leaves me without insurance, or a way to pay for insurance.

I hate asking for help, but sometimes it has to be done.

Just a short update tonight. I’m quite tired, and I have to be awake earlier than usual!

Wheelchair Evaluation and Fundraising