Permanent Neurological Damage?

After two months of no treatment, I was hoping that IVIG would bring about a rapid change in how I felt. Well, that wasn’t exactly what happened. Right after IVIG, a nasty heat wave struck, and I holed myself up in the apartment with the AC going and ice packs at the ready. I still ended up in the ER for fluids. Basically I got diarrhea, then constipation, and all of it aggravated my already dehydrated body.

IVIG isn’t a fix, it’s a patch, and that’s okay.

I knew going into IVIG, that it wasn’t a cure. The infusions don’t last, and the impact isn’t always the same. It really just depends on how my body handles it. When I went into this round of IVIG, I was severely flaring. I had vaginal ulcers, uveitis, GI ulcers, and neurological issues causing muscles spasms and tremors. Basically, all my Behcet’s issues were going full blast. My eyes are better, my vaginal ulcers have healed, and my GI issues have improved. I still have gastroparesis, and I still have inflammation from where the ulcers were, but I’m no longer actively bleeding.

Neurologically, though, things aren’t ideal.

Thankfully, my tremors have gone away, minus the mild tremors I’ve come to just accept as part of my life. My walking did improve, but it didn’t go back to normal. I have tried my best to walk normally, but it just doesn’t happen. When the physical therapist from home health called on Thursday to come and evaluate me, I figured it was perfect timing. I was having a decent day minus the nausea. When I showed him where to park, he was watching me walk (without my knowledge), and noticed that my walk isn’t “normal.” I know that my feet roll inward, but what I hadn’t realized, was that I was still dealing with foot drop.

During the formal evaluation he pointed out the moment when I was unknowingly compensating for my foot dropping. When I corrected myself and tried to walk properly, it was nearly impossible. It also hurt…a lot. Then he brought out the foam pad, and even though we expected balance problems, I wasn’t prepared for what actually happened. The second I removed my hands from the counter, relying on my legs to support my body, my left leg locked rigidly, while my right leg locked bent and the knee, with my foot rolled awkwardly. Frustrated I tried to unlock them, but they were pretty adamant about staying locked. I could only unlock one leg at a time, which would worsen the other leg’s spasm.

The therapist said what I knew, but didn’t want to hear. The issue was clearly neurological. My feet, and legs, were locking down in positions that indicated nervous system damage.

It wasn’t as a surprise, but it was something that hit me harder coming from a medical professional. Despite my background in school, and experience from working in the medical field, I had talked myself into a false sense of calm. I would tell myself that certain issues were just a result of so long without treatment, and weak muscles. I also have told myself it’s just the heat. While the heat exacerbates the issues, I have to admit that I’ve noticed the issues on a milder scale, even when it isn’t hot.

I have a power chair that isn’t portable, and a non-customized manual chair that is portable but very difficult for me to actually use. There are so many things I want to do, and once again, it feels as though my options have shrunk. I’ve begun fundraising for a portable power chair, something my insurance doesn’t cover, while feeling guilty for asking, yet again, for help.

Positivity?

Some days I am positive, but other days I accept that it’s okay to be angry. I have lost a big part of my independence. Options, like the chair, exist, and I hope to acquire them someday, but for now, I’m stuck. The lack of independence that comes with neurological issues is hard to put into words. You’re still you, but your body isn’t yours, at least not fully. I can think and want to do something, but ultimately I rely on my nervous system to carry out the action. I see my neurologist next week. I’ll be discussing with him the issues I’m experiencing with my gait, as well as discussing with him my unending brain fog.

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Permanent Neurological Damage?

Horrible Round of IVIG

I finally got my IVIG scheduled, and the first day (yesterday) was horrific. The first issue was that they wanted me to be there early for a 9:30am infusion. I usually don’t wake up until 10 or 11. Still, I figured I would just sleep it off. I’ve tended to sleep during infusions when I’m not feeling well going in. I was having tachycardia problems yesterday, but again, I just figured it would all even out once the infusion began.

Oh so wrong.

They took me to a room, and there were no windows. It was a bummer since the other rooms had windows, and I was expected to be there for the usual 5+ hours. The nurse unceremoniously cleaned my port, her sterile technique was questionable at best, but she did at least use the proper skin cleaner. I’d have preferred that she clean a larger area, and keep her actual tray sterile, but I’m pretty sure it was at least decent enough to prevent an infection…I hope. The infusion clinic is in an infection disease doctor’s office!

Then it’s time to access my port. Ugh.

Unlike other infusion places, I’m not asked if I want lidocaine first. Honestly it doesn’t bother me, the lidocaine stings just as bad as the port being accessed, but I found it odd. She pushes the needle in, and she gets return and flush. Great, right? Um, not exactly. Instead of having the wings of the huber needle flat against my skin, they’re still sticking straight up, creating a huge tent once it’s taped over. If that wasn’t bad enough, prior to taping it over, when I was explaining that she needed to bend the wings down, she pushed and twisted the needle, which hurt like hell.

You win nurse. I’m not numb, and you’re manipulating a needle in my chest. 

As she’s arranging my pre-meds, she asks if I’m going to want a heparin flush after the infusion. Yeah, I’d like to keep my port from clotting, and since IVIG is a blood product, it’s generally a good idea to flush the port, even if I am coming in a few days later for another infusion. In any event, the pre-meds begin, and I’m surprised to find out that they’re not using a bag for any of the drugs. Everything is going to be pushed. I’m assured that the pushes will be slow, and the nurse makes a joke about how Benadryl makes patients feel a warm rush.

Not exactly.

Zofran goes in, and helps my nausea rapidly. I then decide to do the steroids, figuring the Benadryl will counteract the rush the steroids generally give me. In go the steroids, and my already tachy heart increases it’s beat. Great. The nurse goes and gets the Benadryl, and as soon as she began pushing it, I panicked.

I felt like I was choking on an ice cube, and there was a warm rush through my abdomen and groin.

The warm rush was tolerable, I was expecting it, but the sudden choking sensation terrified me. I honestly thought I was dying in that moment. The feeling was so intense, I figured something had gone wrong, and my heart was shutting down. There couldn’t be another reason for such a horrific feeling. The nurse had a moment of panic because I sat up violently, and began clawing at my throat.

After laughing off the reaction, and telling me that she’d warned me about that sensation, she tells the manager that they need to use a bag next time to give me certain pre-meds. The manager said no, because it would just add to the time.

This was another issue. The nurse and the manager were arguing, complaining about other employees, and complaining about patients, all within earshot of those of us getting infusions. I was told that my infusion should have only taken 2-2.5 hours. Twice as fast as my normal infusion. We did take the full 5 hours, but we hit max rate way sooner than I have in the past. My theory is that we started out at a higher rate than I have previously. That or I had a reaction because my insurance insisted I use another brand of IVIG.

My heart rate wouldn’t cooperate.

I was already 100bpm when I arrived. I began having runs into the 150 range, so they had to stop the infusion for 10-15 minutes. (This just adds to my theory that we were already doing the infusion too quickly.) Due to the issues I had, they told me once I’d managed to finish the infusion, that I’d have to come back on Monday instead of Saturday for my second day.

That’s fun, when you’ve left a screwy needle in my chest.

Exhausted and in pain, I just wanted to get home. I padded the needle as best I could, hoping I wouldn’t move it too much in my sleep. Today I woke up, and the needle was clearly crooked, and bent forward. I knew immediately that I couldn’t keep it in until Monday without risking my port. I took a photo, and contacted my nurse manager for home health. I then called the 24 hour hotline, and they arranged for a nurse to come remove the needle.

It was really messed up.

The needle was so misplaced that I had to help stabilize the port so the nurse could de-access it. To me it wasn’t a huge deal, I’d realized it wasn’t going to be safe until Monday, and took the proper steps. The reality is that the needle was never properly placed in the port. Due to the placement of the wings, and the fact it managed to bend and twist, my port was in danger of breaking. The needle could have broken off into the port.

My nurse manager is going to contact the infusion center because it’s apparently a major issue. I don’t plan on going back after Monday. Monday isn’t something I can skip, I need this treatment to, you know, live…

Which is why it’s terrible that places like this exist.

Knowing I have to go back, because I need to save my nervous system, makes me angry. I  will go back, have my chest port punched oddly without any numbing beforehand, and then I’ll have drugs pushed into my body that make me feel very sick. I’m actually afraid of the Benadryl push. It was honestly a feeling like death.

On the positive side, my gait is slowly improving. I was concerned that the nervous system changes would be permanent this time, but so far it seems like I’ll recover. I’m still worried about my port, and what damage is going to be done on Monday. It’s just something that is going to happen, and I have to trust my team to fix whatever the infusion center breaks.

Horrible Round of IVIG

A Sick Chick’s Thoughts on the Amazon Boycott

It was Prime Day, the summers answer for Cyber Monday or Black Friday, but of course, it’s all on Amazon. Whether it’s being pissed off that the site was frequently down, or that the deals weren’t what you wanted, it’s a guarantee that someone somewhere is upset. There were definitely valid concerns behind the call for a boycott, including how Amazon hurts smaller bookstores and a lot of authors. There were also valid concerns over how the company treats warehouse workers.

So did I boycott? No. 

Yes, I’ve had jobs that sucked, involved tedious work, with a ton of standing, and I’ve had break rooms that are as far away as my break itself is. I also miss seeing little bookshops around town. Whenever I can, I do choose to shop in store for  books. I also tend to read a lot of smaller authors, who may have a series or two, but aren’t always super well known. Sometimes they are, but if the book series is 10 books long, and those books are FREE on Kindle, I’m going to read for free. I will, however, try and buy the first or second book (depending on if there is a sample or not for me to judge how far I’ll get into the series.) The book I buy, I often end up giving away. This ends up not always benefiting the author in the long haul, but hey, I tried.

I’m poor.

I can’t afford to buy every book I read, even digitally, so when I have something like Prime Unlimited, I don’t just want free books, I need free books. If I can afford a book, I’ll buy a hard copy of it. Some books, from authors I know and love, I’ll buy the hard copy because I’ll know I’ll want to share it with someone. I have books that have been passed along so often, I wouldn’t be surprised if one came unexpectedly back some day.

I’m Disabled 

Amazon in general, makes my life possible. I’ll have my roommate get some groceries for me when he’s out, but I prefer to be as independent as I can be. The best way to get groceries right now, for me, is to order them through Prime Now. I have stores to choose from, but Amazon tends to have the best prices. Other items I may need, are also often procured via Amazon. When the world begins to strip abilities from you, you cope. I do hope they come up with a way to make their warehouse employees happier, but I also recognize that a lot of warehouse jobs are just difficult. It’s repetitive, manual labor. There are things that Amazon can do to make these employees’ lives better, and we should find a way to hold them accountable for their actions.

But don’t HATE me. 

Friends were upset when they found out I shopped on Prime Day, but there were a few things I already needed, and they were on sale, so of course I shopped. Many more are still boycotting Amazon, and are irritated that I won’t. I’m writing this, and then I’m placing an order for melatonin. It has been far too hot for me to even use my wheelchair to get to the store and buy things, even little things. I am not a cold human being. I understand that the employees are unhappy, and that a giant company is squashing smaller business through just sheer domination of the market. I also understand that I have needs as a human that this giant dominant entity is capable of providing me with

You do you. Boycotts are great, and walk outs are great, too. Attempting to unionize, pushing for certain legislation, all good ways to make a statement. Just don’t come down too hard on the people who opt not to participate. Some of us need companies like Amazon, because we aren’t physically capable of getting through our sick people lives without them.

A Sick Chick’s Thoughts on the Amazon Boycott

Paging a Doctor…Literally Any Doctor

My new rheumatologist told me that IVIG was approve, but that they needed to find an infusion center. Fair enough…except that IVIG isn’t approved. I called my insurance to kindly point out how serious the situation was regarding IVIG, and they told me that they had nothing on file aside from my prior IVIG.

Well fuck.

I left a message for my new rheumatologist yesterday, pointing out that the neurological symptoms are coming back, which is bad. The last time it happened I was left with permanent issues. It changed the entire course of my schooling and career. Now I’m trying to focus on a thesis, when I can’t stay awake for a full hour.

Example: I just typed our instead of hour. I wish I could say that it wasn’t a common occurrence, but it is. I also don’t do super when it comes to identifying objects. I’m not in the stroke range, thankfully, but I did get to go through stroke testing because of how bad I was doing the other day. 

As if all of this weren’t enough…no IVIG on time, means I’m walking around with an inflated port. The ER doctors told me I could go to six weeks, but I was told VERY adamantly when I got the port, not to go longer than 4. With vasculitis it was suggested 3 weeks was ideal, but 4 was the maximum I could/should go. Since I was getting infusions of fluids more often, it didn’t make a huge deal, but now it kind of sucks. My hope had been to do needles during the week, giving me weekends off, but that obviously requires home nursing.

Which my insurance denied from my primary care doctor…but also hasn’t approved through my specialist. It’s cool, I’ll just have this time bomb in my chest.

My primary care doctor responded today, and I’m to go to the ER ASAP because there is a chance that the port is fully clotted by now, and  could therefore need to be removed.

Yeah, the think I juts had implanted two months ago, to make life easier, may now have to come out, because doctor’s and insurance companies can’t get on the same page.

I’m trying to be as zen about this as possible, but honestly? it really sucks. All I can do is sleep, and even that isn’t the most restful thing. I wake up nauseas, or super adrenaline filled. I fall asleep on the couch, while sitting, just however and wherever. I can feel my body giving up.

Neurologically I’m having more muscle spasms and shaking. I’m so terrified it’ll be like it was a few summers back. I don’t want to end up spending a long time in a hospital, losing total coordination, and having to rely on nurses every time I wanted to do something as simple as go to the bathroom. At UCSD I was able to convince the doctor to allow me to use the actual toilet, instead of a catheter or bed pan, as long as I had a nursing escort. Sharp isn’t that kind. Even when I can walk, they don’t feel it’s worth the risk.

Another reason it’s not a good time to go into the hospital…July = all the new doctors. Nothing like having a rare condition with a bunch of inexperienced interns. 

I really just need this port flushed, and some steroids. Some IV steroids would be stellar. The only other thing I can think of is begging my new rheumatologist to give me something to suppress my immune system while I wait for IVIG. That or some major steroids. I started back up on them today, because the symptoms didn’t become significant until I discontinued them. Regardless, it’s time some doctor stepped in and recognized how bad my current situation is.

Behcet’s is sneaky. Your labs look great, and doctors think you’re exaggerating…until all of a sudden you’re seriously ill. I told everyone for months that I was deteriorating, two summers ago. Eventually I couldn’t move without violently shaking, and I still was treated like I could just “stop” doing it. It wasn’t until they checked my reflexes, and checked my pupils, that everyone finally realized I was in trouble.

My pupils were super dilated a few days ago, but thankfully it was attributed to a nausea patch I’d used. (Meant for sea sickness, but I was hoping it would help my overall nausea.) They’re still dilated, but at least they’re reactive and equal. Unfortunately they’re still dilated and that isn’t ideal. I can’t do anything, though. I’m stuck calling doctors and asking for help, when I know there isn’t help to be found.

Paging a Doctor…Literally Any Doctor

Dear Internet: I Owe You an Apology and Explanation

My last several posts have included no tags, no images, nothing, and then I went missing for several weeks. The whole purpose of this blog, my Instagram, and hopefully my eventual YouTube channel, is to raise awareness for all rare diseases, and to connect with people struggling with any illness, rare, chronic, and every other option out there. The reality of that situation, though, is that I’m sick, too. When you’re sick, and you’re sick but you want to help others who are sick, sometimes you lose yourself. I also fell into denial, and depression.

First and foremost, I’m still of the mind that IVIG is working. That being said, there has been a setback regarding where I’ll be going, when my next round will be, etc. My rheumatologist’s office hasn’t called once since the last round, which I find appalling. They had the nerve to take an extended lunch, and then to act as though they simply forgot my Zofran…a medication that was literally discussed at length the day prior, when I had my first day of that round of IVIG. There was an issue with ordering it, I had to get it in the middle of the session, and it caused a delay because you can’t run Zofran with IVIG, it causes the drug to clot.

Anyhow…

To the nurse practitioner, you seemed content in acting as though it wasn’t your fault…when it was. I became your patient. You agreed to cover for my doctor, and when she came back, you continued to be in charge of my care. It wasn’t something either of us wanted, but at least I had the politeness to be respectful. You’ve been told several times about my GI issues, and you know that I need IV Zofran for treatments. I use oral Zofran and medical marijuana at home. The oral Zofran takes a long time to kick in, and ha been less effective lately, as has the Phenergan and the Antivert. (I wish they’d prescribe me both so I could just use the Phenergan regularly, and the Antivert for cars, but that’s a whole different battle.)

The NP made it clear the to the infusion nurse that I needed to schedule an appointment, something we both felt wasn’t appropriate given the timing. I mean, the clinic is calling you to tell you that you made a mistake, resulting in the patient (me) being uncomfortable. Now you want to remind me, via the nurse, that I’m do for another appointment. The nurses there didn’t feel shocked when I said I hadn’t made the appointment because I was looking to change doctors. In fact, they looked relieved.

With all of that I ended up having a ton of stress, and a less than fantastic round of IVIG, again. There was some initial success, but with the gastroparesis issues, it was not a good month. Now, due to issues with my new doctor, I don’t know when IVIG will be. My first appointment, last month, was the establishing appointment and I was told that they would be setting up IVIG. They weren’t sure if they could do it in the clinic, since it’s a blood product. I did suggest they set it up with home health, as nurses who are qualified can come here and do it. The hospital near me also has an infusion center, though I haven’t heard great things.

Anyhow, the doctor didn’t order the IVIG. I went to another appointment, where he awkwardly announced he needed to go to the bathroom, upon which the medical assistant assured him that he could after he saw me.

What now?

We talked, and I was quickly frustrated. Not only had they not ordered the IVIG, he didn’t seem to remember that we’d had this entire conversation about a month prior. The doctor is well educated, but quite old, and ready to retire. Rumor has it that new doctors are coming into the practice soon, and it’s proximity to my house was a selling point. A friend is also a patient.

I did everything they wanted, and now they want a TB test as well. The general plan for me has always been chest X-rays. With the reactivity of the skin in Behcet’s, it’s easy to get a false positive. Even if you do have a positive (and you don’t have Behcet’s), the result would be to get a chest X-ray and note the positive reaction. Based on the chest X-ray, you may or may not be given medication.

Plus, let’s not forget, IVIG doesn’t suppress the immune system…

Obviously I’ll get a TB test if that’s what it takes, but with my flare already underway, it seems a bit of a stretch to expect me to run around having my TB test done, and then read a few days later. I could see if they’ll do it at a place downtown, or even in the office, so I can go near my roommate’s work, or near my home.

If you needed more on where I’ve been: heart rate regulation issues, port rejecting dissolvable sutures and making the whole area itchy and painful, living life without a bra even though I prefer at least a sports bra because of aforementioned painful port, losing weight because of gastroparesis, and when I did finally manage to eat a bit, I sprouted a massive GI bleed…

 

Dear Internet: I Owe You an Apology and Explanation

What Is Happening

This was not a pleasant round of IVIG. First a friend who was supposed to help me, bailed at the last second for personal reasons. Another friend stepped in for the first day, and the second, but then I was on my own. I went home, and my roommate thankfully helped by taking care of the dogs, because my body just shut off. For whatever reason, I was still struggling to regulate my temperature the first couple of days after IVIG. I was hanging out around 95 degrees, but I felt like I was burning up.

Then gastroparesis decided it should fuck with me.

I ate a potato, a very safe food, and several hours later the vomiting began. To be honest, I couldn’t sort out what I was throwing up aside from the potato, but it felt like things from days before. There was no desire to visualize, at this point it’s just throw up and flush. My bedroom light filtered in through to the bathroom, and I sat, in the dimly lit room, and just cried.

This was shortly after taking my night meds, and what had set me off was simply drinking too much water. I was thirsty, and I had to take my pills. It was so simple. I spent the entire night sleeping on the bathroom floor, too nauseas to move. The irony was that I’d thrown up my zofran, and I was far too nauseas to attempt to keep any more down. I smoked, but I received a bad batch of medical marijuana this time. It really doesn’t work for my nausea. (Probably because it’s mostly stems and leaves.)

All of this has brought me to a really difficult point in my thought process. I’m depressed, but it’s so much more than depression. There is this sense of denial that I’m struggling with. I spend so much time pushing other people to accept that my situation is not temporary, and that certain aspects will continue forever, but I can’t accept that myself. We’ll be retesting, but as far as I now, I have mild to moderate gastroparesis, moderate to severe gastritis, and general inflammation of the entire GI tract. There are things we can do for the inflammation and even gastritis, starting with the IVIG. (Well technically we started with GI medications to reduce acid, but I’m talking hitting the source not the symptoms.)

What about the gastroparesis?

It is what it is. I don’t want to live life with a needle in my chest, avoiding water, and being generally stressed by the pain and discomfort. I also don’t want to miss out on life all together, because I’m at home weak, or vomiting. Take today. I’m far less nauseated, but the simple act of taking the dogs out, has me back in bed thinking about taking a nap. The headache that’s finally abating from IVIG, is being replaced by one caused by my low blood sugar. Thankfully Gatorade is coming through for me, with slow sips, although why change up your orange flavor?

Seriously Gatorade…I expected orange and I get tropical mango? Not cool.

And maybe all of this is a moot point. Maybe it doesn’t matter whether or not I’m nauseated, whether or not I have a needle in my chest, and fluids strapped to my back. Maybe it’s all just a giant mess of people doing whatever they can to get through the day, and the next, and the next.

What I do know is that I have a headache, I’m not hungry, and I should find something edible that won’t have me vomiting again. I also only have $12 until Monday, and no food. Being poor while having expensive conditions is definitely a double whammy. Of course I wouldn’t be this poor if I didn’t have these conditions.

What Is Happening

Pain, Bleeds, and Now Uveitis

You can get IVIG more than once per month. A lot of people do it every two weeks, or every three. My suspicion is that I should be one of those people. My symptoms seem to come back about a week before my next treatment, and this month they returned with a vengeance.

It started neurological, then went to GI, while still leaving me wobbly. I got a really severe headache, but it went away, leaving me with just a dull headache. Then yesterday the headache came back, making me black out and fall. I was already planning on going in because of the persistent headache, and droopy eye, but falling meant I knew to call 911 rather than wait for a ride.

Thankfully we ruled out anything with my brain or the vessels in it, but everyone agreed my eyes didn’t look right. My pupils were super dilated, and while they could constrict to light, it wasn’t to the amount you would expect, and they bounced back to way too dilated right afterwards. An emergent appointment was scheduled for this morning.

My new eye doctor was great. The team was worried to dilate me more because I was already so dilated, but in the end we did it. After lots of testing, it was confirmed that I did have uveitis, but gratefully it was posterior, not anterior. The bummer is that I’ve had it before, and so this likely means I’m kind of at risk. The amazing thing is that we caught it early this time, so I’ll do steroid drops (without the dilation drops) for one week, and be rechecked. IF things look good, then I’m all settled!

I’m keeping this short because my vision isn’t the best, but I wanted to update, and remind anyone with Behcet’s, or other diseases that could impact their vision, to get regular eye exams!

Pain, Bleeds, and Now Uveitis