Governmental Nonsense and Way Too Many Tears

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

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

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

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

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

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

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

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

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

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


Governmental Nonsense and Way Too Many Tears

Medullary Sponge Kidney – AKA Cacchi–Ricci disease

Okay folks, so here is an odd one, but stick with me. A few years back doctors were checking the blood vessels leading to and from my kidneys, because of fluctuations with my blood pressure. (Namely really high blood pressure with no apparent trigger.) During the scan they had noted two other interesting things. The first was that my celiac artery was pretty damn narrow, as in almost blocked off entirely. The second realization, was that I had a condition called medullary sponge kidney, also referred to as Cecchi-Ricci disease. Most of the time, they just called it medullary sponge kidney, or MSK.

But that’s kind of misleading.

I was told not to worry, that a lot of people have MSK, and that the finding tends to be something that is incidental at autopsy, or like myself, is found unexpectedly during other imaging studies. When I asked if it could possibly be the cause for my weird urinalysis results, as well as my ridiculous amount of kidney infections, my concerns were dismissed. I was assured it was a benign finding.

But it’s not…at least not always.

Some patients don’t have any issues, and that’s great. My UTI’s, without any reasonable provocation, don’t make a lot of sense. Urology was preparing for some seriously invasive tests when I started to focus on my Behcet’s. There was concern about bladder training, retained urine, whether I was properly cleaning after bowel movements and sex…um, yes?! I get that not everyone does, but I went and had six infections in eight months.

If you’re wondering how I felt for those eight months, the answer is, “generally miserable.”

I had some bladder infections as a teenager, starting around 13, but we always just kind of figure those were me learning to handle hormones or something. As an adult though, things got rough. Now I know I have a stone, based on the urine results at the ER, but I won’t know for sure if I have an infection until I have a clean catch urine done at the lab. I’ll call the doctor tomorrow and have him phone in the script.

It is definitely time to talk to a nephrologist. 

Maybe I’m lucky, and my MSK is minor, and my issues with infections are behind me, but given that I have had a lot of the complications associated with MSK, and that literature recommend MSK patients drink more than the average person, I’m a tad worried my lack of fluid intake is doing me any favors. I also want to avoid acidosis again, which is one of the complications that can happen in MSK. (I have had severe acidosis twice, and mild acidosis a handful of other times.)

MSK isn’t linked to Behcet’s, it’s just an odd thing my body did.


Medullary Sponge Kidney – AKA Cacchi–Ricci disease

Pushed Myself Too Far

I should have rested on the 2nd and 3rd because of the IVIG, but instead I pushed myself. The reasons were stupid, mostly pride, and a little bit of expected support systems falling through. I thought I was okay, but yesterday I had numbness in my hands. The numbness  got worse and worse, and started to move into my arms and one of my legs. When my hands cramped up, I figured the issue was my potassium, so I went to the ER.

Now, my body sucks at normal functions, but it has been doing well with avoiding seizures. Part of my concern with the potential potassium issue, was that I would seize. Going to the ER for fluids and if need be, supplementation, made sense. As I was in the waiting room I started to lock up more and more, and I realized my thought process was becoming disjointed. As I slid into a partial seizure I asked someone near me to get a nurse. It was the worst and weirdest set of seizures ever.

The partials were terrifying because my body was rigid, and my eyes open, but I couldn’t open my mouth, or say anything. I could move my eyes. Then I guess I went into a big seizure. Everything is kind of jumbled but I do remember one part and it was the worst seizure experience. I was back in a partial, but unlike the ones that only impacted the right side of my body, my whole body felt stuck. It was really hard to stay awake, but I also felt this intense fear. It was like I was dying and my brain was screaming at me to run, but my body was just ready to go to sleep.

That’s when I noticed the respiratory therapist, coming at me with a rubber tube, all lubed up.

Here’s the thing. My vision was weird. Everyone was blobs of color, or those little sparkly floating things you see sometimes…unless you get close to me. Then I could see you. The tube starts to go up my nose, and I want to make him stop, but I’m still basically paralyzed. We get into a discussion, even though I can’t speak. This guy was my absolute hero in this moment.

“I know it’s uncomfortable, and I’m sorry, but I need you to try and take deeper breaths or are have to help you, okay?”

Some part of me realized that I was panicking from lack of oxygen, which was also why I was falling asleep. I don’t know how long it took to fight back and forth with my body. It is the strangest thing trying to make yourself breathe. Honestly, I always took the automatic portion of it for granted. Making yourself breathe is so hard, and because my diaphragm was basically locked a ton, there were a lot of breaths that I couldn’t get out. I’m not really sure how we kept me from the tube, but I’m grateful for it. I don’t think they had a line in me at the time, I can’t remember, but being intubated without medication would have seriously sucked. Then again so would have major brain damage or a heart attack.

Today I’m resting. Well…this weekend I’m resting. Doctor’s orders. Plus I have to drink a ton of water, somehow, despite the damn gastroparesis. I’m just bummed that I had  seizure again, and even more bummed that the seizure was so violent.

Pushed Myself Too Far

Autonomic Neuropathy and GI Damage

When I do IVIG, it’s always interesting to feel the neurological symptoms recede, but what people don’t understand is that there is permanent damage. It’ll be a while before we really know exactly what parts of my body are being hit hardest by the autonomic neuropathy, and it’s worse because it’s listed as “autonomic neuropathy unspecified.” True, it’s not worse than knowing it is a fatal process, but not knowing the process at all sets me up for odd moments.

Like insisting I can walk the dogs, and promptly peeing my pants without even realizing I had to go. Fun times.

Today I’m plagued with diarrhea, and a whole lot of GI movements, which you’d think would be a good sign but it isn’t. I take stool softeners, and when I finally get IV fluids, I have bowel movements. After that the gastroparesis does weird things. One makes sense, constipation, but even that can involve diarrhea that leaks around the blocked area. The other issue is I had to eat, despite my nausea, which is when I had diarrhea. I still have the food in my stomach. 110%, feel it, can see the swelling, and am fighting the urge to vomit even now, hours later. The act of eating got my lower intestines up and working (they’re sluggish but not post IVIG), so basically backed up stools came out, along with all this lovely diarrhea. (A lot of which his bile. Bile acid diarrhea is the worst.)

The GI issues are complicated, and I’m seeing a good team of doctors now to sort it out. My biggest thing is that IVIG helps some things, while it doesn’t help others. That’s how I know there is a line between what is causing the various symptoms, despite some overlapping symptoms, too. Nausea and vomiting aren’t helped by IVIG. GI bleeding is helped by IVIG. Lower GI pain is helped by IVIG for the most part, but not always, and upper GI pain is not helped by IVIG.

To keep down the Beyond Meat chik’n strips I ate, I smoked, so I’m loopy, but I had an interesting annoyed thought today. I have gastroparesis, things sit in my stomach forever…so then why, when I eat gluten, do I have severe diarrhea within hours? Granted I do feel nauseas first, so perhaps my body is trying to evacuate it the faster route haha.

Autonomic Neuropathy and GI Damage

IVIG is so Much Easier with a Port – Sick Chick Acceptance

Yesterday I was terrified. I had a thousand scenarios regarding actually running the port for an extended period of time. Would it work? Would it hurt just as much as all the IVs had begun to hurt? What if I got a clot. Thankfully I didn’t have to go alone, and my doctor’s office did order extra fluids which helped a ton. They unfortunately didn’t order IV zofran, so I spent a long portion of the infusion and evening trying not to throw up. They fixed it today, but it took several conversations.

Safe to say that I’m ready to move on when it comes to rheumatology.

I love my doctor, I really do, and I was willing to make the trek to her office, even when it would cost me a lot to do so. Now that I’m consistently seeing her nurse practitioner though, I want no part of it.

Thankfully the infusion center insisted that they get the orders correct, and I got my IV zofran. Not sure why so many doctors act like IV nausea drugs are some sort of horrendous thing. I’m trying not to vomit…I’m not trying to go on a four day speed bender. (Which, let me insert this comment here: if you have or have had a drug or alcohol problem, that statement was not meant offensively. It’s just hard when you don’t have a substance abuse history, and still can’t get your meds, especially when those meds aren’t even highly regulated.)

I’m sitting here now, wanting to sleep, with my mind wandering between so many different things. I know it’s the steroids, and the lack of sleep from the past two days. I want so much out of life, and I’m afraid to talk about it. I’ll mention trips I want to take, and my immediate thought is always, “But I can’t.” Why not? Other chronic illness warriors do. Once your treatment schedule is lined up, and your personal treatments are manageable, why not?

For me to do the trips I’d want to do, I’d need to either figure out how to have my port accessed for fluids for the trip, or be trained to do so. Most trips seem to be 7-10 days, and while I could go without IV fluids, I’d enjoy myself a hell of a lot more with them. Why can’t I go visit family in Chile? Why can’t I go to Iceland and stare at the stars from a glass igloo? (Okay, well that one is because I’m poor…)

Going to Disney, or San Francisco, all these doable trips, I’ve been putting off so that I can do them when I can enjoy them. I have a wheelchair, I have infusion options. There’s no reason I couldn’t go to San Francisco and get a few fluid infusions while I’m there. If I could bring my wheelchair for heftier adventures, I’d have even more fun.

I’ve been trying to plan a healthy person’s life and I’m not healthy. I will never be fully healthy, though I hope to feel as close to fully healthy as possible.

IVIG isn’t a fix, it fixes the current issues, and keeps my Behcet’s in check, but I am not in remission. My GI issue, some related to Behcet’s some night, aren’t likely going to get a ton better with IVIG. That’s just the reality if my guts,

I need friends who are fine with the fact that going on adventures may mean bringing bigger bags. I mean, you can always hang them off my wheelchair…

IVIG is so Much Easier with a Port – Sick Chick Acceptance

Your Test Results are Abnormal: Wait…What?

Behcet’s is a bitch. Getting diagnosed takes a long time. My 7-8 year actual struggle to be diagnosed is so short compared to many patients. I did have symptoms as a child, but they were vague, and we weren’t really pushing to figure it out. With Behcet’s, a lot of the time, your lab results are normal, or normal enough. You may have markers for inflammation, or whatever, but nothing that shouts, “Lupus!” or some other autoimmune disorder. This was me for years. I had a positive rheumatoid factor once, but it was a low positive, and while it has popped up positive here or there, never strongly so. Getting diagnosed was symptom based, and then I got tested for HLA-B51 and that cemented that yes, it was Behcet’s.

During the Behcet’s struggle, there was the little fact I was having weird episodes that looked like low blood sugar, but weren’t. Then I started having what appeared to be strokes, but weren’t. Then we had the full blown seizures. They were infrequent at first, but as time progressed, became more and more of an issue. This all coincided with my Behcet’s (which wasn’t diagnosed at the time) getting worse. Even when the Behcet’s diagnosis came, nobody could sort the seizures out. I was told I had partial seizures, the drunken feeling episodes/low blood sugar feeling episode, as well as the stroke episodes. I was also told that those generalized into full tonic-clonic seizures.

Except all my EEG tests were normal, so every time I moved, it was hell. I was sent to at least 6 or 7 psychologists because neurology determined repeatedly that I did not have “true” seizures, but pseudo seizures. 

I found a neurologist I loved, he started treating me, we got my seizures under control with medication, something that apparently isn’t common with pseudo seizures. We would do EEG tests from time to time, and they were always normal. He never forced me to go to psychology. He told me time and time again that they were seizures, and that not all seizures are easy to see on EEG, and that you have to be having one for the EEG to catch it.

So today…I’m put off by a nurse practitioner I’ve never seen before going over my chart, but she’s so sweet. I told her I was there for a routine follow-up, and to discuss decreasing my Keppra as I’ve had no seizures since starting IVIG. We chat about balance issues, and I again tell her that I’m always going to be off, but that I look “normal” when IVIG is working, and just get drunk when it’s time for more. Then she mentioned that there was a note to go over EEG results. There were two, one was from the company that botched my first one, only I didn’t know that, so when she said she couldn’t read it, I was so annoyed because I was not doing a third. 72 hour home monitoring is itchy, and when everything is always normal, it’s just a waste of three days. She clicks on the second, and I tell her, “I’m honestly not worried if it doesn’t pop up, they always come back normal, I’m used to it by now.”

Now…we’ve established I have seizures. She knows I’m 100% aware that I have seizures, and other severe health issues, so she’s comfortable with me, and says, “Oh, no, the results were abnormal.”

I pause, because what, and then I remember that sometimes one side of my brain is faster than the other so I am assuming that she means that, or some other nonsensical anomaly. “Oh, yeah, sometimes they say one side speeds up, it’s always normal in terms of anything significant for my seizures.”

“No, actually, we did catch abnormal electrical activity that allows us to diagnose you with epilepsy verified by the EEG.”

So I burst into tears, terrifying the NP, who hands me a box of tissues thinking she’s ruined my life. I have to explain to her that it has been years…12 in fact…and I’ve been literally ignored in ERs while seizing because it wasn’t a “true” seizure. I’ve been doubted. Sent to shrinks. I’d actually been kicked out of practices because they called me a liar. After that she was teary eyed.

For now, I still have to take tons of Keppra and a little Vimpat, but in 4 months we are going to start trying to decrease based on the improvements IVIG has had. Turns out my doctor asked another hospital to admit me for IVIG because of my severe neurological state…they admitted me, but decided IVIG was pointless, instead spending 9 days of random things until doing steroids. Steroids worked, but as I weaned off the symptoms came back.

I won’t lie, I’m a little bitter. I could have had IVIG 2 years ago. Where would I be now? It’s frustrating because I do want to settle down with someone, have a life, however that life ends up being, and I’ve spent so much time being sick and waiting for treatments to work.

But I won’t be totally bitter. I will mourn what I experienced, and hope that it helps others in some way, as we navigate this awkward journey. 

Your Test Results are Abnormal: Wait…What?

Neurobehcets – When it Doesn’t Make Sense, but Does

Prepare yourselves for a little breakdown of my neurological funkiness, and what may or may not be related to the Behcet’s (but probably is). The reality is we don’t have a way of knowing exactly when my Behcet’s began, though likely in childhood. We also have no way of knowing when my neurological issues began with Behcet’s, though the thought process right now is somewhere in my teens.

My oral ulcers started in late elementary school, and we just figured I was a kid who got a lot of canker sores. I also got a lot of strep throat. Then in middle school I had these annoying episodes where one arm would jerk, and I would make a squeaking noise. I never saw a doctor, because it didn’t happen often enough to create concern, but it was annoying. (I would later be diagnosed with Tourettes, however, the occurrence is so infrequent, I never even remember to mention it in my medical appointments.) In my late teens I started to notice I had crappy balance.

This is where it gets important: the only reason I noticed, was because my friends pointed it out.

When we would all walk together, the ongoing joke, which was also the truth, was that everyone needed to walk on my right side. I tended to veer right, and if the group didn’t stay on that side, I wouldn’t walk straight, and would end up missing the conversation, or even trip. At 16 I’d torn a disc in my back (at the time we didn’t know the disc was injured, it took five years to get a scan, but that’s a whole different story). When I’d get wobbly or off, we just sort of figured it was back related.

Then in college, at 18, something scary happened. I got up out of bed, and my right leg was useless. I could move it, but I couldn’t really control the movement, and I couldn’t keep my foot up. A friend helped me get to the health center, where we found out I had no reflexes in my right leg. He hit my knee over and over and nothing. I was told I likely had a pinched sciatic nerve, aggravated from the prior back injury (which still hadn’t been scanned) and sent back to my dorm with crutches.

Yay student health systems! 

By 20 I knew I had something autoimmune going on, but my brain wasn’t really a concern. I had a seizure, but I’d been drugged, so the thought was obviously that the drug had induced the seizure. I developed PTSD, and future seizures were assumed to be psychosomatic. Except, they weren’t. I had also begun developing issues before my PTSD, where I would get dizzy, lose feeling and coordination on my right side, and begin to slur my words, or forget them all together. It was terrifying, and I’d often just have to sit in stores and wait for it to pass.

Eventually I saw a neurologist who misdiagnosed me with juvenile myoclonic epilepsy. The drugs made me sick, and my balance issues and lapses in focus continued. I would be okay, then have intense headaches and be stuck inside for days. Sometimes they’d say it was a migraine, but other times they couldn’t sort it out. There times when it was so bad I refused to go to the ER because I didn’t want to get up off the bed or floor. Once I dropped in the kitchen from the pain, and just laid there for nearly four hours.

A new neurologist saw me, and looped back to psychosomatic issues. They diagnosed the Tourettes which was random, but inconsequential with all the other issues. Thus began a decade of neurological struggles. Some neurologists believed me, others insisted it was a psychological issue causing seizure like episodes. We took videos of muscles spasms I couldn’t be controlling. We took videos of me trying to walk during episodes. We did whatever we could, but if it wasn’t on an MRI, they didn’t care.

I was actually blacklisted from a neurologist’s office because he was sick of me demanding that he figure out what was going on. Another told me I had MS, before later telling me he was wrong.

My current neurologist is amazing, and has stated that he believes my issues are 100% because of my Behcet’s, but he won’t diagnose neurobehcets because I don’t meet all the criteria. The only criteria I’m missing is sign of brain stem atrophy, or lesions. I’ve been receiving treatments since before neurological issues presented, and in fact, the neurological issues worsened and became noticeable, when I was on a hiatus from immune suppressing therapies.

I never really thought my neurological issues could be related to my Behcet’s, until I noticed the lack of coordination coincided with flares. Then I thought back to all the years, all the signs, and my heart sunk.

So now I’ve seen the new rheumatologist, and he, without a moment’s hesitation, declared neurobehcets as the culprit. True, I don’t have lesions (yet) or brainstem deterioration (yet), but isn’t that a GOOD thing? Even textbooks on the issue of neurobehcet’s have admitted that the criteria that exists is based on limited patient samples. Plus the reality is that it’s a rarer complication of an already rare disease. In my case, having the HLA-B51 subtype does put me at an increased risk of certain neurological impacts of the disease.

The question becomes what are my issues from NB (neurobehcets):

  1. Ataxia
  2. Seizures
  3. Fatigue
  4. Lack of coordination
  5. Muscle weakness (especially in heat)
  6. Hyperactive reflexes (makes anything that triggers involuntary movement in my legs extraordinary challenging to deal with. Shivering? Game over.)
  7. Headaches
  8. Autonomic neuropathy – which impact me thus far via:
    1. Issues with regulating heart rate and blood pressure
    2. Digestive issues, primarily lower GI issues involving intestinal dysmotility, and also aggravation of my gastroparesis
    3. Temperature regulating – this becomes a problem with things like hot baths/showers/tubs, or if I have a seizure. It’s normal to get warm during a seizure, but I struggle to come back down temperature wise. I also don’t get fevers when normal people do, sometimes. It’s frustrating to have a severe and painful kidney infection, but no fever. Doctors don’t tend to take you seriously

I’m sure that there are other issues I’m not even aware of, because I’ve just lived with them as they’ve shown up in my life. A friend was staring at me as I missed the keyhole several times. It’s normal for me. I didn’t realize until that moment, that most people can put the key, into the keyhole, without several bother attempts. I’d simply been doing it that way for a long time. The odd thing is, I never missed a vein when I was a phlebotomist, but I also would shake violently after each patient, and be exhausted after my shifts. I was also healthier at that time.

Acute NB tends to hit, and then go away. It can come back, but a course of heavy steroids, often IV, tends to knock it out. This is what was assumed to be happening when I was hospitalized a year and a half ago. Now, at the time, they didn’t know what was going on, so for six days we tried to deal with my heart rate being all over, from too high, to way too low. I couldn’t walk, because I shook to hard. When they stopped my Neurontin, my jaw locked shut. Finally they gave into rheumatology’s suggestion that we throw steroids at it, just in case it was related to an autoimmune issue. They’d done spinal taps, MRI’s, I’d coded, it was time to just do something.

Three days on IV steroids, and I was discharged with a walker.

I tried to point out that it was a classic acute NB flare, but because my spinal tap had been normal, as had what they could see on the MRI before I had my seizure in the machine, they refused to diagnose me.

As the steroids tapered down, the instability, and coordination issues returned. That was when I went to NYU, started Remicade, and then promptly ended up on Cytoxan.

Now I’m ready for my next round of IVIG. I notice the disappearance of the non-permanent neurological issues. I’ll always have ataxia, but the really obvious manifestations don’t come during the first 3 weeks of IVIG. The headaches are gone. Knock on wood but I haven’t had a seizure since starting IVIG, either. My hyperactive reflexes are permanent, but they appear to be limited to my legs right now, and mostly my left leg which makes sense. (My right leg is somewhat dumb from the back injury.)

I’m just happy to start over with a rheumatologist who is ready to fight as hard as I am. I loved my old rheumy, but her refusal to consider that I may have issues that were NB, because I missed the imaging to support it, was upsetting.

Why should I be forced to get sicker, when I’m clearly responding to treatment, and have all the symptoms of the disease?

Advocate for yourselves. Fight hard. The wanted to put me in a nursing home after I was discharged from the hospital. I had friends help me so I could get to NYU, and get options I wouldn’t otherwise have. You are stronger than you know.

Neurobehcets – When it Doesn’t Make Sense, but Does