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

A New Level of Exhaustion

The Medrol dose pack has been a bitch, and it’s efficacy is questionable. My neurological symptoms have dissipated, but my GI issues are just as prevalent as ever. I will say, I’m not bleeding as much, but I’m also constipated. Constipation is bad for hemorrhoids. It becomes this constant game of, “where am I bleeding from?” Also, there isn’t anything better for your romantic life, than having to explain why you can’t sit on that hard bench.

Abdominal cramping, and bloating, definitely suggests that the ulcers are still very much active. The question is if my muscles have given up. When I have a combination of ulcers, and hemorrhoids (even ones I don’t feel), my body instinctively just refuses to move the last bit of intestines/colon. Autonomic neuropathy doesn’t help the situation.

Then you’ve got doctors, and none of them agree when it comes to medical marijuana. One insisted it would constipate me, but because I’m chronically dehydrated, which is a large reason for my constipation, vaping actually increases my ability to drink, which in turn increases the chances I’ll have a bowel movement. (Also, feeling better in general, and being able to get up and move, even for 20-30 minutes, is going to increase the chances of pooping, too.) GI doctors are either very pro medical marijuana or anti MMJ. My current team was horrified to learn that I’ve been smoking, and they were quick to suggest my usage is what causes my nausea.

  1. I never smoked until I was so nauseas I was emaciated.
  2. The only thing that effectively even dents my nausea, is MMJ.
  3. Last time I was in the hospital, I was vomiting so much, despite the medications, my admission team, and the nurses, were completely hurrying to discharge me so I could get home and vape.
  4. Chemotherapy, happened.

And look, I’m not saying marijuana never causes nausea. Heavy users can actually develop nausea related to their usage. It’s a reason why I am pushing heavily for us to find a prescription option to manage my nausea. It isn’t my fault that I’m allergic to both Reglan and Compazine, and that Zofran and Phenergan, only last so long. I’m using peppermint like mad, and I know ginger is a thing, but it’s a thing that makes me toss my cookies immediately.

My only real relief is IV Zofran, which isn’t an option unless I go on port access 24/7, and have nursing teams come train me to use my port to administer medications and IV fluids. Hell, the IV fluids alone would change my life.

I am utterly exhausted.

This isn’t an exhaustion related to being chronically ill in general, this is an actual decline of my physical state to a point where function has become nearly impossible. While people expect me to bounce back and be spectacular because of IVIG, that isn’t the case. IVIG is a lifesaving measure. Try as I might, I can’t seem to make friends understand the reality of that statement. Yes, I have symptom relief with IVIG, of severe symptoms related to neurological disease, and bleeding ulcers. It won’t always work, which of course this month, it clearly didn’t. It also isn’t a cure. I will begin to feel sick as the time comes for another round.

Lately I’ve been back to sleeping large amounts. Some of it is the steroid taper, and the fact that the steroids can make sleeping continuously impossible. The rest of it though, is my body surrendering to the assault of my own immune cells. The pain, the utter fatigue, the need to sleep, it overtakes me on a regular basis. I try and tell myself I’m going to do all of these things, and then I feel guilty when I fail. My new thing is promising that I’ll try my best to do these things, and to set realistic expectations for myself, and anyone else potentially involved.

A New Level of Exhaustion

The Fear Factor

The first two rounds of IVIG went well. I felt great until about a week before my next infusion. This round, not so much. Not too long after the infusion, I had a massive seizure. Granted the pharmacy had been out of my one seizure drug for over a week, and I was dehydrated, it still worried me. Two weeks after the infusion, I had symptoms that were similar to a neurological episode. They faded, and I chalked it up to issues with low blood sugar from my gastroparesis. Then the GI bleeding started.

My infusion was on May 1st and 2nd, and I’m having an all out episode. The bleeding began about a week ago. I thought it could have been something I ate, but I wasn’t eating much. Instead of getting better, it got worse. Abdominal cramping set in, and I began passing clots along with large amounts of blood. Yesterday I brought myself to the ER. I was pale, and sweaty. I went straight back to a room. Blood work, a urinalysis, and a CT scan came back clear, but it was obvious that my bleed was not just rectal. They gave me a dose of IV steroids, and now I’m on a medrol dose pack. I’m also being told to drink a lot of water, and eat iron rich foods.

Fear creeps in. Sure, I was stressed, and pushed myself way too hard after this round of IVIG, but what if this is a sign that the IVIG isn’t going to work for me? I don’t have other options. Plasmapheresis was discussed, but the doctors said IVIG was a much better option. Some countries have done bone marrow transplants, with success, but I don’t want that done either.

I know logically that this was simply a bad round of IVIG for me. There was a ton of stress, I pushed myself physically too soon afterwards, and ran out of seizure drugs on top of it all. My goal for the next round is to be as calm and focused on positivity as possible. Perhaps my friend Amy will come with me, and we can go get reflexology massages (if I can find a place that just doe the feet). IVIG doesn’t work every round, at least not in the beginning.

It’s just a struggle. I’m so close to deeply into my thesis, and my body reminds me that I need to slow down.

The Fear Factor

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