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. 

 

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Governmental Nonsense and Way Too Many Tears

Port Placement and Panic

On the 11th I had my port placed. It’s funny, I’d spent months wanting it, but when the time came, I totally panicked. The idea of a catheter, just hanging out that close to my heart, suddenly had me second guessing my decision. The fact that some doctors were on board with the decision, while the others weren’t, didn’t help matters. In pre-op, the nurses couldn’t get a vein, so they called the IV team, they used an ultrasound, numbed up my arm, and went after a deep vein. The nurse told me that my veins are really small, and apologized for having to work hard to get into the vein. She also said I would be happy with my port.

I had to be at the hospital at 6am…but when I arrived, I wasn’t on the schedule. I hadn’t really slept the night before, so I ended up falling asleep and was taken to the pre-op area at around 7am. I still wasn’t on the schedule, but they said I’d go back by 9:30. 9:30 came and went, and at this point my anxiety is screwing up my vitals. The lowest my heart rate got was 99 bpm. My blood pressure was a mess, too. I didn’t end up going back until 1:30. By then, I was a mess. I’m begging for the versed, and worried that I’m going to just back out of the entire thing. There was a miscommunication between the nursing staff and myself. Basically I hate pain killers. They make me vomit, and I just don’t like the feeling as they wear off. Throwing up, shaking, cold sweats, it’s a disaster.

For some reason the nurses wrote down that I had a low tolerance to both pain killers, and versed. 

After several syringes, the frustrated nurse told me that I had a really high tolerance to versed, not a low one. I told her that I knew that. That’s when I found out, basically, that I hadn’t been given enough of either drug. I was a bit loopy, but totally coherent. The doctor started, and I hadn’t been told we were starting, and I felt pressure and blood.

It isn’t pleasant to feel your blood trickling down your neck.

The procedure went well, thankfully, and I went home, but panic was immediate. Every move that I made caused my neck or chest to twinge. I kept worrying that the catheter was going to stab my heart. I kept worrying that I was going to get a blood clot and die. I still am worried about the port, especially the blood clot issue, but I’m realizing how necessary it is. I haven’t had my infusion of fluids and vitamins in over a month. I am going in on Monday. It’s still scary to think about my port being accessed, but I need to get used to it.

I think part of the stress of the port, is feeling like I’m more sick. The port is going to improve my quality of life, but having it makes me feel like I have, “sick girl,” stamped on my forehead. If my gut wasn’t messed up, I wouldn’t need it. Well, I’d probably need it eventually for IVIG, but I’d have a while at least. Nobody will see it once the wound heals, unless I have it accessed, but it’s just a stressful situation for me personally.

I’ve met people online who seem to want to be sicker. They want the feeding tubes, the ports, the wheelchairs, and I just don’t get it. I’d love to fade into normalcy. I want a job. I want to drive. I want to go to a restaurant and eat something. I want my dogs to just be dogs, not dogs with jobs. At the end of the day, I can get back to most things. I may never be able to eat normally, but that’s okay, that I can work around. I would love to get IV fluids regularly.

Maybe it isn’t about getting back to how I felt before getting sick, but about learning to find ways to enjoy life and be happy with the life I’m living now. 

Port Placement and Panic

Medical Marijuana Discussions

I live in California, where marijuana is now recreationally legal. Anyone over 21, can go to a dispensary, and buy marijuana. There are regulations on where you can use it if you’re smoking or vaping, but other than that, it’s all fair game. As a teenager and adult, I never had the urge to try marijuana. Yes, I’d heard about it, but with all the medication I was already being put on and taken off of, it just seemed like a risk. Not to mention all the drug testing for school, work, and medical tests. Then the gastroparesis situation got dangerously bad, along with the Behcet’s, and you all know that story.

With the legalization of marijuana I don’t need to renew my medical card at the end of the month, but I likely will if I can find the funds, because it’ll entitle me to certain discounts, and provisions for having more in my possession than a recreational user. Not that I’ll ever have that much in my possession, I’m way too broke to store that much weed, but it’s nice to know that, were I to move somewhere that allowed me to grow some, I could.

Recently I’ve graduated to vaping a few times a day. It isn’t something I particularly enjoy, because for me I’d rather take less medication, including marijuana. I view it as both a recreational option, as well as something that has medicinal benefits. It’s all about how you use it. I would thoroughly enjoy the opportunity to join the recreational trend, and just use it periodically to relax, alone or with friends. Right now, I could theoretically smoke more with friends, or different strains with friends, and feel different than I do when I use it medicinally…but it sort of throws me off mentally.

How can something I rely on to avoid hospitalizations and severe dehydration, also be something I use for fun

My brain keeps comparing it to opioids because of what a professor said about the legalization of marijuana being a gateway to the legalization of heroin. Obviously he was off base, just based on the reality that heroin doesn’t have a direct medicinal use in it’s abused form…but it is an opiate. Opiates can be prescribed to treat pain. In fact, a lot of heroin users started by abusing pain killers. They switched to heroin because it’s cheaper. So what is it? What defines something as a recreational drug, versus something that is used medicinally?

In the end I think it comes down to how it’s used, and how it’s acquired. Yes, marijuana is legal in my state. If you smoke it until you can’t function, pay your bills, or exist, then you’re an addict akin to an alcoholic. If you use it periodically in a responsible manner, then you’re a recreational user. If you use it as recommended by a physician, then you’re a medicinal user. It seems simple, but people judge you anyhow.

Now that it is legal in California, people view my regular use of Marijuana, as though I’m some stoner who can’t get by without being high. Truth is that I’m rarely high unless I overshoot my intake, or change to a new strain that impacts me in an unexpected manner. 

I need marijuana, but only because Zofran can only do so much. (Not to mention waiting for it to kick in when you have gastroparesis can be excruciating. There’s nothing like taking an antiemetic and knowing you’ll probably throw it up…) If I can get a port, and start getting more IV fluids, then perhaps the nausea will be more manageable. As it is, I’m sort of low on options for treating the nausea. I can’t take any more Zofran than I am, and they would prefer I take less, because apparently there is a link between Zofran and an increased seizure risk. Phenergan increases your risk of developing a movement disorder, which is a problem since I’ve been on it so long. That caused a decrease in my dose, and I’m only supposed to use that as absolutely necessary. I’m allergic to Compazine. I thought I wasn’t because I didn’t have flat out dystonia like I did years ago, but after a few doses it felt like my muscles were on fire, and I was super twitchy.

Today I’ve had a bowl of gluten free macaroni and cheese, and two small rice crispy treats. I feel like I’ve eaten an entire family’s Thanksgiving meal.

This is life with gastroparesis. What I did eat, was courtesy of weed. I’m beyond grateful that I was able to even get that down. I haven’t had water today, just a little gatorade, and yes, I’m bad, I had soda. I’m working on giving it up, but I am addicted to caffeine. I’m also a graduate student with 2 weeks left of class before she starts her thesis, so I mean, it is what it is at this point. (Let’s toss in a personal life in turmoil, and finances in ruins, and I think we can excuse the fact that I consume 1-2 cans of cola a day.) Thankfully, for whatever reason, fizzy beverages are easier on my system than flat ones.

So yes, friends, family, and potential future people that I meet…I use marijuana and it has undoubtedly saved me from hospitalizations, passing out, and at one point, a feeding tube. 

On one side of the page is the list of symptoms relating to chronic illnesses you have, on the other side are the tools you have to deal with those symptoms. Ginger helps with nausea, it’s also totally legal for anyone to buy and consume because they just like ginger. It is possible for something to be enjoyable and fun for one person, while another person uses it for help in dealing with their health.

Medical Marijuana Discussions

I’ve Always Wanted Fuller Lips…But Not Quite Like This

After a few days of stress, and feeling like garbage, I was pleasantly surprised to be feeling pretty good after taking a couple of naps. Everything was going fine, until my lip started to tingle. I was annoyed when the tingly feeling shifted to a burning. Investigation showed some redness, and by then my lip was basically numb. I nonchalantly mentioned that I thought I was getting some oral ulcers, before asking if my lip appeared swollen.

Within five minutes I went from how I usually look, to having a pretty seriously swollen top lip, numbness in both lips, numbness up my nose, and some selling in my cheek. Even my tongue was numb in parts, and my hard palate was almost totally numb.

It has happened before, but I just assumed it was related to the Flagyl I’d been on at the time. Now I have to wonder if there was something else at play. After an extraordinary high dose of Benadryl, things settled down a bit. My lip was (and still is) sore, as are parts of my lower lip, and tongue. I did have some increased swelling again this morning, so I took more Benadryl. My primary care doctor is phoning in an Epi-Pen just in case, and I have an allergist appointment on the 5th of February.

I laughed it off, but the person I was with at the time was slightly less amused. With how quickly the swelling came on, and spread, he had legitimately worried that he’d have to rush me to an ER, or even call an ambulance. I can look at the situation logically, and appreciate his fears. Looking back on it, I’m lucky. The numbness moving down the roof of my mouth, into my gums, and even parts of my face? That’s serious. If it had moved down my throat, and I’d lost the ability to breathe, it could have been deadly.

For years I was told I didn’t have nice lips. (I have perfectly normal lips, just for general information.) When I’ve had instances where my lips tingle or even puff up a little, I just chalk it up to blow flow, and feel grateful. It took this level of severity, to realize the periodic episodes of hives without a cause, and now this, are definitely a sign that my system is not in synch.

My theory is twofold. The first scenario is that my immune system is screaming intruder as though an allergen is present. The result is a flurry of histamine and other responses, leading to hives and/or swelling. The second scenario is that I’m actually having angioedema, and not an allergic type reaction. There have been a lot of cases in which someone has an autoimmune disease along with angioedema or mast cell activation syndrome (MCAS). I don’t think it would be MCAS, as I don’t have (at least not yet) symptoms of anaphylaxis. What I do have, are these episodes where it seems as though the blood vessels in my lips, mouth, and perhaps cheeks, all want to allow the area to expand.

I can’t know, of course, and I doubt doctors will have an easy answer. I will presumably be getting allergy testing done, but with the gastroparesis, I’m not expecting a huge change in my diet. It would be nice to know for sure what I should avoid, and extra nice to know if I am truly allergic to several medications, or if my body was just going rogue because I was ill.

Alas, I can save money on lip injections, but I won’t know for sure which areas will be plump, and I won’t know how long the plumpness will last. (Let’s not forget the lisp, either!)

We joke, and we laugh, because we’re alive.

I’ve Always Wanted Fuller Lips…But Not Quite Like This

Happy Holidays, and Gross Poo Talk

So this year I wasn’t able to fly back to see family, which was definitely a bummer because I haven’t been able to the last two years either. With the illnesses going around, and my general poor health, flying just isn’t an option right now. While my seizure drugs are currently doing a good job, flying is a high stress situation for me. That means I don’t sleep well prior to flying, and I also tend to get nauseas so I don’t eat much either. Anyhow, an amazing friend and his family offered to have me up with them on Christmas day. I ended up staying a couple nights before heading back down to San Diego. It was really amazing, minus my body being a pain in the rear.

Currently the GI issues are the biggest thing. I’ve reached a state of low nutrient intake, and low calorie intake. This has amplified the brain fog I was already dealing with courtesy of the neurological issues. My friend and his family were amazing. They had foods on hand that I could eat, including specially mate potato pancakes without onion so I wouldn’t hurt my stomach eating them. I felt kind of bad because I only ate two of them. I also only had 4 pieces of the bread they’d bought for me, too.

The issue is that I have a partial bowel obstruction. I’ve had them before, and sometimes I can clear them on my own, and other times I have to go into the ER for some really horrible assistance. I have no desire to have the doctors give me high strength laxatives, and enemas. I still have 2 months before GI will see me, and I have to have a bunch of testing between now and then that they want me to complete.

It’s like the doctors don’t realize that there is nothing that needs to be tested for. We know I have gastroparesis based on a test done several years a go. Yes the testing was done poorly, and I was barely over the line, but what does redoing the test prove? Also, the only reason they want the abdominal MRI is because I have stenosis of the celiac artery. I get that it’s super rare to have it the way that I have it, but we also know that this kind of thing can happen with Behcet’s patients. While I go through all of the scheduling and testing, we’re wasting time. I’m struggling, losing weight, and losing focus.

I went from super focused in classes, with high marks, to a struggling student who can’t stay focused, and who is barely getting by.

This will be a short post just because I can’t focus, and may need a nap, haha. I’m still putting my hopes into IVIG. I want it to work, and I want to function again.

Happy Holidays, and Gross Poo Talk

Inhale, Inhaler, Asthma, Weed?!

Disclaimer: The information below is not meant to be medical advice. What works for me, is what works for me. You should consult your physician to get information and guidance on what would be best for you and your situation.      

_______________________________copingwithbehcets________________________________________                       

I’ve gotten a lot of judgment for my use of medical marijuana, so I thought a formal blog addressing it would be a good idea. Today I was reminded that I should address it, because I had to use my nebulizer for a severe breathing attack. I was using the carpet cleaner to clean up my roommate’s dog’s urine. (She has what I like to call “on purposes” because she doesn’t accidentally pee…she just pees.) Anyhow, the spot was quite saturated, and as I got it clean, I started coughing. Really coughing…and then the thick mucous came up.

Have you ever coughed so hard you can’t inhale? You’re coughing and coughing until your body decided maybe vomiting would be easier.

Luckily I didn’t vomit, but it was close. I spent some time on the bathroom floor recovering, but still couldn’t breathe well. I dragged my nebulizer to my room, hooked it up, and instigated the opening of the airways. This meant more coughing, more spitting things up, but ultimately finding oxygen.

Then the steroid jitters kicked in.

The good news was that I was able to finish some of my homework. The bad news was that the shakes continued until the nausea became unbearable. I took the last Zofran tablet in my possession, crossed my fingers that I could get a refill ASASP, and waited for it to kick in.

The thing about severe nausea, especially gastroparesis related nausea, is that staying still and trying not to think about it, doesn’t make it get better. The discomfort grows and grows. 

In the ER I’d beg for IV Zofran immediately…but at home, I don’t have that option. When I hit that wall where I know I can’t go more than a few more moments without vomiting, I reach for the marijuana.

But you said you had asthma?!?!

Yes, I do have breathing difficulties. Perhaps smoking marijuana isn’t the best thing in that situation…but all medications have side effects. First and foremost, I don’t smoke marijuana. It is too harsh, and always causes me to need my inhaler. In a pinch I’ll have someone shotgun me some, but it isn’t the preferred method. I use a vape.

I use a high end vape.

Truth be told, I need to replace the screen, but the biggest thing is that I control the heat, and the filtration is amazing. Within a few minutes my nausea is gone, and I don’t cough, choke, or need to use my inhaler. My doctors who are okay with medical marijuana, are okay with my methodology, though they would prefer I use edibles. The issue with edibles for me, is the same as the Zofran situation. I need the drug to work fast. Plus my digestive system is slow and inefficient in general.

They do sell  ODT Zofran that does act faster, because it dissolves under your tongue.

The reason I don’t use the ODT option is personal, so please don’t assume you’ll have the same issue that I have. Since I am generally dehydrated, my mouth is almost always dry. This isn’t related to vaping marijuana. Even if I haven’t vaped in days, my mouth is like cotton. The ODT therefore takes forever to dissolve. I also can’t tolerate the taste. Most people find it pleasant, but when I’m in a position where I’m going to vomit, the only thing I can tolerate is the taste of peppermint. Usually I pop an Altoid, or put peppermint oil on my lip, after vaping. I really can’t taste anything else when I’m at that level of nausea.

If I had a port, I would smoke a lot less marijuana. I have a nothing against people who use it medically or recreationally. Prior to using it myself, I thought it was stupid, and while I do know folks who have faked medical conditions to get their medical marijuana card, I also have seen folks like myself who do really need it. For the first time in a long time, I learned what it was like to go out, and not have to worry about nausea taking over my evening. If I use the right strain, I can conquer my stomach, and drink water, or work on homework. At the moment the strain I have was cheap, but insanely strong. It works, but it is making me just a bit too relaxed to focus on anything remotely complicated.

So yes, I have asthma, and I use marijuana. I am in no way endorsing this practice, or saying that you should vape if you have marijuana. My current situation makes medicating me difficult. There is no option for my gastroparesis. There is also no real option for my Behcet’s, though we may attempt IVIG. Right now I’m just popping mycophenalate like it’s candy, even though I could never eat actually candy without getting seriously ill.

Inhale, Inhaler, Asthma, Weed?!

Realizing I’m Not Procrastinating…and It’s Okay

So I’ve been trying to do homework for the majority of the last few days. I will get some done, but inevitably fall asleep, or lose focus. Prior to getting really sick, this wasn’t an issue. I could watch complex shows, and catch on quickly, every single time. There was no such thing as me not being able to focus on an assignment. Sure, I’d procrastinate, but when I sat down to actually do the assignment, I’d do the assignment. Today, I sat down to do the assignment, and I simply couldn’t answer more than one question at a time without requiring a break equal to the amount of time I put into answering the question…or even longer.

I’ve had to accept a few things about this whole prospect. The first thing is that I’m under an insane amount of stress, and that stress breeds an inability to focus. Even if you want to focus, and aren’t actively thinking about bills, and you know, dying alone…you’re still stressed somewhere in the back of your head. Oh anxiety and depression, you spiteful little bitches you. The second thing, that is really important to acknowledge, is the sheer amount of medication required to keep me alive. Some of which causes sleepiness, while others make it hard for me to sleep. Even the marijuana I use for nausea can make me lose focus. Of course without it I’d be throwing up, or focused on trying not to throw up, so I guess that is a matter of perspective. Fourth, I’m not eating normally. My GI motility has seriously taken a nose dive, and this makes me bloated, nauseas, and unable to provide myself with proper nutrition. Lastly is just flat out brain fog itself, as a result of the nutrition, but also because of my brain.

I have a neurological condition, and sometimes the most basic activities require more energy for me, than they would for the average human. My brain itself is also not running on all cylinders.

When my muscles are fatigued, or weak, I have to really focus on not falling over. When my balance is off, which is always, I have to deal with the same thing. I stopped to really think about my movements the other day, by watching how other people moved, and I was forced to admit that I really do walk differently, hold things differently, even sit differently. A lot of what I have to do, takes more effort, and therefore makes me more  tired. Therefore…my brain is just spent.

Brain fog itself is a problem. They don’t know what causes it, or why, but some of us folks with chronic illnesses, just lose our abilities to focus. It used to be every so often, but lately it’s more often than not. When someone tells me I’ll like a show, I have to say I’ll watch it, but then admit to myself it’ll take a special situation for me to actually watch it. I don’t want to miss things, or not enjoy it, simply because I’m working hard to focus on it. The last time I watched a show I actually enjoyed, I fell asleep during the second episode. People assume that means I’m not interested, but the reality is the opposite. I get so interested that I’m trying harder to focus, which results in my falling asleep, or losing focus. Literally can’t win!

So, now that this is done, I shall go back to trying my best to finish some homework before bed. It’s hard because I used to be the night owl who could write an essay in an evening. I don’t know how to adjust to being the student who can’t stay awake, and has to plan out her coursework meticulously in order to get things done on time.

 

Realizing I’m Not Procrastinating…and It’s Okay