Reflections and Fevers and Dehydration (oh my)

This staph infection sucks in a bizarre way. It’s relatively healed but of course I need to keep taking antibiotics. I won’t finish the full course, and I never do. My doctors are okay with it at this point given how horrendously they impact my body. I wasn’t able to go get blood work done today because the man delivering my wheelchair had a fever, so he moved my appointment to Wednesday. I need the chair to get to the lab, therefore, no blood work.

In any event, the blood work is for the allergist, and until that is done, antibiotics and I are still not on great terms. Of course, infections and I don’t get along so well either. He had explained that my body may be hypersensitive in general, and any infection, certain drugs, and certain foods and drinks, can all trigger allergic type responses. The idea makes total sense to me, given that I’ve told nurses for years, “I’m allergic to nothing and everything,” to explain random bouts of hives. It just sucks that Tylenol does nothing for any of my pain, and is now the only acceptable pain reliever per the allergies.

Yes, the doctors did okay the discontinuation of antibiotics early, if my symptoms had resolved. No, I’m not lying.

There is a valid reason for this aside from the allergy issue…antibiotics just make me really really sick. I’ve had suspected C. diff on more than one occasion, and after weeks of constipation, I am officially no longer backed up, courtesy of the Keflex. Of course any antibiotic can cause diarrhea. They treated me for C. diff once, without culturing me, and it resolved, but I hadn’t finished those antibiotics either due to an allergic reaction. Why not get tested to see if it’s hanging out in my gut? First off, you have to have diarrhea to have the test done. (You can only provide a liquid sample. No solids at all or the test can’t be done.) Secondly, I don’t want to be put into isolation for-freaking-ever.

I’m not explaining to anyone who ever visits me in the hospital, that I’m in a gown and whatnot room, because I’ve got C. diff just hanging out in my bum. 

Yes, I know it isn’t that dramatic, but please. I have so much going on, I don’t need that added to it. The antibiotics have somehow increased my bowel movements, but decreased my appetite. I think the low grade fever and nausea is probably to blame. As much as I need the wheelchair as soon as possible, I’m also dreading it. There is something about a power chair, that for me, seems so much more dire. I see someone in a manual chair, even if it has some sort of power assist, and I figure they’re okay. I see the power chair, and my mind just goes straight to sickly things. I feel weird that testing showed that as the best option, even though I know with my hyperactive reflexes and ataxia that it makes sense. I guess I’m just insecure.

Now to go and walk the dogs with a fever, the shakes, and dehydration. I did manage to drink some of a cherry slush, and eat some tots to provide my body with some needed salt, but I simply don’t feel like waiting for an elevator and going down 24 floors. This move can’t come soon enough. The idea of being just 2 floors up, and better yet, not being in a city with the rats, cockroaches, and hepatitis A outbreak. The rat realization was new, and while I love them as pets, the ones that live on the streets definitely harbor disease. It’ll be nice removing that element from my daily struggle.

It’s hard explaining to people who think you look like you’re doing well, just how much effort it takes to put on that facade.

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Reflections and Fevers and Dehydration (oh my)

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

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?!

Gastroparesis:1, Me:0

A few years back, prior to my Behcet’s diagnosis, I was having some serious GI issues. One of the concerns was gastric emptying, so my GI doctor ordered a gastric emptying study. At this point in time I’d had some major issues with constipation, as well as weird diarrhea even though imaging would show I was still constipated. That is a special level of fun, to be in the ER, massively struggling with diarrhea, while doctors remain confused because you’re clearly backed up on imaging. Anyhow, my new GI doctor was amazing, and ordered the study to see what my stomach was doing. During the study, the medical facility screwed up. Despite being told I couldn’t eat dairy, or gluten, they provided me with toast, milk, juice, two eggs, and some peaches. I hate peaches…but without them, I’d have only eaten juice and eggs. I choked don the peaches, eggs, and juice, and was told not to bother with the two pieces of toast, or the glass of milk. This wasn’t the proper protocol, because while they were checking to see how the eggs went through (they had the radioactive tracker on them), you’re still supposed to be measuring the gut emptying with all that stuff in it.

I had only eaten the eggs and some juice.

When they did the testing I wasn’t dealing with extensive symptoms, but I did test just over the time limit. (I think they said you got 90 minutes to empty your stomach, and I took 92 minutes.) The doctor said I had some mild gastroparesis, but was bothered by the fact I hadn’t eaten as much as they would usually feed patients. Sorry, but it definitely wasn’t my fault that I wasn’t fed things I could actually eat.

Now, years later, with my symptoms completely kicking my ass, the have definitely diagnosed me with gastroparesis, and the oh-so-fun issue of periodic intestinal dysmotility. What is that you say? Well, it’s period of time when my intestines decide they’re just not going to move effectively…or even at all.

You want to confuse the hell out of an ER doctor? Go in for abdominal pain, and watch their face when they realize you don’t have any bowel sounds. They tend to change stethoscopes, look at you with a smile and confused eyes, before finally realizing there is no sounds at all.

I’ve gotten used to living in this space where I’m just not hungry. Sometimes I’m even nauseas. During chemo I got breaks where the steroids would instigate hunger, and I was moving things along…but now I’m back to feeling gross and not having much motility. One day a week I’ll have a bunch of bowel movements; Sometimes I’m lucky and get a second day, so it’s less horrendous. I take medicine, both traditional and alternative, to help with the nausea and appetite issues…but this can lead to more problems.

When you eat, but you’re too slow to process the food, things get gross. 

I definitely need to throw up right now, but once I start I can’t stop. All I’ve eaten today is two cups of cereal. The problem is I ate a lot of cereal yesterday, because my GI system had been moving the day before…but it has since stalled. Now everything I’ve eaten in the last 24 hours, is just sitting and it’s painful and nauseating. I made the mistake of giving into hunger rather than following the strict limits I know keep me from this level of pain. This morning I literally thought I’d ruptured something because I couldn’t stand straight. It was so bad I gave my dog to my roommate because I didn’t know if I could continue to walk him today and tonight.

On the 1st of December I’ll see my new GI doctor, and we can hopefully sort out treatment options. Personally I’d love to just swap to liquid food and not have to think about eating for enjoyment anymore. I just want to get adequate nutrition without having to think about it. We know a few things contribute, including a blocked celiac artery, and poor blood flow in general. I also have ulcerations that can tie things up. The diet I need to follow excludes so many nutrients, though. I would love to eat a salad. It sounds so insane, but I definitely miss salads!

Fresh fruits, fresh vegetables, meats, fried foods (except for french fries for some reason), dairy, and anything high in fiber? They’re all not tolerable. Fruits and vegetables are definitely the worst, and anything high in fiber.

Today will be spent sipping on water, enjoying my carafate, and wrapping my abdomen in a heating pad. My abdominal pain actually making me short of breath, and my eyes are watering because I’m trying so hard not to throw up. This is the reality of GI Behcet’s. I just hope I never have a rupture, or full obstruction. I’ve had a few partial obstructions, and pseudo-obstructions. I don’t go to the ER anymore unless the symptoms prevent me from urinating. Yes, I’ve been so blocked up, I couldn’t even pee. That was a horrible situation because the small town ER didn’t really know what to do with me. They kept giving me enemas, and all I was doing was bleeding as the enema liquid came out…I also was throwing up some gnarly stuff until I was dry heaving. That was enough to make me try to avoid the ER after that.

Keep your chin up folks. Even when you’ve had tubes shoved in horrible places, things go on. Today I’m grateful for the people who help me while I struggle. I’m grateful I found a free version of my textbook, at least I think. I’m grateful for my dogs. I’m grateful for friends who bring my dog  home for Thanksgiving so he can be spoiled. I’m grateful to be crashing somewhere that doesn’t smell like my apartment smells.

Find the things you’re grateful for.

Gastroparesis:1, Me:0

Things You Wish Came With Chronic Illness…and My New Treatment Plan

I’ve been in bed most of the day, though I do count my trip to take the dog out, and my shower, as huge successes. Currently I’m realizing that I wish my Behcet’s came with a care package, or a monthly subscription box of surprise necessities. The following would seriously be on the list:

  • Comfortable Blankets
  • Fleece Socks
  • Heating Blanket
  • Heating Pads
  • Ice Packs
  • Naproxen
  • Serenity Essential Oil (DoTerra)
  • Peppermint Oil
  • Maid Service
  • Pedialyte Pops
  • Carbonated Water
  • Amazon Gift Cards (so much to read!)
  • Pajamas
  • Comfortable Sheet Sets
  • Wheelchair Gear

I’m sure I could think of more things if I didn’t have an enormous headache. The cause isn’t clear, though I suspect a combination of factors. For one thing, I’m stressed. Financially things in my life are just a total wreck. This divorce has dragged out, as has my application for disability. Without a settlement regarding alimony, I don’t know how to set a realistic budget. Currently I’m not getting enough to survive, and to make matters worse, my book stipend has disappeared and my food stamps have been challenged along with my electricity discount.

Then there is the horrendous weekend I had. Don’t get me wrong, there were good parts, but being reminded repeatedly that your illness makes you different in negative ways, isn’t fun for anyone. Now my vape charging cord is missing. It could just be at my friend’s place…but it wouldn’t be missing at all, if the negative Nancy who thought it would be fun to rub my illness in my face, hadn’t dug through my backpack. I resorted to using my little bowl because it’s all I had, and my lungs quickly reminded me that they are not okay with that option. This has all resulted in my not having access to the vape. I rush order batteries and a charger that *may* work, and it’ll arrive tomorrow…but in the meantime I have to rely on less reliable options for my nausea. Nothing really works for the pain so I’m just living with my heating bad glued to my belly.

People think I’m all for the legalization of Marijuana, but what they don’t understand is that it’s a complicated issue for me. I do think that it’s relatively safe, compared to alcohol, but unfortunately legal recreational use means I’ll never have it covered by insurance. I have an appointment with a gastroenterologist, and I’ll ask him about Marinol (which is a drug that has synthetic THC). The issue with Marinol is that patients have reported it isn’t as effective as actual Marijuana. Not a total shock given that it’s only the THC portion, and not the other ingredients found in the actual plant.

This brings me along to my treatment plan. My rheumatologist talked with the big doctor at NYU that I saw just once, and the current plan is to increase my Mycophenalate by another gram…meaning I’d take 3 grams daily, either in three separate doses of 1000mg, or two doses of 1500mg. In case I haven’t been clear in prior blogs, I’m not a huge fan of increasing the Mycophenalate. When something doesn’t work, after a period of time, I get antsy. My neurologist wanted me to get more chemotherapy, because neurologically there is a concern that permanent damage could occur. They’ve increased one of my seizure drugs, Vimpat, and I’m already beyond the max effective dosage of my Keppra. If I’m still dealing with GI issues, neurological issues, and other signs of seriously active disease, then we’ll move to immunoglobulin therapy, IVIG. Both doctors feel that plasmapheresis would likely be ineffective with my current manifestations.

Personally I’d like to do IVIG immediately. I understand the need to go through less invasive treatments first…but this whole being miserably sick thing, gets old. I have an appointment to see a well rated gastroenterologist on the 1st of December. Even though he’s well rated, my expectations are guarded. For years GI doctors treated me like I was a psychiatric patient. I was diagnosed as anorexic and bulimic, despite repeat testing that showed blood in my bowel movements. My gallbladder actually began to die in my body, it was so severely diseased. During my laparoscopic surgery, they almost had to switch and do a full open procedure. The surgeon was concerned that the organ was so badly diseased, it wouldn’t hold up to laparoscopic removal .

Yes, you read that correctly…my gallbladder was so diseased, they thought about cutting my abdomen open to remove it, because they thought it was going to fall apart inside my body.

If you’re wondering, I have a great pain tolerance.

The gallbladder fiasco aside, there has been a lot of shrugging off of symptoms over the years, along with lost medical records. I’ve had far too many endoscopies and colonoscopies. I don’t want more. We know I have GI Behcet’s. We know I get bleeds. We know that I’ve had ulcers in my lower GI tract. We know I’ve had stomach ulcers. Why the hell would we put me through another prep, put me under sedation (which is an issue for me), scope me, and ultimately end up with inconclusive results? The nausea is from gastroparesis, but that testing wasn’t done properly either. I don’t know about the rest of society, but I really don’t want to eat more radioactive eggs, and I definitely don’t want to eat the entire meal you have to eat for the testing.

What happens if you throw up during the gastric emptying study? Do they make you eat more?

I am keeping an open mind, I just really hate the whole new doctor process. Explaining to the doctor that, yes, I really do have Behcet’s. The gluten factor is an issue as well. Some doctors are okay with someone who wasn’t diagnosed with Celiac, avoiding gluten, while other doctors are absolutely disgusted by people who don’t have Celiac avoiding gluten. I did it on my doctors recommendation, it worked for some of my symptoms, so I have continued with the diet.

My biggest GI doctor concern is how he’ll handle my use of Marijuana. I would eat 1/3 of what I currently eat, if it weren’t for cannabis. If you include how often I’d be vomiting, it would probably be less than that. I credit marijuana for helping me drink water, too. Gastroparesis is no joke, and when your intestines join the dysmotility party, it’s extra miserable. Warning: TMI information regarding poop ahead…read at your own risk.

I’m lucky if I have a bowel movement one day per week. Lately I’ve had to rely on laxatives to even have one movement per week. Even though it causes bloating and nausea, I’ve started eating dairy to get things moving along as well. The problem is I still don’t go daily…instead I seem to get one day of horrible cramping, and I got a lot. It isn’t diarrhea, but I go several times, and each time I get sweaty and w ant to throw up. My body seems to suddenly become an overachiever. It’s the lazy student, who procrastinated, but then decided to try and graduate with honors.

I will literally go days with only a few gurgles to suggest my stomach and intestines are even moving at a snail’s pace, sometimes I’ll go almost 24 hours without a sound at all. Then, on P-Day, my system goes wild, and the pooping commences

Aren’t you so glad that you’re reading this blog?

GI will weigh in on the treatment plan, but I’m hoping to get a few options for managing symptoms. Critical for me would be IV fluid therapy. Just going in 2-3 times a week, to bump up my hydration, would really work wonders I’m sure. I’d also like some better nausea management skills. It would be great to get IM options for some of my medications, but dosing makes that impossible. I don’t want a port, at all, because they terrify me, but moments like this make me think about how nice they can be. IV nausea medication would change my life, but the cannabis is probably safer!

Right now I’m in Victoria’s Secret sweat pants, some random free t-shirt, and fuzzy socks. I’m covered with a gorgeous fleece blanket, both dogs, and I have a heating pad across my abdomen. Bonus sick-chick points for the literally seven pillows I have in play to keep this blog post, and myself, together.

There is no correct treatment plan for all patients with Behcet’s. We all have different expressions of the disease, different tolerances for the various medications uses to treat the disease, and different personal views on being sick. Right now I’m just repeating that to myself. I want there to be a linear path I take towards wellness, but that isn’t how illnesses like this work. I know I need to stay positive. I can’t control the various things the disease decides to do, but I can combat them with the right tools. One of the biggest tools in my arsenal, is a positive attitude.

Things You Wish Came With Chronic Illness…and My New Treatment Plan

Neurological Symptoms Getting Worse

Things haven’t been good, and between the livedo reticularis getting seriously bad, and my neurological symptoms flaring horribly, I know that my Behcet’s is winning. I’ve been on a steroid taper, but there just doesn’t seem to be much relief. I went to neurology today, and we’re increasing my seizure medication and my neuropathy medication, but he really doesn’t have a ton of faith that it will help my symptoms, including my shakes and ataxia. It could help other issues, but there really isn’t one drug to help my specific set of neurological symptoms.

We don’t know what is happening in my brain/spine/nerves to cause my shaking, ataxia, and hyperactive reflexes. I present a lot like an MS patient, but I don’t have MS. Also, because the symptoms get worse with flares, and do improve slightly during high immune suppressing treatments, it makes logical sense that it’s related to my Behcet’s. With my GI system crashing though, there is a question of how to adequately treat most of my symptoms…while also having to embrace the reality that I’m sadly unique in how my neurological symptoms present.

Today the doctor mentioned IVIG, but we aren’t there yet. I’ll bring it up with my rheumatologist next week, just to see if that combined with other therapy options is an idea. I’ve also read some things about plasmapheresis, though again, it would be experimental because Behcet’s is so rare. If I had to do more chemotherapy to live independently, then obviously I would, but I’m desperate to try other options first. Some of the things I want may seem odd to someone who isn’t chronically ill, but for me they’re everything.

First and foremost, I want a port. I know there are a lot of risks, and the risks do scare me, but because I’m so hard to stick, if we were to take on another IV treatment, I would want to have an easy access situation. The other benefit of a port, is we could talk about hooking me up to IV fluids, and even IV medications. With my poor GI motility, it just makes sense for me to bypass my stomach for a lot of things. My seizure meds, and my immune suppressing drugs, as well as my nausea medications, are the first things I think of. Also, I have to choose between eating or drinking, which sucks. It is so painful to do either, that I’ve been giving up on food so I can drink enough fluids. Doctors are still saying I’m dehydrated though! This has gone on for years, with doctors always insisting I need to drink more water, but my body just can’t handle more water orally. IV fluids at home would really benefit me, even if we just did them every other day.

The second thing is the wheelchair, and while I’m disappointed at needing one, I appreciate that it will be a tool for me to use to become more independent. At this point, they have approved me, so I’m just waiting for the company to get in touch, and to work on what kind I’ll be getting and when it’ll be arriving. I’m still really embarrassed to need one, but I’ve fallen several times in the last few weeks, and with my diet so limited, the weakness is even more pronounced. We know from the way my body has declined in the past, that my neurological symptoms are only going to get worse. It doesn’t make sense for me to put pride over my well being. If I wait until I’m fully unable to walk, then ask for a wheelchair, I’m going to be stuck waiting for however long it takes.

The third thing is nutritional supplementation. I refuse to get an NJ or an NG tube placed.  I would likely need an NJ as my stomach is the issue, and they’d want to bypass my stomach. My gag reflex is just too strong, and living with a tube from my nose into my intestines would not be something I could handle. I also don’t feel like I’m sick enough to warrant a surgical feeding tube, and wouldn’t want one anyhow. I can still intake things orally, and I feel like if we got the right supplements I could get by. I’ve been choking down Boost, and I can tolerate potatoes, PBJ (sometimes), and sorbet. My issue is I’m not getting enough protein, or other nutrients, on my limited diet. Today I had a cup of sorbet, and that was it until 6 when I forced myself to eat some potatoes. If you’re wondering, it hurts, and I’m miserable, but at least I kept it down thus far.

I need a support network. I need people who get what I’m going through, and don’t judge me for being negative. I had a friend who was really close to me, who had multiple medical conditions as well, so I’ve been venting to her about my health lately. She is also someone I go to when it comes to how to date with chronic illnesses, and how to talk about health issues with someone you care about. Unfortunately we’re not friends anymore. She felt as though I was becoming wrapped up in my illness and letting it define me, and that my casual dating situation with the guy I’ve been seeing was unhealthy for me. Yes, I want to find someone to seriously date, but at this point I don’t have the energy to put into dating. (Not to mention I can’t eat much, and alcohol is a big fat no at this stage.) Yes, I have other positive things going on in my life, but everything has changed course because of my illness.

If you’re reading this, and you have a chronic illness, don’t feel bad about feeling bad! When you find yourself in a rut because your disease has taken over, it’s okay to process it for as long as it takes. In my case, I began losing more and more things that I’d discovered about myself in the last two years. After my marriage ended, and I was free from an abusive situation, I really started to find who I was as a person. Then, my disease progressed, and I began to lose things I’d started to enjoy. That process is ongoing, which means my frustration and sadness is ongoing. I don’t dwell on it publicly but I do vent to friends because I need help finding me. Yes, finding yourself is a personal process, but I think being sick it’s important to have people in your corner to help you. If I didn’t talk about my health, I can honestly say I would get lost in suicidal thoughts.

Really? Yes, really. There have been points in this journey where I’ve just wanted to die, and I think it’s something anyone with a chronic illness deals with. Whether or not you’re truly suicidal, or just feeling overwhelmed and the thoughts crosses your mind, it’s a real issue that requires real help. I am on anti-depressants, and I’m setting up more counseling sessions. I don’t want to actually die, so I need to make sure my mental health is being handled by professionals.

Please seek professional help or go to your nearest emergency room if you are feeling suicidal. Various countries and states have numbers you can call if you need someone to talk to. Call 1-800-273-8255 in the U.S. for the National Suicide Hotline. You can also chat anonymously. 

So that’s an update on my situation. My brain is starting to become worthless, so I’m off for now. Please address issues you have with your illness, and know you aren’t alone if you’re depressed or anxious. We can get through it, you can get through it. Your life (my life) OUR LIVES, are worth fighting for.

Also the only thing that’s working on my nausea is medical marijuana. That makes the part-time job hunt harder because I can’t take anything that they drug test for. At the end of the day, I can’t work if I’m up all night dry heaving, so it’s worth it for me to forgo those positions in lieu of the medical treatment that actually works for me.

Neurological Symptoms Getting Worse

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

So one of the hardest part about this relapse, has been adjusting back to a life where I really don’t eat effectively. I’ll be calling a gastroenterologist, and nutritionist, but I know the testing they’ll force me through will be miserable. I’ve lost count of the times I’ve been scoped, and we never learn anything new. Major gastritis, the occasional rectal ulcer, and overall miserable inflammation. I know I have other ulcers, but I’ve never been able to manage getting scoped during a severe flare. While I realize it would be theoretically valuable I’m not sure what the actual point is. We know I have Behcet’s. Hell, the mention of potential vascular digestive disease, was noted years before my diagnosis, but never mentioned to me. The doctor actually wrote, “possible GI Behcet’s,” with a question mark, in my chart, but never informed me, or my primary care physician.

A few years ago I’d adjusted to the fact I didn’t eat much. I was losing dangerous amounts of weight, of course, but it hadn’t really even phased me. I didn’t feel hunger, or thirst. Often I’d go until the evening before realizing I hadn’t eaten anything, and had only had maybe one drink. As dehydration became an ongoing concern, I made sure to drink…but it took force for me to do it. Eating never seemed like an actual priority, because I wasn’t hungry. There were times when I’d eat a granola bar, and feel sickly full for the rest of the day. I’ve eaten breakfast, and thrown it up at bedtime.

When I’m home alone, I don’t really think lately about how I’m not eating much. I force myself to put Boost on some cereal in the morning, and then drink G2, or Powerade Zero throughout the day. I opt for those, not because I want to avoid calories, but because they’re not as strong flavor wise as full on Gatorade or Powerade. Lab work has shown that my potassium and calcium are barely within the normal range, so I make sure to go for electrolyte drinks whenever I can. I’m already noshing on Tums like it’s my job, so I’m not totally sure why my calcium is low, but I can only do so much.

In public, my inability to eat is a whole different matter. It’s embarrassing. I met a friend for the first time this weekend, and it was so awkward to take her to brunch with a mutual friend, or order in food, and have to explain to her that I couldn’t stomach it. I ate half a piece of plain gluten free french toast, and felt like I was full of razor blades. I later forced myself to finish another full piece, and a half of another half, before having to call a quits. This was after the benefit of Zofran, and carafate. Following that it took several hours before I was comfortable enough to move around, and ultimately some medical marijuana to prevent the nausea from consuming me that evening.

After a weekend on the go, my body was protesting violently. I was drinking as much G2 and Powerade Zero as I could stomach, medicating appropriately, but crashing hard. On Sunday we were all going to the botanical gardens, and I figured if we parked close, and only did the gardens, I could push through it. There ended up being an event going on, and I couldn’t bring myself to refuse the idea of walking through the park. I knew on the way back from the fountain, as I insisted I needed some sort of beverage or preferably an  snow cone, that I wasn’t going to make it long. I’d accidentally left the G2 in the car, and even if I’d had it, my legs were just giving up the fight. Through the weekend I’d had neurological issues in terms of my heart rate and dizziness, but I’d managed with both medical marijuana, and some newly prescribed klonopin. (At night I use clonidine.) We all approached a shaved ice truck, but it was too late. I knew I was going down, and the only thing I could think of was to gracefully plop down in the shade under a tree, lay back, and try not to cry.

In the end my friend who was with me through chemotherapy, and everything else for that matter, came over, and noticed the tears in my eyes. The new friend was getting our drinks and shaved ice, and he assured me that it was okay. Nobody was judging me, and I would be back on my feet in no time. I just sat there, cursing my body for failing me. After a few minutes I was able to push myself into a sitting position, but I’d lost all feeling in my legs. They rewarded me occasionally with some muscle spasms, but remained totally numb. I was literally poking myself, and I couldn’t feel it. This was scary because while I’ve experienced the sensation of not knowing where my legs are, I’d never actually tried hitting or touching them to see if I could at least sense external stimuli. The answer apparently, in bad situations, is no.

Eventually I ate some ice, rolled a cold water bottle on my legs, and was able to walk to a bench with assistance. My new friend was sweet about the whole thing, and my other friend brought the car around. I was just embarrassed. I was also angry. I’d spent the prior week preparing for the trip with an ER trip, two doctor’s appointments, and IV steroids, as well as oral ones. (I’m going on a two week taper starting tomorrow). We knew I was flaring up, but I thought I had a handle on things, I just hadn’t known where the flare was headed.

One new sign of my Behcet’s has been the annoying development of something called lived reticularis. From what I understand they aren’t totally sure what causes it, but it’s found in patients with autoimmune conditions, and is thought to be an inflammation  and/or spasms of the blood vessels near the surface of the skin. Unfortunately for me, mottled skin in the abdomen is also a sign of some pretty serious, and even life threatening conditions. It’s also not as common in the abdomen, as it is in the lower limbs, which made the whole thing a huge concern for my doctor. It was such a concern, that when I emailed her on a Sunday about whether or not I should make an appointment for steroid injections for my other symptoms, and mentioned the “rash” with an included photo, she immediately responded and suggested I go to an ER for an exam, and IV steroids.

I wasn’t that concerned, but went into the ER anyhow. I’d been having GI pain, and figured maybe it would be a good idea to get the damn thing checked out. Plus, Sunday nights are usually slower in the ER, more so than Mondays, and my primary care doctor was on vacation. The ER was slow…but because of my medical history, and the look on the triage nurse’s face when she saw my abdomen, I was taken back quicker than usual. I also saw a doctor while I was still finishing putting on the gown. Blood work was taken, IV’s were started, and a CT was ordered. During the blood draw I kept clotting in the tubing. My IV actually blew, filling my hand with saline, and requiring a second IV. At this point they were very concerned about my vascular system. They informed me, up front, that there was a good chance I was throwing clots in smaller vessels, or even in larger ones, and they were doing the CT to check for abnormalities, the blood work was for the same reason, perhaps even more so given my severe allergy to CT dye.

After the IV steroids, I cried. The rush from the steroids, combined with finding myself in the ER, facing potential admission to the ICU, was just too much for my tired brain to process. When you spend six months enduring chemotherapy, only to face such a potentially severe complication of relapse, a part of you breaks. Luckily for me, a 4-year-old who was in a car accident with her parents, was put in the room next to me, and she was hysterically funny. This kid took an airbag like a champ, apparently had an abrasion on her forehead from it, and was laughing saying, “Balloon go boom in car, right on face!” Her parents were crying, and this kid falls off the damn hospital bed, lands on the hard floor (I heard her), and laughs going, “haha I fall!”

That kid pulled me out of a panic attack, allowed me to find a way to get the TV in the room turned on, and settle myself down.

In the end my tests were normal, but I was given the option to stay if I wanted to stay. They couldn’t guarantee that the vascular pattern was totally benign, but I also wasn’t ready to stay in the hospital. I went home, promising to follow up with both my rheumatologist, and PCM. I saw my PCM three days later, where I was informed that livedo reticularis, in my case (as well as in the case of many others), is merely cosmetic. Since being on low dose steroids, the appearance has lessened to some extent, though it hasn’t totally disappeared, and has had moments when it is definitely worse than others.

Additional issues have included an overwhelming increase in fatigue, as well as a significant increase in heat intolerance. I’ve spent an uncomfortable amount of time laying on my bathroom floor after baths, and really need to get a shower head that detaches so I can wash my hair easier. I gave up standing in the shower a long time ago, unless it was to rinse my hair, but even that has become a rather dangerous endeavor.

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis