To Port or Not to Port…and how to ask the question!

During Rituxan, my nurses had noted that my veins were incredibly difficult to work with. This wan’t news to me. Every time I would go in for blood work, it would take multiple sticks before they accessed a vein. The only veins that work for me, are the veins in my hand. There are two exceptions, but neither is practical for every procedure or blood draw. The first exception is whatever sorcery the EMT’s and paramedics use. The only thing I can think of is that while I’m unconscious, or actively seizing, my veins become more prominent due to muscle contractions, and an elevated heart rate and blood pressure. They usually have to stick me at least four times, though, so it isn’t a total win even though they can get that one pesky arm vein. The second exception was what happened during this past hospital stay. After one nurse missed twice, and a second missed once, they asked for a doctor to help. The  doctor missed twice with an ultrasound machine as guidance. This was extra fun because of how deep the needle was during the process. I’d also been given nausea pills that hadn’t really worked, and no pain medications or fluids because, duh, no IV. They were drawing up IM medications when the special IV team arrived. They used another ultrasound machine, and even they struggled, but managed to get it in to a deep vein in my forearm. Luckily they used lidocaine that time, so it didn’t hurt nearly as much.

When I told the doctor that we were in the process of beginning IVIG, she said that it would be a good idea to get a port. I agreed with her, but admitted I was worried. Port maintenance isn’t a huge pain, but I do have vasculitis. I guess my fear is that the existence of a port, potentially increases my risk of blood clotting. (Granted you use heparin to prevent clots from forming, but still, terrifying.) I’m also afraid to ask my doctor.

If I had a port I’d have the option of administering IV Zofran and Phenergan, which would be an enormous help. Right now I’m using medical marijuana way more than I want to be using it. Having to use it multiple times, per day, just to function, is no way to live. I process nausea drugs quickly, so having a fall back option, like marijuana, is the only way I can be sure to avoid vomiting, and is the only way I’m able to consume anything at all. We could also talk with GI about home IV fluids, including banana bags to supplement all the vitamins and whatnot that I’m not getting due to my dietary restrictions.

Previously my doctor made it clear she doesn’t order ports for her patients, as most issues are temporary. I went through chemo, without a port, and it was hell on me and the nurses. Multiple nurses stated multiple times that I should have had a port placed. I was also not allowed to schedule any of the last spots of the day, as it took a good 20-30 minutes each time to find a useable vein. They couldn’t use hand veins, so we always used this same vein on the side of my thumb. It got really aggravated by the end of the six months, but could still be used. As an IV placement, it sucks though. It’s blown several times, and curves over 45 degrees.

I’m just anxious about asking. I’m also anxious about people looking at me weirdly. It’s easier to hide than a wheelchair, obviously, but it’ll still be there, and people may still ask. What will people I date think? How will I even be able to date? I could show up to most dates without a wheelchair, unless they wanted to go for a stroll afterwards. What happens when the time comes for them to see more of me, and this lump is right there by my collar bone?

It’s all hypothetical, of course, and I doubt my doctor will even okay the port…but I anticipate it is going to be necessary if and when we do IVIG. I just don’t have a good vein for it, and if we’re going to be doing it every 4-6 weeks, and if there is blood work like I’ve been getting, it’s time. Every ER doctor and nurse, has wondered why I don’t have a port. I’ve never had a valid answer other than, my doctor doesn’t think I need one.

I know myself. I’ll be anxious if it happens, and anxious if it doesn’t. If I do get one, I’ll be self conscious for a while, then snap out of it. The same goes for the chair. Maybe I wanted one with normal wheels instead of a power chair, but anything is better than my current situation, and I can always make it my own, make it unique.

Also, I’m 1/4 of the way to my goal on You Caring. I can’t wait to reach my goal, keep insurance, and kick some major Behcet’s booty!

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To Port or Not to Port…and how to ask the question!

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

Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Grieve and then Grow

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

Self Advocacy and Alternative Treatments

I am not a Google doctor…but I do have to do some research on my own behalf. With a rare illness, and even rarer manifestations of that illness, my own doctors often take to the internet in search of treatment options. Having failed literally all the conventional treatment options for Behcet’s, I’ve entered the realm of last ditch efforts, and when it comes to trying random things, Google isn’t really the worst thing.

The other idea is searching treatments for more common ailments, like Lupus and MS. Everything is theoretical, which would be fun on paper, but is much less fun in real life. The current idea I have, is plasmapheresis. Behcet’s is actually listed as one of the disorders plasmapheresis treats, but it’s not something commonly done. Whether or not my rheumatologist will be willing to try it, I don’t know, but I’d prefer to try something new, instead of committing to another round of chemotherapy.

How desperate do you have to be to ask doctors to literally filter all of your blood? I don’t know. I’m having constant tremors and muscle spasms, and neurology knows that this is the beginning of a serious neurological flare. Since we don’t know exactly how the Behcet’s is attacking my nervous system, it’s not possible to concentrate on the specific mechanism of attack. I compare it to a nuclear bomb. I know that we will be basically attacking everything, including the innocent parts of my body, but that’s what we did with chemotherapy, too. I’m embroiled in civil war right now. My body is attacking itself because it genuinely doesn’t know how to target the true hostile entities.

Another alternative treatment I’m already utilizing is medical marijuana. It’s something I never really thought I’d be a proponent of. As a teenager and young adult, I never even tried marijuana. It wasn’t something I was interested in. Then the nausea became unbearable, and I was going days without eating. Marijuana became the only option  I really had left. The effects of the right strain, are beyond description. IV Zofran is amazing, but not something I can do at home, and the oral options have to be processed before relief is delivered. I don’t always have 30-60 minutes worth of vomit avoidance in me. Marijuana relief is 5 minutes or less with vaping. The right strain (for me the best is Blue Dream) provides more relief than anything else I’ve tried. It also provides benefits beyond nausea relief, that would usually require additional medications.

There are those who judge me, and it frustrates me. I’m not vaping to get high, I just want to be able to eat some toast. I want a moment where I’m not consumed by nausea. Yes, there are strains I use that do cause a high, but I generally only opt for those strains if I can’t afford Blue Dream. The cost is, unfortunately, becoming something prohibitive. I’ve contemplated asking for Marinol, but because it’s a capsule, it still takes time to process. This is an issue because I have gastroparesis. You want fun? Struggle with nausea, but have a GI system that doesn’t process food, drink, and medication, correctly.

I don’t have a port. All of my chemo nurses, and phlebotomists, wish I had a port. If I had a port, we could get me IV medications, like Zofran, but my neurology team has begun to worry about Zofran anyhow. (Supposedly it has an increased risk of seizures, but so does severe dehydration.) I would love to do IV fluids. I would love to push most of my oral medications IV. All of this, but I would still utilize medical marijuana however possible, because it really does hit most of my symptoms effectively, and bypasses my horrid GI system.

Honestly, being chronically ill is all about finding what works for you. It starts with a wonderful medical team, extends to developing a support network, and ends with self advocacy. Some of my doctors aren’t big on medical marijuana, but after seeing me shrink to 120 pounds (I’m 5’10”) they mostly gave up telling me what I should and shouldn’t do in the marijuana situation. Vaping some weed was preferable to placing a tube for feeding me.

You are your best chance at receiving the care you deserve. It took me a long time to feel comfortable standing up to physicians, and asking for second or third opinions. I’m still not fully comfortable, but I know that I need to in order to get the weird care that I need. Having a rare illness can be extra challenging. There will be plenty of doctors who tell you that it’s all in your head, but if you know the difference between mental symptoms and symptoms of an outside condition, you need to push. I was told for years I was crazy…then they found out it was Behcet’s. Everyone who had told me I was nuts, felt bad, but I didn’t scream and shout, “I told you so!” I knew then, what I still know…I’m a weird rare situation, and it makes sense why nobody could figure it out for so long.

Be your own advocate, and seek advocacy if necessary.

Today I emailed a social worker to see if she could help me navigate the system I’m stuck in. If she can’t, then I’ll seek help during my next hospital stay. I’m not naive. I know there will be another stay, and it’ll likely happen sooner rather than later. As my symptoms increase, and my ability to care for myself decreases, the likelihood of going inpatient increases. Next hospital stay, I’ll be talking to a social worker affiliated with the facility. I want to navigate a difficult system, and I want to come out with whatever is best for me.

Self Advocacy and Alternative Treatments