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
- Serenity Essential Oil (DoTerra)
- Peppermint Oil
- Maid Service
- Pedialyte Pops
- Carbonated Water
- Amazon Gift Cards (so much to read!)
- 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.