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.

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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

Revisiting Original Content – My Ex, My Friend, and of course Dating

Okay, so it’s time for a bit of a flashback Friday. Without digging back into original posts, I’ve come to realize that there has been a bit of discussion regarding my personal life, and how my personal life has contributed to my struggle with Behcet’s. After some thought I’ve decided not to delete those posts, but instead, address my situations (past and present) in a new posts.

I got married to my high school sweetheart literally 10 days after I turned 20. At the time I didn’t see red flags, nor did I think anything other than we were young, and we’d need to grow together. That isn’t quite how things turned out. Within a few days of our wedding, he was deployed with the Navy. Within a month, I was sexually assaulted over a period of about a week by a mutual friend of ours. That horror was pursued by an investigation that was marred by, frankly, a ton of disinterest. Civilian officers had other more provable cases to deal with, and military police just wanted my assailant out of the Navy. He was discharged on “unrelated” charges, but it was sort of common knowledge that they didn’t want to deal with the rape charges.

After all of this there was a disconnect between my husband and I. My PTSD from the assault formed the framework for some insidious abuse. Mentally and emotionally I was stripped down, called worthless, and even a whore, despite the fact that the assault was not my fault. Looking back, there were signs before my PTSD, that he simply didn’t think like most people I’d known. He had an entitled air about himself, like the rules and laws shouldn’t apply to him. There was grabbing, shaking, and pushing. He also liked to speed, and then slam on the brakes to scare me. Once I ended up in a shoulder sling because he slammed the breaks while I was turned begging him to stop the car.

This blog post is in no way a post to bash my ex. He has moved on with his life, and I don’t wish him harm or anything negative. The only time I think about him is when I have to stress out over our ongoing divorce (two years and counting), and when I think about his fiancé and their son. I want her and that baby, to be treated wonderfully, and I never want her to feel isolated or alone. Everyone needs someone who can help them if they need out of a bad situation, no matter how amazing your significant other may seem.

That disclaimer out of the way, there was another man I spoke about who was always referred to as my friend or “friend”. Things with that are pretty much the same. I’ve let him set the foundation for whatever it is we are, and we go with what we are collectively comfortable with. While there is a part of me that desires that stereotypical romance with hand holding, and PDA, there is the part of me that recognizes the important part of any relationship, is the care and support you provide one another. We’re best friends, and while I’d be upset if we were only friends with nothing else romantically linked to our friendship, I would be fine so long as he was happy and found someone to make him happy. I know he feels the same for me.

People tell me  constantly that I need to go on dates. They want me to see other men because they feel that two years with one man, without much traction towards official milestones is ridiculous. There are moments when I have to agree. I want to live with someone for practical reasons. I like to cook, and wipe down dust, and I also like to have someone to go to bed with, and split bills with. What I don’t want is to ask. How awkward would it be to tell someone that we function well together and should give cohabitation a shot? I could easily rent my room out, which would reduce rent at my old place, but ensure I had a place to go back to if things at the friend’s place didn’t work out. Alternatively I would my belongings into storage regardless. I would never move in with a man, and not keep my stuff in storage if there wasn’t a place for it in the home/apartment we were renting.

I need a safety net. My dating life was difficult, but that’s an understatement. Falling in love for me is a neurological state of being. Our brains release chemicals, and those chemicals cause euphoria, relaxation, happiness, and in high enough doses, we interpret it as love. Love is real…but it can be explained by science. I want to feel it, and to know that someone feels it coming from me, too. Even overwhelmed by those chemicals, I know I would still put my stuff in storage for when the chemicals wore off. Anyone can love anyone in that chemical soaked place, it’s when you’re pipes have burst, and it’s 3am, and the carpets are being destroyed, that the love you share is tested.

Even if I wanted to date…how could I? I think I’d mentioned in prior blogs how miserably my dates had been before I met my friend. Do you want to be stared at funny, and have men walk out during the appetizer round? Show up and order no food, but a Sprite. Decline the wine. Just sit there, uncomfortably, sipping on soda and making small talk. I’ve had a lot of men unexpectedly get calls that they had to go to the hospital, back home to do work emails, etc. Eventually I just tried to get them to meet me on dates that didn’t involve food or alcohol. Wasn’t easy.

Yes, my divorce still stresses me out, but I let my lawyer juggle the more stressful parts. It would be easier if I didn’t need to pay to keep insurance, but I do. As we move towards procedures that can caused upwards of $10,000 per infusion, it’s important that I keep coverage. Often times my struggle is perceived as refusal to accept the divorce. All I want is to be divorced. If I could work, I’d have signed already, but I need the support while I’m getting back on my feet.

A friend I had but may have lost, mentioned that lately I seemed to be consumed by my illness, and my special friend. Well, my illness has been flaring a lot, despite doing all that chemotherapy, and my special friend has been supportive but must be getting sick of always being the one that has to be there for me. I wanted this other friend to support me as I navigated alternative options for treatment. Instead I received harsh criticism. I’m too focused on my illness and the guy I’m seeing, I’ve lost myself.

No…I’ve found myself.

I am sick. We can sugar coated it with “spoonie” terms and phrases, but I am sick. I’ve begun compensating for deterioration in my nervous system, but people around me have noticed. Missing buttons on the elevator, falling and being unable to catch myself in time, horrible forgetfulness. Add in the sleeping for 10-12 hours at a time (at least) and you’ve got yourself one flaring chick.

It’s okay that I’m sick!

 I don’t have to be one thing. I can be sick, separated from her spouse, in an unconventional relationship based on attraction and mutual respect despite not using labels, sick, and still be me. Just because I talk about the things that I’m struggling through, doesn’t mean I’m not a student working hard on there M.S. in forensic studies. A lot of forensic jobs happened to be part-time, so maybe I can push to try and get my treatments so I have energy to look into the job market.

If someone where to ask me if I were single. I’d say technically yes. They’d as why, and I’d say I have a friend with benefits, but that it’s sort of a complicated version of that fad. He’s my best friend, and the rest is just bonus add ons. If someone were to ask me out, I’d politely say that I’m not in a place where dating is a good idea. My health needs to be more stable so that I don’t back out of too many events.

My prior relationship was a huge source of stress. Having that weight lifted through this divorce, has been amazing. My body is still recovering from chemo, and new meds, but the less stress I experience, the better. Hopefully the divorce with finalize soon, for both of our sakes!

I’m exhausted, so this post may be a little all over the place. I meant no disrespect to my ex, his wife, and his child. I honestly just want the best for the family they’ve created. I chose not to have children with my ex. We were like oil and water, we didn’t mix, in fact, we were more like thin paper and a burning match. We would come together and ignite, eventually destroying whichever one of us drew the short straw, and wound up as the paper doll.

So to recap:

  • Ex is still in play because the divorce isn’t over
  • Friend is “friend” is best friend, and regardless of where life takes me, he’ll always be special to me
  • Dating around isn’t doable because my stomach and neurological issues make most dates impossible to plan
  • I don’t hate my ex. I may hate some of the actions and words that he’s engaged in, but I don’t hate him as a human being. He’s moved on with his life, and I just wish the best for his fiancé and child

 

Someone needs to invent a Tinder for people with disabilities and chronic illnesses…but we’d have to weed out the folks that have a fetish for that sort of thing.

Revisiting Original Content – My Ex, My Friend, and of course Dating

Happy Thanksgiving…Send Sorbet and Hugs

I was actually excited for Thanksgiving. Even though I can’t eat much with the gastroparesis and intestinal dysmotility, I was going to be spending time with a friend I haven’t really had a chance to spend time with in years. Then Behcet’s decided it would be a good time to struggle with horrible headaches. I had a ride to LA, but given that it would take 2-3 hours without traffic, or just normal LA traffic, I knew it wouldn’t be the best decision to go. I pushed myself for the musical, then last weekend when another friend came in from out of town. My body is showing the effects.

It’s frustrating. I would have rather spent Thanksgiving with my friend in LA, but because someone else had non-refundable tickets to visit last weekend, what I’d have preferred became unobtainable. If I’d utilized the wheelchair option at the zoo, I likely would be feeling much better right now. Don’t get me wrong, I’d still be stuck in this flare, but maybe it wouldn’t be this bad. Maybe going up to LA would have been the thing that pushed my symptoms over the edge.

Thanksgiving has always been one of my least favorite holidays, anyhow. My stomach issues have been in play for quite some time. Any holiday with a focus on food, is going t be low on my list of preferred holidays. Still, I wanted to see my friend. Symptoms wise, the headaches have gotten worse. I know I need IV steroids, nausea meds, Benadryl, and something else that always forget about. The glorious migraine cocktail, just tweaked a bit. We are 100% sure that my headaches are vascular spasm related, but nothing over the counter works on them. The headaches were bad enough…but then the oral symptoms arose.

I have GI ulcers. I know I do, because of the situation with my bowel movements. They’re infrequent because of the motility issues…but I do have a whole lot of scabbing and skin coming out. Normal people would probably panic, but for me? I’m just glad there isn’t too much blood. To make things extra interesting, I developed a yeast infection. I have medication for it just always on hand, because the infections used to be so frequent. Of course the fun is figuring out what is ulcer related, what is yeast related, and whether it really matters because you’re already taking all the meds you can anyhow…

Then last night, there was some fun. I’ve had some mouth pain and swelling, which I attributed to a few ulcers, and the likelihood that I was brewing up a few more. As the pain got worse, I focused on my chronic state of dehydration. Maybe I was in pain because my mouth kept getting so dry. Last night I ate some gluten free crust with just feta on it, nothing else. I followed that up with a Pedialyte ice pop. I’m eating this ice pop, when I start to wonder two things: the first was, “why does this ice pop make my mouth burn?” and the second was, “what is that taste?”

It turns out my mouth was bleeding. Not in a few spots…just literally all over blood, oozing out of what must have been super tiny blood vessels. 

Yeah. Thanksgiving is hard when you have slow or even no motility in your stomach and intestines. It’s hard when you have GI ulcerations. It’s hard when you aren’t allowed to drive, so you can’t be at all the fun events. Thanksgiving is impossible when your mouth is on fire, and actively bleeding whenever you eat.

All the doctor’s are gone for the weekend, so I’m going to check out urgent care tomorrow if things get worse. The headache needs a cocktail I can only get in the ER, but I’m borderline functional right now. I’d rather sort the headache out at home, rather than expose myself to the ER germ factor. My mouth is a whole other story. I’ll be making some Jell-o this evening, and looking into getting some liquid food options. The most likely culprit is a combination of arteritis, oral ulcers, and thrush. With the seriousness of the yeast infection I have, I wouldn’t be shocked to find yeast was also hanging out in my mouth. It’s gross. It’s painful. It’s embarrassing.

Needing a hug boils down to the reality I’m living in. My dog needs shots, I’m running out of items to sell, and I can’t afford to get textbooks, or even feed myself, if the money I should be getting for my book stipend, food stamps, and disability, never comes. I want to work. That’s the thing people don’t seem to understand. I apply for part-time jobs that I could theoretically do via a wheelchair…but there is a pretty major limit when it comes to the availability of such jobs. My education, my prior experience, it just doesn’t lead to jobs that I can do in my current shape.

I see everyone around me being normal, and I get so frustrated that I can’t just go and be normal, too. This is one of those days where I want to kick, scream, and cry. My body is sick, and aside from brain fog, my mind isn’t. Sure, I have neurological issues, but my mental abilities don’t match with what my body can do. Hopefully the doctors will be willing to push up my IVIG plan. It’s a long shot as it is, but with the symptoms lingering around, I’m willing to take all of the shots available.

Happy Thanksgiving…Send Sorbet and Hugs

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

I Can(t) Do It!

It was a rough weekend. Despite doctors’ orders (yes that is plural), I pushed myself and went to the zoo, hung out with friends, and generally pushed myself too far. My gastroparesis had been brutal. When you have plans, but not enough nutrition or fluids, those plans become more complicated. Throw in the added benefit of an autonomic nervous system that doesn’t know how to actually regulate things, and you get a disaster. The first day/night with friends ended with me watching everyone eat, while I sipped on water and ended with me stumbling home looking drunk because my blood sugar was painfully low.

The next day was the zoo, and while various doctors have requested I used a wheelchair during such outings, a new friend became overbearing with her questions. Did I want it? did I need it? Wouldn’t it be easier to get one in the beginning? Whether or not she intended to be condescending, the various questions regarding how I was feeling, along with her actions, made me feel like a complete invalid. Did I actually need a wheelchair to navigate the zoo? Absolutely. Was I willing to admit this? No way.

I did make it the entire day without a wheelchair, but it wasn’t easy. I opted to forgo food, minus two packets of mini-cookies. I drank an Icee because I knew it would get me both water, as well as sugar. That Icee was probably the only reason I lasted the entire day. My good friend was impressed by my ability to push through and make it through, while the vibe from the new friend was less than stellar. I didn’t really have time to process her confusing judgment of my state of well-being. I was seriously hurting.

As I sat in the car, I felt my muscles give up. Somehow I managed to get out, to the restaurant, where I again watched everyone eat, and then I managed to get into an Epsom salt bath. If you’re wondering, this was great for my aching muscles, but terrible for my autonomic neuropathy. Luckily the apartment was super cold, so I didn’t have too much of a struggle.

So what was the correct course of action? I should have used the wheelchair, or not have gone at all. It’s hard to admit you can’t do certain things, at least without assistance, so sometimes those of us with chronic illnesses end up making ourselves sicker. Today I’m miserable. I had to eat more to account for the calories burned at the zoo, and the muscle tremors that developed after, but my stomach can’t handle it. Worse? The lactic acid build up is making me feel even more awful. I wanted to show someone that I wasn’t an invalid, that I could do what everyone else could do.

I think I also wanted to show myself I could be “normal,” too. 

Take a break. Say no. Use the damn wheelchair. True, it may suck, and it may make you sad or angry (or both), but it’s better than brutalizing your body. There are times when pushing yourself makes sense, and there are other times when you just have to take the loss for what it is. I am sick. I have autonomic neuropathy, and Behcet’s, both of which contribute to my gastroparesis and intestinal dysmotility.

I was thrilled today when my stomach grumbled…but my intestines decided they weren’t going to play along. It ought food sitting in my stomach was bad, but I’d forgotten how bad it feels for food to sit in my intestines or colon. I left looking seriously pregnant, and with horrible stomach pain. This is just my life when I don’t play by the chronic illness rules. In no way am I complaining, or asking for sympathy…I just know that this is something other people with chronic illnesses need to hear.

When you’re put in a position with someone who judges you because of what you can or can’t do, the medications you take, or your illness in general, find a way to politely explain the reality of your situation. If they fail to respect you after that, then politely remove them from your life. There will be people who judge you, push you beyond what is safe, or even try to take advantage of you because you’re sick and they perceive you as weak. Don’t let people who don’t respect you, or accept you, run your life. 

I am who I am, and I have what I have. Treatment options are still being evaluated. Picking on me when I just finished a steroid taper, and can’t eat enough to prevent chronic hangry-ness, is really a bad idea. I am grateful that I managed to keep it together, though, because the urge to fly off the handle was strong.

Truth be told, I’m extremely sensitive about my health. I don’t like feeling weak or vulnerable. I can logically accept the reality of my situation, but it doesn’t mean I’m prepared when people are hostile or demeaning. Even if I were to see a list of the good things I do, and the good things about myself, I would feel as though my health eclipsed all of that good. Even though I don’t define myself by my illnesses, I feel as though my own identity gets lost behind what my illness pushes to the forefront.

I can go out, but I can’t walk long distances without assistance.

I will gladly go with you to a restaurant, but I cannot eat food. 

I can stay up late, but I’ll need to nap and sleep in. 

I can be your friend, I just may not always be ready to go at a moments notice.

The biggest thing is that I am still myself. I like to volunteer, read, and look for nerdy t-shirts. I love my dogs. I’m a student. I’m a nerd. I’m an introvert that likes live music. I am so many things, but I’m also sick. Perhaps I haven’t fully accepted the reality of my illness. Even if I were to go into remission tomorrow, I would still have what I have. I would still need to be vigilant about what I am exposed to, and any potential symptoms that arise. My wheelchair won’t be something I love, but it will be something that allows me to do the things that I do love.

So, if you’re struggling today, know that even those of us who look like they have a handle on things, struggle, too.

You are stronger than you know.

I Can(t) Do It!

Fun Fried

So my friend drove us up to LA on Wednesday, and back on Thursday. We left San Diego at about 4pm, arrived at the theater around 7:20, and the show began at 8pm. Afterwards we had a 30 minute drive to his parents place, plus a stop at McDonald’s to grab some food. All I’d eaten that day was four pudding snack packs that morning. I made sure to drink some Sprite during the show to keep my sugar up. I had a few fries, but ultimately couldn’t eat much. On Thursday morning I acquiesced, and ate maybe 2 eggs. It was a struggle. I couldn’t drink much water accept to take my pills. On the 3 hour drive back I made sure to drink some diet Pepsi to get my caffeine fix (I get headaches without it), and some water. Both were difficult because the egg was just sitting in my gut like a rock. When we got back to San Diego, I was sort of on autopilot. Some stressful things had happened with my roommate, and I was trying to just remain calm about all of it by detaching myself from all of it. That kind of came to an end when I stood up to get my bag, and the world went spinning.

Two(ish) eggs, a diet Pepsi, and some water, does not sustain you for 9(ish) hours…especially when you take a second to realize you’ve consumed nothing with actual sugar in it. Oops.

I managed to get some Gatorade in, and a few bites of a rice crispy treat bar, sat up, got up, and went into my apartment where my small dog immediately began alerting. He wanted me to sit down, immediately. I obliged, and forced myself to choke down the rest of the cereal bar. Normally I love them, but I wasn’t hungry. It was literally just something I needed to do. I was running on 5 or so hours of sleep, no sugar, and I was edgy.

Now, I’d like to point something out…I do not regret going. The show was absolutely amazing, and the seats were front row center. All the physical suffering after the fact was 110% worth it. The issue is just not knowing how sick you’ll be afterwards. I knew I’d be tired, but I hadn’t expected this level of exhaustion, soreness, or dizziness. I could use a liter or two of fluid, but I’m still waiting to see if there is a way to have it done at a doctor’s office rather than going into an ER or urgent care. (I would go into urgent care if needed, but I’m trying to avoid as many germs as possible right now.)

I’m also having to process the new treatment plan. We’ve increased the cell cept, again, which sucks given my already persistent GI issues. If I don’t see adequate results by January, we will look at starting IVIG. That is, of course, if I’ve managed to keep my insurance. Plasmapheresis is not an option, at least at this point in time, per my rheumatologist, and the rheumatologist at NYU. I am doubtful that the increased dose of cell cept is really going to make a difference, given that 2 grams hasn’t worked, but why not give 3 grams a shot. At least I’ve got some extra padding to make up for the weight I’m losing, but it’s still not great to see your body give up like mine has.

Do the things that you really want to do, as long as you’re not putting yourself in mortal danger. I’ve started realizing that trying to do everything is a bad move. I just agree whenever someone suggests something, and I end up with a daunting schedule that I know won’t be doable. Then I find myself crying and stressed because I feel like a failure. I end up feeling like I’m letting everyone down, despite also knowing that I’ve given it my everything.

My GI appointment is on December 1st, though, which gives me some hope. The lack of motility in my stomach and intestines has really started to create a lot of problems, as has the nausea. If I do eat, I know I’ll pay for it with pain and nausea. The only way I can have a bowel movement is to take a lot of softeners and laxatives. I don’t want to be dependent on them, but by day 4 or 5, I start to worry I’ll end up with a pseudo obstruction again, and an enema. ER enemas are not my friend…insert enema enemy jokes <here> haha.

I don’t regret Hamilton, but I do regret committing to plans I can’t get out of this weekend. It’s a huge struggle right now to just get up and get in the shower because I’m honestly that exhausted. I also know I need to take my cell cept, but I don’t feel like gagging all afternoon when I need to be packed and out the door in about 4 hours. This is the reality of chronic illness. You can be positive most of the time, but sometimes it’s okay to just look at what you’re dealing with, and say, “Wow, this really sucks.”

I also may have forgotten to do homework this week…which I just realized as I was writing this. Time to shower, pack up, get my wheelchair, and find a way to push through the minefield that is my current situation. I just can’t wait until Monday, when I can catch up on some sleep and focus on myself.

Fun Fried