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.

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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

Feeling Useless, and Calling Out Fakers

So my doctor has decided that the Azathioprine needs to stay in rotation, but we’ve cut me down to 25mg for a week, then increasing to 50mg after that…if I’ve tolerated the 25mg. The thing is, who decides what “tolerating” a drug means? For the past two days I’ve opted to take it in the mornings vs. the evenings thinking taking it with more food, and less of my other medications, would mean less symptoms. I did do a little better, but I also felt like sleeping all day. I could probably go back to bed right now and sleep until tomorrow. Of course this could also be my Behcet’s flare so who knows.

As much as I hate feeling sick, I hate feeling useless the most. I’m someone who enjoys having a job. I enjoy spending time with the people I care about, even though I’m introverted, and when my illness takes that from me I end up feeling completely useless. The worst part is when someone you think is a friend, someone you expect to understand it, not only fails to understand you, but attacks you publicly for it.

My ex and I had a bad marriage, and as a result of some things that were said, and mistreatment, I took the step to get a no contact order. It was better for my health not to deal with the stress of dealing with him. A friend of mine had the nerve to insinuate I was weak for doing this, because my “recovery” would suffer. Apparently the only way to conquer abuse is to allow your abuser to continue to act however he/she wants to act, and “recovery” is having the strength to know that their words are just words, not statements of fact.

Isn’t it possible that both of us are right? That I have the right to legally remove someone from my life, because their statements cause me stress during a medically critical time, while at the same time I’m working on not internalizing their words?

It sucks because this friend would say that she couldn’t handle me venting about how hurt I was over the things my ex would say, because it put her recovery in jeopardy, yet when I took steps to end the contact, suddenly the insinuation was that I was weak. Then I found out she was claiming to have gastroparesis, and I was done. I’m the one who talked to her about what it was, and how to be tested, despite the reality that she didn’t meet a lot of the criteria. Her issue, she said, was binge eating disorder and anorexia. We debated because my diagnosis of Behcet’s also included borderline issues of gastroparesis, likely due to periodic inadequate blood flow.

Then I did something I don’t usually do. I stood up for myself. Hard.

My friend is polyamorous, which is fine, because she insists it works for her. I decided to question whether or not her lifestyle was working for her partners. She would come to me whenever one of her male partners showed interest in another female, something considered acceptable, and then her anorexia or binge eating would flare and she’d end up in the ER. This effectively thwarted any potential meetings between her male partners and their potential additional female partners.

I wasn’t suggesting that she was intentionally sabotaging their attempts to add women to the polyamorous relationship they shared, but instead questioning whether or not there were unresolved issues regarding how she truly felt about it. Her symptoms seemed to flare at very convenient times, which doesn’t necessarily mean what she wad going was intentional, but rather that her eating disorders (anorexia and binge eating) may be triggered by emotional situations she herself hadn’t even really considered.

Except she had considered it. At one point she’d flat out stated that her partners had agreed not to add any additional members to their lives until she was more stable in her recovery. 

I think that’s admirable, that men would have such love for their partner they’d give up their right to seek out additional, and perhaps necessary, secondary relationships, in an effort to support their primary. That being said, there were things that didn’t add up. She stated she was kicked out of an outpatient program for being “too sick,” and that she needed impatient treatment, but that it would have to wait because she had to photograph a wedding. If you are so anorexic you require hospitalization, and you’re openly sharing this information, and you’re so damn insistent about caring for yourself above all things, why would you not check into treatment immediately?

Within three weeks she’d declared herself in recovery, without inpatient care, but her posts suggest that the care she’s receiving, care she laments she had to pay for out of pocket because the insurance companies wouldn’t cover evidence based holistic care, doesn’t really fit the care for a recovering eating disorder patient.

I got called out, online, without being named, for bashing her for not “appearing sick enough,” which was never something I said. She is sick. She does have an eating disorder. The problem is, she cannot and will not admit that the eating disorder is a psychological condition with physical manifestations. She’s on a mission to label herself with things like gastroparesis, so she can blame her vomiting on that versus the reality that binge eating until you vomit is a form of bulimia. Oddly enough, she blocked me on Facebook when I offered to speak with any of her friends, friend who were vilifying me based on the things she’d written, because I wanted them to understand that I am sick, too, and that I would NEVER claim someone didn’t look “sick enough” online, or in real life. My post was polite, and I said that I wouldn’t include her side of the conversation, just mine, out of respect for her privacy, but that I felt I had the right to talk about who I was, and where I was coming from, especially since our discussion had very little to do about health.

She questioned my mental health recovery, in the midst of a physical health crisis, so I questioned hers, and then all hell broke loose.

The irony, for me, is that I got a no contact order, which suggests (according to her) that I am incapable of defending myself or at least weak in my recovery when it comes to self esteem. Meanwhile she not only goes off about how sick she is, earning a massive flood of sympathy, but then proceeds to block me when I ask for the right to explain myself.

How is blocking me from being able to contact you any different than me blocking my ex from being able to contact me? Especially considering you claim the situations are similar, because you’re working on your “recovery.” 

I’m sorry, but seeing someone go to art gallery shows, take trips to Vegas an Tijuana, and live a life they love, until something they don’t want to do pops up, is a little irritating to me. Do you know where I want to be right now? In San Francisco visiting a friend, or at work, or out for a walk, or any one of a thousand things that doesn’t involve sitting on my couch hoping I don’t throw up the lunch and snacks I’ve been able to consume. She claims that she needs days to recover after these events, yet she does nothing to prevent damaging herself during such events. The truth about chronic illness is you miss out on things you want to do because you know your body can’t handle it.

As I sit here, staring down the three weeks until I get my blood tested to see if I should be feeling better, until hopefully the side effects wear off, until I get my MRI and results and my new nerve conduction test, she’s in another state visiting family. I think what bothers me is that there are always people who seem to absorb the illnesses of others, and utilize it for sympathy, and later, to become role models. When she found out about my PTSD, she magically had it, too, even though the symptoms she was telling people about made no sense whatsoever. She was counseling people with general anxiety, and no history of trauma, that even one panic attack meant you could have PTSD, and so people with random depression or anxiety, flocked to her for her PTSD prowess. My dog was a service dog and allowed to live in housing even though dogs weren’t allowed? She had a service dog soon after that.

We had a falling out before, years ago, when she pursued an abortion and bluntly told me, “I wanted a puppy not a baby,” despite knowing I faced infertility issues with my ex. I understand that she was in a bad place with her husband at the time, they were separating, and the whole thing was a mess, but the way she handled it was disgusting. She told people she had a severe illness requiring emergency surgery, and then cancelled photo sessions and apologized that prior sessions would be edited a bit late. I’m not saying she needed to tell her clients she was having an abortion, but even with friends she made it out to be this emergency situation that it wasn’t.

She’s had more abortions since then, and honestly it’s her right, but perhaps the holistic approach to family planning isn’t the best option if you’re constantly having to experience miscarriages or abortions. That’s the thing with her, really, is that the rules apply when convenient, and her friends, like me, often find ourselves fighting for the same rights she affords herself. It’s possible for me to work on not internalizing negative verbiage while at the same time opting to make it illegal for the person causing me so much trauma, to be a part of my life. She decided I was harmful for her recovery, for whatever reason, and blocked me, which should have been an “aha!” moment for her in terms of understanding that you can still be recovering while at the same time choosing to remove people that contribute to the thing which you are recovering from.

Of course I don’t think that was the case. She deleted me because she didn’t want to have to defend the un-defendable. She herself admitted that she handled the situation with one of the potential relationship girls negatively online, but that at the time she felt good about it. That right there I was proud of her for, recognizing she did it, and realizing that to live the life path she’s chosen, means having to have some damn good compromising skills and patience.

I wish I had her as a friend, mostly because her knowledge of medical marijuana and natural ways of treating things was beneficial. I still have to do things like undergo infusions, and take horrible drugs, but having someone around who knows of a non pharmacological treatment for nausea (yay peppermint oil) is helpful. We won’t be friends again, not the way things ended, and it’s probably for the best. When you’ve spent literally years trying to get diagnosed, it’s super frustrating to have someone meander into your life and start hijacking those diagnoses. Even if she does suffer from some medical conditions, the overwhelming issue in her life is that she can’t handle stress, and she loves attention. She gets “sick” then gets “better” and suddenly feels it’s her right to counsel others about their medical and emotional conditions. It’s actually terrifying. She once told me the best option for my severe kidney infection was garlic, which I’ll admit garlic has germ killing properties, kidney infections still require intervention with antibiotics.

I’m just so angry. I’m angry that in the midst of all this stress and drama and physical sickness, someone I considered  a friend, bashed me when I had a high point. I was thrilled about the no contact order, I had scored a couple dresses on sale, and was ready to go to LA for two days with the guy, and wham, she decided that judgment was the way to go in that situation. It’s absurd!

My trip to LA? Fun, but exhausting. I’m still recovering over a week later, because I refuse to accept my limitations. The live taping was amazing, but afterwards we got lost because neither of us had phones (rules of the show, though we found out after we could have left them with the check in people but whatever.) We walked for at least an hour, which would have been okay, but I wasn’t feeling amazing about 20 minutes into it. I’m out of shape from all the bed rest, but I’m also sort of in this uncontrolled on and off flare that sneaks up on me. The next day I woke up and I seriously wanted to die. We hung out by the pool, and talked about plans for that night, but I was sort of please when we went to dinner and he wanted to just go back and hang low. He felt bad, but I was in so much pain by that point, faking being “okay” was becoming impossible.

He saw me at a really vulnerable moment twice during the trip. That night I was curled up in the shower, desperately trying to will away the severe abdominal pains that plagued me. He came in and his eyes locked on mine, and I could see the concern, but then again, this wasn’t something I hadn’t gone through a million times before. I’d ruptured an ovarian cyst, but that wasn’t the cause of all the pain…still I let him sit on that as the excuse. Then my PTSD acted up on the way home while he was angry in traffic, and I was angry with my stomach for being uncooperative. For the first time in months I’d had to tell him to hold off on sex because of my pain level, and while we’d managed to have sex later, it still scared me.

Now he’s out of town, the pain is back, and I’m sitting here wondering how someone who can claim to be as sic as my “friend” is, juggles it all. She touts a support network that seems to be fantastic, but the premise it was built on is falling apart. How can she maintain a sexual relationship with both men, and not feel like she’s dying? (Answer is that she apparently has stopped having sex with the one, for the most part.)

Her attack on me wasn’t just about my ex, but about my insecurities with “the guy,” which honestly just makes me sick. Every person alive has insecurities while they’re seeings someone, regardless of boundaries, labels, etc. I may have additional insecurities because of my current and past situations, but that doesn’t mean I have to launch into some metaphysical analysis of my partnership with him. Nor does it mean I have to lock myself away and work solely on myself because I have the issues I have. I worked on myself, for years, if I hadn’t I’d never have left the abusive situation I was in behind.

All in all, I am sick. I feel sick. I hate admitting it and I hate asking for help, but it’s the reality of my existence. When my roommate judges me for being on the couch day after day when he gets home, I get angry. I pay my portion of the bills, who cares? I make efforts when I can, but it’s a struggle. I sacrifice something of myself to please him, despite the reality that he’s probably still not happy. (Example: I put away the dishes, most of which he made, and then loaded up the dishwasher with his disgusting smelling dishes from the night before. I sit around a lot because I’m basically on a mission to destroy my immune system, with the newest drug metabolizing into what is basically chemotherapy. Sorry if this makes me a little tired, nauseas and cranky!) I cleaned because the smell was making me gag.

He wants me to go out more, to be something I’m not, but then again, I want to go out more, too. The problem isn’t wanting, it’s being able, and my body simply can’t tolerate things like other bodies can. Maybe someday…but not today.

It makes me feel so damn useless : (

 

Feeling Useless, and Calling Out Fakers