Medical Marijuana Discussions

I live in California, where marijuana is now recreationally legal. Anyone over 21, can go to a dispensary, and buy marijuana. There are regulations on where you can use it if you’re smoking or vaping, but other than that, it’s all fair game. As a teenager and adult, I never had the urge to try marijuana. Yes, I’d heard about it, but with all the medication I was already being put on and taken off of, it just seemed like a risk. Not to mention all the drug testing for school, work, and medical tests. Then the gastroparesis situation got dangerously bad, along with the Behcet’s, and you all know that story.

With the legalization of marijuana I don’t need to renew my medical card at the end of the month, but I likely will if I can find the funds, because it’ll entitle me to certain discounts, and provisions for having more in my possession than a recreational user. Not that I’ll ever have that much in my possession, I’m way too broke to store that much weed, but it’s nice to know that, were I to move somewhere that allowed me to grow some, I could.

Recently I’ve graduated to vaping a few times a day. It isn’t something I particularly enjoy, because for me I’d rather take less medication, including marijuana. I view it as both a recreational option, as well as something that has medicinal benefits. It’s all about how you use it. I would thoroughly enjoy the opportunity to join the recreational trend, and just use it periodically to relax, alone or with friends. Right now, I could theoretically smoke more with friends, or different strains with friends, and feel different than I do when I use it medicinally…but it sort of throws me off mentally.

How can something I rely on to avoid hospitalizations and severe dehydration, also be something I use for fun

My brain keeps comparing it to opioids because of what a professor said about the legalization of marijuana being a gateway to the legalization of heroin. Obviously he was off base, just based on the reality that heroin doesn’t have a direct medicinal use in it’s abused form…but it is an opiate. Opiates can be prescribed to treat pain. In fact, a lot of heroin users started by abusing pain killers. They switched to heroin because it’s cheaper. So what is it? What defines something as a recreational drug, versus something that is used medicinally?

In the end I think it comes down to how it’s used, and how it’s acquired. Yes, marijuana is legal in my state. If you smoke it until you can’t function, pay your bills, or exist, then you’re an addict akin to an alcoholic. If you use it periodically in a responsible manner, then you’re a recreational user. If you use it as recommended by a physician, then you’re a medicinal user. It seems simple, but people judge you anyhow.

Now that it is legal in California, people view my regular use of Marijuana, as though I’m some stoner who can’t get by without being high. Truth is that I’m rarely high unless I overshoot my intake, or change to a new strain that impacts me in an unexpected manner. 

I need marijuana, but only because Zofran can only do so much. (Not to mention waiting for it to kick in when you have gastroparesis can be excruciating. There’s nothing like taking an antiemetic and knowing you’ll probably throw it up…) If I can get a port, and start getting more IV fluids, then perhaps the nausea will be more manageable. As it is, I’m sort of low on options for treating the nausea. I can’t take any more Zofran than I am, and they would prefer I take less, because apparently there is a link between Zofran and an increased seizure risk. Phenergan increases your risk of developing a movement disorder, which is a problem since I’ve been on it so long. That caused a decrease in my dose, and I’m only supposed to use that as absolutely necessary. I’m allergic to Compazine. I thought I wasn’t because I didn’t have flat out dystonia like I did years ago, but after a few doses it felt like my muscles were on fire, and I was super twitchy.

Today I’ve had a bowl of gluten free macaroni and cheese, and two small rice crispy treats. I feel like I’ve eaten an entire family’s Thanksgiving meal.

This is life with gastroparesis. What I did eat, was courtesy of weed. I’m beyond grateful that I was able to even get that down. I haven’t had water today, just a little gatorade, and yes, I’m bad, I had soda. I’m working on giving it up, but I am addicted to caffeine. I’m also a graduate student with 2 weeks left of class before she starts her thesis, so I mean, it is what it is at this point. (Let’s toss in a personal life in turmoil, and finances in ruins, and I think we can excuse the fact that I consume 1-2 cans of cola a day.) Thankfully, for whatever reason, fizzy beverages are easier on my system than flat ones.

So yes, friends, family, and potential future people that I meet…I use marijuana and it has undoubtedly saved me from hospitalizations, passing out, and at one point, a feeding tube. 

On one side of the page is the list of symptoms relating to chronic illnesses you have, on the other side are the tools you have to deal with those symptoms. Ginger helps with nausea, it’s also totally legal for anyone to buy and consume because they just like ginger. It is possible for something to be enjoyable and fun for one person, while another person uses it for help in dealing with their health.

Medical Marijuana Discussions

Family Planning (NSFW-ish)

Okay folks, there will be some basic biology talk in this post so if you don’t want to read about any of that, I’ll see you next blog 🙂


Ah yes, birth control. That thing you wanted until you turned 30, then immediately wanted to burn so you could start a family with the guy of your dreams…just kidding, this isn’t a sitcom. I was put on the pill at 16 because I had periods that were brutal. It turned out that I had really bad ovarian cysts. I was on the pill from 2002 until 2014. I wasn’t on anything for a little over a year. Then, after a year and a half (or so), I got an IUD. There is my birth control journey in a nutshell. There were different types of pills involved, but because of my cyst issues (and what turned out to be endometriosis) I needed high dose oral contraceptives. I went off for a little over a year because I wanted to see if cysts were still an issue, and while they were, the endometriosis was really more of an issue than the cysts were. At the time it wasn’t diagnosed, though. Once I kicked the pill, my doctor felt comfortable with the diagnosis. So how does this all fit into Behcet’s?

For starters, there is an awkward give and take with the whole birth control issue. Most of my medications are contraindicated in pregnancy. Some are actually so bad for pregnancy, I had to prove I was taking reliable measures to avoid becoming pregnant. Of course my family history of blood clots, and having vasculitis, meant I was pushing the limits of estrogen containing birth control pills. My doctor had told me that being on birth control pills that contained estrogen, was a surefire way to get a blood clot.

I really didn’t want a blood clot.

I was able to forgo birth control entirely because I had failed to get control over periods using non-estrogen containing oral contraceptives. They had wanted to use an IUD, but I was super afraid at the time. I also knew that I wanted children in the next five years. At the time I was with someone who had lab work that showed issues, issues that would make conception without intervention highly unlikely. The chances were low enough that, when presented with the numbers, my gynecologist was comfortable enough with me going sans birth control, despite being on medication that usually required me to be on birth control.

Score one for male factor infertility.

I don’t do drama, so for the record, my ex did go on to have an adorable baby boy with his gorgeous girlfriend. While we were together I was informed given the information at my disposal, that we could not have children. Indeed, I was able to stay off of birth control for well over a year, without a pregnancy. 

Now, for so many years the goal of life was to avoid pregnancy. Let’s me honest, for most of us that’s how it goes. We try to avoid pregnancies, until all of a sudden we realize we want kids. Some people are lucky enough to avoid pregnancy, then become pregnant, when they find it convenient. Other people find themselves getting pregnant when they didn’t plan on it, or struggling to get pregnant at all. Then there are the weird sick women out there, who have the added benefit of having to seriously plan out pregnancies because of illnesses and medications.

Doctors have had various recommendations for me. Some have looked at the research and been comfortable with my proclamation that I want children some day. For many women with Behcet’s, pregnancy brings a relief from symptoms. Doctors don’t really know why, but Behcet’s symptoms, and even the disease itself, tend to lessen during pregnancy, and even shortly afterwards. Of course some women have worsening symptoms during pregnancy, and more have issues following the birth of their children, but there was hope.

Other doctors have acted like I’m insane. The medications alone make it a really risky idea. I would have to stop certain medications for a certain period of time, but also be able to start pregnancy safe medications within that time, to keep all my symptoms in check. A seizure during pregnancy would be really bad. Gastroparesis makes me nauseas and struggling to feed myself adequately, how in the world will I be able to nourish a growing baby? They point at the unknowns genetically in terms of how many people in my family have autoimmune ailments. Of course there is no guarantee that I’ll be passing anything along.

The rest fall somewhere in the middle, which I feel is the right place to be. I definitely don’t expect to have an easy go of it, but I would like to have at least one or two children of my own. I would love an adopted child, or a stepchild, just as much, but there is something about a biological child that does call to me. I’ve definitely considered IVF with a surrogate, but that is an expensive route. It’s also the safest in terms of what would be best for the baby. (Think about it, my body does a poor job of keeping me alive, entrusting it with a fetus seems terrifying to me.) A surrogacy would also mean I could stay on a lot of my medications, or at least go back on medications sooner. (Some medications you cannot be taking because they pass along birth defects via the egg, so I would have to stop those prior to egg harvesting.)

Is this a fun read or what…

I know my best chance at having a healthy biological child, is via a surrogate, but it doesn’t make thinking about it any less daunting. I mean, I was married, I’m in the process of getting a divorce, I’ll be 32 in April…and there is a timeline on fertility. I didn’t do myself any favors with the chemo. (I still don’t know if there was damage to my eggs, but again, that’s not something I can really know without specific fertility testing. My insurance only covers fertility tests if you’ve been trying to conceive for a period of time without success.

I’m pretty sure I don’t meet the qualifications of trying for any period of time, given the fact that I’m painfully single.

Another issue for me is that I did have early stage cervical cancer. They removed a pretty decent size of my cervix, and the location has made it more likely for me to experience issues with premature labor. So, you know, as if it weren’t enough to have Behcet’s with heavy GI involvement including gastroparesis…I had to go and get cervical cancer, too. Don’t get me wrong, I am beyond grateful that it was caught early, and that I only needed local surgery instead of a more invasive surgery and chemotherapy. It just would have been nice if I could have avoided cancer all together.

Doing six months of chemotherapy, then getting diagnosed with cancer? Yeah, that’s only something that happens in my life.

This is another rambling blog, but today was infusion day, and I’m in that weird headspace of sleepy, but full of vitamins. I hope I find someone someday who can love me, illnesses and all. I also hope that they want children (or already have children) and are supportive of whatever pathway to parenthood we choose together. It may not be conventional, but that’s okay. Right now I do have an IUD. It was placed before I was diagnosed with cancer, and I’m thrilled with it. It controls my endometriosis issues, and I don’t know it’s even there. There isn’t a worry for me regarding pregnancy, which is important still with all the medications I’m taking. With my nausea issues, vomiting, and malabsorption, it was time to get something that didn’t rely on another pill I would have to remember to take. Plus, no estrogen!

Family Planning (NSFW-ish)

Dieting With Gastroparesis?

Okay, so that phrase seems counterintuitive, right? It is…but it isn’t. During chemotherapy I gained a substantial amount of weight. I needed to gain weight, but not as much as I did. I went from 120 pounds to 195 pounds. Ideally I’d love to hang out around 145. Currently I way 170. That 35 pound drop? Yeah, I got myself down to 190, but the other 30 is from gastroparesis.

So how the hell do I diet. I mean, I want to lose weight, but not because I’m not eating.

There isn’t really an easy answer. I eat what I can, when I can, and I try and make sure that the food I’m eating is easy to digest, but nutrient dense. It isn’t easy. Protein bars, protein cookies, etc., are all options, but sometimes the protein is really hard for me to process. Lately I’ve been doing toast with some butter and honey.

Today I’ve had two pieces of toast with honey, and two little pieces of soft fresh mozzarella cheese. 

That isn’t enough. I also wasn’t supposed to be eating the cheese, but I had a moment of hunger, and just went with it. The problem is that I’m so full, and haven’t had much to drink at all. That’s the other issue with gastroparesis (for me) is that I often find myself choosing between food and water. I know I need water, but I also need to keep my blood sugar up. Again, I go to honey. I have hot lemon water with honey. I think I’m just hoping the honey will keep my blood sugar up, while also tasting good and giving me some calories.

Yes, I want calories. 

This is where people can go down very different roads. Some people, like myself, want control over intake and output. I want my exercise and calories, to be well matched. I don’t want to lose weight too fast. I know that I need to keep muscle on, and burn fat. If I’m losing too much weight, I’m losing muscle, and telling my body to store fat. Others go down a very different path. They see the massive weight loss gastroparesis is providing, and they lean into it. It becomes an excuse for intentional disordered eating.

If you have a digestive order, and you’re using the symptoms or medications to help lose weight intentionally, please talk with your doctor. 

Some conditions and some medications cause weight loss, but you should be working with your doctor and your nutritionist to mitigate the impact of this. Being sick is not a good way to lose weight. I was 120 pounds because of gastroparesis. I gained weight during chemotherapy because of the drugs I was getting, including steroids. I also developed a ravenous appetite for sweets. I would eat a little bit, all day, and I could process the gluten free vegan options…so that’s what I ate.

Look, I’m not going to rationalize my weight loss or gain. The reality is I should have been receiving better care before I got to 120 pounds, but I honestly didn’t even realize I was that thin. I was so focused on the symptoms, and because I didn’t feel hungry, it didn’t dawn on me that it was an issue. Friends would make comments, and eventually I realized that I was wearing dress sizes and pant sizes that I had never worn. Sitting in a dressing room, holding a small and extra small, when you’re as tall as I am, can be a sobering moment. I remember thinking that I’d wanted to lose weight, but being utterly confused how I’d gotten so thin.

I don’t get hungry, so I try to be mindful of my nutritional and caloric needs. I am 100% sure that I’m deficient, but I’m not negligent.

I get infusions of vitamins and amino acids, because I cannot take in these specific vitamins and amino acids, by mouth. I’m also dealing with periodic malabsorption. I have ulcers in my intestines that prevent adequate absorption, and I also have sections of intestines that just don’t move properly, again, contributing to malabsorption.

It’s funny because I have moments where I’m just matter-of-fact about my gastroparesis. “No thank you, I can’t eat. I have gastroparesis, so I’m still full from breakfast,” she says at 8pm. Then there are other moments, where I get defensive. I’ve been told that not eating sufficiently, for x amount of days, makes me anorexic. There was a heated exchange because anorexia has a physical impact on your body, but ultimately it’s a disease of the mind. Gastroparesis can lead to anorexia, or contribute to anorexia, and severe enough anorexia can even lead to gastroparesis (or at least issues similar.) Someone who has gastroparesis, and loses weight because of it, is not automatically anorexic.

I want to lose weight. I do not want to use my illness to lose weight. I acknowledge that my weight loss is unhealthy, and I do everything in my power to slow down the weight loss, as well as to supplement nutritionally and calorically. 

We can go back and forth for the rest of our lives, but ultimately the important thing is achieving health. I want to be able to work out. I want to be able to eat salads again. I want so many things. The last thing I want, is my gastroparesis to decide my body shape, and for me to have to go along with whatever the disease decides.

Dieting With Gastroparesis?

Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never knew existed, and it’s in demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

Changing Your Expectations and Being Okay with It

Happy Holidays, and Gross Poo Talk

So this year I wasn’t able to fly back to see family, which was definitely a bummer because I haven’t been able to the last two years either. With the illnesses going around, and my general poor health, flying just isn’t an option right now. While my seizure drugs are currently doing a good job, flying is a high stress situation for me. That means I don’t sleep well prior to flying, and I also tend to get nauseas so I don’t eat much either. Anyhow, an amazing friend and his family offered to have me up with them on Christmas day. I ended up staying a couple nights before heading back down to San Diego. It was really amazing, minus my body being a pain in the rear.

Currently the GI issues are the biggest thing. I’ve reached a state of low nutrient intake, and low calorie intake. This has amplified the brain fog I was already dealing with courtesy of the neurological issues. My friend and his family were amazing. They had foods on hand that I could eat, including specially mate potato pancakes without onion so I wouldn’t hurt my stomach eating them. I felt kind of bad because I only ate two of them. I also only had 4 pieces of the bread they’d bought for me, too.

The issue is that I have a partial bowel obstruction. I’ve had them before, and sometimes I can clear them on my own, and other times I have to go into the ER for some really horrible assistance. I have no desire to have the doctors give me high strength laxatives, and enemas. I still have 2 months before GI will see me, and I have to have a bunch of testing between now and then that they want me to complete.

It’s like the doctors don’t realize that there is nothing that needs to be tested for. We know I have gastroparesis based on a test done several years a go. Yes the testing was done poorly, and I was barely over the line, but what does redoing the test prove? Also, the only reason they want the abdominal MRI is because I have stenosis of the celiac artery. I get that it’s super rare to have it the way that I have it, but we also know that this kind of thing can happen with Behcet’s patients. While I go through all of the scheduling and testing, we’re wasting time. I’m struggling, losing weight, and losing focus.

I went from super focused in classes, with high marks, to a struggling student who can’t stay focused, and who is barely getting by.

This will be a short post just because I can’t focus, and may need a nap, haha. I’m still putting my hopes into IVIG. I want it to work, and I want to function again.

Happy Holidays, and Gross Poo Talk

First Round of IV Vitamins, and the Unemployment/Disability Situation

Yesterday, on the 23rd, I got my first infusion of fluids vitamins, and amino acids. It wasn’t pleasant, but mostly because I was still so sick going into the appointment. Basically I’m still having bleeding issues, most likely from my colon, and lower intestines. I’m also having a lot of nausea courtesy of the gastroparesis. I find myself in this horrible situation where, if my stomach and upper intestines empty, they hit the lower intestines where the ulcerations are. So the nausea fades momentarily, only to return as the pain of the food and drink moving through me hits the ulcers. The doctors are fairly sure some of the ulcers were deep, and created blood clot like scabs that are coming off when I feel like I have to go to the bathroom. It’s super fun…

Anyhow, I pulled myself up off the bathroom floor (literally) and went in for the infusion. I was pleasantly surprised when the nurse hit a vein on the first try. (I had forced myself to drink and keep down liquids, though it had left me violently nauseated.) She warned me that the infusion would taste funny, like a Flintstone vitamin. Turns out it tasted exactly like one, but not the fun fruity part…the gross after taste part. This would have been manageable had I brought mints or something, but I hadn’t. It also would have been manageable if I weren’t already trying to avoid throwing up. Then there was the woman who seemed determined to talk to me.

I am pale, obviously in pain, and she just kept talking…

I’m not sure what we talked about. I grunted responses periodically, but spent most of the time checking out her adorable dog. Then something fun happened. About halfway through the bag I thought I was dying. I felt hot flashes, the nausea peaked, and I was pretty convinced I was going to faint or have a seizure. Then, a little while later, it all went away. I told myself it was just the Zofran I had taken prior to the infusion…but I kept feeling less horrendous. Now, don’t get me wrong, the damn thing still tasted awful, but I didn’t feel as awful. 3/4 of the way through the infusion, I was actually sitting up in the chair instead of half curled over. As it finished I had to admit, I felt a lot better, just from the fluids. The vitamins were much needed, but I am sure they haven’t done much just yet. The nurses and nutritionist had all said it would take several regular infusions before I felt a lasting benefit from the vitamins and amino acids. As I’m getting up to leave, talkative lady addresses me and the nurse.

“You look less dead.” Then to the nurse, “Doesn’t she look a lot less dead?”

I mean I’d rather look totally alive, but I’ll take less dead I suppose. My stomach still hasn’t been doing well, but that’s just the nature of the situation. My upper GI doesn’t want to move at all, while the lower GI is a mess of ulcerations and blood. Happy holidays I suppose.

Hopefully I can get an update on my wheelchair after the holiday. I’m bummed that I’ll have to start paying copayments and whatnot, given my insurance year will begin again, but I’m hoping I won’t have to pay it all at once with the wheelchair. That would definitely require me to sell everything I own. I’m also excited to start IVIG. I’m crossing my fingers for some good news regarding my disability as well.

For a long time I was opposed to the idea of disability. I want to work. Not working leaves me unfulfilled. It isn’t even about finances, though I’m definitely struggling financially. Working has always given me a sense of pride and purpose. Even the smallest job made me feel like I was contributing in some way. Without working I feel sort of useless. I know I couldn’t work the way things are right now. As much as I may want to work, I just don’t know day to day how I’ll feel. Plus there are the medical treatments. We’re talking about IV infusions 2x per week, if insurance will cover it, then IVIG which will be given over a period of two days. From what I’ve read IVIG is done every 4-6 weeks. If it lines up with IV nutrition appointments, I could be spending 4 out of 5 days in medical offices one week per month. I’d still be spending two days per week in medical offices anyhow. Once we’re able, we’ll wean me to an IV per week, but ultimately we can’t go lower than that since I really need the fluids.

This is the thing people don’t seem to grasp about disability, and those of us who are chronically ill. We fight hard to get to a baseline that is somewhat close to that of a healthy person. Most of us won’t ever feel as healthy as a healthy person, but we can fight hard to become functional enough to basically pass as healthy. Getting to that point takes a lot of effort and time though. In my instance we’re talking several IV treatments, a ton of oral medications, and carefully orchestrated drinks and snacks. Even with all of that, I could wake up and feel miserable. If you look at my IV schedule alone, it become a scheduling nightmare. Toss in the fact my body doesn’t operate well in the mornings, and that I could randomly have a few bad days without warning, and you get someone who really doesn’t have the ability to work right now.

I am not defined by my illness, however, I am limited by it. For a long time I lied to myself, and swore that Behcet’s and the things it has caused like gastroparesis and autonomic neuropathy, would never limit me. I was determined to live the life I wanted, despite the symptoms. As I pushed myself, I got sicker and sicker. Then denial kicked in. I told myself that I was in a flare, and that once the flare was over, I could get back to living a normal life. Denial isn’t helpful. I hit a point where I had to acknowledge that some of the things I wanted to do, I couldn’t do, because of my chronic illnesses, and that’s okay.

Yes, you read that right folks, it’s okay to accept that your disease limits you…as long as you don’t let it define the entirety of your being.

I am chronically ill. I may have to use my wheelchair at times. I cannot work. My diet is an absolute wreck, and even when I do follow the doctor’s advice, I can’t always succeed. The ER team knows me. Professors have to allow me extra time should I require it. These are all facts of life for me. I accept it, and I pivot because of it.

Find something else that you love, and know that limitations are not forever, but even the ones that do stick around don’t change who you are as a person. 

Life is what it is, and sometimes we can’t wrap our heads around having to change our plans, but we also can find ourselves trying something new that we hadn’t even thought of before. We find new passions, new paths, and we go with it.

So go with it. 

First Round of IV Vitamins, and the Unemployment/Disability Situation

It Will Be Fine – Hugs Toilet

After a few weeks of waiting impatient, my GI appointment finally came. Unfortunately the doctor told me that there wasn’t anything he could do. Apparently there are GI motility specialists, and this doctor suggested that I see a specific GI motility doctor. Of course, that meant my appointment today didn’t offer much. On top of that, the motility doctor won’t see me until I have a referral from a regular gastroenterologist. The good news was that I have seen the GI in that practice  before…the bad news is that I never had the follow up testing because I started chemotherapy.

The GI doctor can’t see me until the end of February…and then I’d need to have two tests done before they would even refer me to the motility specialist. 

Understandably I was discouraged. The receptionist was super sweet, and they’ve phoned in a symptoms consult with a nurse so that they can at least attempt to help me manage the nausea, heartburn, and dehydration. I’ve explained that I don’t vomit because I fight it and refuse to eat or drink. They have me on a cancellation list so I can hopefully see the doctor sooner.

The GI doctor I saw made it clear that, despite what the wait may end up being to see the motility doctor, not to get my hopes up. The treatment options for gastroparesis are slim, and of the drug options, I’m not a candidate for two of the three. The antibiotic option isn’t a good plan due to allergies. The second drug causes neurological issues, and I already have neurological issues, so it’s not an option for me. The third drug works great…but isn’t FDA approved for use in the U.S. yet.

There was mention of the ability to buy it online from Mexico and Canada…

I had asked about IV fluid therapy, but he wasn’t comfortable starting me on that since they wouldn’t be treating me for gastroparesis. I asked if they could treat me for the dehydration caused by my nausea and appetite…and he said they could have if it weren’t for the fact that the cause was gastroparesis.

Yes, without a diagnosis, I’d be given fluids and medications. Since we know what is wrong, I can’t get treatment…unless it’s from a doctor who is a specialist in that diagnosis.

For years I didn’t have a diagnosis for my Behcet’s. I was treated solely based on my symptoms. Now I’m in a situation where the cause is known…but I can’t get treatment. I was given a medication for severe constipation because, to be blunt, I haven’t had a normal bowel movement in months. I take enough over the counter laxatives to treat a herd of elephants, and yet I’m still…well…stuck. There is no guarantee that the medication they gave me will work, either, but they seem to think it’s worth a shot.

Rheumatology still hasn’t said anything about moving up my IVIG trial start date…which would be fine, but they won’t send me for IV fluids either. My sole option is to do it on my own, which my rheumatologist is okay with (and endorses emphatically)…but yeah, I need to find my friend’s doctor who does it. At least insurance will cover it, but it’s starting to feel shady.

I guess the lesson is, as long as your doctor knows that you’re doing certain things to manage your disorders, it’s worth trying ones that aren’t exactly conventional.

Today was definitely not a win, but it wasn’t really a loss either. I’m still lonely, and nauseas, but hopefully I can at least begin to move towards things to help me feel physically better. The emotional work is a bit harder, but still so worth it.

It Will Be Fine – Hugs Toilet