Juggling Doctors and Care Plans

After the ER nonsense last week, I made an effort to make a few calls today and see if everything was on track. I was dismayed to learn that the nurse practitioner filling in for my doctor, no longer seemed interested in handling my case. My regular rheumatologist is on maternity leave, and prior to her taking time off, we coordinated with her temporary replacement in terms of managing my care. The plan was to put in the request for IVIG, which was done, then begin IVIG as soon as possible. My insurance company was up for a contract renewal, and a new company won the contract. During this process a few of my referrals were shuffled, meaning I needed a new referral for IVIG.

This is when things got weird.

I was in and out of the ER last week, obviously, and the reason is pretty clear…I’m stuck in an awful flare. All I can do is sleep, and take medication for the nausea and pain. I either have a clot or gnarly phlebitis in my left wrist, but I refuse to deal with it until I go for my vitamin infusion tomorrow. Anyhow, I was speaking with the nurse practitioner, and she didn’t seem to understand what I was telling her. Nobody called me back from the office last week, even though messages were left stating that I’d been seen in the ER. I let her know that I’d taken it upon myself to start a medrol dose pack, which she was fine with, but she didn’t seem to understand anything else I was saying. Then she did the worst thing ever…

She told me she talked with my doctor, who is on maternity leave, and then suggest I go be seen at the teaching hospital because I could have access to more treatment options (theoretically.) 

For those of you who don’t deal with a billion doctors…this is basically trying to dump me into another medical system because they’ve reached the end of what they can do for me…but we haven’t started IVIG yet. The nurse practitioner started going off on a tangent regarding how we couldn’t do more Cytoxan as I’d already done it for six months. I cut her off and made it abundantly clear that I was not looking to do anymore chemotherapy. It didn’t work, so why on earth would I want to do more of that nonsense?! She rechecked the notes and finally saw that IVIG was what I was trying to explain to her, which there is a huge difference between IVIG and Cytoxan. They are worlds apart.

This conversation was one of the most frustrating conversations I’ve had with a medical professional in a while. 

The subject of a port was brought up, by me, because they need decent access to do IVIG. I was already approved by the old insurance management company, and it’s reasonable to expect the same approval from the new management company. It’s literally the only other treatment we have available at this point in time. Again the nurse practitioner and I butted heads. She kept talking about how I would need better veinous access to do IVIG…I kept telling her this was why my primary care doctor, and I, had discussed the options thoroughly, and decided that a port would be the best option.

She then starts talking about how I will need a PICC, or more likely in my case, a central line. Why the hell would you give a patient who will need IV treatment on and off for the rest of their lives, a central line, when you know damn well you’re going to have to maintain the central line for years? 

This led to more confusion between her and I, and at the end she said we’ll just handle it when the referral for IVIG comes through. Okay, in theory, but can we talk about how that’ll just add to the wait time to start IVIG? At this point I’m going to have to advocate hard for the port and IVIG to start at one time. Since I have to have  IVIG two days in a row, and I have a history of allergic reactions, the IVIG will end up running super slow the first time. Why not just do the port surgery as an inpatient procedure, start the IVIG at the same time, and save everyone a lot of time and energy?

All of this is taking place while I’m trying to juggle difficulties in my life, including finances, and depression. Lately the depression has been justifiable given the circumstances I’m going through, but it doesn’t make it any easier to handle. I just want a normal life, and as excited as I am to have tools like a wheelchair at my disposal, I worry how the world will look at me. Will I be able to use my port for IV fluids at home? What about medications? Will I finally have the ability to care for myself or will I just become “that sick girl” to people around me?

While I know my chronic illnesses don’t define me, they do rearrange my life, and I think it’s okay to acknowledge that. I don’t have to be Behcet’s disease, but I do choose to be the face of Behcet’s disease. People hear you say it’s autoimmune vasculitis, and they don’t think much. The reality for patients with more complicated cases, is that it’s utterly life changing. We don’t know why it hits my nervous system the way that it does, or why it’s so damn resistant to medications, but it doesn’t mean we can’t find something that works.

Hopefully I find out this annoying painful lump in my left wrist/hand is phlebitis and not an actual clot. The last thing I need on my plate right now is some surprise blood clot in my wrist/hand. They did push IV medications that usually drip due to their impact on veins, so I’m thinking that the issue is just irritation from that drug. You’ve got to love that the U.S. is running out of IV bags because of the flu being so bad.

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Juggling Doctors and Care Plans

ER Drama

My flare reached new levels, and once I realized I couldn’t eat or drink enough to prevent passing out, I went to the ER. Actually, I went to the ER because of that, and some persistent lower left quadrant pain and bleeding. (I also spiked a fever which was present at my doctor’s office, but ran away in time for ER arrival. Thanks.)

The first ER I went to on Tuesday. They treated me like absolute garbage. I was accused of being a drug addict even though I explained my bad veins were the result of my Behcet’s and repeated sticks and infusions. Despite them having my chart, including an admission to their affiliated hospital a little over a year ago, I was repeatedly asked what drugs I inject.

Thank for making me feel worse about myself, and for avoiding the actual reason I’m in your damn ER.

So I wait, and wait, and they put in an IV but don’t flush it…like ever…which for me means it’s borderline useless. I’m in the waiting room, with at least 40 people, and the room is made for at least half that number. People are crying, coughing, the whole plethora of possibilities. For better or worse, I’m in and out of it because I’m just so dizzy. I want IV fluids more than I’ve ever wanted them before in my life. Then, I realize I’m going to faint. I’d been waiting for over two hours at this point, I’ve asked for zofran, but wasn’t given any. I had a partial seizure, and then another, and I realize I need to tell someone, but the triage nurse keeps disappearing into the back leaving all of us sick folks to fend for ourselves (unless you’re mobile which I wasn’t).

I manage to show him the word “epilepsy” on my emergency application on my phone. (During partial seizures I often know what I want to say, but I lose the ability to say it.) He understands me, but then does nothing.

Yes folks, I tell this man via pointing that I’m going to seize, and he just sort of acknowledges me, then walks away. Thanks.

The partial intensifies and now the whole room looks funky, and I’m overcome with this sense of fear I’ve never experienced. Usually I kind of just let go and let my brain and body do what they have to do, there isn’t a point in fighting the inevitable, but this time I really fought it. Perhaps not the best idea. I wake up in the back, and I can’t get nurses and doctors back on track. I get it, I had a seizure, but I don’t remember any of it. I offer to go wait in the waiting room again. I literally was like, “Hey, I know you’re busy, I’m still woozy, but I’m not here for this, so can we just get me back to waiting for my turn?”

I ended up leaving after six hours, with no fluids, no medications other than seizure drugs, and no answers.

Wednesday rolls around and I’m sent to another ER. This time they were much nicer, but things still got shady. My lab work was normal, but per my PCM’s instructions, I got steroids. Beyond grateful! There were some hiccups, namely they were out of small IV bags so they had to push reglan slow through my IV. Between the steroids and the reglan, I got massive jitters. I was told I was being admitted and that I’d be meeting with the rheumatology team at that hospital the following day. Then things got sketchy.

I was going to be sharing a room. Not the end of the world, but not ideal when you’re immune compromised. We get to the room, and I realize sleeping with the TV on means annoying my bunkmate. I told myself I’d use my phone. As I’m trying to process all of this, I realize that the nurses are confused. The other patient is on precautions! She’s coughing in her sleep, on the other side of a flimsy curtain, and the nurses scan’t sort out why someone on reverse precautions (me) would be in a room with a patient on flu precautions (her).

I am not spending the night in the hospital with normal labs, if it means sharing a room with a flu patient!

This kicks off a debate between me and the nurses. Why am I even taking up bed space? They can’t control my nausea adequately in the hospital because there is a limit on nausea drugs in terms of dosages. I metabolize them fast, and end up constantly nauseas an annoyed by it. I’m going to be sharing a room, while vomiting, with someone who has the flu? No thanks.

To be honest a large part of it was just steroid induced panic. Had they shown up and medicated me, I’d have been okay(ish), but it just didn’t make any sense to me. Why spend the night, try and talk to a whole new rheumatology team in the morning, and expose myself to the flu amongst other nosocomial infections?

I haven’t talked to my doctor since leaving AMA. Yes, folks, I left against medical advice..only not really. The only reason I was admitted was because my PCM was worried, but the labs confirmed I didn’t have sepsis (his worry) and the doctor who was in charge of actually admitting me agreed I was fine to go home. His superior didn’t want to take the risk, hence I had to sign out AMA.

Why would they put a reverse precautions patient in with a patient who was contagious enough that nursing staff had to wear masks around her? I know the hospitals are overrun with flu cases, but that doesn’t mean that chronically ill folks should have to forgo proper care. I do wish I could have seen a rheumatology team and perhaps pushed for quicker treatment via steroids and IVIG, but they wouldn’t have been able to approve the IVIG quickly. Also, three days of high dose steroids, in hospital, while sharing a room with someone highly contagious? That is such a bad idea.

The lesson is go to your usual hospital for these things. My doctor had hoped one of the two big centers could have placed my port, but that wasn’t going to happen either, not unless it was a prolonged admission with the start of IVIG included.

That’s been the last few days! I have phlebitis in my left arm from all the sticking, and I’m still sore overall. I have been able to eat fries and tots for some reason, but only in small amounts. Carbonated water and Sonic slushes have definitely been saving me, too. I said a lot of stuff this past week that I regret, most of it due to lack of usual medication, and the addition of emergency ones. I also couldn’t think clearly because of the lack of nutrition. Now I’m stuck in this place where I regret so much of what I said, but I can’t easily take any of it back.

I wish people understood that not everyone with chronic illnesses handles emergent situations the same way, and even people who seem strong on the outside, can fall apart in strenuous circumstances.

I suppose time will tell if friends forgive me and support me still. All in all it was a really rough week, and I’m glad that it’s over. I’m hoping I’ll get some good news next week, and that I find the forgiveness of my friends, too.

ER Drama

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

Because it’s ImPORTant

I have an appointment on Monday to talk to my primary care doctor about a port. My rheumatologist was on the fence, she doesn’t like to request them for temporary care. The problem is that I’m beyond the temporary care situation. We know I’ll need blood work, IV’s, and potentially IVIG for years (I’m banking on it working). Even if IVIG were to fail, the other options for managing my care involve IVs.

So get an IV. Who wants a port?

I didn’t want a port. EVER. The problem is that my veins really really really suck. We are down to two veins on my left hand, one on my right pinky, my jugular, and some potential options in my feet and ankles. There is one in my left arm that sometimes works. All of them are extremely painful. Yes, you heard correctly, even after the needle is out, I’m in pain. It itches, it swells, and it isn’t allergy related. My veins are just over it. The jugular is reserved for absolute emergencies. The hand veins are getting angry over being used 2 times a week, and then extra if I need blood work done. I had one in my right wrist up top, but it has swollen up and hardened. One of the ones on my left hand is threatening to do the same after today’s infusion.

The point is this: I have bad veins, but I need to access those veins on a regular basis (medically). We are scarring my veins with routine infusions, and that’s making emergent situations harder for me. After the status situation, I’ve realized that I could find myself in danger because of my veins. That is definitely not a good thing.

While I don’t want a port, I welcome the discussion with my primary care doctor. A PICC isn’t an option for a few reasons, first the dogs, and second what if I have a seizure? I know they stitch it in place, but it’s an accident waiting to happen. Throw in that I would totally get it wet, and I’d need it long term…why would I waste the time, energy, and infection risk? I’m hoping it all works out for the best, but I’ll keep everyone posted.

Symptoms wise I was dealing with randomly low blood pressure earlier this week. (Like 80/40 when I’m usually double that with my high(ish) blood pressure.) It went back to low normal with IV fluids. Today I was back to a weird 130/80. Not sure why my systolic is suddenly in the normal range, but I suppose it’s something to keep an eye on. (When the numbers get too close together it’s uncomfortable, so if I were to drop I would have to hope my diastolic dropped faster!)

The issue was likely related to dehydration and my autonomic system just giving up after the seizures. I’ve still been tired, sore, and just moody in general. I felt better for a bit today, after getting my Poly-MVA. I’ll feel much better tomorrow than I did today, and then I’ll have to start the process over next week. It’s weird because I dread the infusions because of the vein pain, but I also look forward to them because of how awesome it feels to have vitamins and amino acids!

Because it’s ImPORTant

Status Epileptics Likely, Scary Situation

Yesterday (I almost said today) I woke up at 4:30pm, but thought it was 4:30am. I was mad at the dog for waking me up, and confused by how many people were out walking around. Sunrise also seemed to be taking forever. I went to go back to bed, when I started to realize it wasn’t morning. I got confused, and I got upset. I was missing 14 hours of memory.

Fourteen HOURS.

The odd part is that, during this time, I had bursts of activity that I can’t recall. I poorly managed my finances, and bought things online, including a futon. I talked to people via text, and I have no recollection of any of it. The only reason I realized I was missing time, was that it was too hot for me too sleep, and the AC was set to 74, something I do during the day. I also couldn’t understand the date, and thought I’d missed midnight and couldn’t hand my quiz in. Then I started getting super confused, not knowing if it was Sunday or Monday. I still couldn’t sort out if it was morning or evening. I was so tired, but afraid that, if I fell asleep, I would lose more time.

After a few minutes I decided it was time to go to the ER. I was still having the most emotional mood swings ever, and I couldn’t keep the dates straight. I checked in, and things after that are kind of a blur. I don’t know how I ended up in a wheelchair. I just remember warning the triage nurse that I felt a seizure coming. Apparently I had a pretty gnarly seizure, got an injection in my arm, and they managed to eventually get an IV in afterwards, but it’s still blurry. I could have spent the night, and had CT scans and MRI’s, but I didn’t see the point. I asked a friend if I could stay there, they said yes, which was enough to appease the doctor into letting me leave. I still have to see neurology ASAP.

I shouldn’t be having seizures. I’m on beyond the max dose of Keppra, and 150mg twice per day of Vimpat. The fact I did have seizures is really annoying.

I’m still having muscle spasms, and I’m exhausted. Losing that much time is seriously terrifying. Having missing time between here and the ER is scary, too. I have had issues in the pass with strings of seizures and losing time, but I was alone in my room, so I don’t have any way of knowing how many seizures took place. Today I’m still finding it hard to remember words, how to spell things, and keeping my focus. The doctors have said it will likely take several days or even weeks, to get over having multiple prolonged seizures. The length of the seizure they witnessed was over 5 minutes.

You win some, you lose some, and flares aren’t predictable. 

The headaches and exhaustion are a good sign my neurological system is involved, but I ignored it and now I’ve paid the price via seizures. This might mean a course of steroids again. I can’t imagine they’d increase seizure drugs when it’s probably inflammatory from the Behcet’s Disease.

Keeping this short because my brain is mush.

Status Epileptics Likely, Scary Situation

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 🙂

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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?