Sometimes I think I can become so unbelievably accustomed to something dysfunctional that I truly forget how it looks to the outside world because it’s become my normal every day reality.
I think this is probably true of all of us, we humans are a fairly adaptable bunch and when we are put in a situation that we cannot escape, we slowly adjust and become “used” to just about anything. It’s our saving grace and our enemy. We survive the most incredibly horrific awful strange circumstances but at the same time, we can become insanely complacent about bizarre, unusual, and often unhealthy situations. The longer it goes on, the more this dysfunction becomes engrained in our brain and our psyche. It seems like it often takes someone from “the outside” to remind us…THIS ISNT NORMAL and this isn’t ok and this situation should not be happening.
I had that happen to me this month when towards the end of our trip in Colorado, my best friend said to me “Genevieve you are ALWAYS nauseous, I don’t think you HAVEN’T been nauseous at least twice a day since we have been here. Do even you realize how little you actually drink or eat?”
For whatever reason hearing that from her made a difference to me.
Just to have someone who knows me very well and someone who I also deeply respect, say out loud that YES my stomach issues are really out of control and yes the nausea controls my life and yes it’s noticeable and yes yes yes I am not being a baby or over-dramatic when the third bout of nausea of the day leaves me scrambling for the puke bags I keep in the back of my wheelchair.
I needed to hear it as a wake up call and as validation. I needed both a nod and a shove, a hand on my arm while a firm hand on my back.
Once she said something, it’s like I began to really notice over these past few weeks how much my nausea controls my day to day existence.
The puke bags I keep stashed in my wheelchair, purse, and night stand. The amount of Coke cans that are always in the pantry…I HATE soda but it’s one of my go to’s when the nausea starts to kick up. The 4-5 items that I live off of most of the time because my stomach seems to somewhat tolerate them the best. The bags of ginger chews that litter my house and my mom’s house. The dinners we don’t eat together anymore because I can’t eat most of the food Sean can. The amount of events I cancel out of not just because of my pain but because I am too sick to my stomach to go out.
I think I especially needed that validation because I don’t feel like anyone else in my treatment team still knows what to do about my nausea.
Earlier this year my main dr did a SIBO test which showed that while I have NO SIBO (small intestine bacterial overgrowth), I did have delayed gastric emptying AKA Gastroparesis. He told me gastroparesis was the reason I had my chronic nausea and gosh it made A LOT of sense given that gastroparesis goes hand in hand with Small Fiber Neuropathy, Lyme Disease, Ehlers Danlos Syndrome, and CRPS (all of which I have) . I had an actual gastric emptying scan done in September to be certain I had gastroparesis and to quantifiably tell me how “bad” it may be and hopefully have my new GI dr get me on a medication for it.
Except my scan showed that I DONT have gastroparesis.
I cried back in April when Dr. Kaplan gave me the gastroparesis diagnosis because it meant I FINALLY HAD an answer and a plan. There was diet I could abide by and several medications to try. I had hope that maybe I could feel better. I cried again when the gastric scan came back as “normal” because it meant I was back to square one with no help, no reason, and no set medication regime and diet to help.
When you’re the sick person who is the one left to deal with a malfunctioning symptom day in and day out…oh it get’s exhausting and can become a total mind*** especially when there’s no answer, no reason, and thus no plan, no treatment protocol, and no idea of why this is happening or when you will feel better.
So this blog post is kind of a letter to myself.
(Dear Genevieve…your nausea isn’t normal and while it dictates how every day is spent, you aren’t alone in having to deal with this. It’s ok to want this to just stop. It’s ok to be mad and scared.)
From what I can remember, the chronic nausea took awhile to begin. It didn’t start with the CRPS and didn’t start with the Lyme. I began my first antibiotic (Doxycycline) treatment in May 2012 and while the medication made me HORRIBLY INSANELY nauseous and passing out because I stopped eating or drinking, once I discontinued it after 30 days I was fine.
I’ve wracked my brain and read through old documents so I am almost 100% certain that the nausea crept into my life in the fall of 2012, so it’s been exactly 4 years since it started. I was on 2 antibiotics by October 2012 and I think it was around this point that I began to struggle with nausea, I think it started off sporadically and then became a 24/7 issue. The antibiotics were blamed but it was the treatment I needed so I just dealt with it. I would be on anywhere from 2 to 5 different antibiotics (with VERY high doses) from July 2012 until Sept 2013.
The problem was that no matter what antibiotics I was on, I was nauseous. Some medications were more challenging but the nausea never fully went away. Some meds definitely made things worse, I even ended up in the ER April 2013 because a medication made me vomit so profusely all day that I became dangerously dehydrated. I finally stopped ALL antibiotics Fall 2013 to give my stomach a much needed break and did an aggressive round of Hyperbaric oxygen treatments Oct-November 2013. I hoped desperately that this would solve my nausea problems.
Since then I have done small doses of antibiotics, tons of different kinds of opiates, and god knows how many other kinds of medicines.
The nausea has never ever gone away.
By 2014 it was really really problematic. I lived off Saltines and Rice Chex for months and I couldn’t be downstairs if Sean was cooking dinner becausethe smell of cooked food disgusted me. I kept developing gastritis which then meant I was nauseous AND my stomach hurt. The GI dr I was seeing blamed my opiates for the gastritis but offered me NO help with the nausea. My endoscopy that fall showed that there was “nothing wrong”.
I had been nauseous for 2 years straight by this point and I had lost interest in food almost completely. I no longer was very interested in food even when I wasn’t nauseous so I just didn’t eat much. Ever.
In late summer I dropped down to 110lbs which is by no mean the lowest weight Ive been at but at almost 5’8″, it was a sign that things were NOT going well.
Not only did I not have an answer for why this was happening but I didn’t respond to ANYTHING anyone tried.
Anti-emetics like Zofran and Phenegren provided no relief (which I would later find out was because I didn’t metabolize them properly). Over the counter meds like Dramamine sometimes helped for a bit but then stopped. I spent a lot of money on sea bands, herbal supplements, expensive enzymes and probiotics. You name it…I’ve tried it.
One supplement actually worked for a month, it was amazing to not be sick to my stomach…but then it stopped working and I was back to square one.
Sometimes I actually threw up. Sometimes I would get strangely dizzy and pass out, this happened with vomiting and without. Most of the time I was just nauseous, riding this ongoing wave of feeling like I could “almost” throw up but it never coming to fruition. Sometimes I would make myself throw up just to feel some relief.
The nausea could happen because I ate something or it could happen even when I had eaten barely anything all day. I also would hit these weird spurts of tough morning nausea where I would dry heave every morning once I woke up. It would happen for 2 weeks straight and then stop.
To complicate things, I know I have to talk about the intersection of this nausea with my eating disorder.
I was in a bit of a relapse with my anorexia when I got sick with Lyme Disease.
Watching Sean’s mom die at the beginning of January 2012 was really really traumatic and the aftermath of her death was equally awful and painful. I stopped eating almost completely while I kept vigil at the hospital watching Robin slowly fade away, I guess on some level I just wanted to fade away too.
After she died, I still couldn’t get myself to eat enough. I became slightly obsessed with staying a size 0 for our wedding that summer to try and take my mind off the intense deep unending grief Sean was stuck in.
I obsessed over being a certain weight, only ate a certain amount each day, and felt panic at the idea of going over a certain weight because thats how I deal when life sucks.
Except life kept sucking and when I got sick with Lyme, I was already underweight. Only by a few lbs but it put me at a disadvantage because once I had chronic pain literally EVERYWHERE and was put on opiates, my appetite stopped existing.
When the nausea started, it only made things worse.
For the first time in my adult life, I got to be underweight the way my brain likes but didn’t even have to work at it. I didn’t care about food anymore, I didn’t desire it at all.
It was complicated.
I guess I just am meant to have a complicated ironic relationship with this body.
Sadly (but understandably ) having had a lengthy 20 year struggle with anorexia has colored some people’s interpretations of my nausea. Some people questioned whether I was being honest or even exaggerating the nausea. I understood why people felt that way but it hurt to have the validity of one of my worst symptoms questioned, especially when I pledged to myself early on to never ever lie about my nausea or use it to my eating disorder’s advantage.
I felt incredibly stuck, unable to stop being nauseous and unable to eat.
Thankfully in December 2014 shortly after I started seeing Dr. Kaplan I called him crying about my nausea. It was REALLY flared up and I was exhausted trying to work and manage my pain and my nausea. He decided to try an old school nausea medication Hydroxyzine…and it worked.
Having consistent relief for the first time in a few years was AMAZING.
I really didn’t want to gain any weight but I knew if I had a medication that allowed me to eat more, I should. I have put on some weight since the beginning of 2015 which I (of course) have mixed feelings about. Im not sure that I even eat that much more but I think being in the wheelchair and SUPER sedentary has allowed me to keep a little bit of weight on.
If I’m totally brutally honest, sometimes I feel like maybe my drs would take my nausea more seriously if I was underweight again. Some days I honestly feel that desperate, that losing some weight may get me the help I need…or is it just my anorexia trying to pull a fast one on me?
All I know is that I am beginning to feel desperate again.
The hydroxyzine no longer works very well. I switch between Dramamine and Hydroxyzine hoping one can work. I now also take Marinol, a synthetic THC pill designed to help people who are severely nauseous due to chemo and AIDs.
Marinol is the only way I can create an appetite for myself, I know I should want to eat but I often don’t know how anymore. It’s also how I mainly manage my nausea now, since starting to use it daily in June I have been able to eat a slightly wider range of food and drink more which is the other issue I struggle with. I am always dehydrated because drinking a lot of liquids also upsets my stomach and I am very rarely ever thirsty.
The marinol never takes the nausea completely away but it’s given me some hours each day where I am able to exist inside my body without feeling like I am going to throw up.
Sadly it seems like the Marinol is becoming less effective as well and for whatever reason my nausea is getting a lot worse again. I have thrown up A LOT this month, probably 2x every week with A LOT of dry heaving since I sometimes don’t have enough in me to actually throw up.
I need an answer. I need a plan. I need to know what is going on so I can eat the right diet and take medications and hopefully get my stomach back to some normalcy. All of my nausea medication is just a bandaid, it doesn’t solve any problem or address whatever the hell is going on.
I want an answer.
I just don’t know when this answer will happen. Is there even an a clear cut answer?
I hope that one day I will finally know why this is happening. I’m so tired and worn out and some days I just feel like giving up on ever having answer…but I also know that I am (as always) going to have to be my own savior, my own advocate, and my own detective.
So I am trying to dig deep and gear up for battle.
I am trying to get ready to fight for myself again.
“Someday I’ll fly
Someday I’ll soar
Someday I’ll be so damn much more
Cause I’m bigger than my body gives me credit for”