I Don’t Know What to Tell You…

I started to write down a list of decisions I made but gradually got lost on a rant about how confused I am.


  • I’m glad the side-effects of the Xyrem are winding down, but I haven’t actually had any positive results as far as not needing to sleep during the day. So I’m giving the Xyrem another week to start working and if I’m not seeing any improvement by then, I’m going to get off of it.
  • I’m going back to Cardiac Rehab, rain or shine. I asked my cardiologist for a script this morning. I stopped going to the gym when my heart medicine stopped working and now my endurance has dropped to an all time low. I NEED to exercise and have a place where I can feel safe exercising and have a place and time where I feel FORCED to exercise.
  • I want to get off my medications, but I keep coming back to the same conclusions: nothing treated them effectively, naturally. I’ve been taking Prilosec (or some form of antacids) and Allegra for the last year. I WANT to get off these medications, but the reason I got put on the Prilosec was because my acid was so bad that food was coming back up. Now food doesn’t come back up, because it’s under control with the Prilosec.1335347006472_1024686

If I’m not on even a small dose of allergy medicine, I get stuffy and am a lot more sensitive during sinus infections–so cutting the Allegra is probably not such a good idea either. Desipramene I thought I might be able to get off of a few months ago. Tried to ween down my dosage and ended up almost putting myself back into the hospital with a gastroparesis flare-up.

So that doesn’t give me very many options for cutting down on the medication. My cardiologist laid down the law as far as quitting beta blockers goes, and I know that would be impossible anyways since I spent three months laying FLAT so my heart wouldn’t race before I finally started them.


  • And this all makes me feel very bad, and like a failure because this week I’ve been accosted more than once about making the wrong choices about my health. And that makes me feel horribly sad, because I try so hard to do the right thing–the smart thing. And I feel like I’m just not living up to the expectations that other people have for me. I look down the road long-term and think: how will these medications affect me in the future? And what would I be like after weening off all of them? Will I be sick and uncontrollable? Or will I be normal?

Sometimes medication can feel like a costume you’re wearing and when you wear it for so long, you forget what you look like naked. And you’re like–am I good looking? Am I ugly? I can’t remember if I’m an innie or an outie. And then you get into a very existential mental diatribe about who you are as a person.

  • I think about my diet and how leading up to my heart freaking out I was having fruit smoothies for breakfast every morning and trying to stay away from excess bread. It wasn’t the healthiest diet imaginable–but considering my plight of gastroparesis it was pretty high in nutrients. And I still got sick, and then sicker. That makes me feel very discouraged about a healthier diet–but I do still think I should attempt one and start trying to incorporate some new foods.
  • At the end of the day–I’m just confused. I just want to go back to that place in my life where I felt like I was controlling my symptoms and making good choices–and like I wasn’t being judged by everyone around me. Everybody has an opinion on my disease and how I handle it. And frankly, I wish you would all fuck the fuck off. Not even my doctors know how to treat me. I have a rare disease. I’m basically a human guinea pig and my quality of life was shit before medication, and somewhat less shitty with it. Am I 100% sure that the medications I’m on right now are the right ones? No. Not even 44% And do I know if they’ll affect me negatively in the future? No. Not a clue. But neither do you, my doctors, or the New England Journal of Medicine.


I’m trying. I’m trying. I’m trying. I’m sorry that I don’t know what’s around every corner. I’m just trying to get somewhere better than here.






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2 thoughts on “I Don’t Know What to Tell You…

  1. […] so last you heard I was suffering a meltdown because of how I was being judged for taking the Xyrem and my general fumbling with trying to figure […]

  2. Lizz B.

    This is how my frustration is now. Luckily, we decided to try coming off my fibro meds because the pain was under control, and thankfully it’s going just fine. Though I have to take magnesium, if I miss it I can tell. But at least it’s a supplement instead of an anti-convulsant… But the rest of my meds I can’t come off of yet. My allergies are so bad that I take Claritin, Singulair, and Nasacort… and I still seem to have terrible allergy symptoms (such that the average person would not think I take a drop of allergy medication). I hate when people try to tell me that I’m not doing what’s right… I’m always just like “excuse me, who the f are you? and why do you have an opinion?” I’m also getting annoyed that my mom’s students (she teaches craft classes to adults) keep telling her to tell me to eat clean and stuff like that… I’m just like “no” because we don’t know the problem and since my life has been spiraling out of control I’m clinging to my diet because it’s the only thing that hasn’t needed to change to dramatically yet. Though now I’ll have to change it thanks to my IBS being totally out of control and my eosinophilic esophagitis being tricky and some other unknown digestive issues. Just yeah. People need to get educated or shut up 😛

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