Friday, June 27, 2014

How am I feeling?

I know this is long over-due.

How am I feeling?

Same as I always am. Nauseated and defeated.

The results from the skewering (colonoscopy/gastroscopy) are nothing. No problems. I am apparently very healthy on the inside. Biopsies fine. Everything is fine.

Well fuck me.

I hate the word FINE.

If you are chronically ill like me you can understand why that is so disturbingly upsetting. I want some help, I think that’s obvious with the doctors I’ve been going to. I would like a problem or an issue or something that I can find a way to manage or treat. With no answers I have no treatment plans which means I have NO IDEA how to make myself feel better!

As time goes on my days of feeling “normal” are fewer and far between. Sometimes I have a span of a couple days where I feel okay. I can sort of eat normal and go about my days. Then there are spans of days where I feel like a bag of shit. I don’t know why I feel this way or how to make it go away. Sometimes it comes out of nowhere and floors me wherever I am and whatever I’m doing.

All I can do is just attempt to manage my symptoms.

The worst is trying to work while feeling like this. I go through the motions of the day yet inside I feel like HELL. I try to make it through the day and when it gets so bad I can’t even sit upright, I take myself home to bed. 95% of the time I trudge through it at my desk. Why? I don’t want to be that person. I want to imagine I’m okay even when I’m not. The brain is a powerful thing. If I stayed home every morning I felt sick I would never work.

I have never felt so helpless for so long. 


My gastro doc throws her hands up in the air. The only saving grace is that she seems very interested and also has noticed a poor quality of life. Ergo she has gracefully given me a semi-permanent script for Zofran. Something I begged my GP for but who shook her head and gave me just a few. I asked for Zofran because the only anti-nausea med we have available to us over-the-counter is Gravol (Dramamine for my US friends). Gravol is wonderful BUT makes me feel high and knocks me the fuck out, ergo, making it impossible for me to use it at work. Zofran, I can still go about my life with little or no side effects.

She does think it might be gastroparesis (a wonderful complication of T1D) but I disagree. We are holding off on drugs to treat that to see what happens in the interim. She has me on a prescription ant-acid which is doing fuck all.

My naturopath throws her hands up in the air. I’ve officially lost faith in her. She was the one person I had a modicum of hope for. I paid for a food sensitivities test out of my pocket. Over $300 to find out I have next to NO food sensitivities. 

I’m really starting to think this is all in my head. My anxieties? My sensitive processing issues?

In the end….. (yes… I’m at the end) I am left hopeless. Sometimes helpless. Most of the time useless as a human. Everything makes me feel sick. All my bike riding? Sometimes I take Zofran just to ride my bike. Other times I come home so nauseous I can barely shower and get myself to bed. Granted there are times I feel great but like I said, those times are fewer and far between these days.

I have really learned to cherish the times I feel good because they never seem to last long.

As I seem to get worse the answers seem even farther away. They don’t exist. I’m done with all the doctors. I appreciate the help and investigatory nature they have done but for over a decade, no doctor has ever figured it out.

What’s worse? I hate writing these blog posts. I want to say something good for a change. I don't even know what to say anymore.

9 comments:

  1. The problem I find with some doctors today is that they believe every ailment - and its treatment - has already been discovered and all they need to do is match the list of symptoms we have with the one in their textbook, then their job is done. Sometimes I find myself wishing there was a real-life Doctor House (did you ever watch that show?) who relishes the challenge and will stop at nothing to find the answer. I've had (correction: I have) my share of GI issues, and after a handful of gastroenterologists failed to help, I've just given up on them. Granted, what I deal with isn't as nearly as severe as what you're facing, but it doesn't take too many tubes shoved up the ass to realize that no one is finding anything. So I just deal with it on my own, the best I can.

    I'm not trying to tell you to give up (despite my story), because I really want you to find a resolution, but I understand the frustration. I wish there were a better answer I could give you.

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    1. me too Scott. ME TOO! I've mentioned Dr.House before. I would pay anything for a Dr.House. (and yes one of my fav. shows!)
      I have essentially given up. All I can do now is live for the short moments I feel normal. The rest is doused in anti-nausea meds. I hope they give me a life-long Zofran script.

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  2. I don't know the exact symptoms you're having but let me briefly tell you about mine since they sound somewhat similar!

    Four years ago I started having what I called "episodes" - out of nowhere I'd get any mix of severe nausea, vomiting, stomach pain, "burpies" (tiny burps every few minutes), diarrhea. My pulse would race and my BP would go up.

    I went to the ER a few times, my family doctor many times. I had chest x-rays, ultrasounds, barium-what-have-yous, endoscopies, and of course blood work, blood work, blood work. They even had me give stool samples which was probably the least fun out of all of them. Everything came back negative.

    They suggested it was GERD and gave me a script for that - it only made everything worse. My only relief from having these "episodes" two or more times a day was Gravol which knocked me out, but hey, I wasn't suffering I guess.

    The gastroenterologist was convinced it must be gastroparesis because I'm a T1D. He said it quite non-chalantly, as if it wasn't a big deal, but it absolutely terrified me. He set me up for a test where you eat a radioactive breakfast and they track it through your digestive track. Whaddayaknow, it came back 100% normal. He said I was fine and that was that. No more appointments. There was no one left to see.

    So I suffered for months. Finally, after a trip to the US to visit my husband and another "episode" a doctor gave me some information about anxiety, specifically, panic attacks. He said my symptoms weren't quite the norm, but they did seem to fit.

    When I got back to Canada I talked to my doctor about it and she put me on Celexa to see if it helps. It was a complete 180. After a few weeks I had almost no more "episodes" - maybe once every two weeks or more compared to the multiple a day I was having.

    I don't know if you're currently on any sort of SSRI, but if not it might be worth talking to your doctor about just to try it for a few months! I hope you do find an answer, I'm so sorry you're suffering!

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  3. I've got nothing. But like so many, I'm here for you. It's exhausting to feel sick. It's exhausting hearing yourself complain. But if it's exhausting either way, go ahead and rant about it. We'll still be here. If that's any consolation.

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  4. I cannot even imagine what each day is like for you. I truly wish that you would find an answer - any answer, just so you could feel better.

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  5. :( I'm helpless except to be by your side.

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  6. I've nothing of much use or experience to add but to say that I'm really sorry you're feeling this way

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  7. I've got nothing to say. I'm interested like Dr. House, but no skills.

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  8. I'm sorry,Scully. I've been at that place where every test has seemingly been run & you are just over all of it.(this was about 8 years ago) I spent months in bed,too dizzy to get out of bed..every test coming back normal. My PCP told me it was all in my head. I went to Johns Hopkins and found my own personal Dr.House,who also ran every test in the book and every test in the book was normal. But didn't tell me I was crazy..referred me to somebody else who did find the(medical) issue,& helped me on a path of being able to function. And I cried,because finding someone who believed me in the absence of any positive test results was one of the best things that ever happened to me. There is a cause to everything,and that cause may not always be in the bodily system that manifests itself.(the best doctors realize this) I assume they have checked your gallbladder function?(that can cause nausea/vomiting issues) is there a medical teaching hospital where you are that you could go for a second opinion? Please don't give up,you deserve to feel better.

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