Friday, August 3, 2012

Turned the corner


Many of you have sent me emails, or postcards or left comments asking how I was feeling.  So here’s the health update.

If you recall, I took myself to the ER on July 1st because I was having weird and uncomfortable chest pressure.  15 hours and lots of tests later the pressure was gone, my heart and lungs were deemed healthy and I was sent home thinking maybe it was all just stress related.

Four days later after many repeated episodes of chest pressure, the nurse insisted I be seen again that same day, even though my doctor wasn’t available.

I saw the ass-hat doctor who diagnosed me with anxiety before he even examined me,  prescribed me heavy duty anti anxiety pills, patted me on the head and sent me home.  in spite of me calmly and rationally telling him why I really didn’t think this was anxiety.  and then not so calmly bursting into tears when I told him angrily that he wasn’t taking me seriously.   (thereby confirming his suspicions that I was just a hysterical middle aged woman)

I spent the weekend stoned on his pills.  I still felt like I had a large heavy stone on my chest, but at least I was too looped to give a shit.

When he called me back Monday to see how I was doing, and I explained that my symptoms were exactly the same, and the pills didn’t change it because this isn’t related to anxiety, he suggested I call a psychiatrist and have my meds adjusted.
SERIOUSLY?????  He can bite me.

So another week of feeling shitty (and pissed off) goes by.
Now, in addition to feeling like there’s a large farm animal standing on my chest, I also feel like I’ve swallowed a few golf balls and that they are lodged in my throat and esophagus.   I finally get in to see my real doctor, who is a very good listener.  She’s a bit mystified by my symptoms, but schedules a barium swallow and refers me to an ENT.

The ENT says my throat and larynx are fine, and the golf ball sensation may be related to reflux.  Something we hadn’t considered since I’m not having any heartburn or “classic” symptoms.  He prescribes an acid reducer, I wait for my next test.

A few days later, the radiologist who was conducting the barium swallow watched everything I drank creep straight back out of my stomach, and up to my esophagus to my throat.  Yup.  “moderate to severe reflux”.

After 14 days of taking the acid reducers, and giving up coffee, wine and chocolate,  (which is almost worse than all the other problems put together) I’m getting no relief, and in fact feel worse.  I now have an elephant on my chest, with a series of tennis balls in my esophagus, and major discomfort in the area just below my rib cage.  I’m tired, cranky, frustrated, too uncomfortable to be hugged, and missing coffee horribly. (I think I’ll have a glass of wine to relax…no wait…)
I’m also beginning to convince myself that none of this discomfort has anything to do with reflux.  That perhaps I actually have an alien living in my body and it will soon kill me, and because the doctors discovered reflux they are going to focus on that and totally miss the alien until it is too late. I am wise enough not to share this theory with my doctor.  But I do call her because I’m about to leave on a 2 week vacation and I don’t want to feel horrible the whole time.

So she puts in a super-urgent referral to a GI specialist and they squeezed me in yesterday.  And I saw a lovely, intelligent nurse practitioner who specializes in reflux, who assured me that every single symptom I’m describing is consistent with reflux and that I’m on way too low a dose of medication to do me any good, and that she will quadruple my dose and it will still take a good four to six weeks to start feeling better and three months to really heal all the irritation and inflammation.  and we’re going to look inside with a scope when I get back from vacation just to make sure there aren’t any aliens.  and it’s really not a problem to have a cup of coffee every morning and the occasional glass of wine and chocolate.  I love this woman.

SO I’m still rather uncomfortable at times, but I have been thoroughly reassured that this is normal.  and that I don’t feel better because I’m not supposed to feel better this quickly.  And that knowledge alone is such a load off my chest that the elephant has left town and only the large farm animal remains.  It’s progress.

I’m off to Maine tomorrow to laze about for two weeks.  Swim in the lake, snooze on the dock, read a lot of books, eat a lot of pie, luxuriate in daily coffee, make some art, take some naps.  Talk about good for what ails you.

Thanks for all your kindness and support.

23 comments:

  1. Thanks for the update. I was wondering. thank goodness you can have coffee again. that right there would skyrocket my anxiety. I've often said I'll give up just about anything but they'd have to yank the coffee out of my cold dead hands.

    I hope you have a fabulous time in Maine!

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  2. So good to hear from you - I was getting worried but was afraid to bother you. I can so relate to what you're going through - finally having an understanding of what's actually wrong can just change everything. I'm so glad you reached that point before vacation - which sounds fabulous by the way.. And you certainly deserve it!

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  3. Oh man.....what a story....I have been thinking of you. I hope the combination of the upped meds and the two weeks in Maine -- an a glass of wine once in a while - will all come together to make you feel like yourself again. Big hug.

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  4. so glad your going away to relax, just relax and have fun,

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  5. Glad that even though you're not better you can at least relax about the problem, have fun in Maine!

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  6. As someone who has anxiety, I know how frustrating it is to have a doctor chalk everything up to it! I would definitely insist on an endoscopy... I had similar symptoms about a year ago (only less pressure and more churning lava sensation) and was told I had reflux but I also ended up having a bezoar, which is an archaic word for when your food doesn't digest properly and turns into little rocks in your stomach! A few of the things they recommended for me was to eat many smaller meals instead of 2-3 big ones, take papaya enzyme for digestion and keep your upper body elevated when sleeping at night by putting an extra pillow under your head.

    Hope you enjoy your vacation!

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  7. Just reading about that ass-wipe doctor puts me on edge!! Thank goodness you finally got some REAL answers...and the go ahead to still have coffee (that woulda floored me, too!)

    Have fun....enjoy!! Maine is beautiful this time of year :)

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  8. safe and art filled trip to you,
    Cheers!
    jill

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  9. You are very wise not to take what the doctor says as gospel... It is kind of like car repairs, they have to go by symptoms and what they know from past experience, but if they are not willing to listen to the nuances of the problem from the perspective of the patient they will misdiagnose or miss the problem completely. Hope that your vacation does you a world of good and that you are feeling better very soon!

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  10. Have a GREAT time in Maine. So glad you found people who really heard you and talked to you. Doesn't happen often enough, and such a relief when it does. I hope you have lots of relaxation and that alone will help in the recovery process. Reflux is SO pukey! Hope you are back to your own creative self soon (without the farm animals, or at least not on your chest).

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  11. Oh I missed you, hope you really relax and do NOTHING and feel better.....xox

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  12. Wow I am sorry to hear you are going through all that. I really hope things start to look up soon. Have a great time in Maine. Enjoy your coffee and occasional glass of wine!

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  13. Have been thinking of you and worrying about. It does help when a diagnosis is made, and then you know what you are up against and what you have to do. Hope you can start to improve. Have a good vacation .... And rest, though I'm not sure that word is in your vocabulary. Love, Jez

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  14. Enjoy your holiday time and all the good things that goes along with a wonderful holiday :) My tip for feeling better in the long run : give the green smoothie in the morning a try...Big Hug xoxox

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  15. That just totally sucks! Hope your vacation goes good and your chest eases up. :)

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  16. Good to hear you've finally been listened to - I so hope you start to feel better very soon.

    Make sure you rest up on your vacation, sounds like you need it BIG TIME!

    x

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  17. I am glad to hear that you have found out what the issue is. First of all, I LOVE my nurse practioner, she is the best and LISTENS to me... I can totally relate, as had landed in the hospital with such severe reflux. I thought I was having a heart attack. Oh my goodness, your description of having golf balls in your throat is spot on! I have it well under control now and all by changing my diet, thank goodness.. I hope that will work out for you and you have a speedy recovery. Enjoy your trip! FranT xo

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  18. Rushmore! I had no idea all this was going on. I am so sorry to hear about this frustrating journey. I really hope you're feeling better soon, and that you can figure out just exactly how much coffee, wine and choco you can ingest. Big arty hugs from MN, tj

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  19. Hooray! Half the battle sometimes is knowing what's going on and what to expect. What a relief that it's something recognizable (to the right doc!) and fixable. I have been thinking about you and wondering how in the world you keep up with all your arting, mailing, etc. when feeling so crummy. I know you have an indominatable spirit - but now you can let it rest.

    Relax, rejuvenate, read (wow 3 of my fave words start with R) and enjoy your family. We'll miss your cheery self but know that you'll be back with bells on. Have a great trip!

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  20. I know you won't get this becuase you're bye bye, and I've been a bad blog reader lately, but let me just say that I"m glad you have stuck with this investigation to get to the bottom (or center?) of this and that you are going to be getting some relief. Also glad you are gone and doing nothing. I hope you are doing nothing but what you want to do!

    xo
    Chris

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  21. Wow, Karen...so sorry that you are going through this, so glad that you are getting some answers, and SO happy that you can have some vacation time to relax. Thanks for the update. Will continue to pray for intelligent medical care and relief and healing!

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  22. Hi Karen,
    Thanks for commenting on my blog and article.

    I'm sure you don't want to hear another "maybe it's this" layman's diagnosis but I have to say it. Most of my life I had stomach pain after I ate. So much that a friend's mother said "Denise, you need to see a doctor you always have stomach aches".
    In my early 30's I was again getting a lot of pain in the gut for no reason. It would last for six or 7hours. Sometimes it radiated to my chest and back. I had an endoscopy, where they found erosion in my esophagus. They thought that was the answer although no reflux medicine ever gave much relief.

    After talking to my hairdresser who had her gallbladder taken out, she said "get a sonogram done just to see". They could never diagnose her pains either.

    Sure enough, my gallbladder was impacted with stones. The doctor said "I never thought to check you for that because you were thin and under forty. Not a typical candidate for gallbladder disease.

    Since you are on vacation and can't get a sonogram done, the easiest way to see if the pain gets better is not to eat fatty foods. Or when you do eat cheese, ice cream, olive oil, check out how you feel 2o minutes later. It's a sure sign that there is gallbladder trouble. The symptoms can come on for hours and stop suddenly because pieces of stones get lodged in your ducts, causing pain. Then they drop out and pain is instantly gone.

    Also the pain can radiate to your shoulder, back, like heart attack symptoms, if these are your symptoms get the sonogram it saved me years of pain.

    Now, me and my hairdresser have both diagnosed many others with gallbladder disease. You'd be surprised at how many people can't handle fat in their diet.

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  23. My daughter was born with extreme reflux ... took her 8 months to get back to her birth weight type extreme!!!...and has suffered with it her whole life... but since also being diagnosed as a coeliac and going gluten free she is pretty much symptom free... she rarely takes any medication at all... it is awful though and a bit weird as to what foods set it off,honey always gave her shocking chest pain but she also finds that cloudy apple juice is fantastic at settling it down if it does flare up, though I honestly can't remember the last time it flared up... since then two of her cousins who were also born with it have been diagnosed as coeliac and have had the same great results after going gluten free... maybe it is worth getting them to check that as well because the medications are a bit nasty... hope the holiday has settled it all down and the cottage you have rented looks amazing...xx

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