Tuesday, August 14, 2012

Still No Answers

I have returned from Jacksonville with as many answers as before I left. Guess blood work is infallible and if it says nothing is wrong, then that is the supreme word.  

It would be nice to know why I feel so fatigued. I go to bed exhausted and wake up exhausted. Most mornings I lay in bed with my eyes closed, not because I don't want to open them, they are closed because I cannot open them. My eyes are so dry that the eyelids adhere to my eyeballs. I keep eye drops on my nightstand next to the bed and grope about trying to find it so that I can force a drop or two under my eyelids to lubricate my eyes enough to get them open.

 My mouth also is dry and has made eating a choir and not a pleasure. The act of swallowing food is much like swallowing a mouthful of cotton balls. My throat too is dry, many times food sticks and I find myself choking and gagging. The same goes for swallowing pills, I've resorted to purchasing chewable vitamins because I've had vitamin tablets lodge in my throat and block the passage to my tracheae. Thought I was going to die of asphyxiation. Only a person who has experienced chocking knows what it's like to try to take a breath and not be able to inhale . . . believe me, it is a terrifying experience. But nothing is wrong - doctors say it is not Sjögren's syndrome.

I have problems with dry nasal membranes and have tried a multitude of saline nasal sprays and aloe gels. I recall going to a doctor about 6 years ago because I had a bad case of the flu. I didn't mention anything about my dry eye, nose, mouth, throat problem, but as soon as the physician viewed my nasal membranes he prescribed a round of antibiotics for my flu and a steroid nasal spray for my nasal dryness. It would have been nice had I been able to use it but, like so many things, I had a reaction to it.
I have reactions to many medications. Where once I was able to take anything without worry, I now have reactions to even simple OTC meds. My dry mouth and throat have led to heart burn, acid reflux and there are signs of damage to my esophagus. However I cannot take Nexium because of allergic reactions and side effects. I took Prochlorper (for nausea) and suffered extreme restlessness, which I later found out was a serious allergic reaction called "akasthesia".

I get sharp little pains, like a pin prick (if you've pricked yourself while sewing you know what it feels like - startling yes, but on the Richter scale of pain it rates, at best, a 2) these sharp pricks can occur anywhere, from my scalp to my feet. I also get really quick, intense stabbing pains, mostly in joints (could be arthritis) and then there are the intense cramps in my feet, where my toes bend in directions that I never knew were possible. Yet again, there's "nothing's wrong" with me. 
Some time back I began noticing things left permanent indentations on my skin. I have marks from ten years ago caused by a pair of reading glasses, marks on my arms merely from having crossed my arms. I cannot wear reading glasses, sunglasses, visors, hats that rest on my forehead, or socks with elastic tops (I've spent hours pulling out the elastic from the tops of socks). Also cannot wear tight belts or clothes that have elastic waistbands or sleeves with elastic in them.
Three months ago I wore a soft, stretchy, sports bra (one that I've had for years and thought it was pretty much all stretched out) but when I took it off I found it had made a depression from my left shoulder all the way to my armpit. The impression is almost an inch wide at the shoulder and widens to about two inches alongside my left arm and breast . . . that was 3 months ago and yes the impression is still there. Well, so much for my ever wearing a bikini top . . . or for that matter strapless dresses or spaghetti strapped tops. But . . . according to the doctors there's nothing wrong, I do not have an auto-immune disease.

I am paranoid about going to the dentist or the ophthalmologist. The last time I saw my dentist, he rested his wrest on my left eyebrow. Since his hand was in my mouth there wasn't much I could say or do at the time. But that simple act left me with a left eyebrow that sags and is lower than the right brow, creating the illusion that my right eye is larger than my left eye, because there is more space between the right eyelid and the brow than between the left eyelid and its brow. I hoped no one would notice but not long ago a friend looked at me and said; "My god, Anna ! What's wrong with your right eye?  It is huge ! "
Well, Sandra, that's a long story, but I'm perfectly normal. Really, I am! There is nothing whatsoever wrong with me.

Since my condition is not "life threatening", only "life altering", the doctors aren't concerned and the only thing they could suggest was that I see a psychiatrist so that I can "cope" with the situation. I've been coping with it for over 10 years and don't need a therapist to sit back and ask me; "And how does that make you feel?"


  1. I'm so sorry Anna. :-( I had hoped you'd come up with some answers. It can be so frustrating.

    My grandma, must be going on 35 years ago now, had a dry scratchy throat, in one spot all the time. It was after she had a choking/coughing incident eating something, but the itch never went away. She was forever trying to clear her throat, but she never could. Years went by and she saw doctor after doctor, but they all told her there was nothing wrong, her throat was fine - maybe it was just a "habit" she had of clearing her throat. I don't remember what prompted her to see one more doctor, but he found what was causing the problem. Somehow a small piece of a walnut shell had lodged in the back of her throat, skin had grown around it and it was stuck permanently - making her always feel like she had something to clear away - that's because she did!! How all the other doctors missed it, we'll never know. She had to have minor surgery to remove it, but after that she was fine.

    So don't give up - I'm sure there is someone out there with an answer for you.

  2. I'm so sorry to hear that! I'm sure you'll find a specialist to identify your condition, I just hope this happens sooner to relieve it!

  3. I too am sorry Anna. It has to be frustrating, maddening, and depressing.

    I am usually full of suggestions, but not this time. I will keep you in my thoughts and keep an eye open for anything that might help.

    Soft hugs to you.

  4. I am so sorry to hear Anna... you know, I had depression 2 years ago. I wasn't crying, feeling sad, or anything like that. My main complaint was extreme fatigue, lack of energy... to the point my husband had to drag me off the bed one morning. I finally went to see a therapist who diagnosed me with a form of chronic depression, but not like major depression. He referred me to a psychiatrist and I took medication for about 3 months. That was enough to regulate my neurotransmitters. I went off the medication and have been ok since. I am not saying that's what you have, but the psychiatrist, the psychologist and an article I read all said the same thing: a lot of people go undiagnosed because they do not present symptoms such as sadness, crying, etc.
    I hope you find an answer soon. It is very hard to have something with your body and not knowing what it is.

  5. I hope you feel better, my friend. Thanks for coming to my blog and leaving your kind words for me. Dita.

  6. These are the times I wish that House really existed. So many unanswered questions that deserve answers! I will keep you in my thoughts my friend & send happy vibes for someone to figure out what's actually going on (hugs)

  7. Oh Anna my Dear, I too was hoping you would get some more positive responses.

    I totally understand your frustration but there are a lot of good docs out there and a lot of just "scrape by" docs too!. (I feel like I have seen most of the later)

    Anyway, what I want to do is encourage you not to give up. I know it gets exhausting going to see new docs because of ins. and all the stupid hoops they make you jump thru, paper work, long waits for new patients, millions of the same tests but sometimes having someone else look at the notes with "Fresh" eyes can help. I also know that if you don't fit into a certain criteria with some of these bigger institutions they will not want to take the time to help :(

    I also wanted to say, that never trust what the blood work says completely, if I was going to any of my previous docs and they saw my test results for my thyroid they would not have me on the amount that I am on (most probably 1/2 or 3/4) but what I am on helps me have more energy and I feel better with it. I am so glad I have a Naturopath to work with and who has known me long enough that we have a great working relationship.

    Have you seen a Naturopath? I am so sensitive to RX drugs and I do so much better taking homeopathic and herbal remedies, again I do not care what the data out there shows, it works for me. I know I have a better quality of life than I would other wise because I have this available to me :)

    Hope you can find more answer, thinking of you, cheers, T. :)

  8. Anna, I am sorry your trip did not lead to answers and that they could not help you to feel better. It sounds like a lot to live with everyday. I hope one day they will have an answer for you. Try not to let your condition hold you back from doing the thing you love and enjoy.
    Everyday Inspired

  9. How discouraging and frustrating to not get the answers you so need. Please don't give up, Anna. I know it's tiring to keep looking for a Dr. that can help, but there is one out there. I'll keep you in my prayers.

  10. Oh dear! I am so sorry to hear the doctors could not help you. Keep looking though for a doctor who can figure out what is wrong.

  11. hi I read your story and it sounds so much like myself! Can u send me a private email so I can share some stuff w/you? Good to talk to you again. I've been following your blog...


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