Sep 9
NULL
NULL , Posted on SUPPORT NETWORK Blog

What's really happening??

I am very reticent to even say how I have been doing, for all I've gotten from others, including
the medical community is 'quit your whining. After all, you ought to be grateful you are doing
as well as you are".
therefore, I walk around, afraid to even open up and tell anyone how I'm doing, even when they
ask. I've learned that most don't even want to know, and are sorry they asked!

I'm tired of fighting, of trying to get some recognition of what all I'm experiencing. I've had to
walk out on more than one doctor since the stroke, because of their refusal to even hear
what I'm saying. They will not acknowledge that I'm even going thru anything at all. After all,
what do I have to b - - - -h about?  I'm walking fine, I can talk, I can move my arms & legs,
what's the problem here??

Therefore , I will not go into details of my experiences, for I don't trust any sort of 'bulletin board.'
I'm so fed up having to justify my complaints, trying to convince anyone what has and is still
happening.  It's nice if all of the others find releif here. I woudln't even chance it. I even resorted to
calling my local aha and asked if they had any lists of resources of therapists  well schooled in
stroke survivors. I was promised a return call by the next day. Next week,no call, following week,
no call still, and it goes on and on, just like that.  You ask, why don't I call them again??  Because
I've wasted more time following up on so many calls/issues with promises of getting me the
requested info, and never getting anywhere, that I've given up. that was my last hope of any
kind of resource.

I am not even going to try. Might as well be one of those 'ingrates' I'm accused of being!!
                                                                                                               surprise
3 Comments
  • thedollhouselady
    thedollhouselady,
    I'm with you Trix. I've had SOB and fatigue for ten years. at first they found anemia, then a hiatal hernia. nothing fixed the symptoms. finally they found a heart block and put in a pacemaker. the PM solved several problems but i'm still SOB. no one wants to hear it. not my usually loving kids, not the doctors who I pay to advise me. I've never been a person who seeks sympathy, quite the opposite. I only want to know what's wrong so I can fix it. I think maybe they don't know what to do so they push us away. i believe you. i'm on your side. I wish you would post how you're feeling for others, like me. your experiences are valuable information. let's talk
  • dwrench
    dwrench,
    I hate to say it butt I know how you fell
  • dcolgrove1969
    dcolgrove1969,
    Keep your chin up and keep trying. You are fighting for your life. All it takes is one doctor who has seen a case like yours before. My husband had a rare disease known as Wegener's Granulomatosis disease. It was misdiagnosed many times before we finally found out what it was. We spent several years fighting our family practice doctor to diagnose him with something other than an allergy to grass. He kept going back until he finally made an appointment one day and our doctor was not in. He saw a new doctor there and she diagnosed him as having Primary Pulmonary disease. She gave us 6 more years with my husband that we would never have had. She fought along side us to get us to the proper doctors and proper treatment. He did have Pulmonary Hypertension but it took us 5 & 1/2 of those years to find out he had Wegener's Granulomatosis disease as Primary. It was not his new doctor's fault. Wegeners is a very rare disease. It took an emergency room doctor who had an idea and ran a test to find out that is what was wrong with him. Please, please do not give up and do not listen to your doctors. If you feel that more can be done for you, keep fighting. For us, it made the difference of my sons losing their father at ages 11 & 14 instead of 5 & 8.
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