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Cancer, Chronic pain, Digestive disorders, Eye disorders, Healthy Living, Other

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Tue, Dec 3 9:20am · What makes something better? in Just Want to Talk

Good morning JK and Becky and anyone else who might be reading. I plan on answering your question JK but I’d first like to say that perhaps I should start my own blog where others can reply if the want to but if I understand blogging it’s more like a journal and or op/ed where I can ramble on and not worry about what tiggers think about the length of my posts.
To you questions: 1 are the doctors in the same facility? At this time the answer is no. It’s the VA in Florida that makes all of these discoveries. As my NC VA doc says: “ if you’ve been to one VA then you’ve been to one VA meaning that it’s rare to find two VAMC ( MC = “Medical Center” ) each facility is run be the ego of the med center director or CEO or whichever title the particular MC seems to be the highest. In one facility the “ HEAD “ was a Shrink known to the patients as “ The Pope “ I didn’t know that he knew about that handle and it infuriated him. I almost earned myself a MacMurphy handle when I asked him if he saw himself as “ Pius “ or “ John Paul “ he got so RED in the face I commented that his fury was showing so maybe he was “ The Fuhrer “ which really brought out the red rage. I did think he was going to lose it. Then I speed the word around and there was lots of heel clicking after that.
That makes me think about the “ WHY “ question that seems to always pop up after a mass shooting. It puzzles me that the media often says that it’s the loved ones who want to know why. I want to know is there an answer that will satisfy the question and or curiosity. I think it’s as obvious as the nick name for the leaders of the group The Pope or The Fuhrer we create our own realities which includes love and hatred.
I mention this mostly because at some point I look at my own rage over the insensitivity of doctors. I feel all of the doctors forge ahead fueled by their ego. I think I can lose my voice permanently and if I do it’s because I’m still the patient. I’m still nobody. If the ER is where I have to go I have a history of over two years where I’ve been blown off and I’ll walk into an ER where no one knows me, I have no voice and I have to try to explain why I’m there. I would gladly pay a reporter to follow me in and report on everything.
But what are the chances?
Right or wrong I’ve been recording every call talking to the camera spelling out every aspect of my call. I think it might come down to a law suit because they seriously do not care and have blown off my complaints
We’ll see

Thanks for your comments

Mon, Dec 2 5:41pm · What makes something better? in Just Want to Talk

Well JK it was called benign two years ago. What seemed odd to me was over that two year period of time every doctors visit was a deja vu with them feeling my throat and telling me that my glands were swollen and hard but not doing anything about it. Meanwhile my voice was changing and swallowing was painful and hard. Now I choke most of the time and now it feels like I’m swallowing blood. But during that last visit he gave me his dissertation about Vit D being a bunch of hooy . He refers me to ENT and like ground hog day I can tell you exactly what they will do for the third time. Looking at why I have no voice they will numb my nose and throat, stick a camera in my throat see nothing wrong with my vocal cords, voice box, larynx and declare that it’s GURD , rx Prilosec collect their money and not even say good bye. It’s not what they think it is but this is the process. Worst of all they read my records, read what the last doctor told me and figure he was right and I didn’t follow orders. How many times does this happen to us all. Those damn electronic records are a curse and not a blessing but the doctors have their heads to far up their own egos that they can’t see the Forrest through the trees

Mon, Dec 2 12:07pm · What makes something better? in Just Want to Talk

Hi Becky, thanks for picking up on the possibility that something may have happened.
I’ve tried to find out who responded to my post about my low Vit D with the link to the Mayo article about Hyperparathyroidism. That article was surprising and potentially alarming considering what has been going on with me and “ symptoms “
I sent 3 or 4 private messages and unless I’m missing something no one replied. I think that I tried posting in that first post, then wrote another one then I think I wrote this one which a copied and cut since it was once again too long.
Today I got very concerning news and it was so awkward getting the news. The news was there but it was like a Chinese box puzzle getting it fished out.
To the best of my knowledge the news was sent snail mail which I haven’t gotten yet. My throat is closing down so I have a rapidly vanishing voice. 2 plus years with symptoms dismissed for reason I do not know for sure but I do think my guesses are fairly accurate. I literally had one Doc tell me: “ you have too many symptoms. Pick one or two and we’ll work on them.
I also got a large envelope in the mail from the pain clinic who I was told was given the job to police my complaint “ in it are two copies of my medical records from that pain clinic. It basically told me what I already know but my complaint was that I just wanted to ask the P.A. assigned to me if she knew about the extremely low Vitamin D as a possible reason for my new killer back pain. She would not answer that question and they kept dismissing my question and insisting on making an appointment for a face to face. I said I would make arrangements for that face to face if she would just answer that one question so I can prepare records and email her info on how “lumps” or “ nodules “ were discovered on my thyroid and salivary glands while doing an MRI or my cervical spine. The had me return to the VA the next day for biopsies. They called back and said “ NO CANCER “ which always sound good. Today one of the social workers read the report and said that the lumps were called “ benign “. Interesting word because the lumps never went away and I think they grown bigger and more benign(er) over time so now I struggle to talk and to swallow often choking when I drink as fluids seem to “ go down the wrong pipe “ as my Grandma used to say.
The VA’s urgency factor has me scheduled for a CT on Dec 20.
What are the odds that I’ll need to go to the ER before then?

Tue, Nov 26 7:52am · What makes something better? in Just Want to Talk

If this makes no sense that is part of the story. I’m watching my doctors throwing out everything that doesn’t make sense to them.

Tue, Nov 26 7:49am · What makes something better? in Just Want to Talk

Written down, walked away to do something else, Sweating like pig, vision impossible to describe. Bottom line it’s essential to notice the nuances of change but also critically important to get someone to listen and hear.

I’m floating in space and hope that someone hears the report.

Sun, Nov 24 4:30pm · Synchronicity in Just Want to Talk

On NPR, and a fictional show, and a talk show this past week the themes was doctors hearing whatever they hear, maybe because of training or whatever is current and popular ; but not necessarily what one is coming to them for : HELP.

One of the shows mentioned “ second opinions “ and raised the question of the purpose of the second opinion. At least in part you’re looking for new eyes and a different point of view as well as a new assessment and explanation.

I’m thankful to the person and people who helped me with the Mayo Clinic story about Hyperparathyroidism
I think it was another Veteran who was insistent that I read specific and particular parts of the article.

I’m not sure that this is what I have but my VA doctor was willing to listen to my case history and found missing information so he is willing to revisit some of the testing.

I’ve lost my voice as well as have horribly impaired vision.

I did not ask him to give me an exact list of what he wants to do because the VA has gotten so screwed up in an attempt to allow us to see private providers. A week has passed and I received 6 phone calls during my one hour therapy session. Trying to return those calls have come up empty. I called my private doc asking him if he could make the appointments for Medicare. He was happy to but the VA has not returned his calls. Friday with some help from another former soldier who now works for the VA she got me thru to ENT next apt is Dec 21.
I’m not sure waiting that long will serve me because I seem to be suffering from a rapid decline.

Any suggestions?

Sat, Nov 23 4:06am · Movies, books, characters and a little bit of why in Just Want to Talk

Compared to many of my friends I hardly see anything compared to them. The films I named are mostly well known. But there are these small films that are often not well known that are GREAT in my opinion, like a movie called Rumble Fish directed by Francis Ford Coppola and Brazil that is so heady. And a Rock Hudson film that most people never heard of but Rock says it’s his favorite of his own film. In an odd way it fits in well here in connect

Sat, Nov 23 3:57am · Movies, books, characters and a little bit of why in Just Want to Talk

Honesty JK says so much and it can be brave IMHO just saying your truth. If you don’t like scary movies don’t see Psycho or The Exorcist or Alien.
Have you seen Blazing Saddles?