What makes something better?

Posted by stuckonu @stuckonu, Nov 26, 2019

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.

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.

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@stuckonu Has something happened recently that prompted your post? Not sure I understand. Can you explain a little better?

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@becsbuddy

@stuckonu Has something happened recently that prompted your post? Not sure I understand. Can you explain a little better?

Jump to this post

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?

REPLY
@stuckonu

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?

Jump to this post

@stuckonu I am very sorry for what you are going through, your frustration must be through the roof. I hope something can be resolved in your upcoming appointment and that you don’t have problems before that necessitating an ER visit. If the nodule is benign hopefully it can be removed without too much trauma.
JK

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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

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@stuckonu

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

Jump to this post

@stuckonu It is very aggravating for doctors to rely on what a previous doctor has said. A new doctor should look at things with fresh eyes. I too have been through that. I had symptoms that were diagnosed as various conditions and then when things got worse the PCP I had just changed to relied on what previous doctors had said so I did not have a diagnosis for quite a while. He actually told me he was relying on what other doctors had said! I was sent to a neurologist and it was he who said he thought it was my liver. God bless him, he's a fabulous doctor. I actually felt bad that I had no reason to go to him anymore!

Are the doctors you are seeing at the same medical facility? I think that very few doctors will indicate that a doctor in the same facility was wrong. If you can, go someplace else. Is that possible for you? I know you have mentioned the VA. I know nothing about that, are you allowed to go to other places and have it paid for?

I can feel your frustration. This is simply not right.
JK

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@contentandwell

@stuckonu It is very aggravating for doctors to rely on what a previous doctor has said. A new doctor should look at things with fresh eyes. I too have been through that. I had symptoms that were diagnosed as various conditions and then when things got worse the PCP I had just changed to relied on what previous doctors had said so I did not have a diagnosis for quite a while. He actually told me he was relying on what other doctors had said! I was sent to a neurologist and it was he who said he thought it was my liver. God bless him, he's a fabulous doctor. I actually felt bad that I had no reason to go to him anymore!

Are the doctors you are seeing at the same medical facility? I think that very few doctors will indicate that a doctor in the same facility was wrong. If you can, go someplace else. Is that possible for you? I know you have mentioned the VA. I know nothing about that, are you allowed to go to other places and have it paid for?

I can feel your frustration. This is simply not right.
JK

Jump to this post

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

REPLY
@stuckonu

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?

Jump to this post

@stuckonu– You are surely experiencing the worst of the VA. This just stinks for you at a time when you should be taken care of with some empathy at least. At least you have your Dec appointment. Are you able to be as straight forward with them as you are on Connect? I bet that you are.
II wish that I could say something that would make a difference to this horrible situation. If you need to go to the ER than go!

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@stuckonu

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.

Jump to this post

@stuckonu– What does this mean?

Liked by lioness, Leonard

REPLY
@stuckonu

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

Jump to this post

@stuckonu I'm so sorry for what you are going through . Ive been reading all your post and want to add ,a friend here who is a VET not only has a Dr in the V.A. but another Dr that isn't connected with the V.A. This Dr treated him not the V.A. Do you have a Dr outside the V.A. that isn't familiar with all your comments with other Dr,s ? Why don't you go tell Dr your symptoms and let him do the workup on you . Or have you seen others? You have the right to go to other Dr.s and advocate for yourself.

REPLY

I’m not sure how long I’ve been away but when I came back yesterday I couldn’t find my post and I even mentioned it in another post about ways that would make it easier for me and I think everyone to find automatically were they left off. I know this is not that subject but perhaps there’s a connection for this reason: as I read the Mayo article I read about many complications including mood changes although in complete honesty I’m not sure they use those words. But anxiety and depression were words I do remember. I have a lot of those two words going on.
I want to answer lioness’s question about: “ why don’t you go to your ( outside the VA doctor and “ LET HIM…” do your work up. Unlike the old me certain things trigger in me an anger, not so much at people who ask questions but when I calm down and think about what IT IT, “ IT “ for me is all that is wrapped in the question especially when I think I see and or experience the reasons and details that In My Humble Opinion ( IMHO ) are the ultimate truth which is very directly of a profession that openly calls what they do PRACTICE. Think about that a moment. So, for the record I have not only asked other doctors to test me for other possibilities after reading the Mayo article I got the VA doc to do ALL OF THE BLOOD AND URINE TESTs turns out I have all of the signs and numbers to support HPTism. Notice the time of the year. Being sarcastic I’ve been saying that “ i’m Not NOSTRADAMUS “ but it won’t be until 2020 that a solid absolute DX will be known; if I live that long.
Without a doctor who takes this seriously or a group/support who knows I’m going through stuff and in a world going through crazy changes show me that they know and care like I do about my friends vs going off in their own direction like that heard of bison on the nature channel this weekend who were being chased down by two wolves. One 2000 lb bison gets pulled own by one wolf and the heard keeps running for a while instead of turning around and using their collective 2000 lb times 20 to go after 2 180 lb wolves.
In my head I knew that it’s not in their nature to support and save one of their own. They must have realized that the wolves were on a lunch break nooshing on one of their own. They actually stopped running, at a little grass and watched the show.
Marines ( all military personnel ) leave no one behind. I’m not positive about this but when I hear about 22 GIs commuting suicide a day and the degree of homelessness I think I know why: the family we leave behind doesn’t know how to “ leave no one behind “ after a few weeks or months trying to figure out what “ is wrong with our child, spouse, sibling, peer, loved one, they give up on them which signals the veteran to leave.
I’m not a shrink but I’ve sat in with war vets who remarkably have similar stories.
Now back to the doctors: I’ve been recording all calls with my camcorder so we can see how my behavior changes as I attempt to communicate with them.
Lioness no one knows how to listen let alone hear what’s being said. After 2.5 years they finally took a PTH test as well as calcium, magnesium, phosphorus and D everything is way off.
All I can think is that a patient can’t tell a doctor what to do. I walked in to an ENT doc and told him what’s been going on. He retested but interestingly enough he told me that he never heard testing after fasting so his numbers were off but not as off as the VA.
I’ve been keeping a journal detailing everything. I still don’t think ANY OF THE DOCTORS KNOW ABOUT THIS DISEASE!!!! Tomorrow I see an endocrinologist I hope he listens

REPLY

My air passage is closed down by a swollen thyroid and tension in my throat. I had no voice for three days My request for the doctor to call went unanswered. The ENT doc called me 6 days after requesting a call. I had to text him He told me that he never got the message. When he called my BP was 192/88 he asked me to promise that I would go to the ER if it didn’t come down in an hour. I got it down to 143/ 72 but it kept creeping up.
My brain keeps running through options and ways that I can keep calm and quiet my mind. I compounded a solution that help quiet my throat and helped me breathe
I’m so tired that I fell asleep in the yard sitting in the winter sun leaning against a tree. I woke up after the sun went down and I got cold. I couldn’t shake the chill so I used a heating pad.
PS also got fungal infection in my throat and on my foot.

REPLY
@stuckonu

I’m not sure how long I’ve been away but when I came back yesterday I couldn’t find my post and I even mentioned it in another post about ways that would make it easier for me and I think everyone to find automatically were they left off. I know this is not that subject but perhaps there’s a connection for this reason: as I read the Mayo article I read about many complications including mood changes although in complete honesty I’m not sure they use those words. But anxiety and depression were words I do remember. I have a lot of those two words going on.
I want to answer lioness’s question about: “ why don’t you go to your ( outside the VA doctor and “ LET HIM…” do your work up. Unlike the old me certain things trigger in me an anger, not so much at people who ask questions but when I calm down and think about what IT IT, “ IT “ for me is all that is wrapped in the question especially when I think I see and or experience the reasons and details that In My Humble Opinion ( IMHO ) are the ultimate truth which is very directly of a profession that openly calls what they do PRACTICE. Think about that a moment. So, for the record I have not only asked other doctors to test me for other possibilities after reading the Mayo article I got the VA doc to do ALL OF THE BLOOD AND URINE TESTs turns out I have all of the signs and numbers to support HPTism. Notice the time of the year. Being sarcastic I’ve been saying that “ i’m Not NOSTRADAMUS “ but it won’t be until 2020 that a solid absolute DX will be known; if I live that long.
Without a doctor who takes this seriously or a group/support who knows I’m going through stuff and in a world going through crazy changes show me that they know and care like I do about my friends vs going off in their own direction like that heard of bison on the nature channel this weekend who were being chased down by two wolves. One 2000 lb bison gets pulled own by one wolf and the heard keeps running for a while instead of turning around and using their collective 2000 lb times 20 to go after 2 180 lb wolves.
In my head I knew that it’s not in their nature to support and save one of their own. They must have realized that the wolves were on a lunch break nooshing on one of their own. They actually stopped running, at a little grass and watched the show.
Marines ( all military personnel ) leave no one behind. I’m not positive about this but when I hear about 22 GIs commuting suicide a day and the degree of homelessness I think I know why: the family we leave behind doesn’t know how to “ leave no one behind “ after a few weeks or months trying to figure out what “ is wrong with our child, spouse, sibling, peer, loved one, they give up on them which signals the veteran to leave.
I’m not a shrink but I’ve sat in with war vets who remarkably have similar stories.
Now back to the doctors: I’ve been recording all calls with my camcorder so we can see how my behavior changes as I attempt to communicate with them.
Lioness no one knows how to listen let alone hear what’s being said. After 2.5 years they finally took a PTH test as well as calcium, magnesium, phosphorus and D everything is way off.
All I can think is that a patient can’t tell a doctor what to do. I walked in to an ENT doc and told him what’s been going on. He retested but interestingly enough he told me that he never heard testing after fasting so his numbers were off but not as off as the VA.
I’ve been keeping a journal detailing everything. I still don’t think ANY OF THE DOCTORS KNOW ABOUT THIS DISEASE!!!! Tomorrow I see an endocrinologist I hope he listens

Jump to this post

@stuckonu I read your post loud and clear. Very glad you were able to convince a doctor to retest you. It sounds like you now have more than one set of values to work with, perhaps from different doctors? I am hoping that the formal diagnosis in 2020 comes very early in the year, to give you and your team a pathway to work on. Thyroid issues certainly can present in different ways, can't they. Good for your persistence.
Now, if you go to your profile, you can see all the posts your have put up here. And below each post you will see which group/discussion that particular post was placed in. This way you can go right back to that same thread to see others' responses in order. I hope this helps.
Wishing you a more positive day today, and that you are warmed up after your time under the tree.
Ginger

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