I was documenting my health journey of this year anyway, so I figured I’d create this short sort of bulleted synopsis to share. Why would I do that you might ask? Well, it isn’t about me. Sure, I’m the subject, but this is about the system, not me. And since the system is so messed up, I thought sharing a personal experience would help shed perhaps just a bit more light on that reality. NOT THAT ANYONE HERE NEEDS TO BE REMINDED OF THIS FACT. 
It started last January with a consult with my main doctor. I was in a miserable state, mostly bedridden since early December, and no real answers or treatment avenues lined up. Some days the symptoms were so atrocious that all I could do was lay there, half in oblivion with too little energy to even think. Winter was roaring outside the windows and the sun goddess was far to the south.
In this consult, I told my doctor that I was ready to run the medical gauntlet this year to try to gain answers and forward movement. I was willing to invest the time, money, and even more valuable, energy. So it began. He sent in referrals for me to see a pulmonologist, a neurologist, a pain specialist, and a sleep specialist.
The first one to reply and get me an appointment was the pain specialist.
1-
February was my first appointment of the year with a western medical specialist. Keep in mind the insanity of covid was still running ramped. It was a cold, damp, snow flurry afternoon when I ventured out of the house to travel 45 minutes to the office. This was huge for me, absolutely huge for me to get out of the house and to this doctor's office!
When speaking with the receptionist to schedule, I made sure to tell them I had verifiable medical reasons preventing me from wearing a mask. She said that was no problem. I was heading to a pain specialist who also performed Stellate Ganglion Blocks for severe ptsd.
I show up and go into the building. Instantly I’m harassed by people from other offices about not wearing a mask. I try to explain and then just ignore them and go to the office. During check-in, the office managers come out and ask where my mask was. I hand them the signed doctor's notes detailing why I couldn’t. Meanwhile, I’m brought to the exam room for more check-in info. The office managers walk in with my notes, tell me I cannot remain in the building, hand me the notes and tell me to leave. They said the doctor would call me in my car for the consult… something I could have done from my bed at home mind you.
So they literally kicked me out of the building. 15 minutes later the doctor calls. He told me I was a perfect candidate for the treatment and that we would sign me up. But in a short time, he tells me he refuses treatment unless I don a mask for the entire procedure, even though the staff would be wearing masks and face shields. Even if I tested negative for covid prior to the appointment and showed no signs of illness, they would still refuse me treatment.
I had to contact Patient Advocacy to file a complaint. They were very taken aback a the doctor's behavior. I was told the hospital's regulations, including all doctor offices connected to that hospital made mask exceptions for those with medical conditions preventing them from wearing them. They couldn’t deny patients medical care if they couldn’t wear a mask. So they contacted the doctor to reeducate him and his staff and told them they had to treat me. The doctor merely changed his statement saying I was no longer a good candidate for the procedure, and he became untouchable by the law.
My healthcare team contacted him many times on my behalf, and this “specialist” simply stopped communicating with them. All of this took 3 months of back-and-forth BS. 9 months later my retired state police therapist contacted the doctor one more time. The doctor actually told my therapist that he admits after reading my extensive medical file, my spec ops history, etc, that he is afraid of me and so unable to take me on as a patient. Wow...
That was my first run-in with a specialist this year.
2-
My second specialist appointment was with a neurologist in a different state and different hospital. They ordered a few tests; mri of the brain, mrs of the brain, forced adrenal testing, and large fiber nerve testing. Now this appointment was in June, 3.5 months after the referral was sent in.
The first test was the adrenal test. It was set up. I was told to go to a specific hospital for the hour-long test. I show up, check in, and sit in the waiting room. The lab tech comes out and says they don’t do that test there, and that I’d have to go across town to the other hospital! So across town, I go for more check-in procedures. After waiting for 40 minutes I am called in. They draw blood and tell me I’m all done. I said that isn’t the test that was ordered. I told her she did the wrong test. She showed me the order screen and said she was just following what the screen said. I leave and call my ordering doctor to leave a message about what happened. 3 weeks later they message me that the hospital did the wrong test… wow, really?
Back to contacting Patient Advocacy. 3 months later the hospital admits they coded the order wrong and refunded me the money. Today the correct test has yet to be done.
3-
Next up was the MRI. This test was actually done properly!
4-
Next was the large fiber nerve testing. After driving 2 hours to get this test done, I had to wait for an hour for the doctor to become available to do the 10-minute test. And then a 2-hour drive back home.
4.5 months later I’m told the neurologist ordered the wrong nerve test. They should have ordered the small fiber nerve test. So all that time and energy for useless test results.
5-
The MRS scan was next. It is now August. Another 2-hour drive to get the 45-minute test done, and then a 2-hour drive home. 4.5 months later I find out the wrong MRS was performed. The neurologist ordered the right one, but the radiology department performed the wrong test! What the F???!!!
6-
August came around and I finally got a call from pulmonology… 6 months after the referral was sent in! Meanwhile, I had to start using an oxygen machine to breathe. I go into the office for the visit. No testing or images were done or taken. All they did was talk. After which, they tell me they will order images of the lungs. I go home. Two weeks later I’m contacted telling me the lung images are scheduled for February of 2023!!!!!!!!!!!!!!
I contact my main doc who can’t believe all of this is happening. He does a work-around and got chest images lined up for October of this year, still two months after the pulmonology appointment while I’m on oxygen machines.
I get the CT images taken. Later I find out they were just basic CT images as opposed to the detailed ones that should have been done. They showed lung damage that also showed up in lung scans 7 years ago. So the scans were useless beyond showing that all the lung treatments for 7 years (western medical and alternative therapies) did nothing to heal the damage.
So my pulmonologist sets up breathing tests… for February 2023. That is a year after the original referral to see them and have testing done was submitted.
7-
August was when the sleep specialist contacted me and gave me a home test kit. The whole ordeal was completely useless and a waste of time. The only thing I learned was that it takes a person 2 full minutes to realize that they have woken up from sleep. So we can wake up many times a night for a handful of seconds, or even a minute before falling back asleep, and never remember we were awake.
8-
I hooked up with two alternative health practitioners this year. The first one in spring told me my conditions were far too complex for them to feel comfortable treating, and that my system was far too weak and fragile to handle treatments. It was an acupuncturist.
The second one was this past autumn. They were the opposite. They seemed to think they had something to prove. So, even through great detail given about the complexity, age, and fragility of my conditions, and the overall system, they felt it to my benefit to go in as deep, and as hard as they could with a jackhammer energy. Interestingly they utilized sound and tuning forks. After each session, I would crash immediately, and crash hard! We did weekly sessions for a few weeks. After each session, I would get worse and worse, and my recovery time was longer and longer until I simply wouldn’t recover at all before the next session. Even though I told them my system required easy supportive energy, and couldn’t handle what they were giving, they brushed my concerns off like I never voiced them.
Finally, I politely said the modality was driving me down too hard and it wasn’t beneficial. I know my body. I’m very aware of it. I said I could feel the sessions were not healing and wished to discontinue. Rather than replying with how they understood, they instead told me it was my fault, that I just couldn’t hack what needed to be done, that I didn’t want to heal, and they couldn’t believe I didn’t think the sessions were healing… that they were “told” by my “higher self” that this is what my system needed. Right, a bullet would be a lot faster.
I’ve encountered a number of alternative “healers” in the past 7 years that have either refused to work with me, did more harm than good, or got something rolling only to ditch out the back door soon after. So it isn’t just the western medical field I’ve had issues with.
9-
December rolls around and I had a telehealth session with the neurologist, rather than driving 2 hours for a 30-minute consult and then 2 hours home. She simply tells me the wrong MRS test was done, the wrong nerve test was done, and that she didn’t specialize in dysautonomia conditions, so she will refer me to a neurologist that does. She knew back in June that I had multiple dysautonomia conditions, but now in December decides to refer me to someone who “specializes” in the disease! Of course, it will take months to get an appointment with another neurologist.
Now that we are almost to the end of 2022, I look back and realize how much time, money, and energy was spent gaining no answers. Today I know as much as I did about what is going on as last year this time, and am in just as bad of condition. Through my main doctor, I did have a number of correct labs pulled and run. But the rest, as you can see, was a complete joke of the medical system. How can that many foul-ups be done to one person in one year by the medical field… in two different states and two different hospitals? It clearly shows just how pathetic and inept the medical system has become, or perhaps always was. Though never have experienced this amount of screwups in the medical community in personal experience before this year. I mean yes in 2015 I went in for minor surgery, and the idiot surgeon performed an “extra” surgical nerve removal I didn’t ask for, but he felt I needed, that still hasn’t healed right and pains me to this day. But of course, he died the year after, so nothing to be done there.
I know I’m far from the only one. Here I’m in communication with many who have various levels of dysautonomia diseases, many, like myself, very severe. Most it seems have also been screwed over my the medical field; harmed, ignored, laughed at or exploited, and we still suffer 24/7 with no hope yet of any proper treatment, or even protocol for symptoms alleviation. I struggle with around 50 major symptoms daily. I’ve been diagnosed with multiple dysautonomia conditions as well as other issues; encephalomyelitis, post-exertional malaise, chronic fatigue syndrome, fibromyalgia, Hyperadrenergic Postural Orthostatic Tachycardia, lung damage and compromised vision are some. Not to forget and extensive, severe and complex trauma history that throws cptsd in the mix.
Well, there you have it, my medical journey this year. I’ve not been doing well at all the last few weeks, and so may not be able to manage much interaction here for a while. I do what I can, but this time of year that is very little.
Wishing you all a happy and safe Winter Solstice!
It started last January with a consult with my main doctor. I was in a miserable state, mostly bedridden since early December, and no real answers or treatment avenues lined up. Some days the symptoms were so atrocious that all I could do was lay there, half in oblivion with too little energy to even think. Winter was roaring outside the windows and the sun goddess was far to the south.
In this consult, I told my doctor that I was ready to run the medical gauntlet this year to try to gain answers and forward movement. I was willing to invest the time, money, and even more valuable, energy. So it began. He sent in referrals for me to see a pulmonologist, a neurologist, a pain specialist, and a sleep specialist.
The first one to reply and get me an appointment was the pain specialist.
1-
February was my first appointment of the year with a western medical specialist. Keep in mind the insanity of covid was still running ramped. It was a cold, damp, snow flurry afternoon when I ventured out of the house to travel 45 minutes to the office. This was huge for me, absolutely huge for me to get out of the house and to this doctor's office!
When speaking with the receptionist to schedule, I made sure to tell them I had verifiable medical reasons preventing me from wearing a mask. She said that was no problem. I was heading to a pain specialist who also performed Stellate Ganglion Blocks for severe ptsd.
I show up and go into the building. Instantly I’m harassed by people from other offices about not wearing a mask. I try to explain and then just ignore them and go to the office. During check-in, the office managers come out and ask where my mask was. I hand them the signed doctor's notes detailing why I couldn’t. Meanwhile, I’m brought to the exam room for more check-in info. The office managers walk in with my notes, tell me I cannot remain in the building, hand me the notes and tell me to leave. They said the doctor would call me in my car for the consult… something I could have done from my bed at home mind you.
So they literally kicked me out of the building. 15 minutes later the doctor calls. He told me I was a perfect candidate for the treatment and that we would sign me up. But in a short time, he tells me he refuses treatment unless I don a mask for the entire procedure, even though the staff would be wearing masks and face shields. Even if I tested negative for covid prior to the appointment and showed no signs of illness, they would still refuse me treatment.
I had to contact Patient Advocacy to file a complaint. They were very taken aback a the doctor's behavior. I was told the hospital's regulations, including all doctor offices connected to that hospital made mask exceptions for those with medical conditions preventing them from wearing them. They couldn’t deny patients medical care if they couldn’t wear a mask. So they contacted the doctor to reeducate him and his staff and told them they had to treat me. The doctor merely changed his statement saying I was no longer a good candidate for the procedure, and he became untouchable by the law.
My healthcare team contacted him many times on my behalf, and this “specialist” simply stopped communicating with them. All of this took 3 months of back-and-forth BS. 9 months later my retired state police therapist contacted the doctor one more time. The doctor actually told my therapist that he admits after reading my extensive medical file, my spec ops history, etc, that he is afraid of me and so unable to take me on as a patient. Wow...
That was my first run-in with a specialist this year.
2-
My second specialist appointment was with a neurologist in a different state and different hospital. They ordered a few tests; mri of the brain, mrs of the brain, forced adrenal testing, and large fiber nerve testing. Now this appointment was in June, 3.5 months after the referral was sent in.
The first test was the adrenal test. It was set up. I was told to go to a specific hospital for the hour-long test. I show up, check in, and sit in the waiting room. The lab tech comes out and says they don’t do that test there, and that I’d have to go across town to the other hospital! So across town, I go for more check-in procedures. After waiting for 40 minutes I am called in. They draw blood and tell me I’m all done. I said that isn’t the test that was ordered. I told her she did the wrong test. She showed me the order screen and said she was just following what the screen said. I leave and call my ordering doctor to leave a message about what happened. 3 weeks later they message me that the hospital did the wrong test… wow, really?
Back to contacting Patient Advocacy. 3 months later the hospital admits they coded the order wrong and refunded me the money. Today the correct test has yet to be done.
3-
Next up was the MRI. This test was actually done properly!
4-
Next was the large fiber nerve testing. After driving 2 hours to get this test done, I had to wait for an hour for the doctor to become available to do the 10-minute test. And then a 2-hour drive back home.
4.5 months later I’m told the neurologist ordered the wrong nerve test. They should have ordered the small fiber nerve test. So all that time and energy for useless test results.
5-
The MRS scan was next. It is now August. Another 2-hour drive to get the 45-minute test done, and then a 2-hour drive home. 4.5 months later I find out the wrong MRS was performed. The neurologist ordered the right one, but the radiology department performed the wrong test! What the F???!!!
6-
August came around and I finally got a call from pulmonology… 6 months after the referral was sent in! Meanwhile, I had to start using an oxygen machine to breathe. I go into the office for the visit. No testing or images were done or taken. All they did was talk. After which, they tell me they will order images of the lungs. I go home. Two weeks later I’m contacted telling me the lung images are scheduled for February of 2023!!!!!!!!!!!!!!
I contact my main doc who can’t believe all of this is happening. He does a work-around and got chest images lined up for October of this year, still two months after the pulmonology appointment while I’m on oxygen machines.
I get the CT images taken. Later I find out they were just basic CT images as opposed to the detailed ones that should have been done. They showed lung damage that also showed up in lung scans 7 years ago. So the scans were useless beyond showing that all the lung treatments for 7 years (western medical and alternative therapies) did nothing to heal the damage.
So my pulmonologist sets up breathing tests… for February 2023. That is a year after the original referral to see them and have testing done was submitted.
7-
August was when the sleep specialist contacted me and gave me a home test kit. The whole ordeal was completely useless and a waste of time. The only thing I learned was that it takes a person 2 full minutes to realize that they have woken up from sleep. So we can wake up many times a night for a handful of seconds, or even a minute before falling back asleep, and never remember we were awake.
8-
I hooked up with two alternative health practitioners this year. The first one in spring told me my conditions were far too complex for them to feel comfortable treating, and that my system was far too weak and fragile to handle treatments. It was an acupuncturist.
The second one was this past autumn. They were the opposite. They seemed to think they had something to prove. So, even through great detail given about the complexity, age, and fragility of my conditions, and the overall system, they felt it to my benefit to go in as deep, and as hard as they could with a jackhammer energy. Interestingly they utilized sound and tuning forks. After each session, I would crash immediately, and crash hard! We did weekly sessions for a few weeks. After each session, I would get worse and worse, and my recovery time was longer and longer until I simply wouldn’t recover at all before the next session. Even though I told them my system required easy supportive energy, and couldn’t handle what they were giving, they brushed my concerns off like I never voiced them.
Finally, I politely said the modality was driving me down too hard and it wasn’t beneficial. I know my body. I’m very aware of it. I said I could feel the sessions were not healing and wished to discontinue. Rather than replying with how they understood, they instead told me it was my fault, that I just couldn’t hack what needed to be done, that I didn’t want to heal, and they couldn’t believe I didn’t think the sessions were healing… that they were “told” by my “higher self” that this is what my system needed. Right, a bullet would be a lot faster.
I’ve encountered a number of alternative “healers” in the past 7 years that have either refused to work with me, did more harm than good, or got something rolling only to ditch out the back door soon after. So it isn’t just the western medical field I’ve had issues with.
9-
December rolls around and I had a telehealth session with the neurologist, rather than driving 2 hours for a 30-minute consult and then 2 hours home. She simply tells me the wrong MRS test was done, the wrong nerve test was done, and that she didn’t specialize in dysautonomia conditions, so she will refer me to a neurologist that does. She knew back in June that I had multiple dysautonomia conditions, but now in December decides to refer me to someone who “specializes” in the disease! Of course, it will take months to get an appointment with another neurologist.
Now that we are almost to the end of 2022, I look back and realize how much time, money, and energy was spent gaining no answers. Today I know as much as I did about what is going on as last year this time, and am in just as bad of condition. Through my main doctor, I did have a number of correct labs pulled and run. But the rest, as you can see, was a complete joke of the medical system. How can that many foul-ups be done to one person in one year by the medical field… in two different states and two different hospitals? It clearly shows just how pathetic and inept the medical system has become, or perhaps always was. Though never have experienced this amount of screwups in the medical community in personal experience before this year. I mean yes in 2015 I went in for minor surgery, and the idiot surgeon performed an “extra” surgical nerve removal I didn’t ask for, but he felt I needed, that still hasn’t healed right and pains me to this day. But of course, he died the year after, so nothing to be done there.
I know I’m far from the only one. Here I’m in communication with many who have various levels of dysautonomia diseases, many, like myself, very severe. Most it seems have also been screwed over my the medical field; harmed, ignored, laughed at or exploited, and we still suffer 24/7 with no hope yet of any proper treatment, or even protocol for symptoms alleviation. I struggle with around 50 major symptoms daily. I’ve been diagnosed with multiple dysautonomia conditions as well as other issues; encephalomyelitis, post-exertional malaise, chronic fatigue syndrome, fibromyalgia, Hyperadrenergic Postural Orthostatic Tachycardia, lung damage and compromised vision are some. Not to forget and extensive, severe and complex trauma history that throws cptsd in the mix.
Well, there you have it, my medical journey this year. I’ve not been doing well at all the last few weeks, and so may not be able to manage much interaction here for a while. I do what I can, but this time of year that is very little.
Wishing you all a happy and safe Winter Solstice!
