In my last post I ended up in a different direction. I did mention my pain management appointment was canceled two hours before it was scheduled to begin. It was rescheduled – he was late that day. I was an ad-on since they canceled my scheduled appointment from 3+ months early. He was late, he had left work, he had his coat on and stood against a brick wall while calling me for my “official” appointment. Not exactly HIPPA acceptable. He said I had a lot of history. He said he needed to do some research and that his team would reach out for specifics on what I have tried, what has worked and what has failed, as to not put me through the same thing over and over again. That sounds promising but I had doubt...

The truth is he did not record our meeting.
He did not tell his staff.
It was a nonexistent event.

…We went on vacation. Really a work trip for Paul but more playtime than not.

I am always concerned about travel because of pain and not knowing when it will be set off but I do it anyway. Hope for the best. Plan for the worst. I made it through a full day of travel, plus 3 days in Puerto Rico but on the fourth day I broke. I was in excruciating pain and I never did hear back from the pain management office. In desperation, I crawled out to the balcony with an ice bag early that morning while Paul slept. As the the waves rolled in, I sent a message with the details I would have a given Dr. Markman’s team if they had ever called. The phone rang shortly after – it was someone from his office. “Have you actually had an appointment with him?” What now?!
He did not record it.
He did nothing.

I will have to do another zoom appointment — again this will not help pain but I am not allowed anything but this.

No, he will not give me steroid injections for the acute pain because “it’s a Band-Aid.”

No, he will not refer me to the neuropathy department where there is a “painful small fiber neuropathy clinic.” They will only do what has been done before (how does he know). “You are an intelligent and well put together woman, I don’t think you want to do more of the same.“

No — I want a damn steroid shot and flattery (yet true) will get you no where and I see through you and trust you even less.

He said he would help find me different doctors.
Oh, I said you mean mental therapy. He denied that it would be only mental health. He dismisses the reality of my physical pain. How is it that it’s 25 years ago again and it’s “all in my head.” F* that shit. Just F* it. 

It took him more than three weeks to add notes and register that the appointment happened. Today is Memorial Day. It came in last night at 10:30 PM. It says he referred me to doctors. He did not. The last line does have two names without notation. I look them up. One is a psychiatrist and the other one is a psychologist. Of course. I would expect noting but the same lame, unethical doctoring here in Rochester. University of Rochester is a JOKE! Medium size fish in a little pond of Rochester but also, a guppy in an ocean filled with sharks and whales. I had thought a small research hospital may try a different approach. NOPE!

Some of his notes that are of note…

He used my pleas for help when I was still away to create bullet points. This is a clear case of “out of context” information. Bullet point: can go on vacation and walk 3 to 6K steps. Apparently, disability means you may not go on vacation, enjoy life or try to be have a better life. That bullet point was only the one line.
He left out the fourth day I broke and wrote as much as I could because he didn’t do his job the first time.

He left out that I pleaded for a steroid injection. Am I not worthy of relief from acute pain that is crippling? It took three weeks of lying on the couch and doing absolutely nothing to be able to walk a few steps again. 

Was vacation worth it? Yes!! of course. But should I have to take three weeks to recover from five days away? How could this possibly make me a “healthy” person?

He wrote: “The syndrome is not clearly related to the patient’s previous diagnosis of acromegaly and his treatment though the timing of onset is coincident.” I’m not a “him” the rest is also false and was not proof read. In one brief 20 minute zoom video with no lab testing, no hands-on physical exam, he put into my legal medical record “it’s a coincidence.” How does he know? I’ve never seen him in person. He has never felt the knots, the swelling – the tender tissue. He has no experience with acromegaly, let alone, a patient in remission who had a late diagnosis of 10 years, starting 25+ years ago, with accumulated damage.

Turns out that the zoom conferences with new doctors who have no idea who you are need to get to know you. They need to take stake in your health and actually try.

I’ve already had a 3D CT scan by a Chiropractor since being home from PR. The chiropractor has also reviewed my most recent spine MRI but the 3D scan shows more… abnormalities on the right side that have been there a very long time. The exact place where my pain started 25 years ago. This is not a coincidence. You do not have a rare disease, acromegaly, which grows bone, tissue and organs and get away scott free when you have a late diagnosis.

I am not “pro” chiropractic due to past history but the scan shows more than any MRI, CT scan or x-ray can. He only uses a narrow gun to tap two spots. It feels like a finger flick. On the next visit I asked that he check my hips. Not surprisingly they are twisted. My SI joint is out. Tap, tap, tap. I felt funny – less pain but exhausted and out of sorts. But did you read that? LESS PAIN in the area I have been complaining about for YEARS!!!

I have neurological damaged and I cannot pop a pill or meditate my way out of pain. There is absolutely a place for certain medications and there’s always room for meditation. But physical impingement is physical… No pill can undo that.

And for the record – if you are disabled and in pain, go on vacation!! This does not mean you are not disabled. This does not mean you are not in pain. It means you are trying to live your best life.

He wrote “believes she will always be in pain” – again, out of context. That is what every doctor wants me to understand. It is stated over and over again. In fact, I must agree that I understand all of the pain cannot be removed but the goal is quality of life. Again, Dr. Markman used selective editing.

I will not remain in Rochester, New York. New York is a beautiful state. It is the state both of my parents are from even if from opposite ends. I have had family here for over a century, just in NY. It has so much to offer but it is disgusting in it’s politics and it overreach in control. 

The wind is blowing.

I am in the middle of other testing – so that will have to wait to be documented. In the meantime I will keep moving as best I can with days that have no movement at all. No movement, just rest is actually allowed. It does not make me less than. This is my life.

If a pill can’t fix it then forget you — modern medicine means “pill pusher.” Pharmaceutical companies should not be allowed to be involved in the conversation with medical professionals. They can be called in later for what is needed and developed. 

My biggest complaint that could cause me issue in the future are my medical records. They are full of lies. They are by law considered legal documents. I do know Rochester, New York, of present day, is void of honesty and integrity. I know that first visits need to be in person. I do know that vague zoom meetings should not hold permanence… Not until in-office visits and exam are completed. There is a time and place for video visits. Pain Management is not one of them and it is certainly not for diagnosing.

No more ableist doctors who are arrogant and ignorant – who only do harm and rack up my medical bills. If they refuse to treat me then they need to not be paid. Call it a free consultation. If they take you on, you pay, otherwise…NOPE! I see my insurance bills. The insurance company is paying out $500-$1500 a visit… It’s almost been a year and nothing has been done.

Dr. Markman bullet pointed that I believe I have an autoimmune disease. I do. I’ve been told I do and that I should be tested for every single one because the tests are not accurate. Wondering why there is no testing? Let me tell you… a very good, competent doctor may see all the signs of an autoimmune disease but will not test for it. They send you to a rheumatologist. This has been an issue in the past because a one-time-visit doesn’t teach them anything about me. Many autoimmune diseases do not have to be proven by labs. Presence of certain symptoms for extended periods of time give a doctor the ability to diagnose. I’m also baffled at the lack of knowledge of small fiber neuropathy. He mocked me. My medical records mock me as well. I find it odd that so many doctors are ignorant about small fiber neuropathy. They think it’s only in your hands and feet. They think it is diabetic. I am not diabetic. They say it does not cause pain… medical licenses need to be removed. These people need to be fined. 

SFN can be serious, especially when discovered through the lesser know symptoms. Not through hands and feet but the trunk of the body and causing pain. You can do an internet search to find a rather lengthy number of autoimmune diseases that have a main symptom of painful SFN. My personal list that includes multiple symptoms in include:

Other causes may include:

An underlying cause isn’t always found. In these cases, small fiber neuropathy is considered idiopathic.

Why can I not reach these doctors? Why are they not willing to learn? Why are they so arrogant…? Dr. Markman said “We don’t understand much about pain but you already knew that.” He said I wouldn’t find any help in Rochester. That’s nowhere in my medical records. I need to start recording my zoom appointments. They say so many things and they write the complete opposites. 

Whatever happened to DO NO HARM

Deep. Breath.

I walked 4500 steps today. We walked the pier on Lake Ontario. Getting into the car afterward was more than uncomfortable but if we don’t push ourselves then what… rely on the Arrogant and Ignorant? Nope.

Have faith. Choose joy. Keep going. 

Ya know, There’s that saying… Doing the same thing over and over again is insanity. I pursued what I needed to and now I am done. I’m going a different route.

I had planned my next post, this post, to be about the things I have been doing but then this happened. I needed it to come to a conclusion.

Not kidding, the winds of change have come and I am ready.