Yep I said it. Or I could say lazy and disinterested.

When your answers need to come from a professional – that means a doctor yet they do nothing. It has been a strange world and I wrote this along time ago. Actually, just before the world shut down. But it still extremely relevant and it has been edited and updated. My last blog post ended with positivity on finding a neurologist that I trusted. The post ended with hopefulness but later on I found out she was an epic disappointment and a flat out coward. She back peddled so fast I could scream. Not only that but she knew I had been dismissed by more than half the specialists I had seen last year because they didn’t know what to do with me – so she tempered everything she had to say to protect herself. Another one under the guise and blame of misunderstanding put on me. NOPE. 

She, on the previous visit wrote down on the paper number one. “No more specialists.” She agreed I did not need a sleep specialist and she would continue to see me and she would write rx’s for my pain and sleep medications. I saw her write this down. I couldn’t believe she wrote down “number one, no more specialists” she told me I was seeing too many doctors, I needed to stop. I told her I already had. It was a stressful year of being bounced around and I put my foot down.

COWARD! She would not refill my prescriptions and lied because once again doctors write what they want in medical reports. She said her notes did not say she would write my prescriptions, I was wrong and I was believing what I wanted.

Has she met me?!

STOP! I went to her to cover my bases and the number one reason was to condense the number of doctors I had. So I know, beyond a shadow of a doubt that she agreed with me and said yes to taking over my prescriptions. Now, in late December she couldn’t look me in the eye or say “uncomfortable“… I hate meek, cowardly doctors. There should be a test for that before you can receive your degree. She failed epically. I had to say “what you are NOT saying is that you are uncomfortable with writing the prescriptions“ she again, not making eye contact, mumbled yes. PATHETIC!

She said I need the sleep neurologist. I’ve repeatedly mentioned all the specialists I saw in 2019. The first being a neurologist. The first in a long line. This in and of itself is stupid. There’s no better word than stupid. This revolves around one prescription clonazepam. I’m gonna have to do a post on “causes” doctors hide behind while they destroy those in need. This is not a dangerous drug. This is something I actually need for multiple reasons. So I went back to the sleep neurologist in January. I was scheduled to see the doctor but ended up seeing his nurse practitioner first. Both were deadpan at best with my taking up their time. I felt the same way. I have done the take-home sleep apnea test… nightmare. Yes, I’ve done it before in hospital, I STILL do NOT have sleep apnea. They really want me to have sleep apnea. I don’t. Please stop. The fact that I have Small Fiber Neuropathy, which the sleep neurologist added a diagnosis of restless leg syndrome, due to the neuropathic itch on my legs and told me that the number one medication for this exact symptom was… Wait for it… Clonazepam. I went through hell because of the first neurologist made me come off of it and use medical marijuana (which is 10x more expensive). More stupidity. I apologized to the doctor and NP for being there but nobody would write me Clonazepam. You would think I was asking for dirty needles and heroin. They really don’t want to waste their time with me. They just have to see me every six months so they can keep writing a prescription by law. They both expressed not understanding why my pain management doctor will not write these prescriptions. Why the neurologist will not write these prescriptions. Why nobody who sees me at any of the major medical centers in New York City for multiple reasons will not write the prescription clonazepam. They even said “have them call us.” Nope. They all declined. I digress. Let me continue with a neurologist at hand.

The neurologist that I thought was going to be a keeper said I did not need a neurologist because my pain was so widespread that my pain management doctor should be the one to handle all my medications. What?! That’s the stupidest thing I ever heard. Once again “stupid“ and when I told my pain management doctor who’s at the same hospital; He had to adjust his facial expression because, ya know, doctors don’t like to put down other doctors. Stupid. So when I have and unbreakable migraine – I do what now? Wait a month or two and hope that ketamine helps? Yeah, sweetie that’s not how it works.

More backpedaling.

She went on to defend herself. Saying she was brought in to find out if IVIG was actually an option for me with no autoimmune disease currently diagnosed although suspected. She found out the answer was “no, not a candidate and doubtful to help without an autoimmune disease diagnosis.“ she told me she did what she said she would do. Did she want a pat on the back?

I expressed how 50+ specialists appointments had gotten me nowhere, I was frustrated and I was not being heard.

She had the AUDACITY to say “do you know how that falls on my ears“

I am the patient! I do not care if you do not like my feelings! I was not disrespectful, just truthful. Regular words while LOOKING HER IN THE EYES! But now I say “do YOU know how that SOUNDS on MY ears!

I was shocked as she continued. She again stated pain management should take care of everything and she did what she said she would do… Should she be repeating herself? Does it seem like a good defense? No she did not do what she said she would do. Talk about cowardly passing the buck!

She concluded with “I don’t want to end this way but maybe you should see a psychiatrist“ EXCUSE ME! I said why on earth would you say that to me NOW?! She said to help deal with your pain. The words that wanted to spill out of my mouth… But I told her I was done. She told me I could still make appointments and come to talk with her… Why would I even bother. I said, no, we were through.

As she opened the door and backed into the hallway she said – I’ve always done what I said I do for you. I agreed she looked in the IVIG. I told her I never said she did not do that. But we did have other appointments about other topics. At no point did she ever say OK I found out the answer is no. No reason to come back. Many specialists that year already had… they are not that special.

Dr. Wu, covering your ass does not make you a good doctor. It makes you a coward. When you take what makes you uneasy, when you take back what you promised, When you put it on the patient and blame them you’ve done harm.

I do not care what doctors write – if they have re-worded my exact words to their interpretation of them they are not accurate. And they do not belong in my medical records. My exact words. My interpretation is represented in my exact words and that is what makes it MY medical record.

All-in-all New York City’s major medical facilities failed me epically. I planned to continue the fight in pain, exhausted and pissed. I had finally gotten into a groove with pain management. Realizing I needed a massage before and after my once a month ketamine treatment. The doctor realizing the ketamine was helping massage and not the other way around. He said it’s going to take some playing around to figure out what works best. And that I should get more massages. Thanks Doc, Are you going to pay for those massages?

All games came to a crashing halt with the government shut down of this nonsense, COVID-19. And make no mistake it is bullshit. Nobody thought about those of us who needed therapies. March, April, May… Crippled and in more pain than I have been in in over a decade…

No Massage allowed. That migraine hit with no therapy to help. All I could do is wait it out… Eventually my pain management doctor was able to have me come in for nerve blocks. 

This is not good medicine. 

I am a survivor. I have much to tell. Don’t give up. Don’t give in. Don’t take Doctors words as gospel. They do not, nor will they ever have the right. 

Keep Going

#patientrights #raredisease