Dis-appointment

The day before my appointment a friend emailed me and in her email she wrote "I hope you find what you are looking for at Cleveland Clinic". That made me stop and think. What was I looking for? Was I expecting a magic pill? Was I looking for them to think of one more diagnostic test that no one else had thought of that would shed light on what has happening in my head? was I looking for them to think of some "House" like diagnosis or treatment? I decided that what I was looking for was relief. I was looking for at least 1 of my many pains to decrease or subside. I often pray for it. I often cry and pray for it at the same time when it just becomes so overwhelming that I haven't slept for days, and can't sit, stand, open a jar, read a book...can't think or stop crying. That's what I wanted to find.

So yesterday I went to my appointment at Cleveland Clinic with my friend's statement in mind. I was not expecting a magic pill or one-step fix all, but  I was wanting some recommendations and insight that would lead to the relief of 1 of my pains. The 1 pain that at this time is not degenerative in nature and is "benign". When I walked in the doctor's office, the first words from her mouth were "I don't have a magic pill, or magic bullet for you. In fact your chronic daily headaches may never go away." WHAT??? What just came out of this woman's mouth??? NEVER GO AWAY??? She said a multidisciplinary program would work best for me...okay, I was with her so far. She said, "first we take you off of ALL of your medications, from Tylenol to Methotrexate." NOT GOING TO HAPPEN! "Then we put you on an antidepressant." KEEP DREAMING!

I listened to every word she said. She did not hear a single word I said. It didn't matter how many times I explained to her that SSRI's make me sick because of Serotonin Syndrome she insisted that I had to be on it. She asked what symptoms I had when on the SSR's, I would explain it was pull my hair out, vomit, go to the ER at the very first dose, sick (classic SS symptoms), she still insisted. Even though my doctor gave her a list of the all the ones that had been tried with the same results, she insisted that I had to be on it. Did I mention Serotonin Syndrome is potentially fatal?

Then we have the methotrexate she would discontinue. It is helping and because of it I am able to move my hands, wrists and knees (as long as there isn't a storm or its not too cold). It is supposed to slow the progression of the degeneration of my spine. She looked at an x-ray done at the Cleveland Clinic and stated "there's nothing there, just some mild degeneration and arthritis". Excuse me did you just use the word DEGENERATION and MILD? Yeah, that's how the one in my neck started. The idea is for it to NOT DEGENRATE!!! Flexeril is absolutely necessary or my spine would not move AT ALL. Asthma? I've had it since I was born and it has improved since I have been on the methotrexate. I haven't had a single sinus infection, or asthmatic episode.This might indicate there was an underlying autoimmune response that triggered it and the methotrexate isdecreasing that. Also, a doctor at THE CLEVELAND CLINIC, had a RULE IN of seronegative Lupus! Get your act together people! Get on the same page.

I will say, I wasn't opposed to not using Robaxin and morphine. However, I just had major surgery 3 months ago so it is not unreasonable for me to still have some pain, and that's what these two medicines are for. Therefore, they will naturally be eliminated as I recover from the surgery. But, we still have to solve the mystery of the continuous auras that began when I started physical therapy, and the why when I have physical therapy I get migraines that rank a 10 out of 10 on the pain scale.

So all in all, my visit to the Clinic was a disappointment; a dis-appointment. I left feeling hopeless and I have been crying since last night, at every interval that I can be out of the boys' sight. Today I'm having a real tear fest and I'm so glad that I'm home alone so I can really let it out. Its very cathartic, and I have insight when I emerge. However, I can't help but feeling hurt at the doctor's attitude and lack of empathy for real and genuine pain that I, and no doubt others, feel when they come to seek help. I realize its a headache clinic but when there are multiple conditions that need to be treated simultaneously then a TRULY multidisciplinary treatment plan with these other factors in mind needs to be created. Having tunnel vision is not in the patient's best interest, and frankly, seems reckless.

So, as the song goes, and with my friend's statement in mind: I still haven't found what I'm looking for. I'm tired. Tired of doctors. Tired of explaining myself. Tired of hurting. Tired of crying. So for now, I just want to rest, be still and breathe.