So, the orthopod was a “hip doctor only“ stress on the only — over and over. She was very nice, understanding and thorough. She actually had me do more than “push your leg against my hand as hard as you can, harder, harder, harder” …These tests are typically useless. She had me lie on the table and she guided my leg through every single range of motion possible. She was testing to see if the abnormalities on my hip x-ray could be causing my pain (although they are typical for someone of my advanced age, now 45). Her answer was… “no it is not you hip it is your back.” Back to the back. Ugh! So far all the specialist swear it is not my back.

OK, not a bad thing if it’s not my hip and I don’t need a hip replacement. How ’bout my SI joint x-ray… You know while I’m here. She’s only a hip doctor (geez) but she would look. Seriously, why has she not looked at it first? The SI joint does touch the hip. It is part of the hip region. She did point out there is arthritis in my SI joints. This is not good but nothing she will address because it’s not the hip. If she says “hip doctor” one more time…. Thing is, she saw how much pain I was in. She actually use hands on techniques – you know, touching the patient and said you have pain sensitivities everywhere and declared it’s my back. “It’s only three weeks until your pain management appointment” … but it’s zoom – how does that help. I just need a Toradol injection. Can we just reduce some of the information please.

NOPE.

The pain became so intolerable that I called the PCP that I didn’t want in the first place… Let’s backtrack. I met him in late January early February. With my husband present I said all PCPs are afraid of me – they don’t know how to help. He laughed that off and said it was ridiculous. I said “will you be my doctor?” His answer was “yes of course.” My husband was there the whole time. We thought he was good. He asked for my medical records. I have them all so they asked that I put them on a thumb drive and drop them off.

…I did, but there was a catch. I was having terrible rib spasms that day. I asked to talk to the nurse. The front desk girl said he actually has an opening in 15 minutes and booked me. The nurse comes out front and tells me she spoke to the doctor, who has no time for me because he’s backed up and I should not have been offered that appointment, but my symptoms concerned him very much and I should go to the ER and ask for a scan, he would be calling ahead. What now? Why would I go to the ER? There are people in serious need there and this is not a new pain but one no one will address. The worst place for chronic pain person with a rare disease is the ER. My thought was imagine if the doctor saw the ribs in spasm while it was happening. Commonsense is lost on too many doctors. In Rochester, NY there is an extra short supply. Memorial Sloan Kettering cancer center was doing ultrasound guided nerve blocks while making sure I knew it was temoprary. 

The endocrinologist, neurosurgeon and hip specialist have been sending him my records since February. So – fast forward to two weeks ago. I called the PCP. The first day I couldn’t get through. The next day I was told the Wi-Fi was out so the phones did not work. They said that the doctor would call me at the end of the day. On Wednesday I took my 94-year-old grandmother to the doctors. After folding and lifting and getting her walker in the car and out four times, without her seeing me wince, or those little cries of pain that escaped me, I dropped her off at home and went directly to urgent care. I simply filled out hip pain, muscle spasms and when the nurse came in I asked for a Toradol shot. I told her what it happened, that no one will give me one (not the hp dr)… Actually the PCP did on the day I met him. Remember that fact. So I was given my Toradol shot and I ketorolac prescription. They said you only have one week before you meet with the pain management specialist. Hang in there.

At closing time a young office worker called from the PCPs office. She told me this was not for this doctor but for my PCP – what…? He is my PCP. No, he is not she replied. “That was just a consultation.“ Excuse me? He said yes, asking for more information, my specialists have been sending him my updates for months… Why have I not been told?! Umm ummm… hey sweetie let me help you out… I said “so you’re telling me he is declining to be my doctor.” “Yes“ and why was I not notified? Crickets. Whatever.

If Rochester didn’t have such a… i’m going with, pass the buck, billable event, administration BS, for primary care physicians, I never would’ve met with this man. This is why I have not had a primary care physician for 15 years. I have no need.

25 years of medical records… actually I don’t start them until 2007 with pituitary surgery – no one wants to start there. Lazy? Cowards? Intimidated?… Over their head? It’s all of the above. Arrogant and Ignorant and they like to stay that way.

The nurse practitioner at urgent care said only a week until pain management. Two hours before the zoom visit I received a call. He was called away and my appointment was canceled. They rescheduled for Monday, April 26 at 3:30. I am not impressed. I am disheartened but I hang on. Monday… I am suppose to log in 15 min early. I did. The phone range. He is running late – 30 – 45min. Of course. He does call me…. no longer in the office, coat on, outside standing against a brick building. He said he heard a lot about me from the neurosurgeon, how can he help? In the end, he said the toradol will not help my systemic inflammation. He cannot help me until doing more research on me and not putting me threw anything I’ve already tried. I’ve been through too much. His staff will be in touch. It’s Wednesday and they have not followed through with my previous therapies. I will send them myself.

It has been eight months since trying to get to this doctor. Eight months!! Not that North Carolina in the Research Triangle Area nor NYC have been any help. Dismissal after dismissal.

I’m working on all the alternative ways to get what I need. It is a long, expensive process but it’s better than this. 

Friday, April 23rd I went back for my second fascial stretching. It’s a form of Rolfing without the trademark of Rolfing. She was very helpful but she’s also booked. So once a month doesn’t cut it for progressing to a better state of being but it helps with the acute pain. So I will take it. …is what I wrote when I first drafted this post. It is good for my legs but SI joint arthritis is tricky she said. She uses a vibration gun. It caused so much more pain. Rolfing is a million times better and her personality is that of an old school, mean but caring teacher. I do not care for her personality or therapists who do not want more information but tell you to stop.

The system is not flawed or broken. It is rigged. Administration over patients, every time. For this I am very angry. I need answers. As in, bloodwork, advanced scans… A knowledgeable doctor… seems too much to ask.

I’m working on it.

I will do another post on the positive things that I can do and have been doing.

In the meantime I hold on to hope and faith.

I get outside as often as possible and

laugh as many times a day as I can.

I write about the truth, that is my life. I know I am not the only one. These posts are pretty negative because people don’t do the right thing…but do not miss that there is always hope. I will always do the right thing. Including call people out and cut people out. But that doesn’t mean I do not love my life, my husband… our joy, faith and love. Share your story. It may heal someone. You never know who you are reaching. …this selfie was taken on my birthday, April 21, 2021. Sandbar Park, Lake Ontario. As my uncle put it… I’m halfway to 90. But at 45, I have crossed a new line. 25 years of chronic illness.