Late August 2020, we decided enough with this nonsense, we need more room, we need to be back to two bathrooms, a deck, green space – a grill!
But before I can move anywhere I have to search for doctors. It can be limiting. It can be frustrating for my husband who could go anywhere – get away from the nonsense — live off the grid. Sounds kind of good but it’s not my reality.
I had been blocked from all NYC hospital care for a year… Because of the nonsense. Not everything stops for a virus. My illness doesn’t stop. What about my life and everybody else like me. So hypocritical. Anyway, my MSK Pain Management Specialist thought I should stop looking for answers in New York City. I’ve been everywhere. He thought I should go to the Mayo Clinic in Rochester, Minnesota. I chose Rochester, New York.
We had gone to look at a place in Connecticut – we could still get to New York City, pay lower rent, more bathrooms, However, it was a huge complex, too many people and too many chemical cleaners. Chemical sensitivity is a serious issue — smells – NOPE. I was already hauling all of our laundry to a friends weekly because new tenants in the other 8 apartments used the most horrific, chemical infused, laundry detergent. In 2 years we had to donate more than half of our wardrobes. I tried EVERYTHING. That cancer chemical in the perfume-y crap was giving me migraines, nervous twitches and non-stop tears. You might not feel what I feel but it’s not good for healthy people either.
So, we got in the car and decided to head an hour north to see what we could find. Divine intervention… I said to Paul “how ’bout Rochester.” He, without hesitation said yes and then he said “so can we go home now” and we did and started to plan for an October move.
My 94-year-old Nana, 91-year-old aunt and cousins are all still in Rochester. I haven’t lived here since I went to RIT. But I’ve been coming here all my life for family. So what about doctors… University of Rochester, known as UR, shows up in medical research studies — this I knew. First up, pituitary specialist. This is a must. ✔️
Pain management felt like I hit the jackpot. I called the palliative care department too. I could transfer all of my ketamine treatments too… I felt relief. I felt confident. We moved forward with our plans.
Pain management and palliative care have been an EPIC FAIL!! The “gate keepers“ who weed out patients that don’t need “the top doc“ said that they wanted more information on me. What that was I will never know. I am only the patient after all. I’ve had flat out lies added to my “legal“ health record. I’ve been told there is nothing left for me – no pills since I’ve taken them all. They only know this, because a few years ago, I started printing out all the meds I’ve been prescribed by my neurologist of almost 15 years. Treating all different types of pain and not just with medication. But I have found that most doctors just want to prescribe a pill and I am done with pills. The neurologist’s list I provide has over 100 medications. That’s one doctor.
Then in February I went to meet the pituitary endocrinologist. Love her! Due diligence paid off here but they also put me with a neurosurgeon. I haven’t seen a neurosurgeon since 2007 when I had transphenoidal pituitary surgery. I was new here in Rochester so they see you together. This was a huge win – Not because of my tumor, but because I brought up pain. He made me come back two weeks later to see him on a general surgery clinic day. “Not a pituitary clinic day“… Ridiculous, but whatever. He said, you need to see this doctor, but you already brought him up and I will bypass the “gate keepers“ and talk to him directly. He did and he’d be happy to see me.
A lot of ROC Doctors need to hear “I told you so.” I research and know what I need. Be a strong, educated patient. They love you or they hate you. But the hate is very strong… you have to keep going. I will finally have the chance to see the pain neurologist with a zoom visit (huge eye-roll) on April 22. It will be eight months before I even have a chance to receive a steroid injection, even though my pain is crippling.
So… I had a good conversation with the pituitary endocrinologist and we are trying a few things. So after some more lab work this brought me back a month later – my pain continuing to get worse. The Neurosurgeon was present to go over my MRI. All is well, huge space is empty where the tumor was – OK. But Sir I am in SO MUCH PAIN!! So much pain that lying down is the most excruciating – I still don’t understand how or why but rest is hard to come by when you cannot get comfortable. One morning it was so bad, I was laying there – getting up is nearly impossible – I came downstairs and started researching. “Acromegaly and hip replacements” there is a lot of information of its existence but no research studies. How is it that they know it exists, it’s a problem but the pub med article say no studies? Oh right, a pill can’t fix that so there’s no money for the study. I pulled up the article, turn my phone around and showed both acro specialists. The look that crossed their faces seemed to be knowing but no answers. It is real. It is debilitating. No one is looking. No one cares.
The neurosurgeon asked which side is worse. I answered the right. He put in a right hip and SI joint x-ray. I could go down a block after my appointment for the x-rays. So I did. It shows abnormalities. Shocker.
Paul and I disagree on which means more – but I am not a doctor and no real research is available to me. I hear nothing from the surgeon, I wait a day and a half and send an email through the patient portal to, yet again, the gate keepers. I simply say, I’ve had x-rays. I see things I don’t understand. I am in excruciating pain. Please help! She responded within hours that the neurosurgeon wants me to see an Orthopedic Specialist. This was last Friday. They called on Saturday! But which doctor was up in the air so we had to wait to ask someone. Tomorrow I go… I am praying there is treatment – even if it’s surgery.
So, to the three doctors who did nothing… Told me all I needed was a PCP and mental therapy… there’s a special place waiting for you. These “doctors” don’t deserve medical licenses. Their god is the administration and much harm is done. I am their real boss.
Why couldn’t the first “Doctor“ do his due diligence? Why would he say my medical history was irrelevant – of course it is not! Why would he say I referred myself to palliative care – I did not. Memorial Sloan Kettering cancer center in New York City did. Why would he say I was fine. I could bend over and touch my toes and walk in a basically straight line. Sure the pain isn’t in that bend, nor is four steps in a small room. He does not understand Small Fiber Neuropathy either. Where is his due diligence?
So the whole Rochester medical system should be ashamed and admonished.
I don’t need a primary care physician. It is why I have not had one for 15 years. I have to fire them. They do nothing except cost me money. I need specialists. They thought I was being arrogant. I DO know better than them. And in the end how did I get to see the specialist I needed… by seeing a neurosurgeon. This is ridiculous and patients need to be given more credit and more control over who they see, how, why and when. Enough with this administrative bs. They don’t know Acromegaly. I can choose my own doctors because I know myself best. This needs to change before I am wheelchair-bound. It doesn’t have to be this way.
So I will go tomorrow to the orthopedic specialist with hope in my heart.
I will do the zoom video with the doctor I wanted to see for pain management since before I moved and I will have hope.
I do not give up,
I do not give in.
This is my life.