Letter To Patient Advocacy Dept

I am a patient.

In the past 3 years several I have become quite sick, and have seven specialists at (Name of Hospital)

I consider myself extremely fortunate to be treated by 7 of the best doctors in the world.

I have been in Chronic Pain for 3 years. I have been house bound due to this pain. I often get severe flares of pain that leave me debilitated-sometimes unable to stand long enough to shower, other times the pain settles so deeply in my hands I am unable to type, write, operate my car, or open a bottle of water.

I have asked my Dr several times for suggestions on how to manage my pain. I have been told that since I have an atypical case I must wait because "time is the best diagnostician."
But I can't leave my house.
For 3 years.
I am told "I would like to make you feel better, but we don't know for sure the root cause of the problem"
But I can't stand up long enough to take a shower.
"I'm sorry for your pain, but there is nothing we can do right now."

At a follow up visit with a different Dr I explained that my daily baseline level of pain was about 5-6 on any given day. He asked me if my other Dr had tried Cymbalta, Lyrica, Savella, Gabapentin, and I told him no. He coached me on how to have a discussion about pain mgmt with my Dr mentioning these meds that are commonly used to treat pain such as mine.

Three days ago I had a severe flare. I lost use of my hands. I had pockets of fluid on the tops of my hands. I asked about Cymbalta, Lyrica, Savella, and Gabapentin, and was told that despite my pain she could not prescribe anything until a diagnosis could be confirmed. My blood work didn't match my symptoms. But my Schirmer's test did. The lesions on the surface of my eyes do support a diagnosis. Still, no medicine.

The Dr asked my to press on a pocket of fluid. I did. She asked if it made a dent and then puffed back up. It did. I was told that if I was having an Inflammatory problem that there would be no dent and her department treats Inflammatory pain. The dent meant I did not have inflammation.

I would have to wait 12 days for my Salivary Gland Biopsy, and if the result come back positive, then maybe I might get medicine that would help with my chronic pain.

This is the first time I have ever prayed to God to please let me have this very serious illness so that my Dr would prescribe medicine that may help this pain that has been ongoing for 3 years.

Please note, I did not ask for narcotics, I did not ask for opiates. I asked for Cymbalta, I asked for Lyrica, Savella...no controlled substances.

For 3 years I have managed this pain, I have been patiently house bound, and 3 days ago I had a severe flare, and I could not handle anymore pain. I begged my Dr for help and she would or could not. I don't understand why she could not, but I am not a Dr.

I felt backed into a corner. I could not tolerate any more pain and no one was helping me. I have lost faith in my Dr and feel that she has no intention of helping me manage my pain.

I resorted to self medicating. I had some leftover expired Lasix from a previous neurological condition and the RX Potassium needed to go with it. I started myself on the diuretic to help with the edema in my hands so I could use them again. I took a dose of the medicine the other Dr gave me for the side effects of my infusion treatment, and then, because I could not stand another moment in pain, I took half of my sleep med during the day (I am RX'd 2 tabs of my sleep pills per night. I took 1 during the day, and the other at night. I did NOT go over the allowed dosage.).

When I woke up, the edema had lessened considerably, and the med given for my infusion treatment was helping with my pain. I notified my prescribing Dr that I took 1 tab of the med for infusion treatments off label.

I am still self medicating with expired Lasix and Klor-con and the edema seems to be getting better daily. Without the pockets of fluid I can use my hands, but with pain. But I am glad it is less pain. This pain I can manage.

I will continue to self medicate as long as I need to or until I run out of Lasix. Three years is too long to let a patient be in chronic pain with severe flares. It is too long to be house bound. I want fresh air, and friends, and to exercise.

I write this because I feel like I have obeyed the Patient Responsibilities. I have been honest with my Dr's about my medical history and my Psych history, about all my medications, all my symptoms, when I have taken a med off label, and even let them know I am taking Lasix with no physician supervision. I follow my treatment plans and never miss an infusion or follow up, I see every sub-specialist recommended. I've been honest and patient and never rude to any Dr or demanded an attending physician.

I do not feel like "You have the right to expect evaluation and treatment of pain." listed in the patient bill of rights has been applied fairly to me.

I have lost faith in my Dr. It seems she doesn't care about the impact of being housebound for 3 years has on a person, or that excessive untreated pain has effected me socially, psychologically, physically. I am waiting for "Time, the best diagnostician" to figure me out. I don't know when Time will do that, but I can't wait for time anymore. So, I'm taking my pain mgmt into my own hands.

I am a patient, and this is my experience.

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