I have not posted on my “Roses Are Read” site in a long time due to the horrific pain that I’m in. So, I thought I’d write a paragraph or two each day which is also like me keeping a journal of my progress.
Almost a year ago, I was getting very discouraged with my doctor. I was feeling neglected. My pain was worsening with the new diagnosis of Rheumatoid Arthritis/Scleroderma. Your body simply tells you something is very wrong! It all started with swollen hands and swollen feet at first.
With constant complaining for over 10 months, my doctor finally sent me to a Rheumatologist, who sent me for countless blood work testing, breathing tests, Scans, electrocardiograms, etc. And at my first visit with the Specialist, he gave me cortisone shots on both shoulders. The very next day, I felt like a new person. However, being mobile and pain free again was short lived and depression was setting in. I have a nurse friend who warned me that the cortisone shots were only a temporary fix. She was right. She also felt that I couldn't possibly have R/A but the numerous blood tests clearly showed "Rheumatoid" and "Scleroderma".
Months went by with countless trips to the Rheumatologist’s office, who the bad mannered doctor never stepped in beyond the threshold of the doorway. He just placed his tablet against the wall and wrote with his stylus pen. My visits were less than 7 minutes each time and my wallet was hurting from all the copayments. He would just look at my swollen hands and then ask me how my breathing was. That was it. Oh, and schedule another appointment for me a week later. Well, I decided that was my last appointment with the Rheumatologist! If he was so concerned about my breathing, he never put the stethoscope to my chest and back! duh!
This time, I vented out and emailed my Primary Care doctor’s office manager a very long letter expressing my feelings and that I needed help ASAP. I was in tears! Frustrated, extreme pain and no one was helping me!
Two days later, I received a call from my Primary Care doctor and he told me that he didn’t like the way my Rheumatologist was treating me with four months of Medrol, as I was vomiting and still in terrible pain. My doctor said to me, I will be back under his care and no longer with the Rheumatologist who he knew I disliked because of his bad manners.
My doctor then presented to me that he would like to try an antibiotic protocol. I’m grateful that he wasn’t afraid to think outside the box. The Minocycline Therapy is a long road to take but I was willing to do anything to relieve me from the pain but not without me doing some research on my own first and was so lucky to find the website “The Road Back Foundation”. This Foundation is located in Cambridge, MA. That alone made me feel good. Boston people are smart people. Boston has the best medical doctors and hospitals. I know this first hand as I was born there.
My doctor did warn me that this drug could cause the “Herxheimer effect” which is described as a reaction to treatment in which the symptoms of the disease get worse at the start of therapy, a paradoxical sign that the infectious source of a disease is under attack. Well, that held true after taking the first round of pills. The pain got worse.
It was as though I could actually feel what was happening in my body that the cause of the arthritis was being attacked and destroyed and carried out of my system, and it is a blessing even though still in pain! It helps alot to know in advance what to expect instead of going into it blindfolded.
As a rule, patients have little medical knowledge but we often have a particular understanding of our own disease. I have acquired most of my information from extensive reading and from conversations with others who suffer from the same affliction.
Shame on you if you do not become your own advocate of your own body! No one cares more than you and don’t just accept a written prescription from your doctor without asking lots of questions. And, always ask for copies of your test results and CDs of all the MRI, CTscans, Xrays, etc.
I keep a daily journal of how the medication is affecting me.
Without this community of people and my kind and caring friends and family, I would not have been able to go forward, as the pain is so intense.
Depression is a real part of the pathology as the pain and crippling. Arthritics have a hard time fighting back because they don’t feel they really deserve much better. That attitude may be the one contagious part of the disease one doctor wrote in a study on R/A.
I do not know what my future will bring because of having Rheumatoid Arthritis/Scleroderma as part of my medical history, but I do know that right now my mind, body and soul is going to get healthy and stronger again because I refused to accept the hopeless future that was presented to me.
This very old antibiotic protocol is something every person suffering with R/A should look into. The new drugs and the pharmaceuticals draining people of their savings is like the goose that lays that kind of golden annuity!
I would like to reach out to anyone with Rheumatoid Arthritis/Scleroderma to research, Dr. Thomas Brown. His studies on R/A was the big breakthrough in a book he wrote and was published in 1995.
Or just look up The Road Back Foundation. You will find all the information you need in that site. Good Luck and my prayers go out to you as I also need your prayers in return as this will be a very long rollercoaster ride.