This blog has always been about my husband's stroke in April 2012 and how we have coped as a couple and a family since that occurred. I have decided that it will now become more expanded and look at the bigger picture of good/bad health and how it affects our lives, particularly how the traditional medical profession has failed us as human beings.
I am not picking on any one doctor, but I think increasing red tape and inability to listen, just LISTEN to patients has created a medical nightmare. We are now facing a health crisis in our nation, not just the inability to pay, but the inability to get a proper diagnosis and treatment.
We are oftentimes at the mercy of drug companies: What research they choose to fund, what drugs they decide to push and advertise and how things are marketed. Alternative treatments are scoffed at by the mainstream medical profession at large and yet, even when it is a disease or illness that is easily found on the internet(!) a physician with their 15 minutes may miss the aha! moment sending the patient on a roller coaster ride of unnecessary pain and suffering because of a misdiagnosis or a non-diagnosis.
I have always heard of the word "Orphan Disease" thinking that it meant a disorder that is so unusual and rare that it wasn't worth putting money into the research as it did not affect large groups of people. I was partly right:
Definition
of Orphan disease
Orphan disease: A disease that has not been adopted by the pharmaceutical
industry because it provides little financial incentive for the private sector
to make and market new medications to treat or prevent it. An orphan disease
may be a rare disease (according to US criteria, a disease that affects fewer than
200,000 people) or a common disease that has been ignored (such as tuberculosis,
cholera,
typhoid, and malaria)
because it is far more prevalent in developing countries than in the developed
world.
So what this means is this: If it doesn't affect Americans, then it isn't worth it. Wow. I was stunned when I read that.
I recently became so ill that it was hard to even walk. The exhaustion level and other symptoms manifested were so painful that I just often cried and slept. These are the doctors I saw (or didn't):
1)My symptoms started flaring up in April. I made an appointment to see my former Rheumatologist: Appointment scheduled for JUNE.
2) When I saw her in June, I had filled out numerous questionnaires about my symptoms. She rolled her eyes several times at me and said "These symptoms are so diffuse that they are meaningless" and then after rolling her eyes at me several more times and looking at my husband as if to say "Your wife is loony" she said "I suppose I could take some blood." I just said "Don't bother." And I gathered up my things and left. This was not starting out well. This was a doctor that I had trusted implicitly.
Back in March 2003, she diagnosed me with a weird type of arthritis (an auto-immune type, not the osteo type that hits when your joints wear out). At that time I had been to 11 doctors. My hands were gnarled and curled up, I was unable to straighten them or use them to write. Each doctor said the same thing: It is tendonitis. I knew that was wrong. (My internet research led me to her when I thought it was scleroderma) You don't just wake up one morning and have your hands frozen into place. I was lucky to find her. I got treatment, but after several years of poisonous drugs flooding my system, I made the decision to stop drugs, change my diet, exercise, and do acupuncture.
Laughingly, my current situation turns out to be related to that first diagnosis. Why she didn't listen to me and treated me so poorly in June is mind-boggling. So I got worse and worse with more horrible symptoms.
Stay tuned for more on this continuing saga about what it took to get a diagnosis.
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