An Open Forum for Disibility and Invisibe Illness Awareness

Trust me, I’m a Doctor…..

November 28th…

We do trust our doctors, literally with our lives. They are learned, experienced and we happily trot along to see them, safe in the knowledge that they will cure our ills with a wave of their pen..

Until they mess up. And mess up. And mess up again… Slowly but surely I have lost my whole-of-life, total, blind-faith in the medical profession and instead am now full of mistrust, criticism and oft-times, disdain.

Having been ill now for roughly 8 years (discounting the CFS I’ve had since I was about 12, following a bout of Glandular Fever), and still being officially undiagnosed, I think I have the right to feel this way. Dont get me wrong, I LOVE the NHS.. having lived in Spain for 5 years, I appreciate our fantastic system and hard-working professionals. I threw my rose-tinted glasses away and stamped on them though, about a year ago.

I have had “weirdness” now for the past 8 years.. shaking, numb patches, dizziness and vision disturbances being the worst of my problems. I’ve had various tests and have always been sent away with “we don’t know what it is, maybe stress?” Last year I added pain in my hands and feet to my symptoms and again, consulted a doctor. This one did blood tests and found my inflammation levels to be high and so referred me to a Rheumatologist. I was living in Kent at the time and duly attended to be told that I showed classic symptoms of Rheumatoid Arthritis but they needed some more tests to be sure. Due to family illness, I moved to Bedfordshire at this time but returned to Kent to have full body bone-scans last November.

Results came in.. but as I had moved, I was discharged from my Rheumatologist in Kent and the test results were posted.. and never arrived. I remember phoning the Kent hospital at least 4 times, each time I was given the promise that the results would be re-sent to my GP, each time they weren’t. In the meantime, I managed to convince my GP that my foot pain had worsened and that I should see a Rheumatologist at my local hospital. At that time he started me on medication for Rheumatoid Arthritis as he too believed that was the cause of my problems.

I arrived at the hospital, full of hope that either the results from Kent would have arrived and show something up, or that I would be diagnosed/treated at last. The doctor was an ass. I don’t say that lightly. To be fair, he didn’t have my results but barely examined me, kept asking if he knew me as I looked so familiar and sent me on my way with a referral to Psychology as I obviously had “a woman of your age’s aches and pains”.

I was beside myself. I made it out of his office and to the stairs, where I sat and cried my heart out with frustration, humiliation and despair. You KNOW when there is something wrong with your body, I believe that 100%. The Psychology appointment letter arrived so I wrote to reject it, making a point of stating that I knew the “specialist” was wrong in his diagnosis. #mybad (it seems that we are not “allowed” to self-diagnose nor disagree with our doctors).

I digress.. shortly after, I received a letter from my GP asking me to make an appointment at which I was told they had finally received my files from Kent. Halelluliah.. I had Hallux Rigidus (arthritis) of my big, right toe. At last I had a name for the pain, even though its kinda hard to pronounce : )

In March I saw an orthopedic surgeon who told me I needed a Chilectomy (bone shave to remove the excess bone growth on my toe) and added me to his waiting list. I waited. I waited some more. I developed pain in my left toe and worsening pain in the whole of my right foot. I waited on.. In April I hurt my neck while putting a trampoline together, I called the emergency doctor out one night as it was so painful, hot and swollen. He gave me painkillers and sleeping pills.. ahhhhh… sleep…

In June, after much nagging, I was re-referred to the orthopedics department as I was so concerned about the deterioration in my right foot and felt that the bone shave would be a waste of time and money as the bone was growing so fast. I am certain that unless the cause of the problem was treated, the bone growth would continue. The consultant disagreed, didn’t take any new X-Rays and sent me off with a flea in his ear for wasting his time.

Since then my GP has performed acupuncture, signed me off work, taken me off the arthritis meds (as they were damaging my liver) and upped my painkillers several times. In August I was seen by a different specialist surgeon for my left foot, who agreed with me that I need a different operation on my right one and then proceeded to discharge me accidentally.

So here I am, months later and now barely able to walk. My neck is on fire as are my feet and I am in constant, severe pain. Tomorrow I will finally see a Rheumatologist about my neck, on Wednesday I have an appointment with the specialist foot surgeon, having been re-referred after breaking down in the GP’s office a month ago. Hope is in sight again..

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