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Friday, 31 August 2012

It Used To Be Different

I have had RA for 30 years now.  It took me a year and a half to get a diagnosis and that was the worst period in my life.

First and worst was the sore feet.  At the time I worked in a bank and assumed that being on my feet all day was the problem - that and having 2 very active boys at home.  My feet got more and more sore as time passed.  I felt like the Little Mermaid when I got out of bed in the morning - as though I were walking on knives like she did to become human. When the symptoms were at their worst I crawled to the bathroom.

                                                    From NRAS.org.uk

At the same time my hands and wrists were sore, hot and swollen.  Eventually I wore elastic bandages (like you use for sprained ankle) on my wrists at night in the hope of some easing of the pain.  And I have talked before about the "miracle" weight loss and total exhaustion. A systemic illness like RA causes weight loss - how could I have thought it was the switch to Diet Coke?

When you feel that bad it is hard to think of solutions and harder yet to act on them. I tried 2 different doctors who were unable to help.  Finally, at the end of my rope, I went to the foot clinic at my local hospital.  The orthopedic surgeon on duty had residents helping him at the clinic.  They came first and had a variety of theories but when the Dr came for a look he listened and told them this: "Send the lady for a blood test."

And there it was.  The answer to the puzzle and a quick referral to a rheumatologist.  The new specialist was on vacation so the anxiety level rose but eventually I saw him.  He pulled out the famous treatment pyramid and explained that since I had 25 active joints and a very high ESR as he could see from the blood test we would start near the top with an aggressive treatment (for that time).  That meant gold injections.

And here is a difference between then and now.  Rheumatology actually had hospital beds allocated to it and I was admitted to the hospital for 3 or 4 days for blood tests and monitoring of the treatment.  

The centerpiece of this stay though was the education component.  I talked to the pharmacist and the nutritionist and was fully exposed to the occupational therapy and physiotherapy options available. 

I was given exercises for hands and body by the physiotherapist and occupational therapist and learned joint preservation techniques. We tried out a paraffin wax bath for the hands. It feels wonderful for a while after you have it but unfortunately the effects don't last. 


Model of foot sitting on orthotics

I was given a life saving prescription for orthotics and ideas for utensils to make cooking easier. And  how could I forget my trusty splints - they have been invaluable to me for all these years.

Resting splint to wear at night

This was all a big help in trying to restructure my life after I went home again.  It was reassuring to have a plan - still very depressing of course - but so necessary in the time before internet.  

It felt like there was a ready made team that would help me and that helped to make me feel less isolated and unsupported.

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