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.

Cooking with Knives & Magnets

                                                                      Swedish Knife

A Swedish women's group in Toronto donated some of these right angle knives to The Arthritis Society years ago and I am so happy that they did. It was the first product specifically adapted for arthritis that I acquired. I received the one on the right. The two points at the tip are handy for using to pick up small morsels as you cook but I dropped it on the floor and the point broke.  I bought a new one since the fork end is so handy.

These are so good for weak and painful hands with problems like mine.  Of all the "devices" I have ever used specifically for RA I have had the most use from this knife. It makes cutting much easier when you can use the full strength of your arm rather than only your hand.  Just don't drop it on the floor :)

I never bought one online though I know it is possible. Mine have come from local specialty stores. 

Do you like the magnets on the wall?  They save the trouble of opening heavy drawers so often.  My wonderful husband thought of that.

And what goes naturally with a knife? - the cutting board.  This is more economical than the knife. It's a dollar store find.  There's a cow on it because it is a set of 4 - you use a different one for each type of meat if you keep a kosher kitchen.  The one for chicken wore out.  
The board I used to use weighed about 2 pounds and over time the extra weight has a bad effect on your hand joints.

Cutting Board

My Favorite Drinking Glasses for Klutzes & RA hands

Kolsch Glass

Curvy Glass

It's time for a celebration.  I can add pictures!! I won't do the ring splint post today because I think my hands are a little scary to people with a new diagnosis.  You'll see them eventually but they are the result of bad treatment 30 years ago.  Outcomes in Rheumatoid Arthritis have improved a lot since my diagnosis!

The Kolsch glass you see in the top picture is so easy for me to hold now that it is harder to grasp things.  They look good and can be found at Lee Valley Tools (www.leevalley.com) I hear that even surgeons buy tools there.  They were around $15 for a dozen and I have presented them to friends with RA who also appreciated them.  I am sure you can easily find the glasses - they are meant for beer

The curvy glasses are so cool but they were a garage sale find so I can't direct you to a store where they are available.  They are a bit heavy but can be grabbed by the top with the whole hand since they have that ridge.  Regular glasses just slip out of my hands

I have a few more ideas that make life easier which I have not seen, but most have already been covered well by Auntie Stress in her great Rheumful of Tips blog.  I have already read all 326 hints she has so far.

Note: Since I wrote this Auntie Stress has stopped at 500 tips. What an accomplishment!

Strength and Power with RA

It's been 30 years since I was diagnosed with RA.  The onset was classic in its symptoms but my GP at the time thought all I needed was aspirin.  He said take 12 a day and come back in 3-4 months.  I thought the weight loss that was occurring was due to switching from Pepsi to Diet Coke, and the sore feet were from standing at work.

The result after diagnosis was a long battle with illness and no exercise.  How could anyone expect me to be active?  It was all I could do to keep going. 

I saw a physiotherapist from The Arthritis Society sometimes and she recommended one exercise that stuck with me.  That is the exercise where you act as though someone is trying to stick a knife in your bellybutton.  You draw it in your muscles and tense them while you hold them tight for as long as possible and if you can, try to pull the muscles up toward your chin. 

Well anyone can do that lying in bed so I did it for a few months regularly.  Sometime later I was enrolled in a clinical trial which required frequent visits and doctor exams.  One day I was examined by a new rheumatologist.  In feeling my abs she said I had good muscle tone!!

That was a turning point - it amazed me that so little work could have such an appreciable effect.  The trial did not work out - but I was enthusiastic about exercise all of a sudden and started to work on Pilates in a modified form called Arthro-Pilates which is taught by a Lori Weisbrod. She has inflammatory arthritis herself. Her site is http://www.arthro-pilates.com/  It felt a lot safer to be taking lessons from a person who knew my limitations and is an amazing example.

Lori Weisbrod

Now I have more muscle and strength and maybe I could go farther. After all if a 95 year old can be a yoga master and if someone who starts at age 56 can become a sculpted bodybuilder in her 70s I am sure I can develop more strength and power too - I'm not even a senior yet.