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Monday, 19 September 2016

Seems Like An Old Story Now


By now I have had arthritis for more than half of my life, so it's hard to even remember feeling normal and healthy.

I have rheumatoid arthritis (RA). It’s an autoimmune disease that does not affect any of my relatives, including my 50 first cousins.


50
When my kids were pre-teens I started to have pain and swelling in my wrists, fingers and feet. I was suddenly so tired after work that I would just lie down and feel unable to get up again, even for dinner. 

I was losing weight too but I thought that was because I switched from Pepsi to Diet Coke. 

My GP doctor seemed to think the symptoms were all in my head. When I said I was extremely tired he said "You're a busy active Mom."  When I told him about my foot pain he said it was because I was on my feet a lot. And when I had an oval cyst on the back of my hand he said they used to call them Bible Thumpers, because if you whacked them with the Family Bible they would go away.

My doctor made me feel that I was exaggerating and incompetent and I felt powerless to change the situation. When I left his office I would feel I should try harder but that brief dismissal did not help me at all. I knew there was a problem - sometimes I actually could not stand up first thing in the morning and had to crawl into the bathroom. 

The last time I saw him he told me to take 12 aspirin a day and come back in 3 months. That did not work at all and I still have ringing in my ears caused by all those aspirin.


Walking Gallery Jacket by Regina Holliday reflects this era

The only way I could think of to deal with the problem was to change doctors. Sadly the 2nd Dr. was no help either. The 3rd was actually a foot surgeon who got the right answer less than 5 minutes after I saw him in his clinic.

During that 2 years it took to be diagnosed I developed permanent joint damage in my hands and feet (also jaw and neck as I found out many years later). One seemingly trivial result was that to this day I wear ugly shoes because it’s better than limping. I have had 10 surgeries to maintain my functional abilities but have a weak grip, can’t garden or vacuum and hate to stand a lot even at parties.

I have taken immune suppressant drugs and NSAIDS for the past 30 years and managed to work up until I retired, though I did need to change my job for one that had less physical stress.

That happened in the 80’s so even when I had a name for my health problem all I knew was what I learned from my doctor. This was before home computers were common and with a job and 2 kids I did not have the time or energy to do all I needed to do, let alone go to the library to learn more.

Things are different now. Last week googled my original symptoms “pain in hands and feet, fatigue, swollen joints" and found a million results in total with 7 out of the top 10 links mentioning RA.

Imagine if I had access to that in the 1980s – I might have known very quickly what was wrong and insisted on seeing a specialist. With knowledge we have power, and it is great to see more and more patients becoming very knowledgeable about their own health.

... to be continued in the next post... Active vs Reactive Patients

This post is part of RA Blog Week at the end of Arthritis Awareness Month. To see more blogs on this topic click here





8 comments:

  1. I love your post for day 1. Thank you so much for participating in RABlog week. Yes things are different. I am a short timer, 16 years, I owe all of you in the time of gold shots and wrist bands a terrific thank you. You made today and tomorrow possible.

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    1. Thanks Rick, I panicked last week and started a week early. What a shock when I looked for everyone else's post and saw nothing. You're right on with the gold shots. My Dr used to say I was getting more valuable with every shot.

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  2. Great post Annette, even though I almost cried when I read how long it took you to get dxn and how dismissive your first doctor was. Knowledge really is power and we are very blessed to have so much of it at our fingertips these days. 24 yrs for me now.

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    1. The years go by so fast, and we have all had to change ur lives to be able to live the lives we craft because it is a necessity. I have cultivated the ability to make the bad times fade faster than the good ones. : )

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  3. Wow! I can't even imagine all the feelings you must have had. I think so many of us worry that we are imagining the symptoms and then when your PCP validates that, oh my! Thanks for sharing. I'm looking forward to tomorrow.

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    1. It's hard to stick to our guns when the people we turn to for help think we are exaggerating. There are no doctors who I visit as a patient from choice - it's all necessary.

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  4. I celebrate 50 years with it this year. I was 40 when I got the first symptoms and it took five years to get a diagnosis. My mother kept telling the doctors that she thought I had JA. They recommended she see a psychiatrist. Different countries, different decades, but much the same story. Why is it that so many doctors blame our active imaginations instead of just saying “I don’t know, but I’ll find someone who does”? My current GP says that if my body does something puzzling and she doesn’t know the answer. I’m lucky to have found her.

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  5. That must have been really hard for your mother. It's a shame that this experience was so common. I hope it is better now, but online in groups, I still hear that this happens. Thanks for the comment

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