Rheumatoid Arthritis: One Disease, Two Generations

When I was 9 or 10 years old my mother started complaining that her thumb on her right hand was bothering her.  She couldn’t remember hitting or injuring it in any way.  I clearly remember her telling a neighbor that it felt like she had bruised her thumb.  It wasn’t even something that she considered going to the doctor about.  It just seemed odd.  About 2 months later she woke up in the morning and could not get out of bed.  I remember how scared I felt as my mother cried out in pain while my father lifted her from the bed to carry her to the car and take her to the hospital.  I had never seen my father carry my mother before.  At that point my sisters and I knew that there was something seriously wrong.

My parents spent the better part of the day and night at the hospital and when they came home my father helped my mother to bed and told us that the doctors thought that my mother had rheumatoid arthritis.  I had no idea what that mean or how it would change our lives.  I just wanted my mom to stop hurting and just be Mom again.  

I watched this disease change my mother.  In the 1970′s there was not a lot of treatment options for rheumatoid arthritis.  The doctors mostly gave my mother enormous amounts of aspirin to help with the symptoms.  She had these bizzare scaffolding like contraptions that she wore on her fingers that used rubber bands to keep the fingers in place at night.  The objective was  to keep the joints from contracting and to try to hold off the deforming effect of the disease.  It did not work.  Before that they splinted her fingers constantly in a failed attempt at keeping the joint in place.  Within the first year my mothers fingers were severely deformed and she spent the majority of her time in bed. (at least it seemed  so to a 10 year old kid)  

We eventually ended up moving to another state because my parents heard of a rheumatologist that had a new treatment option that might be able to help my mother.  By the time we moved to Connecticut my mother had been dealing with the effects of this disease for 2 years and the most encouraging treatment the doctors were offering was aspirin.

The move to Connecticut brought new hope for all of us.  During this time I have pictures of my mother either in bed or on the couch laying down.  That is what I remember of my mother.  She was always laying down.  The Connecticut rheumatologist recommended that my mother start gold injections.  She and my father joked for a long time that she was worth her weight in gold.  The new medication was like a miracle and slowly but surely my mother started to emerge again.  I had been a long journey and finally she had found a doctor that knew how to treat the disease.

Over the past 30+ years I have witnessed the circle of rheumatoid arthritis.  There were times when it almost seemed like there was no disease at all.  My mother looked and acted as though there was nothing wrong with her.  And then slowly creeping back into the forefront the disease would emerge again and a new treatment option was added or changed to help her move again.  The cycle of remission and flare and new treatment and remission and then flare again and new additional treatment has gone on since.   When I received my diagnosis 8 years ago I had a little insight into what I was in for.  

Over the past eight years I have  had the opportunity to look back on how my mother dealt with this disease and I have a new understanding and appreciation of what she went through.  I am not judging how she handled her pain and complications from this disease  we all do what we can to get through. I  have chosen to deal what is in front of me in a different way than my mother.  It is really important to me to try to keep a positive attitude dispite the pain and the limitations.  I will not allow the disease to take that from me.  Some days  it is harder than others to look at the world and find something good, especially when I am in pain.  It is truly important to me that I try. My attitude and outlook is something that I can control even though having  the disease is something I cannot.

Tags: arthritis, aspirin, disease, RA, rheumatoid, rheumatologist

This entry was posted on Monday, May 18th, 2009 at 9:02 pm and is filed under Lesson Learned. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.