In the news this week!

I read a couple articles this week ticked me off. 

The first one was an article claiming most RA patients die 10 years earlier of premature heart disease.  When I was first diagnosed and researched RA, way back in 1984, it was believed our life expectancy was shortened by 5 years.  So what happened?  Where has the extra 5 years gone?

Personally, I don’t believe this but if it is true, it might be a blessing in disguise.  I’m 50 years old this year and with the progression of this disease I’m not so sure I want to be here at 70 or 75. I’m not trying to be negative or depressing. But with all the help I need now to get through the day, I can only imagine what I will be like at that age. I would have to be put into a home because I doubt my husband (who’s health also isn’t good) could look after me at that stage and I don’t want to live in a senior’s home.

This article states, "The majority of the delay is on the part of the patient." Apparently we wait too long to go to the doctor for a diagnosis because we think it is the normal aches and pains of growing older. Most with RA first notice symptoms in our mid 20’s to mid 30’s. We do not think the pain we are suffering with is because we are getting older. From what I read on our blogs a lot of those with RA have a problem with their doctors not taking them seriously or we can’t be given the new medication which is showing success because our medical system insists we start at the bottom and work our way up to the more effective ones or they are simply too expensive without an extended medical plan.

I do agree with both articles that state the sooner we are diagnosed and given aggressive treatment the better. We feel rather invincible in our mid 20’s. but it needs to made very clear that we need to eat a healthy diet, do low impact exercises every day (the bad days do only Range of Motion), see an occupational therapist to find out what we should do differently to protect our joints and trust our instincts when it comes to our medical treatment. If we don’t feel we are receiving the right effective treatment we should talk to our doctor and if he won’t listen, find another one who will!

Life is too short not to look after ourselves properly and according to research it is getting shorter. Oh, and don’t believe everything you read.

My RA Story - Part 2

Part 2

Over the next 15 plus years, I was put on a variety of medications – Advil, Methotrexate , Celebrex, Imuran, Plaquenil, and so on. The only medication that helped was Prednisone and I was on that for years. I have gone to physiotherapy, often coming out worse than when I went in. Acupuncture didn’t help at all and the pain was excruciation – I should have clued in when the Acupuncturist pulled out his textbook to figure out where the needles should go. The only non-medicinal therapy I found that really did help was Reflexology.

Adoption

We were still waiting for a child to adopt, a brother or sister for Lisa, when we had a heart to heart with our social worker. Apparently, she had blackballed us. She had a grandmother with RA and did not feel I could be a good parent. By now, I was using a walker and my hands were beginning to deform. Still, how could she make a decision like that - saying I could not be a good parent!  Just because I was not able to be physically active with my children, it would not make me a bad parent. Most of parenting comes from the heart and I knew I had room for more children in my heart. The only way around this blockage was to move to a different side of town, which put us under a different district and a new social worker. We adopted our 2 sons, Dez & Ron (3 & 2 years old) in 1996, nine months later. Side note – I have found that since I do not have the mobility most moms have, my hearing and ‘mom intuition’ have both increased.

Hip Joint Surgery

In 1999, my right hip pain was unbearable. The Morphine I was taking barely touched the pain. I had x-rays done and it was decided that I needed my hip replaced. If you need a hip joint replacement surgery, don’t put it off. Ankle surgery, well …. I will get into that a little later. The night after my hip surgery, I did not need Morphine or any other pain medication. Shortly after that, I was sent for another 3 weeks of rehabilitation. There, the doctors and Physiotherapist decided I needed to use a wheelchair to protect my other joints. The Occupational Therapist suggested I get a long shoehorn, elastic shoe laces, a dressing stick, key turner, special jar opener, etc. All of these aids do help make life a little easier.

Wheelchair

Wheelchair life stinks, at least for me. I give kudos to those wheelchair riders who have not let it limit their lifestyle. I just do not seem to have that in me. I hate needing someone to help me transfer from wheelchair to vehicle and back again and having to be pushed everywhere we go. A wheelchair van would definitely make life easier, but as with most of us, it is not in the budget. When my GP said I could not drive anymore due to my RA neck damage in 2004, the independence I had behind the wheel was gone. It was around this time my Rheumatologist, looking at the amount of neck damage on an x-ray, said I must have had Juvenile Rheumatoid Arthritis as a child. This explains all the braces on my legs when I was a toddler, special shoes, stomach problems, being diagnosed with mononucleosis every 2-3 weeks as a preteen and poor stamina for Physical Education. Leaves you to wonder, had I been diagnosed correctly, would I be healthier than I am now? Who knows and, at this point, it does not really matter.