My RA Story

My RA Story

I was diagnosed with RA in 1984. How did I get it? Good question –there are many theories out there about what causes RA, but the general consensus is that we are genetically disposed to the disease and it takes some kind of shock to our system to awaken the sleeping beast.

What was my trigger?

In December of 1983, I twisted my ankle coming down some icy steps. I was four months pregnant at the time and the swelling never did go away and then I was diagnosed with toxemia. Then in April of 1984, our first son died an hour and a half after birth. The pregnancy was great and we had no idea Michael had Potter Syndrome until he was born. The aches and pains got worse in my ankle and after two miscarriages they began to spread to my hands. It was suggested I not get pregnant again. My husband & I wanted more children so we applied for adoption. That same year, my husband had a work accident and could not work for the next 2 years. September, 1984, I was diagnosed with Rheumatoid Arthritis.

Diagnosis

My Rheumatologist was fantastic. He took one look at me and was able to diagnose me on the spot. He then sent me to have x-rays and blood work done for confirmation. Next, I was sent to the Arthritis Clinic to talk about range of motion exercises, resting/working splints, hot wax treatments for my hands and other ways to protect my joints. Showing me a video of a woman in her late sixties who was crippled up and in pain with RA was the biggest mistake they made at the clinic. I was 24 years old; I knew I was never going to look like that so I did not take the advice to heart. I will be 50 years old this year and that is the only big regret I have; I didn’t take that video seriously. If it had been of someone in their late 30’s or 40’s maybe I would have. My advice to anyone who has just been diagnosed with RA is to do the range of motion exercises 2 to 3 times a day, rest when necessary and use the splints as suggested. Do everything you can to slow this disease down!

In 1986, my beautiful, healthy daughter, Lisa, was born. Unfortunately, as with most of us with RA, after giving birth, my body was attacked again. I lost weight, was overcome with fatigue, and the pain was awful. Luckily for me my husband was still home from his accident and my mother was nearby so they were able to look after Lisa and myself. I was put on Prednisone, my symptoms began to fade and I was able to go back to work.

Naturopathic Stage

It was soon after that I decided to go to a Naturopathic doctor. At this point, I just want to say what works for some people with Rheumatoid Arthritis might not work for someone else. I was put on a specific diet and was not to consume red meat, white flour or white rice, processed food of any kind, shade vegetables and prescription medication. Needless to say, I was not very happy, but I stuck with the diet for 9 months and the end results were not what I had hoped. I got worse – this is to be expected at first, but I did not get better. As a matter of fact, according to my Rheumatologist, I had done irreparable damage to my joints and was bed ridden. I had to quit my job. The Naturopathic doctor finally said he could not help me. I was sent to a rehabilitation hospital for 3 weeks.

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. 

My RA Story - Part 3

In 2009, I had my left hip done. I was not in as much pain with this one, but the clicking and clunking was unreal. I do not feel this surgery was as successful as the first one. I had a severe asthma attack coming out of the anesthetic. I still feel some aches with it, but the noise has definitely stopped. At this point, my GP ordered ankle and knee x-rays too, and the Orthopedic Surgeon suggested I have both knees and ankles done so that, perhaps, I could walk again.

The ankles were the worst, so they would need to be done first. When you look at the x-rays all you can see is fuzz, no bone. Ankle replacements require 6 months recovery time and at this point they only have about an 8 year life span. So it would take approximately 2 years for complete recovery from both and then they would need to be done again or fused in another 6 years. My GP does not feel my body can handle all of these surgeries and I now agree.

However, I did research the ankle surgeries and spoke to another Orthopedic Surgeon who said, although the risk was low, there was still a risk with complications and infection which could lead to having my ankle/foot amputated. I decided no thank you! I do not know about you, but I am quite attached to my foot and it is still very useful even if I cannot walk on it. I can live with the pain, at least for now, maybe in a few years they will make ankle replacements that last as long as hip replacements and without so much risk.

Well that brings me up to date! 

I think I did a fine mothering job with my daughter and my teenage sons are still a work in process : ) Being a grandparent is the best! My little 15 month grandson has learned how to climb up onto his Nana’s lap and maneuver around me in my wheelchair, as I’m sure my granddaughter, arriving in June, will too.

Are there things I would like to be able to do? Of course, I would love to be able to cook in my kitchen, play with my grandchildren on the floor, and babysit them on my own! But my shoulders, neck and hands just cannot manage those things. Accepting one’s limitations is often the hardest thing, and most of the time I do.

I have been blessed with a wonderful, supportive husband who does everything I cannot around our home and never complains. I have great parents, thoughtful children and an amazing friend, who help me through both good and bad days! I would never have made it this far without them and I thank them!