Can you tell me about your illness, when you were diagnosed and how it impacted your life?
I got sick August 6th, 1978. One day before my 21st birthday. It impacted my life horribly. One day I was perfectly fine and the next my whole world changed. I was in and out of the hospital for a year with high fever and rash. I had bone marrow biopsy, liver biopsy. My spleen was enlarged. They thought I had leukaemia because of the changes in my blood count. I was on a wide variety of medications before they finally diagnosed me with Still’s disease a year later. They told my Mom that my life would never be the same. I became very depressed. I lost my relationship with Benoit (the man I was engaged to).
I knew nothing of this disease as it was very rare at that time. My left hip went first. Because I was so young, they tried to manipulate my hip under anesthesia before even considering a hip replacement. I had my first hip replacement in 1979 and second in 1980. This illness attacks one joint on one side of the body and then attacks the opposite one. The hardest thing was being so young and people continually asking me what was the matter with me. I felt so self conscious and very alone.
Did you think you would have a hard time getting pregnant?
Not at all. In my mind my disability was related to an arthritis without effects on my reproductive system.
When you got pregnant were you worried that your disability would make parenting challenging?
It was only five years after my second pregnancy that my arthritis began seriously limiting my ability to climb stairs and a few other activities. Before that, I had no doubts about my ability to manage my pregnancies and care for my children. Regardless, I was able to manage—I am quite independent and determined. Chronic pain has not been pleasant, I have had to respect my limits as much as I can so that I don't injure myself, which can be frustrating when your kids want to run with you and you can't always keep up. Regardless I did push myself to be active with my family in ways that were accessible to me. You better believe if there is a dance floor I am on it with my daughters and husband.
Did you have any specific pains, issues with pregnancy?
It was actually the opposite. During my pregnancies, my arthritis went into remission. I felt great, with no pain and lots of energy. I often joked about how I could have easily become a surrogate mother as I felt amazing pregnant and would have loved to stay in that state.
Did you wonder or worry about the safety of medications that help you with pain, etc. while breastfeeding?
I was on no medication during pregnancy or breastfeeding.
After baby was born did your condition get worse or better?
After I stopped breastfeeding, my symptoms slowly returned, but didn’t limit me.
What was breastfeeding like for you? Did you have any challenges?
Yes, my first child was born at 29 weeks gestation and she was too small to nurse. So I pumped, but without the necessary stimulation of nursing (or very frequent pumping) my milk supply dried up much to my despair. I don't think pumps back then were as great as they are now. After two months I had to switch to formula.
With my second child I was thrilled that she latched on immediately and I had the pleasure of nursing her for about eight months.
Do you remember if you had a favourite position: cradle hold in a chair, laying down, etc.
Yes, I remember I often sat on the edge of our bed during the evenings and early mornings and used a cradle hold. At other times during the day, I would sit in a comfortable chair and do a cradle-type hold also while laying back.
How long did you breastfeed for?
I breastfed for eight months.
How much support did you have with raising your kids?
I raised my children largely on my own with the support of my husband.
What were the biggest challenges with raising kids with a disability?
The two biggest challenges were pain and fatigue related to my arthritis.
Do you have any advice for people who want to conceive and have a disability
In my opinion pregnancy and child rearing are manageable with the wide variety of social and medical supports available these days. The joy of raising children is well worth the extra effort sometimes needed when times get tough.
For myself there were many challenges including multiple surgeries, but in the end it’s the joy of my children and my grand daughter that greatly outweigh any of my issues.
Some of Caroline's procedures, most of which were done while being a full-time mom
1 hip manipulation
2 hip replacements,
4 hip revisions (re-replacements)
2 knee replacements
1 knee revision
2 ankle replacements
1 yttrium injection( radio active injection to kill the arthritic inflammation) but seeped up to the skin and burnt a hole through my skin on my left ankle
1 Plastic surgery to repair it (yttrium injury)
2 cataract surgeries due to prednisone use
2 surgeries on my feet to straighten toes
2 joint replacements on my fingers
1 Detached retina surgery from fall r/t mobility issues
Many laser treatments on my eye
Septicaemia 3 times
Hospitalization for going off my biologic (Actemra) before surgery and becoming so ill that the Still’s original symptoms came back. Spent the whole summer in hospital .
Infection from my last hip surgery
I’m forgetting some stuff!
How are you coping these days?
I was on a clinical trial for a couple years for a new drug called Actemra (Tocilizumab) around 2005 (before the drug had been approved in Canada). The drug was extremely effective and it basically shut down the arthritis. If that drug had been around in my early 20s I probably would never have gone through all of my joint replacement surgeries. I have an infusion on Actemra monthly and it's still working. It's been revolutionary.
I lead an active life: I love to travel, spend time with my family, go to tons of concerts, walk my dogs in our nearby conservation area and fawn over my granddaughter and puppies. Unfortunately my other joints were damaged pre biologics (Actemra), so I endure pain. It’s been over 40 years, so I don’t remember what it’s like to be pain free but I’m in a much better place physically. Still have some hard times but I try not to burden anyone with it. Not always successful.