I grew up in Chilliwack where me, my husband, and our children live in our home near my parents and the friends I grew up with. Some of you reading my letter may even know me.
My husband and I were I busy raising our four children without any real concerns: enjoying a happy, healthy, regular life for years. I had my own housekeeping business, my husband had a secure job, the kids were doing well in school and life. Everything seemed good, until it was not.
In 2021 I began to show symptoms of what turned out to be a medical condition called Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) which is a rare type of autoimmune disorder. In autoimmune disorders the body attacks its own tissue. In CIDP the body attacks the myelin sheaths around the nerves outside the brain and spinal cord resulting in nerve damage and muscular weakness.
My first signs of CIDP went almost unnoticed. They varied from having no feeling in my hands, that I chalked up to a possible chemical burn when working in my housekeeping business, to pins and needles in my feet, to excessive tiredness that I put down to my Chrones disease and my busy life with my work and my family.
One day I went to pour myself a cup of coffee and almost dropped the coffee pot on the floor because my arm had no strength at all. Then, I dropped a small bowl that shattered on the floor at my feet. My brain was telling my fingers to grip the bowl, but my fingers were not getting the message. That was when I knew something was terribly wrong.
I went to my doctor in Chilliwack who sent me to Dr. Hakim Raghig, a neurologist in Abbotsford who performed a spinal tap resulting in my diagnosis of CIPD. He told me CIPD normally onsets when people are in their mid to late 50’s — I was only 42 at the time.
We began monthly treatments right away with immunosuppressant medication and monthly intravenous immunoglobulin (IVIg) therapy which is a common and effective treatment for CIDP. The monthly treatments worked well for the first six months, and I was able to function normally. So, my neurologist suggested we try the IVIg treatments every three months.
It made sense to lower the treatments because CIPD can present in a temporary form, a recurrent form, or it can be progressive, meaning the disease continues to get worse over time – which is what we found out I have. I had two treatments at three-month intervals, and I was still doing well, so we moved to treatments every six months – and that is when everything fell apart.
By the time I hit the six month point without treatment I was experiencing numbness, pins and needles and pain. We began the IVIg treatments, monthly and then every three weeks, but it was like one step forward and three steps back, I was weak, I was falling all the time, and I was unable to continue working in my business.
In September of 2023 I was admitted to Abbotsford Regional Hospital for eight days for IVIg, steroid and immunosuppressant treatment with physiotherapy. I could still walk, but I needed support. Once I was able to do the stairs in the physio department I returned home.
That October I was admitted to Chilliwack General Hospital (CGH) through the Emergency Department (ED) for another eight days. My neurologist felt I needed the IVIg treatments every two weeks at that point, but he couldn’t get approval for the treatments that frequently. I went home again when I could manage the stairs in the physiotherapy room.
I was admitted to CGH again through the ED on November 12th until the 18th for another round of IVIg, steroid and immunosuppressant treatment with physiotherapy. Again, I went home when I was able to manage the stairs in physio, and this time, I had subcutaneous IVIg treatments to self-administer twice a week at home.
I made it through the 2023 holiday season, though poorly. On new Year’s eve I took three steps and told my husband I needed a chair or his help or I would fall over. He took me to the ED at CGH and I was admitted as non-ambulatory because I could not walk. I was transferred to Vancouver General Hospital (VGH) main campus on January 5th where I remained for three weeks undergoing treatments of IVIg, plasma exchange, and chemotherapy with Rituximab along with daily physiotherapy.
The illness and hospitalizations have been tough for my entire family, but toughest on my son who was ten at the time and needed more support from me than my teenage daughters. My ten-year-old son really struggled with the situation, not knowing what was going to happen with me or when I was coming home, so much so that his schoolwork suffered.
When I was at VGH my family were only able to visit me three times in the three weeks I was there — and it took them four hours to get home to Chilliwack after one of the visits due to traffic. So, when it came time for my discharge from VHG I had the choice to move to a rehabilitation facility in Vancouver or back to Chilliwack General Hospital. I chose CGH to be near my family.
My husband worked full time throughout my illness and looked after the three kids still at home. My mom was
a huge help throughout, and when I was admitted at ARH or CGH she came every day to help me and help the nurses look after me which was good because when I arrived at CGH from VGH in 2024 I was able to walk assisted with a walker to the nurses’ station and to the bathroom but my condition quickly deteriorated.
Throughout my illness I had been losing weight and muscle mass and by January 31 I could not walk at all, I fell over on the scale when they were trying to weight me and as my condition worsened I felt paralyzed from the neck down – so it was a huge comfort having my mom there by my side and my family near enough that they could visit me regularly. Once when alone I tried to lean over to push a button, and I fell forward with my head leaning off the bed and did not have enough strength in my neck to lift my head again. Fortunately, the nurses were keeping good track of my and one of them helped me right myself.
On February 6th, I began a three-day treatment of IVIg, plasma exchange and the chemo treatments, and by February 9th I could roll over, push the call buttons, and sit on the edge of the bed. I had daily physiotherapy with a wonderful therapist named Rowena Cummings, who took the time to really learn about my condition and discover what she could do to best help me. To me she was more than a mobility specialist, she was my cheerleader, my confidant and my best friend in the hospital.
I was released from Chilliwack General Hospital on March 8, 2024. I have kept up my treatments and my physio since my discharge and I am pleased to say that I am weak but fully mobile again with the use of a cane. I drive, I shop, and I care for my family. I have not been able to return to work, but I am able to live a “normal” life again.
Having the level of specialized health care I experienced, and needed, close to home, in Abbotsford and Chilliwack, made a huge difference to me and my family throughout my many hospitalizations. For me and my family the worst times of this entire experience were the three weeks I spent in Vancouver General Hospital. Not because of the staff or the hospital, but because I was so far from my friends and family.
I know now how important it is to have quality health care available close to home.
None of us knows when we or someone dear to us will fall ill or be involved in an accident and need specialized, health care close to home. I ask you from my heart to please give what you can today to ensure that we continue to have access to the specialized health care we need, right here, at home in the eastern Fraser Valley.
