Fern's Story
My world began to change in late 2003. I was the administrator at a small school and teaching morning Kindergarten. I loved teaching the children. They had so much energy that it kept me constantly on my toes to think of active ways to present the days information. My main motto was, “Make it fun!” I worked with a great bunch of people, and my own children were graduating out of the school so I enjoyed the time I had with them as well.
I was very active and enjoyed doing outdoor things during time off. I was very conscious of doing my bit for the planet; choosing to walk to work to help save the environment. That was me: lots of energy to burn; an A-type personality with a servant heart. My preference was to work in the background - as long as it wasn’t up front where people could actually see me!
It was this part of my personality that kept me from bothering the doctor when I began to have pain on my left knee. I was certain that it would just sort itself out if given enough time. I thought perhaps, if I drove to work for a while and cut back on my gym time, the pain would get better. Ironically it got worse not better, and if I tried to ice the swelling I nearly passed out from the pain.
I began to walk to work again; after all, taking it easy didn’t work. I switched from the weights and cardio room to aqua fit’ but the pressure of the water was really painful. I opted to do a little bit of both and hope that I could endure it. It seemed like my leg was getting weaker and I didn’t want that. I began to wear shorts as the pant legs brought me great pain. A slight breeze brought tears to my eyes. I finally gave in and went to the doctor.
It took a while for the doctor to ascertain what it was that was bothering me. He tried capsaicin type creams, Tylenol, cortisone and even sending me to other specialists including an orthopaedic doctor. I was put in a leg brace and a physiatrist recommended cessation of all activities, and then in an about-face suggested swimming and bike-riding to keep the muscles from atrophying further. No one could figure out what I had. In the meanwhile, I went to see a physiotherapist who tried ultrasound and other exercises. I continued to get worse. I went to see a chiropractor who was attentive and came up with many suggestions but still no one knew the problem. MRI scans followed x-rays. A problem definitely existed but no one knew what. Out of desperation, in 2005 I took myself to a new physiotherapist. On our first visit she determined the problem to be Complex Regional Pain Syndrome (CRPS) a.k.a. Reflex Sympathetic Dystrophy (RSD). We were very much behind on our ability to arrest the problem. CRPS treatments are most effective when they occur within the first six months of onset, but by this time it had been two years and the CRPS had begun to spread to my right leg as well. I could no longer walk far; walking had become such a struggle. Getting in and out of the car became excruciating, let alone going over bumps. Any movement sent stabbing pains through my legs and caused me to feel nauseous.
My treatments at the local pain clinic began in October of 2005. I have undergone a dozen lumbar sympathetic nerve blocks, most of them in close succession to each other. One was done without fluoroscopy - a mistake that I believe caused my disc to tear and my CRPS to exacerbate not only my legs but my back, arms and hands. It took two years to discover that my disc was torn and another year before undergoing a disk replacement in October 2008. This has resulted in some benefit to my back, but the surgery has aggravated other pain areas. I have tried over two dozen different medications, at least. Many of them have been narcotics used to fight tenacious pain. The litany includes bone scans, x-rays, Bertylium blocks, Bier Blocks, psychiatric assessments, training in Mindfulness, bio-feedback, acupuncture, massage, weekly infusions of pain medication, creams for pain, blood tests, nerve conduction tests, physical therapy, steroids, botox & cortisone injections, injections into my left knee every four to five months, a spinal cord stimulator trial, an intrathecal pump trial, proliferative therapy, 31 dives in a hyperbaric oxygen chamber, special medicated mud baths, yoga, warm water therapy, therapeutic touch and naturopathic interventions. Frequently I am poked and manipulated. I have had my muscles tested and sensitivity nerves teased; all to assess the nervous system and its hold on me. I leave in much more pain and agony each time. I dread having another new doctor meet me because I have to endure so much pain each time. Treatments designed to make me better usually result in more pain or just a small short-term improvement.
I continue to do aqua therapy despite the pain it causes me and I walk daily with the use of Nordic walking poles. I do this to fight to keep my muscles strong. I have an electric wheelchair to get around when I don’t feel strong enough to use my cane. My desperation is high, and my energy levels are extremely low. I constantly feel like I have knives poking into me, my muscles and bones ache, my skin feels everything acutely and sends a pain message. My body shakes sometimes for no good reason. I sweat when I am cold. The wind caused by someone walking by me causes great pain. I am very sensitive to changes in weather and also to cold. I suffer from anxiety, agitation and insomnia. I suffer with extreme weight loss due to the nausea that I suffer from the high pain levels. My joints are very tender and my limbs swell for no reason. I cannot take a shower without pain. I often feel like I have excruciating sunburn. I find it hard to find shoes that don’t hurt the top of my feet. I must wear soft pants only as the cloth causes me pain against my skin. I cannot be touched, even gently, without pain.
I often refer to myself as the princess and the pea! The clinic staff make sure to treat me as such. They are very kind but the effort to put this CRPS into remission remains elusive. As of May 2009, my pain specialist has determined that there is little more that he knows to try and has suggested that the Ketamine trial may be a good direction to go in. I had to quit the job that I loved, in September of 2006. I have homecare help as I can no longer do the normal things on my own. My husband has taken on the main care of our children and their needs. This makes me very sad as I want very much to be a viable member of my family and my society - to have some quality of life that is not filled with the endless pain.
Many times I have considered what it might be like to end the suffering but know that I must fight on until I have tried everything there is to try.
I have followed the Ketamine trials online and through my CRPS network of friends. Although, there is a risk, I feel that this is my last fighting chance to get my body out of pain or at least to a level that is much more manageable. I am prepared to take the risk for the chance at a life again. I want to be a mother and a wife again. I want to be able to contribute to society. I realize that I will have to travel to Florida to get assessed and then Mexico for the treatment and I remain hopeful that I will be accepted. I believe my life has a good chance of returning if I do this.
Faith’s story on Fern
My identical twin sister FERN has been suffering from a rare debilitating disease called Reflex Sympathetic Dystrophy or RSD since 2003. Often known by many other names, RSD is a syndrome with diverse symptoms characterized by chronic pain.
RSD is a devastating disease which can impair the ability of a limb to function, or all function can be lost entirely. Effects of RSD are often described as placing your body in a hot fire; an extremely painful feeling that your body is constantly burning.
I had never heard of the disorder until FERN was diagnosed. Sometimes I wish I was still ignorant of this disease and that she was still the unconditional and fun loving sister of our youth.
FERN is a dedicated mother of three to Zachary, 19, Elise, 16 and Harrison, 14 and a devoted wife to Theo of 23 years. FERN has always been one of the most generous and giving people I know; which is why it feels so terribly important that she receives all the help and support possible through this distressing time. She became an incredibly gifted artist and was well known for offering up hand painted works of art for Christmas and holiday celebrations. These remain today, as some of my most cherished possessions.
An avid member of the church, FERN was always the first in line to provide comfort to those who were ill, as well as meals and transportation to those who needed it most. Now, it is she who is in desperate need of our help.
Never wanting to make too much fuss, she downplayed the symptoms to anyone who asked and soldiered on in spite of the overwhelming discomfort. She saw doctors, physiotherapists and chiropractors as each of our well meaning relatives suggested some new therapy.
Fern has been fighting this solitary battle since 2003. She has a handicapped placard that embarrasses her. She needs the use of canes and wheelchairs designed to assist her when she is too tired to move. Strangers that don’t understand how much pain she is in, and well-meaning care-givers are constantly telling her to learn to be more positive so that she can arrest the disease.
Today, my sister is painfully thin – I look like the Incredible Hulk when I stand next to her! There is very little that would identify us as twins now. She is frustrated and feels isolated from family members who live so many provinces away.
Through all these struggles, I have felt bewildered and frustrated at my own inability to support her effectively.
Perhaps now there is finally something I can do..... She needs me now more than she ever has and I need your help to make it happen!
The exhausted pain specialists are 100% in support of her pursuit to see through her last option of a Ketamine Coma treatment. She has an appointment booked with the specialist in Florida for July 31st. Unfortunately nothing can be done without cash flow.
Her family has no funds left; they are exhausted and yet remain optimistic. Please give generously and help me raise the money she needs to get her life back – to let her children have their mother back again!
Or make cheques payable to Stewart & Mccullough In Trust
Cheques can be mailed to:
c/o Faith Wood
117 5 Avenue NW
Airdrie, AB Canada
T4B 1C9
