I am a 63 year old woman married to a wonderful man for 30+ years. I have 2 children, he has 3 children, 10 grandchildren, and 2 great-grandchildren. My main interests are cats, knitting/crochet, baking and cooking, some gardening, and being on the computer. In the winter of 1999, I was working for the WA State Department of Corrections Pacific County Office for Community Corrections (probation and parole). I had been with the Department since 1982. That month we were moving the office from South Bend to Raymond and I was having a nasty bout of bronchitis. I noticed that the pain in my body was worsening, muscle and bone pain. I was also experiencing sweats, recurrent fevers, hair loss, weight gain, extreme fatigue, widespread pain, reflux, problems with my speech, depression, emotional lability, headaches, burning sensations, skin painful to the touch, tinnitus, intolerance to temperatures and noise, and a host of other symptoms. After some testing (blood, saliva, etc) and eliminating a score of conditions, my naturopath came up with Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) in mid-2001. My immune system was really shot. I went on a whole regimen of supplements and vitamins and minerals, and after a couple of months, the pain in my body was increasing and my limbs were twitching and jumping out of control.
So I went to see our family physician who confirmed severe Fibromyalgia and Arthritis. My doctor and I experimented with pain medications to see what worked for me and to keep me functional as well. (By this time, I could not function in the office setting for more than a couple hours, so I telecommuted from home. The Department bent over backwards to try to accommodate me, but my job description included answering the phones and greeting the offenders which I could not do from home. I sort of medically retired in March 2003.) My doctor felt I had MS as well. The twitching and jerking of my limbs was getting worse so I went to a neurologist for the MRI in December 2003. In January 2004 I was officially diagnosed with Multiple Sclerosis on top of the FMS and CFIDS. I was put on Copaxone injections daily in January 2003. After several months the twitching sort of calmed down, but then I started in with the Restless Leg Syndrome and mental acuity was going downhill fast. In April 2006 I had another MRI. It revealed that I had a substantial increase in brain lesions (16+) on top of the original number of lesions (they literally circled my brain, with the largest around the brain stem and cerebellum). So the neurologist wanted me to switch injections to Avonex. Unfortunately, my husband’s insurance at work changed and we could not afford the co-pay amount ($500+) every month. Avonex would only be one injection per week, and Medicare would pay for 80%, but the hospital won’t subscribe to the billing red tape in order for that to happen. So I stopped taking any medication (disease modifying drugs) for MS. Instead my doctor prescribed pain medications and sees me every month.
In the past few years I have also been diagnosed with Osteoporosis, Osteoarthritis, COPD, Degenerating Disc Disease, Cervical Stenosis, and recently had an emergency gall bladder removal. Thank goodness my husband and I are Reiki Masters. Without Reiki I really feel that I would be mostly bedridden or in the wheelchair one hundred percent. I am also involved in Crystal Reiki and Animal Reiki. I would be lost without my cats, who provide companionship and unconditional love. One of my cats, KoKo, knows when I am doing too much and will tug at me and poke me until I go sit in the recliner to rest. They make great service animals. They truly give unconditional love and are easy to care for.
Since I cannot afford the medications, the tools for everyday living are important to me. And since I am progressing steadily, tools will become more important as time goes by. By tools I mean things like button hooks, my power chair, canes, safety bars and stools in the shower, those grabber things to reach up into the cabinets, my hair dryer that has a cool setting for my heat intolerance, and other things like that. There are lots of things out there that are great for folks like me: the Swivel Sweeper® which is much lighter and easier than the vacuum cleaner. I have two-one for each end of the house to reduce the trekking back and forth. I have to have a Craftmatic bed in order to sleep – when I can sleep that is. Insomnia has been my close friend for years. The down side is that it is a twin and too heavy for the upstairs bedroom, so I don’t get to sleep with my husband much. I bought a portable dishwasher because just washing dishes would cause severe pain. I have a motorized wheelchair for long shopping trips and trips to events. I seldom leave the house except for shopping or doctors. I cannot drive too far, so I am stuck in Raymond. Even though Marysville is only a 3 hours away, it is impossible for me to go up for a visit to my grandkids without suffering severe consequences. We usually have to get a hotel room overnight and come home in the morning. Even then I am bedridden for a day or two. My
other children/grandchildren also live very far away.
My mental acuity and speech has suffered quite a bit, including my memory and reading skills. My husband has to translate for me a lot because I cannot seem to find words. My vision is good at times and bad at others, and my balance is out of kilter. So far the numbness/paralysis is mostly on the right side and is an everyday event. Some days are worse than others. The numbness has been creeping into my left arm lately and my memory is very bad now. My handwriting turns to gibberish after a couple sentences. I try to make a little extra money by making jewelry but it is hard due to the shaky hands. I save some of the money I make and give it to the MS Society.
I spent some time in the last few years advocating computer games for MSers and shared on forums all the game sites I used. It definitely helps to clear the head sometimes and helps us to hang on to our brains. When people tell me that I don't look sick, I give them a short definition of MS and Fibromyalgia and then ask they research it and give a donation to research for a cure.
.My husband is a log truck driver and has scoliosis and high blood pressure. He gets up around 3 AM and goes to work. Seldom do I see him for dinner. This means he is on the road from 12 to 16 hours a day. We are very lucky that he has managed to stay employed. He is my best friend, my caretaker, and the love of my life. He never complains when I ask him to do the shopping or to stop at the store or pharmacy on the way home from work. He always has time for me, whether it is to fetch something for me or help with dinner or running an errand. He gives me a Reiki treatment every day and will keep a close eye on how I am feeling. Lately he has even watched my "Housewives of...." programs!
If I feel well enough, I spend my days working at my home business making healing gemstone jewelry and some aromatherapy products like incense, soaps, oils, etc. I take care of my cats, bake, work on the computer, play games on the computer, and garden a bit.
Having MS has put a halt on my career and other goals, so I have adjusted to the life of a disabled person. One of the biggest challenges is adapting every day because every day is different. I never know if I will wake up and be unable to walk or see. Adapting to the symptoms every day keeps me on my toes. What do I say to others? I say be positive! You can take a day of horrible MS challenges (symptoms) and turn it into a positive day. How? Perhaps by using the time helping others whether it is on a computer forum or calling someone and listening to their troubles. You have to maintain a sense of humor because without laughter there is only darkness and despair. So crank up the music, and dance and laugh and dance and laugh and sing and dance! (YES you can dance in a wheelchair.)
I give to the MS Society at least twice a year if I can. Remember that all you give will come back to you in a wonderful way! Blessings to everyone!