New information: Rate of ALS is lowest in Alaskan natives and Native Americans. So maybe something can be learned from studying those populations. Or maybe I should move to Alaska or a Native American reservation.
By now, you would have to be living in a cave or in a coma for the last few days, to not know that Angelina Jolie announced that she had a double mastectomy a couple of months ago, as a result of having genetic testing [for the breast cancer gene -- BRCA1 and BRCA2]. The first thing I thought about was my own mother, who had breast cancer for the first time in 1976 and then had a recurrence in the other breast in 1994. That second occurrence led to metastasis and unfortunately my mom passed away on October 29, 1995. My Mother's mother died of breast cancer in 1948 at the age of 50, and my mother's youngest sister died at 35 from breast cancer in 1970. Now, my mom's younger sister [80 now] and older sister [84?] are both breast cancer survivors. Faced with that risky family history, I have my mammogram every year, but never had the BRCA test. But what if I had had the double prophylactic mastectomy that Angelina had? I still would have gotten ALS. So, although Angelina Jolie brought her breast cancer risk from 87% to 15%, it doesn't preclude her getting other diseases. I might have considered taking the same route because I don't need a BRCA test to tell me I am at high risk for breast cancer. And I still would have gotten ALS, and would have been still at risk for other cancers. And even if there would have been an intervention to prevent ALS, I wouldn't have taken the opportunity because ALS doesn't run in my family, and was the furthest thing from my mind.
I am having a very painful six weeks. I had to put a stop to my home physical therapy because of intense pain in my left knee. The pain still persists. If I don't sleep on my right side, I don't sleep. I have to tilt back in my wheelchair much more than before, and prolonged periods at the computer with my legs hanging down, are painful. I hate to take pain medication, but the pain is so unbearable, I have no choice. My MRI shows no tears or rips and surprisingly, no arthritis [another condition that runs in my family-- my father's side]. So the orthopedic doctor gave me a prescription for physical therapy-- this time to strengthen the knee and calm down the pain. Not helping the matter was a sore on my left foot from abrasion of my AFOs. So off to the orthotist I went and she put extra padding in my AFOs and found an "off the shelf" orthopedic shoe that actually fits over my AFOs and will cost half [after needed lifts are put in], than the $800-1,000 initially quoted for custom shoes [which is why I never ordered them], out-of-pocket because Medicare will only cover them if I am diabetic [a disease I have escaped so far]. The whole process of setting up physical therapy has to be started again. Then, I got a raging spring cold. Colds have to be managed carefully in ALS patients because they can so easily turn into pneumonia, which can be fatal for us.
My beloved bunny Chelsea ended up at Catnip and Carrots Veterinary Hospital for a week after almost dying. Last Friday, she lay in a corner, not moving and not eating. Later in the afternoon I offered her some banana. When she refused the banana, I knew there was a problem. I contacted my whole network of bunny rescuers. A few offered to come but didn't have cars and could not transport her to the vet. I might mention that Chelsea had just come out of a crisis -- she had a very sore hock [foot] that necessitated a stay at Nancy's house and trips back and forth to Catnip and Carrots to change her dressing. Although I knew her sore hock had healed, I thought her lack of movement meant that maybe her hock still bothered her. Later I had to face the reality that she was in great danger. Mary Ann and Nancy came about 11:00 pm and Chelsea's temperature wasn't too low [in bunnies, the temperature goes down in sickness -- not up like humans], and Mary Ann felt her gut sounds were normal. But she took Chelsea to her house so she could monitor her temperature. The next day -- Saturday -- after staying up until 3am to monitor her temperature, administer medication, and put her on heat -- Mary Ann had someone take her to Catnip & Carrots because she was puzzled about why Chelsea still refused to eat. The vets said it was a case of bloat, which can come on suddenly and is often fatal. Had I failed to act, and had Mary Ann not been vigilant enough to make sure the hospital could take her [they were swamped and initially said they couldn't fit her in]. Had she or I waited any longer to take action, Chelsea would be dead.
The other thing I didn't need was a letter from HRA that my homecare would stop on May 1 [I received the letter around a week before that deadline] because I never returned my recertification form. I had never received a recertification form. Moreover, I have a document, signed by my caseworker, that says I am certified for homecare until October 31, 2013. My caseworker says he will work to straighten this out, but in the meantime, I should submit an M11Q [medical request for home care]. So, since my next clinic appointment isn't until July, I have to make a boondoggle trip to my neurologist for an extra exam so he can fill out the form.
My knee makes Access-a-Ride very painful because having my foot on the footrest for any length of time causes pain. Ditto for any riding in the wheelchair through the street. Because of this, I haven't had the inclination to leave the apartment, even though there have not been many offers by people to take me out anyway. I have asked ALSA for a volunteer this summer to go out with me, but they haven't found anyone yet. I have a problem keeping in touch with people; even when I send an email to a friend asking "how are you?" they seem to take it as "Why haven't you been around?" and respond with a litany of how busy they are and all they are doing. Because of this, I have made a resolution to not keep up my part of a friendship. I can't even ask "how are you?" or give an update on myself without either getting no response, or getting a response that really annoys me. Why do people always think it is about me? Or worse yet, when I write to a friend with concern about some issue she is having, why do they always answer with "Don't worry about me. What you have to deal with is so much worse". I have come to the conclusion that I cannot even GIVE to a friendship without the other person feeling I am only thinking about myself and/or pimping for attention. I would rather have truths than people tiptoeing around me, as if I am fragile and might break. I think I have demonstrated that I am a lot stronger than they think I am. I can deal with the solitude and isolation I once feared so much that I would do anything to avoid. I am now in a situation I feared so much, proving you can adjust to anything.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, May 23, 2013
A Very Tough Several Weeks: Challenge After Challenge
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