Thursday, January 9, 2014
Spoon Theory
I have been trying to post a link to the article, but so far have not been able to do it. If anyone is interested in reading it, contact me and I will email you a pdf form of it. You can also just google it and it is easily found on the internet. It is well worth reading, trust me.
Wednesday, January 8, 2014
News From San Mateo
There is so much news, I don't know where to begin. One of my New Year's Resolutions is to post here more often. There is just too much happening in my life not to. I can't possibly cover everything here, but I will cover the highlights. The important thing is, as one of my high school classmates says, it's all good!
I left off with my move to San Mateo. I just love my new house, and so does everyone who comes here. It's spacious and light, the layout is perfect, I have even hung my bird feeders outside the two large windows where I spend most of my time (the living room and the kitchen where the computer is) and am daily visited by most of the avian inhabitants of the neighborhood. I hate leaving and am always delighted to return.
I no longer work at the independent living facility in Redwood City, but I still have private clients there as well as in Redwood City and Menlo Park (a little bit further south). I am planning to advertise on those neighborhood sites I wrote about in my earlier post, but so far have not had the time. I have a new part-time job working for a patent company, helping him with Excel spreadsheets and estimating costs,etc., and I have a feeling this could potentially turn into my main source of income. I am also applying for two other part-time jobs, but I won't go into those unless they work out. My life has been one long series of opportunities coming to me without my having to go look for them.
I know that the main question on everyone's mind is my health. There's a lot of news there, too. I was kind of in a holding pattern, not getting any better but also not getting any worse, with good days and bad days. I figured as long as I still had the good days, I didn't mind the bad days. And then another miracle happened. Trish, my sister, became friends with someone at her Temple who also had MS, and he told her about a weighted vest he had obtained recently that had totally changed his life. Trish put me in touch with him, and within days I had emailed the inventor of the vest, been in touch with the manufacturer, talked to the Northern California Chapter of the MS Society and been approved for the vest to be paid for by them, and contacted my MS doctor at Stanford regarding the vest which resulted in my obtaining an appointment at their Neuro Rehab (Physical Therapy) Dept to be assessed and tested as to whether I was a likely candidate (i.e. would it help me). It's a long and interesting story and anyone who wants more details can write and ask me, but the bottom line is that I was an excellent candidate and within 2 weeks I had the vest, totally paid for by the MS Society. And it's been wonderful. My PT Pam (Physical Therapist) tests my balance by gently prodding me while I am standing with my feet together and, based on the results of those tests, then applies ¼ lb and ½ lb weights with velcro on the inside of the vest. And then comes the miracle. I walk better, and for longer periods of time, my energy is a thousand times better, my balance is better. The theory is that after I wear the vest a few hours a day for a month or two, I will no longer need to wear it for awhile because of what they call the carry-over effect. There are some people with MS who are now going on 3 hour hikes solely because of the vest. You can read all about this miracle vest at their website, www.motiontherapeutics.com. It's not just for people with MS. My sister has ordered one because of balance problems and back pain. I think most people in our age group could benefit from it. Medicare will cover it for back pain. It is worth looking into for everyone. I've had days where I have had 2 clients, physical therapy, grocery shopping and gotten my nails done, all in one day, and still had energy when I got home. Before the vest, I would have been lucky to have been able to do just 2 of those things, maximum, and I would have been totally crashed when I got home. And regarding grocery shopping - forget it. Ten minutes in a store and my leg would be dragging. Now I can walk around a whole store and still be fine.
This is getting long - sorry. The other health news is that I am now part of a program through Stanford called Farewell To Falls, again free (my favorite word). Once more, I was the one who discovered this and followed up on it. It really angers me that all the doctors want to talk about is drugs. Anyway, an occupational therapist came today for 1 ½ hours, taking my medical history, writing down any drugs or supplements that I take, testing me for balance and strength (she said my upper legs are very strong and I came out normal for my age on some of the tests), and gave me some balance exercises. I will receive a phone call from a pharmacist in about a month regarding the drugs. Then she comes back and does an assessment of my house, making suggestions regarding safety. Finally, she returns a year from now as a follow-up, doing the tests again. Another free event I have signed up for is a 5-week class at the JCC (Jewish Community Center) nearby on Living Healthy. I'm going everything I can outside of taking drugs to manage this disease and be the best that I can. And no, I still have not taken that drug Tecfidera I was so excited about last Spring. I just can't bring myself to, not as long as I can try these non-invasive ways with some success.
While we're still on health, I'm going to add a link to an article called The Spoon Theory. It was written by a woman as a way to explain to her friend what it is like to have MS. Now, when I just don't have enough energy to do something, all I say is that I don't have any spoons left.
I think that's enough for now. I will try to write more often. And hopefully you, my dear friends, will write me back and give me your news. I haven't been a very good correspondent lately - my days are eaten up with medical appointments, work, exercise, some leisure like reading or watching tv, and rest. But I always answer every email I get.
I don't think I have written about my 50th high school reunion. It exceeded everyone's expectations, and the best part is that we are all staying in touch. We have created our own website and have had mini reunions around the country. Our next one will be in Palm Springs, CA - another once in a lifetime event except that this will be the second time.
I wish everyone a Happy and Joyous New Year - I know I plan on having one!
I left off with my move to San Mateo. I just love my new house, and so does everyone who comes here. It's spacious and light, the layout is perfect, I have even hung my bird feeders outside the two large windows where I spend most of my time (the living room and the kitchen where the computer is) and am daily visited by most of the avian inhabitants of the neighborhood. I hate leaving and am always delighted to return.
I no longer work at the independent living facility in Redwood City, but I still have private clients there as well as in Redwood City and Menlo Park (a little bit further south). I am planning to advertise on those neighborhood sites I wrote about in my earlier post, but so far have not had the time. I have a new part-time job working for a patent company, helping him with Excel spreadsheets and estimating costs,etc., and I have a feeling this could potentially turn into my main source of income. I am also applying for two other part-time jobs, but I won't go into those unless they work out. My life has been one long series of opportunities coming to me without my having to go look for them.
I know that the main question on everyone's mind is my health. There's a lot of news there, too. I was kind of in a holding pattern, not getting any better but also not getting any worse, with good days and bad days. I figured as long as I still had the good days, I didn't mind the bad days. And then another miracle happened. Trish, my sister, became friends with someone at her Temple who also had MS, and he told her about a weighted vest he had obtained recently that had totally changed his life. Trish put me in touch with him, and within days I had emailed the inventor of the vest, been in touch with the manufacturer, talked to the Northern California Chapter of the MS Society and been approved for the vest to be paid for by them, and contacted my MS doctor at Stanford regarding the vest which resulted in my obtaining an appointment at their Neuro Rehab (Physical Therapy) Dept to be assessed and tested as to whether I was a likely candidate (i.e. would it help me). It's a long and interesting story and anyone who wants more details can write and ask me, but the bottom line is that I was an excellent candidate and within 2 weeks I had the vest, totally paid for by the MS Society. And it's been wonderful. My PT Pam (Physical Therapist) tests my balance by gently prodding me while I am standing with my feet together and, based on the results of those tests, then applies ¼ lb and ½ lb weights with velcro on the inside of the vest. And then comes the miracle. I walk better, and for longer periods of time, my energy is a thousand times better, my balance is better. The theory is that after I wear the vest a few hours a day for a month or two, I will no longer need to wear it for awhile because of what they call the carry-over effect. There are some people with MS who are now going on 3 hour hikes solely because of the vest. You can read all about this miracle vest at their website, www.motiontherapeutics.com. It's not just for people with MS. My sister has ordered one because of balance problems and back pain. I think most people in our age group could benefit from it. Medicare will cover it for back pain. It is worth looking into for everyone. I've had days where I have had 2 clients, physical therapy, grocery shopping and gotten my nails done, all in one day, and still had energy when I got home. Before the vest, I would have been lucky to have been able to do just 2 of those things, maximum, and I would have been totally crashed when I got home. And regarding grocery shopping - forget it. Ten minutes in a store and my leg would be dragging. Now I can walk around a whole store and still be fine.
This is getting long - sorry. The other health news is that I am now part of a program through Stanford called Farewell To Falls, again free (my favorite word). Once more, I was the one who discovered this and followed up on it. It really angers me that all the doctors want to talk about is drugs. Anyway, an occupational therapist came today for 1 ½ hours, taking my medical history, writing down any drugs or supplements that I take, testing me for balance and strength (she said my upper legs are very strong and I came out normal for my age on some of the tests), and gave me some balance exercises. I will receive a phone call from a pharmacist in about a month regarding the drugs. Then she comes back and does an assessment of my house, making suggestions regarding safety. Finally, she returns a year from now as a follow-up, doing the tests again. Another free event I have signed up for is a 5-week class at the JCC (Jewish Community Center) nearby on Living Healthy. I'm going everything I can outside of taking drugs to manage this disease and be the best that I can. And no, I still have not taken that drug Tecfidera I was so excited about last Spring. I just can't bring myself to, not as long as I can try these non-invasive ways with some success.
While we're still on health, I'm going to add a link to an article called The Spoon Theory. It was written by a woman as a way to explain to her friend what it is like to have MS. Now, when I just don't have enough energy to do something, all I say is that I don't have any spoons left.
I think that's enough for now. I will try to write more often. And hopefully you, my dear friends, will write me back and give me your news. I haven't been a very good correspondent lately - my days are eaten up with medical appointments, work, exercise, some leisure like reading or watching tv, and rest. But I always answer every email I get.
I don't think I have written about my 50th high school reunion. It exceeded everyone's expectations, and the best part is that we are all staying in touch. We have created our own website and have had mini reunions around the country. Our next one will be in Palm Springs, CA - another once in a lifetime event except that this will be the second time.
I wish everyone a Happy and Joyous New Year - I know I plan on having one!
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