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!
Saturday, August 24, 2013
Another New Chapter Begins
A lot has happened since I last wrote. On June 29, 2013 I decided it was time to move. The carriage house was built in 1908. The house has been shifting and the staircase has been getting harder to climb. Even my healthy friends have noticed it, and were huffing and puffing when they reached my apartment. I saw the writing on the wall and decided it was better to move while I could still manage those stairs. That night I sent out an email to everyone I knew in the area and told them what I was looking for - ground floor, a cottage or in-law like I had in the carriage house, lots of light, off street parking, access to laundry, outside access, HEAT. A lot of friends responded right away, surprised I was leaving the carriage house and offering to help, including my good friend Scott, who went immediately into action. He forwarded my email to several friends and posted it on his Facebook page. Within a day or two I received an email from one of his friends who had sent it to her friend Steve - she gave me his telephone number and suggested I call him. I did and I knew immediately this was it. He had a cottage behind his house and the tenant of 20 years had recently moved out. Steve had been spending the last 4 months repainting, putting in new carpets, rewiring, etc. It sounded exactly like what I was looking for, but he wasn't ready to show it yet. Two weeks went by while I waited for him to be ready to show it to me. We had several phone conversations and discovered we had a lot in common - jazz, travel, writing, etc. I liked him right away. In the meantime, I looked at some other apartments, but I knew in my heart this was the one for me. Finally, I went to see it on August 15th. I parked in the 2 car carport (space for 2 cars! - all mine), walked through the patio yard (all mine!) into the large living room with 2 huge windows, almost floor to ceiling, letting in lots of light and looking out on trees. It was love at first sight. Everything was brand new - paint, carpets, cabinets in the kitchen, tile floor in the kitchen, tile in the bathroom. It sparkled. And there were windows and light and trees everywhere. There was even a laundry room off the kitchen.
The only hesitation I had was the size - it seemed a lot smaller than the carriage house. After I had walked through the apartment (Gael, Steve's significant other, insists I call it a house - actually, she says I should refer to it as MY house), Gael and Steve and I sat in the backyard and schmoozed and chatted for awhile. The weather was perfect - I could have stayed there for hours. I felt I should come see it with another pair of eyes and my sister was coming to stay with me for a few days on the 17th, so I asked them if I could give them my answer then. They said yes, with Gael adding "oh I hope you take it, I want you to live here." That made me feel great - I certainly hadn't felt that way at the carriage house for a long time. I took a lot of photos and sent them to My Village. They bombarded me with phone calls and emails urging me to take it now, don't wait, call him now! So I called Steve the next morning and said yes. He was so sweet - he said Gael would be thrilled.
My friends Francine and Linda came down from San Francisco to help me figure out what furniture I could keep and where to place it. We met at the carriage house, they took another look at my furniture (all of which I had measured) and then we went to Steve's (now mine). Linda drew a floor plan and then she and Francine went around figuring things out, marking it on the floor plan. It really helped to know what furniture I was going to be able to keep. Then we went back to Carla's and had celebratory apple martinis.
My sister Trish has been a Godsend - I never could have done this without her. I get tired too easily. It was different in 2008 - I had energy and strong legs then. She has been helping me since the day she came to see it with me. She helped me get rid of about half of my clothing, half of my dishes, most of my books, some of my furniture. I either sold it on CraigsList or a neighborhood site, sold it in an estate sale, or gave it away. It was hard and emotional for me - there were a lot of memories involved - but she kept reminding me that I was moving to a smaller place and that I had a lot of things I didn't really need, and she was right. She has been coming every week, staying 2 nights, first helping organize me and get ready for the move, and now she's been coming helping me unpack, doing all the heavy lifting and physical labor. She's been amazing. She has put her life on hold for me, not going to the gym or classes etc. I can never repay her or thank her enough. Her "sweetie" Stan has also been terrific. I had Carla's place cleaned professionally on the 17th and Stan came and removed picture hooks, filled in the holes, painted, etc., helped carry things down, made several trips to Savers (a version of Good Will) for me. He stayed overnight with Trish at Carla's when we were getting ready for the move, and again here. He's helping hang things, bolt things to the wall, set up my new tv. Oh I almost forgot. A good friend gave me a housewarming gift of a brand new 50 inch Panasonic smart tv. It's gorgeous. I never thought I would have anything like that. My friend just told me to go get something I like and then he'd send me a check. My friends Patti and Ron, who have Smart tv's of their own, took me to Costco in their van, helped me pick one out and brought it here for me. Of course, I am now obsessed with it and am constantly learning new features to the point where I'm teaching friends who have had one for a couple of years.
I had great movers - I found them through a neighbor who had moved recently. I've had help from others too. My friend Meri drove up from Soquel to be with me on the Wednesday they did the packing, and then helped me bring some stuff here afterwards. Francine and Linda drove down again from SF on moving day and waited at the new house so they could tell the movers where to put the furniture. I drove over ahead of the movers with the boxes from the refrigerator and freezer and they put it away for me. It was really helpful to have them here; otherwise I would have been overwhelmed trying to direct the movers. Again, we 3 ended the day with apple martinis in the garden.
Moving Day was the 15th - Trish and Stan came on the 16th to help me unpack. Comcast came that day to set up cable, voice and internet. Stan was invaluable in unpacking and setting up the new tv before they came and then making sure everything got done properly. They stayed overnight and helped me clear out of Carla's whatever the movers had left behind.
As I said, Trish has been coming 3 days a week to help me unpack and organize things. Thanks to her, I'm almost unpacked. Francine and Linda came down again on Thursday and did some more unpacking and decorating - they hung the framed handkerchiefs striptease that had someone had made for my mother back in the 50's and that has hung everywhere I have lived ever since - and they set up my bar - so I'm ready to entertain!
I am so lucky to have My Village and so many friends helping me. I love my new place - more even than I loved the carriage house. I also love this neighborhood. I joined the neighborhood site here and people are constantly welcoming me on it. I've also met a lot of neighbors through selling things and giving them away (yes, I am still getting rid of things - I think it will be an ongoing process for the rest of my life!). They come here and stay and chat for a half hour, give me recommendations for restaurants, etc. But the best are Steve and Gael. They are wonderful. I had the music on loud one evening and felt bad about it, so I emailed Steve the next morning and apologized, asking that he please let me know if the music is ever too loud. He wrote back saying nonsense, this is my house, and I am to do whatever I please. Gael brought over some irises yesterday as a housewarming gift. They are wonderful.
I'm sorry this is so long, but I am very excited about this new stage of my life and wanted to share it. I think it was Brenda who figured out this is the 9th or 10th chapter in my life. As long as each chapter is better than the last, then I'm ok with it. Bring 'em on.
I'm in a new town, in a new house, and couldn't be happier. Come visit me!
The only hesitation I had was the size - it seemed a lot smaller than the carriage house. After I had walked through the apartment (Gael, Steve's significant other, insists I call it a house - actually, she says I should refer to it as MY house), Gael and Steve and I sat in the backyard and schmoozed and chatted for awhile. The weather was perfect - I could have stayed there for hours. I felt I should come see it with another pair of eyes and my sister was coming to stay with me for a few days on the 17th, so I asked them if I could give them my answer then. They said yes, with Gael adding "oh I hope you take it, I want you to live here." That made me feel great - I certainly hadn't felt that way at the carriage house for a long time. I took a lot of photos and sent them to My Village. They bombarded me with phone calls and emails urging me to take it now, don't wait, call him now! So I called Steve the next morning and said yes. He was so sweet - he said Gael would be thrilled.
My friends Francine and Linda came down from San Francisco to help me figure out what furniture I could keep and where to place it. We met at the carriage house, they took another look at my furniture (all of which I had measured) and then we went to Steve's (now mine). Linda drew a floor plan and then she and Francine went around figuring things out, marking it on the floor plan. It really helped to know what furniture I was going to be able to keep. Then we went back to Carla's and had celebratory apple martinis.
My sister Trish has been a Godsend - I never could have done this without her. I get tired too easily. It was different in 2008 - I had energy and strong legs then. She has been helping me since the day she came to see it with me. She helped me get rid of about half of my clothing, half of my dishes, most of my books, some of my furniture. I either sold it on CraigsList or a neighborhood site, sold it in an estate sale, or gave it away. It was hard and emotional for me - there were a lot of memories involved - but she kept reminding me that I was moving to a smaller place and that I had a lot of things I didn't really need, and she was right. She has been coming every week, staying 2 nights, first helping organize me and get ready for the move, and now she's been coming helping me unpack, doing all the heavy lifting and physical labor. She's been amazing. She has put her life on hold for me, not going to the gym or classes etc. I can never repay her or thank her enough. Her "sweetie" Stan has also been terrific. I had Carla's place cleaned professionally on the 17th and Stan came and removed picture hooks, filled in the holes, painted, etc., helped carry things down, made several trips to Savers (a version of Good Will) for me. He stayed overnight with Trish at Carla's when we were getting ready for the move, and again here. He's helping hang things, bolt things to the wall, set up my new tv. Oh I almost forgot. A good friend gave me a housewarming gift of a brand new 50 inch Panasonic smart tv. It's gorgeous. I never thought I would have anything like that. My friend just told me to go get something I like and then he'd send me a check. My friends Patti and Ron, who have Smart tv's of their own, took me to Costco in their van, helped me pick one out and brought it here for me. Of course, I am now obsessed with it and am constantly learning new features to the point where I'm teaching friends who have had one for a couple of years.
I had great movers - I found them through a neighbor who had moved recently. I've had help from others too. My friend Meri drove up from Soquel to be with me on the Wednesday they did the packing, and then helped me bring some stuff here afterwards. Francine and Linda drove down again from SF on moving day and waited at the new house so they could tell the movers where to put the furniture. I drove over ahead of the movers with the boxes from the refrigerator and freezer and they put it away for me. It was really helpful to have them here; otherwise I would have been overwhelmed trying to direct the movers. Again, we 3 ended the day with apple martinis in the garden.
Moving Day was the 15th - Trish and Stan came on the 16th to help me unpack. Comcast came that day to set up cable, voice and internet. Stan was invaluable in unpacking and setting up the new tv before they came and then making sure everything got done properly. They stayed overnight and helped me clear out of Carla's whatever the movers had left behind.
As I said, Trish has been coming 3 days a week to help me unpack and organize things. Thanks to her, I'm almost unpacked. Francine and Linda came down again on Thursday and did some more unpacking and decorating - they hung the framed handkerchiefs striptease that had someone had made for my mother back in the 50's and that has hung everywhere I have lived ever since - and they set up my bar - so I'm ready to entertain!
I am so lucky to have My Village and so many friends helping me. I love my new place - more even than I loved the carriage house. I also love this neighborhood. I joined the neighborhood site here and people are constantly welcoming me on it. I've also met a lot of neighbors through selling things and giving them away (yes, I am still getting rid of things - I think it will be an ongoing process for the rest of my life!). They come here and stay and chat for a half hour, give me recommendations for restaurants, etc. But the best are Steve and Gael. They are wonderful. I had the music on loud one evening and felt bad about it, so I emailed Steve the next morning and apologized, asking that he please let me know if the music is ever too loud. He wrote back saying nonsense, this is my house, and I am to do whatever I please. Gael brought over some irises yesterday as a housewarming gift. They are wonderful.
I'm sorry this is so long, but I am very excited about this new stage of my life and wanted to share it. I think it was Brenda who figured out this is the 9th or 10th chapter in my life. As long as each chapter is better than the last, then I'm ok with it. Bring 'em on.
I'm in a new town, in a new house, and couldn't be happier. Come visit me!
Wednesday, May 22, 2013
Great news!
Since I last wrote, there have been many many phone calls by me to Biogen, Curascript (a specialty pharmacy for chronic illnesses) and MS ActiveSource for financial aid for drugs. I was at first told it would cost me $16,000 a month. Then 2 weeks ago I was told by Curascript that I qualified for only $958 a month co-pay (ONLY?). MS ActiveSource had told me in April that I did not qualify for assistance because I was enrolled in Medicare. Then in May my Medicare pharmacy approved the drug, but when I called MS ActiveSource on Monday to see what was happening, I was told I still wouldn't qualify unless: 1) I was in the donut hole, or 2) I was in the catastrophic category and/or had met my deductible. I had no idea about this because I get the 2 drugs I currently take for free. The woman I spoke to said she would check with my drug plan and call me back on Tuesday, which she did not do.
Just now I received a call from Curascript. First they gave me the $958/month figure again. I AGAIN told them I couldn't afford that. She said let me check the other case file we have for you. Two minutes later she said your insurance covers 25% of the monthly co-pay and MS ActiveSource covers the rest, leaving you with just a $10 co-pay.
Hooray!!!!!!
I receive my first month supply this Friday. I won't be starting on it until I return from my trip back East for my 50th high school reunion.
Hooray!!!
This is not a cure nor will it necessarily help with my symptoms (although it might), but it is supposed to help slow down the progression. And, as an added bonus, help with the psoriasis, which is what the drug has been used for the last 10 years in Germany.
Hooray!!!!!
There is no other news to report. I have been working hard in preparation for our reunion, which takes place in 10 days - yikes. We've been working on this for 2 years so it's hard to believe it is finally here. I will have lots to report after I return. In the meantime, I'm going to go do a little jig in celebration of the good news.
Friday, April 19, 2013
Oh and one more thing....
That sentence always makes me think of Columbo....
An hour after I published the last post, I received a phone call from a friend who also has MS. She pointed out to me that anyone who is enrolled in Medicare is not eligible for the $10 co-pay for the new drug, Tecfidera. I called the company this morning who confirmed this. They do have me in their system (I registered at their website) and are waiting for the request for a prescription from my doctor, at which point they will investigate other financial assistance resources. So - at this point, after waiting 1 1/2 years for the drug to be approved, I do not yet know whether I will even be able to afford to take it. Don't you just love the health care in this country?
On a brighter note, I forgot to give an update on the heating situation chez Carla. This is the first winter since 2008 that I have not been cold in the carriage house. We did get a new thermostat and Carla does turn it on in the mornings at 7 (except for when she sleeps in), and again at 5 PM. However, the operative word is "turns on". We have given up trying to get her to just let the thermostat do its thing. So, between 9 AM and 5 PM, and then again between 9 PM and 7 AM, it gets cold. HOWEVER, I was and am not cold thanks to my village. I already had 3 old electric heaters. Now, in addition to those, I have a brand new electric heater in my living room which somehow manages to heat the entire apartment, an electric mattress pad AND an electric throw on the couch, all gifts from my village. These electric heating devices in combination with the hours the thermostat is allowed to do its thing have managed to keep my apartment nice and toasty. The only problem is when I go away and she doesn't turn the thermostat on at all, but it doesn't take long to heat it up once I turn on all my devices.
An hour after I published the last post, I received a phone call from a friend who also has MS. She pointed out to me that anyone who is enrolled in Medicare is not eligible for the $10 co-pay for the new drug, Tecfidera. I called the company this morning who confirmed this. They do have me in their system (I registered at their website) and are waiting for the request for a prescription from my doctor, at which point they will investigate other financial assistance resources. So - at this point, after waiting 1 1/2 years for the drug to be approved, I do not yet know whether I will even be able to afford to take it. Don't you just love the health care in this country?
On a brighter note, I forgot to give an update on the heating situation chez Carla. This is the first winter since 2008 that I have not been cold in the carriage house. We did get a new thermostat and Carla does turn it on in the mornings at 7 (except for when she sleeps in), and again at 5 PM. However, the operative word is "turns on". We have given up trying to get her to just let the thermostat do its thing. So, between 9 AM and 5 PM, and then again between 9 PM and 7 AM, it gets cold. HOWEVER, I was and am not cold thanks to my village. I already had 3 old electric heaters. Now, in addition to those, I have a brand new electric heater in my living room which somehow manages to heat the entire apartment, an electric mattress pad AND an electric throw on the couch, all gifts from my village. These electric heating devices in combination with the hours the thermostat is allowed to do its thing have managed to keep my apartment nice and toasty. The only problem is when I go away and she doesn't turn the thermostat on at all, but it doesn't take long to heat it up once I turn on all my devices.
Thursday, April 18, 2013
A Year Later.....
I have some exciting news. The drug I've been waiting for - formerly called Biogen BG-12 and now called tecfidera - has just been approved by the FDA - finally! It's been called a blockbuster drug for MS. I submitted a form to my doctor authorizing him to prescribe it for me. The next step will be to apply for financial assistance from Biogen. This drug will cost $54,000 a year, but with financial assistance it will only cost $10 month. The perks of having no money - the silver lining in the cloud. It has a success rate of 50%, versus the 30% success rate of the current drugs, and fewer and milder side effects. The known side effects are flushing, nausea, diarrhea - but hopefully only for 3 months. I'm going to NY for my 50th high school reunion at the end of May, so I've decided to wait until my return before starting on the drug. The last thing I need is diarrhea while on a long flight or at my reunion! Tecfidera, under a different name, has been used successfully for 10 years in Germany for psoriasis. I have that as well (of course I do - why wouldn't I?) and hopefully it will help me with that too. I just have it on my scalp, but it has caused hair thinning and hair loss, so I would welcome any help I can get with that. I never knew psoriasis was an auto immune disease. It turns out I have 4 of those!
I just checked my blog to see if I had written about the fall down the stairs in October and I see that I haven't posted anything for a year! Wow. I obviously cannot cover everything that has happened in that time period. Briefly, I was following someone up my stairs who suddenly lost their balance halfway up and fell backwards, into me, causing us both to fly through the air and land hard on the tile floor in the entryway. I was in a lot of pain for about two weeks, but the lasting effect has been to my balance. I sometimes joke that I risk being arrested for WUI - walking under the influence. I am now using the cane full-time - not so much for assistance with walking as for with balance. Other than that, I'm in a good place right now with the MS. The fatigue, which is a huge problem for most people with MS, is under control - I don't take naps anymore and I often stay up until midnight - and I only sporadically have problems with foot drop or spasticity.
I am still enjoying my business helping seniors with their computers and electronics. I have a few regular clients with standing weekly appointments, I still teach twice a month at the assisted/independent facility where I also have private clients, and every now and then I get a new client through referrals. I'm not covering my monthly bills yet, but I also haven't done any marketing yet. A friend is going to design a website for me and also a brochure and then I will start advertising.
I'm enjoying working on the planning of my 50th reunion. I have already made a lot of new friends through that, some of whom I only know through email but some also whom I've met in person.
I am also still loving life here in the carriage house, but I know I will eventually have to move. it will either be because the stairs will become too difficult OR because Carla sells the house, which she is beginning to talk about. She's 76 now and it's becoming difficult for her to maintain, especially the gardening. I had really hoped to spend the rest of my life here, but I'm remaining positive, reminding myself how I felt in 2008 when faced with the prospect of moving and fearing I might end up in a depressing cookie cutter apartment. Everything always works out.
I'm sure I've left out a lot of news - after all, it has been a year - but I think I've hit the highlights. I look forward to hearing everyone else's news.
Saturday, May 19, 2012
A Weekend in Palm Springs
What follows is a recap I wrote on my high school Listserv of a mini reunion some of us had in Palm Springs. Around 30 of us came from various parts of the country - New York City, Florida, upstate NY, northern California - and it was truly glorious.
It started for the three of us on Thursday, April 26th. Meri Henriques, Ed Sobel and I (or, the three GreatNeckteers as we like to call ourselves) set out from the Bay Area by car around 9:00 AM. We had a stockpile of supplies to get us through the long voyage - sandwiches, bottled water, snacks and music on both my iPad and iPhone. The time passed quickly - at least virtually quickly as we caught each other up on the various happenings in our lives - but not so quickly by the clock. It was 5:30 by the time we wearily pulled up to David and Glenn's humble abode (NOT). They had glasses of wine at the ready which I for one eagerly imbibed. We spent a lovely evening with them, getting to know Glenn and Janice (the ExecutiveDirector of Sunnylands, the Walter Annenberg estate) and reconnecting with David, exchanging childhood horror stories and memories and lots of laughter. We then repaired to our own humble abode (also NOT - a wonderful French Provincial 3 BR 3 ½ BA house complete with pool and jacuzzi that a friend of David's was letting us use) and got a good night's sleep.
Friday was spent lounging out by the pool and soaking in the wonderful rays of Palm Springs sunshine. I'd been apprehensive about how the heat would affect me, but David proved to be right in that the dry heat was merely soothing and not at all harmful.
The Mini started officially with a cocktail party at David and Glenn's on Friday evening. The most amazing thing is that we all came together as old friends - even with people we had not only not known in high school, but of whose existence we had not even been aware. There is something about that bond of having grown up in the same town, gone to the same high school, known the same people. We all spoke (speak) the same language, get each other's jokes, can almost finish each other's sentences. There was very little reminiscing and a whole lot of just getting to know each other as adults and even more of just really liking each other. As Jill Brookman said in a recent post, it was more like a family get together. Only without the baggage. David and Glenn set the tone by being not just gracious and generous hosts, but also by being relaxed and welcoming. You would never have known that over 30 virtual strangers had just descended on them and invaded their amazing home. It was with a certain reluctance that we left to go to Jake's Bistro for dinner.
There were multiple tables of 4 or 6 waiting for us at the restaurant. My party got there late (as we did for every event - you'd think the fact that we were driving and not walking would have had the opposite result - oh well) so I don't know how people figured out who was sitting where, but it all worked out perfectly. It was as if we had the restaurant to ourselves - there was a lot of table hopping and visiting. And martini sampling - thanks again, Mark, it was a great kick off for me. i have no idea whether we were a bother to the other patrons - as far as we were concerned, it was a private party just for us.
Saturday morning we all met at the Palm Springs Art Museum, in the Kaplan/Ostergaard Gallery no less. Vinny was our docent and he had us laughing and asking questions and feeling very much a part of the gallery. We had to cut our visit a bit short as we had to get to our next meal by a certain time - some of us went back to the museum on Sunday for a more in depth visit. I would love to go back sometime myself - it's a jewel of a museum. My major regret was not having gotten a photo of JOAN (a very realistic nude statue), but Rhoda graciously took a photo for me when she went back on Sunday afternoon and emailed it to me on time for the posting of my photos. I bet some of you thought she was real! We certainly did - it was hard not to avert our eyes out of embarrassment. The artist's name is John deAndrea if any of you want to learn more about him and his body of work (pun intended).
Lunch was at Spencer's at the Racquet Club. This time we did have our own room. Again, people seemed to figure out where to sit and with whom. I know that David and Glenn managed to sit with different classmates at every meal - they were the perfect hosts in every sense of the word. After lunch we set off for Sunnylands.
Caren Knecht Blank was kind enough to post a Vanity Fair article on Sunnylands, so we all knew a bit about its background. Unfortunately, we were not able to tour the house - there was a private elite group having a retreat there that weekend - but Janice arranged for us to see a film and then a slide show in the theatre before she took us on a tour of the grounds. I took lots of photos of the marvelous Palo Verdes trees with their radiant umbrellas of sparkling yellow leaves and green trunks and I can send them to anyone who is interested. It was magical. We were also visited by a visiting tribe of hummingbirds, but try as I might, I was not able to get any photos of them. Maybe someone else did and can post them. We were also visited by a flock of Monarch butterflies, but I missed that too because I was so entranced by the hummingbirds.
We three repaired back to our house for more relaxing pool time before getting ready for dinner at LuLu's Bistro. We didn't have a private room there, but again, it seemed like we did. We were upstairs and had a whole area to ourselves.
Sunday was our last official event, and the weekend ended like it had begun - at David and Glenn's house, this time for brunch. Again, it was on the back patio and there was a wonderful spread of bagels and lox (of course - that was de rigeur!), muffins, quiches, fruit, juices, etc. We all stayed a long time, visiting again with each other, making sure to connect with any classmates we might have missed up until then. Poor David and Glenn - they must have feared we would never leave. We certainly didn't want to!
It was a perfect weekend mini, from start to finish. I haven't talked about David and Glenn's amazing house and art collection - but you can see that for yourselves in the photos we all have been posting. As we continue to have more of these minis around the country, we all become more and more comfortable with each other, and by the time we have the Big One, it really will be like a family get together. But a family that really likes each other. New friendships are being formed not only in the U.S., but abroad too - in Spain, and Tahiti (yes, that's you, Peter) and who knows where else - we still have a little over 100 of our classmates to find. And at the rate that Ram is going, we will have found all of them in plenty of time for the 50th.
I am not the first to say this, and I will not be the last, but I encourage EVERYONE to attend at least one mini if you possibly can. Abby Caine Rosenthal wants to organize one in Georgia; Meri Henriques, Howie Perlin and I are going to be organizing one in the Bay Area at Howie's house (NOT on a Jewish holiday weekend!); I'm sure there will be more in Southern California, Florida and NY. I hope I have conveyed just a little bit of how wonderful this particular one was. Hopefully more classmates who attended will be posting their photos.
And that is the way it was.
And The Journey Continues
This is the longest I've gone without blogging. I'm not sure why. Sometimes I'm waiting for news, i.e. the results of an MRI. Sometimes I'm just not in the mood, or feeling that great and I want to wait for a better and happier day. Sometimes I'm just busy. I think it was a combination of all of those. I do have lots of news - some good, some not so good.
The not so good first - I lost the bookkeeping job. It just wasn't a good fit. They wanted me to go to their office 35 miles south of here once a week at 8:15 AM and I did not want to do that. They tried to accommodate me by giving me an extra monitor and letting me do the work remotely from home, but it resulted in it taking me longer to accomplish the tasks since it was fairly complex and thus hard to explain over the phone. So that leaves me just with the techno tutoring as a source of income.
The other not so good news regards having stopped the Ampyra. Stopping had a very negative effect on me. My energy level plummeted and my right leg and foot became so weak that I could barely lift my foot and was constantly dragging my leg and stumbling. I started declining social invitations right and left and spending a lot of time on my couch. Finally, about a week ago, I emailed my MS doctor out of desperation and asked for his opinion regarding starting the pill again. I wanted to make sure that I wasn't risking making everything even worse. I should explain that Ampyra is not a disease modifying drug - it does not change the course of the disease. It just is supposed to help with the symptoms, energy and walking ability. It is a time release tablet that you take every 12 hours. My doctor agreed I should try it again, but suggested I keep a detailed daily log of how I do. So, I started it on Friday, May 11th. Luckily I have a 2 month supply left from before. I almost immediately saw an improvement - I even had some moments where I didn't need to use my cane. But then I went back to exercise class on Tuesday (I hadn't been for a few months because of how I'd been feeling) and have been having problems with my leg again. Not as bad as before however. I think I'm going to have to do exercises on my own at home. In any case, I'm remaining positive and hopeful. I think this pill is like some antibiotics - you have to take rest periods. In the meantime, I'm still waiting for the disease modifying drug Biogen BG-12 to be approved by the FDA. They're saying it's the most exciting drug they've ever seen for MS.
I'm loving my Techno Tutoring job. I have about 10 regular private clients at the Residence in addition to my 4 monthly Question and Answer sessions and basic computer classes where I'm paid by the Residence. My clients are all becoming like family to me. One of them, a former doctor, is always emailing me articles on developments in MS. Their ages range from mid 80s to 92. I also have about 5 regular clients outside the Residence. I'm getting ready to look for another similar type facility in this area. And I've just added another income stream - remote computer teaching and troubleshooting. One of my high school classmates lives in L.A. and I've been trying to help him via email. I decided one day to use with him the remote software I'd been using in the bookkeeping job that allows me to see his desktop and move his cursor. It worked perfectly! He is now a regular client. I will soon be sending out a new flyer announcing this new capability and asking for referrals anywhere in the country - or the world, for that matter. Thank God for the internet! I'm offering this to my regular clients, too, for whenever they have a specific problem as opposed to needing to learn how to do something. I will charge them just for the amount of time we spend on the phone.
One of my high school classmates lives in Palm Springs, CA and he and I put together a wonderful mini reunion there the last weekend in April. I will post a separate blog I wrote for our classmates about that along with a link to the photos I took. He and his partner collect glass works of art - their pieces are on loan to museums all over the world. They have 200 pieces in their home and their own wing in the Palm Springs museum. I was a little apprehensive as to how I would do in the heat, but even though it got to 105 degrees, I did fine. My friend had told me that dry heat is different and luckily he was right. Meanwhile we are all working in earnest on planning our big 50th reunion next June. I'm in charge of keeping a master database and welcoming in all the "new" classmates as we find them. I remember two years ago when my school friend Lyn Lederman found me on Facebook - little did we know what that would lead to. Since then we've found over 250 of our classmates and I've become very close friends with a lot of them. Some of them I didn't even know in Great Neck. It's been wonderful.
Another piece of good news - I had a new set of MRIs done last month and there is no new activity, no new lesions. That is very good news indeed. I will be seeing my doctor on June 5th. The next day I leave for Seattle. My two grandsons, Cameron and Devon, will be graduating - one from high school and the other from middle school. I'm really looking forward to spending some time with my family up there.
And speaking of family, my sister Trish and her boyfriend Stan each reached a milestone this year - Trish turned 70 (in August) and Stan turned 80. They had a joint milestone birthday party and I was thrilled to see photos of our parents going back to their wedding day and of us as youngsters. I hadn't seen those photos in a very long time.
Carla and I have decided not to go to France this Fall. She because of financial considerations and myself because of finances and my health. Unless things really improve, I just do not see how I could do a trip like that. I'm very disappointed, but the older I get, the more I realize you just cannot do everything. I'm hoping maybe I could go the following year - maybe with Brenda (hey Brenda, come to France with me!).
That pretty much sums up what I have been doing the past 4 months. I'm trying to figure out the best way to manage my health, I'm building up a new business, I'm working on my high school reunion. The nutrition program that I started in December has turned out to be very beneficial as well. I feel much stronger and I can tell that my body is more toned and functions better. Trish and Stan have decided to try it too, not for nutrition alone like I am doing, but also for weight loss, and after just a month they have each lost over 6 lbs and several inches.
I will try to post more regularly. One of the benefits of a blog, in addition to being able to update friends and loved ones around the world, is to then hear their news. I look forward to hearing from a lot of you. In the meantime, thanks for caring and always being there for me. It's been quite a journey and it's not over yet!
The not so good first - I lost the bookkeeping job. It just wasn't a good fit. They wanted me to go to their office 35 miles south of here once a week at 8:15 AM and I did not want to do that. They tried to accommodate me by giving me an extra monitor and letting me do the work remotely from home, but it resulted in it taking me longer to accomplish the tasks since it was fairly complex and thus hard to explain over the phone. So that leaves me just with the techno tutoring as a source of income.
The other not so good news regards having stopped the Ampyra. Stopping had a very negative effect on me. My energy level plummeted and my right leg and foot became so weak that I could barely lift my foot and was constantly dragging my leg and stumbling. I started declining social invitations right and left and spending a lot of time on my couch. Finally, about a week ago, I emailed my MS doctor out of desperation and asked for his opinion regarding starting the pill again. I wanted to make sure that I wasn't risking making everything even worse. I should explain that Ampyra is not a disease modifying drug - it does not change the course of the disease. It just is supposed to help with the symptoms, energy and walking ability. It is a time release tablet that you take every 12 hours. My doctor agreed I should try it again, but suggested I keep a detailed daily log of how I do. So, I started it on Friday, May 11th. Luckily I have a 2 month supply left from before. I almost immediately saw an improvement - I even had some moments where I didn't need to use my cane. But then I went back to exercise class on Tuesday (I hadn't been for a few months because of how I'd been feeling) and have been having problems with my leg again. Not as bad as before however. I think I'm going to have to do exercises on my own at home. In any case, I'm remaining positive and hopeful. I think this pill is like some antibiotics - you have to take rest periods. In the meantime, I'm still waiting for the disease modifying drug Biogen BG-12 to be approved by the FDA. They're saying it's the most exciting drug they've ever seen for MS.
I'm loving my Techno Tutoring job. I have about 10 regular private clients at the Residence in addition to my 4 monthly Question and Answer sessions and basic computer classes where I'm paid by the Residence. My clients are all becoming like family to me. One of them, a former doctor, is always emailing me articles on developments in MS. Their ages range from mid 80s to 92. I also have about 5 regular clients outside the Residence. I'm getting ready to look for another similar type facility in this area. And I've just added another income stream - remote computer teaching and troubleshooting. One of my high school classmates lives in L.A. and I've been trying to help him via email. I decided one day to use with him the remote software I'd been using in the bookkeeping job that allows me to see his desktop and move his cursor. It worked perfectly! He is now a regular client. I will soon be sending out a new flyer announcing this new capability and asking for referrals anywhere in the country - or the world, for that matter. Thank God for the internet! I'm offering this to my regular clients, too, for whenever they have a specific problem as opposed to needing to learn how to do something. I will charge them just for the amount of time we spend on the phone.
One of my high school classmates lives in Palm Springs, CA and he and I put together a wonderful mini reunion there the last weekend in April. I will post a separate blog I wrote for our classmates about that along with a link to the photos I took. He and his partner collect glass works of art - their pieces are on loan to museums all over the world. They have 200 pieces in their home and their own wing in the Palm Springs museum. I was a little apprehensive as to how I would do in the heat, but even though it got to 105 degrees, I did fine. My friend had told me that dry heat is different and luckily he was right. Meanwhile we are all working in earnest on planning our big 50th reunion next June. I'm in charge of keeping a master database and welcoming in all the "new" classmates as we find them. I remember two years ago when my school friend Lyn Lederman found me on Facebook - little did we know what that would lead to. Since then we've found over 250 of our classmates and I've become very close friends with a lot of them. Some of them I didn't even know in Great Neck. It's been wonderful.
Another piece of good news - I had a new set of MRIs done last month and there is no new activity, no new lesions. That is very good news indeed. I will be seeing my doctor on June 5th. The next day I leave for Seattle. My two grandsons, Cameron and Devon, will be graduating - one from high school and the other from middle school. I'm really looking forward to spending some time with my family up there.
And speaking of family, my sister Trish and her boyfriend Stan each reached a milestone this year - Trish turned 70 (in August) and Stan turned 80. They had a joint milestone birthday party and I was thrilled to see photos of our parents going back to their wedding day and of us as youngsters. I hadn't seen those photos in a very long time.
Carla and I have decided not to go to France this Fall. She because of financial considerations and myself because of finances and my health. Unless things really improve, I just do not see how I could do a trip like that. I'm very disappointed, but the older I get, the more I realize you just cannot do everything. I'm hoping maybe I could go the following year - maybe with Brenda (hey Brenda, come to France with me!).
That pretty much sums up what I have been doing the past 4 months. I'm trying to figure out the best way to manage my health, I'm building up a new business, I'm working on my high school reunion. The nutrition program that I started in December has turned out to be very beneficial as well. I feel much stronger and I can tell that my body is more toned and functions better. Trish and Stan have decided to try it too, not for nutrition alone like I am doing, but also for weight loss, and after just a month they have each lost over 6 lbs and several inches.
I will try to post more regularly. One of the benefits of a blog, in addition to being able to update friends and loved ones around the world, is to then hear their news. I look forward to hearing from a lot of you. In the meantime, thanks for caring and always being there for me. It's been quite a journey and it's not over yet!
Saturday, January 14, 2012
It's A Wonderful Life
What a month I have had. I'll start with a health update. I stopped the Ampyra on December 13. Unfortunately, I did not have the results I had hoped for. Not only has my walking NOT returned to how it was before I started taking the pill, it immediately worsened. I've had to use my cane daily ever since and there were some days when I could barely move. I even slept on the couch a few nights so I could be closer to the bathroom. However, lately I have had some good days, and that encourages me. I'm doing a three pronged attack on this disease: 1) rest - I'm trying very hard to get to bed by 10:30 PM (failing miserably tonight however) 2) nutrition - I'm religiously sticking to the Isagenix regime of one shake a day plus 1 oz of minerals in the morning - I can feel the difference in my energy level plus my body is feeling more toned and in balance and 3) exercise, which I will get to below. I have an appointment with the MS doctor on Wednesday, but I am feeling very optimistic that I will once again be able to put the cane away.
As I've written before, I joined the local YMCA 3 years ago and had been using their weight machines. Well, I've barely been there because of the above reasons. Then in December a friend who also has MS told me about an adaptive physical education at the local Senior Center starting on January 3rd. I went and immediately signed up and have put my membership at the Y on hold for 5 months. The class takes place twice a week and consists of an hour of stretching, weights, using the band, isometrics, leg exercises, lunges, sitting and standing with weights etc. It is very similar to the class I used to take at the local college, except without the ball. There are about 10 of us in this particular class (some in wheelchairs) and 4 instructors, so there is a lot of individual attention. I like having the discipline of a class. The pace is perfect for me - some of the exercises are particularly difficult because I can't move my right leg or lift that foot, but I try and it's getting easier. The best part however is that after the hour, one of the instructors then spends 15 minutes with me doing exercises and using machines specifically for MS and that pesky right leg.
Now on to my two new businesses. The professional bookkeeper I used to work with at my job at the nonprofit in Milpitas has hired me to help her through the tax season, at 20-25 hours a week. I can do it mostly from home remotely. I'll mainly be doing data entry so they can concentrate on getting their clients ready for filing their tax returns. This is again, like the adaptive exercise class, perfect for me, because it means I'll be earning enough to cover my monthly expenses while I build up the techno tutoring business.
Which brings me to that, which I consider to be my main business. When I first arrived at the Senior Center for the first class, I started explaining to them that I was starting this computer consulting business and so might have to miss some classes if I have a client. One of the instructors overheard what I was saying and excitedly exclaimed that she had just received an email from a local assisted living residence that was looking for just that. I had my interview on Monday and have been hired to come twice a month, starting January 23, to answer residents' questions which they will have prepared ahead of time. Of course, the goal is to have some of the residents hire me personally. I've given the activities director some of my flyers to post by each of the elevators to promote it. She and I clicked right away. It turns out one of her best friends is my next door neighbor - I was just there for a holiday party.
I've also received lots of leads of other assisted living and retirement communities for me to contact from all of you, my wonderful friends, to whom I had emailed my most recent promotional flyer. I've enclosed the two flyers here on the side. You have also emailed my flyers to your friends, as I requested, and I have heard from some of them. My favorite was a referral from Evelyn Perl. When I had my first appointment with her, I noticed that there were lots of business files around her desk and asked her what she did. She looked me straight in the eyes and answered "I kill people." It turns out she writes, directs and produces murder mystery plays! She also had spent many years on the stage in various musicals and has several walls lined with photos from the various productions. This is one of the aspects of this business that I love - meeting all these new and interesting people.
However, unfortunately I've had to cancel my planned trip to my friend Marvin's 90th birthday party in Puerto Vallarta. It's in March and I am going to be super busy through tax day, April 15th. I hated having to cancel, but I had no choice. Hopefully I will make it to his 95th!
So this year is turning out to be pretty good. For the next 3 months my life will pretty much consist of techno tutoring, bookkeeping, exercise and getting my legs back. It's amazing how much has happened since that fateful time in 2008. That seems so long ago. My future seemed so uncertain, I was filled with so many fears. Now I don't even worry about the future. I know it will work out - it always has.
As I've written before, I joined the local YMCA 3 years ago and had been using their weight machines. Well, I've barely been there because of the above reasons. Then in December a friend who also has MS told me about an adaptive physical education at the local Senior Center starting on January 3rd. I went and immediately signed up and have put my membership at the Y on hold for 5 months. The class takes place twice a week and consists of an hour of stretching, weights, using the band, isometrics, leg exercises, lunges, sitting and standing with weights etc. It is very similar to the class I used to take at the local college, except without the ball. There are about 10 of us in this particular class (some in wheelchairs) and 4 instructors, so there is a lot of individual attention. I like having the discipline of a class. The pace is perfect for me - some of the exercises are particularly difficult because I can't move my right leg or lift that foot, but I try and it's getting easier. The best part however is that after the hour, one of the instructors then spends 15 minutes with me doing exercises and using machines specifically for MS and that pesky right leg.
Now on to my two new businesses. The professional bookkeeper I used to work with at my job at the nonprofit in Milpitas has hired me to help her through the tax season, at 20-25 hours a week. I can do it mostly from home remotely. I'll mainly be doing data entry so they can concentrate on getting their clients ready for filing their tax returns. This is again, like the adaptive exercise class, perfect for me, because it means I'll be earning enough to cover my monthly expenses while I build up the techno tutoring business.
Which brings me to that, which I consider to be my main business. When I first arrived at the Senior Center for the first class, I started explaining to them that I was starting this computer consulting business and so might have to miss some classes if I have a client. One of the instructors overheard what I was saying and excitedly exclaimed that she had just received an email from a local assisted living residence that was looking for just that. I had my interview on Monday and have been hired to come twice a month, starting January 23, to answer residents' questions which they will have prepared ahead of time. Of course, the goal is to have some of the residents hire me personally. I've given the activities director some of my flyers to post by each of the elevators to promote it. She and I clicked right away. It turns out one of her best friends is my next door neighbor - I was just there for a holiday party.
I've also received lots of leads of other assisted living and retirement communities for me to contact from all of you, my wonderful friends, to whom I had emailed my most recent promotional flyer. I've enclosed the two flyers here on the side. You have also emailed my flyers to your friends, as I requested, and I have heard from some of them. My favorite was a referral from Evelyn Perl. When I had my first appointment with her, I noticed that there were lots of business files around her desk and asked her what she did. She looked me straight in the eyes and answered "I kill people." It turns out she writes, directs and produces murder mystery plays! She also had spent many years on the stage in various musicals and has several walls lined with photos from the various productions. This is one of the aspects of this business that I love - meeting all these new and interesting people.
However, unfortunately I've had to cancel my planned trip to my friend Marvin's 90th birthday party in Puerto Vallarta. It's in March and I am going to be super busy through tax day, April 15th. I hated having to cancel, but I had no choice. Hopefully I will make it to his 95th!
So this year is turning out to be pretty good. For the next 3 months my life will pretty much consist of techno tutoring, bookkeeping, exercise and getting my legs back. It's amazing how much has happened since that fateful time in 2008. That seems so long ago. My future seemed so uncertain, I was filled with so many fears. Now I don't even worry about the future. I know it will work out - it always has.
Saturday, December 17, 2011
Health Update
As most of you know, I started taking a pill called Ampyra in May 2010. It's not what they call a disease modifier - in other words, it does not stop or even slow the progression of the disease. It just helps with certain symptoms. It's a time release pill and only stays in your system about 12 hours. The dosage is twice daily. It immediately helped me with my energy. I'd been experiencing huge bouts of fatigue, collapsing onto my couch upon returning from work and not moving for the rest of the night. The day I took my first pill, I scrubbed my apartment from top to bottom. My wonderful friends Ulla and Joachim arrived the next day from Vancouver for a visit and I was totally energized the entire visit. The pill was also supposed to help improve my walking. Not only did it not do that, it seemed to make it worse. Since taking this pill, I can only walk short distances before I start having trouble lifting my right foot and I start to shuffle. It's been getting worse and worse, but I continued to take the pill because it was helping me so much with my energy. However, I started to notice a few months ago that it wasn't helping me with that anymore either. I googled the pill a few months ago and noticed that a lot of people were experiencing deterioration in their walking like I was.
I saw my MS doctor on Tuesday and he immediately agreed that I should stop the pill. It seems he's been hearing this from other patients as well. I'm now taking the pill just once a day for a week and then I will stop it altogether. My leg still becomes heavy if I walk too far, but my legs are remaining strong for almost 22-23 hours whereas before they would weaken right before I was due to take the second pill, or after 12 hours. So this is already an improvement.
Which leaves the fatigue. I have started a nutrition program called Isagenix. My friend Ed has been on it for 4 years and it has done amazing things for his health. Before starting it, he had an ulcer, high cholesterol and was pre diabetic. Within months all of that was gone. He also lost 24 pounds within 3 months. He had told me about this program a year ago, but I wasn't interested because I don't need to or want to lose weight and I kept thinking of it as a weight loss program even though he told me it also just a general wellness program. However, two things happened recently. First, my hair has been falling out and thinning for several months. My dermatologist told me it was due to my not eating enough protein. The second thing that happened is that my friend Ge sent me a video of an interview with a doctor who had cured her MS symptoms (not the disease, just the symptoms) purely through changing her diet to a paleolithic diet. That means gluten free, lots of fruits and vegetables, no processed foods, only grass fed meat, etc. She had been diagnosed with MS in 2000 and within 3 years was in a wheelchair and unable to even sit at the dinner table. She had taken the injectable drugs right after her diagnosis, but that did not slow the progression. The medical community had nothing else to offer her. So she started doing her own research which led her to the connection between diet and the brain. She is now hiking and riding bicycles, etc. Her name is Dr. Terry Wahls and she has a website at www.terrywahls.com if you're interested in reading about her.
Well, this obviously got my attention. I don't think I could follow a diet like she does - I love my food too much. But I could do something like Isagenix. Instead of the weight loss program, I'm on the Wellness program. It's been less than a week and I'm already feeling changes in my body. I can't put my finger on it, but I feel more in balance, more toned, and I definitely have more energy. I'm finally getting things done that I'd been putting off for months for lack of energy. The nutrition program consists of drinking 1 oz of a liquid that is packed with minerals and nutrients every morning, and making a shake from a powder once a day, usually at lunch time. I have my normal breakfast and dinner. I'm also finding that I'm eating smaller meals and more often during the day, which I've always heard is a healthier way to eat.
I am very hopeful and optimistic about this. I know there are no guarantees. But I have always preferred managing my health through alternative avenues rather than drugs. The injectable drug they've been wanting me to take all these years is called Copaxone. Well, I just read an article where they're finding that this drug puts a spot on your liver. Already my hair is not falling out as much. Putting more vitamins and nutrients and minerals into my body certainly can't hurt - my hope is that it will also improve my balance and mobility and energy. I will keep you posted on this here.
By the way, the doctor thought I looked great. He did a series of tests on me and said everything looked great too (reflexes, eye movement, strength, etc.).
The new drug I wrote about previously - Biogen B-12 - which they hoped would be approved by the FDA and available by the end of this year will actually not be available until next November. Maybe by then I won't need it!
Happy Holidays and New Year, everyone.
I saw my MS doctor on Tuesday and he immediately agreed that I should stop the pill. It seems he's been hearing this from other patients as well. I'm now taking the pill just once a day for a week and then I will stop it altogether. My leg still becomes heavy if I walk too far, but my legs are remaining strong for almost 22-23 hours whereas before they would weaken right before I was due to take the second pill, or after 12 hours. So this is already an improvement.
Which leaves the fatigue. I have started a nutrition program called Isagenix. My friend Ed has been on it for 4 years and it has done amazing things for his health. Before starting it, he had an ulcer, high cholesterol and was pre diabetic. Within months all of that was gone. He also lost 24 pounds within 3 months. He had told me about this program a year ago, but I wasn't interested because I don't need to or want to lose weight and I kept thinking of it as a weight loss program even though he told me it also just a general wellness program. However, two things happened recently. First, my hair has been falling out and thinning for several months. My dermatologist told me it was due to my not eating enough protein. The second thing that happened is that my friend Ge sent me a video of an interview with a doctor who had cured her MS symptoms (not the disease, just the symptoms) purely through changing her diet to a paleolithic diet. That means gluten free, lots of fruits and vegetables, no processed foods, only grass fed meat, etc. She had been diagnosed with MS in 2000 and within 3 years was in a wheelchair and unable to even sit at the dinner table. She had taken the injectable drugs right after her diagnosis, but that did not slow the progression. The medical community had nothing else to offer her. So she started doing her own research which led her to the connection between diet and the brain. She is now hiking and riding bicycles, etc. Her name is Dr. Terry Wahls and she has a website at www.terrywahls.com if you're interested in reading about her.
Well, this obviously got my attention. I don't think I could follow a diet like she does - I love my food too much. But I could do something like Isagenix. Instead of the weight loss program, I'm on the Wellness program. It's been less than a week and I'm already feeling changes in my body. I can't put my finger on it, but I feel more in balance, more toned, and I definitely have more energy. I'm finally getting things done that I'd been putting off for months for lack of energy. The nutrition program consists of drinking 1 oz of a liquid that is packed with minerals and nutrients every morning, and making a shake from a powder once a day, usually at lunch time. I have my normal breakfast and dinner. I'm also finding that I'm eating smaller meals and more often during the day, which I've always heard is a healthier way to eat.
I am very hopeful and optimistic about this. I know there are no guarantees. But I have always preferred managing my health through alternative avenues rather than drugs. The injectable drug they've been wanting me to take all these years is called Copaxone. Well, I just read an article where they're finding that this drug puts a spot on your liver. Already my hair is not falling out as much. Putting more vitamins and nutrients and minerals into my body certainly can't hurt - my hope is that it will also improve my balance and mobility and energy. I will keep you posted on this here.
By the way, the doctor thought I looked great. He did a series of tests on me and said everything looked great too (reflexes, eye movement, strength, etc.).
The new drug I wrote about previously - Biogen B-12 - which they hoped would be approved by the FDA and available by the end of this year will actually not be available until next November. Maybe by then I won't need it!
Happy Holidays and New Year, everyone.
Subscribe to:
Posts (Atom)
Posts
