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Friday, April 25, 2008

Nutty Neighbor, Clinic Visit, Medicad is Bleeding Me

ferncohen.com
It's been an interesting week for sure!
First of all, please show your support by clicking on my newest articles. On Associated Content, I wrote about finding your "googleganger", which is someone with the same name as you. You can also read about the day I met my googleganger at college, and the maddening result. Use this link
and you can read my metblog posting about a new African restaurant in the Meatpacking District. It's not a review because I will never get to go there and try it out, but maybe someone can, and report back to me. Check out this link.

Saturday night, I went to an extended-family seder given by the family of a friend and her husband [he has ALS]. It was nice; we took Access-a-Ride, and Ellita liked gefilte fish -- go figure! And because we had to leave before the main course, Sue sent us home with three containers of food. True to Access-a-Ride, we had to be outside at the scheduled pick-up time, but waited for forty minutes outside when we preferred to be inside eating. But, if you are not out in front when they arrive, they leave. I have frozen in sub-freezing cold, gotten soaked in pouring rain, and sweated in sweltering heat waiting for transportation.

Monday was my quarterly visit at the ALS clinic. I will be starting the low-dose lithium as soon as my pharmacy gets it in. I have to have weekly blood tests for a while, then bi-weekly, then monthly. My biggest challenge will be taking in the extra liter of water daily. I will either have to thicken it, or put it through the PEG. And then there is the peeing.....ok TMI....

Monday night I saw the urologist for my persistent UTI. I have to have two sonograms -- pelvic and stomach. For the stomach, I can't eat for 6 hours before, which I can do. But, for the pelvic, I have to drink [or put through my PEG tube] 10 cups of water, and then hold it until the test is over. I've done this before, and it's not fun!! I hope I can do this!!!! I'm not in my 20s anymore......

According to Dr. Scelsa, my muscle function is stable from my last visit, which is great news! My next visit is July 14 [Bastille Day]. It's hard to believe how this year is flying by!! I am starting this week on the experimental low dose of lithium that was studied in Italy. I will have to get my blood tested every week for a while to make sure it is not damaging my liver and kidneys. On top of that, the urologist says i have to go for two sonograms -- a stomach and a pelvic. For the pelvic, I have to drink, or put in my tube, 10 cups of water, and hold it until the sonogram is over. I don't know how I am going to manage this.

And there is another thing I don't know how I am going to manage. Out of the $745 that I am allowed to keep every month, which is used up by old debt payments at the highest possible rates, I now have to pay $109 every month to the home care agency to keep my home care. I don't know where they expect me to get this money. My hair is already a multicolored overgrown mess, because I have not had the money to get it cut and colored. I have nothing but Old Navy tee shirts that fit me, because I can't buy anything new. I guess it's a good thing I lost friends, because I wouldn't be able to afford to go anywhere with them anyway. I just don't know what else I can possibly give up!

Anyway, I finally got some sleep last night, after several nights of having to call the police on my upstairs neighbor who was blastng her TV so loud all day and night, that my apartment shook! My super finally talked with her daughter, who is going to take Mom for a hearing aid next week, thank God! So if everybody could just click on my Associated Content articles, it would help me! And if you know any crafters, tell them to go on eBay to bid on my rubber stamps and other craft supplies I am selling off! My seller ID is fec139. I have the first chapter of my book done. If I could only have a quiet place to work without the TV going [aides have to be occupied], I would be fine. I am thinking of having the aide drop me off at the library sometimes with my laptop [they have wi-fi], just so I can have a few hours of concentration!

Thursday, April 24, 2008

February 7, 1964 [part one]

I remember the day I was born. My birth certificate says I came out of my mother's womb on June 7, 1955, but the date I was born was more than eight years later -- February 7, 1964. We all have days that change our lives, and the world, forever. I do remember a day about three years earlier when someone shot our president, and that was supposedly changed the world. I remember a lot of people on television crying, even men. All of a sudden John Kennedy's face was everywhere. And I remembered he had a little girl around my age. I recall briefly wondering how it would feel to have your dad shot to death, and see it on the news. But my dad wasn't the president, and I couldn't imagine why anyone would want to kill a mailman like my dad. The only person who got angry with Dad was Mom. So, although I felt sad that a little girl and her younger brother had to lose their daddy, I can't say that it changed my life any. I played with my friends and went to school as I had done before the president got shot.

Anyway, these days that change your life always start out to be very routine. We almost never wake up and say "This is the day that will change my life". If we wake up and think "this day will change my life", it won't. I knew this Friday morning was going to be somewhat exciting to an eight-year-old in the fourth grade, but I didn't realize how much it would change me; as a matter of fact, this day would change America, and was part of something that would change the world forever. My world, and the way I looked at life, was about to be flipped around in a way that I could only begin to fathom many years later.

Mrs. Hazelcorn, my fourth grade teacher, took us on a lot of field trips that year --probably one a month. She needed to enlist a lot of moms to go on the field trips. And this was the sixties, when most moms were home. I think Ellen Wallach was the only kid who had a valid excuse; her mom was a teacher. Teaching was the acceptable career in those years for a Jewish mommy; otherwise, they just stayed home, and most of us had a mom in the house when we got home from school. I liked going to Ellen's house after school, because she had a key and her mom would come home a little after we arrived, so we could do whatever we wanted for at least 45 minutes to an hour. I didn't appreciate the fact that my mom was always home. I wanted Ellen Wallach's life, with my own key and an hour to do whatever, with no mom there to breathe down my neck. So Ellen had a valid excuse to say that her mom couldn't go on class trips. After all, Mrs. Hazelcorn couldn't go on her kids' class trips. But she wouldn't accept my mom's reason for weasling out of her duty -- that I had a baby sister at home. "Mrs. Hazelcorn wants to know when you are going on one of our trips", I would tell my mom. "You tell Mrs. Hazelcorn that if she wants me to go on a class trip, she can hire me a babysitter." End of subject.

So I set out that day to PS286, the Jane F. Shaw School, in my neighborhood of Sheepshead Bay in Brooklyn. Dad insisted on calling it Idlewild Airport, even though less than three months before, the name was changed to John F. Kennedy Airport. Dad said he never liked those Kennedys. They were bums. Their old man hated Jews. It was sad that President Kennedy was assassinated, he said, but those Kennedys were no damn good anyway. I didn't care what they called it, I was going to an airport for the first time in my life. Mom told me I might see people in foreign costumes, like the ones in my book at home "Children Around the World". "Look for women in saris, or people in African dress. You might see a Frenchman wearing a beret, or even a Dutchman with wooden shoes, or a Japanese woman with a kimono", Mom said. I told her I would look for those things. I got even more excited as we walked onto the bus, and Mrs. Hazelcorn told us that we were going to try to get into a real airplane!

Sunday, April 20, 2008

I got my AFOs[ankle-foot orthotics] and stretchy shoes to wear with them. They make a huge difference when I stand and transfer, but I want to have some physical therapy sessions to see if I can take a few steps with the walker using them. I figured out that if I remove the bathroom door, I can get my wheelchair right up to the bathroom door. Then I can just get a shoki screen at the beginning of the entrance to give privacy to the aides when they use the bathroom. We are not allowed to pay the super or the porter to do odd jobs anymore, so I need to find a handyman. And if I replace my sink and vanity with a wall-hung sink, that will free up more floor space. Also, I need to remove the hamper and fill in the tile where the hamper was in the wall. All this will be way more manageable in cost than the renovation that I had planned. It will probably only cost a few hundred dollars. I am going to the ALS clinic tomorrow, so I will see what the PT there says about PT sessions. I already have a prescription and referral to a place in the neighborhood from the podiatrist, but I want to consult with the ALS PT.

I actually went to a Passover seder last night. Since ALS, I have not been to a seder. So my friend Sue Turin, who is caregiver to her husband Rob, who has ALS invited me. It was a family seder of about 25 people, but they rent a room in a temple in Glen Oaks. Ellita and I took access-a-ride and it all worked out perfectly. I've really felt very left out, every Passover since ALS, because it is my favorite Jewish holiday. I have a lot of Jewish friends, but for whatever reason, no seder invitations. So when Sue invited me, it was a nice surprise, and it really meant a lot to me!

Last weekend, I had my weekly visit to Starbucks with Judy, something I look forward to every week. I also went to Applebee's with my neighbor Lisa. Gulshan called from India to say that her husband's brother, who sustained injuries from the accident he was in with Gulshan's husband, now also died. So she will be over there another two weeks. I really miss her!

Friday, April 11, 2008

I went back to the internist today. The blood pressure was 144 over 88. This was acceptable to her, but it's still too high in my book. It should be more like 125 over 75 or 80. So I am still trying to lose weight, and keep the stress level down.

I am trying out my new braces/AFOs [ankle-foot orthotics]. I have a prescription for physical therapy [as much as they will cover, which usually isn't much] and the foot doctor recommended a PT right in the neighborhood. But since I have my ALS clinic appointment a week from Monday, I will wait until I see the PT there, in case he has any recommendations about what I need, and if I need to go to a more specialized PT.

Something I am perturbed about is the UTI that still persists. The doctor gave me a whole different antibiotic to take for 2 weeks. And I also have an appointment with a urologist the night of my clinic appointment. I am so not-thrilled with this. About 20 years ago, I had persistent UTIs and I was under the care of a urologist for about 2 years -- not a favorite time of my life, I have to say. But, I have felt more weak and tired than usual, and about a week ago I had an unexplained ache in my side. I thought I had pulled a muscle, but it might have been this infection.

Today Chelsea is worrying me. She seems more sluggish than usual and this afternoon she did something that looked like a convulsion, or maybe it was a series of sneezes. Either way, it's worrisome, so I am going to have to call the rescue ladies

Last Monday, Rehabco called to say they were coming the next day, and I was thrilled to be getting my wheelchair back. But someone came on Tuesday and said he was here to pick UP my chair! I said "this chair is a loaner from the ALS Association. It isn't even your chair!". He called his office and sure enough, it was an error. My chair isn't ready yet. I am still stuck with this chair that is slower than molasses.

Donated $20 to Idol Gives Back. It made me feel good to be giving rather than receiving. I am so thankful for everything I receive!

Thursday, April 10, 2008

ferncohen.com
Idol Gives Back
well, nothing like this show to remind me that I have no right to complain about anything. Today, I am okay, and I will be figuring out a way today to give something back. In fact, I will be looking at ways to pay forward what others have given to me. When my own bills are paid this month, and every month, I commit myself to giving some of what I have left, no matter how small. Even if it's a piece of clothing given to a charity that dresses homeless women to go out on a job interview, I do have excess. I have been blessed with 52.7 good years so far on this earth [and I hope a few more]. Any writing about it on my blog will be for me to keep myself in check, and hopefully inspire others to be thankful for today, and to give one little thing whenever possible, to make someone else's life better. The one thing that sticks with me is that $10 can buy netting to put over the beds of babies in Africa to keep the mosquitos out, and save babies from malaria. I am going to start with that.

Idol Gives Back
well, nothing like this show to remind me that I have no right to complain about anything. Today, I am okay, and I will be figuring out a way today to give something back. In fact, I will be looking at ways to pay forward what others have given to me. When my own bills are paid this month, and every month, I commit myself to giving some of what I have left, no matter how small. Even if it's a piece of clothing given to a charity that dresses homeless women to go out on a job interview, I do have excess. I have been blessed with 52.7 good years so far on this earth [and I hope a few more]. Any writing about it on my blog will be for me to keep myself in check, and hopefully inspire others to be thankful for today, and to give one little thing whenever possible, to make someone else's life better. The one thing that sticks with me is that $10 can buy netting to put over the beds of babies in Africa to keep the mosquitos out, and save babies from malaria. I am going to start with that.

Sunday, April 6, 2008

Our New Celebrity Spokesperson

ferncohen.com
In 1987, actress Angela Lansbury ["Murder She Wrote"] lost her sister Isolda to ALS. Now, she has become the ALS Association's new celebrity spokesperson
check out Al Roker's interview with Ms. Lansbury on NBC's "Today Show"

Saturday, April 5, 2008

Would YOU Choose to Live Like Me, If It Meant Living to 150?


ferncohen.com
For those of you in the NYC metro area, why not check out my latest posting to metblogs and vote for the most annoying TV ad spot ??

And everyone can check out my articles: Would You Want to be Frozen Until They Find the Cure? on Associated Content, or If You Could Live Until 150, Would You? which I wrote after I watched the Barbara Walters TV special last week.

which leads to a subject which is probably going to be a subject for another article:The "I'm Dying Anyway" Syndrome. When you think about it, we are all dying. Some of us will live long and die of old age. Some of us will die of a terminal disease and know we have limited time left. Still others of us will just not wake up, die suddenly, or meet with a tragedy. The top story today in NYC is a 24-year-old Columbia University graduate student who was running from muggers, and got hit by an SUV in the street on Broadway and 122nd Street. He died early this morning at St. Luke's Hospital. A real senseless tragedy. Thankfully, very few people die in such horrible circumstances. But how about people like me who are diagnosed with an illness that typically causes death within 2-5 years of symptom onset, on average. "Average" is the operative word here. But when I was diagnosed, I fell into the "Let me enjoy life since I won't be here long anyway".

So a good 5 years after my symptoms appeared, I let a lot of things go. I am embarrassed to say that I haven't been to the dentist in over 4 years. As difficult as it is going to be to find a dentist to work on me, I was referred to the NYU School of Dentistry Clinic. Before my teeth fall out of my mouth, I have to go. And then there is the issue of my weight. I figured I could just eat whatever I wanted, whenever I wanted -- NOT!

My wheelchair is in repair, so I have been using a loaner from the ALS Association. My blood pressure is lower, but not as low as it should be. I must lose weight, not an easy task when you can't exercise. I am hoping when I get the new shoes next week, that with the brace I can get some physical therapy approved. Medicare only wants to give [limited] physical therapy when it is to improve a patient. They could care less that range-of-motion exercises can greatly improve the quality of life of an ALS patient. There is still the attitude in the insurance and healthcare field that people with ALS are "goners" anyway, so why improve our mobility or quality of life?

Anyway, I posted the question on one of my discussion groups, "Would You Want to Live to 150?" and I got some responses like "not if I have to be in a wheelchair and have my diapers changed", or "not if I couldn't drive anymore, and definitely not if I couldn't walk or talk" or this one "I would only like to live to 150 if I could take care of myself and be totally independent. If someone had to take care of me, I would rather be dead". I laughed to myself, because 5 years ago, that would have been my response.