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!

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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.

Our New Celebrity Spokesperson

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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"

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

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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.

How to Remain Friends With Someone Who Has a Terminal Illness

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At my support group Monday our facilitator provided a little insight, which was sad for me to hear, but I had to hear it to make sense of something I have not been able to make sense out of for a long time. You see, at this time last year I was seeing a lot of people. Other bunny moms, friends from the neighborhood, and friends from before, and even a bunch of people from the ALS community. So I posed this question Monday night. I said "in the first two years of ALS, I had so many friends who stopped by. We went to lunch, had tea together here, or even just went out for a walk, or just hung out here. I got emails from everybody. So many people cared, and now I hear from nobody. What happened??"

Well Toby, our facilitator said "many times, people don't want to keep up a friendship with someone they know they are only going to lose" It opened my eyes. I have gotten those "I'm sorry I haven't been around but life is so crazy" emails. Now I get nothing. From anybody. Whole entire weekends go by when I see nobody except my aide. If it weren't for my Jewish Family Services volunteer Judy, I would never get out of the apartment except for medical appointments. I9 can appreciate people being busy, but everybody?? And when I did speak to people, they mentioned going to the theater, out to dinner, parties etc. But suddenly for most of my friends and family, I don't even know what is going on in their lives. This left me with a lot of questions-- What did I do to drive everyone away? Am I that tough to look at? Are they really so so busy? I bought it for a while and waited for their crazy lives to calm down, waited for them to come around again. It never happened. All summer I barely went outside. Fall was worse, winter unbearable.

So, what Toby said, is making sense. I hung on the promises : "We'll go to the city/a museum/a movie/the beach/the park....etc." There were even people who said they were coming, and never showed. I got cards, emails, comments on my blog. They loved me, thought of me, prayed for me. So now I know the truth; they never intended to see me. I'm going to die anyway. Except I'm still here. In the meantime, other people died, people who weren't supposed to die, who weren't terminally ill, or they moved away, or got married, or had babies. So here I sit with the sad knowledge that these people are gone. Their lives are never going to "calm down", the visits won't happen, the outings won't happen. Okay, okay so I have to move on. But where?? I try to break up the monotony by playing computer games, savoring what outings I do have with Judy, the connections I make at ALS functions [where I lose people to death too]

Where do I go? What do I do? How can I meet new people? How do I go places and do things when sometimes a grumpy aide is my only companion, an aide who is into hiphop, Lifetime movies, and has her own life?? There are so many hours one can spend online, so many hours of computer games I can play. Just so many DVDs I can watch. And the little things I could use help with, use a friend's input with -- pictures I want to hang on my walls, organizing I want to do. Just to have someone to drink tea and eat cookies with, sit in the park with, etc. I am also stuck by my own inertia-- it's depression. And yet I feel lucky to still be here, even if there is still a part of me that waits now that the warm weather is here, for that friend's life to "calm down". I just don't know how to get myself to feel that I am doing something worthwhile. Toby said I shouldn't take it personally, that it's not me. But it IS me.

Anyway, I found this on a site for cancer patients. Some of it applies to me, but some doesn't [for instance, I am not going thru chemo treatments. But the message is universal

It's called "Remaining Friends With Someone Who Has a Terminal Illness" and gives tips to the person who says "what do I do/say?" If you still don't want to remain friends with me, fine. But the article might help if you have another friend or family member who has a serious illness.

Governors Gone Crazy and Tragedy for an Aide

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As with everyone else in New York these days, I find myself distracted by the Governor Spitzer sex scandal, the subsequent Governor Paterson extramarital-affair gossip, and the [NJ former governor] McGreevey alleged-menage-a-trois scandal, as well as a tragedy on E.51st St., where a construction crane hit a residential building, killingg seven people. So I haven't updated everyone on my last visit to the doctor.

My blood pressure was down to 140 over 90, which is an improvement from 210 over 118, but it is still too high. Since the Benicar wasn't covered by my Medicare part D drug plan, and would have cost me $70 co-pay, she switched me to Lisinopril, and ACE-inhibitor, and told me to also take the Toprol, an alpha-blocker, again. And, she also added Crestor for the cholesterol. I've lost track of the number of pills I am taking every day. On top of this, my urine specimen showed that I had an infection, so I gt a 7-day round of Cipro. Since the Cipro pills are huge, I thought I would chew it ----- big mistake! Cipro has to be the most vile-tasting pill that ever passed my tongue. This morning was my last dose-- I hope. I managed to swallow down about 10 of the 14 doses, without having it melt on my tongue and totally gross me out. In two days, I have to give another urine sample and I PRAY that this infection is gone, because the thought of taking this medicine again, sends shivers up my spine.

My support group at Beth Israel was very emotional this week. It was Phyllis' first meeting since Stan died. She is doing the Ride for Life ad Advocacy in DC, and I have to think it will be so hard for her. Roberto's two sisters Ivette and Rachel were there Tuesday night, along with three people who lost a parent to ALS, and Susan who lost her son in August.

Another tragedy hit hard here at the beginning of the week. Gulshan, one of my aides, received a phone call from her husband's brother in India that her husband [who has been over there for several months to run a family business], was in a serious automobile accident. On Tuesday night she came to work, and was very distracted, understandably. Se said they needed to induce coma for her husband, in order to ease the swelling in his brain. She was looking forward to the next day, when they would get him out of the coma and she would be able to speak on the phone to him. Her son was already on a plane to India. Gulshan would ot be going unless he took a turn for the worst. Well, he did take a turn for the worst. Shortly after Gulshan arrived home Wednesday morning from her all-night shift, she received a call from India that her husband had passed away. She left for India where she will be for two weeks. I am so sad for her!