Monday, January 2, 2017

Stream in paragraph form (for Christie)

I wonder if there are any PALS who also have ostomies...
It is getting harder for me to change my bag because it requires me to be in standing position for a longer period of time than my body is comfortable with right now. Also because my right hand - specifically my right pointer finger - is in a slightly contorted position. Gripping things, holding things, doing that "pincher" move that you so eagerly wait for your baby to do with Cheerios, is all more complicated. I am still able to do it but the bathroom kind of looks like a war zone when I am done. But fuck it, I am still going to do it myself for as long as I can. I think I will ask if there are other PALS who have "Consuelas" on a few of the online support groups. Maybe they have a few tricks up their sleeves.

Because of the right hand saga, I am finding it more difficult to type text, put my contacts in, pet my dogs, pick up a sandwich or a bagel, and scratch an itch. The itch scratching - so annoying! I am right handed so my right hand instinctively moves to go scratch, and most of the time the itch is getting scratched by my pointer finger knuckle. Not a very satisfying scratch. I am attempting to train my left hand to be the itch scratcher. My left hand and leg are still stronger.

Talking about legs (we were, weren't we?), I have stopped wearing my brace on my right leg. Phoebe has gone into retirement. It became too heavy, just like the Physical Therapist told me it would (grrr...). Most of the time, in order to move my right leg while in a sitting position, I have to use my arms to assist.  So be it. The good thing is that I can wear shoes other than the sneakers I have been wearing EVERY SINGLE DAY for the past...forever amount of time. I just need to try on my old shoes and see what fits. The shape of my feet have changed. I guess because I don't really move my toes and I sit a lot so they are swollen. It is just something I have noticed.

I don't want to seem all full of myself, but I have gotten really good at transferring from wheelchair to power wheelchair, or wheelchair to bed. Adam and I have it down to a science. We bought these slippers from Walmart with really good grips on the bottom. Once I am sitting on the edge of the bed, Adam slips those on my feet and pulls the step out from under the bed. Using the good grippy slippers and the height of the step, I can then push myself further onto the bed. It is our bedtime routine. SO romantic!

Today I am wearing my old lady sweatpants. I call them that because they are the same sweatpants my Grandma Bea used to wear (no offense Grandma Bea). But they are really comfortable and easy to get on and off. So I wear them.

A really long time ago when Lisa and her husband Marc moved to Florida, Lisa and I started sending a journal back and forth to each other in the mail. This was before email or the internet and definitely before social media. It was pretty cool. And for a while, like many years, we stopped doing it. And then I found it and we started it again. And then it stopped. And now Lisa just sent it to me. I have to admit I haven't read it yet. I want to savor it. I want to sit down, at a time I am all by myself, and read the journal from the beginning. I want to think back on all those years ago and why I wrote the things I did. I want to reflect on the old feelings. I want to experience the growth and the change.

Every year for New Year's Eve, the neighborhood friends gather together at one of our homes. This used to include the kids, but as they have gotten older, less and less of them are with us. They go to friend parties, or stay in their own homes, or bunker down in their bedrooms with one or two friends. But I digress.  Adam and I thought it would be too difficult for me to get into the home of the friend that wanted to host this year, so she "hosted" it at our house. She and all the other neighborhood friends brought food (and food, and food...) and drinks (and drinks, and drinks...) here. And we ate and drank and talked and watched football, and had our yearly neighborhood gathering that I look forward to every year. I don't think I did a good enough job telling these friends how much I appreciate them doing this for me. At the end of the night, I hugged them and cried. Partly because I realized after a whole night of talking that I am starting to lose my voice. Predominantly because whenever I do a "yearly" thing now, I always wonder if it will be the last time. Or what kind of physical limitations will I have next year?

I have a regret that I need to get off my chest. I have been thinking about it a lot lately. A few years back I had a friend who had cancer. She was home, undergoing treatment. I told her I would go visit her. I never did. And then she passed away. I let my own life get in the way. I feel really bad about that.

Adam and I are going to try to eat healthier starting tomorrow. I know - the old standby New Year's resolution. People keep bringing us the most delicious food - latkes, chocolate, chocolate, cupcakes, chocolate, wings, chocolate, donuts, oh my! But now it is time to get serious! Well, maybe...

When I was in my early twenties I shared a townhome with two other women. I became very friendly with one of the women, Judi. Judi was about the same age as my parents, and was more like an older sister to me. Even after I moved in with Adam, and we got married, Judi and I still stayed in touch. Even after she met her husband and moved to Missouri, we still wrote to each other once a year, usually around the winter holidays. I just received a Chanukah card and a lovely letter from her and her husband Pat. I was happy to hear from her, but soon grew a little sad knowing I had to write her back and tell her about my diagnosis.  I wrote her back, telling her about all the good things in our lives - the kids, my parents, the dogs, etc. And then I told her about ALS. It sucks.


  1. I get so excited when I see there's a new blog entry! Tonight I found myself looking for page 2. I love hearing what wonderful friends and family you have. Your New Year's Eve celebration sounded just right. My own neighborhood has no such 'community'; I wish we did. However, I do have an extremely loving husband and four fantastic kids. I want to hear how yours are holding up. Are your readers allowed to ask questions?

  2. Love your stream of consciousness. You say what others think.