Always lazy syndrome

Once a year for posting seems plenty for my lazy ass self. It's not that I haven't had plenty to say, but between my fingers that don't cooperate and how whiny I think I sound....well.... Here is what I'm really noticing - every little thing is difficult these days. I am exhausted by minimal effort. I experience frustration on a daily basis. That means I can still do things - I'm not locked in and totally non functional. I think that's a good thing. Sometimes my spirit is willing, but....well that's a big but because most things I can't do. The mundane things - bathing, dressing, feeding myself are challenges I'm sick of. They are exhausting! I've given up cooking of any kind, the bed doesn't get made, blah blah blah. The amount of money spent on clothing is greatly reduced - instead it goes to a caregiver who makes sure I'm wearing clean underwear. I love her! The latest decline is my neck which, when I'm tired, seems to have a mind of its own and it is not in the clouds. Rather it's flopping onto my chest. Quite uncomfortable. The less I am able to move, the more my joints freeze. Well, my whole system is kind of freezing up (or conversly, completely floppy.) Yes, I'm in pain. Along with my physical deterioration. I find my tolerance for mental stimulation greatly diminished. About five minutes of obnoxious people, loud tv, music or crowds is all I can tolerate. So parties are not on my list these days either. And my patience for idiots, fools (never a strong point for me) is almost nil. Maybe that's a good thing too. I don't have time or energy. Hell, I don't have time or energy for the people I love!!!! Here's what I've finally learned. An ALS gift? Don't argue with stupid or crazy. It's pointless. Oh duh! It took ALS to get me to that conclusion? okay, I'm an idiot sometimes! How much time have I wasted doing that in my life? Access a Ride has taught me this valuable life lesson, and I'm truly working on ways to deal with my frustration and lack of patience. What a bunch of idiots and what a degrading experience this delightful service provides. And BTW, please don't ever tell a handicapped person how fucking lucky they (we) are to thave all the wonderful services we have. You able bodied people really have no clue if thats what you think. You be the Pollyanna - I'll be the one waiting outside in my wheelchair hoping the driver will show up in time to get me to my appointment. There are many rules - rider must be on time, but driver can be up to 1/2 late for "promised" pickup time. If you have a 2:00 appointment they may give you a 12:43 pick up time, even if the destination is 15 minutes away. If appointment is for 2:00 and said appointment will take only 15 minutes, you aren't allowed a pick up for at least one hour past appointment start time. So that 2:00 appointment time necessaries a 3:00 Pick up request which could end up being another hour for "promised" pickup time, plus another 1/2 hour wait time granted the driver. I know! Just think - instead of writing this I could have spent the whole afternoon taking advantage of one of the wonderful services provided me. I'm such an ungrateful bitch! That is Ungrateful whiny bitch to you! But, really, it's stressful, annoying and degrading. It's hard to be thankful sometimes. Time for a delightful happy hour drink!

human guinea pig

I'm always up for an adventure so I've scheduled myself to screen for an ALS  clinical trial (NP-001),  currently in its second phase on July 29th.  I always wanted to sign up for a trial to cure diabetes but the opportunity never presented itself as I was always too healthy.  Now, being reasonably healthy and relatively early into this new diagnosis should serve to get me in.  The diabetes doesn't automatically shoot me out of the running.  We will see.  I already rejected entering into a trail in which my neurologist is one of the primary researchers because it included a hickman port and massive doses of  antibiotics which could possibly damage organs.  Thanks, already got a disease that wants to mess with the organs so I'm not going to do something to help that process.  Let's try another tree to climb.

In the meantime, I'm just trying to live my life. Although my progress is slow - i.e., I'm not in a wheelchair and I don't need a feeding tube or help breathing yet I am weaker by the day.  I still seem completely normal unless you see me trying to use my hands or get up out of a chair or use my arms to lift anything or you talk to me when I'm tired and I start slurring like a drunk.  All things considered I'm wonderful.  All things being relative.

This summer, I passed on sitting in Central Park to get free tickets for Shakespeare in the Park because I knew the energy expended would cost me three days down but my wonderful bridge buddies kept up the tradition and the beautiful Miranda (BFF) gave me her extra ticket.  JP thanked me too because it meant he didn't have to go.  Measure for Measure - what a confusing play by the old Bard and the actor's choices, especially Isabella, were hmmmmm.  questionable.  But what joy to sit in the middle of Central Park, in a beautiful outdoor theater, with a full moon rising!  The evening was beautiful.  just in time as now NYC sucks the life out of you with its heat and crushing humidity.  I love my air-conditioning and may not leave my apartment - BECAUSE  I don't have to.

My life these days is devoted to friends, eating and drinking really tasty meals (with friends), yoga, acupuncture, Structural Integration, occasional gyrotonics and feldencries work.  Oh the joy - and what a life (too bad for these strings attached to my lifestyle).  Why are there NO studies on the impact of devoted bodywork on ALS?  mystery.....

 

Miracles

Miracles happen. If not today, perhaps tomorrow.

all thumbs

As it turns out those opposable thumbs are way more important than one would think.  From pulling up your pants, typing, picking up just about anything, and forget cutting that yummy steak - without our handy thumbs, these things become undoable.

social insecurity

My lawyer has been pushing me to call medicare to see if I'm entitled to anything.  Finally, I sucked it up and called last week.  Completely contrary to what I expected, I talked to a most lovely and kind woman named Lisa.  We soon established I didn't qualify for SSI special needs disability because I had more than $2,000 in my accounts, and I didn't qualify for medicare disability because I hadn't paid in enough over the last ten years.  But she said, with someone like me who had a previous strong work record where much had been paid in, they sometimes make exceptions.  There is sometimes consideration????  Wow, just the thought is wonderfully comforting.  Lisa filled out most of the application for me with instructions to fill out the rest online, and made an appointment for me to get a phone call from the local office at 8AM this morning for consideration of my case (saving me from having to actually go to the office- how nice is that?)  Wow, I was thinking this is not what I was expecting at all.  Then today.  Miss Bonilla called and asked "you want to file an application?" and after covering the same information as last week, she told me I didn't qualify because blah blah blah.  I explained what Lisa had told me last week, that I had been advised to ask for special consideration given my circumstances which just garnered me the same answer as before - nope, you don't qualify.   I then asked if she knew what ALS was and she said she'd never heard of it,   But, she did share that if I had end stage renal failure, or if I was a widow they might give me consideration.  Okay, that's great - ALS & end stage renal failure are two things in big print, all over the on-line application that direct you to CALL the office to continue, because these are things to get you fast tracked, but this woman know NOTHING about it?  Was it because I didn't call it Lou Gerigs disease?  Shit.  Obviously, I asked to speak to  supervisor.   She said she'd talk to the supervisor, came back ten minutes later and told me a supervisor would call me back  -  today, she said.  I asked about what time, telling her I things to do, but would rearrange if I knew what time, she said by 10am.  AND?  that's right, NO call all day.  And when I called the local office, I got disconnected four times.  So this is how it doesn't works I guess.  

Yesterday I went to pick up my Rilutec, the only medication approved by the FDA for ALS.  No one knows if it actually does anything, but statistically patients in trial lived 2-3 months more than those not on the drug.  The cost for a one month's supply was $954.00.  You read that right.  I asked the pharmacist was that really the cost for one month and with a steely, unfeeling grin said, yes, that's right this is one month's supply.  No I said, is this THE COST for one month - not a year?  there must be some mistake,  and once again said, with annoyance in her voice as if I were being a pain in the ass about five or ten dollars, again said, yes (with that big horrible phony grin devoid of humanity) there is a one month supply in this bottle and that's the cost.  Okay, it's Duane Reade and they are the worst drug store ever, full of assholes, but I couldn't believe a pharmacist, who presumably knew what this drug was for, would be so callous toward me.  She even said, with that icy smile, as she was walking way - do you have any other questions?  I walked out disgusted, verging on tears and who should open the door for me?  A beautiful radiant nun, who smiled at me.  I smiled back, thanked her and thought, thank you god!!!!!

Is it time for champagne?

When my biggest health concern was diabetes I would log onto the internet where there is a huge community of people with Type 1 diabetes.  It brought me comfort to read what others had to say, to take advice and to share experiences living with this stupid disease.  I didn't feel so lonely in the diabetes world.   I felt like there were people out there that understood, that had the same experiences I had with doctors and insulin reactions and eyesight issues and the fears about how high blood sugar would destroy all the organs.  I liked knowing I wasn't alone in that world.  The online community was the biggest revolution for me since blood sugar checking equipment and the insulin pump.

But today I am experiencing great bouts of existential turmoil.  Even though my friends and family are more than supportive, beyond fantastic, dearer than I could ever have expected, I feel very much alone.   I feel myself slipping, slowly, quietly, headed somewhere I don't want to go - someplace without much hope.  (Seriously, I don't need anyone to try and cheer me up - that's not what's called for in times like this.)  The ALS online community is very different than the one focussed on diabetes.  I go back to that community where I was so comfortable (although I wouldn't wish anyone to be a part of that either) and I think - my old friends have no idea how easy they have it.  This new community is filled with stories of people, bravely soldering on as they have vents and feeding tubes put in, as they are moved in wheelchairs and hoyer lifts, as they rely on others for everything.  They (we?)  are somewhere on the continuum of becoming immobilized, locked in - with minds that are still fully functional and aware.  It is not kind, it is not gentle.  There is no solution except the final one.  Is there some level in Dante's inferno for us?  BUT,  here's the weird thing - so many people in my new community focus primarily on the good parts in life - the connections with people with whom they share love and the other angels that help.   So I know my body is poised to give out on me, to fail me and betray me on a level never before imagined - but I also know my body will pass and the love I feel will always be there.  There is comfort and wisdom in this.  I've known this all along, but now it's the only thing I have left that I can count on.  I'm in unchartered territory.  We all are, it's just I have a front row seat.

I drink champagne when I'm happy, I drink champagne when I'm sad.  I don't know which I am right now, but it might be time to pull out that fine vintage bottle right now (and leave the cheap stuff for those who are spared this existential crap!)  Spread a little love today.  You will be glad you did!

Life happens

Last week, two of those in my core inner circle of friends got smashed with bad heath news.  The first - my dear friend David, who appointed me his health care proxy a number of years ago, called me early Wednesday morning to tell me he’d had a heart attack!  OMG!  So I ran up to his apartment, picked up a few things and headed to the hospital when my friend Kate called me to tell me the biopsy she’d had (I’d accompanied her to that procedure the week before) had come back positive for breast cancer.  OMG!  I promptly responded with the appropriate concern and sympathy and then asked, sweetly “what the hell is wrong with you guys?  get off my train! WHAT?  are you jealous of all the attention I’m getting????”  to which she promptly howled with laughter - which is always the best medicine.  Yesterday she and I went to the surgeon and heard the best news in a situation like this - tumor is tiny and not aggressive.  Whew!  And David -  he’s out of the hospital and will be fine as long as he takes on some lifestyle changes. I’ve named his cardiac event a Stent Sale.  Why are sales always called events these days anyway?  BTW, I am happy I can be of service to my friends as they have helped me so much.  As Kate says, we're all in this together!

The following was emailed to me yesterday.  I wish I knew to whom to attribute it but I don’t.  Hope you enjoy it.

"May today there be peace within. May you trust that you are exactly where
you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you.  May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

and from me - Try to remember - blessings abound in all circumstances.  xoxo sara