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

Stop motion

Check out this video on YouTube:

http://www.youtube.com/watch?v=_6drLmcca80&feature=youtube_gdata_player

Acknowlegement not advice please

I didn't go to one party this season and it was the right thing.  I did host several gatherings of favorite trusted friends for my birthday, Christmas, New Year's Day and a few other nights to capitalize on the season and share the spirit.  It was truly a tender and sweet holiday season.

I'm a very social person but the idea of seeing people I hadn't seen for awhile, or didn't know well, at some festive event, seemed untenable to me.   Being put in the position of either saying things were fine or the more truthful answer (the ALS bombshell) seemed like a no win proposition.  Still, I can't hide forever, and I am involved in a few different social circles so I decided to go the on-line social network route - email and facebook - to get this news out, let it absorb, so that it doesn't have to be the center of anyone's attention, or more aptly put - mine!  It can get tedious and trying to talk about.  I recognize this is big news but now if someone asks how I'm doing I don't have to have such a dramatic and exhausting conversation and we can talk about other things.  Less drama please!

In great measure, the response I have received has been unbelievably heartfelt and wonderfully touching.  The funny thing is, I can tell immediately whether someone has any idea about the ALS thing and its catastrophic ramifications.  I know everyone has good intentions, but honestly we know what the road to hell is paved with.  Maybe I should write - what not to say?  What to say?  A guide for the bewildered?  A few comments were a bit jarring, even if they were true, like  "we're all going to die someday"or, "hope you'll get better soon" or "you should check out coffee colonics."   Needless to say, I know everyone means well and I'm blessing them all for their thoughts.  Even those who can't respond - I get it.  But it makes me think about how, in this culture, we are so often not comfortable with talking or thinking about the importance of embracing all parts of life, including sickness and yes, death.

For years, because of my diabetes I've felt the tick tick tick and along the way had some serious losses (the intimate deaths of a few very close good friends, partial blindness, etc.), so I've dealt with the idea of loss & death most of my life and I am comfortable and grateful for the perspective it has given me because I think it makes living a bit richer and brighter.  The weird thing is,  I've passed so many milestones and been so successful in kicking the end off into the distance that this one in a zillion diagnosis brings my life into further focus.  Sharpened!  Again!

And what I think matters to me the most in my relationships is honest acknowledgement about all that life is about and that sometimes it is not great, and it shouldn't be.  Platitudes often fall far short of the mark - my "good" attitude will certainly help me, but honestly if you think it's going to cure me I think you're snorting monkey dust.  If you think I just have to live each day to the fullest what I take away is that you don't really want to enter into a real conversation with me - either the good or the bad, but why pretend?  Life is too short.  Just as we celebrate happy circumstances and occasions, we need to give pain and sorrow a place, but some people sadly are not up to it.  And that's okay, but I think when you don't truly acknowledge what someone else is going through, with compassion, then you're probably not allowing yourself to have those feelings either.  And that is sad. All I know is that things change, so when things are good they won't always be, and likewise, when things are bad that too will change.   But, we need to experience what we're going through and honest communication demands acknowledgement.  Otherwise we get stuck and that's not a good life.

I forgive ignorance, misguided advice, lack of acknowledgement and even for  complete lack of comprehension.  I know people wish me well and don't always know how to express it.  I'm going to take that positive energy and absorb it.  In turn, I'm going to work on being more generous with my understanding and compassion for people who are unable to step up because I know pain when I see it.

Buttons are a Bitch

I can't say I exactly love switching my passion for shopping to things for the disabled, but I do need a little help.  Dressing is getting to be a real chore (perhaps I'll go back to wearing nothing as I insisted on doing when I was three).  Buttons are a real bitch and I can see my future wardrobe with nothing but velcro, elastic and pull on and over clothes.  I'll look like the majority of tourists in New York City.  I might have to kill myself first.  But not yet dammit!

BAD THING


I found this button assister to be worthless.  Even Chuck had trouble with it:

GOOD THING  On the other hand, this grabber is a must have for everyone -  I'm going to order several more and pass them out as party favors: