On Mindfulness and The End of a Challenging Year

2016 was a difficult year for me -- at least until July 30.  Over Martin Luther King weekend I rammed my foot into a large box in my apartment and broke my right tibia.  Besides this event bringing to light my uncontrolled apartment clutter and the necessity of standing to keep up bone strength, the break kept me in my bed 23 hours a day for three months.  When I finally emerged feom my bed in April, I knew I needed to take care of a long-standing problem with a feeding-tube that had been installed six years before.  My GI doctor had been delaying removal of the tube; he was apprehensive about leaving me tube-less, despite the fact that I had been eating by mouth for the last ten years, and the tube was clogged beyond redemption -- and smelly!

So as soon as my leg healed and I was released from my prison sentence, I made an appointment with the reluctant GI MD to finally stand my ground.  First I saw my primary-care physician who agreed that it was time to take definite action, and advised me to go off my Xeralto [blood-thinner] for a few days before my GI appointment.  So on May 11, I rolled defiantly into my GI doc's office, and he tried to stall me again with the blood-thinner excuse; but I informed him I went off the blood-thinner several days before.  It still puzzles me that my GI doc and my ALS team were reticent to remove a PEG tube that hadn't been functional in at least two years and was reeking.  I said I needed the tube out NOW and out it came.  The tube before that one had come out about five years earlier and the hole closed up within a few hours -- which is why people with PEG tubes are told to go to the nearest ER immediately if the tube falls out.

What followed were four endoscopic procedures to close the hole -- which I was told was a RARE occurrence. Anyway, the last procedure was performed on July 30.  Until then, I had barely been able to leave the house for the amount of stomach acid and food that was pouring out from my belly, 5-6 dressing-changes daily and ruined tee shirts and bras, as well as the odor that I would take with me everywhere -- no sooner was I out of my bed from my broken leg than I was a prisoner  within the four walls of my apartment.  The weather was warming up and I was getting more and more frustrated.  My first trip to Rockaway Beach was in early August and I felt as if half my summer had been robbed from me.  Is the situation perfect now?  Not by a longahot; I have a "button" covering the hole and it still lsaking.  Nothing is perfect.

I learned some lessons in the past year.  I learned to be more mindful and even that it's okay to stare into space or otherwise just sit still and collect my thoughts.  I had a lot of time in bed to think.  I have learned not to take anyone at his/her word, but to watch what they do.  I have also learned that most people will not be honest with me because they are convinced that the weakness in my body translates into weakness of spirit; the opposite is true -- I am so much stronger emotionally than I have ever been.  But most of all, I learned that sometimes it's the ones closest to you that can hurt the most.  Most importantly, I have realized that we sometimes have expectations of certain people in our world to be there for us, but often those are the ones who are not.  And I am learning to live more in the present and to forgive hurts from my past [even though I am still paying for someone who hangs onto a perceived "offense" from 20+ years ago]  I have no plans for 2017 -- except to finish binge-watching all seven seasons of "Shameless".  I have suffered losses -- my beloved furry companion Chelsea on July 4, and two friends who ended our association with lame excuses which I saw right through [Facebook doesn't lie -- people can be really stupid or they think I am-- after all, isn't it a given that wheelchairs mean the person sitting in them are automatically of subhuman intelligence?]

WHAT I'M READING: "Out There: A Story of Ultra-Recovery"

Dave Clark is an amazing man.  Have you ever tried to lose a massive amount of weight?  Have you ever [or been close to someone who ever] kicked years of alcohol addiction?  Now imagine doing both of these things AND going on to run marathons!  David Clark did all three.  This book is nothing short of incredible.  David Clark was not only a successful businessman and entrepreneur, but also a loving family-man.  But he shows how easily addiction can lead a person who seems to have everything to bankruptcy and ruin.

What struck me about this story is the raw and uncensored narration of what got him to that spot of "rock-bottom".  Coming from an Irish-American family, he had alcohol around him from childhood at all family celebrations.  He also relates a young life of instability at the hands of a father who was forever chasing his fortune and the next best thing.  Eventually, his father's quest for an elusive American dream led David and his family to nightmare.  Whether it was an inherited addiction to an adrenaline rush or a sincere goal of providing his own family with the stability he never had,  Dave soon gets caught up in a spiral of wanting more than he already has, coupled with some bad luck and an alcohol-fueled drive to overshoot his bounds.  Overconsumption and poor nutrition leads to obesity and it all comes crashing down on Dave.

Clark decides from his place on the floor, to stop the drinking and get sober and healthy.  He finally gets through that first of the 12 steps -- to admit he had a problem and surrender to his powerlessness.  He only goes up from there; his mantra is "marathon" and he begins to run.  Nowhere does Dave blame anyone except himself for his downfall.  Sure, while he's drinking, he's in denial -- like all alcoholics -- saying things like "I'm Irish" or "I need a drink just to relax", but when he finally hits his bottom and decides to change for good, he knows he got himself into his mess and it's up to him to get himself out.

I am totally in awe of this guy who stops drinking on his own and puts in the work necessary to stay sober and get slim.  Those are amazing feats for sure; but then to become a marathon runner is icing on the cake.  If you want to get the "Wow" that I did,  from reading David Clarke's raw and honest story of rehabilitation, reflection and redemption, follow the link on the side of this blog to purchase "Out There: A Story of Ultra-Recovery"  from Amazon.

Why the TV Show "Speechless" is Important to Me and Should Be for Everyone -- Disabled or Not

WHAT I'M WATCHING:    "SPEECHLESS"  [ABC TV NETWORK]

People With Disabilities (PWDs) are the last marginalized people to gain respect.  We have made so many inroads in the developed, industrialized world with race, religion and sexual orientation and identification.  Many people and legislators still wish to lock us up in institutions and keep us out of sight .  Although there has been great progress in enabling PWDs to live in the community, we still have a long way to go.  If I didn't navigate the system the way I did, and push for transition to a self-directed care model [Concepts of Independence in my case], I would otherwise be living in an institution or getting care through an agency.  An agency controls everything -- when and where you can go-- and if you can go -- outside the home, and even whom they send to care for you [in some cases, with very little input from PWD or family]

"Speechless" is so important to me because it not only features an actor who really has a disability and shows that "speechless" is not synonymous with "infantile". The show also deals with the concept of "inclusion".  When I became disabled in January, 2004, I was shut out of activities by many able-bodied people, sometimes by inaccessibility of venues or lack of accessible transportation, but often by well-meaning "friends" who thought I would be uncomfortable around "normal" people.  Sometimes I am invited, only to be invisible-- left out of the conversation or even ignored or stuck in a corner by myself.  This show should be watched by everyone, especially by misguided people who have told me "Maybe there's a group or club you can join that's more for people 'like you' " [this was actually said to me more than once].  Get out of your comfort zone -- watch it; it's actually funny.  I give you permission to laugh.

"Speechless" features a family with an adolescent with Cerebral Palsy. There's a mouthy mom-- Maya Dimeo, who is a flawless advocate and played brilliantly by Minnie Driver.  She is the perfect advocate for JJ, even pointing out when well-meaning gestures are insulting.  In the first episode, she asks for a ramp so JJ can get into his school and she goes on a rant when she is led to a ramp which also doubles as a trash conduit.  I can relate to this, since often when I ask for a ramp, I am led to a rear door alongside trash and service entrances.  In my own residential building, I haven't seen my lobby in at least 10 years; I have to enter and exit through the basement.  Especially in older buildings that have been retrofitted, we are segregated.

I love when my caregivers and friends speak up for me in the face of injustice.  Despite my inability to express myself clearly at the moment of impact, I have learned the fine art of patience and diplomacy in protesting after-the-fact.  I write letters and emails, and make relay calls.  I used to shoot off my mouth at the moment of the injustice.  That proved to be ineffective at times and even counter-productive, since tempers are often high at that minute and I tended to say harsh things I sometimes later regretted.  Also, sometimes the person you yell at, isn't the one who can make a change and sometimes is a lower-level worker who isn't very educated in discussing protests in a civil way, especially in the middle of his workday.  And even more likely, as in the recent case of a friend arguing with a paratransit driver, you find yourself in debate with a recent immigrant whose English language skills are not the best and/or can't or won't take direction from a woman.  

But in "Speechless", Minnie Driver is a funny angry person and shows how we can laugh at a life that can also be referred to as a tragedy.

Book Review: "Life Through Lasagna Eyes: The Recipes for Life" by Samantha Kendall

There can be no greater loss than for a mother to bury a child.  And I think there can be no pain greater in losing a child, than losing a child to a senseless act like shooting.  Reading Samantha Kendall's book, "Life Through Lasagna Eyes: The Recipes for Life", I couldn't help thinking about all the senseless gun violence in the United States today.  When I picked up this book, my first thought was dread, in anticipation of a narrative of one more news story. But Samantha Kendall handles her telling of an unspeakably sad event with dignity, strength and even humor.

Although Ms. Kendall dedicates her book to victims of gun violence, she doesn't make "Life Through Lasagna Eyes" only about her pain and suffering.  Instead, it is the backdrop for a bigger message: to use her passion to honor her daughter's memory and become a successful entrepreneur. The most valuable lesson of her book is how Samantha found meaning in what was a meaningless tragedy.

She is now known in Chicago as the "Lasagna Lady" and followed a message uttered by her daughter Amanda from her hospital bed before she passed away.  Amanda loved her mom's lasagna, and so it was through her lasagna that Samantha drew inspiration to work out and work through the incredible grief of losing her child to violence.  The pasta that form the layers of the lasagna represent the layers of our lives; the cheese symbolizes the substance that holds the layers together; the sauce is the topping that completes the lasagna before baking and eating, and of course there is the all-important meat.  Samantha's faith and her passion for cooking turned tragedy into triumph.

Mourning the End of Summer: Sand in My Shoes

 My late mom's favorite season was Autumn; unfortunately, I never shared that sentiment.  I have always had sand in my shoes.  I was born in Brooklyn, and both of my parents grew up on Coney Island.  I was taken to Coney Island in the summer to join my extended family -- mostly from my Dad's side [my maternal relatives are Austrian with fair skin and prone to sunburn] but sometimes we would be joined by my mom's Coppertone-slathering, umbrella-sheltered family.  Somewhere in my dad's house are black-and-white childhood photos of me in a one-piece on a beach blanket and home movies converted to a cassette[sadly VCR -- not yet put on DVD] of an iconic 50s me with white ice cream from a melting pop dripping down my face, and a confused "I can't lick fast enough; what am I gonna do?" look of total perplexion on my face.

Later, when we moved from Bensonhurst to Sheepshead Bay in Brooklyn, and my paternal grandparents moved to the Nostrand Projects right on the next block from the Sheepshead Houses [an adjoining NYCHA "project"], we frequented quieter Manhattan Beach.  Manhattan Beach wasn't in Manhattan; it was on the same strip of Atlantic Ocean as Coney Island to the east.  It was quieter and wasn't "bad" like Coney Island was starting to become.  "Bad" was another way of saying that there were increasing numbers of people of color -- African-Americans and Puerto Ricans [back then, anybody who spoke Spanish was Puerto Rican]. 

When I was 11, we moved to Long Beach, Long Island and my fate was sealed-- I would forever have sand in my shoes.  I studied for my end-of-year New York State Regents exams in the sun on a beach blanket.  My teenage years were filled with beach bonfires and all kinds of beach parties.  I told my mom I wanted to one day have a wedding on the beach with all the guests in flip-flops; she replied that I was a crazy hippie.  When I was deciding on a town in France to spend a summer studying and perfecting my French, it's no accident that I chose Boulogne-sur-Mer on the English Channel, where I attended classes in the morning and headed for the beach every afternoon.  My foray into living out of state was a four-year stint in Los Angeles, never far from a beach.

Lately, my beach stomping-grounds has become Rockaway, Queens, New York.  A once-bustling, then-crumbling stretch of the Atlantic which is part of the New York City beaches.  Rockaway is reachable by subway and MTA bus, and -- like all the city beaches-- free to visit.  An interesting thing happened after Superstorm Sandy; Rockaway experienced a revival of sorts, largely thanks to a huge contingent of young hipster artsy types from Brooklyn and Manhattan.  

                                                    My favorite Rockaway "poison" -- a Michelada which is a Modelo
                                                                Mexican beer with lime, clam juice and tomato juice in a glass rimmed
                                                                 with coarse salt and spices.  On the plate is ceviche [raw fish "cooked"
                                                     in lime] over a disc of quinoa




We accidentally discovered 97th Street after I read an article online about fish tacos being sold near the Rockaway boardwalk, and immediately was brought back to fish tacos I lunched on every day on a trip to Ixtapa, Mexico in the late 1990s.  I dragged my friend Louise one afternoon on a mission to Rockaway Tacos and discovered our new beach obsession.  That was late July, 2014 and we went back every weekend for the remainder of that summer.  And during Summer, 2015.  This 2016 summer, I was robbed of my July, dealing with my endoscopies and belly-hole issues when it was tough to leave the house.  The 97th Street boardwalk has become my second home, along with the Low Tide Bar and all the various food concessions that serve up everything from ceviche [fish cooked in lime] and pierogies to BBQ pulled pork and veggie juices.  And the most wonderful thing is the beach "mats" they lay down so that wheelchairs can go partially on the sand.  And I read [although sadly I don't have anyone willing and able to help me], that you can rent beach wheelchairs [with big wheels] that someone can push me in, on the actal sand and in the water.  Yes, I need someone young and/or strong who is willing to help me rent this and push me. 

I am dreaming of a permanent or even semi-permanent [summer] home/rental in the Rockaways.  I am determined to make something like that happen.  For right now, I am mourning the summer and trying to make my fall and winter productive enough to make some dreams come true for next year. In the meantime, let's hope for no broken bones, nor belly holes spouting stomach acid or half-digested food. 

Followup on Views About Assisted Suicide and End of Summer

So I posted the story on Facebook that I talked about in the last blog update. To recap: A woman with ALS threw a big [arty for 30-some-odd of her closest friends and then went through a doctor-assisted suicide [which was recently legalized in California].  Granted, she was a performance-artist and it's not clear from the article which abilities she had lost.  I'm sure if she lost use of her hands, she probably didn't see the use in going on.  I could count a hundred-and-one things I had to give up when I got this disease.  Anyway, it's a controversial issue among the disability community.  But I can't go into that.  But what I can attest to, are the commentas on my Facebook posting.  This is in an atmosphere of full-disclosure because everyone knew that I posted it, and they knew my situation.  Most people thought the woman in the article was brave to do what she did.  A very old friend of mine commented with food for thought: he said that good friends should be around the person with the disease all throughout, and not just show up to party with her to say thei goodbyes.  I agree with him, but on the other hand, at least they partied with her while she was still alive and not just show up to cry about how much they will miss her when she's gone.  Another old friend expressed in so many words that I was "brave" for going on and fighting, but she would have wanted to die.  In other words, I wa shocked at how many people basically feel that they would rather be dead than in my situation.  Which leaves me very grateful that -- despite all the pain I have been through -- I have managed to find joy in a world of ABILITIES, rather than buy into helplessness.  I know I have some people around me that have bought into my perceiveed in-abilities; the invitations don't come anymore and the attempts to socialize have all but disappeared except for a few exceptional people.  There are discomfiting looks when I mention traveling and sex, even though disabled people travel all the time, and even have sex.  I have re-connected with a gentleman from my past to whom I am extremely attracted; the looks on friends' faces when I mention this, show their awkwardness.  One friend said she didn't want me to "get hurt".  Was she so concerned when I was able-bodied?  If anything, I am so much stronger emotionally than I ever was in my former life.  Another friend says she "censors" her talk because she doesn't want me to hear about anything happy in her lefe; other friends tell me that they don't want to tell me about thir probems, so as not to "burden" me.  This last subject was another way to see how other peoples' minds work, and I must say I am sad for them and I hope they never have to deal with half of what I do.  I realize how many people around me are weak and even ignorant.  Society has to do a better job of preparing people to deal with people like me,  Just sayin' 'Nuff said.

Anyway, the end of summer has set in, even though I will continue to go to Rockaway Beach as many weekend days as possible through September.  We don't even have to go into the water, or even on the sand; we just bring reading material.  Our base has become Beach 97th Street on the newly-rebuilt boardwalk.  Rockaway took quite a hit in Superstorm Sand, as did my hometown of Long Beach.  Both towns have rebuilt their boardwalks, which were destroyed.  Long Beach's boardwalk was reconstructed by funds raised largely by hometown boy Billy Crystal [the comedian/actor -- he was a baseball star at my school who graduated the year before I entered high school -- his older brother Joel was my middle-school art teacher]  Rockaway is a New York City beach.  For those of you who have never been to New York City, we have beautiful city beaches along the Atlantic Ocean, and they are all free. These boardwalks are more like cement-walks now -- the old wooden boards are replaced by more sturdy material that will be better able to withstand bad storms.  In the Long Beach Library, I was always mesmerriaed by photos of the old boardwalk constuction in the early 20th eentury, especially the pre-PETA photos of the use of elephants to transport the heave wood boards.

Rockaway has gone through a resurgence of sorts.  Once a burgeoning vacation community in the late 19th century and early-to-mid-1900s, it fell into ruin and decay by the late 1960s.  Rockaway Playland Amusement Park closed in the 1970s and the ummer bungalowa were rented out year-round to very poor families.  Most of the other families were blue-collar workers of Irish descent; in fact, Rockaway families suffered many lossses during the 9/11 attacks because there was suck a large concenetration of police and firefighter first responders.

 In the top photo, you can see ceviche [raw fish "cooked" ibn lime] on a disk of quinoa with seasonings.  Very delicious and healthy.  In the cup is a drink called "Michelada".   This is a popular drink at Mexican resorts.  They rim the cup with sea-salt and hot pepper and pour in tomato and clam juice.  They then pour in about 1/2 a can of Modelo beer and you just keep pouring in the rest of the beer as you drink down.  It's delicious and refreshing and also has plenty of ice.  It's kind of like a beer version of a Bloody Mary.

I am not clear about when Roclaway suddenly became cool and hip, but I suspect that Superstorm Sandy had something to do with it.  One summer afternoon last July, Louise and i saw an article online about a place specializing in fish tacos and decided to check it out.  For some reason, that part of the boardwalk was intact so we wandered on.  Once on the boardwalk, we discovered an additional structure of food outlets and they were serving up cuisine beyone hotdogs and burgers and fries.  There was a juice bar, several outlets serving up cevicjhe [fish cooked in lime -- Latinos' answer to sushi], BBQ and other delicacies.  The people hanging out there seemed to be young hipsters and their babies.  There was an eclectic blend of music playing and we felt very much at home.  It was already the end of July and we made a point of going there every Saturday through to the end of September.  I havd always had sand in my shoes and live for Summer.  Rockaway has become my second home in the summer.  I'm a sucker for the salt air and the sound of crashing waves,  I've had many kisses on the beach; it is the stuff of all my dreams.  I always dreamed of getting married on the beach, nd refuse to let go of that dream.  I see a lot of raised eyebrows and hear a lot of tooth-sucking in pity.  Nobody wants to see me "get hurt".  I can still fall in love and I can even have sex, although my partner would have to be patient with helping me move my body into position.  I'm not ready for assisted suicide as long as there are beaches.

Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in Califiornia

A number of people have forwarded this article and video to me  
Anyway, let me summarize:

A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life.  She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law.  California now joins Oregon in allowing doctor-assisted suicide.

Betsy Davis -- the woman in the article -- looked vibrant and still beautiful.  Who knows how much longer she would have had if she didn't die when she did?   I thought of where my head was at,  three years after diagnosis, and I was pretty despairing myself.  My disease had progressed pretty fast in the first few years.  I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible.  I am blessed with the ability to use my hands, which enables me to use the computer, if not,  keeping me from dropping a lot of things.  At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here.  Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate.  Who knew my progression would slow down almost to a standstill?  I have been very lucky.  If I chose doctor-assisted suicide at that point,  I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.

And then there is that word -- "suffering" -- which has been repeated a few times in the article.  Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term.  Am I suffering?  The short answer is yes -- sometimes.  Did I suffer before ALS -- I would have to answer a louder and more resounding yes.  I despaired after broken relationships, broken bones, lost employment, deaths of loved ones.  I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on.  I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die.  If New York had a law legalizing doctor-assisted suicide, I could have ended it right then.  I could move to California or Oregon and do it right now.  I choose not to -- right now.  I can't speak for anyone else.

Without getting into religious beliefs, we all have choices.  Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children?  I once knew  a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance?  Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds.  I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.  

Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident.  She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived.  "Better dead than confined to a wheelchair" she added.  I cringed because I knew sooner or later I would be reliant on a wheelchair myself.  Does she think I am better off dead now?  I don't know; I don't think so.  If I reminded her of what she said that day, I'm sure it would embarrass her.  Who knows if I would have agreed with her a decade before?  We all live in our own little worlds and sometimes never imagine what could happen.  When we think we could never go on, we do.  Ronald Reagan was aganst stem-cell research so I'm told.  Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.

My party of goodbyes has happened more gradually over 12 1/2 years.  In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye.  I had friends and family who came by often and stopped,  either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation.  And I am thankful for some people I would never have met and gotten close to,  if I hadn't had ALS, and for the people who stuck by me all the way.  It's true that in times of difficulty, you find out who your solid friends are.  I had hundreds of people in my life because of my two careers and my volunteer activities.  By necessity, I have weeded out a lot of toxic people.  I don't need a party and for now I choose to hang out a while longer.  

Probably the most important reason I continue to thrive is my care.  I not only still live by myself in my own apartment but I am able to hire, fire and schedule my own personal assistants through a system called "CDPAP -- Consumer-Directed Personal Assistant Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CD-PAP all throughout the state of New York and in some other states as well.  This not only keeps me out of a nursing home, but relieves me of the constraints imposed by many home-care agencies -- like sending strange aides at their whim and even restricting how far away from home they are allowed to go with their consumers [patients].  I have had the same four aides for a decade or more and they are like family to me.  They cover for each other in case of illnesses, vacations and emergencies.  If not for CDPAP, I am sure I would feel differently about my situation and the will to go on.

Endoscopic Procedures #2, #3 amd #4,Trying to seal my abdominal PEG site fistula, and a saga to try my sanity

So I would like to say that my first endoscopic procedure on June 30 to stitch up the fistula left by my PEG removal, was a success. I would like to add that six weeks of disgusting and smelly emanations had finally come to an end, and I could start the enjoyment of my favorite season of the year.  But, if you read the title of this entry, you already know that I can't say any of those things,  and so, by July 2,  I was once again a very unhappy camper.  Oh sure, I was doing the "happy dance" until about the morning of July 2, when I realized that the oozing site was more than just a healing process.  I emailed both of the GI doctors in despair.  I had no intention of repeating the uncomfortable experience again.  My throat was sore from having a tube going down it,  into my belly.   And contrary to the anesthesiologist's promise that I probably would remember little to nothing that happened on that table,  I remembered everything.

So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat.  Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember.  So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat.   When I came home, my throat hurt as much as my 1986 bout with strep,  during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop.  Well, after two days, the throat pain subsided, but the leak resumed.  The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"

So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3.  I figured if I had survived the first two, I could survive a third.  I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars.  She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times.  This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that.  I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp. 

The doctor was confident that the third time was the charm.  And it was -- for two days.  So we could be doubly sure the stitches would hold,  this time I stayed on clear liquids for the rest of that day and liquids the whole next day.  After a 2-day fast, my body was not good at accepting solid food again and the third evening,  I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch.  Before long,  I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times.  There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again.  My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.

So, having not been as traumatized after #3,  I was ready for #4.  But this time, I was told the two GI docs were putting their heads together and "thinking outside the box".  Uh-oh,  I thought,  now we're getting creative!!  The next day I was presented with two possible "solutions".  One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button".  Both devices would have something showing on the surface of my belly;  the cardiac device would be flatter,  and the Mic-key would have a piece protruding about 1cm [roughly a half-inch].  The downside of the cardiac device would be its permanency -- it could never be removed.  In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]

On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure.  Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am.  We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet,  but Au Bon Pain was.  So Cheryl was able to have a cup of coffee.  The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!

The doctor showed me the Mic-key button and indicated which part would be above the belly.  I approved -- what else could I do?  This time, they managed to sedate me enough that I didn't remember a thing,  Miraculously,  there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch.  So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever.  Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.

Is it perfect?  Not by a long shot.  I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks.  But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops.  I can leave the house and wear shirts and blouses pretty close-fitting.  For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly.  And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.

Endoscopy to Close PEG Tube Site-- Call me "Deep Throat"

So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site.  To recap,  had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow.  In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia.  In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010.  By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site.  It was also ruining my shirts and blouses with stains and emitting an offensive odor.  My GI doctor and I decided it was time for the tube to come out and let the hole close up.

As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed.  Well, mine didn't closeup, much to my chagrin.  My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed.  Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.

I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge].  We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer.  Then we entered the Endoscopy Suite inner sanctum at about 12:15.  The nurses were all cheerful and pleasant.  Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in.  My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team.  They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar.  They would go with a lighter anesthesia and shoot albuterol into my throat to numb it.  I would be awake during the procedure but probably not remember much.

Well, I remember everything.  It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern.  Good job!!"  I'm not clear what the "job" was, except not passing out and not screaming.  All I know is,  I was relieved when I heard them all tell me we were done.

The aftermath was a sore site which bled a little and a very sore throat for about three days.  Oh, and I lost my voice for about the three days that my throat hurt.  All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now.  It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles.  I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content.  Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.   

It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined.  And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].

PEG Tube and -- Removal of a Faulty PEG and Leaky Hole in My Gut

I have been at the height of frustration, anger and depression for more than a month.  I have had a faulty PEG tube that needed to be removed due to leakage and I had to keep putting off its removal over roughly an eighteen-month period.  My gastroenterologist and I made the determination that the leaky and clogged  tube needed to come out.  Not only could I no longer use it if I ever arrived tothe point where I could no longer swallow, but the site wasleaking t
A PEG tube [Percutaneous Endoscopic Gastrostomy] is urged by doctors for ALS patients to get early in the disease.  Risks from anesthesia increase as the disease progresses, and especially as respiration deteriorates.  Eventually, an ALS patient has problems swallowing and the PEG is often placed earlier rather than later as a precaution, whether or not it is needed at that time.  The patient can eat by mouth even when the tube is there.  In my case, I had a tube placed in 2005,  a year after diagnosis.  At the time, I was totally able to eat by mouth.  But it was suggested to me by the ALS clinic, that it was a good idea for me to tube-feed as a way to conserve energy.  So I put cans of formula in my tube, only to find that the whole pleasure of eating was missing from my life.  Furthermore,  the more I became knowledgeable about nutrition, the more uncomfortable I felt about a substance that was full of chemicals, and over which I had no control.  Yes, it uses up energy to eat solid food -- using utensils, chewing, swallowing, etc. -- but I made that choice.  At that point also, my disease seemed to be progressing so rapidly that I wasn't ready to give up food before I absolutely had to.

My progression slowed down and 2010 rolled around.  At that point, the PEG had been in for five years and was getting old and weak.  I had changed ALS clinics and they referred me to a different gastroenterologist from the original one.  Although I had heard that this PEG could be removed and another one placed in the same opening, the replacement wasn't a success and I was told I would need to go through a second endoscopic procedure.  Now, this is IMPORTANT:  if a PEG tube falls out, the patient MUST GO to an emergency room IMMEDIATELY [if not sooner] because the hole starts to close up IN A FEW HOURS!!  So one morning, the tube that the doctor had replaced for my old tube,  fell out as I was getting dressed.  This was not a surprise because the gastroenterologist already said he would most likely have to make another hole because the original one was "not good anymore" [whatever that meant].  So, while I was sitting at the edge of my bed looking at my fallen-out tube, I knew in my case, that I wouldn't go to the ER and so I let the hole close up.  But I will repeat this: when a tube falls out and you have any intention of having another PEG placed in the same hole, YOU MUST GO TO THE CLOSEST EMERGENCY ROOM IMMEDIATELY because the hole will close up starting in a FEW HOURS and will usually be TOTALLY CLOSED WITHIN A DAY.  This previously-stated information is going to figure into my telling below of what is happening to me in the present moment.

Fast-forward to the year 2014.  My tube that was placed in a whole new opening via endoscopy in the fall of 2010 [the year the replaced first tube fell out] had been giving me problems for a long time.  It was so clogged that water flushes were unsuccessful.  Moreover, the skin on my abdomen around the tube [called the "stoma"] was constantly irritated and inflamed by a leakage of stomach acid.  And even worse, the stomach acid emanated an odor that no perfume or body spray could cover.  And --if that weren't bad enough-- the gauze around the tube was no longer absorbing the ever-increasing amount of acid leaking out of the tube and onto the stoma, was now seeping onto my shirts and tops.  Soon, my aides were dividing my tops into two distinct categories -- "house" shirts and "going-out" shirts.  As you can imagine, with time, the "going-out" shirts eventually made their way one-by-one to the "house" shirts collection.  And after a while, I would have nothing clean and unstained enough to wear for going out.  When I went to the annual Wings Over Wall Street fundraiser in October, of 2015],  I sent one of my aides [Ellita -- whom I call my "stylist"] to the local Dress Barn, where she managed to pick out a lovely outfit of skirt and top fit for a "dressy after-work attire" function.  Needless to say, I came home with a stomach acid leak on the blouse.  As I write this, I am wearing an old ALS Walk tee-shirt with no bra.  My bras I have reserved for rare times when I leave the apartment for medical appointments in the last few days when I don't want my "girls" to bounce with no support [not a good look].  Yes, my second stoma is high enough to wet and stain my bras. 

Fast-forward to  Summer of 2014 when I see my gastroenterologist [GI Doctor] and we both agree that this faulty tube has to come out.  In the fall of that year, I was hospitalized for a DVT blood clot in my left leg [see my blog entry of December 8, 2014] , followed by six months of having to take a blood thinner called Xeralto.  In order to remove the faulty tube, I would need to stop the Xeralto.  So, there goes a six-month period where I had bigger fish to fry than this tube site. Then, after going off the Xeralto in the summer of 2015, it was a few months later that I ended up in the hospital again in October, 2015 for a recurrence of a DVT blood clot.  [see blog entries for To this day, we don't know if the cardiologist was mistaken when he cleared me in June, 2015 free of blood clots and able to stop taking Xeralto.  So when I got out of the hospital, we were coming on the holiday season of 2015 and I knew I needed to stay on Xeralo for several months.  Then, at the beginning of 2016, I was laid up in bed for three months with a broken tibia and my faulty tube was once again relegated to a back burner.  Now, finally on May 11, thet ube was removed and as of a full month later, itis still  gushing out food and stomach acid, ruining all my shirts and bras.  

Two weeks after the tube was removed and still gushing, one of my aides told me this was all ridiculous, and was getting out of hand.  She told me that not only did I reek of a sour odor, but my entire apartment reeked  and when she walked in from the outside, it  hit her like a lead balloon.  We went to the local emergency room of Northwell Health Forest Hills.  I texted my friend Nancy and she came to the ER to meet me.   There was a really nice [and cute!] doctor there who consulted with another doctor. He concluded that this stoma was never going to close by itself.  And this is not something you can just put a few stitches at the top because it goes deep into the gut.  A surgeon has to stitch it up from inside; so I freaked out at the thought that I might need surgery!  My breathing is bad enough that anesthesia presents a terrible risk.

A desperate email to my GI doc and his PA [Physician's Assistant].  I was panicky.  My GI doc said there were less invasive procedures we could try and he gave me an appointment the following week to talk about it.  At the appointment he explained that I probably wasn't healing because the stoma [hole] was forming scar tissue and so wasn't closing up the way it should.  So we scheduled a procedure that involved putting an abrasive substance inside the hole to open it up again and form new raw skin that could then heal and form scar tissue where it needed to form and close up the stoma.  In order to do this, I would have to be off my Xeralto [blood thinner] for four days before the procedure and a few days after.  So I went back for the procedure a week later and stopped the Xeralto four days before and stayed off it several days after.

Where am I now?  Well, I haven't been out of the house -- except for doctor appointments -- since the tube was removed on May 11.  I have been in the apartment with frequent dressing change, no bra because the bras have been badly messed up.  I could smell the odor around me so -- along with my bralessness -- I was not really fit to go out.  My birthday was June 7, and I was supposed to go out that evening for dinner with my friend Louise and I had to take a raincheck.  When my friend Nancy heard that I would be sitting home, she brought me sushi from one of my favorite restaurants.  She made an otherwise depressing birthday very festive.  Two nights later, Louise brought Asian food over from a very good neighborhood restaurant, and banana pudding from the famous Magnolia Bakery in Manhattan.  I have dinner plans with two other friends at the end of the month and wonder if I will have to delay those outings too.  I don't know if this latest procedure will work.  If it doesn't, I will have the endoscopic procedure to stitch the stoma from inside my stomach.  That will have to be scheduled soon because with my winter and spring relegating me to stay cooped up, I refuse to ruin my favorite season of the year -- summer.  In the meantime, I am breaking the bank with purchases of 4x4 gauze pads, tape and other supplies for my dressings, which need to be changed a few times a day.  Not to mention that all my tee-shirts are forever ruined. along with some nicer shirts.  I can't go shopping for new clothing until the hole closes up, either by nature or surgery.  Until then, I remain frustrated and angry, with a serious case of cabin fever.

Tibia mostly healed, Physical Therapy, out of bed, foot blister slowing up recovery, sadness and loneiness

Well I am out of bed and I would like to stay out of bed, except for sleep time, that is.  I am reading that it takes up to a full year for a tibia to fully heal, but three months to be able to bear weight.  After two months, my orthopedist gave me a boot to put on, but I couldn't stand with it.  Something was going on with the bottom of my right foot [the side of the fractured tibia], but I didn't know what it was.  Well, I was distraught thinking that I still couldn't stand and in the back of my mind I thought maybe I would never be able to stand again.

The next morning, the aide on duty went to clean the bottom of my foot and noticed a blister, right in the spot where the cast ended. So it seems that the rough edge of the cast was apparently rubbing against the skin.  I had an appointment already planned that week with my primary doctor and she looked at it, told me to see a podiatrist, and gave me a light antibiotic in case it was infected.  The day I finished the antibiotic, I saw the podiatrist who said the blister was not infected despite th pain and there was nothing serious doing under the blister.  But it would take a few weeks to heal.  He lanced and drained it and I had weekly visits for the next month until it totally healed.  Needless to say, I was in bed an additional month.

Finally, I am standing almost as well as I did before the injury but I have home physical therapy to exercise the leg to strengthen the joints around the tibia like the ankle and knee.  When you're in bed for more than three months, the muscles atrophy and have to be "woken up" again.  All in all, I was lucky that this happened during the cold winter and apart from doctor visits, I didn't have to go outside.  Going outside for the doctor was difficult, since my toes were exposed and sticking out of the cast.  One time, we missed Access-a-Ride because we were fighting with a too-small elevator coming out of the orthopedist's office.  There was no courtesy phone call; she just pulled away right in front of my aide.  And when the aide ran after and caught up to her at a red light, she [the driver] refused to come back around or wait.  So we walked from 66th and Second Avenue to 60th Street to catch the Q60 MTA bus and my toes froze.  Luckily we were near the Q60 that goes from Manhattan to Queens.  But then we had to walk/roll from the bus stop to my apartment, toes exposed again.

There's nothing that gets you thinking and reflecting more on your life than being stuck on your back in bed.  And there is nothing lonelier. I really found out who my friends were and they were few, but I consider myself lucky.  More on that later.  I also have certain emotional addictions [more like obsessions] that reared their ugly heads during this time, and I had to pull myself off social media in order to not feed into those addictions.  Social media can be very dangerous for me, especially when I can see the wonderful fun other people have and how they are surrounded by loving friends and family.  Not that I wasn't lonely in my healthy able-bodied days, but I could get out and do something about it.

Month three of broken tibia and blister woes and wheelchair cushion problems

So it's coming in on the home stretch of the three months of recuperation from my tibia fracture. I enter to my two month follow up at the orthopedist and he removed the shorter cast? Which went below the knee. This was an improvement on the first cast, which went well above the knee so imagine my delight when they cut off the second cast and gave me a boot thing aka soft cast -- and told mr I could stand using this new improvement. I couldn't wait to get home and do all the things that the ability to stand, allowed me to do.

That happiness was short-lived, however. I tried to stand and the leg with the broken tibia produced the most blood-curdling yelp when I tried. Something was going on with the bottom of my foot and it wasn't good. Was it something wrong with the bottom of the boot? I had no idea. Not to mention that the good leg wasn't perfect either. You see, after two months of lying in bed, my muscles had atrophied and needed building up again. I realized how important it is for me to have physical therapy. Suddenly, my aide looked at the bottom of my foot and saw a huge cyst-like blister.  Oh hell, I thought. Great!! I happened to have an appointment with my internist a few days later and she looked at it and said it seemed infected nd gave me a one-week round of Amoxicillin.  She doesn't like to give antibiotics recklessly and for that I love her.  So I loaded up on probiotic capsules and drank kombucha to compensate.  And I made an appointment with Aadvanced Foot Care, who had solved my plantar fascitis many years ago.  The podiatrist determined I didn't have an infection, but a pus-filled blister.  He lanced it and told me to put bacitracin on it and see him in a week.  It improved but still hurt.  I went yesterday again and he said I could try putting my weight on it.  So when I came home and had to use the commode, I decided to try.  My aide had trepidation, but I did it!! It wasn't great and my leg muscles have atrophied somewhat with three months of bed-rest.  I have a prescription for physical therapy to help me build the muscle, and I also found a website with exercises for a post-fractured tibia.  I have to decide if I want to go outside for PT or have home PT.  I have had both and each has its pros and cons.

Then there is my wheelchair cushion.  When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important.  An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities].  I recently got a Roho cushion, which has waffle-like compartments filled with air.  It has to be regularly inflated to ensure enough comfort.  Well, one morning, we found the valve on the floor; it had come off the cushion.  A Roho cushion that cannot be inflated is useless.  In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable.  So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion.  I thought about buying a standby extra cushion -- $350.00 -- I don't think so.  The ALS Association will come to my rescue some time tomorrow with a loaner cushion.  Their loan closet has saved me many many times.  One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks.  A real pain!!  Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed.  Instead,  I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT].  Below is a picture of a Roho cushion.  You can see the "waffle" air compartments.  It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores.  It is great for old folks who might not have a lot of butt padding and compromised back muscles.

CALL TO ACTION!!

TAKE ACTION!

 

Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!

 

Call 1-866-220-0044.

Ask for Senator Murray from Washington State's office.

 

Say:

“Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”

 

 

BACKGROUND

 

It’s a travesty that we can address! A quarter century after the Americans with Disabilities Act (ADA) was signed into law, people with disabilities – including young people – are still trapped in nursing facilities and other institutions. To address this injustice, Senator Schumer (NY) has introduced the Disability Integration Act (S.2427). This legislation will require states and insurance providers that pay for Long Term Services and Supports (LTSS) to provide community-based services first and offer HCBS to people currently in nstitutions. This legislation has broad-based support in the disability community from over 300 organizations across the country.

 

The proposed legislation says:

"No public entity or LTSS insurance provider shall deny an individual with an LTSS disability who is eligible for institutional placement, or otherwise discriminate against that individual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life."

 

The legislation would also make it illegal for a state and insurance providers that pay for LTSS to fail to provide HCBS by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses which states have used to keep people from living in freedom.

 

You can learn more about the legislation here:

www.adapt.org/main.diamain

www.disabilityintegrationact.org

 

The full supporter list is available at:

http://www.disabilityintegrationact.org/dia-supporter-list

TAKE ACTION NOW!

 

Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!

Call 1-866-220-0044.

Ask for Senator Murray from Washington State's office.

 

Tell them: “Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”

 

THANK YOU!

 

 

My Life Mostly in Bed [Cleaner Than it Sounds] With a Broken Tibia

I have now spent my first month mostly flat on my back in bed.  Unfortunately, this isn't as fun as it sounds.  I am sadly alone while in bed -- what a waste!!  But I have to spend at least another month in this position -- and sadly alone.  I went for my one-month followup with my orthopedist Dr. Radnay and he is pleased with the way my tibia is healing, but not confident enough to let me go cast-less yet.  So I have graduated to a hard cast which stops below the knee; this is a slight improvement on the hard cast I had going past the knee.  At least now I can bend my right leg at the knee -- for what it's worth.  I still can't get into a shower and wash my hair.  Trust me -- dry shampoo doesn't cut it, and for reasons I will elaborate further below, it's not really practical yet for me to go to the salon to get my hair washed.

First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg.  And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can.  This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment.  I can't go tootling around the neighborhood, especially in cold weather.  My right foot is exposed and I don't have a sock big enough to go over the cast.  Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement.  When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground.  So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement.  Another accident is just what I don't need.

I also have to ask for every little thing I need.  Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table.  But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard.  So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table.  They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table?  I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard.  And, for the best possible position, my head has to be far back to the top of the bed.  I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed,  I can sense their pain.  The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.

Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes.  In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together.  I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate.  Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit.  Who needs a man? [although a man would be nice too].  And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded.  On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder.  I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet 

There is a good reason why I have more room in the apartment, and I will give more details next time.  Right now it's time for me to go back to my bed where it's difficult to type. Future projects:  paint the apartment, get a couple of new appliances, and move some other things around.  These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others.  Back to my bed -- unfortunately, alone.



 

2016 Started With a Bang -- to My Tibia , Cast Over My Knee, Bed Bound-- Forced to Sit Still for Three Months

It started with a box that came from Target.  It contained a 3-tier metal trolley that I could load things on, things that have been sitting on top of my dresser and causing ugly clutter; things like creams and cosmetics and nutritional supplements.  But I couldn’t find anyone willing and/or able to put the trolley together.  My building porter agreed, and I planned to give him an extra $20 to do so.  But then Juan was promoted to building super and found out what a busy job that was, and just didn’t have the time to do it.  So, in the meantime, my aide Cheryl found a cheap plastic trolley for $10, which I used for my BiPaP ventilator and there wasn’t any room for anything else.  So I would still find use for the Target trolley, but decided I would return it.  But when I checked the website for the receipt, I learned that the trolley was an “unreturnable item”.

So the box sat on the floor, where it still sits now.  And I went to get something off the top of the cluttered dresser and didn’t realize how fast the wheelchair was going and banged my foot on the box.  My knee bent and I heard what I thought was a crunch, but figured I just twisted my ankle and it would get better.

On Saturday January 16, I had some pain when I did my usual “stand and transfer”  but I assumed it would get better and it seemed to.  By Saturday night my aide was using a “u-sling” for transfers because it doesn’t require me to stand.  My leg was so painful I couldn’t sleep that night.  Because I am taking the blood-thinner Xeralto, I cannot take any NSAIDS [like Advil, Aleve, aspirin or Motrin], so that leaves Tylenol, of which two extra-strength caplets barely took the edge off.

By Sunday afternoon, I knew I had to go to the local ER [North Shore/Long Island Jewish Hospital in Forest Hills] about six blocks away from my apartment.  But I couldn’t drive there myself because I had to tilt the wheelchair back to raise the painful leg, and that’s not a good driving position.  So we called one of the volunteer ambulance corps and they referred me to another team because they thought I was going to Cornell.http://nyp.org/facilities/weillcornell.html  The second team brought me to the basement and we waited for one of the EMTs to come around with the ambulance.  Two hours later, after the ambulance wouldn’t start, we were ready to go six blocks.  We made the initial call at 2:00pm and reached the ER door at 4:30pm.  I was done by 6:30.  I had x-rays and the doctor [Dr. Rachel Morris, who was wonderful] told me I “broke a bone in the foot” and gave me the option of staying there overnight to be seen by an orthopedist the next day, or go home with painkillers and see an orthopedist of my own choosing.  Now I knew that the next day was Martin Luther King Day and there was no way I was going to be seen at that hospital by any kind of decent specialist on MLK Day.  I chose to take the painkillers and go home and call my doctor at Cornell on Tuesday morning.

My friend Debbie Wolfe called my primary care doctor -- Dr. Susana Morales -- at Cornell and I was referred to Dr. Craig Radnay,  an orthopedic surgeon on East 66th Street that Thursday.  Dr. Radnay’s office took their own set of x-rays and they showed I broke my TIBIA [pictured above]!!  As it is risky for an ALS patient to go under general anesthesia, he wants to see if the bone will heal without surgery.  So I have a hard cast up to just past my knee.  I am to be in bed as much as possible, and keep transfers with the lift to a minimum.  So here I write this with my limited time out of bed at my laptop.  I spend about half of my waking time in bed.  Those who know me, know that’s not my style.  I am learning how to watch TV on my mobile devices.  Truth be told, I am most comfortable in my bed covered by my warm comforter and with my legs elevated.  

I am scheduled to see Dr. Radnay again on February 11, and I am hoping and praying that the  bone is healing with the cast, which I am predicted to wear for three months. I am also in less pain while in bed.  Starting today, I reduced myself to ½ Oxycodone every 4-5 hours.  Oxycodone makes me very sleepy and one of it’s fun side effects is constipation.  So I will give regular updates; in the meantime, please keep me in your thoughts and prayers for a quick recovery without the need for surgery.

By the way, Chelsea is staying in a wonderful home while I am recuperating….More on that next time.  But so far, she has met a bunny couple and a very inquisitive cockatiel…….pics next time too.

Checking Back In -- Autumn Brings DVT Blood Clot Again [or still?], Weill-Cornell Stay and "Dr. Jeopardy"

I checked out for a while -- I needed to.  I was mourning the loss of a Dad as I knew him, dealt with another DVT [deep vein thrombosis] and also absorbing some deep criticism of me and the blog, the importance [or not] of honesty, and the sudden appearance of new angels and great "random acts of kindness" which took me out of a rock-bottom feeling that I was beyond unloved [hated in some cases] and I had to look at myself and my motivations and not just wave off some hurtful truths with an arrogant "it's her/his shit, not mine".  

Someone who plays a very big part in my life said this blog was nothing but an angry rant at everybody who had ever done me wrong.  Maybe it is, at times, but only to try to inform others about life as a person who was living  very actively and now finds herself with limited independence.  Dealing with this disability for almost 12 years, I fall into a sort of complacency at the way things have turned out. We, as people with disabilities, are the last marginalized group to suffer discrimination, and have to fight for justice and equality.  If anyone thinks I have no right to get angry when I encounter humiliations and bad treatment, let them live one day in my wheelchair and try to get to an appointment and depend on Access-a-Ride; see how people treat them out in the world, and how much they cannot do and places they cannot go;  even after 25 years of the Americans with Disabilities Act, there is still so much to be done.

In late September I went for a followup with my local cardiologist and this was a very timely appointment.  My left leg, where I had the blood clot in November, 2014, was still swollen.  He had told me in June when I went for my six-month appointment that the clot was gone and I could go off the blood thinner [Xeralto].  This was a big relief because using blood-thinners causes me to bruise more easily, and a simple knock or bang could cause a serious bruise and even internal bleeding.  So I was relieved.

So by the time my late-September followup appointment came around, I was concerned because my left leg was swollen again and red and shiny; these are all symptoms of a clot.  So I asked the cardiologist to check it out.  He seemed reluctant but -- with five minutes to go before my scheduled Access-a-Ride pickup, he got the technician to do a sonogram in the hallway.  Yes -- you guessed it -- his exam rooms are tiny and I am out in the hallway.  As a matter of fact, my EKG had to be done earlier with my shirt up to my neck and my bare back in the hallway -- bra strap and all. Anyway, the sonogram seemed to indicate that the clot was gone. My vehicle was outside so I ran out and quickly asked the doctor why he thought my leg was so swollen, and he shrugged his shoulders.  About 10 days later, one of my aides begged me to go to the local [N. Shore/LIJ] ER and I told her I had an appointment with my Primary Doc at Cornell in 4 days and I would have her look at the leg.  By now the leg was redder, shinier and even more swollen. I asked my Primary doc Dr. M to look at it, and I mentioned that the cardiologist had said there was no clot.  When she lifted up my pants leg, she was concerned and said "It's probably just a 'post-thrombotic syndrome' but just to ease our minds, let's send you for another sonogram."

When my aide and I glanced at the screen while the tech was passing the wand over my leg, and saw a huge white area, we both looked at each other like "this can't be good".  When the tech was gone for what seemed like an eternity and came back into the exam room with the radiologist, I knew something was up, but I said "Access-a-Ride is coming in five minutes, so we have to make this fast."  Ha ha ha!! He told me I would not need transportation because I wasn't going home so fast-- at least not today.  We were escorted to the Weill-Cornell [NY Presbyterian Hospital] ER where I got a little private room in the corner and watched TV until I got into a semi-private room upstairs at about midnight. I really thought the nursing care was very good at North Shore/LIJ [Long Island Jewish] in Forest Hills] last year but compared to the care at Cornell, NSLIJ was Motel 6 and Cornell was the Hilton.  Since my roommate was prepping for a colonoscopy and running between bed and bathroom all night, [and past my bed] I sat up and watched TV literally all night until a respiratory therapist brought me a bi-pap vent at 4am, without which I can never sleep, especially with the lights on.  

They had originally promised I could go home early the next morning, but of course that was a big joke.  The night before in my private room in the ER, a young resident came in to check on me, and I said "please don't disturb me during Jeopardy" so he kept coming in periodically and throwing trivia questions at me all night.  The next morning "Dr. Jeopardy" was on duty upstairs on 5North and kept coming by and throwing trivia at me, and I threw questions at him.  I stumped him with "name 8 countries with 4 letters"[can YOU?]..and we had a lot of fun.  Anyway, Cornell's idea of "early in the morning" was 6:00 that evening.  I have to say the food was restaurant quality and I'm not kidding.  I ate till I was busting and still had food left over.  I had pancakes and turkey sausage for breakfast [that was only part of it] and my favorite -- salmon-- for lunch and even the broccoli and potatoes were perfectly seasoned!  I thought the food at NSLIJ was good but this was delicious.  And in case you question my culinary judgement, anyone who knows me, knows I am a foodie, so I know good food.  

Cornell did something NSLIJ didn't -- they gave me an injection to disperse the clot.  The bad news -- I am going to be on Xeralto permanently.  Now, Xeralto [along with Eliquis and a few others] is part of a new generation of blood-thinners.  The old generation [Coumadin, Heperin etc]  require weekly blood testing and dietary restrictions cutting out vitamin-K foods, such as spinach, kale and Brussels sprouts [all dark leafy and healthy greens that I love].  The new generation of blood-thinners does not require frequent blood testing nor dietary restrictions.  Another reason I am happy to be living in these modern times.