Saturday, August 16, 2014

SICK!! Meeting a 60s Teen Idol and 42nd Long Beach HS Mini-Reunion Birthday

I don't remember the last time I felt so sick.  It started right after my mini high-school reunion [which I will talk about later] when I woke up with a throat that was so dry, it was weird.  That was Sunday, July 27.  Then the mucus came from everywhere.  And the coughing in unstoppable spasms.  By the time the week came to a close, the mouth sores arrived.  And the sore throat.  I had no appetite, even though my stomach was rumbling.  At the beginning of the next week -- which was also the beginning of August -- all I could eat was watermelon and ice cream.  Being that I was probably dehydrated, the watermelon was a good idea.  I tried sucking on ice cubes, but it was tough to chew them.  If I had been able to get ahold of ice chips, it would have worked out so much better.  I went to my primary care doctor, even though I can finally see a light at the end of the tunnel.  I feel weak and exhausted from all the coughing and the disruption of sleep.  There was a point where the coughing was causing a huge ache to go through my head and my throat.  I began to doubt if it would ever get better.  I managed to get myself to Cornell last week for the abdominal CT scan needed for my gastroenterologist to see if a "button" placement is doable for my PEG tube site [more on that later], but -- as of now -- I haven't left the house again in a week.  I cancelled my psychotherapist appointment and an appointment for sonograms of my abdomen and carotid artery which were ordered by my primary care doctor [whom I am going to see today, by the way].  So my doctor visit was frustrating to say the least because I waited two hours to see her, including the lady I graciously let go before me because she cried to me that she had a fussy baby with her.  So by the time the doctor got to see me, she looked exhausted and tried to rush me; however I asked all the questions I wanted.  I walked out with a prescription for zithromax [antibiotic],and another script for a cough suppressant with a load of side effects, one of which was hallucinations.  So the second day I took the medication, I fell asleep [another side effect was sleepiness] and awoke to a girl sitting on my floor who was me circa 1997 or so [about the time I started my teaching career].  She had shoulder-length auburn hair and I looked at her and she looked at me, raised her thumb in a "thumbs-up" gesture and yelled really loudly "HEY !!!"  I screamed "Oh my God!!" and she was gone.  It was truly freaky.  Not the psychedelic colors of an LSD trip, but surreal and eerie just the same.

Just before I got sick, I had two nights out that I really forced myself to go through with.  I could easily have blown both off. The first was on Thursday, July 24th.  I am Facebook friends with the bass guitarist of my teen-idol group, British-invasion band Herman's Hermits.  His name is Karl Green and through his Facebook page, I found out he was touring with an American band through small venues like bars and pubs throughout the United States.  I expected his New York gigs would be all in Manhattan and when I read that their gigs were later at night -- like 10pm, I thought "no way will I be able to do that, much less find someone to go with me.  But when one of the gigs just happened to be in Glendale, Queens [right next to Rego Park where I live], I was pleasantly shocked.  And Louise was more than willing to go wit me; in fact she almost pushed me to go.  There was a complication with Access-a-Ride, who insisted I was giving them the wrong neighborhood--after they had closed for the night, and it was too late to call back, I found out that they had the address of the pub in a ridiculously far-out section of Queens.  Just as well, because we found a number of city buses that went to the pub. Anyway Karl couldn't have been nicer and posed with me for a couple of pictures and then also came to check on me later and to plant a kiss on my forehead.

Since I never look in a mirror, I am embarrassed by my worsening tetracycline staining on my teeth and that I still have weight to lose.  Have to work on both of those and get a full-length mirror for my closet door so I can monitor myself.

That said, I went to a 60th birthday celebration, which was really an excuse for a 42nd high school reunion. I never made it to the 40th due to budget cuts at Nassau County Able-Ride.  But this year they were able to take me to Long Beach in the evening, so I went.  Let me explain:  I am only 59 this year although my class of 1972 classmates all turn 60.  I started school in Brooklyn and they had skipped me from 1st to 3rd grade already by the time I entered the Long Beach School System in 7th grade.  So I was always a year younger than my classmates; they were born in 1954 and I was born in 1955.  Anyway, I received the nicest compliment from Marjorie Feinman, one of my high school friends.  She said "Fern, you look really cute.  You look much better in person than in your pictures.  Thank God for that because I hate the way I look in pictures.  I got warm greetings from most people at the party.  Arguably my best friend in high school [JF] gave me an icy reception and others didn't know how to react to me, but a good number were really receptive and warm.  Here are two of the nicest:  Mitch Platt and Lauri Cohen [who go together as a couple just last year, after never knowing each other in high school. 

 and of course, Marjorie Feinman Shuster gets a "thumbs-up" for her compliment.

Sunday, July 27, 2014

A New Bunny Auntie, Fatty Liver?

My morning did not start out too well. I pulled out my box of photos I have not yet scanned because I knew I had two photos of *Matt.  I can even see the photos:  one of Matt and me, with his Oakley sunglasses around his neck, and the other of Matt holding a sea turtle at the Cayman Turtle Farm.  So I went through hundreds of photos and threw out the ones that really didn't mean anything in this day of being able to get pictures off the internet.  Suddenly a group of bad pictures taken in the 1970s of Big Ben mean nothing.  Anyway, I come across a bunch of pictures of myself during the first trip to Grand Cayman, when Matt showed me around.  I even came across a picture of me at the Christmas party down in Cayman with the airport station manager.  The two pictures of Matt? Missing, and I have no idea what happened.  Metaphorical?  Then, the next morning, my green tea appeared in a cup I hadn't seen in twenty years: A Cayman Airways mug.  Huh?  The logo of "Sir Turtle" is very much faded, but its appearance spooked me.  Metaphorical? 

My last blood tests at my primary care doctor revealed a "fatty liver", so I have to have a sonogram of my abdomen and kidneys.  I have since seen my gastroenterologist, and he said he is not worried about it.  I am trying to get him to cover my feeding tube opening with a flat "button", but he needs for me to have a CT scan of the area so he can determine if it can be done with the opening I have now, or if I have to have a whole new endoscopy procedure [this would make number 3 for me -- ugh], so I have all those procedures booked for the next 2 weeks.  

The day got better when I met the Wolfes for lunch -- Deb, Andrew and the twins Sofia and Elan.  It always gives me a lift when I see them.  This was my birthday lunch five weeks later.  Nothing like stretching my birthday out.  

Chelsea has a new auntie and I have a new friend.  Her name is Danielle [Nellie] and I met her -- of all places -- on LinkedIn.  I was in a freelance writers group and introduced myself as living in Queens.   My profile indicates that I am involved with rabbit rescue and she contacted me.    She came over this week and brushed out Chelsea, and was not intimidated or uncomfortable around my disability.  It was so comfortable and refreshing.  She was talkative and stayed until almost 11.  Here are some pictures of Nellie with Chelsea.

Well, okay, you can see Nellie's hand and shirt.  Maybe next time, there will be more of her.  But, you can certainly see enough of my Chelsea's beautiful face and how she loves to be petted.

Next time:  42-year high school mini-reunion and meeting one of my teenage idols up close...

Sunday, July 6, 2014

Searching for Matt*, a Romantic Weekend and My Screwup

His name was Matt [not his real name].  He worked for my company in Grand Cayman when I joined in 1990, and two months later,  he was assigned to be with me for two days after our annual meeting.  It was his job to give me an orientation to Grand Cayman -- the product I would be selling for the next two years.  I had had bad experiences in relationships with co-workers, and I swore I would never do it again.  But he was a cutie and I was attracted him.  He asked me to hang out with him into the evening, and I  told him that I had agreed to go out with some co-workers, which was true -- but I could have easily blown it off.  I was a little smitten with him, and it scared me.

When I returned home, my co-workers talked trash about him -- substance abuse, flakiness and all-around snarkiness and crappy attitude.  That December,  I ignored my boss' advice to stay away from the company Christmas party in Grand Cayman.  After dinner,  I looked for him, and was swept away,  first to a flight attendant's party at a big home in the interior, then to his house for a nap, before flying to the sister island of Cayman Brac.  It was romantic, and he was generous and attentive.  We talked a long time in the hotel room; we were almost exactly the same age, he grew up in South Miami with two brothers close in age to him, and his mother was from Grand Cayman [presumably in the house he was living in, at the time].  Let's just say that I handled it all shittily [is that a word?].  I was given strict orders before I flew to Grand Cayman for the party to "be a good girl"[my boss' exact words] and "refrain from sleeping with anyone on that island" and I was warned that everything I did would be scrutinized and if I did anything untoward, the stories would go all through Grand Cayman and then spread to the sister islands of Cayman Brac and Little Cayman.  When Matt asked me to stay on Cayman Brac, the "damage" was already done, but I was still scared of losing my job and getting a "bad rep", so I left for Grand Cayman and then home to New York.  As I say, I handled it all shittily.  It probably would never have worked, but I made it all worse.

A couple of months later, I was called to "the island" for a meeting concerning the state of the airline's service out of NYC.  I waited in my hotel room for him to call, and wondered if I should try to call him; but I didn't have his home contact and didn't want to call him at the office.  I had also been warned after the last escapade that if I wanted to keep my job, I needed to "stay away from Matt".  At the meeting the next day, his boss was asked if Matt would attend the meeting and she said he was "off the island".  Little did I know -- stupid me -- that the meeting was an attempt to justify my existence in the company [more below].  The year was 1991 and travel sales were suffering due to the Gulf Wars.  Also, the company was looking at whether we really needed non-stop service between NYC and Grand Cayman.  We had one more company sales meeting a few months later.  I looked at Matt from across the Hyatt ballroom, and stayed in my seat.  I wanted to run across the room and throw my arms around him, but I didn't.  I wish I had.  A few months after that,  I was informed he was let go from the company because of substance abuse.  Again, the year was 1991; nobody had personal email yet and there was no "social media".  I wasn't to buy my first desktop computer at home until 1994 [a mail-order from Compuserve that took me a whole weekend to put together].  In 1992, I was told that Cayman Airways would stop service out of JFK and -- despite a big lie from my boss that they would probably keep me on anyway -- I looked for another job before they kicked me to the curb -- and I found one.

The next 20 years, he popped into my mind periodically, but I was involved in my own drama of an unstable industry, getting my Masters in Tourism and Travel Management at NYU, hopping over to the hotel industry, and then finally becoming a teacher in an inner-city high school in East Harlem.  And then the last 10 and a half years,  dealing with my disability.  Matt has really come to me in dreams in the last couple of years and with the explosion of social media, I have reconnected with old coworkers, some of whom say that they haven't seen or heard from Matt in years.  I want to know if he is alive, how he is doing, and ideally to re-connect and communicate if we can.  

So I asked some of my Facebook friends who live in Grand Cayman, one of whom was his best buddy back in the old Cayman Airways days.  I wrote him a message.  He picked up the message and never responded.  Then I messaged another former coworker.  Same thing: the message was picked up and she never responded.  Then a more hopeful lead: another Facebook friend living in Cayman.  She said she wanted to Skype with me.  I had no choice but to tell her that I lost my ability to speak and if she wanted to know more, she could check out this blog.  She said "I'm on my way to work, but I will contact you tonight"  That didn't happen.  Three people who worked with me in the US were stymied, and I am totally stumped.  My friend Louise says it sounds grim.  We now theorize that he is dead.  Why don't they just tell me?  Louise theorizes that they know about my illness and don't want to upset me.  This lack of response upsets me more.

There seems to be a prevailing opinion out there that I "can't take" certain news.  Friends have confided in me that they don't want to tell me what's happening in their lives because it might make me feel bad that other people are having better lives than I am.  A bigger hunk of bullshit I have never heard, and it is a huge insult to me that anyone would think I would begrudge anyone their happiness.  I am blessed in so many ways.  Then, there are the people who won't let me empathie with their own aches and pains.  Recently when I inquired about a friend's surgery, my attempt at commiseration was met with "oh, don't worry about ME;  your problems are so much worse" and she quickly changed the subject.  More and more, people are cutting me out of their lives; it goes along with the old "I don't know what to say".  I am not a disease; I am an intelligent and interesting person who still likes to discuss art, literature, social issues [not only as concerns people with disabilities], family matters and anything else worth discussing.  And yes, I still want to see pictures of your vacations, your beautiful children, grandchildren, and your beautiful home which is probably mortgaged a second and third time and continues to be a money pit while my studio in Queens will be paid off in March, 2015.  I have said goodbye to friends who were healthy when I was diagnosed in 2004, only to lose their battles with cancer and heart disease, or die suddenly during dinner or a game of tennis.  I can share your joy now, because who knows better than I, that it can all fly away tomorrow [not that I wish that on you].

And yes, if Matt has sobered up and recovered from his addiction, I want to glory in that with him.  If he is dead, I want to mourn.  If he suffers, it would be a privilege to be a friend to him if he needs one, and even an inspiration if I can.  But leaving me in the dark, makes me even more curious and having no closure makes it worse than hearing a painful truth.  Don't "spare me" closure.  I am stronger now than I have ever been in my life.  Help me face the truth.  If you think you can help, especially if you have friends in the Cayman Islands or in Florida [where his family is, where he grew up, and where he could be now], please email me privately at, so I can give you real names and a few more details.    

Friday, July 4, 2014

Update, Making Amends, and Throwback: Cayman Airways

On the update front: I had my quarterly visit to the ALS/MDA clinic this past Friday and my muscles basically haven't declined in years. My legs don't work but the arms are strong and manual dexterity is good. I am now 10 and a half years since diagnosis (Jan, 2004). And my symptoms can be traced as far back as 1997.  I will start getting in-home physical and occupational therapy again to maintain and improve independence.  I lost 2 pounds, and would like to lose 15 more.  Summer is here and I went to Red Mango twice with Louise for my fro-yo fix.  I am excited because I have two bunny rescuers who have come forward to say that they want to visit, and a former student of mine has offered to help with a project around the house.  

A funny thing happens when you know your days are numbered.  You start to think about people you have hurt and/or relationships you have totally messed up and you want to make amends.  Suddenly "one day" becomes NOW.  And with the magic of social media, I find myself connecting with people I don't know very well [some not at all] and reconnecting with people from my past -- elementary school in Brooklyn, secondary school in Long Beach, college, jobs and volunteer work.  So I reconnected with Annu,  a former administrative assistant from Cayman Airways in NYC, as well as people from Cayman Department of Tourism and Cayman Airways in Grand Cayman.  

Cayman Airways was my first position as a sales executive in the travel industry and it was a very strange setup.  I interviewed there in 1989 and didn't get the job.  I could tell I was well-liked at my interview, but they were starting a whole new non-stop service out of New York and needed someone with experience, so they hired Winston, who was an experienced sales manager at British Airways and whose parents were from Jamaica.  This was all explained to me through a really nice letter from my would-be [and future] boss Frank.  Much to my chagrin, I went back to the job I had at Garuda Indonesia Airlines.  At the time i and even joined a better company with better chances of advancement. When I had my new job for only five months as a sales assistant, I received a phone call from Frank at Cayman Airways.  The man who had gotten the job instead of me, was moving to start an office in Atlanta and the position in NYC was open again.  I interviewed again and I got it.

I was informed that I was reporting to my bosses in Miami and flew to Miami for the quarterly sales meeting and met all my co-workers.  But I soon learned that there was a structure that was very confusing.  You see, for years,  Cayman had a staff in our cities that was under the control of the Department of Tourism, but they also repped the airline.  It was their concern to get people to the islands on any airline, but Cayman Airways felt they needed dedicated airline professionals in every office.  In my office, there had been a boss for years, but he wasn't MY boss and my Miami boss let me know it.  But C., the tourism boss in NYC had other ideas.  It was very uncomfortable that he expected to control me, but I had a boss in Miami.  Eventually my boss -- who always had my back, was terminated and my boss in Miami was B who would tell me to stand up to C but then would betray me behind my back. I was very naive about all this.  Let's just say that while I was on the road four days a week, it was natural for Annu to want companionship with the Cayman Airways/DOT people and there was a lot of manipulation going on by C and B and when the airline stopped flying out of NY and I was scrambling for a job, things had become so strained between Annu - who had already been hired by DOT, and C had hated me from day one, I ran out of there to a new job and didn't look back. I should have,

Fast forward to now in 2014. I had a long-needed talk online with Annu and I apologized for the crappy way I managed everything and we cleared the air,  There is still one person I need to reconnect with, but he has fallen off the face of the earth.  How does one disappear in this day and age of social media.  Anyway, I miss my days at Cayman Airways and it was a time of fantasy for me: a dream job and a dream island.

Friday, June 20, 2014

A wonderful day in the park for my birthday with family

The day after my birthday – Sunday, June 8th – my sister Haley had a wonderful idea and texted me about it the day before – on my actual birthday. Instead of taking the family out to a mediocre restaurant and racking up a huge bill and dispersing after an hour to go to our respective homes, she came up with the idea to hang out at a park and they would bring really good sandwiches. There is a really nice park about a 15-minute walk from my house. It's called Yellowstone Park [not after the national park, but after the street it's on – Yellowstone Blvd.]. When my niece Rianna and nephew Tyler used to sleep over my apartment during a warm weekend, I would take them to one end of the park, which had swings, monkey bars and seesaws. But at the other end of the park, there is a collection of grassy hills where people spread out blankets to take in sun, and where there is a constant progression of people walking dogs, and sometimes even letting the more well-behaved ones play off-leash. At present, my friend Judy and I like to go there; however, lately Judy can no longer do the 15-minute walk. There is no bus-route from my house to get there either. The aide that I have on Sundays also cannot walk the long way to that park.

So I suggested we go to McDonald Park in Forest Hills, which is along the route of the Q60 bus which runs along Queens Boulevard. I remembered that there is a city Greenmarket right across the street on Sundays, which I hadn't been to, since last summer. The only caveat was that I hadn't been to McDonald Park in years and couldn't vouch for its cleanliness and whether we would have to grapple with homeless people on a Sunday early afternoon. And I didn't remember whether there were sufficient tables and whether we would we strong-armed by chess regulars who would claim their regular tables. We confirmed to meet there at 12:30 and my sister said she and her family would bring really good wraps from Farmer Joel near her house, which has turned from a fruit stand when I lived in Oceanside, to a since-expanded very upscale and hip store full of artisanal sandwiches and healthy foods. In fact, my widowed father relies on them [and the local Trader Joe] to eat healthy meals – “Meals on Wheels” is not his style – “I don't need that”, he says.

So I told my sister to bring me something vegetarian, and we were set. She also said she would bring Dasani cans of sparkling water and juice. Just my style, and I was more than satisfied. She also brought me an awesome eggplant sandwich, which I loved. So I told my aide Gulshan that we didn't have to walk all the way there because we could take the public bus. I had no money on my reduced-fare handicapped city Metrocard, so on the way to Queen Boulevard, Gulshan would go down into the subway station and refill my card in the machine. So, I waited upstairs on the street, because my subway station at 63rd Drive isn't accessible. She was taking an awfully long time, and I began to worry. Finally, Gulshan came up and said the machine was sucking in everybody's card and said they would send it back to me in the mail. WHAT???? Typical New York City bullshit. By the way, as of this writing, I still haven't gotten it back. So we then bought a full-fare card and away we went. Gulshan was amazed at how efficient and respectful the bus-drivers are to wheelchair passengers. I think now she will be more amenable to taking bus rides with me on Sunday – maybe to Trader Joe? I hope so.

Everything went well after that. I texted my sister that we were coming and she texted that they were already in the park. We found each other and it was a great afternoon. They gave me a much-needed shawl and a Teavana gift of an infuser mug and a tin of summer strawberry tea. You cannot go wrong giving me red wine or tea. Unbeknownst to me, there was also a street fair happening on Austin Street, so that and the Greenmarket kept us busy after lunch. My nieces had a great time at the street fair and bought muffins at the market.

It was a great afternoon. Something so simple as a park and sandwiches gave me such pleasure and, for the first time, I didn't see looks on my nieces' faces which said they would rather be anywhere else but where they were. And my nephew actually hooked up with one of his college buddies [he just graduated from Binghamton University] and he left to meet him and catch a movie. We hung out at the park until after three o'clock, whereas if we went to a restaurant, we would have had to vacate when we finished eating. I have learned to love people-watching and people-listening and there was so much opportunity there to keep us all entertained. My dad looked calm and I actually believe he was having a nice time. Since my disability, I have learned to appreciate simple things, like watching people and listening to their conversations. I also watch the animals, which in New York City means squirrels, starlings, pigeons and sparrows. Imagine if I were in a place with more exotic wildlife? I often think that if I were able to go back to the Cayman Islands, I would stay far away from Seven Mile Beach and avail myself of “Air BnB” [which I have already browsed through] and stay in a real village in the interior with the locals. 

Thursday, June 5, 2014

Sex and the Disabled Woman, Back from Nutrition Studies, Missing the Ocean

I cannot believe how long it has been since I have updated, but then again, maybe I can believe it.  I have just completed a certificate in Plant-based Nutrition in a course through e-Cornell, led by the renowned T. Colin Campbell and with lectures by other Cornell professors.  It reinforced what I have been learning for the past year -- that a whole-foods, plant-based diet is the healthiest way to eat and even the best for the environment.  My original bunny-friend/mentor, led me to this opportunity.  I am happy to say that this course is a graduate level class and my fellow classmates largely consisted of professionals in the health-care field -- including doctors, nurses, nutritionists, dieticians and other professionals taking the course for continuing education credit.  Although the course was totally online andcould be done at my own pace and time, each of the three courses had to be done within a r-week period.  So I did it, which proved to me that I can be focused and driven where I needed.

But I could only have dedicated myself to this, by neglecting other things, like email and gams online, and even television watching.  And now, I am unsubscribing from a lot of mailing lists, especially a whole lot of nutrition websites that I can see now, were superfluous.  Because after taking the course, I can see that a whole-food, plant-based diet is the way to go for the ultimate in immunity and the proper working of my body.  I am hoping to be able to get off some of my medications.  I am not going to resist physical therapy when I go to the MDA clinic next.  It can serve as exercise, and help me keep the weight down.  Oh, and a whole-food plant-based diet also helps keep down the weight.  

Now that we're finally in summer, I am getting outside a little each day to sit in the sun in front of the building.  My vitamin D level was low at my last doctor's visit, and I have to take supplements.  But it is my understanding that sitting in the sun without sunscreen for 20-30 minutes, you store enough vitamin D for the winter. This will be about the fifth summer that I will not see a beach or the ocean, and I sorely miss it.  My family is nervous about having me come to their beach club without an aide, and the aides won't go.  My family is frightened that "something will happen", even though I don't know what that something is.  However, they would not feel comfortable taking me to a bathroom, so I guess that takes care of that,  although I admire their honesty, and they say what others won't.  Despite the Americans with Disabilities Act, most public places misunderstand what the words "wheelchair-accessible" mean, and that beach club is no exception.  You cannot put a grab bar next to the toilet and call it "accessible".

I wonder about sex.  Recently, two disabled people I know, who are both more disabled than I am, mentioned being in relationships.  These relationships were entered into after being disabled.  So what does this mean?  Without going TMI, I still have desire and feelings  and could still use my hands, mouth and other elements of intimacy.  Of course, who would be attracted to me?  Good questions,  but I would love to have intimacy again, especially since I don't have to worry about getting pregnant anymore, and I am less worried about the morality of having sex with someone who is not committing to me.  All it would take is an understanding partner who could get me in the right position and be patient, because it's been a while.  I also wasted too much time from the mid 90s until my diagnosis, involved with a couple of men who were emotionally [and physically] unavailable, but that's for another blog update.  There are quadriplegics, for God's sake, who are involved with able-bodied partners.  How do they do it?  Maybe that's my next reading assignment.

I'll stop here, because I want to get this entry published.  But my ten-year longevity brings new questions.  I have been blessed, so how can I use this blessing for the greater good and how can I make my own life more meaningful and form solid relationships, as other connections move on and put more distance between us.  How can I let go of what's no longer working and embrace new situations that work better?

Thursday, March 20, 2014

Coming from a Dark Place; Wish I Had Seat Elevation

As my printer is permanently broken, getting my papers together for this year's home care re-certification had additional challenges.  One thing I really miss with my present wheelchair is the feature of seat elevation.  It would cost m about $1100 cash out of pocket to add on this feature that I found so useful on my old wheelchair.  At the time I got the first motorized wheelchair, the MDA gave a $2000 grant to each client for wheelchair modifications.  Due to budget cuts, they no longer give this.  So one thing led to another:  even if my printer were working, it would have been too ominous a task to copy anywhere from 70-80 pages of documents.  And, without seat elevation, it's impossible to make copies at a public copy machine.  So I called Staples near my home and explained that I am in a wheelchair and needed to make one copy each of about 75 pages and the woman at Staples said "great.  Just drop it off and we can do it for you".  Such is the provision of the ADA: when self-service is not accessible, the PWD gets full service at self-service rates.  Well, that holds true if I show up myself.  But when an able-bodied aide shows up, she is directed to the self-service copier.  That task is not in the job description of an aide, so I was so grateful that Ellita stood at the copy machine and made the copies for me.  Otherwise, we would have had to make another trip with me [bundled up for the freezing cold] and tell the counter person I need assistance.  I am saving for a new printer and this time it will be wireless, so that I can also print from my iPad.  And, I still miss seat elevation on my wheelchair.

Beginning early April, I will be starting a course in Plant-based Nutrition through e-Cornell.  There will be 3 separate courses of two weeks each and at the end I will get a certificate.  I don't know what exactly I will do with the knowledge in addition to using it to better myself, but I look forward to somehow using it to help others, either by counseling, blogging or writing articles.

A couple of weeks ago, I went for my quarterly visit to the ALS clinic.  For some reason, each team member was trying to get me to sign on for home physical therapy again.  As I told about the experience in this blog, I had a therapist visiting from VNS [Visiting Nurse Service] and she worked me so aggressively that a couple of months after starting, my left knee began to hurt badly.  This was a year ago -- in March of 2013.  I had to stop PT and see an orthopedic doctor who visited the office of my primary doctor once a month.  To my dismay, I only saw a PA [physician's assistant] who gave me a prescription for physical therapy.  This time, I attended outpatient PT a couple of blocks away from the house.  I attended PT all through that summer and at times the pain was insurmountable.  When I had run out of Tramadol [pain reliever] and there were no refills for the medication, I called my primary doctor who never returned my calls.  So I made an appointment with the orthopedist at his own office and saw two young men who identified themselves as Medical Assistants.  They refused to let me see the orthopedic doctor and also refused to let me have any prescription painkillers.  I took over-the-counter painkillers until I realized I could live with the pain, but now had another sensation : a "pins-and-needles" feeling on the ride side of the left knee. see archive

So my neurologist prescribed Lyrica for me in the fall and said I seemed to have a neuropathy. He referred me to a rheumatologist. In the meantime, Lyrica made me even more sleepy than I usually am.  Moreover, as I wrote about in this blog, [see archive] I took an antihistamine one morning for my year-round allergies and I went into such a deep sleep that I was cognitively affected for a good part of a weekend.  I was panicky because I thought I was going into dementia.  When I woke up and realized I could think semi-straight again, I went on the internet and found out that antihistamines and Zyrtec don't mix.  Finally, I went to the rheumatologist and he determined that I didn't have neuropathy and told me to get off the Zyrtec, which I gradually did.

Anyway, the thought of going back to PT was not sitting well with me and this put me at odds with the members of my ALS team.  And to make matters worse and even more confusing is the question of whether home health aides are willing and even permitted to exercise me.  One of my aides works for many years for Partners in Care, which is the home-care arm of the Visiting Nurse Service [VNS], the company through which I get home PT.  In her in-service training, my aide has been told that she SHOULD NOT exercise me because of liability issues.  Then the VNS PT's come to my home and tell me that, in between sessions, and after they leave, my aides need to do ROM [range-of-motion] exercises with me.  Since Medicare limits their time with me, eventually they leave and expect that the aides will continue the work, which they don't.  When I was at clinic, the team members insisted that my aides have to exercise me.  So do I "yes" them to death and accept the PT, knowing that it will not work out the way they would like it to?  Or do I keep talking honestly and have the team think I am being uncooperative and difficult?  And the other question is:  do I have to go through a parade of people coming through my apartment to "intake" my case and then trying to push other services on me like occupational therapy [OT] with the goal of "making me more independent"  [LOL], and speech therapy [an even bigger LOL]?  Really! that is what they did the last time, and I had a procession of VNS people coming every day into my apartment full of machines and other clutter, including cardboard boxes.  

I have been in a very dark place this winter.  I cannot seem to conquer the clutter without people to help me move stuff.  Any able-bodied friends I had,  have moved on to other things; some are able and willing to do some kinds of things but not others[understandably].  And additionally, the closing of my basement access for a full month as well as the problem with my portable shower unit gave me a feeling of dependence and lack of control that was worse than ever.  For a while, I could neither take a shower nor get out of the building to get my hair washed at the salon.  I had a can of dry shampoo in the apartment for when my head got too stinky, but that is never the same as a shampoo.  There is a way to get down steps with a manual wheelchair, as my brother-in-law does every Thanksgiving to get me to the family dinner [their house is 6 steps up], but I have nobody strong enough to do that in my building, and then to wheel me around in the snow anyway.  While I often relish quiet time to meditate, get creative and read, and not have to worry about interacting with a mechanical voice and people who are uncomfortable with my disease,  I still get painfully lonesome.  And yet, my apartment is so visitor-unfriendly that I am ashamed to have people see it anyway. Spring is coming and I feel the dark place get a little less dark.