Monday, December 8, 2014

DVT [Blood Clot] and Cellulitis Put Me in the Hospital

So when the summer ended and my trips to Rockaway Beach became history, I suffered withdrawal and a bit of a blue mood.  Every year when I enter winter mode, I get a little sadder.  We had a bit of a heat wave, but the businesses at the beach close up after September and my main beach buddy Louise became very busy directing her Gingerbread Players in Chekhov's "Three Sisters" which took up her weekends anyway. 

The bright spot was the Walk to Defeat ALS in Eisenhower Park, Long Island on September 28.  Danielle designed a fantastic tee shirt for the team:

 She is a very talented graphic designer so if you want to hire her to do a design, let me know.  Anyway, she designed the shirt with bunnies -- of course -- and pirates to honor my friends in the Cayman Islands.  One of my best jobs was Area Sales Manager for Cayman Airways in the tri-State area, in the early 1990s, and a lot of my Facebook friends are from Cayman.  Thanks also to my team members Diana,  Janis Hirsch, Deb and Andrew Wolfe [who brought the wrap sandwiches from Farmer Joel in Oceanside, Long Island, and always awesome fundraisers] and Sofia and Elan Wolfe.

In late October, a turn of events put my life in a tailspin that I am only now recovering from.  I began to notice my left leg -- especially the knee -- getting harder to manage when I tried to stand.  I chalked it up to my injury at the beginning of 2013, and prayed that it didn't mean my disease was progressing.  By the beginning of November, my left foot and leg were blowing up to twice the size of my right foot and leg. I was concerned but not alarmed, although I should have been.

By Sunday 11/9,  my aide Gulshan made me cancel plans to go to a play that my friend Louise directed.  Gulshan insisted I go to the ER at North Shore/Long Island Jewish Forest Hills Hospital , which is just around the corner from my apartment.  I fought her tooth-and-nail on this.  I had had some bad experiences in hospitals, most notably in Beth Israel overnight in 2005 when they wouldn't let me keep a cellphone or even a speaking device except for a writing board that the nurses kept moving and wouldn't give it to me because they didn't know what I was asking for -- despite a sign over my bed indicating "Patient needs writing board to communicate".  Enter the morning shift of nurses -- one of whom kept laughing at me when he didn't understand me.  And there had been visits to the local ER in Forest Hills that had been disastrous.  So I avoided hospital stays at all costs, despite promises from my friend Michael [a big kahuna in North Shore/LIJ System's administration] that the hospital was getting better.

So, when the doctor looked at me in the ER, told me I had cellulitis and intravenous antibiotics were a good idea,  and suggested admission until at least the next day, I went kicking and screaming.  I was in the ER waiting for a bed from 3:00 pm on Sunday until 5:00 am Monday.  Then I went up to a room, and ended up staying until Wednesday at 6:00 pm. Once admitted, my aides are not paid, but Gulshan stayed with me until 6 am Monday and then Cheryl came and stayed until about 2:30 pm  and ran back to the apartment to get me some things, as well as meet Chelsea's Auntie Nancy to pick her up and take her to her house.  By then, I learned that I would not get out that day - far from it.  By then, I also learned that a blood clot was suspected and I would be the hospital's "guest" for "quite some time" as the nurse put it.  I was terrified because I pictured MRSA and staph and antibiotic-resistant microbes creeping into my body and causing a worse scourge and possibly killing me.  So Louise came to see me on Monday night and we discussed my Health Care Proxy documentation that was now in a forgotten place somewhere in my apartment and how important it was to find it.  I had no idea when I would get out of there.

I must say that things have improved immensely in technology since 2005 and in hospital policy as to the electronics they allow.  Not only was I allowed to keep my iPhone, but I had brought my charger and the nurses gladly kept charging it for me in an electric outlet right in back of my bed.  I couldn't have asked for better care all around.  The nurses and LPNs were great!  On Tuesday when the doctor came in and told me that a test I took that morning had revealed a blood clot [aka Deep Vein Thrombosis or DVT] and that I would have to stay one more day, I questioned whether I should go home so soon.   DVT is a serious thing -- if my blood clot had gone further -- to my lungs and/or heart, it would have been much more serious and led to a much longer hospital stay.  At its worst, it could have been fatal.  On Wednesday evening I was discharged with a 7-page discharge plan.  I left with prescriptions for an additional week-long round of oral antibiotics, steroids to wean me off them within a week, and a regimen of a new generation of blood-thinner [Xeralto] that didn't require weekly blood-monitoring and no dietary restrictions.  The latter is a big deal, because the old generation of blood thinners like Coumadin and Heparin required a weekly blood draw and also restrictions on some of the veggies I love most [high in vitamin K] like cabbage, spinach, broccoli, kale and brussels sprouts.  So I was a happy camper as far as that was concerned.  The blood thinner is to prevent further blood clots, but according to the doctor, the actual blood clot I already had, would clear itself.

So I came home on Wednesday, Chelsea's Auntie Mary Ann brought her back on Saturday, and I will follow up with my primary care doctor next Tuesday.  I have to say I felt a little crappy for about a week after I came home, from the antibiotics and the steroid-weaning, but when that was over, I actually felt better than I had in several weeks.  I guess I didn't realize how sick I really was.  The weakness and fatigue [and bluer-than-usual disposition] in the weeks preceding my hospital admission, I had chalked up as a norm with my disease,  and sadness at summer leaving and winter coming on.  And I won't be so afraid of checking out an emergency at my local North Shore/LIJ Forest Hills Hospital in future.  I won't say that I will check in there as a spa hotel, but if I have to stay, I won't be so terrified.  

Wednesday, September 24, 2014

My Take on the ALS Ice Bucket Challenge and My Message to the Haters

I deliberately waited for the momentum to slow down a little and for the "naysayers" to rear their ugly heads, as I was sure they would-- and they DID!!  Because no matter what good deed is done, some group -- or groups -- must come out of the woodwork to criticize and almost make the do-gooders question that they did good, and almost make them feel that they did something bad. 

You had to be living under the proverbial rock this summer -- at least in the United States -- to not be familiar with the ALS Ice Bucket Challenge.  But if you are reading this and are not on Facebook and/or don't have a TV, and are not in the United States, here is what it was about [in a nutshell]…..In order to raise money for ALS, you filmed yourself dumping an ice bucket full of icy cold water over your head, either of your own altruistic good will or as a response to a challenge [nomination] by someone who had already done the challenge.  Most of the people who did the challenge also then donated money to the ALS Association, the ALS Division of MDA[Muscular Dystrophy Association], of which ALS is one of the 40+ muscle diseases covered, or MDA's Wings Over Wall Street, Project ALS or ALSTDI [Therapy Development Institute].  Then you nominate 3 people [or groups] to follow in your example and do the Ice Bucket Challenge and nominate 3 others….and so on.  I am not going to go into the history or how this whole thing started;  you can "google it".  Just go on YouTube and search for "ALS Ice Bucket Challenge" and you will see hundreds of videos of everyday people getting icy water dumped on their heads.  Curiously, there are no videos on YouTube of the many celebrities who did the challenge, but there were hundreds -- TV stars like Mariska Hargitay and Chris Meloni from "Law and Order SVU" and the cast of "Modern Family" to superstars like Angelina Jolie and Brad Pitt, Reese Witherspoon, and even media moguls like Oprah and Ellen DeGeneres.  And these stars gave huge amounts of money in donations.

In the 75 years since Lou Gehrig's famous "Luckiest Man" speech [who hasn't seen Gary Cooper in "Pride of the Yankees"?] at Yankee Stadium, there hasn't been such awareness of the disease that now bears his name in the United States.  In the 10.5 years since I have been diagnosed, I have not heard ALS on the lips of so many celebrities!  Do they know what it's like to live with ALS?  Most of them don't as most of them didn't know about cancer or AIDS until it touched their lives or the lives of loved ones.  And as the years went on and the dollars flowed in, people were living longer with cancer and AIDS and people talked about those diseases -- decades after my grandmother died in 1948 of breast cancer at the age of 50 after being sick for a few weeks.

Since typically, ALS patients died within 2-5 years, it was considered a death sentence with no hope.  Upon diagnosis, most ALS patients were told to "get your affairs in order" and basically to go home to die.  And we weren't glamorous -- we were quickly put in wheelchairs and many of us lost our ability to speak, which is not sexy.  So I personally don't care if the over 60 mllion dollars raised is done so by celebrities who -- at this point -- don't know diddly-squat about my disease.  And I don't care if they view it as a fun way to get publicity at this juncture.  All I know is that many people I have met this summer have suddenly woken up and realized that I have the disease for which they are getting buckets of water thrown on their heads.  I am seeing people on Facebook dedicate their ice-bucket humiliations to me and that means a lot. This Ice Bucket Challenge has raised a shitload of awareness as well as funds.  At this point, I don't expect much more.  I know there are a bunch of people out there who are getting wet and freezing and saying "this is the disease my friend/coworker Fern Cohen has ……now I get it!!"

All was going too well, and then the party poopers had to weigh in.  First, people with other diseases, some with cancer, others with other neurological or muscle diseases, saying that they were sick and tired of the attention ALS was getting.  All my 10+ years with this disease, I never begrudged the cancer, AIDS, MS or Parkinson's patients the attention their diseases were getting.  I always understood cancer and MS were not as rare as ALS and in fact I had always volunteered for AIDS Walks, MS walks, Broadway Cares/Equity Fights AIDS, etc.  Those are terrible diseases too.  But for the first time in 75 years, can't we "enjoy" our day in the sun and the funding we so desperately need to find a cure or even an effective treatment?-- to date, we only have relief of symptoms and ONE FDA-approved drug which only prolongs our lives maybe a few weeks.  Most cancers --especially when caught early, can be cured or put into remission these days, AIDS is no longer a death sentence, and MS has so many different drugs coming out all the time.  Cut us a break, will you?  Just this once.  Now when Rite-Aide and CVS run their promotions every year and the cashier asks "Would you like to give $1 to ALS,  less people will respond with "wha?" and maybe remember the Ice Bucket Challenges and say "ALS?  sure, here's a dollar".  Maybe I can get more donations for my team "Fern's Fighters" in this year's "Walk to Defeat ALS".

Then came the concern about where the money is really going.  This is a concern when we donate to any charity; is the money going to pay CEOs' huge salaries and/or administrative expenses?  And, in this case, many wondered if the money was going to research or to patient services.  I suggested to these skeptics that it was hard to know this with the ALS Association and MDA [sorry] and it would be safer to donate their money to either Project ALS or ALSTDI   because these two entities ONLY do research and both have "dream teams" of scientists that ONLY do research and have very low overhead.  Furthermore, both of these organizations were started by family members of ALS patients and their websites are totally transparent; they tell you all about the research they are doing and where the Ice Bucket Challenge money is going.  I have seen full-length documentaries about both Project ALS and ALSTDI and I am totally confident that the money you donate will go straight to research.

Then came the water people.  Okay, I understand there are poor people who don't have clean water in the world, especially Asia and Africa.  I have given to that cause and a cereal I buy often: Purely Elizabeth gives a percentage of what I pay, to the Water Project.  These water people said they refused to do the Ice Bucket Challenge because  it wastes water.  Okay, okay.. I hear you.  We water our lawns and keep the water running while we brush our teeth too.  Okay, maybe next time we can tweak the challenge to use recycled bath water or rain water, or come up with a way that we don't waste so much water.  this was all new to us. If you're concerned about wasting water, then just make a donation, and SHUT UP.

Then the Catholic Church weighed in and said that Catholics should find out if their money was going to usage of fetal stem cells.  So next time we can promote organizations that only use ADULT stem cells.  I hear you.  And the animal activists exposed that a lot of the research uses mice.  I don't know how to answer that as I am an animal lover too. I am understandably happy they are not using bunnies for ALS research and refuse to buy cosmetics tested on animals and eat a vegan diet mostly [I fall off the wagon sometimes].  To date, the "mouse model" hasn't really yielded any dramatic results, so research scientists are looking at other "models",  like more human trials.

But the naysayer who really pissed me off was a partner of an ALS patient who passed away sadly about 6 years ago.  I like this woman a lot and she did something really special for me after her partner died for which I will be eternally grateful.  But this woman posted on Facebook that she was against the Ice Bucket Challenge, because celebs were using it as a "publicity stunt" and knew nothing about ALS.  She thinks that these celebs should be going around and talking about ALS.  Yes, that would be ideal, but WHO CARES at this point?  Typically, we don't feel passionate about a disease until it touches us personally.  Nobody cared about breast cancer when my mom went on her first journey with the disease in 1976.  It was whispered -- as if the mere utterance of the words would spread the disease through the air -- and women were embarrassed to talk about it [in the mid-1970s, breasts were very private]  It often involved breast removal, which was the elephant in the room and people stayed away from my mom as if she had the Plague or leprosy.  Now, we wear our pink ribbons with pride and women [and men] talk about breast cancer freely,  even celebrities.  The same with AIDS -- it took a while before anybody said in public that he was HIV positive.  Kids like Ryan White were banned from going to school.  It took a while for anyone to get up and talk freely about AIDS.  What did anyone know about Parkinson's Disease before Michael J. Fox came out as the disease's famous face? And then I wonder: would this woman whose partner is dead half a dozen years -- would she begrudge the money raised by the Ice Bucket Challenge if her love were still living with ALS?  

What do we expect?  The money and awareness raised by the Ice Bucket Challenge have been phenomenal.  It even caught on in the Cayman Islands, the United Kingdom and Canada.  We are talking about the Ice Bucket Challenge next summer.  Perhaps the effort can be tweaked in future to use recycled water, have the funds go to stem cell treatments that only use adult stem cells, only to research that doesn't use animals, and only earmarked for research altogether [and make sure no ice bucket money goes to any other fund, like administrative or patient services].  And maybe next summer, we can produce a series of PSAs with celebrities getting icy water thrown on their heads and saying something like "ALS is a degenerative and disabling disease which strikes adults of both genders, all ages, races, religions, nationalities and ethnicities, in the prime of their lives.  For more information, go to  [website]".  For now, I am so grateful to the many celebrities and non-celebrities who raised colossal funds this summer. Nothing is perfect,  especially the first time.  And, it's important to note that the ALS Ice Bucket Challenge was started by someone to promote another cause, and then gained momentum for ALS by an ALS patient.  It wasn't begun by professional fundraisers or PR people, who would have perhaps researched the ins and outs and anticipated the objections.  However, this grassroots campaign didn't see what was coming.  As a matter of fact, nobody saw that this campaign would go so viral and bring in the many millions it raised.  It was the most awesome surprise of my summer.

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...

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.

Monday, February 24, 2014

Stuck in a Frozen Apartment; Inspiring or Just Resilient??

It hasn't been an easy last few weeks.  First, a month ago,  my building put up a memo in the hallway announcing that there is repair work to be done in the basement level and that level will be closed of from 9am - 5pm every day from Mon through Saturday.  Now, for those of you who are not aware, the only way I can exit and enter the building is through the ramp at the basement level.  So, I postponed every doctors' appointment I had, as well as a lunch date with my friend Judy.  Then, a snowstorm came and I guess the building staff was so busy with snow duties that the basement work had to be pushed back a bit.  There was a memo that the basement would be closed down another week.  Furthermore, we were having trouble with the heating system in the building, and everybody in the building was complaining our apartments were freezing and we were all walking around with coats, sweats, and even hats and scarves inside our own apartments.  I even put a towel over Chelsea's wicker tent because she was uncomfortable even with her natural fur coat.  I learned a few days later that we had a busted pipe, which had to be repaired before the basement work could be completed.  So, not only could I not leave the building for appointments, but I didn't even have the option to go to hang out someplace warm -- like Panera or Starbucks.  We had some of the coldest days on record [close to 0 degrees] and I was stuck in a freezing apartment, with no way out to a warm place to hang out for relief.

Add to that another complication: my portable shower unit.  My friend Louise helped by making a set of phone calls to the distributor of the Fawssit portable shower unit, to get a new hose to replace the old one which had split. For those who have not been following me all these years, my wheelchair doesn't fit in my bathroom, and I haven't been in the bathroom for about five years.  So I have a portable shower unit called a "Fawssit" which hooks up to the kitchen sink [for outflow] and the bathroom toilet [for backflow of dirty bath water]. The people at Fawssit are not easy to reach, because voice mail picks up, which means that my relay operator has to leave a message and they have to call back and possibly get impatient when my aide has to relate what I communicate in writing, which leads to much frustration.  It was much easier to explain it all to Louise and have her field the voice mails and the callbacks.  So finally we got it together with my credit card and the part came - $90 later charged to my card.  Since the Fawssit is on loan from the ALS Association, it is my responsibility to return it in working order, and the maintenance is up to me.  So, the new hose is a little different from the old one and requires an adjustment to the kitchen sink.  The aides are a little reticent about asking the super and assistant super to come do service in my apartment while they are so busy with snow duties and basement repair.  So when my hair got too gross for myself to tolerate, before they closed the basement [which was before I received the new part], I went to the salon for a wash and blow-dry

The amazing thing about all of this is that, in my previous life, I was obsessed with showering at least once a day [more in summer],  and washing my hair AT LEAST every two days.  If you told me I would get to wash my hair and take a shower once a week, I would have said "shoot me now, please".  Every time anyone calls me "inspiring", I want to laugh, because sometimes it's not such a good idea to know what lies ahead, because you think "I can't handle that". But you get there, and do what you have to do.  You rise to every occasion because you have to.  You have no other choice.  I don't have the resources to remodel my apartment, so I deal with personal hygiene as best as I can.  I joke often that it's very medieval, but it is what it is.  For a long time, I was afraid to tell anyone about this, because I figured I would lose all my visitors and friends, who would think of me as "nasty" or "disgusting".  Now that I really only have one person who comes regularly to take me out, I can honestly say that I have lost all semblance of a social life anyway.  People move on, and it apparently wasn't because of lack of traditional hygiene.  If anyone had told me a few years ago that I would be stuck in my apartment xcept for doctor's appointments and a monthly visitor, with an added surprise once every couple of months [either from another friend, family or a surprise cousin from out of town or a once-every-few-years old friend], I would have said "shoot me now please". 

Coming up:  Nutrition course and HRA home care recertification [again!], more to look forward to.

Wednesday, January 15, 2014

Resolutions and letting go of things that no longer work

It's a new year and something is clearly not working so I have had to work on priorities -- again!!  One of the hallmark failures of my life is trying to save associations and relationships that haven't been working.  Last year, I wrote for a site called Examiner.com whose modus operandi for recognition was SEO [stands for "search engine optimization"] or ranking on Google search.  Well, Google has been revamping its algorithms for placement.  What is an "algorithm"?  Hell if I know, but it has something to do with a math that I never got to study......Calculus drove me so mad in college that I gave up after that.  Anyway to put it in layman's terms  ["layman" includes me, by the way], Google didn't want its searches to result in a searcher reaching "content mills", which I think included Examiner and other sites I was writing for.  So they wanted authors to become noodges [Yiddish for "pests"] and push articles on social networks like Facebook, Twitter and Linked In.  My topics were "Rego Park", "Food" and "Ethnic Cultures", topics I am really into, but don't like to write about as an obligation.  And I was encouraged to keep blogs on those topics as a way of getting readership.  So at one point, I had up to four blogs.  Furthermore, I became very interested in the strategy of "food as medicine" and got onto way too many mailing lists and activated way too many Google alerts.  Along the way, I helped to start a site called "Nextdoor Rego Park" as part of a national network, and of that I am proud..

What resulted from all this was a very full mailbox, including every healthy eating mailing list I could find.  At one point toward the end of the year, I had 2000+ emails in my inbox and emails from close friends got lost in the melĂ©e.  On Black Friday and Cyber Monday alone, I got about 800 emails from every online store I ever shopped in.  Add to that the usual depression I go through at the holiday period -- even before ALS --and I had clutter beyond belief, as I talked about in my last update.

I am so much more than my ALS.  A reader sent me a private email asking me to talk more about the early days of my ALS and I told him I have a half-written book.  His email made me see the importance of finishing that book.  Also, I wish to tell more about the person I was before ALS, which was a blog at one time called "Of Jews and Chinese Food".  I had started a blog about eating healthy, which drew a lot of traffic.  I want to combine all of this in my one blog here.  It is all related.  I have hypertension, high cholesterol and hypothyroidism.  What does all this have to do with ALS?  A lot, considering I used to work out at a gym, ride my bicycle and/or go for long power walks before ALS landed me in a wheelchair.  Maybe I would have gotten these afflictions anyway as I aged.  Who knows?  But I know the maxim of keeping the weight high in an ALS patient, was one I followed at the beginning and gained a ton of weight and developed these other lovely conditions. And it wasn't easy to drop weight and change my way of eating to improve the situation, especially when fried foods and sweets do a lot to smooth a lonely soul. And ALS is a very lonely disease. 

I don't believe in New Years resolutions, but managing my fatigue has to be a goal in the future.  My talk of healthy food on this blog, includes those who eat by feeding tube, since many healthy foods can be liquidized and go down the tube.  And I never mean to insinuate that I have a cure for ALS although I have to credit my 10 years since diagnosis [I was diagnosed January, 2004] with more than luck or being "blessed".To claim that I am "blessed" not only presupposes a lot more faith in religion than I have,  but assumes those patients before me who died quickly were "damned".  Why should a bunch of patients, many surrounded by loving families, be damned while I am "blessed"?  That doesn't make sense.  We are no closer to a cure than 150 years ago when this disease was discovered in France.  As an "orphan disease", ALS pins its best hopes on finding treatments that already work for other diseases and can be prescribed "off-label" for ALS.  And -- not that I wish this disease on anyone -- the fact that football players and members of the armed forces are disproportionately diagnosed with ALS more lately, might just bring this disease out of "orphan" status.  You see, other than Rilutek®, we have no other drug or treatment for ALS.  It took many years for Rilutek® to go generic [Riluzole] so until recently if your insurance didn't cover it, it cost about $900 a month.  I have learned that the reason "Big Pharma" charges so much money for drugs is because they have to make the money back, that they spent for R&D [research and development] and other factors that went into the drug -- like advertising.  So, either a lot of consumers have to purchase the drug, or they have to charge big money.  And the reason supplements and food cannot be prescribed as drugs [and regulated by the FDA]?  Well, only synthetic drugs can be patented.  I am currently trying to save enough money to take nutrition courses online.  Until then, I am devouring everything I can find on the subject so I can share the information here.  One day, we will find drugs that exist already that are beneficial for ALS, or enough people will be able to benefit from a new drug.  In the meantime, we have to take care of our immune systems and other bodily functions, so as to have the strength to LIVE with ALS and not DIE from it.  One day, when I was first diagnosed ten years ago, I asked an old friend to come over and spend some time because I was no longer able to visit her ["visitability" is a topic I will talk about in future].  Anyway she said "What will we talk about?  I don't want to talk about a disease", and I said "There are thousands of other topics.  I don't want to talk about my disease either".  So there you have it: let's not only talk about ALS, but the bigger picture -- how we can live in the world as disabled people who are still people, just managing a disease.

I could go on forever, but I composed  this long blog post on and off during one day of daylight hours and the fatigue is setting in. Peace and health to all.