Friday, August 21, 2015

An open letter to my [Former] Primary Care Physician

Dear Dr. R,
I think you may notice very soon (if you haven't already) that I have stopped coming to your practice. Or maybe you will never notice and/or won't care (or maybe will even be relieved to not have to handle my objections anymore). Youbs

However, I feel compelled to tell you why I had to change doctors for the second time in three years. Somehow I think you won't really care, although nowadays you really should.  Let me tell you why you should care about your patients and what they think.  First, there are so many doctors in our neighborhood.  We don't have to put up with substandard care in Central Queens, because there are at least 1,000 doctors within a 3-mile radius, from which we can choose.  Secondly, in this era of social media, it's easy to let everyone know of our experiences.  As a matter of fact, recently on Facebook, a woman in our neighborhood contacted me and asked for a general practitioner recommendation.  I promptly told her to stay away from you, at which time she informed me that she had just made an appointment with your practice and when she heard my feedback, cancelled the appointment with you and booked one with another practitioner on your premises.

Let me tell you the reasons I have changed doctors.  I had a very nice general doctor at the other end of Queens Blvd but since she had moved from spacious quarters at 97-77 Queens Blvd, which she shared with another doctor, she was less able to provide me with quality care.  Her exam rooms in her new location were minuscule and there was no room for my wheelchair. She came up with a solution to give me the last appointment on Wednesday and I had to wait for all the other patients to leave so she could examine me in her waiting area in full view of her [female] office staff.  Despite this being a semi-private arrangement, it still wasn't ideal.  But at least this doctor listened to me.  However, she often rushed me; I sometimes smelled the scent of a pizza which had been dropped off earlier by a pharmaceutical rep, and I could understand her hunger.  As a matter of fact, I had to fast before every appointment for my bloodwork and I felt like going in the back to steal the pizza; thankfully, my wheelchair couldn't fit in the room where the pizza sat. You see, despite her giving me an 11:45 appointment, she was always behind-schedule and by the time she got to me, it was usually about 2:00pm.  I stuck with her until she got sloppy with callbacks and her staff member told me she would call right back one afternoon, and I learned later that she had already left for the day and didn't receive my message about a medicine refill until three days later when she returned from her weekend.  I hate liars, so decided it was time to switch.

I went from the frying pan into the fire.  Even though your office is right around the corner from my apartment, I was worse off with your practice.  First, I quickly learned of  your unavailability between appointments, even to pharmacists.  My pharmacist -- whom I have been using for 30 years -- complains that it is nearly impossible for him to call for a refill on a prescription.  Once, he was so frustrated that he told me he had given up.  So I sent my aide in person; she waited nearly an hour in your waiting area before she could even get the message to you.  And then you told her I had to make an appointment to come see you in order to get the refill. WHAT?? I had just seen you three weeks before so why did I have to see you again just to get a refill?  You never return phone calls, and this concerns me.  How could I have any kind of relationship with a doctor who doesn't return phone calls?

I happen to be a wheelchair user and can barely fit into your exam rooms.  Your "practice-within-a-practice" used to be a furniture store.  The practice owner took a large open space and built exam rooms barely big enough for a doctor and her patient, let alone a wheelchair.  For an establishment which opened post-ADA [American with Disabilities Act of 1990], this is unacceptable.

What is even more unacceptable is the fact that you insisted on GIVING ME A BREAST EXAM IN THE HALLWAY!!  You insisted that "nobody is looking" and was extremely annoyed when I expressed my displeasure.  And, speaking of breasts, why did it enrage you when I asked you for a prescription that I could use for a mammogram at Columbia Presbyterian Medical Center?  I have been going there for the last 20 years, and they are the only facility with a WHEELCHAIR-ACCESSIBLE MAMMOGRAPHY MACHINE !!  And yet, when you handed me a prescription for a local facility and I said I wanted to go to Columbia, you were positively exasperated.  Did I ruin a kickback that you receive from the local facility?  If so, I am sorry because I know doctors don't make as much money as they used to. Oh, and I did have that mammogram appointment in March but when I sent my aide to your office for the prescription, you refused to give it to her unless I came in.  Funny how you told me after my last appointment "see that you don't come back before having your mammogram." and now you won't give me the prescription until I come in.  What???!!!

But, my own exasperation reached a peak three months ago during my last visit.  I waited TWO AND A HALF HOURS in the waiting area until you called me.  Then, not one gesture of apology passed your lips, for having an 11:30 appointment and not seeing you until 2pm.  Might I remind you that I was fasting because I was having blood work?  By the time you examined me, I felt like I was going to faint, and you asked me why I couldn't breathe strongly enough when you examined my lungs.  How many times have I reminded you that fatigue is a hallmark of ALS, as well as weak breathing.? Once again, you told me I should be blowing up balloons for exercise.  Blow up balloons?  You must be dreaming.

Anyway, so after you make me wait two-and-a-half hours and I hand you two pages of carefully-typed information I need you to know -- like request for the mammogram prescription and explanation of why I need to go to Columbia, and full reports on every medical appointment I have had since I last saw you -- you rudely put it in my file without reading it and asked my aide to come into the room.  Next, you told the aide "I need you to talk to me because I don't have time for her [meaning me] to type out her answers on the machine".  I was floored;  I had just waited two-and-a-half hours and not once did you apologize for the delay.  And now you insist on speaking to my aide, who only repeated the questions you asked and I answered.  When my aide noticed that most of your questions were answered on the paper I gave you and pointed that out, once again you were exasperated. That was the last straw.  Such lack of respect for a patient is unacceptable.  I may be in a wheelchair and talk with an assistive device, but it is your job to deal directly with me.  Two-and-a-half hours is way too long for a patient to wait, and don't think I didn't notice that Russian-speaking patients who had appointments later than I did, were taken before me.

I gave you every benefit of every doubt, but you proved to be disrespectful, arrogant and a proponent of "my-way-or-the-highway" doctoring of 50 years ago.  You are not God and I don't have to put up with your bad behavior in this day and age of choice.  I have chosen another doctor who -- by the way -- apologized for making me wait 30 minutes in her waiting room.  I have an email which I can use to ask her questions between appointments, and request prescription refills.  I have already done so, and my prescription was at the pharmacy a few minutes later.  I am very happy with my new doctor and will not hesitate to recommend her;  I will continue to dissuade people from consulting with you.

Fern Ellen Cohen

Will I mail this to the doctor?  Probably not.  Because she will probably just stick it in my file without reading it, like she does with everything else I have given her.  She'll probably just think I died, or went to a nursing home.  Or maybe never notice that I'm gone, or maybe even heave a sigh fo relief that she doesn't have to deal with "the lady who talks with the computer".  Either way, she and I are done.

Monday, June 8, 2015

Walk to Defeat ALS in Manhattan and Ride for Life

 These photos above are of the 2015 Ride for Life, now in its 18th year.  The gentleman seated smack in the middle with the gray beard, is Christopher Pendergast who has survived with ALS for more than 20 years, started the Ride with a team of guys with ALS who rode their wheelchairs to Washington DC from Long Island.  Nowadays, they ride from Montauk all the way to Manhattan.  In the last couple of days, they pass through Yankee Stadium, home of Lou Gehrig, as well as Lou Gehrig's real home in East Harlem.  On the last day, they go over the Brooklyn Bridge, accompanied by a group of bagpipers.  The pictures above are of the closing ceremony which I attended with Louise Foisy and Lynette Wahid.  In past years, I rode from washington Square Park to Columbia University, a leg that the Ride decided to cut out this year to shorten the last day.  For 12 days, ALS patients ride their wheelchairs with walkers alongside them.  Some ride the whole 12 days, and some for a day or two.  But along the way, they are met by many organizations and schools full of children and teens who have raised millions of dollars.  The money goes to grants for respite care and equipment for patients, and to research.  For more information, go to  Christopher is married to Christine [yes, Chris and Chris] and she has been right by his side for several decades, as well as their son and daughter.  They have been a very active family for the cause.  Before ALS, Christoper was a science teacher in Northport, Long Island.

These pics above are of the 2015 Walk to Defeat ALS in Manhattan.  My team was small this year -- Lynette Wahid and Danielle Aquaviva, but we will be collecting donations through October.  My team -- Fern's Fighters -- will also walk in the Walk to Defeat ALS in Eisenhower Park on Long Island on September 19 this fall.  Once again, Danielle designed some cool tee-shirts. They did something different for the Manhattan Walk to Defeat this year.  Formerly, the walk started around the West Village -- like Charles Street -- and ended at West 55th Street.  This was a nightmare for people who came in cars, which they parked at the starting point and then had to get themselves from 55th all the way down to a spot about three miles away where they began.  This year, we started at about Houston Street and ended in the same spot.  Of course, you can't please everyone; there were complaints that the point where we turned around to come back was confusing.  And the pier [45] where the walk started had nowhere for Access-a-Ride to pull in.  So he dropped us at Pier 40 and Danielle called them to change the pickup point for the return to Pier 40.  I should also mention that they served the best ARTISINAL pizza at the end of the Walk.  I honestly don't know why more people don't join us for the Manhattan Walk.  In many ways, I prefer it to the Long Island Walk, especially since I can use Access-a-Ride and take my motorized wheelchair.

Fern's Fighters are registered for the Manhattan Walk and for the Long Island walk to Defeat, which will be on Saturday, September 19.  I would like more people to join us at Eisenhower Park in September, but if you just want to make a donation, go to this link   The new tee-shirt design, by none other than our team designer Danielle "Nellie" Aquaviva -- will be displayed soon.

Thursday, April 16, 2015

NewYork Winter, 2014-2015; Bad Karma All Around: Dad, Aunt Sylvia, Cold, and More.

First of all, check this out.  Some guy mentioned me in his blog and then posted the coolest pics of some of the architecture in my neighborhood.   Some guy by the name of Alan Rosenberg who came to visit me in 2009 loved my neighborhood and some of the remnants of pre-WWII architecture and wrote about it, in his blog [link above or click ]  

Okay, so my last update talked about the losses of a dear aunt and a dear friend -- My Aunt Vicky and fellow ALS warrior Norma Steck-Hess.  But that's not all.  The same day [January 2, 2015] that my Aunt Vicky passed away,  the husband of my therapist also passed away.  Dr. L had been taking a hiatus since her husband went into the hospital for surgery, and then for a few weeks while he was "recovering".  Then she reported to me that he was "deteriorating" and she would need more time off.  It wasn't until mid-January that she emailed me and gave me the sad news that her husband had died.  She then said that she would probably return to her practice in early February.  She ended up further delaying her return to February 23, because she was not ready and wouldn't be able to "be present" for her patients.  As it turns out, I probably would have had to cancel a few sessions due to the weather, which has been "dangerously cold" according to the TV meteorologists.  My apartment was so cold, that we have been wearing hats and layers of clothing INSIDE. 
Okay, so this selfie was taken outside, which wssn't much colder than inside.  I was wearing my pink-framed reading glasses and my sherpa hat that ties under my chin.  And forgot to camouflage my freckled sun-damaged complexion.  This why I don't post pics of myself and don't take many selfies at all -- for various reasons, ALS has made me very un-attractive.

Then later in February,  I heard of the death of another aunt, my Mom's younger [and last remaining] sister in California.  My aunt Sylvia was the one my Aunt Vicky went to live with, when her own husband died.  My aunt Sylvia was 82 and she and I were not close when I was a child.  When I became an adult, Sylvia and I became closer and I found her to be a faithful confidante.  I know she loved me very much, and that is why she could not deal with my illness.  She called me on the phone in the early stages of my disease and could not understand what I was saying.  The shock was too much for her, I guess, because I never heard from her again.  I thought about her many times and considered writing her a letter because she wasn't techno-savvy and didn't have a computer and email.  But laziness and weakness got the best of me and I never did.  It always hurts when people from my past,  freak out from my ALS and completely abandon all contact with me because they just can't handle it.  I have learned to deal with more and more solitude as the years go on.

Here is a picture of my Aunt Sylvia when she was young.  The Vogel girls -- my mom Ruth, and her sisters -- Lynn, Vicky and Sylvia -- were all very beautiful.

But the bad karma doesn't end there.  Bad things seemed to be happening all over my "universe". My 87-year-old Dad was fainting and weak.  He went to the hospital and now is in a rehab facility -- aka extended care.  He hates being there and wants to go home, but he cannot live alone anymore and has to have round-the-clock home care.  He's not too happy about that either.  I can relate because I hated to have my privacy and space invaded by strangers too.  But I have a studio apartment and he has a house.  So he is in better shape than I am because he has a lot more space for another person.  Still, I totally understand.  It's a whole change in lifestyle for him and a new era.  My sister Haley has had to handle the logistics for him via an attorney, but I luckily served as a model as one who has been through the "spenddown" through a pooled-income trust in order to get home care.  Once that is all in place, things will feel a lot better, but it's a waiting game I am all too familiar with. All in all, it's an unfortunate situation that Haley has to handle it all herself.  This is not what we signed up for -- all children [in our case -- both sisters] should be able to share the duty of taking care of an elderly parent.  They call it the "sandwich generation"  but this sandwich is open-faced because I am a slice of the bread that is busy with the full-time job of taking care of myself.  Or is it the other way -- are the children the "bread"around the sandwich or are we the "meat"?

More still:  My friend Danielle lost her bunny Marley and about a month later, Marley's partner Phoebe.  This happens a lot with bunny rabbits; one half of a bonded pair passes away and soon after, the partner goes too.  The same thing happened with Nickels and Angel -- the bonded pair of my friend Deb several years ago.  Bunnies can die of broken hearts.  Another furry friend also passed away this winter -- Abbey  aka Cissy, the 18-year-old cat companion of my friend Louise.  I can't remember ever entering Louise's apartment without Abbey greeting me.  And the human world wasn't spared either -- besides my two aunts and my friend Norma, my friend Deb lost her two grandparents within weeks of each other.  I began to advise people not to come around me, because I was sure I was bad luck.  Danielle then came down with pneumonia last month...whew.

Here is my friend Danielle holding her bunny Phoebe.  They had just lost Phoebe's partner Marley, and Danielle was planning on finding another hus-bun for Phoebe, but then Phoebe passed soon after this picture was taken.  Danielle is bi-cultural like my nieces and nephew -- Jewish mom and Italian Dad.....thus the menorah and Christmas tree [just like at my sister's house]
And the cold!!  This was an especially bad winter, but the heat in my building never worked right all winter.  Now that spring is coming, the heater has been repaired, but we went through torture, often wearing hats and gloves in the apartment.  My building superintendent was fired by my board rather suddenly last month.  Since he is refusing t I spent about two months not going outside; Queens -- ever the forgotten borough -- was a sheet of ice and not good for navigating wheelchairs. AND, with the temperatures at record lows, I risked killing my brand-new wheelchair batteries. So now I am left with pent-up needs for medical and diagnostic appointments.  I guess I know what I will be doing in the coming months -- Access-a-Ride here I come!!

As winter comes to an end, Spring is starting to look much much better. Surinder -- my aide from India who is really into astrology -- says that I am moving out of this crappy karma in April.  Let's hope she is right

Monday, February 2, 2015

What Death Teaches About Life --Loss of another ALS Warrior and a Dear Aunt

Every time I lose someone to death, I am reminded of some very important lessons about life. One of the most important of these is the tenuousness of life.  In the eleven years since my diagnosis, I have personally known many who have died unexpectedly.  Some never seemed to be sick a day in their lives, and some had chronic illnesses and died of something else.  Some were older, some middle-aged and some young.  And that is why it burns me up when I hear "I don't know what to say to you because if I tell you the good things happening in my life, it might make you feel bad"  Not only do I not begrudge anyone happiness; but I also know that these people have to enjoy life now because you never know what will happen tomorrow. Anyway, Renee Lo Iacono said it better than I ever could, in her Huffington Post article "4 Things Death Teaches Us About Life" 


Around  the new year, I lost a dear friend and fellow ALS warrior.  Pictured above, Norma Steck-Hess was a special person.  For 30 years, she was an ER nurse at St. Luke's Hospital in NYC.  There are many theories as to causes of ALS.  One theory is that stress brings on the change in the motor neurons that triggers the disease.  I can't think of any job more stressful than an emergency-room nurse.  Anyway, for most of Norma's adult life, she was a single mom.  But in her 50s, she got married to Bob.  Well, she was diagnosed with ALS a year after they married.  Imagine finally finding love and marriage after retirement and planning a life of enjoying a new spouse and travel and relaxation, only to be diagnosed with a disabling disease a year later.  Norma became a good friend to me, befriending me at my first MDA/ALS support group meeting. I enjoyed many pleasant afternoons and even a Christmas celebration at her beautiful home in Flushing and when I had a problem with a mean VNS nurse, Norma wrote a letter that changed my life.  She knew the CEO of VNS and wrote a letter scathingly condemning the nurse's treatment of me, and lack of understanding of my disease.  From then on,  a sadistic nurse was eating out of my hand.  I was forever grateful to Norma and her support.  In the last few years, I didn't see her because she lost use of her hands and didn't feel comfortable using her eye-gaze device.  I actually suspect she fell into a grave depression.   I will miss her; all in all, she lived 15 years with ALS, which is above and beyond expectations [most patients lose their battle within 2-5 years].  I have learned an important lesson from her death, which is to never lose touch with anyone, even if they seem to be dying.  Yes, it's scary because eventually you will have to mourn them, but eventually if you live long enough, you will mourn hundreds of people, including some you never dreamed would pre-decease you.  I regret not making more of an effort to connect with Norma -- even with a family member -- after she stopped communicating on a regular basis.  Even a monthly card sent to her house expressing that I was thinking of her and praying for her, would have gone a long way.  I shortchanged Norma, but made a promise in her honor, to send more written notes and cards to people via old-fashioned snail mail.  Email is a great invention, but there are still people who cannot or will not use it.  When Norma could no longer use a computer, I should have made more of an effort to reach her, even if she could not reciprocate.

Another loss was my mom's sister Vicky[pictured above on the left; that's my mom Ruth at right] on January 2.  My mom grew up very poor.  Her parents emigrated to the United States in the early 1900s from Austria, and settled in Brooklyn by way of Minnesota. Thank goodness my mom was forever telling us stories about her family, and since I have a good memory, I really should write them down. Vicky was not my aunt's real name; her real name was Elsie.  But she changed it to Vicky and only as a young adult did I find out her real name and promised my mom that I would never tell Vicky that I knew.

Vicky died at 88 years old; my mom would have been 83 if she were still alive.  Basically, my maternal grandmother gave birth roughly every two years.  My mom once told me she only remembers her mom either pregnant or nursing.  And to my knowledge, all the babies were born at home.  My mom and I used to watch old movies together and one of the movies we loved was "A Tree Grows in Brooklyn" -- my favorite book by the way -- and there is a scene where Francie Nolan's mom gives birth at home and asks Francie to boil water and go fetch the midwife.  I was shocked when my mom revealed that she could relate to that scene, because that is exactly what happened in her own house.  They would send my grandfather and my mom's brothers out of the house and the girls would stay with my grandmother during labor,  but they would never stay for the birth.  The gaps in the two-year intervals of births, were babies who died.  I seem to remember there were two babies who were born alive and died as babies, and my uncle Sol died of leukemia at 12.  They say women were accustomed to losing some of their children back in those days, but I don't believe they ever got used to it.  The stress must have gotten the better of my grandma Frieda [Fanny], my namesake, because she died of breast cancer at 50 in 1948,  just weeks after getting her diagnosis.

Getting back to my aunt Vicky,  she was a longtime employee of the famous Roseland Ball Room, which is featured in many films from the 1940s and 1950s.  She never married until her 50s.  When I was 29, I learned that she gave birth "out-of-wedlock" when I was 10.  That explained why we never seemed to see her after that; she gave birth to the baby in a "home for unwed mothers" since single motherhood was a shameful thing in 1965.  Until then, I slept over my grandfather's house in Bensonhurst, Brooklyn many Saturday nights when my parents went out.  My grandfather's house also had the unmarried siblings of my mom living there -- my uncle Simpson, my aunt Sylvia and my aunt Vicky [and my aunt Lynn between marriages] because back in those days, single children -- even adults -- stayed with their parents when they didn't marry.  Anyway, I loved those sleepovers because the next morning, aunt Vicky would always make me pancakes with Log cabin syrup and then take me to Nelly Bly Playland, where we would go on the rides; then we would go to the local playground and swing on the swings.  Because Vicky was so pretty, all the men would hit on her, but she would tell me to go along with the story that I was her daughter so they would stop bothering her.

Vicky married in her 50s to a local policeman named H.  I never met him, but I saw pictures of him.  He was a good-looking gray-haired man who apparently was fighting his own inner demons.  Shortly after they got married, my aunt Sylvia moved out to Mission Viejo, California near San Diego.  My mom and I took a trip out there in 1987 to see my aunt Sylvia while I was still working at Aeromexico and had my flight benefits.  Vicky and H. had also moved close to her.  Years earlier, my uncle Irving had moved his family to Huntington Beach in Orange County, so he was the one who got Sylvia, Vicky and H., and later on my Uncle Simpson settled with the long-distance moves.   During that trip, my mom and I got to hang out with Sylvia and Vicky.  During this trip, he was in Brooklyn so I still didn't meet him.   I now know that alcoholism is usually a way of "self-medicating" an often-undiagnosed mental illness such as bipolar disorder, depression or even schizophrenia. In the 1980s H. was in recovery from his alcoholism.  Because he was a retired cop and worked as a security guard, he had a legal licensed gun at home.  And quite shockingly, he used that gun to commit suicide with my aunt Vicky in the next room.  Vicky was never the same after that.  Such is the pattern of suicide -- when the plan is in place, the patient seems to be in great spirits, and the ones left behind in the cloud of helplessness and shock, are left to suffer seriously.  Vicky moved in with Sylvia and mourned H. for the rest of her life.  One day after my uncle Simpson suffered a heart attack and Vicky, Sylvia and Irving came to Brooklyn to be with him,  I took Vicky to McDonald's on Kings Highway and she relived H.'s last morning with me, while pulling out of her purse a worn and tattered copy of H.'s typewritten resume.  I knew at that moment that she would never get through the trauma and would forever suffer from PTSD,  like an eternal veteran of a war none of us could never understand.

When I think of Vicky and H., I wonder how she lived so many years after he left this world.  Was it a blessing or a cruel curse?  and I think of Norma and myself, struggling so hard to outlive a death sentence imposed on us by a disease and the medical profession.  

Addendum:  I have since removed certain sentences from this story and used only the first initial of my aunt's husband.  I received angry comments from the daughter of H., accusing my aunt of some very disparaging acts.  When  changed the URL of this blog, all comments disappeared, and I found it best that this happened.  There are two sides to every story, and my side is that I lost a loving aunt, who -- like all of us -- was far from perfect.  But -- in the end -- this is my blog and it is written from my point of view.  Out of respect for someone who isn't here to defend himself, I made certain adjustments, but I am not obligated to present a view of my aunt which disparages her memory.

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.