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 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.

Sunday, December 8, 2013

Cluttered Space and a Cluttered Mind but the Existence of Angels

I am stuck and it's my own doing.  I was up to over 2,000 emails after Cyber Monday and I was forced to face some truths about myself to figure out that there were a lot of mailing lists I needed to unsubscribe from.  I have had some angels in the past few months, which I will get to later.  But many people have left my life to go pursue other interests and take care of themselves.  I don't bother contacting many people because they think they need to respond to my "how are you?" emails with 101 reasons why they haven't come by and/or kept in touch.  I've learned to back off and let people come to me.  The problem is that fewer and fewer people are caring to keep in touch. "Busy" is a relative term.  When I was working full-time and studying for my Masters at NYU, I saw the people I wanted to see, so "busy" is code for "I am not interested anymore", so I back off.  As everyone knows,  when I lose people from my life, there is little chance to make new friends.  All summer I was waiting for a nice surprise, and two bunny rescue angels came over after Chelsea's near-death crisis.  They noticed my filter light for the air conditioner was on,  and proceeded to clean the filter.  Suddenly they noticed all my coils were corroded and I figured this was probably due to the work that had been done on my building's brickwork the summer before.  The building management had suggested we cover up our air conditioners and leave them off, but this was not going to happen in the middle of July.  So I had been breathing all kinds of junk and toxins, and I have a disease that already compromises my immune and respiratory system.  So the consensus was that I needed a new air conditioning unit.  So my friends looked at me, as I said "yeah I'll get one".

Well, they said "No you won't.  We know you".  So a week later, there was a box at my door from Best Buy, with a new AC unit.  $60 to my assistant super and he installed it.  Now, those are angels!!  All summer long, I waited for another miracle.  The ALS Walk was in late September and my aide Cheryl and friend Louise got me in and out of the car, to be joined by the Wolff family.  A small team this year, but a team nonetheless.  I posted about my team on Facebook and a couple of surprise donations came in, but no bodies to walk with us.  But the donations were somewhat of a surprise -- one from a new friend who has MS and another from a high school friend who also has MS.

I managed to receive a blessing from two new angels.  One is a lady with MS who lives in Brooklyn.  She came out to Queens and took us to Ben's Best.  It is really nice to go out with another person with a disability who really "gets it".  She has wheelchair troubles and I know that we will get together again soon; I know her promises are not empty.  I had another lovely surprise in October.  A bunny-rescue friend who had helped transport Chelsea to the vet during her crisis this spring, met me and my aide Gulshan at the New York Botanical Gardens and then treated us to lunch at a pop-up Japanese restaurant there.  She left with a promise to re-visit the Gardens during the famous train show during December.  I will wait for her to come around if life doesn't get in the way.  If not December, I am sure something will happen with her in the future.  I have a standing invite from a lady in Manhattan [who is with ALSA] for a museum visit, and I have an angel in Manhattan who sends me personal care items every month and would meet me for lunch any time I would ask.  She does enough and will always be my special angel.  My angel volunteer who has been coming for 7 years, had back surgery this summer.  But we got together once a month during fall and will go to a museum in February.  And Louise came a few weeks ago and we ordered lunch in.  I was invited to my sister's home for Thanksgiving.  It was the first time I had seen my family since February.  

I am amid clutter all the time.  And my apartment is nowhere as clean as I would like it to be.  I have to pay $60 for a good cleaning in my studio apartment, and I rarely can spare the cash, especially with the holidays coming and having to squirrel away everything I can for tips fo the building staff and the few Christmas presents I have to buy.  I have boxes and cartons all over the place because nobody wants to go to the storage room in the basement to store and retrieve them.  I now have Chelsea confined in a corner, but have to pay someone to clean her space.  I have a bunch of clutter on top of my dresser and I have to clear drawers to transfer the stuff to.  But this is not easy from a wheelchair.  But I have to do it a little at a time.

And, the emails -- I am finally getting realistic about what mailing lists I really need to be on, according to where I can realistically shop and where I will reasonably be able to go during the rest of my life.  The aides are no longer willing to go with me on social visits.  I can go on Access-a-Ride by myself to meet a friend, but I am deathly afraid of having a bathroom urgency and nobody to help me.  My friend with a disability whom I know from the Concepts Board actually claims to have trained his bowels to empty every morning, and then goes off on his own to study at Queens College.  That is quite a feat and I know this is Too Much Information, so I will stop for now.

Monday, October 7, 2013

Bye bye summer, I hardly knew ye. Watch for drug interactions.

Why did I take so long to update this time?  I don't know.  This summer was a waste for me; it might as well have been winter.  I was fighting such a low-grade depression that I didn't realize it was there.  There are exactly two people who ever get me out.  One had back surgery this summer and the other was busy doing other things.  I was very distracted.  In fact, by the end of the summer, I realized even I had to prioritize.  I stopped my outpatient physical therapy because my knee pain was gone.  I don't believe in taking advantage of my Medicare coverage just because it's there.  Also, I don't know if the therapy was really making it improve or it was just healing on its own.  Now what came in the place of the pain was a "pins and needles" sensation  which my neurologist called a "neuropathy", but couldn't give me a good reason why it appeared.  So he referred me to a rheumatologist which I will see next week.  In all the research I conducted, neuropathy is a result of diabetes, which I do not have.  So this will be very interesting.

So I had asked the ALS Association for one of their volunteers from a new program they have.  I was told they didn't have a "suitable" volunteer for me at this time.  Then, someone there had a conversation with someone from MDA and it came down that they thought my aides should be taking me out.  Well, guess what?  Home health aides are obligated to take me to medical appointments.  And, a few years ago while my main aide was single and had no children living with her, she went with me to my family on Thanksgiving because she didn't care what time she arrived home.  Now she has an infant, a toddler and a husband, as well as a pre-teen who wasn't living with her, but is now.  So life has changed for her.  In the old days, she and I even went to baseball games and a couple of Broadway shows.  Now, she's not so interested in those things.  And two of the aides who loved to sit outside in the park with me, are no longer with me.  And there was a discussion at some point that I should "make them" go places with me.  Well, I don't believe in forcing anyone to do what they don't want to do; that's not a good recipe for a successful relationship.  So I guess ALSA's volunteer program isn't for me; at least they have determined that I don't qualify because I have aides.  Oh well.  So I barely left the apartment this summer except when I forced myself to take a book and sit outside.  Which left me open to "where is your girl?"  [She can't sit out here in the sun for long, so she is inside cleaning up, and I can text her if I need anything, and besides it's really not your business anyway, nosy neighbor who never cared about me in the 9+ years I have this disease].  There were times I became very frustrated and angry and even defeated myself by losing energy and interest in everything. 

So my summer went beyond not seeing a beach or being invited to a barbecue.  Just leaving the apartment and sitting in front of my building was an accomplishment.  I waited and waited for a surprise.  Last summer, my old friend Liz suddenly emailed me to get together, and my cousin Rich came into town with his kids from Portland, Oregon and we had dinner.  No such luck this summer although I waited for family and a surprise friend to suddenly think of me.  My surprise angels came at the end of the summer when a Facebook friend with MS put aside time and taste buds to go to lunch next week.  Also a bunny rescue person who helped me with Chelsea this spring, had become a reader of this blog and asked me if I would like to go to a museum or the Botanical Gardens with her.  Of course I agreed.  Not to mention that I have an open invitation all the time from a friend from ALSA who invites me to a museum all the time.  I think I can convince my aide on duty next Sunday to agree to go to the Botanical Gardens with me.  The problem is the occasional bathroom duty, which can turn to an emergency on rare occasions.  I need to have an aide nearby in case I need her.  So going out in the neighborhood works; going farther, I pray nothing happens that I can't handle with a friend.

Getting back to my neuropathic pins and needles, my neurologist prescribed Lyrica, a medication usually prescribed for fibromyalgia and diabetic neuropathy.  A few days after starting this drug,  I had a very bad allergy episode and I did what I always do -- I took a Zyrtec.  It was Friday night and the allergy symptoms improved almost right away -- bless that Zyrtec.     On Saturday morning, I dropped off to a nap after breakfast and sent the aide to do some errands for me.  When she came back, I heard her yell my name really loudly.  She yelled "oh my God, you scared me.  You were passed out!"  So I fell back to sleep and woke up for lunch.  What I was typing on my iPad wasn't making sense and I felt confused about time and space.  When I woke up that afternoon and saw the cable box had a time of 3:08, I wondered why there was so much sunlight in the room in the middle of the night, and why I was sleeping in my wheelchair.  Why hadn't anyone put me in my bed?  I heard my aide in the kitchen, but still wondered why it was so sunny at 3:00 in the morning.  I was so groggy and discombobulated that I convinced myself I was in Scandinavia where it is sunny 24 hours a day.  Suddenly, my aide came in with the laundry and I wondered who was in the kitchen if the aide was down in the laundry room.  I fell back to sleep, woke up for dinner and couldn't remember an hour later, what I had eaten, or if I had eaten at all.  The night aide came at 7:00pm and I pointed out something big and black which was scurrying from my bed to my dresser and she assured me that there was nothing scurrying around my apartment. 

I don't know how I did it, but I got to the computer and looked up Lyrica drug interactions.  There it was:  do not take Zyrtec, Claritin, Benadryl, Allegra and a listing of any and all antihistamines and allergy pills known to man.  It was bad enough that decongestants became verboten when I was diagnosed with hypertension.  But now what? It was now hay fever season as well as my usual allergies to dust and the rabbit hay.  How will I get through it?  I hope the rheumatologist come up with a solution.

Friday, July 5, 2013

Fair Hearing in Brooklyn

On April 24, I received a letter from New York City that informed me that on May 1, my home care would be discontinued because I never returned my application for recertification of Medicaid, which pays for my home care.  Just to clarify:  I have Medicare for my doctors, hospitalization and drug coverage.  I clarify this because recently, a friend confused the two.  When I said that I intended to change primary doctors, she asked "Is there another doctor in the neighborhood?"  I told her that was a strange question; did she think my internist was the only doctor in Central Queens?  She replied "I mean a doctor who takes Medicaid", and I was stunned.  Not only is my neighborhood #1 in Medicaid claims in all of New York state,  and a doctor who didn't accept Medicaid could never survive in Rego Park, but didn't she realize that I am on permanent disability after a 30-year work history and therefore eligible for Medicare?  Anyway, what necessitates my Medicaid coverage is the fact that I need home care.  Just thought I would clarify that Medicaid is not my primary health care coverage. 

So I still panicked when I heard that my home care was in jeopardy.  However, if I applied for a "fair hearing", my Medicaid home care would be continued without a gap in service.  If my fair hearing wasn't ruled in my favor, I would have to pay back my home care charges from May 1 until my fair hearing judgement.  The issue at hand was that I never received a recertification package, and I thought maybe that the entire procedure had changed because the city agency [CASA] was supposed to be dissolved this year.  Also, this exact thing happened last year and my former case worker -- Jose Perez [retired since last July] was always on top of things and called me even before I got the letter from the city, to tell me "Heads will be getting a threatening letter from the city.  If you fill out the application which I will bring to you tomorrow and return it to me at the end of the week, I will bring your case up to date"  Mr. Perez came to my apartment the next day, Tuesday, and I took Access-a-Ride to the CASA office in Long Island City on Friday.  A week later I received notification that my case was up to date.

So this time, I called my new case worker and assumed he could do the same service for me.  Instead, he insisted that my case was fine until October of 2013.  And finally, after going back and forth with the new case worker, I received a notice in early June that my fair hearing was scheduled for June 14 at 1:30 pm.  I called my case worker again who informed me "I found out that your case is not okay.  I am going to attach the form in an email".  When I advised him that the attachment was corrupted and I could not print it [what else could go wrong?], he offered to come to my apartment on Tuesday, June 11 with the form, which he did.  When he arrived at my apartment, he said that he spoke to some lady in his office who "was in charge of fair hearings" [whatever the hell that means] and this fair hearing guru advised me that I should fill out the recertification form,  get the [50+ pages] of documentation together, and bring it with me to the hearing.  I was then assured that everything would be all right.

Well, a lot this expert of fair hearings knew.  I spent all day Tuesday, Wednesday and Thursday getting together my documentation, which is not an easy task for me.  I needed to scan some of my documents and it is not easy for me to do that in my new wheelchair that doesn't have seat elevation.  Every lift of my printer lid and every stretch across my desk is fatiguing for me.  I find that after I do two or three pages, I have to rest and I am ready for a nap.  Needless to say, my knee pain [a whole other epic saga] was at its peak at that time, and I found myself popping the maximum dose of pain meds [OTC because my internist refused to give me a prescription -- another epic saga].  I found out that even over-the-counter pain relief can put me to sleep and cause inconvenient stomach issues.  Moreover, I had to tilt back my wheelchair every hour or so and put my feet up on the recliner at the whole opposite end of the room from my desk, when my left leg started to hurt too much.  So I had to get together all my documents and take naps and breaks in between.  And my room is so cluttered that my wheelchair doesn't pull up to my file cabinet comfortably [anyone want to invent a wheelchair-accessible file cabinet?].

So what is already a daunting task becomes even more daunting for a person in my condition.  Nevertheless, I felt I was well prepared for my hearing.  How wrong I was!  When I entered the hearing room, there was a judge and a lady [Ms. Pettiford] from the city agency who sends out the recertification forms.  I said I never received it and I had it ready for them, and really naively believed they would say "Thank you, Ms. Cohen, thank you for coming and we will take your recertification."
That's not what happened.  What happened was something like this:
Judge:  Do you usually have a problem with your mail delivery?
me:       [stunned] Well, there is a lady named Esther Cohen on the other side of the building, and
             sometimes I get her mail. [true and I was surprised I was able to answer so quickly]
Judge:   What apartment does she live in?
me:       You know, I don't know, because she sent a young girl once to pick up her mail and when I
              asked her apartment number, she would not tell me, and the doorman has no idea who she
              is, and when I give her mail back to the mailman, he says there is no Esther Cohen in the
Judge:    Then how did you know she exists and how did you find her?
me:         I looked her up online and found a phone number and I called her.
Judge:     Have you complained to the post office?
me:          no
Judge:      Have you complained to the landlord?  After all, you must have missed other important

 I say that I have to think she is illegally living in the building and I had no desire to
 get anybody in trouble.

Anyway, to make a long story short, Ms. Pettiford presented a thick pile of documentation with a mailing history of documentation from her office to my home.  She was a well-dressed and well-spoken woman and I have to say she was mighty scary.  I told the judge that I got very little "snail mail", that most of my bills came by email.  Suddenly, the judge asked for my apartment number and I said it was A11, and she then asked if I was in the habit of putting my apartment number on forms and anywhere I was asked for my address. I said that I made it my point to do that.  Just to prove I was telling the truth, the judge asked me to produce a piece of mail or a form I had filled out with the apartment number, which I did.  She then asked me to produce a piece of mail I had received with an apartment number, which I did.  She thn looked at the mailing history provided by Ms. Pettiford and remarked that my apartment number appeared different ways; sometimes not at all, sometimes correctly, sometimes as 11A and sometimes as apartment 11.  In the end, she requested that Ms. Pettiford correct my apartment number in my records.  I was informed that Albany would let me know of their decision.  On the way out, both Ms. Pettiford and the judge asked if I was okay.  I said I was okay but would feel a lot better if Albany ruled in my favor.  The judge then whispered to me that she felt the judgement would be favorable.

On June 21, a week after my hearing, I heard from Albany that my judgement was favorable and I should submit my recertification as soon as possible.  Upon further inspection, I noticed that I was missing one of the statements of the year's worth of NYSARC pooled-income trust monthly statements I am required to submit.  I requested it from NYSARC and had to wait a week for that.  But I am finally ready to overnight my whole recertification package to my case worker at CASA.

In retrospect, I do remember that my former caseworker never seemed to get my apartment number correct.  Every time he visited me, I had to correct him on that piece of information, as well as other pieces of information.  And the NYSARC statement that I was missing?  I wish I knew if I misfiled it or never received it as a result of my old mail-lady retiring after almost the whole 27 years I have been living here, or did it go to Esther Cohen?  This gives me a heads-up to keep on top of my statements and make sure I receive them all, and be on the alert if I am still around in January of 2014 to chase down my recertification application if I don't receive it by mid-January.  It was a big wakeup call for me to keep on top of everything much better than I have,

And once again, I pose this question: If all this can happen to a person as independent and with total intact cognizance and intelligence as I am, what must elderly and confused people go through?  I am very proud of myself getting through all this, all alone with no family involvement, and facing this judge alone with my iPad to communicate.  I have a father who is no longer able to drive out of his immediate neighborhood and suffering from early dementia, and a sister who has three children, a husband and a full-time job.  The only friend I have who helps me in these things, was not available to go to the hearing with me.  All I had was myself. 

Thursday, May 23, 2013

A Very Tough Several Weeks: Challenge After Challenge

New information:  Rate of ALS is lowest in Alaskan natives and Native Americans.  So maybe something can be learned from studying those populations. Or maybe I should move to Alaska or a Native American reservation.

By now, you would have to be living in a cave or in a coma for the last few days, to not know that Angelina Jolie announced that she had a double mastectomy a couple of months ago, as a result of having genetic testing [for the breast cancer gene -- BRCA1 and BRCA2].  The first thing I thought about was my own mother, who had breast cancer for the first time in 1976 and then had a recurrence in the other breast in 1994.  That second occurrence led to metastasis and unfortunately my mom passed away on October 29, 1995.  My Mother's mother died of breast cancer in 1948 at the age of 50, and my mother's youngest sister died at 35 from breast cancer in 1970.  Now, my mom's younger sister [80 now] and older sister [84?] are both breast cancer survivors.  Faced with that risky family history, I have my mammogram every year, but never had the BRCA test.  But what if I had had the double prophylactic mastectomy that Angelina had?  I still would have gotten ALS.  So, although Angelina Jolie brought her breast cancer risk from 87% to 15%, it doesn't preclude her getting other diseases.  I might have considered taking the same route because I don't need a BRCA test to tell me I am at high risk for breast cancer.  And I still would have gotten ALS, and would have been still at risk for other cancers.  And even if there would have been an intervention to prevent ALS, I wouldn't have taken the opportunity because ALS doesn't run in my family, and was the furthest thing from my mind.

I am having a very painful six weeks.  I had to put a stop to my home physical therapy because of intense pain in my left knee.  The pain still persists.  If I don't sleep on my right side, I don't sleep.  I have to tilt back in my wheelchair much more than before, and prolonged periods at the computer with my legs hanging down, are painful. I hate to take pain medication, but the pain is so unbearable, I have no choice.  My MRI shows no tears or rips and surprisingly, no arthritis [another condition that runs in my family-- my father's side].  So the orthopedic doctor gave me a prescription for physical therapy-- this time to strengthen the knee and calm down the pain.  Not helping the matter was a sore on my left foot from abrasion of my AFOs.  So off to the orthotist I went and she put extra padding in my AFOs and found an "off the shelf" orthopedic shoe that actually fits over my AFOs and will cost half [after needed lifts are put in], than the $800-1,000 initially quoted for custom shoes [which is why I never ordered them], out-of-pocket because Medicare will only cover them if I am diabetic [a disease I have escaped so far]. The whole process of setting up physical therapy has to be started again.  Then, I got a raging spring cold.  Colds have to be managed carefully in ALS patients because they can so easily turn into pneumonia, which can be fatal for us.

My beloved bunny Chelsea ended up at Catnip and Carrots Veterinary Hospital for a week after almost dying.  Last Friday,  she lay in a corner,  not moving and not eating.  Later in the afternoon I offered her some banana.  When she refused the banana, I knew there was a problem.  I contacted my whole network of bunny rescuers. A few offered to come but didn't have cars and could not transport her to the vet.  I might mention that Chelsea had just come out of a crisis -- she had a very sore hock [foot] that necessitated a stay at Nancy's house and trips back and forth to Catnip and Carrots to change her dressing.  Although I knew her sore hock had healed, I thought her lack of movement meant that maybe her hock still bothered her.  Later I had to face the reality that she was in great danger. Mary Ann and Nancy came about 11:00 pm and Chelsea's temperature wasn't too low [in bunnies, the temperature goes down in sickness -- not up like humans], and Mary Ann felt her gut sounds were normal.  But she took Chelsea to her house so she could monitor her temperature.  The next day -- Saturday -- after staying up until 3am to monitor her temperature, administer medication,  and put her on heat -- Mary Ann had someone take her to Catnip & Carrots because she was puzzled about why Chelsea still refused to eat.  The vets said it was a case of bloat, which can come on suddenly and is often fatal.  Had I failed to act, and had Mary Ann not been vigilant enough to make sure the hospital could take her [they were swamped and initially said they couldn't fit her in].  Had she or I waited any longer to take action, Chelsea would be dead.

The other thing I didn't need was a letter from HRA that my homecare would stop on May 1 [I received the letter around a week before that deadline] because I never returned my recertification form.  I had never received a recertification form.  Moreover, I have a document, signed by my caseworker, that says I am certified for homecare until October 31, 2013.  My caseworker says he will work to straighten this out, but in the meantime, I should submit an M11Q [medical request for home care].  So, since my next clinic appointment isn't until July, I have to make a boondoggle trip to my neurologist for an extra exam so he can fill out the form.

My knee makes Access-a-Ride very painful because having my foot on the footrest for any length of time causes pain.  Ditto for any riding in the wheelchair through the street.  Because of this, I haven't had the inclination to leave the apartment, even though there have not been many offers by people to take me out anyway.  I have asked ALSA for a volunteer this summer to go out with me, but they haven't found anyone yet.  I have a problem keeping in touch with people; even when I send an email to a friend asking "how are you?"  they seem to take it as "Why haven't you been around?" and respond with a litany of how busy they are and all they are doing.  Because of this, I have made a resolution to not keep up my part of a friendship.  I can't even ask "how are you?" or give an update on myself without either getting no response, or getting a response that really annoys me.  Why do people always think it is about me?  Or worse yet, when I write to a friend with concern about some issue she is having, why do they always answer with "Don't worry about me.  What you have to deal with is so much worse".  I have come to the conclusion that I cannot even GIVE to a friendship without the other person feeling I am only thinking about myself and/or pimping for attention.  I would rather have truths than people tiptoeing around me, as if I am fragile and might break.  I think I have demonstrated that I am a lot stronger than they think I am.  I can deal with the solitude and isolation I once feared so much that I would do anything to avoid.  I am now in a situation I feared so much, proving you can adjust to anything.