A wonderful day in the park for my birthday with family

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Resolutions and letting go of things that no longer work

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

What resulted from all this was a very full mailbox, including every healthy eating mailing list I could find.  At one point toward the end of the year, I had 2000+ emails in my inbox and emails from close friends got lost in the melée.  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.

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.

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.