My Life Mostly in Bed [Cleaner Than it Sounds] With a Broken Tibia

I have now spent my first month mostly flat on my back in bed.  Unfortunately, this isn't as fun as it sounds.  I am sadly alone while in bed -- what a waste!!  But I have to spend at least another month in this position -- and sadly alone.  I went for my one-month followup with my orthopedist Dr. Radnay and he is pleased with the way my tibia is healing, but not confident enough to let me go cast-less yet.  So I have graduated to a hard cast which stops below the knee; this is a slight improvement on the hard cast I had going past the knee.  At least now I can bend my right leg at the knee -- for what it's worth.  I still can't get into a shower and wash my hair.  Trust me -- dry shampoo doesn't cut it, and for reasons I will elaborate further below, it's not really practical yet for me to go to the salon to get my hair washed.

First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg.  And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can.  This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment.  I can't go tootling around the neighborhood, especially in cold weather.  My right foot is exposed and I don't have a sock big enough to go over the cast.  Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement.  When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground.  So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement.  Another accident is just what I don't need.

I also have to ask for every little thing I need.  Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table.  But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard.  So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table.  They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table?  I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard.  And, for the best possible position, my head has to be far back to the top of the bed.  I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed,  I can sense their pain.  The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.

Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes.  In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together.  I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate.  Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit.  Who needs a man? [although a man would be nice too].  And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded.  On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder.  I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet 

There is a good reason why I have more room in the apartment, and I will give more details next time.  Right now it's time for me to go back to my bed where it's difficult to type. Future projects:  paint the apartment, get a couple of new appliances, and move some other things around.  These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others.  Back to my bed -- unfortunately, alone.



 

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.