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.

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.