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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.