APU has a cooling swim

I have 3 phones, a base phone that is plugged in, and two cordless phones, all in this fairly tiny apartment.  The phones all have names.  The names are entered and always visible on the phones.  The base phone is named Sideshow Bob.  The two cordless phones are called Homer and Apu.
Today as always I had no balance when in the bathroom for my usual hourly number one visit.  I try not to travel in this place anywhere without Homer or Apu.  Apu was in my shirt pocket.  I had just ended my visit and reached down to very shakily grab the flush lever when Apu fell out of my pocket.  Still, there was hope.  Apu hit the bathroom counter and started into a spin that would have been highly rated in figure skating... but this was not figure skating.  I reached over with my left hand to grab Apu.  My left side is daily losing strength and coordination.  I tried to grab Apu.  Apu slipped from my grasp like a bar of soap.  Apu flew up in the air and landed on the toilet paper.  Apu bounced like he had been shot from a cannon.  I lost my balance and slipped.  I watched now in surreal horror as Apu smacked into the wall, landed on the back of the toilet and proceeded to do three more perfect spins.  Then helplessly I watched Apu slowly slide off the back of the toilet and pull off a perfect dive into the yellow water of the porcelain swimming hole.  I could not have duplicated this scene in the next 50 days.  Of course, with my good right hand I reached in to pull him out.  Now I have to spend the next five minutes washing my hands, and then thought it wise to rinse and clean Apu as well.  Well, Apu died in a very few minutes.
I grabbed Homer the other phone so he would not be witness to this horrific crime.  I plugged Apu in, as you never know.  About an hour later, I returned to dispose of Apus body.  I found Apu alive and shining brightly, I guess he just needed to dry out.
Now, the happy trio of Homer, Apu, and Sideshow Bob are all reunited

Another rockin Thursday

Thursday, July 4, 2013

Hi everybody,
Well, another eventful afternoon in the life of MS man.  The other day, my case worker told me to quit using my walker and just use my power wheelchair... then put the walker out on my balcony.  Yesterday and today I had three workers due here, yesterday my PSW worker, and today a CCAC volunteer and the case worker I spoke of all booked sick.  I needed my laundry done... just a hamper and two loads.  It was my intention to fetch the walker from the balcony and use it to carry my laundry down to the laundry room and do it myself.  Wrong move.  My legs and balance could not handle getting the walker through my narrow sliding door to the balcony and I fell in a heap.  I always am wearing my panic button, and with this MS, my left leg is near corpse level, so once I am down, no getting up.  Again, third time in the last month, I was down, it is frustrating.  An ambulance was called, three beautiful female paramedics arrived, managed to get me into my wheelchair.  My head now has a big bump from falling onto a table leg.  Luckily, because of my past athletic days so long ago, my head is as hard as stone, and even though there is a bump and it is red, it does not hurt at all.  The paramedics wanted me to go for an ambulance ride to the hospital, but I just needed to get up and go to the toidie.
Today I used the time to build a new shelving unit from the wheelchair, for my living room, just like my shelving unit that was not returned to me from Barrie.  I probably used up any gusto that I had in doing so.  Of course, it all brought back to recent memory of being dumped because I had MS, all my possessions that I could have used and were likely sold to her benefit., and being accused of being a wife beating abusive son of a, which I am not.  I just thought I would never have done any of this to her... I sincerely meant my vows years ago and would have stayed through this disease, even if she had shot at me for pete sakes.  The stressful thoughts with this MS likely did me in today.
Now, rest, a sandwich, and hope the Jays win.  Exciting evening.  But......... I will never, never be robbed of my joy.  Heres to you Holly.
Glenn
 

Thursday June 20, 2013 - A morning in the life

So, it's 9:00am on a Thursday morning and already in the MS life, action.  I thought I had enough in me to go out to my car with my walker on a Timmys Run for a morning coffee.  I made it fine down to my car, but the walker is so big (a beast) and heavy getting it into my cleaned out hatch is always difficult, but I need my morning coffee.  My internal battery was running at 80%, but the loading of the walker took it down to 40%.  Made my Timmys Run for my small with 2 creams.  Unloaded the heavy walker in my parking lot, internal battery of me and my MS now down to 10%... enough to get into my building and into the apartment... barely.  My apartment door is an industrial strength door and is set to close itself.  It is set on kill.  Ten minutes with the walker to get through the door, now battery is 0%.  I tried to get to my chair on the balcony and rest up and recharge my MS battery a bit.  It took me another 5 minutes to go through the sliding door, it is too narrow to take a walker through.  I have no table outside on the balcony which would have saved me.  I tried to place my coffee on the second chair, but this meant I had to bend way over to reach it.  Already at 0%, my knees buckled and I sank slowly into the sleeping position... thank God I went down slowly as it is concrete out there.  I already know, once I am down, there is no getting up.  I managed to do the important things like have my phone in my pocket, and save the valued coffee.  I always wear my Lifeline panic button around my neck so I pressed it for help.  Lifeline called 911, but it took them 40 minutes to arrive... good thing I was not injured, just minor scrapes from going down even gently on concrete.  The paramedics were very nice, lifted me up and into a chair, even warmed up my coffee for me in the microwave.  Resting up for even an hour lying down on concrete recharges the MS battery inside of me a bit.  Now, lets tackle the day... do not sign up for the multiple sclerosis, ever.  My daughter says that she has a table  and 2 chairs in a patio set, and wants to donate to her dad, but I can't go over and get it because I can't carry anything, and my daughter can't fit them into her car.  I wonder what to do.  Anyway, nice day out.  I promise.

Thursday, June 13, 2013 -- MS Clinic Today

I just got home at 4:30pm from my 11:00am appointment with the MS Clinic at University Hospital, London.  A couple of weeks ago they scared me badly when they told me I may not even qualify for government funding for the latest medication.  I was told that you have to be in decent condition to qualify as the medications do not work if the MS has progressed too far.  The medication costs around $35,000 per year and the government is very particular about who gets sponsored, they don't want I guess to waste funds or effort on really sick folks.  Kind of reminds me of being married... for better or worse only we don't want the worst to be too bad.

Well, today, much better news.  They are applying to get me funded on TECFIDERA.  This med is so new that it is approved, but not yet for funding... but it seems the MS Clinic folks can make it happen.  It is weird to be so encouraged by this, a med that will mess with your immune system, but make it longer between MS relapses, which they figure I was having the past couple of months.  They were scared that my relapsing/remitting MS was graduating to a steady progressive type.

Today I could walk with a walker a long way.  I could barely make it 5 feet a couple of weeks ago.  For one examination I had to remove my running shoes (velcro) and was unable to get the left shoe off last time.  Today I whipped both shoes off and put them back on again.  Two weeks ago I could read only the first 5 lines of text in the vision test.  Today I could read everything.

I have now a motorized wheelchair and I am sitting in it right now at my desk.  My victories nowadays are little things like today and the wheelchair.  I have MS.  I will never walk unaided again or play baseball or golf.  I lost a marriage due to MS.  But it all comes into good light when I hold Aria, my new granddaughter.

I promise.

6 - Friday, April 19, 2013 - Trials and Tribs of Rebif

6 - Friday, April 19, 2013

Rebif update - Afer the disaster at Shoppers Drug Mart this past Monday... When I got home I sent off an email to Barbie, Dr. Sarah's (my neurologist) receptionist.  They were acting on it within minutes.  Now I have my Rebif Support Card and it is all set up - so my Trillium Drug Plan is fixed like it was with Copaxone.  I wonder out loud why Shoppers did not recognize my situation, know something was wrong, and try to help out last Monday..........anyway..........
My Rebif nurse Alison made her 3rd special trip to see me all the way from Mississauga yesterday (Thurs.)
So between Alison and Dr. Sarah, they have now set me up on a couple of months of 50% doses.  I am just so scared of the side effects of the 100% dose, even after being weaned onto it.  I start tonight... wish me well.
I went to the MS self-help group meeting this morning (Friday) and I needed a wheelchair once inside... this is getting downright scary.  My friend Manon and her husband Gerry were such a help, I appreciate it so much.  It is so nice now to have good understanding friends... and they aren't even presenting themselves as Christian Ministers... LOL (private joke), but would put the Christian Minister to shame.
Now, thankfully I am free from any obligations for a few days.

Glenn

New Chapter (April 16, 2013) - noon

Hello again all... just had to blog about my great morning this morning... lol lol

I thought that I had it in me to go over to Shoppers Drug Mart this morning and pick up my latest script for Rebif.  I had managed to get over twice before this month to get other prescriptions.  They told me that it was quarterly deductable time again.  When I was on a Copaxone injection per day, the Copaxone folks picked up all of my Trillium Plan deductable except $100/year or $25/quarterly.  On a very limited CPP Disability income, I could then handle the cost of all my meds.  Then I got switched over to Rebif instead of Copaxone.  The first time I went into Shoppers I was charged my $25 quarterly deductable... fine.  About 2 weeks ago I picked up another med and was charged $45 towards the deductable.  Miffed, I paid it.  Then this morning I went over to pick up the latest Rebif script and they wanted another $25 deductable payment.  I refused.  I quit.

Then, I tried to shop a bit because it was a points day at Shoppers.  My left leg absolutely quit working about half way.  I finished by holding on to shelving in the store.  I made it to the checkout, but got in line behind a poor lady also with MS, but in a wheelchair and she wanted to discuss with the clerk about not getting vouchers she should have gotten months ago.  This went on for 10-15 minutes, I almost passed out.  Then a nice young man got me a chair to sit on, and also took my stuff to the car for me.  I went through the Timmys drive through across the street and picked up a coffee.  I drove back home, but had to sit in the parking lot and drink the coffee there.

From the car to the front door took me 30 minutes (about 50 feet).  About 10 feet away I got some help... a man took my grocery pull cart and brought it in and up to my apartment, and a very nice lady got me a wheelchair that we have in the laundry room and took me up to the apartment.  Now, just a long rest, a short nap, and I'll be almost back.  I have contacted my neurologist (email) about the finances and she is getting back to me later.

Still smiling
Glenn

4 - Oh my that Rebif

Monday March 11, 2013

It's 5pm on Monday.  I just spent most of my day in an Urgent Care Clinic in London which was really just a walk-in clinic.  In January 2009 in Barrie, I fell on the ice in the Georgian College parking lot, and within 2 hours my shin was red and swollen three times its usual size.  I had to go to emergency in Barrie, and the emerg doctor had to drill into the leg and clean out an infection from the inside.  That is even more painful than it sounds... lol.  For the following month I had a home-care nurse who repacked the wound.  Double ouch.  Then, re-infection and more drilling and mining for infection nuggets.  Triple ouch.  Since 2009, my shin has been a shade of pink, and it has been called cellulitis.  Then, in the past 2 months, a major infection has taken place there again, thus prompting the walk-in clinic.  The young female doctor took one look, listened to the story, and told me my new Rebif Interferon medication for MS will tend to bandaid the MS by shutting down your immune system and antibodies.  She said that would explain the fact that on a too high dose like I started on, my temp was up over 105F and that would explain the recurring leg infection.  She put me on massive antibiotics for 10 days.  She said the good new is that it doesn't need draining like 4 years ago, so she doesn't have to hire extra staff to peel me off the ceiling. LOL Thats what I like, a doctor with a sense of humour.

Glenn