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
Friday, 19 April 2013
Tuesday, 16 April 2013
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
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
Monday, 11 March 2013
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
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
Saturday, 9 March 2013
Saturday Night with the new medication
Saturday, March 9, 2013
Back about 6 weeks ago, I started on my new injectable Interferon MS medication. The young nurse who got me started forgot to tell me to gradually get to the full dose. I am supposed to take 20% of that dose for 2 weeks, 50% for another 3 weeks, then graduate to the full dose. I mistakenly started on the full dose. What this Interferon does is give you flu-like symptoms for about 12 hours. When my body temp is raised like that (from the flu-like symptoms), my MS tends to react violently to any raised body temp. This is why I will need a special A/C for the warmer months. On that full dose right off the bat, my body temp went over 41 degrees C (105 degrees F), thus resulting in my two 911 calls with total immobility for 10 hours. I am now just at the end of the 20% dose and graduate next week to the next increment, 50%. So far, so good. By April, I should have weaned myself back on to the 100% dose, which I have been assured by many, now will be ok since my body is getting used to it. I am still very scared of that medication. I am still a happy guy and looking forward to working on my collctions again and reading my eReader on my balcony while I sip on a Timmys coffee.
Glenn
Back about 6 weeks ago, I started on my new injectable Interferon MS medication. The young nurse who got me started forgot to tell me to gradually get to the full dose. I am supposed to take 20% of that dose for 2 weeks, 50% for another 3 weeks, then graduate to the full dose. I mistakenly started on the full dose. What this Interferon does is give you flu-like symptoms for about 12 hours. When my body temp is raised like that (from the flu-like symptoms), my MS tends to react violently to any raised body temp. This is why I will need a special A/C for the warmer months. On that full dose right off the bat, my body temp went over 41 degrees C (105 degrees F), thus resulting in my two 911 calls with total immobility for 10 hours. I am now just at the end of the 20% dose and graduate next week to the next increment, 50%. So far, so good. By April, I should have weaned myself back on to the 100% dose, which I have been assured by many, now will be ok since my body is getting used to it. I am still very scared of that medication. I am still a happy guy and looking forward to working on my collctions again and reading my eReader on my balcony while I sip on a Timmys coffee.
Glenn
Saturday, 2 March 2013
2 - Another Saturday Night
Here is a short response to all of the people who have supported me and also who have wondered why I took my blog down this week. I will try my best to not say anything negative here, and you're always welcome to further details, just inbox or privately message and I'll be happy to answer the best I can, positively.
I saw my neurologist this past week. I would run through a stone wall for her, I admire her that much. She dismissed everyone else from the room and quietly told me that the ex must have somehow got into my blog and had phoned her (the neurologist) and left a message of complaint. I have a neurologist who is completely in my camp and is trying to help so much with this MS. I had tried to write that blog as honestly and tactfully as I could, but I removed it anyway because the blog was just my way of dealing with a marriage failure, and I will not tolerate any more the ex involving my family or my doctors... period.
I had to go to the neurologist because I am changing MS medication from one injection med to another kind. Two attempts in January resulted in two 911 calls, a totally terrible reaction. It turns out that I was on 5 times the dosage I should have been on. The Rebif company (the new med) twice this week sent a nurse especially for me only to straighten this mess out. She had to come from Mississauga both times... just to see me in London. I am enjoying the attention, but am disheartened at how serious the MS has become.
I decided to drive to the hospital this week, but did so on a terrible weather day... the parking lot may as well have been 25 miles from the hospital. I didn't make it even half way there in the 100 km winds, but I was rescued by a porter who very nicely took me in a wheelchair to my appointment and after the appointment all the way back to my car. Thank God for nice folks.
Speaking of nice folks... today our Divorce Care group met for a pancake breakfast social outing at McLauglin Family Pancake place out in the country just outside of London. A very rustic place only open for six weeks this time of the year as they have acres of trees that are tapped for sap, with quite the syrup operation. Wow. The place smells of the wood fire outside that they use to make the syrup. That smell reminds me so much of the Bruce Penninsula. My fav smell I think. A good old fashioned meal, all you can eat pancakes, a 30 pound (lol) jug of syrup at each table, a huge delicious sausage, fried taters, fruit salad, bean salad and bottomless coffee or tea, all for $11. This place is simple, but a gem.
The Divorce Care leader had to lend me a shoulder so I could negatiate from the Pancake place back to my car parked on the county road... a very nice man... all non paved lol. I dropped my cane at one point inside, and there was a rush of wee kids to pick it up for me... just as things should be all the time.
More to come on all the positive things that is my life now coming soon. Thanks for reading and sharing.
Glenn
I saw my neurologist this past week. I would run through a stone wall for her, I admire her that much. She dismissed everyone else from the room and quietly told me that the ex must have somehow got into my blog and had phoned her (the neurologist) and left a message of complaint. I have a neurologist who is completely in my camp and is trying to help so much with this MS. I had tried to write that blog as honestly and tactfully as I could, but I removed it anyway because the blog was just my way of dealing with a marriage failure, and I will not tolerate any more the ex involving my family or my doctors... period.
I had to go to the neurologist because I am changing MS medication from one injection med to another kind. Two attempts in January resulted in two 911 calls, a totally terrible reaction. It turns out that I was on 5 times the dosage I should have been on. The Rebif company (the new med) twice this week sent a nurse especially for me only to straighten this mess out. She had to come from Mississauga both times... just to see me in London. I am enjoying the attention, but am disheartened at how serious the MS has become.
I decided to drive to the hospital this week, but did so on a terrible weather day... the parking lot may as well have been 25 miles from the hospital. I didn't make it even half way there in the 100 km winds, but I was rescued by a porter who very nicely took me in a wheelchair to my appointment and after the appointment all the way back to my car. Thank God for nice folks.
Speaking of nice folks... today our Divorce Care group met for a pancake breakfast social outing at McLauglin Family Pancake place out in the country just outside of London. A very rustic place only open for six weeks this time of the year as they have acres of trees that are tapped for sap, with quite the syrup operation. Wow. The place smells of the wood fire outside that they use to make the syrup. That smell reminds me so much of the Bruce Penninsula. My fav smell I think. A good old fashioned meal, all you can eat pancakes, a 30 pound (lol) jug of syrup at each table, a huge delicious sausage, fried taters, fruit salad, bean salad and bottomless coffee or tea, all for $11. This place is simple, but a gem.
The Divorce Care leader had to lend me a shoulder so I could negatiate from the Pancake place back to my car parked on the county road... a very nice man... all non paved lol. I dropped my cane at one point inside, and there was a rush of wee kids to pick it up for me... just as things should be all the time.
More to come on all the positive things that is my life now coming soon. Thanks for reading and sharing.
Glenn
Sunday, 17 February 2013
Glory Days
Glory Days
February 17, 2013
**Borrowed from an article on CNN.com**
************
I treasure the memories of my glory days in sports, music, mathematics, work, and family. My collection of tees in the closet includes special memories with sports, some jobs I have had, some family, and a drum/bugle corps tee from 1975 where with the Midlanders of London we took the Canadian championship. East London Sports softball tees, family tees that say "Not In My House" and "I Can Fix Anything", gifts from family. Every tee was earned with memories, sweat and many hours of practice and preaching. I am proud of them all and thankful to have lived such a great life so far.
My life now includes multiple sclerosis. I sure didn't see this coming back then. Now it is time to listen to other's glory days, listen to things that "used to be" due to such an unpredictable disease. It is time to be thankful for what used to be a part of my life, and what now my life consists of. I want my daughters to be proud of me, not anymore that I can hit a baseball further and harder than anyone else on my team, but proud of me that I have survived MS and have gone on to helping others with MS.
I am proud of my family. All of this may take more work, practice, and sweat than I have ever dedicated to anything, but if I ever earn a multiple sclerosis tee, it too will have a place of honour in my closet.
Happy Family Day
Glenn
February 17, 2013
**Borrowed from an article on CNN.com**
"You can tell a lot about a person by the T-shirts they wear. Each T-shirt has a story to tell -- a story that, in some cases, can span decades. I, myself, have favourite T-shirts.
I still have those T-shirts. Today, they are resting safely on hangers in a closet at home. They’re a tad (very) tight, but I still have the tees and everything they represent. To me, they stand for countless hours of hard work and sweat.
When I die, I want the people packing up my belongings to find my collection of old T-shirts.
If only they knew about the hard work that went into earning those T-shirts. Those T-shirts will have a story to tell, too."
I treasure the memories of my glory days in sports, music, mathematics, work, and family. My collection of tees in the closet includes special memories with sports, some jobs I have had, some family, and a drum/bugle corps tee from 1975 where with the Midlanders of London we took the Canadian championship. East London Sports softball tees, family tees that say "Not In My House" and "I Can Fix Anything", gifts from family. Every tee was earned with memories, sweat and many hours of practice and preaching. I am proud of them all and thankful to have lived such a great life so far.
My life now includes multiple sclerosis. I sure didn't see this coming back then. Now it is time to listen to other's glory days, listen to things that "used to be" due to such an unpredictable disease. It is time to be thankful for what used to be a part of my life, and what now my life consists of. I want my daughters to be proud of me, not anymore that I can hit a baseball further and harder than anyone else on my team, but proud of me that I have survived MS and have gone on to helping others with MS.
I am proud of my family. All of this may take more work, practice, and sweat than I have ever dedicated to anything, but if I ever earn a multiple sclerosis tee, it too will have a place of honour in my closet.
Happy Family Day
Glenn
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