I am moving, the blog that is. You can now visit my new blog at:
blog.missionms.org
Phil
Saturday, March 22, 2008
Missed
I missed the March 20Th self imposed deadline for getting the Mission:MS website launched. I always thought that building a website was real easy, wrong, wrong and double wrong. I have 70% done which were the easy parts, now comes the remaining 30% of pain.
I had a Doctors visit this week and have been given the option of switching my main medication Copaxone, to a new one Tysabri. After some research I have decided to make the move. As if the Dr didn't know it when he mentioned the new drug, he was just taking the horse to water. I now just need do inform the him and the clinic. The reason for the change you ask, no change in my base symptoms. So 7 months of sticking myself each day has made no difference, it was still the right move from the beginning but now on to a hopefully more effective treatment. This new drug is a once a month IV infusion, So even with my feeble mathematics that's on average 29 less needles a month.
What fun.
Happy Easter.
Phil
I had a Doctors visit this week and have been given the option of switching my main medication Copaxone, to a new one Tysabri. After some research I have decided to make the move. As if the Dr didn't know it when he mentioned the new drug, he was just taking the horse to water. I now just need do inform the him and the clinic. The reason for the change you ask, no change in my base symptoms. So 7 months of sticking myself each day has made no difference, it was still the right move from the beginning but now on to a hopefully more effective treatment. This new drug is a once a month IV infusion, So even with my feeble mathematics that's on average 29 less needles a month.
What fun.
Happy Easter.
Phil
Monday, March 17, 2008
George L Geisler or Larry
Our friend Larry died yesterday.
When my wife and I moved to the USA in 1993, Larry was the President of the company my wife worked for, Larry helped us both getting to grips with the big apple. He took us to our first Yankee game ( they beat the Redsox, Yippee), and explained some of the mysteries of you lovely Americans, I am still a little confused about you all though.
Sad.
But happy at the same time, I am not one to sprout the usual things we all say when people die. So here are a few things I remember about Larry.
He came from Iowa, he mentioned it often and always with a smile.
A veteran of Vietnam, wounded and not one to talk about his time there.
Silly Putty, on his desk was a well used ball of the stuff.
Larry had one of those loud but soft voices, like a sonic boom that cheers you up.
He had a laugh that only god would give someone who knew how to use it.
Smoking, Smoking, Smoking. I think Marlboro stock went down when he quit.
He was also exceptionally proud of his son Larry Jr or I should say Dr Geisler.
There are a lot of people mourning Larry, but I look at it this way. Imagine life if you hadn't known him at all........
That would be even worse.
P
When my wife and I moved to the USA in 1993, Larry was the President of the company my wife worked for, Larry helped us both getting to grips with the big apple. He took us to our first Yankee game ( they beat the Redsox, Yippee), and explained some of the mysteries of you lovely Americans, I am still a little confused about you all though.
Sad.
But happy at the same time, I am not one to sprout the usual things we all say when people die. So here are a few things I remember about Larry.
He came from Iowa, he mentioned it often and always with a smile.
A veteran of Vietnam, wounded and not one to talk about his time there.
Silly Putty, on his desk was a well used ball of the stuff.
Larry had one of those loud but soft voices, like a sonic boom that cheers you up.
He had a laugh that only god would give someone who knew how to use it.
Smoking, Smoking, Smoking. I think Marlboro stock went down when he quit.
He was also exceptionally proud of his son Larry Jr or I should say Dr Geisler.
There are a lot of people mourning Larry, but I look at it this way. Imagine life if you hadn't known him at all........
That would be even worse.
P
Saturday, March 15, 2008
Rant
I think it’s time to rant about life, and the reason for the rant is I am sitting on the 6.16pm train to Dover from Penn station and my F*$king legs hurt. When I say hurt I mean really hurt. I have been busy in the store so I have been on my feet most of the day, no chance to rest which is so important with the PAIN IN THER ARSE (MS). So I won’t say I am feeling sorry for myself but it started me thinking about the little F&^K (MS) that has crept in to my life and forever f^&ked up something that was moving along so nicely. And the longer I am dealing with it the more I learn to hate its insidious ways. There are very few things in this world I hate (I even hate the word hate) but the F&^K (MS) is now top of the list, right above broccoli, yes I really don’t like broccoli. It reminds me of green turd (a poo in American) with a tail YUCH!
So here are the top ten things I really hate about MS.
1- Pain
2 -Getting up in the morning, and having to inject my Copaxone. The site reactions are a treat, nice red mounds of pain.
3 –Pain.
4-Fatigue, Imagine getting up in the morning after 10 hours of good sleep and still being knackered (exhausted to you Americans). NOT FUN
5-Pain, yes this is getting repetitive and I am not a being a big baby but this can really be quite tiring.
6-Having to take 150mg of Lyrica and 200mg of Provigil a day, these drugs are still chemicals and god knows what else they are doing to me. I am still not convinced that they work all the time, but I am being a good little boy and popping them when told.
7- Did I mention the pain.
8-MRI machines, a great advance in medical science, but I loathe the friggin thing. Over the last 10 months I have spent about 16 hours in them, hours I will never get back.
9- The pain, it may be boring having to read this so many times, but that is not as boring as the pain!
10-The “You look so good” line that people say with regularity. I look good because of genetics not because of anything else. I feel like shit most of the time.
There you go my nice little rant is over, done and finished. Boy do I feel better now.
Wow this is good it gets me thinking about even more about topics to Rant about. Maybe my next one will be about, New York Taxi Drivers and why we should test cosmetics on them and not on animals.
But no I think one rant a year is more than enough, I will go back to my normal little grizzles.
So here are the top ten things I really hate about MS.
1- Pain
2 -Getting up in the morning, and having to inject my Copaxone. The site reactions are a treat, nice red mounds of pain.
3 –Pain.
4-Fatigue, Imagine getting up in the morning after 10 hours of good sleep and still being knackered (exhausted to you Americans). NOT FUN
5-Pain, yes this is getting repetitive and I am not a being a big baby but this can really be quite tiring.
6-Having to take 150mg of Lyrica and 200mg of Provigil a day, these drugs are still chemicals and god knows what else they are doing to me. I am still not convinced that they work all the time, but I am being a good little boy and popping them when told.
7- Did I mention the pain.
8-MRI machines, a great advance in medical science, but I loathe the friggin thing. Over the last 10 months I have spent about 16 hours in them, hours I will never get back.
9- The pain, it may be boring having to read this so many times, but that is not as boring as the pain!
10-The “You look so good” line that people say with regularity. I look good because of genetics not because of anything else. I feel like shit most of the time.
There you go my nice little rant is over, done and finished. Boy do I feel better now.
Wow this is good it gets me thinking about even more about topics to Rant about. Maybe my next one will be about, New York Taxi Drivers and why we should test cosmetics on them and not on animals.
But no I think one rant a year is more than enough, I will go back to my normal little grizzles.
Thursday, March 13, 2008
MissionMS.org
OK, it is March 10th 2008, I am going to have the Mission:MS website up and running within 10 days.
I have had a creative block ( could be the weird way my brain is set up and not a block at all ). But the last 24 hours I have made a few major advances. I sit on the train each day now typing away, creating the text for the Site. I have acquired pictures ( borrowed more like from other MS sites )and created text ( plagiarism sounds so harsh, but I have borrowed content from multiple websites ). This reminds me of being back at school and having to do a report, you hit the books and rewrite the printed text. I can see from a lot of the websites this is the standard mode of operation. I am not alone and I hope no one gets offended.
A really good disclaimer will be on the website.
Phil
I have had a creative block ( could be the weird way my brain is set up and not a block at all ). But the last 24 hours I have made a few major advances. I sit on the train each day now typing away, creating the text for the Site. I have acquired pictures ( borrowed more like from other MS sites )and created text ( plagiarism sounds so harsh, but I have borrowed content from multiple websites ). This reminds me of being back at school and having to do a report, you hit the books and rewrite the printed text. I can see from a lot of the websites this is the standard mode of operation. I am not alone and I hope no one gets offended.
A really good disclaimer will be on the website.
Phil
Monday, March 10, 2008
Physical Therapy
Today was a visit to the St Barnabas Physical Therapy center, where the lovely Patricia kicked the sh*t out of me. Being Monday I usually get Andreas a nice chap from Greece who loves Football ( that's soccer to you Americans ). I really enjoyed it when we discussed Manchester United ( horrible Team ) being beaten by Portsmouth 1-0. That is similar to the New York Yankees being beaten by a Minor League Girls Team- BTW nothing against Girls baseball.
Back to my workout, Patricia in her infinite wisdom decided to increase all of my exercises. I though working out was boring before, we attained new levels today.
But I did all the physical tortures and still left the clinic on my feet, I had thought of pretending to be exhausted by I think they all see right through me now.
So I am really tired, but whats new.
P
Back to my workout, Patricia in her infinite wisdom decided to increase all of my exercises. I though working out was boring before, we attained new levels today.
But I did all the physical tortures and still left the clinic on my feet, I had thought of pretending to be exhausted by I think they all see right through me now.
So I am really tired, but whats new.
P
Thursday, March 6, 2008
Switzerland
I am off to Switzerland the first week of April, this is a business trip so I will have do some work.
I will add some pictures of the trip when I get back.
P
I will add some pictures of the trip when I get back.
P
The Train
I never thought that my morning commute would be so relaxing as well as being productive.
As you age ( I am still a spring chicken, cluck cluck) you begin to cherish moments where you can switch off from the world. I never thought it would be on the 6.56am to Penn Station, with my fellow 500 travellers. But I now am able slip my headphones in my ears and turn my Ipod on and then mentally drift. The 35 minute ride in to New York ( That is if the blooming train is on time) relaxes me no end. It gives me the chance to let my mind wonder and dear reader this is one scary mind to do that with. I don't know why but this half hour riding towards 10 hours of work I enjoy, yes I am a little warped. Maybe it is the familiarity of seeing the a New Jersey Transit carriage, transporting the same faces each day. We all have our position on the platform, and if the driver isn't being a silly sod the train stops at identical point each day. Maybe not having to think about the trip frees us. And every once in a while my man NORMAN COOK- better known as FAT BOY SLIM- plays on my Ipod and my world returns to full speed ahead.
As I have said before listening to music, is defiantly life's soundtrack.
Phil
As you age ( I am still a spring chicken, cluck cluck) you begin to cherish moments where you can switch off from the world. I never thought it would be on the 6.56am to Penn Station, with my fellow 500 travellers. But I now am able slip my headphones in my ears and turn my Ipod on and then mentally drift. The 35 minute ride in to New York ( That is if the blooming train is on time) relaxes me no end. It gives me the chance to let my mind wonder and dear reader this is one scary mind to do that with. I don't know why but this half hour riding towards 10 hours of work I enjoy, yes I am a little warped. Maybe it is the familiarity of seeing the a New Jersey Transit carriage, transporting the same faces each day. We all have our position on the platform, and if the driver isn't being a silly sod the train stops at identical point each day. Maybe not having to think about the trip frees us. And every once in a while my man NORMAN COOK- better known as FAT BOY SLIM- plays on my Ipod and my world returns to full speed ahead.
As I have said before listening to music, is defiantly life's soundtrack.
Phil
Tuesday, March 4, 2008
March
Crikey March has started, a month of birthdays (mine included) and the clocks going forward.
A few updates first:
I have to admit I am very very slowly setting up the Mission:MS website. I am a professional talker, when it comes to putting the chat in to words and pictures I have enormous trouble. I have been very lucky in being sent Thom Phar from GoDaddy.com to help me through this process, I must be driving him crazy (he always sounds calm though).
Had another MRI marathon yesterday, I think my Doctor really likes me, judging by how many pictures he has of my internal organs and nervous system. I do have to admit I see the pictures and I am very impressed how good they look. I may ask Fiona if I can frame one and hang it on the wall of the living room.
Also a two-hour trip to the dentist in the morning for a root canal. All I can say is I left with a numb mouth and number wallet.
Thinking back to the MRI, what a busy place the imaging center was. Full of worried looking people, It is a shame that I feel like an old hand at this lying in an MRI machine. I am what you would call Panamax with these machines and this time two technicians the calm Andre and efficient Jay got me through. God bless them both. My last experience wasn’t good I was beginning to panic, but I think the pain from the root canal took my mind off the whole thing this time.
A few updates first:
I have to admit I am very very slowly setting up the Mission:MS website. I am a professional talker, when it comes to putting the chat in to words and pictures I have enormous trouble. I have been very lucky in being sent Thom Phar from GoDaddy.com to help me through this process, I must be driving him crazy (he always sounds calm though).
Had another MRI marathon yesterday, I think my Doctor really likes me, judging by how many pictures he has of my internal organs and nervous system. I do have to admit I see the pictures and I am very impressed how good they look. I may ask Fiona if I can frame one and hang it on the wall of the living room.
Also a two-hour trip to the dentist in the morning for a root canal. All I can say is I left with a numb mouth and number wallet.
Thinking back to the MRI, what a busy place the imaging center was. Full of worried looking people, It is a shame that I feel like an old hand at this lying in an MRI machine. I am what you would call Panamax with these machines and this time two technicians the calm Andre and efficient Jay got me through. God bless them both. My last experience wasn’t good I was beginning to panic, but I think the pain from the root canal took my mind off the whole thing this time.
Saturday, March 1, 2008
Lazy
Saturday morning, I am just awake and getting ready to go to work.
I realise how long it has been since I added a few words here, shame on me.
I will be adding more later this morning.
P
I realise how long it has been since I added a few words here, shame on me.
I will be adding more later this morning.
P
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