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In my case I have been relapse free for 3 years now on Gilyena and working my tail off. After a scare and 2 years not working I got a new Neuro and he got me on a good path. So I went back to work full time and I pick up side work whenever I can. Which means I end up working 40-70 hours a week.
While everything is going pretty well the fact is I still have MS and that kind of schedule takes a toll so most days I just get home stare at the TV for a couple hours then sleep until I have to do it again the next day. It is hard but after 2 years with a cane and 10-12 hours of sleep a day plus assorted MS issues and just generally feeling like crud 24/7 I feel blessed to be able to do it.
I'm glad this forum is still here for days when I feel up to checking it. Thanks mods for keeping it alive it is a fantastic resource and without it's help during the dark years I'm not sure I would be doing as well as I am now. Hopefully it can guide other people towards successful living with MS.
Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou
Does caring change anything? Can caring improve health?
What do you think?
I've been thinking about Myoak's question.
My feeling is "yes". Connections with others creates resilience. Connections create caring. Caring about others is good for us. being cared about by others is good for us.
Gratitude creates resilience. If we are connected to and cared about by others, those connections offer a lot to be grateful for.
~ Faith MSWorld Volunteer -- Moderator since JUN2012 (now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08. - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
I have so much to be grateful for. I have a lot of "right tribe" friends and acquaintances.
Although MSWorld friends are cyber friends, and we haven't met in person (usually), I hope that we can be "right tribe" acquaintances for each other. I hope that we care for and about each other. We can add to each others' buckets of resilience, which is one factor (of many) that can contribute to health.
~ Faith MSWorld Volunteer -- Moderator since JUN2012 (now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08. - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
Wheel chair kamikaze hasn’t put anything up on his blog since last January ? I liked reading his stuff. I think he had just started rituximab and was having some issues with UTI’s and kidney stones. Does anyone know any updates on him ? As far as MS goes he was pretty informative and really could lay it out there , simply. I’ve been checking now almost every day for nine months and nothing. I fear the worst.
It was one agains't 2.5million toughest one we ever fought.
Wheel chair kamikaze hasn’t put anything up on his blog since last January ? I liked reading his stuff. I think he had just started rituximab and was having some issues with UTI’s and kidney stones. Does anyone know any updates on him ? As far as MS goes he was pretty informative and really could lay it out there , simply. I’ve been checking now almost every day for nine months and nothing. I fear the worst.
oceanpride ~
I haven't seen anything new on Marc's blog for a long time either.
Hope he is ok.
Take Care
PPMS for 26 years (dx 1998) ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? I know when I was working it wasn't like I had the same kind of time to be here as I do now. I am hoping that the chirping sound of crickets that we've been hearing at MSW is a good thing. If we all could get repaired after the fact, none of us would need this site. Until that breakthrough, thanks to all who travel here, and especially those who join/post as well.
Tawanda
___________________________________________ Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994
Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? ... If we all could get repaired after the fact, none of us would need this site.
This is a hopeful thought. Perhaps one reason that we see less traffic on MSWorld is the that younger PwMS have less need for our support?
~ Faith MSWorld Volunteer -- Moderator since JUN2012 (now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08. - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? I know when I was working it wasn't like I had the same kind of time to be here as I do now.
Yes, that is very possible. I became much more active here after I retired on disability.
Also, there are many more MS forums available than there used to be, and there are also MS support social media sites on Twitter, Facebook, etc.
Take Care
PPMS for 26 years (dx 1998) ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
I think it is part of it. I see younger people (20s, 30s, early 40s) at my infusions who are doing well. Tysabri their first DMT, no new relapses since starting on Tysabri, no worsening of symptoms, keeping up with kids and still working. Some of them are now over 5 years out from diagnosis.
I had asked before if they ever came here. They said that they really didn't feel the need. They were also intimidated by reading more progressive stories on any site, as it represents their fears.
They mostly get support and understanding from people getting infusions, and we do have a small closed Facebook group for people at our infusion site. There are a few members who have more progressive symptoms and use canes, walkers, and wheelchairs. I guess they are not intimidated by them because they know their stories.
I know I have joined a closed Tysabri FB group, and I really try to present the new information on Tysabri to encourage others to begin and continue on the drug. I come here once a day to make sure Myoak hasn't downloaded new information that is important to add to my collection, LOL. That man is an unbelievable resource!
Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)?
For sure that is a factor in my case. I started Gilenya during trials and have been on it ever since. I was DX 3 years after first symptoms and started G 2 years after that. So I guess that makes it almost 10 years on G with something like only 2 relapses in that time.
Let me tell you I am super apreciative of those who came before me and suffered so much and built a network of support, and research that has allowed me to have so much success. Sadly the flip side of that is being mostly normal means I'm not on here as much to pass on that support.
So thank you to all the "early adopters" who's stuggles have lead to my success.
Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou
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