2 things have been making a big difference in my life.
the 1st is medical: my tysabri treatment. my energy is significantly increased in endurance. it used to be that one active day would need a resting day to follow. now, i can have 3 active days in a row and just need a good night's sleep. gone are the days when activity overwhelmed my body. i still don't push myself too hard. it's just nice not to spend half my time recuperating after doing things i enjoy...visiting friends, strolling around my neighborhood, etc.
the 2nd is spiritual/emotional/mental: using the ideas from 'the secret' [see my last post]. the change in perspective has made everything a bit better. i'm much less frequently sad. when i do get upset, i can temper it w/ images of my future able body. just the thought that 'my able body' is possible [though i have no idea how] makes everything more bearable. visualizing takes practice. my mind tends to wander. so practice i do. writing seems to help me stay focused. my images are not fancy. i see myself in everyday activities - stepping into the shower, standing up from the toilet, working out at the gym. the process is strengthening my spirit, rejeuvenating my hope. i will not forfeit my dreams.
this disease is so frustrating!
i've had enough! though, 'enough' keeps growing.
Thursday, August 5, 2010
Friday, May 14, 2010
the secret
i just saw a movie called 'the secret.' the secret is the law of attraction. the thoughts we have literally draw things to us. all along, i've been expecting my ms to worsen. it has. well, no more.
i'm doing what the movie suggests.
i ask for what i want.
i believe it will happen.
i am open to receive the good health that i seek.
i give thanks every day for the richness of my life.
i'm visualizing myself in an able body - standing to hug my husband when he comes home from work, walking around my neighborhood, swinging at the park with my niece. i don't know how it will happen. i ask, i believe, i will receive.
if you can, see the movie. it is empowering.
i'm doing what the movie suggests.
i ask for what i want.
i believe it will happen.
i am open to receive the good health that i seek.
i give thanks every day for the richness of my life.
i'm visualizing myself in an able body - standing to hug my husband when he comes home from work, walking around my neighborhood, swinging at the park with my niece. i don't know how it will happen. i ask, i believe, i will receive.
if you can, see the movie. it is empowering.
Sunday, February 21, 2010
pain
Dr. Donald Barone, director of the MS Center of SJ:
“There are no words that take away the pain people experience as they see their physical functioning declining.” [MS Connection 2009 issue 4 p.6]
i couldn't have said it better.
“There are no words that take away the pain people experience as they see their physical functioning declining.” [MS Connection 2009 issue 4 p.6]
i couldn't have said it better.
Friday, February 5, 2010
improvement?
dare i write it…? could i actually have some improvement? i put it as a question out of fear that it’s not true. it is though. there is an exercise i do w/ my arms, my aide always does the left arm. a while back i could put my arm straight out in front of me and raise it toward my ear. a few months ago i couldn’t lift it, only hold it straight as my aide lifted. yesterday, i lifted it again! so yes, there is improvement. i am still having days when my right arm and hand are weaker than 6 months ago but not worse than 2 months ago. i think my decline has finally become a plateau! the 1st i believe since 2007! thank you God, Tysabri, my body.
Friday, December 18, 2009
quote
i read a children's book today and found something meaningful, especially relevant for my past few days.
The night is shelter for those who weep. –from Moonsong Lullaby by Jamake Highwater
despite my positive attitude, i have days when it's just too much. i vent to friends and family, i write, but that's not always enough. sometimes i just need a good cry. there's something comforting about crying in the quiet of night. the quote helped me to know that others feel like i do.
The night is shelter for those who weep. –from Moonsong Lullaby by Jamake Highwater
despite my positive attitude, i have days when it's just too much. i vent to friends and family, i write, but that's not always enough. sometimes i just need a good cry. there's something comforting about crying in the quiet of night. the quote helped me to know that others feel like i do.
Thursday, September 10, 2009
hope
my last entry was lengthy and overwhelming if you don't know me. today i have better news, though it is not concrete.
a week ago i started a new treatment - tysabri. it's the latest, greatest invention for modifying MS. of course, it's only been studied on relapsing patients, but some of us progressive patients are trying it anyway. in relapsing patients, tysabri has been shown to reduce relapses, reduce new brain lesions AND slow disease progression. this last one is what i wish for most. some people think it can also IMPROVE symptoms which would be fantastic.
the reason that i feel hope today is because 3 days after my 1st infusion (it's a monthly IV infusion) i spent 3 very busy days and i did not feel exhausted afterward. this is a huge improvement for me. i usually have to spend a full day recuperating if i've had a very active day. i thought i'd have to recuperate for days after my long weekend. instead, i got a good 9 hours of sleep, took it easy the next morning, and i felt no fatigue.
i should mention though, the 1st 2 days after the infusion i was extremely fatigued. yet, i was then able to spend 3 days traveling and visiting with family.
if this treatment can prevent fatigue, i'm hopeful that it can do other good things. we'll see.
again, don't take my word on good or bad treatments. research and talk to your doctor before you try anything new. especially tysabri, as it can be very risky.
a week ago i started a new treatment - tysabri. it's the latest, greatest invention for modifying MS. of course, it's only been studied on relapsing patients, but some of us progressive patients are trying it anyway. in relapsing patients, tysabri has been shown to reduce relapses, reduce new brain lesions AND slow disease progression. this last one is what i wish for most. some people think it can also IMPROVE symptoms which would be fantastic.
the reason that i feel hope today is because 3 days after my 1st infusion (it's a monthly IV infusion) i spent 3 very busy days and i did not feel exhausted afterward. this is a huge improvement for me. i usually have to spend a full day recuperating if i've had a very active day. i thought i'd have to recuperate for days after my long weekend. instead, i got a good 9 hours of sleep, took it easy the next morning, and i felt no fatigue.
i should mention though, the 1st 2 days after the infusion i was extremely fatigued. yet, i was then able to spend 3 days traveling and visiting with family.
if this treatment can prevent fatigue, i'm hopeful that it can do other good things. we'll see.
again, don't take my word on good or bad treatments. research and talk to your doctor before you try anything new. especially tysabri, as it can be very risky.
Friday, August 14, 2009
canes and walkers and wheelchairs, oh my!
i'll try to get back to the story i started telling a year ago.
in 1994, i worked through a major depression. i'm not ashamed to say that i continue counseling and anti-depressants to this day. fortunately, i never again felt as depressed as i did that year. still, ongoing physical struggle brings ongoing emotional struggles and so, ongoing treatment.
i'm about to discuss the progression of my disease. keep in mind, most people with MS have the relapsing-remitting type where symptoms come and go. i don't want to scare anyone with my story. my progressive type of MS comes, stays and gets worse.
during my 1st year of grad school i could get by with a cane [i had a pretty one that some friends designed with a vine winding around it].
after some months it was clear that a cane was not enough help. i fought the idea of using a walker. i was 24, not a senior citizen. finally i gave in, and what a relief it was! it was no longer a struggle to stay balanced. i could lean with both hands. i used a plain metal one most of the time that i would pick up and move with each step. i also got one with 4 wheels, a basket to carry things [try carrying things with both hands moving a walker], and a seat i could use if i was walking a distance. i actually used it to walk and take photographs at longwood gardens [several acres].
by my 3rd year of grad school, the walker was only good for short distances [around the house or into a convenience store]. when i did my teacher practicum, i used my first wheelchair.
i'm going to go off on a tangent. the 1st time i ever used a wheelchair, i was going to an art museum with friends [one of whom is now my husband : ) ]. it was a crowded space with everyone's butt in my face where i could barely see the artwork hung at a standing person's eye level. by the time we left, i could barely control my tears or explain why i was so sad. it was a dose of the reality of my new life with MS.
so, back to my practicum... i used the wheelchair most of the time, but i could get up and walk around the room with a cane [a yard or 2 tops]. that 1st wheelchair was a rental not my size and too heavy for me to get out of the car. by the end of that autumn, we ordered a wheelchair fit to my size and needs. i could fold it and put it in the back seat when i drove. somewhere along the line i switched to hand controls for driving.
the combination of walker at home and wheelchair in public worked for quite a while. i finished grad school and, after a year of interviewing, got a job as a special ed teacher. still, things were getting worse. in the spring of 1998, i was fortunate to have my family renovate our home so it would be wheelchair accessible [i'll save my rant on accessibility for another post]. when the renovation was complete i used my wheelchair full time.
after my art museum experience, i gradually adjusted to the situation. using a wheelchair made my days much easier and less tiring.
it doesn't end there. in 2001, i got my 1st power chair. propelling myself through the school hallways was too much for me. the power chair was great for work and trips to longwood gardens, but i otherwise used my manual chair. i'm sad to say that i'm losing strength and now use my power chair most of the time.
i don't want to think about what might be next. i don't worry much about the past or the future. i do a good job of simply enjoying each moment as it comes. i also know that whatever the future brings i'll be o.k.
in 1994, i worked through a major depression. i'm not ashamed to say that i continue counseling and anti-depressants to this day. fortunately, i never again felt as depressed as i did that year. still, ongoing physical struggle brings ongoing emotional struggles and so, ongoing treatment.
i'm about to discuss the progression of my disease. keep in mind, most people with MS have the relapsing-remitting type where symptoms come and go. i don't want to scare anyone with my story. my progressive type of MS comes, stays and gets worse.
during my 1st year of grad school i could get by with a cane [i had a pretty one that some friends designed with a vine winding around it].
after some months it was clear that a cane was not enough help. i fought the idea of using a walker. i was 24, not a senior citizen. finally i gave in, and what a relief it was! it was no longer a struggle to stay balanced. i could lean with both hands. i used a plain metal one most of the time that i would pick up and move with each step. i also got one with 4 wheels, a basket to carry things [try carrying things with both hands moving a walker], and a seat i could use if i was walking a distance. i actually used it to walk and take photographs at longwood gardens [several acres].
by my 3rd year of grad school, the walker was only good for short distances [around the house or into a convenience store]. when i did my teacher practicum, i used my first wheelchair.
i'm going to go off on a tangent. the 1st time i ever used a wheelchair, i was going to an art museum with friends [one of whom is now my husband : ) ]. it was a crowded space with everyone's butt in my face where i could barely see the artwork hung at a standing person's eye level. by the time we left, i could barely control my tears or explain why i was so sad. it was a dose of the reality of my new life with MS.
so, back to my practicum... i used the wheelchair most of the time, but i could get up and walk around the room with a cane [a yard or 2 tops]. that 1st wheelchair was a rental not my size and too heavy for me to get out of the car. by the end of that autumn, we ordered a wheelchair fit to my size and needs. i could fold it and put it in the back seat when i drove. somewhere along the line i switched to hand controls for driving.
the combination of walker at home and wheelchair in public worked for quite a while. i finished grad school and, after a year of interviewing, got a job as a special ed teacher. still, things were getting worse. in the spring of 1998, i was fortunate to have my family renovate our home so it would be wheelchair accessible [i'll save my rant on accessibility for another post]. when the renovation was complete i used my wheelchair full time.
after my art museum experience, i gradually adjusted to the situation. using a wheelchair made my days much easier and less tiring.
it doesn't end there. in 2001, i got my 1st power chair. propelling myself through the school hallways was too much for me. the power chair was great for work and trips to longwood gardens, but i otherwise used my manual chair. i'm sad to say that i'm losing strength and now use my power chair most of the time.
i don't want to think about what might be next. i don't worry much about the past or the future. i do a good job of simply enjoying each moment as it comes. i also know that whatever the future brings i'll be o.k.
Subscribe to:
Posts (Atom)
