I'm learning that it is entirely possible to be tired - of being tired!
I don't know if it is life going non-stop for the last 7 or 8 weeks - or if it is the new medication (Gilenya) that I'm on - but my fatigue levels have been pretty bad the last few days.
Didn't know it was possible to do - but the other day I actually fell asleep at the dinner table! Not entirely as bad as it seems - dinner was over, kids were upstairs getting in the bath and Randy was in the living room watching one of his shows. I just didn't have the energy or desire to get up from the table and climb all the stairs to get to my room... so I put my head down & next thing I know - its the next morning. Somehow my husband got me up the flight of stairs & to our room.
There are medications available to help fight the fatigue (I have Provigil) - but I'm learning that if I take it every day - my body seems to build up an intolerance to it & it just doesn't work very well - if at all.
As I yawn here at my office desk - I realize that I've gotta get up & drive home now... I see another early bed time in my future.
09 May 2011
Belated Mothers Day
Happy Belated Mothers Day!
A day late - but for the mothers out there - I do hope you had a fantastic Mothers Day on Sunday.
I was reminded too though - that without the men in our lives, we wouldn't have been able to become a Mother - and without our Children, we would have never experienced the "joy of parenthood" - so in our family yesterday, we had a relaxing family day & I loved every minute of it! :)
I know not all my posts are centered around Multiple Sclerosis - however - we have to remember that MS is only a very small part of the person. Without my family/friends, there wouldn't be a whole lot of reason to put up such a fight against this stupid disease every day.
Have a wonderful day everyone.
A day late - but for the mothers out there - I do hope you had a fantastic Mothers Day on Sunday.
I was reminded too though - that without the men in our lives, we wouldn't have been able to become a Mother - and without our Children, we would have never experienced the "joy of parenthood" - so in our family yesterday, we had a relaxing family day & I loved every minute of it! :)
I know not all my posts are centered around Multiple Sclerosis - however - we have to remember that MS is only a very small part of the person. Without my family/friends, there wouldn't be a whole lot of reason to put up such a fight against this stupid disease every day.
Have a wonderful day everyone.
08 May 2011
Eureka!
Why am I writing this?
Most of the medications on the market for MS are a type of Interferon. For most people, this is just fine... however - the body can create what is called a "neutralizing antibody to interferon" - which in effect means that the medication is neutralized in the system & you might as well be injecting saline solution into your body.
I was diagnosed with MS almost 6 years ago. I immediately began on Rebif - then had to stop due to pregnancy. Beyond that I tried some clinical trials, but was kicked off of those within a year due to low heart rate & liver enzyme issues. Over the last 2 or 3 years (up until late last summer) I was on Avonex. Currently, I'm on the oral medication, Gilenya, that was released to market late last year.
I never knew anything about the body creating this 'neutralizing antibody to interferon' - and was NEVER tested for it until I was fighting to get on the new oral. I just found out this last week that I possess this antibody - so basically the treatments that I've been on have pretty much been worthless for me.
Could explain a heck of a lot.
So - now I'm on my little platform - informing everyone I can possibly imagine - posting nearly everywhere I can think of - begging MS patients to request this test from their neurologists before wasting more money & exerting more frustrations over medications that may not be working in their body.
PLEASE - Spread the Word to any MS patients you know of that are currently on an injectable MS treatment plan. Isn't it worth the few bucks - to confirm whether or not the medication they take can/will actually work in their system?
Unfortunately, this is NOT A STANDARD TEST for some reason. I would think that this should be something the neurologists test every MS patient for BEFORE starting them on any treatment plan!
I asked my neurologist what this meant for me - should the Gilenya (not an interferon by the way) not work. For me, the next step would be Tysabri... so we'll give the Gilenya a try & hopefully it will work! :)
Most of the medications on the market for MS are a type of Interferon. For most people, this is just fine... however - the body can create what is called a "neutralizing antibody to interferon" - which in effect means that the medication is neutralized in the system & you might as well be injecting saline solution into your body.
I was diagnosed with MS almost 6 years ago. I immediately began on Rebif - then had to stop due to pregnancy. Beyond that I tried some clinical trials, but was kicked off of those within a year due to low heart rate & liver enzyme issues. Over the last 2 or 3 years (up until late last summer) I was on Avonex. Currently, I'm on the oral medication, Gilenya, that was released to market late last year.
I never knew anything about the body creating this 'neutralizing antibody to interferon' - and was NEVER tested for it until I was fighting to get on the new oral. I just found out this last week that I possess this antibody - so basically the treatments that I've been on have pretty much been worthless for me.
Could explain a heck of a lot.
So - now I'm on my little platform - informing everyone I can possibly imagine - posting nearly everywhere I can think of - begging MS patients to request this test from their neurologists before wasting more money & exerting more frustrations over medications that may not be working in their body.
PLEASE - Spread the Word to any MS patients you know of that are currently on an injectable MS treatment plan. Isn't it worth the few bucks - to confirm whether or not the medication they take can/will actually work in their system?
Unfortunately, this is NOT A STANDARD TEST for some reason. I would think that this should be something the neurologists test every MS patient for BEFORE starting them on any treatment plan!
I asked my neurologist what this meant for me - should the Gilenya (not an interferon by the way) not work. For me, the next step would be Tysabri... so we'll give the Gilenya a try & hopefully it will work! :)
07 May 2011
Stuff
Yesterday was my yountest daughter's 5th birthday. I can't believe how quickly my little girls are growing up. So sad... but makes me very proud to see what incredible people they are becoming.
Today, we are having Heaven's birthday party at the park near our home. :) Should be a lot of fun... keeping it simple - but still a lot of prep-work.
Have a wonderful day everyone!
Have a wonderful day everyone!
06 May 2011
I Won't Let Go
The last few weeks, it seems that life and the world around me has been running at full-speed & non-stop. That - along with some MS issues that have decided to rear its ugly head - well, it's exhausting... but things have to get done, right?
I'll admit - I've been exhausted lately. I've been moving a bit slower at times too.
This morning, when climbing in the car with my husband, he turns on this song - and tells me that it is his 'song' for me. Take a listen:
I'll admit - I've been exhausted lately. I've been moving a bit slower at times too.
This morning, when climbing in the car with my husband, he turns on this song - and tells me that it is his 'song' for me. Take a listen:
This song is called "I Won't Let Go" and is by Rascal Flatts. Tears will now forever come to my eyes when I hear this song - as it will always serve as a reminder for me just how incredibly lucky I am to be married to my husband. There will always be times that we disagree - and that we don't see eye to eye - but more than that, we will always be together and completely in love with one another.
04 May 2011
Updates
The Walk MS Events are over!
My family spent the day with me last Saturday at the Folsom Walk MS Event - and then again on Sunday at the Sacramento Walk MS Events.
Both were huge successes.
Well - looks like my MS Fundraising this year brought in nearly $3,000! YEAH! :) Every bit helps - so THANK YOU to everyone.
Well - family duties call - so I'm off & running (in my Nike's)!
My family spent the day with me last Saturday at the Folsom Walk MS Event - and then again on Sunday at the Sacramento Walk MS Events.
Both were huge successes.
The Friday before the Walks, I decided it was time to buy a new pair of tennis shoes. It took trying on nearly 20 different pairs at multiple stores before I found the pair that fit comfortably with very little adjustment... ended up with a pair of Nike Air - that are grey and almost a fluorescent orange.
Not planned - but worked out great with the black & orange colors all around for the NMSS! My admission - I have *never* spent this much on one pair of shoes... I just gritted my teeth & looked away from the machine when it asked me to verify the amount. (They were $70.) But - these shoes kept me on my feet all day both days. :)
Well - looks like my MS Fundraising this year brought in nearly $3,000! YEAH! :) Every bit helps - so THANK YOU to everyone.
Well - family duties call - so I'm off & running (in my Nike's)!
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