Category Archives: Multiple Sclerosis

Fathers Day, Multiple Sclerosis, PML, two face tree pic, Tysabri, Tysabri rebound, yin yang, yin yang tree

Fathers Day’s Week Yin and Yang of Tysabri


We had a storm this past week, and the wind blew the rain side ways as it came down.  The effect on the tree in our back yard was striking as it split the face on the tree right down the middle.  It seemed to be the perfect standard for my thoughts on Tysabri, a drug I’ve take to slow the progression of my multiple sclerosis.  It fits my limited understanding of Yin and Yang.

Yang

I was asked in a recent survey about my high school what about my life makes me feel most successful? I went back to my goals coming out of high school, and the first goal was to make enough money for money to never be the reason I can’t follow a dream.  Then from the time A came to live with us, I have been telling my kids, I have nothing more valuable to give them than my time and attention.  The survey came to me on the right weekend, because it reminds me of the real answer for what about my life feels most like success. 

Success is realizing that while my time and attention may be the most valuable things I have to offer my kids, all that I give them is returned to me magnified and multiplied as if seen in some carnival mirrors in a mad house. Their love is the sunny side of the face. 

The time and energy I have been given to spend with them after feeling so rotten my first 9 months after being diagnosed with Multiple Sclerosis have been a blessing.  The drug has enabled the parts of my life of which I am most proud.

(For the Yin continue to the next page)

Yin:
On Tysabri in this article : http://www.medicalnewstoday.com/releases/261719.php

I hate seeing the bit on what happens when a patient stops Tysabri. I’ll grant it was only 7 patients, but the most common numbers thrown about are 1 in 3 has MS rebound. So for all 7 patients to have new lesions in 11 months …(forget that they all had 40 to 70 of them) would be 1 in 2,187. With the average disability score changing by 3 points with the now treatable brain infection (PML) being the rare potential downside of continuing Tysabri, I think the odds behind patients choices on whether to stay on Tysabri may be changing by the week. 

Of course after 78 infusions, I wasn’t thinking of changing now anyway.When I started Tysabri, J and I said give us 5 good years over 30 crappy ones.  As I am 6.5 years in, I find myself more than willing to make the same deal again. Still, it’s a sobering realization there may be more to consider than whether a new treatment is as effective or better than Tysabri.  Simply getting off Tysabri looks like it may bring on an even more aggressive MS.  That is a scary thought when I think about how aggressive my MS was before Tysabri,  long I have been on the drug and the lack of studies about the impact of being on it 10+ years. 

As a set of good foster parents lose their kid back to parents whom nobody but the judge thinks will do a good job raising, it hits home how little time we have with our kids.  Whether we give birth to them, adopt them or foster them, nothing is promised. Furthermore, the possibility of love separated (yin) is always the risk within the yang of love.  As great as the yang of love can be, nature seems to favor balance which I suspect is why the greatness of love seems balanced by the horror of love seemingly heedlessly lost.

Maybe that’s why my favorite coupon in the coupon card book from my daughter is the one for a hug.  Their sadness reminds me to cherish our nighttime rituals, even when I am tired.  How long will we enjoy them?

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family impact, fostering and adoption family impact, good life, inspiration, MS, Multiple Sclerosis

Seek and Ye Shall Find


If you are looking for ways my MS impacts me and us, I am sure you will find them.  It is not hard.  Much as I may wish them to at times, they refuse to hide.  When flustered, I can not recognize what’s in front of me, like the pacifier under the pillow where I looked 3 times (and where I found it 5 min after putting O to bed)…If you are looking for things to be wrong, you will find them as easily as when you note I am constantly rubbing my wrists as if I could magically rub away the discomfort.  I promise. However, I think this is true for all of us in all walks of life.  If we look for the ways reality is less than perfect, we will never stop finding that for which we search. 
If you are looking for the “old me,” I am here too.  If you look for me, I am still here loving as much as ever and trying everything in my power to find new ways to improve.  I am still up cleaning or working on tasks around the house at my slow pace until close to 11 two of most every three nights.  It is a slow distracted pace after nine, but in my defense, I have been up since five.  I am still going to spend free time trying to do activities for our family whether it is writing this so I can stay sane or searching for vacation rentals because we as a family are important to me.  I am still here.
When you tell me to recognize my MS is causing problems, it leaves me incredibly frustrated.  You seriously have not seen me say exactly this?  It feels like I soiled myself, and you want to rub my nose in it as public shaming.  When people who could be helping suggest my MS is a reason not to care for K, it feels like I am drowning looking for peace, and all you have to offer is a bucket of chaotic water to dump over my head.  Yes, there are times I need support, and maybe it is more because of MS.  Who takes on mammoth tasks like raising our kids does not?
If your looks towards me are filled with contempt or pity at us for attempting a task that seems Herculean at times, you will come to see in my face a mirror.  Likewise, if you look towards me with love and wishes to help, you will see it and gratitude reflected back at you magnified with all that I am capable.  If you are sad or mad because I am not the same person I was ten years ago or more, I cry for you and your expectations.  Neither of us is nor can be.  Nor should we try.  The idea by which I try to live is not to hold static that which we once were.  To do so is to deny all growth, and I am not yet done growing.
I have MS, and to this point, it puts quite a few temporary limitations on me.  However, there are only a few things I used to be capable of doing that I cannot do with calming balm of time, whether it is button my shirt, learn to run again or even learn to think differently. 
Sincerely,
An Attempt at Living with MS
 A note about A: For the past week she has been subject to teasing on the playground because she keeps trying the monkey bars and taking forever.  Kids push her out of the way, and even mock her as she tries, falls and tries again.  It might be easy to ask why she insists on continuing to try, and the answer goes back a few weeks to when she tried them and fell.  She fell on her back and had the wind knocked out of her.  Since then, she is determined to make it across.  Much like when she struggled with arithmetic and worked at our dry erase board for  weeks A’s math issue I suspect the monkey bars will fall to her determination like everything else has.  She may have a harder time picking up some new skills than others, but my money is on her when it comes to somebody maximizing their potential through hard work and force of will.  
She inspires me to try to live up to her.  If it seems backwards for a parent child relationship, so be it.
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