Category Archives: happy life

Family, family life, foster care, happy life, parenting, Uncategorized, when kids won't sleep

Another Year in the Rear View Mirror

This is the life we build. It is complicated, but what a ride!
This is the life we build. It is complicated, but what a ride!

I have definitely enjoyed parts of this Christmas even as others have proved difficult.  It has been a Christmas where my mom was able to take J, A, and O to the Nutcracker just like she used to take me every year.  Hearing how much my kids loved the performance is a reminder how much we share and how much we are raising them to be like us (heaven help them).  My family and I have benefited greatly from the generosity of others this Christmas,  and we have been able to celebrate the season as I wish we always could.  We went to the zoo lights at the National Zoo which we all enjoyed, but the Christmas lights show which we enjoyed the most was closer to home: https://www.facebook.com/LightsOnIceCrystal

Every year around New Years, I try to look back on the past year to better appreciate all I’ve done, seen and learned.  In January, we took a family trip to FDR resort in Jamaica which was the most enjoyable family trip I remember.  I hope we can go back again but with K this time.

It’s been a year where A and O learned to ride bikes and read for fun.  In fact, it’s been a year where we have all learned a lot.  For me, I learned how little “privacy” we have (http://thelifewelllived.net/2013/06/10/nana-your-business-my-perception-of-american-privacy/)

My highlights for the year include deciding we will try to adopt K and on a slightly lesser scope, attending a conference at the National Academy of Medicine where I learned about healthcare systems from all over the world. On a personal goals front, I went from being unable to do a single pull-up without help in September to being able to do 5 by my birthday and 7 by the end of the year.

Still, even with all of the great moments and accomplishments of the year, it’s not been a smooth ride.  I sleep less and hurt more.  I make more mistakes and often find myself starting the day saying, “OK, so what have you got in the tank for today?”  A lot of this is the result of strained family dynamics due to medication changes.  With the change to our 6th psychiatrist in 5 years for O and A comes a change in treatment philosophies.  The last doctor thought lack of sleep was the most important symptom to be treated, but the new doctor worries about the interaction of drugs taken for the past 6 months.  Changing everything at Christmas time when sleep is fleeting for excited children has just been painful.  We are all tired, and it feels like starting over with repressions in manners and self control at their lowest points in years.

Despite this, our kids have had some epic fun building roller coasters an Pac-Man adventures, reading and playing games.  I guess there is an advantage to less sleep.  Our imaginations can run wild.

 

Beware the ghosts!
Beware the ghosts!

 

 

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happy life, Humor, MS stories

MS Humor

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I think being sick requires a certain attitude if one is determined to be happy.  I was told in an MS group for Men, “Until you can laugh and poke fun at yourself for your symptoms, they own you.  They can control how you behave.  When you can laugh about them, it shows you’ve accepted them and are no longer willing to let them drive your life.”  This came from the man who told me to laugh off tracks in the underwear as bad gas and keep a spare pair in the car.  As he said, fart jokes never get old, and the best ones are the ones untold but known to and experienced by all. http://i.imgur.com/1qFs1.jpg
Towards that end, I was trying to think back to some of the humor I’ve found in my MS.  Much of the humor was unknown to me at the time.  I couldn’t see it yet. 
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My step mom says I have the family’s cursed CRS.  CRS in this case stands for “Can’t remember #$%^”
I use my memory gaffes as part of the comedy of MS routine stories I tell to make light of MS and make friends comfortable laughing at MS.  One of my most common stories is from my first Christmas with MS where I got together 3 presents to wrap, tape and paper.
1st present: put present down, cut paper, fold paper, tape – tada! one down two to go.
2nd present: put present down, cut paper, fold paper, ummmm where’s the tape?  I haven’t stood up.  It must be within arms reach.  Why the heck can’t I remember where I put the tape…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape.  So I go and grab another roll to finish.  Tada! Two down.
3rd present:  put present down, cut paper, fold paper, ummmm where’s the tape?  Seriously?  I can’t remember where the heck I put it.  Thankfully this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done. 

I saw the tape neatly stacked one on top of the other only the next morning, for the night I just had a block.  I could not remember where I put the  tape down.

Lest one think it only hits for mundane things like tape, I once spent what felt like 5 min trying to remember my wife’s name before a coworker supplied it for me when I said, “You know, the woman with whom I live.” 
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A few years ago, I learned to always get a tray when I went downstairs to the cafeteria.  In the course of 4 work days, I dropped 5 bowls of oatmeal.  Yes, that’s right. 5.

Something about holding the bowl with one hand made it shake and then get thrown or dropped.  After the first one, I would not let the cafeteria staff clean it up.  I just had them tell me where the mop was… On the fourth day I got over my stubborn streak and said “If I can’t hold this with 2 hands then no more oatmeal.  It might be better for my heart, but it’s crushing my spirit.”

If anyone has ever seen the Never-ending Story, there is a scene where the huge stone giant is looking at his hands saying “Such big strong hands…You would think I could just hold on!”  I wanted to print a picture of him with that caption to put on a tee shirt to wear down to the cafeteria for the laughing workers there. 

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Another funny from life with MS:
For most of the first two years I had MS, I experienced L’Hermites sign.  Honestly I kind of miss the L’hermites (sp?)sign.  It used to make me laugh, especially at the end when it was just a tingly sensation in the groin whenever I looked down.  It happened every time I looked down to pick up after my dogs.  I’d chuckle to myself and wish for that sensation at a more appropriate time than picking up poop.Wink
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On the embarrassing side, I often relate how steroids left me crying watching Independence Day with Will Smith.  Yes, emotional control can totally be taken away via chemical interactions.  I was literally laughing at myself for crying, and I couldn’t stop either one.
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I’ve taken to chuckling at the onlookers wondering why a guy who just fell is getting up to run some more despite cuts and scrapes. I loved the look on one lady’s face when I said, “It’s fine. It’s not like I felt it.”  Truth told I felt some thing.  It wasn’t pain.  It was humor at my MS and her reaction to its symptom.   
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