Tuesday, June 14, 2011

More May Showers...Bring...

I believe it rained close to every day in May!!!  I love to work outside, get in the dirt and plant my pots..so, the frustration was growing because I could not be outside.  We hired a young man to clean the beds, edge, mulch, power wash and more...he did a great job and my pots awaited plantings.


The first week of May brought two more IVig treatments.  I did just fine...again!  The treatments, we believe, are helping to stabilize me...yahoo!!!  And, this time, we got the iv in one stick...ahhh...they lock it so I can go home with it for the next day's treatment.  


May 6th was the day I went to OU's physical therapy class so the group could present my case to the class.  There were about 30 students and a few teachers.  My group had already discussed the medical details with the class before I arrived so we moved right in to some pt demos.  We did some transfers from the chair to the "bench" and they taught me how to shift my weight to make the transfers easier.  The students were concerned about my level of fatigue and were quite conscientious of how much we were doing.  Then they strapped me into this hoist...I felt like I was going sky diving...the hoist is designed to safely lift one so that standing is possible.  There is no humility in my condition!  They had me move my feet (as much as I could) and then had me "guess" where my feet were in relation to my body.  I had no idea as I cannot feel them.  But, I managed to stand for about six minutes in this contraption.




These kids paid attention when they were at my house as they had me scooping dirt and planting seeds (testing my hand strength/dexterity).  I got to take these plantings home, and yes, they are growing!  I also tried to pedal on bike pedals that are on the ground.  We were all impressed that I could do it (very short time).  I hope the class learned something from me...most of them will rarely if ever deal with a CIDP patient.  At the end of class they presented me with a beautiful gerber daisy, a "grabber" and lots of thank-yous.  The students that worked with me came back to the house the next week and followed up on some exercises.  Awesome group and a rewarding experience for me.  I ordered a peddler for home and am up to four minutes a day...


Mother's Day weekend.  My sweet Tony took me to a huge greenhouse about 45 minutes south...in the Durango which he had to lift me up in...we did it!  He wheeled me around, allowed me to pick and choose what I wanted.  We loaded up, unloaded at home and continued on to a few other places in Athens...he was a gem!  On Sunday, he helped me plant some pots.  I could do most everything as long as it was on the table...he did the big plants...never did I think I'd see it...LOL!!!  I even gave him a lesson on deadheading...guess what he does every few days now...my arms/hands were quite tired and sore the next day but well worth it!


May showers were actually good to me.  I found I was beginning to get stronger.  I started to do a few small things I could not do before...unscrew the toothpaste, put my bra/shirt on by myself, plant a bit...small things we all take for granted...progress for me.  My parents were coming to our house for Memorial Day weekend (driving north from Florida for the summer).  I was so excited to see them and I know they were anxious to visit with us.  My mom helped me get some summer clothes out, cleaned some closets/drawers for me and was an all-around help.  Tony and dad golfed and Memorial Day allowed all of us, including Anthony, to play in a scramble.  I rode and coached although my team was not very coachable!  We had a great time.  Mom and dad are welcome any time...except...they have to turn down the tvs...(both are going deaf...ugh!!!)


I had two more IVig treatments right after the holiday.  This was brought me three iv sticks with some attractive bruising...aaaggghhh!  None the less, no adverse reactions.  


June and sunshine!!!  I am on the upswing...it is still going to be some time as I am still unable to walk, but progress is happening each week.  Sometimes I pay for it in fatigue but I have to have hope and to keep trying.  I stood on my walker for about a minute last week and that was a huge boost for us.  Paul came by the house and he recognized my improvements although I did fall while trying to stand on the walker for him.  Slow but sure!!!  This week I seem to be tired so I have not tried my walker again.


The summer is here, students are gone and some pressure will be lifted off Tony.  Anthony is in Columbus doing a paid internship (awesome!!!) so we hope to take a few road trips for dinner and such.  I'm still practicing being present and accepting what my journey brings me and what I am learning...not always easy but my life is truly filled with joys.  I have a long way to go yet...time and patience.


More later.  Love, hugs and peace.















3 comments:

  1. Cheryl
    I know it's a long and frustrating journey. I love that you are as exited about the small stuff as I was (am). You have to hold on to those small accomplishments to keep moving forward. You have a wonderful family and I know that makes all the difference in the world.

    I liked dealing with the students. I would flirt with the young men. It probably made them uncomfortable but it made me happy and laugh.

    In the words of Dori from Finding Nemo "just keep swimming".

    Sarah

    ps...The IV in the first stick is always great.

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  2. Thanks for writing Cheryl. YOU are inspiring. You may not know this but some days you keep me going. Thanks for sharing XOXO Jocelyn

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  3. Hi Cheryl,
    Thank you so much for sharing your life and story. My dad was just diagnosed this morning with CIDP after 2 months of Guillain Barre. I am taking my laptop up to the hospital for him to read your Blog while he is there. Thank you again,
    ----Lydia Donnelly (Bob's wife)

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