Monday, December 23, 2013

Tick, Tock Time Runs a Marathon

Ever notice when you walk away from something for a bit and the time flies by without a second glance? It runs by like some super fast marathon.

What did I actually accomplish this month. I mean tomorrow is Christmas Eve already and I haven't posted since the 4th. Now looking back absolutely nothing! Well almost nothing. No it doesn't seem like Christmas either. The 70+ temperatures do nothing to enhance it. Even with the lights and decorations up, the Grim Reaper is overshadowing all the merriment sucking it dry.

Have I done anything towards my stroke recovery. Nope just trying to do too many things at once. It's become a dull routine now. I haven't recovered a lick. In fact, I've regressed back into diapers and barely able to walk...more on that in a bit.  It's more to do with having so much to do than actual regression. I've had my own version of locked in syndrome with my husband so ill.  I have no desire or money to go or do anything except play games on the computer. Yes that does help build my mind up some but not the rest of me.

At this point I'm not achieving much in a recovery sense, but just am. The things I'm trying, I'm failing miserably spinning all this nice wool from Buddy. I just can't hold the tension right one handed on the wheel. I tried using the hand held spindle and wound up with a tangled mess. I did achieve some measure of success with knitting one handed. It is s-o-o-o slow tucking one needle up under my bum arm but at least I've got that and I am knitting just what...I dunno. I'm still practicing stitches. Casting on is a real headache.

The spasticity is back in the arm again so it is frozen in a 90 degree angle but it makes a good prop for carrying things since it doesn't relax now, but I can straighten out my fingers but not my thumb. The wrist is a lost cause.  It won't budge to even allow any kind of bracing. You ever feel like the more you try to get ahead the farther you fall behind? Yep, you got it. I'm there. Botox again in January. But at this point I'm wondering whether I can justify the expense. It's $6,500 (before insurance) per cycle 3 to 4 times a year. I'm just not seeing the improvement I expected after 18 months almost of injections, but there is the pain relief factor too.

Bad news on the ankle inversion/drop foot front. After an additional three months, a new orthodic, debreidments and doctor appointments, the pressure sore has come back in full force rupturing from the inside out this weekend.Talk about a painful event. All that new skin and callous just blew outwards leaving the biggest cavity to date. Just what I needed to usher in the holiday. I snapped a rivet holding one of my straps this weekend so I'm hobbling around for two reasons. Come my husband's death, I'll have to have a full ankle fusion and the tendons cut. There is now no other option.

Meanwhile the reasons to be upright on my feet grow exponentially as my husband's health slowly declines. I'm administering meds every four hours, changing diapers about that often, and bedding twice a day. The good news is that there is now a hospital bed in my living room. It definitely makes things easier just in smaller size alone and having the ability of raising, rolling it around, etc. It's a good thing I was formerly a nurse. The only fifference is that hospice can spell me. It makes for long weekends though when mostly it is just the two of us. I refuse to ruin everyone else's weekend. My hubby is no longer allowed to be up on his feet unsupported. He has taken some really bad falls in the past couple weeks and I'm surprised he didn't break something.

The good news is every morning he opens his eyes and smiles at me. Then he breaks into his version of the old Rare Earth song, "I Just Want to Celebrate." He bobs his head, bounces in the bed, and sings about every third word.

I know this post is sort of down in the dumps, but I felt I needed to answer all the emails concerning us this way.

I also wanted to wish each of you a Merry Christmas. Here's to a better 2014 because 2013 was a roller coaster. Thanks for all your support.


  1. I am amazed and inspired by your determination and spirit. Wishing you and your family a Merry Christmas!

  2. It's amazing to hear the determination in your voice (writing). No "poor me" or "poor Terry," just resolve to plow through it all. BTW, I think the speed at which calendar time passes is overwhelming as we poke through our exercises and therapy each day. I've been working on my recovery four 4 years, and my arm sounds like yours, except for opening your fingers (which would be an enormous reward for me).

  3. Treasure those morning songs right now, JL. Praying both of you have the strength.

  4. {{{{{hugs}}}}} I love your determination and your hubby's song. Know you are wrapped in love and prayers, Jo.

  5. You just are... happy holidays!
    Be the best you know you have, we are here for a tug on our ears.
    many good thoughts you and your family.

  6. Lara- what else would I be. Same to you and yours.
    Barb- That's really not my style to be poor pitiful anything. My fingers don't straighten on their own except when cramping then it's gnarled claw like. I have to do it manually.
    Alex- I will treasure those moments forever! We've got strength. The Lord provides.
    Zan Marie- Thanks and big bear hugs back to you. Of course I know this with friends like you.
    Jeremy- You with those big Dumbo ears hears all. The good thoughts are all I'm holding on to.

  7. Jo, so sorry to hear all you are going through, but what an amazing woman you are. You're an inspiration!
    Bless you and your hubby both!

    Merry Christmas and a Happy, Hopeful New Year!

  8. Hi Jo - it's wonderful to read how resilient you both are .. what a great song to be singing .. even in your husband's odd way - as you say the light in his eyes shows through ..

    I congratulate you on your strength and determination .. your post is not negative - it is uplifting in many ways ... my heart goes out to you all .. with hugs and many thoughts for a peaceful and blessed time - it will not be easy, but you are there coping as only you do - a tower of strength .. all the best - Hilary


I love to hear from you! Agree, Disagree, matter. Even if it's to say you were here.