How Time Goes By So Quickly

I can't believe it's been since May that I updated the blog.  Yikes!  How time flies.  In that period of time we've had some great family moments, the most important of which was the celebration of William's First Communion.  He's growing into such an amazing young boy; full of life, wit, and love.  He has me smiling and laughing everyday!  

My recovery continues to be progressing in the right direction.  Not nearly quick enough for me as I'm sure you would expect, but I'm recognizing the need to celebrate the little things one day at a time.  Updates:

1) There are no updates with my blood disorder. My blood gets checked every two weeks and we're working to get stability of my INR's (working on stabilizing the thinness of the blood).  It's a slow process and one that I've been told takes time.  Good to know as it's been a bit of a roller coaster despite all of my attempts to watch the consistency of the foods I eat and the meds I take!

2) Neuropain: We've exhausted all oral meds in attempt to help lessen the sensory pain I'm experiencing on the left side of my body/right side of my face. After cymbalta was baclofen, and after baclofen was trileptal.  All are different types of meds but I've seen no differences in the sensory pain.  I do think the baclofen may have been helping with some muscle spasming I've been noticing and muscular pain so I'm considering going back on it.  Regarding the sensory pain, my next option is IV Lidocaine infusions.  Yes, sounded scary to me too.  The neuro dr believes it may have about a 60% success rate for improving my pain.  I have much to weigh about this treatment option.  It has a risk of seizures and I certainly have a fear of opening the door for my brain to take another hit. How does one prioritize?  What can you live with?  What chance do you want to take?  How long do you wait to figure that out?  My perspective; there is no rushing this decision.  All things I need to take the time to work through.  Overall, my sensory pain is being managed via compression garments, added lymphedema sleeve pressure, TENS, avoidance of painful light touch, and medication to aid in sleeping.  

3) Therapy:  Where would I be without therapy!!!  Wow.  What a tremendous group of therapists I have who push the envelop and seek to learn all they can in order to challenge me.  My balance has improved greatly.  So to has some of the compensatory techniques that have aided in more functional use of my left arm. We've spent a lot of time ramping up our work with estim and challenging my motor skills.  We're also spending a lot of time on gait and breaking down gait patterns.  This ataxia (difficulty motor planning) is such a beast of a challenge.  I have to consciously fight to break through a system that feels locked and difficult to control.  I've learned that the more I fight it, the quicker it becomes a losing battle.  Yet, just in the last two weeks, I've had some improvements with letting go of the lower limb during the swing phase of gait, relaxing if you will, and just trying to let it swing.  Not trying to control it or really own the movement.  And, it's had some success.  On the flip side, it feels like there is little control or ownership of the movement which can be a little scary.  But, it's progress.  

In addition to my physical recovery is this aspect of mental and emotional recovery.....The last 6 weeks, I've really needed to work (and will continue to work) on the value of rest, patience, focusing on one day at a time, and acceptance of the need to grieve.  Grieving in ways that I never thought would be necessary at the start of this journey.  But those stages of denial, frustration, anger, bargaining, acceptance, etc.....are like a roller coaster for me.  No doubt a constant flux of highs and lows that I was not prepared for and took me a bit by surprise. I always strive to be positive, controlled, strong, driven, inspirational, motivated, a dreamer, someone who pushes boundaries and limits, etc.  And so one can imagine, when I hit some of these stages of grief, it scared me....made me question who I was.  Did this stroke change who I am?  My nature?  My psyche?  It's taken a lot of work to become educated, to accept help, and to view this as a process, a journey.  And to work on acknowledging and accepting those feelings that aren't so pleasing.  

I am so very grateful and thankful for the wonderfully supportive people in my life and who have entered my life since this stroke in order to walk through this journey with me.  Hand in hand.  One day at a time.  

Many blessings to all of you.  Love,

Kelly