A Little Respite and Much Reality...

We arrived at my parent's, after a five-hour delay, around midnight.  Quite a long day for me.  I'm supposed to not allow my legs to dangle more than an hour so this day was a tiring challenge for me.  Our next challenge was getting me up a flight of stairs in their condo.  Mom watched from above (keep in mind that she had not seen me since Thanksgiving when I was somewhat walking with my cane)...Tony was on one side of me with an arm around my waist, me, with an arm around his neck and a hand on the banister and my dad behind me in case I fell.  Whew...one step at a time while pulling up on the banister.  We made it up to the top where I grabbed the handles of my walker and got to a chair.  Unbeknownst to me...my mom went in her room and shed a few tears.  The biggest issue with CIDP is that because the nerves are not firing to my muscles and they then weaken/fatigue, it takes me 10 times the energy to do something...recovery time is then lengthened too.  So, we got settled in for the week...my mom helped to unpack us.

Beautiful rainbow as seen from mom and dad's lanai.

We really did not have much planned for our stay.  Golf for Tony, pedi for me, pool time and truly rest in the warm air.  I knew I could scoot on my butt down the steps but to come back up was hell...I needed assistance getting to the bathroom, off the potty and back to my chair (usually I was on the lanai or the den)...so, we planned accordingly.  My mom could somewhat lift me and help but that was a bit much so Tony's excursions were a bit limited.  Steps were once a day only.  We figured out how to get me in the shower but it was a project (fortunately their condo and our home have large step-in showers).


Unfortunately, while the warmth certainly did my soul well, my body was failing. Even now with my walker I fell a few times (my knees just buckled and once that happened there was no way to adjust).  Tony and I took this time to have some heart to heart chats.  We knew it would not be long before I would be in a wheelchair.  We made the disappointing decision to withdraw our offer on the condo and take our home off the market.  The condo has many steps versus our raised ranch that would suit my needs at this point in our lives. It was the right decision though not what we wanted.  Reality slap once again.


We got to visit with some great friends while there...and, again, people that had not seen me for some time (I had lost about 15 pounds so I think they were a bit surprised)...Teri Kerr, the Snyders and the Barrs.  Loved catching up with them and soaking up their love!  My parents were great, healthy and thrilled to see us.  Tony and I would have loved to stay longer but we needed to get back home for my treatments, start pt and for the bar.  So, back to Ohio snow and gray.


When we got home we ordered a new recliner for me, took our bathroom door off the hinges, hooked up a hand-held shower/bars and picked up a toilet seat riser (all Paul Mullins' suggestions).  The intentions being to make it easier for me but mostly for Tony to lift me.  January 29th.  DeeDee Irwin came to the house and gave me a gentle, soothing massage.  This was the last day my exhausted and weak legs would allow me to walk.  I fell twice this day and it was horrible for Tony to get me back up.  This was it and we knew the wheelchair was going to become our friend. 


This was about the time I also realized how dependent I was now on Tony.  We settled into a routine each day.  He would get me out of bed to my wheelchair (by the way, we got a smaller transport chair when we realized the situation), to the bathroom and then to my recliner.  That is four transfers for him in five minutes...agggghhh.  He would bring me coffee, bagel etc.  Showers are a project and tiring so it seemed every other day with a sponge bath otherwise.  I could at least wash and brush my teeth (with some difficulty).  Once my personal hygiene was sufficient Tony would dress me.  We moved all of my make-up and hair products to my "sitting room".  While I could still put on my make-up and fix my hair, it was a slow, tedious and frustrating project.  But, I did it each day so as to feel good.  Now, most of you know me quite well...how do you think I liked all of this?  Again, I thank Eckhart Tolle and Mark Nepo for getting me mentally through each day.  Say "yes" to the present moment.  Surrender to what is.  Say "yes" to life - and see how life suddenly starts working for you rather than against you.


Feb. 3rd and 4th were my IVig treatments and again everything went well.  I tolerated the treatments and the staff at O'Bleness once again were awesome!  I started pt Feb. 8th at a different place and I really liked the therapist.  We decided twice a week for a few weeks and see how it went.  It is important that I continue to rest/heal and not over do as to just wash out.  Sam, my therapist, worked me pretty hard but I seemed to do okay.  He showed me exercises/stretches to do at home.  Tony and I did continue at home and Sam and I decided to go to once a week because there was only so much he could do with me.  Hurts so good.


Well, fingers are tired...more later...hugs to you!!!