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!!!

New Year 2011

Well, who would ever think at 49 one's accessories would include a cane, walker and a wheelchair?  Incredible how life can quickly change.  The first week of January brought me five days of IVig treatments as recommended by my visit to Cleveland.  Aggressive Ivig and physical therapy when I get stronger.  To this point, I have lost quite a bit of muscle tone so it is probably a matter of time before my legs totally quit on me.  I use my walker to get to the bathroom but I cannot get up by myself.  I am becoming more and more dependent upon others.  Ugh!!! 


O'Bleness oncology department rocks!  They took such good care of me.  My veins are kind of weak for some reason so sometimes they would have to stick me two and three times for the iv.  I did go home with the locked iv and that would help for another day.  Mostly I read and watched tv during the three to four hours it takes.  Tony would get me settled in and then pick me up.  I tolerated the treatments with no adverse side affects...good thing!


Paul Mullins, a friend and physical therapist, came to the house to see how he could be of help.  He had us switch the wheelchair arms around for better leverage, take the bathroom door off the hinges and strongly suggested we buy a firmer, higher seated recliner.  My old recliner is "soupy" and a rocker making it tough to get me up.  Paul also showed me a few exercises that would help me.  Awesome!


Let me say here that I have a new respect for anyone that is disabled.  Not only for daily needs but for the project it is to go anywhere.  I suspect one just gets used to it but for us it was a frustrating challenge.  We did get a handicap placard in December.  While it is truly helpful and necessary for us it is absolutely aggravating to see someone in a red, cute sports car park in a handicap spot...pop out of the car and walk around the mall.  When one is made aware of a necessity it is amazing what you see.  Handicap bathroom stalls...all the way at the end of the bathroom.  Lack of family restrooms.  So, when we were going somewhere I limited my liquid intake as it was a struggle just to go to the bathroom.


It also was about this time that our wonderful, gracious friends began their meals on wheels campaign for us.  All wanted to know what they could do to help us and with Tony running a business, a home and taking care of me, cooking was not really a priority.  So, every few days someone would bring a meal (or three!!!).  And, I mean a meal...pastas, veggies, roasts, soups...breads, salads...desserts!!!  Absolutely, incredible friends and support.  I had to lecture each about small portions.  We had Wed girls' night at my house where I could be comfortable yet social.  We will never be able to thank everyone for their generosity!


Tony and I decided since I was not able to work and was pretty much confined to my four walls that we would go to my parent's home in Florida.  As long as we could get a direct flight (which we could not), a walker and a wheelchair (rented) we could make it work.  My parent's condo is up a flight and a half of steps and we knew this would be a challenge to say the least.  So, after my appointment with Dr. Arce Jan. 12th we flew to Florida.  The biggest challenge at the airport was the lack of a family restroom in our terminal.  Tony, out of necessity, just rolled me in to the ladies restroom (we tried to be sure it was empty if we could).  Just got to do what you got to do...


More about our respite trip later!


   

End of the Year Adventures:

December 15th:  Spinal tap in Dr. Arce's office at 9 am.  The drive to Columbus was a nightmare with an accident around Canal Winchester.  Many of you know how that usually turns out early in the am.  Needless to say we were more than an hour late but fortunately the practitioner doing the procedure had an opening.  My greatest fear right now was the idea of the spinal headache as I had experienced in August.  I planned ahead and told work not to expect me, laundry was done etc...all I had to do was get home and lay in bed until I felt out of the woods (about 72 hours).


Her first question was "do you have trouble getting numb?"...not what I wanted to hear as I just came off a dentist appointment with numbing trouble (pretty common for me) (by the way, my wonderful dentist, Dr. Spero, gave me an awesome cane).  She got out the high-level numbing potion and Tony got me on the table.  I had to curl into a ball of sorts with Tony holding my legs so they would stay curled up.  She gave me a couple shots to numb me and they seemed to work.  So....keep in mind she is inserting this needle into my back and searching for my spinal sac totally by feel...no fluoroscope here!  It seems that I have a bony spine as she was having a tough time maneuvering around it...fairly unnerving.  She pulled the needle out.  Another shot to be sure I was numb (there is no associated pain but one can feel the pressure as the needle moves around...sorry!).  In she goes again from another angle and again she cannot get around my bony spine.   AAAAGGGGHHHH!!!!  This gal really was very nice and she does taps all the time.  Did I want her to try again or did I want to go to Riverside under the fluoroscope?  She stated she rarely has to go in a third time.  I asked her what she would do.  Riverside.  Luckily, they got me in that afternoon so off we went.  


Easy.  Once we checked in, did blood work etc. the procedure itself took about 15 minutes.  In the car, seat all the way back hoping and praying for no headache.  I did lay as flat as I could for a couple of days and as each hour passed I believed I was going to be good to go.  No headache!!  Yahoo!!  I hope I never have to do another tap again.


December 14th was my last day at my office.  I ended up not going back.  I was, for the most part, struggling to walk even with a cane.  Teri brought over her little walker/buggy and that seemed to help me get to the kitchen/bathroom.  Getting out of my chair and off the potty was becoming increasingly difficult because of muscle weakness/fatigue associated with CIDP.  I chose my "house travels" carefully and my Iphone tucked in to my bra served as my "I've fallen and can't get up" device.


The Turmans shined up a wheelchair they had and brought it to the house.  The Conways had a ramp for us to borrow.  This would at least be easier to get me in and out of the house.  This generous help was brought on by the fact that one evening after a Christmas party get-together with all my gals, my great friend, Joan, brought me home.  We have one pretty good step from our garage to our house and in the past I usually had Tony behind me, cane in hand, and he kind of boosted me in to the house.  Joan and I should have known better.  We did just this but my legs were jello and I fell...would have been nice if I would have fallen in to the house but instead I fell half in and half on the step.  Joan was horrified but all we could do was laugh.  I cannot describe the next ten minutes but suffice it to say below zero temps are a great motivator.  We tossed and rolled and laughed and finally got me in the hallway.  Then what?  Joan pulled me across the floor where we both sat on the floor against the couch until Tony got home.  Awesome bonding.  A reality slap.


Cleveland Clinic got me in to their neurology department on December 30th.  The goal was a second opinion and to explore any other treatment options.  We went the night before, stayed in a handicap hotel room and were ready to go for my 8:30 am appointment.  Questions, questions and a very thorough exam (my weight had dropped by about 15 pounds...whew!) by two neurologists produced a concurring diagnosis of CIDP.  These neurologists suggested an aggressive IVig regimen;  five treatments in a row right after the holidays followed by two consecutive treatments each month through April.  They too were against prednisone at this point and believed I stood a good chance of improvement with IVig, physical therapy and rest.  We felt oddly good about our visit, the concurring opinion and treatment plan.  At least we had a path to follow now.


Christmas was quiet but calm and peaceful.  New Year's Eve was spent with some of our very great friends and a few toasts to a better 2011.


On a crazy side note:


Cleveland Clinic visit with blood tests:   approx $3800
Per Ivig treatment:  approx $6000-$8000 per (fluctuates depending upon cost of product)
Riverside for five days was about $22,000 (seems like a bargain)
Plus all the other miscellaneous testing/prodding


My family monthly health insurance premium:  $875 (relatively low by insurance premiums)
The math is an eye-opener.  We are thankful.

Reflections

Before I go much further this may be a good point to share part of how I have gotten through this crazy, unexpected journey.


I am not a fan of organized religion for many reasons.  I am spiritual and I have my own personal belief system that works for me.  A few years ago I heard of "The New Earth" by Eckhart Tolle...it sounded interesting and I was, at the time, searching for some understanding of life.  I read, highlighted and absorbed Tolle's writing.  I came to understand and connect with him and started to "practice" being Present in my life.  Little did I know I was practicing for accepting my life as it is Now.  And so:


1.  We label moments as either "good" or "bad".  Yet, the only moment we really ever truly have is now.  Life itself is only now;  the other "good" or "bad" moments only exist when we think about them.  Honor the past.  Plan for the future.  Live  now.
2.  Do I want the present moment to be my friend or my enemy?  I could choose to do battle with the moment...what is now...or I could accept it, lean in to it and live that moment.  This takes practice as it is not natural to live now.
3. Life will give you whatever experience is most helpful for the evolution of your consciousness.  I know this journey is what I needed to experience because it is happening at this moment.
4.  If I want to be at peace I have to make peace with what is.
5.  Wherever I am I am totally there.  If it makes me unhappy I have three options...remove myself from the situation, change it or accept it totally.  By choosing and accepting the consequences I have taken responsibility for my life.


Each day I read a passage or two from a couple of New Earth supplements.  I also read Mark Nepo's The Book of Awakening...a new passage each day...his stories are so, so awesome...check him out!  Practicing to live in the Now is tough work but it has really helped me get through the rough patches.    


Friends and family.  We cannot ever say enough or ever do enough for those that have so graciously gave of themselves.  From prayers to meals to deliciously perfect brownies to medical equipment to therapy assistance to a shoulder to cry on...we could never have gotten through this journey without the love and outpouring of support...more on this at a later time. 


Tony.  Cream rises to the top.  Yes, we do what we have to do.  My husband has been here for me each and every day.  We have had our share of frustrations but also some great laughs.  Our marriage has been strengthened through adversity and we have learned much about ourselves and each other.  Life is not neat and tidy (thanks for those few very true words, Jeanne!)....