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!)....

Thanksgiving and More...

Our family decided that we would celebrate Thanksgiving at our house this year as my parents planned to stay in Florida through the rest of the holiday season.  I think my trip to Florida was my last true independent move.  My legs/arms/muscles were weakening and the energy I had to exert to do anything normal was becoming exhausting for me.  Tony got us two turkeys and all the fixings as we said we would do that but my mom/dad/sister would have to cook.  My parents had not yet seen me since July (early symptoms) so they were somewhat nervous.  Well, my dad was a great distraction because on their way up from Florida he tripped at a gas pump and broke his nose (thanks but sorry. dad)!  At this point, I was still able to walk with cane, furniture and walls...but not well and not long.  It was wonderful to have my mom/dad and sister and her family.  Know me at all?  Know I'm a bit of a control freak.  So...I "bossed" around everyone...brine the turkey, peel the potatoes, roll the pie crust...yikes!  The best was my mother complaining that my father was slow chopping the onions and they were too small...and...digging in all my "things"!  I had to wobble back to my new tv room (thank you, Anthony for allowing me to dismantle your bedroom!) as I could not stand it one more second...just call me when it is ready!  Thanksgiving was great but I knew that I was getting worse and I mark this as a turning point.

December 8th.  WOW!!!  I truly have the very best friends in the world.  Cindy, Joan, Janis and Liz (Joni was sick) cooked a wonderful dinner for us AND decorated our tree, table and mantle.  We laughed, ate and I was so, so touched.  I am not sure what we would do without our family and friends!!!


Tony and I pretty much had settled on my diagnosis being changed to CIDP.  I met all of the criteria and our discussion at our last visit to Dr. Arce leaned in that direction.  Yes, we asked many questions...we made a list each visit of our questions and those of all who had their own.  Once diagnosed, treatment for GBS/CIDP is relatively black and white.  Because the demyelination is so varied person by person there is no standard timing/scheduling of IVig nor of recovery. Difficult for the patient to accept and the neurologist to treat.  Our visit to Dr. Arce on December 9th was tough but expected.  He, without tests, was fairly sure of the CIDP diagnosis.  He scheduled me for another spinal tap (aaaaggghh) and a second opinion at Cleveland Clinic.  The next, and somewhat final treatment, would be steroids.  Dr. Arce wanted to try to avoid this as it would be long-term steroid use with many risks.  Spinal tap scheduled for Dec. 15th and Cleveland Dec 30th.  Another story for another day...  

Reality Brings Some Changes...

Let me just back pedal a moment.  In early September when my symptoms were somewhat mild I did some shopping.  I knew I would need some low heel/flat boots as my numbness and lack of balance were not a good combo for heels.  Those of you that know me are howling right now because you know my love of boots...so any excuse to HAVE to buy a pair, or two (or four!!!)...and so I bought some awesome boots and a few pairs of very cool jeans.  


Well, I got to wear each pair maybe once and the jeans still have the tags on today.  Reality by mid-October was yoga pants/sweats and tennis shoes.  I could not handle buttons nor could I get my own shoes on...so, Tony had to get my boots on when I did want to wear them.  How do you think that went?  LOL!!!  I finally relented and even wore yoga/leggings and tennis shoes to the office.


Since I had given up driving each day was centered around Tony taking me to work, helping me up the steps and picking me up around noon;  then home to rest.  The gals at the office were awesome.  They would get my coffee and Lucky Charms (they couldn't stand to watch me with a walking stick trying to get to my office and hot coffee).  While going to work was an emotionally good thing it was physically draining much of the time.


November 4th.  EMG at Dr. Arce's in Columbus.  Simply stated an EMG shoots currents through nerves and the machine/doctor measures the time it takes to travel from a to b.  It is a bit uncomfortable but not really painful.  Dr. Arce was patient and explained what he was seeing and thinking along the way.  Yes, I was worse in that I had places all along my leg that the current did not even get to point b...meaning the myelin had stripped off in sections (think of the rubber covering on a copper wire and stripping off that rubber coating).  


Again, we discussed the possibility of CIDP and while Dr. Arce remained positive in early diagnosis/treatment, my symptoms were obviously getting worse.  I was numb to my calves and past my wrists now.  Walking was a strain even with my stick.  We scheduled an IVig treatment for Nov. 9th.  Again, I did my treatment at our local hospital but now I went to the oncology department.  Wow!  The gals in this department are incredible.  Each of them is caring without being condescending...professional, yet fun.  I truly cannot say enough about what they do every day.  My treatment was about four hours and I just read and watched some tv.  Fairly easy process this time.

A little tap of my stick...LOL

Before I realized I would be declining and a burden to those around me (I know...my family and friends would whack me for that thought) I had scheduled a girls' trip to Ft. Lauderdale.  Teri, Lori, Dawn and Penny.  They insisted I go and I knew Lori would help me as she was used to it every day at the office.  November 11th was my first time in a wheelchair but I had to do so as walking through an airport would have been impossible.  We had a few laughs and managed to make the best of my situation.  The trip was much needed for me and it gave Tony a break.  The gals were so patient, Lori helped me when I needed it, we drove instead of walked and they even got me in the pool a bit.  Great time with great friends.

Fall...A Different Meaning

Chilly.  Leaves.  Color.  Homecoming.  Football.  Sweatshirts.  My absolute favorite time of the year.  Fortunately, I made an effort to enjoy all that fall is to me...unfortunately, fall became a verb to me too.


In late Sept I tried a week of full-time work but by the end of the week my body was exhausted and telling me to listen up!  So, back to part-time.  My schedule was 8:00 to about noon and my afternoons were spent sitting outside for a bit and then sleeping for a bit.  My symptoms were increasing now.  The numbness/tingliness had crept up to mid-calf and to about my wrists.  It feels like when your hand/foot falls asleep...although that you can shake out, my extremities felt that way 24/7.  I could still walk without assistance but developed a Frankenstein-like gait.  Because of the numbness/sensory and reflex loss I could not tell where my feet were so I was slow and off balance.  I know I scared a few people but I am stubborn and insisted on "being fine".  The stairs at work were a challenge but I took them slow and deliberate.  As long as I could use the walls or furniture as guides...I was fine!  I could not walk far and getting through Kroger's felt like running a marathon. Yes, I was still driving.


Teri and Lori were insisting that I go to a cane and when Teri brought me "walking sticks" (like ski poles) I relented and started to use one.  I had to admit it helped me balance a bit.  About mid-October is when "fall" became a verb.  Because of balance issues and extreme muscle fatigue I took a couple of tumbles...nothing major but I knew my body was giving out.  Therapy was not really helpful at this point but I continued.  I could still stand in the shower but not for very long.  Yes, I was still driving.


October at OU means Homecoming.  I think this is about the time the hard facts really hit me.  Tony dropped me and my "walking stick" at Court Street Coffee.  As I sat on the porch it seemed as though I was watching life go by.  None of us realizes how fortunate we are and what simple things we take for granted.  It all hit me that sunny, chilly fall morning.  My pals found me and helped me to the spot where we love to watch the parade.  After the festivities Tony came back around to pick me up.  While I appreciated the beautiful day I felt a loss of sorts.


At this same time, Tony and I made the huge decision to put an offer on a condo at our Country Club and begin to downsize and simplify our life.  Needless to say our son was not thrilled.  The offer was contingent upon us selling our current home.  And so that process began with high hopes.


October 24th.  Interesting day.  I went to Penny Tope's gorgeous cabin to have my cards read.  I have never done so but I do believe there is certain energy that can be reigned in by us.  I cannot now remember all that transpired but I do recall two cards that turned up during my session.  They were both "spilled cup" cards.  These cards indicate a sense of loss yet the cloaked figure is not looking behind at the two remaining cups that are still standing.  Hope.  Optimism.  Interesting.  http://www.keen.com/documents/works/articles/tarot/five-of-cups-tarot-card.asp


This day was also the day I gave up driving, thus my independence.  I had a very difficult time getting to my car and getting out of the cabin's driveway.  I knew it was time.  While I was upset I knew it was the right decision for safety reasons.  Alas...Tony's Taxi was born!


I had an appointment with Dr. Arce on the 27th.  It was quite obvious that my condition had deteriorated and we started to talk about more IVig treatments and the possibility of CIDP (chronic inflammatory demyelinating polyneuropathy) which is basically chronic GBS.  We scheduled another EMG for early November to be conducted by Dr. Arce.

In the Beginning...Home

I have received great feedback from my blog.  I am thrilled that you are  appreciative but now the pressure is on...whew!!!  Really, thank you for reading, for your thoughts and for caring.

Saturday Aug. 21st.  We got home late in the day and my guys put me right in bed.  I don't remember much but I am sure I slept better in my own bed.

Sunday Aug 22nd.  Still have the spinal headache but trudged to O'Bleness for my fourth treatment.  Since the oncology/infusion department is not open on the weekends I had to go to the third floor regular section.  The nurses were very nice but really did not know much about administering IVig.  Three sticks to get my iv in but the plan was to allow me to leave it in for the next day.  The pharmacist had to come up and assist with the math problem based on my weight.  The nurse did not initially "turn on" my drip and that went unnoticed for about two hours.  Not a great start but I had some good Oxy so not sure I cared.  Monday's treatment went smoother and I was relieved to be done.  IVig stays in one's system for four to six weeks and basically protects the 

My headaches finally went away for good that Wednesday morning.  I could sit up, eat and feel human again.  At this point I took some time off of work and activated my short-term disability policy.  My intention was to go back to work after Labor Day.  My office took the reins and worked diligently to keep things running smooth.  Thank the Lord for my very good friend and co-worker Lori as she took the lead.  And, so I spent the next couple of weeks trying to allow my body to de-stress, heal and I did a lot of research.  

I knew that I was very lucky in that my symptoms were mild in comparison to many GBS patients.  I knew that we caught it and treated it early.  The hope was that I would begin to get feeling back in my feet and hands within six months or so but it could be a year.  There also was discussion that the symptoms (numb, tingly, sensory loss, muscle fatigue and loss of reflexes) could worsen before getting better.  This syndrome is rare and it affects every person differently thus making "standard treatment" a tough call.  So, as time ticked by I continued to be positive, count my blessings and generally remain strong.  The symptoms had started to creep up to a bit above my ankles and past my wrists.  Dr. Arce was not real concerned as we still knew early treatment was our best hope.  Because there is no cure for GBS there is no "daily" treatment.  Time.  Time.  Time.  Oh, and patience.

I was having trouble walking and so I was pretty slow and unsteady. I decided to go back to work as planned but part-time.  My doctor still wanted me to have plenty of rest and no stress.  Driving was do-able and going up steps was slow but okay.  Lori was a huge help to me, keeping a watchful eye and asking lots of medical questions.  The month of September did not bring about a whole lot of change one way or the other.  I did begin some physical therapy to help with balance and gait.  Some days were good and others not so...my muscles easily fatigued and left me quite weak.

We continued to hope that the symptoms would subside soon.  Our family and friends were so, so supportive and, of course, concerned.  There were offers of food, canes etc but at this point I was still feeling decent enough to do a few things around the house and remain independent.

 

In the Beginning...Day Four and more

Aug 19th.  I think I've screwed up my count of days.  Sorry.  This will be a long entry as I would like to get through my stay at Riverside.


Rise and shine to another day of horrible headaches.  Second round of IVig and thank the Lord that I had no adverse reactions to the first treatment.  The plan was for me to stay at Riverside for all five treatments which would mean a release on Monday.  Besides the debilitating headaches I really saw no reason to stay if I could finish the treatments in Athens.  The doctors wanted to get me through this second round and be sure I was tolerating it.  


Dr. Arce came to see me late Thursday afternoon and told me he would not release me with the severe headache.  Did I want to do a blood patch?  I told him that I would consider it...tomorrow.  In the meantime, a case manager was working with O'Bleness to see if I could finish my treatments there Sunday/Monday (outpatient).


That evening I felt well enough for Tony to help me get a shower...a little slice of heaven.  Short lived as it was though.  At least I felt a bit better as I downed my pain meds for the night.  


Aug. 20th.  My headaches were just as bad as day one so I relented on the blood patch.  They decided to do my IVig first and scheduled my patch for late in the day.  The blood patch was done the same way as the spinal tap instead using a vial of my own blood and placing it into the leaking hole and hoping it coagulates and plugs it up.  For some reason the department they did this in was  not "the basement".  It was high-tech and looked brand new to me.  Once again the staff was awesome and even fun!  The procedure took about 15 minutes and then I was to lay flat for five hours.  Really?  You are talking to a woman that has lower back issues, is tired of lying flat and is generally going insane.  But, we will do so!


By the second hour (it was about 8 pm by now) I was in so much back pain that I was in tears.  I begged my nurse to just roll me on my side for some relief.  That worked for a bit.  I ate some ice cream while flat (getting good at this) and waited for the clock to tick away.  At some point my nurse (savior) gave me an injection of demerol or some other very lovely pain med and I slept for quite awhile.


As long as I felt okay on Saturday the docs would order another IVig and release me.  O'Bleness was able to administer my last two treatments.  Yahoo!!!


Aug. 21st.  I cannot believe I was inpatient these days.  Totally unexpected.  With so many GBS patients ending up on a vent and temporarily paralyzed I believe Dr. Arce made the best decision for me.  If you read about GBS many people have a difficult time being diagnosed.  Dr.  Arce called it correctly during my initial visit with him.


No, my headaches were not gone.  But hell or high water I was going home.  The blood patch should begin to have its affects but I wasn't feeling so.  They got my IVig started early.  The neurologists came to see me, talk about follow up and release me.  


Tony and Anthony got me in a wheelchair, I said my "good-byes" and down the elevator we went.  I could ride in the front with the seat all the way back.  I think it odd to leave the hospital feeling worse than when I entered it.  Home to the comfort of my own bed.  At this point, headaches were, at times, unbearable (blood patch not quite successful in my eyes) and my feet and hands were still numb and tingly (kind of secondary concern for me).  Sleep and plans to go to O'Bleness Sunday for my next treatment.