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.

In the Beginning...Day Three

Cheryl Sylvester.  1/10/62.  Standard opening every time a nurse came in my room to either check my vitals or administer meds.  At least by the third morning the request for "my story" had diminished.  Awake, night pain meds worn off and the thought of having to sit up/walk to pee brought out the bedside potty.  Have I mentioned I now have an IV in each arm? One for drawing blood and anything else that needs to go in and one for the upcoming IVig (has to remain void of any other substances).  The spinal headache made me forget about the GBS diagnosis.  I have had 24 hrs of back labor followed by a c-section, two dislocated shoulders and gall bladder attacks...these were nothing in comparison.  Cold compresses.  Darkness.  Quiet.  Caffeine IV drip (ever hear of that?) helped a bit.  So, a spinal headache occurs because the spinal fluid that constantly circulates is leaking from where they punctured.  The doctors started to discuss doing a blood patch where they use one's own blood to patch the leaky hole.  Right...next topic.


IVig.  A blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) extracted from the plasma of over one thousand blood donors (wikipedia).  $$$$.  Five days in a row is standard protocol for this initial treatment.  The dosage and drip time is based on one's weight.  The major risks are allergic reaction and kidney problems so they start a slow drip, monitor vitals every 30 minutes, and crank up the drip as long as all goes well. Needless to say the first treatment took about five hours.  Not that I cared.  


My great friend, Teri, visited me and brought me ice cream which I could eat while lying flat, cold compress in place and eyes closed.  She got me on the potty too!  Friends.  She also went shopping for me (which she despises) as I needed some pjs (those of you that know me know why).  The Barrs visited that evening and I could actually sit up for a time.  Tony and Anthony of course were by my side each evening.  Bring on the pain meds.


The neurology team continued to see me two or three times each day.  I cannot say enough about them and the entire staff at Riverside....even Vera who answered my call button.  By this time I gave up on "how did I get this?" as I did not have any virus immediately preceding my symptoms nor any of the other possible ways that trigger GBS.  By the way, easier for you to Google GBS than for me to try to explain it.


Sleeping was so-so but at least I had my own room and my IPhone with lots of music.  Pain meds and a sleeping aid helped.

































  

In the Beginning...Day Two (con't)

One should refrain from quickly looking up a diagnosis.  The neurologists came back in within a half hour or so, saw that I was quite upset and again reassured me that they caught it early and treatment would start the next day.  They were very informative about the initial diagnosis, patient and young (lol!!!).  I still did not know the extent of GBS nor the details of the treatment (five days of IVig) they intended to begin.  However, I believed and trusted that I was in the best place for care.


The spinal headache had really started to gain momentum and all I wanted was darkness and quiet.  Thank the good Lord...Jaime, my nurse, who knows the Kostohryz's, got me an awesome private room and moved me in that afternoon (8/18).  I will forever be grateful for her.  Tony and Anthony arrived early evening and it was all I could do to even open an eye let alone explain my diagnosis.  They got me a cold washcloth and for the next three days all I wanted was the cold cloth on my eyes, quiet and all the pain meds they could bring on.  If I tried to sit up I experienced the most unbearable, head splitting pain ever...thus I needed help just getting to the bathroom that night.  I sent my guys on their way around 8 but I soon called them back (this I will never forget as I am a strong gal but this was the start of the vulnerability of being ill).  They stayed a while longer while I tried to relax.  My evening nurse fed me some pain meds and I eventually slept a bit (after the guys left for home).  

In the Beginning...Day Two

As that first afternoon passed we became quite impressed with Riverside's staff.  Wow!!!  Each person took the time to introduce themselves and ask about my story.  I must have given my medical history and my current story at least five times in that first three hours.  One would think....can you all just type this in that computer for all to see instead of writing it on that half piece of paper (really!!!).  Did I mention how young and cute all the docs and staff were?  The first young intern did not know much about Guillian Barre (and we certainly did not) but he whipped out his IPhone to do some research.  Even at that point we were unaware of the potential dangers of this diagnosis.

Tony got me dinner, settled in and I sent him home for the night.  My apprehension grew a bit over night but I still held strong to "no big deal" that my feet/fingers were numb and tingly.

Riverside Spa Basket

The next morning I was up early, used my great spa basket and got ready for the tests that were scheduled.  A head MRI, spinal tap and an EMG.  Keep in mind it was still unclear as to exactly what all this meant. 

The MRI was up first.  Rolling down to what I saw as the basement anxiety crept up on me. The two very nice and patient gals got me on the MRI table, asked me a few questions and explained what to expect for the hour-long MRI.  The first thing was ear plugs at which point I closed my eyes.  Well, I should have kept them shut.  I heard a bar snap around my head (so much for the ear plugs) and my eyes flew open just in time to see the bar/grid snap in about an inch from my face.  I jumped out of my skin, hands flew under that bar ripping out the ear plugs and my panic pegged.  The gals unstrapped me, calmed me down and we decided we would do this later in the day under a sedative.  Whew!!!

So, off to the spinal tap and by definition fairly scary.  Again, kind of a dim basement with Frankenstein-type equipment...or at least to me it would be so.  Again, great staff explained the procedure and, hey, if I want I can watch it on the screen.  Sure thing!!!  The doctor does the tap under a fluoroscope so really navigating around the spine and in to the sac is easy!  They numbed my lower back but told me I would still feel some pressure (which I did).  Once the doctor got the probably very long needle in he told me they would now take 9ccs of fluid.  To get it to drain out they tipped the table while telling me not to worry my feet would touch the steel plate at the bottom (did they not get the numb memo?)  All in all a rather unnerving, 15 minute process.  And...let's not forget the 30% or so that get the spinal headache.  

Back in my room (still asking for a private room) now I tried to lay still but was then interrupted by two doctors to conduct the EMG.  Most of us, fortunately, have never had an EMG.  They basically send electric impulses through your body to determine nerve conduction.  This along with the spinal tap (to determine protein levels) are two definitive tests for GBS.  The EMG was probably about an hour or so and I could feel the headache starting.  The EMG was not particularly painful...just uncomfortable and strange.

Mid-afternoon three neurologists came in my room (Tony was not there yet) and delivered the GBS diagnosis.  They told me we caught it early and that we would begin a treatment plan as soon as they conferred with Dr. Arce.  In the meantime, I looked up GBS on my phone and promptly fell apart.  

In the Beginning...

I can say that I really did not believe I would ever have much to "say" let alone blog however life has changed a bit for me.  This blog (where did that word come from?) will allow me the following:

1.  a chance to explain to others what I have been diagnosed with
2.  a way to exercise my hands/fingers
3.  an opportunity to share how blessed I am
4.  maybe get off Tony's nerve/back for a few minutes
5.  get away from horrible daytime tv
6.  a place to share what I have learned and continue to learn everyday

I am not a great writer, my vocabulary stinks and I tend to use lots of "....".  No apologies.

For those of you who do not know me well or otherwise...a bit of background.  I grew up outside of the Youngstown-Warren area in a one-light town, Vienna.  My childhood was typical, I was a somewhat wild teen and ended up coming to Ohio University.  Athens is a small town in the southeastern hills and is the quintessential college town.  Fall is my favorite time of the year and so in this part of the world combined with the setting of OU, my love of the area and people grew.  I finished my BSJ and during my time studying for my MA I met my current husband, Tony.  Too many details associated with that journey but know that we have been together since 1985 and have an awesome 20-year-old son now at OU (living the dream).  I have worked as an employee benefits consultant at the same company for 15 years and my husband has his own business.

I have always been a healthy woman, tried to live a healthy and active life.  Golfing, gardening, cooking and a very independent career is what I counted on every day.  My family and friends centered my life and my social activities never lacked.  Late June/early July 2010 the top third of both of my feet went numb and tingly.  I thought it was a pinched nerve and, of course, blew it off.  It was a bit aggravating and I tended to laugh it off until late July when, on our annual girls' golf trip, my fingertips went numb/tingly.  I knew there was a more serious issue developing.  When we got back my pcp did not know what was wrong so he referred me to a neurologist in Columbus.

August 16th.  Dr. Arce.  Examination and many questions of me.  Neuropathy.  Possible GBS...whatever that is...he puts me in Riverside that day.  Seriously?  I was totally unprepared for that one!  Luckily, Tony and I had time to get a great lunch (always important) and get a few things at Target.  We checked in to Riverside that afternoon, double room (I started to ask for a private room as soon as we checked in) and no clue as to what lie ahead.  All fun and games that first afternoon.  The next morning was a totally different story.

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