A Few Things I Have Learned and Am Learning...

1.   Daytime tv sucks.  News churns all day long.
2.   Ellen, Oprah and me...bffs...Dr. Oz makes me crazy.
3.   My family is the best...good times and bad.
4.   I have the very, very best friends in the whole world...and they can cook!
5.   I can live (sort of) with shaving once a week...in my chair by the sink.
6.   My old dog's snoring is comforting when home alone.
7.   There is a big difference in lonely and being alone.  
8.   The Twilight movie series is actually quite good.
9.   I totally suck at Words with Friends and yet I still play.
10. It takes much practice to stay present in life.
11. I love Anderson Cooper...and...Steven Tyler!
12. I miss cooking.
13. I have faith in humanity.
14. Life is not neat and tidy.
15. Much of my bucket list revolves around food.
16. Nature teaches us so very much.

April Showers...

I have been remiss in updates...I apologize.  Today I would like to get you caught up to current.  Back from Florida and in to our daily routine...now a bit easier because of my fancy gadget allowing Tony some freedom.  We also were now utilizing a gait belt to lift me, particularly when getting in and out of the car.  


April 4th and 5th brought two more IVig treatments; nothing remarkable except having three iv sticks before the fourth successful one...ugh!  The afternoon of the 5th was a delight as five of my agents from Jackson stopped at my house to see me!  We laughed and talked some business...they just brighten my world and it was awesome to see them! 


April 6th was my visit with Dr. Arce and the long-awaited EMG.  Since I had one in August and then in December we were anxious to see how I was improving.  I knew I had not gotten any worse since Dec/Jan and I felt some improvement in my forearms.  I have to say (maybe, again) that I really like Dr. Arce...he takes his time, asks questions, laughs with us and generally cares.  The EMG showed a slight improvement in my arms and absolutely nothing in my legs (totally expected).  Our visit was productive...we agreed that the IVig was at the least stabilizing me and seemed to be working (slowly, of course)...prednisone was still only a last resort and we were not at that point (long-term use as I would need is very risky)...so, indefinite IVig treatments and back to see Dr. Arce July 12th.  When I inquired about thoughts of going back to work he was quite adamant that he has no intention of releasing me any time soon...patience.  Alrighty then!!!  As I told Teri, I am lucky with Dr. Arce...as I read more many GBS/CIDP cases go undiagnosed or misdiagnosed...Dr. Arce called it the day I was in his office.  No unnecessary doctors or tests...lucky!


And so, April was filled with fabulous friends visiting and bringing just as fabulous meals.  Wow!!!  I remained on the Women Raise the Roof (Habitat for Humanity) golf tournament committee and so spent lots of time on the phone raising money/sponsors.  We held meetings at my house and the tournament was a success (April 30th)! Ask me about current events, Ellen, Oprah or Facebook/Twitter action...I can tell you...I did get an Ipad 2 in April and it is super cool (still learning).  Anthony usually visited Friday afternoons and we could spend a little time chatting (me asking questions) and catching up (more questions)...We celebrated a great friend's 60th, joined Lori and her family for Easter and just generally tried to live our lives as best we could...

Give up waiting as a state of mind.  When you catch yourself slipping into waiting, snap out of it.  Come into the present moment.  Just be, and enjoy being.  If you are present, there is never any need for you to wait for anything.

I took a break from physical therapy as my benefit is quite limited and there was not much else to do for me that I cannot do at home.  While at pt in March I was asked to volunteer to be a case study for Ohio University pt students.  I agreed as to help someone else through my CIDP would be welcome.  There were six students plus their instructor, Michelle.  We started with about a 45 minute phone interview in which I gave them detailed background and they asked questions.  The next step was for them to come to the house and conduct a thorough assessment of my abilities, or lack thereof.  The students came to our house April 26th.  What a great bunch!  They put me through the wringer but they also came away with a better understanding of our life at home.  They were professional, polite, well-educated and fun!  We laughed but worked hard. The visit was about an hour and a half.  Next up...early May class presentation.


April showers.  Understatement.  I love to work outside, cut grass, garden etc but that was not going to happen this year.  So, we hired a lawn service and a young man to work my flower beds/pots, power wash etc.  Unfortunately, not much got done in April.  Rain, rain, rain!  Speaking of which...if you can visualize "my space"...my recliner sits in the corner between two windows.  I love having the windows open (yes, with the heat or a/c on too...yes, I see the $$$ going out those windows)...typical decent morning in Athens, so my window is open...well, a storm with wild winds whips up and I am getting rained on in my chair...no way for me to shut the window...no umbrella and no poncho handy!!! Luckily, by the time I called Tony the storm was winding down...(please do not send rain gear...lol).  We laughed and laughed about it....got to have a sense of humor!

Finishing up the Winter

Mid February...six months since my original diagnosis. Time goes slow yet here we are at six months.  Dr. Arce gave me six to 12 months recovery time when we thought it was GBS...so, even without CIDP, I was still only halfway....time and patience...ugh!  My Feb. visit with Dr. Arce was fairly unremarkable;  he was glad that after seven bags (treatments) of IVig so far I was tolerating it well.


We found ourselves planning days, errands, Tony's business responsibilities around my seemingly endless need to go to the bathroom...three hours was my limit...whew, some days!  Fridays are his longest days so Anthony would finish up classes (or so he said...lol) and come out to the house to visit me.  The first couple of times he had to help me in the bathroom were a bit horrifying for him, but eventually he got used to it...great young man!  


The rest of February was spent doing some pt, reading, watching some tv and just biding my time.  It seemed that I had a meltdown every 10 days or so...mostly it was out of frustration and was short lived.  Tony was/is such a caring husband but he too would get frustrated and tired.  I continued to read and practice my daily reflections for which I was so very thankful.


Our friends, as always, took such very, very good care of us.  Joan suggested we start to utilize an online meal schedule to ease the coordination...great!  I have never, ever experienced such incredible support from others...and I have had the wonderful fortune of getting to better know some of our friends.  Often times, through misfortune, one finds other treasures.  We have done just that in so many ways.  I've even re-connected with a few high school friends.  The thoughtful cards are stacked up...wow!  How will we ever be able to express our love and appreciation?


The next big decision for me was whether to take official medical leave from work.  My short-term disability was to run out Feb 22nd and there really was no way that I was going back to work any time soon.  Luckily, or maybe some calculated thought years ago, I bought a long-term disability policy and made claim and took my leave.  This was a very difficult decision for me as I have always loved my job and my co-workers but, for my health, I had to take the time to heal. I had serious concerns about permanently losing my job however I could not stress about it now;  this was something out of my control.  


March.  Two more IVig treatments.  No physical improvements but certainly no worse.  My pt was once a week and I continued to work some exercises at home.  Spring break tradition with Anthony, his buddies and my folks at their condo was around the corner.  The only way we would/could go is if Tony and I were able to rent a ground-floor unit as there was no way we could handle the stress of steps.  I knew Tony really needed a break and I sure felt like the walls were closing in around me...except for the occasional "wheel" through Kroger's my activities were quite limited...My mom did find us a unit a couple of buildings down and so off we went...


Anthony and his two buddies drove and stayed with my folks.  Tony and I got a direct flight (airlines make it fairly easy for the disabled to travel).  Our plan was to stay a week in Bonita Springs where we could enjoy break with my family and the boys, Tony could golf and I could enjoy some warm air and sunshine...if even from my wheelchair.  So, the days were filled with some pool time (I could not get in but enjoyed it anyway), relaxing on the lanai, laughing with the boys (they drink a lot of beer!) and enjoying my parents and their lovely friends.  The ground floor unit worked perfectly for us.  The boys carried me in my chair up and down my parent's steps a few times so that we could have dinner...a bit scary but they did it...great guys!


As I said earlier, days/activities are planned around Tony getting me to the bathroom...this may be a case of too much info so feel free to skip this part...such was the case in Florida too.  He wanted to golf as did the guys but the pressure to take care of me was stressful...so, after some "discussion", I relented to buy and try a female urinal (who knew such a thing existed???)...and, no I am not posting a picture!  Well, it worked and it allowed everyone some freedom to enjoy their vacation.  Humiliating?  Yep.  Necessary "sacrifice" on my part?  Absolutely.

After the week in Bonita we spent time with Teri and Kenny Kerr in Lauderdale.  They have a wonderfully perfect beach condo that is totally accessible for me.  We relaxed by the pool, ate at all our favorite places, drank and had many laughs.  The ocean is so calming and captivating...we even got to spend time with a co-worker and his family who rent a place down the street...awesome friends and a much needed respite for Tony and me.