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.