An unexpected bright spot to today

First off, I want to say THANK YOU to everyone that communicated such love and support to me today.  I had to re-read what I posted last night for fear that I wrote something that made me sound like I was completely losing it.  Luckily I hadn't, but what I had written was the real, raw truth, and I'm always happy to convey that at least.

One thing I forgot to mention in my post yesterday was another side effect that I'm experiencing now....neuropathy.  Some of the symptoms of neuropathy (according to Mayo Clinic's website) are:

• Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
• Sharp, jabbing or burning pain
• Extreme sensitivity to touch
• Lack of coordination and falling
• Muscle weakness or paralysis if motor nerves are affected

I've actually had these symptoms for awhile now, but I would always attribute it to a plasmapheresis treatment.  Some days I would come home and not feel awesome, so I'd like on the sofa until I felt better, only I never got better those days.  I'd have these symptoms and remain "couch-ridden" the rest of the day.  But then it happened on the plane ride home on Sunday from Florida, and I just couldn't move my limbs and wanted nothing more than to lie down.  It had been 4 days since a PP treatment by that point.  I described this to my nurse at PP on Monday and she said that it wouldn't be  due to PP, but maybe to some other medicine.  It happened again Tuesday afternoon when I had sat down to read a book, and I couldn't deny that something was off.

So, of course I turn to my trusty friend Google, and researched neuropathy and it was describing exactly how I was feeling.  It's good to have a name for something you experience when describing it to others.   And then I drove to Mayo this morning for plasmapheresis treatment #47.  All went well and I was able to see Dr. Cosio to talk about the neuropathy.  Can I mention AGAIN how much I love the nursing staff at the Plasmapheresis unit????  They never make me feel crazy, and really take a good deal of time to ask if I'm experiencing anything unusual, then asking a lot of questions and documenting it all.  My nurse today did that, and then sent a note to my doctor and, lo and behold, there he was at the end of my treatment today.  I don't have an answer yet, but he's going to add some labs to my appointment next Tuesday, specifically to check my ionized calcium.  Plasmapheresis can strip the body of calcium during treatment and I usually need a dose of calcium at the end, but that might not be enough.  Calcium depletion could help explain some of my symptoms too, so we'll see what Tuesday's results show.

Another reason that it was important for me to talk to my doctor about this was so that it was documented in my case notes.  I had gotten a call from my case manager at Cigna yesterday, and he congratulated me on making the trip to Florida.  And then I was like, "Wait..how did HE know I went to Florida?"  And then I realized that my doctor probably wrote it in his notes, and Brandon (my case manager) had just received an update..the SAME case notes that were just sent to my disability company!!!!

So all night yesterday and this morning I've been thinking that there's NO WAY that they will approve my Long Term Disability claim knowing that I went to Florida!  And I was feeling completely doomed.  But, and here's the bright spot, my coordinator at the disability company called this morning and told me that my claim had been APPROVED and that I was good until August!!!  She actually had a doctor look at my file, instead of the committee of people that make these decisions, and he agreed that I was eligible and saw no reason to revisit until August due to my treatment and health status.  This is HUGE news, and a MUCH needed bright spot.  Now, I have no intention of being off of work until August, but it's good to know that I don't have to add the stress of returning to work before I'm ready into this already intense mix of things.  So yay me!

I hate to end on a bad note, but my hair started falling out.  This is from the prograf, and I completely expected it (hell, I've already experienced it before in 2007) but it still completely wrecks the vain woman that lies buried in here.  

Guess it'll be time to try out a few new hairstyles soon...