Fortunately and Unfortunately, I'm pretty much at a "status quo" :
Fortunately, very fortunately, I am in REMISSION and my Stats are good (below)
Unfortunately, I am still Neuropathically Electrofied most all the time!!
I've been trying to find an appropriate analogy to describe my crazy Neuropathy symptoms...
So here's what i've come up with for you:
At night while trying to sleep my HANDS and forearms "fall asleep"- ironically them being "asleep" AWAKENS me... my Hands and Fingers feel like heavy potatoes with tingling sprouted roots attached!
My FEET when I try to get up to move around are like flat wooden boards
Last month I would do laps around my house to get my circulation going
But seriously, who the helloooo wants to exercise at 2, 3, 4, 5 in the morning!!!!
So I stopped that
So now I just get up and shake my limbs VIGOROUSLY until I'm pissed off enough about my continuous interrupted sleep... and just drop back into bed, willing myself back to sleep... until I am sabotaged again
Typing this out made me realize the ridiculous ironies here:
My limbs fall "ASLEEP", preventing me from SLEEPING!
The BLOOD needing to be circulated to stimulate the nerves to lessen the tingling/burning sensations so I can sleep... is WHAT began this WHOLE drama ...
BAD BLOOD CIRCULATING WITH MYELOMA CELLS!!!!!!!!!!!!!!!!
aaarrrggghhhh!! this is so crazy for once healthy-as-a-horse-Julie...
Here's a totally October apropos visual analogy for you of how I feel:
Yay on the remission, boo on the PN. I didn't realise that when I wake up with that pins and needles in my hands and arm(s) that could be PN - well you live and learn - fortunately.ReplyDelete
Oh, and I used to work with someone whose surname was Tingling - I always thought it might be quite exciting to be Mrs Tingling but maybe not! ;D
Lots of love Julie. Keep those great stats! So happy that you are in remission (and keeping the maint. of it with your Revlimid)!ReplyDelete
Can't imagine my life without you and so glad I won't have to. :)
You have to pursue writing comedy. That sense of humor of yours is one of a kind. As always i am in awe.....looking forward to the next exciting adventure of Kick Ass "on the Myelo" Woman.ReplyDelete
Hi Julie, stopping by to check in on my friend. SO happy you are in remission....hoping the other systems go away!!! Thanks for all the fun updates.........humor goes a LONG way!!!! Love.ReplyDelete
Really glad you are keeping your humor.The pictures add alot.Tell Alissa she looks real sharp.Keep smiling (I know you will) and knowReplyDelete
this too will pass.You truly deserve all the wonderful friends you have!!
Sorry to hear about the severity of your Neuropathy. My feet feel like they are on fire and hurt to walk on them. However I sleep soundly all through the night probably as a result of the pain killers which all seem to say the side effects are drowsiness and sedation. Well they got that right as I often feel like a junkie. After a few months of this either I have learned how to deal with pain or figured out a regime of spreading out the multitudes of pills to limit the pain. I'm impressed with your website and the energy you have to keep it going and interesting. You mentioned loss of energy - yep and in my case I can add apathy which I sorely miss. Keep up your humorous commets and good spirits.ReplyDelete