The New Normal
A few weeks ago, I was watching an episode of “Sons of Anarchy” (if you’re not watching this show, you really should. Lots of violence, drugs, sex and Charlie Hunnam flexing and being all bad boy outlaw. Writing is fantastic as is the acting…the one show I never miss) – one line really struck me, really hit home for us. Tara, after finding out about a death threat, says to Gemma, “Normal people call the authorities when their lives are threatened” and Gemma says:
“You don’t have a normal life baby- you have this one”.
And that’s where we are today …living life with a new normal. Or trying to anyway.
Every day brings its own set of challenges for Queenie and, by extension, for us, too. Watching her struggle is hard for us, since we want to FIX IT, dammit! Unfortunately, there is no fixing this one so we have no choice but to make it part of our every day routine. Lymphadema has once again reared it’s ugly head and it’s really made our Queenie miserable. Luckily, the therapist agrees that the pattern of liners and bandages is one that’s not working. Queenie can’t manage it well on her own and it’s a big time suck. On a good day it takes us an hour just to do her legs and feet and it’s exhausting for both of us. She is waiting on a lymphadema pump/inflatable pant and we’re keeping our fingers crossed that this will work well.
We are also in a struggle with pain. Since coming home, she’s had quite a lot of it, especially in her hands and arms. We’re not sure why but for now, her neuro is making some drug changes and adding a Fentanyl patch. I have my own ideas about pain management but we’ll see how the Fentanyl takes care of things.
But the biggest struggle I think for Queenie right now is the one going on in her head … she has a lot of thinking going on about the kind of care she wants/needs as well as some tough decisions to make for the future. It’s a scary thing to be Queenie right now and I don’t envy the things she’s got to think about. I suppose these are things all of us should think AND talk about but it’s far easier to do that when one isn’t looking down the barrel of a chronic illness like MS.
There is, however, GOOD stuff going on. Queenie’s been approved for our local paratransit service so can travel within the county in the comfort of her chair. She can go to some doctor’s appointments, go shopping, get her hair done …all without having to depend on one of us to go along and manage a manual wheelchair. For now she’s limited to our county but we’re hoping that will change in the near future. Let’s hear it for our Tax Dollars at work!
This Thursday will mark exactly 2 months since Queenie came home to us. A lot has changed, some good, some bad but she is HOME. We still have lots of things we’d like to do to make things easier for her & us here at home but that will come in time. Big Daddy & I will be going away this weekend to enjoy some fishing (him) & knitting (me) and Queenie will be able to enjoy the house without us for awhile (my cousin from NY is coming to keep her company & help with the furbabies so she won’t be totally alone). Plus, she’ll be able to do some fun things, too…get her nails done, have a nice dinner out…it will be a nice break for all of us I think. We’ll all come back relaxed & refreshed and ready to resume our Newly Normal Lives.