dancing with a limp

Yesterday just beat me down six ways to Sunday.

My new doc was very kind – but full of not-great-news.

Questions about why my hips are falling apart with a different kind of arthritis? Turns out that is still RA related and to be expected. Sooo I need to be getting my head around these major hip problems and what I plan to do about them. New hips in my early 40’s, anybody?

He actually agreed that the scoliosis that wasn’t found until I was an adult is contributing to my spinal pain – and gave me this ridiculous looking brace to wear when I need to. But look ridiculous I will if it stops the pain. Still it added to yesterday’s suck for sure.

As they are a “pain management” office, though I will not be taking the traditional “pain management” medication plan,  I was still run through the ringer – drug screens, a million questions. As a nurse, I knew to expect this, but as a patient it still, frankly, makes you feel like shit. I was not there to seek drugs. I was there because every day of my life is spent in excruciating pain, from my broken feet, to my burning spine, to my jackhammering knees, to my throbbing hands, to my tender to walk on ankles, to hips that are locking up and killing me. And, again, we were there for HOURS.  #fixitjesus

Then we got home and got settled.

Then I had a long talk with my son’s father – who I have a great co-parenting relationship with – about my son’s desire to basically be at his dad’s house most of the time and visit at mine. This was not unexpected – we’ve known it for a long time – and is totally age appropriate. It just came with the realization that my son is thinking that I don’t have enough attention to offer him – but he doesn’t have the understanding that it is because I am terribly sick.

And I was still just sick as Hale yesterday too.

So I finally just Lost. It.

And then abandoned all Vegan Healthy Eating for Casa de Waffle’.

And cried a flipping river.

But, as always, we survived.

And then I got some sleep.

Some real sleep for the first time in quite a while:

2 bd 1

 

Yas, you are reading that right: 11 hours and 17 minutes. Unheard of in these parts.

And today I’m having some crazy weird symptoms – face and hands freakishly and unstoppably tingling anybody? – and plenty o’ pain – but I’m human again.

So I looked over my calendar.

And all those flipping doctor’s appointments.

And I – so very seriously – have to remind myself to have a moment of gratitude for the excellent health insurance my husband works so hard for that covers my insane healthcare costs and to think of what would have happened to me if I had gotten sick during my agency nursing days when I lived sans health coverage. And so to remember not to complain – too much 😉 – about those blame appointments.

And then I look at our shows on the calendar (live music is my jam). Assorted gifts with a few $20 Instagram sales thrown in.

For me, with this health wild rumpus I’m facing, it’s so important for my mental health to have at least one upcoming event that isn’t healthcare related to look forward to at all times.

So, in our city, especially in the summer, when the el cheapo deals pop up for the 90’s bands for next to nothing, I swipe them up and start making plans.

And, right now, if those plans end up involving the rollator or the cane with chair on a bad day, well, they just do.

And then I did some work on my book for the day as well, as I am so freaking excited about it.

Starting it after I’ve wanted to for so so long has been amazing for my mental health – which is much needed when all hell breaks loose at once.

And I want to really encourage my spoonie sisters to do the same.

Whatever it is that you love, please find a way to keep something you are passionate about on your calendar at all times – and also to keep some project you love going – amid the neverending doctor’s appointments.

It is a lifesaver when the Weeks From Hale hit.

And the kids are acting all Homer-esque.

And the unexplained symptoms are mounting.

We can’t be hanging around just to be professional patients. That will never be enough to keep us going in the bad places.

As Anne says, we have to learn to dance with a limp.

Be well, everybody.

Grace and blessings.

 

 

 

 

 

 

 

 

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