a bad spoonie day

While I’ve been posting about the things I’ve been working on – oils, coaching, writing – my illness has had its own agenda.

I can’t explain how exhausting doctor’s days are with RA.

Today it was the Rheumy and Sara went with me.

We arrived at Princeton at about 10:45 AM and the line for Valet was insane so we had to park in the parking lot and go for the long hike to my doctor’s office on my broken feet.

When we got there and signed in, it was obvious that he was behind. After we had been waiting for about 20 minutes in the chairs from Hale (and I was feeling ruff), he appeared to call back two drug reps (which I have never seen him do before) and his nurse called back another patient. At that point, I knew we were in trouble because, to his credit, he does spend a good deal of time with each patient – but we were in for a long wait.

Then lunch arrived for the staff.

We waited another 15 or so minutes and were called to the back and my vitals were checked and we were sent to an exam room.

When my doctor came in, he went through the usual questions and exam.

As (bad) luck would have it, my pain exploded today for no apparent reason and all of this poking and prodding was just fantastic.

He then sent in all of my meds to my pharmacy and sent me to the lab to be drained.

Finally, we checked out and hobbled back to Janis the Bug.

By then, it was 1 PM.

And I was in misery.

When we finally made it home, I crawled up the stairs, changed clothes, and crashed.

When Sara came to wake me several hours later, it took her over an hour to do so because I kept falling back asleep while sitting up.

And now?

My pain is ridiculous.

And tomorrow morning is an appointment with a brand new doctor – a much-needed one – but it will literally take hours. #fixitjesus.

AND I realized that when I get home from said appointment, tomorrow HAS to be laundry day – only because I will be changing into my last pair of clean leggings upon my return. Yes, this is a spoonie wardrobe crisis.

Oh, and while I was cooking dinner, the sleep doctor I’ve been referred to called – at 8PM!!! – to reschedule the appointment I cancelled earlier this year. And I had to do so because my sleep issues and snoring have gotten ridiculous. So add another flipping doctor’s appointment next week – meaning, if I don’t rearrange something, I have THREE appointments next week (oh, Imma rearrange something).

AND I had to go to the pharmacy to pick up meds again today. And it was expensive – even though I didn’t pick up everything. And I was just there yesterday. So I just cried. Because I am incredibly frustrated at the cost of all of this and the delay with disability – my Rheumy just asked me about it today – and the fact I can’t work or walk much or contribute. It’s been one of those days.

And it’s all ten times worse when I’m hurting.

I’m a little overwhelmed right now.

Aughhhhhhhhhh!!!!!

So, it’s important to be honest about the helluva bad days too, I think.

And to regroup.

After tomorrow, there is nothing scheduled for Thursday or Friday and we literally will not leave home. Sara has schoolwork and I have plenty to do myself with schoolwork as well as coaching stuff and writing to work on – all of which will be done from bed if I’m feeling up to it.

If I still I am feeling this crummy, Thursday will be Disney movie and reading and rest day and then I’ll see how I’m doing on Friday.

Spoonie life is hard sometimes.

But I’m tough and incredibly blessed by a wonderful husband and my Buggle and my Wonderpup and our amazing family and a strong support system.

I’ll keep on pushing through.

#spooniestrong

Be well, everybody.

Grace and blessings.

 

*An addendum – Y’all know I’m listening to my Queer Eye episodes I haven’t seen yet as I write, and, literally just as I posted this, Karamo quoted his granny as saying, “Shit is the best fertilizer because it makes flowers grow.” Bahahaha! So I’m going to take that as a sign that this shitshow of a day/start to my week is going to grow some beautiful flowers. Love my QE guys. Take care, y’all.

 

 

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