One (or two… or maybe three) In A Million (or so)

Ever been told that you are one in a million?  I’ve heard that being suggested as a compliment but sometimes it’s not so much… If you have RA, being told that you are one in a million (or more precisely one in roughly a million and a half) isn’t really something to feel flattered by.

Last week was quite a week.  I went to another conference (this one in Cleveland) to present my Cross Cultural Communication presentation and it went remarkably well.  It was rather depressing to have just about 10 people attending my session, but I was up against some really big names in the technology sector and soft skills isn’t something that people generally flock to.  It went well, I had fun… not sure how to take some of the subsequent remarks when I got back to work… but… eh…

This week also brought the diagnosis for my daughter that what is going on in her wrist(s) is seronegative RA.  Her joints were not only inflamed but also overly warm to the touch.  She started, immediately, on prednisone.  She started a couple days later on plaquinil.

I’ve been beating myself up, a lot, again, since her diagnosis.  I was really hoping the rheumy would tell her that it was ‘just’ repetitive stress and give her something to help until she adjusts to her new job.  I was hoping that my 22 year old isn’t looking at RA.  I was hoping.

So now me… Squirrel Girl… and Monkey Butt all have inflammatory arthritis conditions.  Yay us… I’be been blaming myself pretty heavily and yes I know I shouldn’t and yes I know it’s not right, but

The prednisone is messing up her sleep schedule but is helping with the pain and inflammation.  I gave her tiger balm and valpurin gel.  She’s doing pretty well and the combination of everything is helping take down the pain.  I’m proud of her, she’s been taking her pills on time every day since the diagnosis and eating breakfast so the prednisone doesn’t make her stomach yikky.

I wish Monkey Butt would be taking his meds as regularly… 😦

Today is ‘that time of the month’ again for me (also known as infusion day).  The Indians won over the weekend so I can get a free iced coffee on my way to the infusion and I think I’m going to stop at the Vitamin Shoppe on the way home to see if they have the new Tiger Balm… if I’m not running too much too late for my conference call.  I really want to try the new stuff.

I got a phone call from Bear’s sister over the weekend.  She’s 81 and has RA as well.  She asked what I do to fight the exhaustion… the HORRIBLE pain… all of the wonderfulness of RA.  She’s been on Plaquinil and prednisone for three years and something isn’t doing what it was doing before.  She thinks the doctor will tell her it’s time to add in a biologic.

Sometimes the world comes crashing down around you.

And sometimes you shore up your walls and work to shoulder all that needs to be shouldered.  I think I’ll keep cutting those windows in my walls.

 

love and light
April Wells
5/22/17

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