Dear IF, July 21, 2017

Dear IF

The homecoming parade was kind of awesome the other night. Squirrel and I drove and parked on our way home from Cleveland. Bear walked from home and then walked back home. He made it with 25 minutes of oxygen left. He was tired (it was too freaking hot and humid) but he made the round trip. Stubborn idiot wouldn’t cave in and come home with Squirrel and I. I think the best part of the parade was when one on my infusion nurses made the whole trip across the street to hand me a Cleveland Clinic basketball stress ball. It made me really smile.

Today, bear is feeling less than fabulous. He started to clean the house up and he was pushing too terribly hard trying to get back ahead of it. He pushed too hard and played himself out and really started to beat himself up. I worry so much about him and the way his head gets too wrapped around not living for today and just being gentle with himself when he needs to be gentle because he has really good days and really not so good days but he seems to figure he should have to be less than human.

I hate pulmonary fibrosis.
I hate it with every fiber of my being.

I’ve started putting together Haikus again. I’ve been so choked and lost and words have pretty much escaped me. Words are starting to come back. Sometimes they come slowly. Sometimes they come stupidly and I am totally lost in what they don’t seem to be able to mean. Sometimes what they say is still feeling very dark. But the words are starting to come back.

I finished Squirrel’s cardigan in plenty of time for her birthday. It looks good and she seems happy with it. I hope she wears it when the weather is right. If history repeats itself, I have my doubts… See the photo I’ve enclosed. I think the green one I am making myself next is going to be longer than the black/gray one… more like this on her. My first one I was trying so hard to follow the pattern (and both I tried to work too hard too fast at the expense of my fingers and hands… thank goodness for my CBD BooBoo oil) but with the purple one I just thought through the number of extra granny chunks I needed to add to make it sit right on Squirrel’s frame. OH, and I love the way the ”cakes” work up color wise. I have my eye on some really nifty wool that I want to try to work with then I am going to grab some of the cakes from Pat Catan’s because the colors there are incredible.

Today I go to meet with one of the women from the Clinic Pulmonary Fibrosis support group. We are meeting at Panera to talk about starting up the new group. I already started the Facebook group and a website and started to pull together some contacts at the other hospitals and the PFF who might be able to help us. I need to contact the drug companies, too, I think to see if they can be of any support to the… uh… support group. I think maybe Michelle will be my first contact there. The physical support group is for Northeast Ohio patients only and the Facebook group is closed, but I will send you more details when we are a little further along this rabbit trail.

I have to try hard to make sure that I don’t put too much on myself in all of this. When I do that, it pisses my RA off something awful and I run myself into the ground. I don’t want another flare and I certainly don’t want to be too exhausted to function.

It’s incredibly warm again this morning, and the humidity is way up again. I don’t mind the temperature but I hate the humidity. It makes ME not be able to breathe well, I know it beats the snot out of bear when he tries to be in the outside.

Time to ready myself to face my Friday, IF.

Love and Light
April
7/21/17

 

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