Sunday, January 17, 2016

On Any Given Sunday with Crohns & Cushings

"I imagine you don't want the sacrament?"
Dad asked as he opened my door.
Face planted into my bed,  I focused on breathing through the feeling of a knife stuck through my sternum and driven into my back. For a few days I have had a reprieve of being shot through the chest but now, tapering off prednisone after only a few days stint up higher, I feel the pain of the esophageal stricture. The one that they just opened up and was my Christmas present.
Oh, the relief at first even if it needed to heal!
The closing off of my esophagus seems to be the addition to my family of  health faulures due to prednisone. Or Crohns. Or Cushings. Or whatever.
The air is cold in my room right now and snow has been falling steadily. It should be a time when J. and I are rejoicing, preparing to head up to the hills and let him ride.
EVEN he has been affected by the weather and his lungs have given him a nice hacking cough the last three weeks. Thanks to rescue inhalers and such we are trying to "get on top of" his asthma.
What is the deal with our lungs?
Back to the sacrament........
"No, I don't feel like I am presentable." I replied thinking of the mismatched greens I was wearing, thick wool socks with a funky design, and a merino shirt under it to wick the sweat away. I should have walked upstairs and sucked up my pride.
The truth was, I wished I had a straw I could extend up to the living room and sip the sacrament down. It sounds irreverent or possibly a Dr. Suess'-ish lazy way to get it, but that is how I feel.
The three days I kept my busy mind on some crafts and accomplished a few things like learning how to make these little fairy dolls out of craft wire and cross stitch floss.
A tutorial on Youtube of these fairies is by the Untidy Crafter or something. She does a good demo and I need to learn how to do the hair a bit better. The red head still needs a salon visit. Their cute if you have little girls. Or nieces. . Just use old flower petals for the skirts. Pretty cute idea for young women project too.
Anyway, mom shared some of church with me and it was touching. I wish I could have been there.
If you are reading this and are in my ward, know I am thinking of you and hope the best.
I had a friend perform in sacrament meeting and she was really worried all week that she would give a "Good" performance.
This gal can play immaculately. I would have settled for a B performance if it were me doing the performing but was touched that she would put the hours of practice in and the worry.
That is what people who love the Savior do; they give their best.
I hope that I am doing that with the time I am given. A lot of it is via letters ( a lot unsent yet)
and emails. I know a lot of women in my ward are going through their own personal trials and I feel for them.
As some get to stages of a situation that I have been along, I squeeze my eyes tight and imagine to that moment when I went through it and hope that they can hold too.
I'm grateful for friends and family to talk to as I go through my trials.  A lot don't have a big family or support system. It is crucial when you are dealing with health issues. Don't be afraid to ask for help. Write down what helps and what needs to be done if a crisis hits because sometimes you yourself can forget what needs to happen!
Do whatever you can to stay positive. I think I read on Addison's cancer page that if "we knew what ONE negative thought can do, we wouldn't even think it."
that kid is so cute.
He makes things to help support his ongoing trips to the hospital and I love the necklace he beaded for me.
Another hero for the books. 

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