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Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts

Thursday, June 13, 2013

I feel like writing again

I didn't want to hear it, and a large part of me wanted to pitch a fit. I wanted to stick my fingers in my ears and make nonsense noises and wake up and laugh at the silly dream I just had. 

You need surgery. 

Three small words have upturned the past year. Last autumn I had a back injury that took me out of the game for a few months. I haven't written about this because it has been incredibly depressing. I am a pretty active person and went from going to the gym 3-5x a week to mandatory bed-rest. Just as I was feeling better, my knee buckled out from under me and I couldn't walk. 

This has been a trying 10 months. I haven't cooked, or written about food in the ways that I really love to. I haven't shared as much because I didn't really know how to. Chronic pain zaps a lot of you and makes it hard not to be angry. That combination is exhausting and made it impossible for me to be able to cook and really hard for me to want to write. In hindsight (those are beautiful words!) I wish I had written more. It would have been funny to see the mini milestones documented in the amount of senna I did or did not need while on pain killers. (you know I am only half kidding)

If I have to shine this turd I would say that I have learned two things:
-there is a lot more out of one's control than in
-we are incredibly interconnected and interdependent

Two weeks ago I tried to grab something on the bottom shelf of the grocery store and got stuck. I could bend down, but I haven't built back enough muscle yet to get back up. I looked like a new born horse, minus the cuteness. I had to ask for help.

I have had to ask for a lot of help. I have had to ask for rides, for people to carry anything over a few pounds, for people to slow down, for people to give up their seats. (If you ride public transit never ask someone "do you want this seat" just get up and give it to them. If you don't need the seat let someone else have it without having to beg.)

I have realized that we all need help, a lot of help. Just think about how many people were needed to make the computer you are using right now happen! We rely on so many people very day, but most of these people are invisible and distant. Being sick makes those people very close and highly visible and that can be pretty uncomfortable. I wish we could shake this feeling and just be ok with the fact that today I might need someone to help me stand up, tomorrow another person might need me to hold a door. That isn't bad, it is a good thing, and important thing.

In addition to realizing that asking for help isn't a weakness, I have had to ask myself to chill out.
I am slowly trying to be more compassionate. A big part of that has been acknowledging that my body isn't going to be perfect. Even after surgery and PT and even if I do everything "right" hold on - there is no "right". My body just is. That has probably been the hardest part to accept. Right now this is my body. It sounds so simple, but it is very hard to not think about my aspiration self or past self or what-I-might-look-like-if-I-sucked-in-my-gut-all-day-in-this-outfit self.

For several weeks I needed a cane. It messed with my head more than it should have. Canes, braces, crutches are tools to help us. We live in such a culture of able-bodyism that even knowing that couldn't get me passed what I would look like with a cane. I actually put myself in jeopardy because I was afraid what other people would think of me with a cane. As I type that I realize how incredibly foolish that sounds and how foolish it was. Why do we judge people for using tools? Tools are awesome!

Not so surprising I have lost a lot of muscle and gained weight. This has been really hard to mentally get over. I don't look that different - to others - but I don't feel me. It has been challenging to let go of a lot of negative self image. I didn't know how bad it was until I could no longer feel "guilty" for not exercising. It is weird that now that during the least active part of my life I am the most accepting of my body. There are moments in the day where I am even proud of it - it has accomplished a lot!

Today I was able to walk down stairs, for the first time in 6 months without pain in my knee. This is a huge feat. It means all of the not-so-comfortable physical therapy and less than ideal surgery is working. It also means you should hold on to your hats because more food posts are on their way!

I am grateful for everyone who has helped get me here. I would not have stayed sane without friends. I would not have clean clothing if people didn't do my wash. I would not have kept moving without the motivation of things to look forward to. I am grateful to everyone who has been patient with me, especially grump me, and who has still been able to see that I am a creative person who wants to read, cook, knit, create, watch films, and gossip. I am really grateful for those who fed me. The circle of love, compassion, caring, and help is pretty fantastic.

I am a super dependent person and maybe for the first time ever, I am loving it. 

Friday, May 3, 2013

Gluten free medical bracelet


I never thought I would need a medical bracelet. I have one minor drug sensitivity, if you give me Vicodin  my body will give it right back to you in under 20 minutes. It isn't a huge issue, unless you are 16 year old me post-wisdom teeth extraction. I am also pretty lucky that I haven't needed very much in the way of pain medication. 

But I am having surgery next week. And there will be a chunk of time where I won't be able to verbally advocate for myself. And while knowledge of gluten has vastly improved in the past few years, there is still no legal requirement for prescription drugs to list the what the origin is of their binding starches. (Starch binders are good - they hold the medicine together so it can be a pill shape, I am all for it, I just want to know what it is: corn, wheat, other?) Come on FDA you can do it!

I have done my best to do a bunch of prep work:

-I made sure my medical records clearly stated I have celiac disease
-I told my surgeon, twice that I have celiac disease
-I verbally asked the surgeon's scheduling assistant to note it in my file... she gave me great advice to make sure I tell the nurses the day of surgery too
-I noted both "celiac disease" on my pre-op paperwork and "gluten allergy" under the "what medications are you allergic to" list (Yes this is fudging the medical reality, but I want them to check ALL medications and I have written before about the current constraints of the English language and I am comfortable about using anything in my toolkit to get my point across - do not gluten me)
-When I spoke to the nurse who reviews all pre-op paperwork I asked what type of medications are usually prescribed and how I could best say that anything given cannot have gluten in it 
-I got a medical bracelet

I was resistant to getting on at first, but then realized it would be a really good idea, especially after my first colonoscopy where the nurse tried to feed me cookies. 

I picked a green band - in honor of celiac disease awareness - and because it is the most obnoxious color. This is one time where I want everyone to pay attention... to my wrist. 




It reads:

CELIAC
NO GLUTEN
CHECK FOOD 
& MEDICATIONS

I guess it also might be time to upgrade my camera so I can take better photos, after all is said and done. 

What other advice do you have for navigating medical arenas gluten free?