Chronic Illness Problems: 12/09/2012
- Running your hand through your hair only to have it fall out in your hand.
December 31st is the last day you can nominate your favourite health advocates for the WegoHealth Health Activist Awards!
If you answered yes to any of these, please nominate the person for the WegoHealth Awards here and endorse them on their (and/or your) blog widgets (psst. Chronic Curve has one on the sidebar!)
Pay it forward!
Today marks one year since I went for my rod removal surgery. It has been a whirlwind of a year! Full of extreme highs and all time lows, painful losses and incredible gains. I do have a post I’d like to share about the experience, but it’s not quite where I’d like it to be so I’ll probably have it up later this week.
I’d like to share some photos that I have not posted previously. It took quite a few months before I could stomach the photos, so it feels appropriate that I post them on the one year mark.
Most importantly, I have to give thanks where it’s due:
Dr. J and his surgical team are more than talented surgeons: they are true patient advocates in every sense of the word. No other physician has gone out of their way to help me in the way that he has, whether my problem had to do with my spine or my autoimmune issues. I know I can always pick up the phone and ask for his professional opinion.
The nurses, child life specialists, therapists, therapy dog handlers, and the rest of the staff at Joe DiMaggio Children’s Hospital are just incredible, incredible people. They understood the complex issues that came with being a chronically ill patient and made me feel heard, respected, and safe at all times. The pre-op nurses were amazing, kept me calm and worked hard to make the IV process less painful on my swollen RA-afflicted hands. The nurses on the peds floor are truly miracle workers who went out of their way for me multiple times to get me a medication and despite long hours and hard work, always came to help me with a smile. Dr. K was the first person to really listen to me and help me when my pain wasn’t being adequately controlled; she made sure I found relief and managed both my autoimmune-related pain and the excruciatingly painful recovery safely and effectively.
I cannot say enough kind things about Joe DiMaggio Children’s and the staff working there. This was not my first surgery by any means, but it was the first time I received such amazing post-op care. “Thank you” is just not enough.
In recovery right after the procedure.
This was during my 4-day ICU stay, though I couldn’t tell you which day this was taken. You can see how swollen my stomach was. I was giving a thumbs up and smiling. Obviously trying to stay positive! I felt like a beached whale meets a beach ball up until January. That disgusting brown stuff is coming out of my stomach from my NG tube.
Rest of the photos are under a cut because they are a little nasty.
National Invisible Chronic Illness Week is here! It’s time to spread the word and participate in this event.
I’ll be blogging each day with a different topic relevant to invisible illness and what you can do you make positive changes to help others with these diseases in our society.
It’s time to put a spotlight on our invisible illnesses. No more hiding.
I’ll be kicking off NICIAW with their 30 Things About My Invisible Illness You May Not Know survey and I sure hope that you join me!
Reblog and spread the word! Especially my fellow Autoimmune Arthritis mates.
Click the button on my sidebar to learn more!
In case you don’t know what this means: I finally applied for a disability/mobility service dog. It’s about time considering the trouble I have getting around, bending, carrying things, opening doors/cabinets, keeping people from bumping into me, etc.
Thanks to the support from friends and family, I’m ready to pursue this seriously and I’m so excited to start this process.
Details to come soon :)
The first few weeks on campus with a new chronic illness (or new school) can be seriously daunting. It’s hard to keep track of all the new places, people, and rules, so here’s a quick cheat sheet to your first few weeks on campus and the most important things to accomplish:
1. Things to learn the location of: your disability center, health
clinic, pharmacy (on campus or off), bus stops if you are using
provided transportation, your class buildings, elevators, and ramps if
you’re using a wheelchair or avoiding stairs, your advisor’s
office/building, dining halls/options.
For those of you just heading off to school as freshmen, take a deep breath and cross something off your to-do list each day— you’re going to be just fine.