The worst part about having a chronic illness is that the cycle of adjustment to your “new” life. One day, I can run 3 miles and the next I can’t bend my fingers. I can’t get past grieving the life that I have every few days if I still experience it.
Chronic Illness Problems: 12/09/2012
- Running your hand through your hair only to have it fall out in your hand.
Nominate & Endorse Your Fave Health Activists: Inspire & Be Inspired
December 31st is the last day you can nominate your favourite health advocates for the WegoHealth Health Activist Awards!
- Is there someone whose work inspires you?
- Is there a health activist that makes you feel less alone, has taught you something new, or has helped you pull through?
- Have you just been diagnosed and found help in a health activist’s blog?
- Is here a health activist that always gives you great advice or support?
- Is there a health blogger who works hard that deserves recognition?
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!
One Year Mark: Rod Removal Surgery 09/26
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 Awareness Week is Coming! September 10-16, 2012
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 :)
Update: Remicade, Cystic Acne, Enlarged Spleen, Kineret
- 9-2 infusion went smoothly. Increased dosage of Remicade; no prednisone since it was making me more miserable and not doing enough for me anyway. Was in quite a bit of pain, BP was weird today, but got in a few hours of sleep thanks to the Benadryl— always a positive.
- Broke out with more cystic acne after the infusion despite no steroids. After doing some research, there have been studies citing cystic acne as a less common side effect of Remicade. For those of you whose doctors are not aware of those studies or insist Remicade is not causing it, I’ll post those links later.
- Enlarged spleen, not just inflammation around the spleen. It was only a matter of time, but annoying since it is so painful and keeps me from walking very far.
- Liver enzyme issues are due to Remicade, not pain medication.
- Discontinuing Remicade after the next infusion since it’s just not working (unless it randomly starts making a huge difference within the next month) and switching to daily injections of Kineret.
- The good being that this medication is something other than an Anti-TNF; the bad being the daily injecting bit. But autoimmune is one big game of trade offs and trial and error, so fingers crossed that Kineret will be the right medication.
- Genetic mutation associated with a condition I will write about later, but not directly correlated with clinical disease because the mutation is so rare. Like I’ve said before, I am the queen of rare. No conclusions as to what this means, but validation is great to have.
- 10 points for Dr. S for being thorough and listening (not just hearing) to my input. I always leave that office feeling reassured with whatever plan has been put together. I’m not afraid to ask about a medication or test, and never feel shamed or judged for having an opinion.
Still in my post-infusion haze and plan on sleeping for as long as possible. Muscle relaxers and pain meds down, dog cuddled up next to me, and don’t plan on blogging for a day or two, so more queued posts ahead :)
The statement “the only disability in life is a bad attitude” puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It’s victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get stuffed.