What is normal?

I find it interesting the things we find acceptable.  For example, hauling around formula in a backpack or the thought that eating half a cookie was the craziest thing you’ve done in 3 months as far as PO intake.  (there is another one, using phrases like “PO intake” in a sentence – that’s normal, right?)  Or perhaps you don’t bat an eye at the thought of a dinner that can cost one to two thousand dollars dripping at 150ml/hr into a central line?

Yet it is OUR normal, and that’s ok, because we can still live, thrive and have fun with all these challenges and differences.  I remember watching a little guy pushing his IV pole, TPN swinging, all the while furiously pedaling a tricycle.  I sadly thought, “wow that is NOT something he should know how to do.”  Yet I’m told I shouldn’t be pushing mine from my wheelchair as I book down the hall to get some exercise, either!   To both of us, it’s normal.  It’s ok.  We’re doing it, we’re living, it’s fine, and I know I feel startled when somebody gives me a strange look.  I forget it’s not what is typical, because I feel so strongly that it is.  That doesn’t mean I like it, but it does mean I’m okay with it.  It’s so important to be at peace with yourself; and I rely heavily on my faith to find such a place.

GPACT, the UMDF, the Dysautonomia Connection, YouTube groups and so many more have made me FEEL like this is “normal” because of how many of you out there are living the life I am.  Three am fluid infusion take downs, 8pm TPN setups, multiple feed refills and meds a day, feeding tubes, ports, PICCs…on and on the list goes.  Thank you so much for that!

May your week be full of new adventures, even if you’re only dreaming of what you want to do next from bed!  Never give up that you will accomplish what is in your heart.

--About the Author:

Milly is a 20 year old with probable mito, GP, DTP, POTS and HMS who has ambitions to continue on to college.

Making the Most of It

There are days I think about all the things I have lost after getting sick. As you can imagine, thinking about it makes me madder than a dog on the wrong side of the door. It doesn’t matter what door, they just want to go through all closed door and well, it really doesn’t matter. What matters is that I do my best to think about what I still have to avoid getting upset, and work around the obstacles in my life to make the most out of everything. Like a lot of you I have more problems than my gastrointestinal tract’s fickleness and it adds to my limitations. One of them is muscle weakness that waxes and wanes a bit. Because of that one of the things I have lost was my favorite hobby, running. I love walking, but it gets boring and there is only so much time I can spend in the gym on an elliptical trainer. If I don’t like doing something I won’t do it, and using the excuse of having to pay for parking at the gym allows me to rationalize not going.

I bet you know exactly what I’m talking about. DTP can change your life dramatically. Dealing with the daily nausea, vomiting, bloating, pain and the weakness that goes along with malnutrition is tiring. It is easy to sit back and start to blend in with the couch. But, sitting around doing nothing is the easiest way to get weaker, and to just plain feel horrible all the time. The best thing we can do is find a way around our limitations and stay active. Even if it is just mentally active by doing things like reading, doing volunteer work out of your home, making crafts, etc. You’d be surprised what you can do, and how much help you can be to others even if you are homebound. You just have to figure out the best way to go about it so you can make the most out of your life by enriching it.

I found the best way to get myself out of the house this winter to try and get some exercise (which, by the way helps GI motility quite a bit not to mention helps fight the winter blues). Snowshoeing. I dawned my running tights (but wore jeans over them) for the first time in three years and gave snowshoeing a whirl. I gained several things from it—it was a new activity so it stimulated my mind, it helped me work on my leg strength, and helped get my gut moving. I might have been walking very slowly, a far cry from running, but I got to enjoy the fresh snow and -2 degree weather. Okay, enjoy isn’t the word for it. Survive is more like it.
 



I’ll leave you with a quote from a recent episode of the Biggest Loser.

“You get to feel sorry for yourself for about 30 more seconds. You are not that girl you used to be. This is who you are right now, and that’s what we have to work with.” –Bob Harper

Just because your life has changed dramatically doesn’t mean you can’t learn to make the most of it.

*About the author: Brittney Riley is G-PACT's public relations director, a patient, and a 4th year veterinary student at Iowa State University. To reach her please email her at rileyb(at)g-pact.org

"I'm Lost"

Rare Disease Day is held the last day of February every year as a way to increase awareness of rare diseases. A rare disease is a disease in which there are less than 200,000 patients in the United States diagnosed with the disorder. While gastroparesis and chronic intestinal pseudo-obstruction are not truly rare diseases, many of the disease processes that lead to DTP are. That is why G-PACT has partnered with the organizers of Rare Disease Day, and why I'm writing about Solidarity today.

This year's theme is "Alone we are rare, together we are strong." Standing alone our voice is weak, but banding together as a group our voice is much, much stronger. The challenges we face are many, including decreased access to a direct diagnosis, lack of information for patients and scientific knowledge for health professionals, lack of appropriate quality heath care, high cost of the treatments that do exist, inequalities in available treatment, and isolation.

Lilo and Stitch (Disney, 2002)

Having spent the last several weeks with a three year old the image that came to mind when I wrote about standing alone is that of Stitch. From Lilo and Stitch if you need a little help figuring out what I mean. Need more help? I found a picture of the scene I was seeing in my mind.

Stitch is an alien who was genetically engineered by a mad alien scientist named Jumba. Stitch ends up on the planet Earth after escaping. He's the only one of his kind and on a strange planet. And, as you can imagine at one point he feels completely isolated. Having read a book in Lilo's room he mimicked the little duckling's cry for help. I can't help but think patients like us with rare diseases feel the same way at times. We feel lost. Rare Disease Day is a way to help bring patients, doctors, and researchers together so we don't feel stuck on a tropical island void of large cities to destruct. Um, I mean, so we don't feel alone.

Hand Prints Across America is a way for patients like us to see we are not alone in our struggles. Visit the link and see how you can join others to stand together and not feel quite as lost.

*About the author: Brittney Riley is G-PACT's public relations director, a patient, and a 4th year veterinary student at Iowa State University. To reach her please email her at rileyb(at)g-pact.org

Only One Person Can Make You Happy

There were seven of us cooped up in a van on our way to Lugano when my brother in-law said something that I will always remember. Granted, I got a good laugh out of the conversation so it’ll help keep the memory etched in my mind. He was trying to talk to my 3.5 year old nephew about behaving in the van and enjoying the scenery after we all piled back in after stopping at rest stop. We were driving through the Swiss Alps so enjoying the scenery wasn’t hard, at least for the adults in the vehicile. The view out the window was priceless. Snow covered mountains and 800 year old villages in the valleys below passed by quickly, but were replaced by new ones just as fast. Anyway, Dan told Danny there was only one person who could make him happy. I knew what he meant, but Danny quipped back—“yeah, Mom!”

The idea that the only person who can make you happy is yourself isn’t new to me, and it I am guessing it isn’t new to you either. Deep down we all know that our mindset makes our experiences good or bad.  If you go into a new situation, focus on the positive aspect of the experience, chances are you will have a good time even if it things don’t turn out perfectly. Much like a 3.5 hour car ride through the Alps in a small van with five adults, a toddler, a preschooler and two dogs. It is cramped, loud, and rather nerve wracking but the view made it all worth it. That, and my nephew’s way of thinking about things.

Living with GP, CIP, or other gastrointestinal dysmotility disorders sucks. But, that doesn’t mean your outlook has too. Prior to leaving for Switzerland I ordered a new bumper sticker for my car, one that matched my scientific mind and my personality. It is a play off of the old saying “When life hands you lemons, make lemonade.”  Sometimes you need a little reminder, and in 2012 that sticker is going to be mine.

“When life hands you mold, make penicillin”