The Oley Foundation was founded in 1983 by Lyn Howard, MD and her patient, Clarence “Oley” Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients.
This afternoon, I received a email say that I was nominated for the Oley Innovator/ Advocator award 🥇 The award is for TPN consumers who lead by example to promote innovation in nutrition therapy, or by advocating for fellow homePEN consumers.
I'm just filled with excitement and happy to nominated. I think God was looking out for me because had I been listed for transplant now I wouldn't be able to attend. Everything has a silver lining.
When I first became very sick and was unable to keep food down the doctors placed me on enteral nutrition (tube-feed). I was so happy to get out of the hospital after spending over a month inpatient. I remember when the Home Nutrition company arrived at my house – I was horrified with the medical backpack they provided me with. Black, dull, boyish, unflattering and unstylish are only a few words that could describe this awful backpack.
You may think a backpack is trivial or unimportant; however, it really impacted my mentality. I consider myself a girly-girl and fashion-forward and this standardized medical-grade backpack only made me feel worse
about my own health problems. I just wanted to feel confident with my tubes and my backpack. I began myself and looked all over the internet for other backpacks. After some online investigation, I was left unsatisfied with what the market had to offer me. The backpacks on the internet were just as unfeminine and unstylish, as well as being outrageously expensive.
Due to the fact that I found nothing that suited my needs in the market, I decided to create my own backpack. After some trial and error, I created a backpack that I considered perfect for TPN (parenteral nutrition) and tube-feeds (enteral nutrition). Due to being chronically ill, I am on quite a few support groups on Facebook. I posted the backpack I created for my tube feed and now TPN. Many mutual friends reached out to me, asking for similar backpacks. After a few orders, the company organically formed through word of mouth and satisfied customers. Thus, Chronically Fit Backpacks was born.
Customers claim that these Chronically Fit Backpacks give them confidence, hope and happiness. One Chronically Fit customer stated, “I’m proud to go out in public with my tube feeds and don’t feel ashamed or like I have to hide it. I told my mom I used to disconnect my tube feed before getting my kids from the bus stop, because I didn’t want my friends/neighbors to see me with it. Now, I’m actually eager to pick the kids up from the bus stop, because I am proud of this tube that’s keeping me alive.”
Being chronically ill is difficult. We do not need to add gas to the fire with unfashionable medical gear. I strive to help women struggling with lack of confidence due to their various medical conditions. I would like to transparently educate other people that sick doesn’t mean unfashionable.
Do you really what to know what a Chronically Fit Backpack can do for you?
Well, check out a testimony that one Chronically Fit warrior, Kim, shared with us...
Kim said, " I absolutely love it!! I went to my doctors office, and the PA complimented me on it. I feel so much better about having a tube now. Amazing how a backpack makes that much of a difference. This is also much more comfortable. Now I'm proud to go out in public with my tube feeds and don't feel ashamed or like I have to hide it. I told my mom, I used to disconnect my tube feed before getting my kids from the bus stop, because I didn't want my friends/neighbors to see me with it. Now, I'm actually eager to pick the kids up from the bus stop, because I am proud of this tube that's keeping me alive."
"I love this backpack more and more every minute! Thank you for this!"
Thanks for sharing Kim! Chronically Fit Backpacks love their customers. <3
I wrote an article about a week ago and it was picked up by The Mighty!
The Mighty is an website geared toward people with chronic illness and their families.
To read the article, check out the link below.
A picture only represents a moment in time. It can show physical appearances and possibly some background information, such as location, friends, pets, and hobbies. On the outside a person can look healthy, beautiful and may seem like they have it all together. However, if you look into their eyes and their smile, there is a very different story.
What people cannot see in a photo is that I have fought and almost lost my life several time. They will not see the tubes that hang out both my chest and abdomen. They will not see the scar that goes from my breastbone to pelvis. They will not see that I no longer have a colon and that I was forced to get an osteotomy. They will not see the pain I am going though. They will not see the fear I face everyday. They will not see God’s grace in my heart and they definitely will not see the 30 times a day that I throw up.
Sometimes when people ask how I am doing, I say generic things such as, “I’m hanging in there,” or, “Just taking it a day at a time.” They think that outer beauty is all that matters, but I am so much more than my appearance. I am more then just the girl smiling in the pictures. Pain or not, we all have a story that cannot be depicted by a picture.
If you see someone smiling in a photo you would think that the person is happy. However, smiling when your chronically ill is more of a form of acting. We have been trained to say, “I’m doing great,” or, “fine,” because heaven forbid you make someone uncomfortable by telling them how you really feel.
What people also do not know is that at times we have “good days” and get out of the house. When that happens people start questioning your illness, but again they don’t know how hard it was to even get up and leave the house.
So, yes I get up every day like everyone else. Only in my case, I fatigue much easier that my non-chronically ill friends. I fight everyday for my health. I fight everyday to smile. I fight everyday to stay positive. I’m a fighter and that is just something that you will never be able to portray in a picture.
Chronically Fit Backpacks has been published in Green and Lake Living Magazine.
A local publisher asked if I, Diana Donnarumma, would be willing to share my story and give a bit of background information on how Chronically Fit Backpacks came to be.
Thank you for all for your support, prayers and best wishes. I'm just happy that I can help others that may be isolated in their homes and quite ill on artificial nutrition. This business has been exciting and fast paced, but I wouldn't want it any other way! Sending love to my customers (Chronically Fit Warriors) all around the world.
If you have the "case of the Mondays" maybe this will give you some motivation. ❤️️
Rainbows come out after a storm.
There is hope and I hope you all hang in there. Find the beauty in life. Laugh like a hyena. Dance like nobody is watching. Live life to the fullest.
Even if you are having the worst day ever, don't good to bed with out saying about one good thing that happened that day
Chronically Fit appreciates your patience and is hoping to put products back on the market very soon. We are looking at various vendors so that more people can join the #chronicallyfit movement and like facebook 'LIKE PAGE' for the relaunch!
Here it is!!!
Remember not to say these things to someone with a chronic illness 😷
The worst part about a chronic illness is isolation. When you become sick your whole world changes. So remember even if you don't know what to say, keep in contact. Even a simple text message is better than anything.
Love you all ❤️
Inspired by the Chronically Fit Movement. Intestinal Transplant Survivor. Chronic Illness Fighter. Rescue Dog Momma. Follower of Christ. University of Miami Graduate. Shopping lover.