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|Newsletters: Never Say Never|
Never Say Never
I originally heard about the Oley Foundation from a friend I met at the Mayo Clinic in 1978 named Daryl. Since that time my life has gone through a lot of ups and downs, but I know I can always depend on the newsletter to let me know that there are other people who are going through the same things. My saying has always been, “sympathy is fine, but empathy is better.”
Daryl was the first person I had ever met with pseudo-obstruction and it meant more to me than I could ever explain. We remained friends for years, and he and his mother came to visit my family up in British Columbia, Canada. Unfortunately, Daryl didn’t survive, but his mother and I still stay in contact. She is presently writing a book outlining the life of Daryl and his brother, who also passed away. It is a kind of catharsis for her, and I hope she will be able to share it with the many people who have experienced a similar situation.
I am now 34 years old and will be celebrating 20 years on HPN next year. I not only finished high school on time, but managed to go to college and then a university, where I graduated with a degree in Psychology. I just retired from coaching gymnastics for the last 15 years as my full time job is keeping me very busy. Oddly enough I work for a major medical supply company here in Canada and my home patient representatives are in the same office as me. Having them here has it’s advantages. Everybody I work with knows I am a homePEN patient and I have given several demonstrations for the office staff. I was also invited out to Ontario to do a presentation for the plant staff that manufactures the IV bags. It was so nice to be able to share with these people what the end result of their good work was.
I just celebrated my second wedding anniversary and my husband and I are doing very well. We have been through a lot in the four years since we met. Even though I am still a stubborn, independent, demanding individual, he is still with me and we are looking forward to as many years as we can have together. Not much stops us from planning to do what we want to. For our honeymoon we drove up to Alaska. We put on almost 5000 kilometers in two weeks and saw everything there was to see. We had no problems along the way. All my supplies were with me, and we simply rotated freezer packs into the cooler. I would stay hooked up if Eric got up early to start driving. When I finished, he would stop, let me unhook and them jump into the truck with him. It was an unbelievable trip and we hope to do it again.
I travel a lot in my work and have gotten to be a pro at making something out of nothing. My motto for traveling is “necessity is the mother of invention.” As I do not use a pump, I very rarely travel with an IV pole. I have hung belts from curtain rods, and then hangers from the belts. I have put chairs on spare beds and then hung the hanger from the back of the chair. Anything that will work! I have been able to pack almost a weeks worth of supplies into a wardrobe so I wouldn’t have to carry anything extra.
People out there should know - especially parents of children going through this - life can be very trying at times. Sometimes you don’t feel that you can survive this. But it can get better, and you may be able to see your child grow up and reach milestones that everyone said they would never see.
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