 |
Hi all, I hope everyone has been
having a wonderful summer and staying cool! I can't remember the summer being
so hot so early since before I my struggles with Short Bowel and dehydration
began. We started the summer with an extended vacation to Orlando
and Gulf Shores, AL for work and pleasure. Spending time with family in both
places was always wonderful for me. Mike had a conference in Orlando so me and
2 of our boys tagged along before the 6th annual family vacation in Gulf
Shores. I must say it was hot in both places so I made sure I stayed hydrated
by infusing regularly as well as drinking my ORS daily. My days of basking in
the sun all day aren't what they used to be when you have to worry about
staying hydrated, medicines that cause cancer as well as sun-damage to
your skin. Nothing can compare to relaxing at a gorgeous beach, watching
Blue Angels practice overhead or playing with my 2 year old niece (and older
nieces and nephews too). Relaxing and spending time with the important
people in my life are what keep me grounded and thankful.
I had about a week recovery before
heading to Memphis for the annual Oley Conference with ThriveRx at the
end of June. It had been several years since the last time I attended one so it
was great to catch up with old friends and meet new consumers and caregivers.
Per their website, "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." Their conferences are packed with Researchers,
Physicians, Registered Dietitians, consumers and caregiver who offer incite in
what it's like to live with nutrition support and the best ways to treat it. My
job duties this year included manning the Hydration Station with Maria
Karimbakas RD & Kristie Brewton RN to teach nutritionally challenged people
the signs and symptoms of dehydration and to sample 2 different types of ORS.
This year we had the standard G2 with salt and Trioral ORS with different flavors
each day. The WHO
recipe for G2 is 1/2 tsp salt per quart of fluid. You can mix
Trioral with 1L of water and flavor to you preference. Since beginning
hydration therapy, I have always used ORS from Jianas Brothers mixed
with Propel water which I freeze to make it more palatable and longer-lasting
on hot days. I could always taste a bit of salt with the Jianas product but I
am now a fan of the Trioral packets.
There was less salt taste with Trioral even when I freeze it. I am not a huge
fan of Gatorade or G2 but will drink it if I have too and I prefer my Hamilton
water over anything if I could drink it straight. Drinking plain water is not
the best thing for my SBS and hydration issues so I have to supplement it with
ORS. I brought several sample packets of the Trioral home and will plan on
buying them in the future when my supply of them and the Jianas products runs
out. Since I am a regular consumer of ORS, my job was to have patients and
caregivers try the products to see which one they preferred and if they could
taste the salt (for those with regular guts). It was surprising to see how many
caregivers also tasted less salt in the Trioral product.
ThriveRx also hosted an event for
our consumers at the Memphis Redbirds ballgame Sunday afternoon where I
re-connected with consumers and met many caregivers and patients with whom I
have spoken with on the phone. In my current position with ThriveRx, I work
with the Reimbursement department and consumers on insurance issues. I no
longer speak with regular consumers but many different ones over the course of
the month so it was nice to put a face to name.
The Oley Conference is always
informative and enjoyable. I am looking forward to their Regional Conference on
September 15th in Columbus, Ohio.They are also hosting one in Boston in
October. It's always a pleasure to connect with others just like me who are
Living, Loving and Laughing through their nutritional issues.
Love to all,
Michelle
PS: I've tried to add links to ORS
recipes, Trioral, Jianas Brothers and Oley regional conferences so if they
don't work let me know.
 |
| Stephanie, Ann, Redbird and me |
 |
| Me & Kristie |
 |
| The Advocate Staff |
