I love Peter's experience of walking on the roaring sea with Jesus. But the thing is, Peter's story is often misunderstood. Do you have a step you need to take?
Listen to this message I gave at a women's retreat to gain the fresh perspective you need to see Jesus in a new way! My FREE gift to you!
I got a call at 8:20 this morning from Dr A saying I could Skype with a few
doctors on the national CIDP/GBS Foundation IF I could get there at 9…I
dropped both kids off and didn’t kill anyone…by the grace of God I was
there by 9:05, just in time! THIS WAS THE MOST COMFORTABLE MEETING I HAVE
EVER BEEN AT!!!! I met with Dr A, 2 drs from cardio, my neuro team and 2
reps from the cancer center (I don’t get why they were there now that I
think about it…). On Skype was the team from Atlanta and the CIDP/GBS
foundation director (going BLANK on his name right now). Literally, I’m
sitting amongst this circle of doctors, both in person and on screen…and I
was comfortable! Weird…of course. To me, it was just another meeting.
Dr. A retold my story (with assistance from neuro, cardio and Atlanta) and I
just wish I could have taped it. It was literally like I was a bug on the
wall…they were talking ABOUT me but not TO me…and most of it went
something like, “In normal cases we would do this…but in Bethany’s unique
situation…” I just smiled. I watched the awe struck gaze of the guy from
the Foundation…he just seemed…hopeful. He later asked me to stand, walk
around, do a few exercises…I remember looking back at him and he had the
same look on his face that many did when I started walking after my first set of treatments. He shared later that given my test results, I shouldn’t be walking
without assistance. He used the phrase, “Young lady, you defeated all of the
odds” and Dr A added, “Heck, she defeated all the evens too!” Everyone
laughed…I cracked up…I think Dr. A is finally getting it.
Long story short – my test last week revealed I have lost permanent feeling
in the majority of both feet (which I knew…just didn’t realize it was
permanent) and the longer the CIDP goes untreated, the worse permanent
damage occurs. I should not have my balance. I should not be walking
anywhere near as well as I am…ALL of the doctors were just silenced by
this today…it was a God moment. You sit there and see the numbers and
facts…and then you look at what is…and go, “Okay, the test results were
accurate…so the patient is a twin.” A few of the doctors even referred to
God…THE DRS IN ATLANTA CLOSED THE MEETING IN PRAYER!!!!!! How cool is
that??!! Dr A even stayed! I couldn’t quit smiling…I still can’t!!!
Anyway, the guys from the Foundation have a type of IVIG that is designed
for long-term use, without the risk of brain swelling (a side-effect of my
current type that is an issue with my low spinal fluid issues). Brain
swelling adds a greater risk for future tumor formation as well as creates
the perfect environment for cancerous tumors to spread. This new type is
just as invasive (if not more) without the chemo, but with steroids and
protein that help recover muscle function as well as help with the CIDP
restriction of damaged nerves in the brain. In short sense, this type is
more of a long-term solution which has no side-effects to brain tumor
patients. AND…pending on how well the first treatments go, I could get to
the point where I can just get a shot, instead of an IVIG treatment! OH HOW
GREAT THAT WOULD BE!!!!
The CIDP Foundation guy (Roger) did mention that he only knew of one other
man that had both CIDP and one brain tumor…and he passed away on the
operating table. He was so glad Dr A went the direction that he did and
decided NOT to operate. After telling him about my pacemaker hospital stay, Roger
was even more appreciative. He was such a great encouragement reminding me
that my life is something special. That’s really how I feel right now…this
is my second chance at life…what will I do with it?
Not sure when the first round of treatment will be in. I do know I go more
than 2 days in a row and the feeling is similar to chemo…BUT NO HAIR
LOSS!!!! YAY!!!!! My hair is FINALLY coming back…I literally cried when
they mentioned that! I’ll take feeling sick…just let me keep my fuzzy head
It was determined that my pacemaker is causing unnecessary pain, thus has
overworked its standards. I will need to go through the hell of another
procedure again…sometime in the future…but not until this CIDP can be
effectively controlled. The risk is just too great right now…I’m good with
waiting! Plus the cardio team wants to see what effect the new treatment has on the pacemaker (it has the capability of removing the cardio issues I’ve been having too!).
Hello and welcome to Step Out And Thrive Ministries! My name is Bethany Boring and I am proud to be called a child of God before any other title or role. I am a mom to 3 amazing boys. I enjoy writing for this Step Out And Thrive community and walking with you as we venture through the ups and downs of life together. I am an ICF trained Certified Professional Christian Life Coach (Christian Coach Institute Graduate), Motivational and Inspirational Speaker, mentor, Certified Human Behavioral Consultant (DISC Personality) and an author. As always - dare to do more than just survive, step out and thrive!