Posted: May 23, 2012 in Uncategorized
I wrote the following email to a friend wanting a “quick update” and for time sake, I’m just including it here! Monday was a GREAT day! Read on to see why…and what up next! 
Written Monday, May 21st…

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
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
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

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!). 

—————– End of Email ————–
Later edit – At this point I am scheduled for treatment on Tuesday and it may just be one BIG treatment in the afternoon. They are planning to do another rescan late morning and treatment starting around 12:30. 
I just can’t quit smiling. Life is so fast. There are so many people, events, places and things that desire our attention…and truth is, they all can’t have it. As I continue down my road of this second chance of life, I’m realizing how powerful our minds are in our everyday contentment. The more I dig into Gods Word, the more I’m reminded that I am HIS, I am LOVED, I am FORGIVEN, I was bought with a PRICE, my life is NOT a mistake, I am NOT going to be on this earth forever, God has a PLAN a HOPE and a PURPOSE for my life….filling my mind with these Truths on a daily basis keeps me going and keeps me focused. Sometimes we trip and fall because our mind is focused on the wrong things…so, I have to ask – where is your mind? 
The Truth, His Truth really does set you free! You are not defined by your sickness, by your strength, by your kids, by your job, by your marriage…by your past regrets, your mistakes, your accomplishments…in reality, this LIFE of yours doesn’t even define you because it never was YOUR life anyway…you got life from the Creator of life…how much more abundant, unpredictable, amazing…how much more complete would your life be if we lived in the daily closeness of the very God that made us from the start? Huge question to chew on…. 
Have a great week friends…
You are bought “as-is” now go have a life being (a continual daily process) used as HIS! 
  1. Anonymous says:

    Praise God and hallelujah! you must be floating in the clouds right now!!! Am sooooo happy for you,Bethany.

    linda Crews

  2. Anonymous says:

    Bethany, I know I am behind on my reading,but I want you to know I am thankful for your words of encouragement. For the past three weeks I have been having more difficulties in my health than I even would like to admit,seeming getting worse as it goes on but yesterday & today it has gotten so bad Jacob has had to stay home from work with me. After all I have been thru last year with my health & back surgery I was thinking life would start calming down & I was finally back where my heart is…working with children (including being able to Bbsit outside the house for extra $ to pay bills & feel helpful to Jacob in that manner) then these past few days got bad. I could barely walk to the bathroom on my own & sometimes (in fact majority of the time even in the middle of the night I had to have Jacob walk with me & keep holding me up so I wouldn't collapse.) I had to have him call about 1.5 hrs before I was suppose to be at a bbsitting job to cancel because before then even tho I knew in my body differently I could make it thru & I could drive & be fine but then I got worse & gave in for canceling & I lost the job and the mom blamed me for being sick & missing a meeting & said basically she couldn't risk her future because of me & I wasn't going to be bbsitting for them anymore! I don't know why God is choosing to do this to me but thank you for your words of encouragement that I am somebody still in Christ & He has been there!
    If you would like to email me back or even txt that would be great but if you don't I understand also cause you have a lot going on there! (by the way my dream vacation is to go to FL).
    God Bless,
    Lisa Albers

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