Winning with a "B". My road to recovery 18months

First and fore most Id like to invite you to simply "like" a page on Facebook:

https://www.facebook.com/Hug.A.Cushie


A friend of mine is making a documentary about Cushings.  Not only to share the stories of many lives touched by Cushings but to also raise awareness.  Cushings, is not as rare as the medical community makes it out to be.  It is just not researched enough.  When your health is beaten down and you have no way to defend it except for fighting back--by looking---researching you become PASSIONATE about your diagnosis when you finally receive it and want to help others from going years un-diagnosed.  Help my friend Karen raise awareness.  Help ME raise awareness.
 Like the page!


"The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life's strongest storms"

This quote came to me on a card from my mama just a few months in to this long road of recovery.

On June 11th 2014 I will be 18months post surgery to remove a tumor at the base of my brain.  This tumor caused me to have Cyclical Cushings and go un-diagnosed for over 15 years.

Boy, it's been quite a ride.

When I was about 6/7 months out from surgery I completely weaned off of synthetic cortisol (hydro) and all thou it was ok at first...I experienced terrible with drawls (nausea, shakes, headache/migraine, sweats, and other issues I won't go into--but they kept me up all night glued to the bathroom). I had to go back on the full dose and wean down again.

At 6months post op we learned I was deficient in Growth Hormone.
Growth Hormone is one of the first hormones to become out of balance after surgery.   So although an unpleasant surprise it wasn't completely unexpected.

I went from The beginning of June 2013 to that December fighting for the prescription which will help sustain and drastically improve my quality of life.  I finally received the prescription from the manufactures compassionate use program on December 3rd, my 28th birthday!  To this day they still continue to battle insurance issues for me!  One of which being the fact that my RX is prescribed by an out of network Dr. My HMO thinks it isn't necessary...

Let me tell Y-O-U :

I spent from the time pain began @ 14 (other symptoms as early as 12) going to in-network doctors exhausting every specialists, therapist and homeopathic resource I could find to LISTEN to look at me as a WHOLE picture and not just at different pieces of me--  I'm beyond in-network.  I'm beyond DeForest WI, Madison WI, Milwaukee,WI I'm beyond Little Chute and Appleton WI.  I've exhausted my IN NETWORK resources.  I am RARE.  I EXIST.

I am proud to say that at almost 18 months out I am completely off of hydro on a regular basis.  When I am going to be doing more, or have been ill or spending lots of time in the heat I take some otherwise things spin out of control fast.  I've learned that although my body was poisoned for so long by excess cortisol--that since my body is still only producing very low amounts of cortisol...that taking extra so my body doesn't go into adrenal crisis is what's HEALTHY for me and my body.  It's hard at first taking what made me so sick all these years.  As you know tho, hormones are a crazy thing and without balance I was very sick.  I'm still not 100% better.... I like to think of my self as a "work in progress"   Enjoying myself--where ever I'm at--every step of the way.

Balancing my thyroid and GH have presented issues as these drugs actually have been known to decrease cortisol levels.  So--finding a balance when your already tittering on a very fine line is hard.  Not impossible...but challenging.

 I won't stop until I regain my health back...I'm on my way.  I'm so happy to be here.  I'm happy to report that I can do more and "pay less" for it later.  One thing Cyclical Cushings has caused is lots of damage to my nerves and muscles which causes a lot of pain in my legs and feet.  I'm hopeful to be getting into a specialist and try a more innovative approach to controlling this pain!  (I'll keep you updated.)

Of course there were lots of bumps along the way...this past year...This past winter was really rough as with lower cortisol my body is more susceptible to getting sick and staying sick...I had strep 3 times within a 4.5 month period and it's really been hell recovering from the last time I had it in April of this year.

I'm slowly getting back at doing things I ENJOY.  To name a few:

I've been playing whiffle ball with the kids, going on walks, getting out and about more.  I've been on a few bike rides since the weather has warmed up.  I got out my sewing machine yesterday for the first time in well...FOREVER.  I'm learning it's ok to do for me.  I'm doing everything I can...giving recovery my ALL.

I'll never settle for anything less.  I know that my "healthy" May not be what someone else's healthy is...and I'm ok with that.  I deserve to be as healthy as my body can be.  I've lost inches off my stomach, I've dropped some weight, swelling has gone down...my pain is mostly in just my lower back, legs and feet now where as before it was everywhere!

It's coming.  It's slowly coming...I can FEEL it.

Thank you family&friends who along the way have believed IN me, it's not over but I'm doing it. One step at a time a time, some days minute by minute...



       “When the world says give up, Hope whispers…Try it one more time.”
                                                         Never giving up~ Meagan