Monday, October 31, 2016

APPROVED, Finally!!!


Jeff came home from work on a HOT August afternoon
and grabbed the mail like he always does. 

I'm sitting at the table out by the pool on our gorgeous deck. 
He goes inside, 
then comes out with a letter in his hand. 
When I saw the size of the envelope, 
I instantly {Hoped} knew exactly what it was. 
And when he handed it to me 
I just froze...
I let it sit a few minutes before opening it...

Let me back up for a minute.
I stalk my mailman.
When I hear him driving down our street
I almost ALWAYS meet him at the curb 
...and he knows why
He saw me outside by the pool, 
we both waived. 
But this time he did something unusual, 
he honked when he put the mail in the mailbox...  
It was his way of telling me he just delivered 
what I had been waiting for... 
Knowing Jeff would be pulling in at any moment, 
I just waited for him to get it.

I WAS SCARED,
I KNEW IT WAS HERE

So there I sit with the letter in front of me.
Hesitant to open it BUT dying to know the outcome...

DEEP BREATH 

Jeff, in the meantime, has walked away 
giving me time to read it. 
He could tell when he handed it to me that I was stunned...
I open it...
 I don't even bother to pull the entire letter out. 
I just look at the top of page 2. 
BECAUSE I KNOW  
exactly where the decision is...

I screamed, "YES" 
so loud my neighbor's could hear it!!!
...and then I started to cry.
Jeff knew right then and there that I was approved, 
he came over and hugged me. 
I just sobbed in his arms for about 15 minutes.

FINALLY...
after nearly a 6 year battle.

I have been approved for Social Security Disability...
It only took 3 lawyers, 2 court dates and going to 
FEDERAL COURT 
for a "Fully Favorable" decision on Aug 26, 2016.
AND...
It is approved all the way back to 2011. 
It will be one hell of a payday when we receive that check.
THAT CHECK
has blood, sweat, tears
and nearly a divorce written all over it.
That check 
is something that Jeff and I deserve after all that we've been through with these disease's. 

I CAN FINALLY EXHALE...



Saturday, January 18, 2014

~Denied

~ Social Security Disability Income


On January 13th I received my SSDI decision in the mail.

DENIED...

AGAIN...

The next step is to either file a claim with the federal courts or refile (start the process all over again, but with a November 2012 filing date versus a February 2011 start date {original} ). 

Right now I'm thinking that refilling is my best bet, as I was denied benefits again because they did not take into consideration all the problems I was left with after my Oct. 2011 brain surgery.
I have several issues from that surgery alone. Not to mention the 7 previous brain surgeries prior to Oct. 2011. 16 surgeries in all. 8 brain & 8 spine &/or abdominal surgeries. I am seeing several new Dr's now, with God only knows how many NEW Dx's I have. 
When I filed in Feb. 2011 it was everything up to that point. After February, I had several more "FAILED" surgeries and a devastating October 2011 surgery that left me and my family in a very difficult time.

So since October 2011 several things have happened with my health. My new brain shunt is for the most part "stable" it's all the problems due to all the surgeries, medications and psychological issues that left me with what is killing me now. 

{I still suffer from headaches daily, don't get me wrong. Especially when there's a weather front moving in. But it's something that I have learned to deal with as best as I can, even if it means a day in bed just to deal with the pain} 

I just don't want to keep messing around with the settings like my previous Neurosurgeon did and end up with overdrawn ventricles again.

One of the hardest things I've had to over come is losing my family and friends. I've become so isolated, due to my health and the fact that people just don't "believe" what I'm going through is REAL because on the outside I look like a normal person, but it's a war going on inside my body and mind...

~All Day

~Every Day



Wednesday, September 4, 2013

~ The most difficult post I’ve written



...exhale...
I keep hearing the message that one of the most helpful things any of us can do for others is to show how we have healed ourselves from personal trauma and to allow our stories to become medicine for others.
What lies beneath is not so easy. Perhaps sharing my deepest story, as difficult as it is to put on the Internet, will help others. (I hope so because the vulnerability is nearly unbearable. I’ve been at odds with myself for days.)
Do you know it is estimated that 1 in 6 American women has been sexually assaulted (attempted, complete rape or incest) during her life?
It is being written by one.
The chance that an incest/rape victim is reading this blog post is high.
 Like me I have searched the Internet for help & or answers. Maybe coming across my blog post will empower another woman to get the help she needs and FINALLY let that family skeleton out of the closet. 
My story is a bit more complicated 
because I was around 4 years old when the incest started. 
It was forceful and wrong. 
And the more I developed into a young woman~ 
the worse it got.
This is no secret to my parents, however sharing the 
family skeleton on the Internet is risky. 
I have chosen to share it to help people understand that I’ve experienced dark personal trauma and I’ve been healing through therapy.
Read about it here: ~ Believing ~ 

I want anyone who needs inspiration to know that peace can be attained. 
It’s also a final healing step for me to come out of the closet 
where that skeleton lurks.
I've binged to suffocate my feelings and did nothing to alleviate the shame of my eating behavior my whole life. But now it is time to set all of that free. 
To become the person I want to be. 
That my husband and daughter deserve me to be.
It took me a long time to sort through what had happened with my abusers, to organize my emotional life, to seek help and to heal. I was numb for a long time, was very angry for a large chunk of my adulthood and finally arrived at acceptance... but not forgiveness...
Where my real struggle lied was in forgiving my parents who were supposed to protect me~ the youngest child, a daughter, with three much older brothers. Then  rescue, comfort and help repair me after I told….
or so I thought. 
Professional therapy probably would have been a good start. 
So what was done? Nothing.
 After the incest 
I endured decades of confusion, 
fear, anger, self-hatred and deep shame.
Have I healed?
At age 41, I can confidently say that I have done a lot of healing, connecting with people who accept me “as is” and not so much forgiving. 
I will not forgive those 
who do not acknowledge that what they've done is wrong 
and have ruined not only my life but "MY" immediate family's as well. 
Writing publicly about the incest is a final piece of my healing process. Feeling reluctant to expose the family secret has kept me feeling ashamed of myself. Even though I am NOT the one who should be ashamed... Worrying about others’ feelings more than my own has kept me quiet. I’m ready to disempower the shame, speak my truth and let others feel how they choose to feel about it. 

It's MY happiness & MY family that deserve to be set free.

I understand that I am not my story, however my story is a launching pad for telling the bigger story of my mental illness. 
Depression, Anxiety & Dissociative Fugue 
are all a part of the after effects of years of sexual abuse done upon to me. Not to mention by more than one family member. 
Though I’m grateful for the life lessons that have blessed me recently,
 I wouldn’t wish this experience to happen to anyone. 
Life hands each of us challenges through which we can choose to grow or grow a tumor. I’m choosing to grow. 
Read about it here: Life's Perfect Storm
It’s taken me a long time to say that. 
I am thankful for where I am in my life today. 
I know that each moment was a step to get here, so I am thankful for the family skeleton who has been set free rather than continuing to hold me prisoner.

Finally ~
There's an end to every storm
Once all the tree's have been uprooted
Once all the houses have been ripped apart
The wind will hush~
The clouds will part~
The rain will stop~
The sky will clear in an instant
and only then~

 in those quiet moments
after the storm do we learn~
WHO was strong enough to
SURVIVE...


I thank my husband and daughter again for NOT giving up on me!!!

Thursday, May 16, 2013

~ Life's Perfect Storm

I was starting to get the hint that maybe my body was pissed off at me for how I had been living my life; that perhaps my body was done "whispering" when I wasn't listening. 
And it began to SCREAM...

That's when Life's Perfect Storm hit

~ They say when your life falls apart, you either GROW or grow a tumor ~

In January 2012, I decided that I was done manifesting my mental, emotional and physical afflictions.
 And instead of growing more tumors, I chose to GROW!

GROWING meant meeting my inner pilot light. My inner pilot light that suddenly flamed one day. A heated voice from within that started to guide me to the life I was meant to endure. 

A heated voice that told me to, "Strip off those masks I've been wearing my whole life. Stop selling myself short. Stop trying to please everyone. Stop pressuring myself to be perfect. And quit apologizing for who I really am!" I knew deep down that this voice was my intuition, and if I don't listen to it now, I will probably end up alone. No marriage and a daughter who wishes she'd never knew me. 

So I listened...

Took a Leap...

Took the Prescription...
To find a Psychologist I like and to see her frequently. To get pissed off at the people who sexually abused me as a child. To get on with MY LIFE! To NOT look back. To STOP caring about the needs of others while neglecting my own. The prescription was to move the fuck on... 

Everyday I asked my inner pilot light what my body needed in order to heal and everyday I did exactly what my inner pilot light prescribed. 

~It was medicine on my terms~

I starting the healing process of:
Re-kindling my marriage.
Mending a mother daughter relationship.
Not looking back.
Started to BELIEVE in myself for the first time in my life.
Starting "The Plan."
Starting a running program.
Kicking to the curb "My Ugly Childhood" & Moving on for the first time in my life.
Realizing that those who "claim" to be Christians are anything but.


And when I listened to my inner pilot light and had the guts to follow through on my prescription~ 
seemingly incurable thoughts/images suddenly disappeared!


I am happy, for the first time in my life, I am TRULY happy!
I have a lot of healing to do
I'm nowhere close to being "cured"
But I have gotten thus far in 16 months, I can only imagine the happiness my future holds. 
A future with the most amazing husband and daughter one could ask for!

~But medicine on MY terms has so far proven to be the best treatment~
Seeing a Psychologist weekly, proper nutrition and exercise has provided me concrete evidence that the body is equipped with innate self-repair mechanisms. That Moving on IS possible. I'm not saying that I'm not on any medications, because I definitely am... But removing myself from my past has also helped more than I can say.  But the power of nutrition & exercise has surpassed any medications I've been on thus far. 

~I am not my past~
In December 2012, I was referred to a NeuroPsychologist.

 Again.

I saw one {Ironically} in 2005 BEFORE my 8 brain surgeries.
 In 2005 my Neurologist sent me to a NeuroPsych after learning of my childhood sexual abuse. He wanted to make sure I wasn't, "Making these headaches up." My results were normal. This year I repeated those same tests, and had dramatically different results. So much of the chemical makeup of my brain has changed from several surgeries. The Frontal Lobe of the brain is in control of many functions. Many functions that were not working for me after 8 frontal lobe surgeries. 16 Surgeries in all that affected my brain, and suddenly I started slipping away into another person in 2011. I have what is called Dissociative Fugue. I never heard of it before, but when my Psychologist gave Jeff & I the information. It was like an "ah-ha" moment... Things were happening that I could not control.
Memories that I do not hold, even still to this day.
And after my last brain surgery in Oct '11, our lives absolutely fell apart.
But after getting confirmation from my NeuroPsychologist that I was not in control of what I was doing,
due to all the frontal lobe damage,
 Jeff put that terrible part of our life at rest and dismissed our "pending" divorce.

I learned through therapy
 that this can happen to an adult who suffers from childhood sexual abuse and never receives the help they need. I buried my life in my work, I worked full time until I was unable to work any longer due to the surgeries.
It will take something very wrong for me to have brain surgery again... All the brain damage, losing my job, 2 best friends and almost losing Jeff & Tiffany was not worth it. I still struggle with the headaches. I deal with it now as best as I can.

 The past cannot be changed, but the future holds PROMISE!!! 

I was starting to get the hint that maybe my body was pissed off at me for how I had been living my life; that perhaps my body was done whispering when I wasn't listening. And it began to SCREAM...
The Storm, at long last, has  finally lifted.

Finally ~
There's an end to every storm
Once all the tree's have been uprooted
Once all the houses have been ripped apart
The wind will hush~
The clouds will part~
The rain will stop~
The sky will clear in an instant
and only then~ in those quiet moments
after the storm do we learn~
WHO was strong enough to
SURVIVE...

Friday, January 25, 2013

~Living Again January 2013

Thankfully~ 
Our Lives have been amazingly better over the last year. (My health is a whole different story.) A lot has happened since my last post in February 2012. From January 2012 to August 2012 I was seeing a Therapist/Counselor, that was helping Jeff & I mend our marriage. 
{{Which is going great these days }} 

In August 2012 I had my hearing in front of a judge for SSDI. Again I was denied. Our lawyer withdrew from the case, which was a good thing, we were gonna fire her anyway. She did not do a good job presenting my case, nor my daily struggles/disabilities. Nor did she present my cognitive decline that I now struggle with after 8 brain surgeries. It took us until late September to find a lawyer who will take the case over at this point. But we found a lawyer out of Chicago, Il who has a satellite office in Munster, In. We presented the case to him, and he took my case without hesitation! He has filed the appeal, and we had 30 days to submit any new information. I had a bunch more tests done, some duplicates of past tests to prove NO improvement of the difficulties I have with my two brain diseases, and other aliments.  
Unfortunately, as we all know, it is very difficult to get into a new Dr in 30 days, then to have tests scheduled, performed, results read and interpreted within 30 days. So now I sit waiting for results of tests I had done in December, and in early January. 
Needless to say the 30 days has now past. 
The process now is for another judge to review the case as it was presented at the August 2012 hearing, to see if the judge did in fact make the right decision. That will take another year I'm sure. We will give the lawyer the new test results when I get them to see if he can still submit them. The good thing is that this new lawyer is excellent at these types of situations. And while calling around to find a lawyer to take my case, I was referred to him by several offices!

{{ Nail Biting Situation }}
My long term disability I currently have from my last job, is now up for a 2 year review. Being denied SSDI, they are trying to determine whether or not I will continue to get LTD with my current status. I have not heard from them yet... 

Still seeing the Psychiatrist I have been seeing since last year, I am also seeing a Neuro Psychologist for Neuropsychological testing, and a Psychologist for therapy. The neuropsych testing will be compared to the neuropsych testing I had done before any brain surgeries.  
{{ That ought to be interesting! }} 
Already he is very concerned with my memory issues. (that have not improved yet from October 2011 brain surgery) All tests are done, now we wait on our appointments in February & March for the results. He even did an additional memory test that insurance does not pay for, at no charge to me, he wanted to confirm that I have severe deficits with my memory. My previous Dr did all the tests in one 8 hour day. This new Dr spread it out in 3 visits! The tests are just too grueling for someone who has had 16 surgeries, to do it all in one day.

{{ ON A COMPLETELY DIFFERENT SUBJECT }} 
Tiffany, my almost 18 year old beautiful daughter, graduates high school this year! AND has been accepted into the nursing program at Valparaiso University. A not so easy school to get into, not to mention an almost impossible nursing program to get accepted into! She has nearly been a straight A student for all of high school. Jeff & I, are incredibly proud of her! She is thinking about a Nurse Anesthetists career, but still has her sights on Pre-Med. 
My relationship with Tiffany was very strained in 2011. I am happy to report that we are about 98% of our old {{mean girls}} selves! She is a very distinguished young lady who has made her dad and I so proud... Today we made a purchase for her graduation gift. I cannot say what it is, as she will see this post. But she will be more than elated! And it will be very hard to NOT give it to her early! Something I have a bad habit of doing!

Jeff is doing well in his apprenticeship program with the Boilermaker's. He is more than half way through, and well on his way to making the scale wage he truly deserves! He has been a very talented welder for about 18 years, and I couldn't be prouder of him for making this difficult career change when he did.

{{ Jeff & Tiffany are my whole world, and I don't know where I'd be without them! I Love you guys! }}


Monday, February 20, 2012

~BELIEVING

If you've read my journey to date, you are aware that I had a very rough end to 2010.  And a not so great 2011.  9 surgeries between the two years and a lot of antidepressant drugs to keep from falling too far into depression.  My disease finally took my job away from me, and that was a ROUGH pill to swallow.  I had enjoyed working ever since I was 16.  To not work is a whole new ballgame to me...

2011 started out rough with  2 failed surgeries in Nov. & Dec. 2010.  The ventricles in my brain failing to support my brain shunt any further.  Reverting back to [another] Lumbar Shunt. Surgery after surgery in 2011.  I sometimes joked about being an Anesthesia "junkie" it seemed I was having more surgeries than not... I had actually became a familiar face to the preoperative holding area.  People new my name.  It was a joke after a while.

I fell to some hard times with some family members.  I slipped further into depression.  My family doctor had prescribed more & more antidepressants, one on top of the other.  From January to April he (my Dr) had added one a month, to end it in April with Ambien thrown into the mix.

Jeff had quit his job of 11 years, to work for the Boilermakers.  That was stressful on all of us.  I was in the middle of 9 surgeries and we switched insurances.  But Jeff didn't get insurance right away, like all new jobs, there was a 90 day waiting period... We had to pay for COBRA, and with my 2 brain diseases, it was not cheap. ~STRESSFUL~

In October 2011, I had what IHope was my FINAL Brain Surgery.  Dr Turner in Indianapolis, Indiana was my new Neuro Surgeon.  He was very optimistic to restoring my brain shunt function... He even gave me a programmable CODMAN Brain Shunt so I wouldn't have to endure any more surgeries or spinal taps!  I remember bits and pieces of the long drive to Indianapolis the day of surgery.  I remember bits and pieces of checking into the hospital, and being taken to the pre-op area. That was it for it for exactly 5 weeks.

Memory loss was expected for about 7 to 10 days after surgery.  NO~ I had exactly 5 weeks of complete memory loss after surgery.  During that time I had been admitted into Porter Stark for 5 days, and wanted a divorce from Jeff.  When I got out of Porter Stark I lived with my parents for quite a few days before leaving for Texas. I was in Texas for nearly 2 weeks before "waking up" on Friday November 18, 2011.

My dad had surgery earlier that week, and was not doing well.  Jeff finally got ahold of me and arranged for me to fly home.  I had no drivers license, no ID, no money. I was completely out of my mind to leave Indiana without any ID... I talked to Jeff on the phone for several hours that Friday, about where I was, and what I was doing there.  He told me that my dad was not well, and if I wanted to see him alive, I needed to come home now.  He arranged for me to pick up my ticket at the airport, and to speak to TSA so I could get on the flight with no identification.  That Saturday I flew home.  Jeff took me straight to the hospital to see my dad. During the drive I had mentioned that I couldn't wait to see my dog Shadow.  I had missed him so much.  That he would still love me regardless of my mistakes... We had our dog of 12 years, put to sleep in August 2011. I didn't remember that, and had to relive that all over again. (And that was WEEKS before my brain surgery in October.)

When I first came home~ I again, was living with my mom.  A week had gone by, and Jeff & I finally agreed upon me coming to live at home again.  I have been home ever since.  It has not been easy.  I Love Jeff & Tiffany with all my heart!  I cannot believe all that has happened. I nearly lost my life... I did lose a best friend, sad to say... that is one relationship that will never be mended.

I started seeing a therapist in January. And I am seeing a Psychiatrist in a few weeks.  I'm waiting on an appointment with his office.  Hope to get some answers from him, about my crazy behavior and the memory loss BEFORE the October 2011 surgery. Was it the combination of medications I was taking that had me all screwed up. Or was it something completely different.  We are all very interested to know what the heck happened to me.  Hell~ It happened to me, and I couldn't even begin to tell you what I think happened...

I am very grateful to Jeff & Tiffany for not giving up on me, and for BELIEVING in me...  Believing that there was something more wrong with me, and there surely was.  I'm grateful for the friends who were here for me to lean on despite all that had happened and the lies that were told... The one's who hugged me and said they were glad I was home safely.  Those are TRUE FRIENDS!

To this day I still struggle with my memory, granted it's not as bad as it was in November & December.  But I still have to write things down more frequently and have to refer back to notes, and conversations.  I am on a LONG road to recovery, it has not been easy! I feel like I lost a whole year of my life. I've waited so long to turn 40... LOL, I know~ most people dread that very day... BUT my 30's were just one surgery after another. Almost 20 surgeries in one decade is more than anyone should have to endure... There is more to this story (obviously) but it's not for public knowledge. I made some really bad mistakes, but with a little help from the prescription drugs I was prescribed...

I'm not perfect, never claimed to be... But I do admit to my mistakes! And I am getting the help I need!

Thursday, October 6, 2011

Hello Brain


Hello,
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
Love,
your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.