FeFe’s Fight with Brain Tumors, upcoming Mega Yard Sale Fundraiser is featured on the Clanton Advertisers web site today to be published in tomorrows paper, Friday, June 21st edition. We are so proud of our small communities involvement and support.
Please keep FeFe in your prayers. She is in the hospital ER right now suffering from excruciating pain and nausea.
It’s been a month since my Neurologist told me to go on leave from work. It seemed reasonable at the time because of my upcoming appointments and travels to Vanderbilt Skull Base Center, but it’s been really hard. I know, you are thinking, what is so hard about not working? I had prepared myself, knowing what I would have to do, issues I had to handle and things in my life I would have to reorganize. What I didn’t realize going into this was the toll is would take on my self-esteem.
On a return visit to my Neurologist, he told me that I would not ever go back to work. Hearing I would never work again was so tuff. I have worked hard my whole life. Most of which I did as a single mother. Working was part of my life. So my life has changed. I am now considered disabled. Makes me wonder, why do we have to put labels on everything? Labels are difficult.
I choose not to place “DIS”, in my ability.
A new beginning….. All part of Gods plan for me.
I will continue to “work” hard on my mission to set goals, accomplish them and make my wishes come true in an attempt to raise awareness about brain tumors and aneurysms, intracranial hypertension and NFB2.
My 1st goal is well underway:
To contact the Brain Tumor Association to identify what requirements and guidelines are necessary to start a local chapter? I have requested the information necessary from the Association and look forward to getting started.
Until the next time,
Today instead of talking about my fight, I wish to devote this time to tell you how proud I am of my children.
This week my three sweet adult children are going through their own struggles. They have learned that their biological father is critically ill. Their relationship with their father has been distant and estranged for a long time. They were close to my best friend and husband Devon who we lost to a massive heart attack, November 2009. These precious children have endured so much heartache and loss in their short lives. As a single parent for over 13 years, I so wanted to shield them from the hurt and sorrow that has been placed in their path. We all know that is impossible. I know as a mother, I can only guide and encourage my children down the path in their own journey.
My illnesses and the fear of the😍unknown that follows each test and procedure I have endured has been such a challenge for them. It breaks my heart, knowing they will have to face those feelings of loss again, together with letting go of past hurt so forgiveness can continue to surface. I am so extremely proud of the beautiful adults they have become.
Please keep my children in your prayers.
May God to continue to guide them through the bumps and turns in the path of each of their journey’s so their load are lightened and their hearts filled with peace.
You too are in my prayers,
All Proceeds to benefit FeFe’s Fight with Brain Tumors
Indoor Community Yard Sale Fundraiser
Saturday June, 22nd – 7am – 2pm
BARGAINS & TREASURES FOR A CAUSE
Clanton First United Methodist Church
Helen Parrish Activity Center
207 8th St N Clanton, AL 35045
We are accepting all donated items to sell!
Follow her Blog – Fefesfight.com
Spread the word,
FeFe and her followers
It’s hard to believe that it has been almost a month since my last day at work.
Following my first appointment at Vanderbilt Skull Base Center, I have had a spinal tap followed by an adjustment to the valve on my shut on two separate occasions. It is still not where it is supposed to be to regulate the fluid and pressure on my brain. As a result, I have had very little relief. I have two more doctor appointments scheduled for next week plus another adjustment. Keeping my fingers crossed with a prayer in my heart that I get some favorable news. I want so badly for the doctors to get a grip on my symptoms so I can feel better.
Lately, I have come to appreciate the little things in life that most of us regularly take for granted. Things like grocery shopping, climbing stairs, going out to dinner, playing with my grand-loves and many of the daily chores necessary, are very challenging for me. One thing that has been a blessing to me is recognizing that I am getting the word out thru my faithful FeFe followers about the need for more Brain Tumor Awareness.
So, I have decided to set myself a goal to accomplish each week… What’s a goal without a few wishes!
- Contact the Brain Tumor Association to identify what requirements and guidelines are necessary to start a local chapter.
- Get local business more involved in fundraising events.
- Invite large businesses from our area to support Brain Tumor Awareness as a corporate sponsor.
- Rally suggestions from everyone on unique fundraiser event and ways to spread awareness.
Please reply, I need everyone’s help and input to accomplish my goals for my wishes to be granted!
Until next week,
Love to all,
Hello all my faithful follower,
The spinal tap is over. My pressure was 17 which is on the low side. My Neurosurgeon did the procedure himself because he wanted to make sure I was in the correct position. This was one of the questions I asked at Vanderbilt, who agreed that position is important to get an accurate opening pressure. Because my pressure was low, the Dr wouldn’t draw off any fluid. Bummer! This procedure is what provides me relief for a short period of time. So as you guessed I still have the same symptoms; headache nausea and balloon head, due to the pressure being low. Seems my body doesn’t care if it’s high or low. I wish someone could tell me WHY? I am tired of feeling bad.
With that said, tomorrow I go back to my Neurosurgeon to have the settings on my shunt adjusted. The procedure is done with a special magnet but will require numerous visits before the setting will be correct and hopefully make a difference. Continue to pray that I get some relief soon.
As the month of May, Brain Tumor Awareness Month comes to an end; I want to take this time to THANK YOU for all your prayers and support.
This blog means so much to me. I want my story to reach as many people as possible to get the word out about Brain Tumors, Intracranial Hypertension and Brain Aneurysms. Brain Tumors kill 13,000 people a year and is the second leading cause of terminal cancer in children and young adults. I willingly accept that God has chosen me to carry this cross. I’m proud to do this for HIM so that others don’t have to fight the same fight. We must find a cure!
So let’s make a difference!!
If you are a FeFe Follower, you have made a big difference in my life. Alabamian love our football, but we are also very carrying and compassionate neighbors. We care enough to make a difference in a stranger’s life as you have in mine. Continue to make other aware so we can all FIGHT FOR A CURE!!
Tomorrow, May 29th, will be a week since my first trip to Vanderbilt. To celebrate, I will be undergoing another Spinal Tap!!! The pain of the procedure will be worth it if my doctor is able to relieve some of the pressure that’s been causing me so much discomfort. I continue to have severe nausea and feel like my head is the size of a watermelon. I am anxious to see if my pressure is high or low. If neither is the case, I will have to undergo more tests to determine the reason for the symptoms.
It’s been very frustrating. It’s difficult to determine if the medication Vanderbilt prescribed is making a difference. Simple things like going to the grocery store are a major task for me right now. The worst part is not being able to really play with my GranLoves the way I would like. Hopefully tomorrow I will get some positive answers.
Today, I am thanking GOD for giving me the freedom to choose my own doctors. So many today, don’t have that luxury.
Please continue to help pray for answers for myself and anyone else struggling that is less fortunate.
I spent the whole afternoon being evaluated at Vanderbilt Skull Base Center in Nashville, TN. The facility was so nice and I was very happy with the doctor. She was pleased with the results of the brain scans performed. My tumors and aneurism were not an immediate concern and she didn’t find any blood clots. The doctor seems to think that my current problems all point to the fluid buildup, pressure and positioning of my shunt. She prescribed a higher dose of a drug that I took last year with hopes that it will reduce the buildup of fluid. I agreed to try this drug for 30 days. If it doesn’t help, I will see a neurological specialist at my next visit to Vanderbilt.
- Great News…. Right?
- So, then why was I not happy?
- What was I expecting?
- Certainly not this! I’ve tried this drug last year at a lower dose with NO results.
- What makes her think it will help this time?
Thank you all for your thoughts, prayers and continued support. I am going to continue my fight! No more What’s? Where’s? Why’s? When’s? My journey continues ONE SMALL STEP AT A TIME!
BRAIN TUMORS YOU MESSED WTH THE WRONG CHICK!
Vanderbilt, ready or not, here I come!
It’s hard to believe that tomorrow, May, 22, 2013 at 1:00 p.m., I will be at Vanderbilt Skull Base Center waiting to be called back to meet with doctor’s that could change my whole life. I have been waiting for this day for a long time and the apprehension is increasing. Anxiety threatens to take control at the realism that the doctors may discover there is nothing they can do and that this is the life I was given. I continue to remind myself that God has a plan for me and regardless of the outcome; I will continue living my life in a way God has intended for me.
My thoughts today, as I am lying here writing, are with my grand-love, Ella Claire who is graduating from preschool tonight. I will probably have to miss it because of the way I have been feeling today. Not being able to enjoy life and celebrate milestones with my grand-loves has always been one of my greatest fears.
“OK….STOP IT FeFe”
- I have to keep a positive attitude, not only for myself but for all my earth angels that love and support me.
- I have to make a difference.
- I have to make sure that we can find a cure for this debilitating disease that robs you of your life.
So, with that said…..
Vanderbilt doctors here I come…….
I will not accept that there is nothing you can do.
Tomorrow when this crazy red headed (I Love Lucy) woman walks through those doors, watch out.
This FeFe is ready for a Fight!!