Daily Prompt: Tell us something most people probably don’t know about you.

I decided to make a list to share a few things not commonly known about me, as well as a few you should know if you keep up with my blog.

1. We love the Lord and our life as a Christians.

2. We love each other and our family, with all our hearts.

3. We love small town America, but Barry does love the ATL. After working downtown for so long, he learned to love it!

4. I love to read, but have not been able to focus on print since having brain surgery. I love my tablet because I can control the font size.
5. I am learning what it means to get dead-dog tired.
6. We love antiques. They have a mystery about them.

7. We enjoy gardening. Watching something come to life that you planted is an amazing feeling.

8. I’m shy. No really……very shy.

9. I love to draw. At one point, I was pretty good. My disability has effected my drawing capabilities. Barry is an engineer, he can draw anything.

10. I love to sing. I miss singing more than my balance, I think. At church, I just hide in the crowd and let it rip. My disability interfered with my vocal chords taking my ability to sing away. At one point, I was a high soprano. Barry has a gorgeous voice when singing, but I believe he prefers to keep it a secret between his mom and the two of us.

11. My father is gravely ill.

12. I have a genetic disease. My body is prone to form tumors, cancerous or benign.
13. I try not to let my illness interfere with life.
14. We love our sweet puppy-dog! She has saved my life many times.
15. Barry and I are caretakers for my mother. Oh, what a challenge. We always claim we love a good challenge.

16. I’m the middle child of three girls.
17. Barry grew-up an only child.

18. We have one child. Barry’s son, Frank. He hates me. His loss.
19. Barry suffered a large territory right MCA in 12/2011. You cannot tell he had anything happen. He is my miracle.

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20. Our exes would be perfect for each other.

Well, you now know a more about both of us. There is more,  keep reading.

Cowden Syndrome rearing it’s ugly head

Barry is the most patient human being on earth. Either, God is giving him strength or he is hiding his fear really well. We are currently waiting to see a doctor for results of an abdominal/pelvic MRI.

During my renal ultrasound, they discovered something on my liver. The doctor’s answer was it is just an incidental finding, we’ll get an MRI to check it out. He thought he was easing my anxiety.Nope….just made it worse….why don’t they get that?

If they were honest enough to just say it could be this or this…..why not do more test to rule it out…..would have made me feel better……but since when is the patient supposed to feel good after seeing a doctor?

Other than that, even though the breast biopsy was negative. They are still investigating the cause of the problem. Another MRI this weekend and appointments all next week to get results and such.

My body is acting crazy and I can’t get a return call from a doctor to save my life. I am also experiencing a new symptom of cowden syndrome, that no one wants to help me with. These doctors wonder why people get depressed. I have a rare genetic disorder that actually scares the doctors treating me.

Barry is being a supportive dream. I am a fussy mess, he just tells me to relax and go sit down. I love that man.

I’m doing the paperwork to join the study at the Cleveland Clinic. Not sure it will do me a bit of good, but maybe it will help someone else dealing with this mess.

I need to go for now, have a few contacts to make. I think I have diverticulitis again. I have to call my doctor. I need to do paperwork for myself and mom. Have a great day everyone.

Barry and I didn’t know how to act yesterday. We saw a movie and had lunch out without dealing with a doctor’s office.

 

Our 200th post, There is a link to the page, but I also put the post below to avoid confusion

 Click the link for our 200th post:

https://gegebearbear.wordpress.com/200th-post-can-you-believe-it/

The 200th post is below, but I’m gonna leave the page up too. I have removed any mention of a certain person who shall remain nameless. Enough said.

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We thought this post required something special. I find it difficult to believe we’ve been blogging since September 8, 2012! We have been on a journey since that date, but we are holding on strong and closer than ever.

This blog wasn’t our idea, but we have thoroughly enjoyed compiling information for post together. It truly has been therapeutic for both of us. Who would have thought that a counselor, specializing in neurological issues, would know what they were talking about? Maybe that was what we were paying them for? At least our insurance was…..

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We have done so well. Blogging has brought new friends into our lives and seen a few leave. The good seeds continue to take root as the friendships flourish. Others are like annual flowers, they are incredible at first then the heat of the sun fades their colors. Then you pull the annuals and throw them out to put new color in your garden. It is a shame all flowers and friendships cannot be timeless.  Enough said on the matter.

Barry and I continue to enjoy each blogger we have met on WordPress and stay sorrowful over those that did not work out. We have met some incredible people, who have taught us both a lot. Papazilla actually got me to debate a topic in writing, which is something I avoid like. I do not speak well, so there are certain things I do not freely take part in.

I have a rare genetic disorder. I felt so alone dealing with my illness at times, then my friends and family remind me I am not alone. The internet is an amazing tool to use to connect with people you may not meet normally. Barry is wonderful and my best choice to discuss my disease with. Thanks to everyone for being wonderful!

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BrainTumorThursday on Twitter has become a weekly part of my life. When I can take part, I do. When I can’t, I make sure one of my posts, about a brain tumor issue, is on the page. There is such a huge need for funding for research. Brain Tumors kill too many people yearly. I’m including a link to a national foundation for when you would like more information.

Twitter link:

http://paper.li/TumorWarrior/1343039984

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http://www.abta.org/about-us/

http://www.sbtf.org/home.html

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Two groups of hardworking people working to stop the pain of brain tumors. Please check them out. Barry and I take part regularly in the SBTF run/walk to raise money in Atlanta. We enjoy the get together. We also take part in a monthly support group for brain tumor patients. Very helpful group, when figuring life out after a brain tumor.

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http://www.emoryhealthcare.org

I’m including the website for the support group below, check them out. Very enjoyable group.

http://www.neurosurgery.emory.edu/BTSG/index.htm

Tons of extremely hardworking people, check them out!

Check out #BrainTumorThursday on Twitter. Just do a search. Do not forget the hash tag.

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Other health issues in constant need of funding are mini-strokes and strokes. As a nurse, I know what to look for and what they look like when occurring. Many people have health issues happen today and are clueless. They have no idea what is happening or whether to consider it an emergency or not. It is truly sad in my eyes that we are not more educated about our bodies and how we should respond to them when they scream at you,

 ‘HEY, I NEED ATTENTION!’

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I’m so glad I was home with Barry when his stroke occurred. He’s an extremely healthy, highly intelligent man. He did not have a clue or remember anything past us getting out of bed that morning. If he had been home alone, he would not be with us at the moment. God is good and decided he wasn’t finished with Barry. He helped me get the right people on to Barry, then the doctors and hospitals took over. New technology saved Barry’s life. Emory University Hospital had Barry in the procedure room before I made it to the hospital. I thank the Good Lord above for guiding the doctors in the proper care Barry needed. Although, his stroke continued once the clot was out of the picture, Barry is alive and thriving.

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http://www.heart.org/HEARTORG/#mainContent

http://www.strokeassociation.org/STROKEORG/

http://www.stroke.org/site/PageNavigator/HOME

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Since starting our blog, our lives are finally calming down. My illness is settling into a routine of check-ups and Barry is getting stronger each day. Mom is even settling into our routine(Surprise, surprise)

Barry and I are about to embark on a new voyage in our lives. When he retires, we will have time to run around and do what we want. Travel; be lazy;  work in the yard; go to church; visit family; who knows, maybe we will see a movie at the theater…..I have a huge list of ideas, I just have to talk Barry into it. Barry will have a tough time adjusting to staying home. He has driven downtown(Atlanta) to work for over 30 years, sleeping past 6am is already a challenge for him on the weekends. After 9 years of marriage, I can say one thing about Barry L. Baynes. The sweet man despises change!

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If you do not know CPR, LEARN IT! You may need it some day!

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Double Whammy…you have to love doctors!!!

While at a checkup with the Allergist today, I received a phone call from the genetics counselor assigned to me. She had received the results of my genetics test. I apparently do have the rare genetic disorder all the doctors have been avoiding discussing with me. So I am one in 250,000 people in the United States blessed with this genetic nightmare.

Even though one sweet doctor had taken it upon himself to tell me that I could be considered diagnosed with the disease because of my medical history; I felt like a rock had been dropped in my lap. Reality smacked me in the face and now I had to discuss this with my family and get them to be tested. I hate being like this.

I would never wish this on my worst enemy, I certainly do not need to worry about my sisters, nieces and nephews having to deal with this. What about their children? This is just so much to deal with. I was coping fine, until I knew for sure. Now…I need to pray on this…