Working Together To Make Life Work

Barry and I have come upon a challenge. We are having a communication issue. After everything Barry endured since August, his response time on everything is a slower.

We butheads when trying to have a conversation and when he is driving. He has never liked being told what to do, but now…..WOW! He snaps a any suggestions and he doesn’t let me finish sentences. I speak slowly at times and other times, my brain doesn’t let the right words out. Leading us to an occasional argument.

We have worked a system out to keep our cool with each other. It all involves redisvovering the quality we both possess “patience”. If he us not letting get words out, I let him know or gently remind him to be patient when I am having difficulties.

Unless I feel like I need to say something to him about his response, I don’t and will bring the topic up later when it can be discussed calmly. As his body heals and all the medications are out of his system, his responses will get closer to normal.

Everyone responds to anesthesia differently and he has been under general anesthesia 3 times since August 2013 with his chest opened up four times. My radiation treatments ended the day he was admitted for the last surgery. We both have a bit of healing to do!

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We are back, at least for the moment!

In our earlier post, we stated we’d try to get a post in a week. Maybe more. According to how our day goes! Between radiation treatments, Barry’s doctors appointments and our energy levels; we are lucky to get anything posted. Have patience. I have taken pictures and written posts while sitting around the hospital. A lot of interesting things go on in local hospitals! Just wait……

Writing Through Cancer: When life hurts, writing can help. Weekly writing prompts for those living with debilitating illness, pain or trauma.

Stories—the small personal ones that bring us close as well as those of the larger world—foster compassion.  In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, [you] help heal each other’s spirits.

–Patrice Vecchione, Writing and the Spiritual Life

Growing up, I was a shy child. As the years went on, I came out of my shyness a little, but as I grew older and started getting serious about life the shyness reappeared in certain situations.

I think we all go through an awkward phase as a child, I’d say I hit mine around the sixth-grade or seventh-grade. The summer I turned twelve years old, I shot up over six inches in height. Mom thought she was purchasing stylish glasses for me, when truth be told, they were the ugliest glasses I had ever seen.

Anyone with an opportunity and a mean streak took it upon themselves to let me know how gawky and goofy I looked in those glasses. As I got taller, I was the second tallest girl in my class and the first girl to develop in all the right places. I was taller than everyone in the class. That just added to the fire.

Another thing that added to my “nerdy” status is that I developed allergies as a child. I grew up when they didn’t know how to treat allergies. I was always sick, had a lot of food allergies and did a ton of throwing up after meals. Not so easy to make friends when you are literally the snotty girl, always scratching and have the ability to vomit at the drop of a hat. Kids can be so mean. I was sick so much, mom thought I needed to see a doctor daily. The ironic thing about mom running me to the doctor constantly, was that the brain tumor I have has been there since I was a child. I was sick, but not for any of the reasons she was taking me to the doctor.

All of these, should have been good things, but the kids I grew up with saw a vulnerable girl they could hurl their latest ammunition at. It was like some bully kept a book and said “let’s pick on her today.”

One stupid new girl decided she would target me on her own. I became her pet project at her new school. She took particular dislike to my glasses. I was called “Four-Eyes” so many times in the eighth-grade that I decided to let her foolishness stop bothering me and decided to kill her with kindness. Sometime in the night-grade,  the bullying stopped. The new girl, never turned nice through four-years of high school, but it didn’t matter. I didn’t let her get to me.

I took my classes, did my school work and survived high school. Most of us do. What you have to remember about bullies, is that they are just jealous or sometimes it could be as boy or girl who is sweet on you and doesn’t know how to handle their own feelings. Be patient growing up, God will get up through it! I went to college away from everyone I had known for years.

After graduating high school, the shy girl came flying out of me again. Nursing school put me into situations I didn’t know how to handle, so I did my best. If I was uncomfortable in a situation, I worked my way through it. After I was married the first time, I ran into people here and there. What I noticed the most, was they acted like we were life long friends. God says to forgive and I have forgiven.

Doctors are not kind to new nurses or old ones at that. My first nursing job, opened my eyes to how crude the medical profession can be. You would not believe, what goes on behind the scenes, at some hospitals here in Georgia. In all my life, I did not realize how ugly people can be to one another. I grew-up quickly.

After my first husband and I divorced, one of my first jobs as a single woman was at the local jail in my hometown. The saddest part of that job, was seeing more people I went to high school with in jail than on the streets of town. A few were hard to believe, but others I had seen in trouble for years. I dated a deputy for a while, and he got a bit stalkerish. Someone in jail, that I had known for years, stood up for me. He did the right thing and said something when the time was right. I never got the chance to say thank you! Thank you, Joe! I know he’ll never see this, but at least I have said it.

I went through many jobs, that finally lead me to the career I was meant to have. I stayed with that career until I was forced into retirement by a nasty brain tumor called a gangliocytoma. I would later discover the tumor was just a symptom of a genetic disorder called Cowden Syndrome. Sine that diagnosis, I have survived Thyroid Cancer and I am dealing with breast cancer. Every month, I am in some doctor’s office being probed, prodded or x-rayed.

Note to all doctor’s that do lumpectomies, tell your patient’s about the fluid build-up possibility and the possibility of acting like a leaky pipe under your arm. It would make life after lumpectomy less stressful.

I’m getting tired, but I refuse to let this mess get the best of me. God has a plan for my life, otherwise I wouldn’t still be around. It is not my place to question that plan. I have tolerated this breast cancer episode better than things in the past. Either I am tired of fighting, or learning how to give it to God finally. I’ve prayed about the subject. It must be sinking in.

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Please Forgive My Absence

Please forgive my absence for the past few days. Imagine the nerve of life getting in the way. I’ll admit I let the “poor pitiful me’s” get in the way. When my favorite urologist found my new problem, my mood kinda hit the toilet with a big splash. I’ve had 2 days of sulking and I’m tired of being the only “stick in the mud” at the party.

Time for a reality check. Yes, I am sick. Yes, I hurt all day everyday. Yes, I have to see a lot of doctors. But………I love the Lord, I adore my husband, I have a loving, happy, sometimes screwed family, I have 2 great pets (a dog that thinks she is human and a fish that will come to the top of the bowl when called), I have a great life.

Why I let myself get all down and depressed, I’ll never understand. One doctor I see told me to quit worrying about getting upset. He said it’s not like I don’t have a million things to worry about.

Maybe all this studying and work I’ve done, on turning my issues over to the Lord, is working. It was much easier to turn this over to God, than in the past. I really think that listening and learning in church is the way to go. Growing up, I was more concerned with who was at church, than what I was learning. I’m learning a lot at Victory Baptist Church, they are such a truly incredible group of people.

Tomorrow is the MRI of my abdomen and pelvis. I’m praying that whatever Dr. M saw on my liver is no longer there. Please think of me tomorrow, Barry and I can use all the prayers we can get.

 

My New Least Favorite Words on Earth: Incidental Findings

Dr. M, my now urologist, seems like a very good doctor with a great personality/bedside manner. My appointment today went great. The kidney ultrasound is good, with one little issue to follow. Otherwise Dr. M. says my kidney’s are beautiful. Awwww, how sweet. They better be! About the only organ I have left that functions correctly.

What gets me about Cowdens Syndrome is the unknown. Today, I’m told I actually have an organ that is functioning properly, but we need to watch this “one” little spot. We want to make sure it isn’t something forming that shouldn’t be where it is. So, my roller coaster of doctors continues.

On top of the little spot that needs watching on the right kidney. It appears there is an incidental finding on my liver. He would  like to schedule an MRI, to get a better look. So, more tests, more waiting and more unknowns.

I feel like I am fussing about what is going on in my body. I truly believe that Jesus died to save us from our sins. I believe that the Good Lord has a plan for us and we shouldn’t question that plan. My life is in his hands and I am not exactly how to hand my troubles over to the Lord and not worry.

After my appointment today, I wasn’t what I would call questioning things, but I was so frustrated with the news that it brought me to tears. When I got to a private place, I asked the Lord for the grace and strength I need to make it through all of this news. My fears eased.

It is just so incredibly hard to deal with all of this. Today, I felt like the robot from “Lost in Space“.Turning in circles, arms flopping, thinking, “fix me Will Robinson, fix me!” If it were only that easy.

 

Daily Prompt: VIP

Who’s the most important person in your life — and how would your day-to-day existence be different without them?

Barry, my husband, is the most important person in my life. Unfortunately, at age 47, I have found myself in need of a caregiver.

Barry, not only has the role of the love of my life, but he is legally considered my caregiver. It kills me that my body has done this so early in our marriage, but you deal with what life hands you and take things one day at a time.

The good Lord has his plan for each of us, it is not our place to argue the plan. As a previous teacher I had would say; “you know a plan exists, whether you know the content or not, you work, girl, work it!”

Barry is my helping hand in many daily activities and my own personal engineer. I hold Barry to get out of the tub, but I can get in. He has made sure I have all the proper rails and no-slip gadgets I need around the house.

He treats me like a normal human being. He doesn’t treat me like a baby. I love my mother, but she thinks I’m 10 years old when she helps with anything. I’m glad she is here, because I don’t like being home alone.

I fell once in the garage, while home alone, I just happened to be on the phone when it happened. Help was as phone call away. Thank the Good Lord above. I fell into a box of framed pictures, shattered glass and broken frames all around. Terrified, I froze until help arrived.

To be honest with you, I cannot imagine life without Barry. You know, I can’t even get a bra on straight without him. Trust me, I’ve tried, you can find yourself in some serious pickles, trying that alone with one hand. Wheewww…..I could tell you some stories. I refuse to start wearing those pull-on things. They are too hot.

Without Barry, I would need someone to do any driving further than 20 miles away. Yes, mom lives with me, but I refuse to get in a car with her driving. My heart can’t take it.

I’d need someone to manage the yard work, pay the bills, go to the grocery store and make sure I take my medication correctly. There are days, that my brain tumor rules, and it is close to impossible to even get out of bed. On those days, I’d need someone to cook, make sure I eat and clean up.

I cannot do laundry any longer, so that is another thing I’d need help with. Someone would have to walk and feed the dog as well. I can’t leave the fish out, but I believe I could manage the fish food and watering the plants.

In December of 2011, Barry had a massive stroke and I almost lost him. The doctors actually tried to prepare me for the fact he would not make it through the night. Losing him, I think would have killed me. I hate to sound selfish, but God wasn’t finished with him yet. He knew we needed each other.

To date, other than a few deficits, Barry whipped that stroke in the butt and is back to helping me whip this brain tumors butt. We work together, to make sure everything gets done; with mom quietly tagging along. We all take care of each other and it works.

To answer this prompt, I know everything Barry does for me daily and I do not want to even think about my day-to-day existence without him.

Life would be hard and I’d have to let too many strangers into very personal parts of my life.

Yes, mom could help more, but she isn’t as strong as she used to be and I do not want to be the cause of her getting hurt.

Bear bear says, Yeah!

Bear bear says, Yeah!

Dealing with the after Effects of Falling

???????????????????????????????????????To date, I have avoided “major injury” falling. Although, there is an indention of my head in the living room; I have ruined a box of pictures and found myself stuck, without help, in the middle of a box of shattered glass and a broken picture frames; I have gone head over heels when I fell in the recliner; I’ve fallen from the top step in the garage backwards flat on my back; and I only have 2-3 throw rugs left in the house because I trip on them, causing twisted knees, sore elbows and shoulders. We have done our best to fall proof the house, but it still happens. I’ll find out tomorrow. At this point, the injuries have been a mild concussion; torn meniscus in my left knee; stitches in my left elbow; and whatever the doctor says I have done to my left knee this time.  The radiologist the performed the MRI, told me my left knee is bone on bone. It will be interesting to see what the doctor has to say. If a new knee is worth it, should I do it? All these questions, I’ll have to wait for answers.

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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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Round Four Finale

MM900295156Biopsy results are NEGATIVE! NO cancer. They still want me to have an MRI, because they do not have a solution for the problem. But no cancer!!!!!!!Thank you, thank you, thank you!

Saw endocrinologist today about thyroid scan. It was clear, but there is a lymph node she wants to follow. Which means she wants to schedule a thyroid scan! I hate the thought of another thyroid scan. You have to put your system into hypothyroidism before the test.

Last time, they were out of the injection to do this for you and I had to quit taking my medication for 3 weeks before my body converted to hypothyroidism. I was so weak, I could not walk. I was having to use my wheelchair to get around everywhere.

But I’ll do what I need to do to make sure I stay cancer-free. I may not be happy, but I’ll do it. I’m hoping Thyrogen is available and taken care of in 2 days.

Get results of the MRI on my left knee, next Tuesday. I have the feeling surgery is around the corner. But again, I’ll do what I have to do to stay healthy.

I can’t wait to get back to my full exercise routine. I miss it! Gonna light a fire under Barry’s fanny to get him moving with me. We may even get Maggie in on it!

Well, I’m putting this tablet down for the time being. We have to run an errand. Round 5 starts next week, with God leading the way. I hate to think where I’d be without the good Lord guiding us through this mess. Still taking things one day at a time. Thanks for your comments and support.