Category Archives: sisters

Daily Prompt: VIP

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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!

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

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 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 Three on Appointments

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MP900446597In August of 2012, I fell backwards down the garage steps. I busted my head and elbow. No stitches in the head, but I had a concussion. My left elbow took the brunt of my fall. I got five stitches. My elbow still hurts a good seven months later.

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A couple of months ago, I slipped on the rug in the restroom and twisted my left knee. It took a while for the problem to show up, but I am having an MRI of my left knee-joint in the morning. The doctor is thinking I may have screwed up the cartilage in there and need to have it repaired. Hopefully, they will find the problem tomorrow.

I’ll follow-up with the doctor next week. I truly do not want to hear the s-word, but I do enjoy walking. As usual, it is in God’s hands and I will let him work his plan. While I take it one day at a time.

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Yearly MRI √

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With Cowden’s Syndrome, you have to follow a set schedule to keep up with which screening is next. Then, of course, if there is a problem, the screening and recheck can run together. 

Today, I went for my yearly MRI, about the brain tumor on Monday at 1pm. This is where screenings can run together.

I had a breast issue last year that caused them to redo my mammogram, which has led to other mammograms, ultrasounds and now, 6 months later, a biopsy. Scheduled Monday, one hour before my neurosurgeon appointment. At least they are within walking distance of each other.

The sad thing is, my next yearly mammogram is due in April. But I guess my mammograms are about to put a kink in my set schedule. In my schedule thus far, gynecologist, endocrinologist, neurosurgeon, neurologist, neuro-oncologist, gastroenterologist, dentist, urologist, dermatologist, psychiatrist, counselor, genetics counselor, general practitioner, breast specialist, otolaryngologist, cardiologist, massage therapist, and acupuncturist. 

Now, that I have boogered my knee up, I have to add an orthopedic doctor in there. I am sure surgery is in the future for that, which will add physical therapy into the mix.If surgery is in the mix for the next few months, I need to see about getting the lump taken out of my right wrist while they are at it.

The fancy MRI on my left knee next Thursday, then see the doctor Friday. The endocrinologist is in the mix next week somewhere. I’m getting tired thinking about next week. 

Barry is my riding buddy. I’d be lost without him. I can’t drive long distances, so he gets me to the long distance rides. I’m tired of being organized. I never considered myself organized, but with all of this, you have to be. All of the above is just me, included in my mix are Barry’s appointments, as well as several I take mom to. I’m not making light of their appointments, mine takes up more calendar space than their’s does. We should hire a good personal assistant……

Double Whammy…you have to love doctors!!!

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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…

 

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Daily Prompt: Childhood Revisited

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Sure, you turned out pretty good, but is there anything you wish had been different about your childhood? If you have kids, is there anything you wish were different for them?

I am doing my best to decide how to put this in writing. I thought about this all day and have narrowed it down to two things I wish would have been different in my childhood. I’ll do my best not to ramble, please be patient.

My sisters and I had a traditional southern upbringing, dysfunctional family and all. Our parents encouraged us to study, we knew right from wrong, and we loved each other. Mom and dad worked all the time. Mom stayed home until we were old enough to be left home alone and then she started working, She was home when we needed her, or at lease close-by.

Dad left in the mornings before we ever got up and was not home until we were in bed. On the weekends, he worked his secondary business and was home only at night. We had our family nights when dad was home. We actually had breakfast and supper around the dining room table several times a week.

I grew up wanting for nothing.  If we ever wanted anything extravagant, we had to save our money up or wait for a sale. I believe that is where my frugal attitude comes from today!

During the summer months, mom and dad always made sure we stayed busy. I know my way around the Bible, a softball field, a basketball court, and a swimming pool. Mom and dad made it to the important events, but there were times we were on our own.

One of the things I wish could were different from my childhood is going to church as a family, instead of being dropped off at the door to attend services with my sisters. Don’t get me wrong, my sisters and I are close, due to the time we spent together. It would have been nice having mom and dad with us at church. I truly believe that they both believe the Jesus died to save us from our sins, but I cannot help feeling unsure of their salvation.

Mom lives with me now, and attends everything Barry and I attend at church. Dad is a different story. I do not remember the last time I saw him in church for something other than a funeral. His health is declining and he does not get out like he used to, but I know he grew-up in the church. It would have been joyous to have all five of us in church at the same time. Well, the past is the past. All we can do now is look forward.

My second thing I wish could have been different during my childhood is medical technology. From the time I entered kindergarten through high school, I was always sick.

Mom spoiled me rotten and my sisters still pick on me today, because of that.

I was part guinea pig when they thought they had figured out a treatment for allergies. They did all the testing and I suffered through the intramuscular injections for years, before they figured out it could be done with a subcutaneous needle, just under the skin. The nurse’s from the seventies, learned to give an intramuscular injection into the shoulder. There were several times I actually felt the needle hitting the bone. It was so painful. I took the injections without success for years and then refused to go.

In my teenage years I developed female troubles. We let the doctor do the known treatment for my problem at the time and it rendered me unable to have children.

If today’s medical technology had been around in the seventies, maybe I could have had a normal childhood and been able to have kids today. In my world, Claritin is the best invention of the twentieth century. When I was younger, Dristan was it. With today’s medical technology in the past, maybe brain tumor research would be further along today and I wouldn’t need a wheelchair when my legs do not work.

My life has been God‘s plan and it is not my place to question it. I read my Bible and try to stay upbeat and focused. I pray daily and ask for grace and wisdom to help me make it through the day. I exercise to stay strong and keep busy. My blog is my refuge for my feelings and such. It helps me not to hold things in. I write them down. It is very therapeutic to me. My counselor advised me to either do a journal or start a blog.

To summarize, my parents being more involved with my sisters and I at church; as well as, today’s medical technology being available in the seventies, would have made my childhood a better place to be. Honestly, I wouldn’t interfere with God’s plan for my life. I grew up loved and happy. Everything else is all good!

If, if, if, maybe, maybe, maybe…….