Category Archives: family matters

Daily Prompt: Musical

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What role does music play in your life?

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In school, music was all I thought about. As I grew older, music became rather miniscule in my life. Church, Marriage, Family, Home-making, and Career kicked in and took over my life.

I have always loved to sing. I have always been part of our church choir. I sang in the chorus through middle and high school. Loved every minute of it. I would sing anything, even theme songs to television shows. Music took a backseat in my life and about the only time I had to listen to music was in the car or on an elevator.In the car, I’d roll the windows down, turn the radio up and sing my fool head off. I was a wonderful feeling. I continue to do so today, but it is not as pleasant as it used to be.

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Since the craniotomy in 2009, my vocal cords have twitched. this makes it difficult to even talk some days. Barry and I found a church home last April and I have begun to sing when the congregation does. My vocal cords are actually letting me sing at times. Although, I’m sure every cat within range is screeching with me, but I give it my all. It feels wonderful to have a small piece of something back I thought I had lost.

I’m not ready to solo, but who knows……..

Georgia Snow, Not!

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Jared's Grocery Store Theory

Jared’s Grocery Store Theory (Photo credit: redjar)

In the past 47 years, or at least as long ad I can remember, people have panicked, raided the grocery stores, and driving like idiots at the mere mention of SNOW/ICE, in this area. Well, I am honestly shocked and surprised. They were talking like we would at least have s little ice. Guess what? No one nutted-up and bought every slice of bread in the southeast. Are we finally listening or is everyone just that broke? Either way, the sun will be out tomorrow and this mess will be forgotten.(till the next storm slides slightly south and the reporters want to get everyone all riled up!

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It might snow in Georgia!

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I grew up here in Georgia, so I am used to the weather changes and everything else that comes with them. When the weatherman or woman mentions that next ‘four-letter’ word (snow), it sets off the mad rush to the grocery store for bread and milk.  it reminds me of one of those old movies that involves a really good sale. There will be a mass of people banging on the store door waiting for someone to open it and then trampling all over each other to get inside.

I have an appointment in a few hours, I plan to stop at the grocery store for a few things. I’ll take some pictures if I can and post them later.

When I was younger, our weather could get bad, quick. It would shut the entire city down for weeks. Now that technology has improved and the weather is lighter; the need to clear out the grocery store, at the mere mention of snow is long gone.

The other side of this story is when there is a bit of ice and snow on the ground, remember how to drive! There are other people out on the road. If you aren’t thinking of your safety, think about those around you! Everyone needs to get home!

Find your Voice

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Today has been a bit of an eye opener for me. I had a fairly decent day. Some so so news from the doctor and got to do my favorite thing, SHOP! I love to shop and window shop. They both relax me. If I can’t buy anything, I get the extra exercise.

Today, my shopping trip involved my mother. While out with mom for shopping and lunch, I finally realized why she can make me mad at the drop of a hat. Since the brain surgery, my voice has not been the same. Talking is a struggle at times. I had a good singing voice and I can no longer sing without scaring the neighborhood cats. It’s like my attempts at running, you do not want to see it. My singing, well, you really do not want to hear it. For years, I couldn’t sing a note, but since attending church and singing regularly. my voice is slowly returning. Still not good, but better.

Well, while mom and I were out today, she attempted to finish every sentence I started and talked over me every time I tried to start speaking. She is just attempting to be helpful and not let anything cause me further stress, but what I need to do is talk to her and the rest of my family about letting me speak. I may speak slowly, but give me a chance. Take the time to listen. The old me is still in this body and I have a voice I want to use.

Mom even took a pen out of my hand today to put the cap on for me. I couldn’t believe it. When I left rehab, they told me a few things to keep in mind; keep moving and if you don’t use it, you’ll lose it. The ground rules about me will be coming out in a few days. The time has come to get everyone on the same page!

 

 

Daily Prompt: Breaking the Law

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Think about the last time you broke a rule (a big one, not just ripping the tags off your pillows). Were you burned, or did things turn out for the best?

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Backseat Betty made me do it! My stepson graduated from basic training and we took a road trip to Kentucky to watch the ceremony. My mom (Backseat Betty) went with us. 

After the ceremony there was a problem with his orders, so he could not leave. Barry stayed with him waiting for his orders and mom, I and Frank’s then girlfriend headed back to Georgia in the dark. We had an eight-hour ride ahead of us with my mother at my side. 

By the time we hit the Georgia State line, I was ready to get out of the car. Fortunately, we were now only three hours from home. The closer we got to home, the faster I drove and mom kept telling me I was speeding every thirty seconds. By the time we got to the Tucker, Ga. City Limits, the police stopped ignoring me. I was pulled over almost immediately. 

I tried to explain the situation to the officer, with my mother chattering to him behind me telling him I’d been speeding since Kentucky. I got the largest speeding ticket, I had ever received, from this officer. I said ‘Thank you’, slowed down and headed home with mom in my ear lecturing me on the dangers of driving fast.

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We were at my house within 30 minutes. I got her bag out of the car, put it in hers and said ‘Go Home Now!’ She didn’t argue, she left quickly.

I definitely felt burned by mom, not the cop. If Backseat could have kept her mouth shut, it might not have been so bad. Today, I flat-out refuse to be in a car with my mother longer than one hour! Let my sisters take her on long trips! 

A Little Girl’s Red-Fringed Boots

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I met the sweetest little girl tonight while attending church. Our church is always bustling with children, from wee-little ones to teenagers ready to hit the world running. The teenagers all dress alike, but they have so many personalities. They all seem to be incredibly good kids.

The wee little ones are always the most precious. Dressed by mommy or daddy in Sunday’s finest. Hairdo’s adorable enough to match their cute little outfits. Bows or flowers for the little girls and the little boys with their ‘spit-shine’ side part trying to make them look like little men. Just adorable.

Today was baby dedication Sunday, and everyone was all dolled up. The color of the day appeared to be red and black. Maybe it had something to do with the falcons playing this afternoon, maybe not. They were just eaten up with cuteness!

This young woman walked in with her mom. She had to be around 6 years old, tall and thin. As she walked past us, I noticed her boots. They did not match her dress, but they were the coolest red-fringed boots I had ever seen. The boots matched nothing she was wearing, so they really stood out!  As she was passing, I called out to her that ‘I love your boots!’

A few minutes later, she came back and started talking to me. Until this point, I had felt the kids just thought of me as the woman in the wheelchair. They were nice, but just ignored me. Almost like they were scared of me. I can be scary, I guess. after all I do walk and talk funny.

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I could not find a picture of red-fringed boots.

Her name was Michelle and she was full of questions about why I needed a wheelchair and what was wrong with me. I answered as many as I could appropriately for someone her age.

Then it was my turn for questions. She thought I was silly when I asked if I could borrow her boots. She giggled said, ‘your feet are too big.’I tried to convince her they would look good with my purple wheelchair, but she just would not give them up. I tried a trade next.

I told her I’d swap my wheelchair for her pretty boots. Her comment was ‘I can’t take your chair, you can’t walk.’ Just adorable. She told Barry he needed to take me shopping and ran back over to her mother.

When church services were over, she ran up behind me, hugged my neck and said I was cool. Made my night, but I still want some boots!

How many one-handed people does it take to change out headlights on a car?

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0511-1201-1903-1206The answer to the above question, at least around here, is two plus one dog to supervise.  Mom has had so many little bumps and bangs to her front fender, that it made it close to impossible to remove the headlights.

Barry tried for over an hour before giving up. He came in defeated. I suggested that he give it one more shot with a little help. In no time, we had the new lights in and working well.

This is just s good example of not getting discouraged and giving up. Barry and I both have weak left hands, but between the two of us we had one good set of hands and got the job done. Making us feel good and saving mom some money.

When I let her know we finished, I suggested she quit hitting things with her front bumper. Her claim was, ‘I didn’t do it’. I just love how she will never admit to doing anything wrong. It is always someone else’s fault. You gotta love her!!!! 🙂

Living with a Rare Genetic Disorder Part 2

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mermaidbrunetteHuge reality of living with a rare genetic disorder, is that you get to know a lot of doctors. I’m enclosing the list I have to keep up with regularly. I’m surprised Barry and I get anywhere when we have a scheduled appointments.

                 MM900283642Primary Care Physcian

                 MM900336585Neurosurgeon

                      MM900282885Neurologist

               fishyNeuro-oncologist

               teddybearitchdrkOtolaryngolosist

               funnyladybug081906Neuro-opthamologist

              bearkiss2Opthamologist

                butterflybug3Orthopedist

              beeani0822Chiropractor

             sickbugs Endocrinologist

              gofishy2General Surgeon

              MP900412070Gynecologist

                purplebutterflyGynecologist-Breast Health Specialist 

                MM900283822Geneticist

                Dentist

              0511-1006-2819-1529_Toothache_Cartoon_Character_clipart_image Oral Surgeon

               0060-0505-2317-5248Gastroenterologist

               MM900336468Psychiatrist

              MP900433140  Cardiologist

That is only 19, but at my appointment this week, it was suggested that I locate a Nephrologist and Dermatologist for routine visits. That will put my court up to 22, I believe. These are just the doctors I see, I did not include Barry and Mom’s doctor’s that are part of our monthly routine.

Between church and visiting doctors, no wonder I’m tired. This is the first time I have actually written all of them down. Honestly, I am a bit overwhelmed.

With Cowden’s Syndrome, the important thing to remember is to closely monitor you health and keep up with yearly test as ordered. Missing one appointment  could mean a major health issue, the life or death kind.

I‘m not ready for such, but if the good Lord calls me home, I’ll be in his hands. My life is in his hands always. I’m learning not to question what God’s plan is for me. Just to put my trust in Him and things will be okay. I’m getting there, Lord….working on the fear of the unknown at the moment. It can get scarey!

Living with a Rare Genetic Disease

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MP900412070My genetic nightmare started when I was 43 years old. A doctor tells you about a brain tumor st the base of you skull and that it needs to be removed as soon as possible. Your mind immediately starts a road race. Why is this happening to me? Will this affect me in the years to come? Will I be the same after surgery? A million question flood your mind.                    

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Neurologist, I guess, are not known for their bedside manner. Apparently, they aren’t known to be free with information, either. Especially, when the tumor you have is a symptom of a rare genetic disorder that little is known about. Truth be told, he truly did not have a lot of answers for me. I think ratio is one in two-hundred fifty thousand.

butterflybug3Dr. O. was unable to remove all the tumor, due to the type tissue the tumor develops from. It makes it hard to differentiate between normal brain tissue and the tumor. When he first told us this news, I thought ‘great, I’ll have to do this surgery again someday.’ Dr. O. assured us we had nothing to worry about, the tumor is slow-growing and it would not be any further trouble. 

gofishy2Within four months after the surgery I started twitching from my shoulders up. On my first follow-up with Dr. O., he said he could fix the problem, but it meant surgery. He suggested we give it a little time and maybe it would go away on its on. 

teddybearlineIt did not, of course. I was referred to another doctor for evaluation and possible Botox injections. During this appointment, it was discovered that my vocal cords were twitching over 200 times a minute. The Botox was useless on my voice. Other than Barry having a couple of quiet weeks when I could not utter a word, it was useless.

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Unfortunately, other issues developed that Botox can help. I honestly had no idea how much pain I had been in until the Botox took it away. Wonderful stuff, when it works. 

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OK, enough about the past. If you have read my blog, you know what I’ve been through and continue to deal with daily. The following list is my day:

Up around 8am

I start doing eye exercises, as I do my squats on our Total Gym.

After the squats, I move to the exercise ball for push-ups and some balance exercises. I also do a little training with weights on the ball. 

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Then to the weights. I spend about fifteen minutes on weight training.

Leg exercises on the floor are next.

Then I head to the recumbent bike for my morning ride. I’m proud of myself. I can do five miles now without pain in my leg.

That takes forty-five minutes to an hour and I do it four-five times weekly. Our dining room has been converted into my gym. My hubby is so creative.

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I get breakfast next. My eyes are able to focus better by this time, do I feel safe cooking. At this point I will put supper in the crock pot.

My next chore for the day works my eyes a little better. I get my tablet out and read the bible, write a post, answer email, whatever else needs my attention.

After sitting down for a bit after my busy morning, I hit the jacuzzi to relax. As long as someone is home with me, I’ll get in the tub to relax. I get my morning care completed, get dressed and head out for errands, if I have any. I drive better than I walk, so relax.

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Early afternoon is usually nap time, if mom doesn’t need help.

After that, I finish supper and wait for Barry to get in. 

There are certain things I do on certain days. If I feel up to it, I go to the gym for my exercising. I get as walk in while at the park.Too cold for that now, but they do have a great trail at the park.

By the time Barry gets home and I’m ready for bed or another nap. After supper, we relax, discuss our day and make plans for the rest of the week or discuss our days.

There are those days filled with church, doctor’s appointments, family obligations and whatever else rolls around. 

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No matter what limitation I have, Barry and I have adapted our routine around the house to fit my needs. It is all about attitude and what you are willing to do. I chose not to sit down and give up, I-m fighting every step of the way. Also, educate yourself. Know what you are talking about when you see a doctor. There are days Barry and I know more about Cowden’s Syndrome than the doctors we see. Be educated!!!!