A Little Girl’s Red-Fringed Boots

Posted on 01/20/2013 by gegebearbear

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?

Posted on 01/19/2013 by gegebearbear

The 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

Posted on 01/18/2013 by gegebearbear

Huge 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.

Primary Care Physcian

Neurosurgeon

Neurologist

Neuro-oncologist

Otolaryngolosist

Neuro-opthamologist

Opthamologist

Orthopedist

Chiropractor

Endocrinologist

General Surgeon

Gynecologist

Gynecologist-Breast Health Specialist

Geneticist

Dentist

Oral Surgeon

Gastroenterologist

Psychiatrist

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

Posted on 01/18/2013 by gegebearbear

My 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.

purplebutterfly

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.

Dr. 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.

Within 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.

It 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.

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.

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.

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.

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.

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.

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!!!!

Crazy Thursday Update

Posted on 01/17/2013 by gegebearbear

For the time being, the bombom doctors says I’m doing great. Going to schedule an ultrasound and MRI just to be safe. Also get me setup on a routine schedule for MRI’s and such. Sooooo, me and the girls are okay for the moment! Yeah!!!!

After telling her all my family secrets, the geneticist is positive by blood work will come back stating that I do have Cowden’s Syndrome. My previous diagnosis was based on the fact that I met most of the diagnostic criteria, without the test. At least I’ll have proof that my genetic nightmare is real.

The geneticist was particularly fascinated with my big head. It was kinda strange having my head measured over and over. I believe she has answered a question that has puzzled me for years. I don’t like hats cuz I cannot find one to fit my big head!

This is not going to change me! I plan to continue being bull-headed and fight this mess every step of the way!

Daily Prompt: Toot Your Horn

Posted on 01/16/2013 by gegebearbear

Most of us are excellent at being self-deprecating, and are not so good at the opposite. Tell us your favorite thing about yourself.

I can give you numerous incidences of my many mishaps in life, but writing down what I have done right, is a different ballgame.

I think if we all took 5 minutes out of our day to write something good about ourselves, self-confidence everywhere would improve. Mental Health Clinics everywhere would lose business.

Now give me a sec to figure out how to toot my horn. This first one will sound a little strange, but it’s true. Those of you who know my blog, know my story.

I drive better than I walk.
I say what is on my mind, I do not play games.
If you tell me I can’t do something, only makes me want to do it more.
I love the Lord, studying the Bible and learning more about the Gospel of Christ.
I’m good with plants.
Improve the springtime.
I believe in love, marriage and the whole fairy tale.
I have a brain tumor that is a symptom of a generic disorder, called Cowden’s Syndrome. I do not let this effect my life. I live a happy, full life and intend to keep it that way until I can’t do it anymore!
I’m good with kids
I’m good with animals
I’m a great cook, without a recipe
I’m crafty and creative
I consider myself intelligent, but my brain tumor can get in the way
My husband knows I love him because I show him
My family knows they can count on me for whatever they need no matter what. Even though I have screwed things up with my older sister, I’d be there in a heartbeat if she needed me.
I adore, Maggie, my dog-child.
I am good with geriatric patients
I’m an excellent nurse
I know my way around a computer and I love learning new things.
I love studying birds
I love to sing, but I only sing in church and the car for now. I don’t want to scare anyone with what the brain tumor has done to my voice.
I still blush at the drop of a hat.

My favorite thing about myself, is that I love elderly people. I have spent 25 years as a nurse and have always gravitated back to the geriatrics field. My husband says this is where ‘I shine’.

The elderly are a fascinating group of people. I have worked with a stewardess that was on the first plane to ever land in Figi, a woman that was one of the first law enforcement officers in our state, an author, an artist, a woman who helped pioneer one of the largest charity organizations in our state,a comedian and many others that wrote just hardworking people that watched this country grow into the force it is today.

OK, ok , OK enough about me. I hope this is what the daily prompt was referring to. Otherwise, I’m just ranting again. I hope you enjoy reading this yourself!

Stuck between a rock and a hard place!

Posted on 01/15/2013 by gegebearbear

Let’s just say, I was stuck I’m my very own metaphor this afternoon. With the exception of a rock, my dilemma involved my favorite chair in the living room.

Barry was on a grocery store run, while I did a little reading. It was nice and quiet in the house, so I started to fall asleep. As my snooze was getting good, I started to slip down in the chair and the ottoman started to roll away from my chair. A few moments later, I was wide awake and realized I could not move.

The ottoman was stuck where the rug started. The rug had started to push up and the ottoman was hung. I was positioned with my weak side up, I’m strong on my left side, but it is pretty useless trying to push or pull up.

I struggled with it for a bit and gave up. Mom was home, but she was behind two closed doors and could not hear my call, soooooooo….I got comfy and waited for Barry to get back. Not sure how long I was in that position, cuz I fell asleep.

Barry came in, laughing as he helped me up. He wanted to take a picture, but I threatened his life. Maggie thought we were playing a game. She was squirming all over the place and licking everything she could get too! What an afternoon!

Raising Mom

Posted on 01/13/2013 by gegebearbear

At this point in my life, I never thought I would be taking care of my mother. It is what God has led Barry and I to do, so here we are……raising mom.

She was in a situation, at her new home, that was not a safe. James, her new husband, I say new…..I should have said her husband of four years.

The home he provided was not the best place for her to be. I will not go into details about the situation, but let’s just say mom needs to be with us, than her husband.

Having mom move in has been an experience. She acts like she is afraid of Barry and is trying to raise me again. She treats me like I am ten years old, not 47.

Having her around, has been amusing, as well as a huge challenge. Mom is a breed of her own. She believes in being treated right and will quickly let you know if she feels if she has been wronged.

I’ve written several posts about mom’s exploits, but believe me….I have only written about the tame ones.

One of my many lessons, since she moved in, was on how to freeze pork chops. Needless to say I have had my kitchen for over 20 years. Guess what? I was doing it the right way! As Gomer Pyle would say, ‘Surprise, surprise’!

Mom and I share a love for gardening and houseplants. I discovered my plants were not looking well and I could not figure out the problem. I found out, Mom trying to helpful, had been watering my plants too! I know, I know…she was just trying to help. There are certain things I am totally capable of doing is handling my plants. After throwing out the plants that were not going to survive and re-potting the others, I am now the only person watering them!

Mom and I sat down and went through the household chores and I have asked for her assistance with a few things and she knows that I will let her know if I need more help!

I have to admit, I love having help with the laundry. I hated laundry before becoming disabled, but I simply adore finding cleans clothes in the closet when I need them. So does Barry.

Mom’s memory is declining, ask her she’ll tell you there isn’t a thing wrong with her or her memory. She is overall in better shape than most people we know.

She doesn’t drive after dark any longer and I set her medications up for her by the week. She wasn’t handling them well. Mom can think at times that she is a doctor and will decide which pills she needs and the ones she doesn’t. I settled that issue and just started doing them for her, hint, hint….

If she needs directions, we get them for her. If I need to go with her to an appointment, I go. Our biggest problem has been her adjustment to living with Barry and I, as well as our adjusting to her.

Mom does not know what the word quiet means, nor does she know how to be that way. I am beginning to think she likes to hear herself talk, because she never STOPS! There is always this constant chatter.

I have a huge family and mom always seems to go on for hours about relatives, never heard of in my lifetime. She can’t find her keys, but she remembers all of these people. After numerous head butts, she is starting to understand that she needs to be a little quieter and not to talk as much in the car.

I enjoy the time I have with her in the mornings, when we first get up. She does all the talking while we watch the news. I’m starting to believe she corners me in the living room on purpose at that time of day. It takes an hour of waking up for my voice to wake up, so I get the pleasure of hearing about her crazy dreams. There are times that it is hard to distinguish whether she is describing a dream or a hallucination.

This morning was a little strange. The first thing she asked this morning was if ‘we had seen it?’. When questioned further, she was talking about a little girl in a rocker floating around house. How so you respond to such?

If I can get mom and Barry on the same page, things would be copacetic in the house. Barry doesn’t like her un-nerving me and questioning everything we do. She is also having to adjust to the ‘New Barry’. My life would more stability if those two could figure each other out. It’s in God’s hands, I’ve been praying…..