Category Archives: Old Mom

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!!!!

Crazy Thursday

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I would love to be home tomorrow for BrainTumorThursday. Since I cannot be there, I thought I’d share my itinerary with all ofMC900433230 you.

10:00am Barry, I and the girls are going for our first visit with the breast specialist. The girls are having some major issues that freaked my regular gynecologist out, so we get to add another doctor to our list! Yea!

I’m kinda freaked out about seeing a bombom specialist with Cowden’s Syndrome and Lhermitte’s Duclos Disease in the picture, I have to stay on top of health issues. I do not want anything creeping up on me without warning.

After the Bombom doc, we are off to discuss my screwed up genetics with a specialist. I am hoping she can elaborate on this genetic nightmare I am muddling through. I think if I just had a few answers, I’d feel a lot better.

I have been questioning relatives for weeks. I always saw my dad’s side of the family as the healthy side, little did I know they are just better at keeping secrets and keeping things to themselves. I felt so bad when I heard some of the things my cousins have been through.

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I can sum my mom’s side of the family up with a few words. They are heart attacks, strokes, factor five ledium, and arthritis. There have been a few cancers in the picture. My Uncle Bud was the worst. The heart attacks do not play around with us, either. One Uncle dropped dead at age 29 from a massive coronary. Three cousins, younger than me, have already suffered BAD heart attacks.

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It is really scary. Both families look incredible, BUT have survived numerous serious illnesses. I guess I get my will to fight from both mom and dad. I come from family of survivors!

Daily Prompt: Toot Your Horn

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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!

Raising Mom

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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…..

Be Patient

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I hate to do this, but the doctor is patching both my eyes through the weekend. I can’t focus on anything and I’m being told my eyes need a rest.

If I get a post completed, Barry has graciously agreed to do the typing for me. He enjoys it as much as I do. He wants to help keep the blog up. Unfortunately, he’ll be doing a lot of things for me this weekend. I’ll take it easy on him.

Hopefully my eyes will straighten out and I can take things over again at the first of the week. Have a wonderful weekend, all!!

“Life is like a box of chocolates”………

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Watching ‘Forrest Gump’ at the theater, when I heard my title in the movie, I giggled. At the time I was a mere 28 years old and didn’t think past which movie I’d like to see next weekend, or what clothes I’ll wear to work tomorrow, or what to cook for supper that night. I didn’t think about the deep, complex meaning those few words can truly hold.

It wasn’t a good four years later that my marriage ended. I moved back to my hometown and back into the house I grew-up in. I had a second chance at life and I wanted to get it right this time.

There were many things about myself that I wanted to do differently, so I got busy and found myself. In that time, I felt like a piece of chocolate in that box that was different in so many ways, but at the same time you could interpret the meaning a a box full of choices. In that box, I found the changes I felt I needed to make and threw myself in head first.

My work ethic grew. I threw myself out there and made my job my number one priority. It kept me busy and kept my head in a good place. I also ventured away from positions I was familiar with and tried something new. The big suprise was I was good at it and found a new love in the nursing field. I job-jumped for a few months, until I settled into the field of geriatrics, where I stayed until my forced retirement.

*In high school, a couple of friends and I made a list of things we wanted to accomplish in life. My main thing on my list was owning my own business by the age of 40. I did it! It felt so good the day we opened our door to patients. We won an award for our service, but then it felt just as bad to close the doors, when we had to. But we had an incredible six years!*

At age 28, watching ‘Forrest Gump’ , I would have never dreamed I would actually meet my soul-mate and have him propose on my 38th birthday. He’s my soul-mate. My first husband was a good man, we just went in different directions. I’m the person I am today, partly because of my time with him, but Barry is the man I was meant to be with. I am the woman I am today, totally because the love and support of my sweet husband!

As I threw myself into my new job, I forgot about all the other important things in my life. I missed my oldest sisters kids grew up, the next thing I knew they were graduating high school and my baby sister was about to have a second baby and her oldest was starting school. It was time to slow down and make time for me.

I guess what I am trying to say in all this babble is that “Life is like a box of chocolates, you never know what you are going to get” (movie quote: Forrest Gump, 1994)……but it’s your choice, the box is full. Life is too short, make your choices count!

Daily Prompt: Quote Me

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Do you have a favorite quote that you return to again and again? What is it, and why does it move you?

-Follow your bliss!-Joseph Campbell http://www.jcf.org/new/index.php

I have always taken this one to mean ‘follow what you love’. You cannot be happy in life, if you do not enjoy what you do. When my niece and nephews would ask me questions about what to do with their lives, I’ve told them to figure out what they love and go for it. If they choose right, they’ll shine. If not, keep looking until they find what makes them happy. One nephew is a pastor, this choice suits him perfectly. His twin brother is an artist and professional ballroom dancer, he has been showing his creative side since he was five years old. Their sister, is the perfect mother, wife and homemaker. She plans to homeschool her kids, which will be a breeze for her. My sister did a fabulous job with her kids. Of course, my brother-in-law is included in this praise.

-The privilege of a lifetime is being who you are.-Joseph Campbell http://www.jcf.org/new/index.php

I continue with this quote with my younger nephews, who are still young enough to be figuring out who they are and what they want to be. They are both sweet, loving boys; but with totally different personsalities. I’m enjoying watching them grow into handsome young men and I encourage them to be themselves regularly. They will eventually figure out who they are and where they are headed in life. My younger sister is doing a wonderful job with her boys. She is a great mom with many challenges, but they are getting there. Of course, my brother-in-law is included in this praise.

I attempt to apply this one to myself daily. I learned early in life that I am a caregiver. I went to nursing school and worked for over 25 years before we had to close our business. I continue to be a caring, loving individual I have always been. I receive phone calls for medical advice regularly and do my best to give accurate, fabulous advice because I wouldn’t want to steer anyone in the wrong direction.

Even though I may not be actively working, I take care of my mother, my husband and myself daily. Sometimes it isn’t easy to be, the one person in the house, with the best memory. Making all the decisions can be a bit tedious at times. Barry has been in management for over 30 years, he isn’t the easiest person in the world to take being told what to do or how to do something. I am trying every avenue I know to figure out how to work with Barry. I don’t want to argue with him daily when he retires. I have to remember that Barry is only being who he is and that is his priviledge!

Letting things go…..

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Can anyone out there tell me how to do this?

The bible says to give it to God and not to worry.

There are certain things in life that are radically difficult to just put aside and not worry about.

  • Friends, eh, you learn who your true friends are when times get tough.
  • Family will always be family, no matter how much worry they cause, they are family. You love them anyway.
  • A brain tumor diagnosis, a stroke, cancer diagnosis, any life threatening illness that could lead to a major life change…

How do you not worry about things like that?

I do my best to give things to God, but I feel like I struggle daily with this issue. I pray and ask the Lord to strengthen my will and give me the knowledge I need to be able to understand how and be able to turn things totally over to him.

Hopefully the stronger my faith and knowledge about Christ and the bible, will help me find the peace I feel like I am looking for. My support system worries as much as I do.

God, help Barry and I figure out how to give it all over to you. We are your students……