Monthly Archives: January 2013

Daily Prompt: Apply Yourself

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Describe your last attempt to learn something that did not come easily to you.

My mother makes the lightest, fluffiest biscuits I have ever had. She makes them like her mom did and she made them like her mom. I don’t eat bread these days, but I recently asked her to show me how she makes them one more time. If I cannot get it right this time, I’ll probably give up.

√ Preheat the oven to 350°.

√ We started with a large bowl with a mountain of flour in the center, I do not remember how much.

√ I put my fist in the top of the mountain to make a hole.

√ In the hole, you pour your buttermilk and oil.

√ With clean hands, you slowly start to fold the flour into the hole with your fingers. You continue this process until you have a big ball of dough sitting in your bowl.

√ Next you pinch off pieces of dough and roll them into the shape of a biscuit. Do this until your dough is gone or your pan is full. 

√ Bake at 350° until golden brown.

Over the years, mom has taken me through these steps time after time. I make a killer pan of cornbread, but every attempt I have made at biscuits, has been a useless waste of time. They come out of the oven looking like biscuits, but……

It is pretty bad when your dog will not eat them. The truly sad thing is, that they are always so hard, that you could play softball with them, break a few windows, knock someone out cold. The army could probably use them for some sort of new weapon.

Whenever I need to take biscuits somewhere, I have to sweet talk mom into the job or by the frozen ones at the store.

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.                    

purplebutterflypurplebutterfly

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.

teddybearline

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. 

fishy

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. 

bearkiss2

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.

beeani0822

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.

exercise1

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. 

funnyladybug081906

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!!!!

Daily Prompt: In a Crisis

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Honestly evaluate the way you respond to crisis situations. Are you happy with the way you react?

After 26 years of nursing, I react the same way to any emotion evoking situation. No matter what the situation, crisis or otherwise, I am always cool as a cucumber.

There are only a few exceptions to which I will lose my cool, the main one is when the crisis involves a close family member. When Barry had the stroke, I was on top of the situation until help arrived and then I lost it. I couldn’t drive myself to the hospital.

The second is if the “Chipmunks’ are on the movie screen, I have a tendency to burst into tears. I do not understand this one at all, but hey…..it happens!

As a trained professional, am I extremely happy with my reaction to a crisis. I think my reaction over a close family member is perfectly normal and I cannot say I should act any other way.

As far as the ‘Chipmunks’ thingy, I haven’t got a clue…..other than they are just so incredibly sweet and absolutely cute as buttons. How can you not get emotional over something soooooo sweet……???? 🙂 🙂

Crazy Thursday Update

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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!

Crazy Thursday

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MM900234673

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.

MM900283822

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.

  • MP900433140

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!

Stuck between a rock and a hard place!

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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!

Daily Prompt: 1984

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You’re locked in a room with your greatest fear. Describe what’s in the room:

As I sit here trying to determine what my greatest fear would be, I think of where my life was in 1984. My fears then are incredibly different from today. I wouldn’t like being locked in a room, period. Wait, it just hit me how to write this up.

I’m in my favorite chair, in the living room at my parents home (since I was a mere 17 years of age in that year), I’m reading a mystery. The door to the kitchen is to my right, the couch is against the wall to my right and the door to the front yard is in front of me. The fireplace is to my left. There are windows  to each side of the fireplace. The television is between the fireplace and the front door. The laundry room door is to the left side of my chair. The ceiling fan is bustling above, moving just enough air to keep the room from being stuffy.

My fear is sitting on the screen of the television, a good twenty feet from me. Sitting on the screen of the television is a tiny, harmless, dinky spider. In my mind it is enormous.

It is just sitting still, not moving an inch.  My mind is telling that is the largest critter on earth and it is staring at me, waiting to attack. I’m feeling like a mid-morning snack.

A prickly sensation is running all over my head and the back of my neck feels like every hair is standing at attention. I break out in a cold sweat. The spider is just sitting there. I slowly stand up and attempt to get up the step to get into the kitchen, but the door is locked. That door isn’t supposed to lock. I do not understand. I can’t get near the front door, it is too close to that spider.

I sit still and just continue to read my book. Someone will be home shortly and let me out of here. They also have to get that nasty creature off the television.Cuz, I ain’t touching it! 🙂