Category Archives: The “New” Jill

My Brain Tumor is ruling my body today!

Posted on by

MM900234673

To start the day off, I woke up a grumpy mess. Barry and my left arm told me why I was so tired this morning, when I got alert enough to listen.

Apparently, I spent the night hitting the wall, bed, myself and Barry, all night. My arm hurts so bad this morning. I also managed to bloody my nose last night and I have bruises on my forehead.

My left hand isn’t bruised yet, but it sounds and feels like it shoud be. Barry told me the dog wouldn’t get in the bed with us last night, so I was scaring my poor puppy during the night.

The morning did not get any better, my balance is terrible and my right hand is even shaking. My head feels like it will blow off at any second and the pain is radiating from the base of my skull, where the tumor is.

My eyes are somewhat focused, but a took a lot of exercising to get them there. It was mid-morning before I could focus. I took a nap, that hasn’t helped. Drugs and more sleep are next.Also a call to the neurologists office.

I probably will go crawl back in bed and hope this is gone tomorrow. I cannot stand when that dyuiiufdfv tumor takes over, I scare my husband. Since the stroke, he’s more sensitive and I hate he has to deal with me like this.

I should have known something was coming on. I spent yesterday stuck in giggle mode. Why couldn’t I get a day or two more of that. Everything was funny yesterday. I need to make sure I tell the neurologist’s office when they call.

Day Dreamer Award

Posted on by

My Gift to the wonderful bloggers who have Gegebearbear is

THE AMAZING DAYDREAMER AWARD

This award has very simple rules:

1) Upon receipt of this award, you are to take a mental vacation for five minutes. Gaze off into space, look out of the window, have yourself a wonderful day dream.

2) When you have returned from your day dream, you are required to take another one tomorrow.

3) Lather, Rinse, Repeat.

4) Award this to three (3) people. You can only pass on this award to three (3) people only.

To accept this award you are required to have a daydream a day. You will always feel better after a good daydream!

Many thanks to Thomas for this rules text.

May all the following Nominees have much fun following these rules:

http://xbrittx13x.wordpress.com/

http://aboutthechildrenblog.com/

http://notyourdirtyunderwear.wordpress.com/

Thanks to Tomas of heartflow2013 for the nomination and support. You are the best!

Daily Prompt: Sliced Bread

Posted on by

Most of us have heard the saying, “That’s the best thing since sliced bread!”What do you think is actually the best thing since sliced bread?

MM900354584

At first, I was going to say the Bible. It is one of two things that I can count on using daily. I realized more than likely,  the Bible has been around longer than sliced bread, so that kinda put it out of the running.

Of course, I’m not sure whether anyone sliced bread in the Bible or they just broke pieces off. I’m a constant student of the Bible, but I am afraid this is one thing I cannot quote book and verse on. 

According to Wikipedia: 

Sliced bread is a loaf of bread which has been pre-sliced with a machine and packaged for convenience. It was first sold in 1928, advertised as “the greatest forward step in the baking industry since bread was wrapped”.[1] This led to the popular phrase, “the greatest thing since sliced bread“.

I refuse to say that the cell phone was my second choice and they, in my opinion,  are definitely not the “best thing since sliced bread”. Although, they are handy. We would all live without them! Yes, kids, you can live without your cell phone. Believe it are not, you can actually have a conversation with another human being. 

My personal opinion is that current medical technology qualifies as ” The best thing since sliced bread“. New innovations in every field of medicine improves the life of numerous people daily!

Barry and I are both still alive today, by the Grace of God and modern medical technology. I would have lost Barry twice  if someone hadn’t figured out how to replace the aortic valve and how to go into an artery of a patient, actively having a stroke, to manually remove the clot and stop progression of the damage that a stroke causes. 

The brain tumor I have was only diagnosed at autopsy before 1985. I thank God for giving someone the knowledge to invent the CAT Scan. I’m ready to take my place in heaven when the time is right, but for now I plan to enjoy every moment of life. Good or bad…..

Daily Prompt: Musical

Posted on by

What role does music play in your life?

MM900188333MC900432548

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.

MC900432548 MC900432535

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……..

To All My Faithful Readers

Posted on by

Please forgive the housekeeping issues I have put in place. Have patience with me for a few months and I’ll take the restrictions off. I had an issue I became unhappy with and I felt it necessary to safeguard myself and the comments you all leave for me. I maybe absent from commenting and posting for a while, but this incident had made me realize I need a break. Gonna work on my novel. Who knows, maybe I’ll see you in a bookstore(if they still exist when I get finished). Have a great month!

Find your Voice

Posted on by

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!

 

 

Insomnia versus Zombie-head

Posted on by

clip-art-sleeping-690347

I have no trouble taking a nap during the day, but I have been up doing housework, running errands, shopping, and/or exercising.Most days, all the above. I get tired easily during the day.

As the day comes to an end, I cannot turn my head off to save my life. My sweet hubby is next to me sawing logs. The dog is at our feet snoring in tune with Barry. Hear I sit, typing up a storm. The universe does not seem to be lining up for me tonight.

You’d think with some of the medication I’m on, I’d be zonked out cold with everyone else in the house.  Mom is even out for the night.

Dad has trouble sleeping, as well as both my sisters. I usually can nod right off, but not tonight.

I had an adverse reaction to one of the drugs I was on and of course, my brilliant doctors have decided to play with my medication again. I call my neurologist brilliant, because he told me he is and that I’m lucky to get to see him.

I can’t wait to see what he wants to replace it with. Baclofen was working wonderfully and my brilliant neurologist wanted to see what would happen if I came off it. I was back on the drug within a month, but now suddenly, my lower extremities resemble those of an 80-year-old woman.

I truly do not like taking the drug, but it took some of my pain away and didn’t give me ‘Zombie-head’. It had other side effects that were pretty miserable.

Now they will be looking for a substitute. I guess this is just part of the plan and I do not need to question it. I need to take one day at a time, read my Bible and pray for patience. A few sleepless nights won’t hurt my too, too bad. After all, I can stay in bed all day if I want.

A Little Girl’s Red-Fringed Boots

Posted on by

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.

14554939-single-pair-of-red-rubber-boots-isolated

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!

Living with a Rare Genetic Disorder Part 2

Posted on by

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

Posted on by

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!!!!