My brilliant Doctor, part 2

Posted on 02/13/2013 by gegebearbear

I must tell you about yesterday at the beautiful Emory Campass in Decatur, Georgia. The neurologist report was actually good. He has finally learned that I am sensitive to medication and did not go off on a wild tangent trying different drugs.

I was actually so happy. It was the first time since 2010 that I received a good report from this guy. I could have kissed then cute little old man. Just adorable.

Then, came our second appointment for the day and those words no woman should ever have to hear. There are 2 areas showing on the right side. We are unsure of what one is, but the other appears to be cancer. We need to do a need to do needle biopsies as soon as possible to get some answers.

We added this to all the other treatments I have scheduled through the next month. I only have a few scheduled: close neck ultrasound, kidney workup and ultrasound, MRI of the brain, MRI of left knee with possible surgery, MRI of breasts, and now needle biopsies in right breast. I have a busy month of probing and proding.

Would anyone like to change places?

Daily Prompt: Call Me, Maybe

Posted on 02/06/2013 by gegebearbear

Describe your relationship with your phone. Is it your lifeline, a buzzing nuisance, or something in between?

When cell phones first came out, I hated the things. They were big, clunky and more expensive than they were worth.

Next, I landed a job that required I be on-call 24/7. To start they provided pagers (some of you younger people may not know what that is). They were a bigger nuisance, because of stopping at pay phones and keeping up with change. I hate change!

Cell phones were still toooooooo expensive.

Over the years, as technology improved cell phones became less expensive and so much smaller! But, they were still expensive. One month, my stepson’s bill alone was over $1000. He’s lucky to still be with us.

Now that prices have stabilized and phones are more convenient. I believe I only like my phone because it is a necessity. Being disabled, I feel more comfortable, being out alone. If my car breaks down, I can call for help. There’s a GPS on it, if I get lost and tons of games to keep me busy if any of the above happens.

I guess I will go with something in-between. I’d rather not have to keep up with it, but there are times when I would totally consider the thing a buzzing nuisance.

I never want to be put in the class of people who considers a cell-phone a life line. Will our future generations be able to talk to one another? Or write a letter, note or list if they need to? Consider me old-school or just plain old! I do not care, the convenience aspect of a cell-phone is marvelous. Everything else can be considered a buzzing nuisance!

Daily Prompt: Sliced Bread

Posted on 01/27/2013 by gegebearbear

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?

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…..

Find your Voice

Posted on 01/22/2013 by gegebearbear

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 01/21/2013 by gegebearbear

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.

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!!!!

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!

Time Reblogged…….

Posted on 01/07/2013 by gegebearbear

******This is a re-blog. I felt it was appropriate to post it again, cuz that old dislike is the word ‘Time’ is coming out again. I have something go wrong and I feel like crap-ola. All the doctor’s office can say is give it time, they will come in. I truly do not like being in this position. One thing has changed since I wrote this, I have been reminded that I am not supposed to worry about things. I need to put it in God’s hands, he is in control. So much has gone on since 2009, I had kinda forgotten that huge fact. I am actually beginning to feel more at ease about my illness. I do not like getting worse, but I have to remember, I’m just getting closer to him. Honestly, being able to give a little of this worry up is wonderful! I’m loving the peace!*****************************************

I learned to hate that word several years ago. When you are healing after anything to do with the brain, everyone’s favorite thing to say is ” Time, just give it time.”. I do not know about anyone else, but both Barry and I can be a tad impatient. Time is a word impatient people can’t stand.

I have to admit that I enjoyed paying Barry back with a few time comments. You have to understand my husband’s quirky sense of humor. I know he thoroughly enjoyed telling me “Give it time.”. He smiled and giggled a little too much after saying it. I turned it around and now use it on him just a little. I tried to hide my snickering.

Ok, well down to the news I need to share. My visit to neuro-oncologist was quite informative. He gave us more information than we have ever received from other doctors. He confirmed that I do have Cowden’s Syndrome. With my medical history, he doesn’t feel the blood test is necessary. He is scheduling an MRI of the brain and a full body PET Scan. He says he hopes they are both negative, but to be prepared for the possibility. Said it could be as simple as the thyroid cancer not being totally removed or something else manifesting in the neurological symptoms that have been popping up. Here we go again with that word, TIME! Barry and I are praying and giving it to God. If it’s meant to be……….

Emory’s Brain Tumor Support Group

Posted on 01/03/2013 by gegebearbear

MkI will not be able to participate in BrainTumorThursday again this week due to the Support Group I attend monthly. The group meets the first Thursday of every month.

There is a guest speaker on a variety of topics. I am enclosing the link to the Group’s Page. You can follow the link to Emory’s very informative internet site.

http://www.neurosurgery.emory.edu/BTSG/index.htm

The group of people who attend regularly are fantastic, energetic, optimistic and simply just a great group to see once a month. They really lift your spirits and are very encouraging. The staff at Emory are a hardworking group of professionals attempting to keep us up to date on current research.

Two Rights Attempting To Make A Left!

Happily married couple taking one day at a time to reacquaint with one another after surviving several life-threatening illnesses!

Tag Archives: Lhermitte-Duclos Disease