Brain Tumor Issues Again!

Posted on 12/12/2012 by gegebearbear

I’ve been blessed with the fact that issues caused by my brain tumor are constant and tolerable on a daily basis. I suppose that is a good way to put it, but they do have those days when they act like an angry toddler not getting his/her way. Well the toddler has been a little rascal for over a week now.

Not only is my heart acting like a fool, I feel like my face and top of my head is attempting to learn the tango. A few months after my craniotomy, I developed a facial tic which grew into making every muscle from my shoulders up, twitch uncontrollably. The neurosurgeon said he could operate and make me worse or I could try medication management. We chose medication management. I have been through a battery of medication that actually gave me some relief, others made me close to crazy or mean as a snake.

I finally got on a regimen of drugs that actually made life easier, then they sent me for a Botox referral. Botox helped my neck muscles, but it did not do much for my vocal chords. At one point my vocal chords were twitching over 200 times a minute. I could barely talk, but I missed singing more than anything. My voice disappeared for 3 months, instead of getting stronger. It was amazing to be able to sleep on my stomach for the first time in 2 years. I honestly did not realize I couldn’t turn my neck to the side. It was great!

Off to the Otolaryngologist(spelling?). He does the Botox in my neck and vocal chords. Friday afternoon, I get the pleasure of Botox injection into the roof of my mouth for palatel myoclonus (spelling?). Apparently, this might not only fix my twitching palate, it might fix the ear trouble I have experienced since surgery. We’ll see.

I truly am not looking forward to it, but the Botox has helped in the past. Otherwise, I’m headed back to let my neurosurgeon make me worse……I’m not ready to cave-in yet

The case of the “unknown pants”…………

Posted on 12/10/2012 by gegebearbear

pYou have to understand, we live in a house where three people with memory issues reside. Maggie, the dog, has a best memory in the house. I cannot figure this one out. Just wish we could figure this one out.

When arriving home from church, yesterday, I discovered a strange pair of pants lying over a dining room chair. They were a medium gray pair with a white pinstripe. We had no visitors to match these pants and we could not discern how they came to be in our dining room. All of the doors were locked, all windows closed tight, and Maggie did not appear to have had a mid-morning snack. Yet, here they are and how did they get in the house?

Barry denies knowing anything about the pants, other than they did not belong to him. The pants were not meant for a tall man, Barry is six-foot tall. These pants are meant for a munchkin. To my knowledge, there have been no munchkins in the house. Is Maggie throwing neighborhood parties when we aren’t home? She does open the doors by herself when she really wants in a room, or out. I’m writing this and haven’t got a clue where they came from.

Mom says she is not positive, but she doesn’t remember any visitors leaving without their pants. Mom is probably the culprit. She does minor alterations for people. But swears she knows nothing.

In a house full of people with memory issues, what do you do when something like this happens? Just another example of the mysteries of the human brain. How else can you explain this?

December 2011

Posted on 12/09/2012 by gegebearbear

Today, this second Sunday in December, was difficult to get through. At the same time, it has been a joyous day! The love of my life suffered a stroke that should have taken his life, but through the grace of God and the miracles of modern medicine he is still by my side and we are closer now than ever before. Enjoy and make the most out of life because you NEVER know when you will be called to glory. Time is truly a precious gift from God. Barry and I have both been through a lot since 2009, but we are still here and still going strong.

Last year, at around 8:30am, Barry was assisting one of our residents with his morning care. The resident called for me to come quick. I got in the room and Barry said in a funny voice, “Honey, I can’t get up, help.” I leaned over to grab his arm, when I realized he couldn’t grasp my arm, I quickly told him to stay put and not to move. The thought running through my head, was “‘you’re the strong one, Barry….You cannot be having a stroke!” I knew he was, but that thought would not leave my head. I called 911, checked on him again and went to get his medicines.

Gwinnett County EMS was on top of it that day, they were there in a flash and my heart sank as I watched them drive off with my sweety. I knew I’d never be able to drive, so I had called my sister to give me a ride. She was 20 minutes away. She made it in record time. My head was racing with all sorts of things that I could not shake. I was crying then as I am crying now telling this story. The local ER was on the ball and had Barry ready for transfer when we arrived, Kris and I attempted to keep up with the ambulance, which was impossible, so we decided to be safe. At the next hospital, Barry was already on the table having the “Mercy” procedure performed. True to the doctors words, Barry was regaining use of his left side within 12 hours.

One year ago, I got the opportunity to fall in love with my soul mate all over again. The stroke took Barry’s filter away. He’s adorable and we are enjoying rediscovering each other all over again. I love him dearly and do not know what I’d do without him.

This really happened….

Posted on 12/08/2012 by gegebearbear

Anyone keeping up with us is aware that Barry and I had to close our business. We were not able to handle the patient care once Barry had the stroke. I was attempting to keep the business going with part-time help, but once we both were incapacitated to a certain point, we had to make the tough decision of closing.

We decided to tell the resident’s on an outing. It will be an outing neither of us will ever forget. We went to Wendy’s for burgers. Our staff person and I sat the residents down and started numerous trips back and forth to collect napkins, ketchup, forks, salt and pepper. Barry went to place the order. Barry got my attention and pointed toward the tables.

When I turned around, two of our four residents had opened their straws and were sipping ketchup from the little souffle cups Wendy’s supplies for ketchup. Everyone in the restaurant had turned and were stating at these two. What do you say? What do you do? I walked over to the table, sat down and quietly asked them to put the cups down. I told them their meal was being prepared, to have a little patience. They thought that was part of their meal. It was, but it didn’t need a straw……

The human brain is an incredible, as well as, strange organ. Through my years of nursing, I have witnessed many outrageous and many marvelous things. After 20 + years of nursing, I never would have put myself in this situation, but I can understand/sympathize with things I have witnessed over the years now. This brain tumor has truly opened my eyes to the world around me!

We found time for ourselves….

Posted on 12/08/2012 by gegebearbear

Last night Barry and I were scheduled to help setup for the Christmas Program. To our bewilderment we found ourselves with an evening of free time. We were both exhausted and actually a little thrilled to have “us” time. We rode around for a bit looking at all the beautiful Christmas decor (there are some incredible imaginations out there) and headed home. We did a little housework, said goodnight to mom and got in our favorite chairs in the living room.

Once vegging-out in our chairs, checking a little email, I was sound asleep with my tablet in my lap. Sometimes “taking time for you” means listening to what the body is telling you. In our case it was Sleep, glorious Sleep. We both needed it, we have a long weekend scheduled.

Christmas Programs everywhere……

Posted on 12/07/2012 by gegebearbear

The holidays are here and they are hitting like a runaway locomotive. Barry and I missed everything last year, he was in rehab after his stroke. We wanted to get in on as many programs as we could this year.

December 1, will strolled through Loganville Baptist Church’s version of “Journey to Bethlehem”. They did a wonderful job.

December 2, we got to see our great niece, in her churches kid’s Christmas program. We learned she is quite a little entertainer and loves a microphone. Absolutely adorable 3 year old.

December 6, we went to another nephew’s band concert. I was amazed by the change in music or a better way to put it is, the way the band put together their performance. Absolutely amazing.

December 7, we will helping set up for our church’s Christmas program. Barry and I have been on a treasure hunt the last few weeks for this program. It is exciting watching it come together.

December 8, we will be attending a Christmas Play with my oldest sister’s church and some of our family.

December 9, will be the program at our church, with a possible encore the following Sunday morning.

December 15 is the Christmas Party for the ladies group at our church. Mom and I are responsible for decorating a table. Busy making plans for that.

On a yet to be determined date and time, our family will be celebrating the holiday! Along with a few more stops on the Christmas Express, but Barry and I will survive…….God will get us through it all, after all…it is His season!

Things I can’t do anything about

Posted on 12/07/2012 by gegebearbear

Sticking with the roller coaster theme, I guess it is time for another ride. Life appears to slow down and let you relax and then you remember or life smacks you with something else you have no control over:

1. having a brain tumor

2. having a rare genetic disorder that wrecks havoc on your body daily.

2. what is going to happen next.

3. your social life involves more medical professionals than actual friends.

4. With Cowden’s Syndrome, you never know what body part will go nuts next.

5. what doctors do with the list of medication they take from you at every visit. Do they ever look at it?

5. What reaction to the new medication the doctor puts you on

6. which doctor’s office your reaction to medicine will land you in

7. where you’ll end up after having a test to determine the cause of a new issue

8. what will come out of your husbands mouth at any time

9. what your mother will lose next

10. when your family will realize you are still inside a body that does not function properly

11. when your mother will stop looking at you as if it is the last time she’ll see you

12. whether your eyes will function properly when you wake up

This list could go on and on, these are just the ones that have frustrated me, beyond my limits, lately. I’m hoping the tides turn soon.

Brain Tumor Support Group

Posted on 12/06/2012 by gegebearbear

The first Thursday of every month is good for our spirits, and has truly helped Barry in finding the “New” him. The fellowship with people, who are dealing with more than any one person should ever have to. It is a great relief to not feel alone in this battle we are trekking through.

The staff that run the group are kind, loving and compassionate. They do a fabulous job to keep us informed on new research and news out there about research. They plan very informative programs for us on everything from sex to legal issues. They have focused on Holiday Stress the last few meetings, very helpful.

What next, part 2……..

Posted on 12/05/2012 by gegebearbear

Well, echo scheduled for next week. Had blood work drawn at office. Hopefully, all is well, my heart just doesn’t like what my neurologist is doing to my body. My body doesn’t like taking a bunch of pills, I always manage some form of adverse reaction to medication changes. Life goes on, time will tell (and the tests too, of course). One day at a time, the only way to go….It’s in God’s hands

What next….