May is Brain Tumor Awareness Month

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Thanks for everything you did!

Thank you for everything you do to aid those of us dealing with this daily!  God Bless you all!

Jill and Barry Baynes

Just Write: Raising Mom/ written to post next week, it couldn’t wait! Forgive me please

my momma

my momma

Mom is struggling.
She regrets so much in life
She is worried about her husband, but the home wasn’t safe for either of them to live.
Sleep with a gun on your bedside table, not feeling comfortable in your home or around your husband’s family.
She doesn’t understand why her problem started.
Bipolar Disease and Lewy Body Dementia?
I’m not sick, where did this come from?
The doctors have spoken with her, but her brain can no longer fully understand.
Feels like the old her is slipping away.
Fighting her independence, fear slipping in.
The unknown is scary.
Accepting her daughters and son-in-laws as caregivers and protectors.
Barry and I are helpful and supportive, she doesn’tbknow how to accept assistance or be humble when needed,
This is not the way it should go.
She dreads becoming a burden, even though everyone tells her she isn’t, We also love her dearly.
She feels like nothing is wrong, until the terror sets in at night.
Hallucinations and living out dreams with family long gone.
Should be scary, but she enjoys seeing her visitors.
Mom hates medication, but it is working beautifully. Big improvementd, no more driving.
She’ll adapt, she didn’t need to drive anyway. She used to be a wee-bit scary behind the wheel
Life with mom, our big adventure.

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http://extraordinary-ordinary.net/2011/09/10/just-
write/

For the Week of May 19, 2013: Happy Anniversary

Sitting here, I try to think about what to do with this writing prompt and I am finding it hard to make my decision. There are so many things in my life that could be referenced as an anniversary; but then they should be considered important dates in my life, but I do not see the point of calling them anniversaries. It actually depresses me a little to place that much importance on such painful memories.

If I called any of my memorable pain filled days an anniversary, it would be the day I found out about my diagnosis of Cowden Syndrome and gangliocytoma, a brain tumor. This is the date that forever changed my life. A day I will never forget.   The brilliant neurologist that was chosen to give me the news, was greatly in need of bedside manner training, instead of Shock and Awe Therapy. It has been my experience, that when the news is bad, the doctor has no tact at all or they tell you the least amount of info possible; the worst thing in the world to do is research on the internet. It will only manage to scare you silly. A bit of info goes absolutely nowhere.

I prefer to keep happy things for anniversaries. Maybe I should look at each yearly anniversary of my illness as a good thing. After all, I am still alive and kicking. But I owe that to the Good Lord above. My life is in his hands, he watches over Barry and I. Our faith keeps us going.

This leads me to what I really consider the important days in my life. The day I met my husband (10/31/1998); the date we started dating (12/15/2001); the first time he kissed me ( 01/02/2002); the date he proposed ( 11/13/2003) my 38th birthday; our wedding date (4/3/2004); and then my diagnosis date (2/25/09); saw my neurosurgeon (4/1/2009); and had brain surgery (4/6/2009) five days after my fifth wedding anniversary.

The other dates are just part of God‘s plan for my life. I know when they are because I have to give my medical history a million times in a week. I should know it by heart, but I do have days I cannot remember brushing my teeth in the morning. So I keep a nice, tidy list of medications and medical history on my tablet. Which is a permanent part of my purse. I call it my brain.

There was a time that I felt like someone or something was out to get me. Through the Grace of God, I have handled my latest illness without feeling like a nut job. I’ll explain a little further; since the year 2000, I have gone under general anesthesia 14 times. My tonsils have been removed 2 times (40+ years apart). When it was discovered I had Thyroid Cancer, it took 3 treatments and full body scans to clear it out of my body. (after my thyroid gland was removed); they were unable to fully remove the brain tumor and I am suffering from after effects of the tumor moving around in my head, pressing into cranial nerves. My vocal chords twitch constantly; I have difficulty swallowing; breathing is difficult at times; my left arm and leg are in constant pain;  my balance was affected by the brain surgery, so I have trouble standing and walking. Trust me, you do not want to see me run!

This is not everything, but it is enough to show you that I am depending on my Faith for survival. It has always been my philosophy, that when you tell me I cannot do something it just makes me want to do it more. Helps me yo fight off those feelings of I cannot do this any longer.

If I need to have an anniversary, I think I would stick to April 6th, 2009. Other than my wedding day, that is the date that changed my life. My sweet husband has been by my side through it all. With our wedding anniversary being so close to “The New Me” anniversary, we celebrate through the month of April. Once the weather is warm enough, we plant a new flower in our “Victory Garden”. We spend the.month of April writing each other love notes and planning what to do on our days. Then we choose a plant to enhance our Garden. I’d share a picture if I had a new one. Nothing is blooming yet, thus far. I’ll snap a shot when it starts.

THANK YOU, BARRY BAYNES, for making all our anniversaries special! I Love You to the moon and back!

Mother: Part 2

I was heartbroken to realize mom was crying this afternoon. It breaks my heart to see her cry. She gets confused when she cries.

When I sat her down to talk, I apologized for not realizing she wasn’t feeling her best and asked what the problem was. Mom proceeded to tell me she was upset with herself and didn’t know what to do.

Do to health reasons, mom has recently had to give up driving and gave her car to my youngest sister. If she’s not driving, why carry the cost of a car. Well, this afternoon, when mom went out to gather her tools for gardening and realized she did not have everything she needed, life hit her in the face.

When the thought of her inability to drive hit her, she lost it. She says it felt like her independence was flying out the door. She said she understood and knew it was time, but it would take her some time to get used to the feeling. 

She wanted to go to Wal-mart and realized she could not drive. She said it hit hard and she started crying. When she asked me where she could plant her plants in the sun, I argued with her for asking because I was almost asleep.

Barry helped me outside to go through the gardening spots with mom. We spent an hour outside helping her decide where she needs to plant certain things. Just that hour of time outside with her eased the painful thoughts she was having. Talking it out helped. We talked as we looked for garden spots, she felt better when we all decided it was time to eat.

She is thrilled that, my sister Sandy, is taking her to my nephew, Daniel’s college graduation, next weekend. She was so excited when she told me she was going. Like a big kid going to Six Flags. She got her hair cut, so she’s looking great! Mom likes to dress up and go places. She cleans up well.

I need to check to make sure all of her medications are packed and ready to go. I need to get copies of everything for Sandy. I want her to be set to have a good time. She deserves it.

It is so close to Mother’s Day! I don’t like to see mom upset. Barry and I both are glad Sandy is taking her on this trip. It will do her spirits some good.

Kristie and her family, Barry and I, and now I guess I’ll ask Sandy and Dennis, are taking mom to lunch at the Chinese Buffet in Snellville after church on Sunday. That will perk her up to. She needs to be showered with attention at times. We all love you very much, Mom!

 

Day Two: Post Lumpectomy

MM900178208The drugs have worn off, I’ve started my exercises, and I rode in the car this afternoon. I took a pillow for comfort, but it went really well.

The pain is subsiding, until I move my arm too much. I still have my faithful bottle of giggle pills.   I have drunk so much liquid I feel like my eyeballs are floating. I have to flush all that lovely dye and anesthesia out of my system. The sooner that mess is out of my system, the better. I’ll feel better and I’ll stop resembling a Smurf around the edges. The doctor says that effect will go away in a few days.

The wait has begun. My appointment is on the 10th to get the pathology report and make treatment plans. I’m not worried, it’s in God’s hands. But now that I am more alert, it is on my mind. That simple little report is going to have such as huge impact on my life. It is hard not to think about it.

In between all the hoopla above, my left knee has given out on me and they are injecting chicken cartilage into the knee in hopes of forming a cushion in there to keep bone from hitting bone. So far, it helps for a few days, then the pain is back. It is a series of three shots. I’ve had the second one. If this doesn’t help, they want to discuss a knee replacement. I truly am NOT sure how I feel about that.

Total Knee replacement : AP view (Xray).

Our lives are in God’s hands. He has a plan for us all. We are not to question that plan. We are to be good people and better Christians.

Barry and I study our bibles. We have devotions with one another and we are active at church. Loving every minute of it. Barry and I have discussed that we feel more complete and better about where we are headed than we have in years.

I am finally catching on to the practice of handing things over to God. This breast cancer experience has shown that to me. My stress level has been lower and I have been able to turn my head off and go to sleep at night. Every prior health issue has caused me to worry myself sick. I tolerated this so much better. I’m proud of my progress. I wasn’t sure I could do it.

I’m learning to deal with my illness/disability as part of my life. The new “Jill” is progressing. Took me long enough. I blame my slowness on the brain injury caused by my brain surgery. Is it not awful that you have to cause a “brain injury” to save someone’s life when a brain tumor is discovered. Also, it isn’t like I’ve been a little busy.

I’ve been able to get my exercise regimen going again. Feeling better and walking better. Hopefully this latest health issue will not put a damper on that. My exercise makes me feel better.

The babble is starting, which is my question to stop typing. Have blessed night everyone.

beeani0822

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For the Week of April 28, 2013: Writing as a Spiritual Practice

Through the exchange of stories, we help heal each other’s spirits…Isn’t this what a spiritual life is about?

–Patrice Vecchione, Writing and the Spiritual Life

Writing for me is an outlet to show my true self. Writing allows me to be completely honest with the world and myself. I have become more verbal on topics I would normally hold in to eat me alive with stress.

Recently, I have felt a new strength developing through my writing. I feel my faith has strengthened and I am changing as a human being. I look at the world differently. As a child, I the beauty of the world amazes and astounds us. As adults we have forgotten what a beautiful place we have been blessed with by our precious Lord. It suggests the old saying. “Stop and Smell the Roses”

http://en.wikipedia.org/wiki/Stop_and_Smell_the_Roses

I look at my family, friends and life in general differently. My health has been a huge factor in the changes noted in me. I have been through so many lab tests, x-rays, CAT Scans and MRI’s that you could probably see me glowing in space or find me easily with a satellite. Dealing with my rare genetic disorder has brought patience and tolerance into my life (which are 2 things I was sorely lacking in). I’m a nurse. I once thought I was blessed with the patience of Job until receiving my first diagnosis and my roller coaster ride started. After brain surgery, I quickly learned to dislike the word, Time! I’ll re-post from my blog on ‘Time’.

           ******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 are 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 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 ready 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……….

I have always been a very compassionate person, to the point of being a sucker. Barry’s stroke strengthened my faith and spirituality. When he was healthy enough, we found a church to call home. We are enjoying getting to know the church community and trying to find which ministry we would like to be part of.

My health would be my precipitating event. Since 2000, I have had 3 spinal epidurals; been through a year with a masseuse; a year with a pain management doctor; been through thyroid cancer three times; my tonsils grew back and removed a second time; had brain surgery for a benign cerebellar tumor; been diagnosed with a rare genetic disease that causes tumors to form through my body; lost my gall bladder. had a ruptured cyst in my left breast and am now facing breast cancer. Surgery scheduled for Tuesday.

I have definitely felt the need to get closer to God and learn more about my religion. I study the bible regularly. I have learned more about the Bible in the last year than I ever did attending church as a child. Barry and I read together every evening. We are trying to get through the bible before summertime.

My re-found spirituality has helped me to notice and appreciate the world around me again. My relationships with my family have improved. I love my husband more everyday! I thank the good Lord daily for bringing him into my life.

Barry and I are now taking care of my mother. She wasn’t in a healthy home-life with her husband. When her health started to decline, she moved in with us. It was a bit of a struggle to start, but we are getting used to each other. I have written about the transition we went through when she moved in. It has been healthy for Barry and I to work on the posts together.

In closing, in my opinion writing has changed my life. I look forward to it daily and enjoy planning my post each week.

For this week:  How has writing deepened your spirituality?  Your compassion or insight?  How have faith and spirituality manifested themselves in your life?  Was there a precipitating event?  Write about the prayer that writing becomes, the spiritual journey that writing has helped you discover.