In our earlier post, we stated we’d try to get a post in a week. Maybe more. According to how our day goes! Between radiation treatments, Barry’s doctors appointments and our energy levels; we are lucky to get anything posted. Have patience. I have taken pictures and written posts while sitting around the hospital. A lot of interesting things go on in local hospitals! Just wait……
The doctor has decided that my left knee needs replacing. At the moment my left leg is swollen from the ankle up to my hip. I look like I have a cankle. Since my brain tumor surgery, I haven’t been light on my feet.
The falls I have taken, since brain surgery really screwed up my balance, ha done a job on my left knee. I’ve been incredibly lucky and only ended up in the emergency room one time. I had forgotten how bad getting stitches hurts! But all the falling has taken care of any useful cartilage in my knee.
With the breast cancer, I’m still waiting to hear which treatments I will be getting. So, I am sure knee surgery is going to have to wait until after my treatments. I’m making a list of questions, for both doctors, I need to add that to both list.
This is crazy, I’m putting my health issues in a que to be handled in order of importance. Cowden Syndrome strikes again!
Wednesday afternoon, I am having a cyst removed from my right wrist. I’ve had wear a cast a few times when the cyst was enlarged. Apparently to get it to stop, it needs removing. My right hand is my only good hand. I need to keep it in shape as long as possible. I’m not looking forward to a cast or brace again, but I’m a tough cookie. I can handle it! Wish me luck!
- Sleeping After Back Surgery (plushbeds.com)
- Diseases, conditions that cause knee pains (trinidadexpress.com)
- My Young Teacher (beatingcowdens.com)
This is a continuation of our post earlier this week:
That sweet little boy at the Birthday Party, looking and hoping he could find more presents hidden within the gift wrap piled on the floor. He was frantically searching; he was positive, he would find one more present. he was showing he had total faith in his situation. His thoughts alive with the feeling of hope. He just knew he would find one more present. So adorable searching.
Before we had wrapping paper all over the house, we got a bag and played gift wrap basketball. Making a game out of the cleanup, let him see there were no more presents. he was able to focus on the gifts he received and the house full of people who came to celebrate with him and his sister.
Hope covers many aspects of our lives.Dealing with a serious illness brings hope into your life in several ways. you hope the illness will not get bad, you hope to live through whatever illness you are going through, you hope your families will be there for you and not change their minds as you get worse, you hope the people you have called friends for years will be there when you need them.
There is so much hope involved in illnesses. It is hard to deal with hope, when you are fighting so hard to stay healthy and you find yourself surrounded by people you cannot count on. You need to remember that God is always there. Giving your troubles and burdens to God must be done with total faith, then we can continue our walk in life with the assurance that when trouble comes; we know God is there and that whatever the new trouble is,God is never surprised, for He is with you.
Therefore will not we fear, though the earth be removed, and though the mountains be carried into the middle of the sea. If your faith is not strong, we lose hope and start looking for a quick fix.
Psalm 46:1-God is our refuge and strength, a very present help in trouble
Psalm 31:24-Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord
Psalm 33:18-Behold, the eye of the Lord is upon them that fear him, upon them that hope in his mercy;
Psalm 33:22-Let thy mercy, O Lord, be upon us, according as we hope in thee.
Psalm 38:15-For in thee, O Lord, do I hope: thou wilt hear, O Lord my God.
King James Version (KJV)
It is that faith, is our Hope and knowledge that God knows when we are on this rocky bumpy road, and holding that faith is when God puts his loving arms around us and smooths out the road ahead.
Though we may never know the why, but really do we need to know, because this is where we gain Wisdom as we talk to God and, no matter what comes our way, you know God will see you through it.
Through my illness, I have struggled with worry, stress, and anything else that made me worry. It wasn’t until I started praying for hope, mercy and understanding that I was able to but my health in God’s hands. I recently went through a breast cancer ordeal that I had no worries about I knew it would be ok. God was doing the hard work for me.
I am currently struggling with another issue. I am handing it over to the good Lord tonight hoping he can lead me in the right direction with re-motivating my partner in crime, I’m wearing my husband out. Barry suffered a stroke a few years ago and is doing wonderful, but he’s worn out. I need to see what I can do to give him a break. We both need a break, but that will have to wait a little longer. I do not know what I would do without him.
One day at a time!
When I think of hope, the saying, “Hope springs eternal” is the first thing that comes to mind. The sad thing about this phrase is it sounds cheerful and sweet, when it means things are hopeless! What a nice way to say something is hopeless. (from Alexander Pope’s poem, “Essay on Man” from 1734)
-Hope springs eternal in the human breast;
Man never is, but always to be blessed:
The soul, uneasy and confined from home,
Rests and expatiates in a life to come.
Origin of Hope Springs Eternal From: http://en.wikipedia.org/wiki/Hope_Springs_Eternal
Definition of Hope From:http://en.wikipedia.org/wiki/Hope
How do I write about hope? My best example is my great-niece and nephew’s birthday party. My great-niece is older, so she understood presents a little better than her brother. I love kids, especially my sister’s kids and their grandchildren. Since I was unable to conceive a child, I spoiled my sister’s children with the loudest, most annoying toys I could find. I was younger and in better health with my older sister’s kids, so I was able to spoil her children more than my younger sister. But I’m having fun with them now, they are older and understand my illness better.
Julie-bug is my oldest sister’s daughter. I have recently discovered that she doesn’t care if we give her kiddo’s noisy toys, Soooooooo…….watch-out Bugs, you may not know what your quiet Uncle Barry is capable of. He is a prankster in disguise. My oldest sister’s brother’s do not have children yet, so their time will come. We cannot wait!
The party we went to was precious. My niece has turned into Super Mom! She is so creative and always has been. Home-made everything from decorations to the cake. She is Wonder Woman. I am so proud. She has always made me feel like a special part of her life and I feel honored that she has let me be part of her life! She has accepted Barry as her uncle as if he had been around her entire life. It thrills Barry to be a part of her kids lives. Luke too, of course. Julie did a super job in that department also. Her hubby is a sweetheart and treats her like a gem!
OK, back to the party……our little nephew would open his gifts, play with the toy for a while and on to the next gift. When he got to the last of the gifts and the only thing left was paper. He searched every inch of the paper, numerous times, looking for another present. Until his sweet mommy picked the paper up, he was positive there was another gift lost in all that paper. When Julie took the paper away, he had a look of sheer disappointment on his sweet little face. Just adorable!
About 30 minutes later, he found the bag of gift wrap. By the time he was found, he was upside down in the trash can still looking through the paper. When he was pulled out of the can, all he said was “Birthday, please”. The can had to be removed from the room.
I love kids. I would have had a houseful if I could have, but Barry and I are enjoying being Aunt Gege and Uncle Bear! All six niece’s and nephews have called us that. I’m still called Gege by the 30 year olds. They are still adorable. We love you guys! I hope this is a good example of Hope. A little boy’s Hope that there were more presents. Adorable! I am a little prejudiced.
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”
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.
The Healing Power of Forgiveness
She informed my husband we need to schedule an appointment to discuss options and she asked if we had thought of what to do if this matter came up.
Barry and I had not expected this matter to seem so quickly, so our answer was of course, No! Maybe we were a little naïve, but we were trying to work on the “positive thinking” option I guess we need to work on that a bit more.
I have always been vigilant with scheduling my physical and mammograms.In 2009, the brain tumor appeared and threw us for a loop.
After the brain tumor the weird symptoms appeared and I was diagnosed with; Cowden’s Syndrome, Lhermitte Duclos Disease, Thyroid Cancer, my gallbladder was removed, my tonsils were removed a second time, my mammograms started showing suspicious areas that needed to be rechecked and then biopsied.
During all of this hoopla, I felt the incredible urge to seek forgiveness from my God, my family and friends. When the possibility of death smacks you in the face, it makes you take a step back and look at our life. I felt silly apologizing to some of my friends, but the Lord and my is a different story.
My husband Barry was the toughest, but I could tell he was confused. But we talked it out. One of my desires, was to find and get involved in a good church. I wanted Barry and I to go together. I missed attending church.
We have since found as wonderful church and have become active members. Mom is going with us. It is a pleasure to see her enjoying herself and flourishing in the church community. She is about to be baptized.
I continue to ask God for forgiveness daily and to grant me the Grace, Strength and Mercy to help me settle the uneasiness that remains in the pit of my stomach today; I believe I know what I need to do to settle my stomach, but I am scared.
In the next month, I think I’d like to apologize to my ex-husband. He feels like my missing link. The problem I need to solve.
My family is extremely supportive and I love them each and everyone. They seem to have accepted my apology without fail. I hope this brings the closeness we once had back into our lives.
I didn’t leave my first marriage as I should have. I left my sister, Sandy and her family in town to deal with my mess. I was a mess at that time and truly did not know how to handle the situation. To put it plain and simple, I was young, stupid and scared. I got a new career and threw myself into work.
Seeking forgiveness from everyone involved, has started to ease my mind. I still need to follow through with talking to my ex-husband. We will see if it helps.
DAIlY PROMPT FROM
Ever feel like a lab rat? Let someone diagnose you with a rare genetic disorder and then try to find a doctor that is not afraid to treat you!
I have two neurologist arguing over who is supposed to do what. A third stated it was exciting to have someone like me in the office and then proceeded to tell me how lucky I was to be under his care because he is so good!
And yet, here I sit. I’ve been trying, since last Thursday, to reach a doctor to discuss some changes I am experiencing.
I’m in pain, my speech is slurring, at times, to the point of not being able to understand a thing I say and can’t manage to find someone in this doctor’s office that can read a message correctly or it could be the message taker.
Every referral source I checked said I am seeing the doctor’s I need to see. I see them about every four months, but if you need anything in between those visits, FORGET IT! The “premier specialist” dealing with my problem is located in Cleveland, Ohio. Long ride, even every four months.
Forgive my poor pitiful me moment, please! I’m just a smidge agitated at the moment. I feel so bad and cannot get any relief. Maybe I’ll fly to Cleveland over night and surprise that specialist first thing in the morning. Have a great day, everyone!
Please, someone tell me when it is okay to run away. I’m not sure how much more I can take before I crack.
I live the “Life of Riley“. Honestly, I not sure what that means. Was it a TV show? Radio show? Cartoon? I’m going to look it up. The situations I’ve heard it used in usually involved someone having it made; not in need of anything; someone spoiled rotten. All of the above, at times, can describe my life.
I live in a beautiful home with the perfect husband and family pets. We have one boxer and one fish. One step-son that keeps his distance.
My husband and I are raising my mother. It can be a challenge at times. But we make it.
We are far from well off or rich, but we are comfy. A lot of people today can’t say that. It really hurts Barry and I to see others struggle. We help when we can, but keeping up with medical bills will eat you alive.
Since 2009, Barry and I have run from doctor to doctor trying to figure my illness out. It is starting to feel like a waste of time. Every time I see a physician, something else is wrong.
Is this a never-ending battle? Is all the running around doing a bit of good? I guess I’m a little tired of being sick. I feel like my life is falling apart and I’m not sure what to do.
That doctor, last week, really threw me for a loop. Just uttering those 2 little words has my head in the toilet.
It was like the day the doctor told me about the brain tumor. “Oh by the way, you have a brain tumor.” That is how he told me. He added a few other things to it, but that was enough to shatter my world. My head was in a spin then, and it is spinning like a top now.
I’m not going to do anything stupid. God has kept me around for s reason. I have too much life left to live to do anything stupid, I’m just trying to write this down to see if it will shake me out of this funk.
I should be sleeping . Big birthday party tomorrow. Going to be a long day, I need my rest. Barry is snoring in the chair next to me as I type. Maggie is snoring on the couch. Maybe I should follow suit and go to sleep. Maybe I’ll feel better in the morning.
Hope everyone has a good weekend. I’m trying to turn mine around. Be sweet!
- Understanding a Brain Tumor Prognosis (everydayhealth.com)
Click the link for our 200th post:
The 200th post is below, but I’m gonna leave the page up too. I have removed any mention of a certain person who shall remain nameless. Enough said.
We thought this post required something special. I find it difficult to believe we’ve been blogging since September 8, 2012! We have been on a journey since that date, but we are holding on strong and closer than ever.
This blog wasn’t our idea, but we have thoroughly enjoyed compiling information for post together. It truly has been therapeutic for both of us. Who would have thought that a counselor, specializing in neurological issues, would know what they were talking about? Maybe that was what we were paying them for? At least our insurance was…..
We have done so well. Blogging has brought new friends into our lives and seen a few leave. The good seeds continue to take root as the friendships flourish. Others are like annual flowers, they are incredible at first then the heat of the sun fades their colors. Then you pull the annuals and throw them out to put new color in your garden. It is a shame all flowers and friendships cannot be timeless. Enough said on the matter.
Barry and I continue to enjoy each blogger we have met on WordPress and stay sorrowful over those that did not work out. We have met some incredible people, who have taught us both a lot. Papazilla actually got me to debate a topic in writing, which is something I avoid like. I do not speak well, so there are certain things I do not freely take part in.
I have a rare genetic disorder. I felt so alone dealing with my illness at times, then my friends and family remind me I am not alone. The internet is an amazing tool to use to connect with people you may not meet normally. Barry is wonderful and my best choice to discuss my disease with. Thanks to everyone for being wonderful!
BrainTumorThursday on Twitter has become a weekly part of my life. When I can take part, I do. When I can’t, I make sure one of my posts, about a brain tumor issue, is on the page. There is such a huge need for funding for research. Brain Tumors kill too many people yearly. I’m including a link to a national foundation for when you would like more information.
Two groups of hardworking people working to stop the pain of brain tumors. Please check them out. Barry and I take part regularly in the SBTF run/walk to raise money in Atlanta. We enjoy the get together. We also take part in a monthly support group for brain tumor patients. Very helpful group, when figuring life out after a brain tumor.
I’m including the website for the support group below, check them out. Very enjoyable group.
Tons of extremely hardworking people, check them out!
Check out #BrainTumorThursday on Twitter. Just do a search. Do not forget the hash tag.
Other health issues in constant need of funding are mini-strokes and strokes. As a nurse, I know what to look for and what they look like when occurring. Many people have health issues happen today and are clueless. They have no idea what is happening or whether to consider it an emergency or not. It is truly sad in my eyes that we are not more educated about our bodies and how we should respond to them when they scream at you,
‘HEY, I NEED ATTENTION!’
I’m so glad I was home with Barry when his stroke occurred. He’s an extremely healthy, highly intelligent man. He did not have a clue or remember anything past us getting out of bed that morning. If he had been home alone, he would not be with us at the moment. God is good and decided he wasn’t finished with Barry. He helped me get the right people on to Barry, then the doctors and hospitals took over. New technology saved Barry’s life. Emory University Hospital had Barry in the procedure room before I made it to the hospital. I thank the Good Lord above for guiding the doctors in the proper care Barry needed. Although, his stroke continued once the clot was out of the picture, Barry is alive and thriving.
Since starting our blog, our lives are finally calming down. My illness is settling into a routine of check-ups and Barry is getting stronger each day. Mom is even settling into our routine(Surprise, surprise)
Barry and I are about to embark on a new voyage in our lives. When he retires, we will have time to run around and do what we want. Travel; be lazy; work in the yard; go to church; visit family; who knows, maybe we will see a movie at the theater…..I have a huge list of ideas, I just have to talk Barry into it. Barry will have a tough time adjusting to staying home. He has driven downtown(Atlanta) to work for over 30 years, sleeping past 6am is already a challenge for him on the weekends. After 9 years of marriage, I can say one thing about Barry L. Baynes. The sweet man despises change!
If you do not know CPR, LEARN IT! You may need it some day!
- Pay It Forward For Friend With Brain Tumor (965tic.cbslocal.com)
- Central Pain Syndrome (alesiablogs.wordpress.com)
- Is it cancer? brain tumor? (crozell25.wordpress.com)
Please keep Barry and I in your thoughts and prayers today. Big day for both of us. He will be alone quite a bit tomorrow in the hospital I almost lost him in over a year ago. I’m not sure which I am more anxious over, the biopsy or having to leave him alone. Thanks for your support!