In August 2013, my sweet husband passed out cold in our living room. In the process of falling, he struck his head on our front door and appeared to be having a seizure. Later we discovered the seizure-like activity was due to hitting his head. He had a concussion. The Cat scan showed he had swelling in the right lobe of the cerebrum. While I made sure he was safe, I got mom to call 911. The ambulance arrived and swept my sweetheart of to the hospital. We spent the next five months in and out of the hospital. Six months later, he is home, healthy and running circles around me. God is good! Numerous doctors tried to tell me that Barry would not survive. They did not know my hubby. Barry and I are strong-willed people and we do not give up easily. I was not about to let him give up! Once we settled into a routine, I started to notice subtle differences in my sweety. At first, it put it off to what he had been. I then realized his body was full of medications floating around his body. He needed to flush his body with healthy food and fluids. His thought processes were slower. He lost his inhibitions. For the first few weeks, it was like I had married a seventeen year old boy trying to discover the world in 24 hours. It was hard to keep up with him. He is closer to normal now. When I had a chance to speak with his cardiologist, he educated me on “pumphead”. The link below will go into more detail. I will miss the comical antics, but thrilled I am to have my Barry back. We spend our time in the kitchen discovering low-sodium dishes to keep us healthy. Mom lives with us. She needs the low – sodium dishes more than we do. http://www.heartdisease.about.com/cs/bypasssurgery/a/pumphead.htm
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 write post like these, you all need to realize that Barry is aware of what I am posting and is fine with it.
Mr. Baynes let something slip tonight while at the store. I do not think he intended to tell me. Over the weekend, he went to Lowe’s by himself. This I was aware of.
He left out his side trip to the beauty shop across from Lowe’s. He actually walked in the salon and asked if they had any beads he could clip in his hair. From what he says, he stopped all work going on in the shop and the place was roaring in laughter, with a side of shock.
Any of you that have looked at our pictures are aware that my sweet, sexy husband is as bald as they come. Is it safe to let him out of the house alone? His stroke took every inhibition Barry had. I never know what to expect next.
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)
With Cowden’s Syndrome, you have to follow a set schedule to keep up with which screening is next. Then, of course, if there is a problem, the screening and recheck can run together.
I had a breast issue last year that caused them to redo my mammogram, which has led to other mammograms, ultrasounds and now, 6 months later, a biopsy. Scheduled Monday, one hour before my neurosurgeon appointment. At least they are within walking distance of each other.
The sad thing is, my next yearly mammogram is due in April. But I guess my mammograms are about to put a kink in my set schedule. In my schedule thus far, gynecologist, endocrinologist, neurosurgeon, neurologist, neuro-oncologist, gastroenterologist, dentist, urologist, dermatologist, psychiatrist, counselor, genetics counselor, general practitioner, breast specialist, otolaryngologist, cardiologist, massage therapist, and acupuncturist.
Now, that I have boogered my knee up, I have to add an orthopedic doctor in there. I am sure surgery is in the future for that, which will add physical therapy into the mix.If surgery is in the mix for the next few months, I need to see about getting the lump taken out of my right wrist while they are at it.
The fancy MRI on my left knee next Thursday, then see the doctor Friday. The endocrinologist is in the mix next week somewhere. I’m getting tired thinking about next week.
Barry is my riding buddy. I’d be lost without him. I can’t drive long distances, so he gets me to the long distance rides. I’m tired of being organized. I never considered myself organized, but with all of this, you have to be. All of the above is just me, included in my mix are Barry’s appointments, as well as several I take mom to. I’m not making light of their appointments, mine takes up more calendar space than their’s does. We should hire a good personal assistant……
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”. 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.
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…..
Barry went to Kroger alone this afternoon. While at the store, he was to pick up items to make fresh salsa for tomorrow night.
My adorable, little husband gets a bunch of fresh cilantro and a sprig falls off as he bags it. Instead of tossing it in the garbage, he puts it behind his ear and continues his shopping. He said he had everyone pointing at him and giggling like school kids.
He said the clerk checking him out, asked between giggles, if he was aware he had something behind his ear?
He smiled, stated, “Why, yes ma’am, I do. I’m hoping my wife will mistake it for mistletoe.” and walked out with his purchase. He said he looked back and she was laughing uncontrollably.
My husband minus his filter, you gotta love him!
Can anyone out there tell me how to do this?
The bible says to give it to God and not to worry.
There are certain things in life that are radically difficult to just put aside and not worry about.
- Friends, eh, you learn who your true friends are when times get tough.
- Family will always be family, no matter how much worry they cause, they are family. You love them anyway.
- A brain tumor diagnosis, a stroke, cancer diagnosis, any life threatening illness that could lead to a major life change…
How do you not worry about things like that?
I do my best to give things to God, but I feel like I struggle daily with this issue. I pray and ask the Lord to strengthen my will and give me the knowledge I need to be able to understand how and be able to turn things totally over to him.
Hopefully the stronger my faith and knowledge about Christ and the bible, will help me find the peace I feel like I am looking for. My support system worries as much as I do.
God, help Barry and I figure out how to give it all over to you. We are your students……
How do you summarize such a year in one little post. This has been a year packed full of adventure and heart ache, but a year stacked and packed full of wonderful memories.
If I ramble, please forgive me. I have a lot to say, and not sure where to start, I believe I’ll take it one month at a time. Just to see how it turns out.
December 29, 2011 Barry was determined he could drive. I had an appointment in Lawrenceville that could not be rescheduled, but I would be unable to drive home. So, we turned down offers from people to drive us over and I got in the car with Barry behind the wheel. He had to see for himself that he still had a little healing to do.
Biggest mistake of my life. First time I have ever wanted to kiss the ground when getting out of the car. Once I checked in, I called to ask my sister for help getting home. After a lecture on being stupid, she came to our rescue. I would have driven home doped up, before letting the love of my life drive again.
January: was our transition month and I was thrilled to have him home. Barry was discharged from the rehab center on December 28, 2011. We were adjusting and adapting our lives to accommodate his needs around the house.
Along with this we were in the process of tri-weekly outpatient rehab at a local center. It was nice to find a good center close to home, since I was doing the driving. I do better at short distances.
Coordinating outpatient rehab and follow-up appointments was quite a task. I believe Barry and I are ending this year more organized than we ever have been.
Spending so much time together, Barry and I started getting reacquainted and honestly getting to know each other better than we did before his stroke. He is more open and relaxed since the stroke, he has also lost his filter. I never know what to expect out of his mouth when he opens it. It is really refreshing at times and always good for a laugh.
One of our nephews did not understand that Uncle Barry was sick, even though he looked the same. Barry had a little talk with him and let him know that their wrestling sessions had to be over for a while. He is such a smart little guy and watching him grow into such a sweet little young man is a pleasure. This nephew is Barry’s first nephew from day one.
His brother went everywhere with Barry and I when we were dating. Everyone thought he was our child. It was wonderful!
Since I was unable to have children, watching my sisters kids grow-up and being part of their lives has been a joy. They will never understand what that has meant to me.
February: lead into more rehab and more appointments. For a while, rehab and doctor’s appointments were the only thing on our social calendar.
This was an extremely hard month, we had to make the horrible decision to close our business. To date, I don’t know if it was harder to tell the residents or their families. Some of the residents took it hard, one got mad and lashed out, but apologized later. The others said they understood, but were not happy. The state people attempted to encourage us to stay open if at all possible.
It was not in the cards. Barry and I just could not do it alone anymore and we could not afford to pay good help to run the business. It honestly felt like a weight had been lifted from my shoulders. Now I could focus on Barry and I, instead of the two of us plus the residents. I had forgotten what it felt like to relax.
March: lead into the permanent close of RoseWillow Cottage. With the last resident settled in a new home, we officially locked our doors for the first time and attempted to figure out how to live in the rest of our house.
We had the pleasure of watching my baby sister receive her degree at graduation. I was so proud, she worked so hard. Although the economy is not helping her find an open position. Hopefully, she’ll find something with the new school year. She is a middle school math teacher.
Barry’s rehab had been decreased to twice weekly, with hopes to soon be discharged. He was progressing marvelously. No one could believe he had been through the massive ordeal he had. God truly had a hand in his recovery. It is the only way to explain it.
April: Lead into Barry’s discharge from rehab and I took over as drill sergeant making him exercise and do his memory drills. He has been in management for 20 some odd years and does not like being told what to do. Trust me!
I got my nice, new purple wheelchair that is easier to handle than the old one. That thing weighed a ton!
In April, God led Barry and I to our church home, Victory Baptist Church. We felt at home the minute we walked through the door. A friend of ours has been inviting us for years, but we always used the business as an excuse.
A few of our residents wanted to attend church when they first moved in, but as their condition worsened, they started refusing to go.
Barry and I also celebrated our 8th wedding anniversary quietly at home. After the stroke, Barry had difficulty with crowds for a while. We slowly got out in public to give him time to adapt.
May/June: these months found our schedules calming down for a bit. Barry had a birthday in June, he was really anxious, but survived without a hitch. In June, my mother asked if she could move back in.
She did not feel safe where she was, so she was packing her bags coming back to our house. Of course, we could not tell her no. Barry and I agreed, we couldn’t have her in her current living situation. We discussed a date and got ready for mom to be in the house again. We sat mom and my sisters down and laid out a few ground rules. Needless to say, they did not last long.
July: Mom moved in and a new iron was added to the flame of confusion. We had a few trying moments, but I learned to lock the door and keep mom on her side of the house. Best money we ever spent, the lock on our side of the laundry room. We even have a do not disturb sign on her side of the door. It is working great, at least for now.
August: started off great, then about midway into the month, I fell backwards down the steps in our garage. Stitches in my left elbow and a mild concussion.
I hate hospitals when I’m the patient. I did not realize how the hospital ER would affect my sweety, but the combo of me being injured and being in the hospital had him on the edge of panic. As usual, the hospital was slow as Christmas! I was so relieved to get him out of there, 5 hours later.
It takes me forever to recover from falls. Here it is 4 months later and my left elbow still gives me fits. The rest of August and into September, Barry and I didn’t do much traveling. Barry was adapting well and adjusting to the new him.
September: my energy level stayed in the toilet for most of the month. I was tickled to figure out the problem was not only the fall. They discovered I had an infection in my colon. This of course lead us back to the doctor with with their favorite words, tests, and you need to see another doctor.
At the same time, my neurologist decided he wasn’t sure what else to do for me and referred me to a neuro-oncologist, with experience in my brain tumor.
The new doctor added Cowden’s Syndrome to my collection of diagnoses and ordered more tests. The tests turned out to be good. They lead us into figuring out a few of the difficulties I was experiencing. I was tickled they found no cancer. But I was off to more doctors to treat what he did find.
October/November: both months were kinda packed with doctors visits, procedures, and more doctor’s visits. We were settling in at church really well. Enjoying getting to know everyone. I grew up going to church, but in the six months at Victory; I learned more about the bible than I ever have. After being picked on for weeks, I survived another birthday in November.
December is here and we are still holding on. Barry is getting stronger by the week. He has decided to retire. I’m getting used to the idea of him being home all the time. We spent the first few weeks of the month catching up on the things, we missed out on last year. December 11th came and went without us even realizing it was here.
I’m sitting here, next to the love of my life, as I type this. I am overcome by joy that we have had this time together and look forward to the many, many more adventures in store for us. I almost lost him last year and l don’t want to think about where I’d be today if that had happened.
We are living one day at a time and loving every minute!
I am usually shocked by the behavior of people without disabilities, but today I decided that no one cares about anyone else any longer. This is a time of giving, love and cheer. Barry and I got far more than that while shopping for essentials today. We only went out for things we had to have! Into the pit of craziness we went.
I’m still not feeling my best, but it was a day that shopping would have been easier with one of the motorized carts. The carts were not sitting all over the store, dead were in with the other carts, dead and not even plugged in. The people using the carts couldn’t even be bothered to turn them off and plug them in to charge. But we have to help each other. The employees working couldn’t take the time to have the dead carts around the store taken out of the way and put up to charge. They would probably be the first to complain if they needed one.
These carts are kindly made available at certain stores, so that people with disabilities can get out and do things for themselves, keeping a sense of normalcy. I have gone to the store, when I really was not up to it and all of the carts would have dead batteries or be out of service. Kinda burst your bubble. Grab a push cart and do your best yo get around the store.
Today, a lady in a motorized cart wanted to see something on a display, that she couldn’t get to. I was standing off my cart looking at an item on the top shelf when this lady decided she would try to get her cart between mine and the display. She bumped my cart, which knocked into me and I fell into a rack of clothes. She didn’t even apologize, she just rode off. Then as we were leaving, a disabled man pretty much tried to sit in the seat of the cart with me and when I did get up, he was taking off with our groceries before we got them out of the basket. On top of everything else, an elderly lady had already asked if she could have the cart. I told him that and with her standing behind him, he got on that cart and rode off. He did not even look back.
I was just shocked. I apologized to the lady and got out of there.
Whatever happened to “Love thy Neighbor”?
People used to be kind and treat each other with a littlte respect. Has respect been taken out of the dictionary? I must have missed that.
I was unable to have children. After I see the way some kids act, if they were mine, I’m not sure whether or not they’d be able to sit down for months or be grounded for life. I know what my momma would have done to us. It would have involved a weeping willow tree and picking out which branch we wanted her to use.
Barry and I were both exhausted leaving that crazy place. I just don’t get people anymore………….
Happy Holidays, everyone!!!