Category Archives: Coping Skills
I want to write, but I am at a loss of words!
God doesn’t give you things you can’t handle, the things He gives you make you stronger. I can handle a lot, but just not sure how much more I can take.
When does your cracking point kick in? Do we have a cracking point or are we made to take and take and take…more more…How do you judge when enough is enough?
Is it that when God sees you overwhelmed, he releases the more more and gives you a break? I am not going to lie, I could use a huge break, but I am not sure my sweet husband can handle a break. At least over the next few weeks. We have to get the house ready for him to come home.
For the next six weeks, he will be on IV antibiotics and then oral antibiotics the rest of his life. A physical therapist will work on his strength at home, but I am still terrified. His lungs are filling up with fluid again, even sleeping with a bi-pap machine on. He is off oxygen all together, but I’m scared.I want to be able to care for him properly at home.
I was the one that couldn’t tell he was sick. He started showing signs of not feeling well, but refused to admit something was wrong and would not go to the doctor. I feel guilty that I didn’t push, now his cardiologist can’t give me a good answer about how much time he has. I can tell he is stressing over it, but he won’t talk to me. I have him scheduled with his psychiatrist at the first of the month. Surely home will be our new location by then.
I ask that everyone help me pray for grace, strength and mercy. Maybe with enough Faith added to the list, Barry and I will survive. Forgive my ramblings today, I am still am emotional disaster.
That dreadful place called the hospital, It was so hard to leave him there
Sitting here, in no way can this place be called fun. I am beginning to understand why people do not like hospitals. Yes, they are places where the sick or injured come to be healed. Hospitals are meant to be full of joy at the birth of a child, or extremely sad watching a loved one in pain.
Painful things happen in hospitals. A lot of people do not how what or how their bodies work making things painful and scary. Some people experience trauma or have bad memories or cannot handle the emotions that hospitals bring out in you. Others just do not like pain.
The one I am sitting with loves being at home, in his recliner, his wife in her chair next to him and the dog sitting at his feet. Water glass next to him on the table, watching a crazy comedy on the television. He has his cute little quirky sense of humor. I never know what to expect out of his mouth. He even talks for the dog! It is so funny! She just turns her head side to side looking at him like he is nuts.
They want me to place him in a long-term care hospital. I do not feel that is where he needs to be, but I’m not a doctor. In my opinion, that will only make him worse. He needs some rehab. I can see a rehab center.
In the two days I have been with him, he has perked up. Getting in and out of bed on his own (even when the staff did not want him too) He’s getting adventurous, I just hope he does not hurt himself. I love him so much it hurts. The thought of being without Barry, well, it kills me. We aren’t at the age that this kind of thing is expected. I just feel so very lost.
Related articles
- I hate hospitals. A lot. (thislittleworldofours.wordpress.com)
- SunDowning (threepee.wordpress.com)
- i’m confused… (jadedrvt.wordpress.com)
- Why Do We Feel Pain? (everydayhealth.com)
- Dear Hospital, this is you (through my eyes) (colourthemoment.wordpress.com)
Absolute Worst Two Weeks Of My Life
The past five years were the beginning of our on-going nightmare. It has been one serious medical issue after another.
Two weeks ago, Barry was hooking the computer to the television for us to stream the evening service. Barry suddenly starts to fall straight backwards. I called out to him several times, without response. Barry takes a blood thinner, so he truly did not need a lump on his head.
When his head hit the wooden ledge on the front door, he started convulsing. He ended up on his right side, I checked him for injuries, covered him up with a blanket and got a pillow. After around three minutes, he started coming around. He was quite confused and wanting to know what happened. By this time, I had gotten mom and 911 had been called. They were incredibly slow. Apparently, the county EMS was hopping all night.
Once in the Emergency Room, they got things going. There was something going on with his heart. He had a strange arrhythmia that the hospital felt needed more attention, so he was admitted.
The next night, there was another episode opting a move to the ICU for better observation. I found out about the transfer when Barry called the next morning to say he was being trasferred to Saint Joseph’s Hospital within the next hour.
I got ready and headed to Atlanta, as quickly as I could. My sweetheart does not like hospitals and I knew he would not want to be alone. I stayed with Barry for two nights.
Then I had a chemo treatment and on Saturday, the injection to boost my white blood cells. The day of my chemo treatment, they discovered a blood clot under my right arm. I started the injections they ordered before chemo. The next day my right arm was acting up, so I requested to see the infusion center fellow doctor. Since starting the injections, shortness of breath occurred everytime I preformed a task or stood up to walk. I was concerned the clot had moved to my lung.
I was sent straight to the Emergency Room for evaluation. We chose to go to the hospital Barry was in. He was already downstairs having a pacemaker put in. Due to my injection, I was unable to see Barry before the procedure.
Our wonderful pastor made it just in time. Barry was thrilled to see him coming. While I was being evaluated, my sister went to check on Barry and let him know what was going on. He was worried. I tried to convince him I was fine, but do men ever really hear what their wives say?
I was released with a diagnosis of pneumonia. More drugs to take. Gotta love it! Kristie and I almost ran to his room. Kristie needed to get on the road soon. Not only does she have a husband and two boys, she had taken the role of chief caregiver to our father. Barry wanted me to stay, but I was running a fever. He had more test scheduled for the next day, he’d never know I was there or not.
We headed home and packed a bag. I was ready for the next day. My nephew was picking me up to drop me at the hospital for a few days. I wore a mask when I had the fever, and removed it when I did not. We met Barry’s surgeon that morning. They were scheduling his surgery for morning. During the night, I recieved a call that my father had passed away. After surgery, I would not be able to see him. He would be moved to CVICU and I would not be able to see him freely. His doctor told me to go home and come back when he is stable.
Barry had an abcess in his heart and the wall of his heart was erroding. They had to re-build a section of the heart to be able to get a valve in and they were unable to use the mechanical valve. A pig valve was placed. He has been in ICU for over 6 days and today, they finally got him off the venilator. He was up in a chair last time I spoke to the nurse. Such a huge improvement since last week. I was terrified of loosing him. I lost my father.
My blog post my be scattered, but I will get back to normal soon. Missed you all!
Jill
A Night I Wish Would Just Go Away| Another
After Barry’s stroke in 2011, I was praying that similiar episodes would be at least ten to fifteen plus years down the road. But as we all know, it is not our choice.
God’s plan guides the flow of our lives. We have knowledge of the plan’s existence, but we have no choice in the details or are we given choices of how our plan plays out. God knows. Only he has knowledge of our life plans.
Since 2010, Barry had an aortic valve replacement; a large territory, massive MCA; and now last night, a seizure has been added to the list. The etiology is currently unknown. Other than having every test in the book today, they can’t seem to figure it out. He has swelling on the side of the old stroke, but no other results.
Last night he was connecting the computer to the television, so that we could watch the live stream of our Wednesday night church service. We chose not to go last night because I had run a fever most of the day. He was standing at the computer, near the television when I realized he was falling backwards. I called out to him several times without a response.
I started calling for my mom to help. She called 911 to get an ambulance. He hit the front door, with the back of his head, and started shaking from head to toe. He was kicking his legs and flinging his arms. About five minutes into the seizure, he came out of it and started to talk. He didn’t know what had happened and wanted to know why he was in the floor.
When I wa able to check him out, he has a lump on the back, left side of his head about the size of a grapefruit. It is still swollen today, but getting tender. He is having a little pain in his left shin. They said they were going to do an ultrasound to make sure he isn’t forming a clot. He started getting back to normal, but I made him lie still until the ambulance arrived.
They checked him out, loaded him up and headed to the hospital. We’ve been here since nine o’clock last night. He rested well, I just want info on the problem! Wish us luck! An Associate Pastor came out from church. We had a nice visit. He has had a few calls from other church members.The Good Lord is with us, but please keep us in your prayers! Thanks to all of you for your continued support and kindness!
Jill B.
Writing Through Cancer | For the Week of August 4, 2013: Can It Get Any Worse? Part 2
Part 2
My strength comes from the Lord, my family, and my handsome husband Barry. I draw a bit of strength from each of these people. Together, day by day, problem after problem, we grow stronger as a group. The easiest way to deal with issues is one at a time, one day at a time.”Hope springs eternal”, from Alexander Pope, An Essay on Man. That quote says it all. Keep hope alive.
Barry and I are adapting well to dealing with our illnesses. We had to get re-acquainted with each, but everything has worked out. He had to retire. The stroke left him unable to handle working full-time. Barry made adjustments around to house to aid me in normal daily function. He helped Libor and Jonny build a porch and ramp off the front of dad’s home. Worked beautifully.
There is no course reversal for my illness. There is only management and learning to cope. You keep up with your yearly appointments, take your medications as prescribed, eat healthy, and exercise. Cowden’s Syndrome is a rare disorder about a mutated gene in my DNA. To learn more, follow the link. http://en.wikipedia.org/wiki/Cowden_syndrome is related toLDD: which is just a symptom of Cowden Syndrome. http://en.wikipedia.org/wiki/Lhermitte%E2%80%93Duclos_disease
No one looks forward to losing a loved one. I for one, can definitely say, I am not ready to lose my dad, Barry lost his father at a younger age, so he is helping me deal with the emotions, while I take care of my health. My sister’s are in the boat with me. We’d like to keep mom and dad around forever. But that is not in God‘s Plan. Only he knows when it is our time to be with him. So, One day at a time. Slow as we go, enjoy every minute we have.
The daily prompts I write from each week come from the following blog by Sharon Bray:
http://writingthroughcancer.com/
Follow the link to her blog. She is incredible! Thank you, Sharon…..Jill Baynes
Writing Through Cancer | For the Week of August 4, 2013: Can It Get Any Worse?
Can it get any worse? Maybe so, but then again, maybe not. Hope keeps us moving ahead, one step at a time. Think of a times you were dealt bad news, your own or someone else’s? How did you first react? How did you get through a difficult period in your life? What helped? How did you find the strength—even hope—to cope and begin to heal? How did you find a way to reverse the course and bit by bit, make your life better?
When life decided I needed to make lemonade, someone had a truck load of lemons delivered and dumped them by garage door. I guess for easy access from the kitchen. God knows I have trouble walking, I guess he was just trying to help out.
Hope keeps you going, but the Lord above is raining that hope down on our situation. We need a good saturation of hope. Through our bible studies and attending church regularly, I think we are finally relaxing as issues occur and giving things to God.
Dealing with my diagnosis has becomes easier daily. I’m adapting the attitude. when
I am working on handing all my issues over to the Good Lord above. Currently Barry and I need all the help we can get. It seems like everyday day gets a little tougher.
If you follow our blog, you know our history, but what you do not know is that my mother lives with us. She has her separate living space, but has no boundaries. Mom is newly diagnosed with Bipolar Disorder and the beginning stages of Lewy Body Dementia. If interested. to find out more about Lewy Body Dementia, follow the following link, http://www.lbda.org/
It was the hardest thing I have ever done in my life. Leaving mom at a hospital to treat mental health issues. That’s my mommy! I’m supposed to take care of her. I cried the entire day we took her over to the hospital.
On top of managing chemotherapy for breast cancer, managing my mom’s care, making sure Barry is OK and assisting my sister when I can with my dad; Barry and I do what we can to help out at church. We are slowly working into volunteering more often, as my energy level rises. We are truly enjoying it.
My dad has been given an undetermined amount of time to live. He is suffering from heart, kidney and liver failure. He has moved into my younger sister’s extra room and monitored by hospice. If anyone needs help with anything, please let me know. Barry and I will see what we can do.
When we first found out about dad, it was the day I found out I have breast cancer. I didn’t know what to do or how to feel. Dealing with the two is a t of emotion to handle at once.
Talking with my sister’s and my blog has helped me pull through this mess. We are taking one day at a time, one problem at a time. We are all hoping daddy will surprise us all, and turn things around. Hope keeps us going, but knowing his salvation will bring peace to each of us.
On chemotherapy, I have not been able to aid my sisters as much as I would like to with dad. The brunt of his care has fallen on Sandy and Kristie. They both know I would be right there with them if I could, dad knows to. My daddy knows I love him. Barry lost his father at a young age. He is my rock, my strength as usual.
I’ll finish this up tomorrow. I’m pooped. Sweet dreams. Mom has gained a little weight. We need to take her dress shopping tomorrow. Could be interesting.
The daily prompts I write from each week come from the following blog by Sharon Bray:
http://writingthroughcancer.com/
Follow the link to her blog. She is incredible! Thank you, Sharon…..Jill Baynes
Daily Prompt| Origin Story
I have always kept a journal. Summarizing the day always seemed to make me feel better and helped get any feelings out that I usually would let build inside myself until I got angry.
I gave the journals up with my first marriage. I missed the writing, but I was focused on being a new wife, no time to write.
Barry and I started the blog after we both dealt with serious illnesses. Barry suffered a Massive Right MCA Stroke in 2011 and I had brain surgery in 2009 to remove a brain tumor. The tumor was benign, but it left me with a few after effects. The tumor he was unable to remove, started pressing into my cranial nerves causing twitches, voice trouble and neck problems.
The tumor ended up being a side effect to a genetic disorder that can cause all sorts of health issues. Barry has been released from his neurologist care, but just needs to call if any issues pop up. My neurosurgeon has released for the next five years. As long as I have no issues, I only have to see his funny face every five years, I love it!
The blog was originally the idea of our Neurological Counselor. She felt that if we wrote our feelings down, we could manage any issues better. It has truly helped. Barry and I communicate better, we aren’t cranky with each other, and our relationship has improved. This helps us transition through issues as they come up.
We continue to blog today, because it is helping to retrain our brains and keep our writing skills as sharp as we can. We work on the daily prompts together. Keeps the brain sharp. We enjoy writing together. We pass ideas around until we come up with a good response to the daily prompt. I do the weekend post. Barry does two post a week and I do the other two days. Most of the time, we work on all the post together. It has become an important part of our day!
How to get from what if to so what? | Give it to God
My life is full of fear daily, my illness can pop up with a change at any moment, the good Lord helps me manage that fear. I have focused on what if this happens, what if that hapoens, I am learning to focus away from the pain and find something positive to focus on.
Giving my pain and issues over to the Lord has made my life so much simplier. I do not stress as much as I used to about the little things in life. Allbeit my health is not a little thing, but the Lord eases my anxiety.
Although I am almost through with my chemo treatments, with radiation coming up quickly, I find myself wondering what next? My counselor says it is time to let that go and get to the point of saying so what when something new happens. Get straight to handing things over to the Lord and get on with your life. Just handle it and don’t worry! I’m getting there, but I need a little more practice. God is still helping eith my coping skills.
Setting boundaries with family is another issue altogether. I have to pray about it a little more. Still looking for answers on how to handle that situation. Wish us luck!
Daily Prompt: Life After Blogs
Your life without a computer: what does it look like?
If I did not have a computer to do my blog and everything else we do online, the word old school comes to mind. I remember diaries, writing letters, land line phones, and actually talking to one another.
Kids today may not understand several of these things, but the human brain is an amazing organ. It can help you learn new things. They would learn to cope quickly.
My life without a computer just takes me back in time to pre-technology. I’d feel as if I were in high school again. The only negative I see in the picture, is paying long-distance fees for the telephone. Otherwise, I’m good!
Two Rights Attempting To Make A Left! 
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