shirleyb
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Posts posted by shirleyb
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Don,
Thank you for your prayers.
She ended up having emergency surgery this afternoon and is her room now and resting. My son is staying with her until I can get back over there to spend the night with her as I will not leave another family member alone to spend the night in a hospital. Myself, her sisters and my kids have all made the promise to each other that we would never leave one of us alone to face a hospital stay by ourselves. We found out the hard way that things happen and you are not made aware of them until long after the fact. No one should have to go through this alone. Especially in the middle of the night if something comes up.
I came home, called a few of my good friends to talk to and cry with and get my act together. Without them I would lose my mind. They gave me the strength to get it back together.
Thanks for listening and thanks for the prayers.
Shirley
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I had to take my foster daughter into emergancy this morning. She was having abdominal pain that and we could not figure out why. She has medical issues that can be quiet unnerving to say the least. She has Marfan's, and that can cause life threatening things to happen for no reason other than the Marfans.
I thought I would be strong enough to be there for her and I found out I am not. I was fine until the doctor came in. I was ready to KILL him on site. I did not know I could be so angry with someone. He was the doctor who attended to Randy the night he died and told me that Randy was having an anexity attack when in reality, Randy was having a massive heart attack. When I saw him come into the room for my daughter I just about lost it on site. I kept it together long enough for him to check her out and get tests going to find out what is wrong with her but then I had to leave. I ended up calling her older sister to come and be with her because I could not deal with the pain it caused me to see this man. Now I am feeling very guilty because I had to leave her there and come home.
Right now I feel like I did the night Randy died and I hate this pain I am in. I am so scared that the doctor is going to blow her off just like he did to Randy. My head is telling me this is an unreal attitude to have. He probably is a good ER doctor but to me, he will always be the one who let my husband die before my eyes.
I know it will take time to learn to trust doctors again, but right now I am so scared and hurting I can't think straight.
Please pray for Priscilla that she is okay and nothing major has happened. Please pray for me that I can find some peace in my heart to forgive. Please pray for this doctor that he doesn't f%*k it up again for my family.
I did not think I could hurt this bad.
Shirley
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It was just a question really.
I could not find a way to use them legally and I checked. That is why they went down the toilet.
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Connie,
It is wonderful to see you back on board.
Shirley
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go fay
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I think this is a wonderful idea.
Now I have a question about medications.
When Randy died, I was left with about $7000 worth of medication at the house. I was told I could not return it nor could I find any place that I could donate it to for someone else to use. To me it was such a waste. As you can see the medications were expensive. We had to cover the cost on some of it but even so, I know that the Lovenox itself was worth $500.00 a shot and I had 20 doses of it here at the house. Then there was the ms cotin, the cumidin (4 dosage levels), the cough meds, and all the rest. Does anyone know of an organization that could have used this? I did dispose of all the medications I had. But it was a shame to see it go down the toilet. Some I was able to give to my sister in law who happened to need the lovenox after some surgery she had, but the rest went. Does anyone know anything about this. I am sure there are laws that I broke by giving the stuff to my SIL but I felt safe that she would not report me. I think of all the people who don't have the money or the insurance to cover all this stuff who could have a benefit from these items.
At the time, I was in no shape to deal with all the government BS.
What are your thoughts?
Shirley
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I just want to take this time to say thank you to each and everyone of you that have joined this board and shared your stories.
The last six months have been the worst of my life and I would not wish this on my worst enemy.
It has been the people on this board who have been so open and honest about what is going on with them and it has made me realize that we each have so much to offer to one another. The only ones I know who really understand what I have gone through and am still going through is you.
You have to have been there to understand the pain and heartache it brings to our families. You have helped me to survive and get back on my feet somewhat. I know I could not do this by myself and I needed others besides my kids to help me and you have. For this I will always be grateful and thankful for.
So thank you from the bottom of my soul for being here, being willing to listen and totally understanding me when I say life can suck sometimes.
My hope is that I too can offer encouragement to others to help them through these very difficult days.
Much love going out your way.
Keep your eyes open, miracles happen every day. We just have to be able to see them for what they are.
Shirley
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My hubby Randy had a stroke. That is how we found out he had the cancer. It was only when he had the stroke that the doctors looked to see what was the problem and why he had been having blood clots developing for over two months. It took a stroke to get us into the emergancy room where someone decided maybe we should see why he is having a stroke.
We had been going to the doctors for 5 months before that just because he did not feel good and had pain in his right shoulder. They at first said it was a pulled muscle. I am a massage therapist and could not touch or relieve the pain so I knew something was wrong. But of course the doctors knew it all and never did any tests to disprove what I thought. Even when I asked why he had baseball size swelling under his arms. They looked at me like I was nuts and I was not a doctor so what did I know.
Be an advocate and fight for the treatment you sister needs. Take notes, ask questions and if they don't give you answers you understand scream and holler til they do. Make the doctors accountable for the job they do.
I will pray for you both to have the strenght to get through this awful time.
Keep your eyes open, miralces happen every day. They may be small but nonetheless, they are miracles.
Shirley
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Norme and Buddy,
We are all ENTITLED to have a pity party. I just pray you are able to get back up and roll again. It is hard to get out of the pit sometimes. Just know we are here for you and will always be. Honor your feelings and then put them on the shelf.
I will keep you both in my prayers. Take care of yourself and do the best you can. That is all that can be expected of any of us.
Keeping my eyes open for miracles because they happen every day. Sometimes we just don't realize it when it happens.
Much love,
Shirley
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Karen,
I am not sure about the CD. I will have to check it out. I know music for me is one way to deal with the pain of losing my hubby. The kids thought I was nuts the morning of his funeral because I was singing and dancing and crying with Norman Greenbalm to Spirit In the Sky. It was my release. It was one song Randy and I always loved and understood. That is where we wanted to go.
Keep the faith,
Shirley
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Randy took trazadone every night. It is an antidepressent. But he slept every night and did not have any problems with getting his rest. The only time he really had trouble was when the coughing would not let up. Then the cough syrup helped and he was able to rest.
I have taken it a couple of times when I too can not sleep.
I wish you the best of luck.
Take care,
Shirley
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My wife Ada
in GRIEF
Jim,
I am so glad you have stayed with the board. Ada would have wanted you to continue to encourage others along the way. You have been there and know what the rest are going through.
I too have found a great deal of peace by knowing that everyone here on the board cares so much.
If I might be so bold as to offer something to you and to anyone else who wonders if there is a heaven, please read the book by John Edward titled "What if God were the Sun?" As I read it, it reminded me of my father. My dad could have written that book. By reading it, it has given me so much peace in the last few days. I know where Randy and Dad and your Ada are. I too will be there one day.
May you too find peace in your life.
Keeping the Faith and keeping my eyes open.
Love,
Shirley
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Randy did the lovenox at home for almost 3 months. His cancer was not found when he started throwing the blood clots. The blood clots were our first indication that something was wrong. We had no idea he had cancer and the doctors never pursued why he was having blood clots. It was only after having a stroke did we find out he had cancer. The cost is extreme for the lovenox and that is why they usually switch over to cumidin/warfine. When Randy was first getting the blood clots, we were going to the doctor every 4 days for INR's. You would have thought that the doctors would have done more tests to find out why he was having issues with blood clots (he had 14 major ones before the stroke)but they didn't do a d**n thing. They told him he was having blood clots because he had psoriasis.
My only advise is ask questions, push the doctors for answers and if you don't like how they are treating you for asking, find someone who will help you.
I pray that no one has to go through what we went through ever!!!
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Cheryl,
I am so sorry. My heart goes out to you and your family.
If I could make the pain go away I would. May God be with you at
this time.
Hugs,
Shirley
You are always here with me
You’re in my heart and in my mind,
You’re in my reverie
All my dreams and thoughts are all of you
All the memories we made, our whole life through…
When we are apart,
I’m part of you
You’re part of me
Always know our love will last right
Through eternity, for you will always be a part of me
Know that when we have to part
Just always keep me in your heart
Close your eyes and I’ll be there
You wait and see…
I’ll be the sun that warms your heart
I’ll be the stars that show the way
I’ll be a gentle breeze to blow around you every day…
I can never go away,
The memories made are here to stay
And I’ll be here with you forever and a day…
Please know that I am always there,
And our love is everywhere.
Just close your eyes, reach out for me,
And I’ll be there when a love is meant to be
It goes on past eternity,
And so my love for you …will always be.
You are always here with me.
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I just finished reading a book that John Edward wrote titled "What if God were the Sun?"
This is a song that is in the book and I thought I would share it with all of you.
Much love,
Shirley
You are always here with me
You’re in my heart and in my mind,
You’re in my reverie
All my dreams and thoughts are all of you
All the memories we made, our whole life through…
When we are apart,
I’m part of you
You’re part of me
Always know our love will last right
Through eternity, for you will always be a part of me
Know that when we have to part
Just always keep me in your heart
Close your eyes and I’ll be there
You wait and see…
I’ll be the sun that warms your heart
I’ll be the stars that show the way
I’ll be a gentle breeze to blow around you every day…
I can never go away,
The memories made are here to stay
And I’ll be here with you forever and a day…
Please know that I am always there,
And our love is everywhere.
Just close your eyes, reach out for me,
And I’ll be there when a love is meant to be
It goes on past eternity,
And so my love for you …will always be.
You are always here with me.
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I too am sorry you had to find this board. But know that those on here are also very involved with their loved ones and can provide you the support and encouragement you need to fight this battle. As someone has posted before knowledge is power.
My only advise to someone who is "new" to this is get yourself a notebook and take notes on everything. Everytime you talk to the doctors, the nurses, the lab techs. Write everything down. Write your questions down and keep that book with you. It will become your bible in many ways. Write down all the medications, the tests, when, where, who.....all that stuff. I know for me it saved us so much time when it became critical that Randy get the care he needed and those treating him did not have his records avalible to look at immediately.
The other thing I would advise to everyone is get that medical and legal power of attoney. No one needs to go through the heartache and pain trying to get records or have treatment done when you don't have it and your loved ones are too ill to be able to handle it all.
I have become a real advocate that each person here who has cancer have a voice to yell and scream for them. If you feel that something is not being done right, yell until you understand. Ask questions and make them explain everything until you do understand it.
My prayers are with you and your family. Encourage your husband to quit if he can. All he can do is try. Take care of yourself both physically and mentally. Don't be afraid to ask for help from any of us on the board. We have been there, are there, and will be here in the future.
Keep your eyes open. Miracles do happen. They may be small but they are miracles. Put your trust in God.
Love and hugs coming at you.
Shirley
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There are foods that interact with the blood thinners. Check to see which ones they are. From what I know green vegs and cranberries should not be eaten. Keep a log of what Darrel is eating and see if you find any other items that might be effecting how the meds are working.
My heart goes out to you and Darrel. To not only deal with the lung cancer but now this too. Keep up on this though. From what our onc told us .. they lose more LC patients to blood clots than the cancer.
My prayers and thoughts are with you.
Shirley
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Thank you everyone for you input. I am going to continue to do the research on this as my son is greatly concerned.
Randy had all five types. The facial, the hair, the fingernails, the full body(arms, legs, trunk) and the arthitis. He showed signs of this at age 15. Some of the earlier treatments included tar based ointments. Tar ointment causes cancer in rats and rabbits. Why would we think it would not harm people? Randy had some pretty acute episodes with all of them.
As I learn more, I will try and share with you.
Thank you again for your input and support. One day maybe they will find the cure for both. The psorasis was hard for Randy. The looks he got from people who did not know what it was and then they treated him like a leper.
Shirley
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I am curious. Is there anyone else out there that has developed lung cancer and also has psorasis?
Randy had all five kinds of psorasis. After his death, I was talking to a number of his family members only to find out that there are atleast 10 deaths in his family going back 4 generations linked to lung cancer. The unusual thing that I found out though was that they all had the psorasis like Randy did. The others who have the psorasis but not as bad (they had one or two types of it) did not develope the cancer. But those that had it as bad as he did, have all had lung cancer.
Has anyone else found anything like this before? I can't seem to find too much information that links the two. I have found it for skin cancer but not the lung cancer.
I am trying to find out as much as possible because our son now has the psorasis showing up and he is scared to death that he will end up like his father and grandfather.
Thanks in advance for all your support and input. This board and the people who use it are truely amazing.
Keeping my eyes open.
Shirley
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Cheryl,
You and Dick are in my prayers that he can fight this last bump in the road.
Keep the Faith,
Shirley
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Kathy,
I am so sorry for your lost of your best friend and husband. It is a nightmare that none of us wants to go through.
Be good to yourself in these next few days. Keep in touch with the rest of us on the board. We know what you are going through and if anyone can help....just say so.
May you find peace,
Keep the Faith,
Shirley
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Norme,
I am so sorry you did not get the news you wanted. You and Buddy are in my prayers. Love to you both.
Shirley
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Dyan,
I am so sorry for your loss. To loss your best friend is so very hard.
Stick around here for support. We all need it sometime.
Take care of yourself.
Shirleyb
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Ann,
I am so sorry. I know what you mean about "finding" things. It tears your heart to peaces. The memories keep coming back. The pain of not having Dennis around to talk to, to touch, is almost unbearable. My heart goes out to you.
I have a little "thing" I have started doing with Randy because I miss him so much. Wednesday's are my worst day of the week.
Close your eyes when you are done reading, and imagine and feel the warmth and love that you had with him. Don't think of him being sick. Let the love surround you, to calm your heart, to ease your pain, to comfort your soul. Know that he loved you and is still with you. Just close your eyes and let your heart be open to feel his presence. Smile. He loves to see you smile.
May the sun shine upon you today and warm your soul. Lift your face to the skys and know he is there.
Much love,
Shirley
I thought I would not be this angry, scared.
in CAREGIVER RESOURCE CENTER
Posted
First of all, thank you all for your prayers. This is one of the only places I know where I can let all my fears out and know that no one is going to say I am just over reacting. Thank you for your support.
I was able to bring Priscilla home this afternoon. She had appendicitis. (Keep in mind I can't spell worth a darn at times.) It had not burst by the time the surgeon got in there and that, in and of it self is a blessing. Otherwise we would be looking at about a 2 week stay. So thank you God for looking out for her and those that were in charge of her care.
Now she is home and resting very well. She is going to be fine.
The one really good thing that has come out of this, is the kids are all starting to understand why you have to have someone with you who can advocate for you for the best possible care. When I got back to the hospital, I really grilled the ER doctor as to what he was doing to help her. I have a feeling he remembered who I was when I started asking the techincal questions, like what tests have you done, what tests are you going to do, what were the results of the tests, what was her blood count, who was he calling to get opinions and help from. I would not let him leave until he answered all of these in terms she could understand. I got the feeling he knew I did not trust him to do his job.
Keep fighting for the best care you can get. Don't let anyone blow you off like you don't know what you are talking about. Be prepared to ask the tough questions and be prepared to make them accountable for what they say.
Much love to all.
Keep your eyes open, miracles happen every day.
Shirley