Decreasing my imput is what my doctor is telling me to do and he is on call this weekend in case we need to go in which is a relief. These past couple of days have been incredibly painful and trying for me as I continue my efforts to avoid going into the ER. I'm so scared that I won't come home alive and that this could be my time. I sure hope not. True, none of us know and by me being so scared it's not helping me in any way. I want so bad to survive this horrible curse as long as possible because of all the great things in my life; most of all my husband. Sometimes I even feel guilty for it seems that I'm just stringing him along this horrible journey of mine and that he indeed deserves so much better than this. I love him with all of my heart and soul and I hate more than anything seeing him suffer seeing me like this and in the pain that I am suffering. It's sometimes too much!
Last night was the most trying night of all and while I did make it through the night sleeping on the couch; I had to leave my G-Tube open all night so that my stomach contents could constantly drain. or else wake up from time to time feeling like I was having the most horrid heart burn/ attack ever; just like my heart is being being squished beyond recognition; like a car is running over my heart. It is horrific pain. I'm not so sure I like having to do all this shit to stay alive but I just do what I need to do everyday. I'm surviving artificially right now and my husband and I have been talking seriously about taking me off TPN because it seems its doing me more harm than good. It doesn't seem like healthy conversation to most but what am I to do? I have to think about the future and if I will make it?
I'm puking all the time it seems and constantly having to drain my stomach. I can't even go on a short walk with my dog without puking somewhere in the bushes. This time when I puke it's horrible pain on my tummy and my heart. It almost feels as if I am having a heart attack each time and I cry and hold my knees and bang on my chest to try to ease the pain. So far the vaporizer is working at least for a little while; the Dilaudid is like eating sugar; it's doing nothing for this pain. My mouth seems to have to stay dry because even if I have just a sip of water; if I do, I get sick. Something is seriously wrong with me and we may be heading into the hospital today. This is just an update for many. As I was typing; my husband had just replaced my medical waste bag and this little clown was around to make me smile even though its very hard at this point being so scared for my life right now.
I took Blue Belle outside to play with one her little doggie friends and I sat out in the sun for a bit to absorb some vitamin D. I hope to feel better as this day progresses.
I promise to fight as hard as I can but I don't know what's around the corner for me or if anything can be done to ease my suffering. Peace and Love to all of you! I hope one day there will be a cure for this dreadful disease and that NO ONE has to suffer as I do. I don't mind the suffering too much; if is more than worth it to be around for my honey. I feel that I'm too young and still too strong to let go just yet!) For now I'm going to fight as hard as I can to be around and give others hope that they too can survive this disease despite setbacks. The human body can be very resiliant and I will face what I have to face what ever happens to me. I'm ready still!)
More updates to come!)
More updates to come!)
12 comments:
Please know that I am thinking about you and praying for you all the time.
You are a strong woman and I admire your courage a lot.
Take care & Keep up the fight!
I am praying too. God knows there are so many of us all around the world, all thinking of you and praying for you, that your pain will ease, that you'll stop being so awfully sick.
God bless,
Chrissie
Damn, Jayne - I feel so bad that you have been going through so much pain and discomfort. I wish there was something I could do to get you healthy again! I pray for your health to return every day. Your heartburn sounds like gallbladder issues which I've had quite a few times, very painful. I read the link to the TPN that you have. It sounds like it's a damned if you do and damned if you don't, type of situation. Be very careful of sepsis, make sure anyone and everyone that comes near you washes their hands, thoroughly, okay?
Thanks for sharing the video of your boy, Tonto! He makes me smile too!
Here's to you getting your health back... soon!
Love ya, kiddo!
BJ
Oh, Jayne. I'm so sorry about your pain. You're so lucky to have your honey, but I'd bet he feels lucky to have you. You are amazing. I enjoyed your video of your bike ride. Blue Belle is such a beauty and looks so soft.
Just remember you are in my prayers and thoughts. You go through my mind multiple times each day and I worry about how you're doing. Love ya, Deb
jayne, we are praying for you!! lots of love and hugs to all of you!
~amy
You are so strong, Jayne! I wish you didn't have to go through this pain and suffering. I just know you'll keep fighting because you truly have so much love around you...and so much love to give. Tonto's video is adorable! I hope tomorrow is a better day for you.
♥
Marilyn
Hello! I am writing to you all the way from a small country near Australua called New Zealand ( where Lord of the rings was filmed). I have been following your journey for only a couple of months and it has helped me heaps. My beautiful mum is 53 years old and in the last stages of her battle with OC. She was diagnosed 2.5 years ago stage 4C terminal ovarian cancer. She had surgery which included removing her entire large bowel and her ovaries were so enlarged with tumors they filled her abdomen. She ended with an illeostomy bag ( permanent). Blood transfusions etc it was horrific and a huge shock. It just roves how insidious this disease is . My mum was a nurse and midwife and even she missed the signs. After spending the last 2 months in hospital because of bowel obstruction after bowel obstruction the decision was finally made to move from active treatment to symptom control and palliative care at home. It was very scary for her and us. She felt she was being sent home to die. No more chemotherapy no more blood transfusions, iv fluids and magnesium etc etc just a sub cut pump to provide meds for symptom relief. Since being home for a week she seems to be in much happier than she was in hospital and it has been liberating for her to be free if all the "stuff" that comes with being a OC patient in the treatment phase. I am sorry if I have rambled on a bit! Reading about your journey has helped with the journey I am on with my family at the moment.I want to sat thank you for sharing such a personal battle
with us and I'm praying fir you and your fantastic hubby!
Bye from New Zealand
Tan. Stay at home mum in New Zealand.
Jayne,
Love, love, love!
Thinking of you and yours.
Love
Karen (in sac)
I am in awe with you. Although our disease is the same, our journey is different. My prayer is that you find peace and comfort where-ever you can. My prayer is that you have many, many, many more days to enjoy your beautiful husband. My prayer is that you will continue to be the source of strength and inspiration for so many people.
Blessings...
I hate to even think of the pain you must be in and the awful uncertainty. We are thinking of you. You are in our hearts.
There are angels that we meet and angels all around us - the ones we're unaware of. Sometimes, we look back in life and recognize who they are, have been and yet to come. You have been and are an angel that we who travel this unfortunate common bond of OVC have been priveleged to meet and you are one heck of a great angel! Your hubby is your angel as you are and will be his too....this is forever. I pray that you are having some good pain free moments and that you know how much you are cared for and uplifted in prayer..((♥))North Carolina Ellen
We love you, Jayne. Thinking of you, sending curing energies your way.
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