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!)