Alas, another night filled with indescribable belly pain. Knock you to your knees and beg to pass out kind of pain. Pain pills barely taking the edge off, I can’t imagine what it feels like without them….I don’t have any recourse left…no doctors that I have found to date will operate until I am literally taking my last breaths due to obstruction or peritonitis. Part of the bowel is dead. I cannot eat anything other than crackers, tea, gatorade, silk vanilla milk, some babyfood and occassional toast.
I can’t keep the bowels working normally. I take stool softners three times per day. I take probiotics and digestive enzymes. I live on Gas X and Mylanta. I take Mirilax daily. Then about once or twice per month i drink a bottle of Mag Citrate…with all of this…I am lucky to have a BM once per month…and its not anything close to resembling a normal BM.
So, what to do what to do, eh? I have sent my records to doctors in NY, NJ, FL, CA, OH…and spoke with one in Germany who has helped alot of people when other docs couldn’t…none of them feel its in my best interest (or theirs) to even attempt any surgical intervention, unless I’m already dieing. Which, make no mistake, I AM indeed dieing from this…its a slow agonizing death…but coming all the same.
Oddly enough I am at this point in my head though, where if I found a doc tomorrow who said “Hell yes I can fix you!!! No problem! Lets get you scheduled asap and get you out of your misery young lady!” There is no way in hell I would believe or trust in this doctor…so, what’s the point in looking? I’m not even sure anymore. I mean, living in this agony is no walk in the park by a long shot…but atleast I’m here…breathing…watching my kids lives…a part of it all…I can accept this, I can live this way…I’m tough as nails and stubborn as a mule, but its the fear that each increase in pain, or each day without a BM or the lack of nutrition is getting me closer and closer to death. The fear is killing me.
I have met so many strong and inspirational women online. They have become my sisters in illness. I hate that there are others who are suffering like I am out there, yet I’m so thankful to have found them or to have been found by them. I feel not as alone in this fight.
I don’t know if I’m useful to anyone anymore. Somedays I’m pretty certain I am not. Somedays it feels that no matter how much I try or how much effort I put into doing what I can for others, it’s not enough…or infact is detrimental in some way.
I want to keep living. I can’t accept that this is all my life was to amount to. I’ve been fighting for life since I was a young child…right up to this very day. I’m a good person. I am a giving, caring, empathetic and nurturing person. I want to help others, to give whatever I can to people in need. My husband said the other day that if I won the lottery of billions, I would die poor because I would give it all away, and this is true!
But how can I help anyone from a bed while in the fetal position clutching a heating pad in tears? This can’t be my “purpose” can it? I keep thinking I will figure it out. I will find a way of being useful, a way to help those who would appreciate it and not take it for granted. But each day I wake up and either the pain is too great to move or I am recoving from the day before that was.
Our finances are in ruin due to medical bills. With more to come. It’s just added stress that also wreaks havok on my already totally wrecked body and precarious emotional state.
But I’m not throwing in the towel. Not yet. But I’m kinda throwin in a cotton ball…askin for a truce for a bit so I can catch my damn breath here…and plan the next fighting sequence.
As always, I believe in the power of prayer, so I will take all I can get…
I believe in positive thinking and gratitude…and I’m doing that daily, with a few falters here and there.
I believe in laughing, loving, living, learning and listening.