Just laying here after another particularly bad pain day, with the nausea and constipation thrown in for shits n giggles as a particularly funny n sassy nurse I had for my ostomy issues used to say…I loved that nurse…Sylvia…she was a wound nurse at St Joe. Sometimes that poor woman had to tend to me five times a day, my ostomy bag just wasn’t fitted right for my complicated ostomy. She tried all kinds of tricks, but mostly she kept me and Jim calm, as she taught HIM how to handle all of it. She would make me laugh…which is a bad thing while you’re gettin your bag changed…I won’t go into detail. She was a sassy one.
That’s all about that, not sure why it popped into my head…just that “shits n giggles” phrase. And trying to decide what if anything can ever be done about my messed up innards. The increasing and changing pattern of pain, the increasing depression and feeling of my life just going nowhere.
I’m 44 now. 44 should be a fun year! Kids are bigger, self sufficient, or gone. Sposed to start “jazzin” up the marriage and gettin your life back…right? Well, unfortunately for us, the “plan” is different. It’s me, still having the belly that looks eight months pregnant due to the massive hernia and the pain that keeps me from breathing from the major and complicated adhesions that have glued to my abdominal wall and all my organs, making removal extremely dangerous and life threatening.
I’ve yet to train myself to stay away from normal foods. If Jim makes spaghetti…I eat a bowl…then I know in a few hours I will be doubled over in pain crying and damning myself to hell for being weak and eating it. I don’t know how to to this. I need this new eating plan, but NO ONE has helped teach me what to do, how to cook or puree or whatever. I can’t just do Ensure shakes, it gets old. Can’t do mashed tatos daily, boring. Cream of chicken daily..nope. I need variety, texture, taste. But I need to do it and I KNOW I do.
I truly have no ambition anymore. I’m a slug. laying on the sidelines having a pitty party I guess is what some would call it. I guess there are days I might need pity. Some people have it worse, this I do know. But if I had the cancer, they told me what it was, what the fight would be, the plan, the side effects…then the remission…so done with it fot awhile..maybe for good.. If I got mrsa or gangrene in my leg, cut it off…done. With my bod its too complicated. I’m sick of that term. Yes, it’s too complicated because some moron got in there with sharpi instruments and started chopping around like a monkey let loose on a watermelon. He messed it up so bad, other doctors can’t even begin to come up with a plan to fix it.
I’m supposed to be glad I’m alive. Well I am on somedays. I WANT to be alive dammit! But I want to FEEL alive too! I want to walk, grocery shop, dance, swim, cook, hike, travel…I wanna PLAY!!! Intead, what ya have here i s a woman who can’t do most of those things, atleast not for very long. I can deal with pain…but I want to know if its gonna kill me, is it a blockage? a ichemic lack of blood? Blood clot? Gas? I’m a person who likes anwers. I wanna research what is wrong with me, to find options to fix me. I can’t just sit here waiting to die.
They don’t like smart patients…no they do not…cuz then they gotta do some explaining and answering. That makes em uncomfortable…cuz sometimes I know more than they do…hmm hmm. They don’t like that..
This piece of defective wad of chubby flesh is mine still. I’m not impressed by it. It repulses me. I don’t feel like a woman really. Kinda feel like a pregnant one. Withouts the perks. I love babies, but those days for me are over. So grand babies are who I wanna be playing with. If my blimbo bod can move a bit.
I spent the day watching a Dr Redan in Florida, and his technique for removing adhesions. He seems very thorough. But I’m not convinced he could help me. I have alot of the very thick and tenacious bands of scar tissue, they are harder to cut and quick to return, all these sepra fils they use, I think were used on me and failed, as much of everything tried on me does fail.
Go ahead, mention my negativity…bad karma…I know all of it. I’ve read more positive books/quotes/faith based living, I have tried living like a nun who loves the whole world and just wants love and positivity for all….I do prefer it to the negative side I must say, but you will get more people to talk to you when you’re in misery than with you’e happy…proven pointl. Sad eh?
I did manage to “do the deed’ tonite..this after weeks of Mirilax, Colace, Lactulose, castor oil, prune juice and suppositories…soo woo hoo! One BM a month…and it’s a miserable and painful experience…nothing normal about it. IT’S AS PAINFUL AS GIVING BIRTH TO A NETTLE BUSH.
It’s an odd spot to be in. I WANT TO LIVE! I really do…I want to be with my family. I want to watch them grow. I want to be here to help them, guide them, take silly pictures of them, throw parties for them, host holidays for them…I”M MOM! I want to be here…yet, there are times when the pain take over and I SAY THAT I WANT OUT! JUST END IT ALREADY…but I don’t mean that.
Chronic Pain can make you say and do some crazy things. I find I’m starting to leave my family “goodbye” notes in books or my journal…I look for gifts that have meaning for when I’m gone. I feel I’m racing against a death clock, but I don’t know when the time runs out. I find myself pushing my seventeen year old daughter with information about life as fast as I can…clean this way, wash this way, cook this way, send thank you cards at this time…it’s crazy.I have sooo very many health issues, but it will be the adhesions or the blood clotting disorder that gets me in the end I spose. I’m bettin on digestive…but we shall see. If I could get to a better hospital with a higher caliber of docs like Mayo…and get them to keep me there, running a battery of tests, head to toe and figure out an answer that might just help me, help my pain, turn me back into a living and functioning human being…get the whole Dr. House team involved. Please see me! I’m a person…not a chart!
The doctor the initially perforated my bowel and neglected to notice it then went to Disneyland for a few days while I went to ICU on a vent….yea, I’ve just recently started thinking perhaps he can pay for my Mayo visit. I mean he got his rather large payout for butchering me, then my bills kept rolling to around 2 million….then I have recurring bills from the pain each month, meds, pain docs, pee tests, binders…last months emergency admit to hospital for bowel block/ischemia…the bills are just rolling in…but up to the ten thousand mark and I’m about to bolt. I mean really. These bills are whacked. who could pay these? Its NOT MY DAMN FAULT that this is happening! Call Dr. Cly! He’s rich! Make him pay some of this mess! Am I gonna lose a second home to medical bills? Am I gonna lose a husband who after being a martyr and perfect husband i gonna finally snap and ay he can’t take thi anymore?
Are my kids gonna think or say that they too are tired of hearing it and seeing it each and every day? Maybe so. Am I actually ruining their lives by being here?
I’m sure they worry, thats not good for them. Life i hard enough without worrying bout your parents as your just starting out.
My parents and grandparents are all getting to that state where they need extra help, with yards, meals, cleaning….stuff I want to do…I dreamed of caring for my family. I was a geriatric nurse. But they all know how ill I am and won’t let me help them, which frustrates me.
I want to be someone. I’m at that point where I want to feel I have left something good here in the world. a good memory…was I ever a good mom? What are your memories of the kind of person I was? What did people think iof me/? i REMEMBER some women saying they thought I was snobby but really I was just shy…funny how people can perceive us then how we really are I hate that. When I hear someone describe who I am and its so off target…how does that happen? I have softened as I’ve aged I know that…But life is scary and ya do wat ya do.
All I want is a chance. A chance to be seen by fabulous team of doctors who read my whole case and care and they run many test and find something to help me! Please help me stay with my family to love them longer!
Dr. Geoff Cly…you shoved a trocar thru my intestine and failed to note it…I almot died many time after this…sixteen further repair surgeries…gangrene, flesh eating virus, ostomies, wound vacs, fistulas…it was bad. I wish we woulda videod it. It wa a horror movie.
Durring court Dr. you said you prayed for me…I’m ure you did…you prayed for your butt too I’m sure…why don’t you do the right thing and pay for my medical care??? Even some mental health care…meds? A NEW LAPTOP that has the S key that works???
You Dr. Cly live the charmed life. My family and I suffer daily. I try to be the happy faced actress and somedays I can pull it off…but they are gettin fewer and farer between. Thanks Dr. Cly. In my opinion, you killed me on Nov 4, 2005.
I guess I need an obituary.
I have so many clothes, shoes, purses, jewelery…but what for? I rarely leave the house anymore. They are my “just in case” clothes…for the occassional out to dinner or wedding or funeral…I I guess I just learn to purree my foods and still suffer with digestion. Its the movement of the intestines, pulling the scar tissue all the way down. Lets just add the blood clotting diseae, the degenerative disk disease, the osteoarthritis, the fibro, the bad teeth, the broken foot that wont heal…yea, I’m a package of wth.
I’ve never wanted alot out of life. Just a small, healthy loving family. Wanted to take care of them. Buy them special gifts, treat them to dinners, be the fun grandma who played with the kids and babysat all the time, had alot of pets I could walk and play with, go walking, travle a little…nothin major…just like Tennesee and Colorado, Florida and California…once a year…for Jim. I want to take care of Jim, instead of him caring for me.
I hate being this useless burden. I need a purpose. I need to knwo I’ve done a good job with my kids, and I feel I haven’t…I dont know how, cuz I tried really hard to be a great mom…I wasn’t perfect, I know that. I love my kids more than life, I swear, they are my everything. I want so much for them, and now I can’t do much for them and it makes me cry. They are good kids. Very good kids. They don’t smoke, do drugs, drink…they are honest, loyal, principaled, just great home loving kids, they are close to family and I love that. I’m so proud of them both I could scream it from a rooftop how much I love them!
I can’t just move on…wish I could…the pain says hell no! the pain wakes me up. The pain stabs me out of the blue. The pain burns and feels like I’m being torn up inside. The constant nausea is awful. The huge bloating is so unvomfortable.
I am just at that point where I gotta wonder…should I make a change? Is it to contact Mayo…who I can’t afford…is it to go live homeless or with other family member? Where to go that I would be the least burden…thats a joke eh? Sheesh.
My life woulda been so very different if Dr. Cly just would’ve recognized that he jammed that trocar thru my intetin and fixed it right there…I prolly woulda been ok…went on with life, back to nursing…who knows…right now I would love to work with Hospice patient….we will see what God decides.
Thanks for reading!