cRAzy GiBBeriSh…

 

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.
You prick.

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!
God Bless!

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7 thoughts on “cRAzy GiBBeriSh…

  1. Yea, I wrote this when I was really tired. I didn’t proofread, obviously…but most of the mistakes are the dang S button rarely works on here….you have to slam it several times to get it to work and I get frustrated and just skip it. I also could’ve gone thru the above and fixed all the mistakes but it would take more effort. I’m all outta effort. So there ya go…just lettin my legions of readers know I do realize I have typos comin out the wazoo…and for now, it’s okay with me to have them…

  2. Oh Tammy! I feel so bad for you. Pain is a bitch. I have terrble adhesions from surgeries also, and they can be a real problem I know. My bowel habits are ridiculous, never knowing what each day will bring. I have Crohns – and I think the steroids I take everyday for my Addison’s help keep it in check. Your pain sounds worse than I could ever imagine.

    Don’t be so hard on yourself, you deserve as many pity party days as you need. With all the worryng you do, you need to vent somehow. I worry about my kids too…grown men who are still living at home aged 25 and 23. The older one will never leave until he gets married because he feels so responsible for taking care of me. That means I raised good kids….just like you.

    Itis a dirty rotten shame that we can’t have the life that we imagind. I figured, just like you, that at my age (58…yikes) I would be doing so many fun things with my Hubby. I feel worse for him than for me. Hang in there Girl, give yourself the time to be pissed and then you will get back to the Tammy you like. (and we love).

    I would be pissed at Dr. Fuckedmeup, and would never pay one of his bills. Doctors that get away with stuff like that should never be allowed to practice medicine. And that’s what it sound like he did to do…He PRACTICED medicine and fucked you up.

    Thinking about ya!

    mo

    • OMG Mo…your comment literally made me blow water out of my nose! That was so funny! Drfuckedmeup…holy crap….I am now officially adopting that name for the piece of crap doc that literally fuckedmeup. You’re great! I’m crawling out of my pity hole a tiny bit today…I showered! Woo Hoo! Call the news crew! I also plucked my eyebrows…so I am really on fire!

      I am such a crazy bad worrier…but I got it naturally from my Grandmother and mother….and now my poor kids have the affliction also…especially my son…hes 23, has his own home, live in girlfriend with 2 little guys…and I worry about him as if he is a 3 y/o about to run in the street…even though he was a marine and is very responsible.

      Ugh. I didn’t eat anything today…just tea, coffee and ensure shakes…and of course my cup of pills…I am hungry but its just not worth the pain today.

      Thanks again for the laugh! I love laughing, always have….I miss the big ole belly laughs…where I laughed til I cried and rolled around…outta control…my son and I usta do that watching comediennes and stuff…but I hafta be careful now of my hernias and adhesions…hurts. Another thing drfuckedmeup took from me. I wanna punch him in the face. lol

      Luv ya Sis!
      T

  3. My dear you have every reason to have a pity party now and then…I have them too!

    I recently thought that I feel like an old person just waiting around to die. Well, that just won’t do! I kept looking for a purpose…I don’t have kids, it’s just me my wonderful hubby and the furry babies. Finally, I realized, I was making a difference with my blog, and by reaching out to people who reach out….like you.

    Within the past week, I’ve had 2 people tell me that something I said changed them…that is amazing to me. I may not have a slew of readers, but the readers I have are more like family than a lot of my own family.

    You said you don’t feel you’ve been a good mom, then you turn around and say how honest, loving…your kids are. No drugs, no trouble… What do you think they got that way without your influence? Mom made a difference there!

    And Dr. Fuckedmeup should pay….out the butt hole! He shouldn’t be allowed to practice medicine.

    I am very lucky that I live just minutes away from Duke, I found some great doctors there. And they don’t mind that I’m smart. They actually have answers! Imagine that! I had an ENT for 7 years treating my Meniere’s (it’s a vestibular issue that is progressive and causes vertigo, hearing loss, tinnitus, and aural fullness….plus balance issues galore!) When I went bilateral, he told me, “I really don’t know that much about Meniere’s” What? after 7 years you are going to tell me this?? At that moment, I said, “You’re fired!” Not, I’m not going to see you any more…nothing nice…just “Your are fired!” He offered to recommend a specialist, and I shook my head, I’ll find my own, I really wouldn’t trust anyone you sent me to….so I got on line and did research, read doctor’s bios…and found two specialist in the area who weren’t just ear docs, but they had special interest in Meniere’s and vestibular issues. Now I’ve got a wonderful doc. I’m in a research study…it worked great for a few months, but now…not so much. Vertigo every day…can’t move my head, can’t drive, can’t cook…it’s very hard.

    What type of diet do you have to be on? I’m not a nutritionist, but I’ve had to deal with more than a few restrictions in my diet. I have gluten and fructose intolerance and hypoglycemia. I understand that you can’t live on Ensure. When my mom had cancer she had to drink that, but I kept her well fed…with what she could eat and keep down. Her oncologist said she’s the first person she’s met who gained weight while on chemo.
    So maybe I can help…try to figure out how to do it, and make it taste better.

    You have a purpose my dear, you tell us it’s ok to feel like shit some days and tell the world about it. I understand that you don’t want to die, but you don’t feel like you are living.

    Keep moving forward. Like the sharks at the bottom of your blog, we must keep moving to stay alive…even if it’s just our brains.

    thank you for offering to take me on the girls trip with Laurie and everyone. If we could just hit the lottery! But then I’d probably be too dang dizzy to fly! : )

    hang in there honey,
    you have a lot to do yet. (I’m 4 years older than you, we were planning on having foster children and adopting…that’s not going to happen now…Yes, my life isn’t what I expected it to be….so I need to change my expectations, dang it!!)

    hugs to you.
    wendy

    • Thank you Wendy, you are awesome! my diet is really difficult, I’m still trying to figure it all out. I can’t eat red meat, no raw fruits or veggies, nothing gassy (brocolli, beans, etc), low dairy, no nuts or seeds, no fiber, tomato products seems to cause issue at times but not always…It seems that junk like pastries and white bread products dont hurt much. Mashed potatos are fine…usually the fake flakes with water is my normal. Bland chicken is okay. Fish is okay. It just gets difficult to have normal meals with my family or to eat out….can’t just grab something tasty out of fridge and go, I break down occassionally and eat a slice of pizza and almost die a few hours later. I’m not very creative with food. I used to love a good steak or mac n cheese, spaghettie, garlic toast, chili, goulash, hamburgers, ham, eggs, raw veggies and dip, apples, granola bars, tomato soup and grilled cheese….but it all causes too much pain and misery now. I have books on eating no gluten and it all seems too complicated…I’m not real ambitious…I just want to have an easy yet tasty diet. So, yea..I guess alot of us have had to change our expectations of life. I think I am more angry that most of my issues were CAUSED by the medical profession…and yet they can’t fix it. So I carry alot of frustration and anger over it I spose, which doesn’t help. I am thankful I have friends online who live with some of the same issues as I do and they understand me. Your and my other friends comments on here really do help me get thru my days. Thanks again Wendy, Laurie, Julz, Phylor, Mo….Your all great!

      • This is the diet I have to follow now plus no gluten http://www.taste.com.au/news+features/articles/2752/low+fodmaps+diet
        I’m also supposed to be following a diet for low acid, but it’s just so hard with the rest.

        I understand not being able to eat out.
        I usually get plain chicken breast and a baked potato.
        Luckily I can eat red meat.

        I too can’t eat nuts, or beans…many of the “gassy” foods you mention.
        I have found that chicken stock (broth) is wonderful at helping when my tummy isn’t happy. Especially if I’ve made it. It’s great for digestion.

        I’m having a very hard time now since I can’t eat onions and garlic…ummm, the staples of my diet! I used to put it in everything!
        Really a gluten free diet isn’t that hard. when I first started I just avoided all bread products (cookies, cakes, pasta…anything that might have gluten), I ate fresh veggies, fruits, and meats…oh and I can eat dairy, and eggs.
        Then all the wonderful Gluten Free foods hit the market…well they aren’t all wonderful, some are crap! But there is good pasta out there.
        Tomatoes usually cause more problems the more they are processed…what I mean is, a raw tomato, or even just cooked tomatoes (but only a small amount of sauce) is usually ok, but tomato paste, or jarred sauces…oh no!
        I found a spice that is a good substitute for onion and garlic…but it’s not the same.
        You say, bland chicken and fish…you can’t have any herbs or a little lemon juice either?

        I like to marinate chicken breast in lemon juice and basil, you can scrape if off when you cook it or afterward, but it will give it a good flavor. can you have rice? I’m only supposed to have white rice or brown in small quantities.

        Do you like to cook? or are you just sick of trying all this?
        feel free to email me if you want to talk more about our food issues.
        I haven’t been able to cook much lately, so hubby has been cooking, eating way too much like we’re in college…and gaining weight. But vertigo and knives and hot pots don’t mix.
        you can email me at apicnicwithants.gmail.com

        Can you not eat eggs?
        a lot of your diet sounds like a mixture of fructose and gall bladder diets.
        that’s difficult! low in fat, and low in fructose, fructans…ect.
        hope we can figure something out so you will feel more like you can eat some thing with taste.

        hugs
        wendy

  4. Oh, I can’t completely understand how you must feel knowing that your doctor did this to you. but I sympathize.
    When I had a tumor in my right arm and they removed it, (they took a bone from my hip and put it in my arm), they didn’t give me any physical therapy, my arm was frozen for a long time, and still I don’t have complete range of motion. I do understand a tiny bit how doctors can really screw up and not admit it. I had two hip surgeries, to find out I really didn’t need them. So now part of my leg is numb and part is hypersensitive.
    I’m bipolar and one doc decided I wasn’t really, took me off my meds, said it was all because I’m hypoglycemic…turns out I really am bipolar and almost killed myself because of his stupidity.

    Non of this compares to what happened to you! But just know, I feel for you. I was telling my husband today that I just hate what you are going through and am so mad by what happened to you!

    He was livid.
    (I have a very compassionate husband, even though he doesn’t think so.)
    If you ever want to come to Duke to see anyone, you are welcome to stay with us.
    I don’t know if they have anyone who can help, I’ve had some great docs there and one bad apple. (the one who operated on my hip, then when I wasn’t better, he called me and told me he couldn’t help me any more and wouldn’t help with my pain management. Called me! couldn’t tell me face to face…well, at least I didn’t have to pay for an office visit.)
    I actually have a few more bad doctor stories, but I’ve learned a lot, and I’m better at dealing with them now…I bet you are too.

    again, hugs to you my dear.
    wendy

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