Tag Archive | hospital

I’m SCARED

I yell…I’m SCARED

I cry…I’m SCARED

I judge…I’m SCARED

I order…I’m SCARED

I demand…I’m SCARED

I scream…I’m SCARED

I want perfection…I’m SCARED

I want help…I’m SCARED

I want encouragement…I’m SCARED

I want order…I’m SCARED

I want empathy…I’m SCARED

I’m in PAIN…I’m SCARED

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The pain is changing and it’s getting worse. I feel like there is no doctor that will even try to fix the mess that is my abdomen. I’m terrified of leaving my family. I can’t outrun the agony anymore. I am certain noone wants to be around me, because I don’t want to be around me. I’m wound up so tight…every move and every breath is stabbing me harder than ever…the pain causes my jaw to lock with near vomit. I’m feeling hateful and mean, yet sad, ashamed and SCARED.  I skipped my heart test today because the abdominal pain was so severe. I do not know what to do anymore. Why go to the doc? Why go to the hospital? For more tests that I can’t pay for? To hear another dumbass doctor say “I’m sorry, but surgery is too dangerous, it may cause more damage or you may not make it…just pop your pills and drink your Ensure and lay in bed til you croak~!”….

I wish I could go just lock myself in a rubber room…hide from the world, because atleast then I wouldn’t be terrorizing everyone I love. Everyone is either worried sick about me or sick OF me. I am sick of me. I can’t believe they can’t atleast give me pain relief…maybe that’s where I need to focus…on getting better pain control…stop dreaming of a fix…forget healing….just numb me…please dear God…just bring me SOME kind of relief!

I’M SCARED!!!!!!!!!!!!

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Please treat me…

So, if you’re reading this you are probably well aware of my health condition and how I got it. In a sentence a doc poked a hole in my gut during surgery, didn’t notice, left me for dead…I’m now left with a belly full of strangulated and glued together innards that cause a type of pain that is intolerable.

I’ve been living or more like existing with this pain for years, seen doctors who can barely look me in the eye when they say, ‘I’m sorry, but there is really nothing we can do but try to control the pain.” Then they pat me on the shoulder or leg and walk away.

I am left feeling that the doctors around here are in some “boys club” where they all golf together and have a code where they stick up for each other, and won’t or can’t bring themselves to say or do anything with a patient who has been mistreated by another in their group.

Some of the docs I’ve seen have been fairly empathetic, and I felt that they wish there was a simple solution to my situation, but there isn’t. But there have been a couple of docs who treated me as if I had purposely done something horrible to THEM! This one came into my hospital room, and literally yelled at a lab guy who was there to draw blood, then proceeded to treat me as if I was a convict on trial for a crime against the medical establishment! His name is Charles Morrison…that was the first and last time I had ever seen him…I honestly got the impression he may have been a buddy of the butcher doc who did this to me years ago…Geoff Cly. Because he just looked at me with such annoyance. It was bizarre.

Yes I filed a medical malpractice lawsuit against the doctor that perforated my intestine, failed to recognize it, left me in ICU on a ventilator in a coma, to endure around 16 further abdominal surgeries over the next year…the trial didn’t occur for four years after the fact…the laws here in Indiana are completely ridiculous and very much protect the doctor, not the patient. At any rate, the jurors found in favor of the doctor…absurd of course, since he admits he did it, admits he didn’t check it out well enough to discover it, the medical records tell the whole story…but, when you sign the consent to treat form and you are told of “possible” mal-occurance…you are then screwed. Do not get me wrong. I know accidents happen and doctors are not perfect…my fight was just that if you make a mistake, especially a potentially deadly one, that you find that mistake and fix it within a certain period of time. But, Dr. Cly, being rich, had a slick lawyer…a team of em actually…and me, being poor….well, I had a small town guy who meant well, but just didn’t have the time or manpower to fight this claim I guess. The jury was not educated enough in all things medically related to even make a judgment. So, because I knew there was a danger of an organ being perforated during the surgery, I have no case. So, again I got butchered.

 

But, all that’s behind me now. All I want now is for some doctor to actually give a shit and try to figure out a way for me to have my life back! I cannot live this way, the pain is so debilitating I am in bed most of the time. Breathing hurts, laughing, coughing, sneezing and crying hurts like hell. Moving hurts, I can’t eat right (yes I’m chubby…I eat alot of mashed potatoes, puddings, ensure shakes…things easy to digest)…so the docs look at me like “looks like you can eat to me!” but I cannot digest most foods! I get blockages constantly. I can’t eat veggies, fruits, nuts, seeds, fiber. The pain is getting worse, so either the adhesions are growing thicker around my organs and ribs, therefore making things pull and strangulate, or the nerves that are entrapped are causing it, or parts of my colon are dieing or twisting, or there is something else going on in there. All I know is, the pain is getting worse, I’m bloating bad, I’m nauseated all the time, the pain feels like a hot poker stabbing me and tearing me apart. I understand I’m a complicated case due to all the surgerie I’ve had, making me high risk for surgical complications, perforations, death. But with all that we can do medically, I just can’t believe they can’t help with this abdominal mess that THEY caused!!!

I don’t expect miracles. I don’t want problems with anyone. I just want the pain to stop so I can get out of bed and live my life in peace. I want to be able to take care of my parents, my grandparents, my kids, my husband my animals…I want to be a useful member of society, I want to work in healthcare again. I’m 44 years old. I feel 84. I can barely make it thru the grocery store anymore. I’m at the point of placing an ad in the paper for some caring doctor to take pity on me and try to help me! You know that whole week I was in the hospital, none of the docs touched my big bloated belly with their hands. They just looked at me like I was Medusa and they didn’t want to get to close.

Oh, here’s what prompted me to blog today. So, there’s a surgeon here in town who come highly recommended. So I called today and said I would like an appointment. The lady started asking me questions, the normal name, birthdate, etc. There was a point in the conversation after I could tell she had my info in front of her on the computer, she says to me “What is is you expect Dr. Goldstein to do?” I was like “Well, I was just hoping he might be able to examine me and help me figure out why the pain i persisting and if anything other than swallowing morphine allday could be done for me.” She kept talking with the whole, well you’ve been seen by several good docs, I don’t know what Dr. G can offer you that they didn’t…I mean I was having to beg to get a damn appointment…at the end she says, “well, I can put you in for the 19th if you still want to be seen?” by now I was crying…I said at first “No, just forget it…..wait, no…I DO want to see him!” I wasn’t gonna let that bitch decide if I saw this doctor or not! But, I’m thinkin she maybe his nurse and she is probably right, he won’t offer me anything else. Even she said I need to go to “The Big Guns”…which pisses me off, why are there only “good” doctors in certain big cities? I mean Ft. Wayne is big…why do we have shit docs?

So I will go on the 19th, only to be looked at and treated the same way I have been for the past five years. They all just want me to go away. Quit reminding them that they can hurt people. I am a reminder to them that they are fallable, they make mitakes that affect people forever. Do they care? Do they have feelings? Doctors have distanced themselves from patients so much nowadays. We are charts. Not human beings. We are their next vacation, their next boat. I respect doctors, I respect the whole medical field, it’s hard work…they have human lives in their hands. I used to be a nurse,a few of my best friends are nurses. I just want answers. Can anything be done to stop this pain? Is it something that is literally going to kill me? Why is it happening? Should all my intestines be removed? Tube feedings? Ostomy? Try another mesh or spray shield? I feel none of them are taking the time to even try to find answers because it’s such a complicated case…they just wanna move on to the next easy case. That’s a fact and I know it. I need a doc who’s up to the challenge. Is there one? Maybe at the IU Med Ctr…I have a friend who had some of my issues go there and had success, Mayo? They have a big rep and talked nice to me on the phone atleast! Alot of adhesion patients go to Germany, but I can’t afford that.

Crap, it’s just hard living this way. I’m getting depressed for sure, and who the hell wouldn’t? Do they think I enjoy this? Going to docs, hospitals, tests, meds, bills that are taking us quickly down the road to bankruptcy? I mean seriously…wth?

I need a doc who still has empathy. Who still thinks he can make a diference. One who gives a shit. So, anyway…if anyone reads this, do me a favor and say some prayers, I know not everyone is religeous per say, but any kind of faith is good, pray to God, to Jesus, to Budda, hell, pray to a rock for all I care, but just say a little prayer that someone helps me with this problem!

I apologize for misspellings, my keys are sticking, the s is really hard to press…of course my laptop is gettin old and junky. My cell is too, so is Jessies and Jims…and it’s Christmas…being poor at this time of the year is especially a bummer…but it could be worse. We have a home. We have food. Most importantly we have each other.  I’m practically a burden somedays I’m sure, but I know my family loves me and still wants me to stick around…but I also know that they would love it if someone could solve my health problems so that I could be the full mother, wife, daughter, granddaughter…that I was meant to be. I know I’m on this planet to do more than I’ve been able to do so far. I want to help people, but with this body I can’t do much. I can’t even cook or do laundry alot of days…I know people complain “Oh, I gotta go do laundry, or cook or clean, blah” but I would love to be ABLE to go do those things…and I can’t because I literally have times when I can’t stand up strait…today has been a day of tears, doubled over…scared.

So come on…send me to a doc that WILL treat me….please?

Happy Holidays to all who celebrate…thank you for reading…

T

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!

When Do I Wake Up?

This has been a really long nightmare…and I’m really ready to wake up from it. Really, really ready. I just can’t keep this up. I’m dealing with some Bronchitis right now, a yearly thing…praying I don’t spiral strait to pneumonia, I had the shot 3 years ago…am I still protected? Can’t remember, but at any rate, having Bronchitis is nothing anymore. Compared to my everyday pain and disabilities, having a lung infection is like a mosquito bite. But the coughing is really aggravating my adhesions and hernia, making the pain beyond unbearable. But I have to get this crap outta my lungs…its horrid. My breathsounds sound like a squeaky door closing.

Ever since being in the hospital about amonth or so ago, I’ve been in such a depression. Seven days I was there. I did NOT even want to go in. My doc acted like if I didn’t get into the hospital that day, I would likely die…I had held off for a couple days, then relented. Just as I knew would happen, they could do absolutely NOTHING to help me. My case is too complicated. My insides too messed up. More surgery would be just too dangerous. But they ran enough damn bloodtests, catscans and xrays … I’ve recently started receiving the bills…the part insurance WON”T pay is gettin up to around $10,000. Yep. You saw right.

Honest to God…they did NOTHING to help me while in there! Added a couple pills, which I didn’t even stay on once home because they are useless. My pain is unchanged and my digestion is unchanged and my pooping is unchanged! And now my mental status has deteriorated! Its absured. What on earth. HOw can my problem be this dang complicated…the only thing one doc said was to remove all my intestines and go with a bag, but that I may not survive and other organs may get injured because my insides are so glued together…so the odds don’t sound to good to me…but then again, neither does years living in the agony.

All I am is a financial burden to my family. I used to say I wanted to live for my family, that they need me…but do they? I don’t know if I’m even useful anymore. I spend alot of time in bed of course. Always having to say “I’m not feeling well”, “No, I can’t go, gonna rest today”…so many things I want to do. I would love to be able to take the boys more often, take them to parks and shopping. I would love to take my kids out to dinner or movies more often. I would really just love to be able to take a breath without wincing in pain. I want to be a normal mother and wife. Now that our kids are basically grown, its gettin back to just Jim and I…and here I am…a lump of uselessness. I can’t contribute to our finances, I just cause debt. I feel like Jim would just love to dump me and go find a beautiful, vibrant, healthy and financially fit wife! A Wife that could take care of him and do active things with him. I have told him that he is free to go, anytime. I do not want him staying with me like some martyr. I would take the blame, make him look like a good guy and just let him walk…he deserves better.

OMG. The tv is on in the background with some VERY annoying Ebay commercial that just about made my damn head explode! Some dumb girl talking/singing really fast about something…wow…totally triggered my ticked off button!

I want to work. I miss working. I miss being out with people. I miss being useful. I want to be able to help my family with their financial issues. I want to buy my family things. I love to give gifts but being poor does not allow this.

I had thoughts of getting my records and sending them to Mayo or somewhere that has doctors who actually have brains are…but since these medical bills have started rolling in…I’m figuring thats a big freakin NO. That was a tiny glimmer of hope I had…some Dr. House team at Mayo would get me in there and figure out a great way to fix me…so that I could live out my life like a normal human being….but nope. Not to be.

I’m just getting so angry. I honestly have tried over the years to keep some positivity. To read all the positive books. Keeping faith. But nothing good has happened…other than I’ve lived. So I guess that’s what I’ve got. But all that the living has accomplished is more financial debt and emotional stress for me and my family. I know there are people who are worse…I know it. But I also know that most people have no clue just how BAD I ACTUALLY AM! I look pretty normal, and I generally try to ACT pretty normal…I don’t like hunching over, moaning in public…so I sweat it out til I get to the car then I bawl like a baby til I get home and crawl to the bed. The abdominal pain is relentless, it’s every minute of everyday. It will never go away, ever. My digestion feels like knives going thru me, I am limited on what I can eat. Coughing, Sneezing and laughing make me cry…but crying hurts too. BREATHING HURTS! So there are moments where I think if I had another disease, atleast there would be a cure or cut it out or something. The constant nausea. Add in the Fibro, my body feels as if its been a pummel bag for a very pissed off body builder. My spine has DDD and ruptured disks, failed surgery…so moving just sucks. My hips have arthritis that wake me up from sleeping with a burning pain that makes me want to rip my pillow in half. My teeth constantly hurt. This blood clotting disease keeps me in constant fear of stroke. All these meds are poisoning my liver…so its just pain, pain and more pain.

Oh the meds…that’s really a sore subject this week. I have been going to the Centers For Pain Relief for years now. They have prescribed me pills all that time without much change. I have always used the same pharmacy as well and have kept the same family doc. Because evidently there are drug fiends out there who either doc or pharmacy shop or sell or abuse their meds, therefore I must be watched like a hawk and treated like a junkie, as was evidenced by this weeks appointment where it was my turn to take a random pee test. Well guess what? I DIDN”T have to PEE! I also have bladder issues. I only pee like twice a day. My bladder can hold more urine that my urologist says is possible…yet I do it….and I get lots of infections, and sometimes must self cath.

Anyway…they don’t care that my bladder can’t produce. They make u stand in the hall..in front of everyone…and force you to drink massive quantities of water until you CAN pee. I ended up at this appointment for over an hour and twenty minutes. Most of it standing in the hall, in pain, embarrassed, praying to pee. I was in the bathroom on three seperate occassions, hand in sink with water running on it, practically crying cuz I was so frustrated.

I finally went and they gave me the oh so horrible prescriptions and let me leave. Ya know, people with diabetes have to take meds, people with cancer do, people with all kinds of diseases take meds. We treat people who are in REAL pain like drug addicts. I had never felt that way myself until this happened. I thought I was lucky, well and I do everything right. I’ve never asked for extra meds, never taken them in a wrong way, never lost any, always take as prescribed…I have never once gotten any kind of high feeling from my meds…ever. So I don’t really understand how people get high from them or what good they are for that…but please don’t start making me feel icky about having to take these meds that are the only thing that allow me to even try to get thru a day.

So much is getting on my nerves lately, I guess cuz my body is my enemy and the doctor that ruined my body is out loving life. I have forgiven his mistake, but I still hold the grudge that he gets to enjoy his life…and I don’t. I can’t let it go. He ruined me permanently. Doctors in general now just tick me off. They don’t CARE about us. I’ve seen many, I’ve worked with many. We are CATTLE to 90% of them. They don’t care who we are as people. If they can’t diagnose it in five minutes they don’t wanna deal with you…they shove you down the line. Throw pills at you. If none of that works, they decide you’re crazy and move on…cuz God knows they have a two week Italian vacation coming up! They don’t have time for your pesky problems, especially ones CAUSED by their own profession! Scared of law suits. Their God Complex makes them impotent to perform on cases like mine.

All I want is a doc or a team of docs preferably that care. That will take the time to try to help me. Just ease the pain by half. Or give me an easy YET tasty diet that helps. Cut down on these pills, yet still take care of the pain…just help me! There is more going on in me than adhesions and hernias…I know it…but they aren’t finding it, cuz they are not trying hard enough.

Since I’ve been down so much, I’ve watched a bit of tv. Also tickin me off. Dr. Phil has had alot of “young adults” on there who think the world owes them a living. These spoiled brats think they can graduate high school, barely and walk right into a 2,000 sq. ft. fully furnished home, with a brand new car, sit on their butts playin video games, gettin their nails and hair done weekly, full star studded wardrobe, limitless foods, designer dogs with all the fixins….and not work…or work very little…they just think this crap is owed to them!

I moved out at 17 (well its complicated..I moved from home to home from 13 to 17), but my first apartment was tiny…not sure sq ft but maybe like 500ish. I got furniture from Goodwill, used milk cartons with sheets over them as tables…I had a junker car that barely kept runnin, my dad had to do somethin to it weekly to get it on the road…but my point being…I didn’t expect anyone to give me a full blown life after highschool! I knew it would be a struggle. Yes I had money problems and had to go beggin to family members here and there, even moved home…but it just seems kids these days think they should have the best of everything the minute they move out…the big tvs, blue rays, xbox, cool furniture, best decor….I mean…daaaang! Work for your junk! Live BELOW your means! Learn how to budget! Learn to appreciate what you have!

Ugh. Well, that’s my crazy pain lady rant for today…I’m short of breath and just need to lay down again…take some decongestant. Pray for sleep. Thanks to anyone who read this…I appreciate being able to vent…especially when people actually understand my pain a little bit!

Its gettin to be ugly weather….so hope all the fibro and arthritis peeps are hangin in there! xoxo

AND PLEASE!!! SOMEONE WAKE ME THE HELL UP SOON!
T

Blog Carnival Introduction!

Well first of all let me say this is my FIRST blog carnival!  I had never heard of them before my wonderful cyber-friend Jolene (of Graceful Agony) introduced me to them.  What a wonderful idea!  I have had so much fun reading blogs since discovering them in February. Yes, I know blogs have been around long before that, but I just never actually READ them.  That is until I decided to start my own after another friend started one…he has since quit blogging, even though he’s a talented writer and should be writing all the time…but  that’s when I found Jolene’s Graceful Agony blog, and it really inspired me!  She is a wonderful person and a gifted writer and everyone needs to be reading her blog at http://gracefulagony.wordpress.com/ …but enough about her….this blog is supposed to be all about ME! lol (said jokingly of course!) 😉

Me.  Well, at risk of boring most of you I will keep the life history of yours truly as short as possible.  I’m a forty-two year old married mom of two wonderful children, a 22 y/o man and a 16 y/o young lady and of course I love them both more than any words could ever convey.  My husband is very devoted and supportive.  I have two dogs who keep me entertained and provide me with unconditional love and affection.  My childhood was very rough and dysfunctional to say the least, but I won’t type all that out, as it is pretty much portrayed in some of my earlier blogs (The Little Girl). I love to read and to write.  My favorite color is pink…but I wear alot of black and white because its easy…lol.  I love dogs and babies.  My fave tv show is The Office.  I love Steve Carell and Will Farrell.  I love all music, rock, pop, country, spiritual, jazz and more.  I love Chinese and Mexican foods the most.  I like a good margarita once in awhile.  I love good movies…especially the classics…Cary Grant, Bette Davis, Deborah Kerr…those are great movies!  I bite my nails til they bleed. I worry too much. I am a denti-phobe to the nth degree. So that’s a little about me, now here is about my chronic pain/illness!

My “adulthood” was going along fine until about 1998 when I was diagnosed with Fibromyalgia, after a few years of having mysterious aches and pains, and going from doctor to doctor.  None of the meds they ever tried me on helped much…so I just didn’t take anything other than over the counter meds after awhile…and just gritted my teeth and got on with life.

Then I started having pelvic pain that just wouldn’t quit. So in 2005 my OBGYN at the time said a hysterectomy would solve my problems…but that he would leave my ovaries so I wouldn’t go into early menopause.  I was all for anything that would stop the pain that was really affecting my daily life at times. I woke up from that surgery in more pain than he had led me to believe there would be and found out that I had hemmorhaged during the hysterectomy and required a few units of blood…but that other than that everything went peachy…by his standards I guess.

I recovered from that hysterectomy, but continued to have pelvic pain.  I decided in my infinite wisdom to find a different OBGYN as I wasn’t entirely impressed with the other…which now in hindsight was quite possibly a life-changing decision.  The new doc was young, handsome and had a great bedside manner.  He impressed me with his knowledge and I believed him when he said that my pain was probably due to the cysts on my ovaries and if they came out the pain may stop as well.  Now, my thinking was…that of course the pain would stop…there would be nothing else in that area to cause the pain…right?  So, I was too trusting and didn’t do much research into any of it and actually was looking forward to the operation to get those “things” out of my body so the pain would stop. I would take that pain back in a split second compared to the pain I must now endure.

That surgery changed my life forever. I will make it as short as I can.  During the operation the doc punctured my intestine and failed to recognize it.  He went to Disneyland for vacation…I ended up in ICU on a vent and medically induced coma, and remember very little for a few months after the operation except alot of pain and being restrained to the bed to keep from me pulling all the different lines and tubes out.  I ended up over the next year having around fifteen abdominal operations, part of my intestine removed, having ostomies, wound vacs attached to my abdomen where the wound was left open (about the size of a softball) and the hose was attached to a machine that vacuumed out the contents for months, I was fed thru a line inserted under my collar-bone, I had other peripheral lines up around my arm pits, or in my upper arm…which frequently ended up giving me blood infections that I also almost died from, I spent most of that year in 3 different hospitals, and some of it at home with home care nurses and my family working to care for me around the clock.My husband and family became my nurses.  I missed many family events of course during all of this…basically I missed my sons entire senior year and my daughters sixth grade year.  To shorten this section up, I will end it by saying the last surgery managed to close up my abdomen, but the pain is non-stop due to massive adhesions (my insides are basically like hardened cement…organs glued together and to the abdominal wall), the nerve pain called neuromas from the constant cutting, and I have no abdominal muscle wall at all in the front…I have a ventral hernia from my breastbone to my pubic bone and my intestines lay right under the skin/fat layer.  I can’t eat alot of foods due to digestion problems.  I must wear an abdominal binder 24/7 to help ease the pain and hold the hernia in.  I go to a pain center every month and must take narcotics to even take the edge off the pain.  I can’t do alot of the things I used to do, no bike riding, no running, no hard exercising of any kind…basically I can’t do anything that requires using abdominal muscles.  The pain is relentless and hard to even describe to people, it is like your insides are on fire while at the same time being shredded.  To say it makes everyday life difficult is an understatement, but I am alive. Living with pain, but alive.

So, since I know that was long…even though I really did leave ALOT of stuff out! I will finish up here.  About the time I started blogging and finding others out there who were suffering with chronic pain just as I was, there was alot of depressing thoughts going through my head.  I was feeling down and useless at times, and still do occassionally.  But I am a fighter, I always have been.  Stubborn some people would say I guess.  But it’s that stubborness that got me through that horrific nightmare that I lived through…and continue to live through. Stubborness and a wicked sense of humor!  I read self-help books and look for inspiring blogs on the web.  I pray alot. I always said I would continue to live for my childrens sake.  I now feel I will continue to live for MY sake.  Even though there are so many days that I am crying in the fetal position and ready to jump off the nearest bridge, I eventually dry my eyes and decide that I won’t give up that easily.  I want to live, even if it’s with pain that would bring most people to their knees, I want to experience life…to see the beautiful sunsets/sunrises, all the beauty nature provides, and to see my family, my children, my grandchildren.  I love blogging because it’s free therapy for me.  I can vent, I can inspire, I can joke (sarcasm is my specialty!), I can pretend that someone out there actually cares!

Wow…this really did turn out long…if it’s too long I guess my buddy Jolene will have to tell me to shorten it up and I will!  I’m thrilled to be involved in this carnival and look forward to hearing everyones story! To anyone who suffered thru MY long story…thank you for reading!

The Little Girl…Part 9

It’s one of her “bad days.”  That’s how she labels each day of her life now.  “Good days or bad days.”  She’s had been laying in bed all day.  She was loaded up on all her pain medications with heating pad in place.  A stack of books beside her on the bed with a magazine thrown in for variety.  Of course her computer was right there too.  That was a necessity!  It was her window to the world during these bleak days in bed.  She had found many wonderful friends on this World Wide Web!  She could talk to them and they understood her pain…it was a sisterhood of misery so to speak.  She cherished each and everyone of these friends.

It was while reading a book called “Strong at the broken places” that an idea came to her.  She had been struggling with trying to find something positive out of all she had been through…to find some purpose for it all.  While reading about a man who was dieing of Non-Hodgkins Lymphoma…this man, although he knew his time was limited, he would go and volunteer at a Hospice Home weekly.  He felt that since he was living with the fast approaching the crossover to the otherside, what a good match for him to go and help those who were a few steps closer than he!  Now this was her take on what he was doing, not necessarily his.  That was it she thought!  She needed to go help others through their hospital stays!  Afterall, who knew better than she what it was like to be in a hospital?  After spending so much time in the hospital herself, she had been through all the emotions of feeling like a caged animal, of feeling isolated and alone and forgotten.  Of being scared out of her wits.  The not knowing how the next shift would be treating her or not treating her.  The indignities that go along with being in a hospital setting.  She became very excited at the prospect of being able to help others! 

She immediately began searching the local hospitals and hospice homes for a position that she was equipped to perform.  It took her a few weeks and there it was!  A local hospital had an ad on the internet for a “Patient Safety Technician” this position consisted of sitting at the bedside of patients who were at risk of pulling out tubes or climbing out of bed or who were on suicide precautions.  The patients included brain injuries, strokes, seizures, etc.  There would be no lifting or physical requirements!  She couldn’t believe it!  This would be perfect!  She applied immediately.  She prayed and prayed to get this job…she knew it was meant just for her!  Right before Thanksgiving she received the call…she was to come in for an interview! 

Well, to say she was excited would be a huge understatement!  She screamed “Honey!  I have the interview!” she was so happy!  Her husband was happy for her!  She began rummaging through her clothing…she needed to find an interview outfit that still fit her!  She tried on many suits and finally settled on one.  During the interview she was so nervous!  She felt like a stuttering fool!  She left the interview feeling like she probably looked and acted like a moron and wouldn’t get the job.  So much for positive thinking she thought to herself as she drove home.  She walked in the door…to an empty house.  Climbed into her pajamas and laid in bed…thinking of all the dumb answers she had given during the interview.  “God, I am such an idiot!” she said aloud.

The phone rang.  She put down the spatula she had been using to flip hamburgers over on the stove…dinner for the night.  Atleast her husbands dinner, as she can’t eat red meat, hers would be the side dish of mac and cheese.  She answers the phone and it’s the hospital!  She was offered the job!  She was so elated she could barely follow the rest of the conversation!  When she hung up, she began screaming…”I GOT IT, I GOT IT!!  I GOT THE JOB!!!” 

That was one more thing she had to be thankful for that Thanksgiving!  Her life, her family, her friends and now her JOB!  She felt like she was going to be actually contributing now!  To the household, to the community, and most importantly to people who were scared and alone laying in a hospital bed.  After starting the job, it was as she had hoped, perfect for her.  She talked easily to the patients, they liked her, she was caring and empathetic, and to the ones who were able to communicate, she would tell them bits and pieces of her story.  She would answer their questions and concerns.  Some saw her as an inspiration, they felt that since she had survived such a horrible health predicament and come out on the otherside, that they could do the same.  She encouraged them to stay positve, to set their goals and go for it.  They discussed faith and how they felt angry at God…how they felt abandoned…how they felt jealous of their family members who could come and go from the hospital as they pleased…She let them know that all of that was completely normal…that she had felt the same feelings herself.  They would sometimes tell her she had really helped them, had given them hope, had made them feel stronger!  She would go home and feel like she had really made a difference to someone that day at work.  For the first time in a long time…she felt good about herself.  She felt this was what God wanted her to be able to do.  To help others who were suffering.  To be an example of strength and courage.

She spent many years doing this job she loved.  Over those years she had four more grandchildren, making a grand total of five!  She loved them all so much, they frequently stayed all night with her and her husband (otherwise known as Mee Maw and Paw Paw).  Her children and their children would come over every Sunday for potluck dinners.  She felt blessed.  Surrounded by her family, she sat in her chair thanking God for what she had.  When her little five year old grand daughter Sarah came and crawled up on her lap…she hugged her tight and thanked God again…because this LITTLE GIRL would never have to hide under her bed praying to God with fear.  This LITTLE GIRL and all the other grandchildren would be loved and protected.  She rocked her grandbaby and a tear slid down her cheek…one last tear for the LITTLE GIRL that she herself used to be.

THE END

Bring your life to life…stop planning and start living!

thank you all so much for reading my blog!  some of you may know this already, but alot of it is based on my life, with some fiction thrown in as well…I could have put in alot more, but didn’t want to drag it out too much.  I am writing an actual book on this story and hope to someday be published.  Thanks again for taking the time to read it!  I will have many more blogs to come!  😉

The Little Girl…part 7

Cancer!  That is what the doctor said, but what she heard was DEATH!  She couldn’t believe her ears!  “There has got to be some mistake!” This just can’t be happening to me, she kept thinking over and over…I am just getting used to living with Lupus…I can’t do cancer!  But here she was…just beginning to deal with “The Big C!”

It was found during a routine pap smear.  The yearly test women despise.  It was stage 3.  Fairly advanced.  But encapsulated to the cervix.  They recommended a total hysterectomy.  She was fine with that.  She hadn’t intended to have more children.  It was scheduled for the next week.  This was all happening so fast!  She still hadn’t wrapped her head around all of it when she was telling her family.  They all had so many questions, to which she didn’t yet have the answers.  Being an analytical type, she of course got right on the net to research this new monster that had invaded her body.  Afterwards, she wished she hadn’t.  So many sad stories.  So many bad outcomes.  She was scared.  She lay on her bed in the fetal position and cried…and prayed and prayed and prayed.

She and her husband showed up at the hospital at 7:30am.  The surgery was to take a couple hours.  She could go home tomorrow.  She was on the stretcher, donned in the beautiful hospital gown and cap.  Feeling very, very vulnerable and fearful.  She jokes around with her husband and the staff…hiding her fear.  The doc came in, the three of them held hands and said a prayer.  She was wheeled into surgery…she looked deep into one of the nurses eyes…and squeezed her hand, as the general anesthetic was pushed into her IV…a tear slid down her cheek.

She awakens, she feels heavy.  Her mouth feels dry…something is lodged in her throat!  She tries to move her hand to her mouth, but she can’t move her hands!  They are strapped to the bed!  She looks side to side…her husband is there.  “What is going on?” She wanted to scream…but she couldn’t.  She was on a ventilator…the hissing sound as it pumped air in and out of her lungs was audible.  She goes back to sleep.  The next few months are a blur.  She is heavily medicated.  She has multiple hallucinations due to the medications, some were horrifying.  She remembers trying to climb out of the bed.  She has unbearable pain in her abdomen…pain like she had never imagined!  It feels like her belly is on fire.  She is in and out of consciousness and being unconscious is preferable to be certain!

When her mind is finally clear enough to figure out what has happened to her, she can not believe it!  Her luck!  Evidently the surgeon had made a surgical error and punctured a hole through her intestine, this is a complication that can occur with any abdominal operation, but it’s rare, and when it does occur…it is usually noted rather quickly and measures are taken and recovery is generally speedy.  Unfortunately, it was not noted quickly and by the time it was diagnosed, alot of internal damage had been done.  She was septic.  Her intestines had become so infected they were like wet tissue paper when the next surgeon went in. 

She would end up losing a large portion of her bowel.  She would end up with an ostomy…but not a normal ostomy…it couldn’t really be done in the normal fashion, so the bag wouldn’t seal properly and therefore there were always leaks…this caused major skin breakdown and irritation.  She had peripheral lines it seemed everywhere!  In her clavical area, her armpit, her hand…the catheter for her urine…she felt like an alien.

She couldn’t stand to even look down at her own abdomen.  Therefore she could not perform her ostomy bag changes or empty the bag.  She would have to put her call light on and have the nurses come and do it…some of them would get rather irritable with her.  They felt she should do it herself.  But it looked horrid!  Her bowel was sticking OUTside her body!  She was in so much pain and had grown so weak from laying in a hospital bed, it was also just physically hard on her to do anything…she was doing physical and occupational therapy twice a day.  It wore her out…physically and emotionally.  Some days she would just feel like giving up.  She felt like she would never be the same again, would never be useful again…couldn’t imagine living with this pain everyday! 

Her husband was there at the hospital with her everyday.  She lived for the moment he walked in the door.  She knew when he was there she could rest.  Or have someone to talk to.  She wasn’t allowed to eat, and could only drink limited amounts.  She was so thirsty!  The commercials for food and drinks on the tv would just about drive her bizerk!  She was too weak to read, she couldn’t hold the book up.  The only thing she had to pass the time was tv and when her family visited.  She felt somedays as if she was going out of her mind.  She felt like a caged animal…an ABUSED caged animal at that!  To add insult to injury, her hair started to fall out in huge clumps!  She had bald spots throughout her scalp…she had  always had extremely thick and wavy hair…now she is going bald.  Also, she was going through menopause due to the ovary removal…the hotflashes where awful!  She felt like she was having a heart attack frequently.  Alot of the nurses were not sympathetic to her physical complaints.  They acted like she was being a whiner or something!  One evening she complained of being short of breath.  The night nurse took her time coming into her room, even after she had told the cna about being short of breath and having chest pain.  When the nurse did finally come in her room, and took her vitals, she said”Oh, you’re fine!  You just need to work harder in therapy!  You’re getting lazy!”  She could not believe this.  She knew something was wrong!  She was having a heart attack!  “I need help!” She told the nurse…the nurse left her room…she was scared to death she was going to die right there!

To be continued

Breathe, Believe, Be