Tag Archive | adhesions

Insult to Injury

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“If there ever comes a day when we can’t be together…Keep me in your heart, I’ll stay there forever!”  I love this quote. I’ve had reasons to contemplate death alot as of late. A family member passed way to early. My grandfather is battling aggressive prostate cancer. My 93 y/o grandmother is declining, my own health continues to unravel…with all its painful agony and the medical community having decided I’m far to wrecked to even attempt any further surgeries to even try to  alleviate some of my intense pain, to try to open up the tunnels of my intestines to working order again…to try to get my digestion to start working normally again…but no. Everyone I’ve seen has notified me I am to big a risk for them and for rmyself…that it would cause more problems than it would solve. But yet they can offer me nothing more than a handful of strong medications to help ease the pain…it does far from that let me tell you…it eases very little…just enough though that I do take them. They may afford me a day where I can actually clean my house! Fold my clothes! Brush my dogs! These are big things to me! People think I’m joking when I say mopping my small kitchen floor is no different than climbing Mount Everest to my pain riddled body. I did it this past week…the pain and agony I’ve had since then was not worth it. My abdominal adhesions are burning like hot coals have been inserted into that melted, folded, infected piece of cadaver mesh they placed over my open organs after the muscle wall had been cut away….the adhesions have my insides glued to each other, to other organs…breathing, laughing, sneezing, blowing my nose…all cause the most excruciating agony…but the “pain management team” try their best to follow all the docs direction to just manage her pain until the trauma the medical profession themselves created gets to the point there is no option but to make another cut into the now deformed and misplaced organs…to find the possibly fatal blockage or gangrened piece of intestine that needs to come out…to save my life, even though many have said I would never make it off the table. What kind of hope is that to give to an already scared and suffering patient who has been let down by the medical community? I have had no hope since 2006. But my health has gradually been going downhill since then.

I’m to the point of only drinking Ensure, mashed tatos, Ramen noodles and white breads and Saltine crackers…with the occasional small piece of boiled chicken or fish. No garlic or onion. No beans. No nuts or seeds, no dairy, no fruits or veggies…just a low residue diet…oh, and lots of Gatorade. In the last month the pain has increased and the BM’s have greatly decreased from maybe 2 a month to one..maybe, but its either an impaction the size of a volleyball that requires all of a labor process ending with me in a bloody, tear stained lump of exhaustion on the bathroom floor…or, the newest, me waking up in my own waste with no warning whatsoever…I have no indication when I need to go…but it sneaks out in my sleep…not alot…but enough to be a real bad morning surprise.

So I call this Insult to Injury…Not only was I butchered to the point my insides will never be functional and I must live each minute of my life in enough pain that seriously make me question if I want to continue on in this life…but now I must face being incontinent of stool, where I feel I can’t leave my home in case it should happen while I’m out…I was already a prisoner to my pain, but now must add my bodily functions to the handcuff chains that bind me here.

The hernias themselves are hurting more, now also the pelvic floor prolapse, making it feel as if there is a tree trunk inserted in my female parts at all times…this is not a pleasant feeling to say the least…it is miserable and is making me feel less and less human each day…certainly less female or womanly.

I’m not giving up…though I must say in the past 2 months that HAS seemed the only thing to do…throw in the towel…stop trying…stop thinking anything will ever get any better…just stop! But nope…that’s not me…I’m gonna keep on fighting…keep researching for an answer…keep looking up doctors who might be able to offer me something…maybe not a miracle but just a little something to make my life a tad less crappy…I sill keep looking…cuz I have things left to do in this world!

My son and his fiance are having twins next May or so, and I need to be here for them, to help them with this joyous addition to our loving and tight family! To be here for the grandsons already here who are now preparing for having 2 new siblings…they will be needing their own extra attention and I wanna be here to give it to them!

My 18 y/o daughter who is as beautiful on the inside as she is on the outside needs me here to help guide her thru all the new things life is coming at her with since graduating highschool, having a learning disability forces her to fight battles of her own as far as further schooling and finding a suitable career that she can attain within the scope of her disabilities. She is such a beautiful, funny, innocent, naive and loving human being, who deserves all the joy she can get out of life…and she needs me to help guide her.

My husband who has been my nurse for so many years still needs me around, though I can’t imagine why he would want me here with all the mess I bring to his world…me being ill all the time doesn’t make for a very attractive wife…no big nights out on the town…can’t even clean alot of days…thankfully Jess kicks in there…but Jim still needs me…so I can continue to tell him the “right” way to do everything of course! lol I don’t know why, but he claims he still wants me…so I’m his.

I’m gonna keep fighting…keep trying to help others whenever I can … do what I can to leave something good for my family.

Thanks for reading the ramblings of a very tired, sick and frustrated middle aged woman…I’m not checking spelling or anything, my writing is free flow and just the way I talk mostly…hope it made sense. Have a great week..

Tammy

 

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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

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

Where am I?

 

Who snuck in at somepoint in the middle of the night and took my body? This taped together hunk a meat cannot possibly be the body that
God intended me to go thru life with? Am I being punked? Is that cute Ashton Kutcher gonna pop out and say “Noo! We have your young healthy body waiting for you in our shop! It’s been revamped and will get you thru the next 40 years without any illness or pain whatsoever!

 

I would be able to run thru the woods again! Ride a bike on the trails. Hike a bit in Tennessee. Get down on the floors with the kids and get back up without grunting like a stuck pig. I could bendover and pick up something I’ve dropped and put it where it belongs without going down and not being able to straighten up.  I could pull the sheets and heavy towels out of the washer by myself.  I could run the vacuum allover the house, without my gut dropping so far forward I can’t move. I could go to the Y and swim and walk their track…take a yoga class! OMG, that all sounds amazing! I have a friend who wants to take me to the Y as a guest…I’m gonna go. I’m gonna try water exercises…if it all works out, and I feel comfy I will start my own membership…

This body is giving up. Little by little, organ by organ, it’s just throwin in the towel…and it’s up to me to stop this giving up. I gotta keep moving or I’m gonna be bedridden…those are my choices. I’m not giving up. I’m gonna force this body to move more, even when the pain is eating me alive. I don’t have to overdo. I’m not gonna be a weekend warrior. Just some easy does it exercises. Maybe meet new people.

There’s gotta be more to life then this. If this is it…then fine. I can deal with it, but I need to know that I cant improve anymore…that I have nothing to accomplish or to offer the world. Because I believe I do. Not sure what yet…but I’m here to do something! I feel it! I have a purpose! I need to get something done.  I know I’m passionate about animals and children and reading and writing. Maybe there is something there that I can incorporate those passions into something meaningful?

I used to love volunteering, but even that became too much for this body. But I know there’s something I can do. I feel it. Now I just gotta find it.  I’m thinking I need to let new people into my world. I keep my core peeps close and rarely make new friends. Maybe I need to do that…maybe a new friend will have a fresh perspective on my situation, or a need that I can fill.

I also found a “church” type get together at a local coffee shop…its come as you are, no matter your beliefs, it’s laid back, it has changing topics that get covered during the hour long visit. The one I’m gonna check out is on stress and illness.  And I’m truly hoping I can get this body to go to the Y on a routine basis….get in that pool and help out these joints and muscles…even bouey my big ole hernia belly! Water relaxes me so much. Maybe I can even work up to walking the track, slowly of course. I’m not gonna be there to impress anyone of course…but just to help this ole body get some of its oomph back. I used to be a good runner and swimmer! I was a great softball player…had a great arm! I was competitive in gymnastics and other things. I lost all that after I turned about 18 I guess.

This pain monster has swallowed me up. I haven’t been here since November 2005. I’ve been a shell. A sad and hurting shell. Well I’m trying to come back out as me. It may take me awhile to get my bearings, but this pain…isn’t taking me down. I say “FINE pain! YOU go ahead and give it all you got!” cuz ya know what? “Ive taken your bullshit for five long years, pain that is just indescribable! The humiliation of having to push my belly against the counter or a door to blow my nose, holding in my belly if I laugh or cough, being afraid of food, not going out, worrying about dieing and yet thinking it would be easier. I’m tired of making plans in advance then having to cancel cuz the pain man won’t let me get out of bed that day. I’m tired of being in the middle of the store with a cart full of groceries and freezing because my belly hurts so bad I can’t breathe or walk…so I stand, sit if there’s a chair…but I freeze and shallow breathe til it passes somewhat then I head for the register, sweating perfusely by this time from trying to deny the fact that I’m in enough pain to pass out right there in the store on the cold hard floor.

I’m tired of smiling and saying fine to everyones “How are you today”….they don’t want to hear more…so fine is my only line.]

I’m going on 44…but in my head I’m still 29 ish. My mind feels pretty sharp most days…with the occassional fibro fog or med fog. But I know thee is something I have to give to this world…I know it. Some may find it silly, and I undertand. But I’ve gotta work thru this.The pain is here whether I’m in this bed crying or out in the mall shopping. Yes, it hurts much more…but if I give up then IT wins. I’m getting my competive spirit back…and I don’t like to lose…so go ahead Mr. Pain…get your shit ready…cuz I’m sure as hell gettin goin on my resurrection back into the world.

I will still have down days, of course. But even when I’m down…I’m gonna be thinking and planning on what I can do the moment I’m able to sit up or stand up. Maybe it’s just writing..I have a few real life journals going, as well as this blog. Having conversations with people who inspire me and have been published. Meeting new people in the cyberworld who are more like me than I would’ve ever believed! I’m certainly not alone.

So, I guess I”M RIGHT HERE! Right where I’m supposed to be. I’m doing what I’m supposed to do…with much more to come. I used to be more athletic…competitive…I can’t throw in the towel just yet. I got more to offer for this game.

pain or PAIN?

 

Wow.  I can absolutely not get a day off from pain.  I usually gage my days as normal pain and bad pain days…But the past two days have completely slapped me in the face with another level of pain…one I have definitely experienced before, back in 2005 and 6 when my intestines were on the outside of my body….the pain there has been a constant one, varying with different movements, levels of breathing, foods I eat, etc.  This pain, this PAIN…has me unable to move, breathe or eat.

My abdomen feels as if there is a wildfire burning thru my entire right side, with an occassional piercing knife jab here and there.  It’s hurting me so badly just to lay here in bed with the computer on my lap.  Not moving at all.  Why? All I’ve eaten today is a potato and a yogurt.  But I think it could be still from the Burritto I ate yesterday, I don’t know for sure though.

With all these adhesions and scar tissue, my intestines have strictures…so they are very narrow in spots, and perhaps glued almost together in areas.  They are pasted to my liver for sure, and I believe thats where alot of the pain is coming from too…but who knows.  I only know that I’m hurting…alot.  I’m scared.  Your intestine can perforate from the pressure when foods don’t go thru easily, mine moreso than others because of the issues, I am also at risk of “Toxic megacolon” due to all my problems and medications…where your colon becomes huge and poison seeps thru the intestinal wall into the bloodstream.  Severe obstruction and ischemia are also included in this nightmare of possibilities.

I have no real options.  My abdomen is “inoperable” the doctors have told me. Nothing they can do, as there is no abdominal wall and it’s just all “too messy” in there.  So what?  So I just suck it up? Just keep eating medications?  This is ridiculous.  If I had one of my other organs go bad they can put a new one in…and then I’d be up jogging like new…but because some butcher of a doc went in there and wreaked havoc…I have no recourse? No way of hoping for a normal life?  Pretty much.

But I am now praying for a normal pain or even a bad pain day…cuz tonights PAIN is more than I can take.  It’s really freaking me out and I’m hoping if I tell the nurses at tomorrows Pain Clinic visit can help me out…I dunno if they will order another scan or what…just had one not too terribly long ago…in fact just paid it off…God.  What a mess.  Back to praying I guess…hope someone is listening.

Feelings

Feelings. What are they? I’ll tell you what they are, they are all I can seem to discuss as of late. How I”M feeling, how OTHERS are feeling. What are YOUR pain levels? What are MY pain levels.  How many doc appointments you going to this week as opposed to me…what new med are you on? How does it make you feel? Side effects? Any relief? How bad are the adhesions ripping me apart this night or that night, how bad is my broken foot throbbing tonight, how’s the nausea? Headache? Back spasms? Left hip?  Energy levels? It’s easy really….Everything hurts worse than normal, drugs suck and so do their side effects. Fake interest in my health doesn’t help anyone. Yes, I get you have a life…one where you jump out of bed in the morning after a great nights sleep and you have a pep in your step as you brush your pearly whites and swish that Scope…check your nose for rogue boogers…grab a tasty Latte on the way to work…jamming to the latest tune…thinking about working out later…going to the Y, or maybe your work gym.  Maybe you have to stop at the store on the way home and grab some grub for dinner…zip thru the checkout lane…no problem!  You’re feeling great, your job is great, your family is great and most importantly your health is great.

This is what makes my FEELINGS seemingly very different from so many. I feel SICK. EVERYDAY. It’s not going to go away. It’s slowly killing me…I wont be making a recovery. People seem to think I should be “well” by now….”how long can this last?”  “Cant she go to a doctor? Have surgery?” How bout a bigger med center? “Maybe its the pills making her sick” “maybe she needs another medication”….or my favorites:  “She Looks GREAT! ” “I saw her out the other day…looked like she was smiling and laughing and having a good time!” “Saw her at the grocery store the other day! She was loading up that cart!”

Well, I’ve tried other doctors, Cleveland Clinic, all the moron ones here in Ft. Wayne…they all say surgery would only be done in a life or death situation, because my situation is so unusual and my insides are so scarred and twisted and glued together, and laying right at the surface, trying to find a place to even make the first cut would take a team…who couldn’t give definitive answers.  Better to just live with the pain and be glad I’m alive! I shouldn’t FEEL frustrated that the medical establishment made me this way. I should feel elated that they managed to save my life.

When I wake up, my first thought is on my belly cuz ive moved or inadvertently stretched and pulled those adhesions and they are barking back at me. I sit up and get my pill box, swallow my pills..hopin they kick in FAST.  I walk hunched over to the restroom for all that needs done there…I come out in search of coffee, but if its not alredy made…forget it…I’ll nuke some tea or have juice.  Jim starts discussing what we should have for a meal….I let him know that my FEELINGS on that subject are not registering yet.

My adhesions are growing around my other organs…it’s like an evil beast inside me….like a rubberband spiderweb. Every breath hurts, coughing, laughing and God forbid a sneeze bring on big FEELINGS. Mostly I just spew out vile cuss words that are aimed at the doctor who butchered me and his devient lawyer who got him off.  That was  a cut and dry case…and my FEELINGS on that are we were SCREWED.

My feelings on people who just do not get it. I don’t blame them. They don’t live it. How can they get it. I can see how it can be confusing to see me shopping, dressed,. make up on, hair done….I look okay….but look a little closer: My eyes are bloodshot, they are tired with no spark of life, my smile is stiff, my walk slow and now with a limp and shiny purple cane.  I walk slower, I search for places to sit and rest due to the pain that has shown up full force as i’m in the middle of Wall Mart. Im sweating profusely just due to the pain and trying to look normal like nothing is wrong.  I can’t think strait. I just want to go home to my bed. I hate this.  I hate people looking at me. I hate feeling foolish. 

I hate NEEDING help from people. I’m not good at asking fot help…other than from my husband and daughter…I ask them for lots of help around here…bet Jess can’t wait til she can move out like her big bro so she wouldn’t have to be here to have a ringside seat to my circus of FEELINGS.

I laugh, I cry, I scream, I pray, I cuss, I fall to my knees and i plead.  I plead to God, to the Angels…to anyone out there who will listen and care. After so many years of this your family and friends learn to tune you out…Its the same complaints everyday…they get sick of hearing it…I get sick of saying it. I try not to say it…but it comes up here or there…like “Hey, mom…can u drive me to the Mall today after school?” “Well, depends on how i feel I guess, but probaly” “Oh mom, you’re always sick but you can always get the job done. Which is when my Linda Blair head comes out and starts spewing that I get the jobs done cuz no one else is! I go into my laundry rant, dusting, garbage, dishes, dog hair…I let loose…but I get from one “I’m working 12 hours a day and do what I can” which I can’t argue with, I wish he didnt have to do anything but come home and veg. I get from the other one  “I’ve been being tortured at school all day with stupid teachers and I need some me time!”

I hate being asked How are you feeling today? I always say fine. No one cares how Im feeling. They get the glazed eyed look of omg, here she goes with her pain and sickness. Dont they know I would much rather be talking about going to the Y to swim! To go for a long walk thru a woods and have a pic nic. To go to a great rock concert…maybe Kid Rock or Aerosmith.  That I would love to zip thru this house and clean it from top to bottom all while blaring my Rick Springfield cd’s and reliving the 80’s!  That I would love to learn Pilates! I would be thrilled to be able to play softball once again! That I would love to sit and read a book in under three hours like i used to. That I want so badly to help others…to go to homeless shelters and help, to help abused women and children, to help save unwanted animals. I want to be there for my grandparents, parents and kids and husband for all their needs and desires. 

Right now FEELINGS are taking control. They are allover the place. Im sad. Mad. Frustrated. Pissed. Lost. Alone. Angry. Unappreciated. Scared. Hurt. Miserable. Up one minute, in the hole the next. I feel like i’ve been targeted to live in misery…its been bad since birth…when do I get to feel normal?  When do i get to experience living in a body that is perfectly healthy? Not even perfect…maybe just remove a few of my afflictions…I mean Adhesions that are taking over my abdominal cavity grabbing my organs and pulling me apart, tumors on the nerve endings from the 15 operations, loss of part of intestine and severe strictures make eating almost a miserable event, the Degenerative Disk Disease in my neck and back…constant spasms and knots, my Interstitial Cystitis where my bladder is on fire, Fibromyalgia where all my muscles and joints hurt so bad and the brain fog that tags along, the Antiphospholipid Syndrome that makes me high risk for more blood clots, so I must take blood thinners each day and keep tabs on my blood levels or I can die either from clot or internal bleeding. Anxiety problems. My teeth are getting worse by the day and the pain is bad. My eyes ache constantly, and give me migraines.  My left hip has been out of socket for a month from walking with a cane due to my right foot being broken…its taking forever to heal, and costing me  lots of medical bills.

I used to be a person. I used to have a life. I was vibrant. I was fun. I sang, danced and laughed loudly. I was good looking, I was funny and witty, I dressed well. I loved walking thru woods or graveyards. I loved swimming or just being near a body of water.  I loved going to the mall and walking around all day. I loved riding my bike. I loved trying out new exercise tapes…knowing I’d give up…but hey…it was a hope!  I have (had) a job I loved as a patient sitter, which I can’t do until my foot heals…I had a life too.

Now I’m in bed alot. With people wondering under their breaths whats wrong with me. But not really caring to know what is.  On the days I do get up dressed with make up…I’m so exhausted I must rest in between. One outting to a store knocks me back to bed for a couple more days.  I’m still inside this body. I’m in here. My feelings do count. They get hurt when I feel Ive been treated badly or been taken advantage of or lied to…or even worse patronized by people who do not know what theyre talking about when it comes to the multiple diseases I have. These diseases are life threatening. I don’t have the flu and I’m not depressed. I have multiple illnesses atleast two of which could kill me. 

So my FEELING is that Im sick. I hate it. But  I NEED friends and family who get that and who can work around my illnesses to still have relationships with me, don’t avoid me or leave me out of plans until you know Im too ill to partake. Feel free to pitch in when it looks like I need help picking up something I’ve dropped or if something needs done around the house.

I’m FEELING the only ones who understand are the other “chronics” out in cyberworld who are suffering like I am. I am lucky in that my family really tries to help me, they just sometimes don’t know what help needs done the most, or they have different ways of doing things, or they have lives of their owns and just don’t have the time to mess with my piddly problems.

My Grandma is 90. Her knees are bone on bone…its awful, and her feet are deformed from arthritis…but shes proud and she muddles around on that can or her walker a bit here and there. I call her daily, the conversation is always the same…it comes out of my mouth before I can stop it:  “How are you feeling today?” I KNOW how she’s feeling today, cuz it’s the same as yesterday…but I ask cuz I want her to know that I CARE about how she feels….so I guess thats why we ask….in some circumstances we do care how someone is feeling. But only ask if you really care and can really handle the answers.

I don’t know if I will ever feel better than i do right now, or if I will just continue to decline. I have a wish that I would find a caring doctor that was up for a challenge and could go over my rather extensive medical files…all of them, starting from having encephalitis as a child clear thru the fibro/lupus and botched surgery that really brought me down. Have him study it. To talk to me. To really care. To WANT to help me…..like the show House…he’s a doc I want! or anyone who really wanted to help people, to care about people…thats what I wish for.  A doctor who KNOWS me. KNOWS my history. Cares about my FEELINGS.

My feelings today are lonely, sad, feeling useless, fed up with pain, sick of people who are only absorbed in themselves and in seeing how much they can get, wanting, wanting, wanting, but they don’t want to work for all these wants…then have the nerve to act like their feelings are hurt or crushed, some people just don’t know how good they have it. Even i know with all my problems, I am blessed, because I know there are many others out there who are sooo much worse off than I am…so many. That is why I do try to make the most of my life…even if in a limited way…I want to find a way to help other people who actually NEED some help…Not the drama queens/kings who blow things out of proportion or lie about their conditions….nope, not them.

How am I feeling now? Well, the pain is ripping my belly in two…BUT my mind feels clear now since I purged it all out finally…My neck is in spasm and my foot is on fire. It’s another night of insomnia for me. But……………

You are certainly welcome to ask me “How you feeling lately” tomorrow! I may just tell ya!

I don’t have the energy to find pretty pics to put on here tonite or to check it over…just gonna post it.

thanks for reading and for caring, sometimes i find it interesting that the ones you want to understand you the most, are the ones who don’t take the time to know you, but that’s worked out pretty good cuz I’ve made some pretty awesome friends on here!

Butchered again!

I look so good...what could possibly be wrong?

Dr. Butcher wondering why I'm upset?

On November 3, 2005 I was butchered.  On September 30, 2010 I was butchered for the second time.  The first time as most of you know was during an ovary removal…by a doc whose name I won’t reveal quite yet, just in case.  Now during that surgery, there is no question that the doctor punctured my intestine with the trocar (a spear type intrument that pokes the initial hole in the belly for laproscopic procedures).  He failed to note this 5 mm hole, even though he knew he had gone thru the omentum which is a filmy covering that lays on top of the intestines.  He also ended up having to cut me open (laparotomy) due to finding adhesions in the pelvic cavity and not being able to get to the ovaries the way he needed to.

Now it may or may not matter to this scenario at all, but he was scheduled to leave on his family vacation some hours later (was his mind on the surgery or on his flight plans?).  At any rate, he left me in ICU and went to Disneyland.  For three days in ICU I grew more and more ill.  High temperature, delirious, swelling, copious drainage from the incision.  My husband kept telling the nurses, who said they had told the doctor on call for my original obgyn.  The nurses were even getting angry that the group doctor wasn’t doing more.  Finally on the fourth day a general surgeon was called in.

When she cut me open from breastbone to pubic bone, she was aghast at what she found.  My abdominal cavity was so full of infection that my intestines were the consistency of tissue paper and literally fell apart in her hands in sections.  But she could clearly see the hole that went thru one side of the small bowel thru the other right under the umbilicus.  She didn’t understand how it was missed.  My abdomen was left open for almost a year, first about softball sized opening, gradually to about a pingpong ball for my intestine to poke thru.  I had a wound vac attached to drain the infection.  I wore ostomy bags to collect waste.  I had drainage tubes.  I had central lines in my chest, peripheral lines in my clavical area, IV’s in my arms.  I was fed intraveniously.  I was in a coma and on a ventilator, as I went into respiratory failure due to the sepsis (blood infection).  My family was told to get my affairs in order in the beginning.  I endured around sixteen further surgeries to correct the damage, some to remove parts of bowel, some to debride the dead tissue.  I developed necrotizing faciitis (flesh eating disease) in my abdomen.  I had pneumonia (hospital acquired).  I had many blood infections due to the various lines.  I developed blood clots.  I had to go thru physical and occupational therapy to try to build my body back up.  My hair fell out due to stress and nutritional deficiency.  My electrolytes were dangerously out of whack at different times.  I spent most of a year in three different hosptials, including the burn unit and a nursing home type floor.

I missed holidays and birthdays.  My son graduated high-school and left for Marine bootcamp and I wasn’t able to celebrate with him and the family or prepare him or send him off as I would have had I been able.  The day he left for bootcamp, I truly believed I may never see him again, and I could barely get my arms around him to hug tight enough, then I sobbed like a baby. 

can't move...gotta layand cry and pray

There were moments during that year I can’t remember, mainly during the first three months…its pretty foggy.  But thru it all I can vividly remember the pain…horrendous pain.  I mean I was eviscerated, literally.  My insides were on the outside.  When they would change dressings I would be screaming in my head, if not outloud (but there was plenty of that as well).  The couple of times they pulled my vent tube out were extremely traumatic, suctioning was a nightmare…as they disconnect you from the vent and you literally cannot breathe while they suction the mucus from your respiratory tract…I remember laying there, looking up at the respiratory therapist while he watched the tv on the wall while suctioning me.  I was terrified and he wasn’t even looking at me, I wasn’t a human.  During much of this time I felt non-human.  There were periods where my hands were tied to the bed, for my own protection to keep me from pulling lines or tubes out, I can’t tell you how awful that sensation was.  I felt like I was going insane, and in fact at one point they diagnosed me with drug induced psychosis and depression…well, duh!

In November 2006 the general surgeon was able to finally close my abdomen up, they also inserted a mesh to try to fix the abdominal wall because all my muscle tissue was gone from the flesh eating disease and all the surgeries, this mesh has since then failed and I believe contributes to the pain. I can’t tell you how thrilled I was to finally be closed up.  I had scars like a map, no belly button and still had pain…but it was closed and my bowel was reconnected!  I could eat!  The pain gradually got worse and worse but I wanted to stay as far away from the medical field as I could, so I just took over the counter meds by the handful and limited my activity.  Then in July of 2007 we were rear-ended in a car accident.  I got whiplash (my neck was unstable from having neck surgery in 1999 and degenerative disk disease), I went thru a couple months of therapy for that, then was sent to a pain center where they started me on pain medications.  I never heard of Pain Centers before, so was thrilled there was a place that gave medications for people in pain…not just injections which I had received in my neck years ago without relief. Meanwhile my abdominal pain continued to worsen.  I saw my family doctor who said I would always have pain but did a CT scan, which just showed a large ventral hernia from breastbone to pubic bone.  I went to the Cleveland Clinic and that surgeon said it was a shame, but that no doctor would touch me with a ten feet pole with the condition my insides were in.  My abdomen is full of adhesions/scar tissue, all the organs are basically glued together.  I’m not a candidate for surgery because the surgery would be too dangerous, probable perforations and possible death.  That the only way a doc would go in was for life or death, as in the event of an obstruction or death of bowel or strangulation of bowel.  So these doctors said all we could do is manage the pain and change my diet.

So at the end of that Summer, while at the pain clinic being checked for my neck meds, I asked those docs if they thought they could do anything about my abdominal pain.  After their exam they said the pain was caused from many factors, the huge hernia, the adhesions, neuromas (little tumors on the ends of the nerves after being cut and resewn so many times) and just the movement of the intestines as they digest food (since they are glued to the abdominal wall and other organs)…it is a horrid pain, I can only describe as a burning, tearing, ripping and stabbing pain.  It’s worse with any increased abdominal pressure, such as laughing, crying, sneezing, couging, blowing my nose or lifting or pulling, also with prolonged standing or sitting or walking.  At any rate, these wonderful doctors put me on strong enough pain meds that it takes the pain from about an 8 to a 6…which means I live in constant severe pain…but it’s duller than when I don’t have the meds, and I’ll take it!

me waiting for the meds to kick in and help dull the fire!

I have to watch what I eat, as anything gas producing kills me, I can’t eat lobster, shrimp, redmeat, raw veggies/fruits or anything high fiber.  I spend most of my time in bed, on the computer, watching tv or reading.  I work very little and its a sitdown job.  I can’t do alot of things I used to do, like ride a bike, dance, hike or walk for long.  My hernia makes my belly look about 7 months pregnant. I must wear an abdominal binder 24/7, and they are uncomfortable and hot.  I can’t pull laundry out of the washer.  I can’t run the vacuum.  I can’t do alot of things.  My husband and daughter must handle alot of the housework, and care of our three not quite trained dogs. (But I must say, my life wouldn’t be the same without these dogs, they are with me on my bed most of the time and provide me with companionship and affection when no one else can.)

So, all that sounds like enough tragedy…does  it not?  Well let me add a bit more.  Now, I know alot of people do not believe in law suits.  I never liked them either, until this happened.  Now we have no money, so my husband went to a firm when I was still very ill, and for whatever reason they turned down the case and somehow my husband ended up with an attorney who did take it.  It was filed within the 2 year time limit for medical malpractice cases. Then due to the many hoops one must jump thru in the state of Indiana to get a case like this to court it took until September 27, 2010 for it to go to trial.  A jury trial, with seven jurors.  Now, we don’t have money for a good attorney…do you think the doctor had money for a good attorney?  HELL YES.  His attorney had around 10 partners and many assistants.  They had all this high tech stuff that looked impressive!  Had 4 doctors testify on his behalf.  Criticized our expert witness.  Tried to make me sound like a drug seeking liar.  Had the nerve to blame my fibromyalgia, claiming I had been on narcotics for that since 1997…which I was most certainly NOT.  My lawyer was outgunned in my opinion.  I don’t place blame on him, I mean he tried, but it was clear by day two that we were not making our case clear enough…my lawyer only called me, my husband and our expert witness to testify.  That surgeon who spent so many surgeries fixing the damage?  Yea, she refused to testify on my behalf, saying it was a mistake (she in fact herself has been sued more than 5 times I now find out).  A mistake….yes, the whole trial his “people” kept calling this a mistake, a mal occurance, a recognized danger of the surgery.  They kept yelling that I signed the consent KNOWING a perforation of an organ was a possible mal occurance of this surgery!  I agree.  I knew it could happen…but I also was told that should anything go wrong…someone would FIX IT!!!!

The wise jury of seven, took less than 45 minutes to find him NOT GUILTY of malpractice.  When the verdict was read, that butcher doctor and his slimy lawyer smiled, laughed and patted each other on the back, then celebrated with the rest of their deceitful cronies, while we left the courtroom.  Stunned.  What the hell just happened?  How?  I cannot tell you the feeling.  It was much like the rape victim being victimized allover again on the stand.  That’s what they did to me.  They used my past medical history to make this surgical “mistake” look like either my fault or not that big of a deal. At one point during the Butchers testimony he said he prays for me every night and that he was so happy when he saw me because I LOOK so good!  Anyone who knows me, knows I am one tough cookie.  I also have pride.  I also try to look my best whenver I can.  So, yes…I had combed my hair and put on mascara and a pants-suit and was standing erect.  I had taken my pain meds so I could bear to sit thru this trial.  Was I sposed to look my worst?  Not comb my hair?  I have a wheelchair, I could have used…but I don’t do that.  I don’t show my agony to the whole world!!!  Only my loved ones really know the extent of my pain.  They see me crying almost daily, in the fetal position in bed.  They see my limitations.  I don’t want the worlds pity!  I don’t want that bastards prayers!  I WANT JUSTICE!  He should fess up to what he did!  Yes, the lawsuit was for money, as distasteful as that is! But I will have medical bills for the rest of my life due to this one event!  FOREVER!  I suffer every minute of everyday.  I was owed restitution.  Instead I got butchered, yet again.

My lawyer said we can’t appeal…and I figured, fine.  But when I started looking stuff up, that doesn’t seem to be the case….but I’m still looking into that.  If I can’t appeal, I have other things in mind.  It won’t get me monetary restitution from him, but it may get me just a minutia of justice, even just mental.  I need to make sure anybody who is thinking of going under the knife realizes the danger they are in, not to blindly trust their doctor.  Really be careful about who you choose as your physician.  Study about your illness or upcoming surgeries.  Dont’ just go to Healthgrades.com and accept their rating of the doctor, because if they have settled cases out of court it wont’ be there, neither with most malpractice cases or info.  I will try to educate people about that, and also try to change some of Indianas laws regarding malpractice, because quite frankly, they are bullshit.

So, here I am again, another Friday night in bed with the dogs, watching reruns.  But I’m not dead yet.  I have a fire in my gut of another kind.  This isn’t over…like I told my friend Julz…”It aint over til the fat lady sings, and I haven’t even cleared my throat!”

song requests?

Thank you for reading such a long post, I left some stuff out for lengths sake. Let me make it clear…I didn’t present every iota of this case nor was this doc found GUILTY of negligence. 😉

this blog is the property of tammy spice and tammy spice only

I will prevail.  I will.  Wait for it.  You will know it when it happens.