Insult to Injury

 

 

“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

 

 

 

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

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!