Tag Archive | surgery

Why not just move on?

I have heard people speak those words regarding people who have had something devastating occur in their lives, wondering why those people seem to linger in their misery long after the initial event has passed.  Sometimes it seems people just can’t seem to get past a particularly bad event in their lives. Maybe they stay in grief mode years after a death of a loved one. Maybe they have post traumatic stress for months or years after being mugged. And those around them, whether its people who love them or people who just like to pass judgment on others, can’t help but wonder why the person just can’t seem to pick up life where they left off? Just brush it off and MOVE ON already!

Well, as someone who suffers daily with chronic pain and anxiety related to a botched surgery that occurred in November 2005, let me just say that it’s not as simple as one may think.  I truly wish it was. But when every single waking moment is filled with pain from that incident, it’s really hard to just “get past it.” And the anxiety that I suffer with is also hard to just blow off…I suffer with anxiety and worry daily, regarding my declining health, my pain, my bleak future, not being able to do things I would like to do, not being able to make money to contribute to our family, incurring medical bills that keep us in debt, fear of future medical issues, feeling like a burden, and fear of the medical profession as a whole.  It’s hard to put trust back into the very group of people that caused your situation. It wasn’t just the surgical mistake the doctor made, it was me laying in ICU for days with infection burning thru my body, eating my insides like acid…with both nurses and doctors not picking up on it. It was that next year where 200 days of it were spent in hospitals, enduring 15 further “repair” surgeries, open wounds, flesh eating virus, pneumonia, blood clots,  wound vacs, poorly fitted ostomies, skin infections, central line infections, blood infections…caused by poor medical care in some instances. Nurses who didn’t wash their hands properly for instance. There was one instance I can prove this, I was of course very ill, laying in a hospital bed, a CNA was caring for me, cleaning me up for the day, and during the bedbath she had to wash around my central line in my chest, so she would touch it and move it aside during the bath. She was young and very sweet and I liked her, she was one of the few who actually talked to me and treated as a human being in the bed rather than some practice dummy. She and I were conversing, mostly her since I wasn’t feeling real chatty, but she used some little hand sanitizer she pulled from her pocket before she left and I said it smelled good, she said she got it at Bath and Bodyworks and she had many, so she handed the little container of sanitizer to me saying I could keep it. I said thank you of course, and she sat it on the bedside table and left. The lighting in the room was dim, but later I turned on the over-bed light and picked up the sanitizer…it was then I noted the little bottle was smeared with fecal matter. Yes…POOP. So, obviously at some point the girl got poo on it but didn’t realize it and was then squeezing it onto her hands to “sanitize” her hands, but was really contaminating her hands in the process…

So, that long story was really just to show that when we are helpless in a hospital or nursing home setting, we are depending upon the medical professionals caring for us to follow Universal Precautions to help keep the rate of infection down. But sometimes they do not. Sometimes they don’t wash their hands, or don’t do it properly. Sometimes they think, “I was wearing gloves when I cleaned up that poop, I don’t have to wash too” and move on to the next person.  But maybe the glove had a tear or small hole. Maybe some of the matter got on her wrist or her shirt or her stethoscope (another potential portal of infection), they maybe washing a dirty area then wash a clean area, or touch your IV caps or your foley cath tubing when emptying your bag…there are so many ways for infection to spread. They don’t mean to. They are just trying to do their jobs…which are extremely stressful, with the corporation rules, the constant short-staffing and heavy patient loads, the management breathing down their necks to keep costs down but do more work…it’s no wonder there are so many staph infections and MRSA infections, among others that get spread throughout healthcare settings on a daily basis.

But, this entry really wasn’t supposed to be about infection control…so I apologize for the tangent. My point with that was that I ended up with so many hospital acquired infections during that horrid year, and witnessed so many medical mistakes…wrong meds they attempted to give me, watched them perform treatments or instill meds in ways that were not following proper protocol, leaving me to lay in a dirty bed for far too long, or just being unprofessional or even, I am sad to say, downright cruel in some instances…I had one aid strip me down and park me in a shower chair, tossed a rag in my lap and left me there under the cold running shower, while she went to do something else. At the time I couldn’t stand or walk, I had lines coming from everywhere, my intestines were open with my belly having a softball sized wound, covered in saran wrap and hooked to a wound vac…a foley cath to collect my urine, and was so weak, ill and drugged I could really barely speak or move. I sat there with my teeth chattering, naked and vulnerable, freezing water spraying on me, no call light in reach and unable to call out for help. Another aid came in and half way dried me off, threw me in a gown and rolled me back to bed.

Nurses who yelled at me for wetting the bed, or soaking it with perspiration during high fevers or the hot-flashes after the ovary removal. A doctor who was abrasive saying “This is the hand you were dealt, you gotta decide how to play it” when I was fighting for my life…and just trying to live from one minute to the next.

So, yea…I have anxiety issues when it comes to the medical profession. I must go to the doctor every month, the Coumadin nurses every month…and I live in fear of my intestines becoming blocked or twisted by adhesions and ending up back in the hospital, facing another surgery in a life or death situation. Or having to go due to bloodclots or heart problems. 

Every single day since that botched surgery has been filled with pain and anxiety. They can’t fix the physical or mental damage that was done. They can throw meds at the problems, but they can’t fix them. They believe and understand the physical pain I am in, like they said, “You can’t be cut and sewn and cut and sewn on one area of your body as many times as you have been and not have long-term consequences, the adhesions have become rubber band tourniquets around your bowels Tammy, you can no longer digest food properly and the nerve bundles have been sewn up into the tissue adding to the pain cycle, the ventral hernia which we cannot fix will continue to burn and cause pain, we are sorry that all we can try is to keep you comfortable and keep your nutrition supplemented” oh and there’s always the “We are so sorry you have had to live thru this unattended mishap.”

I wake up and the pain is there, I can’t sit up from a lying position without first rolling onto my side. I walk hunched over much of the time because standing strait sometimes makes the pain worse. I cannot cough, sneeze, laugh, yell or blow my nose without bending over and splinting my belly and God help me if a sneeze catches me off guard! Of course running or most exercise is out of the question. I can walk, but not for long, extended periods. I can dance, (badly)…but carefully and not for long, I can’t lift more than 10 lbs, can’t pull wet towels out of the washer, I can’t eat red meat, raw veggies or fruits, fiber, nuts or seeds or dairy, I can’t do much of what a normal healthy person can do…somedays I can’t leave my bed or couch due to the pain in my abdomen. When I do leave my house, I put on my “normal face”…I walk straight even if it hurts, I smile at people and chat with people, I get my groceries and put them in my car…I’m so good at my act people have no clue how I’m really feeling…but what they don’t see is me getting into my car and driving away sobbing…but  CAREFULLY sobbing, because I don’t want to cause more pain…getting home and waiting for the garage door to shut so I can walk all hunched over, crying, holding my belly, carrying in the groceries and putting them away…then laying in the fetal position, as still as I can, while waiting and praying the pain med will atleast take the edge off so I can take a breath without feeling like a knife has been plunged deep into my gut.

My life was completely altered by that botched surgery and the events caused by it. I usually say that I died that day in the operating room…because a part of me truly did. I’m not the same person anymore and never will be whole again. I feel I would’ve been better off for them to have cut off my leg, because atleast that would heal…my insides can’t heal and they can’t just be removed. The pain and scarring from that ordeal is permanent. The change in my psyche is permanent.

Sometimes things happen to us in life, where it’s just not so easy to move on and forget it. When the memory of it hits you in the face everytime you move or cough or take a deep breath…how do you just “get over it already?”

Just as when a loved one dies…who’s to say how long you should grieve? You will never just get over losing that person…your heart will always feel heavy at the thought of them being gone. Or your house burns down, taking everything you own…yes, you can get new stuff and a new house…but its still a trauma that you will carry with you, even if just the fear of fire.

I do what I can to lead a normal life. But it truly is controlled by my pain on most days, even if I can walk and smile my way thru the store or at church…its an act…its not me…because ME is balled up in pain, sobbing and begging God to get me thru the next sixty seconds.

I would honestly give an arm or a leg, if it meant the pain would be gone or even lessened by 50%…maybe then I could “move on” but really I don’t think one ever truly just moves on after a traumatic event in their lives, they just learn to shove it down and hide it from the world, because it’s just not tolerated otherwise.

 

What kind of hand were you dealt? If you have had a strait flush your whole life…be very grateful…and if your holding jokers like me most of the time…I feel your pain!

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I believe

Alas, another night filled with indescribable belly pain. Knock you to your knees and beg to pass out kind of pain. Pain pills barely taking the edge off, I can’t imagine what it feels like without them….I don’t have any recourse left…no doctors that I have found to date will operate until I am literally taking my last breaths due to obstruction or peritonitis. Part of the bowel is dead. I cannot eat anything other than crackers, tea, gatorade, silk vanilla milk, some babyfood and occassional toast.

I can’t keep the bowels working normally. I take stool softners three times per day. I take probiotics and digestive enzymes. I live on Gas X and Mylanta. I take Mirilax daily. Then about once or twice per month i drink a bottle of Mag Citrate…with all of this…I am lucky to have a BM once per month…and its not anything close to resembling a normal BM.

So, what to do what to do, eh? I have sent my records to doctors in NY, NJ, FL, CA, OH…and spoke with one in Germany who has helped alot of people when other docs couldn’t…none of them feel its in my best interest (or theirs) to even attempt any surgical intervention, unless I’m already dieing. Which, make no mistake, I AM indeed dieing from this…its a slow agonizing death…but coming all the same.

Oddly enough I am at this point in my head though, where if I found a doc tomorrow who said “Hell yes I can fix you!!! No problem! Lets get you scheduled asap and get you out of your misery young lady!” There is no way in hell I would believe or trust in this doctor…so, what’s the point in looking? I’m not even sure anymore. I mean, living in this agony is no walk in the park by a long shot…but atleast I’m here…breathing…watching my kids lives…a part of it all…I can accept this, I can live this way…I’m tough as nails and stubborn as a mule, but its the fear that each increase in pain, or each day without a BM or the lack of nutrition is getting me closer and closer to death. The fear is killing me.

I have met so many strong and inspirational women online. They have become my sisters in illness. I hate that there are others who are suffering like I am out there, yet I’m so thankful to have found them or to have been found by them. I feel not as alone in this fight.

I don’t know if I’m useful to anyone anymore. Somedays I’m pretty certain I am not. Somedays it feels that no matter how much I try or how much effort I put into doing what I can for others, it’s not enough…or infact is detrimental in some way.

I want to keep living. I can’t accept that this is all my life was to amount to. I’ve been fighting for life since I was a young child…right up to this very day. I’m a good person. I am a giving, caring, empathetic and nurturing person. I want to help others, to give whatever I can to people in need. My husband said the other day that if I won the lottery of billions, I would die poor because I would give it all away, and this is true!

But how can I help anyone from a bed while in the fetal position clutching a heating pad in tears? This can’t be my “purpose” can it? I keep thinking I will figure it out. I will find a way of being useful, a way to help those who would appreciate it and not take it for granted. But each day I wake up and either the pain is too great to move or I am recoving from the day before that was.

Our finances are in ruin due to medical bills. With more to come. It’s just added stress that also wreaks havok on my already totally wrecked body and precarious emotional state.

But I’m not throwing in the towel. Not yet. But I’m kinda throwin in a cotton ball…askin for a truce for a bit so I can catch my damn breath here…and plan the next fighting sequence.

As always, I believe in the power of prayer, so I will take all I can get…

 

believe

I believe in positive thinking and gratitude…and I’m doing that daily, with a few falters here and there.

I believe in laughing, loving, living, learning and listening.

I believe.

T

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

The Little Girl…part 8

After finally getting another nurse to take her concerns seriously, an MRI was done and it was found that she had a pulmonary embolism.  A blood-clot in her lung, a potentially fatal condition!  They were able to dissolve the clot with Heparin and Lovenox.  She has a bloodclotting disorder called Antiphospholipid Syndrome and will forever need to take a blood thinner and make monthly trips to a Coumadin Outpatient Clinic.  She is giving up hope of ever getting better.  Of ever going back to her old life.  Depression sits heavy on her mind.  She thinks of suicide often, even plans it.  She frequently asks to speak to the hospital clergy, and prays with them…hoping somehow their “holyness” will rub off on her! 

Finally after missing family birthdays, and many holidays…she is sent home.  A home nursing service will follow her.  Her abdomen will remain open until it is safe for them to attempt to reconnect her intestine and allow her to eat.  At home she is only able to lay in the recliner, she cannot lay in bed because she is unable to get back up.  She has a wound vac attached to her abdomen, that suctions secretions out, she has the central line still providing her nutrition, a bag is hung each night for this purpose.  Her husband and grandfather have learned how to care for all her tubing and feedings and machines…a big job for two “regular guys.”  There are many trips to the hospital due to infections, electrolyte imbalances, ostomy leaks and tests.  But she is thankful to be home.  Although she is basically a “lump in a chair” atleast she is surrounded by her family.  She begins to slowly recover and to see a light at the end of the tunnel.

She is finally ready to try to have the final surgery to reconnect her intestines and close up her abdomen.  She is extremely nervous about more complications but is also very hopeful that the end of this nightmare is near.  She comes through the surgery very well…no complications this time!  The staples run from her breastbone to her pubic bone.  The criss-crossing scars allover her belly look like a child’s scribbled map…but she is just happy her “insides” are again ON the inside where they belong!  The recovery process is slow and scary.  The constant fear that she would develop a fistula (hole) in her bowel or an infection or a blockage is at the forefront of her mind.  She will forever live with pain due to adhesions, scar tissue, neuralgia, neuromas, and bowel issues…there is a very high risk for obstructions and she must really be careful about what she eats…no raw veggies or fruits, no red meats, no nuts or seeds, no beans…nothing high in fiber.  But she is free of tubes!  Her body is hers again!

Days turn into weeks, weeks into months, months into years.  Her children grow up.  She becomes a grandmother at 45!  She is so thrilled with her grandson!  During his infancy she cradles him lovingly every chance she gets!  Although she tires easily and has constant pain, she revels in these moments with her first grandbaby!  Her marriage has developed into a very close if passionless partnership.  Due to the pain, intimacy is all but non-existant.  She is unable to hold a “real job” due to her health issues.  They lost their home due to their mounting medical bills.  They now lived in a cheap rental, but she did her best to make it their home.  It was just the two of them now.  They had what they would consider a decent life now, always thankful to be alive and to be here for her children and now grandchild.  They found a wonderful church to worship at.  Although she had gone through a period of anger at God for what had happened to her, she always kept her faith, and her relationship with God open. 

She wanted to find a “meaning” to all she had been through in her life.  Why had her life been such a struggle?  Was she a bad person?  A bad little girl?  A bad daughter?  A bad mom?  She imagined she must have been some horrible person in a past life to deserve such misery!  Lizzy Borden perhaps?  She felt there must be a reason God had set her on such a tumultuous path in life.  There must be some meaning she was to find.  She is compelled to discover it.  She wonders if she can use what she’s been through to help others?  But how?  She knows one thing for sure…she did not live through all she’s lived through, for nothing!

To be continued

“Unhappiness ultimately arises not from the circumstances of your life, but from the conditioning of your mind”  Tolle

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

Hello world!

So…gonna try this blogging thing once again!  I had one a couple of years ago…but didn’t follow through.  I love writing.  Always have.  I feel that writing is therapeutic, getting out all your thoughts…frees up your mind.  This blog will be a journal of sorts for me.  I will talk about my life…they say every person has a story, some more interesting than others.  I of course feel mine is interesting…I have lived through alot, starting of course the day I was born into a very dysfunctional family on Friday October 13th, 1967.

My mom and dad were 19 & 20 when I was born.  Not really ready for children…but they tried.  Unfortunately my dad was a drinker and immature, not ready for the responsibilities of a family.  My childhood was wrought with chaos, alot of screaming, fighting, abuse…one of my first memories was me running down our driveway, in my brand new white pajamas, in the rain going to get help because my dad had my mom bent over the counter with a knife to her throat, I was going for help and fell in the mud.  I got to the neighbors house and he went to my house and told my dad to stop and tried to talk him down, but my dad threatened him and he left.  That was when I decided I had to protect myself because no one else could.

Growing up was filled with alot of that sort of drama.  Being drug out in the middle of the night in my pj’s to drive around to every strip club/bar in town to find my dad.  Fights.  Me and my brother hiding under beds while the adults fought.  Being verbally and physically abused.  I quickly became the “pleaser” of the family.  Do everything you’re told and do it well.  I excelled in school.  I loved the outdoors, the woods, the park, the cemetary…I lost myself in books!  Reading was an escape for me, I could “go to another world” where it was nice and fun and exciting!

My teen years were a bit better, although my parents were both drinking at this point, I had learned to block all that out and to mostly take care of myself.  My grandparents were very good to me growing up, and I got to stay there on weekends alot.  They spoiled me in a sense…I felt so safe there.  My grandmother is my hero.  She just turned 90!  She is and always was a very strong and independant woman.  She raised 4 kids all on her own, while working in a factory.  She herself had a very hard childhood and that is where she got her strength and character, as I did.

I always felt growing up like I wasn’t “good enough”…like every other girl/woman I saw was somehow “better” than me.  Better looking, smarter, nicer, funnier, cleaner, classier, better dressed, just better.  These insecurities led me to some bad relationships, that in retrospect were similar to my parents…controlling and abusive.

However, I did manage to put that behind me.  Got married to a good man.  Had two wonderful children, although they are six years apart due to my having a few miscarriages in between them, which was tortuous to go through at the time.  But my children are and always have been my number one priority in life.  I never wanted them to have to go through the things I did as a child.  I wanted them to feel safe and loved…and they did.  Not that I was a perfect parent, we all make mistakes.  I have forgiven my parents for my childhood, they did the best they could with what they had, they were young, uneducated and struggling financially for alot of years.

I became a nurse, and loved taking care of others…I did that for about 10 years, then stayed home with my children.  I have always considered myself a strong woman, but I never knew how strong I would have to be until a tragic event that occurred on November 3, 2005.

I was having “female troubles” for many years.  Before this time I had been diagnosed with Fibromyalgia and Degenerative Disk Disease, but other than that, fairly healthy.  The physician that was treating me for my “female issues” found cysts on my ovary and after some discussion we decided to have them removed.  It was supposed to be a strait forward procedure using a laproscope, which is supposed to be safer with an easier recovery.  Of course every surgery has risks…oh boy do they.

That day in November, I was in pre op on the gurney, with my husband at my side.  The doctor came in, we held hands and said a prayer.  I was wheeled into the operating room.  I remember very little until around April…other than periods of agonizing pain in my abdomen, screaming out in pain, trying to climb out of the bed, tubes being inserted in my nose and down my throat, lots of needle sticks, horrific hallucinations due to the drugs…I mean nightmarish delusions that seemed so real, I was traumatized by these illusions and can still vividly remember them today.  That’s what I remember.  Now what my family and medical records reveal is this:

During the procedure the doctor punctured through my intestine with an instrument called a trocar.  It went thru one side and out the other.  Now a hole of this size should have been recognized, but for some reason, it was not.  The doctor could not do the operation laproscopically as planned and had to open me up to do it…he did, then sewed me up and he left for Disneyland.  I left for the ICU due to peritonitis and ended up on a ventilator and IV’s and Central Lines in my chest.  I was in a drug induced coma.  My family was told to make arrangments for my death.  My insides were basically eaten up with infection.  The next surgeon who went in there said my intestines were like wet tissue paper in her hands.  She could not repair the damage.  Over the next year I endured around 15 abdominal operations, some small, some major.  Some of my bowel was removed.  I had ostomies…that leaked constantly and caused skin damage.  I had a wound vac attached to my abdomen.  I was fed thru a catheter in a vein in my chest.  I spent a year in and out of the hospital…mostly in.  I missed family birthdays, holidays.  My children were11 and 16 at the time.  They were traumatized to say the least.  My husband was so scared and stressed.  He spent every moment he could with me at the hospital, but he still had to work and be at home.  My family would stay with the kids and help keep the house going.  My poor grandmother who was in her 80’s was worried sick and at my home cleaning and cooking and caring for the kids.  It was a horrible time for all of us.  Today I am alive thankfully, but somedays I feel like it may have been better if I had died.  I live in constant pain.  My abdomen hurts constantly due to neuromas, adhesions and a ventral hernia.  I have no muscle wall over my abdomen, my intestines/organs lay right under the skin.  I wear a binder 24/7 except when showering.  Coughing, sneezing, laughing and blowing my nose cause major pain.  I can’t eat alot of foods, no raw vegetables, no brocolli, no beans, no red meat, no nuts…nothing that can cause gas or that is hard to digest.  I must go to a pain doctor every month and must take strong narcotic pain killers to help dull the pain that I am in.  I spend alot of time in bed on days that I just hurt too much to do anything, even with meds.

There was a time when I thought dieing would be easier.  But I now feel that God spared me for a reason.  I am not entirely sure what that reason is yet.  Possibly to help others in some way.  Whatever the reason, I know this…I have survived alot of adversity in my life.  Sometimes I ask “why me?.”  I have pity parties somedays…but mostly I just plug along in life like everyone else.  I put on a brave face everyday..atleast to the outside world, my immediate family knows my pain.  Unfortunately they are affected by my disabilities as well.  They see me doubled over crying like a baby.  They feel helpless because there is nothing they or anyone can do.  But to everyone else, I look “normal” I don’t show my pain to everyone.  I don’t want pity. I don’t want any attention drawn to me.  Therefore I walk strait and tall…even when my abdomen screams in pain.  I focus on what needs to be done and I do it.  I am living life. 

One thing I can say I have learned from this is:  Just because someone looks healthy…doesn’t mean that they are.  So next time you see someone parked in the handicapped spot get out and walk jovially into the store, don’t assume they are fakers.  They may be hiding their pain/disability due to pride.  When that waitress seems a bit short in her responses, maybe she has a chronic pain condition or illness.  I just want to make the most out of my life that I can.  I want to do what it is I am here to do.  I read inspirational and self help books voraciously! 

I am back in the healthcare environment and loving it…I am hoping it will be a permanent career for me!  On top of the above mentioned ailments, I also have a bloodclotting disorder and must take blood thinners for that, and recently have developed tendinitis in my elbow and a torn ligament in my knee…lol, so……lets just say my medical bills are phenomenol!!!  We will never be out of debt!  We had to sell our home last year and now live in a rental.  The medical bills just keep coming!  While the money only trickles in…ahhh, such is life.

Anyway, so that is my first blog!  Don’t worry…they won’t all be this “me, me, me”…I am capable of writing about stuff other than me and my health problems…I think…?  No really.  I love humor and intend on showing that off a bit here…although it tends to lean toward the sarcastic side at times.

This was just an “insight” into what has made me…ME.  Background if you will.  It felt good to type this all out.  I know it’s long!  I promise they won’t all be novels.  Like my friend TJ says, blogging is cheaper than therapy!  And God knows, I can’t afford therapy!