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!

cards2

16 thoughts on “Why not just move on?

  1. OH MY GOD. OF COURSE I BELIEVE YOU BUT CAN’T EVEN FATHOM THE POOP INCIDENT WITH THE HAND SANITIZER. if you ever have to go to the hospital again, is there another one, a better one you can go to? I have never heard such abuse in my life. As well as I know you, I NEVER heard that story and I am beyond belief. I’m also in shock. Did you put THAT in the lawsuit? I have an idea that I want to talk to you about, but not here so if you see me online, ping me and vice versa. I’m devestated FOR YOU. Love, Peanut

    • oh yes…its all 100% true…swear on the life of all I luv. that wasn’t all just at one hospital…it was a mix of the 3 in my area…it happens at every healthcare place…if ur there long enuf and know enuf u will experience it…I know wich hospital here I will go to for sure…none are 100% great or safe, but the one to go to is the lesser of all evils I guess…I just chkd fb and u weren’t on…will chk later…thx for readin peanut! :)

  2. You have had more than your share of horrific, painful, events. I too have had a hand full of jokers throughout my life. From being born with asthma, having an allergic reaction to the first baby food my mother fed me, having a bone tumor removed from my arm and replaced with part of my hip at 15….on to adulthood. The many chronic illnesses I have now. Losing my hearing, losing my balance, having chronic migraines, daily headaches, vertigo….ect….
    I know we can’t just move on, and go back to where we were. I did have a somewhat healthy life for a while there….well, what I would consider healthy, but really there has always been something.

    So, I can’t drive, bend over and pick something up, do house work, exercise, bathe alone….ect.
    And I have a huge fear of bathing or showering as they escalate my condition. But I have to.
    I also have fear of abandonment, since so many people have abandoned me through all of this.

    I do have a great therapist I’ve been seeing for almost 3 years now, and my husband comes with me, it has made our change in roles much easier, and has relieved a lot of my guilt of not being able to contribute, or being a burden. So much guilt, that has been wasted. We should not feel guilty over something we had no control over! Our loved ones love us, and they’d much rather have us like this than to not have us at all.

    No, I can’t get over it, and just move on….but I can chose to focus on what I’m grateful for, and what I can do now. (like you writing this post and letting others know they are not alone) I do try to stay positive, sometimes I fail, but I try. I try to laugh a little every day….(I know this is even painful for you, it is painful for me sometimes, but I feel if I can laugh…especially at myself, then I can think a little more positive. I’ve started crocheting, and trying to teach myself how to knit, so I can do something even on days when I’m in bed….and that’s a lot. I make squares for blankets for the needy. There are a few charities that do this, and I can simply make a square the size they want and they piece them together. It makes me feel like I’m contributing something to society. Even though I haven’t gotten much done yet. I do try hard to focus on what I can do, and what I can still do, even if I have to do it differently or have help now.

    You amaze me that you can put on that face and go out. I can’t do that any more. If I go out, I am happy so I have that face, but if I start to hurt or get dizzy, it shows and I’m asking to go home, or I’ll sit in the car until hubby is finished.

    sorry I’ve written a book,
    I think of what has happened to you often and how no one is safe, even in a place where they think they can trust the people caring for them.
    Healing thoughts are sent your way often.
    wendy

    • thanks for reading and commenting Wendy…I know u totally get my intent of the message…only people who live like we do would I guess. I wish no one had to deal with so much misery daily…but there are many of us out here…unfortunately. Everyone has sum cross to bear…so I am always thanking God for what I have and what I am able to do. Today was a real bad day…a not move from the couch day…a breathe as slow and careful as I can day…pain meds can be such a joke…I’ve stopped taking most of them at this point…so the pain is worse…but its just such a vicious cycle when you must take long term pain meds…it scares me that if I ever had to have surgery they couldn’t control the pain at all…so we weaned off most of it…but still take gabapentin and stronger for the worst days…it does help me to atleast be able to do some things … eating really makes things go down a scary and dreadful road…I have lost so much weight…luckily had a lot to lose…but doc don’t want me losing more…or I hafta go bak on TPN feeding thru my chest… don’t wanna…risk of blood infections again….dunno if I could live thru that again…did it too many times already. It must be so awful to be dizzy all the time…I love that you crocety blankets for charity…I’ve tried to learn crocheting…staring at the magazine/hooks and yarn right now…all I could do is one long rope…cant seem to understand getting to the next row or other stitches…I get frustrated easily if I cant master something quickly and give up…lol. but I’m gna try again sometime soon. Never thought about doing blankets for charity type things…great idea and a motivator for me…I so have a need to be useful…my kids are grown…no one really needs me anymore…so it feels worse now then when they needed my care…atleast I felt like I contributed something … I feel more and more useless everyday…I wish I could make an income…we are living check to check and not really that…debt up to our eyeballs and me adding more bills every month. People think…well “well she goes to church or she goes shopping or she goes to get togethers with friends, she seems fine to me…why don’t she work?” lol…if they only knew the extent of my illnesses…my poor hubby and immediate family get it…they see the pain daily…but anyways…I’m sorry we belong to the same joker club but I am happy to have you as my virtual friend who gets it. You take care Wendy…and keep laughing!
      T

      • Maybe you should let some of those people see the real you sometimes. It has to be hard to put on the mask for them. I admire that you can do it. I can’t. But I really don’t see many people any more since I lost my hearing. If I try to go to a function I’m just left out and feel like the dunce stuck in a corner. Even with my cochlear implant I can’t hear enough to deal with crowds. I get overwhelmed and soon have a sound headache. so people think I’m ignoring them anyway.
        Plus, you can’t really hide when you have severe disequilibrium. I now use a walker, at least people don’t think I’m drunk all the time. : )

        About teaching yourself to crochet or knit…I was having a really hard time with the books, then my therapist (of all people) mentioned that the books to teach children these things are much more understandable. And she is sooooo right! I got some children’s hot to knit books from the library, and it was so much easier to understand, and the pictures were bigger. some books were better than others, but I think that’s often a person’s learning style. so if you want to break out that yarn and crochet hook, I suggest a kid’s how-to book. : )

        I’m so happy you have started posting more often. People need to hear about your story and how you deal with it all. You are so lucky to have a strong family. I have my hubby, and he’s wonderful!!!! I would be living on the streets or dead if not for him, but I have no other real support. Only lip service. “call me if you need anything” then if you do call, they can’t help at that time, but call if you need anything else. Oh sure, I’ll jump right up and do that. Do people have any idea how hard it is to ask for help in the first place?
        Oh I’m a bit off topic here aren’t I?

        thinking of you.
        wendy

      • Wendy, Thanks for reading and commenting! I’m so grateful for the friends I’ve made thru my blog and facebook…people who truly understand chronic pain and or illness and all the crap that goes along with it…although I hate that anyone is suffering daily like I do. I can’t imagine feeling “unbalanced” and unsteady all the time as you do, and all the other along with it…we all have our own crosses to bare is so true. Thanks for the idea for the crotchet and knitting…! That’s great advice! I will try that. Another friend on here suggested the videos on Youtube…didn’t even think about that either! I’m gonna learn, somehow, someway! lol…Its true, I should let more people truly SEE the agony I am in…I just have such a hard time with that…Not sure what it is…pride, admitting limitations, looking pathetic, or what…but even when Im in a store…and my gut is hurting so badly I want to lay down and curl up and cry right there on the spot…I just keep a poker face, keep making my way to the register, get out of there and then break down in the privacy of my car…for a long time I was letting my pain run my whole life…rarely leaving the house…but I’ve decided life is just too short, and whenever I can have the opportunity to get out of here for something…I’m gonna do it…take an extra pain pill…yes, but I’m not gonna spend whatever time I have left just laying on this couch…granted, there are many days I just really have no other option…the days where an extra pill and a poker face just wont come close to cutting it…those days the couch is my sanctuary…but I’m gonna be in pain no matter where my body is at the time…so I may as well be in pain with friends and family…or at Goodwill…lol. I’m just thankful I can move. I can get out of bed. I can see, hear, smell, breathe and feel..I can spend time with family and friends, maybe not as much time as I wish I could, but when I can it makes me happy inside, which in turn helps my health situation I think. With all the potentially fatal health issues I have, I really worry about how many years I will have to spend here on Earth…and I’m not a big adventurist, no huge desire to travel or run marathons…but going to movies, a special concert, garage sales/Goodwill, Walmart or floating at the lake are things I enjoy, and gets me around people I care about…so when I am able I just force my way thru it…I may spend a day or two recovering, but I always feel it was worth it. This past week, I tried to cram a few too many activities in…and today my body is really making that loud and clear…but it seems I can go months with no invites or opportunities to go anywhwere or do anything, then all the sudden they pour in on the same week! lol…I’m grateful for my husband, he makes it possible for me to be able to do more than I could alone, he is the most caring and supportive husband I’ve ever known…my grandparents and parents are also very helpful and supportive…I thank God for them everyday. Not everyone understands the pain I’m in or the other very serious illnesses I am dealing with…I look okay on the outside, so therefore I must be totally fine! But the ones who know my medical records and see me regularly know the real story…and in the long run, that’s all I care about. I think finding all my “cyber” friends really helped me in so many ways…I stopped feeling like such a freak, stopped feeling so alone in my pain…the support and encouragement I receive from all of you has kept me going over the past few years, it takes having someone really know and understand the trials we face on a daily basis to really make us feel understood and accepted…and validated as meaningful human beings. I pray for all my “sisters in illness” every night…we all have to keep inspiring each other to keep going.

  3. I’ve got all my wordpress blogs on weekly digest, so I only discovered this by co-incidence this morning — when ever I log into wordpress, I get this running/scrolling of blogs I follow that have been posted. Often, I just do a quick scroll, thinking I’ll get back to these blogs later. But, I know due to your health issues, you aren’t able to blog, so I knew this was an important piece of writing.
    The children you raised will always need you — even if it doesn’t seem like it now that they are grown. The twins will need your guidance and unconditional love (not that the parents wouldn’t take good care, but grandmother’s can impart knowledge and experience. Really wish there was some way you could go back in time (like I wish I could a lot), and stop what happened.
    Your experiences just show how bad the health care “profession” has come: health insurance dictating what meds and how many, a lack of hospital staff (due to earlier cut backs, and doctors/nurses who should have known their roles better. As I firmly believe what goes around, comes around and that some day they will need the same medical professionals they never were.
    I’ve been dealt jokers — some physical, some emotional, some mental heath. I won’t go into those, I have too many right now — enough for a series of blogs if I go back to my childhood and work up to today, lol,
    While I deal with daily pain, I don’t often (if ever) experience pain at the level you do. The trouble with an invisible illness, that unless you look “unwell,” people don’t understand that folks put on an “I’m okay face,” when they just want to go home and do what they can to function after grocery shopping, church attendance, etc. I am furious at my niece-in-law who recently graduated from med school. She thinks I and her father’s second wife “fake” the pain we say we have, and just use it as an excuse to get drugs, not participate in “family” activities — tho when my sis-in-law isn’t there, they trash talk about her in front of me, etc. My god, I thought by now, med. schools would force interns to recognize the existence of chronic pain, and that no “one size fits all approach works!”
    When my mother had trouble getting up off the toilet in the last days of Feb. 2010, we took her by ambulance to the local hospital (the same one that contributed to my father’s death, but my mother wouldn’t let me take this up with the medical board).
    I was told to leave the ER — forced out the door and waiting room — mom was only in for observation. At that point, even before meds, she was in very little pain. When I came back as early as they would let me the next day, I found my mother in excruciating pain, and no buzzer to contact the nurse’s station. I was furious! Then, they keep her in ER till a bed was available upstairs. (I had to call some I knew in the medical system for home care for folks like mom, who gave me the number (I wasn’t supposed to reveal the helpful community outreach worker’s name) of someone up the ladder — within 2 hours mom was upstairs in a ward — still not getting the proper medical treatment for pain.
    Her doctor didn’t know his ass from a whole in the ground, and has been “phoning in” to his practice for at least 5 years. He never referred mom to the kind of specialist he should, nor noticed her decline when she cover no longer put on her “I alright face. I had to fight him on that! Then, he never updated me on my mother’s condition in the hospital and the pain was getting worse. ER is no place to spend a week! Mom had fallen thru the medical cracks, and was not getting the meds she should. Some nurses were sympathetic, others “just suck it up.”
    I finally turned to a palliative care dr. to look at her files and her condition — and finally she was getting the kind of meds as frequently as she needed them! I had even said I would sign any waver if mom could get the pain meds she needed.
    The hospital was very unfriendly when it came to where we would put mom while waiting for a space in a 24 hr care facility (She wouldn’t allow that kind of assistance in her own home.) I got very frustrated — mom was shuffled around, and each move meant a new social worker.
    She followed the path of so many folks of her age — caught a lung infection and died within the week.
    Her experiences only mirror your’s slightly, but even something simple like a fall with no pain turned into 8 weeks of hell for her. If there had been a buzzer in her ER bed the first night, a nurse checking up on her while there to see the pain, or if they had let me stay, perhaps the pain syndrome could have been avoided. There was no point in suing (mom wouldn’t let me do it over the mishandling of my father’s condition in the same hospital) as there were too many individuals involved.
    There is no excuse for what happened to you — stupidity on the part of the medical system put you were you are. I understand the “guilt” of dealing with illnesses (mental and physical) that drain our resources (partly due to the high cost of health insurance) and my inability to find work. I can begin to understand how you feel in terms of contributions to the family. Just think of how your children and husband didn’t abandon you and how much they will love and need you.
    Sorry about the long response, as I said mom’s experience didn’t mirror yours, but I had more problems with the medical profession over her health than I should have. Sometimes these blatant mistakes make me want to go into politics so no-one has to go thru the daily pain you do because of mistakes made and not corrected.
    Thinking of you, gentle (((((hugs)))))

      • Just wanted to let you know that I finally got the “history” part up. I will work on the current problems later and as they arise, but I am definitely more inspired knowing that there are people like you also telling your story and that I am not alone in this.

  4. I’m so sorry you have to go through all that. I also have a novel of a history, which includes adhesions, several surgeries and hospital stays, staph, cellulitis, abcess, and several chronic illnesses to go along with it. I’ve had my adhesions removed twice and I’m sure I’m full of them, again, but not a surgeon in town that will touch me unless my organs become displaced, as before. I understand your pain. Just know you are not alone. I look forward to following you on your journey.
    Tammy aka Wild Thang :)

    • staying strong is our mantra, isn’t it? somedays its hard to be strong, as i’m sure u no. other days we have no other choice. thx for reading! xo
      T

  5. You’re absolutely right, my friend. The past few days have been impossible for me to be strong, but I just got done watching a beautiful video of a man with no arms or legs give a very inspirational speech to a bunch of high school kids. Another blogger friend sent it to me and it couldn’t have come at a better time. It was so inspiring and I hope to get it posted to my blog within the next few days. Take care. I hope you are feeling better today. When I get this posted, please take the 45 minutes to watch it, it is probably the most inspiring thing I’ve ever seen.
    Peace and hugs my friend,
    Wild Thang aka Tammy :)

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