Tag Archive | pain

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

Content…

contentment

Driving home from the latest medical appointment today, I was contemplating how the rest of my day would go…generally the very way it does most days. I will get home, and walk thru the door to the dogs all barking their heads off, I will let them outside as I trip over the three of them walking to the door. I will unload whatever items I may have from store, then head to jump into my pajamas.

I wash my face, then straigten up the house so I can relax. Let the dogs in, prepare their dinner and serve. Then decide if my body will tolerate something more substantial then Ensure, which it usually will not, so drink my dinner then hit the sofa and turn on the computer and tv. Yep, both will be on somedays…usually a news or documentary type program on television or Netflix and just email, facebook or blog stuff on the computer. I’m doing cancer research for a family member, as well as researching my own illnesses, so I’m on the computer alot.

The dogs and cat are usually on the sofa with me, keeping my legs warm! The fireplace is flickering and heating up the room…I’m trying to learn crochet, so I may have the yarn and hooks out with the magazine and maybe a YouTube tutorial. I will usually talk to my mom and grandmother by phone at some point.

If the pain is really bad I don’t do much of anything other than lay on couch and focus on breathing gently so I don’t aggravate the issue…usually try to keep from crying, as that just makes it that much worse. As the evening goes on I get myself a cup of chamomille tea…with too much sugar and maybe a couple of Saltines. Play with the animals and brush the dogs…

Then it’s time to pick Jess up from work and she tells me about her day at work on the ride home, then we get in and she gets comfy while I empty her lunchbox. Then she gets a snack and we sit on the couch and watch something we have on the DVR, like tonight it will be American Idol…then later after Jim gets home, he and I go to bed and watch Days of Our Lives…yes, we are both hooked on it, for about two-years now I think! I personally LOVE EJ and I think Jim has a crush on Nikki (so would I if I was a guy!) lol.

After the show is over, Jim goes to sleep and I read until I am able to pass out, usually around 3am or so. Then I’m usually the first one up anymore, didn’t used to be, but am lately…get the fireplace on, fix our tea, let dogs out, then Jim gets up. Someone cooks so they can have dinner before leaving…after they go to work, I clean the house up, maybe go visit my grandparents, go to doc appointments, and maybe the store if I’m able to that day, but most days the pain keeps me pretty pinned down.

On Jessies nights off, she and I watch Gossip Girl or some Lifetime movie and chat. If I’m up to it, we might even get to go to the theatre or shop a little bit…same for Jims days off…usually as a family we go see a show or sit home watching Netflix. Sometimes the whole family gets together for dinners on Sundays or for birthdays and holidays. And now on Sundays I’ve been going to church with friends.

So, there you have it. My life in a nutshell…condensed of course, I left out mundane tasks of daily life for the most part…or is my whole life mundane? lol

But as I was driving home, thinkin bout my evening…I felt happy. Felt like I was looking forward to my routine. Since my whole life changed with these illnesses, it’s even more boring than it used to be…not that I was ever too exciting, but not being able to work, and not having young children at home anymore…leaves me with little to do. But somehow the days still speed by me and I can never figure out where the time goes!

It’s a quiet life. Yes, it’s filled with many, many extremely painful hours and lots of frustration over my whole digestive system and the medical communities inability to do much for me…but I like my life! I look forward to talking with my family members about their days at work, watching shows with them, laughing with them and joking with them…teasing each other and playing with the animals…it’s a good life for me.

Some people probably couldn’t imagine living the way that I do, day after day. The ones who are always on the go…always going somewhere, making plans for something, or working outside the home…but it’s working for me. It sounds cheesy, but every morning that I wake up, before I roll over to take my meds, I thank God for giving me another day here on Earth with my family…whether filled with pain or not, its also filled with joy…and I am CONTENT.

 

That’s pretty much my life

Worry…

lettinggotobefreeI am a worrier. I was born to a worrier, as was my mother and her mother. I’ve always liked the saying that worrying is like a rocking chair…it will keep you busy but get you nowhere.

I worry about my kids every minute of every day…I worry about my family, my husband, my pets, my home, myself…my mind never quits.

I worry I won’t live long enough to get my family situated…but I also worry that my existence keeps them from getting there. Somedays I beg the Lord to let me live and other days I beg him to call me home.

Serious and continuous pain screws with your mind for sure. I want to live so badly, to watch my family grow…to be here to support them and guide them…I pray constantly to be able to be a wife, mother, daughter, granddaughter…a person. Today has been a day where I dont know what to pray for.

Why does the pain have to fight to get past the 10 scale? Isn’t it enough to stay a steady 5 or 6? Why must it have moments where it rips right thru my soul? Makes me hate everything? I don’t like ME when the pain goes off the charts… I keep to myself so as not to bite anyones head off, if I can. I live in fear that all my days will be full of this increasing pain, yet I think I would prefer it to death, or would I? I’m sure the constant worry about others and myself just increases my minds perception of the pain.

Worrying is really such a wasted energy. The people you’re worrying about don’t benefit from it. The worrier doesn’t benefit from it. It won’t stop any catastrophe from occurring. So why is it such a strong urge in some people? For me, it’s out of such intense love and caring for my family. I always feel if I could worry in advance I could somehow stop something bad from happening…as insane as that is. It’s out of some crazy thought that if I worry about them, I can keep them from being hurt or disappointed or…something.

But in reality, worrying doesn’t help them and it doesn’t help me. Worry and stress can literally kill a person…lowers the immunity…drives you slowly insane. In my opinion worry is tied to intense love for the people you worry about. Also, being chronically ill gives a person more time to sit and fret over things. I guess I’m too sensitive, I feel too intensely…love and care too deep. It feeds the worry monster.

There is one worry, that just this week I’ve come to feel I can stop. I always worried about being here for my family…to raise them and guide them thru life. I no longer feel they need me here to do that. They are grown and manage okay on their own. So it’s a prayer God granted me…keeping me here long enough to get my kids grown. I am grateful for that. I wish worrying had an on/off switch. But, it doesn’t, so us worriers just have to try to focus that energy elsewhere.

I envy the laid back people in the world. The ones who don’t worry. Who just let things go as they may. Leave it all up to the universe. The old saying “Ignorance is bliss” really has to be true. The happiest people seem to be the ones who don’t worry, who have few responsibilities, who don’t try to look into the future and stop some possible calamity.

So, tonite I think I will pray for ignorance. Ignorance to all the bad things that can happen in the world or to the people I love. Until that prayer is answered, I’m afraid I will keep….Worrying….about trying NOT to worry!

Am I Here?

She sat in the car. Feeling numb and sluggish. Thoughts floating in and out of her mind. How did it come to this? How had her life ended up here? She was a young girl once, with dreams and ideals. She had goals for her life. Ending up a useless, sick middle-aged nobody wasn’t one of them.

Growing up was hard. Her parents weren’t ready for such a monumental job as parenting. They were young and immature, but it’s not their fault her life went nowhere. Yes, there was the almost constant physical and emotional abuse in the house thru the years, but she had good coping skills. She was a people pleaser, always trying to do the right thing, be the “good girl”, the “good student” the “good” everything. She didn’t always succeed, but more often than not, she did.

She wanted to be a lawyer. She wanted to do family law, so she could help children from abusive homes, help women break away from controlling husbands. But as senior year came, the reality of needing either alot of money or huge scholarships, slapped her square in the face, and life happened instead.

She got married, to a controlling and abusive husband. Had three beautiful little boys, who she loved with all her heart. Not having a career, or a loving relationship, left her alot of time and energy to place all her love on those boys. They were her life. They are who she lived for.

She stood between them and her abusive husband when he wanted to instill harsh discipline. She made sure things stayed “just so” around the home to keep the peace. She made excuses for the boys when their rooms weren’t tidy or their grades weren’t stellar. She made sure to always scrape together enough money to give the boys wonderful birthdays and Christmases! Seeing them open their gifts or blow out birthday candles with the glow of pure innocent happiness…made all the bad things in life worth going thru.

The years passed, the boys grew. The older they got, the less they needed her. She still stayed the “buffer” between the kids and the rest of the cruel world. Sacrificed all she could to make sure they were happy. The oldest, Christopher, was the first to move out, at 21 he was in a serious relationship and moved in with his girlfriend. He was such a good kid growing up, much like his mother, he was a pleaser. She worried most about this one though, as he was just a tad on the “sensitive” side. He felt things deeply and and felt as though he was not the perfect person he thought everyone expected him to be. Much as she herself felt.

Her middle son left a year later, off to California to live with friends. This about ripped her heart out. The thought of not having her child within a car rides distance was almost too much to bear. But with texts, emails and Skype, she was learning to deal with this “bad” situation, much as she had to learn to deal with so many “bad” situations in her life.

At 18, her youngest Kyle was the last one at home with her. Her baby. He had become the closest to her emotionally of her children. Probably a bit more sheltered and fussed over, being the baby of the family. He seemed to really have the most empathy. He tried to look after his mom. He was the one who noticed when she started to lose weight and stay in bed somedays. He was worried about her, but he was leaving for the Army soon, his dad thought the Army would “toughen” him up. Kyle wasn’t interested in being tough, but felt he hadn’t many options but to join up.

Why get out of bed? She thought one morning around 10am…what’s the point? Would anyone even notice if she didn’t? Other than the dishes in the sink, that might be the one clue to anyone that she wasn’t around that day. What’s she going to do now? She has raised her children and now they are gone. They no longer needed her. Her husband only needed her to bring him his beer and keep his house clean.

The days dragged on and on…the only bright spots being the calls and visits from her sons. They weren’t very frequent though…they were busy with their own lives now. It hurts to feel you put all your love into these little lives, only to grow older and more alone with very little love in return. She felt fatigued more than anything really. Her whole body ached somedays, so she did the chores that couldn’t be ignored and that was it.

At Kyles insistence a year later, she saw her physician for the fatigue and weightloss. They drew blood and performed some other tests and she went back to her daily existence. A week later, she received a phone call. The doctor told her the news right on the phone,..the news wasn’t good, nope, not good at all.

Pancreatic cancer. Which equals “Death Sentence.” She was in a fog the first week after the diagnosis. Just stumbing thru her days, mostly in bed…even her uncaring husband didn’t ask anything of her. She didn’t want to tell the boys right away. She didn’t want to have to draw up the energy to console THEM.

She didn’t have much time left at all. Less than three months. How would she get everything ready in such a short time? Especially when the last month would be a mostly bedridden one? She went about making her own funeral arrangements and after a week, finally called her sons. But none of the three could seem to agree on a good day for them to come for a visit, they were all so busy, with work, relationships, vacations…she told them this was important. She needed them to come.

When they finally arrived, each grumbling about what a kink this visit was putting into their current schedules. She had worked all day on a big dinner. Glazed ham, garlic mashed potatoes, brussel sprouts, white corn, homemade biscuits and gravy. By the time the table was set, she was in so much physical pain she could barely carry the meal to the table. With tears in her eyes, she began serving.

Noone noticed that she didn’t eat, just pushed food around on her plate. The men all carried on a boisterous conversation about current affairs, politics mostly…the one topic she couldn’t stand to talk about or even listen to.  They laughed with their father, joked with him, agreed with most of his views. Have they forgotten how this man behaved toward them growing up? Don’t they recall his tirades? Do they even remember their mom having to stick up for them or keep them from being harshly punished? Do they remember her staying up with them all night when they were ill? Or staying up to help with a last minute science project? Do they recall her holding them, rocking them or consoling them during each of their youthful “crisis” of the moment?

Do they see her as a person? As a woman? As a little girl who sat in the woods, dreaming of the day she would be in a court of law, sending some abusive man off to jail for the atrocities he had his family endure? No. No, they see her as mom. Nobody amazing or special. Just someone who was there whenever they wanted her to be, but who disappeared when they didn’t need her.

She was disposable. She was invisible. She, who had always tried to so carefully “control” her little piece of life…was nobody. But, she wasn’t going to let cancer control how she would die. This she really could control.

Of course the boys all cried and expressed their grief over the fact that she was indeed going to die. She patted their backs, and hugged them and dried their tears. She assured them that she was in no pain and that although she would be leaving them, she would always be in their hearts, and would be forever watching over them from Heaven. After a week of this, they all had to get back to their lives…and she got back to her “non” life.

But now, here in the car, with soft ocean sounds coming from her cd player, the engine quietly idling, she was once again dreaming. With her eyes closed she was once again that little girl, sitting on a stump in the woods…the sun shining down thru the leaves. The trickle of the nearby creek being the music then. She dreamed of the life she thought she’d have. She was important. She was “good”. She was needed.

To that she drifted off to sleep, in a heavily medicated fog, mixed with the carbon monoxide from being in the car…in the garage…for most of the day, without ever having been missed, by anybody.

 

I WAS Here

Being forgotten is worse then not being noticed.

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

Insult to Injury

Image

 

 

“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

 

Image

 

 

I’m SCARED

I yell…I’m SCARED

I cry…I’m SCARED

I judge…I’m SCARED

I order…I’m SCARED

I demand…I’m SCARED

I scream…I’m SCARED

I want perfection…I’m SCARED

I want help…I’m SCARED

I want encouragement…I’m SCARED

I want order…I’m SCARED

I want empathy…I’m SCARED

I’m in PAIN…I’m SCARED

Image

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

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

I’M SCARED!!!!!!!!!!!!