Content…

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…

I 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…

 

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

 

 

“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

 

 

 

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

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!!!!!!!!!!!!

The tidal wave of pain….

I’ve been washed away, with the wave of pain today.

Tomorrow I will wake up, and grip my coffee cup.

And I will pray and pray, for the pain to go away.

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

“Hit Me With Your Best Shot!”

Well, it’s a little after 10:30pm. I’m where I usually am, on my bed with the dogs, watchin the recorded Waltons of the day. I’m still dealin with bronchitis, chest is feelin really tight, probably shoulda went in to doc today…will Monday if not significantly better I think.

I had a pretty okay day today. I forced my pain riddled body to get up and pull on some jeans and a tshirt, and my “Crazy Dog Lady and Proud of It!” Hoodie, and crawled into the van and drove up to our little lake cottage. It was a sunny day, but cold. The drive was nice, there are still beautifully colored leaves on some of the trees! It’s only about a 40 minute drive, I was pretty sluggish on the way there. My mission was to get to the cottage and clean out the fridge and pantry for the season. I’ve been wanting to get that done since the end of August, but just havn’t felt up to it.

So I got there and threw out anything bad, scrubbed out the fridge, then loaded the good stuff and the bad stuff (lettuce in a bag for a couple months = gross) into the van. By now my blood was kinda pumpin, so I thought I would hit the Dollar Store on my way outta town to get a few groceries, and I did…including milk and eggs! It saved me a trip to the “real” grocery store…alot smaller area to cover. I am sure I looked a fright considering I didn’t comb my hair or put on makeup and was a bit dirty from the fridge…but…oh well!

Got my purchases loaded up, climbed in and started for home. The day was still sunny, the drive so pretty…alot of farmland, cows, horses…it made me sit there and thank God for all the beauty he created…I truly said thank you for each thing outloud as I drove!

Then I decided to put in my fave rocker chick (well maybe that’s a tie with Joan Jett)…Pat Benetar! So for the rest of the drive it was me and Pat belting out her best work! Yes, it hurt my belly and lungs…but I held the wheel with one hand and my belly with the other and I sang my heart out! Of course “Hit Me..” got played more than once…cuz that’s how I feel when I’m fightin…bring it! I’ve not been fightin much lately…been in the corner with the icky spit bowl droolin like a fool. I’m gonna put my mouth piece back in and go back in the ring again. I might get sidelined again here and there…of course I will…I have too many serious health conditions not to, but I will keep standin back up, I’m like that big blow up punchin bag clown we had as kids…lol

So, I enjoyed the day for the most part. I’m suffering a bit extra for it, but I’m okay. It was Veteran’s Day and I also thanked God for all the Veteran’s and prayed for their families, and thanked God mine was safe too.

Well, my chest is feelin pretty tight and icky, think I will break out the Vicks and take a bath in it. Hope you all enjoyed your personal 11-11-11!

T

cRAzy GiBBeriSh…

 

Just laying here after another particularly bad pain day, with the nausea and constipation thrown in for shits n giggles as a particularly funny n sassy nurse I had for my ostomy issues used to say…I loved that nurse…Sylvia…she was a wound nurse at St Joe. Sometimes that poor woman had to tend to me five times a day, my ostomy bag just wasn’t fitted right for my complicated ostomy. She tried all kinds of tricks, but mostly she kept me and Jim calm, as she taught HIM how to handle all of it. She would make me laugh…which is a bad thing while you’re gettin your bag changed…I won’t go into detail. She was a sassy one.

That’s all about that, not sure why it popped into my head…just that “shits n giggles” phrase. And trying to decide what if anything can ever be done about my messed up innards. The increasing and changing pattern of pain, the increasing depression and feeling of my life just going nowhere.

I’m 44 now. 44 should be a fun year! Kids are bigger, self sufficient, or gone. Sposed to start “jazzin” up the marriage and gettin your life back…right? Well, unfortunately for us, the “plan” is different. It’s me, still having the belly that looks eight months pregnant due to the massive hernia and the pain that keeps me from breathing from the major and complicated adhesions that have glued to my abdominal wall and all my organs, making removal extremely dangerous and life threatening.

I’ve yet to train myself to stay away from normal foods. If Jim makes spaghetti…I eat a bowl…then I know in a few hours I will be doubled over in pain crying and damning myself to hell for being weak and eating it. I don’t know how to to this. I need this new eating plan, but NO ONE has helped teach me what to do, how to cook or puree or whatever. I can’t just do Ensure shakes, it gets old. Can’t do mashed tatos daily, boring. Cream of chicken daily..nope. I need variety, texture, taste. But I need to do it and I KNOW I do.

I truly have no ambition anymore. I’m a slug. laying on the sidelines having a pitty party I guess is what some would call it. I guess there are days I might need pity. Some people have it worse, this I do know. But if I had the cancer, they told me what it was, what the fight would be, the plan, the side effects…then the remission…so done with it fot awhile..maybe for good.. If I got mrsa or gangrene in my leg, cut it off…done. With my bod its too complicated. I’m sick of that term. Yes, it’s too complicated because some moron got in there with sharpi instruments and started chopping around like a monkey let loose on a watermelon. He messed it up so bad, other doctors can’t even begin to come up with a plan to fix it.

I’m supposed to be glad I’m alive. Well I am on somedays. I WANT to be alive dammit! But I want to FEEL alive too! I want to walk, grocery shop, dance, swim, cook, hike, travel…I wanna PLAY!!! Intead, what ya have here i s a woman who can’t do most of those things, atleast not for very long. I can deal with pain…but I want to know if its gonna kill me, is it a blockage? a ichemic lack of blood? Blood clot? Gas? I’m a person who likes anwers. I wanna research what is wrong with me, to find options to fix me. I can’t just sit here waiting to die.

They don’t like smart patients…no they do not…cuz then they gotta do some explaining and answering. That makes em uncomfortable…cuz sometimes I know more than they do…hmm hmm. They don’t like that..

This piece of defective wad of chubby flesh is mine still. I’m not impressed by it. It repulses me. I don’t feel like a woman really. Kinda feel like a pregnant one. Withouts the perks. I love babies, but those days for me are over. So grand babies are who I wanna be playing with. If my blimbo bod can move a bit.

I spent the day watching a Dr Redan in Florida, and his technique for removing adhesions. He seems very thorough. But I’m not convinced he could help me. I have alot of the very thick and tenacious bands of scar tissue, they are harder to cut and quick to return, all these sepra fils they use, I think were used on me and failed, as much of everything tried on me does fail.

Go ahead, mention my negativity…bad karma…I know all of it. I’ve read more positive books/quotes/faith based living, I have tried living like a nun who loves the whole world and just wants love and positivity for all….I do prefer it to the negative side I must say, but you will get more people to talk to you when you’re in misery than with you’e happy…proven pointl. Sad eh?

I did manage to “do the deed’ tonite..this after weeks of Mirilax, Colace, Lactulose, castor oil, prune juice and suppositories…soo woo hoo! One BM a month…and it’s a miserable and painful experience…nothing normal about it. IT’S AS PAINFUL AS GIVING BIRTH TO A NETTLE BUSH.

It’s an odd spot to be in. I WANT TO LIVE! I really do…I want to be with my family. I want to watch them grow. I want to be here to help them, guide them, take silly pictures of them, throw parties for them, host holidays for them…I”M MOM! I want to be here…yet, there are times when the pain take over and I SAY THAT I WANT OUT! JUST END IT ALREADY…but I don’t mean that.

Chronic Pain can make you say and do some crazy things. I find I’m starting to leave my family “goodbye” notes in books or my journal…I look for gifts that have meaning for when I’m gone. I feel I’m racing against a death clock, but I don’t know when the time runs out. I find myself pushing my seventeen year old daughter with information about life as fast as I can…clean this way, wash this way, cook this way, send thank you cards at this time…it’s crazy.I have sooo very many health issues, but it will be the adhesions or the blood clotting disorder that gets me in the end I spose. I’m bettin on digestive…but we shall see. If I could get to a better hospital with a higher caliber of docs like Mayo…and get them to keep me there, running a battery of tests, head to toe and figure out an answer that might just help me, help my pain, turn me back into a living and functioning human being…get the whole Dr. House team involved. Please see me! I’m a person…not a chart!

The doctor the initially perforated my bowel and neglected to notice it then went to Disneyland for a few days while I went to ICU on a vent….yea, I’ve just recently started thinking perhaps he can pay for my Mayo visit. I mean he got his rather large payout for butchering me, then my bills kept rolling to around 2 million….then I have recurring bills from the pain each month, meds, pain docs, pee tests, binders…last months emergency admit to hospital for bowel block/ischemia…the bills are just rolling in…but up to the ten thousand mark and I’m about to bolt. I mean really. These bills are whacked. who could pay these? Its NOT MY DAMN FAULT that this is happening! Call Dr. Cly! He’s rich! Make him pay some of this mess! Am I gonna lose a second home to medical bills? Am I gonna lose a husband who after being a martyr and perfect husband i gonna finally snap and ay he can’t take thi anymore?

Are my kids gonna think or say that they too are tired of hearing it and seeing it each and every day? Maybe so. Am I actually ruining their lives by being here?
I’m sure they worry, thats not good for them. Life i hard enough without worrying bout your parents as your just starting out.

My parents and grandparents are all getting to that state where they need extra help, with yards, meals, cleaning….stuff I want to do…I dreamed of caring for my family. I was a geriatric nurse. But they all know how ill I am and won’t let me help them, which frustrates me.

I want to be someone. I’m at that point where I want to feel I have left something good here in the world. a good memory…was I ever a good mom? What are your memories of the kind of person I was? What did people think iof me/? i REMEMBER some women saying they thought I was snobby but really I was just shy…funny how people can perceive us then how we really are I hate that. When I hear someone describe who I am and its so off target…how does that happen? I have softened as I’ve aged I know that…But life is scary and ya do wat ya do.

All I want is a chance. A chance to be seen by fabulous team of doctors who read my whole case and care and they run many test and find something to help me! Please help me stay with my family to love them longer!

Dr. Geoff Cly…you shoved a trocar thru my intestine and failed to note it…I almot died many time after this…sixteen further repair surgeries…gangrene, flesh eating virus, ostomies, wound vacs, fistulas…it was bad. I wish we woulda videod it. It wa a horror movie.

Durring court Dr. you said you prayed for me…I’m ure you did…you prayed for your butt too I’m sure…why don’t you do the right thing and pay for my medical care??? Even some mental health care…meds? A NEW LAPTOP that has the S key that works???

You Dr. Cly live the charmed life. My family and I suffer daily. I try to be the happy faced actress and somedays I can pull it off…but they are gettin fewer and farer between. Thanks Dr. Cly. In my opinion, you killed me on Nov 4, 2005.

I guess I need an obituary.
You prick.

I have so many clothes, shoes, purses, jewelery…but what for? I rarely leave the house anymore. They are my “just in case” clothes…for the occassional out to dinner or wedding or funeral…I I guess I just learn to purree my foods and still suffer with digestion. Its the movement of the intestines, pulling the scar tissue all the way down. Lets just add the blood clotting diseae, the degenerative disk disease, the osteoarthritis, the fibro, the bad teeth, the broken foot that wont heal…yea, I’m a package of wth.

I’ve never wanted alot out of life. Just a small, healthy loving family. Wanted to take care of them. Buy them special gifts, treat them to dinners, be the fun grandma who played with the kids and babysat all the time, had alot of pets I could walk and play with, go walking, travle a little…nothin major…just like Tennesee and Colorado, Florida and California…once a year…for Jim. I want to take care of Jim, instead of him caring for me.

I hate being this useless burden. I need a purpose. I need to knwo I’ve done a good job with my kids, and I feel I haven’t…I dont know how, cuz I tried really hard to be a great mom…I wasn’t perfect, I know that. I love my kids more than life, I swear, they are my everything. I want so much for them, and now I can’t do much for them and it makes me cry. They are good kids. Very good kids. They don’t smoke, do drugs, drink…they are honest, loyal, principaled, just great home loving kids, they are close to family and I love that. I’m so proud of them both I could scream it from a rooftop how much I love them!

I can’t just move on…wish I could…the pain says hell no! the pain wakes me up. The pain stabs me out of the blue. The pain burns and feels like I’m being torn up inside. The constant nausea is awful. The huge bloating is so unvomfortable.

I am just at that point where I gotta wonder…should I make a change? Is it to contact Mayo…who I can’t afford…is it to go live homeless or with other family member? Where to go that I would be the least burden…thats a joke eh? Sheesh.

My life woulda been so very different if Dr. Cly just would’ve recognized that he jammed that trocar thru my intetin and fixed it right there…I prolly woulda been ok…went on with life, back to nursing…who knows…right now I would love to work with Hospice patient….we will see what God decides.

Thanks for reading!
God Bless!