Tag Archive | doctors

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

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Insult to Injury

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“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

 

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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

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!

When Do I Wake Up?

This has been a really long nightmare…and I’m really ready to wake up from it. Really, really ready. I just can’t keep this up. I’m dealing with some Bronchitis right now, a yearly thing…praying I don’t spiral strait to pneumonia, I had the shot 3 years ago…am I still protected? Can’t remember, but at any rate, having Bronchitis is nothing anymore. Compared to my everyday pain and disabilities, having a lung infection is like a mosquito bite. But the coughing is really aggravating my adhesions and hernia, making the pain beyond unbearable. But I have to get this crap outta my lungs…its horrid. My breathsounds sound like a squeaky door closing.

Ever since being in the hospital about amonth or so ago, I’ve been in such a depression. Seven days I was there. I did NOT even want to go in. My doc acted like if I didn’t get into the hospital that day, I would likely die…I had held off for a couple days, then relented. Just as I knew would happen, they could do absolutely NOTHING to help me. My case is too complicated. My insides too messed up. More surgery would be just too dangerous. But they ran enough damn bloodtests, catscans and xrays … I’ve recently started receiving the bills…the part insurance WON”T pay is gettin up to around $10,000. Yep. You saw right.

Honest to God…they did NOTHING to help me while in there! Added a couple pills, which I didn’t even stay on once home because they are useless. My pain is unchanged and my digestion is unchanged and my pooping is unchanged! And now my mental status has deteriorated! Its absured. What on earth. HOw can my problem be this dang complicated…the only thing one doc said was to remove all my intestines and go with a bag, but that I may not survive and other organs may get injured because my insides are so glued together…so the odds don’t sound to good to me…but then again, neither does years living in the agony.

All I am is a financial burden to my family. I used to say I wanted to live for my family, that they need me…but do they? I don’t know if I’m even useful anymore. I spend alot of time in bed of course. Always having to say “I’m not feeling well”, “No, I can’t go, gonna rest today”…so many things I want to do. I would love to be able to take the boys more often, take them to parks and shopping. I would love to take my kids out to dinner or movies more often. I would really just love to be able to take a breath without wincing in pain. I want to be a normal mother and wife. Now that our kids are basically grown, its gettin back to just Jim and I…and here I am…a lump of uselessness. I can’t contribute to our finances, I just cause debt. I feel like Jim would just love to dump me and go find a beautiful, vibrant, healthy and financially fit wife! A Wife that could take care of him and do active things with him. I have told him that he is free to go, anytime. I do not want him staying with me like some martyr. I would take the blame, make him look like a good guy and just let him walk…he deserves better.

OMG. The tv is on in the background with some VERY annoying Ebay commercial that just about made my damn head explode! Some dumb girl talking/singing really fast about something…wow…totally triggered my ticked off button!

I want to work. I miss working. I miss being out with people. I miss being useful. I want to be able to help my family with their financial issues. I want to buy my family things. I love to give gifts but being poor does not allow this.

I had thoughts of getting my records and sending them to Mayo or somewhere that has doctors who actually have brains are…but since these medical bills have started rolling in…I’m figuring thats a big freakin NO. That was a tiny glimmer of hope I had…some Dr. House team at Mayo would get me in there and figure out a great way to fix me…so that I could live out my life like a normal human being….but nope. Not to be.

I’m just getting so angry. I honestly have tried over the years to keep some positivity. To read all the positive books. Keeping faith. But nothing good has happened…other than I’ve lived. So I guess that’s what I’ve got. But all that the living has accomplished is more financial debt and emotional stress for me and my family. I know there are people who are worse…I know it. But I also know that most people have no clue just how BAD I ACTUALLY AM! I look pretty normal, and I generally try to ACT pretty normal…I don’t like hunching over, moaning in public…so I sweat it out til I get to the car then I bawl like a baby til I get home and crawl to the bed. The abdominal pain is relentless, it’s every minute of everyday. It will never go away, ever. My digestion feels like knives going thru me, I am limited on what I can eat. Coughing, Sneezing and laughing make me cry…but crying hurts too. BREATHING HURTS! So there are moments where I think if I had another disease, atleast there would be a cure or cut it out or something. The constant nausea. Add in the Fibro, my body feels as if its been a pummel bag for a very pissed off body builder. My spine has DDD and ruptured disks, failed surgery…so moving just sucks. My hips have arthritis that wake me up from sleeping with a burning pain that makes me want to rip my pillow in half. My teeth constantly hurt. This blood clotting disease keeps me in constant fear of stroke. All these meds are poisoning my liver…so its just pain, pain and more pain.

Oh the meds…that’s really a sore subject this week. I have been going to the Centers For Pain Relief for years now. They have prescribed me pills all that time without much change. I have always used the same pharmacy as well and have kept the same family doc. Because evidently there are drug fiends out there who either doc or pharmacy shop or sell or abuse their meds, therefore I must be watched like a hawk and treated like a junkie, as was evidenced by this weeks appointment where it was my turn to take a random pee test. Well guess what? I DIDN”T have to PEE! I also have bladder issues. I only pee like twice a day. My bladder can hold more urine that my urologist says is possible…yet I do it….and I get lots of infections, and sometimes must self cath.

Anyway…they don’t care that my bladder can’t produce. They make u stand in the hall..in front of everyone…and force you to drink massive quantities of water until you CAN pee. I ended up at this appointment for over an hour and twenty minutes. Most of it standing in the hall, in pain, embarrassed, praying to pee. I was in the bathroom on three seperate occassions, hand in sink with water running on it, practically crying cuz I was so frustrated.

I finally went and they gave me the oh so horrible prescriptions and let me leave. Ya know, people with diabetes have to take meds, people with cancer do, people with all kinds of diseases take meds. We treat people who are in REAL pain like drug addicts. I had never felt that way myself until this happened. I thought I was lucky, well and I do everything right. I’ve never asked for extra meds, never taken them in a wrong way, never lost any, always take as prescribed…I have never once gotten any kind of high feeling from my meds…ever. So I don’t really understand how people get high from them or what good they are for that…but please don’t start making me feel icky about having to take these meds that are the only thing that allow me to even try to get thru a day.

So much is getting on my nerves lately, I guess cuz my body is my enemy and the doctor that ruined my body is out loving life. I have forgiven his mistake, but I still hold the grudge that he gets to enjoy his life…and I don’t. I can’t let it go. He ruined me permanently. Doctors in general now just tick me off. They don’t CARE about us. I’ve seen many, I’ve worked with many. We are CATTLE to 90% of them. They don’t care who we are as people. If they can’t diagnose it in five minutes they don’t wanna deal with you…they shove you down the line. Throw pills at you. If none of that works, they decide you’re crazy and move on…cuz God knows they have a two week Italian vacation coming up! They don’t have time for your pesky problems, especially ones CAUSED by their own profession! Scared of law suits. Their God Complex makes them impotent to perform on cases like mine.

All I want is a doc or a team of docs preferably that care. That will take the time to try to help me. Just ease the pain by half. Or give me an easy YET tasty diet that helps. Cut down on these pills, yet still take care of the pain…just help me! There is more going on in me than adhesions and hernias…I know it…but they aren’t finding it, cuz they are not trying hard enough.

Since I’ve been down so much, I’ve watched a bit of tv. Also tickin me off. Dr. Phil has had alot of “young adults” on there who think the world owes them a living. These spoiled brats think they can graduate high school, barely and walk right into a 2,000 sq. ft. fully furnished home, with a brand new car, sit on their butts playin video games, gettin their nails and hair done weekly, full star studded wardrobe, limitless foods, designer dogs with all the fixins….and not work…or work very little…they just think this crap is owed to them!

I moved out at 17 (well its complicated..I moved from home to home from 13 to 17), but my first apartment was tiny…not sure sq ft but maybe like 500ish. I got furniture from Goodwill, used milk cartons with sheets over them as tables…I had a junker car that barely kept runnin, my dad had to do somethin to it weekly to get it on the road…but my point being…I didn’t expect anyone to give me a full blown life after highschool! I knew it would be a struggle. Yes I had money problems and had to go beggin to family members here and there, even moved home…but it just seems kids these days think they should have the best of everything the minute they move out…the big tvs, blue rays, xbox, cool furniture, best decor….I mean…daaaang! Work for your junk! Live BELOW your means! Learn how to budget! Learn to appreciate what you have!

Ugh. Well, that’s my crazy pain lady rant for today…I’m short of breath and just need to lay down again…take some decongestant. Pray for sleep. Thanks to anyone who read this…I appreciate being able to vent…especially when people actually understand my pain a little bit!

Its gettin to be ugly weather….so hope all the fibro and arthritis peeps are hangin in there! xoxo

AND PLEASE!!! SOMEONE WAKE ME THE HELL UP SOON!
T

Doctors:

Why do we put our lives into a strangers hands?  You wouldn’t you say?  You do, each time you go to your doctor.  We rely on these men and women to take care of us.  To keep us healthy.  To cure us of disease. 

We don’t KNOW these doctors.  We don’t know what their childhood was like.  We don’t know what their marriages are like.  We don’t know what kind of grades they got in medical school…were they in the top half or the bottom half?  Most of the time we don’t know if they have been involved in a malpractice lawsuit…oh, you can try to check on healthgrades or some similar site., but it isn’t always noted…if they settled out of court for instance. it won’t sometimes even be on their record.

Do they CARE about their patients?  Or are they just putting in the time until they can retire to full time on the golf course?  Are they alcoholics or drug abusers?  You can’t always tell….and you would be suprised at the numbers.  Do they even READ your medical history?  I know for a fact that some don’t.  Some never even look at your chart….this is why you find yourself repeating your health concerns repeatedly.  Do they UNDERSTAND your illness?  If it’s a broken bone…they sure do!  Heart condition?  Usually.  But if it’s a more complicated illness, like auto immune diseases (Lupus, APS) or a chronic pain condition (Fibro, CFS) they aren’t so good…cuz that would require them to do extra research…once they graduate med school they don’t feel the need to do a whole lot of that…oh, they must take classes/seminars…but they aren’t often worried about such things.

When I was in the hospital,. there was an instance where the physician that was in charge of my case because my normal doc was busy in Disney World, where he literally NEVER entered my room.  Never touched me or looked at me.  He stood at the nurses station and wrote in my chart…but he never came into my room…while I was on a vent in a coma and my intestines were outside my body.  That man was in charge of my life.

To alot of doctors we are charts.  They dont know us as people.  They don’t CARE about us as people.  We are a means to an end.  They are more concerned about their big houses and fancy cars.  Their boats.  Their vacations. Their country clubs.  In some cases…their NURSES and mistresses. But in alot of cases. WE are just a number.  Some are just going thru the motions.

I love on tv when they show doctors who actually KNOW their patients…like they are friends!  They know all their health history and their lifestyles…that would be awesome!  Then you could feel like that doc was giving you good medical care…like they knew you and cared about you!

With my very complicated medical history I live in FEAR of anything new happening to me.  If I passed out right now…and was sent to the hospital…they could really screw me up…because I am on soo many medications…because my abdomen is very delicate…if they cut into me without knowing what they were doing, they will most certainly kill me (my intestines are all glued together and glued to my organs and very close to the skin…no muscle wall protecting them).  I can not say with any assurance that my family doctor would even think of that.  I’m on blood thinners, of course that is on my chart…but it was on my chart in the hospital and mistakes were made.

There are soooo many medical mistakes made and sooo many ways to cover them up.  So many that are not reported and some that are reported but not fully disclosed.  We as healthcare consumers are on our own.  WE have to be responsible for our own healthcare needs.  We have to investigate our doctors. but even then we cannot rely on the info we find.  We have to choose our docs with our gut along with what we find out about their education.  We have to keep our own set of medical records up to date.  We have to KNOW our medications well and know the side effects and what interractions with other meds or foods there are.  We must ask questions.  We must research our illnesses…our symptoms. We have to educate ourselves.

The day of going to the town doc and just leaving everything up to him is over.  I hate going to doctors…for good reason I would say.  But I DO have to go to them.  New ones at times.  And it sucks.  I HATE it.  Just like this new urologist I am seeing.  He has me cathing for what he says is urinary retention.  I believe there is more going on than just that.  But, I’m doing what he has prescribed for now…waiting for that return appointment where I can ask for further tests to be done….because although i do have retained uring…it’s not much, and my symptoms have not gone away since cathing.

It’s scary to be a person who has several illnesses to deal with.  Let me see…what all do I have…1) Antiphosphosipid Syndrome (potentially fatal blood clotting autoimmune disease) 2) Lupus 3) Adhesions/Neuromas/Scar tissue/Hernias (due to botched abdominal surgery-also potentially fatal due to bowel blockage/strangulation) 4) Degenerative Disk Disease and ruptured disks in back 5) Osteoarthritis of back, hip and knees 6) Mitral Valve Prolapse 7) Ruptured tendons in elbows 8) Fibromyalgia 9) neurogenic bladder 10) Really bad teeth…lol.

Current symptoms I can’t figure out…but are not medication related….are, extreme nausea and fatigue…more than the norm, and flank type pain and my eyes ache and are very tired and the whites are bloodshot and greyish looking. I’m afraid it’s liver related…or kidney possibly.

I dunno.  But I just feel like doctors find me confusing.  Like I’m just too complicated…maybe they don’t know where to begin…or are afraid to do anything…lol. Don’t get me wrong.  I respect the doctors that are really trying to do good.  The ones who treat us like people…not cattle.  I respect how hard they’ve worked for their license.  I just get tired of seeing the ones who just run you thru like a car wash.

I’ve done some research on Medical Malpractice…and it’s just astonishing what’s going on out there.  It’s downright horrifying. But we NEED doctors.  We have to go to them.  We have to depend on them.  We have to trust them.  But you better do your part.  And even if you do…add alot of prayer and faith in God to get you through.

To all the doctors out there who actually CARE about your patients…God bless you.  To the one’s in it for the money and prestige…God help you.  To the dumbass who butchered me….I hope you think about it each and every day.

So…this was my 50th blog!!!  Woo Hoo!  50!  The bigh 5-0!  😉

Thanks to everyone who takes the time out of their busy day to read my little blog with all my crazy ramblings!  I appreciate it!  I love the messages and support from you all!

“Live, Love, Laugh!”

Another day, Another pill….and so the saga continues:

Soo…had my monthly Pain Clinic appointment today.  Told them my belly pain is out of control again due to the neuromas and adhesions.  Thankfully they are always good about trying to help me with my pain.  They told me to stop the Percocet (which I took as needed for breakthru pain) and gave me an instant release morphine, as I am already on an extended release morphine.  Also, I told them that my elbows are getting worse and worse (even though I have not ran a vacuum or mopped or anything repetitive with them lately) and I told them I couldn’t afford more injections, so they gave me oral steroids.  They also then told me to make sure I take Prilosec or some other stomach aid because my tummy may get irritated.  Alrighty.

So, I walked away from the clinic with the hopes that perhaps the new meds will atleast dull my different areas of pain, even if a little.  Got the scripts filled.  Came home, popped them in my mouth…and waited with great hope!  The faster release morphine did indeed dull the neuroma/adhesion pain more…this pleases me!  I took the 7 prednisones (it tapers down by 1 pill each day, til gone), but my elbows don’t feel better yet…but I didn’t expect them to, I guess.

So, as I was filling up my pill box (M>T>W>TH>F>S>SU), I began to ponder once again, the effect ALL these pills are having on my body.  Especially my liver and kidneys.  It certainly can’t be good, this any idiot knows.  I began to think was it worth it?  Damaging my kidneys/liver just to get some decent days?  To be able to do something other than lay in bed?  Before the meds, that’s about all I could do.  The meds do NOT take away all or even most of my pain…not by any stretch…but they do make it just tolerable enough to have some semblance of a life.  But if you look up all the side effects and drug interractions, it is very scary.  I am very careful with my meds, and look everyone of them up and check out the interractions and all…and it does worry me.  Alot. 

Large View

I have given thought to just slowly stopping all the meds.  But the fear of that SEVERE pain I know is there, stops me cold.  There are many days … even on this plethora of meds, where I cannot move.  I can barely breathe.  I cry, or sometimes cry inwardly, because it hurts too much to cry outwardly.  I contemplate suicide.  I contemplate homicide…(of the quack that made me this way), jk…sorta, I of course would NEVER kill anyone, but boy what I wouldn’t give for that man to live with this intolerable pain for one solid month!!!  That would please me so very much.  I simply cannot conceive of stopping my meds.  I NEED them to continue to function, even if at half capacity.  Even if it takes years off my life, atleast I will have spent some years doing what I want to do, rather than being bedridden.

Therefore I won’t stop my meds.  If my kidneys and liver give out on me, then so be it.  I know some people worry about addiction to narcotics or opoids in general.  I have done extensive research on the subject, and I know if used properly, you will not be an “addict” in the generally known way…you may develop a “need” for them, and yes, you shouldn’t stop cold turkey, but if used as prescribed, you are not gonna turn into a junkie.

If most people look at all the meds I take, they would gasp in horror…but it is what it is…and for me it is my lifeline of sorts.  The only way I can be out amongst the “normals” of society…lol.  So, I thank God that I have a good pain doc that does and can prescribe these meds for people like me.  I just wish there would be something else to help the pain.  Even now, sitting here all drugged…I am hurting very, very much.  I don’t get it.  I cannot imagine what the pain has turned into, since I started the pain meds, for it to still be this intense on them.  GRRR!

This is not what “The Little Girl” dreamed her life was gonna be.  This I know.  Doctor G. C. … I hope you know what you have done to my life.  To my family’s life.  But I know you don’t give it a second thought, as you take your family vacations, go biking, walking, running, play golf, raquetball, tennis, swim, boat…carry your kids around, whatever.  You ARE living your life.  I am surviving mine.  Thanks a bunch asshole.

Tryin to keep my sanity…in an insane world.

watch this funny video about pain and hospitals:

http://www.youtube.com/watch?v=j1kuIwXaV5o