Tag Archive | intestines

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

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pain or PAIN?

 

Wow.  I can absolutely not get a day off from pain.  I usually gage my days as normal pain and bad pain days…But the past two days have completely slapped me in the face with another level of pain…one I have definitely experienced before, back in 2005 and 6 when my intestines were on the outside of my body….the pain there has been a constant one, varying with different movements, levels of breathing, foods I eat, etc.  This pain, this PAIN…has me unable to move, breathe or eat.

My abdomen feels as if there is a wildfire burning thru my entire right side, with an occassional piercing knife jab here and there.  It’s hurting me so badly just to lay here in bed with the computer on my lap.  Not moving at all.  Why? All I’ve eaten today is a potato and a yogurt.  But I think it could be still from the Burritto I ate yesterday, I don’t know for sure though.

With all these adhesions and scar tissue, my intestines have strictures…so they are very narrow in spots, and perhaps glued almost together in areas.  They are pasted to my liver for sure, and I believe thats where alot of the pain is coming from too…but who knows.  I only know that I’m hurting…alot.  I’m scared.  Your intestine can perforate from the pressure when foods don’t go thru easily, mine moreso than others because of the issues, I am also at risk of “Toxic megacolon” due to all my problems and medications…where your colon becomes huge and poison seeps thru the intestinal wall into the bloodstream.  Severe obstruction and ischemia are also included in this nightmare of possibilities.

I have no real options.  My abdomen is “inoperable” the doctors have told me. Nothing they can do, as there is no abdominal wall and it’s just all “too messy” in there.  So what?  So I just suck it up? Just keep eating medications?  This is ridiculous.  If I had one of my other organs go bad they can put a new one in…and then I’d be up jogging like new…but because some butcher of a doc went in there and wreaked havoc…I have no recourse? No way of hoping for a normal life?  Pretty much.

But I am now praying for a normal pain or even a bad pain day…cuz tonights PAIN is more than I can take.  It’s really freaking me out and I’m hoping if I tell the nurses at tomorrows Pain Clinic visit can help me out…I dunno if they will order another scan or what…just had one not too terribly long ago…in fact just paid it off…God.  What a mess.  Back to praying I guess…hope someone is listening.

Butchered again!

I look so good...what could possibly be wrong?

Dr. Butcher wondering why I'm upset?

On November 3, 2005 I was butchered.  On September 30, 2010 I was butchered for the second time.  The first time as most of you know was during an ovary removal…by a doc whose name I won’t reveal quite yet, just in case.  Now during that surgery, there is no question that the doctor punctured my intestine with the trocar (a spear type intrument that pokes the initial hole in the belly for laproscopic procedures).  He failed to note this 5 mm hole, even though he knew he had gone thru the omentum which is a filmy covering that lays on top of the intestines.  He also ended up having to cut me open (laparotomy) due to finding adhesions in the pelvic cavity and not being able to get to the ovaries the way he needed to.

Now it may or may not matter to this scenario at all, but he was scheduled to leave on his family vacation some hours later (was his mind on the surgery or on his flight plans?).  At any rate, he left me in ICU and went to Disneyland.  For three days in ICU I grew more and more ill.  High temperature, delirious, swelling, copious drainage from the incision.  My husband kept telling the nurses, who said they had told the doctor on call for my original obgyn.  The nurses were even getting angry that the group doctor wasn’t doing more.  Finally on the fourth day a general surgeon was called in.

When she cut me open from breastbone to pubic bone, she was aghast at what she found.  My abdominal cavity was so full of infection that my intestines were the consistency of tissue paper and literally fell apart in her hands in sections.  But she could clearly see the hole that went thru one side of the small bowel thru the other right under the umbilicus.  She didn’t understand how it was missed.  My abdomen was left open for almost a year, first about softball sized opening, gradually to about a pingpong ball for my intestine to poke thru.  I had a wound vac attached to drain the infection.  I wore ostomy bags to collect waste.  I had drainage tubes.  I had central lines in my chest, peripheral lines in my clavical area, IV’s in my arms.  I was fed intraveniously.  I was in a coma and on a ventilator, as I went into respiratory failure due to the sepsis (blood infection).  My family was told to get my affairs in order in the beginning.  I endured around sixteen further surgeries to correct the damage, some to remove parts of bowel, some to debride the dead tissue.  I developed necrotizing faciitis (flesh eating disease) in my abdomen.  I had pneumonia (hospital acquired).  I had many blood infections due to the various lines.  I developed blood clots.  I had to go thru physical and occupational therapy to try to build my body back up.  My hair fell out due to stress and nutritional deficiency.  My electrolytes were dangerously out of whack at different times.  I spent most of a year in three different hosptials, including the burn unit and a nursing home type floor.

I missed holidays and birthdays.  My son graduated high-school and left for Marine bootcamp and I wasn’t able to celebrate with him and the family or prepare him or send him off as I would have had I been able.  The day he left for bootcamp, I truly believed I may never see him again, and I could barely get my arms around him to hug tight enough, then I sobbed like a baby. 

can't move...gotta layand cry and pray

There were moments during that year I can’t remember, mainly during the first three months…its pretty foggy.  But thru it all I can vividly remember the pain…horrendous pain.  I mean I was eviscerated, literally.  My insides were on the outside.  When they would change dressings I would be screaming in my head, if not outloud (but there was plenty of that as well).  The couple of times they pulled my vent tube out were extremely traumatic, suctioning was a nightmare…as they disconnect you from the vent and you literally cannot breathe while they suction the mucus from your respiratory tract…I remember laying there, looking up at the respiratory therapist while he watched the tv on the wall while suctioning me.  I was terrified and he wasn’t even looking at me, I wasn’t a human.  During much of this time I felt non-human.  There were periods where my hands were tied to the bed, for my own protection to keep me from pulling lines or tubes out, I can’t tell you how awful that sensation was.  I felt like I was going insane, and in fact at one point they diagnosed me with drug induced psychosis and depression…well, duh!

In November 2006 the general surgeon was able to finally close my abdomen up, they also inserted a mesh to try to fix the abdominal wall because all my muscle tissue was gone from the flesh eating disease and all the surgeries, this mesh has since then failed and I believe contributes to the pain. I can’t tell you how thrilled I was to finally be closed up.  I had scars like a map, no belly button and still had pain…but it was closed and my bowel was reconnected!  I could eat!  The pain gradually got worse and worse but I wanted to stay as far away from the medical field as I could, so I just took over the counter meds by the handful and limited my activity.  Then in July of 2007 we were rear-ended in a car accident.  I got whiplash (my neck was unstable from having neck surgery in 1999 and degenerative disk disease), I went thru a couple months of therapy for that, then was sent to a pain center where they started me on pain medications.  I never heard of Pain Centers before, so was thrilled there was a place that gave medications for people in pain…not just injections which I had received in my neck years ago without relief. Meanwhile my abdominal pain continued to worsen.  I saw my family doctor who said I would always have pain but did a CT scan, which just showed a large ventral hernia from breastbone to pubic bone.  I went to the Cleveland Clinic and that surgeon said it was a shame, but that no doctor would touch me with a ten feet pole with the condition my insides were in.  My abdomen is full of adhesions/scar tissue, all the organs are basically glued together.  I’m not a candidate for surgery because the surgery would be too dangerous, probable perforations and possible death.  That the only way a doc would go in was for life or death, as in the event of an obstruction or death of bowel or strangulation of bowel.  So these doctors said all we could do is manage the pain and change my diet.

So at the end of that Summer, while at the pain clinic being checked for my neck meds, I asked those docs if they thought they could do anything about my abdominal pain.  After their exam they said the pain was caused from many factors, the huge hernia, the adhesions, neuromas (little tumors on the ends of the nerves after being cut and resewn so many times) and just the movement of the intestines as they digest food (since they are glued to the abdominal wall and other organs)…it is a horrid pain, I can only describe as a burning, tearing, ripping and stabbing pain.  It’s worse with any increased abdominal pressure, such as laughing, crying, sneezing, couging, blowing my nose or lifting or pulling, also with prolonged standing or sitting or walking.  At any rate, these wonderful doctors put me on strong enough pain meds that it takes the pain from about an 8 to a 6…which means I live in constant severe pain…but it’s duller than when I don’t have the meds, and I’ll take it!

me waiting for the meds to kick in and help dull the fire!

I have to watch what I eat, as anything gas producing kills me, I can’t eat lobster, shrimp, redmeat, raw veggies/fruits or anything high fiber.  I spend most of my time in bed, on the computer, watching tv or reading.  I work very little and its a sitdown job.  I can’t do alot of things I used to do, like ride a bike, dance, hike or walk for long.  My hernia makes my belly look about 7 months pregnant. I must wear an abdominal binder 24/7, and they are uncomfortable and hot.  I can’t pull laundry out of the washer.  I can’t run the vacuum.  I can’t do alot of things.  My husband and daughter must handle alot of the housework, and care of our three not quite trained dogs. (But I must say, my life wouldn’t be the same without these dogs, they are with me on my bed most of the time and provide me with companionship and affection when no one else can.)

So, all that sounds like enough tragedy…does  it not?  Well let me add a bit more.  Now, I know alot of people do not believe in law suits.  I never liked them either, until this happened.  Now we have no money, so my husband went to a firm when I was still very ill, and for whatever reason they turned down the case and somehow my husband ended up with an attorney who did take it.  It was filed within the 2 year time limit for medical malpractice cases. Then due to the many hoops one must jump thru in the state of Indiana to get a case like this to court it took until September 27, 2010 for it to go to trial.  A jury trial, with seven jurors.  Now, we don’t have money for a good attorney…do you think the doctor had money for a good attorney?  HELL YES.  His attorney had around 10 partners and many assistants.  They had all this high tech stuff that looked impressive!  Had 4 doctors testify on his behalf.  Criticized our expert witness.  Tried to make me sound like a drug seeking liar.  Had the nerve to blame my fibromyalgia, claiming I had been on narcotics for that since 1997…which I was most certainly NOT.  My lawyer was outgunned in my opinion.  I don’t place blame on him, I mean he tried, but it was clear by day two that we were not making our case clear enough…my lawyer only called me, my husband and our expert witness to testify.  That surgeon who spent so many surgeries fixing the damage?  Yea, she refused to testify on my behalf, saying it was a mistake (she in fact herself has been sued more than 5 times I now find out).  A mistake….yes, the whole trial his “people” kept calling this a mistake, a mal occurance, a recognized danger of the surgery.  They kept yelling that I signed the consent KNOWING a perforation of an organ was a possible mal occurance of this surgery!  I agree.  I knew it could happen…but I also was told that should anything go wrong…someone would FIX IT!!!!

The wise jury of seven, took less than 45 minutes to find him NOT GUILTY of malpractice.  When the verdict was read, that butcher doctor and his slimy lawyer smiled, laughed and patted each other on the back, then celebrated with the rest of their deceitful cronies, while we left the courtroom.  Stunned.  What the hell just happened?  How?  I cannot tell you the feeling.  It was much like the rape victim being victimized allover again on the stand.  That’s what they did to me.  They used my past medical history to make this surgical “mistake” look like either my fault or not that big of a deal. At one point during the Butchers testimony he said he prays for me every night and that he was so happy when he saw me because I LOOK so good!  Anyone who knows me, knows I am one tough cookie.  I also have pride.  I also try to look my best whenver I can.  So, yes…I had combed my hair and put on mascara and a pants-suit and was standing erect.  I had taken my pain meds so I could bear to sit thru this trial.  Was I sposed to look my worst?  Not comb my hair?  I have a wheelchair, I could have used…but I don’t do that.  I don’t show my agony to the whole world!!!  Only my loved ones really know the extent of my pain.  They see me crying almost daily, in the fetal position in bed.  They see my limitations.  I don’t want the worlds pity!  I don’t want that bastards prayers!  I WANT JUSTICE!  He should fess up to what he did!  Yes, the lawsuit was for money, as distasteful as that is! But I will have medical bills for the rest of my life due to this one event!  FOREVER!  I suffer every minute of everyday.  I was owed restitution.  Instead I got butchered, yet again.

My lawyer said we can’t appeal…and I figured, fine.  But when I started looking stuff up, that doesn’t seem to be the case….but I’m still looking into that.  If I can’t appeal, I have other things in mind.  It won’t get me monetary restitution from him, but it may get me just a minutia of justice, even just mental.  I need to make sure anybody who is thinking of going under the knife realizes the danger they are in, not to blindly trust their doctor.  Really be careful about who you choose as your physician.  Study about your illness or upcoming surgeries.  Dont’ just go to Healthgrades.com and accept their rating of the doctor, because if they have settled cases out of court it wont’ be there, neither with most malpractice cases or info.  I will try to educate people about that, and also try to change some of Indianas laws regarding malpractice, because quite frankly, they are bullshit.

So, here I am again, another Friday night in bed with the dogs, watching reruns.  But I’m not dead yet.  I have a fire in my gut of another kind.  This isn’t over…like I told my friend Julz…”It aint over til the fat lady sings, and I haven’t even cleared my throat!”

song requests?

Thank you for reading such a long post, I left some stuff out for lengths sake. Let me make it clear…I didn’t present every iota of this case nor was this doc found GUILTY of negligence. 😉

this blog is the property of tammy spice and tammy spice only

I will prevail.  I will.  Wait for it.  You will know it when it happens.

Long time no type?

Just thought I’d let it be known that I have not left the universe.  I haven’t been writing much because I feel I have nothing positive or useful or entertaining to say. That all still being true, I decided tonite to go ahead and scribble some jibberish out in the hopes that maybe…just maybe…it will help my over burdened brain to just let go…just let me sleep for Gods sakes!

I do not know what came first in this particular web of horror, the fatigue and lack of restful sleep or the escalating abdominal pain that I am enduring, along with one of the worst flares I have ever endured!  WTF???  I have tried Lunesta and now Ambien for sleep..may as well pop a couple tic tacs, same effect.  With all the meds I take I can only assume I am somewhat immune to the sleeping pills.  And I will say thank you in advance to anyone who would like to offer suggestions such as Melatonin or tea or dark bedrooms or no tv in the bedroom…yea, tried all of it.

I believe the problem is mainly my intestinal adhesions have completely gone freakin bizerk!  I guess I should clarify that, its not just my intestines that are cemented together, but ALL my abdominal organs and tissue…Liver, pancreas, bladder, stomach…all of it!  I was told at some point during the 15 abdominal surgeries I had to correct one doctors mistake, that I would eventually probably have switch to only liquids…and I believe that time is fast approaching.

When I eat, I feel full earlier than normal, then about fifteen minutes later…the pain begins.  The abnormally LOUD peristalsis starts up. It starts to feel like huge shards of glass are fighting their way thru my intestines.  I get killer heartburn. I feel nauseated.  And I can’t go to the bathroom, even after consuming all the products that claim to make that particular bodily function occur. (It has been five weeks…yes WEEKS! Since I had an adequate one)  My belly gets bigger and harder and more uncomfortable.  I try to eat things that are easily digested, but I’m human…and a stupid one that likes foods that are NOT easily digested…like vegetables, nuts, seeds, shrimp and steak.  I am usually good about staying away from red meat…but occassionally I just NEED a good steak or burger!

I know it’s not a huge thing in the grand scheme of things, but I LIKE to eat real food.  Food that needs chewed.  I get satisfaction out of chewing food!  Just one more thing that I must lose due to that doctors lack of skill.  A life of puddings and smoothies I guess is what I get to look forward to.  But I guess I should shut up, because if not the evil karma god will decide that it is time for me to lose my entire colon!

Gee, if you woulda told me ten years ago, that I would be blogging about my intestines and lack of the ability to evacuate…I woulda laughed in your face…but here ya go!  TMI you say?  I agree…but as I have said before, ever since this health crisis came about, I no longer believe in TMI…because maybe someone else out there has the same issues and can sympathize or we can help each other…whatever…I do not embarrass easily.  We are human, we all have the same parts and bodily functions, so deal with it.

All I know is that right now I am so damn tired I could cry, and the chicken I ate earlier has transformed into gigantic boulders of razor tipped bumper cars in my intestinal tract and it hurts to move or breathe and I am PISSED AT THE WORLD!!!  They don’t make a pain medication that can stop this pain I guess. If they do, we still haven’t found it.  I guess if I stop eating, SOME of the pain will indeed diminish…so ok…I will try to limit consumption, but it’s really hard to not eat, or to eat only soft or liquid things…atleast it is for me.  Everyone else is eating meatloaf or chili or steak…me? A cup of tea or perhaps A Slurpee.  Whoopdi doo!

So, that’s my abdominal area…let’s throw in the fact that my neck and back (both upper and lower) are so tight I can barely turn my head or twist my torso!  The pain is relentless!  These stupid Lidocaine patches wont stick either! Nothing works.  BenGay is useless..all the lotions are.  The only thing that helps even a little is massage, but no one can massage that much or often…Jim tries, but I can’t constantly be asking him for that.  The muscle relaxers help a tiny bit…but not enough.  Think I’m thru with complaints?  HELL NO!  My elbows! The ruptured tendons in them just will not heal!  Do you realize how much you use your elbows??? ALOT! And it hurts everytime I bed them!  Then just toss in the headache, achy eyeballs and other muscle/bone pain, and you pretty much have a picture of my pitiful world right now…oh, add a huge dose of STRESS to that little recipe as well.

I know there are people who are thinking, “God, is this all she does is whine about her health?” To them I say….”Screw YOU!” and then try to nicely say that no it is NOT what I do all the time.  I generally keep it to myself, stiff upper lip and all that jazz.  But this blog is for me to vent. The good, bad and ugly.  Yes, the bad and ugly get more page time…but they work harder to get there!

I haven’t even felt well enough to read lately…and I am surrounded by many wonderful books here on my bed…I lift one and start to read but my arms get too tired to hold the book up. I cannot find a comfortable position at all.  I move to the chair and my hip starts to hurt.  I have literally like 13 pillows of various shapes and sizes to prop on…but nothing is helping.  The tv is on…but there is nothing worth watching on…but I keep it for background noise.  To help drown out the fish tanks bubbling…which I truly love to hear, but it’s telling me the tank is low on water, and actually is way behind on needing a good cleaning…and I just don’t have it in me to accomplish such a large task right now, so I’m trying to ignore it a bit longer.

I am back to feeling like a slug in slugville.  Worthless.  Ridiculous. Whiney. This one is lasting alot longer than most…so I’m having a harder time snapping out of it.  But I will.  I just want to say to my readers that I have been reading your blogs…so amazing!  You ladies blow me away with your writing styles!  I could never dream of being in your leagues, but I am thrilled that you take the time to read my amateur drivel.  At times I thought I maybe able to inspire those with chronic health issues or even those who wish to write…but I’m thinking that was a pretty big dream for me to have, as I’m not feeling like a very inspiring human being as of late.  Maybe I will pull out of this pit and come out stronger and ready to rock and roll…let’s hope so!

For now, I’m gonna get my water bottle, swallow my pills, snuggle down into this huge bed and mindlessly surf thru the dish channels for something to focus on until my brain decides to shut down for an hour or two…or dare I pray THREE hours?!

God Grant Me Strength….yadda yadda….

I’m going to start reading To Kill A Mockinbird for about the tenth time, maybe it will once again get me inspired to do something, to give back…as it has in the past. Thank you Harper Lee

Thank you to my readers and my friends! I love all of you and appreciate your time and your words of wisdom!

Blog Carnival Introduction!

Well first of all let me say this is my FIRST blog carnival!  I had never heard of them before my wonderful cyber-friend Jolene (of Graceful Agony) introduced me to them.  What a wonderful idea!  I have had so much fun reading blogs since discovering them in February. Yes, I know blogs have been around long before that, but I just never actually READ them.  That is until I decided to start my own after another friend started one…he has since quit blogging, even though he’s a talented writer and should be writing all the time…but  that’s when I found Jolene’s Graceful Agony blog, and it really inspired me!  She is a wonderful person and a gifted writer and everyone needs to be reading her blog at http://gracefulagony.wordpress.com/ …but enough about her….this blog is supposed to be all about ME! lol (said jokingly of course!) 😉

Me.  Well, at risk of boring most of you I will keep the life history of yours truly as short as possible.  I’m a forty-two year old married mom of two wonderful children, a 22 y/o man and a 16 y/o young lady and of course I love them both more than any words could ever convey.  My husband is very devoted and supportive.  I have two dogs who keep me entertained and provide me with unconditional love and affection.  My childhood was very rough and dysfunctional to say the least, but I won’t type all that out, as it is pretty much portrayed in some of my earlier blogs (The Little Girl). I love to read and to write.  My favorite color is pink…but I wear alot of black and white because its easy…lol.  I love dogs and babies.  My fave tv show is The Office.  I love Steve Carell and Will Farrell.  I love all music, rock, pop, country, spiritual, jazz and more.  I love Chinese and Mexican foods the most.  I like a good margarita once in awhile.  I love good movies…especially the classics…Cary Grant, Bette Davis, Deborah Kerr…those are great movies!  I bite my nails til they bleed. I worry too much. I am a denti-phobe to the nth degree. So that’s a little about me, now here is about my chronic pain/illness!

My “adulthood” was going along fine until about 1998 when I was diagnosed with Fibromyalgia, after a few years of having mysterious aches and pains, and going from doctor to doctor.  None of the meds they ever tried me on helped much…so I just didn’t take anything other than over the counter meds after awhile…and just gritted my teeth and got on with life.

Then I started having pelvic pain that just wouldn’t quit. So in 2005 my OBGYN at the time said a hysterectomy would solve my problems…but that he would leave my ovaries so I wouldn’t go into early menopause.  I was all for anything that would stop the pain that was really affecting my daily life at times. I woke up from that surgery in more pain than he had led me to believe there would be and found out that I had hemmorhaged during the hysterectomy and required a few units of blood…but that other than that everything went peachy…by his standards I guess.

I recovered from that hysterectomy, but continued to have pelvic pain.  I decided in my infinite wisdom to find a different OBGYN as I wasn’t entirely impressed with the other…which now in hindsight was quite possibly a life-changing decision.  The new doc was young, handsome and had a great bedside manner.  He impressed me with his knowledge and I believed him when he said that my pain was probably due to the cysts on my ovaries and if they came out the pain may stop as well.  Now, my thinking was…that of course the pain would stop…there would be nothing else in that area to cause the pain…right?  So, I was too trusting and didn’t do much research into any of it and actually was looking forward to the operation to get those “things” out of my body so the pain would stop. I would take that pain back in a split second compared to the pain I must now endure.

That surgery changed my life forever. I will make it as short as I can.  During the operation the doc punctured my intestine and failed to recognize it.  He went to Disneyland for vacation…I ended up in ICU on a vent and medically induced coma, and remember very little for a few months after the operation except alot of pain and being restrained to the bed to keep from me pulling all the different lines and tubes out.  I ended up over the next year having around fifteen abdominal operations, part of my intestine removed, having ostomies, wound vacs attached to my abdomen where the wound was left open (about the size of a softball) and the hose was attached to a machine that vacuumed out the contents for months, I was fed thru a line inserted under my collar-bone, I had other peripheral lines up around my arm pits, or in my upper arm…which frequently ended up giving me blood infections that I also almost died from, I spent most of that year in 3 different hospitals, and some of it at home with home care nurses and my family working to care for me around the clock.My husband and family became my nurses.  I missed many family events of course during all of this…basically I missed my sons entire senior year and my daughters sixth grade year.  To shorten this section up, I will end it by saying the last surgery managed to close up my abdomen, but the pain is non-stop due to massive adhesions (my insides are basically like hardened cement…organs glued together and to the abdominal wall), the nerve pain called neuromas from the constant cutting, and I have no abdominal muscle wall at all in the front…I have a ventral hernia from my breastbone to my pubic bone and my intestines lay right under the skin/fat layer.  I can’t eat alot of foods due to digestion problems.  I must wear an abdominal binder 24/7 to help ease the pain and hold the hernia in.  I go to a pain center every month and must take narcotics to even take the edge off the pain.  I can’t do alot of the things I used to do, no bike riding, no running, no hard exercising of any kind…basically I can’t do anything that requires using abdominal muscles.  The pain is relentless and hard to even describe to people, it is like your insides are on fire while at the same time being shredded.  To say it makes everyday life difficult is an understatement, but I am alive. Living with pain, but alive.

So, since I know that was long…even though I really did leave ALOT of stuff out! I will finish up here.  About the time I started blogging and finding others out there who were suffering with chronic pain just as I was, there was alot of depressing thoughts going through my head.  I was feeling down and useless at times, and still do occassionally.  But I am a fighter, I always have been.  Stubborn some people would say I guess.  But it’s that stubborness that got me through that horrific nightmare that I lived through…and continue to live through. Stubborness and a wicked sense of humor!  I read self-help books and look for inspiring blogs on the web.  I pray alot. I always said I would continue to live for my childrens sake.  I now feel I will continue to live for MY sake.  Even though there are so many days that I am crying in the fetal position and ready to jump off the nearest bridge, I eventually dry my eyes and decide that I won’t give up that easily.  I want to live, even if it’s with pain that would bring most people to their knees, I want to experience life…to see the beautiful sunsets/sunrises, all the beauty nature provides, and to see my family, my children, my grandchildren.  I love blogging because it’s free therapy for me.  I can vent, I can inspire, I can joke (sarcasm is my specialty!), I can pretend that someone out there actually cares!

Wow…this really did turn out long…if it’s too long I guess my buddy Jolene will have to tell me to shorten it up and I will!  I’m thrilled to be involved in this carnival and look forward to hearing everyones story! To anyone who suffered thru MY long story…thank you for reading!

Hello world!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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