Tag Archive | sick

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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Feelings

Feelings. What are they? I’ll tell you what they are, they are all I can seem to discuss as of late. How I”M feeling, how OTHERS are feeling. What are YOUR pain levels? What are MY pain levels.  How many doc appointments you going to this week as opposed to me…what new med are you on? How does it make you feel? Side effects? Any relief? How bad are the adhesions ripping me apart this night or that night, how bad is my broken foot throbbing tonight, how’s the nausea? Headache? Back spasms? Left hip?  Energy levels? It’s easy really….Everything hurts worse than normal, drugs suck and so do their side effects. Fake interest in my health doesn’t help anyone. Yes, I get you have a life…one where you jump out of bed in the morning after a great nights sleep and you have a pep in your step as you brush your pearly whites and swish that Scope…check your nose for rogue boogers…grab a tasty Latte on the way to work…jamming to the latest tune…thinking about working out later…going to the Y, or maybe your work gym.  Maybe you have to stop at the store on the way home and grab some grub for dinner…zip thru the checkout lane…no problem!  You’re feeling great, your job is great, your family is great and most importantly your health is great.

This is what makes my FEELINGS seemingly very different from so many. I feel SICK. EVERYDAY. It’s not going to go away. It’s slowly killing me…I wont be making a recovery. People seem to think I should be “well” by now….”how long can this last?”  “Cant she go to a doctor? Have surgery?” How bout a bigger med center? “Maybe its the pills making her sick” “maybe she needs another medication”….or my favorites:  “She Looks GREAT! ” “I saw her out the other day…looked like she was smiling and laughing and having a good time!” “Saw her at the grocery store the other day! She was loading up that cart!”

Well, I’ve tried other doctors, Cleveland Clinic, all the moron ones here in Ft. Wayne…they all say surgery would only be done in a life or death situation, because my situation is so unusual and my insides are so scarred and twisted and glued together, and laying right at the surface, trying to find a place to even make the first cut would take a team…who couldn’t give definitive answers.  Better to just live with the pain and be glad I’m alive! I shouldn’t FEEL frustrated that the medical establishment made me this way. I should feel elated that they managed to save my life.

When I wake up, my first thought is on my belly cuz ive moved or inadvertently stretched and pulled those adhesions and they are barking back at me. I sit up and get my pill box, swallow my pills..hopin they kick in FAST.  I walk hunched over to the restroom for all that needs done there…I come out in search of coffee, but if its not alredy made…forget it…I’ll nuke some tea or have juice.  Jim starts discussing what we should have for a meal….I let him know that my FEELINGS on that subject are not registering yet.

My adhesions are growing around my other organs…it’s like an evil beast inside me….like a rubberband spiderweb. Every breath hurts, coughing, laughing and God forbid a sneeze bring on big FEELINGS. Mostly I just spew out vile cuss words that are aimed at the doctor who butchered me and his devient lawyer who got him off.  That was  a cut and dry case…and my FEELINGS on that are we were SCREWED.

My feelings on people who just do not get it. I don’t blame them. They don’t live it. How can they get it. I can see how it can be confusing to see me shopping, dressed,. make up on, hair done….I look okay….but look a little closer: My eyes are bloodshot, they are tired with no spark of life, my smile is stiff, my walk slow and now with a limp and shiny purple cane.  I walk slower, I search for places to sit and rest due to the pain that has shown up full force as i’m in the middle of Wall Mart. Im sweating profusely just due to the pain and trying to look normal like nothing is wrong.  I can’t think strait. I just want to go home to my bed. I hate this.  I hate people looking at me. I hate feeling foolish. 

I hate NEEDING help from people. I’m not good at asking fot help…other than from my husband and daughter…I ask them for lots of help around here…bet Jess can’t wait til she can move out like her big bro so she wouldn’t have to be here to have a ringside seat to my circus of FEELINGS.

I laugh, I cry, I scream, I pray, I cuss, I fall to my knees and i plead.  I plead to God, to the Angels…to anyone out there who will listen and care. After so many years of this your family and friends learn to tune you out…Its the same complaints everyday…they get sick of hearing it…I get sick of saying it. I try not to say it…but it comes up here or there…like “Hey, mom…can u drive me to the Mall today after school?” “Well, depends on how i feel I guess, but probaly” “Oh mom, you’re always sick but you can always get the job done. Which is when my Linda Blair head comes out and starts spewing that I get the jobs done cuz no one else is! I go into my laundry rant, dusting, garbage, dishes, dog hair…I let loose…but I get from one “I’m working 12 hours a day and do what I can” which I can’t argue with, I wish he didnt have to do anything but come home and veg. I get from the other one  “I’ve been being tortured at school all day with stupid teachers and I need some me time!”

I hate being asked How are you feeling today? I always say fine. No one cares how Im feeling. They get the glazed eyed look of omg, here she goes with her pain and sickness. Dont they know I would much rather be talking about going to the Y to swim! To go for a long walk thru a woods and have a pic nic. To go to a great rock concert…maybe Kid Rock or Aerosmith.  That I would love to zip thru this house and clean it from top to bottom all while blaring my Rick Springfield cd’s and reliving the 80’s!  That I would love to learn Pilates! I would be thrilled to be able to play softball once again! That I would love to sit and read a book in under three hours like i used to. That I want so badly to help others…to go to homeless shelters and help, to help abused women and children, to help save unwanted animals. I want to be there for my grandparents, parents and kids and husband for all their needs and desires. 

Right now FEELINGS are taking control. They are allover the place. Im sad. Mad. Frustrated. Pissed. Lost. Alone. Angry. Unappreciated. Scared. Hurt. Miserable. Up one minute, in the hole the next. I feel like i’ve been targeted to live in misery…its been bad since birth…when do I get to feel normal?  When do i get to experience living in a body that is perfectly healthy? Not even perfect…maybe just remove a few of my afflictions…I mean Adhesions that are taking over my abdominal cavity grabbing my organs and pulling me apart, tumors on the nerve endings from the 15 operations, loss of part of intestine and severe strictures make eating almost a miserable event, the Degenerative Disk Disease in my neck and back…constant spasms and knots, my Interstitial Cystitis where my bladder is on fire, Fibromyalgia where all my muscles and joints hurt so bad and the brain fog that tags along, the Antiphospholipid Syndrome that makes me high risk for more blood clots, so I must take blood thinners each day and keep tabs on my blood levels or I can die either from clot or internal bleeding. Anxiety problems. My teeth are getting worse by the day and the pain is bad. My eyes ache constantly, and give me migraines.  My left hip has been out of socket for a month from walking with a cane due to my right foot being broken…its taking forever to heal, and costing me  lots of medical bills.

I used to be a person. I used to have a life. I was vibrant. I was fun. I sang, danced and laughed loudly. I was good looking, I was funny and witty, I dressed well. I loved walking thru woods or graveyards. I loved swimming or just being near a body of water.  I loved going to the mall and walking around all day. I loved riding my bike. I loved trying out new exercise tapes…knowing I’d give up…but hey…it was a hope!  I have (had) a job I loved as a patient sitter, which I can’t do until my foot heals…I had a life too.

Now I’m in bed alot. With people wondering under their breaths whats wrong with me. But not really caring to know what is.  On the days I do get up dressed with make up…I’m so exhausted I must rest in between. One outting to a store knocks me back to bed for a couple more days.  I’m still inside this body. I’m in here. My feelings do count. They get hurt when I feel Ive been treated badly or been taken advantage of or lied to…or even worse patronized by people who do not know what theyre talking about when it comes to the multiple diseases I have. These diseases are life threatening. I don’t have the flu and I’m not depressed. I have multiple illnesses atleast two of which could kill me. 

So my FEELING is that Im sick. I hate it. But  I NEED friends and family who get that and who can work around my illnesses to still have relationships with me, don’t avoid me or leave me out of plans until you know Im too ill to partake. Feel free to pitch in when it looks like I need help picking up something I’ve dropped or if something needs done around the house.

I’m FEELING the only ones who understand are the other “chronics” out in cyberworld who are suffering like I am. I am lucky in that my family really tries to help me, they just sometimes don’t know what help needs done the most, or they have different ways of doing things, or they have lives of their owns and just don’t have the time to mess with my piddly problems.

My Grandma is 90. Her knees are bone on bone…its awful, and her feet are deformed from arthritis…but shes proud and she muddles around on that can or her walker a bit here and there. I call her daily, the conversation is always the same…it comes out of my mouth before I can stop it:  “How are you feeling today?” I KNOW how she’s feeling today, cuz it’s the same as yesterday…but I ask cuz I want her to know that I CARE about how she feels….so I guess thats why we ask….in some circumstances we do care how someone is feeling. But only ask if you really care and can really handle the answers.

I don’t know if I will ever feel better than i do right now, or if I will just continue to decline. I have a wish that I would find a caring doctor that was up for a challenge and could go over my rather extensive medical files…all of them, starting from having encephalitis as a child clear thru the fibro/lupus and botched surgery that really brought me down. Have him study it. To talk to me. To really care. To WANT to help me…..like the show House…he’s a doc I want! or anyone who really wanted to help people, to care about people…thats what I wish for.  A doctor who KNOWS me. KNOWS my history. Cares about my FEELINGS.

My feelings today are lonely, sad, feeling useless, fed up with pain, sick of people who are only absorbed in themselves and in seeing how much they can get, wanting, wanting, wanting, but they don’t want to work for all these wants…then have the nerve to act like their feelings are hurt or crushed, some people just don’t know how good they have it. Even i know with all my problems, I am blessed, because I know there are many others out there who are sooo much worse off than I am…so many. That is why I do try to make the most of my life…even if in a limited way…I want to find a way to help other people who actually NEED some help…Not the drama queens/kings who blow things out of proportion or lie about their conditions….nope, not them.

How am I feeling now? Well, the pain is ripping my belly in two…BUT my mind feels clear now since I purged it all out finally…My neck is in spasm and my foot is on fire. It’s another night of insomnia for me. But……………

You are certainly welcome to ask me “How you feeling lately” tomorrow! I may just tell ya!

I don’t have the energy to find pretty pics to put on here tonite or to check it over…just gonna post it.

thanks for reading and for caring, sometimes i find it interesting that the ones you want to understand you the most, are the ones who don’t take the time to know you, but that’s worked out pretty good cuz I’ve made some pretty awesome friends on here!

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.

Tired with a dash of defeat

It’s been a long past couple of months.  Pain levels spiraling out of control many days. Family problems suddenly coming out the wazoo.  Stressing out because I feel I am not working enough to contribute to our finances because the pain keeps me from signing up for too many hours.  I feel I’ve failed my family in many ways.  And frankly they have failed me in some ways. That’s just life I guess.  But family is all we have, so we try to work it out.  But when you have a chronic illness, it’s hard to add all of that crap to your already piled up plate..

Will there ever be a day where I wake up and say “Wow! I feel pretty good today!” and hop out of bed and the sun is shining and my  whole family is here, all healthy and happy and loving and honest and appreciative of each other?  Where I can walk around the house without h0lding my butchered abdomen in my hands.  Where I can bend over to pick up something off the floor?  Where I can walk the 2 blocks to the grocery store to carry home a gallon of milk?  Where my children look at me with the love and admiration they had when they were little?  Where my grandmother is healthy and strong and planning on living another 10 years?  Where my dog stops peeing in the house? lol…I just want some happiness.  I want normalcy.  I want this feeling of fatigue and failure to walk the hell out the door and never come back.

So many days I think I should just stay in bed and let life just go on without me.  I evidently do no good when I’m up, so why keep participating in this rat race that is going nowhere?  Why should I keep pushing myself?  Why keep caring and worry about others when that care isn’t reciprocated? Why bother to do anything but take care of myself…and I can barely do that.  I’m just this sick woman who has been living this illusion that me being around was helping others.  That somehow they NEEDED me to be around.  Now I know no one NEEDS me around.  Maybe it’s good that no one needs me….but since my health disaster in 2005, me thinking that my family needed me was what saved me. It was what kept me fighting to live. It’s what forced me to keep going.  Now what keeps me going? As a mom you get used to being needed and looked to for answers. Once they are gone…what are you to do? Especially when you are a sick person? 

I spose it’s just another funk I’m in due to the increase in pain. And the realization that things are not always what you think they are.  People won’t always stay the same or always be there for you.  Sometimes you have to watch people go away. There are alot of cruel and crazy people in the world who can weasle their way into otherwise normal people and make THEM crazy as well. Crazy is contagious I think…

So here it is about 1am and I can’t sleep, although my eyes ache with fatigue.  My hair is falling out again due to stress.  My gutt is feeling like there are two swordsmen in there battling it out. Maybe I have caught one of the crazy bugs, who knows…but I’m feeling a bit lost here.

I don’t know what I’ve ever done to be made to live this way, to be discarded from the world…I just don’t know…but whatever it was I would like to say right now to the Universe I AM SORRY! PLEASE FORGIVE ME! PLEASE EITHER MAKE MY LIFE TOLERABLE BOTH PHYSICALLY AND EMOTIONALLY….OR TAKE ME OUT OF THE GAME! I’M SICK OF THE BENCH.

Alone…

Been laying in bed, other than going to restroom for over two days now due to this kidney infection.  Talked to doctor offices on the phone about it.  Family doc has me on antibiotics, which I have been on one or another since last summer now.  This is the first time my kidneys have hurt like this.  The fact that I can even FEEL pain with all the opoids I take is beyond me…but my body must just love to scream out I guess.

Large View

I have an appointment with a urologist next Thursday…ONE WEEK.  If I make it that long without going to the ER, I will be so happy…but I dunno.  I do not want to go to the ER.  I do not want more damn medical bills, plus I would get there and sit out in chairs for hours, then triaged for a couple hours, left on a hard cot for hours, then there would be the whole med ordeal…whenever you are on strong pain meds, they give you “the look” and start calling docs and pharmacies to make sure you’re not a junkie…lol.

I feel like crap obviously.  Layin in bed on my heating pad constantly.  Drinking tons of water.  I got cranberry tablets, but then found out I shouldn’t overdo cranberry or cherry type juices or supplements due to my blood clotting disorder and taking bloodthinners…so, yea.  Add to the joy of me, since I do take narcotics, I am clogged up…haven’t gone in 2 weeks now…belly feels like knives are traveling around in there…all that scar tissue.  I’m taking massive quantities of Mirilax and Lactulose, with zero results so far.  Adds to the fun.

I’m feeling pretty much alone.  I have a supportive family, thank God…and some good friends…but I FEEL alone.  Thank goodness for my online friends, who also live with the same problem of pain day in and day out..they help me more than they know.  Just having a connection with someone who REALLY knows what it’s like to live life like this, helps me tolerate it a little more.  I wish they lived closer, so we could chillax together and commiserate! 😉

Every single movement brings pain in one part of my body or another.  It’s really mind boggeling if you think about it.  Move your arm…did you cringe?  Bend over…did you burst into tears?  Raise your arms to shampoo your hair… did you wince?  Take a deep breath…did you stop short in pain?  All of that and worse happens to me every time I move.  It’s a really bizarro way to live your life.

I am young.  I want to have a normal life.  I want to be physical.  I want to exercise.  To shop.  To swim.  To just BE….without all the challenges of doing it all with excruciating pain.  I hate swallowing a tub of pills everyday.  I hate the brain fog that comes with it.  I hate the negative emotions swirling in my head.  I hate hating the man that did this to me. I hate that I can not totally forgive him for making my life a living hell.

So, yea…alone.  That’s how I feel.  Even with family and friends.  I am ALONE with my pain.  MY experience with pain.  My emotional connection with the pain.  My way of dealing with the pain.  Some days I can be positive.  Some days I just can’t do it.  I can’t fake it.  I have to let it out.  I have to be grouchy and sick.  I have to be selfish and just take care of my needs for a period of time…then I can get a second wind, and be there for everyone else.  During those “down times” they just have to struggle along without my services…lol.  Sometimes I feel they would all be better off if I just was gone in some way.  I am sure it sucks to have a wife and mother who is ill.

Those of us who know pain on a real deep and personal level, are alone to a large extent…even if we were all in one room together, we each live with the pain differently.  We each feel the pain differently, emotionally and physically.  Some are stronger than others physically, some emotionally.  Some are stoic, some wear it on their sleeve…some fall in between.

Life is hard for everyone to some degree.  We all have our issues, our problems…I think maybe I “FEEL” other peoples problems more than I need to…I tend to make their problems my own in some ways.  I need to stop that, for my own preservation…stress does of course increase the bodys pain perception…stress can destroy your health.  Therefore, somedays…..being ALONE…is just what you need to be.

My prayer for today is for all my friends who are living with pain…to have some less painful days…whether alone or in a crowded house.

Thanks to all the kind readers who visit my little blog here…usually just me blatthering on about poor pitiful me…but better to put it here, then to allow it to fester in my head.

xoxoxo

Should I just give up?

Laying here in bed….in my usual position, propped up on pillows, on a heating pad.  TV on Hallmark channel, although I’m not really watching it.  Computer on lap.  House phone and cell phone within reach.  Bottle of water and pills on bedside table, several books/magazines  next to me.  Pain levels are thru the roof of course, as they have steadily been as of late.  The plethora of pain meds I take routinely … not doin their job.

Have a raging UTI with possible right kidney involvment just for fun.  Waiting out to go to the doc til Monday…but I am drinkin lots of water and cranberry juice, taking AZO and leftover pyridium. 

Wondering if I should just give up.  Not on life completely per say.  But give up trying to be NORMAL.  Trying to behave as if I have no health issues, when I most definitely do.  Give up trying to please everyone, when I am only failing repeatedly.  Give up trying to do anything resembling worth while when I can’t seem to.  Give up trying to fight all the damn health problems I have…the list just keeps growing.  Give up trying to keep going to doctors and keep taking pills, it’s all just costing us money we don’t have.  Give up trying to look decent, when its a fail.  Give up wishing the past could’ve been different, cuz it can’t.  Give up trying to be the best mom, cuz there ain’t no such thing.  Give up on trying to keep dreams alive.  Give up on thinking I’m here for a purpose.  Give up on trying to figure out my phone/internet bills, cuz Verizon is obviously trying to drive ME (yes, just me) completely insane with their billing practices.  Just give up. 

I will just stop showering.  Lay here in bed.  Eat like a depraved elephant.  Have people wait on me.  And wait for death to come and take me to a place where there is no illness, no pain, no hate, no fear, no misery, no anger, no spite, no stupidity, no envy, no competition, no bad people….just take me away.  I’m tired of it all.  Sick and damn tired of it ALL.

No one needs to freak out.  This is not some sordid suicide letter of any sorts.  This is me purging my mind because I am laying here pissed off as hell at the world.  I am supposed to be trying to get ready…we are supposed to be going out to dinner with friends tonite.  So after I am done crying, I will get the Visine, and go to work with the makeup to cover my blotchy face.  Find some clothes and TRY to look human and force myself to go out and pretend to be normal for a few hours.  I WANT to go out.  I WANT to see my friends.  I WANT to eat a great meal.  I WANT to be normal.  But the best I can hope for is just getting through the night.

So…see there, I guess I’m not giving up.  Yet.  Not sure if I will actually make it out tonite yet or not.  At this moment…it seems doubtful…but who knows…I will atleast get dressed, take my drugs…then when 6:30pm rolls around, my poor husband will then know if his disabled and useless wife will be able to accompany him on this Saturday night out….or not.  He should’ve run for the hills long ago.

Hope the rest of you are having a better weekend than I am.  Sorry to be a downer….but somedays…..it’s hard to pretend.

No inspiring quote today….not feelin it.

xo