Tag Archive | ddd

When Do I Wake Up?

Nov9

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

Feelings

Feb9

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!

Bad days

Feb27

It’s one of those “bad days” for me.  Sitting here at midnite…crying.  Having my own personal pity party.  Doesn’t happen often, but when it does, I go all out!  Sick of damn pain.  Sick of this freaking binder that cuts me in half.  Sick of wishing I was like a normal person.  Sick of wishing I could do all I want to do and accomplish everything I would if I wasn’t encased in a piece of crap body.

Have strep throat…and a headcold.  No big deal.  Just when you combine it with my adhesions/scar tissue, intestinal issues, DDD, Osteoarthritis, Fibro, APS, Lupus and whatever other illness ya wanna throw on my plate, it feels like just a tad too much.  Then add to all that worrying about every person I love, to an excessive extent…not being able to keep everyone safe and happy…and I think I’m on the fast track to insanity.

My guts hurt too damn much tonight…I can’t get my bedspread out of the washer.  That makes me angry.  But I know being angry at my situation doesn’t help anything…but it doesn’t stop it from happening…somedays.  I am almost to the point where I will have to give up more solid type foods…it’s just not worth the tummy troubles…or the pain as it goes thru the scar tissue.

I wish I could blink and be healthy and normal, and that my family would all be healthy and safe forever.  When you’re young, you don’t think about your health…you think you’re invincible…but you are sooo not!  In the blink of an eye, you can be sick or disabled.  I wish I could get kids and young people to learn that early…to try to eat well and exercise and sleep well and to learn good stress relieving techniques.  They could live a very long and healthy, happy life!

That’s another thing…when you’re old…no one listens to you anyway!  lol…

My throat is so swollen shut tonight I can’t speak…guess the family won’t mind that too much, eh?  Can’t ask them to do a million things… 😉  The only one who loves me tonight is my puppy Daisy!  She has been cuddled with me on the bed all evening, kissing my face and looking at me like I was the most amazing thing she has ever seen!  That is why I love dogs so darn much!  They always love you, they are always super excited to be with you and they really like to make you happy!

Add to the crappy night, there is nothing on tv.  My head hurts too bad to read.  I don’t even feel like doing this…but I wanted to get my crybaby crap outta my head so I can hopefully sleep tonight!  On nights like this, when I am in so much physical pain…I often say to myself, “It couldn’t get much worse than this” … But in reality, oh yes it could…emotional pain is way worse than physical pain…and put them together and it’s almost insurmountable.

Well, gonna go blow my nose…drink some NyQuil…maybe some hot tea…then who knows what wonderful and exciting pain adventures I will be off to!

Thanks for being around!

Pray for strength and peace.