The Wall

  The Chronic Pain Wall. What we learn to put up when we feel the people we know have heard it enough. First stop at this wall......"I'M FINE". What we learn to say to make YOU feel better. It hurts you to know I am in pain.....REALLY....you think you know pain....I'm laughing inside.  You have NOOOOOO idea. I love ya...but you don't get it! I will let you in on a lot of things WE never tell anyone. 18 yrs and counting...in pain. This is the stuff I only write down and usually throw away. Writing keeps me sane. I think. You would have to ask my family about that one.

  I am so frustrated right this minute. Yes, it's been building, but this is getting to the point of screaming now. I have tried to explain to the doctor and let one kid know just how bad it is right now. I'm not getting my point through. The kid I understand. I have always been hiding as much of it as possible, hard to change. I still sequester myself when it is at it's worst. 

   I have tried not to hide anything with the doctor. Easier said than done. When I say I'm MISERABLE....I do mean it. I explained. I have not left my house except to come to the doctor. No matter where I try to sit, lay, or in between....IT HURTS! A LOT! I only go to sleep when I am totally exhausted. I can't go to sleep before then. It hurts too much. 

  I hate prednisone. I take it. Because the doctor said to. It did help for a day or so. Then it's like it came back with a vengeance! This problem is not my normal chronic pain stuff. I KNOW all that stuff. This is something else wrong. What does the dr go to first? Chronic pain. ASSUMING!! This is not good. The only reason I have not been to the ER is sitting in the waiting room. I hate that part! I'm almost to the point of having to go. Not much of a choice anymore. It put me on the floor again today. This is really ticking me off. The floor part is bad enough but now it's affecting my right leg, my right back, and the pain is making me soooo nauseous I can't stand it. I'm tired of "try this for a week or two, then come back". 

  

911 or not?

  I have hit that point, which fortunately doesn't come often, of 1 step from dialing 911. I am still in the stage of talking myself into it not being that bad. This is scaring me though. Put aside all my "normal" chronic pain stuff, this has taken over. I am shaking, my head feels like it is going to explode, my stomach has swollen to a ridiculous amount, I feel like my ribs are going to pop out from the pressure inside pushing out. I can hardly stand the pain running from my back down my right leg and foot from the pressure against the inside of my back.

  According to the doctor I broke down and saw, because this had gotten to the point I couldn't stand it anymore......she "doesn't feel anything wrong" when palpating my stomach. sheeeee doesn't FEEL anything! NO shit!!!! I called this dr's office yesterday. Of course I just got to talk to a receptionist. Told her I had to speak with the dr. The pain had become immense and had already struck a blow so hard it put me on the floor with sudden sharp unrelenting pain. No nurse or dr bothered to call back. And some want to know why I don't "want" to go to a dr. 

  This is now feeling like it is putting pressure on my lungs, causing pain between my shoulder blades, while still pushing up and out from under my ribs as it also pushes on my spine. I even feel pressure on the right side of my throat, only the right side, and very very nauseous. This actually got better on a few days of the prednisone, but those days I was "manic". I have never had that reaction to prednisone. And I have taken it many times over the years. Since it abated a little, it has come back with a vengeance and worse. I thought it was horrible before....It is now. On the pain scale I give it a 9.5, on the scary scale I give it a 10.

  I dread the ER. Once they hear or read, they have me on record from migraine visits, chronic pain...the attitude changes! I hate that! Assumptions everywhere. So many are just totally misinformed assumptions based on nothing scientific or real about chronic pain patients. But..I hate that LOOK. You know the one. Where you know behind those eyes they are thinking holy shit...what do I do..can I prescribe anything.. I should send this person to their "personal" physician. Yeah that's it...pawn if off on the family physician, we'll just make sure you aren't going to die in the next 12 hours. Then you feel yourself being "pushed" out the door as far away from them as possible. So why wouldn't I just luvvvv to go the the hospital?

  I think I am having a small panic attack right now. It's that fight you have in your own mind about just how bad it all is. Trying to talk yourself into it not being as bad and you are thinking it is. But also thinking maybe I should write a note to one of my kids (grown up) to make sure I'm alive when they get up. I know that is so dramatic...but somewhere in my head is a little section saying that is a good idea. 

  I think it is telling that something is definitely wrong when you have been fighting something for so long and no relief or reason for it, that you have had some crazy ideas flash through your mind. Like if I fell hard enough right on my stomach where the swelling is the worst...would it possibly force something to do anything that would make this different? Yeah...I know that is crazy. I knew that the moment I thought it. Same thing when the one about accidentally getting cut there might make them look and find something.Although...I did have gall bladder surgery in December...that dr did tell me there was a huge amount of inflammation where I was complaining about. I asked him, well what was causing this. His answer, honest to god was, "I dunno" and he left the room! As he left I did state "that was helpful"! So the cutting thing....bad idea. Now I'm not sure I actually needed my gall bladder out....great..I can get something taken out that wasn't hurting, but can't get anything figured out about what IS hurting! 

  I'm about ready to get the hammer and knock myself out for a little while. I am so miserable right now and I could really use some sleep. So somebody wish me luck...somewhere....and I will try to get a little sleep.

PS.....Those thoughts only come when the pain has become unbearable and I hit the scary stage with a panic attack.  A lot of thoughts come then. It is when everything hits you. What you can't do, what you haven't done, what you would like to do. The whole WHY ME pity party time. Granted we all need that time once in a while just to let it go but I hate anyone knowing about it! (at least I did, can't do this and say that)

It's gonna be one of THOSE days

  Chronic Pain. Such a short name for something so all encompassing. Horrible, everlasting, debilitating, depressing, unimaginable, unexplainable, etc, etc, etc! 

  The original pain is enough....but that's not all. That pain causes other pain. Pain of loss in a lot of ways. Can cause...Loss of income. Loss of freedom. Loss of ability.Loss of ambition. Loss of some family. Loss of friends. Loss of reasons to get up and get moving.....and so on. Soooo many things. 

  There is still a little bit of good now and then. This also can be depressing. When you get a glimpse of good...you want more of it. Problem is, it usually doesn't come. This suks! I wish and I hope to feel better. I get a glimpse of it. I feel amazing compared to normal for a tiny bit of time and it is AMAZING! Then.....I get woken up again...with the pain...I've slept maybe 3 hours. REALITY! I knew it was too good. 

  That glimpse...reminded me of just how much I have and am missing. Sometimes it is easier, in a way, to stay stuck in the dark house with nothing but my TV and computer. No visitors, no calls, feels like no one cares at all. Then you get that look that shows you some do still care, they just have noooo idea how to help you. It is so hard to tell them anything to do though. I want to, I have no idea what to tell them actually. Besides..I have spent years cultivating the talent of NOT showing how I feel. Not letting anyone know just how bad I am doing. Not crying, not letting myself get physically sick. 

  This causes more problems. I realize I have not really cried in years. The migraines and other pain is soooo overwhelming my body wants to purge itself...get it out. I can't. When you suffer from horrible migraines, you learn if you cry it gets worse, if you throw up..it gets worse. I have trained myself not to let this happen. Now I have a problem doing either no matter how bad I need to. It does surprise me that I can stop a bodily function with my mind. Why can't I stop the pain?!? 

  Don't get me wrong...I have tried. Mind over matter and all that. I have tried pretty much everything over the years. I have been put through some horrendous procedures that were supposed to "help" me. I still can't believe I subjected myself to some of them. It is amazing the more pain you will put yourself through in order to lessen another pain. There are some...who will take advantage of this. Drs that want to "try" something they may believe in to see IF it works like they think. This may be necessary....I don't like it! Not when I'm the guinea pig.

  I have had horrible procedures done and gone straight back to work. (This is when I had a job that "understood" all my problems. I was lucky...best friend ran the place.) I have no idea how I drove back to work. I have no idea how I didn't fall out flat when I got there. I don't think my brain was even there at the time. This falls into that determination territory. The determination we have to keep going no matter how bad it gets. Sometimes this just means....keep living. If you have chronic pain and you keep living...period...you have determination! Not that I would ever kill myself...but have thought about it being easier if I was killed in an accident or something. I don't think you can tell me anyone with chronic pain had never thought of that. I believe it has to cross the mind of everyone with chronic pain of any kind.

  I am sitting here writing this and trying to figure out how to get ANY of this across to a doctor in 10 mins. IMPOSSIBLE! I feel like I'm going to have a panic attack worrying about not being able to get it across. i wonder if I could get a dr to read my blog? Would it do any good? Or.....might I be stuck in-patient for something? I'm not crazy. I just run around in my pajamas, wanting someone to hurt as much as me for a minute. I don't want anyone to feel sorry for me....just for them to get it! It is so frustrating!

Let's call this the Prednisone Crash!

The first 5 days of the prednisone countdown I was up 3 of them. It helped with some swelling and caused others. The wonderful "pain medication" the dr gave me....total crap(trammadol), I had forgotten my generic to brand reference book when going to the dr's office..or I could have told her Ultram doesn't do as much as aspirin for me.

I had energy and truly felt better...I felt better enough to realize just how bad it had gotten. Probably a little depressed that I had let it get so bad while trying to tell myself it wasn't that bad. I hate that. Do it a lot it seems. Try to talk myself into believing it's not as bad as I think it is. I have back slid to the point of not going out of my house, not seeing friends or family, not driving, not going to a dr, eating maybe once a day. But it's not as bad as I think it is!!! 

This rambling also seems to be part of the prednisone let down for me. I had a flash of "better" but it's gone. I used to wish for just 1 hour pain free, not unconscious, to remember what it felt like. I could still use that, but now I want one day of Less pain to remember what it feels like to feel a little better!! I'm adjusting, but am I adjusting too far? 

 Topping off my day, I called the dr's office to have the dr call me back.  She did NOT! Neither did the nurse. I DON'T CALL UNLESS IT IS HORRIBLE!! Maybe I should be someone who calls all the time. I can bug someone every single day...especially if I know it bothers them...sometimes you want to make somebody feel as bad as you do. Barring that...make them uncomfortable! I have never actually done that but I am getting sooooo close! 

  I was spoiled by a dr(he retired over a yr ago) who actually CARED! What a concept! Lord help me find another!

A trip to the Dr.

  I sit perusing the yellow pages, letting my fingers do the walking (my legs sure a hell don't want to). Dreading another conversion with another Drs office that won't know what to do with me.

  I'm sorry. I am, unfortunately, not one of the many people who come in 1x a yr with only 1 problem. EXCUSE ME! i wish i had only 1 problem, and NO you can't FIX me but how about helping! Physician DO NO HARM, Ignoring me, harms me, not listening to me, harms me, not helping.....HARMS ME!

  Donning PJ pants (w/cows and clouds), long sleeve T-shirt from the beach (worn and torn), converse Tennis shoes (stained and broken laces), ugly socks, hair not dyed, gray sticking out from under the old ball cap (sweat stained yrs ago), no make-up (lost the tube anyway). OK.....this is all visual aide for the Dr i am going to see. Point being, I feel horrible!

Next time I will wear the old, humongous robe and fuzzy slippers. Back in search of!

Shingles....more like shackles

  Let's talk shingles...Shingles Info, they are a horrible thing, especially when you are in the 2% of the people that have pain for over a year from this. I think that my body is now programmed for chronic EVERYTHING! Plus anything that is odd or strange to have happen....it WILL happen to me. SHIZNET!!! This sucks. I am not this person...at least I didn't think I was.

  So.....shingles...OMG! This hurts....a LOT! How can I adequately explain this? Well I probably can't but I'll give it a try. You see nothing wrong on the outside of your body. No clue that something is going on. Inside your body, sometimes if feels like something is on fire. The pain is excruciating. Nerve endings are going nuts, and I have learned over the years there is NOTHING like nerve pain!! But you don't "LOOK LIKE" you would be hurting! ARRRGGGHHHHH I have heard that soooo many times I want to scream! Even the doctor...they don't "see" anything wrong, they don't "feel" anything wrong when they poke on you. (they poke and it hurts so much your screaming in your head but out loud you just make a pain sound) and by the way...the dr doesn't think it's THAT bad.

  Should I cry? Pitch a fit? Go to the appt. in the pj's I have lived in the last 6 months? How do I get across to the dr that this is HORRIBLE? I have worked a lot of years NOT to show how bad it is...nobody wants to see that all the time. Bad enough I have to handle it all the time. But I digress.

  Trying to convey to 3 different doctors I have been to, the all encompassing nature of this pain! The amount of inflammation that has come along with it which has made me MISERABLE! When I say "miserable" this means I have stopped doing.....EVERYTHING. Not that it stops me from "some" things. I mean ALL things! This is NOT an exaggeration. If I say it I mean it. This particular pain has kept me awake for days on end, put me on the floor with sharpness that felt like part of my insides were being ripped out, made sitting in the seat of my car impossible. I got out of breath, at times, just walking down the hallway. Just getting up sometimes felt impossible but I had to move, couldn't stay in one position for any length of time. How do I correctly convey this to the dr so that she really understands it?? I think it is impossible when they aren't really listening to everything you are saying anyway. "THEY" already have an idea of what they THINK is wrong no matter what you say.  This is why this has gone on for a year now! NOT LISTENING!! I could have had the antibiotics to help this a longgggg time ago. I probably would have if this dr hadn't refused to accept my medical records, which were too thick, she just wanted to "start fresh"! By the way, this was a warning sign I brushed off.

  In my defense, the reason I ignored that was it took everything I had to get to that dr's appt that day....and I really felt too horrible to make another appt with another dr and go again! So I stayed by default. Which was my fault! Also, my mistake! Yeah I have made a LOT of those over the years.

Self Diagnosing AGAIN...as usual

  Why do I always end up telling THEM what is wrong and the medicine I need before they can figure it out?!?  I feel stupid...this has gone on too long and I just realized what is causing this particular problem! Seems so simple now.

  Is there anyone who will talk to me about shingle's....especially the INTERNAL shingles! OMG it is painful! This has taken me off my feet and put me on the floor too many times! I mean this has caused some scary pain. The kind you wonder if you should call 911, not kidding, that bad! 

  Being clear....I have had horrible swelling in my abdomen...where the measurement of my stomach will change by more that 5 inches in an hour or so. Feel like 12 months pregnant and something might come out already! Yes....I measured my abdomen because it was happening every day and I thought I was crazy to think I had swollen that much in such a short period of time. I HAD! Dr. did not really believe that...standard.

  I had surgery in December to remove my gall bladder. Told the surgeon of the OTHER pain. Came out of surgery gall bladder problem gone and he said "there was a LOT of INFLAMMATION in there" I asked what might it be? I was told " I DON'T KNOW", I said "well that helps me a lot" and this was the end of the conversation where he was concerned!

  My family physician has seen me 6 times now, I have had blood tests, x-rays, and sent to other dr's. They came up with other things....but nobody actually got what it IS. So now I wait til the appt on Thursday and tell her I need the anti-biotic for shingles. ANDDDD I have had it....I want something for pain that will last me just a week. I am at the end of the rope! You know that place when you just can't stand it anymore...you'll would submit to pretty much anything to make it go away even a little!

 

I choose the Cow Pants!

  I want to think that the people I love actually understand what I go through. The I am reminded they really don't get all of it. Who could really....unless you are actually living with it yourself? I have to say I am improving in the depression department. Slowly but getting there. Two of my boys called me one night last week...I was actually asleep (about 5 minutes when the  phone rang). I had gone through an endoscopy with esophagus stretching and a colonoscopy with biopsy's in both area's. The boys actually wanted me to come out and hang with them for a little bit, at a bar. I hardly ever drink anymore...maybe a couple times a year. 

  I was feeling pretty crappy but really wanted to spend time with my sons...(mine are 29,30, & 31). I hadn't spent very much time with any of them over the past year, but especially with my oldest. I still couldn't stand my clothes, they hurt! Told the kids I wasn't sure about this and how I felt. My oldest says wear your PJ's....I don't care and they won't care here either.  (neighborhood bar lol) So I pick up the nice, cotton, RED & white, COW PANTS! Has to be a hundred cows on these things at least!! Find a great big, long sleeve,T-shirt. Boy do I look rough! Grab the hat...hair not dyed lately and don't want to fix it at all. Get the tennis shoes....damn...feet are swollen again!(STILL)  I am still thinking I really should put some jeans on but the thought of how much pain that would cause made me stop that. I wanted to spend time with my boys...not cry at them. 

  I don't think they got it....that I would actually show up in the PJ's lol!! Maybe they did...they are used to me by now! lol  I felt bad but not miserable...slightly out of place for the first minute then didn't care. Move over MOO-MOO I have the COWS!!

Manic.....and it's not Monday yet.

  This is new. I am feeling MANIC or what I think manic is. I have been a hermit for so long and coming out of it feels like I'm a little nutzzzz right now. I am not moving right now yet I feel like something inside of me is going about 100 mph! I think I'm actually "bopping" around.....this is weird! Thinking the prednisone is a stronger mg than I thought it was. OK...I checked and it is 10mg. Wow it's really got me hyper! 

  Why is everything soooo amplified? I mean I expect it to a degree but this is over the top. Boy is it going to be a huge change to stop taking this in a couple of days. Up--Down--Up--Down. I'm tired! 

  I am feeling like it was a really bad idea to avoid any doctors at all since mine retired over a year ago. I knew that it would be starting over though and it is. I have my records...it's about 5 inches thick. I asked the new Dr. did she want me to bring those in....she said no. The more I think about it the more that bothers me. I know that just about every  Dr I have been to wants to "start from their beginning"! What a pain! I have had so many procedures, been through pain clinics in-patient and out, I have had shots in my HEAD for the migraines! I have had all kinds injections for a number of reasons. MRI's, CT's, X-rays, and I really don't want to have to do them again just because you don't want to read!!!! This would be a total waste of my money to say the least! Why is it soooo easy for a Dr. to waste your money even when you make it clear you don't always have enough to get even basic medicine! It's like they don't really believe you! They don't...just like they don't really listen and believe what you tell them about what is going on with you! 

  This is soooo strange right now. I feel like I am trying to catch up to myself. My brain has me way out ahead of my body and I can't catch up!! I think I really need to go to bed but NO WAY I can sleep right now.

Hiding

I'm Sensitive.............BACK OFF

  A period of shut down. Drudging through a time with no ambition to get up. don't care if you turn a light on. Sick of TV but watching something...anything...anyway. 300 plus channels and nothing seems to be on. Started feeling too bad to do anything. Then without realizing it you stop feeling....about anything. it doesn't matter if the dust is an inch thick...don't turn the lights on and you don't see it. Only run the dishwasher once a week, if that, because you aren't eating anyway. Saves money on bills but eventually being a hermit goes too far. Nothing bothers me...but I don't care about anything either. if you're lucky you start to climb out of it. Not sure why or when it will happen...it just hopefully does. 

  When you do seem to be starting to care again...the good and the bad comes. AGGRAVATION!! I am feeling a lot of that! Why would somebody spill a little something in the fridge and not clean it up? Aggravating. I'm awake and feel like crap...somebody else is still asleep...it's after noon...how much noise can I make to wake them up? Aggravating. My head hurts...your talking..I'm not speaking...why are you? Aggravating. That car stopped in front of my house...WHY? Aggravating. That person just walked through my yard. Aggravating. Why are you breathing so loud?!?!?!?! OK...way too far! LOL but true.

  Every little thing I haven't cared about is driving me crazy. Stuff that really should NOT bother me is bothering me. OK this is going too far. You shut some things off then everything follows and you don't care about anything. You start to turn some of those feelings back on and stuff comes back with a vengeance! Payback! Teach you to turn off. This will drive your loved ones CRAZZZYYYY!!! There has to be a happy medium in there somewhere but how long will it take to find?

SORRY  SORRY  SORRY  SORRY  SORRY  SORRY  SORRY  SORRY  SORRY  SORRY

I think I'll have a T-shirt made that is jut covered with the word sorry. Oh..and sweatpants that say "I'm Overreacting" on a minute to minute basis!

  You pay for turning off feelings...they get you back in a Big way! When they start taking hold again they are sensitive....VERY SENSITIVE! There is the shirt for me...

                I'm Sensitive...BACK OFF!

I can't wait to find the middle ground on the volume of my feeling's again. From 0 to 100 and looking for the middle!

Tramadol...do you have an opinion?

  So I have been given Tramadol 50mg. Instructions 2 pills every 8 hours for pain. The first medicine I have gotten in 1 1/2 yrs. Oh wait...except for my surgery. I did have some medicine that had me feeling like staying up and cleaning and doing something fun for a couple of days. Back to the Tramadol...DOES THIS WORK FOR ANYBODY?? I think Motrin does more. Except, since I started taking it my migraines are more often and worse. So that's the end of that huge bottle of Tramadol I bought. The pharmacist gave me the script, told me the warning on the label, then said "but for most people it doesn't do anything"! Soooo...doctor's have no clue about this?? Don't you think the dr's have heard from people they have prescribed it to that it doesn't work?! Or is it that they just don't listen to their patients, instead believing the pamphlet that came with the medicine or what the sales rep said. Forget that the patients tell you it does NOTHING! Not worth spend $2 on much less what you have to pay! I am SICK of wasting money on crap that doesn't help at all!!!!!!!!!!!!

Holy Crap my Hair Hurts!!

    I had been wrestling with my hair for weeks. For some reason I can't stand my hair touching my neck or anywhere. I am constantly pulling it away from my head and holding it there. I let it grow out some so that I could get it into a pony-tail...didn't work. I feel like I can feel my hair all the way to the ends and it's driving me crazy!!

  At this point I have been driven nutzz by my hair for months now. A lot of things are going on. I don't want to get dressed. I haven't dyed my hair. (OMG) My good old recliner that I couldn't sleep without...I can't stand it anymore. I can't stay in one place for any period of time. In the chair, to the bed, to the couch, try the floor, sit in kitchen chair, stand up and lean on chair, get pssssssd sit back in recliner! Frustration level off the charts now. Weeks of this really do make you think you will loose your mind.

  When it is dark and quiet, 4am and I can't sleep, I keep thinking OK tomorrow I will get dressed and wash my car or heck...just walk outside (I think I am vitamin D deficient right now).  I think of a hundred things I would like to do.....tomorrow. I finally get a little sleep. I get up, get my coffee, go back to the $#@$ recliner and don't do a thing. I am disgusted but it hurts so much I just can't make myself do anything. 

  I am now extremely fed up with my hair. This is wrong....hair doesn't hurt....how is this possible?? I have been fiddling with this hair all day. I can't stand it touching my neck in particular. About 4 am I have totally had it! I get the clippers I used to trim my boys hair, get the #8 attachment..thinking that won't be too short. Stand in the middle of the kitchen (no carpet there), no mirror, and just start cutting it all off! I am looking at the floor and all the hair thinking this is going shorter than I thought it would. I should go look in the mirror and make sure I don't go wayyyyy too short. Naaaahhh, it's not touching anywhere and I feel less nutz, keep going! I buzz until I don't hear it clipping much anymore....did my whole head. WOW it does feel better! OK, I have to go look in the mirror now. O..M..G!!! Of all the ways I have worn my hair in +40 years THIS has to be the WORST! But......it feels good! My hair is not touching anywhere...wow...maybe I won't go crazy. 

  Now if I could just fix the problem of not being able to stand cloths touching me! Can't stand my pants, actually I can't even stand underwear...even those oldie bloomers I found, I can't make myself keep them on. I have 2 pair of PJ pants that I will wear. a pair of very soft ones, that are loose as can be, and my "cow pants" lovely pictures of cows all over. Appropriate... since I feel like a heifer these days. Then there are the huge, loose, falling apart, long sleeve T's to wear with it. Oh and the fluffy robe I have to have on until the hot flashes hit. 

  So there is another reason I am not going out of my house. I hate what I am doing...or not doing. I don't want to be this way but I feel so horrible I really don't care. I want to care. I am getting closer to caring again. The last year and a half I got worse than I ever have been. It is soooo hard to figure out how to climb out of that. Still not sure what I did or didn't do but seem to be coming out of it. 

                   This brings me to Prednisone day 5. 

  Rough night last night. I got scared. My heart felt like it was fluttering funny. I got a painnnnnn, Top of my right lung...I got dizzy and lightheaded, felt like I was going to pass out. First thought was my heart....wrong arm to have pain in for that. Took a minute to think about my lung. I have had a totally collapsed left lung with chest tube and 20+ partial lung collapses since on my right side. I think I totally avoid that thought because the chest tube scares me more than anything else in this world. 

  The inflammation that the prednisone is calming down turns out to be EVERYWHERE! My hair driving me crazy.....inflammation in my neck. Clothes driving me nutz.....inflammation in my chest wall, in my a back. I put my shoes on and didn't want to take them off immediately! Inflammation in my ankles! Shirt not bugging the crap out of me....inflammation in my shoulder's. 

  I had 2 high energy days on the prednisone. Today not so much. Woke up with a migraine.....FUN FUN FUN! Had those thoughts this morning that maybe I could let the da@# headache outta my head! One part of me thinks that is really stupid...but another part of me thinks it is possible! It might work! For a chance that it MIGHT work I have to really consider the best way to do it.

  

Post Injury 18 years 2 months 11 days

  God it has been a lonnngggg road! That LONG and WINDING road! One of those back-roads... Gravel, around a mountain,(only goes UP lol). Lot's of pot holes....well more like large ditches to cross. Wading through, slowly, a lot of things.

  So many blood tests, x-rays, MRI's, Cat Scans, Injections in my back..shoulders..neck...and even in my skull!!  And so on and so on. Many doctor's who don't want to see you anymore because they can't fix you! Others that decide if they have nothing they can fix there must be NOTHING wrong with you! (That is one of those wanna SLAP'EM moments!)

  Have you ever had at least one moment with a doctor when you wanted to hurt them VERY badly, give them pain, and try to show them just how bad it feels ALL THE TIME for you?!?! OOOOOOooooo I have wanted to on many occasions!

  I have had nights that all I could think about was wanting someone else to hurt as much as I did at the time. You know, those pity party nights. Sitting alone, crying, mad, depressed, upset, needing a hug from someone you love! I went today to my best friends so I could get that hug from the person that is not related to me but loves me unconditionally!! Until today I felt too bad to leave my house to do that or anything. God forbid anyone come here!

  18 yrs 2 months 11 days and I still get asked is it all better now?! BLESS THEIR HEARTS! I truly believe that NO ONE can understand unless they actually deal with it themselves! It's impossible! Not to say that some can't empathize.. someone that loves you unconditionally, asks how you are and do NOT accept the "FINE" answer. The ones that hear you say you don't feel like it but know you haven't done anything in too long and come to get you and make you go anyway! You work out in your head just how much your going to have to pay for what you are about to do IN PAIN! Weigh the good against the bad. Go for it! 1 good afternoon for 2 or 3 really bad days.....yeah it's worth it!

  There is something else that I wish more people could understand. There are some things you just can never do, some you can't do the majority of the time, some things you can do one in a while...when your really determined to do it because you are sick of NOT doing it. You KNOW your going to pay! Somebodyyyyy sees you do it and assumes you can do that all the time! ! ! NOOOOO ! ! ! There is constantly a scale in your head trying to figure out how to balance the good with the pain.

  Before this past year and 1/2 of hell.... I would plan to do something. Let's say on Saturday with a friend. So starting Wed or Thur I would just quit....everything. (Park in the recliner with tea and a remote) Rest up BEFORE I was going to push things too far and I knew it. Go do the thing I really wanted to do. Then PAY!! OMG PAY!! Depending on what I did I could be paying for 2 days or 2 weeks. But you have to decide is it worth it? Sometimes I wonder what I was thinking...price was too high!

  All these years later I know that my tolerance for pain is very high, I also know my tolerance for medication is very high also. If I listed all the medications and treatments over the years I could probably fill one page with that alone. I also know that sometimes...it all gets to me and I just can't take it anymore.... that is the time I have the pity party with myself. It's just you take all the pain for sooooo long...I hit a wall and just can't handle it for a little while. I get past it though..sometimes slowly some faster than others.

  There are so many things that I have NEVER said to anyone ever! I hope that someone can read this blog and maybe find something that might help them understand just a tiny bit of what someone they know is going through. I also know some of this is just a mess of depression, aggravation, and just wanting to get some things out!

  

Prednisone Day 4

  I have now been up for 24 hours. The energy is waning!! I am dizzy, feel like my heart is not beating right all the time, light-headed, and feel like I can't get a breath good of and on. I have been up way too long! Looked up the side affects of the prednisone. I have the swollen ankles and feet, worse now than they were before the prednisone. (didn't think that was possible) Live and learn. 

  Other than those things....I actually feel better! I wanted to run see my friend today. First time in months... uhh make that over a year. The energy was still pretty good til I hit about the 20 hour mark of being up. For the first time in over a year instead of just having thoughts of what I would like to do (but don't do any of them) I actually did some of them. I'm not 100% but a LOT better than I have been.
  Amazing what changing of the pain level from 7 & 8 all the time to 3-4 most of then day, can do for you! All the difference in the world. I feel like I got a piece of life back!