Had to go to this appointment I canceled twice this week and I'm not sure the pain I'm now is was ever worth the effort. Spent most of the day on the phone playing phone tag with Dr. B's office with Kim stating I wanted a Mri and then Dr. B setting up the orders but I never got the call back for setting up the appointment. Meanwhile my steroid is half way to tapering off and yay its the weekend. The arm and chest pain are returning and after getting in and out of the car the spine pain is really sharp and unbearable now. I'm paste angry and frustrated at my whole situation.
I feel like I'm just sort of on this short term waiting list for terrible news and if its bad I'm not sure I can handle any of it anymore and if they say surgery again I just feel like giving up. I can't go thru the pain of another fusion and all that goes with it and I cannot function at all like this now. I want to run away and I can't when it just hurts even when I'm still and just try to breath.
Well being on the steroid has put me on edge and although there is some relief it's sort of a fools paradise because now I can feel other things in other areas and I know something is definitely is wrong. I still have this weird chest pain and now I can feel weird things when I move my arms in my low back or like if I twist at the waist and use my arms.
I awoke this morning with less pain in my chest and less pain in my left arm but I feel like I'm on a count down clock for something to snap or just go wrong leaving me screaming in pain.
When I was at the office I said " It took everything I had to come here today and tonight I will pay for it in ten fold in pain" and Dr. B was like "No you will have this and you will be ok" to which I started sort of falling apart and said "This is my arms how am I not supposed to be terrified" and I just get this look like "Oh don't worry it will be fine" Yeah...
Maybe if I was someone else and hadn't lived thru complete and utter hell for like 20 years I might buy that and believe it but I know this monster well and I know when he awakens under my skin he's out to get me and I'm on limited time.
When ever one went to bed I just cried thinking "What have I done to myself now? How did I get here again?" God my last back surgery they removed my old fusion and extended it and made it longer and put it back in. Then because my blood pressure fell so low I couldn't have pain medication post surgery until it went up.
It was sort of like surviving a plane crash and hoping you would just die in the 7 days you were in the hospital before they transferred me to the rehab center. That was a whole other nightmare given I couldn't even hold myself up to sit and could only lay on my left side. Hell I even diagnosed my own blood clot in my left leg and informed the Nurse about it given my Mom's history I knew all the things to look for. Or how about the day the two tech's tried to force me into that moving thing and I lost it on them and screamed at them and then somehow a hour later I got myself into bed and cried like a dying animal for a hour freaking out half of the staff begging people to just leave me alone.
Just because I live through nightmare after nightmare doesn't mean I wanna revisit the last two years I've struggled so hard through. Fuck...Just the idea of another back surgery and going through all of that again is enough to break me. I just can't do it again or the recovery.
After this summers surgery and going though that and the emotional issues afterward and this endless carousel ride I'm on with the coumadin clinic and the hematologist I'm sick of it all. I'm at one or the other every other week and have been saying for months now I just can't take it anymore and don't wanna show up. I keep saying I'm worn out and just cannot go through this anymore much less keep up with the bills.
I think every person has their breaking point and I think lately I'm just shattered like that damn glass bridge in China. I feel robbed of a life I mean when you spend 20 years in hospital after hospital and recovery after recovery you lose yourself and whoever you were ever suppose to be.
Sometimes I just wonder to myself what its like to have a set of car keys in your hand and a place to go. Sometimes I look back and try to remember how I used to walk or how I was before all this ate and ate at me until the girl I was, was so faded you could no longer pick up her outline in a picture.
Who was that girl and how did I lose her and become this haggard aged reflection of a woman I don't even know anymore when I look in a mirror. When I look at her now I just cry for her and the day to come.
What do you do when you feel like life threw you away? How do you start over when there's nothing to start over with? How do you have hope when every aspect of life is taken away?
I keep asking myself question as I'm trapped in my head this week being afraid to move or breath...
So Thursday came and went. They did ex-ray's started me on a steroid but I feel that's like a band-aid on a bad situation. I'm supposedly to take it and wait for 7 days and then call in and then we do a MRI. I sometimes wonder how they think a person like me functions or lives between appointments. After leaving last night I had to wait a hour in the car for my stupid script to get ready, I really hate Meijers pharmacy every time I get any thing there it's a problem. I was in the car far too long and it was horrible getting home and back into the house. Started the medication today but I still feel weird things all over my body and know something is just wrong.
I keep thinking how will I manage this? Like how will I take care of my pets or like shop or just do anything. My arms are like the only thing left of me that is well me. It's like life has taken just about everything for me can't it just leave me alone with what I have left?
I'm so tired of living in fear or in pain and honestly I can't go thru another back surgery like that last one. That was beyond horrible and its taken me all of the two years since to get this far and now this. Every time I stop and think or fear getting up I start crying.
I'm rather tired of crying as well. Well no matter I still want another MRI to know everything is still in place even though it doesn't feel like it at all.
I'm trying to find one good thing lately and just can't...
Using my arms is hard today I don't even try to dare comb out my hair or twist it into a bun. I was sitting here trying to sip water but I tipped my head too far back and had some scary pain thing happen in my chest so I'm just sitting here crying trying to get myself together. I was hoping to take a shower today but we shall see maybe this afternoon will be better. I am hoping Dr. B will do a mri and admit me into the hospital cause being like this is so scary and I don't know what to do with myself given I just cannot move at all and just trying to get to the bathroom is a absolute torture.
I keep thinking what have I done to myself now? Can they even fix me? My arms are like the only thing I have left to rely on and now this. I'm so scared as to what this means and I don't want anyone to know and I just can't stop crying fearing the worst. Even though I'm talking to no one here but my journal at least I can write out what I'm feeling and going through and it sorta helps me not feel so crazy in fear and pain...
Spent a long time crying today just over everything in general. I keep wanting time to pass faster and keep debating with myself of just going to the ER. If I can just get to Thursday I keep saying to myself, but then what? I know it's going to be bad news and I have no idea how I will even get dressed much less to this appointment and go in since I can't walk or function much. I got forms in the mail today to fill out to update my records but I'm not sure I can fill them out and when will I do when they send me home it's not like anyone's going to fix me that day. Everything I do has a weird side effect or reaction to the movement. Tomorrow I'll be alone for a few hours and it scares me to be alone but I can't exactly take everyone hostage with my issues.
This pain in my chest hurts worse laying down and it makes sleeping scary cause I fear what I will wake up to. I know something is really wrong with me and I know it something that has to be fixed on the inside and I just can't take being cut open again but whats my alternative? I cannot function like this and I can't stay this way.
I've been crying all day cause I can't do anything what-so-ever and what if I stay this way? I wouldn't be able to manage things alone and I wouldn't be able to care for my pets.
How did this happen to me again and how much loss can I take? This is my left arm what if they do something to me and it gets worse? I'm so tired of being scared all the time. How am I going to handle this when I'm already so beat down already?
It hurts to type or cry anymore tonight goodnight self...
Today's the first day I've been alone for a few hours. I'm kinda scared kinda not. One part of me is like just get up and move and see what happens and the other part of me is like we've done that before and horrible things happened. The house is a mess and I'm next door to useless to really do anything.
It's odd I have no pain in my legs but this band of pressure around my waist when I stand. I get this odd pain high in my back when using my arms or lean a bit forward. I'm like can Thursday just get here already because waiting for the days to pass are kinda torture like to live through.
I've really not been able to do one thing I wanted while everyone was on break and it kinda sucks. I opened the window to let the light in and I find myself angry seeing people go by and ding their normal thing. I sometimes think why have I been robbed of just having a normal?
I've grown sick of all of social media it's like you can't honestly tell people whats going on with you cause then you get some crying smiley face and some weird line about "your so brave!" Like how the hell does anyone know I'll be ok or if I'm really brave? Being brave isn't something you have a choice in, being brave is what they tell you you are if you're lucky enough to live through tragedy and are still standing.
Maybe I'm just jaded or just no longer care to hold back but this is the new me I guess.
Called and canceled all my other appointments and I see Dr. B on the 10th. Yay now if I can just make it six days without something bad happening to me. The arm thing is sort of better not so much like I got hit with a fast ball but it still hurts to like the bone when I lift if too much.
The center of my chest still hurts when I breath or chew and I have this weird low grade ache on the back of my neck like you slept on your hair or if your pillow was a turtle. AS for the rest of my hardware its hard to guess and I will only know after I get a MRI what exactly I have done to myself of if a disc higher up is involved and to me it seems like it is given this strange weird pain I have never felt before.
2019 for me is kinda starting off like a nightmare of sorts and I just lack all optimism. I mean what can I say that's positive when I'm constantly falling apart and am riddled with depression. I need to be seen at the Dr.'s but I know something is hugely wrong and I don't think I can handle it at all. I said over summer I just cannot handle one more bad thing happening to me and now this. I try to be strong through things but at this point I'm starting to crack at the edges.
Prior to my cancer scare and hysterectomy my other Dr. put mt on 2 different medications that really did a number on me with altering my behavior and mindset it was so of like forgetting everything all the time but at the same time kinda going a little nuts. On top of that I had weight gain so it was like being so out of control of myself simply for a pain medication that I simply took myself off of it. I mean I'd rather be miserable in pain then out of my mind with crazy side effects and shot term memory loss.
The past two years have been so crazy for me its like I was losing my mind on top of everything else and in the process I lost several friendships. I dunno whats worse losing friends or having people you consider close friends who just never really ask you whats wrong and just abandon you. I don't think I can ever forgive that for I've always tried to support people and care for them and any time I've ever really needed anyone I've been alone, every single time friendships have failed me. I think I've really shut down with all people outside of family and I just no longer wanna invest in people who have no value for me. Whether I'm broken or not or how people view me I'm never allowing anyone to have such blatant disregard for me as a person again.
I'm tired and can no long sit up so I think I'll go crawl into bed so the hours pass...
Pondering my phone calls tomorrow or just saying chuck a duck and go to the ER. Thing is I am so afraid its about equal in wanting and not wanting to know whats wrong now. Spent all day in bed trying not to move and then got up sometime after three. I don't wanna call the billing office nor do I wanna call my Dad. It's like you cannot afford to live and you cannot afford to die and either way your screwed. I'm so tired of hospitals and surgeries and recovery and pain. For awhile there I thought it be almost a relief if I had cancer cause at least then I'd know I'd have some kinda end. But this mess with my spine and how it tortures me seems to have this limitless way of torturing me. This week I have felt parts of my body inside no one should ever feel and its really rather terrifying to say the least.
Called this morning about m,y balance and what I had to do to be seen by Dr. B. I have to call billing tomorrow and go from there. I have such strange things going on with my head and neck and just the fear of moving and getting up or down. I'm not sure how many more days I can do this just so I can been seen and I know I need a mri cause something is so wrong. So I guess I'll see what is said tomorrow since I know it's pointless to go to the ER cause they won't order a mri and only do a x-ray which is nothing and then say "Well what can we give you so we can send you home" Yeah... not kidding that the kinda treatment you just get and honestly I can't see a doze pack helping me at all.
I'm scared and I'm not sure my Father can or will even help me, even if I took every cent I have it's not enough to cover this. On the flip side to all this I don't wanna go cause I don't wanna know what he will tell me. I just can't handle one more bad thing any more or one more surgery. I'm not even sure how I could get dressed or leave the house on Thursday to go to my other appointment given I'm terrified of something happening to me much less in public.
Ahhhh this is a total mess and I just cannot deal with this all any more. I keep playing in my head over and over "What did you do to yourself now? How could you let this happen again! They just fixed you less then 2 years ago what is wrong with the hardware now."
I keep blaming myself like I did something wrong or bad and one again I'm being punished. I know it's not true but you cannot help but to feel that way about yourself.
I feel like I've taken my Mom hostage cause shes trying to help me and I just keep crying and crying when everyone is asleep. Tonight I could feel things moving when I breathed.
I want this all to go away and leave me alone and I cannot awake from this nightmare...
I don't think people really realize how silently life can be terrifying. Today as I sit up I think a disc in the center of my back may be going. No matter what I do even not moving it just hurts like you've been shot in the chest. My torso has this like invisibly tightness around it the longer I try to stand. I took a shower today but then immediately went back to not moving. I don't know what to expect and cannot trust making even the slightest of movements. Which hey even if it's tmi is scary even contemplating going to the bathroom. My entire body feels foreign to me with things I cannot begin to describe to anyone including myself who could begin to understand. It's like when you're so used to feeling nothing don't mess with me and make me feel just how messed up this body really is.
Sometimes I feel pain is the loneliest place on Earth to be. I feel like crying but don't wanna wake anyone up. I am so tired sometimes of just living through complete and total agony it's like you are trapped in your own body but it's just complete desolation except for you and the endless misery and fear.
Sometimes I think why give me 20 years of my life being semi normal only to turn me into this thing? An that's sort of how I view myself now as like a thing. My leg will never look like the other ever again no matter how many procedures they do to me I'm just ruined. This is going on year two of me having a discolored limb from a leaked infusion in my arm. I pretend it doesn't bother me and make jokes about it to others but when I look at myself, really look. I just cry...
