I am sorry to be writing another negative post but I am having such a rough time and just need somewhere to go so I came back here I am working very hard to change my attitude and I even gave my walker "Betsy" a makeover but I am still having a hard time. I am having so much trouble charging still and it makes me sad because charging used to be pretty easy just put the battery thing on my scar and it would work now its like it won't even find it and then once its on sometimes it does not even charge anyway! Then when I turn it up it still causes those sharp new pains like someone stabs me all over the back! Of course, I know the cause of this is my leads hitting the dura instead of where it should be because of my fall (which is what the stim guy said) but yet I am not messed up enough to fix my leads! My doctor office wont even give you pain meds either so they pretty much let you suffer unless you go for more injections that don't even work! And lets not forget the way she is so condescending to me and gets mad because I already had to have a revision last year and she promised me the leads would never be able to move! Its not enough that I am going through all this but now I am also having more problems with getting sick from my blood disease and my other conditions...its like they are all making each other worse and its bad timing because I have finals for summer next week and I still cannot do my piano and I am so freaking out because I need to keep really high gpa to even get into the program for teaching and also graduate in May! I am on anti depressants which are good and in therapy which is also good but it only helps so much and I am trying so hard to look past all this and think positive and be strong for everyone but it is getting harder! I feel like crying and that is so embarrassing I mean, I know there are people who are going through way worse and it makes me feel bad for even feeling bad. Sorry, for this posting I am really sorry I have a bad attitude today but thank you for reading and listening. I don't want to bring the board down with my bad attitude and I will try to be in a more cheerful mood next time so that I bring more to this community

You know, feeling down, recognizing challenges, understanding the hurdles... all of that goes into the means to surmount the difficulty. When you hurt, you hurt. No amount of denial will make the pain go away. Acknowledging it, putting it into perspective, gaining care to manage it if possible, such is the make up of we who are here.

If your leads are misaligned due to trauma and the effect of the device is marginalized as even your rep seems to agree, this all adds to the notion of presuasion one would think as you address the pain issue with your pain doc. Just seems common sense. Maybe your doc, as you have posted before is wanting to get beyond the neurological visit you have scheduled before going further on your treatment. Kinda hard to speculate, but one just has to wonder.

Depression cripples as well, and your care for such an issue, both medicinal and therapeutic sounds like a couple of steps in such a good direction. Hang in there with it. Help can come through both of those approaches.

Hang in there, hang in there, hang in there. As one singer to another, I am pulling for you. You can do it. You have my prayers too.

z,
Mark56

You know, it's okay to feel down and frustrated about your situation. Go ahead and vent all you want. You have every right to feel this way, and this is NOT baseball so crying is allowed! We have all been there!! That is what is so GREAT about this place...no one judges...we all accept and support each other no matter where we are in our journeys.

I have every belief that you will get through this....look at all you have accomplished so far in your life with all the adversity you've had to face! You are one heck of a trooper!!! I'm not so sure I would have been able to accomplish 1/3 of what you are doing at the height of my pain. You can and will get through this....keep the faith!!!

BTW - I LOVE Betsy!!! She is AWESOME just like you!!!

Betsy ROCKS!!
You are certainly at the right place to pour your heart out! We all 'know'.
I get SO VERY frustrated when I hear of legitimate pain sufferers not getting the pain relief options that i KNOW are out there!! And it seems as tho younger people have even a harder time getting pain meds. I guess it's because of the negative stigma that all the abusers have put on it.
It's so not fair and I truly empathize with you.

I believe you WILL find the right doctor who will embrace your situation and really look out for your best interests and do whatever it takes to get your quality of life back.

Your SCS needs attention. simple as that. You need to demand that much.
It may help to even have an 'advocate' with you, someone who can speak on your behalf of your rights.
It's ok to cry......we've all cried many MANY tears in pain......men and women alike....there are no 'rules' to keeping our emotions in line. Pain will destroy a person from the inside out....mentally and otherwise.
You won't allow this to happen.
Your motivation speaks much louder and we all know how motivated you are. NOW you just need to right people looking out for you.
You should NEVER be made to feel condesended. I would get 'angry' and make a stand.
My heart is with you.......
Seems like there are a lot of people hurting more so than 'usual'.....?
Not sure why....
We are all here for each other.....

There will be days when I will come crying for my peeps to lift me up and give me some 'hope'........you aren't alone

Caring
Rae

Just yesterday I vented and ranted and the support I got was huge boost for me. The same reason I don't vent/rant to my wife, was the same reason I had a hard time getting myself to post mine yesterday. I just feel that complaining makes people look at you different and people think your just over a cry baby.

But you now what, my rant/vent yesterday proved me wrong. It did wonders for me. Everyone made me feel a lot better.

You blow off steam as much as you want or need to.

Mail me anytime you just want to talk. My mailbox is open to anyone at anytime.

Imagine that this forum is a furniture store. Lots of big tables, chairs, dressers and beds everywhere. Everything you see in this furniture store is supported by sturdy legs. Strong and sturdy. You can count on each piece of furniture to be solid and not give or weaken.
You at times may be the chair or the table as at times every one here can be those items too. When you are the main body of furniture, then someone has to be the legs. That is were everyone else falls into place. If someone who is a leg becomes unstable or weak, then someone else will step in and become that leg.
But you will never be without support. Never. I, along with everyone else will be ready and willing to be your support, when ever and how ever often it is needed.

I thank you for your Post.

Mail me if you just want to talk. As one day I may need to just mail you or some one else to talk.

You said it all BINGO!
That's what we're all here for !!

And yes, if there are ever times, you don't really want to 'let loose' out here on the main boards, then just send any one of us a pm......that's what we're all here for.....

I'm so glad your spirits were lifted Bugguy.....i prayed. I was thankful I saw that post of yours late last nite B4 logging off.....


Rae

Hi everyone, thank you so much for reading my post and replying to me! I have been extremely busy the last few days so thats why I am just now checking back in. I have had a lot of stress with family issues and school issues. I am feverishly trying to learn my 3 songs by my piano final on sunday night! At least I finally figured out the chords and notation so that helped but its still a lot to do. I will write a better reply when I can. I did get to show off my "Betsy" to my grandma and mom the other day and they liked it but I also did a lot of walking so I am in really bad pain. At least I talked to the wheelchair store about my broken wheel and they are sending me a new one free and it looks like it will be here in time for my honeymoon in August so that is very good news! I am also trying to run a support group for young women that have had or have had to have hysterectomies at a young age (like I did) and right now it is online but I am hoping to make a real time one and I am also getting ready for my husband and I to volunteer next week to help collect and sort school supplies for our public school kids! Yep, I am definitely busy and it is good but not easy when you are in so much pain! I hope everyone is having a good weekend! take care and thank you so muchRrae, Mark56, bugguy8,kzlrogue !

So, I have decided this will be my spot to come to (or thread to come to) when I am feeling bad about things and also when I have good things to say. Today, is not a good thing to say day I am afraid I have been sick all weekend thanks to me picking up some germ and my lovely neutropenia making things very worse!!! I have still been trying to practice my piano and am prepared for my final my teacher is letting me do it one handed so I am so happy about that because when i added the left i got all screwed up! After I get that done tonight I just have to concentrate and worry about my music final next week and I am done and have a break for at least a couple weeks I need a break! Things have been so crazy around here, there have been major issues in my husband's family and none of us has really slept in days which adds on to make me sicker . And, I really need to vent about this I am really tired of my friends texting me and emailing me about their crises of not having boyfriends or being upset because said boyfriend did not call I am trying to be a good friend but its so hard because I am going through more major things and worries like "will I ever get out of pain", "how am I going to get through this semester again" "I am scared of going to a new doctor and scared they won't help me" and also worries of "I am scared of missing class all the time because I am sick every week" and "what if they put me on shots like my mom does" so yeah those are my worries. I also hate every time my friends gripe about exercising around me! I would love to exercise and be able to do all that again and of course I really hate the "I am so fat" talk because I do have weight issues and since I cannot exercise they are worse especially since my stupid hysterectomy! The only way I deal with it is I try to listen and nod or just say something like i am sorry you are going through this and then politely get off the phone. And then also I am trying to be supportive for the hysterectomy group but sometimes I wonder about well gee I wish my hysterectomy was the only bad thing that is going on in my life and I know thats an awful thing to say and I am very ashamed to feel this way but its the truth. I just get really fed up with everyone (like my friends or even some family) constantly expecting me to be there for them but when I am going through all this major stuff they disappear. I am the type of person that likes to help everyone and I try to help everyone through whatever painful thing I have overcome. I have this young people hysterectomy group and I used to run a domestic violence and also an adult women's abuse survivor group when our leader had to leave. I have also helped out with rape survivor groups too and for awhile I was going to be a social worker so that I could use all of my experiences to really help people but it got way too much for me and I really do have a passion for teaching and helping children that way Before my accident I had two jobs, went to full time school and volunteered now the only thing I can do now is school and volunteer here and there. I guess maybe I have been beating myself up because I don't have that same life anymore and I just have to learn how to have this new life and be happy and proud of myself again in other ways. Its just hard because I wish I was only dealing with one illness or just my chronic pain but I have really serious stuff going on. I am up to 8 or 9 prescriptions with 5 supplements and a vitamin but at any time this could change and they could add more but you all know how that is I have to get back to piano and try to clean the house although I plan on more resting because I really want to do our volunteering tomorrow!

Did I throw you a loop? Good, because I thought if the ball was thrown high enough in the air we could all look up, focus on that ball, get our bod hurtling toward the ball as it reaches its apex and begins freefall. Got that eye on the ball..... running.... pant.... eye on the ball..... and WHAM there was Karl, running from the opposite direction, watching the same ball and we collided. Is this a real Karl.. nope.... just distracting you, purposely.

So much is on your plate right now. So much. Piano [and I am glad for you that final was in front of a compassionate teacher], the trauma you have endured in prior life, the new life with your husband, that PAIN, the old issue of the hysterectomy- and such a traumatic issue that was and continues to be, the wheel on your wheelchair falling off, the tug and pull of class demands, volunteering, and the fear of just what is going on with your uncooperative stim unit of late complicated by the fall and the upcoming neurological appointment. Had I been speaking that sentence, I would long since have run out of breath before finishing.... the volunteering.... and THEN there is Karl. Karl is no one in particular, but for you he is the fella who threatens to slam into you as you have your eye on the ball. Just as some of these "other" issues threaten to take your focus off of whatever is, for the moment, the important issue.

Take a deep breath and look at your hands. Notice yourself for a moment. Just you, well, maybe your husband because after all he is quite a blessing. Reflect on all of these matters which are stacked up in your life. So MUCH that you could collide with Karl. It is enough to overwhelm even a bystander like me!

Some of these fretful issues can maybe be placed into your order of priority. Do you have to invest your personal emotional capital in everything to the same measure at the same moment, or can you step back, gain perspective, see that some things like those who would "dump" on you are maybe a low priority and should kind of take a back seat to some of those more important issues.

So, when I begin to feel somewhat overwhelmed, I may just take stock. Try to figure out whether I might be at risk of "running into Karl" and put some things aside if my emotional capital cannot handle all of it at once.

I would be willing to hazard a guess that your husband will help you with ordering priorities on these things if you really really share with one another. In our household, I became much less a DOLT when I abandoned the usual "firm, staid, quiet, reserved guy posture" and started just blurting stuff out to my wife. She said that until that moment of opening up it had been as though we just shared a home and children because I didn't talk much at all. Kinda hard to figure that one out now if you have read my posts, isn't it?

So, it is quite alright for you to share those "golly gee whizzes" of the overwhelming life here with us, and probably with your husband too.

In the meantime, I will keep my eye out for Karl.....
Hoping I didn't "put my foot in my mouth" here,
Praying you can slow down just a smidgen,
Mark56 PJ

Gentle hugz my new friend. Plz feel free to come here & vent. We all understand. We support each other as we can, listen well, and generally do care for each other. All of us have different skills and backgrounds however we share the pure terror and tortue of chronic pain. Listen to Mark about Karl!
z