I'm thinking of you Rae!!!!!! I hope your feeling alright and your healing OK from your little "tune up"...:):hug:

Treca

How ya doin' ? Rae
 

Rae its been over a week now since your stint in the hospital, so how are you getting on? are you still sore/tender? do you have any stitches to have taken out?........its amazing how quickly you have bounced back....hope you are pain free now and that the one lead you now have is doing all the work that you need to keep that darn pain at bay!!!

You are a great friend to have and you bring so much joy to this forum too....I love reading your posts......:hug:

Jackie:hug:

Hi Rae
I should be in bed now after 2am here ! i hope your feeling better ! how have you been getting on since your rewiring? I saw the post about your gradson's smile and it melted my heart!! xx j

I just HAD to share this 'letter'.....
 

I found this as I was going thru some things last night....

This is SO 'weird' I decided to share this letter I wrote to 'myself' back when I was making the decision to get my implant. I wanted to have the letter on hand so that I could look back on it and be reminded as to where my frame of mind was before getting the SCS.
I guess it was my way of 'insuring' that I didn't cast any blame on it if the SCS didn't prove to be a success.....
The 'WEIRD' thing about the letter is the very last sentence!
The very last sentence in the letter is the name of this thread!!
However, the very last sentence in the letter was almost meant as a 'goodbye' to the world kind of thing..... believe me, I truly was at this point.....several of you can completely relate......you know who you are :hug:......

The Letter:

Note to Self........ 10-31-09

Regarding apprehensions about getting the SCS implant....
If I seem to question whether or not this decision was a mistake or not...
As of now - and including the past 5 years of my life - I am unable to HAVE a 'LIFE'. The peripheral neuropathic pain in my legs has pretty much rendered me useless to society. I am doing the bare minimum at work (it's a wonder I even still HAVE my job!)
I have become a person I cannot stand to look at in the mirror.
I HATE what I've become and am becoming more and more bitter with life in general
Guilt plagues me night and day. I am no wife and I barely even exist as a mother to my children. Even Sadie (my boxer dog) looks at me with a sadness in her eyes.
My precious horses hardly get any attention whatsoever...the reality of the possibility of having to give them up gets closer day by day.

I have had several mental breakdowns in front of my family.
I have begged God to just let me die.
I am trapped in a wonderful life gone horribly wrong

If the implant happens to be a success, then great. However, the past 5 years have been complete hell and I'll never understand why God (Whom I've served with all my heart and soul) has allowed this on me....

However, IF the implant is NOT a success, I need to remember and remind myself that this was a last resort....not to blame IT on any pain or anguish I may suffer because prior to getting the implant, I already had lower back pain and muscle wasting from being incapacitated.

So....this 'note to self' is here for me to have in writing to remind me that my life was already at the bottom of a pathetic abyss, so as not to resent the fact that I may or may not have made a terrible choice.

At this point, I don't feel that my life is even worth the cost of having this procedure done.....my apologies to the already declining healthcare system....
However, due to the fact of being 'trapped' in this sorry situation - I must at least try this ONE last effort to get my life back,...for the sake of my parents not having to bury BOTH of their children....and for my kids not having to bury their mom at their young and tender age.

I'm falling apart at the seams as it is, so the SCS is not to be blamed for anything other than to have been one last and final hope.
Evidently the HOPE and TRUST I put in God is meant to be seen on the 'other' side of this life.....

........it was good while it lasted.....

I'm sure many of us can relate to that letter.

I hope it didn't bring anybody 'down'....it was just a stark reminder of where I was 15 months ago when I was not sure if I would regret the SCS or not.

Here I am now, despite needing some 'maintenance work' done on a migrated lead....I truly am grateful for this unit.
Part of what had me in such a fragile mindframe were all the medications I had to take.......some of them are known to cause suicidal ideation. I don't take all those meds now. I do still take breakthru pain meds....and am dealing with a lumbar issue that seems to be getting worse, but at least I'm not living each and every moment feeling like both my legs are on fire....and that feeling of wanting to crawl out of my skin.

I LOVE what the SCS does for my legs. No regrets.

And, as far as the lower back issues...I've peeked in over on the Spinal Forum and will be seeing my doctor about some options I can look at. I will find out what procedures are ok to do with having this SCS.

I'm glad I found the letter. It really did help to remind me that it isn't the SCS that is causing my ongoing problems. The SCS is doing exactly what it is supposed to do.....my neuropathy pain in legs is NOT felt....with the exception of some breakthru pain here and there. The SCS is doing it's job.

Hugs to all :hug:
We are in the middle of a snowstorm and the kids are home from school today.

I sure hope Jackie's new battery is doing good.......I've been thinking about her alot today!!

Rae
:grouphug:

Yes I DO Know
 

Oh how I thought and even shied away from SCS when at first Cleo, my wife, brought it up to me as a wonder working technology about which she had read in her investment club readings. It was there. It was something that could work. It might be restorative of the life or some portion of it we once knew. She placed the article in my hands and I read.

I was fearful. The risks were the usual, you could die, you could suffer irreparable spinal cord injury, and on and on.... but it SEEMED to be a positive opportunity out there. Nevertheless I feared. I had already been through too much surgery to want more. I had been under general anesthesia 24 times by then since the wreck, and I knew that sometimes folks do go to sleep and remain that way. I did not want another surgery, and pushback I did...... for months.

Life was a prison cell for me much of the sort that Rae, you describe, with the exception that my pain was SO awful, I remained drugged to the point of remaining in my bed most of the time for four years. I referred to our bedroom as my prison. Both Cleo and I grew to dislike its familiar walls.

At last Cleo cajoled me into discussion with my physiatrist regarding the SCS. You've probably seen my thread if you are reading this. We spoke, the doc and us. He gave us ANS St Judes info and DVD for learning, thinking, praying, and then a return visit, while also suggesting I was of any patient he had ever had the top patient who came to mind for such a surgery effort, telling us as well that it was a last resort in therapy for my pain profile, although in the back of my mind I knew there was another if I allowed the heartless one his ways. Many a time since the wreck, I had wished that I had been a sheet draped fatality on the roadside instead of one of the walking wounded. God's ways and purposes are often mysterious as we take this walk through life.

Ultimately being persuaded, by wife, doc, materials, and actual telephone conversation with a patient ambassador for ANS, I did decide for the surgery, besides which, I knew that it was possible I might not awaken from the sedative [morbid but true]. Awakening, and feeling the release of the pain during Trial was such a veritable blessing that I wondered had I skipped death and gone straight to heaven! Delight! Joy! This stuff worked [even though it turned at the last minute to be Boston Scientific rather than ANS].

I was hooked. Wanted the permanent right away. Almost was one of those police restrained patients who would not willingly give up the trial device. I did not want to go back to pain for the interim as permanent implant was decided upon and then scheduled.

No, I wrote no note to myself as Rae did prior to the Trial, but I remember the thoughts well. The wondering why by happenstance I had been consigned to living hell and rendered unemployed. Why I had lost the means to support my family in any fashion, let alone the privilege they had known pre-wreck.

Rae, you let us into your heart; made yourself vulnerable, gave again as you have constantly done through this and other forums. You have shown through your bravery that life can come at least part of the way back to something approaching normalcy. Even though none of us are canonized as saints, you have a very special place in this forum of pain, of attempts to surmount it, to come alongside. I am grateful for this among many things about you dear friend.

OK, so I have probably exceeded the word limit, but I did not profusely use smilies,
Grateful,
Mark56:hug:z

Hi Rae
thanks for sharing this I must have missed this Rae and have to say I found it hard to believe that you were ever this down as i have only ever known you with the smiley encouraging words you gave me and everyone else and it is hard to read about someone in such pain.. it also has brought tears to my eyes as this was me just 8 weeks ago and my god is my life changing thanks to my scs devise. I am so glad you are recovering from ur recent surgery and thank you for all the support you show people on this forum
xx J

God plays a big part
 

Yep Jenna-

I find that God plays a big part in this path we follow.

Yes indeed,
Mark56:smileypray:

Thank you for this Jenna....
It really REALLY touches my heart when someone says something like what you said. Because, like the letter reads, I felt completely useless and no good to society.....so when someone gives me such a loving reminder of being appreciated...it really means alot. Thanks :hug:

Yes, I felt compelled to share that letter because I was at that point. And that is the point MANY people are at who come to NT.
I 'hide' my pain in the smilies and stupidity, and I feed off of humor.
I just wanted people to read that and know that I was there.....I was honestly feeling my life was coming to an end.
I was living out a secret 'goodbye' to my family......and every time we'd share a precious moment, I'd get a 'sad' feeling thinking.....this is the last time we're going to be doing this together.....
I was doing my best to make as many happy memories for my kids as I could, so they would have those fond thoughts of 'mom'......

This is what chronic pain does to a person. I've been there.
I wanted people who know me to see that I understand what it's like to be down and out. ..... that I'm not 'shallow' and always 'happy and funny'.....
All those smilies you see are actually tears.
They are also like 'medicine' to the soul, which in turn brings JOY! :)
.......I'm pretty sure this holds true for alot of us......if not MOST of us....
So.....BRING ON the SMILIES!! :circlelove:

Thank you for sharing that Jenna. I'm so happy that your SCS has given you your spark back. You are young! You need to LIVE!

Rae
:hug::grouphug::hug: