NeuroTalk Support Groups - My story so far!

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MERCY! This is intense! :eek:

Mark's words are golden!

And your precious grandaughter! Oh MY!! You've been thru too much my friend! My heart literally skipped a beat when I read your latest post!

It's the middle of the nite and I can't even see straight, but I couldn't log off without sending you a hug!
......thrilled that this motel has internet access.....but too delerious to type! :eek:

Praying 4 you!
Rae
:grouphug:

Quote:

Originally Posted by Jackiey (Post 747913)

Went back to hospital yesterday for another wound review:rolleyes:thankfully all is doing well and going in the right direction at long last!

Mentioned to my Consultant about the battery taking over a week before it needs recharging.....and guess what!!!??? he said 'oh I didnt realise you had to charge the other one every second night'....:eek: said obviously that other one was definitely a faulty one....he has had patients that dont recharge sometimes for two weeks and thats with it on high 24/7......

My Rep also rang and told me that it could take up to three to four months:eek:yep thats right!!! before they will receive the actual report on my faulty battery. But not to worry that as 'a gesture of goodwill' they will look after my finances. She said their 'legal' department said they needed proof first before they pay out. I told her that I COULD Have gone the legal route with this but I didnt because I trusted them that they would look after me!!!!!.....now Im thinking maybe I should have and let them pay FOR EVERYTHING...but you know Im not that type Id rather they just pay for my excesses as agreed and lets forget the whole sorry story then....

So of course I relayed this information back to my Consultant....let me just say he was NOT a happy man at all. He said by saying it was a 'gesture of goodwill' was taking the onus off them and where they actually thinking that perhaps it was either me or him who was at fault. He said he was very irritated to hear this and would be getting onto her boss asap to tell them to pay out or lose out!!! He said he WILL end the contract if this isnt sorted now!......so will have to see how that pans out.

Today I got a call from my daughter to say that our granddaughter had banged her head off the floor:eek: and she had a big bump and bruise. We were beside ourselves with worry when she rang. So we accompanied her to the hospital as instructed by her GP. Thankfully Cara was ok. After 4 hours of observations we got the all clear to come home again. She is perfect Thank GOD....but to observe her for the next 24 hours. I told my daughter this is what parenting is all about and that Im sure its the first of many....but hopefully it wont be.....I said we went through the same trauma's with all our children too.....thankfully I had my SCS with me because I ramped that stim up HIGH and walked around too just to make sure I didnt stiffen up.....am wrecked now though, so having a lie down!

Hope you are all keeping well and looking forward to the weekend too..

Take care

Jackie :grouphug:

Oh jackie!!
so sorry to hear about your grandaughter and so glad she is ok!! my god you are really having a tough time of it!!
I read Marks post and I agree, I really thing you should talk to a solicitor even if you don't take it further I think it would be important to at least document what has happened so far and at least get there advise. how dare they even mention that good will gesture!!
really hoping your not in too much discomfort or pain after a spending all that time in casualty

big hugs J

Quote:

Originally Posted by Rrae (Post 748355)

RAE:hug::hug::hug::hug::hug::hug:

SOOOO good to see you back, even if your not actually back yet :D....we have MISSED you so much...

Yes a huge thanks to Mark also for his advice which I will definitely be taking on board. I am not letting this go, Im like a dog with a bone now;)

Your advice is priceless Mark:hug:

Jenna great to see you here again, we have missed you too. You are obviously having a 'life' now with your new SCS , how wonderful.....Thank you also for the advice.....

Im definitely gonna get this sorted out....so thank you all........

Feeling so much better these days now, thankfully. Cleaned out the inside of my car, not that it was that dirty, but as I havent been driving for the past 3 weeks I wanted to have it spic n span before I do start, which I will do TOMORROW!!!...freedom at last, I hate not being able to drive myself, but my husband INSISTS in doing it for me until Im 100% fit. So Im going to do that tomorrow.........At Last!!...Then back to hospital on Tuesday for another wound review and its onwards and upwards from there (well thats my plan)

Hope you are all enjoying your Sunday ..........

Jackie:hug:

Ooops been reprimanded for too many smiles :D ;)

1. Saw Rae post...... a very good sign she nears her home.:OuttaHere:
2. Jenna weighs in..... thankfulness that she is on board and enjoying more of life.:Soapbox:
3. Jackie, dear Jackie will maybe be like a dog with a bone and go seek some advice licensed and allowed in Ireland regarding these past many recent events....... WHEW:Poke:

So glad, so glad indeed,
Mark56:grouphug:

4!.... yes, Rae is home and VERY happy about this

5. SO HAPPY to see Jenna posting!

6.... JACKIE!! :cool: you rebellious creature YOU......daring to go past the 15-limit on smilies :D You have no doubt alerted the radars of the smilie-police!

7... Mark..... you Rock. :winner_first_h4h:

Thank God for the sunshine!

Yesterday was another day for a wound review.....all went well and the steri-strips have now gone and just a small bandage covering my new battery site :)

Plus Ive been told I can shower again wooooooooo hooooooooooooo

Did anyone notice:D? I hadnt showered in 3 weeks:eek:.......well all sorted out now!

Ive been rescheduled to have another reprogramming session, which is what I had intended doing back at the end of January, only to find out my battery wasnt working right!!! so hoping to have a session in the next couple of weeks........

Im having terrible stinging around the incision site at the moment, Im hoping that will subside soon as its driving me insane!!

Been to my GP today too......have a weird eye thing going on....I lose sight in my left eye every night. Its like someone has taken my photo with a Flash lens and I can still see the flashes in my left eye all night long:eek: SO now have to go see an eye specialist!! will it EVER end....sorry its a bit off topic!

Been out walking today with my dogs today as the weather here at the minute is just beautiful, if a little chilly ....but thankfully I can go out now, but really need to get the stim to cover my legs/back a lot better than it does because its not much use to me otherwise. Its great now as Im sitting/lying down on the couch typing and Ive got this great massage going on from my hips to my toes in both legs.....so thats a plus....but I dont WANT to have to lie like this forever.........roll on my reprogramming session!!

Hope you all have a great day/evening

Jackie:grouphug:

Ahhhhh that Clean Feeling

Yep, how well I remember being allowed to resume the shower. Ahhhhhhhh....
So glad for you, Jackie, that some normalcy is returning.

Walkin the dogs, lookin at the flowers coming up, sitting on your sofa and feeling a massage, then the forthcoming reprogramming! Hope it goes well and soon! Then you will be back where you should have been after the first wave of implant work. On with the procession to right working!!

Hoping and praying,
Mark56:hug:

The EYE thing! :eek: Sorry to hear this!! See, this is what I'm referring to regarding 'other' issues keep popping up...and it's just so frustrating!
I have an issue with my right hand (where the thumb joint meets the wrist) that is getting very VERY bad......it's an arthritic condition combined with an old wrist fracture of sorts from years ago......I can't hardly function with it and I'm wearing a special wrist support thingy......not to mention very VERY painful! A whole 'new' kind of pain than all the others... :rolleyes: lovely
These are the frustrations I'm getting so cranky about......and have nothing to do with SCS, so I don't really talk about it....
But DANG! it's hard to stay ahead of the game when crud like this comes at us! :eek:
Anyway, I hope the eye thing can be rectified soon!

Regarding the stinging pain at your incision site.....would it help to wear lidoderm patch or something similar to dull that pain? Ice?

Nonetheless, you ARE on your way to being 'normal' again!
And oh yes how wonderful a shower can be! :)

Quote:

Originally Posted by Rrae (Post 749529)

Rae you need to go and get yourself sorted and NOW!......and why wouldnt you talk about it.....its all part and parcel of what we are so you can share with us remember :hug: You spend your entire time listening to us too !!

Yes I have used my patches in this area for the stinging and today I had to up my meds again as my lower back was very heavy. I reckon I need to 'slow' down just a touch, well so my husband says, dont run before you can walk he said:eek:I will crack up yet!.....when I feel good I go and do what I want and pay the price later, but thats me unfortunately....anyway feeling more relaxed this evening and taking it easy , as Ive been told;)

Had my shower earlier and it was bliss:circlelove::circlelove:

What a GEM you are!

Thank you Jackie! :hug:
You and Mark BOTH sent me PM's of concern and gave me the 'kick in the butt' that I needed......true friends indeed.

Yep, we gotta tackle it one thing at a time.....it can seem like an uphill swim but hey...... :cool: our grandkids are worth it if nothing ELSE!! :o My little guy makes me MELT every time I'm with him.....! He looks deep in my eyes and smiles and makes ALLLL the pain go away!

THANK GOD FOR WONDERFUL FRIENDS!!