Originally Posted by PamelaJune

I feel in my mind I should be happy they say they have found something. Instead, I'm shattered, it's 6.55pm and I'm getting into bed already. I cooked an early dinner, basic meat and 4 veg, couldn't face anything more energetic. Did the animals and garden watering. Got the sewing machine out to make a birthday gift for my sister, money to tight to buy anything but I have materials here and if I can get the energy right I can create a nice gift I hope. Just so shattered, still reeling from my vitriolic sisters in law comments and keep telling myself to put it behind me. I'd rather give them a piece of my mind but I will not lower myself to their level. I'm turning the other cheek and being strong, if my grandma could do it, so can I. Nasty vitriolic people are not welcome in my life anymore. Be gone you horrid things, I'm singing my song I get knocked down but I get up again.... Sorry felling down and shattered, know you NT'rs understand, we are all in a tough place right now. Pulling on my big girl soldier pants right now and putting my thoughts in order. Love to you all

Originally Posted by PamelaJune

I feel in my mind I should be happy they say they have found something. Instead, I'm shattered, it's 6.55pm and I'm getting into bed already. I cooked an early dinner, basic meat and 4 veg, couldn't face anything more energetic. Did the animals and garden watering. Got the sewing machine out to make a birthday gift for my sister, money to tight to buy anything but I have materials here and if I can get the energy right I can create a nice gift I hope. Just so shattered, still reeling from my vitriolic sisters in law comments and keep telling myself to put it behind me. I'd rather give them a piece of my mind but I will not lower myself to their level. I'm turning the other cheek and being strong, if my grandma could do it, so can I. Nasty vitriolic people are not welcome in my life anymore. Be gone you horrid things, I'm singing my song I get knocked down but I get up again.... Sorry felling down and shattered, know you NT'rs understand, we are all in a tough place right now. Pulling on my big girl soldier pants right now and putting my thoughts in order. Love to you all

Originally Posted by ger715

Pam,

You have shown yourself to be very compassionate. I think this will make your husband feel better knowing you are not allowing her to hurt you, but rather are aware she is in need of prayers. Gerry

Originally Posted by Bouncybabs

Hi everyone, I had my NEVRO senza trial in August 2013, and it was brilliant. I've two leads, one covers c2 thru to t3, the other is in my lumbar. Post trial was initially terrible, however, after multiple reprogrammings, we hit gold...for a while. I managed to come off oramorph, and was reducing my cocodamol, then suddenly everything started to hurt. Every day, I would have pain free times, and then like turning a switch, my arm, spine and legs would start hurting. I can only equate it to an epidural wearing off during full blown labour. It really started to mess with my head, it would make me scream out loud and then I'd cry. I've never been the 'pain person', I was confident and self assured, merrily going for surgery after surgery (8 in total in the past 14 years).
Now, the pain is almost constant, and the device is causing pain. Everyone I know who has had the implant (I went on the INPUT course at Guys and St. Thomas' in London), and at this present time, we are all in such pain. Could it he the weather? It has been cold and wet for months now, and that is the only common denominator .
Sorry if this doesn't make much sense, but I just need to find out whether anyone else has experienced this? We had a 9 month reunion, and all of us are more depressed than we were pre implant. I had my implant privately, but 3 months after the implant all insurance relating to my spine has been removed. Now I'm at the mercy of the NHS and I've got to wait until 9th April before I can be reprogrammed.

Originally Posted by PamelaJune

Yes they do indeed need to be more upfront, I'm so sorry you have to go through all that you do Ger. You have to wonder sometimes what is gods plan for us who suffer with this often unbearable pain. Are we the guinea pigs for future life and the trials we suffer are paving the way for better health for them. You have gone through so very much.

To my mothers horror, but more recently acceptance, I've said that if it comes to chemo I will not be participating, the pain I live with now will not be cured, I awake from my bed every day often thinking what time will it be when I can get back in. I will not go to bed during the day, an ingrained habit left over from childhood. My waking moments long for the moment my evening drugs kick in and knock me out, for however brief that often is. The peace that comes with being knocked out beckons me throughout the day. Sadly, my pain wakes me, or as I more recently learned, I'm still crying in my sleep. Anyway, I won't be taking chemo so that I can continue to live this pain filled life. I know that sounds selfish and I don't mean to denigrate anyone else who undertakes chemo, for most, it is a cure to live a pain free and wonderful life. It's just not for me.

Hugs to you Gerry, this life that has chosen us obviously didn't pick us at random, I read these posts and I can see, really see there are many of us on here who are battlers and survivors. It must be gods plan, I hope so, and I hope when we face our final moments all will be revealed.

Originally Posted by PamelaJune

So, the long awaited for appointment with my PM arrived yesterday, I say long because his secretary seemingly was unaware he had treated me in hospital in January as I was admitted under my treating NS, who spoke directly with my PM on the phone and my PM did the nerve block at one of the hospitals he practices at. The hospital will have billed medibank direct on his behalf and possibly only his accounts team were aware. Still, I'm sure he has a diary that she manages?

I followed his directions to the letter on discharge and as requested sent an email explaining any noted changes etc, the email went to his secretary (as I expected it would) no response, I phoned, the secretary briskly says he has actioned the medication authority request in the last paragraph. I get the feeling she is about to hang up. Great, but what about my pain that has increased and is increasing by the day. She says "oh he only reads 2 paragraphs at the most" I reply, it was only 2 paragraphs with the first paragraph explaining my pain.. Oh, I will have to find it and highlight the first paragraph then for him to read and he can call you back.

2 hours later she calls and says he can't do anything over the phone and we have a cancellation appt on Monday. Did I mention she's faffing around and making that Hmph sound, you know the one that people make when they don't really believe you...

Off we go to the appt along with the X-rays, sure enough there is the email and paragraph highlighted. He looks at me, then at my husband and says "hmm how do you feel, you don't look to well". "Have you had a fever?" I'm thinking, is he talking about me or my husband. "Let's have you up on the bed and have a look at you". Oh, it must be me then.

So, up on the bed, quiet for a moment and he touches a spot on my lower back, I nearly hit the roof, crickey that hurt. Touches somewhere else, somewhere else and somewhere else, yes there is pain in those places, I've marked them on the body chart in red. Silence, he goes back to the spot, touches it again, I come back down from the roof a moment later. He says "that tender spot is where the pedicel screw is" I think you have an infection.

Now I've spent most of the weekend in bed knocked out with meds. I took my full dose of painkillers on Saturday, slept all afternoon, got up at 7pm so I could take hubby to the pub and he could enjoy the game, have a drink and get back home safe n sound. We get home safely and I'm straight back to bed, up at 1pm Sunday and back in bed by 5pm Sunday. I've slept the whole time, oblivious to what's going on around me, never ever done that before. (Oh, his team won, happy days, awesome game, even I enjoyed the first twenty minutes, then I went and had a rest in the car and back in to get him when the game finished).

So back to my PM, he says we will do another block the next level up, he calls my rep there and then and asks her to call him back about the paddle, then he says he will also speak with my NS about doing the paddle as he can do the block and NS can do the paddle at the same time.

We go out to the secretary for her to schedule the procedure, I'm confused as I don't know what procedure is happening and I'm not feeling particularly well. The secretary flicks around the Screen and cheerfully says, ok booked you in for March 19th and follow up Dr appt June 6th.....

Great, I'll just put my pain on hold for 6 weeks, let's remember the 2nd nerve block was supposed to have been done one week after he did the first one on January 21. Do I sound disillusioned? I am, I'm feeling like a person who is about to once again enter the wonderful world of merry go round the hospital Pam once again not being believed.

I say to the secretary, so what procedure is he doing, she has the paper in her hand. I get the humph again and she whisks away, comes back and says the nerve block. So we have been stood at the counter now for ten minutes since we left the PM office. By chance (thank heaven) he comes out, puts his hand on my shoulder and says I will call you with the results of the blood test and we will get this procedure done quickly so we can get you feeling better, he looks at the secretary and says when are we doing it. She replies march 19, I think time stopped, he looked at her, silence fell, other patients waiting all look to the desk. He says slowly, when? She fans herself and says, ah I will uhm! I uhm.

He interrupts and says we will get you in on the other list, I have two lists, we will call you with an appointment. It won't be that far away.

So, I'm home, had another nights sleep courtesy of the hated knock out pill and I will go have the blood test shortly, I'm feeling really low and despondent. Feel queasy still which I've felt all weekend and had put down to just general malaise, maybe I do have an infection?

I just want my life back, I want to be able to go out, talk to people, meet people and have a laugh without having to go lie down in my car. My poor husband, how much more can he endure. I'm sure another round of hospital merry go round Pam not being believed will be the final straw.