Nothing like your own bed
 

Home sweet home, resting, taking my meds and doing as I'm told :hug:

Pam,
 

Glad to hear you are finally home. Hope the pain is under a little better control. Please keep us informed.:grouphug:


Gerry

Living life
 

I had booked an appt with my GP last week so still went to her on my way home as I needed some script renewals etc. she had received a letter from my neurosurgeon so knew I had been in hospital. My NS and PM had both used the phrase when speaking with me your lower back is "blown out" I asked her what it meant because at the time when speaking to the specialists I was adjusting to the new and for me, very high dose of oxy and I was away with the fairies in la la land. She gave a visual to me explaining its a bit like an explosion, or imagine the aftermath of an explosion with all the bits and bobs lying about. My back is collapsing and bits of bone shattered off. Yay, how lucky can I get.

My surgeon in London in 1996 told me that by the time I reach 55 I will be in a wheel chair. I confess I pushed it way, way in the back of my mind and having had other illnesses in 2001, 2, 3 and 4 where I endured countless operations had over 27 blood transfusions and had a very good go in each of those years of "popping my clogs" just as I did when I was 6, 27 and 33. I have lived a very active life raising money for charities doing bike rides of over 50 miles and on other occasions running 10 miles at Richmond. In the times of preparing for those events I was in training and that was all in between working in excess of 60 hour weeks, hospital appointments and in general trying to life a life. I look back and can see life was frenetic but I thrived and just pushed on with living. I won awards between 2000 and 2005 all while I was so ill, Regional HR manager of the year twice, Manager of the year, Trainer of the year twice and my husband also won many awards in his field, including once in 2003 an all expenses paid 10 day round trip to Rio de Janeiro picked up in a limo and treated like kings and queens. Life was good, even though I was so ill, even in photos I had taken, I looked good. We saw the photos taken at my friends celebration of life yesterday, my husband and I both looking, where am I? We both saw me at the same time neither of us said anything.

Mum bought fish n chips over for dinner last night and I went to bed an hour after she came, I heard them speaking about me and mum said I saw Pamela at the pharmacy before she went to hospital and before I realised it was her I thought that poor girl she looks so ill, Lyndon said, I was looking for her in the photo and couldn't see her and then I realised there she was. Pain is just etched in her face and has removed all of her. It breaks my heart and I don't know what to do for her anymore.

Life sure is strange eh, I was so sick between 2001 and 2004 but really, I lived and lived, I have been ill on and off for years and there are few years that I can recall where I didn't end up in hospital, certainly in the 22 years I've been married to Lyndon I've gone in every year. Now here we are in 2014, the surgeons remarks have come back to me so very clearly. I'm 53 this year, I'm very glad I fought my way through those tough years and came through, I'm glad for all the wonderful memories, it's funny how I can see that despite being so ill I was still me. Now I'm just a shadow of myself, working kept me alive, I'm sure of it, I loved my job, I used to love getting up and going in, every day bought a new challenge and I thrived. Lyndon used to get annoyed at me because I worked or studied so hard, he was sure it's why I kept falling so ill. Me, well now I think otherwise, I so want to go back to work, I have a lifetime of experience and I was good, very good at what I did. I worked and studied between 1996 and 2000 going to Uni and getting my masters in HRM and HRD, my employers invested in me and paid for my education and I reaped the rewards as did they. Please god, I promise I'll be good, can I just have my life back one more time, I'm not ready to give it all up yet, I'm not ready for that wheel chair. I wish I could have my horse back and ride away, I miss that feeling of riding more than anything.

[hugs]
 

Pam,

I am so very sorry for everything that you are going through right now. As I read your post, my mind was filled with so many things to say - encouraging words - hopeful words. Like, "This is just the next chapter - it's going to be great!" Or, "Remember that this disease doesn't define us, and a wheelchair won't define you!"

That's what my "head" wanted to say.

But my "heart?" My heart was broken for you. And while we all know the truth of our situations, and while we strive to be hopeful and encouraging - maybe moreso for the loved ones in our lives than for ourselves - the truth is that sometimes this just really sucks.

So tomorrow I'll say all of those things. But today? Today my heart breaks with yours. Today I will simply sit beside you. Today I will let your pain be my pain - your yearning, my yearning.

It truly is so very hard sometimes. The countless procedures - holding my head high and trying to be brave as I walk into the procedure room, knowing all the while how very painful the procedure will be. Allowing myself that one, silent tear to run down my cheek while I am face down on that awful, torturous table, and then brushing it away and walking out with a smile on my face so that I can maybe help erase the worry creasing my sweet husband's face. The surgeries that knot my stomach up in fear . . . filling my body with metal and screws to help hold my spine together, and with cables and a battery pack that fills my every waking moment with buzzing . . . vibrations to help ease the constant pain.

And yet we trudge on. We hold our heads high, carefully applying our makeup of hope and smiles . . . yet inside . . . oh - how differently I feel on the inside sometimes. I'm scared. Frustrated. Angry. Sad.

So tomorrow - tomorrow I'll say all of the wonderful, encouraging things that we truly do need to hear and believe - because it really is all true - we will go on. We will stare down this beast and refuse to let it define, control, or intimidate us.

But today? Today my heart breaks with yours. Today I will simply sit beside you. Today I will let your pain be my pain - your yearning, my yearning.

=Becky

dear Pam
as many understand
i refer to myself as a
physician induced addict
the "monster" must stay at bay
as i get very upset and ugly when
my pain isn't masked by the meds
we are on and a slave to them i am
it sickens me to hear of doctors getting
off as if they had no part in a person meds
related issues
there are doctors who keep person
unbeknownst to them just to keep the money
flowing smoothly into their devious practice
oxycontin for long term then roxicodone for break
through pain muscle relaxers not to mention the meds for cancer
anxiety
then to get stool
softener as it takes a toll on the regularity
the something for the nausea
it all suck no matter what
but as i too say
"it is what it is"
but in the name of the Father
in Jesus Mother Mary
i believe
and to you being mindful
take and do whatever with
trusting guidance so you fell no pain
we all understand having to do this
there are side affects we suffer with too
hope you find it in your heart to allow
yourself a moment and i know it is Not
in your head
another thing doctors are famous for
i also suffer from fibromyliga a disease
doctors believed it was nonsense
well blessed be in your faces DOCTORS
who told their patients it was in their head
ha! to them
feel good as you can
we did not ask for "it" the "Monster"
you are loved and cared for
by our fellow sufferers
keep the faith

Hugs
 

Oh Becky, I'm crying as I read your note. In a good way, thank you so much!

As the tears slip from my eyelids, creating big silent trails slide softly down my cheeks I realise I'm crying with you for you, for me, and for all the rest of our family here on NT. We didn't choose this life. It chose us.

Today I will be strong again, today I will get my soldier pants on and march myself out that door. My mothers older sister of 85 has this past week had a knee replacement operation, she suffers with high blood pressure often 180 over 106, much much lower than it has been for many years since a kidney aorta operation in December2013. So I will march out the door and drive myself over to take mum to visit her only sister. Just a 30 minute hospital visit and I will say no to the coffee stop mum will want to make because later today I'm picking her up again at her request to drive her to my sisters who is hosting a BBQ for Australia Day celebrations. My sister understands, she says she has made the bed up and I can slip off and lie down whenever I need. Because as much as mum says she understands, in the next breath she is asking me to do things with that yearning look in her eyes, and so I say yes. Yes, as I can hear you all groaning, because I fear she herself is not long for this life, I can see the years have grown long in her face and her loneliness since dad passed of over two years now etched like lead pencil markings. These moments I spend of my time in my life will be worth it for when she is gone I will regret the times I declined.

Thank you Becky for rekindling me and encouraging me be back to being me. There is time enough down the track when I will have no choice other than to stop being me, that time will be when god has said enough is enough you have paid your penance and now you can rest.

Today I will be me, tomorrow I might be someone else, it's a strong possibility, these damn drugs can make me be anybody aye that's for sure.

Eva, you are so eloquent in your verse, you hit the nail on the head every time, thank you, thank you, thank you.

I'm sure am blessed to have found NT and the group of people I have connected with in such a short time. I read our stories, our notes and our comments and I marvel at our resilience.

I heard my husband talking to his dad last night about his nieces ex partner (nephew in law) who can't get his backside off his chair and get out and get a job, he owes £14,000 in child support back pay and now that CS are finally formally involved, he has to pay her £300 a month and is moaning about it saying he can't work. It makes his blood boil when he hears things like that when he has a wife who can hardly walk that wants desperately to get out there and work.

Illness has defined us, it has made us stronger and dare I say it, better people. Yes we could all have done without it, oh goodness yes, we could all have done without it. Yet here we are, encouraging each other and supporting each other through the hard times and the harder still times.

Well done to us

Pam, Becky, Eva, and all of us who are doing whatever it takes to get thru each day. So well said. Thank you.

Often, it is because of our loved ones that we try hard to keep a smile; while holding back the tears.

I, for one, look forward to the reward at the end of this "journey" we are on.


Gerry

Sad news
 

I'm feeling so sad, the wonderful lady I shared a hospital room with just before Xmas, has passed away. Her cancer too far gone, it took everyone by surprise, we were both discharged on December 21 and she died on December 30. We talked for hours and hours throughout the 4 nights and days as neither of us could sleep and the pain meds kept us awake. I sent her a text yesterday asking how the treatment was going and her lovely husband rang me to tell me the sad news, we both cried and cried. She is at peace now I know, but taken from us far too soon:(:(

Boston paddle
 

Right that's it, it's not working. The nerve block on whatever vertebrae he did gave me 5 days relief maximum. On Monday I thought this is working! Yay, I felt great, even good enough to get some walking on the go. For 3 days I walked 30 min each day and felt fab with the pain on the left side gone! With the other pain on the right hip, the thoracic, cervical and left hand still there I did get into the swing of it.

Yesterday the pain on the left hip returned and the left hand pain today is ZINGING, I know on Monday when I talk with him he is going to want to do the nerve block on the next vertebrae up and I'm really hopeful it will give temporary if not full relief again to the lumbar region but, what about the thoracic throbbing, the cervical knifing and the left arm/hand zinging. I crashed again yesterday and had to take the dreaded Xanax again, I want this drug out of my life. I accept the oxy will have to remain, I've been good and taken the increased dose, well not all of it, I've gone up to 40 slow release a day, not the 80 to 120 prescribed because I'm really wary of yet another bowel obstruction.

I'm starting to think the problem is the Boston rep is not wanting to play nice with my Nevro rep! because once the paddle is in, even though it's a Boston paddle, I will still apparently continue to work eith my Nevro rep. Or maybe I'm being judgemental, maybe my rep is working with the Boston rep to learn all she can about the product so she can then manage me!? It just seems so strange it's all gone quiet on that front. I saw my rep last week when I was in hospital and the chap she had with her seemed to think the one lead is working? Not sure how he can even come to that conclusion. If I'm needing the nerve blocks and the pain is still there then even blind Freddy could see it's not working.

Maybe my being in pain is making me impatient, or maybe it's the thought that I might have an option to release the pain and it's not forthcoming as quickly as I'd like. Argh so frustrating.

Mark, if you reading this, I read one of your posts elsewhere, hugs, hugs and more hugs to you and yours. You surely are being tested my friend and I'm so very sorry. :hug::hug:

temp relief
 

Once you get relief then you will be on that rep....trust your guts and speak your mind.

keeping you in my thoughts

HB

Wow !! that really had to be a shock. Did she seem to realize her cancer was so far along??


Gerry

Pam,

I am so sorry to learn of your continuing issues. Hopefully, the reps will get their act together.

Believe me, i understand your reluctance to take the oxy; expecially because of the constipation issues. In 2012 wound us in the ER because of being impacted. Since I am on Oxycontin every 6 hrs (240mgs total daily); In an effort to avoid this happening again, I now take the Miralax twice a day (1 full dose and one half dose). It does make going out very iffy; but for me, the pain would even be worse. I also take Vallium which really helps for spasms/anxiety. For sleep, use Ambien CR. It is a lot of meds; but at least the pain is more tolerable; without them pain would be much worse.

You have so many areas to deal with. I am really gald you have a place here at Nt to be able to share and discuss what you are going thru. You express yourself so well.



Gerry

No
 

No Ger, sadly, the cancer had progressed. This we knew, but had no clue it was that far gone and her death imminent, and they paid $19,500k up front for this new treatment regime on December 22nd (its not available in the public benefit health scheme) to commence. She had just the one treatment and I'm sad, so sad she had to endure all the toxicity that goes with the treatment in her final days. No one would have opted for that had it been known just how far gone she was. We talked about the treatment and feared it would be harsh. The money is irrelevant in the big scheme of things, just harsh that with payment accepted and the mix prepared it so raised their hopes only to have them shattered within days. A cruel reality sadly so many have to face. Yes, it truly was a shock, even when Brian phoned, I thought he was just going to say hi and pass the phone to Barb. Score once again for the reaper.

Thanks Pam,

That touched "home" a bit for me. I had cancer surgery Sept., 2012. My surgeon had recommended I see an Oncologist and a doctor for Radiation treatment. I had told him I did not want any treatment. (lympnodes were clear; but the tumor that was removed was fairly large). He said he was "okay" with my decision; but first he wanted me to talk to the above doctors and if I still felt the same; at least he felt I was making an informed decision. He said when I came back for my next appointment, he had wanted me to have already seen both doctors.

I did as he suggested and saw both the Oncologist and Radiation doctors as
suggested. I still came up with the same answer; "I did not want to go thru treatment". After I told him this; he said I would have been very very
sick had I had treatment. He wouldn't say this to me prior to my seeing the doctors. He at least felt I was now making an "informed decision" and had not wanted to influence me either way.

I just feel all too often many go thru awful side effects with the hope of being cancer free. Much of their decent time is used up being terribly sick from the treatment.

I read an article a while back that mentioned research done on many cancer patients. There was a large % that thought if they had treatment their cancer would be cured. This article mentioned ...all to often doctors give patients hope and need to be more up front with them giving them a better idea of what lays ahead and how good their chances were at curing their cancer.


Gerry

Up front
 

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. :grouphug:

Pam, a big part of my decision was exactly what you mentioned. With this 24/7 pain and doing/taking whatever I can get thru the day is not one that I am looking to add to with Chemo (especially 6 months of nausea ).


Also the Chemo, as the Oncologist I saw was very nice; did say if I did the Chemo; there was a good chance one of the side effects (Peripheral Neuropathy) would get worse.

I, like you, do not lay down during the day; but do look forward to bedtime when along with my pain meds, take
Ambien Cr which does allow me 5 or 6 hours of pain free sleep . Tho I do dread most mornings getting up and facing another day.

I do believe at the end of this journey we are on; we wil have our reward.



Gerry

Amen! and AMEN!
Beautifully said, Ger :hug:

Agreed in all ways possible...... and that is no fluff! :cool:

Blood tests
 

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.:(

Pam, I'm so sorry to hear about all of the trauma you've had to endure ... I am hurrying but wanted to at least say that I am saying my prayers are for you to heal well now with the strength of those antibiotics and all resources available to you... :hug:

Hana

Feeling Poorly
 

I rang the blood pathology to ask if I needed to make an appointment, a very nice lady answered and she said you don't sound well, what blood tests is your Dr asking for. I told her and she told me she will be arranging a home visit and someone will be here first thing in the morning to take my blood.
Wow, I didn't realise they did home visits and I said as much, she said we do when necessary and you don't sound well enough to be driving. I'm so pleased someone will come here and I don't have to take myself, because I'm really struggling today. Very surprised about home visits and, well, I must sound jolly awful.:eek:
But, my faith in humanity restored, what a lovely lady! :cool:

Pam
 

I understand well the range of emotions, isolation, fear of rejection by care givers, strain all of the above places on the family...... and having experienced this I share a feeling of coming alongside you to provide hope this will pass into history and your life will come back...... maybe not quite what it was [this I have learned up close and personal]..... but features to demonstrate it is there for the living will return.

Prayin for ya and dispensing hugs,
May all be well,
M56 :hug:

Disc injection
 

Hi folks, I got the call on late Tuesday afternoon that my PM had a cancellation and they could do my procedure on Weds if I was available. Yes yes, of course I was. My mum took me in at 12.30 and at 2.15 off to theatre I went. On coming round my PM came to me and said he had found something. I'm waiting now to hear from them as to what it is they found, part of me thinks it will be what we thought all the long that a fusion to L2/3 will be needed. Anyway, at least things are happening. My bloods came back normal and thats good news.:winky:

Pam,
 

Glad to hear you were able to get in today. Did the doctor give you some idea when he would would get back to you with the results. You probably know your body best and a good possibility you are right about the fusion.

HOpe you don't have to wait too long until you hear from the doctor's office.



Gerry

Oh Pam, what an unbelievable ordeal!! :eek: I am so so grateful that you do not have to wait any longer... and hope the news isn't that you need another fusion.

Prayers are with you for healing right up! :hug::circlelove:

pain relief etc
 

oh so happy you got in early....ahhhhhh pain relief.

Holding the faith with you...yikes...fluff got out....stuffing ---stuffing it back.<<<<where is the whip? GOT it...taking it to where it belongs.

you are pretty spot on about your body and the "wait" for the call gets easier too after all.

looking forward to the update

HB

WOW !!!! HB, couldn't have put it any better.....you have a wayyyyyy with words.

Waiting to hear from Pam; hopefully soon.


Gerry

I'm so tired today
 

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 :grouphug:

Oh my dear, I'm so sorry...:(you have had to endure too much! Already your body and you need as much TLC as is available..:smileypray:. Yes, do not pay attention to your vitriolic nasty relatives or ANYONE with those attitudes. I wouldn't let them into the house right now and Don't walk, run the other way! :OuttaHere: OHHHH>>> Burns my bisquits!! :sorry: I'm so grateful that you can share this here and get support you really deserve. You know, some people just don't, and therefor wont get it, or us. I shudder when I imagine anyone so mean that they don't "want" to get it or be supportive. Oh, this post may be primitive and ugly but I had to respond and let you know we care!! You are not alone... call on me anytime. I'm off to my pain psych appt... the 4 hour drive, 2 hour wait for the 2nd appt,...so, got to go now. :( Yep, all we can do is keep on going, finding our own rhythm and song...

Rest and heal today... be in good company.:hug::):grouphug:

Pam,
 

In spite of not being in a "good place"; you really accomplished quite a bit. Being down really doesn't help the energy level either. Bed must have seemed a place to retreat.

I know it's easier said; but if possible, you need to cosider the source (your sister-in-law) and realize she is the one to be pitied.

Keep on singing.......".sing out loud, sing your whole life long"............


Gerry

I so relate
 

Pam,
when I am shattered ...I retreat to my garden....cuddle my pets...and also sew....things to me like that are meditative...my mind slows...I find my center...innately you nurtured yourself...good job!!

Do hand make that gift for your sister....your creation will be so treasured...trust me on that...

To help myself when I had evil thoughts about my family who abandoned me......soon as they entered my head I caught the thought and said my favorite prayer...then after about a week of plenty of praying ...I could say a short prayer and I love you...(because that did not change) and now it does not hurt near as bad. I feel compassion for them although I will never be with any of them without a therapist between us.
I am so sorry you have been hurt on that level...it is deep pain just not needed to be piled on us..... go easy on yourself.

HB

It hurts
 

Thank you all for your understanding, I know sadly that far to many of us have had to stand up for ourselves and our dignity. It hurts me that I can and will put this behind me! but, I feel for my poor husband, for it is his sisters not mine who are causing the upset and it has hurt him deeply that his one sister in particular could be so cruel, low and undignified.

She is a vicious woman with nothing better to do. I'm glad I don't have to see her any time soon. My husbands younger brother and his wife endured the same treatment from them a few years back. Now I know what I know and I should have known better than to let her in and spread her poison into our lives.

I can pray for her and this I will do. :eek:

Pam,

When I mentioned your sister-in-law was to be pitied; I almost added and needs prayers. I was glad to see you are going to pray for her.

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

He won't talk
 

He is hurting in a way I have never seen before. We have faced years of illness and I have always tackled it head on. Actively participating in events to raise money for charity, doing bike rides, running, raffle tickets etc. His sisters comments were mean and she added in for extra effect his mother didn't like me. I can hold my head high and say I loved your mum, I know her last words were I worry for your sisters, she knew what I knew, poisonous souls fester and rot and nothing good comes from them. I guess it's why he won't talk of it. Yes, my prayers are for him now. I've said them for her. He is my rock, my life and my essence for being, I am grateful to have him in my life.

Pam,

I am glad you were able to put all of this in writing to us on NT. It is out..out..out.. of your system. Don't even dwell on these hurtful, pitiful women any longer. Your husband is a "gem". Letting him know you realize he is nothing like them, and that you are proud to be his wife is most likely all he needs to hear from you.

Keeping both you and your husband in prayers. Enjoy one another.


Gerry

Newbie-hope I'm in the right place
 

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.

Depression
 

Hi, your description of yourself mirrors that of me and Chreslry we both have Nevro and lived active enjoyable lives before our never faraway pain companion overtook our ability to control it. Depression came along and it seems the two decided to become faithful companions! For me, having the implant I so hoped I could, and would, become less needing of the medication oxy. It hasn't happened, in fact now I am supposed to take more than before but every day where possible I take only the old dose and I know that is bringing me down because pain, constant pain is depressing. When you can't do the things you used to do, that just hurts emotionally.
I guess the only thing I can say is the SCS is only supposed to provide up to 60% pain relief! my rep and PM both said it won't take me off meds, and it won't fix what the actual pain problem is, it's only another method to try and tell the brain you are not hurting. Pain is sneaky I think, I think, IMO the pain beast has learned to move to somewhere else nearby to let my brain know it's not gone away, it's still there and that something is wrong, there is something there that still needs fixing but surgical intervention hasn't advanced enough to know what it is or how to do it. And that just sucks, I've still got private health but come August our income will be less and I'm not sure how long after that we will be able to afford the insurance premiums we currently pay to give us both top cover. So I can understand your concern with the NHS. When I was in London and before I got private health I was at the mercy of NHS and, looking back, tbh it was a real hospital merry go round so I can understand your concern. Do try not to let it bring you down, on here you will find many of us who face the same uphill battle as you, we have banded together from across the world. You will meet many from the USA who have different SCS units, but, similar stories. We are a pretty good bunch of people who totally empathise with you. If you groggle some of our stories you will see what I mean. I'm glad to meet another Nevro person and am interested to hear more of your experiences and stories. :o

amen
amen
amen amen amen

you dear beautiful lady
your pain
understood
as you spoke of the dr.
hitting your sweet spot
let alone do it again
and not kick him in the nuts
i understand
and pray for a miracle
third orthosurgeon
"i will not do any surgery
as to many things are going on
it wouldn't help"
again my friend
we are chosen and are special
my love of our Father
Brother
and Mother Mary
our Angels
when i am strong spiritually
everything else means not as important
and the love of our children
my granddaughter
and someone i miss terribly
just terribly
my dog Oliver
my eldest has him
i hurt so badly missing him
Gods creation
blessed are we in that strange
but understood love for one another here
UNCONDITIONALLY
oh the thaught of that worn flannel
shirt drenched with the smell of Love

be well
as well as can be