Muchas gracias mis amigos
 

I just had another thought, Sophie...we were talking about this very subject over on the PN board here: http://neurotalk.psychcentral.com/thread153919.html, and mrsD said something about drinking lots of water because your kidneys need to excrete it.

Chug-a-lug!

Sophie how could you sit and wait to see your GP for two hours:eek:

My GP has been our Dr for years. So as sson as he knew how bad I am suffering he will give me an appointment before he actually starts his surgery. That way I only have to be there for as long as the consultation takes.
Maybe you should ask your Dr to perhaps make an appointment before he starts? Just a thought. Because two hours for me would have me flat on my back :D

Jackie:hug:

Lay on the Floor
 

When I was pre-SCS and could no where near sit as Sophie was required to do so, I would lie on the floor. Doc's don't like patients lying on the floor, so I would get moved to an exam room where I could lie on the exam table, at least it was cushioned a bit better than the floor.

Mark56:mad:

Hi guys,

That's a good idea Mark, I did lie on the floor when I was the teenager that no Dr would believe! Thankfully my GP did say to me to call down at 8.30 and he would see me then. The reason why I didnt do that in the first place is because the receptionist told me he had to stop doing that has lots of people were doing it and it was pointless!
I guess next time I will ring him and let him know I'm calling, I have his mobile number.

Thanks guys for your suggestions

Sinead xxxx

By the way ... paddle lead arranged when Jeremy can fit me in one of his free theatre slots. He's off for two weeks this month so it's likely to be October. :D

Oh How I Hope The Paddle Works
 

Dear Saffy- May your ultimate receipt of paddle do what you need as you receive it! My experience with paddles has most assuredly been THE ticket for me. No slippage on my end. SO..... if, as, and when you receive this solution to your need, my prayer is that you find the paddle WORKS for you!!!:hug:

Prayin as you are waitin,
Mark56:hug:zzzzz

Hello there
 

Hi Karen,

Its funny how the same technology hadn't worked for either of us but I'm delighted that you'll finally get sorted and before I have this next implant I'll ask again about paddles, the way I see it is they might as well do it right the first time and then there is no need for all this pain and silliness afterwards.

Happy for you hun

Sinead xxxx :)

I had a really good talk with Jeremy, told him thatbthough I had told myself to be realistic about the pain relief of a stim there was that little bit of HOPE that it would do more.

Now I know for sure the stim will not cure the pain and yes,i will no doubt still need meds so I am telling myself I won't be returning to full time work ..just in case, this might realistically work better for me .. The paddle I mean.

Then if I do manage to get work, it's a bonus. But I'm not going to put pressure on myself any more. My husband doubts I will go back to work as I can't say from day to day what state I will be in and the meds make early mornings an impossibility. (the only reason I am awake now is because I have had a massive flare up in these last three days)

I have a disabled badge which allows me to park nearer to the shops when I am able to get out .. A god send. And of course, I have tootle, without who I would be confined to the house.

I can't wait for my stay in The Hotel Hallamshire as I call the hospital. Lovely people and a wonderful hospital.

Hi Karen,

That's a good way of looking at things, if it happens you can go back to work even half time it would be great, what did you work at if you don't mind me asking? I too have a parking permit and it's a godsend for when
I'm in bits but in saying that I haven't been to the shops in ages, every weekend I think yeah maybe I'll be able to this weekend but nope it just won't let me, the pain that is. What's a tottle? I've never heard of that one! :D
I guess I'm lucky in my job that I can work but by God it's really difficult, I come home in the evening and all I want is to lie down and sleep. This sickens me a bit as before all of this I'd come home and I couldn't wait to go walking or swimming. That's life!
We will get there and I'm so happy that you have a time frame for your paddles, did you have any hassle with Bupa covering it? I'm with Aviva and I'm
thinking I might just give them a call and ask them myself if they would cover the new implant?
Chat zoom

Sinead xxxxx

No .. BUPA wont cover any form of SCS because it's not a cure as such. I'm on the good old NHS !!

So tired today .. have had bad flare ups and whilst I am trying desperately to not have any stronger painkillers, the ones I have do nothing really ... the Tramadol possibly hazes me out a bit but I remember you saying Sophie, that it gives you a dry mouth .. me too !! Been on Diazepam the last few days which depresses me ... and I do need to see the doctor about my meds as my husband pointed out that they gave me Diazepam when I had post natal depression with my first daughter (on top of Tamazepam) and I was suicidal .. I'd forgotten all about that.

Anyone want any .. I have loads !! lol

Got another journey to Eastbourne on Wednesday and back Thursday .. that's another 9 hour round trip if we're lucky ... the third since June. It's a killer, but at least it wont kill me, like the cancer is killing my father in law.

Then I am just going to put a bag over my head and sit in a corner and pretend I'm not there.

Oh Saffy.......
 

You make me want to grab Cleo and bring Talon along to meet Tootle, then give you big hugz because you are so LOW. You make tears accumulate in my eyes. This awful sense that pain is overwhelming you and waiting for NHS to address things is just plain inhuman.

You are well and truly in our thoughts, in our prayers, and hopes that sooner than later help comes your way.

Oh, how I know, SCS is not a Cure for pain as it is only a pain management technique. The pain is always still there as I know well from turning down my unit from time to time to check things out.

Prayin,
Mark56:hug::hug::hug::hug:zzzzzzzz

Hi Saffy,
Gosh I didn't realise your father in law was so sick, of course the stress from that alone is enough to increase your pain and the worry of it all and of course your hubby is there for you and his Mam & Dad.
I take they live in Eastbourne, god love you, 9 hours in a car, I know I couldn't do it but then again needs must.
I've sent you a PM too.

Take care hun,

Sinéad xxx

Saffy I dont understand why BUPA wont cover your SCS. Did they cover the first one? Im with Bupa here in Ireland and I had absolutely no problem whatsoever getting cover and also when the faulty battery needed to be changed my stay in hospital was covered and also the battery.

The SCS isnt a cure as we all know it is just another part of our 'pain management' programme. I was told from day one that it wasnt a cure so Im bemused as to why they wont cover it:confused:

Could it maybe be your cover? Anyway I hope you get it sorted out sooner rather than later as you seem to be in so much pain

Jackie :hug:

It seems to me that pain ought to be considered a health-threatening condition all by itself. Because it is. And maybe you can't "cure" it in that you can't make the cause go away, but treating it is still beneficial to the patient's overall health. Do they view putting incurable cancers into remission the same way as this under your system?

Karen...
 

Been There Felt That
 

I must side with Joan, Rae, Saffy, Sinead, golly, the whole kit and kaboodle on the notion that pain no matter how it is perceived by insurance does work its evil way into a threat to life, most especially if severe [we all pass] and protracted over length of time [we all pass here as well]. Love of life can falter when pain is the only facet; it was for this reason the thread Blessings was started. As any of us look beyond ourself to others and their needs, we ultimately are able to number blessings and notice the positive side of life which has persisted all of the while.

Love to each,
Mark56:grouphug:

Hello my friends. I'm feeling a lot brighter today. I didn't have any Diazepam yesterday and took an extra Tramadol last night which, together with a couple of glasses of wine and only ONE 10ml of Amytryptilline that I found in a drawer, helped me have a good night's sleep.

I do think that Diazepam is the drug making me feel "low" and have just handed in a letter explaining this to my Doctor as I can't get into see her till the 14th. I've also asked for Zopiclone to take SOME nights when I need more than 3 hours uninterrupted sleep, as this is what they gave me in Hospital for sleeping at night and it worked really well.

Jackiey .. I can't believe you got cover ok for your stim with BUPA. I'm under Mike's BUPA scheme at work.

I'm going to ask my Doctor to put me down for Alternative Therapy .. and hope that Reflexology will count because it will relax me and do me good !!!

Keep smily folks ... x x x

Absolutely Saffy there was no problem at all. Thats why Im a bit bemused why they wouldnt cover you. So are you saying that the original one you had done is done on the NHS? I know here in Ireland you would literally have to be on your last legs(if you get what I mean) before they will do that operation on our Health Service.

My Consultant said that the public hospitals dont do them that often at all. Maybe one a year!:eek: But anyone who has private medical care can have it done obviously. So when it was decided I needed the SCS I was given two codes. One for the trial and one for the actual permanent implant. This was given to Bupa and they then came back and said yep I was covered for that and that I would need a Psych evaluation also. Both my husband and I have cover in our own names. I have FamilyCare cover. And as I said earlier everything was paid for. The stay in hospital (less excesses) the operations, the blood work, etc. Everything!....so Im thinking could it maybe be something to do with your cover?....do you know which cover you have?

So do you have to wait a long time on the NHS for this new one? or will they do it soon?

Im glad you got a good nights sleep. I too am on Amytriptelene nightly. 25mg I think they are, but have to say dont find them great, but I am a light sleeper anyway:rolleyes:

Hope you continue to have 'brighter days' too :hug:

Thank you for this loving reminder, Mark. :hug:
Sometimes I get off track and it's hard to see things on the positive side. It's good to be reminded of this....

Well .. the extra tramadol has given me a boost I must say .. albeit my mouth feels like the bottom of a bird cage it's so dry.

Picking up a Bird's Pork Pie later .. they only do them up in the North of England so Mike's Dad who is down south, misses them as he loves their taste. Last time we went we only took a medium one as we didn't think he would be able to manage much ... we thought at least he could have a tiny slice.

He sat there in the garden in utter bliss saying "This is heaven" .. and ate the LOT !

They sell out really quickly so have rung down and explained the circumstances and they have very kindly saved me one to pick up later once my night time meds have gone through my system. (I don't like to drive too early)

So Glad
 

You are feeling a mite better today Saffy. And being able to get out in Tootle to pick up the pie for Dad must feel good! Have a safe drive!

Caring!
Mark56:grouphug:

Pondering "Bird's Pork Pie"...and wondering if there is a parallel universe in which there exists a "Pork's Bird Pie"...and what would happen if they ever met...these time/physics/spatial theories always make my noggin hurt.

Anyway, glad you're feeling better, Saffy.

Hi Karen,

I think that contemplating things like that would make anyone's noggin hurt alot. I'm glad the extra tramaadol is helping, why suffer if you don't have to.

I hope the drive to Eastbourne doesn't hurt too much for you. Me thinks an extra tramadol might help there too.

Enjoy the pork pie, I think I've tasted it once!

Take care hun

Sinead :) xxx:)

Ray loved his bit of Pork Pie. Yay.

I am presently lounging in a lovely bed and breakfast in Eastbourne .. Two minutes from the pier and sea. Just about to go get showered and ready for my full English breakfast .. Yum yum.

Popping back for a couple of hours today before making our long way back home.

It's so good to hear the sea gulls in the morning .. And there is something so exhilarating and wonderful about the sea that totally re charges. My batteries.

The Lull of the Sea
 

Hi Saffy- SO glad you have been able to enjoy the sea, glad as well that Ray enjoyed the Pork Pie! So, I reckon Bird's is the brandname of the Pie. Perhaps there was a bit of confusion about Bird's Pork Pie. We are gonna have to throw a BBQ at your place sometime so we might sample Pork Pie!

Hope your breakfast was truly fulfilling!
May your trip back be easy,
Mark56:grouphug:

But was there bubble and squeak for the Full English Breakfast? Were there those broiled tomatoes? I like those too. But you can keep any of the sheep kidney variations as well as the black pudding.

Laughter, Good for the Spirit!
 

You, my friend, cause laughter and smiles similar to another dear friend on these here threads. Having had kidney, I do understand the hesitation, but black pudding...... I must admit you have me there! :ROTFLMAO:

Mark56:D

Saffy great to hear you have had a few days away at the sea...how wonderful....I hope you have had a good journey home, I know its not easy, believe me I know;)

Black pudding ewwwwwwwwwww cant stand the stuff, nor the broiled tomatoes either :D

It is Probably made with........
 

VEGIMITE!!

Mark56; o)

Black beans and Green Chili
 

Naw, black beans with just the right touch of roasted green chilis make a nice addition to the palate.

Yum,
Mark56:D

Actually jackiey it was .. Drive down for 5 hours .. Spend from 2 till 11 the next day then drive home another 5 hours, an absolute killer. If my father in law wasn't dying we would only do this trip once a year .. If that, because it's done more damage to my back. We have been down three times since June and it's killing me.

Right at this moment I can't even imagine doing it again, so I hope he hangs in there a bit more as I can't face another journey.

Hello there
 

Hi Karen,

I'm glad you're home all safe and sound so now you can rest in your own bed with an extra Tramadol and please God you won't have to drive thar distance again for a good long time. How long would it take you to drive to the sea where you are? Nothing like sea air I love it too! Is it possible to fly down so you don't have to drive, hire a car.

I must say I hada good laugh reading our Mark's, Rae's & Joan's interpretation of the full English breakfast! Bubble & Squeek, hate it myself but can you still get that with a breakfast? It definitely doesn't come with the full Irish and no baked beans either but I do love my Clonakility Black pudding (made with meat and cooked in cows blood, sound awful but yummy), white pudding, some back rashers of bacon and a sausage. Very nice but I could only have it when go away for a weekend. Not good for the waistline or the arteries!

I hope you're Dad in law comes throughthis awful
Illness,

Love Sinead xxx

Vegemite - you can't blame that on the Irish or Brits, Mark. I've never had that yeasty taste treat, and never plan to!:eek:

Black beans - love 'em. Can eat them straight out of the can plain.

Black pudding - thought it tasted like sweat.

I hope your father-in-law starts doing better Saffy. Sorry that this has been so hard on you.:hug:

Sadly he's only receiving palliative care and has signed the Do Not Resuscitate forms. He has his "Just in case" meds in the fridge and Pauline (his wife) received the hospital bed yesterday and he has agreed that it would be easier for him to have a catheter instead of tiring himself out getting up to go to the loo each night.

This last visit was heart wrenching. We'd only been down about three weekends prior to that 20th August I think it was .. and he was sat in the garden and although he went to bed, he got up later and sat waching a little TV with us before heading off to bed again.

Within a week the cancer gremlins had taken over and he is now still fighting, but a losing a battle I'm afraid.

I told Mike he had to go down this last week because it might be the last time he has a chance to have a coherent talk with his Dad.

He is sleeping a lot. Mike was content to just sit beside his Dad, saying nothing, just being there. Yet his brother who lives only 40 minutes away rarely comes over and his sister (Mike's siblings) who is unemployed and lives 15 minutes away hardly rings and only comes when she wants cash .. now Ray is in bed, she can't get the cash, so isnt visiting.

I think Ray knows how good Mike is .. and what a good son he is. He gave him his favourite watch on Wednesday when we got there ..

On Thursday when we arrived after breakfast, Pauline was in a state because Ray was staring to have an anxiety attack and she had put a Lithiumm tablet under his tongue as they said to do. WHen she woke his lips had turned blue and she thought at first that that was it .. but it was the die from the tablet. Also, because he wasnt drinking, the dehydration made the4 effects of the Lithium stronger, so on the Wednesday when we left, Ray was virtually unable to speak.

I hugged him and said .. Hey Ray, it's Karen .. he kept saying Sorry I'm like this Karen, sorry.

Thankfully, when Friday came around he was a lot better, so Pauline has now asked for something other than Lithium for the anxiety .. like a liquid that you wipe on the inside of his mouth then massage in?

He can't remember anything about Thursday other than Pauline saying RAY, RAY all the time .. and he remembers me kissing him. :)

It's totally drained me .. plus .. after 6 months I finally get a period ...yayy .. (sorry Mark ... girlie talk) and that's floored me.

Well understood Saffy
 

As the generation of our parents nears its close, it is hard, very hard to bear, and see the decline. My Dad is several years into Alzheimers, and is childlike in his relation to us, often wondering who we are. Gonna go celebrate his 80th birthday next weekend with him and Mom, a long drive, AND a drive I never would have made during the time of my most severe pain- a place in which you now find yourself. May you recover from this journey and reach equilibrium in handling your pain in the meantime as the exacerbation of travelling rigors wear off. I am so sad for you both as to the pain and the condition of your father-in-law. Praying for comfort for the lot of you.
Mark56:hug::hug::hug::hug:zz

Saffy that breakfast looks good!

...... I think I'd prefer to eat the CAN :D

Karen, I hold you and Mike up in prayer during this very sad time.
Your efforts and sacrifices are not in vain. I'm sure Mike has a very special place in his father's heart.
Just being by his side like you have been speaks volumes.
A time like this can certainly spark pain flares. I pray that this not be the case with you. Please get the rest you need, especially after the long trip.

My heart goes out to you and your entire family....
God's Peace

:hug: Rae :hug: