Signing out
 

Love to you and thank you for all your support. Am going through a terrible patch at the moment.

Trying to get my head around the fact that I can't get the SCS that worked for me airliner this year.

My husband is mentally torturing me and I know I should tell him to sod off if he hates me so much and is only staying with me out of pity .. But I'm disabled, can't work, have no money and funnily enough, we still laugh together.

:grouphug:

Overwhelmed with Hope
 

That life may
turn for the good
blessing you, our friend
far too long have you borne
the suffering heart which attends
pain beyond complete comprehension
SO
I
Pray
Mark56:hug:

Wishing I had the right words to say :(

Karen, just please don't shut yourself off and become isolated. That can create a very vulnerable and dangerous situation.

You've become like family here and we'll always be here for you if things become too much. Just know that you are a very important part of this forum. You've lived to tell the tale of just how frustrating it can be regarding the SCS. You've been through more than anybody should ever have to face, yet you've risen above each and every negative thing that has come your way.
You've shared so much of yourself with us, your heart, the pictures and video clips....you've let us into your world.

We'll always be here....
You'll always be in our prayers.....and
We'll always be caring.

Please keep the Faith,
Rae
:hug:

Karen,

You are very important to all of us. God's beauty is in the pictures you have shared with us. You are a very "gifted" woman.

There is much caring behind the laughter you and hubby share.

Please remember, you are an inspiration to us as well.

Praying,

Gerry

Though I have not known you long, I have appreciated all your help and sweetness! I hope you continue to check in and I wish you well. I hope you and your husband enjoy your time and can get past the tough spots!

Much love! Keep in touch! <3

:hug:

:):):grouphug:

just for right now
 

Saffy...we all can so relate to the depth of your despair in the above note to us. It takes my breath away I feel it so deeply.

You view it correctly....look what you said..."Am going through a terrible patch at the moment". We patch our lives back together creating the new "who am I"...our lives forever changed due to pain and injury. We move thru life now moment by moment as our bodies shift;heal;rest;not rest.

Just for right this moment let yourself beleive in yourself...just for this moment...you have been through terrible patches before...just for this moment trust you will make it through this one too...just for this moment know you are held in love and light..

We hold the faith for you dear friend,,,touch base with us when you can,,,Oh and laugh lots!!

Johanna*

:grouphug:

Johanna... YOU ROCK!!
 

Wisdom flies from your keystrokes as though winging rapidly to the eyes of those who need it most.
Thank you for sharing again!
mark56:hug::You-Rock:

Karen, I know how hard it can be when times get really rough and you feel like you just want to lock yourself away from the world, but that's when you need to surround yourself with people who care about you the most. You have many people here who care about you, and I hope you can see that. Hang in through the difficult times, because I promise things will get better, even if it doesn't seem like it now. Things are always at their worst just before they're going to get better, because the devil grabs a tighter hold when he knows he's about to LOSE. And you'll be able to look back one day and be proud of how strong you were now. :hug::grouphug:

Amen, Yellow!
 

VERY beautifully said :Heart::Heart::Heart::Heart:
That is the absolute truth.

The deceiver throws the hardest punch as a desperate last resort. Carry your FAITH through this.

Rae
:grouphug:

The snow has gone .. and I know I could go out on Little Tootle today but I can't be bothered. I think to myself .. go on, you'll enjoy it .. but you know, it's cold .. and I'm here snug and warm with a good book. So I wont feel guilty and will stay at home.

Oh dear .. well, spent Tuesday night in Hospital as I had procedures starting at 8am. They a joy, believe me .. pride went out the door, aswell as my paper knickers .. and I wan't even asleep ! The shame !

I've had waterwork problems so I was sent to see a Urologist. He was very nice, but I think he's seen more of me than my husband has this last year. haha.

First text was .. do you really wanna know? If you don't .. click off this post.

I lay on a bed and they stuck a catheter where I pee pee, then to add to the humiliation then stuck something up my bum holey!

THEN they filled them both with water and kept asking me to cough. I kept doing little coughs because I was scared of umm .. shall we say, messing the bed.

THEN, if that wasn't enough, the buggers turned the bed up so I was stood upright ... and asked me to cough again .. (i know how men feel now).

I emptied my bladder and they x rayed me which showed I was emptying properly.

You thought that was it .. didn't you .. ??

Nope .. worse to come.

Two easy bits a scan of my kidneys and bladder.

I was gaggin and they wouldn't let me drink.

Final thing was he put a cameral up my pee pee holey and had a good nose around my bladder for growths ... he was so excited he even showed me. (Oh, so i know what my bladder looks like inside zippy do!)

aLL IN ALL .. the good news is, no growths anywhere ... and I just have an over active bladder, for which he is going to try me on some pills.

The thing is, after that last proedure, sheesh, I felt like I had to worst case of cystitis ever for at least two house. Not nice.

I spent yesterday sleeping on and off because of the pain it caused in my back and I guess, the shock ! I did know what I was going in for, but it's a wee bit different when you're lay on a table with your lady bits on show.

So .. this morning I get a letter to see. Rob Atcheson and Donna, Rob is my pain specialist and anesthetist .. this is for Monday. Another letter too, asking me to go see my SURGEON in March. Surely this means they are planning another operation of some sort?

They would tell me at the first appointment on Monday if it wren't surely?

I'm all bubbly inside.

OOh I have another appointment on 12th Feb with a knee specialist as the cartlidge is hurtin in my knee and I don't have much movement.

Apart from that, I'm ok. So, so tired all the time. Wish I wasn't.

Love to all x

hugs and prayers
 

across the miles for you, our friend.
may all be well
i hope

hey there
 

so good to hear from you...
what an adventure!!!

it is good to "hear" you have a better outlook/perspective.
all my best as usual
Johanna

I phones the pain clinic to speak to Donna who is usually keen to talk to me. She told the receptionist to phone me and tell me to wait till Monday.

I phoned my surgeon's secretary who said it as just a routine appointment.

I am in two minds not to go to either as I can't see them being able to do anything ... Certainly no insertin anything into my spine.

I am so bloody depressed

Saffy,

You're not alone......been there....done all that too !!!!!

So happy to hear from you dear friend.


Gerry

Saffy,
 

I know your hopes were set up. Disappointment is understandable. Please keep your appointments. If not now; something may arise in the future to change the current status.

Whatever the issues that currently are making you not a good candidate at this time; may be for the better. The surgeon may feel you have issues that the SCS would either not work or possibly be more difficult to implant. But stay in touch with your doctors. Again, something may arise in the future to change the currrent status.
Go to your appointments.....pleassseeeeeee !!!!!


Praying,

Gerry

Hi Saffy! :hug:

Thank you so much for the updates. I agree wholeheartedly with Ger. Please keep your appointments. Sounds like you've got good medical care and they are checkin every nook and crevice to make sure you don't have anything 'mysterious' going on. No growths, YAY!

I'm sure alot of us can totally relate to the 'pride' issue. :o
I remember one Dr (older man) came in the room to give me a breast exam. Thank God the nurse was with him. At first he just stood in the doorway (barely even closing the door! :eek:) and said, "Well, the first thing I always do when giving breast exams is stand at a distance and get an overall 'view'. MWAHHHH?!! So, there I sit, bits hangin out, the air was SO thick with 'awkwardness' couldn't hardly breathe.
That was actually creepy :rolleyes:

I won't go into the other ones....but yeah, I sure know the feeling of being a butt-neked PIN CUSHION!

You're always in my prayers, Karen, especially about the depression bit.

Caring Always,
Rae
:hug::hug:

Hello me ducks, well tomorrow's the day when I see my Pain Specialist who is also an Aneathatist (however you spell it). Apparently he wanted to see me because he is leaving the Pain Clinic to concentrate on other things.

The appointment with the surgeon is the 28th of this month ... so not long to wait either.

I feel really sick with nerves ... they were going to look into that thing where they drill a hole in your head and get to the part of the brain that works the sciatic nerve I suppose ... I did ask the surgeon at the time, when he was telling me why he couldn't possibly get anything into my back because of all the scarring .. and he did say, "that is a possibility".

I'm trying to keep those tummy bubbles at bay .. but doesn't stress like this, on top of pain, make you tired?

I am so, so tired all the time. I could stay in bed all day dozing on and off and have to force myself to get up .. then invariably am so tired, go back to bed.

It's nights I find hard, as it's the only time I see Mike really and he's back from work at 7 and I'm in bed at 8.30.

Ah well .. I will let you know how I get on tomorrow one way or another ...

If they say they can't do anything, I'm booking a bloody holiday!

You are loved immeasurably here Saffy, and given the time variance, it is now the morning of your appointments. Go. Please. Gerry is correct. Follow through. Push buttons. Get answers to the best possible.

and

we will be prayin
m56

Saffy,

I think no matter what......TIME FOR HOLIDAY !!!!!!!!!!!!!!
Start planning........ That will get you out of bed and looking forward to
a change in scenery. Maybe you and hubby can even hold hands. Now
wouldn't that be a "tootaley toot"
---------- --- (just made up the word.)

With Mark on the prayin,

Gerry

Well Tootaley
 

A good word Tootaley, so Gerry, you take the "make 'em up, spread 'em out" award for great ingenuity and wondrous inventiveness sparked by innovative percolations department.:winner_first_h4h::winner_first_h4h::wi nner_first_h4h::Clever::Clever::Clever::circlelove :

Yup, now we just have to get Saffy and Hubby off to Greece!:hug::grouphug::hug::grouphug:

Mark,

I have never in my life received an award so descriptive of the qualities I possess. I must thank the "innovative percolations department" and all who may may have
played a part in my receiveing this award.
Gratitude indeed !

This is a very stressful time for Saffy. In the meantime, Hoping to hear Saffy's holiday plans.

Prayers in all things " possible" or " impossible".


Gerry

beautiful so beautiful

PLEASE MAKE THE APPOINTMENTS
SOMEONE WHO CARES
SOMEONE WHO'S HEART FEELS
YOUR PAIN AND FRUSTRATION
AS MANY HERE DO
I AM A SLAVE TO MY MEDS
HAVE A SHRINK TO TALK TO
HELPING ME THROUGH A WAY
I CAN FORGIVE AND MOVE ON
YOUR INPUT IS VERY IMPORTANT TO ME
AS MY LAST MEYLOGRAM DIAGNOSIS
RSD AND EMPHASIS TO THE LUNG
EMPHYSEMA STOPPED SMOKING
OVER A YEAR NOW GO FIGURE
I DID IT TO MYSELF
I AM AFRAID TO HAVE ANY SURGERY
OF ANY KIND THE HICCUP IN THE
ROAD AFTER THE 2 CERVICAL NECK
SURGERY THEN BREAST CANCER
BOTH BREASTS WERE TAKEN OFF
LUCKILY I FOUND IT AND TOOK
IMMEDIATE ACTION STILL GOING
TO DOCTORS I AM SO DONE ALSO
BUT WE MUST DO ALL IN OUR POWER
may you be well

take that get away no matter what
lots of love and prayers

I think a get-away is a PERFECT idea!
You've done wonderfully with the other holidays you've taken and this time seems even MORE necessary than all the others combined!

You've been through too much. It's time to shake loose and enjoy another part of the world!
Course, we'll be expecting pictures when you get back! :D

Rae
:grouphug:

Passport Packed
 

Ready to go!

Now................go

I'm so regretting giving up my car at this moment. My daughter is at University at Keele and was rushed into hospital last night with suspected meningitis. I sent a text to my husband .. phone is here at home as usual and I can't get through to this work.

Have just had to e mail him.

The paramedics started Hollie on Anti Biotics straight away .. she's being admitted and having tests done. I'm just praying it's nothing too serious.

Prayers please.

oh dear
 

Just reading this...thinking 5 hours ahead of me...noon to yu ...praying you are with Hollie now...sending comfort/support on a ray of light.
Do let this "prayer calvary' know.
Johanna

Praying in Earnest Saffy
 

Oh Saffy, how very VERY frightening to learn of Hollie's situation on top of your own. Prayers are winging!!

:smileypray::smileypray::smileypray::smileypray:

Henoch Schonlein Purpura ... this is what she has the latter ... a rare auto immune condition that can be deadly if it effects the kidneys, but hopefully Hollie will fight this and if it returns, fight it again.

Enclosed, see pic of her leg ... she is now walking around like us as it has given her arthritis of the knee and ankle joints ..

http://http://lh6.googleusercontent....86E4E55AAC.JPG

http://https://picasaweb.google.com/...N_kp7KiiOXm_gE

This might work

Oh my! I'm so sorry to be reading this!

Praying that your daughter will respond well to the meds and that everything turns out well. Praying for you too, Karen, as you support Hollie in this battle.
Thank you for sharing this, as you know you've got all of us prayer warriors here!!

Rae
:hug:

Saffy,
 

Thank you for bringing your daughter's condition to our attention. Sounds like she is getting the much needed treatment in time.

Along with all you have going on; know we care. You have touched the hearts of so many of us. Please keep in touch and let us know how you and your daughter are coming along.

Love & Prayers,
Gerry

Prayin
 

Of course, prayin.:hug:

hmm
 

Praying Hard!
nuf said

Agreed
 

Yup:):Bow::Bow::Bow: [oops, wrong one] :smileypray: :smileypray:: smileypray:

Well .. she is still covered in the rash which looks awful .. and has arthritis in all her joints. I spoke to my Doctor and she was very concerned and told me that she should be having weekly blood, urine and blood pressure tests, to check kidney function .. I'll just talk to the wall. What can I do? She's 21 ..

We wanted her to come home and she would have done but is being forced to do two semesters in one because of having to have time off at the beginning of the year due to the stress of knowing the guy who sexually molested her got away with just a caution.

I'll stop about Hollie now because I just get upset.

I managed to get to the Doctor but it took me 46 minutes to walk from my house on crutches to the bus stop that normally would take less than 4 minutes. I was in agony and frozen walking up to the Doctor and four older people stopped to ask if I were ok (In't it funny how the young would perhaps like to approach you, but don't)

Anyway, a lady was getting another lady on crutches into her car and came over to me and asked if I needed help. I said I was going to the Doctors which was just up the road 2 minutes away. She said "Get in the car" ... and proceeded to take me to the doctors and then prayed for me, which I was really touched about.

My Doctor went mental at me for coming out in bad weather. She said this is the second time, what are you trying to do, break your back? I said my husband had said something about walking and so to be bloody stubborn I had done. She said I was obviously full of anger .. which I am .. because despite reading my Consultant letter saying that no wonder I am drugged up all the time and have memory issues because I am on so much medication, I still feel guilty that I am so, so tired all the time. (At which he also said he wasn't surprised)

So the deal now is to lower my medication and they are having a meeting re this Dorsal column ganglion thing. I am hoping that when I see my Surgeon on the 28th, he will have more news for me. Fingers crossed.

Have had an ok today but slept nearly all the day as I am on new tablets to stop my irritable bladder .. says on the box .. can cause drowsiness ...you bet it can. I am exhausted and could quite happily stay in bed all day sleeping on and off.

i'm so sorry
 

dear friend

i'm not in the direction of pity
you understand my concern
as someone who is a slave to
too my medicine i have been
thrown into withdrawal too many
times since "Sandy" and
and will avoid

Saffy,
Thanks for the update. That was really risky going out in your condition. With the anger issues, it is you that would be hurt most. It's just not worth it. Please be good to yourself. I know you have been given so many ups and downs.

Too bad your daughter has so much to deal with as well; but you can't put it all on your shoulders; it is too much for you. As you say, she is 21. Unfortunately, the man who moldested her got away too easily. Pray both you and your daughter can deal with this. It is tearing both of you to pieces. He's just not worth it.

Now wasn't that a pleasant surprise. Do you think that was coincidence this nice lady drove you the rest of the way to the doctors. Especially her praying with you. I do believe "conincidence" is Jesus' way of remaining anonymous. He was there with you all the time.

Meds are rough. I am on a high dose of Oxycontin and percocet; but without them making it thru each day would be even more difficult. I guess each of us have to decide what is most important in our lives. I do try not to lay down too much and keep busy because, as you know, they can make you sleepy. Although, I am lucky, the Oxycontin does not seem to react that way with me.

I Sure hope the surgeon's appointment on the 28th will bring some good news. ''
Let us know how it turns out.

Love & Prayers,
Gerry

Hey my Saffy Friend
 

Reading all of the stuff which makes one angry made the moment of your rescue by a prodigious good samaritan JUST THAT MUCH BETTER!!! Oh to be lifted up so by one who then prayed for you captures my heart with the "want" to give you a huge hug.:hug::hug: [Well, when Rae comes on, she will have the appropriate graphic, always does....:)].

I feel happy for you the meds and ganglion block are coming into your doc's scrutiny as to the need for proper consideration. May the RIGHT thing be decided to help you..... and may God shower you with blessings. Profusely.

Hollie- I just feel so concerned for her and pray all will ultimately be well for her.

Love and Prayers,
Love and Prayers,:hug: :hug: :hug: :hug: