Hi Bouncybabs!
 

I can't tell you how much my heart hurts when I read your stories of the pain you endure and the attempts you make to live fulfilling lives. As y'all know I don't have CRPS, I'm stuck with chronic lower, upper and cervical pain, fibromyalgia, PN, a dodgy bowel, a compromised immune system and these never ending headaches.

I try, I really try every day to be positive and to start to do things to live a life. I'm only 52 and I'm determined to prove them wrong and be able to work again. In August my minimum wage superannuation payments will stop so I need to be well enough to be able to get back into the workforce to relieve some of this burden from my husband as I won't qualify for disability due to his income. I'm waiting on a cancellation appt to get into see my PM as the scheduled June 6 is too far away. If I need to have another spinal fusion or the Boston paddle and laminotomy I really would like to get it done while I can still afford hospital bills and medication etc.

I'm over, totally over feeling blue, sore and sad. So I've gone mad and booked tickets to go to the football this Sunday to see our footy team, no clue how I'm going to manage the train journey, the stadium walk and staircase to our seats, but at least we are not up in the nose bleed stands... It will be worth it to see my husband smile, I will as usual have my walking stick and if the crowds (expecting 44000) are pushy i will stand back and make my way after it begins and finishes. And then on Tuesday I've booked to go away down South for 3 nights to my birth town and stay in a lovely B&B self contained oldy worldy cabin that has its own spa so taking champagne, chocolate and cheese. The great news is the local hospital where I was born is only 200 meters away so Lyndon feels it's manageable lol.

I just had to do something, I can see him slumping further and further in the depths of depression as he struggles to accept he is the main breadwinner and I may never return to work. I'm praying I can just get these procedures done before August and that they will work. Something has to go our way sooner or later. I used to be so house proud, now its all I can do to clean the bathroom, kitchen and make the bed. We have a biggish house and I can't do anything outside other than water. Running the vacuum fills me with dread and dusting is so over rated ha ha. Today I've dragged the vac and all the cleaning materials out and tomorrow first thing as soon as I've taken my meds I'm starting. Lyndon will leave for work at 5am so I can begin before it gets to hot. That way the house will be clean for when mum comes for her Friday night roast that I cook and it will still be clean enough for her to stay here next week and mind the pets. Amazingly family members who always rely on me to help them out when they need it are unavailable. Gee what a surprise!

Ok as you guessed, it's going to cost money, too bad, I will scrimp on something else. I rarely go out and in comparison to what we used to spend this will be bottle tops. Hmm maybe I should make it beer, cheese and nuts instead...:eek:

Pam
 

I feel your pain - literally. I understand the cry from the depths of your soul to LIVE. Good for you for making plans for the game, and to travel back to the town where you were born. I will be praying that during both of these outings - each with their own unique challenges - that you will be kept safe, your pain manageable, and that these times will bring a ray of joy and happiness into your days.

I understand, too, how hard it is to clean. Vacuuming is so hard - but when I finally dragged mine out one day last week, all I could see was the dust and dirt, and I began cleaning with a vengeance - even vacuuming the dust from the ceilings. I paid dearly for it for a couple of days, but I can't stand a dirty house, yet I also can't bear the pain that it causes to clean it . . . so I have had to let some things go. I agree - dusting is WAY overrated! Haha!

My birthday is in 10 days - I will be 50. As I look to the future I want so much more. This was supposed to be the year everything turned around - SCS is in place, diet is almost finished (yay!), I was going to be able to start pulling my weight on the farm with the chickens - as well as with the new miniature goats we are getting this month (another yay - they are so cute!). But the challenges just keep coming. I'm frustrated - my leads may have moved, as I tend to lose connection frequently - my rep wants me to get an X-ray to either confirm or deny that reality. Also, my pain management doctor has decided that now is the time to wean me completely off of my pain meds - even though he knows I'm having issues with my stim and that my pain level on a good day is a 5, and on a bad day a 7, with more bad days than good. He said that once I'm off completely, we can determine if I perhaps need to go onto a long-term, more effective pain med. I understand his reasoning, but I don't understand why not just make the med change instead of insisting that I be off of all pain meds for a month. What value is there in me being in so much pain? What will that tell him? How will that help? I'm frustrated with the process, and with a doctor who can so easily dismiss my pain by saying, "I know you're strong - you can handle it." But I'm not "strong" anymore - chronic pain has a way of sucking that strength right out of me, and as I gradually wean off of these meds and my pain increases, I continue to dread the weeks when I am not on anything at all.

But in the midst of pain, a dirty house (*smile*), etc., I have to remember to redirect my thoughts, my eyes, and see all of the blessings. Our middle daughter is a week-and-a-half past her due date, so that means that any day now (hopefully!), I will have another sweet little grandbaby to snuggle and kiss! They live almost five hours away, and as soon as little Kaalyn makes her appearance, we are hopping in the car to go up there so that she can meet her Mimi and Papi! We can only stay overnight, as we are only paying someone to take care of the animals for one night, but what an incredible blessing - a new baby.

New life.
New hope.

A reminder that the world is bigger than my pain, and that my perspective needs to be, as well.

Sorry for such a long ramble. Fluff? Maybe. I've been silent - lurking - for so many weeks now - feeling like anything that I typed would sound like I was complaining, and I never want to have a complaining spirit - but rather one that encourages and uplifts others. Even though I haven't posted, I check the forum several times a day and read everyone's posts. And as I read, I pray for each of you - your struggles and your burdens - and I pray for all of us - that our days will hold special, surprise blessings to remind us that every day truly is a gift.

=Becky

oh my goodness
saying it lightly
i wish you well
the weather most certainly
affects my body
drop in barometer
will do the job
you are right if you
notice
this is great listening to your body
it talks
we must listen
be well

Im sorry. Im new to this site. Can someone please tell me how i can post my own thread. I have many questions but i cant figure out how to post my own question/Concerns. Any advice will be greatly appreciated. Thank you

Hi Stephie
most questions on using the site have answers in this thread on our new member intros forum
http://neurotalk.psychcentral.com/thread18185.html

see post #8 on how to start a new thread of your own :)

Idk how to do it. I tried but i didnt see anything. Does this mean my post/ thread noone can see it?

Hi Stephie,

I moved one of your posts to our new members forum for more help there..follow this link to it -
http://neurotalk.psychcentral.com/thread202346.html

Becky :hug:
You know what? this sounds very familiar to me b/c my PM doc mentioned doing this to me on a couple of occasions. He termed it a "Drug Holiday" :rolleyes: yeah right, hoot hoot. His reasoning had to do with my tolerance to my meds. By tapering me way down, he would be able to get a baseline measurement of my pain, kinda like starting over. The 'holiday' is the period of time it takes to wean way down or even completely off the meds. He would then be able to start a different pain med plan without me having a tolerance build up.
Well, he retired before we actually tried this (thank God) so I didn't have to do it. But yeah, I was a bit p.o.'d about it b/c how on earth are we supposed to go without pain meds??!!! And for him to make it sound so lah dee dah easy, it seemed completely unrealistic to me.
Your Dr probably has other reasoning for what he's saying about this, but I thought I'd share this with you. Maybe you've already heard the term 'drug holiday'.
Another term I've been told is 'hyperalgesia', which has something to do with long-term pain medication actually causing a sort of 'rebound' effect to where the pain meds actually causing more pain. ?? :confused:
Not sure if I described it correctly.....here's a Wikipedia description of opioid induced hyperalgesia:
http://en.wikipedia.org/wiki/Opioid-...d_hyperalgesia

Well, whatever the case may be, I sure hope your doc doesn't actually take you completely off your meds. To me, that is just plain 'BAD MEDICINE' :eek:
I know me well enuf - I'd end up on my local psych ward.
With what you are going through right now, this seems the worst time ever to try that.
Turning 50 is a big deal. If your doctor ruins it for you, I will personally jump in my cybermobile and pay him a visit........ not a nice one that's for sure.

You don't deserve this!
Rae
:hug:

Rae!
 

Rae, you literally made me laugh out loud! The thought of you hopping in your cyber mobile and giving him "what for" - priceless! Thank you for that smile! :Thanx: :hug:

I have heard the term "drug holiday" but not from my pm. Like I said, on one hand I want to say I understand his reasoning - but on the other hand, being in pain just doesn't make sense. Also, his lackadaisical attitude towards pain has always baffled me. This is the man who doesn't believe in any type of sedation for procedures, so everything I have let him do to me has been VERY painful, especially the two ablations and the epidural lysis (to break up scar tissue). I refuse to go back into his procedure room again, or as I now call it, the torture chamber. :Noooo:

But I'm a stubborn one . . . he wanted to wean me off ever so slowly - like over the next three months (which in my mind just prolongs the agony), so I am weaning myself off just a tad bit faster. I want to go into my next appointment in four weeks and tell him that I am completely off the meds and ask him what his game plan is for going forward. I'm honestly not on a ton of meds - I was taking 10 mg. of hydrocodone twice a day, and 20 mgs. at night. Over the past two weeks - just on my own - I've gotten it down to where I am taking just 10 mg. of hydro at bedtime only, so I don't think it is unrealistic that over the next couple of weeks I can wean down off of that.

What about withdrawals you ask? I've honestly experienced none. Nada. Zip. And I've been on hydro for the past four years, except for the three months last year that he switched me to Oxycodone, but I weaned myself off of that one, too, after I got my implant and just went back to taking the hydro, as it wasn't as scary of a drug to me as the Oxy was.

Am I in pain? Oh yeah. I'm betting that by the time my appointment rolls around my hubbie will have to drive me, as it is an hour away and I don't think I'll be able to drive myself. But, I would rather get off of it now - show him just how strong I really am - and then move forward, instead of dragging it out for 3-4 months. You just don't mess with us Texas girls! :Cowgirl:

=Becky

Weaning off
 

I've done this a couple of times now over the last 10 years. I've done it of my own volition as I hate taking the drugs, and once I'm off them I've been so proud of myself, gone to the doctors and been told off and put straight back in them.
I've never heard the term "drug holiday" I'm speechless, it just reinforces to me where 90% of these doctors think we are drug users taking them for choice and choice alone, not driven by pain.
I fluffed about on another post somewhere about an article that had been published that ended with "if doctors spent more time talking to the patients, interacting and establishing a dialogue we would be able to get to the root of our problem and potentially get over it" I did say on my posting that I may have misinterpreted the article as my mind is not as sharp as it used to be having had so many anaesthetics, had the seizures and taken the dreaded drug Xanax so maybe some of you could take a look at the article and my posting and share your valuable opinions with me.
Becky, I think you are braver than brave to continue with a Dr that will not use sedation for procedures, yes I've had many small steroid injection procedures in my PM office suite that didn't require sedation and they didn't really hurt much and I'm happy to have those done without sedation. But the RF and nerve blockers done under fluoroscopy.... since I had the "totally awake" one at the SKG X-ray where I cried and they could hear me in the waiting room, I've always since been sedated for those ones. They injected directly into the nerves and the man doing it said it was good I was feeling the pain as it meant they got the correct spot. All you who do this without sedation you have my utmost admiration.:grouphug:

I did the cleaning
 

Just to let y'all know, I cleaned and cleaned, I took to it with a vengeance and it took me over 6 hours. I'm paying for it today and even now sitting here I can see things I still want to do, you know the cobwebs in the corner behind the door of the back loo for example. Why is it we can always do a better job of it than when a cleaner comes in and does it?
I cancelled the cleaner mum had arranged for me, at $120 a week I just didn't see her as doing to things I wanted done and yes it was lovely for the month of February but I still could see what wasn't done and tbh $120 is money we just cannot afford. My mum is still trying to get her head around the fact that while before we were the bank of P&L where all family members came to us for handouts financially and emotionally we are closed. We just don't have the money for these things anymore. I haven't been to the hairdresser since September last year, I haven't spent a penny on myself other than food and medication since September.
The new fortnightly "date nights" we've done twice now and I recycled old outfits, steamed and pressed them and they came up a treat. But I felt so guilty for the money spent. I took mum home after dinner last night and bless her, she said she felt guilty she goes to the hairdresser once a week and I can't afford to go at all, it's been a shock to her, she picked up my medication from the pharmacy last month and was stunned to see the bill was $300. It's all starting to finally hit home, her youngest daughter who has always been the strong one, the one she relied on to get them out of the financial hole the older daughter put them in is not what she once was. She can finally see I'm broken. It's been a rude shock.
So today, I'm paying, paying paying, I'm walking in agony and the worst of it all is I'm expected to go out tonight. I've got the footy tomorrow which I'm Looking forward to and the trip to Pemberton also looking forward to on Tuesday, but tonight, nope, not looking forward. Oh well out with the big girl soldier pants, ends must lol. On a good note, the house is clean and I'm feeling house proud yay me... :)

Hang in there
 

Hi, I've been through what you're being asked to do. Just take a moment, if you are still in pain despite being on a shed load of meds, then they aren't doing the job for which they're intended. It's hard, but if it helps you get on the right cocktail, then it is worth it. Saying that, at the moment, for me, nothing is helping that much. The morphine, the oxy, or whatever you're on is intended for end of life pain management, yet our doctors hear we are in pain, so they either dole out more, or put you on something else.
At the moment, I'm on more meds now that I was before I had my SCS implant! Where is the logic in that. I'm reducing my morphine at the moment, I truly do know how hard it is to come off everything. Been there, done that and born the scars etc. You never know, it might be short term pain for long term gain. Please don't think I'm being flippant, I do know how hard it is, I'm on a whole cocktail of meds, but they're not doing the job. Take care of yourself, reduce slowly, if you can't go at the speed your PM wants, stay at the level you can bear for a few days. Baby steps is my best advice. There are new drugs on the market all the time, and they might work better for you, but you can't find out without coming off your current ones. I wish you luck, and hope that the new meds give the relief that you need.:grouphug: oh, I've also been told about hyper analgesia, and apparently that is the state that I'm in at the moment.

I understand your frustration
Clearly
And it allows us
Unwillingly to become
addicted to the drug
A neurologist I had gone to
Put me on Lyrica
A dangerous drug for me
My daughter Saraeve my epilectic baby
33is on it
It was brandy new to the market
A killer for myself when I explained
To him that there was an unusual feeling
I describe it as being in a pool of water
A feeling of not being in my own body
Not labeled yet
Turns out there is a high (very dangerous)
And ordered me to take it
That was the last of him
I wound up having blisters in mouth
Then my hands the skin was peeling
When stopping the drug all my nails had a dent
In them
Dear friend
To have a disco gram and meylo gram
No Meds I'm done over done
My last MRI was the last of it all
To have such a horrible diagnosis
And three doctors tell me follow the oncologist
Findings my blood work is great
Makes sense
But every three months
Not to have a definitive
What the blank is going on
Had enuf of it all
This is going on for four years now
Done as done can be
Wishing all well

Praying for you Eva
 

Your in my special Sunday morning prayers along with Becky, Donna, Heidi, VRae, Bram, Mark and a few others. It's been a torrid month both in the Northern and a Southern Hemisphere. Prayers too for my rock, finding it tough, but he is on a/l for 2 weeks so I hope he can get some respite. Happy tonight, Liverpool won so he will sleep well. It's 2 am...

Pam
 

Congrats that Liverpool won, and major kudos for your clean house! I know how much that takes it out of you - it's awful that the price of a clean house is a couple of days of increased pain - but I know how GOOD a clean house feels!

It's funny what you said about the hairdresser - my husband and I were just talking the other day about that (I was a little frustrated with my long, thick hair and the almost-here hot, humid, Texas summer), and it hit me that I haven't even had a hair cut in almost three years - and the last one I had was done by one of our daughters! Ah, the things we give up to afford meds, doctors visits, countless tests and procedures!

Thank you for your prayers - you, Rae, Eva, Hana, and everyone else are in mine as well. Here's to all of our big girl soldier pants that keep us keepin' on! :grouphug:

=Becky

amen!
Amen!
Amen!

WHATEVER
your are the best
sweetest
thoughtful
selfless act
bless your loving
unselfish act
be better than you ever imagined

jeez you sound sooooo much like myself it's scary
keep up the great job
but oh boy do we pay for it at the end
blessed are the weak

praying and thinking of you

you know it
and we just cannot stop
not an option

New rep
 

I got a surprise phone call from the Nevro rep yesterday, a new bloke. I haven't heard from them since January. He wants to meet me on Monday to try a different program... Not aware I was already on P3 level 6, or that I have only one lead, that it took 3 hours to do the procedure and that they had problems or that they are supposed to be liaising with the Boston rep to get me a Boston paddle.

Feeling frustrated doesn't begin to describe my emotions. We are nearly at April 3 months and they have done diddly squat. I know a squeaky wheel makes the most sound and gets attention paid to, but I'm just not a squeaky wheel, I'm clearly far to tolerant and understanding of how busy they can all be and I pay for it by being forgotten. Just don't know what to say anymore, have to start all over again and have this guy fiddle around and do all the programming over again despite the fact it's already been done.:confused: does he think I'm telling him big fat porky pies ???

i am so sorry
so sorry
that frustrating
feeling of not
getting anywhere
i hear you loud and clear

Arghhhhh
 

Oh the pain, the pain... but then that is Doc's line.

How I pray the pain would be less, be managed better, be.....well, maybe GONE for all. I do not understand the recommendations of some care givers on "hey, we should try you on no meds" when pain is highest ever. I just do not understand.

Oh, how I got to the point of hating the meds, and the fog, and the....well, being stopped up, you all know what I mean. Gee, I still carry a bag of prunes around in my briefcase.

Then reading of reps who are not responsive, who think they might "try another program," of equipment failures....it just seems so all fired awful.

Yeah, I do still hurt, and it has to do with the lower lumbar and leg nerves [the ones I can still feel] which don't always respond well to the stim, or maybe I am not using enough signal..... yet I am SO glad to have withdrawn from the opiates and such. The process was unfun. The backlash was absolutely dreadfully near end of lifeish, and there I was at the time, seeing a psych for the "so, why do you think you felt hopelessness and helplessness" discussions.

These things all of us have struggled to handle are so VERY difficult. Those about which I just read make the eyes cry until they are sore, and we still strive. That spirit of We Still Strive is what keeps all of us putting one foot in front of the other, of seeing to it our spouse or significant other may enjoy a moment if not two, of wanting to have more than two nickels to rub together [or maybe pence depending on locale]. This stuff is not easy. It is exhausting.

So, I resort to praying, and some more praying. Helps me, and I believe helps others. It is my thing.

May each of you feel just a measurable bit better....I pray :grouphug:

I'm tired
 

I'm so very tired and worn out from it all. My PN is spreading I swear up and down the left side, none of it touched by the one SCS lead.... Pain flares today in my back... lower, upper and cervical all self inflicted, lifted something heavy, silly silly me, what was I thinking, oh well I know the answer to that, sometimes we just have to do what we have to do knowing what the consequences will be, pain meds to the full will have to be taken along with extra "make you go".
Lol, oh dear, the things we have to deal with. Someone posted somewhere else about the side effects and the explosive "wind" ..... why does the subject of "farting" make us giggle so. I can sometimes be in stitches of laughter, it's hilarious at times, made worse I suppose because I've suffered so many obstructions that we, husband and I are now very aware if I haven't "passed wind" and conversations such as have you gone today have become the norm.

Oh dear friend
Oh you know it
My granddaughter
gets on a roll
It is so true
herbal tea for a
more friendly way
Not happening
Love prunes especially if you
put them in the freezer
they do not freeze
a nice chewy texture
Or afraid the toilet will
overflow however imbarassing
but the real thing
It too painful when speaking
seriously

May all be well

((((Pam))))
 

I certainly feel what you are going thru and I am so sorry that it has to be you dealing with this terrible frustration. You've been through your share (and more) of trials and tribulation......yet you always rise above it all. ..... YOU are truly one to be admired my dear friend, truly I say. For I know not many others who can start a post on a note of understandable frustration, yet end thy post by giving credence to such a noteworthy description of a blast of wind from within, somewhere between that of a faint 'flufffffff', to the other end of the spectrum from which we measure an explosive wind of monumental velocity, perhaps with the capacity to reflect such force on a richter scale.....I do declare :Clever: with all thine wisdom..... that....as long as it is merely an explosive WIND of which we speak, then thankful we must be. I shall leave it at that. :cool:

My hope and prayer is that this awful suffering you've been going through will please GOD stop!!! :hug:

Rae

An Update on my visit to the rep
 

Well consider me stunned. I have had this device in since December and had little to no pain reduction to the never ending referred pain that spread out to my hips, both sides. Most of you will know what I mean, that agonising pain that comes as you turn from side to side at night trying to find relief and you drop off to be woken shortly after "in" more pain. Or as you walk it knifes in sharper than sharp?

The rep conducted a sensitivity test, never had one before. Experienced nerve jumping tingling on the right side of my body, nowhere near the spine, on the right side at waist level. You know, that muscle jumping tingle you get when the physio puts the pulse machine on to high. I asked did it mean the lead had migrated, but no, he's happy with it. First time I have ever felt any indication the thing is on.

So he reprogrammed it, explained the electrodes work in pairs and different levels activate different electrodes meaning different areas are targeted. None of this been explained to me before, I was of the impression p3 level 6 meant all electrodes blasting out, but no... So now I'm on P1 level 4 and I'm sitting here in surprise. My thoracic is weeping, cervical screaming, left arm and hand buzzing, BUT reduced hip pain.

The rep agreed I have every right to be annoyed and he was disappointed in the June date for me to see my PM. If I get the paddle with its 32 leads I will get coverage to my thoracic, cervical, lumbar and my left arm/hand. Nevro are working on developing a paddle but it's a long way off, so it's going to have to be the Boston.

Learned my PM is going to retire and that's why the list halved and appointments so far out as he is working 2 to 3 days a week instead of 5. He is a miracle man and he is tired. So hope I can find another PM as good and as communicative as him, bear in mind most PM start out as anaesthesiologists so talking not high in their patient skills. I can see the PM I used to, he is brilliant but he only works out of the hospital where they discharged me with a broken back and treated me so atrociously. Much thought will have to go into that one.

August looms ever closer so I've booked an appointment with my current NS for May and they have me on the cancellation list. I'm seeing my GP this Friday and will get her to refer me to the NS who does the paddles. All this waiting has got me nowhere so I'm taking the bull by the horn and will do the legwork myself to get me in to seeing this new NS instead of waiting until May or June for my existing specialists to do the referrals. I've been so stupid, waiting and waiting being quiet and compliant. It's time I became a squeaky wheel, August will be here and nothing happening unless I take back control of my own path. I want / need to be well enough by the end of August to get back in to the workforce.

Woohoo, just got call from my NS receptionist, she's fitted me in for April 14. I'm going to push for the L2/3 fusion to sort the lumbar pain and paddle insert for the cervical, thoracic and left arm/pain. Yay, I'm excited, I might be in and out and recovering in time for my husbands 50th in July and ready for work by August. It's good to have a goal and dream, yes it might be dashed, but for now, I have some thing to hope for again....

and that's the way it should be
to be given valuable information
why shouldn't you look forward for
the future
i am happy for you and your
loved ones

that you to will not settle

to be able to make plans
for the future

you know you
like no other

you figured out you

and only for the better

God be the one
to make any important
changes

so happy for you

keep the faith
and empower yourself

sending gentle hugs

Originally Posted by PamelaJune View Post

"Feeling frustrated doesn't begin to describe my emotions. We are nearly at April 3 months and they have done diddly squat. I know a squeaky wheel makes the most sound and gets attention paid to, but I'm just not a squeaky wheel, I'm clearly far to tolerant and understanding of how busy they can all be and I pay for it by being forgotten. Just don't know what to say anymore, have to start all over again and have this guy fiddle around and do all the programming over again despite the fact it's already been done. does he think I'm telling him big fat porky pies ???"

My God Pam,

I am so sorry that you have been dealing with so much pain from all sides... oh
that is NOT good, as you have had far more than should ever be your share!!!. I look up to you Becky, Rae Mark... and feel that I am to follow in your footsteps..? Oh no...no. I pray for your successes and will keep on as Mark says.. Speak loudly to anyone of those turkeys who will listen to you... Now don't give up on your strength! (I can feel it!) If it is in your heart then fight those bad medicals..we are all with you. I Right now I'd say that I may rethink my course, and just deal with a day that lasts for 5 hours;now maybe it seems like a very good deal. You are stronger than strong Pam. I admire you and know that you will triumph over this, too.

May you rest tonight and feel better tomorrow, and on that way each day. :hug::grouphug:

Hana

Rep called and I've added in some fluff to clear my mind...
 

Well he followed through, he called on Thursday and increased it from level 4 to level 6. No real difference and hip referred pain increasing every day. I often say pain is sneaky, if you block it off somewhere it shifts somewhere nearby. I'm sure it's the bodies way of telling me, yes you may have blocked it there but actually there is something wrong and I'm trying to get your attention.

I'm not giving in to it, I'm braving the crowds again and going to the football. It's our big man Coxy 276 game and he will pass the previous record holder Jacko. It's a big celebration and I couldn't pass up the offer of premium reserved seating. We will be in the shade, row S and be out of the way of most of the crowd. For my US and UK friends, I'm referring to our Aussie game of AFL, played now in all states but very big in WA, VIC, SA, NT and TAS. NRL big mainly in QLD, NSW & VIC but also played now in all states.

I've been reading threads and posts by others on various forums and as always, I'm moved, so moved by the endurance, strength and tenacity everyone offers up. Pain is clearly still misunderstood by friends and family, even I'm sorry to say by those who practice in the field of pain management.

I'm infuriated by the constant inference it's "in our mind" it is real, raw and agonisingly painful. I encountered the suggestion last week when my cruel sister in law wrote "I hope you get the empathy you so desperately crave" she then went on to say she has "drawn inspiration from cancer sufferers near to her" and she would have "more respect for me if I did something meaningful with my life rather than moan about it". I'm so tempted to write back, but I haven't and I won't, because if I did, I would write, I'm pleased to hear you are inspired by those cancer sufferers near to you, in my efforts to be meaningful I've trained for and completed 50 mile bike rides, 10 mile marathons and many, many raffle ticket selling events even standing on a bar top on one occasion for 30 minutes. I have personally raised over $12000 for charity and made every effort to keep my body fit and healthy. So, I'm pleased you are inspired because completing bike rides and running events or even participating in charity fund raising events will give you a healthier outlook both mentally and physically and you truly could do with losing that extra 30 kilos you have been toting around for the last 23 years and the pettiness you persist in engaging in. Please go away and leave me alone. Your brother wants nothing to do with you, his choice and I can see why, your negative comments waged by you in your own personal war against me is wasted energy and effort, your efforts to gather other family members against me is wearying, we are not interested in your thoughts and I truly don't need your respect. Go do some physical activity and feel better..... Now you can see why I don't write back.

The day is here
 

Off to see my Neurosurgeon, fingers and toes crossed folks for some light, or at the very last illumination at the end of this darkened tunnel.

when u can
 

write when you can....I know you have a long drive.

We are right here waiting the news.

And since you don't write back to that sister-in-law....why don't you just stop reading her letters too. keep that negative hurtful crap out of your life.

sending hope /light right now

HB

dear friend
out of sight out of mind
i practice this
and try to empower myself
until then do not entertain them
better yet if you might take into
consideration and take the next step
that will certainly send the message
"return to sender"
to soften the blow
prayers
in Jesus I Trust
eva

Still no answer
 

Saw my NS, no notes from my PM on the injection procedure done in January. Remember I said his reception team seemed unaware I had seen him... I explained I had up to 10 days positive result, that I began walking and exercising and felt real relief and then it all fell into a heap. Apparently the result from that injection procedure indicates I need another fusion on L3/4, the injection in February of which there are notes indicates L2 is ok, it's L3 that is the problem. But because no notes from the Jan injection, potentially I have to have it again.

Discussed my goals and August, he said not to focus on getting back to work, not likely to happen!! But he did say its feasible to have the fusion before and be as well as I can be by August, he believes sorting the lumbar problem will relieve the thoracic and cervical as my thoracic is having to work extra, extra time to carry the lumbar which has a knock on effect on the cervical causing the arm pain.... As I can't get in to the PM until June he will ring him and get me slipped in next week if another injection is needed. He himself is on leave next week and will ring me by the end of this week to tell me what's going to happen.

So still no referral to the other NS who does the paddle. I'm not convinced the lumbar fusion is going to sort the thoracic, cervical and arm... Yes I can understand the thoracic pain correction, but my neck and arm pinging and zinging I think they will continue as they have been problematic ever since the car accident in 2004 and deteriorating by the year. The Stim was supposed to have addressed the lumbar, thoracic and cervical. The lumbar technically should not be a problem if the fusions work. I know doctors only focus on one thing at a time, but I'm getting the distinct feeling I'm going to have yet another lumbar fusion and by August they are going to say you now need the paddle for the cervical and arm pain.. Which will mean opening up the back again and doing the laminotomy. I'm really beginning to see Rrae's perspective and it is all driven by insurance and $$$.

I rang the NS secretary when I got home and told her I had my diary notes from post the January injection, she agreed it would be beneficial for me to send them in as I really don't want an unnecessary injection just to prove a point that's already been made. The PM reception team have his theatre notes which he keeps at the hospital as back up incase his office notes go missing (seems he really is getting tired and ready to retire).

Still stuck with June
 

Oh good news, NOT... Just got the phone call from my PM receptionist, she says my NS rang PM yesterday and they feel a L3/4 injection needed. The earliest he can is June 5th with a June 23 flow up. I'm feeling overwhelmed with tears. I can't see any of this being fixed by August, returning to work is not a goal it is a reality. My superannuation payments stop in August and I can't see us able to afford insurance premiums, GP, surgical and medication gap costs post August. Hence why I say I need to begin working come August and need everything surgically done by August while I can afford it.

About to ring NS secretary and have her tell NS the receptionist is sticking with June appointments. So frustrating to have to have it again when I know it worked, my notes say so, and to have to wait until June. I knew next week like my NS said wouldn't happen. I know my PM is tired, I get that, I know they are stretching his diary so he can continue to work part time, and I know as cynical me pipes up, yes, so the PM team can also continue to work, because while he works part-time now, they continue to work full time on full pay but with considerably reduced workload and once he retires they will be without work.

Rang NS secretary, she not happy with June either but stated NS will not have anyone other than my PM do the procedure. She made a strange comment "they really are putting the clamps on Dr F aren't they" so maybe my cynicism isn't unwarranted.

I'm telling myself to practice what dad always said. If it is meant to be it will be. Obviously there are other things at play and I need to accept it is what it is, in my minds eye, I can see how it is going to pan out. Husbands 50th is July 18. My 40th was spent in hospital, what's a bet his 50th I will be scheduled to be in hospital.... Well I'm not doing it, he needs a celebration of life, July will be a month free of hospital appointments no matter how bad I am. I will just have to suck it up.

I was so in pain yesterday and after the appointment disappointment took a knock out pill rather than the pain meds as I'm managing a partial blockage. The knock out pill doesn't cause blockages. Made hubby dinner, luckily decided on a cold platter as we had a power outage from 6pm through 7.30am. Found candles, unhinged powered garage door for easy access. knock out didn't knock me out fully, I was up and down, on the upside, no headache. Must be dads spirit telling me to let it all go and accept I can't worry over everything or influence anything anymore. I'm not what I used to be, I can't will things to happen or make them happen. I am a shadow of my former self and that's ok, it's time to accept and rest and let things happen at their own pace.

oh PamelaJune

your my kind of woman
not only about the diary
but you assessment
you pegged him

you keep on going
your a smart cookie
you make perfect sense
bottom line all this unnecessary
things such as the injection

stay strong
and copies of
e v e r y t h i n g
me

your father so wise
and able to be there for you
and explain it too
and you bet your of former self
you are growing
becoming wiser
a beautiful person you are
happy to meet you
i ask my father to watch over my babies
as they all were shorted from
certain essentials in life
like their own dad
he would know of their situations
i pray his spirit watch over them
as nuts as he was
you understand
i wish you ease with you physical pain
and can see you spirit is in the right place
blessings to you and family
me

Hi Pam,
It is so hard to hear your doc say not to think about going back to work.
I think it was his way of saying, focus on you and take it one day at a time, don't set a deadline. Obviously, financially it can be devastating but, from my own experience,
it always works out. It may not be the exact life you dreamed of or wanted but, you are a strong person and it will be the best it can be.

I am so sorry for your pain and the delays but your father sounded like a very wise man....do try to take it one step at a time, one day at a time....handle only what you can, for today. The bills may not be paid, the house not clean, everything not tended to but, family and friends may get theirs nose out of joint about all kinds of things. Ignore them...be with the people you love, people who make you feel good...not people who criticize you. Even if that means turning away from family. You need THEIR support now. Take care of yourself and be with your husband and let everything else go.
All my best, D.