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.