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

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


Gerry

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.

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

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

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

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.