NeuroTalk Support Groups - My story so far!

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The weather's a right shocker isn't it? We have about 2 foot here and the rabbits were completely covered in yesterday morning and Mike and I had to go and dig them out!

Well Saffy this weather is just SO unusual for us isnt it. -14C :eek:MADNESS!! But I do love the snow I must admit

Just be careful out there. Im making sure I have good boots with good grip so that I dont fall:eek: Thats the last thing I need now for the battery or leads to be damaged!! so be careful:)

Mark its so good to hear from you again. Im praying that this new 'home' you have will be comfortable and that you will get some employment real soon. Im sure it was a very hard decision to have to leave your home where your children grew up, but a home is what you make it and where you make it......Im sure that God is looking down on you and He is going to help you, I know HE will......we must believe that. I too will continue to pray for you and your family that this turmoil will end for you so very very soon.

Take care

Jackie :hug:

Thank you Jackiey

Yep, we will be moving soon. We await the security and credit check for the rental we have located.... hoping to hear tomorrow or the next, and yes, the snows can be an issue, so getting moved is a high priority. We have been known to have snow depths of 4 feet.

Thank you for your prayers, still need work, still looking.....
Mark56:hug:

Well good luck with it all Mark....so good to have you back too;)

Jackie:hug:

Hey there, we are getting ready for "weather" here too! snow, snow, snow and more snow! the boys are looking out the window longingly as it is far too cold to play outside right now! Brrrrrr!!!

Quote:

Originally Posted by Jackiey (Post 688095)

Hi everyone

Im writing this as I lie in my bed in a house that is oh so quiet. The day outside it wet and miserable and making me feel somewhat fed up today!:( But grateful that I have come this far.

I was an ordinary working housewife back in early 2005. My husband is a loyal caring and wonderful man and we were blessed with 3 beautiful daughters and 1 beautiful son, all of whom Im very proud of indeed. They are wonderful children who have looked after me along with their dad even in my darkest days. We are also blessed that one of our daughters, our youngest, has Special Needs. She is a wonderful young girl and a blessing to have in our home. So out life was fantastic, idyllic and happy.

Then out of the blue my legs hurt then my back hurt and in one foul swoop I couldnt move or walk. I was sent to see a fantastic Spinal Consultant who whipped me into hospital straight away and removed a disc which was pressing on my spine and nervous system. I had the burning, tingling, painful symptons which of course would be gone once the dreaded disc was removed! WRONG!!!! now that didnt happen.

I continued to have endless epidural needles inserted into my back assuring me each time I would be ok. But alas each time was as bad as the first time with no relief. This carried on until the end of 2005 when I started to also have stomach trouble. I was admitted for tests only to be told I had a low blood count (8) and that I had gall stones to boot!!!!.......I was scheduled to have a spinal fusion in early December L4/L5 only for that to be cancelled as I lay on the theatre trolley. I was devastated. I was sure this was going to put me on the road to recovery. By now I had lost over 45lbs in weight, not a lot you might think, well I was only 135lbs to start off with. I began having awful thoughts , I was crying all the time, I couldnt accept that I was now a delapadated woman and nothing was working.

In early Jan 06 I was rescheduled to have my Spinal Fusion done. I was now in the depths of depression, however, I didnt realise it then. I lay in my hospital bed with my morphine pump at 4am wishing it would all just end and my suffering would be over. I couldnt eat, sleep, think, or even care. I begged the Consultant to let me go home to my family where I knew I would get better in their care.

After being at home and eventually having the strength to walk and try to get back to some sort of normality I had to undergo another Spinal Fusion in June 06 at level L5/S1. OH how I hated going back into hospital. This operation again didnt help. I was now worse off that I had been at the very start. Now I was having all sorts of pains shooting down my legs and across my back. I was on a coctail of tablets and medications that I didnt know whether I was coming or going.

This went on for another year when I just asked my Consultant to TAKE OUT the metal in my body. I didnt find I was having any benefit from it being in there I WANTED IT OUT!!!
So in Aug 2007 the metal was taken out. I continued to 'live' my life.I couldnt do anything. I couldnt be a proper wife to my husband or mum to my children. They were rallying around me. Life just felt so bleak.

Soon I was referred to the Pain Management Clinic. I was told that basically all they could do was try to manage my pain. I was so sad to hear that after all I had been through that this was it.

I had various new meds, rhizotomies, spinal block injections, epidurals, lignucaine and ketamine infusions, Lidoderm patches....you name it I had it all to no avail. Then my Consultant mentioned the SCS!!!!

This was my light at the end of the tunnel, this was my haven.
So I went through the rigerous tests and psychie tests to be told, NO your not mad, your in pain.

I was scheduled to have my trial done in April and oh how good did that feel. I had it for a few days and I felt wonderful, relaxed even. It was great I WANTED IT NOW!!

But I was told I had to wait as my Consultant was away thru June/July so it would be August before I would be implanted. Can you imagine how I felt, that after 5 long years there was finally something to help me AND I HAD TO WAIT nearly 3 months.

Well during that time I became a nana to my first granddaughter, which was wonderful and took my mind of the waiting.....

So eventually on the 5th August that day finally came. Im now 19 days post surgery. The SCS is doing some of the work. It does need some tweaking here and there and I want to have it TURNED up so that I can get rid of some of the horrible sensations I have at the back of my legs. But so far Im being optimistic.

Ive read lots of your stories here on this forum and Im encouraged that this is what Ive been waiting for all this time.

I used to wonder if there was a GOD up there watching over me. I have always tried to be a good person and to have to endure all this pain I have found it hard to keep believeing. Even though HE sent us a beautiful daughter with Special Needs I do at times feel , well we were picked for this as we are strong people, we can do this.

So now as I type here this morning, after sharing my story, I realise that me being fed up this morning, Is NOTHING , compared to that awful depression I felt back in those dark dismal days. You know I often say, oh I feel a bit depressed today, but hey, thats not depressed thats just a 'down' day.
I hope that my story is of some benefit to some people. You know during those dark days there was no light at the end of the tunnel, but today, yes there is. I know that Im on the road to recovery. I know that I can turn my life around and try to be more active and get on with this wonderful life that GOD has given me.

I pray that you all will get to a stage where you too can be grateful for the wonderful life you have and that your pain and suffering will one day be pain and suffering of the past!!!!

Thinking of you all

Jackie :grouphug:

[COLOR="MagentaHi Jackie, Nice to meet you. I know you wrote this particular post a while back but as i read it I could relate to it.
"][/COLOR]

I had back pain from about 2004 to present, and had severe migraines from the time my daughter was a year old which would have been 1991. It seemed to me that pain was a big part of my life. Pain seemed to be controlling my life yet I wanted to be in control of my pain. Some of the migraines had reached such levels that by year 2006 and on I had to have home health come out and do IV therapy because I had suffered with a migraine for over 3 days.

In Dec of 2007 I had a spinal fusion, which did no good whatsoever and in fact caused perm nerve damage to my right leg. Knowing what I know now, I would not have done that surgery.
Now I have extensive scar tissue, the level above the fusion is detorating (which they tell me is common). I also had to have a hysterectomy when I was 34 years old so I have been on HRT for ten years but it has also caused Osteoporsis.

I say all this to get to the point of saying I can understand what you were saying in your post. In fact not that long ago at all I was actually mad at God and told Him so. I am a christian woman and have been for about 8 years now. But I was really really mad. And it was not just a fleeting moment. I have since prayed, and come to terms with the inner turmoil of my spirit and my emotions. But the anger I felt even surprised me.
I think sometimes we just have to cut ourselves some slack, prepare for the bad days, rejoice in the good days, and hang in there :)

I hope your pain is better these days and you have more sun and smiles in your life. Best of luck.

L.

Rae reminded me to read David's writings, he railed against God in anguish, anger, pain, discouragement, and also recognition that the almighty is there as friend nevertheless. I have been in a very dark spot these many weeks, and I can truly relate to the disappointment, the questions, the wondering, and yes, the anger, why would I be given this wondrous means to control pain without mindaltering meds only to find it SO difficult to get back into the ranks of the employed? WHY??? WHY???? So, I talk to God, and then I try to sit back and listen for those answers only given through lessons taught in God fashion.

I try,
I pray, and for you too,
Mark56:hug:

Oh Thank You Mark!

....for bringing that up, about the Psalms David wrote in the Bible.....
David was an incredible man..... 'A Man after God's Own Heart', as the Bible puts it.
It means so much to have you back here posting......
Even though you have yet to find clear answers, at least I sense that we have you 'back' WITH us.
I'm pretty sure a huge part of this dilema you face is because of the economic downfall we are facing as a nation AND worldwide! Jackie has shared with us how challenging it is in HER homeland in Ireland!
It's so very unfortuneate.
It WILL change! It MUST.....!!

I can certainly relate to what Tinkster has shared regarding the anger directed toward God......It stems from the frustration and we don't know where to turn.....we turn to God, yet we are angry. Chronic pain SUCKS!!!
It's natural to feel anger when pain is at the forefront of our entire beings.

Once in awhile I have a good cry.....lots of tears! It's actually a good 'release'.

I am ever so grateful that we are able to stay linked together through this wonderful forum.....there are NO geographical barriers amongst us!
We all have created such a wonderful bond that brings SO much strength.

:grouphug:

Thank you Tinkster

Tinkster thank you for sharing. Some of your post is soooo similiar to mine. The anger at times I feel for going ahead with some of the surgeries overwhelms me at times. I often look back on the last nearly 6 years and wonder if my life beforehand was a dream. How confident I was when I was working and holding down my job with a family too. How I could meet all these new people and manage their finances and feel proud of what I did.

Now unfortunately thats no more. So its a distant memory for me. Its not something I can do again. But after having all those dark days , yes I do have the bright ones too. And yes God has helped me along the way. I do find prayer a wonderful help. And at times I do question why me, but then I look around me and think of all the good things that have happened to me too.......

Rae you are so right about us here in Ireland. In fact we are now the laughing stock of Europe!!!!!! Ireland is in a deep depression unfortunately. The greedy bankers and developers have ruined our country and unemployment is rife unfortunately. With no hope of it getting any better for a few years to come. So I know exactly how Mark is feeling when he says that he cannot get back into the workforce. Yet he has overcome so many hurdles... Im praying that it will turnaround for him real soon.....it seems to be across all nations this economic downfall!!:(

Im sure one day there will be light at the end of the tunnel for all

Jackie :grouphug:

And in that we all have a common prayer

That life will be turned to focus on the common good, the common need, away from greed, and eyes opened to those whose needs remain unmet. For us as a family it was so much fun and fulfilling when we reached out during times of our economic good and built an orphanage in Bangladesh while also sponsoring children in Africa. Now we are among the families our church reaches out to with help because our purse strings are frayed. It is such a switch in roles, and yet, there are lessons to be learned no matter our lot in life.

As for me, it is hard not to be able quite yet to provide for the needs of my family in the manner in which I was trained. I strive to return to the workforce each day, renewing connections, establishing new ones. Hope that there is a place yet for me and for the gentleman or gentlewoman I see with a cardboard sign on a street corner. I never pass one without saying a prayer for them. Each of us need to feel needed and fulfilled in our ability to provide sustenance.

I don't ask to return to the jet setting high flying executive suite I once knew, only that I might be able to provide and follow God in all that I do. Interesting, because the original 12 were asked to drop what they were doing and follow. Surely there were families who had needs that were affected by such a call. How did they fare? Can I answer God rightly focused on the needs of my family? Have I the means to provide for them and do as He would have me to do? So many questions awaiting answers. So many answers to be matched with questions.

Even so, I have hope that in the coming days answers will come my way as I search to find the means to help support this family.

In God's will,
Mark56:grouphug: