SCS trail is near:I have fear!
 

My 4 hour car ride to the City yesterday was for a SCS pep talk by the doc. If I want to go forward, I see the pain psychologist in 2 weeks and surgery can be scheduled immediately. I made the appointment . I'm wondering if i should get another opinion, although my options are limited for what can be done. 43 years of treatment have eliminated choices. I have both gained and suffered overall for the aggressive treatments and surgeries done to save my arms from the beast...and now I also have degenerative spondy..

I was to be ready and have decided… but I had more questions: I asked the doctor what he would do if he were me. He explained that he felt it was best to start with the stimulator for both upper and lower spine. Then, if that doesn't work we'll do something else… Like the pump for my lumbar and (something else for my cervical spine) Honestly, I feel a bit of caution for the RSD in my upper body. I have nowhere else to go with it. When I told him vibration is a trigger he grimaced...:rolleyes: yet he still thinks it's best. ** Does anyone have an opinion? So many times I've been on the verge of an amputation, so I'm cautious even of a needlestick., and I'm uncertain now! :confused:
I agreed to a psych eval. and a new MRI of my cervical and lumbar spine. He also ordered me the flector patch. Can you believe my insurance said "fine" to the pump or stimulator and denied the patch? I'll wait til monday and hope the doc can get it approved.

RSD began when I was 13. I was an athlete swimming miles every day and a DVT formed in my arm. by the time I was 30 most of my upper sympathetic chain had been removed, and I still had severe symptoms. Block after block was done (some successful, some not)... and eventually, a last exploratory discovered extra crossover sympathetic fibers into my arms. I was in the middle of so many arguments with the doctors about what was going on. As of ten years ago,my diagnosis was Severe Basal Spastic Disorder. My last surgery for this version of RSD stuff was a peri- arterial sympathectomy, and my symptoms were mostly absent during and long after my tumble off the road. A bump on the arm 2 years ago set of a horrid new round and I haven't gotten it under control yet....


(Here is a little vent) OWWW!! :eek: I want to post more... but I can't sit, or stand...my hands not able to hit the right keys... To sit my hips ache and legs have stabbing and jolting pain. To escape the pain, I am running from the kitchen to either of my 2 chairs that are tolerable for a short while,.. then I get up for the next task. When it is at level 10 I go to my massage table~ the best investment I ever made! I can lie face down, otherwise impossible because of my cervical fusion. I must do something...I must!

I am still learning about how devastating back problems can really be. I know about CRPS.. My heart is with all of you who suffer and thank you here for your support too. :hug::grouphug:

Mine is Vibratory Sensation
 

Just FYI Hana-

Mine is a Boston Scientific model and the sensation is as though vibrations via my nerves..... rather like a bzzzzzz.

I have been blessed to receive it and am thrilled at its restorative benefit in my life these past 3 1/2 years.

May all be well with you in your decision and your Trial if you go for it! :hug:

Oh Hana,
You have so much going on. You certainly don't want to risk possibly worsening your conditions either. There have been some very good SCS outcomes and some not so good.
Some have had very good trials; but different when permanent implant. Often it has been the migration of the leads.

Mark has a very good recommendation which he uses BLAST which each letter stands for what to do to help leads stay in place until they are permanently scared in the position originally intended. I am sure he will explain this for you.

I, myself, had an unsuccessful lumbar trial a few years ago. The vibrating was in the groin, top front of legs and knees. My biggest problem was spine pain, leg pain, as well as the burning in my feet. The trial did not go anywhere near those areas in spite of the rep trying to reprogram. My Pain Management doctor recommends another trial. But for many reasons, have declined.

I completely understand your "OWWW". I have an extra pad on my kitchen chair with a foot rest to put my feet on so as to relieve some of the back leg pain. Also, use my elbows on table putting pressure to relieve some of the spine pain. Have one comfy chair in the family room with arms to put elbow pressure and a couple of throw pillows on the floor to rest my feet. Have to keep getting up and walk around or after a little while; gets too painful to continue sitting. Yep !!! Not nice indeed.

Wish you all the best in making your decisions; especially with possibly two SCS's.


Gerry

Thanks Mark!

Your story is one of legend, and I appreciate the support. :) I don't mind buzzing, but I in this body 'i never can manage to get buzzing to stop... my nerves always vibrate, but if there wasn't all the pain..:rolleyes:, I think, :D!!! It would definitely be tolerable. My body is weak at this point, as I'm sure is the case for many, but I think I that will not stop me.
Interestingly, this time it is about 'caring for' and not 'fixing' my body, so I am evolving.

May you and your family continue to heal! :hug:

Thanks Gerry for your kind words. I've been reading about the good and bad outcomes,and it seems to parallel my experience over this lifetime if surgeries and treatments. The last major treatment I had was steroid facet injections at 4 levels in my spine. My pain went from 10 to 2000 in one treatment and I haven't gotten it back to where it was yet, so I have a fear of further treatment.

Sounds like your experience's similar to mine in things that you do every day just to say comfortable! Actually I'm going to adopt some of them so thanks so much. I'm going to buy some more pillows to help me around. Right now I'm carrying around a bunch of bed pillows that I sit on in the house and one that I take to go outside, in addition to the normal seat pads.

I feel a bit stuck because I am alone and I wonder if anyone has done this by themselves? My right hand works most of the time, even through pain i can do a lot, unless my fingers are numb.

My partner has been MIA because of the difficulty of pain and a TBI since i woke up by the grace of a very benevolent God. It has become dysfunctional so that i left am alone when i am sick or in pain. Sadly, i am not allowed to reach out either, and the issue is not love. Somehow we lost most of our friends in the several years i was " gone". I know that they tried to call..and no one ever answered the phone. Anywhoo, this is a different life than the one i left.. Full of pain and still the sun keeps shining, even when its raining, even at night, there is light.

I am thinking that I will probably go for this trial... and ask them to only activate the lumbar area of it and not my cervical spine just yet. I want to test one area and not blow my whole entire body out if it doesn't work. I guess I would say that I'm healthfully cautious.

IF.....
 

The Trial has lead emplacement to a single generator passing to both the cervical and lumbar spine..... assuming the programmer has half a clue, they should be able to provide temporary programs to allow you to select lumber alone, cervical alone, OR both. Just a thought, but going the distance for a Trial can give clear indication what works and what does not.

Prayin for ya, M56 :hug:

Thanks again Mark...

I had a reply that was eaten when I got up to rest earlier.(they are dear... for the cost of sitting to type can be high! )
Anyway, this is great for me to know...and you're right! I will be able to get it all over with at once,and thank God for a trial. Still..:eek: As I said my main concern is making this CRPS worse... so I'll continue to get informed!
Also, I don't have leukemia but close, and my immune system is suffering a bit too. The hematolgist says my platelets are high enough to proceed, so, that's good. I see my GI doc for the final seal of approval next week. On we go. Like BLAST, don't forget to REST, and well!! :)

Namaste, Hana

High frequency SCS
 

Hi Hana, my SCS is By Nevro. Nevro Senza HF SCS is widely used in Europe and Australia but still in trials in the US. It runs at a much higher frequency than some of the other brands and because of the higher frequency you don't get the buzzing sensation. I think I read that the Boston scientific precision spectra plus also runs at the higher frequency now as well.
Please Check with your practitioner as I was told yesterday that the higher frequency without the buzzing has had better results in patients with CRPS. Seemingly the buzzing can in some cause the CRPS to spread. I don't have CRPS and can't comment, but I can tell you, I have my unit running 24/7 and I don't get any feeling whatsoever to indicate it's running. When I turn it on and off, I only know it's off because the unit tells me it is off.
Be well, be safe, be pain free, my new mantra for us all here on NT.:grouphug:

Blast
 

I have seen this listed so many times..can anyone tell me what that stands for??I know bending,lifting???I am waiting to get approval from insur..Had the therapist visit..gave the go ahead..thank you..wishing you all well..:grouphug:

Blast
 

Hi Moosey-

I coined that BLAST term some years back after being in recovery and nurses were saying I should remember BLT for no bending, lifting, twisting..... "Oh, and also remember not to Stretch" I was told. I said, then the acronym is not complete! Told them make it BLAST for no bending, lifting, stretching, and twisting......

A clickable link to the post in the stickies threads at the top of the forum for SCS is here - click it and go there to read every word I wrote to put it down as a resource. http://neurotalk.psychcentral.com/thread114142-2.html

Add "log roll" to that, and you are fixed for surgery. Log roll is the method for arising from and returning to bed so as to avoid hurting self more, and to minimize risk of messing with the installed spinal cord stim works.

I hope all goes well for you,
M56 :hug:

buzzing sensation
 

Just a comment on the buzzing aspect...I have a Metronic Adaptive Stim...the buzzing adapts to another setting as I get up and down.

For me it was very hard to over ride my brain to the sensation....when I go to walk....my brain says I am wobbeling...be careful...don't step...look down...your gonna fall. I am almost two years post op...it still happens....I have to run it on very low if I want my brain to ignore the sensation.

My experience.
HB

Thanks Pam! Fantastic actually! I didn't know about frequency differences, and can see easily how this can be VERY useful for different pain conditions. I have the option of the Spectra Plus and will definitely bring it up once I meet the rep. Surely the device makers are taking this into consideration as well.

Continued prayers for speedy recovery! Feel better! :hug: All! :grouphug:

YOU my dear
are a smart intuitive
amazing beautiful person
and so happy to meet you
you are never to second guess yourself
only YOU know your body as you do
doctors are Not gods
we hope to be in the hands of
qualified knowledgeable doctors
and although time gives one
knowledge but experience
by listening to there patients
thank you for sharing your experience
strength and Hope
you go
kick butt
as MD
is on my mind know
how one challenges their
limits
with much care

again you GO

hannabananna

what can i say
but
so sorry
i was a newbie
i will always remember
the pictures
as they tell a story in itself
be well

i fell like "Forest"
the stories go on and on and on
mine never stops
somehow i seem to fall into
that percentile of
what might happen
to a certain few is deadly
outcome failings
my dear sister
gets her eyes surgically
altered as to not have to wear
glasses
with her
fell into that percentile
of a sandy feel
all of the time
just an example
was breastfeeding my son
no period
statistically up there with the pill
not in my case
i was breast feeding and surprisingly
pregnant with my third baby
not fun
always looking for the ball to drop

too much PAIN rant
 

Hi All,
I haven't been able to get my feet under me since Tuesday when I had my MRI.. seems like the harder I push myself the less likely I am to ever get back to where I was.:( Wednesday I felt like a disaster area… Tossing and turning moving standing sitting walking and all of it in pain. Thursday was another 4 Hour Car drive for my G.I. appointment and pain psych evaluation- that appt was great, and Iam approved..! :) Friday I spent some time trying to compose a post… Slowly so I could take care of my energy, and my computer ate it. It's hard for me to sit, and my computer has already gone berserk and deleted my entire last post- or what would've been this one so I'll keep it short. :thud:

Next day... I got the results of my MRI this morning and had a curious thought. Somewhere I posted the condition of my neck with some severe changes above the fusion..including cord compression. My lumbar has one spot of severe compression on my cord at L2 –3, with severe neuroforaminal stenosis at multiple levels..multiple levels of,, oh heck.. My brain just cannot do this anymore. I'm over the top and pain is more than I can take right now. I had to fix my computer today(2 days ago) before I could type and now I cannot sit to type!AARGHHHH! My patience is shot as are my nerves. At home life is unbearable. My spouse has decided that our hearts can't be shared because I make life too miserable... Oh my gosh! It is so hard that I can't imagine it. I just cannot do anymore...now. Back to bed now...

I still have pancreatitis and am battling nausea constipation and bloating, making it REALLY hard to take care of anything.. so I rest and pray for this new pain to pass... The radiating pain comes and goes from my neck... my back never stops hurting, and my hands are swollen and HOT right now...
RSD- My nerves are on fire in my arms and my arthritis flared..everywhere. My shoulders ache, and I can feel the pain in my muscles as they waste. I try not to think about it, but right now, it just is. My left hand is so sensitive I can't handle water flowing over it..both arms hands are HOT and swollen, cannot tolerate much touch, making showers a challenge, much less anything else.

DDD... I'm having pain that feels like my hips are broken and sitting is too hard. My legs are heavy as lead, yet fragile and feel as if I am standing on legs of broken glass..nothing new here, just a bit more of it. I am a bit worried becuase of the condition of L2-3, but I'll see another doc before I go ahead... with any SCS surgery. I want to know what is.

Emotional pain also takes it's toll when there can be no peace in the house... it can become lonely and pain feels magnified... I think of eva such a dear, and PamelaJune right now. Those posts I made while resting are gone too, so here I say my heart is with you... I understand some as my hubby has changed so much... and maybe pain is too much-not sure, but the anger and judgement is so draining..it is hard to think or function , much less stay positive.

Our weather system changes are affecting my condition negatively as well... arthritis and CRPS and all things inflammatory are the targets...
yet I am grateful for the rain because our earth has been parched here for far too long... and I love how dynamic weather is. I would love to be a storm chaser facing the vitality of mother nature and life, haha, in another lifetime perhaps... :)


There... rant rant rant!!!! ERGGGGG!!! AARGH!!!!!!!! OH OKAY! I am okay now and will focus on the love and light that so ever shine. No matter the darkness, there is always light... See the moon and the stars are only reflections of the sun... oh I am rambling to escape...
Hoping all is as well as it can be for you all.

Together we remind ourselves of our strengths and that we aren't as alone, as pain has us feel... I am so grateful for you all here...:grouphug:

Hana

Sad
 

Oh Hana, how unfair life is for you at the minute. I'm sending you the biggest of hugs and praying for you to find some physical and emotional relief. I'm so sad for you, partners have to be willing to be in the journey together, they have moments of doubt and some just can't overcome the doubt and push to put their own needs to the forefront. But right now, with pancreatitis, fever, crps your needs should be front and forward. Be kind to yourself and know you have supporters across the world here. :hug::hug:

Hana,

I so feel for you. I know the feeling of the led legs,burning spine issues,as well as feeling like my walking is so off that my hips hurt, etc., etc.

Before going to bed at night, I started dreading the start of a new day. I really had to push "big Time" to force myself out of bed. One of my biggest concerns was/is the relationship between myself and husband. For a while, i was feeling like he must have ice in his veins and a total lack of compassion.

But, I started praying for us to be closer and more compasionate for one another. His life changed too. He enjoyed vacations, nice dinners. When we do get out, it has to be a quick and get back home soon. As well as pain, I have "potty" isses.

Knowing I have to try even harder to smile or try to crack a bit of a "funny" and maybe give him a hug every now or do something "special" for him. He needed to be felt loved as well. I can't say all is always great; but since I have been trying harder, he has been reaching out to me more. Believe me, I know it isn't easy. I sure hope you and your spouse can get closer relationship. It means so much.

So true; even at times a bit corney,is to take one day at a time. Not to live in fear the day before which wrecks the upcoming day. Easier written than done; but I keep trying.

Today started pretty bad. I set my alarm to take my Oxycontin at 6:00 a.m.,
(take 60mg's every 6 hrs.). I have my pills in a 7 day container with a bottle of water on my nightstand. When I got up about 8:00 a.m., my legs hurt so bad, had chills; just felt terribly sick. Went back to lay down. Then started thinking of hubby wondering whether he should have his coffee, etc. or wait for me. Got back up; but the chills and leg pain and overall and nausea; eventually went back to bed; We were to get together with my family for a birthday; but had to cancel. About 11:30 a..m. decided to look in my pill container because I felt like I was in "withdrawal". Sure enough; my 60 mg. Oxycontin was still in there. It unbelievable that you can go into withdrawal that quickly. Did manage to get a few hugs. He has been startiing to be a little more compasionate too. It means so much.

What Pam says is so true; partners need to journey together.


Gerry

Oh HANA
 

And Pam, and Ger...... I mean, I know this pain path is a two party path in our particular situations, and I ache for you to understand your spouse, Hana, is having what they think is too hard of a time of it. All I can do is reach out to you figuratively and hug... and pray, hoping eyes might be opened to the heart which is loved, for that heart is no different as it is the body which is wracked by pain.

Sure, our lives changed drastically in 2005. Vacations? HAH! Gone. Frivolity with cash such as we had known pre-wreck.... GONE. Goodness in the months leading up to this most recent of fusions I have had Jan 2 of this year, it was all I could do to work. Provide. Then come home, eat, and to bed. Going out. That was gone. Going to church. That was gone. Watching even a movie here at home. That was gone. I could not take it.

Now, we are working to re-establish some semblance of routine again. Church today, followed by lunch out with our kids. That was nice. Then all of the others went out for shopping and such and I went where???? Home, to bed, for a nap. Could not keep the eyelids open.

I pray the rough seas of dealing with your pain situation will even out and calm and that spouses all around will follow the original heart call to support each with the love originally pledged.

Really.... prayin on this,
:grouphug:

It takes two
 

I have to chime in again Hana! my heart really aches for all of us in this life altering scenario we found ourselves in through no fault of our own. As you know I'm having a tough trot, but, not going to give in. I decided with my husband last fortnight that every fortnight on a Tuesday evening I will walk, yes walk, to the high road, or main drag as you may call it in the US of or local town where all the bars, pubs and restaurants are. It's a 15 to 20 minute walk and I will partake in a few glasses of wine so my husband can have a beer or wine and then a meal. He can see I'm making an effort and it's doing something for his morale too, AND I can see he gets back home safely as he is in a dark place with his emotional trauma. He rang today from work to say he is excited to be going tomorrow night, I can't do movies anymore, can't sit for the duration and restaurants have to be quick service as I'm want to come home as soon as I arrive lol. But, he can see I'm trying, and like Gerry mentioned she has seen an improvement in their relationship with her reaching out. We have so many downs, but he is my life essence, and if your partner is the one, try to talk to him to see if you can get a compromise, life is not always greener on the other side, and he may see benefits to being with you that he has forgotten in our pain journey. I know I've been cruel and said to my love, please, put me out of my misery, in 2002 I said use a pillow, the pain was so extreme, I think he began a rethink in those days and while initially he wasn't the best partner on our journey he has become stronger with each incident. Yes it's rocked him to his core and he had his terrible breakdown and was hospitalised 2 yrs ago and on that day I took him to rehab by taxi and checked myself in 5 min up the road to a major hospital for surgery. I came out and he staid in for a month, I got rushed back in 3 weeks later and he had to discharge himself. So many hard times not helped by his selfish family cruel and unusual I call them, but I can show them mercy and pray for them. For your partner Hana, I too have little of that physical side, but, I decided I had to, if not for me for him, not often, but closeness just to hold him feels, reaching out to touch his arm or his shoulder, reminds me of what we once had and I'm determined to get back there. Drugs help, not what they are for, but sometimes needs must, sorry if that's TMI but just trying to say if you can get him to see he is not alone, so many of us and our partners are in the same boat. Our finances are drying up by the minute, my minimum super wage payments will cease in August and I fear where we will be. I will have to go back to work I know, and now, I can't even get my derrière out the door unless it's an absolute destination that I so must go to, and I'm late as it takes me time to psyche myself up. I could easily give up, but I won't, I will not let this ruin what we have, I will continue to try. And it's hard, so very hard. Like you Mark, we had such a good combined income we blew money like nobodies business, we would be all ok if we hadn't done the trips, the cruises, the holidays to see his or my family in different countries over the last 23 years, but there you go. Love is actually. Just like the movie. I'm sure Hana if you can get this pancreatitis under control you will feel a little better. I was going to write and say I'm feeling desperate and horrid, but, you need me more than I need you and again, we are here for you girl. You may have read me writing About singing songs. Belt em out, pick your favourites and belt them, if you can shimmy a little, you know a very sedate shimmy the one our Nan's used to do in their 80's it's the thought that counts. I know you say he can't talk about it, can you write it to him in a card, can you surprise him with something that meant something to you years ago, no pressure, just write it in a card and leave it for him to read in private. If he is the man that you believe to be there with you for this journey then fight for it. I have and alienated half my husbands family, but that's because they are petty and don't like me, big deal, their loss. I fight every day and have been fighting for over 30 years plus, I will not let someone come between us, nor my health, we took our vows and after my first marriage spectacularly imploded I'm not having it on my second. Never give up, you are a fighter, I know this, I can read it between the lines. You go girl, whatever happens, we are here and we totally understand. You can talk to us anytime:grouphug:

Hana, Pam, Ger
 

My heart breaks, truly breaks, at the hurt - the struggle - the enormity of the pain that comes with each new day. This horrible, horrible beast that we all carry on our backs - literally - drains the life not only out of us, but also out of the people around us. So very, very sad . . . my heart breaks for each of you - for myself - for those who struggle to love us through our pain.

My husband - I love him so - and he is such a wonderful blessing in my life . . . he strives every day to take care of me, and to patiently walk beside me as I struggle to put one foot in front of the other. Yet sometimes I catch glimpses into his sense of frustration and anger - not at me - but at the beast. We have committed together to temper our words - to try and stop ourselves from saying anything that is not uplifting or encouraging to our relationship. But we are human, and in his humanness the other day, he snapped at me - said something that was hurtful to me related to my pain. After I had nursed my hurt for a while, I shared with him how his words had effected me and asked him why he said it. He was sad that he had hurt me - and he said his words came from a place within him that was fueled by his inability to "fix" the situation - to take away the pain that I feel day in and day out. I think that those who love us - and who seem to grow weary with us - must also feel this frustration. I think they want so badly for us to get better - not because they are tired of hearing us complain - but because they truly do love us and feel inadequate in their ability to do anything to help. I think sometimes it is easier for them to shut us out - to walk away - than to continually be faced with what they feel is an inadequacy on their part. Oh how I wish that they understood that we don't hold them accountable - that we don't look on them with disdain for not being able to help. That is something they have put on themselves. We don't ask - demand - or even expect them to "fix" us and cure our pain. We simply ask that they walk alongside us when we can walk, and prop us up when we can't.

My heart breaks for you, Hana. For you, Pam. For you, Ger. For all of us who have to deal with not just the physical pain, but also the mental and emotional pain that is inflicted - sometimes on purpose, and sometimes unintentionally - by those we love.

I have no answers, only hugs. Gentle hugs. Understanding hugs.

And hope. I have hope that tomorrow - maybe even today - will be filled with some unexpected blessings that will brighten the paths that we are each walking.

Knowing that y'all are all just a keystroke away is one of those blessings for me.

{hugs}

=Becky

Gratitude for you
 

:circlelove:Just as I think I cannot possibly feel any worse in trying to deal with the beast running around in my body along comes RELIEF!! Thank you all so much for this wonderful outpouring of support, love and care for not only me but my partner as well… tears of gratitude.. .
You are all so right in your understanding of your partners positions in relation to you and your beasts. I definitely think that our beasts become like a sick child that maybe a relationship is not prepared for, ever. It is the elephant in the LR that no one wants to see...All of a sudden there's another person to take care of, and many adjustments to make… Certainly life will never be the same, though my spouse is trying to bargain... Yet, we are survivors and we know this. I can adapt and change, and we can make it through every challenge. And ,still I have fear , wondering what it will be like going forward if I don't have any support. He watches me struggle to function but is not able to help;frozen in time , and I am not knowing if he is able or willing to join me. We've been working in therapy to figure it out, as my trials seem greater, and my errors more glaring.
I still know that we are not our pain. Those who lash out in anger and frustration are in a pain themselves, grieving for their loss and ours, and if we never learned to deal with loss it becomes even more difficult. This is where I am. It is a blessing to me that you are here and you understand. As you say,they are not able to cope And they need as much care love and support as we do. If that's not taken care of, than what comes back to us is more pain as frustrations do not lessen.

Mark, you are right.My partner has always felt the need to fix things… Now unable to fix it. He thinks it's all about him(the beast) and my expression- even ouch!!,feels personal to him. Pain is not acceptable... how lovely that he wishes that for me.. and I for him. I tried in vain many times to express that it wasn't him at all, it was the pain that I have been emoting about. The more I am unable to cope with it from outside appearance, the less functional he is. so when he watches me struggle his frustration rises to a level of lashing out, then blame. It hasn't made sense until now. I was so desperate that I made a recording and share with my therapist. I want to help him so much because I miss his heart and feeling it. I can't tell you how much my heart aches to repair…He There's nothing like the strength we get from love, endorphins overflowing. there is no doubt for either of us that the love is here, just inability to surmount this difficult situation. We do need help in the house and there is resistance to it. I think when our issues are sorted to make more sense That will fall into place. We have 36 years of history and only a few like this.

Becky, Ger Mark Pam, oh my gosh. thanks so much for sharing your relationship stories. It is not TMI... all of it is helpful and encouraging! I'm not giving up.
It is important to do the small nice things and pray for connection. Yes. Seeing couples tx i realized he does not see his own anger. The therapist says it's dissociation, so that is the start.
And I have issues that are out of the ordinary. I am only able to focus on one thing at a time so am always " doing" and because i don't remember how to prep food, am usually in kitchen --- seeming rude and inattentive and praying for the ability to hire some help. I cannot keep up with the house and me. I am so slow that i have no free time. When he gets home and on weekends its time to put feet up ... and i am not done with chores and ready for the outing. I am not the person i was exactly and cannot do what i did. Its different. I get to learn again and i am okay with it. Grateful for a successful meal, .. Anything edible that makes it to the table. 2 years ago i developed chemical sensitivities and food allergies. I had to change everything in my diet. No gluten dairy, onions or tomatoes,and stay away from fat… Geeps my brain can't keep up. Where once a really good cook and chef, i am flat. I cook the same thing every single day.I drive him crazy with the time i take, and as said, it is not okay to emote pain which now, is darned impossible to do. I pray that he will take a real and restful vacation for himself. After 36 years of me planning our travels and being social director... flat,
I have heard "The definition of stupidity is doing the same thing over and over and expect a different result.." Einstein . This has felt like that and i hope therapy or anything can help.

I also have tried in every way to live life to the very fullest… spending my hard-earned money to enjoy moments of vacation and gentler times. Yes that is me to0. I worked very hard and at every opportunity played. I love the outdoors… was a swimmer, skiier bike rider, hiker… tennis player. In fact, those were my endorphin blasts and helped my nerves to be calm and avoid the meds . Now I don't have that outlet and I miss it. In place as I slow I see more of what is in front of me. I take time to appreciate it.. clouds, waves, stars moons and yellow clovers all, and you remind me that life is full and fills my heart and soul. Singing helps a lot to distract as does music for me... I walk about 15 minutes a day and I'm grateful for that.

I pray we are ready for the day. Keep faith. Anything to help. Sing. And LIGHT! There is always light and it is on here! TY!!!!!!!
Much gratitude for you!! :hug::circlelove::grouphug:


Hana

To All of you;

So well written. The "nail" has been hit on the head. We have connected in a way that is beautiful. It's like a commitment to one another to take this day; each day, and make the best of what we can or cannot do; but it's okay. We will try and not give up; soooo, maybe we did some of the things we look back and say should we have???? But at the time; it was good. Maybe that's why we have those years to remember what we had once shared. We know it is still there; just different.

If we can't sing......I'll bet each one of us can hummmm. Right???

p.s.
Hubby is waiting for me to watch a t.v. program with him I had promised him I would do later....Later is here..



Gerry

Scs
 

Hi Hana,
Your fear is in my opinion completely rational, will it work or not but at the end of the day you're only going to know by having it done and if it doesn't work you have it taken out. This is of course the worst case scenario.
Why won't it work, your Doctor has identified your problem areas. He puts in the wires, you behave your self for a while using Marks idea of BLAST and you should be feeling a whole lot better after a few weeks. I found it took me a while to get used two the bzzzz sensation but it was worth it. I think I was more upset when it had to be switched off, I fell in the garden, let's say I hurt another few discs in the Thoracic region, leads didn't go far enough and out it had to come. I guess if I hadn't have a fallen I could still be using it.

I was happy about it and I wasn't afraid of the surgery. I had complete trust in my Doctor and that's important to me and I'd been to theatre so often for procedures and what not, I knew what to expect, I was fine and so will you. I wish and pray the very best and every success for you.

Sinéad :) :grouphug:

:hug: Hana :hug:

That much-needed vent that you posted touched our hearts on so many levels. It breaks my heart knowing that each of us must suffer on a scale in which most people would never be able to comprehend. The physical pain is only a part of the whole. Add in the fact that we must face our worn out emotions, the isolation and loneliness behind our closed doors, the frustration of not being able to live up to the life that we once had, the fear of not knowing how things will go from one day to day to the next, and so much more.

Stimulators, or no stimulators, we are all one in the same....
We come here looking for strength, looking to see if one of us is in need of a shoulder, or even just to see if anyone else here is awake at 4:00 in the morning unable to sleep.

But despite everything, what I see when I log on is a treasure.
So many beautiful things have been uttered here. Mark's poems that float straight from his heart onto the keys he types, leaving a little piece of Heaven to each and every one of us...
The humor that begins to float around on a thread until the next thing we know, we are having a full-fledged cyber party at Pooh's....
....The joy it is when a long lost friend comes back.....(ehem, Sophie :p)

I could go on all night. But like Hana mentioned, I'm getting sore sitting in this chair :eek:

Hana, I lift you and your homefront up in prayer. May the Good Lord bring Peace, and that your partner's heart be opened up with understanding and new possibilities that rise above the frustrations of seeing you suffer.

Sleep well my dear friends....:Zzzz:
Rae

Oh my gosh
 

I have had too much pain to sit in the last week;it's total overwhelm. Oh yes, I have felt one big ball of chaotic emotion and pain... It's all here. :eek: And has arrived all at once! Both : I appreciate so much the support I am receiving, AND I am so slow and cannot keep up.

I am overwhelmed right now. I have to have support at home before I can have surgery, since hubby is absent. My therapist and ours are trying to get some in but partner is fighting it.. me..them.. himself. My heart is in pain. I can't imagine this.

I have a new question or two... like, how much pain is required to be in before and during the stimulator trial? I have pain so far beyond what I was ever able to tolerate when it was really bad,that it scares me.
Yes. I am trying to catch my breath..

Blessings for all...
:grouphug:
Hana

Pain scores
 

Oh Hana, my heart just breaks for you. I'm praying today you will find some much needed relief so very soon. :hug:
Regarding pain levels, before they did the SCS trial on avg my pain sat around an 8. During the trial it was between 4 and 6. Depending on what I did, and remember during the trial you have to be very careful and not do anything to dislodge the leads as they are partially on the outside and can easily catch on something. Removing them was easy, you take a deep breath and they slide them out, no pain on removing at all so don't worry :hug::hug:

overwhelmed.....
 

Thanks Rae. My apologies for having been so heavy. Life has flown by since I saw my internist 6? weeks ago and told her that it was time for new pain management. She said she would make a referral that would take 6 weeks, and I had my appointment within a week :eek: I have been rushing along ever since, and my body is letting me know how bad it feels, and all have suffered from stress.... Yes, BREATHING is in order! Actually, I went to my Adaptive Yoga class and breathed well and I do feel better..:) but more needs doing. I do believe it is the best thing I have done for myself in terms of therapy. At home now that the problems are illuminated I have hope and faith we can work it out. Also, neither of us is alone with this.


As for the stimulator, I would really like the 50% percent relief. I don't think overall it will complete my picture, but if I got any that would be good. They did say a pump could be added to that if needed but... I am not there. I was hoping also to find out if it helps with what I call the structural pain.. ie. bone on bone. I have a 4 mm subluxation of L-3 on L-4, severe central canal stenosis, severe neuroforaminal stenosis etc on down the line. This is the worst spot though. It hurts almost unbearably after 2pm every day. Days are so darn short! I didn't ask because I didn't think of it but also that it may not matter. The surgeon still wants me to try it first as opposed to the pump. Meds have always taken issue with me so I'm not in a rush.

Journal is a great idea especially since I tend to forget pain as soon as it leaves me...;)

I do have faith that everything will work out...

Thanks Rae
Might you all be healing!!! :hug::grouphug:

Hana

oh sweet sweet dear friend
you sooooo know it
lots of love
i am still in limbo
must do repeat MRI
AT 6 WEEK MARK
I AM SCARED
very scared
hoping it has
not progressed
that it stays local
and just be an infection
or even better
they are just wrong
than again that be slim
but it does happen
im so scared
all my joints hurt in my sleep
it wakes me

my gracious Father
awesome Father
hear our prayers

take good care

"...scared... infection
or even better
they are just wrong
than again that be slim
but it does happen
im so scared
all my joints hurt in my sleep
it wakes me...
"Dearest eva...yes, we do know it! I'm sorry you have another MRI, and pray with you for it to be infection or something more easily treated. Waiting can be the hardest part; just not knowing and anticipating is so stressful. We are here with you; after all, your strength and courage carry us so much further every day. Thank you. :hug:

After my anticipating and appointments last week I fell flat on my ****,:eek: and am slow to regain steam. My right leg feels like a shark took a bite out of it and 3 toes are numb. Driving is making it so much worse. I go back again on friday to meet with the PM to discuss the surgical plan and arrangements, although I wont be setting the date just yet(hopefully this is last trip for prep).. It wont be long as this never ending pain is beyond my means. I do pray for 50% relief and if I got more that would be awesome.
I have been overwhelmed and have had to back off a bit to BREATHE and rest. ... At home things are being sorted out as quickly as possible (amazing speed for here) and I am not alone. In fact, when my partner stepped into the door last evening from therapy, the first words I heard were that there will no longer be resistance to getting help in the house... so, one step at a time! I felt a deep sadness and resignation, but no anger, and once we start a new path, I think we will both feel better. I have faith.. we can do it.. I must be patient;believe me a tall order.

Prayers for all pain to be gone, all fears assuaged.:grouphug:
Hana

Hana
thank you so much
it felt good to know i can bring
some help for anyone that gets it
and my prayers continue
we share a heavy cross
we'll make
together
as there is lots of love a prayers
oh the power of the Great I AM
in that flannel worn shirt
and the smell of love
can you feel it
can you smell it
love come over us
heal us dear Father
hear our prayer
my hips ache
let this body rest easily
for all of us
Amen!