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!!


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

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

Hana

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 )

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

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....
Rae

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. 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...

Hana

Oh Hana, my heart just breaks for you. I'm praying today you will find some much needed relief so very soon.
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

If there ever was a time for a group hug (I mean a REAL one), this is it. Take deeeeep breath, try not to put too much on yourself. It's certainly normal to feel this overwhelmed, but really, when you look back on this period of time, you'll see that things did work themselves out, one thing at a time.
We all know how stress and pain feeds off each other. I'm so sorry you are in this much pain.
Regarding pain levels, the medical staff usually speaks in terms of levels of pain like Pam explains. If your pain is this overwhelming and your stress is at an all-time high, I'd venture to say your pain is pretty high up the scale.

When you do your trial, sometimes they might speak in terms of percentage. Most doctors will want you to get at least 50% of pain relief during your trial. And if you go on to get the implant, they will only guarantee 50% of relief. But that's rather a generic basis of measurement.

One thing I did was write a 'note' to myself explaining how bad things were prior to my implant. I would have this to refer to so I would know whether or not I was worse off or better off with the implant. Keeping any type of journal, even if you only write down the date and a number representing your pain level, is a good thing to have to refer back on.

Keep believing that things will turn around.
Keep that belief and let it override your stress.

Caring!
Rae

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 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!!!

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.

After my anticipating and appointments last week I fell flat on my ****, 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.
Hana