[ElizaJane23]

Hi folks - I was wondering what you would do here? I do a prayer ministry for a group at my church. People email, text or call me with their prayer requests and praises, I correct grammar, spelling and such and email them out to some 100+ people. It's really easy, and it's been great to stay in touch with life these past years as I've been unable to go out much. Anyway, I've put myself on there this past 15 months on the journey to SCS. Most people have never heard of it and just know it can help with my pain. Now I have some nerve pain in my legs but also have a lot! of arthritis pain, and have pain all over my body, not just my lower body. Mind you, I will be thrilled with whatever pain reduction the SCS gives me, but I'm finding that everyone thinks ALL my pain will be gone. I don't want to limit the Lord but this is very unrealistic. I'm finding it difficult to reply when people come up to me saying how wonderful it is that all my pain will finally be gone and I'll be out of my wheelchair and back to my life again! They don't realize there is so much that my life can be better with me still in my chair. I don't want to be a downer about things but I know I'll have a hard time going to church in the month's ahead and seeing everyone wondering why I'm still in my chair, and why am I still disabled? Do I set them straight now, telling them what the SCS can and cannot do? Or do I let it go and not limit their expectations (and prayers)? Wierd question I know - do you all have any advice on this?

[Sandy Kay]

Eliza Jane
I don't think this is a weird question at all. Even in my immediate family and especially my husband all felt that the SCS would remove all my pain and the issues associated with it. My husband had gone to so many appts. And didn't understand that it is only a tool and is not a guaranteed cure.

Like you, I was on our church's prayer tree and many asked why there was still pain. I tell them how SCS works and that there is HOPE for pain relief and that some days it works amazingly well and other days require more meds to help control pain.

I hope and pray that you will find relief beyond your expectations and that everyone will be joyful that your pain will lessen.


Sandy

[yellow]

I've had to deal with this too. It's tricky, because when I've tried to correct some people with more realistic expectations, I've been told I'm being pessimistic and that I need to have a more positive attitude, that I shouldn't be having the surgery then, etc. Some people I knew better than to say anything to. I think it's easier to just wait until after you have the SCS in and you know that it's working for you, because then you have objective data to say "it's giving me a lot of pain relief, it's reduced my pain by this%, I can now do these things that I couldn't do before, I'm on lower doses of medication...", and whatever kind of benefits you get from it. If there are some people though that you feel you can have a logical conversation with, I'd say you can go ahead and tell them now. I'm 22 and I found that my friends, younger adults, understood the realistic aspects of what it would give me a lot better than older adults on average. But that's just my personal experience.

Good luck with however you deal with people, I know it's hard. They have good intentions and they're trying to be helpful, but unless someone goes to the doctor's appointments and hears everything you hear it can be hard for them to understand.

[Mark56]

I praise God openly in front of all whom I know regarding the PAIN MANAGEMENT with which I am assisted, and through time, they have come to recognize while the good grace of the Father's help has given me means to practice law again because I no longer take opiates or nerve meds and have no prescriptions for pain meds so thei mind is clear, those who know me in the person, eye to eye, understand there are days which are better than others, because I have explained to them the pain was not TAKEN AWAY, it is managed by the technology..... managed not magicked [phonetic spelling purposeful].

Those who see me know I must use a cane or a wheelchair because I have no feeling below the knees since my nerves are permanently damaged. These who have listened as i patiently explained understand I did not experience a mystery of life such as Jesus causing the lame man to walk. They know I must use the devices to assist as they see me sing with the worship team most every week and I am joyful about likting my voice to the Lord. It is right to give Him thanks and praise, because through this miracle of medical hope, my family feels hopeful for a future they thought we had lost with my car wreck. I feel blessed and grace filled as one who may now reach out to help others instead of be bound to my bed by the horrific pain.

Reasonable expectations? They include friends sitting in church side by side kidding one another about their batteries repelling one another, the means to visit someone who is ill in hospital and now we have the means to go and share a smile and some time, the relief that God made inventinos possible to avail of the pain lamed to rise once again and walk..... this is the theme of the book I am writing to chronicle this stuff for the real world out there if folks will read it. SCS is miraculous and its results different for each recipient, some not so good at all, but we who feel blessed can show others by our lives we are blessed indeed whether they take solace or not.

Isn't it interesting the manner in which some offer prayer??? Like as if it is a Santa list rather than a worshipful conversation with the Father during which we give thanks and praise while entering as well supplications for others and some for ourselves? Christmas is the very celebration of that gift of life with God so much more so than the gimmee list of a song I heard on the radio a few moments ago.

You all bless me so much reading your shared words.
Amen,
Mark56

[Ananimity]

My significant other expects this unit to take away ALL of my pain, even though three surgeons have told me that I will always have pain, and will always need some pain med help.
I'm thankful I can have the implant as an additional tool, in my arsenal. With time, I hope to be able to do more.
Blessings to you on your continued ministry. It is hard to explain (in a short description) what the stim is and does, so that friends understand.
I used to be involved in a ministry at a couple of churches, but couldn't sit long enough during the three+ hour meetings. Many of the church folk got upset that I backed out of leadership. lol Got dirty looks, and was just completely ignored. My true friends are still praying and texting me. Thank God!!

[Rrae]

What a great thread! I'm so glad you bring this up because I'm pretty sure we all deal with this to some extent. It IS frustrating.
Most people have no idea what an SCS is and it seems futile to try to explain it to certain people. Number one, they don't comprehend what our pain condition is all about, let alone this strange device.
I like what Yellow has to say and I can sure relate to the 'pessimistic' thing.
I go to a faith-filled evangelical church and several people are of the mind of "Why are you confessing you have PAIN!...you should be confessing you are HEALED!" I understand what they are saying but this pain is REAL and it affects my life tremendously and I need to face it, not deny it. yes?
So, when people ask me about my pain, I usually just say that I am trusting God to heal me, but for now this is how I'm feeling....

I usually tell people that the pain is still here, it's just that the SCS 'covers over' the pain, not take it away. Also I mention that some days are better than others and that I do get breakthru pain and flares, etc.
Like what you mention, Eliza, regarding the arthritis and other pain issues...perhaps try to explain that the SCS is for 'such and such' pain (in my case lower extremeties), but there are other types of pain involved as well, in which the SCS isn't able to address. If they are open to comprehending what you are saying, then great. But if it seems to go way over their head, then I just realize that no matter what, they aren't going to understand, so I keep it simple and leave it at that.

Anyway, this is a great discussion and I'm glad to be able to talk about it.
I'm so grateful for this place that we can all come together and understand each other. It's just nice knowing that there ARE people who really 'get it'.

I do understand the situation you are in, where people look up to you as a prayer warrior. You don't want to cast 'doubt' on things, yet this pain you feel is very very real.

Rae