Laura,
Allow me to give you my perspective as I took this path for awhile however, I still had my own income w/SSD and LTD which you probably will also if you decide there's need to medically retire..
3/2000~ I had to stop working as I had stayed on my feet for as long as I could and was spending more days down than up. At this point my last spine surgery was in '92 (failed back) and I had been offered a 3 level global fusion and had 2 2nd surgical opinions agreeing w/this.
I layed around mostly crying and feeling depressed as it was an effort to even get up and make myself something to eat or get to the bathroom.. I groaned and moaned nearly every time turning over and felt horrible about my surgical options..
My husband had to "tote" me about in my van or his SUV lying down whenever we went any distance as I couldn't sit for even 5 to 10 minutes because of tailbone pain and LBP...
Everytime family or friends came to visit my pain soared even more as I tried to rouse myself and be a hostess of sorts however, that usually failed and only alcohol could dull the pain I had set upon myself with increased activity as I was given no pain meds. I was on Neurontin since 1998 which had taken the edge off the neuropathic burning pain, but not the #8-10 lbp I lived w/daily.
Finally in 2001 my PCP who was a company doctor I was going to while working the last 5 years told me that she felt I "must" go to Pain Management.
I didn't want to as I was fearful of pain drugs and ESIs however I went and on the first visit I was given a script for Norco and told I had been horribly untreated over the last 9 years for my pain. The Norco made me sick and sleepy so I was put on MS Contin.
Wow!!! Talk about relief! I was able to get up and function so that was really encouraging. Since the MSContin worked so well I was advised to try ESIs which I did and the combination of the meds and the ESIs had me feeling normal in terms of lack of pain~ what a relief after all the years of crippling pain...
So on went the last 4 almost 5 years like this however, a rift between my spouse and I started to occur. Not so much because I couldn't do anything but because I was becoming more active and getting out more (still very limited). In fact, my husband always told me every time I had a painful flareup "see what you've done"~ Well, of course, however, it's been worth it most of the time as I've been in bed so much the past 10 plus years that whenever I could do anything outside and have some fun.. it was practically miraculous to me.
The couch life grows very old very fast and esp. at a young age even tho I was in my early to mid and late 40's and now into my early 50's.
This is just my own personal opinion. I know you've tried so very hard to find out what is wrong and how to fix it if you can so probably you are feeling somewhat defeated that there seems to be no sure or available remedy to correct your spinal situation...
There's nothing wrong with taking it easy as needed for pain, however, remember that bone density may very well be affected should you take up lying about on the couch/bed for a long period of time.
IMHO it's better to rry and utilize some pain medications to keep you active as you are able to be, and hopefully when the right technology is ready so will you be and your bone density won't be an issue and you'll still have some musculature/tone going on to help support your body.
I think if I role played and put my husband (or any member of my family or a good friend) in my spot, I know I would want him to do whatever it took to be as vital and active as he could without increasing his pain level. Regardng work, that is something that if the person can, Ok, if not, that's another thing.. I don't consider it selfish if it's a necessity.
As to whether you can contribute from your bed/home vs. being up and out and part of the community.. surely in some way you can, altho I nearly certain you will see your world grow much smaller and the # of people you have contact with dwindle also.. and I do think that we are a social species for the most part. I think that you would be limiting yourself to a great degree should you just decide to take residence on the bed or couch.. I think this because I've been there. However, as individuals, anything is possible~ tho I hope someone as young as you won't go there...
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