[rscowboy2005]

I want to talk to talk about about loss.

I spent Labor Day weekend at a church retreat at Menucha.

http://www.menucha.org/

I have a meat loaf in the oven, but been thinking about this post for almost 24 hours, so decided to start writing it.

I talked with my wife until late hours last night. The retreat was good for me. I turned off my cell phone and stayed away from the computer for most of the time { I did have some time to work on the documentary and check the Ducks game score }, but it was nice to focus elsewhere, especially the beauty.

There was lots of walking; whenever I was in a location to do so, I took off my Nikes and wore my Russian slippers { because the freedom from any shoes is worth the odd effort }. The workshop leader did a good job of breaking into small groups for discussion; it was a good opportunity for me to meet members because I am considering church membership. If I was changing into my slippers, I felt compelled to explain “I have a rare foot condition”. At least to the first couple of groups. I accepted one ride down the hill to a group meeting, but otherwise walked everywhere. Slowly, but across the grass and along the roads, I walked.

When I compare my condition to a year ago, I can easily see the rate of progression. I may have the pain slightly managed, but the disease rolls on.
My biggest fear is happening. My mobility is impaired. I am getting older.
I fear I can no longer do the work that I have done for the majority of my life.
It is that realization that probably hits the hardest.

Yes, I will get the ssdi application in – maybe even by October 1.

But what comes after? My wife is preparing for work, but she will not be ready for at least six months. We’ve made a rough draft budget and even after it is approved there is a gap.

Because of my field, there is a window of opportunity to not get re-licensed but what comes next?

I would welcome stories of experience, strength and hope about your transition at that time when you had to leave your work.

And of course, all prayers gratefully received.

CB

[Ladysheets]

CB,
my heart goes out to you.I too have PN and it is also getting worse. I have been trying to get SSDI now for 4 years. I am 46 and am using a cane when i walk very far at all.They system is so backlogged that i advise getting you app. in asap. Some get approved right away and some like myself have a much harder time. My age and the fact that i was trying to keep working really went against me. I was working 13 hours a week trying to keep food on the table and bills paid and the judge at the hearing said if i could do that i could still work and earn a living. i was denied. I applyed again and am now at the Hearing stage here in alaska which is a long long wait. So far i have been waiting for a hearing for 15 months.

Im happy you enjoyed your camp and may be joining the church. you wont regret it. God is a powerful force in our lives. I can go a day without his care.

prayers going up for you
God Bless, ladysheets

[cyclelops]

I have heard the average time for fruition is roughly 3 years. I imagine it gets worse as the boomers age.

You did not mention if you are having your PN treated...If you are using meds? There are meds out there that could possibly help you hang in longer?

[nide44]

You did not mention your 'chosen field' f work, but get re-licensed-even if you don't use it. You may have to in the future. most work areas have room for a reduced/semi-retired, cut back in work needs. You could fit in there. Your progression could be halted, unexpectedly- with proper treatment, meds & supplements & you could be left with abilities you had not anticipated.
Don't second-guess this affliction. It can change overnite- either way.
Keep up the faith.

[mrsD]

I would say to keep your license. That is what I am doing.

I did try to find work that allowed me to change positions often....but that didn't really work for me. The stress was worse in return and the stress made me feel sicker.

So I retired ....but I keep my license...because one never knows what the future holds. I keep up with my CE..on the net, and here as well to stay mentally sharp.

I do think retreats are good for reducing stress, so you can see when you return what is really happening to you. That is why I love our summer place...primative though it may be, it does seem to rejuvenate me unlike other vacations which tend to make me more tired. The clean air alone is fantastic and I always get a mega dose of sun and hence Vit D.

I am going to apply for SS next year, when I'll be 65. Right now we live on hubby's salary... for 30+ yrs we had both of us working. But keeping costs down here has helped with the $$ somewhat.

Each person has to find their own answers however. It is tough.
That first year after I quit I was pretty down. But no longer.
Places still call me to come back!

[SandynRandy]

I hope you found a bit of a lift with all the advice to keep your license, and I agree. I had struggled with SSD (a long story), but since my husband's PN rendered him blind, he got an automatic approval for disability. It helps, but as his PCP said, "It's never enough." What's helped me plan financially, and deal with our inability to keep up with our bills, is listening to, and visiting the website of Dave Ramsey.nnHe recommends (as an aside, not his whole schtick - his main claim to fame is Financial Peace University, often taught at churches) creating your own income by putting your interests to work. I've started to plan how Randy and I can use our experience and limitations so that I can pick up where he left off with our business. There's a book Dave recommends with a title like 48 Days to the Job you Love, which I'm about to look for to read and if I'm not breaking any posting rules, will report back.

And, MrsD has never steered Randy and I wrong with her thoughtful advice! I always get a warm feeling when I see her name.

[cyclelops]

I keep my license active too....even if I can't open a bandaid.

[rscowboy2005]

It seems as though the time is too short for me to get all done that is necessary to do before I can "bow out" by December 31. Too short for the kind of work I do and too short for our family stability. I don't want to do one more year, but I suppose I can (particularly if a smooth transition path is laid out).

I don't think I'd have any trouble making at least enough to cover the household expense gap between ssdi and our needs... and not from just contributions for our body paintings, either.

I could go "inactive" and not have to pay the liability insurance and then if I wanted to get it back, simply pay a reinstatement fee.

My friend, Tom, stopped his profession (and became a Trader Joe's crew member), but continued to pay full fare for his licenses (he was licensed in several states) for at least 4 years. In part because he couldn't let go so easily.

And the losses with PN just keep comin' {blindness is a possible effect??). It just suddenly stared me in the face that I have lost tremendous mobility (with more to come) and that I can only think at 10% of the rate and level I used to (ok, maybe I'm exaggerating).

Thanks for comments and prayers... there aren't a whole lot of people intimately familiar with this particular disease and support from those who know is doubly gratifying.

CB

[rscowboy2005]

And with that last post I lost the "Junior" adjective. Yes!

[dahlek]

You hit a HUNDRED!
No longer an ingenue....? - j