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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Beloved.
I have sent mail, studied, etc. been on phone.
I think it has been three days, since the stick below the tailbone. maybe.. I can mow just a little bit, while here at the church.
I get crampy, I break out in a sweat, I almost puke, I can't breath, i ache all stinking over. Everything spins..
Lin spends $4,000 to hear that I can't mow the grass at church???
When will it end.....
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Decorated_AS_Kicker
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Decorated_AS_Kicker
Joined: Apr 2009
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Had a conversation with my son today. There is a family here that are lifelong friends. They are very good people. All their lives they have helped anyone in need. One of their sons was robbed three years ago,and he was hit in the back of the head with a 2X4. He died a year later of complications from his injury. Their oldest daughter just died from food poisioning three months ago. I saw Larry and his wife this last sunday just after they attended sunday services. He shook my hand and wanted to know how my wife was and could they do any thing for us.
I asked Jake why it was some of the worst things happen to the best people. Jake looked at me and said I don't know Dad but you do see people suffer through horrible trials, I don't think it is our place to judge wether they are good or bad people. The pain and hurt is a trial for us all. We all need to push on and overcome the obstacles placed in our path for we are all here for a reason.
I think I am starting to realize why I hang out on the back row while Jake has no problem sitting up front. Hang on my friend there are many things for you to accomplish in this life.
ETTE.
Darrel.
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Joined: Dec 2008
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Joined: Dec 2008
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Lon - how long was it supposed to take for that long needle/shot to take effect? It sounds like you're not improving - are you getting any benefit from it yet? Really sorry to hear how poorly you're doing. 
Wendy
Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Lon, i hate to see you doing so poorly  you sound the way i felt this past fall, i wondered the same thing, but things did turn around for me, for now, i hope and pray the same for you
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Sep 2001
Posts: 2,762
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Joined: Sep 2001
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Good Morning Lon
I'm sorry to hear that you are still suffering. I was praying that the injection would help you.
It could be that its just time to pass along the mowing duties to some of the younger members of your congregation. At our church the men have a monthly rotation for caring for the church yard, the shelter house, etc. and the ladies rotate through inside cleaning and baking duties. And a group also rotates monthly for taking communion to those in the nursing homes and shut ins. It works out very well and spreads the duties around so that nobody has to tackle a big chore alone. Just a thought my friend.
I pray that your doctors can help you and Lin find the answers and the relief that you want and deserve. You are great people your love and caring for your fellow man is well known.
You are very loved here.
I woke up this morning to find my little crippled white tail buck out back enjoying a moment at the mineral block that I keep at the edge of the trees in the back yard. He got hit by a car last winter and has a bum from leg now.
Haven't seen nor heard anything from the coyotes in awhile, but the fox are back so I guess they have moved out of the area for awhile. Dad still has a family of bobcats staying on his farm. He has caught them on game cameras several times recently.
Keep Kickin'AS Chris 
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Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Nov 2009
Posts: 378 |
Beloved.
I have sent mail, studied, etc. been on phone.
I think it has been three days, since the stick below the tailbone. maybe.. I can mow just a little bit, while here at the church.
I get crampy, I break out in a sweat, I almost puke, I can't breath, i ache all stinking over. Everything spins..
Lin spends $4,000 to hear that I can't mow the grass at church???
When will it end.....
It doesn't end, Lon, it never ends, whether it be pain, life, or the after-life....;-( And the pain, Wow! It can be all consuming, life changing, and for you, on your side of the world, the expense of a diagnosis’s, therapy, help, surgery...it's mind boggling; everything costs at every turn And yet... Life, with all it's joys, with all it's pains, is still something to be embraced, welcomed - no matter how much it hurts. Take heart by much you are loved. Hugs
Last edited by Irish; 06/13/10 01:13 AM.
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Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
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My thoughts and prayers are with you and Lin. God won't give us more than we can handle, so if it makes you feel any better, God must think you are a ROCKSTAR!! (And so do I.)
Gentle Hugs,
Donette
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ironchef
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ironchef
Joined: Aug 2003
Posts: 2,717 |
br'er lon
well bubba. i like the idea of having some youngsters do the mowing; it's not like your superlon; you don't have to do everything, more powerful than a steam locomotive, faster than a speeding bullet, able to leap tall buildings.
teach good teachings, make great homilies, comfort the dire and desperate (including yourself)...be good, true to yourself and that which youcan...smell the peonies (if your snow's melted)
i'd send a prayer but that phone is disconnected and your roof might fall in.
so a hug and all my best
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Darrel,
So when I head down there some day, will Jake be in the neighborhood?????
I sure have a lot more questions than answers.
I am feeling a bit stronger today.
I am determined to beat this thing...
listen call you hear the mountains calling.......
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Wendy-
I am better.
3 hour nap after church.....
How are you? How long of a ferry ride do you take?
I told Lin you might come to visit, and your hubby could measure out our kitchen and then ship them to us when he is done....lol
Thanks,
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Sue,
I am glad that you are better.
Now my turn?
I am better today..
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Chris,
Good ideas.
We have had some volunteers.
I wanted to get a bit done between rains.....
I may see if my back will stand the archery this year..
then I can get out a .month early and relax?
How is the fam
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Iris,
of course you are right
I was just an bit beat down.
How is it with you?
Thanks
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Donette,
Nice to hear from you.
I had just had it for a while.
Better now.
I would say that god thinks I am funny.........
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Dec 2008
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Hi Lon, I seem to be settling down a bit at the 5mg of pred so maybe the mtx will work out after all. My ferry ride takes about 10 minutes but, if I'm walking on, I need to be there a good 5 minutes before it leaves. If I'm driving on, I need to be in the line-up a good 30 minutes before it leaves so that gets to be a bit time consuming. I told my hubby about your requests for coffins and kitchens - he had a good old laugh. 
Wendy
Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Wendy,
Yea, I am joking about kitchens, coffin with hinges, I will take. and the trip to visit is always open....
Like I say, small modest house, but I know the conversation would be a memory maker!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Dec 2008
Posts: 5,231
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Joined: Dec 2008
Posts: 5,231 |
I should bring all the grandchildren for horsey rides
Wendy
Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Wendy,
a family that lives on the edge of the black Hills have a"pony" type horse for the kids...
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Jul 2003
Posts: 2,962
Presidential_AS_Kicker
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Presidential_AS_Kicker
Joined: Jul 2003
Posts: 2,962 |
Hey Lon, You need two things. An ice cold glass of lemonade and a lawn-chair. You could use those as you watch a kiddo cut the lawn for you. When I was a kid I would have done it for $5 dollars. oh wait, that would have been 25 years ago. Add another $1.99 for inflation.  Take your time Lon. Summer has just started. PS. I read you have a big back yard.  Take care, James
HLA-B27+, JRA diagnosis in 1981, re-diagnosed as AS in 1988. Also iritis, colitis, and psoriasis. NSD + low carb helps me. My health makes it hard for me to post in a timely way.
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
James,
yep, that was pretty good!
It was like a nano second and then the light hit!
How are you today?
I may go home early and sit in the sun a bit!!!
Thanks for posting... lol
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Jul 2003
Posts: 2,962
Presidential_AS_Kicker
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Presidential_AS_Kicker
Joined: Jul 2003
Posts: 2,962 |
Hi Lon, I have been doing pretty good. Enbrel is going well too. Since you asked... My doctor says I reached 180 pounds, which isn't that heavy, except to short people like me. Brenda traded off her red high mileage car, for another red high mileage car, which overheated the day after she bought it. (wait this gets better!) It was repaired for free by the dealer and has been doing well ever since. Oddly enough, overheating was the reason why we decided to trade in our car lol. We were upfront to the dealer about the other car's overheating problem, which makes me feel even better inside. Bucket seats and sunroofs make me happy enough to go for rides. They almost convinced me to drive it in the parking lot. Maybe tomorrow if it isn't too hot outside. Take care Lon, James
Last edited by JamesB; 06/15/10 09:09 PM.
HLA-B27+, JRA diagnosis in 1981, re-diagnosed as AS in 1988. Also iritis, colitis, and psoriasis. NSD + low carb helps me. My health makes it hard for me to post in a timely way.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
James,
I sure hope you feel good enough to do some driving.
You might try flushing your radiator.. or changing the antifreeze... or the thermostat...
I suddenly put on more weight. I think I need to get a better diuretic, cause I also have more trouble breathing
Nice to see you James.
Your friend
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
For those who are follwing this...
I am now on a better diuretic, I was not using my inhaler enough. So I am beginning to exercise more than I was.
But I do miss my dog. I know I will never feel great, but I do think I am a blessed man and will continue to do everything I can to stay alert and be effective
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Posts: 1,731 Likes: 1
Diamond_AS_Kicker
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Diamond_AS_Kicker
Joined: Oct 2007
Posts: 1,731 Likes: 1 |
I do hope you feel better and am saying a prayer for you right now!
______________________
Jan
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Jan,
are you kidding me.
Wow a friend, indeed. I am a bit weathered right now - thank you!
Let me know if I can help you any time??
Storm coming in, so I will have snow to scoop.
How are you doing, and what are you doing to keep busy.
Last edited by Lon; 01/31/11 02:46 AM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Beloved,
An update, tho no one has posted.
There are days when i can feel every bone and joint, because of the pain But I am able to work, I can walk the dog twice a day and i am ble to scope a bit of manure'. So allin all I am thankful for what I have, the blessings I enjoy and I look to the future with a desire to be effective and to change my world. Let's pray for each other, ok?
It did not freeze here, last night, firs time this year...
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Posts: 3,016
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Jan 2006
Posts: 3,016 |
Yes, let's pray for each other
Had some wet snowflakes last night
" That which does not kill me only makes me stronger"
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,186 Likes: 7 |
Sending hugs your way, dear Lon.
Warm hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
more huggs! you are in my thoughts
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Cindy,
Thanks, I do pray for you and those in pain.
I had a lot of snow yesterday, but the wind melted the snow!
agape'
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Kat thanks for the hugs.
It has been rough, but you know about that.
agape'
Lon
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Posts: 8,397 |
Sue,
and how are you?
Will you be teaching this summer?
Thanks again
agape'
Lon
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
hi lon, good to see you no teaching for the summer, just my research students and me, in the lab, and me trying to get a few papers out so i can renew my grant soon. but nice to focus on the research without trying to juggle teaching as well. beautiful sunny spring day here, 67 degrees, birds singing, trees and flowers in bloom. how are things in your neck of the woods?
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Sue,
more snow yesterday, but melted by evening.
35* this morning, I rode the harley any way.
My neck is bad again. So I put off the lower back fusion.
Funny how you think it won't get much worse, then it does.
I have a new granddaughter here in town.
My son is clean and sober, working and doing better.
Thanks for even caring.
agape'
Lon
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Supreme_AS_Kicker
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Supreme_AS_Kicker
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Posts: 4,501 Likes: 1 |
That's mostly good news, the new granddaughter and your son doing well.  Sorry the neck is bad again. Why put off the lower back fusion? We had A/C on earlier in the week when it was 90. For the past few nights, it's been down in 40s and we finally had to put the heat back on last night. Grrrr. Bring on spring...TO STAY.  Glad you got to ride. My DH rides-but I only ride as a passenger. And I don't like to unless it's above 75. Got the leathers, but it's too warm to stay in leathers when we stop. At 75, I don't need them, just long sleeves. Stay safe and as healthy as you can. And we all care about you, Lon.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
rumble,
"Why put off the lower back fusion?"...
I guess I am scared. He said it would be a long recovery, with my neck so very painful, I know I get the "blues"... right now my neck pain is far out front of the lower back..
But now, dear friend you have me thinking..
How are things with you?
I rode the Harley, but it is cold. I did not have gloves and my leather coat has a broken zipper.....
Your friend,
Lon
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Supreme_AS_Kicker
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Supreme_AS_Kicker
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Just opened this forum again....saw your answer.
Any more thoughts on doing the fusion? How's your neck? Hope someone can find a way to make you more comfortable, but you may have to step out of your comfort zone and let them help you. May be simplistic, I'm sorry.
As for me, wow. Short version: spent a month getting over an abscess on cheek, off all treatments during that time. Antibiotics were a pain in the gut. During that time, my DH was diagnosed with prostate cancer. He is getting the fiducials implanted next week to begin radiation in the near future. I had toe surgery last Monday to straighten 4th toes on each foot so I can wear shoes without so much pain. (Hammertoes) Other than that, waiting for Enbrel to be approved since Remicade didn't work. OTher than that, glad it's warm (or hot, as the case may be...98 tomorrow). Glad we have good medical insurance and that I've got a job.
Hugs to you, Lon.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
rumble,
The injections do not seem to have done much.
He wanted to do mor einjections Tuesday.
But I told Lin I was ready for the big surgery.
50 years of back ache has done me in.
I have a a grandaughter and her mom living with us. We enjoy the baby, she is a doll.
I do walk the baby in the stroller, and I hope to get a pass at the Rec. center. and swim.
How is your hubby?
agape'
Lon
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Imperial_AS_Kicker
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Imperial_AS_Kicker
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Oh Lon, when do you think you will have the surgery? I'm heading for that too next month. Maybe we can compare notes and hold each other up.
Cindy
" That which does not kill me only makes me stronger"
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
lon, sorry those injections did not work for you hoping surgery does!
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Posts: 232
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Posts: 232 |
Hi Lon,
Hope you are well today - I was away from the forum for a while and always followed your posts before. Sending white lite to you
best regards, Lucy
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Cindy, my dear friend.
I just passed on a set of injections for tomorrow.
I was hoping to hunt in the woods in september for a week and then see if I can get my fusion. When he is done, I will have 6 fused, so I am a bit worried about that....
Lin said that it will probably mean the end of my working....
Tell me about your situation??
Where is your pain?
agape'
Lon
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Sue,
I am to the point where it is hard to smile and I just almost cry out in pain..
How are you feeling? I read some of your responces, but I lack the time to post, and I just can not sit that much..
thanks sue
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Lucy,
Where have you been?
Nice to see you again! thoughtful of you to send some warmth my way.
A patienty has given my wife, a beutiful huge egg, that is painted,is just geourgous. is that kind of what you collect?
Have you had a good summer?
Your old friend,
Lon
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Very_Addicted_to_AS_Kickin
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don't worry about writing, just do what you can, when you can i'll pray for you to get some relief soon. please pray for me too. my ribs are acting up again, lodging themselves under my shoulder blade. its been a really rough week. the week before it was my SI joint. i'll get through it. but you're right, it gets harder and harder, the longer it goes on. but hoping new rheumy will give me a miracle drug, could use a miracle right about now. but that's the pain talking. just need to get through this spell. at least my flares don't last on and on anymore, not like what you've had to endure lately. prayers for all of us
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Sue,
The way you described your pain under your shoulder, seems really familiar. never knew what it was. I gripe a lot, but I was able to get on my Harley and ride to work. I can get on my knees and look for tomatoes..
The injections help for a while, but something always gets much worse... It may be from a bit more exercise????? Once my leg pain was better, then my foot started throbbing!!!!
But I am almost at a loss for picking up my grand daughter off the floor, when she has been in her activity center.
Thanks Sue,
agape'
Lon
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Very_Addicted_to_AS_Kickin
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lon, you must have said a prayer for me, cause i think the chiro was able to finally give me a bit of relief today  not out of the woods on it, but not feeling so hopeless now! hope you get some relief soon too, i'll pray harder!
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Gold_AS_Kicker
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How are you feeling today Lon?
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Very_Addicted_to_AS_Kickin
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Donette,
How nice of you to ask.
I did the 30 minute walk with Lin, my back was very tight and the leg pain is nearly unbearable, but I just kept walking..
How was your last treatment at the mine?
Will you do it again?
The Sturgis rally is on, thousands of Harley riders from all over the world are in this area. All kinds of people are driivng thorugh Gillette. My little sporster looks like a toy compared to the big hogs!!!!
Agape'
Lon
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I have to stop frequently while walking and bend over to stretch my back. Mine does the same thing. You are a trooper to keep it up for 30 minutes. Whew.
I have been flaring hard since leaving the mine. I felt awesome the 2 days after I got home, but then it hit hard. They say 8-12 weeks of flare and then boom, remission. I had a 5 week remission the first time. I've been home for 9 weeks now. I kind of think the only thing that is ever going to help me is learning to control what I put in my mouth. ahhhhhh. the lessons of life. i wake up each day and start the diet over, i do pretty well most of the time. i did eat a cupcake or two this week over my birthday. maybe i should learn how to make a chicken and lettuce cupcake! lol.
I would love to see those harleys! love the sound of a group of them rumbling past. my son loves it too. he has a harley bed spread and I made him some flame curtains to match.
Take Care,
Donette
p.s. i guess it depends on if I get some results out of the mine this time. i may go back. it is nice and relaxing there. and the treatment does seem to do good things.
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Hey Lon, I'm glad to hear you are going to try and get some hunting in first. I have not been able to hike at all since last fall due to the intense back and leg pain so I'm ready to agree with the surgery. At this point, I'm not sure how many he will be fusing. I had an MRI, then xrays, now I have to have CT scans next week then make the 200 mile treck back down to talk to my surgeon again in a few weeks. Will let you know.
take care my friend
Cindy
" That which does not kill me only makes me stronger"
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Cindy,
I am afraid that I will not be able to hunt, because of the un certainty of this right leg. But if I go my own pace, I do pretty well.
It sounds like your medical care is a bit complicated... The driving is rough. I do have a friend that drives me, and I feel so much better, it is 130 miles one way...
I will keep you in my prayers.
Br'er Lon
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Major_AS_Kicker
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Hi lon, it's nice to see you posting. I'm glad you can still get down to pick your tomatoes. I lost most of my garden when some deer found a weak spot in the fence and ate a lot of my plants. The managed to eat all the tomatoes, red and green plus enough of the plant to get the blossoms too. I managed to fix the fence and have been taking car of the plants and they are finally coming back. I am glad that the colder weather doesn't come till November, cause I'm not sure I will have enough tomatoes to can up a couple batches of my salsa. I might have to buy some tomatoes if my friends don't bring over some. I spoiled my family and now they don't want to eat store bought salsa. My AS has been flaring a lot, so it's going to be hard to do a lot of canning. Just keeping the weeds out of the garden has been a challenge.
I hope you start feeling better, I hope the hunting trip goes well.
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
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Supreme_AS_Kicker
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rumble,
The injections do not seem to have done much.
He wanted to do mor einjections Tuesday.
But I told Lin I was ready for the big surgery.
50 years of back ache has done me in.
I have a a grandaughter and her mom living with us. We enjoy the baby, she is a doll.
I do walk the baby in the stroller, and I hope to get a pass at the Rec. center. and swim.
How is your hubby?
agape'
Lon Sorry the procedures didn't work for you, Lon. Surgery seems the only option now? If you are sure, I pray it will be the best for you. A grandbaby in the house sounds fun. Is it fun for you? My husband is starting his radiation treatments in the morning. He's quite agitated about this and I've taken off work tomorrow (at the least) to stay with him in the evening after this first treatment. He is doing CyberKnife radiation and will have 5 treatments instead of the usual 40+ fractionated treatments over 9 weeks. With CK, he will be done in a week and a half. Then the agonizing wait for the PSAs to bottom out. He's also on the hormone blockade and is struggling with that, too. He has bemoaned the fact that he needs to put his affairs in order so I don't have problems when he is gone. I gently remind him that we are far from needing to worry about that, but he persists. He's taking an antidepressant and sleeping med, also has anxiety meds from the rad/oncologist. So if you (and anyone else here) have a few spare prayers, we would appreciate it. 'Where 2 or more are gathered in His name....' Thanks for asking, Lon.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Donna,
Those pesky deer!
They are big mice, they can ruin eveything!
Maybe you need to make some deer jerky???
I needed two more weeks of warm evening weather, but we have a lot of green tomatoes, and are getting 7-8 a week. The rabbits ate all my strawberries..
Both knees are suddenly very painful, so I may not be doing much this fall..
Nice to hear from you.
Lon
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Rumble,
I am sad to hear about your hubby.
I do understand about his concern aobut not being able to take care of you. But once we go with a treatment, we just have to accept it and do our best, yet the doubt sets in.
I sure will pray for him and for you!!!
I agree with him in that, making sure all the things are in mutual ownership, makes it so much easier. He will rest better knowing that he has done ALL he could!
Please keep me posted.
Remind him that love grows deeper when we go thorugh our darkest hour with those we love!
May the Lord Bless you and Keep You, may his countenance shine upon you!
Br'er Lon
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Very_Addicted_to_AS_Kickin
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rumble, i too am praying for you and your husband
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Posts: 4,501 Likes: 1
Supreme_AS_Kicker
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Thanks, guys/gals. He did exceptionally badly the first day, but the 2nd day was today and it was much easier on him. Part of that was due to knowing what was happening. First day was a big mystery till it was over.
Lon, big hugs to you.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
rumble,
I continue to pray for both of you.
Tell me we care and he is not alone.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Captain_AS_Kicker
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Captain_AS_Kicker
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Many prayer's headed your way. God be with us all as we have a lot to endure. Thankfully He is with us. Keep us updated.
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Pea,
Thank you so much!
You and the others are such a help.
How is it with you?
Nice ot meet you!
Agape'
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Bit of an update,
I have been reading about the findings of the brain scan.
Then I realized I have had those stinging sharp stabs in my lower body for about 7-8 months.
One more sign of brain change.
I am thankful for what I have been able to do as a gimp, there have been many blessings and have seen some real changes in the lives of friends.
I am a bit concerned about losing my memory, about being in pain and not being able to tell anyone. But so far things have taken care of them selves or God has watched out for me.
Blessings and peace to you all!
Lon
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Supreme_AS_Kicker
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Supreme_AS_Kicker
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Isn't it cool how God watches out for us? When we have a question, He manages to answer it. Hope you find your answer soon and not have to worry. Hugs to you.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Posts: 8,397 |
rumble,
I think you have more peace than I do.
I appreciate all the love and guidance I have gotten form the Lord, the things he has lead me to do and the protection I have given to his children.
But I need to get this idea out of my mind, I could have done better, iff, if only..
DH is in my prayers
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Supreme_AS_Kicker
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Supreme_AS_Kicker
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Oh, Lon...don't go there...don't do the 'if only' to yourself. We make the best decisions we can, at the time we make them, with the information we have. I've done 'if only', 'why didn't I', etc, over past issues and all it does is leave me depressed. It changes ABSOLUTELY NOTHING about the problem.
You are right...you need to get that out of your mind. Hugs to you, Lon. I know you know all of these, but want to share with you.....
English Standard Version (©2001)
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.
Jeremiah 29:11 ESV
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.
"He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock, And established my steps." (Psalms 40:2, NKJV)
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Rumble,
My dear friend. thank you.
I was in such pain today. But after adult class I said my prayer and went up stairs for church. things started slow, people coming in late. but it was relaxing and when it was time for me to preach, i had only 12 minutes... so we laughed and then got into the "I AM" of Jesus = I Am the Gate. It was fun more laughter, and a young woman came forward, more testimonies and appreciation.
At my worst, God took over and did something wonderful!
Prayers for you and for DH!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
My appointment for the brain Dr. is Wednesday. neurologist.
how bad is it to b abnormal? I was just getting used to it....
i saw stars the year I was sick my sophomore year in school. Maybe this is why, my own fireworks show...
I bury a 21 YEAR OLD tomorrow, high speed, drunk driving, not married, many girl friends, and a 6 year old son. I am sure glad I woke up and saw the light.... such heart broken people, now to pick up the pieces.
I have been so blessed and so loved, I am humbled by what I have received.
Lon
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Supreme_AS_Kicker
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Oh Lon....hugs on burying a 21y/o father. Probably one of the more difficult things to do as a minister. And prayers on your doc visit on Wednesday. Hope you have your questions understood and answered.
DH had a PSA done today and it was quite a bit lower than before his radiation treatments. Praise the Lord.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
rumble,
P T L concerning your husbands blood work!
It is nice to have some good news.
How are you feeling?
Yes, I need to write down my questions?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Supreme_AS_Kicker
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Definitely write all of them on paper. As for me...back on MTX for 6 weeks and the flare that's lasted 2.5 months may be lessening. Have also had 2 injections of Enbrel (2nd one yesterday) and hope it does 'something good.' Pain doc is trying to beat my back and SI pain into submission..LOL..a work in progress. Wish she could do the same for my feet/legs.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Captain_AS_Kicker
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Captain_AS_Kicker
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Ron,
How did your brain scan go? Any result's yet?
Pea
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Pea,
The Dr. said that he thinks my blood pressure has caused the white matter (deadcells). But they are doing more blood work and will have more exrays in the future- for comparision.
They may begin the memory tests..
Thanks for asking.
How is your hubby? and how are you feeling?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Captain_AS_Kicker
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Captain_AS_Kicker
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Thank's for the update my friend. Wow, I didn't know that blood pressure could do that. I guess you find out those thing's when they happen to you. I am so sorry that you have yet another thing to worry about. Praying for you Ron.
Thank's for asking about my husband and I. We are still waiting for our marriage counselor to get back from a family emergency. It should be another week. It is hard but we are trying to turn it over everyday to the Lord. I am having residual pain from the 4 Rhizotomy's in my rib's that I had two week's ago. It should be just a couple more week's before I find out if it worked at all. It is alway's a waiting game isn't it?
You hang in there and know that you are prayed for.
Pea
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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Supreme_AS_Kicker
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Supreme_AS_Kicker
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Pea, hugs on that rhizotomy pain. Understand completely. It's 3 weeks since bilateral rhiz on SI joint for me. Major ouch is down to dull ache. Next week she's doing lumbar spine. Stay strong on the marriage stuff. With work, you both can change and stay together. Hope you are both up to it. Big hugs for that.
Lon, hugs to you, too.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Beloved,
Had a great time in Philly, with daughter and family.
I do not have an update on my brain. He said there was no rush and no urgent emmergency. I am getting more forgetful. But keep on doing what I think is some important work!!
Like many of you I am in more pain than I could have imagined. But what choice do we have.
Lin wants me to try for disability....
Please let me know what is going on with you.
It hurts to get up and move, but it hurts worse to just sit there. Thanks for reading.
agape'
Lon
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Supreme_AS_Kicker
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Glad you had a great time with your daughter. How cool that you got to visit. Long trip, too. Bet you are tired....but that 'good' kind of tired when you get to see family.
DH is doing okay. His PSA continues to drop, but he's had some problems with depression and thinks it's time to make a change of meds. He's got an ankle problem, too. I need to make him an appt soon. I've got nerve pain in one leg and one arm, prob a nerve entrapment, but rheumy told me to stop the Enbrel for now. And it was working.... <sigh> I've got an appt for the leg/arm pain next week. MRIs in the future, most likely. It never ends, does it?
Good to hear from you. You SHOULD try for disability. It will protect you, since you are largely self-employed as a minister, right?
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Rumble,
why stop Enbrel.? is that the side affect?
I know more of us are depressed. I am not sure why, but I sure do not want to go back to the days without cymbalta.. Occasionally I get the painful dark pressure( thismorning) and I remember those years when it was so loneliy...
my head check is 12 / 21/ 11 but no emmergency.
agape'
Lon
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Supreme_AS_Kicker
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Rheumy wants me to stop Enbrel until the source of the nerve pain is found. I figure it's a nerve pinch, thus not the fault of Enbrel, but Enbrel is linked to a cause of MS, so it's prudent to stop while the cause is investigated. Nerve pain truly sucks. Hugs to you, Lon. Hope your checkup goes well. Stay in the light.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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rumble,
I must have been getting this crap in the mid 60's when i GOT SICK. Because they do not think all the brain spots are new. And when I took methotrexate, I got such a headache i WANTED TO DIE.
DR. KEPT TELLING ME TO STAY ON IT.
Thursday, I drove to the hospital, where my Dr. has a clinic, there two hours and then they called Lin, saying I could not drive home. more confusion, pain and massive head ache. I sure hope they can help you.
Keep me posted, I care.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Supreme_AS_Kicker
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Sorry you couldn't drive. Can you get to your church without driving? Is this confusion happening a whole lot? I wish they could help you quicker. It seems everything takes so long. Hugs to you, Lon. (Like that new line in your sig...'look to the end.' The prize, for sure.)
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Beloved,
I see this site is stil being viewed.. thanks.
My back and joint pain has kind of taken a back seat to the brain pain, memory loss, confusion and dizziness. I am getting a third opinion the 14th. We think that it is MS, aggrivated by the high blood pressure. They are still using the word extensive, when describing the changes to my brain. And even noting that I am missing a blood supply to one part of my brain. So all in all I know I have been blessed, since I got sick nearly 50 years ago.
It seems the covering over the nerve has disappeared in some / many places.
I have gotten to do many of the things I wanted to do and have many wonderful memories. I feel like I have fought a good fight, nearly finished my course and look forward to what lies ahead with only a bit of fear and trepidation.
I have been loved and I have deeply loved, so if we can learn to forgive each other I of all people have it made.
Please drop me a note, concerning your health and future.
You are important to me.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Gold_AS_Kicker
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Lon,
You and Paul have much in common. Excellence in adversity being one chief among them.
Frightening for you and Lyn, surely. I can't imagine. Much love, prayers and hugs coming your way. Meditate and rest as much as possible.
-Donette
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Donette,
Thanks for the note of encouragement.
I am thinking I will keep riding the 883 until the snow stays on the street. I enjoy the invigorating wind in my face.
So how are you?
I try to read what is happening, but some days I just don't have anything to say..
You should drive out and try some of my antelope sausage!!!!
I pray you and hubby are in true love!!
Do you listen to Matt Mahre?? He is my new favorite christian musician. He is catholic and just sings about God. He is on You Tube.
agape'
Lon
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Lon, good to hear you're getting another opinion & hope you get a brilliant dr.
 This bunny Kicks AS !
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Hi there snow.
My GP said that I must have been having a good day, when the specialist saw me.
Lin helped me fill out my paper work, for my new Dr. she remembers many things I forget...hence the point.
Are you out side these days?
Snow, did ya ever see stars? Mine are kind of coming back!!!
Big plans for Thanksgiving?
Uncle Lonnie
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Very_Addicted_to_AS_Kickin
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Lon, thinking of you, thus checking in on this post. you are one strong role model, embodying "change the things we can, accept those we can't......." as for the future, you remind us more than anyone how it is all in God's hands. my stepfather started having a-fib i don't know how many years ago. he had ablation; that didn't work. we figured he'd be in much worse shape now than he is. God must be looking over him. a lot of things he can't do anymore because of his heart, his arthritis, his crohns, but a lot of things that he can. and most importantly, he still has a great love of life. i know God is looking out for me. my neck / upper back continues to improve once again, over the last few months. chiro says that's typical of nerve impingement. and that it flares when my arthritis flares, and then recovers over the next few months, all makes so much sense. more than anything, i think God puts certain people in our lives, how it is with the doctors that finally give me some relief, and treat me with compassion and respect. and the good people here, like you, teaching me how to manage. you may love it here, but we love you here always glad to see your posts, and to gain from your wisdom
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Sue,
HI. It is always nice to see you.
I often read your posts, but am unable to respond. I am encouraged by the effort people put in to feeling better and the understanding / knowledge that comes with your posts. Similar pain and conditions seem to be remarkable, but that does makes sense when we look at the cause of our posting.
I am a bit miffed at what I am going through, there are days I feel less stiff, but this stinking head ache and confusion seems to be throwing me for a loop. Everyone here understands and cares, that is what makes it such a great place!
Your ability to keep working at your level of performance is such a example to me....
Thanks.
I will see the third doctor tomorrow......
agape'
Lon
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Lon,
how are you doing now?
Is there anything I can do to help?
You asked me that recently and it meant so much.
We could say a little prayer together.
I can just listen to you express yourself.
I care.
______________________
Jan
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Jan,
Thank you for the concern.
Recent blood testing indicates 8-9 levels that add up to MS, RA and of course AS. Nothing new, just getting a picture of what is.
I seem to be bumbling along, but much of the time I really do enjoy life and people like you that look for the best.
Ps 147:3 He heals the brokenhearted and binds up their
wounds.
Isa 1:18 "Come now, let us reason together," says the LORD.
"Though your sins are like scarlet,
they shall be as white as snow;
though they are red as crimson,
they shall be like wool.
Isa 9:6 For to us a child is born, to us a son is given,
and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.
I don't always understand; but I do know who hold my hand..... His name is Jesus.
Dear Father in Heaven, I pray for Jan, for her health and for the testing that comes to her each day as she struggles against this painful disease. We know that you love us Father, so give us strength and give us Joy to serve you. Amen
your friend,
Lon
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Thanks for reading...
some of you like me; may feel like you are at times in the dark place; because of pain and lack of understanding. I do not mean that I fear evil, but I do have a good understanding of how human I am and the reality of pain.
After my injections, my jaw is throbbing, my entire body feels like I was in yesterday's car wreck.
Ever get tired of hearing healthy people complain?
I believe that, as I think, I will become. So I give my self to positive thoughts, thoughts of stronger men and women than myself and of course my prayers.
I count my blessings and believe that this site, and all of it's members are a a gift that I did not deserve.
oh, I have small hard kernal under my arm near my right nipple. It is very sore.. any ideas?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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occipital injections - hurt like a son of a gun:
headache is a bit better I think
neck injection has had no effect in neck stiffness
trapezoid injections have had no affect on muscle tension.
Every doctor seems to work on one thing, one area of pain; and makes no regard to the..systemic problems.. the night of the second sleep study....I had the diarrhea..s so that was not at all manly.... lol until about 11: pm..
the hospital does not use water with C-pap, so I was totally dehydrated in the morning
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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1. occipital injections - hurt like a son of a gun:
headache is a bit better I think
2. neck injection has had no effect in neck stiffness
3. trapezoid injections have had no affect on muscle tension.
4. Every doctor seems to work on one thing, one area of pain; and makes no regard to the..systemic problems.. the night of the second sleep study....I had the diarrhea..s so that was not at all manly.... lol until about 11: pm..
the hospital does not use water with C-pap, so I was totally dehydrated in the morning
1. sorry for the pain, but glad they seemed to help a bit 2. sorry that didn't help, mine did quite a bit, not perfect, but i'll take it. i can't remember, was your neck facet joint cortisone injections or something else? 3. are you positive they injected into the belly of a triggerpoint? that's very important. if they miss, its useless. to tell, there should be very little if any pain from the needle piercing and going into the skin, but when they hit the triggerpoint, there should be exquisite pain, mimicking the triggerpoint pain itself. then they should inject the lidocaine. also, if the triggerpoint is a fair size, the muscle should "jump" when that "knot" is injected, thus releasing the muscle. that jump response is a good indication that the triggerpoint injection did something. even if all of this is true, if you have multiple triggerpoints in the trap, then it could require multiple injections. or if the muscles don't have triggerpoints, then not sure what the injections would do, if anything. can't remember, are you on, have you tried a muscle relaxant. flexeril has terrible side affects for me, i'm a zombie on it. but zanaflex has been very good to me, since 2001. taking it at night has been helpful. and then i take it when i need to other times. it does lower my BP and zonk me out, but only for about an hour, then my BP comes back up and i'm ok. flexeril zonks me out for days on end, the entire time its working. zanaflex lasts in the blood stream 6 hours, works pretty well for about 5 of those, but only zonks me out for an hour or so, about 45 minutes after taking the drug as it starts to take affect. others seem to like skelaxan as well. my rheumy has also put me on magnesium (~200-400 mg daily) and coQ (~100 mg daily) to help with the muscles. i do get less cramps when i started the magnesium. not sure how much these two help with the spasms, but i am doing better in between my flares. probably wouldn't hurt to try these as well, but ask a doctor first to make sure they won't hurt you in any way. the coQ is supposed to help the heart as well, why some people take it. anyway, just make sure if you're considering. 4. i hear you about each doctor looking at just one part. but not all doctors are like that. i am currently fortunate to have a rheumy, gastroenterologist, naturpath that looks at the whole picture, understands its all connected. my old endocrinologist was like that too, but he retired and the new doctor will only focus on my thyroid, and won't talk about anything else. i miss the old endocrinologist. but at least i have the rheumy and gastroenterologist. they've been instrumental at putting it all together. good luck with the sleep study. remind me again what they are trying to determine with that? hope it gives answers (and solutions).
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Very_Addicted_to_AS_Kickin
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Sue,
He mentioned something beside cortisone in the neck
I could feel some twitching when the trap. muscles were being injected. I also had a lot of blood loss. But although i feel different, I don't feel any better. Seems as though the pain just moved down a few inches but still here....
sue, I have some muscle relaxants, but in 4 hours I seem worse than before, the lidoderm patch is the best for some relief....
my blood work shows low and high in multiple areas but nothing extreme.
I am on benicar =for high bp
coreg "
ambien
gapatentien
cymbalta
tramadol for pain , they are like jellybeans
but I feel really tired the last few weeks
am seeing huge shadows / not double vision...
I will ask about suppliments...
thanks for going through this, with me
I appreciate you
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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We are adding another doctor.
My neurologist said that the sleep test shows leg and back pain is waking me up, 13 times per hour through the night. I am getting 9% of the REM sleep needed.
How is it with you, have you been tested? But the pressure went down to 14cc pressure instead of 17.. discuss sinus surgery since my right nostril is caved in...
he says no MS. it is high blood pressure caused brain disease.
but my symptoms are getting worse at times, not better. Pressure points show advanced fibro..
lose weight he said, lets see, I can't breath very well, use inhaler, back pain st crushing, how do I exercise?
thanks for reading. If you are here, you know of what I speak, hang in there. If I can help let me know.
more X-rays blood work
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Lon, well very important people like yourself require many doctors! I am humbled by your presence...but maybe I need to do a count of my drs?? It sounds like you are getting more answers at least, and maybe some minor fixes will follow that will at least enable you to sleep.
This bunny Kicks AS !
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Lon I have not been on here in a while. I read this post the other day. I lost my Abby dog on saturday, I have been looking for her every day after work. I took the day off today and took my mule and spent the day in the canyon country looking for Abby. At five oclock I finally found her across a canyon. I did not have time to find my way over to her. I built a fire on the canyon rim where she could see it and sat down and watched a gorgeous sun set over the Canyonlands South of the Las Sal mountains.
I thought about you and all the trials you have been going through. I hope and pray that relief is on your way. I thought about the blessings I have recieved over the last two years as the suns rays lit the slickrock canyons on fire around me as the the day passed to night. I sincerely hope your health improves you are due.
Abby walked into my fire as night fell all around. I rode for two hours across the heads of the canyon in darkness, I let Sassy have her head and she took me to my truck, where I loaded her and Abby and we came home.
ETTE.
Darrel.
PS. my son was accepted into a masters program at South Dakota State University. I will be coming your way and I will look you up. Take care of yourself, don't fall in the ditch.
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Darrel, I am so glad you found your dog!
______________________
Jan
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Sending a heartfelt hug across the miles, Lon, and prayers for healing and deep sleep. Keep us posted...
______________________
Jan
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Snow,
you always make me laugh to my self. and bring a smile
thanks for that, my friend.
any skiing? It has been so nice that I can still chip away at the ice on the streets, move snow with a shovel, I know I am a blessed man. I hope my youngest grand daughter turns out just like you.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Darrel,
I imagined the whole thing in my mind.
I was there with you. I have had an elk hunter walk into camp when it was dark and raining, he probably looked like your lost dog...
Yep, you paint a picture that I can step into... They have killed several "cats" here in Gillette this winter. what a shame. and a huge full curl ram, that came down and stay with domestic sheep. I talked to the game warden about hunters being able to harvest them, but there is always a good reason for safety sake.
My wife wants me to get a dog. So glad she is back with you.
Darrel, as you sat by the fire that night, counting your blessings, you were walking with God. What a tremendous experience.
I will make up the bed for you and your family whenever you come this way. Come late and leave early,if necessary that will be our agreement.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Jan,
What a nice thought.
And how are you? Any changes?
Your friend
Lon
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I can't get a breathing mask to stay on at night
my sinus infection has my jaw bone swollen
the meds that help me sleep,also slow me down, as along as I have to work, I need to be more energetic!!
a "friend" was so emotional about having surgery, then I was told it was carpel tunnel, cripes, both of mine released so much pain, I was hoping they could keep doing surgery....
Beloved,
hang in there. Post when you need to release some energy.
never give up and remember, you may have to educate your physician in regard to some things concerning this autoimmune disease.
the brain pain is coming back. but generally I can still get on the floor and play with Emily, put the blade on the 4-wheeler and fix things around the house.
there is some regeneration in counting our blessings, eh?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Beloved,
how goes the battle?
My jaw is better, the root canal project should releive much of the pain I had for years....
I cannot have my cataract surgery unless my BP goes down, it is 210 / 100.
I worked hard on cement in 95# heat yesterday. I insulated our air conditioning pipes at work...
I am so thankful, I can still do most of what I want to do.
but my hands were throbbing all night... do figure....
keep the faith, stay the course, watch what you eat, post when you are discouraged..... you can control many things about your health.
Lon
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Very_Addicted_to_AS_Kickin
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The dentist worked on 4 previous root canals... my jaw does feel better now that he removed that old decay..
My
eye surgery went well, but a nurse scratched my eye when she pulled off the surgery bandage. I have two scratch
es which may take another 5 weeks according to the Doctor. I see him tomorrow.
some of you have had similar problems?
I can not ride the Harley, due to lifting restrictions and the wind bothers my eye.
If you have a medical or physical complaint, just jump right in.
Lon
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Lon, the dr says no jumping! Jump in??
This bunny Kicks AS !
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snow,
I think it is time you piped down a bit!!!!
unless of course you want to guide me on slow elk hunt north of Rock springs, then you can tease me all you want, all day!!!
Any vacations this summer?
So how are you feeling?
I am a bit miffed, got the diahrea
got the severe stomach pains... can't see, gotr asthma, I think I want to die on the mountain.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Well I'm truly sorry you're having problems. "What is wrong with me?" is a trick rhetorical question isn't it? It seems to go on and & till it becomes hard to tell what's AS-related/what's not. How about "What ISN'T wrong with me??" Anyway, keep striving for the goal of a hunt. Maybe that pipsqueak cutie dog you got can be the guide? Yea, I can picture you toting a rifle and a dog catcher net.
Last edited by snowshoe; 08/22/12 02:01 AM. Reason: uhhhh, ummmm, ogosh....forgot why
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snow,
it is with sadness that I read your post. I was hoping for a warm and tender encouragment; instead I find a young friend who wants to talk sentence composition........ rhetorical, how can that be. I took all my medicine!!!
With friends like you, I feel better!!!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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THAT IS FUNNY!!!
i LAUGHED OUR LOUD!!
I feel like there is something wrong,,,but everyone else thinks that I am just incompetent.
Thanks, that did my heart good!
Lon
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50years ago, I had a fever, stiffness, extreme pain, which caused me to do very selfish things, searching for pleasure and fun.
Many years of back pain / stiffness / joint pain
memory and goofy feelings / seeing stars, etc
15 years ago added new flu like symptoms
back surgeries, shoulder surgeries / injectins / drugs
jaw / head ache that is / was unbeleivabley bad
this spring = pneumonia, viral bug antiobiotics for 6 weeks
jaw aches = root canals needed dug up and cleaned
My eye isw scratched at the hospital by a buble gum chewing yong girl...give ma a grand-ma for a nurse, poleezzeee
I came home from the hospital with C - Diff.
bloodin my urine and stool
I am in my second round of this stinking crap that makes every inch of my bowles burn, embarrassing diahrea
I see 4 objects in the injured eye
every inch of my body aches / I can't see / I am dizzy
But some day I will have a new body. some day I will have the opportunity to be complete and whole!
Thanks for reading, how can I help you. It does help to vent. Do you need someone to listen..
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Lon, now how can I compete with that list??? You deserve an award of some kind....extreme patient? extreme survivor? Hope the eye injury heals--if not let me know and I can help you out with a top notch eye dr if you want to make a trip this way. The infection, take the meds but search out home remedies as well. Go ahead & vent, it's therapeutic (one of those home remedies). I have nothing to vent about at this time but will take a rain/snow check on that!
This bunny Kicks AS !
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Addicted_to_AS_Kickin
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Oh Lon, no one should have to deal with all of the things you are dealing with. You are right that someday we will have a new body. I just can't even imagine. I just try really hard to always separate "me" from this "shell" that I live in and remember that even though it is decaying, "I" am ok.
I am sorry for the pain you are dealing with and the intestinal problems. My husband deals with that and has for quite a while. He really gets worn down with it.
We have been praying for you. I hope today is a better day for you.
Possi
![[Linked Image]](https://www.kickas.org/images/flowers/Smilingsun.gif) Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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snow,
now, how, or is it how now????
itis always nice to talk to you.
Just beautiful weather here. Every night the cold breeze comes in my window... but nearly 80 in the day time..
I think I am goin fishing Saturday.. a hike into the mountains, I will be following him, so as not to stumble..etc
I am kind of excited...
thanks
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Possi,
thanks for the praers and understanding.
I am feeling better.... my office is almost cleaned out.
I go in October 30th for the colonoscopy
She said there is a new drug that kills C-Diff....
Thanks for the reply
agpe'
Lon
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I am anxious to know about this new drug. I am glad you are getting checked out. Our daughter has a colonoscopy scheduled for Friday.
I will be thinking of you. Hope you are feeling better.
What about your eye? Any follow-ups?
Agape
Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Possi,
i thought of your daughter
it will be one month, unless the C-Diff flares again.
the antibiotic sounds like C-Diff phontically...
tell her to ask her Dr.??? I would also give her 35 lbs....
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Addicted_to_AS_Kickin
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I would give her 15 pounds and you could keep 20 for the winter. :o) I Googled it and sent her a text and asked if she knew about it. I haven't heard back yet. Good info.
New drugs are always a little scarey unless you get desperate. C Dif can do that to you. My rheumie wants to start me on Benlysta infusions which is the new Lupus drug. I have had so many serious reactions that I am pretty unsettled about it. They are getting it approved by insurance and I am still praying about it. I know I am not starting it until I make my FL trip. Lord willing, I will leave a week from today.
It is time for a FL kids and grandkids fix. We don't get to see them nearly enough. 1436 miles is too far away and should be against the law. :o) Hubby doesn't want to fly any more and neither of us can make that long road trip so I am going alone.
Just hope my eyes stay open.
Have a great evening.
Possi :o)
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Possi,
C-Diff is gone!!!!
I forgot to ask about the new drug. How is your daughter?
How are you feeling?
Lon
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Beloved,
someone must be reading part of this.. thanks
I have some precancer cells in my throat, due to gerd..
but He thinks it can be managed with a new med.
we are still waiting on the bowel...
I fasted 48 hours.... I was very sore and in a lot of pain. but I did have lots of energy and Lin got after me for being too active after the scope....
How is it with you?
I take more quiet time now. I like who I am, but I did not think I would be an out of work 63 year old former minister.
I am having a bit of trouble getting involved in the things I can do. a bit of depression I am sure.
It takes more courage to live with this pain than I would have ever thought. Hold your head high, my friends and face into the fierce wind of pain knowing that you are a winner!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Captain_AS_Kicker
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Captain_AS_Kicker
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Oh Lon, that sounds like Michelle. Her esophogeal cancer was from her G.E.R.D. I hope the medication works. It's not easy is it, having to leave your job, having this disease and all the other problems that we get just by being older. You are right, it all takes a lot of courage. I hope and pray Lon, that the depression will lift and life will take on a fuller meaning. I got put out of commission too if you will remember. One door closed means looking for the other to open. Sometimes, we are the door.
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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Pamela,
Nice of you to write to me.
but
I had a stinking fall in the back yard late morning...really rung my bell.... but I am just now quitting for the day...
Yes, I know I am blessed to have had the ability to keep going. Michelle, called, one day but I missed her call. What courage she has..
You too! Love and prayers to you today and always.
Your friend and brother
Lon
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Hi Lon,
She is doing well. I really enjoyed my visit with them. I volunteered in her classroom one day and loved getting to observe her teaching. We worked together in my younger days (before disability) and she has come a long way.
She is very careful of what she eats and how much. She does know about the med that you were talking about.
I am sorry about the problems from the GERD. I hope the new med takes care of it.
It is really not easy to adjust to retirement when you aren't ready for it. I have friends and family members who have gotten to plan retirement and are so excited when it happens. For me, I was in the office on Friday and by Monday I was in the hospital never to work again. I know all of the feelings you are having.
I hope your colonoscopy tests turn out ok.
Thinking of you.
Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Possi,
you are right the way we retire is not real fun
but that is our task
gerd is just not fun.... the meds don not seem to help, I am going to try and suck on hard candy and see if aI can get some salava going..
lots of pain these days, but once I get going I can walk in the morning...
with this stinking right eye I am a bit perplexed at what I can do..... focusing is a bit tough
how is it with all of you today?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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We are ok. It is what it is. Floyd has a lot of pain with his RA and having more trouble doing things all the time. I am better. I am thankful that my eyes are open. I couldn't open them for most of the summer. Lupus is a crazy disease.
Summer is still trying to hang on here in OK. It was in the 60's today but has been in the upper 70's and low 80's and breaking records for the past few weeks. I have a lot of flowers and my roses are still hanging in. We have a cold front coming in early Sunday morning. We will think we are freezing.
My back is giving me fits but I am putting off my Rhizotomy until after the first of the year because our FL grand daughter is coming for Christmas. The Rhizotomy makes me very very sore for a while and I can deal with what is going on now until after she goes home. She is getting to the age that she won't necessarily be wanting to see grandparents so often. :o( We want to enjoy every minute we can with each of them.
I am so concerned about your eye. It seems as though they should be able to do something to correct it. I don't have very good vision in my left eye; the last cataract. Also, they think the Lupus if affecting my eyes. Bummer.
Agape,
Joyce
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Belove,
I see a few are still reading....
can't stay NSD long enough to get the habit down
I have lost 30 lbs, from last year
the pain is pretty much everyday all day, but I can walk now!
cymbalta and gabapentine seem to keep me going.
I was angry for a week or so, realizing that I may be done working....
If I can help any one let me know. I enjoy being alive, I get tired and get discouraged.... But I have been really blessed and have got to do far more than I ever dreamed.
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I am glad to hear you say that Lon. Every morning when I open up the drapes and look out and say "Good Morning World" I am so thankful for another day. I can walk today too!! and I could walk yesterday!! so I am better again.
Agape,
Joyce
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Lon, congrats on that!
And you were only angry for a week? Is that all? You must have found some peace and are movin on. Hope the grandaughter is keeping you smiling.
-shoe
This bunny Kicks AS !
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Diamond_AS_Kicker
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Made my day to read this!
______________________
Jan
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Joyce,
I scraped and painted all day..I am very sore but it looks so nice
I hope that you are feeling well!!!
and enjoying each and every day of live!!!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Snow,
Emily moved her parents our last week,
so it is very quiet here. But they brought her by the other night,
and within minutes, she found my chocolate and had it smeared on her face!!!
I am so proud of her!!!!
And how are you?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Jan,
nice to see you again.
how old is your dog?
How are you feeling? Emily was excited when we visited in her new home. When I took
off my out6er shirt, she hid it in her roomand told me I had to stay!!!!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Beloved,
I see a few are still reading...so...
after resigning from the pulpit ministry, and not working 6 months, I applied for disability..... was told I had it then... I get paper working saying I do not have it.... tho I have been diagnosed with, lordysosis...rheumatoid, AS, DISH, M.S., Fibro. multiple bulging disks, bone spurs, some dementia, gout, congestive heart, loss of lung function, you know..don't you?
now they want a 3 hour mental evaluation...??? on Thursday.
now I am driving a van for residents of a half-way house, where convicted felons are trying to re-enter society. I am forgetful.... get mixed up...
At this point in my life, I thought I would have my house paid, retirement settled, maybe even ______________ (you insert)...but I am thankful for all that I have been given, I am thankful for what I learned to do and even the lessons I learned the Hard Way!
I love life and the plan that the Creator has for me. I am so thankful that I will not get what I deserve in eternity, but what God calls Life.
Thanks for reading it does help to know that you understand.
If I can help, tell me.
Being loved has allowed me to endure pain that I would have thought unbearable, without it.
How is it with you?
Last edited by Lon; 05/29/13 01:53 PM. Reason: add a word
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Addicted_to_AS_Kickin
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((Lon)) I am so thankful to hear from you. I have been getting concerned since you hadn't posted in a while. I am so sorry for the run around you have been getting about your disability.
I do understand what you are going through. I had to go on disability at 43 and I was responsible for more than half our income. 6 years later my husband got caught in the oil industry downsizing and thinking that it would be no big deal to get another job, we just hardly gave it a thought. Guess what, he ended up working in a half way house where the convicted felons were trying to re-enter society. It was not quite the paying job that he had before. We are thankful for all of the things you are thankful for. I am thankful to wake up every morning and thankful to open the blinds and see the beautiful world.
How it is with us is just how it is with you.
It really does help to know we are understood.
Being loved does get us through each day.
I am so glad you posted.
Agape.
Joyce
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Hi Lon, Makaylah, and I want to send you some hugs, kisses and much love. I read a lot and glad to see you are here telling how you are doing. With all the health issues you have going on I don't know why there is any question about disability. Many others in the states haves used a lawyer to help to obtain their disability - is that an option. Hope you get it soon.
Makaylah and I, hope the best for you.
Gerri & Makaylah
KickAS member since 04/22/06
Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - Celiac/fructose intolerance/malabsorption - many co-morbidities
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Gerri,
My dear friend, nice to see you.
Yea, I may have to lawyer up.....
I just did the 3 1/2 hr mental eval... it made my head hurt.
thanks. I do need and appreciate your steadfast concern.
agape'
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Lon, dear friend, I have been worried not hearing from you for so long. So glad you made your way here to update. Your strength is amazing and inspiring to us all.
Cindy
" That which does not kill me only makes me stronger"
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Addicted_to_AS_Kickin
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Hi Cindy, Glad to hear from you also.
I have been concerned about Lon too.
Hope you are doing ok.
You are another inspiring one.....along with Lon. :o)
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Very_Addicted_to_AS_Kickin
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Cindy,
I fear that I repeat myself and would tend to be boring.
I do miss posting.. but I often read and note what is happening with you all here!
Thanks Cindy!
agape'
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Well you did discover "what is wrong with me." Sorry the list is so long. Hang in there and don't give up. Saw a young moose on spindly legs and sat with cousin snowshoe hare who's hair has half changed from white to brown as the snow melts up high.
This bunny Kicks AS !
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snow-
I am seeing young antelope on spindly legs.
not a moose, but still fun!
I have seen a calf pulled out by a come along..plop on the floor and stand, then run / jump.
Thanks for making me think about the great out of doors.
Nice to hear from you! I did catch bass, crappie, catfish, walleye and pumpkin seed! Yep it was fun.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Lon my friend how are you. I have been way busy. Seems like the desire to live on the edge and go pro video it for everyone in the world to see is becoming epidemic. A lot of young people being injured and some dying. I spent a lot of time on the Mountain this year me my dogs and mules. I ended up catching five bear, two with cubs. I employed the CPR method this spring(catch,photograph,release). I had a lot of time to think, reflect and ponder just what is in store for me, where am I headed. I sat at 11,000 feet after letting a nice bear go one day and thought about what one of my deputies had said to me one day as I was getting ready to go out early the next morning. He asked me why do you go if you have to go alone.
What he does not know is I don't go alone. I used to live in the moment go hard and hit it the next day. I still go hard(not like I used to) I still spend a lot of time with my mules, my dogs and the desert and mountains. I tend to see things differently now. I think of people I consider my family I have never met. They are there, My Kickas family. You are definatly part of it. Ya I thought of you and your struggles as high clouds came by me with the potential of a lightning and storm. I wondered how you were doing if you made it out hunting, fishing? I hope so. I think you would have liked the view across the high desert south of the peak I was sitting on.
I believe you have a birthday tomorrow I hope it is a happy one for you. Sassy will pack you up the mountain anytime if you ever travel to southeast utah. Or we can take my ol boat and go fishing. Or we can just tour around in a car and look the country over and tell stories. Take care of yourself and may God bless you.
ETTE
Darrel
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Darrell, you are a blessing of a friend. I loved your post but kind of felt like I opened someone else's mail.
Your descriptions and words are wonderful. I love your pictures both those you post and those in my mind.
Hope you are having a great day.
Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Darrel,
I was right there with you in the mountains!!!
I still want to harvest a really big bear, shoot one more big bull elk, etc. But I am also content in what I have gotten to do! Lin has a childhood friend down in Arizona, so you never know...we might kindle a fire or just watch God's gift to us for a spell.
I did catch a lot of fish while visiting family.
I spoke at a men's retreat a while back. Saturday evening at the barbecue, guys were bringing huge trout to put on the grill, these guys are an example of what makes America great.
thanks for the BD wish.
How is your wife feeling?
Your brother,
Lon
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Possi,
How are you today?
Br'er Lon
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Hi Lon,
I continue to be amazed at how well I am doing. I still have nerve pain and incision pain but a lot of my long-time pain is gone. I am very thankful.
I get my staples out Friday and he will do X-rays to see if I am beginning to have bone healing. That is my biggest concern.
It took so long for my sternum to heal. Just doing a lot of praying about it so it will be ok. How are you and Lin doing?
We have our first "great" grandbaby on the way. His due date was yesterday. We are pretty pumped about this. They live here in our town too so we will get to be part of his life.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Captain_AS_Kicker
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Great news! It sounds like you are progressing very well. I was all worried when they were taking out my staples but I didn't even feel it. They just took tweezers and gently lifted them out. I hope yours goes as well. Now I am wearing these surgical strips to help take the scarring down a bit.
I am starting to look like Bride of Frankenstein!!!
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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@possi nice you are back, can you tell about your surgery
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Yes Coldbreeze (how wonderful your name sounds right now) :o)
I can tell. My redness in my lower leg is gone. My foot pain is gone. I still have pain but it is a different pain. This is one that you can tell will go away. I can stand up straight and when I walk I don't feel like my back is too weak to hold me up. I am sure the brace helps that feeling. I can walk further at 2 weeks out from surgery than I could for quite a while before.
I am so glad I decided to do it. It wasn't nearly as bad as what they had talked or as I had thought it would be. I am very thankful.
They decompressed all of the Lumbar area and the bone they took out they used to fuse L5-S1. I have plates and screws to hold it in place where the slippage was. The report said he did a laminectomy. When I talk to him tomorrow I will know more exactly what he did. I am sure he told me and I was too "under the influence" to remember.
Thank you and welcome to the forum.
:o)
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Friends,
I am now disabled....
I think it was the memory testing-
I still struggle with NSD - but I can get out of a flare by fasting and then apples only = lsd.
I drive part time for a half-way house for convicted felons. I often have to go in at a moments notice.. Usually I have to nap the next day for 2-3 hours.
I have been in pain for over 50 years. Unless you have AS, you may not know what a stinking backache it can be.
But I am a blessed man. So thankful for what I have been given the strength to do.
Do you wrestle with exhaustion -- would it not be nice to get a nap and feel refreshed?????
If I can help..holler. I do care and I love this place.
Lon
what is wrong with me? AS DISH MS CHF poly arthritis... but I can plant and pick my own garden, hold a baby and teach my granddaughter how to pick ripe tomatoes!@!
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Lon its good to hear from you! You have such a great attitude
and are a very good example to me.
Take Care and keep kickin!
-Donette
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Lon, it is so good to see you posting. The exhaustion is hard to deal with. I do things that I know I am going to pay for the next day and sometimes when I think it out I choose to not do them. Some things (like our grand daughter's birthday Monday) was worth celebrating knowing that yesterday was going to be a big rest day.
I understand the lifetime of pain. Mine has been since my teen years and that is 50+ years also.
I am so glad you could garden. I couldn't garden this year with the spine surgery. I am looking forward to gardening next year.
Holding a baby is such a cup filler. :o) Our great grand is now 2 months old and seeing him just makes my heart feel so full.
I am blessed also with my life. A big part of my blessing is you and the others here plus the gift of this website.
I love this place too!
Hope you get rested. :o)
Agape.
Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Lon, have they figured out what's wrong with you?? It sounds like you continue to plow forward no matter what. Speaking of plowing, have you noticed the few more minutes of daylight each week. Hope is on the horizon for spring (after a few blizzards I'm sure)!
This bunny Kicks AS !
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snow,
My dear friend. No mamm, I am getting more brain meds.... but I think my main problem is onery ness.. How R U? Have you been busy this winter? I am gonna try to use my bow this year and get in shape for elk season that way. come on out and we will hike into a roadless area.....
nice to see you again!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Donnette-
you R such a good mom and family organizer!
like to read what your family is up to.
How r U these days?
your Bro.
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Possi- how are you today?
We still have snow and cold here.
We baby sit our two grandkids several days a week, yep it is fun, but we are tired when they leave.
I do enjoy walking in the current at the indoor river.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Well a bunch of us are planning to caravan up your way this summer to see if you're a myth, legend, or sasquatch. Can we pitch tents on your lawn?
This bunny Kicks AS !
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snow- I am man. of short German descent.
yes, yes come and visit. but if you can stand me, stay in the house. No tent needed. Lin has not bitten anyone for years.
snow....isn't "a bunch" a growth on the foot that causes pain?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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It is easy to understand why God gives babies to young people. I love them being here but I am very tired when they leave. That even holds true for our daughter's Yorkie puppy. Too much energy in the house when it is usually so quiet and calm. Our dog is even exhausted when the house is quiet again. Our great grandbaby will be 7 months old Saturday. We never dreamed we could get so wrapped up in a baby. He is so precious. Just the sweetest little guy ever. We try to see him once a week at least. We try to not over visit. We are blessed that they live close and can drop by or we drop by. It is a little warmer today for one day and then the next 10 are to get colder with 3 different wet fronts bringing freezing rain, sleet and/or snow. We have had a much colder winter as it seems most of the country has. Hello to Lin. I am glad to hear she isn't biting any more. Agape, Joyce
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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I hope those of you who are reading, realize that the struggle is worth it! I am the classic case of those who either do not respond well to meds, or the diet does not seem to work fast enough or something is always causing me to not feel well.
But I am thankful that I can do what I can with some level of enthusiasm. With lots of yard work, walking my granddaughter and Lola, I am fairly active. But the level of pain nearly brings me to tears......
How is it with you?
We must make an effort to help our selves. Diet and exercise are so important. And then I spend several hours a week reflecting and meditating on god's Grace.
Love to all of you! I love this place, because of people like you.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Fifth_Degree_AS_Kicker
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I get so angry at times then when I start feeling better I get an ease all over my body(kind of exactly like a drug) and I lose my anger... It is the only thing I care about now for the rest of my life cause i know my ability to feel that way is slipping away fast.
It's the battle of our lives(and it will be nice when most not just some doctors will realize this) and I'll be ready for it to end when I die, if I can ever get there.
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Tnate-
For me- Peace came through Faith & with the idea that I will never "get there" but that is ok. Just like my covenant with God is based on doing willingly what I can and then letting go with the things that are beyond reach.
I do my best, which some days seem very limited, and then I let God do the rest.
I also think that there can be moments of surge, or of flooding within our souls that allows us to carry on. Anger can be our friend, but it must be tamed and directed.
There may be years ahead, where you are much better, health wise than you are now.
Death has a purpose, but let's not rush the event.
How can I help?
Your friend
Lon
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Wish there was. I appreciate the truly good people in this world, though(there's nothing I hate more than the spiteful, the fake, cheaters, liars, thieves, and those that prey on the weak). And I know you're one of the good one's, Lon. The thing that gets me is that I have done everything the right way for the last 4 years and have been nothing but penalized for it from EVERYONE but my new doctor. I can't even express the courage I think he has. It's really too bad the lapse of education and freedom of patients in the medical community. Sure there has to be oversight but this [*bleep*] is getting a little carried away its 2014. They've figured out most of everything by now and the wrong people are suffering! God almighty if i didn't have the things I did at my disposal you could put a fork in me because I'd be done and still may be even with everything I do. And I really hate to cynical but I gave up on god a long time ago.  I do believe in science though lol and I'm not sure how those 2 are related but would like to find out one day. Ah hell I'm sorry this thing has ruined me.
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Tnate-
My words seem inadequate when it comes to the feelings I have about the rights and wrongs in this life. But I do have an increasing belief that those of us with a sense of right and wrong, with a love for God and Country should expect to be bombarded with the tough problems of this life. It behooves us to take hold of the very tough things in life and lead those in darkness to the light. We should reach out a hand to those who take short cuts to wealth and fame.
Of course you believe in science. Many of the best scientists write publications in regard to "faith" that never make it into mainstream media. There are really good books and videos available from the public library concerning faith and science. You may have given up on god, but he is a long way from giving up on you!
I think, that you might just be getting started in becoming who you are intended to be.
your friend,
Lon
Last edited by Lon; 06/02/14 02:23 PM. Reason: spelling
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Fifth_Degree_AS_Kicker
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Only time will tell I guess. You would of loved my anthropology teacher who taught evolution and what he thought about religion (they teach you creationism with evolution because of what went down between the 2 then and since then) like the dover case.
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Tnate-
Both side have had its extreme behaviors with violence and consequences. But I do believe I would rather be wrong about a kind and loving creator not being there than about the belief that man is a living breathing spiritual being that answers to a just God.
If there is no god, who has given us life, I have lots nothing and gained a wonderful life. If there is a time of accountability of my stewardship, I ask for grace. If there is no god. then where does goodness come from? If there be no god. then maybe I can grab all the gusto I want, at everyone else's expense?
I choose the life of faith and grace, because it says we should care about each other, as much as we care about ourselves.
What doing these days?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Thank you Lon. I agree completely. This isn't what I would have chosen if I could have chosen but this is the plan for me and I am certainly ok with that. We see where God works in our life all the time. We are so thankful that we know Him.
Hope you are all doing ok. Our great grand is 11 months old and he is so precious that we babble right back at him. What a blessing that we get to enjoy a great grandbaby.
Have a good weekend.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Snow- ep we are getting our first winder storm. Blowing wind about 35, and 20*. I will take the 4-wheeler for a short run to the store.
I went hunt, several weeks ago. I had save a part prescription for prednisone. It worked very well. I was hunting, (close your eyes), in just my boots and jeans and orange hat. It was hot. I was climbing and walking at 11,000 foot but the elk were further back in the Tetons. But what a hoot, coyotes howling, bears at night, saw a huge moose. the night sky was fabulous!
I DID NOT FALL THIS YEAR!!!
But no back in Gillette, my vision is shadowed, my knees are really throbbing and I have a very tender goose egg on the inside of my right shin!
Most people with MS, Fibro, IBS and AS and congestive heart and heart valve disease can not do what I am able to do. So very thankful!
I am teaching an adult class on Salvational Covenant!
Much of my pain does not show up in X=rays. So I understand what man of you are going through. Thanks for reading. I did not dress up as anything, and it scared most people enough.
I love this place!
Lon
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We must be on the same western wavelength as I was planning to ask you for a humorous story today as I recuperate. So your funny post counts! It's amazing how the great outdoors can overwhelm our senses and take away the pain though we may pay for it later. And wildlife is a great picker upper especially if you become the prey (then pray)! "I believe it's best we carry on" and use the occasional medical miracle to get outside and live life! Those great memories provide sustenance. I'm completely relaxed during a long mri remembering in vivid detail floating down a river, a scuba dive, hike, skiing, etc. If not for the machine racket I could fall asleep in there. So carry on and please post more funny stories. Enjoy the too early arctic blast.
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snow- nice to see you!
I do take trips and float rivers in my mind. I can see the moose tu8rning in the evening light as it crashes away from us. The very large deer that let us watch for five minutes and then kept turning sideways as it sauntered over the ridge. Maybe the biggest buck I have ever seen!
and a bit one the scary side, hearing the newest member of the camp pull his pistol out of its leather holster as he thinks it is a bear coming 9 it was only lyle..... hearing the cock of a 44 mag on the other side of the tent is kind of exhilarating.
I am burning wood this winter. So I carry wood twice a day, stook the stove every three hours and the smell of fire is kind of fun again.
After you are recuperated, just ski on over here. Will you go back to work soon?
I always have to medicate so much before a MRI - pain pills or hate to say it alcohol. The idea of laying flat on a hard surface nearly makes me cry thinking about it. You are tougher than I am.
We had a bit of sun today. It is really pretty with all the ice and snow.
Your bud
Lon
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Beloved-
We drove 700 miles, and had a wonderful thanks giving. We played in the very cold Madison snow, walked on icy sidewalks and laughed, played games and listen to the kids sing. I wish all were as blessed as me.
I knew I would be having some starch, yea I know a weakness on my part. So I did eat and snack with the kids. Now I am very stiff and in pain with the swollen "wheat stomach". But already I have been active in getting wood and looking for things in the pu. THAT are supposed to be there. I had a bit of new snow on the drive and the deck to move.
I intend on getting back to walking the river current soon.
How is it with you? I still love this place.
Lon
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Is that very cold Madison snow colder than that very cold Wyoming snow? And are you planning to walk the river current during winter?! 
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cold is cold, it seems a bit more humidity in WI.
I should explain- the river current...is the warm current in the pool at the rec. center. It flows about 3 mph, which adds up after 20 minutes...
did you do well, are you feeling well?
I am back to driving and doing well, even remembering some addresses.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Very_Addicted_to_AS_Kickin
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I see a few are still reading.
A swollen and growing spleen is one of the added issues to my health. Yeah each day is a battle, as you well know. I can go a few weeks with no starch and reduce the swelling in my gut, but any little bit of starch seems to put me in worse shape than when I started NSD.
I would have never thought that a person could be in this much pain. I am choosing to work part time, taking pain meds.
How is it with you?
Years ago I took some of the big guns, but always had the brain thing doing so I dropped them.
these days I can barely squeeze the clutch in on my Harley. for those of you who are much more fused than I; I just don't know if I would feel better if the old bod would just give in and fuse.....
I refused the $430 pain patch prescription this week.
thanks for reading. Let me know if you need to talk.
Go Warriors!!!!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Platinum_AS_Kicker
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Well it's about time they found something is wrong with you--but is the spleen a new thing or old thing? I know a few who've had spleens removed and seem to have gotten along fine without it. Maybe it's cause for a few problems you may get solved. We care about your saga in this thread because AS has so many kindred diseases.
Life is a struggle, but we are still here to accomplish something and cheer each other on. Even with the pain and medical issues, I've known so many worse off (as have you I'm sure in your work). You are still doing good works with your part-time job w/ex-cons. Saw 2 moose yesterday--made me smile!
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Snow-the Moose= always make me smile! They just look goofy!
Thanks for the uplift. You are good at that!
Any recentproceedures?
I hope they take the spleen, cause it is really starting to be uncomfortable.
But I have been referrred to an oncologist as well.
Lin and I are enjoying the grandkids. redheads!!!!
love ya
Lon
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Well today the alpine wildflowers made me smile. I hope you go get to sit and wildflower watch. Have the drs decided what to do with you???
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Joined: Sep 2001
Posts: 8,397 |
Snow- my dear friend- they have decided to let me live, for the time being! They can not figure out the blood work, without an actual infection, or the swelling....
I have not gone to the mountains once this year. But I did drive through them and up and over the passes on our way to Seattle. I was able to paint the high spots on her house, but when I would climb down I stumbled a few times!
My forgetting is getting worse, at times.
What have you been doing?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Sep 2001
Posts: 1,661
Platinum_AS_Kicker
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Platinum_AS_Kicker
Joined: Sep 2001
Posts: 1,661 |
Hmmm...you continue to confound science so this thread will carry on. Now you're making me nervous painting high spots and stumbling down ladders!
This bunny Kicks AS !
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
snow- I was able to cut and split 7 wheelbarrows of wood today. It was a mostly dead hardwood tree from the neighbors. As you know, it was painful, my maul is 14#. But it should be very good wood by late Sep.
I have been thinking aob0ut the kind of leadership you would deploy for a few situations at work.
The two days in the woods were great!
agape'
Lon
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