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#455758 - 11/07/11 08:54 PM Re: What is wrong with me? [Re: rumble]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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.

#455760 - 11/07/11 09:39 PM Re: What is wrong with me? [Re: Lon]
Donette Offline

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA

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.


#455797 - 11/08/11 10:02 AM Re: What is wrong with me? [Re: Donette]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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.


#455838 - 11/08/11 07:07 PM Re: What is wrong with me? [Re: Lon]
snowshoe Offline

Registered: 09/10/01
Posts: 1658
Loc: Lost
Lon, good to hear you're getting another opinion & hope you get a brilliant dr.

This bunny Kicks AS !

#455865 - 11/09/11 07:17 AM Re: What is wrong with me? [Re: snowshoe]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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

#456154 - 11/14/11 04:58 AM Re: What is wrong with me? [Re: Lon]
Sue22 Offline

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY

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 heart always glad to see your posts, and to gain from your wisdom hugss


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.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#456171 - 11/14/11 11:27 AM Re: What is wrong with me? [Re: Sue22]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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....
I will see the third doctor tomorrow......


#457623 - 12/05/11 07:26 PM Re: What is wrong with me? [Re: Lon]
naj Offline

Registered: 10/04/07
Posts: 1725
Loc: U.S.A.
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.

#457671 - 12/06/11 12:09 PM Re: What is wrong with me? [Re: naj]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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

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,

#459494 - 01/04/12 09:08 PM Re: What is wrong with me? [Re: Lon]
Lon Offline

Registered: 09/11/01
Posts: 8385
Loc: Gillette, Wyoming
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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