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John (Dragonslayer)
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Timo (Timo)
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Joined: Sep 2001
Posts: 58
Active_Member
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Active_Member
Joined: Sep 2001
Posts: 58
I think maybe because of the facebook low starch group. I get posts everyday from them.

Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Major_AS_Kicker
Joined: Sep 2001
Posts: 2,192
Tim, I am just starting to run again. The MS gave me drop foot so I would trip over my feet when I was running. I had some orthopedic braces made that hold my feet up while running. The problem is the weather has been so bad here that I have not been able to do much running. How is Rosario? My neighbor is from Rosario, but has lived in Utah for 30 something years. Hope your family is doing well.

Steve


Steve Orchard, Running from AS & MS
Joined: Mar 2002
Posts: 9,522
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Joined: Mar 2002
Posts: 9,522
Wow... small word Orch, ask him if he is Newells or Central (2 big soccer teams in the city).

Glad to hear you can run again, I am walking almost every day and stretching. We are having hot and humid February... December was cooler than last several years, but now Feb is hammering us.

Best,

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Sep 2001
Posts: 1,661
Platinum_AS_Kicker
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Platinum_AS_Kicker
Joined: Sep 2001
Posts: 1,661
Still here, just not checking in (and not on Facebook either). Saying hi to all and special thanks to Dragonslayer and Admins for their dedication to keeping this site available as a resource to all.



This bunny Kicks AS !
Joined: Mar 2002
Posts: 136
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Mar 2002
Posts: 136
Hello fellow askickers.

I’ve been gone for quite a few years and glad to be back.

I’ve added Crohn’s to my diagnosis and am now on weekly Humira.

I look forward to catching up with all of you.

Joined: May 2009
Posts: 492
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: May 2009
Posts: 492
I rarely check the forums anymore. In 2009, the information on these forums really changed my life and the course of the disease. Since then I've pretty much been able to manage an asymptomatic life as long as I adhere to a certain lifestyle (I'm not cured). I'm sad that not as many people participate because I believe sharing our experiences can be very powerful and helpful. I know I'm very grateful for the people who have shared their experiences on this forum.


"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_
Joined: Sep 2001
Posts: 6,148
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,148
Thank You, snowshoe:

Will be here as long as possible! Thanks to our donors and especially Timo!

HEALTH

John

Joined: Sep 2001
Posts: 436
Black_Belt_AS_Kicker
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Black_Belt_AS_Kicker
Joined: Sep 2001
Posts: 436
Still check in here every so often....updated my location again...to CALIFORNIA! Good to see some of the old crowd is still here, and hope everyone is okay given what's going on these days.

Last edited by Paul_in_MD; 04/24/20 11:58 PM.
Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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Major_AS_Kicker
Joined: Oct 2006
Posts: 2,001
Greetings, fellow ASkickers!

After 10 years of looking for a diagnosis, I was finally diagnosed with AS about 5 years ago and have been on Humira and MTX since then. My symptoms were never classic AS, so it was a long, difficult journey to getting doctors to believe me and treat me. I've been doing great on the meds and am busy living my life now.

I did the NSD for 18 months and it didn't seem to help much, but I appreciate that others have had great success with it.

I'm teaching biology at a nursing college and enjoying my 5 grandchildren. Last year, I hiked the Grand Canyon and bicycled the Great Allegheny Passage. This summer, my husband and I had planned to go on a two-week bike trip along the Danube, but we'll have to postpone due to Covid restrictions on travel.

Life is good, though I have some residual neck and SI issues that I have to be careful with.

A couple of weeks ago, my 30 year old daughter was diagnosed with AS also and she started a biologic last week. I hate seeing this disease passed on to the next generation, but I'm glad she didn't have to through the medical odyssey of getting a diagnosis and treatment that nearly crushed my hope.

I'm grateful to all of the people at kickas who supported me on my journey and I miss all of you.

Best wishes to everyone!

Karen


I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.

Thomas Merton



Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.

Emily Dickinson


Joined: May 2020
Posts: 3
New_Member
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New_Member
Joined: May 2020
Posts: 3
Hello everyone ... i'm new here and this is my first post.
Well, 4 years ago i started feeling much pain in my upper back, everynight the same nightmare, i woke up at 4 or 5 am because of pain and no way to stop it since i'm still in bed, my breathing is painfull too. i felt like my sternal bone will open up from pain.
So i leave my sweet bed and start doing things. 30 minutes to an hour after i can sleep again (well just be in bed) because i can't sleep anymore. And so on, days after days, months after months.
In the begining i thought that it is linked with the fact that i bought a new car (how bed feeling), then that's a problem of the pilow, so i changed it ... nada. May be the matress, so i changed it too. There was nothing to do.
Then i was pretty sure that it's due to my life style : for years i worked a lot, eated less.
My right hip started to give me shooting pain time to time, especially when i was in the gym (when i open my leg), then i noticed that there is a difference between the left and the right hip. This one is much inflated than the left one.
Meanwhile, in june 2017, began preparing my wedding and put all my health condition on the side since i did not had a minute for me.
After my wedding, my pains worsened that i couldn't stay in bed with my husband for too long, or woke up pretty much early than him ... anyway, it's here where i did really started my journey with doctors.
Sadly, i'm on the fifth rehumy , and none of them could see what i'm passing through, because i do a normal day-life and it's seems that i belong to a non radiologic/ seronegative form of AS .
Today, my rehumy told me that i'm just being obsessed by the AS, and that i have to be grateful that i respond to the NSAI and when will be other symptoms or any signs of the illness she will be the first to give me the diagnosis.
For informations, i'm pills free since March, 17, 2020 . I was just afraid from having the coronavirus.

It's just helpless to not find someone to talk to, neither a rehumy who listens to you, it's soul depressing.
Kickas gave more informations then any doctor out there. i found about 2 months ago, i read a lot and learn from all of you. So i'm thankful for all of you, especially for the NSD thread. I'm on it, still learning , but the first results are satisfying, since that i feel much better this last week than ever. Those last 2 months were such a deep soul pain, physical pain. There was days that i could not even move from my chair because of chest pain, stiffness and fatigue.
Honestly, i don't really want to be diagnosed like an AS patient, but it will help me a lot to not feel the i'm crazy and that i don't create all this pain from my imagination.

I feel just too bad today.


The soul would have no rainbow if the eyes have no tears.
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