Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Initial "gut feeling" when AS first struck

This brings up a lot of scary memories, but I also felt like I was "on the way out". Within two months of my first major flare, I lost my independence and thought my body was just going to completely shut down. I felt absolutely helpless. The night before my parents were going to shuttle me to their place, all my friends and colleagues came over to wish me well. They tried to keep it light, but I couldn't hide the severity of my condition and that kinda put a damper on the mood. My best friend confessed that he thought it would be the last time he'd see me because he couldn't believe how quickly I had deteriorated.

Despite the unfortunate development of spondy in my life, I must say that I've been very lucky! I was lucky that I was able to get so much out of life before the disease kicked my butt to the ground. I was lucky that I found a rheumy that had the presence of mind to diagnose me despite no radiologic evidence and lots of other confounding symptoms. I was lucky that I found an acupuncturist who served as a catalyst for my improvement. I was lucky that I found this forum and learned about different ways to manage the disease. I was lucky that I responded to the NSD. And most importantly, I am fortunate to be able to learn from the experiences of everyone on this forum. Everytime I visit KA, I am always touched of the unwavering support that is provided here.

I hope everyone has a great 2010!

Freddie

My PT is really pushing the NSD so I think I am psyched up to try it. She suggested I wait until after the holidays and all of the activities we had going on. She said she thought I would set myself up to fail if I started it with company, wedding, birthdays, Christmas, college graduation and hubby's surgery and I know she is right. It is on my agenda though.

Blessings.
Possi

I had numb feet and lower back pain, went to various Doc's. I was checked for cancer among other things. Finally went to a back Doc in Orem Ut. He sent off some blood work and ordered an MRI of my lower back. Next time I went to see him he showed the MRI to me. Arthritis on my L5. He also showed my blood work to me. he said I had the genetic marker for AS. I asked what that was, he looked me in the eye and said your spine will fuse from your pelvis to your neck. That kinda hit me hard.

He then said stop eating any processed food and exercise, your SI joints look good and you have no fusing. I went home and became seriously depressed. Exercise I could not even walk. Did not work for two weeks, overwhelming fear of something I could not control.I could not sleep. Doc here in town offered drugs for sleeping, narcotics for pain, anxiety, etc, etc. When I did go back to work I came very close to driving head on into a semi truck.

In 1995 I went to a head shrinker over a health issue, I was told I had genetic sister disease to asthma. Could not handle it.Withdrew from everything I loved doing for a year. On my last visit to Doc hyde, he looked at me and said you are the most independent person I have ever treated in my life. Go home and and tell the people who care about you what you have and that they may have to help you sometime. It was hard but it worked.

Don't eat processed food. That is how I found you people, I found my people, all of you! My life has changed, I am taking it head on. I have lost forty pounds, I can feel my toes again and the feeling of electricity has left my tailbone. I have hiked seven hours in deep snow, last year I could not even walk ten minutes.

My wife had her second heart surgery during all of this. While in Salt Lake I was able to have lunch with Orch and his wife, I don't know if he will ever know how much that meant to me, how much of a pick up it was for me.

I still hurt, I still fall down, I still worry. At 47 I feel better than I did at forty. When I get to feeling down this is where I go. Reading the posts hear always pick me up. I can always count on Kevin for something to get my mind off any percieved problem I have.Lon has a way of stirring deep feelings in a person.
Oh ya my Doctor who treated me for the Asthmas type disease called me the other day he has become a good friend and asked how I was doing and asked about my diet. He wanted to know what my diet was and what type of probiotic I used for one of his patients. He also joked that he did not want people finding out about my success in the sinus and breathing department as it would put him out of buisness. I asked for a refund since he failed to cure me in 16 years of treatment, he just laughed. Take care all of you, don't fall in the ditch!
ETTE.
Darrel.

Oh, I'm glad to hear I'm not the ONLY crackpot PT pushing the NSD!!!

I have a newish client who has psoriatic arthritis, and so far I have her doing a food diary, and she has identified tomatoes and wheat as setting off her SIJ pain and psoriasis skin lesions. I haven't told her (yet) how *I* know 'so much' about inflammatory arthritis and diet...

She is visiting family overseas soon, then she will start gluten-free and work up to grain-free when she gets back... Like *your* PT Possi, I keep feeding her little snippets of info (insight) to encourage her, and tell her "baby steps" to encourage her to start and stick with it...

Joyce - If you do go NSD, don't expect to feel amazing things overnight.... What I have learned, after having chronic pain for 30 years, is that I can now identify what is *mechanical* pain from all the damage (not goin' anywhere anytime soon... ) and what is inflammatory pain (reduced+++ by the NSD - over t-i-m-e...).

I think you will probably need to look for those "baby steps" - sleeping longer between waking, slightly longer time interval before you *have* to reach for those pain meds, how long you can kneel and weed before your back starts SCREAMING at you!!! etc....

I think, for me anyway - the best tool with which to judge the success (or otherwise) of the NSD has to be the Retrospectoscope! It's only upon reflection that I can see where I *was* before starting it (physically and psychologically) and where I am now...

The other interesting thing that I have noticed is how much LESS of a problem I am having with my asthma since going NSD.

To be honest, whilst eating NSD is no walk in the park, it DOES get easier over time... Eating out away from home is always going to be a minefield, but I think if your 'base level' of function is fair, then the anguish caused when you slip up doesn't make the next few days a nightmare - just a challenge that you can have faith will pass...

Good luck with your efforts - and remember that "2 steps forward, 1 step back" is STILL PROGRESS in the right direction!

Oh, PS: I hope everything goes well for your hubby's TKR re-do - keep us posted... and tell him - ice packs are his best friend!