Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi All!

Well my name is Chris.

I found this web site atleast 2 years ago and said "why join there". Well now I am here and finally joined. I have been reading past hour or so and see a lot of useful information and things that touch my life past, present & future.

Diet: In 15 years of AS (now 30 years old) my doctors have mentioned a certain diet 1 time. So I eat too many starches and a lot of red meat.

Excerise: Hurts more to excerise than not to. That is where my golf comes into play.

SS Benefits: I was Denied 12 years and haven't tried again since.

Enbrel: Seems to be drug of most, but yet I get Remicade. Speaking of Remicade, the infusions now take over 3 hours because I must be "slowed dripped" or my body and mind freak out anything above 150 ml/per. hr

Jokes: People with AS have to have a good sence of humor or they would all shoot themselves. I am a proud jokester. But to be a jokester you must be able to take a joke. Number 1 most said joke I have heard over the past 15 years "You walk like you have a corn cob up your a@%".

I have always said god gave me AS or I would be perfect.

People really don't understand what AS is so when someone ask why I have a bent back it is just easier to say arthritis. They say "At your age". I wish to say one time "nah I am making it up"

People love to stare: I like when I cute girl or woman stares. I tell myself they are "checking me out" when most likely in reality they are saying "what is wrong with that guy".


The good ole' days: Are exactly that. Days of little league baseball (highest batting order 3 years in a row), pop warner football (Starting a new school in 8th grade on Monday, practice that afternoon and become starting talback for remaining of season), fishing (walk the creeks of tennessee for miles), camping( hiking miles into the woods and making a campground).

I am still trying to prove that AS causes poor grammar selection and awful speeling.


Time to go to bed. Been up too long. Thanks and I look forward to getting to know more of you.

Chris

Chris,

Hi! Welcome to KickAS!

David

Hi Chris Welcome to our KickAS family.
Bradford

To the world you may be one person,but,to one person you may be the world.

Welcome Chris: my AS started with hip joint pain at 19 when I was learning my trade as a tool maker .At 22 I went to enginnering school to learn more about manufacturing engineering.At 35 I went to work for a start up that developed the first successful immplantable cardiac debifrillator/pacemake like VP Dick Cheney has.My heart screwed up and I needed surgery for wolfe parkinson white syndrome. I subsequently hit overdrive in AS.My neck ,low back and wrists fused within months.I had to leave the develpment part of my company because I no longer could stand up for any length of time in the machine shop and labs where I did development work.I shifted to more walk around and working on equipment as well as some computer work which gave me the routine I needed to handle my AS stiffness and pain.I later on could no longer do this and when the company moved ,I got a job with a hard drive manufacturing and development outfit.I did a lot of computer work and walked around a lot and handled the desigh engineers calibration of equipment needs.After 3 years doing that and two neck surgeries ,I got to where I needed constant narcotic pain control in spite of Enbrel.My kidneys would not process NSAIDS like Motrin,Celebrex and many others after 15 years.Before I got the last job that went on for 3 years,I consulted the Calif .state dept. of Rehab.They counseled me and assisted with Resume advice as I was having trouble finding anyone who would take a chance on somone who was bent over and had chronic pain.After the neck surgeries and hitting my 50th b-day I was done working and applied for SSDI.With documentation and writing to them what I have just written here I got approval.
Try your state dept .of rehab and see if you can work for a few years at somthing that you can do and you might have better luck down the road getting SSDI.
I can't golf or fish or Fly anymore.Now I am a house husband raising our 10 year old boy.
Kev

Welcome Cris, This site is filled with some of the best folks this world has to offer. And the best part is the medical advice is free and the therapy sessions also are at no cost.

Take care

Martin

"Trying to fly on broken wings"

Thanks for the replies all. My AS kicked in at 14 with hip pain as well. I broke my foot and shoulder playing football. About 2 months later I had a bad case of poison ivy. The doctors said this may have triggered the onset of AS. I swelled up badly and then I went to the childrens hosp. in lexington, kentucky until I was of age. When I was 16 I started working fast food and worked that until 20. What was bad was insurance was never an option so I killed my stomach with otc ibupropen. At 20 I started in electronics manufacturing industry (very light work) and picked up insurance. Got back on NSAIDS for years to ease the pain until my creatin levels went through the roof. At 28 I started Remicade and it has stop the need for NSAIDS, now at 30.

The part that confuses me is

My blood pressure use to be normal 128/80, now after remicade I float around 140/90. Anyone else?

My Doctor ask "how long are you stiff in the morning"? Except for flare ups I am the same stiffness all the time. The longer the day the more I hurt. Mornings usually provide more relief than late at night.

I have had no surgeries but I snap-crackle-pop like a box of rice krispies. My back is "hunched" atleast 60+ degrees from my hips. Almost looks like a right angle on video tape.


I do not swell up. But my right shoulder flares up more than anything else.

I have had Euvitis in the left eye twice and was blind in it each time for over a month.I think the euvitis has been the worse experience of all.

Chris,

Welcome to this site, it took me a long time too to actually "sign in". There is lots of good stuff going on here, advice, information, someone to listen when you have to vent, I have found it to be very empowering, mostly because everyone here knows what everyone else is going through.

I usually tell people I have arthritis too, and then they say that infamous "...at your age...". well yeah. I have had symptoms since 24 and got diagnosed last August. Some days I feel like I am 82 as opposed to the 28 that I actually am.

Anyway, welcome!

Amy:)

Hey Chris

To the site. I hope you find as many friends here as I have.

John

Hi Chris,

Thanks for taking the time to post! Kickas is the greatest of websites. Much to learn about AS here... diets, medications, exercise and much more. Also a lot of support that is free.

Hope the site helps you half as much as it has helped me.

Tim

Hope is only a post away with KickAS.

to KICKAS.

Glad to see that you decided to join.

The rest of my post is my normal welcome information, it does seem that you have answered most of this already, hopefully there is something here that you have missed.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne