Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi, I am new here, kind of worried.

Hello Jake,... and Welcome to KA from a fellow Ontarian!

It sounds like you've found us all here at a perfect time. Your recent decision to turn your life around and get out of a painful rut ... is a choice that many of us can understand and appreciate ~ kickin' AS is exactly what this supportive site is best at! Hiding in denial can be a helpful coping mechanism short term, but please toss away the guilt, it can't be useful. Instead, try giving yourself some credit for finding this new spirit of determination to fight!!!

I hope Enbrel will be a force to help you gain back a better quality of life, and that KA can be the warm light!
Looking forward to getting to know you better!
Take care,

mig

Hello Jake...welcome to the site. You will find lots of support here from a lot of real nice people who understand what you are going through.
We are actually not too far apart, I live in Midland , Ontario.

Dan

>>>>>>
We are kicking some AS*.

Hi Jake,

Welcome to Kickas, best support group on the net for AS, a lot of good people here!!! Also a lot to learn here.

I am 35 single male in Arizona, quite a distance from you in Ontario. I may be starting up Enbrel or remicade come the new year depending on insurance and other issues. Currently know that feeling of feeling much older than you are... right hip pain is my biggest issue.

Have you checked out the diet forum? This provides me some relief from my AS pain.... used to be complete relief, but could not sustain weight. Hoping to get back to this diet.

Take care and keep coming back to KickAS.

Tim

Pain is inevitable. Suffering is optional

Jake,

Sounds like you've reawaken very quickly to the condition. I did the drinking thing too...

How do you inject ENBREL? under the skin or into muscle? I'll never forget my mum when she started on the insulin jabs, it was funny watching her chase her legs around with the needle never quiet getting the point in. It used to take her an hour or so. No she does 4 a day, everyday.....

PM me if you want a private chat!!! Please!

David

Hey guys, thanks for the Hello's.

I had my first Enbrel injection about 3 hours ago, it wasn't as bad as i thought it was going to be. I get trained to do myself on friday.
Jeez reading the boards here and your replys, I didn't realize how much diet mattered.
No starch? Yikes, I love my spaghetti.
Reading the post on these boards is really amazing, I can't believe all the simularities I am seeing.
Haha, the funny thing is I am making spaghetti for dinner tonight. No booze though, hopefully that is behind me, I also don't know how drinking and the Enbrel will react. I have it in my head that it will be bad for me and my liver, i havnt done research on the matter but I will tonight. The bottle of Sake above my computer may have to stay capped.
Thanks again for the awesome words.

Hi Jake,
Just wanted to take my turn saying WECLOME!
Like it was said so many times above me...this is the best place around for knowledge and support and I am so glad you found it/us!
I was around the same age as you when I was diagnosed. Did the same thing with the denial and yup, sometimes the booze too, but it always seemed like I hurt so much more afterwards so that had to go too. After the meds did a job on my liver, I pretty much deleted it. That's one thing you really have to be careful with especially since you've started the enbrel. Enbrel isn't as bad on the liver as some of the other drugs, but mixed with booze it can still have bad effects, so be careful ok.
The NSD is the way to go and if you find can't go with a complete NSD then maybe you can do like me and try sticking with at least a LSD. I tried giving up the starches completely, but for me it seemed like the NSD and the LSD was much the same. I just make sure I watch the amount and don't over do it unless I want to hurt more and who wants that. Do try the NSD first though and see if it works for you. Alot of people here have had really good success with it and you could be one of them.
Again Welcome...hope you stick around and allow yourself the benefits of this awesome place.
Hugs,
Lisa

HI Jake,

Welcome to KA. Glad you found the site. It is invaluable for information, support and laughter. You know if you try the NSD you can still have spaghetti, just in a different context. I had it tonight and used spaghetti squash instead of pasta. It was delicious. The NSD is certainly worth a try. Who knows you might be one of the lucky ones it works for. Good luck and keep posting. There is not too much you can't ask around here. Take care.

Deborah

There is no drug stronger than a good attitude.

Jake -

Lots of us have those feelings too! Welcome to a wonderful place where you can express them. I was going to tell you that once you got over your first injection, the rest are easy... but I see you found that out.

I have been on Enbrel for about 6 months and have been flare free. Watch out for infections. My Rhuemy has me stop the injections if I have an infection so you might want to check with your doctor about that. I tell you when I have had to stop I can really feel the difference.

This place is great!!! Since there are so many parts and pieces to AS, it is a great place to find comfort and ask questions.

Hang in there and hope to see you again.


Allison

Hey Jake. Welcome to KA!!

Owen Sound is a beautiful town. Lucky you (except in winter ). I'm just a few hours southeast of you in Toronto, but spend as much time as I can up in Bracebridge. Truly is god's country, Muskoka is.

How were you able to get Enbrel? I have to think you got in on a compassionate approval from Health Canada. I just found out about those, as this is the only way to get it for AS (other than on a study) until Health Canada approves it. Anyway, good for you getting it, and good for you actually learning to inject it!! I'm hoping that I'll be able to go on Enbrel one day.

Like you, I LOVE spaghetti. I'm not willing to go completely no starch with my diet (have a few concerns about nutrients that we get from some of those foods, ie veggies and fruit). However, I am on low starch and use rice as my main carb. You'll find that rice pasta is pretty good, doesn't take much difference in time to cook and works just like regular wheat based pastas. Try just cutting out things like potatoes and wheat based products (rice bread is a little wierd, but it makes great toast!). I've found that too much corn gets my thorasics buzzing too.

Boy, do I understand the desire to drown the pain. I don't act on it as I realized many years ago that too much alcohol hurts me physically, but man I have days when I wish I could just let myself go and drown it. Today's one of those days. All things in moderation, my friend. Especially when you're on meds. OK?

But mainly, you have to find what works for you. This is a highly individual disease, we all feel it differently and we all treat it differently based on our own cases. You'll find something that helps. Hell, you found THIS PLACE, didn't you.

Hugs,

Kat

Hi Kat

I just spoke to my 2 sisterinlaws that work at Health Canada and Enbrel is approved by Health Canada. It has been approved for AS at any stage of the disease. Just thought I would let you know. Found out today.

John