How are you guys doing? Well my last post shows me Skydiving and Climbing Mountains – and strangely this last 2 weekends I have been doing the same!

My Humira was stopped, so it has been 6 weeks without injecting. It was stopped as I missed an appointment to see a Specialist to confirm I was reacting well to the treatment. A letter was sent to my house but I was away working in Mexico at the time. So, as a result they (the NHS) said “Nope, you cannot have any more Humira until we see you”.

So after an hours drive North to the beautiful City of York I saw a Nurse and was given the Thumbs Up! Perfect! I injected last Thursday and it has not had any affect on me yet. It took about 4-6 weeks to kick in when I first started the treatment. So I am playing the waiting game.

Anyway, I should have taken it easy but being ‘Kenny’ I did the opposite.. check the pictures!! I mentioned the Crib Goch Ridge that leads up to a Mountain called Snowdon in the UK…. well here are some pictures. I climbed it again this weekend to get some pictures during the day so that I could share with my fellow AJAS supporters!

This picture is from Google to give you guys an idea of what we climbed.

Right now, we are fielding two teams: the D4 Blind Aggression and D3 Team Fuse, captained by Brian Warner, the man himself. After the first day of play, both teams are 1 and 1. Play continues tomorrow.

In the trade show area, I am staffing the booth with help from two of my sons: Christopher and John. Christopher is also an official field photographer, so he works in the booth when he’s not shooting pictures of the teams. This tournament we have added something new: a raffle, thanks to donations from Virtue, Guerilla, Planet Eclipse, HK, Rain Sleeve, and Blue Manatee Bookstore in Cincinnati.

I want also to add a big shout out to our ongoing sponsor, Perfetti Van Melle, who donated 1,000 Airheads for the booth, as well as a new sponsor: Cars Helping America. Donate your car or truck to them and they will donate half the proceeds to us.

If you’re in the area this weekend, stop by the booth and say hi!

I finally have Humira Injections!!! What a life changing experience! For those who dont know what Humira is or what it does please check the link below!

http://www.humira.com/global/injecting-humira-pen.aspx

I no longer have to take my tablet form medication. This consisted of Tramadol, a painkiller and Arcoxia (NSAID). All I take now is a sleek looking pen style injection every 2 weeks.

It took about 2 months for Humira to kick in, initially I was worried it was not working. Eventually, my body became pain free. Going to bed without painkillers was both strange and a wonderful thing.

Below – a picture of the Snowdon climb for Gerry - I have climbed this mountain about 5 times now. Twice for Arthritis UK and across the more dangerous Crib Goch ridge too!

Jumping out of a perfectly good plane seems strange....

I did both the climb and the jump before I got hold of Humira, so it is possible to live life to the max with this condition we have.

Keep smiling people – I will post up later next week!

Stay Strong

Ken

So the reason I’m writing today is a little self serving . . . I hurt. I’m in between injections and don’t know if it’s the weather (Cincinnati weather like to fluctuate +-20 degrees every day) but I’m not a happy camper.

I’ve been using the normal remedies like super hot showers, stretching and an obscene amount of advil, but I’m still achy. Oh well, such is life with AS. Even the super drugs like Humera don’t work 100% of the time.

Enough whining, and on to new things:
2011 should be a sweet year for AJAS.

1.) We’ve put the Fuse project into another league since it saw great success in October at World Cup. This means we won’t be on the beach for the first event, but rather in Texas for spring break! The booth patrol should have a great time meeting new people there

2.) We’ve welcomed a new member to the AJAS board: Christa Tutwiler. Christa comes to us from the University of Cincinnati Foundation and has mad skills. We’re thrilled to have her on the AJAS team!

3.) Wendy has been working hard on the idea of an AS conference in Cincinnati for next year. The idea is to get researchers, pharm companies, AS sufferers and other concerned parties in the same space at the same time to talk about our crazy disease. Sound like something interesting to you? Let us know in the comments section below!

Well, that’s all for today. Hope you all had a happy holiday and are already experiencing a great new year!

Brian Warner

The Spondylitis Association of America to Present a Patient Educational Seminar in Portland, Oregon, on September 25, 2010

On September 25, the Spondylitis Association of America (SAA) will be at the Hotel Monaco Portland to present a free, one-day seminar on ankylosing spondylitis, a chronic, rheumatic disease that generally strikes young people between the ages of 17 and 35.

For information about attending this free seminar, contact Elin Aslanyan at 818-892-1616, ext. 222 or at elin.aslanyan.spondylitis.org. For more information about their activities, visit their Web site at www.spondylitis.org.

Spondylitis Association of America Launches Free Accredited Training Program for First Responders Handling Ankylosing Spondylitis Patients in an Emergency Setting

August 24, 2010, PRWeb news release

For people affected by ankylosing spondylitis and its related diseases, the most frightening part of an emergency situation can occur after help arrives.

Thanks to the Spondylitis Association of America’s commitment to educating emergency first responders, for the first time, over 800,000 EMTs nationwide will learn about the disease and the proper handling of AS patients in an emergency situation. Van Nuys, CA (PRWEB) August 24, 2010

Spondylitis Association Of America announced the launch of a free accredited training program for first responders handling Ankylosing Spondylitis patients in an emergency setting.

“Emergency Medical Providers called to care for an individual with AS must remember that their patient’s spine is inflexible and cannot be moved” states Dr. Gary Vilke, Professor of Clinical Medicine, Vice Chief of Staff, and the Director of Clinical Research for Emergency Medicine at the University of California at San Diego Medical Center. “Numerous emergency medical techniques must be modified to accommodate patients with AS. These include airway management techniques, splinting techniques and transport considerations.”

Working with an Expert Faculty of Advisors and in collaboration with the National Association of Emergency Medical Technicians (NAEMT), the Spondylitis Association of America (SAA) has produced the first-ever training video to instruct paramedics, emergency medical technicians and fire department personnel in the special needs of spondylitis patients in emergency situations.

(read more)

A new AJAS supporter, thanks to Perfetti Van Melle's Air Heads

Awareness Booth hits the road!

August 2010 saw us in Aldie VA at Pev’s for the DC Challenge. Wendy and Chris staffed the AJAS Awareness Booth while two paintball teams took the field. We’d like to send a BIG shout out to our new sponsor, Perfetti Van Melle, who donated 1,000 Air Heads for the booth! What a great way to entice people to stop in and hear about AS.

We met a 17-year-old player who has another kind of arthritis and is having to give up lacrosse but plans to continue to play paintball (ROCK ON!). We met a woman whose family members have AS and treat it holistically through diet and lifestyle choices. And we met tons of little kids who walked away with mouths full of Air Heads.

Our teams did us proud: Team FUSE made it to the quarterfinals for the second tournament in a row (RAWRRRR). We fielded a pump team for the first time and are pleased to announce that Blind Aggression made it to the finals, coming in FOURTH. Booya!

I am definitely going through a ‘bad patch’. Explaining AS to others is difficult, but explaining that it attacks sporadically is another. Only my closest friends and family bother to listen long enough to understand. Then again my Mum still struggles with it, she says “He has a bad back”. So I am piled in with the millions of others that suffer from back pain.

If you offered me back pain instead of AS I’d snap your hand off… *shakes hands* deal done! At least then I know what to expect and that certain movements trigger it, that it won’t necessarily get worse over time and that it won’t affect my posture as dramatically as AS can. I wouldn’t have to take the different pills morning and night, I wouldn’t wake up and have to go through the ’Darwin’ type procedure of crawling, crouching and finally walking, before I can stand up and walk to the kitchen.

I am probably glazing over back pain as if its like getting a cough or a cold, it isn’t. But at the same time it is not as acute as AS, it is not as intelligent or as intrinsic or invasive.

So, after that string of text and wanderings.. back to my subject heading. I have planned to climb a few relatively large hills or as they are more commonly known, mountains, on this side of the pond.

I aim to climb Snowdon (Wales), Ben Nevis (Scotland) and Scarfel Pike (England). These are known as the 3 peaks and with that is the epic *Der der derrrrrrrrr* “Three Peaks Challenge!”.

All 3 peaks climbed within 24 hours. I am doing some training this weekend with a friend to get myself in a decent condition so that I am able to climb them all…..within 24 hours!.

I was due to do a test climb of Snowdon last week but my nasty bout of AS kicked in and I had to rest up. Again unpredictable and invasive.

I will post some pictures up and start taking care of ‘Kenny’s Corner’ a little better!

Thanks All

Ken

It’s been an age since posting, apologies… So what’s changed.. I am now a married man, that’s pretty cool… just got back from a lovely honeymoon.. was brilliant.. heat does our breed the world of good!

So before Christmas I had Iritis, you will be glad to know since I have had no problems with my eyes (Touch wood).

So at the moment my exercise consists of running (around a mile  - 3 miles) anymore and I pay in pain the next day. I am going to shift to swimming so that 80% of my exercise is in the pool. The lack of pounding on the knees, hips and ankles should help and I got great results just after a week of hitting the pool while away on holiday!

I have been thinking.. wouldn’t it be nice to see someone, with a good body yet this person has AS. I mean, we all have good bodies but what about someone who looked like they worked out seriously and they looked like they had no problems what so ever. I am half considering this as a project, I know I would love to see a picture of someone looking really cut and toned with AS… it would certainly drive me. But then again we all have different strains of AS then surely some will be able to gain a better condition than others? Some people won’t want to look good they just want to feel good? For me it’s important to look good, I always used to before I got this dodgy condition and I still hold it off well. But what if I got strict on my diet and worked out as much as possible… would I be able to shake it from holding me back? or would it aggravate my condition and make me experience the painful spells more?

Interesting thoughts.

Its been a while, apologies for that. I was really busy with work. The credit crunch has hit the company and cuts were made. I was lucky enough to stay and now I have been off for a  week. I woke up 2 weeks ago now with an itchy, aggravatedright eye. It soon became really red and cloudy and so I went off to the doctors. I suspected it was related to the AS but hoped it was an infection. You know things are bad when your hoping for an infection.

I went to my doctors who soon passed me on to the eye clinic to see a specialist, they checked my eye, checked the pressure and confirmed it was Iritis (might be incorrectly written there) and they have issued me with 1 set of eye drops that sting like hell, to be taken morning and night to open my pupil right up to prevent the lense from sticking to my eyeball. Apparently this can happen!

The other drops are steroidal and I take hourly. At the moment my vision is totally impaired and I have no depth perception and vision in my right eye is really cloudy. The office I work in is over 100 miles away so I cant get to work, nor can I work from home.

Here is a pic of my eyes at the moment. Check my pupils.

http://i97.photobucket.com/albums/l225/fire_in_the_hole/Myeyes.jpg

I have the new Call of duty Modern Warfare 2  and I cannot see a bloody thing to play it.

I love AS.

Ken

Anyway my documents are through, my Dr could see I was in agony and he quickly issued me with 90mg Arcoxia and 120mg Arcoxia for when I get very stiff and painful. I now have a box of 100 tramadol for pain relief. I started exercise for the first time today. I have done a bit on the punch bag and light weights with some pressups. I feel weak in my core so have alot to catch up on.

Hey Wendy! Thanks for your message on an early post of mine. It would be great to see you in 2011 and Brian at the conference. I will definitely have to get over there!!

Peace guys

Kenx