Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group It's on!!!!...

Okay, the long and short of it is this...I went to the camp with Mike and almost as soon as we got there we had to go to the ER because I had a fever that was about 104 without fever-reducer and 101 with it, well, as we all know, that's not good when you're on immuno-suppressant drugs, I was hospitalized with pneumonia, the pulmonary doc on duty the next day scheduled a broncho-scope and then he decided after looking at everything that he wanted to do a tissue biopsy and that's when PF was Dxed...so this last week, we went back to the camp so that we could travel back and forth to Shreveport to see my doctors, as it's half the distance from home and I really NEEDED to get away...so as I'm sitting there being taught how to use all of my new breathing/oxygen treatment machines and how to take all of the now 21 different medications every day, in a way that they won't contradict one another and inadvertantly kill me and that's when it hit me....before I started taking all of these medications, I hurt like hell, yes, very true but I felt a hell of a lot better than I have in these past 5 years or so!!! One thought ran through my mine, "heal thyself!!!" I don't know who's thought it was but it landed in my mind...So, I went back to the camp and really THOUGHT about my ENTIRE medical situation and how it's just shredding my life and the meds are I'm sure taking their toll, as my liver enzymes have been off the chart for nearly two years now, I decided, NO MORE!!! ...I've made a plan...I decided to stop being angry at everything that ISN'T really the root source of my anger and turn that anger towards what's really eating at me inside....MY AS MONSTER!!! It's throwing everything it's got at me, trying to take me down.... and I'm throwing it right back!!!! I've done away HALF of my meds already, I've been living a more disciplined lifestyle while I've been at the camp....while I'm there, no phones, no television, no internet... just me, the dogs and Mother Nature for most of the day...I'm doing the NSD, practicing YOGA in the morning and then following up with some core strengthening exercises, military type for proper posture, no jerky or sudden movements, nice and steady, slow and easy, breathing properly, increasing very slowly and taking time to rest in between sets, nurturing my spirituality, meditating...every 2 hours, stretch and then walk Chelsea and Beaux on a fully extended, slightly tight lead, so that they are giving me a little resistance, it stretches my entire ribcage and spine gently and gives me relief at my points of entheses, of course it returns but I'm able to get little bits of relief from my pain and that helps me cope.... I'm going to continue my regiment until I beat this thing back into submission....I AM RESOLUTE, I WILL NOT SURRENDER!!!! I've decided to take another path, I want to get back to the business of enjoying my life on the waters of my beautiful Louisiana, it's what I do, a part of who I am and it's good for my soul... unfortunately though, the internet is not yet available out there on the Gulf of Mexico, nor on the bayous that carry me out to it... ...so, I'll miss you, my friends...it's been great and I wish the very best for all of you, I really do, thank you for all the support, encouragement, laughter and friendship over these last several years...big hugs & much love...always!!!

Way. To. Go. !!!!!!!!!!

Sounds like a wonderful plan Michelle. Except maybe throwing your meds away. Are you sure you won't need them in the future? I mean just in case?

I love the journey you are embarking on. Go for it. Enjoy. Thrive.

When my ripped up back heals a little, I'll do my own victory pose in your honor (referencing your avatar). In the meantime, I'm giving you two thumbs up - since my thumbs, big toes and left ear are all that dont hurt right now) and a big shout out: go for it!

Michelle, I applaude you though I will be missing you terribly, I do understand your endever. You will be in my prayers everyday. The six weeks we stayed in the motor home down south last year did just that for me, though temporary now that we have been back for 5 months.
All you have been through lately would have crumbled most, your strength is amazing my dear.
Cindy

I have had moments that I felt like this too. In my case I'm trying to focus on what works and reject what makes me feel terrible, but this all still pretty new to me. Good luck!!!!!

You are amazing, Michelle! GO Michelle GO! I know you can bring about a change in your health with this kind of determination..

The very best of luck with it (and stay in touch)

Hey.. The human mind is a powerful thing.

Prayers and best wishes coming your way from here.

Gotta love the attitude

Be well. It sounds like your heart is 100% in this plan and sometimes that's as important as anything. I never took the biologics, because a lot of damage had been done by the time they were available ,b ut mainly my heart was never in it.

I can't imagine much more healing a place than anywhere on the Gulf. Enjoy

Michelle, this is good news! Be sure to check in once in a while and let us know how you are doing. Sounds like you are on the right track.

Do I understand that you are staying at your camp?

Michelle

I hope you have found your path. I expect there may be a few stumbles along the way but do not let that deter you for your ultimate goal of feeling better and living life to it's fullest. You are a strong and determined person, I am sure you will find happiness.

Until we meet again!!!

Take care! But check in occasionally so we know how you are doing.