Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I really am still here

I know I haven't been around lately, mainly because I haven't been around!. I was out of town for 3 weeks and prior to leaving my AS was so out of control I could not stand it. I eventually caved in and started on the humira. The pain became so severe I was basically bedridden and it was the most trying time for my family. My doc got me on some good pain meds. Duragesic patches. They are fentanyl which is a morphine like drug, that you wear in the form of a patch and pain med is deposited in your tissues 24 hours a day. I also went on valium for muscle spasms, increased the neurontin, methotrexate, prednisone and other stuff I can't remember. The pain meds really helped. I did get sick a few weeks later(stomach flu)?? I don't know, there wasn't one going around, but I was extremely weak. I could barely make it up the stairs. I felt like that for almost 3 weeks. I was very discouraged as we were going on a camping and hiking trip to Oregon and Washington. I felt very betrayed by my body. Anyways to make a long story short the humira kicked in on my trip out West. I had the most fabulous time. I was able to hike with my family. We hiked 2000-3000 feet hikes up Mount Ranier, Hoh Rainforest, Hurricane Ridge, Victoria on Vancouver Island, and the Columbia River Gorge. We hiked to the top of many a beautiful waterfall. Life does not get any better. We hiked as high up Mount Ranier as we could without climbing equipment and were actually hiking in knee deep snow the higher we got. The only people passing us were mountaineers who were heading for the summit. It was paradise. We just sat up the top of this glorious mountain and took in every breath. My ever thinking and worrying son contemplated that if Mount Ranier were to erupt would we make it off alive. Not a chance I told him, but what a way to go. I then made the statement that if my life were to end at that moment that I would not regret one decision I have ever made. I know you all know how hard it was for me to decide to take the humira and of course I do worry about the long term effects, but my life in bed in excrutiating pain is NO life and if I can live my life to the fullest on the humira then I have to live with the consequences!!! It sort of sucks but what about AS doesn't. I feel better with every passing day and hope to be running by the fall. I have really missed running.I am now off the patches, prednisone and valium and easing down on the neurontin. I see my rheumy tomorrow, I know she will be very happy with my progress. Anyways I have missed you all. I am home for 10 days then off to my parents in Bracebridge. I come home for 3 days then am off to see my brother who has a cottage in Northern Ontario, then we go straight to another camping trip and to Stratford to see The King and I . I wanted to check in with you all and let you know that I hadn't fallen off the face of the earth!!!!


I love and miss you all


Simone

Simone, I love stories with happy endings. I understand the difficulty of your decision (probably most of us do), but without that you wouldn't have had the afternoon on the mountain top. It sounds absolutely idyllic and I'm so envious. It would have sucked had the mountain erupted, since you wouldn't be here anymore, but I do understand the sentiment you expressed.

By the way, you know what my favourite part was? "...off to my parents in Bracebridge." I can't wait to meet you there. Just 12 more days!

Hugs, and hope you're running in September,

Kat

Hi Simone

I have missed seeing you around.

Glad to hear you are now feeling better. Sounds as though you have been having a rough time. The holiday sounds wonderful, I am so glad you were able to participate and enjoy it.

How wonderful that the humira has been so effective so quickly - I am glad you made the decision to try it. I wish you continued good health.


Carol

Hi Jayne,

Sounds like you had a wonderful holiday and after such a rough time with the AS I am sure you really appreciated being able to participate. That is great news the Humira is working wonders for you. It is a big decision but if it enables you to have a life again it must be worth the risk. Just by looking at your family picture I can tell you have so much to live for. And now you have another great holiday planned and thanks to the Humira you will be able to enjoy it as well. I wish you continued success with your choice and just keep on kicking AS.

Deborah

Oh Simone, I am so happy for you You have had some many struggles but I admire your strength and courage to keep fighting. I wish you so much success on the Humira and hope that you have many more wonderful trips to come.

peace
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

I haven't been a member of KA long, Jayne, and haven't 'met' you before but it was great to read your story. It brought back a similar feeling for me when I walked out to Franz Josef Glacier in New Zealand after my knee replacement. I couldn't make it to the car somedays before that, let alone go walking, and to do the walk out along the riverbed as far as you can go without guides to take you up into the ice was the best feeling for me. Thanks for bringing that feeling back today after reading about your mountain top experience.

Elaine

Oops! Your sign-on is Jayne - so, Hi Simone!

Elaine

Hi Simone,

Glad to hear you are doing well... hopefully the only side effect you ever feel is happiness that AS is no where in sight.

Sounds like you are doing a lot of travelling.... enjoy!

Take care,

Tim

Pain is inevitable. Suffering is optional

Hi Simone! It's so nice to see you posting again!

"Hiking on a glorious mountain" ... ahhhh sounds like you found serenity! There are those wonderful suspended moments in time, when all seems right in the universe. I'm so happy to hear you are living life to the fullest!

I think Kat's fav part is my fav too!
Hugs,

mig

Oh Simone!!!!!!!!!!!
I can't tell you what an extreme pleasure it was for me to read this post. I am wildly happy for you (and for me too because you are blazing the trail for me my friend) I think living life to the fullest..and I am PACKING IT IN!!!!! in a big way is the way for us to go, and your sublime description of the mountains just proves it. Take that torch of courage and run Simone. I've been gone for ages as I've been fufilling my dream of moving into an artists' loft on a main street that is bursting with life. I've refinished and built the studio of my dreams, it's taken my MONTHS!! and I've been off line for a month and I couldn't have come back to a more wonderful post. I am doing really well still on the Rem. but I can't get below 5mgs of the pred. and i'm devastated as I'm desperate to get off that horrible drug. I started to flair like crazy on 4 mgs..it just doesn't seem to make sense. Anyway your post has given me so much hope!!! And i am going to Statford as well and am also seeing the King and I so I will thrill to know that your lovely energy has been there. All the best Simone!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Love Liz