Ankylosing spondylitis

Life can be so unfair…

unfair“I know the world isn’t fair, but why isn’t it ever unfair in my favor?” Bill Waterson

Since March I haven’t really been myself; first the death of my father then my body going to crap. There was the Walk Your AS Off campaign moving onto World AS Day to World Autoimmune Arthritis Day. Work hasn’t made things better with more things to do and more patients than I know what to do with. Are the planets aligning in some strange way?

The Walk Your AS Off went fantastic. I had a great team and we managed to accumulate 7,668,654 steps; I on the other hand only managed 914,964 steps but hey I am amazed I did that. Next year I think I can make a million!

peggyKimMickeybunch

Collectively the AS awareness project made their goal and I am so proud that I was able to be a part of this.

WEDIDITfinal2013

World AS Day began on May 4th, and even though I wanted to do something for this day, I couldn’t even get out of bed! The previous pain I suffered was not the issue, now it was the stiffness from Hell! I was beginning to think that rigor mortis was setting in it was so bad. I started back on my anti-inflammatory and that began to give me some relief. Of course during this time made going to work nearly impossible and I began contemplating taking a leave of absence. But if I do that who will see my patients?

illicit loveAround this time fellow ASer Jane Lark‘s book came out “Illicit Love” This Romeo and Juliette type romance took me back to the 19th century and gave me some respite from the day to day turmoil my body was putting me through. If you get a chance check it out…. Thank you Jane for writing such and “intriguing” novel, I loved it!

Illicit Love  – This novel is the story of a 19th Century Courtesan who falls in love after a single liaison. It is inspired by real life stories from history, although the characters are fictional.

On the 8th of May I went to see the doc. We went over x-rays and blood work and decided that my AS is progressing to fast and that it was time… time to start the biologics. I tried to avoid this decision at all cost, but what is happening to my body has left me no choice. Within one year my spine has shown drastic changes, ergo the pain I feel, and if I don’t do something soon I will be looking at disability within two years. I decided on the Humira, don’t ask me why, since I really don’t know. Right now I am beyond looking at side effects and just want some relief from the pain and agony I am going through.

I never thought that I had a depressive side to me until this last few months as I can’t seem to get out of the feeling of despair. I cry more than I laugh; I seek solitude to company of others, including family. I really didn’t have a clue what was going on with me mentally until Jane Lark wrote a post on depression.  Reading her post really helped me to understand that I was in fact in SEVERE depression mode. I guess knowing that you are experiencing something is a lot better than trying to guess at what is wrong with you. Knowing I am depressed is something I can deal with and have been by just not giving in to wanting to lay in bed all day and sleep. Making myself get up and go to work takes my mind off my pain and this is my way of “treating myself” to something good, because I know that helping others always makes me “feel” better!

Humira PenMay 18 rolls around and it’s time for my first injection. It says on the box “do not give to yourself until shown how”. Well I figured I watched the video on Humira’s website enough that it should count for someone showing me… right? Saturday morning I got out my “pen” along with some ice; lay on my bed, iced my thigh and injected that puppy like I was an injection queen. It felt like a bee sting just like one of the girls in my support group told me it would. I was really surprised that it didn’t hurt because I was expecting to experience some burning or something. But nope all was fine until around four in the afternoon when my left hip started aching making walking a bit difficult. But overall I am happy that there was no pain! :0)

May 19 woke up with stiffness but overall doing good. Excited to be part of the World Autoimmune Arthritis Day online and looking forward to interacting with patients, doctors and others online. Went to log on and nothing! Went to the Facebook page only to learn that the website had crashed. I interacted as best I could through the FB page and learned some valuable information but I’m sure the experience through the main website would have been much better. Come to find out days after that the website was hacked; not once but twice. A healthcare symposium HACKED. Who the hell would do something like that? What motivates people to do such cruel and malicious things like this?  I have only one thing to say to this or these individuals “I hope to rot in Purgatory”.

WAAD13

“We will stand tall and we will broadcast what happened in the hopes that it draws international attention to the issue of cyber attacks, including the devastation and damage it caused caused to WAAD13. We deserved “our day” and our awareness, as well as the educational resources WAAD13 provided. While the Resources can be revised and provided to you in time, they should not be able to rob us of our awareness. We are strong believers, as proven by our timely response in the time of adversity, that we should not let ‘them’ win. WE, our community, should take this opportunity to talk about this,bring INTERNATIONAL EXPOSURE TO THIS ATTACK and what it took from us in the hopes that even MORE awareness will come to us and then, ironically, we win.”

Now it’s the end of May and last week I had a meeting with my supervisors to discuss taking a leave of absence. I initially wanted to take two weeks off and then resume 2 days a week for 12 weeks. This way with my short-term disability and working two days would cover my bills and my insurance. Unfortunately there is not enough coverage for me so they will give me what help they can until the end of June when another therapist starts working, then I can take 3 days off during the week. I think if I got those two weeks I could at least let my body recuperate to some degree but I guess everything happens for a reason, right? Until then with the FMLA in place I work when I can which means if I come in later, around noon, that would be fine! Really? That is just fine for them, just not fine for my body…. Next Saturday I take my second injection and I am very very hopeful that this medication WILL work!

4 replies »

    • Thank You Juliette, its through experiences like yours and others that have gotten me to this point in my life; knowing I am not alone makes all the difference in the world. Thank the stars for the AS community!

  1. I started taking Humira about two years ago. I’ve had good results with it, but I also don’t like thinking about side effects. I hope that it will help you. Thanks for sharing your story – I relate!

    • So far it’s working, I think! My feet hurt like hell in the morning, but I’ll take that over the pain in my back and hips. And I don’t even think about the side effects either! 🙂

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