What’s Up with Suffering Sux?

Me in ICU this past June 2011 with severe pneumonia.

I was once a fairly average, extremely active and motivated woman. I founded a nonprofit organization called Cyclists Inciting Change thru LIVE Exchange (C.I.C.L.E.) which promotes city bicycling as a viable, sustainable and healthy mode of transportation.

Unfortunately, in 2000 I was diagnosed with Lupus which dramatically altered my life. Pain, extreme fatigue, daily fevers, etc. suddenly became my new reality. For about eight years my disease was fairly well-managed with pharmaceuticals, and I adapted as best as I could.

But in 2009 my life took a horrible (and life-threatening) turn for the worse. My lupus manifested into vasculitis. Basically, my immune system suddenly decided to attack my own arteries and blood vessels.

To control this disease a variety of drugs with horrible side effects are used. In my case chemotherapy, high-dose prednisone and a mish-mash of immunosuppressant drugs were, and are still being used to… basically, keep me alive and to minimize the chronic pain.

I spent the better part of last year in the hospital and acute rehabilitation just to try to get this vasculitis beast under control (not fun).

A fairly healthy me--with Lupus, but pre-vasculitis days.

Major side effects accompany these drugs, and because I’m very chemical sensitive, I managed to rack up a whole slew of them. Cataracts, diabetes, liver toxicity, severe osteoporosis, avascular necrosis, fractures of my back, major immunosuppression,weight gain and metabolic/hormonal shifts all have come as a result of the drugs. The drugs can almost be worse than the disease.

Consequently, I am now wheelchair bound, I’m weak, in pain and constantly live with the threat of relapse, as lupus vasculitis is a remitting and relapsing disease with no cure. And my overall prognosis is, uhm… not so good.

So… I’m not going to lie, SUFFERING SUX! This blog is about that—good old fashioned suffering. My journey is sometimes humorous, sometimes painful and definitely honest. I think this blog will function as a form of catharsis—a way to expel the demons that haunt my mind and soul.

I’m just one of a multitude of suffering souls. If you happen to be one, share your story—a sense of community can help combat the feelings of isolation that we all share. If you’re a normal healthy person, you’re welcome to journey with me as I face an uncertain future.

Comments
5 Responses to “What’s Up with Suffering Sux?”
  1. Thanks for sharing. I was an elementary school teacher and riding bikes too, before my surgical accident sent me into a spiral of surgerys to fix the results of the first mistake. This resulted in a diagnosis of mylitis… a lesion on my spine. I can’t move well. I use a walker, and miss riding my road bike. Sometimes I forget and refer to my walker as a bike 🙂 But, the longing to ride again has quieted somewhat. I feel fortunate to have family to comfort me. And, I am glad to have found your story. Reading about you having gone down a similar path from health and cycling to chronic pain and immobility issues, makes me feel a kindred spirit. I am not on alot of pharmaceuticals now. I have had infusions of steroids that cause the weight gain, and that is hard to face, along with the prospect of a wheelchair future. But, then, I also have the prospect of a future. That’s always a good thing 🙂
    http://www.reason2believehim.com
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    My blog is on the website. I try to keep it copied to the wordpress blog as well, but am way behind on wordpress. Have a great day “INSERT YOUR NAME HERE!”
    Vicky

  2. shaylien says:

    Thanks for sharing your story with me. I find that it really is helpful to commune with others in similar situations. I, too, am VERY fortunate to have a supportive family and network of wonderful friends. And honestly, without them, I don’t know if I would have pulled through on at least two occasions. It was their strength of spirit that kept up (and continue to keep up) my fighting spirit.

    I’m sorry to hear about your spinal accident. I am sure that the incident haunts you still. But, it sounds like you have learned to cope with your situation in a very healthy way, and your story also provides additional strength and hope for me. To be honest, I’ve slipped, just ever slightly, into a bit of a “dark night of the soul” stage. I’m only coming into my second year of facing disability and still wrangle with the prospect of relapse. But, luckily, my support network, humorous outlook, and spirituality serve to carry me through the darker moments. And connecting with people like you, add to this strength and to a sense of a greater community.

    I made a brief visit to your blog. Lots of interesting stuff! I’m looking forward to exploring it further.
    Thanks again… and I’m sending lots of light and good energy your way.

    Sincerely,
    Shay

  3. LaRue says:

    So sorry about everything-I’m sending prayers and good thoughts your way.

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  1. […] makes stuff, but all of that has been taken away from her, along with her beloved bicycle riding. Here is Shay’s story in a nutshell, written at a time when she was doing […]



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