Happy Blogiversary to Me

Photo by Donald Tetto

No Poster Girl is one year old.

It took a long time for me to be convinced to start another blog. Many, many people had suggested it to me, including a bunch of friends who’d followed my old food blog, She Spills the Beans, but I just didn’t think I had that much to say about being too ill to do things like wash my hair. And it turns out I have had a lot to say about things like being too ill to wash my hair, and that shockingly, others will come by and read about me not washing my hair. Hi others!

I want to thank all of you who take time out of your day to come by for doing so. I’m grateful for the visits, the comments, the encouragement, the sympathy. I’m grateful to the well for being interested enough to learn about those of us who are sick and grateful to those of you who are sick for spending some of your precious energy here.

I think the rise of ME/CFS blogs is one of the greatest things to happen to the ME/CFS community. After I was diagnosed, it was several years before I personally knew somebody else with the disease. And now, through blogs (and the power of facebook and twitter), I know tons of somebodies with the disease, and we’re able to harness our collective (low) energy to support each other and for activism’s sake.

So since I’ve finished up a year here, I thought I’d do a bit of a roundup. It’s been an interesting year. I expected to talk about myself, but I’ll admit I didn’t expect to end up in the middle of a charity contest controversy – twice!

I started out by explaining the blog’s title, then bringing some questions I’d answered on my formspring over: Alphabet Soup ME/CFS vs. Fibro | Current Treatment | Where Did You Get It? | One Fine Day How It Feels

I bought a Zeo (and later returned it), we went over my 56 pills a day, and I explained the basics of the disease a bit. Then I had a crash.

We talked about the most famous ME/CFS patient, my house, the disaster that was the PACE trial and the CAA’s response to it.

I got a fever, explained why I would make a great criminal, worried about making the right treatment choices, and discovered where the fever came from.

I put down in pixels a four-part story of how my illness began: The Flu Shot | Chicago | Chicago Once Again | The Crash and the Aftermath.

I tested negative for XMRV, put together a primer on the disease, went for my third annual appointment with Dr. Cheney, and detailed my infamous, fearsome insomnia in a two-part series.

Then there was a bit of a digression in the form of that little kerfuffle with certain charities cheating in Chase Community Giving. I | II | III | IV | The End

We dealt with another digression in the form of the editorial expression of concern.

I got back on topic with a post on how the illness has had an unusual effect on my figure with Thin Thighs in 35 Years, and then promptly off topic again when certain groups proved not to be playing fair in Vivint Gives Back, but this time, we got a better resolution. I | II | III | IV | V

I talked about managing the everyday, found myself in IRIS, talked about illness words and what they mean to me, dealt with more IRIS, ranted about the illness narrative, gave some advice about what I learned the hard way, let Chimp have his say twice, and talked about my teenage battle with depression and how it’s different than ME/CFS.

And that brings us to to the beginning of year two. Thanks for coming along for the ride, y’all.

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23 Responses to Happy Blogiversary to Me

  1. kathy d. says:

    Congratulations on your Blog-o-versary! What a milestone! We thank you for writing such a well-done and interesting blog, which is so right on target for those of us with CFIDS.
    I can see that I have a lot of homework to do here, catching up with the many blog posts which were put up before I had the good fortune of finding this website.
    Best wishes in the coming year for this blog and for your health. (I keep my fingers crossed for some new breaks in research and treatment.)

  2. BreatheEasy says:

    All of us with greasy hair and Perpetual Pajamas wish you a Happy Blogiversary!
    Thanks for keeping us smiling while we face the gruesome realities of this disease together.

  3. lewwaite says:

    What a blessing your words have been to me. I hold you in highest regard. You are the embodiment of the quote: “Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful people with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan “press on” has solved and always will solve the problems of the human race” Love you.

  4. Patricia Hess says:

    Congratulations on your one year anniversary!

  5. Great summary but it’s gonna take me a while to work through the back catalogue. I really appreciate being able to wash my hair, it keeps me sane. At least when a bomb hits the kitchen, I can close the door. But my head follows me everywhere. 🙂

  6. Love the candles and the accomplishment! Way to go Best Girl!

  7. kathy d. says:

    Now I know why you have such a positive attitude about facing the obstacles with this disease. Not only do you have a terrific partner, but your parents are wonderful, too.

    • Jocelyn says:

      I’m very, very lucky in that regard, Kathy. While I’ve encountered my share of useless/disbelieving doctors, I’ve gotten nothing but support from my large family and many friends, which is what really counts.

  8. happy blogiversary, Jocelyn! Thanks for the beautiful blog.

  9. kathy d. says:

    Glad to see the lawsuit against Harvey Whittemore news at your Facebook page. It feels good to see the chickens come home to roost. There is a mention of the WPI in regards to his financial wheeling and dealing up at the ME/CFS Forums, where Nevada Energy gave a big grant to WPI.
    When I first heard of WPI, I looked up Harvey at Wikipedia, which raised several questions about his ethics. He had lobbyists friends and managed to get a weakening of environmental protections and workers’ rights in Nevada. But there were questions raised about his financial actions, implying ethical violations.
    Anyway, I hope this means that Dr. Judy Mikovits will get judicial fairness in her case. It also explains to me why the Whittemores went after her for financial damages. As a famous line by the O’Jays years ago was, “Money is the root of all evil.” It sure can be.

  10. angel says:

    Please read book Vaccine-A
    They put illegal oil adjuvant compound which is squaline. Which cause many autoimmunes damage to peripheral nerves that control all organs and systems

  11. angel says:

    I meant sqalenen MF59 illegal oil adjuvant compound
    Pls google it
    I’m like you after jabs came with this. Now 4 years later wasting, 99.9 %bedriden with 50symptoms before iwas healthy as you and everyone I know took jabs in last 10 years developed some kind of autoimmune including CFIDS
    Look into bill gates and his speach bout reducing worlds ppl by 15-20% by forcing vaccines to africa, UsA, UK etc, he is trying to do this all over the world. In his speach he slipped and said this will eliminate many ppl
    Its outrage

  12. angel says:

    Will I get this right
    Icant even type
    Its squalene

  13. Amulya says:

    I just discovered your blog 🙂 Thanks for sharing! I have read several posts and will definitley read more. Do you know of any good CFS forums? I Googled them but not sure which are the best ones, there are several.

  14. E. Milo says:

    I hope it’s okay that I referenced your site and your Blogroll in my blog today (http://elizabethmilo.com/2012/11/24/the-mecfs-blog-community/). Maybe there is a list of ME/CFS blogs somewhere else, but I haven’t found it. Thank you for all your detailed info!

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