Monday, April 11, 2011

A Very Rheumy Anniversary

I started my blog almost three years ago to the day. In the first 10 days, I posted nearly 50 times. I didn’t know what I was doing, as a blogger or as a patient. I felt like my life had been robbed of something that I would never get back.

I can’t quite put my finger on what I was robbed of because I don’t view the situation the same way now. Certainly my life has taken turns that I never expected it to. But it has brought some pretty amazing people into my life, and maybe some not so amazing, but that’s a whole other issue.

Recently, I asked my rheum to write me a letter for a scholarship I applied for. Along with information about my diagnoses and disease manifestations, he wrote the most thoughtful letter about me, thoughtful to the point that it brought tears to my eyes.

And this is a true testament to how our relationship has changed. When I first started seeing my rheum, the relationship was strained, to say the least. I really did not like him, and I believed that he felt the same way about me. We fought about treatments and the fact that he believed I should quit school.

I’ve often joked that he’s the longest relationship I’ve had with a man other than my father. And this continues to be true, unfortunately.

He has been a constant in my life, and I am truly thankful to be under his care. I worry about someday moving out of Michigan and having to find a new rheum. But for now, I’m satisfied with what I’ve got.

In many ways, it’s weird to try and celebrate something that most people think of as being a negative experience. On the other hand, if we don’t celebrate the triumphs, and we only focus on the tragedies, well, the picture is pretty grim, then, isn’t it?

In many ways, I view this time as the place that my old life ended and my new life began. I’d like to say that this is just a chapter in the book that is my life, but it is so much bigger than that.

There are still things I have yet to come to terms with, like the fact that my emotions are heightened. The good feels better, but the bad feels worse.

It crazy to think that another year has gone by already. It seems like only yesterday that I began the adventure of diagnosis.

There are many dates to pick from that hold significance as far as my illnesses are concerned:

July 16, 2006 was when I had a massive episode of vertigo, which turned out to be a rare precursor symptom to lupus.

September 11, 2007 was the first appointment I had with my new PCP at the time. So began the “fishing expedition” to find out what was wrong with me.

January 9, 2008 was my first rheumatologist appointment.

April 9, 2008 was the exact date that I was diagnosed with both lupus and rheumatoid arthritis. It was a long, difficult road to get to that point, having to relive and examine my entire medical and family history. There are so many theories, and at this point, they truly no longer matter. My life is what it is.

In some ways, this commemoration feels a bit forced to me. I feel like I should have profound things to say about lessons learned and where my life is headed. But right now, today, I don’t really.

Maybe I’m feeling overwhelmed, for several reasons. One, I’ve decided to begin working, in earnest, on my memoir, the story of my life so far. So I’ve spent the last few days going through all of my posts from 2008 for inspiration. And this is a very overwhelming task.

Maybe it’s because I attempted go for a run yesterday and ended up facing lupus and rheumatoid arthritis right in the eye. I am definitely worse for the wear today. My hips are killing me. And I had a nasty lupus-induced reaction to being out in the sun.

And maybe it’s because, in some ways, this moment is rather anticlimactic. I find myself, once again, facing an uncertain future on my own.

The date that I didn’t mention above is April 17, 2008. That was the day I started my blog, the day I made the certain decision to put myself firmly into the chronic illness world. So maybe more than anything, that’s what I should be celebrating. That I’m still here, still writing, that despite everything that has happened over the years, the one constant and consistent thing has been this blog, and its loyal readers/followers. And that, as I attempt to work on my memoir, this whole illness experience has put me one step closer to my lifelong dream of being a published author. So I guess I do have something to celebrate after all!


  1. Strange coincidence - I was diagnosed on April 9, 2007. I wrote a post last year about my rheumaversary, but haven't done it this year. It's an odd thing to commemorate, isn't it?

  2. That is a strange coincidence. And well, I think that the more time we spend with these illnesses, and the more they become an inextricable part of our lives, rather than our lives and our illnesses being separate entities, there is less to celebrate. It's not a special date on the calendar anymore. It's just life, an everyday thing.

  3. Happy you continue to write, Leslie!

  4. Happy almost blog-o-versary! While I'm sorry that you had such upheaval in your life, I'm grateful that you chose to blog about it. Your blog, and the courage you show in your writing, inspires me on a regular basis. Thank you!

  5. Congratulations!

    Thank you for continuing to write so candidly about your Lupus/RA. Your courage and tenacity inspires me to live as fully as possible with Lupus.


  6. The times when things aren't going as well as possible are difficult, especially around anniversaries, I think.

    Oh, I remember when I first was blogging about diabetes, that tendency to want to spill my guts out. I ended up deleting a lot of those posts, unfortunately.

    Happy blogiversary in just a few hours - so glad your voice is out there.

  7. It is funny how things that seem so momentous at the time change shape as our experience changes. Keep us posted on the memoir!