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Do I Dare?

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 In 2013, after the loss of my beloved father, I started having multiple health issues. It began with several UTIs, or maybe one long-lasting UTI that seemed to clear up but kept returning. Then, I had two kidney stones. From June through September, I felt terrible most of the time. I was exhausted, struggling to push away my grief, and focused on a job that brought me no joy. I was in a relationship that I depended on with a man I loved and trusted completely; I’d have cheerfully laid down my life for him. This was no small thing since I do not trust easily. I recall waking up one Sunday morning beside him, stretching, and crying out in pain. My entire body hurt. There wasn’t a muscle or a joint that wasn’t affected, from my neck to my toes. I felt as though I was catching the flu, complete with the full body aches, fever, and exhaustion it brings. Cold fear welled up in my mind; the recollection of that moment is as sharp and clear as though it just happened yesterday. I knew what
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The Year that Wasn't

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I have not looked at, or even thought about, this blog for quite sometime. On March 13th, 2020, I was preparing to go home from work for what we all assumed would be a two week break while we worked out how we could keep a college campus open and still manage to stay healthy in the face of Covid-19. We were closed to the public that afternoon as we scrambled to clear out our offices so they could be deep cleaned and sanitized. My assistant and I went through the building, wiping down doors and surfaces. We talked about what we would do to stay safe when we returned. We shared our worries - I am younger than she is, but her health is better than mine. Still, we both fall into a high-risk category for severe or deadly infection from the novel coronavirus. We filled out forms to enable us to work from home for the next two weeks, and I put together a list of tasks for us to complete during our time out of the office.  Two weeks turned into five months - 2020 became the year that wasn'
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Just Another Day

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I threw my back out last Saturday. I've always thought that saying "I threw my back out" is funny - it doesn't really mean anything, but everyone knows exactly what has happened when I say it. I'm in terrible pain at the L5/S1 vertebral area. I can't bend, find it difficult to lift my legs to walk, and turning over in bed is agonizing to the point of impossibility. Let me be crude but honest as I include that bathroom processes are now greatly complicated for a number of reasons, from getting there to cleaning up, to getting up and getting my pants back in place. We never realize how much effort goes in to simple activities of daily living until we aren't up to performing them. I have missed the last two days of work. I have tripled my steroid intake. I am alternating heat and cold therapy and have included my TENS unit and seen a chiropractor. The pain is still pretty bad. I have to go back to work tomorrow, and I'm not sure how I'll get through
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When Nothing Works

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In August of this year, my doctor finally convinced my insurance company that the traditional TNF blockers like Simponi, Enbrel, and Humira weren't working for me. She prescribed Orencia. It is a once-a-month infusion, and finally - FINALLY - something is working! Is it a perfect cure? No. But I have been able to wean off steroids - I took my last 2.5 mg dose last week. It is taking my body some time to get adjusted to not having that Prednisone boost, but this morning, I woke up with a bit more energy and a bit less stiffness. However, I have been through a year-long odyssey of unabated pain, swelling, and joint deterioration. I started writing about it in July of this year, but it was too depressing to continue, so I let it go. During that year of extreme fatigue and pain, I almost believed that I would never get better; that the dark hollow I found myself inhabiting was the extent of my life. Thankfully, it was not - but I know that there are more valleys and hollows ahead. That
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Bridges

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I'd like to have a nickel for every time I say the words "I'm tired" during the day. If I did, I could probably afford to go on a nice vacation every year. I'm tired is the phrase I say most often, and usually when I say it, I am speaking in relation to my physical state. But sometimes, like today, I mean it in relation to what is going on in the world around me. I'm tired  of living as a blue woman in a red state, of pretending to fit in to the general political climate around me. I'm tired of holding on to a pleasant expression when someone comes up to me and tells me, straight-faced, that Sandy Hook and Parkland aren't real and that the mass-shooting in Las Vegas didn't really happen. I'm tired of being taken to task by relatives who disagree with my politics, my faith, and the way I live. I'm tired of people saying that they agree with Trump about immigrants from what he calls "shithole" countries, and then the
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Loss and Gain

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I've lost some things recently - my best friend, back in January; a beloved honorary niece, in February; the little dog who saved my life three years ago, in July. My friend died of complications from a brain tumor. My niece was tragically killed in a terrible accident that took three of her friends as well. My little dog, Oskar, died of cancer the week after my birthday. Maybe it doesn't seem as though Oskar should be listed with these other, huge losses, but the people who know me understand that being listed with my dog means I really, really love the people I mentioned. It has been a strange and terrible year. The recent rise in racial tensions, the troubling changes in our government, and the lack of leadership at the highest levels have combined to create a great deal of stress for most of us. The emotional pain of loss complicates that stress. That is why I have not written much in the past months; it takes most of my energy just to get through my days, work, and home.
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The Importance of Access

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It is no surprise to my faithful readers here that I have a chronic health condition. I was often sick as a child, but as an adult I had pretty good health, until 2013, when I was diagnosed with Rheumatoid Disease. I know, I'm walking old ground with this, but bear with me. It is important for people to know that autoimmune diseases like RD, Lupus, and MS are very expensive to treat. My own experience is with Rheumatoid Disease. I have been in treatment with biologics since 2015. Biologics are a new class of medication that work by blocking something called Tumor Necrosis Factor (TNF) in the body. No, I can't be more specific than that, because I really don't understand myself. The best I can do is to say that the biologic meds I have taken have dampened my immune system so that it no longer attacks healthy tissue - well, at least for the most part. I've been treated with Enbrel, which worked for a short while, and now I am using Humira, which seems to be helping. Unf
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