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Showing posts with the label chronic illness

The Year that Wasn't

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'...

Just Another Day

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...

When Nothing Works

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...

The Importance of Access

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...