Out of the Blue

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'...

In 2004, William Bridges wrote Transitions: Making Sense of Life's Changes. The subject of the book is exactly what it seems to be; Bridges explores the changes we experience in life and how we tend to handle them. During the course of the book, Bridges suggests that before there can be a beginning, there must be an ending. In other words, something old has to stop before something new can begin. Thus the title of this post, "The Beginning in the End." And also, if you're a fan of the TV show Bones - I am - then you recognize it as a nod to the 22nd episode of the fifth season. In that episode, nearly everyone who worked together at the Jeffersonian scatters for the four corners of the earth. It is the end (seemingly) of a very successful team and partnership. I started working at Cherokee Church in 2009. It was another beginning in an ending. My 18 year marriage was dissolving and I needed full-time work to support my kids. In order to come to Cherokee, I had to re...

I consider myself lucky because I don't have enemies these days. In the past I have, unfortunately, known people who wished me ill. Some of these people actually caused physical, emotional, and psychological damage. But that time in my life is over, thank God. These days, my greatest enemy is... Stress. I bet you thought I was going to say myself, right? Well, at one time in my life that would have been true. I have been at war with myself off and on for most of my 40+ years. But not anymore. If there is one thing that years of therapy has done for me, it is to remove my ennui toward who I am. No, I am comfortable with myself. I know who I am, what I love, what I need, and what I want. I have a realistic sense of my own self-worth and a willingness to work hard for the good things I deserve, whether those are relationships, better health, or just quiet down-time. A lot of my stress comes from my job. Most of it, if I'm being truthful. When things are good there, I love it...

Well, not really. Not everything. I love my dogs. I love my kids. I love being outside, especially in the woods or by free-moving water. I love learning something new that is also interesting. I love working with my hands - gardening, building, refinishing, crocheting, painting. I love hiking, I love using my body to do incredible things. I love going to the gym. I love mowing my yard. I love spending time with friends. I love movies. Music. Books. Poetry. Writing. What I really hate is my illness. I hate the way my body is attacking itself. I hate getting one joint through a crisis only to have another joint fail. Hands, knees, shoulders, back, hips...one after another, like a cascading systems failure, and I can't stay ahead of it. I hate being in pain all the time. I hate having to ask my daughters for help with simple things like walking my dog or cooking a meal. I hate taking multitudes of medication and not feeling any better. I hate washing my hair because that means losin...

For the past week, I've stayed at a ten on the pain-scale. Monday started out well - my knee felt good, the rest of me was fairly level. Things took a sharp nosedive with an extra dose of emotional distress on Tuesday morning, but I shook that off fairly quickly. It was just a confirmation of what I already suspected; that a person I had spent a lot of time loving had become someone I didn't know anymore. I didn't want to accept it, but denial only lasts so long. I've spent the past three months mourning the loss of that love and it is time to move on. So - I'm doing that; living life, focusing on being happy and getting well. Wednesday morning, I got up and tried to leash my dog to go for a walk, and I threw my back out. Immediate agony flared across the L5 region. I couldn't straighten up. So I did the bent-double duck-foot shuffle to the couch and pushed myself upright. SCREAMING pain. INCREDIBLE pain. Fortunately, my seventeen-year-old was home and she hel...

I had the final visit with my current rheumatologist today. If you haven't been keeping up, let me recap: I started seeing this particular doctor in January. I have been unhappy with his level of involvement from almost the first visit. I decided to change doctors when my current rheumatologist took over a month to give me results of an important blood test despite my having called and left several messages. Then when I saw him again, he wanted to make important decisions about my treatment based on results that were six weeks old from a blood test that had been done only a month into the treatment plan. In March, I made an appointment with a different doctor, but because the waiting lists for specialists in this area is so long, the first appointment I could get was at the end of July. About a month ago, I injured my right knee while walking. I heard a pop and then there was bruising and swelling. It was somewhat better in a few days, but every time I am more active - for active...

I have been plumbing the depths of my soul looking for some words of motivation or of hope. All I come up with is flat, meaningless platitudes. I tell myself things will get better. I tell myself I will learn how to cope with this pain. I tell myself that things aren't as bad as they seem. I am such a bad liar. A few years ago at Lent, I gave up lying to myself. It has become a habit to be personally truthful and I think that for the most part, that's a good thing. But it leaves me unable to self-comfort. I can't tell myself little lies and believe them, the way I used to. But I can still live in denial. It is a comfortable blend of not examining where things are or admitting how desperate I feel. I don't have to lie to myself to do this, I just don't spend time in self-reflection. I avoid examining how I feel. I push myself into other things; mindless things, like marathons of The Walking Dead or Supernatural, or hours of mowing my lawn - using the riding ...

I took a long walk through a cemetery today at lunch-time. The sun was buttery and bright, and the stone bench at the monument for Psalm 23 was rough and warm as I sat on it and leaned back against the rock. I closed my eyes and turned my face up toward the sky. The wind was blowing cool but the sun was stronger. For the first time in thirteen days I felt some peace. I've spent the past two weeks in near-constant prayer for one person or another, myself included, but the prayers never felt connected. They were incoherent, desperate cries for help. And that's what brought me there in the first place. I woke up this morning after only two and a half hours sleep with my body shaking and my eyes burning. I shook so hard I could barely get dressed. Because I felt so weak, I made myself eat; peanut butter toast with honey. I am down thirteen pounds since April 9th. Not necessarily a bad thing, but when you lose 13 pounds in 13 days because your stomach hurts so much that even the t...

Have I ever mentioned how impatient I am? I want to know everything. And I want to know it right now. When I first suspected I had RA, I immediately began learning everything I could about it. I spent hours - probably days - learning about how RA works, what drives it, what might affect it, and how to best combat it. I read up on the blood tests used to diagnose it, how to understand the lab reports, and what the medications could do to help. In becoming more informed, I became less fearful. Long before I ever saw a Rheumatologist, I knew about my condition, the medications that were likely to be prescribed, and about how the disease might progress. I tend to approach life this way. Knowledge is my armor, my shield, and my sword. I use it to both protect and defend myself and the people I love. There are other ways to fight, and I use those too when I must, but knowledge is my preferred tool. When it doesn't work, when words fail, I am left scrambling for a position that is tenab...

Since Wednesday, April 9th, I have not been able to keep solid food down or in my body. Right now, I feel about as empty and cold as I ever have. I spent Saturday in the ER, receiving fluids. The PA there was very caring and concerned, and it wasn't long before I was diagnosed with a severe kidney infection. I received Rocephin for the infection, morphine for pain, and another bag of fluids because I was so dehydrated. I came home on Saturday afternoon and ate some watermelon. I was very sick afterward. I didn't feel much better on Sunday morning, but again, I ate some solid food and lost it almost immediately. By lunch-time, I felt a bit better from having consumed about 20 oz of sports' drink. I ate a quarter of a piece of pizza, drank some water, and then I mowed the yard. Ok, I know how crazy that sounds. The day before I was lying in a hospital bed, shaking and unable to control my breathing, numb in my face and my extremities, and now I'm mowing the yard? How do...

Those of you who have been keeping up with this blog know about the problems I've been having with my doctor. I made another request this week to get results of my bloodwork, which was taken on March fifth. Yesterday I got a call back from the nurse who told me that the results were back (as if I didn't know that already, it had been a month!) and that my markers hadn't changed much - I showed a one-hundredth of a percent of improvement on my SED rate, but that was all. Then she asked how I responded to the steroid. I reminded her that I had called her about it several times and had left messages to say that it worked pretty well. I also reminded her that the doctor had said I could continue low-dose steroid treatment to help with the pain and inflammation. She replied that the doctor did not continue steroid treatments, despite the fact that they both told me he would. I felt completely jerked around and I told her so, though I used different words. She did not try to ex...

I've been struggling with how to write this post for over a week now. I've written and deleted, written and deleted, and finally I decided just to say what's on my mind. I am angry at my rheumatologist. There. I said it. It took months to get in with this doctor and now neither he nor his nurse will return calls. I had another panel of blood-work done two weeks ago and they still haven't answered my request for results, even though they said the results would be available on the seventh of March. I had a steroid shot on March fifth, which was supposed to be repeated every two weeks, but my rheumatologist has decided that since it took a bit longer for the steroid shot to work - seventy-two hours rather than forty eight - my pain must not be related to my medical condition. And that's just stupid, folks. It makes me want to scream and kick something, except I can't stand to kick anything, because my toes and feet hurt too much. The last thing I wanted to ...

Yesterday, I received a call from the rheumatologist's office asking if I could come in for an early appointment the next day. The test results were back, and they had a cancellation, so the timing was right. I said I could, and asked if they could tell me about my lab results. The woman on the phone declined to discuss it because she was a member of the office staff. So I settled in to wait. Knowing that I would soon find out about my condition and prognosis made me very antsy, very unsettled. I didn't sleep well, but I woke up feeling just about par. Time and a hot shower took care of most of the stiffness and by 8 am, I was on my way across town to see my doctor. He went over the x-ray results first, assuring me that there was no discernible damage in the joints of my hands. He said there was damage to other joints - knees, hips, elbows, and shoulders, and that it was made evident by the grinding, crunching noise these joints make whenever I use them. He said my lab work w...

Yesterday started out clear and cold, but by late afternoon, clotted clouds covered the sky. I didn't have to look out the window to know that, because the waves of exhaustion and low-grade fever started rolling over me at around 11 am. As soon as that first burning sensation in my ears and eyelids hit, I knew that a low-pressure system was moving through. Most of the prevalent information that is available insists that people with rheumatoid arthritis have never been proved to suffer unduly during rainy or cold weather. The prevailing information is wrong. Yesterday's exhaustion was debilitating. I was at work when it hit, and found myself in danger of nodding off in the middle of some critical tasks. I consumed coffee and went for a walk through the building, hoping to wake myself up. It helped a bit, but when I came back to my office and settled in again, sleep washed over me until I felt as though I was drowning. I put aside the bank reconciliations I was doing and inst...