Out of the Blue

It is 3:21 am and I can't sleep. Well, that's nothing new. For the past week, I've been waking up at around 1:30 am and it doesn't seem to matter how much melatonin I take - sleep just isn't working right now. Fortunately, it's Saturday morning, so I don't have anywhere specific to be in a few hours. I can be as relaxed as I need to. It has been a long time since I've written here. Not because I've magically gotten well - I haven't. I received test results today that show the disease is continuing to progress, despite the increases in medication over the past few months. My right knee doesn't really look like a knee anymore - I'll spare you the description. The knuckles on my left hand seem to expand daily. There is always back pain and joint pain. But I have been feeling great anyway, and I can tell you why: Because I choose to. Things are hard. I work full time. I am in school full time. I just added another eight hour/week job wi...

I think that my favorite line from just about any story or book is "...secret, and self-contained, and solitary as an oyster." Charles Dickens used these words to describe Ebenezer Scrooge, the quintessential miser and misanthrope. But you don't have to be miserly or misanthropic to be an introvert who enjoys quiet contemplation. Today is Christmas. Normally, I would have spent yesterday with my extended family, but this year the flu changed my plans. Instead of exposing my mother and the rest of the family to the virus, I decided to stay home. My daughters and I enjoyed the day as though it were Christmas; we opened gifts, had a long and satisfying brunch, and watched Christmas movies - including A Christmas Carol. Then, around 4 pm, they left for their dad's. I spent a bit of time cleaning up the house, talking to my sisters and mom on the phone, and then just sat. It was windy. The neighborhood was quiet except for my wind-chimes, which sang happily in the darkne...

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...

Decisions like this are so hard to make. One day he seems just fine - feeling good, a spring in his step. The next he is falling down unexpectedly, lying in the floor groaning, weakly flailing his legs. One day he eats his food with good appetite and seems comfortable. The next he eats and immediately vomits. Still, the good days outnumber the bad. Until this week. This week he comes to me and stares into my eyes, unflinching, trying to send me words or thoughts or maybe just his feelings. He presses his forehead to my knee and stands still, as if he's waiting for something. He does this over and over, and his old, grey face pleads for me to understand. He is tired. He is in pain. I sit there and run my fingers through his hair. It begins drifting to the floor, then falling in clumps. He groans again and lowers himself carefully to the floor, pointing his nose skyward to keep my hand on his head. His eyes. Those eyes... I am in pain, too, most of the time. But I know that ...

I'm not really sure why I'm writing tonight. I'm not sure I have anything relevant or meaningful to say. Today was wonderful. I felt great when I got up and I went out for an easy hike at a local park. After that, I picked up groceries. Shopping usually wipes me out, but I felt great even after putting away a car-load of stuff. After lunch, I went back out and picked up some pansies, then spent the afternoon planting them in the memory garden I made for my father this spring. Just as an aside, I bought yellow and blue flowers, because my dad was red-green color-blind. Blue and yellow were two colors he could reliably discern, so they seemed like the best choice. After I finished gardening, I cleaned up, grilled a steak, and had supper. Then I went back outside and set up a fire in my fire-pit. I sat there, watching the flames as darkness gathered. It was a beautiful day, in every way. At nine o'clock, I got ready for bed. I settled in and took my medication. Saturday ...

Last time I updated this blog, I said I was finally going to start Methotrexate, aka MTX. My doctor suggested I take the medication at night, just before bed, and she also suggested that I take it on Friday or Saturday night, so I could recuperate on a day off, because you only take MTX once a week. I decided on Saturday nights, mainly because Saturday is the day I spend catching up on housework, yard-work, and homework. I took my first dose of MTX last Saturday night. The side-effects were noticeable within thirty minutes. I got dizzy, then nauseated, but nothing worse than that. The next day, I felt tired, but not really much more tired than normal. All this week, while I've been on vacation, I've felt nauseated. It is a low-level kind of nausea, reminiscent of morning sickness. It was still as prevalent yesterday as it was the day after I took the meds for the first time. Last night, I took my second dose. This morning, I woke up feeling something I haven't felt sinc...

I saw my rheumatologist on Tuesday. She had the results of my most recent blood tests, which were two months old. The shortage of specialists means I only get to see her once every eight to twelve weeks, so the blood tests are always old by the time we review them. In this case, it was only a comparative review. She compared my numbers from July to the first tests I had done in early September of 2013, the tests I had run in January of this year, and the second set of tests I had done in April. There was good news and bad news. The good news is that there are no signs of lupus, which is what my current rheumatologist worried about. The bad news is that with the exception of a slight blip in April, my inflammatory markers and rheumatic factor have not changed since last year. This is despite nine months of treatment with Plaquenil and anti-inflammatories like Mobic and Relafen. I haven't gotten worse, but I haven't gotten better, either. The next step in treatment is Methotr...