Out of the Blue

How can it be December already? For what it's worth, it feels like just a couple of months ago, it was spring-time; I was watching leaves pop out on the trees and reveling in the warmer weather and the hyacinths and daffodils blooming in my yard. I blinked - and slept a few times - and now it is December. The trees are bare and the landscape is grey. Where in the world did the time go? I've noticed that the older I get, the faster time passes. I'm sure there's an equation straight from Einstein's brain that would explain this phenomenon, but for now, it's enough that I've noticed it. I am older, time passes faster. Sometimes I feel like I'm standing still while the world whirls on around me. Is it any wonder I'm dizzy? Confused? Left feeling like I've missed important things? And yet each minute, each hour, seems to crawl by with the same snail's pace as always. Years ago, I sat with my dad in the hospital, waiting for my mother to come...

These are only dreams. Reality is very different. In reality, little boys can pick up their father's guns and kill the little girl down the street. In reality, a man can make an anonymous purchase over the internet of enough ammunition to kill a dozen of people in a crowded theater, or nine students innocently seeking an education. Reality is inescapable, except in dreams - which is likely why we need them so much. This is one of mine, cased in my reality, which just happens to suck today; I am in a lot of pain and don't have the energy or the guts to push through it and go on with work, school, life. Better to seek solace in dreams. I awoke in the night to the sound of the windchimes on the front porch. The curtains lifted, shifted; a breeze stole into my room. The night was black outside the window. The music of rain mingled with the chimes; fine-fingered droplets combed through the trees and if I held my breath, I could hear the the dying leaves sigh as they released their...

It has been an up and down, crazy kind of week. Some really good things have happened; the Supreme Court upheld marriage equality, for one. I am heterosexual but I believe in equal rights and am deeply passionate about my certainty that God loves and values everyone. Marriage equality seems to me to be a part of that. No one should be excluded from the ability to marry if they so choose. In addition, The Court upheld the ACA subsidy in states that did not expand Medicare, which is also an issue of human rights from my point of view. I believe that everyone should have access to health care and again, I believe that this is part of extending God's love in our world. Bravo, SCOTUS. Some not-so-good things have also happened. I have had health difficulties and life has become more problematic because of them. The Enbrel has not yet had time to take effect. I've been off Methotrexate for six weeks now, and my disease is flaring every few days. Fatigue, pain, fatigue, pain...the r...

Tomorrow is the big day, the day I've been waiting for since I was diagnosed with RA. Tomorrow is Enbrel day. I saw my doctor on April 9th and she prescribed Enbrel for me then because Methotrexate wasn't working very well. Unfortunately, I had a massive rash on the left side of my body from neck to the tips of my fingers, so I had to wait until that cleared before starting the new medication. That meant stopping Methotrexate and not replacing it with anything else for two weeks. I know that Methotrexate wasn't helping enough, but I had no idea how much it was helping until I stopped taking it. The last few days have been hard. By Sunday of this week I was walking with a cane again, and today was consistently painful from start to finish. The only medication I take for pain is Tramadol, and I take one of those daily, as needed. Today, I felt like I needed one every couple of hours. But the end of the day is here, and it is almost bedtime, and tomorrow is the big day! I am...

A year ago tonight was one of the worst nights of my life. Or I thought it was. It was the night when my boyfriend broke up with me after a year and a half of serious relationship. He had hinted at marriage several times, and it was understood between us that it was what we were both looking for. Then I got sick, and everything changed.. At first, he just seemed distant. Then it was more than distance - I knew he didn't want to be there when we were together. He was more than a million miles away. He wasn't even on the same planet. I asked him several times what was wrong, and if he was happy in the relationship. He would only speak briefly about anxiety and depression, but refused treatment. Pride would not allow him to seek help. It was something, he said, he had to deal with on his own. So he broke up with me and I really thought it would kill me. I nearly let it kill me, truth be told. After all, the rest of my life had fallen apart. What was there to live for? I had lost...

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 had a four day weekend for Labor Day, and being sick today turned it into a five day weekend. Last week was crazy busy at work and I really pushed myself to complete some tasks that were critical. I got home exhausted every evening, so my house was in terrible shape by Friday, and that was with my daughters helping clean after school each day. I was very tired when I got up on Friday morning, but I decided to clean house anyway. I've gotten a bit smarter about it, though - I clean for thirty minutes and then rest for thirty minutes. Or twenty minutes, or ten - the point is to balance activity with rest. So I made it through Friday pretty well and the house was clean by the end of the day. The girls went to their dad's that afternoon, and they each took their dog along, which left just me and Oskar, my shadow-weenie, at the house for three days. Talk about vacation! I was too tired to go out Friday evening, even though I had planned to go listen to some music with a friend. ...

On Wednesday, July 31st, I saw my new rheumatologist. The visit went very well. Though the wait to see her was longer, the doctor spent almost an hour with me, took my medical history herself, and asked a lot of questions. She was concerned with the amount of time that had passed since my first blood tests and did not understand my other rheumatologist's reluctance to treat my pain seriously. She declined to prescribe a narcotic, which was fine with me - I have no desire to live in a drug-induced haze. It's bad enough to deal with fatigue-induced brain-fog. The exhaustion makes it very hard to concentrate. She prescribed neurontin, to be taken nightly, and tramadol, to be taken as needed. So far, I've only needed it once. The neurontin has helped my back a lot, and it has the nice side effect of reducing anxiety. Unfortunately, it also has the not so nice side effect of causing nausea and vomiting. However, the vomiting only lasted a couple of days and the nausea seems to...

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...

In my last post, I talked about alternative treatments for RA. For the last week I have experimented with diet as a way to help control my inflammation. I was feeling pretty good by Friday, and on Saturday, I decided to eat "normally" in order to see if the change was real or only a placebo effect. Yesterday's menu included eggs and grits for breakfast, a sandwich for lunch, and spaghetti bolognese for dinner. I had oatmeal-chocolate chip cookies for dessert. I didn't eat too much of anything, but by this morning I had gained four pounds of fluid and I felt awful. My voice was rough, my sinuses inflamed, and my body ached, especially my left shoulder, both hips, and my right knee. I got up around seven this morning and I felt so bad that I thought about just sitting on the couch under a blanket and abandoning my original plan of heading out for an early morning hike. After some thought, I decided to go ahead and hike. Yes, I felt bad, but I would probably feel jus...

After my recent bad experience with Prednisone ( Touch and Go ), I have been giving a lot of consideration to alternative treatments and therapies for RA. Medications are wonderful when they work as they are meant to, but the lists of side effects with approved RA drugs are long and frightening. Probably the best of these treatments are the biologic medications - they work in two-thirds of patients, and slow or halt the progression of the disease. The problem is their cost. A year's worth of treatment with Enbrel or Humira could cost as much as $40,000. Health insurance may pay a portion of this cost, but because the expense is so great, most insurance companies require that all other treatment options be exhausted before approving biologics. Plaquenil isn't working well for me - I've been taking it since January and haven't experienced much beneficial change. I am reluctant to try Methotrexate because of it's side effects, which include hepatotoxicity, chronic he...

I seem to spend a lot of time this way - sleepless, and alone. It is Friday night and I am very tired. It has been a long week. Earlier this month, my rheumatologist prescribed prednisone in a low dose, and I have been feeling better, but the last few days have been physically difficult. I've been very busy at work - and thankfully, very able to tolerate that level of activity. But not pausing to rest took its toll. By Wednesday night, I was unable to keep food down. I think it was a combination of medication and over-work, with a nice dose of stress thrown in. I was sick for most of that night, woke up sick the next day, and ended up working from home just in case it was contagious. By that afternoon, I felt better. I went to work this morning and managed to put in a full day in the office. That's a good thing, and it's probably due to the steroid. The problem is that steroids aren't a long-term treatment. The rheumatologist said I could continue this course of treat...

One summer, when I was about six years old, I was wading barefoot in the spring below the house when I stepped on a shard of glass. It pierced my foot about two inches below my fourth and fifth toes on the right. Because the water was so cold, I didn't notice right away - it felt like I'd stepped on a sharp stone. I kept wading, kept playing, until the ache became persistent. Sitting on the stone steps that led down to the spring, I saw a small cut which had been washed clean by the water. It hurt when I pressed on it, but there was very little blood. I put my shoes back on and went on with my day. I didn't tell anyone. I knew only too well what happened when you told people about things like that. They wanted to probe around in the wound and make sure nothing was left in there. In my short life, I'd already had countless splinters dug out of various appendages, and I was not eager to experience that again. Besides, it was just a little cut. I kept quiet, but the pain...

Yesterday, I stood on top of a hill sprinkled with tiny yellow buttercups that danced and nodded in the breeze. The sky was bright blue with white ripples of cloud. Down the hill, families had gathered at the playground and the air echoed with children's laughter. On the path that wound around the hill's crest, an occasional jogger or dog walker passed. I watched and waited. Since I moved far away from home, I've developed a habit of searching faces for ones that are familiar. At first, I was "seeing" people I knew everywhere. In the past year or so, that's pretty much stopped. I've settled in, I guess. I've stopped looking for friends and family in the strangers around me. But not yesterday. Yesterday, I was hoping against hope to see a familiar face. So much so that I almost convinced myself that I had. But my heart knew I was wrong, even when my eyes were convinced otherwise. So I stood, and I waited, and let the wind blow over me. It was a beaut...

I woke up this morning feeling down. My eyes were swollen and gritty. My mouth and throat were bone dry. My head throbbed. No, I wasn't hungover. That's what a normal morning feels like these days. But today was outside normal; in addition to the usual pops, creaks, and groans, the joints in my feet, ankles, hands and wrists were swollen, red, and achy. Six hours later and the application of ice, heat, and long periods of rest, and they are a little better. I can walk without too much pain. I can type, which means I can write, and writing brings me joy. I've been thinking a lot lately about joy. It's been missing from my life for a while now. Happiness comes and goes, but joy has been absent entirely. Until the last couple of days. Just by chance, I happened to cruise across the animal shelter website on Tuesday night. I look once or twice a month, because you never know what you'll find, but I wasn't specifically looking for an animal to adopt. After all, I...

I had plans for today. I wanted to go hiking, or at least walking in the woods. If I didn't feel like being that active, I was at least going to go out, get groceries, maybe get a hair-cut, and pick up some broccoli plants for my raised beds. I knew that was pretty ambitious - I haven't had a lot of energy since the bottom dropped out of everything last week. But I thought I might at least get a couple of those things done. Uh. No. Sometime in the night, RA decided that none of those things would be happening today. And because I know there's always a chance that this will happen, I had some secondary plans I thought I could manage; laundry, cleaning up and decluttering my bedroom - which has gotten awful over the past week and a half. Nope. Not gonna happen. I woke up around three am and noticed that my mouth, throat, and eyes were dry and burning. That is never a good sign. I got up to get a drink and was still fairly mobile. A little stiff but nothing too bad. I ...

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...

It has been exactly three weeks now since I've had a call returned from my Rheumatologist or his practice staff. At this point I can't even get test results from these people. These results were promised to be ready on March 7th. I could fully describe my frustration, but I've always believed that profanity is the lowest form of communication, so I'll pass. Suffice it to say I am thoroughly disgusted. So - moving on. I've made a new appointment with a different provider who comes highly recommended. Her practice is about twenty miles away but it will be worth the drive if she will just listen and work with me to devise a treatment plan. In the meantime, I will continue to take Plaquenil and manage my pain as best I can. It is certain that my current doctor isn't interested in helping to treat it. Friday morning, I woke up with the "knuckles" of my big toes on each foot swollen and throbbing. My feet and ankles were puffy and creaky. My knees and ...