Out of the Blue

The tree is up. Stockings are hung. Most of the gifts are purchased and wrapping will begin in a day or two. My kids are safe and will be with me for Christmas. I have the next two weeks off. We will have (too much) food and we will have a lot of fun, I have no doubt. I am blessed, and I know it. I'm thankful. But I am also deeply sad. Sometimes I find it difficult not to just break down and cry. I put on a carefully cheerful mask every day and I prop it up with smiles and laughter. Sometimes I even feel those happy feelings. Then darkness comes and I'm tired; I go to my room and settle in with my dogs, and the tears come. I guess it would be wrong to start a post like this and not explain why I feel the way I do, but the truth is, I don't really understand it myself. Maybe that's why I'm writing this, to work it out and try to comprehend it. Terrible things have happened in the world - Syria, Aleppo, and South Sudan are a few examples. I think of the people...

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...

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...

It has been about a month since I started following an anti-inflammatory diet. I am very pleased with the results. Through trial and error, I have discovered that processed, white flour based foods are my primary trigger for inflammation. Pasta, bread, and desserts are the main culprits, though I've found that I can have dark chocolate or a small amount of sugar as long as I don't eat gluten or flour-based products at the same time. I've started putting together a short list of recipes that I hope to lengthen. There are a lot of good gluten-free products out there, and I've been trying some of them out. However, I don't intend to simply replace processed carbohydrates with processed carbohydrates. I'd like to continue to reduce the amount of processed foods that I eat. This weekend, I harvested tomatoes and squash from my raised bed garden. I also had flat-leaf Italian parsley and sweet basil. I diced the tomatoes and added the herbs, half a cup of diced zucch...

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...

On the sixth of May, my Rhematologist prescribed low-dose Prednisone to help with my progressing RA. I'd been taking Plaquenil since the end of January and hadn't seen much change in my condition. So he suggested stopping the NSAID Relafen and starting with a daily steroid. I did not want to take steroids for several reasons. Weight gain was my primary concern, but it turned out to be groundless; I actually lost weight while taking it. The common side effects for Prednisone are insomnia, infection - I'm already at higher risk for that because of the Plaquenil - excess stomach acid production, excess appetite, and nervousness. However, I also wanted to feel better physically - the pain was difficult to manage, and the fatigue was almost impossible, so I said yes to Prednisone. Initially, I did feel better. I was more physically able to keep up with my days. I had less stiffness, and the tendonitis in my right elbow went away entirely. Overall, I felt closer to normal phy...

Yesterday was beautiful. Blue sky. Warm sunshine. It was humid but not unbearable. My bones, joints, and muscles felt okay, so I got up and went hiking in the Cherokee National Forest, which is practically just out my front door. My love of the woods is something I got from my dad, and that's why I chose to go hiking yesterday to mark the day of his death. Also, I needed to be somewhere else, doing anything I could to keep from thinking about the loss. When I was around fifteen, my dad and I would go walking in the woods around our farm. He would tell me stories about where the brandy distillery used to be, relatives who used to farm the land, or take me to see old abandoned houses that were hidden in the forest. He knew everyone who had lived around there and could tell tales about all of them. One of the most difficult things about having RA is that it limits the amount of hiking I can do. There's nowhere I feel closer to my dad than when I'm in the woods. Since I...

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...

I never thought I'd spend so much of my time writing about pain. Looking back over the years I've been blogging - since 2008, though those old posts don't exist anymore - I can see that by far, most of my posts have been about pain, either emotional or physical. I used to write about emotional pain - the result of abusive relationships, loss, and sexual violence. These days I'm more caught up in physical pain, though emotional pain still has it's unfortunate place. When I was a kid, I mostly ignored pain. I was raised that way. If I complained of a headache I was invariably told, "you're too young to get headaches" and I went on with whatever I was doing. Obvious sickness received whatever treatment was necessary. My parents were not cruel, but they were practical; they knew that working on a farm was physically difficult and that injuries would occur and that pain would be a fact of life. They trained me and my siblings to work through and push past...

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...

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...

One of the lovely gifts of RA is the accompaniment of chronic pain. People with RA suffer from stiffness, swollen joints, and extreme fatigue, too, but the pain is really something special. Sometimes - much of the time for me, thankfully - it is like background noise, that muzak you hear in K-Mart but don't really listen to unless the same song plays over and over, and it's a cover of something by Michael Bolton that you really hate. Most of the time, it's a down-beat version of some easy-listening song from the late seventies that is droning and annoying but possible to ignore. Yesterday, I had one of those screaming Michael Bolton days. Words aren't enough to describe the kind of pain I had yesterday, but I'm going to take a stab at it, because hey, why not? And also because a huge part of being honest about life and about my disease is not sugarcoating anything, especially to myself. It started with a low-grade fever, as it so often does. Around 10 am, my voc...

I had my first rheumatology appointment today. I started having symptoms in July 2013, and the first blood tests that showed up positive for Rheumatoid Arthritis were performed in August. As soon as those results came back, my doctor started calling specialists to get an appointment for me. There are two practicing groups with Rheumatologists in my area, and one in the next town. The first appointment they could get was more than three months in the future. I tried calling, too, but there were no sooner appointments available. So I waited - and my condition got worse. I went from having mostly good days with some stiffness and pain to having mostly bad days with brief - sometimes only hours-long - periods of normalcy. In the interim between the first blood tests and today's appointment, I saw my general practitioner three times. Each time, she prescribed different anti-inflammatory medications which were supposed to help my symptoms and the pain. They didn't help. One of them...

Hi. My name is Amy, and I am - well, I'm lots of things. And I'm not very fond of labels. Let me just say that I'm 42 years old. I have one failed marriage under my belt, a couple of bad relationships, and one really good one, which is ongoing. I like hiking, reading, writing, and playing the bongos. Until last year, I was in reasonably good health. Then, from out of nowhere, came near-constant pain, stiffness, and exhaustion. Lots of other things were going on at the same time - grief for my father, who was recently deceased, severe work-related stress, and kidney stones. But after the work-stress eased a little and the grief mellowed just a bit, after the kidney stones had passed, I still didn't feel good. My back was agony, my hips screamed, and my knees crunched with each step. My hands, wrists, elbows, and shoulders ached constantly. And I was tired - oh so tired - I could fall asleep within minutes, no matter where I was or what I was doing. It went on this way f...