Out of the Blue

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...

What's past is prologue. ~ William Shakespeare "When lo, as they reached the mountain-side, a wondrous portal opened wide, as if a cavern suddenly hollowed; the Piper advanced and the children followed..." ~ Robert Browning Like most people, I use social media to express who I am, share what interests me, and stay in touch with people who matter to me. Lately, I have been scolded, manipulated, and mocked for my stance on politics, immediately followed by people insisting that I need to get with the program and support the incoming administration, because that is my duty as an American. Yesterday, a friend posted a request that people unite behind our leadership, regardless of how we voted, because we need to "come together" as a country and heal the divisions that have plagued us. I understand the request and what motivated it. Like most of us, she wants people to get along. She is tired of the fighting and is dismayed by what she sees around her. I get 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...

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...

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...

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 ...

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...