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Showing posts from April, 2014

The courage to risk your heart

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 mower ma…

The rest of it can wait

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 th…

Sleepless

I went to bed at nine o'clock on Sunday night. It is now Monday morning - 3:55 am right at this moment - and I have been awake since six minutes past midnight. The alarm will ring at 6:05. I keep telling myself that if I can just get to sleep now, I can still get two hours.

I am so tired that I can barely keep my eyes open. But I have been lying here in bed for four hours with my eyes closed, trying to sleep, to no avail. My body is begging for sleep but my mind just won't turn off. And it's a vicious circle, the way it feeds itself; the more tired I am, the more pain I have. The more I hurt, the more my mind races. I have taken 15 mg of melatonin over the course of the past three hours, but it hasn't helped. It usually only takes 5 mg to buy a night's sleep.

So I'm awake. At three o'clock, I gave up and started reading. The words blurred together and I couldn't focus. Finally I turned on Netflix. Now reruns of The Walking Dead are on in the background.…

Best laid plans

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 went ba…

Breathe

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 tenabl…

Finding my way

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 doe…

A shot in the back

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 exp…