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Showing posts from 2014

It's all good

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 darknes…

The enemy

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, str…

Old Friend

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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 my pain…

Rambling

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 n…

Hangover - what to expect when you MTX

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 since m…

Moving on

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 Methotrexa…

Where were you?

It is September 11th, and the questions we inevitably hear today, as we remember the loss of nearly 3000 of our citizens in terrorist attacks thirteen years ago, are "Where were you?" and "What do you remember?"

It got me thinking. I was at work, as most of us were, on the morning of September 11th, 2001. I was in the basement of the community center where I had just been working for a couple of weeks. Some church groups had put together donations of paper towels and cleaning supplies for us and I was busy inventorying and coding the items. I was at Jubilee Project, a United Methodist Mission, and when the associate director came downstairs and told me what had happened I felt numb; frightened, saddened, and just plain cold all over. When she left the room, I approached a wooden cross that sat on a table there and I knelt down to pray. Words didn't come, but I am sure God understood my heart.

That's where I was. What I remember most from that day, and from …

Lessons

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. S…

A day in the life

Let me share with you the shape of a day since I developed this autoimmune disease:

I wake up. The room is pitch black, partially because I have purged it of all electronics including my alarm clock with a digital display, partially because I have the blinds closed, and partially because it is four a.m. and the sky hasn't begun to lighten yet. The first thing I'm aware of is the pain in my right shoulder and the inability to close or fully open the fingers of my right hand. Next I feel pain in the small of my back - this has been with me since July fifteenth; I don't think it'll be leaving me any time soon. I try a cautious stretch, and hear the succession of pops and crunches as my joints stir for the first time today.

I assess the damage. Will this be one of those days - still infrequent, thank God - when I just can't get out of bed? Will I be able to shake off the stiffness and stretch out the soreness and get to work on time? Or will it be the kind of day when …

Ego vs Empathy

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 …

I hate everything

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 losing…

Miracles

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 help…

Dealing with pain

As much better as I feel after having changed my diet and started taking anti-inflammatory supplements like turmeric and magnesium, I still have some bad days. Today is one of those. I got up feeling great this morning. Went through the house to take the dogs out for a walk. I bent down to fasten a leash onto Oskar's collar and couldn't straighten up. I threw my back out!

Well, not really. There usually isn't anything out of place when a back injury occurs. Generally, it's just a strained or pulled muscle. Then swelling occurs around the injury and that presses on the clusters of nerves that run toward the legs; it can cause pain in the hips and numbness or tingling in the feet. Minor back injuries occur for the stupidest of reasons - a sneeze, lifting something as light as a coffee pot, or just bending over to fasten a leash. You don't have to have RA to experience a back injury. I've injured my back several times in this manner - usually after having over-use…

Everything changes

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 zucchi…

I'm learning

I've always picked up new concepts and ideas really quickly. Not to brag, but learning has come easily all my life. Until it runs up against my stubbornness or a habit I really don't want to break. Like it did this weekend.

I was on vacation last week. All week long, I did really well with my anti-inflammatory food choices. I ate a lot of fresh vegetables from my garden, cherries, strawberries, raspberries, lean protein, and nuts. I avoided gluten but when I had it, I made sure it came from whole-grains and was a small amount, or I was careful to balance it with lean protein and plenty of vegetables. I felt really good all week long, so much that I was able to go on a long hike on Wednesday.

And then I got cocky. I thought it would be fine to loosen up a little on Sunday. My daughter made brownies and I am a total sucker for brownies. So I ate three. They were small but in the end, it didn't matter. I woke up at three o'clock this morning in agony from head to toe. My …

Spring cleaning

I am on vacation this week, and I guess it's perfect timing. I had a cortisone shot in my right knee on Friday of last week, and the prescription included rest, ice, compression, and elevation. At my last rheumatology appointment, I had an x-ray to diagnose the source of the pain and swelling. Back in May, I was walking and both heard and felt a pop on the inside of my knee. The x-ray couldn't pinpoint soft-tissue damage, of course, but did show considerable degeneration in the joint. So my doctor prescribed a cortisone injection and RICE. I've been doing that since Friday and have seen good improvement.

There is still some pain, but nothing like the constant throbbing I felt before. I can walk without my cane. The knee pops occasionally but it isn't bad. It helps that I don't have much of anywhere to be. I'd have preferred a more active vacation, with some hiking, biking, and maybe kayaking. I'm still planning on the kayaking, but the other two will have t…

Progress

I had the final visit with my current rheumatologist today. If you haven't been keeping up, let me recap: I started seeing this particular doctor in January. I have been unhappy with his level of involvement from almost the first visit. I decided to change doctors when my current rheumatologist took over a month to give me results of an important blood test despite my having called and left several messages. Then when I saw him again, he wanted to make important decisions about my treatment based on results that were six weeks old from a blood test that had been done only a month into the treatment plan. In March, I made an appointment with a different doctor, but because the waiting lists for specialists in this area is so long, the first appointment I could get was at the end of July.

About a month ago, I injured my right knee while walking. I heard a pop and then there was bruising and swelling. It was somewhat better in a few days, but every time I am more active - for active,…

So far, so good

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 just a…

Treatment alternatives

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 hepat…

Touch and go

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 physic…

Revisiting imperfection

Below is a post from my other blog, Today's Wilderness Journey. I wrote it in September of 2012. I happened across it today after spending time with some very dear people. We talked about some deep subjects - pain, emotional distress, and suffering - which sent me backward through my memories and turned up this bit of writing. Because I have been struggling lately with my health, my life, and my love, this spoke powerfully to me. I admit it - I hate change. After my father died, I reverted to my native mode of being, which is co-dependency, clinging, and hoarding. Not hoarding in the usual sense. Hoarding time with people I love. Hoarding life. Hoarding myself, refusing to give of who I am. It has taken losing what I held most dear to make me remember that only in releasing what we love can we actually have it. Khalil Gibran said it eloquently: Love one another, but make not a bond of love: let it rather be a moving sea between the shores of your souls. Fill each other's cup, …

Love doesn't end

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've…

I am not resigned

Tomorrow is May 31st. It will mark a year since my father died.

A year ago...can it really have been a year? Has it been more than a year since I heard his voice? Since I saw him smile? Since I held his hand while he drew his last breaths? Wiped his face as his skin cooled, watched as the nurse listened for a heartbeat that no longer echoed?

Does grief ever ease? The loss is greater now that I've had time to measure it, to consider it. To feel it. For most of my life, I believed the world would end when he died. He was the foundation of my life. He was the tree whose roots encircled the whole world. He was the shelter I sought when the storms were too frightening to bear.

Every moment without him in the world seems pointless. Tragedies are deeper. Loneliness more bitter. Sorrow more profound. How can anything happen without him? How can the sun rise? How can it set? How can the rain fall? How can I breathe?

But the sun does rise, and it sets. The clouds gather. Rain falls. And I g…