This is a Flare, Isn't It?

It may seem unlikely, but one of the problems I have with systemic lupus is that I can't always tell if I am sick. When I feel a new ache or pain, or have a day that ends in severe fatigue, or "lose" a few words in the recesses of my brain, it may simply be an ordinary day with a few inconvenient symptoms. If the symptoms persist over several days and some tell-tale iconic signs arise, I suspect it is a flare. For me those signs are painful feet, an ache in my sacroiliac joints and feeling feverish in the evening. 

Those signs are not very specific and sometimes I am still not sure if the disease is "flaring", or becoming very active. Moreover, I'm attached to my healthy time and dread being sick. 22 years of this cycle has not given me an ounce of real acceptance, only resignation and dread. Frequently this leads to some foot-dragging in acknowledging that I am sick again, and a delay starting the necessary high-dose steroids. 

Last week I noticed some symptoms, said "Here it comes," and increased my prednisone immediately. My thoughts floated above the usual anxiety and indecision. I rested when I felt the need, kept as busy as possible and focused on the coming knitting business season. Is this some kind of crazy grown-up thing? 

The coming season starts next week when I set up a display of products for sale at the new Merchants Warehouse in Chattanooga. It is home for many local makers and a few small antique sellers. It is my first opportunity in this kind of sales venue, where I rent space in a retail emporium that is open every day, staffed with lovely, welcoming people. I will be free to stay home to design and make new products, with a periodic check on my inventory. Joy! A business change that doesn't require a strong back!

Photos soon.
Peace.

WTF: In a Good Way

Honestly. Honestly! I could use another phrase here but so far I've managed to keep my blog free of some of my favorite exclamations, but some days really make you wanna say WTF. In a good way.

I burnt my turkey burger (and Lucy's, too), installed the wrong cartridges in my printer and washed my debit card today. Everything came out just fine.

Lucy and I had slightly smaller turkey burgers as I removed the ring of char for discard. She didn't seem to notice the difference, expressing her "this is the best day of my life" attitude as I fed her tiny bites. She's lost a bunch of teeth so she doesn't chew anything if she can help it, so it takes a long time to feed her a burger. A long, happy time.

I had a form to print, fill out and return for my daughter. When I finally realized that the printer was telling me it didn't recognize the cartridges I had installed, I jumped in the car and went to FedEx Kinko's, the small, friendly one near my house. A nice, patient employee kept an eye on me and helped me get past obstacles like how to insert my very clean debit card. An amazing young man refused to take the computer and scanner ahead of me, and I chatted with his mom a bit as I did my scan and email chores. When I finished I bought myself a little bag of m&ms because it was that kind of day. Then I bought one for the nice young man in case he was having that kind of day, too.

The ink cartridge store didn't have the black cartridge I needed, but the man who helped me knew right away what could substitute for it. I wanted to make a commercial for them.

Perhaps the craziest thing is that I've had wild energy all day and none of this made me feel like falling on the bed with exhaustion. It is more remarkable when you consider that my last bio-therapy treatment failed, and I have not replaced it with anything. I've been cruising along for several months on a few milligrams of prednisone a day, and if anything I feel better. Lupus is a capricious disease. I never know if I'm waking to a good day or a bad one, but I appreciate this recent string of good ones.

Peace.

Making Fun in Bad Times

Just now I wrote four paragraphs and accidentally hit an unknown key and it disappeared. That's the theme of the past two months-put in a lot of effort for nothing. I took two chemo treatments that didn't work and had side effects; I put time and attention into a man who clams up under pressure; I began exercising only to find that a flare made it impossible; I prepared a pile of beautiful baby room accessories and clothing and cannot begin the market on time (you can see examples below).

I am in limbo, fighting a flare without specific meds for it. I rarely leave the house due to pain and lack of energy and frequent infection. I can't start the market with my comrades next Sunday. I have prepared and prepared and I can't carry on until something ends this.

I'm still coming to terms with the rituximab failure. Four years ago, that medicine was like a miracle. In a lot of ways it liberated me, making me healthy enough to get out of the house, be with friends and family, build a market business instead of just existing on the internet. Now, one bad treatment cycle and my doctor has stopped it. The next medication choice leads us into uncharted territory.

Today I recognized that creeping self-pity and overwhelming sadness and chose some activities to fight it. I re-read Knit 2 Together, Patterns and Stories for Serious Knitting Fun. Tracey Ullman and Mel Clark put some unusual patterns and fun narrative together, and they seem better and more useful to me now that the first time I read it. I have lots more knitting knowledge and experience and more appreciation for elegant construction and a sense of design humor.

I also pulled out a box of Seinfeld dvds, and I'm going to work my way through several seasons. It is perfect for a knitting accompaniment. There's no action for me to look up and follow. Conversation is the whole show-what happened or didn't happen or should have happened, nothing too banal or trivial to discuss. In my family, where each one's opinion is too important to keep to oneself, this sounds very familiar, and the show makes me laugh like a crazy person.

I have a crockpot of my favorite flageolet beans. Interesting food is more important when you eat alone at home day after day. It's a cheap luxury and one of the few ways I can impact my disease right now.

I've promised myself to keep writing when things are bad. This account should always be about the totality of having this damn disease, not just the triumphal moments.

Peace.

Countdown to 2013

2013 is hours away and I am excited. The total toll of 2012 was rough, but it left me with two things: improved physical condition, and a better heart.

Back in the spring, an $11 per month gym caught my attention. Just five minutes from my house and open 24 hours per day, every day of the year, it overcame all of my barriers to exercise.  When I began I chose a few minutes on the treadmill and a few strength-building weight machines.  I gradually worked up to 20-30 minutes on either the treadmill or recumbent bike, and a regular sequence of upper and lower body weight machines. It only took a month of twice weekly visits for me to notice an increase in leg strength.  My endurance increased rapidly, too. I had to stop for a while in late summer and early fall due to a series of skin Candida infections, but I didn't lose the benefits. As I finish the year, I can climb stairs using both legs without relying on the handrail, I can go down stairs without a rail to check my balance, and I get off the floor much more easily.

This conditioning was the basis for my ability to work more frequently at the market. It takes strength and endurance to load and unload, set up and take down all the equipment to make my store each week. In the past I could only do it with a significant amount of help. Now I can go to market alone and handle all my equipment, and a day of working in my store doesn't make me take to my bed for the next three days.

It still remains that my illness can crop up at any minute and change my plans and keep me down for weeks, but it doesn't deplete my strength to the point that I must start from scratch and feel so disabled for so long.

The other benefits are probably obvious - I can get out more with friends, do household chores and run errands, and the additional strength is a confidence builder.

This other thing-the better heart-is a trickier concept. First, let me say that I don't believe that "What does not kill me, makes me stronger".  I don't know what Nietzsche was talking about, but I rarely see anyone who damn near died feeling stronger, at least not for a long time. So I don't mean that the crap we were mired in this year left me a stronger person. Instead, the ring of loving people around me helped to protect me from the pervasive crap, and with that protection, I was allowed to grow and do some good and not sink into the mire. Having that special ring of friends and family is a palpable thing for me-in my mind I can feel their love and support, and I know they wish me well. They buoy my daughter and me, share their own strength and heart, so I am not depleted. God is also there, making us all better than the molecules that form our flesh. She infuses us with the desire to stay alive and make life count, to stay connected and be part of that caring circle, feeling and supporting and giving, communing, and altogether radiating something lighter and better.

2013 is for that lighter, better thing. Peace.

December 26

Day after Christmas. In my mental barometer yesterday ranks as good, low pressure. That figures large in the way I'm spending today. I had dessert for breakfast, another dessert for lunch, a long nap in between. I'm not rushing to see anyone that I missed yesterday, nor am I hustling to get to knitting group. My daughter is with me, we're watching King Kong, there's peace in the house.

I think I've perfected the dessert-for-meal thing. I used to conscientiously eat a meal in order to get the desired dessert, netting twice the calories (or more). Now I eat what I want and stop there. If the desire is for something other than dessert, the principle still applies: eat the dressing, leave the turkey and greens and corn. It's a strategy.

Yesterday I saw my little old parents. This is their first Christmas with both of them in their nineties, and my sister had made it perfect for them. They sat in their living room, surrounded by piles of gifts, both wearing festive touches supplied by my sister - a light-up necklace for Daddy, a red flowered headband for my mom. They were delighted by their special day, the visitors, the love from family. I made a short video to preserve the happy time.

I cooked and entertained more this holiday than in the past five or eight years. I stopped for rest when I needed it, then resumed my activity. I am incorporating my ten minutes of biking each day without undue strain. This morning I felt the pain of achy foot pads and the difficulty of motivating myself to action. I stopped to think about it for just a minute. I have so much to get up for, so many reasons to keep moving, it has become automatic. I don't have to stop and brace myself before putting my feet on the floor. Forward, forward.

Peace. Happy holidays.

Prednisone Blindside Response

I have been perplexed. The past few weeks I've noticed increased appetite and disrupted sleep. Increased appetite is an understatement. I've been ravenous. My usual lay down, close eyes, and fall asleep routine has been failing, and I awaken in the early morning, hungry and unable to return to sleep. I blamed it all on the extraordinary circumstances of my packing and moving, the excitement of house sale and new house. Tonight I it all came to a head. I was upset at my hungriness and the way it prevented sleep, and beginning to despair of having any improved health from my increased activity if all it meant was more appetite. As I bit into my low-cal, high-fiber, whole grain English muffin it hit me - my steroid dose is up. This is a sneaky steroid increase. I'm not taking a higher dose of prednisone. My oral dose remains at its baseline, not enough to cause these symptoms. However, almost three weeks ago I had a joint injection - a large dose of steroid (corticosteroid) medication was inserted directly into my left knee joint to treat an acute flare. We do this kind of treatment to put the medication directly where it is needed and to minimize the systemic affect of the meds, but a goodly portion is still absorbed into the bloodstream and disseminated to the rest of the body.

I am greatly relieved to realize the source of my symptoms. I've had such an increase in activity that I'm hoping to see better overall health. I thought it was being thwarted by my need to eat more, but now I know it is temporary. Moreover, having insomnia and being on an irregular schedule has never been good for my lupus. Keeping the wolf under control is much easier with adequate rest and a predictable meal, sleep and medication schedule. I should be close to getting over the steroid symptoms. One way I've been fighting them is to feed my appetite with huge amounts of plain steamed vegetables. My Publix had a $1 sale on microwavable vegetable packs, found in the produce section. I scooped up a pile and I indulge in them liberally. I also invested in several cases of my favorite sparkling water (yes, at $4 for 12 cans, it's an investment), and I fill up on bubbles.

A disease that has affected you for 17 years isn't going to be controlled or conquered overnight. I'm happy for every little insight that helps me manage better, even if it comes at 3 a.m.

Peace.