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.
Showing posts with label lupus flare. Show all posts
Showing posts with label lupus flare. Show all posts
Monday, August 26, 2013
Thursday, June 2, 2011
Preparing to Have a Flare
I've had a backache for a few days. I've set up for the Chattanooga Market twice this month, and gone to a smaller farmer's market once. I figured the pain was from hauling stuff and bending, sitting in an uncomfortable chair, etc. This morning I woke myself up singing the pain song. What I mean is that I was whimpering in my sleep because my body hurt, and the noise woke me. I could see right away that I was in trouble. I got up and began walking and my thighs were stiff. It felt like I was expending major energy to make my legs move. There were annoying little shooting pains in my lower legs even when I sat. This is a flare until proven otherwise.
Obviously I can't prepare for something that begins so precipitously, but I've got some moves for when I recognize the inevitability of the flare. First, I put in a call to my rheumatologist. It's Thursday and I don't want to get caught out on the weekend trying to reach someone. Might as well get some instructions now. Second, I look at my schedule. For the next few weeks I need to determine what is absolutely essential, and cancel everything else. I will need the extra rest and I'm probably going to lack the energy or good will to do more. Third, I rally my moral support. Telling one or two sisters, my daughter, and a few good friends alerts everyone that I may need a bit of help, if only an ear for my complaining. It also lets them know that I'm not turning down activities with them because I've suddenly developed an aversion to their company. Fourth, I start recording my food intake. If I'm going on a higher dose of prednisone it is going to drastically increase my appetite. I need to monitor what I eat and make sure I stay on program. It will be especially difficult with the low carbohydrate plan my new internist wants me to try, as prednisone makes me crave baked goods and other carbs in a remarkable way.
Since my usual day is built around my crafting, specifically knitting and crochet, I don't have to change my basic purpose. I still want to get up in the morning, see what I can learn (reading or on the Internet), do maintenance on my stores, and then work on projects. The flare will put a kink in my ability and energy for photography, so I try and do it in short sessions at the times when my energy is best.
I sat down to record this plan so that I would stop obsessing with what this flare might mean. Yes, it might be a three-month disaster, but it also might respond to steroids right away and be a non-issue in three weeks. Yes, it is going to bring more pain, but my pain tolerance is high and my distraction skills have stood me well. Yes, there's going to be some disappointment in having to give up some activities and adjust my thinking to active illness mode, but that's happened dozens-hell, in 20 years, maybe hundreds-of times and it eventually passes.
Damn. My wrists hurt.
Peace.
Obviously I can't prepare for something that begins so precipitously, but I've got some moves for when I recognize the inevitability of the flare. First, I put in a call to my rheumatologist. It's Thursday and I don't want to get caught out on the weekend trying to reach someone. Might as well get some instructions now. Second, I look at my schedule. For the next few weeks I need to determine what is absolutely essential, and cancel everything else. I will need the extra rest and I'm probably going to lack the energy or good will to do more. Third, I rally my moral support. Telling one or two sisters, my daughter, and a few good friends alerts everyone that I may need a bit of help, if only an ear for my complaining. It also lets them know that I'm not turning down activities with them because I've suddenly developed an aversion to their company. Fourth, I start recording my food intake. If I'm going on a higher dose of prednisone it is going to drastically increase my appetite. I need to monitor what I eat and make sure I stay on program. It will be especially difficult with the low carbohydrate plan my new internist wants me to try, as prednisone makes me crave baked goods and other carbs in a remarkable way.
Since my usual day is built around my crafting, specifically knitting and crochet, I don't have to change my basic purpose. I still want to get up in the morning, see what I can learn (reading or on the Internet), do maintenance on my stores, and then work on projects. The flare will put a kink in my ability and energy for photography, so I try and do it in short sessions at the times when my energy is best.
I sat down to record this plan so that I would stop obsessing with what this flare might mean. Yes, it might be a three-month disaster, but it also might respond to steroids right away and be a non-issue in three weeks. Yes, it is going to bring more pain, but my pain tolerance is high and my distraction skills have stood me well. Yes, there's going to be some disappointment in having to give up some activities and adjust my thinking to active illness mode, but that's happened dozens-hell, in 20 years, maybe hundreds-of times and it eventually passes.
Damn. My wrists hurt.
Peace.
Tuesday, February 22, 2011
This is What Better Feels Like
I think I've described what it's like when I am sick or in a lupus flare. I was treated twice in the past two weeks with a very specific therapy that targets B cells from my immune system. (Those are cells that contribute to lupus, which comes from an overactive immune system.) I tried to pay special attention to what is better now that I've been treated.
Within three days of the first dose, my joint pain improved and my energy increased. At the end of that week I was able to take my first decrease in prednisone dosage. By ten days post-treatment, I was using approximately half the pain medicine as before. In the past week I've done house cleaning and grocery shopping much more easily. I walk faster and I can go to more than one store when necessary. This week I decreased my prednisone again, and with no rebound of symptoms. When I woke this morning I realized that-once again-I can start my day with no pain.
There are a few foundations that help patients like me pay for this treatment. Without their help, my out-of-pocket expense would be more than $8000 per year, impossible for me and my post-recession economitis. Medicare only covers a fraction of the cost. It's a frustrating situation, as my being free of flares means less other medication has to be subsidized by Medicare, my need for expensive physical therapy is reduced, I can care for myself independently in my home, and I have less possibility of side effects from prednisone, which can cause expensive chronic diseases like diabetes and osteoporosis and cardiac disease.
People think of preventive medicine as being about physical exams, vaccines, cholesterol screening, mammograms, Pap smears...For me, prevention is about minimizing the debilitating effects of lupus and of the treatments for lupus. Both kinds of prevention are good for the country's annual health care expenditures.
On the knitting front: Lately I have been consumed with ideas about nontraditional design. I'm trying to throw away some conventions and produce pieces that are more sculptural and texture-driven. I'll get some photos this week and post them.
Peace! All power to the Wisconsin workers!
Within three days of the first dose, my joint pain improved and my energy increased. At the end of that week I was able to take my first decrease in prednisone dosage. By ten days post-treatment, I was using approximately half the pain medicine as before. In the past week I've done house cleaning and grocery shopping much more easily. I walk faster and I can go to more than one store when necessary. This week I decreased my prednisone again, and with no rebound of symptoms. When I woke this morning I realized that-once again-I can start my day with no pain.
There are a few foundations that help patients like me pay for this treatment. Without their help, my out-of-pocket expense would be more than $8000 per year, impossible for me and my post-recession economitis. Medicare only covers a fraction of the cost. It's a frustrating situation, as my being free of flares means less other medication has to be subsidized by Medicare, my need for expensive physical therapy is reduced, I can care for myself independently in my home, and I have less possibility of side effects from prednisone, which can cause expensive chronic diseases like diabetes and osteoporosis and cardiac disease.
People think of preventive medicine as being about physical exams, vaccines, cholesterol screening, mammograms, Pap smears...For me, prevention is about minimizing the debilitating effects of lupus and of the treatments for lupus. Both kinds of prevention are good for the country's annual health care expenditures.
On the knitting front: Lately I have been consumed with ideas about nontraditional design. I'm trying to throw away some conventions and produce pieces that are more sculptural and texture-driven. I'll get some photos this week and post them.
Peace! All power to the Wisconsin workers!
Saturday, February 5, 2011
Weathering the Flare II
A few days ago I wrote Weathering the Flare, and I made an inadvertent omission. Somehow I forgot to mention the instant pick-me-up. One of the worst feelings when you are dealing with the flares your illness metes out is helplessness. When I don't feel useful, it's hard for me to relate to the world, to find my place in it. I know intellectually that I have value beyond my ability to give, but it drains my confidence and self-worth none the less when I cannot do it. A quick, almost effortless move can fix that. I turn on my laptop and navigate to The Hunger Site. In one minute I can click on all the contribution buttons (Hunger, Breast Cancer, Animal Rescue, Rain Forest, Literacy, Child Health) and sponsors will make small donations to each cause. Instantly I feel the satisfaction of having done my piece to save the world that day. The best thing is that my chronic poverty doesn't stop me from doing my part, either. I just have to pay attention for a minute.
Second in line, and requiring a bit more stamina, is to use my telephone to pick up someone else's spirits. I've noticed that fewer people are using their phones for encouragement and contact. The sound of a human voice is infinitely more comfortable than the buzz of your phone, followed by a two-line text message. Granted, you can text or email in the thick of your busy day when a call would be impossible, but many have convinced themselves that a call is never possible. We need to re-learn the art of the quick, "I'm just checking on you" phone call, and use it frequently. I know this approach requires a little more stamina than clicking on the Hunger Site button, but the extra effort brings a proportionate swell in my sense of having touched another human being and lifted their day. I try never to use this on annoying people who are a drag on my day; those individuals need only be dealt with when I have extra energy and the right frame of mind. Instead, I pick as my target someone who isn't expecting the call and won't abuse it.
It is important to me that my effort have tangible rewards. I don't spend a lot of time throwing prayers up for other people, since they always generate uncertainty of being heard or answered. That's just more stress. Instead, I go for the direct hit of sending cash via sponsors or sending good will by way of a phone call, and I can be sure of my result. Good ol' useful me, saving the world on a daily basis.
Peace.
Second in line, and requiring a bit more stamina, is to use my telephone to pick up someone else's spirits. I've noticed that fewer people are using their phones for encouragement and contact. The sound of a human voice is infinitely more comfortable than the buzz of your phone, followed by a two-line text message. Granted, you can text or email in the thick of your busy day when a call would be impossible, but many have convinced themselves that a call is never possible. We need to re-learn the art of the quick, "I'm just checking on you" phone call, and use it frequently. I know this approach requires a little more stamina than clicking on the Hunger Site button, but the extra effort brings a proportionate swell in my sense of having touched another human being and lifted their day. I try never to use this on annoying people who are a drag on my day; those individuals need only be dealt with when I have extra energy and the right frame of mind. Instead, I pick as my target someone who isn't expecting the call and won't abuse it.
It is important to me that my effort have tangible rewards. I don't spend a lot of time throwing prayers up for other people, since they always generate uncertainty of being heard or answered. That's just more stress. Instead, I go for the direct hit of sending cash via sponsors or sending good will by way of a phone call, and I can be sure of my result. Good ol' useful me, saving the world on a daily basis.
Peace.
Sunday, January 30, 2011
Sick and Angry...and Sick
Every part of me hurts. It was torture getting out of bed and back in this morning. My hands are stiff and my fingers ache. Yesterday I ran out of steam in the old way, finding myself only able to sit and look. I have been on increased doses of prednisone for two months with no relief from this flare. This is how it used to be, the long flares I was accustomed to before I started taking rituximab.
When I began rituximab, we quickly determined that six month intervals between treatments allowed my flares to recur. My treatments were scheduled for every three to four months, and I had some blissfully better years. I was making progress with my life, enjoying some social activities, working much more capably in my home. I could see this concretely in better meal preparation, housekeeping and mental function. Then my rheumatologist decided that every six months was better for me. My last treatment was August. I am an angry mess. I don't know why I had to go through this again. Frankly, if there are long-term consequences to taking this medication more frequently, I am willing to trade them for the short-term life that it brings me.
I saw my psych guy this week. I can't call him a therapist. He is a drug manager. He gets a 30-minute update every three months and decides of my medications should be changed. No therapy involved. I realized after the visit that I must have sounded angry about everything - my health, my finances, my family, politics, injustices my daughter has recently suffered at school. I was a smiling, angry person.
I think what I was feeling was impotence. I am sick and I know it could have been avoided and I can't make the decisions that control that. I am in the typical patient position of being afraid to contradict the doctor too strongly, for fear that I will never get what I want and need. I need to be "good" and let him do his six-month experiment, and then be grateful that I am finally at the end of it this week. This sucks.
I have seen other patients in this position, and I encouraged them to go shopping. I may need to do the same. I have pushed others to treat the medical office like they treat a grocery store - if you feel that you are being mistreated, if your needs are not being met, if your questions are not answered - try somewhere else. Now I am looking at it with limited financial resources and the insurance least desired in physician offices, and trying to decide if I should do the same. I will speak to my doc first. We've always had good rapport, and I think a conversation is preferable to defecting without warning. I hope I won't have to shop. But I can't endure this again.
Peace.
When I began rituximab, we quickly determined that six month intervals between treatments allowed my flares to recur. My treatments were scheduled for every three to four months, and I had some blissfully better years. I was making progress with my life, enjoying some social activities, working much more capably in my home. I could see this concretely in better meal preparation, housekeeping and mental function. Then my rheumatologist decided that every six months was better for me. My last treatment was August. I am an angry mess. I don't know why I had to go through this again. Frankly, if there are long-term consequences to taking this medication more frequently, I am willing to trade them for the short-term life that it brings me.
I saw my psych guy this week. I can't call him a therapist. He is a drug manager. He gets a 30-minute update every three months and decides of my medications should be changed. No therapy involved. I realized after the visit that I must have sounded angry about everything - my health, my finances, my family, politics, injustices my daughter has recently suffered at school. I was a smiling, angry person.
I think what I was feeling was impotence. I am sick and I know it could have been avoided and I can't make the decisions that control that. I am in the typical patient position of being afraid to contradict the doctor too strongly, for fear that I will never get what I want and need. I need to be "good" and let him do his six-month experiment, and then be grateful that I am finally at the end of it this week. This sucks.
I have seen other patients in this position, and I encouraged them to go shopping. I may need to do the same. I have pushed others to treat the medical office like they treat a grocery store - if you feel that you are being mistreated, if your needs are not being met, if your questions are not answered - try somewhere else. Now I am looking at it with limited financial resources and the insurance least desired in physician offices, and trying to decide if I should do the same. I will speak to my doc first. We've always had good rapport, and I think a conversation is preferable to defecting without warning. I hope I won't have to shop. But I can't endure this again.
Peace.
Friday, March 19, 2010
Meanwhile, Back at the Ranch...
I'm separating my lupus woes from my afghan series so I can concentrate fully on getting good pattern instructions out for the latter. I'm suffering on the former front, and I can't wait to be better. I have pain in several joints, including the metacarpal-phalangeal joints of my hands (where the fingers meet the palm). Those joints are swollen and tender and a bit reddened, looking like the rheumatoid arthritis joints that they are. My mom's hands looked like this before they took on the typical RA deformities. My knees ache and have sharp pains at unpredictable times like the lupus joints that they are. My sacroiliac joints are incredibly inflammed, so walking and standing is torture. Meds only partially suppress any of this, so I am a cranky hurting person.
I'm finally allowed to return to my rituximab therapy, and I had one IV session yesterday, to be repeated in two weeks. Oh joy. Seriously. I'm happy, just don't feel like smiling right this minute.
I've continued knitting during this flare (surprise!). I have my mind on completing custom orders and preparing for the Chattanooga Market. That means I'm knitting a wool hat and scarf, a custom afghan, and cute little summer hats at the same time. Must look a little schizophrenic from the outside. Right now I'm focused on spring/summer items for the Market, so the striped hats are a major step in that direction. They are knit in elann.com Esprit, 98.3% cotton/1.7% elastic, an easy care comfy yarn that knits well. It's identical to Cascade Fixation which gives me an expanded color range if I need it. I'd love to offer some little sleeveless pullovers for kids in the same yarn. We'll see. My colors were chosen by a kind of rigid formula of my own making. It has pushed me into some nice color combos that are new for me. I made each color combo in at least one adult and one child's size, so one can choose to match their offspring. They are simple enough that I'm willing to make more custom sizes if needed.
Peace.
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