Tuesday, May 12, 2009
Super cool giveaway!
Please go here for a chance to win some beautiful jewelry on behalf of a great cause!!!
Tuesday, February 17, 2009
Living with a cluster of auto-immune disorders
Peak symptoms:
Iritis:
My right eye had severe pain with any sunlight or strong light. The pain was in the eye itself, and then in the tissues surrounding the eye, from having to blink a lot and close my eye for direct light. The left eye began having pain as time went on because it had to compensate for the right eye so much. My face hurt a lot.
With the cyclopentate, my eye was dilated to keep the eye from scarring. This made it hard to focus on close-up work, made it difficult to actually read. I'm lucky that I have excellent symbol-interpreting skills, so I could "guess" correctly at what was on the page. But it exhausted me. Driving was also a challenge. But I did it, and I have a very good knack for being careful and interpreting the symbols in the traffic, so even though my eyes were not focusing together, I could figure out what was going on. But it gave me headaches. And the bright light of the setting sun after work really made my eye twinge and water.
Driving at night was virtually impossible, because of the dilation: eyes use light to gauge shape and distance, right? Well, with the dilated right eye, all the light came straight in and there was no depth perception. Especially at night. So I'd be driving to the store for something (just around the block, thankfully), but I couldn't tell how FAR the headlights were from me. I literally couldn't SEE that. I couldn't interpret distance. So I began counting. I would count tiny moments and with that, I could create an artificial frame of reference with which I could guess how far the other cars were and how fast they were moving, because I couldn't tell with my eyes any of that. It was scary, but I managed to make it work. It was very exhausting.
And to top that off, I looked funny. My right eye was often red from the constant drops, and the pupil was very large. I was thinking about going for job interviews, but I was sure they wouldn't understand about my dilated pupil and red rimmed right eye.
Medication: The prednisolone drops taste like bitter lettuce. I can taste it down the back of my throat, on the back of my tongue. They also make me feel very isolated from mankind. It's like I'm in a transparent latex bubble. I feel muted, like an emotionless shell. I also feel like people don't understand me while I'm taking the drop. I took it once an hour while awake (14-16 drops per day) for 1-2 weeks, then tapered down to 8 times a day, 7, 6, 5, 4, and then I stopped of my own volition because I could tell that the swelling was all gone. I've done this so many times that it's so familiar, the symptoms and the cessation of symptoms.
The prednisolone pill made all my swelling go away. I was having swelling in my ankles, knees, back, sternum, hips, and I was starting to get joint pain in my hands. I'm a musician, so that was utterly scary to me. But the oral prednisolone took away all swelling. The only side effects I had were increased metabolism (I already have a killer metabolism), I was hungry ALL THE TIME, and I had VERY VIVID dreams, some of them scary. It kept me from sleeping soundly at night when I was on the 40mg dose. But it made all my pain/symptoms go away.
I was on 40mg for one week, then 30 mg, then 20, then 10, then 5, then none.
Colitis:
Whenever I traveled, I got diarrhea. I also struggled with what I thought was lactose intolerance. But when I take Humira, I don't have any trouble digesting lactose.
I never thought that my "lactose intolerance" would have more to do with colitis than with lactose.
Lactose intolerance symptoms:
I would have very bad diarrhea, and I would feel "hungover" the next morning, very dehydrated and I would have trouble moving. When I ate a lot of ice cream and pizza, my tummy would hurt, and I would get very fatigued and start to go to sleep, and I would wake up with intense pain in my abdomen, and I wouldn't be able to walk very well for 30 minutes or so.
Ankylosing spondylitis symptoms:
I began having back pain back in 2005. I thought it was because I had a back injury- I hit my back on a loft while I was standing on a futon in college. My vertebrae T5-T9 were "out", and then I got really bad hip pain. I did physical therapy for 6 months, and then they let me go because I was "getting better" -- but I had all kinds of pain when I tried to sleep, and I used to be a really fast walker, but I had to stop because of my back pain. I still don't walk really fast.
I had to take 800mg of ibuprofen every 8 hours in order to survive life. I would wake up in the middle of the night, every night, in pain, and I'd have to take ibuprofen and still wouldn't sleep really well. I took the daily 2400mg of ibuprofen for 12-14 months, until I got on Humira.
Another thing about the pain: the more stress I'm under, the worse my pain will be. If my mood is bad, the pain is worse.
This latest episode of back pain started back in October 2007. I was having lots of pain at night, and for my job I was lifting 30 lb string basses all day. I was sure the pain would go away, so I did the stretches I learned from my '05 therapy, and didn't want to bother anyone with my back pain. I finally went to the doctor in March of '08, and I got physical therapy, but the effects didn't last. I would get better "in session", and then I'd wake up the next morning with pain. I also discovered that playing the bass made my back hurt more. My job entailed lifting basses and playing them to ensure they were adjusted properly. So my work worsened the situation.
I was released from physical therapy May of '08. My symptoms still weren't much better, but I was "getting better." My spine wouldn't "flex" the way it should, and I was having a lot of pain sleeping at night.
My maternal grandfather passed away Aug 24, 2008. I got on a plane that weekend and I got diarrhea really badly, which I know now was my colitis acting up. I stayed with my sister Natalie and her brand-new husband Michael for most of the three-day event, but the last night I stayed with my sister Nichole and her husband Jeff. They said some things that really upset me, and I got iritis the next day on the plane. I was sure it was nothing, though, maybe pink eye... but the next morning I couldn't see very well out my right eye. I went to the Ann Arbor Kellogg Eye Center Urgent Care, and they had the sense to get me tested for HLA-B27. I've had iritis 3 times previously in my life, once in 1998 (left eye), 1999 (right eye), and again in 2001 (left eye). In all 3 cases they started with prenisolone eye drops, then after a month of no improvement, I was given a prednisolone injection in the eye, which stopped the symptoms.
By this point, my ankles had swollen, and both knees, so it was hard to walk. I'd been to the doctor twice for this but they couldn't tell me what was wrong. It was actually the tissue connecting to the joints, not the joints themselves, so it was very confusing.
Peak AS symptoms: I couldn't bend down to pet the cat. She would greet me every morning when I left the bedroom, and she'd roll on the floor so I could pet her tummy-- but when I was having flares, I physically could not touch my toes without severe pain. I couldn't twist from side to side, I would have trouble laughing because all the spots where my ribs meet my sternum were inflamed, so it hurt to laugh. When I was in physical therapy, my physical therapist told me that my ribs were supposed to "roll" as I bent over. They weren't moving, so I was in extreme pain in my chest/back all the time. The ribs were locked in the position they are in when you are sitting upright, and when I would bend forward, they would stay in that position, which was VERY painful. Sometimes I would have trouble breathing, just asthma-like symptoms that worsened at night when the pain was worse. It felt like I couldn't take deep breaths, and if I started coughing, I would have trouble stopping coughing because I felt out of breath.
It hurt to walk. I had trouble walking up and down stairs, because my knees hurt so badly. The funny thing was, if I walked for hours, it would hurt while I was walking, but I would be in less pain later on, probably because of increased blood flow and some increased joint mobility.
My hands hurt. It felt like a searing, white hot pain in all my joints. This pain depressed me and made it hard for me to focus on anything. I would sit for hours, not really doing anything, but not wanting to move because of all the pain in my joints. The one thing that stopped my hand pain temporarily was washing dishes. The hot water and joint movement helped take the pain away for a while.
It hurt to lift things, because every joint ached, and my spine wasn't moving, so all the weight wasn't being distributed properly.
Symptom-free living:
I can bend down and pet the kitty. I can do housework without having pain. I can play the bass without pain. I can lift things and not ache for days afterward. I can sleep without chest/back pain. I can get up out of bed without pain. I can sit on the floor without fear of not being able to get back up. I can go to almost any position, lying down, etc, without fear of not being able to get up without help.
I don't have to worry about not being able to see, either up close or driving. I don't have to worry so much about what I eat, because on Humira, lactose doesn't give me symptoms.
Iritis:
My right eye had severe pain with any sunlight or strong light. The pain was in the eye itself, and then in the tissues surrounding the eye, from having to blink a lot and close my eye for direct light. The left eye began having pain as time went on because it had to compensate for the right eye so much. My face hurt a lot.
With the cyclopentate, my eye was dilated to keep the eye from scarring. This made it hard to focus on close-up work, made it difficult to actually read. I'm lucky that I have excellent symbol-interpreting skills, so I could "guess" correctly at what was on the page. But it exhausted me. Driving was also a challenge. But I did it, and I have a very good knack for being careful and interpreting the symbols in the traffic, so even though my eyes were not focusing together, I could figure out what was going on. But it gave me headaches. And the bright light of the setting sun after work really made my eye twinge and water.
Driving at night was virtually impossible, because of the dilation: eyes use light to gauge shape and distance, right? Well, with the dilated right eye, all the light came straight in and there was no depth perception. Especially at night. So I'd be driving to the store for something (just around the block, thankfully), but I couldn't tell how FAR the headlights were from me. I literally couldn't SEE that. I couldn't interpret distance. So I began counting. I would count tiny moments and with that, I could create an artificial frame of reference with which I could guess how far the other cars were and how fast they were moving, because I couldn't tell with my eyes any of that. It was scary, but I managed to make it work. It was very exhausting.
And to top that off, I looked funny. My right eye was often red from the constant drops, and the pupil was very large. I was thinking about going for job interviews, but I was sure they wouldn't understand about my dilated pupil and red rimmed right eye.
Medication: The prednisolone drops taste like bitter lettuce. I can taste it down the back of my throat, on the back of my tongue. They also make me feel very isolated from mankind. It's like I'm in a transparent latex bubble. I feel muted, like an emotionless shell. I also feel like people don't understand me while I'm taking the drop. I took it once an hour while awake (14-16 drops per day) for 1-2 weeks, then tapered down to 8 times a day, 7, 6, 5, 4, and then I stopped of my own volition because I could tell that the swelling was all gone. I've done this so many times that it's so familiar, the symptoms and the cessation of symptoms.
The prednisolone pill made all my swelling go away. I was having swelling in my ankles, knees, back, sternum, hips, and I was starting to get joint pain in my hands. I'm a musician, so that was utterly scary to me. But the oral prednisolone took away all swelling. The only side effects I had were increased metabolism (I already have a killer metabolism), I was hungry ALL THE TIME, and I had VERY VIVID dreams, some of them scary. It kept me from sleeping soundly at night when I was on the 40mg dose. But it made all my pain/symptoms go away.
I was on 40mg for one week, then 30 mg, then 20, then 10, then 5, then none.
Colitis:
Whenever I traveled, I got diarrhea. I also struggled with what I thought was lactose intolerance. But when I take Humira, I don't have any trouble digesting lactose.
I never thought that my "lactose intolerance" would have more to do with colitis than with lactose.
Lactose intolerance symptoms:
I would have very bad diarrhea, and I would feel "hungover" the next morning, very dehydrated and I would have trouble moving. When I ate a lot of ice cream and pizza, my tummy would hurt, and I would get very fatigued and start to go to sleep, and I would wake up with intense pain in my abdomen, and I wouldn't be able to walk very well for 30 minutes or so.
Ankylosing spondylitis symptoms:
I began having back pain back in 2005. I thought it was because I had a back injury- I hit my back on a loft while I was standing on a futon in college. My vertebrae T5-T9 were "out", and then I got really bad hip pain. I did physical therapy for 6 months, and then they let me go because I was "getting better" -- but I had all kinds of pain when I tried to sleep, and I used to be a really fast walker, but I had to stop because of my back pain. I still don't walk really fast.
I had to take 800mg of ibuprofen every 8 hours in order to survive life. I would wake up in the middle of the night, every night, in pain, and I'd have to take ibuprofen and still wouldn't sleep really well. I took the daily 2400mg of ibuprofen for 12-14 months, until I got on Humira.
Another thing about the pain: the more stress I'm under, the worse my pain will be. If my mood is bad, the pain is worse.
This latest episode of back pain started back in October 2007. I was having lots of pain at night, and for my job I was lifting 30 lb string basses all day. I was sure the pain would go away, so I did the stretches I learned from my '05 therapy, and didn't want to bother anyone with my back pain. I finally went to the doctor in March of '08, and I got physical therapy, but the effects didn't last. I would get better "in session", and then I'd wake up the next morning with pain. I also discovered that playing the bass made my back hurt more. My job entailed lifting basses and playing them to ensure they were adjusted properly. So my work worsened the situation.
I was released from physical therapy May of '08. My symptoms still weren't much better, but I was "getting better." My spine wouldn't "flex" the way it should, and I was having a lot of pain sleeping at night.
My maternal grandfather passed away Aug 24, 2008. I got on a plane that weekend and I got diarrhea really badly, which I know now was my colitis acting up. I stayed with my sister Natalie and her brand-new husband Michael for most of the three-day event, but the last night I stayed with my sister Nichole and her husband Jeff. They said some things that really upset me, and I got iritis the next day on the plane. I was sure it was nothing, though, maybe pink eye... but the next morning I couldn't see very well out my right eye. I went to the Ann Arbor Kellogg Eye Center Urgent Care, and they had the sense to get me tested for HLA-B27. I've had iritis 3 times previously in my life, once in 1998 (left eye), 1999 (right eye), and again in 2001 (left eye). In all 3 cases they started with prenisolone eye drops, then after a month of no improvement, I was given a prednisolone injection in the eye, which stopped the symptoms.
By this point, my ankles had swollen, and both knees, so it was hard to walk. I'd been to the doctor twice for this but they couldn't tell me what was wrong. It was actually the tissue connecting to the joints, not the joints themselves, so it was very confusing.
Peak AS symptoms: I couldn't bend down to pet the cat. She would greet me every morning when I left the bedroom, and she'd roll on the floor so I could pet her tummy-- but when I was having flares, I physically could not touch my toes without severe pain. I couldn't twist from side to side, I would have trouble laughing because all the spots where my ribs meet my sternum were inflamed, so it hurt to laugh. When I was in physical therapy, my physical therapist told me that my ribs were supposed to "roll" as I bent over. They weren't moving, so I was in extreme pain in my chest/back all the time. The ribs were locked in the position they are in when you are sitting upright, and when I would bend forward, they would stay in that position, which was VERY painful. Sometimes I would have trouble breathing, just asthma-like symptoms that worsened at night when the pain was worse. It felt like I couldn't take deep breaths, and if I started coughing, I would have trouble stopping coughing because I felt out of breath.
It hurt to walk. I had trouble walking up and down stairs, because my knees hurt so badly. The funny thing was, if I walked for hours, it would hurt while I was walking, but I would be in less pain later on, probably because of increased blood flow and some increased joint mobility.
My hands hurt. It felt like a searing, white hot pain in all my joints. This pain depressed me and made it hard for me to focus on anything. I would sit for hours, not really doing anything, but not wanting to move because of all the pain in my joints. The one thing that stopped my hand pain temporarily was washing dishes. The hot water and joint movement helped take the pain away for a while.
It hurt to lift things, because every joint ached, and my spine wasn't moving, so all the weight wasn't being distributed properly.
Symptom-free living:
I can bend down and pet the kitty. I can do housework without having pain. I can play the bass without pain. I can lift things and not ache for days afterward. I can sleep without chest/back pain. I can get up out of bed without pain. I can sit on the floor without fear of not being able to get back up. I can go to almost any position, lying down, etc, without fear of not being able to get up without help.
I don't have to worry about not being able to see, either up close or driving. I don't have to worry so much about what I eat, because on Humira, lactose doesn't give me symptoms.
Monday, February 2, 2009
Flex those teaching muscles.
I have two new classes starting next week, a group of 3 young ones (two girls, one boy, one of the girls plays cello, others: violin), all 6-8 years of age. So it's a true beginner class, and the music will be appropriately chosen. The focus will be on motor skills first, reading second.
The other group is 4 pre-teens (3 girls, one boy, one of the girls plays viola, others: violin), all 11-13 years of age. The focus will be on posture, of course, but with a strong reading element, and they will have learned 4-5 mildly complex pieces by the end of their time.
I have a few private music students, and those lessons are truly a joy as well-- I love watching people grow and learn, and I love being the one to facilitate their development.
The other group is 4 pre-teens (3 girls, one boy, one of the girls plays viola, others: violin), all 11-13 years of age. The focus will be on posture, of course, but with a strong reading element, and they will have learned 4-5 mildly complex pieces by the end of their time.
I have a few private music students, and those lessons are truly a joy as well-- I love watching people grow and learn, and I love being the one to facilitate their development.
Friday, January 30, 2009
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