Rita Hayworth singing to the Pink Martini song "Amado Mio".... cool dubbing....enjoy!
Wednesday, May 30, 2007
Tuesday, May 29, 2007
Friday, May 25, 2007
TODAY'S WORD
From Joel & Victoria Osteen
www.joelosteen.com
Trust God’s Timing
Today's Scripture
“For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay.” (Habakkuk 2:3)
Today's Word from Joel and Victoria
There’s an old adage that says, “God’s answer to your prayer is seldom early, but it is never late!” God will give you the grace you need when you’re in His timing. So if you will keep a right attitude and not allow bitterness or resentment to take hold, then at the right time, in due season, God will answer your prayers. The answer may be “No,” or something different than you think, but it will be for your best. Habakkuk 2 tells you that God has an appointed time to answer your prayers so that you receive just what you need at just the right time to live victoriously and happily. You probably have dreams that God has put in your heart; wait for His timing to bring these dreams about. Your situation will improve, but on God’s timetable, not yours!
A Prayer for Today
God, I believe You are at work in my life bringing about what You know is best for me. My desire is to be patient as I faithfully await Your answers. In Jesus’ Name. Amen.
www.joelosteen.com
Trust God’s Timing
Today's Scripture
“For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay.” (Habakkuk 2:3)
Today's Word from Joel and Victoria
There’s an old adage that says, “God’s answer to your prayer is seldom early, but it is never late!” God will give you the grace you need when you’re in His timing. So if you will keep a right attitude and not allow bitterness or resentment to take hold, then at the right time, in due season, God will answer your prayers. The answer may be “No,” or something different than you think, but it will be for your best. Habakkuk 2 tells you that God has an appointed time to answer your prayers so that you receive just what you need at just the right time to live victoriously and happily. You probably have dreams that God has put in your heart; wait for His timing to bring these dreams about. Your situation will improve, but on God’s timetable, not yours!
A Prayer for Today
God, I believe You are at work in my life bringing about what You know is best for me. My desire is to be patient as I faithfully await Your answers. In Jesus’ Name. Amen.
Wednesday, May 23, 2007
TAKAYASU TREATMENT
In an autoimmune disease like Takayasu Arteritis, the immune system attacks and harms the bodies' own tissues. The exact cause of Takayasu's disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by 2 phases: 1) a systemic phase (inflamed stage, fever, fatigue, weight loss, etc.); and 2) an occlusive phase (narrowing of the affected arteries).
Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction. Under normal conditions, the immune system protects the body from diseases and infections by killing harmful "foreign" substances, such as germs, that enter the body. In an autoimmune reaction, the immune system mistakenly attacks and harms the body's own tissues. In this case, Takayasu arteritis is a chronic inflammatory condition that affects the largest blood vessel in the body (the aorta) and its branches.
Doctors usually begin treatment for Takayasu's arteritis with glucocorticoid medications, such as prednisone. If these medications alone do not work well, then stronger immunosuppressive drugs may be added, including methotrexate (Folex, Methotrexate, Rheumatrex), azathioprine (Imuran) or cyclophosphamide (Cytoxan, Neosar). Recent studies suggest that injectable etanercept (Enbrel) or infliximab (Remicade) may be helpful to control the vascular inflammation of Takayasu's arteritis when other medications fail. Blood pressure medications also may be necessary to control high blood pressure.
If Takayasu's arteritis has caused significant narrowing of an artery, the narrowed segment may need to be widened or repaired. Depending on the artery affected, this can be done in one of three ways:
- Traditional (open) surgery
- Percutaneous transluminal balloon angioplasty, in which a small balloon is inserted into the blood vessel, then inflated to dilate it
- Percutaneous placement of a stent, in which a small mesh device is placed in the artery to keep the blood vessel open
Inflamed segments of arteries may become weakened, leading to the formation of an aneurysm, or outpouching of the vessel. These may expand over time and rupture, a potentially life-threatening event; therefore, tests for aneurysm (including MRA) may be recommended for people with Takayasu's arteritis, and if an aneurysm is large or expanding, surgical repair may be recommended.
Symptoms usually go away in about 60% of people with Takayasu's arteritis when they are treated with glucocorticoids alone. However, symptoms return in about half of these patients. When people who have symptoms return are treated with a combination of glucocorticoids and other immunosuppressive drugs, 40% to 81% have symptoms go away again, but it's common for them to return later. Overall, about 77% of people with Takayasu's arteritis respond to some form of medical therapy.
In general, about 83% of people survive for at least 15 years after diagnosis. This figure drops to 66% for those with severe high blood pressure or significant damage to the aorta.
http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/24461.html
QUOTE OF THE DAY
Better to learn the truth, and be set free,
Than hide, and trust
to others exclusively.
TODAY'S WORD
From Joel & Victoria Osteen
joelosteen.com
Hope That Never Lets You Down
Today's Scripture
“Hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” (Romans 5:5)
Today's Word from Joel and Victoria
Even Christians can sometimes feel hopeless and powerless to overcome adversities. Maybe you feel trapped in your job, or your marriage is in trouble and there doesn’t seem to be an answer. You may have a child who is on the wrong path. Or maybe you are single and have given up any hope of ever meeting the right person. But no matter where you are, God can turn your situation around—and it could start happening today! If you believe with all your heart that God has something great around the corner for you, then hope will take over. God’s hope is such a powerful thing that it can keep you going when practically nothing else can. That’s because God’s hope will never fail or let you down, even if everything else does.
A Prayer for Today
God, thank You for giving me never-ending hope. I confess today that I will live confidently in Your hope because I know I’ll never be let down. In Jesus’ Name. Amen.
joelosteen.com
Hope That Never Lets You Down
Today's Scripture
“Hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” (Romans 5:5)
Today's Word from Joel and Victoria
Even Christians can sometimes feel hopeless and powerless to overcome adversities. Maybe you feel trapped in your job, or your marriage is in trouble and there doesn’t seem to be an answer. You may have a child who is on the wrong path. Or maybe you are single and have given up any hope of ever meeting the right person. But no matter where you are, God can turn your situation around—and it could start happening today! If you believe with all your heart that God has something great around the corner for you, then hope will take over. God’s hope is such a powerful thing that it can keep you going when practically nothing else can. That’s because God’s hope will never fail or let you down, even if everything else does.
A Prayer for Today
God, thank You for giving me never-ending hope. I confess today that I will live confidently in Your hope because I know I’ll never be let down. In Jesus’ Name. Amen.
TOP 10 LIST FOR SURVIVING TA
1. Listen to your body. If you need to cry then cry, if you need to sleep, then do so, if you need to talk to someone, seek out someone who will listen, if you need to reminisce, then take the time. It is important for the acceptance process that you go with the flow.
2. Lower expectations for yourself. You can't expect yourself to run at full capacity anymore. Give yourself a break and don't expect yourself to perform as well as you did prior to your illness. Educate others about your condition.
3. Let others know what you need from them. Don't expect others to know what you need. Communicate to family and friends how they can support you.
4. Take the time to do the things you need to do for yourself. When you feel up to it, engage in activities you feel the pull towards. It could be visiting a place you haven't been to in awhile, walks in nature, reading, bird watching, etc.
5. If you need counseling, get it. Get all the support you need. There are many support groups as well as counselors who specialize in long-term illness counseling. Don't hesitate to contact a medical and/or mental health specialist if you have feelings of hopelessness or suicidal thoughts.
6. Pamper yourself. Treat yourself well. Without breaking your budget, do things for yourself that are helpful like taking walks, being with people who are nurturing to you, soaking in long bubble baths and doing other inexpensive activities.
7. Keep a journal. Writing down your thoughts and feelings can help you to validate and work through your grief.
8. Get physical exercise. You will not be able to maintain a prior routine but accept your limitations and try to do stretching exercises as often as possible. Discuss an exercise regime with your doctor. Physical exercise can improve the way you feel.
9. Get proper diet and sleep. Maintaining a healthy diet and getting proper sleep is essential for functioning as well as you can. If you are having difficulty with either, discuss this with your doctor.
10. Be aware of others' reactions. Many people do not know how to react appropriately to your grief. Some are more comfortable than others in responding to your situation. Be aware that people have different ideas not only about illness, but about how ndividuals should react. Be true to yourself, and let others know if they say something inappropriate.
2. Lower expectations for yourself. You can't expect yourself to run at full capacity anymore. Give yourself a break and don't expect yourself to perform as well as you did prior to your illness. Educate others about your condition.
3. Let others know what you need from them. Don't expect others to know what you need. Communicate to family and friends how they can support you.
4. Take the time to do the things you need to do for yourself. When you feel up to it, engage in activities you feel the pull towards. It could be visiting a place you haven't been to in awhile, walks in nature, reading, bird watching, etc.
5. If you need counseling, get it. Get all the support you need. There are many support groups as well as counselors who specialize in long-term illness counseling. Don't hesitate to contact a medical and/or mental health specialist if you have feelings of hopelessness or suicidal thoughts.
6. Pamper yourself. Treat yourself well. Without breaking your budget, do things for yourself that are helpful like taking walks, being with people who are nurturing to you, soaking in long bubble baths and doing other inexpensive activities.
7. Keep a journal. Writing down your thoughts and feelings can help you to validate and work through your grief.
8. Get physical exercise. You will not be able to maintain a prior routine but accept your limitations and try to do stretching exercises as often as possible. Discuss an exercise regime with your doctor. Physical exercise can improve the way you feel.
9. Get proper diet and sleep. Maintaining a healthy diet and getting proper sleep is essential for functioning as well as you can. If you are having difficulty with either, discuss this with your doctor.
10. Be aware of others' reactions. Many people do not know how to react appropriately to your grief. Some are more comfortable than others in responding to your situation. Be aware that people have different ideas not only about illness, but about how ndividuals should react. Be true to yourself, and let others know if they say something inappropriate.
Monday, May 21, 2007
DANCE, SING, TALK YOURSELF TO SILLINESS
The Power of Silly!
Those of us who live with a chronic illness, deal with a lot of difficult emotions. I often find myself with feelings like frustration,boredom, loneliness, sadness, etc. For me, these emotions become their strongest at night, when I usually cannot sleep or go out. My biggest coping skills- going out for a walk or talking with a friend, are not options in the middle of the night. So, how can you alleviate these feelings when you are in your house by yourself? Dancing is one good way.
I have limited energy so I cannot dance a whole lot, but even a brief one song dance will help me out. If you cannot stand, you can still get your groove on from a seated position or even lying down. If you are sitting you can still move your head, arms, and torso. You can tap your feet, or move your legs to the music. If you are laying down you can wave your arms to the music or move your legs to the beat. Even just rotating your wrists to the music and making pretty postures with your fingers can feel good.
I am a big supporter of silly dancing. When I was still healthy and lived at home with my family, my sister and I would have these silly dancing “competitions,” where we would try to dance in the most ridiculous ways possible. It was very freeing to dance without rules or fear of judgment, and we would laugh and laugh at ourselves. This is a big stress reliever! We created dances like The Tush Push and The Worm. Dancing freely affords a wonderful opportunity to laugh at yourself! If you have pets, dancing with the dog or country line dancing with the cat can be lots of fun too. Even just dancing around them or in front of them will get you that quizzical, “What in the heck are you doing?” look, which makes the exercise all the more fun. Getting my cat’s confused gaze gives me an opportunity to laugh at how ridiculous I must look to her.
Another activity I enjoy is singing. If you are home alone you can sing at the top of your lungs and pretend you are a famous singer, belting it out for your adoring fans. Sometimes I sing and dance at the same time. Depending on my mood I might sing a real song, other times I will make one up on the spot. Sometimes I will sing a silly song about my cranky cat, or whatever comes to mind. You can make it a game and give yourself only 30 seconds to think of the next verse and it has to rhyme with the last one. It is fun to see how far you can get before getting stumped and having to start over.
I am also a big proponent of talking to yourself, talking to your pets, talking to God. Just because you look crazy, it doesn’t mean that you are! You can also write in a journal and say anything that you want to say to anyone that you want to say it to. Write a letter to that guy you like, saying everything you have wanted to say, knowing full well it will never see the light of day. You know that fight you had with your mother? Write a letter to her and get all of your feelings out on paper, then never show it to her. Writing is a good way to release those pent up emotions that you don’t know what to do with. If you are having a bad health day, vent your frustration and sadness on paper.
I have these dreams about big, messy art projects. I see myself with a giant canvas throwing paint all over it and smearing it all around with my fingers. Living in a small apartment with limited funds, I cannot actually buy a huge canvas, gallons of paint, and make a huge mess. However, I will often do smaller scale art projects. This is another way to put your emotions on paper. I like to draw, color, and paint. I suppose you could buy sculpting clay and get your emotions out by pounding it and molding it. Maybe kids finger paints are just what the doctor ordered? With my art there are no rules and no judgments. No one ever has to see it if I don’t want it to be seen. If it is just angry squiggles all over the paper, that’sokay. Sometimes if I’m mad I end up tearing holes in the paper because I am coloring so aggressively. Other times I take my time, draw a real picture, and color it in.
Drawing can help you symbolize your emotions on paper and help you figure out what you are feeling. I often have no idea what I will draw when I sit down to do it, I just let my hand and my imagination show me what needs to come out.
These are just a few ideas of ways to cope with and release those emotions you are feeling, when you are home and alone. I encourage you to be creative and fearless in coming up with new ways to express yourself. After all, no one is watching, so why not go for it? Being silly is cathartic. If you just need a release, dance, sing, make sexy poses in the mirror. No one is watching so laugh and have fun with yourself. This is truly some of the best medicine.
Written by Laura Markley © 2007 butyoudontlooksick.com
THE SPOON THEORY
Ever wondered how to explain TA chronic illness to normal people? Well, here's something I found that almost similarly describes it.
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My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com
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The Spoon Theory
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com
Saturday, May 19, 2007
MEDICAL BREAKTHROUGH IN AUTOIMMUNE DISEASES
Scientists Pinpoint Gene Behind Autoimmune Diseases
By Amanda Gardner
HealthDay Reporter
Wednesday, March 21, 2007; 12:00 AM
WEDNESDAY, March 21 (HealthDay News) -- Variations in one specific gene appear to be behind several different autoimmune and auto-inflammatory diseases.
The pinpointed region of chromosome 17, calledNALP1, could be a new target for treatment, said the authors of a study in the March 22 issue of theNew England Journal of Medicine.
"This part of the immune system may respond to triggers coming from the environment, like bacteria or viruses, and there are indications that you can turn it off. So, we're very, very hopeful that there may be drugs that allow us to do that," said the study's senior author, Dr. Richard A. Spritz, who directs the Human Medical Genetics Program at the University of Colorado at Denver and Health Sciences Center.
Spritz added, "That's not going to help people with childhood diabetes, where the damage is already complete. But, for a number of chronic autoimmune disorders, like lupus and vitiligo, if you turn off the autoimmune process, the body could repair itself."
Some 80 autoimmune and auto-inflammatory disorders, which occur when the immune system malfunctions and starts destroying normal tissue, affect between 15 million and 25 million people in the United States, particularly women.
A few of the autoimmune diseases are caused by mutations in single genes, but most appear to be more complex. Scientists suspect that some genes may predispose individuals to one or more diseases, whereas other genes may predispose individuals to autoimmune and auto-inflammatory diseases in general.
"There has been a feeling for decades that autoimmune diseases are somehow related," said Dr. Peter Gregersen, author of an accompanying editorial in the journal and director of the Robert S. Boas Center for Genomics and Human Genetics at the Feinstein Institute for Medical Research in Manhasset, N.Y.
Interactions between gene variants and environmental factors also play a role in triggering the onset of a disease.
Spritz and his colleagues have long focused on patients with vitiligo, a disorder in which pigment cells are destroyed, resulting in white patches on the skin and sometimes the hair. Individuals with vitiligo tend also to have other autoimmune and auto-inflammatory diseases, as do their relatives. But the combinations of diseases are not very consistent.
"They probably have genes that predispose more toward autoimmunity in general and not specific disorders," Spritz said.
The team did a systematic genetic analysis of 656 persons from 114 extended families in the United States and United Kingdom who had multiple autoimmune diseases, including vitiligo. This led them to a number of genetic possibilities, but the "hottest" signal was a region on chromosome 17, which had shown up previously as possibly harboring a lupus gene in families who also had vitiligo.
A closer examination revealed a collection of variations in a specific gene,NALP1.
"We don't really know which one causes the disease, but we can use the variations that we see as flags or markers of variations," Spritz explained. "These could be the ones that cause the disease or tell us about the ones that do."
But NALP1is probably only part of the picture.
"This can't be the whole story," Spritz said. "This is one of probably many genes that predispose to autoimmunity, but it looks like it may be involved in a pretty big way, which is why we were able to find it."
The gene is connected to the body's primitive immune system, which is involved with the earliest responses to outside attacks.
"It probably has a big effect, and it probably interacts in some complex way with other genes and other risk factors," Spritz pointed out. "We know a lot about this gene. It was not an anonymous gene that you would have to start from ground zero studying. We know that it's part of the surveillance system for attack by bacteria or viruses, part of the innate immune system."
"This work is really nice and elegant, and it's also provocative," Gregersen said. "It raises the issue of whether this gene might be involved in more common disorders."
He added that the research was a good example of "a successful, family-based approach to gene identification and an example of how new genes identified that way can raise new connections among different diseases."
More information
The U.S. National Institute of Arthritis and Musculoskeletal and Skin Diseases has more about autoimmune disorders.
SOURCES: Richard A. Spritz M.D., director, Human Medical Genetics Program, University of Colorado at Denver and Health Sciences Center, Aurora; Peter K. Gregersen, M.D., director, Robert S. Boas Center for Genomics and Human Genetics, Feinstein Institute for Medical Research, North Shore Long Island Jewish Health System, Manhasset, N.Y., and professor of medicine and pathology, New York University School of Medicine, New York City; March 22, 2007,New England Journal of Medicine
Friday, May 18, 2007
TODAY'S WORD
From Joel & Victoria Osteen
(joelosteen.com)
Trust God’s Strength
Today's Scripture
“The weakness of God is stronger than man’s strength.” (1 Corinthians 1:25)
Today's Word from Joel and Victoria
If you have ever struggled through a very difficult or trying time as a believer, then you probably know the supernatural strength that God has promised to give those who trust in Him. God’s strength is usually accompanied by His supernatural peace, and that should be an encouraging truth for you as you face whatever today holds! Learn to say, “God, I’m going to trust and serve You every day even when things don’t seem to be going my way.” As you wait on God, He will give you all the strength you need to fight the good fight of faith. And even when you go through difficulties, He’ll give you a supernatural peace right in the midst of those problems.
A Prayer for Today
God, thank You for holding me in Your hands. Give me strength to live within God, I know that You are strong enough for everything I will ever face. Help me to continue relying fully on You. In Jesus’ Name. Amen.
(joelosteen.com)
Trust God’s Strength
Today's Scripture
“The weakness of God is stronger than man’s strength.” (1 Corinthians 1:25)
Today's Word from Joel and Victoria
If you have ever struggled through a very difficult or trying time as a believer, then you probably know the supernatural strength that God has promised to give those who trust in Him. God’s strength is usually accompanied by His supernatural peace, and that should be an encouraging truth for you as you face whatever today holds! Learn to say, “God, I’m going to trust and serve You every day even when things don’t seem to be going my way.” As you wait on God, He will give you all the strength you need to fight the good fight of faith. And even when you go through difficulties, He’ll give you a supernatural peace right in the midst of those problems.
A Prayer for Today
God, thank You for holding me in Your hands. Give me strength to live within God, I know that You are strong enough for everything I will ever face. Help me to continue relying fully on You. In Jesus’ Name. Amen.
Thursday, May 17, 2007
HEY YOU
HEY YOU
Don't you give up
It's not so bad
There's still a chance for us
HEY YOU
Just be yourself
Don't be so shy
There's reasons why it's hard
Keep it together, you'll make it alright
Our celebration is going on tonight
Poets and prophets will envy what we do
This could be good, hey you.
HEY YOU
Open your heart
It’s not so strange
You’ve got to teach this time
HEY YOU
Remember this
None of this is real
Including the way you feel
Refrain 1:
Keep it together
We’ll make it alright
Our celebration is going on tonight
Poets and prophets will envy what we do
This could be good, hey you.
Save your soul
Little sister
Save your soul
Little brother
HEY YOU
Save yourself
Don’t rely on anyone else
Refrain 2:
First love yourself
Then you can love someone else
If you can change someone else
Then you can save someone else
But you must first love yourself
Then you can love someone else
If you can change someone else
Then you have saved someone else
But you must first
HEY YOU
There on a fence
You’ve got a choice
One day it will make sense
HEY YOU
First love yourself
Or if you can’t
Try to love someone else
Refrain 1
Keep it together
We’ll make it alright
Our celebration is going on tonight
Poets and prophets will envy what we do
This could be good, hey you.
Refrain 2:
First love yourself
Then you can love someone else
If you can change someone else
Then you can save someone else
But you must first love yourself
Then you can love someone else
If you can change someone else
Then you have saved someone else
But you must first
TODAY'S WORD
From Joel & Victoria Osteen
(joelosteen.com)
Trust God’s Wisdom
Today's Scripture
“I am God — I only — and there is no other like me who can tell you what is going to happen. All I say will come to pass, for I do whatever I wish.” (Isaiah 46:9-10)
Today's Word from Joel and Victoria
Many people pray very intently and seriously for things that never come to pass—then they realize later what a blessing it was that God did not answer their prayer! We can only see today, one moment at a time, but God knows how today’s situations will impact us tomorrow, next week, or even ten years from now! So many people have told us, “I’m so thankful God didn’t answer my prayer. He knew what was best for me, and now that I look back I can see how all things have worked for my good.” What a perfect example of something that is easy to forget—that sometimes the best thing that can happen to you is the exact opposite of what you want to happen. God knows the past and the future, and He always has the sequence of events in your life in perfect order. As God said in Isaiah, everything He says will come to pass, so make sure that you’re following Him.
A Prayer for Today
God, I’m so glad that You have the infinite wisdom to take perfect care of me. Give me the ability to rest in Your wisdom and not rely on my own. In Jesus’ Name. Amen.
(joelosteen.com)
Trust God’s Wisdom
Today's Scripture
“I am God — I only — and there is no other like me who can tell you what is going to happen. All I say will come to pass, for I do whatever I wish.” (Isaiah 46:9-10)
Today's Word from Joel and Victoria
Many people pray very intently and seriously for things that never come to pass—then they realize later what a blessing it was that God did not answer their prayer! We can only see today, one moment at a time, but God knows how today’s situations will impact us tomorrow, next week, or even ten years from now! So many people have told us, “I’m so thankful God didn’t answer my prayer. He knew what was best for me, and now that I look back I can see how all things have worked for my good.” What a perfect example of something that is easy to forget—that sometimes the best thing that can happen to you is the exact opposite of what you want to happen. God knows the past and the future, and He always has the sequence of events in your life in perfect order. As God said in Isaiah, everything He says will come to pass, so make sure that you’re following Him.
A Prayer for Today
God, I’m so glad that You have the infinite wisdom to take perfect care of me. Give me the ability to rest in Your wisdom and not rely on my own. In Jesus’ Name. Amen.
Wednesday, May 16, 2007
HELPFUL MEMORY BOOSTERS FOR TAers
As we all know, one of the downsides on taking prednisone or other meds/TIAs is memory loss.
Here are a few tips to increase or at least boost or improve your memory.
From Washingtonian magazine (http://www.washingtonian.com/articles/health/3775.html)
Here are a few tips to increase or at least boost or improve your memory.
From Washingtonian magazine (http://www.washingtonian.com/articles/health/3775.html)
- Doing word games, puzzles, and other mental exercises.
- Have a broad range of interests like taking a course(s), reading, attending plays.
- Physical exercise is key, too. Aerobic activity increases blood flow and oxygen in the brain
- There is also evidence that certain foods may help the brain. Deficiencies of vitamins B-12 and B-1 and folic acid have been linked to cognitive impairment—so, theory goes, foods rich in these nutrients may protect the brain. “Antioxidants may also be important, and there is a growing body of evidence that suggests fish oil may be important", says Dr. Aisen, a professor in the departments of neurology and medicine at Georgetown University.
- The Alzheimer’s Association suggests eating more• antioxidant-rich vegetables such as spinach, kale, brussels sprouts, broccoli, beets, red bell pepper, onion, corn, and eggplant,• dark-skinned fruits including raisins, blueberries, prunes, blackberries, strawberries, raspberries, plums, oranges, red grapes, and cherries,• cold-water fish including halibut, mackerel, salmon, trout, and tuna, and• nuts, such as almonds, pecans, and walnuts.
- Social interaction is another boost to brain health. According to the Alzheimer’s Association, studies have found that activities like dancing, which combines physical and mental challenge along with companionship, have the greatest benefit. Dr. Gordon, who has written books on improving memory, says that it’s not the activity that matters but doing something to keep mind and body active.
From Consumer Reports on The Best of Health.
Mental ability on some tasks varies over the course of a day by 20 or 30 percent. Here's how you can be smart all day long.
Creativity and the ability to process information peaks in the morning. It's an ideal time for writing, generating ideas, or studying subjects such as math.
Alertness peaks shortly before noon. This is the best time for tackling complex problems that require careful logic or planning but not maximum creativity.
Short term memory peaks in the morning. This is a good time to review notes for a meeting or a test early in the day.
Long term memory peaks in the late afternoon or early evening. It's a good time to soak up new information.
And some helpful tips from fellow TAer Gid:
"Ahhhh, the beauty of the bright yellow/orange post'ems. The daily ones, i.e. turn off the stove, etc. are posted with a small amt of tape to my front door.....I have begun to be very very consciencious about my appointment calendar. I carry it everywhere."
MAY IS AUTOIMMUNE DISEASE AWARENESS MONTH
(Information c/o Sharon)
This is Autoimmune Disease Awareness Month. The Vasculitis Foundation is urging everyone affected by vasculitis or TA to write to Congress and do the following:
- Take Action to Raise Awareness about Vasculitis
- Educate congressional health policy makers about the prevalence of autoimmune disease
- Lay the health care policy foundation that will support future decisions to fund autoimmune disease and vasculitis research.
The VF makes it easy for you to write a letter to Congress. Check out their website:
- Take Action to Raise Awareness about Vasculitis
- Educate congressional health policy makers about the prevalence of autoimmune disease
- Lay the health care policy foundation that will support future decisions to fund autoimmune disease and vasculitis research.
The VF makes it easy for you to write a letter to Congress. Check out their website:
http://www.vasculitisfoundation.org/node/add/content_letter/620/619/598/
I know that TA is only 1 of the many 80 autoimmune diseases out there, but TA is rare, smoldering for years and life threatening once we find out. We have suffered the most since most of us have been diagnosed in the later stages and have had to endure dangerous side effects of the medications being prescribed to treat TA.
I know that TA is only 1 of the many 80 autoimmune diseases out there, but TA is rare, smoldering for years and life threatening once we find out. We have suffered the most since most of us have been diagnosed in the later stages and have had to endure dangerous side effects of the medications being prescribed to treat TA.
Let us urge Congress to take our autoimmune disease seriously and to advocate for more standardized diagnostic testing for TA that would ensure our safety.
Speak out, get involve, be heard!!!
Tuesday, May 15, 2007
REMICADE INFUSION THERAPY TREATMENT FOR TA
Anti-tumor necrosis factor therapy in patients with difficult to treat Takayasu arteritis.
Center for Vasculitis Care and Research,
Cleveland Clinic Foundation,
Cleveland, Ohio 44195, USA.
OBJECTIVE: Granulomatous inflammation is a typical feature of Takayasu arteritis (TA), and tumor necrosis factor (TNF) is important in the formation of granulomas. In this study, we assessed therapy with anti-TNF agents in patients with TA that was not controlled by glucocorticoid therapy or other immunosuppressants.
METHODS: We conducted an open-label trial of anti-TNF therapy at 3 academic medical centers over a period of 4.25 years. Fifteen patients with active, relapsing TA (median 6 years) were selected. Seven received etanercept (later changed to infliximab in 3 patients), and 8 received infliximab. Relapses had occurred in all patients while they were receiving glucocorticoids and, in 13 patients, additional immunosuppressive drugs. No other agents were added to the treatment regimen concurrently with anti-TNF. If patients were receiving cytotoxic agents, the dosage was not increased. Clinical symptoms were recorded, and physical examinations, laboratory studies, and serial magnetic resonance imaging were performed.
RESULTS: The median daily dose of prednisone required to maintain remission prior to anti-TNF therapy was 20 mg. Ten of the 15 patients achieved complete remission that was sustained for 1-3.3 years without glucocorticoid therapy. Four patients achieved partial remission, with a >50% reduction in the glucocorticoid requirement. At a median of 12 months of followup, the median dose of prednisone was 0. Therapy failed in 1 patient. In 9 of the 14 responders, an increase in the anti-TNF dosage was required to sustain remission. Two relapses occurred during periods when anti-TNF therapy (etanercept) was interrupted, but remission was reestablished upon reinstitution of therapy.
CONCLUSION: In this pilot study of relapsing TA, addition of anti-TNF therapy resulted in improvement in 14 of 15 patients and sustained remission in 10 of 15 patients, who were able to discontinue glucocorticoid therapy. Anti-TNF may be a useful adjunct to glucocorticoids in the treatment of TA. Our results justify a randomized, controlled clinical trial of anti-TNF therapy for TA.
POSITIVE AFFIRMATION OF THE DAY
When others project on me, I am free to reject or accept it.
I also have the wisdom
to know when others
are just projecting on me
or if they are pointing out a fault
in my personality that I really have.
I let go of the need for approval or recognition from others.
MEDICAL RESEARCH BREAKTHROUGHS IN RARE DISORDERS
Excerpts From Rare Diseases Newsbriefs website
http://www.rarediseases.org/news/newsbriefs
CETT Increases Access to Genetic Tests
The Office of Rare Diseases of the National Institutes of Health has recently developed a new pilot program to help increase access to genetic tests for rare diseases. The Collaboration Education and Test Translation Program (CETT) is helping to make new genetic tests available to patients and families more quickly than was previously possible by encouraging the formation of collaborative teams that include a clinical laboratory, researcher, expert clinician and advocacy group for a particular rare disorder.
The mission of the CETT Program is to promote the development of new genetic tests for rare diseases; facilitate the translation of genetic tests from research laboratories to clinical practices; establish collaborations and provide education about each rare genetic disease, related genetic research and the clinical impact of testing; and support the collection and storage of genetic test result information in publicly accessible databases to leverage the information into new research and new treatment possibilities.
In the past year, ten new genetic tests for rare diseases have been made available to the public as a result of the CETT Program. The conditions that can now be tested for and the clinical laboratories providing testing are: Joubert syndrome (Prevention Genetics), Cornelia de Lange syndrome (University of Chicago), cherubism (Hospital for Sick Children Toronto), X-linked chondrodysplasia punctata (University of Chicago), Kallman syndrome (GeneDx), progressive familial intrahepatic cholestasis (Baylor College of Medicine), Russell Silver syndrome (Emory University) mucopolysaccharidosis type VI (Emory University), Niemann Pick disease type A/B (Emory University) and X-linked periventricular nodular heterotopia (Harvard University). Information about testing for these conditions is available at www.genetests.org.
Collaborative groups can apply to the CETT Program for funds to aid in the process of developing a new genetic test for a rare disease. For more information, please visit the CETT Program web site at www.cettprogram.org.
------------
Lev Reports Positive Results in Phase III HAE Trial
Lev Pharmaceuticals has reported positive results from its Phase III trial of C1-esterase inhibitor (C1-INH) for the treatment of acute episodes of hereditary angioedema (HAE). The company is also examining the use of this product in preventing HAE attacks in severely affected individuals. Lev has announced that it plans to file a Biologics License Application (BLA) for this product later this year.HAE is a rare and potentially life-threatening inflammatory condition for which there is currently no FDA-licensed acute therapy in the United States. The disorder is characterized by recurrent episodes of the accumulation of fluids outside the blood vessels, blocking the normal flow of blood or lymphatic fluid and causing rapid swelling of tissues in the hands, feet, limbs, face, intestinal tract or airway. HAE attacks may be mistaken for allergic reactions. When the airway is affected, the condition may become life-threatening. For information on the HAE clinical trials, contact the company at 675 Third Ave., Suite 2200, New York, NY, 10017l; (212) 682-3096.
-----------
Alexion Pharmaceuticals
Alexion is being honored for the development of Soliris, the first treatment to be approved by the U.S. Food and Drug Administration (FDA) for the rare blood disorder known as paroxysmal nocturnal hemoglobinuaria (PNH). This disorder affects approximately one in a million people. It is characterized by abnormal development of red blood cells. Components of the body’s immune system attack and destroy these abnormal cells, causing anemia and debilitating weakness. In severe cases, the disease may lead to life-threatening heart attacks and strokes.
http://www.rarediseases.org/news/newsbriefs
CETT Increases Access to Genetic Tests
The Office of Rare Diseases of the National Institutes of Health has recently developed a new pilot program to help increase access to genetic tests for rare diseases. The Collaboration Education and Test Translation Program (CETT) is helping to make new genetic tests available to patients and families more quickly than was previously possible by encouraging the formation of collaborative teams that include a clinical laboratory, researcher, expert clinician and advocacy group for a particular rare disorder.
The mission of the CETT Program is to promote the development of new genetic tests for rare diseases; facilitate the translation of genetic tests from research laboratories to clinical practices; establish collaborations and provide education about each rare genetic disease, related genetic research and the clinical impact of testing; and support the collection and storage of genetic test result information in publicly accessible databases to leverage the information into new research and new treatment possibilities.
In the past year, ten new genetic tests for rare diseases have been made available to the public as a result of the CETT Program. The conditions that can now be tested for and the clinical laboratories providing testing are: Joubert syndrome (Prevention Genetics), Cornelia de Lange syndrome (University of Chicago), cherubism (Hospital for Sick Children Toronto), X-linked chondrodysplasia punctata (University of Chicago), Kallman syndrome (GeneDx), progressive familial intrahepatic cholestasis (Baylor College of Medicine), Russell Silver syndrome (Emory University) mucopolysaccharidosis type VI (Emory University), Niemann Pick disease type A/B (Emory University) and X-linked periventricular nodular heterotopia (Harvard University). Information about testing for these conditions is available at www.genetests.org.
Collaborative groups can apply to the CETT Program for funds to aid in the process of developing a new genetic test for a rare disease. For more information, please visit the CETT Program web site at www.cettprogram.org.
------------
Lev Reports Positive Results in Phase III HAE Trial
Lev Pharmaceuticals has reported positive results from its Phase III trial of C1-esterase inhibitor (C1-INH) for the treatment of acute episodes of hereditary angioedema (HAE). The company is also examining the use of this product in preventing HAE attacks in severely affected individuals. Lev has announced that it plans to file a Biologics License Application (BLA) for this product later this year.HAE is a rare and potentially life-threatening inflammatory condition for which there is currently no FDA-licensed acute therapy in the United States. The disorder is characterized by recurrent episodes of the accumulation of fluids outside the blood vessels, blocking the normal flow of blood or lymphatic fluid and causing rapid swelling of tissues in the hands, feet, limbs, face, intestinal tract or airway. HAE attacks may be mistaken for allergic reactions. When the airway is affected, the condition may become life-threatening. For information on the HAE clinical trials, contact the company at 675 Third Ave., Suite 2200, New York, NY, 10017l; (212) 682-3096.
-----------
Alexion Pharmaceuticals
Alexion is being honored for the development of Soliris, the first treatment to be approved by the U.S. Food and Drug Administration (FDA) for the rare blood disorder known as paroxysmal nocturnal hemoglobinuaria (PNH). This disorder affects approximately one in a million people. It is characterized by abnormal development of red blood cells. Components of the body’s immune system attack and destroy these abnormal cells, causing anemia and debilitating weakness. In severe cases, the disease may lead to life-threatening heart attacks and strokes.
----------
FDA Approves First Product for PNH
The U.S. Food and Drug Administration (FDA) on March 16, 2007, approved the orphan drug eculizumab (Soliris) for the treatment of paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder that affects approximately one in a million people. It is the first drug to be approved for this disorder.
“This product is important in that it offers a treatment other than blood transfusion that may help this small population of patients who are often very ill,” said Steven Gatson, MD, MPH, director of the Center for Drug Evaluation and Research at FDA. “This approval is one of multiple examples of how the orphan products program can benefit the public health with urgently needed products that would otherwise not be commercially available.”
Soliris was designated an “orphan” drug in 2003. This designation is for products being developed to treat diseases or conditions affecting fewer than 200,000 Americans. The manufacturer who obtains marketing approval for a designated orphan product is given seven years of marketing exclusivity.
PNH is characterized by abnormal development of red blood cells. When the abnormal cells are present in the bloodstream, naturally-occurring proteins that are components of the body’s immune system attack them and break them down. This causes anemia and may result in pain, fatigue, debilitating weakness, the need for frequent blood transfusions, and blood clots. In severe cases, the disease may lead to life-threatening heart attacks and strokes.
Soliris doesn’t cure PNH but it works to halt the destruction of red blood cells. It is a new molecular entity that contains an ingredient not previously marketed in the United States. The drug was developed by Alexion Pharmaceuticals, Inc., of Cheshire, Ct.
Because the drug acts by blocking certain actions within the body’s natural immune system, it carries a potential risk of increasing susceptibility to certain serious infections, particularly meningococcal infections. A special risk management plan has been developed for patients taking the drug to address this risk.
TODAY'S WORD
From Joel & Victoria Osteen
(joelosteen.com)
Trust God’s Goodness
Today's Scripture
“For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless.” (Psalm 84:11)
Today's Word from Joel and Victoria
Believing in God and trusting Him is easy when everything is going well, and there doesn’t seem to be anything bothering you. But to truly declare God’s goodness even when trials and confusion surround you is really trusting God. God is so good to you, He wants you to grow, mature, and learn from so many different situations. So even when things don’t make sense, keep a positive attitude knowing that God has your best interests at heart. You don’t always have to figure it out on your own, or go around living with a chip on your shoulder toward life. You can choose to trust God in everything, and live freely experiencing His blessing in your life!
A Prayer for Today
God, thank You for Your goodness and faithfulness. My prayer today is that I might learn to truly trust You and Your goodness in all circumstances. In Jesus’ Name. Amen.
(joelosteen.com)
Trust God’s Goodness
Today's Scripture
“For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless.” (Psalm 84:11)
Today's Word from Joel and Victoria
Believing in God and trusting Him is easy when everything is going well, and there doesn’t seem to be anything bothering you. But to truly declare God’s goodness even when trials and confusion surround you is really trusting God. God is so good to you, He wants you to grow, mature, and learn from so many different situations. So even when things don’t make sense, keep a positive attitude knowing that God has your best interests at heart. You don’t always have to figure it out on your own, or go around living with a chip on your shoulder toward life. You can choose to trust God in everything, and live freely experiencing His blessing in your life!
A Prayer for Today
God, thank You for Your goodness and faithfulness. My prayer today is that I might learn to truly trust You and Your goodness in all circumstances. In Jesus’ Name. Amen.
Monday, May 14, 2007
TODAY'S WORD
From Joel & Victoria Osteen
joelosteen.com
In His Hands
Today's Scripture
"I trust in you, O LORD; I say, 'You are my God.' My times are in your hands." (Psalm 31:14-15)
Today's Word from Joel and Victoria
The enemy crawls around looking for opportunities to steal your joy and tell you that God doesn't care about you anymore. It may seem at times that things are out of control and your life isn't going anywhere, but that's not true! Your life and times are in the hands of God, and even when things aren't going well He promises to stay by your side and be your strength. And because this is true, you will be at your strongest and most victorious when you put your complete trust in God and let Him have control of your life. You'll reach a new level of understanding, and have a new sense of peace in your heart, when you allow God to direct your steps each day.
A Prayer for Today
God, thank You for holding me in Your hands. Give me strength to live within Your will, trusting You even when I can't see the answer. In Jesus' Name. Amen.
joelosteen.com
In His Hands
Today's Scripture
"I trust in you, O LORD; I say, 'You are my God.' My times are in your hands." (Psalm 31:14-15)
Today's Word from Joel and Victoria
The enemy crawls around looking for opportunities to steal your joy and tell you that God doesn't care about you anymore. It may seem at times that things are out of control and your life isn't going anywhere, but that's not true! Your life and times are in the hands of God, and even when things aren't going well He promises to stay by your side and be your strength. And because this is true, you will be at your strongest and most victorious when you put your complete trust in God and let Him have control of your life. You'll reach a new level of understanding, and have a new sense of peace in your heart, when you allow God to direct your steps each day.
A Prayer for Today
God, thank You for holding me in Your hands. Give me strength to live within Your will, trusting You even when I can't see the answer. In Jesus' Name. Amen.
Friday, May 11, 2007
GOOD THING: MEDICAL ID BRACELET
Having a Medic Alert Bracelet is a good thing to have around and very important to wear for TAers like us. Imagine a situation where you are unable to communicate your medical history. With a Medic ID bracelet, it let's people know your medical problems and can save your life.
At first, I went to look at some websites that offer Medic Alert tags but I don't like the way they look. The run-of-the-mill kind look unattractive and cheaply made. But I found a website that offers a variety of styles and bought a cool one called Happy, Happy, Joy... check it out!
AFFIRMATION OF THE DAY
I am humble,
even though I know myself
as the eternal consciousness of God.
I am humble,
because no matter how awake I become,
I realize that
the human condition
is a lifelong limitation
and I cannot be perfect all the time.
Thursday, May 10, 2007
The Power of Attitudinal Vibes - Pure Positive Energy
Learn how our thoughts affect us internally, how what we are feeling will "send out" waves of negative or positive energy vibes to others..Exercises on how to change our thoughts from negatives to positives. Understand how your attitude is the maker or breaker of all of our communication - and your ability to make things happen - at an energetic level.
PART 1
AFFIRMATION OF THE DAY
I create subtle shifts in the consciousness of all that I meet.
I give darshan secretly to others, even while going about my daily tasks.
I influence others in positive ways.
MEET MARCI: TA FACES IN THE CROWD
Marci Medrano's TA Story
Name: Marci Medrano
Gender: female
State: Texas
Stage in TA: --Old Pro
I was 20 years old -- had a three month old daughter. During my pregnancy I was always tired and sick--I just thought it was cause I was pregnant. It was August of 1992 and always loved the sun. I had been at the Beach and when returning home --I was having trouble breathing--The Doc thought I was having a heat stroke. I was feeling sick so I stoppped at Grandma's house and she was not there so I went in called my mom to tell her where I was at cause she had my baby--I was so sick and throwing up and the only thing that hurt was my arm. Well, I fell asleep to later wake up ---LONG STORY short--I drove myself to the hospital--and was in ICU after that--I had a heart attack and did not realize it.--My left main was 90% closed and had to have emergency bypass . They sent a biopsy to Austin of my aorta cause it was so inflamed. That is how I found out about TA. They could not believe that I had just had a baby--they said with all the damage I had to have been sick for awhile.
Right now--I just had surgery to put a stent on one of the grafts that have closed. I have had two heart bypass surgeries --my left subclavian and carotid are 100% and have had surgery to fix those twice and no success my right side is about 50%. My renal artery is diseased as well.
I take predisone--solu-medrol,plavix.norvasc,crestor---I have taken methotrexate--cytoxan-remicade and none of those helped.
At times I just do not know how to deal with the TA.
The Doctors say I have an angel walking with me cause I almost died several times. I almost died twice last Wednesday during surgery and after when I was in ICU__I zero out. I just keep going--I have said ,I keep going for my daughters cause I want them to live a normal life and it hurts me for them to have to see me sick--I do everything I can --I go on trips --do everything imaginable to live that "normal life".
I am so happy that I have found someone to talk too.
I live in Victoria and have to travel to Houston to see the Docs there--I have never met anyone with the same sickness anywhere near me.
Thank you Marci for sharing your TA story.
TODAY'S WORD: GOD WILL OPEN THE DOOR
From Joel & Victoria Osteen's website
(joelosteen.com)
God Will Open the Door
Today's Scripture
"Pray for us, too, that God may open a door for our message." (Colossians 4:3)
Today's Word from Joel and Victoria
God will never lead you into something that you can't handle in His strength. God is equipped for anything out there, and you are also equipped with this earth-shaking power. God has promised to walk with you through everything. So why would He lead you somewhere, and then just drop you? The old saying goes that God will never close a door without opening another, and that's probably true. When you keep running into closed doors, keep pushing through because if you faithfully follow wherever God leads, you will find your open door. Each time you fall short, just get back up with ever greater determination to accomplish the dream that God has planted in your heart.
A Prayer for Today
God, it's exciting to know that You go ahead of me to open doors of opportunity and service. Give me the faith and perseverance to keep following You wherever You lead me. In Jesus' Name. Amen.
(joelosteen.com)
God Will Open the Door
Today's Scripture
"Pray for us, too, that God may open a door for our message." (Colossians 4:3)
Today's Word from Joel and Victoria
God will never lead you into something that you can't handle in His strength. God is equipped for anything out there, and you are also equipped with this earth-shaking power. God has promised to walk with you through everything. So why would He lead you somewhere, and then just drop you? The old saying goes that God will never close a door without opening another, and that's probably true. When you keep running into closed doors, keep pushing through because if you faithfully follow wherever God leads, you will find your open door. Each time you fall short, just get back up with ever greater determination to accomplish the dream that God has planted in your heart.
A Prayer for Today
God, it's exciting to know that You go ahead of me to open doors of opportunity and service. Give me the faith and perseverance to keep following You wherever You lead me. In Jesus' Name. Amen.
Wednesday, May 9, 2007
AFFIRMATION OF THE DAY
I view all of reality
from the eyes of eternal self.
By doing this nothing is as ordinary,
terrible, or unpleasant as it seems..
FYI: FOSAMAX LINKED TO JAW BONE TISSUE DEATH
If you're taking Fosamax for bone loss prevention,
please read the following.
-------------
FOOD AND DRUG ADMINISTRATION WARNING
FDA Warns Bisphosphonate (Fosamax)
Users of Risk of Osteonecrosis of the Jaw
Osteonecrosis of the jaw, generally associated with tooth extraction and/or local infection, often with delayed healing, has been reported in patients taking bisphosphonates. Most reported cases of bisphosphonate-associated osteonecrosis have been in cancer patients treated with intravenous bisphosphonates, but some have occurred in patients with postmenopausal osteoporosis. Known risk factors for osteonecrosis include a diagnosis of cancer, concomitant therapies (e.g., chemotherapy, radiotherapy, corticosteroids), poor oral hygiene, and co-morbid disorders (e.g., pre-existing dental disease, anemia, coagulopathy, infection).
Patients who develop osteonecrosis of the jaw (ONJ) while on bisphosphonate therapy should receive care by an oral surgeon. Dental surgery may exacerbate the condition. For patients requiring dental procedures, there are no data available to suggest whether discontinuation of bisphosphonate treatment reduces the risk for ONJ. Clinical judgment of the treating physician should guide the management plan of each patient based on individual benefit/risk assessment.
Source
Food and Drug Administration
Fosamax Label
please read the following.
-------------
FOOD AND DRUG ADMINISTRATION WARNING
FDA Warns Bisphosphonate (Fosamax)
Users of Risk of Osteonecrosis of the Jaw
Osteonecrosis of the jaw, generally associated with tooth extraction and/or local infection, often with delayed healing, has been reported in patients taking bisphosphonates. Most reported cases of bisphosphonate-associated osteonecrosis have been in cancer patients treated with intravenous bisphosphonates, but some have occurred in patients with postmenopausal osteoporosis. Known risk factors for osteonecrosis include a diagnosis of cancer, concomitant therapies (e.g., chemotherapy, radiotherapy, corticosteroids), poor oral hygiene, and co-morbid disorders (e.g., pre-existing dental disease, anemia, coagulopathy, infection).
Patients who develop osteonecrosis of the jaw (ONJ) while on bisphosphonate therapy should receive care by an oral surgeon. Dental surgery may exacerbate the condition. For patients requiring dental procedures, there are no data available to suggest whether discontinuation of bisphosphonate treatment reduces the risk for ONJ. Clinical judgment of the treating physician should guide the management plan of each patient based on individual benefit/risk assessment.
Source
Food and Drug Administration
Fosamax Label
http://www.fosamaxjawdeath.com/lawyer/FDA_warning.html
OSTEOCRENOSIS INFORMATION
http://www.fosamaxjawdeath.com/lawyer/osteonecrosis_information.html
MERCK SUED OVER FOSAMAX HEALTH RISKS
Bloomberg News
April 11,2006
FOSAMAX HEALTH WARNINGS
http://www.fosamaxjawdeath.com/lawyer/fosamax_health_warnings.html
http://www.fosamaxjawdeath.com/lawyer/osteonecrosis_information.html
MERCK SUED OVER FOSAMAX HEALTH RISKS
Bloomberg News
April 11,2006
FOSAMAX HEALTH WARNINGS
http://www.fosamaxjawdeath.com/lawyer/fosamax_health_warnings.html
Tuesday, May 8, 2007
THINGS THAT I AM THANKFUL FOR
1. Good sleep.
2. Feel good movie.
3. Good blood sugar reading.
4. Beautiful day like today.
5. Laughter.
2. Feel good movie.
3. Good blood sugar reading.
4. Beautiful day like today.
5. Laughter.
LAUS DEO
One detail that is never mentioned is that in D.C. there can never be a building of greater height than the Washington Monument.
With all the uproar about removing the ten commandments, etc., this is worth a moment or two of your time. I was not aware of this amazing historical information.On the aluminum cap, atop the Washington Monument in Washington, D.C., are displayed two words: Laus Deo.
No one can see these words. In fact, most visitors to the monument are totally unaware they are even there and for that matter, probably couldn't care less.Once you know Laus Deo's history, you will want to share this with everyone you know. These words have been there for many years; they are 555 feet, 5.125 inches high, perched top the monument, facing skyward to the Father of our nation, overlooking the 69 square miles which comprise the District of Columbia, capital of the United States of America.
With all the uproar about removing the ten commandments, etc., this is worth a moment or two of your time. I was not aware of this amazing historical information.On the aluminum cap, atop the Washington Monument in Washington, D.C., are displayed two words: Laus Deo.
No one can see these words. In fact, most visitors to the monument are totally unaware they are even there and for that matter, probably couldn't care less.Once you know Laus Deo's history, you will want to share this with everyone you know. These words have been there for many years; they are 555 feet, 5.125 inches high, perched top the monument, facing skyward to the Father of our nation, overlooking the 69 square miles which comprise the District of Columbia, capital of the United States of America.
Laus Deo! Two seemingly insignificant, unnoticed words. Out of sight and, one might think, out of mind, but very meaningfully placed at the highest point over what is the most powerful city in the most successful nation in the world.
So, what do those two words, in Latin, composed of just four syllables and only seven letters, possibly mean? Very simply, they say "Praise be to God!"Though construction of this giant obelisk began in 1848, when James Polk was President of the United States, it was not until 1888 that the monument was inaugurated and opened to the public. It took twenty-five years to finally cap the memorial with a tribute to the Father of our nation, Laus Deo.
So, what do those two words, in Latin, composed of just four syllables and only seven letters, possibly mean? Very simply, they say "Praise be to God!"Though construction of this giant obelisk began in 1848, when James Polk was President of the United States, it was not until 1888 that the monument was inaugurated and opened to the public. It took twenty-five years to finally cap the memorial with a tribute to the Father of our nation, Laus Deo.
"Praise be to God!" From atop this magnificent granite and marble structure, visitors may take in the beautiful panoramic view of the city with its division into four major segments. From that vantage point, one can also easily see the original plan of the designer, Pierre Charles l'Enfant ...a perfect cross imposed upon the landscape, with the White House to the north. The Jefferson
Memorial is to the south, the Capitol to the east and the Lincoln Memorial to the west.
Memorial is to the south, the Capitol to the east and the Lincoln Memorial to the west.
Praise be to God! Within the monument itself are 898 steps and 50 landings. As one climbs the steps and pauses at the landings the memorial stones share a message On the 12th Landing is a prayer offered by the City of Baltimore; on the 20th is a memorial presented by some Chinese Christians; on the 24th a presentation made by Sunday School children from New York and Philadelphia quoting Proverbs 10:7, Luke 18:16 and Proverbs 22:6. Praise be to God! When the cornerstone of the Washington Monument was laid on July 4th, 1848 deposited within it were many! items including the Holy Bible presented by the Bible Society. Praise be to God! Such was the discipline, the moral direction, and the spiritual mood given by the founder and first President of our unique democracy "One Nation, Under God."
When one stops to observe the inscriptions found in public places all over our nation's capitol, he or she will easily find the signature of God, as it is unmistakably inscribed everywhere you look. You may forget the width and height of "Laus Deo", its location, or the architects but no one who reads this will be able to forget its meaning, or these words: "Unless the Lord builds the house its builders labor in vain. Unless the Lord watches over the city, the watchmen stand guard in vain." (Psalm 127: 1)
"LAUS DEO!!!!"
AFFIRMATION OF THE DAY
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When I forget how to laugh, I seek the company of children or funny people.
If none are around, I laugh out loud by myself.
If none are around, I laugh out loud by myself.
Monday, May 7, 2007
CLEVELAND CLINIC STUDY ON TAKAYASU
http://www.clevelandclinic.org/quality/outcomes/rheumaticAndImmunologic/takayasu.htm
TAKAYASU ARTERITIS (TAK): DISEASE CHARACTERISTICS
OUTCOMES IN A COHORT OF 75 PATIENTS
Background
More than 150 such patients are followed by the center’s staff and referring doctors. Seventy-five patients receive care principally from the center’s staff. We evaluated clinical, laboratory and radiographic data from 76 patients with TAK who received care from one physician within our Center for Vasculitis Care and Research.
Results
Clinical Symptoms Compared to NIH Cohort
[KM McKinnon, TM Clark, GS Hoffman]
TAKAYASU ARTERITIS (TAK): DISEASE CHARACTERISTICS
OUTCOMES IN A COHORT OF 75 PATIENTS
Background
Takayasu arteritis (TAK) is a rare chronic inflammatory disease of unknown cause that has a predilection for large arteries. It most often affects the aorta and its primary branches. Although once thought to be a disorder that primarily affected young females from the Far East, TAK has been identified in both genders and in many ethnic and racial groups worldwide. The incidence of TAK has been reported in 2.6 cases/million population/year in Olmstead County, Minn., and in 1.2 cases/million population/year in Sweden. Few medical centers in the United States have amassed an adequate experience with TAK to enable comparisons of disease features and outcomes with cohorts reported from Asia and Mexico. Since 1992, Cleveland Clinic’s Center for
Vasculitis Care and Research has provided a standardized approach to diagnosis, follow-up and treatment of patients with TAK, including obligatory imaging of the entire aorta and its branch vessels at least every six to 12 months. This approach was derived from that of the National Institutes of Health (NIH) longitudinal cohort. The NIH study suggests that TAK is a chronic, relapsing illness, associated with considerable morbidity; these outcomes are less optimistic than had been reported from cohorts in the Far East.
More than 150 such patients are followed by the center’s staff and referring doctors. Seventy-five patients receive care principally from the center’s staff. We evaluated clinical, laboratory and radiographic data from 76 patients with TAK who received care from one physician within our Center for Vasculitis Care and Research.
Methods Response to treatment was considered successful if signs or symptoms of disease activity were absent, laboratory studies were normal, and new vascular abnormalities were not identified on sequential imaging studies over an interval of at least six months. Remission was judged to be present if these guidelines were met and the patient required <>
Results
Ninety-one percent of TAK patients were female; 88% were Caucasian. Mean age was 26 years. The most common signs and symptoms of disease included absent pulse (57%), BP asymmetry (55%), headache (53%), limb claudication (52%), fever (35%), hypertension (28%) and arthralgias with myalgias (13%). The most common vessels involved were subclavian (65%), carotid (44%), mesenteric (32%), renal (25%), and femoral (28%) arteries. Sixteen percent of patients had a monophasic course, requiring no sustained therapy. In the 30 patients who received extended follow-up care at our center, relapses were frequent, occurring an average 2.9 times/ patient over a median period of two years. Nineteen of 30 patients required vascular interventions. Eight of 30 became disabled. There were two deaths in this group.
Clinical Symptoms Compared to NIH Cohort
Distribution of Arterial Lesions Cleveland Clinic Cohort
Conclusions
Our experience represents the largest cohort of TAK patients in the United States. The clinical characteristics of our patients are similar to those published from the NIH cohort in regard to signs, symptoms and lesion distribution. Although most patients achieved remission, 70% required agents other than prednisone for maintenance therapy. Of all patients who received therapy, 30% required more than two immunosuppressive agents in addition to corticosteroids. The number of patients who achieved long-term remission is low. Of the group followed at our center for at least two years (median 3.75 years), treatment resulted in disease control in 89% of patients, but only 8% achieved steroid-free remission. Despite continued advances in medical and surgical interventions, significant morbidity from TAK and its therapy remains high. Data from our recently published open-label study suggest that anti-TNF agents may improve outcomes in TAK. A randomized-controlled trial, however, will be necessary to determine whether such therapy is appropriate for patients with this disease.
[KM McKinnon, TM Clark, GS Hoffman]
Sunday, May 6, 2007
AFFIRMATION OF THE DAY
"Life is change, and I adapt easily to the new. I accept life - past, present and future, TA and all."
PREDNISONE POEM
I TOOK YOU BUT YOU WON'T TAKE ME
By Heather Glaser
I took you so I would not die
I took you and you made me cry
I took you and u keep me up
I took you and I look beat up
I took you and my hair got thin
I took you but you will not win
I took you and my face got round
I took you and gained fifty pounds
I took you and you caused me pain
I took you with no one to blame
I took you because the Doctors don’t know
I took you and have life to show
I took you through my High School years
I took you along with all my fears
I took you as I almost died
I took you as my family cried
I took you as everyone prayed
I took you each and every day
I took you so just let me be
I took you but you won’t take me
By Heather Glaser
I took you so I would not die
I took you and you made me cry
I took you and u keep me up
I took you and I look beat up
I took you and my hair got thin
I took you but you will not win
I took you and my face got round
I took you and gained fifty pounds
I took you and you caused me pain
I took you with no one to blame
I took you because the Doctors don’t know
I took you and have life to show
I took you through my High School years
I took you along with all my fears
I took you as I almost died
I took you as my family cried
I took you as everyone prayed
I took you each and every day
I took you so just let me be
I took you but you won’t take me
TA FACES IN THE CROWD
Sharon's Takayasu Story
Name: Sharon Janushewski
Gender: Female
Stage in TA (newbie, old pro/guru, in remission): Inactive old pro/guru
State or Country: Ontario, Canada
Hi Sharon, please tell me a little about you, short brief introduction or background. How did you find out that you had TA?
I am retired Medical Laboratory Technologist, married 36 years with two daughters, one grandson and another grandchild on the way.
In November of 1980, at the age of 30, my husband and I were doing some home decorating. My left arm would ache and my hand would sometimes become cold, but the pain would be relieved by putting my arm back down. About three weeks into the project, it felt like my arm was not getting enough blood circulation. I felt for a pulse, but was not able to get one in my left wrist. The next day I went to my family doctor who immediately contacted a vascular surgeon.
I saw the surgeon in the emergency department of the hospital within a couple of hours. He examined me and said there was still circulation, but it was greatly reduced. In January of 1981, I had an angiogram. The angiogram showed stenosis in the left subaxillary artery and collateral circulation. I was readmitted in March of 1981 and a balloon angioplasty of the affected area was performed. The procedure resulted in the production of a small aneurysm in the area. I had a follow up exam with the vascular surgeon in April and at that time he said there was a disease called “Takayasu’s Disease”, but with that there are no pulses anywhere, so he did not think I had it.
Everything went well for a couple of months and then I started having similar symptoms in my right arm. I had angiograms and attempted angioplasties in July and September 1981. The angioplasties were unsuccessful due to technical difficulties. After my vascular surgeon suggested a first rib resection, I sought a second opinion. The second vascular surgeon felt my problem was of a rheumatologic nature. He sent me within days to the Vasculitis in Toronto. Armed with my angiography films, blood work results and after a three hour exhausting case history interview and examination, the doctor announced that he felt I had Takayasu’s Disease.
On Christmas Eve 1981 following tests to rule out anything, but TA and over a year after my symptoms were noticeable, I finally started my first two year treatment with prednisone.
Since TA is a smouldering/brewing disease, did you find out right away that you had TA or how many years before finally being correctly diagnosed with TA?
I was diagnosed in December 1981, a year after I noticed my first symptoms, but my doctors feel the disease had likely been active for three to five years earlier, when I was having my children.
How do you feel now? What was going through your mind? What’s your outlook like? What medications are you on right now?
At present, I feel great. I was inactive on meds (Prednisone and then Methotrexate) from 1991 until 2003 and off all TA meds since 2003. I currently only take vitamins, Calcium (to prevent osteoporosis due to long term steroid therapy) and folic acid. I have always had a very positive outlook since being diagnosed with TA and monitor the course of my disease and track my blood results.
Have you been on any clinical trials for TA? Where and what was it like?
I have not been involved in any trials, but before my original treatment and on some subsequent appointments, blood was drawn to freeze as a baseline if future diagnostics tests became available. I inquired about the Longitudinal Study in the USA, but being from Canada, I am not eligible.
What’s the best and biggest lesson you’ve learned dealing with TA? Any inspiring words, amusing, funny TA stories, favourite hero, saying, books, songs, etc.?
I have never let my disease take control of my life. I have had to take medications in the past, but kept a positive attitude throughout the ordeal. Although I have had a few flares over the past 27 years, I remain optimistic that I will defeat this rare disease. My heroes are all of us with this disease. I started a support group in our area. We meet for lunch so those of us with TA can meet our peers and caregivers and vent about the disease.
Is there anything you’d like to tell other TA patients, family or people in general?
Keep on top of your treatment; don’t be afraid to ask questions of your health care providers. The more we learn about this disease, the sooner, we can find the cause and hopefully the cure.
Thank you Sharon for sharing your story.
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