As many of you know I have been on steroids for my entire adult life for lupus control. This has caused a condition called AVN or Avascular Necrosis. I have had four joints replaced, actually the bones which make up the joint, due to this destructive condition for which western medicine has no cure. The outlook is devastating for someone as independent as me. I am coming to terms with it more now due to increase pain and decrease mobility. It has spread to most of my large bones and some small. Think of swiss cheese. I say this because I want people to understand why one day I walk tall and the next I am with walker, cane or wheel chair. I am ordering a motorized chair soon so do not be shocked when you see me in it. I am trying to be positive and proactive doing all I can to make it ok mentally and emotionally while doing all I can physically and nutritionally as possible. After 20 years of dealing with it's progression I have to face the facts so I have listed them here for you to ponder. Please do not bombard me with all sort of alternative treatments I have studied and done everything under the sun. The fact I exercise, walk and live a fairly normal life is amazing enough. I will continue to be active but changes are expected and miracles always happen. See my bones strong and blood vessels bring blood to them.
Definition
Avascular necrosis is death of bone tissue due to a lack of blood supply. This can lead to tiny breaks in the bone and the bone's eventual collapse. Avascular necrosis most often affects the head of the thighbone (femur), causing hip pain. But it may affect other bones as well.
Blood supply to the bone can be impaired for a number of reasons, including injuries. Avascular necrosis is also associated with long-term use of steroid medications. Can be caused by lupus, other diseases and alcoholism. Your doctor might use other terms to describe avascular necrosis, such as osteonecrosis, aseptic necrosis or ischemic bone necrosis.
Avascular necrosis is progressive, meaning it worsens with time. Managing the condition is a lifelong process.
Symptoms
Avascular necrosis may cause no signs or symptoms. But some people experience pain or a loss of range of motion in the affected joint. Where you experience pain depends on where the avascular necrosis occurs. For instance:
* Avascular necrosis of the hip may cause pain in your groin. Pain may radiate down your thigh to your knee. Pain is usually worse when standing or walking.
* Avascular necrosis of the wrist may cause wrist pain and finger weakness. You might feel less pain when you keep your hand still. The wrist bones most commonly associated with avascular necrosis include the lunate (Kienbock disease) and the scaphoid (Preiser disease).
* Avascular necrosis of the knee causes knee pain. The bone most commonly affected is the lower end of the thighbone (femur).
* Avascular necrosis of the shoulder usually involves the head of your upper arm bone (humerus). Pain and stiffness are common.
Avascular necrosis may also develop in the bones of your foot, ankle, spine and jaw.
Tests and diagnosis
To determine what's causing your pain, your doctor will ask about your medical history and your current signs and symptoms. He or she will likely want to know what actions increase your pain and what relieves it.
In order to diagnose avascular necrosis, your doctor may request images be taken to get a closer look at your bones. Common tests for avascular necrosis include:
* X-rays. X-rays usually appear normal in people who have early-stage avascular necrosis. Later stages may be more evident on an X-ray.
* Magnetic resonance imaging (MRI). MRI scans can show early changes in the bone that may indicate avascular necrosis.
Depending on your signs and symptoms, your doctor may use other tests to diagnose avascular necrosis. In rare cases, your doctor may surgically remove a small piece of bone (biopsy) for laboratory examination.
Complications
Avascular necrosis that goes untreated will continue causing deterioration of the bone. Eventually the bone may become weakened enough that it collapses, causing pain and disability. Letting your avascular necrosis go untreated could lead to severe pain and loss of movement within two to five years.
Treatments and drugs
The goal of avascular necrosis treatment is to prevent further bone loss. What treatment you receive depends on the amount of bone damage you already have. Early stages of avascular necrosis may benefit from more conservative treatment, while later stages may require surgery.
Medications
Nonsteroidal anti-inflammatory drugs (NSAIDs) can relieve pain caused by avascular necrosis. Examples of NSAIDs include aspirin and ibuprofen.
Bisphosphonate medications, such as alendronate (Fosamax), also may play a role in the treatment of this disease. In some studies of people with avascular necrosis affecting the ball portion of the hip joint (femoral head), bisphosphonates appeared to slow the progression of the disease and reduce pain. More research is needed before doctors can make a strong recommendation about the use of bisphosphonates in the treatment of avascular necrosis.
Rest
Reducing the amount of weight and stress on your affected bone may slow the damage of avascular necrosis. You may need to restrict the amount of physical activity you engage in. In the case of hip or knee avascular necrosis, you may need to use crutches to keep weight off your joint for one to three months.
Exercises
Certain exercises may help you maintain or improve the range of motion in your joint. A physical therapist can choose exercises specifically for your condition and teach you how to do them.
Electrical stimulation
Electrical currents may encourage your body to grow new bone to replace the area damaged by avascular necrosis. Electrical stimulation can be used during surgery and applied directly to the damaged area. Or it can be administered through electrodes attached to your skin.
Surgery
Surgical procedures for people with avascular necrosis include:
* Core decompression. In this operation, your surgeon removes part of the inner layer of your bone. This relieves pressure within your bone, reducing your pain. The extra space allows your bone to form new blood vessels and stimulate the production of new bone. Core decompression works best in people with early-stage avascular necrosis.
* Bone reshaping (osteotomy). This procedure reshapes the bone to reduce the amount of stress placed on the area affected by avascular necrosis. Osteotomy is usually used in people with advanced avascular necrosis. Recovery may take up to a year.
* Bone transplant (graft). During this procedure, your surgeon takes healthy bone from another part of your body and implants it into the area affected by avascular necrosis. Sometimes this is done in conjunction with a core decompression. Recovery may take six to 12 months. More studies are needed to establish the effectives of this treatment for avascular necrosis.
* Joint replacement. If your diseased bone has already collapsed or other treatment options aren't helping, you may need joint replacement surgery (arthroplasty). Joint replacement surgery replaces your joint with an artificial one. It requires months of recovery, including time spent learning to use your new joint.
Because avascular necrosis is a progressive disease, your doctor may start with conservative treatments. As those measures, such as rest, become less effective, you may move to more aggressive treatments, such as surgery.
Friday, July 18, 2008
Thursday, July 17, 2008
Butterfly Walk August 10...press release
July 17, 2008 Media contact: Laura Drouillard
E-mail: ljdrou@umich.edu
Phone: 734-764-2220
Butterfly walk to raise funds for lupus research
Aug. 10 family event will benefit Amster Lupus Research Fund
1 of 2
Learn more:
Amster Lupus Butterfly Walk
July 17, 2008 Media contact: Laura Drouillard
E-mail: ljdrou@umich.edu
Phone: 734-764-2220
Butterfly walk to raise funds for lupus research
ANN ARBOR, MI — Just 11 years after her mother had died from complications related to lupus, Angela Madaras received a diagnosis of the same disease. She was only a senior in high school at the time. After being rushed to a North Carolina hospital for a life-threatening episode involving kidney failure, hepatitis, seizures, pneumonia and vasculitis that put her in a coma for a week, she decided to come to the University of Michigan Health System for treatment.
Twenty-three years after her initial diagnosis, Madaras now resides in Ann Arbor, where she participates in research studies at U-M’s Lupus Clinic. While she still experiences symptoms of lupus and the long-term effects of treatments, Madaras says that the care she has received from U-M has given her the strength to give back to others who have been affected by the disease; she has made it her personal mission to contribute to the search for a cure.
“It has been 50 years since the FDA [Food and Drug Administration] approved a new treatment specifically for lupus. By volunteering and participating in trials, research studies and advocating that Congress pass certain legislation, I see my experience as a way to change the future for others,” Madaras explains.
One way that Madaras feels she is making a difference is through her participation in the annual Amster Lupus Butterfly Walk. The event—which was created in 2002 by longtime friends Linda LeFevre, a lupus patient at U-M, and Renee McKay, who has a sister with lupus— donates all of its proceeds to the Amster Lupus Research Fund. The fund, started by Herbert and Carol Amster, financially supports clinical research for lupus. To date, this community event has raised more than $150,000.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect every major organ system— including the kidneys, heart, brain, musculoskeletal, lungs and skin— among males and females of all ages and ethnic origins. Because lupus is an autoimmune disorder, the immune system mistakenly attacks the body’s own tissue and organs. Today, lupus affects more than one million people in the United States— including more than 9,000 people in Michigan alone. The exact cause of lupus is not known, and a cure has not been found.
The two-mile Amster Lupus Butterfly Walk will be held on Sunday, Aug. 10 at Civic Center Park, on Hall Road in Woodhaven in Wayne County. Registration begins at 10 a.m., and the walk will start at 11:30 a.m., rain or shine. A pancake breakfast will be held during the registration time. Registration is $15 per person or $50 for a team of four members. Team Sponsorship and Corporate Sponsorship opportunities are available until Aug. 5.
For more information about lupus, event registration or how to donate, call (734) 671-2367 or (248) 582-2727, e-mail butterflies@wowway.com or visit www.amsterlupus.org.
To learn more about the Lupus Program at U-M, please visit:
http://www.med.umich.edu/lupus/index.htm
To make a contribution:
Please mail your contributions (checks payable to the University of Michigan with “Amster Lupus Butterfly Walk” in memo line) to:
National City Bank
Re: Routing #RJ2SC9
400 West Fourth Street
Royal Oak, MI 48067
rivacy Statement
E-mail: ljdrou@umich.edu
Phone: 734-764-2220
Butterfly walk to raise funds for lupus research
Aug. 10 family event will benefit Amster Lupus Research Fund
1 of 2
Learn more:
Amster Lupus Butterfly Walk
July 17, 2008 Media contact: Laura Drouillard
E-mail: ljdrou@umich.edu
Phone: 734-764-2220
Butterfly walk to raise funds for lupus research
ANN ARBOR, MI — Just 11 years after her mother had died from complications related to lupus, Angela Madaras received a diagnosis of the same disease. She was only a senior in high school at the time. After being rushed to a North Carolina hospital for a life-threatening episode involving kidney failure, hepatitis, seizures, pneumonia and vasculitis that put her in a coma for a week, she decided to come to the University of Michigan Health System for treatment.
Twenty-three years after her initial diagnosis, Madaras now resides in Ann Arbor, where she participates in research studies at U-M’s Lupus Clinic. While she still experiences symptoms of lupus and the long-term effects of treatments, Madaras says that the care she has received from U-M has given her the strength to give back to others who have been affected by the disease; she has made it her personal mission to contribute to the search for a cure.
“It has been 50 years since the FDA [Food and Drug Administration] approved a new treatment specifically for lupus. By volunteering and participating in trials, research studies and advocating that Congress pass certain legislation, I see my experience as a way to change the future for others,” Madaras explains.
One way that Madaras feels she is making a difference is through her participation in the annual Amster Lupus Butterfly Walk. The event—which was created in 2002 by longtime friends Linda LeFevre, a lupus patient at U-M, and Renee McKay, who has a sister with lupus— donates all of its proceeds to the Amster Lupus Research Fund. The fund, started by Herbert and Carol Amster, financially supports clinical research for lupus. To date, this community event has raised more than $150,000.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect every major organ system— including the kidneys, heart, brain, musculoskeletal, lungs and skin— among males and females of all ages and ethnic origins. Because lupus is an autoimmune disorder, the immune system mistakenly attacks the body’s own tissue and organs. Today, lupus affects more than one million people in the United States— including more than 9,000 people in Michigan alone. The exact cause of lupus is not known, and a cure has not been found.
The two-mile Amster Lupus Butterfly Walk will be held on Sunday, Aug. 10 at Civic Center Park, on Hall Road in Woodhaven in Wayne County. Registration begins at 10 a.m., and the walk will start at 11:30 a.m., rain or shine. A pancake breakfast will be held during the registration time. Registration is $15 per person or $50 for a team of four members. Team Sponsorship and Corporate Sponsorship opportunities are available until Aug. 5.
For more information about lupus, event registration or how to donate, call (734) 671-2367 or (248) 582-2727, e-mail butterflies@wowway.com or visit www.amsterlupus.org.
To learn more about the Lupus Program at U-M, please visit:
http://www.med.umich.edu/lupus/index.htm
To make a contribution:
Please mail your contributions (checks payable to the University of Michigan with “Amster Lupus Butterfly Walk” in memo line) to:
National City Bank
Re: Routing #RJ2SC9
400 West Fourth Street
Royal Oak, MI 48067
rivacy Statement
Tuesday, June 17, 2008
Flying Again?
My friend took me up for a flight in his four seater, Tiger. It was great. I had so much fun it was wonderful seeing the area from the air. I miss hang gliding and feel so blessed to have had that gift of flight. The mountains are lush a green and I was pleasantly surprised it did not look as developed as I imagined. It seems most of the growth is downtown. Urban sprawl might be quelled for a little while but it is on the rise. It is always refreshing to gain an eagles eye and gain fresh perspective.
I had a great chat with my grandmother the other day who is amazing in her late eighties, Popa 90, and they both still drive and she even goes gambling with friends. I was laughing so hard at her stories which are pretty amazing. She was a Rosie Riveter during the war. My grandfather was on a base in California and when she was 18, before they married, her and a friend took a train across the country from Detroit to California to visit their fellows. The friend stayed and my grandmother trained back herself. What is so funny is her friend ended up throwing my grandmother a wedding shower but instead of the typical she threw a "Mourning" party like a funeral. They had black decor with hanky's for crying and all the fun quarks that accompany a wake. How funny !!! I laughed so hard. It was all in good clean fun. This woman ended up writing many books on rebirth and reincarnation and was on Oprah years back. I read her one book "Return To Marlboro" so many years ago I can barely remember, but my grandmother can remember all these details. She has macular degeneration, diabetes, heart issues, arthritis and high BP which does not seem to take anything away from her humor or spirit. Her last words on the phone before "I love you" was "Keep your finger in the dike", from an old Danish story. I almost peed in my pants. I admire her spirit so much. She carries herself with grace and character we usually forget about in todays society. I like that Moxy.
On a highly personal note (children or prudes step away from the computer)..........hey all you married women; have you had a time keeping the romance alive? Who has not right? Douglas and I have a fabulously beautiful relationship with more laughs than any couple I know, but when I was so sick, it was hard to get it up, so to speak. I mean that on my end with all the meds and surgeries I was not thinking about sex. I slept, ate, slept and messed in the garden. Doug took care of me like a parent would a child with great care which is a great challenge for a lover. Lately that has changed. I am not sure what changed but I can say that opening dialog and being really honest can take you places you never dreamed. It is not about the sex as much as the deepening of a relationship after many years of living with someone and spending so much time together. We know each other inside and out farts and all. For most long term relationships, over ten years anyway, the date nights disappear into movies on DVD with popcorn and PJ's. Champagne turns into boxed wine. A real intimate moment is just that; a moment. The long dates of seduction and foreplay start with and end with a back rub and ben gay. It is not easy keeping it sexy, but we have been able to do so in the midst of all life's challenges. This past reawakening of desire and passion has brought us into a new level of intimacy beyond what we dreamed. I knew we had the best relationship we could ever hope for, but then it keeps getting better. I am reminded that we are blessed. If the scientists call passion a chemical reaction which creates oxytocin and fermones(whatever they are called) then they are missing the point. Love and intimacy are combined to create a lasting bond of trust and honest communication which is the best orgasm truly. Lust is there for certain procreation but when it wears down over the years what kicks is in is even hotter. I am with the sexiest man alive and I know it. That along with the entire package is sexy just as it is. More tips if you are open......not online.
I had a great chat with my grandmother the other day who is amazing in her late eighties, Popa 90, and they both still drive and she even goes gambling with friends. I was laughing so hard at her stories which are pretty amazing. She was a Rosie Riveter during the war. My grandfather was on a base in California and when she was 18, before they married, her and a friend took a train across the country from Detroit to California to visit their fellows. The friend stayed and my grandmother trained back herself. What is so funny is her friend ended up throwing my grandmother a wedding shower but instead of the typical she threw a "Mourning" party like a funeral. They had black decor with hanky's for crying and all the fun quarks that accompany a wake. How funny !!! I laughed so hard. It was all in good clean fun. This woman ended up writing many books on rebirth and reincarnation and was on Oprah years back. I read her one book "Return To Marlboro" so many years ago I can barely remember, but my grandmother can remember all these details. She has macular degeneration, diabetes, heart issues, arthritis and high BP which does not seem to take anything away from her humor or spirit. Her last words on the phone before "I love you" was "Keep your finger in the dike", from an old Danish story. I almost peed in my pants. I admire her spirit so much. She carries herself with grace and character we usually forget about in todays society. I like that Moxy.
On a highly personal note (children or prudes step away from the computer)..........hey all you married women; have you had a time keeping the romance alive? Who has not right? Douglas and I have a fabulously beautiful relationship with more laughs than any couple I know, but when I was so sick, it was hard to get it up, so to speak. I mean that on my end with all the meds and surgeries I was not thinking about sex. I slept, ate, slept and messed in the garden. Doug took care of me like a parent would a child with great care which is a great challenge for a lover. Lately that has changed. I am not sure what changed but I can say that opening dialog and being really honest can take you places you never dreamed. It is not about the sex as much as the deepening of a relationship after many years of living with someone and spending so much time together. We know each other inside and out farts and all. For most long term relationships, over ten years anyway, the date nights disappear into movies on DVD with popcorn and PJ's. Champagne turns into boxed wine. A real intimate moment is just that; a moment. The long dates of seduction and foreplay start with and end with a back rub and ben gay. It is not easy keeping it sexy, but we have been able to do so in the midst of all life's challenges. This past reawakening of desire and passion has brought us into a new level of intimacy beyond what we dreamed. I knew we had the best relationship we could ever hope for, but then it keeps getting better. I am reminded that we are blessed. If the scientists call passion a chemical reaction which creates oxytocin and fermones(whatever they are called) then they are missing the point. Love and intimacy are combined to create a lasting bond of trust and honest communication which is the best orgasm truly. Lust is there for certain procreation but when it wears down over the years what kicks is in is even hotter. I am with the sexiest man alive and I know it. That along with the entire package is sexy just as it is. More tips if you are open......not online.
Monday, June 9, 2008
OK still working on book....coffee talk
I finally see that writing a book is a healing journey that takes many twists and turns into the depths of ones soul. All the hidden treasures and ghosts come screaming out of the closet all at once or in little subtle pieces. Yesterday I took my Sunday afternoon chill out day. From 11:00-4:00 I worked on computer and from 4:00-7:00 I watched Food Channel shows I love, stayed off my sore legs and sipped on some chilled white wine, of course wine goes with food. Then I cooked dinner and watched last half of a movie while Douglas was finishing a long seemingly frustrating day on the computer working. After dinner we sat there watching the nature channel on a Peruvian Tribe and their rites of passage for men when the phone rang. It was Doug's phone and an old friend on the other end inviting he and a few other old dear friends to a lunch, which they do every few years when all are in Asheville. Their connection is deep and spiritually based back during a time before I met Douglas. I was also friends with two of them before I met Douglas as well, but not as close as he was so I would understand why it is important for them to have quality time.
We all have those connections with people in our lives who are like family and during pivotal times which are life changing, these bonds are made that much stronger. I would say this meets those qualifications for Douglas and I totally respect that. I have never been invited to join them though, unless I ask Douglas if I can come, he says yes, but I would not go anyway. It's the ego thing. That little girl inside me just likes being counted or considered and liked. The only girl on the playground playing alone during all those years we moved (just about every two-three years and usually right in the middle of the school year) was starting to pop out and was saying "Hey can I come? am I invited? Someone play with me fast". That's seemingly irrational but hidden deep down inside each and every one of us. Think of being bullied or having kids pick on you when you were young because your name was strange or your teeth were messed up? Or your glasses too big? You know what I am talking about. If you don't then you were either perfect, enlightened or the bully. It's a human thing to want to be part of the group, liked, loved and accepted.Most importantly "Understood". I think part of being in a good relationship is being able to express that need even if it seems childish.
The human psyche can be very tricky and will sneak up on you when you least expect it. Hormones? "Don't go there". It is more about peeling the onion and getting to the core of an old hurt possibly from early childhood or sooner? Douglas is a very sensitive man and loves me deeply, so it does not have to do with him directly. I I just want to be included and understood during those moments of "Poor me". Seems so tiny but we are not tiny creatures are we? No ! we are very complicated and even highly emotional at times. Our air waves reflect all the drama of super stars and politicians. I think we love seeing others emotional pain on some level because it makes us feel better about ourselves and we can jump to judge them instead of getting the tree out of our own eye. I want to live in a world where we try to find out "why?" instead of jumping to judge or turning the other direction? Why do we judge, fight,go to war,get jealous, feel superior,abuse people, cheat, lie, steal, have addictions, get angry, commit suicide, throw pity parties, have road rage, act out in any way other than that of love and compassion? If we know the answer to our inner pains we might find compassion, only then can we learn to empathize? Empathy can heal any wound but compassion has to be there to open the door to understanding with no judgment. It is a tall order we must learn in order to heal this world, ourselves, others and the planet. So it is much deeper when truly analyzed. I do think it takes the feminine touch to turn the tide. Our leaders could learn from the mothers and grandmothers.
The ego is the voice behind it all. It is afraid to be hurt, abandoned, unloved, disliked or damaged in any way. So we fly off the handle at a little things when the real big sore is still buried deep inside and bruised. The only way to do that is to keep peeling and keep it real. I chose to heal my inner scars but not at the expense of my mate, friends, strangers and family. No, I want to take the high ground, but still feel safe to express my feelings and be heard without being dismissed. I guess I have lots of work to do. Another day. Off to work on other more timely matters of a Monday. Oh, and men could learn how to listen better too with out trying to fix it or get frustrated with us emotional, powerful females.
We all have those connections with people in our lives who are like family and during pivotal times which are life changing, these bonds are made that much stronger. I would say this meets those qualifications for Douglas and I totally respect that. I have never been invited to join them though, unless I ask Douglas if I can come, he says yes, but I would not go anyway. It's the ego thing. That little girl inside me just likes being counted or considered and liked. The only girl on the playground playing alone during all those years we moved (just about every two-three years and usually right in the middle of the school year) was starting to pop out and was saying "Hey can I come? am I invited? Someone play with me fast". That's seemingly irrational but hidden deep down inside each and every one of us. Think of being bullied or having kids pick on you when you were young because your name was strange or your teeth were messed up? Or your glasses too big? You know what I am talking about. If you don't then you were either perfect, enlightened or the bully. It's a human thing to want to be part of the group, liked, loved and accepted.Most importantly "Understood". I think part of being in a good relationship is being able to express that need even if it seems childish.
The human psyche can be very tricky and will sneak up on you when you least expect it. Hormones? "Don't go there". It is more about peeling the onion and getting to the core of an old hurt possibly from early childhood or sooner? Douglas is a very sensitive man and loves me deeply, so it does not have to do with him directly. I I just want to be included and understood during those moments of "Poor me". Seems so tiny but we are not tiny creatures are we? No ! we are very complicated and even highly emotional at times. Our air waves reflect all the drama of super stars and politicians. I think we love seeing others emotional pain on some level because it makes us feel better about ourselves and we can jump to judge them instead of getting the tree out of our own eye. I want to live in a world where we try to find out "why?" instead of jumping to judge or turning the other direction? Why do we judge, fight,go to war,get jealous, feel superior,abuse people, cheat, lie, steal, have addictions, get angry, commit suicide, throw pity parties, have road rage, act out in any way other than that of love and compassion? If we know the answer to our inner pains we might find compassion, only then can we learn to empathize? Empathy can heal any wound but compassion has to be there to open the door to understanding with no judgment. It is a tall order we must learn in order to heal this world, ourselves, others and the planet. So it is much deeper when truly analyzed. I do think it takes the feminine touch to turn the tide. Our leaders could learn from the mothers and grandmothers.
The ego is the voice behind it all. It is afraid to be hurt, abandoned, unloved, disliked or damaged in any way. So we fly off the handle at a little things when the real big sore is still buried deep inside and bruised. The only way to do that is to keep peeling and keep it real. I chose to heal my inner scars but not at the expense of my mate, friends, strangers and family. No, I want to take the high ground, but still feel safe to express my feelings and be heard without being dismissed. I guess I have lots of work to do. Another day. Off to work on other more timely matters of a Monday. Oh, and men could learn how to listen better too with out trying to fix it or get frustrated with us emotional, powerful females.
Wednesday, June 4, 2008
In Honor of My Mother
Today is my moms birthday. She died in 1975 with lupus complications. It is always a challenging day even if I do not remember until the end of the day, I somehow usually feel it in some way or another. Today started out great then I felt stressed by many little things which normally would not get to me. It is one of those days. My sister called me to remind me and to do our ritual 6:00 toast in honor of her. I was so young when she died it feels like a whole life away yet I carry her in my heart everywhere I go every day. I do the work I do with lupus fund raising and awareness for her and others alike. I guess you can say I carry her hope that one day we find a cure and the suffering will end for millions who have auto immune disorders. I sure do miss her though. I remember her constant smile, big blue eyes and soft blond hair, or wig, depending on the time. I can see her walking on the beach in a caftan or Turkish robe and floppy hat looking very chic. Her laugh was infectious and everyone adored her as they should. What an uplifting spirit she was to so many. Amazing to me how those who seem to have the most challenges somehow find a way to lift others up by their good nature, a sweet smile and uplifting attitude. She was one of those people and I will aspire to that as a human all my life. What a challenge. One thing I know for sure is that she was happy and at peace. It is great comfort. "I love you mom".
On a light note........I am gearing up for posting a funny version of my memoir. The first chapter will explain and set up a wild ride of a life. What fun to remember and document ones life. If it never gets published or read at least I will have put it in print and had a good laugh or two and some tears as well. It saves a lot on therapy too. The end result is good as you know. There sure have been a cast of characters. The book is more about the others who helped shape my life than me. Yes that may me you.........
Peace and Health
On a light note........I am gearing up for posting a funny version of my memoir. The first chapter will explain and set up a wild ride of a life. What fun to remember and document ones life. If it never gets published or read at least I will have put it in print and had a good laugh or two and some tears as well. It saves a lot on therapy too. The end result is good as you know. There sure have been a cast of characters. The book is more about the others who helped shape my life than me. Yes that may me you.........
Peace and Health
Monday, June 2, 2008
"Roller Coaster.............Come down"
For those of you who remember the 70's hit from "Kasey and the Sunshine Band" called "Roller Coaster" you will relate to how I feel. I am on steroids once again and flying high on the roller coaster of manic mania. It is truly amazing how this medication can mask the symptoms of a disease and even put it into remission while at the same time create havoc in your body, mind and emotions. Emotionally I am great: that is to say "manic" and happy with energy and lots of mental action in my little brain.........but then I realize I am like a high energy "bunny" with OCD and ADD on speed. I can hardly practice meditation or read a sentence because my mind is in 100 places all at once. The upside, and there is always an upside, is that I get a lot more done while multi tasking and feel pretty damn good. Chatty Kathy comes out to play. I can relate to why I was so hyper active in my earlier years when high doses of steroids were a daily event. I know my sister Martha and old best friend/room-mate Lisa will understand totally because I drove them crazy. The downside is that it is hard to get to sleep or stop the mental chatter, I talk to myself with out realizing it and sometimes it can make me cranky or emotional(not now thank goodness). Douglas came in the kitchen where I was alone cooking and asked who I was talking to.......That's not good. my answer was obvious and "YES" I do answer. That being said it is a wild ride and always interesting.
So "word"...........of caution; when around me now please understand I am slightly off balance and a little like a young woman in her 20's. It will go away as I taper down and eventually get off these roids, But while I am on this wave I will ride it as long as I can because being out of bed with energy and youthfulness feels good, even if I am a little nuts.
So "word"...........of caution; when around me now please understand I am slightly off balance and a little like a young woman in her 20's. It will go away as I taper down and eventually get off these roids, But while I am on this wave I will ride it as long as I can because being out of bed with energy and youthfulness feels good, even if I am a little nuts.
Saturday, May 24, 2008
OK I was Blue.....get over it.
Sometimes when we are blue we feel we need to hide it or share it with the world. Mostly I hide it but yesterday I shared it. I feel OK with that. For anyone uncomfortable; "get over it". You try to live with a chronic illness and pain and see how you like it. Really though I do feel better and it helps to vent. I know too many people who bottle up emotions and I see how they come bursting out in negative and self destructive ways. So free yourself and feel what you feel, and express it somehow with out judgment. Blogs are great ways, but know people are watching.
I have a funny question. Do you woman of my age and older have very close veins? Otherwise known as varicose? Do they bug you? Hurt? Or are they small spider ones which simply reflect your maturity, wisdom and heritage? I had a friend once send me a flyer for a Dr. who removes them and then I read Dr.'s report stating I had them. I asked my husband and another friend and they could not even see them. So I figured it could be a vanity issue. maybe people see things if they are threatening to their own self image? maybe I just focus on what is important or... are they a real health issue? NO........Not if they are tiny, microscopic and almost un-noticeable. Like crows feet, no one notices unless it is an issue for them. Age should be celebrated. Now if you have painful, bulging veins which need to be removed for health reasons and pain; go for it. My X had them so bad he looked like those steroid guys all pumped up and it was a medical issue. Shows those age marks with pride is my motto. Hell, I still have acne so what do I have to complain about.
So I guess I am back to my practical and slightly humorous state for the moment. Next entry is the beginning of my memoirs. After losing them on computer I decided to re-write with a humorous twist. Things I felt should be secret I no longer care to hide. The gloves are off. No names mentioned but stories will be told. Mine. Let me know if you want left out. I may or may not. HEEEEEE. Just kidding. I respect peoples right to privacy and it might not be written as real but as closely based on reality.
Peace out.....Word.......Love
I have a funny question. Do you woman of my age and older have very close veins? Otherwise known as varicose? Do they bug you? Hurt? Or are they small spider ones which simply reflect your maturity, wisdom and heritage? I had a friend once send me a flyer for a Dr. who removes them and then I read Dr.'s report stating I had them. I asked my husband and another friend and they could not even see them. So I figured it could be a vanity issue. maybe people see things if they are threatening to their own self image? maybe I just focus on what is important or... are they a real health issue? NO........Not if they are tiny, microscopic and almost un-noticeable. Like crows feet, no one notices unless it is an issue for them. Age should be celebrated. Now if you have painful, bulging veins which need to be removed for health reasons and pain; go for it. My X had them so bad he looked like those steroid guys all pumped up and it was a medical issue. Shows those age marks with pride is my motto. Hell, I still have acne so what do I have to complain about.
So I guess I am back to my practical and slightly humorous state for the moment. Next entry is the beginning of my memoirs. After losing them on computer I decided to re-write with a humorous twist. Things I felt should be secret I no longer care to hide. The gloves are off. No names mentioned but stories will be told. Mine. Let me know if you want left out. I may or may not. HEEEEEE. Just kidding. I respect peoples right to privacy and it might not be written as real but as closely based on reality.
Peace out.....Word.......Love
Friday, May 23, 2008
ups and downs...whining
Today I want and need to bitch and whine. I have spent two days in bed this past week and feeling very weak,tired and have pain which is a level 5 but for most others it would be much higher. When one is in chronic pain the number system of grading pain levels does not apply, which sends a mixed message to the Dr.'s. They hear a level 3-5 on the particular day you are in clinic and consider it "mild", but what they do not take into consideration is that the pain can go from 3-8 in an hour and when one has a higher tolerance this number is irrelevant. I read the Dr.'s reports and they tell me the lupus is inactive, and thanks to the daily dose of toxic meds which control it, I am "basically" symptom free. What they do not take into effect is the damage and activity I feel no matter what the lab tests show. This has been proven. There are times when labs look terrible but we patients feel great and vise versa. Most days I see our Dr. I do feel OK and I put on my happy face so they do not think I am weak or a whiner. That really irritates people.
So why do I want to bitch and complain? I feel it is harder emotionally with the lupus being virtually inactive, while on a ton of drugs, than it is to be in a full fledged raging flare. At least when I am in a bad flare I can validate how I feel. When I am in limbo and the meds are keeping the activity generally low I feel that Dr.'s and family-friends assume I am well and therefore can go back to normal activity and that all is good. This is not true. Plus the damage that has been caused to bones, skin, kidneys and other organ systems is already done. There is nothing to be done about that. I can not take pain meds, which would make life so much easier, and on the occasion I bite the bullet and do take pain meds I suffer through the hellish side effects, but also realize what it is like to be virtually pain free. I guess even I do not realize how much pain I feel until I numb it. But what is more frustrating is how, even experienced Dr.s, will say I look so healthy and give me a clean bill of health and call my pain or symptoms "Mild"....Mild to who? I have a friend who is a Dr., not practicing, and has lupus. She did not understand what patients went through until she had the disease herself. What a teacher she has been. She knows that Dr.'s really can never fully understand what we patients feel. It may seem mild in comparison to life threatening symptoms, but it is not mild to spend two hours napping daily and at least two days a week in bed, having sleepless nights due to pain, feeling so tired at times I can not walk, all the nasty side effects and damage from toxic drugs and so on. The emotional toll of being in this limbo is worse than facing death. The ironic part is that I want to be seen as healthy but I want my Dr.'s to truly understand and write it down as it is not just report that day I see them but the entire picture. Take the time to acknowledge spikes of pain up to 8-10, sleeplessness, weakness, pain upon doing anything physical, bone decay and pain as a result, missing out on much of life's experiences much of the time and trying to look good and healthy because that is what our society expects. We want and need to be heard and understood not blown off. I have great Dr.'s who I respect and care for, but I still do not feel they understand. They are also victims of insurance and cost effective medicine. They have fifteen minutes to spend with each patient. That is absurd!!!!
I want to be healthy and positive but I also want people to know what I go through so they can empathize a bit. Imagine having the flu your entire life with arthritis and bone loss. Imagine wanting to sleep and forcing yourself to get out in the world with a smile to be a positive role model and to be "normal". Just imagine for a moment then tell me if it is "Mild".
Thanks for listening......whoever reads this. No worries I will be happy and feeling good soon, just let me feel it.
So why do I want to bitch and complain? I feel it is harder emotionally with the lupus being virtually inactive, while on a ton of drugs, than it is to be in a full fledged raging flare. At least when I am in a bad flare I can validate how I feel. When I am in limbo and the meds are keeping the activity generally low I feel that Dr.'s and family-friends assume I am well and therefore can go back to normal activity and that all is good. This is not true. Plus the damage that has been caused to bones, skin, kidneys and other organ systems is already done. There is nothing to be done about that. I can not take pain meds, which would make life so much easier, and on the occasion I bite the bullet and do take pain meds I suffer through the hellish side effects, but also realize what it is like to be virtually pain free. I guess even I do not realize how much pain I feel until I numb it. But what is more frustrating is how, even experienced Dr.s, will say I look so healthy and give me a clean bill of health and call my pain or symptoms "Mild"....Mild to who? I have a friend who is a Dr., not practicing, and has lupus. She did not understand what patients went through until she had the disease herself. What a teacher she has been. She knows that Dr.'s really can never fully understand what we patients feel. It may seem mild in comparison to life threatening symptoms, but it is not mild to spend two hours napping daily and at least two days a week in bed, having sleepless nights due to pain, feeling so tired at times I can not walk, all the nasty side effects and damage from toxic drugs and so on. The emotional toll of being in this limbo is worse than facing death. The ironic part is that I want to be seen as healthy but I want my Dr.'s to truly understand and write it down as it is not just report that day I see them but the entire picture. Take the time to acknowledge spikes of pain up to 8-10, sleeplessness, weakness, pain upon doing anything physical, bone decay and pain as a result, missing out on much of life's experiences much of the time and trying to look good and healthy because that is what our society expects. We want and need to be heard and understood not blown off. I have great Dr.'s who I respect and care for, but I still do not feel they understand. They are also victims of insurance and cost effective medicine. They have fifteen minutes to spend with each patient. That is absurd!!!!
I want to be healthy and positive but I also want people to know what I go through so they can empathize a bit. Imagine having the flu your entire life with arthritis and bone loss. Imagine wanting to sleep and forcing yourself to get out in the world with a smile to be a positive role model and to be "normal". Just imagine for a moment then tell me if it is "Mild".
Thanks for listening......whoever reads this. No worries I will be happy and feeling good soon, just let me feel it.
Sunday, May 18, 2008
writing again
Yes I have been on a long sabbatical from writing after losing much of my "book' after a couple computer crashes while backing up memory which torqued out the back up drive as well. Online back up works well too but I must admit to still being bad at it. Contrary to popular belief I am not a geek when it comes to computers. I now write most of my important info online and/or back up on paper. Plus one must feel the words dripping off the finger tips like melted ice cream at a July pic nic. I have not had that feeling much lately, perhaps due to all the changes with living in NC temporarily, not being out in our garden and nature or swimming in the lake for the summer. My clock of routine is off balance. My notes and "stuff" is in Michigan.I do see a rebirth for me and I hope you encourage me to write as well.
I work with a "chronic pain and illness" therapist during times I need a little boost. He is great at making everything seem normal and reminding me of my need for perfection in life. "If I will not be perfect then I will not do it". What is that all about? I wonder how many of us underachieve to a degree at some point in our lives when the things we were once great at we no longer find our glory? I was more active, stronger, smarter, more energetic and more creative just three years ago. This is not due to age in total. It has more to do with the cards I have been dealt or picked for myself with lupus, chemo, meds, and bone loss-pain. I see a need to rebirth some of the old "younger me". I am begging to find minuscule pieces of her emerge as if awkwardly cracking out of a hard shell into a new world with memories of youthfulness,energy and zest for life. Shades of her are there lurking in the shadows around corners of cooking,cleaning,shopping,computering,entertaining, advising,advocating,designing,running errands and making all my weekly-monthly appointments around health and wellness. Hell I don't even have pets,kids or Chia pets. When we had Jake dog for 7 years he was a catalyst for me to get out and walk in the woods a few times a day and play toss etc. Now the ball is my hands for me to initiate action. How blessed I am to be able to walk (stumble) and even consider doing the things I now do. Two years ago I did not know if I would have the physical or mental ability to do much of anything. Renting movies and the food channel became my link to the outside world and unreadable pages of scribbled notes are proof of the recipes I pretended to be preparing,books to write,videos I wanted to rent, music to record or documentaries to see. It was like having a stroke. Hard to explain but things were not firing and energy levels were available for survival only. I was there but my body could not completely prove it.
Now is a new day for sure. As I crawl into this new skin I see how it only takes a little initiation and motivation to reach a little farther and dream a little more. That will eventually turn back into action in a healthy way. I might end up in a wheelchair one day but not now !!!!!Perhaps sometimes the little red wagon Douglas bought me will be seen fluttering to the farmer's market either with me towing or sitting on the end being towed. Either way I have a means to move about the planet as I see fit. Hang gliding,motorcycles,heavy farming,extreme dancing,sunning at the beach,hiking a tall mountain and more are memories....and good ones at that, but not my reality for now. I must consider saving what bone I have left for healing at best and maintaining at worst. I truly believe the worst is behind and I am strong as hell for whatever the future holds. Indulge me in the healing and rebirth. If you live close ask me to join you in a class or take a workshop. Invite me to read a book with you or join a club. Show me how to knit and go for a nature walk. I am open and sometimes need a simple invitation. I will tell you of I am not up to it, but the asking makes me feel strong,smart and healthy again.
PS...I joined a local farmers group. Every Thursday they provide fresh-local produce of what is in season. We buy a season (May-October) of shares and enjoy the growth of our hard working farmers in the Asheville area. If you have one in your area I suggest you join. Or if you have enough food from your garden to provide a box a week to a couple families do it. It is a great way to support local economy and organic gardening while avoiding the high costs of having food shipped in from Mexico or China. Helping food kitchens is another way to share the abundance of local farming. Do not forget eggs,dairy,flowers,herbs,honey,maple syrup,cider and meat. When you get involved with local economy you save your community from being a Super Wall-Mart "Ho". Plus it is fun for kids to learn about farming and natural elements in life. If none of the above is an option there must be a farmer's market or local farmer nearby with a little table by their drive with a few tomatoes or peppers sitting in the sun for "donation or contribution". What fun !!!! Right now we have a patio garden with herbs, tomatoes,greens and will ease into more. We could feed ourselves off one small patio. Summer reminds me of summer visits to West va. and of our garden at the farm and cottage up north Michigan. I learned so much form my grandparents about sewing seeds,manure,compost and reaping the benefits. Also about what to eat and not to eat. Hot peppers are not be eaten. My grandpa Gross taught me a tough lesson on that !!!!
I end this session with a happy smile and a restful weekend ready to get back at it in the am. Tonight perhaps I help Doug paint his extra large "Butt Ugly" cigarette butts for an anti litter night at the baseball game next week. He is the butt man.
I work with a "chronic pain and illness" therapist during times I need a little boost. He is great at making everything seem normal and reminding me of my need for perfection in life. "If I will not be perfect then I will not do it". What is that all about? I wonder how many of us underachieve to a degree at some point in our lives when the things we were once great at we no longer find our glory? I was more active, stronger, smarter, more energetic and more creative just three years ago. This is not due to age in total. It has more to do with the cards I have been dealt or picked for myself with lupus, chemo, meds, and bone loss-pain. I see a need to rebirth some of the old "younger me". I am begging to find minuscule pieces of her emerge as if awkwardly cracking out of a hard shell into a new world with memories of youthfulness,energy and zest for life. Shades of her are there lurking in the shadows around corners of cooking,cleaning,shopping,computering,entertaining, advising,advocating,designing,running errands and making all my weekly-monthly appointments around health and wellness. Hell I don't even have pets,kids or Chia pets. When we had Jake dog for 7 years he was a catalyst for me to get out and walk in the woods a few times a day and play toss etc. Now the ball is my hands for me to initiate action. How blessed I am to be able to walk (stumble) and even consider doing the things I now do. Two years ago I did not know if I would have the physical or mental ability to do much of anything. Renting movies and the food channel became my link to the outside world and unreadable pages of scribbled notes are proof of the recipes I pretended to be preparing,books to write,videos I wanted to rent, music to record or documentaries to see. It was like having a stroke. Hard to explain but things were not firing and energy levels were available for survival only. I was there but my body could not completely prove it.
Now is a new day for sure. As I crawl into this new skin I see how it only takes a little initiation and motivation to reach a little farther and dream a little more. That will eventually turn back into action in a healthy way. I might end up in a wheelchair one day but not now !!!!!Perhaps sometimes the little red wagon Douglas bought me will be seen fluttering to the farmer's market either with me towing or sitting on the end being towed. Either way I have a means to move about the planet as I see fit. Hang gliding,motorcycles,heavy farming,extreme dancing,sunning at the beach,hiking a tall mountain and more are memories....and good ones at that, but not my reality for now. I must consider saving what bone I have left for healing at best and maintaining at worst. I truly believe the worst is behind and I am strong as hell for whatever the future holds. Indulge me in the healing and rebirth. If you live close ask me to join you in a class or take a workshop. Invite me to read a book with you or join a club. Show me how to knit and go for a nature walk. I am open and sometimes need a simple invitation. I will tell you of I am not up to it, but the asking makes me feel strong,smart and healthy again.
PS...I joined a local farmers group. Every Thursday they provide fresh-local produce of what is in season. We buy a season (May-October) of shares and enjoy the growth of our hard working farmers in the Asheville area. If you have one in your area I suggest you join. Or if you have enough food from your garden to provide a box a week to a couple families do it. It is a great way to support local economy and organic gardening while avoiding the high costs of having food shipped in from Mexico or China. Helping food kitchens is another way to share the abundance of local farming. Do not forget eggs,dairy,flowers,herbs,honey,maple syrup,cider and meat. When you get involved with local economy you save your community from being a Super Wall-Mart "Ho". Plus it is fun for kids to learn about farming and natural elements in life. If none of the above is an option there must be a farmer's market or local farmer nearby with a little table by their drive with a few tomatoes or peppers sitting in the sun for "donation or contribution". What fun !!!! Right now we have a patio garden with herbs, tomatoes,greens and will ease into more. We could feed ourselves off one small patio. Summer reminds me of summer visits to West va. and of our garden at the farm and cottage up north Michigan. I learned so much form my grandparents about sewing seeds,manure,compost and reaping the benefits. Also about what to eat and not to eat. Hot peppers are not be eaten. My grandpa Gross taught me a tough lesson on that !!!!
I end this session with a happy smile and a restful weekend ready to get back at it in the am. Tonight perhaps I help Doug paint his extra large "Butt Ugly" cigarette butts for an anti litter night at the baseball game next week. He is the butt man.
Tuesday, May 13, 2008
Feeling Again........
Feeling is a strange thing. Sometimes I numb myself from feeling those things which are too painful: Aches and pains in bones, joints, muscles, heart and soul. I want to avoid anything unpleasant and seek all sorts of ways to avoid the cold hard realities of life. I do not watch TV news because it too depressing to watch our society slip down the drain. I try to read world news and then I get sad and angry because of all the pain in the world. I then meditate, eat, sleep, drink wine, snuggle with my love, day dream, read a book, watch a movie, talk on the phone and whatever one does to avoid being really still in the moment and allow whatever feelings are present.Meditation does this but sometimes I am meditating for world peace or healing as opposed to truly "feeling". This takes much practice. The truth is I am numbing with each and every action other than being completely present with whatever is at that moment. I have been trying something new for the past few weeks.....I call it "feeling It". Whatever the "it" is. If I see something sad about Myanmar, Iraq or Africa I cry. If I have a bad pain day I lay in bed and allow myself to truly feel every wrenching sensation as if I were going into the eye of a tornado. When I want to express something uncomfortable or think about an event I would rather forget I go even deeper into it. What does this mean? It means that after years of being so called "conscious and "spiritual" I realized I was numbing and putting on the happy face us woman especially tend to wear so often. I guess I am at that age when feelings and emotions are hard to deny or push down and the sensor button is worn thin with age and experience.
I remember watching my grandmother go through her change of life times with the utmost feeling and courage. She dared to say the unspeakable. I can remember being mortified when she would tell a waitress she was not doing a good job or make an off comment about a woman wearing too little in all the wrong places. Then I sadly have memories of her honesty with us "Damn Kids" and how at a very green young age, tender and raw, her words could bite. But now I am older and wiser. I see the importance of feeling and being honest with that feeling or desire or thought. Speak the truth. Tell it like it is. Be your own barometer. Then sit back and truly let the pressure dissolve inside your weary bones. The freedom that comes with age is that it is all good as long as we allow ourselves to be vulnerable and feel whatever we need to experience. Once the raw emotion passes and the pain subsides I get a smile on my naive face which lets me know I know nothing yet FEEL everything. This is a huge relief. In a weird way it is a pain blocker because the pain is there to tell us something if only we take the time to hear then it subsides like a needy dog desiring an ounce of attention. When we do not listen it gets louder and stronger. Why wait??? I say to myself. Life is too short and sweet. Taste the fruit and allow the emotions to run over your mind, lips and body in waves of reality, tempering all of life's trials and tribulations back to the stillness in our souls. That is true wisdom to me. Denial is just a river somewhere in us all which is ready to be unleashed and free.
I remember watching my grandmother go through her change of life times with the utmost feeling and courage. She dared to say the unspeakable. I can remember being mortified when she would tell a waitress she was not doing a good job or make an off comment about a woman wearing too little in all the wrong places. Then I sadly have memories of her honesty with us "Damn Kids" and how at a very green young age, tender and raw, her words could bite. But now I am older and wiser. I see the importance of feeling and being honest with that feeling or desire or thought. Speak the truth. Tell it like it is. Be your own barometer. Then sit back and truly let the pressure dissolve inside your weary bones. The freedom that comes with age is that it is all good as long as we allow ourselves to be vulnerable and feel whatever we need to experience. Once the raw emotion passes and the pain subsides I get a smile on my naive face which lets me know I know nothing yet FEEL everything. This is a huge relief. In a weird way it is a pain blocker because the pain is there to tell us something if only we take the time to hear then it subsides like a needy dog desiring an ounce of attention. When we do not listen it gets louder and stronger. Why wait??? I say to myself. Life is too short and sweet. Taste the fruit and allow the emotions to run over your mind, lips and body in waves of reality, tempering all of life's trials and tribulations back to the stillness in our souls. That is true wisdom to me. Denial is just a river somewhere in us all which is ready to be unleashed and free.
Friday, March 28, 2008
Miracles Do Happen Every Moment
This week I found out that after almost 25 years of corticosteroid use due to Lupus, I actually have functioning Adrenal glands, which are responsible for producing around 8 mg of cortisol per day. There are varying beliefs on the correct amount, but I am proud to say mine are fully functioning, which means I can get off steroids. It will take a month to taper off. I will still remain on the CellCept (immunosuppressive-"chemo") daily along with natural, western meds., herbs and supplements. This is great news for my bones, vascular system, heart etc. I was told it is very very rare for adrenals to function after years on steroids. Also my Thyroid is functioning and Kidneys are doing great. I feel like I am moving in a healthier place every day. PT,meditation,light yoga,breath work, awareness, diet, body work, supportive mate and loved ones etc. is all helping so much. Acupuncture is essential. I really have to say: "Positive attitude and support" go a long way. It sometimes takes a team. Thanks team for hanging in there all these years. If we can spread the good news to those who need it most that would be the pay off. I am on a healing path even if the lupus remains I know I have truly healed the inner most me. That is what I carry forward into this journey of life. I am blessed, we are all blessed. The dramas are only temporary and lessen when we shift our awareness and focus on what is good.
That never negates the pain and suffering which exists in the world on so many levels. I have no answer for that except it all points towards growth and experience. Hell is a world we create in our own minds and hearts. I choose to have bliss(heaven) everyday. I chose that for every being.
Good album: Herbie Hancock "Rivers" Joni Mitchell tribute. Heart felt and melodic.
That never negates the pain and suffering which exists in the world on so many levels. I have no answer for that except it all points towards growth and experience. Hell is a world we create in our own minds and hearts. I choose to have bliss(heaven) everyday. I chose that for every being.
Good album: Herbie Hancock "Rivers" Joni Mitchell tribute. Heart felt and melodic.
Saturday, March 22, 2008
Happy Rebirth
Wow how lovely this amazing creature is and how well it grows in it's cocoon only to emerge from a worm to a beautiful butterfly with iridescent wings no artist could replicate. The mighty power and glory of nature is all about this weekend. The rebirth and growth of spring and the easter-equinox-full moon weekend can speak to us on many levels of "coming out" of our hibernation into the green grass and dandelion fields of yellow. Air fresh and clear. Skies blue and white dappled by clouds with clowns faces. How lucky are we?
Enjoy this moment and this weekend with loved ones and friends. Share your love with someone today. I did so here's to my dear friends Carol,Jessie and Sharon, glad to chat with you so far away and damn !!! Sharon, you look 50 fine sister and happy birthday !!! Miss you both very much.
Wednesday, March 19, 2008
Autoimmune Epidemic
http://www.alternet.org/healthwellness/80129
Read this article about a book written by a strong woman who has done her research on why many Americans still know nothing about autoimmune diseases while they remain the strongest category of disabling disorders. The environment is increasingly more toxic which increase the incidence of autoimmune strains disease. It is a good cautionary story of taking good care of yourself and the planet. Also of how the media gives no attention to it because things like cancer, heart disease and erectile dysfunction. Think about it. Have you ever seen a commercial for a new exciting treatment for lupus? Yet it is said that one in nine people have an autoimmune disorder.
What can we do? Write your letters to senate. Write your local media and start learning. There will be an increase in this area if we do not educate people. Knowledge is power and there is much hope if we all do our best to make aware the public on how our environment and bodies are directly related. We each handle it or our bodies express it differently. Some experience depression, cancer, lupus, anger, anxiety, heart attacks or just plain ambivalence. We each have our bucket to carry up hill and that is life. Perhaps you do not have time to help but you can share this link with your friends, especially female loved ones. It can save a life.
On that note I am down with a cold but feeling better and it is a lovely full moon and equinox is close at hand as is Easter. With the change from winter to spring I feel a need to rest and pull in energy before the springs begins to bloom and days are filled with light and endless possibilities of new growth and new life. I find this a metaphor for my own inner growth and that which our world is going through. I think of Tibetan Monks having to fight for their home and right to practice meditation. (China should be ashamed, but then so should our government for forcing businesses to move to China, for borrowing money from them and for making them the super power they have become. ) But if you pay attention to the world, which is crazier everyday( just turn on TV for five minutes and you can see) we are in a new and strange world, but the good news is that people are waking up and taking a stand. This is growth. We can each do our part to shed light on whatever topic(s) is most important to us. We can help our neighbors and donate some time to a good cause. We can write to our politicians about what is important. This is how we change. By having a voice and using it for a positive change with out anger or violence, but with dialog and understanding. A little compassion goes a long way, but our voices can still be loud and strong. Think of a crocus reaching for the sky. It does not ask how or why it just forces itself up naturally. Then it blooms into a lovely gem only to fade away. Life is like that and now we are able to make it a gem before it fades away to the next generation. My wish for all is that we see this connection to nature and how it affects our bodies, minds and spirits. Happy Spring!!
Read this article about a book written by a strong woman who has done her research on why many Americans still know nothing about autoimmune diseases while they remain the strongest category of disabling disorders. The environment is increasingly more toxic which increase the incidence of autoimmune strains disease. It is a good cautionary story of taking good care of yourself and the planet. Also of how the media gives no attention to it because things like cancer, heart disease and erectile dysfunction. Think about it. Have you ever seen a commercial for a new exciting treatment for lupus? Yet it is said that one in nine people have an autoimmune disorder.
What can we do? Write your letters to senate. Write your local media and start learning. There will be an increase in this area if we do not educate people. Knowledge is power and there is much hope if we all do our best to make aware the public on how our environment and bodies are directly related. We each handle it or our bodies express it differently. Some experience depression, cancer, lupus, anger, anxiety, heart attacks or just plain ambivalence. We each have our bucket to carry up hill and that is life. Perhaps you do not have time to help but you can share this link with your friends, especially female loved ones. It can save a life.
On that note I am down with a cold but feeling better and it is a lovely full moon and equinox is close at hand as is Easter. With the change from winter to spring I feel a need to rest and pull in energy before the springs begins to bloom and days are filled with light and endless possibilities of new growth and new life. I find this a metaphor for my own inner growth and that which our world is going through. I think of Tibetan Monks having to fight for their home and right to practice meditation. (China should be ashamed, but then so should our government for forcing businesses to move to China, for borrowing money from them and for making them the super power they have become. ) But if you pay attention to the world, which is crazier everyday( just turn on TV for five minutes and you can see) we are in a new and strange world, but the good news is that people are waking up and taking a stand. This is growth. We can each do our part to shed light on whatever topic(s) is most important to us. We can help our neighbors and donate some time to a good cause. We can write to our politicians about what is important. This is how we change. By having a voice and using it for a positive change with out anger or violence, but with dialog and understanding. A little compassion goes a long way, but our voices can still be loud and strong. Think of a crocus reaching for the sky. It does not ask how or why it just forces itself up naturally. Then it blooms into a lovely gem only to fade away. Life is like that and now we are able to make it a gem before it fades away to the next generation. My wish for all is that we see this connection to nature and how it affects our bodies, minds and spirits. Happy Spring!!
Monday, March 17, 2008
Good Thought For the Day
Measured objectively, what a man can wrest from Truth by passionate striving is utterly infinitesimal. But the striving frees us from the bonds of the self and makes us comrades of those who are the best and the greatest.
Einstein
Einstein
Sunday, March 16, 2008
A new day
After a ten day alone in Michigan watching the white snow out of our big window, I came to a very important realization I have been carrying almost my entire life. I have identified so much with lupus as a patient, a daughter of a patient, advocate etc...that it is what people knew most about me or how I defined myself. I am now putting that old story or tape behind me. I am so many other things on top of having an illness. I see my potential and the harm in being so identified with one aspect of one's being. I am a survivor and a human with dreams, goals, hobbies and hopes like everyone else. So I ask you dear friends to support this transformation. I will only bring up lupus if it is necessary and I ask you do not ask me about it. Ask me about things which make me feel strong, smart and healthy. "Normal" so to speak. I feel stronger and better every day.
The new shift will also mean a new way of writing here. I am writing this blog as a base for a book. I will be telling a story which is magical, funny and sometimes raw. But most of all it is about what being in the now can be like.
Love,
Angela
The new shift will also mean a new way of writing here. I am writing this blog as a base for a book. I will be telling a story which is magical, funny and sometimes raw. But most of all it is about what being in the now can be like.
Love,
Angela
Monday, February 25, 2008
DANGER DRUG RECALL
As it turned out I actually did get the bad batch of re-called fentanyl pain patches. the company is SANDOZ manufactured by ALSA and the information should be available at your pharmacist or google it online. What pisses me off is that I got an email from a friend last week about this recall and the pharmacy just received the note from the drug company. I have been experiencing symptoms and have not been feeling good for two flipping weeks which is most likely from this malfunctioning patch. It was slowly leaking out and could have had an overdose or died of a heart attach. My symptons have been extremely bad itching everywhere( and I mean everywhere). So please pass this along if you know anyone who may be on this medication. if I were the kind of person to sue I would. Not because they made a mistake but because my pharmacist even inquired about this and was told we did not get the re-called item. They are willing to give all patients who got this a free replacement. Man I am so over the drug companies, but I am at a loss for other pain control. Yes I meditate, breathe, creative visualizations, yoga, acupuncture, craniosacral etc....What is a girl to do?I am tired of living with extreme bone-joint-muscle pain due to lupus and long term effects of drugs which save my life. Now I am just venting. I will be the enlightened being I know myself to be and forgive and move on. Thanks for listening. I will write a letter to the company though.
Thursday, February 21, 2008
Thought for Thu, 21 Feb 2008
Thought for Thu, 21 Feb 2008
Buddhism has the characteristics of what would be expected in a cosmic religion for the future: it transcends a personal God, avoids dogmas and theology; it covers both the natural spiritual, and it is based on a religious sense aspiring from the experience of all things, natural and spiritual, as a meaningful unity. - Albert Einstein..
Today I pondered the wonder I saw last night as the full moon went into eclipse. The power of the pulling forces from the sun-moon are intense in so many ways to me. I feel them in my emotions, which we now know is actually a gravitational pull on the fluids(blood) in our bodies, which can cause the emotional part of the brain as well as other parts to feel "pressure" and makes us act a little strange, have weird dreams, feel strange sensations, be emotional or even angry. This past week I have run the gamut of emotions after many little "problems" which I only viewed as "imposed" problems. These every day events do not actually shape who we are, they are little blips reminding us of what is truly important. The eclipse of the full moon made me realize how small these little problems are and how insignificant is the energy on which I place in them.
I decided today I will deepen my meditation-yoga-balance practice. I do not practice daily as I should or as long as I should. I say "should" because I know the profoundly positive effect this has on my well being and in keeping lupus at bay. I may not be able to grow back bone where it is gone or kidney tissue where it is hardened, but then again maybe I can? Miracles happen every day. I felt such a sense of this reality and peace when receiving acupuncture from my friend and Dr. Cissy Majebe. She has been treating me for 20 years. I first saw her when I was in a coma in the hospital in 89 with little to no pulse. They said I was dying. After a treatment and many prayers I lived. The drugs and other forms of healing: acupuncture, mediation, being quiet, listening, resting, swimming, yoga, gardening, reading, breathing and walking in nature all help me heal. Cissy has always been a rock for me in helping me remember how far I have come with the tool bag I acquired. I watched her keep her mate alive for five years with acupuncture-herbs and western medicine while waiting for a transplant. She is doing well after her new kidney was placed into her fragile body. Long term effects may never go away but the memory of the miracle in life is always there if we chose to remember.
So I place my resolution out there to the ethers and whoever still reads this; I will walk tall even if in a wheelchair and I will see no limitations only balance. I am grateful for all the teachers along the path who have inspired me. Some will never know how much they have touched me. I DO.
Buddhism has the characteristics of what would be expected in a cosmic religion for the future: it transcends a personal God, avoids dogmas and theology; it covers both the natural spiritual, and it is based on a religious sense aspiring from the experience of all things, natural and spiritual, as a meaningful unity. - Albert Einstein..
Today I pondered the wonder I saw last night as the full moon went into eclipse. The power of the pulling forces from the sun-moon are intense in so many ways to me. I feel them in my emotions, which we now know is actually a gravitational pull on the fluids(blood) in our bodies, which can cause the emotional part of the brain as well as other parts to feel "pressure" and makes us act a little strange, have weird dreams, feel strange sensations, be emotional or even angry. This past week I have run the gamut of emotions after many little "problems" which I only viewed as "imposed" problems. These every day events do not actually shape who we are, they are little blips reminding us of what is truly important. The eclipse of the full moon made me realize how small these little problems are and how insignificant is the energy on which I place in them.
I decided today I will deepen my meditation-yoga-balance practice. I do not practice daily as I should or as long as I should. I say "should" because I know the profoundly positive effect this has on my well being and in keeping lupus at bay. I may not be able to grow back bone where it is gone or kidney tissue where it is hardened, but then again maybe I can? Miracles happen every day. I felt such a sense of this reality and peace when receiving acupuncture from my friend and Dr. Cissy Majebe. She has been treating me for 20 years. I first saw her when I was in a coma in the hospital in 89 with little to no pulse. They said I was dying. After a treatment and many prayers I lived. The drugs and other forms of healing: acupuncture, mediation, being quiet, listening, resting, swimming, yoga, gardening, reading, breathing and walking in nature all help me heal. Cissy has always been a rock for me in helping me remember how far I have come with the tool bag I acquired. I watched her keep her mate alive for five years with acupuncture-herbs and western medicine while waiting for a transplant. She is doing well after her new kidney was placed into her fragile body. Long term effects may never go away but the memory of the miracle in life is always there if we chose to remember.
So I place my resolution out there to the ethers and whoever still reads this; I will walk tall even if in a wheelchair and I will see no limitations only balance. I am grateful for all the teachers along the path who have inspired me. Some will never know how much they have touched me. I DO.
Tuesday, February 19, 2008
good news
the pharmacist, whom i love, emailed to tell me after researching found out i was not taking the malfunctioning patch and she did not order from that batch or wholesaler and all is good except i am having a major itch reaction and can not just quit taking it, as with any opiate. i really feel i am immuned to drug addiction in that sense but i forget that all opiates have a chemical addiction. just because i am not dependent on it emotionally and can stop taking it whenever i decide, it only shows my will is stronger than that chemical reaction the body feels so strongly. i sometimes have thought i was immuned from chemical or any dependency and in my mind i am (except for chardonay). the fact is that with any medication one needs to slowly stop instead of abruptly stopping. i learned a lesson i have had to learn many times as all chronically ill people do. sometimes we get very sick of all the medications, treatments, illnesses, side effects, social ramifications and all that goes with being with a chronic and sometimes life threatening illness. with that i know i need some rest this week.
the large buddha in our apt. is the best healing mode for me now !!! i meditated with it for an hour and felt so relaxed.
the large buddha in our apt. is the best healing mode for me now !!! i meditated with it for an hour and felt so relaxed.
difficult few days plus year and half?
after i posted last time i lost half of my computer files which consisted mostly of a book i have been writing and compiling info for. long story but i even tried to back up and did something wrong or the device was messed up who knows. i was able to retrieve half after a computer guru worked on it. i cried when i felt the incredible loss of all the recordings i made on digital recorder of my grandparents, douglas, dr's, friends, family and me for the book. i had letters, poems and many emails which were touching and inspiring all to be a part of the book. i guess one has to learn not to be so attached to certain "things".
then today found out why i had problems with the pain patch and problems after taking it off. there is a recall on them after many people reported issues. the plastic had a slow leak in some instances which would leak the opiate onto skin and perhaps caregivers as well. the itch, flu like symptoms and tiredness was probably related and when i stopped suddenly i could have had a heart attack due to opiate withdrawals. i was under the impression i could stop taking them. i learned a huge lesson or many lessons this week. it is always something. i also get frustrated being away from home where all our files and stuff is located. i find i am looking for information which is in a file there or forgot a nice rain coat or a pair of rain boots etc. just the comfort of being at home is strange. i also see the cup half full, don't worry, i am not losing my positive attitude simply being human for a moment. all in all the emotions of many months and even past 1.5 years is being felt.
then today found out why i had problems with the pain patch and problems after taking it off. there is a recall on them after many people reported issues. the plastic had a slow leak in some instances which would leak the opiate onto skin and perhaps caregivers as well. the itch, flu like symptoms and tiredness was probably related and when i stopped suddenly i could have had a heart attack due to opiate withdrawals. i was under the impression i could stop taking them. i learned a huge lesson or many lessons this week. it is always something. i also get frustrated being away from home where all our files and stuff is located. i find i am looking for information which is in a file there or forgot a nice rain coat or a pair of rain boots etc. just the comfort of being at home is strange. i also see the cup half full, don't worry, i am not losing my positive attitude simply being human for a moment. all in all the emotions of many months and even past 1.5 years is being felt.
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