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.
Tuesday, June 17, 2008
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.
Saturday, February 16, 2008
my funny valentine
Douglas really out did himself this year. I was surprised by a lovely "Angel Food" candle, gorgeous flowers and a dinner out at a small restaurant on the 13th..(always ahead of our time). Then on 14th he said we would go by the hotel project to check on things and lock up and he had a surprise. We ended up on top of a friends building in downtown with the best views , and one of the highest, in the city. I was so happy. We watched the sunset with a bottle of wine us three and watched the sky go form pink to dusty purple-grey then dark. The funny thing is this friend and his wife ended up buying mine and mark's old store " A Far Away Place". It is a small world. Then we came home for a healthy dinner I made for him with yams, greens and chicken in butternut squash sauce. What a great day. We even treated ourselves to two vintage coats from a small thrift shop and two funky old tables that need some love. You know I love my mid century modern tables and chairs. I might use them in hotel but they will look great at home !! What a splurge. Then it was back to the computer.
All is coming along on the projects. The miles building exterior remod is turning out to be rich and opulent with these lovely iridescent tiles and the copper colored awning. Doug's copper door will be the cherry. The hotel is getting more complicated with HVAC and elevator. Now he wants solar on the roof too for hot water and a cafe will be coming soon too. It could be next winter before it is up and running. Today we are having our weekly power design meetings. I am excited to be on the conceptual and design end from the logo, branding, signs, menu, purchases etc. I have learned so much and even wrote the business plan for the hotel which was a real challenge but is good. Our client has placed enormous trust in us, especially Doug. I have the lucky job of mostly being on the computer, phone or in the home office. For the first time in my life I even have carpal tunnel in left hand. Doug walks from job to job and back to office four times a day.......but he loves it.
I stopped the pain patch and had a rough week with getting pain under control ,fatigue,itching and walking on sidewalks does not help bone pain on those little fractures(infarcts througout body) or joints. The yoga class really stretches me too and I hurt but we are trying to use milder forms of pain management. So far it's not working so well. I guess itching is better than being in pain. When it starts to keep me in bed or down on the couch for two hours every afternoon(like past week) and keeps me form going out walking, then I have to ask myself "why not use opiates if they help?". I met the Dr. down here and I like him. I still go to my acupuncturist every week and make stinky tea with dragon drool and bug butts, but it seems to be useful and I always come home and have the deepest sleep after a treatment. I guess the past two years has played havoc on my nervous system being in pain and always on guard. This helps me rest and helps with the pain. The gas is another story for another day. Chinese herbal tea is known for it's stinky side effects; while cooking and after ingesting. Just ask Doogie. All in all I feel stronger and look better-healthier every day. I even gained a couple pounds and muscles.
I find time at night to read and almost done with 500 page "Einstein". fascinating read.
For all you friends and family that check this out I love you and thanks for caring !!!! I know I have not contacted many friends while in Asheville but I will as time and energy allows. I only have so much social energy to give and lots of people with whom I want to share our friendship.
Namaste
All is coming along on the projects. The miles building exterior remod is turning out to be rich and opulent with these lovely iridescent tiles and the copper colored awning. Doug's copper door will be the cherry. The hotel is getting more complicated with HVAC and elevator. Now he wants solar on the roof too for hot water and a cafe will be coming soon too. It could be next winter before it is up and running. Today we are having our weekly power design meetings. I am excited to be on the conceptual and design end from the logo, branding, signs, menu, purchases etc. I have learned so much and even wrote the business plan for the hotel which was a real challenge but is good. Our client has placed enormous trust in us, especially Doug. I have the lucky job of mostly being on the computer, phone or in the home office. For the first time in my life I even have carpal tunnel in left hand. Doug walks from job to job and back to office four times a day.......but he loves it.
I stopped the pain patch and had a rough week with getting pain under control ,fatigue,itching and walking on sidewalks does not help bone pain on those little fractures(infarcts througout body) or joints. The yoga class really stretches me too and I hurt but we are trying to use milder forms of pain management. So far it's not working so well. I guess itching is better than being in pain. When it starts to keep me in bed or down on the couch for two hours every afternoon(like past week) and keeps me form going out walking, then I have to ask myself "why not use opiates if they help?". I met the Dr. down here and I like him. I still go to my acupuncturist every week and make stinky tea with dragon drool and bug butts, but it seems to be useful and I always come home and have the deepest sleep after a treatment. I guess the past two years has played havoc on my nervous system being in pain and always on guard. This helps me rest and helps with the pain. The gas is another story for another day. Chinese herbal tea is known for it's stinky side effects; while cooking and after ingesting. Just ask Doogie. All in all I feel stronger and look better-healthier every day. I even gained a couple pounds and muscles.
I find time at night to read and almost done with 500 page "Einstein". fascinating read.
For all you friends and family that check this out I love you and thanks for caring !!!! I know I have not contacted many friends while in Asheville but I will as time and energy allows. I only have so much social energy to give and lots of people with whom I want to share our friendship.
Namaste
Friday, February 1, 2008
where is the real winter?
Here in Asheville there has been cold weather with lots of wind but where is the snow? People are so concerned about the lack of precipitation due to summer drought and winter sunshine? I have to admit I miss Michigan snow at times. It is just natural. The seasons need to be. The why is always up for debate yet obvious to everyone who wants to accept it. The answers and solutions are available but so far in the future for implementation. Hang in there folks.
All is good here yet at times we both feel our brains being stretched to their limits. It is always good to challenge the brain matter but I have learned the balance is good too. After all work is work.
I took my first yoga class here for special needs. Most have MS. I have known the teacher for 20 years and she is wonderful. I have to get used to new ways of doing her style. The class in Ann Arbor is very different. It is the same with almost everything. The meditation temple is better for me here, yet the food costs are much much higher. Trade offs.
Off to visit family tomorrow and really looking forward to it. I hope you are all well and happy. A
All is good here yet at times we both feel our brains being stretched to their limits. It is always good to challenge the brain matter but I have learned the balance is good too. After all work is work.
I took my first yoga class here for special needs. Most have MS. I have known the teacher for 20 years and she is wonderful. I have to get used to new ways of doing her style. The class in Ann Arbor is very different. It is the same with almost everything. The meditation temple is better for me here, yet the food costs are much much higher. Trade offs.
Off to visit family tomorrow and really looking forward to it. I hope you are all well and happy. A
Friday, January 25, 2008
gravity and worm holes
Today I gaze out the window after a cold night in the mountains with the full moon hanging in the sky unaffected, it seems, by the gravitational pull we feel so much of on earth. I am reading The most comprehensive biography(in my opinion)on that wacky theoretical physicist Albert, whom we either love or or don't. I always held him in such high regard for his insights and outlook on life. Yet this book shines a new insight on this man as he grew from a youth to his thirties when he won his first Nobel prize. Then during the times after his carefree-bohemian youth as an aged and wise old professor. The younger version was a spitfire, smart ass punk. He did poorly in earlier schooling and actually dropped out. Luckily he was able to complete school and did eventually receive a doctorate, even though he peeved most of his professors. You see he learned visually, thus working in theory. He was not that great with math in the beginning and depended on mathematician friends to handle the research and lab work. Later in his mid 30's he had gained a greater respect and understanding of numbers for which apparently control the universe or at least answers every question in universal-scientific problems and beyond. My respect has grown for him learning the realities if his life and disposition, albeit somewhat difficult. The book is by Walter Issacson and is simply called "Einstein". A good yet challenging read !!
This brings me to gravity. We use the word in so many ways:
The gravitational pull; The gravity of the situation; "he had a certain amount of gravitas", etc....It implies heaviness or weight. In fact it is truly light and holds us in space as if we were light as a feather, or so it "seems". Yet we are truly moving with the planet as it spins around on it's axis making us objects in perpetual motion yet totally oblivious to it's effect and reality.
For such a long time I felt heavy as if gravity was holding me tightly to the earth. I could sink deep into her if I closed my eyes and let myself go. Now I have a new feeling of lightness as I did in earlier days. It comes to me at moments least expected. I am a universe unto myself and yet floating in orbit around those whom I love and who have a positive disposition which radiates a lightness I can see and feel. It is a good way to feel. The heaviness and intense weight of gravity is lifted and I feel a new corner to be rounded,a hill to climb and a mountain from which to jump and fly. The quanta in between is more obvious now. Like a far off light sparkling in the black sky(we are unable to see the tree branches moving between us and the light causing a blinking-sparkling effect) all we see is a twinkle...and we smile.
My handsome husband is still working on the worm hole theory. See attached link for "Doug's Big Hole"............Blessings to you who all.
http://www.madarasdesign.com/update.html
This brings me to gravity. We use the word in so many ways:
The gravitational pull; The gravity of the situation; "he had a certain amount of gravitas", etc....It implies heaviness or weight. In fact it is truly light and holds us in space as if we were light as a feather, or so it "seems". Yet we are truly moving with the planet as it spins around on it's axis making us objects in perpetual motion yet totally oblivious to it's effect and reality.
For such a long time I felt heavy as if gravity was holding me tightly to the earth. I could sink deep into her if I closed my eyes and let myself go. Now I have a new feeling of lightness as I did in earlier days. It comes to me at moments least expected. I am a universe unto myself and yet floating in orbit around those whom I love and who have a positive disposition which radiates a lightness I can see and feel. It is a good way to feel. The heaviness and intense weight of gravity is lifted and I feel a new corner to be rounded,a hill to climb and a mountain from which to jump and fly. The quanta in between is more obvious now. Like a far off light sparkling in the black sky(we are unable to see the tree branches moving between us and the light causing a blinking-sparkling effect) all we see is a twinkle...and we smile.
My handsome husband is still working on the worm hole theory. See attached link for "Doug's Big Hole"............Blessings to you who all.
http://www.madarasdesign.com/update.html
Thursday, January 17, 2008
Snow in Asheville....
It is a snow day as they say down here. all schools closed and stores shut down for the day. It only snowed one inch but the mountains are known for black ice and little equipment for which to deal with snow-ice. It is like a day off.
All is good here. We are working slowly on the hotel project getting blue prints finalized for engineers and sprinklers dudes. The city gave a green light to move ahead with the permit process which means demo and basic work has started. This is considered a remodeling job as opposed to a renovation or restoration. This allows us to be grandfathered in which is a big hassle saver. Hopefully everything will pass and costs will be within budget. Everything is so expensive here due to shipping-trucking things over the mountains.
Doug's "Big Hole Project" got a shot on the news and an article in the paper so the clients are happy. They drilled a 56 inch diameter and 15 inch thick hole into the side of a brick building for a circle window. That was the biggest Bit I have ever seen.
I signed up for a yoga class for "special needs" and it is right down the street. I can also go to a free yoga day a few times a month which is fun. I started my practice back at the Zen center which means every Tuesday am 7-8 we meet for group mediation then every Sunday. I really missed this part of my practice as it keeps me connected to other spiritual people who want to grow and be good humanitarians while still having a private spiritual relationship and practice. We do weekend silent retreats too which is wonderful. They are also involved in hospice where I once volunteered.
Everywhere I go I hear someone say "hi Angela, when did you move back ?". I explain we are here part time and explain the past two year's events in bullets. but it's great to see friendly faces of the past and I always feel very loved here as I do everywhere I go. It is strange to have friends who you have not seen in two years and when you meet up it's as if time never went by. That is a good sign.
That is it for now. Tomorrow eve I am going out with the girls at 5:00 for a public jazz event then dinner. Saturday to a friends party. I have to get my social skills working again. No slippers? darn.
All is good here. We are working slowly on the hotel project getting blue prints finalized for engineers and sprinklers dudes. The city gave a green light to move ahead with the permit process which means demo and basic work has started. This is considered a remodeling job as opposed to a renovation or restoration. This allows us to be grandfathered in which is a big hassle saver. Hopefully everything will pass and costs will be within budget. Everything is so expensive here due to shipping-trucking things over the mountains.
Doug's "Big Hole Project" got a shot on the news and an article in the paper so the clients are happy. They drilled a 56 inch diameter and 15 inch thick hole into the side of a brick building for a circle window. That was the biggest Bit I have ever seen.
I signed up for a yoga class for "special needs" and it is right down the street. I can also go to a free yoga day a few times a month which is fun. I started my practice back at the Zen center which means every Tuesday am 7-8 we meet for group mediation then every Sunday. I really missed this part of my practice as it keeps me connected to other spiritual people who want to grow and be good humanitarians while still having a private spiritual relationship and practice. We do weekend silent retreats too which is wonderful. They are also involved in hospice where I once volunteered.
Everywhere I go I hear someone say "hi Angela, when did you move back ?". I explain we are here part time and explain the past two year's events in bullets. but it's great to see friendly faces of the past and I always feel very loved here as I do everywhere I go. It is strange to have friends who you have not seen in two years and when you meet up it's as if time never went by. That is a good sign.
That is it for now. Tomorrow eve I am going out with the girls at 5:00 for a public jazz event then dinner. Saturday to a friends party. I have to get my social skills working again. No slippers? darn.
Wednesday, December 26, 2007
The thing about surviving.....
I sit here now, after lounging all day in bed with movies and a book, wondering what it is like to survive. Last year I did not see my future. This year others have died. Over the years I have mourned many who did not survive. I feel there is a bitter sweetness about surviving. I look at it from both ends. One end looks like hope or skating away from the hands of death like a child playing tag. Then the other end looks very contorted and filled with questions that have no answers and confusing codes like the periodic table, confusing to the non scientific mind.
I wonder why some leave earlier than others or why some live to be over 100 years old despite their horrible diets or packs of cigarettes smoked. I wonder why youth can be given and taken so quickly. I feel sad for those who walk the planet dead but still taking in air as if they had no idea of what they we are wasting or any thought of leaving more for those who do actually treasure every moment.
I look at this day, my birthday, as a day of reflection for all the goodness there is and for all the equally weirdness that prevails. Then I sit back and breathe in air with the great love and zest of what the O2 brings and I look around and feel both blessed and cursed at once. Part of me feels lucky and blessed to be alive and the other part feels guilty for some odd reason that other's whose lives once burned bright dimmed so quickly. That is the irony of life. On this day of my birth the irony hits home even more so than ever. The O2 smells that much sweeter.
Douglas made videos for my Christmas gift and for my birthday. He also made one for Dad's birthday. We watched these yesterday and today feeling it all flow through me, the years I have been breathing and all the faces who breathe no more. I am in awe of that awareness and of the life I have been re-given so many times.
I am blessed and blissed. The symmetry and irony meld into one life touched and molded by so many. I give thanks for that. I give thanks for my loved ones, especially my sweet mate Douglas.( I will forgive him for some of the photos he sent our family of me in times least attractive) then I look at him in wonder because I am so lucky. There is no irony in love like that and in the gift of love and life. That is pure magic.
So for this new year the gift I give to you all is the gift of love and life........Pure and simple.
I wonder why some leave earlier than others or why some live to be over 100 years old despite their horrible diets or packs of cigarettes smoked. I wonder why youth can be given and taken so quickly. I feel sad for those who walk the planet dead but still taking in air as if they had no idea of what they we are wasting or any thought of leaving more for those who do actually treasure every moment.
I look at this day, my birthday, as a day of reflection for all the goodness there is and for all the equally weirdness that prevails. Then I sit back and breathe in air with the great love and zest of what the O2 brings and I look around and feel both blessed and cursed at once. Part of me feels lucky and blessed to be alive and the other part feels guilty for some odd reason that other's whose lives once burned bright dimmed so quickly. That is the irony of life. On this day of my birth the irony hits home even more so than ever. The O2 smells that much sweeter.
Douglas made videos for my Christmas gift and for my birthday. He also made one for Dad's birthday. We watched these yesterday and today feeling it all flow through me, the years I have been breathing and all the faces who breathe no more. I am in awe of that awareness and of the life I have been re-given so many times.
I am blessed and blissed. The symmetry and irony meld into one life touched and molded by so many. I give thanks for that. I give thanks for my loved ones, especially my sweet mate Douglas.( I will forgive him for some of the photos he sent our family of me in times least attractive) then I look at him in wonder because I am so lucky. There is no irony in love like that and in the gift of love and life. That is pure magic.
So for this new year the gift I give to you all is the gift of love and life........Pure and simple.
Thursday, December 13, 2007
Dad turned 60
Wow has time flown by. Where did it go? My dad just turned 60, Doug turns 48 in January and I turn 41 this month. How does that happen. My sense of time is different from that of most people. I tend to live in the moment and try to not plan too much. One thing I am planning is a three month move to Asheville with Douglas to work on a project. He has been going back and forth for a while and will continue. Makes sense for me to be down there for the winter. I am really excited about the project and about spending time with much missed friends and family. I also realize there is fear in steeping out of my comfort zone.
This past year and half has been hellish on this old body of mine, yet it has provided me time to rest, revive, heal, contemplate and grow as a human. I have had much alone time to look deep into this ole soul and I sometimes did not like what I saw. I also at times sat in wonder of "ME". I know the power of healing on a deeper level than ever before and now I am ready to get back out there in the world and see what I am made of now. The body may be destroyed to an extent and still managing a very scary disease, but there is a self empowerment I have gained. I feel I can live a full life. What do I have to lose? The same things we all do. I realized we are all on this boat together full of vulnerability and warts and all that stuff.
All in all I wanted to say I am peeking my head out of the shell and testing the waters beyond my back yard. If you want to reach me you can email me and I will be glad to pass on cell phone or other numbers for contact. I will check email every day a few times while down there. I will have to fly home for medical stuff a few times, damn I can not escape totally, but that is the plan in this moment. For tomorrow it could chnage.
Happy holiday season and for all of you who celebrate whatever holiday you celebrate during this time till January 1st may it be well spent and full of love and blessings. Make every day count !!! Tell everyone you love how you feel and walk away from those situations which no longer serve your highest good. Reach ot a hand to help another and always be kind. Every season is a season for kindness.
I also wanted to say to my friends who just lost their dear brother and friend Sam.......I love you and you were lucky to have had this time with him to tell him how greatly he was loved. What a wonderful way to go. I am sad for your loss.
This past year and half has been hellish on this old body of mine, yet it has provided me time to rest, revive, heal, contemplate and grow as a human. I have had much alone time to look deep into this ole soul and I sometimes did not like what I saw. I also at times sat in wonder of "ME". I know the power of healing on a deeper level than ever before and now I am ready to get back out there in the world and see what I am made of now. The body may be destroyed to an extent and still managing a very scary disease, but there is a self empowerment I have gained. I feel I can live a full life. What do I have to lose? The same things we all do. I realized we are all on this boat together full of vulnerability and warts and all that stuff.
All in all I wanted to say I am peeking my head out of the shell and testing the waters beyond my back yard. If you want to reach me you can email me and I will be glad to pass on cell phone or other numbers for contact. I will check email every day a few times while down there. I will have to fly home for medical stuff a few times, damn I can not escape totally, but that is the plan in this moment. For tomorrow it could chnage.
Happy holiday season and for all of you who celebrate whatever holiday you celebrate during this time till January 1st may it be well spent and full of love and blessings. Make every day count !!! Tell everyone you love how you feel and walk away from those situations which no longer serve your highest good. Reach ot a hand to help another and always be kind. Every season is a season for kindness.
I also wanted to say to my friends who just lost their dear brother and friend Sam.......I love you and you were lucky to have had this time with him to tell him how greatly he was loved. What a wonderful way to go. I am sad for your loss.
Sunday, November 11, 2007
http://www2.med.umich.edu/prmc/media/pr_search.cfm?search=custom&keyword=Rheumatology
Check out this link for all the research University of Michigan supports for lupus and similar conditions.......Many of which I am involved.
Friday, November 9, 2007
general update
All is well on the home front. Douglas is in NC and he is well too. It has been starting to feel more like November with a few snowflakes and the leaves are still on our big maples. Health is good minus a cold and infection which is related to meds. which keep the white cell count down and now lowering red cell but physical therapy 3 months and 9 days post surgery is going great !!! I have full use and range of motion and doing poses in yoga I never imagined. Not bad for someone who might have been wheelchair bound. Will try my best to hold off on any further treatments other than what I am currently doing.....Thank you all for your words of encouragement and cards etc through out this past year and half. I believe the hard part is over.
Garden still pumping out greens and parsley. I also have ginger roots growing in basement. I am eating peppers, squash, potatoes and tomatoes from the garden.
Douglas and I will probably be both be going to NC through the winter on 3 weeks trips for work. I am getting back in the Madaras Design groove on a new project. It feels good to have a purpose and focus.
Much Love,
Angela
Garden still pumping out greens and parsley. I also have ginger roots growing in basement. I am eating peppers, squash, potatoes and tomatoes from the garden.
Douglas and I will probably be both be going to NC through the winter on 3 weeks trips for work. I am getting back in the Madaras Design groove on a new project. It feels good to have a purpose and focus.
Much Love,
Angela
Tuesday, October 30, 2007
Monday, October 29, 2007
butterfly fetish and update
Everyone loves pretty butterflies, that is unless one has a rare disorder called Entomephobia.
with that being said the butterfly has been the icon and mascot for lupus for many years. I myself have photos and paintings of butterflies all over the house in some form or fashion. A recent addition to my collection is a new set of note cards which are used to raise funds for The Friends of Amster Lupus Fund, raising money for research at U of Michigan for Lupus !!! Buy ten cards for $10.00 and get a tax deductible donation for note cards which can be used for any occasion and also given as gifts.
Lupus Note Cards are in!!! If you ever have
to send Thank-You's, or just a note to someone....I have the cards for you.
And, You can feel great about sending them because they not only are for
Lupus awareness...but, also ALL proceeds will be donated to the Amster Lupus
Research Fund at U of M, in Ann Arbor, Michigan. They use monies donated to
fund research so that we can find a cure for Lupus. It is a great cause. I
will attach a sample picture of just one of the eight different fold over
cards. The cards are a glossy picture of eight different real photo
butterflies. Each card has its own envelope. Each card when folded over
measures 5.5" X 4". The set is a great gift idea too! Each set sells for $10
and as I said before ... all proceeds will go for Lupus Research! To order email address below.
mailto: www.thebullittgirl@wowway.com
All is well in Ang-Doog world. He has been home for almost three weeks and I am spoiled. We have been working on too many projects to mention. Our garden seemed to last so long we concerned of steroid use? Is it legal for plants to use steroids to pump up? I am cooking Ancho Peppers we picked yesterday. We ate sweet tomatoes with our lox and capers for breakfast(yes we live in Detroit area) It's a Yankee breakfast. So sweet and tasty. Our ginger is even still growing in the great north. Global warming has been good to us here in car-land. We have longer summers and more tame winters which means longer growing season !!! and lots of duck meat and fresh salmon. We have eaten my cousins freshly caught salmon and Dad's duck this weekend. Next weekend it might be woodchuck, one never knows. The liver and gizzards are good. "When in Rome". I am also learning more about computers and blogs and site creation. I feel at times like throwing the hunk of plastic and chips out the window sometimes but this is one of the benefits...COMMUNICATION. Being that we rarely talk on the phone or write one another.the computer is a great way to talk, chat, write and read. I have been dragged into this century kicking and screaming but I finally feel I get it. and I only lost a few handfuls of what hair I have left.
Medical is good. I am recovered from surgery and tales around town say I have the best shoulder in replacement history or her-story. I can do mroe than before. I had a major breakthrough in yoga class Friday. I was rockin as they say. I feel strong and getting back in groove. I still have some weird blood tests action mixed with all the symptoms of long term lupus and steroids but I feel I stepped over the threshold to a new and brighter future, which seemed so gloomy just one years past. I feel sexy and hot and almost healthy. I even gave an interview for a national publication and could speak well and remember things I feared I had lost for good. So all is good in my life.
Holidays are coming up and we have not been able to make firm plans.so I guess all is open. I miss having 30 people for Thanksgiving in Asheville. Those were fun days. Anyone(you know who you are) from that group of family-friends is welcome to come share some foul and wine. Yeew.sounds horrid, but trust me a 20 lb. turkey and the fixings is great !!!! tofurky included. Come one come all........RSVP please.
Please let me know how you are???
Love
A
with that being said the butterfly has been the icon and mascot for lupus for many years. I myself have photos and paintings of butterflies all over the house in some form or fashion. A recent addition to my collection is a new set of note cards which are used to raise funds for The Friends of Amster Lupus Fund, raising money for research at U of Michigan for Lupus !!! Buy ten cards for $10.00 and get a tax deductible donation for note cards which can be used for any occasion and also given as gifts.
Lupus Note Cards are in!!! If you ever have
to send Thank-You's, or just a note to someone....I have the cards for you.
And, You can feel great about sending them because they not only are for
Lupus awareness...but, also ALL proceeds will be donated to the Amster Lupus
Research Fund at U of M, in Ann Arbor, Michigan. They use monies donated to
fund research so that we can find a cure for Lupus. It is a great cause. I
will attach a sample picture of just one of the eight different fold over
cards. The cards are a glossy picture of eight different real photo
butterflies. Each card has its own envelope. Each card when folded over
measures 5.5" X 4". The set is a great gift idea too! Each set sells for $10
and as I said before ... all proceeds will go for Lupus Research! To order email address below.
mailto: www.thebullittgirl@wowway.com
All is well in Ang-Doog world. He has been home for almost three weeks and I am spoiled. We have been working on too many projects to mention. Our garden seemed to last so long we concerned of steroid use? Is it legal for plants to use steroids to pump up? I am cooking Ancho Peppers we picked yesterday. We ate sweet tomatoes with our lox and capers for breakfast(yes we live in Detroit area) It's a Yankee breakfast. So sweet and tasty. Our ginger is even still growing in the great north. Global warming has been good to us here in car-land. We have longer summers and more tame winters which means longer growing season !!! and lots of duck meat and fresh salmon. We have eaten my cousins freshly caught salmon and Dad's duck this weekend. Next weekend it might be woodchuck, one never knows. The liver and gizzards are good. "When in Rome". I am also learning more about computers and blogs and site creation. I feel at times like throwing the hunk of plastic and chips out the window sometimes but this is one of the benefits...COMMUNICATION. Being that we rarely talk on the phone or write one another.the computer is a great way to talk, chat, write and read. I have been dragged into this century kicking and screaming but I finally feel I get it. and I only lost a few handfuls of what hair I have left.
Medical is good. I am recovered from surgery and tales around town say I have the best shoulder in replacement history or her-story. I can do mroe than before. I had a major breakthrough in yoga class Friday. I was rockin as they say. I feel strong and getting back in groove. I still have some weird blood tests action mixed with all the symptoms of long term lupus and steroids but I feel I stepped over the threshold to a new and brighter future, which seemed so gloomy just one years past. I feel sexy and hot and almost healthy. I even gave an interview for a national publication and could speak well and remember things I feared I had lost for good. So all is good in my life.
Holidays are coming up and we have not been able to make firm plans.so I guess all is open. I miss having 30 people for Thanksgiving in Asheville. Those were fun days. Anyone(you know who you are) from that group of family-friends is welcome to come share some foul and wine. Yeew.sounds horrid, but trust me a 20 lb. turkey and the fixings is great !!!! tofurky included. Come one come all........RSVP please.
Please let me know how you are???
Love
A
Tuesday, October 16, 2007
Living Your Best Life
Living Your Best Life - Fall Issue of Lupus Now Magazine Offers Tips for a Special Life
October 11, 2007Some people find the life they had planned sidelined by a diagnosis of a chronic and debilitating disease. But a great life doesn’t have to end with a diagnosis. Many people find their lives can be just as rewarding if they simply start living their “best life.” The fall 2007 issue of the Lupus Foundation of America’s (LFA) national magazine, Lupus Now®, tells the stories of several people who were diagnosed with lupus and offers tips from medical experts on ways to make life special through adjustments to mind, body and spirit.
But then Evans encountered a roadblock. She developed mysterious health problems that eventually landed her in the hospital and a diagnosis of lupus, a chronic life-threatening disease which causes the immune system to go awry and attack the body’s own cells and tissue. But rather than give up life, Evans started doing things differently.
Evans put off her pursuit of a doctorate degree. “My memory and concentration have really been affected,” she says. Still, the self-described “avid reader” keeps up with the latest books. “Now I listen to books on tape,” she says.
She also accepted a position as executive director of the Will and Jada Smith Family Foundation, which allows her to continue serving the public while making her own hours working from home. “Lupus made me look at my life and determine what was really important,” Evans says. “I consider myself lucky, even though my life has totally changed.”
Want to live your best life – mind, body and soul? The fall 2007 issue of Lupus Now magazine offers these ideas for staying on track – or adjusting to any detour life brings your way.
TRAIN YOUR BRAIN – The first key to living your best life is to be mentally alert. The best way to stay mentally fit is to pay attention, says memory fitness specialist Kathryn Kilpatrick, author of www.memoryfitnessmatters.com. “You need to develop strategies to stay focused,” says Kilpatrick. “Keep your brain oxygenated through regular exercise and a nutritious diet.” Listen well, write things down, get rid of distractions, and be aware of interruptions are ways you can remain mentally fit.
GET PHYSICAL – Develop an appropriate physical fitness routine that matches your lifestyle. “Use preventative care when you’re young,” says Dr. Jill Buyon of the Hospital for Joint Diseases at the New York University School of Medicine. “Take care of yourself before you get into a bad situation,” she says. People with lupus are predisposed to symptoms of aging, such as joint pain and severe fatigue. Eat well, get plenty of rest, watch your weight, drink alcohol in moderation and don’t smoke to stay healthy.
BEAUTIFUL SOUL – What good is a fit mind and a strong body without something that feeds your soul? Nurturing your spirit and passions may be the most important key to a life that’s complete and fulfilling. Prayer, volunteering, and taking up a hobby or creative activity can feed your spirituality. Live with hope for the future. Be the best you can be, no matter how that’s defined.
Tuesday, October 9, 2007
Further Reflection on Asheville and Friendship
Yesterday I wrote a brief rundown of my thoughts about my trip to let everyone know I am home and well. I also was told that some people actually read this daily......Wow !!! that inspires me to keep on writing. One day when I have enough for a book I can look back as this being a great learning experience on being devoted and disciplined to the daily process. My life has been so unpredictable for the past few years that I have had a difficult time committing to the same schedule or any schedule for that matter. Now my health allows me to make this commitment.
On a heartfelt level I felt touched by the people who I knew but not very well, as they embraced me with love and open arms as if I had been a long lost friend. Damn I could have been Prom Queen. The close friends and family I was able to see I realized how special they are to me and the intensity of our friendship. It was as if we just saw one another last month. Most people do not change inside, they remain the same but have added new experiences and have grown in most areas and back slid in others. Just like every human on the planet. The core of a person remains the same, which was comforting for some reason. I saw my younger friends who were struggling with careers, finances, young families etc. in a new phase of adulthood. Some have found their groove after years of trying on different hats and those friends who have been settled in life and career have found even more success and completeness in life. some have suffered loss of health, of loved ones, of child, a breast, a business or two, a mate or a home yet they rise above and keep going. I learned that my friends are resilient and strong with big hearts.
A few friends have moved and found lives fuller and happier in other parts of the world. I love that !!! I noticed friends around the ages of 45-60 have found their artistic talents or followed their dreams passionately. Some who have taken up art, jewelry making, voice or music talents, and some expanded their business' or created new exciting ones ( like Karen who moved to Costa Rica, bought a retreat for rental income, started a fishing business with a friend, is becoming quite the photographer, neuter-spay animals and help young girls, especially indigenous young ladies in finding their inner strengths and saving them from prostitution. All her philanthropic dreams coming true). I miss our rock hounding hikes, or shall I say Boulders?
Then there is Sweet, Lovely Constance. My special girlfriend-sister. Thank you for your generosity and home for both Douglas and I... Her home, ambiance, three boutiques, jewelry making, sewing-designing talents, music passion on piano and vocals, her wonderful son, and all the sweetness she has offered for so many years back to when we shared the same house in Montford in 1991, then to when I worked for her on and off part time through out the years and our budding friendship. I admire you so very much. As I do all my Friends who are constantly surprising me......You know who you are: too many names to mention...Thank you for spending time with me(or trying to) and sharing your lives, dreams and even sadness. Aimee I loved being with you and the boys. Jack and Leslie thank you for airport shuttle but missed more quality time. Mary and Chuck great times in your garden and in the outdoors and looking forward to next big vacation!! brigid, Chris, Betty, Louise, Leah, Marita and Hank you all have really moved into a great time of your lives with creative juices flowing !!! Keep it up I so admire you all. James, Lane, Ian, Hector, Halo, Will, Breakfast club boys, JD and all the males with whom I spent time....Love ya's. Thanks for keeping Doogie in line (hahahaha) Axel your home was a blessing in a natural way !!! Nancy and Thad you make me laugh. Nice having lunch with the girls at laughing seed and enjoying a much missed "Harmony Bowl" and to Gina, David and Tiffany for your healing touch.(sorry I missed Cissy and Joan...Keep on healing and so happy for new kidney !!) Leah we tried and I think we have Karma. We seem to miss each other in Ann Arbor and now in Asheville so please let me know when you are coming here and hopefully I can meet Martin. Avian, you are a mother figure and have been since we first met when I was a babe at 21 years old.....That means so much. Mary G. I miss seeing you in Asheville !!! But always great we keep in touch weekly. I had a blast with my family in Black Mountain !!! Love you Pete and Paula!! Keep me tuned in. To the rest of you I could not see you know my love !!!
The city is not the same in so many ways as you all know. I will save that for another blog where I can vent and brag !!! ALL I can say is that the changes in Asheville which have occurred over the past 2 years is astounding. I am amazed at the growth, the influx of very wealthy folk, people from other cultures spicing it up, more stores and restaurants, higher cost of living, 10.9% hike in cost of real estate in just one year, and all the vibrant city life usually saved for NYC and bigger towns around the globe. The most amazing thing to me was the fast growth without a real city plan that can accommodate the growth in a healthy, realistic way. My perspective. I am concerned for the people who have lived there for so long making the town what it is because of the high cost if living. I hope the powers that be will not allow another Vail, but with Tiger Woods class act golf course atop our lovely mountains, it is probably a dun deal. Million and billion dollar homes are being built as we speak. Let's hope the service industry can afford to stay. Who will prepare, serve and grow the food? Clean the streets? Volunteer for civic events? We shall see.........
That is it for now...........See the rest of you friends upon next return.
On a heartfelt level I felt touched by the people who I knew but not very well, as they embraced me with love and open arms as if I had been a long lost friend. Damn I could have been Prom Queen. The close friends and family I was able to see I realized how special they are to me and the intensity of our friendship. It was as if we just saw one another last month. Most people do not change inside, they remain the same but have added new experiences and have grown in most areas and back slid in others. Just like every human on the planet. The core of a person remains the same, which was comforting for some reason. I saw my younger friends who were struggling with careers, finances, young families etc. in a new phase of adulthood. Some have found their groove after years of trying on different hats and those friends who have been settled in life and career have found even more success and completeness in life. some have suffered loss of health, of loved ones, of child, a breast, a business or two, a mate or a home yet they rise above and keep going. I learned that my friends are resilient and strong with big hearts.
A few friends have moved and found lives fuller and happier in other parts of the world. I love that !!! I noticed friends around the ages of 45-60 have found their artistic talents or followed their dreams passionately. Some who have taken up art, jewelry making, voice or music talents, and some expanded their business' or created new exciting ones ( like Karen who moved to Costa Rica, bought a retreat for rental income, started a fishing business with a friend, is becoming quite the photographer, neuter-spay animals and help young girls, especially indigenous young ladies in finding their inner strengths and saving them from prostitution. All her philanthropic dreams coming true). I miss our rock hounding hikes, or shall I say Boulders?
Then there is Sweet, Lovely Constance. My special girlfriend-sister. Thank you for your generosity and home for both Douglas and I... Her home, ambiance, three boutiques, jewelry making, sewing-designing talents, music passion on piano and vocals, her wonderful son, and all the sweetness she has offered for so many years back to when we shared the same house in Montford in 1991, then to when I worked for her on and off part time through out the years and our budding friendship. I admire you so very much. As I do all my Friends who are constantly surprising me......You know who you are: too many names to mention...Thank you for spending time with me(or trying to) and sharing your lives, dreams and even sadness. Aimee I loved being with you and the boys. Jack and Leslie thank you for airport shuttle but missed more quality time. Mary and Chuck great times in your garden and in the outdoors and looking forward to next big vacation!! brigid, Chris, Betty, Louise, Leah, Marita and Hank you all have really moved into a great time of your lives with creative juices flowing !!! Keep it up I so admire you all. James, Lane, Ian, Hector, Halo, Will, Breakfast club boys, JD and all the males with whom I spent time....Love ya's. Thanks for keeping Doogie in line (hahahaha) Axel your home was a blessing in a natural way !!! Nancy and Thad you make me laugh. Nice having lunch with the girls at laughing seed and enjoying a much missed "Harmony Bowl" and to Gina, David and Tiffany for your healing touch.(sorry I missed Cissy and Joan...Keep on healing and so happy for new kidney !!) Leah we tried and I think we have Karma. We seem to miss each other in Ann Arbor and now in Asheville so please let me know when you are coming here and hopefully I can meet Martin. Avian, you are a mother figure and have been since we first met when I was a babe at 21 years old.....That means so much. Mary G. I miss seeing you in Asheville !!! But always great we keep in touch weekly. I had a blast with my family in Black Mountain !!! Love you Pete and Paula!! Keep me tuned in. To the rest of you I could not see you know my love !!!
The city is not the same in so many ways as you all know. I will save that for another blog where I can vent and brag !!! ALL I can say is that the changes in Asheville which have occurred over the past 2 years is astounding. I am amazed at the growth, the influx of very wealthy folk, people from other cultures spicing it up, more stores and restaurants, higher cost of living, 10.9% hike in cost of real estate in just one year, and all the vibrant city life usually saved for NYC and bigger towns around the globe. The most amazing thing to me was the fast growth without a real city plan that can accommodate the growth in a healthy, realistic way. My perspective. I am concerned for the people who have lived there for so long making the town what it is because of the high cost if living. I hope the powers that be will not allow another Vail, but with Tiger Woods class act golf course atop our lovely mountains, it is probably a dun deal. Million and billion dollar homes are being built as we speak. Let's hope the service industry can afford to stay. Who will prepare, serve and grow the food? Clean the streets? Volunteer for civic events? We shall see.........
That is it for now...........See the rest of you friends upon next return.
Monday, October 8, 2007
welcome home !!!
Wow, I was gone for almost three weeks which flew by in so many ways yet seemed like eternity in others. I am a home-body. I know this about myself so it is no surprise I love being at home, in our garden, at the lake cottage, shopping at the farmers market on Wed's and Sat's, being a member of the co-op, driving the least amount, my Yoga class for those with special needs(Yes, brothers hold off on jokes for now !!!) P.T. and all the things I love here. I also am so comfortable in my bed and in my own healing surroundings as if we tailored the entire home for my health care needs.It fits. Douglas says the same. We live in a very peaceful environment and we love it.
Missing family and friends is the toughest part of it all. I so enjoyed the breakfasts and lunches with loved ones. The serendipitous moments were great too. I went with no agenda and left with a full calender of meetings, dates and events which were filled with joy and memories of a life past lived. I still am happy to say I made the right move at the right time.....Minus the total breakdown of Michigan's economy. I still feel at peace with it all.
For those of you whom I did not get a chance to see please understand I had to pace myself like a snail and was in bed most nights by dark. I had many days when I was unable to get out and be sociable. Some days due to pain from city walking on brittle bones and some from just being someone with lupus on vacation. Accepting the flow helps tremendously, yet I missed seeing so many people !!! Next time if you will still have me?
Garden is still kicking out peppers, greens, root veggies in process, herbs, beans and even tomatoes. Thanks to all who picked, watered and checked on things while gone !!!!! I am glad some food went to bellies not waste. Everything looked great. Today I made an awesome pesto for fall and a batch of fresh tomato sauce. MMMMMMM.
I realize that no matter where you are you are there. It is your home for that time period and sometimes you move on. For now I am "HOME" and home is where the heart is for this moment in space.........Or OM is where the heart is Bros.......I hope you all had a wonderful September and will continue to enjoy our global warming fall !!!!
Hugs
A
Missing family and friends is the toughest part of it all. I so enjoyed the breakfasts and lunches with loved ones. The serendipitous moments were great too. I went with no agenda and left with a full calender of meetings, dates and events which were filled with joy and memories of a life past lived. I still am happy to say I made the right move at the right time.....Minus the total breakdown of Michigan's economy. I still feel at peace with it all.
For those of you whom I did not get a chance to see please understand I had to pace myself like a snail and was in bed most nights by dark. I had many days when I was unable to get out and be sociable. Some days due to pain from city walking on brittle bones and some from just being someone with lupus on vacation. Accepting the flow helps tremendously, yet I missed seeing so many people !!! Next time if you will still have me?
Garden is still kicking out peppers, greens, root veggies in process, herbs, beans and even tomatoes. Thanks to all who picked, watered and checked on things while gone !!!!! I am glad some food went to bellies not waste. Everything looked great. Today I made an awesome pesto for fall and a batch of fresh tomato sauce. MMMMMMM.
I realize that no matter where you are you are there. It is your home for that time period and sometimes you move on. For now I am "HOME" and home is where the heart is for this moment in space.........Or OM is where the heart is Bros.......I hope you all had a wonderful September and will continue to enjoy our global warming fall !!!!
Hugs
A
Tuesday, September 4, 2007
crazy sexy cancer
http://crazysexycancer.com
Check out the link.......... It is kind of what I am attempting to do with lupus (my story as well as others). It inspired me as did this other site called "Voices of Lupus" project. I spoke with the writer-graphic designer and she wants to do something similar as well in print. It is raw and in your face yet funny and hopeful. My idea is to have a journal-video-blog DVD attached to a book which can be read and watched for those who are more movie oriented. I like old fashioned books best but video captures raw moments, tender times and the moments or experiences one can only see with a peephole into one's life. "A Lupus peep show" so to speak. Multimedia combination of written word, recorded voice, photos, video and journal entries. Along with other peoples input. Music, art, poems too. Capture moments never seen or spoken.....Let it show my withdrawn veins while the nurse takes half hour to find one which will give a bit of blood or accept the toxic chemicals called chemo, or all the bruises which mysteriously form from barely being touched. "Really, Doug does not beat me...these bruises appear in the middle of the day and I wonder: did I fall and forgot?" No...I just bruise easily and that can be exploited too. I have given up on vanity and being pretty. There has to be a great quote somewhere for this one? I still have my personality.............heehaw
Very inspirational. "Now, is there a drug for energy Dr's?" I get so tired and nauseous it's always something. Today I will try to eat dinner out of the garden with lovely leftover trout from my great friends Steven and Kitty !!! So tasty !! I made a peach, tomato, caper, lime, olive, onion and hearts of palm escabche and baked it in the oven.............with acorn squash. Add some steamed kale and I am in heaven. Shaky stomach yesterday. My neighbor took me out for dinner. I felt bad taking most of it home but I did enjoy her company and some comfort food. I wore these new jeans I bought at TJ Max in the girls Dept. size 5. I have to take them in now because my butt, due to it's increasing flatness, allows pants to slide down fairly easily, and there will be no cracks of my a__ showing "fo sho".
Tried taking off the pain patch again for a couple days but I see how it keeps the pain right within manageable ranges so I can push a little harder in PT and still sleep. Maybe today I can curl 4 pounds instead of 3? Little steps I have learned lead to huge leaps if one dares to take that first shuffle. It has taken me a year but I walk with out aid(90%) of the time and I am not in level 10 pain all the time. I can cook, drive close to home, shop and do other fairly normal things. My friend Dale has really inspired me beyond words to keep on truckin !!!
On a personal note....Please call, just don't call before 10 am, between 3-5 or after 8 pm. You will likely get the machine and hang up in frustration that every time you call you get the machine. Well how do I know you call unless you leave a message? Not all callers show ID. So please leave messages. Sometimes I am in the garden or outside where the phone will not reach. Sometimes I am napping or watching a compelling movie. Sometimes I just do not want to talk because it takes too much energy. Be patient. You know who you are................I do not always call everyone else either. Big family, you understand? I love and miss my friends and family and right now I just do not have all it takes to hold the phone and repeat the same story over and over. Letters or cards are nice too. But I know you are there. Check the blog this is the best way for me to communicate. !!!
Much Love and a Bit of Whining
Angela
Check out the link.......... It is kind of what I am attempting to do with lupus (my story as well as others). It inspired me as did this other site called "Voices of Lupus" project. I spoke with the writer-graphic designer and she wants to do something similar as well in print. It is raw and in your face yet funny and hopeful. My idea is to have a journal-video-blog DVD attached to a book which can be read and watched for those who are more movie oriented. I like old fashioned books best but video captures raw moments, tender times and the moments or experiences one can only see with a peephole into one's life. "A Lupus peep show" so to speak. Multimedia combination of written word, recorded voice, photos, video and journal entries. Along with other peoples input. Music, art, poems too. Capture moments never seen or spoken.....Let it show my withdrawn veins while the nurse takes half hour to find one which will give a bit of blood or accept the toxic chemicals called chemo, or all the bruises which mysteriously form from barely being touched. "Really, Doug does not beat me...these bruises appear in the middle of the day and I wonder: did I fall and forgot?" No...I just bruise easily and that can be exploited too. I have given up on vanity and being pretty. There has to be a great quote somewhere for this one? I still have my personality.............heehaw
Very inspirational. "Now, is there a drug for energy Dr's?" I get so tired and nauseous it's always something. Today I will try to eat dinner out of the garden with lovely leftover trout from my great friends Steven and Kitty !!! So tasty !! I made a peach, tomato, caper, lime, olive, onion and hearts of palm escabche and baked it in the oven.............with acorn squash. Add some steamed kale and I am in heaven. Shaky stomach yesterday. My neighbor took me out for dinner. I felt bad taking most of it home but I did enjoy her company and some comfort food. I wore these new jeans I bought at TJ Max in the girls Dept. size 5. I have to take them in now because my butt, due to it's increasing flatness, allows pants to slide down fairly easily, and there will be no cracks of my a__ showing "fo sho".
Tried taking off the pain patch again for a couple days but I see how it keeps the pain right within manageable ranges so I can push a little harder in PT and still sleep. Maybe today I can curl 4 pounds instead of 3? Little steps I have learned lead to huge leaps if one dares to take that first shuffle. It has taken me a year but I walk with out aid(90%) of the time and I am not in level 10 pain all the time. I can cook, drive close to home, shop and do other fairly normal things. My friend Dale has really inspired me beyond words to keep on truckin !!!
On a personal note....Please call, just don't call before 10 am, between 3-5 or after 8 pm. You will likely get the machine and hang up in frustration that every time you call you get the machine. Well how do I know you call unless you leave a message? Not all callers show ID. So please leave messages. Sometimes I am in the garden or outside where the phone will not reach. Sometimes I am napping or watching a compelling movie. Sometimes I just do not want to talk because it takes too much energy. Be patient. You know who you are................I do not always call everyone else either. Big family, you understand? I love and miss my friends and family and right now I just do not have all it takes to hold the phone and repeat the same story over and over. Letters or cards are nice too. But I know you are there. Check the blog this is the best way for me to communicate. !!!
Much Love and a Bit of Whining
Angela
Saturday, September 1, 2007
Where has this year gone?
It has been a year since lupus kicked my butt and crashed my bones. I remember not knowing if I would ever walk with out assistance again. I remember grieving for all the things I would never do again and for all the loss. I also remember feeling incredibly empty and scared while keeping a stiff upper lip for fear of showing my pain. I kept strong for those who would care for me. They were scared too. Every time someone looked at me with those sad eyes I could see the questions running through their minds like water flowing over a rocky cliff in uneven swells. I can feel, in my chest, the butterflies and waves of anxiety and dark nights with sleepless paralysis. afraid to move or be moved for fear a bone would break or I might fall and end up in a wheel chair for good. The fragility was something never before felt at that depth. I have prided myself on my strength in many areas. I know I am strong and able to do many things, at once even, but at that moment last year all I could do was roll around on my walker, sleep and stare at the wheelchair in the corner of the room wondering if and when that would be my ride. It was and sometimes still is....but the feeling of doom is gone. Bones feel stronger. Shoulder is replaced with some pain leftover, to be expected. I sleep a little better and feel more at ease seeing where I am compared to where I was. I am glad I did chemo and continue to take the meds which keep me alive. The handful of pills and the many visits to Dr.'s, PT's, hospitals etc each week remind me I am not out of the dark. The monthly lab tests and the waiting for results like a puppy anxiously waiting for her owner to return with a treat is still a part of my life. The four days a week I drive myself and drag my ass in to physical therapy and yoga, whether I feel like it or not, is still my life. I am a survivor yet a patient in the end. I also have patience !!! I watch over or think about everything I eat, say, think, read, feel, do, drink, fear, accept, grieve and desire. I analyse myself under a microscope to make sure I am not making myself sick. It is tiresome, yet a good tool to have in these unsettling times . My life seems very lonely to some and admirable to others. I hear comments like, "it must be nice to have all day to do whatever you want". Yea !! like sleeping or doing anything to avoid thinking about the pain I feel , my fear, uncertainty, grief, anger, exhaustion, weakness or how tired to the core I really am is just great !! All this time in the world...........People do not realize how lucky they are to have a career or a child they love and raised. I will not have a grandchild to bounce on my knee...all that time on my hands will be great.....How can I tell everyone that this is not the life of Riley? Nor is it sheer hell either. It is a brief blip in a life a joy and many other experiences. It is just one year. One experience. i have all the time in the world to have many others.............."Wouldn't it be nice"?
Sometimes a girl's gotta vent. It's all good !!!!
Sometimes a girl's gotta vent. It's all good !!!!
Thursday, August 23, 2007
Post Fundraiser Walk Update
The first question everyone asks after a fundraiser is "How much money did you-we make?".
I find this a bit offensive purely because the money is not the only goal in having these events. The funds are very important, don't get me wrong, and we could not have the high level of research and care we have with out public sponsors and donors, yet the most important part of these events is the show of support from friends, family and the community. The second is educating and bringing awareness to this devastating disease. "If the disease does not kill you the side long term effects and medications will". This is one of the messages we want to get out when it comes to research fund drives. I want people to understand that lupus is a life long disease that continues to affect the patient even after years of remission. The side effects from current treatments leave some of us with out bones, swollen, half crazy, nauseous, tired, weak, poor, with out much social or professional life, stomach problems, heart issues, high blood pressure, unable to bear children, sometimes with cancer or other secondary illnesses and open to all kinds of infections. The toll taken on the kidneys, liver, heart and other major organs is devastating as well. We are talking about toxic drugs and a disease that attacks it's own tissue. There is no real end in sight for severe lupus patients. I want people to walk away from these events knowing it is their duty to help find better treatments and a cure because someone you know does or will have lupus and it could be your daughter, wife, sister, brother or son. The other important goal is for the public to see we are also strong, willful and courageous people with a great attitude under the worst of circumstances and we are VITAL SURVIVORS !!! There is a message of hope in all this as well and this group shines where this is concerned. The support and positive attitudes are strong and rise above the ashes of the disease. We are not just patients or sick people we are fighters and yet have accepted our fate and we handle it with grace. We do this in hopes of helping someone who is newly diagnosed and to survive. We do it for our loved ones and for our own sanity. In the end we are blessed to have had the experiences as a teacher of strength, fortitude and courage. We do not have our hands out for funds for our own selfish needs because we have already travelled this path. We do this for future generations. So wake up and smell the roses and get involved. Don't forget to tell that person whom you know has lupus how inspirational and strong they are. This is most healing !!!
YES we raised money and we had @300 people show up even in the pouring rain. I give thanks for everyone who made the effort on a Sunday morning to show your support and for those who just came to find out more and help. The local football team at Trenton High helps every year, the community of Woodhaven and Trenton really support this event and that is what I love !!!
AND we still need funds. If you can even spare $10.00 per month ( three Starbucks) it would help tremendously.
I give thanks to all my loved ones who sent money and who came to the walk !!!!! I love you guys...Photos soon to follow !!!
I find this a bit offensive purely because the money is not the only goal in having these events. The funds are very important, don't get me wrong, and we could not have the high level of research and care we have with out public sponsors and donors, yet the most important part of these events is the show of support from friends, family and the community. The second is educating and bringing awareness to this devastating disease. "If the disease does not kill you the side long term effects and medications will". This is one of the messages we want to get out when it comes to research fund drives. I want people to understand that lupus is a life long disease that continues to affect the patient even after years of remission. The side effects from current treatments leave some of us with out bones, swollen, half crazy, nauseous, tired, weak, poor, with out much social or professional life, stomach problems, heart issues, high blood pressure, unable to bear children, sometimes with cancer or other secondary illnesses and open to all kinds of infections. The toll taken on the kidneys, liver, heart and other major organs is devastating as well. We are talking about toxic drugs and a disease that attacks it's own tissue. There is no real end in sight for severe lupus patients. I want people to walk away from these events knowing it is their duty to help find better treatments and a cure because someone you know does or will have lupus and it could be your daughter, wife, sister, brother or son. The other important goal is for the public to see we are also strong, willful and courageous people with a great attitude under the worst of circumstances and we are VITAL SURVIVORS !!! There is a message of hope in all this as well and this group shines where this is concerned. The support and positive attitudes are strong and rise above the ashes of the disease. We are not just patients or sick people we are fighters and yet have accepted our fate and we handle it with grace. We do this in hopes of helping someone who is newly diagnosed and to survive. We do it for our loved ones and for our own sanity. In the end we are blessed to have had the experiences as a teacher of strength, fortitude and courage. We do not have our hands out for funds for our own selfish needs because we have already travelled this path. We do this for future generations. So wake up and smell the roses and get involved. Don't forget to tell that person whom you know has lupus how inspirational and strong they are. This is most healing !!!
YES we raised money and we had @300 people show up even in the pouring rain. I give thanks for everyone who made the effort on a Sunday morning to show your support and for those who just came to find out more and help. The local football team at Trenton High helps every year, the community of Woodhaven and Trenton really support this event and that is what I love !!!
AND we still need funds. If you can even spare $10.00 per month ( three Starbucks) it would help tremendously.
I give thanks to all my loved ones who sent money and who came to the walk !!!!! I love you guys...Photos soon to follow !!!
Friday, August 17, 2007
Butterfly Walk is Sunday
Look at my web site angela@lupusadvocacy.org for further information on the walk or go to http://www.amsterlupus.org/. It all, 100%, goes to lupus research at The University of Michigan lupus research clinic. Make a donation of $3.00 or $3,000 or walk or wheel for $15.00 includes a breakfast. See you there outside of Detroit.
Αληθεια-Truth: Greek Word Study- "patience" μακροθυμια (pronounced ...
The verb form is makrothumeo “to be patient” and the adverb is makrothumon “patiently” and makros “long, distant” (Robinson 85). Greek words that are ...
Patient - Wikipedia, the free encyclopedia
A patient is any person who receives medical attention, care, or treatment. The person is most often ill or injured and in need of treatment by a physician ...
I can not help but believe that there is a connection to these two words because one must bare an amazing amount of patience to be a patient. The long waits in Dr.'s offices, waiting for tests results, diseases which take months and even years to diagnose, long days feeling tired and sick, endless sleepless nights, going from one medication or treatment to another finding the perfect one, careers and lives on hold, families challenged and the list continues. One must hold tight to waiting and the eternal limbo with a long-term illness. When people speed pass me on the road or act inpatient in the grocery line I wonder if they understand how flipping hard it is for me to just stand there? I want to ask them why they can not simply wait, perhaps strike up a conversation? Then I want to say : "Hey man I am on chemo, had three hips replaced, standing on thin and dying bones and fatigued as hell due to a life threatening illness so chill out and be glad you are not in Iraq getting the crap blown out of you. So There".
I walk through the halls of the hospital with waiting rooms filled with sad eyes and worried looks of loved ones, people asleep on benches, Dr.'s running from room to room trying to stick to the schedule of fifteen minutes per person so insurance companies and the head chiefs are happy. That is patience.
I think we grow a country of fast food inpatient people who can not even stay off the phone for five minutes while driving to look around, pay attention, smell the roses and live in the moment. It is an amazing moment if you are breathing, fed, loved and loving. I am blessed to have learned this and it made me a better person.
So now as I wait for more tests and more positive chemo results I still heal, go to PT three times a week, Yoga once a week, garden and carry on with a minimal existence that is simple and worth waiting for. And my husband comes home tomorrow after two weeks in Asheville so I am a Happy girl !!!! Now he is worth waiting for !!!!!
Αληθεια-Truth: Greek Word Study- "patience" μακροθυμια (pronounced ...
The verb form is makrothumeo “to be patient” and the adverb is makrothumon “patiently” and makros “long, distant” (Robinson 85). Greek words that are ...
Patient - Wikipedia, the free encyclopedia
A patient is any person who receives medical attention, care, or treatment. The person is most often ill or injured and in need of treatment by a physician ...
I can not help but believe that there is a connection to these two words because one must bare an amazing amount of patience to be a patient. The long waits in Dr.'s offices, waiting for tests results, diseases which take months and even years to diagnose, long days feeling tired and sick, endless sleepless nights, going from one medication or treatment to another finding the perfect one, careers and lives on hold, families challenged and the list continues. One must hold tight to waiting and the eternal limbo with a long-term illness. When people speed pass me on the road or act inpatient in the grocery line I wonder if they understand how flipping hard it is for me to just stand there? I want to ask them why they can not simply wait, perhaps strike up a conversation? Then I want to say : "Hey man I am on chemo, had three hips replaced, standing on thin and dying bones and fatigued as hell due to a life threatening illness so chill out and be glad you are not in Iraq getting the crap blown out of you. So There".
I walk through the halls of the hospital with waiting rooms filled with sad eyes and worried looks of loved ones, people asleep on benches, Dr.'s running from room to room trying to stick to the schedule of fifteen minutes per person so insurance companies and the head chiefs are happy. That is patience.
I think we grow a country of fast food inpatient people who can not even stay off the phone for five minutes while driving to look around, pay attention, smell the roses and live in the moment. It is an amazing moment if you are breathing, fed, loved and loving. I am blessed to have learned this and it made me a better person.
So now as I wait for more tests and more positive chemo results I still heal, go to PT three times a week, Yoga once a week, garden and carry on with a minimal existence that is simple and worth waiting for. And my husband comes home tomorrow after two weeks in Asheville so I am a Happy girl !!!! Now he is worth waiting for !!!!!
Thursday, August 9, 2007
Voices of lupus
Check out this site. A friend Ginger shared it with our lupus group and it is kind of what I am doing with my book. I want to hear stories from lupus patients, family and friends which are inspirational and honest. It is important to let the world know what we go through and what our loved ones go through. If you would like to be in my book either anonymous or named please let me know. It could even be a poem or a journal entry...Whatever you want to share. I have a publisher and is waiting for me to get over writers block so help me by sending me inspiration. Blessings Angela
http://www.lupusvoice.com/Home.html
http://www.lupusvoice.com/Home.html
Monday, August 6, 2007
much ado about nothing
Hearts are hearts in physical and in ethereal forms. My grandparents have both had heart attacks in the past few months. My friend has had lupus related heart issues. I feel too much emotionally.......and our common bond that is "we feel" !!!! What and how we feel is the question.....My grandmother is reading a book on "living with heart failure".....of which heart do we speak? Is there a connection? Do our emotions relate directly to our organ? To what degree do we sense our emotions to the degree at which we can avoid the heart attach? Do we really want to see our emotions to that degree? "I DO" !!!! I have had heart issues with lupus and am on heart meds etc.....I have a systolic murmur and high BP. I am examining this aspect of my life. I saw my lupus Dr. today and he said "You are looking good for being the only patient I have with every complication possible and fulfill every criteria for lupus............" Well....that is great but what does that mean? I guess I am lucky to be alive and feeling "healthy" for whatever that is worth. So tests are ordered, blood drawn, urine given, body fully examined and daily chemo pills(cellcept) starting again tomorrow. I come home and feel lucky to have care yet not quiet sure how lucky I am??? on a heart feeling level. The other side of the fence is that I wish some days were just days without being labeled "sick"...........With that said I am not sick I am healing. I refuse to accept being set aside for statistics. I will focus on that !!! I will find my way though this thick forest of fatigue. My Dr. "Joe" is great because he encourages(even pushes) my gardening knowing that is my workout and meditation and encourages exercise !!!. He also has me paired with a fellow patient friend with whom we work out. He also wants to experience the amazing heirloom varieties which we have been able to grow, and how could you blame him? His mom is or was an avid gardener and it healed her heart.That is the insight healers need to have.
Growing love, tolerance, peace, hope,food and understanding is the whole point. My heart aches for the healing of worldly issues since I was 4 years old. I know I took on a big part of that healing as I thought I was once a conduit for this work. Call it spiritual healing or whatever you want. I do feel others pain. Always have and always will. Now I must separate myself and heal my own pain. That is the quest for the week..........Oh where to start. In the moment perhaps?
Growing love, tolerance, peace, hope,food and understanding is the whole point. My heart aches for the healing of worldly issues since I was 4 years old. I know I took on a big part of that healing as I thought I was once a conduit for this work. Call it spiritual healing or whatever you want. I do feel others pain. Always have and always will. Now I must separate myself and heal my own pain. That is the quest for the week..........Oh where to start. In the moment perhaps?
Wednesday, August 1, 2007
Feeling My Oats
"Every generation has the obligation to free men's minds for a look at new worlds....to look out from a higher plateau than the last generation"
Ellison S. Onizuka
I worked in the garden today with Douglas and picked our first cherry tomatoes from the vine and a rare yellow heirloom cuke which is round like a ball. What a great feeling. I also observed the delicate flower of an okra plant which is beyond words. I had no idea. Then sat in wonder of the hibiscus or "moon flower" growing larger every day producing huge blooms of pink and white. I feel how strong the urge for nature is to grow and how it take so little for this process. It is just a miracle. Through all the draughts this past month the grass is dead but flowers and food are in abundance. If anyone wants any zucchini please come pick.
I had a month of shoulder replacement recovery and now can drive !! Freedom at last. Douglas is here this week and my family has been visiting as well as girlfriend Constance. I feel so full and happy. It will be a long job for Douglas in NC but it is good for our bank account and he is loving the design aspects. It will be a fabulous exterior renovation. It look like it will drag on till winter which is not the optimal for us but I might go down in September after friend Sharon visits. If anyone knows of a place where we can stay-rent in downtown Asheville let us know. House sitting included.
On a "Blue Funk" note, as my Grandma Gross says, my Popa Gross had a heart attach yesterday and is in the hospital recovering. My friend here just had a lumpectomy yesterday. There are a few others who I will hold in my thoughts as well.
Thank you Dad Saul for the lovely framed piece and for introducing me to Lola. She is a bright and sweet woman. I can see how you make each other happy. Good to see Uncle Myron too.
During these times of utter chaos in the world it is my hope and dream to see a better place evolve from the ashes of this time. Let the fear and fighting end. Take the word Greed out of the dictionary and let;s make it a rule that everyone must perform one good deed every day. Call your elderly neighbor, offer to take food to someone who is ill, write a hand written card telling someone you love just what they mean to you, volunteer or simply open the door for someone at the grocery store. Smile and be happy to be alive and making a difference. Don't sweat the small stuff....life is too short to waste. Spend it well and it will give back tenfold. I am on a cliche kick.....Love A
Ellison S. Onizuka
I worked in the garden today with Douglas and picked our first cherry tomatoes from the vine and a rare yellow heirloom cuke which is round like a ball. What a great feeling. I also observed the delicate flower of an okra plant which is beyond words. I had no idea. Then sat in wonder of the hibiscus or "moon flower" growing larger every day producing huge blooms of pink and white. I feel how strong the urge for nature is to grow and how it take so little for this process. It is just a miracle. Through all the draughts this past month the grass is dead but flowers and food are in abundance. If anyone wants any zucchini please come pick.
I had a month of shoulder replacement recovery and now can drive !! Freedom at last. Douglas is here this week and my family has been visiting as well as girlfriend Constance. I feel so full and happy. It will be a long job for Douglas in NC but it is good for our bank account and he is loving the design aspects. It will be a fabulous exterior renovation. It look like it will drag on till winter which is not the optimal for us but I might go down in September after friend Sharon visits. If anyone knows of a place where we can stay-rent in downtown Asheville let us know. House sitting included.
On a "Blue Funk" note, as my Grandma Gross says, my Popa Gross had a heart attach yesterday and is in the hospital recovering. My friend here just had a lumpectomy yesterday. There are a few others who I will hold in my thoughts as well.
Thank you Dad Saul for the lovely framed piece and for introducing me to Lola. She is a bright and sweet woman. I can see how you make each other happy. Good to see Uncle Myron too.
During these times of utter chaos in the world it is my hope and dream to see a better place evolve from the ashes of this time. Let the fear and fighting end. Take the word Greed out of the dictionary and let;s make it a rule that everyone must perform one good deed every day. Call your elderly neighbor, offer to take food to someone who is ill, write a hand written card telling someone you love just what they mean to you, volunteer or simply open the door for someone at the grocery store. Smile and be happy to be alive and making a difference. Don't sweat the small stuff....life is too short to waste. Spend it well and it will give back tenfold. I am on a cliche kick.....Love A
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