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.
Tuesday, February 19, 2008
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
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