It was brought to my attention by a dear friend that at times it is challenging for her to know how to be a friend to me due to my own challenges with lupus-bones. I totally understand this. I have had friends and family with whom my own lack of understanding or perhaps issues kept me from deepening my relationship or even sustaining it. I have let some drop to the way side because I found their weight too heavy for me to help carry. I know one thing for sure I do not want anyone to be my friend or supporting family member unless they completely want and can do. I know the difficulties of not knowing what to say after a friend has had her breast removed or another a pace maker placed near age 50. I also know how hard it is for me to see my grandparents aging and struggling with the denial which goes along with the end stages of life. My Popa Gross is close to the end but he and my grandma can not let go. So they keep us at a distance and we gratefully accept it because we are helpless to do anything.
I think this is based on fear. Our own fear keeps us from facing illness and death because we all know we will end up there one day. Death is inevitable and so are physical challenges and aging. To avoid this is to walk in denial and dig a whole in the sand. I do it and you do it. We all do. When I volunteered for hospice my first "client" was an 8 year old girl who's mom just died. I was 8 when my mom died. I could not stay with it for too long. It was too close to home and at age 23 I was ill equipped to handle it fully. I ran until later I went back and faced this fear head on. I now know death to be something we should not fear. Pain and suffering is a different story. I am speaking of immortality. This is what we each desire to avoid.
In my own life I can honestly say this is no longer an issue. I have been with people while they go through the dying way too many times and have been present after they have died. I have spent most of my life around sick people, myself included as I faced my own death several times, yet I see myself as a vibrant being. I do not see myself as sick. Once perhaps, but not now. I am a warrior like every other person who survives with an illness or disability. We are the ones who can leap tall buildings and jump mountains.
I encourage you to reach out to an elderly person, sick person, a child who is surviving cancer or someone who finds themselves homeless. There will be more like this in your future and if you face it now you will be that much more prepared for this future. Carpe' Diem.............................Be like the duck who let's the water drip off it's back and continues to move forward. Grace is a gift and also can be something one works hard for. Pray,meditate,be silent and it will come if you really want it in your heart and soul. The spirit can handle anything.
Tuesday, June 30, 2009
Saturday, June 27, 2009
Feeling blessed and know it !!!
Sometimes I feel so blessed that I can not contain myself. I also have down times but not so often. I think when one faces death, loss and disability (and rises above) there is a miracle at hand which deserves attention and acknowledgment. To be alive, loved, full bellied, able to move about, living in own home and enjoying the freedoms we enjoy.................is a grand thing. I wanted to say "I am a lucky human". Then add the good loving of a good man and you have a very happy woman. I do not want to ever be remiss in stating this loud and clear !!!! I guess I was blessed to be born into my family and situation no matter how challenging life has been(mom dyeing,divorce,eating beans and rice for months etc). I have always known I was loved. No matter what; I always knew how blessed I was and felt gratitude for everything(except for a few teenage moments). Now is a good time to remember this. Especially those of us who live in the US. We really do not know or can conceive of the lives others face in countries not so free or rich. Remember this when you complain about the traffic, bad weather, noisy neighbors, snappy check out lady or whatever small issues we turn into tragedies. It could always be worse.
Keeping it in perspective.................Angela
Keeping it in perspective.................Angela
Friday, June 26, 2009
Update...........
Well summer has hit us big time. Yankees are not used to the intense heat and humidity we have experienced this past week. Brown outs in Detroit area make it hard on the sick and elderly. Luckily we only had a few minor power outages due to a storm yesterday. The storm was amazing. I love watching and smelling them roll in as long as it remains safe. The gardens needed it too.
Douglas finished a small "flower" garden along the front walk way which will be so nice once it grows in. Prairie grass will get 4-6 feet tall and I love the way it looks. Foxglove, lavender and delphinium. Less grass to maintain. Next planting is moving a bunch of blue spruce from a patch in the back, all clumped together, to the front as a road barrier. It is our intention they will survive. The last owners planted a bunch of seedling for later transplanting and they have gotten too big. We will have a Christmas tree from it too!!! So our property is coming along slowly. Doug gets a lot done for only being home a few months out of the year. I just do my veggies, herbs and flowers. Peas are coming in and lettuce is on its way out. The squash and beans are starting to flourish and should have more food in two weeks. I am enjoying it all and desire to share so come out and pick !!!!.
Last night we took advantage of another summer music concert on campus at the Power center. It was one heck of a show by Sharon Jones and the Dap Kings. An R and B, soul band. She reminded us of a female James Brown. It was too much fun. Usually the U concerts are tame and civilized (a little too much). This was not your typical show. People were dancing and they had audience participation. It was a powerful and happy show. We left feeling really happy and full of energy. There are more events ongoing on campus through the weekend. Then in July we have art fare. I usually can not handle it due to the sun and walking, but if I get the ramp in place for my power chair I will go with my umbrella. It is a very high end art show and I love seeing all the streets closed and restaurants spread out in the streets. It is one big family friendly party.
My nieces and sister are coming to visit in August and are attending our annual Butterfly Walk supporting lupus research at UM: "The Friends of Amster Lupus Fund" started by two friends who have been affected by lupus who decided to raise awareness and funds for a cure. I have not had a huge family-friend turnout at the walk due to circumstances which are unavoidable. This year it will feel great to have my southern peeps. Don't get me wrong Dad, Doug, Mary and one year My god father Morris and three of my dad's oldest friends, like uncles to me, all came and I was very happy and appreciated their support immensely. It always feels good to have back up for something as important as this. My friend Kitty made buttons and magnets for the event and has created a web site for lupus wearables etc. She is always so good to her friends and community. So this year I am happy to have family here, especially my girls. I never place expectations on people for my own interests.....and......I wish I could be there for my loved ones more because we all have our own "things" going on in life. I do the best I can to support loved ones as we all do. On that note..........do something nice for someone today. Maybe take your elderly neighbors something you grew or baked, volunteer, take your old magazines to a retirement center or simply smile at a stranger. Small things count !!!
Douglas finished a small "flower" garden along the front walk way which will be so nice once it grows in. Prairie grass will get 4-6 feet tall and I love the way it looks. Foxglove, lavender and delphinium. Less grass to maintain. Next planting is moving a bunch of blue spruce from a patch in the back, all clumped together, to the front as a road barrier. It is our intention they will survive. The last owners planted a bunch of seedling for later transplanting and they have gotten too big. We will have a Christmas tree from it too!!! So our property is coming along slowly. Doug gets a lot done for only being home a few months out of the year. I just do my veggies, herbs and flowers. Peas are coming in and lettuce is on its way out. The squash and beans are starting to flourish and should have more food in two weeks. I am enjoying it all and desire to share so come out and pick !!!!.
Last night we took advantage of another summer music concert on campus at the Power center. It was one heck of a show by Sharon Jones and the Dap Kings. An R and B, soul band. She reminded us of a female James Brown. It was too much fun. Usually the U concerts are tame and civilized (a little too much). This was not your typical show. People were dancing and they had audience participation. It was a powerful and happy show. We left feeling really happy and full of energy. There are more events ongoing on campus through the weekend. Then in July we have art fare. I usually can not handle it due to the sun and walking, but if I get the ramp in place for my power chair I will go with my umbrella. It is a very high end art show and I love seeing all the streets closed and restaurants spread out in the streets. It is one big family friendly party.
My nieces and sister are coming to visit in August and are attending our annual Butterfly Walk supporting lupus research at UM: "The Friends of Amster Lupus Fund" started by two friends who have been affected by lupus who decided to raise awareness and funds for a cure. I have not had a huge family-friend turnout at the walk due to circumstances which are unavoidable. This year it will feel great to have my southern peeps. Don't get me wrong Dad, Doug, Mary and one year My god father Morris and three of my dad's oldest friends, like uncles to me, all came and I was very happy and appreciated their support immensely. It always feels good to have back up for something as important as this. My friend Kitty made buttons and magnets for the event and has created a web site for lupus wearables etc. She is always so good to her friends and community. So this year I am happy to have family here, especially my girls. I never place expectations on people for my own interests.....and......I wish I could be there for my loved ones more because we all have our own "things" going on in life. I do the best I can to support loved ones as we all do. On that note..........do something nice for someone today. Maybe take your elderly neighbors something you grew or baked, volunteer, take your old magazines to a retirement center or simply smile at a stranger. Small things count !!!
Sunday, June 21, 2009
recap on last nights concert
Oh My Goodness !!! We had the most enjoyable evening. The opening "band" was "Sneakin Out" from Flint originally. They were a three member band with base, mandolin and a wacky percussionists who looked like Bruno with a Mohawk and wore a red fluffy skirt. Actually he was more sumo wrestler type. He played an old type writer like a piano. Funny and very smart and talented individuals. Then Pink Martini. I have to correct my last entry: There were twelve of them from all over and they are now living and based out Portland Oregon. They have a fourth CD coming out soon with them playing with the Portland Symphony. It should be good. The audience was mostly older folks which was interesting. I think it was a full house. Hill Auditorium is an acoustic heaven for musicians and listeners. We really enjoyed ourselves. We never go out at night. I am usually too tired or ready for horizontal mode early. Plus there is the budget we are on which only includes a little stipend for entertainment. We are quite good at creating our own entertainment. So all in all it was a good concert. I saw a few people who I know but did not scream " Hi!!". Pink Martini played songs from all over the world in the language it was written. The singer had to know Portuguese, Turkish, Spanish, Italian, French, Croatian, English and made up language. It was very fun and imaginative. they would be better heard in an outdoor park or a jazz club with a dance floor.
After a morning in the garden we have more winter squash planted another round of Detroit Red Beets. Douglas is working on the front flower-prairie grass bed. He is doing it really nice. It is summer now and feeling the heat. The garden needs to dry out a bit and de-bug. We have had more bugs which are new to us this year. All organic.
In one hour Dad and Mary will be here for Fathers Day. I am making dinner and we will do a garden walk.
For my other father Lawson................I love and miss you. I know you are in good hands and surrounded by your spawn. Wish we were there. You are a lucky and blessed man.
After a morning in the garden we have more winter squash planted another round of Detroit Red Beets. Douglas is working on the front flower-prairie grass bed. He is doing it really nice. It is summer now and feeling the heat. The garden needs to dry out a bit and de-bug. We have had more bugs which are new to us this year. All organic.
In one hour Dad and Mary will be here for Fathers Day. I am making dinner and we will do a garden walk.
For my other father Lawson................I love and miss you. I know you are in good hands and surrounded by your spawn. Wish we were there. You are a lucky and blessed man.
Saturday, June 20, 2009
Butterfly Walk Coming Soon
August 9th will be here before we know it. http://www.amsterlupus.org/. Please mark your calendars and try to make it. it is always fun and rewarding. Bring a hat and sunscreen and for some umbrellas. Two years ago it sprinkled a little. I just came home from the committee meeting and all your envelopes are stamped and ready to be sent. Thar's a personal invitation !!!! It was great seeing old faces I only see a couple times a year. Sweet women who work hard for the cause to raise awareness and funds for Lupus. Hat's off to ya !! Also go the new "Lupus Store" featuring a butterfly design by my dear friend kitty. http://www.cafepress.com/lupusstore
So it is a lovely day after two nights of intense thunder storms and heavy winds. Lots of flooding in the area and my garden is swamped. Too bad. It will have a few days to dry out. We really have enjoyed eating right out of the garden. We are spoiled. It has been slow this year though. The past few years we had much more produce by now but the late frosts and heavy rains have kept things from growing. I also lost seeds during the frost. Douglas is creating a lovely flower-herb and prairie grass bed along the front walk way. It will be so pretty and functional. The road traffic, while not heavy, can be loud. This should offer a little buffer and privacy so we can sit on the front porch peacefully. I love how in the old days, maybe some people still do, people sat on their front porch in the evenings when it was cooling down and talked to one another. My grandmother fed the squirrels out of her hand. This was the old fashioned neighborhood watch program.....You know what I mean. My grandparents knew every one's business and watched over us kids while we were playing. Do kids still play outside? TVs, computers, computer games and cell phones seem to be more enticing to our youth than walking through the woods, building forts, playing street hockey and all the things we did back in the day. We always had lemonade stands and bake sales. That was our ice cream truck money. I can still hear the musical sound of Harold's ice cream truck, like carousel music. We could hear him blocks away and went running for the change jar or my grandpa would empty the change from his pockets and buy us all ice cream. He was a hit with the kids for sure.
Tonight we are going to see Pink Martini playing at Hill Auditorium on campus.They are amazing. I have never seen them in person but I hear they put on quite a show. They are from all over the world but based out of Paris I think. Orchestral music with a Latin flare and dramatic yet humorous. This is one of the perks of living in a college town. There are always concerts and events happening especially in the summer. I have not been able to take advantage of most events due to my health and legs. This is a treat for sure. Check them out online if you like fun music.
OK this is where the topic turns to poop. Seriously. Yes stool. Not the raccoon poop either because we now seem to be raccoon free. They must have seen Doug's big trap and decided to split. Good !!!! I am talking about that lovely test where you have to collect specimens for the lab to make sure all the plumbing is working(so to speak). I started giggly wondering if the UPS guy will know what he is picking up to deliver? Can you imagine? I am twisted I know but really. Who ever thought of such a test? I don't mind doing urine samples but the other is slightly disturbing. Funny though. It is a thorough way to see how one is digesting and if there are any bacteria, parasites,cancers or viruses which need addressing with out swallowing a camera. They can see if there is blood or other issues as well. The up side is that this test is only needed every ten years or so. That's not a lab I would care to work for. OK I will stop. For those of you who know mine and Doug's humor you are smiling because there is an inside joke I will save for later.
But you should get one of these tests after the age of 40 and especially if you have a chronic or inflammatory disease. It's really easy. Do it for those you love. Then you can tell them you have your sh-- together. Hahahahaha..............................The end.
So it is a lovely day after two nights of intense thunder storms and heavy winds. Lots of flooding in the area and my garden is swamped. Too bad. It will have a few days to dry out. We really have enjoyed eating right out of the garden. We are spoiled. It has been slow this year though. The past few years we had much more produce by now but the late frosts and heavy rains have kept things from growing. I also lost seeds during the frost. Douglas is creating a lovely flower-herb and prairie grass bed along the front walk way. It will be so pretty and functional. The road traffic, while not heavy, can be loud. This should offer a little buffer and privacy so we can sit on the front porch peacefully. I love how in the old days, maybe some people still do, people sat on their front porch in the evenings when it was cooling down and talked to one another. My grandmother fed the squirrels out of her hand. This was the old fashioned neighborhood watch program.....You know what I mean. My grandparents knew every one's business and watched over us kids while we were playing. Do kids still play outside? TVs, computers, computer games and cell phones seem to be more enticing to our youth than walking through the woods, building forts, playing street hockey and all the things we did back in the day. We always had lemonade stands and bake sales. That was our ice cream truck money. I can still hear the musical sound of Harold's ice cream truck, like carousel music. We could hear him blocks away and went running for the change jar or my grandpa would empty the change from his pockets and buy us all ice cream. He was a hit with the kids for sure.
Tonight we are going to see Pink Martini playing at Hill Auditorium on campus.They are amazing. I have never seen them in person but I hear they put on quite a show. They are from all over the world but based out of Paris I think. Orchestral music with a Latin flare and dramatic yet humorous. This is one of the perks of living in a college town. There are always concerts and events happening especially in the summer. I have not been able to take advantage of most events due to my health and legs. This is a treat for sure. Check them out online if you like fun music.
OK this is where the topic turns to poop. Seriously. Yes stool. Not the raccoon poop either because we now seem to be raccoon free. They must have seen Doug's big trap and decided to split. Good !!!! I am talking about that lovely test where you have to collect specimens for the lab to make sure all the plumbing is working(so to speak). I started giggly wondering if the UPS guy will know what he is picking up to deliver? Can you imagine? I am twisted I know but really. Who ever thought of such a test? I don't mind doing urine samples but the other is slightly disturbing. Funny though. It is a thorough way to see how one is digesting and if there are any bacteria, parasites,cancers or viruses which need addressing with out swallowing a camera. They can see if there is blood or other issues as well. The up side is that this test is only needed every ten years or so. That's not a lab I would care to work for. OK I will stop. For those of you who know mine and Doug's humor you are smiling because there is an inside joke I will save for later.
But you should get one of these tests after the age of 40 and especially if you have a chronic or inflammatory disease. It's really easy. Do it for those you love. Then you can tell them you have your sh-- together. Hahahahaha..............................The end.
Wednesday, June 17, 2009
back on earth
Douglas is home after a long period away from home "Thank God". His project in NC was very successful and stunning. A multi-plex movie theater and bar-food area with mixed media and event space turned great. The opening was wonderful with people from the past and present in Asheville who have supported Madaras Design and Douglas. It was heart warming. The client and his crew flew in from all over and were wonderful. Heritage construction did an amazing job as usual. Our friends Casey and Mary (Heritage) are the best people and talented beyond the normal GC company. Their personal touch goes a long way. Their guest house and hospitality was outstanding. We love being with them. Our friend Constance as always provided us and especially Douglas with so much support and home cooking. She rocks as usual sweet C. I miss our friends for sure !!! Our Asheville crew is incredibly talented and dedicated and still are working on finishing the project which will have a long finish. Mucho Gracias !!! There are still two more theaters within the grand multiplex which need renovating. So we shall see. Hats off to everyone !! The architects from Texas equally amazing !! and client Bill and his wife Susan gracious and devoted to this vision of a multi use theater/preforming arts center and in providing an artistic space for film and other performance while utilizing local talent. I applaud their vision. Check out "Magnolia Films". All you art film junkies know the name. This is who created the vision and made it happen. If you live in Asheville support Carolina Theaters on Hendersonville Rd. South Hwy 25. It is worth the visit as an art space and as an entertainment space. Plus local brews and wine. Artists are welcomed to present their work for future shows in the mezzanine. Contact me for info. Also have your events and film club meetings there. Beer and wine with Ashveille Pizza and local breweries!!! More to come for sure. I can direct you of you wish.
I am so happy with our garden and flower beds. The rain and colder temps have stumped some plants but others are thriving. We have been fed well, especially by French radishes: mmmm. The lake is up by a foot from last year and it is quite perfect !! We spent the past week between the lake and home. Doug's finally feeling rested after 19 hour work days 7 days a week. He is not used to doing that labor intensive work for such long hours away from home so he is happy to be in his space and resting while working on many future projects and finishing the current one. I also have a "Honey Do" list out of control. He will be on the road for a while but I will attempt to join him when possible in between surgeries and taking care of the home from afar. It is a lot, and I love it, but I would love it more if he could be home full time, which we are currently trying to establish.
Next Monday and Tuesday mornings we are going to our neighbors farm to let out all their animals(chickens, turkeys and goats) for their day in their outdoor spaces. We just let them out and feed-water and get a feel for what it is like to raise animals. They have a much larger property devoted to farming than we would. They have the best eggs I have ever had and we are trading for eggs-"gold"!!! So that will be fun. Sunday Dadio is coming over for father's day dinner with Mary. Eggplant Parmesan was his request as I make it baked with no cheese(vegan). It is good !!! Plus a nice mixed veggie-green salad from the garden and fresh baked bread. I may even do some grilled veggies???? or appeteezers.
We may also attempt to visit my Popa Gross who today turned 93? What a strong Prussian. He is amazing. He was so close to death the last year and now he is having a re-awakening. Still bed bound but he is eating a little and the home nurse-pt team is taking good care of he and my grandma. They just have to be home bound and it demands a lot of energy. My aunt lives with them and handles the errands etc. I hope we can visit but they may be too pooped. Douglas' father passed away in the late 80's. He was a fun and gregarious man whom our mom loved very much. The whole family misses Bob at this time. "Here's to you Popa Bob!"
So I just wanted to give an update. August 9th is our annual Butterfly walk in Woodhaven close to the airport. I hope you can join us or donate for the cure for lupus. It is a wonderful program and we are doing great things at UM for lupus patients in the present and paving a brighter future for those to come. We are survivors of the highest order !!!! http://www.lupusadvocacy.org/ and http://www.amsetrlupus.org/. Bring lots of friends it is a great day and you get a pancake breakfast.
Lots of love
Angela
I am so happy with our garden and flower beds. The rain and colder temps have stumped some plants but others are thriving. We have been fed well, especially by French radishes: mmmm. The lake is up by a foot from last year and it is quite perfect !! We spent the past week between the lake and home. Doug's finally feeling rested after 19 hour work days 7 days a week. He is not used to doing that labor intensive work for such long hours away from home so he is happy to be in his space and resting while working on many future projects and finishing the current one. I also have a "Honey Do" list out of control. He will be on the road for a while but I will attempt to join him when possible in between surgeries and taking care of the home from afar. It is a lot, and I love it, but I would love it more if he could be home full time, which we are currently trying to establish.
Next Monday and Tuesday mornings we are going to our neighbors farm to let out all their animals(chickens, turkeys and goats) for their day in their outdoor spaces. We just let them out and feed-water and get a feel for what it is like to raise animals. They have a much larger property devoted to farming than we would. They have the best eggs I have ever had and we are trading for eggs-"gold"!!! So that will be fun. Sunday Dadio is coming over for father's day dinner with Mary. Eggplant Parmesan was his request as I make it baked with no cheese(vegan). It is good !!! Plus a nice mixed veggie-green salad from the garden and fresh baked bread. I may even do some grilled veggies???? or appeteezers.
We may also attempt to visit my Popa Gross who today turned 93? What a strong Prussian. He is amazing. He was so close to death the last year and now he is having a re-awakening. Still bed bound but he is eating a little and the home nurse-pt team is taking good care of he and my grandma. They just have to be home bound and it demands a lot of energy. My aunt lives with them and handles the errands etc. I hope we can visit but they may be too pooped. Douglas' father passed away in the late 80's. He was a fun and gregarious man whom our mom loved very much. The whole family misses Bob at this time. "Here's to you Popa Bob!"
So I just wanted to give an update. August 9th is our annual Butterfly walk in Woodhaven close to the airport. I hope you can join us or donate for the cure for lupus. It is a wonderful program and we are doing great things at UM for lupus patients in the present and paving a brighter future for those to come. We are survivors of the highest order !!!! http://www.lupusadvocacy.org/ and http://www.amsetrlupus.org/. Bring lots of friends it is a great day and you get a pancake breakfast.
Lots of love
Angela
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