fun in the shade..........

well it is almost two weeks post op and i am feeling my oats. martha, my sister, william(huuby) and theirs two girls lainey and olivia are here keeping track of chores and garden and me. they experienced ikea store in detroit today and are in sweedish meatball heaven. bought some very cool items including 1950's cocktail glasses for us because our glass supply was running thin. martha and i went to ypsilanti yesterday after driving doug to airport(sad-boohoo) and loved depot town. old antique district. i bought a pair of 50's wool pents in 95 degree temps for $8. yes there is a santa clause still left in the thrift world. we struck heaven. then we ate a fabulous lunch at a place which is famous around here.....called the "Dalat" and is the best vietnemese food for a ridiculously low price. needless to say after fasting and hospital food i porked out big time on curry and asparagus-crab soup and fresh spring rolls(rolled with lettuce and rice paper-steamed). yummy!!! now william is in bloomington for a few days and we girls will be at the lake for a few days; dolphin floaties and all. i can not go in and am tortured by the lake calling me in to swim.......but just sticking my feet in is good too.

oh by the way i won at scrabble with 200 points !!!!! genieous......girls are so lovely and all is great !!!!

doogie....the garden is being loved so no worries..............xxoo missin you so much.

mending.......

hi,
i am home and feeling good. i know the surgery went very well and i am on the mend quickly indeed. i am doing light exercises(rolling wrists, squeezing hand and elbow bending) no moving shoulder yet. the staples come out tomorrow !!! all 11. it looks great. small scar for such a large shoulder. my sister Martha(hota) and her husband William with their two daughters(our god-daughters) are coming tomorrow and Doug goes to asheville tuesday. William goes to away for a conference too. so it is a girls getaway. lake and garden taking priority and many outdoor festivals at night when it;s cool and art fair at end of month will entertain us. hard to type so i am done. much love to all. prayers to sally !!!!!and dale !!!!!
A

hOMe

Angela has been home since Saturday late. Finally got the pain thing worked out. She's not much into the narcotics (ssssh-constipation). She’s still hooked up to a catheter in her neck and a pump by which she receives a numbing agent similar to what they used in surgery; one that numbs the shoulder not the mind or spirit. She carries the unit around in a fanny pack. She'll be hooked up for a week. It won't stop her; she's already been out to the garden.

Took her in today for x rays and check up by the surgeon. Incision looks great, swelling is down. The areas where they tried to get an I.V. into her other arm (x4) looks the worst. Girl ain't got no veins. They take her BP on her calf now.

I have to say...the pain thing. Wow. She has my respect; all of it. While she was going through the worst of it, out of the blue she looked at me and said..."Those poor guys in Iraq, loosing their arms and legs, how they suffer...I'm so lucky".

I hear her email box is full. She’ll get back to everyone soon, probably via blog.

Recent events

Douglas here:
Angela went through surgery yesterday. Doc is very happy with condition of bone. When they opened her up several fragments of bone fell out. They did not have to replace the whole head. The damaged area was removed from the center and the knob was resurfaced to accommodate a metal cap. It was attached via a pin (shorter than expected) driven into the center of the bone. Doc said otherwise bone was in great shape. She'll get another 10 years out of her shoulder.
Pain level was extraordinarily high, typical of shoulder replacement. She had a catheter ran into her neck into the should area into a bundle of nerves. That was enough in of itself. It did the trick.
Last night was a different story. Pain took over, heart rate went crazy, had everyone on edge considering her heart issues. Finally got everything under control this a.m.
May be able to go home tomorrow with nursing care in house.
She is groggy, still smiling and asking everyone who comes into the room what their name is and how they are doing...

Just gave her a suppository...gotta run...

more later. thanks for checking in.

Pre-Surgery Stuff

Well tonight is the night before I receive a brand spanking new shoulder with all the sparkle of titanium. I hope to sport a fashion conscious shoulder holder and after three weeks be ripping up weeds,lovingly of course, and frying up the turkey bacon and fiishing my long awaited book !!!. All my labs look the best in a year !!! Chemo seems to be working. The other issues are just side effects and long term effects of chronic illness so that will work out. I am in a good mood and spirits high. I raided the library and blockbuster or entertainment and if course Doogie will be the highlight of my entertainment as always. Deb's Matzo soup is much anticipated !!! Mike(dad) does pretty good job of entertainment without realixing it too. Snoring for the nurses is always a hit, with the paper flipping with each breathe on his face or chest. "The man can sleep through a volcano". Nina, Mary, friends etc are all helpful.....Kitty has been great and Renee's hands and Lisa's energy has healed while Grandma Gross offers maternal love and care. All family extended is amazing. Your emails and cards have lifted me to new heights.

So with this I send you all my love and blessings for a fabulous week or so and shall be slowly be in touch. Check the blog and do write. Until we meet agaian...............

Love
A

Three Days Countdown to Surgery

Hi !!!

Happy sunny day here in Michigan. My sweet husband is home for a @ 3 weeks and I am really looking forward to this long stay. It has been challenging for us both with him on the road. It seems there is so much to do when he is home that we hardly take time to enjoy the summer together. This time we did and had a fabulous weekend. Now he is at the hospital doing his volunteer work with the children's ward as they decorate their new IV stands on which Doug put fun wheels that light up when they roll , and he will be working on the computer and in office all week while I prepare for the shoulder surgery. He loves the yard and garden !!!



The right shoulder replacement is a resurfacing technique and plug which will replace the dead bone. It will not last forever and is being placed knowing that there will be an eventual(elder years) total replacement once we preserve the healthy bone, clean it up and hopefully regrow healthy new bone, which happens daily for humans and is constantly building and wearing away as long as there is blood flow, proper calcium absorption and the Oesteoblast-clast proccess is happening as it should. That is why it is important to get right amounts of Vit. D, Cal and Mag on a daily basis along with bone strengthening exercise. Walking and light weight training is the best !!! I am nervous and yet anxious to get it over and get on with an active late summer-fall. So say your prayers and hold good thoughts as always that the surgery will be safe and easy with short recovery time. Then I focus on the knees !!! Did you know Cartilage supposedly stops growing at age 15? Glucosumine and Chondroiton may help repair cartilage but does not grow new.



A few people I want to mention.... My cousin Sally for her courageous battle with cancer. She has survived three or four episodes and now is in a precarious place so please send her your thoughts as well.



I also want to say I had a great visit with my eldest brother, who is actually my uncle by blood and is a long story. Nothing weird just unusual. He stayed with me for five days and will be back in England where he lives with his family. I was blessed to have the time with him for the first time in our lives. I got to know him on a deeper level and it was very important to us both. One never knows when the end is near and regrets of not connecting to loved ones plague the soul. I can honestly say I really have spent much of the past two years getting to know family and friends on a more intimate level. That is one gift lupus has given me. I am able to take the time to smell the roses, contemplate, meditate, ponder and spend time with loved ones. It is a gift we should each allow ourselves to enjoy before it is too late. Do the things you have on your list as if it were your last year. Do not wait for retirement or the lottery !!!



Garden is overflowing again this year. Someone come pick greens before they die out !!! Just pull up to garden and pick. Lake is still up and clean for swimming and I will be taking advantage of it this week with 90's today and Tuesday....



Make it a great day !!! Angela

Lovely Michigan Summer Day

I do realize it is officially still spring until June 21st yet it is summer up here. I spent the weekend at the lake with my folks enjoying the shade spot on the porch with my reading materials, journal, computer and lots of great food and wine of course. It was wonderful to go for pontoon rides and swim in the cool waters. My body loves being in the water where there is no weight bearing on joints or bones. It is wolmb-like and effortless on a floatie. Yes I had on a hat, sunglasses, sunscreen shirt and lots of sunscreen. The pooches swam with me and protected me from the turtle I earlier observed......EEEK. Snap !!

Our garden is bursting. Everything is blooming or passing old buds. The peonies were stunning this year. I have had a continuous bouquet and sharing flowers and food with whomever is willing. I had hopes of getting a small stall at the farmers market with an umbrella and table but not enough energy to pull that off and my muscle man is on project. Next year though !!! We have several farmers markets on Wed, fri., and Saturday and one trunk sale. It's called Trunkapalooza. Like a tailgate flea market.

Students are gone for the summer, all 50,000 of them so it is quiet and road construction takes over the unused roads for summer fix ups. I do not get in the car unless I have to.

Health wise I still am dealing with pain in high numbers, irregular BP, weakness, shakiness and fatigue-malaise yet trying to stay rested and strengthen muscles at same time. I have enjoyed thoroughly my new friend (privacy rights-no name). She is an MD and researcher, partially retired. I love her energy and spunk. She has lupus and has been through the ringer more so than I and yet she is of great support. I have learned much and we continue to find common interests. Especially horses !!! and I have someone to workout with at the wellness center who can direct me in the proper way to exercise with my issues. Her specialty was Orthopedic Surgery. I find her so interesting as a person I may end up writing my memoir with hers as well..."the story of two miracles" or "two stories of survival and hope"? Have not mentioned it to her yet only made inferences and she seems she may be open to it. Her humor and interesting take on life is fascinating and funny. I had been calling out in my meditations and prayers for this type of relationship and friendship. I am blessed.

My grandma is getting stronger after heart attach. I spoke to my uncle Myron and he also has much the same joint-bone pain and I send him healing thoughts as I do my cousin Sally. Hold them in yours if you will.

The Asheville project seems to be coming along and I am so proud of my sweet and handsome husband. He is really growing in so many ways and his design and artistic mind is working on our own web projects as well with the help of other partners and talented minds. We want to share it with you when the time is right. Hospital projects will be in full swing this winter after the NC job is complete. Doug git a grant for a sculptural piece to sit in the main waiting room near the entrance to the hospital. It is interactive as well and really neat collaboration. We also have two other hospital oriented projects in the holding pattern for now and lupusadvocacy. Our annual walk for Friends of Amster Fund "Butterfly Walk" is coming up August 19th, Saturday 8 am, with a pancake ans sausage breakfast and a talk from Dr. McCune about the advances in research for causes and cures, and of course, better treatments. Fun for the family, lots of shaded areas to rest all in a park setting outside Detroit. I have sent everyone I know information. If you have not received info in a week let me know.

I sure missed my trip to NC but it is good I stayed. I would not have had energy to socialize and it may have made things worse. Staying home and resting is the only way to heal for now.

Blessings,
Angela

Balancing Act

Well what can I say....? Some days are good and others, well, are not quite as great. The last few days I have been feeling punky and painful. I guess this old body deserves a respite. So I shall concede and rest. It seems I itch too much for most medicinal pain control ( bone and joint pain, toes, arthralgia) When one endures a certain steady level of pain over a period of time the body's sensory receptors are over sensitized and can cause a phenomena similar to deferred pain. At the same time Fibromyalgia can set in the muscles due to tension etc. This in return can cause blood pressure to rise, anxiety, stress, sleeplessness, lack of appetite and string of run off issues which is normal for a body in need of some relief. I experienced this lately and will be staying home and resting as directed by Dr.'s and my own common sense. "Ask, believe and receive". I cancelled a very important trip knowing it would disappoint others and cause concern for Douglas......but one does what one needs to do.

I realized I have been very analytical and sensible for the past year with what exactly I am dealing in relation to the bones and the long term affects of lupus and medications, especially steroids. The future reality is surgeries up the yin yang and lots of PT. The steroids are the devils maker with angels wings. I have been flying on the wings of denial for the future which could lie ahead and placing my head and heart in hope and wishful thinking of sorts. I know one thing for sure is that one must first accept and love themselves right where they are before a healing can occur. I have been fighting the acceptance and not liking my body or the drugs that kept it alive for their betrayals. Why does this body reject itself? Why is it the only drugs that help cause even more damage? Who the hell knows. All I know is I am coming to terms with a devastating and yet miraculous situation which forces me to care and love these old bones and the frame which holds it all together even more than before. I am becoming gentle with myself in ways that may seem indulgent or selfish. I am OK with that. I am becoming OK with not being a super woman. I have learned, reluctantly kicking and screaming, to ask for help when needed and to accept when "no" might be the answer. Perhaps I was afraid to ask because in the way in the past I was disappointed, abandoned and forced to learn how to rely on and take care of myself from a very very young age. Not since I met Douglas have I been completely able to accept the tender care which he so graciously gives. I have a supportive family and friends who are just waiting for me to ask. And so now with Douglas working on a project I am forced to ask for help once again from family and friends, fellow patients and even neighbors. Hard for a caregiver as myself. I have also been inspired by many other woman who share this disease, some worse off and some better, yet they all offer seeds of wisdom.


I tell you all this because the martyr syndrome will harm you. All negative emotions manifest in physical form. I am not saying disease is always self inflicted, but I am saying that the chances of having a whole and healthy life depends greatly on the perspective of healthy mind and spirit of the individual. This responsibility is huge. I accept it and embrace it with open arms as this is my greatest lesson. Lupus has taught this to me in the wildest of ways........what a ride !!! I have been meditating, visualizing, replacing drugs with natural therapies, yoga, praying, exercising, positive thinking, eating great and doing all the good things one can do for over 20 years now but missed this one link....."asking !!! receiving !!!" and so I leave you with this insight for all of us on a path of self discovery, enlightenment and human growth......Do not be afraid to give and receive equally. Be gentle with yourself and others. Always love first. Eliminate judgment and anger. Face fear and let it go. Look in the mirror every day and say "I love you just as you are". Feel blessed for every breath and always share your kindness unconditionally. Let everyone you love know it daily. Accept, feel and know all is well and perspective is everything. Most important of all....Forgive yourself if you feel your body has betrayed you. Forgiveness leads to love and leads to healing, seen and unseen. Here lies miracles. This is divine !!!!
"To forgive is divine"

On a good note.....our garden is feeding the masses and full of vibrant life, we have had rain for days, the water level is back up and summer is in full swing in the great north. Oh....and we are alive !!!
Lovingly
Angela

What a week !!!

Is it possible to say "Happy Memorial Day?" Especially now with so many dead soldiers to be memorialize? It is sad. I can only say "Blessings" to those who suffered and may their souls be set free and may one day in the future we forget war and fighting and learn to get along and communicate before killing. I guess this holiday is all about celebrating their lives and so we shall.

My grandmother, who shared in the "raising of Angela", has had a heart attach between Monday morning through Tuesday am and finally went to the hospital 6 am. She was not sure it was an attach because she has had such a hard time with Diabetes, spine issues related to osteoarthritis and high bP and never had any heart issues or high cholesterol etc.. A WARNING FOR WOMEN if you feel an ache in your chest, heratburn, pain in head, ears, jaw area or arms please go to a Dr. Plaque can form in a day but is the momentary breaking or tearing away of the plaque during a stressful moment which causes the problems and blockages and sometime ruptures. Us woman tend to be the caretakers and we try so hard to make sure everyone Else's needs are met before out own. We also hold a lot in our hearts. The heart symbolizes all the happy, sad, emotional feelings which we remeber in the cells of that tender muscle we call the heart. Poets have used the organ in ways to describe love, heart-brake sadness, loss etc...I learned a very important lesson yet again from my dearest, beautiful, smart, clever, sweet grandma Vera. I have idolized her my entire life. I emulated her love of arts, gardening, wilderness, birds, walking in the woods, reading, humor, cooking, silliness and child likeness. Her long legs and startling blue eyes and that smile !!! She is always laughing and has a long term memory like an elephant. She has a rhyme, song or ditty for every occasion. Yesterday in her hospital unit I saw someone I did not know. It scared the hell out of me and brought back some very difficult memories of my mom and my other grandma. They have a certain look when sick. You know the look. It made me realize how fragile we each can be and how precious each breath and moment is to celebrate that life inside us all. She is still in recovery and I am waiting by the phone to find out more details. My poor Popa can barely grasp what is happening, much less walk a few steps, and his grief and fear is evident. His fragility is frightening and I waite for that call any day. How sad to leave the love of your life. He turns 90 this fall and all he lives for is her. I feel for them both !! yet we are all going to be there one day.

My father and I spent the day togther and tackling the issues and future possibilies with a certain sense of "Now What?. I found comfort in the strength of my dad who is always there for me when I am sick, and now he is there for his mom. I can only imagine how painful this is to him (first my mom, then me and now his mom). I laugh too when I think of two seperate occasions in the hospital when I was a patient dad at my side...My father and I love to read the Sunday New York Times together. He usually falls asleep half way through the paper with hands folded loosely at his chest and snoring like a bull. Nurses in and out, bells and whistles going off and yet he snores. That is how I feel now. Like curling up with my freshly delivered NYT and loving husband while falling alseep if only for a moment to dream a good dream and dreamily listen to the cacophany of birds, rain and wildlife in our garden of eaden.

I am schedule still for shoulder replacement June 28th and all the other ongoing medical appointments and treatments. All is well and our garden-yard are flowering, blooming and sprouting. We ate our first salad from the garden and have planted butt loads of food. We are blessed. !!!!! My sweet husband is home and you know I love that so much !!!! Woo woo woo !!

Make every day a great day !!!! Every moment extraordinary. Tell someone you love them or forgive them while you have the chance. Make life special. Angela

Done with Cytoxan !!!!!

Monday was the last of six monthly infusions, which is bitter sweet. I thought I would be in a celebratory mood and feel instantly healed and free......but that was not to be the case. In fact I felt almost depressed which is odd. I think when one ends a chapter in their lives, whether painful or joyous, it is an ending which deserves the same grieving process as all endings do. This was a stronger dose and my body felt more tired and toxic than normal so perhaps I was just in a "blue funk" as my Grandma Vera says.......God bless her !!! She always finds a way to cheer me up. I also remember every other mother's day week is like this (blue funk). I miss my mom and my Grandma Donna and I always longed myself to feel what it is like to be a mom and have un-cooked french toast and juice brought to my bedroom door Mother's Day morning, by giggly kids wearing flour covered kisses. At age 40 I still feel like a kid who will never know what it feels like to be a mother. I live vicariously through those around me who do have kids(nieces, nephews, god daughters etc...). It makes me happy to know that every year moms all over the nation are acknowledged and remembered for all they do to inspire, nurture, feed, love and befriend !!!!! Every woman is a mom !!!

Make yourself a great Mother's Day! No matter who you are you have a mother somewhere. Let them know how special they are by a call, flowers, card or a silent prayer.

My cousin Sally came through brain surgery and is healing....Keep on sending her good vibes !!!

Thank you Kitty for helping out and Dale for getting me in the pool !!!! Nina for flowers and Renee for the plants and friendship........It makes it so much sweeter, this life, with friends who care.

Angela

World Lupus Day May 10...Walkathons near you

Hi !!!!
May 10th is World Lupus Day where patients, Dr.'s, Researchers and supporters come together to educate, raise awareness and funds and pull together the lupus community in one common cause: A Cure!!! Please check out my web site's links page for several lupus organizations holding walks near you. The Butterfly Walk in Greater Detroit raises money for the research in which I am involved at the University of Michigan. My physician, Dr. J. McCune, and his department is compiling data and performing research on better treatments and possible causes and cures. They are funded by the Amster Lupus Fund and the Friends of Amster Lupus Fund, which I am on the walk committee for greater Detroit on August 19th called "The Butterfly Walk". Email me if you are interested in walking or wheel chairing with us or in making a tax deductible donation which 100% goes to research.
www.lupusadvocacy.org for more information. or www.lupus.org for what is going on globally.

Making it a great sunny day !!!! Plants are sprouting up all over. My starters are almost ready to hit the moist soil and feed us and all our neighbors for the season and beyond. Any tips on canning???? Send me pictures of your gardens.........

I would also like to ask that you hold my cousin Sally in your heart and prayers.

Love and Blessings,
Angela

April 24....Good day to be alive on planet earth

Hi !!!
Health is good but I learned to not let my Fentenyl pain patch prescription run out. I realized just how well it keeps the pain at bay so I can live a fuller life. Especially after Yoga on Friday I was a mess. but the my sweet husband came home after a ten day work trip and rubbed it all away. How happy I am when he comes home from projects. He and Dad are at the lake getting the cottage open and the boat in the water. The water is up maybe a foot or more which is great news. So this weekend we will be at the lake and here planting more seedlings. Last chemo two weeks and counting.

"The Annual Butterfly Walk" for the greater Detroit area is raising funds for Lupus research at University of Michigan Hospital. I am on the planning committee. The event will be Saturday August 19th. If you want to walk with us or donate please let me know and I will send you the form. Even $5.00 helps !!!! angela@lupusadvocacy.org. Wheelchairs and golf carts available. We need water bottles to be donated if you would like to help in that way?

Happy belated Earth Day !!! I have celebrated with my sweet Douglas and our gardens love us for it. Seedling are almost ready to be planted in the rich soil and the birds are flying by the dozens, ducks back to nest and more new ones coming in. I saw a doe the other day and our Chipmunk. The cat population is at five. They are so cute and wild. I feel like St Francis here feeding the animals and planting more plants. The Arbor Day Foundation is still accepting new members for $10 you will receive 10 trees to plant or donate. Go to their web site and help the earth and grow the value of your property for Arbor Day, 27th of April.

Five Things You can Do Now For The Earth...
1) Recycle, Re-use and Renovate. Even buy from consignment shops and take your old clothes there to sell as well. Almost anything can be recycled into a new life form or donated for a cause.
2) Compost all vegetable scraps, egg shells, news paper(no colored ink) and even shredded paper and coffee grounds. Learn more on various web sites for gardening and at your library, any book by Bob Flowerdew or Mel Bartholomew will guide you on the path of composting.
3) Plant more bird, butterfly and bat loving plants and trees(perennials) and set about small bird feeders and bird baths, along with bird houses, bat houses and even butterfly homes. They eat bugs to decrease the use of pesticides(hopefully you would never use them anyway) and
they help the plants grow and provide a natural habitat in which everyone will benefit.
4) Use only compact fluorescent light bulbs..Saves money and energy. Use Smart Strips power plugs or unplug unused appliances especially at night....TV, stereo, micro etc can be unplugged while at work and sleep. Get free energy kit from Duke Power http://www.dukepower.com/. They also offer free energy audits(ask your power company to do this).
5) Use cotton bags for your grocery shopping and to hold vegetables. Never use grocery bags unless you can recycle for other uses. Cotton bags can be purchased at http://www.createjoynow.com/, Oprah.com, http://www.earthbags.com/ and any health food store....They even make ones just for six bottle of wine......Now that is enough to make you want to go shopping !!!!! Oh and try to buy organic and support local farmers and purveyors. Cuts back on fuel use and supports local economy.
Even the large discount chains carry inexpensive organic options even in cleaning supplies which is very important.

http://www.shaklee.com/
http://www.greendimes.com/
http://www.americanforrest.org/
http://www.earth911.com/
http://www.globalwarming.com/
http://www.gaiam.com/
http://www.oprah.com/
www.discoverychannel.com/planetearth

On A Sad Note: I wanted to write something last week for all those who were involved in the horrible event at Va. Tech. The memories are etched in my mind and heart, yet the faces of grace are what stands out.I remember and respect the survivors and the family of victims who so bravely handled the situation and will go on spreading the message of healing to others, just like the Father and Brother of the girl, Rachel, who died at Columbine. They now teach at schools across the country on how to avoid these things in the first place and help those in need find and seek help before their mental illness or hatred gets them to that terrible point of not return. I hold in my heart these bright young kids and the brave teachers who sacrificed their lives. I hope the rest of the country, world and the media can take the good and the graceful to focus their energy on the positive, preventative and on forgiveness. Then we can start to heal the nation of this growing hopelessness and helplessness our youth face every day and see it mirrored on TV, in music and on Internet(monitor the i-pods, Internet & TV for your sake and your kids). I also hope one day very soon we bring our young men and woman home from war so they can go on with productive lives and give peace a chance. At least stop the blood baths.......My heart still breaks.........and yet I see hope.

By the way Hang Gliding season is here..........It is truly tempting because I only have about 8 more tandem lessons and I can fly myself ???? Tandem of course. ( I know I have bone fractures and bone loss..and I might be a tad crazy but I must live) I will not have to do any lifting or landing. One of the instructors is an emergency surgeon at U of M....They have ways for us "with special needs" to do it safely and is safer than driving or even walking down a flight of stairs. Plus I remember why I love to be alive on planet earth!!!! when I am flying on a current and looking down at the land below......the rich hews of color and bright blue skies. Wow !!! What a good day to be alive and how blessed we are.
We shall see.........Maybe I will just swim and do light yoga for now? I hope my Dr. isn't looking.

Make yourself and others a wonderful day !!!!!!
Love
Angela

What I learned these past 8 months

April 12

I am feeling so blessed to be alive now. The wonders of being alive and having a joy filled heart is what keeps us going. We need this in a world of war, disease, indifference, poverty, calamity, ignorance, intolerance, greed, hunger and all the perils we face in our lives on planet earth. Our perspective and attitude, thoughts, feelings, words and actions create an energy around us as we walk this earth which attracts what we perceive as good or bad. I believe that I feel blessed and joy-filled deep within myself because I know true compassion and love. I have a husband-partner whom I deeply respect and adore mutually, a loving family, beautiful friends and a wonderful extended family. In this moment this is what my healing journey with lupus is all about !!! What a gift. That does not discount the moments of grief or despair but the inner feeling of peace always remains. Even during chemo or during surgery..........how can I feel otherwise. The glass being half full is a good perspective. Pass this inner joy along to everyone you meet today. Smile at the check-out clerk, the homeless lady, the doorman, the bank teller, the stranger passing on the street.........even let someone with whom you are having difficulties know that you see their inner beauty and this bump in relationship shall pass. Let's be friends and neighbors today. It really feels good. Spend time with someone you love and say kind words. The moment is now. Be a mentor. Or simply remind yourself just how lucky or blessed you are !!! These seeds grow and spread..........A

one more down..........4/10/07

Hi,
I had my 5th chemo infusion yesterday which means one more to go for this six month round. Maybe more ahead but let's hope this did the trick. Takes time but I feel better and stronger and will envision this to grow. All is well in snowy spring. Actually the snow is melting and the sun creeping in as Douglas drove away in a limo for the airport this morning, lending a view of all the cold early spring blooms wilting in the dew. Bittersweet departure. We do not like being apart for more than a few days but the way his schedule is working out he will fly home often enough to keep up with our home and gardens and still do a knock out job on this project. It is a great job with nice folks and part of his old "crew-mates" back together.

I have mini medical school classes on Wednesday eve and Yoga on Fridays and swim in between. Two books on the table which I hope to finish this century and lots of books I want to read now that I have my grey matter back, although that is debatable. Don't ask!!!!! but let me say you can put you butter dish upright or upside down and both are equally functional.......Love and Peace A

April 4

Hi !! It is me Angela......
Spring appeared for a few days this past two weeks and yesterday it was 70 degrees and now it is freezing, windy and snowing. What a difference a day makes. We did manage to get our beds cleared and added new mulch to protect the new growth from frost. In Mich. we can frost till end of April and even snow storms. So we are starting seedlings in basement grow light this year....and we are planting quite a crop this year. Lots of heirloom seeds, organic don't panic !!!! Love this time of year anticipating the newness of spring, flowers in bloom, food growing in the garden, herbs smelling fresh and cooking time in the Madaras House. We might even sell some fruits of labor at the Farmers Market in Dexter and chelsea. Spring fever is real !!!!

Health wise all is getting better and the bones are the same maybe a bit worse. I will have right shoulder replaced June 28 and knees and left shoulder thereafter. This first round of 6 months chemo infusions will be done second week of May !!!!! Then we may have to do another later. I still do daily chemo orally. All the natural and lifestyle treatments and therapies help very much. Swimming and light yoga so far seem to work and will have a pain patch Friday to help me get through this PT so I am strong enough for surgery. I am writing a lot and reading. I start a mini medical school class tonight at U of M medical school on the Muskuloskeletal stystem. Very excited. Have met two strong woman who have survived lupus and we get along great. Nice to have someone with whom I can really connect at that level only we can.

Douglas is going to be working on a project in Asheville for the spring and summer so he will go back and forth. I plan to come down at the end of the job and will let you know the plans. He will have his lap top if you wish to email while there.

That is the latest and greatest news. We are blessed and we love our life !!!! and I miss you all so very much. A

Another chemo, another day...
Angela is doing great! No adverse reactions...
Her pop went with her this time...

Interesting story...for some time A's doc has told her about a surgeon who has lupus; who has pretty much the same issues as Angela but much more advanced. Long story short Angela has been trying to locate this person for some time. Angela ended up getting her treatment next to this woman on Monday. They clicked. Come to find out she lives near us as well. Angela is very excited about the new relationship. It seems to be one of those that you just know is meant to be. It's significant because Angela's efforts to write her book seems to be gaining more support. More sources becoming available daily.

Midst all the weirdness that goes along with our lupus adventure we are really feeling blessed.

I just got back from Asheville. Her fan club misses her dearly...

Hi all!
Thanks for the comments referencing the updates. I appreciate folks checking in. I think keeping this blog going is more for me than anyone else...it's therapeutic.

My Angel is doing well. Howard, her uncle/brother stayed with us for a couple of days; it's always nice having loved ones around....more therapy.

Next Monday (12th) is chemo #4. I'm not going to be here for this round, going out of town to check on a job. I'm grateful for the work opportunity but I just don't like being away from my child bride. Her pop will be with her...

The snow has been beautiful...

All be good. Angela got a pain block in her shoulder. It's a RF (radio frequency) they inject into the joint. Wild concept. She's sleeping better and has much less pain. It's supposed to work for a couple of months, enough time for her to get through a couple more chemo's.
She's happy about it. I'm doing what I can to prevent her from doing cartwheels.

She's feisty...keeping me entertained.

Post chemo...all is well.
We assume the leg pain was due to large dose of sodium given prior to infusion. The salt makes her retain water thus swelling puts pressure on the necrotic areas of the bone. Okay; makes sense...her bones are like barometers.

oy...the complexities of being an Angel on oyth...