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...

Had chemo yesterday. Came home feeling fine, woke up with severe bone pain again, now down through her ankles. Don't understand why, no steroids...keeping an eye on her.

Doc says to definitely schedule shoulder surgery for may/april...

Angela is well...
Monday is infusion #3. It's now becoming routine...

After looking into shoulder replacement she may delay the operation until next fall. The recovery time for a normal (I'm glad we don't fit in that category) replacement is about 4 months. It's hard to say whether or not they will run into any snags as they did with her hips. It may be better to enjoy the summer (gardening). She'll end up getting a few pain blocks to help her get through till the surgery. Here's a link that gives some insight into the process.

Today is a good day, cold, a couple inches of snow on the ground, pretty. Happiness prevails.

As for the image:
The ancient embrace photo is of a young Italian neolithic 5000-6000bc couple. It's a rare find, males and females were never buried together. Ancient lovers...still caressing one another's faces...

"I'm no longer on lock-down"... Angela says.
She is now off home care and is able to get out into the real world, in between chemo treatments. She's been going stir-crazy. For kicks we went grocery shopping and took our recycling to the drop off station...
Ahh, the simple pleasures in life...

...um...85% .

Yesterday we went to Doc appt. Angela's tests have all come back with positive results. The chemo seems to be kicking some Lupus butt. Doctor Joe is impressed by her recovery, me too. She's scheduled for 4 more infusions. We're getting her scheduled for shoulder replacement after she's done with the treatments, June. Until then, no bowling.

Her walker is getting cobwebs, we've reduced the amount of drugs and her mental state is back 90%. She's back in the kitchen (whew!) and monitors her laundry.

Insert sigh of relief here________.

Yesterday was GREAT!
I haven't seen Angela with so much energy and vitality for some time. This round of chemo, without steroids, seems to have made a huge difference. Lupus type symptoms seem to be decreasing. Yahoo!

Went to a pharmacologist (ref by both of Angela's primary doctors), one who is actually anti-drug. She analyzed all the meds, vitamins and came up with a plan to minimize Angela's intake. She's eliminated some of the bad boys and increased supplements etc to balance everything out. She teaches at the U of M and is a consultant for some big pharma. She did it for free. Amazing. (insider info: take fish oils...they are life savers)

Angela's bones are a different story. I'm afraid if she sneezes too hard she'll loose a body part, as soon as the chemo is finished we're taking her in for retreads. In the mean time, as long as I keep the duck tape nearby, she should be fine...

All is well. I apologize if ya'll been wonderin' what's goin' on. Our phone/elect service has been out...

Angela had her second infusion on Monday. She's doing fine. Feels better than the last one, she says. We're home, she's smiling. Left leg is acting up, she feels/looks swollen, vitals good. While in the infusion room, funny thing...after Angela was finished with the infusion, the nurse dropped the chemo IV that was removed from Angela's arm. I went to pick it up for her, the nurse panicked and exclaimed, "don't touch that!" ....It was too toxic to touch without gloves...

Great timing. We had a ice storm Monday morning which cut our power off until approx 1.5 hr ago. We've been camping in front of the fire place. Had plenty of wood and food. Transistor radio/NPR pacified us. My campfire cooking entertained us. It's about 14 degrees out now, glad the power came back on. Ready for a shower. Flushing toilets...great concept.

More later...

Ok, ok, it's been a few days...

No news is good news.

All the blood work has come back; looking good, so chemo-infusion #2 is on for Monday a.m. This time they changed the protocol...no steroids...novel idea. They've lowered the dosage of cytoxin down a bit too...

Angela is up in spirits, up and about and the vasculitis is clearing up from her toes and fingers. Good sign...

I'll be in touch after the chemo...I think everything has leveled off for now.