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.

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.

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.

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

True love and friendship or maybe just swingers?

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

Living Your Best Life

Living Your Best Life - Fall Issue of Lupus Now Magazine Offers Tips for a Special Life

October 11, 2007

Some 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.

On her fiftieth birthday, Baltimore-based mother of two Karen Evans had a happy home, was active in the community, and had a satisfying career in public health. She was well on the way to earning her doctorate degree. The surprise birthday party her niece, actress Jada Pinkett Smith, threw in Karen’s honor was a celebration of a life well-lived and well-enjoyed – truly the best life.

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.

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.

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

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

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 !!!!

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 !!!

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 !!!!!

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

much ado about nothing

Hearts are hearts in physical and in ethereal forms. My grandparents have both had heart attacks in the past few months. My friend has had lupus related heart issues. I feel too much emotionally.......and our common bond that is "we feel" !!!! What and how we feel is the question.....My grandmother is reading a book on "living with heart failure".....of which heart do we speak? Is there a connection? Do our emotions relate directly to our organ? To what degree do we sense our emotions to the degree at which we can avoid the heart attach? Do we really want to see our emotions to that degree? "I DO" !!!! I have had heart issues with lupus and am on heart meds etc.....I have a systolic murmur and high BP. I am examining this aspect of my life. I saw my lupus Dr. today and he said "You are looking good for being the only patient I have with every complication possible and fulfill every criteria for lupus............" Well....that is great but what does that mean? I guess I am lucky to be alive and feeling "healthy" for whatever that is worth. So tests are ordered, blood drawn, urine given, body fully examined and daily chemo pills(cellcept) starting again tomorrow. I come home and feel lucky to have care yet not quiet sure how lucky I am??? on a heart feeling level. The other side of the fence is that I wish some days were just days without being labeled "sick"...........With that said I am not sick I am healing. I refuse to accept being set aside for statistics. I will focus on that !!! I will find my way though this thick forest of fatigue. My Dr. "Joe" is great because he encourages(even pushes) my gardening knowing that is my workout and meditation and encourages exercise !!!. He also has me paired with a fellow patient friend with whom we work out. He also wants to experience the amazing heirloom varieties which we have been able to grow, and how could you blame him? His mom is or was an avid gardener and it healed her heart.That is the insight healers need to have.



Growing love, tolerance, peace, hope,food and understanding is the whole point. My heart aches for the healing of worldly issues since I was 4 years old. I know I took on a big part of that healing as I thought I was once a conduit for this work. Call it spiritual healing or whatever you want. I do feel others pain. Always have and always will. Now I must separate myself and heal my own pain. That is the quest for the week..........Oh where to start. In the moment perhaps?

Feeling My Oats

"Every generation has the obligation to free men's minds for a look at new worlds....to look out from a higher plateau than the last generation"
Ellison S. Onizuka

I worked in the garden today with Douglas and picked our first cherry tomatoes from the vine and a rare yellow heirloom cuke which is round like a ball. What a great feeling. I also observed the delicate flower of an okra plant which is beyond words. I had no idea. Then sat in wonder of the hibiscus or "moon flower" growing larger every day producing huge blooms of pink and white. I feel how strong the urge for nature is to grow and how it take so little for this process. It is just a miracle. Through all the draughts this past month the grass is dead but flowers and food are in abundance. If anyone wants any zucchini please come pick.

I had a month of shoulder replacement recovery and now can drive !! Freedom at last. Douglas is here this week and my family has been visiting as well as girlfriend Constance. I feel so full and happy. It will be a long job for Douglas in NC but it is good for our bank account and he is loving the design aspects. It will be a fabulous exterior renovation. It look like it will drag on till winter which is not the optimal for us but I might go down in September after friend Sharon visits. If anyone knows of a place where we can stay-rent in downtown Asheville let us know. House sitting included.

On a "Blue Funk" note, as my Grandma Gross says, my Popa Gross had a heart attach yesterday and is in the hospital recovering. My friend here just had a lumpectomy yesterday. There are a few others who I will hold in my thoughts as well.

Thank you Dad Saul for the lovely framed piece and for introducing me to Lola. She is a bright and sweet woman. I can see how you make each other happy. Good to see Uncle Myron too.

During these times of utter chaos in the world it is my hope and dream to see a better place evolve from the ashes of this time. Let the fear and fighting end. Take the word Greed out of the dictionary and let;s make it a rule that everyone must perform one good deed every day. Call your elderly neighbor, offer to take food to someone who is ill, write a hand written card telling someone you love just what they mean to you, volunteer or simply open the door for someone at the grocery store. Smile and be happy to be alive and making a difference. Don't sweat the small stuff....life is too short to waste. Spend it well and it will give back tenfold. I am on a cliche kick.....Love A

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...

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.

Good day ya'll. The A-goil is getting stronger and more of her brain cells back. Legs seem to bother her a bit and the walker is still close by. We finally got out of the house and went over to the mom and pop's. All in all things are good. Got a dusting of snow...

The Angel has risen...

She's been up and all around today. Feeling her oats and moving energy . It's good to see the smiles again and look of optimism...

The sun broke through the clouds this afternoon....

Looking at yesterdays post I have to admit, I was struggling to post something positive. Angela has been in bed quite a bit with a fever. If it's not one thing it's another. Vitals are low. She only took 2 of her daily dose...she's tired of the drugs. It's a gray day. Is mercury in retrograde?

She always brings me back to center...all is good.

...another beautiful day, upper 40's ...

miss A is doing better. Went to Dr. appt. today, Doc is happy with her progress. Eliminated 1 of the 18 meds she takes (the other 14 are supplements). He may add a couple more later though... She still shakes like she had a triple shot cafe' mocha with powdered sugar on top...She received a prescription for a park-for-free tag for the van, she'll still make me park in the regular spaces...

I've been a little frustrated lately, time for me to vent...

• Wheelchairs...the double wide model is now the standard for the hospital. They barely squeeze through the doors. Angela looks like Edith Ann (Lily Tomlin) from Laugh In in them.
  

• Did you know there are about a dozen names for the same medications. I have to carry a pharmaceuticals guide for dummies just to keep up with what she's taking. It's not about the amount of drugs she has to take, it's about all the names I have to remember. A new pill means another 5 hours studying all their brand names, generic names, disclaimers, adverse reactions, Latin and whether or not they interact with Viagra...
  

• The prescription bottles need to have additional labels that read, "Pliers, cork screws and nut crackers are required to open container".
  

• Our Doctor, whom we have the utmost of respect for, is given 15min (honest) for each patient he sees when he is in clinic. I5 minutes. Now that's production... If you take extra time you effect the amount of time he is able to spend with other patients. Here are patients with life threatening diseases who are struggling to get a grasp on their illness and the guy who is doing his best in helping them gain sense of their condition/treatment has 15 minutes per visit to do so... We are quite fortunate; since he is a member of Angela's fan club, Ann Arbor chapter, we have had more quality time than what is allotted.

• I waited in line at the bank today longer than Angela's doctor appointment took.

• I discovered an ugly truth...pharmaceutical companies promote illness, "educate" the doctors and push the drugs... (gggrrrrrr!) ...and people go to jail for smoking pot???
  

Enough.
dOOg out

All is swell. Angela is less dependent on the walker. Her hands shake quite a bit, not sure if that will go away. Vitals are steady. Today we have a nurse and physical therapist coming over to evaluate things. They'll be coming around a few times a week for another month or so. All in all my Angela is regaining her strength, a little shy on memory...she is now 40 ya know...

New Years day...low key. The mom and pops came by with a yummy dinner... Nice entry into the new...

Humor is up...