My future is bright I have to wear shades....in the garden

I am enjoying the sun filled skies more so than ever as I seem to be less affected by it. There were times in my life when driving in a car during the summer for an hour would cause a horrible rash, fever, nausea, head ache, arthritis, swelling, pain and lupus flare. I am now more tolerant and do protect myself with new fabrics that blocks sun and better sunblocks. This truly offers more freedom during the summer months.

I remember a trip to Costa Rica when all my friends at the beach hut were spending days in the water and on the beach. I was covered up under the banana trees and thick bush with 45 proof sunblock, tunics or caftans and umbrellas. I was so jealous because I wanted to be out sea kayaking during the day and walking, riding horses on the beach etc. I was able to do all these things before 8 am and after 8 pm. So that was my schedule. It worked and I was blessed. I kayaked with the dolphins and sat in the beach 100 feet from the whales. I watched the howler monkeys jump through the trees and wildlife do it's thing: scorpions, bats, snakes, birds, bugs, turtles, frogs and all sorts of other creatures. This was my second time and shortest visit, all of two weeks. The first time I was mostly in the rain forest by the beach or in the jungle. Some time I spent in San Jose which is wonderful if you can find your way and know where to go. My boyfriend at the time was partially raised there and his father and step brother and sister lived there with his step mom running family businesses. It was a great experience. I was not a tourist but a "Tica". The second time a tourist. Both equally wonderful. I have a dear friend who fell in love with CR and moved there years ago to create a retreat/bed and breakfast/inn. She has done well. She also is very involved in helping endangered animals, spaying and neutering dogs and cats and helping stop youth prostitution mostly among teenage girls with rich businessmen from US and Europe. She is one of my "heroes".

Today the farmers market was hopping. People in a flurry to buy plants NOW. Next two weeks we will see less plants more fresh food, and then the food will come in by the truck loads. I did buy a few plants to add to garden and also fresh locally raised free range lamb. Every year it gets more full and crazy. Local coffee roaster was there "Rooster Roast"...fabulous. Also the tamale Gal "Pillar". Zingermans with their fabulous cheeses which I can not eat......and the bakers.
So all in all it was a good morning. I got home and the guys were here cutting the grass and trimming and I planted and watered a bit in dry areas. Then proceeded to clean up five more piles of raccoon poop under my bedroom window. STINKY. Fake snakes, cayenne pepper, light sensors, me yelling, Lysol, orange cleaner, Tabasco and everything else I have read to attempt at keeping them away with yet no luck. I am at wits end.

My Dad's dad is coming home from a month at the hospital after my step mom's beautiful mother died. He (Popa) is ready to go but he keeps hanging in there. I have tried calling Hospice to see what they can do. My poor grandma can not handle him nor can my aunt who lives with them. Dad does most of the paper work and technical stuff. He is trying to get a hospital bed and a good chair for Popa's room which is very small where all he will be easy to navigate. It makes me wonder why the human body or spirit keeps leaning towards life when life is so difficult at age 90 something. His dad and brother were the same way. I have strong fighter German(Prussian) stock on that side with enough Polish,French, Canadian, English and a tad Cherokee to balance it all out. Add Doug's Hungarian and you have some mix. what mutts of immigrants we all are.

Enjoy your summer days of planting and reaping the bounty.

For Memorial Day

I want to acknowledge those who lost their lives, loves or limbs in the armed service. I do not like war at all yet I know there are those who have to protect our rights and our people. The Hitlers of the world do need to be stopped. I understand this intellectually. In my heart I have faith we one day will find peace in living with one another in balance and respect. That is what I desire. For now and in the past I do truly respect and have admiration for those who put themselves in the front line. I also deeply feel for those who had no choice and were sent into combat and never came home, or came home very messed up. Would I be willing to do this? Wow. I do not know. Who knows what one will be able to do when the call is taken. I admire anyone who puts their personal interests second to those of humanity.

For all those who lost their lives and who served !!!! I take my hat off to you all. Thank You !!!
For Peace to be !!!!!!!

Pondering a good Dr.

I often wonder if I would have been a good Dr. if I had been able to follow my plan and attend medical school. Lupus and a turn of events made it almost impossible for me to place myself under so much stress and sheer torture. I was not strong enough both physically and emotionally at the time I was in pre-med. 1988 was the year I decided after having made straight A's in biology, anatomy and physiology. Math is another issue. Science has always interested me yet it was not a focus for most girls when I was growing up and Modern Dance was my focus in high school which left me ill prepared for some of the higher science-math classes. Interesting enough I am very good with math now in the area of calculations and budgets. I am good with money. Yet calculators were always at hand when we were growing up and it is a shame. Now we use computers for everything and have forgotten how to spell and write. The point is I had a drive and a passion for understanding the human body and healing disease. No wonder with a mother who died at age 27. She was so young and full of life and I being 8 years of age did not understand fully why? I knew good Dr.'s and researchers would find a cure one day for cancer, auto immune disorders and other diseases. We have come a short way in many regards. I think the technology is there but let's be realistic....The medical-pharmaceutical industry, while helping people, is also a money making machine. Then add insurance lobbyists and we may never know a truly preventative health care system which finds cures and makes less money doing it. That being said Dr.'s, nurses and researchers are the ones who do the work and help the patients heal. They find the tools, causes, cures and they care for the patients and their families as if they are a part of the family, in many cases. They do not do it for money or ego. Some do, don't think I am naive. I have been blessed to have great Dr.'s, nurses and researchers with whom I work on my healing journey. I could honor the whole bunch, and I will at some point in my book, but now I want to pay homage to Dr. McCune who you know to be my lupus Dr.

After his professorship installation on Wednesday I pondered what the speakers said about their colleague and the great joy we each took in his success and his humility. I was reminded why he is an amazing clinician and researcher who started out as a history major. Then I recalled what one man said about the "style" for which McCune has been famous, and I am not talking about not his signature bow tie. His patient care style is of what I speak. He tells stories and weaves in history lessons, little bits of random knowledge few would know and ties it all up in a lesson about the disease itself and the issue at hand. I leave my appointments writing down notes of things I want to look up in the dictionary or encyclopedia (google). I learn more in those 15 minutes sometimes than an hour of reading the Economist. I say this because it is a style which he created or naturally is just who he is. It says a tremendous about him as a person. He talks of his family and makes correlations to his life and other people whom have touched or inspired him in some way. He connects the dots in a weird fashion. In the end I might forget to ask questions or tell him certain things going on with my body but I can always follow up with an email. He, in a sly way, distracts the patient from focusing on the negative aspects of the disease while passing along nuggets of knowledge. Then a hesitant hug, he never used to be a hugger, I feel cared for as opposed to being a number in a chart. (he now has become a good hugger).

It is his dedication to making patients lives better which makes him a great Dr. aside from all the titles, faculty status, degrees, smarts, awards etc.; he is just a simple man with simple needs and a passion for what he does. In the end will he be known for great discoveries or excellent patient care? Or will he be known for being an eccentric, knowledgeable, humble, compassionate, humorous (if you are smart enough to get it) man and a good father, loving and admiring husband, devoted son and inspirational and supportive world renowned specialist and mentor. I know him as Joe. My good Dr. and friend who has been there for me and my husband at all hours of the day and night even when he is on vacation or eating Thanksgiving dinner. I have always had the security of knowing he was a call, beeper or email away. That is rare indeed. I also admire the way he inspires me to be a fighter and a good person. He encourages exercise, being out in the garden, living life and taking quality over quantity, while striving for quality along the way. "So cheers To You Joe !!!". Now I know I would have made a good Dr. because I would have had he and so many healers as role models and that is a blessing of which I do not take lightly. For now I will settle for healing myself. "Healer heal thyself".

A good man is Hard to Find...or the other way around?

Just kidding. My man is a hard working one at that. He is now working around the clock with short naps and even working through the night. His crew is devoted and hanging in there with it all. They are great. The client's "team" (architects) keep making changes and adding work which adds time and money to our budget. It always seems to happen at the end of a project, then the clients wonder why it went over budget and over time. It may be mid June at this point. I am beside myself. I know my sleep deprived husband will come home and sleep in comfort in our own bed and will be at the lake chillin for at least two weeks end of June. I am holding down the fort and trying very hard to keep my honey do list to a minimum so he can indeed have a vacation. I feel guilty when I know how hard he works. I used to be able to go with him and handle all the paperwork and office stuff but now I feel I am useless. I do handle some things but it is almost impossible to help while here. I miss being involved in the creative process too. I will one day get back to my job. He will make his mark here in Ann Arbor one day with out having to travel 622 miles away for work. We are blessed to have work.

I met my friend-accountant today and her family. We went to Zingermans for breakfast and then I did the farmers market and downtown home and garden shop. I will be planting more Monday. I can not help it when a plant calls "Buy me" I have to do it. She has survived cancer and looks fabulous ! She just finished treatments and is now glowing. I love her attitude and her family is amazing. We are planning to have a canning day when the tomatoes are ready to can and freeze. Salsa, pasta sauce, stewed, green beans, peppers, pickles, pestos etc. It helps to do it with a team in an assembly line. I can use the outside gas burner so we are not burning up inside. I also want to get a dehydrator when I can afford to spend the money. My friend has one and said it is wonderful. Maybe I will have to borrow hers for a week? My hope is to have a stand in front of the house where I sell plants and food. Maybe my neighbors would want to sell her eggs too? She may have a produce stand as well though? So I have the spring bug big time and I watch the plants grow daily. Some seeds did not come in? I think the frosts had something to do with that. I could not cover the entire garden. So I have seeds leftover and can plant Monday.

I was going to go to the lake but now I am pooped out and the old bones-joints tell me I did enough for one day. Enjoy your weekend.

Only one year ago.......asheville 2008

Now what?

Wednesday there was an inauguration for the first Klein Professorship for Rheumatic Diseases given to Dr. Joseph McCune, My lupus Dr., mentor and teacher. He so deserved this honor. Now we can have his focus even more so on lupus research, patient care etc. It was touching in so many ways. He has come full circle from a long haired hippie with a history degree to a to a Professor and the Director of the Lupus Program at the University of Michigan Hospital who has been infamous for wearing a bow tie and slightly balding hair daily. Quite a transformation. His International recognition and respect for his work in the area of Lupus Research and clinical care has lead to this event. I attended with my father who remembered Joe when my mom was a young patient and he was a young resident. I remember him when I first saw him in 1986 as one of his first patients in this clinic called FDU. This led to the Department of Rheumatology Clinic and now within this clinic we have an official Lupus Program and a clinic devoted to our patients needs. We will find a cause, cure and better treatments. I am still so excited about this. There is a certain hope derived from this type of "event". The Klein Family are an amazing group led by Marcia and Michael Klein after her diagnoses. They have been donating to research at the U for years and now went far beyond the call of "duty". They are an inspiration to so many. Now e get back to work and focus !!! It is a good year. The Butterfly Walk is August. Do not forget. www.amsterlupus.org.

All is good as the rain fills the garden with "liquid love" so the seeds can sprout and grow strong. You can feel and even hear the plants grow along with the freshly cut grass. It is truly beautiful out there in our yard. The large old oaks have a certain majestic strength and elegance. I weeded a bit, spread grass seed, mulched one patch, cleaned raccoon poop by the bucket loads off the roof under my bedroom window. Stinky !!!!! Why do they do this? Filled the bird feeder which is being eaten by the pounds due to birdies needing more food for their babies. Nests are everywhere. Then showered the poison oak I pulled off my Lady Slippers.

I attempted to transition into swimming with out having a therapist guiding me. My right hip replacement is weaker and knees are more painful and swollen. We are concerned with the hip and knees. Bones, joints, tendons and ligaments are waking up and I have to remind myself I need to be patient. I was in bed for two months and on high doses of antibiotics which have left me weak and my gut in a mess. The bones are fighting for more blood flow and the right hip needs to replaced soon but I can not do it until fall. So we continue to do PT and find my core strength once again like I always tend to do somehow. Summer is the best time to get strong. Having surgery now would be so difficult for me to recover and on Douglas who would want to be here. He is working so hard. So I canceled my trip to Asheville for Doug's project's grand opening and visit with family. I have to stay focused for the next year or so until all the bone-joints with issues are healed or replaced and I am working at high energy and strong immunity and blood counts. Then there is the immune system being challenged. Air Planes are not good for me right now. It is difficult at times to be a middle aged woman in my "Prime" with a musckuloskeletal system of an aged woman and an outside appearance of a 27 year old. Yes I do still get carded. I want people to understand that unseen diseases can be very challenging to those of us who are still young and full of life and goals, like every other healthy human in their prime. I feel young at times and then I wake up in the middle of the night with bone-joint aches/pains and can not seem to understand why I feel so ancient. I then think of others who are in much worse shape and feel ashamed. I then realize I have it much better. The challenges I have are minor compared to many. I feel blessed to wake up each day. I also have loved, lived and done so much in life. Then I feel grateful and happy to be simply working in the garden or taking a walk around the yard.

Feeling the pain of more activity and pt

Yes I am now experiencing the pain of being back on my feet and in activity in life and in pool PT 3 times per week plus daily exercises. I am moving slow due to necrotic bones, failing right hip replacement (in need of replacement) and need to keep the inflammation low. I feel good other than severe seasonal allergies, low blood counts still and pain at night I can not control due to inability or willingness to take toxic pain meds. I have a bad reaction to everything now. This happened after the recalled "bad-leaking pain patches". I have tried natural, pharmaceutical and mind-spiritual practice yet at night sometimes the pain comes back in bones, muscles and joints and is not something I have been able to control at times. It had been good up until lately due to my lack of activity for almost 3 months. I spent two months in "bed" and hospital with high dose antibiotics after surgery and now I am doing more activity with Douglas being gone and PT kicking it up a notch, which is now starting to hurt and swell them old bones. When I try to bed over in the garden it is like an 85 year old with severe arthritis. Then the mechanical pops, cracks and other sensations makes it difficult to do too much in fear of doing more damage. I am determined to live a quality life no matter what; yet I AM conscious of making the good choices and how my decisions affect others who care for me. So I am taking it one day at a time. Each day very different. My white count is low too which adds to the low bio. I have to draw more blood Thursday. So that is my reality at the moment. feeling good but have faith in feeling better. None the less I live my life for which I am grateful.

Tomorrow is an important day for the UM Lupus Program and Dr. Joseph McCune. We are having a university inauguration to honor him and give he and his team an opportunity to focus whole heartedly on finding a cure, better treatments and patient care. I am blessed to be a part of this. My mom was one of the first lupus patients at UM hospital. She knew briefly McCune when he was a resident. My family is in debt to him for his care over the years. I am a volunteer for this program as an advocate and fund raiser to show support for future generations. My Father will be my date and it will be a very emotional event considering my dad spent many years with my mom as she was an ongoing patient. She spent a year plus as a full time patient with weekend passes. What I remember is the long hall leading to her room and the view of the Huron River and city scape. I also remember the cafeteria made her special bread. I also remember Weber's Inn when the family visited and we swam indoors and had a moment of fun in the middle of hell. So a mile stone is made tomorrow and very appropriate we will be there. They have written a brief bio of my journey with lupus for their brochure. I am humbled once again.

My friend brought by some plants for the porch she wants to keep here till August and they are lovely. I feel very happy !!!! I hope you are all reading this and knowing how blessed you are. Feel it and give thanks. Life is precious. You are precious. All is well. So be it !!!!

Being the best you can be???

My neighbor Ina, who is 85 years old this week, gave me a book when I was sick. It is by a minister named Joel Olsteen. It is a daily morning read with inspirational quotes from the bible and then his interpretation for modern day life. I must admit I have seen him on TV and have been turned off by his over zealous exuberance and big white smile. I think I have an aversion tomost TV preacher men just because of all the ones we know who got caught with their pants down, hands in the coffer or worse. My prejudgment is wrong and so I have been reading the book with an open mind. I find myself reading several days at once and really feeling inspired by what he is actually saying. The teachings of Christ, Buddha and others who followed the way of true love and compassion are everlasting. They speak to the heart and soul which is difficult to do when we are living such high tech busy lives. I find myself struck by the simple lessons of simply setting out to be the best person one can be every day. With that one simple goal we can do so much good for ourselves as individuals and for our world. He also speaks a lot about letting the past go and focusing every day on creating a better life for ourselves. He uses addiction, greed, illness, lack of creativity, lack of concern for others, poor self esteem, victim mentality etc. as lessons on how to possibly change those habitual thoughts and behaviors we tend to get caught up in for a better reality. Much like quantum physics, metaphysics and meditation practice. I think of the patterns in my own life I would like to change and yet I never seem to follow through 100 %. Maybe 80%. I wonder why it is so hard to make the best choices for ourselves? If we knew we truly do create our own perceptions and reality then we would make those right decisions no matter the circumstances. The habits and addictions would go away. The judgment, greed, jealousy, anger, fear, grief, pain, illness and all of it would simply be a memory of the past. Or would it? As a human I know we can only aspire to be great. I try and sometimes actually do it. I also fall sometimes. I hear those old voices and follow old habits. I tend to live in reaction at times. I know all about meditating, prayer and positive attitude. I follow the golden rule and the precepts and commandments as best as I can, yet I fall short. Is it human nature to fall backwards while taking two steps forward? of course or :hell yes!". How can we assume we are perfect when we are all simply humans doing the best we can. Filling our heads with positive thoughts and focusing on good things and a reality we want for ourselves, our families and our communities is the best we can do. Filling the Karmic coffers is my goal. If I can appreciate a flower for a moment and breath in it's miraculous beauty I feel I have accomplished something great. If I can put a smile on someone's face I feel magnificent. If I can have that cup of ginger tea instead of coffee I feel strong. If I decide to take a walk around the yard in the evening instead of watching TV I feel healthy and smart. If I make the right food-beverage choices I feel in control of my behavior. All these little accomplishments add up one day. It may not heal lupus but it makes the path much easier to walk. Which is the point. We get in our own way and make it difficult for ourselves because we learned bad habits. With a little compassion for ourselves, self love, sisterly love, good intentions and some self discipline we can live fuller-healthier lives which give back to society instead of taking. We see through new lenses a world which is beautiful and worth preserving for generations to come.

So I decided it is indeed the little things that count and one day all add up. I remember hearing a story of a post man who lived in the city back in the day and had a modest life. He was black in a time when blacks were fighting for their civil rights. He had a good job, family and a home. He would place his pennies and change in a jar every day and then at the end of the month place it into a savings account. By the time he retired he was a millionaire. It did not change his life and he donated much of it, put his kids through college and lived a happy-simple life. He was proud and humble at once. I have so much respect for this type of person who works hard, spends time with family, devotes time to help others, shows great restraint, has self control and thinks about a life he wants to see for himself and for future generations even when the odds are against him. I think of all the people who I respect and these qualities shine through. Discipline especially. That is the main thing. If you have discipline it leads to self control which leads to good decisions and behaviors which leads to a good life well spent and well deserved. The bumps along the path are no longer a focus. The path stretches far beyond the eyes perception. Only our spirit can see that far ahead. The temptations will try to fool us and trap us but I know we all have it in us to walk this path. My dad has always told me: " Do one good thing every day for someone else, then two, then three and keep on going until you have made more deposits into the karmic bank than withdrawals". Good advice and nice work if you can get it, and you can get it if you try.

Happy mothers day to all of you who have lived a life for your children and for their children and for all generations to come. Mothers walk this path because they have a huge responsibility. I am in awe.

"Paddlin"

Paddling at the lake in 2008. Casey and Mary came for a fall visit at the lake and snuck a shot of me kayaking. I kayaked last weekend which was the first of the season. The sun was not so hot and there was a fresh breeze which felt wonderful. We had a great time. The water is so high !!!! I can go all around the Island now and it is clear and clean.
Dadio made pizza on the Egg grill and we had a bon fire. The new couch and cushions on the metal porch furniture looks fabulous. It is very cozy.

The garden is growing with little sprouts popping up all over the place. Flowers are in bloom and I keep finding little surprises I forgot I planted last year. The tomatoes will be ready for the ground in a week or so. Today is cool and windy so I am inside resting up after a big day in physical therapy yesterday. I did water therapy for about an hour and some land exercises for 15 minutes or so. Then I did some yard-garden work and shopping for the weekend. It was a busy day for this little gal. I was feeling it too. I spent those two months(Feb-April) in bed and in the hospital, or here at home, so no wonder it will take a while to recondition. The older hip is shaky at best so as soon as I feel it can not go on any longer I will "get er done". They have me scheduled for September for another replacement in the right hip. If it makes it till then it will be great. I will try to hold off till November if possible. I feel stronger every day !!!! aside from a few blips my health is great.

Michigan is such a beautiful place to live with all the water and green. The huge oaks and majestic maples which line the streets intermixed with pink magnolias and dog woods. I know every state feels they are lovely, but I am seriously in love with where we live. Every day is another nature experience and I actually found the two ladies slippers and white trilliums I transplanted from our woods. They are lovely and mixed in with the may apples. Spectacular.

I also want to share something about my grandfather Lawson Saul (who I also call Dad) as most of you know, is doing great after surgery. He is recovering and feeling his oats from what I hear. I am grateful that he made it through his surgery and is healthy. On a sad note my other Popa Gross, Dad's dad, is in the hospital after a year or so of being very ill and old. He is being moved to a rehab facility and then we will try to find him a place more permanent as he is fading fast and my grandmother can not take care of him anymore. She has been burning the candle at both ends this past year and has her own health issues at 86. I wish I could be more present but there is nothing to be done. I also know of several other parents of friends and family who are aged and going through this transition of end stages of life. I know what it is like to face your destiny and death and it is not fun. It is inevitable that we all die and a matter of life yet it is one topic we do not discuss openly due to it's inevitability and the morbidness of it. I prefer to have it all out on the table for discussion. It is important we come to terms with out life and our after life. This gives those left behind a sense of peace which lasts forever in their hearts. "Comfort".

Mothers day is tomorrow and I have many mothers alive and passed. I always laugh when I think of how many I have. Grandmothers, mother in law, big sister, three step moms, a few maternal friends and my sweet mom Pam who passed away in 1975. I send cards to those who are still with us and make phone calls and even manage to get flowers or little gifts some years, but more than that I try to remind them all how special they are and how important their role in mothering was-is to me. So for all of you out there who had a mothering hand in my up jerking I thank and praise you. Good to remember all the moms in the world for the most important job ever. I wish I had that experience at times but it is not meant to be. I do have two step sons, with whom I wish I had more contact. They know they are loved and always welcome in our world.