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.

Good News All Around

My grandfather is doing very well after his surgery and is now home with home nursing. He is feisty which is a good sign. My friend Mary W. made it home late last night and we had a fabulous visit. It was too short but great. We did get everything planted and tomato, pepper seedlings are under the grow light almost ready to go in the ground mid May. I still have flower and squash seeds plus ginger root to plant. I love planting my own ginger and anyone can do it. It takes a while for it to grow but it lasts a long time and can be moved indoors of in a container. The flowers after a year or two are lovely but I have never let them grow that long. I use too much in my tea. I am watching our huge ground hog who lives in the barn eat the dandelions. two ducks who live in our wetlands backyard are waddling across the yard.

I had good news from my kidney Dr., Dr. Rao. All is doing great and I do not need to see him until September. I just need to get iron and blood levels back up to normal and will do now with all the fresh greens and meat at the farmers market. I took a break from the heavy iron tabs. I am almost there. These kidneys keep surprising us. They are functioning perfectly. I love my Dr. too. He is from India, Madras actually. He is so sweet and asks all the right questions. Very smart indeed. And to find one who specializes in lupus is rare. He is a good hugger too.

I also met with the surgeon today and my new hip is doing great. I am off the restrictions and can now swim. It will be 6 months before it is completely healed but it is doing great now and I just need to take care of it and let it strengthen. The right one has not progressed or deteriorated. I will be able to hold off on replacement until September (fingers crossed) unless it starts to hurt more or make more noises. Doug's schedule does not allow me to do it sooner unless it is necessary. I will not lift heavy weights and will stay off it as much as possible while still swimming, paddling and gardening. I love summer !!!!! And lupus is calm and I am feeling better. Just tired from all the appointments, allergies, gardening and blood draws. We are running tests we do not generally run which are important and could be preventative in measure or could cure some underlying issues or side effects of all the medications and treatments.

I thought about positive attitude today more so than normal. It may not cure a person or stop "seemingly bad things" from happening to us but it can free us from being victims or falling into a "poor me" slump. The attitude and faith or a belief in a higher purpose is always helpful no matter what you believe. I know all is well even when it seems bad. I have to believe in that. It is the reaction which we can control not the circumstances.

So make yourself a good day with positive thoughts and be grateful for what you do have. It will make you appreciate it that much more.

garden half planted

My good friend Mary Worrell from Asheville ( her husband Casey or "Chuck" and Douglas are doing the project together in NC) is here and we are having a great time. Yesterday we planted seeds and she dug up an area for potatoes and onions. I have been slowly adding activity to my list. It felt great being in the garden. I think tomorrow morning we will have it planted in full except the tomatoes, peppers and summer squash. I can do those first week of May. If anyone wants to come help in the garden you will reap the benefits. Please call first though. I can always use help around the yard !!!!

Dad came over on his new motorcycle he got for a song. The economy works well for those who can take advantage of it. It is an Italian road bike called Aprillia. It is beautiful !!! He had to show me how to use my new power chair and all the technical stuff. I took it for a spin around the drive, yard and to the garden. It has a basket for carrying tools and food. I think I will get great use out of it, especially when I can afford to get a lift or ramp for the van. It is wonderful to know I can get out and do things even on the days when walking is dificult.

Today we went to the farmers market and a home-garden general store. We ate at my favorite Korean dive "Kosmos". I am happy. Then we went to the egg ladies house but she was not there. Her eggs are the best. Now after a nap, Mary and I are resting with books, magazines and computers. It is storming outside so no outside work until tomorrow morning. After we get my list of chores completed in garden-yard we will take a break to go to lake or do something fun.

Have a wonderful weekend. For those of you who know my grandfather whom I call Dad a lot, Lawson, he just had a successful surgery repairing an aortic aneurysm. He was cut from sternum to groin. He is very sore but feeling good and will be resting up in hospital then rehab for two-three weeks. Major surgery. I am so happy he went through it well.

There is grass under those wet dead leaves

The guys came yesterday to my surprise and spent 3 hours blowing leaves off the grass into the woods and cut the grass. First of the season. It was great to see how green it is. The birds are living it too with new worms and hopefully grubs for them to eat. Not that I want grubs because they grow into beetles and they attract moles and voles, but I do want the birds to eat them. Our grass and gardens die when the moles eat there way under ground. There are nematodes for eating grubs but very expensive !!! Nature always wins.

With Douglas coming home everything seems brighter. It is almost 60 degrees and sunny and will be up to 70 tomorrow and Saturday. Perfect for gardening and walking outside. Yes I am being careful and not over doing it. I know I have to stay off the legs but I also need to exercise and get fresh air and sunshine. The dankness of winter has lifted in the sunshine and so does my spirit. It is a time of renewal and health. The trees we planted last year are sprouting buds !!! Which is exciting. I just wish I could remember what we planted. I know there is one almond, one dwarf apple and one dwarf pear. I just can not remember what is in the front yard? I think it is a maple. I also have a few banked which may survive. Birch and willow. Have not checked the strawberries yet.

All is fabulous !!!! feeling stronger every day.

Douglas is coming home Thursday

I am sooo looking forward to Doug's short visit. I have missed my man. He is ready for a well deserved break. We (what's this we stuff?) plan to till the garden, plant tomato seeds in pots for starting seedling, mulch around the house and snuggle. I know you all had a spring break or are having one. I hope it is a good one for sure. I spent Easter with Mary Mandeville, Nina and dad and Mary came by for a short visit to pull a piece of plastic that was dragging under my van. It was a protective cover for the under carriage and I drove to the hospital last week hearing something so strange I thought it was my tires or breaks. Then I realized what it was. When I got home Doug informed me he also had a vehicle issue............he had to get a new transmission for his truck. Always something. Oh well it is like new and mine is fixed for now.

I have been off IV antibiotics for 9 days!! Last Sunday was my last infusion and I really feel it leaving my body. I feel like I am on detox. I think my stomach is coming back to normal and I now have a sore throat and cold, which has been trying to get me. I feel more normal. I even cleaned house a little and still working on more; spring cleaning stuff and re-organizing. I am amazed at how many clothes and shoes I have that do not fit. Maybe never did? a friend said I should get a pair of those panties with a fake butt or padding. That would be something. I will stick to baggy sweats for now. I have been doing more leg strengthening isometrics and I can see progress, but still no buns. I just wish I could do more. Patience.............what is that?

My neighbor brought me a book which consists of daily affirmations to push oneself a little harder, strive for more in life, fulfill dreams, expect more of ones self, trust "all is perfect" and we have a choice. The choice is how we start out the day and end it with all the details in between. It is perfect and yet we can strive for better. It is self improvement to continue growing in life. The challenges make us stronger and they are gifts. In the midst of these challenges I find it hard to stay positive if I focus on the challenges themselves instead of the solutions, while at the same time, letting go. Some say "Let go, Let God", others say "God willing" while others say "If it is meant to be it will be" or "It just Is". These phrases are all saying the same thing. I believe we do not control anything but our reactions to challenges and events. I will strive to stick to that path of letting go...........I turn it over to a higher power and trust in good faith that all is perfect just as it is and tell myself I am grateful for all of life's experiences; The good the bad and the pretty. It is something to strive for yet not always easy.

Our neighbors are starting a community share agriculture business on their small family farm. They have been building a hot house, cold frames and other fun stuff. I bought some eggs from them and they are great !!! If you live in A2 let me know when you need eggs. They are fabulous and $3 a dozen for free range-organic. We both have the idea to put a produce stand out in front of our land which gets a lot of traffic, runners and cyclists. It is a good way to get rid of extra produce and make a little money to pay for seed, mulch, organic fertilizer etc. Next year maybe we will participate with them in the CSA. What a great way to support local family garden-farms while making a little money. Douglas better get home and get those rabbits fattened up! I can taste the casulet now !!! It feels good to know we have some local garden neighbor friends with whom to trade and support. "Barn Raisings" are the new house painting parties yall. I will continue to trade food for other services with family and friends. You eat you pick!!

Mary is back to Chicago for a few weeks. It has been very quiet with the rain pouring down. I slept in and spent most of the day book keeping while visualizing the money flowing...For everyone !!!
Love and Peace !!!

A new day

Today our ducks came back for the spring. We have a pair of Mallards who come to our pond every soring before the summer dries it up. They nest on the woods and swim-eat in water. Then they fly off somewhere? That is my signal that spring is here and we may get a frost or light snow but I feel that old man winter has started his nap. Also, there was a mink in our backyard two days ago on the night of the full moon. It was black, long, lean and skinny with a long tail. My friend was here and she said she has seen them up north but not around lower Michigan. I wonder if it was someone's pet? We have a new breed of squirrel too. Doug and I thought we had baby squirrels but it turns out they are actually a mini squirrel and have migrated here too??? I can not say it is global warming but something strange is happening. They eat wood and are not good to keep around. I took up the bird feeders because it seems that was attracting the whole clan of unusual rodents.
One of them is in the attic but that is probably a mouse. So now I have my ducks in a row!!

Mary is leaving Monday for her loft in Chicago and to continue her job quest and trying to sell her loft. I am able to be on my own now and feel stronger every day. I still need to rest and sleep in late and go to bed early with my 3-5 pm daily "nap" or rest/TV time, but getting around great. I will need some help with things like trash, recycling, cleaning and anything requiring lifting or carrying, but other than that I am independent. Mary has been great and I so appreciate all she has done to help. Her assistance and company was a god send and I feel we all need our friends during these times even if we feel we can do everything alone. I am an independent and stubborn person but grateful for her ability to hang in there with me through my moods and down spell. "Thanks Auntie Mary!" I will always be there for you when you need.

more later..........................

I am now off the daptomycin and PICC is out

Yesterday my home nurse came for the last time this go around to take out PICC and draw blood. Usually we take blood through the PICC but we took the PICC out and realized it had a long blood clot at the end. Good thing it is out, but we tried for 30 minutes to find a vein that would hold up. Found tiny one in right hand and got a few drops. I do not know how they will draw blood now? I am hoping we get this figured out somehow. So in two weeks we can take an aspiration on the right hip to see if there is infection or metal or plastic fragments floating around where the parts have worn out. Then we will decide how to proceed. They may or may not let me swim. Still very cautious. That's all for today. The sun is shining.

Pitty party over

I am sorry for spewing my angst all over the blog for you to read as this is how I journal. I guess we all have bad days no matter how hard we fight it. One thing I have learned is :"This too shall pass". I know when in the midst of a bad day it seems surreal and very important, but it isn't really. It is the great days we will hold close to our heart and remember. I can not imagine what it is like being in a war or a country which under constant upheaval. In that sense I am ashamed of being such a whiny brat....so let's move on. Negativity wears me out. it's a new day !!!

I also understand what it is called "Reactionary Depression". It occurs during but usually after a life altering event or a period of challenges like health scares, death of loved one, a big move, divorce, loss of job etc. Pretty much where the entire country is right now. It is usually a short depression which can be handled by talking to someone objective, writing, helping others and reading inspirational tales of those who have had it much worse and survived joyfully. I have had it after every major health crisis and it seems to be the time period when I realize a long span of time has passed when I had to focus on healing and dealing with insurance, money, loss of social interaction, loss of work or school, being in bed, in the hospital or just feeling very weak with no room to feel emotional. Then I awaken one day and there is a gray tint to everything my rose colored glasses usually seek out. I do not seem to get a good laugh together or feel motivated. Small challenges seem huge. This is a dark night of the soul but the sun also rises. It is that time needed to absorb the events and gather energy for the next phase. Life has it's cycles and they live within us and nature. I know when I get through this spring I will begin to feel myself happy and upbeat once again. I also miss Douglas so much. He is my rock and my soft spot. My best friend and great love. Two months fly by and yet they drag just the same. I am grateful for the health care and generosity of friends and family. I am blessed to have a wonderful space in which to heal and I still feel positive but I have to allow some sadness to creep into my heart or I would be super human or not human at all. I will take average humanoid any day. Well...part bionic.
So I will make myself a great day and keep focused on the things which bring joy and fill the heart and mind with positivity and gratitude.

stressed and snowed out..

Today was a very interesting day filled with many challenges on all fronts. To start we lost power over a frosty snow filled night. Luckily it was brief but did start up generators in the local neighborhood with lights on the mini mansions filling the sky like Christmas. Our garage light mysteriously came on inside too, which was a first. I was alone so had to go down and to check out what was happening and turn off the light. Then a tree fell somewhere? Limbs were falling all over and the raccoons were loudly resting below my bedroom window in a restless manor. The winds must have scared them. I heard another animal I can not explain??? The night did not include a lot of sleep needless to say, but it was very pretty. The whiteness of the snow overshadowed by an almost full moon illuminated the sky and reflected off the trees and electric lines like neon icicles. So glad I did not have flower beds cleared. After 6.5 inches fell in a very short period of time I waited for the driveway clearing trucks in he a.m. One appeared for a moment making one straight line from road to the side of Doug's workshop? If you have been to our house you will understand this is only a small portion of the drive. My van sat immersed in 6 inches plus of snow in the front drive. So I called the company who clears the drive and explained. They were perplexed as well. I explained I was unable to shovel the walkways and asked if they would do this when they come back, if they come back. They said they would call the driver. Then a couple hours later a new driver showed up who is not a plower, but a landscaper. He explained he would shovel but could not plow and did not know where the drive way was, which I could understand due to banks of snow. Also, Doug took all the markers off the drive thinking we would not get another big snow in April. Lesson #1 in Michigan: Snow can happen till May. So he shoveled out an area in front of the garage so I could pull my van inside and wait out the melt. We agreed to not plow with out being able to see the drive as not to plow grass. Then a few hours later I hear a plower scraping the driveway again and this time guessing where were the front drive curves around a circle of grass. Well don't have to cut that grass anymore. Now the drive is a pile of water, mud and mounds of snow filled mud,gravel and grass. So I will ask for a refund on this round. I then had to take the trash out to the "curb" which was interesting. "I am woman I am strong". I hope my PT is not reading this............

While this unfolded; my home nurse came on schedule but could not draw needed labs due to lack of lab orders from hospital. Well, the ID clinic happens to be closed on Mondays and the order we had was old and did not include the tests they wanted. How many times has this happened in the past two months? She left frustrated and I was already in a state. Not Michigan either. I called my Dr.'s cell and she answered right away. Problem solved and I will be off antibiotics from now on. You see I was also having diarrhea, weakness, fatigue and other issues related to the antibiotics. I have not felt very well last few days after infusions and today it caught up. Glad to be off but concerned about lack of communication between clinic, hospital and home nursing. I will do my part to help fix it . I believe it has much to do with the cut in funding and the insurance practice which allows Dr.'s only 15 minutes per patient and nurses have twice the amount of work in half the time. Do the insurance companies know that Dr.'s and nurses work overtime without pay in order to care for their patients? Some fall threw the cracks? I hope they figure it out soon. Lack of communication and clarity does need to be cleared up. I am an advocate as well as a patient. I believe we can each help. Tell your insurance companies and care givers your needs and desires clearly. Keep records and stay on top of your care or have an advocate.

I am dealing with some other issues of personal matter and need not go into the details. Some family members, whom I love, are challenged and some ill and aged. This takes a piece of my heart. I wish them all well.

The good news is that the sun has peeked through the snow filled sky for a moment and it feels warm and cozy inside as I rest on a hot pad. Phone batteries both dead so I guess I am supposed to be quiet. May you have a quiet evening as I do.

Time on my hands

For the past two plus months, and then some, I have had way too much time on my hands. I have spent two trips in the hospital, had home nursing, watched TV, listened to music, meditated, read magazines, books and catalogs. I have tried to knit, unsuccessfully. I have talked on the phone regularly to certain peeps and have spent much time staring out the window blankly while letting my brain run wild or simply empty. I have slept, not slept, tossed and turned, given myself daily IV's and spent way too much time with medical professionals and in hospital. I have pondered, prayed, projected, postulated and procrastinated. I've written, diddled, emailed, sent cards, read cards, Googled, blogged and Skyped. (Are we still in America? Words we never knew are now a part of Wikopedea's vocabulary). I have eaten and drank....perhaps even too much at times, yet I seem to find balance with it all when I take a moment to face the mirror. I know my weaknesses even better than most because I have lots of time to analyze them and correct them, if I am lucky. Faults, I have a few, yet they do not seem to be as bad as those poor fools on reality TV. Is that real? Really? In the end the Razors Edge is just what it sounds like: a thin and possibly sharp line between two worlds or two mental perceptions of reality. There are fine lines between everything in the human psyche, as I have discovered during this self imposed "sabbatical". I highly recommended taking personal time for an extended period. You will be bored and perhaps lonely at times but you will find things out about yourself that you never knew...whether you like it or not. If you don't judge yourself you can change, grow and actually love what you see in the mirror: the way the creator made you. That is what I find so wonderful about being a human spirit.

Winter not gone yet

I see people with spring fever after a few warm days out raking, mulching, wedding and clearing way for the sprouts to reach towards the sun. I had the urge myself after buying all our garden seeds, but something in my heart knows we are not done yet. Chickens are on hold this spring. Today I feel the winter chill and it will snow Sunday. I hope the fresh buds on our baby trees stay warm and toasty. I myself can not yet tend to yard care or gardening so I guess I am lucky because that impulse is so strong. After a long winter as we have had this year, with first snow in November lasting until a few weeks ago, one gets excited when spring appears. So for all of you Yanks...be cautious and let those leaves hang out a little longer to protect the tender new growth.

Today has been sleepy. Rainy-windy and cold make me want a fire in the fire place and nap or a good movie or a good read. I am reading an translation of War and Peace. Translated from Tolstoy's original edition. I did not realize he wrote a few. He had different endings and even some of the characters changed. During the time it was first written there was much turmoil and political unrest. This also has much to do with Napoleon and the bloody war between Russia and France. Yet many Russian nobles spoke French it was not considered "appropriate" among the commoners. Tolstoy was not as sensitive to this as he wanted to portray the truth as he saw it in a fictional text. He used French terms and language and even names(characters) in the first edition and later fell under extreme pressure to take out anything French which may cause political unrest. I am enjoying the read so far and am not too bored. I already am aware that the Russian writers from earlier times had difficult beginnings for those of us who do not grasp the Russian language and their need to explain the family tree and all relations-connections to the main characters. All the names sound the same anyway due to the surname use and maiden name added, I think that is how they did it. ??? If you know help me understand?

I was discharged from home PT today. Sally is my home PT and is wonderful. I have had her here at home for last three years. The one I see as an outpatient is Claudia and she is also fabulous. Both very different in style but equally great. I like to stay with the same care givers and trainers who understand the complications my body presents. Just like yesterday afternoon the infectious disease nurse(that does not sound right) called to let me know my white count was low and I needed to come in first thing this morning for the second blood draw of the week. I saw the labs and they have changed so much from just Monday. I feel like a fluid body of water rapidly changing with the tides bringing in whatever is washed out to sea. I feel like I need constant monitoring. Yesterday after the infusion I was so weak and tired I slept till 6:45. I got up only because dad called saying he was bringing over home made Mole'. It was fabulous !!! I love Mexican food and have been eating chili all week that I made Tuesday !!! So good and lots of avocados too. I need the fat said one of my favorite nurses. I have gained weight this past go around with being so inactive. I weighed more than I have ever weighed but just lost 5 lbs so now I am still 5 pounds over my normal-comfortable weight. Oh shut up all of you who are swearing at me. We all have our comfort zone and I have to stay thin to save my bones.. so there.

All is well and I am more concerned for many who I know who are dealing with their own health issues. There are too many examples and stories to tell of the sick, those in need of procedures and those who have recently passed or are preparing to die, but I will leave it at that. I do not fear or stay away from the topic of illness and death but I am sensitive to those who may feel it too morbid. "Hey it is a part of life".

Douglas is in hyper work mode for sure along with the entire team of people working overtime to get the job done and to bring it in under budget and under time frame. When I say under I do not mean less than I mean not above and over. Understandably all clients want it done fast and inexpensive. This client is very good to everyone and easy to work with so that is a bonus. Douglas seems to have gotten in his groove after two weeks with some stress but mostly happy with it. Dad and I talk about going down for a visit later but the Dr.'s will not let me leave. The lock down will continue for some time. I also know he is too busy to entertain even me. Although I am sure he would try. For those of you who want to visit with Doug understand he is working 7 days a week from 5/6 a.m. till late in the evening sometimes midnight. Do not be offended if he says he can not meet up. When on a project like this he is on the clients dime and clock and he wants to hurry up and get home !!! Plus another project immediately following will take a couple-few weeks so he is focused. I sure miss him !!! On that note good day to you all !!!

From The Dhammapada

"Victory is mine,

Knowledge is mine,

And all purity,

All surrender.

"I want nothing.

I am free.

I found my way.

Whom shall I call Teacher?"

The gift of truth is beyond giving.

The taste beyond sweetness,

The joy beyond joy.

The end of desire is the end of sorrow.

just a quikie

I want to let you all know all is well and I will post later. I have written many "blog" posts but have not published for you to read. I am in my state of introspection. Once I am out of my head I will let it spill out onto the pages of cyber space as a writer lets the ink drip onto paper. In the meantime may all be well in your worlds and may we all feel grateful for what we have and for the gifts in life. It is easy to focus on hardships when so much bad news is at hand. The real test of character is if one can accept the "bad" stuff and move forward with optimism and faith that all is in order. Our lives have great purpose whether or not we see this. What one will find in the challenging times is a choice. One can decide to focus on the negative and slowly melt into a deep depression OR one can accept the circumstances and see the miracles and gifts in the unexpected. This also means one must feel every emotion fully. This requires much reflective-quiet time with self. I always ask myself: " Self....What are you feeling and how can I assist in letting go of the attachment to feeling only happy-good thoughts? while at the same time truly feeling and releasing negative thoughts? ". The end of desire to make things perfect in our perception is a final goal.

The answer I give myself is to be honest, present, open, genuine and grateful. Then the seemingly bad stuff fades into the mist as if a wind came and blew away the fog of human suffering.

Too deep? O.K. I will write more later. I told you I have been in a state of introspection.

I know I have been bad about keeping in touch

Well.......I am in that phase where it is strange writing the same old story. The daily routine has changed slightly and I am still up and down but mostly up !! I would say I am 80% now. I have more alert time and moving around more. The labs are all over the place so we are trying to get all the electrolytes and blood counts evened out. There is one test which shows muscle damage and those tests are coming in high but erratic. First they were very low. So if they get too high I have to stop the antibiotic. Are there other options? Not sure. I am advocating for the Dr.'s ( 3 main ones) to have a pow wow and give me aspirations and cultures from samples of both hips after two weeks off antibiotics. They want to redo the right hip due to the plastic wearing away and now have metal scraping metal. But they have to see if it is also infected. Before they do this I want to know if the first hip bacteria is gone. Seems responsible to me. I guess there are other concerns and possible options for airborne bacteria. So not sure what is going to happen. PT in the left leg-hip is going slow but good. Can not do anything with the right even though it is my "good one". If the prosthesis cracks it could crack my pelvis and cause major damage. But I have to keep it strong so I can heal the other one. Balancing act is the word for now.

My good friend-aunt Mary is staying with me and we are eating well and laughing. We are observing this crazy world in which we now live and there is nothing to do but laugh. I feel blessed to have so many companions !! Nina will be hanging with me Sunday-Tuesday while Mary goes back to Chicago to check on her condo which she is going to place on the market. If you know anyone looking for a place in Chi Town let me know. Nina and I were thinking of attempting a visit to Grandma's. We shall see. At the very least we will have quality time.

Douglas is in Asheville and all is going very good. The client is very happy so far. They are in full construction-design mode and has to be done in 9 weeks. It sounds like they will do it. I can not wait to see it and mostly HIM. He is missing home but having a good experience and loves the team. He also is staying with our very dear friend in Asheville, Constance. She just moved into her new space and he says she is the ultimate hostess with the mostess. I wish I were there to yuck it up.

That is all I have to say today. I have been writing a more intellectual blog for later. My brain works overtime at night with many insights but hard to write for the public.

Much love to everyone !!!!
Angela

The day was bound to come

The day was bound to come when Doug had to pack up the U-Haul and truck and head south for a ten week project. He will be back once or twice. I sure miss him when he is gone. It is mutual. I hope he gets a chance to rest before he hits the road. Hint hint..................

I met with the surgeon yesterday and the new left hip is healing just fine. I am on less restrictions and have more freedom. I feel great about this. Bad news always seems to follow good when it comes to my bones-joints though. More deterioration of the right prosthesis has made it more urgent to get it replaced as soon as I am off antibiotics. I have four more weeks of antibiotics and they will wait a week then aspirate the right hip to see if it is infected. If is not we will replace as soon as Douglas gets back no later than first of June. I saw the X-Ray which shows a dramatic breakdown from several months ago. The metal and plastic fragments need to be removed best as possible. The knees are hanging in there as are shoulders. I have had this hip for 20 years which is a very long time for a replacement. I am grateful.

Right now we are just monitoring my blood work and body making sure all is working as it is supposed to and my body continues to accept the antibiotics. Some labs are still off and not sure exactly why?? But with more blood drawn today I am sure we will come up with a plan to get me leveled out. Resting is the best I can do now.

The sun is shining and it will be nice all week. The sun makes people up here in north country very happy. Someone told me today about their "Happy Light" for seasonal affect disorder. I hear ot works quite well. I notice that I feel tired and blue from mid January to end of March. It is the lack of Vit. D from sunshine and lack of fresh air. Also less social contact. Everyone wants to hibernate over the long winter. The saving grace is the pure white snow and how beautiful it looks and how cozy the inside feels. So there is balance with us, the planet and the universe as the Yin/Yang of life continues.

Happy almost spring !!!!

Many questions..........most curious ones

Many of you who are brave enough have posed questions which are difficult enough to ask and even more complicated to answer........but I will attempt to quench your curiosity in my ultimate quest to help educate people on chronic illness and lupus/auto immune disorders. Lupus is not like cancer or other "Hollywood" diseases which capture much attention. It is a hidden disease for the most part. Those of us who do go out into the "real world" may show an outward appearance on some days of having issues with joints, walking, lifting, avoiding sun exposure, loss of hair, skin sores, blue fingers and toes, rashes, ports/piccs or other catheters with tubing appearing on our arms, necks or legs. We some have colon or urine bags and others who are dialysis. You may notice a fat and plump face with puffy eyes representing signs of possible steroids in action saving one's body from it's own attack. Or you may notice dark circles around tired eyes filling a pale face. These could all be signs of lupus. What you will not see unless you are very close to the person affected by lupus is what happens through out the day and night and during a regular month. A day in the life of a typical lupus patient does not exists, but we each have a routine which may change day to day or month to month. Mine right now, as some have dared to ask, is one of routine and schedules which are mostly about medical care and treatment or prevention. I am offering a weekday example.

As I explain my most recent routine I want you to understand this changes weekly. Two weeks ago I was in the hospital getting ready to come home post surgery and infection to an uncertain future. Now I am settled into a new schedule which may change over night. Lupus is like that and things change very fast sometimes. I also want you to know it is not just my life but my devoted husband's, father, family, care givers, Dr.'s, nurses, physical therapists, body workers, friends and others who all are impacted on various levels during the day, week or month. So in the next paragraph understand I am only explaining this past two week routine. My hope is the next two week routine is filled with more outdoor walks, garden prep, more social contact, higher quality of life with lots of motivation and more energy !!!!

Morning begins whenever I awake between 8-10 am depending on how early I went to bed and how well I rested. I take my probiotics and yogurt first to help avoid intestinal issues with antibiotics and steroids. I drink tea or coffee depending on how I feel. Juice depends on stomach and varies between OJ and prune juice. I eat a very healthy and high protein breakfast as this is the most important meal of the day. Usually Douglas and I eat together, share our dreams, our day's schedule and plans. It is a most enjoyable time as we sit looking out into an oasis of a back yard-wooded area and connect with one another before we are too busy. By this time Doug has been up for a while and has already spent hours at work, emailing, reading, studying, feeding the birds, creating designs in his doodle book with at least one computer on (geek). We slow down for this moment as it is brief. After we clean up I move to the medicine drawers and take out all my meds and supplements for the day. These change often but usually around 20 per day. Some pills, creams, shots and infusions. I set aside the ones I take at lunch and at bedtime as well. I have a list to follow but some days I do break from the norm as my bodies leads. We eat lunch or snack depending on the day and touch base with one another as the day goes on.

Once I am cleaned up, fed, filled with meds and connected to husband I begin my day of calls, emails, working on computer, web site updates, blog and writing. I usually have a nurse call or visit depending on the day and if they want blood and urine. I have home med deliver the IV antibiotics and medical supplies every wed. and get PICC line changes and labs drawn every Monday and some Thursdays. PT comes when I am able to do it. After lab results return they sometimes adjust my meds. I check my vitals(BP,HR and temp) which has been great lately. If I feel good I get a few things done around the house and in the office with regards to Doug's business, personal affairs and lupus advocacy. Some days I have phone meetings, lunch meetings or we meet at the hospital, usually involving volunteer work, which is now rare under the circumstances, but I am getting back in the groove and next week we meet to plan the next annual Butterfly Walk. I do some chores and exercises through out the day at least 3 rounds of exercises as body allows with walker and leg brace in tow. Most of what I do is range of motion and Isometrics. Some stretching only in areas able to get full stretch with out causing damage. Most chores fall on Doug's lap. He cleans, does laundry because it is in the basement, takes out compost,trash and recycling, shovels snow, ices the side walk, house maintenance, runs errands sometimes with me either sitting in the car or in tow, etc. I am now able to cook although he cooks often.

At 2:00 I get ready for my 3:00 infusion. I take the drug out of the fridge and let it warm. I prepare all the needles, IV line, change the blunt end canulla and start flushing lines with saline etc. By 3:00 I am ready to infuse 230 mg of Daptomycin into my port (PICC) which is in my upper left arm. They moved it from right arm to left in the hospital. Some days I have to change out supplies that get crusty-bloody, but usually everything is smooth. By 4:00 I am done and feeling slightly nauseas and tired. After cleaning up my mess I rest while watching TV and dosing off to sleep. By 5:oo I am ready to consider dinner and checking emails, voice messages etc. I usually talk for a long time with my sister Martha while she is cooking dinner and at times get a chance to chat with my nieces about their day at school. Some days I go to bed and take a nap before dinner. Some days I sit by the back porch with the doors open taking in the air and sunshine as we have had a few unseasonably warm days. I poor myself a glass of wine and ponder the day, news, life and all we are here to consider in this moment. Some have called this time of the day the "Groaning". It is that time when everything sits still and one is alone with their thoughts watching sun set and birds go back to their nests. My chipmunk friends sit with me staring in the same direction as if it is a natural order of life. Doug usually pops up from studio-office after his daily walk to connect, discuss dinner and get a much deserved beer and snack. Then he returns to the "Man hole" as I like to call it and I return to phone calls, emails, news check online and dinner prep or at least a list of "how to" for Doug. You know..........boil water, insert rice, bake chicken and steam greens. More complicated but you get the gist. Then we eat at the dining room table and chat. I take my evening pills mostly supplements with full belly. After we clean up and wash dishes Doug showers and gets me ready for shower by wrapping cyran wrap around my PICC and taping it up so no water can get in. He places me in the shower with a seat to bathe and then change clothes and prepare for either a movie, a book, blogging, reading, or simple brain out TV but usually only medical shows??? I always wanted to be a Dr. not a patient, but I love to learn. Doug usually continues working for a bit and closes up office-studio for the next day. Our night ends around 9-10 pm. We do enjoy our long chats before sleep and back rubs. I usually keep him awake as this is our joke. He tries to sleep and I try to keep him up. By 10:30 we are both snoring or in deep REM. Awake by 2 or 3 am with pains, hot flashes or other issues and also needing to pee and perhaps take a pain or sleep med or rub lavender on my head. Doug's back seems to wake him up and he usually makes tea and stretches for a bit then back to bed. Needless to say we get little rest at night around here. But we are together and have a roof over our head which is warm and safe. Blessed to be sure.

That is our day. Mixed with him leaving town to work and various Dr.'s and hospital visits this is it for the winter moment, soon to change. I hope this wakens you to the questions of "what do you do?". It is meant to enlighten those who have never lived with chronic illness. This past two weeks have been a breeze.

Lovely day

It is so pretty outside. There are many little critters scurrying about, eating the bird food and worms and seemingly preparing for an early spring. Our two white swans are down the road in the pond and the geese and ducks flying over daily. I have the sliding door open with the fresh air filling the house. Nice!! I would go for a walk with the walker but it gets so muddy due to a very wet week. Lots of flooding in the area. When it dries I might be daring. After my infusion I am very tired so I have to get everything done by 2:00 because it is sleepy land after that. I have not been to the barn to brush and love on Bart but very soon !!!! He seems happy in the pasture with the other horses.

Knitting project not going so well. Best of intentions. I'll wait for my friend to assist. Doug got a kick out of watching me pull apart a weeks worth of work. Eeeeks. Better with growing vegetables.

I ordered two new books from Amazon......."War and Peace" and "Anna Karinina". I have read WP but do not remember much. I feel everyone should read at least one Tolstoy. Plus I feel it speaks to our times a bit. I can concentrate better now and need a distraction like this to engage my mind. Also reading about gardening, chickens and eggs....................

I am going to a medical lecture on Wednesday about BHRT. Bio Identical Hormone Replacement has been challenging Dr.'s, women and pharmacists with the question: "Do women in their middle years deserve to have a natural way of controlling loss of hormones while at the same time having a more healthy and peaceful life?" In other words do we need to suffer? Men too. I know men who have lost testosterone and they need their hormones to abate cancer and to help with aging in a healthy way. I think we loose hormones faster in our new world of unhealthy food and environment. It should be an interesting talk. DHEA is now being used for lupus patients as well.

We are also having our Butterfly Walk meeting at UM next week to begin planning and also to discuss another educational event planned for May. I have four Dr.'s appointments in next two weeks to look forward to and will probably need a new PICC line placed in a week. I seem to be bleeding and you can only have them in for a month. I will be on antibiotics till end of April at least. As long as it is out and I am done by the time the water is warm.

My friend-auntie Mary is coming to stay for a bit while Doug is gone. She arrives Thursday. We have plans to cook and I will have her help me start my pepper and tomato seedlings for the garden. She will have plenty of veggies mid summer too as we always grow enough to share. She is an avid gardener. Her cottage on the island is filled with shade plants and really has filled out this past year. I remember she also used to work at the botanical gardens years ago. So we will have fun. Sad for Doug to have to go south but that is what it takes in todays economy. he has always worked on the road but I usually go with part time, so this will be different.It is only a couple months. No biggy. I can not imagine what the troops must experience. On that note I am tired. By By.

Neener my love

Nina you make mean greens and Orchids. Thank you. It reminds me of when we lived at the bio- dome and would make collards and chard we grew. Granny's Chicken comes to mind too.....Wouldn't that be a treat right now?........So thanks for the drive by.

So far so good

I am the second Daptomycin IV and all seems to be tolerable. I just get a little tired and some muscle weakness and soreness. They keep an eye on muscle enzymes and all symptoms. I think this one will work out just fine. It's just a half hour-45 minute infusion or and hour if I need to slow it down. Nap afterwards and all is good. Let's hope this is the miracle drug for the bug. They may have me take an oral for a few months as well once we are done with the heavy guns. I also read about oral hydrogen peroxide and clove oil as good antibiotics for this type of infection. I will look into all natural prophylaxis.

Yesterday at the infusion room everyone was so nice and welcoming. The Dr. on call for McCune, Dr. Patricia Cagnoli, who is very well respected as an associate director and instructor in the UM Lupus Program and Internal Medicine, came by to check on me while he is out of town. She was very warm, sensitive to Doug's concerns and thoughtful. I appreciate Sue Olsen RN and Dr. Gandhi as well who both work in ID. Sue called to wish me luck. You see all this is the human component which makes the process of being a patient so much easier to handle. My home nurse Elizabeth is great as well.

Gotta go IV running out. Thanks for checking in on me and Doug and know you are all in hearts and prayers daily. I realize there are many others who are going through trying times. To all of you who are we wish we could help more.

Human Hind Sight

Looking back over the past weeks I can see how a fissure can turn into a break quite easily under the lightest of pressure. I have had some time to reflect over yesterday and the night before. I spoke to a Dr. friend who helped me put some things into perspective from a physicians side. They have to keep a personal distance from the human element to protect themselves and make unemotional decisions which can cause great discomfort, hardship and pain to the patient and family whom they are treating. So they put up their shell and do their job with out allowing themselves to get attached. I can relate to that, however, at some point there does need to be a human connection. It can happen because I have it with many Dr.'s and health care professionals. I also see how they turn into different people when wearing the white coat, as do patients when they adorn themselves with hospital gowns and IV bags. In that way we each have clearly defined roles and numbers attached to each case so the humanity can be placed on hold while administering medicine. I do not agree but I accept that is "what is". I will be making it more of a mission to bring in the human element. Today at 2:00 I go back to hospital for a new infusion of antibiotic (Daptomycin). Hopefully it will work. They think I will only need the IV for a month. I hope that is all. Can you tell I am stir crazy? In need of getting my life and health back? heck yes !!!!!

The birds in our feeders are becoming more varied and even finches are landing once again. The ducks and geese are flying back up north and a change is in the air. I saw a woodchuck but not sure if she saw her shadow? Friends are talking about their gardening plans for the year. We compare seeds and plans as if we were entering a 4-H club. The excitement of growing food and digging in the warm dirt gives hope and a sense of accomplishment seldom found in our highly technical world of sterility. I look at the homes in subdivisions as I drive by and notice not a single child playing outdoors. It is a whole new world. So perhaps spring will bring us out of our shells and we can begin the plans of outdoor adventures this summer and connecting with mother nature.

sometimes emotions get the best of us

During this entire five weeks of ups and downs due to "infection" and antibiotics it finally got a hold of me. I do not cry much or get too upset. I tend to care more about others feelings than my own, but last night I broke down like a dam breaking under pressure of rushing waters. I am exhausted, frustrated at the whole situation and feeling helpless, which is rare. I am usually the advocate helping patients deal with this stuff not the other way around. Humbly I look back and see Douglas and I have not had a break from the stress of it all. In a week he will be in NC working 16 hour plus days and I will be here on a new antibiotic-homebound and weeks behind in physical therapy.

I keep waiting to wake up and feel good but after an hour or two of feeling good I slide back down. No particular reason I am just not quite right. I was feeling so good days after surgery and now I feel weaker than I have in a long time. It is not anyones fault but there does seem to be some issues with communication and understanding of my total condition by those who do not see many lupus patients. It is a difficult disease. my lupus Dr. is out of the country which adds to the concern.

I also just opened a letter from Home-Med telling me I received a recalled batch of antibiotic "Vanco" the week I went to hospital. That could be the culprit of all the illness since that time. it would explain a lot. This would be the second time I have taken recalled meds with horrible side effects. Can you understand the frustration? Sorry to whom it may be aimed but this is a life. A human life and not a number or statistic. The human element is not supported in most medical situations because of the failed system with Dr.'s and nurses who are wonderful and caring but only have so much time with too many patients in their care. More patients die while in the hospital from medical mistakes than any single disease. Check the stats on Oprah.com(do not quote me ask Dr. Oz). This is why advocates are necessary. Us patients and worried family members are often considered a pain or high maintenance yet when a physician has an ill loved one they are lions. We as patients must take our lives into our own hands and ask as many questions as possible. Knowledge is power and power heals. I am using this experience to help my situation and others. I still feel UM is one of the best and I will continue to be a strong advocate and spokesperson for the lupus program, but I will roar !!!!

Tears

It's 9:11 pm as I start this writing. It's been about an hour since I finally heard from Angela's Infectious Disease doctor...day's late. I have a mixed bag of emotions I'm working through at the moment. I just took my sweet wife to bed doing my best to soothe her in all of her tears. Typically she is the strong one; I’ve never seen her cry in such a way.

I've been witness to Angela enduring much pain through the years; fractured bones, numerous surgeries and a deep tenderness for those whose hardships extend far beyond her own. Immediately after her shoulder replacement she kept herself centered for hours, without tears, without any pain management while the hospital staff awaited instructions as to how best deal with the pain block which slipped from its targeted position. Doctors orders were missing…Angela’s pain threshold is so far beyond what most can understand. Tonight though was a different kind of pain.

Angel is at about 65% of herself, she just hasn't bounced back as she normally does. The hip surgery isn't the issue; it's the most recent bought with practitioners and their protocol which has taken the wind from her sails. She's craving to get back into physical therapy, to push herself beyond her range of motion just to reassure herself that she will indeed be able to plant her garden and walk in the grass...something is holding her back this go-around.

A number of days passed since her successful hip surgery when we received a most important call from the Infectious Disease dept at the U of M. An air of ‘emergency’ rushed us into the hospital to control an infection which cultured 6 days after the surgery from material removed from the failed hip joint. We were notified of the find days after the culture was recorded. Infusions of powerful antibiotics were I.V.'d in hopes of controlling a bacterium which may have grown from something other than her tissue; a 50% chance it actually existed. A PICC line was inserted through her arm into an artery to ease accessibility and discomfort of repeated blood draws and drug doses administered into what little veins she has left from years of chemo and other. She was fortunate enough to be able to be sent home for the six weeks worth of antibiotic infusions; to heal in a better environment thanks to home nursing.

Soon, a fever surfaced and she was re-admitted to the hospital for more antibiotics and blood draws. Now her vitals started fluctuating and Lupus kicked in as her body attempted to deal with...an infection? I must admit, as did Angela recently, we weren’t sure if she’d make it. With the doctors coming in asking us what we want done in case CPR had to be administered, we had reason for concern. For some reason, perhaps because Angela is a veteran at caring for herself and knowing what her body is telling her...we sensed her body was rejecting the antibiotics. As a precaution Infectious Disease orders more antibiotics - administered on top of those Angela's body was already rejecting. ID seemed not to yield to our concern for a Lupus flare. Something was amiss, we both felt it in our bones - more so for Angela. Bone crushing pain comes with the added steroids used to control the now activated Lupus and pressure from a fever which repeatedly jumped from 98 to 102+ in a matter of minutes. This went on for days...yet, still, no sign of the doctor who set us on this tumultuous journey. Enough! The amount of time in the hospital and the seemingly dangerous redundancy of blood letting, temperature spikes, anti-biotic over-dosing and lack of sleep made it clear that Angela's hospital stay was futile and causing more harm than good. A break from the treatments a must...! The doctors all concurred, it was in Angela's best interest for her to go home and have a break from all the TLC.

After a weekend home; a stable environment, Angela’s vitals returned, somewhat reluctant but comparatively better. A follow-up exam by Infectious Disease a few days later was intended to start Angela on a new antibiotic. A few professionals we spoke with declared the new treatment as an "experimental" as did our on-line detective work, yet, Infectious Disease said it was a common treatment. Angela, through her research, found that our insurance didn't cover the drug. Upon sharing this info with I.D., the doc declared that in fact it was covered and that she sent people home on it all of the time. It was her intention to send Angela home with the new antibiotic so, as the doctored said, I quote, "…Angela won't be tortured anymore". To Dr. ID’s surprise, her nurse entered the room stating that, in fact, the anti-biotic that is sent home so freely with so many ill and financially strapped patients is NOT covered by insurance!

Here we just threw away thousands of dollars worth of antibiotics and equipment we were unable to use and yet we were being prescribed more of the same for a now 30% chance of infection...and being prescribed something that is considered an experimental drug of which we will have to pay for....?

We were sent home again, being reassured that we'd receive a plan of action to deal with this supposed infection with a treatment that our insurance would cover...good news for a couple who moved away from their source of income to be treated by one of the top rated hospitals in the country...Good...we'll have a course of action, I will finally be able to work after months without, out of state, while my wife is being cared for by the best of the best. It's was last week when we last heard from Infectious Disease and now, days later, I hear from her… only after an SOS call to a U of M patient advocate at the hospital this afternoon. We had not heard from nor could we reach anyone who was related to our case - Infectious Disease was closed today. Even with this evening's call from the Doctor who initiated this insane experience, I remain unsettled; she was oblivious to the situation and to a course of action.

This is what brings me to this writing. Angela has given every aspect of her life over to the University of Michigan. She even donated her body upon her death to the U of M just so doctors-to-be will get a glimpse of an Angel – eternally infused with hope, surgical scars as maps, organs stressed to the max, metal joints through-out and a heart of solid gold....just so they can learn to be better doctors. Yet here she is, barely able to stand, talk or even cry...with a hose in her vein which no one can do anything with until they have a doctors orders...which we have yet to attain.

What the hell happened???? Angela has donated her life to the hospital. She lives to give to the U of M and here she is crying tears because why? Pain? Fear? Exhaustion? Yes to each...but most of all...because the human element has been left out of her care. She is in a report, a file, somewhere...lost amongst all the other patients who get 15 minutes or less of time from professionals who are in the business of taking care of people…

Wait... For some strange reason, I can't help but feel that the business of taking care of people is really about a health care system that takes care of itself, the insurance companies, Big Pharma and their new and very expensive wonder(?) drugs. Instead of building multi-million dollar atrium's and architectural wonders out of hospitals, the money they invest should go into teaching doctors-to-be how to tend to patients as people rather than patients as line items!

I assume I'll hear from Doctor ID tomorrow....better then than right now......

(as an added note: I am grateful to the many health care professionals who have provided Angela with the care which keeps her giving the best of herself...thank you!)

Frusration breeds contempt

I am frustrated today. Last Thursday infectious disease told me I would here from them in regards to new antibiotic by Monday and here it is Tuesday and no word. I even called and left a message. What am I to do? I am putting my life on hold for this and pretty sick of it. If I could pull the PICC line out and end it all with out damaging insurance and my health I would. The least they could do is call me to tell me they are trying to figure it out? The human element is missing in this equation. Most frustrating. The greatest brains in the US can not see the human side? If it were their wife, husband, sister, parent or child they would feel it to the very depths of their being.

Had to vent. Other than that all is well. Rainy and cold today and spring is on it's way withing a month or so.

I read an interesting article on Tibet and their fight for freedom of China's rule. So many details over the years we have forgotten. The CIA helped in the beginning but it was a failed operation. Now Tibet is stuck. No autonomy or active political leader within the country. The DL is a spiritual leader who acts as political leader but with out any power. He does the best he can with the tools available. It seems we would learn much from their patience. I wish China would leave those poor people alone. Let them figure it out. History.net for further information.

Enjoy your day............................

Could it be spring? "NOT"

We are always faked out by a warm snap and rain storm. Today we watch the rain and warm air-fog daze us into a false sense of spring. Spring forward tonight before you go to bed. We will take what light we can get. It makes me feel like having a fire in the fireplace and reading all the magazines I collected for my recovery period. I am ready for a good book though. Any tips? Something with a good story.

As we face more lay offs in the US and hear all the news on the air waves it is difficult to imagine where the world will be in a few years. I hope our future generations are learning from our mistakes and mis-spending. It is a double edged sword. If we save we stop commerce. If we spend what we do not have we will find ourselves in bankruptcy and living in tent town. The TV financial "experts" have lied to us and told us to invest, invest and spend even while our credit cards were over limits and costing us more and more interest. Now we have bailed out banks who have the nerve to raise fees and interest rates on us? They should be paying us a percentage of the $6,000 per household we loaned or gave them to bail them out. Finally the curtain is being raised and the financial-OZ is a bad person. But you will not be reading about it in news papers in the near future because they can not afford to print. It is amazing to me how the world is changing right in front of us. Hang on to what is important and support your local businesses. They need it now and we can survive this turmoil by helping our neighbors. In that there is hope.

For the record

I did not post this photo.............Doogie? Whatever will I do? Funny non the less. What would the world do with out you tube now? I do not even know how to use it but I know it is chock full of interesting photos.

My dear friend of many many years just visited for a couple days. Sharon I adore you !! Thank you for your help and love. She was a huge help for Doug and I during a trying period. I am doing better but as I get stronger the days get closer to try another antibiotic. I thought they would challenge me with Daptomycin yesterday during my visit to the hospital to see Dr. Gandhi in infectious disease or today at home, but we will hold off till Monday to make a decision. My blood counts are coming back up and leveling out on all labs. There is a little issue with insurance. They will not cover the IV antibiotic at home as it is a new and expensive medication and so we have asked the hospital to cover the costs if they feel so strongly I need it. I will make the final decision weighing out all options and ramifications. With a right hip revision in the near future(and knees) I feel I should be on some kind of antibiotic. They now are telling me I could take a pill but there is no guarantee it will work. Day by day is where we are with all of life as most of us are. I look forward to a day when I am back to myself, strong and healthy. I want to dance, feel the wind in my sails, work in the garden and do all the things I enjoy with out being a pin cushion or medical experiment. Glad to help future generations and to find a cure for lupus but the rest of it really stinks sometimes. I am a fighter though. Nothing will knock me down.

Douglas is not sure when he leaves for NC as it also seems to change weekly. Behind schedule and that is a little frustrating but it works with our situation so he can be here with me during this time frame. To be continued.

It is 60 degrees out and I can feel the spring sprouting but we will surely have one or two more cold snaps and snow falls. Michigan is notorious for having an April snow. I can not wait to dive into the lake this summer. The water is up and I am in need of exercise. Pools are cool but lakes are great !!!!

Love and blessings,
Angela

clarify "diapers in white coats"?

Let me clarify diapers in white coats? Some did not understand of whom Doug was speaking(writing) during his delirious hospital stay. Let me explain. U of M is a teaching hospital. Each attending physician has a few interns, residents and students by their side learning the trade and hopefully bedside manners. Some are as young as 22 years old to 28. They all look like kids to us middle aged folks. There were a couple who had little hospital experience and it showed. I gently did explain to one of my Dr.'s for their own good. They need to know these things. One poor fellow fell into my bed with nervousness. I giggled and then squinted eyes in wonder. Another did not read my chart, had a language barrier and we thought he was asking "what are the symptoms of lupus" when in fact he was asking "what are your symptoms with lupus". All cleared up now? For the most part the young dr.'s to be were very intelligent, thoughtful, provocative and had good bed side manners. They were prepared. two really stood out on my mind. I will mention no names. One Dr. on the floor was very attentive and invested and we loved his sincerity. Doug's humor can be askew after weeks of little or no sleep and very bad food.

All in all a teaching university is very important in shaping these young minds and hearts. One patient can change their entire perspective and it is my wish to be a part of that change. The diet and nutrition is next.

the wind in my sails

My dear friends and family your kindness is keeping me going. Karin thank you so very much !!! Our visit was great and comfort food fabulous. Yes I am very focused on food, but what else do I obsess over? Don't answer..........I just want you all to know how much I appreciate you. My friend Sharon comes tomorrow for a couple days and I am really excited. We are going to knit a cover for my PICC line and port. I get it caught on things and it looks scary. Me, being so not crafty, will attempt a project I hope I can easily accomplish. Those of you who remember when I tried to knit 25 years ago will know what I am saying. Those size 45 sweater vests must have been put to good use as a doggy bed or door mat? In polyester no doubt. Give me dirt and recipes and I am good but give me yarn and who knows what will happen. Forget buttons too.

I am feeling better today. In a week Douglas will be going south and still trying to wrap our heads around that. Wish I could go with him but he can come home during project.

Snow feel on NC. What a great thing. my nieces played in the snow. I hope you all enjoyed ot down there. We get another round Friday.

Love and peace out