Death came as it does.............

Popa Gross, Joseph Gross, Died on Sunday at 6 pm at home with loving wife Vera and Daughter Marilyn. He was in Hospice care and in no pain for the last hours. Saturday we were with him as he suffered with body shutting down and then morphine and all the end of life savers were available. Thank God for Hospice !!! if you want to make donations you can do to Hospice or www.amsterlupus.org. Grandma has decided to have a private military burial of his ashes in Michigan where they both will rest in peace eventually. No memorials as of now as per his wishes. I guess at 92 there are few friends left and family is so scattered.

I had a tough time Sunday eve and cried in the garden with my man by my side. My Popa taught me how to garden so it seemed approriate to honor him in that space. I realized this week of July will have three major death anniversaries ( 8th my grandma(mom) saul, 10th my birth mom and 12th my grandpa gross) not to mention three other deaths in the family in the past month. What a wacky time. So last few days I have been low energy and emotionally drained but good. Douglas had to fly out Monday am and I have just been alone with my feelings and working a little in garden and on the lupus education program at UM. These things keep me busy in mind and body yet my heart is till weakish.

Michigan summer is here. Hot and muggy today after a chilly morning. Lupus is hanging out a little letting me know I need to rest and avoid sun. I am doing just that.

My wish for us all to have peace and love in our lives..............................................

Popa is close the end.....and Nina's niece died..........

Sometimes the world does not make sense but there are reasons for everything. My 92 year old grandfather who is in hospice, no meds, no water, no food, no ice chips, body not functioning and in pain is wondering why he is not dead. At the same time one of my Step Moms, Nina, has just had a huge loss. Her niece who was 42 years old( my age) just passed away a few days ago after retiring fro care at homem 23 years in Military service and finding the love of her life? Why? How does this happen?

After we left my grandparents we felt like we wanted to do something to help him go peacefully. Not what you think, but pray for his soul to go in peace and "so be it". I look at my exhausted grandma and aunt who are watching over him 24/7, both with auto immune disorders, and I wish I could do more. Hospice has been great though. They are there when needed. I think what he needs is pain relief and some quiet time with out everyone fussing over him. He used to play the violin in the Detroit Youth Symphony and loves classical music. I wanted to play that instead of the food channel, which was on. But these are choices people make. When My mom's mom died( Donna...I call her mom too) four years ago July 8th, we had her favorite tunes on the CD player in critical care (private room), we lathered her with lavender oil and lotion, rubbed her feet, gently scratched her back(which she loved) and took turns lying in bed with her as she lay in a coma for almost a week, telling her we loved her and all was safe for her to go. She did go after her all the family arrived and a rainbow filled the sky while Amazing grace played on the CD player. It was her favorite bag pipe version.

I have been with so many dying people and have lost so many loved ones I guess I am OK with it all because I know there is peace on the other side for most. It is my prayer tonight that Popa go in peace and in no pain. I also have great hope for my grandmother to live a little longer to enjoy life and do the things she loves. She deserves that after years of care taking, but I fear she may follow close behind and she even says it at times. Both her parents went within days of one another. I am selfish and want her to stay !!!! In Peace..................

So glad Douglas had a chance to be with him. Popa loves Doug like his own and Doug is so good with him. He brings peace to the place. For Popa and me. Douglas was with his own father at the end too so he, as me, understands this process. Tiz a journey which is inevitable. Then a new life is born.......................

This is the annivesrary of my mom's passing

Yet I feel VERY MUCH at peace with myself NOW, i went through most of my emotional anguish this week and last. There were many death anniversaries and some other recent deaths and major illnesses plus other relationship issues which I rarely have in my life. I felt as if the planet turned upside down starting two weeks ago and ended this morning at 3 am. I had a couple dreams, which if you know me, are epic in proportion, and also cathartic. Now I feel a sense of relief and total peace like normal. There for a couple weeks I was not pleased with my emotional state. I am not easily depressed but then I realized the death anniversaries and many mother issues, which are really in the past, yet surface during this week every flippin year. It is cyclic. Not just for me but my sibs as well........................."Step Sibs"? Being an only child my sibs are still the real deal with different parents. Then it came to me in a dream.........................all is well and as it is to be. Faith and gratitude in "all that is" helps me keep this sense of peace, even in rough waters.

I am new to face book. Do not hang me out to dry yet. It is a whole new obligation and I may not hang in there. I like writing on my blog, journal,letters,cards and in emails.............not to mention I have been writing a book for years. So FB is fun for now but do not be offended if I drop out. It is fun though........I have reconnected with so many people it is amazing. I hope it continues to be those with whom I want to connect. Some weirdos out there................??????? (not you doog) well actually, yes you are a weirdo, but in a good way.

In the meantime I have been thinking about what it means to be a good friend. That is a challenge for anyone much less someone who deals with a chronic, unpredictable and at times life threatening illness. Then add a husband who works odd hours, out of town and mostly for long periods of time, with his own health challenges. It makes life at home more interesting and unpredictable. This means I have to go with the flow on a moment to moment basis which drives most people crazy. I understand why. I have lost a few friends for this reason and I totally understand. What I want to say is "Try to place yourself in others shoes". If you have an illness which can appear at any moment( sometimes invisible to the eye) and never know if you on your butt for an indefinite period of time; would you feel compelled to make commitments and keep them even if it meant you are placing your life in danger? Would you want people to feel uncomfortable in your presence if you are pale, weak and looking like crap sometimes with tubes hanging from you? Do you know how hard it is to say to "NO" when all you want to say is "YES"? Well let me tell you it is not a fun ride but it does offer an opportunity to take care of ones needs while attempting to offer enlightenment at the same time. Jesus spoke of walking in another's shoes and he did not mean Nike Air. This is the real deal people. So for those of you who feel disappointed because I can not make a dinner date, grand opening, shower, wedding, a visit, party or whatever...........please know my intentions are good and "I can be flighty at times". Like it or not. If you want to be in relationship with me you have to deal with it. Douglas and I work very hard at simply maintaining our home-space, business and health. That is all we have to offer at the moment. I will not be offended, equally, if you can not be available to help or support us when we call. We TOTALLY understand. Life s a gift and peace is a choice. I desire to have drama free relationships which nurture each person involved, so if you can do that you are a real friend-family member. Which I treasure. If not then I understand and will miss the connection.

Love and blessings.......................................

snake in my way???no way !! it was transormational

I have been interested in native american tradition, culture and history for many years thanks to my uncle Max Saul and my grandparents(Gross') and a friends (not a big history geek so don't try to challenge me on it) but I do know snakes in many indigenous cultures represent change or transformation. I am a portion Cherokee and researched a bit about this. I also attended some native ceremonies) which were eye opening. Snakes are a reflection of our need-desire-path ( whether we like it or not) to change or shed the past during certain times of the year. It is like a chicken molting or a butterfly morphing. I have always had a snake live by me, walk by me, under me, over me or with me while I was approaching a challenging time or in the middle of it. You can call it folklore or whatever but it has been a steady in my life and it's "medicine" has served me well. If you have a special pet ( horse, dog, cat etc.) then you know they carry medicinal-healing qualities just like wild animals. I personally want to Cap(ture) a few raccoons in our yard................and some skunks and chipmunks, But for the most part I am all about the animals having their natural lives and somehow wisdom which in many ways affect us. The trick is knowing what they might be saying, metaphorically, in the grand mystical native sense. In my opinion..................The photo to the right shows the black snake we had at our dock (which no snakes have really been present for many many years in cold Michigan)...We had some smallish water snakes.....................but this was a bigger version of the non poisonous version. It made me feel peaceful for some reason. maybe the way it just stood still staring at me while I shoved off shore?

I can clearly say that this past two weeks has been all about family, obligations, disappointments, memories and mother "issues". I am a motherless child considering all the mothers I have had. Steps, Grands and God Mothers included. I seems to have been short handed in a way, yet so blessed all at once. I mourn for my first and second mothers Pam and Donna who both died this week years ago. I also mourn for my grandmother Vera who is now ill and taking care of our Poppa at home with Hospice. I was there today to witness the love she has for him. The mother role she admits was not her gift, Yet to me she was everything a mom should and could be. Her mind drifts and she toils after her love. She always has and worried her love for him took away from the love for her kids. Her life devoted to a man no one understood. I love him so very much. My relationship was different than that of my other relatives. My mom was very close to him too. I guess I am saying that my grandmother may have felt like a bod mother in some ways, but to me, my mom and her husband she was the rock !!!! and still is. She took care of my mom when she was so sick. She has always been there for me and everyone else who has needed her. I fear she will die not knowing this. I fear my Poppa will die not knowing how much he was loved or at least how much by her. Sometimes years cloud good memories. His tears today showed me he did not forget and I will see him in my dreams soon(pain free). The tears I shed.

When I left today I kissed his red, cold, balding head filled with sarcomas and bloody nose from a life prolonging oxygen tank........I watched him struggle to utter even the simple word "yes" for water or soup which seemed painful to swallow. Yet no complaints. Only a loving hug and gesture from Grand-Mom that all is well. When I kissed him good night I told him he could let go and I love him and to promise to visit me in our dreams tonight. He started to cry as did I and we shared a moment which now make me cry. It reminded me of the moment we shared on July 10, 1975 when he told me my mom died. Now we are full circle, and eyes wet with tears I did not hold back, nor would I try, I find myself pondering family and the roles we play, or decide not to play, and to whom or whom with not we share our love. Why is the answer. The answer is only in how we let it affect our lives now. Why we hold back?

In a sense I know lives have been lost......lives will be lost and mothers and fathers are just humans trying the best they can to play the role. I miss my moms and I am foreseeing the loss of a" Grand-father". Tender night..............week......for me. As for the others (you know who you are) who have been going through similar sadness............My heart goes out you all. I know it is not easy saying good buy. Let the snake energy of transforming take to that place of letting go and letting god settle this quandary. sad night..............................

long view of july 4th garden......michigan ? a little slow

We have been picking peas, savoy, parsley, herbs, lettuce(still), arugula and a carrot. I feel very good about today's bounty. I made a Quinoa salad with peas, tomatoes and herbs in a lemon, herb dressing and some arugula and lettuce for our neighborhood pot luck.

Yesterday Mary V., My step mom, buried her mother, who passed many weeks back Calaifornia. The ashes were buried next to her husband, Julius. My Poppa Gross on the same day was admitted into Hospice Home Care and we will move him to home Monday with all the equipments-bed etc. needed to make it easy in grandma and Aunt Marilyn. My birth mom and my other grandma "Donna mom" both died this same week. Very tender for me as always. I have lost many moms now on this week. I have a very different way of looking at death due to my experience..............yet it always carries with it an Aura which can not be described. I smell my mom and I feel my grand-mom at times and it is inexplicable.

Douglas "finished" a home garden project which has been in the works for while. Looks very good. Reminds me of Johnny Depp or "Pearle" if you are movie buffs. Bonsai and trimming bushes..............We went to the farmer's market and bought a few plants for our front yard plus beets and lamb meat from my favorite farmer gal. We ate fresh Tamales from Pillar's booth. $4.00 for a tamale with slaw and sauce. How fresh is that? Doug got hibiscus tea. Next week our hibiscus plant will be in full blossom so we can make our own. Glad she was full and everyone was so happy to have a cool summer day.

We miss our family, sons and Lauren very much. We miss our friends very much. If you read this and want to connect you can. I am able to handle calls and emails and even visits. I am quite well for now. Please do make contact. It is hard to handle illness but you may have to one day use me and Douglas as an example of a positive way to handle it truthfully. You may also need support? We understand.

Also a month ago my brother in law and sister in law lost their Father who had been suffering for way too long with cancer. Our prayers go out to them and their mom who is now dealing with early dementia. Much love to the King family...................

Freedom comes in small packages..............make sure you see them, open them and enjoy their gifts. Unknown at times. I sure feel blessed by my freedoms. Happy Fourth and freedom Day !!!!!

from lupusnow.org genetics and lupus

What’s in your family tree? The latest thinking about lupus and genetics
by Jenny Thorn Palter

Bring the new baby home and you’re likely to hear, “He has his uncle’s ears,” or “That expression reminds me of her grandpa!” Later on, there may be other comments: “He has his father’s talent for music” or “Her grandmother loved to read, too.”

What you won’t hear anyone say is, “She’s going to have lupus, just like her mother.” That’s because there is still no way to predict exactly who will develop the disease and when -- or why.

Same Family ...

Christina Gomez, 21, and her younger sister, Adriana, 19, of Ontario, CA, know a little something about genetics. They both have lupus. In the Gomez family, the predisposition for autoimmune disease comes from both parents: Their father’s mother and one brother have severe rheumatoid arthritis, and their mother’s brother and a sister both have type 1 (juvenile) diabetes.

Adriana’s lupus diagnosis occurred in September 2003 when she was 13, after severe pain and swollen joints in her fingers caused the family to seek medical care. The first doctor said Adriana had rheumatoid arthritis and referred them to a pediatric rheumatologist. There was a two-week wait for an appointment, and Adriana says she spent the first week on the living-room couch. “My body hurt so badly I couldn’t move. The following week I saw the rheumatologist, who said it was probably something called lupus.”

... Different Symptoms

The pain also started suddenly for Christina -- in her legs and back, in 2007 when she was 19. “I couldn’t get out of bed. I couldn’t even turn my head, it hurt so much,” she remembers.

Within a week, the pain became so bad that she had to be carried into the emergency room. She couldn’t move at all. Her family suspected lupus all along, and after all the test results came back, she was diagnosed with lupus. That was nearly two years ago.

Even though Adriana had been told that lupus can occur in families, she was surprised that her sister developed lupus. Then when it happened, she expected Christina’s lupus would be pretty much like her own. “We’re sisters, we got diagnosed with the same condition, so you would think it would be the same. But after she had to make several visits to the ER in just a few months, it was obvious that her lupus was much more active.”

When asked how she felt when she learned of Christina’s lupus diagnosis, Adriana says simply, “I felt sad. It hurt to know that someone so close to you, someone you love, would have to go through the pain and suffering you’ve had to put up with.”

Why Lupus -- Why Me?

Humans inherit genetic material in the form of DNA (deoxyribonucleic acid) from their parents. Normally, this information is on 46 chromosomes arranged in pairs -- 23 chromosomes from each parent. A chromosome consists of a single, very long string of DNA called a helix that holds thousands of genes. Current science suggests human chromosomes carry 20,000 to 25,000 genes.

Genes are an important part of what determines physical appearance, behavior, and your susceptibility to diseases. An error or mutation in just one gene, or a change in the basic arrangement of chromosomes, can cause a serious medical condition. But most genetic disorders cannot occur unless both the mother and father pass along the responsible gene or chromosome. We do not yet know the exact causes of lupus, but it appears that genetic, environmental, and hormonal factors are all involved.

Studying twins has proven very helpful in examining the genetic and environmental influences that may cause disease. Identical twins possess the same genes, while non-identical twins, like any other siblings, share on average only half of their genes. Regardless of their genetic background, though, both identical and non-identical twins usually grow up in the same environment and share similar exposures during childhood. Therefore, comparing how frequently lupus affects identical versus non-identical twin pairs can provide valuable information about how the disease is influenced by genetic and environmental factors.

According to Frederick W. Miller, M.D., Ph.D., chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences at the National Institutes of Health, research shows that there is a 10 percent to 25 percent chance that an identical twin will develop lupus if the other one already has it. This drops to a two percent to five percent chance among non-identical twins. Compared with the approximately 0.08 percent frequency of lupus in the general population, this suggests that lupus has an important genetic component. Studies also suggest that the likelihood of developing other autoimmune diseases is higher in families in which a person has lupus.

Miller puts it this way: “There are multiple shared autoimmune disease genes that can get you into the theater of autoimmunity, and then there are other disease-specific genes, and probably certain environmental exposures, that escort you to your particular seat.”

There are few absolutely “good” or “bad” genes or environmental factors, Miller says. “Rather, the environment in which a gene operates defines how useful or harmful that gene will be, just as the genetic background of a person often determines the extent of the effects of environmental exposures.”

A Mother-Daughter Bond

Vivian Scott, 52, who lives in the Seattle suburb of Snohomish, WA, was diagnosed with lupus on April 6, 2000 -- the one-year anniversary of her thyroid cancer diagnosis. “Not a big fan of April 6!” she quips.

But the diagnosis led her to discover that she has a first cousin with lupus. “When I asked my doctor if diseases like lupus tend to occur in families, he told me that some families have a ‘propensity’ for them,” she says.

When Vivian was growing up, she remembers her mom would talk about how she and her twin sister were always considered ‘sickly,’ which was blamed on the fact that they were born prematurely -- a signature event for moms with lupus. “My grandmother would have been around 22 when she had my mother and aunt, and then she died at 26 of a brain tumor -- or so the story goes,” Vivian says.

It wasn’t until a few years ago that she considered this might all mean something else. “I visited a small farmhouse in South Dakota with my mom, where she had lived as a child, and she told me, ‘I remember my mother in this bedroom a lot because she was sick and we didn’t know why.’ That’s when I thought maybe there was more to my grandmother’s passing than the oral history indicated. Unfortunately, my mom was only four when my grandmother passed, so all we have to go on is hearsay.”

Vivian remembers being hospitalized in the third grade -- first, the doctors suspected leukemia, because the blood work was confusing. Then, they said it was rheumatic fever. Finally, they said they didn’t know what was wrong. She remembers fainting in grade school and junior high, which happened to her mother as well.

“My mom remembers me whimpering and crying a lot when I was little,” she adds, “and no one could figure out why. It also took years and years for me to get pregnant. My mom and sisters would joke about how fertile they were -- and then there was me.”

In spite of what she learned from her doctor about lupus running in families, Vivian says she never worried much about it while raising Vanessa, her only child. “I was horrified the day she came to me and said she didn’t feel well and both her arms ached. I just knew.”

Lessons Learned

When Vanessa was diagnosed with lupus in December 2002, she was a 17-year-old high school senior. Although she can’t recall a particular triggering event, she remembers being worried about taking the SATs and deciding where to go to college.

“In the summer of 2002, between my junior and senior year, my mom, one of her sisters, and I took a family road trip through South Dakota. I was so tired and felt weak, but none of us had any idea what was wrong, so we kept stopping at hospitals and health clinics along the way. The doctors thought I had mononucleosis, but the results were negative, so they didn’t know either. That was kind of the beginning of it; it wasn’t until probably November that we thought to ask about lupus.”

Vanessa was fortunate not to miss too much school during her final months in high school—but she had some inside help. “The nursing staff at school felt really bad for me, so they’d let me take little naps throughout the day,” she says. “Also, I told all my teachers, so if I was having an extremely off day, they’d let me go home early or come late. I just pushed through, and then I would go to bed as soon as I got home from school.”

This same determination now is helping her cope with the demands of her studies at Seattle University School of Law, where she is in the top 8 percent of her class. “I’ve wanted to be a lawyer since I was 10 years old,” she says. “I’ve always believed that if I can do this, I can be successful in anything.”

As for lupus possibly appearing in a fourth generation, Vanessa says she went through a phase of not wanting children, but now knows that she does. “I don’t know the odds of my children developing lupus if my mother and I have it, and I definitely would talk to my rheumatologist about that. It’s a hard thing to balance: deciding to not have a child in case it develops lupus, or deciding to have a child because if it did develop lupus, I would know what to expect and how to deal with it.”

The Possibility of Gene Therapies

So, while lupus is not hereditary in the traditional sense -- it is not the result of a single-gene mutation or a particular chromosomal error -- genetics researchers have uncovered information that may one day lead to innovative therapies.

One of the most exciting is the discovery that two gene mutations in the complement family -- C2 and C4 -- are linked to the development of lupus. The complement system is a group of proteins that work with the immune system and play a role in the development of inflammation. It is estimated that C2 deficiency occurs in one out of 10,000 people, nearly one-third of whom will develop lupus, and it is the most common single-gene deficiency seen in people with lupus.

Another area of study is the interferon pathway. Interferon is a protein produced in response to a viral infection. It acts to suppress viral growth. Increased interferon activity has been shown to be a heritable trait in families with a history of lupus.

Michelle Petri, M.D., M.P.H., director of the Hopkins Lupus Clinic at Johns Hopkins University in Baltimore, sees many women with lupus who are planning pregnancies or already raising children. She talks to them about the possibility of lupus or other autoimmune conditions in current or future family members. When she fields questions about genetic testing for lupus, she tries to be realistic but also hopeful.

Freakin Blimpy Burgers........A2 to Asheville Freakin prevails

OK I admit it has been many many years since I ate at Blimpy and do not even remember doing so. I see it on campus and I know it is an Ann Arbor(UM) institution, especially for students and musicians, and now that it has appeared on the food channel with Guy's "Diners, Drive Ins and Dives" it has gained a wider national crowd. My husband and I went today after we went to the farmers market and ran errands. We waited in line on a Wednesday afternoon for 15 minutes and I got yelled at for sitting my tired hips on a seat when all are supposed to stand until food is in hand cafeteria style. I ordered properly while my sweet Doogie just looked dazed and confused, understandably so. You have to know the routine on how to order. I luckily was privy to this information enough to know when to order what and how to order. The sitting part threw me for a loop but I was not going to argue with the dude making my burger. Once we got our fried veggies(tempura style-which were light and yummy not mushy) and freshly ground burgers, made to order, we sat outside watching people and chatting it up about the Freakin Brand, Freakin Pure Water, Freakin Beer, Freakin Universe and the Freakin brand. Douglas is a Freakin smart guy with big plans. We have been working with this through our corporation called Freakin Inc. for years................It started as a free social web site in Asheville. There were other partners and now it is really just Douglas with me as a sounding board supporter. I am not geek oriented or computer savvy like he is so there. Marketing is my thing and I am willing to help as long as i know what we are marketing. Now I am clear on his vision in this moment.

Creating a brand(which we have), marketing it, selling or leasing the trademark and making it all fit into one package is the challenge; one which we are up for. It would allow him to work from home being creative online as he enjoys and still be able to do his designs and artwork while growing our food, raising meat, working on our home and living a clean and old fashioned lifestyle we desire. It was a good conversation and a light bulb moment for me.

We need to find a water bottling company to sell the brand(label applied, supplied by us, to a reusable bottle or jug and it will sell itself via word of mouth a wen site we will provide. Then placing the Freakin Beer label on a local brewery's bottle-jugs is easy and is a shoe-in for towns like Asheville(freak Capital) and A2). Then they sell to distributors, restaurants and venues where we have connections and festivals etc. We get a percentage or a lic. fee and they make profit. When we can show revenue to back up our existing trademark we can sell to a larger "company". The revenues helps us create the Freakin network via Freakin Universe and local Freakin social-community sites (similar to community boards, face book, twitter, my space, blogs etc) city specific or even state, university and country specific. The end result is we donate a percentage back into community organizations which promote innovation, art, health, science, goodness, education, community organic gardening, volunteer ism, philanthropy etc..............That is the end result and redeeming factor in all these years of trying to figure out how to market the Freakin Trademark, network and brand. If Blimpy can do it with no redeeming quality than so can Freakin Universe. Imagine a social network online and otherwise making good things happen in their communities and it not being strictly about making money, although that is what we desire. Capitalism still works for us as long as we give a little back. I can support lupus research, aid for those in need, make gardens for elderly and poor, Douglas can donate artwork to hospitals and public spaces for those who may not afford artwork, help organizations which assist fathers and sons in deepening their relationship, work at the children's hospital and cancer center as he likes etc.. Teach young people skills, build ramps, lifts and devices for handicapped individuals with out costing tax payers. Schools can grow food organically and teach kids about healthy life styles, exercise, fresh air intake, diet, nutrition, respect for themselves, others, the land and how to be self sustainable. Medical costs go down, people connect with each other and the earth while digging in the dirt or pounding nails. We see a world where folks donate time and supplies while a whole network of Freakin Good Deeds procreates. Can you dig it?

Lupus Foundation of America

http://www.lupus.org

Lupus now magazine is a great resource which can be delivered to your home or online. The cost is $25.00 annually and helps raise awareness and funds for lupus patients-research-education and support. The site is filled with helpful information. The foundation has been around since 1975 and has a new administration which I feel will move it forward into an even greater positive and fresh future.

Read the featured article on the lupus now web site on genetics and it's role in lupus. There is no doubt with my family history that genetics play a huge role. You decide.

do not forget the annual Butterfly Walk in Detroit area is August 9th at Woodhaven Community Center. www.amsterlupus.org for further info and printable registration forms or donation forms.

S.L.E. Lupus Foundation

S.L.E. Lupus Foundation - Leading the Fight Against Lupus

challenges and courage to face them

It was brought to my attention by a dear friend that at times it is challenging for her to know how to be a friend to me due to my own challenges with lupus-bones. I totally understand this. I have had friends and family with whom my own lack of understanding or perhaps issues kept me from deepening my relationship or even sustaining it. I have let some drop to the way side because I found their weight too heavy for me to help carry. I know one thing for sure I do not want anyone to be my friend or supporting family member unless they completely want and can do. I know the difficulties of not knowing what to say after a friend has had her breast removed or another a pace maker placed near age 50. I also know how hard it is for me to see my grandparents aging and struggling with the denial which goes along with the end stages of life. My Popa Gross is close to the end but he and my grandma can not let go. So they keep us at a distance and we gratefully accept it because we are helpless to do anything.

I think this is based on fear. Our own fear keeps us from facing illness and death because we all know we will end up there one day. Death is inevitable and so are physical challenges and aging. To avoid this is to walk in denial and dig a whole in the sand. I do it and you do it. We all do. When I volunteered for hospice my first "client" was an 8 year old girl who's mom just died. I was 8 when my mom died. I could not stay with it for too long. It was too close to home and at age 23 I was ill equipped to handle it fully. I ran until later I went back and faced this fear head on. I now know death to be something we should not fear. Pain and suffering is a different story. I am speaking of immortality. This is what we each desire to avoid.

In my own life I can honestly say this is no longer an issue. I have been with people while they go through the dying way too many times and have been present after they have died. I have spent most of my life around sick people, myself included as I faced my own death several times, yet I see myself as a vibrant being. I do not see myself as sick. Once perhaps, but not now. I am a warrior like every other person who survives with an illness or disability. We are the ones who can leap tall buildings and jump mountains.

I encourage you to reach out to an elderly person, sick person, a child who is surviving cancer or someone who finds themselves homeless. There will be more like this in your future and if you face it now you will be that much more prepared for this future. Carpe' Diem.............................Be like the duck who let's the water drip off it's back and continues to move forward. Grace is a gift and also can be something one works hard for. Pray,meditate,be silent and it will come if you really want it in your heart and soul. The spirit can handle anything.

Feeling blessed and know it !!!

Sometimes I feel so blessed that I can not contain myself. I also have down times but not so often. I think when one faces death, loss and disability (and rises above) there is a miracle at hand which deserves attention and acknowledgment. To be alive, loved, full bellied, able to move about, living in own home and enjoying the freedoms we enjoy.................is a grand thing. I wanted to say "I am a lucky human". Then add the good loving of a good man and you have a very happy woman. I do not want to ever be remiss in stating this loud and clear !!!! I guess I was blessed to be born into my family and situation no matter how challenging life has been(mom dyeing,divorce,eating beans and rice for months etc). I have always known I was loved. No matter what; I always knew how blessed I was and felt gratitude for everything(except for a few teenage moments). Now is a good time to remember this. Especially those of us who live in the US. We really do not know or can conceive of the lives others face in countries not so free or rich. Remember this when you complain about the traffic, bad weather, noisy neighbors, snappy check out lady or whatever small issues we turn into tragedies. It could always be worse.

Keeping it in perspective.................Angela

Update...........

Well summer has hit us big time. Yankees are not used to the intense heat and humidity we have experienced this past week. Brown outs in Detroit area make it hard on the sick and elderly. Luckily we only had a few minor power outages due to a storm yesterday. The storm was amazing. I love watching and smelling them roll in as long as it remains safe. The gardens needed it too.

Douglas finished a small "flower" garden along the front walk way which will be so nice once it grows in. Prairie grass will get 4-6 feet tall and I love the way it looks. Foxglove, lavender and delphinium. Less grass to maintain. Next planting is moving a bunch of blue spruce from a patch in the back, all clumped together, to the front as a road barrier. It is our intention they will survive. The last owners planted a bunch of seedling for later transplanting and they have gotten too big. We will have a Christmas tree from it too!!! So our property is coming along slowly. Doug gets a lot done for only being home a few months out of the year. I just do my veggies, herbs and flowers. Peas are coming in and lettuce is on its way out. The squash and beans are starting to flourish and should have more food in two weeks. I am enjoying it all and desire to share so come out and pick !!!!.

Last night we took advantage of another summer music concert on campus at the Power center. It was one heck of a show by Sharon Jones and the Dap Kings. An R and B, soul band. She reminded us of a female James Brown. It was too much fun. Usually the U concerts are tame and civilized (a little too much). This was not your typical show. People were dancing and they had audience participation. It was a powerful and happy show. We left feeling really happy and full of energy. There are more events ongoing on campus through the weekend. Then in July we have art fare. I usually can not handle it due to the sun and walking, but if I get the ramp in place for my power chair I will go with my umbrella. It is a very high end art show and I love seeing all the streets closed and restaurants spread out in the streets. It is one big family friendly party.

My nieces and sister are coming to visit in August and are attending our annual Butterfly Walk supporting lupus research at UM: "The Friends of Amster Lupus Fund" started by two friends who have been affected by lupus who decided to raise awareness and funds for a cure. I have not had a huge family-friend turnout at the walk due to circumstances which are unavoidable. This year it will feel great to have my southern peeps. Don't get me wrong Dad, Doug, Mary and one year My god father Morris and three of my dad's oldest friends, like uncles to me, all came and I was very happy and appreciated their support immensely. It always feels good to have back up for something as important as this. My friend Kitty made buttons and magnets for the event and has created a web site for lupus wearables etc. She is always so good to her friends and community. So this year I am happy to have family here, especially my girls. I never place expectations on people for my own interests.....and......I wish I could be there for my loved ones more because we all have our own "things" going on in life. I do the best I can to support loved ones as we all do. On that note..........do something nice for someone today. Maybe take your elderly neighbors something you grew or baked, volunteer, take your old magazines to a retirement center or simply smile at a stranger. Small things count !!!

recap on last nights concert

Oh My Goodness !!! We had the most enjoyable evening. The opening "band" was "Sneakin Out" from Flint originally. They were a three member band with base, mandolin and a wacky percussionists who looked like Bruno with a Mohawk and wore a red fluffy skirt. Actually he was more sumo wrestler type. He played an old type writer like a piano. Funny and very smart and talented individuals. Then Pink Martini. I have to correct my last entry: There were twelve of them from all over and they are now living and based out Portland Oregon. They have a fourth CD coming out soon with them playing with the Portland Symphony. It should be good. The audience was mostly older folks which was interesting. I think it was a full house. Hill Auditorium is an acoustic heaven for musicians and listeners. We really enjoyed ourselves. We never go out at night. I am usually too tired or ready for horizontal mode early. Plus there is the budget we are on which only includes a little stipend for entertainment. We are quite good at creating our own entertainment. So all in all it was a good concert. I saw a few people who I know but did not scream " Hi!!". Pink Martini played songs from all over the world in the language it was written. The singer had to know Portuguese, Turkish, Spanish, Italian, French, Croatian, English and made up language. It was very fun and imaginative. they would be better heard in an outdoor park or a jazz club with a dance floor.

After a morning in the garden we have more winter squash planted another round of Detroit Red Beets. Douglas is working on the front flower-prairie grass bed. He is doing it really nice. It is summer now and feeling the heat. The garden needs to dry out a bit and de-bug. We have had more bugs which are new to us this year. All organic.

In one hour Dad and Mary will be here for Fathers Day. I am making dinner and we will do a garden walk.

For my other father Lawson................I love and miss you. I know you are in good hands and surrounded by your spawn. Wish we were there. You are a lucky and blessed man.

Butterfly Walk Coming Soon

August 9th will be here before we know it. http://www.amsterlupus.org/. Please mark your calendars and try to make it. it is always fun and rewarding. Bring a hat and sunscreen and for some umbrellas. Two years ago it sprinkled a little. I just came home from the committee meeting and all your envelopes are stamped and ready to be sent. Thar's a personal invitation !!!! It was great seeing old faces I only see a couple times a year. Sweet women who work hard for the cause to raise awareness and funds for Lupus. Hat's off to ya !! Also go the new "Lupus Store" featuring a butterfly design by my dear friend kitty. http://www.cafepress.com/lupusstore

So it is a lovely day after two nights of intense thunder storms and heavy winds. Lots of flooding in the area and my garden is swamped. Too bad. It will have a few days to dry out. We really have enjoyed eating right out of the garden. We are spoiled. It has been slow this year though. The past few years we had much more produce by now but the late frosts and heavy rains have kept things from growing. I also lost seeds during the frost. Douglas is creating a lovely flower-herb and prairie grass bed along the front walk way. It will be so pretty and functional. The road traffic, while not heavy, can be loud. This should offer a little buffer and privacy so we can sit on the front porch peacefully. I love how in the old days, maybe some people still do, people sat on their front porch in the evenings when it was cooling down and talked to one another. My grandmother fed the squirrels out of her hand. This was the old fashioned neighborhood watch program.....You know what I mean. My grandparents knew every one's business and watched over us kids while we were playing. Do kids still play outside? TVs, computers, computer games and cell phones seem to be more enticing to our youth than walking through the woods, building forts, playing street hockey and all the things we did back in the day. We always had lemonade stands and bake sales. That was our ice cream truck money. I can still hear the musical sound of Harold's ice cream truck, like carousel music. We could hear him blocks away and went running for the change jar or my grandpa would empty the change from his pockets and buy us all ice cream. He was a hit with the kids for sure.

Tonight we are going to see Pink Martini playing at Hill Auditorium on campus.They are amazing. I have never seen them in person but I hear they put on quite a show. They are from all over the world but based out of Paris I think. Orchestral music with a Latin flare and dramatic yet humorous. This is one of the perks of living in a college town. There are always concerts and events happening especially in the summer. I have not been able to take advantage of most events due to my health and legs. This is a treat for sure. Check them out online if you like fun music.

OK this is where the topic turns to poop. Seriously. Yes stool. Not the raccoon poop either because we now seem to be raccoon free. They must have seen Doug's big trap and decided to split. Good !!!! I am talking about that lovely test where you have to collect specimens for the lab to make sure all the plumbing is working(so to speak). I started giggly wondering if the UPS guy will know what he is picking up to deliver? Can you imagine? I am twisted I know but really. Who ever thought of such a test? I don't mind doing urine samples but the other is slightly disturbing. Funny though. It is a thorough way to see how one is digesting and if there are any bacteria, parasites,cancers or viruses which need addressing with out swallowing a camera. They can see if there is blood or other issues as well. The up side is that this test is only needed every ten years or so. That's not a lab I would care to work for. OK I will stop. For those of you who know mine and Doug's humor you are smiling because there is an inside joke I will save for later.
But you should get one of these tests after the age of 40 and especially if you have a chronic or inflammatory disease. It's really easy. Do it for those you love. Then you can tell them you have your sh-- together. Hahahahaha..............................The end.

back on earth

Douglas is home after a long period away from home "Thank God". His project in NC was very successful and stunning. A multi-plex movie theater and bar-food area with mixed media and event space turned great. The opening was wonderful with people from the past and present in Asheville who have supported Madaras Design and Douglas. It was heart warming. The client and his crew flew in from all over and were wonderful. Heritage construction did an amazing job as usual. Our friends Casey and Mary (Heritage) are the best people and talented beyond the normal GC company. Their personal touch goes a long way. Their guest house and hospitality was outstanding. We love being with them. Our friend Constance as always provided us and especially Douglas with so much support and home cooking. She rocks as usual sweet C. I miss our friends for sure !!! Our Asheville crew is incredibly talented and dedicated and still are working on finishing the project which will have a long finish. Mucho Gracias !!! There are still two more theaters within the grand multiplex which need renovating. So we shall see. Hats off to everyone !! The architects from Texas equally amazing !! and client Bill and his wife Susan gracious and devoted to this vision of a multi use theater/preforming arts center and in providing an artistic space for film and other performance while utilizing local talent. I applaud their vision. Check out "Magnolia Films". All you art film junkies know the name. This is who created the vision and made it happen. If you live in Asheville support Carolina Theaters on Hendersonville Rd. South Hwy 25. It is worth the visit as an art space and as an entertainment space. Plus local brews and wine. Artists are welcomed to present their work for future shows in the mezzanine. Contact me for info. Also have your events and film club meetings there. Beer and wine with Ashveille Pizza and local breweries!!! More to come for sure. I can direct you of you wish.

I am so happy with our garden and flower beds. The rain and colder temps have stumped some plants but others are thriving. We have been fed well, especially by French radishes: mmmm. The lake is up by a foot from last year and it is quite perfect !! We spent the past week between the lake and home. Doug's finally feeling rested after 19 hour work days 7 days a week. He is not used to doing that labor intensive work for such long hours away from home so he is happy to be in his space and resting while working on many future projects and finishing the current one. I also have a "Honey Do" list out of control. He will be on the road for a while but I will attempt to join him when possible in between surgeries and taking care of the home from afar. It is a lot, and I love it, but I would love it more if he could be home full time, which we are currently trying to establish.

Next Monday and Tuesday mornings we are going to our neighbors farm to let out all their animals(chickens, turkeys and goats) for their day in their outdoor spaces. We just let them out and feed-water and get a feel for what it is like to raise animals. They have a much larger property devoted to farming than we would. They have the best eggs I have ever had and we are trading for eggs-"gold"!!! So that will be fun. Sunday Dadio is coming over for father's day dinner with Mary. Eggplant Parmesan was his request as I make it baked with no cheese(vegan). It is good !!! Plus a nice mixed veggie-green salad from the garden and fresh baked bread. I may even do some grilled veggies???? or appeteezers.

We may also attempt to visit my Popa Gross who today turned 93? What a strong Prussian. He is amazing. He was so close to death the last year and now he is having a re-awakening. Still bed bound but he is eating a little and the home nurse-pt team is taking good care of he and my grandma. They just have to be home bound and it demands a lot of energy. My aunt lives with them and handles the errands etc. I hope we can visit but they may be too pooped. Douglas' father passed away in the late 80's. He was a fun and gregarious man whom our mom loved very much. The whole family misses Bob at this time. "Here's to you Popa Bob!"

So I just wanted to give an update. August 9th is our annual Butterfly walk in Woodhaven close to the airport. I hope you can join us or donate for the cure for lupus. It is a wonderful program and we are doing great things at UM for lupus patients in the present and paving a brighter future for those to come. We are survivors of the highest order !!!! http://www.lupusadvocacy.org/ and http://www.amsetrlupus.org/. Bring lots of friends it is a great day and you get a pancake breakfast.

Lots of love
Angela

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 !!!