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Mesenchymal Stem Cells to Treat Lupus (SLE) - My Personal Journey 1 Feb 2022, 6:46 pm

As many of you know I have been exploring Stem cells as a treatment, even cure, for Lupus over many years. I firmly believe that “rebooting” the immune system is what is needed to stop the body from attacking itself.

I would not be eligible to use anybody else’s stem cells as my immune system would reject them. The only option would be an autologous (stem cells from my own body) approach. In the early days the procedure was “stem cell transplant” and involved completely wiping out the immune system with chemo. The challenge with that approach, in a Lupus patient, is that organs that are already damaged (lungs, kidneys, heart) would not survive this phase of the procedure. In early trials many patients died and never made it to phase two where their own stem cells are infused back into the body to reboot the immune system.

Several years ago my oncologist, with MD Anderson, suggested I visit with their team to explore options for a transplant. At that time, they were only doing the procedure I discussed above and based on my general health I was not a candidate. The procedure would be too risky and I would not even be approved for Myeloma. However, the doctor recommended I continue to explore Mesenchymal Stem Cells (MSC’s) which were just becoming a thing. MD Anderson was not offering this.

As we are learning more about MSC’s, in trials, we are seeing amazing things. People with MS get out of wheelchairs; a doctor I met, who is an orthopedic surgeon, avoided his own surgery by going to Japan to have the procedure and got up out of a wheelchair – it even improved his vision over 300%. You see the beneficial stem cells go everywhere in the body, not just your personal target and can benefit the patient beyond the intended treatment. Very powerful and promising. There is evidence of this procedure being highly beneficial in patients with Lupus and other autoimmune diseases.

Mesenchymal stem Cells are multipotent adult stem cells that are present in multiple tissues, including umbilical cord, bone marrow and fat tissue. They can be harvested directly from your own fat. MSCs are among the most frequently used cell type for regenerative medicine. A large number of studies have shown the beneficial effects of MSC-based therapies to treat different diseases, including neurological disorders, cardiac ischemia, diabetes, and bone and cartilage diseases. For example, injected directly into a joint that is damaged by osteoarthritis. Currently, the only stem cell products that are FDA-approved for use in the United States consist of blood-forming stem cells (also known as hematopoietic progenitor cells) that are derived from umbilical cord blood. This is where the challenge sits.

In a procedure, that could potentially be beneficial to people like me, it works like this: Stem cells are extracted from your own fat and then nurtured in the lab. They are then infused back into the body through a vein. The FDA claims that because the stem cell tissues are manipulated, before being injected back into patients, they fall under the category of biologic medications - then pharma gets involved and so on. This is a US problem.

I still firmly believe that this treatment could be beneficial to me. However, without FDA approval, it is only offered out of pocket and typically involves travel to countries like Panama, Mexico etc. where you go to have the stem cells reinfused. Several years ago I was accepted into the Panama program however it seemed very sketchy. They were looking for a significant investment and not willing to answer detailed questions or provide references. I was hoping to wait until it was available in the US. Texas has been a hub of interest having the largest medical center in the world. As such, several programs have emerged offering trials and out-of-pocket paid options which include proprietary technologies for harvesting, feeding, growing the adipose MSC’s. I have been to visit a local lab that harvests the cells and I have also been to visit several doctors.

Dr. Stanley Jones, the Doctor who went to Japan for his own stem cell treatment, has approved me for MSC treatment. There is no coverage for the procedure. The extraction is approximately $6,500 and I would need to go to Mexico for the infusion which is approximately $13,000 plus travel costs. There is no guarantee or promise of improvement but he believes it would surely help and can’t hurt. We have no idea how many times I would need to do this. I was very impressed with Dr. Jones. I still believe in the power of stem cells. I have much to consider.

I am writing this blog page to ensure that future generations of Lupus patients stay on top of this. I am hopeful that one day stem cell treatment will be available to all Lupus patients. However, this could be many years away in the US.

A Tale of Lemons, Love & Limoncello 20 Apr 2021, 4:46 pm

It all started in Italy – my love of lemons and all things lemons – spending birthdays in Southern Italy with my beloved friend Marylou and her family. We were childhood friends and she moved to Italy mid high school. It was so painful for all of us.

Marylou’s family would embrace me in such a way that I felt like a celebrity on my annual Birthday treks to Italy. Her father-in-law had orchards of lemons and taught me how to make the limoncello. The irony is he doesn’t speak a word of English and I don’t speak a word of Italian. However, we communicated with smiles, gestures and lots of laughs. His embrace was as warm as the limoncello going down.

As soon as we moved to Texas, where citrus will grow, I was on a mission to grow my own lemons in order to make the limoncello. It took many years to find the right place to plant the trees and allow them to mature, to harvest enough lemons for even one batch and so on. Through this process I learned patience and waiting can really pay off. I learned that not everything can happen in our time but sometimes it’s God’s time and all we can do is be patient. I learned that every phase of the process was special. The blooms would bring the sweet smell of lemon to my whole backyard. The bees that would pollinate intrigued me. Being able to pick just one lemon from my own tree felt wonderful.

After several years our harvests became bountiful and we shared our lemons with neighbors, vendors and just about anyone who wanted some. If someone told us they enjoyed lemons we would invite them to pick as much as they wanted and there were always plenty left over. Our lemons made people happy. I would make lemon squares for new neighbors, our doggie daycare staff, my doctors and friends.

Then came the limoncello. The first batch brought me back to Southern Italy and all the love I felt when I was there. We shared with friends who embraced not only the wonderful liquer but the process of making limoncello. Every year I would teach a few more friends how to make limoncello and they would give it to their friends. In subsequent years they would return to pick the lemons. This year, when my granddaughter was born, friends came and picked baskets of lemons and made the limoncello for me so I wouldn’t miss the first harvest. Limoncello isn’t about drinking it’s about love, sharing and connecting with people. Our lemon trees provided us the opportunity to share our bounty with others and I just loved that feeling.

For the moment our lemon trees are bare as a result of the recent rare freeze here in Texas. My heart Is sad but I am hopeful that one day the smell of lemon blossoms will return to my sanctuary garden. There is so much in life we have very little control over. I am hopeful that at the very least there is something I will learn as I try to temper my momentary sadness.

Life isn’t about waiting for the storm to pass it’s about learning how to dance in the rain.

Prednisone – the Poison that Keeps Lupus Patients Alive 6 Jan 2021, 11:49 am

When I am having a Lupus(SLE) flare up my body’s own autoimmune system is attacking itself. It starts with joints/joint pain, then starts attacking organs, blood and tissue. As a result of these Lupus flare-ups I only have 67% lung capacity, damaged intestines, damaged liver, damaged kidneys and so on. When they occur there is only one drug that can stop it. This drug is Prednisone.

When I am having a flare-up I am given very large doses of Prednisone via IV. I also take Prednisone every day of my life and that will never change. There is no choice if I don’t take the Prednisone my body will continue to try to kill me. Eventually when I think the flare up is under control I start to taper the drug and that is when you see if you are getting better or if you need to keep taking more. Let me try to explain how this works.

Last weekend I tried to reduce my dose. This is a slow process where you go up and down from a higher dose one day to a lower dose the next so your body can adjust. Overnight I had trouble breathing. I was sleeping. My dog, Gilby, had to wake me up in the middle of the night. My oxygen saturation was in the 80’s (normal is 95 to 100). I had to do a breathing treatment with a nebulizer and put on some oxygen for a while to get stable. I also had to take MORE prednisone. The taper stops and I stay on the higher dose. If I chose not to take the prednisone my lungs would continue to be attacked potentially causing more permanent lung damage. This process can go on for months until my body stops doing this to me or it may never stop.

The side effects of long-term prednisone use are extreme and they include but are not limited to diabetes, osteoporosis, extreme sweating, significant weight gain and water retention, high blood pressure, glaucoma, fractures, congestive heart failure….and so on. I am an insulin dependent diabetic now due to long term steroid use. I have had bones in my ribs and spine break. I have had to have cement put in my spine where some of those bones have broken. I have had many teeth break and have a high risk of having a jaw fracture.

The sad reality, for Lupus patients, is that there is NO OTHER option. Prednisone keeps us alive and stops the attack. You must take the prednisone because without it you will die. We must raise awareness about Lupus. We must find better drugs that don’t have these harshest of side effects.

There has only been one drug developed, to target Lupus, in over 60 years. That drug helps minimize flare ups and reduce prednisone dependency. However, it is not a silver bullet, you will still have flare ups and when you do your only option is high dose prednisone. The goal of every Lupus patient is to minimize steroid use, however, without better options we are all steroid dependent. Please support Lupus Awareness and Research.

Please consider a donation to my annual Lupus fundraiser: https://bit.ly/3aS9jOs

After every storm comes a rainbow 30 Oct 2020, 4:38 pm

One of the most important things I have learned in life is that following every storm there comes a rainbow. No matter how difficult the storm is, no matter how much damage it does there is always a rainbow when we hunker down and get through it. We may be somewhat broken, trees may have fallen our life may be changed forever but there always is that ray of light, of hope, of a future that makes the storm worth weathering.

When I was initially diagnosed with Lupus I was in denial for many years. I thought I would beat it if I just refused to acknowledge it. I went about life, as best I could, until I literally could not breath. Once the Lupus started to damage my organs, I had to face the reality of a new normal. I was convinced I would never see my son get married and certainly would never meet a grandchild. When Rick and Mary got married, I only had 67% lung capacity. This damage doesn’t get better it only gets worse. I was on supplemental oxygen daily as I learned to breathe again and what the limits were. Their wedding day was the happiest day of my life, knowing that Rick would have someone forever. Then comes a rainbow.

I have my “bucket list” of things I would like to see for my children before Lupus wins. The most important is to know that Rick has someone who loves him, as much as I do, and then Logan was born. They say there is no joy like the joy of being a grandparent. This is so very true. Rick says Logan is a “magical” boy and watching them love each other has given me peace. This little boy has brought so much Joy to our entire family. Yet, another rainbow. My mom says the only time my dad smiles or laughs anymore is when he sees Logan on Facetime or in pictures. And another rainbow.

For many of us 2020 could be called “the worst year of my life.” However, for me 2019 was the start of my “worst” season. My Lupus was under reasonable control when I automagically found out I was on Medicare. We had passed the window for me to join Doug’s plan. The Medicare options, available to people like me on disability, are critically limited. I faced a year of health turmoil. Which culminated in ultimately having sepsis. However, I fought, and made it to 2020. Another rainbow.

In 2020 COVID took away my visits to see Logan, our Pet Therapy, most of my volunteer work. However, my health continued to improve. I spent 9 months worried about getting COVID and never being able to meet my granddaughter. After what felt like forever, a beautiful angel arrived – her name is Ripley Rain. The RAINbow.

Sorry....there is NO cure for Lupus! 15 Jun 2020, 3:55 pm

Let’s talk very candidly and direct about Lupus. My fellow warrior sisters and brothers first YOU DID NOTHING TO CAUSE YOUR LUPUS! It is NOT what you eat, it is not what you don’t eat, it is not because you don’t exercise, it is not because you don’t drink olive oil daily, it is not because you carry extra weight, it is not because you don’t take supplements. It is 100% out of your control! Got that. I won’t disagree that eating healthy and avoiding processed foods and refined sugar are not helpful to “any” human being but none of this has “caused” or will “cure” you. If it were really that simple we would all surely choose the lifestyle changes over the toxic treatments, strokes, heart attacks, pain, etc. we live with daily.

I want to share what I have found. I have had Lupus for 28 years. I have been to nearly every expert in this country and beyond. Yes, wise ass, I had a lot of time and money before I gave up a lucrative career. I was determined to find myself a cure, treatment, remission before I was going to sign up for long term disability. I ran around the US with 67% lung capacity and a portable oxygen concentrated talking to every “expert” in the field from Johns Hopkins to Cedars Sinai, to spiritual healers, Eastern medicine experts and so on. I was willing to try just about anything. There surely was some good science out there that helped me to determine that I was not going to be cured or get better not then not ever. There is no cure for Lupus.

I just want to scream when I hear someone say “people just don’t want to take the time to prepare good meals….if you only took these supplements…..if you lost weight…….if you tried this diet or that….read this book….take this magic potion…..so and so had all these autoimmune diseases and cured it with XYZ.” However, I determined if so many people had so much to say I wanted to understand why. Why would someone accuse me of causing my own Lupus or autoimmune disease. Certainly, if I could reverse this I would do it and I surely tried. I tried so many diets I ended up with low potassium fighting for my life. Interesting how my cousins all have Lupus and our kids all have UC and we must all be eating the wrong things. Big coincidence? There is surely a genetic component.

Here is what I have learned. Symptoms of food sensitivities and Lupus are fairly similar. It is not uncommon to have Lupus and Food sensitivities. However, everyone with Lupus is NOT food sensitive. Lupus is difficult to diagnose and on average takes 6 years according to the Lupus Foundation of America. Symptomatic people often believe they have Lupus or they are even told by a medical professional they do. While people wait for a proper diagnosis they may have Lupus symptoms. If they have food sensitivities and change their diet their symptoms will surely go away. Maybe they do and maybe they don’t it’s really not important. However, if they are cured, I can tell you beyond a shadow of a doubt they did NOT have Lupus. There is NO CURE for Lupus. No diet, no exercise, no magic potion. If you are cured or “go into remission” you don’t have Lupus – CONGRATULATIONS! Please don’t share your “cure” with the Lupus community because you can’t be of help. You may mean well and many of you do but if your Lupus was “cured” you never had Lupus.

I started to asked these Miracle Patients about their “Lupus.” Every single person who chose to post about their “cure” I wanted to get up close and personal with. How were you diagnosed? What is and was your ANA? What is your SLEDAI score? When did the Lupus start? What are your symptoms? What treatments is insurance paying for? Have you had a stroke, heart attack, organ damage? Now I am NOT a Rheumatologist but I can surely tell you that I have not met one of these people who could convince me that they ever had Lupus or a solid diagnosis. I would get “well not everyone with Lupus has a positive ANA” or “they can’t find anything else so they told me I had Lupus.”

Please don’t leverage Lupus forums to take advantage of those suffering with an incurable illness. If you have found something that “helps” please share. Maybe Yoga helps your joint pain. Maybe not drinking helps you sleep better, etc. However, the moment you say your Lupus was “cured” you have compromised your credibility in the eyes of those of us who are long time warriors. Moreover you are setting false hope for those who are newly diagnosed who don’t need to hear that Lupus is their own fault. End of Rant.

Thoughts and ramblings from a Lupus Patient during the COVID-19 Outbreak 14 Apr 2020, 4:51 am

While my “normal” life with Lupus really hasn’t changed that much, due to the quarantine and Isolation, I am finding that I am unable to just enjoy my home, my garden, my morning coffee, my dogs, the breezes in the palm trees in my backyard, my lemons and all the other things that were so important before COVID-19. In some ways I want to say to everybody else “welcome to my world” but I am allowing my world to change and it’s consuming me.

I had come to a place where I was very happy with being alone, a lot of the time, due to ongoing concerns about things like the common cold, flu, germs etc. which for people like me can turn into long hospital stays, organ damage and other unpredictable consequences. I created my own little hermit paradise that suited me well. Sure, I miss the occasional lunch with a friend, a trip for a manicure or blow out but mostly I miss my kids and my grandson.

I had gotten pretty good at travelling once a month. Resting prior, taking an easy trip, relaxing when I got there and spending a week in bed when I got home. That’s the only critical piece that’s really missing now. This is a void I have no way to fill. I am not Marie Kondo-ing. I am certainly not losing any weight. I am not gardening. I am not getting to all the projects I never have time to do. I am not knitting. I am not really doing anything, I am not being productive, I am NOT motivated to do anything I am just trying to determine the best course of action in light of my unique situation.

Those of us with Lupus are in that 20% range of people very susceptible to poor outcomes from this virus. Having only 67% lung capacity, diabetes, high blood pressure, vasculitis, prior stroke and walking around with low O2 saturation I am trying to determine if COVID is going to get me or if we can ultimately blame Lupus when I can’t get any more Hydroxychloriquine. It is hard to focus.

What I have been doing is trying to get signatures so my life saving medication isn’t hoarded and left in stockpiles to expire while my lung damage progresses to a point where I need oxygen full-time or have another stroke or worse. Pulling out and dusting off a sewing machine that I barely know how to use to make masks. This new focus might say a lot about where I am at. My life has very little purpose or quality right now.

Will I be a prisoner, forever, due to COVID? Should I throw caution to the wind and live my life to the fullest and focus on quality not quantity. Should I just get on a plane and go see the kids, like I did for Thanksgiving and then just deal with the consequences? What is really important?

"Productivity is being able to do things that you were never able to do before." Franz Kafka 24 Aug 2019, 3:20 am

Image may contain: dog, tree, plant, grass, outdoor and nature

I haven’t blogged in a while as life has been busy - in a good way. However, this week it came upon me how grateful I am for the “projects” that have come into my life. There is nothing worse than having nothing that feels meaningful to focus on. It is so important to remain creative and contribute. It is more important to always be learning and to keep your mind sharp. When you are chronically ill it can be difficult to find meaningful focus as the unpredictability of the illness can get in the way. Not being able to be upright all day, not being able to breath, not being able to commit blocks of time, ending up in endless doctor’s appointment and hospital stays are all obstacles. There is nothing worse than feeling like you don’t contribute and are nonproductive.

My dogs, in general, keep me going. Every day there is a reason to get out of the house and go to the park to walk or just visit. Rain/Shine/Heat whatever I must go out. Our Pet Therapy work has become a constant source of fulfillment for me and the girls. It keeps me grounded and helps me realize I can make a difference in someone else’s world if only for a few minutes. It brings warmth to our World and gives us something to look forward to that truly matters to those we serve.

I have picked up a new skill set based on my work with the dogs, rescue organizations and Pet Therapy Groups. I have learned to develop web sites for these groups. First, working with a developer and now on my own. I donate my time, which often is when I can’t sleep in the middle of the night, or when I am wanting to find focus after an infusion to quell the nausea. It is so rewarding to have created something that will make a difference in their operations and allow more time for the business at hand.

I have renewed my focus on the Lupus Foundation. I will be meeting with Senator John Cornyn staff the first week in September. I am chasing other members of the house and Senate. Donna has “finally” retired from IBM and we will together continue advocacy and fundraising for the Lupus Foundation. Those of you who have worked with our dear friend know I better fasten my seatbelt. When she sets out to do something Fireworks start to explode. Exciting things ahead.

Advocacy on Capitol Hill March 3-5, 2019 7 Mar 2019, 2:17 pm

2019 National Lupus Advocacy Summit - Turning Capitol Hill Purple

The first day of the Summit we heard from several doctors, researchers, drug companies about what is going on in research. Of particular interest was the work of Dr. Gary Gilkerson who spoke about the trials he is presently doing with Mesenchymel Stem Cell. This type stem cell transplant does not require the same immune system wipe-out like the trials I have looked at in the past, which I did not qualify for due to this high- risk process. It will take some time before these new type treatments are generally available but the promise is on the horizon.

There is NO cure for Lupus and there was much talk about the harsh, harmful side effects of the treatments available today. It is critical to find treatments that reduce the use of steroids and other standards which in some cases cause as much harm as they do good. Further there was a focus on how long it takes to get approvals for new medications and to get the appropriate populations into the trials. Cost and availability of treatment were highlighted as specific challenges.

Our goal “on the Hill” was research funding. In each meeting the Lupus Foundation chapters introduced the organization and the work that is being doing. A few interesting statistics 120,000 people in Texas have Lupus. An estimated 1.5 Americans have Lupus. Despite the widespread prevalence of lupus, research on the disease has remained underfunded, relative to its scope and devastation. Only one drug has ever been developed specifically to treat Lupus. Awareness about lupus among Americans of all ages is extremely low, with 61% of Americans reporting they have never heard of Lupus.

We met with staffers from the house and Senate and our specific asks were for their commitments to appropriations specific to Lupus funding. Two of them had tears in their eyes hearing our patient stories. Several committed to considering and even voting for research dollars for a national registry, clinical trials for minority populations, a specific research program by the DOD focused on veterans returning with Lupus and a large NIH grant for Lupus research.

I am humbled, honored and grateful to have had the opportunity to participate in advocacy in such a meaningful way. Donna Vazquez and I plan to expand our efforts on behalf of Lupus awareness and funding this year. Living in the moment……and every moment special.

Purpose...the part of the Journey you own 15 Feb 2019, 7:45 pm

Life’s lessons can be so painful. I have always felt if we can hold on to that which we can control it makes all the difference. My life has been reduced to my Lupus journey and I have been forced to look deep inside to find “anything” I control anymore. What I have found is that I can suffer in silence or I can be a voice in a fight to find a cure. If not a cure possibly make the journey easier for someone else. I can also use the time I have to give back and truly make a difference. A few moments of joy for a resident in a nursing home who can savor the affection of one of my dogs is so meaningful. More than I could ever have imagined. It isn’t always easy and sometimes it doesn’t even make sense, however it does bring pure purpose.

Life isn’t fair to any of us. I appreciate the struggles my friends endure as they keep me grounded and help me realize indeed it could always be worse. I can look back on my younger years and appreciate what I thought was a struggle and recognize now it was all part of learning and growing.

It is easy to forget just how wonderful life can be sometimes. When I can make my mind slow down and just enjoy the moment life is so special. If I can live in the moment, this moment, life is so much sweeter. Link to Donate for 2020: https://fundraisers.hakuapp.com/teams/are-we-there-yetz

Becoming Cici 3 Jun 2018, 3:56 pm

When I was younger I never thought about life the way I do now. Things like unconditional love were taken for granted. As I moved into my 40’s then 50’s things that were never top of mind all of a sudden became important. The reality of what my son has brought to my life and what really matters became paramount. That unconditional love that can only be shared in a parent/child relationship which in and of itself is not guaranteed. I have been so blessed to have this kind of relationship with Rick as we endured life together and in essence grew up together. In the worst moments of my life he was there to love and support me, unconditionally. Unconditional love should never be taken for granted. The inevitability of my disease and unpredictable impact combined with the love for my son became the most important thing in my life.

When Rick and Mary married 3 years ago, after a long-term relationship, I believed that they may be getting married to insure I would be here for the wedding. While in reality it probably wasn’t about me at all I felt that way. I could not wait for them to have a child to love. When I learned Mary was pregnant I was thrilled beyond belief. Because I know my son will be the “ultimate” daddy. He has waited a long time for this and has all the qualities that make a true daddy he is warm, affectionate, patient, kind and understands what it takes to be successful at everything he does. He has learned that life does not come to those who wait and that hard work pays off. He has the utmost integrity and will raise his son the same.

Before the sun came up, on May 31, Logan Riggs came into the world. He made a grand entrance, indeed, and I am sure this is sign of things to come. Logan Riggs you are destined to be a great man. Your birth has officially completed the cycle that was so important to me. I can rest now knowing that Rick now has someone to love him as much as he has always loved me. This is what is important. Living in the moment and every moment special.

Bringing joy in a Moment 11 May 2018, 12:38 am

Early this year I got a call from a gentleman in Washington DC. I ignored his calls for days until he finally left a message. He had tracked me down through the Pet Therapy network and was looking for a dog visit for his dad who was in a very nice local assisted living facility. Typically, we can’t take individual requests like this, however, I could just hear the urgency in his voice. Several of the employees from another facility we visit had recently transferred to the same place his dad was so I figured I should at least go check it out. Something had pulled at my heartstrings and it wasn’t optional.

We met Doc on a cold winter day and he was just thrilled to meet the dogs. His wife sat quietly on the sofa in his unit. He talked about wanting to be a veterinarian, in his youth, and how his life had always involved animals. He was a kind, gentle man and my dogs took to him immediately putting their paws up on him, kissing his face and just sitting with their chins on his knees while he stroked them.

The facility had a very nice memory care facility and their residents were excited to visit with the dogs. I didn’t plan to come back, quickly, but somehow I knew we would be back. The following week while visiting another facility, with a friend and her dog, she suggested we go back together. When we arrived the lovely lady who had been there, on the coach the week before, was not in sight but Doc was still excited to see the girls. We visited with him for a while and then headed over to memory care. While we were in transit, one of the staff members stopped us to tell me Doc had just lost his wife and we could not have come at a better time. My heart sank but I knew, even if only for a few minutes, we had brought some joy that day. We had come when he needed us and that made a difference. We sat with him again before we left and promised to return. We continued to visit for several months.

Today was a tough one. We had not been out to see Doc for a few weeks and the last two times we saw him he was not as strong as he had been. When we arrived I told the receptionist we were there to see Doc and headed down to his room quickly before she could say anything. When we got to his unit someone else’s name was on the door. Our memory care sweetheart was outside the room waiting with the news. This is not a feeling I can put into words. There are many moments when we see a bed stripped or a person “missing” from their room and a pain comes to my heart. Sometimes they have been hospitalized or moved to another part of the facility and this is always my hope. But this was different. Doc had gone home to the rainbow bridge of animals who would usher him to the other side.

These moments can make me question why I do this. I must constantly focus on the smile the first day we brought the dogs, the sincere continual words of gratitude, the pure appreciation and the feeling of knowing we made a difference if only for a “moment” in someone else’s joy. This is what life is about this is living.

Living in the moment and every moment special…………………………………..

Running for your Life 29 Apr 2018, 6:10 pm

Running for Your Life

Cheryl Yetz, a two-time Boston marathoner and fundraiser, finds her purpose in life when her running career is cut short by Lupus. “I never thought I would wake up sick one day and never get better. I also never thought I could run a Marathon or use my love of running to fundraise to get us one step closer to finding a cure for lupus.”

The whole story seems unbelievable when I write it down and read it back aloud. I only know it’s true
because I lived it. My story begins running the 2002 Boston Marathon. I chose to run that particular race
in order to raise money for the American Liver Foundation.

I was diagnosed with Stage 3 liver fibrosis. I ran Boston in order to benefit this foundation. At the time,
my doctors hadn’t yet discovered that Lupus had actually caused the damage. At 38-years- old, I ran a
respectable first marathon in 4:10. I proved to myself that I could conquer whatever was going on with
my body while raising money for a cause that was near and dear to my heart. That year we raised over
$7,000—most of which came from work colleagues who knew my story. The first words out of mouth as
I crossed the finish line were, “I’m not supposed to be able to do this.”

This wasn’t my first battle with Lupus. I had a stroke at age 28, and had fought illness most of
my life which included life-threatening pneumonia, infections, pericarditis, vasculitis, bowel
obstructions, diminished lung capacity, diabetes and immune system failures finally leading up
to a Systemic Lupus Erythematosus (SLE) diagnosis. Despite the seemingly endless challenges,
my strong and positive mental attitude drove a successful career in the technology world. I was
training to run my second Boston Marathon when I moved to Houston in 2003. I was once
again running for the Liver Foundation to prove to myself that the first one wasn’t just luck and
I could do this again for myself and my favorite charity. My second Marathon was not the
accomplishment my first had been. The fundraising effort was outstanding, but it took me an
hour longer to finish. At the time, I was on a powerful chemo drug, Lupron, to control bleeding
and as a result was vomiting during most of my training runs. It was the first awakening that I
was not in control and perhaps I wasn’t supposed to be able to do this after all.

One of the first people I met when I moved to Houston to pursue my career was a colleague
named Mike Kiefer. From the beginning, Mike supported me when I was running and took care
of the running/walking when I was unable to. Fast forward to 2014; 12 years after my very first
marathon. I spent much of that year in the hospital battling Lupus – one attack after another.
Meanwhile, my dear friend Mike and his wife, Tracy Kiefer, started Team Are we there Yetz?
They completely surprised me by organizing and walking the first Lupus race for the team and
raised $3,000. This is when I first realized that others racing could raise awareness and critical
funds for Lupus awareness and shine a bright light in the midst of my own suffering. I wasn’t
supposed to run, but I was supposed to be able to raise money! My network of colleagues
came through in ways I could have never imagined.

In 2015, Lupus ran me right out of my full-time work career. I was struggling to find purpose when I got
a call from a young woman I had mentored at IBM, Laura Russell. She had seen an advertisement about
the Lupus Foundation of America being part of the Run for A Reason in the 2016 Houston Chevron
Marathon and wanted to organize a team to run and fundraise for Lupus. I was completely
overwhelmed. My nephew Brad, also an IBM employee, and Laura’s best friend, Blair Felter, also joined
the 13.1 running team. Together with Laura’s Mom, Donna Vazquez (also a colleague and best friend
from IBM) we raised over $7,800 for the January 2016 race, $9,580 in 2017 and $14,009 in 2018.
Over the last 3 years, these young runners of Team Are We there Yetz have run the Houston Chevron
Half Marathon on behalf of the Lupus Foundation of America-Texas Gulf Coast Chapter and fundraised
over $31,389 for Lupus research and local programs.

I am no longer supposed to run marathons. My greater purpose is to leverage able-bodied runners to
help raise critical research dollars and awareness for Lupus. It’s even more unbelievable that I can make
just as much of an impact in this manner. The love and support of my friends, family, and colleagues
have made this all possible. I can’t wait until the day when I learn that a cure has been found.

This is not a specific blog entry. It is a reprint of an article Team "are we there Yetz" wrote for Texas Runner Magazine April, 2018

Blog: www.cherylyetz.com

Letters to Logan 19 Mar 2018, 5:13 pm

My precious grand baby is due soon and my son has asked all of us to write a "Letter to Logan" so one day he may share them with him so he understands just how much he is loved even before he was born..Rick is already a better parent than me. Below is my letter to my love.....

I was young when I had your dad and quite frankly I didn’t have a clue what to do with him. I just knew from the moment he was born he had my heart and would be the single best thing that ever happened to me. Rick and I grew up together and my approach to parenting wasn’t always based on best parenting techniques. I tried my best because I loved him so much but mothering was hardly my gift. I just didn’t always understand how to translate my love for him into action but he understood and we endeavored to a wonderful relationship. He could forgive me my shortcomings and I was so proud of him growing into the person he was destined to be. While we didn’t always agree on what was best for him he always took my recommendations to deep consideration and I believe he made the right moves at every turn.

I always told Rick I was doing my part and he had to do his. I went to night school, ran a successful consulting company and worked multiple jobs while he hit the books and worked tirelessly at school to make me happy. A few special moments come to mind. I would read Newspapers to him in his high chair because I didn’t see any reason why it mattered “what” I read to him, I would always talk "adult" talk to him because I saw no reason to coddle, he skipped high school and took a limousine to Boston University to attend college when he was 15 which we affectionately called the think tank. He didn’t need to go to high school, he was smart enough; neither of us thought any of this was odd.

I turned around one day my little boy, who worked so hard, had become a man. I was dropping him off in Los Angeles, a city we knew NOTHING about, to do find an internship. I somehow knew this was the right thing for him but I also knew, sadly, he would never come home. He was 18, would graduate from Boston University at 19 and was living on his own in Los Angeles writing for some of the biggest names in the entertainment industry. Rick was chasing down his own jobs and even working for free when it made sense. One day while reading the New York Times on a plane I saw his name on a movie quote. My heart danced with joy. As we have both grown and matured we look back on much of the journey and have a good laugh. While there was plenty of laughter, there were tears and tough times and good times and we got through them together.

Unfortunately, Rick spent much of his younger child hood watching me struggle with illness and as an adult he has taken over the role of caretaker in many ways when we have needed him; flying back and forth from Los Angeles to Houston pretty regularly, Rick has probably logged more miles than a pilot, but I have learned to cherish these visits and allow him to take care of me.

Rick now has Mary who has become an integral part of our family. The daughter I never had. She helps me with fashion, makeup, hair & skin. Has a world of advice about all the things I need to know about what’s going on in the World with women’s issues. We look forward to our little spa getaways, cooking together and fun holiday traditions. She is pure joy to be around and her heart is as big as Ricks. From the moment I met Mommy I really liked her. She was sweet, intelligent, obviously smitten with Rick, polite and a quiet little beauty. How blessed we are. Mary will make a wonderful mother and we are just thrilled to announce that Logan Riggs Florino will join the family in May.

I have dreamed about becoming a grandmother and having another special boy to love. I feel more blessed than I can articulate as I have always been convinced that Lupus would win and I would never meet you Logan Riggs. But your CiCi is a warrior and so too will you be. You will bring me strength, hope, love and laughter and those same qualities will be your legacy, but most importantly you will live your life with the integrity that your father and I have passed on to you and life will be good.

You are the new love of my life Mr. Logan Riggs Florino and I have never been happier about anything.

Gilby my Heart Dog 7 Feb 2018, 6:16 am

We adopted Gilby from the Houston SPCA in April of 2010. I had been very sick and after a conversation with one of my cousins, who also has Lupus, I determined I needed to get myself a “little” lap dog. It had been years since I had a dog and I was adamant about having a rescue so off we went to the SPCA for my pocket puppy. Somehow, while I was visiting the small dog area my husband ended up in the big dog area with him:

This is what he looked like when we got him. A little matted, a little neglected and very depressed with eyes that allowed me to see to his soul. We were told he was 3-4 years old and our best guess on breed is that he is a Golden/Pyrenees mix. Golden because I know a Golden when I see one and Pyrenees because he has double dew claws and is highly prone to guarding me.

We learned quickly, that Gilby, knew more about what was going on with my body than I did when one night he started going crazy, which is the only way I can describe it, and the next morning we realized I was hemorrhaging. This has happened more than once and when I call my concierge doctor now he asks what’s the dog doing? He said “if the dog ever does that again go straight to an emergency room – and don’t tell them the dog told you to come.”

Gilby and I have a very special bond which I can’t really explain. He suffers when I suffer and he’s my guardian and constant companion. This picture captures perfectly how we feel about one another.

*Photo Credit: Mary Meyer

When life gives you lemons....make limoncello. My Story. 4 Dec 2017, 2:51 pm

Finding my own Peace

I had a stroke at 28.

Multiple breast, thoracic, and bowel surgeries.

Stage 3 liver disease at 38.

Chron’s disease.

I’ve fought illness most of my life, with deadly pneumonia, vasculitis, diminished lung capacity and immune system failures finally leading up to diabetes and (SLE) Lupus.

Despite those challenges, my strong, positive mental attitude drove a successful career in the technology world. But the lupus reached its pinnacle in 2014, when I spent much of that year in the hospital fighting one attack after another. After three decades of fighting, my body wouldn’t fight anymore. I had to leave the career I loved, becoming depressed, physically struggling and believing I would sit in my chair until I died…and then she came.

During another sleepless night, I was surfing the Golden Beginnings Golden Retriever Rescue (GBGRR) website and found Candy’s profile. Everything about her made me sad and concerned. Bred way too young, her own growth was stunted. She had been on Craigslist after having two litters of 10, then four puppies. When I met Candy, I just wanted to take care of her and she soon joined my other GBGRR rescue Trudie in our home.

Candy Kissing a Young Stroke Patient

Candy and I were both “broken,” and together, we found our purpose. I trained her to in dog service duties and brought her with me nearly everywhere I went. I felt secure when she was with me. She gave me joy, cuddling with me and even checking to see if I was breathing. She would bring me my socks, the house phone, my cell phone, and remote control. And, she gave me a renewed purpose. While I was a busy IBM executive there was never time to give back. Now was the time.

I contacted nursing homes to see if anyone would like a visit. We found one, where a young patient had suffered a stroke and lost much of her mobility. The nurses told us she was unresponsive. But when Candy, Trudie and I went into her room, what a change we saw! When the dogs put their feet up on her bed, the woman smiled, rocked, and laughed with joy as they kissed her face and snuggled with her. It was at this bedside that I learned what pet therapy is all about. We have visited every Thursday since then, and the girls are considered resident dogs. Each week at least a dozen people tell us, "You made my day.” I wonder if they realize how much of a difference they’ve made in mine.

Candy and Trudie have taught me about unconditional love, affection, and given me a purpose again. Despite their difficult upbringing, my dogs knew love. They shared that love with me, and together, we bring that love to so many others to brighten their lives. Golden Beginnings gave me my life back and an opportunity to give back.

You can donate to our Lupus Foundation here: Donate Here

“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” - Elizabeth Edwards

Candy at the Annual Lupus Run

Candy Representing Rescue

Girls in Tutus - as they have affectionately become know

Who says you can’t go home……. 4 Aug 2017, 3:20 am

This past weekend, Revere High School class of 1982, celebrated our 35^th reunion and I went home. I thought about it for months and like all decisions these past couple of years I landed on two things “this may be the last time I can do this” and “I feel well enough to do it, now.” While I am adamant about living in the moment I also have a very keen sense of how travel could negatively impact me. So, decisions wait until the very last minute and if all the pieces fall into place “it was meant.”

I have been in Texas so long it is truly home now and I notice that I no longer refer to Boston as home. However, this trip I got that special feeling that only “home” provides. The energy from a place that shaped me and the love from those people who made it special including family, close friends and good friends from long ago. I am seeing life through a new positive lens.

Going home is good for the soul indeed - when you go with an openness of taking in all the good that had been left behind and endeavor to carry it with you for the rest of your days. Thank you to all who made it special.

Remember the times of your life.

Choices..... 19 May 2016, 1:41 am

Many of my friends have asked recently how I feel about not working after so many years in a career that defined me. I spent nearly 20 years talking about email. Yes, it’s that old and nobody could get more excited about it than me. It sounds like something nobody would chose to do, but I did, and I loved every minute of it. Maybe I loved it so much because I had a choice? My job is one of those things that I had to let go of and a choice I didn’t get to make. On a daily basis my body reminds me that it’s time to live in the moment, dance in rain, etc.

A few months ago we attended a very special night for the Lupus foundation where a local chef prepared a crazy 6 course meal, which was really 6 complete meals, to celebrate his own victories over Lupus. We chose to go and invited a few of our best friends to join us. I chose to put on my purple dress and GO OUT. It had been a long time since I had gone anywhere. My legs chose to fall under me that night and I took a tumble. I didn’t get hurt, just bruised my ego a little and surely was more embarrassed than anything else.

A few weeks ago, one very special Friday night, Doug and I ventured out to Symphony for the first time in over a year. Yes, we had to make some choices - we had to park in a handicapped space, we chose different seats than our usual box, I had to take the elevator, it was difficult to get to the bathroom and it still felt like the night of my life. On the way home something went terribly wrong. When we got home Gilby did his “momma you are sick routine” and I started bleeding. Hemorrhagic cystitis, again. My body chose to send me to the hospital once again. I chose not to stay, a choice which I have, thanks to concierge medicine.

Today was another challenging day. Another hospital day, another procedure and more news. My stomach has lesions that have been and are bleeding. Most likely related to the Vasculitis which has been the Lupus plaque of the past year. My rheumatologist has always felt strongly that we would find more manifestations of it somewhere and today we did. In fact, the report actually had the word “stigmata” which has actually been my ongoing personal joke about the lesions on my arms. This is not a term that should be taken lightly or joked about, and I don’t want to offend anybody, but it’s been my way of coping with something that is pretty scary, not well understood and demands hospital stays and mega doses of steroid pulse. I only chose to ask one question today “can we fix it.” Not how, not when, not what does this mean but just chose to ask for a glimmer of hope. My baby is coming from Los Angeles tonight. I don’t want to hear anymore right now.

So much balance….My Urologist. who I am now reacquainted with, is a man I had blogged about previously. He is the one who had the horrible bicycle accident that changed his life. He recommended Viktor Frankl’s book to me back when I was hospitalized with the water problem. The book was Mans Search for Meaning where Frankl writes “There is only one thing that I dread: not to be worthy of my sufferings….It is this spiritual freedom - which cannot be taken away - that makes life meaningful and purposeful.” Doctor is now recommending, Living Buddha, Living Christ.

Only one choice remains

“The best way to take care of the future is to take care of the present moment.”
― Thich Nhat Hanh, Living Buddha, Living Christ

What a Rescue dog taught me about people 24 Mar 2016, 5:03 am

What a Rescue dog taught me about people

I got a call midday. Rusty, a 9 year old Golden Retriever, had been dropped off at the Houston Humane Society by his people because “they no longer had time for him.” I thought to myself, as I headed over to rescue him, “what kind of people keep a dog for 9 years only to figure out they don’t have time for him.” Horrible people, most horrible people and I was angry.

He was a beautiful red golden with great pep in his step for 9 years old and confusion in his eyes. So, I got down on the floor and gave him a big hug and he agreed to come with me without hesitation. I loaded him up. He laid down in the back of my car, for over an hour, without a peep listening to Bobby Darin music with me while I drove him to meet his new foster family.

While we drove through rush hour traffic my anger started to wane as I looked back at him through my rear view mirror and thought about his future. As glum as his past may have been, as difficult as this one day had to be, with a rescue organization he was sure to do much better. He would have a wonderful foster family filled with love, patience and all the warmth, food, toys he could enjoy. When we arrived he was greeted in grand style by mom and dad, a pack of dogs and a pond.

The rescue organization would insure that only people deserving would have the pleasure to share life with a dog like Rusty forever. In that moment I realized that for all the horrible people in this world there are those who go out in the middle of the night often putting themselves in harm’s way to rescue dogs, there are those who unselfishly open their homes to foster, there are those who volunteer to do anything that is needed to help, those who make generous donations for treatment and care and ultimately those who open their hearts and homes to adopt. So many people who are so kind and generous. So many, GOOD, people………and even Rusty’s people did the right thing. They didn’t throw him out in the street, they didn’t give him to just anyone, they did the best they could and for that Rusty will get the Golden Beginning he deserves.

Learning to fly......and accepting what it takes to move forward 23 Jan 2016, 6:55 pm

This last year has been the most difficult in my life with regard to the progression of my Lupus. The year has also been filled with unmeasurable happiness with the joy of my son’s wedding and the success he has found along with a real home in California. I think this VERY balance has shown me that even in the darkest of hours there comes a rainbow and I want to see it!

This year has forced me to make decisions I could never get my head around. To reach deeper than I ever thought I could to see if I could come out on the other side. My career had defined my life in so many ways. I absolutely love my work. The people at IBM have become closer than family. I love interacting with brilliant people on a daily basis. I love the excitement of a successful sales career and all that comes with it. The crazy quarter end closes, the roller coaster ride and the reward of just knowing that we have delivered product that can transform a business. All this started to change when I found myself unable to breath on calls and barely able to speak sometimes. Too many random hospital visits, too much pain to focus at critical times, too much denial and a body that was literally falling down under me. Once falling face forward on concrete, in a skirt, at an IBM event in front of several senior colleagues.

I have been blessed and have the means to see doctors wherever I thought I could find them. I travelled to Baltimore and Los Angeles to see the Guru’s and what I learned is that my situation is what it is and there is no cure for auto-immune disease and no magic bullet that you can purchase. I became obsessed with the notion of a stem cell transplant curing me only to learn that due to the deterioration of my lungs I am not a candidate. The only thing I can do is take care of myself and accept what it is. In neglected the taking care of myself I am ultimately progressing disease faster.

So I became a hermit. I didn’t know what to do and honestly I physically couldn’t do much of anything. We stopped doing the things we used to enjoy because I can’t get from the car to my seats at symphony. So, we just stopped going. I didn’t really think about it a whole lot because I wasn’t ready to acknowledge it.

I love my home and my garden and I have built the perfect hermit crab paradise. However, there is more in life than sitting in a chair looking out at the garden writing, knitting or loving on your dog. My dogs bring me energy and purpose and truly help but still there is more to life and I was denying myself all that I had once enjoyed.

First I decided I should have some purpose, from this chair, because without purpose there is no vitality. I reconnected the local Golden Beginnings Golden Retriever Rescue where we got Trudie and somehow I ended up with Candy who is Trudie all over again. This has been very good for me. Candy has got me moving a bit more and indeed given me purpose. I think she can make a great therapy dog for me as Gilby is getting older and tired and I am working with her on that. I am volunteering and doing some application screening matching dogs to people and this has been very rewarding.

While all this is going on my IBM’ers are finding me some purpose deciding to run the Houston Marathon to raise money for Lupus. These competitive crazy kids started out with a fundraising goal of $3000 within a week they were at $5000 and before we know it we closed out around $8000. How is that for purpose from a chair? Who knew my Lupus could raise that much money? Lupus awareness and fundraising is so crucial. There are great doctors who believe we are close to a major breakthrough, however, today, there is NO cure for Lupus and limited targeted treatment.

I eventually had to concede that I must take long term disability. In doing so I have also had to acknowledge that I am handicapped and I need to learn how to “live” in a new normal. In a way that I can get out of the hermit bowl and into the world a bit more and bring more of what I have to offer.

This all starts with Handicapped plates, which I may or may not use but I am willing to accept. Learning how to rent scooters at events so I can go enjoy them. Wearing my oxygen when I need it and not feeling vain or embarrassed by it. Focusing on the moment, living in the moment and everything that’s special.

I may not be able to present a multi-million dollar solution to a customer anymore and I am sad about that. I remember some of those presentations and feeling like the quarterback at a super bowl game. It was so fulfilling. However, I have had the opportunity to do that and have those great memories. The memories I need to make going forward are about family, maybe grandbabies if I’m truly blessed, living every moment and every moment special. Who knows, maybe this break will help me back into some remission and I will be able to work again.

Systemic lupus erythematosus, often abbreviated as SLE or lupus, is a systemic autoimmune disease (or autoimmune connective tissue disease) in which the body’s immune system mistakenly attacks healthy tissue. There are many kinds of lupus. The most common type is systemic lupus erythematosus (SLE), which affects many internal organs in the body. This is the type that I have presently with lung involvement requiring me to use oxygen. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness (called flare-ups) alternating with remissions. In addition, autoimmune processes tend to come in more than number I also have the following: Vasculitis, Chrons disease, Hashimotos, Insulin Dependent Diabetes, Cushings. I am also on a 3 month watch list for Myeloma as I now carry a protein which causes myeloma most likely from Lupus treatment.

All this sad I can honestly say I am happy. Life is good. I have the best husband, son & daughter-in-law a woman could want. A built in support system that never lets me down. Everybody has something and the only bad something I have is this disease. Otherwise, I am a very lucky lady.

Living in the moment and every moment special.

Living, climbing your mountain 3 Nov 2015, 10:06 pm

The past couple of months have been a series of hills and valleys which reminds me just how fragile life is. As I look around I realize that this is how it is for just about everybody. I have friends who have lost children, who have children with Cancer, who have Cancer themselves, who have serious marital problems, who have lost their jobs, who have been touched by horrible tragedies; we all have our mountain to climb. As I am trying to learn how to best navigate the journey I have found that no matter how difficult it is - it is most important, in the lowest of valleys, to keep your eyes and ears on the summit. I make it sound easy…it’s not.

Lupus has been my nemesis for all these years, even before we knew what it was. My first significant sign of a bigger problem was a stroke at 28 years old. The second major manifestation was when I was diagnosed with stage 3 Liver Fibrosis when I was 37. It was another mystery. My response to that was to train and run a Boston Marathon in 4:10. When we crossed the finish line I turned to my running partner, who is a doctor and dear friend, and said "I am not supposed to be able to run Marathons." However, still not being convinced that one was enough I did it again the next year. This time my body fought back telling me I had already won and I should stop. The second Marathon was only going to be an awakening and one I wasn’t ready to face. We were moving to Houston, I was on a drug called Lupron to keep me from hemorrhaging and I was getting sick again. Life was good. We were moving to advance my career and start a new life. I didn't need to be running another Boston Marathon. I had not trained appropriately and was in a sophomore slump. This is the perfect example of how Lupus has a way of beating you back down. I didn’t run a 4:10 Marathon that second year. It took me an hour longer which meant I didn’t “run” I had to walk some. I thought I would die at the end and felt very defeated and disgraced with my 5:10 time. The lesson in this is to "listen to your body." There is no shame in boundaries, limits and balance. It was years later that I acknowledged that by just running a marathon I was in a small population of people who have all won just by putting their toes over the finish at 26.2. I was lacking balance.

The biggest challenge is finding balance is that you can NEVER really beat it and you can't win you must learn to roll with what life throws your way. My immune system will actually build up a tolerance to the drugs that once kept me in remission. I get about 3 good years on each new immuno-suppressent. These drugs all cause Cancer. Then we need to start all over again and it’s more difficult, the mountain is higher, every time.

As my disease progresses I am learning that the priority needs to be what really matters in my life and it is my responsibility to use the energy I have wisely. Many people with Chronic Illness refer to this approach as the spoon theory http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

I must treasure every moment and make every moment special. Maybe I can’t run a marathon anymore but I can encourage others, I can fund raise, I can visit nursing homes with a dog, I can knit hats and scarfs for people in need etc. It is important to feel relevant and be making a difference. The challenge this year is to learn how to really live with all the changes and determine and accept the modifications it will take to get back to the things I really want to do:

1. Spending as much time as possible with Rick and Mary

2. Being able to really walk my dogs

3. I love my job and the brilliant people I am so blessed to work with; both colleagues and customers. There is a gaping hole in my life right now and I dreadfully miss the intellectual stimulation. I need to find a way to get back to doing what I love.

4. Being an Advocate for Lupus Awareness and motivate/inspire others

5. Get Doug to the top of Kilimanjaro

My husband has been my rock these past 13 years. If it were not for him I would not be alive. While his easy going spirit would lead you to believe that he is minimally impacted by all we have endured the reality is that it surely taken a toll on him. He has been dreadfully impacted losing both of his parents and at the same time working to keep me alive both emotionally and physically. It is time for him to disconnect a bit and take his own journey – climb his own mountain.

Many years ago, when we lived in Boston, we went on a date to the Museum of Science Omni-theater in Boston to see a film about a Kilimanjaro climb. Doug was very moved by this film and said “one day I am going to do this.” I know that exact feeling! I remember the many years, on Patriots Day, on the sidewalks of Boston thinking I wonder if I could do this? I think the journey we have been through together has prepared and motivated Doug to take his own journey and challenge in new and different ways. My illness motivated me to run a Marathon and I think it has also in some ways motivated Doug to climb Kilimanjaro this year.

I plan to be coach, trainer, spokesperson and provide all the motivational inspiration required. I learned when I ran my first marathon your head is the key to success. If Doug can survive all we have been through he can surely climb this mountain – his head and spirit are ready and he has never been more motivated. As Jack Kerouac said “Because in the end you won’t remember the time you spent working in the office of mowing your lawn. Climb that Goddamn mountain!”

Watching Love Grow & Transform 28 Apr 2015, 6:52 pm

This weekend truly was one of the happiest of my life. My dear son married a wonderful lady. I do not have words to describe the joy in my heart and it all feels like a dream now. I have watched Rick grow from a unique boy to a successful Hollywood writer in these 30 years. He has a heart of giving and everything he does he does with his heart. His bride looked like an angel on the beach with her skirt flowing in the wind and a smile that never stopped. As his best man and friend Jeff Kendrick reminded us "it is difficult to write a speech for a guy who has written speeches for some very famous people," I took a few minutes to offer this toast to my son and now my daughter! I love you both so much.

Thank you all so much for joining us for this wonderful celebration. We are so blessed to have guests who travelled from all over the country Boston, New Hampshire, New York, Texas to share all the love we feel in this room. I also want to take this opportunity to thank those of you who have truly made California “home” for Rick. First and foremost our beautiful bride, Mary. Welcome to the family. We couldn’t be happier for both of you.

When Rick was 18 and entering his last year at Boston University he was considering an internship program here in LA and I told him if it’s meant it will happen. It happened and when Rick was 19 I dropped him off in LA, a place where we didn’t know anybody, to begin working towards his dream of becoming a writer. I knew he would never come home again. But home isn’t always where you grow up it’s more about where you belong and Rick very quickly decided that he belonged in LA. I believe there was more to it than the work, it was about the people who came into his life as friends and supported him Jeff, Cory, Boerklin, James Patrick, Eric German and I apologize to the many I have missed who have truly made LA home for Rick.

Four years ago Rick called me late one night and said “I met somebody, I’m really happy and I want you to come to LA to meet her.” Knowing what a discerning guy Rick is I knew immediately this had to be real so I planned a trip and came to LA to meet Mary. That’s when I realized he would really never leave LA because he was in love with this beautiful little lady and I knew if it’s meant it will happen. We have spent the last four years falling in love with Mary as a family celebrating wonderful holiday times, spa weekends and quality time watching them grow together as a couple. I think it is so wonderful how Rick and Mary’s personalities complement one another. We were thrilled when he called to tell us he wanted to ask her to marry him. It was meant - it happened!

My advice to Rick since he came to LA has been keep writing, keep dreaming. My advice to both of them now is Rick, keep writing. Mary, make some babies and both of you keep dreaming together. May the joy we all share this day, in this moment, for this special couple keep our hearts warm for years to come. Here’s to Rick and Mary may the mutual love and respect you share continue to grow and bless you.

Holistic - relating to or concerned with complete systems rather than with individual parts 8 Mar 2015, 3:52 am

I grew up in New England and considered myself a reasonable gardener until I moved to Houston. When I moved to Houston I decided that perpetual summer just meant a twelve month gardening season. I only understood spring/summer as gardening months from my 40 years in New England and it was important to plant your bulbs in fall. I made an assumption that 12 months of spring and summer-like weather meant that I could transplant everything I knew about gardening into an extended season of all year, YIPEE, how it warmed my heart and soul. I went about planting things like geraniums, peonies, lots of fun rose varieties, sunflowers. I must admit I had some fabulous blooms but they didn’t last 12 months and in many cases it took me YEARS to get it through my head that this was not the right approach.

Once I figured out that the conditions, here in Houston are very different: there were extreme heat, tropical and humid conditions and even some drought I started to have more success with my gardening. I am a smart lady but when I look back I realize it took me years to change my thought process and all my zeal, passion and know-how was really not enough. This had to be handled differently, holistically, in order to achieve the desired result. I became an observer and a seeker of knowledge. I have no idea how many plants I nursed to bloom, only to die, or how much money I spent replacing things but sometimes that’s how we learn.

Once I started neglecting a few things – leaving almost dead plants on my potting bench – which I affectionately now refer to as the “triage & rehab” zone I learned even more. I ultimately was forced to become the learner. Season after season I was spending more money on “new” plants that only thrived for a season. What happened to my 12 month theory of perpetual spring/summer relating to perpetual-blooms. I was not approaching the landscape in a holistic manner. I was considering only the tiny piece that I had knowledge of, as a basis for what turned into limited success, if you could even call it that. In order to achieve the garden nirvana I was seeking I had to completely change my perspective and garden with “nature” vs. trying to force it. I began talking to local nurseries and gardeners and taking bits and pieces of their knowledge to build continue to develop the garden. How to invite the caterpillars to hatch their butterflies and attract the humming birds naturally. All things with contribute greatly the cycle of pollination and Garden Heaven.

In thinking about my Lupus more recently I am learning that the same is true in medicine. It is rare to find a specialist who can view my situation holistically. Somehow we have come to believe that doctors should have answers and solutions to everything. The reality is they have established protocols for certain things that they do know how to manage very well. Not unlike anybody, in our ecosystem today, they are overworked and underpaid. Forced to see too many patients and success is measured in minutes. They have volume and when there is protocol they do well. There is no time or funding to manage anything differently or even think differently about it. Unique approaches are not encouraged in practice. Research dollars are focused on those things that may result in drugs, highest number of positive results and revenue. Similar to my gardening in New England. It was pretty straight forward and not worth investing any more than was necessary; as the weather and conditions surely created some harsh realities we were also guaranteed some predictable results with tulips in spring, geraniums in summer and sunflowers and beautiful foliage as we moved into the fall. However, Lupus is a multi-faceted disease that may affect every system and structure in our bodies and may be unique from individual patient to individual patient. When we get to the point that we are treating symptoms, if our caretakers are not thinking, holistically we must be mindful of what to do and what not to do always considering the entire picture. We must be our own advocates.

My Rheumatologist and I recently had a candid conversation about his time at Baylor and why he left. We talked about how Rheumatology is one of the last specialties to receive any funding and how he was unable to relate any significant success factors to the sacrifices he was forced to make personally and even with his patient care. All that said, I am not convinced that there is not some holistic solution to the cruel mystery that is lupus. As I navigate my care and decision to treat symptoms through various specialist I have concluded this may not be the best approach. I have had multiple experiences with specialist recommending things that we (my medical team and I) have learned would be harmful to me as they attempt to treat their tiny piece of the puzzle. Fix this - break that.

All that said, I am not discouraged, my garden is thriving as I continue to improve this one lacking area of my life. I am blessed in so many other ways and still believe my Lupus won’t be without purpose. If my journey results in minimal pain and suffering, knowledge, a less eventful journey for even on other person it was all worth it.

I have said probably more than a few times my rheumatologist is confident that within my lifetime there will be advances that will make significant impact. I have just started reading about stem cell implantation and a woman who claims she was cured of Lupus http://www.stemcellresearchfacts.org/jackies-victory-over-lupus/

In contemplating stem cell transplantation there is some logic in treating underlying cause as it appears that even when the immune system can be quieted down it is only for a season and eventually the options run out. The major organs/systems affected remain damaged. They say nobody dies from lupus but what from what it did do them.

There is more about it here as well: http://www.stemcell-immunotherapy.com/research_transplant.html

Make it about the Journey!

Cure: Is a very intriguing word here.

The Beauty Every Day around Us can Keep Us Grounded and in the Moment - For Rick & Mary 3 Dec 2014, 1:56 pm

The past few weeks have been a whirlwind of doctor visits and difficult discussions about high White blood cell counts, what that could mean and difficult choices. Time to come back down to earth and live in the moment, focus on the beauty and wonder around us.

Last week we had a fabulous family time for Thanksgiving and a celebration of Rick’s 30^th birthday. The trip began with an upgrade to First Class and a full reclining sleeper seat which was a sign to me this travel was meant to happen. The celebration and family time removed me from the sterile medical place I had felt a little caught in. Then a marvelous trip to Napa topped it off. I came home truly refreshed and rejuvenated.

On the way home from the airport I stopped to buy a fresh green wreath for my door, to get ready for what promises to be a very special Christmas, and couldn’t resist these peonies. For days they have continued to open and bring joy to me a sign that something wonderful is about to happen.

My son proposed to Mary today and I am over the moon happy. I am looking forward to their Christmas visit and helping Mary plan the wedding. I am looking forward to their wedding, their life together and hopefully, when they are ready, a grandbaby. Life is so good.

White Blood Counts on hold until after Christmas as I live in the moment and every moment special. This joy will get me that far.

Seasons 6 Nov 2014, 1:11 pm

Seasons and transitions are welcome in gardening and bring growth and new life. Through every season there are positive and negative impacts that keep the balance. My Lupus journey has also been a host of winds, waves & lightening but often times moments of great sunshine and even solstice. The key is to flex with the wind, ride the wave, dodge the lightening and soak in the moments of great light in order to store energy for future endeavor. While I must admit there are days when it would just be easier to roll over and give up that is not an option.

I measure my Solstice in personal triumphs and this week I experienced one. I have found that, for me, working is a critical part of my Lupus journey. I must have purpose and keep my brain busy. I made a difference. Just like I must keep my body moving. Therefore, my career and career growth are important. I had applied for a promotion I have been chasing for many years. While most Lupus patients are fighting for Disability Benefits I am fighting for a promotion so I can enhance the value I bring to my corporation. I am blessed to work for, IBM, a company that does an outstanding job making it possible for people with disabilities to have wonderful careers and grow. The support IBM has offered to me in many ways has kept me fighting my Lupus. I am elated to announce that this week I was offered that promotion. I am rejuvenated, excited and ready to dig deep to make a difference.

Turn it Around 26 Oct 2014, 4:16 pm

My most recent flare up has been challenging, akin to a difficult winter in gardening. As a result it was determined that it was time to take some more aggressive measures. If there is one thing I have learned through my Lupus journey it is that our auto-immune systems eventually will fight harder than our present medications/defenses and we have to change up our plan of attack to intervene. After a harsh winter we take interventions and with patience they result in wonderful blooms once again. For now, our attack would come with Methotrexate, a powerful chemo drug. 3 weeks into my Methotrexate adventure I once again became dehydrated with electrolyte in-balance. I know the harshest or winters bring upon us the most unexpected twists and turns. So this all happened while my dear husband was out of town.

Time to call in the reserve troops and extra support. With my wonderful friends at Rover Oaks, Cory, LaRae, Gretchen & Mary we got the dogs to Rover Oaks and Myself into a hospital bed, with company, early on a Saturday morning. My number one objective was to have a PICC line placed ASAP as I have learned that this is my “get of jail free” card. The quicker the PICC goes in the faster I can go home and infuse my fluids and medications in my own garden. My logic, “It’s Saturday afternoon if the PICC line goes in on Saturday I can be home on Sunday.” Interventional radiology doesn’t come in until Monday and who knows what time they would get to me, and then I would have to stay at least 24 hours after that. So I opted to have the procedure done in my bed. I don’t recommend this, and it didn’t result in my going home any sooner. However, I was in control and that mattered.

The harshest of winters NEVER surrender to our will but naturally require patience. As it was, I found myself still in the hospital Monday morning receiving Magnesium, Potassium & Fluid. So I decided to “turn it around.” I had a customer call at 7:30 AM so I went outside my room, took the chemo sign on the door and “turned it around.” On the back of it I wrote, “Do not enter this room until 8:30 AM.” I am in charge! I only hesitated for a moment to think about why a drug that is supposed to help me is so powerful it could hurt somebody else. Anyway, the bloom to the story is that seven days later I was dressed up Old Hollywood Glam to attend a wonderful Gala for the lupus foundation of America Gulf Coast chapter. Can you see a PICC line in this picture ;-)

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