"We Have Lupus"

It was about ten years ago that a handsome, African American Male came to my office at the Lupus Foundation.  He asked if I could meet with him privately to speak about his wife.  She had just been diagnosed with lupus.

Bev was a nurse. She had a very colorful career. She was able to travel with her clients as a private nurse. As we sat in my office and I listened patiently I realized that I was actually being interviewed by him. He wanted to make sure that the Lupus Foundation was a safe place to bring his wife for education, support and comfort. This was a very unusual setting for me.  I was quite intrigued by this man.  I could not believe the love I was witnessing; so great that a man would step out without his wife’s knowledge to interview someone who might be of value to her with her lupus journey.  I must say, it is not often that I see this type of relationship. During our visit I shared with him details about lupus and how his wife’s journey with this chronic illness might unfold. I assured him that together we could help his wife with the new direction of her life. He was quite grateful and he was positive that he would be able to get Bev to attend a support group meeting.

He was a man of his words.  Several weeks later he showed up with his wife, Bev, to a support group meeting I facilitate.  She came kicking her feet. I am sure she had gloves on, or else all of our eyes would have been scratched out.  Well, there it was – denial, fears, anger. Bev presented all of these emotions at once. I am thankful that her husband, Virgil, came with her.  If not I would have been fearful.  You could tell that this woman was truly the heart and soul of her large family.  Bev and Virgle have quite a blended family.  You could tell that she was quite comfortable being in control of her world.  After a while, she began to share her concerns, fears, anger and attitude.  This was one of many steps of her acceptance of life with a chronic illness.  She cried; she hugged; she kissed; she cried again and again. After this huge release of emotions that had built up, there came the eventual sigh of release.  

Interestingly enough, Bev and Virgil both began coming to each support group meeting. During the introductions, Virgil would always say “we have lupus”. He said it well. This man held this woman up each day with his love and patience. And this woman held this man up with her love and gratefulness to him. Together they championed a huge storm.  Too often that storm has kicked up again and again. Still there they are. “We have lupus.”

It has been ten years since I first met Virgil and Bev. They still come to all the meetings. They are avid volunteers and supporters of the Lupus Foundation. Bev co-facilitates one of our support groups. She is still a hugger and a kisser and a crier. But, today, she weathers the storm and brings a rainbow with her to each group she attends.  Her journey has been filled with much adversity and many challenges. The difference is that, now, she looks for nothing in return. Instead, she and Virgil are on the giving end of things. Together with their lupus, they stand ready for anyone at any time to help them live better with lupus. What a gift they have been to the Lupus Foundation of America.

Bev has made adjustments in her new world with lupus. She has been become very knowledgeable about lupus and shares this knowledge with many.  We are sad that they have lupus but remain grateful that they found us and trusted us to be part of their extended family. Together, we champion the many storms and yet we know the seas will calm and the rainbows do come out and we will be there together through all of it.

Lesson Learned: Love is greater than any illness and two can manage and triumph better than one. Fear and frustration can be overcome while turning the focus on others and not ourselves. Education and support are both great medicines. God bless them both.

Second Pearl

I am struggling with the placement of each “pearl”. I do not think I can place them in chronological order. There are so many pearls, and from them so much to learn. So, here is the “Pearl” that comes to my mind today.

This young, beautiful, blonde girl wanders into my Brecksville Support Group. Following behind is her mom, dad, grandmother, grandfather and boyfriend. I’m thinking a bus has arrived. As the session begins, the father starts to shed tears, the rest of the lot soon to follow. Now, keep in mind that we have just begun our meeting – we hadn’t even gotten to the “good stuff”. I was startled by their behavior. I wanted to find out why they were all so distraught, but I wanted to get to know them first. I needed to learn more without being pushy. What a challenge! I came to discover the young girl’s name is Cat. Not much to my surprise, she had just been diagnosed with lupus. Interestingly enough, Cat has an identical twin sister. Her twin does not have lupus. Once discovering this piece of information, I became really intrigued. See, I, too, have an identical twin (another pearl for another time). And, just as this girl, my twin, does not have lupus.

Learning that my twin and I are not the anomaly case in an ocean of identical twin lupus patients has led me to a new realm of questions. Is lupus genetic? Do environmental triggers play that big of a role? Does anyone know? God knows I have searched for the answers with no good responses. So, this has sent me off on another mission. I am now in search for multiples with lupus. I am planning to have a “Think Tank with Twins”. This think tank should equip me with enough information to share with physicians and researchers and bring a fresh prospective to the discussion. Now, back to Cat.

As time went on, she and her posse continue to come to our many lupus programs, and I had the chance to learn more about her journey. 

This young lady has kidney involvement with her lupus. Her road has been full of bumps and many problems. Large doses of prednisone had started showing in her face. Her many hospital stays had taken a toll. She had been trying to go to school and work. She had starting filling her pill box with more colors than a rainbow. Her family had been living in fear of losing her. At each meeting they attended, tears continued to be shed; pain continually in their eyes. Each time they came, I knew I needed a box of Kleenex on the table. 

 Lupus has been a roller coast of adversity for Cat. Just when she was knocking at heaven’s gate, God has sent down the angels to pull her away. The lupus has since gone into remission. She stopped attending our support group for several months. This is typical of lupus patients. When things start to look up, lupus patients tend to step back from programs and rest on their laurels. This response is understandable but remember, (here’s the big lesson): it is not only important to receive from a group or an organization, but it is just as important to be there for others who need your help now. 

A year passed and I discovered Cat was getting married. In fact, the whole support group was invited. Several months later, Cat shared with the group that she was pregnant. The group was very concerned because Cat experiences kidney involvement and pregnancy puts an enormous strain on your kidneys. She was put in the hands of a high-risk doctor, information that put our minds at ease. Well, God gave her a miracle – a beautiful, healthy baby boy. Lupus stayed in remission. Praise God. She and Luke were able to buy their first home and she went back to school and all was good for a time. Another year passed! She got pregnant again. OH NO! Anything that could have gone wrong did! (There is a happy ending here but I am not going to share it with you at this time.) 

Cat came back to our support group last month. This time I saw a very mature and wiser Cat. She came embracing a tiny baby boy. She shared the whole experience of her second high-risk pregnancy with our support group. This time we were the ones in tears. But not Cat. She was strong, steadfast and, most importantly, a survivor. 

A couple of weeks ago, Cat came into the office to share her high-risk pregnancy with our staff. We recorded her testimony on video so we can all benefit from her experience of triumph and personal growth. Her story is so important to have shared with our fellow pregnant lupians.

So, you will have to stay tuned to see her video.

By the way, I asked her father why he cries all the time. He responded that his father cries too and a family that cries together stays together.

There is so much we do not know about lupus, and one thing I do know: Lupus patients learn more about lupus by living with lupus in community. We all have a unique journey and a unique prospective to share. I strongly encourage everyone to participate in any Lupus Foundation of America’s educational programs and support groups. They are the leading source in the country for the latest and most accurate information about lupus.

My First Pearl

My experiences through the past 25 years have been priceless. The many faces of lupus are imprinted on my heart and  there are sixty inches of  precious pearls on my strand, so I had better get started.

I was nine when my journey started.

There were many theories on what ailed me as young child.  One was Rheumatic Fever, another was mono.

My first pearl on my strand would be my mother, Rose.  When I first came down with symptoms she was the driving force behind my wellness.  My mom had four children and worked full time.  As I look back and reflect on our many hospital stays and doctor visits, I am now aware how cumbersome the task of caring for me was.  Since lupus was very mysterious, I was not correctly diagnosed with lupus until I was 27.

Doing her very best to take care of me, she and dad would pull me out of school each winter (we live in Ohio) so that we could be in Florida. After all isn’t the sun healthy for everyone? Obviously not true for lupus patients.  So, each winter I had rashes and sunburns.  They did not know that the sun was my enemy.  

**Do you know that the sun is the enemy for lupians? This is true.  Long exposures to the sun can bring a dormant lupus to surface.  We are very sun sensitive and many of us suffer from photosensitivity.  Sun tan booths are an absolute no for us.  Sunbathing too!  We need to limit the amount of time we are exposed to the sun.  If you must go in the sun at its peak, be sure to use the highest level of sun block you can find.  Remember to read the instructions completely.  There is a company that sells sun protective clothing for those that must be in the sun.  Also I have seen UV umbrellas. Try to limit your exposure and do not go out in peak times. Remember too that because we lack the sun we will most likely need vitamin D to take its place. ( Ask your doctor about it).

The other challenge was at the same time, I took penicillin every day of my life until I was 18.  Really?  How crazy was that? You need to know that the biggest challenge a lupian can face is infections.  We have a very difficult time fighting off infections and often infections are the cause of our demise. 

Since I was taking large doses of antibiotics, I was at risk for my body becoming complacent to the drug.  I was constantly fighting off colds, strep throat, etc.

So, at the end of the day, my family thought they were helping me but were actually contributing to my illness.  How sad is that? They did not know. They thought they were doing what was best for me.  Still… my mom was the one who brought me to the Lupus Foundation of America when I was 27.  She was a member first.  She was determined to make up for the past and get me on the road to wellness.  I remember fighting her tooth and nail, not wanting to attend that first meeting.  I followed her and bless her heart; she knew it was exactly what I needed.

To be in the presence of others that have walked in my shoes was such a relief. Finally, there where others out there in the world that had similar challenges.  Through the years, I have learned so much from the LFA and most importantly, I have fostered relationships with my fellow lupians that have lasted my lifetime.  Together we have met challenges, and together, we have championed them.  One of my favorite sayings is “There Is no I in lupus, but there is an US!”

I will be eternally grateful for my mom dragging me to that first lupus meeting.  Today I lead a support group.  Wow!  It is better for me than most of my meds I take! 

Get involved with the Lupus Foundation of America; I promise you, it will change your life.  There is no reason today that a lupus journey should be a lonely and misunderstood one.   Mom knows best, and I am grateful she took charge and did not give up on finding what was wrong with me.  It was through her tenacity that I got diagnosed.

Why the Pearls?

I have this tremendous fascination with all that glitters. I was a jeweler for ten years when a stroke changed the direction in my life. I am especially drawn towards pearls. As my journey continued with lupus and I let go of my old life, I learned a way to welcome my new life with lupus. As I left the jewelry industry and the world of glitter, gemstones, gold and pearls, I embraced all those with lupus. They became my new gems. Some were rubies, emeralds, or diamonds, but most of the time I thought of them as pearls.

Each person with lupus that I met was different.  They were one of God’s creations. The shells for the most part the same, but the insides were pearls. In them, I saw a lustrous beauty that was a work of art that had layers of a type of nacre. Unique and complicated: yet still beautiful.

The definition of a pearl can differ but here are my thoughts. A pearl is a living gem, and each pearl is a miracle of nature. A pearl is the accumulation of a slightly translucent material, called "nacre" (better known as "mother of pearl"), similar to the lining found on the inside of nacreous chells. This is what gives a pearls its unique lustre and iridescence. It takes thousands of very thin layers of this nacre to make a single pearl. It is the composition, structure, thinness and evenness of these microscopically thin pearly layers that distinguishes a high quality pearl worth thousands of dollars from another worth a great deal less. It is a remarkable feat of nature that a living oyster produces such an exquisite work of art.

Thus here is my story of my strand of pearls. For the sake of this blog it will be called Suzy’s precious pearls.

In my blog I will introduce the many pearls I wear around my neck. There will be many. This year I celebrated my 60th birthday. For a gift I received a 60 inch strand of lustrous pearls. I wear them proud. It is a privilege to wear them. Each pearl is named after someone that has impacted my life with lupus. I am excited to share each pearls story one at a time with all of you.

I pray that someday I will have a strand of pearls that is endless. I pray that I will be able to continue my lupus journey and share even more pearls with you.

Each pearl has shared a special place in my life. Often times a lesson came with each.  Some other times empowerment.

To all my fellow lupians.... stay tuned you are most likely on my strand of pearls that I wear around my neck.

Hello, and welcome to my blog.

I feel a need to share my journey.  It has been a long one. Often times it was a lonely and fearful one. Other times, it has been rewarding and fulfilling.  Now, I have decided to begin this blog to share my stories. I ask that you be patient with me as I pull thoughts and issues from my past experiences, while still focusing on what is on the horizon for lupus.

I was nine years old when my journey began. The inflammation forged throughout my body. There were fevers, nose bleeds, oral ulcers, rashes and unexplained pain.  It would be a long and confusing journey, going from Doctor to Doctor in search of a diagnoses and treatment.  There were peaks and valleys and many frustrating challenges.

Finally, when I was 27, a concrete diagnoses came my way.  Systemic Lupus Eryestemignois.  What the heck is that?  My husband and I looked at each other and wondered how to pronounce it, let alone spell it.  Still, what a relief it was to me that this thing that consumed my life had a name. I no longer felt like a hypochondriac. I had a name that validated my daily struggles. Praise God!

Thinking back, I was fearful that each day could be my last. Little did I know what God had in store for me.

 I went down this lupus journey with him always leading or carrying me.  I have much to share with all those who embark on a lupus journey.  Other lupus patients have been my strength. It is because of them, each day I forge ahead to make a difference in the world of lupus.