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.