Claire Kaiser's Story

What were the steps leading up to your diagnosis?

As a child, I was frequently ill with strep throat, and stomach conditions. By the time I was 12, I had had pneumonia three times. At the age of 13, I began to have seizures, which doctors claimed were due to severe emotional trauma.

At the age of 22, after the birth of my oldest son, I suffered a mini-stroke. The doctors did not believe that I could have had a stroke at such a young age, but after they did further testing, they realized that I had indeed had one.

After that, I came down with double pneumonia, and the membrane around my heart became inflamed. I could not walk without aid for several months.

I did not have medical insurance at the time, so was not able to see a doctor regularly. I was always being treated on an emergency bases, and being sent home as quickly as possible. I felt hopeless.

In 1996, I was diagnosed with cervical cancer. I received chemotherapy for as long as I could pay for it, but had resigned myself to the idea that I would most likely not live long, and started to make arrangements for my son, upon my death. Surprisingly, I beat cancer, and even though I only weighed 74 lbs, I had less pain and other symptoms, before I had received the chemo.

My mother also suffered from lupus, so they suspected that I might have it as well.

After months of being in and out of the hospital, and extensive testing, they diagnosed me with SLE with central nervous system involvement. It was such a relief to finally know what was wrong. I was tired and at the end of my rope, but was not done fighting.

I began treatment for SLE. I worked 8 hours a day to be able to afford the doctors visits and medications. I wanted to give up so many times, but one look at my son and I knew that I had to keep going and learn to live with this wolf-like disease.

What lifestyle changes have you needed to make?

After being diagnosed, I, unfortunately, did not have any choice but to keep working on a full-time basis. I needed to see a specialist once a month for my SLE and go to follow up appointments with my oncologist.

I was put on several medications in an attempt to keep my immune system under control. I was put on high doses of cortisone, Plaquenil, and Ibuprofen for pain. I also received medications to help with all of the side effects caused by these medications.

My hair fell out; I had heartburn, constipation, nausea, bloating, itchy skin, and heart palpitations. I needed to slow down and take care of myself, but I knew that was not an option.

In 1997 I met my husband, and against all odds became pregnant. My husband was a German military soldier. After we married, we moved to Germany, where I was able to get full medical coverage.

Although my pregnancy was hard, I was able to rest, and truly start to live a more positive lifestyle. I changed my diet, started sleeping a good 8 hours a night, and was able to visit doctors regularly.

What accomplishment are you proud of?

Despite having lupus and a few other autoimmune diseases, I have accomplished a lot of things that I am proud of.

I have two wonderful, healthy sons. I have my own business, which I run out of my home, I wrote and published a book about my life story, and I have founded a few non-profit organizations and gifted them to people in different communities around the world.

What's your advice to someone else living with Lupus?

My advice to anyone living with lupus is to take care of yourself, don't forget to rest, spend time with your family, and work only as much as you are able.

Take your medications, drink plenty of water, do not worry about your weight. Eat what makes your body feel good, exercise only as much as you are able.

Have patience with yourself. Do not ever be afraid to ask for help. Accept that you will have good and bad days. Watch as many sunrises and sunsets as you can.

Take time to listen to your own body, and make deep connections with the people and world around you, and breathe.

Who has been there for you? How?

I am very thankful for my husband and two sons, who are now grown.

Lupus has done a lot of damage to my body over the years. It has affected my kidneys, heart, lungs, skin, central nervous system, sight, digestive system, and has left me wheelchair bound.

My husband has stuck with me through thick and thin. He has made it possible for me to continue to work and holds my hand through the hard times. My sons are incredibly supportive. They go shopping for us when my husband has to work and they spend time with me when they could be out with their friends.

I am happy that I can call home and talk with my mom and dad when I am feeling emotional.

I am also very thankful for my friends, who not only celebrate life with me but work with me as well. They never mind hauling me around in my wheelchair and always visit me during my hospital stays.

I have the privilege of having some extraordinary people in my life, and I love them deeply with all of my heart.

Is there anything else we should know?

I document my illness. I do this in both English and German, online through social media and videos. I do this because when people get diagnosed, they are usually very afraid.

I am very honest about my disease. I am fully aware that not everyone can be that way, and I respect that. I am always willing to help others out by listening to them.

Sometimes it helps people to deal with pain, just by talking about it. I am presently trying to compile experiences in dealing with lupus, and want to write a book in German about them.

There is very little personal information available to Germans about lupus because the disease is very rare in Europe. I also make wigs and donate them to people with medical hair loss issues who can not afford them.