Cure4Lupus.org - Kendra's Story

Toxic Treatments are not a Cure!!

Promoting Lupus Education, Awareness and Research. Providing Support, Lupus Awareness Products and Merchandise. Be part of the cure!

Kendra's Story

My name is Kendra and I suffer from life-threatening SLE. I am 29 years old and the founder of Cure4Lupus.org. Lupus is a disease that affects everyone very differently. Some people have different symptoms than others, and some people have life-threatening disease while others just have some sore joints every once in a while. I thought I would share what Lupus has been like for me, not to complain, but to shed some light on what it is truly like to live with this disease.

I first started having symptoms at age 13, I had joint pains, headaches, and stomach problems. I was treated for tendonitis, stress headaches, ulcers, scoliosis, and other "minor" illnesses. By the time I was 17 it had become apparent that I was suffering from something more than a string of unconnected illnesses.

I was not insured at that time so my doctor visits were sporadic at best. I was told at this time about my great-grandmother that had Rheumatoid Arthritis (RA), so after doing some research, RA was my best guess. The join pain and fatigue had progressed to at times crippling. I began missing work, losing friends, and separating from family. My "bad days" were more like bad 3 days.

At 18 I got insurance for myself and began seeing a doctor. He told me that based on my lab results Lupus was more likely than RA, however more work needed to be done. I lost my insurance and wasn't able to continue treatment. For he next several years I went through many flares and remissions. At times I would be "normal", and other times I would have crippling joint pain and fatigue. I occasionally had skin rashes, especially if I was exposed to the sun, and I made many trips to the emergency room for a wide variety of illnesses like dehydration, kidney infections, gastroenteritis, severe arthralgia, etc. I missed a lot of work, sometimes for months at a time, I lost many friends, and even my family could not understand what I was going through.

At age 24 I again got insurance for a short time and began seeing doctors again. I was diagnosed with Premature Ovarian Failure secondary to the Lupus. I basically went through menopause at age 24. With the hormone changes I gained about 20 lbs. My flares were getting longer and closer together until I was counting the good days because it was easier than counting the bad ones. I eventually had to quit working and file for disability.

I finally got the official Lupus diagnosis in early 2004 at age 26, making me officially un-insurable. At that time they discovered that there was severe damage to my kidneys, and I was admitted to the hospital for a kidney biopsy. The results came back as WHO Class VI Lupus Nephritis. I was told my kidneys were scarred the most they could be and there was nothing they could do to treat it, the damage had already been done over the years I wasn't seeing doctors. I was told that my kidneys would fail and I would need dialysis and a transplant.

This was the time I was started on the prescription drugs. I have tried so many drugs I couldn't possibly remember them all. Some of them I have been allergic to, causing all sorts of nasty reactions, I have had drug toxicity, due to my kidneys inability to clear them from my body, and many just plain didn't work. The "best" part however has been the side effects of the ones that actually worked.

One of those meds was Prednisone, a steroid. After starting Prednisone, I promptly gained another 30lbs, my face turned into a balloon, my ankles became flotation devices and my skin lost collagen so I got stretch marks all over my body. Another fun medication I started on was a chemotherapy drug called CellCept. This one cost $400 a month and for that I got the pleasure of daily headaches, thinning hair and reduced resistance to infection. When I was having a particularly bad flare, I would get a bump in Prednisone and another 10lbs. Here is a before and after picture of what Prednisone has done to my appearance in just a couple of years.

After moving back to Iowa where I am on a program for the un-insurable, I have seen some of the best doctors in the world at the University of Iowa. I am getting excellent care, unfortunately that hasn't necessarily meant I have felt better. They doubled my dose of chemo, tripling the side effects. Because of my decreased resistance to infection, I got a case of Shingles for the record books I think. If you haven't had the pleasure, let me just tell you it is a little slice of hell! I have endured a lot of pain in my day but Shingles takes the cake, by far! I also got a complication of Shingles known as PHN which is basically code for the pain hangs around for months or even years after the rash is gone.

Currently, April 2008, I am taking pills 5 times a day, over 50 pills per day in all, not counting any as needed meds. I have manageable pain (and by that I mean Vicodin is my friend), severe insomnia, Lupus "brain fog", depression, anxiety, edema, nausea, Hypothyroidism, Sleep Apnea, headaches caused by Idiopathic Intracranial Hypertension that threatens my eyesight, and a simple infection or virus lands me in the hospital. My Lupus is pretty much in remission right now and most of the symptoms I still have are due to medication side effects.

I have been able to reduce my Prednisone dose and fortunately I lost about 40 lbs in the last 6 months. My kidney function has been stable for 2 years now. My energy level has also improved. As often as I am able I spend my energy trying to raise Lupus Awareness and money for Lupus Research. It is very important to me to spend time with my family as much as possible. I am blessed to have an amazing, loving, supportive family, including a husband who has shown an amazing unconditional love!

Now that I have talked about all the bad things it is only fair to mention the amazing gifts I have gotten from having this disease. I know that sounds strange but, I am honestly thankful for the patience it has taught me. It has also taught me to live in the moment and to make the most of everyday. Lupus has also given me an amazing amount of compassion and empathy for others! I am most grateful for the strength I have built, I know I can make it through anything!

Accepting that Lupus changed what kind of a person I was has been the hardest part of all this, but I now know that I was never intended to be that person anyway. I have become so happy, fulfilled and proud of the person I am today. I feel so useful and alive because of my work with this website and with the Lupus Foundation of America, Iowa Chapter, I can no longer imagine not having them in my life! I am using all of my God given talents and we are making a real difference! My only desire is that we continue to grow and impact people's lives as well as public awareness!

Text on this page may be copied and reposted if there is a link to this site posted with it.

This is not a medical website and information on this site should never be substituted for medical advice. Always consult a physician before making any medical decisions!