CIRCLE OF INS-POW-RATION - stories of hope

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"Circle of Ins-POW-ration - stories of hope" is Prayers on Wings' program to perpetuate inspiration, where people submit their stories of challenge, hope, and victory.  Prayers on Wings really encourages communication and sharing your own just never know what your neighbor is going through or how you can help.  It is our hope that in these stories maybe one person, or two, or a hundred, will be inspired as their go through their own crisis.  For more stories of hope click here.

Janella <3

The person I am today started when I was 14 yrs old in 1982. That was the year I was diagnosed with Lupus. Back then, I didn’t know that the doctors who informed my family of my diagnosis told them that since the disease had damaged my kidneys, it would be likely that I wouldn’t live a long productive life. I’m glad I was unaware of this information, as all I ever wanted to do in life is be “normal” like everyone else and live my life until I’m old.

But, my normal turned out to be quite different from the average person. My normal turned out to be taking several different medications several times a day and visiting the doctors frequently. My normal also became growing accustomed to being in the ER or hospital for different procedures and surgeries.

I vowed to myself never let this illness get the best of me, never to use it as a crutch, never let it hold me back from achieving my goals and I became determined to never lose my life to it.

Lupus is an auto immune disease that can affect any part of the body. Doctors and researches don’t know why the white blood cells (meant to protect our bodies) detect healthy tissue as being harmful to the body and attack that tissue(s). It affects almost everyone differently although we may have similar symptoms. For me, it has damaged my kidneys through the years during periods of “flares” when the illness is most active, likely triggered by stress, getting the flu or a virus, and other factors. It is not known how someone acquires it, nor is there a cure yet. Thankfully it’s not contagious nor malignant, but studies have shown it’s possible that it can be inherited.

Through the years either Lupus itself and/or the side effects of the medications taken to keep it under control altered my body. When I was 23, I had to have a total hip replacement because the cortisone steroid Prednisone ruined my hip joint to the point of me always being in pain.

In 2004, I had a terribly bad flare and had to have chemotherapy treatment with a drug called Cytoxan to try to taper the flare. Because my immune system was weakened by the treatment, I developed additional illnesses and other medications were given for those, including an increase in Prednisone again. My whole physical appearance changed to the point I didn’t recognize myself and I didn’t want to be seen in public. For a while I went into a deep depression, but I willed myself out of it, knowing if I remained in that state, I would never get better.

During the time of that particular flare, my kidneys had failed and I ended up on hemodialysis (hooked up to a machine so it can filter my blood of toxins, something my kidneys stopped doing) 3 times a week. Deep in my soul, my total being, I believed that I wasn’t going to end up being on dialysis and needing a kidney transplant. And by some miracle after approximately nine months, my kidney function returned and I no longer required dialysis treatment.

But because my kidneys were never really working to its full capability all these years, my body chemicals were off. Through the years, I didn’t realize that a calcium deposit started to grow on my TMJ (the joint in our head that connects our skull to our jaw) and the pain got increasingly worse as time went by. Finally in 2011 after many tests, it was discovered that the growth was protruding through my left ear channel and the pain got so bad that I couldn’t function without some type of pain relief. So after clearance from my nephrologist, I had a craniotomy (opening my skull to expose my brain) to remove the growth which was discovered to be the size of a golf ball. It was worth going through that surgery, because I no longer live in constant pain and recovery was quite fast.

Because I’ve been taking immune suppressant medications to stay in remission, my body was not able to stop cancer cells from developing. Therefore in January of 2013, I had a total hysterectomy to remove everything that would likely lead cancer cells to develop into cervical or uterine cancer.

Last year in 2012, my kidney function started to decline again and finally failed on me so that dialysis was required again, which I resumed in August 2012. Prior to this happening, I attended a kidney transplant class and learned the my blood type of “O” had a waiting list of six to seven and a half years before a donor was available. Shocked with that prospect, I realized I had nothing to lose if I went ahead and tried to get a living donor on my own.

So in April of 2012, I posted a video blog on Facebook asking my friends to share my video with all of their friends to spread the word that I was looking for an “O” blood type donor. Four people responded and I chose one who has Hawaii ties, but now lives in South Carolina.

To defray some of the expenses for my transplant, as it will be held at UCSF (University of California in San Francisco Medical Center), my family and I planned and held a benefit concert to raise monies for costs not covered by medical insurance. It was a fun event and a nice amount was raised.

At this point, while I’m waiting for the approval to schedule my transplant, I’m on hemodialysis treatment three times a week, 3 and ½ hours each treatment. It’s gotten increasingly hard on my body after each treatment, leaving me either exhaustion or having cramps in my feet and legs (from too much fluids being removed) or both. My energy level is at its lowest and I take advantage of the times I’m feeling somewhat good to enjoy myself. I take the opportunities I have and run with it, and I also pray for patience until my transplant.

As my journey continues with this life with Lupus, I’m excited and anxious to get my new lease on life with a new kidney. My family, friends and Facebook friends have all been so supportive and I hope to one day share my story as a motivational speaker to encourage others to live life to its fullest despite having an illness that is life altering. I’ve learned to take full advantage of what I can do and not dwell on what I cannot. It takes more than a positive attitude to live a fulfilling life with Lupus. Aside from having moral support from others, it takes love for self and action to make things happen. And that is how I plan to continue to live a long, productive life.