Rebecca was diagnosed at age 17 with renal disease and told she wouldn’t live past her 21st birthday. Now in her 40’s, she shares her journey living with incurable disease and the lessons this has taught her.
1. Tell us a bit about yourself!
I am a mom of a soon to be high school graduate and wife of 25+ years. I live in Florida and love Disney. I am also a chocolate addict, foodie, wannabe world traveler and tea drinker hence the name of my blog Teacups and Fairy Tales. More importantly, I am a survivor. I am a woman living life fully with Renal disease and Multiple Sclerosis.
2. When did you first start having kidney issues?
I never had any signs that my kidneys were failing. Up until I was 17 I was a very healthy kid. Then in May of 88, I stayed home from school due to feeling rundown. By that afternoon I was swollen to 3x my normal size. That was when my journey began. It was pretty scary for a teenager to be told your body is shutting down.
3. What was your formal diagnosis?
Membranoproliferative Glomerulonephritis which later became a diagnosis of Chronic Kidney Disease. A polite way of saying your kidneys are shot. I was told I wouldn’t live past the age of 21.
4. How did you feel when given your diagnosis?
I honestly don’t think to this day I have fully processed it. At 17 when diagnosed my only thought was I had to be strong for my parents, then my husband and now my son. So yeah not sure if I ever really fully processed everything. I live life moment by moment and, day by day. I haven’t even really talked about my health issues until this past year.
5. What treatment did you undergo?
Unfortunately, there is no treatment for what I have. I hope one day there will be but as of now nothing. We simply take it one day at a time and treat symptoms as they occur.
6. How old were you when you were diagnosed with MS?
I was 24 when I was diagnosed. It was 7 years to the day after being diagnosed with renal disease.
7. I’ve heard that no two cases of MS are alike. Can you explain to us what it is like for you living with MS?
That is true. For me, my symptoms showed up kind of like having food poisoning. I couldn’t keep anything down and it led to weakness and dehydration. I later slipped into a coma for 2 weeks. The doctors told my family I wouldn’t live through the weekend. My body had shut down. I was on a breathing tube, IV’s and other machines. But I am a survivor and I made it through the weekend. After waking up it took me a year to regain mobility. Today I still live with some weakness, double vision, and incoordination. My son says I look like a drunk walking some days. My symptoms come and go. No two days are alike.
8. What have been the biggest changes in your life since your diagnosis?
The biggest change for me is a loss of freedom. Since I can no longer drive I have to rely on others to do a simple task like going to the store or just for a ride. The loss of freedom is a biggy for me because I like to go and do things and I can’t without someone being available to drive.
9. Where are you now both on your journey with kidney disease and MS?
My kidneys as slowly shutting down but it is a slow pace. My MS is holding steady for now. There are good and bad days. I like to think the good outweighs the bad.
10. What would be your advice to someone who has been recently diagnosed with MS?
Take it one day at a time. Celebrate the good days and know the bad won’t last forever. Try to be present in every moment of every day. In the words of Annie, the sun will come out tomorrow. But most important don’t let anyone tell you that MS defines you. defy the odds.
11. Where do you go to for support?
I have some really great online friends that I talk to when things get rough. They are very supportive and don’t let me throw pity parties much. In real life, I don’t really have anyone as most people find being around me hard as I remind them of how fragile life can be. But I like to think I have inspired someone somewhere to go out and live life.
More about Rebecca
To find out more about Rebecca and to follow her journey, please visit her website Teacups and Fairy Tales. Rebecca shares her love of travel, movies, music, food and much more.
Thank you so much Rebecca for sharing your health journey!
Do you guys have any questions for Rebecca? Pop them in the comment box below.
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