Hello friends, today's story really moved me. I have so much admiration for Jane, who talks about her rollercoaster journey with weight management and chronic pain. Hopefully, her story below will inspire one of you today - as it inspired me. Don't forget to leave Jane a lovely comment below.
"My story begins with being a big lady all of my life. It never stopped me. I play tennis three or more times a week, swam regularly, hiked and biked and maintained my house and gardens. But all standards, I was morbidly obese, a term I despise. I never thought of myself in terms of weight and I did not marry myself to the scale. I remained at a certain weight most of my adult life.
About 19 years ago, I went through a breakup of my marriage of 27 years. It was not a good marriage, but I lived with it. The divorce was not pleasant and it was a complete change for me. I was on my own for the first time in my life. I purchased a home in my own name and moved my dogs in. I was deliriously happy.
I am not sure if all the changes triggered something, but for the first time in my life, I was having medical issues. The first one was the discovery of five blood clots, one very close to my heart. I was told I needed immediate surgery. However, through a miracle, they discovered when they scoped me as I lay on the hospital operating table that the clots were gone. I remained in the hospital for 11 days as they were afraid the clots would appear somewhere else. They never returned. In prevention, they gave me massive doses of blood thinners, which lead to all sort of female problems. The cascade was beginning. It turns out that I had a disease called Factor V Leiden, which is an inherited disease which causes the blood to clot. I was put on blood thinners for life.
I was becoming anaemic, so they gave me an ablation and ended my monthly. But I began to notice a constant ache in my joints, especially an ankle that I had severely broken when I was 16. But it was not the only place I hurt. I was constantly told that it was because I was fat. I had to stop my tennis and other activities as my body began to hurt everywhere. No one would proceed with any testing because everyone was sure if I lost weight, my issues would disappear. I also had presented with what they thought were hives and those were attributed to stress.
But life was not all gloom. I met a wonderful guy and in time, he and his 13-year-old daughter moved into my house. We became a family and I had the daughter I always wanted. I had gone back to school and finished a lifelong dream of completing my Bachelor degree and then went on to complete my Masters in education. My career was doing well and I had been promoted to a senior-level position.
But my aches continued and so did the spots. When my hands turned into claws, they finally tested me and found I had severe psoriatic arthritis and psoriasis. The spots were how my body presented psoriasis. I was put on a huge dose of prednisone, methotextrate, and ibuprofen. It was before the connection to those drugs and kidney disease was well known. Heck, back then, many doctors had no idea what was Psoriatic Arthritis (PsA).
After about six months in, I noticed I was urinating blood. My doctors said it was from the blood thinners. I was now on a maintenance dosage, not anything extraordinary. I also felt terrible. My lab result showed my A1C was 13. I never had a problem with diabetes, and prior to this, my glucose ran low…much to the dismay of the doctors. I also found out that my kidneys had crashed from all the medications. I had rebounded to a GFR of 41. It was never to go up after that.
Through the next 8 years, I did well on one biologic. Then it failed as they often do. I then went through a series of 7 different biologics in three years in an attempt to find one that worked. I started to put weight on. I felt terrible and was having all kinds of issues with various health problems. Again, the main answer was “lose weight.” I was put on diabetic medications, including long term insulin which can produce weight gain. My A1C was climbing as was my weight. My kidney function was also slipping and my GFR declined at least 10 more points. Then I was put on a biologic that did not work; it caused more weight gain and the pain level steadily increased. I had put on over 40 pounds.
Finally, in the fall of 2017, my kidney function slipped to stage 4. I decided to retire in January 2018. It was the best decision I ever made. I also had switched off the biologic that was making me sick to a new one. My A1C was back up to 9, my GFR was down to 24, I was anaemic, and my other blood labs were terrible.
I met with my nephrologist in April, and she said to prepare for dialysis within six months. I was crushed and depressed. I decide to take the bull by the horns and become educated on kidney disease. I read everything I could. I met with a renal dietician and then began studying what foods are good for Chronic Kidney Disease (CKD).
I joined HealthUnlocked. I took classes and webinars and any education I could. I eventually became an ambassador for the HealthUnlocked kidney forum. I got trained to become a peer mentor through the National Kidney Foundation and now coach CKD patients via phone calls. I work on menu planning and will be presenting at the next cooking class sponsored by NKF here locally. I am an ambassador for the American Association of Kidney Patients and will be working on a project for them in the upcoming year.
By becoming educated, I took control of my health issues. I changed up my eating habits and lifestyle and was able in a year to lose almost 40 pounds. I am back to the weight I had for most of my adult life. I lowered my A1C to 5.9 and have maintained it and have been able to reduce my medications. My blood levels have all improved and I am no longer anaemic. I feel fantastic and have more energy than I have had in a very long time. My nephrologist calls me her poster child because I stabilized my kidneys and have maintained my GFR and creatinine levels for over a year and a half. "
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Jane has given us consent to share her story.
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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at communications@healthunlocked.com to learn more.
xo
Leilah, Marketing Lead at HealthUnlocked
