People of HealthUnlocked | Meet Jane - HealthUnlocked Blog

HealthUnlocked Blog

96,769 members203 posts

People of HealthUnlocked | Meet Jane

MarketingHU profile image
15 Replies

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. "

----

Jane has given us consent to share her story.

----

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

Written by
MarketingHU profile image
MarketingHU
To view profiles and participate in discussions please or .
Read more about...
15 Replies
lupus-support1 profile image
lupus-support1

Jane, your story is inspirational!

As a patient, we can prevent from feeling out of control & powerless, by turning to educating ourselves. We know our bodies better than any doctor. My consultant used to tell his doctors: "Listen to the patient"!

Wishing you continued good health!

With good wishes,

Ros

LorraineLouise profile image
LorraineLouise

Jane,

There aren’t enough words to describe how your story has touched my heart. You are amazing,!!! You go girl!!’

My wish for you is to continue feel as good as you do , and continue to inspire others , as you have inspired me.

Many Blessings!!!

Lorraine Louise

Zest profile image
Zest

Jane, I would also like to wish you continued good health, and I am inspired by your story - and all you've achieved against these challenges that have come your way.

With best wishes, and all the best for the future, and it's great that you're helping so many people - I hope the project with the American Association of Kidney Patients goes really well.

Zest :-)

ddmagee1 profile image
ddmagee1

What a remarkable story, of overcoming and perseverance! Your story reminds me a lot of my wife’s struggles, with weight, diabetes, kidney disease, and heart failure. I absolutely hate that term ‘morbidly obese’! It has such a negative connotation! Congratulations on overcoming so much, and thank you, for sharing your inspiring story, Leilah HU! Keep up the outstanding work!!

M1tz1 profile image
M1tz1

Your achievements are praiseworthy and inspirational, Jane. Congratulations on your courage and your endurance. With loving wishes for the future,

Mitzi

Izb1 profile image
Izb1

Such an inspiring story Jane. Well done to you for getting out there and arming yourself with the knowledge you need to overcome your difficulties. I suffer from rheumatoid arthritis and bronchiectasis and have started a course of methotrexate a couple of months ago, I really didnt want to go onto this medication but the pain became too bad, I am not sure its working yet but will give it another month. I wish you well x

PLASEM profile image
PLASEM

That is great You did it and it is not easy congratulations

jillygirl profile image
jillygirl

What a wonderful inspiring story. Please thank Jane for sharing and wish her all the best with her future life. :)

san_ray70 profile image
san_ray70 in reply tojillygirl

Thanks jane for sharing your journey, I have a friend, she is dissabled, she is overweight, but unlike you she does not worry about her health. She is the same age as me, but I am fitter than her, she says she has lost weight on and off and she has had enough. People such as my younger sister in law ask why I am bothering to lose weight at my age. I feel better and am not out of breath any more.

Megbird profile image
Megbird in reply tosan_ray70

Dear San-ray listen to your body all the time. Our nearest and dearest can be very cruel when they know that you are trying so hard to sustain a stable environment around you. I know that weight loss is the most wonderful feeling. It makes you feel young too. Keep going, Jane's wonderful story says it all.

Cleanliver profile image
Cleanliver

Thank you Jane for sharing your story. My aches don t seem so bad now. I admire your determination to go on when life threw you so many obstacles. May God bless you as it seems he already has.

kycmary profile image
kycmary

Yea Jane fantastic story congratulations on your come back keep it up love ya Mary

spicecat98 profile image
spicecat98

Your story is amazing! I am so happy you turned yourself around. I can't believe the doctors could not help you, but yet I do. I hope you have continued good health!!

Megbird profile image
Megbird

This is incredible journey and thank you so much for educating us. Thank you once again.

rapture4u profile image
rapture4u

You have strong will power and are determined. Well done and good luck for the future.

Not what you're looking for?

You may also like...

People of HealthUnlocked | Meet *Sally

In this week's instalment of our user stories, *Sally talks about her weight loss journey. Have...
MarketingHU profile image

People of HealthUnlocked | Meet Keith

Hello lovely people, just want to take a moment to thank everyone for sending in their stories,...
MarketingHU profile image

People of HealthUnlocked | Meet Max

Happy Friday everyone! We have a treat for you this week, as Max from our Sleep Matters...
MarketingHU profile image

People of HealthUnlocked | Meet Nina

Happy Monday everyone! This week in the People of HealthUnlocked series, we're sharing Nina's...
MarketingHU profile image

People of HealthUnlocked | Meet Lesley

Happy Friday everyone! This week in the People of HealthUnlocked series, we're sharing Lesley's...
MarketingHU profile image

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.