365 Days.
No Protein Spill. No Meds.
Praise God!!!
What a wonderful day! To celebrate one year of FULL REMISSION! Changing your diet and changing your life can be hard. Mostly though, it's inconvenient....and people do not like to be inconvenienced. However, I think the momentary inconvenience pales in comparison to the lifetime of better health one receives. I know everyone may not have the same success with life change as we have had. I do know this though, IT WILL AT LEAST HELP EVERYONE who gives it 100%. How could eating and living better Not help? That's the catch though- most people are only willing to try "a little". I know from experience that trying to go gluten free even "mostly" is not enough to cut it. It has to be 100%! I talk to people all the time with different autoimmune problems, who want to know what we did. As soon as I give them the scoop on diet change, they lose hope. I can see on their face they think it's not for them, because it seems like too much work. But anything in life worth having, is worth fighting for, and your health should be at the top of the list! It can be upsetting how many people I meet that just want a quick, easy solution. The body is so complex, nothing about it is simple. It takes time, energy, sacrifice, research, and patience to try and figure out what may work for you. And my heart aches for those who DO put in the effort with little results. But, you never know what may or may not help you until you try. So be brave! Give better health a shot, you are worth it!
Below is our story of encouragement. I made the video because when Emma Kate was first diagnosed I did what many parents do...I looked up things about it on the web. And I looked at youTube videos. And EVERYTHING I saw was so sad and very discouraging. I wanted to see a story with a happy ending. A story that did not end in a transplant or years upon years of high dose meds with serious side effects. Don't get me wrong, I know that is a reality for many kidney patients. But my heart needed something to give me hope. Something that said it is not always that way. And I am overjoyed to be able to have made that type of video myself. That is the purpose behind it; to lift spirits by presenting a different approach to treating NS or FSGS. May you be inspired and able to make your own encouraging video one day! That is my prayer! (For some reason the video is not showing up on mobile devices, but will work from a regular computer.)
We just celebrated Emma Kate's 5th birthday, and we took her to Disney World! We all had a blast! I am so excited to say that WDW was SO wonderful about food allergies! Every place we ate had gluten free options. And not only that but it was SO GOOD! They were super nice about making sure you were taken care of and that was fantastic. We were also able to bring our own food into the park, and that was wonderful.
Wow! I just found your blog and have been reading through it! Your girl is so sweet and I am SO happy she is in remission! I have to tell you, it is weird for me to read through this because I can imagine my mom writing this blog when I was little. I was diagnosed with nephrotic syndrome at 18 months old. Went into remission around the same time as your sweet girl. I would love to say I have been there ever since but I haven't. But I am 30, married, and have 2 beautiful children. It is a lifelong battle but you are in this fight with your daughter and it is AMAZING! God bless you guys!
ReplyDeleteHi, Found your blog while trying to search for herbs or similar helpful to autoimmune system. My son was diagnosed with Minimal Change (a nephrotic syndrome) disease almost 8 yrs. ago now (when he was 5). He "only" relapses once a year the past 2 or 3 years, but is becoming more & more resistive to going on prednisone. (I don't blame him at all!) He actually is registering protein in urine right now. We keep watching numbers & hoping, but I may have to call Dr. soon. I would love to talk with you about your successes (& struggles) regarding NS & your change in diet/lifestyle. Is there a way to contact you? I could give you my e-mail ...just a bit nervous about 'publishing' it. Catherine
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI think I will share this blog with my son & see what he thinks. He is old enough & (maybe) motivated enough to make serious "food changes" if it means be healthier & staying off prednisone. Hope you are all healthy & having continued success.
ReplyDeleteGod bless - Catherine (again)
Robecanater,
ReplyDeleteThank you so much for your kind words! I'm am always curious about how people have turned out who were diagnosed with Ns as a child. That's wonderful your mom did so much for for you! I'd love more details on your journey.
CC thanks for posting! That's great your son is an infrequent relapser. Please do show him the blog! Maybe he would be encouraged that if diet change worked, he wouldn't have to take it again. That would be awesome :). Please feel free to email me mkcook07@yahoo.com
ReplyDeleteI received this email, and just wanted to post on here for others to be reminded they are not alone. And I love hearing from all of you!
ReplyDelete"Hi,
I wanted to post this on your blog but unfortunately it won't let me.....
Thank you so much for sharing. That is great news that your precious girl is one year relapse free. Watching the video brought tears to my eyes as seeing the similar paths we have been done. Brought back many memories. Our son is 3 and was diagnosed with NS last year. We are battling our 3rd relapse and unfortunately he isn't responding as well as he did in the past. Sitting here waiting for our lab results from yesterday is mind boggling....but reading your blog has given me hope. Thank you again!"
I have been searching the Internet for sometime now looking for something a success story on nephrotic syndrome and nothing ! Until now your daughter is beautiful! My daughter was diagnosed with minimal change disease at 2 years old she is now 4 she hasn't had a relapse for a year she has been on tacrolimus for one year now and we are just now starting to ween her off medication completely she hasn't been on a strict diet and I would like to start doing so especially since she is going to be coming of medications and I what to start her doing this now so she can be used to this lifestyle as she grows up I would love to talk to you I have soany questions and I would love to know your diet plans my daughter is so picky about food please email when you get a chance I would appreciate this so much God bless !
ReplyDeleteFor those people who are celiac disease sufferer and maybe reading this, I find it hard that people are still ignorant when it comes to celiac disease.
ReplyDeleteMy journey and diagnosis with celiac disease began with headaches, I gained over 50 pounds after my diagnosis. my symptoms included stomach pain, constipation, and generally feeling uncomfortable, muscle pain, bouts of fatigue and depression, stomach aches, nausea, and frequent trips to the bathroom. I endured several misdiagnoses and treatment regimens, Migraines started at age seven, I can recall suffering as a child, I grew up thinking it was normal to have daily stomach pain, headaches, though stomach problems ran in my family, but no one felt as miserable as I did on a daily basis. I fell asleep in my clothes without eating dinner not knowing how my body would react, I had become afraid of food.
I felt a moment of relief hoping that, I am free from this ailment, and I remind myself how lucky to come across Lance Justin's herbal medicine which is able to control my disease. I promised myself that I would stay strong and not sneak food that would cause me any harm again. The only thing I wanted was to feel better. I’m proud to say I am celiac disease free. You can also contact him through (ronniemd70@gmail.com).
ALL THANKS TO DR JOHNSON WITH HIS HERB I WAS CURED FROM A TERRIBLE NEPHROSIS DISEASE BY DR JONSON
ReplyDeleteIs my pleasure to comment on this site and I thank the admin of this site
for his/her great work so far.
I really don’t know how to thank Dr Johnson
for helping me get cured for over 25 year of suffering from
this terrible Disease, this Illness started when I was 22 year I thought there was no cure, but even get worse as days went by,i have tried all western drugs prescribed by doctors but to no avail I lost total concentration,I
came across DR Johnson contact through a headline news on internet about
how DR Johnson have help so many people to get cured of various Diseases, and so many other with similar problem I contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my husband paid for me, I always take the medicine every morning for One Month and his medicine was able to restore me back to normal I also went for a text, there so no more loss of protein from the plasma into the urine due to increased glomerular permeability, and now am very much okay without any side effects whatsoever If you have any Health problem you can contact him on his email address drjohnson958@gmail.com
Unbelievable, I remembered I was once here in need of help on how to go about the problem of Nephrosis I was having, I must say those years was so frustrating, the experience was something outside the world of being normal,my wife had to join me in search of various kind of help,and the search lasted for 1 year and some months and like a dove sent from heaven, a friend of mine referred me to Dr Johnson a specialist with a difference full of knowledge, with his vaccines/medications and his advice on what to stay clear off and how to approach the problem, after one month of using his product, I was made well, I never believed there is a cure to Nephrosis, but now am a testimony.
ReplyDeleteAny one with such problem can contact The Doctor on his mail address at drjohnson958@gmail.com