Dear Everyone,
I’m definitely writing this out of frustration. First of all, I want to be clear that I’ve never claimed to cure my daughter’s Type 1 Diabetes. Those of you who know me, or have read my entire blog, know that I started this to document our journey through this disease. Lily is in fact, on insulin. Secondly, we do struggle, we go through what all Type 1′s go through from time to time, it’s not easy, it’s not fun, it’s not what we ever wanted for our daughter, but it’s our reality. If I could change it, I would. But if I can make it easier for her body to work correctly, I will do what it takes.
Despite all my efforts to share and post what we’ve gone through, I continue to get nasty letters from people chastizing me for claiming to have a cure for Type 1. Others (like the most recent comment) tell me how ignorant I am and that my daughter must be a Type 2 Diabetic.
As far as I know, my daughter is Type 1. Unless someone knows more than the doctors at Vanderbilt, I don’t think they have any right to comment on my daughter’s diagnosis. Her antibodies are present for Type 1. She is insulin dependant, but still makes her own from time to time. She’s not fat, and as far as I know, her diabetes is not reversable….at least, not yet. However, this does not mean that I will give up hope. I am doing the best I can do. I’m not here to sell a cure, or to sell ANYTHING. I don’t make money from this website and have no alterior motives other than to share and get support from others who can tell me what they are doing to help their own Type 1. As far as I’m concerned, we are all in this together and for anyone to get upset about my daughter’s eating habits is completely obsurd in my opinion. I would be more apt to believe that one should get upset over a child gulping down a nasty donut than one who prefers to eat veggies and fruits for the most part.
Sorry for the rant here, I just wanted to say that I am not promoting a cure. I’m hoping for one. I’m not trying to sell anything, I’m trying to help my kid. So thanks to those who have given me support here. To the rest, I hope you will read EVERYTHING before you judge me or my family.
Love you all,
God Bless
Jayne
Hi, sweetie. Keep on doing what you’re doing. I’ve been a Type 1 for almost 50 years and I don’t do anything the way the ADA says I should. I also don’t have any complications and have an A1C that’s near normal, even after 48 years of being a Type 1 on insulin. As a Naturopath, I often share my approach on my blog and with others during speaking gigs. In the beginning, the anger expressed when I’d happily share how I had cut my insulin needs in half would shock me, now I expect it. I’ve learned that people’s anger isn’t directed at me, it’s directed at their illness. They’ve bought into the lie perpetuated by so many endos that diabetes is debilitating and that it destroys one’s ability to live a normal life. For anyone to “dare” to consider living life to the fullest with T1 scares the hell out of the folks who chose to give up. Their anger isn’t directed at you, it’s directed at their belief that they can’t live the life they want to. I didn’t choose to believe that and never will. Teaching your daughter to believe she can do anything she wants to is the most precious gift you can give. I travel frequently, ride a motorcycle (as the driver, never a passenger), and do anything and everything I want to. Diabetes has NEVER stopped me from doing anything, and it needn’t stop your daughter from doing anything, either. My heart breaks that you have to bear the comments and nastiness I hear every day, but you seem to have a good outlook. Doing what’s best for your daughter is the only thing that matters. The comments of others who have not taken time to consider research that doesn’t fit the mainstream paradigm are meaningless. Try not to let them get you down. Keep on doing what you’re doing! Fifty years from now, when your daughter has zero complications and never lets diabetes stop her from doing anything, you’ll be glad you ignored those comments. I promise.
Hi Jayne,
My son is experiencing an awesome honeymoon. He was diagnosed 11/2010. He was also off of insulin for over 6 months. Right now, he’s only taking about 1 unit 3 times a day. He is only taking fast acting insulin. I keep his diet tight as you do. I commend you for all that you are doing to keep your daughter healthy. People need to realize that each person is different even with type 1 diabetes. Unfortunately, some people have more brittle diabetes than others. I caught my son’s diabetes very early which has helped. I know that my son will eventually have a pancreas that peeters out, but I will fight it to the very end. Chin up girlfriend – you’re doing an awesome job!!!!!!
Thank you, Nikki…that’s great! I would love for Lily to be able to be on only one unit…but as you said, I believe hers is also compounded by her mitochondrial disorder. Best to you and I hope you keep us posted on his progress!
My son has t-1 and I want a cure!! The stuff I have heard from people on this site, sounds to me like people living in denial or lacking knowledge of this horrible disease. It breaks my heart and I worry about children with t-1′s health, if their parents do not listen to their diabetic educators or lack understanding of this disease. I assure you, I am not being nasty or judgmental, I am worried and sadden. As Lily ages she will not make any insulin at all and there is nothing that anyone can do about it and the amount of insulin that she needs has nothing to do with “how bad she has t-1.” You either have t-1 or don’t! Antibodies are attacking her insulin producing cells and eating healthier is not going to stop it, nor did bad eating cause it. This is a horrible disease. T-1′; face a lot of ignorance and discrimination and I think a lot of t-1 moms get upset by blogs such as this, since it appears to give validity to some of the false claims out there about this disease. We will never get a cure unless we get the truth about this disease out there and we will not be able to do that when the very people with it, do not understand it themselves.
I’m not quite sure why you would think people are ignorant. I’m also not sure what the problem is when someone decides to choose a healthy lifestyle over one that causes disease. Diabetic or not, one should be commended for attempting to eat healthy. However, for some strange reason, the mere suggestion provokes anger in those with diabetes or parents of diabetic children. So as far as your worry, I’m not quite sure how to address this. Are you worried that our children may eat food that is much to healthy for them, thereby preventing further disease in the future? If so, why would this be a worry to you? My daughter is on insulin, so are others on this site…can you please further explain the root of your worry? Thanks so much.
dear jayne,
i too get continual nasty emails about how i am ruining my son, how he is not living a normal childhood and i am filling his head with nonsense. i let it get to me sometimes. i think i have posted about this before. well my friend, look for the good, all the good that you hear from people, soak it up and let the rest go down with the bathwater.
i am so proud of you and lily. i am proud of you going against the grain and following your mommy intuition. keep up the awesome work your are doing.
Hi everyone!! Thank you for your comments. They all mean so much to me. It helps to know that none of us are alone in this!! I know that I should keep it positive here….we all have a lot to deal with each day. I am usually okay with criticism. I’m used to it. But I guess it was one of those days and I just finally had to say something. However, you are all correct in telling me I should ignore ‘them’…I should, and I will in the future. There’s no use in arguing with someone who is bent on believing whatever is convenient. There is so much more to focus on. So thank you for the support, as always, and I will keep focussed on being healthy, happy, and taking care of my girls. Love you all. Jayne
Thank you Alix. I definitely need these reminders. I tend to look at the bad, but I’m starting to let it all go and just leaning to be bold and not worry about what others think…including the school or others on this blog who want to criticize what we do without even knowing us or knowing what affect food has on my daughter’s blood sugars. We’ll just keep pushing on, together, knowing we’re doing our best!! Love you friend.
I am sorry you have to go through this…it’s not like you don’t have enough already.
My husband and i have received the same kind of treatment from my daughter’s endocrynologist because she is gluten free but not celiac. We have her on a gf diet..her A1c has gone down to 6.8, a non-diabetic level. She is still type 1…but we, like you, will NEVER stop trying to help her.
keep up the good work!!
Catherine, that’s so great! Yes, I get the same reaction from the school nurse. She is constantly putting in her two cents and making it clear that her opinions are in conflict with my own. I don’t think she does it to be mean, but many medical professionals are very misinformed about nutrition. My aunt (by marriage, not blood) was a type 1 diabetic, she went blind and had her leg amputated before she finally passed away in her seventies. She was a nurse. She did what the doctors told her to do. She was not healthy. So I want better for my daughter…like we all do. Thank you for your encouragement!!
The folks who are criticizing are also talking that way on other blogs, to their coworkers and to their families. Its unfortunate. I enjoy reading your blogs immensely. My husband is 40 and has had type 1 since he was four. We are on a journey ourselves with raw foods. He went from 40 units of insulin a day and he is now down to 9 and some days he only takes 2. It’s been miraculous but the journey has had it’s ups and downs and disappointments but more miracles than anything. I will continue to enjoy reading about your family’s journey. Please don’t fill your mind with the negatives. You are on an awesome path!!!
That’s great Kelly! You never know what kind of other problems he will be avoiding because he’s chosing a healthier path for himself!! Thank you for sharing. His experience gives me encouragement!
Thanks for sharing that. it gives me hope.
You are doing a great job! We may not be able to “cure” or “heal” our children with Type 1, but we can use the gifts and wisdom God has given us – whether it’s Ocotea oil, bitter melon, or going Paleo – to make their lives healthier and more balanced. Press on and peace with you!
Thank you.:)
hi jayne,
i’m type 1 also and take a very natural approach. i’m sorry people got so inflammatory. i tried many things when i got dxd in 2008 (i was dxd later in life at the age of 27)ie, niacinamide, gynema sylvestra, gluten-free. of course, i’m still diabetic.
the only thing i could think of that might help have some perspective on why people got so outrageous was in your “our story” section having used the word ‘healing’ a lot and ‘healing journey’ might’ve caused some [misunderstanding] people to read further into it. also, so very many people want a cure and what you are doing to even just assist your daughter in living healthier with the disease requires a lot of dedication—probably moreso than what many are willing to try and would like to see come as an “easy cure”. therefore, maybe when they read your blog and it’s excellent research and suggestions and attempts, they get mad because they know it’s hard to do all that (ie, clean up one’s diet, research other options for changing the way one lives on a daily basis) to see results. *sigh* it’s so difficult. it’s hard enough, but then you’ve got people name-calling! ugh.
anyways i was curious also, did lily go insulin-free for a year shortly after her diagnosis (ie, due to also having some residual beta cell function that you found a way to temporarily maintain), or was this a more recent occurrence? thanks for your blog!
Hi Emily, Lily was on insulin for a week after her diagnosis. We cleaned up her diet immediately (although we are still in the process of learning and moving more toward vegan/raw), and her blood sugars stabilized immediately. She ‘honeymooned’ for a year and a half. Near the end, she had begun adding corn to her diet, and we think this may have flipped the switch in her pancreas. That’s when the honeymoon ended. Her diet is not perfect…she is a teen…she has her moments with her friends where she will have a treat here and there…but for the most part, she is really good. When she ‘cheats’, it’s usually with either mexican (corn, not flour) or with frozen yogurt. The wheat and grains have always given her random highs throughout the week in which she eats them…so we know to abstain. So her diet is not perfect, but we are moving towards it. The most important thing to me is that she learns what foods do to her body…she can tell now because she is used to eating so healthy now, comparitively speaking. She knows that she feels sick after she eats junk, and this is better than me telling her NOT to do it. She can see and FEEL the results. So I’m hoping that she will continue on this path and maybe one day help others do the same. And btw, there are days, still where she does not require a shot. But at this point, I’m allowing her to test and learn. So far, so good, she is really trying to make healthy choices. Thank you for your comment!!
I am sorry for this craziness!
I know that Lily has Type 1, as well as I know my daughter does!
Who would fabricate this sort of story for her life or her daughters life…really!
Keep up your good work mama…
Thanks Caroline.
Ignore the people criticizing you. Most of them are just looking for a pill to pop – waiitng for the JDRF to come up with one, so they can all be “cured” and go back to the same old eating habits that got them here in the first place. The idea that a change in their diet and lifestyle could actually benefit T1′s is just something that really, really upsets and angers these people for some reason!!! Very strange.
I agree. It’s strange how people always criticise most what they understand least. Thank you for your comments. It’s good to know that there are still sane, intelligent people who ‘get it!!’
As a mother of a type 1 diabetic, I feel frustrated for you. I have read your site and for the life of me, do not understand how anyone could come up with the conclusion your daughter is cured. Although, I pray she will be some day. They simply did not read the site.
I enjoy reading your site, in fact, I could have written it myself about our journey with that dreadful disease.
Praying for a cure,
God Bless your family.
Thank you. I’m praying too. I’m just taking each day as it comes and trying to teach her good habits so she can avoid future complications. Best to you and your family.
these people don’t want a cure they are just filled with hate
Well, I am not sure if they’re being hateful, or just truly mislead. They probably think that we are not giving insulin to her or something. I know that there are a few cases where parents did not give their child insulin thinking prayer would heal them, and the child passed away. If someone were to sit and read my blog from the beginning, they would see that this is not the case. No one on this blog (that I know of) has withheld insulin from their child when needed. We are just combining the healthy eating with insulin when needed. Sometimes I wonder if all the crud people eat hasn’t contributed to the gradual demise of their braincells. Thanks for the comment!!