"Sjogrens may be a life saver". I don't think this sounds unusual as I know many people who get an illness feel the same way. Yes I know, who wants the symptoms, they suck, big time. I don't doubt for a minute that Sjogrens is the result of my lifestyle. Looking back now I see the collision course I was on and just maybe I am lucky its only Sjogrens and not something a lot worse. What was back then? A sugar addict. What I know now is that I am no different to any other addict. I have taken this sugar addiction on and come out the other side with great knowledge that I wish everyone knew about sugar. If you think that sugar can't make you sick you better start researching because there in could lie your biggest wake up and also your cure to many ailments.
Sugar was just one of the many lifestyle, nutritional changes I had to conquer. The other biggie was cortisol. It races through your bloodstream when you stress. I don't need to see a doctor to know my cortisol levels were through the roof I can just look back at my story. An example: running into a glass door at a mall as I was frantic that I would be late to pick my child up from school. I broke my nose but still picked my child up and drove with a bleeding nose to drop him of at his cricket match. I was super mom. That to most people would be a red light to slow down but not me. There was no end to the crazy, when was I going to get it. Sjogrens brought me to my knees with fear and sadness but it made me stop and look at how I was living.
As I said in one of my last discussions that the gluten, sugar and diary free diet is doing my head in, it still is but the rewards are coming, s.l.o.w.l.y. I am getting a bottom row of eyelashes again. I sleep well every few days. I wake up occasionally and feel like my head is clear and refreshed. I found the most amazing new ingredients to cook with and plan to grow my own vegetables but that will come when I have the energy to make a veg patch. My gums aren't swollen and my lips don't look like I just had an overdose of botox. The dryness must be improving. My taste and smell are returning, the loss was soul destroying. My eyes are only dry and painful at night. These are huge improvements in a short space of time. I am still though plagued with fatigue and brain fog but there are those great days when its not severe so there is light. I am not following the diet 100% as I have decided that I am saying a farewell to each of the offending items and its got to be at my pace as this is lifestyle and not a fad diet. Its cheese at the moment and I am just not ready to wish it well. The reward is as I eliminate more from my diet symptoms will also improve.
I realize now that these changes I am making is what it means to love yourself. Eating badly, stress and others is not loving yourself. I disrespected and was disconnected from my body. I love this new relationship I am cultivating with my body. It sends subtle messages and if you listen you know what is wrong or what it may need. 'Accept what is and stop trying to change everything Cathy', I tell myself that every day. I haven't by any means perfected my lifestyle (still not exercising) but I have made a start and for that I am so grateful. I have more compassion for people now and I am open to the imperfections in my life. I choose carefully who and what gives me cortisol.
I doubt they will find a cure for Sjogrens in my lifetime so I may need to accept that these symptoms are here to stay. That is a bitter pill to swallow and leaves me then with the only other option that changing my lifestyle may be the only other cure. I am the forever optimist, I want to be cured. I have hope. :)
You have no idea how much I resonate to your story. I sooooo regret not accepting treatment back in 2010 when I found that I had Sjogren's anitbodies. But, because I didn't feel that my moth and eye symptoms were that bad, I continued to work at a stressful job (sometimes seven days a week) and manage the care of my sick daughters and aging parents - ignoring what I should have seen as warning signs for the train wreck which was about to hit.
As I've had the opportunity to step back from my job, I continually wonder how I got so "sucked in" to that part of my life when there was so much more I should have been enjoying.
Although I hate living with these symptoms, the disease itself has given me may things to be grateful for. Even started a "gratitude jar" to remind myself of all that is good in my life.
I appreciate, thank you Connie. I find it healing to write about my experience whether anyone reads or not. I was a very private person but I am starting to open and share more, bringing me much joy. x
Love the gratitude jar! What a brilliant idea. I know this new lifestyle is not going to be a walk in the park but I visualize myself on the other side and its awesome!! Unfortunately there is no easy way to get to the other side but nothing can be worse than were I was, losing my sense of smell and taste, my dryness at its worst so that gratitude jar is a fantastic idea!
I am still in the process of discovering how I truly neglected myself in the past and I need to make peace with that too as I think it will help with my healing.
Sending you love and healing x
A Mom on Spin said:
Kate,
You have no idea how much I resonate to your story. I sooooo regret not accepting treatment back in 2010 when I found that I had Sjogren's anitbodies. But, because I didn't feel that my moth and eye symptoms were that bad, I continued to work at a stressful job (sometimes seven days a week) and manage the care of my sick daughters and aging parents - ignoring what I should have seen as warning signs for the train wreck which was about to hit.
As I've had the opportunity to step back from my job, I continually wonder how I got so "sucked in" to that part of my life when there was so much more I should have been enjoying.
Although I hate living with these symptoms, the disease itself has given me may things to be grateful for. Even started a "gratitude jar" to remind myself of all that is good in my life.
So happy you shared your healing journey with us, Kate! You remind me of Mee Tracey McCormick who wrote the book "My Kitchen Cure" who stopped eating fast food and other garbage and has made herself well when she was so sick from Crohn's Disease. It really makes you realize how our environment and food is the key to so much healing. THANK YOU so much for sharing that amazing lesson!!
Thank you for giving me a reason for my Sjogrens. I HAVE BEEN A SUGAR ADDICT ALL MY LIFE (A LONGGG TIME) I have been made aware that sugar causes Diabetes and since I don't have Diabetes, I have been thinking I must not have a problem. I have been struggling with peripheral neuropathy in my feet for years. Recently the pain in my back and hips maximized forcing me to take prescription pain meds. I have finally been advised my blood tests show I have Sjogrens. (I Don't have dry mouth; just the opposite, I have too much saliva causing me to drool....ugh! and my eyes are rarely dry. In fact one eye waters a lot.?????....so Go figure!) I have reduced the pain med to half and hope that my doctor will substitute something else less apt to damage my liver at my next appointment this week.
I saw myself in your letter. I would like to know how much sugar you are allowed? Is EVERYTHING with sugar taboo or is there sugar exceptions like in coffee or tea, on cereal or a dessert on special occasions? Do you have a special diet and a list of foods to avoid?
Was gluten always around or is it genetically modified? If not, when and why did it come into existence? I don't remember hearing about gluten when I was a child??Do most foods have gluten in it?? I too am trying to cut out sugar. I have a BAD addiction to Jelly Belly Jelly Beans!! I can't just have a couple. So, it's best that I get the courage to walk quickly pass them in stores. I use Stevia a lot as a replacement for sugar.It's not bad at all & it's natural. I pray for the WILL POWER to be able to change my diet too. My last blood test showed high that my sugar was a little high. If it happens the with the next blood test, I will have one more label "diabetic!!!" Please send some prayers up for me. Diabetes killed my mom.
Gluten started to be an issue in the 1950's. The US decided to start hybrizing our wheat to make breads fluffier and higher. People liked things like Wonder Bread that was so fluffy and rose so high. So it started and continued. The original wheat (from nature) grows between 4-5 feet high and has much smaller amount of gluten. In the US, our new hybridized wheat grows only 2 feet high and has (from what I've read) enough gluten in one slice of bread to need 3 cow's stomachs to digest. I've read from people on-line with Celiac Disease that when they travelled to places like Paris or Hungary (those were the 2 mentioned), they gave in and ate some bread expecting to be sick. But they didn't get sick at all! They kept eating those breads made with the ancient wheat and got better and better for the weeks they were there! When they returned to the US, they were very sick again within 2 weeks.
confused said:
Was gluten always around or is it genetically modified? If not, when and why did it come into existence? I don't remember hearing about gluten when I was a child??Do most foods have gluten in it?? I too am trying to cut out sugar. I have a BAD addiction to Jelly Belly Jelly Beans!! I can't just have a couple. So, it's best that I get the courage to walk quickly pass them in stores. I use Stevia a lot as a replacement for sugar.It's not bad at all & it's natural. I pray for the WILL POWER to be able to change my diet too. My last blood test showed high that my sugar was a little high. If it happens the with the next blood test, I will have one more label "diabetic!!!" Please send some prayers up for me. Diabetes killed my mom.
Another thing I found to be a great help with the fatigue is switching to drinking only Mineral Water. Within 3 days, my fatigue lifted. It's a book I was reading on Sjogren's and bringing the body back to his slightly alkaline pH. Sugar and other non-nutritious foods put the body into an acidic pH, and disease LOVES an acidic body. It thrives. Mineral water is a pH of about 7.6 or 7.8, which is close to the body's -- 7.4. I know it sure costs more, but I was at the end of my ropes and would do anything to try and get better. The "alkaline" waters that are sold, though, have a pH of 9 or 10. I've read that it is ok to drink those for only 1 or 2 months. If you drink it for longer, you will get illnesses from being too alkaline. So the book said that Mineral Water was the best for long term -- in glass.
Gluten is a naturally occurring protein in wheat, but in high-volume commercial breads (Wonder Bread, Bunny Bread, big names like that) the wheat used has been designed to have high levels of gluten which creates a lovely fluffy, soft texture. The rise in Celiac disease has been speculated to be due in part to the high gluten wheat products we consume today that we didn’t have 100 years ago. (There’s also a genetic component too)
confused said:
Was gluten always around or is it genetically modified? If not, when and why did it come into existence? I don't remember hearing about gluten when I was a child??Do most foods have gluten in it?? I too am trying to cut out sugar. I have a BAD addiction to Jelly Belly Jelly Beans!! I can't just have a couple. So, it's best that I get the courage to walk quickly pass them in stores. I use Stevia a lot as a replacement for sugar.It's not bad at all & it's natural. I pray for the WILL POWER to be able to change my diet too. My last blood test showed high that my sugar was a little high. If it happens the with the next blood test, I will have one more label "diabetic!!!" Please send some prayers up for me. Diabetes killed my mom.
I love reading this I have been having a very rough day and you have greatly made it better. I know you will have bad days but I think you will be one of those people that are an inspiration to others no matter what thank you for writing this.
We have so little products here in South Africa that are gluten free so I have to make my own bread and cake. Gluten was the easiest one to give up because its mostly starch. Wonderful info on Gluten by Doctors on the internet who explain the journey of Gluten in the body, me and my foggy brain are not so good with remembering facts.
I understand your jelly bean craving, i had a packet next to my bed everyday, now I have almonds. Yes I know what you thinking, never!! I would have said never too back then but losing my sense of taste and smell really gave me a fright and I had to change my lifestyle quickly. Hopefully my taste and smell will return fully within the year or I may have done permanent damage. Research sugar, I was blown away with the science of what it does in the the body. We humans were never meant to consume the amount of sugar we are and its in everything.
Be brave, I know you can do it. Sugar free and healthy! :)
confused said:
Was gluten always around or is it genetically modified? If not, when and why did it come into existence? I don't remember hearing about gluten when I was a child??Do most foods have gluten in it?? I too am trying to cut out sugar. I have a BAD addiction to Jelly Belly Jelly Beans!! I can't just have a couple. So, it's best that I get the courage to walk quickly pass them in stores. I use Stevia a lot as a replacement for sugar.It's not bad at all & it's natural. I pray for the WILL POWER to be able to change my diet too. My last blood test showed high that my sugar was a little high. If it happens the with the next blood test, I will have one more label "diabetic!!!" Please send some prayers up for me. Diabetes killed my mom.
Thank you DLT88 for your positive feedback. I am going to look up that book as it sounds like she may have recipes and general tips on how to make the changes. I always say that I am looking for my tribe, the gluten, sugar and diary free peeps who will keep me going when it gets tough. We need inspiration when making changes. :)
DLT88 said:
So happy you shared your healing journey with us, Kate! You remind me of Mee Tracey McCormick who wrote the book "My Kitchen Cure" who stopped eating fast food and other garbage and has made herself well when she was so sick from Crohn's Disease. It really makes you realize how our environment and food is the key to so much healing. THANK YOU so much for sharing that amazing lesson!!
Your a honey :) thank you for your kindness. I am no pro but something profound has changed within me and I can't help but share. Sorry you had a rough day, they are our great tests which we learn the most from. Be kind to you :) x
purplebutterfly said:
I love reading this I have been having a very rough day and you have greatly made it better. I know you will have bad days but I think you will be one of those people that are an inspiration to others no matter what thank you for writing this.
I'm one of your tribe then, Kate! I had to give up all of those, too - dairy, gluten, and sugar since last October. I'm still searching for a good GF bread to make -- but there is tasty one in the "My Kitchen Cure" book that is made with almond butter. I use different gf flours with it, and when I make it with the egg substitute it doesn't rise much -- but it tastes like brownies to me! They aren't sweet, but it's the texture and the color -- dark. It's such a treat and pretty easy to make.
Kate said:
Thank you DLT88 for your positive feedback. I am going to look up that book as it sounds like she may have recipes and general tips on how to make the changes. I always say that I am looking for my tribe, the gluten, sugar and diary free peeps who will keep me going when it gets tough. We need inspiration when making changes. :)
DLT88 said:
So happy you shared your healing journey with us, Kate! You remind me of Mee Tracey McCormick who wrote the book "My Kitchen Cure" who stopped eating fast food and other garbage and has made herself well when she was so sick from Crohn's Disease. It really makes you realize how our environment and food is the key to so much healing. THANK YOU so much for sharing that amazing lesson!!
I so believe all that genetically modified, hormone injected stuff is what is wrong with so many of us..that and our sedentary lifestyle's. Not having to do physical labor sounded great, mass production seemed like we'd have more..more product and more time to enjoy life...but its not so great. And healthy costs so much more. But honestly, I'm thinking its a small price for reducing some pain. I think I will try mineral water. I know my husband says he feels better drinking bottled water than out filtered tap water. I'm already making a lot of dietary changes post gallbladder removal, this may be yet another.