So this is going to be a bit long, but so worth the read for all of you. Since moving to Kentucky, I have had to make quite a bit of appointments - one daughter needed braces, new dentist for all, new doctor for all, ophthalmology appointment for my son, and then I had to make a dermatologist appointment for my other daughter. She had developed millia on her nose (clear cysts that form just under the skin - harmless but noticeable). She also had small itchy bumps on and off on her legs for the last 1-2 years. Nothing bad - didn't even look like eczema. But the millia was my biggest concern given she is very fair in complexion and I personally could have removed them with a needle, but I did not want to risk scarring her face. So with great trepidation I made an appointment which finally arrived this morning. Being that I have a distaste for dermatologists, I was nervous and ready to pounce at the first mention of steroids.
We arrived at this big glass building - all new and shiny. The waiting room alone was half the size of our house! They are a very big group which only made me more nervous. But I was willing to keep an open (however hesitant) mind. We were in and out in less than 30 minutes. So that alone spoke volumes given how long I have waited in the past - they were quick and very efficient. But back to the appointment - we gave the info to the nurse, then 3 minutes later, in came the doctor - she was very pleasant. She said the millia could be taken care of with retinol-A - a very low dose over 1-2 months and they would come to the surface and disappear. Then we came to the bumps on the legs - "atopic dermatitis" - UGH! I was just waiting to hear the word steroid - instead she went on about a few products newer on the market (over the counter) that would clear her right up. I'm like - yeah ok, do they contain steroids? Her answer - absolutely not! She was in and out so quick. But the nurse lingered. So I explained how I had a fear of steroids and was she 100% sure those products were steroid free. The nurse went on to explain that they do not use any steroids at all unless there is absolutely no other choice. She said they were very big on NOT using them. I then explained my reasons for being concerned - that I've seen multiple derms across the country and for 30 years was given steroid creams. She literally gasped! She said that was horrible. I then told her I came off of them 3 years ago and she said (no joke) that I must have flared terribly for a long time because coming off steroids would have been like an addiction! When I say I cried - I really cried. It's weird because even though I am healed, to hear that validation from a big dermatology group was HUGE and VERY OVERWHLMING! My poor daughter couldn't figure out why I was crying and there is no way to explain to her at 10 years old how I felt.
Then she asked if I was having any skin problems - I said I just got a bit of dry eczema from time to time related to what I ate. She then gave me free samples for a great hand cream (being a nurse I get dry hands now from hand washing). In fact I walked out with tons of free samples and won't even have to pay for the retinol-A for my daughter. My 13 year old daughter gets hand eczema so the creams I was given will be for her as well. I will post later on the products if they do any good.
But the bottom line is I came out of that appointment with a better attitude towards the medical community than I've had in a long time. The sense of validation I got was priceless and hopefully will give you all hope for the future of others living with eczema. Knowing that not all doctors jump right to steroids and even avoid them is amazing and shines a bright light on the dermatologists here in Lexington, KY.
Thursday, May 19, 2016
Monday, May 16, 2016
Updates and 200th post!
This is my 200th post for this blog. Pretty crazy! But lately I have been hearing from people who have silently followed my blog and found some relief from their flaring. They have expressed gratitude and this makes me very happy that I started this blog in the first place. Initially I didn't want to show my pictures to the world. It was a horrific time and the pain of looking at myself in the pictures was too much at times. But our stories must be told. It is necessary to spread the word and get awareness out there so others can stop suffering with the ongoing need for more and more steroids only to have their skin get worse. So thank you to all who have been emailing me and sharing your stories with me!
As for updates.....well things are looking really good as of late. I have shared with you for the last year how I have had regular eczema - dry itchy patches here and there from my diet. It typically gets worse with dairy and gluten and I've found it hard to keep them out of my diet for various reasons - mostly just being busy. I still follow a very natural, organic diet. I still get raw milk every week and make my own butter, kefir, and yogurt. I typically will have butter but only a small amount of cream in my coffee. I've really tried giving the coffee and cream up, but it's so good and I find it relaxes me - especially my evening cup of vanilla flavored decaf coffee. So instead of trying to constantly restrict my diet (which let's admit is NO FUN! nor easy), I have instead been focused on healing my gut. I have been taking probiotics for years and consume probiotic rich foods. But the last few years I have been dealing with worsening hives and asthma symptoms as well as the eczema. I did quite a lot of research and talked with an ND and it appears I have histamine intolerance. Some support groups and articles say histamine intolerance is something chronic and will never go away. Well, I don't believe that, just like I didn't believe we had to suffer for years with TSW. I believe our bodies have an inherit ability to heal themselves given the right environment and the right tools.
But let's face it, how do we know how to help our bodies heal if we don't know the root cause? Steroid creams are not the root cause of RSS and subsequent TSW when stopping them. Too many people use steroid creams intermittently with no problems. So there is something wrong within us that does not allow our bodies to process the steroid creams appropriately. The genetics thing I covered in my last post. Today I want to talk about the other piece to this puzzle - our diet - or more to the point - the health of our guts. Hippocrates was a smart man - his whole practice was based on the concept that all disease begins in the gut. And I believe he's 100% right! I have now switched to trying to give my body the tools it needs to heal without restricting my diet to the point of insanity. I stay away from store bought gluten products. From time to time I make my own bread with einkorn flour which is an ancient wheat with significantly less gluten than today's flour. I also do not consume any dairy products outside my raw milk supply. I don't eat sugary foods or processed foods for that matter. I have tried the low histamine foods and the intermittent fasting which does seem to help but is only a crutch, not an answer. I believe my body should be able to process whatever histamine I throw its way once it is fully healed. So I began an extensive research on leaky gut "cures". I'm a certified GAPS diet practitioner and I am well aware of how GAPS helps to heal the gut - but the main staple that needs to be consumed at every meal is bone broth - which is high histamine. Hmmmm....kind of defeats the purpose! All the inflammation brought on by the high histamine will just impede my ability to heal. So what to do.....
I found a GREAT article - and I mean this is super comprehensive and literally encompasses the entirety of how to heal our guts without going through hell to get there. It is actually very similar to the GAPS diet but is doable to do in a month or 2 time whereas GAPS is almost a year long commitment. Here it is: http://goodbyeleakygut.com/heal-leaky-gut-syndrome/
Now, with that said, let me explain what I am currently doing out of that article and how it has been helping me....let me just say I'm not doing much and it's still helping significantly! So I haven't given up gluten yet. I still love over easy farm fresh eggs with toast that I can dip in the warm yolks - YUM! That's a big thing for me to give up and I'm just not there yet. But, I have started increasing my L-glutamine. I was taking 1500 mg a day with food and other supplements. Now I wake up and take it on an empty stomach and another dose in the evening before dinner. Currently I am up to 8000 mg per day divided into 2 doses. I buy the 1000 mg capsules by NOW on Amazon. I have continued with my bovine colostrum which I saw improvements with my asthma but not enough to get it fully under control. I am also back to my Great Lakes gelatin (green container) and take 4 tablespoons divided into 2 doses daily. I do this instead of making my own broth. I plan to increase to 6 tbsp a day this week. And well, that's it. I still of course take a few other supplements to help with inflammation (for my asthma and gut) like MSM powder, quercetin, co-q 10, fermented cod liver oil, and immune modulators. I believe it is this multi tool approach that is helping me to finally see huge improvements. To note, I have only been on this regimen for the last 7 days and already my dry patches are almost completely gone and my asthma has not bothered me in 3 days. Up to then I was taking 2-3 treatments per day of my inhalers or rescue med. I am on no other meds for anything. I have had to take benadryl here and there for hives but that stopped about 3 days ago as well. No hives, no major itching after eating (with an exception here or there to the itching). I will keep at this approach and will continue to titrate my L-glutamine up to 10,000 mg per day as per the maintenance dose. I may or may not do the higher dosing for a few days or the bone broth fast. I think I will continue on this path and see how thing progress. If I find I'm still having histamine problems or asthma gets worse, then I will incorporate some more strict limits on my diet for a bit to see what happens.
Right now, I am fully enjoying life! I walk my dogs daily, have fun with my kids home schooling them, go to parks, and still learning new things - like lately I've been into learning about how to dehydrate my own food for long term storage. My husband is still in NY for work and will be coming home for good in June! We are still in the process of closing on our house in NY and when that is finally done, we can start the building process on our 68 acres! This year we are going to plant some fruit trees, and put netting on the hundred or so wild blackberry bushes we have on our property. Last year we went to pick some but the deer and birds got most of them, so a few dollars in nets and we should have a HUGE harvest of blackberries this year! Very excited!
Otherwise, life is and has been back to some semblance of normalcy for me. I no longer fear a flare as it has been way too long since my skin bothered me. My minor finger flare this past winter was I believe the dying out of my TSW....it was on my pinky finger and it made me think that it was taking the final dive to being done. The hives and asthma has been remarkably better for the last few months since starting the colostrum and is now even better since my latest additional supplements. I don't think about my skin at all - it has no bearing on any decisions for me. It doesn't matter if it's hot or cold out. It doesn't matter if I take a shower or a bath. If you are still in the thick of things, know this....you too will heal and it will be glorious!
Here are a few pics of my skin from this morning:
As for updates.....well things are looking really good as of late. I have shared with you for the last year how I have had regular eczema - dry itchy patches here and there from my diet. It typically gets worse with dairy and gluten and I've found it hard to keep them out of my diet for various reasons - mostly just being busy. I still follow a very natural, organic diet. I still get raw milk every week and make my own butter, kefir, and yogurt. I typically will have butter but only a small amount of cream in my coffee. I've really tried giving the coffee and cream up, but it's so good and I find it relaxes me - especially my evening cup of vanilla flavored decaf coffee. So instead of trying to constantly restrict my diet (which let's admit is NO FUN! nor easy), I have instead been focused on healing my gut. I have been taking probiotics for years and consume probiotic rich foods. But the last few years I have been dealing with worsening hives and asthma symptoms as well as the eczema. I did quite a lot of research and talked with an ND and it appears I have histamine intolerance. Some support groups and articles say histamine intolerance is something chronic and will never go away. Well, I don't believe that, just like I didn't believe we had to suffer for years with TSW. I believe our bodies have an inherit ability to heal themselves given the right environment and the right tools.
But let's face it, how do we know how to help our bodies heal if we don't know the root cause? Steroid creams are not the root cause of RSS and subsequent TSW when stopping them. Too many people use steroid creams intermittently with no problems. So there is something wrong within us that does not allow our bodies to process the steroid creams appropriately. The genetics thing I covered in my last post. Today I want to talk about the other piece to this puzzle - our diet - or more to the point - the health of our guts. Hippocrates was a smart man - his whole practice was based on the concept that all disease begins in the gut. And I believe he's 100% right! I have now switched to trying to give my body the tools it needs to heal without restricting my diet to the point of insanity. I stay away from store bought gluten products. From time to time I make my own bread with einkorn flour which is an ancient wheat with significantly less gluten than today's flour. I also do not consume any dairy products outside my raw milk supply. I don't eat sugary foods or processed foods for that matter. I have tried the low histamine foods and the intermittent fasting which does seem to help but is only a crutch, not an answer. I believe my body should be able to process whatever histamine I throw its way once it is fully healed. So I began an extensive research on leaky gut "cures". I'm a certified GAPS diet practitioner and I am well aware of how GAPS helps to heal the gut - but the main staple that needs to be consumed at every meal is bone broth - which is high histamine. Hmmmm....kind of defeats the purpose! All the inflammation brought on by the high histamine will just impede my ability to heal. So what to do.....
I found a GREAT article - and I mean this is super comprehensive and literally encompasses the entirety of how to heal our guts without going through hell to get there. It is actually very similar to the GAPS diet but is doable to do in a month or 2 time whereas GAPS is almost a year long commitment. Here it is: http://goodbyeleakygut.com/heal-leaky-gut-syndrome/
Now, with that said, let me explain what I am currently doing out of that article and how it has been helping me....let me just say I'm not doing much and it's still helping significantly! So I haven't given up gluten yet. I still love over easy farm fresh eggs with toast that I can dip in the warm yolks - YUM! That's a big thing for me to give up and I'm just not there yet. But, I have started increasing my L-glutamine. I was taking 1500 mg a day with food and other supplements. Now I wake up and take it on an empty stomach and another dose in the evening before dinner. Currently I am up to 8000 mg per day divided into 2 doses. I buy the 1000 mg capsules by NOW on Amazon. I have continued with my bovine colostrum which I saw improvements with my asthma but not enough to get it fully under control. I am also back to my Great Lakes gelatin (green container) and take 4 tablespoons divided into 2 doses daily. I do this instead of making my own broth. I plan to increase to 6 tbsp a day this week. And well, that's it. I still of course take a few other supplements to help with inflammation (for my asthma and gut) like MSM powder, quercetin, co-q 10, fermented cod liver oil, and immune modulators. I believe it is this multi tool approach that is helping me to finally see huge improvements. To note, I have only been on this regimen for the last 7 days and already my dry patches are almost completely gone and my asthma has not bothered me in 3 days. Up to then I was taking 2-3 treatments per day of my inhalers or rescue med. I am on no other meds for anything. I have had to take benadryl here and there for hives but that stopped about 3 days ago as well. No hives, no major itching after eating (with an exception here or there to the itching). I will keep at this approach and will continue to titrate my L-glutamine up to 10,000 mg per day as per the maintenance dose. I may or may not do the higher dosing for a few days or the bone broth fast. I think I will continue on this path and see how thing progress. If I find I'm still having histamine problems or asthma gets worse, then I will incorporate some more strict limits on my diet for a bit to see what happens.
Right now, I am fully enjoying life! I walk my dogs daily, have fun with my kids home schooling them, go to parks, and still learning new things - like lately I've been into learning about how to dehydrate my own food for long term storage. My husband is still in NY for work and will be coming home for good in June! We are still in the process of closing on our house in NY and when that is finally done, we can start the building process on our 68 acres! This year we are going to plant some fruit trees, and put netting on the hundred or so wild blackberry bushes we have on our property. Last year we went to pick some but the deer and birds got most of them, so a few dollars in nets and we should have a HUGE harvest of blackberries this year! Very excited!
Otherwise, life is and has been back to some semblance of normalcy for me. I no longer fear a flare as it has been way too long since my skin bothered me. My minor finger flare this past winter was I believe the dying out of my TSW....it was on my pinky finger and it made me think that it was taking the final dive to being done. The hives and asthma has been remarkably better for the last few months since starting the colostrum and is now even better since my latest additional supplements. I don't think about my skin at all - it has no bearing on any decisions for me. It doesn't matter if it's hot or cold out. It doesn't matter if I take a shower or a bath. If you are still in the thick of things, know this....you too will heal and it will be glorious!
Here are a few pics of my skin from this morning:
This is me sitting down after going for a walk this morning with the dogs. Ever so slightly splotchy on the face, but it was 40 something degrees outside.
My dry eczema - got a little itchy after walking
These 2 pictures were taken last month as part of my weight loss competition. They're slightly blurry due to one of my children taking the pictures, but it is evident that my skin is quite clear and I'm continuing to do well.
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