Well it is day 4 of my very limited diet. All I can say is I'm doing way better!! No hives and only 2 neb treatments for my asthma in the last 36 hours. That's truly amazing given I was on average doing 3 to 4 per day. I was a bit concerned about the bone broth due to my histamine intolerance but so far no hives. I did have to use my neb yesterday because I ate bacon bits in my salad. I thought for sure my reaction the other day was due to the eggs, not the bacon. But I had bacon yesterday and got itchy and needed a breathing treatment. This morning I just had eggs and no reaction. It really helps to only eat 4 to 5 things total each day. When I add something new, it is then very obvious what I'm reacting to.
All I can say is I'm very excited to be sleeping all night and not needing a neb treatment first thing upon waking (or being woken up by labored breathing). It is definitely worth a try for all you warriors out there. You may not notice things at first due to major inflammation, but given time I do think diet is the key to overall health.
By the way....I've had a huge problem losing weight since going into TSW....I was about 160 lbs at the beginning and I went up to 220. I've tried numerous times to eat healthier and would only lose 5 lbs at the most. I made it down to 210 the last few months and was so frustrated because it felt like I was barely eating due to all my hives and asthma yet I couldn't seem to lose any weight. Well I'm happy to announce I'm down to 207. That''s 6 lbs in 5 days. I'm sure a few lbs is just water given my high protein, low carb diet. But it still feels good to see something less than 210.
That's it for now. I'll keep you all posted as the days and weeks progress.
Sunday, June 12, 2016
Friday, June 10, 2016
Healing with food
There is so much controversy on whether or not healing can be sped up with a change in diet. I personally had less itching and hives whenever I cut out dairy and gluten. I have heard mix reviews. I do know that doing a cleansing diet can actually exacerbate the symptoms of TSW however according to natural medicine, one must get worse before one gets better. This seems to be true for many health problems as well. Today though I am going to start a discussion on healing with food for my hives and asthma.
I have been writing about my hives and asthma for a good year now. It seemed as soon as my skin healed, my asthma and hives just escalated. It has been very discouraging to say the least. For over a year I have also began and stopped my all natural diet so many times! I was not consistent for any length of time due to moving and stress with my husband still living 12 hours away due to the poor job conditions here in KY.
But the last few weeks I have done a slow progression of heading towards my all natural diet. I have been working part time so I knew I couldn't stick with it all. About 3 weeks ago I vowed to not eat gluten for at least 6 months. So far not a bite! I've been very careful about what I am eating and made sure gluten was in nothing. My hives and asthma have improved about 25 to 30%.
My next step was to do a semi fast of bone broth. Knowing broth is high histamine I knew that if I was going to eat anything at all it would have to be strictly freshly cooked organic meat or cooked veggies. So yesterday was day 1. 4 cups of beef broth I made at home and dinner of cooked chicken with sautéed mushrooms and onions. No hives and my asthma was reduced by 50% in the last 24 hours. Today I had scrambled eggs and organic bacon along with 2 to 3 cups of beef broth. I have some slight itching so I'm thinking eggs and/or bacon are outof my diet for now. But no asthma symptoms whatsoever today.
Now I know that using my inhaler or nebulizer 4 to 5 times a day is completely uncontrolled! I am well aware of that. However I refuse to use an inhaled steroid and singulair. I know singulair is not a steroid but I want to get off all medications. So taking it would defeat the purpose of pushing myself to eat better.
Of course things can change. I will keep you all updated on my progress. As a side note I'm only taking a few supplements during this...my probiotic, my active B's, and l-glutamine for gut healing. I stopped everything else to give my body a rest.
I have been writing about my hives and asthma for a good year now. It seemed as soon as my skin healed, my asthma and hives just escalated. It has been very discouraging to say the least. For over a year I have also began and stopped my all natural diet so many times! I was not consistent for any length of time due to moving and stress with my husband still living 12 hours away due to the poor job conditions here in KY.
But the last few weeks I have done a slow progression of heading towards my all natural diet. I have been working part time so I knew I couldn't stick with it all. About 3 weeks ago I vowed to not eat gluten for at least 6 months. So far not a bite! I've been very careful about what I am eating and made sure gluten was in nothing. My hives and asthma have improved about 25 to 30%.
My next step was to do a semi fast of bone broth. Knowing broth is high histamine I knew that if I was going to eat anything at all it would have to be strictly freshly cooked organic meat or cooked veggies. So yesterday was day 1. 4 cups of beef broth I made at home and dinner of cooked chicken with sautéed mushrooms and onions. No hives and my asthma was reduced by 50% in the last 24 hours. Today I had scrambled eggs and organic bacon along with 2 to 3 cups of beef broth. I have some slight itching so I'm thinking eggs and/or bacon are outof my diet for now. But no asthma symptoms whatsoever today.
Now I know that using my inhaler or nebulizer 4 to 5 times a day is completely uncontrolled! I am well aware of that. However I refuse to use an inhaled steroid and singulair. I know singulair is not a steroid but I want to get off all medications. So taking it would defeat the purpose of pushing myself to eat better.
Of course things can change. I will keep you all updated on my progress. As a side note I'm only taking a few supplements during this...my probiotic, my active B's, and l-glutamine for gut healing. I stopped everything else to give my body a rest.
Thursday, May 19, 2016
BEST Dermatology Visit EVER!!!!!
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.
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.
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.
Thursday, April 14, 2016
The Realty of Healing from TSW
I have talked about this before - but need to revisit it given the increased number of people visiting my blog and the TSW support groups on Facebook. So many more people are going through the suffering of TSW. Many ask if this is worth it? If all the pain and agony will some day end. I have heard of people who are still going through hell 3 or 4 years into TSW with little relief. I have heard of people going through 6 months of TSW and then heal without any further problems. And then the ultimate question: why are there thousands of people using TS without any ill effect??? And yes those people are out there. I have a distant cousin who uses a strong TS - clobe - something or other every winter for approximately 4-5 months and comes off of it in the Spring without ANY ill effects - puts the tube away and doesn't touch it again until fall/winter time. No withdrawal, no redness or swelling. So I know it's possible for people to use TS safely without long term effects. Why are we different? Why do some people use TS for a few months and then suffer with horrible TSW symptoms for over a year? WHY are we going through this hell?
For those new to my blog, let me recap - I used TS consistently for 30 years - since the age of 10. I went through what I now know to be TSW approximately 10 years ago after the birth of my 3rd child. It lasted about 3 to 4 years. I did use over the counter TS in a mixture of creams so I never came off TS entirely but I went from a very strong TS to the weakest so my body reacted horribly. It was a dark time for me - not being able to breastfeed - not knowing why I couldn't function to care for my 3 children. I had liver damage the doctors couldn't explain. I went on a quest then to find out what was wrong with me. It took all these years to see the real damage that was done to my body - but TS was not the main culprit. It was the tipping point I believe.
Let's fast forward to 2013 when I read about TSW and decided right then and there to stop TS and go through TSW all over again. It was a no brainer for me but also a hard decision - it meant putting our dreams on hold and pulling our kids out of activities. Hubby went on overtime and our life went from pretty good to crisis mode overnight. I went into a full body flare. I tried all the snakeoils. I was beyond determined to find out WHY. I mean as a nurse, I saw one too many burn patients - they had skin way worse than ours and they healed within 3-4 months. Why are we taking YEARS to heal? I took some of my cellular level hypotheses to a naturopathic doctor. He confirmed my thoughts but with a slightly different angle. It was a DNA issue (I thought it was an RNA issue regarding skin cell reproduction). Turns out me and many other TSW patients have a genetic mutation regarding methylation - basically we cannot produce enough glutathione - the one thing that repairs and cleanses ALL cells in the body. Now this finally made sense to me! Our skin cells cannot heal from the damage of TS because many of us lack enough glutathione production.
Now there are some people who have tested negative for the MTHFR mutation - the more common methylation gene. However there are upwards of 40 or so genes responsible for methylation. Not sure if those people got a full panel testing done or not. But many of us have and have found immense relief from the symptoms. My relief came within 2 weeks of starting testing and IV glutathione injections. I was even able to return to work on a part time basis. My symptoms finally disappeared last year when I changed my diet. I still get eczema on my arms if I eat dairy but no other TSW symptoms have come back. And just an FYI - I started treatment at 8 months TSW. I found complete relief around 26-28 months (I'd have to go back and re-read my blog to get more exact dates). Now from month 8 onward, I never had another full body flare. I had what I called micro flares - flaring in one or two sections of my body like back of knees, neck, hands, etc. It wasn't enough to stop me from working unless my hands were flaring. I had shivering/feeling cold and hot flashes for about maybe 6-12 months. Not really sure - it kind of faded slowly. I remember the summer of 2014 when I was about 16-18 months TSW and I had a few days where the heat bothered me. But I had my life back and was able to move on.
But there is one thing that must be addressed - the topic of moisturizer withdrawal - such a controversial issue in the TSW community and I understand why. But I know I would have suffered more if I had not done MW at the same time of starting treatment. My ND told me it was a good idea given my cells couldn't process anything I put on my skin - even natural stuff (although that was better if moisturizer was needed). So I did MW and was in great pain for about 4-6 days. I had to do everything but my neck and then did my neck some months later.
With this knowledge of DNA mutations, I came to understand why I had so many other minor health issues - my body just couldn't repair itself adequately. If I ate bad foods, my body would then have a hard time processing the chemicals in the bad food - so yes, diet is extremely important for those in TSW who have methylation mutations. And I discovered this first hand last year when I had that persistent eczema on my arms. Guess what? It's back because the last few months I have been slacking on my diet. And my vitamins. Oh - and I've been under a little stress. But if all I have left over is eczema on my forearms, then trust me when I say I'm happy!
Bottom line....I know there is an answer for a lot of you still suffering. I know there is an END to this hell of daily pain and burning. I've lived it and now I'm on the other side.
But let's visit the topic of where are the healed TSWers? Well for one, we are out living our lives - making up for those lost months and years. For me that meant devoting so much more time to my kids and hubby as they carried me for about a good year - taking care of me and the whole house. We are returning to those dreams we had to let go of for some time. We will from time to time come back to give comforting words and pictures. But many do not come back or visit often - it is extremely hard to see all of you suffering because we know exactly how you feel - you may think like I did that it would make us want to be there daily for all of you. But what I learned is it is actually harder once we are healed to come back - we re-visit the pain. It is agonizing to see your pictures as it brings back the pain we also went through. It's not an excuse nor an apology - just the way it is. I still return from time to time - either on my blog or on the FB page. At times I will answer some questions. But there are days I scroll past without even reading - knowing so many people are suffering with this causes many of us healed people great anxiety. We so desperately want to help like I do - but some days are harder than others to return to the pain. I've made myself a promise to keep this blog going and to return at least every other month or so. I want to provide answers and hope for all of you. I know exactly the despair and hopelessness you deal with daily or during the bad flares. TSW not only affects us physically, but it disrupts our entire lives as we know them. Our jobs and relationships are deeply affected. Our mental health is tested beyond measure! We lose ourselves to this affliction and we lose so much else on top of that. All I can do is let you know that it does get better. I personally do not believe that time is the only healer. I personally couldn't swallow that motto. It made me feel helpless and beyond despaired. I rose up and looked for an easier way out of this crap and found it. Don't give up - time is not the only answer in my opinion. Maybe there are other issues besides methylation causing us to not heal. Genetics is a relatively new science. We need to keep going. While we are eager and justified in wanting to go after the TS makers, I no longer blame them. I take full responsibility in participating in the world's view that chemicals in our food and water and in drugs are OK. They aren't. This is not just a topical steroid problem. This problem within us started before birth - our inability to process all the chemicals we come in contact with. Eventually those chemicals add up and we blame the last big thing to cause us problems (like TS). But I am now on a mission to rid myself and my family of any excess chemicals. It's hard given how poisonous our world has become. But I can grow some of my own food and make better choices about the other food I buy. I can move to the country away from large amounts of pollution. I can air out my house. I can keep the level of chemicals I have to deal with at a minimum. Basically I am taking control of my own health. You can too! Hold on to the good fight because it is so worth it in the end!
I will leave off with a few pictures - only one with me included as I'm always the one taking the pictures! But there was no way I would be doing all these things if I was still suffering.
For those new to my blog, let me recap - I used TS consistently for 30 years - since the age of 10. I went through what I now know to be TSW approximately 10 years ago after the birth of my 3rd child. It lasted about 3 to 4 years. I did use over the counter TS in a mixture of creams so I never came off TS entirely but I went from a very strong TS to the weakest so my body reacted horribly. It was a dark time for me - not being able to breastfeed - not knowing why I couldn't function to care for my 3 children. I had liver damage the doctors couldn't explain. I went on a quest then to find out what was wrong with me. It took all these years to see the real damage that was done to my body - but TS was not the main culprit. It was the tipping point I believe.
Let's fast forward to 2013 when I read about TSW and decided right then and there to stop TS and go through TSW all over again. It was a no brainer for me but also a hard decision - it meant putting our dreams on hold and pulling our kids out of activities. Hubby went on overtime and our life went from pretty good to crisis mode overnight. I went into a full body flare. I tried all the snakeoils. I was beyond determined to find out WHY. I mean as a nurse, I saw one too many burn patients - they had skin way worse than ours and they healed within 3-4 months. Why are we taking YEARS to heal? I took some of my cellular level hypotheses to a naturopathic doctor. He confirmed my thoughts but with a slightly different angle. It was a DNA issue (I thought it was an RNA issue regarding skin cell reproduction). Turns out me and many other TSW patients have a genetic mutation regarding methylation - basically we cannot produce enough glutathione - the one thing that repairs and cleanses ALL cells in the body. Now this finally made sense to me! Our skin cells cannot heal from the damage of TS because many of us lack enough glutathione production.
Now there are some people who have tested negative for the MTHFR mutation - the more common methylation gene. However there are upwards of 40 or so genes responsible for methylation. Not sure if those people got a full panel testing done or not. But many of us have and have found immense relief from the symptoms. My relief came within 2 weeks of starting testing and IV glutathione injections. I was even able to return to work on a part time basis. My symptoms finally disappeared last year when I changed my diet. I still get eczema on my arms if I eat dairy but no other TSW symptoms have come back. And just an FYI - I started treatment at 8 months TSW. I found complete relief around 26-28 months (I'd have to go back and re-read my blog to get more exact dates). Now from month 8 onward, I never had another full body flare. I had what I called micro flares - flaring in one or two sections of my body like back of knees, neck, hands, etc. It wasn't enough to stop me from working unless my hands were flaring. I had shivering/feeling cold and hot flashes for about maybe 6-12 months. Not really sure - it kind of faded slowly. I remember the summer of 2014 when I was about 16-18 months TSW and I had a few days where the heat bothered me. But I had my life back and was able to move on.
But there is one thing that must be addressed - the topic of moisturizer withdrawal - such a controversial issue in the TSW community and I understand why. But I know I would have suffered more if I had not done MW at the same time of starting treatment. My ND told me it was a good idea given my cells couldn't process anything I put on my skin - even natural stuff (although that was better if moisturizer was needed). So I did MW and was in great pain for about 4-6 days. I had to do everything but my neck and then did my neck some months later.
With this knowledge of DNA mutations, I came to understand why I had so many other minor health issues - my body just couldn't repair itself adequately. If I ate bad foods, my body would then have a hard time processing the chemicals in the bad food - so yes, diet is extremely important for those in TSW who have methylation mutations. And I discovered this first hand last year when I had that persistent eczema on my arms. Guess what? It's back because the last few months I have been slacking on my diet. And my vitamins. Oh - and I've been under a little stress. But if all I have left over is eczema on my forearms, then trust me when I say I'm happy!
Bottom line....I know there is an answer for a lot of you still suffering. I know there is an END to this hell of daily pain and burning. I've lived it and now I'm on the other side.
But let's visit the topic of where are the healed TSWers? Well for one, we are out living our lives - making up for those lost months and years. For me that meant devoting so much more time to my kids and hubby as they carried me for about a good year - taking care of me and the whole house. We are returning to those dreams we had to let go of for some time. We will from time to time come back to give comforting words and pictures. But many do not come back or visit often - it is extremely hard to see all of you suffering because we know exactly how you feel - you may think like I did that it would make us want to be there daily for all of you. But what I learned is it is actually harder once we are healed to come back - we re-visit the pain. It is agonizing to see your pictures as it brings back the pain we also went through. It's not an excuse nor an apology - just the way it is. I still return from time to time - either on my blog or on the FB page. At times I will answer some questions. But there are days I scroll past without even reading - knowing so many people are suffering with this causes many of us healed people great anxiety. We so desperately want to help like I do - but some days are harder than others to return to the pain. I've made myself a promise to keep this blog going and to return at least every other month or so. I want to provide answers and hope for all of you. I know exactly the despair and hopelessness you deal with daily or during the bad flares. TSW not only affects us physically, but it disrupts our entire lives as we know them. Our jobs and relationships are deeply affected. Our mental health is tested beyond measure! We lose ourselves to this affliction and we lose so much else on top of that. All I can do is let you know that it does get better. I personally do not believe that time is the only healer. I personally couldn't swallow that motto. It made me feel helpless and beyond despaired. I rose up and looked for an easier way out of this crap and found it. Don't give up - time is not the only answer in my opinion. Maybe there are other issues besides methylation causing us to not heal. Genetics is a relatively new science. We need to keep going. While we are eager and justified in wanting to go after the TS makers, I no longer blame them. I take full responsibility in participating in the world's view that chemicals in our food and water and in drugs are OK. They aren't. This is not just a topical steroid problem. This problem within us started before birth - our inability to process all the chemicals we come in contact with. Eventually those chemicals add up and we blame the last big thing to cause us problems (like TS). But I am now on a mission to rid myself and my family of any excess chemicals. It's hard given how poisonous our world has become. But I can grow some of my own food and make better choices about the other food I buy. I can move to the country away from large amounts of pollution. I can air out my house. I can keep the level of chemicals I have to deal with at a minimum. Basically I am taking control of my own health. You can too! Hold on to the good fight because it is so worth it in the end!
I will leave off with a few pictures - only one with me included as I'm always the one taking the pictures! But there was no way I would be doing all these things if I was still suffering.
At the range a few months ago - this was my 10 year old's target with a 32 pistol. I'm a firm believer in our right to defend ourselves. Our kids are taught from a young age the dangers of firearms and the proper use and handling of them. My target had more center mass holes but then again I've had more practice than my 10 year old! :)
At the D.C. zoo last month
Seeing the sights in D.C.
This was at the end of our hike through the zoo - anyone who has been through it all knows how big that place is!
At Mt. Vernon
Hiking in some park near Mt. Vernon
On my way back to KY, we drove part way through the Skyline Drive in VA - so pretty!
Here we are at Luray Caverns!
A few weeks ago on our property - hiking to the top of our hill for some kite flying
Flying kites! Such a beautiful day!
We think we may have to settle for building a home at the bottom of the hill instead of at the top. If so, then we would build here after we knock out those few trees.
At Natural Bridge State Park here in KY back in Jan or Feb
It was a dangerous hike! Very icy and slippery!
The natural bridge from below
Me one morning a month ago - I'm participating in a diet bet group so I have to take pictures of myself on a scale to verify my weight. No redness or skin issues whatsoever. Just a grumpy look first thing in the mornings!
Monday, March 21, 2016
Launch of business and update!
Well I finally did it - started my own health coaching business! I'm very excited about this and feel I can be very helpful to many people seeking better health through more natural means. Please pass this along if you feel it can help someone! :)
As for my recent finger flare - haven't even stopped to take pictures - been busy as usual. Now it is almost gone! So I guess it was no big deal and probably related to the crazy anniversary flare thing us TSWers seem to get. Rest of my skin remains the same - clear with the occasional dry, itchy patches more like dry skin than eczema. And of course I still get itchy on my arms when I eat dairy and gluten. My hives have disappeared - however they did appear for 3 days after eating 1 strawberry, so now I can't eat chocolate OR strawberries. Oh well! My asthma is over 75% better now! I have been taking powdered bovine colostrum with tremendous results!!! I can tolerate dairy and gluten much better! I should do a dairy and gluten free diet again while taking the powder but life continues to be crazy busy! So I am doing my best just to eat a clean diet right now! 2 days ago we got back from a trip to DC. Such FUN!!! Of course the day before we left was pretty intense as one of our dogs became seriously ill and required surgery. The good thing was she spent her recovery at the vet's hospital instead of me having to deal with an intense recovery. She is 100% and we are back home. I am now going to dive head first into my new business and into the kids' activities. They were just doing ice skating but now we are adding Taekwando and horseback riding lessons. I also want to sign them up for tennis lessons this summer. They are all very excited! And let me just tell you how NICE it is to be able to PLAN things!!! Through my first 2 years of TSW, planning anything was impossible. How was I going to feel? Could I tolerate driving, the outdoors, etc? It was pretty sad because I had to stop my kids' gymnastics lessons as I couldn't drive for many months. Now life continues to be excellent!!! I can't express to all of you how WONDERFUL it feels to just wake up and not feel anxious and be in pain - to be able to just hop in the shower and get dressed in normal clothes - and to go to bed without medicating myself so I wouldn't scratch myself to a bloody pulp! Life does get better and it goes back to a level of normal you can't imagine while being in the depths of hell during TSW. Keep the faith!
Wednesday, March 9, 2016
A Finger Flare??
For the last year or so since my skin became all normal, I have had a few dry itchy patches here and there on my body - mostly a few spots on forearm and hands. Well I've had a patch of regular eczema like skin on my pinky finger of my right hand. Nothing major or bothersome. But since my 3rd year anniversary of TSW last month, this patch has turned into a flare - swollen and oozing! I have not oozed in about 2 years!!!! Seeing ooze on the gauze was very discouraging for all of 10 seconds. I am treating it like I did my previous hand flares - with silvadene and an antibiotic ointment. It hasn't spread nor gotten any worse, but neither is it getting better. I wish my camera was easier to access right now. I'll take a picture when I find it.
In all honesty it's really not a big deal - it is on the top and right side of the finger only and goes from the nail bed to the larger knuckle. So about 1 inch by 1.25 inches at most. The only problem I have is it stings when I do dishes and I often have a lot of dishes on a regular basis - kids help out 80% of the time so I can't complain. I think I was in denial the first week I saw the ooze. Now I'm just like: "If that's all my 3 year 'anniversary flare' is going to amount to then bring it!!"
So many people with TSW complain of anniversary flares. I can't wrap my head around how this can be from a medical point of view. I have heard all the arguments and theories on why these occur but none of them make sense. But it is what it is! I'm just very thankful mine is so isolated!!!
That is all I have to report! Going away soon on a trip! More on that soon! Hope y'all are finding some peace and pain free days!
In all honesty it's really not a big deal - it is on the top and right side of the finger only and goes from the nail bed to the larger knuckle. So about 1 inch by 1.25 inches at most. The only problem I have is it stings when I do dishes and I often have a lot of dishes on a regular basis - kids help out 80% of the time so I can't complain. I think I was in denial the first week I saw the ooze. Now I'm just like: "If that's all my 3 year 'anniversary flare' is going to amount to then bring it!!"
So many people with TSW complain of anniversary flares. I can't wrap my head around how this can be from a medical point of view. I have heard all the arguments and theories on why these occur but none of them make sense. But it is what it is! I'm just very thankful mine is so isolated!!!
That is all I have to report! Going away soon on a trip! More on that soon! Hope y'all are finding some peace and pain free days!
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