Please someone remind me of this post if I ever mention using anything on my skin ever again!!! The first few days of using the oil and gloves made my hands feel good. They looked like they were healing. Then yesterday things went horribly wrong! My hands started burning and the pain was like the very beginning!! And let's not talk about the swelling and oozing!! Oh boy! I was MAD, ANGRY, CRYING, and basically really pissed off at myself!!
Fast forward to today going through moisturizer withdrawal again on my hands. The pain is extreme...no more than I have dealt with in the past but to go from little pain to this in one day is too much. Again the rest of my body is flare - free. This is not a flare, but definitely a reaction to putting something on my skin. Please excuse me for a few days....writing this is killing my fingers. I will be taking time off of work, not answering emails, or even blogging. I plan to rest my hands as much as possible so I can get back to work and my life.
And sorry Joey....I appreciate your response....but when you wrote you wore the gloves for 2 YEARS, I thought there was just no way I can do that. I know we all have to do what we have to in order to get through this, but as you know I have little patience....my goal still remains to find answers, not let time go by idle while I wait to heal. I just know MW works really well for me....just have to figure out what to do with my hands AND be able to work. Next experiment is in the works....starting in a few days....will write about it and whether I have success or not next week.
For now, stay strong everyone. I WILL have my life back again very soon.
Oh, and pictures....hahaha that's a joke right now.
Thursday, January 30, 2014
Tuesday, January 28, 2014
My Hands and The NEA!
A lot to write about today!
First my hands are doing WAY better! If you read my last post and the comments you will see that I am experimenting with Joey Brown's way of healing the hands - an oil and gloves on 24/7. Some people have had problems with severe itching and blisters. I think it may come down to what stage you are in - I'm 11.5 months in and have made HUGE progress with my overall skin. But my hands take a beating 3 days a week with my job. I know not using moisturizer is a sound way to help alleviate some of the terrible symptoms of TSW for some. It definitely was a bonus for me. But my hands were to the point of a horror show! I did one whole day and night of organic vegetable shortening on my hands under nitrile gloves. Then I worked a 12 hour shift yesterday. My hands only itched when I took the gloves off. I did my best to just rub them under cold water and that helped me not to scratch at them. While working, I noted they were starting to crack open more. Before going to work and after removing the gloves, my hands looked over 50 % healed. But throughout the day I would say I went backwards another 25% - so last night upon coming home, my hands were 25% better than the day before. Not bad. So I donned the gloves and shortening again last night and changed them today - had some itching but that was relieved as soon as the gloves were put back on. I should have taken pictures, but wanted to get the gloves on right away. So pictures will wait another day or 2. I am VERY happy at the progress. Now my hands have that white wrinkled, "I've been in water way too long" look so I cut way back on the shortening and only put a thin layer on the necessary areas. But the cracks and sores are 75% cleared. Hoping 2 more days of this will bring some much needed relief!
Now for the National Eczema Association (NEA). As many of you know they have set up a task force to investigate TSA/TSW. It is an amazing opportunity for us to be heard in the realm of medical professionals. I personally wrote an email to them regarding my theory about the MTHFR gene mutation and how I believe it may factor into TSA. I received a response from the NEA and was happy to hear they will be forwarding my email to the task force. I think having them investigate TSA/TSW can lead to more studies and better awareness about the dangers of over-prescribing topical steroids. You can go to their website and just send an email explaining you are suffering with TSW and that you appreciate them looking into it further. The more they hear, the more they may do.
Here is a copy of what I wrote to them and their response:
Dear NEA,
I am responding to your recent post about developing a task force regarding topical steroid addiction. I am a registered nurse who has been going through topical steroid withdrawal for the last 11 months. I have had eczema since infancy and have been prescribed steroid creams for 30 years.
I would like to offer my opinion as to why topical steroid addiction occurs in some people and not others. I know many people who have used steroid creams for months at a time and then stopped with no withdrawal symptoms. I have been to see a Naturopathic Doctor who also has a degree in molecular and cellular biology. I expressed my theory that those suffering with topical steroid withdrawal (TSW) have something wrong within the DNA or the RNA of the skin cells. He ended up testing me for what is called the MTHFR gene mutation. The MTHFR gene is responsible for many things, but it basically balances the homocysteine levels in the body and helps turn specific B vitamins into their active forms. When there is a mutation in this gene, any number of disease processes can occur in the body. The end result is that the body cannot process certain B vitamins and therefore glutathione cannot be produced at a normal level. And homocyteine levels rise causing widespread inflammation. The glutathione is responsible for cellular repair and cleansing. If not enough is produced, the cells cannot eliminate toxins properly and repair themselves. I believe this is what people with TSW are experiencing.
I have been under treatment for this gene mutation for over 3 months now and it turned my TSW from a living nightmare into a slight nuisance. One other person with TSW told me she too was diagnosed with MTHFR gene mutation and once taking active B vitamins, her skin made a big turn around for the better. 30% of the population is estimated to have one form of this mutation. It would serve the TSW community well if we could get funding for a research study on the MTHFR gene mutation. If many more of us test positive and show significant improvement with just taking active B vitamins, then there would be no reason for this controversy to go any further. If it is the cause for TSW, then all that would be needed is a simple blood test for those patients being diagnosed with eczema. If they test positive, then their doctor knows topical steroids might be harmful to that patient.
Currently there are at least 5-6 people that I know personally just taking the active B vitamins based on my success. They are in the process of getting tested for the gene mutation. They are all showing signs of improvement that they had not seen prior to starting the vitamins.
All I ask is for your consideration into this matter. You are a big organization trying to bring awareness to the public about eczema. This could help those with TSW to find relief sooner. So many people have offered promises that such-and-such cream will help them only to find out that it does very little for our symptoms. This is not a miracle cure. But if proven right, it could change how eczema and TSW is treated.
Thank you for your time,
Tracy Scarpulla, RN, BSN
www.stoppingtopicalsteroids.blogspot.com
First my hands are doing WAY better! If you read my last post and the comments you will see that I am experimenting with Joey Brown's way of healing the hands - an oil and gloves on 24/7. Some people have had problems with severe itching and blisters. I think it may come down to what stage you are in - I'm 11.5 months in and have made HUGE progress with my overall skin. But my hands take a beating 3 days a week with my job. I know not using moisturizer is a sound way to help alleviate some of the terrible symptoms of TSW for some. It definitely was a bonus for me. But my hands were to the point of a horror show! I did one whole day and night of organic vegetable shortening on my hands under nitrile gloves. Then I worked a 12 hour shift yesterday. My hands only itched when I took the gloves off. I did my best to just rub them under cold water and that helped me not to scratch at them. While working, I noted they were starting to crack open more. Before going to work and after removing the gloves, my hands looked over 50 % healed. But throughout the day I would say I went backwards another 25% - so last night upon coming home, my hands were 25% better than the day before. Not bad. So I donned the gloves and shortening again last night and changed them today - had some itching but that was relieved as soon as the gloves were put back on. I should have taken pictures, but wanted to get the gloves on right away. So pictures will wait another day or 2. I am VERY happy at the progress. Now my hands have that white wrinkled, "I've been in water way too long" look so I cut way back on the shortening and only put a thin layer on the necessary areas. But the cracks and sores are 75% cleared. Hoping 2 more days of this will bring some much needed relief!
Now for the National Eczema Association (NEA). As many of you know they have set up a task force to investigate TSA/TSW. It is an amazing opportunity for us to be heard in the realm of medical professionals. I personally wrote an email to them regarding my theory about the MTHFR gene mutation and how I believe it may factor into TSA. I received a response from the NEA and was happy to hear they will be forwarding my email to the task force. I think having them investigate TSA/TSW can lead to more studies and better awareness about the dangers of over-prescribing topical steroids. You can go to their website and just send an email explaining you are suffering with TSW and that you appreciate them looking into it further. The more they hear, the more they may do.
Here is a copy of what I wrote to them and their response:
Dear NEA,
I am responding to your recent post about developing a task force regarding topical steroid addiction. I am a registered nurse who has been going through topical steroid withdrawal for the last 11 months. I have had eczema since infancy and have been prescribed steroid creams for 30 years.
I would like to offer my opinion as to why topical steroid addiction occurs in some people and not others. I know many people who have used steroid creams for months at a time and then stopped with no withdrawal symptoms. I have been to see a Naturopathic Doctor who also has a degree in molecular and cellular biology. I expressed my theory that those suffering with topical steroid withdrawal (TSW) have something wrong within the DNA or the RNA of the skin cells. He ended up testing me for what is called the MTHFR gene mutation. The MTHFR gene is responsible for many things, but it basically balances the homocysteine levels in the body and helps turn specific B vitamins into their active forms. When there is a mutation in this gene, any number of disease processes can occur in the body. The end result is that the body cannot process certain B vitamins and therefore glutathione cannot be produced at a normal level. And homocyteine levels rise causing widespread inflammation. The glutathione is responsible for cellular repair and cleansing. If not enough is produced, the cells cannot eliminate toxins properly and repair themselves. I believe this is what people with TSW are experiencing.
I have been under treatment for this gene mutation for over 3 months now and it turned my TSW from a living nightmare into a slight nuisance. One other person with TSW told me she too was diagnosed with MTHFR gene mutation and once taking active B vitamins, her skin made a big turn around for the better. 30% of the population is estimated to have one form of this mutation. It would serve the TSW community well if we could get funding for a research study on the MTHFR gene mutation. If many more of us test positive and show significant improvement with just taking active B vitamins, then there would be no reason for this controversy to go any further. If it is the cause for TSW, then all that would be needed is a simple blood test for those patients being diagnosed with eczema. If they test positive, then their doctor knows topical steroids might be harmful to that patient.
Currently there are at least 5-6 people that I know personally just taking the active B vitamins based on my success. They are in the process of getting tested for the gene mutation. They are all showing signs of improvement that they had not seen prior to starting the vitamins.
All I ask is for your consideration into this matter. You are a big organization trying to bring awareness to the public about eczema. This could help those with TSW to find relief sooner. So many people have offered promises that such-and-such cream will help them only to find out that it does very little for our symptoms. This is not a miracle cure. But if proven right, it could change how eczema and TSW is treated.
Thank you for your time,
Tracy Scarpulla, RN, BSN
www.stoppingtopicalsteroids.blogspot.com
Dear Tracy,
Thank you so much for sharing this information with the National Eczema Association. We are very interested in your experience and appreciate hearing from you directly.
First, I wish you well in your withdrawal; as I understand it, there is no easy way through it. Secondly, I have shared your email with our TSA Task Force. One of the next steps they would like to address is classification of the different clinical withdrawal subtypes, of which you have perhaps identified one. We have a lot more work to do to help empower people to make the best decisions possible for eczema treatment.
Please, Tracy, I hope you will stay in touch. I will keep our community updated on the Task Force work.
My best,
Julie
Sunday, January 26, 2014
Going against MW for my hands
I have been busy working....have had quite a few mini-flares on my arms, hands, and neck. No new areas...just the same old areas that keep being affected. No big deal given how I have my life back. BUT my hands flared on top of their already agitated selves. I was in agony last night when I got home from work...I have tried tea tree oil, apple cider vinegar, and some anti-bacterial concoction from my ND. Nothing seems to help. So I brought some gloves home from work that don't bother me, slathered my hands in organic vegetable shortening, and put the gloves on....wearing them all day. All I know is today is the first day in months my hands did not hurt!! I will do this for my 3 days off starting Tuesday and report back to you all! I tried the MW on my hands but I think washing them so much at work was defeating the no moisturizer effect. Somehow I think too much water is not good either. And right now not working is not an option. So I have to find something to relieve the pain in my hands! Good news is the rest of my skin is doing really well!
The gloves I am using - non-latex with no powder
Back of left hand already looking and feeling better.
Wednesday, January 22, 2014
New pictures of supplements...
Today I updated my TSW study page with new pictures of the supplements I am now taking. You have to scroll towards the bottom of the page to get the update. A few things have changed due to my never ending research. But for now this is where I am at: http://stoppingtopicalsteroids.blogspot.com/p/tsw-study-page.html
I was supposed to work today....not happening! Hubby and I changed shifts so I will still work full time this week and not lose hours, but seriously there is no way I was able to work today and it had very little to do with my hands! I ended up getting my period last night...an hour before I had mad crazy itching. It happened to correspond with eating so initially I thought that was the culprit. But unfortunately I had a series of itch attacks all night probably from my hormones - happens every single month! My itching starts intensifying during the PMS period, then when the period begins, I get insane itching for a day or 2, then I get a very calm period lasting quite a few days.
I'm not sure if I should classify this as a flare given there is no oozing or swelling. But the itching has caused me to rip open all old scabs. And the itching is insane! I was up every 1-2 hours with an itch attack. This morning they have abated...no itch attack since 6 am...that's 5 hours of no more itching, so I think it is over. But being up most of the night has exhausted me....working a 12 hour shift seems too overwhelming right now. My hubby just offered to work for me...I didn't even have to ask - it was quite clear I could barely keep my eyes open.
I have noticed that for the last month or so my sores are not healing well. They seem to be taking longer to close up. One major thing I stopped was the glutathione. Hubby noticed this as well and encouraged me to start back on it. I hate taking any pill or supplement, so I have been trying to reduce my intake of them. The glutathione is something the body makes on its own when it has the proper active B's. So I thought I could stop the glutathione since increasing my active B's. But glutathione is responsible for cleansing and repairing cells. So I think given the severity of my gene mutation, I may still not be producing enough of my own glutathione given how damaged my whole body must be. I started back on the glutathione this morning - a few weeks time and I will re-evaluate the condition of my sores.
I was supposed to work today....not happening! Hubby and I changed shifts so I will still work full time this week and not lose hours, but seriously there is no way I was able to work today and it had very little to do with my hands! I ended up getting my period last night...an hour before I had mad crazy itching. It happened to correspond with eating so initially I thought that was the culprit. But unfortunately I had a series of itch attacks all night probably from my hormones - happens every single month! My itching starts intensifying during the PMS period, then when the period begins, I get insane itching for a day or 2, then I get a very calm period lasting quite a few days.
I'm not sure if I should classify this as a flare given there is no oozing or swelling. But the itching has caused me to rip open all old scabs. And the itching is insane! I was up every 1-2 hours with an itch attack. This morning they have abated...no itch attack since 6 am...that's 5 hours of no more itching, so I think it is over. But being up most of the night has exhausted me....working a 12 hour shift seems too overwhelming right now. My hubby just offered to work for me...I didn't even have to ask - it was quite clear I could barely keep my eyes open.
I have noticed that for the last month or so my sores are not healing well. They seem to be taking longer to close up. One major thing I stopped was the glutathione. Hubby noticed this as well and encouraged me to start back on it. I hate taking any pill or supplement, so I have been trying to reduce my intake of them. The glutathione is something the body makes on its own when it has the proper active B's. So I thought I could stop the glutathione since increasing my active B's. But glutathione is responsible for cleansing and repairing cells. So I think given the severity of my gene mutation, I may still not be producing enough of my own glutathione given how damaged my whole body must be. I started back on the glutathione this morning - a few weeks time and I will re-evaluate the condition of my sores.
Monday, January 20, 2014
Slow typing & ND visit...
I am very slow to type today and the next few days....so I will keep this short and will have to answer questions in a few days, along with responding to all the new blog posts out there....so many good ones recently too!
You see I have my hands wrapped in socks so typing is very difficult at the moment. My hands have been bad for months due to going back to work. Every other part of my body has been up and down with the micro flares but the hands are just not catching a break. So off I went to my ND....great guy! He gave me a script for keflex, but holding off on starting that at the moment since antibiotics do a number on my gut. He and I both agreed I have a secondary infection going on with my hands. So he gave me Bactroban ointment along with an herbal anti-microbial/anti-fungal. It has goldenseal and a few Chinese herbs in it. I open a few of those capsules and mix with the Bactroban and form a weird smelling paste. I then apply to my hands and put socks on. I've done it only at night the last 2 nights and so far so good. Worked this weekend so hands are up and down....overall I'd say they are better, but going to do this for a week and see what happens. If they don't start getting a lot better then I will take the keflex. On my days off I will re-apply in the mornings and keep socks on all day. Hence why typing is hard...socks really keep me from doing a lot of things easily!!!
So off I go doing not much today! :p
You see I have my hands wrapped in socks so typing is very difficult at the moment. My hands have been bad for months due to going back to work. Every other part of my body has been up and down with the micro flares but the hands are just not catching a break. So off I went to my ND....great guy! He gave me a script for keflex, but holding off on starting that at the moment since antibiotics do a number on my gut. He and I both agreed I have a secondary infection going on with my hands. So he gave me Bactroban ointment along with an herbal anti-microbial/anti-fungal. It has goldenseal and a few Chinese herbs in it. I open a few of those capsules and mix with the Bactroban and form a weird smelling paste. I then apply to my hands and put socks on. I've done it only at night the last 2 nights and so far so good. Worked this weekend so hands are up and down....overall I'd say they are better, but going to do this for a week and see what happens. If they don't start getting a lot better then I will take the keflex. On my days off I will re-apply in the mornings and keep socks on all day. Hence why typing is hard...socks really keep me from doing a lot of things easily!!!
So off I go doing not much today! :p
Friday, January 17, 2014
Cost of Supplements & Holding your breath!
I thought I would break down once again the cost of the supplements I am taking for my MTHFR gene mutation. In the right sidebar is a new video I uploaded on my blog on this mutation. It is full of GREAT information, however can be difficult to follow at times. I have viewed it twice and learned more in my 2nd viewing!
For those wishing to get tested, one only has to ask their doctor to be tested for MTHFR. Some countries may not offer this. However here in the U.S. it is available through most labs (with a script from your MD). The cost I have learned is approximately $150 out of pocket. Not horrible, but pricey for most. It will give a clear indication of the specific mutation in the chain. Since there are many variations, it may be worth the money. However for those who want to try the supplements without testing, I have broken down the absolute necessary supplements into a monthly figure. These are the supplements that IF you do have the MTHFR gene mutation, should help alleviate your TSW symptoms like it has mine. If you don't I have no clue if it will help or not. I do know that the supplements have very few side effects. The B vitamins that are listed are water soluble meaning any excess the body does not need will be excreted.
I have been on these supplements consistently for 3 months now. I have seen my skin go from really really bad to not so bad at all in the first month. I have been living at this not so bad phase now and my only thing I can complain about are my hands...still horrible but I went back to work and since returning to work where I must wash my hands over 60-70 times in one shift with harsh chemicals, my hands have been really bad. I can't say if it's TSW or the harsh chemicals - probably a combo of both.
The one thing to keep in mind is IF you have the mutation and start on these supplements, you will be healing ALL your cells, not just your skin cells. Therefore, your healing may differ from mine. If you have more internal cellular damage, it may take longer than a few weeks to see initial improvement. So please bear that in mind.
So here are the very basic necessities for those with the MTHFR gene mutation (I take more supplements than this for basic health):
L 5-MTHF by Seeking Health - 1 mg (1,000 mcg) twice a day
$17.95 (on Amazon.com) for 60 caps - will last 30 days
Active B12 Lozenge with L 5-MTHF by Seeking Health - 1 mg and 800 mcg respectively twice a day
$19.95 for 60 tabs to last for 30 days (this will give you a total of 3.6 mg L 5-MTHF the active form of folic acid - this will be useless without the active B12 so taking them together is good and taking extra L 5:MTHF is good for those with the worst gene mutation).
NAC by PURE - 600 mg twice a day
$44.20 for 180 caps or 90 days worth - $14.73 per month
MSM powder by Solger - 5-10 grams per day split in 2 doses
$10.38 per bottle - will last a month or slightly less at the 10 gm dose.
So that is all...in total it works out to $63.01 per month. Not sure whether it is high or low compared to other things people have tried. For me it is more than worth it given I have been able to return to work. I have also gotten my life back - doing family things, exercising again, and so forth. You must also know I am doing things along with these supplements to help my skin - including moisturizer withdrawal (the next best thing you can do for TSW skin and tanning).
As for holding your breath - I am referring to all those who are waiting to see if I succeed or fail with this treatment. I get it - I really do because I held my breath for the first 2-3 months on these supplements. However with the research I continue to do on this gene mutation, I am more and more convinced each day that I will not suffer any major setbacks. Yes I will flare slightly - but the few flares I have had in the last 3 months, I have been able to work and function. The flares are nothing compared to before taking the supplements. I mean NOTHING! I will have a burning sensation briefly...now it lasts barely an hour and is localized to a few spots now. I still itch but the itching is reduced by over 75%. The pain is reduced by over 95% - I consider the small burning patches from time to time in the pain category. My skin breakage has been reduced by about 60-70% depending on my micro-flares.
So you can continue to hold your breath waiting for the other shoe to drop per se. But for me I decided that I can breathe freely now knowing I have conquered this beast. Do I fear a relapse? Well sure to some extent. When I have a micro flare, I will get a few minute phase where I think "What if it's coming back?" (meaning the big ugly flare). But it's now a passing thought - so short that I don't hold my breath at all anymore. I have moved on with my life...not allowing the annoying left over few spots to bother me.
I bought new running sneakers...and a beginner's book on running. Yep, I'm going to RUN!! I have been using my elliptical and will continue to do so on really bad weather days. But I am going to be the runner I always wanted to be. I was in track in HS...the fast sprinter as I could never run far. Distance running was out of the question with my so-called asthma - the asthma that is now completely gone! So I bought 2 beginner books and have started walking. Typically hubby and I will watch a show on Netflix when one of us comes home from work and before bed. But I told him yesterday that we are both getting in shape together. From now on we will be walking before bed....not the ideal time but we are both not morning people so mornings before work will be very difficult. Last night we ventured out and walked about 3/4 mile. Going to start walking sprints, then running spurts to build up my ability to run further.
Looking forward to a very bright future!! :)
For those wishing to get tested, one only has to ask their doctor to be tested for MTHFR. Some countries may not offer this. However here in the U.S. it is available through most labs (with a script from your MD). The cost I have learned is approximately $150 out of pocket. Not horrible, but pricey for most. It will give a clear indication of the specific mutation in the chain. Since there are many variations, it may be worth the money. However for those who want to try the supplements without testing, I have broken down the absolute necessary supplements into a monthly figure. These are the supplements that IF you do have the MTHFR gene mutation, should help alleviate your TSW symptoms like it has mine. If you don't I have no clue if it will help or not. I do know that the supplements have very few side effects. The B vitamins that are listed are water soluble meaning any excess the body does not need will be excreted.
I have been on these supplements consistently for 3 months now. I have seen my skin go from really really bad to not so bad at all in the first month. I have been living at this not so bad phase now and my only thing I can complain about are my hands...still horrible but I went back to work and since returning to work where I must wash my hands over 60-70 times in one shift with harsh chemicals, my hands have been really bad. I can't say if it's TSW or the harsh chemicals - probably a combo of both.
The one thing to keep in mind is IF you have the mutation and start on these supplements, you will be healing ALL your cells, not just your skin cells. Therefore, your healing may differ from mine. If you have more internal cellular damage, it may take longer than a few weeks to see initial improvement. So please bear that in mind.
So here are the very basic necessities for those with the MTHFR gene mutation (I take more supplements than this for basic health):
L 5-MTHF by Seeking Health - 1 mg (1,000 mcg) twice a day
$17.95 (on Amazon.com) for 60 caps - will last 30 days
Active B12 Lozenge with L 5-MTHF by Seeking Health - 1 mg and 800 mcg respectively twice a day
$19.95 for 60 tabs to last for 30 days (this will give you a total of 3.6 mg L 5-MTHF the active form of folic acid - this will be useless without the active B12 so taking them together is good and taking extra L 5:MTHF is good for those with the worst gene mutation).
NAC by PURE - 600 mg twice a day
$44.20 for 180 caps or 90 days worth - $14.73 per month
MSM powder by Solger - 5-10 grams per day split in 2 doses
$10.38 per bottle - will last a month or slightly less at the 10 gm dose.
So that is all...in total it works out to $63.01 per month. Not sure whether it is high or low compared to other things people have tried. For me it is more than worth it given I have been able to return to work. I have also gotten my life back - doing family things, exercising again, and so forth. You must also know I am doing things along with these supplements to help my skin - including moisturizer withdrawal (the next best thing you can do for TSW skin and tanning).
As for holding your breath - I am referring to all those who are waiting to see if I succeed or fail with this treatment. I get it - I really do because I held my breath for the first 2-3 months on these supplements. However with the research I continue to do on this gene mutation, I am more and more convinced each day that I will not suffer any major setbacks. Yes I will flare slightly - but the few flares I have had in the last 3 months, I have been able to work and function. The flares are nothing compared to before taking the supplements. I mean NOTHING! I will have a burning sensation briefly...now it lasts barely an hour and is localized to a few spots now. I still itch but the itching is reduced by over 75%. The pain is reduced by over 95% - I consider the small burning patches from time to time in the pain category. My skin breakage has been reduced by about 60-70% depending on my micro-flares.
So you can continue to hold your breath waiting for the other shoe to drop per se. But for me I decided that I can breathe freely now knowing I have conquered this beast. Do I fear a relapse? Well sure to some extent. When I have a micro flare, I will get a few minute phase where I think "What if it's coming back?" (meaning the big ugly flare). But it's now a passing thought - so short that I don't hold my breath at all anymore. I have moved on with my life...not allowing the annoying left over few spots to bother me.
I bought new running sneakers...and a beginner's book on running. Yep, I'm going to RUN!! I have been using my elliptical and will continue to do so on really bad weather days. But I am going to be the runner I always wanted to be. I was in track in HS...the fast sprinter as I could never run far. Distance running was out of the question with my so-called asthma - the asthma that is now completely gone! So I bought 2 beginner books and have started walking. Typically hubby and I will watch a show on Netflix when one of us comes home from work and before bed. But I told him yesterday that we are both getting in shape together. From now on we will be walking before bed....not the ideal time but we are both not morning people so mornings before work will be very difficult. Last night we ventured out and walked about 3/4 mile. Going to start walking sprints, then running spurts to build up my ability to run further.
Looking forward to a very bright future!! :)
Wednesday, January 15, 2014
A Very HAPPY 11 Months to me!!!
Yesterday marked my 11th month anniversary of TSW. Next month will be one full year off of topical steroids! I spent the last 2 days working my 12 hour shifts. Crazy busy days! I had a series of micro flares - lasting at most 2-3 hours each. The only areas still with some oozing would be my fingers. Even the back of my hands while still flaring -red and swollen - have not oozed. The classic sign for oozing for me is lint filled sores. I have had scant oozing on my micro-flares the last few months - the only way I know I have oozed is the lint from my clothes will stick to the ooze. But these past few days, I have had no lint at all in my broken open sores. My micro flares on my body now consist of 1-3 hours of intense itching with me trying really hard not to scratch, but I end up breaking down and tearing at my skin for 1-2 minutes, breaking open old scabs. So my pictures below will show the various areas of newly broken skin. But I have also included a few areas of perfect skin to show that things are going VERY well! I couldn't be happier with my progress! Even my fatigue is lifting more each day. Today I should be exhausted from my 2 very busy shifts. But I slept 8 hours from 2 am til 10 am, got up, did some paperwork and bills, made breakfast, took pictures, and now blogging! That's a lot considering I don't ever really start moving until after noon. But the best tell tale sign this week of my fatigue lifting is my mental clarity. It seems all my mental clarity and physical energy I had went to my 3 shifts a week at work these last few months, but I feel the tide shifting the past few weeks where I have more energy each day I have off. And today I feel my mental clarity coming back - before on my days off I would do a lot of resting as my mind and body were so exhausted from working and healing. But I think my body has a lot less to heal now. The lack of oozing (except my hands) is a great sign, as well as the short lived flaring. I will probably have a problem with my hands for long while given the extensive hand washing at work I have to do. The special gloves are so much easier on my skin but I can't use my own soap - I have to use the hospital's soap - and that stuff is HARSH! The tanning is doing wonders for the healing as well - a lot of sores have healed nicely and I think the tanning is keeping my hands from getting too out of control. Also as a side note: I have no new areas of flaring or breaking open skin....all flaring the last 2 months have been on what I call my problem areas. I have no spreading at all of my TSW. Some problem areas are now perfectly clear and have had no micro flaring at all the last month (like my inner thighs, upper back/shoulders, back of knees).
So without further ado...here are my 11 month pictures taken only an hour or so ago:
So without further ado...here are my 11 month pictures taken only an hour or so ago:
Gotta love the tanning goggle look!
Neck irritated but no longer pink/red...just some sores healing.
Left hand is the worst area on my body right now!
Right hand better than left but still has a ways to go!
Left inner arm with a micro flare 2 days ago.
Right inner arm with no flaring the last week or so.
Right inner leg with healing sores...ankle had a few micro flares the last week.
Left inner leg very similar to right leg.
My outer parts of both legs and arms look like this...perfectly clear!!!
Upper legs and upper arms are also perfectly clear!
Lower back has been a problem area - but it is nearly healed - just a few sores that have been flaring.
Sunday, January 12, 2014
Another micro-flare but barely noticeable!
I had another micro-flare that started yesterday evening....just about over I think. I barely noticed it. I had flaring with a tad bit of ooze on my L forefinger, part of the top of L hand, small spot on inner R arm, spot on L side of neck, and 2 sores on my lower R leg/ankle. We are talking spots no bigger than 2-3 cm long. I was itching more than usual last night telling hubby that I thought I was probably flaring. But it was really not that bad and lasted less than an hour. My hands are still doing better than before but are still very dry and cracked from work. The rest of me is doing great. The neck spot is annoying as are my ankles, but aside from those areas, nothing bothers me. I am going about my days now easier and getting more and more done.
Today I went tanning first thing in the morning. I then did a bit of cleaning around the dining area so I could bring out my new Excalibur dehydrator! I am so excited to have this! I bought it for making fruit snacks and yogurt, Since fruit is not in season, I thought I would try my hand at the yogurt. So I sterilized my mason jars, heated up my raw milk to 110 degrees, and then put it a few teaspoons of organic greek yogurt. I then poured the milk mixture into the mason jars and set them in the dehydrator at 115 degrees for 12 hours. I cannot wait to see how it comes out! I was using the thermos method but my thermos was so difficult to clean along with the straining of the yogurt. I now can put a piece of cheesecloth over the opening of the jar and drain the whey out that way...no extra dishes to clean. We are on a mission to really start eating even better. Lots of probiotic rich foods are in our future. Hubby and I plan to learn how to make something new every few weeks. Next on my list is kombucha. :)
So here is a pic from yesterday...during my tiny flare my face was barely affected, if at all. My hair is growing like a weed! I plan to get myself into a spa soon...hair, nails, waxing, massage, the works!! I plan to pamper myself after this year of hell. Sounds selfish, I know, but I do this only once a year if that....and only in the last few years. I am not one to spend money on myself. After this spring, life is going to get REALLY busy! When we move to our 68 acres, we plan on starting a homestead....big garden, chickens, cows, you name it! We are also getting a 2nd dog. We will be out in the mountains/hills of KY where wild life roam. The kids will need a bit of protection when out playing or exploring. So in a few weeks we will be adding a puppy to our family. Boy oh boy....lots of work ahead!!! :)
Today I went tanning first thing in the morning. I then did a bit of cleaning around the dining area so I could bring out my new Excalibur dehydrator! I am so excited to have this! I bought it for making fruit snacks and yogurt, Since fruit is not in season, I thought I would try my hand at the yogurt. So I sterilized my mason jars, heated up my raw milk to 110 degrees, and then put it a few teaspoons of organic greek yogurt. I then poured the milk mixture into the mason jars and set them in the dehydrator at 115 degrees for 12 hours. I cannot wait to see how it comes out! I was using the thermos method but my thermos was so difficult to clean along with the straining of the yogurt. I now can put a piece of cheesecloth over the opening of the jar and drain the whey out that way...no extra dishes to clean. We are on a mission to really start eating even better. Lots of probiotic rich foods are in our future. Hubby and I plan to learn how to make something new every few weeks. Next on my list is kombucha. :)
So here is a pic from yesterday...during my tiny flare my face was barely affected, if at all. My hair is growing like a weed! I plan to get myself into a spa soon...hair, nails, waxing, massage, the works!! I plan to pamper myself after this year of hell. Sounds selfish, I know, but I do this only once a year if that....and only in the last few years. I am not one to spend money on myself. After this spring, life is going to get REALLY busy! When we move to our 68 acres, we plan on starting a homestead....big garden, chickens, cows, you name it! We are also getting a 2nd dog. We will be out in the mountains/hills of KY where wild life roam. The kids will need a bit of protection when out playing or exploring. So in a few weeks we will be adding a puppy to our family. Boy oh boy....lots of work ahead!!! :)
I will be taking more close ups of various areas after these next few days I have to work. But notice the neck? Looking and feeling great!!
Friday, January 10, 2014
Doing REALLY Good!
I had another micro-flare...when the itching increased and the ooze started coming out in a few places, I thought "Oh no, here we go again". But happy to report it lasted all of 24 hours and yesterday and today there is no flaring. The flare occurred in the same problem areas...no new areas! And the flaring only affected about 25-50% of the problem areas compared to the last mini-flare I had a few weeks back in December. The back of my hands are seeing small improvements daily even through the micro-flare. My chin had a very small red area with no ooze at all. My left ear had small amount of oozing and swelling but is now healing. My neck only flared on the left side....the small patch in front is nearly all healed....a few more days and it should be clear. My arms only have a few areas of broken skin this time and are already nearly healed over. My legs flared only at the ankles...the other scabs are healing. My low back and belly button area had a few sores that oozed but it was almost undetectable...skin is healing now.
Overall I am feeling really good! I still would love more energy, but even that is coming back a little every day. I am not as tired at work and my days off I am able to do more and think more. I am still taking it easy on my days off, but still exercising a few times a week and trying to do a few more things each day. I just don't want to overdue it. I felt I went back to work a little too soon....needed more rest for my body to heal. So I am finding my energy levels improving nicely when I force myself to rest instead of pushing myself to the limit each day. For me it is finding the right balance. I know a few people who became ill and then were too afraid to do anything when they got well. They became lazy out of fear. I don't want that to be me so I end up doing the opposite and pushing myself. But that backfires on me from time to time so now I have learned to find a healthy balance and right now with TSW, I really need to find a balance. :)
I think I am going to put my surprise trip on hold....I no longer feel the need to go to the ocean for further healing. The tanning is working really well. We are in the process of building our home on our 68 acres and it is going to be a very busy next few months. I think we could use the money more wisely for that right now. It would be wonderful to take a vacation with hubby, but it would be so much easier after we move!
Well that's all for now...going to try out my new food dehydrator for making yogurt! So happy to have the energy to do it! :)
Overall I am feeling really good! I still would love more energy, but even that is coming back a little every day. I am not as tired at work and my days off I am able to do more and think more. I am still taking it easy on my days off, but still exercising a few times a week and trying to do a few more things each day. I just don't want to overdue it. I felt I went back to work a little too soon....needed more rest for my body to heal. So I am finding my energy levels improving nicely when I force myself to rest instead of pushing myself to the limit each day. For me it is finding the right balance. I know a few people who became ill and then were too afraid to do anything when they got well. They became lazy out of fear. I don't want that to be me so I end up doing the opposite and pushing myself. But that backfires on me from time to time so now I have learned to find a healthy balance and right now with TSW, I really need to find a balance. :)
I think I am going to put my surprise trip on hold....I no longer feel the need to go to the ocean for further healing. The tanning is working really well. We are in the process of building our home on our 68 acres and it is going to be a very busy next few months. I think we could use the money more wisely for that right now. It would be wonderful to take a vacation with hubby, but it would be so much easier after we move!
Well that's all for now...going to try out my new food dehydrator for making yogurt! So happy to have the energy to do it! :)
Monday, January 6, 2014
Healing Pictures and Update
Lots of good news to share!!!!
First I have been very busy this past week! All my extra time is spent on the phone! Hubby and I purchased 68 acres on Kentucky a few years ago so we can have our own homestead. We had planned to build a home there this past year but with me going through TSW and not being able to work, those plans were put on hold. Well this year my parents decided to come live with us in KY. My dad planned to retire this year and they would move in with us at some point. Well dad up and retired for the end of January. So we now plan to get moving on our plans a little sooner than expected (we were going to wait until we had built up our savings again, but now that's not necessary). So the past week has been filled with tons of phone calls....thankfully hubby and I had already talked to lots of people, had our land perk tested, picked out our builder, and so forth. But actually making the big move to get started is very time consuming! So if I seem to disappear for awhile here and there, more than likely it has to do with our building process and not my skin! :)
Second, my skin is doing very well!!! I still have my areas that I scratch over and over and have a hard time healing. But overall no more actual flaring this week. Lots of healing since my December flare. Pictures below were taken today and below the pictures I will post the link to the post I did on the 19th of December that showed the damage I did with that flare from all the horrendous scratching. I have not had any more micro-flares this week....no oozing, no scratch fests! I just have areas that get itchy a few times a day. You will see my neck and the one area that I scratched this morning just before taking the pics....it doesn't hurt, just irritated. I have been tanning for the last 2 weeks consistently and have seen huge changes! I continue with the no moisturizer AT ALL approach and bathing is 1 dead sea salt bath per week with spot cleaning the other days. I tried Dan's approach with the tea tree oil and not sure it was helping, so I stopped even that. I found some really good bandages to put on my hands at work to protect them from infection and work ordered me special gloves that don't irritate my skin like the regular gloves they have. I am really blessed to be working at such a great place with truly caring people!
And third, I am finally going to get the honeymoon I never had! Hubby doesn't read my blog, so I will let you in on a secret....my plans to go to Florida for January to help heal my skin have now turned into a plan to surprise my hubby with a vacation for him and I in February. My parents will be taking the kids for the week and work is going to give hubby a fake schedule...showing him working during the week I will be away, but actually he will have off along with me and I can surprise him the day we leave!
Overall I have to say things are going VERY well! Life feels like it is going in all the right directions (finally after being stagnant at a standstill for almost a full year!).
Here are my pics from this morning:
First I have been very busy this past week! All my extra time is spent on the phone! Hubby and I purchased 68 acres on Kentucky a few years ago so we can have our own homestead. We had planned to build a home there this past year but with me going through TSW and not being able to work, those plans were put on hold. Well this year my parents decided to come live with us in KY. My dad planned to retire this year and they would move in with us at some point. Well dad up and retired for the end of January. So we now plan to get moving on our plans a little sooner than expected (we were going to wait until we had built up our savings again, but now that's not necessary). So the past week has been filled with tons of phone calls....thankfully hubby and I had already talked to lots of people, had our land perk tested, picked out our builder, and so forth. But actually making the big move to get started is very time consuming! So if I seem to disappear for awhile here and there, more than likely it has to do with our building process and not my skin! :)
Second, my skin is doing very well!!! I still have my areas that I scratch over and over and have a hard time healing. But overall no more actual flaring this week. Lots of healing since my December flare. Pictures below were taken today and below the pictures I will post the link to the post I did on the 19th of December that showed the damage I did with that flare from all the horrendous scratching. I have not had any more micro-flares this week....no oozing, no scratch fests! I just have areas that get itchy a few times a day. You will see my neck and the one area that I scratched this morning just before taking the pics....it doesn't hurt, just irritated. I have been tanning for the last 2 weeks consistently and have seen huge changes! I continue with the no moisturizer AT ALL approach and bathing is 1 dead sea salt bath per week with spot cleaning the other days. I tried Dan's approach with the tea tree oil and not sure it was helping, so I stopped even that. I found some really good bandages to put on my hands at work to protect them from infection and work ordered me special gloves that don't irritate my skin like the regular gloves they have. I am really blessed to be working at such a great place with truly caring people!
And third, I am finally going to get the honeymoon I never had! Hubby doesn't read my blog, so I will let you in on a secret....my plans to go to Florida for January to help heal my skin have now turned into a plan to surprise my hubby with a vacation for him and I in February. My parents will be taking the kids for the week and work is going to give hubby a fake schedule...showing him working during the week I will be away, but actually he will have off along with me and I can surprise him the day we leave!
Overall I have to say things are going VERY well! Life feels like it is going in all the right directions (finally after being stagnant at a standstill for almost a full year!).
Here are my pics from this morning:
These are almost identical shots to the 12/19 pics I took here: http://stoppingtopicalsteroids.blogspot.com/2013/12/flare-subsided-today-but-damage-already.html
I personally see and FEEL a huge difference! I just have to stop scratching my few problem areas and I think my skin will be nearly all healed until the next flare! I'm still betting on a 3-6 more month completely healed time frame which would put me healed by June 2014...this is just a personal prediction based on the level of healing I have already experienced since being treated for the MTHFR gene mutation. But given how much I have healed in 2 weeks since my last flare, I think I stand a good chance of winning my own bet! :) Happy Healing to all!!
Sunday, January 5, 2014
Quick update!
Hi y'all! Just wanted to pop in quickly to say all is well! My skin is doing very well - including my hands! I think the tanning is helping significantly! I have been SUPER busy! I will update in the next day or 2 on my days off with pictures and what is going on that is keeping me so busy! Hoping all my skin warrior friends out there are doing well! Praying for you!
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