Hoping all of you sufferers out there and lurking blog readers have a wonderful start to the new year! Every new year brings upon reflection of the recent past and new hope for the near future. But what happens when we don't want to reflect on the recent past because it's too traumatic to think about? What happens when we don't have much hope for the future because we are in the beginning of a long sentence of suffering? All I can say is allow yourself to be angry, to be sad, to allow yourself to create a hermit-like existence....but never ever lose hope! We all have hit that critical moment when all hope seems lost. We feel like we can't take one step more....as if the complete lack of hope will drive us over into a pit of no return. But somehow, someway we come back, we find a thread, even a skinny lifeless thread....anything to hold onto in the depths of despair. That thread does not have to hold much light....but just enough to bring us off the edge.
So what has brought on such doom and gloom talk at the start of a fresh new year? Have I gone into a wild and crazy flare that is driving me insane? Nope! In fact my skin is awesome. But something made me think of those dark days. This past weekend my parents came for a 2 day visit. We live near Howe's Cave...a neat little cavern 150 feet below the surface. We took a trip there and had a grand time. During the boat trip they like to show you just what complete and total darkness is like. They turn off the lights for about 30-40 seconds....feels like 30-40 minutes as there is no way your vision is going to take in ANYTHING! Complete and total darkness! It's scary because when we turn the lights off at home we give it a few seconds and our eyes adjust to the low light that seems to come from somewhere - anywhere. But not down there in the deep dark cave. Those few seconds of my eyes trying to adjust and my brain saying "Relax, you're not going to see anything....deal with it" were like the beginning of TSW for me. I was in agony from the beginning but hoping I was going to be the one who healed in 6 months! I kept saying to myself, "Just deal with it, it WILL get better". But see, down in that cave after about 10 seconds I was no longer dealing with it....I was turning my head in all directions trying to find ANY source of light. I knew they were going to turn the lights back on eventually but I felt this was long enough...I wanted out. I am not claustrophobic by any means, and I was not starting to panic. Yet I started down that path of "What if?".
Oh yes....the dreaded, "What IF?". What if the lights don't come back on because of power failure? What if we are trapped down here for days...will we go blind? What if my skin doesn't get better and I'm left with this shredding, painful outerbeing that used to be a real person? What if it takes 5 years to heal? What if my spouse leaves me because I'm a mess? Oh those first 6 months were so full of what ifs! I cried every day praying for the agony to end! I was reassured time and time again that I would heal eventually and there was no way to ease the suffering. Time was my only healer. Around the 6th month mark or so I came to that brink of hopelessness. I wanted to die only to just end the suffering. I saw the pain reflected in my husband's and children's eyes. They did all they could for me but they couldn't stop the pain. That was the worst part for all of us....the feeling of helplessness. My family wanted to help end the pain, but they could only stand by and watch as I suffered. I tried to suffer quietly...tried to put on a smiling face....but I failed miserably. TSW wore me down to the marrow of my bones. I had nothing left to give....nothing left to smile about. My whole family was spinning down with me.
And then lo and behold after 20 seconds of pure darkness in the cave, someone's phone lit up inside their pocket. It was so faint but the eyes grabbed that bit of light like a magnet to a piece of metal! It was the briefest moment of joy....mixed with doubt and more what ifs. But then within 10 seconds the lights came back on full force! OH THE JOY! You see I found my glimmer of hope in a local naturopath. I came back from my despair with a determination that I was going to find an easier way through my suffering. I had not suffered a few good days...in fact I remember thinking I was due for 2-3 good days because of my cycle but that month those few good days decided to skip me. I remember thinking I was no longer to going to play the poor me role. I "woke up" if you will and took matters into my own hands. I started researching and theorizing about TSW. I just KNEW there was something everyone was missing. There had to be something that drew us into this suffering that others seemed to skip. How was it that most people could use steroid creams on their bodies for years never getting any worse and never having the steroid creams just stop working? Why were we so special? I figured it had to do with replication of the skin cells - some kind of damage to the RNA of the skin cells. So I found a naturopath that also had a degree in cellular biology..., the kind of guy I was looking for!
My theory was somewhat off but not by much. It had to do with genetics and poor repairing of the cells. Cool! I was on to something. Then treatment began....and the LIGHTS CAME ON! Within a few weeks I saw huge improvements - that were majorly enhanced by stopping all moisturizing at the same time. The pain stopped, the itching calmed to a manageable level, the flares were lasting days and hours, not month after month. My life had returned to an extent.
You see the genetic mutation a lot of us seem to have affects every cell in our body - not just the skin cells. I have spent 2014 trying to heal my whole body. It has paid off in many ways. I still have much healing to do - I can feel it on my tired days. But for the most part I am doing very well!
So hence this year is the year for a new me....a transformation is going to occur. I could try to explain what I mean - but what's in my head does not always translate well into the written word. This transformation is one worth reflecting on. Yet it has only just started to begin! So you will all have to wait until the end of 2015 to see what I mean! The basic aspects are for me to transform into a better mom, a better wife, a better nurse, having a better body, having a healthier family, and being someone I have dreamt up in my head but never delivered fully on. (If that even makes sense!).
Here's to a new and better year for us all! What ever you do, don't ever lose hope! Fight back! Don't follow the crowd and give in to anecdotal "evidence" that says time is your ONLY healer! Fight to find what will work for you! Fight to find an easier way! Just fight!
Wednesday, December 31, 2014
Wednesday, December 17, 2014
22 Months and Pictures!
So here I am with my 22 month update and pictures I have taken over the last few days. I hit the 22 month mark on the 14th. My TSW anniversary is Valentine's Day of all days! So my 2 year mark is approaching. Not worried about it at all. I know many people who have an anniversary flare. Last year about a week or two before my 1 year mark I did experience a flare on my hands, wrists, arms , and ankles. I looked back on those posts today and I CANNOT believe how far my hands have come! Working as a nurse, I used to slather my hands in potent steroid creams to keep them from breaking open and having to deal with infections. I expect if I suffer a 2 year anniversary flare, it will more than likely affect my hands again. I think they will be the last areas to heal. But I have to say they have been doing very well. I experienced a flare on only 2 fingers about 2 months ago and they are now showing signs of healing this past week. I even worked about 24 hours a week over the last 2 months and my flare never got any worse than those 2 fingers.
As for the rest of my skin....dry and itchy probably from the cold winter weather. I still get pink on my face, neck, and arms with dry patches. I have small sores here and there that heal within a few days or a week. I get hives now and again. Sometimes I will have them for a few weeks and then they go away for a few days. I know they get better if I stay away from dairy but with the holidays I personally do not want to worry about following a strict diet. It would cause me more stress so I just try to be reasonable. In the pictures below my face and neck look like they are flaring, yet they feel great to me....very little itching and no burning sensations or even feelings of irritation. I remember taking the pictures a few days ago thinking they were going to come out great with nice clear skin, only to see all the pink and dry patches. I find it frustrating as there were times I would take pictures of my skin thinking the pictures were going to show just how awful I felt only to see semi decent pictures....sometimes pictures cannot truly grasp how bad or even how good the skin really feels. So even though my skin looks irritated, it doesn't feel irritated and that is more important to me than anything!
Recently I have gone through a few weird things. One being a feeling of flaring without any actual problems with my skin. Last week I was having cold and hot flashes for 3-4 days. I felt like I wanted to jump out of my skin but my skin actually felt fine. I had to wear ice packs on my neck for over a week because I felt so over heated. Even my skin felt very warm to the touch....I froze everyone here at home because I con't stand having the heat on. I turned the thermostat down to 64 or 65 degrees those days and still felt hot.
As for my supplements....I have been on and off of them the last few months. I take them only when I experience flaring. The MSM powder really helps calm any inflammation. And when I'm not taking all my supplements, I am taking basic things I would even if not going through TSW, like my probiotics, and my fermented cod liver oil for Vitamin A, D during the winter. I also take my active B's supplement about twice a week. But that's all. I've been so busy this month that I just don't take the time - I probably should stick to most of the supplements even when not flaring, but I don't.
After the holidays my focus will be our diet and doing those last 2 cleanses. I was going to the do the gallbladder cleanse a few weeks ago but didn't because I was experiencing gallbladder pain - I wanted to spend more time softening any possible stones with a few weeks of apple juice. I personally do not want to do a gallbladder cleanse only to move a big stone into one of the ducts and get a blockage. No thanks! I will play it safe and focus on this later. I truly just want to enjoy the holidays!
As for any flares I do experience - they are typically localized to a small area like my chin or one forearm. They last no longer than a day or two with a few exceptions of some lasting 3-4 days. I no longer experience any burning of the skin - all flares now are just on the surface. I truly believe most of my nerves are now healed. Every so often an area will hurt when I move - I figure it's dry skin pulling. I no longer get deep sores - everything seems to be just a few layers deep. I haven't shed a lot of skin at once in many months now. I change my sheets weekly like normal and no longer brush off dead skin. It's just not flaky anymore. I no longer lose a lot of hair at once like I did on and off during TSW. My hair is growing in where I did lose it and feels nice and strong. My nails were badly affected during my first cleanse almost 2 months ago. Half my nails are bumpy and weak. But I've recently started drinking more bone broth and taking a collagen supplement powder so hopefully in a few months my nails will be strong and healthy.
As for the rest of my life....working part time is going very well. Our house is in order. I exercise 3-4 times a week. Kids are doing very well with their schooling. Have great plans for Christmas. And my energy levels are on average very good. I do experience fatigue now and then, but for the most part it doesn't stop me from getting things done. I have been tracking my blood pressure and pulse since starting TSW. The absorption of the steroids over years affect the adrenals in that they falsely lower blood pressure and heart rate. I had concerns that once stopping the steroids I would experience high blood pressure. My blood pressure did get high for me for the first 18 months or so...120- 130/70- 80. My heart rate was elevated in the 80's and 90's at rest. But the last few months of exercising and what not I have noticed a steady decline in blood pressure and heart rate (I get it checked every 2 weeks or so at the grocery store). Well yesterday my BP was 104/66 and my heart rate was 71. I did not sit down for 5 minutes first like they recommend. I was flying around the store and just sat down and hit start. So I am very happy with this as it shows I am responding very well to the exercise! And considering I am over 40 and on no prescription meds nor taking anything to lower my blood pressure, I'd say that's pretty darn good!
One last thing: Just want to say thank you all for reading and supporting me! I was not sure blogging about my journey was the right thing to do, but even this far into TSW, I am still receiving comments and personal emails that make me realize all this blogging is worth it! Just recently I received this comment and it brought tears to my eyes: "Thank you so much for your blog. I recently heard about topical steroid withdrawal. I have not had any steroid medication in about 6 months but still suffering. Your pictures were like looking in the mirror...you give me hope! ..thank you!"
As for the rest of my skin....dry and itchy probably from the cold winter weather. I still get pink on my face, neck, and arms with dry patches. I have small sores here and there that heal within a few days or a week. I get hives now and again. Sometimes I will have them for a few weeks and then they go away for a few days. I know they get better if I stay away from dairy but with the holidays I personally do not want to worry about following a strict diet. It would cause me more stress so I just try to be reasonable. In the pictures below my face and neck look like they are flaring, yet they feel great to me....very little itching and no burning sensations or even feelings of irritation. I remember taking the pictures a few days ago thinking they were going to come out great with nice clear skin, only to see all the pink and dry patches. I find it frustrating as there were times I would take pictures of my skin thinking the pictures were going to show just how awful I felt only to see semi decent pictures....sometimes pictures cannot truly grasp how bad or even how good the skin really feels. So even though my skin looks irritated, it doesn't feel irritated and that is more important to me than anything!
Recently I have gone through a few weird things. One being a feeling of flaring without any actual problems with my skin. Last week I was having cold and hot flashes for 3-4 days. I felt like I wanted to jump out of my skin but my skin actually felt fine. I had to wear ice packs on my neck for over a week because I felt so over heated. Even my skin felt very warm to the touch....I froze everyone here at home because I con't stand having the heat on. I turned the thermostat down to 64 or 65 degrees those days and still felt hot.
As for my supplements....I have been on and off of them the last few months. I take them only when I experience flaring. The MSM powder really helps calm any inflammation. And when I'm not taking all my supplements, I am taking basic things I would even if not going through TSW, like my probiotics, and my fermented cod liver oil for Vitamin A, D during the winter. I also take my active B's supplement about twice a week. But that's all. I've been so busy this month that I just don't take the time - I probably should stick to most of the supplements even when not flaring, but I don't.
After the holidays my focus will be our diet and doing those last 2 cleanses. I was going to the do the gallbladder cleanse a few weeks ago but didn't because I was experiencing gallbladder pain - I wanted to spend more time softening any possible stones with a few weeks of apple juice. I personally do not want to do a gallbladder cleanse only to move a big stone into one of the ducts and get a blockage. No thanks! I will play it safe and focus on this later. I truly just want to enjoy the holidays!
As for any flares I do experience - they are typically localized to a small area like my chin or one forearm. They last no longer than a day or two with a few exceptions of some lasting 3-4 days. I no longer experience any burning of the skin - all flares now are just on the surface. I truly believe most of my nerves are now healed. Every so often an area will hurt when I move - I figure it's dry skin pulling. I no longer get deep sores - everything seems to be just a few layers deep. I haven't shed a lot of skin at once in many months now. I change my sheets weekly like normal and no longer brush off dead skin. It's just not flaky anymore. I no longer lose a lot of hair at once like I did on and off during TSW. My hair is growing in where I did lose it and feels nice and strong. My nails were badly affected during my first cleanse almost 2 months ago. Half my nails are bumpy and weak. But I've recently started drinking more bone broth and taking a collagen supplement powder so hopefully in a few months my nails will be strong and healthy.
As for the rest of my life....working part time is going very well. Our house is in order. I exercise 3-4 times a week. Kids are doing very well with their schooling. Have great plans for Christmas. And my energy levels are on average very good. I do experience fatigue now and then, but for the most part it doesn't stop me from getting things done. I have been tracking my blood pressure and pulse since starting TSW. The absorption of the steroids over years affect the adrenals in that they falsely lower blood pressure and heart rate. I had concerns that once stopping the steroids I would experience high blood pressure. My blood pressure did get high for me for the first 18 months or so...120- 130/70- 80. My heart rate was elevated in the 80's and 90's at rest. But the last few months of exercising and what not I have noticed a steady decline in blood pressure and heart rate (I get it checked every 2 weeks or so at the grocery store). Well yesterday my BP was 104/66 and my heart rate was 71. I did not sit down for 5 minutes first like they recommend. I was flying around the store and just sat down and hit start. So I am very happy with this as it shows I am responding very well to the exercise! And considering I am over 40 and on no prescription meds nor taking anything to lower my blood pressure, I'd say that's pretty darn good!
One last thing: Just want to say thank you all for reading and supporting me! I was not sure blogging about my journey was the right thing to do, but even this far into TSW, I am still receiving comments and personal emails that make me realize all this blogging is worth it! Just recently I received this comment and it brought tears to my eyes: "Thank you so much for your blog. I recently heard about topical steroid withdrawal. I have not had any steroid medication in about 6 months but still suffering. Your pictures were like looking in the mirror...you give me hope! ..thank you!"
My face and neck in a state of pinkness and irritation but feels fine.
Left arm pretty decent - but like my face and neck still pink here and there. But feels really good.
Right arm same as left - looks worse than it really is.
Legs still doing very well. Don't mind the hair - haven't had time to shave or get waxed!
Close up of foot and ankle....nothing going on here!
Left hand doing well...just a few small sores/spots but they don't bother me at all. Just noticed now I have slight elephant skin on my forearm/wrist area.
Right hand is where I have those 2 affected fingers. But they are looking and feeling better each day!
Merry Christmas!!!!
Monday, December 1, 2014
Bad Blogger!
So I declare I get the bad blogger of the last 6 months award! It's actually a very positive thing - I simply just have been doing so much that I have not had the time to sit down at the computer, download pictures and write. And I'm only working part-time! I misplaced that camera again and I've been going going going since my last post! I have been feeling a bit tired the last few days - the most tired I've felt since I did the cleanse a month ago. I will be doing my gallbladder flush this Thursday and not starting my internal cleanse until after the new year. I simply just have a lot to do! My house is finally in order (except for a few things that I will tackle next year but they are minor organizational things). I am starting to exercise again and I am nearly ready for Christmas. We spent this past weekend making a Thanksgiving dinner (BEST EVER) and putting up the tree. It was a very wonderful weekend and not marred by TSW in the least bit! My skin is still great - with a few small spots here and there along with those pesky daily hives. I just don't think about it too much - except for having to bandage 2 fingers for work and having the occasional itch attack with the hives, my skin is not really an issue anymore in my life. My focus lately has been my overall health and energy levels and of course getting my life in order after neglecting everything for over a year. I still feel like I am dealing with internal issues like with my liver, gallbladder, and adrenals. I will be getting my liver enzymes checked again in a few months once I'm done with all cleanses. I am still having a problem losing the extra weight so I'll also ask to have my thyroid checked as well.
But anyway, just wanted to stop and check in to let you all know I am still alive and very well! I pray you all find relief and peace soon within your own TSW journey!
But anyway, just wanted to stop and check in to let you all know I am still alive and very well! I pray you all find relief and peace soon within your own TSW journey!
Saturday, November 8, 2014
Almost 21 months and no big move...yet
Next week I will be 21 months into TSW. WOW, has the time flown! I am both amazed and saddened by this. Happy that the worst is behind me and the time went by rather quickly, but saddened because I feel like I missed a whole 2 years with my kids. Granted this past year has been so much better than the first 8 months without doubt. But the 2 big hand flares kept me from taking them places that I normally would because I had such limited use of my hands for about 6 months out of the year. The other 6 months I was working full time to make up for lost wages and catch up on the bills. But now I feel like I can get back on that Mom wagon....taking the kids places, taking lots of pictures, and making awesome memories!
As for the move - not happening for so many reasons. But the biggest reason is we could not find a decent place to rent that would accept German Shepherds. The places that did had some weird landlords. So we are back to square one....our original plan which is to save enough money to buy a manufactured home and to save for putting it on our land. We have a lot of things that need to be done in order to get a house on the land....like cutting down trees and making a semi-decent road/driveway. All of this costs lots of money. So back to working! So far I have been back to work for a month part-time....about 24 hours a week. I will pick that up to 36 hours a week after the holidays.
And the reason for only working here and there is not because I don't want to work the holidays...but for the big cleansing program I am doing that I talked about before. I am on day 3/5 of an herbal colon cleanse with a liquid fast. This will be followed by a 24 day internal cleansing with a strict diet. The 24 day cleanse uses multiple different herbs that target specific organs of the body in a specific order. This is the one I cannot wait to do! I did it once years ago and while I had mixed results, the good results were truly remarkable. The one thing I clearly remember is coughing up loads of thick green plaque from my lungs....this stuff looked like it was caked to the insides of my bronchial tubes for years and years. Never smoked and never lived in a smoker's home. Had asthma as a teenager. So I can't wait to see what happens this time. Especially since the last time I did not do the colon cleanse first nor did I change my diet.
Currently my skin is a mess! The last 3 days of the liquids only fast cleanse has seen me flare like nothing I've seen this past year. I am not as bad as those first 8 months of hell, but I'm somewhere in between. I am still sleeping and functioning here and there. My skin keeps flaring at different times with no rhyme or reason. My face and neck keep flaring about 3 times a day with intense itching episodes. It even woke me up at 4:30 this morning....raking the skin off my neck! The insides of my arms from my elbow to my wrist have flared about once a day, and I get a bunch of tiny itchy bumps on various areas of my legs every evening. All very weird but nothing I'm concerned about. Is it uncomfortable?? Oh yeah! My skin is just sensitive and excoriated. I haven't oozed which is great and have not had any pain except some here and there on my neck (always was my worst area). Just tons of itching and open skin. I did finally find my camera last week so I will try to take some pics in the next few days. I have just been more exhausted today than the other 2 days. I had about 2 hours this morning where I was out of it and felt very toxic. That passed and I feel much better. However if I do get up to do anything I do get tired very easily. Trying to take it easy as I need to give my body the rest it needs to heal during this cleanse.
I am really hoping these cleanses put me into a positive spiral towards excellent health. I really like the way I felt on the ketogenic diet, but I feel it is only good for short term purposes. We will be doing the Maker's Diet starting next week and then I will stick to the Weston A Price dietary guidelines. I have the Nourishing Traditions cookbook which I LOVE! I have been teaching my children to cook and bake over the last year and have really sped up their training in the kitchen recently. If I plan to work full time again in January I really need their help in getting food prepared and cooked on a regular basis.
That's it for now...I will return in a few days with pictures and an update on how this cleanse went.
As for the move - not happening for so many reasons. But the biggest reason is we could not find a decent place to rent that would accept German Shepherds. The places that did had some weird landlords. So we are back to square one....our original plan which is to save enough money to buy a manufactured home and to save for putting it on our land. We have a lot of things that need to be done in order to get a house on the land....like cutting down trees and making a semi-decent road/driveway. All of this costs lots of money. So back to working! So far I have been back to work for a month part-time....about 24 hours a week. I will pick that up to 36 hours a week after the holidays.
And the reason for only working here and there is not because I don't want to work the holidays...but for the big cleansing program I am doing that I talked about before. I am on day 3/5 of an herbal colon cleanse with a liquid fast. This will be followed by a 24 day internal cleansing with a strict diet. The 24 day cleanse uses multiple different herbs that target specific organs of the body in a specific order. This is the one I cannot wait to do! I did it once years ago and while I had mixed results, the good results were truly remarkable. The one thing I clearly remember is coughing up loads of thick green plaque from my lungs....this stuff looked like it was caked to the insides of my bronchial tubes for years and years. Never smoked and never lived in a smoker's home. Had asthma as a teenager. So I can't wait to see what happens this time. Especially since the last time I did not do the colon cleanse first nor did I change my diet.
Currently my skin is a mess! The last 3 days of the liquids only fast cleanse has seen me flare like nothing I've seen this past year. I am not as bad as those first 8 months of hell, but I'm somewhere in between. I am still sleeping and functioning here and there. My skin keeps flaring at different times with no rhyme or reason. My face and neck keep flaring about 3 times a day with intense itching episodes. It even woke me up at 4:30 this morning....raking the skin off my neck! The insides of my arms from my elbow to my wrist have flared about once a day, and I get a bunch of tiny itchy bumps on various areas of my legs every evening. All very weird but nothing I'm concerned about. Is it uncomfortable?? Oh yeah! My skin is just sensitive and excoriated. I haven't oozed which is great and have not had any pain except some here and there on my neck (always was my worst area). Just tons of itching and open skin. I did finally find my camera last week so I will try to take some pics in the next few days. I have just been more exhausted today than the other 2 days. I had about 2 hours this morning where I was out of it and felt very toxic. That passed and I feel much better. However if I do get up to do anything I do get tired very easily. Trying to take it easy as I need to give my body the rest it needs to heal during this cleanse.
I am really hoping these cleanses put me into a positive spiral towards excellent health. I really like the way I felt on the ketogenic diet, but I feel it is only good for short term purposes. We will be doing the Maker's Diet starting next week and then I will stick to the Weston A Price dietary guidelines. I have the Nourishing Traditions cookbook which I LOVE! I have been teaching my children to cook and bake over the last year and have really sped up their training in the kitchen recently. If I plan to work full time again in January I really need their help in getting food prepared and cooked on a regular basis.
That's it for now...I will return in a few days with pictures and an update on how this cleanse went.
Monday, September 22, 2014
LOVE my ongoing improvement AND the BIG move!!!
Today marks 2 weeks that I started the ketogenic diet. I thought I was on it a few days longer, but I looked back at the calendar and my blog and realized that I started this on a Monday exactly 2 weeks ago. Anyway...big improvements! I have to say I was not expecting to see or feel any improvements for at least a month. But here is a run-down:
1. Weight loss (6 lbs in 2 weeks). I started gaining weight 8 months into TSW...when my skin got better and I returned to work. A few reasons for this was not eating well and my liver getting worse. When my liver was bad years ago, I had gained a lot of weight. This year I gained about 30 lbs. Craziness! So I was hoping this diet would help heal my liver and help me lose weight. Not going to get my liver enzymes checked for another few months, but the weight loss is a positive sign!
2. Skin texture has drastically improved! I am still dealing with dry skin on my face, neck, and chest, and my fingers are still slowly healing, but the rest of my skin texture is way super soft! Could be from all the extra water I'm drinking! I posted a camera picture on FB the other day of my super smooth elbow! In my entire life, I have never had smooth elbows...they've always had dry skin! I have only had one small TSW flare on one elbow this year (lasted 2 or 3 days) but they continued to have that dry white skin. Not anymore! I can run my hands up and down my elbows and it's all baby soft skin! So weird!
3. ENERGY!!! Yes the one thing I was hoping to improve on this diet is definitely improving and much more than I had hoped for only 2 weeks in! I no longer take naps during the day and even when I feel tired, I am still able to get things done. And to top it off, that time of the month arrived the other day and it did not stop me in my tracks like it has every month for years! Am I bouncing all over the place? No...I have a LONG ways to go to heal my gut and adrenals. But this level of energy is what I had when my skin started to clear and I went back to work a year ago. I know I went back to work too soon, but at the time I didn't have a choice due to hubby's accident.
4. Better sleep patterns! I have had no problem getting enough sleep throughout TSW. I medicated myself with benadryl, motrin, and tylenol as needed during the brutal months and then only benadryl this past year. I want to come off the benadryl but I was not even getting tired before 3 am (even if I forced myself to not nap). This was a sign of severe adrenal stress in the book I read. I now get tired by midnight....and if it wasn't for the surface dry skin causing itching at night, I wouldn't need the benadryl to fall asleep as I am REALLY tired now before going to bed. I also stopped getting tired at 3 pm every day....another sign of unbalanced adrenals. I used to literally plan my errands around the 3-5 pm window during which I would almost always pass out on the couch completely exhausted. I may feel run down at that time this past week, but I no longer feel tired enough to fall asleep or even have to rest.
5. Better moods...this has more to do with my PMS than anything. I was shocked when I got my period the other day because I had no PMS mood swings. That is amazing in and of itself! :)
All good in the skin department - no major flares - still dealing with super dry skin on my face and it is more reddish in color. But no significant itching, no oozing, no burning. My neck and chest the same except no redness at all. Fingers get itchy about every 2 days and then any scratching will cause them to swell a bit - but nothing that inhibits bending at the joints like during a flare. The skin on 8 of my fingers is super dry like my face. Plus the open areas from my flare are still healing. I will scratch a few scabs open from time to time and that just makes them take longer to heal. Oh well. I'm just glad they don't ooze nor cause any pain. Still cooking and getting things done without having to stop because of nerve pain in my fingers. The rest of my skin is clear...legs, feet, back, arms.
As for the big move....we don't have a closing date yet, but we should have one soon! Looking to be in Kentucky in about a month! So very excited!! This will begin a whole new chapter for us and I can't wait!
1. Weight loss (6 lbs in 2 weeks). I started gaining weight 8 months into TSW...when my skin got better and I returned to work. A few reasons for this was not eating well and my liver getting worse. When my liver was bad years ago, I had gained a lot of weight. This year I gained about 30 lbs. Craziness! So I was hoping this diet would help heal my liver and help me lose weight. Not going to get my liver enzymes checked for another few months, but the weight loss is a positive sign!
2. Skin texture has drastically improved! I am still dealing with dry skin on my face, neck, and chest, and my fingers are still slowly healing, but the rest of my skin texture is way super soft! Could be from all the extra water I'm drinking! I posted a camera picture on FB the other day of my super smooth elbow! In my entire life, I have never had smooth elbows...they've always had dry skin! I have only had one small TSW flare on one elbow this year (lasted 2 or 3 days) but they continued to have that dry white skin. Not anymore! I can run my hands up and down my elbows and it's all baby soft skin! So weird!
3. ENERGY!!! Yes the one thing I was hoping to improve on this diet is definitely improving and much more than I had hoped for only 2 weeks in! I no longer take naps during the day and even when I feel tired, I am still able to get things done. And to top it off, that time of the month arrived the other day and it did not stop me in my tracks like it has every month for years! Am I bouncing all over the place? No...I have a LONG ways to go to heal my gut and adrenals. But this level of energy is what I had when my skin started to clear and I went back to work a year ago. I know I went back to work too soon, but at the time I didn't have a choice due to hubby's accident.
4. Better sleep patterns! I have had no problem getting enough sleep throughout TSW. I medicated myself with benadryl, motrin, and tylenol as needed during the brutal months and then only benadryl this past year. I want to come off the benadryl but I was not even getting tired before 3 am (even if I forced myself to not nap). This was a sign of severe adrenal stress in the book I read. I now get tired by midnight....and if it wasn't for the surface dry skin causing itching at night, I wouldn't need the benadryl to fall asleep as I am REALLY tired now before going to bed. I also stopped getting tired at 3 pm every day....another sign of unbalanced adrenals. I used to literally plan my errands around the 3-5 pm window during which I would almost always pass out on the couch completely exhausted. I may feel run down at that time this past week, but I no longer feel tired enough to fall asleep or even have to rest.
5. Better moods...this has more to do with my PMS than anything. I was shocked when I got my period the other day because I had no PMS mood swings. That is amazing in and of itself! :)
All good in the skin department - no major flares - still dealing with super dry skin on my face and it is more reddish in color. But no significant itching, no oozing, no burning. My neck and chest the same except no redness at all. Fingers get itchy about every 2 days and then any scratching will cause them to swell a bit - but nothing that inhibits bending at the joints like during a flare. The skin on 8 of my fingers is super dry like my face. Plus the open areas from my flare are still healing. I will scratch a few scabs open from time to time and that just makes them take longer to heal. Oh well. I'm just glad they don't ooze nor cause any pain. Still cooking and getting things done without having to stop because of nerve pain in my fingers. The rest of my skin is clear...legs, feet, back, arms.
As for the big move....we don't have a closing date yet, but we should have one soon! Looking to be in Kentucky in about a month! So very excited!! This will begin a whole new chapter for us and I can't wait!
Thursday, September 11, 2014
The adrenals, Ketogenic diet and almost 19 months!
So much to talk about today!! In 3 days I will be 19 months into TSW. WOW! I am so thankful for the worst behind me! I would post pictures but have no idea where my camera is - when we went to KY a month ago to buy our house, I couldn't find it then either and had to use my phone camera. When we got home I found it. Now it's lost again. Life is a bit chaotic with buying a house out of state and attempting to clean house and pack! I do have pictures in the FB groups though. Mostly of my hands as that is where my current flare persists.
At this moment my fingers continue to slowly heal from the flare. They started to improve last week and then healing seemed to stop - nothing got worse but they just kind of stayed the same. The good news is that while they don't look better, they feel better - I am back to cooking and even doing the dishes here and there. I can pet the dogs again and even open up my water bottles. During the this week when my hands stopped in their healing tracks, I started a new flare on my face and neck - this was worse than any flare I've had in the last 10 months. Nothing horrible - no oozing, moderate itching, and slight to moderate burning. No swelling and the only redness is where I scratched. But my mini-flares have been much more isolated and smaller in nature than this flare. So far I am in day 3 of this flare and already it is improving.
I have a theory (yes I often have them) - you see 3 days ago I read an AMAZING book (we'll get to that in a bit). I plunged head first into a ketogenic diet (not following paleo or any other specific diet - just a diet with high fat, moderate protein, and low carb). And lo and behold within 8 hours I started this flare. Now I have had multiple mini flares on either my face or neck on and off over the last month or so - but this was very different. My face turned into sandpaper it was so dry - and yes I was drinking tons of water - over 2 liters per day. But the facial dryness was nothing I had experienced during TSW to this extent. It wasn't causing dry cracks like on the side of the mouth or eyelid which is what I would have expected. It was weird is all I can say. The dryness seemed to peak today and then this evening it is seemingly going away. I'll be able to tell more tomorrow. But my theory is that the ketogenic diet put me into a die-off state (of candida) and a detox of toxins, which caused a bad skin reaction. This seems to happen to me every time I get strict with my diet. But I've never attempted a ketogenic diet before.
Anyway - why did I do this? Isn't this supposed to be unhealthy? Well you see I have been battling this fatigue on and off for years - became worse during TSW, improved late last year enough for me to return to work, and then became much worse again a few months ago. I also had blood work done and it was discovered my liver enzymes were high again. I was perplexed and very frustrated. But didn't have time to look into it much. I figured it was my adrenals taking their sweet old time healing. Then 4 days ago I was going through my blog feed and one of my favorite blogs had information on a new book called "Rethinking Fatigue" by Nora Gedgaudas. And can we say light bulb moment!! Wow!! I never read something so fast and processed so much information all in one day! Within the first hour of reading it I had already started the ketogenic diet based on the information in her book. But since it was afternoon and all, I didn't count that day as day 1. Anyway the information was enough for me to realize I need to seriously overhaul my gut which in turn will correct my adrenals and liver. And on day 3 today I am feeling so much better (those first 2 days were not so pleasant yucky feeling). Let's just say I see the bigger picture in ALL of this!
OK, last but definitely not least - I want to give a big shout out to an amazing blogger and holistic nutritionist, Abby! Her website, Prime Physique Nutrition is dedicated to healing eczema from a nutritional standpoint. She is truly amazing and her blog is full of great information beneficial to all of us even in TSW. Eventually down the road many of us will still need to address the underlying cause of the eczema in the first place. And her blog is the place to be! She was very kind and asked me to be a guest blogger and write about TSW. I was happy to do so in hopes of reaching more and more people with this condition.
That's it for now. Pictures to come as soon as I find my camera. I need to get these boxes more organized I think! :)
At this moment my fingers continue to slowly heal from the flare. They started to improve last week and then healing seemed to stop - nothing got worse but they just kind of stayed the same. The good news is that while they don't look better, they feel better - I am back to cooking and even doing the dishes here and there. I can pet the dogs again and even open up my water bottles. During the this week when my hands stopped in their healing tracks, I started a new flare on my face and neck - this was worse than any flare I've had in the last 10 months. Nothing horrible - no oozing, moderate itching, and slight to moderate burning. No swelling and the only redness is where I scratched. But my mini-flares have been much more isolated and smaller in nature than this flare. So far I am in day 3 of this flare and already it is improving.
I have a theory (yes I often have them) - you see 3 days ago I read an AMAZING book (we'll get to that in a bit). I plunged head first into a ketogenic diet (not following paleo or any other specific diet - just a diet with high fat, moderate protein, and low carb). And lo and behold within 8 hours I started this flare. Now I have had multiple mini flares on either my face or neck on and off over the last month or so - but this was very different. My face turned into sandpaper it was so dry - and yes I was drinking tons of water - over 2 liters per day. But the facial dryness was nothing I had experienced during TSW to this extent. It wasn't causing dry cracks like on the side of the mouth or eyelid which is what I would have expected. It was weird is all I can say. The dryness seemed to peak today and then this evening it is seemingly going away. I'll be able to tell more tomorrow. But my theory is that the ketogenic diet put me into a die-off state (of candida) and a detox of toxins, which caused a bad skin reaction. This seems to happen to me every time I get strict with my diet. But I've never attempted a ketogenic diet before.
Anyway - why did I do this? Isn't this supposed to be unhealthy? Well you see I have been battling this fatigue on and off for years - became worse during TSW, improved late last year enough for me to return to work, and then became much worse again a few months ago. I also had blood work done and it was discovered my liver enzymes were high again. I was perplexed and very frustrated. But didn't have time to look into it much. I figured it was my adrenals taking their sweet old time healing. Then 4 days ago I was going through my blog feed and one of my favorite blogs had information on a new book called "Rethinking Fatigue" by Nora Gedgaudas. And can we say light bulb moment!! Wow!! I never read something so fast and processed so much information all in one day! Within the first hour of reading it I had already started the ketogenic diet based on the information in her book. But since it was afternoon and all, I didn't count that day as day 1. Anyway the information was enough for me to realize I need to seriously overhaul my gut which in turn will correct my adrenals and liver. And on day 3 today I am feeling so much better (those first 2 days were not so pleasant yucky feeling). Let's just say I see the bigger picture in ALL of this!
OK, last but definitely not least - I want to give a big shout out to an amazing blogger and holistic nutritionist, Abby! Her website, Prime Physique Nutrition is dedicated to healing eczema from a nutritional standpoint. She is truly amazing and her blog is full of great information beneficial to all of us even in TSW. Eventually down the road many of us will still need to address the underlying cause of the eczema in the first place. And her blog is the place to be! She was very kind and asked me to be a guest blogger and write about TSW. I was happy to do so in hopes of reaching more and more people with this condition.
That's it for now. Pictures to come as soon as I find my camera. I need to get these boxes more organized I think! :)
Sunday, August 31, 2014
My plan to complete healing...
I feel stuck...stuck in this cycle of mini-flares (small areas that itch, break open, scab over, and then eventually heal). I have little to no oozing. My fingers are still a mess but the swelling is gone as is the oozing. They are just dry and cracked with blister-like open skin trying to heal. I pretty much have my life back except for not being able to work due to the finger flare. Over the last few months I noticed something - I am unable to live with this pretty decent skin without my MSM powder and glutathione. 3 times in the last 2 months I went more than 4 days without any of my supplements. 2 were for traveling and then this past week I did it due to my monthly and also to see if my assumptions were correct - that I'm not as close to healing as I thought I was a few months ago. I have a much larger flare within 48 hours of stopping my supplements - notably the 2 mentioned above. I stopped 4 days ago and since yesterday my itching has increased dramatically as well as my skin burning and breaking open in many areas - my chest, stomach, left elbow, forearms, neck, and face. The other 2 flares were mostly face and neck and arms. This was bigger but I am also lacking in sleep due to stopping my benadryl as well.
I am DONE! Done with it all - all pharmaceuticals!!!! I will use nothing but herbs from now on except for the MSM powder and glutathione - I will stop those once fully healed. I am stopping my vitamins and supplements that are not pure herbs. I am tired of putting things into my body that are not all natural. Manufactured vitamin D and all those vitamins are manufactured and produced with chemicals. I am on a mission to heal with food and herbs. I am on a mission to fight the last of this TSW as naturally as possible! No more tanning beds either! No more sleep aids! I have been dependent on Benadryl for years to get to sleep due to the chronic itch. Well since my itching has been at its all time low I figured I would stop the Benadryl. Now studies show that Benadryl is not addictive. And that one stopping Benadryl does not suffer from withdrawal...I beg to differ! I have tapered down from 50 mg a night to 25 mg every other night over the last few weeks. Then 6 days or so ago I went cold turkey and let me just say it has not been fun! My brain is wired until at least 4 am every night. I am very anxious, and my restless legs have returned. I also experienced bad headaches for 3 days. Studies show that long term use of Benadryl can cause lowering of the blood pressure - so I assume stopping it causes high blood pressure temporarily (rebound effect) which would explain my headaches. But this Benadryl experience really kicked off my mission here. FDA approved or not, I will just not be using it.
Herbs on the other hand are God's medicine to us. So starting tonight I will start back up on my herbal teas. I had stopped drinking them out of laziness. And I will start the cleansing program I had talked about before - a colon cleanse followed by an all body herbal cleanse. I have used these products in the past and they were amazing - unfortunately at that time I was still using steroid creams. So their effectiveness was hampered I believe.
But there is a catch - a pause if you will. In the next 30-45 days we will more than likely be moving. It is our dream to move to KY where we bought nearly 70 acres about 3-4 years ago. We want to start our own farm. Well building on the and proved difficult given the remoteness of the property and the upfront cost of building. So a few weeks back I went on another road trip and looked at a few homes - one of them being only 11 miles away from our property. My husband has dreams of building a home on our land someday and living so close by is as close to our dream as we can get right now. It's a nice house in the country with beautiful views. We are now just waiting for the final word on financing. We will know this coming week. If all goes well we will move soon given there are no contingencies. Anyway - with moving so soon, it is not wise to be starting a cleanse, nor is it reasonable to expect myself to stay on a 100% clean diet while packing and moving. So I will institute some of the following of my plan now and the rest after we are moved.
So here goes:
1. Stop all supplements and vitamins and over the counter medications. Exceptions include MSM powder and glutathione which my body seems to really need to keep the skin from flaring, swelling, and oozing.
2. Start a good all natural diet - following the Weston A Price Foundation dietary guidelines (most recipes come from "Nourishing Traditions" by Sally Fallon - my go to cookbook. No processed foods, no refined sugars or flour, no eating out, etc, etc. All food to be organic and not tainted with chemicals, antibiotics, hormones, etc, etc.
3. Get back to juicing - something I have done in the past and really noticed a difference in my overall energy and health. The problem was always time - I found it hard to do all that cutting and chopping each day plus the extra runs to the grocery store each week for fresh produce. New mission: Shop once every other week at farmer's markets or where there is a supply of fresh organic produce. Buy what I need for 2 weeks worth of juicing. Spend half a day cutting and chopping it all! Then place individual portions good for one juicing into a freezer container and place in freezer - take one out each day and place in fridge for the following day's juice. Problem solved.
4. Start my colon and body cleanses - the colon cleanse is 9 days and the all body one is 2 weeks I think. I buy these cleanses from Blessed Herbs - a family owned business. Their products are excellent and they get awesome reviews. These are strong cleanses. The all body one cleanses each of your organs. When I did this 8 years ago I remember taking the lung remedies thinking I wouldn't notice any reactions given I never smoked and only had asthma as a teenager. Well I remember hacking up gobs of really nasty stuff that was obviously caked to the walls of my bronchial tubes. This cleanse is very potent and works very well. But I knew my body could not handle something like that until it was mostly out of TSW. And I believe now is my time (after I move of course).
5. GET OUTSIDE MORE!!! And soak up the sun naturally! I also plan to get myself a clothesline and start hanging my clothes outside to dry in the sun. I LOVE outdoor fresh smelling laundry!!
6. Change to all homemade beauty products and cleaning products. Basically trying to live as chemically free as possible! I just received my natural living books in the mail this last week!!
7. Exercise more!! This will come with time - building up my endurance. But I have 2 dogs that need more exercise - their exercise is limited to the yard given we live on a 55 mph road and there are no side roads near by. Our hopefully soon to be new home is located on a dead end road that is long but only has 4 other homes on it. Lots of exercise to be had there for sure!
And that's about it for now. I truly think that once I start all this my skin will turn it's final bend into healing completely. I have been straying too far off our clean eating due to my finger flare. It keeps me from cooking and doing most things. But now that it seems to be on the tail end, I can start to do the things I know I should. I am not immune to stress flares so I know moving will cause me to flare as well - I'm just hoping that no matter what, it doesn't affect my hands. I need my hands back!! My frustration at not being able to do even simple tasks like open a bottle or pet my dogs has driven me to the brink of madness lately. I have all this energy and so much I need to do - yet I'm stuck doing nothing because of this finger flare!
About healing - no one knows for sure is the common motto. I understand this completely as I still do not understand this TSW fully. I have healed dramatically since starting treatment for my MTHFR gene mutation, of which I am grateful for. However I was doing so well I really thought I was going to be healed by 18 months. But here I am at 18 months and still having these flares. They are not horrible by any means and the pain has only returned when having the hand flare and now the finger flare. All other mini-flares on my body have had no pain. This recent flare I am in from stopping my supplements however has caused some burning here and there. But I know turning away from the chemicals in my life and processed foods is the answer for me. I realize not everyone agrees. But given what I know about my gene mutation, I feel I am slowing my healing down by keeping all these chemicals in my life. And we live in a very toxic world. The more toxins we can reduce the better we will be for it. So my new goal for final healing will be my 2 year TSW anniversary - next Valentine's Day. It's just for my own personal need - a need to finalize this horrible dreadful process. If I am wrong like I was last time, so be it. I am OK with saying I was wrong. As long as I never go back to what I was like the first 8 months of pure hell, then in all honesty I don't care if this drags on even longer than 2 years. I'm no longer living in hell nor am I house - bound. So it really doesn't matter. However I like to set goals - and this is a good goal to try to achieve! :)
As for my skin at this very moment - so much better than 4 hours ago!!! I took my MSM powder just before writing this and already most of my itch is gone and there is no more burning anywhere. Gotta love those methyl groups!! :)
I am DONE! Done with it all - all pharmaceuticals!!!! I will use nothing but herbs from now on except for the MSM powder and glutathione - I will stop those once fully healed. I am stopping my vitamins and supplements that are not pure herbs. I am tired of putting things into my body that are not all natural. Manufactured vitamin D and all those vitamins are manufactured and produced with chemicals. I am on a mission to heal with food and herbs. I am on a mission to fight the last of this TSW as naturally as possible! No more tanning beds either! No more sleep aids! I have been dependent on Benadryl for years to get to sleep due to the chronic itch. Well since my itching has been at its all time low I figured I would stop the Benadryl. Now studies show that Benadryl is not addictive. And that one stopping Benadryl does not suffer from withdrawal...I beg to differ! I have tapered down from 50 mg a night to 25 mg every other night over the last few weeks. Then 6 days or so ago I went cold turkey and let me just say it has not been fun! My brain is wired until at least 4 am every night. I am very anxious, and my restless legs have returned. I also experienced bad headaches for 3 days. Studies show that long term use of Benadryl can cause lowering of the blood pressure - so I assume stopping it causes high blood pressure temporarily (rebound effect) which would explain my headaches. But this Benadryl experience really kicked off my mission here. FDA approved or not, I will just not be using it.
Herbs on the other hand are God's medicine to us. So starting tonight I will start back up on my herbal teas. I had stopped drinking them out of laziness. And I will start the cleansing program I had talked about before - a colon cleanse followed by an all body herbal cleanse. I have used these products in the past and they were amazing - unfortunately at that time I was still using steroid creams. So their effectiveness was hampered I believe.
But there is a catch - a pause if you will. In the next 30-45 days we will more than likely be moving. It is our dream to move to KY where we bought nearly 70 acres about 3-4 years ago. We want to start our own farm. Well building on the and proved difficult given the remoteness of the property and the upfront cost of building. So a few weeks back I went on another road trip and looked at a few homes - one of them being only 11 miles away from our property. My husband has dreams of building a home on our land someday and living so close by is as close to our dream as we can get right now. It's a nice house in the country with beautiful views. We are now just waiting for the final word on financing. We will know this coming week. If all goes well we will move soon given there are no contingencies. Anyway - with moving so soon, it is not wise to be starting a cleanse, nor is it reasonable to expect myself to stay on a 100% clean diet while packing and moving. So I will institute some of the following of my plan now and the rest after we are moved.
So here goes:
1. Stop all supplements and vitamins and over the counter medications. Exceptions include MSM powder and glutathione which my body seems to really need to keep the skin from flaring, swelling, and oozing.
2. Start a good all natural diet - following the Weston A Price Foundation dietary guidelines (most recipes come from "Nourishing Traditions" by Sally Fallon - my go to cookbook. No processed foods, no refined sugars or flour, no eating out, etc, etc. All food to be organic and not tainted with chemicals, antibiotics, hormones, etc, etc.
3. Get back to juicing - something I have done in the past and really noticed a difference in my overall energy and health. The problem was always time - I found it hard to do all that cutting and chopping each day plus the extra runs to the grocery store each week for fresh produce. New mission: Shop once every other week at farmer's markets or where there is a supply of fresh organic produce. Buy what I need for 2 weeks worth of juicing. Spend half a day cutting and chopping it all! Then place individual portions good for one juicing into a freezer container and place in freezer - take one out each day and place in fridge for the following day's juice. Problem solved.
4. Start my colon and body cleanses - the colon cleanse is 9 days and the all body one is 2 weeks I think. I buy these cleanses from Blessed Herbs - a family owned business. Their products are excellent and they get awesome reviews. These are strong cleanses. The all body one cleanses each of your organs. When I did this 8 years ago I remember taking the lung remedies thinking I wouldn't notice any reactions given I never smoked and only had asthma as a teenager. Well I remember hacking up gobs of really nasty stuff that was obviously caked to the walls of my bronchial tubes. This cleanse is very potent and works very well. But I knew my body could not handle something like that until it was mostly out of TSW. And I believe now is my time (after I move of course).
5. GET OUTSIDE MORE!!! And soak up the sun naturally! I also plan to get myself a clothesline and start hanging my clothes outside to dry in the sun. I LOVE outdoor fresh smelling laundry!!
6. Change to all homemade beauty products and cleaning products. Basically trying to live as chemically free as possible! I just received my natural living books in the mail this last week!!
7. Exercise more!! This will come with time - building up my endurance. But I have 2 dogs that need more exercise - their exercise is limited to the yard given we live on a 55 mph road and there are no side roads near by. Our hopefully soon to be new home is located on a dead end road that is long but only has 4 other homes on it. Lots of exercise to be had there for sure!
And that's about it for now. I truly think that once I start all this my skin will turn it's final bend into healing completely. I have been straying too far off our clean eating due to my finger flare. It keeps me from cooking and doing most things. But now that it seems to be on the tail end, I can start to do the things I know I should. I am not immune to stress flares so I know moving will cause me to flare as well - I'm just hoping that no matter what, it doesn't affect my hands. I need my hands back!! My frustration at not being able to do even simple tasks like open a bottle or pet my dogs has driven me to the brink of madness lately. I have all this energy and so much I need to do - yet I'm stuck doing nothing because of this finger flare!
About healing - no one knows for sure is the common motto. I understand this completely as I still do not understand this TSW fully. I have healed dramatically since starting treatment for my MTHFR gene mutation, of which I am grateful for. However I was doing so well I really thought I was going to be healed by 18 months. But here I am at 18 months and still having these flares. They are not horrible by any means and the pain has only returned when having the hand flare and now the finger flare. All other mini-flares on my body have had no pain. This recent flare I am in from stopping my supplements however has caused some burning here and there. But I know turning away from the chemicals in my life and processed foods is the answer for me. I realize not everyone agrees. But given what I know about my gene mutation, I feel I am slowing my healing down by keeping all these chemicals in my life. And we live in a very toxic world. The more toxins we can reduce the better we will be for it. So my new goal for final healing will be my 2 year TSW anniversary - next Valentine's Day. It's just for my own personal need - a need to finalize this horrible dreadful process. If I am wrong like I was last time, so be it. I am OK with saying I was wrong. As long as I never go back to what I was like the first 8 months of pure hell, then in all honesty I don't care if this drags on even longer than 2 years. I'm no longer living in hell nor am I house - bound. So it really doesn't matter. However I like to set goals - and this is a good goal to try to achieve! :)
As for my skin at this very moment - so much better than 4 hours ago!!! I took my MSM powder just before writing this and already most of my itch is gone and there is no more burning anywhere. Gotta love those methyl groups!! :)
Saturday, August 16, 2014
I have not disappeared! 18 Months off Steroids!!!
2 days ago marked my 18th month anniversary of TSW. Yesterday just happened to be my 42nd birthday. I found I was more excited about my TSW milestone than my birthday! And here's why - after 30 years of consistent topical steroid use, I was not expecting to be nearly all healed at 18 months. It was wishful thinking but after all the research and reading blogs I did at the beginning of my journey I figured I had a good 2 years ahead of me of the worst symptoms followed by 2 years of smaller but manageable flares. But I was blessed at 8 months into TSW of finding out about 2 critical elements that I now know have helped heal me much faster - moisturizer withdrawal and treatment of methylation gene mutations. Methylation is critical for healing - if one has one of the many gene mutations (like MTHFR of MTRR) then one's ability to heal will be poor at best. But my methylation issue did not just affect my skin - oh no. It went so far as to allow the topical steroids into my body and wreak more havoc - like liver and adrenal gland damage - which I am still recovering from.
So where do I stand today? Well, skin wise I am very good. Dry skin patches on forearms and face and flaring on my fingers. That;s it. For the last 3 months I have had a few bigger flares - most of them lasted about a week and included multiple areas like my neck and chest, forearms and ankles, etc. However these bigger flares were followed by tons of peeling and super incredible soft skin since. Then my fingers flared - in all the areas where they didn't flare with my last hand flare. My hands thankfully are all clear. But my fingers have been flaring for the last month non-stop. Lots of swelling and ooze. I have not oozed like this since the beginning 8 months. In fact the ooze has been significantly different - first there is no metallic ooze smell. Which is weird given the copious amounts that dripped off my fingers the first few weeks. And then there is the texture of it - it was very thick and super sticky - to the point of being tacky. I thought a few times I could probably use it as glue! The last few weeks it has been drying out more and more to the point I have not oozed in about 5 to 6 days. So I think I am at the end of this flare. I figured the hand and finger flares were as bad as they were because I used large amounts of topical steroid creams on them throughout the years - especially when I became a nurse 17 years ago. I had to keep them as damage free as possible to avoid getting infections.
Other parts of my body like my chest, neck, legs, stomach, back, and feet are all super clear. I am at the point where I no longer go tanning twice a week. I have only gone about 4 or 5 times the last 2 months. I cancelled my monthly membership and will only go again if I happen to flare again on a larger scale. I use nothing on my skin at all. However I am looking into making my own essential oil balms or creams at some point to use once all my skin is healed.
The rest of me is still healing. I went to a doctor about a month ago and had basic lab work done. It shows my liver enzymes elevated - not through the roof, but not close to normal either. That means I still have a lot of healing to accomplish. I started going through adrenal fatigue again - it seemed to improve for awhile but now I find I crash at the low points of my adrenal cycles like 3 pm. I find I start scheduling my day around this crash. I have done a lot for my adrenals but I feel they will take a few years longer to heal all the way. In the meantime I am planning on doing some herbal cleanses - ones I have researched and find to be safe for my body to handle. While going through TSW, we are in a state of cleansing already - cleansing the toxins from our skin. I had wanted to do an all body cleanse but knew my body would not handle it well until my skin was in a better place. Any further cleansing we do will only irritate our skin as toxins are released through many areas including the skin. I think this is why the whole diet issue is so controversial in TSW - so many people say it does nothing to help. That's because when one starts a much healthier diet, cleansing to some extent occurs - hence the skin only gets worse or just doesn't get better. Long term diet changes will be highly beneficial and I believe will help with the overall process of TSW, however there doesn't appear to be any short term benefits because of the cleansing reactions. So people just throw it to the curb saying it never helped. Which is sad given healing requires certain proteins and nutrients - when we deprive our bodies of nutrient dense foods and eat a Standard American Diet full of sugar and chemicals, we are only inhibiting our ability to heal properly. So if you happened to change your diet for a more clean way of eating and see no improvement in a few months time, do not despair and just stick with it - you are what you eat! And you will heal either way - but personally I'd rather heal sooner rather than later.
So do I consider myself completely healed? No not yet but I am definitely out of the clutches of TSW. I am in the final healing phase. I sleep well, I can tolerate temperature extremes, I can tolerate sweating without any itching, and I can wear whatever I want. I am frustrated with my fingers but that's because I need my fingers to do just about everything! Gauging their progress over the last few weeks I say I have about another 2 weeks of them being irritated and into the final stages of healing over. I had some severe nerve pain with them the first 2-3 weeks but now they are pain free and no longer swollen. They just remain sensitive to touching things because the skin is still somewhat raw. I am looking forward to them healing over! At this very moment in time I would say my skin is 95-96% healed. Not too bad for 18 months with a long history!
Thursday, July 17, 2014
17 months update
3 days ago I hit my 17th month of TSW. Nothing new to report. Life is good. I still remain 90% or so clear. I have had no mini flares in the past week or so. But dealing with dry skin on arms and small patches on face and back. Then there are my fingers. When I returned to work last October, within a month my hands broke out severely. I chalked it up to the harsh soaps I have to use at work. I worked for about 3 months then had to stop working as my hands were only getting worse. I went back to work about 2 months ago with nearly all clear hands and fingers. Well now my fingers are all broken out. Good news is the back of my hands remain all clear. I wrap my fingers with waterproof tape each day I work. But they continue to get worse. So now I am at an impasse. I can't afford to quit work again yet I don't know if my fingers will clear up while working. I'm happy that it is only my fingers this time - and it took an additional month to start breaking open compared to last time. To me that means a lot of healing has taken place. I am contracted until October. I am praying I can make it 3 more months and then take a month break.
As for other things - my energy levels have remained mediocre...not bad but not steadily improving like I had initially seen when I switched brands of glutathione. My energy went up and then stopped. Thankfully I have not had a drop in energy. However I feel stagnant. Stagnant in energy levels and in healing. By no means am I complaining - it is a joy to be in this place. I have my life back. But now I really want to focus on getting well all around - not just my skin.
I had mentioned before something called TBA (total body analysis). It is an alternative health thing that many people see as bizarre or pseudoscience. We are all entitled to our opinions. For me as a nurse I see modern medicine as doing more harm than good these days. I disagree with a lot of common practices. And as someone who has been severely damaged health wise by modern medicine, I choose to seek alternatives. I tried acupuncture and found it to be so-so. I have tried all sorts of things. But I found TBA to be something reliable even though I do not understand completely how it works. I have been to a few independent TBA practitioners in the past and they were always spot on. But since I was on the steroids at the time I think my immune system had a hard time with the remedies even though I saw amazing improvements in my overall health. So this time I went to the top person - the doctor who discovered this himself. I sent in my information a few weeks ago and received a call from the office 2 or 3 days ago - he said he was not going to waste my money as when he started the scan he immediately saw that my immune system was severely out of whack and needed re-building before I could take any remedies. So he didn't complete the full scan - he said it would be a waste. He said I needed at least 2 months of re-building my immune system before he felt I should try again. I was both discouraged by this news and happy all at the same time. Here I thought with all the diet changes and supplements that my immune system was getting better. But it reminded me of just how severe the damage is internally from 30 years of steroids. I guess I was expecting too much at 17 months. But I was happy he was honest with me and didn't rip me off. He recommended pure wheat grass juice along with minerals daily for the next 2 months and then we will try again.
So now I wait for the wheat grass juice I ordered to come in and started up on echinacea and goldenseal. I'm already taking all sorts of vitamins. So I thought while I'm at it I will eat nothing but fruits and veggies for the next 4 weeks and give my body a rest from any heavy digestion. I'll see how it goes.
As for other news: I made it to the dentist for the first time in 9 years - yes NINE years. I had a horrible experience years ago when I had my wisdom teeth out - they knew they were impacted but though they could do it under local. Well 25+ shots later they finally drilled out all 4 of them. And not all the shots worked well so I ended up feeling more pain than I should have. I have a high tolerance for pain but that was pretty bad. So since then I went to the dentist less and less - each time I went my anxiety just got worse. And with having kids and traveling, well the dentist fell off my priority list for myself. 3 years ago I got a really bad toothache - had someone at work look at it and they said I had a big cavity in my molar. I researched alternatives ways to fix toothaches and found that cod liver oil can actually reverse cavities. I knew my cavity was probably too big at that point to fix naturally but I gave it a go. Within a few days my toothache went away and I carried on with life. Had no sensitivities in my mouth and pretty much forgot about it - but all along taking the cod liver oil (with butter oil) on a daily basis. Then a few weeks ago that back molar broke - had about 1/4 of it come out - now I really had a hole in my tooth! UGH! So I sucked it up and called the dentist (mind you I've always had dental insurance so that was never a factor - just my fear). Went in today and here is what they found:
NO CAVITIES!!! I had a ton of plaque and moderate gingivitis. In fact the hygienist asked when I had the molar next to the broken one filled. I said I never had a filling except once on a baby tooth but that came out as a kid. She insisted this molar either had a filling or a sealant. I said I had sealants put on as a kid - but they were the yearly fluoride ones - nothing permanent. She looked confused and said my tooth was like a rock and it felt like a porcelain filling. Nope. Then she looked at the broken tooth and said she saw no decay at all so I must have fractured my tooth somehow - nope - have had no facial trauma or injuries at all. All I can think is the cod liver oil and butter oil did what it claims to do - rebuilds the teeth. There is no other logical explanation. So that was the good news! The bad news is I had so much plaque that my cleaning had to be divided into 2 visits - so I have to return next week! UGH! But they are really good at this office - she was nice enough to use the extra strength topical lidocaine to numb my gums during the cleaning as they were pretty sensitive. Hoping I have the will to return next week. I know I will end up going as my kids will pretty much make me go. They were really bothered when my tooth broke - so much that they got into brushing their teeth multiple times a day instead of just before bed. Now they are making sure hubby and I are brushing our teeth as well. :)
Well off to bed here soon. Hope everyone is having a good skin day! If not, hang in there - there is a light at the end of that very dark tunnel! Trust me - I was there once and I never could imagine ever seeing the light again! But I did! And you will too!
As for other things - my energy levels have remained mediocre...not bad but not steadily improving like I had initially seen when I switched brands of glutathione. My energy went up and then stopped. Thankfully I have not had a drop in energy. However I feel stagnant. Stagnant in energy levels and in healing. By no means am I complaining - it is a joy to be in this place. I have my life back. But now I really want to focus on getting well all around - not just my skin.
I had mentioned before something called TBA (total body analysis). It is an alternative health thing that many people see as bizarre or pseudoscience. We are all entitled to our opinions. For me as a nurse I see modern medicine as doing more harm than good these days. I disagree with a lot of common practices. And as someone who has been severely damaged health wise by modern medicine, I choose to seek alternatives. I tried acupuncture and found it to be so-so. I have tried all sorts of things. But I found TBA to be something reliable even though I do not understand completely how it works. I have been to a few independent TBA practitioners in the past and they were always spot on. But since I was on the steroids at the time I think my immune system had a hard time with the remedies even though I saw amazing improvements in my overall health. So this time I went to the top person - the doctor who discovered this himself. I sent in my information a few weeks ago and received a call from the office 2 or 3 days ago - he said he was not going to waste my money as when he started the scan he immediately saw that my immune system was severely out of whack and needed re-building before I could take any remedies. So he didn't complete the full scan - he said it would be a waste. He said I needed at least 2 months of re-building my immune system before he felt I should try again. I was both discouraged by this news and happy all at the same time. Here I thought with all the diet changes and supplements that my immune system was getting better. But it reminded me of just how severe the damage is internally from 30 years of steroids. I guess I was expecting too much at 17 months. But I was happy he was honest with me and didn't rip me off. He recommended pure wheat grass juice along with minerals daily for the next 2 months and then we will try again.
So now I wait for the wheat grass juice I ordered to come in and started up on echinacea and goldenseal. I'm already taking all sorts of vitamins. So I thought while I'm at it I will eat nothing but fruits and veggies for the next 4 weeks and give my body a rest from any heavy digestion. I'll see how it goes.
As for other news: I made it to the dentist for the first time in 9 years - yes NINE years. I had a horrible experience years ago when I had my wisdom teeth out - they knew they were impacted but though they could do it under local. Well 25+ shots later they finally drilled out all 4 of them. And not all the shots worked well so I ended up feeling more pain than I should have. I have a high tolerance for pain but that was pretty bad. So since then I went to the dentist less and less - each time I went my anxiety just got worse. And with having kids and traveling, well the dentist fell off my priority list for myself. 3 years ago I got a really bad toothache - had someone at work look at it and they said I had a big cavity in my molar. I researched alternatives ways to fix toothaches and found that cod liver oil can actually reverse cavities. I knew my cavity was probably too big at that point to fix naturally but I gave it a go. Within a few days my toothache went away and I carried on with life. Had no sensitivities in my mouth and pretty much forgot about it - but all along taking the cod liver oil (with butter oil) on a daily basis. Then a few weeks ago that back molar broke - had about 1/4 of it come out - now I really had a hole in my tooth! UGH! So I sucked it up and called the dentist (mind you I've always had dental insurance so that was never a factor - just my fear). Went in today and here is what they found:
NO CAVITIES!!! I had a ton of plaque and moderate gingivitis. In fact the hygienist asked when I had the molar next to the broken one filled. I said I never had a filling except once on a baby tooth but that came out as a kid. She insisted this molar either had a filling or a sealant. I said I had sealants put on as a kid - but they were the yearly fluoride ones - nothing permanent. She looked confused and said my tooth was like a rock and it felt like a porcelain filling. Nope. Then she looked at the broken tooth and said she saw no decay at all so I must have fractured my tooth somehow - nope - have had no facial trauma or injuries at all. All I can think is the cod liver oil and butter oil did what it claims to do - rebuilds the teeth. There is no other logical explanation. So that was the good news! The bad news is I had so much plaque that my cleaning had to be divided into 2 visits - so I have to return next week! UGH! But they are really good at this office - she was nice enough to use the extra strength topical lidocaine to numb my gums during the cleaning as they were pretty sensitive. Hoping I have the will to return next week. I know I will end up going as my kids will pretty much make me go. They were really bothered when my tooth broke - so much that they got into brushing their teeth multiple times a day instead of just before bed. Now they are making sure hubby and I are brushing our teeth as well. :)
Well off to bed here soon. Hope everyone is having a good skin day! If not, hang in there - there is a light at the end of that very dark tunnel! Trust me - I was there once and I never could imagine ever seeing the light again! But I did! And you will too!
Sunday, June 29, 2014
Pictures of recent neck flare and healing ankles.
I finally got around to getting some pictures downloaded. Life is just so full now that I find the things I once obsessed over (like taking pictures of my skin) no longer matter to me as there are so many things to enjoy! :) Those still out there suffering...you will get there one day - you will come to a point where you just no longer think about your skin all the time. There are days I can go without giving it more than a split second thought. I still have mini flares here and there. Some last a few hours - and others have lasted a few days (like my recent neck flare). But if you compare them to pictures from my horrid 8 month long beginning flare, you will see why I call them mini-flares. There is just no comparison. Now I itch for a short time, followed by a few days of scabs and flaking, then healing. Currently my middle finger is flaring (started this morning). I no longer stress over this as I know within a day or two it will scab over and then heal. Some scabs though in some areas have just taken forever - there doesn't seem to be any rhyme or reason to it except the more distal the scab, the longer it seems to heal. My ankle and wrist scabs take forever! I had a forearm/wrist flare over a month ago and my wrist is still full of scabs - but no redness, itching, or swelling. Ooze is something of the distant past - haven't oozed in so many months I have lost count. The mini flares I have now remind me of my old eczema in many ways.
As you can see from the pictures below, my ankles have cleared dramatically. In fact I have been refusing to shave because I want to go get my legs waxed - but was just waiting for the final stages of healing. I have one more sore left on my R ankle - it is so small and never bothers me, I may just go get waxed and deal with any pain that may surface in that one area.
As for things like my supplements - just got in my new glutathione - the one that has the glutathione attached to an acetyl group - the pills are so much smaller. I want to say great things about it, but it might be coincidence (we all know though how I feel about coincidences). Let's just say today I went from about 40-50% energy level to about 70-80%. I have not stopped going since this afternoon about 2 hours after taking it. I had a HUGE mess of school books from the kids I needed to organize and put in storage from the school year - it looked like a 2-3 day project. But done in 2 hours! I am now onto other projects and then moving onto dinner. So I have a very good feeling this is the right one for me. I am down to taking my active B's only 2-3 times a week still. I am planning to get a energy reading done to tell what other body systems may need help - it's called total body analysis. I've done it in the past and it has completely surprised me how accurate it is. I actually plan to study it myself along with herbology. But the results will not be in for at least 2 weeks. I will keep you all posted.
Now for the pictures:
As you can see from the pictures below, my ankles have cleared dramatically. In fact I have been refusing to shave because I want to go get my legs waxed - but was just waiting for the final stages of healing. I have one more sore left on my R ankle - it is so small and never bothers me, I may just go get waxed and deal with any pain that may surface in that one area.
As for things like my supplements - just got in my new glutathione - the one that has the glutathione attached to an acetyl group - the pills are so much smaller. I want to say great things about it, but it might be coincidence (we all know though how I feel about coincidences). Let's just say today I went from about 40-50% energy level to about 70-80%. I have not stopped going since this afternoon about 2 hours after taking it. I had a HUGE mess of school books from the kids I needed to organize and put in storage from the school year - it looked like a 2-3 day project. But done in 2 hours! I am now onto other projects and then moving onto dinner. So I have a very good feeling this is the right one for me. I am down to taking my active B's only 2-3 times a week still. I am planning to get a energy reading done to tell what other body systems may need help - it's called total body analysis. I've done it in the past and it has completely surprised me how accurate it is. I actually plan to study it myself along with herbology. But the results will not be in for at least 2 weeks. I will keep you all posted.
Now for the pictures:
This is during the worst of my recent neck flare. None of it hurt - just itched for a few days. My skin color is very splotchy from tanning - all my years of scars stay white.
My scabby L wrist - the flare was over a month ago but like my ankles, the scabs are healing VERY SLOWLY! But around the scabs ny skin is very smooth. And of course no redness.
Right hand looking fantastic! Just 2 spots that are irritated. Funny how the scabs on the wrist and forearm are taking forever but any hand scabs I get seem to heal quickly - this picture was from about a week ago and those 2 spots are completely gone today.
Hairy Left leg/ankle - the one spot there healing is all pink/tan now. Just about all gone.
The one spot here is about half that size today - the marks on the back of my ankle were from wearing new shoes and developing a few blisters.
The rest of my body looks like this - clear and smooth! Minus my middle left finger and the left side of my face that flared for a few hours yesterday but now healing.
I decided that even if I have to have these mini flares on and off for the next 5 or even 10 years I wouldn't care. They hardly bother me - they are like having a mosquito bite - you know it's there, it itches here and there, but for the most part you forget about it unless you happen to glance at the part of the body you were bit. I sometimes get annoyed especially when I sweat and the itching intensifies in the few areas I am irritated, but those are few and far between.
Saturday, June 14, 2014
16 months!
Tomorrow will mark my 16 month anniversary off of topical steroids. I cannot believe that much time has passed! I only have a minute here - hopefully I can catch up this blog over the next few weeks.
Where have I been? A few will be secretly hoping I had a major flare and am too embarrassed to come here and blog. Sorry to disappoint, but that is not the case. I wish I could say all is good. Mostly good, but we have had a sad time in our family the last few weeks and have spent many days traveling out of town as a dear and close family member has passed. I also went back to work full time about 3 weeks ago so I literally have had no time to return emails, get on forums, or write on my blog. I've popped on Facebook here and there but that is all. A lot of things here at home have been neglected so now we are in the process of cleaning up around here after the last few weeks of things being thrown here and there.
My skin?? Haven't had time to think about it - but for the most part considering the stress, it's not too bad. I've had many mini-flares pop up almost daily. It switches from my face to my neck to my low back to my inner arms. I barely heal in one spot before another mini-flare comes on. It doesn't stop me obviously from doing anything. But a few days I've had to wear turtlenecks to work despite the heat because my neck was having a mini-flare. I haven't gone for my IV glutathione in over a week due to everything going on, but still healing in certain areas. My ankles look fabulous and am only dealing with one small sore on each ankle. My hands are surviving working - no flares there - just some dry areas that I put waterproof tape on during work so they don't crack open. So far so good. My legs remain clear as does most of my torso except the neck and the left lower back that re-flared a few days ago.
I have pictures on my camera I meant to post a few weeks ago - just not going to get to it just yet. Need to do a massive grocery shopping and one of the girls has been having a massive growth spurt and has very few summer clothes that fit - so need to get her some clothes. Working tomorrow and I think Tuesday and Wed. Also need to get some things for the garden. It's nice to be working again and having the money to buy the things we need. Hope everyone is doing well. I will do my best to get back to the emails and messages. But please give me a bit more time so I can get life back to normal around here.
Monday, May 26, 2014
Feeling great!
The last week was one of many detox reactions. Glutathione detoxifies the cells so it makes sense that since I started back on it I would have cleansing/detox reactions. These included fatigue (lying down and falling asleep in seconds), headaches (but had those from caffeine withdrawal as well), aches and pains in joints for a few days, hives (some people told me on FB that hives typically come close to the end of TSW), and crying jags. Last night was bad - hives all over my legs and crying for well over an hour. My husband didn't know what to do with me. Then this morning I woke up feeling like a million bucks! No seriously - today was the best I have felt in years! I was out the door first thing running errands, making granola, cooking steak and corn on the cob, cleaning the fridge, and cleaning the house. I never once felt tired the entire day - that has not happened once I think ever in my entire life. I've always been tired - I don't know how "normal" people feel.
So anyway - still have to take some updated pictures of all the healing. I've been too busy with life though to even think about my skin (which is an amazing feeling in of itself). I return to work full time on Wednesday and am looking forward to that paycheck! :) But more importantly I will be soooooo very happy to have hubby not working 60 hours a week any longer. <3
So anyway - still have to take some updated pictures of all the healing. I've been too busy with life though to even think about my skin (which is an amazing feeling in of itself). I return to work full time on Wednesday and am looking forward to that paycheck! :) But more importantly I will be soooooo very happy to have hubby not working 60 hours a week any longer. <3
Thursday, May 22, 2014
A quick update
I went back on the oral glutathione this past week. All I can say is WOW! It obviously was doing more for my healing than I had originally thought. I had a bit of a healing reaction the first few days - sleeping massive amounts! Like a 3 hour long nap in the middle of the day and then sleeping 10 hours at night. Then the healing itch began! It's not a bone deep itch, but I remember itching more on the glutathione - just an all over surface itch. It has since diminished the last 2 days or so, but the first 3-4 days were crazy itchy days. This makes me almost not want to go back to the IV glutathione. I'm still riding the fence on that decision. But oh the healing!! It is so nice!! I will be taking another picture of my right ankle in the next few days - the one ankle where healing has seemed to cease all together. Now the sores are about 40-50% healed just in this week alone. The rest of my areas are about 20% better in this one week. I never had the cycles that some people experience with TSW - flares and then periods of calm almost normal skin. My skin was always in a constant state of flaring from day 1. Then when I started therapy for the gene mutation and moisturizer withdrawal, I had a rapid state of healing all over except in what I call my problem areas - the neck, forearms, ankles, and previously the left lower back. All areas that cleared like my legs and upper arms and chest/back ave never experienced even a mini-flare since (that was October 2013 - over 7 months ago). They have remained smooth and clear. The problem areas have gone through cycles of what I call mini-flares - itching and irritated/broken skin. The red sleeves, redness in general, edema, and pain all ended 7 months ago. The oozing continued in very small amounts for about 4-5 months and have stopped all together for the past 2 months now I think. The cycles of mini-flares are short - often lasting a few hours where I have intense itching and scratching causes the skin to open up. I typically only flare in one or two small areas at a time. Some times I have weeks between mini-flares, and sometimes I will have one every day for a week. None of these mini-flares have made me put a stop to my life. The wind, air temperature, and so forth no longer bother my skin and haven't since last October. I also had severe body temperature irregulation. I was constantly cold and would get frantically itchy if exposed to heat. It was awful having to stay in a cool environment while feeling so cold....but warming up was 10 times worse. Since this winter, I no longer have this problem. I have enjoyed 80 degree days in the sun so far with no problems! I'm not exactly sure when this ended - it was gradual. I remember in the beginning of the winter we kept the house at 62-64 degrees - any warmer and I would itch so much more. Then towards the end of winter 68 degrees was too cold for me!
So now I am enjoying life - so much better than even before TSW! I go back to work full time next week - having given my hands a nice decent break from the harsh soaps at work. My hands are still dry, but the pink areas that would not tan are now tanning - which to me is a sign of healing. I only have a few pink areas left on a few fingers which I can easily wrap and work with.
I have done things this spring that I would not have dreamed of doing last year - like going to a parade, spending time outside working on the garden, and making impromptu trips across the country! It is such a blessing to have no more pain and only slight discomfort (if that). I am beyond thankful to all the bloggers out there on the subject of TSW as you spread the word about this condition. If it weren't for Kline's mom, I would not be where I am today. I am thankful to my ND for making me aware of my genetic problem which contributed heavily to my TSW. I will continue to post updates in the next few months as I wrap up this healing. And then I will move on like many others have in the past. I would have loved to do a big study on the MTHFR gene mutation, but will leave that up to the NEA if they so choose. I thank all of you for participating in the survey - of which I am submitting to the NEA for their review. I will put up the same survey for any others coming by who have been tested. My life took a severe beating due to TSW and now that I have it back, it is full and enriching. I have so many other wonderful projects I am working on to help others. I will be here for those that want to email me or comment on this blog. The information is here for those seeking it out. I now understand why so many of the people who have healed never returned to the forums or their blogs to update - at first I thought it was because it was a painful reminder. But I don't see it that way - for all last year I did very little except focus on my pain and suffering. Now that it's nearly all gone, I no longer feel a need to write so much. It's just a natural transition - like when you've graduated from school - do you keep going back to the classrooms? No, you move on. You come back every 5 -10 years (maybe) for reunions. You stay in contact with a few close friends. But you move on. It's a natural progression. Some people feel inclined to stay around - become a teacher/professor or whatnot. Just like some of the vets feel the need to stay around to help support the new people going through this. But it's not everyone's calling to stay around. It's not everyone's calling to be a teacher or a nurse or a dentist. We each have our own calling in life. Sometimes the calling changes for some. But not everyone going through TSW feels the need to stay around - I think many feel like I do that their blog is testimony enough and other things in life are more important. This may come across as callous or insensitive to those in the worst of TSW at this moment, but I assure you it is not meant that way at all - it just explains why so many people never come back. Some think it's because they have flared again and are too embarrassed at having declared themselves healed previously. That may be the case for a few, but I think most are just getting on with life - going back to their loved ones and fulfilling their own personal callings.
Not sure why I wrote all I did - just came to me - so much a "quick" update! :)
So now I am enjoying life - so much better than even before TSW! I go back to work full time next week - having given my hands a nice decent break from the harsh soaps at work. My hands are still dry, but the pink areas that would not tan are now tanning - which to me is a sign of healing. I only have a few pink areas left on a few fingers which I can easily wrap and work with.
I have done things this spring that I would not have dreamed of doing last year - like going to a parade, spending time outside working on the garden, and making impromptu trips across the country! It is such a blessing to have no more pain and only slight discomfort (if that). I am beyond thankful to all the bloggers out there on the subject of TSW as you spread the word about this condition. If it weren't for Kline's mom, I would not be where I am today. I am thankful to my ND for making me aware of my genetic problem which contributed heavily to my TSW. I will continue to post updates in the next few months as I wrap up this healing. And then I will move on like many others have in the past. I would have loved to do a big study on the MTHFR gene mutation, but will leave that up to the NEA if they so choose. I thank all of you for participating in the survey - of which I am submitting to the NEA for their review. I will put up the same survey for any others coming by who have been tested. My life took a severe beating due to TSW and now that I have it back, it is full and enriching. I have so many other wonderful projects I am working on to help others. I will be here for those that want to email me or comment on this blog. The information is here for those seeking it out. I now understand why so many of the people who have healed never returned to the forums or their blogs to update - at first I thought it was because it was a painful reminder. But I don't see it that way - for all last year I did very little except focus on my pain and suffering. Now that it's nearly all gone, I no longer feel a need to write so much. It's just a natural transition - like when you've graduated from school - do you keep going back to the classrooms? No, you move on. You come back every 5 -10 years (maybe) for reunions. You stay in contact with a few close friends. But you move on. It's a natural progression. Some people feel inclined to stay around - become a teacher/professor or whatnot. Just like some of the vets feel the need to stay around to help support the new people going through this. But it's not everyone's calling to stay around. It's not everyone's calling to be a teacher or a nurse or a dentist. We each have our own calling in life. Sometimes the calling changes for some. But not everyone going through TSW feels the need to stay around - I think many feel like I do that their blog is testimony enough and other things in life are more important. This may come across as callous or insensitive to those in the worst of TSW at this moment, but I assure you it is not meant that way at all - it just explains why so many people never come back. Some think it's because they have flared again and are too embarrassed at having declared themselves healed previously. That may be the case for a few, but I think most are just getting on with life - going back to their loved ones and fulfilling their own personal callings.
Not sure why I wrote all I did - just came to me - so much a "quick" update! :)
Saturday, May 17, 2014
PICTURES - finally!!!
I was never able to find my camera cord - however hubby reminded me that he plugged in my camera once to our cell phone charger on a trip when the battery was low and it charged just fine. Lo and behold - I was able to connect the cell phone USB cable from my camera to my phone and voila! Pictures downloaded! Yippee!
This week was super busy! Went for an acupuncture appointment which went well and my itching seemed to go away for about 2 days. For it to work well, one must go every 3-4 days if I read that correctly. That would get too expensive so I decided to research Qi Gong (thank you Dan for the information!) and will try acupuncture points at home.
I also saw my ND - he didn't think I was over methylating, but said even with the homozygous mutation he found that the majority of people do well on the 1000 mcg dosing of the active B12 and active folate. So I decreased my dose and will stay on that for the time being. He said I was probably in need of more antioxidants like Vitamin C, E and the glutathione. I still had some oral glutathione at home so he said if I started to feel better in terms of fatigue and healing then I should consider a month or two more of weekly IV glutathione since it seemed to help my overall well being before. I also realized I never bought more vitamin C which I ran out of a month or so ago - so I bought some more. He also wanted to check my thyroid due to my lingering fatigue and recent weight gain. But I declined at this point and started taking a few drops of Lugol's iodine a day to see if that doesn't help. That was about it. I told him about my stagnant healing - not getting any worse skin wise, but not getting better either. He reminded me with my type of gene mutation that my body has 40 years of cellular repair to catch up on...and that's for my whole body - not just for my skin. Oh, and for the ladies - he suggested I take some extra B6 and 5HTP the week before my period to see if that helps with my fatigue during that time of the month. He said the hormone changes can cause a shift in neurotransmitters causing the fatigue and mood swings. I will have to report back on all this in another month and let everyone know how all the changes have helped.
As for life - going well. Took a trip down to NC and back - got to see my sister and 4 of her children. Also got to see my Dad and step-mom. It was great seeing everyone - and while I missed my hubby and kids - it was nice to have some time to think for a few days without any distractions/ :) Also working on that contract to go back to work.
Diet wise - starting the Maker's Diet tomorrow. I went shopping today and stocked up on a few things. In the process at this moment of cooking 2 full chickens - when done I will strip them and shred the meat for chicken salads and for plain chicken to eat when one is hungry and "there's nothing to eat". Also made a dozen hard boiled eggs - again for lunches and salads. We will be on the strict version - 2 weeks of no dairy or grains. No sugars - the only fruit allowed are berries, grapefruit, and cherries. All veggies are organic. We use raw butter from grass-fed cows, All meats are organic and animals are fed food they were meant to eat. All fish is wild-caught. After 2 weeks we can add in fermented dairy and more fruits and beans. My kids have actually started asking to go back on this diet as the recent eating out from traveling so much this year has taken its toll.
So will my change in diet help my skin heal faster - alone by itself - probably a little bit, but taking the whole picture into consideration of diet, supplements, exercise and whatnot, I am hoping to see some improvement in the lingering fatigue and the lingering dry skin patches and sores.
Now for those pictures:
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This week was super busy! Went for an acupuncture appointment which went well and my itching seemed to go away for about 2 days. For it to work well, one must go every 3-4 days if I read that correctly. That would get too expensive so I decided to research Qi Gong (thank you Dan for the information!) and will try acupuncture points at home.
I also saw my ND - he didn't think I was over methylating, but said even with the homozygous mutation he found that the majority of people do well on the 1000 mcg dosing of the active B12 and active folate. So I decreased my dose and will stay on that for the time being. He said I was probably in need of more antioxidants like Vitamin C, E and the glutathione. I still had some oral glutathione at home so he said if I started to feel better in terms of fatigue and healing then I should consider a month or two more of weekly IV glutathione since it seemed to help my overall well being before. I also realized I never bought more vitamin C which I ran out of a month or so ago - so I bought some more. He also wanted to check my thyroid due to my lingering fatigue and recent weight gain. But I declined at this point and started taking a few drops of Lugol's iodine a day to see if that doesn't help. That was about it. I told him about my stagnant healing - not getting any worse skin wise, but not getting better either. He reminded me with my type of gene mutation that my body has 40 years of cellular repair to catch up on...and that's for my whole body - not just for my skin. Oh, and for the ladies - he suggested I take some extra B6 and 5HTP the week before my period to see if that helps with my fatigue during that time of the month. He said the hormone changes can cause a shift in neurotransmitters causing the fatigue and mood swings. I will have to report back on all this in another month and let everyone know how all the changes have helped.
As for life - going well. Took a trip down to NC and back - got to see my sister and 4 of her children. Also got to see my Dad and step-mom. It was great seeing everyone - and while I missed my hubby and kids - it was nice to have some time to think for a few days without any distractions/ :) Also working on that contract to go back to work.
Diet wise - starting the Maker's Diet tomorrow. I went shopping today and stocked up on a few things. In the process at this moment of cooking 2 full chickens - when done I will strip them and shred the meat for chicken salads and for plain chicken to eat when one is hungry and "there's nothing to eat". Also made a dozen hard boiled eggs - again for lunches and salads. We will be on the strict version - 2 weeks of no dairy or grains. No sugars - the only fruit allowed are berries, grapefruit, and cherries. All veggies are organic. We use raw butter from grass-fed cows, All meats are organic and animals are fed food they were meant to eat. All fish is wild-caught. After 2 weeks we can add in fermented dairy and more fruits and beans. My kids have actually started asking to go back on this diet as the recent eating out from traveling so much this year has taken its toll.
So will my change in diet help my skin heal faster - alone by itself - probably a little bit, but taking the whole picture into consideration of diet, supplements, exercise and whatnot, I am hoping to see some improvement in the lingering fatigue and the lingering dry skin patches and sores.
Now for those pictures:
Taken a few weeks ago with my 2 day flare of the neck - apparently my face was affected as well but I never noticed any itching of the face.
Face today - slightly red from tanning this morning (as evidenced by the white goggle eyes) - neck not flaring, but not healing from that flare - this is the stagnant skin I went to see my ND about.
Neck and chest a few weeks ago...again right after my 2 day flare.
Neck and chest today - didn't notice it was blurry until now - skin is slightly pink around broken skin - but this only bothers me about once a day when it gets itchy - otherwise I don't notice my skin is irritated - it doesn't burn or hurt - clothes, wind, air temperature all have no negative affects on this area (or any area of skin for that matter).
Left hand 2 weeks ago - so slow to heal!
Left hand today - obviously healing is taking place here and there, but slowly
Right hand a few weeks ago
Right hand today - this is where I have had the most healing in the last few weeks.
Left hand palm side a few weeks ago when the skin started getting dry patches and itchy
Same hand today - the skin continues to be really dry and itchy - scratching open a few areas here and there.
Left inner arm a few weeks ago
Left inner arm today - irritated and stagnant.
Left forearm/wrist where the few sore I have remain stagnant in healing. They don't bother me and hardly ever itch - it's just annoying really that they take forever to heal.
Right inner ankle where the sores still won't heal. I have the other older pictures on my other computer - but they can be found in older posts on my blog as well.
Left inner ankle - most sores are healed except for the one big one there. The purple areas are scars from the sores that have finally healed. Again - like my arm these sores don't bother me nor are they getting worse. They aren't infected, they hardly itch, they don't hurt, burn, or get bothered by anything I wear. It's just so frustrating they are still there.
Top of right foot where I had irritated skin months ago - just scarring and dry skin, but otherwise no problems.
Left foot with no problems!
One sore on right calf - otherwise legs are fantastic
Left lower back - see the left corner - old sores now healed - just left over scarring. Otherwise skin on back is great - a little dry up close, but doesn't itch at all.
Left elbow - new problem! This happened a week or so ago - left elbow was itchy - scratched and now this. This reminds me of my "old-school eczema". Just dry - otherwise it doesn't bother me.
Left leg smooth and clear (although I need to work on the fat deposits!)
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