....why eczema is deemed allergenic in nature when diagnosed in a child, yet auto-immune as an adult? I questioned this in my 20's. I couldn't wrap my brain around the doctors telling me my eczema was now auto-immune. I kept thinking that was wrong some how. That a disease does not change it's stripes going from childhood to adulthood. Juvenile (or type I) diabetes does not become adult diabetes (or type II) once the child turns 18. They will always have type I diabetes. It doesn't change. So how can eczema just change because you become an adult? It doesn't. However the use of steroid creams causes the body to reject the skin over time as the skin cells are no longer what the body deems as normal - they are different after being changed by the cortisone. The body rejects the changed cells, turning on the person's skin. We are more like organ donor rejects than burn victims.
For the last few months I couldn't understand why I have not seen one shred of improvement. Not one! I still have poor capillary refill - my skin stays white a long time after being rubbed. My skin cannot tolerate 20 minutes in the sun (this was tested last week and my face swelled up and oozed like crazy). I cannot stop itching no matter what I do or try. I cannot stop the pain or the dryness, or (fill in the blank). I am not getting better because my body has yet to make the right skin cells - the ones my body was meant to make. The cells replicate into the changed cortisone cells that my body rejects. So I itch and ooze and stay inflamed. I am at high risk for infections because my body is in a state of rejection. So my skin becomes infected with staph much more easily than normal people.
Anti-rejection or autoimmune drugs like cyclosporine or methotrexate would help because they suppress the immune system therefore suppressing the rejection. But taking those drugs leaves one open for infections and liver damage. I am not going to exchange one serious problem for another. I am going to let my body remember how to make the right skin cells without further harming my body. I will explore natural alternatives that may help the body remember the right way to make the right cells. But if that is not possible, then I will accept that time is my only option. I just wish there was a reset button for the body. A button we could press to tell it to go back to the way it is supposed to be - the way it was before steroid creams were slathered on our skin.
I am just thankful to finally figure this out. To finally know what is happening to my skin. Not knowing was killing me - I was trying to fix my skin without fully understanding what was happening to it through this process. Understanding things is crucial to me - I have a scientific/mathematical brain - I HAVE to know how things work. Not knowing bothers me to no end. Now that I know, I can move on - I can move through the pain and suffering much easier.
Thursday, September 26, 2013
Tuesday, September 24, 2013
Not ready to give up!
The past month has been a huge downer for me - of course I continue to flare - there is no relief. My skin was covered head to toe - red, oozing, flaking, open skin. Things were becoming extremely painful - more so than usual. There were multiple sores on my leg that were looking infected. My right leg was continuously a purple/red/blue color. I became more concerned as the days got worse. I called my derm and he agreed to another round of antibiotics. I did well the last time a few months back. So far about 3 days in and the pain is back to its usual amount and the sores are starting to heal. Eating plenty of probiotic rich foods to help with the gut.
So that is good news. However I cannot keep taking antibiotics. It's not healthy. And I really really really need to go back to work. We just got a notice in the mail that our taxes on our house that we rent is going up by a lot - it works out to be an additional $250 per month. I can't raise our tenant's rent that much so we are stuck with the additional expense. So depressing! But that got my mind working again - forcing me to think outside the box. So hubby and I sat down and talked this thing out.
We basically figured that while diet and supplements help support the body, it will not really help me heal faster as I once thought. Here's why - the skin is not making new healthy cells right now. Basically it takes about 1-2 months for a healthy cell to go from the bottom of the dermis to the top layer of skin. If this was just a matter of building new skin, we would have healthy skin in a matter of months, not years. Then we went back to Dr. Rapaport's research - where he states that the capillaries in the skin forget how to vasoconstrict because the cortisone has been vasoconstricting the capillaries for years (or however long cortisone was used). The vessels remain vasodilated, hence the redness and oozing. I remain red and continue to ooze after 7 months. Why is that? Because (according to our theory here) the cells in the capillaries and the skin have had their rNA altered from years of cortisone use. Basically the cells replicate with faulty rNA - so any new cells act like old cells. It takes the body years for it to remember how the skin cells are supposed to act. The shorter one uses cortisone cream, the shorter the healing (for some) because there were less cells altered. But the longer one uses, the more cells that are altered and therefore need to be fixed. The body has an inate ability to fix itself but with so many billions of cells having their memory and structure changed, the harder it is for the body to remember how the skin is supposed to work.
OK - I know that this is a bunch of mumbo jumbo to some and maybe our theory is off a bit, but it makes sense why diet has little impact on the length of recovery. So I started wondering how on earth can we get our skin cells to reboot - to remember sooner how they are supposed to act. Stem cell research came to mind first, but that is a bit too much to research. Then I thought back on some of the alternative medicines I have tried - energy work and whatnot. If the skin cells can start receiving the right signals on how to replicate and change into normal skin cells, then maybe healing can be sped up. So I am seeking out help from a few different people. I am writing them a letter and sending them Dr. Rapaport's paper. I am also seeing someone next week. I will definitely get back on here to report any news. I am not hopeful by any means - this is a long shot. But I cannot sit around doing nothing. I cannot give up trying not only to help myself, but to help thousands suffering from this. 1-2 years is way too long to be out of work for many people. 1-2 years of severe suffering is too much. I cannot go on just waiting for this to get better on its own. Maybe there is no answer. Maybe there is no cure except time. But I cannot give up just yet until I have exhausted all avenues. I am a 30+ year user so I have plenty of time before I am cured. I still have another year, if not longer before healing. But my life cannot be on hold for another year. And with my constant state of flaring with little to no break, I cannot accept another year of this torture.
So that is good news. However I cannot keep taking antibiotics. It's not healthy. And I really really really need to go back to work. We just got a notice in the mail that our taxes on our house that we rent is going up by a lot - it works out to be an additional $250 per month. I can't raise our tenant's rent that much so we are stuck with the additional expense. So depressing! But that got my mind working again - forcing me to think outside the box. So hubby and I sat down and talked this thing out.
We basically figured that while diet and supplements help support the body, it will not really help me heal faster as I once thought. Here's why - the skin is not making new healthy cells right now. Basically it takes about 1-2 months for a healthy cell to go from the bottom of the dermis to the top layer of skin. If this was just a matter of building new skin, we would have healthy skin in a matter of months, not years. Then we went back to Dr. Rapaport's research - where he states that the capillaries in the skin forget how to vasoconstrict because the cortisone has been vasoconstricting the capillaries for years (or however long cortisone was used). The vessels remain vasodilated, hence the redness and oozing. I remain red and continue to ooze after 7 months. Why is that? Because (according to our theory here) the cells in the capillaries and the skin have had their rNA altered from years of cortisone use. Basically the cells replicate with faulty rNA - so any new cells act like old cells. It takes the body years for it to remember how the skin cells are supposed to act. The shorter one uses cortisone cream, the shorter the healing (for some) because there were less cells altered. But the longer one uses, the more cells that are altered and therefore need to be fixed. The body has an inate ability to fix itself but with so many billions of cells having their memory and structure changed, the harder it is for the body to remember how the skin is supposed to work.
OK - I know that this is a bunch of mumbo jumbo to some and maybe our theory is off a bit, but it makes sense why diet has little impact on the length of recovery. So I started wondering how on earth can we get our skin cells to reboot - to remember sooner how they are supposed to act. Stem cell research came to mind first, but that is a bit too much to research. Then I thought back on some of the alternative medicines I have tried - energy work and whatnot. If the skin cells can start receiving the right signals on how to replicate and change into normal skin cells, then maybe healing can be sped up. So I am seeking out help from a few different people. I am writing them a letter and sending them Dr. Rapaport's paper. I am also seeing someone next week. I will definitely get back on here to report any news. I am not hopeful by any means - this is a long shot. But I cannot sit around doing nothing. I cannot give up trying not only to help myself, but to help thousands suffering from this. 1-2 years is way too long to be out of work for many people. 1-2 years of severe suffering is too much. I cannot go on just waiting for this to get better on its own. Maybe there is no answer. Maybe there is no cure except time. But I cannot give up just yet until I have exhausted all avenues. I am a 30+ year user so I have plenty of time before I am cured. I still have another year, if not longer before healing. But my life cannot be on hold for another year. And with my constant state of flaring with little to no break, I cannot accept another year of this torture.
Thursday, September 19, 2013
7.25 Month Update
Not much to update or talk about. I am still flaring - nothing new. One 2 week break out of 7 months doesn't seem fair, but such is life. I have good moments and bad moments. Mornings are better for me while the evenings are severe. I still manage to sleep 7-8 hours a night. Waking up between 5-7am every morning with an itch fest and then back to sleep for a few more hours. Not napping during the day as much - maybe 1-2 times per week now. The sun is still a big no-no. Found that out today. Went for a walk this morning for 20 minutes - it was sunny but cool. Came home to a major burning/oozing/itching fest to my face, neck, and hands - the only areas exposed. :( Was hoping the sun could start helping, but guess not.
Still oozing all over my legs, hands, small areas on neck, low back, chest, and the weirdest of all - my belly button. I wish I had better happier news, but that is not in the cards for me right now. There is no way I can work. Just the walk alone sent my legs into major swelling and oozing for hours afterwards. I wish I understood all this better. But I am back to not being able to focus. No more reading for me. I try to sew but make mistakes each and every time I hit the sewing machine.
Basically I am just sick and tired of all this - really and truly I am. I can barely function and make myself get through the motions of each day. Going out causes me great stress and anxiety having to be away from my ice.
Wish there was better news, but some of us get breaks while others have a constant flare. There is no rhyme or reason to this nasty thing. Just have to deal with it and pray the end of it comes soon. Still putting one foot in front of another - it's the best I can do right now. I have nothing else to give - sorry.
Still oozing all over my legs, hands, small areas on neck, low back, chest, and the weirdest of all - my belly button. I wish I had better happier news, but that is not in the cards for me right now. There is no way I can work. Just the walk alone sent my legs into major swelling and oozing for hours afterwards. I wish I understood all this better. But I am back to not being able to focus. No more reading for me. I try to sew but make mistakes each and every time I hit the sewing machine.
Basically I am just sick and tired of all this - really and truly I am. I can barely function and make myself get through the motions of each day. Going out causes me great stress and anxiety having to be away from my ice.
Wish there was better news, but some of us get breaks while others have a constant flare. There is no rhyme or reason to this nasty thing. Just have to deal with it and pray the end of it comes soon. Still putting one foot in front of another - it's the best I can do right now. I have nothing else to give - sorry.
Thursday, September 12, 2013
7 month pictures and a new approach.
I am still two days shy of the completion of 7 months of TSW, but since I had a bit of energy today, I thought I would take pictures. I have not been happy with my flaring - who would be? But seriously, I have had enough! I told my hubby I wanted to check myself into a hospital and ask them to induce a coma until I am finished with TSW. Of course that is not likely to happen nor do I really want that, but I really really really want this to end! For the last month or 2 I have really stopped with trying anything new. I was really hoping the emu oil would have been the ticket for me, but it has completely stopped working. So that set me into thinking mode (which can be dangerous!). Here are my thoughts and theories:
First I am starting to agree with the doctor in Japan who thinks not putting anything on the skin would help the skin to produce its own oil sooner. I have stopped putting stuff on my skin except for the occasional vaseline on the creases for less painful movement. I also am putting bacitracin on 3-4 times a day on the more red and infected looking areas. Other than that, I am done with the healing balms and oils.
Second I am beginning to wonder if the anti-inflammatory properties of the emu oil and healing balms was more harm than good. What we know is the skin has lost its natural ability to vasoconstrict the capillaries near the skin, hence all the redness and oozing (also from damage to the vessels). The vessels have to re-learn how to constrict and dilate naturally, so if we are creating a false vasoconstriction by applying anti-inflammatories, then aren't we prolonging the body's natural healing process? Of course I have no answer to this and it is only a theory, but it leads me back to the premise of natural healing. Our bodies have an amazing ability to heal themselves. I know healing balms are good for certain things, but our skin is not inflamed or red from infection. I fall back on my thinking that by providing the body the nutrients and fuel it needs to heal, then we will heal. By inhibiting the body from healing (lack of nutrients and other things like anti-inflammatories) then we prolong the healing process. So maybe I just let nature take its course right now and just provide support. When I stopped the emu oil on my hands, I had a rebound redness and swelling so it shows to me that it was not doing what I thought it was doing because I had my thinking wrong.
Anyway, here are the pictures: Again my camera whited out a lot of the redness. Basically I am red all over except my feet - I have a few patches on my feet, but you can see where the redness ends near my ankles. Guessing the redness will be upon my feet soon enough.
First I am starting to agree with the doctor in Japan who thinks not putting anything on the skin would help the skin to produce its own oil sooner. I have stopped putting stuff on my skin except for the occasional vaseline on the creases for less painful movement. I also am putting bacitracin on 3-4 times a day on the more red and infected looking areas. Other than that, I am done with the healing balms and oils.
Second I am beginning to wonder if the anti-inflammatory properties of the emu oil and healing balms was more harm than good. What we know is the skin has lost its natural ability to vasoconstrict the capillaries near the skin, hence all the redness and oozing (also from damage to the vessels). The vessels have to re-learn how to constrict and dilate naturally, so if we are creating a false vasoconstriction by applying anti-inflammatories, then aren't we prolonging the body's natural healing process? Of course I have no answer to this and it is only a theory, but it leads me back to the premise of natural healing. Our bodies have an amazing ability to heal themselves. I know healing balms are good for certain things, but our skin is not inflamed or red from infection. I fall back on my thinking that by providing the body the nutrients and fuel it needs to heal, then we will heal. By inhibiting the body from healing (lack of nutrients and other things like anti-inflammatories) then we prolong the healing process. So maybe I just let nature take its course right now and just provide support. When I stopped the emu oil on my hands, I had a rebound redness and swelling so it shows to me that it was not doing what I thought it was doing because I had my thinking wrong.
Anyway, here are the pictures: Again my camera whited out a lot of the redness. Basically I am red all over except my feet - I have a few patches on my feet, but you can see where the redness ends near my ankles. Guessing the redness will be upon my feet soon enough.
I can't believe how horrible my legs look - so red and purple with varicose veins that were not there prior to TSW. Swelling down on my arms and behind knees, but in full force on my lower legs and ankles and face. Hoping for some relief soon. But not holding my breath!
Tuesday, September 10, 2013
Just shy of completing 7 months.
In a few days will be my 7th month mark - 7 months of hell on earth. I am so thankful for the people with TSW out there who have blogged and started the support group. Without them, I would not have known about TSW and still be living with my "really bad eczema". I continue in flare mode - all over from face to toes. The other day I started itching my scalp and have a very small patch on the right side of my scalp. I am also oozing from my right ear. And the ooze is coming from all over as well. But those are my new areas. Not anywhere left to spread. It just will worsen now in the new areas. I am just plain numb with all this. I can't seem to process the severity of all this. I live on my couch, ice pack around my neck, crouched over in pain, wondering when all this will end. Wondering if my skin will ever heal. Logically I know it will, but right now it sure doesn't seem like it will. Just putting one foot in front of the other right now.
Wednesday, September 4, 2013
A little better and Responses to comments...
First off, today is a much better day - amazing how this TSW changes overnight. The first 5 months of TSW it seemed my changes would take days. I also had flares in differing stages, but overall my first 5 months was one big flare. Month 6 has seen a change. First I had those 2 glorious weeks of only ever so slight flaring in a few areas and a huge increase in energy. Then round 2 of flaring started. The past week and a half have been trying for me. The swelling, oozing, pain all came back ALL over at once. It was difficult and exhausting on me. I woke up this morning with little pain, little swelling, less redness, and a super itchy body. But it wasn't the bad itch that makes your skin shred off. Instead it was a flaky day - SUPER flaky day. I never had my whole body shed like this all at once before - again my body would go through the various stages of a flare differently in different parts of my body the first 5 months. It is as if my skin is strong all over today and only the top flakes are scratching off (except for the scabbed areas which unfortunately are plentiful today). I am so happy to have that oozing stop. It was just so much this past week!!
OK, I have been negligent in responding to comments. Initially I was so busy trying to get things done during my break. Then when my flare started back up, I was super exhausted. Today is a good catch up day. I am getting the kids schooling organized (in a major way) as I homeschool, and I am getting other things in life organized as well today. Tomorrow will be an errand day. So as for those lovely comments:
Lisa - Hey girl!!! Sorry to hear you are flaring as well! I miss you too! I hope you will find relief soon...so not fun this TSW thing! It will NOT break us - it will make us stronger!!! :)
Geanna - thanks for the tip about the adrenals and thyroid. I have had a big increase in energy levels while taking an adrenal supplement, but with all the vitamins and supplements I have been taking, I totally forgot about my thyroid supplement! I put 3-4 drops of Sea-Adine into a glass of water. Started yesterday and woke up today much better. I doubt a correlation, but one never knows! Definitely a big increase in energy today. So thanks again! Much appreciated!
Oregene92 - thank you for your kind words! I know we will look back on this and breathe a big sigh of relief that it is over. Doing better with mentally dealing with all this, but it still knocks me down flat on some days! Oy!
Miss Kitty - it is always so wonderful to hear from you!!! You are an inspiration to us all!! Your amazing humor and personality keep us smiling!! :)
Chantal - Oh dear! I hope you do not feel alone being in hermit mode - did not want to give the impression that I go out and do so much for the entire length of my TSW. I only had those 2 weeks of grand skin and high energy when I was able to go out on a near daily basis. For a few months before that I was only going out for groceries. It was VERY difficult and often painful, but with my husband working 60 hours a week, I had to start doing it. The first 3-4 months I didn't even go out for groceries unless I was having a decent day which only came 3-4 days per month. My husband did all errands and about 80% of the grocery shopping during those months on top of working overtime. (poor hubby). The one thing I did do was a speech and a day of video taping for an NRA video of me and my family....that was around month 2 and I thought I was going to die.
That's all I have time for now - have things to get done before dinner. Hope all is well!!! :)
OK, I have been negligent in responding to comments. Initially I was so busy trying to get things done during my break. Then when my flare started back up, I was super exhausted. Today is a good catch up day. I am getting the kids schooling organized (in a major way) as I homeschool, and I am getting other things in life organized as well today. Tomorrow will be an errand day. So as for those lovely comments:
Lisa - Hey girl!!! Sorry to hear you are flaring as well! I miss you too! I hope you will find relief soon...so not fun this TSW thing! It will NOT break us - it will make us stronger!!! :)
Geanna - thanks for the tip about the adrenals and thyroid. I have had a big increase in energy levels while taking an adrenal supplement, but with all the vitamins and supplements I have been taking, I totally forgot about my thyroid supplement! I put 3-4 drops of Sea-Adine into a glass of water. Started yesterday and woke up today much better. I doubt a correlation, but one never knows! Definitely a big increase in energy today. So thanks again! Much appreciated!
Oregene92 - thank you for your kind words! I know we will look back on this and breathe a big sigh of relief that it is over. Doing better with mentally dealing with all this, but it still knocks me down flat on some days! Oy!
Miss Kitty - it is always so wonderful to hear from you!!! You are an inspiration to us all!! Your amazing humor and personality keep us smiling!! :)
Chantal - Oh dear! I hope you do not feel alone being in hermit mode - did not want to give the impression that I go out and do so much for the entire length of my TSW. I only had those 2 weeks of grand skin and high energy when I was able to go out on a near daily basis. For a few months before that I was only going out for groceries. It was VERY difficult and often painful, but with my husband working 60 hours a week, I had to start doing it. The first 3-4 months I didn't even go out for groceries unless I was having a decent day which only came 3-4 days per month. My husband did all errands and about 80% of the grocery shopping during those months on top of working overtime. (poor hubby). The one thing I did do was a speech and a day of video taping for an NRA video of me and my family....that was around month 2 and I thought I was going to die.
That's all I have time for now - have things to get done before dinner. Hope all is well!!! :)
Tuesday, September 3, 2013
Still got the blues....
Unfortunately I have not gotten out of my funk yet. The flare is still raging and is making me one miserable person! I can barely get myself to read the news, read a book, or read other people's blogs. I actually don't feel depressed - I just feel a severe lack of energy and zeal for life right now. It's just not there folks. I think this has been my worst flaring yet - nearly head to toe. The only place not affected is my scalp. The rash and scaly skin has spread to most of my fingers and it is making its way slowly to my toes. I never had eczema on my toes - only once or twice did I have it on my ankles and top of my feet. Oh well, such is TSW! I can't win in the moisturizing area either. If I put Vaseline on, my skin feels good for up to 2 hours (sometimes only 45 minutes) and then I get the most intense burning itch! I have been using the emu oil but only in small amounts as I get intensely itchy immediately after putting it on and then it burns for awhile. Not comfortable at all. My hands are chewed up from scratching but the redness is down a lot since using the emu oil on them daily. I have also used it on my neck and chest. Making that area less irritable for me. My face has been swollen and oozing every day since last week. I can barely open my eyes in the morning. My legs are red completely above the knees and splotchy below the knees, but the redness is definitely spreading and coming together. My red pants should be complete in a week or two! My arms remain red and super itchy and scaly but thankfully not swollen or oozing. My right leg oozes a lot more than the left leg. It just gets wet wet wet! Yuck!! My back is a mess - won't even go there.
Otherwise life is going along. Trying to get my husband's work tops done, but the energy is just gone. I have tried reading a few books but cannot get past the first few paragraphs. I am still writing though here and there when the mood strikes. I basically sit around most days. Had to force myself to go to the store a few days ago and that was hard. My hair seems to have thinned again - I haven't noticed any major hair loss but it definitely didn't look right going out the other day.
As for diet and exercise.....exercise has been a no go the last 3 days....not one iota of energy. I have not been juicing but have been eating really well and taking all my vitamins and supplements - the same ones that gave me energy a few months ago. Now it's as if I'm not taking anything. Either my body is using all those nutrients for healing and has none to spear for daily energy or they just never worked in the first place. I really don't believe that - I truly feel a difference if I don't take them so I know they are doing something for my energy levels. I just wish I had some left over energy to get some things done around here. I have also been sleeping a lot since last week's horrific raging flare. I literally sleep 8-10 every night and an additional 2-3 hours during the day in 1-2 naps. Insane! But I have noticed my deep cuts to heal better and faster when I do nap.
Well here are some pics from today - some of the redness is whited out from the sun coming through the window, but my hands are not as red as they have been. My face is really really red and swollen and my legs are too.
Otherwise life is going along. Trying to get my husband's work tops done, but the energy is just gone. I have tried reading a few books but cannot get past the first few paragraphs. I am still writing though here and there when the mood strikes. I basically sit around most days. Had to force myself to go to the store a few days ago and that was hard. My hair seems to have thinned again - I haven't noticed any major hair loss but it definitely didn't look right going out the other day.
As for diet and exercise.....exercise has been a no go the last 3 days....not one iota of energy. I have not been juicing but have been eating really well and taking all my vitamins and supplements - the same ones that gave me energy a few months ago. Now it's as if I'm not taking anything. Either my body is using all those nutrients for healing and has none to spear for daily energy or they just never worked in the first place. I really don't believe that - I truly feel a difference if I don't take them so I know they are doing something for my energy levels. I just wish I had some left over energy to get some things done around here. I have also been sleeping a lot since last week's horrific raging flare. I literally sleep 8-10 every night and an additional 2-3 hours during the day in 1-2 naps. Insane! But I have noticed my deep cuts to heal better and faster when I do nap.
Well here are some pics from today - some of the redness is whited out from the sun coming through the window, but my hands are not as red as they have been. My face is really really red and swollen and my legs are too.
Face horribly bad tight now - cracks on my eyelids - lovely!
Neck and chest are actually more red than this picture shows....very itchy and excoriated.
Right lower leg - oozing from all the scratches. Much redder than this picture shows. Again - poor lighting in pics today.
Right foot - open sores on ankles and top of foot. No redness there yet. But it's spreading in that direction!
Left wrist - pink and very scaly. No matter what the rest of my body is doing, the wrists are always like this!
Right wrist - same as left.
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