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!! :)
Saturday, August 16, 2014
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!