My flares just go on and on....

I am not one of those fortunate enough to have telltale markers of a flare with breaks in between.  My flares are seem like one big flare that goes on and on with different levels of intensity.  I had a nice break a few weeks back that lasted about 1-2 weeks.  The thing is my skin never even cleared during that time.  I still had redness all over that dulled a bit but never went away.  I had a few areas that still gave me trouble with oozing on a daily basis, but compared to what I had been through, those small things were nothing.  The pain had subsided and I had tons of energy.  But of course the flaring resumed.  It creeped up on me - ever so slowly it got worse until BAM, I was back into full on flare mode - oozing skin, skin that just sloughed off at the smallest scratching or rubbing, and the pain all over.  About 2-3 days ago, it slowed down a bit and my skin started shedding (as opposed to sloughing)....I could scratch a bit without opening new areas.  My skin felt super tight and dry.  The pain was still there.  But yesterday and today I am back to the oozing - but not all over....however it is pretty widespread.  For example my fingers are oozing and sloughing along with my upper arms, but my forearms are still in the dry mode.  It's frustrating because I have no set pattern other than I get a break about 1-2 days after my period starts but it lasts now for only 2-3 days.  That week long break I had was so nice and much needed.  But I am depressed about spending the next 6 months in a constant state of flaring.  Of course no one knows how long anyone will be going through this TSW and how their journey will change or not change along the way, but so far my body as been pretty consistent.

I feel I am back at square one.  My neck and face are now flaring with everywhere else.  The top of my feet have begun to be affected.  The only place not flaring is my scalp.  I am praying it does not get affected at all.  I think if it spreads there, I will lose my mind completely.  I am cold all the time again.  I sometimes wonder if my skin has healed at all these past 6 months or is it continuing to get rid of the poison?  Will it ever heal?  Everyone says yes, including the rational part of my brain.  But damn, I have my doubts right now.  The ooze smell is making me sick right now.  I am sick and tired of my body.  It disgusts me at this moment.

The good news is my energy levels, while down from a few weeks ago, are still pretty good.  I have read 2 books in the past 3 weeks which is amazing considering I did not read one book in the first 5 months of TSW.  I am used to reading about a book a week on average.  I know I will get out of this funk soon and get up and do things.  The gluten free muffins I made for my kids and hubby were a big hit and all gone.  They are begging for more, so I will get up and make them.  2 months ago that would not have been possible.  I also have 5 scrub tops I am in the process of making.  They are all cut out and now it is time to sew them up.  My husband and I are both nurses....he has always had a hard time finding guy friendly scrub tops, so I make them for him.  He has Star Wars, Batman, Marine Corps tops that are now starting to fray from years of use.  He needs more so I am back to sewing.  At this precise moment in time I don't want to bake or sew.  I don't want to do anything.  But I know I will.  I know I will get through this TSW and come out a winner in the end.  I may have lost the race today, but I will win this war.

Hoping all you skin warriors out there are doing well!  I thank everyone for stopping by my blog and thanks to those leaving comments!  It cheers me up!  I apologize for not responding or reading other blogs at this time.  The past week or so has been difficult.  To Eden's mom:  I got Eden's email....I have to set up my girls with their own email accounts.  But they are excited to write to Eden soon!  

Update: Things are bad.....really bad.

My few weeks of wonderfulness turned into breaking out here and there - nothing horrible at all.  Wednesday I called work and signed up to work this week Wed.  I thought I had a little pain and a lot of dry skin, but it was manageable.  Plus my energy levels had soared!  Come Thursday I went downhill - my lower legs had that super thin skin that breaks apart with even a minor touch.  A scratch would give me a wide deep fissure.  It was extremely painful.  I couldn't use my comb or massager to scratch as they broke my skin up just as bad.

We were planning to go away for the weekend to see family.  By Friday I was ready to cancel the trip.  A 4 hour car drive (one way) was looking like a bad idea given we were driving separately due to having to get things out of storage.  Well I decided not to break the plans - we were planning a one night stay at a hotel - my kids were ecstatic about going swimming and seeing family.  They have already had a boring summer due to me not being able to take them anywhere.  So off we went....

We had a great time, but I over did it.  I ended up taking my husband's grandmother to the casino.  Her health has been slowly going downhill and the casino was one place she enjoyed.  Last time she went was a year ago.  Thing was it was another 1.5 hours away.  And she loves to go early.  Like 5 am early.  We agreed on 7 am but I had a hard time sleeping and ended up picking her up at 6.  We had a great time and she was so excited to have gone out for the day.  But we had to drive home later that day.  Total of 7 hours of driving yesterday on 4 hours of sleep.  I was a bit tired when we made it home.

Now my skin is even worse....the super thin, break open skin has spread to my low back, arms, abdomen, chest, neck, and face.  Yep, it's back on the front of my neck - raw and oozing.  My legs were so bad I have wrapped them daily for the last 5 days - the vaseline dries up so fast and then the ooze sticks to the gauze - causing a lot of pain taking off the gauze.  Last night upon returning home I went right in the tub and allowed the water to soften the ooze so the gauze came off pain free.

Moving around is very painful.  If I put vaseline on, I can move for a few hours, but then I get that intense itching within 1-2 hours - I can't stand it.  So I stopped with the vaseline for now as I was just tearing my skin up even more.  I did run out of my emu oil, but my new shipment came in this morning.  I used the last of my bottle last night to spray on gauze to make it slightly damp and then wrapped the gauze on my lower legs.  This morning my legs felt so much better!  So I was excited to get more!!!  I now have my lower legs wrapped and my left arm.  Hopefully tonight those areas will be feeling better.  Good news is the emu oil does not make my skin itch.  But it doesn't help with bending at the creases of my joints.

I would think that at 6 months, my flaring wouldn't be as bad as it was in the beginning.  But it almost feels worse.  It is so widespread!  Getting out of the tub is more painful than the salt water stinging.  For some reason I am back to the air burning my skin getting out of the tub.  Forget taking a shower - that is now out for now.

I wish I had better news - especially for those just starting out.  I hate to be a downer, but I promised to be completely honest and not sugar coat anything.  I have to say though that if life is going to be similar or better to what I experienced during my 2 week break from flaring, then life is going to be FABULOUS!  I am glad that I got that break - it is helping me now through these really rough time.  I dream about all the things I am going to be able to do with all that energy!!  And to do things with so little pain!  Oh the wonder of it all!  I may have 6 more months of this or maybe 2 more years, but I know it will end and that carries me forth putting one foot in front of the other.

6 month pictures and toning things down...

At the end of this post will be pictures taken today - I am 6 months and 5 days into TSW - I had a nice 2 or so week break from my constant state of flaring, but am back to a full fledge flare.  I predicted this would happen when I went back on the clean eating diet - eating only natural organic foods the way God intended them to be eaten.  My philosophy is give the body the tools (nutrients) it needs to heal, the body will heal - in order to heal sometimes we have to get worse before we get better.  My face is pretty red here and there and will be very agitated on the right side and chin area at times.  My arms are a disaster again - swollen, oozing in a few spots, red, and agitated.  My legs are  splotchy red, a little swollen, and mad crazy itchy all over.  The back of my knees however seem to be a bit better and much less purple.  I am now getting the red itchy scaly rash in areas where it was not before - inside part of my left upper arm, my butt, and it's spreading on my hands.  My scalp remains untouched.  Not losing too much hair anymore.  Oil comes and goes with the hair - sometimes I get oil within 5 days, other times about 7.  I am only washing my hair once a week in hopes of it getting to produce some oil.  I am also limiting any lotions/salves on my skin to super painful areas and joints where my skin pulls and hurts with movement.  I use Vaseline for my legs and lower back.  I use shea butter for my face every 3-4 days.  And I use the emu oil on my hands and forearms.  They have gotten worse with this flare, but my left wrist is still much less red than the right - so my one month trial on the left wrist did do something!  My neck is complicated.  The back is about where it was before in flare mode.  The front of my neck is relatively clear, but has some growing dry itchy patches.  I sweat with exercise from the front of my neck and it really burns!  I get red irritated skin there after I work-out but it then clears in a few hours.  Same with the chest area.  I am really praying my neck is mostly healed and will not re-flare like it did before.  It was so bad in the first 3 -4 months I couldn't drive.  The pain was excruciating.  I do not want to go back there!  The pain in the rest of my body is manageable, but the skin in my neck was beyond sensitive.  I am hoping my body is healing in a top to bottom way.  That would mean my face and neck are almost in the clear. 

So that was a recap of what my skin is doing.  As for toning things down - I will be stepping away from this blog a bit more.  I was blogging nearly everyday.  The past few weeks I have really cut it back some.  I have seen many people who have TSW and blog, take some time away from the blogging and forum worlds in order to get a mental break from so much focus on the skin.  I can understand - I did the same thing with the forums around months 3-4.  I just couldn't deal with my own pain, let alone anyone else's.  It is a dark place to be for sure.  Then there are those who are mostly healed and are moving on with life.  I fall into that category to a point.  I am no where near healed.  I know this.  But about 2 weeks ago I "woke up". I have had a huge surge in energy and mental clarity.  It made me realize I was spending way too much time online than I was with my family.  I know I needed to focus on something other than my pain, and my fatigue was so severe I could barely make it through my days.  Sitting at the computer was sometimes an effort.  But the last 6 months not only have I been living a nightmare, but my kids and husband have suffered greatly with my indifference and severe lack of attention from me.  The last few weeks, I have really focused on listening to my kids and talking much more with my hubby.  My kids have really soaked up my attention - so much so it was painfully obvious just how neglectful I have been.  I met all their needs - food, shelter, clothing, and love.  But I was not able to do much with them.  My girls are on cloud 9 today.  I finally sat down to teach them how to sew.  They are 8 and 10 years old.  They have been begging me for the last year to teach them.  No time, no patience, then I got more sick with going through TSW.  Today I just took out some thread and needles and scraps of material.  WOW!!!  They have been sewing literally ALL day - only to break for chores and meals and school work.  They have not stopped thanking me.  As happy as it makes me, it also makes me cry in sadness that I have missed out on a lot of things with my kids because of my skin problem.  All last year my skin was getting worse and I was working and barely functioning.  So that is 1 1/2 years of missing out at least (not to mention the years I went through TSW without knowing it).  I am going to be eternally grateful to ITSAN and all the founders for their hard work and dedication to this cause.  I truly want to dedicate time as well, but that time is not now.  Now is the time I make amends to my family.  I may still be in a lot of pain and discomfort, but with my huge increase in energy, I need to take that and give it to my kids and hubby for now.  I will continue to blog about once a week - maybe a bit less.  But I will be praying for all of you warriors out there!  I will pray you find peace and strength to get through your journey.  I will pray that TSW becomes more acknowledged in the medical community so more people can heal.  I pray you find what works for you to get through the pain and suffering.  Hang in there as there IS a light at the end of this long, dark tunnel! 

 

Still splotchy and red but not as bad.  Notice the front of my neck is clear :)

 

Left arm - red and scaly and itchy

 

Right arm the same as left

 

Back of left arm - had bad "eczema" here for the 2 years leading up to TSW.

 

Right wrist - spreading up to crook of thumb and forefinger now. 

 

Left wrist in same lighting as right wrist above - much less red but still broken out.  Emu oil has done something here though!

 

Back of right knee - much less purple but my leg is now mostly red with splotchy areas.  Thinking I will be having "red pants" soon though!

 

Right leg - hard to see the redness here, but it's pretty much all red with a lot of scratches. 

 

Back of neck where it was a few months ago.

 

Right side of face a bit worse but still OK and tolerable. 

Happy 6 Months To Me!!!!

Technically my 6th month mark was yesterday, but was in no mood to be writing.  My mini-flare has turned into a major flare.  I know everyone has different viewpoints of what a flare is.  Basically I flare for 4 weeks straight - get a 2-4 day break and flare again.  My flares include redness, constant itching, pain, swelling, and oozing.  I do not have the symptoms constantly in all areas- typically the areas move around.  However certain areas remain in a constant state of flare for months - like my neck, arms, and chest.  Now my arms are flaring again, small areas on my neck, my chest, back, and my entire legs.  The swelling in my legs has become very uncomfortable the last 24-48 hours.  I had one day of the extreme pain I had in months 4 and 5, but now it is back to its normal state of minor pain.  Still doing well energy wise.  We are now officially on the GAPS diet.  Sleep is still going well as long as I take my Tylenol, Motrin, and Benadryl.  Overall I can't complain too much.  It's tolerable for now.  Even though I was flaring yesterday I still had the energy to grocery shop AND take the kids to the park!  I sat outside for about 10 minutes with my face and hands exposed - so nice not to be agitated in the sun and wind.  It was cool and windy, which 2 months ago would have seen me running for cover! 

Overall I feel I am past the absolute worst part of TSW.  Of course that can change, but I am hopeful given my energy levels are continuing to increase and my need for a nap has diminished a lot.  I have only napped once in the past 2 weeks.  Of course with my flare back, that may change.  I may be very uncomfortable and I hate the ooze - even though it is a small amount - but it's better because I no longer have the constant burning pain - that comes and goes now.  I still am not able to go back to work because my hands. while much much better with the emu oil, are still flaring.  I started putting the emu oil from my hands to my elbows on both arms.  Hoping in a few weeks to have only a pink shade for that area. 

The rest of life is OK.  Keeping on top of the kids with their schooling, keeping track of the bills, getting better with planning meals, cleaning much needed cluttered areas I neglected the last 6 months, and basically starting to live again.  I have been doing more writing which I find I am enjoying more and more.  Another article of mine was posted on cnn.com (about racism) and that brought more people to my articles on TSW.  Every little bit helps!  I am trying to find a way to write an article that will gain enough attention to be vetted about TSW. 

Hopefully everyone is doing OK!  Keep up the good fight! 

Mini-flare sticking around and Starting the GAPS diet

My mini-flare I have had since my PMS started is sticking around even though PMS time is over.  Not oozing like I did for a day, but my legs are pretty bad right now.  The skin is pretty sensitive and tears easily so I am trying to be extra careful.  Good news is my neck remains clear and my face is only slightly dry.  It's nice to have the redness and swelling down in those areas.  My arms are so-so.  Not flaring, but not great either - dry and itchy and red still.  But no swelling or oozing.  My back is just scaly, patchy, and itchy.  Overall still good!  I no longer have that intense nerve pain even when I do scratch the skin open so that is wonderful!! 

Today is our semi-official start of the GAPS diet.  I have a lot of broth and soup made and frozen.  I say semi because we had a small amount of fruit left over and I hate throwing away perfectly good food.  So I had some cantaloupe this morning while the kids shared a bit of that and had some blueberries, apples, and pears.  But now that breakfast is over, it is on to stage 1 - meats, soups, and veggies only with probiotics added to each meal.  I plan to work through the stages quickly this time around.  Once I am free and clear of TSW I plan to return to the intro stages of the diet and go through each stage much slower.  I do not want to be burdened down with too many reactions and nit picking over whether I am ready for a specific food or not while dealing with my skin.  I am doing the diet for over all health reasons - not just for my skin.  I have wanted to do this for years now but working full time always hindered me.  But now with not working and feeling better, I am embarking on this in order to bring some healing to my family as a whole.  We have followed a very clean diet for 3-4 years now with about 20% not so good foods.  We now have to be 100% all natural because hubby has had increasing IBS and one of the kids has had worsening GI problems.  Every time we "cheat" causes problems for us. And some of the organic things we buy like organic salad dressing just are not acceptable to the all natural eating concept.  They still contain preservatives. 

I may or not be able to blog this week depending on how we are all dealing with the diet changes.  I have been forewarned that the first 2 weeks can be very difficult on everyone, so no telling what we will experience.  But I am determined and will be putting things off if necessary in order to stay rigid to clean eating.  If I have to stop exercising for a week or two, fine.  Blogging and writing can wait.  But who knows, maybe we will all do well considering how long we have been eating well.  Hope everyone is having a good skin day! 

The Diet Debate

I am going to explain my views on why I feel nutrition and what we eat (our diet) is crucial for healing during TSW. Below I am going to quote research from reputable sources.  My own personal research has spanned the last 6 years (at least) from hundreds of sources.  TSW is relatively newly discovered and due to everyone taking a different path there is difficulty in doing a research study to show how diet affects the speed and quality of healing.  So I am going to quote from sources regarding nutrition's role in healing of wounds (pressure ulcers) and burns. Our skin is often likened to a burn victims but we also suffer from superficial wounds from all the scratching.  So I am tying this together.  I personally believe that nutrition plays a critical role in how fast we heal.  I personally have dealt with hundreds of pressure ulcers while working as a nurse and have even worked in a burn ICU and taken care of burn victims in the Emergency Room.  Regardless of your personal viewpoint of diet and nutrition, the following research has been studied for decades. 

The following quotes are from the Journal of Dental Research, "Factors Affecting Wound Healing", March 2010. 

"For more than 100 years, nutrition has been recognized as a very important factor that affects wound healing....
Protein is one of the most important nutrient factors affecting wound healing. A deficiency of protein can impair capillary formation, fibroblast proliferation, proteoglycan synthesis, collagen synthesis, and wound remodeling. A deficiency of protein also affects the immune system, with resultant decreased leukocyte phagocytosis and increased susceptibility to infection (Gogia, 1995). Collagen is the major protein component of connective tissue and is composed primarily of glycine, proline, and hydroxyproline. Collagen synthesis requires hydroxylation of lysine and proline, and co-factors such as ferrous iron and vitamin C. Impaired wound healing results from deficiencies in any of these co-factors (Campos et al., 2008)....
The effects of omega-3 fatty acids on wound healing are not conclusive. They have been reported to affect pro-inflammatory cytokine production, cell metabolism, gene expression, and angiogenesis in wound sites (McDaniel et al., 2008; Shingel et al., 2008). The true benefit of omega-3 fatty acids may be in their ability to improve the systemic immune function of the host, thus reducing infectious complications and improving survival (Arnold and Barbul, 2006)...
 Vitamin C has many roles in wound healing, and a deficiency in this vitamin has multiple effects on tissue repair. Vitamin C deficiencies result in impaired healing, and have been linked to decreased collagen synthesis and fibroblast proliferation, decreased angiogenesis, and increased capillary fragility. Also, vitamin C deficiency leads to an impaired immune response and increased susceptibility to wound infection (Arnold and Barbul, 2006; Campos et al., 2008). Similarly, vitamin A deficiency leads to impaired wound healing...
Vitamin E also has anti-inflammatory properties and has been suggested to have a role in decreasing excess scar formation in chronic wounds. Animal experiments have indicated that vitamin E supplementation is beneficial to wound healing (Arnold and Barbul, 2006; Burgess, 2008), and topical vitamin E has been widely promoted as an anti-scarring agent. However, clinical studies have not yet proved a role for topical vitamin E treatment in improving healing outcomes (Khoosal and Goldman, 2006)...
Several micronutrients have been shown to be important for optimal repair. Magnesium functions as a co-factor for many enzymes involved in protein and collagen synthesis, while copper is a required co-factor for cytochrome oxidase, for cytosolic anti-oxidant superoxide dismutase, and for the optimal cross-linking of collagen. Zinc is a co-factor for both RNA and DNA polymerase, and a zinc deficiency causes a significant impairment in wound healing. Iron is required for the hydroxylation of proline and lysine, and, as a result, severe iron deficiency can result in impaired collagen production (Shepherd, 2003; Arnold and Barbul, 2006; Campos et al., 2008)...
As indicated above, the nutritional needs of the wound are complex, suggesting that composite nutrition support would benefit both acute and chronic wound healing. A recent clinical research study examined the effects of a high-energy, protein-enriched supplement containing arginine, vitamin C, vitamin E, and zinc on chronic pressure ulcers and indicated that this high-energy and nutrition-enriched supplement improved overall healing of the pressure ulcer (Heyman et al., 2008). In summary, proteins, carbohydrates, arginine, glutamine, polyunsaturated fatty acids, vitamin A, vitamin C, vitamin E, magnesium, copper, zinc, and iron play a significant role in wound healing, and their deficiencies affect wound healing. Additional studies will be needed to fully understand how nutrition affects the healing response."

That article was rich in big medical and scientific words.  But the parts I picked out give a clear understanding of nutrition and wound healing.

The next article comes from The University of Maryland Medical Center website information on Burns:

"Following these tips may improve your healing and general health.

• Eat antioxidant foods, including fruits (such as blueberries, cherries, and tomatoes), and vegetables (such as squash and bell peppers). One study found that high doses of vitamin C post burn reduced fluid requirements by 40%, reduced burn tissue water content 50%, and reduced ventilator days.
• Avoid refined foods, such as white breads, pastas, and sugar.
• Eat fewer red meats and more lean meats, cold water fish, tofu (soy) or beans for protein.
• Use healthy cooking oils, such as olive oil or vegetable oil.
• Reduce or eliminate trans-fatty acids, found in commercially baked goods such as cookies, crackers, cakes, French fries, onion rings, donuts, processed foods, and margarine.
• Avoid caffeine and other stimulants, alcohol, and tobacco.
• Drink 6 - 8 glasses of filtered water daily.

The following supplements may also help. Be sure to ask your doctor before taking them if your burns are moderate or severe:

• A daily multivitamin, containing the antioxidant vitamins A, C, E, the B-complex vitamins and trace minerals such as magnesium, calcium, zinc, and selenium.
• Omega-3 fatty acids, such as fish oil, 1 - 2 capsules or 1 tablespoonful oil, 1 - 2 times daily, to help reduce inflammation, and for healing and immunity. Cold-water fish, such as salmon or halibut, are good sources, but you may need a supplement to get a higher dose. Omega-3 fatty acids can interact with blood-thinning medications such as warfarin (Coumadin) and aspirin, and may decrease clotting time.
• Vitamin C (1,000 mg 2 - 6 times per day) helps skin heal by enhancing new tissue growth and strength. Lower dose if diarrhea develops. You should use vitamin C only under a physician's guidance if you have cancer, certain blood iron disorders, kidney stones, diabetes, and a metabolic deficiency called "glucose 6 phosphate dehydrogenase deficiency" (G6PDD).
• Vitamin E (400 - 800 IU a day) promotes healing. May be used topically once the burn has healed and new skin has formed. Higher doses may help in healing burns. Talk to your doctor before taking vitamin E if you are scheduled to have surgery. Vitamin E can interact with certain medications, including, but not limited to antiplatelet / anticoagulant drugs. Speak with your doctor.
• Coenzyme Q10, 100 - 200 mg at bedtime, for antioxidant and immune activity. Coenzyme Q10 may have a blood-clotting effect and can interact with blood-thinning medications (anticoagulant / antiplatelet drugs).
• L-glutamine, 500 - 1,000 mg 3 times daily, for support of gastrointestinal health and immunity. Glutamine in high doses can affect mood particularly in patients with mania. There is some concern that people who are sensitive to MSG (monosodium glutamate) may also be sensitive to Glutamine. Patients with hepatic encephalopathy, severe liver disease with confusion, or a history of seizures, should not take Glutamine. Glutamine can interact with certain medications, so speak with your physician.
• Probiotic supplement (containing Lactobacillus acidophilus), 5 - 10 billion CFUs (colony forming units) a day. Taking antibiotics can upset the balance of bacteria in your intestines. Probiotics or "friendly" bacteria can help restore the balance, improving gastrointestinal and immune health. Some clinicians have raised concerns about giving probiotics to severely immunocompromised patients. More research is needed. Refrigerate your probiotic supplements for best results.

Herbs

Minor burns may be treated with herbs, but you should never take or apply any herb when you have moderate to severe burns. Call for emergency help first. Never apply herbs to an open wound.
Herbs are a way to strengthen and tone the body's systems. As with any therapy, you should work with your health care provider to diagnose your problem before starting treatment. You may use herbs as dried extracts (capsules, powders, teas), glycerites (glycerine extracts), or tinctures (alcohol extracts). Unless otherwise indicated, make teas with 1 tsp. herb per cup of hot water. Steep covered 5 - 10 minutes for leaf or flowers, and 10 - 20 minutes for roots. Drink 2 - 4 cups per day. You may use tinctures alone or in combination as noted.
These herbs may be applied topically (externally) to minor burns:

• Aloe (Aloe vera), as a cream or gel. Apply externally to the burned area, 3 - 4 times daily as needed, for soothing and healing.
• Calendula (Calendula officinalis), or pot marigold, as an ointment or a tea applied topically. To make tea from tincture, use 1/2 to 1 tsp. diluted in 1/4 cup water. You can also steep 1 tsp. of flowers in one cup of boiling water for 15 minutes, then strain and cool. Test skin first for any allergic reaction.
• Gotu kola (Centella asiatica) as a cream containing 1% of the herb, may help repair skin tissue.
• Propolis, a resin created by bees to build their hives, has been used historically to treat skin wounds. One study found that people given propolis to apply to minor burns healed as well as those treated with silver sulfadiazine, a prescription ointment. More research is needed, however. If you use propolis for a minor burn, test skin first for any reaction. Do not use propolis if you are allergic to bee products or salicylates.

Acupuncture

Electrical Stimulation
Transcutaneous electrical nerve stimulation (TENS) uses controlled, low voltage electrical stimulation of the skin to relieve pain. Recent studies have suggested that TENS applied to acupuncture points (called electroacupuncture) on the ear (auricular acupuncture) may relieve pain for people with burns.

Massage and Physical Therapy

Massage Therapy
People with burns suffer pain, itching, and anxiety both from the burn itself and during the healing of wounds. Some studies suggest that massage may help ease these symptoms in both the emergency care and recovery phases. People receiving a massage reported significantly less itching, pain, anxiety, and depressed mood compared to those who received standard care only. Ask your doctor before using massage after a burn...

Homeopathy

Although few studies have examined the effectiveness of specific homeopathic therapies in the treatment of burns, professional homeopaths may consider the following measures to treat first- and second- degree burns, and to aid recovery from any burn. Before prescribing a remedy, homeopaths take into account a person’s constitutional type -- your physical, emotional, and intellectual makeup. An experienced homeopath assesses all of these factors when determining the most appropriate treatment for each individual.

• Place the burned area in cold water until the pain goes away (this generally takes at least a few minutes).
• Arnica Montana -- taken orally immediately after the burn.
• Calendula -- apply to the skin for first-degree burns and sunburns. This remedy is sometimes considered the treatment of choice for children. Calendula may also be used in the healing stages of second- and third-degree burns to stimulate regrowth of skin and to decrease scar formation.
• Hypericum perforatum -- used on the skin if there are sharp, shooting pains with the burn.
• Urtica urens -- taken orally for stinging pains, itching, and swelling of first-degree burns. A cream or gel may also be applied to the skin for first-degree burns and sunburns. This remedy may be used for children.
• Causticum -- taken orally for burning pains with great rawness (as from an open wound) or when there are long term physical or emotional symptoms after a burn.
• Phosphorus -- taken by mouth for electrical burns, especially if the individual is easily startled and excitable.

Mind-Body Medicine

Hypnosis
Several studies suggest that hypnosis may reduce pain and anxiety and enhance relaxation in people with burns.
Therapeutic Touch
Therapeutic touch (TT) is based on the theory that the body, mind, and emotions form a complex energy field. Therapists seek to correct the body's imbalances by moving their hands just over the body, what they call "the laying on of hands." This practice has been used for a number of conditions including pain and anxiety, but studies have shown conflicting results. One study of patients hospitalized for severe burns suggests that TT may reduce pain and anxiety associated with burns.


Source: Burns | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/burns#ixzz2bcamXZ6d
University of Maryland Medical Center
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I included a few things not directly related to diet but thought they were important to include.  There are hundreds of other sources I could site.  But I wanted to provide a bit of evidence that diet has in healing.  From my standpoint, where you get your food is equally important.  Grass fed beef is better than regular beef at the store.  Organic eggs and chicken are better than non-organic.  Local produce from farms are better that produce trucked in from another part of the country.  The evidence from that is provided through the Weston A Price Foundation from many scientists and doctors.  You can visit them at http://www.westonaprice.org/.  For sources for raw milk and organic dairy and meat you can visit http://www.realmilk.com/.  That website offers sources of raw milk in the U.S. and many other countries. 

I personally am embarking on the GAPS diet to help heal my gut and in the process heal my immune system and skin.  (http://www.gapsdiet.com/)  I will be starting it in a few days and am prepared for my skin to actually get worse - my theory being that the body will have more nutrients for healing therefore healing more areas at once making my symptoms worse but for a shorter duration than if I continued with my regular way of healing.  This is not based on any scientific research - just my own observations of others and my own thinking. 

Emu Oil - Part 3!

I have received a few emails and comments asking where I get my emu oil.  I typically do not endorse just one place, however the emu oil I get has a few essential oils added to it so that may play a role in the healing process.  Therefore I wanted to share where I get it.  Just an FYI:  please read all the ingredients before purchasing to make sure there is nothing in that you know may irritate your already irritated skin!

http://www.montanaemuranch.com/emugency-all-purpose-spray/

Peaks and valleys of my flare

Since my flare returned this week after having a glorious 1 week break from my near entire body flare for months, I have noticed a pattern.  I call them my peaks and valleys.  I itch 24/7 still so no break there.  But the redness and swelling come and go in a very specific pattern - in the mornings I wake to very light pink skin and nearly no swelling.  Mornings are tough due to the ongoing fatigue.  I have a seriously hard time waking up.  But I get going by 11am most days.  The afternoons are my best time - I have more energy and my skin is still pink with some slight redness in my worst areas like the back of my knees, my thighs, and my arms.  Somewhere between 4 pm and 6 pm is when the "fun" begins!  I start off feeling very cold - the shivers that I have had this whole TSW.  I then get very fatigued and very anxious.  This is my worst time - I will often flip out over any small thing.  Every noise bothers me.  I then notice my skin getting very red and swollen.  I tend to scratch more during this time as I will get a feeling like bugs crawling under my skin - it drives me nuts!  By 8-9 pm I am calming down and typically will exercise and take a shower.  Although I have been trying to exercise every other day now since I seemed to be more tired with daily exercise.  The pain in my knees and wrists is at its worst right before bed.  I will still be swollen and red but the anxiety will be gone.

I am doing so much better with this flare.  It gives me so much more ability to get things done and not feel anxious, cold, and in pain all the time.  I am on a serious mission here people!  I sooooo need to get back to work.  Hubby working 60 hours a week has really drained him.  He then works around the house on his 2 days off.  Not only that but we bought 70 acres in KY and plan to start our own small farm there.  But we cannot move until I can go back to work as we need the dual income so we can put a house on the land to live in!  We bought this land 2 years ago and is our dream!  It is quiet with rolling hills and lots of green!

In order to get back to work, I will need to get my hands, wrists, and forearms cleared as much as possible.  Working as a nurse brings me into contact with loads of germs!  I can cover everything but my face and hands - and since I use my hands so much taking care of people, that is where I risk getting an infection - and that is how I believe my arms got infected a few weeks back when I attempted to go back to work one day a week.  Since the emu oil is showing good results, I am going to now spray it on both forearms, wrists, and hands each day - hopefully in 2 months they will be significantly better so I can return to work.

My only other concern is the fatigue - but that is where I am hoping the juicing and the GAPS diet will help.  The vitamins really were helping a lot with the fatigue so I know the juicing will help because the vitamins are "real" in the veggies!  :)

So now at 5 3/4 months in, I finally feel like I have a bit more control over this TSW.  I still fight the itching and the fatigue, but seeing as how my skin is more manageable and less painful, I can really get more done I feel less stressed and so much less depressed!  I know that can change if my flare decides to worsen, but for right now I am taking what positives I can and going with it!  I am hoping that the sun will start being my friend and not my enemy!  I would really love to get to that point where the sun helps the healing!

Keep strong everyone!

Emu Oil Part 2

Tomorrow marks the 4 week point to my emu oil trial.  No one asked me to do this and I am not endorsing any specific brand.  I had just heard from others that emu oil was very healing.  I am happy to say that my left hand, while still as itchy as the right hand, is less red and less swollen.  I even forgot to put it on most of last week during my calming time - barely thought about my skin and wasn't putting anything on it.  Given I only applied the emu oil for a total of 3 weeks, I am still impressed with the progress of my left hand.  So much so that I ordered more and plan to use it on one limb at a time.  I prefer personally not to slather myself with any one thing due to absorption and not knowing what the systemic reaction would be to any one product.  So for now I plan to spray the emu oil on my left arm - once it is looking like my hand, I will move on to the right arm, and so forth.

The pictures below are taken in the same light and on the same part of my couch.  I would have tried to get one of my kids to snap a shot of both my hands together, but they are on some mission outside....using their walkie-talkies, binoculars, etc.  Who knows when they will eventually come inside searching for food!  So I had to take the shots myself.

Right hand

Left hand where I used the emu oil on.

As for other things....I am still pretty tired.  Sleeping a lot.  Last night was my first difficult night in a long long time.  I fell asleep shortly after midnight and woke at 4:30 am.  Got up for a few minutes and tried to go back to sleep.  My body was very tired, but my brain would not shut down.  I wasn't even thinking of anything.....I was just mentally wide awake.  I tossed and turned until 7:30 am and fell back to sleep for 2 hours and got back up again.   Oh well - can't complain given how well I have slept through most of TSW.  

I am planning a huge diet change.  Was going to do the juicing thing, but decided that it was more important to put the whole family on the GAPS diet.  Been wanting to do this for the last 3 years, but it takes a lot of work and with working full time I was unable to do it.  Now that I am home, I think it is now or never given I will be back to work when I get better.  I plan to teach my kids how to prepare certain things so we can continue on the diet when I return to work.  They are 11, 10, and almost 8 years old.  I think they are ready to learn how to really cook.  They can heat things up in the microwave, turn the stove on/off, and cook veggies, but that is about it.  So I need to really get them learning how to prepare other things so they can help take some of the work off my shoulders.  

Life is relatively OK.  I am still ever so grateful for my neck not flaring with the return of my flare.  What a huge relief!  My legs are really bad.  I was trying to use a scalp massager for scratching, but it just didn't cut it - I found I was using my fingernails much more.  My skin is pretty torn on my arms and legs and shoulders from 3 days of scratching.  So I went back to my comb - I still open up a bit of skin when I comb my skin, but it's still better than my nails and gives me the same relief.  

Hope everyone is having a good skin day!  

Looking on the bright side AND a new book!!!

First, kudos to all those that put in so much time and effort to get out a children's book about TSW - it's called "Taming the Scratchy Monster".  I plan to buy this, but for an excellent review please visit Miss Kitty's awesome blog!  http://misskittydefeatseczema.blogspot.com/2013/08/book-review-taming-scratchy-monster.html  I cannot wait to read it!!
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So there is a bright side to this nasty flare that came back 2 days ago.  I wanted to wait a bit before I got excited about it in case it took a day or 2 to spread.  But this morning all is good in one aspect.  If you have been following my journey, you will know that my neck has been my worst area since the beginning - having to wear an ice pack around it nearly 24/7 for months on end.  When the flare returned this time, my neck was spared!!!  It is ever so slightly dry, but ice is not needed during the day.  I still go to bed with an ice pack around my neck - I think it's really just for comfort seeing as how it has been with me so long!  But I cannot tell you how wonderful it is to not be flaring on my neck!

Of course the rest of the flare is pretty severe.  I was in tears for quite a few hours yesterday - mostly from the pain.  I had been nearly pain free for a few weeks so when the flare came on and I accidentally scratched a few areas, the pain was intense!  It was sharp stabbing pain - pins and needles amplified by the nth degree! This morning though it is more tolerable.  So hopefully if I can keep from scratching, then the pain should go way down like it did before.

Hope everyone is having a good skin day!!!  :)

Why couldn't you leave me alone for a little while longer?

You're not welcome here - but I must accept your presence or lose my mind.  You left me alone for a whole week!  We have been together for the last 5 1/2 months straight when all of a sudden you left except for a tiny portion.  I was so happy to see you leave.  It was unexpected and the best 7 days I've had all year!  You are simply just not wanted.  You bring with you pain and suffering.  Some days you bring me to my knees in tears, crying for you to go away.  But you never listen.  You come and go whenever you see fit.  It's not fair - why can't you have some sort of pattern at least?  Then I could at least prepare for your coming and goings.  But no, you do what you want when you want. The good thing is I know some day you will leave and never return.  As much as I do not wish you upon my worst enemy, at least I know you will find another victim, someone who needs to be rid of the constant pain topical steroid induced eczema causes.  You will visit them and free them from their agony.  What they once thought as a lifetime ailment, they will be happy to know has a cure.  While you are the cure, your presence is too long and too painful.  But you will not knock me down and keep me down.  I will get up each and every time.  I will fight you tooth and nail.  I will attempt to get on with my life no matter how much you try to sabotage it.  I will look you in the eye and tell you that you suck and are rotten to the core.  You may control a lot of my life for some time, but it will not last!  I will not allow you to define who I am as a person!  If you stop me in my tracks I will double back and find another path.  You and I have a true love/hate relationship.  I love you for bringing me out of my eczema suffering for the last 40 years.  But I hate you just the same for what you make my body go through.  While you are healing my body, my body must go through the worst trials and tribulations it has seen to date.  But at least I will heal.  I will someday have no more itching, no more burning skin, no more open sores that never heal.  I guess 1-3 years is a small price to pay for such freedom, but you still suck!  Hello FLARE, welcome back!  I hate you!