Wednesday, November 20, 2013

Please pray for me!

I am so desperate for help of any kind, as the itch has intensify. My skin is bone dry and baths no longer help. I am back scratching 18-22 hours for the past 10 days hoping it will subside but it got insane the past 2 days. Sleep what's that? You can only imagine what craziness that goes through my mind and how I ripped myself apart. Anyways my SOS message to friends and family: Please pray for me!
Here's some interesting answers!

Friend A
Okay maybe you need to take the medicine
I know you hate it but it helps you
Sorry it's addictive but obviously you need that
(Refering to roids)

Friend B
Get a life. You need a job!

Friend C
You need to distract yourself!

Friend D
Is all in the mind!

Friend E
Have you tried Benovate? It works for me.

Which is your favorite answer?

Sunday, October 13, 2013

Could it be that sun of the beach?

I wonder if that sun of the beach has anything to do with it. Stopped going to beach 2 weeks ago after beaching 2x/3x a week in the summer. Did it suppressed my flare? If I continue beaching, will I ever get another flare? The sun did stop my areolas from oozing. Writing is hard for me, here are some pictures.




Yes it is itchy as hell! Can't I sit up straight, as the folds under my breasts gets sweaty and makes me itch :(



Close up left breast, red dots filled with fluid are equally distributed on both breasts


Chills started 2 nights ago followed by chunks of hair falling out. This is surely TSW, eczema does not give you the chills, joint pain or hair loss. The longer I am going through with it, the surer I am. Nothing works during TSW. Not for me at least, no lotions, not even the coconut oil I been using all this while. Yesterday a dear friend help purchased Neem powder, but unfortunately is not pure. It felt good when I first applied it, cause it has a minty effect. It seems to calm the redness but once I washed it off, the dots are filled with fluid again and it itches.

Lesson learnt! Won't spend money on anything this time around. Nothing works besides dead sea salt baths and apple cider vinegar! Trust our body has the ability to heal itself!

Friday, October 11, 2013

Watch your thoughts.

I have been so proud of how I healed before my 1 year anniversary off roids. I posted on Facebook bragging this can be done in less than a year and gave tips on how I get over it so QUICKLY. I also planned what I should do and where I should live to avoid the cold weather approaching. I was so positive that my skin is feeling so normal that another flare is NEVER EVER coming back.

Is it true that what you think is what you become? Well every time I think for the best, it just doesn't seem to go that way. This is my 3rd flare after 3 months break. I feel defeated before this battle even begins. My mood is off the chart being a cry baby and a bitch. I had to start all over explaining my condition to friends and convinced them this is still part of TSW even I had 3rd doubt about it.  Well I doubt it the 2nd time during my 2nd flare.
How is this even possible after everything was so normal and the next day, it felt like the outer layer of your skin is stripped away and leave me so sensitive to any physical contact including the softest cotton that I been wearing all these time?

My breasts are back oozing and dripping with yellow fluid and my entire chest area and around my breasts are covered with combination of welts and tiny pimply dots. The pimply itchy dots are filled with colorless fluid. When they burst after scratching, you feel the hardened "millet seeds".

This has spread to my fold of my right arm, behind my right knee, scalp and my face in the past 2 days. My right elbow is hurting from what feels like arthritis.

Tell me how should I watch my thoughts when I am strongly believe I was getting better and this NEVER ever can happen? I am resentful towards people that preach what you think is what you become. They know what I went through and how positive I was the last 3 months and how I progressed and now this is my fault because my thoughts manifested to make this flare happen.





Back of my right knee, picture don't do justice how I feel

Friday, July 26, 2013

Fresh off the oven! Please watch and share this video!


Dangers of Topical Steroids. Can this happen to you? Perhaps you don't think it is possible, Just like myself and many others that I convinced. I made them take the challenge, stop using and see what happens. All 3 flared within 2 weeks. Next topic, how about Protopic and Elidel, they are non steroids. Will talk about my experience with both these ointments. Time for itchy scratchy!


video

Wednesday, July 24, 2013

Just when I thought my relationship with TSW is OVER!

I am entering 11 months off of steroids. Just when I thought this was over, my areolas mammae (to be exact) started oozing again. Back when it was oozing bad that left me bra less and topless (home bound for almost 6 months). I finally made a trip to see a breast surgeon (April) as suggested by my female friends!
Needless to say it was still cold out and I had to wear layers. My left arm was raw at the same time. Putting on clothes was such a challenge, I couldn't stretch my left arm all the way out to fit the sleeve of my shirt followed by my jacket. The moment my clothes were touching me it felt a million of fibers sticking to my raw skin. Even the softest fabric felt prickly. Many times, I have postponed my doctors' appointments or changed my mind to leave the house after I had my clothes on. Just couldn't make it out of the door without itching and feeling irritated

Back to a doctor's' appointment that was rescheduled for the 4th time. The receptionist is aware of my condition but it is still 2 hrs wait before I was allowed into the next waiting zone - the doctor's office for another 30 mins wait. I remembered that day so vividly, when I begged the receptionist, to let me see the doctor soon after 30 mins of arrival. Since I was all covered up and the receptionist wasn't convinced I had oozing raw skin, she was about to utter the same words she has said to many others who have asked "when will I be seen by the doctor?". Tears quickly filled up my eyes just because I was already very emotional and irritated from clothes attached to me. While seated, I constantly was pulling my shirt away from my chest and arm to avoid my wounds get stuck and ooze sipping through my shirt. I just can't wait for this to be OVER and get home to be in the tub.

Finally when I saw the doctor, he asked if I am a factory worker or I worked in a environment that handles chemicals. I said No! He then inspected my crusty areolas and mentioned that I could be suffering from a rare cancer called Paget's Disease. He instructed that I should get a sonogram since my breasts are oozing and inflamed, mamo or MRI would be too painful. Do you know they are actually MRI's designed specifically for breasts? He also suggested that I go see a dermatologist to get a skin biopsy to rule out Paget's Disease.

His opinion created the worst FEAR and stress, so I left with a worrying thought that I may be VERY sick and the fact that my breasts have been oozing since July 2012, that put me right into deep depression for the next few days. Luckily I set up another appointment with another breast doctor for a 2nd opinion.
FYI, I did apply TS(Topical Steroid) and Elidel on my breast when it first started as a small rash on my left areola back in May 2012.

This 2nd doctor would not give me a sonogram nor a skin biopsy as he clearly suggested this is "Classic Eczema". Instead he recommended a mamogram. I said my breasts are so inflamed and oozy how it this even possible. Do you understand that even putting over a top that touches my breasts hurts??? He said take 2 ibuprofen before the mamo, and you'll be fine. He went on and prescribed me Lidex 0.05% which is a Class 2 topical steroids(TS), even after I told him steroids have caused all this damage. He went on to assure me it is not the steroids, it's that I haven't found one that fits me and I have to keep trying to find the right one.

On one hand I was relieved to hear him say it is not Paget's, on the other hand, he is not even listening to me. He has his mind stuck on TS and assured me that they were other patients worst than me(nipple falling out) and TS has helped them. Goodness this doctor is out of my league. He just won't buy that TS is not the answer even after I showed him I have wounds everywhere else. Should I believe in him and his diagnosis?

So I went home with my worst worry, that none of these doctors are actually doing me any good.
Should I seek another doctor's advise? Finally sobbing that night in my tub and asked God for a sign.

Next morning, a friend randomly posted Dr Lissa Rankin, the author of Mind Over Medicine. Scientific proof you can heal yourself. That was the best message I have asked for and received! Thank you Universe!

Here's a video of Dr Lissa Rankin:
http://www.youtube.com/watch?v=LWQfe__fNbs

Book Description:
NEW YORK TIMES BESTSELLER
 
      We’ve been led to believe that when we get sick, it’s our genetics. Or it’s just bad luck—and doctors alone hold the keys to optimal health. For years, Lissa Rankin, M.D., believed the same. But when her own health started to suffer, and she turned to Western medical treatments, she found that they not only failed to help; they made her worse. So she decided to take matters into her own hands.
     Through her research, Dr. Rankin discovered that the health care she had been taught to practice was missing something crucial: a recognition of the body’s innate ability to self-repair and an appreciation for how we can control these self-healing mechanisms with the power of the mind. In an attempt to better understand this phenomenon, she explored peer-reviewed medical literature and found evidence that the medical establishment had been proving that the body can heal itself for over 50 years.
     Using extraordinary cases of spontaneous healing, Dr. Rankin shows how thoughts, feelings, and beliefs can alter the body’s physiology. She lays out the scientific data proving that loneliness, pessimism, depression, fear, and anxiety damage the body, while intimate relationships, gratitude, meditation, sex, and authentic self-expression flip on the body’s self-healing processes.
     In the final section of the book, you’ll be introduced to a radical new wellness model based on Dr. Rankin’s scientific findings. Her unique six-step program will help you uncover where things might be out of whack in your life—spiritually, creatively, environmentally, nutritionally, and in your professional and personal relationships—so that you can create a customized treatment plan aimed at bolstering these health-promoting pieces of your life. You’ll learn how to listen to your body’s “whispers” before they turn to life-threatening “screams” that can be prevented with proper self-care, and you’ll learn how to trust your inner guidance when making decisions about your health and your life.
     By the time you finish Mind Over Medicine, you’ll have made your own Diagnosis, written your own Prescription, and created a clear action plan designed to help you make your body ripe for miracles.

That was the day my breasts started to heal.

Anyways for whatever reasons, TSW still rules my life. I did have nice break from early June till mid July with mild to intense itch on random days. Sleep is much better. But past 3 weeks right after my period, my breasts started oozing again and my right body started to itch immensely. I am back in the tub average 3 hours a day. I do get breaks without baths for max of 2 days which is nice. But salt baths are nice too as it does help to clam the nerves and detox the body. I am hoping for the day I can wear a bra pain free and not having the fear of someone knocking me over when I am in a crowded train or the thought of someone falling over me when I am seated in a crowded bus and to be able to hug someone feeling their heartbeat next to mine!

The good thing with this warm weather I can wear silk tops without having layers that can cause friction on my breasts. Although I do stain my tops easily, so traveling more than 2 hrs needs a change of tops :(

I have come far, but I still can't believe how roids can mess me up after seeing such good progress. It is debilitating when there really is no timeline as to when this comes to an end. You can't plan too far ahead of time where you're going to be, not even for a short vacation. This does effect so many aspects of my life and for love ones that care for me.

Saturday, May 4, 2013

Salt baths that doctors tell you big NO NO! It will dry up your skin... REALLY?

Anyways back to salt baths. I know some like hot baths, I always itch after one. I did trial and error with different temp, room and cold on the upper body and hot lower body. 
It is not advisable to do hot baths during TSW. The heat induces NO(Nitric Oxide) just like how the sun does. Back in Asia, I would sit in the sun for 8 to 10 mins then jump into bath in room temp water or cold water. Never use sea salt that is for cooking. That makes your skin very very dry and itchy. Epsom salts were too costly in my country(Brunei) not to mentioned I need 2/3 cups a day. So instead I bath with citronella plant including roots that is grown in the wild. It helps to soothe the itch esp hives. Had hives 2 months in my first flare. During TSW, any skin conditions can surface on top of the itchy, oozing, weeping, raw skin. Is common to have hives,  sometimes chicken pox, shingles, herpes, cold sores may be added to the recipe.

Getting back on track. Bath salts does disinfects and dries up wounds, and it DOES NOT dry normal skin. You can always add coconut oil to baths, but I personally like the combo of epsom + dead sea salts. When I do have intense itch, I soak for 2/3 hours twice a day if needed. During TSW, the only relief is soaking long hours and taking naps in the tub (always good to invest in bath pillow). 


I alternate chlorine and non chlorine water because my shower is connected to a filter and not the lower faucet. Guess what I found, bath ball faucet filter right after I just purchased Secheam Prime concentrated conditioner. Secheam Prime eliminates chlorine for fish tank, chloramine and ammonia. It also detoxifies  heavy metals. If this works, this is the cheapest solution out there.

http://www.amazon.com/dp/B00025694O/ref=pe_309540_26725410_item

Chlorine does dry the skin out, so when I am desperate of a bath (in an itch frenzy) and can't wait for shower head to fill up my bathtub. I add ACV(apple cider vinegar) to my cold water that came from bottom faucet (can't be hot as it kills the enzymes in ACV), ACV acidic helps to soften the skin and also disinfect. 


Benefits of Epsom Salts:

http://www.foodrenegade.com/epsom-salt-baths-improve-health/

Benefits of Dead Sea Salts:

http://www.saltworks.us/salt_info/si_DeadSeaSalt_Benefits.asp

Benefits of Himalayan Salts:

http://products.mercola.com/himalayan-salt/bath-salt.htm

****Drink lots of water before and during baths!!! Salt baths reduce inflammation and also helps reduce stress. 


Here's are some of my bath concoctions.


1 cup Epsom + 1 Cup Dead Sea ( occasionally ACV or Tea Tree Oil) 

1 cup Epsom + 1 Cup Dead Sea + 1/2 cup Himalayan Salt.
Last night tried:
1 cup Activated charcoal + 1 cup Epsom Salts
http://www.charcoalremedies.com/cleansing_detox_program

Activated charcoal was messy, should have use a cloth bag... :(
Next time, I will try just pure activated charcoal


Waiting for my dried and powder seaweed to arrive. 


Benefits of Seaweed baths:

http://www.livestrong.com/article/285339-the-benefits-of-a-seaweed-bath-for-lymph-circulation/


****Remember to rinse off with water after your baths!!!

Thursday, May 2, 2013

Staying positive during TSW? Possible?


Yes I understand and agree that staying positive is crucial at all times. During TSW and staying positive is 2 separate equations. Is like a hurricane came unannounced! When this itchy devil possess you, everything around you fades out. You can be watching a movie, meditating, on the phone with someone, nothing can distract this itch. Once you start just touching the itchy part, game on! TSW is different than your usual eczema, this itch is contagious!
I do swear during TSW salt baths are a relief (Epsom, Dead Sea, Bamboo and Himalayan). Just wish I was fast enough to draw a bath!!!
Will talk more about baths in my next post!

How to stay positive?
We all know that exercise has positive impact on the brain. When one is ill, we have to adjust to the demands of the illness. That affects a person’s mobility and independence, and change the way a person lives, sees him- or herself, and/or relates to others. These requirements are stressful and cause a great amount of despair or sadness to the suffering individual and love ones. I am grateful for the friends, love and support from my boyfriend. Also many thanks to www.ITSAN.org. I wouldn't not have realized this is another TSW. (FYI, I must have been through a few unknowingly and my first in 89/90. that was more consistent flare all year. This withdrawal, I had break for 2 months, so I didn't think it was TSW.
Also like to give thanks to Dahn Yoga Master Amy and Mellyana for the unconditional love, visitations that comes with private lessons. Without these beautiful, caring people whom I only met 2 months ago, I don't think I can come this far.

Here are some exercises that is best for my condition at this moment :)

Intestine Exercise
http://www.youtube.com/watch?v=MKVgyyaOjJc

The Large Intestine Meridian contains 20 points in all, beginning at the outside corner of the index finger’s nail, following a path up the arm, dipping slightly towards the lungs after crossing the shoulder blade, and ending beside the nostril. It is associated with overall energy, bowel regularity, clear lungs and healthy skin.
Meridians, or energy channels, comprise the “energy body.” There are 12 major meridians, each connecting to a main internal organ. Meridians are paired, running symmetrically through the physical body and moved by Ki energy. Click on link below for more info.


Chest Exercise to Improve Lung Function.

Our skin cells require sufficient oxygen and blood supply for their normal work. Other than circulating more oxygen to the cells, deep breathing also helps in the circulation of lymph fluid. Children breathe deeply from their diaphragm; however, as we advance in age, our breathing shifts to the chest and becomes faster and shallower. Video below is a perfect simple chest workout.

http://www.youtube.com/watch?v=iIrAUL_VmiU

I also do meridian tapping and easily 20 mins go by without any effort. I tap from head to toes.
The tapping I do is different from EMF( Emotional Freedom Techniques)

Here is a video of where our meridian points are located:
http://www.youtube.com/watch?v=m2k9j9AYXKA

Followed by full body tapping
http://www.youtube.com/watch?v=bc0FiwEeSnc&list=PL8374F58C96C3E1C9

Remember to tap your liver, stomach and kidneys and say I love my liver & all your other organs!




Friday, April 26, 2013

Here's a list of steroids names use to treat Psoriasis and Atopic Dermatitis


This potency chart shows brand-name topical steroid medications along with the generic version. Please note that the percentage of ingredient in the medication does not always correlate with the strength of the steroid. This list is not comprehensive.

Brand nameGeneric name
CLASS 1—Superpotent
Clobex Lotion/Spray/Shampoo, 0.05%Clobetasol propionate
Cormax Cream/Solution, 0.05%Clobetasol propionate
Diprolene Ointment, 0.05%Betamethasone dipropionate
Olux E Foam, 0.05%Clobetasol propionate
Olux Foam, 0.05%Clobetasol propionate
Temovate Cream/Ointment/Solution, 0.05%Clobetasol propionate
Ultravate Cream/Ointment, 0.05%Halobetasol propionate
Vanos Cream, 0.1%Fluocinonide
Psorcon Ointment, 0.05%Diflorasone diacetate
Psorcon E Ointment, 0.05%Diflorasone diacetate
CLASS 2—Potent
Diprolene Cream AF, 0.05%Betamethasone dipropionate
Elocon Ointment, 0.1%Mometasone furoate
Florone Ointment, 0.05%Diflorasone diacetate
Halog Ointment/Cream, 0.1%Halcinonide
Lidex Cream/Gel/Ointment, 0.05%Fluocinonide
Psorcon Cream, 0.05%Diflorasone diacetate
Topicort Cream/Ointment, 0.25%Desoximetasone
Topicort Gel, 0.05%Desoximetasone
CLASS 3—Upper Mid-Strength
Cutivate Ointment, 0.005%Fluticasone propionate
Lidex-E Cream, 0.05%Fluocinonide
Luxiq Foam, 0.12%Betamethasone valerate
Topicort LP Cream, 0.05%Desoximetasone
CLASS 4—Mid-Strength
Cordran Ointment, 0.05%Flurandrenolide
Elocon Cream, 0.1%Mometasone furoate
Kenalog Cream/Spray, 0.1%Triamcinolone acetonide
Synalar Ointment, 0.03%Fluocinolone acetonide
Westcort Ointment, 0.2%Hydrocortisone valerate
CLASS 5—Lower Mid-Strength
Capex Shampoo, 0.01%Fluocinolone acetonide
Cordran Cream/Lotion/Tape, 0.05%Flurandrenolide
Cutivate Cream/Lotion, 0.05%Fluticasone propionate
DermAtop Cream, 0.1%Prednicarbate
DesOwen Lotion, 0.05%Desonide
Locoid Cream/Lotion/Ointment/Solution, 0.1%Hydrocortisone
Pandel Cream, 0.1%Hydrocortisone
Synalar Cream, 0.03%/0.01%Fluocinolone acetonide
Westcort Cream, 0.2%Hydrocortisone valerate
CLASS 6—Mild
Aclovate Cream/Ointment, 0.05%Alclometasone dipropionate
Derma-Smoothe/FS Oil, 0.01%Fluocinolone acetonide
Desonate Gel, 0.05%Desonide
Synalar Cream/Solution, 0.01%Fluocinolone acetonide
Verdeso Foam, 0.05%Desonide
CLASS 7—Least Potent
Cetacort Lotion, 0.5%/1%Hydrocortisone
Cortaid Cream/Spray/OintmentHydrocortisone
Hytone Cream/Lotion, 1%/2.5%Hydrocortisone
Micort-HC Cream, 2%/2.5%Hydrocortisone
Nutracort Lotion, 1%/2.5%Hydrocortisone
Synacort Cream, 1%/2.5%Hydrocortisone

http://www.psoriasis.org/about-psoriasis/treatments/topicals/steroids/potency-chart

Thursday, April 25, 2013

So what are the healing steps in TSW?

In TSW you don't know when you going to get better only time allows us to heal. The healing process varies between individuals from one to four years depending on the potency and duration of roids used.

Whats are the healing steps in TSW?
You can have one step forward and 2 steps back. So don't take this too seriously and think that your one good day is leading you to more the next few days. There will be ups and downs with TSW. This is what I am experiencing as I am healing.

1) Itch maybe accompanied by hives, shingles, herpes, cold sores, blurry vision, swollen lymph nodes, constipation, severe mood swings, panic attacks, dehydration (dry chapped broken lips).
2) Bleeding/Weeping/Oozing/Raw Skin
3) Tight dry skin accompanied by burning (skin on fire) and chills
4) Itching continues by drawing more blood
5) Itch stops, burning continues followed by chills and insomnia
FYI do not force yourself to sleep even if you didn't sleep for 2 days straight, can trigger panic attacks. Sleeping or anti anxiety meds won't work at this point. TSW can be that BRUTAL and no matter what you try, it has a mind of its OWN!
6) New spots developed ( right arm & right inner thigh, legs and face) Don't panic! ( Easier said that done :)
7) Cycle repeats over next 20- 25 days with new itch areas.

Advanced Healing
1) Intense itch kicks in! (6 to 8 hours no breaks)
2) Skin heals right away, then itch again (3-4 hours no breaks)
3) Intense burning, chills. Scratching from head to toe.
4) One day break
5) Itch comes back with vengeance - itching longer hours (12 to 18 hours)
6) Skin getting stronger, less bloody, less oozing
7) Itching, oozing, skin gets really tight; Burning and chills subsides replaced with "ants crawling sensation"
8) 2 days break... Yah!
9) Able to sleep 4 to 6 hours without waking up every hour.
10) 4 to 9 repeat, with itch getting less intense
11) Foul smell develops.. is that another advanced sign of healing?

FYI took 4 Doxepin and still wide awake!!! During TSW, nothing works, you can eat an apple and flare which you did not 2 days ago!





Wednesday, April 24, 2013

Please do not suggest or recommend seeing more doctors! The only doctor I would go see is Dr Rap!

Dear friends,

I have done plenty of research, seen a dime and dozens of  "specialists". If they meant well and the roids worked I be sleeping at this hour. All I am asking for is lent me an ear to rant. I had enough with these so called "doctors" who learnt from same "textbooks". Is easier to teach a dog not to bite than to educate doctor's on Topical Steroid Addiction/Withdrawal.

THEY ARE NOT INTERESTED TO KNOW... PERIOD. It only makes you angrier to convinced them that your symptoms are REAL. What do you mean burning? They don't like to know they are STUPID, so they make you the stupid one by telling you, is DEFINITELY chronic eczema! Now you doubt even if your gut feeling was right about ROIDS! You may have been through withdrawal once or many times. The symptoms were so unbearable (flares and other new areas affected) and doesn't seem to end, that's why you went back to same or another dermatologist to find out the same diagnosis as the previous one did, CHRONIC ECZEMA.
Is common for new derm to bad mouth the last derm for not giving you the right meds. So now this new derm, is going to pump up the potency of the roids (both oral and injected), higher strength TS, antibiotics, anti histamines (day and night). Guess what it works!!! 2 weeks later... You flare and burn again!!!

Trust your gut!
http://www.scientificamerican.com/article.cfm?id=gut-second-brain

Here's a video about Dr Rapaport
https://www.youtube.com/watch?v=t7dXTkq0fn0

Bottomline doctors are not healers! Their interest is to make money and fulfill their self fictitious importance - EGO!!! Let's face it, if they don't prescribe ROIDS they might as well say goodbye to their profession!

Monday, April 22, 2013

Marathon Continues...

I soaked in Epsom Salts with a touch of Himalayan Salt (out of Dead Sea Salts) at 12:30am. Couldn't soak more than an hour. It stung so bad, couldn't sit still in the tub. Bath can be so calming and yet stinging. Some days not sure which part of my body should go in first.

Right after bath I stayed up all night itching away. After the one day break past 2 days, my itch came back with vengeance  Ask God for a day relieve but didn't know I had to pay back :)

I did set up a TSW gift registry and today my first package arrived. Bamboo Salt roasted 9x. This product is expensive but I heard from another TSWer back in Brunei it is well worth it. Going to give it a try.

http://www.mybamboosalt.com/MSProductView.aspx?itemcode=S02-B&lang=&itemoptioncustom=

Going to make my bath!!!

Good Night!

Sunday, April 21, 2013

Itching Marathon without Terrorist Interference from 1a to 6a! Longest marathon I tore up :)

After a day break, you hoping for another. Payback time. I itch from 1a to 6a, at this point not much damaged can be done, since the skin is learning how to heal itself. When you stop or done itching, it burns. Nerves twitching is another symptom because the skin is so tight. Not sure between the intense burning & nerve pain or itching is more fun. Some TSWers were prescribed with gabapentin aka neurontin or Lyrica. These meds are used to treat chronic deep, radiating pain nerve pain caused by diabetes, shingles, fibromyalgia or a spinal cord injury.

Unfortunately I can only use ice and natural supplements. I am allergic to anti histamines, antibiotics, pain killers and codine. Sleeping meds don't work on me either. At least with natural supplements, I don't feel so guilty when I get a reaction and so far natural alternative didn't really caused any flare ups. Maybe they just placebo pills :)

brb...

It is taking so long just to draft this ... Itch is relentless. It has come to a point this is eating me alive. Trying to stay positive, is not easy. I meditate whenever I can, 2/3x a day, there's is no escape with the itch. You can do anything like bathing for hours and breathing exercise, once you stop, the itch welcomes you!

Itching now... Please god, just for today!!!

Saturday, April 20, 2013

One happy day break!!! Thanks to Margarita

Last night had a good break. Thanks to my dear friend, Margarita who came and helped me clean, cook, laundry and distracted me from scratching. She recently went to see John of God in Brazil and brought me some water from the casa. I was so down the day before, crying and all. 

I was able to fall asleep after an hour bath (usually 2 -3 hours). Is important during TSW to soak in Epsom Salts, Dead Sea Salts or Himalayan Salts to disinfect and calm ourselves. Play some soothing music in the background and have a sip a cup of hot chamomile tea while soaking in the bath. Make sure lights off and no mirrors! So I don't scare myself with me :)

Margarita had to leave at 4pm this afternoon. Took a short nap and woke up with panic attack because it got dark outside. Dreaded for the night to come. This is where itchy devil possess me. During TSW forget about sleeping, you will be waking up every sec because your skin is on fire and itchy. Past week I took ibuprofen 800mg, sometimes up to 1200 mg. When the burn subsides, the itch comes, You can't WIN!
Btw if you ever mentioned burning skin, Derm will diagnosed chronic eczema. How is that so, when does eczema burns? They don't get it, when they are wrong and they try to hide their stupidity by saying "TEXTBOOK" or "CLASSIC CHRONIC ECZEMA". 

There are currently only 2 doctors who identify/diagnose TSWers; one is Dr Rapaport in California and Dr Mototsugu Fukaya in Japan. Dr rap understands the burning, insomnia and intense itch very well. Anyways here's a video of Dr Rap..

http://www.youtube.com/watch?v=PNbtSGurllM

Friday, April 19, 2013

Pre Requisite quiting synthetic corticosteroids



http://members3.jcom.home.ne.jp/mioworld/E.prerequisite.html
Written by Japanese doctor

What is necessary to overcome these difficulties with less agony and avoid a setback to go back under protection of corticosteroids ?
I would like to present several prerequisites below for ones who want to leave corticosteroids.

1) motivation

Why don't you want to use corticosteroid ointments?
You must collect informations, think over and decide by yourself. Your own clear motivation will be essential to hold on.

2) strong will

Natural healing process is not easy. This will be a thorny path. Weak-willed person won't be able to endure.
Can you take the responsibility of your choice by yourself?

3) financial guarantee

4) helper

As you quit repressing symptoms, strong inflammation will occur.
It may prevent you from living and working as usual temporally or for quite a long time.
I suppose many AD patients cannot help choosing corticosteroids use because they feel the responsibility to live themselves or to work for their living.
But I dare ask you whether you really don't have another option.
Don't you think you may contrive if you want to realize it by all means?
It'll take a long time, but you will have better times as well as worse times. If you can manage today, tomorrow will come.
Maybe you are a gentle person who don't want to make a nuisance of yourself to others. But one cannnot live alone. It is the hard fact that you need other's help when you are in bad condition. Don't be too constrained. You may help them back when you become better.
About the helper, the most likely candidate will be your family member.
Maybe your parents will be the helper first. Considering they are much older than you, you'll agree that earlier practice will be preferable.
If you already have your spouse, this challenge will reveal whether each of you has a true respect to another or not.
You must be honest and considerate to the helper.
If your condition is not light, you will need plural helpers. Long-lasting hard days without recess will wear the helper out. You had better gaze around to find understanding relatives or friends.
Mental helpers are also important whom you can talk and confess difficulties.

5) social problem

During the term of withdrawal aggravation, or some more time, you won't be able to go to work or school.
So you'd better choose when to start. Times when have less influence to your career will be better. Generally, younger time will be fine. Younger times are also profitable since you can get earlier recovery because of more physical strength and less complicated situation.
Generally, a fixed social position is considered quite important for an adult as a proof of being a valuable person in the society. So you may feel rather alienated and frustrated if you lose or have lost your position due to your absence for recuperation.
But don't be too discouraged.
Is it so important as usual people say? Isn't it natural there are several setbacks or intervals during long lifetime? -Don't be tied to the fixed idea. You go your own way.

6) medical support

In Japan there're a small number of physicians who ackowledge AD patients who quit corticosteroid so far. Though I don't know much, I suppose situations will be similar in other countries. Therapists of alternative medicines may be more preferable than usual dermatologists.
Medical support will be important in case of severe secondary infection( caused by staphylococcus, streptococcus, and herpes simplex virus), some decline in general condition or severe acute allergic state like anaphylaxis. If you have severe facial eruptions or history of patting your face due to itch, ophthalmologist's examination is essential for fear of complications like cataract or detachment of retina.
But supportive physician is valid for every case. He(She) will give you medical informations, some drugs or remedies, and above all, mental assistance to overcome this long predicament.
You should take it to heart that the leading role of this precess is you, not the doctor. You must not depend on your doctor too much. There's not a certain remedy for AD to cure. So the main force to cure is the power for spontaneous healing in you. Doctors cannot give you the healing without your effort.
It is also important that you should take proper care of yourself.
Restoration of injured inflammed skin itself will require lots of energy from you every day.
Unwholesome living will mar your power for spontaneous healing and may cause not only secondary infections, but also an attack of anaphilaxis.
Recovering phase is another point to care. Rapid widening of range of activity to get back the delay may cause anaphylaxis, too.

Thursday, April 18, 2013

So I lied about being eczema free by end of Feb 2013!

I am not so much of a writer, so this is hard for me. I found out a month ago that I am battling with TSW (Topical Steroid Withdrawal)

Today wan't too bad of a day. The fact that 2 days ago my sweet gracious master from Dahn Yoga came by to give me private, topless meridian tapping and brain vibration exercise. I needed the tapping so bad that my body was heated up and I felt I was detoxing!!!

Anyways  being awake all last night and icing left arm till 7am. I quickly requested my bf(poopie) to draw me a bath with a mix of Dead Sea Salts and Himalayan Salt (one cup each). It lasted 2 hours and managed to take a nap in the bath tub. Day dreaming how my day would go. so I plan to go for a walk after my bath. Not everyday I like to do something outdoors. Been stuck inside my gloomy(shades down) apartment for almost 25 days now since the start of 2nd flare March 13th 2013. The only time I been outside was for doctor's appointments and Trader Joes' after. I missed a couple of appointments because my skin was oozing too much.

Anyways I ended up scratching my dried up arm... LOL
I am definitely taking this scratching challenge well. I was laughing so hard when I drew blood, my poopie turned around and asked if I am ok. He really thinks I been indoors too long and the laughter wasn't a good sign... LOL

Past week, I have been so depressed and depleted from this on going viscous no end itchy scratchy cycle. This is what TSW is all about. Massive mood swings, intense itch (every sec) no joke, it can hit you when you are in the middle of making a comment on Facebook and you go to say brb... and you never coming back for a good 1 to 3 hours. This is how relentless the itch can be. Once you start, the feeling of satisfaction turns into orgasmic minus the smell of blood.