Monday, August 4, 2014

Wishful thinking I be eczema free by Feb 2013! Healing does happen but a later date.

Was worried to update my condition for the longest time worrying I may jinx myself. In the past after I announced I was healed, my next round of flare would surprised me. My 3rd flare ended April 2014 that lasted as long and equally as painful as the last 2. My 3rd flare, I ceased all supplements and moisturizer. I limited my baths as it was drying out my skin.

During my 3rd flare I completely lost faith living and I could not see myself physically and mentally through go through another flare after this nether could I resonate with the words "You will see the light at the end of the tunnel".

I was also living in a negative space dealing with the past and stuck in a home I wasn't welcomed anymore. So I chose to leave NY. I swore many times I would never take another flight while I am flaring. Cold dry air, irregular body temperature, ooze sipping through my clothes and trying hard not to scratch wasn't the only the obstacles. I had to drink lots of water to combat the dry air at a high altitude and visiting the lavatory often. Once I am in the lavatory, I would not stop crying and neither could I stop scratching myself to pieces. And I totally set myself up for panic attacks. My longest flight was 24 hours and total journey was 30 hours. Sent me 16 days bedridden right after.

Anyways I made it to Playa Del Carmen, Mexico. My first week was a struggle as I was getting myself situated and I was all alone. 2nd week, I started visiting the crowded beach. Was too raw and embarrassed to enter the water fully clothed. By 3rd week, I made my way into the water. Is either I do or die, I didn't have a bathtub at my new place and Epsom or Dead Sea Salts are no where to be found in Yucatan area.

My skin began to heal from the sun and salt water but I was not confident this was over. I still could not enjoy my day to day activities. I would constantly look at my skin for any slight changes. I traumatized myself over worrying and anticipating for another flare. One day I was introduced to Jurema a ritual similar to Ayahuasca. The ritual helped me to gain sight of my condition and purpose of my life. My fear of TSW was meaningless and my panic attacks diminished. I took the courage to leave Mexico and do things I missed out during my withdrawal.

I not only see the light, I "felt" the light at the end of the tunnel. Last week, for the first time in over 2 years I could wear a bra and no one could tell I went through hell with my skin. I am living a normal life and eating foods that I was allergic to according to my skin prick and patch tests.

FYI my last flare a month ago was very minor, I would say microscopic. I had it on both inner arms and my stubborn area which is my right areola (never applied TS or immunosuppressant creams). My right inner arm did burn for 24 hours. I was surprised at this stage I was burning but glad to know that the burning was an indication of TSW. The one thing I couldn't live without is the sun of the beach! I have taken up a new hobby(Diving) and I am also back in the pool swimming every other day!

I am now steroid free for 23 months and 18 months free of synthetic drugs!
I have also started a closed group on Facebook titled "Stop Topical Steroids. Start Healing."

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!

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:

Book Description:
      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.

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:

Benefits of Dead Sea Salts:

Benefits of Himalayan Salts:

****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

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:

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