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.

4 comments:

  1. Ugghghh those docotrs tick me right off! So annoying how they just won't listen to the patient! And you can't go freaking out patients with the "C"word! If you can just stay away from doctors...i think they just add more stress and harm than good! Hope you heal soon! xoxoxo

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  2. Thank you! This illness has a new meaning in my life now.
    I believe our bodies have the ability to heal.

    Here's a video I like to share with you.
    The biology of belief by Bruce Lipton
    https://www.youtube.com/watch?v=QBKoyrsuGoY

    Take Care
    FLoui

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  3. I am only in month 5/6 and have had a continuous flare from the beginning - just got a big break today. This is a long road and very debilitating. I have severe spots on my breasts near the arm pits so moving my arms is painful and a bra is a definite no-no. I have been out of work for 4 months - tried going back only one day a week last month and can't do it. Hang in there! You WILL heal - it is just unfortunate that we have no idea WHEN! But it will happen! I plan to buy that book! Sounds awesome!

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  4. Hello Tracy,

    Congrats on your break!!! I do get breaks, but I just don't get how one day I am almost done with this and BAM it comes back :(

    Anyways yes you should read Dr Lissa Rankin's book or be her fan on Facebook, she is a great writer!

    https://www.facebook.com/lissarankin

    This is one of her post on Facebook that I really enjoyed:

    "Our nervous systems can't tell the difference between dress rehearsing tragedy and real tragedy. As far as your amygdala is concerned, whether your child dies or whether you just imagine that your child dies, your "fight-or-flight" responses get triggered and your nervous system goes on red alert. Your stress responses flip on, your body is filled with cortisol and epinephrine, and your body reacts as if your child really did just die.

    And here's the kicker. Your body is brilliantly equipped with natural self-repair mechanisms that can kill cancer cells, fight infection and repair what breaks. But those self-repair mechanisms only operate when you're not in "fight-or-flight." So every time you dress rehearse tragedy, you put your body at risk of disease, disabling its ability to heal itself. Then BINGO. It’s no wonder you’re not at the top of your health game."

    Read more here...

    ReplyDelete