- Itchiness: Mild
- Flaking : Mild
- Burning skin: Minimal
- Redness: Mild
- Soreness : Mild
- Weeping skin : Limbs, mild
- Mood : Irritated with profuse endless sweating through the night till 4am
Haha I habitually procrastinate writing my posts. But hey this round, there is good reason to do so! Because I am meant to write about not one, or two, but THREE meet-ups with fellow warriors! So all 3 must happen first ya?
For months, I was really troubled with my stalled progression. Recent few months I was more and more depressed about it. I got more active in Facebook searching for LOCAL warriors with similar usage history or severe TSW but didn’t find any new cases. I was desperately praying for such warriors to appear for the much needed encouragement and explanation as to why I was stalling. I got more and more depressed as time went by and I was about to lose my job. Finally, my prayers were answered.
Noting Adrenal Suppression
I chanced upon some Facebook posts about adrenal suppression noting a possibility for TSW to stall because of it. But to be certain, you need to get tested for it. I quickly went polyclinic for a referral to an endocrinologist. The appointment is in May. However, I do NOT actually hope to be tested positive for this, because I understand rebounds are common as it’s really hard to manage eczema with adrenal suppression even after being healed. I read through the signs that may show one has adrenal suppression and am glad that I do not display many of the signs. Keeping fingers crossed till I get tested.
Noting Protopic’s Effect as Immunosuppressant
Same thing, I chanced about someone overseas questioning whether she should start using Protopic to control and help with TSW. Of course, almost everyone tried to stop her. One of the comments caught my eye, saying how TSW is much tougher and longer when one has previously used Protopic.
One fellow warrior wrote very well in easy to understand terms for the harmful effects of immunosuppressant. Thank you sweet LULU for allowing me to post this in my blog!!!
I shuddered. I used 40 tubes in my late twenties. 40! A chord just struck on how I get recurring herpeticum and staph infections, and how my lack of sleep adds on to the already strained immunity, and how I have no progress at all. The horror of the realisation and fear follows. I instantly regretted starting TSW. I started it thinking it will take average 2 years. Had I known the immunosuppressant can prolong the TSW till no one can be certain how long….I really wouldn’t have risk stressing my hubby so much and losing my child’s growing up years. I would rather continue applying the steroid creams, until blindness sets in. If my child is yet to be an independent adult, then I shall just relocate overseas and kill myself or something.
I quickly posted all Facebook support groups that I am in, exclaiming how hopeless my situation is, and expressing fear of unknown prolonged TSW. Some responded to console me, that they have healed despite using Protopic for prolonged periods over large areas of the skin….. I calmed down and felt somewhat more….. sane.
Meeting Angel Gloria Tan
Her blog was one of the first local ones I noted when I started this journey. Although she included her e-mail address and several links to reach her, I couldn’t due to technical issues / faulty links.
Her strength really inspired me. I never knew she was one of the members in the local TSW Facebook support group. And then one day pon 7th March, I noticed a post from her…. Gloria Tan….. with a link to her blog…. and I thought to myself “It’s her!!! Finally! My answer to my depression with TSW!” I know she is not completely healed yet, but I also know she is in good position to support me.
I messaged her on Facebook, introducing myself and explaining I had wanted to reach her for guidance. Sweet Olive again took her active role as admin….. noted my post and actively arranged a meetup for the both of us.
(Phone lens was really oily, and thus quality is smudgy)
She was so kind, like all the other warriors I met. So kind. So helpful with her insights, sharing her journey, on how she coped. I asked her very specific questions regarding my skin… How the lesions will weep and the ooze travels UNDER my skin to different areas depending on my frequent sitting / sleeping postures. On how hot baths may be bad. On how diets affect. And of course, the main reason why I need her encouragement : my stalled progression. She assured me there ARE indeed cases where the flares are prolonged for more than a year. But still they heal. That my suspicions on Protopic’s effect and adrenal suppression are valid. She stressed THERE IS NO LOOKING BACK, that my 20months is a feat. I had to agree…..
I was expressing on how my depression hits and I felt the need to get professional help as I know I am losing sanity. She was also very honest on how TSW has indeed caused so much strain in family relationships, and how there are marriages that broke up due to TSW.
Not in her exact words, but she conveyed how TSW is not for everyone. Everyone has their threshold of pain, patience and mental strength to cope with TSW. And regrettably, not everyone can handle it. That should I feel I no longer have the mental capacity, that the insanity is a real concern, then perhaps, it’s best to let TSW stop. However, should people come and go in my life because of TSW, I should be prepared to accept that.
I guess she noted my emotional struggle before the meet up. She blessed me with a book “When God Doesn’t Make Sense” by James Dobson.
Touched. I am a stranger, yet she was so selfless in sharing. And she is reaching to other sufferers, even those she just see on the street. It’s refreshing to have met her in person. I am so thankful!!!
This boost of encouragement really relaxed me down ALOT. FINALLY I moved on, no longer wanting to question on stalled progression. Noting I AM ON THE RIGHT TRACK TO HEALING.
I hope Gloria gets complete healing soon in months to come, and encourage even more as a healed warrior. I shall wait.
Meeting Angel Eu Huiling
In my previous post, I have already mentioned this lady and her news.
I take her as my number 2 answer for encouragement and contacted her at once when I noted her on the local Facebook support group on 1st April. I was well aware her inbox would have been flooded by many and was skeptical on whether she would even respond to me. I wrote with sincerity :
“hi, I would like to connect with you n draw strength from ur experience . I m 38 year old mother of one, 20mths in withdrawal stalling no progress n depressed. my story zombiebegone.wordpress.com
thank u in advance to reach out to me
I m miserable“
She responded the same day. I was so happy! I felt like I could go buy TOTO and strike immediately! But no, I didn’t go to the lottery booths….
Anyhow we connected easily. Her eagerness to help showed in her immediate arrangement for me to meet her and her doctor in the next 2 hours. I also mentioned how I wished her to meet my parents to remind them TSW is the correct thing to do, and she came to my house straight after the medical consultation.
WOW. I am but a stranger to her. Talk about helping in ALL ways possible. I am one lucky gal.
This is ONE STRONG LADY. Here, we are talking about a person who starts her TSW WITHOUT any available anecdotal evidence to refer to. No, there was no video from Dr Rappaport online yet. No, there was no easily available information for her to back her decisions on. She just plainly started TSW because the steroids were no longer working on her and making things worse. She based on her reasoning and argued and fight through derms after derms insisting no more steroids be used. This is so for her first 4 years of TSW when she started going in and out of hospital. She also shared with me her struggles in her family to cope with TSW, how TSW impacted her social life, work, finances, and of course the physical pain she went through.
I salute her. How much confidence and mental strength one needs to go through the same!
This eventful April Fools Day left me much assured, happy and calm. I KNOW she is the one who can inspire MANY, and she is the one who can help Grace achieve massive awareness. Even more so when she finally heals. I wish her speedy recovery. I am grateful and honoured to have spent time with her.
Which brings me to the next meet-up……….
Meeting Angel Grace Ng
Well, not my first meet-up with her yes. But being the head of the local Facebook TSW support group, this busy lady can’t be meeting existing warriors often. I am lucky I had this second “consultation” with her today. And although the main purpose was really for her to meet a new case, I was lucky to be able to “gatecrash” the date.
Grace had healed beautifully from the last meet-up last year after my herpeticum. She knows I want to see prove to convince myself healing is real… healing for people who have worse steroid usage history is REAL. She is one such case. This is the poor girl in TSW.
Her elephant skin at her knees, GONE. I see no scars even. Just dry skin for now, but slowly smoothening out. She can even grow nails and NOT hurt her skin!!!! Look at the glow!!! She is chirpy as usual, always spreading happiness and assurance to me.
Again, like I did with Gloria, I seeked assurance that I am healing well. That my prolonged flare is ok. That adrenal suppression and Protopic might be reasons for stalling but yet I am correct to keep going on TSW. That ooze happens to move under the skin. That sweating is good. That I resembled her when she was also in the midst of healing.
Another relief for me.
Again, I also want to wish her well. I remember I ever told her I want to see her eat beef and cheese. I hope that day comes soon. Her healing will REALLY assure me.
With all 3 angels, I touched on the subject on how I noted TSW sufferers overseas could show obvious improvements in a year, compared to local ones who do not heal as well. I told them of my noted tendency to be worse whenever it rains, and that I believe humidity affects rate of healing. That we heal slower compared to those in the West mainly due to humidity and water quality. Some of them agree this is so, but no one is very certain. You may think “how is this important? as long as you have locals who do heal in time”. Because I tend to refer to any case I can find, more often than not overseas, on the methods used to deal with TSW and on why some heal faster.
See, I need SO MANY people to assure me. I am just lucky my prayers are answered in time. I was really going insane, there was no one to understand my anxiety. No one I could cry out to. And these angels were sent, to answer my desperate pleas.
I am grateful.