TSW monster is back
"Marissa, what have you done to yourself?"
Tears flowed uncontrollably as I stared at the bloody mess I created on my arms, the crevices in front of my elbows to be exact. The once normal looking skin, free of open wounds (that's probably as normal as it would get for me) turned into a red angry dry patch that threatened to ooze with a slight touch in a matter of days. I must admit, I got too carried away in finding temporary relief from the incurable itch deep within my skin. I felt like a hideous monster who had no control wrecking havoc and damage to my own skin.
It has been awhile since the TSW monster attacked leading to a flare up. Some of you must be wondering what on earth is TSW. TSW is known as Topical Steroid Withdrawal. Doctors have been prescribing steroids to patients who have eczema. However, steroids do not solve the main issue of eczema. It just hides it. Born with eczema as a baby, I was not spared from using steroids. I believe my parents started using topical steroid creams on me before I was even a month old...
Steroids are like drugs. Once you use it, you have to keep using it. You even upgrade to higher strength steroids as your skin/body becomes immune to the ones initially prescribed. Once you stop using steroids, the rash or eczema comes back, even stronger and more intense than before. When I turned 20, I started noticing that my skin never really got better with steroids. In fact it was always red and really sensitive whenever steroids were applied. Soon, I discover many people were experiencing similar things and Topical Steroid Withdrawal actually existed. Many who went through TSW allowed their skin to be free of steroids and got back better skin conditions. However, many medical doctors do not recognise TSW and continue prescribing steroids which are ever so harmful.
It is day 689 since I stopped steroids. I thought the darkest days have been over but I spoke too soon. (edit: Not to sound like an ingrate, I am grateful for the 500+ days where my skin was pretty normal.)
Just 2 days ago, I started noticing a flare up. Patches of skin on my limbs as well as my neck started becoming really dry and flaky. Particularly the areas I used to apply steroids on. These red patches were hot to the touch. I thought it was the usual eczema skin flare followed by the itch, shedding and everything back to normal. But I failed to recognise the TSW symptoms that are haunting me.
Tears flowed uncontrollably as I stared at the bloody mess I created on my arms, the crevices in front of my elbows to be exact. The once normal looking skin, free of open wounds (that's probably as normal as it would get for me) turned into a red angry dry patch that threatened to ooze with a slight touch in a matter of days. I must admit, I got too carried away in finding temporary relief from the incurable itch deep within my skin. I felt like a hideous monster who had no control wrecking havoc and damage to my own skin.
It has been awhile since the TSW monster attacked leading to a flare up. Some of you must be wondering what on earth is TSW. TSW is known as Topical Steroid Withdrawal. Doctors have been prescribing steroids to patients who have eczema. However, steroids do not solve the main issue of eczema. It just hides it. Born with eczema as a baby, I was not spared from using steroids. I believe my parents started using topical steroid creams on me before I was even a month old...
Steroids are like drugs. Once you use it, you have to keep using it. You even upgrade to higher strength steroids as your skin/body becomes immune to the ones initially prescribed. Once you stop using steroids, the rash or eczema comes back, even stronger and more intense than before. When I turned 20, I started noticing that my skin never really got better with steroids. In fact it was always red and really sensitive whenever steroids were applied. Soon, I discover many people were experiencing similar things and Topical Steroid Withdrawal actually existed. Many who went through TSW allowed their skin to be free of steroids and got back better skin conditions. However, many medical doctors do not recognise TSW and continue prescribing steroids which are ever so harmful.
It is day 689 since I stopped steroids. I thought the darkest days have been over but I spoke too soon. (edit: Not to sound like an ingrate, I am grateful for the 500+ days where my skin was pretty normal.)
Just 2 days ago, I started noticing a flare up. Patches of skin on my limbs as well as my neck started becoming really dry and flaky. Particularly the areas I used to apply steroids on. These red patches were hot to the touch. I thought it was the usual eczema skin flare followed by the itch, shedding and everything back to normal. But I failed to recognise the TSW symptoms that are haunting me.
- Difficulty in regulating body temperature (some moments feeling cold and the next, feeling hot)
- Messed up body clock (finding it a challenge to sleep at night and getting all tired during the day)
- Always tired compared to normal
- Red, burning skin
- Oozing skin
I do my best in continuing to live my life to the fullest as I refuse to be limited by my skin condition. That includes aerial, going to the gym and studying. I honestly hate seeing myself reduced to this state. Feeling helpless knowing that I have completely no control over my skin when it flakes, shed or ooze. Feeling terrible that I couldn't control the intolerable itch. Feeling guilty that I am breaking down when I have been through it before. Maybe tonight I have reached another of my breaking points. Or maybe it is the lack of sleep making me emotional. Many times I wished God made me normal. I wished He took away the pain from me. Even though I know God loves me just as I am, I can't stop being envious of other people with normal skin. It may be a bit far fetched but just a part of me wishes normal people knew what it is like to battle with eczema and TSW. Especially doctors who are prescribing this topical steroids without fully understanding the absolute side effects of it.
Only tonight, Marissa will be weak. Only tonight, Marissa will bare her soul. Only tonight, will I allow myself to cry for myself. Tears can only do so much. I trust that God is working and healing in the process. I'm not gonna lie that it is hard to trust when I'm in so much discomfort. But I believe God will turn this pain into something beautiful. I believe someone's life may be touched just by this sharing of my inadequacy.
In my weakness, He is strong. If you are reading this, please keep me in prayer. Your prayers are much appreciated.
God's love & blessings~
Xoxo
Marissa
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