Living with Psoriasis...
O' Fine white dust
Where doth thou cometh from?
Each day to find you I must
The white dust from a scratching storm...
Yes.. each day living with Psoriasis means.. there's dust on the floor.
What is Psoriasis you may ask.. you can read it if you google or wiki it..
http://en.wikipedia.org/wiki/Psoriasis
In short.. it's
a. Chronic
b. Genetic
c. Incurable (for now)
d. Unsightly
e. Not Infectious
f. Irritating
g. Depressing
h. skin grows at an alarming rate of every 3days.. hence the many different red & white patches on the skin.
i. known to lead to arthritis
Need I say more...
Each day, Psoriasis patients/sufferers/victims have to deal with stares and ugly looks from passersby.
To people who know you, think they have a cure for you even before understanding what Psoriasis is...
I've been living with Psoriasis for the past 8years. I unknowingly had it for 2 years. The skin doctor I saw for my corns suspected but didn't say much or didn't perform a biopsy for the skin back then. She asked if I was stressed.. I said.. No..
Sometimes you don't know if you're stressed.
About 6 years ago I was properly diagnosed and it was only localised on my legs.
In the 2 years, stress has increased because of a job situation that I did not ask for.. it's been a major fight .. it feels like I'm losing the battle.
Each day I go through a cycle of emotional ups and downs.. starting in the morning when I find, dust on the bed, dust on the floor, sometimes blood stains on the bedsheet and skin from involuntary scratching at night.
Then to the bathroom to apply soap, you feel every bump of skin that threatens to turn into a psoriasis lesion.
Then throughout the day depending on time of day and environment, it can get itchy, and people asking questions or giving odd looks or stares.
Then in the evening, when exercising, again the stares and looks.
Then at night, during bath time, again when applying soap, you get to feel every growing bump or new bump that appears.
We have tried various types of medication, but the battle is tough.. even very expensive new medication seems to work only for a while, now it seems that the psoriasis is back with a vengeance.
The Psoriasis has now spread to my arms and my back.. and beginning to appear on my torso.
My emotional ups and downs don't go well with ppl, because I'm tired of answering, but does it put them off as well.. that I don't talk to them and they don't talk to me? Am I pushing them away from me? I feel sorry that they are at the receiving end of my emotional state..
It is emotionally draining.
It seems easy to say "Trust God" .... and I do trust Him.. but what do I do in the meantime?
The word for me for my condition is "Unexpected" .. and how to not expect when everyone around you expects things to happen... how do I see God and only God when everyone seems to be shouting different things.
I'm honestly tired.. wish I could just rest..
I pray each night.. I surrender each night.. I hope.. I pray .. I want God to be glorified and victorious. .
Until I come to a point of nothingness.. then God can be everything.. have I reached that part in my life?
*may add more to the blog later*... thank you for reading my rantings
Where doth thou cometh from?
Each day to find you I must
The white dust from a scratching storm...
Yes.. each day living with Psoriasis means.. there's dust on the floor.
What is Psoriasis you may ask.. you can read it if you google or wiki it..
http://en.wikipedia.org/wiki/Psoriasis
In short.. it's
a. Chronic
b. Genetic
c. Incurable (for now)
d. Unsightly
e. Not Infectious
f. Irritating
g. Depressing
h. skin grows at an alarming rate of every 3days.. hence the many different red & white patches on the skin.
i. known to lead to arthritis
Need I say more...
Each day, Psoriasis patients/sufferers/victims have to deal with stares and ugly looks from passersby.
To people who know you, think they have a cure for you even before understanding what Psoriasis is...
I've been living with Psoriasis for the past 8years. I unknowingly had it for 2 years. The skin doctor I saw for my corns suspected but didn't say much or didn't perform a biopsy for the skin back then. She asked if I was stressed.. I said.. No..
Sometimes you don't know if you're stressed.
About 6 years ago I was properly diagnosed and it was only localised on my legs.
In the 2 years, stress has increased because of a job situation that I did not ask for.. it's been a major fight .. it feels like I'm losing the battle.
Each day I go through a cycle of emotional ups and downs.. starting in the morning when I find, dust on the bed, dust on the floor, sometimes blood stains on the bedsheet and skin from involuntary scratching at night.
Then to the bathroom to apply soap, you feel every bump of skin that threatens to turn into a psoriasis lesion.
Then throughout the day depending on time of day and environment, it can get itchy, and people asking questions or giving odd looks or stares.
Then in the evening, when exercising, again the stares and looks.
Then at night, during bath time, again when applying soap, you get to feel every growing bump or new bump that appears.
We have tried various types of medication, but the battle is tough.. even very expensive new medication seems to work only for a while, now it seems that the psoriasis is back with a vengeance.
The Psoriasis has now spread to my arms and my back.. and beginning to appear on my torso.
My emotional ups and downs don't go well with ppl, because I'm tired of answering, but does it put them off as well.. that I don't talk to them and they don't talk to me? Am I pushing them away from me? I feel sorry that they are at the receiving end of my emotional state..
It is emotionally draining.
It seems easy to say "Trust God" .... and I do trust Him.. but what do I do in the meantime?
The word for me for my condition is "Unexpected" .. and how to not expect when everyone around you expects things to happen... how do I see God and only God when everyone seems to be shouting different things.
I'm honestly tired.. wish I could just rest..
I pray each night.. I surrender each night.. I hope.. I pray .. I want God to be glorified and victorious. .
Until I come to a point of nothingness.. then God can be everything.. have I reached that part in my life?
*may add more to the blog later*... thank you for reading my rantings
Labels: A matter of Fact, Faith, Serious Stuff
2 Comments:
At March 07, 2011 6:00 PM, Anonymous said…
Pauli, we are in the same boat, my advise....put a smile on and get on with life, always remember there are people worst off than us with other medical conditions. If you are embarrassed, cover yourself. Like me, I have never worn shorts for the past 12 years. HAVE FAITH IN GOD, ONE DAY A MIRACLE WILL HAPPEN! MEANWHILE IGNORANCE IS BLISS.
At January 13, 2014 11:11 AM, PaulOS said…
Just to update.. it's been nearly 3 years since this rant/post.. Am now a father of a daughter, running my own biz and psoriasis is under control. It pops up now and then.. but thank God with meds it's under control.
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