Monday, June 24, 2013

Picking out the Fuzz & Not doing well...

A serious problem for us oozers...many of us cannot tolerate anything except 100% cotton.  We also wear long sleeves to cover the messy arms.  My problem is the new t-shirts I bought - they are 100% cotton but have small amounts of lint that like to imbed in my open areas and solidify with the dried ooze.  It is nasty and really bothers me for some reason.  I have to pick out the fuzz - causing the sore to open up and then put Vaseline over it - but once the Vaseline dissipates, the lint gathers back in. 

I guess I am just having one of those BAD days where EVERYTHING is bothering me!  I am still more functional that the first 3 months, but my skin is worse in many continues to spread on my legs and abdomen.  The blotchy areas are coming together to form large red areas.  My arms were like this in the very beginning and have stayed red and painful all these months.  I cannot imagine dealing with even more areas.  I know others have it so much worse - some have it on nearly 100% of their body for long periods of time.  It is hard to say what percentage is covered on me - my arms are red from shoulder to wrist - the entire arm!  My shoulders to my chest are becoming more blotchy - but still all red or pink - there are no clear areas of skin.  My breasts and abdomen have blotchy areas throughout.  I have the back of my neck to the back of my shoulders all red.  My flanks have large areas covered.  The remainder of my back (middle to low) are blotchy with small patches here and there.  My face is all covered.  My groin is blotchy as are my upper thighs.  The back of my knees are not solid red in huge circles - spreading up and down the backs of my legs.  The front of my knees and lower legs have a few sores.  My feet are completely clear.  My hands were clear but now 3 fingers have large areas, and it continues to spread.  My butt is now getting a few sores.  If I go by burn surface area percentage graphs (like I would for my job if a burn victim came in), I would be 50% burned.  That is giving only a small percentage to the blotchy areas. 

Again, I know so many others are worse off.  I guess my good days were such a change from previous good days, I was hoping I would get a big break.  This flare is just as bad and in many ways worse than the others.  My flares last for 3.5 weeks and then I get a 4-5 day break from the pain.  I guess because my face went from being dry all over to oozing and swelling, it just seems so much worse.  My arms went back to the skin ripping open with light rubbing pressure.  The bad ooze smell is back and making me nauseated.  My ring finger is 1/3 covered in dry crusty redness - looks like I might have to take off my ring until it gets better.  The spreading of it all is so depressing!  The difference from 2 days ago to today is huge!  I am cold all the time again - I was freezing at the grocery store today with my long sleeve shirt on.  People were looking at me weird because it was 90 degrees out today!  I keep reading others' blogs and reading at the point when they were at the 4-5 month mark.  I know I shouldn't compare - I wrote a post about this in the beginning.  But unfortunately it is a bad comparison - hoping to get to that 6 month mark when many get a big break.  If I don't get that break, I am afraid of where I will be mentally.  I say that now, but in a day or 2 I might be more upbeat regardless of where I am in this healing.  My emotions have definitely evened out in the past I said a day or so ago, I have not cried in a week or 2.  For the first 3 months I cried multiple times each week....about every 2-3 days at least.  I feel I am close to crying today.  I don't want to.  I don't want to return to that dark place in my head.  I just want to be able to ignore my skin, my pain, the smell, and what not and get on with my day.  But my days revolve around my skin still.  I HATE that! 

Sorry for the downer, but this is my story - my journey and I need to record it exactly as it is.  Not holding back on anything.  I can't.  I have to be able to help others get through this.  The reality is this SUCKS ROCKS!  It is depressing and debilitating.  But I will admit, it has made me a stronger person already.  It is even making me a better mom in many ways.  I look at what I have been able to accomplish going through this and I know I will be able to take on the world when this is all said and done! 

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