False Alarm

My skin is doing much better since Friday.  In fact, my skin started to improve the next day after my previous post.  I was really worried I was entering another major flare, but seems it was just a minor one.  I've noticed a significant turn around in my skin the past few days and I pray it continues from here.  This may be the best my skin has been since June?  Not sure.  I am feeling much better though and I'm loving it.

Timing was perfect too since Saturday I had a Court of Honor ceremony to attend for my younger brother.  He became an Eagle Scout!  I was sad thinking I would be miserable there and even worried I would not be able to attend.  However, things worked out pretty well.  I felt pretty decent during the event.  Also, I must have looked okay, since no one said anything about my skin.  In fact, I got compliments on my hair and was told I was "looking good."  Success!   I did wear a blazer, tights with my dress, and a scarf to cover up as much as possible.  Strategic fashion.

Here I am Saturday with my brother:

My grandparents were visiting this past week from Puerto Rico so I've been out and about, keeping busy.  They came last Wednesday.  I wasn't feeling too good the first couple days, but thankfully that changed.  I don't see them very often so I'm glad I was able to feel well enough to enjoy their company.

Photo from Tuesday, outside in the sun so you can see more accurately skin color and texture:

I have plenty more photos and quiet a few post topics in mind to work on so stay tuned.  I hope you all are healing and feeling better.  For those that may not be doing so well, my thoughts go out to you.   I know your pain....  Please stay strong and have faith.  It will pass!

google imgs

Could it be? Flare three?

Woe is me.

The past couple weeks I've noticed an increased amount of TSW activity.  I think I may possibly be heading towards major flare número tres.  I'm really hoping I'm wrong and it's just a minor flare.  Only time will tell.  If it must be a major, I just pray to dear God it's not as bad as flare two.  I don't ever want to have to go through such torment again.  It took so much out of me.

Current condition:

• Rough, bumpy skin texture
• Dry, flaking
• Increase in redness
• Weeping upon scratching*
• Minor swelling in legs*
• Still intensely itchy always
• Still no energy
• Still sleeping horribly
• Still losing hair

*signs that make me believe I'm heading towards a big flare (⌣_⌣”).

Here are some photos from Monday night.  The last one is from today.

One Year Later {photos}

One year off steroids

Well, here we are... One year off steroids (for the second time) as of October 1st.  Honestly, I thought things would be entirely different than they are... but hey, what is one to do?  Things aren't horrible, but they aren't good either.  Every day is still filled with struggles and uncertainty related to my skin.  I try hard to keep my head up, but it's difficult watching time race by as I sit on the sidelines.  It fills me to the brim with anger and sadness.  The cruel injustice imparted on myself and others still gets to me one year later.

I turned 25 about two weeks ago.  I never would have imagined my life would be as it at this age... living at home with my parents, unemployed and completely dependent on them for nearly everything.  My younger self imagined myself to be independent and established by now.  Looks like it will be a while before that is my reality.  It's like I've taken an indefinite hiatus on life; except instead of a relaxing vacation, it's a torture chamber within one's own body.  Sorry for the negativity.  I know this is temporary, but it doesn't mean I don't have the right to be unhappy about it.  It's my party hell ride and I'll cry (and bitch) if I want to.  '(^.^)' 

Anyways, things are rather stagnant skin-wise.  My condition fluctuates throughout the day and day-to-day, but there are no drastic changes taking place.

Current condition:

• Skin is intensely itchy nearly ALL. DAY. LONG.
• Sleep is broken and all over the place.  I usually sleep in the late afternoons for a few hours and about 1-3 hours at night, usually waking up around 2, 3 or 4AM.  It's very difficult to function with this routine.
• I'm constantly exhausted and lethargic.  Energy is nearly non-existent except for around 4-9AM.
• Erratic moods due to lack of proper sleep, anxiety and stress of TSW.
• Hair loss.  I still lose a lot of hair on my scalp.  Thankfully I have naturally thick hair so it's not obvious, especially to those who don't know me.  However, I know it's happening as I see it all around me (literally).  My hair feels as if it's lost about 1/3-1/2 of its former volume.  
• Hands and feet.  My hands are probably the most troublesome area as of late.  They are always SO ITCHY. Recently, I have been experiencing joint inflammation on my hands and feet. [Cause you know, skin inflammation just wasn't enough...].  Last week my thumb was swollen at the joint (see picture below).  It lasted a little over a week, but has mostly gone down.  Now the joints of my middle finger are inflamed, along with various other joints along my fingers and feet. My right ankle also has some weird things going on with what I assume are my joints as well.  I've experienced these things to a lesser degree before TSW so I don't know if this is part of the withdrawal process or early signs of arthritis.  Either way, I blame the steroids. 
• Neck and back of knees.  Along with my hands and feet, these are my worse areas.  They are often intensely itchy and have deep creases, discoloration and redness.
• Elephant skin.  Still happening on elbows, hands, knees and ankles.  If there's anything about withdrawal it's how sexy one feels throughout it. ;P
• Night sweats and odd temperature regulation.  Besides the terrible itch and messed up adrenal glands, another reason I wake up often is from night sweats.  I often become overheated  during sleep.  Sometimes I wake up drenched in sweat and have to change my shirt and air myself off.  Luckily this seems to be lessening in severity.  During the day, I sometimes find myself becoming overheated for no apparent reason.  I think it's a good sign of healing. My sweat glands are trying to finally get back in action.  Also, I'll take being a bit sweaty and overheated over convulsing with constant down-to-the-bone chills any day. 
• Lymph nodes.  The lymph nodes located around my pelvic are still swollen.  They may have gone down in size somewhat, but if so not by much.  I think they'll be swollen until the itching and scratching stops as they are likely continually fighting off threats of infection.
• Nerve pain.  My nerve pain has decreased drastically.  Thank God!  That was a horrifying symptom to say the least.  I pray it's not something I have to deal with much in the future, if at all.
• Insatiable hunger.  Does anyone else have this too?  I don't know if it's part of the withdrawal or just me, but I'm ALWAYS hungry.  I eat pretty much all day long.  Maybe I'm just trying to fill the void of not having a normal life?  Whatever it is, I hope it stops soon.  I don't want to be a fatty once I'm healed. 

Now without further ado... this month's photos:

September 15-16

Eyebrows growing in weirdly

September 20 [my birthday]

Compare to previous photo update to see major difference in size.

September 22

Deep creases and hyper pigmention.  I worry if this will go away after this is over.

Stubborn nail paint on my toe!
 I haven't painted my nails since June.  I won't dare use nail polish remover... eek!

Swollen joint

October 1st

A small semblance of normality

Today

Ankle after doing some scratching... tsk! 

Wrist

Palms and bottoms of my feet are itchy itchy ITCHY!

Until next time! ✌(✿◠‿◠)