Update: Things are bad.....really bad.

My few weeks of wonderfulness turned into breaking out here and there - nothing horrible at all.  Wednesday I called work and signed up to work this week Wed.  I thought I had a little pain and a lot of dry skin, but it was manageable.  Plus my energy levels had soared!  Come Thursday I went downhill - my lower legs had that super thin skin that breaks apart with even a minor touch.  A scratch would give me a wide deep fissure.  It was extremely painful.  I couldn't use my comb or massager to scratch as they broke my skin up just as bad.

We were planning to go away for the weekend to see family.  By Friday I was ready to cancel the trip.  A 4 hour car drive (one way) was looking like a bad idea given we were driving separately due to having to get things out of storage.  Well I decided not to break the plans - we were planning a one night stay at a hotel - my kids were ecstatic about going swimming and seeing family.  They have already had a boring summer due to me not being able to take them anywhere.  So off we went....

We had a great time, but I over did it.  I ended up taking my husband's grandmother to the casino.  Her health has been slowly going downhill and the casino was one place she enjoyed.  Last time she went was a year ago.  Thing was it was another 1.5 hours away.  And she loves to go early.  Like 5 am early.  We agreed on 7 am but I had a hard time sleeping and ended up picking her up at 6.  We had a great time and she was so excited to have gone out for the day.  But we had to drive home later that day.  Total of 7 hours of driving yesterday on 4 hours of sleep.  I was a bit tired when we made it home.

Now my skin is even worse....the super thin, break open skin has spread to my low back, arms, abdomen, chest, neck, and face.  Yep, it's back on the front of my neck - raw and oozing.  My legs were so bad I have wrapped them daily for the last 5 days - the vaseline dries up so fast and then the ooze sticks to the gauze - causing a lot of pain taking off the gauze.  Last night upon returning home I went right in the tub and allowed the water to soften the ooze so the gauze came off pain free.

Moving around is very painful.  If I put vaseline on, I can move for a few hours, but then I get that intense itching within 1-2 hours - I can't stand it.  So I stopped with the vaseline for now as I was just tearing my skin up even more.  I did run out of my emu oil, but my new shipment came in this morning.  I used the last of my bottle last night to spray on gauze to make it slightly damp and then wrapped the gauze on my lower legs.  This morning my legs felt so much better!  So I was excited to get more!!!  I now have my lower legs wrapped and my left arm.  Hopefully tonight those areas will be feeling better.  Good news is the emu oil does not make my skin itch.  But it doesn't help with bending at the creases of my joints.

I would think that at 6 months, my flaring wouldn't be as bad as it was in the beginning.  But it almost feels worse.  It is so widespread!  Getting out of the tub is more painful than the salt water stinging.  For some reason I am back to the air burning my skin getting out of the tub.  Forget taking a shower - that is now out for now.

I wish I had better news - especially for those just starting out.  I hate to be a downer, but I promised to be completely honest and not sugar coat anything.  I have to say though that if life is going to be similar or better to what I experienced during my 2 week break from flaring, then life is going to be FABULOUS!  I am glad that I got that break - it is helping me now through these really rough time.  I dream about all the things I am going to be able to do with all that energy!!  And to do things with so little pain!  Oh the wonder of it all!  I may have 6 more months of this or maybe 2 more years, but I know it will end and that carries me forth putting one foot in front of the other.