Professional Guinea Pig

A couple months ago I got an email about a psoriasis study.  I was so excited!  A potential treatment for my psoriasis AND I’d get paid each time I went to the dermatologist?  Let’s go!

I didn’t know if I’d get the placebo ointment or the drug, which was a vitamin D derivative.  Things were going well at first.  Then a few weeks ago my skin started to really itch.  I mean, viciously itch.  I couldn’t stop scratching.  And my skin turned all red. My dermatologist told me I’d been given the drug, so at least we knew why it was happening. Then things got really bad for my poor arms.  The skin got really tight.  And started to crack and bleed. I couldn’t sleep at night for the pain. I decided to drop out of the study.  I went to my next appointment prepared to drop out.  My doctor saw me and said “Take her out of the study right now”.  There were only 2 more weeks of the study to go, but there were also only 2 more weeks before I’m to leave on a cruise with my family.  Here’s what I looked like 2 weeks ago.  No filter. photo My doctor prescribed me a cream and told me to come back the Monday after Christmas. Here’s what my left arm looks like now. photo 2 Less red.  No more pain, thank goodness.  But I still look awful.  I’m not looking forward to putting on short sleeves in less than a week!

I asked my doctor about getting the shot (Humira, etc) but he said even though my arms are covered I don’t have enough psoriasis all over my body for my insurance to cover the shots and they run about $15k each.  YIKES.   When I get back from the cruise we’ll explore more options.  I’m just hoping for some more fading up until Monday morning when I board the ship in short sleeves!  I can’t go to the Caribbean in long sleeves!  I’ll just keep telling myself I don’t know those people and have myself a grand time!

The heat must bring out the rude in people

I may be the only person in the Carolinas who’s not looking forward to Summer.  I sometimes wish we lived in Canada or Alaska so it would stay cool all year.  Mainly because I don’t like wearing shorter sleeves.  Not because of the sleeves themselves, but the people.  Recently I was out and about and ran into a woman I’ve met maybe 3 times.  I was wearing a shirt with 3/4 length sleeves.  Actually it was the Penelope shirt!  The woman looked at me and instead of the normal Hello greeting she said “Girl, what the hell is going on with your arms???”  I was mortified.  I have severe eczema and it really affects my forearms.  I don’t know why I don’t have it on places no one can see.  I’m used to people looking at me funny, esp at drive thrus or other places where I’m exchanging money for goods.  People look at my arms like I’ve been a victim of an acid attack.  And frankly, that is what it looks like.  During the winter (when I get to wear long sleeves, natch) my eczema is better.  When it starts to get warm out the heat flares it up and the patches look really red and angry.  But that DOES NOT give anyone the right to embarrass me like that!  And in front of people!  I would never look back at her and say anything like “Girl, what is UP with your hair?”

If you are unfamiliar with eczema and what it looks like, my arms look very similar to this: It’s not fun.  Luckily I have pretty good self esteem and a husband who thinks I’m beautiful even with my spots. Now, before you start listing all the “cures” for eczema, please know that while I appreciate it, I’ve heard – and tried- them all before.  I’ve been dealing with this for 20 years.  I’ve tried every bath, cream, pill, spray, balm that you could think of.  Bottom line is that there is no cure, only temporary remedies.   Just do me this favor- please teach your children to not stare.  That eczema and psoriasis and the like are not contagious.  That unwanted comments are just that- unwanted.  That the only license you could have to make comments would be a medical license.  And if you weren’t aware of this, now you know.  I really don’t want to go through another summer having to educate the ignorant in how to be polite.