"You don't have severe pain" and Dupilumab Study

I went to go renew my medical Marianna license this week and that's what the "Doctor" said to me. He wouldn't look at my photos that I brought in and barley looked at me. I had to fight back tears. He had no problem taking my money and not refunding me though. I have had no problem receiving my card for eczema for the last 2 years, but this year I was denied. I was really upset until I received an important phone call that same day.

A representative from Regeneron called me and asked to set up an appointment for the Dupilumab study. I do have to have a clean system from THC so it actually worked out well. Just wish I was scammed $50 bucks for someone to belittle my condition. Hopefully I'll be able to update with some more study information as it comes through. This could be our Holy Gail for eczema...

Ingrown nails and Hairloss

As I lowered my steroid doses or when I was going though Topical Steroid Withdrawal I would lose my hair and get bad ingrown nails.At one point almost all my toes had ingrown nails. On each side, that's like 18ish... So even now, as I get ingrown nails I take it as a warning.

I mentioned this to my dermatologist and she took some blood to make sure there wasn't anything wrong with my thyroid. Surprise! There wasn't, I was however extremely deficient in vitamin D, so I'll be taking some high doses of Vitamin D for a few weeks, I'll try to get out into the sun more and increase my food intake that has that vitamin. I'm not a big fan of fish but I'm trying to eat more.

Oh by the way! That boil that popped up, (no pun intend) it was in fact MRSA again. So I'm on antibiotics to hopefully squish that before it becomes a problem. Here I am after 2 weeks of 50,000mg of vitamin D and a week or so of the antibiotics, I swear they're magic.

At least some days are better than others

Here I am on the 11th...

And here I am on the 13th. Still bad, but I'm grateful for days like this. I don't look like a monster. I'm still using the lotion mix that I was prescribed by Dr. Aron to keep my skin at bay but I feel like it's working less and less. That's steroids for ya...

Well I didn't expect it to get better....

But I certainly didn't expect for a boil thing to pop up. Looks like it's time to call for another Dermatology appointment....

And I'm back to using band-aid on my fingers. They just get so itchy!

Owie! I see you Spreading!

I woke up this morning like this. I see you spreading! Knock it off!

Update

Sorry for my absence, this was a busy month. We just moved and we're set to move again sometime in the next few months or so, so I'm living out of boxes at the moment. Not fun, and I didn't even have my desk or computer set up for a while. Still dealing with flares but nothing unmanageable.

Here's a picture I took after hearing of the death of Alan Rickman. I really loved his work and he was an amazing actor, I'm sad for his loss and all my fellow Slytherins will morn our house and headmaster.

My biggest issues have been my eyes. They're constantly swollen and or cracked. I try to take Zyrtec everyday but I don't think it helps much. I woke up the other day with an extremely swollen face. My living situation at the moment isn't the best so I think that along with other environmental allergies my skin is going crazy.

Sometimes My Eyes Hate Me...

So...I woke up like this the other day.

12/16/15

And then it got worse.

12/19/15

And then I got better.

12/22/15

Weaning of Lotion-Flares

 I found Dr. Aaron to be rather flaky. He stopped emailing me after I "seemed" clear, instead of sticking with me and monitoring my progress. Part of his program has you fill out a progress report after a certain amount of time in order to show your progress. He was rather pushy in reminding me to fill those out, but I had to ask him 3 times in one conversation on what my new dosing would be before I got an answer along the lines as "what ever feels best for your skin." He never emailed back. Now, this could be my # of consults were up? Or maybe because he had a HUGE wait list and had a lot of people he was trying to help. Either way, I left Dr. Aarons care with the same faith that I have in all dermatologists. 

While his regimen works, it's steroids. Of course it's going to work, but unlike other dermatologists he had a very low dosing, with an antibiotic and a lotion vs. the ointment smear that we are all regularly used to. I don't regret getting his magic formula, that didn't cure me but is a better option in the long run. I wouldn't, however, recommend him to others... per se...

But as for an update on my flares. I'm trying to wean myself off the lotion and add an extra day in between every application but since I've lowered my dose there's been some changes.

I've started getting ingrown nails again. Like four nails, all at the same time and couple of toes as well.

I've notices my hair falling out more then normal. I think this is because I've been lowering my lotion/steroid doses.

I ran out of zyrtec (20mg a day,) so my eyes have been giving me some trouble.

Thine Birthday Hast Come At Last!

This year was better then my last ones. 

 I got to fully enjoy this one. 

My husband and I went to a Japanese restaurant for lunch and it was wonderful!

He got Curry Ramen and I got Shio Ramen and since I've never had curry before I got a curry with pork cutlet. Of course I took a photo for you guys!

My eyes were bigger then my tummy! I couldn't finish either. But I found out that cold ramen is just as yummy. <3

Happy Halloween!

I wanted to be Sunako from the ring but didn't want to chance that much makeup and I'm a little short on funds trying to pay off my credit card.  So I grabbed an old outfit I had and brought my familiar for the day with me.

Last year, I made the last minute choice to be a mummy, only because I had that much gauze.

This year was better.

Be safe out there!

Btw. I've been learning Japanese for the past few month, so get ready for some Nihon!