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!

Sorry for my Absence / Rant Post

Scrolling through my blog is painful, sometimes I can't believe it's me.
Did that really happen? Wow! Was it really that bad?
I'm not saying I forgot about all the sleepless nights, or spending hours getting ready just to got to the store. I haven't forgot that the back of my knees were so bad that I couldn't walk and limped everywhere. I haven't forgot THE BOILS. I still consistently check my skin thinking that there's just going to be one on my legs.

I did forgot about all the things I could/did do before going through Topical Steroid Withdrawal.
Like wearing whatever I want and not the same jacket over and over again because it was the only one that hurt me. I forgot how I wore makeup. I forgot what it was like to smile without having to worry about my lip splitting.
I almost forgot who I was.

I was so scared of losing myself from TSW but I can slowly see myself coming back. But there are something that are going to take longer. I don't think my hair will ever recover its original thickness. It's something I've come to term with, I'm thankful I have any at all. Also I have anxiety speaking and looking at people. It's something I avoided heavily for the first two years, but now that I can I find I stutter and jumble my words. This had never been an issue before TSW.

Topical Steroid Withdrawal is serious stuff. There are still many who don't believe in it and there are others who are already giving the condition a bad name. This is the best condition my skin has been in since 2000. Lichen Planus, Psoriasis, Eczema, MRSA, and Topical Steroid Withdrawal. I've been sick all of my 20's. Those are supposed to be my prime years, and here I am, dying. I'm happy others are realizing this, but sad so many people are going through this.

Also I'm disgusted at those who try to make a buck of this, or anyone who tries to glamorize this. I'm not targeting anyone or trying point blame at any websites but I'm starting to see this more often. I don't think it's okay having a blog, having followers, talking about this disease like it's the fad and trying to pitch "What make up is the best for covering up TSW? Check out my blog for more!"
You shouldn't be putting make up on your messed up skin in the first place! I don't like that you post pictures of yourself with a pouty face and full on make up and bandages around your neck. #Topical steroidwithdrawal. There's nothing wrong with a lil eyeliner or lip-gloss every once in a while when your feeling down. But when that's your whole gimmick.... Shame on you.

I do have MAD RESPECT for those who try to go deeper and learn why this is happening. The men and women who make these giant posts with all those silly pictures and graphs, I read them. I admire their strength in being some of the first, they had less guidance than us. I know many of these guys are veterans but these are the people you should be following. Those who may even healed and are still fighting with us.

3 Year Anniversary-Sorta

I am writing this blog on what would've been my 3 year anniversary of Topical Steroid Withdrawal. But I had a bit of a detour to take. With the MRSA threatening my life I had no choice but to use steroids. I fought MRSA for over 6 months and accumulated over $5000 in debt because of my health. And last week I received ANOTHER BILL for $225. That's a whole other story though. But after I finished my treatment my eczema started coming back, just as angry as last time. SO I have been Under Dr. Aarons treat for a few months now and things are gonig great, as expected. I'm just worried what will happen when I stop using it all together. I've gone down from 5 applications to 2 applications per day.

Small issues: I will get random hives sometimes throughput the day, I only end up noticing them because they start itching like crazy. One morning I woke up with quite a large one on the back of my leg. As I lowered my doses I started losing my hair again. I told this to Dr. Aaron and he advised me it may be something with my thyroid..... Anyway, here's a few updates!

Dr. Aron Richard-2 Weeks

I'm just finishing up my 2nd week of his treatment and things are still going great.

I have a small patch on my palm that bothers me here and there but other wise things are great.

LOOK AT THOSE FEET!

 

I get the occasional stinger but other then that I'm itch free. I sleep through the night now and I don't tear myself to pieces.

I think this is going to be the way to send this into remission. 

I need to work on eating better again.

I got Sunburned...

I've been on Dr. Arons treatment for a week now and things have been going well.

Except I was a bit silly and got sunburned. XD

Starting a New Treatment

I'm out of options again and I can't go through that pain and depression anymore. 

All though Topical Steroid Withdrawal I looked into treatments.

What can I do to speed this along? 

What can I do to have less pain, less flares?

Autoimmune Paleo? Tried, but broke after a week.

Rejuvenation Centers? Too expensive, especially after the MRSA treatment.

Moisturizer Withdrawal? Which I tried.

But there was one treatment I considered but never tried. 

Dr. Aron Richard -Eczema and TSW Treatment.

He uses a low dose of moisterizer/antibiotic/STEROID.

Yes, I know. But he slowly weans you off it.

He's has quite a long wait list for a consultation but he will prescribe and monitor your progress. 

Visit his website for more info.

I will update when I can.

Hope you're all doing well.

Slowly Coming Back- I Can't Go through TSW Again.

This is heart breaking. I was hoping t tell you all that this did it. That I was all healed and I wouldn't be writing in this anymore.

I believe the MRSA is gone, or at the very least on its way out but I watch as the TSW or steroid induced eczema starts coming back.

After a couple weeks of being normal and pain free, I could immediately tell when it started to come back. I thought I could handle going through Topical Steroid Withdrawal again, now being more knowledgeable and know how to handle it.


But I was wrong. As I slowly watched it come back I started to break. My hands started splitting again, the cut above my lip that I fought for all my withdrawal came back. I CAN'T DO THIS.

And that's when a small boil popped up on my back. That's when I realized I don't even have the option to do this.

I Started a GoFundME

Drowning in mass of medical bills and I could use any help. My health insurance refuses to help pay for my medications. And all these trips back and forth and all these copays...

GoFundMe

Thanks for following me this long.

I'll update when I can.

<3

Hope everyone is doing well.

Last Treatment-Hopefully

The last treatment didn't go as smoothly as the others. Much more painful this time around. Short version...she hit a nerve and then blew  vein. Since she did that she had to do the other arm, which then EXPLODED with blood. Took her half a box of gauze and six alcohol pads to clean it up. I don't usually document this type of stuff...but this was after she cleaned it up...

 Feeling pretty with my new hair! Some new makeup (haven't worn makeup in years)

And representing my house! <3

I had a follow up with the disease specialist a few days after the last treatment, where I told her I had 3 boils pop up. All small, and with the last treatment none of them formed heads, they just went down. All she said was to call her if I had any more problems and didn't really address what we would do if it do come back.

Not as bad as other...but still..

I better not see anymore. I'm working on having a more Auto Immune Protocol Diet. But it's very expensive to eat like that, and I hate fish....But I gotta do everything I can do heal my body from all the damage.

Forgiving Myself and Feeling Alive Again

I can't begin to describe how this feels. I feel so happy for this, but I'm scared. Already scared for a new withdrawal. I have PTSD from this. The husband is trying to help me feel pretty again and not to beat myself up. I cried while putting on the steroid, I've had nightmares and yet here they are.. saving me. I've written in my blog before on how I felt like I was losing who I am, losing myself. Like TSW was stealing my happy bubbly personality, it was robbing me of everything.

When that time comes I'll have better knowledge on what to do/what not to do. But for now....

Here's me..

The real me.

 

 

 He's my world, my best friend, my other half, my everything.

A couple months before TSW

Our anniversary. 6/23/14

Our anniversary 6/23/15

The MRSA is Strong with This One

So here I am, a week after 2 treatments and a little under two weeks use of clobetosol, I have already started to ween off it. 

Things are looking good but I still have some boils popping up. 

The disease specialist wants to do another round of antibiotics, but once again we have to fight my insurance. The insurance won't let me use the Dalvance again because they won't "cover" it since I already used it. She said if I were to get another treatment of the Dalvance it would be $5000 per treatment. The doctor suggested a different oral antibiotic called Zyvox but mentioned that it was costly.

I had to go physically pick up the perscription because the nurse had included a coupon with it and said "This will help a lot, you'll pay next to nothing." NOT THE CASE!!! After taking it to a pharmacy they tell me since my insurance wouldn't cover it it was going to be $3800 for 28 pills!!!!! AND THAT WAS WITH THE COUPON!!! I literally gasped and covered my mouth to which the pharmacist said "Yeah I realize that's a bit of a shock, I recommend you call your insurance and see if they'll approve of it."

After calling my insurance and asking them to approve it because it was the only option I had left they tried to push Clindamycin, to which I told him I was already resistant to. I told him I was out of money and my life was on the line. He then said there was a third party drug company I could call and see if they would approve me. When I called the third party company I was having trouble remembering the name of the new oral antibiotic, I told her I couldn't remember the name and she got very catty with me and said they don't cover most antibiotics anyway. 

I got off the phone and just cried. Why won't anyone help me? I just want to be healthy. Is that so much to ask? Apparently so. 

I called the disease specialist voice shaking and left a message "Thank you for your help but I can't pay for any other treatments." 

She then called back and said that they could do two treatments of the Dalvnace for $2932.40 but it had to be given TODAY because it's on a schedule and I have to pay before I can recieve them. 

ARE YOU FUCKING KIDDING ME!?!?

Where did this new magical number come from!?! How was $5000 per treatment before? Who was planning on pocketing that extra money?

So four treatments...$5117.20 on my husbands now maxed out credit card. This is how health insurance works?  They barely paid for anything! This is a life threatening infection, I couldn't imagine if I had cancer or a serious surgery. But seriously what do I do if these next treatments don't work. I really have no money. I even looked at stuff like gofundme but it's just not the type of person I am.

I just don't want to be sick anymore.