Sunday, June 26, 2016

Returning Home


The trip was good and bad. We were only at the hot spring for about an hour before the ongoing construction had an accident and blew a circuit breaker. The whole town lost power, and we had to get out of the pool because they didn't have any lights No refund-$40 for an hour. Pretty BS. Luckily the hotel we were at was a little out of town and wasn't effected. But all the other major ones were.

I was happy to get away with him but a little bummed. Looks like we'll have to schedule another trip soon.

Member I said that the makeup would leave some damage? It did. :p My eye, lips and in general took a bit of damage. I haven't used the lotion in a while and I 'm gonna try to use it less to see how much the dupilumab is working.

Thursday, June 23, 2016

Special Day!!

It's my anniversary with my husband and we're gonna go up to Glenwood Springs again. We've been together almost a decade and I couldn't image my life without him. He's been there with me through sickness and health, through our debt struggles and more. He's the best thing that's ever happened to me and I'm happy I get to spend the rest of my life with him.

Here we are on our anniversary on our way up. I redid my hair and wore make-up. I know it'll do some damage but it's a special day!

Wednesday, June 22, 2016

2nd and Last Hospital Stay

YAY! I'm so glad I don't have to do this again. I hate sleeping in hospitals and I hate not being with my husband. Once again my meals were catered and i was given the cocktail drug and lots of poke to take my blood. My veins started bruising. Poor guys.

 Since my husband couldn't be there with me, he was here in spirit. Bug spirit.

Sunday, June 19, 2016

Lessesning Lotion and pic updates

Nothing huge or new to report just a few pics from June 17th-19th.

My sweetheart husband sent me flowers for our anniversary at work.

 The is my background for my phone, is my husband and I as Miitomo characters. The second photo is for my eye, I scratched it a little hard. This eye always has trouble watering and drying and cracking. 

This last one I don't look too bad, there is a filter on it I think but my eyes and face don't look as bad.

Tuesday, June 14, 2016

Still getting small flares....

I still continue to use the steroid lotion perscribed by Dr. Aron because I still get small flares, I still get huge hives randomly but I'm trying to use the medication less and less. I have my good days and bad days.

Here I am on May 21st and the 26th.

A giant hive while at work on the 29th. I only noticed it because it started itching like hell, hence the scratch mark.
 And here I am waiting for my next injection, as well as the marks I made while digging my nails into my hand because of the pain.

Tuesday, May 17, 2016

First Hospital Stay for Dupilumab

For this study there are certain times I have to withhold from certain foods as well as drugs, alcohol and tobacco. The foods are odd, no caffeine, no char-broiled meats, nothing from the mustard family, no chocolate and no fruit juices. I stay at their facilities for 3 days and take a cocktail drug that they will measure every hour or so by taking blood. This is the same drug that they had to see if I metabolized them well. One other gentleman who was also trying to get into the study couldn't metabolize the Warafarin so he couldn't do the study. Poor guy. A list of the drugs are:
Midazolam 2mg
Omeprazole 20mg
Warfarin 10mg
Caffeine 100 mg
Metoprolol Tartrate 100mg
(Sorry no photo of dupilumab, they always had it in a sealed box)

A representative came down from Regeneron to see the medication administered and I also received my first injection of Dupilumab. The injection was painful, very painful. I personally wouldn't describe as burning. It feels like something is being injected into my muscle and then it's spread down deeper. I literally grimaced and said "Ouch Ouch Owie Owie Owie" as they were giving it. But I'd do anything for a cure and compared to the pain I've been through this was nothing.

They had my meals catered and I spent most of my time watching anime. They would come in every few hours to pull blood to measure the cocktail. Here are a few pics, nothing special but yeah.

Sunday, May 15, 2016

Keeping a Secret-Warning Graphic Photos

So I've been having a few styes pop up on my eyes, which makes me nervous that I could have MRSA again. I also had a really bad boil on my head a few weeks ago. Nothing s serious since then but I don't want to tell the Dupilumab study for fear that I'll be kicked out.

The styes only happen when I cry and rub my eyes and stuff, so I've been trying to stay on top of that and I've upped my bleach bath to a couple nights a week, also using gentamiacin in my nose again.

This first photo was taken on May 3 after it popped. It feels MUCH better.
 These next photos were taken on the 15th before work, after I popped one on my eye and after the swelling went down. I had to put a hair band on my head to hold my eye lid up.

They're doing better just need to wait for them to completely heal and go away. PS I'm still losing my hair.

Tuesday, April 26, 2016

Pre-Screening Process

Today was my appointment, they went over paperwork and what they study was going to be. They took a bunch of blood and are going to make sure that I will be able to metabolize certain drugs well. If I can then I'm in. They also took a urine sample to make sure it's free of drugs and I'm not pregnant. They also did an EKG, which went fine, I have really good assistants helping me and I really like them. There are a bunch of weird criteria I have to adhere to in order to be in the study, but I don't care, I'll do it. Some examples are I can't be on hormonal birth control, and while in the study I can't have certain foods like caffeine and anything from the mustard family... Okay....Also no marijuana use while in the study, which is fine. I mostly used for my eczema anyway and if this study works I wont need it. :)

I'll have the results whether I'm accepted sometime next week. I'll keep you updated!

Lots of papers to sign...and this was an amazing pen!

Friday, April 22, 2016

Dupilumab uncanceled!!!

They called back the next day while I was at work and said they had misread the email they received from headquarters! When they said they weren't taking any more patients they were including the appointment they already had set! My appointment is on Tuesday now and I'll update that as it comes. Hopefully positive things are on the horizon!!

Thursday, April 21, 2016

The Dupilumab Study called and canceled..

They said the main headquarters called them and closed the study saying they had enough participants, they were only accepting 18 people. I feel so...empty. My hope was stolen from me... I cried so much today... The sadness is overwhelming... This was my last chance for this study. They were already finished with trial and this was the last one before it hits the market...and there's rumors that the treatment will cost up to $22,000 and we know my insurance won't cover it.