Saturday, December 29, 2012

Week Two: It Gets Worse

 So far the red splotches on my shoulders, neck, and face have slowly spread into one giant red area. It has also become progressively brighter red and raw.

12.19.12 Day 11: Woke up with EXTREMELY swollen eyes and face. Face, neck, chest, and shoulders are very red (looks like a terrible sunburn). I am definitely a fan of the pure shea butter. If you rub it between your hands first, it goes on like butter with very little rubbing in needed, which is nice when your skin feels like it has gone through a meat grinder. I had my first bout of oozing today from my shoulders, neck, and back of ears. I woke up from a nap to find the shoulders of my t-shirt were

The swelling in my eyes this morning
I went to see the Physician's Assistant today for a well woman visit, which she refused to do because she said I "was not well" and that we needed to "address the elephant in the room first". This is pretty much how it went:

PA: What is going on with your skin? You look miserable.
Me: I am miserable. I became addicted to topical steroids prescribed for eczema, they stopped working, and now I am going through the withdrawal.
PA: (totally disregarding that steroid withdrawal could be an option) Why did you stop taking steroids? What were you unhappy with?How would you feel about a steroid injection to get rid of this?
Me: (already frustrated because I have had trouble with her not listening in the past) NO STEROIDS. I am raw, oozy, uncomfortable, and sleep deprived because of the steroids. Don't you think that this could be happening because my body is healing from all of the damage the steroids did to me? It started right after stopping the steroids.
PA: No, you are obviously just having a horrible allergic reaction. Have you done allergy testing?
Me: Yes, I am not allergic to any food, I only have seasonal allergies.
PA: Oh...ok well I am going to test you for strep throat and do some blood work to see if you have valley fever. In the mean time take some antihistamines.

So my trip to the doctor was basically worthless, cost me $15, and I still have to go back for my well woman.

12.20.12 Day 12: Much less swelling today. My face is getting dry again, so is the back of my neck, but only a little dryer on my shoulders. The skin on my back is feeling painful and I have to be careful with scratching because the skin breaks VERY easily. I am feeling very tired. Mornings are slow going, I wake up tight, dry and uncomfortable and need to get immediately into the bath. I then take forever to lotion up, wait for it to soak in a little, then get dressed. At this point I am tired again. I also take a few more baths or showers during the day when I get uncomfortable. Needless to say, I'm not getting much done these days.

12.21.12 Day 13: Woke up at 3:30/4am feeling miserable. Realized that sleep was not going to be an option so I watched a movie and laid back down until I absolutely had to get up for work at 11:45. I am tired of being tired and unproductive. Felt a little light headed and nauseous getting out of the shower this morning, but I think it is just form the anti depressant from yesterday and my empty stomach. Face looked good this morning but became much redder and hotter throughout the day. Swelling was a million times better than yesterday. Back of neck and ears are oozy and shoulders feel raw. I was unable to wear a bra today because the straps hurt.

Rash has spread to one full area
Stomach is covered in red dots

12.22.12 Day 14: Today was Ethan's birthday so I needed to go out. Overall I felt pretty good, I just had to get straight back into the bath when we got home from dinner and again after the bar. I have been taking a lot of extra time to do my hair these days in an attempt to make it look like I do take care of myself. Luckily when we went out to the bars the only skin showing just looked like an awful sunburn. I also carried a tub of lotion in my purse to reapply throughout the night. 

Feeling very raw
Song I can relate to this week: 
"He sits in his basement from midnight 'til four painting pictures that nobody sees from his days in the war. The canvas is painted bright red, red. He heats up the shower, he paces the hall. He'll scrub for an hour or more but he won't get it all...The hill still left to climb is just so high, and I'm so tired. Come on look me in my bloodshot eyes, the clouds are all on fire." Jack's Mannequin - Bloodshot

Sunday, December 23, 2012

Week One: Welcome to TSW

It has finally been a week. Here is what has happened so far:

Day 1: blissfully unaware of what was about to happen. All I cared about was being cured from this awful embarrassing rash and figured that my withdrawal process wouldn't be so bad. 

Day 2: Woke up to bright red splotches on my shoulders, chest, neck, and face. Under eyes were also swollen. Main issue was itchy eyes. Started using Benadryl to sleep through the itch.

Day 3: Things start to get a little sucky.  Woke up to the same splotches (not too itchy but feel very raw), eyes are now swollen on top and bottom along with the rest of my face, and there are now little red bumps that span from my chest to my upper thighs. Also lots of eye goop. Purchased a hot/cold ice pack to help the itch. Had to take a Benadryl before bed and again 2am in order to sleep. Switched from eucerin cream to shea butter.

Day 4: Things are the same. It has only been a few days of itching and discomfort but it feels like forever.

Day 5: No change in symptoms. I Read a blog today that mentioned that their first flair lasted four months. FOUR FREAKING MONTHS! This did not help the pitty party. I obviously have not done enough research.

Day 6: Went out today, luckily it's winter and I can cover up most of the red areas. Feeling less raw and more dry and itchy today.

Day 7: Much more optimistic. I slept through the night without benadryl and not on my back. Splotches are much dryer and less raw which I prefer. Face is visibly dry and flaky which looks gross but nothing a little moisturizer can't fix. Keeping in mind that God would not have given me this challenge if I couldn't handle it.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed renewed day by day 2Corinthians4:16

The Begining

 At almost 22 years old, I have had eczema for, just about forever.

I came across the International Topical Steroid Addiction Network (ITSAN) by accident. I was originally searching for a new way to treat my eczema that had now spread all over my body and would not go away with twice a day steroid creams.

From the front page of the ITSAN website:
If you are at the end of your options for a cure, read on:

  • Have you been struggling with eczema that has spread and is "untreatable"?
  • When you reduce or stop your topical steroids does your skin flare, burn and or turn red?
  • Have you been using more and more corticosteroids to control your eczema?
This is where the light bulb went off and I decided to quit using topical steroids then and there.

Day 1 December 9, 2012.