It's been 3 week since I was discharged from the hospital. 

I've been getting messages asking for updates so I figured I would just continue here for those that want to follow me along in recovery.

Since my last update, I returned to work as planned and had a couple follow up appointments. 

My palm blisters were never painful (thankful!) but annoying. Since returning to work I realized that using the bleach wipes really helped with calming that down (intersting, eh?) Derm did recommend to soak them in bleach/water solution, but just wiping stuff down with bleach wipes did the trick!

However, I am going to lose my fingernails, which is a bummer. I am unsure if they will grow back or not, I am hopeful that they will. Right now they are peeling up from the cuticle forward. If I press on the tip of the end of my nail on any finger, it easily pulls up and you can see under the nailbed. The feeling of this is driving me nuts- women that get acrylic nails hear me, it's a gross feeling when your nail is secured like normal. All that's holding them at this point is the sides of the nail connect to the skin. Once that grows out each nail will fall off. This sucks. I have always had healthy nails and use them for many things throughout the day! It will be an adjustment to things I use my nails for, for sure (i.e.- picking off stickers, peeling or prying something open, typing, self defense, the list goes on!)

My eyes are still healing. I had an appointment today with a local Dr. that was amazing and educated in SJS/TEN. She noted that both my eyes and eyelids have scaring on them from SJS/TEN, which is normal in those circumstances. We are working on what eye drops work best and figure eye drops will be part of my daily routine for sometime into the future. She explained that scarring on the eye rubbing on the scarring on the eyelid causes more inflammation and irritation, along with my tear ducts still not producing as normal. This is what leads to the blurry vision and dryness. In the past 3 weeks I have noticed very slow progress of healing, but progress nonetheless!

Since getting diagnosed 8 years ago with Psoriasis and battling joint pain that I KNEW was Psoriatic Arthritis, I have been keeping detailed notes of my symptoms, appointments and Dr notes as it had been a LONG road and documenting everything is what helped with my PsA diagnosis (finally). SJS kind of followed right into that. Once I had time and could see better, I read through every Dr and nurses note from the moment I started taking Sulfasalzine and continues today. In doing so, I have found some correlations I wouldn't have thought of otherwise. 

I started taking Sulfasalazine @ 500mg 2X a day on 8/14. I had asked the rheumatologist that prescribed it to me if there were any side effects I should look for, as I do for any new drug. He stated that my pee would change color and we joked how I would be able to tell if I were dehydrated or not then. (that's all the side effects we went over!). He also sent a sheet of side effects to me through Mychart. The worst side effected listed on that sheet was  I would be more sensitive to the sun and not to take it if you're allergic. Yes, I asked, NO there is no test to take to see if you are allergic to any drugs! The only way to find out if you're allergic is to take it, see side effects and stop immediately.  On 8/16 I noted in my notes that I was having a PsA flare with my joints feeling like hot static, but I was cold. I noted I was far more sensitive to noise and had really bad brain fog. None of these would be out of the ordinary for PsA, however it was my body reacting to the new med and I had no idea.  2 days into taking this med without the education from my Dr that I needed, I was reacting but had no idea. I had pain ALL the time from PsA, this was the same in my mind. 

Not knowing I was reacting, I followed the directions for the Sulfasalazine and started taking double the original dose daily on 8/21. The next day I started noticing symptoms I had never had in my life before and new it was then correlated to the new drug. My eyes hurt, if I looked anywhere but forward it was painful and they felt strained. My lymph nodes were incredibly swollen, more than ever before, to the point I was losing sleep as it hurt to lay on them. 

8/24 I left work early as my symptoms progressed to my face and ears were red hot, literally. I messaged my Rheumatologist that same day: "I started the 2nd phase of my sulfasalazine prescription Monday the 21st, taking 2 of them now twice a day. Since starting that, I have been experiences some slight issues: My eyes hurt. They feel super strained to the point that in the mornings they feel "stiff" and hurt moving in any direction. Next is my lymph nodes - I have 2 on the back of my neck, 2 in my throat area and 1 behind my left ear that are super swollen and incredibly painful. To the point that I toss and turn all night due to the pain of laying on them. Iburprofen helps a little. Please advise on what your thoughts are and what I should do; continue 2 pills 2 x a day or?" 

The one and only response I received from this was: