Guest Post: Jen's Story

My name is Jen and I live in Georgia, USA. I am 41 years old.  My background is that I had horrible hay fever as a child. I had no skin issues until my early twenties. They were on and off for years. Nothing was really bad until my late 30’s when I started having issues around my eyes. Like most here I started steroids and it got bad quickly. Before long I was on Triamcinolone and then oral steroids. December 2011 I went to a top Derm in Atlanta who wanted to start me on high dose orals and then methotrexate. Thank God I found Kelley Palace and ITSAN after a month of oral steroids and taking only one methotrexate pill and I knew I had found my answer. Not a hundred percent sure but I think my accumulative steroid use is probably 5-6 years. I printed and highlighted all the papers from Dr. Rap and thankfully my husband and Mom were on board.

I started withdrawal on January 13, 2012. Now that we are at the year mark I am having memories already of a year ago of what was going on. Already thinking ahead to Super Bowl Sunday which was HELL! It was a pretty bad year. I have never experienced anything like it. EVER! Thank God for the support of my family and friends.

The first few weeks I thought it was the food and I was super scared to eat anything. I went to a naturopath who did a ton of tests that cost me over $1000. She promised I would be perfect in two weeks. I went back several times with my red face and red and swollen body and she thought I was cheating on her diet which I was not. I knew deep down it was TSW and finally quit her.

I could write a book about my afflictions but do not want to bore everyone. I wrote in a journal for the bad months. I am not a journal writer but someone on the forum encouraged doing so and I am glad I did. On day 52 I wrote, “When I ooze I have not energy at all. It is so painful and I am cold and shiver. On the no ooze days I am so itchy and constantly shedding and do not sleep. The past two nights have been so frustrating as I cannot stop scratching until after 4 AM. No sleep meds help.” This is one of many maddening entries. I tried so many sleep aids and nothing helped. I finally accepted I would be awake until about dawn. For many months I would get my kids to school and come home and sleep until about time to pick them up. A few days later I wrote, “My body feels like I have zillions for tiny bugs crawling all over and I am in a briar patch. It hurts to move and even driving is painful as it hurts to turn my head. My face is red and blotchy and has sores all over.” I can remember being in the grocery store and not being able to turn my head and almost ran into a man with a cart and he was so ugly to me. I wanted to cry because I was doing the best I could and did not want to even be there. It has made me more aware that you never know what others are going on with someone else and to try and be more patient.

I could go on and on with entries from the journal but I think that shows a bit how bad it was.

My baths were my favorite place!!! It was the only place I felt good. But then I dreaded getting out because it was awful to get out. So I had to decide whether a bit of pleasure was worth the many minutes of pain. I also loved being under heavy covers and my mornings in bed were the best. I dreaded sun down because it meant the start of the crazy itch. I could not wear black because of the shed, but light colors were a pain because of the blood. So what the heck should I wear? I lived in yoga pants and changed my tops often and I hated seeing the blood stains. Just a few of the craziness of 2012!

Going through this I missed a lot of life. I look through my journal and see how sad I was missing my children’s activities, trips, birthdays, anniversaries, etc… But now I have to look back and be thankful that I am alive and able to enjoy those even more this year.

Everyone going through this is different, but for me I started turning a corner about 7 months in. Nowhere near perfect skin but started to get back to normal living. The sun had a lot to do with my healing. I tried it in March/April, 4-5 months in and flared. My skin was not ready. Tried again in June and still not ready. But by July it felt good and I sat in my driveway for a bit each day. I loved telling my husband I had to go out with my book and have healing time! J By November I started flaring again. No sun so I wonder if that is why or my body is just not ready. It was not a big flare but more like patches of eczema. It will be in a spot or two (inner elbows, breasts, underarms) and get red and itchy and flake and better. I wondered if back to eczema, but after listening to Dr. Rap I believe I am still in TSW. But I will take this over what I went through the past year and it is even way better than the worst of my “eczema”.

Everyone heals differently and find different things that help them through this so I do not want to say what I have gone through is what anyone else will. But I will say that it gets better. Slowly but surely. But it does! 

 You can see Jen's progress photos here.