I remember Jake's blog written by his partner. I remember feeling a sense of loss and sadness when she wrote "It. Is. Over."....yet at the same time I was so happy for them that they had moved on with their lives. I think that feeling of loss is normal....we hang on to the words of those who have gone before us. We wait for the next blog post waiting to see pictures and progress as it brings hope during our darkest moments.
I had the same feeling recently of wanting to move on....step away from everything TSW. Not because I don't want to help those in need. On the contrary I want to help more now that I feel so much better. Yet I have been so overly consumed by my skin for the last year, I now have this desire to never discuss skin ever again. It's as if talking about it will make my skin regress somehow. I know how silly that sounds yet it's how I feel. I want so desperately to do a study on the MTHFR gene mutation and its possible link to TSA/TSW and help those to get through this process faster. Yet at the moment I can't find the ability to focus on that right now.
Maybe this is a form of PTSD....I feel anxious just at the thought of writing this post. I worry about so many of you going through this as I know how painful and dark the first months are. I realize I have already stepped back from blogging and posting on the forums. I read everyone's blogs daily but no longer comment. It's not than I don't have anything to say as I want so badly to provide the encouragement and words of kindness so many of you need. But for some reason I have already started putting up walls. I have no idea why. All I know is I see it happening not just to me, but to others who are in the final stages of healing.
I can't make any promises, nor am I going to make any major announcements. I am just acknowledging that I see myself moving on. I see myself no longer desiring to take pictures for comparison. I will still continue to post pictures as I know how others' pictures helped me cope. Yet I no longer need them for myself to see if I can pick out any positive changes. I plan to move on with life as I have over the past 4-5 months since seeing a major improvement. I plan to start blogging more on my "other" life....the one that includes homeschooling, healthy eating, and homesteading.
Please know that I am always available for questions. I am not abandoning any of you! I am just living my life more and more each day and no longer needing to focus on my skin so much.
As for my skin....status quo for now....hands still bad but looking better. Sores on ankles starting to finally heal and neck/face perfectly clear. Lower arms dry and scabby. Upper arms, legs, torso perfectly clear. Overall about 90% healed and clear. No major flares in 5 months....just isolated mini-flares from time to time lasting less than a week. No spreading of bad skin in 5 months....just progressive healing.
My success I can now say with 100% confidence is treatment of my MTHFR gene mutation. Secondary to that moisturizer withdrawal played a huge part in healing. I see that there are now 4 of us with a confirmed MTHFR gene mutation. I think this is key to why some people develop TSA and others do not. I am really praying the NEA gives this some consideration. I think it may play a critical role in how eczema is treated in the future.
I have some pictures to take and upload soon. My skin looks and feels great (except my hands). I think I am on the tail end of this TSW, If I'm wrong I will gladly say so and post pictures regardless. I do not wish to give anyone false hope yet being one year out after 30+ years of strong daily use of TS, I think I sped up my healing by at least a year or more. I can't say this with any amount of proof obviously except to say that my first 7-8 months were pure hell and one long continuous state of flaring. The pain was out of this world. I went from that to working full time in 3-4 weeks after treatment began. I would still be working full time if my hands did not react so badly to the harsh soaps at work. I am full of energy, have no pain, and no body temperature problems. I have some itching and flaking here and there but that has been reduced by over 75% at least. I took a trip cross country and back doing 100% of the driving taking care of 3 kids and a puppy. Not an easy task by any means....yet it was fun and adventurous. I had no problems with deciding what to pack or what to wear. It was by far a tribute to my success and determination to find a way to heal faster.
Seeing my brother for the first time in 9 or 10 years!
First time my neck cleared 100%
Our adorable new puppy Aurora.