Hoping all of you sufferers out there and lurking blog readers have a wonderful start to the new year! Every new year brings upon reflection of the recent past and new hope for the near future. But what happens when we don't want to reflect on the recent past because it's too traumatic to think about? What happens when we don't have much hope for the future because we are in the beginning of a long sentence of suffering? All I can say is allow yourself to be angry, to be sad, to allow yourself to create a hermit-like existence....but never ever lose hope! We all have hit that critical moment when all hope seems lost. We feel like we can't take one step more....as if the complete lack of hope will drive us over into a pit of no return. But somehow, someway we come back, we find a thread, even a skinny lifeless thread....anything to hold onto in the depths of despair. That thread does not have to hold much light....but just enough to bring us off the edge.
So what has brought on such doom and gloom talk at the start of a fresh new year? Have I gone into a wild and crazy flare that is driving me insane? Nope! In fact my skin is awesome. But something made me think of those dark days. This past weekend my parents came for a 2 day visit. We live near Howe's Cave...a neat little cavern 150 feet below the surface. We took a trip there and had a grand time. During the boat trip they like to show you just what complete and total darkness is like. They turn off the lights for about 30-40 seconds....feels like 30-40 minutes as there is no way your vision is going to take in ANYTHING! Complete and total darkness! It's scary because when we turn the lights off at home we give it a few seconds and our eyes adjust to the low light that seems to come from somewhere - anywhere. But not down there in the deep dark cave. Those few seconds of my eyes trying to adjust and my brain saying "Relax, you're not going to see anything....deal with it" were like the beginning of TSW for me. I was in agony from the beginning but hoping I was going to be the one who healed in 6 months! I kept saying to myself, "Just deal with it, it WILL get better". But see, down in that cave after about 10 seconds I was no longer dealing with it....I was turning my head in all directions trying to find ANY source of light. I knew they were going to turn the lights back on eventually but I felt this was long enough...I wanted out. I am not claustrophobic by any means, and I was not starting to panic. Yet I started down that path of "What if?".
Oh yes....the dreaded, "What IF?". What if the lights don't come back on because of power failure? What if we are trapped down here for days...will we go blind? What if my skin doesn't get better and I'm left with this shredding, painful outerbeing that used to be a real person? What if it takes 5 years to heal? What if my spouse leaves me because I'm a mess? Oh those first 6 months were so full of what ifs! I cried every day praying for the agony to end! I was reassured time and time again that I would heal eventually and there was no way to ease the suffering. Time was my only healer. Around the 6th month mark or so I came to that brink of hopelessness. I wanted to die only to just end the suffering. I saw the pain reflected in my husband's and children's eyes. They did all they could for me but they couldn't stop the pain. That was the worst part for all of us....the feeling of helplessness. My family wanted to help end the pain, but they could only stand by and watch as I suffered. I tried to suffer quietly...tried to put on a smiling face....but I failed miserably. TSW wore me down to the marrow of my bones. I had nothing left to give....nothing left to smile about. My whole family was spinning down with me.
And then lo and behold after 20 seconds of pure darkness in the cave, someone's phone lit up inside their pocket. It was so faint but the eyes grabbed that bit of light like a magnet to a piece of metal! It was the briefest moment of joy....mixed with doubt and more what ifs. But then within 10 seconds the lights came back on full force! OH THE JOY! You see I found my glimmer of hope in a local naturopath. I came back from my despair with a determination that I was going to find an easier way through my suffering. I had not suffered a few good days...in fact I remember thinking I was due for 2-3 good days because of my cycle but that month those few good days decided to skip me. I remember thinking I was no longer to going to play the poor me role. I "woke up" if you will and took matters into my own hands. I started researching and theorizing about TSW. I just KNEW there was something everyone was missing. There had to be something that drew us into this suffering that others seemed to skip. How was it that most people could use steroid creams on their bodies for years never getting any worse and never having the steroid creams just stop working? Why were we so special? I figured it had to do with replication of the skin cells - some kind of damage to the RNA of the skin cells. So I found a naturopath that also had a degree in cellular biology..., the kind of guy I was looking for!
My theory was somewhat off but not by much. It had to do with genetics and poor repairing of the cells. Cool! I was on to something. Then treatment began....and the LIGHTS CAME ON! Within a few weeks I saw huge improvements - that were majorly enhanced by stopping all moisturizing at the same time. The pain stopped, the itching calmed to a manageable level, the flares were lasting days and hours, not month after month. My life had returned to an extent.
You see the genetic mutation a lot of us seem to have affects every cell in our body - not just the skin cells. I have spent 2014 trying to heal my whole body. It has paid off in many ways. I still have much healing to do - I can feel it on my tired days. But for the most part I am doing very well!
So hence this year is the year for a new me....a transformation is going to occur. I could try to explain what I mean - but what's in my head does not always translate well into the written word. This transformation is one worth reflecting on. Yet it has only just started to begin! So you will all have to wait until the end of 2015 to see what I mean! The basic aspects are for me to transform into a better mom, a better wife, a better nurse, having a better body, having a healthier family, and being someone I have dreamt up in my head but never delivered fully on. (If that even makes sense!).
Here's to a new and better year for us all! What ever you do, don't ever lose hope! Fight back! Don't follow the crowd and give in to anecdotal "evidence" that says time is your ONLY healer! Fight to find what will work for you! Fight to find an easier way! Just fight!