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!
Wednesday, December 31, 2014
Wednesday, December 17, 2014
22 Months and Pictures!
So here I am with my 22 month update and pictures I have taken over the last few days. I hit the 22 month mark on the 14th. My TSW anniversary is Valentine's Day of all days! So my 2 year mark is approaching. Not worried about it at all. I know many people who have an anniversary flare. Last year about a week or two before my 1 year mark I did experience a flare on my hands, wrists, arms , and ankles. I looked back on those posts today and I CANNOT believe how far my hands have come! Working as a nurse, I used to slather my hands in potent steroid creams to keep them from breaking open and having to deal with infections. I expect if I suffer a 2 year anniversary flare, it will more than likely affect my hands again. I think they will be the last areas to heal. But I have to say they have been doing very well. I experienced a flare on only 2 fingers about 2 months ago and they are now showing signs of healing this past week. I even worked about 24 hours a week over the last 2 months and my flare never got any worse than those 2 fingers.
As for the rest of my skin....dry and itchy probably from the cold winter weather. I still get pink on my face, neck, and arms with dry patches. I have small sores here and there that heal within a few days or a week. I get hives now and again. Sometimes I will have them for a few weeks and then they go away for a few days. I know they get better if I stay away from dairy but with the holidays I personally do not want to worry about following a strict diet. It would cause me more stress so I just try to be reasonable. In the pictures below my face and neck look like they are flaring, yet they feel great to me....very little itching and no burning sensations or even feelings of irritation. I remember taking the pictures a few days ago thinking they were going to come out great with nice clear skin, only to see all the pink and dry patches. I find it frustrating as there were times I would take pictures of my skin thinking the pictures were going to show just how awful I felt only to see semi decent pictures....sometimes pictures cannot truly grasp how bad or even how good the skin really feels. So even though my skin looks irritated, it doesn't feel irritated and that is more important to me than anything!
Recently I have gone through a few weird things. One being a feeling of flaring without any actual problems with my skin. Last week I was having cold and hot flashes for 3-4 days. I felt like I wanted to jump out of my skin but my skin actually felt fine. I had to wear ice packs on my neck for over a week because I felt so over heated. Even my skin felt very warm to the touch....I froze everyone here at home because I con't stand having the heat on. I turned the thermostat down to 64 or 65 degrees those days and still felt hot.
As for my supplements....I have been on and off of them the last few months. I take them only when I experience flaring. The MSM powder really helps calm any inflammation. And when I'm not taking all my supplements, I am taking basic things I would even if not going through TSW, like my probiotics, and my fermented cod liver oil for Vitamin A, D during the winter. I also take my active B's supplement about twice a week. But that's all. I've been so busy this month that I just don't take the time - I probably should stick to most of the supplements even when not flaring, but I don't.
After the holidays my focus will be our diet and doing those last 2 cleanses. I was going to the do the gallbladder cleanse a few weeks ago but didn't because I was experiencing gallbladder pain - I wanted to spend more time softening any possible stones with a few weeks of apple juice. I personally do not want to do a gallbladder cleanse only to move a big stone into one of the ducts and get a blockage. No thanks! I will play it safe and focus on this later. I truly just want to enjoy the holidays!
As for any flares I do experience - they are typically localized to a small area like my chin or one forearm. They last no longer than a day or two with a few exceptions of some lasting 3-4 days. I no longer experience any burning of the skin - all flares now are just on the surface. I truly believe most of my nerves are now healed. Every so often an area will hurt when I move - I figure it's dry skin pulling. I no longer get deep sores - everything seems to be just a few layers deep. I haven't shed a lot of skin at once in many months now. I change my sheets weekly like normal and no longer brush off dead skin. It's just not flaky anymore. I no longer lose a lot of hair at once like I did on and off during TSW. My hair is growing in where I did lose it and feels nice and strong. My nails were badly affected during my first cleanse almost 2 months ago. Half my nails are bumpy and weak. But I've recently started drinking more bone broth and taking a collagen supplement powder so hopefully in a few months my nails will be strong and healthy.
As for the rest of my life....working part time is going very well. Our house is in order. I exercise 3-4 times a week. Kids are doing very well with their schooling. Have great plans for Christmas. And my energy levels are on average very good. I do experience fatigue now and then, but for the most part it doesn't stop me from getting things done. I have been tracking my blood pressure and pulse since starting TSW. The absorption of the steroids over years affect the adrenals in that they falsely lower blood pressure and heart rate. I had concerns that once stopping the steroids I would experience high blood pressure. My blood pressure did get high for me for the first 18 months or so...120- 130/70- 80. My heart rate was elevated in the 80's and 90's at rest. But the last few months of exercising and what not I have noticed a steady decline in blood pressure and heart rate (I get it checked every 2 weeks or so at the grocery store). Well yesterday my BP was 104/66 and my heart rate was 71. I did not sit down for 5 minutes first like they recommend. I was flying around the store and just sat down and hit start. So I am very happy with this as it shows I am responding very well to the exercise! And considering I am over 40 and on no prescription meds nor taking anything to lower my blood pressure, I'd say that's pretty darn good!
One last thing: Just want to say thank you all for reading and supporting me! I was not sure blogging about my journey was the right thing to do, but even this far into TSW, I am still receiving comments and personal emails that make me realize all this blogging is worth it! Just recently I received this comment and it brought tears to my eyes: "Thank you so much for your blog. I recently heard about topical steroid withdrawal. I have not had any steroid medication in about 6 months but still suffering. Your pictures were like looking in the mirror...you give me hope! ..thank you!"
As for the rest of my skin....dry and itchy probably from the cold winter weather. I still get pink on my face, neck, and arms with dry patches. I have small sores here and there that heal within a few days or a week. I get hives now and again. Sometimes I will have them for a few weeks and then they go away for a few days. I know they get better if I stay away from dairy but with the holidays I personally do not want to worry about following a strict diet. It would cause me more stress so I just try to be reasonable. In the pictures below my face and neck look like they are flaring, yet they feel great to me....very little itching and no burning sensations or even feelings of irritation. I remember taking the pictures a few days ago thinking they were going to come out great with nice clear skin, only to see all the pink and dry patches. I find it frustrating as there were times I would take pictures of my skin thinking the pictures were going to show just how awful I felt only to see semi decent pictures....sometimes pictures cannot truly grasp how bad or even how good the skin really feels. So even though my skin looks irritated, it doesn't feel irritated and that is more important to me than anything!
Recently I have gone through a few weird things. One being a feeling of flaring without any actual problems with my skin. Last week I was having cold and hot flashes for 3-4 days. I felt like I wanted to jump out of my skin but my skin actually felt fine. I had to wear ice packs on my neck for over a week because I felt so over heated. Even my skin felt very warm to the touch....I froze everyone here at home because I con't stand having the heat on. I turned the thermostat down to 64 or 65 degrees those days and still felt hot.
As for my supplements....I have been on and off of them the last few months. I take them only when I experience flaring. The MSM powder really helps calm any inflammation. And when I'm not taking all my supplements, I am taking basic things I would even if not going through TSW, like my probiotics, and my fermented cod liver oil for Vitamin A, D during the winter. I also take my active B's supplement about twice a week. But that's all. I've been so busy this month that I just don't take the time - I probably should stick to most of the supplements even when not flaring, but I don't.
After the holidays my focus will be our diet and doing those last 2 cleanses. I was going to the do the gallbladder cleanse a few weeks ago but didn't because I was experiencing gallbladder pain - I wanted to spend more time softening any possible stones with a few weeks of apple juice. I personally do not want to do a gallbladder cleanse only to move a big stone into one of the ducts and get a blockage. No thanks! I will play it safe and focus on this later. I truly just want to enjoy the holidays!
As for any flares I do experience - they are typically localized to a small area like my chin or one forearm. They last no longer than a day or two with a few exceptions of some lasting 3-4 days. I no longer experience any burning of the skin - all flares now are just on the surface. I truly believe most of my nerves are now healed. Every so often an area will hurt when I move - I figure it's dry skin pulling. I no longer get deep sores - everything seems to be just a few layers deep. I haven't shed a lot of skin at once in many months now. I change my sheets weekly like normal and no longer brush off dead skin. It's just not flaky anymore. I no longer lose a lot of hair at once like I did on and off during TSW. My hair is growing in where I did lose it and feels nice and strong. My nails were badly affected during my first cleanse almost 2 months ago. Half my nails are bumpy and weak. But I've recently started drinking more bone broth and taking a collagen supplement powder so hopefully in a few months my nails will be strong and healthy.
As for the rest of my life....working part time is going very well. Our house is in order. I exercise 3-4 times a week. Kids are doing very well with their schooling. Have great plans for Christmas. And my energy levels are on average very good. I do experience fatigue now and then, but for the most part it doesn't stop me from getting things done. I have been tracking my blood pressure and pulse since starting TSW. The absorption of the steroids over years affect the adrenals in that they falsely lower blood pressure and heart rate. I had concerns that once stopping the steroids I would experience high blood pressure. My blood pressure did get high for me for the first 18 months or so...120- 130/70- 80. My heart rate was elevated in the 80's and 90's at rest. But the last few months of exercising and what not I have noticed a steady decline in blood pressure and heart rate (I get it checked every 2 weeks or so at the grocery store). Well yesterday my BP was 104/66 and my heart rate was 71. I did not sit down for 5 minutes first like they recommend. I was flying around the store and just sat down and hit start. So I am very happy with this as it shows I am responding very well to the exercise! And considering I am over 40 and on no prescription meds nor taking anything to lower my blood pressure, I'd say that's pretty darn good!
One last thing: Just want to say thank you all for reading and supporting me! I was not sure blogging about my journey was the right thing to do, but even this far into TSW, I am still receiving comments and personal emails that make me realize all this blogging is worth it! Just recently I received this comment and it brought tears to my eyes: "Thank you so much for your blog. I recently heard about topical steroid withdrawal. I have not had any steroid medication in about 6 months but still suffering. Your pictures were like looking in the mirror...you give me hope! ..thank you!"
My face and neck in a state of pinkness and irritation but feels fine.
Left arm pretty decent - but like my face and neck still pink here and there. But feels really good.
Right arm same as left - looks worse than it really is.
Legs still doing very well. Don't mind the hair - haven't had time to shave or get waxed!
Close up of foot and ankle....nothing going on here!
Left hand doing well...just a few small sores/spots but they don't bother me at all. Just noticed now I have slight elephant skin on my forearm/wrist area.
Right hand is where I have those 2 affected fingers. But they are looking and feeling better each day!
Merry Christmas!!!!
Monday, December 1, 2014
Bad Blogger!
So I declare I get the bad blogger of the last 6 months award! It's actually a very positive thing - I simply just have been doing so much that I have not had the time to sit down at the computer, download pictures and write. And I'm only working part-time! I misplaced that camera again and I've been going going going since my last post! I have been feeling a bit tired the last few days - the most tired I've felt since I did the cleanse a month ago. I will be doing my gallbladder flush this Thursday and not starting my internal cleanse until after the new year. I simply just have a lot to do! My house is finally in order (except for a few things that I will tackle next year but they are minor organizational things). I am starting to exercise again and I am nearly ready for Christmas. We spent this past weekend making a Thanksgiving dinner (BEST EVER) and putting up the tree. It was a very wonderful weekend and not marred by TSW in the least bit! My skin is still great - with a few small spots here and there along with those pesky daily hives. I just don't think about it too much - except for having to bandage 2 fingers for work and having the occasional itch attack with the hives, my skin is not really an issue anymore in my life. My focus lately has been my overall health and energy levels and of course getting my life in order after neglecting everything for over a year. I still feel like I am dealing with internal issues like with my liver, gallbladder, and adrenals. I will be getting my liver enzymes checked again in a few months once I'm done with all cleanses. I am still having a problem losing the extra weight so I'll also ask to have my thyroid checked as well.
But anyway, just wanted to stop and check in to let you all know I am still alive and very well! I pray you all find relief and peace soon within your own TSW journey!
But anyway, just wanted to stop and check in to let you all know I am still alive and very well! I pray you all find relief and peace soon within your own TSW journey!
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