The first thing we want to let you know is that we are not insane or crazy. If you do not agree with us, that is completely your perogative. We understand - because we used to have people try to tell us the exact same things you will read about here.....but until you get sick or suffer a dibilitating ailment why change anything? If it is easier to pop a pill to eradicate pain then why not? You are busy - you have a life to live and things to do! We get it - we were the same way. Our story is simply that - our story. You can believe whatever you like, but we know what we have experienced and what is working for us.
Had I not gotten sick...and then sicker, I can personally guarantee you I would NEVER have started ANYTHING. I was totally happy watching TV, being a junk food homebody and pretending there was nothing wrong. The problem was - the issues were still there - on my skin. Something was wrong and I needed to figure out what it was. It was only because my husband refused to give up looking for an answer that I even bothered to continue. I was so disappointed in the medical community that I could barely stand to go back to another doctor. He really kept my spirit up and is making sure every step of the journey is one we take together.
It started with acne on my face. I thought it was acne - I was 21 years old and had never had acne as a teenager. I found it strange, but people around me always said if you don't get it as a teen, you can still get it as an adult. I treated it the same way anyone else treated acne. I used scrubs, treatment creams and even went to my doctor who gave me antibiotics when it really got bad.
The problem was that the acne wasn't like the average person's acne. Remember, I had never really 'experienced' acne, so perhaps I was a bit naive too. There was alot of pain under my skin. Someone told me, "Just pop it then" so I did - except that white part that usually comes out wouldn't budge. At all. I finally used tweezers and pulled out a gelatinous root-like structure the size of half of a grain of rice. Again, thought it was acne. It hurt so bad when in my skin, and pulling it out was like setting fire to your face. Surely this couldn't be what acne is like! No wonder teenagers always complained! When it was pulled out, the pain was instantly gone - and the location where I had pulled it would bleed - a lot.
I continued this for years. I never gouged at my face intentionally, but when I would see 25 of these in an open sore on my face, I wanted them out. They hurt!
In 2008, a sore appeared on my chin that lasted 2 months:
2009 saw part of my eyebrow eaten away when it spread over my eye and started working its way down. The photograph below shows the skin problem before it moved into the eyebrow.
The pain was intense - as was the time taken to ensure the areas were clean. I had no idea what it was, and found myself in the bathtub on a few occasions pulling the poor me card while I cried silently.
I have scars. Both cheeks, chin, eyebrows, forehead....let's just say my face has a scar in every sector. My body has them too. Over time, we tracked the 'flare' of the skin condition and realized that it flared whenever my hormones did every month. Progress - at least something to go on.
I was refered to specialists - none of them helped. One dared ask how good my plan at work was and then proceeded to give me an antibiotic prescription for 'Keflex' for an entire year. Not one of them offered to biopsy or follow up with me. I had even taken a sample of my own in and was told that although it was gross, it was 'just a boil.'
12 or so doctors over the years - 9 different diagnosis'. I have been told I have 'complex acne,' boils, absesses, eczema, follicilitis, delusional parisitosis, dermatitis, ringworm and scabies.
I had purchased a cheap kids microscope just to see what I could see. I was grossed out, sure, but this was my body and if something was wrong, I certainly wanted to know what. It had a magnification of 400X - enough for me to see we weren't dealing with simple acne or delusional parasitosis.
I sought out doctors in an attempt to get help........and the referals kept streaming. I was refered to one specialist who sat me down in his office for a grand total of 3 minutes (that's generous) and proceeded to tell me that I suffer from 'Delusional Parasitosis.' He believed I was clawing at my own skin and creating the damage myself. I was so enraged that I had bothered to drive 3 hours to see him that I couldn't even tell him off.
I returned to the doctor who had refered me and explained how disappointed I was - and he spent the rest of our appointment giving me reasons I should see the psychotherapist. I asked for another referal to a different dermatologist. This was the point where the doctor asked to speak to my husband in person - y'know....about my personality and what it's like to live with me. I was stunned. Now I had to PROVE I wasn't insane and doing this to myself? Not only was I not going to get another referal thus ending my quest for a cure, but this doctor actually thought I needed a psychotherapist based on the referal from a guy who couldn't stand to look at me for longer than 3 minutes. Of course, the 'specialist' ended up being a hair transplant/spa skin specialist so I shouldn't have been surprised.
My husband did go to the doctor and speak about me. He found it a complete waste of time as now the doctor starting explaining that I might have ALS or Crohn's Disease. When I heard this, I knew my journey through the cobweb of the medical community was over. I refused to jump through anymore hoops and listen to their condescending diagnosis. They wanted to scribble their prescription for something expensive and get rid of me. They had absolutely no idea what was wrong with me yet wouldn't just come out and say it. This same doctor had now given me 5 different diagnosis' all by himself - and still wanted me to go and visit a psychotherapist. It had turned into a waste of time - while I had been busy trying to get a docotr to help, my skin continued to be an issue. I had to focus on myself.
It was the delusional parasitosis diagnosis that finally made my husband give up on the medical community. It plunged him into late nights online researching and filtering information in the hopes that something would come through and make sense for my situation. He sat there and read for hours - even long after I had stopped showing interest.
There came a point where I couldn't go to work anymore. I couldn't cover up the problem - and I was terrified. All these years no one really saw the problems on my face because I covered them up - and I was good at it. I wasn't vain - I didn't want a small town community looking at me as though something was wrong and unfixable....or that I was dying. That's always the whisper - someone is dying. Face it, we're all dying....I would just like to do it really slowly. :)
I'm not a nut (OK, I am...but not in this case), but I'm sure not going to sit back and believe everything that other people believe for the sake of fitting in. I OBVIOUSLY don't fit in with the majority and that's alright. I like my music loud, being positive is always a plus and I believe that if you can't say anything nice, be quiet. But there definitely is a problem - and it is my problem. I don't expect anyone to fix me (medical doctors aren't taught nutrition in medical school, they are taught how to prescribe meds and get a free vacation) and pity isn't on the agenda.
My husband decided just this March (after a month of late night online readership) that we were going to change our diet and see if it made a difference. Here's where I admit things I never ever thought I would....ever.
I drank no water - ever. I mean EVER. I wouldn't even accidentally swallow some in the bathtub. NONE. I may have absorbed some swimming in the summer, but not hardly enough to sustain me. That was my first mistake. Second, all I ever drank was Pepsi....and I mean a case of 12 would barely last a day. I know, bad me. I also loved junk food. Fast food, crap food, gas station food. I had a busy life, a busy home life, a busy schedule and I grabbed what I could on the go. I'm not proud of that - but I am responsible for it.
When my daughter was born I weighed 266 pounds (had gained 80 when pregnant....I know). In two years I dropped 100 pounds - no diet, no nothing. I was eating crap all the time and not taking in any nutrients. What was happening (I was told later) was that my body was taking the nutrients it needed to keep me going....FROM ME!!! I wasn't replacing them (chips, pizza, steak and soda can't do that) so my body was wasting away trying to keep me on my feet. I recall being sick a lot too - the flu or a cold always found me and settled in for a few weeks at a time.
No one could tell me how to eat. I paid for my own food, I worked for the money - I would decide. I was also stubborn....betcha you couldn't tell. :) It wasn't until I woke up one morning and my right eye had swollen shut that I realized I was up against something I had no idea how to fight.
So when hubby came to me and said he thought he had figured it out, I shrugged and said I would try anything. I listened half-heartedly while he explained that he thought most disease could be healed with food. I was thrilled! I could fix myself just by eating? Excellent! Sign me up! Then he told me what I'd have to eat. "But.....but....I've never eaten a real vegetable in my LIFE...will this work??" I asked. He replied, "Well, nothing else has - let's give it a try."
We headed to the city and went from junk food junkies to organic oddballs - literally overnight. I threw everything in my cupboards out. My fridge was naked inside. All processed, packaged, canned and pasteurized foods....gone. We bought raw honey, Goji berries, avacado, almonds, reishi mushrooms and a huge selection of fruits, seeds, nuts and berries. All raw food. No meat, no dairy. I thought I was going to die right there. NO MEAT?? Where would we get our protien from?? Hubby was on it - and planned meals that were fresh raw foods. I have to admit, it wasn't great......it was downright boring.....but after a month I couldn't get enough of the stuff. I tossed all carbonated drinks (I could have cried) and started on nothing but water with lemon. We also read that our water should be tested so we bought a tester.
Bottled water should be between 8-10 parts per million of minerals. The minerals are what calcifies your system and shuts it down (hardening of the arteries and internal organs). Our water tested at 308 parts per million. We switched to reverse osmosis water immediately. That's really when I started seeing changes in myself.
We learned food cooked over 108 degrees celcius is rendered useless and dead of nutrients. We stopped cooking. Call me ignorant, but I never knew any of this! I didn't want to give up my hamburgers, french fries, Pepsi or chips....but I certainly didn't want to lose my face either! I chose the lesser of the two evils and started eating raw foods. Sure, I caved once or twice (and occasionally still do) but I can't eat a steak without now getting nauseous and a year ago you wouldn't have been able to pry it out of my cold dead hands.
I felt like crap for about a month. I barely got out of bed. I cursed health food - cursed it! We found a naturopath and started taking his advice on how to cleanse and renew your body from the inside out. I started cleansing - and although I used to laugh whenever someone would mention a topic like that, I ain't laughin' now! I know what can live in the human body - and you may never convince me to eat a chip again.
There are so many things I never knew - and I find learning opens up so many worlds and possibilities for me. I did have to learn to be more open-minded about things and realize that everything I thought I knew was not necessarily true....like doctors can be helpful and grocery stores would never sell things that can hurt us.
Basically, we wanted to set up a blog so that the journey through suffering something like this may be lessened for someone else. I had someone ask me if it could be skin cancer. I don't know - none of my doctors would biopsy my face or the samples I had available for them. I can't worry whether it is cancer or ALS or 'delusional parasitosis' (haha!) - I have to heal myself. I have to think positive and put good food into my body while getting the toxins out.
I still have the skin issue (not as bad), and I have seen dramatic changes!! I also now too that if it happens to be cancer (and we will explain why in a future post) that I am now armed with the tools I need to fight it. It won't matter if I ever get a diagnosis now - I'm considering this a do or die situation....and I'm not giving up without a fight.
We have been working with a wonderful naturopath for about 6 months now - he is amazing. With his permission, I will post his information here at a later date. He is keeping me on track with good advice and helpful support. I can't call my town doctor and speak to him on the phone (because he can't bill me for that) but my naturopath 'Bruce' talks to me and never charges me a dime. I'll be seeing him again Thursday.
So, we now have a venue - our own little soapbox where we plan to share the information, websites, videos and horrors we have found in regards to food and little updates on how I'm doing.
It's scary, amazingly thought provoking and hard to do - but dyin ain't much of a livin'....and I plan on being around for a long time....or as hubby says, "Long enough to be a huge burden on my pension plan."
Stay tuned - hubby has a lot to add, and so will I! Thanks for joining us!