Hopeful Holistic Healing: September 2014

Since this blog and a lot of my life has been dedicated to natural healing methods and holistic ways of getting and staying well, I have not (up until this point) talked about my steroid addiction. This article is going to be very difficult for me to write. This article will probably be very difficult for me to post publicly once I've written it.

If you go back and read my very first blog post here you will find that I had been to many doctors, changed my diet, started using essential oils, etc. in hopes of making the inflammation within (and without) my body go away. While all of that has changed my life and made my family and I healthier, it still never completely took away my original reason for trying to heal my body in the first place.

It all started three years ago with a small rash on my face above my upper lip. I was diagnosed differently with each doctor that I saw and given steroid prescriptions by each one of them. I now believe that this rash was just a small amount of eczema resurfacing. I've had eczema on and off most of my life. I would just dab on that steroid cream and BAM, rash gone. It was the only thing I could use that would show immediate relief. Call me vain but if it was not on my face, I probably would've tried to hold off until a natural healing approach worked. I just was so embarrassed by how I looked and not to mention it was painful to talk and eat. So, I put steroid cream on it once in awhile.

I have recently learned that steroids have a cumulative effect. Yes, even topical steroids. Your body remembers them. So, when I would use a little here and a little there over the years my body would "remember" the last time I used it as if I had never stopped. This is where the addiction can come in.
No doctor EVER told me what harm steroids could cause. Not one doctor told me how potent of a steroid they were giving me and what it would do to me if I had long term use. One dermatologist prescribed me a topical anti inflammatory/immunosuppressant (not a steroid) Elidel and did tell me that it had a black box warning for skin cancer. Of course I was very cautious with that one!

For THREE years I was applying steroids. It started with a mild steroid just on my face above my lip. Then, it spread to other parts of my face. After the mild steroids weren't working, a stronger one was prescribed. Then the rash started spreading to my neck, chest, arms, legs, back, SCALP!
I eventually had to go on oral steroids because the topicals just weren't doing their job anymore. The oral steroids barely worked and I went off of those. I still had rashes everywhere.

After I had my last son I got on my knees and poured my heart out to my Heavenly Father. "What is WRONG with me? Why am I in so much pain. Why won't it go away? Please lead me to my answer. Please guide me on my path so that I might help myself and others who may have whatever this is." I cried and cried to Him. When I got up from that prayer, I went to the computer and typed in "Topical Steroid Addiction". I had no idea where that came from. I had no idea why I typed those words in particular. I now know that I was being led. God had answered my prayer immediately in my moment of distress. I was led to a website called ITSAN.ORG. It stands for International Topical Steroid Awareness Network. Through this website I read about people just like me. People who started with something so small and ended up with something uncontrollably painful.

I found out that THE ONLY way to get better was to STOP. USING. STEROIDS.
I was so afraid of this! I knew what was going to happen because I had tried to stop before and everything got worse. But I wanted to get better so I chose to make a commitment and do it.

Imagine the worst torture and pain you could ever experience in your life, then times that by 100. The first month I was itching down to the bone everywhere, burning like I had third degree burns, oozing, swelling, bleeding, feeling 'pin pricks', no sleep at all, shedding skin all over the place, etc. It was constant all day, all night and nothing made it go away. I cried for weeks. I cried and screamed in pain in the shower. I didn't want to go anywhere. I didn't want to see anyone. Most people didn't know what I was going through. I wanted to apply lotions because I was so dry but it burned so bad. I prayed and continue to pray constantly for strength that I DO receive.

There is a dermatologist who 'discovered' this issue. Dr. Marvin Rapaport is a co-founder of the ITSAN organization. You can read more about him HERE. There is also a short Questions and Answers video with him on YouTube that is very informative if you'd like more information. Click here for video.

A lot of doctors do not believe that topical steroids can cause an addiction issue. They know this can happen with oral steroids though. They will tell you that topical steroids can thin the skin but that's about it. I had been told by one doctor that I probably had lupus, another doctor said I had major adrenal fatigue, another said I had a thyroid issue, another said I had an allergy to gold and vanilla, another said it was probably some contact allergy that I would have to figure out. Not one said it could be my steroid usage. They all knew I was using them. I have since found that long term steroid usage can lead to these things or I should say the appearance of these things. The body is just so sensitive.

My adrenal function is totally messed up. My body now needs to 'learn' how to use its adrenal glands again which are responsible for so many things in the body including the reduction of inflammation. My body now overproduces histamines. If I scratch my leg, my whole body will itch for an hour. I have "elephant skin" on my neck which is a thickening of the skin. The medical term would be lichenification. I also had it bad on my eyelids but that is actually almost healed thank goodness! My skin is also so thin in certain spots that if I just bump up against it it will bleed. My lymph nodes are swollen as my body is trying to detox.

This has been very hard for me since I just had a baby 3 months ago and the first 2 months it was not even enjoyable to hold him or feed him because it hurt to have anyone touch me. I feel guilty that I was not really enjoying my baby the way that I could have been.

I am happy to report that I AM healing but very slowly. It has been three months and I am finally now sleeping at night. Some nights I still awake itching but I am usually able to get back to sleep fairly quickly. My first 2 months of healing I was up all night scratching myself until I bled. Showers are still an issue. It really hurts to be in water at all but I don't want to be stinky! I am just getting to the point where I can wear a little bit of make up and it doesn't drive my skin crazy. I lost most of my eyebrow hair and eyelashes but those have grown back a lot. I'm still very dry and flaky but I've found a cream that helps and my face doesn't burn like crazy as it used to.

Reluctantly, I am going to post photos below of before and now just to show progress. This is so embarrassing for me but I really am trying to raise awareness. I know that steroids play a good part in the medical community but, like antibiotics, I believe they are overused and the full risks are not disclosed. If you or someone you know has to use a ton of topical steroids, orals or injections to control spreading eczema then they are more than likely suffering from steroid addiction. It will just continue to worsen and it causes many side effects including a weakened immune system.

Please, PLEASE do not use them on your children like I did! If you go to Itsan.org you will read stories and see pictures of many children who have had to suffer through this. It is a nightmare for them and their parents.

Dr. Rapaport has seen over 2000 patients with this skin condition and they have ALL healed from this. This gives me hope. Patience is key with this healing process as it can take months to years to finally heal. I still have good days and bad days. I have flares. I was in a constant state of a flare for the first month but now my flares only last days instead of weeks. I can't wait for the day when I am finally healed and can feel comfortable in my own skin again.

Note: These pictures were taken with different devices, in different lighting, and on different days but you will get the idea.