Hello there wellness warriors! My name is Jen and this blog is made to share my story of healing from eczema and my topical steroid withdrawal journey…YES you can heal from this awful disease!! I want this blog to be a source of inspiration & therapy for those suffering from eczema, those going through the steroid addiction withdrawal process, and even those who know someone dealing with eczema. I’m healing everyday and I’m constantly learning new information on healing that I just had to share the wealth. With the knowledge that I’m gaining from this healing process, I hope to go on to help others, whether it be with amazing nutritional foods or being a health coach. I hope that someone can receive this information that I’ve become so passionate about, and take control of their life like I have!
Let’s start from the beginning
I was born in 1985 in beautiful Honolulu, Hawaii. I come from an Army family, so we did our share of moving around so unfortunately I don’t remember anything of Hawaii because we moved when I was only two. From about 3 days after my birth, my mother had the misfortune of having inflamed & infected breasts, so she was unable to breast feed me. Breast feeding is so important in giving the child essential nutrients to build up their immune system, but unfortunately there was nothing that could’ve been done. This lack of nutrients could’ve played a role in the cause of my eczema.
My parents started to notice patches on my skin, that just looked like a rash or what they thought might be ringworm. At about 7 months old the doctors diagnosed it as “infantile eczema” and they told my parents to use the usual suspects: Aquaphor, Vaseline or Eucerin. At one point my parents would have to wrap my arms in gauze because I had broken my skin to the point of bleeding. Along with keeping my nails super short, mittens would be used to keep on my hands to help keep the scratching at bay. By the time I hit 10 months old, the doctors were prescribing me steroid cream… .025% Kenalog cream (triamcinolone) to be exact. For anyone reading this blog with a small child who has been diagnosed with eczema, I urge you to look into the possible immune deficiencies that your child may have, and look into a holistic approach by changing their diet. I believe that in just changing my diet, enriching my immune system with probiotics, using natural topical remedies and healing from the inside out could have eradicated my eczema completely.
Using the steroidal creams throughout childhood definitely suppressed any of my eczema symptoms, but in turn was slowly weakening my immune system and reeking havoc on my insides. Because of this suppression, I was able to be a “normal” child. I participated in most activities that the other children did, went to the pool, played outside until dark, etc. There were definitely times when I felt a little different and self conscious, but I was never teased or alienated. There was never an end to the creams though, if I had a break out I’d slather some cream on it and it would clear up. Of course you naturally stop using the cream because you don’t need it anymore right? Nope! The breakout comes back, and sometimes worse, so you’re back to using the creams again. I was literally a slave to these drugs. I actually got so used to putting Desonide on my face that I would act like it was makeup (because my skin couldn’t tolerate real makeup… that meant no playing dress-up for me). I must admit, although I had a great childhood, eczema would rear it’s ugly head at times and rain on my parade.
So I reach high school and of course things start to change. You’re hormonal, highly stressed because of the workload at school etc. Add now 14 years of steroidal cream use and you’ve got a recipe for a good time! My diet wasn’t the greatest, so that surely didn’t help either. My skin would have it’s ups and downs….thankfully more ups than downs. I remember not really wanting to wear dresses or skirts because of the way my skin would look, and I would cover myself up more during a breakout just to not have people ask me questions about my arms. Going to gym sucked most times, just because excessive sweating would make me super itchy (I believe this to be because sweating is another way of detoxing, so put those nasty toxins on the surface and of course they’re going to make you itch). Thankfully I made it to prom and graduation with some of the clearest skin I’ve ever had, that made for great pictures! Yet of course this clear skin was only in part to the creams that were really doing more harm than good.
Off to college… here’s where things really start to go downhill
I was super excited to start off my bachelors program at The Fashion Institute of Technology. Things were going fairly well in the beginning, still highly medicated, but pushing through. I was having a good time enjoying the city, making new friends, and having great experiences but there were many times when I didn’t feel as comfortable as others and self conscious. Half the time I felt like a zombie because of the antihistamine pills I would have to take at night so that I could actually sleep and not scratch all night long. Using these pills made it nearly impossible to keep my eyes open for early morning classes, and if I was in an Art History class and we were looking at slides it was a wrap! I had one of the worst flare up during the summertime in Virginia after my first year of college, that I actually considered not going back. This break out was concentrated on my feet and legs and lasted about a week. My skin was oozing and peeling off in huge sheets and I was wrapped up in gauze. The dermatologist prescribed me something that I never tried before (a Lubriderm & Triamcinolone compound) and it did the trick. I erased my reservations about skipping my sophomore year, and headed back to NYC. For the next three years I was literally just trying to push through and at times school seemed like a blur. I was highly medicated (I even went to get shots of steroids in my feet and hands multiple times at one point!), stressed, always drowsy and as much as I loved my classes, sometimes I just couldn’t wait to get home to rest. My diet didn’t get any better in college, I was taking full advantage of all the different cuisines the city had to offer, rarely looking for a healthy option, plus add in alcohol here and there. I had terrible digestive issues (in part to my terrible diet) and unknowingly my insides were becoming more and more toxic. I made it to graduation (with a great gpa I might add) and was ready to start working part time with the internship I was in. Unfortunately I only lasted a month….I couldn’t hack it, my body was breaking down on me and I couldn’t be a reliable employee. Devastated, I quit and tried to figure my life out.
22 years of steroid use and counting…
Things just got increasingly worse. My health was declining, I was becoming depressed, my eczema was becoming uncontrollable, I became a recluse, half of the time I couldn’t look at myself in the mirror, I would keep the lights barely dimmed so I wouldn’t have to look at my skin, I could go on and on… it was just BAD. I had moved to New Jersey to live with family and needed to get a general practitioner. I went for my first physical appointment and the doc pointed out something I hadn’t noticed… a lump above my left clavicle. She was surprised that I never noticed this lump before (can you believe that I had been neglecting my body so much to the point that I didn’t even know that I had a weird lump?!). She sent me to the Ear, Nose & Throat doctor to take many needle biopsy’s that only came back with inconclusive results. They ended up taking out the mass, which was actually the size of a golf ball, and the results came back. It was stage 3 Hodgkin’s Lymphoma.
Lymphoma is a type of blood cancer that affects the lymphatic system, which removes excess fluids from your body and produces immune cells. Lymphocytes are a type of white blood cell that fight infection. Abnormal lymphocytes become lymphoma cells, which multiply and collect in your lymph nodes and other tissues. Over time, these cancerous cells impair your immune system.
It was like having an outer body experience when I got the results. My body was screaming out, and I wasn’t listening. All these years I was just continuing to medicate, masking the symptoms instead of getting to the root cause of my health issues. This constant build up of toxins led my body to cancer. I truly felt that I was in the bottom of the darkest hole I’ve ever been in. My saving grace in this diagnosis was that the doctors said, “If you are to have cancer, this is the one to have” (insanely ironic no?). The success rates are phenomenal and the rates of it returning are low. So I pushed through 12 rounds of intensive chemo (6 months twice a month) pretty much just adding more fuel to the fire, but there was nothing else I could do. I couldn’t reject the chemo, I was at stage 3! The next stage is 4, and that’s it!! Those six months were hell, but the light of the end of the tunnel was knowing there was an end date. My already compromised immune system was being eradicated with the poison of chemo, my weight was fluctuating, my hair was falling out and my skin was just becoming worse and worse. I was barely social at this time, I only really saw a few friends here and there, it just became too much for me physically and emotionally to hang out. Through all of this I kept my positivity and faith and I thank the Lord & the support, love and encouragement of my family and friends who got me through that difficult time in my life.
A short sigh of relief
My cancer was in remission but of course I had to have routine PET & CAT scans and check ups (you’re not completely in the clear until past your fifth year of your last treatment and even then the effects of chemo have a half life that lives in your body of upwards to 12 years!). I was slowly trying to build back up my immune system and my self confidence. Every inch of my body was struggling to restore itself back to good health and I was learning to help it out along the way with a better diet (although I was still using the steroidal creams and antihistamines). I still wasn’t fully back to holding down a job, but I tried to keep myself busy creatively with a small doll business that I launched: http://www.jenfreesdolls.etsy.com .
The moment when everything clicked was when my cousin gave me a book to check out, Kris Carr’s Crazy Sexy Diet. She is such an inspiration, please make sure to check out her site! This amazing woman was diagnosed with a rare incurable cancer and has been sustaining her life with a plant strong diet and a non toxic lifestyle. Soon after reading this book I immersed myself in all the information I could about having a healthy lifestyle. I was determined to get my body back on the right track. I slowly started to change my diet, no dairy, no meat (at the time only chicken, fish and eggs), and even cut back on the wheat. I was really educating myself on what we put in our bodies and the toxins lurking in our foods. This quest continued to lead me down the path of detoxification (by stumbling upon this woman named Donia’s website. Her website is another catalyst in my journey to complete healing; so much so, that I modeled this blog from hers and I’m now coaching others all over the world on healing their eczema (feel free to email me: firstname.lastname@example.org for advice and tips on healing)! I also read up on the process of topical steroid addiction withdrawal which only confirmed that kicking the medications “cold turkey” was what I needed to do.
The start of my healing process!
I started my journey of detoxification in March 2012. I knew what I was getting myself into by starting the process, but man, I didn’t know it was going to be this intense! Going through this was such a battle, and it honestly felt more difficult than going through rounds of chemo. I’m a warrior though, I told myself, “If you can get through cancer, you can get through anything”.
When I kicked the creams and the anti-histamines “cold turkey” my body went haywire. All of the suppression that I had done started to come out in every possible way. It hit its peak in June and I truly “grinned and bared it” through every detox symptom that I faced: insomnia, uncontrollable itching where it feels like something is crawling under your skin, fever, chills, muscle aches and throbbing pain, excessive sweating, intense swelling of my hands and feet, oozing lymph fluid out of my feet and various areas of my body, hives, digestive issues, a massive amount of dead skin flakes peeling off, just having water touch my skin burned like crazy and the list goes on and on. My feet got so bad that it hurt just to walk on them, forget about putting on shoes to go anywhere! For the most intense months of my healing I stayed inside, there was no way I was going out in the weakened state I was in, plus it was summertime and the heat would just make my fragile skin worse. The pain became so unbearable that just moving would hurt, but I couldn’t stay still in one position and have my body stiffen up. The swelling would get so bad that sometimes it would feel like my skin was just tearing apart. My face would also swell, break out in spots with leaky lymph fluid with a metallic smell to it (this metallic smell was from the different chemo drugs), then become dry and flakey in a constant cycle. The only time I ventured out was to travel to see my twin nieces on the day they were born in July. This gave me a great boost of motivation and hope to press on.
I’m not going to front, I definitely had my days… ok for awhile it seemed like every day. To be real, if I wasn’t crying all day long from the pain, I was crying myself to sleep. Crying just became a great cathartic release and I guess I looked at it that it was the only thing I could really control. Overtime when I allowed myself to cry, I made sure it wasn’t for hours. I would get it out, wipe my tears and press on. This process doesn’t only test you physically, but emotionally and mentally as well. The loss of sleep had me delirious, feeling like I would never be able to climb out of this hole I was in. The only thing I could do is pray, although I felt like I was being punished or cursed for some reason. Why would anyone have to suffer with a skin disease like eczema for all of their life, to then have cancer (caused from what I believe was an overly toxic system due to the eczema meds), to then have to suffer some more to get rid of all the toxic accumulation? I couldn’t understand it, I just cried out “why?! why?!” just about everyday.
After a lot of time of just feeling despondent I was encouraged to just release. Release all of this anger and sadness that I was feeling. This depression had me down deep and I had to realize, to come out of it I had to just surrender. I was doing what I was supposed to be doing to heal my body, everything I was going through was supposed to happen, it’s the only way. When your body has had 26 years of toxicity plus chemotherapy and it finally gets a chance to purge itself, believe me, it’s going to purge! All I could do is stand back, give it what it needs: whole plant based food, whole food supplements, rest and love and let it do it’s thing. I had to believe in my healing, and the power of my body and prayer. I really had to dig down to the depths of my soul and find my faith, it’s the ONLY thing that can get you through a situation especially like this. You have to walk by faith, not by sight… boy is that saying true for this condition! I had to look past the layers of my broken skin, and imagine the fresh, healthy, new, supple skin just waiting to come to the surface! I had to envision myself in the best health of my life! I had to know that I’m going to come out of this, I can’t put an end date on it, I had to release. Your body will be at complete healing when it’s at complete healing, just release. No matter what state my body was in when I woke up every morning/afternoon/evening I thanked the Lord for letting me see another day, I was one step closer to having the healthiest body I could ever dream of. I had to constantly tell myself, “You have the strength of a warrior to get through this”. If I’ve learned anything it’s that you have to have gratitude every single day and know that every single thing in your life happens for a reason! I feel that my reason is to share my story and help others know that you are not alone in this, your body is so amazing that you have the power to heal yourself!
My mood would get better every time I started to see new improvements in my skin and I was finally getting some sleep! I knew that although it was a slow process, I was healing and I was doing it for myself! I didn’t need any doctors help! How empowering is that!?
By the beginning of fall 2012, my skin had calmed down. It was still thick, leathery, dry and itchy but no oozing or swelling and super intense detox/withdrawal symptoms. I got through the winter pretty well….a few bad break outs here and there but nothing as intense as in June. Spring 2013 brought back some of the old symptoms I had felt before, ironically at the one year mark of my healing process. It was another round of detox, not as intense, and off and on (as your body repairs itself, each flare up won’t be as extreme and as painful as the last). Ironically again, I experienced a severe break out on my feet and legs around the exact same time as I did in June 2012. This process didn’t last as long though, not 6 months like in 2012, but just a few weeks! For the duration of the summer I would go through the healing crisis off and on many times. Every outbreak would occur with an agonizing period of oozing and a bit of swelling, then dry and flakiness. I looked forward to the dry stage because at least I was more comfortable, able to sleep and be productive during the day.
I made a big move at the end of summer 2013 to New York City (I was living in North Carolina at the time with family). Just the stress alone set me somewhat backwards and had my skin experiencing a slightly intense healing process. It took its time to calm down and I ended up being back to my productive self at the middle of October of 2013. I’ve realized that for some reason for me, this process calms down in the winter and flares up in the summer. I was able to enjoy being back in my favorite city, reuniting with friends and even holding down a job. My skin went through another round of healing in the middle of May 2014 and has been recovering into the summer. This break out was mainly on my feet and legs, leaving me unable to wear shoes and sometimes even walk comfortably. This was a slight set back giving me no choice but to take a leave of absence from work. I knew that my body needed this time to heal with no obligations and in the most stress-free environment as possible. This flare up left me homebound from the middle of May well into July. When I would experience good days, I’d be able to leave my apartment for a short while and get my errands done. As I write this, it is the beginning of August, and I’m seeing a big improvement as the symptoms taper off.
The most concentrated areas now are just my legs and feet (sometimes oozy and flakey), and my arms and hands are still slightly rough and somewhat thick. I realize this is because the detoxing has to go through your extremities. Literally from the top of your body down to the bottom and through your hands and feet. Parts of my body (my torso, neck, face and upper arms) are so silky smooth that I barely have to put moisturizer on! After college and during my chemo treatments, my skin had gotten so dark. My complexion was no longer light brown, but this odd brownish gray color with red blotchiness coming through. This was due to the medications that had built up in my system and inflammation. Thankfully I’m seeing improvements in that as well, my complexion is evening out well, and my natural skin tone is coming back.
This topical steroid withdrawal process is not an easy one. Sometimes it takes all of the strength that I can muster up to just do normal tasks like make some food for myself or take a shower. It challenges you not only physically but mentally as well. You control your thinking, and if you have a defeatist attitude then it will be even more of an uphill battle. I’ve learned that the only way to get through it is to embrace it, know that you are going through this because it is the only way to a healthier you. Know that it will end sometime… and that not everyone heals at the same time. I have many years of toxic drugs built up inside of me and my body needs time to repair. If you just believe that you can heal, be patient and feed your body all the great things that it needs, you will be eczema free in no time! This process has made me so in tune with my body and so respectful of it. I’ve made a complete lifestyle change, not only so I can get through this hurdle, but so I can maintain amazing health in the future! I see healthy and completely restored skin in my future as well as yours!
Thank you for taking the time to read my lengthy story 🙂