4 Years Topical Steroid Free!

Yup, you read that title right… March 2016 marks four whole years that I’ve been topical steroid free! It’s pretty amazing when I look back at all that I’ve endured, physically, mentally & emotionally. This post is kind of bittersweet because on one hand I have nothing but gratitude in my heart that I’ve come this far but on the other hand I wish I could be writing this saying that I’m completely healed and back to my normal life. Now this isn’t to discourage anyone…healing DOES happen. In my case it’s taking awhile. If you’re new to my blog I think it’s best for me to give some background of my history. I used topical steroids from 10 months old to 26 years old. I also had injections of (I believe) triamcinolone into my hands and feet multiple times. I was diagnosed with stage 3 Hodgkin’s Lymphoma in 2008, which I underwent 6 months of chemo twice a month (it’s said chemo has a half life in the body up to 10-12 years!). So needless to say I’ve had A LOT of toxic build up in my body, hence my lengthy withdrawal. Buuuut I’m apparently right around the time as far as healing times go. Supposedly for every 7 years you’ve used TS you will go through a year of withdrawal. So although actually 28 years of usage would equal 4 years of withdrawal, I’m not too far off, plus I have the “added bonus” of injections and chemo 😦 . Everyone is different and depending on your usage and potency you may have a shorter or longer healing time than myself, so don’t be alarmed by my lengthy healing time… you may restore faster than me, it just all depends.

I’ve had the most difficult time during my withdrawal on my legs and feet (mainly my feet). If you’ve checked out my extensive documented photos you’ll see it’s full of my feet lol. It’s funny because before topical steroid withdrawal I hated my feet. They were too big to me (I wear a size 10 shoe and I’m 5’5″) and I’d always wish they were smaller, plus I have fairly long toes. Going through this experience has given me such an appreciation for them. When they are inflamed, oozing and aching it’s agonizing walking on them and standing on them and forget about putting on shoes! The state of my feet have been the main reason why I can’t do much, get out and about, wear shoes, and stand on them long enough to do simple chores without experiencing pain. Needless to say, I have an insane appreciation for my big feet now, so much so that I lovingly talk to them and kiss them so that they will heal. ❤

Currently the state of my skin is pretty good, praise God! Like I mentioned before, I’m not back to normal life just as yet because of my feet that are still repairing, but each day is a day closer to being fully restored, and I know this won’t last forever… I have waaaay too much life to live and things to do! I always say this healing time is just a fraction of my life, so enduring for a few years will be so minimal to the rest of the awesome life I have to live and take advantage of. My legs have seen a great turn around from just a few months ago to where they were an oozy mess (sticking to my bed sheets at night and all that) to now ooze free with just some dryness and thickened skin to smooth out. My hands are slowly smoothing out, and the stubborn raw spots in between my fingers are finally healing fully. They’ve been in a state of barely clearing up and getting itchy and irritated whenever I’d get them wet. My torso, upper arms and thighs are still smooth… these areas had seemed to become really smooth quickly and have managed to stay that way. I don’t really get itchy on these spots, and sometimes I barely need to moisturize these areas. I’m still dealing with some discolouration, but I know this will even out overtime and honestly I’ll deal with some discolouration over oozing, painful, itchy, tingly skin any day. The essential oil cream that I”m using will help with evening out my skin tone, as well as making sure I get adequate amounts of sunshine. The “elephant skin” on my knees and elbows are smoothing out, and I just need that thickened skin on my hands and spots on my feet to do the same. My face thankfully was never terribly effected during the withdrawal process. I have experienced oozing spots on my face, ooze on my ears (in them sometimes and in the folds), and insane itch on my forehead that left it discoloured but has evened out, and that awful red hotness that many experience on the skin, but it hasn’t been the worst area like my feet have been. I’ve found that oil pulling really helped me in clearing up my facial skin and I’ve been working on doing it more consistently these days to clear up some roughness I’ve been having on my face. I have had some thinned eyebrows though from scratching them like crazy… but I’m working on growing them back in nice and thick with castor oil. I do have some thickening around my eyelids still in need of repair, and have found myself rubbing my eyelids more often these days most likely due to the pollen. My feet are the only areas that are slightly raw, with thinned skin and thick skin in parts. They still get flaky, but I’ve been seeing healing more and more just in these past few weeks. I still experience the achy, tingly sometimes throbbing feeling in them if I’m standing on them for too long or if they’re just going through another flare cycle, but honestly these past few days I’ve found great relief from those symptoms!

During this TSW period I’ve been able to have breaks from flare ups in the fall/winter months and unfortunate home bound flare ups during the spring/summer months. This lasted for the first two years. It’s sad to say, but the last time I lived “normally” (holding down a job, getting out and about and having fun and traveling) was in spring 2014. Since May of 2014 hit my skin took a decline and I had to quit my job and nurse myself to health at home. Since then (in September 2015) I’ve relocated from NY to FL and have been staying with my loving mother who’s been my rock through this whole process. This stress-free environment, fresh air and sunshine has helped me a lot.

I wish I could be writing this post as a declaration of my amazing fully restored state. Although it’s not the case… just yet… I KNOW it’s on the way soon enough… hopefully much sooner than later! I’ve faithfully trusted in my body through this healing process, and given it all the wonderful nutrients and love it needs to aid in withdrawal. I’ve been in this hell for long enough, and it’s time for it to end. I’ve seen my body transform, in texture, colour and even in the mass amount of shed skin. I truly feel like a butterfly emerging from a cocoon as corny as it sounds. I’m forever changed by this experience, and as I’ve said before throughout my blog, I will never take my health for granted again. My body is my temple, and I’ve learned so much through this process on natural healing and sustaining a healthy body. I’ve also learned to never underestimate the body and how it’s self healing… it knows exactly what steps to take to restore and repair… no drugs are needed! Only love and care.

I hope this life update encourages my readers to stay faithful in your body’s healing abilities. KNOW that healing will happen, it may not be in a few months or a year, but it WILL happen. Always remember the body didn’t accumulate all of the toxicity overnight, so it will not take overnight to purge and restore it. This journey isn’t about “quick fixes”, it’s about getting in tune with your body, and dealing with all of the physical, emotional and mental detoxing the body must go through. It’s about seeing just what you’re made of and KNOWING that no matter how hard it gets you CAN endure it, and after each battle you are stronger than before. I’ve been in the deepest darkest hole at times, sometimes to the point of suicidal thoughts, but I never let the words come out and manifest. I never spoke them into existence. I would always look ahead to the future and keep the faith (as difficult as it may have been) that “this too shall pass” and everything is for my best benefit, all the hurt, and pain is not meaningless! Remember “NOTHING IS WASTED”. Every experience is for a purpose, we may not see it or understand it in the moment but we will soon enough. For me, it’s shown me how to better take care of my health, shown me my purpose… helping others to heal their illnesses (I hope to be an eczema health coach of some sort one day and use my journey to help others), and has overall given me more understanding and compassion. This experience is so unique and I feel so connected to all of those whom I’ve come in contact with going through this process. We are true warriors and have been forever changed. So please hold on tight, don’t give up and TRUST in your body and the strength that you possess to get through this!

Much Love,

Jen ❤

WHAT I’VE LEARNED IN FOUR YEARS OF TSW:

• My emotions would overwhelm me, and honestly they still do sometimes. I’ve found that just releasing it all in a good old crying fest helps. I’d just scream and cry if it was all too much, calm myself down and end up taking a nap from the exhaustion of my emotions taking over. After time of always being angry at my situation, I just got to a point where I had to surrender it all. I literally left it all up to God, prayed and let my worries go. I think when I finally came to terms with TSW and all of the hell that I was going through, I realized that it was out of my control, and my body was going to do what it needed to do in it’s own time (all I could control was my attitude in the situation, staying faithful, feeding my body good nutrients and try to get enough rest). Not getting depressed over a flare up after having a clear period and just “rolling with the punches” actually started to keep me sane. I realized I just need to deal with whatever new symptom my skin wants to throw at me. It sucked, but I just had to deal and KNOW that it will clear and possibly break out again… it is just apart of the healing crisis. Always remember patience is the biggest virtue to have through this.
• Not everyone will be your biggest supporter in this. I haven’t personally had people tell me I’m crazy for doing this or sway me to take the medication (that put me in this situation in the first place), but I have had some people in my life who weren’t always there for me showing their support, or took the time to really understand what I’m doing. You kind of start to realize there are people who will always check on you and see how you’re getting on, emotionally and physically and there are people who kind of just forget about you. Not sure if it’s an “out of sight, out of mind” thing or what, but I’ve experienced that feeling of being forgotten and lonely. Through this I’ve learned some people’s true characters as well as the fact we’re all humans, and it’s not usually our natural instinct to look out for someone else, we’re incredibly flawed, selfish beings and I can’t be too mad at anyone who won’t be my cheerleader. All I can take from this is that I need to be the person who does reach out, care and show my compassion.
• In saying that, on the other hand there are some people who will show you their compassion and support. I have “met” so many warriors through my blog, the Topical Steroid Withdrawal-Red Skin Syndrome Support Group on facebook (please join if you are going through this or are a caretaker, the support in that group has helped me not feel so alone as well as many others tremendously!), and the ITSAN forums whom I’ve connected with and have become good friends with. I would love to travel the world and meet them all in person some day. So many people who I’ve never personally met have sent me their love, empathy, blessings and even support with my GoFundMe campaign it’s been pretty amazing. Just receiving their kind words gives me the strength I need to keep on pushing through.
• Having feelings of jealousy and envy are something that I’ve dealt with especially at the beginning of my TSW, and although I don’t deal with it as much as before, those feelings can still arise. I would be so angry that I was going through such agony with my body, like it was attacking me and that other people were living their normal lives without a care in the world. I’d be upset that the most mundane chores that most people could complete with no problem, would take me forever and cause me such pain. I was depressed that others were living their lives, having fun, dating, getting married, having new experiences, progressing in their careers and traveling and I was stuck at home just trying to get through the day, minute by minute. As I mentioned before, it wasn’t until I had my “just surrender it all” epiphany did I really learn to put those feelings aside. I had to come to terms with what I was going through and although it was horrendous, that it wouldn’t always be this way, that “this too shall pass”. Instead of being angry that these people were having a good ol’ time, I told myself to be happy for them and I looked at their experiences as something to aspire to in the future… “I WILL visit that island one day” , “I WILL take beach photos” , “I WILL wear cute clothes & shoes and be comfortable in them” , “I WILL date again” etc etc. I also would tell myself although their lives may seem perfect, you truly don’t know what they may be dealing with on the inside or behind closed doors. TSW may be hell, but at least it has taught me the importance of maintaining a healthy body and how important it is to take care of this temple that I have. There are many people in denial of whatever illnesses they may be dealing with, and may not want to take better care of themselves or think that it’s not that important and push it to the side. Having topical steroid addiction forces you to take better care of your health… a blessing in disguise.
• Lastly, I’ve learned to never underestimate the self healing power of the body. I’ve gone this whole 4 years without any medication… not an asprin, or antihistamine. I’ve relied only on food and essential oils as my medicine. Even when I’m in an oozy state, I trust in my body and let it ooze, dry and crust on it’s own, I don’t cover it up with bandages or creams, I just let it do it’s thing. I’ve learned to listen to my body and give it what it needs at the right time. If I can get away with moisture withdrawal then I do it, if I need to apply moisturizer than I do it and when I need to rest I do so. It takes time to repair the body, but I know that it is doing all that it can to do so, even when it may seem like I’m taking 2 steps forward then 2 steps back. I’ve learned healing won’t be a straightforward thing. I will have ups and downs, the body just needs the energy and rest to clean house at the right time and all I can do is trust in it.

A great quote from my health coach:

Natural healing is never a straight upward movement. Rather you can see some good healing signs and then that may stop and you see a period of stagnation and then another period of moving forward and perhaps another period of going backward a few steps and then moving forward again until the final healing takes place. It’s hard to figure out why the body does things the way it does sometimes. But the truth is the body never makes mistakes. There is always a reason why things move backward in the healing process. We may look at it as backward movement, but the body looks at it as a way to clean house further.

THINGS THAT HAVE HELPED THIS PAST YEAR:

• Essential Oils – The DIY cream and lotion that I’ve whipped up has been great in helping my skin repair and restore. Before I was using just coconut oil, shea butter and jojoba, but now with the added essential oils it’s helping it so much more because of the healing properties that it has in them (anti inflammatory, regenerating skin cells, evening out skin tone, taking down the itching, and anti bacterial properties to name a few). Diffusing the oils has helped to keep me in a calm state and has helped with getting me to sleep. I think one of the game changers was applying frankincense oil to the bottom of my feet when it was throbbing and tingling (it is a natural sedative) as well as ingesting a capsule of oil of oregano and frankincense at night to help take down the oozing. When I took this capsule within days I noticed the amount of oozing on my legs was decreasing. Oil of oregano is an natural antibiotic and great for staving off infections. I’m all about essential oils now since it’s plant based medicine and all natural. What ever aliment you have, there’s an oil for it! You can find the essential oils I use HERE.
• Water Fasting – I’ve found that each time I water fasted my skin improved. I found that it became softer, I’d shed a lot of skin through the fast which was great for me, minor irritations like raw spots would heal up and any oozy spots I was experiencing cleared up pretty fast. I highly recommend water fasting for at minimum 3 days. The benefits of letting the body rest and use the energy that it otherwise would use on digesting towards repairing the cells is so worth giving up food for a few days. Check out my experience & more info on the process HERE in a previous blog post.
• Hydration, Hydration! & Diet – I would always make sure that I was drinking enough water, but when I started to increase my amounts even more I noticed how much more my skin felt hydrated. It’s a simple concept to just get in more liquids during the day, but for some reason I’d neglect to do this and then wonder why I was feeling extra itchy and dry. Eating a lot more fruits has helped with hydrating my skin as well. I’m vegan, and it wasn’t until I went raw vegan for a month and half did I really see the benefits of eating more fruits. Fruit is amazing at healing and hydrating the skin. While I was raw I ate a lot more fruit to keep myself full and carbed up and the benefits were unreal! I experienced even better digestion, hydrated skin, a feeling of lightness in my body and lots of energy. I highly recommend eating healthy in general but definitely during this process. The body needs wonderful nutrients to use to repair. Plant based foods give the cells oxygen and energy it needs to heal. Alkaline foods are the way to go, and I’ve learned that sticking to a whole food vegan diet works best for my body. The body is made up of the nutrients that you give it so make sure that it’s foods that will aid in healing and not halt healing. Acidic processed foods, and foods that take forever to digest (animal proteins) will burden the body. We have to remember that the body needs energy to heal, and having all of the energy spent on digesting foods for hours and hours doesn’t promote restoration. I’ve also been drinking a glass of fresh pressed celery juice first thing in the morning lately (along with my turmeric lemon tea and breakfast of fresh fruits and smoothies). It’s a great way to alkalinze the body, give hydration to the cells and ease the digestive system. I’ve found it to be great at doing all of these things for me. I’ve noticed that right after I drink it I feel more hydrated.
• Not Showering – At the beginning stages (first 6th months) when I was oozing all over and such, just the water hitting my skin in the shower left me in such agony. I’d have anxiety before going in the shower, cry throughout it and for like 30 minutes afterwards. I got away with just washing up “the important parts” and letting the rest of my skin do its thing and heal on its own. It was super effective and kept me from being in pain. These days showering is less painful, but I still will only shower every other day. I ended up using these shower boots made for people with leg casts to protect my legs and feet in the shower, and these helped tremendously. Recently I’ve noticed when I’d go a long period of time (3 days or up to a week) of not showering, but just washing up “the important parts” my skin would be noticeably smoother and calm. I’d use a washcloth just to rinse off my arms, torso and legs and this was sufficient enough. When I do shower fully, I use African Black Soap which I’ve found nice on  my skin. I think most people with eczema will benefit from not showering as often and just letting their skin do its thing. It’s all about what works best for you and listening to your body.

These photos are with no moisturizer on….