It’s funny to sit down and think as I write this how many times I have tried to give a “then and now” update. I have drafts from 6, 11, and 24 months in healing, but could never get everything out. Perhaps I’m too much of a perfectionist, but here’s to an update and a ray of hope for those of you following who are also facing Topical Steroid Withdrawal. While every now and then I have a tough day, I am light years better than when this first started. Wohoo!!
I had a phone call about ten weeks ago with a gentleman who has been going through TSW for six years. He had shared that going through Moisturizer Withdrawal allowed him to see some expedited healing, and he challenged me to try it. “You pretty much can’t leave the house for a month, but it’s worth it!” I’ve taken the halfsy approach of going from soaking every day to a couple of hours to skipping my soaks every other day. Some days, I am able to not soak for two days in a row. I chose to do it partially because I need to be out and about for work, and want to still challenge my body but be presentable. It blows my mind to think about how much time I have back to either sleep, take care of my house, or just kick butt in business. I just soak in hot water now for three hours every two days, put on a faint amount of our homemade lotion, and then I’m on my merry way! :D
Fortunately, as I have healed in the last six months insomnia has been pretty rare. I have noticed I am much more sensitive to caffeine than I used to be, and find that if I have coffee or an espresso after 2pm I’m almost guaranteed to still be awake at 3am. I don’t know if that’s normal for most people, but that’s my body for ya.
This still happens with me taking two Benadryl tablets and one 10mg tablet of melatonin, so I guess you could say we have a ways to go in that department. I’ve tried (accidentally) not taking the Benadryl and melatonin before bed and find myself lying wide awake wondering why my brain won’t shut off. This is the only medication I have to take at this point, which is a big improvement since it used to be a Zyrtec and two Benadryl every 4-6 hours. I’m really grateful be putting less stress on my liver. Overall, once I am able to fall asleep I rarely wake up until morning. At this point, I need 7-9 hours every night, or I’m in zombie mode. Sleep is still really important for my immune system and my skin’s recovery.
I am back to just avoiding gluten, eggs, dairy, and soy. Sometimes I cheat and may have something with small traces of milk or gluten, but most of the time I’m fine. If I have a reaction it’s usually small cysts/pimples on the fingers and palms of my hands.
I used to be SUPER sensitive to a number of foods, and would have itching within seconds if a food was not friendly, or high in producing inflammation. With the super strict diet I was on, I got down to 123 pounds at one point, and have since then fluctuated between 135-140 depending on how much friendly cookie dough I’ve bought recently. I’ll more than likely revert back to eating more healthy/strict in the coming months because I really liked how I looked and felt, but it’s been nice to have certain foods (or their friendly version) for the first time in a long time. * Hello, gluten-free onion rings! * :)
I do notice when I have had items with a lot of sugar or are processed, even though they are considered “healthy”, in the way my body feels as its digesting them. My joints will feel swollen, I’ll feel bloated or sluggish, and may have a hard time focusing. If I’m good at keeping my sugar intake down, have a salad, and a lean meat, my body feels amazing and it’s like there’s some type of jet fuel. Maybe that’s the coffee. You would think I would want that on a regular basis, but I’m still getting all the food that I’ve not been able to enjoy out of my system. I don’t think it’s necessarily a binge, but it’s been nice to feel free to eat what I want for a change. Some of the weight gain I think has also been because we think my metabolism is normalizing.
When TSW was intense in the early days, my calorie intake was INSANE. I could eat a whole plate of veggies, a large baked sweet potato, and a massive steak, and may still have room for someone’s leftovers. Then in three hours I’d be hungry again and have more protein. I wouldn’t have a problem gaining weight because my body was burning it off so fast in trying to heal itself. The weight would fluctuate 5-7 pounds every week, sometimes be 3 pounds different in 24 hours. I don’t know how common that is, but I know it’s taking a lot more effort now to drop pounds than what it used to, though the complex sugars might have something to do with that. :)
Oh boy, how this is a joy to write! I’m super grateful to say that outside of ten to twenty minutes a day, I rarely have “zingers” anymore. These were super common, like waves, every hour, when TSW first began. The itch wave would hit and it would be all over my body, feel like it was right next to the bone, and it was hard to do anything until it passed (often a half hour later). Now, if I get an itch it’s usually very brief, and I move on with life. It’s great to be able to sit down and write a thank you note without worrying about my penmanship because of itching, or just in general not have to worry about it.
The only time I itch daily is usually when I’m trying to go to sleep, which is the ten minutes I mentioned above. My wrists and hands are one of the areas still taking a bit to heal. The TSW’s flare, or patch, has gradually receded as I’ve healed, and I’ve noticed when I itch at night it’s usually the edge of the patch that itches the most. My wrists, where my palms meet my forearms, and in between my fingers are where I still get “zingers”, but they are very brief compared to what it used to be. Part of me wonders if because there are more bones, or joints, in my hands if that’s a reason the “zingers” occur in those areas. Like what if the toxins are taking longer to release because of the joints? I probably just gave someone with a medical background a good laugh because I have no idea, but that’s the only logical explanation I can think of outside of the skin on the hands being one of the highest areas of absorption on our body. My idea may not also work because you could say the same about the feet, but my feet gratefully don’t itch anymore so who knows.
A couple of people in the ITSAN support group have mentioned that your liver tends to detox around 11pm, so it’s possible that’s what’s going on? Anywho, itching is way less and I’m a fan of that.
Skin / Patches
I pretty much only have the patches on my face, neck, back, hands, and barely on my forearms. Everywhere else has normalized, and I am more white than red these days. The shedding has pretty much resided to just those areas, but most of the time what is the worst is my face -which is super light compared to what it used to be. The shedding has gotten to be significantly less and overall I’m able to wear black in public without feeling embarrassed. Major win!
The weeping/oozing has pretty much stopped all together. (Hallelujah!) There are occasions where my eyelids will weep at night, but it’s seldom and usually stops after a few minutes. The splits have also healed for the most part all over my body: only my hands, wrists, and mouth still have some, but they aren’t as deep as they used to be and usually heal within a couple of days. Keeping my nails cut short has also been a big catalyst with them healing.
I never would have thought that things like getting dressed would cause so much anxiety. Women have to wear bras, which typically have exposed elastic bands that with my skin being super sensitive caused it to be really irritating. Cotton lined bras have made doing life so much more enjoyable. I honestly couldn’t figure out why I would avoid going out in public two years ago if I was able, and it turns out that often the clothing I had to wear was uncomfortable for the season. (If you know me well, you know I don’t normally wear activewear in public.) I’ve been wearing as much cotton and soft fabrics as possible, or professional clothing that doesn’t feel like a straight jacket so my skin can breathe. Making this adjustment and being prepared for how my skin will react with the weather or temperatures has really helped set me up for success when I’m away from home most of the day.
The lotion we make from scratch has taken longer and longer in our need to have to make more each month. This is a great sign as it means I’m using less on a daily basis. On days I skip soaking, I try really hard to not put any on to help my skin learn how to moisturize itself. This means I’m really only putting a thin layer of lotion on when I’m done with the bath, and only if I have to after that. We think that the diet and the lotion are the two biggest reasons why my healing, outside of recently doing the moisturizer withdrawal, as been able to progress as fast as it has.
By God’s grace and slowly but surely, I have been able to come out of the dark days of TSW still growing my real estate business, and am now in a season of thriving with my clientele. Through this journey, it has not been easy to manage and to know how much to share. Now that my day-to-day is both predictable in schedule and in my body’s in a stable position where I know how it will respond, life is much much better. I’m on track to sell over $5 million this year in production, and have a big goal of selling $10 million not because I want to either make a lot of money or have bragging rights, but because I just want to be excellent at what I do and help a lot of people.
Not being able to perform the way I wanted and feeling like I missed opportunities was really hard to get over. I had to say no to an incredible academy training for Indianapolis, but I wasn’t confident my body was at a point that I could handle the commitment. When I remembered that God doesn’t withhold any good thing from us, it made it easier to accept. Does that mean I lean back and not try to get better? No. But it does mean understanding your limitations, and embracing how you can make the most of where you are at right now. There are so many good relationships and opportunities that I have now that TSW gave me both the character and backbone to build by God’s grace. Recognizing that there is beauty and opportunity provided in this season that won’t be found anywhere else in life has helped me look at things with optimism, even though the circumstances have not changed.
Negativity / Anxiety
I have tried to distance myself from negative people, gossips, or people that just drain my energy, and it’s been wonderful. That doesn’t mean you should surround yourself with people who don’t speak the truth or keep it real, but the relationships you have should be lifting you up instead of tearing you down. The people you choose to surround yourself with shouldn’t make you feel worthless or like a failure. While that might be common sense, sometimes we can become like a frog in a pot of boiling water. We can let others bad behavior or toxicity be acceptable because “that’s just who they are” when -like it or not- they are still affecting you.
Topical Steroid Withdrawal taxes so much of your body’s energy, that you quite literally don’t have the bandwidth to deal with drama. All I can say on this is that I have learned to set boundaries, have clear expectations, and don’t be afraid to over-communicate. What you allow to influence you is critical. My dad used to say growing up, “You are like who you are around.” Choose those influences wisely if you have the option, or find ways to limit those you are forced to come in to contact with to influence you. Another way of looking at this is to be more selective about who you spend your time with. Not everyone on your Facebook friends list is a true friend. Sometimes you find out you care more about a person than they do about you, but the sooner you are able to audit and have healthy relationships feeding into your life, the easier it will be to heal both mentally and emotionally with all that TSW is throwing at you.
For the first six months of TSW, I looked like a lobster. Dark red, overbaked looking skin, that wasn’t uncommon for me to get comments from a cashier that I should stop using a tanning bed. (Bless their little hearts!) I used to be so nervous about going in public and was physically uncomfortable. I just wanted to do whatever errand I had to do in as little human interaction as possible and get back home to hide where no one was going to stop and pry into my life about why I looked the way that I did. Or try to sell me on their “miracle” product.
Now, I generally don’t care what others think unless it’s people that I know truly care about me. I know that the opinions they will have are to try and build me up, not tear me down, and that whatever thoughts they have are not because the way I look makes them uncomfortable.
Regarding anxiety, going through TSW has also helped me to become a better negotiator, and not freak out about problems with an event not going according to plan, or facing challenges in a transaction. When you’ve had your livelihood pretty much striped away, that perspective not only makes you grateful, but you get stressed about things a lot less than most do. One of my favorite movies, Bridge of Spies, has a quote that sums this up perfectly.
Q. “Don’t you worry?”
A. “Would it help?”
Working slowly but surely towards getting a sweat, but to be honest I’m still afraid. I’ve been able to take long mile walks and come home fine. However, when it’s really humid or I get hot I still get uncomfortable. It’s really risky to intentionally make yourself sweat with the possibility of causing a full-body itch, but I’m growing more tired of feeling like I have the strength of a toothpick than being comfortable with the excuse of why I’m not working out. Part of it is just getting in the routine and making it a habit. I’m well aware there are things like Pilates and Yoga that you can do that don’t have to create a huge sweat, but I like to be all or nothing. It’s hard for me to accept that not having a sweat is a work out, but sometimes you have to let go of what you prefer to hit goals and just take baby steps. I’m getting there.
Josh and I had a verbal conversation about walking the Indy Mini Marathon on May 4th, so we will see if that becomes a reality. I hope it happens, because I’d love to hold that medal up and feel like I kicked Topical Steroid Withdrawal in the face, haha.
My faith in Jesus has been tested in ways I never thought possible. Yet time and time again Christ has proven both faithful and victorious. Sharing my story and overcoming the fear of what others will think or judge me for has been put at the foot at the Cross and answered with living out the Great Commission.
I see this journey with Topical Steroid Withdrawal as a way to help give a beacon of hope to so many who are both battling it and in desperate situations. I’ve had people email me and ask questions because they or someone they know is going through it, and by having the courage to share my story it helped them. Some have been given hope and chosen to put their faith in Jesus, which has been amazing and such a beautiful thing to witness. I can honestly say that I am grateful to have gone through Topical Steroid Withdrawal because of the outcomes it has brought for others, and all it has taught me. If one person was led to Jesus because of how I handled this pain and suffering, all glory is to the Most High God. Because this broken, imperfect body is not to take credit for so miraculous and wonderful. It’s not by my own strength that I have been able to overcome and try hard things like skipping a day without soaking. Choosing to trust God and have faith is continually a hard thing, but I have found Jesus to always be faithful. He has never left and will always keep his promises.
Family & Close Friends
A special thank you to my husband, close family and friends who have helped me get through Topical Steroid Withdrawal, loved me unconditionally, and helped me get past the fears this condition has created. Thank you for being patient, giving grace, and helping me grow. Your kindness has not been taken for granted, and I appreciate having you in my life more than you know.
I hope that this update gives clarity from where things were when this first started in October of 2016 to today. Life is much more normal, and I can say with a laugh that I have never been so happy to be a pale! :D
Grace & Peace