The Pain

This blog post is long overdo. I don’t know what exactly has been holding me back, the PTSD of it all? The anxiety? Or maybe the fact that I am still in it. Needless to say it has been a rough couple of years. I have experienced pain like I can’t even describe. This isn’t like getting hives. This is much much worse than that. This type of pain prevents your body from being able to move. The tightness of your skin makes it difficult to move at all. The redness makes your skin feel completely raw, almost like a burn victim to the point where even air blowing on your skin is excruciating. The itchiness can drive anyone to the point of insanity. And the dryness, well lets just say waking up to skin all over your clothes and sheets every single day is not only disgusting, but absolutely painful. No one can truly know this hell, until you have experienced it. Have I had suicidal thoughts through this? Depression? Panic Attacks? Yes to all of it.

What is Topical Steroid Withdrawal/My STORY

One of the hardest parts about going through Topical Steroid Withdrawal is the controversy behind it. Many doctor’s aren’t acknowledging it. It’s not being researched, and the very cause of it is what Doctor’s claim will “fix” it. I have been using topical steroids since middle school. It wasn’t anything excessive and I was using one of the least strong topical steroids out there hydrocortisone and triamcinolone (the same steroids a doctor prescribed my 9 month old baby). Soon after I got married almost eight years ago I became extremely itchy all over my body. It was then that I started consistently applying the triamcinolone all over my body in order to maintain the itch. About 8 months after doing this we had finally figured out I had a staph infection, but after that my body almost relied on the topical steroids to keep the itchiness away.

Fast forward 7 years and the redness started to appear. I started getting really itchy on my face. It hurt so bad and I wasn’t sure what was going on. Suddenly the steroids I had been using were no longer affective and when I visited dermatologists they kept prescribing me stronger steroids to try. That would work for a minute, but as soon as I weaned off of them the redness and extreme itchiness would occur. I felt like the steroids weren’t good for me long term and I stopped using them. That’s when the real pain started. My skin turned red and I was so itchy that I was up all night every night sobbing, twisting and turning and screaming. Nothing helped. I saw doctor after doctor and they simply would claim it as dermatitis, but I knew this wasn’t just “eczema” it was insane.

Mental Pain

At first I wasn’t that red. I sort of looked like I had just spent a little too much time in the sun. This part though, was the most difficult mentally. No one really took me seriously during this time. I wasn’t very dry yet, but I was experiencing the most itchiness I had ever experienced before. Doctor’s sort of treated me like I was being dramatic, my family couldn’t understand the extent of my pain, and my husband thought I was taking advantage of him (his words) as I laid on the couch most of the time trying not to move. My girls were struggling as mom laid on the couch or in bed most of the time, and I genuinely felt like a burden to my family and everyone else around me. To be honest, I was not fun to be around. I wasn’t happy, I was hurting. I experienced episodes of depression for the first time and thoughts of suicide came to my mind. It was dark and heavy. The future was unknown. The crazy thing about this time period though was a couple of months later the pain of my skin started to visibly appear, it was then that people started to care. That taught me something about mental illness, how hard it is. People can’t see when you are struggling. They don’t know the pain you are experiencing because they can’t see it. That part was the worst.

Physical Pain

The physical pain started to get worse, but at this point I had started to share my journey on instagram. That helped. Opening up about my experience on social media helped me mentally and made me realize how many people I had rooting for me and praying for me. I would try to share updates about my journey on my personal instagram page. I helped me to show up. It gave me people to “talk” to. Then, I started to connect with other people who had been experiencing similar pain. I connected with people who had the same symptoms as I did! I helped to give me hope. Helped to make me believe that one day I would in fact get over this. It also helped me to be able to empathize for others and others for me on a deeper level because they have also experienced similar pain. I wondered, “Why is this not talked about more often? I have found thousands of people with cookie cutter symptoms to mine. Why isn’t the medical field an advocate and voice for people who are suffering so intensely that suicide is frequently on their mind? Why isn’t this researched more with all of these cases?” Finding ITSAN helped. I watched a video and bawled finally feeling like others were voicing the exact feelings I had. I was a mom of three girls under 4 for heaven’s sake. I needed help, and every medical professional brushed me off.

Dupixent

Finally I found a doctor who tirelessly researched for me, spoke to colleagues, shared my photos and case with medical professionals (with my permission of course). He was an angel. If anything he let me know that someone in the medical field actually cared about me. He said, “If I had a magic wand and could heal three people, one of them would be you.” He cared. DOCTOR’S please be more like Dr. Del Rosso.. He was genuine, and I could see the heartbreak he felt for me. Eventually he felt like he did everything he could do and passed me on to another doctor. That was hard. I felt like he quit on me, but my husband who always helps me to keep perspective (bless him) reminded me that Dr. Del Rosso sacrificed so much time and energy in and outside of the office for me.

During my time with him I finally got on Dupixent , a medicine that I heard great things from. I was trying to get Dupixent for 9 months prior to Dr. Del Rosso. I thought it would be my answer. I heard amazing things and was sure it was going to “cure” me for a time. It’s such an expensive drug however that my insurance never did approve me. That was a frustrating process. Eventually Dupixent let me have a free year. I was so happy. I thought this was it….but then it wasn’t. I had a reaction to the medication and my eyes would ooze. The ooze from my eyes burned my skin. My vision was blurry and I was in so much pain. If the regular self injections weren’t painful enough the reaction on top, was awful. This was another low point. I don’t know why this happens in life. You get hope that “this is it”, “once I do ____ I will be healed. Life will be better.” And then everything comes crashing down. I think it’s God’s way of testing our faith a little further. The fact is we all face challenges in life, but will we let those challenges take us to God or away from Him? I prefer a life with Him. So I prayed. I prayed hard. I fell on my face on my rug in my bathroom, looking at the flakes of skin that were white on that dark red rug all around me. They haunted me. My body felt so weak. I begged God to take it away. I begged God to heal me. I told God I had the faith to be healed, I knew I did.

“Do You Have the Faith to Not be Healed?”

Earlier on during this process, I was so scared. I was constantly told the same thing by doctor’s, “Just put this steriod on it. It’s eczema.” They weren’t listening to how this was so different than anything else I had ever experienced before. I went to the Boise, Idaho temple with my brother. I was sobbing. I told him I had the faith to be healed. Then he asked, “Do you have the faith to not be healed?” Man that hurt. I paused for a minute. Took a deep breath and said, “yes”. I didn’t want to say yes. Trust me. I didn’t. I didn’t want this. I didn’t want to tell the Lord I was okay with it. But I knew deep down that I was stronger than my fear. I knew that if that was the Lord’s will for me, then I could live with it forever. It wouldn’t be the life I pictured, or necessarily wanted, but I knew I would do it. So I left that day still not sure of the future, but a little more sure of my inner strength.

I think saying, “Thy will be done.” and still having moments in prayer saying, “Father remove this cup from me” can be done in the same breath. It was done in the same breath. Jesus suffered so much so that he asked for his pain to be removed in the Garden of Gethsemane. A God, trembled because of pain, and asked for his pain to be removed. So again and again I would fall on my face in cry “Father please remove this from me, BUT IF NOT, help me to know what to do next. Help me to find something that can bring me a little more relief.” And that’s what he did. He was my ultimate source of peace. I was in so much darkness, but simultaneously closer to MY God than ever before.

“How Can I?”

I remember one prayer in particular during the month of September 2019… Well, first let me preface with this. I was in bed the entire month and could barely move. My mother in law flew out from Utah to take care of me and the girls, and the other weeks someone from my ward would pick up my girls in the morning and bring them home when my husband got off work. It killed me that they started to love going with her. It killed me not playing that mom role. It killed me knowing that, that was best for them. But, how grateful I am to Melissa Yeates for doing it (oh by the way, she has 8 kids of her own and added my 3 to the mix). I have told her time and time again, and will never stop telling her what an angel sent from God she was for me and my family at this time. During this time I was home alone. I prayed out loud, “Heavenly Father, I desire to be thy servant, how can I when I am restrained to the walls of my house, even the walls of my bedroom? I desire to share the good news of Jesus Christ and the gospel. How can I like this? I desire to open my mouth and be an instrument in thy hands? How can I if this is how I have to live? How?” I don’t hear words so vividly in my head as I did this day. Immediately after I said that prayer this is what I heard, “Oh RyLee, THIS IS HOW.” And then I sobbed. I knew it was going to be longer. I knew I had to endure more pain. I knew it was going to be awhile, if not forever.

MIRACLES

I honestly can’t even name the many miracles I experienced during the hardest time of our lives. This condition tested mine and my husband’s marriage a lot (You can hear more about my husband’s perspective on this podcast we were able to do together here). But here are a couple of miracles I wanted to share. During all of this I was frequently sharing my thoughts on my personal instagram page (at the time it was a public account). I shared my pain, I shared my faith, I shared my Jesus. Many reached out to me and told me that my words help them have greater faith in Jesus Christ, but one person in particular asked me a simple question about my faith. Our conversations continued and she wanted to learn more. Ever since that time in March of 2020 I have been able to meet with her and her husband over zoom with the missionaries of our church. She has expressed how it has helped their marriage and their home life meeting with us. She found me through instagram. She related with me because of my pain. “Oh RyLee, this is how.”

Here’s a crazy part of the miracle, I was in so much pain, I reached out to everyone I possibly could, strangers, friends, family, neighbors and asked everyone to pray and fast in my behalf. I had over 7,000 people like and comment on my plea for prayers over social media. The day after the fast and prayers of so many strangers, my redness started to fade. I know God heard all of my previous prayers, but I also think he was waiting for me to call upon all of the Earthly angels I could. There’s power in prayer, and there’s power in numbers. I started healing right around the time I started meeting with that girl from instagram and her husband. Now I don’t know if I had to suffer all that I did for those TWO people, but if I did, it is a testament to the worth of souls being great in the sight of God.

Today

If you have stuck around this long, you’re amazing haha. It’s hard to shove these life changing moments and experiences into a blog post. Needless to say, this is the condensed version. Today I still have flare ups. My skin is extremely sensitive to the point that even aquaphor will burn through and make my skin raw and bleed. Truth be told my skin doesn’t really like anything on it. Today I am still on a strong dose of Cyclosporine (300mg a day). Although this has brought some anxiousness with COVID-19, my new doctor feels its best right now, and its been nice to feel a little more normal again. The future is still unknown. Maybe I will have to deal with some form of this for the rest of my life, but I give myself more grace. I slow down when I have flares. I take more time for myself during those times, and play hard with my girls when I feel better. Overall I have so many things to be grateful for because of this skin condition. My perspective on life has changed. I’m less anxious about things that don’t matter eternally. I enjoy good health days more. I know God loves me and is mindful of me and my family. Through this experience I have more empathy for those suffering with chronic illness, those being stuck at home, mother’s who can’t take care of their children, those suffering from depression, anxiety and the darkness of suicidal thoughts. I know what it’s like to be served, and have been taught how to serve. I know God can use you right now regardless of your situation. This life is a small moment, and our job is to be the best version of ourselves we can be. Push forward with hope, faith and confidence in who you are and what you look like.

Products

Naturacure Ice Packs:

Whenever I feel itchy and am flaring, ice packs are my life saver! I wish I would have known this years ago! It’s also what I use when my daughters feel itchy. The cold helps to remove the itch and calm them down. A little TMI, but almost every time after intercourse I have to use an ice pack because I develop a rash all over, my poor husband has gotten used to immediately going down to the freezer and getting me an ice pack. These ice packs are my favorite because they are soft and flexible, unlike a lot of the solid uncomfortable hard ice packs on the market. Believe me when I say they are Heaven sent! (TIP: if you don’t love the material on your skin, put a pillow case over the ice pack so it’s softer.)

Nipple Cream

For some reason every other ointment out there bothers my skin, but lanolin nipple cream allows me to comfortably move whenever I am experiencing the pain of the redness. My normal routine would be to wake up, wipe off the shedded skin from my face (I know, gross, but you can’t even imagine the amount of shedding), and put on nipple cream. Once I had nipple cream I felt less pain and could take care of my. kids.

Cetaphil Cream

Truthfully I hate recommending creams to people because everyone’s skin is different. Believe me when I say I have tried almost every single cream/lotion/remedy recommended to me. My go to is still simply Cetaphil cream. At the stage I am now I try to go without putting cream on as long as possible in hopes that my skin will not rely on the creams, but will self moisturize. Another cream I have used often when itchy is Cerave Itch Relief (Warning: When I was extremely red, this one burned so bad and I couldn’t use it until my skin was better.)

Fingerless Gloves

I tried a lot of gloves that covered the fingers to help with the scratching, but for some reason they irritated me more. I liked wearing fingerless gloves for the sores I had on my hands and wrists.

Compression Sleeves

These bad boys are also a life saver! For some reason the redness is so painful that even air touching it bothered me. I typically would feel better if I was wearing a sweat shirt or some compression sleeves. (NOTE: wearing these at night would bother me more however, so I only would wear them when I was awake).

Sweats

Sweats are a must have! I literally lived in sweat shirts and sweat pants for the past year. I found that the tighter pants would irritate my legs more so the loose ones with some comfy socks were my go to. My favorite were from Costco, and unfortunately I can’t find them any longer, but any soft comfortable sweats will do, just make sure they aren’t so thick that you start to sweat… sweat is not a friend of eczema and this skin condition.

Probiotic

This probiotic from Olly is healthy and delicious! I usually can’t even take gummy vitamins because their so nasty, but you will thank me for these ones! Want to know a secret?! My husband had Covid! I know, we were scary people for a minute there, but I was so surprised the girls and I didn’t really get sick, especially with my suppressed immune system. We had been taking these probiotics (kids found here) for months prior to him getting sick, and I really believe it helped us. We all experienced some diarrhea symptoms but other than that the girls and I were just fine!

Tylenol PM

Now of course you have to be careful with this one. Especially if you are in constantly pain. Frequent use of Tylenol can cause liver damage. On the nights when I know I am extremely bad though, I take a dose of Tylenol PM. I tried all sorts of sleeping remedies and products, and this one was the only one that would help me get through the long painful excruciating nights.

I hope my story, and some of this information can help those that are also suffering. It’s not a fun club to be in. I’m sure its even a worse club to be in as a parent of someone struggling with Topical Steroid Withdrawal. Average time I have seen for people to over come this is 2-4 years. I still have a lot of unknowns, and fears, because I am still in it, but if you have any questions you can always ask. The physical pain and itchiness I have felt thus far in life is so excruciating that I can’t even fathom my Savior Jesus Christ feeling it for me as well, much less everyone else’s pain, sorrows and sufferings. He is my redeemer. I know that because he suffered I have an advocate with the Father. I love him. This trial has brought me closer to him, and for that I am grateful.