10/20/16 TSW 2 years 17 days

I let the 2 year anniversary pass me by, 10/3/16. I’ve been in a funk. I believe I am in the midst of another anniversary flare. It’s hard to tell, as I still flare monthly with hormone cycles, but this month it has been more widespread than it has been for quite a while, and the skin that is not visibly affected is feeling tight and itchy again.

Currently I am struggling with depression and anxiety. I was convinced that I was well prepared for this process. I reminded myself often that this could be a process that takes years. The closer I got to the 2 year mark though, the more depressed I got. I haven’t even documented recent pictures, I don’t have the motivation.

Then vs. Now

What has changed since 10/3/14? Has it been worth it? Do I think I will ever totally heal?

I think to most people, the physical changes in my body since I stopped all corticosteroids are pretty obvious. My skin has healed so much it’s crazy. I went from open, oozing, burning, smelling flesh on an estimated 70% of my body to itchy reddish dry flesh on about 15% of my body.

Why so depressed then, that is huge improvement right? I am absolutely grateful for the healing I have experienced in the past 2 years. My depression and anxiety at least partially stems from my concern that I HAVE finished healing already, that my current state will be my forever state. I worry that I’m doomed to have skin flares for at least 2 weeks every month for the rest of my life. I believe that my body developed a sensitivity to progesterone after the birth of my daughter. The steroids caused a new issue to become worse, but were not the cause of my original eczema. How do you combat a sensitivity to your own naturally produced hormones? Why you treat it with steroids of course.  Or you don’t treat it with Western medicine at all.

No matter the end outcome, if my eczema resolves completely or I continue to flare every month, one thing I am absolutely sure about is my decision to cease steroid use. I was at a point that my eczema was continuing to spread almost daily. I truly believe if I had never found ITSAN I would be covered head to toe, out of work, and bed bound. 2 weeks a month of relatively calm skin is more than I ever would have had a chance at while using topicals.

This is definitely a marathon, not a sprint. To any newbies out there, the process of recovery from red skin syndrome is long and vicious. Hang in there, know you are not alone, and be confident that your body is happy the steroids were stopped (even if it isn’t as obvious as you hoped).

7/1/16 TSW 1 year 8 months 28 days 9 hours (not that I’ve been counting) Thriving 2 months 2 days

Skin:

My armpit area break out is finally calming down. Now my stomach and back are flaring. Nothing too horrible. Still have rashy calves and hands.

Thrive:

I’ve been thriving (https://syirka.le-vel.com/) for 2 months now. I’ve lost 9.5 lbs, though weight loss wasn’t my main goal. The weight has been coming off as a direct result of me doing more during my day and eating healthier. I still have not started going to the gym, and I honestly do not FEEL like I am doing any work. I am taking daily “adventure” walks with my kiddo and hula hooping. One of my biggest concerns about Thrive was the cost. I shared in earlier posts about how bad my diet was. I looked at some numbers today. In the month of March I spent a total of $166.57(GASP!!) at convenience stores or fast food restaurants. This is debit only and doesn’t count the rare occurrence of cash pay. I looked at March because in April I traveled to see my sister and my spending habits were not my norm. May was my first full month on Thrive. I spent a total of $34.77 at those same stores. Holy crap. Now I know this calculation does not show saving money, because I am spending more on groceries now, buying healthier foods. It does show the very dramatic difference in my diet/shopping habits after starting Thrive.

6/9/16 TSW 20 Months 6 days, Thriving 1 Month 10 Days

Skin

I’m noticing some interesting things with my skin.  I don’t know if it is the Supplements I’m taking or the normal progression of my TSW, but my skin is getting really soft again. My flare spots (hands, ankles, calves) are unchanged and continue to bother me, but the spots that are not flaring feel amazing. I am still reacting to the DFT patch so I have been using them only 3-4 times per week rather than every day. I am also still having some skin flaring surrounding my armpit area on both sides, it started with my Hormonal flare last month and has not left.  Overall I had hoped to have some more progression with my skin by Summer, but it is what it is.

Thrive

I have been on Thrive for over a month now (https://syirka.le-vel.com/). I have discovered some things about the way Thrive does and does not work for me. The first 2 weeks were pretty awesome, I got lots of things done and felt better than I had in a long time.

The next 2 weeks I was still doing better than my pre-Thrive state, but I wasn’t doing as much. I was still able to abstain from Soda/Coffee, and I was still doing well at work, but I would come home and want to hit the couch again. I was falling asleep early again. I wasn’t sure about Thrive anymore.

A little more than a week ago I realized that I was fighting it. Sure I had the energy, but I didn’t really WANT to do things. I’m a home body. I enjoy solitude, have never been into sports or other physical activities, and generally avoid socializing if I can figure out how. Thrive is not magic. I did not suddenly turn into an extrovert that loves to run. I didn’t wake up and have a new personality. All that lovely natural energy derived from Thrive was turning into heavy anxiety in the pit of my stomach. I would sit on the couch and feel incredibly anxious, odd in my own skin. I would think about finding an activity to do or exercising, but I wasn’t able to go from thought to action. I finally figured out that no Supplement or Nutrition regimen will ever work if my mind is working against it. I messaged a friend and made plans for the weekend that included physical activity. When the day came I had the urge to cancel, but forced myself to go anyway. As soon as I got there I started to enjoy myself. I picked up a hula hoop and went for it. I feel like the exercise almost “activated” the energy to pick up again. It was like pushing a button. As soon as I started doing something I had even more energy and motivation to continue.

Now when I walk in the door after work, I try to picture a big red “activate” button in my head. I mentally push that button and start doing something physical (house cleaning or organizing, hooping in the living room.. whatever can get me moving). As long as I can remind myself to get started, I know I will have no problems continuing it. If my behind has the chance to get comfy on the couch, it’s much more of an uphill mental battle.

I have lost 7 lbs over the past month and 10 days, despite my stubborn periods where I wasn’t doing much. I am still eating healthier and am drawn to foods that are better for me. I haven’t wanted to step foot in a convenience store in weeks. I also am not even tempted to eat fast food (and the one time I did for convenience my body made me pay in a big way, GI distress like crazy).

Do I feel my first month was worth the amount I paid for it? Yes, for me it was. Something needed to change for me, and I think Thrive was the kick in the butt I needed.

TSW 15 Months 19 days Anniversary Flare

The dreaded anniversary flare. My skin started to take a turn for the worse about a month +/- a week after I hit the year mark. It was gradual. Somewhat more itching. The rash spreading to my stomach and back again. Then the burning came back. Then the ooze. I started losing weight like I did with my first major flare, which was what really convinced me that the flare was here to stay for a bit. I brought my finger less gloves out of hiding again. I am almost full body at this point. I have a rash of fine red itchy dots over the majority of my person. The most unaffected area is my head and face (thankfully).

I decided to do a little art project and draw what I picture in my head regarding how my body feels. The red (I know, so clever) is where the rash is the absolute most bothersome. These are the spots that are itching, burning, and/or oozing. No matter what is going on in the day, I can feel these spots. I might be talking to a patient, or trying to cook dinner, but in the background is the itch and pain.

Here are the pictures of actual body parts. I stuck with legs and hands/arms for the most part because I am terrible at getting clear pictures of other parts. The pictures don’t look as bad as it feels.

Legs

Arms/hands

Leg Progression

TSW Day 13

11/23/14 day 51

Day 97

Legs 5 months 22 days

Both legs 10-5-15

Left hand progression

Day 26 10-28-14

11/23/14 day 51

Left hand 5 months 22 days

8 Months 11 Days

Left hand 10-5-15

Right hand progression

Day 26 10-28-14

11/23/14 day 51

Right hand 5 months 22 days

8 Months 11 Days

Right hand 10-5-15

TSW 8 Months 11 days 6/14/15 Moisture Withdrawal

I have not posted in a while, its been difficult to get motivated to write. My skin feels close to the same it has been for the last several months. My legs continue to flare for at least 2 weeks out of the month when my hormones are going haywire. The other 2 weeks my skin is calmer and the rash lessens, but my legs still have not cleared all the way at any point in this journey. My elbows continue to have troublesome areas, but 2 of the most stubborn spots are starting to shrink.

I have no idea of the actual date, but a little over a month ago I stopped using moisture products on my skin. I now only take dead sea salt/ACV baths every morning. I didn’t really make a conscious decision to stop using moisturizers.  My skin simply didn’t want them any more. I didn’t feel the urgent need to slather on coconut oil or lemongrass balm after baths any more. I felt that when I did put something on, it no longer made a difference. The first week my skin was so dry that it looked like white powder was on my skin all day. Since then it has become much more bearable. My skin is soft in the areas that are not currently affected by TSW. I think the natural oils have begun to develop again.

8 Months 11 Days

8 Months 11 Days

8 Months 11 Days

8 Months 11 Days

8 Months 11 Days

8 Months 11 Days

I enjoy looking at the progress I have made, so here are some contrast pictures.

Day 13 10-15-14

11/23/14 day 51

Day 97

Legs 5 months 22 days

8 Months 11 Days

Day 26 10-28-14

Day 26 10-28-14

11/23/14 day 51

11/23/14 day 51

Day 97 1-8-15

Day 97 1-8-15

Left hand 5 months 22 days

Right hand 5 months 22 days

8 Months 11 Days

8 Months 11 Days

TSW Day 51 11/23/14 Improvement: Picture update

I got a camera! Yay. So now I have no crappy camera phone excuse for not posting update photos.

I woke up yesterday morning to some vast improvements in my skin. It still amazes me how quickly the landscape of my skin changes. Today brings even more improvement. My skin feels better than it has in years. I’m trying to remember the flip side of this quick healing is equally quick deterioration. My skin looks nice today, but its no guarantee for tomorrow.

In honor of this great skin day, here are some pictures:

Day 13 10-15-14

Day 26 10-28-14

Day 26 10-28-14

11/23/14 day 51

Here are my hands from day 26 10/28/14

And here are my hands from today Day 51 11/23/14- skin is much improved, though I do see the start of elephant skin around the knuckles.

Since things are looking up you might assume that I am up and getting things done. Not so much. Much in line with how the rest of the past few years has gone, I now have a nasty cold to contend with. I’m hoping my overall health will improve the longer I am off the steroid creams. I was getting sick so often the last couple of years.

Something to think about

I have already posted this in the forums etc, but thought I would put it here as well.

I read many of the posts in the Itsan forum, on facebook, and in blogs. I have noticed that some are either using or considering using prescription pain and or anxiety medication to help get through TSW. I am a huge believer in making decisions that benefit each person individually. What works for one doesn’t for another. With that said, I believe that knowledge is power. I’d like to help give back some of the power that TSW has stripped from our lives.

I am an addiction medicine nurse. My clinic serves opiate addicts, many of whom also have co-occurring addictions such as alcoholism or benzodiazepine addiction. An alarmingly large percentage of our patient population started using prescription opiate medication after some sort of accident or illness. It can creep up on you. A doctor has prescribed the medication. It is supposed to help. The pain is more manageable. Why shouldn’t you get to feel pain free? Slowly you need more of it to stop the pain. Then the big shock. Did you really need a refill that early? Then the words “pill seeking” start coming up in conversations with the doctors. You get a letter in the mail, your doctor is firing you. What does that even mean? Now you are in pain, with no more medication. Your body is sick. Your mind is sick. What choice is there but to buy pain medication through that friend you have. You know the one. Soon even that doesn’t work. Then you meet someone that has a better answer. Something that will really help the pain. Heroin. You may give in, you may not. With luck, you decide to get help.

The even more subversive addiction is to benzodiazepines. These are medications that are most often prescribed for anxiety. Many end in -pam. Clonazepam, Lorazepam etc. These medications are amazing. You get to feel good, to let go of the overwhelming worry just by taking a pill. What happens after TSW though? You haven’t flared in forever, and think you might be ready to get off these meds. You talk to your doctor about it. They start you on a taper, slowly reducing the amount of the medication. It sucks. Your anxiety starts to rebound. Your heart beats faster. You feel sick, so sick. If for some reason you can’t refill your prescription you feel awful. You could potentially have seizures if you abruptly stop taking them (please never quit cold turkey, always consult your doctor before changing the way any medication is taken). The single most common complaint I hear from patients is “why the hell didn’t my doctor tell me how much it sucks to get off benzos, how addicting they are?” Sound familiar fellow warriors?
Choose to use medication to assist you, don’t choose to use medication to assist you. Either way, I won’t judge. I just hope I have provided some useful insight. Healing thoughts to all.
**I think I should add that I am NOT giving medical advice, only sharing experiences. Both forms of medication can be beneficial and can be tapered successfully under direct supervision of your primary care or psychiatric doctor. I just think it is important to know the potential addictive properties.

Day 7 10/9/14

Yesterday I hit the 1 week sans steroid mark.   All in all it was a day full of emotional and physical ups and downs.

My 4 year old daughter was upset with me almost as soon as I got home from work.  She has been having quite a lot of crying fits and seems easily frustrated these days.  I can’t help but imagine walking around with a cloud over my head like Eeyore lately, sprinkling drops of unhappiness wherever I go.  I know that she would be having some of these temperament issues anyway, she is 4 after all, but I know that the somewhat forced inaction is getting to her.  We play plenty of cards, read books, paint etc.  Unfortunately my kid is way more into physical stuff.  She wants to jump on me and chase me and have me dance crazy with her.  Not only does she want to play, but she isn’t happy  unless I am playing too.  I dread the look in her eyes when I have to tell her I can’t do a particular activity. It’s pure unadulterated sadness.  I’m doing my best to only tell her no if I am at my breaking point.

I ended up in tears not long after our first mini argument.  I walked in the door from work and she ran up to me wanting me to take her outside right away.  I told her I had to take care of my boo boos first.  My legs had started to seep through the wrappings and I was convinced my hands should be smoking from all the burning sensation I was having there.  She was upset and ran into her room crying.  I went into my room and started to clean myself up.  I decided to cut finger holes in some of my old knee high polka dotted socks to cover my arms and help stop some elbow seeping I was having.  I asked Cylee to come talk to me.  I explained how bad my boo boos have been feeling and showed them to her. She watched me fix myself up and then disappeared back into her room for a few minutes.  When she came back out she had put some of her leg warmers on her arms.  She said “look mommy, so we can match.”  Out of everything, this little bit of beauty and kindness from my kid set off the water works.

We did go outside to play and she looked like she was having a blast.  About 30 minutes after being outside I felt my eyelids beginning to swell and itch.  My contacts felt so dry I thought they were going to pop out of my eyes.  I told Cylee we needed to go back inside and she got upset and started crying again.  Jon was getting ready for work and he asked me what was wrong.  Water works city again. Until now I hadn’t had any facial symptoms.  I’d hit a breaking point.  I feel shallow and ungrateful post freak out.  I see other blogs and pictures and I know that many people had horrible facial skin issues.  I even knew that it was likely I would get some symptoms on my face as well.  It’s hard to describe just how depressed I was.  I have been dealing with this eczema pretty much non stop for 4 years.  My positive mantra to keep me going had always been to think, “at least it isn’t on my face.”  I’m going to have to think of a new mantra.  Perhaps something like “one day closer to less symptoms.”  Or something.

This morning 10/10 is the first I have called in sick to work.  My legs are both swollen and my eyelids have become more swollen.  I have discussed TSW with my boss and coworkers.  Thankfully I work with some awesome people.  My boss is incredibly understanding.  Still I feel guilt.  I am not someone who calls out sick.  Maybe once a year if that.  I also think I needed a day off to recover from the emotional roller coaster I was on yesterday.  Swollen eyelids or no, life goes on, the rent needs to be paid and there needs to be food in our bellies.  I will be back to work tomorrow.

10/8/13, TSW DAY 6

Almost 1 week down. The symptoms I am experiencing change quickly from day to day. Over the past week I have had various itching intensity ranging from about a 6/10 to 8/10. I have had periods of time when my raw skin is oozing more than I ever could have imagined. On day 4 my rash became more widespread. I don’t resemble the pictures of bright red arms stopping at the wrist. My rash looks more like small red spots all over. It is on my thighs, butt, arms, stomach, and back the worst. There is some burning on and off accompanied by the ever present itching. I notice that when my skin is weeping there is a faint metallic odor. Tonight I started to get edema in my legs, particularly the right leg. My socks feel tight and my shoes may become impossible to wear soon. Nothing like a karmic slap in the face to remind you that there can be many reasons people wear “house slippers” when out and about. I certainly will never judge foot wear again. My body temperature has been wonky for sure. I’ve always been prone to feel cold but lately its been fluctuating between shivering and sweating. Oh, and then there are the mood swings. Let’s just say my entire body system feels like its on a pendulum.

I have to admit I did not prepare enough when deciding to stop the steroid use. If you are reading and have not stopped using the topical steroids yet, here is a list of the things I had ready/wish I had ready when I started:

Benadryl- or whichever antihistamine works for you.  It doesn’t stop the itch for me but it does take it down a notch or two.  It also helps me sleep at night.

Ibuprofen- has helped with many aches including the zinging odd pain sensations

100% cotton- a variety of lengths (I have been using cotton to wrap around the ooze in hopes of not seeping completely through during the night)

Many Many Many bandaids/bandages- Seems like common sense, but I never seem to have enough. Mine is pretty bad on the backs of my hands and I work a job that I have to keep it covered or risk serious infection (not to mention the constant stares, gross out faces, and questions when clients see them). I think I am going to buy fingerless gloves and just tell clients its for carpal tunnel or something.

Bath Salts- I have been using dead sea salt. It stings initially but the limited relief is plenty worth it.

Calamine lotion- Has helped dry up the exudate a little.

Petroleum Jelly- I have not been using it yet because my skin is so wet it seems like it is useless. During the periods of super dry skin I hear are coming up I will try it out.

Domboro- I just ordered some off Amazon.  I am hoping it will help to dry out more of the weeping.

I would also make sure you are caught up on house cleaning and grocery shopping because even the smallest task seems huge this first week (and I can’t imagine it getting easier any time soon). It may even be a good idea to make some meals to freeze for the days you would rather starve than try to stand at the stove and cook. If you have children, especially younger ones, I would recommend having lots of numbers for sitters/friends/etc ready and waiting. My daughter is 4 and I have been feeling like a horrible mom. Her father and I work opposite shifts so when I get home from work I am the only one my poor kid has. It’s heartbreaking to hear her cry when I can’t play tag with her or go swimming in the community pool.

I have always been anxiety prone and I think the TSW is adding to that. I am having anxiety about my appearance, about the way my body feels, about how long the withdrawal will take, about the possibility of having to take time off work (every blog I have come across has mentioned having to take time off from work or school), about not meeting my daughters needs, and just about every other thing I could possibly worry about.

I have been particularly interested to see if ANYBODY has worked through the entire withdrawal period. I am the main provider for my family and even the possibility of forced time with no pay (if I run out of sick time) is enough to make my heart race.

I currently only have my really crappy old phone for pictures.  I’m working up the courage to take some current ones so that I can post progress pictures as time goes on. I barely want to look at myself these days much less post close ups online BUT I have benefited greatly from other bloggers posting their pictures so I WILL do it.