Thursday, July 24, 2014

Month 7 - Moisturizer Withdrawal Again!!!

The day I wrote my last post, I had been waiting for feedback from Dr. Rapaport. I had sent him my pictures and explained that I was reacting towards the moisturizing (didn't include the fact that I ate gluten since he doesn't believe diet plays a part in this). Some of the side effects I experienced were some that I hadn't seen since the beginning of this process; red sleeves, intense burning on my neck, oozing, increased redness all over, and severely increased itching. I heard back from him the following day saying to cease all moisturizing, that my skin is just too sensitive for ANYTHING at all to be put on it. Arrrrghhhh!!!! I wish he had not advised me to moisturize in the first place. I told him I wasn't using anything because it worsened my symptoms. With all that said, if I hadn't moisturized, there's no way I would have been able to go to my friends' wedding. So in the end it was worth it. I'm just paying for it now. The past 3-4 days have been so incredibly painful, I don't even know how I've endured it. Actually, I do. I slept through most of it. I saw a pain management doctor the other day and he is upping my gabapentin (nerve pain meds) hoping that will help with the burning pain. I was already taking it on an as needed basis but he informed me it's the type of drug that needs to build up in the system. Whoops. I also got a script for Vicodin but I took one last night and I still had pain! Wtf?! I guess it just eliminates the most excruciating pain. I was hoping it would eliminate ALL the pain. Since I'm going through moisturizer withdrawal again, I'm experiencing lots of pain. Luckily, it's not as bad as last time (see my post labeled - Moisturizer Withdrawal day 15 under popular posts) but still really hard. On the plus side, I've already notice my skin start to heal quicker and toughen up a bit (it's able to handle more itching before breaking) and redness has decreased. I've been taking 2 baths a day, as recommended by Dr. Rapaport, and this time around, I'm liking it. When I did moisturizer withdrawal last time, I wouldn't bathe every day and my neck would get so stiff, my whole upper body would be sore from not being able to turn my neck. But this time around, Ive been able to gain mobility by more bathing. Also during MW last time, I'd have crazy thick, disgusting scab build up which lead to a constant picking/oozing/re-scabbing cycle. This time, my skin doesn't have the opportunity to build up the thick scabs because I keep my skin moisturized with bathing alone. I actually look forward to baths now. After getting through the first 5 minutes of intense stinging/burning, it starts to feel quite soothing. It's the only time I feel NOTHING. Ahhhh it's so good. I've also been using Domeboro 1-2x/day. Domeboro is an astringent that helps control the oozing. I use it on my upper lip area and anywhere else that I scratched the shit out of.

Anyway, enough complaining. Here are things I am grateful for:
1. MY HUSBAND!!! He has been so amazing during this whole process. I love him so much. He works so hard yet never gets frustrated with all the slack he's picked up when I'm basically an invalid (which is pretty much all the time lately), and is always there to hug me and comfort me when I need it. Even during my darkest hours, he can make me laugh. I would say we have a really good laugh at least once a day. Those of you going through TSW know how depressing it can be and sometimes it's hard to even smile so being able to laugh feels so good. It reminds me that there are good times ahead.
2. My husband. Lol. Seriously, he is the reason I am able to get through this.
3. My health. This is a funny one because obviously I am sick. I look in the mirror and I see a sick person. But I am not dying, I don't have cancer, my son is healthy, my husband is healthy, what more could I ask for? One day I will be done with this and I will be stronger for it.
4. ITSAN. I don't participate too often in the forum but I know it's there for me if I need it. What better place to get information than from other people going through the same thing?

Picture update:

These first 2 pictures are from a couple days ago after an itch attack. See the oozey part at the bottom of my neck? That's the part that has been killing me lately. It's weird how the places that hurt the most are barely visible.

The next 3 pictures are from today. Although it doesn't look much better, it FEELS better. No oozing! And that's all I care about right now!

PS- Today marks my 7 month anniversary since quitting steroids!!!

Saturday, July 19, 2014

Vacay recap & thoughts on stopping moisturizer withdrawal (warning: long post!)

Where do I even begin? I feel like the last week has been incredibly healing and detrimental at the same time. I'll start off with the vacation. In my last post, I covered everything I thought I would need in order to be comfortable and look normal during my weekend getaway. In hindsight, that list was pretty spot-on except for missing a few things. 1) I did not think about shaving. Prior to this past weekend, I just haven't shaved. Doing so left my legs and wherever else I shaved a hot mess. It would be a brutal blend of eczema and razor burn, times 10. Luckily, I was able to use hubby's electric razor, which didn't produce any negative side effects. 2) Makeup. I knew this would be an issue but decided against doing a trial run because I was just too scared. I didn't want to aggravate my already sensitive face by seeing what I would look like in advance. Well...let me tell you, wearing makeup during this thing we call topical steroid withdrawal is not fun. The wedding had 2 events: rehearsal dinner and wedding. The first night was actually not so bad. I took a bath as soon as we checked into our room, then a nap, and woke up with relatively calm skin. Hubby was in the bridal party so I didn't have him to count on for morale boost during this get ready process. But like I said, the first night was not too bad. Since I've been moisturizing again, I strategically applied vaseline on my face an hour prior to the dinner so it would soak in a bit and leave my skin soft enough to apply makeup over without a ton of flakes and cracks showing. This seemed to work fine and off I went to the rehearsal dinner. I caught up with friends I havent seen since last year or longer, which was awesome, and no one seemed to look twice at my face. The people who were aware of my situation were compassionate and understanding. In other words, no one frickin cared! Lol! Moving on... The worst part was at the end of the night trying to get the makeup off. It was basically impossible. So I itched it all off. Obviously. Took all my meds to calm down and go to sleep and started the next day anew. Considering I hadn't drank in MONTHS prior to this weekend, the next day was not so bad, hangover-wise. I did lay in bed all day and was incredibly tired but no crazy headache or anything. Hubby went off for his groomsman duties at which point I bathed and tried to be calm so my skin would follow suit. This night, the makeup did not go on as seamlessly. I guess because I had essentially ripped off the makeup (specifically, above my mouth) the night before, I had cracks that were raw and oozing that refused to be covered by foundation. See pics below which show the first nights makeup application. The first pic is straight out of the bath with vaseline on my face, hence the redness. The second is with makeup. Unfortunately, as the night went on and some of the ooze dried with the makeup on top, it got really crusty and thick. Wish I had taken pics at the end of the night too but oh well.

I did my best the second night and headed off to the wedding, reminding myself that no one else cares except me. (Sidenote: The wedding was SO beautiful. It was all about the couples' love and it was absolutely perfect.) When it was dinnertime, they were able to accommodate me with a gluten & dairy free meal on the fly, which I was super grateful for. They even brought me out a gfdf dessert! I was so excited when that happened! Anyway, this night I couldn't really stay gluten free in the way of alcohol because the bar had what they had and it was either drink rum & tequila all night or just say "F it" and drink what I want, which was vodka. So I drank regular vodka (I usually stick with Tito's, Ciroc, or Chopin which are made from potato instead of wheat/barley) which eventually led to regular beer and then by the end of the night a slice of pizza. Sigh. This is where things went downhill quickly. Let's rewind a bit, though. During the wedding, I danced my butt off. I had to take a break every other song lol because I would sweat and that of course stung. But boy did I have fun! I haven't been out in so long so it felt SO good to just party with my friends and not think about my skin. The slice of pizza happened at the after party (yes, my friends are awesome - they don't just have weddings, they have rehearsal dinner parties where everyone is invited and then afterparties with open bars and beer pong lol). At this point, my inhibitions were incredibly low and I threw caution to the wind. I decided to just have that slice of pizza, which I haven't had in probably 8 months. Within an hour, the uncontrollable itch set in. Mind you, it was probably 2am by this point. It got so bad, I kind of just had to bail without saying goodbye. I was super bummed about that but knew everyone would be understanding (if they even noticed). On the walk home, I went crazy itching and then started sobbing because 1) it hurt like a bitch and 2) I was inebriated. That night, I had the worst itch attack to date. That's all I can really say about that. If I go further, I'll probably send myself into another itch attack just thinking about it. Anyway, it was bad. Really, really, really bad. I knew I would have a set back from this weekend and knew that I would have to pay the piper. And pay the piper I did. So now it's about a week after the wedding and my skin is still healing from the damage I did but the memories I made are priceless and if I had to do it all over again, I would in a heartbeat. 

Now, regarding restarting moisturizing. I have mixed feelings about it. On the one hand, it allowed me to be out in public, which I haven't done since the beginning of my withdrawal. After getting back from the wedding, I even went grocery shopping AND to the movies! Haven't done that in I don't even know how long. But for sure I notice more redness and itching after moisturizing. In fact, last night my neck was on FIRE, which I haven't experienced in months. I am terrified of the prospect of potentially having to do moisturizer withdrawal again. Even though I wasn't that much better off using no moisturizers. I would bathe every couple days, have crazy anxiety when I did have to bathe because the drying out process was so awful, and was never able to leave the house thanks to the grotesque mustache and face scabs that wouldn't heal for months. But at least I wasn't in pain. I've had times this past week that my neck's hurt so bad, it's unbearable. I actually made an appointment with a pain management doctor because it's too much to handle and tylenol/aleve/advil have not cut it. But who's to say it's the moisturizing? It could very well my body trying to get rid of the gluten. How do I know the gluten has such a major effect on my skin? Well, coming back from the wedding, crazy itch attack and all, I was feeling pretty confident. Cocky, even. So after 2 days home, with my skin on the mend, I decided to test out whether it was all the drinking and altitude or if it was the gluten. I ate these little donut things and by the end of the night, I was just as bad off as I was the pizza night. more gluten. Stupid, stupid girl. I know I'm gluten intolerant, why was I even pretending?? My mom is celiac, my cousin is celiac, I've been tested for it for goodness sake! It just runs in my family. Now I know not to EVER cheat again. I may give it one more shot after I'm healed but certainly not during this withdrawal process.

The pic above was a few days before leaving for the wedding. Much better than a month ago, shown below...

Unfortunately this is what I look like today. Im confident that it will get better as the days go by.

The last thing I want to add is that I haven't been taking my supplements for the past week or so. I also haven't been eating as well, juicing as much, or drinking alot of water. Don't know if any of this plays a part in the current state of my skin. It just goes to show you that this withdrawal process is truly unpredictable, a roller coaster with unexpected ups and downs. The only way through this hell is to keep on going. 

Wednesday, July 9, 2014

Traveling during TSW & update on moisturizing

So I have this wedding coming up and have had to do some major advanced planning in order to be comfortable going. I started with a list of things that worried me about the trip and then figured out a solution for each them.

1. Ice packs - I'll have a 2 hour flight to Atlanta and then a 3 hour drive into the mountains of North Carolina. Plus wait times in between. I usually don't go an hour without an ice pack. So I ordered 1) one of those old school refillable ice bags and 2) those hospital insta-cold packs. They only provide about 15 minutes of cold but if I'm having an itch attack, that should do the job. 
2. Bathing - Per Dr. Rapaport's orders, I've been bathing every day and so far it has been beneficial. I would NEVER imagine taking a bath in a hotel but showers don't seem to moisturize my skin enough. I'm packing my own soap to clean the tub so I can in fact bathe at the hotel. Our flight is super early in the morning so I won't have time for a bath beforehand and my skin looks the worst when it's all dried out and scabbed. I'm hoping I don't run into anyone at the hotel until I've had a bath! 
3. My hair - I have really curly hair and ever since doing moisturizer withdrawal, have not been able to wash & style my own hair because my hands have so many open wounds. I resolved this a long time ago by finding a hairstylist to come to my house once a week to wash and blow out my hair. Before this, my hair was basically getting dreaded in between washes making the showering process even longer and more painful. 
4. Childcare - When we first booked the hotel for this wedding, we were planning on making a vacation out of it and bringing the boy. Travelling with a wild toddler is hard enough but with TSW, I would've flared just at the thought of it. So we're leaving him at home with my mom. 
5. Clothing - I had to start ordering dresses 2+ months in advance in order to try them on since I have not been leaving the house for anything except doctor appts and some playdates with close friends. The mall was out of the question. Obviously, the dress could not be black bc flakes would show up. I also had to find a wedding appropriate sweater to cover up my eczema ridden arms. No easy task in the middle of the summer. But I found everything I needed, woohoo for online shopping! All other outfits will probably consist of my usual TSW uniform - leggings and a soft shirt. I may even get a chance to catch some rays because it'll be cooler in NC than it is here in S. Florida. We'll see.
6. Anxiety - Valium. Lol. That is all. I will be anxious about everything. I haven't left the effin house in months and now I have to be in all sorts of public situations. 
7. Food - How does a gluten free, dairy free person travel? They find a health food store and stock up! Luckily there happens to be a great health food store not far from the hotel that I'll get my milk for coffee, snacks, and they even make green juices! Yay! And then we have a list of restaurants with gluten free options in the Atlanta area for when we land. 

 I think that covers everything that worried me. Anything else is out of my control! Now, update on my skin since consulting with Dr. Rapaport. As you all know, I did moisturizer withdrawal for about 4 months. Even though I had a really hard time with it, I would still recommend it to others. It toughened up my skin, stopped the oozing, and decreased my itching and redness. I would bathe every 2-3 days but pick nonstop at all the build up of scabs. Now I'm bathing every day so the scabs don't really have a chance to get to the point where I find it super disgusting and have to remove it immediately. Because of this, I have noticed some healing above my mouth which has been my biggest issue and the reason why I don't really leave the house. I have resumed moisturizing but ONLY right after a bath, which right now is 1x/day. (Dr. Rap told me to take 2/day which I have not yet been able to do.) I have definitely noticed that I itch more now that I moisturize. And immediately after applying moisturizer, I am super red. But it is nowhere near as bad as before I started moisturizer withdrawal. And by the end of the day, my skin is dry and pink again just like it was when I wasn't moisturizing. If I start oozing again, moisturizer will be the first thing to go. Oozing is the worst. But right now, my skin seems to be able to tolerate moisturizing and looks better doing it, which couldn't come at a better time. I'm coming to terms with the fact that this TSW journey cannot be accelerated. I will flare when I flare and heal when I heal. In the mean time, I will obviously TRY to speed up the process but accept the fact that I could be dealing with this for another year or so. Oh, I also want to mention that in the past week, I've been SOOOOOOOOOOOOOO tired. I have been sleeping like crazy, which I think has contributed to some of this healing. I will post pics after I return from my trip! 

Friday, July 4, 2014

Happy 4th of July!

Yesterday, my baby boy turned 2 years old! How time flies. Unless you're going through TSW, then time goes reallyyyyy slow. Unfortunately, yesterday was a "tired day" where I slept most of the day. I felt so guilty about it, I broke down to the hubby about what an awful mother I am. Of course, this is the week leading up to my period which ALWAYS means lots of crying and sleeping. Hubby reminded me that we celebrated his birthday over this past weekend so I didn't actually miss anything, and baby boy is only 2 so he'll never remember anyway! Sigh. That made me feel better and I was able to spend the last 2 hours before baby boy's bed time with him, which happened to be awesome. He was in a great, fun mood and totally lifted my spirits. Man, I love that kid. Hubby, too. Thank God for him.

Anyway, had my 10 day update with Dr. Rapaport. Sent him pics and a few questions, all of which generally had to do with putting a timeline on my healing. He didn't really answer any of the questions, rather reiterated the 1-3 year estimate and insisted on my following his instructions. I'm just going to copy & paste what he wrote:

"1- in the tub at least twice a day for 30 minutes- nothing added.  Moisturize after- lubriderm? aveeno ?  vaseline ?  you choose.

2- must use Burow's compresses on face- get crusts to fall off- I worry about bacterial infection underneath- 20 minute twice a day-  1-2 packets of powder in a pint of cool water

3-You are now getting my advice and experience with 3000 patients-  please do not believe all the at times nonsense that is on the internet- please stop gauging "their" experiences with yourself- all kinds of variations- only leads to frustration

4- your skin appears to be ready for sunshine or UV light therapy- it is summer please take full advantage-  every day if possible- minimal clothing, swimming,  no sunscreen at beginning and then some protection but it is the full rays of the sun that is therapeutic

5- followup with pictures in 2 weeks "

So...ya. Very different from what I've been doing. But ya know what?! I'm going to give it a shot. Because what I'm doing isn't helping and I'm still super uncomfortable in my skin. I admit I'm hesitant to moisturize as I don't want to go through another moisturizer withdrawal in the future. I'm going to use the Clofibrate Ointment that I ordered from Dr. Fukaya's website that I know some people have found some benefit from. I mentioned in an earlier post that I tried it for 5 days and ended up stopping because I thought it may have caused me to flare. But anyway, the reason I'm going to use this is because it's based in vaseline (I think) and may have the added benefits that others have mentioned. I'm only going to spot moisturize the places that are super dry and hurt whenever I dry out after a bath. Speaking of drying out, this is one of my main concerns for bathing TWICE a day. And without dead sea salts. I guess without the salt, I won't feel as dry, which will be good. I did take a bath the past 2 days and have to admit it was not that bad. In fact yesterday I almost went for that second bath! 

I would like to point out that I do believe in moisturizer withdrawal and think it is greatly beneficial to most people. But no 2 people experience the same kind of withdrawal and what works for one may not work for another. I think I did mine quite early (at 2 months) and was flaring like crazy so my reaction to the withdrawal of moisturizer was incredibly severe. Maybe if I had waited until my skin calmed down a bit, I would've gotten that comfort that everyone else talks about. But hey, I did it for 3-4 months so it's not like I didn't try! And like I said, I'm only going to spot treat. I definitely do not want to get back to that place where I need to bring  lotion and ointments with me wherever I go because I can't go 10 minutes without applying something. I'm ONLY going to use after a bath. 

One last thing about moisturizing....I kind of can't believe Dr. Rapaport is recommending these over the counter lotions. They're so unnatural, chemical-laden and just weaken our already weak skin barriers. Found that weird...

Anyway, my next post will be about travelling with TSW, as I have a wedding to attend next weekend. Stay tuned!