1 whole year!!!

I can't believe I've been going through this for an entire year. Well, a year and week now because I'm a bad blogger. As soon as I get a little better, I try to forget about my skin altogether and therefore dont update the blog as often. Anyway, I flared big time over Christmas. Christmas Eve was my 1 year anniversary and I started flaring a couple days leading up to it. I was actually flaring on/off since my last post but it got pretty bad during Christmas. It could have been a number of things that caused me to flare. 1, there's the infamous "1 year anniversary flare" that everyone talks about but I'm not sure I believe in that. How could everyone flare exactly 365 days into withdrawal? Realistically, it just doesn't make sense to me. With that said, it's still a possibility. 2, stress!! This one I know contributed. Having 5 people stay at my house AND hosting Christmas took a bit of a toll on me. I haven't moved around that much since before this thing began. I was tuckered out for days after Christmas. 3, food flares...in the beginning of TSW, I wasn't sure if my diet affected my skin but I would say that FOR ME, diet definitely plays a part in how my skin looks and feels. For the past couple months, I have been really good with my diet - eating pretty strict paleo style (though I prefer to just think of it as "real food" rather than some fad diet). That means everything organic, no grains, very little sugar, lots of veggies, etc. I also stay away from nightshades. Well on Christmas, I threw all that to the wind. I ate mashed potatoes (nightshade), gluten free stuffing (grains), and lots of dessert (sugar). And let me tell you...I have not been that itchy in MONTHS. That bone deep itch which I had so gratefully forgotten about returned with a vengeance. It reminded me of how far I have come and why I need to fully commit to a healthy lifestyle. Alot of people think that diet has no part in healing but I believe that if you make your body a healthy place, that would obviously be conducive to faster healing. Or at least not stall healing. But since cutting those things out of my diet again, the deep itch has gone away. 4, pure chance. I mean, TSW is essentially just a roller coaster of flares that should eventually die off. I'm hoping, PRAYING, that the worst is behind me. I've said it before but seriously, it couldn't possibly get any worse than it's already been. Even with this past flare, I didn't ooze. So thank God for that!!! Now what I'm left dealing with is the weaning off of medications which is difficult in itself. Some days I feel fine and then sometimes I'm hit with a wave of such deep hopelessness, its shocking. Luckily, I'm able to rationalize during this time and know that it will pass (usually within hours). But those few hours are pretty dark. All of a sudden, I'll feel SO sad for NO reason. It really fuels my disdain for drugs and conventional/western medicine. I can't wait to be rid of all medications and their side effects. As for the medication weaning, I'm on about 2.5mg of vicodin a day (down from a peak of about 11mg) and 300mg of gabapentin (down from 1200mg). I should be done withdrawing from these within the next month at which point I will start weaning off the valium and ambien. The past couple of nights have been plagued by terrible sleep so that worries me a bit but I'll deal with that as it comes. Trying not to stress about every little thing!

I haven't been taking as many pictures so here are just a few.

My hands from about 2 weeks ago. They're pretty much in the same state. Can't really use them for much because the open skin makes any contact painful. Bearable though.

Back of my knees (mainly the left one) are a constant source of pain and itchiness. At least the wounds are not that deep anymore.

Lastly, my face and neck. Neck is actually pretty sore though you can't see much. My skin is dry and cracked around mouth and nose but much better than prior months. My forehead looks like I have acne but I don't care. When I was flaring, it was very red, blotchy and hot. Now my temperature is back to normal. 

So there ya have it! One year down and I'm guessing one more to go. But I'm finally functional!! So all in all, life is pretty good right now. Wishing everyone a HEALTHY, happy, and healing 2015!! 

11 month anniversary & happy thanksgiving!

It's actually 3 days after my 11 month anniversary and honestly, I'm feeling better than I have all year! I've seen incredible healing in the past few weeks alone. I attribute this fully to the sun I've been taking. Time having passed is obviously a factor as well. "Time heals all wounds" takes on a literal meaning now! I've been getting out more - going grocery shopping, having play dates, and finally am able to wake up with the baby! I actually feel pretty NORMAL. And unlike other times that my skin has gotten a bit better, I feel like my skin is really healing this time.
It's amazing!!!

My problem areas are still the same, just lesser. My face is healing, neck is almost completely healed, hands and arms are a bit better...behind my knees hurts the most and my ankles/feet area are still quite thick and scabby. The itch is not nearly as bad as it once was and aside from the area behind my knees, I have next to no pain. My biggest problem by far is weaning off all the medication I've been taking to handle all these crazy TSW symptoms. I'm currently down to 3/4 of a vicodin a day and down about 200 mg of gabapentin (from 1200 to 1000). It'll probably be another 2 months until I'm fully off these and then I can start weaning off valium and then ambien. I am worried about the sleep but I'm just taking it one step at a time. I have to say, though, this weaning process is alot harder than anticipated. I am IRRITABLE, all the time. I feel a little crazy. Sometimes alot crazy! LOL. It's not funny, actually, because when it's happening I tend to take it out on whoever it around me which is usually the hubby. But then when I'm feeling okay, I'm able to look back and laugh at myself and how crazy these drugs are making me. I get a migraine type headache if I don't take my medicine at exactly the same time every day. Sometimes I cry for no reason. It's definitely taking a toll on me emotionally but I know it's temporary, just like my skin. I'm actually starting to plan things for next year whereas 2 months ago I was assuming I'd still be housebound in 2015.

I will post more pictures in a few days but right now I have some Thanksgiving cooking to do!! In keeping with tradition, I will share what I am most grateful for. I think it is obvious... but I am SO grateful that I am finally healing and feeling better and even more grateful to everyone that has supported me throughout this incredibly difficult year. I love you all!! 

10 month anniversary

Today marks 10 months that I have been off topical steroids! Actually 10 months plus 5 days because I wrote this last week and never got around to adding pictures and posting. It's been a very difficult road so far but I think I may just be turning a corner. My last flare was not as bad as prior ones. FINALLY. I've read that during TSW each flare is supposed to be less intense than the prior one but that has never been the case for me. I've basically been flaring since this whole thing started. I'll have "calm" days but no definitive breaks. I haven't had clear skin in 10+ months. My personal opinion, and I hope I'm right on this, is that I'll now continue to have my premenstrual/menstrual flare (honestly - it lasts 2 weeks, so half of every month im flaring and then the other half is a toss up) but that it will not be as bad as it's been these last 10 months. And then I think it will just teeter off. While my face is still not healed, it is WAY better than it was a month or two ago. My problem areas remain (face, neck, hands, arms, behind knees, groin, feet) with the latest addition of behind the ankles. The behind the ankles area is weird because 1) I never used TS there and 2) Dr Rapaport said it looked "eczematous". What is the difference between eczematous skin and addicted skin? Does that mean I will still have eczema once this withdrawal is over? He assured me that I would be completely clear but how can he really know? I've prepared myself for the worst; the worst being that I do in fact have eczema at the end of this. Or maybe the end of TSW will just be so long that I will be one of those cases that takes 4 years (yes, there are people at 4 years still flaring - Joey, for example) but that I'll have clear-ish skin and be functional yet not know if I'm still in TSW or if I have eczema. If I do still have eczema at that point, I will go hardcore on my diet, as I believe it can be cured that way. When I first started this process, I was diagnosed with hypoglycemia, leaky gut, and on the border of having hashimoto's. There were other things but I can't remember. Hashimoto's disease is essentially when your immune system attacks your thyroid and I 100% believe that was from the steroid use. So then I'll have the leaky gut and hypoglycemia to deal with. I have the tools to cure these things (diet, supplements, exercise) I just haven't had the motivation to do it during TSW. Actually, I take that back. I did attempt to be super healthy in the beginning of this but found that I flared regardless of how healthy I ate. So I instead opted to be comfortable (ie eat comfort foods) during this horrific process and if I have to fight my eczema afterwards, then I'll address it at that time. Mind you, I'm still gluten and dairy free. But eating gluten free out of a box is not much healthier than eating gluten, in my opinion. I think eating whole foods, REAL food, not prepackaged bullshit (google thug kitchen cookbook and watch the video lol) is the only way to be healthy. That can come later, though. One thing at a time.

Speaking of one thing at a time. I'm weaning off of Vicodin, though it's proving to be a much longer process than anticipated. After Vicodin, I'll cut out the Gabapentin (nerve pain med) and then wean off Valium. Then HOPEFULLY I can wean off ambien and be able to sleep on my own. That part is scary because as far back as college, I've had to take a sleep aid. I'm hoping my sleep issues were due to the topical steroids messing with my adrenals. Oh ya! That's the other thing I was diagnosed with - stage 3 adrenal exhaustion. I also believe this is 100% from the TS. Anyway, I had been taking 1.5 Vicodin a day and am now alternating between 1 and 1.25 every night. So I guess it'll probably be another month or 2 on Vicodin, and that is because I experienced withdrawal symptoms when I tried to just stop. But I'm taking it all as a good sign because it means less pain! I sometimes forget to even take the dose and hubby has to remind me (I start to get a little coo coo crazy if I dont take it). Before, the pain reminded me to take the medicine. I also stupidly started taking less valium. I obviously didn't learn from my vicodin experience. For the past 3 weeks, I've felt like crap - insane headaches, body aches, insomnia, sweats - and thought it was from a cold. No! Turns out it's because I cut back on the valium. Stupid stupid stupid. I went back to my regular dose last night, per my doctor's recommendation, and today I finally feel better!! So one at a time is definitely the way to go from now on.

As I said before, the sun has been super beneficial for me at this point in the game. In fact, last week was rainy and overcast here in S Fl and my skin got a worse from not being able to get my rays. The sun has since returned and my skin has gotten better. I think once I have a year of TSW under my belt, I may actually start to be functional again! It just sucks that I now have all these other medications to "withdraw" from. Though in hindsight, I wouldn't change taking them because I absolutely needed them. So it is what it is.

Anyway, pictures below.

TSW day 290

I wanted to do another quick post (sorry, no photos this time). Last time I mentioned feeling quite a bit better lately and I think that is directly related to my sunbathing. I've been trying to get around 15-20 minutes a day, though it's hard because I live in South Florida and it is HOT. This is what Dr. Rapaport has recommended to me, though I am overdue for an update to him.

What I really wanted to discuss is another type of withdrawal. Alot of people going through TSW, myself included, take painkillers to ease some of the symptoms. For the past 2 or 3 months, I have taken Vicodin every single night. Like clockwork, by 7pm everynight, I would start feeling a burning pain in my neck. That's when I knew it was time to pop a pill. After the first 2 weeks, the dosage I was taking (5mg) was not enough. My doctor upped it to 7.5mg. That also worked but I told him that I really felt that I needed more sometimes. He was hesitant but agreed to let me take an additional half when needed. Well, that eventually turned into every night. Mind you, I was not over-medicating. I never felt high. It was definitely necessary. So anyway, for the past 2 months, I've taken about 11mg of Vicodin a night. But in the past week, I've noticed that the pain hasn't been as intense so I decided to cut back a little. 2 nights ago I only took 1 Vicodin and then last night I only took 1/2. WELL, let me tell you...that was not a good idea. I didn't even think about the possibility of experiencing withdrawal symptoms, though I knew from the beginning that I would have to deal with it so I'm not sure why I didn't think of it. After speaking to my pain doctor today, he confirmed that the symptoms I described were in fact withdrawal symptoms and that if I wanted to avoid them, that I should taper down. So that is what I intend to do and I hope the pain doesn't come back so I don't have to take any more painkillers! In case you're wondering, here are the symptoms I experienced: EXTREME irritability, (unfounded) anger, outbursts, headache, insomnia, major sweats, etc. I mean, it was so ridiculous how emotional I was last night that I would literally be sobbing one second, snapping at hubby then next, and then laughing hysterically at how crazy I was being a moment later. My husband thought I was a crazy person. And I was indeed! LOL. Anyway, I just wanted to let others know that you should definitely consult your doctor before making any changes in your medication! I know alot of us suffering through TSW have a distrust in doctors because of what we are going through but in most instances, doctors are well-trained and certainly know more than us. Unless it is dermatologists and topical steroids we're talking about ;)

TSW day 285

Just a quick update. The last few days have actually been okay. My skin is somewhat calm, though I feel a flare coming on (my premenstrual flare). Emotionally, though, I've been feeling so much better. I obviously feel better when I look better. A lot of people get "breaks" in which their skin clears for a period of time until the next flare or cycle. I've never had one but I think I get emotional breaks instead. It's like God knows just when I'm at my wits end and decides to cut me a break. It's usually only ever a few days at a time but you know what? I'll take it. It's just enough to remind  me that I WILL get better.

Things I can't wait to do once healed

In no specific order...

1. Go to Vegas!!! Gotta make up for lost time
2. Go shopping for NON eczema clothes. In fact, get rid of all eczema clothes
3. Have a normal sleep schedule (ie wake up w the baby)
4. Get back into shape- running, yoga
5. Go on dates w the hubby
6. Go grocery shopping myself
7. Volunteer at my baby's new preschool (who knew I'd be so excited about PTA?!)
8. Start looking for homes to buy (or build!)
9. Take baby on fun adventures every day
10. Resume laser hair removal
11. Go to church
12. Travel somewhere awesome, take road trips around FL
13. Wear my hair curly
14. Get a massage!
15. And a mani/pedi
16. Go to the beach & lay out by the pool
17. Become a domestic goddess! Cook up some delish & nutrish meals, organize my house and keep it tidy - because I'll have energy, right?!
18. Maybe go back to school? Get a master's in holistic nutrition
19. And eventually, once I've lived it up a bit, get pregnant again!

I'm sure there's more but at least there are plenty of things to look forward to :)

9 month anniversary

Four days ago was my 9 month anniversary. Sigh. I could've birthed a child by now! And that's what I should have been doing before TSW came and ruined my plans. I definitely thought the worst would be over by now but it seems I'm still in the thick of things. I have become a recluse with no desire to see anyone but my husband or son most of the time. I definitely feel depressed alot of days. Now I understand when I've read about others having suicidal thoughts. I'm not suicidal BUT I did have one really dark night when my husband was travelling recently. I was having a really bad night and thought how easy it would be to just take all my (narcotic) medications and fall asleep and not feel any pain. Of course I would never do such a thing because I actually have a great life all things considered. I just can't live it at the moment and that's beyond frustrating. I hope I don't scare any of my family of friends who may be reading this. But I need to be honest for the others going through tsw so they know they're not alone if they're going through a similar phase. Damn this thing!! I dream of life after tsw.

My symptoms this past month: itch has picked back up lately, face has been redder and oozing a lot more, my feet and knees are crazy itchy and painful, fingers have been splitting a lot so I go through about 20 band aids a day to keep them covered, and of course dry wrinkly skin. I have been wearing my clothes inside out because the seams bother me. Places like my wrist/forearm, where I tend to rip off a lot of skin when I scratch, I've been wrapping tightly with cotton cloth. I've found that compression helps the itch for me. Sleep is okay, still waking up once a night but haven't been able to fall asleep until around 3am every night and that's with all my sleep medications. I tend to get tired for a nap around 4pm but sometimes try not to nap at all in an attempt to go to sleep earlier. Doesn't work. I've also been really cranky and irritable lately. Like all the time. I think I'm just getting weary of dealing with this every day.

On the flip side, I've come across a lot of other people that have it way worse than me. I hate to say that I find this comforting. Misery love company and all. But it makes me grateful that I don't have it as bad. I was reading about a BABY who almost died from renal failure bc of all the damage the topical steroids had done. That baby has since healed!! Isn't that amazing?! From being in and out of hospitals for infection after infection and being labelled failure to thrive to becoming completely healthy with clear skin. All by just stopping use of topical steroids. Which reminds me, I'd like to share why I decided to do this. I'm sure I've written this before but I want to reiterate it more as a reminder to myself. Within the past 5 years, I noticed the steroids stopped working. I tried everything but my skin just kept getting worse. I was always really tired. Every once in a while I'd wake up with swollen eyes, which I now recognize as a sign of TSA (topical steroid addiction). When that happened, I probably hadn't used TS for a day and my body started going into withdrawal. I now am able to look back and see the signs. There were a lot of them, I just didn't know what they meant. Another one is the burning itch. That would happen every so often but again, I had no idea that it was anything other than eczema. Finally, when I started tsw by accident, I saw how the rebound affected my body and became angry. I was like "F these steroids!!" Because if that's what happens when I stopped using them, there was no way I was going to continue to subject myself to their poison. If I had continued using them, I'd still be dealing with my worsening eczema with no end in sight. I'd never be able to bathe my children, never be able to go outside and play ball bc the sweat makes me break out, never feel comfortable in my own skin. I'd live a life of constant fatigue and adrenal suppression all the while subjecting myself to other illnesses because of my lower immunity.  I'd always be sick! So... I look forward to a life WITH energy, skin that plays no role in my decision to do things, and being able to live a normal life.

Lately, I've been going back and forth between wanting to advocate and raise awareness about TSA/RSS (Red Skin Syndrome) to not wanting to even think about it. Those within our little community knows that the NEA (National Eczema Assoc.) has created a task force to "research and review" this disease. Unfortunately, there is no way it will come out in our favor. They have big corporate sponsors who produce guess what?? That's right, topical steroids. They've already stuck information about it under the "myths" section. Assholes. Because if the medical community doesn't accept this disease is real, then it will only continue to grow and get worse. I don't think it's a coincidence that adult eczema only became prevalent after the introduction of topical steroids in the 1950's. Remember when eczema was considered a childhood disease?

Anyway, I hope next month I will have some improvement to share. If not, I know that eventually I will. This WILL end. Oh! That reminds me. Dr. Rapaport cleared me for some sunshine! He said that the abrasion around my mouth seems to be superficial. So maybe I really will have some improvements to share next time! :) Pics below of the last few weeks.

And today!