Thursday, December 31, 2015

2 whole years

Heal, heal, heal!!!

That's what I keep chanting to my skin, lol! My 2 year anniversary just passed and I had what a lot of people would consider an anniversary flare. It was quite bad. I felt like my skin was comparable to a year ago, which is a huge step backwards. My neck was burning and stinging, often had to wrap a soft t-shirt around it to block the wind. It also burnt like hell to take a bath. My knees started hurting again too, to the point where I was hopping around again. And the itch! Omg the itch came back. That bone deep, unquenchable itch. Even the crazy fatigue came back too. But now all that has subsided (well, all except the fatigue) and my skin is even better than it was before the flare!! Ever the unpredictable journey with you, TSW.

Trying to remain positive in the new year. Starting my Whole 30 tomorrow - excited to see what health benefits I experience from it!!

Friday, December 11, 2015

23.5 months - picture update

Still counting down to my 2 year anniversary. Still can't believe its been that long.

The past 2 weeks, I've been flaring. While I'm sure stress was a big contributor, I think the biggest reason was lack of sun. It's been rainy and overcast every day and my skin has definitely missed it. I've gotten sun 2 days now in the past week and those 2 days made my skin feel so much better. I love the sun. The texture of my skin got really bumpy when it was flaring, almost like hamburger meat. And red, hot, and itchy. It felt really gross. But then a few days in the sun and I'm back to being comfortable! It's really weird - when my skin is calm, it is SO soft. Like absurdly soft. Sometimes I just keep rubbing the same spot over and over again to feel how soft it is lol! Also lately I feel the temperature regulation issue is back. If I exert any kind of energy for as little as a minute, I start overheating. Almost every night I'm having to change my clothes due to sweating. I wonder if this is part of TSW or some other issue.

Got some bloodwork back and I'm no longer vitamin D deficient! Woohoo! Probably from all my time in the sun. Overall my health has improved since a year ago when I last got my bloodwork done. Sleep still sucks though the lack of it is affecting my daytime hours less, which is great. There are still times that I get overwhelmed with fatigue for no reason, but they are much less frequent. Anyway, below are pictures from the past month. My hands are the worst right now. They keep cracking, are super dry, itchy and a bit painful. My other affected areas are inner elbows, behind knees, neck and face. So all the same areas but just lesser intensity. I always thought that it would just teeter out eventually. I feel lucky not to be one of the people in TSW who flare and then have completely calm periods because I think I'd get pissed every time I started to flare again. At least I know that once my skin has cleared, that it will stay that way. So, pictures. The first ones are flaring, the last ones are calm-ish, and the middle ones are from the wedding I went to a few weeks back! The wedding pics show how I was able to wear makeup and look and feel NORMAL. Like a normal human being. It was amazing.

There ya have it, folks!

Friday, November 27, 2015

23 months

WOW. I can't believe it's been almost 2 full years since stopping topical steroids. To be exact, it's been 23 months and 2 days. And I am healing!!! I even went to a wedding last week, wore makeup, and drank alcohol with no major setback. I am flaring a little but nothing compared to what I was expecting. Last year, I went to a wedding around the 6 month mark and remember having to almost scrape the makeup off my face. That was the last time I wore makeup until this past week. Now, like I mentioned, I am flaring a bit. But I've come to the conclusion that in most cases, a flare is not caused by anything. It just happens. With that said, this flare felt a little different. My neck was really hot and itchy. So while it could have been due to the alcohol, I think it's actually due to stress, if due to anything at all. Last week, the night of the wedding, my family suffered a terrible loss. My mom's boyfriend of 12 years passed suddenly, and quite traumatically, right in front of her. So about a day later is when I started flaring. Maybe they're connected, maybe they're not. All I know is somehow I've been handling it pretty well. I think because I've had to be strong for my mom. I've never seen her affected by anything like this has affected her and it is just so heartbreaking. But I always try to find the silver lining in any situation. And as days go on, I've been able to do just that. So for that I'm grateful. This kind of situation forces you to stop and take stock of your life. I had already known there were changes I wanted to make once all this stuff was over but losing Kevin only reignites that fire by making me realize how precious life is. Here are some examples:
1. School - I want to go back to school! For holistic nutrition. I've always been interested in nutrition, and even applied to grad school a few years back but didn't end up going because I wanted to start a family instead. Now I realize it doesn't have to be one or the other. I can be a good mom and wife while pursuing my own dreams. I think doing so will actually make me a better mom and wife.
2. Positive outlook - I realize there are times where I'm negative and it sort of just comes out without me even realizing it. I'd really like to change that. I've already been making a conscious effort to do so but I want to shift my whole outlook on life to be super zen. Stress = bad.
3. Yoga - again, I want to be super zen. I dont plan on going back to my old exercise regime which was basically just cardio because that's bad for the adrenals and thyroid, both of which I have problems with. I just want to do fun and revitalizing stuff.
4. Natural living - I want to detox my life. This is going to be more difficult because my husband is innately against anything "healthy" so it turns into a fight if it affects him in any way. I've started small - changed to more natural hygiene and cleaning products - but would eventually like to make my own.
5. Make a difference - I don't know how exactly but this will end up tying with #1 somehow. Our food system in America really pisses me off. I won't go into more detail because I could go on and on forever. Which is why I need to go to school to have an outlet for this kind of stuff since my husband is so against it.

I will post a bunch of pictures soon!

Monday, October 19, 2015

22 month update

Technically it'll be 22 months down in 4 days. I figured it's time for a more thorough skin update. I guess I'll start with my routine.

Currently, I'm taking 2 baths a day and getting sun for an hour a day when available. I'm still doing moisturizer withdrawal but have to admit that I do use neosporin + pain relief sometimes. Only the back of my knees bc they hurt so bad. When they calm down from a flare, I'm able to stop using he neosporin no problem. I do try to limit my use though. I know the new moisturizer withdrawal is now full-fledged moisture withdrawal. I couldn't do that though I know it comes recommended by Dr. Sato (a TSW expert dermatologist in Japan). Moisture withdrawal is essentially moisturizer withdrawal with less bathing. The concept is that even water acts as a moisturizer. Personally, I feel way more comfortable taking twice daily baths. Occasionally Ill take only 1 if my skin is calm and dry bc the 2nd will make it too dry. When my skins gets so dry that I just rip it off, only the bath can 1 stop the itch and 2 soothe me. I really like baths now!

The areas that are affected most are behind the knees, hands, wrists, elbow creases, butt/leg creases, right ankle, neck, chin, face and torso. The knees are my biggest issue right now. I have to be careful walking because if I stretch the skin too much it will STING and burn like crazy. I know it's the scabs trying to close but, like, how long do they plan on taking?! So I'll usually re-wet them so I'm not tempted to pick at all the dry pieces of skin peeling up. It hurts when its drying off but then is usually more comfortable. If that fails, then I go for the neosporin. They seem to hurt the most after they've dried off from any contact with water but hurt the least when they are "moisturized" by the water. So when I take the bath, because I've been in there for 15-20 min and I'm adequately moisturized, the soothing feeling tends to last alot longer than when I just rub some water on my skin.

Other than that and the ongoing flaring which obviously sucks, life is slowly having some normalcy about it. On good days, I have pretty decent energy which is a huge change from last year. Last year I was home bound and essentially bed bound. I was suffering from adrenal fatigue, a result of the long term topical steroid use, and was just tired all the time. I don't think that will be an issue once this is over, which was actually a big fear of mine. Now my fear is...irrational. I wonder if I will heal, if my skin will ever get better, if I will ever sleep normally again. But like I said, when I truly think about it, I know I will. It is just hard to stay positive all the time after feeling like shit for so long. I have good days and bad days but the good days are like little previews of the life I will get to live once this is all over!

I've been thinking alot about iatrogenesis. No, I didn't know what that meant before this experience lol. An iatrogenic illness is one that is the result of medical treatment, from a physician or medication (or both). Basically, you listen to your doctor, follow the prescribed treatment, take the prescribed medication, but alas... you get fucked. I listened to all my doctors. I never applied the topical steroids any other way than what had been instructed to me. I took the valium as instructed. In fact, I usually took the lower dosage option. So then why did nobody tell me that I could become addicted to these things??? Why, even now, do I have a hard time convincing the very doctors that prescribed these medications that I'm now suffering from basically all the adverse side effects possible?? With these drugs having the potential to obviously ruin peoples lives, why are they so freely prescribed?? I'll tell you why! Because $$$$$ money. If we didn't stay sick and continue to need these medications, then those big pharma companies are not going to get paid!!! Even as I say that, I realize I sound like one of those crazy conspiracy believing people. I AM one of those people now I think. I mean, I don't believe that doctors are literally out to get me, but I certainly don't believe that they know best for me anymore. I dont assume that just because they hold MDs or PHDs that they know my body better than I know it. Because when this is over, it will not be a doctor who cured me, it will be me. So I think I've earned the right to be a little skeptical of the mainstream medical community. Holistic and functional medicine is where it's at!

Hope this post finds you all well! xo

Monday, October 12, 2015

21.5 months

My last post (which I never posted bc I never finished writing it and now it doesnt apply as much) was super positive. Right after my last post (what, 2 month ago? whoops) my skin showed incredible healing. It was like overnight the texture changed - elephant skin thinned out a bit, skin got softer, redness turned into ashy skin, it was really amazing. Of course since then Ive been flaring a lot but that's par for the course. My baseline is much better though. I'm still super itchy and my skin is quite sore (I am flaring right now) but I know that it is so much better than before. I even have hope that I might heal in the next year! Dr Rapaport actually estimates sooner but I am skeptical. It's hard to imagine after so much suffering that this will end. I do believe it will take some time to get used to not being "sick" anymore. At the same time, I am itching to live life again. No pun intended, ha! Whereas before, I had no interest. So that's good!

STILL stuffering from the valium withdrawal. It has improved since stopping about 2 months ago but still has a ways to go. Insomnia is my worst symptom - in fact, it is the only symptom that hasn't really improved much. The others - irritability, depression, anger, mood swings, body aches, sweats, muscle twitches, head pressure - have all improved notably. They've gone from occurring almost every day to just 1-2x a week. But the insomnia is crazy....
I've said it before but I'm going to say it again - If you are going through TSW and considering medication to help with the anxiety or insomnia, dont do it!!! Stay away from the benzodiazapines. It is not worth it. It's just another invisible disease that is embarrassing to explain.

Here are pictures of what my skin is looking like or has looked like these past few weeks and months.

Neck has been acting up again.

My elbow crooks are now a problem.

Behind my knee, drying up.

A few weeks later. It's definitely better but is in the "healing pain" stage - where the pain is due to scabs forming and trying to heal but I keep scratching them off bc they hurt too much. Once I scratch them off, I have mobility again and the pain is decreased. Also, the scratching of the scab produces the ooze that acts as a moisturizer for a bit.

Hands are superrrr dry.

Also have this dryness on my right palm fingers, as well as splits all over my knuckles.

All in all, I know I'm healing. It's nice to know I'm at least in the 2nd half of this thing and the worst is behind me. I can't wait to find out if I do have eczema after all this. 

Saturday, August 29, 2015

20 months

I keep starting posts and not finishing them. SIGH. It's just that I'm soooooooo tired. I finally completed my valium taper and am just dealing with the aftermath of that. While not constant (like TSW, it goes up and down with no discernible pattern), the side effects of withdrawal are still pretty shitty.

1. Insomnia - I thought I had bad sleep before!!! HA!
2. Agitation - Sometimes if im feeling bad, even a simple question will make me want to scream. Or cry. Or both.
3. Irritability ^
4. Anger ^
5. Depression
6. Dizziness - this varies in intensity. Sometimes its just a few seconds where the world goes kind of off tilt and sometimes it feels like I have tunnel vision for a few hours. I notice it alot when Im reading and I have to keep closing my eyes to re-focus.
7. "Cog Fog" - decreased cognitive function.
8. Anxiety - I need to be alone alot.
9. Muscle spasms
10. Body aches
11. Sweats

I know there's more than Im forgetting but I blame that on #7! Lol.

MORAL OF THE STORY - don't take Valium to deal with the side effects of TSW!!

Skin is worse than it was during my last post. It kind of cycles in and out of flares every day or so. Hard to tell if it's healing on the calm days. Sometimes I feel like it's so close and then boom, another flare. I think I'm just sort of stuck right now. Same areas: hands, behind knees, jawline/neck are the main, and then there's the inner right ankle, my stomach creases, elbow creases, butt/leg creases and around my mouth is still dry and cracked.

Pics next time. Otherwise this will never get posted!

Thursday, July 16, 2015

Feeling good!!

It's been about 18.5 months since I quit using topical steroids and for once I can report that I'm doing well! My last monthly flare (I have predictable and unpredictable flares - the predictable ones come monthly with my period) was not as bad as prior ones. I actually left the house to run errands mid-flare which I have NEVER done. Even my last valium taper was not as bad, though when I mentioned that to hubby he thought I was joking. It didn't feel as bad! My sleep is still awful. I generally sleep about 50% of the amount of time I lay in bed trying to. So if I lay there from midnight to 10am, I probably slept 5 hours. I wake up after an hour of sleep, then I'm awake for an hour or more, then back to sleep for another hour or two if I'm lucky and then finally when the sun comes up I get my best sleep of about 2-3 hours. Never more than 3 hours. It is SO ANNOYING. And you would think id be tired enough to nap but most of the time I can't fall asleep when trying to nap either. I'm bathing twice a day and trying to get an hour of sun a day but have been averaging 3 days a week. Even so, my skin feels okay! Honestly it's probably the best it's been since I started this crazy thing. I really hope this trend continues.

Thursday, June 18, 2015

Almost 18 months - pic update

Short update, mostly pictures.

I saw a commercial the other day for a clinical trial on eczema. Most of us in TSW know about the biologic Dupilumab but there is another trial going on for Tralokinumab. I don't know exactly how they work but I think generally speaking they block the "inflammation" protein that causes eczema. I sent in my information because I thought why not get some info but the office is over an hour away and honestly Im too scared to participate in a study where the long term side effects are unknown. Especially since I want to get pregnant right after this is over. Plus Dr Rapaport thinks I'm halfway done with full functionality to return next year. So I dont want to trade in one problem for another. I've made it this far, I can do this.

Pics of the last month in rough chronological order:

Cheeks oozing after itch fest

So dry when flaring

Calm after a flare

Knees are the worst. I have to hop down the stairs like a one legged pirate.
 These last ones are from yesterday

Hands are SO dry and hurt most during and after baths

So that's what 1.5 years of TSW is looking like for me!

Sunday, June 14, 2015

17.5 months

What's new? Same old here. My skins been flaring, as usual. Sleep sucks, as usual. The only difference is I'm up NY for the next few months. This has pros and cons but the biggest are that it is cooler here than in Florida, though the sun is not a constant. So before I was taking sun every day whereas now I haven't been able to. Oh well, it is what it is.

The last flare put me on my ass so I reached out to Dr. Rapaport again. It's very easy to lose sight of the end game so I neeeded a bit of reassurance. Before I get to what he told me, I want to share that he is starting a blog! I think that will be an invaluable resource to those of us going throug TSW as well as spreading awareness. Very exciting. Anyways, I was worried that perhaps my TSW was a combination of Red Skin Syndrome and real eczema but Dr Rapaport assured me that is not the case. He reiterated that I will not have eczema once is is over but Im skeptical. He advised that I should be taking more baths and more sun. Since doing so, my skin has definitely improved. Despite the fact that he wants me to take immunosuppressants to finish out he TSW (I refused), his advice does always lead to an improvement in my skin. He also reassured me that all these swollen lymph nodes are totally normal. The thick skin on my hands, known as lichenification, is not TSW, he said, but a result of excessive scratching which totally makes sense since I use the rough skin on my wrists and hands to rub scratch rather than using my nails. Currently, the back of my legs are the biggest problem. The back of my knees up to my butt are scabby and trying to heal but become so tight and itchy that I rip off the scabs in order gain some mobility. It really hurts to walk. My hands have been quite bothersome as well. And of course, my face and neck are always a problem. Light oozing has returned if I scratch too much. But the sun and a bath usually dry me up nicely.

I'm still dealing with the Valium tapering as well. It is brutal. I always feel like death 2 days after I drop down. Only 5 mg to go, which I've read can be the most difficult. But then I will be done with these damn habit forming drugs and you better believe that I will NEVER take them again.

Will add pics to this post later on.

17 months!

I am SO glad this last flare is over. Even after my last post, I continued to flare until about a week ago. I honestly thought it would never end. It was the worst flare this year, for sure, but when I look back at pictures, it doesnt look all that bad. Same goes for my pre-TSW skin. I look back at pictures and wonder why I'm making myself suffer through all this because I looked normal. Then I remember I spent years trying to control my increasingly out-of-control eczema, trying different diets, spending lots of money on different doctors...Even before TSW, I was considered high maintenance due to all my special requirements. I was always hot so needed the a/c on blast, couldn't be outside for too long bc the sweat would irritate me, I often had to leave events because of an itch attack, could never bathe my son, etc. Even if I had wanted to continue using steroids, it wouldn't be an option. They did nothing for the last few years leading up to my withdrawal. Literally, nothing. So with my skin already being addicted, withdrawal was truly my only option. This is what I have to remember during my flares. And then as bad as my flare was, it died off just as quickly.

Thursday, May 7, 2015

quick update - 16.5 months

Ive been flaring badly since my last post. Today is the first day my skin feels a bit calmer. Hopefully it continues. I don't know if this was your run of the mill tsw flare or if I flared because I ate gluten. Ugh. I didn't mean to and I'm so mad that I did (thought it was gluten free). I try to stay mostly paleo but it's not easy when you're out and especially if someone goes out of their way to get me something gluten free then I really cant turn it down! The last time I ate gluten was last summer and I flared SO BADLY but there were other potential contributing factors so I cant say definitively that it was the gluten that did it that time. This time I really think it is though. I itched like I havent itched in sooooo long. That bone deep itch that drives you crazy. And I cried, alot. These days I only cry bc of the valium withdrawal but this time I cried bc of my skin. My hubby made me start drinking my veggie juices again, this time with ginger added for its anti inflammatory effects. Maybe it helped? I dont know, all I know is I AM SICK OF THIS SHIT!!!

Friday, April 17, 2015

Almost 16 months TSW

I'm 5 days away from 16 months off topical corticosteroids. I'm flaring. And im sick. I'll start with the skin.

Skin has been hurting quite a bit. Specifically, behind my knees and my inner right ankle. My hands are also bad and my face has been very itchy. Rash has spread to my chest area and the folds of my stomach when I sit, as well as the folds of my elbows and upper legs. I know this is par for the course but it still sucks. 

My knees don't even look bad but they are the most painful right now for sure. It hurts to walk or extend/bend my legs. They look like plastic and the skin there is very thick. It feels like a really bad sunburn and I only get relief when I scratch it raw bc then it's not so tight and I have some mobility. So it's an ongoing cycle. 

I think my sleep needs are changing again. Lately I'm having a hard time waking up with the baby. Hubby has been getting him to let me sleep in a little. I was taking a nap every day but find that when I sleep in, I'm unable to nap (even though I feel dead tired). So I just lay in bed and rest while the baby naps.

I've also been sick lately. Not sure how to explain it because I'm not exactly sure what it is. I have about 10 swollen lymph nodes and the day after they popped up (about a week ago) I started feeling awful. I could barely move or do anything. It made me feel like I was back in the early throes of withdrawal which is super scary. No energy at all. I cried multiple times walking up the stairs because it took so much out of me. I think I'm feeling a bit better but the lymph nodes are still swollen and I still feel sick at night. Because of the timing that I always feel worse, it could be the valium withdrawal. Since my last post, I didn't taper at all because I was having such bad withdrawal symptoms. After doing a bunch of research, I realize (once again) that I likely got some bad information from my doctor. He said that I could alternate taking and not taking the valium every night until I stop taking it completely. That is what I did for the first 20 mg. I alternated 10 and 20mg until I dropped it down to 10 (probably over a month, maybe less). Apparently this is NOT the way to do it and doing it too fast can even lead to a more difficult withdrawal. One is supposed to drop 10% every week or so and I did this double, if not triple, speed. Additionally, one should never increase dosage after dropping it. So his "alternating" recommendation was completely wrong.When I brought in my own taper schedule based on research I found, he just said "Oh, this looks fine". Gee, thanks! He didn't even know that valium came in smaller doses than 10mg. Sigh. Nor did he ever warn me of any withdrawal effects that might occur. Why is it that if there is a small chance of a negative side effect, doctors don't see it necessary to disclose this information? Just because it's not the norm doesn't mean we shouldn't be warned or that it might not happen to us. Case in point: TSW!!! Grrr, anyway. I'm now tapering by 1 mg every other week as is the PROPER method. Hopefully this will alleviate some of the withdrawal symptoms but I won't hold my breath. With this schedule, I will be done tapering in October with the likelihood of lingering effects very high. If the rest of the valium withdrawal is anything like it has been so far, I will be pretty useless the next few months. I hate this!!! I just want to get on with my life already. 

Sunday, March 15, 2015

Benzo withdrawal

Valium is a controlled substance I have been using to treat anxiety throughout this process (prescribed by a doctor of course). Now that the worst is (hopefully) behind me, I am weaning off all controlled substances. I was also on Vicodin and Gabapentin (not a controlled substance but had withdrawal effects nonetheless). Currently I'm at 10mg of Valium, down from 30 mg. I didn't really feel like posting about my skin (it's the same - up and down but generally nothing I cant deal with) but needed to post about this in case it might help someone else, as I was unable to find many people discussing this. I have found it SO difficult to withdraw from these medications. I thought that after withdrawal from topical steroids that nothing could possible compare. Boy was I wrong. This stuff really messes with your head. And body. Every single day, I experience severe anxiety, chest pain, nausea, depression, weakness, muscle aches, muscle spasms, brain fog, irritability, and just an overall sense of malaise. It comes and goes, as is normal with benzo withdrawal, so for the most part I deal with it by talking myself through it. I know its temporary but sometimes I just cry and cry, and hubby asks me if I want a valium or if I need to slow down the weaning process. No! I know he just hates to see me suffering but I also know that that would only prolong the whole process. And I don't think I could possibly take it any slower! So if you're going through TSW and considering using medication to cope, I would weigh the pros and cons. I don't know if I would have been able to get through the early stages without meds but if you think you can, I would definitely attempt to. Otherwise be prepared for another difficult withdrawal process.

On another note, I do seem to be healing within. I got my lab results back about 2 weeks ago. I am no longer in adrenal fatigue and my body is producing more cortisol. So I know my body has the capability of returning to normal if it is producing its own hormones after a lifetime of not really having to. Which is great news! Alternatively, I still and likely always will have Hashimoto's (a type of hypothyroidism). This sucks because one of the main symptoms of Hashimotos is fatigue, which has always been my biggest issue. I will remain hopeful, though, until I am done with TSW because I truly believe that most of my health issues are caused by the TSA (topical steroid addiction). Plus, I wake up naturally every morning by 8am which a year ago would have been unheard of. A year ago, I was lucky if I woke up by noon. I still wake up once a night for an hour but Im used to it. And I still need about an hour or so nap a day because I only get 6 hours of sleep at night. I imagine once I'm done weaning off the Valium, I will try to get on a normal sleep schedule. But based on what I've read, one can experience withdrawal effects for up to 6 weeks after complete cessation. So I won't be in a rush. 

Im still vitamin D deficient, as well as magnesium deficient. I still have leaky gut which is no surprise. The vitamin D deficiency on the other hand was a bit of a surprise considering how often I am in the sun. In south florida. Where the UV index is high. Oh well, supplement I will. 

Otherwise, all is well. My skin only drives me crazy occasionally. When I do have energy, I feel amazing and it's a little peak into what my future holds. Oh! On a personal note, my husband and I are embarking on a really exciting journey - we are building our dream home! Which is perfect timing because it should be done in about 2 years at which point I assume I'll be completely functional. Even if I'm not completely healed by then, as long as Im fully functional, I'll be happy. Plus, it'll be the perfect time to get rid of all my "eczema clothes" and lotions and potions that I've accumulated over the years. I can't wait to take a picture of all the crap I'll no longer need! Very exciting indeed. 

Monday, February 16, 2015

TSW Day 420

Another month gone by. I've been flaring on and off since December but nothing crazy. I had a great month around October/November and would probably say that was the peak (condition of my skin) of this whole process so far. Adding to the recent flares have been a few bouts of colds which seem to linger and never fully go away before another one attacks. I think my immune system is still suppressed, hence catching every single cold I come across. Additionally, detoxing off all the drugs I was taking is much more difficult than I thought it would be. I'm only posting today because I'm having a good day. Some days (or hours) Im incredibly sad and feel overcome with despair, while others I'm shocked by the sense of just feeling normal. My skin is super dry on good days; red, irritated, and itchy on bad. I rarely ooze and if I do, it's minimal. Rarely do baths burn like they once did. Truly the hardest part now is just waiting to live a normal life already. Its been over a year and there's so much I want to do! I'm sick of being home when I feel crappy and I'm sick of being tired all the time. When will the adrenals heal?? I just got some more bloodwork done, should hear results back later this week. Can't wait to see the results because the last round of bloodwork I did was at the very beginning of TSW. It was that doctor who told me to get off the topical steroids as I would never heal my eczema while suppressing the immune system. So I'm very interested to see how the results now will compare to the first ones. Will my adrenals have shown improvement? Will I still have leaky gut? Will I still have blood sugar issues?

My current regime includes getting around 30 minutes a day of sunshine, eating a healthy whole foods diet, taking probiotics and omega 3s, taking a nightly bath with no moisturizer, and trying to get 8-10 hours of sleep in a 24 hour period. That means I'm taking a nap on most days again. I usually get around 7 hours of sleep a night and then another 1-3 during the day, depending on if I'm flaring or not - I sleep much more when flaring. I still wake up once every night and then fall back asleep within 45 minutes. I am taking 20 mg of valium (10mg at bedtime, another 10mg when I wake up in the middle of the night) and alternating between 5mg of ambien and 5 mg of melatonin a night. Then I take 25 mg of benadryl (aka sleep aid) when I wake up in the middle of the night. I was at 30 mg of valium and 10 mg of ambien & melatonin so at least those have decreased. I'm waiting another 2 weeks to continue detoxing off valium because I have family coming in town and do not want to be a weepy mess when they're here. I'm fully off vicodin and gabapentin (hooray!) and let me tell you, that was not easy. I seriously considered checking into a rehab center for a few days, that's how bad I felt. And I took it slooooooow. I can't believe how much it affected me mentally given how slowly I decreased my dosage. But at least I'm more than halfway done detoxing! Anyway, below are 2 pics from yesterday. Nothing too bad, just shows the dryness. My worst areas are still behind the knees and top of wrists. 

I blew up the face pic bc its hard to see but my skin is very bumpy. Its almost like raised patches of dry skin


Monday, January 12, 2015

TSW day 385

In my last post, I forgot to mention some things. First of all, I forgot to list lack of sun as being a contributor to my flaring. I totally forgot about this but its such a major component! Because I was so busy during the holidays, I didn't have much time or desire to lay out in the sun. I know, tanning is so difficult, right?! Just kidding...but it has become a chore. And having re-instituted my daily tanning sessions, I've seen my angry skin slowly calm down. I'm also noticing that my energy levels are just so unpredictable, as is everything else about this process. Some days I still feel SO tired its crazy. Then other days I have boundless energy. For me, I find this difficult because while on the outside I look so much better (thank God!!) I still feel like crap on the inside. So most people assume that I'm done "detoxing" from the steroids when in fact I really do have another year ahead of me. If not more. I really want to start exercising again but my skin can't handle sweating yet. I find myself wanting to do so many things but I'm held back by my skin. So for now, I just plan for the future. I think about all the fun things I'll do when I'm healed, what kind of classes I might take, and hopefully try to start putting some of the plans into action slowly. I'm considering going back to school for my Masters, but definitely not anytime soon as I don't want to prolong my healing by adding any more stress than necessary. I've also got baby fever but that will also have to wait. As for now, my hands are the worst off, which really sucks. I can't do anything for myself that involves my hands, which is pretty much everything. I have to have someone else bathe my son, chop up all the food I need to cook, run errands when I'm not feeling up to it, etc. Im lucky to have help though so for that I am grateful. At the end of the day, this entire process has been a huge life lesson in gratitude! Lastly, I'm down to 100mg/day of gabapentin now and about an average of 1mg of vicodin/day. Still feeling the side effects of coming off these drugs. Can't wait to be done! That's all for now. Pics next time.