Doing okay

It's been 2 weeks since my last blog post. Alot has happened since then. As usual, leading up to my period I flared horribly for 2 days with lots of crying and despair. I always feel like I can't take one more single second of this torture during that time of the month. It feels like it will never end, I will never heal, and all of this is for nothing. But then my period leaves and I feel okay again. Skin is SLOWLY healing since then. Those 2 days were brutal though. Elephant/lizard skin with uncontrollable itching and no sleep whatsoever. Nonstop crying. Sobbing. Ugh. I hate it all. Now I would pinpoint my worst areas as my face (specifically, above my lip and each side of my chin) and my hands (specifically, my wrists now). My neck is healing, though still itches daily. I need to start taking some sun but it's so freaking hot outside that it irritates my skin too much. I should try the early evening time.

Anyway, things that have improved: itching overall has definitely lessened since doing moisturizer withdrawal. I had a bad week when experimenting with Dr. Fukaya's clofibrate ointment and wonder if I should give it another shot eventually but for now, Im sticking with MW. Redness is definitely better. Skin is now a blotchy pink. Overall, I think the worst of this process is behind me. That doesn't mean that I don't have some hard times ahead of me yet but at least I know when to expect them.

Oh, besides my menstrual cycle, STRESS makes me flare. I mean sometimes I can definitely link my diet to my flares. But stress makes me flare immediately whereas diet is kind of a guessing game bc of the time difference between eating and flaring. My most recent experience with this has been my son getting a case of Hand, Foot, Mouth disease. It started with a fever last week and turned into a full body rash complete with blisters and major crankiness. As soon as I felt the heat on his forehead, the itching started (for me, not him). My poor baby. He's such a champ. He can take pain much better than mommy. So we're still dealing with that and for a little bit, we were worried I might catch it. It is mostly a children's disease lasting about a week but adults with compromised immune systems who haven't had it before stand a chance at catching it. Luckily it seems I haven't but I did get the headache & sore throat portion. Sigh. It never ends. Oh well, we're all champs around here so we'll get through it.

On a positive note, have I mentioned how grateful I am for life in general? I know one day this will be behind me but I will be left with gratitude. Gratitude for the people around me with whom I have been blessed, grateful for my health, and just grateful for all the little things that I once took for granted. Before this, I would have looked in the mirror and considered myself an average looking girl, even called myself fat or gross at times. But after this, I think I will be able to appreciate my beauty and my body for being amazing and just mine. After all, if given by God, how could it not be beautiful? That's another thing. I want to get closer to God. Like alot of other people suffering through topical steroid withdrawal, I have spent many sleepless nights or crying itching fits praying to God to rid me of this poison. And if it is not His will to do so yet then PLEASE give me the strength to get through this. And so far, He has. I'm here, aren't I? So after this, when I'm actually not embarrassed to leave the house, I'd like to join a bible study and start attending church. Actually, there are alot of things I want to do when this is over! Yoga, beach, take my baby boy on fun adventures every day, and let my husband sleep in again! Oh boy, I can't wait.

On a less positive note, I missed 2 baby showers and 1 bachelorette party these past 2 weeks. Bummer. I have another baby shower and bachelorette in a few weeks and a wedding the month after that. I really really really want to be able to attend ALL of these. But at the very least, I must attend the wedding. So I'm hoping at least my face clears up by then. If only I could just stop picking the scabs!!! Does anyone out there have tips on how to avoid the picking?

Will post pictures next time. Happy healing!

TSW day 128 (I think)

Okay, so the clofibrate was a fail. I guess what works for one doesn't necessarily work for another. I used it for 5 days on my fingers, top of my hands, and about an inch of my wrist. On the last day, the application burned so bad that I though "F this"!!! If I hadn't noticed improvement yet, I didn't expect to and might as well go back to full MW. Unfortunately, the next few days my hands hurt like crazy. I definitely learned my lesson!
On top of that, my energy levels have returned to normal (low). I'm going to try and look at it in a positive way and just assume that that's what I have to look forward to in the future. I'm guessing I'll have a few days here and there where I feel really energetic and eventually there will be more of those days than sleepy ones. All in God's time.
Also, I'm doing the liver detox per my functional medicine doctor. Can't say I've noticed any difference, good or bad. The shake I have to drink is disgusting and I have to add so much fruit & stevia just to get it down that I almost feel like it defeats the purpose. I also start my week of vegan eating tomorrow. Not exactly looking forward to it, though the prospect of eating lots of carbs is exciting. That also means I have to drink this shake 3x/day....yuck.

Here are some pics of the last few days. My hands have the texture of sandpaper and good ole elephant skin.

I can't stop picking the scabs above my lip!! So now I've taped gauze over it in an attempt to let it heal. 

Month 5, Day 1

Woohoo! I'm in month 5! Which means I'm that much closer to healing. I feel optimistic today which I think is due to my increase in energy. Now it's only been 2 days that I've noticed some extra energy but hey it's better than not having any at all. I'm still not getting to sleep until around 3:30am and sleeping until 11 with one wakeup around 9. And I don't remember the last time I took a nap during the day. Not for 2 weeks at least. Progress! The itching is definitely not as bad as it was when I was moisturizing but I do still get my itch attacks. Now my wrists/hands are the worst, followed by neck/jaw/cheeks. I have been using the clofibrate ointment on a few select areas, as mentioned in my last post, but haven't noticed any improvement. If I don't see any in the next week or two I'm just going to give up on it. What works for one clearly may not work for another. Oh well! I guess I was hoping for a miracle cream but those were high hopes indeed.

So anyway, I'm starting my 3 week liver detox program today, as prescribed by my functional medicine doctor. All 3 weeks do not allow anything processed, no gluten, dairy, or soy, nothing high glycemic and no sugar at all unless a low glycemic fruit. No red meat, no bacon (ahhhh a paleo nightmare), no alcohol or caffeine, etc etc. I have to drink this protein shake which is quite disgusting but at this point, I'm willing to try anything! I couldn't seem to get the sugar out of my diet so this program, or "challenge" as I see it, will push me to do so. I know a lot of people think diet has no effect on this process, and for some that may be true, but for me sugar is definitely a trigger for flaring. And I looooove me some dessert! So I'm hopeful to see how this detox effects my skin!

Almost 4 months down!

Every day is up and down. One day my skin feels great and the next day it sucks. My diet definitely plays a big part in this. Whenever I eat lots of sugar & carbs, my skin flares the next day or two. I feel like I've been in a constant flare since this all started. When will it end?! I'm still gluten & dairy free but my functional medicine dr has me starting a liver detox program. There will be absolutely no processed foods, sugar, caffeine, alcohol for all of the 3 weeks and then in week 2 I will eliminate all meat. During this protocol, I will be taking a shake called UltraClear+ 1x/day the first few days, 1x/day the end of the first week, then 3x/day in week 2 and back down to 2x/day and then 1x/day in the final week. So I'll let you know how it goes!

I also ordered this ointment from Dr. Fukaya called Clofibrate. I saw it on ahfaye's blog (byebyesteroids.blogspot.com) and it seemed to work wonders for her! I'm scared to use it since I've not been using moisturizers at all but I have to try it based on her before/after pics. Anything to try to speed up this process!

Here are some pics of the last few weeks.

The pictures don't really do it justice. It feels alot worse than it looks. My hands have been super itchy and my neck is still driving me crazy. Now my cheeks have been itching alot too and of course oozing a little if I go to town on them. On a positive note, I think my upper lip area is finally starting to heal. I hope to have more positive news in the coming weeks! Happy healing :) xo

Last night was bad

My period is over so I'm waiting for this flare to die down. Today it actually feels ok. I even laid out in the sun for about 20 minutes and was totally fine. A month ago I would not have been able to do that. It would've felt like my neck was on fire and stung like crazy. So it's weird that I feel so good today considering how bad last night was. I had a 3 hour itch attack from 2:30am - 5:30am at which point I finally passed out from sheer exhaustion and managed to sleep for 4 straight hours with a brief itch attack at 9:30am and then slept for another 3 hours. Lately I've been waking every other hour like clockwork, it drives me nuts. Anyway, I go back and forth on whether I think my diet plays a part in my eczema. But it definitely seems like whenever I eat a bunch of junk food (sugar, chips, etc) I have problems sleeping and itch a lot more. It's always the day after a bad night that I eat well and have an okay night. Which leads to another junk food binge the next day and a bad night again. And so the cycle continues. You would think that in noticing this pattern, I would lay off the junk food, right? Well it's really hard! Next week my functional medicine doctor is sending me some detox info she wants me to look over and see if I'm up for it. It'll be some kind if limited diet, I know that much. We shall see! Hopeful for a good nights rest tonight. Again, we shall see!

MW day 42 / TSW day 108

Ugh..............Every single day I've been thinking "I gotta write something on the blog". It's stupid really because I havent wanted to update without something positive to say but then what would be the point at all? This whole process sucks so if I were to wait until I had something good to say about it, then I would never write anything. I need to stay active here so that ONE DAY I can look back and see how far I've come. So here I am. I can't believe I've been withdrawing from steroids for 4 months already. I honestly believed that I would be done by 6 months. That will clearly not be the case. I have been flaring since my last post. I always seem to flare around my period but it's like my skin barely got better from the moisturizer withdrawal, during which I was flaring as well, before it got worse again. It felt okay for like a day and has since felt awful. Im so over this shit. Right now, my problem areas remain the same as before: neck, face, hands. They hurt, they itch, they bleed. The only positive thing I can say is at least theyre not oozing, for the most part. Sometimes the skin right about my mouth oozes and when it does its like even the air touching it is painful. Every so often I get a little cut or two beneath my eye that oozes and hurts like a bitch. I obviously do not sleep at night. When will I sleep like a normal person??!! Back to the flaring...I know alot of people have calm periods and then flare again and each subsequent flare is supposed to be less painful than the prior one. That is not the case for me. I feel like ever since this started, I have been in a constant state of flare. Maybe 2 or 3 flares. But NO definite periods of calm. When this first started, I had the characteristic RED and HOT skin for a few weeks. It sucked but honestly wasnt that bad in hindsight. I looked like I had a sunburn, which living in FL is easy to get away with. At least I could leave the house. Then the itch set in. It was almost orgasmic,the way it felt so good to just scratch all my skin off. Of course as soon as I stopped was when the panic & pain would set in. I think the ooze was definitely the worst part of this whole process, so for that I am grateful to not have to deal with that anymore. But now I am just in constant low grade pain with the persistent itch, insomnia, and scabbing. I have a cocktail of drugs (atarax, gabapentin, unisom, benadryl) that I rotate to try to sleep and calm the itch, none of which really works. Yet if I dont take it, then I definitely dont fall asleep before the sun rises. I know I'm not the only one out there dealing with this though so stay strong everyone!! As hard as it is, I know this too shall pass.

MW day 25 / TSW day 91

In my last post, I said I would follow up the next day but didn't bc there was nothing remarkable to report. Finally, though, I think I can say that I see the light at the end of the tunnel. My neck is definitely better than it was and my face is on the mend. Right above my lip is still oozing and I have some painful areas on my chin/top of the neck area but... there is NO oozing on my neck. Thank God!!!

Since starting, I have seen the overall redness decrease and my skin toughen up and not ooze every time I scratched. I'm still super dry and would looooove the soothing feeling of some type of oil but know it wouldn't be worth it. I can just imagine the heat and then the impending  itch. Definitely
not worth it. Anyway, I'm looking forward to seeing more progress!

Unfortunately, my hands aren't doing so well. On top of them being cracked and sandpaper-esque, I've been having major zingers and that pins & needles feeling all day long. I hate the thought of washing my hands. Or my hair. Or using any hair products. Maybe that's why they're so bad... Hmmm. Will have to change my products. I've been thinking about it lately anyway, this will just be incentive.

Sleep still sucks. Technically, it's better than 2 weeks ago. Rather than not being able to fall asleep until 5-6am, I'm now falling asleep around 2-3am and sleeping until 11am-ish, with 2 wake-ups in between, usually around 5 and 9am. And instead of napping with the baby around 12:30, I now get tired for a nap later around 4 or 5pm, if I need a nap at all. But I usually do.