Friday, June 28, 2013

Happy Canada Day with some skin updates!

Well it's Friday! Woot! Woot!  And here in lovely Canada we are having a long weekend celebration Canada Day.  I am excited for the weekend!  This week was busier than I would have liked. So I am eagerly waiting some much rest and R&R! 

Yesterday I had a strange burst of energy though!  I have been eating quite well this week and taking fish oil.  So I am sure that has something to do with it!  It felt so amazing to have energy.  I usually feel tired and sluggish every day. TSW was really taking a toll on my energy levels.

Anyhow I feel back to normal energy wise.  I hope this lasts!  I can't say sleep has improved.  But we really just can't have our cake and eat it too?  Uggh does that saying even make sense? Lol you better believe I am eating my own cake...

Alright on to my skin.  I haven't paid much attention to my skin in 48 hours.  It's been great!  On the forum Ms Eczema Excellence gave some awesome advice.  She said ' act like you would if you had perfect skin'. I loved that strategy!

Today I will put that to the test.  I am going to an event and this will be the first time seeing everyone since TSW.  Well this particular group of people.  I plan to have all the confidence in world and put Ms Eczema Excellence's advice into practice!

As for my skin... Well it feels fine.  I finally found a moisturizer I can tolerate. ( sorry Lisa no more 'no moisture' for me). I use is quite sparingly though. It's Aveeno unscented baby lotion.  I originally would feel a slight burn for about 3 or 4 seconds. But no more.  It feels so nice to feel moisturized and smooth instead of dry and cracky.  At the time though dry and cracky was better than burning and red. Lol the options of TSW. 

I still find myself itchy. I scratch habitually, need to break that habit.  My neck is smoothing out a bit.  Looks much more moisturized. Feels slightly tender to touch.  But I can deal. My arms continue to be problem areas.  But they look better, if you look closely there are scabs and scars here and there. But my darker skin serves as camouflage!    Hands are stable.  Lots of scabs but no ooze.  I can do most cleaning without gloves. I was able to do my hair last night without my hands burning from my hair products.  Yay!  I took some photos. Please remember they always look about 20-25% better than they are.  Due to my phone quality. :(  Things are alright for the moment though skin wise.  Hoping to be going into a long quiet season! Lol.

Have a wonderful weekend all you kind folks! 

Thursday, June 27, 2013

How to not care, when you do care!

It always makes me chuckle when people say 'I don't care anyhow'. It makes me chuckle because well... They do care.  I have quoted this phrase a number of times.  And each time I bellowed these strong words my inside cried 'LIAR'. But there is a way to get to a place where you care less and less. A much needed place to be when going through topical steroid withdrawal.

Growing up I was always lavished with compliments by friends and family on my looks.  Although I suffered eczema for the most part TS suppressed it quite well.  For every skin ailment my parents were faithful to take me to the doc for a prescription.  Even for acne, I was taking tetracycline for my 3 pimples at age 11.  Crazy!  So my appearance was a big thing.  Even from such a young age.  Suffice to say TSW has been a real kick to the ego.  And it has taught me plenty about the shallow culture I have grown up in and put me on a quest for inner beauty.  While all that was fine and dandy my appearance was still killing me. 

Every day it is the main focus of my mind.  Never mind anything else.  It's almost as if I was letting life stop during TSW.  Of course I had my good days and have kept chugging along, but in my mind the battle was lost.

That is until yesterday.  I briefly posted about it in the ITSAN forum, but wanted to give some I guess tips on How to not care, when you really do! :)

1) Ditch the mirror- at this point the mirror is my enemy.  I only look there when I have to go out of the house. I find the less I look at myself the happier I am.  I am reminded of who I am, not what I look like

2) Cover up if you can- this can be tough depending on what stage of TSW you are in.  But I tend to wear long sleeves, scarves ( even debated gloves lol). This is when i am at home. It helps me forget what my skin really looks like. If you are house bound this is great.

3) Don't think about your skin.  Ha!  Seems a bit impossible. By this I mean, develop your routine and leave it at that. So if you need to take a bath, exfoliate apply cream then oil, try and be scheduled about it. Make it just a regular part of your day, not ' your day'.  I find I was making a huge deal about caring for my skin, such focus would go into getting the bath the right temperature. Just my mind set was so focused on skin.  So when you are dealing with you skin think of it as a step of your day.  While you're showering think about what you are about to do next.  Not skin related.

4. Go out and be liberated.  Show of your redness with pride. I have tried hiding my skin when I go out only to have someone notice and make me feel more awful because I was attempting to hide it. Here in Canada it's summer.  I was wearing all long sleeve shirts outdoors... No more. I find if I just let my bad skin show I feel better. It is what it is... And I am rocking it.  Yes sometimes you get the odd look but it doesn't hurt because you aren't insecure about it. 

Anyhow. That's my two cents!  TSW really is teaching me so much!  What a blessing!

Below are some before and after Pics of my lips. Over the weekend TSW spread to my lips!  So cute! I couldn't even believe it.  I have never had it on my lips... Not in my entire life.  Ah well with some Vaseline and patience it cleared a bit :)

Took me like 10 shots to get the after photo. Uggh lighting makes these things hard. Anyhow it's not a crusty mess anymore :). But all around my lip are is discolored and flaky.  What can you do!  I do have an awesome concealer that helps me when I go out. It can look a bit caky over these spots but it is still an improvement :)

Thank God for MAC cosmetics... They get me through lol all the discoloration!

Wednesday, June 26, 2013

Blogs messed up!

I had been posting content for my skin blog my other blog! Lol.

I deleted them now.

Anyhow a couple thoughts

I can't believe I have managed to go five months without topical steroids. Wow, there was a time I couldn't make it a couple days!

Skin is much better then it was a couple days ago.  Moisture seems to be coming back thankfully.  We will see how long that lasts though. Still look like a reptile. Hehe

I started taking fish oil so that could be why?
Just kidding!  But I do think that its helping my skin look more moisturized. 

Hand inflammation is down..
Hopefully am out of the woods as far as this flare is concerned :)

My cheeks have resumed lots of moisture.
Neck isn't as scaly.  This thing is so up and down. Good today, bad tomorrow.  Vice versa.

We will see what the rest of the week brings.
I have also noticed from shoulders down( not including arms) my body has been. Minimally effected.  When I first withdrew I got it everywhere but it cleared up quickly.  I also feel these areas are always covered up and out of my reach.  My legs are pretty normal skin wise.  A bit dry but normal.

Thursday, June 20, 2013

Waiting for a Miracle

Well I am 5 months in!  I guess now its too late to turn back! Hahaha!  I am believing to turn a serious corner come month 5.  I have noticed my necks inflammation has calmed down.  The dryness is still killer. Also I don't moisturize so that is probably why!  It's just once the moisture hits my skin, so does itching, redness and bumpies!  Not so cute for a summer day!  Anyhow my hubby came across this article last night regarding anitbiotics and eczema

http://www.guardian.co.uk/society/2013/jun/20/children-antibiotics-more-likely-eczema

Check it out, its quite interesting :)

Tuesday, June 18, 2013

A bit better

Well I am approaching month 5.
The last couple days my skin has been a tad bit better. I have been using zinc as I have been staying away from creams. Zinc tends to dry out my ooze nicely. I really can't believe I had made it this long without my trust betnovate!  That stuff used to be my best friend.

I remember when I would run out of my tube, panic would strike.  I would call the doc asap.  I usually had tons of repeats, but as the years passes doc wanted me to come in for the prescription.  I remember the night before I would go to the doc I would be fantasizing about how I would have my meds the next day. The second I had it in hand I would take a long hot shower and scratch myself silly. And then literally slather hand fulls all over my body.  It would tingle and burn but I was relieved. I would go to bed and wake up and like magic, my skin would be normal again.  It never dawned one how strong those drugs were to do such magic to my skin within 24 hour period. I never gave it a second thought.

  I do remember 4/5 years ago getting sick of the monthly doctor visits. I decided to see if my skin could heal itself. I stopped all steroids and of course my skin went berserk. I wish I knew then that it was TSW and my body would heal itself.  About 1 week into it my I couldn't take it any longer.  I was so miserable. And felt so ugly. My hubby and I were only a year or so married. I just felt so insecure.

I remember him taking me to the piano store to surprise me with a piano for my birthday, I was so down the whole time. .I couldn't even be happy because I didn't want to look him in the eye and say thank you. I know now I wasn't ready then for the experience.

Although I still feel ugly, I have grown to learn looks aren't every thing in life.  And not everyone is as shallow as I was. I am not sure why I am sharing this story. But it came to mind. I look forward to the day I have normal skin and am healed.  So happy I never have to endure that horrendous smell of betnovate again! So glad there truly is a cure for eczema. 

It blows my mind there is a cure and the medical community isn't on board.  Perhaps there is a cure for cancer, for aids?  And they are just dragging people along for the ride!
Ah well, in time all darkness will come to light!

Hope you are all well my fellow RSS fighters!

Xoxo
Vee

Thursday, June 13, 2013

A long flare

Wow, so I would say month four has been the worst. The first two months were rough because I was not used to TSW.  I wasn't used to life without steroids. I was notably redder.  But this month takes the cake!  My skin just gets worse by the day. Part of me is glad this is happening, need to get this junk out of my system. But the other part of me is dying inside. Just can't believe I look like this. This morning I woke up with hives on my face!  How attractive lol!
Over all I find myself a bit emotionally numb to all this. I want to cry and break down, but it's hard to.  I have had short bursts of tears, but I can tell I have a lot of pent up emotion.  I am having trouble releasing that.  I want to scream, yell, cry. Yet I sit in silence, scratching myself to pieces.

I want to take my eyes off my pain and look to others, encourage others, help others, but the reality of TSW makes it nearly impossible.  The insane itch and burn make you nuts.  Also all the progress I thought I had made up to this point is dissolving in this long flare, so I am not the most cheery. Hopefully I will turn a corner in month five :)

Tuesday, June 11, 2013

My Skin- 4 months in getting worse

Well I am 4 months in.  This last little bit my skin has been getting worse. I guess now any reserves of steroids are really gone and out of my system and my body is in full blown TSW. I am super dry and cracked. If I put moisturizer I am red and inflamed. I rasher dry and cracked. I look so old.  Rough times. Lol

Saturday, June 8, 2013

WARNING VENT AHEAD

My skin is completely ticking me off! So I plan on complaining for the next 200 words!
In the last 4 days its gotten more inflamed   And my precious healing hands are having their first ever flare since I started TSW!  I am just so ticked.  They are all puffy and ugly.  Rashes have spread, and one section is oozing. Th blisters are back, but haven't popped yet!  Man, what a downer! I am starting to have a very I don't care, bitter attitude towards this. You can feel stuck between a rock and a hard place.  One part of you wants to rush back to the drugs and resume normal living, but you know its only temporary and will land you in a worse spot to begin with.  Leaving you no option but to keep on the track you are on (but at this point not willingly).  Arrggghhh!  I hate that I am so tired, but can't sleep.  I hate that my skin feels so raw, tight and uncomfortable.  And I hate how it looks!

Sorry for the vent guys!  Had to get it out!  One very important part of going through this!  But we do all heal!  PRAISE GOD for that!  I just pray my healing will be super-de-duper snappy!!

Have a great week!  :D

Tuesday, June 4, 2013

CHART YOUR PROGRESS

I was convinced during my last flare (3 weeks and counting) that my skin was not getting better. Other than my hands I didn't realize the progress my skin was making, until I wrote a month to month play by play of my symptoms and then I had a "Eureka" Moment.

So I thought I would write it out for you  kind folks

Month 1-TSW over majority of body, back of knees, thighs, lower back, upper back, mid back, arms, hands(MAJORLY),neck, arms, chest and face.  I had much redness, bumps, hives, redness and discomfort. Burning all day/all night long-living in bathtub.  Sleeping for no more than and hour without waking

Month 2-TSW continued back of knees, lower back, upped back, neck, arms, chest and face.  Redness had died down, still very itchy/dry, hands got unbelievable better. Severe itch and dryness.  Sleeping for about 3 hours a night.

Month3-TSW localized to, upper back-just under neck, arms, upper lip, eyelids and forehead and neck.  Redness down to minimum.  Itch only at night, dryness. Sleeping a bit more, on and off

Month 4-TSW localized to arms, neck and eyelids and upper lip.  Itch continues at night-but able to get atleast 5 hours . Hands much much better



Is anyone else noticing the pattern?  I am healing much more than I even realized! While my arms , eyes , upper lip are still suffering it's much better.  SOmetimes we get so fixed on the negative that we miss the tiny miracles happening day to day.  And considering I had TSW from my knees to my head and now only have it on my arms, eye lids, upper lips, and neck (and mildly hands) thats a HUGE improvement

Ignore the photo-I am taking a photo of my hair growth, but  as you can see my hands were  all bandaged up because they were soo bad. I couldn't even wash my hair-my dear hubby had too!



Anyhow, I guess the moral of the story here is that you need to track your progress because chances are you are healing but you don't even know it.  Also we have a tendency to forget how bad things were to begin with, so when we get a flare a couple months in its seems like we are back at square one!  But we really aren't.