Approaching 11 month at top speed

Yip folks eleven month is just around the corner for myself; 3.02.15 to be exact. Not much to report back I'm afraid. I've just been going through the withdrawal cycles while getting as much recovery time as possible. Took two weeks off from work in the middle of January there to help with the healing. The winter/cold weather has been a tad harsh on the old skin.

Keep on debating if I'm a slow burner or just haven't peaked yet. Mini flares continue EVERY day. Face, neck, hands and legs are the most common areas of discomfort. The awful night sweats have dissipated at the moment thankfully. Still have insomnia although taking Atarax every now and again helps (don't wanna build up a tolerance you see) energy levels fluctuate also.

Went to the Dermatologist recently to acquire about the possibility of starting Cyclosporine the immunosuppressant. Now I know the side effects are pretty hard core but it's getting to the point that I have no quality of life. If I'm not working I tend to remain in the house climbing the walls, ha ha. Sometimes I visit friends but my energy dictates that.

After doing a ton of research about Cyclosporine I feel the positives out do the negatives. I've read about people getting there lives back on track while taking the drug which is obviously very appealing. Even though the symptoms are still present there not as severe as the regular withdrawal phase. I miss getting a proper good nights sleep. I miss playing sports and hitting the gym. I miss going out and having fun with my friends. I feel like I'm in a stagnant period with no end in sight. My plan would be to start the meds and remain on them until the better weather returns.

Hell they might not even work as not everyone responds to them. I just feel it's worth a shot to try them out and get a break from the horrors that withdrawal offers. Will keep you posted as always anyway.

Below are some images of my troublesome hands.

Take care TSW friends. Speak to you soon.

Gary

Onwards I go...

Just sharing an update that I posted on the Facebook support group from earlier today.

"Just shy of ten month into withdrawal.

For the past week or so I've been feeling tremendous!. Not one for gloating but it's been about six month since I've felt this great and wanted to gloat a wee bit so please forgive me 

Ok, ok my skin is still nowhere near healed. Still going through all the symptoms like flaring, dryness, flaking, redness, etc. However, internally I'm feeling normal again. Perhaps my adrenals have levelled out?. Cause let me tell you it wasn't fun living life like a 90 year old man. I had no energy, suffered terrible insomnia (getting up to six hours sleep a night now), mood was at an all time low as I'm sure most of you can relate too.

Without a word of a lie TSW has been the toughest challenge that I've faced in all my 31 years on this planet.

Who knows what's in store for me further down the line. It really is a cliche but what I have learned is that with withdrawal you really do have to take it one day at a time.

Special shout out to everyone in the group. Without you and your updates, strength and encouragement I would be a lost soul struggling alone with this hell.

So a BIG thank you to everyone who has been there for me. You all have a special place in my heart".

Hugs of the healing variety,

Gary

Awesome and very articulate video

Hi friends,

Just sharing this awesome and very articulate video about topical steroids. The video includes the history of TS & a detailed withdrawal fight from the fellow sufferer who made the video. He goes into great detail with all things related to what we're all attempting and currently going through.

In the mean time I will update my own progress shortly. As always, thanks for stopping by.

Hope all is well at your end.

Gary

*Video update* Closing in on the 8 month phase of withdrawal

Was in a bath this evening and got inspired to make a video with my progress so far. Skin continues to slowly but surely get there, where ever there is...

Had an amazing few days of healing and wanted to share. My last post only a couple days ago was a bit low for me with a really bad flare intact. Feel as though I'm contradicting myself here with this update, ha ha. Ah well. Onwards we march.

Up and down like a roller coaster or shoveling snow when it's snowing I think best describes this maddening condition. Truly mental what little time it takes to get to a calm stage then back to square one with the low times.

Face has healed up nicely since the beginning of my second big flare. Or could it be that I'm a "slow burner?" I pray it's the first. Hoping my symptoms have peaked and can now look forward to the gains that time and comfort offer.

Thanks for stopping by and viewing guys. Appreciate all the support and kind words that each of you have given me over the course of this quite literally, living hell.

Hoping you're all getting there along with me. Keep going! and remember time and comfort will get us ALL over the line to happy times and normal skin.

Healing thoughts and hugs,

Gary

Just shy of eight months

Eight months is just around the corner for me and withdrawal (3.11.14)

Not getting any easier I'm afraid. Entered the dreaded second mega flare that other sufferer's talk about. I know this because when I first started the withdrawal my face was the first area of the body to react. It calmed down as the flare spreaded south as you can see from previous entries in my photos.

About two weeks into the six month stage my face started flaring again getting red with those small, opened wounds. Then the ooze returned. Currently I get one or two clear facial days followed by a flare. The rest of my body has caught up with my face. Hands and legs are the worst parts affected when my face is calm. Right now as of writing this blog entry my face, back of neck, hands and legs are a mess.

INSOMNIA is still apart of my life. Topical steroid withdrawal isn't all about the skin. Internally it has massive repercussions. But you adjust and adapt... strange how this happens isn't it?. When not at work I sleep for 3 - 4 hours during the day after a restless night. Sometimes I get the odd one or two hours nap during the night but in all honesty this is an extremely rare occurrence.

The God damn night times are horrendous as I'm sure your all aware off. I kid myself on by going to bed. Tossing and turning as I scratch myself to pieces. Morning's are always the worst with an inspection of the skin while my life saving epsom salt bath is running.  

The usual withdrawal symptoms are all present. Dry, itchy, red plastic like skin is what it's all about. I have a lump behind each nipple too (got the OK from the hospital, not a serious issue), swollen lymph nodes all over my body... even one each side of my jaw that has left me with bald spots in my beard due to scratching (I try not to shave my beard as it irritates even more if I do so), weight loss no matter how much food I eat, chronic fatigue due to the insomnia, mood swings, etc. The list goes on!.

Got a birthday party on the 8th of November that I'm looking forward too. Had to cancel attending a wedding last month as  my skin was in the pits. Fingers crossed my skin gives me some rest bite for the birthday;)

Below are some graphic images of my facial flares... you've been warned!.

Taking it one day at a time. Hope you're all doing well out there and withdrawal is treating ya good.

Gary

Day 197 - Freddy's Revenge

Ah, the dreaded facial flare has returned...

Thankfully it's nowhere near as angry at present as it has been previously (Day 90). Not wanting to be pessimistic but you should know by now how the nature of this beast works. The withdrawal certainly has a twisted sense of humour with regards to getting healed. It really is one step forward, four steps back.

Insomnia is still my biggest nightmare (pun intended). Was up all night yesterday after work. Slept during the day after my bath today. I've tried to keep my sleeping pattern in sync with the day/night but it is pretty useless. The body has been totally messed up with applying the steroids. I guess I just need to let it do its thing and let it remember how to switch off when its night-time.

Current list of symptoms I'm experiencing:

Intense itch/scratch cycle 

Head to toe full body sweating

Irregular body temperature

Uncontrollable face slapping

Mood swings

Insomnia 


On the plus side with each new passing day I feel like I'm getting back to my old self again excluding skin, obviously. Went out for my first proper night out in six months last Friday (12.09.14). Was drinking cider, shots and strange & wonderful cocktails all loaded with sugar.

I didn't itch on the night thankfully but the next day was a scratch fest as you could imagine. Ended up super drunk as my tolerance to alcohol has diminished! :). I also got a decent nights sleep because of the severe levels of intoxication that I was under, ha.


Here's some pictures from today when I got home from work before my bath below.

So there ya have it folks. Day 197 for me. Wishing you all comfort and healing thoughts at what ever stage you may be at.


Gary 


BONUS PHOTO BELOW

Powerful healing!.

My face as of now while posting this update to the blog. This is after getting some sleep during the day, an Epsom salt bath and relaxing at home #powerfulhealing

Six month milestone in the bag

Hi gang. How you all doing out there today?. That's me reached the six month milestone of my withdrawal. Done a video. Let me know how you're all getting on.

Healing virtual hugs,

Gary.