(12/1/2015 – 12/31/2015)
(Day 641 – Day 671)
Tag Archives: Month
Day 335: End of Month 11
Month 18 TSW
Last Saturday I reached my bench mark of 18 months, however I have been unable to sit down and blog because work has been pretty manic recently with the build up to Christmas and all of this Black Friday malarky, of which I have had to work. Luckily my store didn’t get any aggro and I’m not starting until a little later today so although busy, I’ll have missed the huge rush, if there even is one…
So how am I?
Not great really. The infection came back for the third time however the antibiotics aren’t doing anything. Last night I must have scratched myself raw because I’ve woken up oozing all over my neck, cheeks and ears. It’s pretty grim 
Especially so since I haven’t had any oozing of this sort for a long time. I’ll just accept it as one of those things.
No photos today as I simply cannot be bothered to pick up my phone. So you’ll just have to take my word that I’m not that great. Obviously this is nothing at all like past flares as I don’t get the hives that accompany them any more. Yet it is especially painful today and I can barely move my neck because it is so sore and I’m keeping it moisturiser free. Today will be a fun day at work I’m sure.
Maybe I’ll feel more inclined to post photos later but for now –
Over and out!
Edit:
I changed my mind. This blog does act as my form of diary after all.
Day 387 – Day 395 WHIPLASH End of Month 13 Topical Steroid Withdrawal
I’m a bit behind…. This is the end of Month 13… the end of March 2015….
This post is a perfect example of how devastating TSW can be. The highs give you a false sense of security. Like you’re more healed than you actually are. Then when you flare, it makes it seem like it’s worse than it actually is and you feel devastation. I was feeling great! Skin soft. No pain. MINIMAL itching. Minimal dryness. Spent some time in the sun. (I am only posting the swimsuit pics so you can see how great my skin was). Then, the day after I laid out in my swimsuit, I flared massively. I just wish it would be all or nothing. But we’re powerless and at the mercy of this completely avoidable and unnecessary disease.
Day 387
Day 388
Day 389
Day 390
Day 391
Day 392
Day 393
Day 394
Day 395
Day 671 – Day 701 Topical Steroid Withdrawal Month 23
(1/1/2016 – 1/31/2016)
(Day 672 – Day 701)
Pretty much nonstop flare. EVERYTHING sets me off. ALL food introductions in the smallest amount cause the full body rash. Nothing makes sense.
Pretty much nonstop flare. EVERYTHING sets me off. ALL food introductions in the smallest amount cause the full body rash. Nothing makes sense.
Day 396 – Day 425 Month 14 Fighting More Flares
Month 14…. Some calm skin… Fighting flares. Fighting flares.
This disease is a marathon. Except you never know what mile marker you’re at and you didn’t prepare before hand. And you’re wearing the wrong shoes. Well, for me anyway. I stumbled upon it.
I struggle with staying mentally strong. For the most part, I feel like I’ve done ok. But I’ve definitely reached my limit on quite a few occasions and was drug to shore kicking and screaming by some pretty amazing people. I honestly don’t know what I would’ve done without the Facebook support group.
While I’m still struggling, I can say that I’ve been living. I can slap makeup on-or not- and my skin has been strong despite flares. Until the flare that hit at the end of this month and the beginning of next, I didn’t experience ooze.
Day 397
 |
| Skin was feeling SO calm. VERY little itching at night and was sleeping pretty well through the night. |
Day 398
Day 401
 |
| Randomly started acting crazy Easter afternoon. |
 |
| Slapped some makeup on her… and she was fine… until… |
Day 402
 |
| THE NEXT MORNING… Right after a shower, so it’s totally inflamed |
 |
| This guy is about to start giving me hell. |
Day 403
 |
| Went out with my friend Alan and had an AMAZING time. |
Day 404
 |
| No makeup… |
Day 407
Day 408
 |
| My back just ITCHES in the shower. |
Day 409
Day 411
 |
| Can still put makeup on and look fairly normal |
Day 412
Day 413
Day 414
Day 415
Day 416
Day 420
Day 421
Day 423
Day 424
Day 425
Day 426 – Day 433 Peak and Subsiding of a Big Flare Month 15
Well, I’m finally up to date on my blog. These photos are current. I finally feel like this flare is ending. It was bad by current standards, but NOTHING compared to a year ago this time (WARNING THOSE PICS ARE HARD TO SEE. A year ago I was truly at my worst)
Anyway, The flare is subsiding as of today and my sleep is coming back and I’m hoping that by mother’s day I’ll be feeling pretty good! I also have a LOT coming up in May and June, so I’m praying for clear skies…
Day 426
 |
| Thought it was going away… |
Day 427
 |
| Then the heat. It was so hot and red my fingerprints stayed for a bit. |
 |
| And the iiiittttch |
Day 428
Day 429
 |
| IT was just itchy and inflamed. SO annoying. And SOOOOO dry. |
 |
| Woke up about 3 hours after I fell asleep scratching. The ooze was so itchy. |
Day 430
Day 431
Day 432
Day 433
Day 731 – Day 761 Topical Steroid Withdrawal Month 25
Topical Steroid Withdrawal Month 19.5
Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn’t getting better so I decided to use it again the other day as I need to be able to work. I’m pleased to say doing this has helped to kick-start it and it is working again.
My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.
She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.
I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren’t trialing it as of yet but I would be a suitable candidate if it came about.
When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren’t working for me any more and to my complete surprise she said “Yes, that can happen.” What?! This is the same lady who said the complete opposite last time I saw her. No doubt she’ll say differently again next time I see her but even still!
I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.
Happy days 
Here’s a silly unflattering pic I just took to showcase the paleness:
For reference this was me the other day:
Day 487 – Day 517: Month 17 Topical Steroid Withdrawal
(July 1 – July 31 2015)
Hi guys! Sorry, it’s been a while. My life has gotten busier and busier as my skin has gotten better and better. I still flare, but I get over the flares fairly quickly. This month I had a lot of hot red bumps. They would just appear out of nowhere or something would set me off. However, this month I wore tank tops! Please keep in mind that I don’t take a lot of pics on the good days. Most of the pics I take are to document the bad skin.
487
 |
| These bumps appeared out of nowhere and felt kind of hot. |
 |
| The wrinkles are part of the healing. |
 |
| Grocery store lights are the worst when I’m flaring. |
489
 |
| Wearing a little makeup. Skin was very calm. Still have wrinkles that I think will go away. |
490
491
 |
| First time in shorts and a tank top in a LONG time. |
492
 |
| Flaring |
493
 |
| About as bad as my neck got this month. |
497
 |
| Wrists have improved so much since the cetaphil |
509
 |
| With makeup I looked Like this a lot. FINALLY got my hair cut! |
511
 |
513
 |
| LOVE my icepacks after the shower… |
514
516
