Forty Days and The Fast-Forward Button

Forty days, no steroids!  It seems like just the other day that I wrote the post for the 30 day mark, so that’s encouraging that time seems to be passing by adequately.

However, have you ever wanted to have a Fast-Forward button in Life?  It’s so convenient how we can forward through things while watching a movie, and now we can even forward through commercials in TV.  When are they going to invent the Fast-Forward button for our general existence?  I can think of many instances in the past where I wanted to fast-forward through things.  Sitting in a never-ending boring school lecture.  During mile 20 of the marathon I ran, where I was convinced my knees were going to fall out and I still had to make it 6.2 miles to the finish.  Fast-forwarding through the gloom and dark and cold of winter.  And now I would like nothing better than to fast-forward however many months it’s going to take until my skin is HEALED.

But, I know why we can’t fast-forward through things (other than the reason that it’s damn near implausible).  IT BUILDS CHARACTER!  How would we ever truly appreciate the great and blissful things of life without experiencing the things that are not so great.

Here are some thoughts over the past week:

DAY 35.  I had a moment where I foresaw I could get my old swagger back, where I could wear something like tight pants and high heels and men would look at me for the right reasons.  My face seems to have a “skin curfew” where around 7 or 8 pm I start getting wildly itchy, no matter what.  This is mentioned on the ITSAN site and seems to be due to a drop in cortisol levels.  Now I know to be home around that time or I go insane trying not to scratch.  Groin is very raw and itchy, even though I never used steroids there.  Picture someone with a tattoo of angel wings coming up from their groin up onto the hipbones – that’s the exact same pattern of my rash there, it’s symmetrical and there is a border of ‘normal’ skin in the center.  I think the reason for this, plus my very red neck, is because so many lymph nodes are concentrated there.  I got kind of an itch attack in the afternoon at work after eating a few pieces of candy – maybe I was sensitive to sugar or the dyes.  Often now though I say ‘screw it’ when it comes to what I eat, I’ve been obsessing over food for nearly the past 2 years trying to find a link between what I eat and my eczema.  I am still avoiding dairy and nuts, but I don’t care about food anymore, I’m always hungry and always drinking water, this is literally recovering from an illness so I need to eat a lot so I can heal…. it doesn’t mean that I’m eating junk, though.   I did have a big cup of K-cup coffee today – I felt like I had to because TSW is robbing me of sleep – I still want to avoid flavored coffee because I’m suspicious of the propylene glycol, but any effect that the coffee is having on my skin is either null or masked by this constant flare.  Noticed tiny weird bumps on my palm and fingers – if I poke them, they ooze clear fluid, but they are not like blisters.

DAY 38.  Today I really felt like I was making a tiny bit of progress.  My eyelids did not feel so dry and tight today, and my neck felt fine, itch-wise.  I was proud of myself because I felt very itchy in the afternoon before I went to walk on the treadmill, but I resisted and then I was able to distract myself!  Then…. my damn ATM card got eaten by the machine, so I was on the phone with customer service for 20 minutes on hold and then trying to resolve this, and the chicken I had been looking forward to for dinner was extremely salty and rather gross.  So the stress of all that made me really rip at my neck – now it feels oozy and not so good.  My legs are still itchy but may be clearing up just a little.  I have a little raw patch on one leg, and then my jeans stuck to it and fuzz got in the wound, ugh.

DAY 39.  I hate how this topical steroid withdrawal seems to screw with my sleep patterns.  I accidentally fell asleep in bed before I took my bath, and then my eye was really puffy.  So then I took my bath around 2:30 AM, and I just laid in bed for hours in the dark and could not get to sleep… maybe I finally zonked out around 5 am.  It’s terrible during the weekdays because I don’t get to sleep until near midnight, and I have to then wake up around 5.  This morning I look like a tomato.  Yes folks, you can find me in the produce aisle.  I go well with my friends Bacon and Lettuce and make a delicious sandwich.  Almost my entire face and neck is red, it’s really very alarming.  The only regular colored patches are small areas around my nose/cheeks, and then my nose itself.  I also noticed today I have a swollen lymph node in my armpit.

DAY 40, today.  My neck rash is spreading downwards, but today I was not so red.  This picture is in dim light, so it’s redder than it looks.  DSC00703

If you take a look at Rochelle’s blog, her neck rash looks a lot like mine.  Another blogger (I think it was Louise) commented that our TSW patterns are a lot alike, based on the pictures.

I wonder if this means that my neck rash will continue to spread downwards over my chest and shoulders, like hers.  At least I can hide those areas with clothing.

 

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16 thoughts on “Forty Days and The Fast-Forward Button

  1. I’m glad to read that you’re staying positive throughout all this. I try to keep positive but it’s just so f*^&^ing difficult, which is why I haven’t written in my blog as much as I’d like. I feel like there’s so much sadness, anxiety, frustration already surrounding TSW that I want to be the one who’s uplifting but it’s been near impossible. One thing’s for sure: I will cherish my healthy skin when I’m healed like no one else!

    About sleeping routines… my sleeping patterns have been out of this world. I sleep during the day, sometimes at night, sometimes both. I’m not currently working so I just sleep whenever my body will allow me. I’m thinking about getting an acupuncture mat to help me relax. I’ve read some excellent reviews on them and am wondering if it’s something that could help… Hmm!

    • Yes, I completely get what you mean about it being SO hard to stay positive. I feel like if I don’t though, I’ll drive myself crazy. I have to convince myself that I’m doing okay, to notice little tiny signs of improvement or appreciate the good things I have, to constantly remind myself there WILL be a light at the end of the tunnel. The most helpful thing has been to know that I”m not alone out there, the ITSAN forum has been great (www.itsan.org), I highly recommend joining it. You couldn’t be more right about cherishing healthy skin….I feel like I will never take it for granted again.

      That’s lucky that you’re not working so you can sleep whenever! Keep me posted on the acupuncture and let me know if it works for you. Another blogger out there (sorry I can’t remember the name of her blog at the moment but it is on wordpress) has a TSW blog and mentions using acupuncture.

  2. Amanda says:

    Wow, I can’t believe it’s been 40 days already. That’s interesting that it messes with your sleep patterns, and that your skin has a “curfew.” I’m glad you’re still keeping a positive attitude!

  3. Ugh… You’re in my thoughts, girl… *HUG* You are staying extremely positive, so props to you for that. You’ll get that old swagger back… you’re getting further in the journey every single day.

    • Thank you so much girl! It’s like the saying “The journey of 1,000 miles begins with a single step”. Even though I have far to go, I have COME a long way and for that I am thankful!

  4. Louise says:

    Hi Hun, have you been over on the itsan forum lately? There is a guy on there called DK who has just posted some AMAZING before and after pictures of his steroid withdrawal process. He looks great now and you will too.

    The sleep thing is a pain, but it sorts itself out after a few months. It is just the adrenals adjusting to the lack of external steroids.

    Hugs. X

    • Hi Louise, YES – I just saw the pics of DK this morning. Absolutely incredible! He is so handsome now and his skin looks perfect. It’s hard to believe he was ever as bad as those ‘before’ pics. Seeing those is the perfect encouragement that I needed for this journey!

  5. Courtney says:

    Wow 40 days! Congrats!! And I think your neck looks really good- definitely doesn’t look as angry as before!! Keep at it, I know it will be worth it.

    Question: In your studies of TSW, is that something that only certain people get who have been on topical steroids, or will everyone eventually get it if they are on them for too long? Kinda nervous over here hahah.

    • Amanda says:

      I always worry about this too, Courtney!

    • Thank you! I know it could flare again at any point, but it IS feeling and looking better!

      That’s an excellent question. I was just reading this morning (and I forget where, but it might have been on the ITSAN forum (www.itsan.org)) that 3 out of 4 people that were prescribed topical steroids will eventually show signs of addiction. They say it also depends on the duration that you used them for and the strength. I myself only used mild to moderate strength and only every so often – some people on there used STRONG ones all over their body (or got steroid injections), and for 40+ years!

      I don’t think I ever would have known about TSW were it not for a kind blogger that pointed out I probably have this (I think this was after I posted the pic with my stomach rash and she said it didn’t look like typical eczema). A lot of the symptoms I didn’t have at the time, but what I did have was slowly spreading eczema without any rhyme or reason or cause that I could pin down and a history of sporadic topical steroid use. I also think that the mono I had and maybe taking birth control also, provoked a suppression of my system so it was more sensitive to the effects of the steroids – otherwise maybe it would have taken me a few more years to encounter TSW.

      After seeing so many graphic TSW pictures and reading blogs and other people’s accounts though, I am pretty anti-steroid. I know the two of you have used them in the past or currently use them hence the nervousness! Another blogger mentioned that if your skin still responds well to the steroids, you are probably not addicted. For me, when I think back, I remember that Desonide and Protopic weren’t working anymore on my body, and even though I would heal when using Mometasone (medium-strength steroid), things would always come back worse in about a week. It could definitely be worth it, at a quiet point in your life (like not right now for you, Courtney, since you’re about to get married!!!!), to stop all steroids and see what happens.

  6. Wow, I just stumbled across your blog today and have to post to say well done on reaching 40 days! I don’t have eczema but my husband and 3 year old do. I’d not heard of TSW but my other half suffers thinning of the skin after years of topical steroid use. He bruises extremely easily and often has dark bloody bruises just under the surface of his skin on his arms. He feels like he is a lost cause in terms of finding an permanent alternative to steroid ointments but we’re trying to ditch them for our daughter’s eczema. Your blog must be so inspiring for other sufferers. Go girl!!!

    • Thank you GoingNaturalMum! Appreciate your warm words and you stopping by! Your poor husband, I know what it’s like to feel futile and I’m looking at your blog now reading about you trying to heal your daughter. Kudos to you for being such a diligent mom with trying to beat the eczema war. Not sure if you have ever seen Jennifer’s blog on ItchyLittleWorld.wordpress.com but she also writes about her journey with being a mom to a child with eczema. I’m not a parent but her insights are always very helpful for eczema/dermatitis/allergies in general! I absolutely think you are doing the right thing with trying to heal your daughter naturally! The human body is wonderful in its ability to heal itself if conditions are right – hoping that will be proven for both me and for your daughter and husband! 😀

  7. Molly says:

    Just found your blog through a comment on Amanda’s and wanted to say YES, I have the exact same desire for a fast-forward button on life and I’m so glad you put it into words. I dragged my feet for years on getting proper medical advice, but now that I finally know I have celiac disease I just want to skip over all this pesky “healing” time and be acclimated to the gluten-free diet and feeling well and etc., etc.

    Hope that all is going okay for you the past couple days, and looking forward to reading more of your posts.

    • Hi Molly! Thanks for visiting my blog! I’m glad to hear that you finally got diagnosis and now know what you have to do to be healthy! I don’t have celiac but I just checked out your blog and your perspective on things is really refreshing (so I followed 🙂 ) No matter what condition one has, I think the most frustrating thing is just NOT KNOWING and chasing endless things to try and make it better. I’m sure you had your share of that before you knew it was celiac and I’ve been chasing this bugger of eczema for quite a while – but now I’m somewhat relieved to finally know what it is and what I have to do (basically WAIT and not be able to push any fast-forward button… lol!) I have a quote on my mirror at home that says, “Judge each day not by the harvest you reap, but by the seeds that you plant”. Even though we can’t fast forward, we can take confidence in the fact that every day we are making good decisions to manage our respective conditions and work toward a completely healthy future!

      • Molly says:

        Thanks for the follow! And yes, I totally agree that the worst is not knowing, and not being able to take any steps to fix the problem because you don’t know what the problem is! I really appreciate your perspective, too (thus MY follow despite not having eczema!).

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