February 25th is month 4 and I cant say there is 'improvement' as such but there is certainly shifting and change happening.. which I'm gonna go ahead and call 'progress'.. and with all those inverted commas and buzz words I should work in marketing.
What started off as a hopeful and positive looking month ended up looking more like a dogs breakfast. No signs of moving forward, only a relentless ground hog day stuck in a horror movie, you know; insomnia, housework, food, scratch, ooze, cry, bleed, shed, repeat. What happened is my old friend Flare came to visit and its all my fault. I mean, I gave it an open invitation by spending almost 2 weeks shoving cupcakes into my face hole.. But I'll get to that.
I just want to note here that topical steroid withdrawal takes a loooong time. For someone who has used for over 30 years, I haven't found a case that hasn't taken less than a year to see decent improvement. I think I am looking at between 1-3 years for good improvement and longer for complete organ recovery. Having said this, I feel I am in a better position to recover much faster than all the other stories I have read for the following reasons.
- I don't have to work (yet!). This means I don't have the added stresses of working, feeling self conscious every day or having to break my precious morning sleep (which is sometimes the only sleep I can get). Obviously this is a huge advantage.
- I have been committed to a very nutritious, organic diet from the offset, with the exception of the below, as well as a full range of quality supplements to assist in a speedier healing process.
- I am under the care of a wonderful Naturopath who constantly monitors my entire physiology, provides feedback and education on where my body is at and what the next steps are, keeps me on track by bringing my mental and emotional qualms back to a place of logic and peace, and provides consistent treatments that assists my body in healing.
28-2-15 WEEK 18 BODY, WEEK 6 FACE, WEEK 5 MW
I have this habit of sabotaging myself when my health starts feeling good again. Its a recurring motif for me, like when I would get the flu; the moment I started feeling a little better I would jump head first into a cute dress and happy hour drinks. This always saw me back in bed and taking a much longer road to recovery. I mean, I was really at such a great point at the start of February, what with my diet and cravings and such. So now I have learnt yet another important life lesson. Don't lick the spoon!
As I've mentioned previously, I am enjoying my new passion of food 'un-cooking', cooking and baking, so it would behoove me to stick to using only healthy ingredients. However, I made the genius decision that if I couldn't eat naughty food, then I will still get some satisfaction out of making it. Because.. well. Food.
Turns out I'm pretty amazing at the ol' cupcake baking and my new guilty pleasure is being girly and creating bomb-ass icing decorations. So here I am, having a ball baking and decorating these sweet little cupcakes, Martha Stewart style (apron and all!) for my boyfriend (the sweet little cupcake) until one day my defenses were down. The firewall that keeps me in check was compromised and all it took was a little lick of icing off the spoon. Boom. I was off the wagon and selling VCR's for my next hit.
I don't deny that it wasn't a delicious party in my mouth, or that I wished it would last forever, but I knew the day was nigh where I would pay my penance. Here's what happened. Firstly I made some 'safer option' (Ha!) cupcakes for myself with no gluten and very little dairy, but still packed to the hilt with sugar. Then after getting the taste for this debaucherous lifestyle, I moved onto the hard stuff - full dairy, sugar and gluten cupcakes. Then, like a true addict, I moved onto eating the cake icing from a bowl.. with a spatula.. over the sink. That, people, is what rock bottom looks like.
It didn't take long for the flare up to get its hooks in. Now at the end of February, just looking in the mirror is a poignant reminder of my moment, nay, 2 week holiday of weakness.
Since checking into sugar rehab, I am back to concentrating on my usual organic fruit and vegetable based diet, with the exception of the odd handful or two of nuts and occasional meat (mostly grass fed) dish. I have dialed up my fruit intake as I obviously have a massive hard-on for sugar which I need to compensate for. Here's to more delicious smoothies and fruit salads and paving the way with healthy, unrefined sugars!
*Warning. Boring paragraph below*
Have I mentioned I make my own broth? Well, I do and I think that makes me a pretty cool dude. That was until my last batch :-/ In a genius move, when I strained the chicken bone and vegetable mixture, I used cheese cloth to strain instead of a strainer which basically meant I had strained out all the heavenly and close to godliness gelatin. If you don't know already, Gelatin is the main healing component of broth that repairs and maintains a healthy gut, which only comes from the bones and marrow of an animal. Melissa v Life: 0:2. But it took 24 hours to make so I'm still gonna drink it!
Obviously I’m far from being out of the woods with my food cravings. I am human and susceptible to all the same food perversions as everyone else. Good days and bad days, its all going to teach us important lessons in the end. But I see the war going on out there with the proliferation of heavily junk based diets, joyfully inhaled by anyone who looks sideways at a menu. I see glorification of laziness and dietary weakness all around me so is it any wonder people struggle with their health! It takes butt loads of dedication to be able to persevere and stay their ground and so if my latest health a-bomb hasn't driven this lesson home, then hopefully the next one will.
Eczema here has worsened 3 fold. The palms are both almost completely covered as well as up the fingers. The tops of my hands and fingers have become much worse and the skin is constantly, painfully splitting. I'm talking sometimes 10-15 rips in the skin at a time. It goes without saying that I don't even wash my hands any more lest I want to be in searing agony for the next 15 minutes. Now looking at these photos, they don't show half the severity.
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Much fluctuation here. At the beginning of the month they were delightfully relaxed, clear and unchanged. Then with the peak of the flare they became very red and itchy on the undersides and patchy with eczema and scratches on the tops. They have definitely taken 5 steps backwards. Again, the photos don't do it half the justice!
My legs haven't really changed even with the flare. I tend to scratch the backs of my legs unconsciously and even though there is no real eczema there, it still feels very itchy and consequently I have much torn up skin from persistent scratching. The eczema on my feet is still spreading slowly. It's pretty nasty on the eye, but surprisingly isn't as itchy as my scalp or my legs. Do you think that means I don't still scratch them to pieces? Pfff are you kidding!
Most of the weeping comes from my legs and feet. No idea why. But this aspect hasn't improved at all. It’s not uncommon I feel a wet sensation only to discover the orange fluid running down my leg. I always, and I repeat, always, have many pieces of tissue stuck all over my legs and feet to soak up the fluid. It is yet another uncomfortable and upsetting symptom.
My Face.. Ohhh my poor face. If Freddy Kruger and Betty White had a love child, I'm that! As much as I try not to let myself get too caught up in the superficial stuff, its just so hard to see myself in the mirror now looking so foul. Going out in public? Forget about it. Having people over to look at the freak show? Don't even go there! I have been asking my dad to get my groceries for me when I my appearance is particularly heinous which is a huge help. Mucho thanks papa!
Considering I only stopped using steroids on my face 6 weeks ago, its going to heal at a different rate to the rest of my body so I realise I need to back off a bit, and give a brother room.
What makes it so bad, I hear you ask? Only the thick, swollen and droopy eyelids, the edema swelling under my eyes, the red patches of eczema looking rashes, the complete and relentless coverage of white flaking scaly skin, the cracked and peeling lips and the cracks at the corners of my mouth that tear each time I yawn or emote surprise (:-O
Actually, the edema has come down a little, thankfully. Some days it is worse than others but overall it has improved slightly. A small win is still a win yo!
My Betty White comment was not a rash inference. I'm literally turning into a Shar Pei! Ok, that’s melodramatic.. BUT I am definitely developing wrinkles all over my face, neck and chest as well as sagging of my cheeks and jaw line and I know they are on account of the swelling and differentiated skin, but I'm scared they may (worse case scenario) be more permanent. I've seen photos of people who after TSW have had to have surgery to remove the loose skin that resulted from a prolonged stretching of the already delicate skin around their eyes. I only hope that with my clean diet I can push out healthier new cells and more collagen to counteract the degradation. Coz this is my house! Dem wrinkles aint got no place in hur.
It's the frosting on my cake and the wrapping paper of my brain. You think if there was justice in this world then it would have left my head alone, but noOOo. Down tumbles my sexy river of flowing wheat empire!
The eczema on my scalp is obviously worsening and I cant remember a day that it wasn't peeling so much that it didn't take less than 10 minutes to shake all the skin loose from my hair each morning. I scratch in the middle of the night until I am gouging out valleys so its perhaps the itchiest place on my body right now but on top of that, there's the hair loss.
It was hubris for me to have been so attached to my hair in the first place. It just took me so long to grow out! But here I will learn humility through this. Currently, my hairline sits almost an inch back from where it used to be which almost looks like I have shaved it that way. The gaps forming all over my head are becoming more prominent and I have a noticeable bald spot on my right side. I had widdled my hair washes down to once a week but after the flare, I need to wash it more often otherwise it becomes way more irritated, I guess because of the build-up of all that skin. I still have to brush it daily and you wouldn't believe the amount of hair that comes out now. It literally fills my hairbrush and then some. *internally sobs*
As I've read in many peoples experiences, hair loss is very common and can be a cause of the inflammation, or as a result of adrenal fatigue. In my case it is probably both. I'm aware this means I may lose the majority of my hair and I know I am not alone with this, as far as TSW'ers goes. The most common loss Iv read about seems to sit at around 2/3 of overall head hair loss so, lucky its coming up to beanie weather.
Sleep deprivation is a nasty son bitch! February is most definitely the worst month for insomnia yet. Normally I’m pretty needy as far as sleep goes so being reduced from 9 hours a night to a broken, 6, 3 or 0 has been pretty debilitating. Totally sleepless nights are somewhere around 3 nights a week and what’s ridiculous is that sleep is a huge part of healing. Adrenals need proper rest (sleep) to recover. Adrenals cause insomnia. Go home adrenals, you're drunk.
The cumulative effect of the lack of sleep means I feel gradually worse with every week of bad sleep. During the days I will feel as if I’m an empty vessel, completely hollowed out, only just enough capable of getting through the day-to-day mechanically, and almost totally unable to hold a verbal conversation with an actual human. Texting is fine. Talking to my dog is fine. I mean, he’s pretty content with the odd pat and grunt in his general direction anyway so. God how good are dogs!
I have to say, when I am in the middle of a flare, the ONLY good thing to come of it is that the shedding subsides dramatically. Having said that, I still shed enough to make the layman wonder who spilt the flour everywhere. It’s just not the avalanche load I shed every other moment of every other day. I cant imagine a day that I don’t have to wake up, covered in a layer of scales, lying in a prickly nest of skin sand with everything beside my side of the bed (bedside table, books, phone, the top of my cup of water, the floor) absolutely covered with skin flakes. Then having to spend the next hour vacuuming and dusting the whole house, shaking out all of my bedding, washing the sheets and remaking the bed. That doesn't include the shaking out of skin from my hair plus 10 minute skin brushing to remove the mornings thick layer of dead skin cells from my person. I had no idea my body could punch out this amount of skin!
The last time I attempted TSW back in my early 20’s, I went cold turkey on all steroids, inhalers and all. And I found that my asthma disappeared. So you can understand my discombobulation (I've always wanted to use that word!) at this now worsening and scary symptom. Of all the symptoms, this is the one that could actually kill me. I don’t want to alarm anyone, I am still taking my Ventolin and I have no illusions of stopping it any time soon. But the change is definitely worth concern. My breathing is now constantly restricted, tight and wheezy to the point of being so loud that my boyfriend can hear it many feet away. So to give myself some relief I have to take my Ventolin usually 2-3 times a day, which in the medical industry translates to out of control asthma. This apparently poses a hurdle for my TSW as I have read that any steroid, topical, inhaled or otherwise, given to a person who is withdrawing from steroids is going to stifle the recovery process. I've read loads of stories of people whose asthma disappeared when they started their TSW, and now I have read loads of stories of people whose asthma became worse.
There just doesn't seem to be any rule or accurate guides for TSW. I just hope the strength of my lungs will improve soon because there’s nothing worse than not being able to breath properly.
Now, time for some good news. Whaaa! Good news!? Yeh, its about time I gots me some good goddam news! Those lymph nodes that were so huge I was about to start calling them ‘neck testicles’, they are coming down yo! For the most part, the big ones are still minimally there, but they have shrunk a LOT. Which translates to what exactly? I don’t know for sure but I assume it has to do with reduction of inflammation/immune response which I’m certain is a good thing.
In other good news (what the sh*t, there’s more!?), that weird temperature issue I had in December/January which made me feel constantly cold has pretty much gone. I only occasionally get a sort of cold sweat on, but overall I’m back to being my normal, summer-sweat-beast self :-D This was a result of my adrenals or thyroid so the fact this has improved has to mean my organs are healing. Woot woot!
Ear wax. The topic is ear wax. You've been warned.
So I have noticed in the last month that my ears have stepped up production of ear butter which requires almost daily cleaning. I can actually 'feel' how gluggy and wet they are, mostly in the mornings, even without probing them with my trusty cotton tips. Yeah I know, I know. I shouldn't be using cotton tips because they can damage the ears, bla bla bla. But I don't even need to force the tips all the way down to find the hoards of gooey treasure awaiting! Its like there is a slow river of waxy goodness constantly flowing outwards and I get first dibs at gold prospecting! Heaven!
Just when you thought s**t couldn't get weirder, I think I am now allergic to 'myself'. I am becoming heavily congested during the middle of the nights and in the mornings and the only explanation I can come up with is that there is so much fine skin particles in the air from my night time scratching, that I am having an immune response to it. Allergic. To. Myself.. *face palm*
I have decided to stop washing my hair every day. My scalp stings so badly with the shampoo and showering in general leaves me with an inconvenient half hour of searing pain each time which I obviously can do without. Much like MW, I just stopped cold turkey. I decided to wash it once a week and see how it went and within a few weeks, low and behold, my hair wasn't oily and gross any more! In fact, the only reason I wash it now is because I still have eczema on my scalp and the skin build up becomes very irritating and needs to be scrubbed off and washed out. I think that once I am rid of this skin issue, my hair will be washed even less often.. which is closer to what humans should be doing anyway.
This little ditty sums it up perfectly:
“What shampoos do is strip your hair of it's natural oils, called sebum, in order to give you that squeaky clean, fresh, bouncy volume look and feel. It feels great after washing it and looks gorgeous the day after. But the oiliness eventually comes back super soon and you assume this is natural right? Wrong. Your hair and oil glands know that they are being stripped bare and so it adapts by sending signals to the body to produce MORE oils to compensate for the chemical stripping done by shampoo. So basically, it's the opposite of moisturiser, it overproduces oils to counteract your regular stripping and you in turn think that your hair is dirty and oily again so you do the one thing that made it like that in the first place: shampoo again. And so begins the cycle where you think you have to shampoo your hair very frequently to keep the oils at bay and just chalk it up to having oiler hair than everyone else, damn genetics. The more you use, the more your body compensates by producing more oils. These natural oils are needed to keep your scalp hydrated and fight off bacteria and dandruff. Shampoo leaves your scalp oil-less so it's dry and prone to dandruff- that's why you have to use conditioner to restore some kind of moisture.”
I think generally speaking, this is a pretty solitary road and psychologically taxing. I have been lucky enough to have the people in my life that I do and to be in the position to avoid the stress of working. For these things I am so completely grateful.
When I am at my worst, I definitely think about giving up daily, even hourly. I curse myself and the medical industry for ruining my health. But I still contemplate how much easier life would be if I just gave up and went back to using steroids. I could go back to being who I used to be, living the fun, junk food and alcohol lifestyle that I enjoyed so much. I know how much this lifestyle affected my health but I wont lie, it was also a lot of fun! Now, I have taken stock of my life and I realise this path will only lead to a world of ongoing and worsening health. I realise I need to sack up, have some maturity and foresight and take control of what I want my future to look like and reminding myself of this when I am in my darkest place, this is what keeps me on track. It is the hardest road to take but with greatness comes sacrifice.. and I intend on having a great future.
- Major flare mid February
- Insomnia worsening
- Worsening of hair loss
- Scalp worse
- Face worsening
- Edema under eyes improved
- Lymph nodes improved
- Temperature issue improved
- Arms worsened
- Hands worsened
- Legs unchanged
- Asthma worsened
- Styes returned then disappeared