I don't think I have had a month as bipolar as this one! Now having come out the business end of March and month number 5, I can now happily report that after a horrendous start, I am seeing some positive change. Albeit, the slowest change to take place in the history of ever! Maybe the easiest way to describe my March is to take everything I said in February, then reverse it.
The first week was only a continuation and worsening of my February's cupcake faux pas and probably the absolute worst I have felt and looked ever (as you will see in my photos). I felt like I was stuck in a recovery quicksand with each day just repeating the last. But after the first week and a huge increase and expansion of supplements, my health in most areas are showing some great signs of improvement and my overall feeling of vitality and health are slowly returning.
I think I'm seasoned enough now to know this is not yet cause for celebration. I realise this is just the relaxation of 'this' flare until the next one hits. My skin might improve further or it might stay in the state of what I like to refer to as 'not quite an oil painting'. It could last days, weeks or months before I almost absolutely have my next flare. So I'll keep the good champagne glasses stowed and dusty and just be happy that today I feel good.. nothing more. How's that for some cold hard logic!
I cant believe I actually thought I would be recovered from topical steroid withdrawal in 6 months. Realistically I should have aimed for 1-3 years. From all the blogs and testimonials I read it seems that everyone who has used steroids for as long as I have, or less, takes about that amount of time before they see noticeable healing. Don't get me wrong, I am fighting for this recovery, tooth and claw. I have followed every single helpful tip I could find, every dietary guide, every relaxation technique and so far I am doing everything by the book. Well, sans the cupcake thing!
It's funny how perspective can change everything. At the start of December I was too self conscious to show my hands in public, which weren't half as bad as they are now, so I would wear long sleeves to cover them. Now I would KILL for the skin I had back then! Having said that, I wouldn't want to change this either. This might be the most important and positively life changing thing to ever happen to me.
I spent some time with my naturopath going over my diet and re-evaluating the supplements I'm on. With my body in its current state, it's struggling to absorb the nutrients it needs so I needed to really increase 'the good stuff' and jam pack this vessel to the hilt! Also, with my mostly vegan diet I was lacking in my essential B vitamin group which is ultra important to my adrenal gland fatigue. Now I seem to spend most of my day in the kitchen juicing, blending and takin' ma tablets! Its not until you gather them all in one place for a family photo that you think yourself 'jesus H christ is all that really necessary?!
Since adding the below supplements to my daily regime (started about a week into March), it's hard to describe, but there is a feeling I get inside when I am at my worst which I can only describe as a deep irritation, an anxiety that causes a bone deep itch which makes me jittery, very irritated, on edge and upset, 24/7. So this sweet sweet respite makes me feel almost like a human again!
Supplements added in March:
- NAC 600mg to boost glutathione production and immune system (twice daily)
- TMG http://www.drlwilson.com/ARTICLES/TRIMTHYLGLYCINE.htm (2ml daily)
- Magnesium (morning) multi including B vitamins/folic acid, glutamine, chromium etc. (once daily)
- Magnesium (night) multi including calcium and vitamin D3 – no B vitamins (once daily)
- B12 (twice daily)
- Women's multi (once daily)
- Zinc (once daily)
- Broncafect for my asthma http://www.mediherb.com/product_pdf/BroncafectLR.pdf (three times daily)
- Fulvic minerals (once daily)
- Valerian complex for sleep (as many as I need at night). I want to add here the brand of Valerian I use is Mediherb and is nothing short of 'da bomb'.
Additional to this, I have upped my vit C to 3000mg daily.
The other supplements I was previously taking and continue to take:
- Flaxseed oil, hempseed oil, tumeric powder, maca powder, blueberry concentrate, supergreen powder and acidophillis - (added to my breakfast smoothies)
- Coconut oil (on lunch salad)
- Neem caps
- Gumi Gumi caps
- MSM caps
- Livton – for the liver
- Paw paw leaf caps
I don't intend to take this stuff for the rest of my life, not so much for the inconvenience but for the money I'm spending on all if it. For someone who isnt working, I'm definitely feeling the sting! Some may stay on, but the majority of these are to help me recover as quickly as possible so I figure, invest now for faster healing!
In other news, imagine the heartbreak I felt when I discovered raw cacao (chocolate) is bad for adrenal recovery. I already knew that any stimulant is going to adversely effect my adrenal glands which is why I have given up alcohol and my other favourite poison, coffee. I had no idea cacao was in the same category. Only days before I discovered this I had made the most amazing home made dairy free chocolate peanut butter cups known to man. Alas, this too shall be sacrificed for my health.. FOR NOW! Until then I am going to attempt a carob substitute and hope its half as good as my old bestie, cacao. Carob is the safer alternative as it doesn't contain the stimulant and toxic substance theobromine, which is the addictive and adrenal hormone depleting aspect to cocoa (chocolate). For those of you who see cocoa as a health food.. it ain't a health food when it's offset by harmful toxins!
These poor buggers seem to keep getting left behind when the good skin rations are being handed out. The severity has definitely improved since the start of the month and the skin rarely splits now so I can wash my hands again. But the same areas are still covered and look pretty bad so perhaps this will be one of the last places to clear up. As long as my face clears up before then, the eczema on my hands don't bother me none.
I haven't mentioned this before, but since going through topical steroid withdrawal I have cut back my luxuriously hard and long nails to the stumpy nubs I now have. Only on account of trying to save myself from gouging out more skin than I had to. And in the last few months the eczema has started to creep under some nails which is slowly lifting them off. I really hope they cant lift a whole nail off!
Also something else to note re the nail subject. We know that nail growth reflects our state of health and so I thought it might be of interest (albeit, has no real importance on this blog) to mention that my nail growth over the last 2-3 months has changed. More prominent ridges and roughness are showing and on some nails it is so bad that it looks like waves coming out from the nail bed.
The reason you see more of my left hand is because its easier to hold the heavy camera with my right hand! And one thing I notice now looking at these photos is that the thickness to the tops of my hands has subsided dramatically. Even though they are still wrinkly, they don't look as much like elephant skin as they used to.
At the start of the month they were pretty bad, all blotchy, patchy and itchy with eczema. Then they became more like the arms of one of those people who obsessively burns themselves with cigarettes. Now they're slowly clearing up again and the dry patchy spots are slowly disappearing. Good days and bad days really. They still get itchy from time to time and become bright red, but it settles quickly and now I am not embarrassed to wear singlets again which is good because its a sticky summer here and these guns need that fresh mountain air!
Unfortunately I didn't take any photos of how my arms look at the end of the month. I will have more for April!
The itchiness on my legs is subsiding. There was a period where I tried to practice mindfulness as often as I could, mostly during sleeping hours, where I would try to remain aware, observant, neutral. The moment I noticed myself going to scratch, I would just pull back and put my hands at my sides. This went on for many nights but after a while it managed to let the skin heal further and the itchiness wasn't as severe. The skin began to slowly improve and even though I still find myself unconsciously scratching, they are still improving. They still look terribly patchy with loads of scratches and scabs, but the skin underneath feels really strong and I can see the oil production coming back. Am I kickin' some f%$#@!& goals this month or what!!
My feet still look like they have a mange/scabies hybrid, but I can see slight improvement. The itchiness has backed off a lot and like the rest of my body, the skin underneath seems stronger and better. I'm looking forward to winter so I can cover these hocks with socks.
Just a note about the mindfulness thing. Mid flare there are no such things as mindfulness or 'sleeping hours' so I can only find that zen when I'm coming out of the nightmare.
Looking at these photos it might be hard to tell any improvement at the end of the month, but there certainly is even if the photos don't show it.
I always seem to have one droopy eyelid. Why is that!
I looked back at some photos of myself from the start of the month and I almost want to cry. Seeing my face falling apart and aged so much is vexing and incredibly upsetting. As sanguine as I tried to remain at the time, my limits were constantly tested and looking back I think I did exceptionally well to hold it together.
As I mentioned earlier, I was at my worst at the start of this month. Itching, peeling, cracks at the corners of my mouth and wrinkles as deep as canyons. My fears that my skin might stay haggard were soon put to rest after my first shower in months (and a lot of time for my skin to do some healing), I was able to roll off a whole top layer of loose dead skin flakes and I stepped out of that shower looking more like the old me again. Faith restored! Well, mostly. I still have some weird stuff going on with my eyelids sagging but hopefully that will work itself out. Oh the cracks at the corners of my mouth have fully healed too!
Even though my body is slowly coming out of this flare and my face is showing some improvement, it is still horrendous and crazy flaky! I think because I stopped using steroids on it about 2.5 months after the rest of my body, it will still be some time before it stops shedding so much and begins to repair. I am happy I don't look as bad as I did at the start of the month, but I am still far from looking good. The dryness and tightness over my lips is pulling them so thin and tight and I still look like I've aged about 20 years :(
So here are my shocker photos showing what a month I've had!
Much like my face, my scalp is still writing cheques that my hair cant cash. The constant shedding is over shadowed by the fact that I cant easily get the skin off the scalp and so it causes so much irritation which would almost be ok if it didn't add to the hair loss. Unfortunately I cant report happy news in this department yet. Maybe the shedding on my head is verrrry slightly subsiding, but the hair loss is still going strong. I have lost over half of my hair now which may not look obvious to the layman when it's down, but I can see the sparsity at the roots and grabbing it all to make a pony tail now feels like I'm grabbing a thin rope. I think I am seeing a little bit of new growth at the front, but who knows. Here's an example of the loss.. I have one of those bathroom bins that stand about maybe 40cm off the ground. I replaced the bag about 2 weeks ago and in that two weeks, I have literally FILLED it with my hair. I'm talking, dense clumps of hair taken from my hair brush every day. You want to know what sadness feels like? Fill a bag with your hair!
I mentioned the sleep I'm now getting every night. It's still a very broken sleep and its not always the 8 hours I would hope for, but it is still something! Never again will I take a decent night slumber for granted! The sleep improvement was on account of those awesome valerian tablets I started taking and will continue to take until I manage to sleep on my own. How amazing to start feeling a bit more normal again. Honestly, the lack of sleep was making me feel like I was dying on the inside.. I don't know what other way to put it. It was hell! Here's hoping my sleep continues to improve.
Hey, want to get slapped in the face with more good news?? My flaking is finally starting to improve! Again, good days and bad days, but at least they are not all bad days any more. The main areas still heavily shedding now are my neck, face and scalp which are just the small areas really and a little bit from my legs and feet. The rest of my body has reduced the flaky areas and what remains is only slightly shedding but still showing visible improvements in hydration and strength. That being said, I still wake up in a bed full of skin, still have to vacuum around my bed every morning and still have to shake out/wash my bedding daily BUT there is noticeably less skin in all these areas.
February was probably the worst my asthma has been in many years and I cant say I wasn't concerned about it. Now I've gone from 2-3 ventolins a day down to 1. Some days I even went without because I plum didn't need it! Then I did something really silly... I sprayed around my bed with the most toxic ant spray on the market! The ants just kept coming into my room and onto my bed in the mornings and I was so past trying to keep them at bay I just unloaded with the spray and since then, my asthma has worsened again. Not back to where it was, but most days I usually always feel wheezy and need my ventolin about once.
I know my asthma and lungs need some work and it will probably be a while before we are doing trust falls together, but one thing is for sure, I won't be sabotaging my health again with that toxic stuff!
Sometimes its hard to notice change when its so painfully slow. But now it's time to check in on the oozing state of my body, I cant believe I currently have not one piece of tissue stuck to my skin! Howzat! Not to get too excited, I don't want my bubble too inflated. But this is huge for me. The weeping is so incredibly depressing and foul, words just cant describe. I know I do still get the odd serous exudate drip usually from the back of my leg or the tops of my feet if I've been unconsciously scratching. I can see it on my sheets in the mornings. But it's a fraction of what it was before. God, I would give anything to not have this come back! Be gone ooze!!
I done gone and had myself a shower! Just the one. That was enough. It didn't sting quite as much as the last time I tried it, but it was still pretty painful. It just made washing my hair a hell of a lot easier than hanging my head over the bath for 10 minutes, which can I tell you, does not a happy spine make!
Can I just note here that I DO still wash. I just don't wash in the shower at the moment, that's all. So no stinky jokes!
I've also switched shampoos now to my naturopaths formula which is yielding some good results with itchiness. My old shampoo, although being the most basic 3 ingredient product around, was still causing stinging and irritation so I'm happy now to have found a cleanser that actually helps my skin and the condition of my hair is looking heaps better. Just wish it would stop falling the freak out!
At the end of March, Brett and I spent a whole day outside the house, doing lots of running around and we even had lunch at a fancy restaurant! It was mainly for business, not pleasure, and I thought I would be fine given how well I was recovering but by the end of the day, I was scratching my arms to pieces and feeling very irritated all over. I guess it goes to show that even though I'm starting to heal, this body is still a big open wound and is still so easily affected by environmental irritants. I need to continue taking top care to protect it until I'm in the green again. Lesson learnt.
So far I think I have managed my emotions pretty well. I have been able to see the worst for what it was, then leave it in that compartment. Trying to fight the sadness is counter productive and pretending I am 'happy' is only lying to myself. But giving it a name, allowing myself to experience it then moving on I feel has been the best way for me to handle this. Meditation has definitely helped at least break the thinking cycle. Like everyone else going through topical steroid withdrawal, I doubted whether I would be able to heal but now I am at the end of March, I can say that I now have total faith it will happen. When I was in the worst of the flare I had no frame of reference to show me that recovery was even possible, but now experiencing such elevated health, the next flare will be far less scary!
Being so separated from the world I actually feel slightly socially retarded. Only a month or two ago I loved the idea of being social again. Now, I don't even want to leave the house so I may need some practice before I inject myself back into the matrix again. Guess it doesn't take long before one 'loses touch'. I just need to do it before I become a proper hermit.
To summarise this huge month, yes I have seen some dramatic recovery take place but its not great every day. There have been some days I think, yes, I'm looking and feeling good again. But then I can take 3 steps back over the next few days. Slow and steady certainly does win the topical steroid withdrawal race so I am by no means going to assume I'm in the green yet. My liver is still heavily loaded with toxicity and my adrenal glands are still fatigued. While I am doing the best I possibly can, time along with a clean diet is still the main road to a full recovery and now seeing a little change this month I am more motivated than ever to keep blazing ahead.
- Change and increase of supplements
- Flare slowly improving
- Improved sleep on account of supplements
- Hair loss worsening
- Scalp possibly slightly improving
- Face still shedding, otherwise slowly improving
- Wrinkles and sagging still bad
- Shedding on body improving
- Edema under eyes gone
- Lymph nodes still improving
- Temperature issue gone
- Arms improving
- Hands improving
- Legs and feet improving
- Asthma improving
- Weeping improving
- Styes gone