April isn't as much of a spectacular month as March turned out to be. Easter went by unnoticed. I didn't get April-fooled and my body continued its very slow healing. The mirror is still my foe so until the day my face isn't peeling off, I will remain in this deflated melancholy.
Its hard waking up after a good nights sleep, feeling energetic and renewed until you see yourself in the mirror. “FACK!”. You thought you could spend the day outside in public?! Wrong again!
Credit where credits due, my adrenals and liver have come to the party. My naturopath confirmed what I believed was happening, which is 'huge' improvement in these areas that present flow on effects of improved sleep, hair returning, returned libido and general energy and vitality. Obviously all extremely positive things worth celebrating. Its just my impatience with looking like a bridge troll that is getting the better of me. If my ego weren't in the way then I'd be throwing punches in the air for my speedy healing. Unfortunately, I own mirrors.
I understand that change happens inside first, with the skin as the last organ to show improvement. There has been some amazing change internally but I just wish I looked as good as I feel! Guess there is still a long way to go on the topical steroid withdrawal journey.
Anyway, prepare to have words like 'mundane', 'dull' or 'I feel like watching funny cat videos' come to mind whilst reading through this months blog.
I pledge my allegiance to the guardian and liberators of my health. King Food and Queen Supplements. (Can you tell I've bee watching Game of Thrones)
I have maintained a pretty consistent regime of supplements and food. Still fruit and veg with the occasional meat. The only real changes this month are that I removed the MSM caps because I wasn't sure if I still actually needed it and I dropped the Broncafect because it didn't help my asthma at all.
I also decided that I wanted to up my meat consumption so bought some beautiful grass fed, organic beef eye fillets to last me a few weeks and I found there was no real difference to my health by doing it as long as I incorporated it with a butt load of fresh 'alive' food. If I just had a meal with meat only I found I would get a lot of gut and digestion issues which in turn made my skin flare up, so now I am a little bit wiser! Reason being that meat acidifies the digestive system which exacerbates skin conditions which I obviously want to avoid.
This month included a couple of mini-flares which were brought on by stress and one extremely acidic meal. Could this be why my skin isn't looking as improved as it otherwise may have? This is why my photos are lack luster compared to last months but you will see days where I am looking pretty good for only 6 months into recovery from 30+ years of topical steroid addiction .
My arms are one of the first places to explode when I have any sort of reactions or mini flares now. Because of this I have had many spots which have raised up then flaked off leaving small white dry spots all over. They eventually fade away until the next flare.
My legs have improved heaps! The condition of the skin is much better and there is strength and oil returning. It has been difficult, but at this point if I apply some mindfulness with my scratching I am able to let more skin heal which is showing on my legs a great deal. I still pick and scratch sometimes but not nearly as much so now I have much less scabs and spots on my legs. My feet are a lot more relaxed too, although still pretty bad. I think the photos here make it look worse than what it is.. or.. perhaps it looks better only through the looking glass of my eyes... Deep.
If The Thing from Fantastic 4 spilt the loose crust of a meat pie onto his face whilst being dehydrated from drinking sea water, then he would look close to how my face looks. I am pushing the flake factor into the red and in the famous words of one of my favourite historical philosophers, Willy Wonka, “They`re certainly not showing, any signs that they are slowing”..
With all my improvements, my face is still digging its heals in, as predicted, due to my late withdrawal of steroids from my face and scalp. There is always a reason for our choices and I have no regret as I was only able to completely stop at the time I did, but I guess there was that little optimistic voice inside me telling me that just maybe my face will catch up to the rest of my body quickly. Life never stops trying to teach me the lesson of expectation and the suffering it leads to.
If I spend some time in the shower sloughing most of the excess skin off, even if it looks relatively smooth afterwards, the underlying skin is still very thick, dry and hard, like its waiting out a few days before it can throw off another layer. My face is a super-production line of cells being constantly spewed out at mach speeds and no sir, I don't like it.
There were periods where my face would randomly ooze, then there were periods of more reactive and red eczema, then there were periods of almost presentable clearness (after a good scrub). Regardless of all these variations, it is always itchy and covered in a crusty layer. As I don't want to cause scaring on my face I tend to control myself from scratching here, more so than the rest of my body. So whatever improvement my face makes each day, it seems to be replaced by other nefarious symptoms. Sorry April, no dice!
As mentioned above, it is still shedding like a topical steroid withdrawal confetti machine. My head is crying me a river of skin plus my hair loss is still lingering. It appears that there is less hair falling out now but the hair loss is only relative to the amount of hair I have left so, less hair to lose, less hair to fall out and so the percentage still being lost is probably relatively the same as before. Ho hum. At least I have some brand new shoots of hair appearing at the front, though this is only a minor consolation to seeing the bald crest of my head through many inches of what should be thick hair. These areas do not yet have hair returning. This is obviously very sad to me still and I hope my new hair grows fast so it covers the large areas lost. What was once my pièce de résistance is now now a desolate waste land of spent party streamers and cake crumbs after a 6 year olds birthday party.
I'm a grown ass woman havin' me some grown ass sleeps! There is nothing sweeter than a decent nights sleep and in the future I will ever take this for granted. I can now go most nights without anything to help me sleep and even though I still wake up several times during the night, I will usually nod off pretty quickly. Back to 8 hours per night and having dreams again is awesome! Last night I was fighting zombies.. again.
When I recently told my naturopath that I was sleeping without any help she was surprised at how quickly I have improved. This was then explained by my adrenal improvement evaluation. It does wonders to ones confidence at staying the game when your practitioner is genuinely surprised at your recovery. *Self high five!*
Holy shed! *sniggers*
Considering now the main body parts giving me the flaky middle finger is really just my face and scalp, I am now able to reduce the amount of time consuming cleaning to a fraction of what it was. I used to have to shake out all bedding then wash and/or hang out in the sun, then vacuum and dust every flat surface in the house – several times daily. Now I can get away with a quick once over of the vacuum around the bedroom and bathroom areas, then give my bed sheets a light vacuum and I'm done. The ants are also less interested in using my bedroom as a feeding ground, even though once I did wake to up a few of them under my clothes and on my face. I think it was their last ditch effort at trying to get their hooks into one last fix. Pffft.. addicts right!
I still need to spend a decent amount of time on de-flaking my face and hair every day, but I feel this will soon be a thing of the past, assuming my recovery continues at this pace.
The one reason I can come up why my asthma is getting worse is that its coming into winter. My favourite season! I've gone from one ventolin a day to 2-3 per day again and I almost always feel restricted breathing. Why do all my favourite things want to kill me? Seriously! Winter? Not if you want to breath! Animals? Fancy body hives and an asthma attack? Chocolate, cheese and pina coladas? You cool with organ issues for the rest of your life!?
I'm fearful the ventolin will prolong my TSW but until I can get my asthma under control, there's no way around this. I have tried herbal formulas, himalayan salt pipe and now I am looking into breathing techniques. When it rains, it pours and this couldn't be more true with my health issues.
Only the odd day after a good pick at the skin on my feet will I need to bust out the trusty absorbent qualities of my tissues. The few times my face has randomly oozed I will just leave without using tissue as I don't care to be a lady about town with half a roll of toilet paper stuck to her forehead. It would be unbecoming.
Have I mentioned I get muscle twitching? It happens all over my body, day and night and is benign as far as I can tell. However I have had a particular spasm going the last 3 months which is driving me insane but given its proximity to my eye, cant be treated with botox. I don't know how to make it stop. I have been using two different types of magnesium per day and nothing. I am now trying a new brand of magnesium so will see if that helps at all. There is nothing more annoying than feeling like someone is poking you all over your body, every day. My naturopath said it is related to steroid use and because I am still taking mild steroids (in the form of ventolin) then this issue just wont go away.
Something I haven't yet shared due to the private nature, was that my libido was severely affected due to the issues surrounding my endocrine (hormone) system. My shop was closed for business, so to speak, for many months and I was also fearful this may not return to its former crowning glory. But now that my system is improving, my hormones are improving and and things are on the up. Mama's back in bidness yo!
I have been congested for the last few months which has all the symptoms of a common cold. I am coughing up phlegm most mornings and have to blow my nose throughout the day. Its not a real inconvenience, but thought it was worth mentioning. Is my body trying to purge in every way it knows how or am I really just a big snot factory?
The very rough ridges on my nails which have been present since I started topical steroid withdrawal are now showing smoothness to the new growth. Just another indication of my ever improving health and general awesomeness.
During the worst months of topical steroid withdrawal, I tried so hard to be strong which includes how I expressed myself to people around me. When I said I was feeling like crap, I was really feeling like I was dipped in a vat of acid and all my skin was being peeled from my body. When I said I felt like a zombie, I really felt like I had a frontal labotomy with no emotion inside me except the feeling of anxiety. When I said that I am living in a hell, I felt like death would be a far easier option. Dealing with the emotions of my support network was as important as dealing with my own, knowing that even well intentioned opinions can be damaging. This was exemplified early on when I had expressed my feelings and physical pain, sometimes I would be met with peoples advice to quit, or that this wont work. Well intentioned damage, which needed diffusion by well intentioned words.
Seeing other peoples blogs and images of their topical steroid withdrawal journeys resonates so deeply with me right now that I almost cant look at them. The trauma of TSW is enough that I understand why people leave the forums when they are done. To relive some of the worst cases would bring up emotions that are better left in the past. Although my topical steroid withdrawal has been the hardest and most horrific thing I have ever done, there are people who seem to be suffering in ways that I cant even appreciate. Some of the images are so gory and look way more painful than what I experienced so I am grateful that I never had to endure this level of TSW. Very very grateful.
I am not much into poetry, but I recently stumbled upon this piece which I found extremely beautiful. So to end my April blog I will leave you with something I am proud to associate with human evolution. Art.
The sun is warm, the sky is clear,
The waves are dancing fast and bright,
Blue isles and snowy mountains wear
The purple noon's transparent might,
The breath of the moist earth is light,
Around its unexpanded buds;
Like many a voice of one delight,
The winds, the birds, the ocean floods,
The City's voice itself, is soft like Solitude's.
I see the Deep's untrampled floor
With green and purple seaweeds strown;
I see the waves upon the shore,
Like light dissolved in star-showers, thrown:
I sit upon the sands alone,
The lightning of the noontide ocean
Is flashing round me, and a tone
Arises from its measured motion,
How sweet! did any heart now share in my emotion.
Alas! I have nor hope nor health,
Nor peace within nor calm around,
Nor that content surpassing wealth
The sage in meditation found,
And walked with inward glory crowned
Nor fame, nor power, nor love, nor leisure.
Others I see whom these surround
Smiling they live, and call life pleasure;
To me that cup has been dealt in another measure.
Yet now despair itself is mild,
Even as the winds and waters are;
I could lie down like a tired child,
And weep away the life of care
Which I have borne and yet must bear,
Till death like sleep might steal on me,
And I might feel in the warm air
My cheek grow cold, and hear the sea
Breathe o'er my dying brain its last monotony.
Some might lament that I were cold,
As I, when this sweet day is gone,
Which my lost heart, too soon grown old,
Insults with this untimely moan;
They might lament—for I am one
Whom men love not,—and yet regret,
Unlike this day, which, when the sun
Shall on its stainless glory set,
Will linger, though enjoyed, like joy in memory yet.
-Percy Bysshe Shelly
- No dietary change
- Insomnia improved dramatically
- Some hair growth returning at the front
- No new hair growth everywhere else
- Face still shedding, maybe slight improvement
- Wrinkles and sagging improving
- Shedding on body improving
- Arms improving
- Hands possibly improving?
- Legs and feet improving
- Asthma worsening
- Weeping still improving