Well I finally made it 4 years into TSW.
Sadly, I'm not healed. I thought I would be by now, but I'm not.
On the positive side, TSW isn't really preventing me from doing anything. I can do jobs, go out and day trips and socialise. My skin isn't in such a terrible state that it holds me back in any way.
On the downside, it's still far from perfect. The moisturiser withdrawal is helping a lot and my skin isn't in an active flare, but it doesn't look completely normal. It's still dry and blotchy with uneven tone.
The last year has been a hard one for me in TSW, as my progress seemed to go backwards rather than forwards. Back at the 21 month point my skin was almost perfect, but months 37-48 have been much harder and that has been hard to deal with psychologically.
At 4 years in, I thought I'd have all the answers, but I seem to have more questions! I form a hypothesis and believe it and then something blows it out of the water and changes everything.
I know TSW is not as simple or linear as I expected it to be in the beginning. I expected gradual improvement and progress, but my progress has been all over the place. Why? I have no idea, but everyone else seems to be the same too.
I read that Dr Rapaport has reported seeing longer healing times in his patients due to increased usage of potent steroids in recent years. What we thought would be a 12-18 month healing process can take 5-7 years, maybe more, who knows?
I remain strangely optimistic, even at 4 years in. TSW is not so unbearable that I can't cope and I'm grateful for that. I read a story recently of someone who healed completely at the 5 year mark, so maybe this time next year I will be done with this.
I usually make a big deal of my anniversary posts by writing a special blogpost or writing a month by month analysis of the preceding year. I think I will be more understated this time round. I feel like I've already said everything that needs to be said.
My big goal this coming year will be converting from my current steroid inhaler to a cromolyn preventer. I don't know whether my doctor will let me do this yet, and I'm not even going to attempt it until the weather improves, as winter is a tough time for me. I scared that being completely steroid free may put me into a secondary withdrawal, but I'll cross that bridge when I come to it.
I probably won't be blogging much over the coming year; just the odd photo update and any news that happens to be of interest.
I'm sure that opponents of TSW will be taking this opportunity to have a good laugh at my expense and consider me a lunatic for persisting for 4 years with no immediate resolution in sight. I couldn't care less what they think. I'm glad to be off the steroid creams and it doesn't bear thinking about the amount of tubes I would have gotten though in the last 4 years if I hadn't stopped when I did. That has to be better for my long term health than being dependent on the 'roids. Has it been tough? Yes, at times, but most the time my skin has just been stagnant and not too much bother. I'm happy with the decision I made and I remain determined to be steroid free, whether I eventually heal or not.
Best wishes to everyone going through this. Here's hoping that the coming year will bring increased awareness in the medical community and doctors will stop being so quick to prescribe steroid cream as the answer to everything.
5 comments:
Oh goodness, has it already been another year? It doesn't feel like your three year update was that long ago. I think the understated approach works in this case. My skin is still pretty stagnant as well. I think I've given up trying to predict what is going to happen, because it is beyond the point where it can be rationalized by some sort of pattern. We just know too little about TSW right now but I hope that changes soon. It's been a pleasure keeping up to date with your blog, especially since yours was one of the first ones I read besides Rochelles. I read every single post and found it gave a good idea of some of the smaller flare patterns. I dearly hope you can be completely steroid free. I am going to go out on a limb and predict you will get withdrawal symptoms, but I imagine it won't be as severe as it has been in the past. I hope you will continue to keep up with my blog too! We can get through it together.
What a strong lady you are Louise. You've got the right attitude for this battle. Congratulations on reaching four years. I hope that 2016 is your year to be done with TSW.
All the best & good luck!.
Thank you for your kind words. It means a lot to receive encouragement from those who read the blog. I'm hoping 2016 will be my final TSW year too! Best wishes. X
Louise, I think you are amazing, for both blogging this entire experience but also remaining optimistic. I just started year four and am currently in big flare #3. While not nearly as scary or emotionally traumatizing as last summer's big flare #2, it is such a mental blow to see the healthy, good skin I have for months in between these flares just disintegrate. It's almost harder to keep at this mentally now than it is physically. And when you see people stop blogging when they seem to be healed at two or three years in, it makes it worse. So while I am horribly disappointed for you to see the flares still come, you give me hope that I (we) are not the only ones and that we may beat this thing yet.
Thanks Mandy. My goal is to try and present a real picture of the TSW process. Like I've said before, I healed pretty much at month 21 and it would have been easy for me to stop blogging and declare I was done, but obviously TSW doesn't work like that and sadly, year 3 was tough for me. I'd ultimately like to get to a point when I'm healed and can write a years worth of updates without a flare. At that point I'd consider myself completely healed. There's always hope and we have to have the optimistic view that this year will be the last one in TSW! Xxx
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