Every time I go to write one of my blogs, it still makes me think, “Wow… another month has gone by and I’m still not healed.” It sucks, it truly does, but here we are at 22 months without any steroids.
I have definitely had a lot of stress these past two months and have gone down the pan with eating the correct foods for my immune system, so I need to get back on that. It’s hard to get rid of the anxiety I face day to day but we push through and slowly train our minds to control those anxieties and hold on to the positives and joys in life.
The itch and extremely dry skin has come back. My neck, face, arms, and hands have taken a beating. I’m going to try and use natural antibacterial treatments to see if that helps. I feel I could have something going on there with bacteria perhaps but who knows.
Also, there is an amazing documentary series out called Betrayal. It’s open to the public this entire weekend! But then you must pay for it after (well worth the buy!!) It has about 80 different doctors and researchers talking about autoimmune disorders and how diet plays such a HUGE role in it. I know people get skeptical and get defensive about ‘natural’ remedies, but come on! Food is what makes our body function. If we feed ourselves processed things, meats shot up with antibiotics, vegetables that have been contained with pesticides and chemicals, and 10x more sugar than we should consume in a day, then ya… our bodies are not going to be doing well. No amount of medication can truly fix that. We need to start seeing solutions in the food we eat. It can make A WORLD of difference!
Just a mess. And it’s hard physically some days, but when fighting this for so long, it’s the mental part of it that becomes the real struggle. Having to deal with this for SO LONG. And there are those of you out there who are 3, 4, 5 YEARS into this. I just want to encourage you to never give up and to truly seek out what you body is trying to tell you. I definitely want to find out what mine is trying to tell me soon. I want to have my blood tested for antibodies and also find out just what I should and should not be eating that could be affecting my gut and healing. Honestly, to me, it’s not all about food when it comes to Red Skin Syndrome because it’s an iatrogenic condition brought on my topical steroids, BUT, food and supplements can be a contributing factor to why healing is not happening. I think there needs to be a way to detox our bodies, too, since we know we aren’t detoxing the steroids properly.
I want to leave you with a bit of positivity. I am have been stretching again and trying to do pushups and crunches again. Perhaps that too has been contributing to my skin issues since sweat makes me itch and get red (it’s so infuriating), but I don’t want to stop doing something that is positive for my body.
Keep those chins up. We will beat this. AND, if you haven’t already, run over to my website, preventabledoc.com, to see what I have been up to with my documentary efforts!
Love, B. R. Wren
6 thoughts on “22 Months TSW”
My condition is very similar to yours at the moment (and we are on the same duration of TSW – my 22th month mark is tomorrow.) It is very difficult for me too, because my symptoms worsened in the last month due to cold weather and dryer air inside. Since I started working in the new job, which is stressful – but so fulfilling for me – I found myself very down with all of it. I want it all to stop already! But i guess TSW has its own life and it’s not ready to die yet. xD I’m thinking of changing the diet too or maybe taking some alternative treatment in the future. Anyways, sorry for the rant and thanks for sharing. 🙂 ❤
LikeLiked by 1 person
You are so so brave to do this. I need to withdraw too but I’m too scared and I just can’t face it.
It’s hard to face. But you will find the strength x
Hi Briana. I’m definitely feeling the same symptoms. I’m on month 10 now, and it’s all going downhill. I was almost back to perfect from around mid May until mid October, while I was on azathioprine and doing light therapy. I think the combination of withrawing from the immunosuppressant, the cold weather, and stress from my first semester at SDSU have all coalesced into a negative force on my skin. I’m even feeling that nerve pain stuff creeping back. Ugh. It sucks, I think I’m going to have to get back on the immunossupressant again just to be able to work and go to school. (You were right about it). Apparently my skin will eat itself alive without it.
Thank you SO so so much for all you have done to increase awareness of TSW…when I found your videos a year ago I was miserable and absolutely dumbfounded by what was happening to my skin and body, and no doctor would give me any answer other than “try this new cortisone cream” or “you need IV steroids.” Finally (a year after first discovering steroid addiction) I have found the strength and time to withdraw. Just know that you are amazing, what you are doing for yourself and other skin warriors is so important, and you will get through this!! You’ve already come so far, stay strong! ❤
I am so grateful for this post. I truly appreciate this. I send you lots of love and wish you the best on this journey