***The subject sounds like as if this topic is only for people with sickness but this might make well-conditioned people’s life also a little easier. (^_^)b ***
I have been sharing some of my personal thoughts and inspirations that might be able to help other people on this blog, as well as introducing ‘No Moisturize Treatment (NMT)’ for Topical Steroid Withdrawal (TSW) patients (Atopic Dermatitis/eczema patients who were on Topical Steroids, stopping steroids completely and experiencing horrible side effects) and trying to encourage them as an experiencer of VERY severe one.
For many sufferers going through severe withdrawal symptoms and their families, finding a doctor or hospital that understands TSW is very difficult.
Many people are suffering from this condition, and every single day, I receive many questions and consultation requests from all over Japan, and all over the world.
Also, using SNS, many people contact me directly about their conditions. The numbers of questions and consults are astounding though I’m not a dermatologist…..lol
Tokuko is trying to answer questions from all over the world…day in, day out….without sleeping…… ZZZZzzz…. (?_?)……lol
Since I have experienced severe symptoms, I can really understand what all of you are going through. It really is a hell-ish journey, and so many have no clue about what to do, so I try to answer all the questions to my best ability.
However, since I do this all on my own, there is a limit to how much I can do. Although I read each and every comment and your questions, hope you can understand if I cannot write back to every single one of you.
For this reason, if I receive many similar questions, I will write the answer as a blog post here.
Also, many of you read the comments section as well, and if there were some questions and answers that were very useful in it, I will edit it and make it a post as well.
Today’s question is from a very kind-hearted mother, who has a daughter with severe Topical Steroid Withdrawal symptoms. We have already exchanged emails sometimes in the past in the comment column.
The daughter started NMT (No Moisturizing Treatment), and has been sleeping better, but now her oozing has increased. With the ongoing symptoms, she is feeling afraid, and asks how long will it take for her daughter’s symptoms to subside.
I totally understand that you also want to know how long it will take to heal and how long did it take in Tokuko’s case because I receive similar questions every single day. I can feel her genuine concern for her daughter’s well being as well.
My answer to her is…
When there is an issue with lots of oozing, we learned that we must limit our liquid intake at the Hannan Chuo Hospital (in Osaka, Japan). Even for non-oozing patients, liquid restriction is done there, and after being released from the hospital, we still continue to restrict liquids to stay course on the treatment.
When I was hospitalized, my legs were double their size with edema so my water restriction was very strict (I felt like I was in the desert, dying of thirst…lol), and I ended up losing 12kg just in water weight the first week! Then the non stop oozing that I had finally stopped!
***Please understand that it is in my ultra severe case. Needed to exhaust excess water in urgent due to severe hypoalbuminemia.***
I am not in a position to offer a medical advice but please take ‘water restriction’ into account. (***Please note that I did this under a doctor’s surveillance.)
Also, many people ask me,
‘When will I heal?’
‘How much longer will it take?’
‘With this symptom, how long will it take to heal?’
They send me their photos of affected parts, and ask me what their future holds.
Personally, since everyone’s symptoms, severeness, location of symptoms, TS usage time and strength, body type, withdrawl start time, etc. all differs individually, I feel that there is no point in trying to predict the future or compare with each other. (We must also remember that it is very hard to gather data for dermatitis conditions. This in itself tells you that there may be no point in trying to figure it out.)
It sounds to me that your daughter’s condition is still benign compared to the symptoms I had.
When I was recuperating at home,
I was covered with dermatitis from my head to toes. There were no normal parts.
My legs became double their size many times, I could not walk from the severe pain,
looked like a burn victim with no skin,
lost 80% of my hair twice,
looked like a completely different person with swollen face,
and if I were to take off my jacket, my dry skin would shed and I would have a handful of dead skin flakes…
I continued this kind of flare cycle many times. I guess there’s no need to compare with me.
(And even then I could not find a hospital that would accept hospitalization.)
Even with this kind of severe symptoms, after being hospitalized and implementing the NMT, my symptoms cleared after 3 months in my case. I just learned how to accomplish the treatment and am just disseminating this great info to other sufferers with TSW. You can search the whole world, but you will not find a magic cure for this condition.
During my hospital stay, I learned how to improve my Natural Self Healing Abilities.
I used Dr.Kenji Sato’s method (NMT) there and was encouraged by my hospital mates who left the hospital in a very good condition. Also, I read Dr.Sato’s book (in Japanese only…), listened to what he told me to do, and believed with my whole heart that this treatment would work.
Each day I just did what I could do best, in that moment.
***When I was hospitalized, I was unable to walk, and was even prohibited to try. Even when I was finally able to walk, the pain was SO bad that I could barely walk 32 feet (10 m) away, panting with strong pain that still remained then. Going to the bathroom was a huge deal, and I would have to give my all to go. Exercising did not start until the very end of my hospitalization (though we had to do). Even then, my rebound flare symptoms subsided within 3 months.***
Again, I am no doctor, and cannot give medical advice, but I can share what I have experienced.
I mean, this is all that I can do for fellow sufferers as a non-medical profession.
This may sound harsh to you, but if you are constantly searching for others to comfort you, you will not be able to cultivate your strength that is within you. Without growing your strength, you will be unable to fight the next challenge when it comes.
Rather than waiting for someone to tell you ‘Don’t worry, everything will be okay!’, ‘You will heal soon!’, you can find something to be thankful in your life, RIGHT NOW and RIGHT HERE, and by doing so, your heart will begin to relax little by little, and day by day. Unless we do this, when another problem, a symptom, will come up again, you will start to worry with no end in sight.
I talk a lot about ‘Promoting your cheery mood by yourself to find your own joy.’ on this blog, and it is about finding something that you are truly grateful for where you are. When you find something to be grateful for, your are improving your mood by yourself.
If you become dependent on others to make you happy, you may feel relieved right after you talk to someone who encourages you, but when another problem arises, what will you do? Most likely, you will again need to talk to someone, and the cycle goes on and on…
The kind hearted people who listen to your story probably truly want to help you. However, you must remember that they are expending their own energy to listen and accept whatever you must share, and will have to recover after listening to your stories.
We must be able to make ourselves happy. Once you are able to do this, life becomes so much easier and that is why I am sharing this with you. When we overcome our challenges is when we start to cultivate our strength. (However, make sure you are not trying to make grouchy people happy either, this will create a lot of stress. Make yourself happy ‘by yourself’.)
In this blog I wish to share these kind of tips on ‘cultivating your own happiness’ too, as all of us will face challenges and adversity.
After trying many treatments available for Topical Steroid Withdrawal, what I can say is that following Dr. Kenji Sato’s advice that I lerned in the hospital, and committing to the treatment gave me the quickest results. Again, as a non medical profession, that is all I can say.
If you choose this treatment, though it is up to you which treatment you will take, and if you have a doctor who you trust and who reassures you that you are in ‘good physical health’ while on the treatment…just keep on keeping on.
Try not to worry about this symptom, or that new symptom, but even in tribulation, try to find something in your life that you are blessed in…and hold on as the time passes.
Everything takes time. When you ride a train, you must pass many stations to get to your destination. If you get off each train station and wonder, ‘I’m still not where I want to go!’, it will be kind of a waste of time and energy to worry about a thing.
If you asked, ‘How come it is not my destination here?’ to someone else in the middle of your way, he/she will be hard-pressed to know how to respond….lol
If you have decided which direction you want to go, and you have been taught HOW to get there..COMMIT, and then just keep on going!
It will take time, and there is nothing you can do about that.
I have already explained about approximate healing time in the hospital as a sample. Remember. It is the destination where you are heading for.
It seems that you truly care for your daughter. So the fact that you have a good doctor by your side is a wonderful environment for you and your daughter and you can keep being a person who your daughter can express her feeling under adversity. Don’t you think it is really great already? So please try to see such very very GOOD things in your life and be happy!
The goal is not the perfect healing. The real goal is that you are not controlled by the sickness.
The best way to heal yourself is finding things to be grateful for. Rather than finding every symptom to worry about, try to find things you are thankful about. Even if you are filled with anxiousness, unfortunately, there is nothing you can do for your daughter’s current symptoms ‘right away’. so all you can do is shift your perspective.
Again, this is an advice from a non medical profession, and I am not sure how much of a help it is for you. However, since your daughter is in a situation where you cannot control, I wish that your heart would be lightened even just a little bit. I’ll be happy if I can be of any help.
Please take care.
Our heart is always up to ourselves.
Only you can control your heart and outlook on life.
Once you truly realize this, I am sure you will have a very bright future.
As much as possible, please overcome this challenge with a light heart.
I am rooting for all of you!
Have a GREAT day!
Translated by Hikari M.
Edited by Tokuko Abfab