Month 8 ~ August 2016

August was a very rough month. My scalp started to flare and I really had a very bad oozing on my scalp. My whole pillow was wet as I woke up in the morning. Now my scalp flared, my face, my arms, hands, knees and became more worse at the end of August. I was totally suffering again! Still had the energy to go out and do something, but I felt that I could be housebound again soon!

Reacties

Populaire posts van deze blog

Hello TSW Survivors! (introduction)

Hi and welcome to my blog. This in an introduction post. I am 17,5 months into Topical Steriod Withdrawal (TSW). An illness/condition you get when you stop using steriods, like cremes or oral steriods (like prednison). I think it is time to make a blog about my journey so far and ofcourse update it further in the next months. What you need to know about me: - I am 30 years old and I am living in The Netherlands - I am 17,5 months into TSW - I have Lyme disease - English is not my native language, so mistakes will be there ;) - I did not use a lot of steriods, but tried a lot the last 9 years. So actually I used it 9 years. Not much or every day (or a longer period of time), because it never helped, so I got new ones everytime, but never used much of it. However, in 2015 I got an allergic reaction and decided to use prednison in combination with Dermovate (4) and Elidel. I used the creme every day for 4 months. That was one of the biggest mistakes of my life, because it made me ver

Meer lezen

Month 12 ~ December 2016

O yeah, did I already told you about the itch on my scalp? Wow, it was terrible in december as well! I slept A LOT in december. Sometimes I was still in bed at 17:00 pm. Not normal? Yeah I know, but I was so tired! I had a little surgery that made me miserable. I still hope they didn't use steriods in the local anaesthesia (they used Xylocaïne)!! But I didn't know they sometimes use steriods in anaesthesia. I read later that I have should ask about it, but I didn't. I was too scared to ask after a couple of weeks. So I searched the internet about it and I don't think they did use steriods in the injection. So I slept a lot, and was able to celebrate Christmas, wasn't feeling good, but was able to be with my family. My scalp was painful and very itchy and flaky.

Meer lezen

Month 19 ~ July 2017

So... TSW Month 19!! It is still super difficult! My skin heals on some days but overall I dont feel good. Tired, still no sleep at nights, sleep during the morning and day (from 07:00 till 14:30 pm). I know it is bad to sleep during the day, but whatever I do, I just don't sleep at night!! I am still at home most of the time. I miss life, but I know I have to hold on and that it will be better. I think that my adrenals are tired, weak and I think that is the reason I dont feel well. I just dont know how to solve it! LDN I started LDN 6 weeks ago and I have to be honest. I have side effects from it. I got a terrible migraine, I have headaches, I dont sleep, I am tired and I even got some anxiety and panic attacks. For me it is difficult to "feel" if I have to take more or less. My dose is super low, started at 0,04 mg, and went up to 0,56 mg, but somehow it doesn't feel good. But I know I have to give this a chance. It can take 3 till 6 months or even longer, to se

Meer lezen

My TSW journey - it's a difficult one

Zoeken in deze blog