Monday, 16 November 2015

334 Days off Topical Steroids

After a bit of an absence, it's time for an update. A great deal has happened since my last post.

I was feeling pretty good for a while there. I guess my body had other ideas though. For some reason unknown to me and I still can't make any sense of it, shortly after my last update my body decided that it had had enough of me being active and doing things, and started overheating like mad, EVERY time I decided to get up out of bed and do anything. Like, to the point where I could not even function. I would sweat like mad, which would make my skin itch and burn like crazy, my head would swim and I had trouble breathing. This was not very fun and this lasted for over a month where all I really could do was lie in bed with my fan on 90% of the time (thank god for Netflix).

During these weeks I was also majorly struggling with bad flares on my shoulders, collarbone and neck. 

I also managed to lose 90% of my eyebrows which was quite distressing.

Fast forwarding to around four weeks ago now, I noticed that I had developed two tiny bumps in the corner of my lip which I didn't really think anything of. A few days later they had spread further across my lip and chin and were very itchy and hurt so much. It had me quite worried so I saw my GP. He looked at it, said it was a staph infection and sent me away with antibiotics. By the next day it was still spreading massively and was so insanely painful my boyfriend had to take me to the ER. The doctor there also thought it was staph and doubled my dose of antibiotics and said I needed to clean my face at home to take care of it. After going home and following his instructions the pain was so intense I couldn't stop crying and screaming so we went back into the ER and saw the same doctor who gave me pain medication and told me to come back if it got worse again.

The next morning my boyfriend woke me up and said we needed to go back into the ER because it had spread further across my face and some of the lesions were turning black which was terrifying.

We went back in and I was admitted. I had to make it clear to everyone there that I could not take any oral or topical corticosteroids which involved me explaining my situation to the many doctors and nurses I saw. All of which had never heard of TSW. Everyone was very understanding and said no one was going to force me to take any and they tried to find a treatment plan that didn't involve me taking oral prednisone which was their first treatment option.

They still didn't know what my infection was but increased my antibiotics dose again and gave them to me intravenously.

Over the next three days my infection continued to worsen and I needed to be on strong painkillers constantly. I was still on IV antibiotics and had taken two days worth of oral prednisone (something I was hoping I would never have to do knowing it would set me back in my withdrawal) as the doctors thought it was my best chance of getting better and I didn't really have another option so I took it. I knew that there was something that the doctors were missing as I kept gettng worse even though they had doubled my antibiotics dose again without my infection responding. Luckily that day a dermatologist came in to see me and he and my doctor finally correctly diagnosed my infection as a viral infection called eczema herpeticum, started me on oral antivirals and said I didn't have to take anymore doses of prednisone (thank god). 

After that I stayed in the hospital for another few days while my infection improved enough for me to go home and finish recovering. It's been two weeks since then and my face is very pink and still recovering but definitely on the mend (when I came home I also noticed that a lot of my eyebrows had grown back so yay). 

This infection was the scariest, most painful thing I have ever endured, but I am thankful that I was looked after by lovely doctors and amazing nurses who made sure I was as comfortable as I could possibly be while I was in such a bad way. I cannot begin to express the gratitude I feel for their thoughtfulness and care, and also to my boyfriend who was with me in the hospital every day.

Luckily during his time my TSW symptoms calmed down enough so that they weren't really bothering me while I was dealing with my infection. The prednisone probably also had something to do with it. Since coming home ny skin has gotten a bit worse, especially on my arms and hands and I feel like my skin is definitely rebounding after taking the prednisone.

So a bit of a warning to finish off, especially to those in TSW, if you have anything that you suspect is an infection, it is very tempting to want to treat it yourself, but go to the doctors anyway to make sure it isn't anything serious and to get the correct treatment. It's not worth it getting worse. Also just make sure that eczema herpeticum is on their radar. The reason my infection got so bad is because none of my doctors had seen eczema herpeticum before and so weren't able to diagnose it and get me on the correct treatment before it got to the point that it did.

So yeah, it's definitely been a rough few months but I'm still moving along (I'm at 11 months TSW now) and as always, still hoping things will get much better soon.

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