A few days before I was due to see a dermatologist for the first time my left axilla decided to erupt in one of the worst flares I have had. It's hard to describe the pain of it. I couldn't sleep - every single movement made them rub together and made me want to cry with the pain of it. I SHOULD have phoned the doctor - but past experience told me I would most likely be sent straight to hospital and be in surgery having them removed within a few hours - I didn't want that seeing as I had my long awaited specialist appointment coming up. Continually removing individual lumps does NOTHING to stop more coming up - it does give you relief from the current ones but at a price. The wounds have to be repacked every day for 4 weeks and due to the physical nature of my job that means a month off work every time I have them done - and they can be back in the same spot or nearby before the wounds have even healed.
So, instead of seeing the doc I went to work trying not cry with the pain. While out working I felt the scar from my previous op split open from the pressure of the lump under it - cue lots of gunk. There was nothing I could do to dress or clean it at that point and within an hour I started to feel sick and shaky - when I got home and took my uniform off the side of my breast and my upper arm had gone bright red and was hot to the touch. I had some anti bis left over from a previous prescription so took them in the hope it might control things until I could see the derm.
By the time I arrived at my derm appointment I was about as low as I could get. In pain, feeling sick and not really wanting to be out in public (no bra, no deodorant etc). Now, I know med types don't really like you looking into things on the internet too much, but when you have a condition that few doctors have even heard of what the hell else are you going to do? Thanks to the wonderful HS online community I had heard many experiences and read lots of research and I was pretty certain that long term meds were not for me. I already knew what drugs she would try and give me and had come to the conclusion that they were not the solution I needed - even if they forced my HS into remission it would come back either when I stopped taking them or when I became resistant to them.
Disclaimer: This is not to say that long term meds aren't good for some people, some have great success with them, but I had done a LOT of reading and given the stage I was at and my own dislike of taking anti biotics long term I was convinced I didn't want to go down that road.
Well, enter the derm and I knew straight away that this wasn't going to go my way. She asked what was wrong, I told her I had HS and she replied "Where did you get THAT diagnosis from?" - oh dear, not a good start. I'm afraid I burst into tears as here I was at the absolute end of my tether with the pain feeling at times that I would just like to go to sleep and not wake up again, incredibly fragile and feeling anxious at being out in public and it was immediately apparent from her whole demeanour that she was not giving my suffering the respect I needed her to. Anyway she looked at it and agreed it was definitely HS - she was infact quite shocked that it had caused so much scarring and pitting in just 9 months and remarked that other patients she had seen had taken years to progress to this stage - she even called a second derm in to have a look.
Anyway the whole appointment was pretty horrible and degrading, and when I suggested surgery she practically laughed - it was very obvious that she was not going to entertain the idea. So, I ended up with the 2 pills I was expecting her to try and give me (Clindamycin and Rifampicin) and left feeling pretty hopeless.
The pills made me feel very very sick, and the following week was one of the worst of my life mood wise. I felt disgusting, smelly and depressed - I could find no joy in anything and felt like I didn't belong in such a beautiful, wonderful world as ours.
However, little did the derm know when she scoffed at the idea of surgery that I already had an appointment booked with a plastic surgeon 2 weeks later......
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