Vasculitis sucks! – living with a chronic illness

Yesterday was so long and exhausting, not only did I have to go to Christchurch hospital but I also had to go to the chemist in Bournemouth hospital… but that’s a whole other story.

Yesterday I saw a vasculitis nurse because I’ve been having nosebleeds and I’ve had a chesty cough for a few weeks.

But this nurse wasn’t qualified to write a prescription and she wasn’t qualified to listen to my chest. It was all very frustrating because as my bloods, blood pressure and pee sample we’re all fine there wasn’t much she could do…

So she ended up calling in my Doctor to listen to my chest, which of course was clear. But he gave me a prescription for antibiotics as I have been coughing up green crap so that’s indicative of an infection, but I have no other real signs then that. He also is going to refer me to another ENT doctor as my current one is a jerk! Last time I saw him I was really ill but because my nose looked fine then I must be fine… so hopefully a new ENT doc will be more thorough.

The only good thing the nurse did notice with me is that I’m not steady on my feet and she asked me questions about my legs and I explained my knees bend back and both knees turn in and as a child I had my shoes built up by the hospital and had special in souls made as well, but I’ve had nothing as an adult other then physio on my legs. So she’s going to refer me to a physiotherapist, which is cool and a pediatrist to have a look at me, although I’m not sure in souls will fix this problem but we’ll see what happens. I’ve had problems since with my legs since I was born so I’m not sure how much these appointments will help, but I can only go and see.

After I got my prescription they said I needed to go to the boots in Bournemouth, so I assumed they meant in town, but what they didn’t say was they meant Bournemouth hospital.

I got to the boots in town and they said I needed to go to Bournemouth hospital. I was so angry because by that point I’d been up since 6 am, out since 7:45 am and it was now midday and I was absolutely exhausted and in so much pain with my joints.

I had to wait for half an hour for the bus and when I got to the hospital I was waiting for about 25 mins for my meds.

I didn’t have to wait too long for the bus back but that took an hour. M

I slept for a bit when I got in, which was much needed.

I’m hoping the antibiotics work and my chest feels better and hopefully these nose bleeds will stop.

On top of all that my gender dysphoria was bad but I’ll leave that for another blog.

Peace out

Zak

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