Well my long awaited Rheumatology appointment lasted just ten minutes. I told him that my eyes, nose, mouth, skin, hair and vagina were all dry, painfully so. I told him that my nose had bled for 8 days following nasal sores that the ENT specialist believed was Bechets. I told him that my mouth, tongue and genital sores had been present for 8 weeks this year. That I have repeated infections of the chest, nose, cellulitis, ears, throat. I have poor balance and had ripped my tendons. That my asthma had been uncontrolled for 6 months. That I have acid reflux, gut spasms and veer between constipation and diarrheoa. That I itch and scratch until I bleed. That I have now been diagnosed with Hemplegic Migraine. That I am depressed and have not had one day where I felt well. That my hands and feet tingle constantly and burn bright red.
His response…we will put you back on Hydroxychloroquine and Colchicine?? But I still have fluid behind my eyes and the Optician strongly advised that I should not take it and the Colchicine gives me diarrhea???
He said well the Optician is not an ophthalmologist. What did the ophthalmologist say? I haven’t seen one. Why? Because no one has referred me.
So are you refusing to take Hydroxychloroquine. Yes I am. Based on what the Optician said? Yes. Big sigh from him.
Are you also refusing to take Colchicine? It makes me have diarrhea. Well you could try it again every other day. Fine.
Good I will send you a prescription and get some bloods done by your GP. Bye.
Sorry are you not going to even see me?
Do you want to be seen?
Of course. I am suffering really badly.
Right I will request your next appointment is face to face. Bye.
I feel demoralised and uncared for. This is just so wrong on so many levels. I thought he was different. How wrong was I 😞