…. I didn’t do Latin, but I like f*cking incorrectly with words. I was 10 before I could read, and I still have trouble, but most of my friends are very talented with words and languages, writing and such – in fact I seem to collect wordsmiths, songwriters and poets. I’m drawn to those with skills I lack, and envy. But I envy in a good way – I would never take their talent and ability from them. I’ve never been like that. I enjoy it, and wanting it is part of my enjoyment.
This is just an addition, sort of, to yesterday. Today I went to an ENT appointment I’ve had for a long while. I waited 2 hours to see my specialist, by which time the man was a manic speed daemon in speech. But it was ok. Why? Because my condition SSCD (Superior Semi-Circular Canal Dehiscence) only has 2 answers: surgery or nothing. And I was more interested in giving him information. You see the SSCD is a New Condition – it’s one of the New Conditions I’m using for my ESA50 form and claim. When I mentioned ESA to the Specialist (from now on the MR) he had never heard of it, or the DWP. I had expected this, and came prepared. I wrote out 2 sides of A4 explaining how this New Condition affects me. I told him I wanted him to read it and I wanted it to be put in my file. Why? Because the next time I visit, I may see someone else, and I want my account of my life with one working ear on record. I don’t want to have to explain again and again, and I don’t want the next MR to have any f*cking excuse to not know what I’m talking about. I also told him I wanted him to mention what I had written in any official letter he wrote to me in future, so I could send it to the DWP. He asked me to mark the relevant passages (‘cos you know, he has 10 years medical experience and can’t process 2 sides of A4 that affect a life) which I did. I’m hoping this will serve me well. I’ve done all I could.
But back to Surgery or Nothing. My condition is the rarest I have. 0.01% of people have it. When I last saw the MR, he said that surgery was not a good option. Not Very Successful, and means taking bone from somewhere else in my head to plug the hole above my Semi-Circular Canal. Usually it comes from your jaw. It means a lot of scarring. Scarring and surgery for EDS people is BAD. We are told not to have facial surgery (cosmetic) because of it. Having cuts in the jaw to remove bone… bad. Now, I’m going to be very honest with you people. I am not a stunningly beautiful female. I have an ‘interesting face’. But forgetting features (big nose, small mouth, and wonky squint eyes) I have bad skin. I had Chicken Pox age 2 and still have the scars, I’ve had Acne since I was 11 (still do: hello boils, hello cysts) and I have even more scars, discolourations etc. So I fear cuts. I don’t heal well (I bled through my tiny tiny Gallbladder cuts and have a massive 6″ Appendix scar from 1990) and the idea of having a Keloid* monster on my jaw, another on my skull behind my ear, and the real risk of the graft not taking in my skull…. well you may imagine. This time they thought the Surgery was Very Successful. Hmmm. Why? Well, I’ve been here before. I’m a Cynic, I admit, but from experience. You see, surgeons and specialists love rare people. They love the chance to play with us. The more people they get to chop up and stick together, the more they learn about their specialty. And I have rarity on rarity. I have the 0.01% ENT thing, and I have EDS too. They don’t get many of us to the pound. I am the chance to play.
The operation is not time sensitive – I told them that I needed time to think about things. They are going to send me an appointment in the future. I may consider the operation in the future, but not yet. I am still recovering from my Mum’s death.I don’t have one clear, finished room in my whole house**. I am fighting to get ESA and my physical and mental health problems recognised. I’m doing physio every day, get seizures every 2-3 days, migraines every week… It’s not a good time. The last operation I had was in 2000. Last time I was hospitalised with illness was 2012. And the major difference would be the lack of my Mother. I’m not going to lie. My Mum knew how to keep me going and get me well – her intuition of what I needed and when was magic. My Dad does not have this. I could not face having an operation with him having to look after me. Not yet. We’re getting closer, but it would not be possible for him to help me get around and get well yet.
I have to add this: when I got home I had an e-mail from the hospital asking me to rate my appointment experience because ‘patient feedback is important to us’. So where do we begin – 2 hrs wait in a room with no windows and no clock, with no information of waiting times on the board to see a MR who spent a total of 7 minutes talking to me, telling me of an operation but not it’s details*** and complaining how he wasn’t going to get a lunch. He didn’t even close the door of the appointment room. Nice. Oh, and he didn’t mention how last time he saw me he sent me for a test I’d already had and that he had the results for in front of him… nice attention to detail MR. I wanna rant about how if people like me send a DWP Form in late we get f*cked up the a*se, but he can miss a whole file of test results and it’s fine. But I’m not gonna. I’m better than that. And more than likely more tipsy than him. And that is fine indeed.
*Keloid Scars: http://www.nhs.uk/Livewell/skin/Pages/Keloidscarring.aspx
** When my Mum got sick, my Dad destroyed the house to re-decorate. The living room was painted, all the halls and the second bedroom. The bedroom is now lined with oak shelves and books and has a massive TV, sofabed and carpet. The Living Room now has it’s shelves, a makeshift Ikea sofabed- bought for visitors when Mum was sick- and lights. The rest of the house is a mess. All the stuff from everywhere is inside of it. My room is a death-trap. We’ve done a lot, and thrown out a lot, but it takes time when one of you is over 70 and the other one move like they are.
*** I found out details from the web. American health sites are better and more advanced – partly because people there pay for their treatment. Use them for research, but don’t think Private Care is better than the NHS. I’ve had both. The NHS is better. http://otosurgery.org/sscd_surgery.htm