Rachel and the Autoimmune Attacks.

This is just a quick one to summarise what's been going on with me. I'll write another if anything more interesting occurs. Thank you in advance for reading. 

So, for the fifth time, I've been admitted to hospital. 

I've been here for around 5 days, and have been mulling over whether or not to write this post. To me, this particular bought is just a blip, as it is pretty different than how my other admissions have been. 

Once again, I was unwell enough to go to A&E, but unlike the other times, my symptoms were different. In fact, I believe that the symptoms were caught (by me) before the end result. Normally I end up in hospital supremely unwell, with low blood counts and they work backwards to try and find out what caused it. This time, I feel like my symptoms are more indicative of what could be causing the problems and that they are more working to stop my bloods dropping any lower. 

Don't get me wrong, the many many doctors are still trying to figure out what is causing this, but it's no where near as bad as I've been in the past. 

The symptoms have presented themselves as follows: 

• Jaw pain.
• Tongue ulcer. 
• Severe headaches. 
• Chest infection. 
• Rash. 
• Left optic nerve damage. 

A few weeks ago I experienced tunnel vision for a couple of minutes in my left eye. Once this had gone away, I had blurred vision for a bit and, over the following weeks experienced both of these things sporadically. It's not a constant vision issue, though I do have pretty poor long distance sight. Anyway, I booked an eye test, had several investigations and the optician told me that the optic nerve in my eye is a little swollen and damaged. This was the 23rd July 2020. On this same day, I developed jaw pain and the tongue ulcer. The following day the headaches started. By Sunday, I had developed a high temperature and the headaches were even worse. After I phoned 111, I went to A&E. 

I met a really lovely doctor who took the time to listen to me, and asked me what I wanted from coming to hospital. We had a bit of a laugh together and I saw him several times over a period of about 3 hours. Then he admitted me, after having spoken to my consultants in London and I was officially an Inpatient again. For the first time since January 2018. 2 and a half years is a good run, I suppose. 

I've had the chest infection for a good couple of months and the rash on and off for double that. 

I had a CT scan which showed abnormalities in my chest, which could simply be caused by previous infections. It also showed that my spleen is slightly bigger, as is my liver. And there also appears to be a lesion in my spine, in the cartilage of the C7 vertebrae. No one knows what's caused this one, as this is something I've never had/ experienced before. They want to do an MRI to further investigate and possibly a lumbar puncture. 

Blood tests showed that my infection markers, otherwise known as CRP were 72, which is pretty high and my neutrophils were 0.2, which is pretty low. Today, almost 6 days later, the infection markers have gone way down to 6, which is brilliant, but the neutrophils are now 0.19. This could be because my blood is off fighting infection and therefore the levels are low, and they're hoping they start to come back up and then potentially let me go home. 

They also want me to see an ophthalmologist, just to see what is going on with my eyes. I'm hoping nothing too sinister, and that with a new pair of glasses, maybe this will all go back to normal. 

I'm currently staying at Maidstone, having just been moved here from Pembury. And there are a few things I'd like to say about Pembury before I continue. This is not going to be particularly nice, because my experience with Pembury, specifically the doctors, wasn't very good. This obviously excludes the A&E doctor, who was fantastic. 

The problem I find with Pembury, and this is all personal experience, is that they aren't exactly the sort of place that specialises in anything in particular. They deal with people and their ailments as they come and go. Because of this, again in my experience, a lot of the doctors have developed this superiority complex where they believe that they, and they alone, know how to do things and fix things; by extension they look and talk to their patients in a way that can only be described as incredibly condescending. They act like you don't know anything and they feel the need to talk down to you and explain things as if you were a child. They also like to order you meds and change your prescriptions without talking to you about it first. I've dealt with these sort of people before, and there is nothing you can say that will make them realise that you have some knowledge of yourself and your problems. 

One doctor asked me several questions, which I answered honestly, and then asked them again as if he hadn't been listening to a word I said. He then ordered me to have 2 lots of 12 hour saline drops via IV, even though I told him I was eating and drinking fine. Needless to say I refused the IV. No way am I being hooked up to an IV for 24 hours when I don't need it. 

This was the same guy who seemed absolutely convinced that he was going to be the one to solve the mystery case of Rachel and the Autoimmune Attacks. Come on, man. If my consultants, whose entire career is focused on blood and the immune system cant figure it out, some random AMU doctor, who has a very limited idea of what this is all about isn't going to either. Especially if he refuses to listen to the patient. 

So, a bit of advice doctors (though I doubt any are reading this). LISTEN. I am so fed up with having to prove that I understand what you guys are telling me. I am so fed up with not being heard. And I am damn concerned about people who are less likely than me to stand up for themselves. Just because you have a career in medicine and spent however many years at university, doesn't mean you are the absolute best person on the planet. It doesn't mean that you can develop an ego which turns you blind to your actual patients. It certainly doesn't mean "I don't need to read the notes, because there's nothing of value to me there". If you are a doctor, act like one. Be kind to your patients, listen to them, take the time to inform them of changes you would like to make to their prescriptions. Don't treat them like they haven't got any idea about their own problems and that you are the only one who has any inkling as to what "infection" or "neutrophil" means. If you can't respect your patients enough to offer them some decent human respect, then please quit your job and do something that doesn't require empathy. 

I promise that I'm not going to allow myself to be treated like an idiot anymore. If I don't understand something you are saying, I will ask you what you mean. 

And now, this is me signing off. 

Peace out and have a nice day. 

Rachel.