I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.
Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!
I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!
He looked for signs of arthritis (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.
Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.
He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.
He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.
Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.
I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.
I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.
So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.
Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…
Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.