I totally get where Si is coming from. It’s worrying when you have to go through a big procedure like an LP twice in two weeks without having an answer. I know the potential consequences of not getting this under control which is why it scares me but as you say you are getting good care which is all anyone can ask and that’s a positive. I wish there was something I could do to make it easier.
Just leaving you some love and hugs. Xx
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Paula (22-09-20)
Me too!
Paula (22-09-20)
Well, yesterday was interesting. Mid morning 2 doctors came to see me to do the lumbar puncture - one of which was an consultant anaesthetist who had specialising in childbirth, ie epidurals which is essentially the same procedure as LP. Because the focus was on getting an accurate pressure reading, rather than draining the fluid, I had to lay on my side rather than sitting up. Laying on my side and curling into a ball is really hard because of my dodgy leg.
Despite many attempts, neither of them were able to find the space between my vertebrae and both managed to nick some vertebrae and nerves, which is as painful as it sounds. After letting me rest and have some lunch, another doctor came to see me. He did manage to find the right space but also went through a vein, which bled a lot and blood got into the tube - which stopped much CSF fluid getting into the tube and meant they couldn’t get an accurate reading though the doctor ‘thinks’ my pressures are ok. They decided to stop mucking about and leave it up to the neurologist to decided whether he wants another try but with ultrasound or X-ray.
I thought that was the end of the saga. But my lithium results came back in the afternoon. Turns out my new meds had caused my lithium levels to increase above safe levels and I need to reduce my lithium dose - and lithium toxicity symptoms can mimic IIH symptoms.......
I’m very sore and a little bit traumatised but that’ll pass. I may not forgive Si for pointing out that, if I hadn’t taken my lithium at the wrong time on Friday, I probably wouldn’t have had to have a lumbar puncture at all :/
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.
Ok so me being me, what do I take from this story. A little bit traumatised but that’ll pass. No no no!!! I’m not having that. You have a right to shout and scream and be upset by 3 doctors failing to carry out the procedure correctly and efficiently causing you pain and distress. You are entitled to be concerned about the toxicity levels in your body and the consequences of that. This isn’t just a petty mild annoyance and fobbing it off with terms like “it’s fine” “it is what it is” and “it’ll pass” don’t wash with me. What you have been through is real and “a little bit” traumatic. To ignore the validity of that with BS positivity can actually be damaging.
Paula (22-09-20)
While I get what you’re saying, the reason the doctors had issues was because I was unable to get in the right position because of my leg. No, I’m not saying it was my fault, just that my condition made a difficult procedure harder. It’s not BS positivity, it’s my way of coping with all the crap I’ve had to deal with over the years. Shouting and screaming about it is just not my way - that would just make life harder for me. I am worried about the toxic levels but my dose has been reduced and, hopefully, my next blood test next week will show an improvement.
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.
There is positive and there is glossing over it. You are allowed to be upset. Did you have the same troubles with the previous LP?
Oh and by the way, Si is right. Don’t you hate it when that happens lol
I get it... There are procedures that are made so much more difficult for me because of my issues, doesn't mean that it's my fault either... Because of the state my lower back is in, when an anaesthetist tried giving me an epidural with Ben they hit the wrong place going in and weren't able to do it - the next top consultant anaesthetist I saw when I was pg with Hazel was horrified that someone had tried after looking at my back... He warned me never to have anything like that done without guiding via ultrasound or xray because all of my "markers" are in the wrong place. So I do understand - the same when I had my fibro diagnosis, but sometimes the shock of everything overtakes the shouting and creaming and stamping my feet....
What does Si think? I assume that you're bruised and sore today? Resting?
Do a little of something that makes you happy every day!
Erm, Si called them muppets (not to their faces lol) and told me I was too nice when I tried to defend the doctors..... I’m very bruised and sore and am yet to get dressed so definitely resting
Stella, I’m not glossing over it but I see no point in stressing myself out by throwing a hissy fit over it. The previous LP was fine - but that was because I was allowed to be in an easier position - but one which couldn’t get the exact correct pressure reading they needed this time
The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.
Lol at Si!I assume you're being looked after at home today? Sitting or lying down?
Do a little of something that makes you happy every day!
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