Picture of my lil dog at his favourite place, the beach xx
I know I'm not the best advocator for myself, in part, because if you act as a medical professional they won't treat you and if you act reserved they think your 'one of those hypochondriac medical people, who think they've got every illness under the sun'.
So, for just as much to appease my neurologist as use, I had a twenty minute telephone appt with neuropyschiatry. The main takeaways were your history, your MRIs, your EEGs all are indicative of seizures, TBI and lupus damage what a surprise.... I'm not insane yet... There's no functional element to it. Your just struggling because you have been given no alternative medication. I was like yes I know, but they say I'm anxious, it's all in my head, and tbh, I'm in alot of pain from lupus, I have uncontrolled epilepsy, and I'm progressively losing all function and feeling in my right side. So it isn't a nice feeling. Heard nothing since sadly.
My lupus hasn't recovered since being off the lamotrigine which nearly wiped me out completely. It did improve to an extent but it's nothing like where I was. But I've been working hard to change my outlook ☺️😉 and been trying to throw myself into work. At times, like you all know, it's hard when you're not what you were. So it is important to meet yourself in the now and accept it. - my colleagues are.pushing me again, with the amount of suturing heads and faces their making me do. They're trying to get my right arm to work, boy it takes all my effort!
The GP sadly won't even give me any pain relief. Claims to need the rheumis input. I'm like, just fix me up doc, otherwise I might end up like a past pt of mine who bought some street.made CBD oil, which was the most.potent thing I've ever smelt, and got herself thoroughly stoned in an attempt to self manage her pain.
Rheumi silent, sadly, in Edinburgh, the doctor I got was a locum, so it takes weeks to months before she reappears. 😞 Plus she really ain't understanding I need help..... Neuro is still not speaking to me, as they asked for a re referral that my GP won't do and also won't let me have contact with the epilepsy nurses. So the stale mate continues. ...
The weekend, as I've mentioned, was a disaster with a flood in my flat, that destroyed the flat below, which I feel incredibly guilty about. That's in limbo. But God has got me through x 💖 I have a few new friends, and hopefully that continues to flourish with them. It can be hard trying to trust again, but I'm trying to. Hopefully getting my hand on a private counsellor soon, years of domestic issues hasn't been kind on my view of self and I want to regain that, so that.i can better cope with the issues at hand. 🤗💖 So, in short I'm trying to pick myself up and shake off the cobwebs and give it my all. That still means severe aches, hrs lying in bed in pain, tired and fatigued, eyes as dry as a bone, freezing and smurfy but still finding peace amongst the chaos.
So go forth and flourish as your able!
Go team! You lovely bunch of semi lupey lupies😜 and have a good week!
Lottie x
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LottieLou96
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Hi Lottie!*Disclaimer* I hang out in these parts but don’t have any kind of Lupus dx. I was misdiagnosed with sero-negRA in 2016 and took MTX until 2017 when it was decided that wasn’t it🤷♀️. Maybe Behcets, Lupus or something else. Well, sign me up for several something else’s with Stiff Person Syndrome (aka Moersch Woltman) which is primary. Prevalence is 1:1,000,000. There isn’t a forum on here for that and SLE is still in the running.
I do understand frustration with all your stated elements of “lack” or system failings. I am in a different healthcare system by the similarities are striking. I never tell my providers what I know. My EHR has be cut and pasted so many times I think it might still say I’m a student in places. 😂 . I call myself a “health educator” for now. I’ve been in healthcare since the 80s. We charted with carbon paper back then.
I have a fair amount of disability. There are few/no? RCTs for SPS, so it’s all pretty much trial and error. I was working for a nonprofit part-time when the pandemic hit. Been home looking for other suitable employ since. I also have chronic migraines and had a reaction to my COVID vaccine last year (Pfizer) and it spurred a 200 day headache. Only a CGRP Mab stopped it. Now I am on monthly Aimovig injections. If it isn’t one thing it seems like it’s another. I do have a wonderful neurologist. I call him the Wizard. He brilliant. He colors outside the lines.
Alas, it is the rest of the system that keeps me on my toes and very often makes me resign myself to find a workaround myself. I used to love my PCP who is also board certified in sports Med. I’m not sure if she’s caught up in the political machinations of the Uni clinic/hosp/also she’s the co-dir of the sports Med fellowship program and the team physician at the state university here. Likely, too busy to take care of complicated ol’ me any more. Last time my Hb and Ferritin was low, she asked me if I wasted to supplement or skip to infusion (knowing what my answer would me…supps never work. Heme always puts me thru to the infusion lab. 🤦🏽♀️😃
Keys to my sanity:
1.) I had a great counselor who assured me of my sanity. I appreciated that she was formerly an RN. She was older than me and very wise. She made me work for it.
2.) When trying to solve a healthcare issue, look at your notes from your previous visit from each specialty in question. Where did the treatment plan fail? Follow up and find out why. If there is an appointment scheduled, prepare YOUR notes now for how you want it to work—not just for the step they dropped but for the next two and what that might look like. Think about the possibilities now because you might feel like a deer in the headlights during the appointment and you want to be able to negotiate.
3.)Always keep track of any new symptoms. Not just what but what brings it on, intensity, qualities, what makes it better?what have you tried? Etc.
4.) Make them think it was their idea (I.e. a little bit of honey goes a long way). And make them laugh before you leave. Laughter is good medicine!😂
I hope at least something in here is useful. You definitely are not on this journey alone. ✨💐
I think my problem is getting them to truly understand that it changes every second of the day, and this snippet, or you speaking over the phone really doesn't cut it. And I guess in the other way, they don't seem to care about my QoL.
I spend time preparing for my appointments, in my health book, and diagram it all out. But all I get is the same response over the telephone you're just anxious. Send me to a psych and they tell me I'm in pain. It's like doing loop de loops.
It all started back, eleven years ago, when my fam gave an incorrect narrative out, and have been pressing ever since to get me committed to an asylum due to being psychotic. Sadly when I got I'll with lupus, they decided I was demon possessed. Throwing copious amounts of holy water at me didn't help though 😅 - albeit I don't think they have these records... But again last yr the gp proclaimed my brain bleed and seizures were anxiety. So it's a cycle that has definitely gotten old.
Glad you have the wizard and a good counsellor to keep you sane. Its good to have someone who believes and works with you. It's under credited the help it brings when done well.
It's hard to keep up to date with everything for sure. And keep on top. As you say, it becomes more complex as time goes on. 🤕
Hopefully I can get some pain relief for my gruelling muscle aches and pain. I had a terrible dream haha, last night, dreamt of ED, where I work, and a patient, telling me he's got my street bought prescription drugs. I asked for valies and cocodamol in my dream but they gave me ibuprofen tablets and demanded 2000 pounds payment or they tell work on me and loose my licence.😅😅😅 - boy I must be getting desperate haha.
I will make it seem like their idea if I can, I'm just a bit tired of repeating myself.
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