Well, for those needing an update on the state of the mind, dont say I dont provide. If you’re not interested, just wait patiently for the next blog, and see what you get!
Well, first the good news from yesterday, I got the letter advising me of the new date for my MRI at least. I know some American’s will react to the date, September 7th. My 2 dearest friends looking to clear my health issues, one like me, thought the date, given its a free service (relatively) on the NHS thought the date respectable, which considering they have to fit it in to availability at shorter than normal periods of wait, I can live with it. The other dear friend is too used to the American System wasnt so impressed, but I’ll settle for that. I will have to get myself there, but given one friend, who used to pay my prescriptions for my back (now free since 60) still sends me some money, that will pay for the taxis at least, which will be the easiest way to travel there and back, as others will be away at that time. I’d still rather get the EEG second take done as well, but this is more critical in my eyes, anyway.
The complex side of the health thing yesterday was my pills for my ‘epilepsy’ (assumed to be) was that I sent in a request for more pills yesterday, which got rejected. What happened is the pharmacy should have sent me 2 boxes last time around (new dosage), but only sent one, so I’ve ran out quicker than normal. So the system rejected request, as it dont read notes, but thankfully doctors do, so I have now got more coming, anyway. I have enough until Friday, so I will survive…
Mind, I have to plan on getting to town this week to the Job Centre, to pass over my latest sickness note, so they can arrange medical, to clear me as medically unable to work in future. For all the things I hear about Universal Credit, my contact there is a wonderful woman, just wants to get it all sorted so I can put all this fuss behind me. Thanks, Becky! But yes, I, or a contact has to get the form to her via town so that this process is being done. Oh, and thanks, Madi, for prompt sending to me.
But yes, I’ll be happy when thats in progress, the pills actually arrive (60 days worth), and the MRI actually happens (even if I will enjoy it), and I can get on with the rest of my life. Oh fine, that blows a visit to Rotwang while the others are away, but other than that, lol…
Right, video time. What my life seems to revolve around at present
Yes, I know its been a while since the previous blog, but unfortunately there has been a good reason. Saturday, seemingly I had another seizure. I know, I really could do without them, but such is life that I seem to be stuck with them now. This one was seemingly back to the old formula, I knew nothing about it at the time. It seems I did come round after a short period of time, so was just put to bed to recover (as they were advised), and some time in the middle of Monday morning I finally came around sufficiently to get up. I was apparently woken a few times to check I was alive, and to take my pills, but was otherwise just left to recover.
I took the choice to go up the hospital on Monday, as I was still a bit ‘woozy’ but after a few hours I got cleared, and came home again. I cant say the hospital handled the next step brilliantly, first offering me transport home, only to then eventually be told they didnt do that. Let me say that didnt surprise me, but why offer it in that case?
I did eventually sort out a taxi at the second attempt to get me home, which seemed an excessive fare, but other than that…
Unfortunately all this meant that both the tests that were meant to happen over the weekend never happened, which frustrated me, but such is life, as they will need to be rearranged. Hopefully I dont have to wait 3 months for another MRI, because I think a friend in US will blow his temper if I do. I suspect the EEG will get rearranged after an apology, and explanation though. I have to check with someone for availability to get me there, but otherwise.. Not that its my fault, but all the same…
Oh, and I think thats it for work too. My bosses have been wonderful in giving me time to get things sorted, but my half pay thing runs out at the end of next month, and being practical, after Saturday, I’m not working again anytime soon, so the inevitable is going to happen, thats it. Well I never thought it would end like this, but so it seems… I know, in the old days, I would have retired at 60, so… Ah well, I can get on with considering getting something ‘lopped off’ I guess? I wonder what will be the first location that I will have visited as a guy, a ‘girl’, and as a proper woman? A lot will depend on the date you officially say I was a ‘girl’ lol? If you say its 2002, that takes out most of US (beyond New England), but if its 2009 (official transition) then its more likely US, though ironically not LA (never as a guy). A lot is going to depend when the ‘snip’ happens, I guess?
I must admit, it will be nice to be able to wear a swimsuit, or dress, and not worry about I might be revealing, I must admit. Anyway, thats the depressing news, or however you want to look at it. So on to the video. What I felt when I realised I’d had another seizure, I guess?
Fine, I was going to leave the whole scan thing until the weekend, probably until after the experience on Sunday, but fine, events today lead to a bit of a cheat. I probably will still tell curious readers what an MRI scan is like, after the event, but anyway… Oh agreed, might have been fun to do in a silver bodysuit, given the way you go into the tube, and everything, but anyway, I’m sure the only person who would see me wouldnt get the joke, besides.
When I had the EEG, I was told that the results didnt show much a clue as to where the issue lay as to why I was having the seizures, and that I might have to do a follow up, after sleep deprivation to get more of a clue. But then I got the appointment for the MRI scan, and hadnt heard anything about the follow up, so I assumed it wasnt going to happen, given I’m now only 3 days away from the ‘robotisation’ pod, but I was wrong.
Got a call this morning from the hospital at Halifax that did the EEG, and yes, I do need to do the sleep deprivation follow up after all. Silly thing is, even taking the first appointment available, its the day after the MRI scan! I suppose they can tie the 2 together, hopefully work out where the issue lays in the brain, then focus on that area from the MRI scan. Hopefully after that they can work out what the problem is, assuming they can find a brain, and take it from there.
So yes, the weekend is going to be fun, for sure. I’m going to have to be up slightly earlier than normal on Sunday, to be at the hospital for the ‘robot makeover’ on Sunday morning at 10.15 (I wish), and then Sunday night I have to lose half a night of sleep, so that my mind is ready for brainwashing on Monday morning, at 9.45. I will probably go with the option of waking up in the early hours of the morning (about 4.30 or so), as I think thats the easier way for me, personally. The theory is that disrupting my sleep cycle will make the brain more likely to give clues as to what is wrong up there, fingers crossed. Some people have no sleep the night before this, but I suspect they just want to disrupt my brain, not set off a full blown seizure, but anyway…
Oh, dont get me wrong, the idea of laying down, hopefully sleeping for 2-3 hours, wired up to a ton of electrodes appeals to me totally. If they accidentally brainwash me while doing so, wouldnt that be fun? If they accidentally disrupted my brain so that I came out as a chirpy Oklahoma girl (no prizes who), then that could be interesting! The only shame with not having one of those phones with a camera is that I cant get a picture of me all wired up, ah well!
Hopefully these 2 scans will provide the needed results, and at least, good or bad, I can find out what the brain issue is, and how it will affect the rest of my life. Well, unless its Clara trying to take full control, in which case…, I’m ready for my audition, Mr Berkeley, lol?
As some might have guessed, there is a subject I’d much rather be discussing tonight, but for now, I have to be a good neutral girl on UK politics, so…lol
OK, video time. Its the way I’d love my hair done (once only, probably) but its a similar level of wiring to what I will ‘suffer’ on Monday. Be patient, it does get there
Alright, given that I’m assuming most care as to how the scan went on Friday, I’d better cover that tonight? Great shame, as its the 72nd anniversary of the alien spacecraft ‘landing’ at Roswell, but maybe I can do that next time, though probably be the other blog. So anyway, lets do the serious version of events here, and maybe do a more ‘far fetched’ version on the other one?
I must admit it, no surprise, I thoroughly enjoyed having numerous electrodes pasted on to my head, and wired up to the scanning machine. Probably for all the wrong reasons, but regardless of that… I didnt get to see myself until afterwards, but it looked wonderful, something akin to those old 1930’s style perm/curling machine, so yes, I definitely had the ‘wired up to be brainwashed’ look, even if the electrodes were really only scanning, not brainwashing, but anyway…
The first bit was standard enough, the looking in all directions stuff, followed by about 10 minutes just laying there with my eyes closely, imagining it was doing all sorts of evil things to my mind, but you cant have everything, sadly.
After that, first I did some deep breathing exercises, presumably to try and trigger something interesting in my brain? After recovering from that, I was then subjected to a stream of lights flashing on, and off for periods, both with eyes open, and shut, and the latter caused the sort of pattern you see on those hypnotic trance things. Sadly, even that didnt actually erase my mind, shame!
I gather there was nothing exciting in the results, which might have been down to having a good day, or a sign that I’m on about the right level of meds now, or possibly both. Results will go to the neurologist to decide what happens next. Well, in one sense at least. The sense of whether they want to repeat the test after a period of some sleep deprivation, as that would possibly annoy my brain more, and produce better results, before the MRI scan. Alternately, the MRI scan is now set for 3 weeks today, so we could go straight to that. The amusing thing there will be getting the earrings out of my ears, after, err, a large number of years, without removal. No idea on that one, but they will have to go by one means or another, for sure. Then I have to decide whether to get a pair of studs put back in, or not. I suspect the decision will depend on whether I might need follow up MRI’s, or not?
The other choice I’m facing soon relates to the transition issue. I can simply get the bits bobbed, get the right genitals aligned to the womb, and leave it at that, or I can do the whole thing, hormones, the full work. The main thing being that if I want to flash genuine cleavage, I’ll need to do the latter, but there is a lot involved. If all I wanted is my main psychological issue solved, the bits down below, it could be done a lot easier, and I could then wear clingy dresses, and swimsuits, with no issue anyway.
Twist my arm, real cleavage would be nice, but at my age, in truth, clearly up the main issue might be the easier option.
So now, await the revised brainwashing (EEG), or the MRI robotisation, which will it be? Got one fun job tomorrow regardless, ring for the result of the blood test, unless that too vanished back to the 1930’s, or some alien planet!
OK, video time, and the reason for the blog title. The electrodes sadly come off too easily, the paste used to fix them to my scalp, less so. But my hair is now washed, conditioned, and electricity free. So, a little Kylie. There is a very robot version of this video, but as always, when you want to find something, nowhere to be seen!
Oh, happy Independence Day, America.
Funny thing was, I’d planned to give this a miss for a few reasons. Firstly, I know people are going to want to hear what tomorrow is like for me, with the EEG Scan, and I try not to do too many blogs, as well as too few in a week. But then someone posted a picture, and well, I had to post it, and it could hardly wait a year, so…
Of course, the funny thing about my connections to the USA, so many of them lead to one state, Oklahoma! Of course its where Clara Johnson was born, in territory time, and not only that, but Kate has pointed out to me, its a highly likely target point for my Irish Great Grandparents at the time, if they’d gone west, instead of to England. Given that would have happened just before Clara was born only makes that even more ironic.
Sadly, Kate and I have agreed that even if I get permission to fly, post scans (which I will, if only epilepsy), I wont be going to Oklahoma this year. I think she’d rather have me nearer home, and with the better facilities in New England close by, and in truth, I dont blame her! But if Clara thinks she’s safe, there’s always next year, by which time hopefully things will be really stabilised!
I cant make plans until after the scans on what I will do, as a lot will depend on where, when, and how much surgery I got done, to solve all my issues. A dear friend (or 2) have made it very clear they’d love to find a way to get it done in the USA, and given some of the recent reports coming out about the NHS, who can blame them? But until I know whats the matter with my brain, no comment. But definitely need to get some bits bobbed somewhere in the near future, I’ve pledged for that, and in truth, it will be nice now to get it done.
Its also fascinating to think where I might be now, if my ancestors had gone west to ‘Oklahoma’? Or did one version of my life have that happen, produce Clara Johnson, and only in the other life did they come to England? I know, silly idea, but an interesting thought. Would I have followed Clara’s route, ended up in movies in Hollywood, would I have followed Kate’s route, to New England. Or might I be a happy housewife home in Oklahoma, with children, who knows?
Oh right, that photo, no I hadnt forgotten. Its a picture of another shy, demure blonde, who would never say boo to a goose. Yes, you know I’m joking I hope, because its Mae West, dressed as the Statue of Liberty. Would I love to wear this dress, you bet I would!
Maybe next year, somewhere in the USA, who knows, but I wouldnt put good money on it!
Right, the video. Its the obvious song, but its ironic about the way politicians pat themselves on the chest, and have this blasting out at rallies. Why, because its actually an Anti Vietnam song, and not deeply proud of what the USA did. But they just look at the song title, not the lyrics, and… God Bless America!
For any ‘snowflakes’ or similarly delicate people reading this, you might want to move on quickly, internal bits issues. All others duly warned, tale of the day.
So yes, I finally was here, the big day when I was going to get a clue about my fate in life. The ‘entertainment’ started early, as I was trying to convince my body to provide the required urine sample. My mixed up plumbing decided it didnt want to play ball, and in trying to push it out, I set off my occasional bowels issue ((blockage), and I just locked up completely for about 50 painful minutes, with nothing coming out either end, though both ends needed to, and I could feel it. Eventually I won on one front, then the sample bottle got filled rapidly an hour or so later, so…
One first today, the use of a blue disabled badge for me, in a parking space. Fine, it was Eric’s, but in truth, but for him having one, I’d probably need one now. Got weighed, 83 kg/ 183 lbs which is a bit higher than it was, but lets face it, I can hardly do much exercise in last 3 months, I’ve hardly got any mobility, but anyway… This does strictly make me slightly overweight by a few pounds, but nothing dramatic (just checked).
Then on to the doctor, and a discussion of things. Thankfully Ella was with me, as I literally remember nothing about any of my seizures, and she at least saw the last one, so was able to give details. The doctor then wanted to test my balance, by walking one foot literally in front of the other, but my balance is wrecked by my damaged knees, so it didnt get far!
The end results. my medication level has been doubled (or will be after transition week), but I was on lowest level up to now, so hopefully not a big thing. I’m also being booked in for an EEG test (to see if they can locate the issue), and then an MRI test (to see if I’ve got a brain. No, seriously, to see if its any more than epilepsy), which should happen over the next 4 weeks or so. Seems it might be related to a fall out of a loft 32 years ago, though not definitely, but it could kick in now, wow! No decision on freedom to fly until after MRI, which makes sense, but will be fine if just epilepsy, which lets hope it is, as crazy as that sounds!
I asked about work, he didnt seem as hot on the ‘never work again’ thing as some, but equally, he was talking about a year or so of recovery, and I am 61, and would then be 62, and would retire at 66, so… Besides which, my voice breaks down under stress, so could hardly do my current job, so I think it almost certainly is it, but again, lets see what the brain scan says. Famous last words… But seriously, given it all, and my lack of mobility, I think retirement on medical grounds is a certainty. In theory, I could do a non phone job, but it takes me a lot longer to do anything, so…nope!
I stated I was Intersex, but didnt ask questions about compatibility between the epilepsy pills, and female hormones. I’ll leave that for my own doctor, lol. But yes, if retired, and allowed, it is a pledge I made, lol.
That, pretty much was it. Collect my new prescription, collected some cash to get my hair done (coloured and cut) on way home. Yes, would love it done this way, but I suspect I will have to settle for modern methods
So no, seemingly I dont get the full robot bodysuit just yet, lol. But yes, I’m looking forward to the EEG, and MRI ‘messing around’ with my mind, all the same. 😉 Yeah, I wish! Mind, if anyone wants to provide me with one, fully interfacing or otherwise…?
Right, video time. What someone might be doing, when it comes to my brain, shortly?
Yes, the blog title is rather apt, as its all about mine! Its hard to believe now that just over 13 weeks ago (as clearly the Tuesday incident was first seizure, in hindsight), laugh for me was relatively normal for me, other than a busted back. The irony of that, and the more calamitous ones on the Friday was that I’ve had less literal pain from my back since then, but my mobility has gone to pieces, so I’m assuming that some connection between my brain, and my spine has got disrupted in some way? All the same, despite knowing it was going to be a while before I got to see an expert, due to the speed of things with the NHS, it was still a bit of a blow when I found out it wasnt going to happen to mid June, but yes, we’re almost there.
As, in fact I found out yesterday afternoon, when I was sat quietly on the settee, when the phone rang, which Eric answered. He did something with the dial (yes, its one of those retro phones, compatible with digital system to dial out, and stuff), and then handed me the speaker. It was some automated call from the appointment centre at the hospital, presumably to confirm my appointment a week later. Thing is, despite it doing the equivalent of dialling a 1, to say I was hear, it didnt pick up. Anyway, when it repeated the question to me, I did the same thing, with the same lack of effect. So the call cut off, presumably the equivalent of a ‘no answer’ or something.
I checked the number we were called from, but all I got was an automated voice saying that someone would call me within 24 hours as a repeat. Anyway, just over 24 hours later, no one had, so I tried the number on the appointment letter I got from the hospital, nearly 3 months ago! But it seems to talk to them, I needed a number that wasnt printed on my letter! So anyway, I got frustrated, tried to explain to him, and my voice disintegrated totally. Eventually he gave me a number for the actual hospital, but I couldnt have called them, my voice was blown by then. Yes, another reason I cant go back to work, clearly, one stressful call and my voice would be blown for hours! Not much good in a call centre!
As for next week, I cant deny I’m looking forward to the EEG, MRI and anything else they might throw at me that way for all the wrong reasons! Oh yes, weird things done to my brain, especially involving electrodes and chambers, cant wait! Yes, dont be surprised if I report that I imagined being brainwashed when the electrode cap was on me, and activated, for sure. As for what I might imagine being done to me, in a MRI tube, lets not consider! Sadly, the former is unlikely to brainwash me, and the latter turn me into a mindlessly obedient robot, but nothing’s perfect. Yes, I would love those, lets face it.
I try to wonder what they might find when they do the tests. Are they just going to decide its epilepsy (though the pills certainly didnt stop the later bout of seizures), or will it prove to be something more serious? Who knows, though there isnt a lot I can do, whatever it is. But I have to be honest, setting the steps to find out will be an absolute blessing, and might stop me worrying just how bad it is. The other blessing being, that once I know, I can work out when, or if I can do a few things I really need to sort out. Photo shoot, holiday planning, offering myself for mad scientist research? (I wish!)
I was tempted to ask a Psychic friend if she could tell me what my fate is, but firstly, I cant afford to call her (she’s in US), and secondly, is there a bit of me that really doesnt want to know? Mainly the former, I’m sure.
So no, I wont be there at the first day of Royal Ascot, dressed up in some posh hat and dress (wouldnt that be fun?), I’ll be at a hospital, in Huddersfield, awaiting my fate. Funny what a brain can do to you, lol.
Talking of which, the video. This song is slightly younger than me, but not much, its from 1965! Its why the film, and the song dont match, its a combined mix, thats all. Love, no idea what that is, but I now know how ‘funny’ brains can be!
No, hopefully not me going, literally, but yesterday, I took note that the countdown to my neurologist appointment (at long last) was down to 3 weeks to go. In a sense, I’m slightly nervous about what they might find, especially since the recent repeat bout of seizures, but at the same time, I’ll be so glad to know what it is, or at least, hopefully find out what the problem is. I’ll be honest, if its something that means my time is nearly up, then so be it, though that might leave me with one interesting decision to make, but more on that shortly. Of course, it might be that whatever it is, with the meds I’m already on, and maybe something else can keep it all under control, then great. But I must admit, the wait to find out has been pretty agonising, for sure.
I must admit, I knew what the NHS was like, and that means I’m not totally surprised that its taken 3 months from the initial seizures, to get them even looked into, let alone any action taken. Its supposedly free, but in truth, we pay for it with deductions from our wages, but at least we dont have to pay crazy sums to get things to happen, on top of that. Yes, USA, I’m looking at you again. Again, today, I’ve had a friend over there surprised at how long this is all taking for even the first step, and I had to smile. As I pointed out to him, if I had the money to pay for the neurologist, the MRI, the EEG, and heaven knows what else private patients might get thrown at them here, or that you, or your insurance company gets billed for, this would have been looked into, soon after the initial seizures. But it isnt, so…what will be, will be, and no, that isnt the video! I suppose that unless its something that is ‘bad’ by the time it get looks at, that wouldnt have been ‘bad’ in March, does it matter? Well, beyond my worry about it all, probably not.
But yes, lets face it, absolutely, I’m thoroughly looking forward to having my brain wired up to an EEG, and granted, the MRI will be an interesting experience, thats for sure. Fine, its not going to actually do anything interesting to my brain, but a girl can dream. Going to be fun getting my earrings out for the MRI, as they have been in for years, so removing them might be a challenge.
Given the number of medical people who have told me I wont be working again, I’m assuming something is faulty enough to make that a foregone conclusion, when checked over. I dont know if the fact if I’m only 5 years from retirement anyway plays a part in that, in that its not working the challenge, or whether it would be the same if it had happened at 31, and I doubt they will answer that! But yes, hopefully 3 weeks from now it will all be confirmed, and I can stop worrying about it. In truth, yes, the brain is ‘busted’, its not going to work normally again, of that I’m sure. Even on a good day, I cant talk well for long, and on a bad day, dont ask! Besides that, my mobility is now rubbish, about 1000 yards/metres on a good day is about it, and on a bad day, nearly 100, if I’m lucky! So walking for buses/to work, and doing strings of phone calls, no chance!
The other interesting thing over all this, is a pledge I made a while back, which I assumed I wouldnt be thinking about for at least another 5 years, but seemingly… I stated that once I retired, all things permitting, I’d complete transition, most notably getting my bits bobbed, girl style! Yes, I’ve already been reminded about this, lol. In truth, I have no idea that the hormones and other stuff I would need to do (including the surgery) will be compatible with what I will need to take for the brain, but yes, I plan to find out, once confirmed. Yes, I really will! As I said to someone today, it will be nice not to have to worry about what I wear after surgery, in the sense of concealing bits, and being able to flash boobage, because it will all be natural. No, I dont think latex will be in my wardrobe (sadly), but more clinging, and revealing dresses, just maybe…? 😉
But yes, whatever the news, whatever the decision, I’ll just be glad when I have it all checked out, and confirmed. Less than 3 weeks now, I hope!
OK, video time. Feeling wicked, as per the first half of the blog title. Yes, I know the quality isnt great, but its so rare to find Manfred Mann actually singing live, I thought, what the hell, and went with it. Its not hard to find a non live version on You Tube, if preferred.
One thing I’ve always tried to do, at any election, is vote. I just feel that regardless of who you support (or in the case of UK, plan to support tomorrow), if you dont vote, you have no right to complain about the outcome of the vote. I actually missed one earlier this month, the local council election, because I can barely walk (and thats being optimistic) more than a few hundred yards now, due to the fact that the brain, and mobility rarely both function well at the same time, due to the seizure stuff. Quite often one works, and the other doesnt, and I get the odd day where neither are in a going mood, and the very rare day when both work.
So, given that around here, only one party was ever going to win the vote (they did, comfortably), and the pain it would be to arrange someone to transport me to a voting station about 600 yards away, park to allow me to vote, and then collect me again, I didnt bother, no great issue.
Thing is, tomorrow is the vote that should have never happened, the EU Election, but it is. No, I’m not going to say which side I’m on, or who I’m planning to vote for, neutrality, and all that. But because this is a regional, proportional vote thing, my vote is a bit more important. So… Before anyone says anything, it was a bit late to arrange a postal vote after the seizures, and besides which, my brain really isnt up to challenges like that. If I get a negative result from the neurologist next month, as expected, then I probably will for the future, but this is sooner than that, so…
In the fairly unlikely event that my mobility is good tomorrow, I intend to walk up to the voting building, and cast my vote that way. Mind, if thats the case, the chance of my brain being up to the complex voting thing, we will see, lol? So what’s Plan B, you ask? Well, Eric has one of those mobility vehicles, and I’m going to give that a try, if needed. No, obviously I’ve never used one before, but he tells me its not that difficult to drive (famous last words), and as its not far…?
In truth, if they’re going away in the autumn for a few weeks, and I’m still here, I’m going to need some way of getting around, if I need to, and something like that is the best option locally, other than taxis, which is a bit expensive! The last time I drove anything? Well, I was in my 20’s, and now I’m 61, so… I’d stay off the streets around here tomorrow, lol, as I dont know yet when I’m going out. Funny thing is, I’m out again Friday, to the surgery for blood tests, and to collect prescriptions, but wisely planning to do that by taxi, as a fair bit further, and I suspect I’ll need more practice before doing that distance! But weather permitting, I will get there to vote, thats for sure.
Right, video time. When you grow up on Glam Rock, and know this is 46 years old, you know you’re old, lets face it. Oh, but I’m a ‘Sweet’ old lady, lol. Or maybe I’m a…?