splodgenoodles: (Default)
I called a locum GP on Sunday because I was really quite unwell.

He took my temperature. I asked him if I had a temperature. He said no.

I have just spoken to my regular GP, who says that according to him, my temperature was quite high. (38+quite a bit, I forget what she said). In my situation, that *is* significant.

She doesn't normally do home visits, but she's coming round to listen to my chest, just to be on the safe side, and to give me a script for better antibiotics. (He was in too much of a hurry to let me check my records to tell him which antiobiotics seem to work for me best with fewest side effects).

I had noticed he didn't ask anything about my prior medical history, which begs the question of why he thought I would have called in the first place. (If I had no significant medical history, I'd hardly call a doctor for a cold).

I think I'm going to send some feedback to the locum service about this.
splodgenoodles: (Default)
I had to cut short my fortnightly shopping trip. I had a funny turn. And it was quite unexpected. And it freaked my carer right out. Sudden loss of decision making capacity and full on sensory overload.

Haven't had that happen for a long time.

I came good enough to get a few things, but we came home early and I'll have to do the rest on Monday with my other carer.

Potential TMI )

Unless I do actually establish that I've got a gastric bug, it looks like another therapeutic option bites the dust. I guess it will become apparent over the next couple of days.
splodgenoodles: (Default)
She seems nice enough, and happy to take over from my old one (who's a bit too far away to see easily.)

more )

I had a nice zone-out session in the chapel. I tend to haunt hospital chapels as they are an oasis of calm in the world, a good pick-me-up.

~~~

But yowsa, I had another bad sleep last night and everything's sore. Really relieved there's nothing timetabled for the next few days as my equilibrium badly needs equilibriuming.
splodgenoodles: (Penelope intro)
1. Oh crud. I've got a message to call the dermatologist for biopsy results. The dermatologist's rang me with biopsy results and while there's nothing serious, I need to pop back to get some things frozen lest they take over my face.

On the plus side, today is overcast and rainy, so the risk of further sun damage is relatively low, although I should perhaps go hide in a cupboard, just to be on the safe side.

2. Not going on Seroquel - I emailed my brain care specialist about my last trial of this drug and she replied to compliment me on my record keeping and agree that trying it again was probably a bad idea. Will just increase the Lexapro instead.

3. Calming down. Panic easing to moments here and there, interspersed with spells of feeling quite okay.

4. It's not medical, but there's a large box with my name on it at a not-very-close Post Office. I'm hoping it's small enough to get home by Bazza. On the plus side, I expect it's the goodies I ordered from the Met Museum sale when I was foolishly overspending on Boxing Day. I didn't answer the door when the postie rang because a) I never do because I'm always in bed and grumpy about being disturbed, and b) they always just leave things by the door, but I suppose they quite rightly didn't do so on account of the rain I didn't realise we were having. It's unlikely I shall Mend My Ways though, because I am very much not a morning person.

5. A salesboy from an energy company rang me yesterday and I actually conversed with him, making the fatal mistake of agreeing he could call me back today when I'd thought it over and looking at some stuff online, since I've been meaning to check energy deals anyway. Alas, I am now more confused than ever and planning to not answer any private calls this afternoon. This isn't really medical either, is it? Utcunque, it does impact on my sanity so maybe it is.

6. Yesterday my GP told me that she thinks grief gets harder to deal with as you age, because you are so much more aware of your own mortality (and I think she's in her 60s, so I suppose she'd know). Then we agreed that perhaps that was an observation she need not have shared. But she did admire my green clogs.
splodgenoodles: (Sisyphus)
Today I saw an ENT specialist (Ear, Nose and Throat). I'm off for a CT scan next week, he suspects I have fungus in my sinuses.

He said it's a growing problem, either from antiobiotics in the food chain or just that no one really paid attention to the problem in the past. My suppressed immune system will, however, probably be contributing to the problem - not to bacterial infections, but to fungal ones.

If fungus is confirmed, he said I will be able to harvest and sell so long as I don't claim my product is organic. (What with all those food-chain transmitted antibiotics).

I might have imagined that last bit. It's possible that what he said was that I'll need sinus surgery, in which the fungus will be washed out with a terrifyingly powerful, repurposed fire hose.

It's also possible that I imagined that last bit, and that he didn't mention a repurposed fire hose at all. But he did mention that he has had the same surgery I'll probably be getting and that he's still here, so it can't be all that bad.

Actually, I definitely imagined that last bit - he only said he'd had the surgery itself. I'm just assuming that it didn't kill him and therefore can't be all that bad.
splodgenoodles: (Lock stock stoner eyes)
Today's home helper and I bonded over Westerns.

I'm sneezing and have a streaming nose. One of those sinus rinse things reduced the symptoms for a whole minute or two, I've also taken a Loratadine/Claratyne.

What do they grow here in [location redacted]?

Anyhoo. Now I have to go and have a basal cell carcinoma removed from the top of my head. (Not because of the hayfever, just because I made this appointment weeks ago).

I hope I don't sneeze at a bad moment.

And I hope they don't shave my head. It's right on the top, so if they do I'll have a tonsure and that's not a good look on anyone.

I decided not to ask in advance about whether they would have to shave a patch. I figured I have to have it done regardless, so there was no point in knowing in advance and getting worked up about it. I'm sure I've got a beanie somewhere in the house.

Postscript:

That was quick, I'm back. Nine stitches. When she hoiked the skin together at the top of my head, I could feel it pulling back my face - I guess this is what a brow lift feels like. Apparently I'm going to have a headache soon.

I've been told not to do anything strenuous today, like running or serious excercise, let's hope I remember that. (Also, keep it dry for 48 hours, then wash gently and dry thoroughly with a hair dryer, go back Friday, stitches out in a fortnight).

And I got to see it afterwards, floating in a jar. It was gross. So gross that if anyone were to be disturbed by the sight of my nine stitches, they need only google "basal cell carcinoma" to see what got removed.

While I couldn't call my recent dermatological adventures traumatic, I'm really looking forward to them being over.
splodgenoodles: (bobthebuilder)
Ah me.

The daily grind. Yes, today it's all about explaining to people that you need help - their help - and maybe they can do this even though they've never done it before, because it's really quite easy.

It's a reasonable request, made in a pleasant and respectful manner.

The trouble is, it's tricky. Get it even slightly wrong and your request will go no further. Gatekeepers are called that for a reason. The reason being that they are the doorbitches of the medical world. So calling them "fabulous nobodies", is hardly appropriate or true, but calling them "grumpy nobodies", "misanthropic nobodies" or just "fucking annoy9ing nobodies" is very, very tempting, but not very nice. It would also display total lack of empathy on my part, a failing that I feel I should keep under wraps when I want to be uber critical.

I have observed that the most poisonous criticism always carries the stench of apparent empathy.

In case you are wondering, I am trying to arrange a home visiting pathology nurse. Pathology labs have a daily round of home visits to sickies, crips and oldies. It's not a problem.

However, they need your doctor to make the booking.

At one point in the past I made an arrangement directly with a pathology lab for home visits on *my* request, done via a nice letter and several phone calls up the heirachy. However, one day after a long time during which I'd not needed home visits, I rang to find they had updated their system and had new staff to match, who weren't going to allow me to question the rules or speak to anyone up the food chain. My special arrangement had disappeared and that was that. That was fine, because I had a GP that was really prompt and okay about these things so I didn't bother setting it all up again. But of course, now I'm not there and don't have that GP.

The specialist that requires the tests is unavailable and her staff have said they've never done any such arrangement with a path lab, so they say it's up to my new GP.

My GP's receptionist is oh fuckit, just bloody stupid easily confused and always in a hurry. After a few mintues that confused us both, she said she would pass on a message to the new GP for me, which was as good as I could get. God knows what the message actually is. I'm hoping it's to call me and find out.

This is the receptionist who most recently was unable to work out how to send an email with an attachment. It's long story and really not interesting, but I think the brief version paints an adequate picture.

So I am not entirely optimistic.



[Memo to self: when receptionist says "is it because you can't walk?" just say yes. It's not the occasion to explain that you can, but not much, that you can, but you have a fatigue problem that strictly speaking doesn't mean you can't walk, per se, but that you have a string of problems that makes going *out* for this a serious problem in itself...
Yes, she is probably daft enough that one day she will see you standing up in her waiting room and say "hey you CAN walk!" but maybe you should cross that Bridge Of Stupid when you come to it.]
splodgenoodles: (bobthebuilder)
Today was a bit of a day. But in the end, all a bit of anti-climax, so you can move right along if you want, I won't hold it against you.

Remember the Phossy Jaw, real proper name: Osteonecrosis Of The Jaw?

It arced up today. Well, I'd felt a few odd tweaks in the last few days, but nothing serious. Today at about 10AM I woke up thinking it was definitely sore, and by noon it was at endone-level sore, which struck me as definitely not a good thing.

I rang the Dental Hospital, who didn't exactly encourage me to go in because they only do pain relief on weekends, you wait for hours, and the phone person didn't seem to know anything about ONJ. Then I rang the fabulous [livejournal.com profile] mrsbrown, problem solver to the stars and, I was hoping, chauffeur to the noodle. Which she was, both things!

MrsB suggested the Afred Hospital instead which of course made a million times more sense since strictly speaking, the problem is not dental so much as bone pathology and with a zillion underlying medical problems, the Dental Hospital would probably have sent me there anyway. Actually, she didn't say any of that, she just suggestd I try them and see since it was medical so I did and she was right.

Then I had to take a second endone.

And she got to spend her ?second last? day off sitting around with me in Emergency.

We got to quietly scoff at the guy whining about getting a local anasthetic and some stitches, while we were also watching a pool of blood develop under his bed. And then she told me about OH DEAR GOD NO ) after giving birth, which I think she told me about before but I blocked it. Anyway, we agreed this poor bugger was a wus, or maybe a woos, and that it would be really nice if someone mopped the blood off the floor.

Apart from that it was quite dull really. She did some sewing, I did some knitting. We ate sushi. Eventually they did a CT scan of the jaw. In the meanwhile, the pain did reduce to almost nil and in fact the biggest problem was a nagging headache of the sort you get when you haven't eaten enough, or drunk enough water, or had enough caffeine, and there's not really anywhere comfy to sit or lie and there's a fluro light, and you are sitting in an emergency department.

The CT scan doesn't show anything, the registrar said if there's anything going on it will become obvious in time. Bone can take a while to show things. No point scanning or x-raying for another fortnight, it will take that long for change to be noticeable.

And that maybe it just won't happen again. Fingers crossed.

So. Pain relief as needed, I suppose I can go back if it gets really stupid. If it sticks around, call the dental surgeon who diagnosed it. I'm planning to call him anyway, since many months ago he told me to get in touch sooner rather than later if it gave me any grief. I feel I should at least tell him about this.

I am very glad I went in. I was really worried and it was very sore. I am at present really paranoid about anything involving bones, so even if I'd stayed home and the pain had subsided, I'd have still been nervous and would be nervous now about all the what-ifs. Which is funny since it is still a case of 'wait and see', but somehow having had things checked out makes me feel more calm about the process. It's a lot better than my fear, which was that I'd be in for some ghastly emergency procedure ASAP and all that.

I am totally in awe, and very appreciative of, MrsB and her excellent hospital-waiting skills and her generosity in using those skills.

I'm very glad that it has turned out to be an anti-climax. The possibilities running through my head were not great.

Anyhoo, that was today. I have had the last of some cold Thai food for dinner, and am now drinking copious quantities of water to help wash away this headache. Risked a tiny amount of coffee because when you're this caffeine deprived and headachey, it won't keep you awakeI really wanted some.

Am now just quietly regrouping. Today is pretty much over and that's that. Looking forward to tomorrow, hoping for a good night's sleep first.
splodgenoodles: (Lock stock stoner eyes)
Getting a new belt drive for [livejournal.com profile] tenbears' turntable is definitely better than a poke in the eye with a pointed stick.


And having had both happen today, I should bloody know.

~~~~

It's okay, the eyepokery was medically mandated and supervised and the new belt drive is belt driving as it should, so I am now kicking back to Alladin Sane. Next stop will be something else with enourmous cred, probably The Clash or something. Maybe even Jimmy And The Boys (five people reading this are nodding in recognition and now want to have sex with me, the rest of you are just feeling like you should).

I might eventually get to Mel And Kim's 12" Respectable, but I'm sure as hell not going to blog that.
splodgenoodles: (Lock stock stoner eyes)
Getting a new belt drive for [livejournal.com profile] tenbears' turntable is definitely better than a poke in the eye with a pointed stick.


And having had both happen today, I should bloody know.

~~~~

It's okay, the eyepokery was medically mandated and supervised and the new belt drive is belt driving as it should, so I am now kicking back to Alladin Sane. Next stop will be something else with enourmous cred, probably The Clash or something. Maybe even Jimmy And The Boys (five people reading this are nodding in recognition and now want to have sex with me, the rest of you are just feeling like you should).

I might eventually get to Mel And Kim's 12" Respectable, but I'm sure as hell not going to blog that.
splodgenoodles: (Default)
We just popped out for coffee and cake. As it turns out, I had a cup of tea and we both had savoury quiche or maybe pie, but the principle is the same.

10B's work day had proven to be a washout and although he has non-work things to do, I guess I've also been feeling we need to mix things up a bit round here, especially when I think I *can* manage something. So for a little while today we sat in a place other than home, with other people shambling by around us. It was nice and as per usual I find myself thinking we should do this sort of thing more. And we probably could. It may cost me the occasional trip with 10B to do the weekly shopping, but I think I'd prefer this over the supermarket.

~~~

At the moment I'm feeling particularly frustrated by my lack of spoons. There are a few things that would probably give me *more* spoons if I could actually manage doing them but I can't! (Orthotics and a sleep apnoea splint are two things that spring to mind). At the moment things are still too unpredicable and my bad days are simply too bad, so they keep getting put off.

*grumps*

I think remedial action may have to be taken on this front: more carer support and better planning either side of the appointment that I've felt the need to have in recent times.

I have one outside appointment left this week - to that brain-care specialist I wrote about yesterday. My ambivalence is not helped by my feeling that right now, I'd rather be either tending to other medical matters or simply resting up. Seeing him *may* pay off, which is why I am going, but I'm going to be really peeved if it doesn't.

It is way past time for healthcare professionals to get a better understanding of "fatigue". Or maybe it's way past time to get rid of the word altogether. It includes experiences that are not only widely variable, but mutually exclusive and rarely explored or understood by anyone except people who are crippled by those experiences. Everyone else assumes a level of understanding and experience that they simply don't have.
splodgenoodles: (Default)
We just popped out for coffee and cake. As it turns out, I had a cup of tea and we both had savoury quiche or maybe pie, but the principle is the same.

10B's work day had proven to be a washout and although he has non-work things to do, I guess I've also been feeling we need to mix things up a bit round here, especially when I think I *can* manage something. So for a little while today we sat in a place other than home, with other people shambling by around us. It was nice and as per usual I find myself thinking we should do this sort of thing more. And we probably could. It may cost me the occasional trip with 10B to do the weekly shopping, but I think I'd prefer this over the supermarket.

~~~

At the moment I'm feeling particularly frustrated by my lack of spoons. There are a few things that would probably give me *more* spoons if I could actually manage doing them but I can't! (Orthotics and a sleep apnoea splint are two things that spring to mind). At the moment things are still too unpredicable and my bad days are simply too bad, so they keep getting put off.

*grumps*

I think remedial action may have to be taken on this front: more carer support and better planning either side of the appointment that I've felt the need to have in recent times.

I have one outside appointment left this week - to that brain-care specialist I wrote about yesterday. My ambivalence is not helped by my feeling that right now, I'd rather be either tending to other medical matters or simply resting up. Seeing him *may* pay off, which is why I am going, but I'm going to be really peeved if it doesn't.

It is way past time for healthcare professionals to get a better understanding of "fatigue". Or maybe it's way past time to get rid of the word altogether. It includes experiences that are not only widely variable, but mutually exclusive and rarely explored or understood by anyone except people who are crippled by those experiences. Everyone else assumes a level of understanding and experience that they simply don't have.
splodgenoodles: (Default)
Today I had that eye procedure done. No worries; all good.

No pain or even a glimpse of scary looking instruments, and it didn't take long at all.

Am torn between saying "well that was a bit of an anti-climax really" or giving in to the a part of me that would still like to scream "OW MY FUCKING EYE!1!!!" just on principle.


I still think I'm a brave banana for not running away though. They were running behind schedule so I had plenty of time to think about it.
splodgenoodles: (Default)
Today I had that eye procedure done. No worries; all good.

No pain or even a glimpse of scary looking instruments, and it didn't take long at all.

Am torn between saying "well that was a bit of an anti-climax really" or giving in to the a part of me that would still like to scream "OW MY FUCKING EYE!1!!!" just on principle.


I still think I'm a brave banana for not running away though. They were running behind schedule so I had plenty of time to think about it.
splodgenoodles: (Lady Penelope's car.)
We just walked around the block. I am so unfit. Hard for [livejournal.com profile] tenbears too, but only because he's not used to shambling. He seemed to have trouble knowing where to put his feet because his legs weren't moving far enough.

It kills me that going round the block is such a challenge for me. And that I'm secretly hoping that maybe someday soon I'll be able to do such a walk a couple of times a week with no payback. (Actually, what really kills me is that I assume that being well enough to do that would mean I'd have to get a job, pronto, and I don't feel quite ready...when really, being well enough to walk round the block three times a week hardly equates to being well enough to go to work. Logically speaking, I'm sure I've got a little bit more time before I need to buy an interview outfit. Like maybe, forever.)

~~~

And I've done another Scary Thing, go me. This was made easier when the process of getting it done became so damned fiddly that I wasn't so much anxious about the whole metathinginess of the activity as bored and pissed off and just wanting the fucking thing finished, FFS.

So now it's done.

~~~

Got an email today to tell me that I am not fructose or lactose intolerant, hurrah! Pardon me while I jump into a bath full of CAKE AND WHIPPED CREAM. (Cake containing wheat flour, you see, and wheat apparently being a problem in the fructose thing, believe it or not. Besides, jumping into a bath full of fruit and whipped cream just wouldn't have the same appeal, would it? Cake is much nicer, fruit is dull and unsexy).

~~~

But for those of you who wish I was dead right now (that'll be the folk currently munching on rice cakes and saying they're quite nice once you get used to them to anyone who'll listen), you'll be pleased to know that my cholesterol is still too high and I have to go on medication for it. My attempts to lower it through diet alone (ie-easing up on the cheese and fatty foods - in particular DUCK) only resulted in the levels of good cholesterol going down and the bad cholesterol going up slightly.

I take this as a sign that I should go back to what I was doing with the cheese and fatty foods - in particular DUCK. So if anyone wants me over the next week or so, look for me anywhere that does a nice yum cha.

~~~
splodgenoodles: (Lady Penelope's car.)
We just walked around the block. I am so unfit. Hard for [livejournal.com profile] tenbears too, but only because he's not used to shambling. He seemed to have trouble knowing where to put his feet because his legs weren't moving far enough.

It kills me that going round the block is such a challenge for me. And that I'm secretly hoping that maybe someday soon I'll be able to do such a walk a couple of times a week with no payback. (Actually, what really kills me is that I assume that being well enough to do that would mean I'd have to get a job, pronto, and I don't feel quite ready...when really, being well enough to walk round the block three times a week hardly equates to being well enough to go to work. Logically speaking, I'm sure I've got a little bit more time before I need to buy an interview outfit. Like maybe, forever.)

~~~

And I've done another Scary Thing, go me. This was made easier when the process of getting it done became so damned fiddly that I wasn't so much anxious about the whole metathinginess of the activity as bored and pissed off and just wanting the fucking thing finished, FFS.

So now it's done.

~~~

Got an email today to tell me that I am not fructose or lactose intolerant, hurrah! Pardon me while I jump into a bath full of CAKE AND WHIPPED CREAM. (Cake containing wheat flour, you see, and wheat apparently being a problem in the fructose thing, believe it or not. Besides, jumping into a bath full of fruit and whipped cream just wouldn't have the same appeal, would it? Cake is much nicer, fruit is dull and unsexy).

~~~

But for those of you who wish I was dead right now (that'll be the folk currently munching on rice cakes and saying they're quite nice once you get used to them to anyone who'll listen), you'll be pleased to know that my cholesterol is still too high and I have to go on medication for it. My attempts to lower it through diet alone (ie-easing up on the cheese and fatty foods - in particular DUCK) only resulted in the levels of good cholesterol going down and the bad cholesterol going up slightly.

I take this as a sign that I should go back to what I was doing with the cheese and fatty foods - in particular DUCK. So if anyone wants me over the next week or so, look for me anywhere that does a nice yum cha.

~~~

CFS Link.

Oct. 23rd, 2009 11:26 pm
splodgenoodles: (Default)
Hilary Johnston's take on XMRV. She certainly makes clear the effect of the political stuff on human suffering pretty clear.

(Thanks [livejournal.com profile] braunie)

Like most of us, as far as XMRV goes, at this point I am 'watching with interest'.

CFS Link.

Oct. 23rd, 2009 11:26 pm
splodgenoodles: (Default)
Hilary Johnston's take on XMRV. She certainly makes clear the effect of the political stuff on human suffering pretty clear.

(Thanks [livejournal.com profile] braunie)

Like most of us, as far as XMRV goes, at this point I am 'watching with interest'.
splodgenoodles: (Default)
Tired and frazzled and probably pre-menstrual (at least I hope so, because I'd like this to end soon please).

Really sick of dealing with the crap I have to keep dealing with. Medical, social and emotional.

Went and had my first methotrexate injection today. Learnt the procedure for self-administration, it's all quite simple.

I may feel queasy tomorrow.

But wait, there's more. )
splodgenoodles: (Default)
Tired and frazzled and probably pre-menstrual (at least I hope so, because I'd like this to end soon please).

Really sick of dealing with the crap I have to keep dealing with. Medical, social and emotional.

Went and had my first methotrexate injection today. Learnt the procedure for self-administration, it's all quite simple.

I may feel queasy tomorrow.

But wait, there's more. )

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