This is the Message Centre for 2legs - Hey, babe, take a walk on the wild side...

rare-disease day...

Post 1

2legs - Hey, babe, take a walk on the wild side...

Apparently it is, today. smiley - alienfrownsmiley - weird I figure just about every day now, must be a ' 'particular' 'special' day.... eat welsh rarebit day, bring your goat to work day, St Niat's day etc., etc., smiley - ermsmiley - alienfrownsmiley - weird apparently I've got a rare-disease smiley - yikes probably several if I could be bothered to count them all smiley - laugh randomly notice I had a test, at hospital at the start of Jan, that is flagged up online in my account, as not normal, and requiring Dr app. smiley - shrug good job that this hasn't been picked up on I guess smiley - alienfrown Its to do with the bone density scan, apparently I do* have ostioporosis in my hip/femer , but only ostiopenia in my spine smiley - alienfrown which entirely contradicts what the consultant at hospital told me... smiley - shrug anyhow, now the consultant morons at hospital have changed their mind, according to the last letter I got anyhow, and they've decided to treat the bone density loss, which is nice, I guess. smiley - weird My consultant is so incompetant that neither of the three consultants I see actually, is able to do multiplication by 4, or division by 4, of such mamoth complex sums, as 3 X 4, or 5 X 4, or 20 divided by 4, and the consultant apparently doesn't know the side effects of the medication they've put me on smiley - laughsmiley - shrug Oh well, happy rare disease day.


rare-disease day...

Post 2

Pierre de la Mer ~ sometimes slightly worried but never panicking ~

I wish our diseases were rarer. As in non existing at all.

But since this is not the case I will instead celebrate that exactly four years ago - 28 February 2013 - I had my last working day. Ever!

Coincidentally this was also true for my compatriot Joseph Ratzinger.

You may remember him better as Pope Benedict smiley - winkeye

smiley - pirate


rare-disease day...

Post 3

2legs - Hey, babe, take a walk on the wild side...

you are the pope Benidict, and I clame my five pound reward! smiley - sillysmiley - biggrin

slightly odd evening tonight smiley - alienfrown

Went out to an 'interfaith' LGBT meeting, at a sinagog.. (sp?) and.... no one turned up... the building was closed... in darkness.... me and W went, and one other person was there, looking round the building and looking confused... we established we'd all gone there for the same reason, and standing in the rain, looking at the empty, quiet building, figured out somethign had gone wrong... smiley - doh

So we did the only obvious thing; we went to the neareest pub, which was rather good pub actually, and had a drink, listening to the Jazz band who was playing smiley - coolsmiley - musicalnotesmiley - ale with me, a blind transvestite, William, and the other person, a transitioning female to Male smiley - magic a perfectly weird association of three individuals, smiley - alesmiley - cidersmiley - oj and talked of religion, beer, jazz, food, rowing, cycling and publishing, plus Drs and of the lore and legal matters, and all kinds of things basically smiley - zen - ended up bieng a smashing evening really smiley - biggrinsmiley - cool


rare-disease day...

Post 4

Pierre de la Mer ~ sometimes slightly worried but never panicking ~

What better place to have an interfaith LGBT meeting than a sin-a-go-go smiley - silly

Sounds like a nice evening in spite of the holy house being closed. I always preferred to sit in a pub and think about the church than the other way around smiley - zen

smiley - pirate


rare-disease day...

Post 5

2legs - Hey, babe, take a walk on the wild side...

exactly... suited me too... though I was kinda looking forward to going into a singagog, not been in one before.... loats of Christian Churchers, cathedrials, mediavial cloisters, and mosques, but not a sinagog... smiley - weird

feel oddly very ill today, but nothing I can define or put my finger on smiley - erm and no, not hangover or anything like that smiley - laugh just extreme crushing fatigue, I think, or something very much like it smiley - alienfrown

had tons of mushrooms for breakfast, with a couple of eggs, and some toast, circa 400 calories, then a yogart and a bananna a little while ago, for a late lunch, about 200 calories I think smiley - zen

off to hospital soon, for this stupid NHS 'nutrition and fitness'/Weightloss thing... today's topic they'll murder, for the 'nutrition' side of it... talking about takeaway food... as I don't eat takeaway food more than about four times a year, this will be smiley - zzz I assume, and hit at a very low level smiley - laughsmiley - doh

the GP surgery phoned back smiley - yikes shocking itself, more shocking, or less, depending on one's expectations , they didn't quite answer the question I had asked, but apprently a Dr, who's name I don't recognise and who I have never seen, says 'I can carry on taking the diuretics at the dose I'm on', - no clue as to how long for, or if they're automatically adding the med to my repeat prescriptions or not, and no desire of anyone to look at me and see if they're doing any good or not. also, no more blood work requested; I always kind of assumed 'monitoring' ment more than a one off blood test, and therefore as according to the consultants origional letter, I'd be getting bloods drawn every coupl e of weeks, to check my sodium and potassium; both are* 'normal', but my sodium is right at the low end of normal now, and the last time it went off below normal I had a brain hemoridge as a result. smiley - shrug I'm juust about past caring honestly, I can't be dealing with such total moronic behavior and incorrect thinking by each and every doctor I see, and consultant, and, now, even, it seems, the ignorance and incompetance of Drs I've not seen is to adversely affect me as well. smiley - shrugIf they don't start acting like grown-ups with working brains, soon, I think I'll just have to entirely drop out of t treatment, with the exception of the growth hormone and testosteorne. err. assuming they're still continueing with testosterone, no one has given me an appointment for my next injection, or indeed for another blood test to monitor levels, which they said they were doing now, but appear to have forgotten about. I'm not sure the administration of the hospital is up to its job, I'm pretty sure no one actually even looks at my blood results, until I have an clinic app, which is reassuringly incompetant of them, too.


rare-disease day...

Post 6

ITIWBS

B'fast this morning, pancakes of the simplest kind, wheat flour and water, cooked without oil on a well seasoned skillet, drowned in well caramelized cinnamon syrup.

Supper, I had to make a 20 mile late evening run to town for a tire repair kit since one of my tires has a slow leak, so rather than cooking, got a takeout, a couple of jumbo shrimp tacos in wheat flour tortillas with minced cabbage and tomatos and a sliced key lime, a large order of french fries and a strawberry milkshake.


rare-disease day...

Post 7

2legs - Hey, babe, take a walk on the wild side...

breakfast today was a large, 125 Gram flat mushroom, grilled, and two rashers of back smoked bacon, grilled smiley - drool didn't bother with lunch as I wasn't hungry and instead, went out for a walk with William... for about an hour and a half, right ou of the city to a nearby little village, via a route besides a la lake in an old quarry pit smiley - magic - walked all the way out there, then got the bus back as it was getting late by then... smiley - cool dinner was smoked haddock, grilled, fresh baby leaf spinich, long whole green beans, and baby new potatos smiley - drool so I've eaten aboug 600 caloires all day smiley - laugh and don't feel hungry smiley - weird - may end up being topped up though, with smiley - ale later if we can be bothered to go walk out again smiley - zen


rare-disease day...

Post 8

ITIWBS

Breakfast, the usual coffee cappucino, 4 inch chocolate muffin, banana.smiley - smiley Had a little more appetite than usual.

Spent most of the day getting caught up on my sleep.

Supper, double salami sandwich on toasted dark deli rye with mayo and spanish red onion slices, quartered, large roma tomato and peeled avocado, both quartered lengthwise and cut into bite sized bits, chocolate muffin and hot cocoa.

Time for morning coffee.smiley - biggrin


rare-disease day...

Post 9

2legs - Hey, babe, take a walk on the wild side...

Weighed myself again last night smiley - wow lost another 1 KG smiley - coolsmiley - boingsmiley - magic I might be squeezing back into my 30" waist skinny fit levis quicker than I thought..... (fitting back into them is the main aim of this weight loss - a nurse endocrinology, who could certainly never fit into a pair of skinny fit anything, mentioned that I'd never be able to fit back into them, due to the hormonal abnormalities and steroids I'm on... - sounded a wee-bit too much like a challange to me, so... I have to get back into those jeans, which I was wearing back at the start of 2015, and a few monhts into chemotherapy, and the steroid induced weight gain period....) smiley - zensmiley - magic Hope to hear back from gym early next week, so I can get a couple sessions in there next week, in addition to the circuit training at the NHS weight loss class thing... smiley - zensmiley - diva

not so much walking today, just half an hour into and out of town, to pick up a few things, and another walk later, about 40 minutes round trip , to the pub, for an LGBT event.... - its alright I put the beer calories into my calory counter, before I even had breakfast today smiley - zen breakfast was only 204 calories; bacon and mushrooms, grilled, and dinner looks like being about 500 so I should have ample beer calories smiley - zen (I don't normally do lunch ) smiley - zen


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