h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Two deliverys today.

Well, first was a TXT telling us the toaster, I bought yesterday, was at the corner shop up the road, ready for collection, W went and got that.

Shiney purple toaster! - with slots so small that most bread won't fit in. What the is it with toasters thesedays? is it really too much to ask that they design them to forfill their one and only function, accepting a slice, or two slices of toast, and then toasting it/them? apparently so. small bread only from now on then. - mind, it is purple though and it'll stay nice and shiney and clean if I just carry on using the grill instead

Second delivery.

ahh. right. OK. one massive box, one smaller box.

And, usefully, the patients handbook/guide, was inside the larger box; in which it says the delivery person will decant the appropiate bits of the contents into our fridge. which, of course he didn't. - box contained;

A massive inner box of several inch thick polystyrine..... two large lumps of double blocks of ice in polythene, and two large polythene things, full of very cold water; but flesible so they could contain; three small long boxes.... about toothpaste box size, well, a wee bit bigger, each contianing a months supply of human growth hormone.... so close to a thousand pounds worth of meds

That big box also contained.... a little box of of plasters and a large bag of cotton wool things...

The smaller box contained.....

my sharp's bin! no needles.... no injection device (I assume the nurse brings those, so one can't start injecting before recieving training in how to do so).

oh, and also in one of the boxes, a 'storage box', plastic, and looks like it came from pound land - nice size for putting grated cheese in actually...

Seems any travel is going to be virtually impossible from now on, the HGH needs to be between 2 and 8 centigrade.... so BoB knows what we're going to do when we have to vacate the house whilst the bathroom is re-fitted soon...

As the delivery bloke didn't do his job and put it into the fridge for us, we've now got more packing than will fit in our bin.

Keeping the packing, the nurse can take that away when she comes

Really not looking forward to daily injections, not really anything to do with the needles or actually injecting, that doesn't bother me at all, now I've so little sensation of my own body etc, but just the restriction it means in my life. - one entire side at the bottom of the fridge, the big veg compartment is now entirely full of drugs/meds.... several boxes of the two types of eye drops (I still can't produce any tears/water from my eyes). Hydrocortisone (so I don't take them anmore, but have a months supply there that was spare when I switched steroids), levothyroxin (thyroid hormone), Prednisolone (steroids replacing the HC), and now the HGH (genatrophin I think its called (brand name)). melatonin, (so I'm not taking it at the moment, but have some left), and... probably other stuff too... oh, and its actually two boxes of levothyroxin, one of 25 McG, one of 50 McG, and at any one time I try keep a good supply of the pred in, as I may need to double or tripple my daily dose if suffering a illness alongisde.... so that is useually 6 boxes of the prednisolone, and often more wen I pick up the new supply for the month, and still have some of the remaining ones leftover to ensure continuity of supply - seriously considering getting a second fridge, just for the drugs and stuff... and maybe for beer too

slept last night. reallly well; at least four hours maybe five, but woke at 7.30 to be up in time for the delivery, which didn't happen until midday, of course.

Woke full of energy, feeling fine, no muscle pain, no headache, no cognitive blurring, no dizzy, no light headeness, etc., etc., - all of which returned soon after I took the steroids. pain again. muscle weakness, light headed, distant, disaassociated, disembodied, unable to correctly rpcess sensory signals, like sound, touch, etc, anxiety, paranoia, cognition problems, muscle weakness, pain, cramp, slight nausea, tiredness fatigue, and general feeling utterly c........ the drugs are slowely killling me... Oh well... at least the testosterone injection is Monday and I can get relief from the pain for a few weeks at least and feel a bit more inside my own body again for a bit, etc... and get some lifing of fatigue and energy levels etc... Might E-mail a copy of my 'diary' for the past err... however many days it is since I started retaking levothyroxin, to the nurse who seems to be taking an interest in it, ATM (the HGH nurse), err, not this diary on Hootoo, the private one, with ... all the horrible stuff in, no t this happy go lucky version online. may try go back to bed for the rest of the day, until its dinner and then pub time. Alcohol aleviates most of the symptoms, and lets me sleep. even if they all return again as soon as I take the meds in the morning, the effects wear off a bit by about 9 PM in time for the pub anhow, when I start waking up in time just for bed. now... where on earth are we going to keep the sharp's bin, and all the other bits that don't belong in the fridge I need a medical room built on to the house

For travelling with your injection supplies... is it possible the manufacturer might be able to help you out? I have an injection I take bi-weekly, but at least once my date has fallen during a planned trip. The manufacturer actually makes a travel kit for my supplies that will keep it cold in transit, all in a nice case to keep everything together and it was free. I don't know if British/European drug companies offer the same courtesies. I got my sharps bin free from them, too, but you mentioned they've already sent you one. If they have a customer service or support phone number you might call and ask.

Alternatively, I make my own cold packs. Originally I found the directions for therapeutic ice packs when I had my knee replaced, but it stays frozen/cold for sooo much longer than manufactured cold packs, and it is so easy and cheap to make.

I used a double zip-lock bag, which comes in a variety of sizes so you can make whatever suits best. the mixture is one part rubbing alcohol to four parts water. I filled it about halfway, and sealed it. Then I put that bag inside a second zip lock bag upside down (so the zips are at opposite ends) and sealed that. I used the second bag to prevent against leakage. If freezer bags are available, they tend to be heavier gauge plastic and a little sturdier.

I found a spot in my freezer to lay it flat to freeze. It will not freeze completely solid, but firm enough that when done you could stand it on end to take up less room.

When you use it, as it unfreezes it gets slushy, and will stay that way for a few hours. Even after it completely melts, the water in the bag will still be cold for awhile. You could use this in a small cooler to transport your supplies, and it should keep cold for six hours or more, easily.

I made two of these three years ago and still have them.

I guess I could cobble a freezer/cold bag; I've a 'picnic' bag; sort of insulated, and would be about the right size; two blocks of ice (which I have in the freezer, ice pack type solid jobs), either side; then in the boxes today were two water/liquid filled 'bags', wrapped about the drugs, which could go on the inside of the frozen blocks, and then the actual drugs inside that (so they don't et too cold but cold enough). but, that will only stay cold enough for what... twelve hours or so? - like for the bathroom work we'll need to be away for a week or 10 days, perhaps even longer, so unless we pay lots of money for a posh hotel with a fridge in it.... - plus the hastle of travelling with needles, and trying to dispose of them whilst away (well I can't carry the sharps bin with us); don't forget any travel away involves public transport, I can't drive, and William doesn't. I'm practically housebound now anyhow, thanks to the Drs refusing to treat me.

Visit your Dad's while they do your bathroom?

*definitely adds Cambridge to next summer's itinerary*

Do you remember when all toasters had metal sides, and invariably had bits of melted plastic bread sacks stuck on them.

Those Styrofoam boxes can come in handy. And you'll think of new uses for them as they stack up amd begin to take up evermore space in your home. They are quite good at keeping things cold for a couple of days.

oh, we've plenty of freezer space and fridge space for keeping things cold... I think they'll go with the nurse first time she visits; looking at what arrived this first time; the actual drugs, in the three little toothpaste sized boxes, next time on their own, will be in a lot smaller box I guess.... - ad that supply so far oughta last at least 3 months (well, 3 X 4 weeks); actually might last longer, as my initial dose is titrated low, to avoid side effects (brain swelling, mor oedema carpel tunnel symdrome etc), and may increase to about 0.4 MG eventually (very rarely higher), - so actually that may be quite a long supply of the meds already here - won't know when I'm to start it, until after bloods Monday (assuming I'm nearing 'in range' for T4/T3)

Loverly night last night. went to pub, met a few people we know, including a specialist dentist friend, who knows more about endocrinology than most of the people I've met at hospital and the singer, fiddle and guitarist from hazzed dixied.... - was chatting to him about Frank Zappa, and problems of having too much multitracking at our fingertips in the morning world of recorind....

Woke this morning feeling fine. came downstairs no problem.

started feeling dredful after the levothyroxin, and then started feeling like I was dieing after taking the steorids, with all the hart palpitations, sweating, muscle weakness that one doesn't relaly want; felt so weak could then hardly hold my tea cup so I went to bed. and thanks to the heart palpitations, the entire bed, then room, and I guess house, began to shake - or at least that is what it feels like. so I got up.

Considering just printing out my 'drug diary' I've kept since restarting the levo. and when nurses ask me how I am, or say hello, I'll just hand it to them, and not risk offending their sensibilities by talking to them at all. Its either that or I'll just punch them. can't really decide.

still sounds like you have the symptoms of hyperthyroidism and hyper cortisol after taking the drugs rather than the other way round...

Handing out the drug diary rather than saying anything to nurses should help indeed, but I can see why you're contemplating the punch instead...

yes. my reaction, of my body, to the medication is the exact opposite of what should happen; I.E., I've no symptoms until I take them, and then on taking them, I get a mixture of over-treatment/hyper sysmptoms, and symptoms of being low; it doesn't make any sense! and the Drs offer no explination, and don't appear to be looking for one The only drug that does basically produce the results its ment to is the testosterone, which aleviates symptoms of being low on testosterone in the way it basically should. Its still a rubbish treatment for low testosterone levels, not least as it... affects certain things badly but they dont' seem to consider the alternative as a treatment; replacing the missing leutinising hormone/Folical stimulating hormone instead, which things like HCG can be used for I think, and some artifical LH drugs perhaps I should just go private and give up everythign I've ever believed in visa the NHS - sadly you can't chop and chose bits private, bits not; I.E., I'd have to pay the £3K per year for the growth hormone in that situation