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

I'm starting to gradually think that Addison's disease is actually slightly less fun than cancer.
Especially since I got to experience, first hand, a so-called addisonian or adrenal crisis.

The story goes something like;
Got to take hydrocortisone every day, to replace the cortisol my adrenals no longer produce, because my knacckered pituitary gland, isn't sending the appropiate chemical signal, AKA ACTH, to the adrenal glands, to tell them to produce the cortisol.
So, I get to take hydrocortisone every day.
Side effects of hydrocortisone;
weight gain - about 4 stone so far (well, it is a steroid).
dizzyness. constant.
memory problems, short term memory is just a shadow of what it used to be.
Spatial awareness - lack of, very hard to discribe, its like being constantly stoned, and on ketamein at the same time, in a kind of brain fog, and spatial awareness just vanishes.
Sensory perception changes; I can't cope with noises anymore, again hard to describe, but I find too much backround noises, especially when lots of differnt sounds, impossible to process.
Anxiety, paranoia.
Lowers bodies ability to fight infections.
Mood changes.
Oedima. - I've gone up two shoe sizes, and endocrinology currently refuse to accept hydrocortisone causes the oedima in legs, feet, fingers and hands.
Hunger. did I mention the weight gain. constant. constant. hunger.

But, it also stops you from dieing, so endocrinology are really kinda desirous of my taking it.


Now, one of the side effects, in particular, is kinda important, namely the reduced resistance to infections.

I have a cast iron stomach. I don't ever get food poisening. - history apparently.

So.... --

After two gorgeous days spent at a nearby hotel and spa with DQ, being lavished in all manners of ways, we returned to the house here, in Cambridge, and the night before the wedding, W, I, and DQ plus a friend of W's who'd come down for the wedding, go out for a Chinese takeaway, at the one underneath the house, which we've used a lot, and which is always very good.
We get a bunch of dishes and share them out, all eating a bit of everthing basically.
All is fine....

Morning of the wedding, we all get up, I shower, and change into my wedding outfit, purple leggings, white Arabic robe and purple corset.

I then start feeling ill.... oddly ill... or ill in an odd way... Suddenly very hot, breaking out in a sweat etc.
So, I remove the corset try to breathe tmyself calm.. and... then we have to go... taxi is already ordered, and we do have a deadline, namely the wedding... - I'm feeling 'very wobbly' so avoid my gorgeous heels have to leave the corset behind too, as I still don't 'feel right'.

par-way to Shire hall, and the wedding.... I have to ask the cab driver to pull over... and... I chunder most spectularly out of the open door and onto the street

Not feeling any better by the time we arrive at Shire hall. Tell the registra that I'm not feeling that well, get some water to drink etc, and then get in, and on with the wedding as quick as we can.

Some time after the wedding, one of the guests mentions to me, they wonder why I was leaving such a big pause before I said some of my vows; The reason was the level of concentration it took to stop myself vomitting again.

Got through the vows, even signed the register etc, almost started feeling a little better.

Then.
Yeh, threw up again all over myself!

Luckily a guest at the wedding had a car, and drove me and W back to the house...

Where I got into bed... shivering... wanting more and more blankets; my skin was soaked in sweat though, and hot enough to boil an egg on.

Luckily there were two MD's at the wedding, and they 'cared for me', for a while, until there wasn't anything else to do, so we got up on the 9's and soon the paramedics were in the bedroom.

Hydrocortisone injected, temp taken (39C), oxygen saturation measured (very low) Bp measured (dangerously low), blood samples taken etc., etc.

So it was off to the hospital.

Emergency admisions were marvelous (far superior to A&E in my experiences).

Canulars were inserted (about five I think), more bloods taken BP tempt etc all monitored, IV fluids to try get the blood pressure up and rehydrate, etc.

They were pretty worried at that stage that it was sepsus as I had a lot of markers of sepsus and there was talk of getting me up to intensive care and having to have lines into my jugular veins (not entirely sure what they were for).

Anyhow, the intermuscular hydrocortisone stabelised me, and there was some IV antibiotic too.

Spent my wedding night, therefore, having a catherter fitted, and was then taken up to a ward and remained in Thursday 26th, Friday 27th, and finally got released on the Saturday (when they finally took that damn catherter out, ouch... )

Apparently in my abscence though, the rest of the wedding went really well... And on the bright side, I saved a fortune in the pub that night I guess

Just hope soon endocrinology can sort out my drugs better; trying to persuade them to switch frfom hydrocortisone (because fo the side effects), and switch to an alternative.

Should have had an appointment today, in oncology clinic- they canceled it, as my CT scan was clear (thereby proving they only care about their stats, and worry if they think the cancer has returned; the whole point for that CT was because of the oedima I have).
So, at least now, endorinology ignored the oedima; sent me to GP; GP did bloods and eCG, then sent me to oncology; so I guess now I'm sent back to endocrinology.

Next appointment is Monday, endocrinology, for a fasting glucagon test, plus my next nabido injection (testosterone); hoping to quizz them on oedima again, and transfering from hydrocortisone to a replacement steroid.

Still not feeling too great really. although I am starving hungry - oddly lost about 4 Lb; had a slightly reduced appertite after the hospitalisation.

Got a lot of messages from some of the freinds I had invited to the wedding, saying how much they enjoyed the reception/post wedding bits; and a pity I wasn't there, so plans hopefully afoot soon, to put on at least one, if not two, repeat receptions in effect...

spent all day today in Hitchin, having a PIP assessment (assessment for the new disability benifit, personal independence payment, which is replacing disability living allowance (DLA), the old disability benifit: Hoping I might recieve more than I do currently).

Oh, and at the moment I've got tennis elbow (don't laugh, its so painful!); and a cold and sore throat (my body really doesn't cope with little infections like that very well anymore, sadly).

But, asides that, everythings great Oo, and oncology said my CT scan err, last week, was clear, so, I guess that justifys going to the pub tonight?

Bloody hell, princess! They just have to figure this out.
Do get well.

I hope you had a good time at the pub at least

Damn, you just can't catch a break! It's like your life's difficulty level is set on 11 lately.

I do wish your doctors would cure their own cranial-rectal inversion syndrome and figure you out.

Figure out your medical status, anyway--figuring *you* out may be asking a bit much

But seriously, what Pierce and BG said

That was some day to remember. Or better still, forget. I'd say I was keeping my fingers crossed, but it needs something stronger than that to sort you out. Hope the medics get their fingers out soon and start recognising that your condition is simply very unusual and the papers on it have yet to be written.

figure 'me' out... nah, I doubt even my endo professor could do that The thing is, it can't be that unusual, all the side affects I get are clearly already documented with the hydrocortisone but, its like they just don't seem to care about them; I am assuming there is a solution of to them, or most of them, rather than, just 'tough' its how it is, - if it is 'tough thats how it is', then they could save a lot of effort on their behalf, and pain and discomfort on mine, by just telling me so, information giving is not their strong point though, anywhere in the hospital really.
Like on my discharge recently, the nurse tried to tell me incorrect information for taking my levothyroxin and then scripted me a bottle of random codeine... - I kept asking her why I was being given a bottle of codeine, but she just didn't reply in any sensible way to answer the question - mind, as luck would have it, its proven very helpful at the moiment whilst I've got this cold and sore throat, hopefully stopping my coughing enough to prevent yet another bacterial infection and tonsilitus for the second... or is it third time this year

I'm a bit worried they might have marked me down as a 'trubble maker', on my notes, with my last stay in hospital... Can't recall if I mentioned it, but at one point, they['d basically locked me to the bed, and I coudln't move, due to drips, cathertas, my wrist being paralised by the canular, and the sides of the bed being up; my 'buzzer' out of reach yet again; so I used my legs the only bit of be able to move to any great extent, and kicked the bottom of the bed so hard it broke off - well it got their attention

That sounds like one serious bout of "restless legs". I only ever once hat restless legs and that was in an ICU.

You ought to give them all your journals to read. Anyone reading this must want to give them all a good shaking.

Was probably helped because my legs weigh so much now; must be kilograms of water collected in them, from the oedima the Drs keep ignoring and passing from one to the other... endocrinology to my GP, GP to oncology. oncology back to GP, GP to endocrinology... - quite why none of them have refered me for an ultrasound on the leg veins/arterys etc, or just refered me to a vascular Dr is... mystifying

oh nos! just read the appointment leter for Monday's appointment in Endocrinology. have to be there for before 9 AM, to start the testing (four hours of tests followed by my regular testosterone injection (I'm rather low on testosterone ATM again ) and...

I'm on water only from midnight Sunday night, until the end of the test! over twelve hours with no food? I'm not even sure that is possible - luckily the pub closes 10.30 still on Sunday so I can get somthing to eat after the pub, then go onto starvation must remember to charge up the IPod Sunday night to listen too for the four hours of blood letting - and after htat I have to have the strength to argue with them that they oughta do something about my hydrocortisone meds, and my oedima in my legs feet arms and hands (which, oddly, as a side affect of hydrocortisone (if it is a sideeffect of the HC), can eventually result in heart failgure, so kind aodd they are ignoring it so much )

Yikes, what a saga indeed, and just typical on top of everything else... Well done on getting through the important bit with W even though you were struggling so much - you both look so happy in the wedding picture

I thought your outfit looked lovely in the wedding picture, but I had wondered about where the corset was, and now I know

Hope all goes well with the testing, and hope you get some helpful answers this time

Oops - rogue loveblush at the end there - meant to do

What a rough time! So sorry you're having such trouble!

Have any of your doctors suggested compression hose for the oedima? Has helped mine immensely (although I suspect I'd get even better results if I was more religious about wearing them!) Hope you're on the mend soon!

If they haven't, they're incompetent.

Nope... no one suggested them... the only suggestion is that I 'sit with my feet up'

do ordinary stockings do the same job? I wear them a fair bit anyhow

Yes, what he said

By all means, try to get some. I couldn't tell you what compression to get (I'd say your doctor should be able to, but if he hasn't even suggested them... wow.). You'll need to measure your legs to be sure you get the right size, otherwise the compression will be too high or too low, also they won't fit.

But if you get a light to medium compression, wear them during the day, you should see quite noticeable difference within a week or two. They're quite comfortable, too.

Not really. You should be able to get some at any store that sells medical supplies. Our drugstores have them, so I suspect your chemists might also.

Yep. I found them online at Boots.

My god but it's been a rough old time

Your medical "professionals" really need to pull their collective fingers out! Surely you're not the first person with multiple issues? There needs to be some kind of liaison doctor who can bring all the departments together and come up with a whole body plan. It's ridiculous. I'm finding it amazingly frustrating just to read about - it must be hell actually living it.

Deb

pah. hell is dealing with me in a medical context Its... been unplesent at times, esp with teh psychiological changes theat the hydrocortisone causes, suicidal thoughts arn't very nice really, but knowing what is causing them, at least makes them managable anyhow, even I realise suicide is imposible if your imortal so that solved that problem really