Down Again!!!!!

[pudmott]

yes Pooh,
my humour and the thought that evetnually this will pass is keeping me going, although at this time (3.30am) with swollen almost gooey eyes-im sure they'd be gooey if there was enuff moisture  but i can feel it- im getting a bit over it. I have just called in sick yet again cause i cant keep my eyes open long enuff or get them clear enuff to see at work properly. they are so gritty and even hourly drops are not working. My lids are getting swollen im wondering if it might be that blepharitis thing. going to the after hours doc at a reasonable hour.
My face is starting to look funny too-funnier than normal that is. Not sure but think the glands under my chin may be up and also the parotid might be on the up.

Does it end? I even considered fleetingly of going to the er and asking for some magic iv antibiotic that will take this infection onslaught away

Pud

[wordnerd]

Aww Pud!  I'm sorry you're still sick and fighting off such a collection of bugs!  I'm inspired by how hard you continue to try through to go to work despite everything.  I really admire your ability to recognize your limits and try to get yourself in a work schedule that you can manage and not make yourself worse!  It's such a hard adjustment to try and make and I can't ever seem to get it right myself.  Hang in there and I really hope your infections clear up soon!  And if things don't seem to be getting better or are getting worse, do go to the doctor and get it checked out.  *hugs*

Take care!

-Lauren

[pudmott]

it's official!!!!!!!!!!!

I HATE MY BODY!!!!!!!!!!!![/glow]


PUD

[pudmott]

I think the eyes are on the improve now. they are not as gritty today and dont feel as swollen. However as always there's something else to take its place.
Yesterday i noticed that i am feeling a little lumpy under the tongue. It feels a bit swollen and is very very dry under there. The parotids are also coming up and the tmj is sore.

oh well such is life. I see the immunologist on friday. Will see what he says.

Hope you are all well and having a good day (or nice sleep as the case may be at this point in time)

Hugs to all

Pud

[Pooh]

Aww Pud, I'm with you on "Will this stuff never end?".  I wonder that on a daily basis with "Fred".  Some days he gives me a break, well, not all day, but some of it.  When "Fred" gives me a break, then my eyes start, and if it isn't the eyes, it's some other part. 

I'm with you, I HATE MY BODY too!  Or is it just the Sjs we hate so much.  I would say at this point............BOTH!!

Take care and have a good day.  I wish that for all of us.  Just for today, have a good one.

Hugs, Pooh

[pudmott]

Pooh sorry to hear Fred is giving you trouble. Yes like you i just wish all of us to have just one day of feeling good and happy and be able to do all we want.

Are you hearing me universe?

Saw optometrist this arvo. Eyes are definately gettig better. Feel as tho i have golf balls under the tongue. Does anyone else get this?

Not sure if the face thing is glands or steroid bloat.

Too many questions

Pud

[Pooh]

Hi Pud,
Glad to hear your eyes are feeling better. 

"Fred" will never really go away, but sometimes he lets me have almost a whole day without wobbling.  Then comes back with a vengence the next day. 

Take care and get some rest. 

Hugs, Pooh

[pudmott]

Saw the immunologist yesterday. Still up and down like a yoyo. A good day or two then feel like crud. The sweating is getting beyond a joke. I have my house a/c on at 16 degrees and can still work up a swea just walking around. I glow so red i could guide a ship into port. The other night at work i drank 2 litres of water in 8 hours. I went straight fom work to the dr and he did blood tests. When i checked the results last night (perk of working in a hospital) it showed i was dehydrated. How much water has a girl gotta drink??
I had heaps of blood taken. My white cell count is elevated so are my neutrophils so there is defiantely something funky going on in my body. Im still iron deficient and my b12 is going through my boots again. My inflammaotry markers are down but steroids will do that. I also have to do  a 24 urine collection cause im getting protein and he's sending me for a scintigraphy test on my salivary glands cause im so dry sore and feeling swollen. I have that on tuesday.
I have got another ologist. i got an ENT now. i hve to make an appointment to see hime next week. Hopefull he can work out why my face is so sore and my sinuses wont stop being infected.

So just generally im feeling like C***. I have done 2 night duties and have two more to do. Im hoping the body will last. It would be nice to do a week without calling in sick. I think i will just hook myself up to a saline drip to keep myself hydrated and keep plugging on. 8 weeks on im still none the wiser as to whats going on but at least im gettting tests and hay might shed some light. At least my dr agrees, this has been going on too long.

He asked me if i was depressed and was surprised when i said no. he said you should be with all this going on. I told him i have these wonderful friends who i talk to and are so supportive. It helps so much.

Pud

[irish]

pud, I know just how you feel with the sweating and drinking and drinking. I know that I get dehydrated as the days I sweat so much my urinary output decreases a lot and my urine is much more concentrated. I spend so much time drinking it is rediculous. I don't drink a lot all at once, but I still put lots of ice in water/pop etc and eat a lot of ice along with the other fluids.

It is hard to find fluids that agree with me as my tummy has so many taste perversions and ability to tolerate foods and drinks, etc. I usually find the carbonated mineral water goes the best along with my Pepsi. Also the decaf coffee several times a day.

I am sure that with all the running around you do at work that you get beyond miserable. I remember doing that for so many years. I always felt so weird and always felt like others could see it on me. I guess they couldn't thougoh. Take care of yourself and get straightened out. Irish

[pudmott]

hey Irish,
I know they can see it on me at work cause i literally have sweat dripping off me. my air is soaked and my arms. my uniform is wet. They all look at me as tho im something from outer space. Especially at night when they all have cardigans and jumpers on and im fanning myself and drying off with a towel.
I am mostly drinking water. i have the odd can of coke but since i have been sick and my taste has gn funny im not likin it. its god in a way cause i was addicted to the stuff. now it takes me all day to drink a can. i also drink powerade every now and then just to replace the salts.
and yes your right after an 8 hour shift i come home miserable. Even the mere thought of heat makes me ill. Today its 30 degrees and i just cant get cool. Im sick of being wet. Wow oxymoron. a sjoggoe sick of being wet. did i say that. OMG im getting delerious. Now if only i could put the moistue in my eyes and mouth and gut i'd be fine. Stupid body.

Pud

[Pooh]

Pud,
I'm so sorry you are still having this problem.  I can only tell you that once it stops, it will a long time before it happens again.  I went through several months, well a lot, but then I noticed I wasn't sweating at all.  Even in 90 degree weather, so I guess I blew my thermostat completely. 

I hope the doctor's get this under control for you and you can once again be comfortable.   

Take care and keep smiling, if nothing else, it makes people wonder what you are up too.

Hugs, Pooh

[pudmott]

I found a great way to cool down yesterday while i was sleeping. I had my fan on and blowing on my face but i also had an icepack and laid it across my head wrapped in a pillow case- the icepack not my head. For the first time in weeks i actually woke up not covered in sweat and felt quite rested. I went to work last night and have just come home and actually feel quite human. I also used the icepacks at work. Each time i felt myself heating up i got an icepack and wrapped it in a pillow case and just rested it on my face. It cooled me heaps and i got through the shift so much better. I have one more night shift to do and then im finished for the week. I think i might actually make it through the week without calling in sick for the first time in over a month.

Yay!!!!!!

Pud

[mim]

Hey windy,

How U doin???

Hope you are feeling a bit better, glad the ice packs are working, and especially pleased to hear you are finishing your run of nights.  Take this week to 'try' and relax and enjoy some downtime.  Sometimes the body is just screaming enough is enough and a couple of days in bed, complete rest, although not always practical can do a world of good.

((((((((((((Pud))))))))))

Mim xx

[pudmott]

mimsy!!!!!!!!!!!!!!!!!!!!!!

How ya doin honey. If i had intrnet at work i woulda chatted on Thursday morning but we're not allowed we might do something naughty.

I got through my nights and am feeling really good. My body likes night shift so much better. Not so demanding. And i sleep so much better in the daytime anyway. So for the first time in a month i have done a weeks worth of shifts ( a week is 4 days for me now) without being sick and falling in a heap. I am a happy little pud this morning.

My bloods are showing theres defiantely something funky going on with my body but not sure what. My white cells are up and i have neutrophilia but that could be from the pred too. My kidneys are a bit of a concern and i have to do some tests there but i will probably have to wait until next week for them. i am having my salivary glands scanned tomorrow and have to have radioactive dye so i wont be able to do wee stuff for a bit. Otherwise it will light up like a roman candle. Not a good look for ones wee.

I just hope we find something definitive. Not that i want to be sick but there has got to be some reason why i feel unwell. This is certainly teaching me patience.

I have two days off now so am going to chill. Hope all is well.

HAPPY PUD