View Full Version : Arghhhhhh

07-17-2009, 02:38 AM
God i hate my life sometimes.
Last week i came off the prednisolone.
Yesterday i notice that i have these little red pin prick type rashes on my legs, the same that i had last time when my platelets were low.
So i was thinking ok, i will go get a blood test on Monday and see from there.
Then tonight i took my dogs for a walk about 4:30pm. April (dog) spun in a circle and the leash sort of tighten a little around my upper arm.
At like 6pm tonight, i notice that i have a massive bruise on my arm.
Soooo i know my platelets have come down again.
Hematologist said last time to call him if anything like this happens. I call him and his office is closed and wont be open until monday morning. I left a message, maybe he checks them over the weekend.
So then i go hmmm. I will call my GP. Nope, GP isnt in until Monday.
Didnt know what to do, so i called the doctors back and asked to speak to any doctor. He told me to come down to the clinic tomorrow morning and see the on call doctor and he will send me to get some blood tests, but they probably wont be back until Monday.
I have just been sitting here crying for the last hour. I just am so over this.
I was jsut getting back my life in the last week, and now this has to happen.
I really dont want to go back on the prednisolone, it made me gain so much weight that i have just started losing in the last week, it stopped me from sleeping, i had the worst mood swings ever, and the migraines it gave me were incredible. Those few months have been the worst of my life.
I just want it all to be over. I have teaching rounds in 3 weeks and i HAVE to be able to do them.

07-17-2009, 05:24 AM
ERGH....Sounds like your having a right rollercoaster ride of it!

Do you not have a walk in center like part of a hospital you can go into to see? if all else fails and its the w/e i know i always have this for back up, which i took advantage of the other day (sunday) whooop :yes:

Im sorry to here your going thru the mill, its sad when we do, i wanna give you a bug hug and do a little dance for you to cheer you up (i dont dance) :)

Why is all your drs off on a friday? do you live in ireland or summin (irish joke)

Anyway i hope you feel a bit more positive soon sending you hugs from England


07-17-2009, 06:20 AM
Can you go to and ER? Your doctors don't have emengency call when their off duty?

If you can do either one i would. the hospital can get labs right away won't have to wait until monday. if you could also take any information with you and maybe the dr. on call can give you something until you can see your own?

Hope you get things straight very soon.

Sending you a great big hug.:grouphug:

07-17-2009, 08:52 AM
I know how you feel Monique. Sometimes it's like this damn disease will never leave us alone. One step forward, then ten steps back. You play by the rules, stay out of the sun, take your meds, and then just get sick again. Makes a person angry, bitter, makes me want to just give up sometimes. And of course, when something happens, why does it so often have to be on a Friday? You can't get help until Monday, so you're left sitting around for two days wishing you could just get on with it, and get better. And the worry, can really be bad.

I have had my experience with prednisolone and other similar steroids. It took it's own toll. Insomnia, mood swings, having to lose the weight you put on from it. It can be overwhelming. The best thing to do right now, is step back, try to take a breath and relax. Try not to think about your responsibilities three weeks from now, try not to think about Monday even. If you can get in to a Dr. tomorrow, just focus on that. Know that the best thing you can do between now, and tomorrow morning is to relax, and try not to get further stressed out. We all know how stress can feed Lupus flares. Just try to concentrate on the time between now, and your next appointment, and no further. I know it's hard to do, but it almost always works for me. Take life in little chunks that are easy to manage. Go easy on yourself, and remember you're not alone.


07-17-2009, 09:37 AM
Sorry you are going through this and bruising etc. I know how it feels when you think your doing well and feeling great and seem to backslide into symptons you thought were gone but try to think of it this way...could be worse...you could be experiencing flare up pain which is by far the worse. Try not to all this to stress you out.

07-17-2009, 08:35 PM
Thanks guys.
I went down to melbourne pathology this morning and had a blood test done...i guess i wont hear back from them til my doctor is in on tuesday unless the platelets are really low. I could have gone to the ER, but i dont think it is bad enough yet, and it would just have been a waste of money because the blood tests at melbourne pathology are free.
And my doctors do work on a friday, but it was after 6pm when i called them, so naturally they werent there...
You know what...i would almost rather the pain...its not dangerous, it wont land me in hospital attached to drips for days...yes i think i would rather the pain....
Im just over the blood tests and my stupid hematologist who is like the hardest person in the world to get hold of...if i wasnt told he was the best hematologist in mlebourne then i would find a new one!!!!!
Anyway, whinge over, theres nothing i can do til monday anyway...

07-18-2009, 06:20 AM
hi monique,

oh, i hope your platelets are not back down, and that you end up hooked up to tubes...yuck....no wonder you are worried.

I understand your frustration about lupus not leavin you alone....just when we find something that provides some relief, we feel a little better, then we get accustomed to feeling decent, then this beastly disease raises its roaring head and strikes us again....you deserve a good cry. I often want to just hit something, but i know that would cause me to cry with pain.....so what do we do?

I hope you have a peaceful weekend, and please let us know what your drs. say on Monday.