So… I chose Stelara they took a chest x-ray today and a tuberculosis skin test… I thought I would be getting my prescription today… but now I have a phone appointment next Wednesday to talk about results and schedule the first injection… which will be even later… I forgot about the tests… I’m so tired of waiting… I really really hope this will be my wonder drug!
Me too, Cynthia. We all hope you will get some comfort from it,
So hard this waiting. So many different things we have to do…almost there. I hope it goes as well as you hope. For so many it seems to help so much. I am like you too in that I am very hopeful that it works for me a little like magic. I think hope is an important part of this journey…keeps me moving forward.
Hope is a always a good thing. Will be hoping right along with you that this gets you some relief!
I’m stuck between hoping so much it will be a definite let down and being so pessimistic it will be a self fulfilling prophecy… (how annoying that I have to Google that and my keyboard doesn’t suggest a ph when I write f…)
Anyway my anxiety makes me feel like it all depends on me getting my attitude right… Which doesn’t help with the positive thinking…
Oh and your return post got me to see how much a hometrainer would cost… which was only €25-50… so now there is one in my house thanks for that (a bit sarcastic from me now but probably a very big thank you from future me… if I can kick the now me on it everyday (starting slow of course))
Attitude probably does make a bit of difference. But I don’t think that necessarily means total blue sky thinking. Only you know if you’re trying to do the right things, a bit of cynicism on the outside probably doesn’t matter one jot and some of us quite enjoy that!
You’ve come a long way, that’s obvious to anyone here I should think. Wishing you a great result!
I’ll be hoping along with with you. I do hope it’s properly positive for you.
I think my brother went out with Stelara once. Her name was something like that anyway. I hope your relationship with the injection is easier and longer-lasting than my brother’s!
Hope it will be a thanks in the future, for sure. I don’t know if keeping up on the exercise is what’s keeping me from having another flare or not, but the fact that it’s become both part of my routine, and actually fun, helps a lot.
I hope it will become fun… I can’t imagine that though…
2 more weeks of waiting… I don’t know how I’m going to do this?.. Who wants to take a bet that I’m sick on the day I finally get an appointment?! Just wait a little longer!! It’s not like your in a lot of pain!!!
One of the unfortunate sides of the disease - everything is always hurry up and wait.
Why are you having to wait two more weeks Cynthia?
There too busy… everyone is making me wait… Even my primary care doctor doesn’t have time until next Friday… and I called Wednesday… well at least I’m not in a lot of pain… /sarcasm
The time will pass Cynthia, ‘only’ 12 days to go now. You’ve done your bit by finding a great consultant, the waiting is the trade off. Most of the waiting I’ve endured has paid off in the end. I can tell it’s hard, but hang on in there.
I don’t have an appointment yet… The guy was gonna ask my doctor if I’m a priority… He was going to call me today… It as a mistake asking to get seen sooner… now the 14 days will start whenever he finds the time to call me back…
I’ve been lying in bed for about an hour and everything is still burning… I won’t survive this… I called the psych’s office to ask how the waiting list was going… I’m 2nd on the list… i was like 4th in February… and at work they want me to be back 100% yesterday… They think if you just call the doctor they will squeeze you in…
Huge deep breaths Cynthia. Huge big deep ones. It’s now Friday evening. Nothing much will happen till Monday. You can use these two days to gather yourself together and allow yourself some rest and some time just to lessen those awful and very understandable feelings of panic and awfulness. So get distracting. At my worst I play incessant patience type card games on the computer. My chair is the most comfortable one I have so sitting at the laptop is the best place for me. I can play for them hours. First I’m comfortable. Secondly I win some, always makes me feel better and most of all time passes. And thirdly my brain is engaged in something mindless and repetitive which then becomes soothing. The more I’m soothed down the less full of angst I am. I may end up relatively brain dead but that’s a relief too. So get as comfy as possible and just distract. Colouring (idiotic as it is) is also wonderful. Stupid stuff like that has been my lifesaver frankly. If I’m really overwhelmed and in tears, I put on some music I love really on loud downstairs, take an over the counter sleeping aid and just go to bed. And then I repeat all of it and some more the next day. Just to make time pass. Which is all you need to do right now. Hugs.