Scared ********! Looking for words on encouragement please?

For those of you who have helped me along the way since I have joined this summer, may remember my journey thus far. I leave Sunday to have my initial appointment, or assessment or something, with the Lupus Clinic in Montreal.

I am feeling so scared right now. I am on the verge of cancelling :(

Why am I scared? I know I have DLE, I know my blood work doesn't show SLE. I know something is wrong in my body and it's systems. I know I have been having doors shut on me. I have lost faith in doctors and I also know that I shouldn't feel this way. I should be positive, optimistic, I've waited for this appointment, this opportunity and I know I need to follow through but I am super duper scared.

Yes my DLE is out of control, but it always been. The only time I have not constantly scratched my head or wince in pain was when I was on Prednisone. It was glorious! Most of my unexplained symptoms were alleviated.

Wonderful! Kind of. The medication helped, absolutely! But I don't want to take a pill and not know why (besides my discoid). And I am frightened that because of I have seen the before, during and after of the using prednisolone, I might be given a script for it and sent along the way.

I want answers. I don't simply want a pill. I want knowledge, know how, do's and don'ts, affirmation and a possible type of future outlook.

I am very mild with my symptoms but they are there, the wax and wane, paralyze at times and remain constant with others. But they are there...when not on the miracle pill (as I call it).

I am scared I will get brushed off, dismisses, or deferred to someone else who closes their door on me...like a few others before.

I scared. I'm tired of this. I need some encouragement please?

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  • Hi Laura4228,

    Sorry to hear you are feeling scared at the moment, I think it's natural to feel this way especially if you have lost faith in health professionals as you go on your DLE/SLE journey. Things and experiences can and will change along the way. When we are ill we do want answers, and we want to be listened too. All the very best for being fearless, open and positive, this is your life, don't give up. Hope you have supportive company for your appointment, and perhaps write main points down to get most out of visit.

    Bright blessings X

    TT

  • Thank you TT

    I think one of the reasons that may be contributing to my fears, is that I am traveling over 3500 km for this appointment and I have no clue who I am seeing. I was explained that it might be one doctor or a panel.

    I do have very supportive company thank goodness!

    Ack I am a nervous wreck!

  • Just try and be as prepared as you can be, and if possible enjoy the journey, you may as well, you have to do the mileage!

    Good luck!

    TTx

  • Hello Lara: oh boy am I identifying with your post! Cause, in the course of my decades in the diagnostic wilderness, I've made many long journeys to appts in fearful anticipation. And then I read the 3,500 km...and thought YIKES! Am so glad you're in really good company for this....Tripitaka's replies say it all so well, I have nothing to add, except: remember we're all right by your side πŸ‘«πŸ‘­πŸ‘―β€β™‚οΈπŸ‘¬πŸ‘¬πŸ‘―β€β™‚οΈπŸ‘­πŸ‘­

    Please keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • I guess it's impossible to know how it is going to go, Lara. But as you say, you have waited a long time for this appointment and its a big commitment for you, so it's to be expected that you might feel overwhelmed by your hopes and fears - like before a vital exam at school, or getting married (I imagine!)

    If you can articulate your thoughts as well as you have done here, maybe that will help them to understand what you are looking for?

    Hope all goes well,

    Mx

  • Thank you everyone for your words. I approaching them. Need them

  • Ha!

    I wake up and while enjoying my cup of morning Java I get a phone call...from the lupus clinic!

    They called to cancel my appt!

    I was nearly in tears! One small part of me said...yes! But the logical and realistic side fought hard and told the girl on the phone...

    "No, no, no, no!"

    I explained to her that I was coming from Edmonton and that my flights were paid and hotels booked! Once she heard that, she said, ok. We won't cancel.

    I asked her why were they cancelling? She explained to me that not all the doctors will be in on Nov. 30th.

    Oh. Now this has me a bit more worried...question playing again and again in the back of my mind all day...will I be seeing the right dr? Will the one I need be there or will my appt be futile?

    Ack me just being silly and over anxious...I think??

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