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Thread: Hi All

  1. #1
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    Default Hi All

    Hello,

    Just wanted to check in, sorry it's been so long since I have, maybe I was missed and then again maybe not.

    My hands have been really bothering me so typing has been hard. Also I've been crazy busy and in full flare. My rheumy is a nut job so I'm getting a new doc up at OHSU which is a good thing, I've only been asking for the referral since October!!!! But my GP and rheumy share a practice so I'll let you draw your own conclusions as to why I haven't been sent to OHSU until I started kicking and screaming. I had a horrible reaction to the last drugy my doc put me on and then he said it wasn't the drug, funny, the reaction stopped when I stopped taking the drug, AHHHHHHHHHH, idiot! So I guess you could say I'm mad and I don't trust him anymore and it's time to move on, I am sooooooo glad to be getting treatment from a great hospital, the only problem is, I can't get in until August so right now they are just treating my pain and the lupus is just kickin' my butt!

    On top of that, we are driving from Oregon to Nebraska next week for the custody hearing, we are trying to get custody of my 13 year old step-son, I really hope we are given custody, even if I'm this sick, because he needs us and that matters more than anything! That drive really takes it out of me though but I'm going to be more prepared this time so hopefully things will go well.

    OK, that's enough for now, hands are hurting so I gotta go, I really hope you are all doing well and Rob, I really do intend to answer your question, I've just got a lot on my plate right now but I will PM you soon.

    Take care all!

    onpointe
    "We are the music makers and we are the dreamers of a dream." Willy Wonka

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    It's so good to have you back!

    You were/are missed! I was thinking about you just yesterday. I figured you were busy, or sick, or both. I hope the custody hearing goes your way. Custody issues can be an emotional minefield for the parent, or step parent, not to mention the child. As far as your Dr. is concerned, I wish I could say I'm surprised, but I'm not. I hope the new one you see in August can help you. I've been on a rollercoaster ride of flare symptoms myself, and the IV methylpred I had in relation to my MS was awful, but it has helped overall. The side effects at the time of the actual infusion were bad, but didn't last long. I know you'll talk to me about my question when the time is right. I'm in no hurry. I'm just glad to see you back! Good luck in Nebraska, I hope it works out for you and your step son. I'll talk to you later.

    Rob

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Onpointe :lol:
    Yes, you were missed. I'm so glad to see your post, but sad to hear that you are still in pain with such a long wait to see a doctor. I really hope that this new doctor is more interested in taking care of you and that you are given treatments that not only help the pain, but that will manage your disease so that you can enjoy raising you step-son.
    I wish you the very best in your custody hearing, I do hope it all works out in your favor (which means, in his favor).
    Take care of yourself and we will be waiting to hear from you.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    So good to hear from you! I hope the drive and the custody hearing go well, and Oh do we all understand the sore hands!

    Hugs (gentle ones of course) and positive thoughts coming your way.
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    thanks you guys! I appreciate the support! More than you can know.

    I am hopeful about this doctor, she's the head of Lupus clinic at OHSU, one of the reasons I'm scheduled out so far is becuase her assistant got my med records and decided I needed to be seen by this doctor (that's doesn't frighten me at all) .

    Well, I gotta run, take care all!

    onpointe
    "We are the music makers and we are the dreamers of a dream." Willy Wonka

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    Hugsss
    onpointe and good luck...keep ups posted. Hope your new rhuemy isn't a stink face.
    Oh look ... a cookie

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    Hello, onpointe. Yes, you were missed! So good to hear from you - I'm excited that you're going to see a real-live lupus specialist! Boy are they scarce! I'm just sorry you have to wait so darn long. I've been having a lot of hand pain lately, too, so have been posting a lot less. My sympathies!

    Best of luck in Nebraska. I know how important that is. We got custody of my step son when he was 14. It was voluntary, fortunately for us, on his mother's part. (She knew she couldn't manage him any longer...and she had mental health issues to resolve.) It made all the difference in his life - we know that now. I'll send positive thoughts......

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Onpointe, on your long drive ....hydrate! Drink drink drink even if you have to stop hourly to pee. Don't so what i did this past week and end up causing a UTI. I once did the 60 mile 3 day cancer walk (in my pre-lupus days) and they had a saying "Drink, pee, avoid IV" so chant that while driving. Sending good vibes your way for the custody hearing ....like you need that kind of stress eh? Best of luck!

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