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Thread: "It's not Lupus" ..... Quoting Dr House

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    Default "It's not Lupus" ..... Quoting Dr House

    I have never seen these episodes that people often tell me about. Bu apparently it really isn't Lupus.

    I thought I had better let people know why I have disappeared for a while and to explain why I will be gone for quite a while.

    My GP and Rheumy believe that there is something else wrong with me unrelated to Lupus. So I am being poked, prodded, injected, sucked out, you name it, I am having it done to me. My GP is convinced something serious is wrong with me, but I keep telling her that as soon as my feet and hip get steroids shots, I can do more exercise, build up my strength, build up my muscles, sleep better, put on weight, and start to become 'me' again.

    As many of you know I am a very positive person, always willing to make people who feel bad about a situation have a laugh. I am heavily into trying to be physically, emotionally, and spiritually healthy. But with my rapidly failing health, I must admit, my life is being sucked out of me. I am walking around in a trans most of the time, not able to function. I am struggling trying to complete the end of term. School breaks up at the end of next week and I am busy trying to grade papers, and write reports. Which is so difficult when I cannot think straight.

    My current situation is: C .... R ..... A ..... P !!!!!!!!

    • My muscles are fast wasting away. I could swim up to 15 mins in the pool and stop only because I didn't want to do too much. I cannot eve swim 1/3 of the pool now.
    • My upper strength has gone from me. At times I cannot even carry a cup full of hot water to my classroom.
    • I cannot stand for more than 30 seconds
    • I am waking up every hour, and probably not even sleeping for half of that hour
    • I have no idea what I am supposed to teach, I have a note book with me at all times to remind me of what I am supposed to do. But fortunately I think I am still teaching reasonably OK
    • I mix up the kids grades, and then have to check and recheck them
    • OK OK, so there is a lot of brain fog happening, you can only have to imagine what it is like for me
    • My joints are so sore - and it really isn't Lupus, that is why the DRs are so worried
    • I am still loosing weight.


    On a positive note, I have had one steroid injection in my left foot, the right will be done on Friday. Unfortunately, I found out today that it will take 3 - 7 days before I will feel different. But my GP said that she is pretty sure that it won't make any difference because there is something wrong with me. On top of everything, I keep loosing my balance, more than ever

    Anyway, you get the idea, it is 3:51am, and I have bee awake for a couple of hours, and I need to leave home at 7pm to drive to the hospital to get this whole body scan done.

    Oh and I said to the ultrasound doctor when he gave me the steroid injection that I thought the injection in my foot would be painful, and he said it usually is, but with the amount of pain I am in, I wouldn't have felt it. Gee that was comforting.

    Usually when I am having a bad time pain wise, or health wise, I usually deal with it in a positive way, and really appreciate the little things in life and enjoy myself. I put on my happy mask and therefore ... I become happy. But I found myself a few weeks ago becoming agitated, and it was reflected in some of my posts. You probably wouldn't have even noticed it, but I know when my posts started to change. So I decided to stay way from WHL until I started feeling better physically and mentally. I noticed a few people mentioning that they wished 'Linda was here to make us laugh" Sorry guys, Happy Linda is no where to be seen for the distant future.

    I am really snowed under at school and I am trying to get the reports completed, My school is very supportive of me, and has made so many accommodations. But if I don't get the reports finished, I still have to do them during the holidays, and I am going interstate for a work conference for a week when school closes. I would like to actually have a few days holiday before coming back home and starting the whole planning for the next term nightmare. It isn't going to be easy for me especially if I keep deteriorating, and the doctors haven't found out what is wrong with me.

    I will check in from time to time, but I won't be posting anything for a long time. Sorry guys, but I cannot risk saying inappropriate things, you are all so special to me and you have no idea how happy you make me feel. Bye for now, look after yourselves, live a very healthy lifestyle, and what ever you do, don't let that mask slip... keep it glued on with super glue.
    Diagnosed with Lupus - 22 June, 2010

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    Oh Linda I'm so sorry you're going through all of this. I hope your doctors can get to the bottom of what's going with your health and make you better real quick!

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    Quote Originally Posted by Linda From Australia View Post
    I have never seen these episodes that people often tell me about. Bu apparently it really isn't Lupus.

    I thought I had better let people know why I have disappeared for a while and to explain why I will be gone for quite a while.

    My GP and Rheumy believe that there is something else wrong with me unrelated to Lupus. So I am being poked, prodded, injected, sucked out, you name it, I am having it done to me. My GP is convinced something serious is wrong with me, but I keep telling her that as soon as my feet and hip get steroids shots, I can do more exercise, build up my strength, build up my muscles, sleep better, put on weight, and start to become 'me' again.

    As many of you know I am a very positive person, always willing to make people who feel bad about a situation have a laugh. I am heavily into trying to be physically, emotionally, and spiritually healthy. But with my rapidly failing health, I must admit, my life is being sucked out of me. I am walking around in a trans most of the time, not able to function. I am struggling trying to complete the end of term. School breaks up at the end of next week and I am busy trying to grade papers, and write reports. Which is so difficult when I cannot think straight.

    My current situation is: C .... R ..... A ..... P !!!!!!!!

    • My muscles are fast wasting away. I could swim up to 15 mins in the pool and stop only because I didn't want to do too much. I cannot eve swim 1/3 of the pool now.
    • My upper strength has gone from me. At times I cannot even carry a cup full of hot water to my classroom.
    • I cannot stand for more than 30 seconds
    • I am waking up every hour, and probably not even sleeping for half of that hour
    • I have no idea what I am supposed to teach, I have a note book with me at all times to remind me of what I am supposed to do. But fortunately I think I am still teaching reasonably OK
    • I mix up the kids grades, and then have to check and recheck them
    • OK OK, so there is a lot of brain fog happening, you can only have to imagine what it is like for me
    • My joints are so sore - and it really isn't Lupus, that is why the DRs are so worried
    • I am still loosing weight.


    On a positive note, I have had one steroid injection in my left foot, the right will be done on Friday. Unfortunately, I found out today that it will take 3 - 7 days before I will feel different. But my GP said that she is pretty sure that it won't make any difference because there is something wrong with me. On top of everything, I keep loosing my balance, more than ever

    Anyway, you get the idea, it is 3:51am, and I have bee awake for a couple of hours, and I need to leave home at 7pm to drive to the hospital to get this whole body scan done.

    Oh and I said to the ultrasound doctor when he gave me the steroid injection that I thought the injection in my foot would be painful, and he said it usually is, but with the amount of pain I am in, I wouldn't have felt it. Gee that was comforting.

    Usually when I am having a bad time pain wise, or health wise, I usually deal with it in a positive way, and really appreciate the little things in life and enjoy myself. I put on my happy mask and therefore ... I become happy. But I found myself a few weeks ago becoming agitated, and it was reflected in some of my posts. You probably wouldn't have even noticed it, but I know when my posts started to change. So I decided to stay way from WHL until I started feeling better physically and mentally. I noticed a few people mentioning that they wished 'Linda was here to make us laugh" Sorry guys, Happy Linda is no where to be seen for the distant future.

    I am really snowed under at school and I am trying to get the reports completed, My school is very supportive of me, and has made so many accommodations. But if I don't get the reports finished, I still have to do them during the holidays, and I am going interstate for a work conference for a week when school closes. I would like to actually have a few days holiday before coming back home and starting the whole planning for the next term nightmare. It isn't going to be easy for me especially if I keep deteriorating, and the doctors haven't found out what is wrong with me.

    I will check in from time to time, but I won't be posting anything for a long time. Sorry guys, but I cannot risk saying inappropriate things, you are all so special to me and you have no idea how happy you make me feel. Bye for now, look after yourselves, live a very healthy lifestyle, and what ever you do, don't let that mask slip... keep it glued on with super glue.
    Hey Linda. I am really glad that you finally decided to come out publicly with what is going on with you. Everyone here loves you and I know they are appreciate finally being able to be of some support. I understand why you are saying what you do but please think about one thing... If there is any place that people understand how we feel on those bad days, how easy it is to get irritated because there is so much going on in our own life that our mouth overrides our a** sometimes it is here. I am worried that if you isolate now things will just get emotionally worse for you but it is your call.

    As always I am here for you and I love you. Let me know if you need me (even in the middle of the night/during your daytime)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Oh Linda what would I want people to say if I knew everything was turning to crap? I think I would want them to say, hold on to your faith, live today to the fullest and anytime you need a shoulder to cry on or to pick you up with some twisted humor, you know where to find me. I haven't known you for long but I have to tell you I am forever blessed having what time I've had with Linda from Australia! I love you and know we will actually meet someday. Xxo Tammy

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    Linda,
    I am so sorry that you are going through so much with your health. As others have said, I wish that you would reconsider about isolating yourself. We all understand the frustrations of dealing with the medical community and we would all be willing to support you when you need to vent. Think about it, and please keep us informed of what is happening.
    I know very well what a stress the end of the term is. Our school always stocked lots of chocolate for the teachers during that awful exam/turn in the grades week. Hang in there and then enjoy your vacation, girl!
    We'll miss you around here, so jump back in when you can.
    Lots of Hugs,
    Marla

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    Linda, I've missed your posts because you always put a positive spin on things. I sure wish you would stick around so that we can support you the way you have supported so many. I don't think anyone here cares if you've got lupus, or foot in mouth disease, or spotted dick (Oh wait, that's a food, not a disease - sorry). What we care about is YOU. I personally hope that you will share with us what the doctors are finding, how you are holding up, and what treatments you are undergoing. As I said to Steve earlier today, you give people a gift when you allow them to care for you and return the love that you have shown. If you aren't up to posting, please keep in touch with someone who can share your progress with us. I will be thinking of you.

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    Well Linda it's deeply shocked me mate and your such a special person and will be missed dearly while your unable to come on...as that laughable inspiration is such a beautiful quality you hold.

    I really hope from the bottom of my heart they can find out what's going on with you, with things progressing so quickly and thank you for coming on and stating what's actually going on with you but please when your able to let we know what's happening and if any progress is being made.

    Your loved deeply and we'll be missing you such alot.

    (((Hugs))) Terry xxxx

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    you know my phone number.....

    USE IT

    even if it is 4;00am like when you wrote this post... use it

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    Best wishes Linda. I sincerely hope that things work out.

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    I posted a whole thing and it just disappeared! : (

    But the gist of it was... DONT GO LINDA! Not for us, not for our sake... because we would have you stay here! We want to be the supportive friends you need right now and we dont mind if you arent at your funniest, happiest... we take the good with the bad : ) But if you need to leave for you, for your health and wellbeing... then we will wish you the best and hope you know when you need us, we are here for you!

    "I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best."
    — Marilyn Monroe

    And Linda, if we can't handle you at your worst... then we sure as hell dont deserve you at your best : )

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