Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 28

Thread: Do or I don't I?

  1. #11
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    I Just wanted to pop in and welcome you to the site. I have to agree with Gizmo about staying out of the sun and florescent lights as much as possible. She gave you some excellent advice in case you have to go out in it. Just a trip to the grocery store can send us into a flare. It sounds simple but it is a really an important thing.

    The other thing I wanted to say is try not to put a name on every symptom. It does sound suspicious for Lupus or another AI disease so it is a good thing it is being looked into. As you may or may not know, there is no actual test for Lupus. There is a "sticky" (top of every thread) in the Newly Diagnosed section that talks about how Lupus is diagnosed. It is often diagnosed by finding out what you don't have as much as by what you do have. As Gizmo said, AI diseases tend to run in groups so try not to get bogged down with names of what each symptom means. Keep a journal of symptoms. Get a copy of your medical records (including all test results). Be prepared. Be your own advocate. Whether it is Lupus, another AI disease or something completely different you have to become your best advocate. You know that something is wrong and you have a right to find out what it is!

    We are here if you have any questions or just need to vent. Welcome to the WHL Family!

    I am glad that you join
    Mari

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

    ~Winston Churchill~







  2. The Following User Says Thank You to tgal For This Useful Post:

    Shaztwirl (05-31-2011)

  3. #12
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,913
    Blog Entries
    1
    Thanks
    1,393
    Thanked 1,616 Times in 1,106 Posts

    Default

    welcome Shaztwirl,

    your story sound similar to many of us.
    finding out what is wrong can be easy, or a long drawn out proccess.
    unfortunatelly ther eis not simple test for many of the auto immune problems.

    the rhuematologist is a good specialist to see. he specialises in problems like what you are going through.

    please take the time to read a few of the other threads. ther eis a lot of useful information available.

    again welcome.

  4. The Following User Says Thank You to steve.b For This Useful Post:

    Shaztwirl (05-31-2011)

  5. #13
    Join Date
    May 2011
    Location
    Ireland
    Posts
    54
    Thanks
    18
    Thanked 6 Times in 4 Posts

    Default

    Thanks everyone for the welcome. Believe me, I don't want to label anything. I certainly don't want Lupus or TMJ or Fibromyalgia or anything else for that matter. All I really want is to know that there IS something wrong with me and that I'm not going mad! Although there are some would say I went mad years ago LOL! I'd like to get up in the morning after 8 hours sleep (which I had last night) and actually feel like I've rested. I want to be able to strip my bed in the knowledge that I'll have the strength to put on fresh bedlinen. I want to be able to take the kids to school and not be exhausted at 9am for the rest of the day. Actually, turns out the list of things I want is really rather long. I'm sure it's the same with all of you. I shouldn't go on any anymore cos I'm having a really bad day and will probably just sit here and cry! I used to type 60 wpm with no errors. It's terrible spending 10 minutes or more typing a short paragraph cos your fingers and brain are working at different speeds and sometimes not at all LOL. Thanks again for the welcome. It's good to know that I'm not alone xx

  6. #14
    Join Date
    May 2011
    Posts
    54
    Thanks
    13
    Thanked 10 Times in 5 Posts

    Default

    Your story reads exactly like I would have written mine. I too have felt that lightbulb go off...and started thinking about years that have passed when people bagged on me and even got angry at me for being sick all the time, being forgetful, etc. It is a sort of validation, IMO. But at the same time i go back and forth...because i do not want to claim this illness at all. I believe it's part of the grieving process for me and probably for a lot of others also. It's one day at a time and learning to readjust. I'm in my infant stage as far as learning about lupus and I am still not sure what all of my DX's are...but the newbies will learn together and we will get our lives back...right?

    It's good that you are here because there is a wealth of info no matter where you turn and since i have joined, everyone has been very nice and helpful. It's funny how you can gather strength from complete strangers. But it works!!!! So welcome to the boards....i think you will like it here!
    I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

    -Gilda Radner

  7. #15
    Join Date
    May 2011
    Posts
    54
    Thanks
    13
    Thanked 10 Times in 5 Posts

    Default

    Quote Originally Posted by Shaztwirl View Post
    Thanks everyone for the welcome. Believe me, I don't want to label anything. I certainly don't want Lupus or TMJ or Fibromyalgia or anything else for that matter. All I really want is to know that there IS something wrong with me and that I'm not going mad! Although there are some would say I went mad years ago LOL! I'd like to get up in the morning after 8 hours sleep (which I had last night) and actually feel like I've rested. I want to be able to strip my bed in the knowledge that I'll have the strength to put on fresh bedlinen. I want to be able to take the kids to school and not be exhausted at 9am for the rest of the day. Actually, turns out the list of things I want is really rather long. I'm sure it's the same with all of you. I shouldn't go on any anymore cos I'm having a really bad day and will probably just sit here and cry! I used to type 60 wpm with no errors. It's terrible spending 10 minutes or more typing a short paragraph cos your fingers and brain are working at different speeds and sometimes not at all LOL. Thanks again for the welcome. It's good to know that I'm not alone xx
    Oh goodness. I FEEL what you are saying here.

    I just wanted to add that for years I was also told everything I had was a viral infection. I've had the "flu" so many times I cannot recollect the the exact number i was told that. I was written RX's for antibiotics so much...I'm pretty sure most antibiotics would have little or no effect on me if I do come down with a bacterial infection. smh I was finally diagnosed with Fibromyalgia, degenerative disc disease...and wow...for the life of me I can't remember the other one. Can you believe that? lol Brain fog is the pits. lol Hang in there, girl.

    And yep, go on as much as you'd like. I think you can feel safe when you come here to vent. In all honesty...no one is going to understand you like each and every person here. That's just the fact of the matter and although the ideal situation would be for our closest friends and family members to understand....your illness will be hard for them to wrap their minds around at times because they don't walk in your shoes. When that happens...come here.
    I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

    -Gilda Radner

  8. #16
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Shaztwirl,

    We all feel the same as you and it either makes we angry or sometimes cry and i really do hope it's nothing serious for you but if you do have anything show it's a life of adjusting, i only told my hubby lastnight that this lot is eating away at me and making me angry in myself.

    I FEEL STRIPPED OF MY LIFE

  9. #17
    Join Date
    May 2011
    Location
    Ireland
    Posts
    54
    Thanks
    18
    Thanked 6 Times in 4 Posts

    Default

    You are all very kind. I don't like to moan but it's nice that I can do here. I've been searching my mind for 2 days now for a word . . . for what I'd like to happen. VINDICATED!!! I found it LOL Got all the signs today of Carpel Tunnel. Haven't been treated for that for over 4 years. Serves me right for typing such a long intro yesterday. Looks like I'm justified in not changing the beds today after all. Every cloud has a silver lining, isn't that what they say? LOL. I've decided to go with the laughing at myself option rather than the crying option. Although the kids think I'm mad whichever option I choose. I hope you are all enjoying a day as free from pain as possible xx

  10. #18
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello shaztwirl,

    So you found you word vindicated so you don't feel blame as you've justified yourself, very good comment actually.

    Well carpel tunnel is'nt one thing i have, so therefore i don't know what your going through and it does'nt serve you right for stating what's been happening and also what you've been going through and changing the beds won't hurt for one day unless they seriously dirty. lol
    Well you keep to your laughing option and i'll stick to my crying option, i don't have much choice half the time being a manic depressive and it seems to last longer lately.

    Well i'm still drugged had to take valium lastnight it keeps my head carm but with pulling out of it with my other meds is a total nightmare but besides everything you've said i still hope your day is on an even track.

    Terri xxx
    Last edited by Peridot20_Gem; 05-31-2011 at 07:09 AM.

  11. #19
    Join Date
    May 2011
    Location
    Ireland
    Posts
    54
    Thanks
    18
    Thanked 6 Times in 4 Posts

    Default

    Oh Terri, I really feel for you with your depression. If I added up all the time I've spend on anti-depressants, it would add up to a good number of years. They were my best friend for a long time. I'm working hard on not becoming depressed and making myself carry on as much a normal life as I can. My carpel tunnel symptoms seem to have disappeared as quickly as they came. 3 hours was long enough for them! Back to the sore joints, headaches and purple hands/fingers for now. Even my mother suggested buying some white gloves today, which is something I've seen mentioned in one of the other threads. I've decided though to change ONE bed today. Mine of course. I deserve it. Wishing you well.
    Sharon xx

  12. #20
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Sharon,

    Thanks for letting we know your name.

    I feel for myself with the misery of it, like yourself took anti-depressants for over 25yrs, well lets say i've took a right cocktail and the pharmacy, they can put me on some, say it's 2 tablets a day oh my personality does boost up and within a short time i drop back and need more, so my psychiatrist won't allow it no more, mind you he's a brilliant bloke. With manic depression it does hit you out the blue and it's a living nightmare, withdraw symptoms, not wanting to do anything, you more or less give up until it over rides but with everything i'm going through i'm feeding severn trent at the moment refering crying and really no one should be getting bills. lol
    I can't definitely say but if you've got purple hands that's raynauds because my fingers go like that, i'm typing now in white cotton gloves, i buy them from over the road as we have a shop for dying your hair all that stuff and they sell for 2-95 and i by a fresh pair every week but if you put cream on your hands before the moisture makes your fingers more warm.
    Sore joints is another issue knees, fingers and knuckles swollen and red and it travels through my body, they offered me prednisone to take the swelling down but being a steriod i refused but the drug counter reacts with my tegretol anyway.
    We all understand about the heachaches they're murder at times, years back to numb my head i used to hit it against the walls in the home, i've stopped it now and that might sound bad but it numbed the front of my head.

    Well i hope changing your bed goes well mate and enjoy your day the best you can.

    All my love Terri xxx
    Last edited by Peridot20_Gem; 05-31-2011 at 07:25 AM.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •