Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 23

Thread: Just Introducing Myself

  1. #11
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    Quote Originally Posted by BonusMom View Post
    Welcome to the WHL family. As you've discovered, people are pretty ignorant when it comes to AI diseases. I work with people with advanced degrees yet they thought Lupus was related to AIDS.

    Dumb, dumb, dumb....
    One of my best friends at the time of my diagnosis loudly stated in front of my entire class that lupus was like AIDS and it made me thoroughly PO'd. People are so stupid.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  2. #12
    Join Date
    Jun 2011
    Location
    Indiana, USA
    Posts
    288
    Blog Entries
    1
    Thanks
    73
    Thanked 113 Times in 86 Posts

    Default

    Quote Originally Posted by BonusMom View Post
    Welcome to the WHL family. As you've discovered, people are pretty ignorant when it comes to AI diseases. I work with people with advanced degrees yet they thought Lupus was related to AIDS.

    Dumb, dumb, dumb....

    I've noticed that the people who think it's related to AIDS or that all Autoimmune is like AIDS think that AIDS stands for Auto - Immune - Disease. (As if the S is there for no reason )


    And Linda - That's Horrible! It's bad enough to think that, but what on Earth would possess you to go up to someone with the disease and tell them about what they have, and that it's something that simple?? She must've felt like a real arse when you told her what it really meant!

    Sometimes I wish people would just keep their mouth shut when they have no idea what's going on, and then go home and do some learnin'!

  3. #13
    Join Date
    Mar 2009
    Location
    Dallas, Tx
    Posts
    1,859
    Thanks
    145
    Thanked 411 Times in 337 Posts

    Default

    Hi Elo,

    Welcome, I am glad that you have joined us.
    Like the others said, many people here are not yet diagnosed, but everyone is welcome.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  4. #14
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Elo,

    Welcome to our lovely family of WHL and so nice to have you with us, wheather your waiting blood results or still trying to find out if you do have Lupus as the symptoms can be so strong at times, outsiders don't understand only those suffering and you've come to the best possible people to help you.
    I've got A1 Diseases overlapping Autoimmune Diseases and it would help us all if you could give us some light into what your suffering, we're not Doctor's but we all have alot in common with diifferent diseases related to it.

    Have you seen your doctor to get refered to a Rheumo specialist??...to try and help you.

    Venturing through the threads you'll learn so much regarding Lupus and anytime you need to vent there's always some one on 24/7 who will help the best they can.

    It will be nice getting to know you Terry xxx

  5. #15
    Join Date
    Jun 2011
    Location
    Indiana, USA
    Posts
    288
    Blog Entries
    1
    Thanks
    73
    Thanked 113 Times in 86 Posts

    Default

    Quote Originally Posted by Peridot20_Gem View Post
    Hello Elo,

    Welcome to our lovely family of WHL and so nice to have you with us, wheather your waiting blood results or still trying to find out if you do have Lupus as the symptoms can be so strong at times, outsiders don't understand only those suffering and you've come to the best possible people to help you.
    I've got A1 Diseases overlapping Autoimmune Diseases and it would help us all if you could give us some light into what your suffering, we're not Doctor's but we all have alot in common with diifferent diseases related to it.

    Have you seen your doctor to get refered to a Rheumo specialist??...to try and help you.

    Venturing through the threads you'll learn so much regarding Lupus and anytime you need to vent there's always some one on 24/7 who will help the best they can.

    It will be nice getting to know you Terry xxx

    I started getting sick in November of last year. Actually, that's not true, I never "started" getting sick, I just woke up one day feeling extremely tired and achey, nauseous, and weak. And then it just never stopped. After about two weeks I started to worry, and after a month or so I was really worried. Due to a fear of doctors and lack of insurance (I'm underage and the daughter of a single mother who couldn't really afford health insurance), I put off going to the doctor until 2 months in, when my boyfriend whom I live with finally convinced me to go to a clinic. They ran some basic tests - Urinalysis, basic blood stuff looking for anemia and blood count, blood pressure and etc, but couldn't find anything except that I had a moderately high white blood cell count. They thought it was just stress.
    But anyways, that's not really important. The important thing is that that Dr. was the first of what seemed like many, most of whom were either jerks, or didn't believe I was actually sick (sometimes both).

    Right now my symptoms are mainly fatigue (I sleep about 10-12 hours a night, and still take a 3 hour nap or two every day, and am crazy tired by the time bedtime rolls around), weakness (sometimes even lifting a spoon seems heavy, and I try to avoid lifting anything heavier than a milk jug), Abdominal pain, stomach aches, nausea, chest pain (my doctors for some reason are absolutely convinced that this is heartburn, even though it doesn't always occur when I eat, has no pattern, is on the right side or center of my chest, feels nothing like heartburn, and isn't helped by tums, pepto bismol, nexium, or omeprozole). Shortness of breath, mainly with the chest pain. Easy bruising and lately i've been extremely sensitive - you can poke me and it'll hurt and ache for a few minutes. Oh, also headaches. They come and don't go away for days on end. Then of course the muscle weakness and soreness, joint pain, and brain fog. My cognitive skills tend to fade a lot, especially when I use them above a certain limit. If I do anything that takes much brain power (even looking up AI diseases), after about 30 minutes I can't comprehend much of anything and get extremely tired. Plus a lot of confusion and problems connecting at times.
    My symptoms get worse and I become more sick when I exercise, and I've noticed also when it's hot and humid.

    I used to have panic attacks when the pain (chest/abdominal) got really bad, and I got scared because I didn't know what it was or what I could do, but i'm now on a mild antidepressant and that has stopped.
    That's about it. I have no skin involvement, so that rules out a lot of AI diseases, I'm not anemic, and my thyroid isn't underactive (not sure if it's overactive or not).

    My doctor ordered some blood tests to be done, and based on the ANA she told me that I have a low level connective tissue disorder/autoimmune disease. She told me that eventually I would need to see a rhuematologist, but that since I didn't have insurance, it would be too expensive for me and that there wasn't much point in going to get diagnosed with something specific because it wouldn't make much of a difference either way. She had me go on fish oil, vitamin D, and stick with my antidepressant Citalopram, and then suggested I check out an anti-inflammatory diet to help cut down inflammation and hopefully pain.

  6. The Following User Says Thank You to Elo For This Useful Post:

    Peridot20_Gem (07-03-2011)

  7. #16
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by Elo View Post
    I started getting sick in November of last year. Actually, that's not true, I never "started" getting sick, I just woke up one day feeling extremely tired and achey, nauseous, and weak. And then it just never stopped. After about two weeks I started to worry, and after a month or so I was really worried. Due to a fear of doctors and lack of insurance (I'm underage and the daughter of a single mother who couldn't really afford health insurance), I put off going to the doctor until 2 months in, when my boyfriend whom I live with finally convinced me to go to a clinic. They ran some basic tests - Urinalysis, basic blood stuff looking for anemia and blood count, blood pressure and etc, but couldn't find anything except that I had a moderately high white blood cell count. They thought it was just stress.
    But anyways, that's not really important. The important thing is that that Dr. was the first of what seemed like many, most of whom were either jerks, or didn't believe I was actually sick (sometimes both).

    Right now my symptoms are mainly fatigue (I sleep about 10-12 hours a night, and still take a 3 hour nap or two every day, and am crazy tired by the time bedtime rolls around), weakness (sometimes even lifting a spoon seems heavy, and I try to avoid lifting anything heavier than a milk jug), Abdominal pain, stomach aches, nausea, chest pain (my doctors for some reason are absolutely convinced that this is heartburn, even though it doesn't always occur when I eat, has no pattern, is on the right side or center of my chest, feels nothing like heartburn, and isn't helped by tums, pepto bismol, nexium, or omeprozole). Shortness of breath, mainly with the chest pain. Easy bruising and lately i've been extremely sensitive - you can poke me and it'll hurt and ache for a few minutes. Oh, also headaches. They come and don't go away for days on end. Then of course the muscle weakness and soreness, joint pain, and brain fog. My cognitive skills tend to fade a lot, especially when I use them above a certain limit. If I do anything that takes much brain power (even looking up AI diseases), after about 30 minutes I can't comprehend much of anything and get extremely tired. Plus a lot of confusion and problems connecting at times.
    My symptoms get worse and I become more sick when I exercise, and I've noticed also when it's hot and humid.

    I used to have panic attacks when the pain (chest/abdominal) got really bad, and I got scared because I didn't know what it was or what I could do, but i'm now on a mild antidepressant and that has stopped.
    That's about it. I have no skin involvement, so that rules out a lot of AI diseases, I'm not anemic, and my thyroid isn't underactive (not sure if it's overactive or not).

    My doctor ordered some blood tests to be done, and based on the ANA she told me that I have a low level connective tissue disorder/autoimmune disease. She told me that eventually I would need to see a rhuematologist, but that since I didn't have insurance, it would be too expensive for me and that there wasn't much point in going to get diagnosed with something specific because it wouldn't make much of a difference either way. She had me go on fish oil, vitamin D, and stick with my antidepressant Citalopram, and then suggested I check out an anti-inflammatory diet to help cut down inflammation and hopefully pain.
    Hello Elo,

    Thanks for explaining to we your symptoms but at least your boyfriend got you started in one way and mentioning doctor's some are a right load of rubbish and with lupus it can give off false reading's, i was lucky they got the lot with me after draining the life out of me refering my blood but took 6mths to show itself properly for the aneamia besides i had it a good while ago.

    That's a good sign of anything related to Lupus the 10-12hr shifts you sleep besides in between when you can and the fatigue is terrible it's like an idol feeling which flustrates your head when you've not always been that way.
    Refering your chest pain i've got that and the shortness of breath besides the muscles around my lungs swollen and when i saw my gp he felt my back as the swelling was like a form of a lump and he said the lupus is going mad with you and now i've just been added to another steriod inhaler to help. They should be checking your breathing by testing you and also running a test for lung diseases.
    I've just read the rest of your symptoms, as you know we're not doctor's and can only help and reading helps your knowledge concerning it but you can't think to yourself i've got this disease or i have that disease until tests are run but this is me saying this from what you've said i'd say your definitely Lupus linked as your going through to many issues not to be.
    Try to avoid direct sunlight and sit in the shade and wear sun bloke and clothes that cover you up besides hat and glasses i know it sounds extreme but if the sun starts intefering with you a possible flare could happen until you find out, it's such a pitty also that you can't be refered to a Dermo as they soon run bloods to find out.

    Just say you have Lupus and your bloods are not showing results...aneamia makes you bruise quickly, you may have thyroid trouble and it's not showed and refering your skin involvement, you say the heat just being hot and humid can affect you, a flare does'nt always start straight away and some people don't get them just the heat alone makes them ill.
    Lupus itself thrieves on stress and depression, i'm a manic depressive and there's hardly a day go by without me crying, it really can drag you down knowing how active you was.

    I know your doctor is helping in otherways but in one way you do need to find out what autoimmune disease you have because medication can help you live a better life, sometimes the meds have to be altered, i'd just have another chat to see what he/she thinks about it again.

    Thank you again for sharing your history and if anything occurs with you besides and are'nt sure just had a thread and one of we will answer as soon as possible.

    Hugzzzzz you way Terry xxx
    Last edited by Peridot20_Gem; 07-03-2011 at 01:57 PM.

  8. The Following User Says Thank You to Peridot20_Gem For This Useful Post:

    Elo (07-03-2011)

  9. #17
    Join Date
    Jun 2011
    Location
    Chicago
    Posts
    255
    Thanks
    27
    Thanked 82 Times in 69 Posts

    Default

    Elo - I am not dx'ed yet, so we'll wait together eh?

  10. The Following 3 Users Say Thank You to Manderson For This Useful Post:

    Elo (07-03-2011), Peridot20_Gem (07-03-2011), tgal (07-03-2011)

  11. #18
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by Manderson View Post
    Elo - I am not dx'ed yet, so we'll wait together eh?
    Oh Marie...now what a lovely comment in support for you both. "Fantastic & so sweet"

  12. #19
    Join Date
    Jun 2011
    Location
    Indiana, USA
    Posts
    288
    Blog Entries
    1
    Thanks
    73
    Thanked 113 Times in 86 Posts

    Default

    Quote Originally Posted by Peridot20_Gem View Post
    Hello Elo,

    Thanks for explaining to we your symptoms but at least your boyfriend got you started in one way and mentioning doctor's some are a right load of rubbish and with lupus it can give off false reading's, i was lucky they got the lot with me after draining the life out of me refering my blood but took 6mths to show itself properly for the aneamia besides i had it a good while ago.

    That's a good sign of anything related to Lupus the 10-12hr shifts you sleep besides in between when you can and the fatigue is terrible it's like an idol feeling which flustrates your head when you've not always been that way.
    Refering your chest pain i've got that and the shortness of breath besides the muscles around my lungs swollen and when i saw my gp he felt my back as the swelling was like a form of a lump and he said the lupus is going mad with you and now i've just been added to another steriod inhaler to help. They should be checking your breathing by testing you and also running a test for lung diseases.
    I've just read the rest of your symptoms, as you know we're not doctor's and can only help and reading helps your knowledge concerning it but you can't think to yourself i've got this disease or i have that disease until tests are run but this is me saying this from what you've said i'd say your definitely Lupus linked as your going through to many issues not to be.
    Try to avoid direct sunlight and sit in the shade and wear sun bloke and clothes that cover you up besides hat and glasses i know it sounds extreme but if the sun starts intefering with you a possible flare could happen until you find out, it's such a pitty also that you can't be refered to a Dermo as they soon run bloods to find out.

    Just say you have Lupus and your bloods are not showing results...aneamia makes you bruise quickly, you may have thyroid trouble and it's not showed and refering your skin involvement, you say the heat just being hot and humid can affect you, a flare does'nt always start straight away and some people don't get them just the heat alone makes them ill.
    Lupus itself thrieves on stress and depression, i'm a manic depressive and there's hardly a day go by without me crying, it really can drag you down knowing how active you was.

    I know your doctor is helping in otherways but in one way you do need to find out what autoimmune disease you have because medication can help you live a better life, sometimes the meds have to be altered, i'd just have another chat to see what he/she thinks about it again.

    Thank you again for sharing your history and if anything occurs with you besides and are'nt sure just had a thread and one of we will answer as soon as possible.

    Hugzzzzz you way Terry xxx
    Thanks so much for listening and taking my symptoms into consideration When I was sick and still had no idea what the problem was, my mother suggested I look up autoimmune diseases, since everything else I looked up just wasn't making any sense or fitting. The first AI disease I stumbled across was lupus, and I immediately thought "Wow. That's me, without the skin issues!". It's been a few months since then, and I'm still feeling like that's what it is- or at least it's a huge possibility. I know it could also be MCTD, or something else, but Lupus is definitely something that I resonate with having.
    I, too was (and am) battling with depression when I got sick. I hated not being able to do anything, not being able to go anywhere. The highlight of my week was going to the grocery store (even though sometimes i'd find myself standing in the middle of the isle, eyes glazed over, feeling dizzy and confused and like I was going to tip over at any second). And if I didn't go outside on a short walk at least every other day, I'd get stircrazy and pissed because I felt trapped. Thankfully, the antidepressants I'm on have definitely helped with that, and even though I still feel like an invalid sometimes, i'm doing better. I'm glad I'm on them, because I know i'm still in shock from my doctors (minimal) diagnosis, and if I didn't have them, I have a feeling i'd be drowning.

    Dealing with manic depression is really hard, and I can't imagine how hard when you have so many more reasons to be depressed and upset than a lot of people. But from what i've seen in the forums, you have a great family, so I hope they help you with that


    Manderson- indeed we will! (:

  13. The Following User Says Thank You to Elo For This Useful Post:

    Gizmo (07-03-2011)

  14. #20
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,899
    Blog Entries
    1
    Thanks
    1,387
    Thanked 1,610 Times in 1,102 Posts

    Default

    i read you list of symptoms,and then re read them.
    it was like you were describing mine.

    i have been diagnosed with lupus and fibromyalgia.

    i reccommend going to a rhuematologist. i know the financial situation.
    but i have been on medication for about 3 years, and the difference is increadable.
    my lupus is being controlled by my meds.
    unfortunatelly, my fibro is not yet under control.

    is there any way to apply for a discount ?
    is there a rhuemy that does "social work".

    i used to be very proud, and would not think of asking for a discount.
    i used to earn $160,000 a year.
    now i am on disability and earn about $50,000 and have to support my family as well.
    i ask for discounts, even when i go grocery shopping.

    it is not about finding a name for your problem, even though that helps.
    it is about finding a way to survive.
    it is about finding a way to gain a little control.

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

    Elo (07-03-2011)

Posting Permissions

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