Page 1 of 2 12 LastLast
Results 1 to 10 of 12

Thread: Aloha!

  1. #1
    Join Date
    Jun 2011
    Location
    Oahu, Hawaii
    Posts
    21
    Thanks
    15
    Thanked 21 Times in 9 Posts

    Cool Aloha!

    I was recently diagnosed with SLE. +ANA, dsDNA, Leukopenia, low C3, seizure disorder, Raynaulds, RA, etc.. Although I've been dealing with these symptoms for a long time it feels kind of odd to have a name for them collectively. I think it hasn't quite sunk in yet. I have a lot of questions and can definitely use your advice!
    At this point I am starting to think my docs are nuts. I'm a serious athlete and have hurt myself a bit.. so currently doing physical therapy for my hip and hands and lowered the intensity of my workouts. Did two rounds of cortisone shots on the hands (10 shots in a month)- no results- and these people want me to consider surgery (no way). Started taking plaquenil 2 weeks ago, is this stuff supposed to make you feel better?
    Sooo...the bottom line is pain and substandard performance followed by acute exhaustion.
    I'm considering going gluten free, have started the flax and apple cider vinegar. Eliminated nightshades I'm hoping this will improve things a bit.
    Does anyone tried acupuncture? I'll do anything, help!

    other meds- trileptal, topamax, vicodin, 800mg ibuprofen. doc wants me to start a muscle relaxer and antidepressant for the side effects. Im passing on the latter bc Im not depressed and don't need mood swings. lol.

    Sorry for the long post and thank you for your patience and understanding.
    I'm looking forward to hearing your insights

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,956
    Blog Entries
    1
    Thanks
    1,412
    Thanked 1,641 Times in 1,127 Posts

    Default

    Quote Originally Posted by dawn patrol View Post
    Sooo...the bottom line is pain and substandard performance followed by acute exhaustion.
    welcome dawn patrol.

    for some yes the outlook is not all rosey.
    everyone is different, and lupus attacks us all differently.

    please read through the posts and learn from others. if you cannot find an answer to a question, start a new thread, someone or many of us will try to help.

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

    dawn patrol (06-27-2011)

  4. #3
    Join Date
    May 2011
    Location
    Pennsylvania, USA
    Posts
    882
    Thanks
    409
    Thanked 272 Times in 196 Posts

    Default

    Hello dawn patrol welcome! I know you will get a lot of help here today. Yes...yes. Plaquinil helps a lot. It quiets everything down and though it takes awhile to work, I found it to be a gift. They started me on oral steroids (prednisone) at the same time as Plaquinil, because my joints were inflamed. I was also put on an nsaids. Loved it! I started getting my life back as best I could, after this.

    Many of us have tried all kinds of diets with no luck. We just try to eat healthy, take our meds, balance our stress and juggle all that is necessary to keep out of a flair. I found sleep to heal me tremendously.

    I am on cymbalta to manage the pain and it does help, but I am now tired from it. Depression and mental health issues is part of SLE . This is a little hard to swallow, but it is a fact.

    Many of us have raynauds as well here. Again welcome to a great group of people.

  5. The Following User Says Thank You to lovedbyHim For This Useful Post:

    dawn patrol (06-27-2011)

  6. #4
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Dawn,

    Welcome to our large family of WHL and you'll find so many threads linked to your conditions you've stated and if you ever need to vent come on and do so there's always someone on 24/7 being a worldwide site which is even better.

    I have SLE/Raynauds and seizures like yourself and so many more ailments which came on me at 18 and i'm now 42 and 3yrs ago i was diagnosed with Lupus and was born with this but never knew.

    Well if you think your doc's are nuts i can't say much more for my rheumo, he's a right waste of space.

    I've been back on the plaquenil nearly 3wks and find taking it at night helps me alot better during the next day, it's a drug great for helping your skin and it takes 6mths or just over to get in your system fully and then it helps joints abit.
    I still have a game now getting my head around it constant aching daily, if it's not one thing it's another and refering your apple cider vinegar how are you take it, it's good for cleaning your system out like Garlic but makes you lose weight also...my hubby stopped me having it.

    If your not depressed don't take the tablets but concerning Lupus, it's number one thing it thrieves on his stress and depression and can make you feel symptoms more.

    Don't apologise about the long post, it's nice when member's join they give more history about themselves and it helps member's to answer better, it will be nice getting to know you also.

    Terry xxx

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

    dawn patrol (06-27-2011)

  8. #5
    Join Date
    Mar 2011
    Location
    Montana
    Posts
    499
    Blog Entries
    1
    Thanks
    281
    Thanked 261 Times in 147 Posts

    Default

    Welcome! You've come to the right place. WHL is a group of warm compassionate people who tell it the way it is! Always ask questions, no matter how trivial you think they may be. Lupus is a royal pain and is very frustrating. Not going to lie to you and tell you that it really isn't a big deal because it is. Lupus is like the room mate that won't go away. Some days you hardly notice it and some days it totally takes over your life. Get educated. Learn all that you can about Lupus and coming here is a great start. Be your own advocate. As far as diet is concerned, there is no "lupus diet". Eating healthy is a good thing weather you have lupus or not. There hasn't been any particular diet or food proven to help improve or cure lupus. If you find one that does, run the other way. In your discoveries about lupus you'll find there are a lot of quacks out there promising a cure for lupus. Remember, there is NO cure at this time so don't buy into any of that. If you find something that intrigues you, bring it to the forum- we'll tell you if it is valid or not. Again, we tell you the way it is. Being a serious athlete does give you an edge in the respect that you already understand your body. You'll know what is working and what isn't. The plaquinel can take 4-6 months to have any effect so patience is a must. As far as your doctors are concerned, well they could be nuts or they could just be frustrating. A good relationship with your doctor is also a must. You are partners in the lupus war. If you really don't have a good connection, then find a doctor you feel comfortable with. You may have to go through a few, but it will be worth it.
    Stay in touch and again, welcome!
    "I'm going to get healthy or die trying"

  9. The Following User Says Thank You to ruziska For This Useful Post:

    dawn patrol (06-27-2011)

  10. #6
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by Peridot20_Gem View Post
    Well if you think your doc's are nuts i can't say much more for my rheumo, he's a right waste of space.
    Hah! Maybe I'll try saying that to the next doctor who's a jerk, but I'll have to work on my British accent: "You're a right waste of space!" Oh wait, I was the one who said we should be polite to our healthcare providers, wasn't I. Never mind. I'll just say it in my head, but definitely with a British accent!

  11. The Following User Says Thank You to Gizmo For This Useful Post:

    dawn patrol (06-27-2011)

  12. #7
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by Gizmo View Post
    Hah! Maybe I'll try saying that to the next doctor who's a jerk, but I'll have to work on my British accent: "You're a right waste of space!" Oh wait, I was the one who said we should be polite to our healthcare providers, wasn't I. Never mind. I'll just say it in my head, but definitely with a British accent!
    Gizmo,

    I've told doctors to their face and sometimes if i've got high rated with them the verbal as been let lose...that's why they've throwed me off their books.
    What get's me is why practice in something and go the full extreme when all they want to do is fob you off, it gets me mad.

  13. #8
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Welcome Dawn Patrol! Your post isn't long at all, and as Peridot said, the more info you give the more help everyone can offer.

    Being a serious athlete this has got to be really challenging. You've already discovered that you have to ease back, and that may not change, even when the plaquinil kicks in. You need your body to last for many more years, so even if you have the mental toughness to push through the pain, you probably shouldn't.

    What sports do you do? Are you out in the sun a lot? I think it would be torture to live in paradise and not be out on the beach all the time. If you are photosensitive, investing in sun protective clothing is essential. They make swimsuits that cover you from neck to ankle, sun gloves, even face masks.

  14. #9
    Join Date
    Jun 2011
    Location
    Oahu, Hawaii
    Posts
    21
    Thanks
    15
    Thanked 21 Times in 9 Posts

    Default

    Thank you, everyone, for the warm welcome! It's wonderful to join a group of such caring individuals. Most of the time I'm a housewife and mother but I'm also a surfer. I ride for a small company based on the north shore of Oahu. I help promote brand awareness by getting out there in the water an average of 5 days a week, 2-3 hour sessions. I also started paddleboarding recently. It's super fun, I've even been putting my pomeranian on the board with me I swim a 500 2x/week and jump on an elliptical 2x/week @night. Many days these things overlap.. I get tired yet have insomnia! Since my mom got a small skin cancer lesion on her face removed a few years ago we've all been religious about using sunscreen. When it comes to protective sun clothing <cough> Im usually out there in a bikini.
    Today, though, I wore a hat and rashguard. Ugh.

    "You need your body to last for many more years, so even if you have the mental toughness to push through the pain, you probably shouldn't."

    That is some wise advice, Gizmo. I'm hoping to be at 100% in a few weeks but if I don't take it easy it'll never happen.
    However, in the end--it's a beautiful day, the sun is shining and I still got to surf in good company. Life's good.

  15. The Following User Says Thank You to dawn patrol For This Useful Post:

    Peridot20_Gem (06-27-2011)

  16. #10
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Dawn,

    Your welcome mate and suffering like yourself we know what your going through and help in best ways possible.

    Well i really love your determination on keep going well and all the sports your still doing, all i can say is don't get over doing it to much and put to much pressure on your body but as long as it makes you happy keep going.

    You do need to watch the heat carefully, that's why i expressed just about pressuring your body as the UV rays can hurt you also and if you ever feel irritated by your skin the shades the first spot besides covering up.

    Well at least your enjoying yourself..it's been 90 here today and it's murdered me, i can't go out in it banned from the dermo and inside with windows open ain't much cooler.

    Hugs Terry xxx

Posting Permissions

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