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  1. #1
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    Default Hello

    I everyone, I'm new to this site and Lupus, I was just diagnosed a couple of months ago. Just looking for new information and to chat.

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    Welcome, Onpointe. I think you'll find a lot of good information and some sympathetic listeners here. Jump in anywhere on the forum; tell us a little about yourself so folks can share things relevant to your experiences. We're all in this together!

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

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    Default Welcome

    Hello and welcome! This is a wonderful place to find support and information. I hope you are feeling well today.

    Jana

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    Default Thanks for the welcome! :)

    Hello,

    Thank you for the kind words, I am looking forward to getting to know you. Here's a little about me...

    I'm 32 and live with my husband of almost 10 years (Feb 21st) in Oregon. I have a step-son who lives in Nebraska that is 13, we are in the process of trying to get custody of him which I really hope we do, he's a great kid! We also have lots of cats, all strays that we've taken in and they are all fixed, we feel there are too many that need homes as it is. We also have a really fun dog named Chloe. Sadly, I was unable to carry any babies to term and decided to have a hystorectomy last year. I thought that would greatly help my health but as it turns out the meds I was on for my endometriosis and other problems were masking other symptoms that started showing up after my surgery and when Ino longer need those medications. My team of doctors has spent the last year and a half doing every test under the sun and finally sent me to a rheumatologist. My ANA has come back positive three times now, my SED rate has been off the charts (although I don't know what it is) and my CRP came back at a 28! This plus my skin rash on my arms and cheeks, frequent low grade fevers, and joint and muscle pain has lead them to the conclusion that I have SLE. Well, for now that's what they think, they know I have an AI for sure and they think Lupus fits my symptoms best, they have put me on Hydroxychloriquine (sp) I know it's generic for a drug that I'm sure you are all familair with, I've only been on it for a few months and honestly have had a hard time getting used to taking it twice a day, I'm getting better about it though. My Dr. wants to give it a good six months to see if it helps. So far it hasn't. I don't know what's going on honestly. Now that I've been researching SLE I am starting to realize that I've had symptoms for a loooooooong time, just a bunch of little things that I never thought were part of a bigger issue. My aversion to the sun and frequent fevers started when I was about 13! Things have gotten worse over the past year though, I don't know why but I've taken a major dive these last few months! I've been dealing with lots of stress which I've heard can cause flare ups (BTW if any of you see that I'm using words incorrectly or have any thoughts on my condition please feel free to let me know, I would appreciate any and all feedback. oh, and I'm the worlds worst speller so I apologize in advance!) So to get back to what I was saying, my Dr. with go as far as saying "I think you have SLE", not "You have SLE", for some reason this is bothering me even though he's pretty much saying the same thing and I saw his chart notes on my last visit and it said he was treating me for SLE and Fibromyalgia. Has this been the case with anyone else? Oh, I guess I should mention that I also have Sphincter of Oddi Dysfunction with bouts of pancreatitis, pernicious anemia, gastroparesis and NASH, quite a mess huh! Oh and in the last year I've had SEVERAL bouts of Mesenteric Adenitis which mimics Appenicitis, I seem to be getting this when I have a flare up along with migraines. Super fun! I'm in the process of trying to get SSI, I applied before I had my surgery and before I was diagnosed with SLE (or kind of diagnosed???)and was denied, I hired an attorney and am now just waiting for my hearing which should come up by next August, we could really use the money and I paid into the system so I will be greatly disapointed if I don't get it, I don't really know what my chances are either, has anyone been down this road?

    Outside of letting this define me, which I really hate that is seems to be doing, I am one of Jehovah's Witnesses, thankfully! I really don't know how I would deal with all of this without Jehovah God! In what seems like a lifetime ago I studied ballet and I was in the Marine Biology field for a time, I've done volunteer work at several aquiariums and workd at Sea World for a time, I thought I wanted to go into dolphin training but didn't like what I saw, I'm glad I tried it though or it would have been one of those "What if's" in my life.

    This slow but steady decline in my health has been hard, I was supposed to be "dolphin girl" and now I can barely get out of bed. It's also been rough for my husband, he's very afraid right now and I don't know how to comfort him, he's a wonderful man though and I'm so grateful to have him. The other thing that has been difficult is feeling like no one beleives how sick I feel (outside of my hubbie), my mother thinks that if I just get a little fresh air this will all go away and most people say things like "you don't look sick", it drives me nuts! If I had cancer they would be more understanding but I'm finding that most people don't really know what Lupus is or how much my health has declined.

    Anway, that's the scoop on me, if anyone can relate or let me know what you think of my symptoms I would greatly appreciate the feed back. As I am new to all of this I don't know how much support I can lend but if anyone just needs to talk please feel free to write, I'll help in anyway that I can.

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    Whew! You're dealing with a lot, Onpointe. So much of what you're going through will ring bells with lots of folks on this forum. First, diagnosis: it's perhaps one of the most frustrating thing about SLE (any AI for that matter, but SLE in particular.) The symptoms of SLE can also be symptoms of other diseases. And for most of us, the symptoms are a moving target, as are the lab results. Some of us have lots of symptoms and no positive lab tests; some have positive test results and minimal symptoms. Get the picture? It can take years...literally...to diagnosis SLE. But, a good rheumatologist will treat symptoms appropriately, even if the SLE label hasn't been pinned down. The drug you mention is often referred to by the trade name Plaquenil. Many of us are on it (me, too.) It takes a while to 'kick in' so be patient. It will probably help with some of your symptoms.

    There are a couple of things you can do to learn about SLE. First the Lupus Foundation of America has a pretty good website with a lot of info about diagnosis, treatment, medications, etc. Go to www.lupus.org.

    Dr. Daniel Wallace has a book that I know many on this forum have recommended. It's called "The Lupus Book: A Guide for Patients and their Families." It's really first-rate. I use it all the time; refer back to it often.

    Then, there's the "butyoudon'tlooksick" website! It has a wonderful essay called "The Spoon Theory" that is a great way to explain to others what it's like to live with SLE (or most any chronic illness, really.) http://www.butyoudontlooksick.com/the_spoon_theory/

    There are others here who have fought the SSI battle, and I'm sure they'll jump in with some information and encouragement. That's not an easy road, either.

    So, welcome to the group! I'm glad you found us. I know you'll learn a lot here - I sure have.

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

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    Default Thanks so much!

    I am so glad you responded! Thank you for all the wonderful information, this is exactly what I am looking for. I also appreciate that others can relate to my story, of course I wish that no one has to deal with this but the reality right now is that we do and I'm glad I found my way here too!

    It's nice to know that I'm not the only one dealing with the "you don't look sick" issue! I'm glad that I look healthy but I'm also worried that it will hurt my SSI case, all I can do is be as honest as possible at my hearing, I hope that who ever is hearing my case really has a grasp on the fact that some very sick people don't look like it.

    Thanks for the information about the meds, glad to know that others have dealt with the wait and see on this med as well!

    Thanks again, if you get a chance please tell me your story and how you are doing.

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    Onpointe...

    Just a quickie response...

    First welcoming you with open arms. Tight squeeze.

    I wanted to chime in a say my experience with Plaqunil did wonders for my joint pain and tamed my facial rash down to a tinge of pink. When I flare, it does too.

    Currently, I use a steroid cream for my hinder rash, gone, belly rash..and thankful. I've been posting about the scabs on my hinder for over a month or two and a patch on my tummy, well it is looking like a gut again.

    Cream is: Triaminolone Acetonide Cream USP, 05%

    Since starting new antibiotics a few days back my malar lite up, coming out of a half..ahem intermission now into a full time flare...I dabbed a small amount of the cream on, loving it. Too much of it can thin the skin. Steroid!

    David Wallace, MD excellent doctor who writes many books on Lupus and others. Sjogren's too. Check them all out at amazon.com

    Till then browse the rooms. Lot of experience, advise out there and oodles of great people who do care and so do I. Read, read, read. See you about the forum.

    Keep looking for your wellness.
    Oluwa

    Words I copied and pasted here from Saysusie Admin, Moderator to another poster, in another forum, in another thread, on another day, at another time...which er, ah I forgot after I copied it to paste here...silly me. I am sure she won't mind...I admire her and appreciate lots the things she says. Much of our illness is on the inside..so that is why we don't look sick...or we buck up and bear it because a grimace face can bring a party down.

    "ABSOLUTELY WE HAVE!! Unfortunately, this is one of the most frustrating things about having this disease. Now, linguistically, if you take the name of our disease apart, it will explain to you why we have so many symptoms. Also, the fact that this disease is chronic means that it is a lifetime disease!

    Systemic= Affecting the entire body (skin, muscles, tendons, internal organs, joints etc.)

    Lupus = an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. A chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys, heart and lungs.

    Chronic = A persistent and lasting disease or medical condition, one that has developed slowly and generally does not have a cure.

    Erythematosis = A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the aetiology or a specific type of lesion often being indicated by a variety of conditions.

    So, the name of our disease means a lifelong illness that affects every part of our bodies and usually is first presented with redness on our skin (Malar Rash - Butterfly Rash).

    So, if we go to our doctor with joint pain in January, and with chest pains is February, and Digestive Problems in March, and Rashes that itch and burn in April, with sore aching muscles in May, with open sores and lesions in our nose-mouth-anus-vagina in June, with hair loss in July, with debilitating fatigue in August, with heart problems in September, with lung problems in October, with liver damage in November and with all kinds of viral infections in December, and we start this process all over again in January...we are not being hypochondriacs......WE ARE SUFFERING FROM SYSTEMIC LUPUS ERYTHEMATOSUS!!!@

    DO NOT let anyone (not even your doctor) belittle you or dismiss you by telling you that you are a hypochondriac. What is happening, instead, is that they are ignorant about our disease and they need to be educated. Stand up for yourself, educate yourself and fight for your right to be taken seriously and to be treated!! "
    I have Lupus. So *^#@! what.

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    Oluwa,

    Thanks so much for writing! I appreciate your input very much. I will check out that author for sure.

    Unfortunately, I had a REALLY bad reaction to steroids so they are not an option for me. I am still on the plaquanil (sp), however, I just talked to my doctor this week due to a recent ER visit, he thinks he needs to put me on something stronger but when he checked my liver functions my enzymes were WAY up (I have NASH too) so basically the meds he wants to put me on would put me in liver failure, not so good so he said to stay on the meds I'm on and he would just try to treat my symptoms. So I guess you could say I'm stuck between a rock and a hard place! I was thinking about a second opinion, any thoughts? I also see a NP who is trying to get me on this low inflammation diet. I say trying b/c my live is turned upside down right now, we are remodeling the bathroom and laundryroom in our house and the chemicals are soooo hard on me (the reason for the ER visit) that I am staying with a friend right now. I don't do well when my life isn't in order so I'm having a hard time staying on any kind of diet. Things should be wrapped up by this weekend though and hopefully my life will be a bit more "normal". I really need to try to eat better and exercise a little bit a day, it looks like my options are going to be limited regarding meds so I need to do what I can. The one think I've noticed about my rash, which happens to be on my arms, stomach and cheeks on my face, not my nose though is that using a more natural, organic lotion that isn't petroleum based seems to make it smother, it doesn't really go away but it feels better.

    Ok, I've gone on long enough. I'm so glad you wrote and glad that the treatments you are on are working for you! take care and feel free to write back with any advice.

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

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    Hi Onpointe...this is Saysusie, the author of the quote that Oluwa copied and pasted.

    First, Oluwa....Of course I do not mind and, just so that you know, you are very much admired by our family members here and, especially, by me :lol:

    Onpointe;
    There are many who are limited in the types of medications that they can take, as so they take a holistic approach to dealing with Lupus. Proper diet and exercise, as you said, are very important. Especially when you are unable to take a lot of medications. It is suggested that we follow the diet recommended by the American Heart Association.
    All of us are having to deal with the fact that we are living with a chronic illness. Our diets, today, includes so much processed foods, so much sugar, and so much fat. For those of us suffering with a chronic illness, it is very important that we try to cut these “bad” foods out of our diet. Instead of eating processed foods full of chemicals, sodium, and artificial flavors…it is strongly suggested that we make a conscious choice to choose healthy foods for ourselves.

    With reference to exercise, for most of us, this can be a very tricky thing. Try to find an exercise regimen that is right for you, not what is right for other people. Start small (non-jarring exercises - like swimming, yoga, pilates), and don’t over do it.

    It sounds as if you have a concerned doctor that you can trust and that is willing to work closely with you regarding your condition and your treatments. In your case, you may find it helpful to work with both conventional medicine as well as alternative modalities, and make sure that if you do so, that your medical doctor is willing to work with you to integrate alternative modalities into your treatment plan.

    We are here to help you, give you information, advice, support and comfort whenever you need it. You are not alone.

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

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    Default Thank you for the info :)

    Saysusie,

    Thank you for your reply! I do have a wonderful NP who is really on my side and I appreciate her so much! My MD is another story. I was referred to my Rheumatologist by my PC doctor (they are in the same practice,hmmm). He is a nice man but very hard to communicate with, he just nodds his head and takes notes. I get the feeling that he's afraid to guide me in the wrong direction so he doesn't give me definite answeres, which I need. I guess it's just a difference in personalities. The one thing he has said is that he does not agree that diet has anything to do with Lupus and that seeing an NP is a bad idea, I completely disagree with him on that point! I'm considering getting a second opinon but my attorney says changing doctors in the middle of an SSI case could be damaging so I don't know what to do. I am going to continue with my NP and together work on a diet and exercise plan, plus she is a great source for helpful herbs and suppliments and which are the best quality brands.

    As far as exercise goes, once this remodel of our bathroom is done and I'm back home (staying with a friend for the duration) I try to walk my dog but I see that I will have to carry an umbrella even in the sun. I also used to dance and LOVED it. I have some low impact bellydance DVDs and a low impact ballet DVD and I am getting ready to order a barre to help stretch and do barre work. I would like to do about 45 min a day but as I am learing I'm just going to have to take it day by day. I'm finding that just getting out of bed is a positive somedays.

    Thanks for your input, I really appreciate it!

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

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