View Full Version : Hello! =)
11-12-2009, 05:03 PM
My name is Shannon, I'm 28 years old from SE Michigan. I was just tentatively diagnosed last week with SLE. I'm seeing a rheumatologist at UofM and he's just waiting for some tests to come back to confirm.
I've been suspecting it myself for a while.. (been having symptoms for about 5 years now, just started putting the pieces together with a new GP about a year and a half ago).
They've already started me on 200mg of Plaquenil twice a day.. been doing that for a week. Not seeing much difference yet, but I know it can take awhile. I'm just looking forward to getting this under control and feeling better soon. I've been so ready to tackle whatever this ends up being head on... I just need to know what I'm up against first! :cute: The rheumatologist is pretty confident that it is in fact lupus though, so, I've been trying to learn as much as I can lately.
11-12-2009, 06:35 PM
Welcome to WHL!!! Sorry you need to be here, but you have found a great group of supporters!! I just started that same medication and it can take up to 2 months before you notice anything. I am new to all of this as well I have learned so much about the disease, how it affects us, and how it affects our loved ones.
11-12-2009, 07:25 PM
hi shannon, welcome to our family. You have found the best place to receive answers to questions, to learn ways to treat symptoms, and whenever needed, to find a shoulder to lean on. We have some members who are incredibly knowledgeable in lab reports, so feel free to ask for explanations to some of your levels. So many of us take different vitamins to help offset some of the blood levels, and we are always available to share our discoveries. Again, welcome and please make yourself at home....this is a safe haven.
11-12-2009, 09:11 PM
Welcome to the WHL family!
I also take plaquenil and it does seem to help, but takes a while.
It does help to learn about what we're dealing with, doesn't it? Sometimes it's a great relief just to have a name for what we've been feeling. This is a great place to find information and friends who understand. Sometimes we just need to vent, and everyone at WHL seems to be a great listener.
Good luck, and stay in touch with us,
I'm Rob, and I was diagnosed in 2004 with SLE. I have to say it sounds like you are on the right track. You are on your way to a definite diagnosis, and in anticipation of that, you have been started on Plaquenil. The drug can take a long time to finally show beneficial effects (up to six months), but in most people once it kicks in, it is very effective with little in the way of long term side effects. You do need to have a Opthamologist monitor your eyes for possible retinal damage. While this is an obviously bad side effect, it is also quite rare. Just make sure you have an Optho keep tabs.
You'll probably notice that many of the people here have lived with SLE for quite a long time. For me it's been almost 7 years. Others here have lived with SLE for 10, 20, and over 30 years, and they have thrived despite it. Lupus is by no means an end, and for many people, it can be controlled, and managed with the proper meds and lifestyle changes. Lupus IS NOT and end by any means.
Please, ask any and all questions you may have, and make yourself at home here. And above all, have hope.
11-13-2009, 06:01 AM
Thank you everyone for your warm welcomes! I've poked around a few other message boards in the past week and this one seems to have a more genuine feel to it.
I'm reading a lot, even on top of my school work lately.. which is never a bad thing! I've found that Dr. Wallace's "The Lupus Book" is very informative and I think it's going to be a nice resource. My husband also read through it and I think it freaked him out a bit. He's been having a rough time wrapping his head around this to begin with. I think he's at a loss because he feels like there's nothing he can do to "control" this. It's not like having a wound: do A, B, and C and it will eventually heal... he's a fixer, but I think most men are.
Then again, this has been my week to fall apart and be angry over it all. Just a few nights ago, I lashed out at him and was angry and frustrated :hissyfit: so much that I ended up in a heap on the kitchen floor bawling. I thought for just a moment that maybe he wouldn't be able to deal with this and he might leave because of it.. and I totally lost it. But, he was right there with me on the floor, just letting me get it out. It sounds cliche but I think that was the end of my grieving process (for now at least) regarding my diagnosis.
It's funny, too, at first I was mad at myself for even getting upset. I'm a nursing student, I've read about all of this.. dealing with a new diagnosis, grief, etc., etc. I should know how to deal with it myself, right?! Just goes to show you that you can read all you want out of a book, but until you're in the moment and experience something firsthand, you really have no clue... You might have an idea.. but it's being in that moment and living through it that allows us to truly learn.
Wow, this one ended up much longer than I intended it.
Thank you all for welcoming me, and listening. I think I'm going to like it here.
11-13-2009, 07:42 AM
It sounds like you're well on your way to acceptance, Shannon. You're right in that until we're faced with a situation ourselves, it's very difficult to truly comprehend what someone is going through.
I, too, purchased Dr. Wallace's book and found it very helpful. You're fortunate that your DH has read some of it (at least) and shown an interest. Unfortunately, that's not always the case :(
It's hard enough accepting the diagnosis yourself, but add an unsupportive SO to the mix and it's easy to feel abandoned.
Welcome aboard! You've found yourself a great group of very knowledgeable and compassionate people!
11-13-2009, 05:49 PM
Welcome to WHL Shannon!
Sorry to hear your diagnosis but knowing is half the battle! You have come to the right place to find support/love/understanding.
11-14-2009, 05:48 AM
Welcome to the group! Sorry to hear you are dealing with so much. It is really hard to deal with and even harder to accept. I was diagnosed with RA several years ago and now turns out it wasn't RA it's Lupus. I had done extensive studying on both diseases over the years so when my diagnosis was changed this year I had pretty much already accepted it years ago. I have a friend I met on here who is having a really really tough time accepting the diagnosis. sunshine is right knowing is half the battle. it's good you are on the plaquinil, I have heard good things about it and am on it myself. Only been on it for a 2 mo now so I can't tell you much, as it hasn't kicked in for me yet! You really have come to a wonderful place. Welcome once again! take care and you can message me anytime if u want.
11-14-2009, 10:58 PM
Welcome to the WHL family! This is an amazing group of people who are supportive, caring, and understanding, and lots of fun too!
I'm also from SE Michigan, and I was diagnosed with lupus in the fall of 2006. Looking back, I probably actually had it since 1999, when I first had symptoms, but no one knew it and I hadn't even heard of lupus until my diagnosis! It was really rough for a while, then this summer I was in remission and felt fantastic. I'm in a major flare right now, though, but I know I'll be okay again as soon as it works itself out.
The emotions you're having are totally normal - learning I have lupus was a loss...losing the life I had and the life I expected to have in the future - and I went through the grief process as I think many of us do. So try to be gentle with yourself, especially at those times.
If you're looking for a great support group, let me know. There are a few in the area that have been very helpful to me, where not only did I have a chance to spend time with people who are going through what I am in face-to-face interactions, but I also made some good friends from the group and organization.
11-15-2009, 05:42 PM
hi shannon welcome to our group as you can see you are not alone we are a group from all over the world the people here are wonderful and a great support they have got me through some tough times lately i was diagnosed last year but my rhuemi believes i had from my teens but nobody tested for it. my mother also has lupus so they think mine was hereditary. both my daughters are now being tested . you go through a lot of emotions i am learning along the way last week i was just angry other weeks crying and other weeks just glad they found out what was wrong and glad to be alive. you will always find a shoulder to cry on here . hope you feel better soon the drugs do take up to 8 weeks to kick in and sometimes the doctor just has to fiddle around with the dosage and till he finds the right amount for you i am on prednisone, plaquenil, mexotrexate i have regular eye checks because of plaquenil every 3 months. hugs kim l