Well, I've been lurking about the boards for a year or so, I think, posting and reading. While I've been here, I've begun to see a rheumatologist and had my pain confirmed as an auto-immune problem. I was initially diagnosed with UCTD and have been undergoing treatment for it for not quite a year. But today what I both hoped for and dreaded has happened, as I know most of you will understand.
Today I showed pictures of my facial flush to my rheumy, and he confirmed it IS a malar rash. Due to my other symptoms combined with the rash (which feels funny to call it a rash, since it just feels like I'm blushing), he has diagnosed me as having SLE.
I feel somewhat vindicated, as I've suspected it was lupus for a long while now (not as long as some folks, but longer than I've been seeing a rheumy for sure), but I'm also plainly terrified. It's a terrible thing to be told outright that I could go into remission for five years, then suddenly take a bad turn and die. I know he told me this as an example of the extremes of the disease, and why he couldn't give me any answer as to what he thinks of my future, but it's a hard thing to hear. I even already knew this about lupus, but it's STILL hard to apply those facts to myself finally.
I'm still reeling, feeling like I was blown into bits that are now swirling round and round and trying to reassemble into what I normally should be. It's hard. I'm sure it's easier because it wasn't a surprise, and that I was braced for it and educated as to what it was... but it's still hard.
So this is me, settling in for the long haul (hopefully), knowing that I now very much belong here with the rest of you, for good or ill. ::shaky smile:: Thanks for being there for me, y'all. I appreciate the support, and am glad I already had y'all to talk to before this diagnosis. We can walk the long road together.
If there’s one positive thing that’s come out of me being poorly. It’s this group - it really does lift you up and give strength when you need some! It’s so lovely to have people who understand, even if you just need a bit of a rant!
I’ve not been formally diagnosed yet but suspected to have fibro and lupus. It’s a long and hard road but now, in 2014, Lupus isn’t the death sentence it was 20 years ago. It’s scary and there’s times when I’m sure we all feel hopeless but as hard as it will be, you can still get by and live a long, happy life with the help of medicine, research and a good support system around you! I get really down sometimes about my illnesses, which is only natural, but I think it’s really important to try and take hold of the positives and just take each day as it comes.
Sorry if I sound a bit preachy - it’s not how I mean to come across, I’m just trying to say don’t write yourself off! We just have to learn to adapt to our troubles.
Try to Keep positive, anything you need - you know you have all our support!
Chloe x
Hugs☺ positive thinking, family, good friends, and God. You live once so smile an embrace what you cant change but dont ever let lupus get you down. Try an if it gets you down, find courage and fight. You are not alone you have all our support. Sooo hugs and never forget you would get through this.
Formal diagnosis of lupus or not - you are welcome here. I believe that you should treat yourself as though you have Lupus even if you only have the symptoms and not the diagnosis.
Try not to look at your whole future at once. You can't know what will happen anyway and you will imagine the worst things. Just take one day at a time. There will be better days and worse days. I've had lupus for at least 35 years, Mom has had it for 70 years, so don't fear death. Welcome to the very supportive club. ((soft hug))
I know you are probably scared right now as this Lupus stuff is so flighty by nature and you don't know what to expect. You know what? That's perfectly all right. You are at the right place with the right people to help see you through this. You can vent, rant and ramble and be supported. You have friends here that "get it". I welcome you also and remember: You aren't alone on your journey. :)
It is a journey for sure with many ups and downs! The best thing is to know you are not alone and this site proves it! So welcome to to your lupus family, we are always here for each other. Just put one foot in front of the other and keep going.
I agree with all previous statements! I was diagnosed about 10 months ago but have had symptoms of Lupus and Sjogrens for the past 4 yrs. I was finally diagnosed with Sjogrens, SLE and Reynauds. The worse part was not getting diagnosed and family thinking I was crazy! I feel very vindicated, a bit resentful, but mostly grateful. Some people never get diagnosed because they listen to others, instead of their own bodies!
I’m also very thankful for this support group!! It’s a lifesaver:)
I know what you mean about finally getting a diagnosis even tho it might not be what you want to hear. Treatments for Lupus have gotten way better than they use to be, research is ongoing & there's a good chance you'll be able to live a long life. Take one day @ a time , with the help of medical treatment, family, friends & support that you'll find here on this site. Lupus affects everyone differently & some go into remission & stay in remission for long periods of time. Think positive thoughts & know we are all in this together.
Thank you everyone for your kind words! I don't mean to sound so doom and gloom... though I suppose there is some of that in the mix of emotions. It's a classic case of more fear of the unknown. At least it's LESS unknown than it was, to some extent. LOL, this is such a confusing disease to have to deal with! But I really, sincerely appreciate the words of love, support, and encouragement y'all have shared with me. I'm dealing pretty well thus far, going through the swing of emotions involved, and my hubby has been right here with me through it, and will continue to be so. I'm blessed with an understanding, supportive family here, and further blessed with my Lupus family on the boards. ::big hugs to everyone::
Talencia - Gentle Hugs back to you. I am so glad you found this site and that you are searching for encouraging people who can understand and support you through the ups and downs. While I have very supportive family and friends, it can sometimes feel isolating when my "old life" beckons and my "new body" has no way to keep up or even attempt the things I used to do. It is at those times I know that I have a group online who understands my grief for my life past, as not a pity party for me, but as a way to allow me to move forward and look expectantly on all the good things today and tomorrow have in store. My family doesn't relate, my friends don't relate, but my online contacts here can and do offer those strong words of support. Thanks to all of you for keeping me positive even on my not so good/positive days!
Hi!!! yes - it don't make sense that this Lupus stuff is that way , but you are right at any moment it can/will turn for the worest . But try to stay positive and don't stress and keep doing what you can (health wise ) . There are things that we all can do is get the Knowledge and give words of advise to people - advocate about Lupus !!! Take care and best wishes go out to you...Beverly L.