I signed up for this site this past summer but never posted anything because at the time my diagnosis wasn't confirmed and I just wanted to read what people were saying to mentally prepare myself for what I had a feeling was coming. Now that the lupus diagnosis is in, I feel like I can officially become a part of this community and post my "hello"!
Like I said, I knew this was coming because I knew it wasn't normal for a 25 year old (now 27) to have a fever every single day, be too tired or sore to do anything and have the memory of a 90 year old but I'm still struggling with the diagnosis. I got my first face rash a few weeks ago and my scalp is starting to get sores which scares me the most. I have dreadlocks and find myself looking into the mirror every morning saying "Ok lupus, you want to take my body? Fine. You want to take my mind? Alright. You want to take my face? Ok. But let me tell you, if you take my dreads we are going to have a real problem on our hands!" I find pointless threats and twisted humor are my coping mechanism. haha :)
Anyways, I'm a full-time artist which I've found to be both a blessing and curse. Being self employed allows me to set my own hours and rest when I need to. However, the pressure of running your own business makes it hard to allow yourself those times of rest. These last few months my business has been suffering because of all the lupus fun.
I guess that's all for now! I'm just really thankful that a place like this exists because all of my friends have backed off like I'll die if they even look at me and my family is either pretending the diagnosis isn't there or are convinced its just Lyme disease.
Looking forward to having a place to voice any future frustrations I may have and learn from other peoples journeys with this disease.
Welcome to the board(again :)) Sorry for the reason you are here but glad you found us
Welcome, and sorry about the Lupus. At least you know what it is now, and hopefully you're getting good treatment that can help you stay as healthy as possible!
I lost a lot of hair when I went on methotrexate, but much of it has come back. It still would make some sorry-@ss dredlocks, LOL...but there's more of it than there was 6 months ago for sure. I find that taking a daily biotin supplement helps (and sometimes I double up and take more) - but just like anything, be sure to ask your doctor. The woman who cuts my hair suggested it - she's had several clients on chemo, etc and has helped people with these issues in the past. It's just a B-vitamin, so it shouldn't be a big deal, but everyone's different and you don't want to be taking stuff without your doc knowing. It's surprising sometimes what can cross-react with medications, or stress your kidneys, or whatever. It's just always a good idea to check. This disease seems to stretch it's creepy little fingers into EVERYTHING.
Anyway - welcome! It's a great, supportive crowd here.
Hi and welcome to the WHL family! I do hate that you felt you had to wait for a diagnosis to join in but I am glad you now feel comfortable enough to share with us.
we all have our own ways of dealing. I think most of us get a slightly "odd" sense of humor after being sick. We have to learn how to laugh and healthy people sometimes find our jokes a bit odd. Thankfully, my family here gets me completely and it is why I value them so much.
i look forward to getting to know you better and I will keep my fingers crossed about the dreads!
Hi Nicole Lenore86, and welcome to WHL. Just be careful your twisted humor doesn't twist your logic too far... 'Course, twisted logic has helped me cope more than once... tic - Anyway, there's nothing wrong with the memory of a 90 year old. At least, I *hope* not... |;^)
What sort of art do you do?