Thursday, January 10, 2008

My first post

I have lupus (SLE). I'm 27 years old and I've had lupus for 11 years. There is much more to me than this, but right now it's the most important thing going on in my life - which probably isn't that healthy.

So I'm not exactly sure why I am starting this right now. I'm getting over having acute bronchitis and I'm tired. I have a dermatologist appointment on Friday to see what's going on with my discoid lupus (lesions present on my scalp which is causing me significant hairloss). Also, I have another appointment with a kidney specialist at the end of this month. I am VERY worried about the degree of kidney disease or failure going on - I think I'm really sick. I saw this look on my doctor's face when she was reading the test results from a 24 hour urine test I had to do (basically you have to pee in a jug for 24 hours straight and then they test your levels - important for me was the amount of protein being lost).

I'm apparently losing 4,000 mg of protein per day and I'm still not sure what that means. It's pretty much all I think about right now. Well, to be more exact, all I think about these days is the life that has been lost for me - that life that I always imagined I would be living when I was a young girl thinking about what being an adult meant. I'm supposed to have lived up to my potential by now - and I guess the most irritating and depressing thing is that I think I would have if not for this disease. But then I realize that "potential" is bullshit and I'm striving to be at peace with myself, this disease, "where" I am in my life. Because in actuality things are pretty great - I have a fantastic (most of the time) boyfriend, a shitty (but not really) job that pays my bills and health insurance, a great apartment, wonderful friends, etc.

Okay, I realize this is just total stream of consciousness writing and nobody but me will be able to tap into it. Basically, I'm trying to cultivate mindfulness right now and I guess I think this might be a good way to get my thoughts and feelings out. Hopefully, maybe some other people will be sharing a similar experience - or at the least, learn what lupus is.

As I say, this is my first blog and my very first post so give me a break. Mostly, right now I'm not necessarily afraid I'm going to die (although the thought does cross my mind and makes me so sad for all I'll miss and for the people who will miss me), but I'm more afraid of the terrible treatment options out there if I have kidney failure, or permanently lose all of my hair.

If anyone out there is actually reading this, I'll try to be more coherent and grammatically correct next time around.

Sleep tight.


Miz Flow said...

Hi Butterfly Girl,

Thank you for the lovely comment you posted on my blog. I'm so glad that you did because it gave me the oppourtunity to read your first entry. It seems that we have a lot in common in terms of out age, when we were diagnosed, etc. I'm 25 and was diagnosed with Lupus 12 years ago. I've always had kidney involvement, but it basically get really bad at the end of 2004...and now i'm on dialysis.
I hope that we can remain in touch. If there is anyone who understands what you're going through, it's me. You entry touched on many things that go through my own mind. I encourage you to contact me with any questions you may have in regards to the kidney thing..or anything actually!
All the best, and I'll be keeping up with your blog too. I think it'll make you feel's kinda therapeutic.

MiLeTTe said...

blogging helps you with the lupus stress. believe me.

just keep the faith. i was 22 years old when i was diagnosed with lupus. i was the first case of lupus in the hospital i was first confined. now, i am 28 years old married and have a wonderful 17 month old baby girl.

hang on there!

my blog

LFA said...

Hey Butterfly Girl:

my name is Wick Davis and I'm with the Lupus Foundation of America. I came across your blog and wanted to reach out to you. The LFA has its own blog here Plus, we're reaching out to other lupus bloggers. What I'd like to do if you're interested, is post a link to each other's blogs on our respective sites. You'll notice that on the LFA blog, we have a decent listing of bloggers. I'd love to add you as well. Should you ever want to brainstorm about ideas as to how to raise lupus awareness, please let me know. You can reach me at Hope to hear from you. And happy 2008 to you. Wick

SusanNM said...


I empathize with your feelings and worries.
I also have Lupus.

You are in my prayers

AzAzura said...

You did very well with this blog , I really do like your first thought and I really feel you ,I am 27 and had Lupus for 3 years now. Im with you. xo

chronic chick said...

I hear you. I'll put you in my prayers. Lupus is no fun. Im almost 30 and have had lupus for over 6 yrs yuck...

Liz C. said...

I was about your age when I got diagnosed, actually, so I know how you feel. We ALL know how you feel - I know that lupus can be terribly isolating, but never forget that you're not alone. I have a blog, too -, and a website - We're trying to raise money to send women to the LFA's Advocacy Day - you should think about going.

SGethers said...

Hello there, Butterfly Girl! My name is Sylesia and I am a long time Lupie. If ever you want to chat or call me for support. You do just that! I've read your blog and I'm really touched by your story. You remind me soo much of myself, young, beautiful and affected by this horrible disease. But, we are going to be OK. Lupies are strong people and we stick together no matter what! SGethers721@GMail.Com Take care and live well.

Mixtapes Bring Smiles said...

hey i just found your blog because i was checking out my google analytics and saw a link to this blog and then i realized it was you. how amazing of you to create this blog and what an inspiration you are to everyone. it is such a honest blog with such heart. and as someone that doesn't know much about lupus, i really feel like i know a lot more now that i have read your blog.

katinataneva said...

Hi I am writing you from Europe-Bulgaria,
My sister Maya was also diagnosed with lupus few months ago. She is 28 years. We haven;t heard about lupus before. It is frightening but now when I see all your support I feel more stronger in being beside my sister. She is with discoid lupul. She is the best and funniest person I know, she is young, beautiful and strong. I know that she will be OK.
Greetings from Bulgaria
Take care

JoanieK said...

Hello Butterfly Girl,
I just read your blog and i want you to know that you are not alone. I have had Lupus since I was 27 years old and now I will be 47 in August. I also have lupus nephritis and just last Thursday had another kidney biopsy. You were so right in decribing the procedure. It hurt like h___! I have been in remission for 15 years. Prior to that I was on 60mg prednisone and Cytoxen chemo for 18 months. I'm not going to lie to you it sucked but like I said I have been in remission for 15 years. yeah I wish it was longer but those years were great. The way I'm looking at things is if it takes another 2 years of treatment to get 15 years of fantastic I'll do it. I have my follow up visit on the 14th to go over my treatment procedure. They said that since the prednisone and cytoxen worked the last time that they might just stick with what worked. We will see.
You sound positive and believe me that is half of the battle right there. If you ever feel like screaming or crying or even laughing to someone who knows what you are going through, give me a buzz. Keep smiling Butterfly Girl!

jeanette said...

hang in there, my sister was recently diagnosed after being treated for various symptoms over a 4 year period. I am trying to be very informed so i can be supportive to her. I know she will be okay she is mid 40's with 2 beautifull teenagers. I will support her fully

jeanette said...

hang in there, my sister was just diagnosed and she is in her mid 40's with two beautifull teenagers. I will suport her fully, I live in the states and she lives in toronto. she has been sick for 4 years and just received the diagnoses 2 weeks ago,