Wednesday, January 30, 2008

A New Path

So I saw my new Nephrologist last Friday and unfortunately the news was not too great. I'm scheduled for a kidney biopsy next Tuesday and will have to be admitted to the hospital for at least one night.

Although I'm going to have to wait and see what happens with the results of the biopsy, the doctor said he thought I was in either stage 3 or stage 5 (or class 3 or class 5 - I'm still getting used to these new kidney terms). He used phrases like "disturbing" to describe the progression of the nephrosis (I think that's the word?). He's put me on a water pill to reduce the amount of edema and a blood pressure pill to try and lower that. So now I take 12 different pills each day which isn't a big deal I guess, but I can't help but feel troubled by the amount of toxins I ingest on a daily basis to try to combat this thing. And I feel that's not even close to the amount of drugs I'll be forced to take if this turns out to be what the doctor fears.

I was planning to write a daily blog now that I know people are actually reading it, but I think I will have to make it weekly instead. I've been feeling really depressed and withdrawn since the doctor's appointment. I don't want to be social, I don't want to talk about my kidneys or lupus anymore, I don't want to be brave or stoic or "special" or any of the things people seem to perceive in me. I just want to feel scared and selfish and I want to escape from my life at the moment.

Lupus can be such a lonely, isolating disease. I don't personally know anyone that has this disease (other than those that I've found online). People have never heard of it, or if they have they don't know what it is. Or if they do have some vague idea, most of their information is totally wrong. If I tell someone in my life that I have lupus, it usually ends up being a 10 minute educational lecture about lupus and I leave the conversation feeling like "Okay, well I've spread a little lupus awareness which is good, but this person still has absolutely no idea how I feel or what it means to be a person suffering from lupus." It's just very frustrating.

A new friend of mine runs the Lupus Foundation of America blog ( and he has a great idea that all of us in this online lupus community can join together to raise lupus awareness. I think it's a fantastic idea. What better medium for those with lupus is there than the internet? I am not a computer geek by any means and had never really even thought to look for groups and blogs about lupus on the internet before, but now that I've seen how many of us are out there I think this could be the way to finally stop the question, "Well, what is lupus exactly?"

On another note, I have the strangest feeling like I will almost be disappointed if the results from the biopsy do not show significant kidney disease. Of course, that is not how I really feel. More than anything in this world, I want to be "ok" medically speaking. I want to feel "normal" and I do NOT want to go through the treatment options that currently exist for kidney disease. However, I've built this all up in my head so much, and have been trying to prepare for the worst, so if it doesn't turn out to be that I almost feel like I've let everyone down or overreacted. I know that doesn't make sense but there it is.

I guess that's all I have to say for now. I hope anyone out there that's reading this knows that there are so many people going through the same thing that you are. Lupus sucks. Sometimes I'm at peace with it, sometimes I'm not. I'm not today.

Thursday, January 24, 2008

I can't believe people read my first post!

So, I created this blog after reading as I found her message so inspirational. I really didn't think anyone would read my thoughts and after creating that first entry, I kind of stopped thinking about it.
Well, I was completely surprised and happy and excited when I decided to check it today (while at work - don't tell) and I saw 7 comments all from great people out there dealing with the same issues that I am. I can't tell you how completely inspired I am by all of you! Apparently, I'm going to have to start writing in this blog every night now because I don't want to disappoint my audience :)
This has been a strange week for me as tomorrow I have an appointment with my new Nephrologist to discuss what's going on with my kidneys. I've been waiting for this appointment for a month and a half and now and I feel like I've built it up so much in my head that I'm bound to be let down by the outcome - no matter what that is. I know that most likely a kidney biopsy will have to be scheduled, so tomorrow probably won't be the day where I get the definitive answers and treatment plan that I so desperately need. Not knowing is so much worse for me than knowing because at this stage anything is possible (i.e. kidney failure, dialysis, chemo, etc. - I just don't know).
I feel like I've been holding my breath about everything in my life until I know what's going on with my kidneys. I desperately want to get a new job, but I can't even begin thinking about it until I know what the immediate future holds in terms of my health. Anytime that Lupus rears its ugly head and gets in the way of what I want to do my immediate reaction is that of a petulant teenager - "Lupus, you can't control me! I'm going to do what I want to do!" But in the end, I always follow my doctor's recommendations and live my life to the best of my ability, weaving in and out of this lupus maze. Does anyone else out there ever feel like this?
I read an amazing quote yesterday that really inspired me: "Everyone dies, not everyone truly lives." I'm kind of meditating on that right now and for some reason it helps.
I'm sure I'll have much more to write about tomorrow.

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.