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 I've been feeling really depressed and withdrawn since the doctor's appointment.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.


Coolbeans said...

Hello Dear Butterfly Girl!Hi my name is Abby, I am also a 27 year old woman suffering with Lupus. I have had Lupus for about 8 years now. I was diagnosed with SLE and other cross connective tissue diseases when I was 20. This all took place only a few years after my adopted sister Ming passed away from Lupus complications.( Yep you read it right my Adopted Sister) How strange this all is. When I first got diagnosed, I was in denial....BIG TIME!!! It wasn’t until my 3rd diagnosis that I admitted to myself that i had Lupus.I presented with severe inflammation in all my joints, fevers, sores, unbearable pain, hive like lesions. At first i thought it was just unresolved Lyme disease coming back. I had been diagnosed with lyme disease about 2 years earlier... but inside i knew that this was something else. My ANA came back reading 10,240 off the charts. And i had every classic symptom of SLE. Along with a high ANA they also said that I had a the lupus blood disorder, cardiolipod anti-bodies and anti phosphipid Anti-bodies( I know I didn’t spell that right--- please forgive my terrible spelling!)--- Strange thing this Lupus seemed to be presenting itself almost exactly like my sister's.
I feel that i have to share this with you Butterfly girl, I accidentally came across your bloging response, while in search of trying to investigate if there are any New treatment options available, and I have to tell you I hate staying on the computer, but when I saw your blog it instantly caught my attention because I too have never really tapped into any online support group and I have never met another young woman around my age that is also dealing with this terrible disease. Being only 27 and a young woman I have to admit to you that i have so many thoughts, frustrations and worries that go through my mind and just agonize my heart. Like will i be able to be a good mother someday, will I be able to have children, Will I flare on the day of my wedding, will I ever loose this aweful weight that i have put on from all this stupid prednisone. When will I be able to just have a normal day without any pain? How can I still and am I going to be able to achieve all the desires God has placed inside of me? I don't know about you ... but if I didn't have my Faith and God's streangth to tap into when I'm drained, I think I would have given up along time ago. But It's through God's Love and streangth that I am able to see and know for sure why God has placed me here on this earth... and that's to show others that if I can stay close to God through all of this, anyone can. I just wanted to take a few moments and to THANK You for placing your blog... it's nice to know that I am not the only young woman going through or feeling like I do. If i can encourage you with one thing that I am slowly and painstakingly learning it's that with or with out the lupus, i truly believe that sometimes the toughest of trials come to only the strongest of character! So God must know that you and I both are very SPECIAL and strong women to deal with the spiritual, emotional and physical heartache that come with this illness. I will be keeping you in my prayers and please Keep me in yours as well. I hope your day is overflowing with Gods beautiful blessings! Thanks again!

LFA said...

Butterfly Girl ... hang tough, ok?

Found an article on lupus and kidney disease in the Summer 2007 issue of Lupus Now magazine. Here's a link to it.

Will talk with you offline too. all the best, Wick

Deb said...

hello Butterfly girl! My name is dlynn(deb). I am 51 yrs. old. was diagnosed with SLE approx. 5 yrs. ago. I am so grateful that at 27 yrs, old I was raising my children, able to work full time as a nurse, was very active, and felt on top of my life..SLE, is very difficult on all levels of a persons life...Spiritual, mental, and physical..I can only imagine being so young, facing the challenges that you are experiencing. From my choices and peace of mind, I have had to do serious soul searching. This has indeed been a journey, not happening over night, and I have no doubt, it will continue to be a journey of twists turns, and challenges. I have had to once again, believe and have faith in my higher power. I know this is very difficult to do, when experiencing extreme joint pain, medication side effects, kidney involvement, depression, feelings of empending doom, loss..I know because, i too have all of those feelings at times..I have tried very hard to stay in a positve, nurturing frame of mind. Sometimes i dont want to talk either. I want to live inside my shell and just be free, like the butterfly...I believe all on this web site have inner connections, and a knowing.I do not know anyone personally with Lupus. I am grateful to have found this site. It is comforting on many levels to know you are not alone... To have support and understanding of your challenges is in itself healing.My heart, thoughts, and prayers are with you. Believe that you will find all of the answers you need for your healing journey. Blessings to you....May the light of God surround you and heal

always sleepy said...

Happening upon your blog this afternoon gives me hope that living with lupus might not always have to be so lonely. I have many wonderful friends and a loving boyfriend, who have supported me in all the ways that they can. But I have never met anyone else with lupus who is my age and who shares my fears and concerns. I am so excited.

I am a 28 year old woman (turning 29 on Sunday). I was diagnosed with SLE in 1997. I work in a very high stress profession, in a job that I enjoy. My lupus is mostly "under control" but definintely not in "remission." So every day, my struggle is how to take care of myself and keep pursuing my dreams. Many days it's very hard and I'm not sure I always make the right choices.

I'd like to write more, but I am actually headed out of the office to the rheumatologist in a few moments. I have some thoughts on your comments about hoping this kidney thing turns into something, which I will try to share later.