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crushingpretty
04-07-2008, 10:08 PM
I just wanted to say that I am so very excited to have found a support forum for lupus. :)

I was diagnosed with lupus at age 16 (four years ago this summer seems so strange to me.). My diagnosis came after a summer from hell. I never went to the doctor. But I kept developing rashes and was horribly tired. My doctor dismissed my symptoms completely. A month and a half later I was in end stage renal failure with a diagnosis of sle; no thanks to him. (He even had the nerve to brag about how well he knew how to diagnose lupus. He dismissed my symptoms entirely, and I was finally tested and sent to the ER through a different doc)

Anyway that year was the hardest- and that's what I was told would be the case. My doctors and (it seems) an entire team went into my care at Riley Children's Hospital. I was on dialysis for a little over a year and then my kidneys began to recover! Currently I'm doing absolutely wonderful and am on very few medications.

I deal with day-to-day symptoms as best I can but knowledge and the comfort of knowing how to deal with the symptoms makes things a lot easier to handle. The bfly rash, fatigue, nausea, and joint stiffness are the main things I encounter. But I only get better at fixing/preventing these problems. (With the help of amazing docs!)

High school was a total mess, but I graduated on time despite missing an entire year. I don't let this disease stop me. And I will not let it control me. At one point I thought it had taken everything it could: I couldn't walk, sit up, lift a pinkie even. I lost all resemblance to a girlish figure and my once long long hair. I lost my carefree lifestyle. I lost my freedom.

And then I reached down inside me and found every bit of strength I could. And I vowed to take everything back. And I have. bit by bit, I'm controlling this. I couldn't have done it without my wonderful boyfriend, parents, family, nurses and doctors.

But my experience with lupus and people I've met since has left me very irritated that diagnosis takes so long. And that (women especially) aren't listened to in doctors offices. I took a Biology of Women course and was taught that this tendency is just that, a tendency. Women are so much more likely to be brushed off for whatever their symptom is. Studies use men far more often than women or both genders. Doctors are taught by the books- books that use statistics based on men. But the genders experience disease and life itself differently. It needs to be acknowledged!

And it makes me angry for all the women who can't get treatment or even piece of mind that yes, there is something wrong with them and no, it isn't their own fault.

I don't know how to change this. But I want to send out my support to anyone who needs it. <3

jesseyleigh
04-07-2008, 10:16 PM
Yea i get to be the first to say WELCOME! and thank you for your wonderful and uplifting story!

crushingpretty
04-07-2008, 10:35 PM
Thank you so much. :)

I should be doing homework but I'm glued to these forums!

jesseyleigh
04-07-2008, 10:37 PM
LOL im gonna go on my soap box about college really fast... visit disabled student services it made college so much easier :)

sits_inthe_corner
04-08-2008, 02:43 AM
Welcome crushingpretty

This is a great support group. The best thing you can do is be stuborn.

And I'm good at that :D

Yes it's hard to get a diagnoses and treatment. I wonder how much of that is dictated by government and medical insurance.

I found out recently that here in Canada my family doctor can no longer order certain tests like an MRI. That has to be done by a specialist and they are unwilling to do so easily. Then I find out that there is a shortage of isotopes the stuff they use to do a MRI. So hmmmm is this why it's hard to get diagnosed and have the tests we need?

Oluwa
04-08-2008, 03:13 PM
CrushingPretty..

Welcoming you with open arms...you've been through so much and came out so strong...

I love your strength, the optimism..we welcome that support. I am glad you are here. Many of us need support and I hope if you need support you know we are here for you too.

Thank you for joining us...hugs.
Oluwa

Pearl
04-08-2008, 05:10 PM
What a beautiful story. You have no idea how encouraging your words of survival are to many on this forum. The diagnosis process is an unbelievable journey. Stories like yours need to be told so that hopefully, others in the future will not have to suffer as you did during that lengthy process. Thank you for having the courage to share with us. I hope you find warmth and comfort here.

Jana

Saysusie
04-08-2008, 07:51 PM
Hello and welcome, CrushingPretty;
I am so happy that you found us and that we are what you were looking for. First, let me take my hat off to you for fighting for your health, for standing up for your right to be taken seriously and your right to be treated, and for your desire to gain as much knowledge about this disease as you can.
You are very brave and very intelligent! I am happy that you are doing so much better now and are able to find ways to manage your disease.
Every single person in this "Family" is kind, understanding, informative, caring and supportive. I know that you will fit right in :lol:

Again.......welcome!
Peace and Blessings
Saysusie

crushingpretty
04-08-2008, 09:02 PM
Thank you so much for all of your warm greetings. :) It's so nice to be here.

You are all so very encouraging and inspiring.

Oh, and if it's at all possible to remember- my name is kate. I probably should have made that my display name in retrospect. But crushingpretty is from a line in a song that really inspires me. It's called Rise Up With Fists!! by Jenny Lewis with the Watson Twins. I took a lot from the song, and I believe it means that you've got to keep fighting. Now matter how many beautiful things are taken away or diminished, you've got to rise up with fists.

Not sure why I wrote all of that out. It seemed to help me, so maybe...

Tomorrow I'm making an appt with my GP to tell him I have a UTI and he needs to help me get rid of it ASAP. I'm not having this go to my kidneys. :P

I wish you all the absolute best!!!

Saysusie
04-08-2008, 09:13 PM
As You Wish, Kate :lol: :o :D

Let us know how your appointment goes!

Peace and Blessings
Saysusie

crushingpretty
04-10-2008, 06:38 PM
Ah. I love my doctors. I wish everyone could be so blessed with such attentive and kind docs. I went in and I told him what was wrong. I have a "roaring infection" it seems.

It's nice though, because I had been feeling crazy all week. Like completely off my game, unable to sleep, anxious and like I wasn't doing something right even though I couldn't quite figure it out. Now, I think I've got it. A roaring infection, it's gonna send me wonky. Always does. But now that I know things are being taken care of I know I'll stop freaking, be able to sleep and stop being so anxious.

Whew. I hope everyone else had a lovely, or...err, manageable day to say the least.

Saysusie
04-11-2008, 10:37 AM
Kate;
I'm glad to hear that this issue was easily discovered and can be easily solved. Ah, that all of our issues were so easily solved huh?
Wishing you a glorious weekend with many love-filled moments!

Peace and Blessings
Saysusie

Oluwa
05-21-2008, 06:21 PM
Kate,

Thinking of you...hoping you find your way back to us. The site was down and I am hoping you have this thread tagged for email...

Missing your energy, excitement and support...Still wonky?

Hugs,
Oluwa