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Tohaveornot
07-17-2008, 10:13 AM
I'm getting a little frustrated with doctors and bloodtests and all of it!
Even if all my blood tests come back looking fine-- I still feel like crap and the symptoms persist. Part of me just wants to be diagnosed so that i can just feel better.

And now I feel horrible for saying that.

Because I am only 16 all the doctors brush me off like I am a little kid looking for attention and act like I have no idea what I am talking about. I'm knowledgable on Lupus and I know my body very well. It drives me crazy that nobody takes me seriously.

I hate my body for different reasons than all of my peers. While my friends whine about their thighs I am wondering if/when my thyroid will give out and if I will ever be able to have kids!

I am sick and tired of all the tests (and how long they take to come back) and I am sick and tired of feeling like crap!
I am so frustrated with missing out on living, and soccer and school because my body can't just do it's freakin' job!
Last year I missed 30 days of school, and I had to work so much harder to keep my grades up (I am proud to say I got 5 A's and 1 B).
I can't have that happen this year, and I don't want that to happen for the rest of my life.
I just want one doctor to take me seriously and fix me. I feel scared and angry and I love my mom, but talking to her just stresses her out.

I hate this whole stupid frigging thing. And I hate myself for letting it control me.

Thanks for listening.
-Hil

(stressed because her blood test results aren't in yet)

Saysusie
07-17-2008, 10:32 AM
Hi Sweetheart;

My daughter went through very much the same things as you. She had to finish her senior year of High School on Home Study because of her Lupus. When her Lupus damaged her heart, she had many doctors telling her that there could not be anything wrong with her heart because she was too young. By the time that we got her back to California (she was away at college) and in to see her personal team of doctors, the damage to her heart was irreversible. As you may know, my daughter succumbed to Lupus and passed away in 1999.
It is very frustrating to have to fight with doctors who do not believe you and have them dismiss you (for any reason). I know that you say your mother becomes stressed when you talk to her about your illness, but you may need to do just that so that you mother can advocate for you! You need someone to DEMAND that these doctors listen to you, believe you, take you seriously and provide treatment for your symptoms. In order to help you do that, you mother must become just as educated about this disease as you are.
Now, you are her child, there is no way that you are going to get around her becoming stressed. You must learn how to use her stress to your advantage. Educate her, inform her, and ask her to be an advocate for you in those situations where you are being taken for granted, dismissed or not believed. If you like, you can let your mother come here to read some of our posts so that she can better understand what this disease does and how if affects you. Otherwise, here is a very good book that she can read: The Lupus Book: A Guide for Patients and Their Families, by Daniel J. Wallace.
Please feel free to vent to us whenever you need to! We are here to help you as much as we can.

Peace and Blessings
Saysusie

Oluwa
07-18-2008, 02:04 PM
Hi Hil...

I hate this whole stupid frigging thing too...It sucks, It gets old doesn't it. Then we pick ourselves back up and go have at it again, because we are survivors, fighters..because we are strong..we have faith and hope.

Kick the bed, throw a pillow, scream...try to rip a phone book in half..then laugh about what you just did.

I've did it. I've screamed and stammered about the house.

I'm scared too...I wish I was there to give you a hug and let you know you are not alone in your feelings. Have you told your Mum you are scared...ask her for a Mum hug, even at 16 we need those, I did.

You can't hurry the tests, it is out of our control...but you can find fun, relaxing things to do to keep your mind off of them.

Know...don't stress over things you can't control and the things you can control, know you have control and don't stress over them, fix 'em....

Stressing only aggravates Lupus...that is one of the things that keeps it alive....

Ditto what Saysusie said...talk to your Mum....

Head hugs...
Love,
Oluwa

purplepinkgirl
09-22-2008, 11:30 AM
I am 22 years old and i was diagnosed wth lupus march 6th. these last couple of months have been very hard and different on my body and mind but i kept going. It seemed as if the lupus knew when to get me, whenever i was on a date with my boyfriend or out with some friends i would get sick, nausea, migraines, and very very tired. I got tired of it as well but i am a strong beleiver in a man that sits high and looks low, his name is Jesus. I have been through many scary times in life and he has always saved me. I believe he marked me with lupus to remember i am one of his angels....and so are you, he wants the strong ones ! I know it can be aggrevating to not get attention but whenever you feel that way just pray and pray for strenghth. It works for me and a few other younger girls i talk with. remember P.U.S.H (pray until something happens). I refuse for this to control me or keep me sad. Just hang in there........he wont put more on you then you can bare.

I really hope things get better for you ladies! stay in touch!

Laugh more and more everyday and all day!!!!! :lol:

cherie
09-26-2008, 05:39 AM
I really do feel for you i no how hard it can be i have been told repetadly i am deppresed then turs out i have sle and sticky blood.
I no it a pain in the ass waiting for blood test results i am waiting for my 3rd lot to come back i have had two allready both positive now waiting for this .
Me personally sometimes wish i went to appointments alone as i can get very emotinal ad hubbby makes me worse.
But dont give up i no its a pain but you will get a answer soon i felt just the same wanting to be diagnoised cause i was sick of people saying i was makeing it up
hug to you

sits_inthe_corner
09-26-2008, 08:54 AM
Hi Hil

Some doctors treat us like we are idiots no matter what our age or gender.

You are your best advocate. If they are telling you a load of bunk tell them it's a load of bunk and you deserve better from them.

If they cant give it to you, ask around talk to your friends and their parents about the doctor's they see and try to find one that is thoughtful and interested in getting to the bottom of what's going on with you.

You have everyright to seek out proper treatment and you have the right to be as healthy as you can possibly be...we all do.

Oluwa
09-30-2008, 09:08 PM
Hi Hil..

Just wondering how you are and how has life been for you since you last posted here? Much better I hope...

How is school thus far....

How were your blood results...

Thinking of you.

Hugs.
Love,
Oluwa