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View Full Version : Hi everyone. My name is Lena. I am 39, no idea what I have!



lenadriver
03-05-2011, 02:40 AM
Diagnosed 18 months ago with Functional/dissociative neurological disorder. New doctor ordered ANA test with results speckled 160 a few weeks ago and on last Friday it came back with speckled 640. Still waiting on further results.
I am sick of thinking about this, trying to cope with my lack of functionality, relying on other people, sick of the judgements and I want to ride my bloody horse!!!!
Sorry, that feels so negative but awesome to unload!!

How do you embrace your condition, learn to love yourself despite your body letting you down and just focus on the good around us rather than being consumed by your condition?
I have a beautiful 8 yo son, I am living life long dream, my dream of being a horsewoman(although in the dream it is me training, not my trainees who I haven't been well enough to train enough!).
How do I get back to being the happy, positive person that I am?

kim,l
03-05-2011, 03:08 AM
welcome lena to whl and its alright to unload on us we all do here we all experience days of being fed up with our body and our doctors and the whole world but we are a great bunch of listeners i am sorry you are feeling bad you takeone day at a time some days will be good and some bad we learn to just adjust our lives i know it is hard and it takes time but eventually it becomes easier to except that things are different but you can still have a life and feel free to unload anytime you want hugs kim l from sydney australia

tgal
03-05-2011, 06:11 AM
Good morning Lena and welcome to WHL! We are so glad that you found us. The question you ask is the same one all of us ask at one time or another. Once the meds that you are on begin working and you learn the things that make you feel bad you will feel better. It also important to have a place to go where you can talk about your feeling. That is why we are here!

You will get to feeling better. It is not always quick but I promise that you will learn to have a life even with this disease. Once again, Welcome to our family!

rob
03-05-2011, 06:22 AM
Diagnosed 18 months ago with Functional/dissociative neurological disorder. New doctor ordered ANA test with results speckled 160 a few weeks ago and on last Friday it came back with speckled 640. Still waiting on further results.
I am sick of thinking about this, trying to cope with my lack of functionality, relying on other people, sick of the judgements and I want to ride my bloody horse!!!!
Sorry, that feels so negative but awesome to unload!!

How do you embrace your condition, learn to love yourself despite your body letting you down and just focus on the good around us rather than being consumed by your condition?
I have a beautiful 8 yo son, I am living life long dream, my dream of being a horsewoman(although in the dream it is me training, not my trainees who I haven't been well enough to train enough!).
How do I get back to being the happy, positive person that I am?

Hi Lena,

Welcome to WHL. Coping with chronic illness can be a really difficult task. And staying positive isn't easy either. I have both SLE and MS, and it's an uphill battle to be sure.

One of the things I do, is to realize and accept that I'm not going to have a good day everyday. But I don't let the bad days taint, or somehow cancel out the good ones. I wouldn't say that I embrace my illness, with me it's more like tolerating it, and I have a grudging respect for what it can do to me if I'm not careful in how I live my life.

Don't get down on yourself for not being positive all the time. We're all allowed to have bad days. I might not be able to be a positive person and feel well 7 days a week, so I shoot for being OK 3 or 4 days out of the week. And when I have those good days, I live them like they were my last. The good feelings, memories, and accomplishments of the good days help me to get through the bad ones. And telling myself that there are still plenty of good days ahead gives me something to look forward to.

I know it sounds rather simplistic, but it works for me.

Rob

PS-You need not apologize for unloading, that's what we're here for!

lenadriver
03-05-2011, 12:52 PM
Thank you every body. All your comments help. Until I read your replies, I didn't realise how alone and isolated I was feeling. I am crying tears of relief and happiness right now. And it has really helped to shift my guilt. God bless you all.

GoodDog
03-05-2011, 01:08 PM
Hi lenadriver and welcome. There's something special about this group and how just writing about our feelings lifts the weight off our shoulders. I've learned that it's a safe place to vent and whine and then move on with my day knowing there are people that care and are going through the same things.

rob
03-05-2011, 03:11 PM
Thank you every body. All your comments help. Until I read your replies, I didn't realise how alone and isolated I was feeling. I am crying tears of relief and happiness right now. And it has really helped to shift my guilt. God bless you all.

You are definitely not alone. I know that a website isn't the same as being face to face, but the words you read here are as real as the people who write them. There's always "a light on" here. This place is always active, and there's always someone to talk to here. Whenever you feel the need, there's plenty of folks who are happy to listen.

Rob

magistramarla
03-05-2011, 08:38 PM
Hi Lena,
Welcome to WHL. As others have told you, we all learn to accept the bad days when we have to stay on the couch. (A cuddly cat helps me.) On those good days, when the meds are doing the right thing and all of the stars are aligned (LOL) we go out and do what needs to get done.
I love horses, too. I'm weak and non-athletic, but riding a horse gives me a wonderful feeling of being powerful and on top of the world. You are truly lucky to have horses.
BTW - The very first person with lupus that I ever met was named Lena. She was my friend's sister and I met her about 25 years ago. My friend explained the disease to me.
I guess that gave me a bit of an advantage when I was dx'd with it and a few other autoimmune diseases a few years ago.
Hang in there, and you're welcome to vent here anytime.
Hugs,
Marla

~LUVMYFLOWERS~
03-06-2011, 04:34 AM
Hi Lenadriver, And welcome to whl! Marla,Rob,Good Dog, & Mari have given you some
wonderful advice, Youre never alone here and there is always wonderful & careing people here
anytime you need to vent, talk, ask question's etc!! For me it took a while also to regroup
pick up the pice's and accept the new me, learn a new way of life and how i do things,
what makes me sicker if i push it to hard, and thank God each day for what i still can do
even though it's not even close to what i use to be able to do & TAKE IT ONE DAY AT A TIME!
And for me even though my newe'st diagnosis is a kinda poor one due to dr's not knowing
or careing I can ALWAY'S see someone that is worser off than me.
Big Hug's to you! And im so glad you found us!! ~Diane~

lenadriver
03-06-2011, 01:03 PM
Wish me luck, guys! I am off to the Austin today hoping to get some answers.
Had a lovely weekend with kids in the sunshine, I hope the sun helped you guys too!

tgal
03-06-2011, 02:38 PM
Hey Lena! Are you in Texas as well? If so, where are you going in Austin?

~LUVMYFLOWERS~
03-06-2011, 03:21 PM
Wishng you the best of luck with your doctor appt. And hopeing you get some answer's.
Best of of wishe's to you!!!!!!!!!!!!!!!!! ~Diane~

Peridot20_Gem
03-08-2011, 01:22 PM
Hi Lena,
Welcome to the WHL and you've had some lovely welcomes already off our member's.
The diseases come different for each and everyone of us but learning to cope with what you have his a large test and a good many manage to do it and some are not so good and that includes myself.

Please get back to us and let we know how it went at the Doctor's and best of luck from me also.

Hugs Terri xxx