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Nonna
05-11-2011, 11:14 AM
Last night I wrote a very long post on this subject, but my wireless internet connection blew it away. I can't remember exactly what I said so I'm starting over.

I've been flaring, badly for me since Christmas. My emotional state has been terrible. I was living to go to work to pay for my meds. I had no Life. I sat in my room every weekend so that by Monday I could go to work. I had no fun, I had no Life.

Well last week I got hit again. My vision, which has been driving me crazy since November; it deteriorating. Probably from the plaquenil, I see the retina specialists next Thursday. I've been using 2 pairs of graduated lenses. and I can't see to drive the car after dark. By dusk my vision is going going gone.

Well after that I decided that I was going to start living again and to FRAK with the Lupus. Saturday I went to not one but 2 softball tournaments. I was up at 4:30 AM and got home the following morning at !:30 AM. Took my Metho and went to sleep.

Sunday AM I woke up feeling great. I had a bout of IBS, but only because I had french fries and Waffle House. ( Waffle House is an old fashion diner type place - a greasy spoon) restaurant.)

I had fun, I felt alive again. Yes I dozed in the car. Yes I was covered and used an umbrella. Yes I was hot... very hot. But I had fun. I saw my girls play. I admit that Bries Last game was impossible to see, I could see the girls but I could not tell who was playing where. But I felt great; I felt alive again.

My point for all this............
Are we letting Lupus rule us or do we control our lives?

I'm done letting Lupus govern my life. I'm going to live again.

Thanks for listening,
Toni

tgal
05-11-2011, 11:22 AM
I am so happy that you had a good time over the weekend. I know things have been really hard for you lately and I am glad you are finding a way to enjoy your life. I am currently preparing for my daughters 16th birthday this weekend! We have to have things to look forward to or there really is no reason to be here. There are times that I can't get out of bed but when I can I try to make the most of it just like you are.

Thanks for the wonderful post!

steve.b
05-12-2011, 03:30 AM
good on you toni.


i always try to enjoy life.
i have had enough of the bad days.
i know in 5 or so years, my body will be deteriated so much, i will be hospitalised,
so enjoy today, and help prepare your family for tommorrow.

tiggerlishus - Heidi
05-12-2011, 03:45 AM
what a great thread!! thats basicly how i try to live my life! we have jsut been on our first proper holiday together and my first in nearly 2 and half years!! we went to cornwall for a week thanks to dans parents who paid for for our engagment as we didn't have a party! we only had one lazy afternoon the whole time we were there other than that we were out every day walknig somewhere! ( i'll put some photos up at some point there were just soem gorgeous views! ) admittlying i'm paying for it now! but wouldn't change it for the world!!

Linda From Australia
05-12-2011, 05:28 AM
This is how I feel. I am so sick of having Lupus, and it has only been 10 months for me since I was diagnosed. All I can think about is how bad am I going to get. Other times I think about what I can do when I start feeling better, then I wait and wait to start f eeling better, and do nothing to enjoy myslef because I am waiting for when I get better ... then I can do ....

Well I drove myself crazy waiting, trying so hard to get better and to fight Lupus, and the result of all my hard work is the fact that I am getting worse. Now I have come to the conclusion that Lupus has won, it rules my life, tells me what I can and cannot do. So Lupus controls my life, but it does not control my emotions (well, not all of the time).

I LOVE teaching, but Lupus has caused so many difficulties for me. I cannot stand out the front of the class to write on the board, so I have a real cool stool to sit on so I can still write on the board. The kids also love sitting on my stool and at times write on the board for me when Lupus refuses to let my fingers work properly

I LOVE walking around the class and work with the kids at their desks, but Lupus doesn't like me doing that. But Lupus makes me bump into chairs and tables, and makes my hips, knees, ankles, feet and toes hurt when I stand and walk too much. So instead, circumstances have occured that I get to order a new desk. So I have ordered one with a conference end, so now I can get small groups of kids to sit at the end of my desk so we can work together.

I LOVE walking with my husband and dog, but Lupus makes my hips and feet hurt so much that my doctor and physio have told me to stop walking. So my husband and I go out for drives instead, and when I am not feeling so bad we go for short walks.

I LOVE watching my my TV shows, but Lupus makes me tired and makes me go to sleep just before the end of my programme. So my husband gets the series on DVD from the video store for me to watch my shows up to 5 or so times until I finally get to see the end.

I LOVED everything about my life pre Lupus, but Lupus has stolen what was precious from me. But that is OK, I have met some lovely people on WHL and I have met some lovely VERY OLD people at the pool, and they really like me because they can do so many more things than me, and can walk faster than me in the pool, and are really good at doing their exercises. One guy is over 90 and is faster than me. Lupus makes me so slow in the pool, and is slowly taking my muscles away, and makes me do all my stretches and water exercises in HUGE pain. But that is OK, because, what Lupus doesn't know is that I actually make all the old people feel younger than me. I am there to make all the old people look and feel good.

See Lupus is in control of my life, but my life is wonderful because I just have to be one step ahead of Lupus and turn all my agonies into so many joyous experiences and achievements.


Thank you Lupus for tryng to destroy my life, because you have shown me how precious my new life is. Like, when I can walk to the opposite end of the play ground without loosing my balance, I get really excited and have a huge smile on my face. I never used to smile when I walked across the playground, but now, I have a reason to smile, actually, everyday, I get to smile more and more.

Bonita
05-12-2011, 06:05 AM
i was diagnosised five years ago and i will be 63 this summer and the older i get the more problems with this diease comes along but i try to stay positive but it is hard sometimes. Hang in ther love Bonita

tgal
05-12-2011, 06:31 AM
This whole thread makes me remember why I love all of you so much

rob
05-12-2011, 09:38 AM
This is a great thread,

About two months ago, I decided to say screw Lupus, MS, and TN, and I set out on a new adventure that will take me from being a lifelong spectator of my favorite sport, and make me a competitor. My favorite sport, is NHRA Drag Racing. As soon as I get my problem with trigeminal neuralgia cleared up, and my neuro gives me the OK, I will be living life to the fullest at 170 mph, and flipping autoimmune disorders the bird with every pass down the track.

I just got sick of stewing and feeling awful about all the dreams that these stupid diseases have taken from me. I'm not getting any younger, so I decided it was time to pursue some new dreams, ones that have not yet been realized. I have dreamed of blasting down the quarter mile in a dragster since I was a little kid and saw my first race, and now, I'm going to actually do it. Come hell or high water I WILL earn my competition license by the end of this years racing season, and after that, the sky's the limit.

Frak autoimmune disorders!

Rob

Bonita
05-12-2011, 09:47 AM
You go Rob Bonita

tiggerlishus - Heidi
05-12-2011, 09:52 AM
that sounds wicked rob will want to see photos when you acocmplish it!!!

rob
05-12-2011, 10:59 AM
that sounds wicked rob will want to see photos when you acocmplish it!!!

Here's two pics to get started with-

My car-
http://forum.wehavelupus.com/album.php?albumid=304&attachmentid=3413

And a view of the cockpit-
http://forum.wehavelupus.com/album.php?albumid=304&attachmentid=3558

Nonna
05-12-2011, 04:15 PM
Glad to see that my rant was well received. I'm ready for more tournaments this weekend. I'm singing in the car. It's funny......... Tra Lalalalala hack hack hack
Have to dig out my warm up book, it's somewhere. Susie any suggestions?
I'll report about my eyes again after I've seen the specialist.

hugs to all

magistramarla
05-14-2011, 09:13 PM
Toni, Rob and everyone else,
Good for all of you!
This is exactly why I stay involved with The Monterey Bay Officer's Spouses' Club. If I didn't have those activities to force me to get up and get out, I'm afraid that I would spend too much time on the couch feeling sorry for myself. I find that doing things with the younger spouses is fun and challenging for me.
I'm slow, and I wobble along on my cane, but I've found that the young-uns are willing to help me.
I try to pace myself, and spend a guilt-free day on the couch in between days that I'm out and active.
I may have MCTD, but MCTD doesn't have me!
Hugs to all,
Marla

Nonna
05-16-2011, 12:42 AM
Just an update on my second weekend, it didn't go as well as the first. I'd completed the pred treatment for the asthma and this weekend was harder on me. Had spells every time I had to exert myself. Got mad at the umpires and other team's coach during to championship game so I went to the car. Coughed my head off from the exertion but did watch the end of the game from the parking lot. Aleah's team won. Maybe I am bringing them good luck by going. Sunday I slept all day and have now woken. It's 3:30 AM my time. But I'll lay here and rest so I can make it through the day. See the rheumy this afternoon. Need to call my PCP about the asthma

next Friday I'm off to my son's house so I'm living but at a slower pace.


Frak Lupus and all AI diseases

this is my 1,000th post WOW

steve.b
05-16-2011, 03:45 AM
did you go to the car, because you got mad at the umpires????

1000 posts and going strong..... you lion king

Nonna
05-16-2011, 03:56 AM
Yes I went to the car because I got mad at the umpires/referees. They made a bad call as far as I was concerned. The other teams coach then argued that their runner should have gotten sent to home for a run and that made me madder. So I went to the car so I would not loss my temper and make things worse.

steve.b
05-16-2011, 04:11 AM
nothing more dangerous than an angry nana.
i was a softball umpire...... you are a dangerous lady LOL

tiggerlishus - Heidi
05-19-2011, 07:56 AM
Here's two pics to get started with-

My car-
http://forum.wehavelupus.com/album.php?albumid=304&attachmentid=3413

And a view of the cockpit-
http://forum.wehavelupus.com/album.php?albumid=304&attachmentid=3558

sorry in late reply been offline for while jsut checked out pics!! and there fantastic!!! thanks for sharing! x

Nonna
05-19-2011, 08:01 PM
Ok here's the update on my eyes. He Ran tests with dyes and my retina vessels are fine. The reason for my blurred vision and no night vision has turned out to be the beginning of cateracts on both eyes. He said we now have a great baseline for future tests.

Starting another course of antibiotics; will lick this cough yet. Off to Milwaukee (Saukeville) in the am

good thoughts and hugs
Toni

tgal
05-19-2011, 08:14 PM
ohh that is good news! It means it isn't the plaquenil!

magistramarla
05-19-2011, 09:33 PM
ohh that is good news! It means it isn't the plaquenil!
Toni,
Isn't it a shame when we consider cateracts to be good news? I'm glad that you can keep taking Plaquenil, though.
Hugs,
Marla

tgal
05-19-2011, 09:35 PM
Toni,
Isn't it a shame when we consider cateracts to be good news? I'm glad that you can keep taking Plaquenil, though.
Hugs,
Marla

LOL Isn't that true Marla? It shows just how much our lives have changed!

steve.b
05-20-2011, 05:05 AM
cataracts will be cured, when they get bad enough.
lupus ................

Nonna
05-23-2011, 06:36 AM
My mother has had hers removed by lazers. I feel so much better knowing the reason that I'm seeing a little better. I've spent the weekend with my son and his family. We went to the Milwaukee Zoo; I walked to the train and decided I'd need a wheelchair. I enjoyed the rest of the morning. The little one are very lively, but lovable.