Feeling rebellious. I want to have more fun.

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/4/2008 12:43 PM (GMT -7)   
So hubby and I, for the first time ever, are going white water rafting tomorrow.  Hahaha, I can only imagine how much fun, fear, laughter and screams we're going to have!
 
I know I'll probably throw myself into a flare up, but it's worth it.  I'm tired of missing out on these unique and different opportunities just because of my lupus.  I'm done with playing it safe....I might be stupid to do this, but I don't care anymore.  I think I got the "balls" to do this kind of thing when I was in Disneyland/California Adventure a few months ago.  I tackled those crazy rollercoasters and loved every second of them!  I want more of that.  Anyone else feel that way too?  That you're just sick and tired of constantly evaluating what you can and can't do?  I'm feeling rebellious these days.  Maybe it's part of the unending cycle of grief we have.  Could this be a stage of grief?
 
Please say some prayers for us that we come out alive and kicking!! 
Ginny
 
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/4/2008 1:05 PM (GMT -7)   
Ginny.. I feel that way too sometimes, we can't sit back and watch the time go by, enjoy your trip I will keep you in my prayers. Hpoefully no flares. Have fun. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/4/2008 2:58 PM (GMT -7)   
Ginny, I can so very much relate to feeling rebelious against this disease and just wanting to live my life. I do sometimes think it's worth taking a little risk to do something really fun every once in a while. If a great opportunity to do something comes up I ask myself if it's worth maybe going into a flare to do it and if the answer is yes, than sometimes I'll do the activity.

My family and I have been white water rafting twice now - the past 2 summers in Colorado and it was such a blast. We tried to go on overcast days and I covered up with clothes and sunscreen. It wore me out, but it was so worth it.

I've been feeling rebelious too and have been trying to live like I'm not sick, but it's starting to take a toll on me, so I'd better slow down some. I do think the rebeliousness can have something to do with the grief cycle and the grief that we can't live like healthy people do and do the things they take for granted everyday.

Have a blast rafting and let us know how it was whenever you are up to it.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/5/2008 7:37 AM (GMT -7)   
I hope you have fun its def something you should do. I did it a couple of years ago, at the time I was really nervous but you only live once. And I feel thats it not fair that we are stuck with this disease that can take days away from us. So have a blast and enjoy!!!!
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 7/5/2008 7:57 AM (GMT -7)   

I read this post and just got the biggest kick out of it!!!  I wasn't going to post but I just can't help myself.  Please forgive me for barging in. 

Ginny!

You are so cool!!!  I love your attitude and it is so totally contagious.  Your thread made me want to do the same!  Your post reminds me to live our lives to the fullest and that sometimes in order to feel alive we do need to throw caution to the wind.  What is it about facing something we can't control (white water, big rollercoasters) that makes us feel we can handle an uncontrollable disease!!??  I truly think there is something to be said about that. 

So anyway, thanks for this.  I am sitting here with baited breath to read about how it went!!!  I was thrilled to read about your rollercoaster experience!!  ( I love those too ).  Please come back and tell us how it went!  Again, thanks for a cool thread that has reminded me to take risks.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/5/2008 9:23 AM (GMT -7)   
Hi Ginny,
   I hope your having a wonderful time today!!! Sometimes we just have to let loose to keep our sanity even if we pay for it later..... scool . Let us know how it went. You are in my thoughts and prayers sis!
                                                                        Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/5/2008 8:50 PM (GMT -7)   
HI Everyone!
 
Well, we had a blast today!  The rafting trip was awesome. No one fell out of the raft, but I did get thrown straight up in the air and came crashing back down in the middle of the thing..... The guide had to grab my life jacket so I wouldn't bounce out of the raft!!  Exciting and totally worth it, hahaha!  I'm exhausted, but in a good way.  We'll see how I am tomorrow, LOL!
 
The only nasty thing about the whole experience was the smell of the wet suits and rubber booties. BLECH!!!!  The only thing I can compare the smell to is a fresh hockey equipment bag..... If you've smelled that, you know what I'm talking about.  GROSS!!!!  Seriously, disgusting.  Even my cat ran away from us when we came in.  Hahaha.. No joke.
 
So I'm really glad we went.  I'll be doing more of this kind of thing for sure!
 
Have a great weekend everyone,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/5/2008 9:16 PM (GMT -7)   
Kudos Ginny! I say seize the day! Seize every opportunity to live and have fun and make memories with you family. I told my parents tonight that i'm through with living in fear! I'm taking one day at a time. Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/6/2008 8:09 AM (GMT -7)   
Right on Judy!!  I feel the same way.  No more *****-footing around.  We have life to live!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sweetcheekione
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 7/6/2008 9:13 AM (GMT -7)   
tongue  
   Hey Ginny...............I am glad you had a great time...........Your post is very inspiring for many of us......We go once a year way up North in Canada and do some white Water rafting ourselves with a few other couples.....Unfortunatly this year was unable to go to far from home until Dialysis is complete.  But your post did remind me of a quote My husband used on me in the hospital a couple years back when I wasn't doing well at all......And I try my best to live by it daily.........I say it to myself every morning as I struggle to get my body out of bed...good days and bad.
 
     "Don't be pushed by your problems............But be lead by your dreams"
 
Some days easier said then done.........But always a fantastic motivator to do what you can and not give in.
 
Thanks for your inspiring post ginny.............I remind myself of your rebellious attitude often and get a little snicker out of it as I start my days and choose to feel as you do yeah
     ~*Cheeki*~


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/6/2008 3:47 PM (GMT -7)   
Wow Ginny !!! Glad you had a great time !!! YUP . . . those wet suits can be nasty. We borrowed some when we went snorkeling a couple years back . . . but it was totally fun.

I did really well after the Mexico trip and the snorkeling adventures. . . . was glad we went.


But I've been working on my walking program (again) and had been walking about 1/4 - 3/4 of a mile 3x a day for a couple weeks and decided to go for a whopping 1.5 miles. I woke up the next day with really bad nerve pain in my back and down the good leg. AKKKKKKK!!! So it makes me hesitate to keep working on this walking program . . .

I'm glad you had so much fun and I hope you'll post tomorrow and for another few days after and tell us how you feel. Maybe I can live vicariously through your adventures.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/6/2008 4:44 PM (GMT -7)   
Wow you guys!  I had no idea this thread was going to be so inspiring to you.  I think we all need a little more adventure in our lives don't we!!
 
Well, I'm feeling "the burn" today.  But only in my left shoulder.  From all the paddling.  Otherwise I feel great!  In fact, hubby is more sore than I am.  Go figure!
 
I am bruised a lot on my shins though.  I look like a dalmation.  So I definitely took some abuse somewhere along the river!
 
Thanks for all your encouragement.  I have enjoyed reading everyones posts!  Now, get out there and have some fun!!
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/6/2008 5:37 PM (GMT -7)   
Dalmation !!! Funny!! Good visual Ginny!!

Your hubby is stiffer than you because he was trying to spare you from paddling . . . LOL !! I'm glad you are still feeling ok !!

Fun thread!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 7/6/2008 6:26 PM (GMT -7)   
This has been quite fun to read.  I too am tired of only having somewhat of an adventure.  Last week my nephew asked when we were going to the water park this year.  His mom gave me a weird look and said, "your aunt isn't going this year".  So, I have sun issues.  There are plenty of indoor water parks and I plan on going-probably in the fall when all the kids are in school.  I don't want to scare anyone with my "ultra white skin" :) 
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/6/2008 10:19 PM (GMT -7)   
Ginny I'm so glad you went I'm sorry you are brusied that sounds so fun to do. My husband just retired last week and we are also going to plan some trips, we all need fun in our lifes. Take Care..Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 

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