Lupus and Disneyland

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bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 7/1/2008 8:00 PM (GMT -7)   
Hey Everyone! My parents want to take me to Disneyland Cali this August for 2 days.. Im so excited! But we are all a little nervous about me having lupus. I am going to wear a hat and apply tons of sunscreen and try and avoid the sun! I have never been to any kind of Amusment park this big so Im really excited!!! I havent really been in the sun though so I dont even know if it affects me. Any advice for the trip?
Medications: Prednisone 7.5mg. Plaquenil 300mg. Naproxen (for pain). Multivitamin. Calcium. Fish Oil. Vitamin D.
15 years old. Lupus, Raynauds, and Hashimotos.


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/1/2008 8:57 PM (GMT -7)   
Good for you! I just returned from 2 days at Disney World. It was very warm but I still wore long pants and long sleeved shirts (lightweight cotton), applied a LOT of sunblock and wore a big "Indiana Jones" type hat. Perhaps not the most stylish of fashions but I did not get any burn at all.
That said, it is a lot of activity squeezed into a short time, so do try and pace yourself. Take frequent breaks and go into air conditioned shops, restaurants and rides whenever possible. Drink lots of water and don't be shy about letting the people you are with know when it's time for a rest! That way you can enjoy your vacation and avoid a flare after it's over ( flares often start AFTER the activity is over because we tend to "relax").
Have a great time. Take care!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/1/2008 9:03 PM (GMT -7)   
That would be a good trip for you I took my kid's there about 5yrs. ago they enjoyed it. There's no humidity, it's nothing like the east coast. Just keep yourself cover there is also buildings to go in too if the sun is to much, rest when you need to. 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.     
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/2/2008 8:20 AM (GMT -7)   
Oh Disneyland!!!
 
I love it there.  I'm a big kid at heart!  My hubby and I visited L.A for 9 days this past February. We spent a whole day at Disneyland. Like the others said, just pace yourself.  It's good you're going over two days.  You won't have to cram it all into 12 hours.  There's plenty of places to sit and rest in the shade.  Lots of places.  I wore a baseball cap all day and it really helped keep the sun off my head.  Some of the rides will get your a bit wet, so make sure you reapply that sunscreen when you get off those rides!  California Adventure is right there too, and it's neat if you like the thrill rides!! Woo hoo!!!!

Oh, and take the shuttle from the parking lot to the gates.  It's a massively long walk.  You'll be worn out even before you get started if you walk from the car.  The shuttles are free and you never have to wait for one.  Tons of them!! 
 
Have a super awesome time!  You'll really enjoy it.  I hadn't been there since I was 14 - 20 years ago.  So it seemed all new to me.  It was great!
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 7/2/2008 8:22 AM (GMT -7)   
Wooooo Hooooo !!! Have a blast!

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


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 7/2/2008 9:38 AM (GMT -7)   

Hi,  My husband and I just went to Disneyland on Monday.  We are going to Sea World today.  We are celebrating our 30th Anniversary and are staying at the Hyatt Regency Hotel in Anaheim.  Disneyland was great.  I only lasted about 6 hours but it was enough.   Someone told us to do this so we did.  We went to the City Hall at the main entrance and told them that I have Lupus.  I told them that I get tired really easy and sometimes can't stand for long periods of time.  They gave me a handicap pass which meant I could go to the handicap entrance for all the rides.  That way sometimes I didn't have to wait that long.  Other rides were quicker to just go the regular way.  But everyone was very helpful and they said that if I need help they would make sure I could get on the rides I wanted.

Anyway just a hint for something to try if you would like to.  Have a great time.  I love Disney.  I grew up in California and it is in my blood.

 

Mary Ann


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/2/2008 1:37 PM (GMT -7)   
Disney at night is wonderful. If you find the sun is too much try going at like 5:00 and staying until the park closes.
Sj

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/2/2008 4:26 PM (GMT -7)   
Have a great time!!! Yes, do cover up with lots of sunscreen, a hat and you can also carry an umbrella. Mary Ann's idea about a handicap pass is a good one and you could also look into a wheelchair if you find yourself getting really fatigued. Going to Disney is too great of an offer to pass up, just try to pace yourself.
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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mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 7/2/2008 6:39 PM (GMT -7)   
Before we moved to the midwest from Arizona, my hubby and I would take the kids to Disneyland every year. I would always reserve a scooter online ahead of time and get a handicap pass when we got there. Riding around on the scooter helps to save A LOT of energy. A wide brimmed hat, sunglasses, and lots of sunscreen are a must. Make sure you take your meds on schedule and rest when you feel tired and you should be just fine. Have fun!!
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
wife, mother of three


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/4/2008 9:32 AM (GMT -7)   

Hi!

I wish I could go with you!! We are tentatively planning on Disney World in Feb. Please consider using a wheelchair if someone could push. My husband got me one "just in case" when he had the opportunity to get a used one. We drove from NY and reminding myself to pace myself and not feel stereotyped to ride in one was so helpful, using one was simply a blessing. And Disney is so disability friendly. I could park it anywhere and the cast members would see it followed me through to the end of the attraction, and I could go farther and play longer since I saved my energy for fun stuff. Get a Birnbaum guide at the bookstore and map out your fun in advance. There is a code for each ride that lets you know the spinning or jerking rating, so I knew which rides I couldn't go on because of my cervical spondylosis, high b/p and ataxia, which are all bad on a good day. The sun is a killer and I am put a tote bag over the handles for my hat, a water bottle, a blanket, sunscreen and always wore long sleeves and pants. We often went to the Character cafe at the Contemporary resort for our breakfast, and stayed at Port Orleans last time. I asked my husband of 35 years if he would marry me again so I could go to Disney on a honeymoon and he said No!, but would go with me in Feb. We are going on Amtrak this time.

Have Fun! yeah


God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/5/2008 9:31 AM (GMT -7)   
 I hope you have a great time! The others had good advice for you. Take care and let us know how it goes. You will be in my thoughts and prayers.
                                                                                     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.


bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 7/5/2008 11:15 AM (GMT -7)   
I just wanted to tell everyone thank you.. the advice was great! I will update you on how it goes. Thanks!!
Medications: Prednisone 7.5mg. Plaquenil 300mg. Naproxen (for pain). Multivitamin. Calcium. Fish Oil. Vitamin D.
15 years old. Lupus, Raynauds, and Hashimotos.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/5/2008 8:55 PM (GMT -7)   
Oh, have fun tomorrow!!!!  We'll be waiting to hear how it all went!
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


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 7/7/2008 10:31 AM (GMT -7)   
Hi Big,

I just went to Disneyland for the first time in March. I had a blast. My boyfriend took me and I am one who is super sun sensitive and tires easily. We paced ourselves. He had been there prior and knew all plenty of places to hide in the shade. I wore a baseball hat. One thing also is I wore good sun-glasses, awesome sun screen, and we also have purchased me sun protective clothing. I know, sounds like something that would look tacky. But honestly, we went to REI, and I bought it in the kids section. I live in AZ, and my doctor recommended it. Its SPF 50, so I can still wear my cute tank tops, and throw this on over the top with capris or longer shorts and sun screen and protect myself. The best sunscreen I found was Neutrogena with heliocare 85 yeah

I hope you have fun, and keep us posted.

Leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/7/2008 12:13 PM (GMT -7)   
 How was Disneyland??  We'd love to hear how it went and how you did.  What rides you went on!!  Hope you're doing well today,
 
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

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