These are the times I hate lupus

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/30/2008 7:18 AM (GMT -7)   
For the most part I have been feeling pretty good for a while now.  This past week, my son had baseball tournaments and during the weekdays all the games were at night, so I didn't need to worry about the sun.  However, on Saturday and Sunday, the games were during the day.  He played four games on Saturday, so we were at the ball field from 1:30 to 10:30.  Luckily it was a cool, cloudy day and I slathered on the sunscreen and brought my umbrella and I did just fine.
 
My son played on two teams and both teams ended advancing to the championship games which were yesterday.  The weather wasn't so kind to me yesterday - it was hot and really sunny.  I put on tons of sunscreen and brought my umbrella, but by the time the second game started, I had an awful headache, my skin felt like it was on fire and I got really nauseaous.  I ended up having to leave about halfway through the second game (we live really close to the ball fields, so I could walk).  I was so upset that I had to miss one of the championship games because of this darn disease.  I was pretty sick for the rest of the day and had a really restless night of sleep. 
 
Overall, I feel like I have finally adjusted to having this illness, but when it gets in the way of things I want to do with my family, and especially with my kids, I still get upset.  I'm feeling a little better this morning but I can still feel the effects of the sun - I call it a sun hangover.  My neice and nephew are coming today to spend the week at our house, so I need some of my energy back.  Luckily they are both very close in age to my kids, so they will entertain each other.  My hubby is off work most of the week too, so that will help.
 
Thanks for listening to my vent.
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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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 6/30/2008 7:40 AM (GMT -7)   
((((((( Hippie ))))))))

I find that the sun affects are cumulative. Meaning, they add up over a period of time. Even the overcast doesn't help as much as we think. I know this is WAY harder when you have young children. I'm sorry you have to make such difficult choices. *sigh* That fitful sleeping seems to always come with exhaustion and flare. It just adds to the whole mess. I hope you recover fast.

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


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 6/30/2008 7:50 AM (GMT -7)   
Hippi,
   Bless your heart! When my kids were younger and playing sports and other outdoor activities I had the same problem. I always felt guilty if I didn't go and paid for it if I did go with the sun. I know this is so hard to deal with and I feel your frustration....((hugs)).
   I hope you don't go into a major flare from this. Please rest and take care. We can only do so much with this disease and have to sometimes depend on others to help us out even though we want to spend as much quality time as possible with our kids.
   Hang in there and please keep us updated. You are 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.


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/30/2008 8:34 AM (GMT -7)   
Hippi.. I know how you feel when my kids were in softball, heat, humidiy, sun got to be to much at times. I went as much as I could but other times I had to find rides for them cause of being so sick, I had a hard time dealing with that when I couldn't go. My hubby work swing shift so when he was on days shift he would take them. Their 24 and 20 now. Good luck and hope you can enjoy the games. 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
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/30/2008 10:06 AM (GMT -7)   
Hi Hippi,
 
I also understand exactly what you're saying. I hate how lupus robs us of special moments in our lives. It happens way too often.  I often feel like I'm missing out on so much of what life has to offer me in the way of exploring, travelling, spending time with family outside.  We always have to weigh the pros and cons even for a simple picnic..... I don't have children (thanks to lupus.  Another "loss" due to this blankety-blank disease).  But I can understand and empathize with what you had to endure and feel.  I'm sorry Hippi. ((((hgus)))).
 
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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/30/2008 10:28 AM (GMT -7)   
Thanks, Rosie, Babs, Debbie, and Ginny. I think I just needed a little vent. I had never thought about the effects of the sun being cumulative, but it makes sense. I think if I'm pretty careful I might be able to avoid a flare. Hopefully I'll sleep better tonight. I hate that restless type of sleep you get when you feel rotten.

Thanks again for the support. Ginny, I feel so bad that this disease has robbed you of the opportunity to have children. I need to try to keep reminding myself of all the blessings I have in spite of this illness.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/30/2008 10:53 AM (GMT -7)   
"These are the times I hate lupus" ... are there times I don't hate lupus? Have to think about that some!



It must be so totally heart-breaking not to be able to keep up with your children...hang in there!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/30/2008 2:49 PM (GMT -7)   
((((( Hippi ))))) bless your heart, you vent all you want!!! I had car trouble Sat and was out in the heat / sun for a couple of hours, ended up coming home and taking a 2 hour nap.... I hate lupus!!!!!!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 6/30/2008 3:01 PM (GMT -7)   
I agree with you.. I feel like I have a handle on things most of the time now, but every once in awhile too much sun or too much of anything will bring on a flare. I'm so sorry you had to miss some of the game because of it.
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