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Posted 3/31/2009 11:59 AM (GMT 0)
Hello everyone

As you can probably tell I am a new member of the place. I personally do not have Lupus, however my little sister recently found out that she had it (via doctor visits and tests). Before recently I did not know too much about it thus kind of placing it the back of my mind. It wasn't til earlier did it finally hit me and I started looking up information. I am a grad student at the University of Kansas and my sister is a sophomore also at the same college. She lives with me and it is just the two of us; so I basically am the one that see's her and the pain that she's gone through as of late and her closest help/caregiver and support.

I was studying and heard her crying in her room; waking up in the middle of the night due to aches and I would guess inflammatory body pains from her descriptions. I got her some water and she eventually fell back asleep. I would say it was probably the first time it really hit me that she had Lupus.

So here I am reading around the forum and finding out information and anything that could help her adjust. I've read on diets she should be trying; so starting asap we will be going on it together. Working out schedules to her life to lessen stress and avoid being more fatigue than she already feels is also something we've talked about as well. And also the avoidance of direct sunlight; although that proves to be hard as she is a college student and walking around campus is a daily occurrence. Also moderate exercise was something she already did and was going to continue depending on how her body felt.

Lastly; I know she has recently started medication but honestly I do not know which type she is on. I've seen/read on this forum that there looks to be several different kinds. But she has started taking meds; which I hope help her better deal with it.

Well sorry for the novel but I haven't gotten much sleep tonight as I been doing a lot of reading between studying so I tend to ramble when I don't get much sleep. Thanks for your time for those who read this...

Jason
Posted 3/31/2009 12:55 PM (GMT 0)
Jason, Welcome to the forum this is great place to be many people have good advice. If she was just diagnoise she is most likley on plaquinel and on some kind of inflammatory med. I take celebrex to help me. The plaquinel takes about six months to start working she might feel better once that kicks in... What a kind caring brother you are to help her through all this!!! sunscreen is needed when she goes out also long sleeves I perfer white when summer comes around also a hat to pertect her from the sun. Hope this helps some.. Take Care
Debbie
Posted 3/31/2009 1:49 PM (GMT 0)
Jason,

Your sister is so fortunate to have you on her side. Many lupus patients have a hard time getting their loved ones to understand their illness, and sometimes families don't believe they are sick. It's a disease that is hard to understand and many lupies feel very isolated. You are a sweetheart and your sister is blessed to have you.

Learning as much as you can about lupus is one of the best gifts you can give your sister. At the top of the main lupus page here on Healing Well is a link to a Resources page that's full of information that you'll find helpful. Check it out - www.healingwell.com/community/default.aspx?f=29&m=184347.

My favorite website is the Lupus Foundation of America. www.lupus.org/newsite/index.html

Going to the doctor with your sister is a good idea as well. A healthy diet is essential to good health and you might suggest that your sister try going without gluten (wheat) for a couple of weeks to see if that makes her feel better. It has worked for a few of us.

I'm so glad you came to this site because having a support group can be very helpful to both you and your sister.

Don't apologize for having written a "novel" because the more you share, the better folks here will get to know you. We'll be here for you.

Hang in there Jason, and be assured that over time, with good medical care and self-help, lupies can learn to live with lupus and to not be defined by it.

I hope you'll stick around.

Pat
Posted 3/31/2009 2:05 PM (GMT 0)
((((((((((( Jason & Lil' Sis ))))))))))) I see the others have given you a good welcome and some good advice. I just want to welcome you to the forum. That night-time pain is a bummer. Not only because of the discomfort, but because it robs us of the healing sleep. We heal in our deep sleep . . . so finding a way to improve quality of sleep is important. Make sure she addresses this with her doctor/rheumatologist. I'm assuming that she does see a rheumatologist. If not, that would be really important. One simple suggestion would be to try an electric blanket or a heated mattress pad (NOT a heating pad - they can get too hot and cause burns if you fall asleep on them). Turn on the electric blanket or mattress pad about an hour before she goes to bed. When she gets into bed, it will be toasty warm and very relaxing. This will help her fall asleep and can relieve some of the inflammation. Another way to provide comfort/heat is to make some "Grain Bags". A grain bag is made by taking a man's tube sock and filling it 1/2 to 3/4 full with whole grain feed corn, dry beans or rice. I like the feed corn but its not easily available to some. Fold the top down about 1/2 inch and sew it. Fold again and sew a second time. Now you can pop it in the microwave. Try two minutes and then you will know if you might need to leave it in a bit longer. The grain bag is really soothing to painful areas and can safely be taken to bed. You can make several of the bags and use them as supports/props in bed too. They are so comforting. We call it "a hug in a bag". Your sister is really blessed to have you looking out for her. You might offer to go to doctor appointments with her. Bringing an advocate with us to doctor appointments tends to move things along faster. It gives the doctor a second perspective and you can help her recall some of the issues that she will forget because we just learn to live with things and forget to mention them. I hope your sister will join us here too!! Blessings!
Posted 3/31/2009 3:48 PM (GMT 0)
Hi Jason,

 

I wanted to extend my welcome to you and your sister.  The others have given you great information and advice.  I also agree that your support and proaction is going to be a huge benefit to her.  She also has to get proactive in her own care. That will come. She's very early in the diagnosis/treatment stage.  But the more she knows about her disease, the faster she will get better.  Knowledge is power as they say!

 

Stay in touch with us and ask any questions you need to.

 

Blessings,

Ginny

Posted 3/31/2009 3:49 PM (GMT 0)
Wish you were my brother! One thing you might want to do is to run your diet past her doctor. Sometimes we want to eat foods/supplements that indicate they "support the immune system". Lupus is already an overactive immune system and our meds are designed to suppress it. Turning around and trying to strengthen it just negates what our meds and our doctors are trying to achieve...and makes us sicker!! Cheers,
Posted 3/31/2009 4:52 PM (GMT 0)
Dear Jason:

Welcome. My brother and I were also together at college and we have always been very close, so I know how difficult your sister's illness is for you, how difficult it is to concentrate on your studies and activities and still have time to assist her. Bless you for being such a caring brother.....

Never forget what they say before every plane takes off: first put the oxygen mask on yourself and THEN assist others. This is not selfish. You must take special care of yourself and your own health so that you will have the strength to both study and care for your sister. When you need a break, personal time, extra sleep, do it. It's not selfish. It's just another way to be there for her. If you become ill, what then? So please, do take special care, and find 20 minutes each day where you can just be alone and quiet for a time. It will really help.....

What is your major (if you would like to share)? And what is your sister's name? The people here really care. We'll look forward to visiting with you again soon. Please give our best to your sister. And, I think, if she can't sleep at night and wants to chat, very likely someone will be here to answer....

Let us know how you both are doing. Thanks for writing.

Fiesta
Posted 3/31/2009 10:58 PM (GMT 0)
Hey Jason!!! Welcome...I admire how much you care for your sister. Like Lynnwood said, I wish you where my brother. Its great you are willing to change your diet to support her. Just make sure its doctor approved!
Everyone pretty much already said everything that I was thinking so I hope you stick around and let us get to know you better! Keep us updated!
Posted 4/1/2009 11:41 AM (GMT 0)

Hi Jason. Yep, you get tons of kudos for being a great brother! I just want to reiterate some very important things others have said. 1. Pat suggests going to the doc with your sister- giving your perspective will help the doc see how serious the pain is (and I too hope she's seeing a rheumatologist). 2. Lynnwood has a great point: do not eat foods or supplements that boost your immune system. I tried this and it was a disaster. 3. Fiesta said take care of yourself. Wow Jason, going to school is hard enough (I know). Please take time to do things by yourself, including lots of naps when needed. It's not selfish, it helps you maintain your strength. Love, Butterflake

Posted 4/1/2009 9:00 PM (GMT 0)
Hi Jason, Just wanted to add my welcome!
Posted 4/1/2009 9:31 PM (GMT 0)
Thank you everyone for the warm welcome! I don't exactly have a ton of time to reply to everyone but I did find out she is taking Prednisone. She just started a regiment of Omega-3 pills. I'm starting this diet with her so we are slowly cutting back on everything that is not healthy/would cause inflammatory. Tonight I will have more time to elaborate on everything.

Once again thank you everyone!

P.S. m y Sister is Lisa. :)
Posted 4/1/2009 11:14 PM (GMT 0)
Hi Jason & Lisa,

Just wanted to say welcome. Many of the replies above have already said what I wanted to say :) so I won't repeat it. You are a great brother for taking care of your sister and I really hope you and she find the support you need in the family here.

Stay strong!

Anne
Posted 4/1/2009 11:36 PM (GMT 0)
Hello everyone i am a new member ,and i am learning so much about lupus but i am confused, my ana results is 163, so my doctor wanted more test ran ,and now he said that i more than likely have lupus, im scared and how will i no for sure if i have lupus, i have three kids and i am single , but i do have faith in the Lord that he will bring me through this.
Posted 4/17/2009 2:20 PM (GMT 0)
God bless you Jason for trying to understand and help your sister. It will make her journey so much tolerable with someone like you to love on her. I cherish my friends who love on me when the pain becomes so very difficult. Tammy

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