Over the summer the support groups members have found some great ideas!
Rocky Mountain Sunscreen- sells sunscreen by the quart and gallon!
Bottom Line Magazine (http://www.bottomlinesecrets.com/) - has some fab health tips.
EMS - Eastern Mountain Sports- has sun protective clothing. For those in CT there is one in Fairfield. For any one in the eastern part of MA I found one in the Pittsfield Mall.
Word of wisdom from Dr. Craft (Rheumatologist at Yale)- Your on a medicine for your Lupus and you're feeling great it more than likely means you've found the right meds at the right dosage. Discuss it with your doc before you start playing with the dose or stopping.
Got any other great tips or remember more than I do from the summer lol- feel free to leave a comment and I'll post them!
Monday, September 6, 2010
Thursday, July 1, 2010
What foods are good for people with lupus?
Our first question from our friend Nancy!
What type of foods are good for Lupus folks to eat and what about alcohol (beer and wine)? Please advise.
My advice:
As far as what foods are good for people with lupus. I can tell you what foods are not all that great. Alfalfa sprouts are a no no, tomatoes I heard can be bad. Other than that I haven't read anything else. From a personal stand point I say listen to your body. I've found several foods that don't work for me. Wheat is a no no. I feel itchy and my joints hurt worse. Dairy - makes me gassy. Meat - makes me lethargic and so achy and when I ignore those symptoms I started to have really bad abdominal pain. And sugar makes my headaches worse and my joints hurt. None of this happened before my last really big flare. My advice is to listen to your body. It will tell you what doesn't work for it.
Alcohol. I don't drink so I don't really know. If it doesn't interfere with your meds I would think it would be okay in moderation.
If anyone else has any advice or comments please feel free to chirp in! We can all benefit from it!
What type of foods are good for Lupus folks to eat and what about alcohol (beer and wine)? Please advise.
My advice:
As far as what foods are good for people with lupus. I can tell you what foods are not all that great. Alfalfa sprouts are a no no, tomatoes I heard can be bad. Other than that I haven't read anything else. From a personal stand point I say listen to your body. I've found several foods that don't work for me. Wheat is a no no. I feel itchy and my joints hurt worse. Dairy - makes me gassy. Meat - makes me lethargic and so achy and when I ignore those symptoms I started to have really bad abdominal pain. And sugar makes my headaches worse and my joints hurt. None of this happened before my last really big flare. My advice is to listen to your body. It will tell you what doesn't work for it.
Alcohol. I don't drink so I don't really know. If it doesn't interfere with your meds I would think it would be okay in moderation.
If anyone else has any advice or comments please feel free to chirp in! We can all benefit from it!
Sunday, June 27, 2010
Travel Tips
Make only one list - any more and it gets crazy.
Remember anything you forgot can be purchased along the way!
Sunscreen, sunscreen and more sunscreen!
A good book - you need that down time to catch your breath
If you're a coffee drinker - bring your own- having a hard time finding a good cup!
Don't live by your plan- make detours!
Relinquish control and have a good time!
If traveling by car, try to travel at night or when the sun is going down. Even with sunscreen the sun exposure can be draining and throw you into a flare.
Remember anything you forgot can be purchased along the way!
Sunscreen, sunscreen and more sunscreen!
A good book - you need that down time to catch your breath
If you're a coffee drinker - bring your own- having a hard time finding a good cup!
Don't live by your plan- make detours!
Relinquish control and have a good time!
If traveling by car, try to travel at night or when the sun is going down. Even with sunscreen the sun exposure can be draining and throw you into a flare.
Friday, April 30, 2010
Enjoying the Sunshine
I've noticed when I go out in the car on sunny days I get so drained. I know it's from the sun. Any suggestions on what to do?
Thursday, April 29, 2010
I promise you!
I promise you this is not going to be a site that just lists study after study, but I do believe that without them we can't get help. ( and some of them pay well and it helps those of us who can't work) With that being said, there is another study I heard about. This one is in Mass. at Springfield College. Research on writing and lupus - to help them "learn about ways to help people better cope with lupus."
If your interested contact Dr. Laura Maggio at lmaggio@spfldcol.edu.
I have not participated in this one. But I heard about and am passing it along.
Dani
If your interested contact Dr. Laura Maggio at lmaggio@spfldcol.edu.
I have not participated in this one. But I heard about and am passing it along.
Dani
Wednesday, April 28, 2010
The WARNING!
Hello!
Wanted to take a minute to explain the WARNING when you log on. There maybe some sexual content in this blog. For those of us with lupus there are some sexual issues that no one talks about. It's like taboo. But not here! This is the safe place to ask question or state facts about this and any other issues. The disease itself affects some of us sexually. We're just too tired! And it can affect our relationships if our partners don't understand. Some of the meds we take can affect our libido. They don't warn us of this in some cases. We think it's us. And we don't talk about it. That's why I put the warning of adult content. No pictures. No pornography. No, I don't know, any thing negative you can think of. But I do want people to be free and for children with lupus this may not be the site for you. Thanks.
Have an awesome day!
Dani
Wanted to take a minute to explain the WARNING when you log on. There maybe some sexual content in this blog. For those of us with lupus there are some sexual issues that no one talks about. It's like taboo. But not here! This is the safe place to ask question or state facts about this and any other issues. The disease itself affects some of us sexually. We're just too tired! And it can affect our relationships if our partners don't understand. Some of the meds we take can affect our libido. They don't warn us of this in some cases. We think it's us. And we don't talk about it. That's why I put the warning of adult content. No pictures. No pornography. No, I don't know, any thing negative you can think of. But I do want people to be free and for children with lupus this may not be the site for you. Thanks.
Have an awesome day!
Dani
Tuesday, April 27, 2010
Hot info update!
Please contact Elena at 860-679-2167 for info on the Raynaud's Study at UCONN Medical Center.
Have an awesome day!
Dani
Have an awesome day!
Dani
Hot Info!
Anyone in the Connecticut area who is interested in participating in a study for Raynaud's Disease - there is a study at UCONN Medical Center, run by Dr. Naomi Rothfield. I actually participated and it was a breeze. They are still looking for people. I'm following up with the doc as we speak to get the right number for you to call. Leave a comment if you're interested!!! I love feedback!
Dani
Dani
Hello! Hello! Hello!
Welcome! I'm so excited about this blog. I'm always looking to try new things! I know for me in between support group meetings there are always issues or something I want to talk about and no one around who truely gets it. I figure we can get advice, feedback or just a hooray! when we need one!
Have an awesome day!
Dani
Have an awesome day!
Dani
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