It's not always easy comforting our loved ones when they are suffering from a chronic illness! If you are like me, you don't always know what to say, and then eventually end up second guessing everything you already said! It's completly normal! We care for our loved ones and don't want to upset them.
The Lupus Chick published a list of 7 Tips to help us! I love all of the tips they gave us, but I have to say number 3 is my favorite. I think sometimes we are quick to try and make the person we are talking to realize that other people have it worse but sometimes that may come off the wrong way, and end up offending them. Check out the full list of tips here!
Which one did you find most helpful?!
A small pharmaceutical company based in Canada is developing an immunosuppressant for the treatment of lupus nephritis. This company is conducting a study to demonstrate its efficacy and safety when taken orally twice daily when compared to a placebo. The duration of the study is about twelve months and consists of about 13 visits to the study clinic for that twelve month duration.
As a volunteer, you may or may not benefit from taking the study drug, but you will be contributing to research that may well help those suffering from lupus nephritis in the future. Volunteers will also have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.
There are a dozen clinical sites participating in the study located in the United States. The website linked below will give you more information and tell you how far away the closest clinic to you is.
For more information about the study click here!
We have all heard about it or have had someone tell us they have it...but what is brain fog?! We all have times where we forget to do something, or forget where we put something, but you may be experiencing more than just forgetting a few things here and there! You may be expereincing Brain Fog!
Molly's Fund posted an awesome article that breaks down everything we need to know about brain fog! Check it out here!
Hope it was helpful!
Have any of you noticed a significant price jump in your Plaquenil? I honestly had no idea the priced jumped so high until I read it over on Sara Gorman's Blog, Despite Lupus!
My advice to you would be to shop around! Even if that means looking for coupons that your pharmacy will accept! Be sure you are paying as little as you have to!
Check out Sara's post here!
Best of luck!
We all know to well that many times, Lupus patients can be frequent flyers in the Emergency room! It's like the least pleasant place to be for sure, but you need to be there to get treated! The Lupus Chick published a list of helpful tips for the emergency room! I think that all of her tips are spot on!
My favorite being, tip #5 don't hesitate to ask questions! You are your own heath advocate! You need to know what is going on with your health! So, ask ask ask!!!
Check out all of her tips here!
I am literally so in love with these!!!! Have you seen this stylish way to carry your meds around?! Seriously check it out here! They are super cute, and just look like a little wallet! Like what an amazing idea! I stumbled across this, and just had to share!
Sara, you go girl! I am loving the blog! Keep it up! You rock!
Hope you loved them as much as I did!
Hmmm maybe we need a giveaway soon?!
Did you that the Hospital for Special Surgery offers Teen and Parent Lupus Chat Groups?!
Teen and Parent Lupus Chat Groups is a monthly in-person chat group for teens (14 to 18) who have lupus and their parents. Parents of teens with lupus meet separately at the same time. The groups offer informal discussion, support, sharing of experiences, guest speakers, group activities, and celebrations. Close friends and family members are welcome.Both groups meet the third Thursday of each month from 6pm to 8pm at alternating hospital sites in New York City.
For more information click here!
Do you take Plaquenil to treat your Lupus symptoms? It seems to be the go to drug with a great deal of Lupus patients! I know this is what my mom takes daily. I also know that a close family friend was taking Plaquenil to treat her Lupus symptoms as well, however she needed to stop taking it because she was loosing her vision.
My mom goes for eye test regularly, and to date, her vision has remained the same!
It is so IMPORTANT to follow up with your ophthalmologist regularly!
Molly's Fund has posted an article packed full of information for those taking Plaquenil! Check it out here!
I don't know about you, but I feel that everyone's opinions on this topic are mixed. I have had my mom's rheumatologist tell me that I am not at any risk of having Lupus just because my mom has it. However, I feel that many times I hear about multiple family members having the disease.
While I have not been given a diagnosis of Lupus, like my mom, I have many of the symptoms. I have a positive ANA test and regular blood tests and check ups!
So what do you think? Do you feel there is a link between Lupus and your genes?
Here's what the Lupus Foundation of America has to say!