Tag Archives: auto-immune disease

Have Lupus? Speak Up!

We have an amazing opportunity through a Lupus Patient-Focused Drug Development (LPFDD) meeting happening on September 25.

The Lupus and Allied Diseases Association, Lupus Foundation of America and the Lupus Research Alliance​ are joining together to host this meeting which will be driven by people like you and me who have lupus, and also caregivers to individuals with lupus. The meeting will help inform the FDA about what it is like to live with lupus daily, and also what kind of treatments we would like to see in the future. 

Even if you don’t live in the area, you can attend the meeting online to participate. BUT even if you can’t attend, there is a survey for you to fill out. There you can tell your story, voice concerns and give your take on new treatments. This survey will help with the planning of the meeting and also to form a report to the FDA. They are trying to get as many people with lupus as they can to fill this survey out, so please fill it out and share this with your friends and family so they can pass it along.

We are being given a great opportunity to have our voices be heard by the FDA and I hope we blow them away with the response from our community! We need to make noise! There is a critical need for more research, new treatments and ultimately, a cure — and this is one way we can work towards this.

Please fill out the survey and if you are able, attend the meeting (whether in person or online). 

Participate here: https://lupuspfdd.org/participate/

POP!

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Need to know exactly what lupus is? Go to: What is Lupus

I’m Putting on Purple today, are you?

Inflammation Fighters!

Inflammation is your immune system’s built in defense mechanism for fighting infection.  But when your body can’t turn off the inflammation (like with lupus, or other auto-immune diseases) or you give it too many inflammation-causing foods/substances, inflammation can run rampant and cause some serious problems. Researchers are finding that uncontrolled inflammation plays a role in obesity, heart disease and cancer.

What you eat day to day is very important.  But, with lupus and other auto-immune diseases it is very important to watch what you put in your mouth.  My goal is to start incorporating more of these amazing inflammation fighting foods into my diet every day! I hope you will join me.  Here are some of my favorites (and some I’d like to try)!

Fatty Fish

inflammation fighting food, salmon, fatty fish

All fish have some omega-3’s, with sardines, salmon, tuna, herring and anchovies leading the pack. If you’re like me and don’t care to eat a ton of fish, I try to make sure to take an omega-3 supplement daily.

Dark Leafy Greens

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Kale and spinach are your friends! Dark colored greens tend to have higher concentrations of minerals and vitamins.  Make a salad or throw them in a smoothie.  Add them to an omelet or some pasta.  You will hardly taste them… but eat enough of them and you will start to enjoy the taste!

Colorful Fruits and Vegetables

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Add some color to your plate!  The substances that give freggies their color- flavanoids and carotenoids, are super antioxidants.  Eat more berries (specifically blue and black), carrots, sweet potatoes, oranges, broccoli, peppers, squash and melons.  Beets have especially been shown to reduce inflammation, so add them to a juice or salad.

Ginger and Turmeric

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I haven’t done much cooking with these two spices, but plan on trying to incorporate them more in my cooking.  Turmeric works in the body by helping to turn off a protein called NF-kappa B that regulates the immune system and triggers inflammation. Ginger has been shown to help reduce inflammation in the intestines and be used to help with upset tummies.

Tart Cherries

cherries

According to Oregon Health & Science University researchers, tart cherries have a great anti-inflammatory effect. It has been shown to help athletes performance and can help reduce the use of anti-inflammatory pain medicines. Experts recommend eating 1 1/2 cups of tart cherry fruit or 1 cup of the juice per day to see benefits. I haven’t tried it yet, but am planning on getting some the next time I’m at the store.

 

What has your experience been with inflammation fight foods?

What are your favorites?

Have any recipes you would like to share?

How Communication Can Help Save a Life

322,000.  That is how many people are said to have lupus in the US.

Bloggers with lupus are constantly talking about awareness and education. But according to a study from 2012 there is a giant communication gap between lupus sufferers, caretakers and physicians.  We all need to work together to fix this problem.

It starts with the patient.

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But why do we allow lupus to make us into liars?

Sometimes we don’t speak of different parts of our illness because we feel judged:

The first time someone gives you a look that says they don’t believe you when you tell them you are tired.
Or maybe they cut you off mid-sentence when you try to explain a frustration with your illness.
When the pharmacist is practically tsk’ing out loud as you hand over your prescription for pain medication.
Yes, you try to eat well and exercise as much as you can. You aren’t just being lazy.
No, X Y & Z are not Miracle Cures for Lupus.
You have a rash, headache, and fatigue all in one day and you have zero reasons to get out of bed. But, this is the third day in a row.
Everyone gets tired, you should just deal with it.
Yes, you have to go to the doctor again this week.

You feel like a broken record.

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It is an INVISIBLE chronic illness.
It’s never going to go away (unless they REALLY do find that miracle cure).

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87% is a large number.  We need to be honest with those around us.  I’m not saying complaining about your disease every 5 seconds, but be honest when you’re really hurting and when you are really needing support.
You have to deal with it. Everyone around you has to deal with it. Which brings us to…

Caretakers and loved ones.

What was your first thought when you found out about your Lupies diagnosis?  If you took some pathology in school you might have known a little bit, but most people have no idea what lupus is.  Your loved one may be having some frightening signs and symptoms, but the diagnosis can be even scarier. This person will be dealing with this disease for the rest of their life.  How are both of you going to deal?

Some hard truths:

78% of family and friends of those with lupus describe themselves as “very supportive”, however only half of lupus patients feel that they are “very supportive” and only 33% of their doctors feel they are.  Unfortunately this says a lot about how family and friends of patients do not really understand or realize the severity of lupus.

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I know noone is perfect. There is a relentless battering of varying degrees of  illness, caretaking, doctors visits, different diagnoses, worries, life changes, and a multitude of unknowns. It can be rough on both the patient and the caretaker, as well. Though there is so much more research  needed to be done, please find out as much information as you can on your own.  It will help you to understand where your Lupie is coming from, what to expect, and to also help educate others.

And what of the physicians?

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I can’t speak for them. 72 % of doctors said they were not aware of the severity of their patient symptoms.  72%!!!! Only we can change that, Lupies. We need to be our own advocates. We as patients AND caretakers need to be forthright with physicians.

 

lupus awareness

I hope to see these numbers change in the future.

-Erin

A Breather.

When you have lupus, it can be so hard to find that fine line between doing what you can and doing too much.

I find I am too much of a perfectionist. Sometimes I really just try too hard.  I try too hard to do, I say yes too much. I try too hard to please. I go and go and go. And then I’m stopped.

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So this week, I am tired.  I feel down, a little physically and mentally.  Mother Nature isn’t helping me with all this ragweed, so I’m taking Claritin and Benedryl like it is going out of style.  

I’ve slept about 10-11 hours every night, yet still fall into bed exhausted.  I sleep and sleep and sleep. I feel like I could sleep right now.

sleep

My body is telling me to take a break, so I’m giving it one.  I’m trying to eat nutritious foods and not stress myself out about it.  

Sometimes you just have to let go of doing, and just take a breather.

Linking up!

Hi everyone! help-99085_640 

What blogs do you love?

I am trying to find more blogs to read and link up with! Anything to do with what interests me (healthy living, lupus, running, autoimmune issues, ERF-ing, etc.) would be awesome!  

Leave me a link to YOUR blog and a few others that interest you!!

 

Hope you’re having a fantastic day!!