Tag Archives: auto-immune disease

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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

ginger

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!!

I wanna hold your (cold) haaaaand.

You think you’re dressed warmly for the cold wintry day. You step outside and your feel your toes go numb.

You head to the refrigerated section of the grocery store.  You feel a chill and see your fingertips turn white, then blue.

Even holding onto a glass of ice water leads to you having to run your hands under warm water.

 

What was my first Lupus symptom? Raynaud’s Phenomenon.

Raynaud’s (pronounced ray-NOHZ) is a disorder that affects the arteries. Arteries are blood vessels that carry blood from your heart to different parts of your body. For people who have Raynaud’s, the blood vessels in the fingers and toes spasm and constrict when they get cold or you feel chilled so that the blood cannot flow to the appendages.  Usually it affects your fingers, but in about 40% of people, it affects the toes also.

So, once you lose the blood flow the affected areas turn white, then blue or purple. After the blood flow returns, your skin will turn red and can throb or tingle. Or be painful, which isn’t too fun. In really severe cases where the blood flow is stopped for an extended period, it can cause sores or tissue death (do NOT google this).

Raynaud’s without a disease causing it is called Primary Raynaud’s. My mom also has Raynaud’s and so I just thought I had inherited it from her. This is what I thought I had for years before being diagnosed with Lupus. Raynaud’s can also be caused by a disease (such as Lupus or RA), it is then called Secondary Raynaud’s.  Since my mom does not have a disease causing her Raynaud’s, she has Primary. Since mine is caused by Lupus, I have Secondary. Got it?

There are some medications available, but there are also simple things people can do to prevent attacks:

  • Keep your hands and feet warm. Duh. It would seem like a no brainer, but it is harder than you think. Having Lupus and Raynaud’s makes me run a little colder than normal people. Sometimes I just get CHILLED while warmly clothed and it causes me to have an attack. I have had them during the summer, while sitting on my couch with a blanket across my lap, even after stepping out of a warm shower. I have invested in gloves, mittens and lots of warm clothing. I just try to stay dry and warm!
  • Try not to have too much caffeine, and DON’T SMOKE.
  • Keep your stress levels low, as stress can cause attacks.
  • Buy hand and foot warmer packs and keep them in handy spots. They are super inexpensive and great to keep around in cold weather.

Unfortunately, it is possible that the more attacks you have, the worse it can get. I have learned that this is true. I’m hoping this winter to keep warm, and keep the attacks under control so I don’t have to go on yet another medication.

If you see me bundled up like an Eskimo or running with gloves on in 50 degree weather, you’ll know why!