May 25 Lupus Fact

Butterflies of HopeFlight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!
May 25 Lupus Fact

An extremely difficult diagnosis such as lupus can put you into so many emotional phases. Finding coping methods is crucial to keeping a happy life after being diagnosed with lupus. Some of the very first feelings include frustration, sadness, anxiety, and fear of what’s to come.
This is your twenty-fifth butterfly of hope.
We need awareness and a cure!
Encourage everyone you know to let it FLY!
#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

10 Things

10 Things Should Know about People with lupus

1. They’re not faking it, the pain is real.
2. They’re not lazy , lupus can take a warrior down in an instance.
3. They often feel that they’re being judged since many of the scars of lupus can’t be seen.
4. They often feel like they’re being written off and are a burden to their loved ones.
5. They often struggle with a deep sense of shame and guilt for being sick.
6. Having a good day doesn’t mean they are cured it just means a flare has not taken them down for the count and they are feeling better for now.
7. Medications don’t always help, or take away the pain.
8. They have to work hard at loving who they have become in pain while mourning the healthier them that was before lupus.
9. Life as they knew it has changed and the adjustment is difficult.
10. They are the first fighters with the most loving hearts who look out more for others than themselves. #10Things #LupusInColor

From The Heart

Lupus Thoughts From the Heart:

Some people only want to support stars in their journey with lupus when their neighbor just needs a listening ear. Some people rather put an “L” in the air with a superstar than get in the trenches to support the star in their home. We can walk all day, raise funds all night but if we aren’t encouraging and helping one another through the hard times it means nothing. We can wear shirts, sport purple, scream we need a cure and adorn the metamorphosis of a butterfly, but when we are in the hospital holding dear to the IV that sustains us for the moment and saying the prayers that keep us for a lifetime those who are right by our side is what truly matters.

It’s a beautiful thing to spread awareness, but if support is lacking the awareness is naught. In place of throwing up an L, spreading a lupus banner on FB, sending a tweet on twitter, make a concerted effort to encourage, support and reach out to those closest to you that are fighting so hard every second of every day. #LupusInColor

Lupie Gurl Episode 7

Life of a Lupie Gurl.. Episode 7

Lupus really trips out sometimes. I mean really trips out. It’s like when lupus doesn’t see me for a day or so she comes back with a vengeance. So, today I went to get out of bed and lupus decided that my feet were all hers. I placed my feet on the floor, thought I had it made took a couple of steps and *BAM* I was greeting the floor. “Oh hello floor you are always there to catch me, I love you!” I couldn’t even cry, I could only laugh and think DAMN! I laid there as I laughed and said (in my Michael Jackson voice) “Lupus you really knocked me off my feet now baby *hee hee*.” I eventually got up and made my way to the bathroom with semi swollen sausage toes leading me into the day.

Life of a Lupie Gurl, its not always pretty but there’s no reason I can’t laugh it out.

That Lupie Gurl Classy, Sassy and a bit Smart Assy, beating lupus one laugh at a time! #LupusInColor

7 Tips For The Holiday

Seven Tips to Survive the Holidays With Lupus

The holidays can be fun, but they can also be stressful. While we all are getting so excited about seeing loved ones and hosting events, there can be real fears that can and will bubble up in side of us. There may be fears of missing out, getting sick, or not being able to reach expectations put on us by family members or friends. The anxiety can be high, the worry can be off the charts and the depression may increase.

It’s important as we battle lupus to take it one step at a time. To not become overwhelmed and to not overdo it. If you already find yourself in a crazed frenzy of the holidays, it’s time to take your life and holiday sanity back.

Below are some helpful tips that may help you in finding your calm in the midst of the holiday storm.

1. Remember, you don’t have to look at the whole forest. You don’t even have to look at a whole tree. Focus on the branch, the leaf, the bark. Breaking things down into smaller, manageable tasks is a great way to get started.

2. Make a realistic list. Divide it between URGENT tasks that must get done, stuff that can wait a few days, and things that you should do, but that can be done at any time.

3. Setting a time limit with a built in reward can be a great motivator. For example, put the dishes away while the tea kettle boils. Do a small task, like writing a thank you note, as you can while you wait for food to finish cooking.

4. Ask for help – Reach out. Ask others for help. It can be scary, but more often than not, people are grateful to help. People like to feel useful.

5. Take a deep breath. Take another. Drink some water and open the blinds. Put on fun music. Making your environment welcoming will help get you moving and ready to start the day.

6. Say NO. This one is so hard for so many people especially lupus warriors. If you feel yourself getting stretched thin, or there’s absolutely no way you can do one more thing, you can say NO. Remember you are not responsible for another person’s bad time management. You don’t have to be a “Yes” man or woman to try and please others.

7. PACE YOURSELF AND REST. This is hard especially for lupus warriors that may be feeling better and have some energy. Warriors tend to overdo it and then have to pay for it later on. I know many are excited, but it’s important to pace yourself and rest before you overdo it and end up in a bad flare.

Having lupus is challenging and when the holidays roll around it can be overwhelming and difficult to handle. The main thing to stay holiday flare free is to make it a collaborative effort. Don’t think you have to do it all yourself or make an extravagant party that will take you months to recover from. Let your need for perfection go. Remember, your first priority needs to involve doing what you can to protect your health. Don’t stress out and overwork yourself and you will have a nice holiday season.


It’s True

It’s True…. Your body’s ability to heal is greater than anyone has permitted you to believe!

I read that statement and said to myself It’s True! My body can be healed from all of the aches and pains if only I believed. Not only do I have to believe but I have to take responsibility for what I bring to my body through my mind, mouth and heart.

I have noticed as I go through this “tiny” battle with Lupus that I am more in charge of the little things going on in my body day to day. By the way I speak to myself and how I speak to this disease sets my tone for the day. Even when I have been feeling bad and lonely and like a waste of a good life, I have learned to really talk myself out of that mindset of misery. I know it sounds so simple but It’s True!

I have realized that if I tell my mind the way I want to feel, that I actually trick it to make my body feel that way. The mind is so complex, but can be easily led in the right direction to tell your body what to do if you work hard and consciously at it.

I’ts True, what I allow to get to me will ultimately be the demise of me, IF I give it that power over me.

It’s becoming increasingly important to me to heal not just my body, but my mind and soul from the terrible effects that Lupus renders on them. It’s not rocket science, I can do it if I just believe and realize that everyday doesn’t have to be a battle if I don’t make it one!

It’s true, no need in giving any power to Lupus through things I can control! #LupusInColor