Our Goal

Our goal is NOT to make you feel bad as you battle lupus.
Our goal is NOT to minimize anything you go through in your lupus journey.
Our goal IS to help you think a little differently so your stress will be less and your lupus flares will not be exasperated to a point of no return. Our goal IS to give you hope when you feel hopeless. To give you a voice when you feel no one hears you. To be a support when you feel all alone. #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.

#LupusInColor

Purpose In Change

Once you are diagnosed with lupus your life will change. It doesn’t mean it changes for the worse, but it will just change. Things that used to mean so much, will be replaced with things that you need to survive. People that used to take up so much of your time with nonsense, will be replaced with people that work to give your life meaning. The simple things in life will become the best things you’ve ever seen and life as you know it will be filled with special moments in pain that become the best times in your life to grow stronger. Life after a Lupus diagnosis will change, but it doesn’t mean it changes for the worse. Make it your duty to take every moment for what it is. Get up after you’re knocked down, wipe yourself off and begin again. You have changed and it’s okay. Your life still has meaning and purpose in your change. #LupusInColor

Deliberate Self Care

As you battle lupus you can hit some serious emotional ups and downs. You have to deliberately invest in some form of self-care and make sure it’s something that you know will help your mood. Also, remember that tomorrow is another day. #LupusInColor

Manage Lupus

4 Steps to Manage Your Lupus for Life

1. Learn About Lupus – Learn as much as you can about lupus and the effects it can have on your body. Don’t be overwhelmed or angry as you learn. Since lupus is a disease of varying issues it’s important to know that every lupus journey is different.

2. Know Your Lupus ABCs – A Know ALL of your tests and levels. Work with your doctor to find out what tests they are taking and why. Keep on track of your levels as they show inflammation and other things that happen in your body. B BLOOD PRESSURE If your blood pressure gets too high, it makes your heart work too hard. It can cause a heart attack, stroke, and damage your kidneys and eyes. C CARING for your self. Find out how you can properly care for yourself while battling lupus on a daily basis.

3. Learn How to Live with Lupus -It is common to feel overwhelmed, sad, or angry when you are living with lupus. Learn to cope with lupus through limiting your stress, eating healthy, being active and sticking to the plan of treatment every day.

4. Get Routine Care to Stay Healthy – See your health care team to find and treat any problems early. You will see many doctors, so make sure you are communicating well with every doctor and keeping them in your lupus loop together. Don’t feel intimidated to be your best healthcare advocate.

#LupusInColor

Dear Concerned Citizen

Dear Concerned Citizen,

It’s easy for someone to tell you don’t take the meds they are only making you sicker. It’s easy for someone to tell you that the pharmaceutical companies are making money on creating medications that make you dependent on them. It’s easy for people to pass judgment because you choose to take the meds that keep you alive and operational. It’s easy for people to say you should just go with natural products, or just smoke weed, or change your eating habits and you’ll be cured. It’s easy for people to say your doctor is taking you for a ride pumping you with meds that are obviously not working because you are still sick.

It’s easy when they are not battling day to day. When they don’t have to fight to do simple things like get up, brush your teeth, interact with your family. It’s easy when they don’t know anything about what lupus does to your body and how it can ravish and destroy the little soul left after pain killed the rest. It’s easy to say things that don’t help but hurt; Or to speak without thinking how it will affect the person that is not just sick but chronically ill.

It’s not easy to make the health choices you must make to survive to live a normal life in spite of lupus. It’s not easy to come to the conclusion that your life is forever changed by something that can potentially take your last breath. It’s not as easy as just doing a,b,c or d. If it was we would do it all simply and enjoy a cure. So many people give advice with no knowledge or skills that can assist.

So, before you decide to give unsolicited medical advice, please take a moment to think before you speak, know before you make judgement and learn before you tell others how they should take care of their own health. Your support is appreciated, your judgment and lack of knowledge of what my health care needs are is not.

Love as we Fight,

Lupus Warriors World Wide

Lupus Notes To Self

Lupus Notes To Self: You May be sad and stressed right now. Lupus may be getting you down, but please try your best to remember and believe that these feelings are not permanent. You are so strong, you prove this as you push through every day. You can get through this, take it slow, You’ll be okay! #LupusInColor

Take A Break

Gentle Reminder: Stop and take a break there’s strength in taking a break!

Most times, as you battle lupus, you have to slow down, regroup and recharge. Don’t take those moments for granted and don’t squander those moments trying to prove how strong you are. #LupusInColor