Lupus In Color Blog
Be gentle with yourself as you battle lupus. You’re trying and if it takes you longer than you thought to achieve something or get somewhere that’s okay. Don’t compare yourself to others or who you were before lupus, because not everyone gets to where they need to be right away. You’re alive that’s what matters. Keep trying, keep fighting, because so far you’ve beaten lupus 100% up until this living day. #LupusInColor
People love to believe they can save you from lupus that they have the cure. That they can somehow pray it away. They often tell you that you haven’t prayed enough, that you didn’t believe in miracles and that’s why you aren’t healed. They claim full healing that other people they know with lupus have had and say you need to follow what they did, even though they still have issues they have never told them about. They say you’re not eating right and if you just exercised more you would be better. They tell you to have faith and remember at least it’s not cancer. Every now and again they’ll ask you what did you do to create this lupus thing and that maybe the sins of your ancestors are inflicted on you like you deserve to bear it all. You’ll sit and nod and smile and act like it doesn’t bother you. Later you will retreat to a corner in your home, most likely the bathroom in the shower, and cry it all out until the tears run dry. The next day you’ll get up and move beyond the pain and start your living beyond lupus and it’s pain once again. What they said to you yesterday won’t matter because you know that you did not cause this yourself, it was not created in you because of the sins of your forefathers, it’s not because of how you eat, it’s something very complicated that you have to deal with daily without any breaks from the pain or mental struggle in your fight. What they say won’t matter because you know you are stronger than anything lupus can put you through and you prove it day in and day out. #LupusInColor
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
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
Someone said to me to stop saying I have lupus because I make it so, that I manifest it more in my body. Now, I know words have power, but the reality is I didn’t speak lupus into my body. None of us did. Although I know how we see ourselves and speak to ourselves as we battle lupus is important, I also know that saying I don’t have lupus, when in fact I do, is detrimental to me doing what I need to do to treat lupus and beat it daily.
Just a note to those who mean well but don’t think before stating things that are harmful to those in this lupus fight, stop speaking from a place of the unknown. Every Lupus warrior has gone through a mourning period which includes the battle with denial to acceptance. You stating ‘stop saying you have lupus’ places one back into a denial stage. Lupus is not a person’s fault and it isn’t manifested in their body because they say what their diagnosis is. Lupus won’t just go away because a warrior doesn’t say they have lupus, if it was that easy we all would not have lupus.
Please be mindful of what you say to lupus warriors. It’s not an easy condition to deal with. We all understand we have lupus but it is not us and we don’t need anyone to try and make it seem so simple as to stop talking about it to make it go away. We appreciate your well intentions, but please understand all we have to deal with in our battle and only speak words that you know will strengthen us in our fight. #LupusInColor
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
Many may have gone through this, are going through this or have had these feelings. It’s important to talk it out and really understand your feelings and how it relates to what’s going on on your life. #LupusInColor
Video portion courtesy of Red Table Talk we do not own the right to the video or its contents.
HAPPY HOLIDAYS
Lupus In Color is providing Lupus Pouches for the holidays for lupus warriors that have monthly IV infusions. If you are a lupus warrior that gets IV infusions or you would like a lupus pouch for the holidays, please visit the link below, answer the questions, enter your name, email address and mailing address to sign up. The first 50 lupus warriors will receive a pouch. Below is a view of what a pouch will look like. Each pouch will contain items to help through infusions and rough moments with lupus. Limit 1 per household.
https://goo.gl/forms/9rTpXrTMr8JuSV3B3
I could complain about what lupus does to me, but what will that solve? I’ll say this though… Lupus you summummabish, I can’t wait until you rot in hell! You sick twisted bastard! Kick rocks barefoot and kiss my cocoa brown ass as I get up when you try and knock me out. You hit like a bitch and I’m shaking that crap off and continuing to live. EFF-U-CEE-KAY You Lupus! That is all. I think that was more productive than woe is me. I feel so free! *Flinging the mic across the room* … mumbling dis bitch gonna have me choke her out…. #LupusInColor
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
