A Letter

As we continue to spread lupus awareness I wan to share a perspective that many won’t ever hear or see from a lupus warrior.

A Letter To Family and Friends

~Author Unknown~

I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

I NEED TO BE SHELTERED dropped off at the curb and told, don’t try to do that, let me help you…. There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

I NEED TO FEEL PROTECTED even though I can’t be safe on the inside at least I can feel if ANYONE or ANYBODY wants to “get at me” then they are going to have to “GO THROUGH” my protector.

I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, “Let me empty the dishwasher”, or “so what do you need me to do?” I FEEL GUILTY when I can’t do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.

I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don’t say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

I NEED TO FEEL FORGIVEN for NOT being a full person (in the world’s view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don’t FEEL FORGIVEN, I feel guilty.

I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women’s clothes and homes and accomplishments.

I NEED TO FEEL AFFIRMED So many people scoff when I can’t “Do just this one little activity, and it IS EXPECTED.” I get tired of feeling guilty for not BEING ENOUGH to people that I don’t care about in the first place. When I rant over the injustice of my illness, don’t try to talk me out of it, or encourage me, just say “I KNOW, IT ISN’T FAIR, YOU DON’T DESERVE THIS”

I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can’t participate, so they forget about me, or just don’t even invite me. It is LONELY being ill over a long term.

I NEED TO BE ENCOURAGED the thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I am a spiritual person, I have great faith, but it can be overwhelming, especially when it’s implied “if your faith were greater, or if you would just DECIDE not to be sick…..” We HAVE ALL TRIED THAT – it doesn’t work.

I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company….I’m SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don’t even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don’t even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR, A THRIVER AND MOST OF ALL A WARRIOR. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn’t be sick all the time and unorganized and uninvolved. I know we don’t know what people’s lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

I NEED TO BE RESPECTED I am intelligent, I am attractive, I AM STILL beautiful…. It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I’m too tired to shop for them, and if I did shop for new clothes, I wouldn’t have energy to wear them anywhere anyway. I CAN DO THINGS, I just can’t prove it very often. I AM SOMEBODY not a disease, but this lupus sometimes overshadows my chance TO BE MYSELF.

I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn’t seem real or possible for a minute, almost shocking. I can’t do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

I NEED MY DIGNITY it’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON’T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren’t wearing lead ankle weights each day and trying to walk through neck deep water, this is what it really feels like. Everything is ten times harder for me than it is for you.

I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.

DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don’t know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan…at least we will have done something.

Love Yourself Beyond Lupus

“To be beautiful means to be yourself. You don’t need to be accepted by others. You need to accept yourself.”

~Thich Nhat Hanh~

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It can be a very hard task to love yourself beyond the pain that lupus brings, but it is necessary. There are a couple of steps that you can take to begin the process of just loving who you are beyond lupus.

1. Begin your day with love.
In order for you to get through the hard days you have to start your day in meditation and positive thoughts to saturate your being with love. You have to spend time focusing inward daily to clear the path to a better day beyond your pain.

2. Speak happy over you.
Yes it is difficult to deal and fight lupus day to day, that is the reality. You have to use positive affirmations sometimes just to get the day started in the most productive way you can. Don’t continue to self criticize yourself and make your moments even more difficult than they need to be.

3. Get honest with how you feel.
You have to get honest as to how you feel about your battle with lupus. Acknowledge those feelings and begin to process them so you can begin to heal emotionally. The masks you place to hide lupus must be removed in order for you to heal emotionally to deal with lupus positively and purposefully. Realize how important your emotional state is to healing your body beyond the constant pain.

4. Allow yourself to relax.
Breathe, relax and let go. It can be hard with the pain but it is necessary to stop fighting against yourself in order to understand and deal with your emotions during pain. You have to let your body and spirit rest before your body and mind force you to.

5. Be patient with yourself.
Stop blaming you for things that you had no control of. It is not your fault that you have lupus. Don’t be so hard on yourself that you create a double fight with your body and spirit. Be patient with yourself in going through the process of dealing with a chronic illness.

6. Accept Uncertainty.
Lupus is so unpredictable and as a warrior you need to accept that. It’s a hard pill to swallow, but it has to be accepted so you can live in your present moment in peace.

7. Forgive yourself.
Forgive yourself for being your harshest critic during your most difficult times. Having lupus is no easy feat but forgiving you for not being able to do when you want to will give you the strength to accept it all and move peacefully in your moments. Forgive yourself for judging you in the times when you need to love you most.

8. Be Real.
Be real about how you feel at all times. The time has come to stop hiding behind the masks of lupus. Be real with how you allow yourself to be seen, known and heard. Get comfortable allowing people in your world of lupus pain so you are not creating a super human to those who misunderstand what lupus is.

9. Focus on the positive.
Get in your head and heart that you are amazing beyond lupus. Yes you have pain which can create some major setbacks, but you are still able to fight.  Get positively in tune with you.

10. Seek professional help.
Lupus is hard to deal with and it can create in you a self-rejection and neglect that can be extremely painful. You deserve to be happy beyond lupus. You have a right to be accepted and loved by you. If necessary, seek help from a support group, counselor or coach. It will be the best investment you will make.

Loving yourself can be one of the hardest things to do while battling lupus. We get down on ourselves and notice every flaw. We focus on who we used to be instead of the greatness of who we are in this moment. You have to work at reconditioning your love of self. Begin to do what you need to do to make yourself feel good to make yourself happy. Don’t try  and be perfect, but be proud of who you are beyond the limits lupus imposes.

~Racquel H. Dozier~  #LupusInColor

Why Complain

WARNING IF YOU DON’T LIKE CURSING KEEP SCROLLING:

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

 

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A Glimmer of HOPE


I don’t like having lupus but, I have learned that nothing gets better if I ask why me. I just have to do what God has led me to do with it. I am thankful that I am given the opportunity to talk to people all over the world about it. I am thankful for the social media outlet to touch people I may never meet, but understand and battle lupus with daily. I am thankful for the opportunity to help someone through their struggle, to be able to give someone else a glimmer of hope in their day.
What a hidden blessing it has been and continues to be as it creates a stronger fighter in me for a greater good!

When I take this stand in my fight against lupus it creates an understanding in myself that, I have lupus, lupus does not have me! 

#LupusInColor