Lupus Mourning Stages

Stages of Lupus Mourning

We all experience them, will go through them and will get stuck in one or more of them….

Stages of Lupus Diagnosis and Management

DenialDenial
You know when you are first diagnosed you go through a denial period. I don’t have this life altering disease. I am healthy the 5 doctors I have gone to have no idea what they are talking about. I’m going for another opinion. I don’t have lupus. Hell, I don’t even know what it is…..

She's reached the end of her rope!Anger
This is some straight bull! How come I live a life that I do everything right and I get this disease? This is straight foolishness and I can’t stand the doctors for finding this shit in my body. I hate life, I hate my life I want to beat everyone just because after 10 doctors I have this fucked up disease…..

Bargainingbargaining-chalkboard
God, I don’t know what I did to deserve this but I’m sorry. If you heal me I will live a life that is stellar. If you take this disease away from me I promise to never drink alcohol, eat read meat, over consume sweets or cuss anymore…

 

 

depressionDepression
Oh My God I can’t do this I’m never leaving my house. It hurts so bad it will never get better. Please just let me lay in this bed all day, all night and cry myself to sleep and wake up feeling worse because no one understands and I can’t take it….

 

AcceptanceAcceptance Puzzle Piece Complete Inner Peace Admit Fault Shortco
WOW today is a good day. I feel like I am alive again. This lupus can be rough but I know I can do this if I take it one second at a time. “I have lupus, lupus does not have me!”

 

 

 

Stages of lupus diagnosis and management. You will go through them all, but your goal is to reach acceptance. Acceptance of having to live a new life in a new way with a new attitude. It’s okay to go through the stages as you battle lupus, but your main goal should be to go through them and not stay in the ones that will affect you negatively in your fight.

You can do it!!!!! Never give up!!!!

#LupusInColor

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~

love-yourself-cropped-600x400

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

Dear Concerned Citizen

Dear Concerned Citizen,

This may come as a surprise but your advice is not always solicited, warranted or helpful in a Lupus Warrior’s fight. It can sometimes be overwhelming and obnoxious to say the least.

It’s easy for someone to tell you don’t take the medications 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 medications that keep you alive and operational. It’s easy for people to say you should just go with natural products, or just smoke marijuana, or simply 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 medicine that are obviously not working because you are still sick.

It’s easy when you are not battling day to day. When you don’t have to fight to do simple things like get up, brush your teeth, interact with your family. It’s easy when you don’t know anything about what lupus does to a 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.

Dear concerned citizen, 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. It can be frustrating, heartbreaking and painful to endure.

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

#LupusInColor

I Am Powerful

I am POWERFUL Beyond Lupus Manifesto

I promise NOT to be too hard on myself.

HELL I promise to love myself abundantly.

I will remember that my self worth is NOT

Based on the things Lupus can do to me,

How much weight I gain from medications

Or any other stupid crap I can’t control.

I will empower other Lupus Warriors,

Be KIND to myself and keep a sense of

Humor even in the rough times. I will do

My best NOT to judge myself or feel guilty

For resting on hard days. I will remind

Myself to Hold On Pain Ends. And even

on my worst days, I WILL remember

I AM POWERFUL BEYOND LUPUS!

#LupusInColor

Lupus Warrior Stories

Lupus Warrior Stories

Many don’t understand the depth of what lupus can do to a person. Please take a moment to pray for this gentleman a Lupus Warrior that is fighting so hard for his life. Share this story with others and spread lupus awareness. Lupus is not an easy disease to deal with. Please pray for Jarael to get some relief and for his strength to keep fighting hard in his journey. #LupusWarriorStories #LupusInColor

Battling Holiday Stress

Stress is a normal part of life. Too much of it, however, can be taxing to the body. The holiday season is a time of additional stress for many people and it can be even more challenging for people with lupus.

Family relationships, finances, and the physical demands of the holiday season are all common triggers of stress. Holiday festivities mean spending additional time with family, which can heighten relationship issues for some people.

A good way of preventing holiday stress is by planning ahead and prioritizing. Try and work within the four A’s to get through with minimal stress and flares.

1. Avoid: Avoid the people and things that upset you or cause too much stress. One way of practicing avoidance is by saying no. You don’t have to be around those who you know will stress you our and upset your mood.

2. Alter: If you find that the normal holiday season routine is too fatiguing, alter your expectations. If loved ones aren’t respecting your needs, respectfully ask them to alter their behavior. You can also alter what your response will be and what your plans are. If being with family will cause you too much stress alter your time with them.

3. Accept: Acceptance is an important part of managing stress. During the holiday season, you may have to accept that you won’t be able to participate in all the activities you would like and that is okay. You don’t have to go to every gathering even if it’s your family.

4. Adapt: One way of avoiding stress is to adapt. Living with lupus often means having to adapt one’s lifestyle or plans; this is true during the holiday season as well. Go into the season with a mindset that you will adapt to any situation and remove yourself if you can not.

While the four A’s are excellent for managing the holiday season, they are also useful in managing the everyday struggles of lupus.

Control your stress level: Since some researchers believe that stress could be both a lupus trigger and a flare trigger for those with lupus, reducing stress is a must.

So at the end of the day remember, Just say no, delegate responsibilty, be smart and most of all take care of you.

You deserve the best in your holiday season, make a conscious effort to make the moments beneficial to your personal health.

#LupusInColor

Changes

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

A Day In The Life Of

Lupus In Color is presenting a day in the life of a lupus warrior.   A day to give a little insight to those that may not truly understand what lupus puts a warrior through.  It may sound a bit disjointed but that is the life of a lupus warrior sometimes.

It’s 3:41am the pain woke me out of a dead sleep. What’s funny is I couldn’t tell you where the pain exactly is. I just know it feels like my insides are in the worst war ever and my body is its war zone. I guess I’ll try and get up, go to the bathroom, get some water and head back to bed. Maybe the pain will subside. … to be continued. ….

well after tossing and turning trying to get comfortable in a fit of pain, I finally fell asleep. Hmph 3+ hours isn’t bad, I’ll take it. The sheets are soaking wet from sweat..gotta get up… It’s 6:54 and I have to get ready to start the day. Although the pain internally has eased up my joints are on fire. I sit at the edge of the bed trying to get up the nerve to place my hot painful feet on the ground. …easy does it…easy… whew…finally. …that wasn’t too bad. At least today the hot coals were cooled by good thoughts…. I sit……still sitting…..I’m gonna sit a little more just to be sure the hot rocks don’t strike…sitting…waiting….

Oh No, what time is it? It’s 7:03 I’ve got medicine to take….but I’m still sitting….waiting….

To be continued…….

It’s 7:30am… I was able to get out of the bed after swinging off the side for 20 minutes. I felt like a kid jumping out of mom and dad’s bed LOL. That was a great memory….. you have to enjoy those special moments even in Pain right? ….. anyway….well I stumbled downstairs not without difficulty though because I think I let the blood flow too long and my legs went numb… numb legs and blurred vision. I think this medicine I take has created some vision issues.. Mental note to talk to doctor… walking down the stairs…whooo  let me hold on I have some dizziness…just need to make it to the table……

it’s 11 am and I forgot to log in to update. . By 8 am I finally got to my pill box to get my meds.. the dizziness has stopped but I definitely will call the doctor. I mean I’ve only spoken to him three times over the weekend another time won’t hurt…. anyway. .. I was confused about whether the first medicine I take with food or without….. sheeesh this lupus fog is starting early. .. to be continued….

The day is getting better, I think….. Went out to get groceries and realized I forgot my list… was talking to someone and couldn’t remember the name of the book…THE CROSSROADS…. wait I just remembered that LOL…walked out of the store and I lost my keys and couldn’t find my phone…so I thought until I found my keys in my hand and I was talking on the phone. ..ROTFL sometimes you just have to laugh and roll with the day. At least I remembered my head  wait where are my groceries? 😳 …to be continued…

OMG this lupus fog has inundated my day. I found my groceries and had to make sure the bags were light enough for me to make the 15 trips from the car to the house. I had to sit in between just to catch my breath. The lupus fatigue is beginning to set in and is coming on like a ton of bricks…. finally finished and went to go to the bathroom…go to wash my hands and wondered did I take all my pills this morning? I shrug and look in the mirror. …Damnit. WTH is that on my eye…nooooooo not a lupus lesion right on my right eyelid looking like another eye.

Red. .swollen….itchy.painful… I sigh…then began to cry…sometimes my lupus life comes with too many ups and downs….today is one of those days….to be continued….

Its 5:01 pm…. just took my evening medicine… I had to count the pills in order to not let that fog to trick me…Lupus fog…lesions…..created a nasty headache. ..I know I should be cooking dinner but I just don’t have the energy. I’m gonna let the lupus fatigue take over and take a nap…

…to be continued….

9:45 pm…hmmm that nap felt so good makes me want another. I fell asleep in a cocoon of so many different emotions. A myriad of several thoughts…… awakened to being more tired than when I fell out. Lupus fatigue can’t be satisfied with just a nap. Good thing my son came to check on me. “Mom I made you some food sit up and eat. Dad is working late so I’m here.” My sweet son shouldn’t have to worry so much about me and take on a caretaker role. ” Mom…which medicines do you get at 10 I want to make sure I get them ready.” Acting like the man his father has been teaching him to be since day one. Lupus messes with your head when you see your loved ones having to be your great picker uppers….

…..to be continued……

It is 11pm and I took my last dose of medicine on time thanks to my 15 year old son. Last night I wasn’t able to sleep well and insomnia tried to keep me wide eyed. Sometimes insomnia is a nasty nemesis of mine and many other lupus warriors. It is a real hard hitter than can increase the lupus fatigue. … Tonight my husband returned from work, praised my son and prepared me some hot tea and lit some scented candles in an effort to relax me to fall asleep quickly and effortlessly. I look at my husband and wonder how I would have made it through these difficult days. He works so hard and is a great man, husband and father. I tell him how much I love him and am happy to be his wife. He smiles, places a kiss on my cheek and tells me, ” I wouldn’t have it any other way. Rest!” *cue overly stimulated emotions that come with lupus flares* I finish my tea as I listen to my husband’s day and lay down.

Hmph, although lupus issues have come and gone all day, I have to be happy just because I was able to live in it. I lay listening to my family in the other room laugh and discuss their day.

I realize at that point it was a good day in spite of lupus. .. It’s time to drift off to the voices.

Tomorrow is a new day with lupus..I’m not sure what it will bring but I’ll live in it in strength and power to beat lupus one second at a time.

… to be continued another day. … another place in time….

I have lupus, lupus does not have me!

#LupusInColor