Warrior
Remind yourself of what you’ve been able to overcome. All the times you felt you weren’t going to make it through, you proved yourself wrong. You’re more powerful than you think.
I felt a strong pull in my heart to share my experience with Lupus publicly versus in a private journal in an effort to raise awareness of this disease.
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As someone who suffers with anxiety, I feel for everyone dealing with it on their own. During COVID-19. During racial injustice. During political blame games. Watching the people who are supposed to protect and serve us are murdering our brothers and sisters and not being held accountable. How do you cope?
Here are some tips I’ve found, and some I use for myself to help manage my emotions. Hope this helps someone.
Breathe in slowly. Hold for a few seconds. Exhale slowly. Repeat.
Drink some water.
Eat if you’re able.
Release your shoulders down from your ears.
Cry if the tears are welling up.
Reach out to a friend.
Watch something funny.
Take care. Know you are loved.
Summer used to be my favorite time of year. Beach trips, outside games, sunbathing. Nowadays though, summer is the season I fear the most. I’m uncomfortable due to my body’s inability to regulate my temperature. My body temp usually runs high so any temperature rise makes me miserable. I’m forced to hide indoors thanks to photosensitivity. Long sun exposure makes me exhausted and causes a lupus flare. I’m allergic to bug bites and I’m convinced every mosquito nearby can find me. I feel betrayed by my own body. Lupus can steal our sense of self when we become someone else. What changes are you having trouble coping with?
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I keep thinking I’m doing all of the work needed to improve who I am, but then one trigger can set me off and I’m brought back to the realization that I still have some ways to go. One thing that I thought I could brush over and never have to worry about was letting go of my past hurts. I was holding on to these, unintentionally, to protect myself from feeling that pain again. I’m learning that to let go, really let go, I have got to allow myself to feel the pain of each experience and reword it in my mind as a positive. That has helped me change my automatic thoughts into a positive thought.
I take what triggered me, for easy example: I made a mistake at work. My automatic thought would go straight to “I’m going to be fired. I always mess up. I’m no good at this job.” and I would SPIRAL. My new process is replace those negative thoughts, with rational new thoughts that can improve my whole mood: “I messed up, but mistakes happen. I will work through this, like I always do.”
I had to look at my past with a toxic marriage and do this same retraining to start really letting go. For the last few years that I’ve been separated I was minimizing my experiences to avoid all the pain I went though while with my ex. Tolerating a physically and mentally abusive narcissistic man for years because I had this drive that it will work if I just did more. Loved him more, took care of him more, looked better, was more fun, allowed him out more. It was always something that I was blamed for when reality was, he just wasn’t a good person. I thought by finally leaving the relationship I was going to be better but while it helped, I was still mentally trapped. I thought if I talked trash about him it would make me feel better but it really just brought me down to his level and I was still mentally trapped. I thought if I dated I’d feel better but since I was still mentally trapped, I was dating men who were similar to my ex. If I didn’t talk about him at all, or if I tried to peacefully coparent, but then I wasn’t acknowledging I was hurt.
So today I let go and let God help me heal my pain. I acknowledge what I went through. I’ve cried over the loss of my dream of keeping my family together. I’ve cried over the pain I felt, physically and mostly the mental pain and loss of trust. After I let those tears go I acknowledge that I am still standing and I’m stronger than before knowing what I have overcome and nothing can bring me down. I am responsible for my own happiness. You can add to it, but nothing can bring me down. This is one of my mantras I repeat daily to retrain my mind. I know I’ve still got a long way to go but I’m grateful to be where I am in this moment.
Sometimes self doubt can really mess us up.
Doubting your potential.
Thinking you cant hang with people that have MORE than you or have “greater success” stories.
If you ever wanna grow then you HAVE to be okay with being uncomfortable.
You have to be okay being the “different one” out the group.
Not being afraid of asking people “how they made it here”
Not seeing others as COMPETITION but as INSPIRATION
I’ve seen people almost RESENT their “friends” because of their success.
The past couple of years I have been surrounded by some amazing people. People that have been nothing short of a HUGE influence in my life. People that don’t mind answering questions I have. People that SHARE HOW they did it.
I love being in a room full of people with major accomplishments. What’s funny is… there are things in life I’ve viewed as small accomplishments but someone else thinks it’s GREAT!
Also remember a lot of times, it’s WHO you know!
“I stopped feeling as if I didn’t belong anywhere, and realized that I belonged anywhere I WANTED to be”
“We have to be uncomfortable before God uncovers your destiny because elevation is always proceeded by pain.”
Two years ago I was told I have diminished lung capacity due to Lupus attacking my lungs. I have scarred tissue that prevents my lungs from expanding to 100% so I get shortness of breath doing simple things. My lungs operate at about 60% and I tend to get fluid in my lungs often. Breathing is a struggle as is but I’m more prone to pneumonia or respiratory problems. I was told I could have a surgery to scrap the scarring off my lungs (with no guarantee it would work) or get a lung transplant. Based on my past history with medical procedures I postponed any follow up treatment.
I maintained my disease and honored my body’s restrictions. I became comfortable in my position though and remained stuck in self pity with the excuse as “this is painful”. I lost my motivation. I lost my drive in life. Slowly though, I’ve come to learn that I must get comfortable being uncomfortable. I try to push myself mentally and physically.
So today, a girlfriend took me hiking with our oldest boys and I was determined to make it up to the top. It’s a 2 mile hike with pretty steep inclines, but I did it baby. I stopped. I almost threw up. My friend was encouraging me & supporting me the whole way. We all need encouraging friends like this by the way. I can be strong by myself but when you have the right people in your tribe, they help guide you along the way.
My point is this: Don’t let circumstances command your life! I heard Pastor say that this morning and it spoke directly to me. We all have some circumstance that is holding us back in life. I know I’ve let Lupus hold me back from being who God says I am. I’ve felt defeated. I’ve felt bullied. I’ve felt lost. I still battle with self destructive behaviors some days. But I won’t give up. How can I defeat a bully I don’t stand up to? So today as I sat at the top of this mountain, I felt encouraged. I felt accomplished.
Letting go of what no longer serves me. Allowing myself to feel the pain, because I know that same pain will help me grow. 🧘🏽♀️
So throughout this whole pandemic I’ve continued to work at my job for so many reasons I made it make sense to me. I was unemployed for going on 3 years because I took a medical leave of absence and my job then fired me so I had a fear of, if I do that again the same thing would happen and I’d spiral back into a flare up and depression. I work for a health clinic so they take extra precautions, I’d be safe. I need the money.
I was doing pretty good, I just hit my 90 day mark and am off probationary period. When I first started my job was when COVID first started hitting the states pretty hard so I got all nervous and worried myself into shingles. Then I did have a scare a couple weeks back when my asthma flared up and I had a cough so bad I went to er and got tested for covid. All turned out ok, l have to keep reminding myself that I am not in control here on earth. This past Thursday a coworker who sits in front of me left work early after they did our temperature scans because she wasn’t feeling well. Then Friday afternoon our job sends out a company email to us “a coworker has tested positive for covid” and basically consult with a doctor if we have any concerns. 🤨 I emailed my manager back like what that mean, can you confirm if homegirl in front of me had it so I know if I should get checked cause she was coughing and I have lupus and live at home with my dad who just finished chemo treatments as my 98 year old grandfather. My manager did not confirm the information for me but said if I had any concerns to speak to my doctor. Which I did, I called my jobs hotline and spoke to an on call provider and they were supposed to put in an order for me to get covid testing. My second covid test in a month period. I would say in prior years my anxiety would cause me to shut down. I would start over thinking, mostly of all the bad “what-ifs”, and I would retract and isolate myself. So I had to take a day to use my tools and bring my anxiety down a notch. I was getting headaches so bad I got nauseous. Not because I was sick, but because I was so worried. I had to remind myself that I will be ok, God got me. I have literally been in physically worse where my body has shut down on me. So if anything I hope you read this and know it’s ok to be worried. We’re living through a shit show in America right now so it’s understandable. What I hope you take away though is to use your tools to calm yourself down, what ever that might be. Mediation, exercises, hiking, get outdoors, binge watch a Netflix series, bubble bath…whatever it is you do. Take some time to decompress and let that shit out. Don’t have to let it go, but let it out. It’s not healthy to hold all that inside yourself.
I’m still gonna go get tested tho.
When asked about Lupus and you, how do your define yourself? Disabled, weak, incapable any words condemning you as less than normal? Or are you using words like survivor, warrior, fighter?
I spent most of my life after diagnosis trying so hard to be “normal” that I was not taking proper care of my body. I was still partying most nights, drinking heavily, not getting enough sleep, not seeing the proper doctors regularly. Which in turn would lead to constant flare ups to remind myself that I indeed was not intended for a normal life.
Then I became very critical of who I was based on my struggles in life and I began defining myself with terms like weak, disabled, sickly, anything that would make me seem like I had given up on my fight with Lupus. My mindset had determined that I was incapable to live my best life. As if I was not worthy of a normal life because I was sick and this is who I should be.
About a year and a half ago I began to change my thinking. I determined I was no longer going to be this sickly girl but I was a warrior, a lupus survivor. I was going to fight this disease and when I began to change my mind, it began to change my life. It wasn’t some drastic over night development neither so don’t see my words and think I snapped my fingers and instantly was a new person. It has become a process. A lot of trial and error with adjustments to my mental processes that include journaling, speaking about my mental health and lupus that have helped me transition from a weak sick patient to a strong Lupus warrior.
I’m no therapist. Not some worldly educated scholar but I know when I began to change how I perceive things, it benefitted me in the physical as well. I know I am a fighter so I have to fight to maintain my health, both mental and physical. Remove negative influences, replace it with things that uplift you. Emphasize your strengths, aim for your goals, and minimize your weaknesses to be the best version of you there is. Good luck and remember that it is an ongoing growth process. You don’t just wake up and become the butterfly. Trust the process.
I like to share information about lupus and my friends ask, how can I help raise awareness with you? So here’s are a few suggestions from the Lupus Foundation of America:
Share information about lupus on social media platforms.
Ask your local radio station to mention that it’s Lupus Awareness Month.
Print out posters about Lupus Awareness Month to put at your workplace, college, or school.
Host a fundraising event for a lupus charity.
Take part in an organized event for lupus awareness.
Donate money to a lupus organization.
Wear purple and then tell people why you’re wearing the color of lupus.
Become a source of information about living with the disease to your local newsroom and newspaper.
Write to Congress and urge them to increase funding for lupus research and support.
Participate in a clinical trial to help further research.
Become a lupus activist by communicating with your local politician about lupus.
Take part in a Walk to End Lupus Now event
It’s 4am and for some reason this is my time my body wakes me up every night. Whether I went to bed at 9am or 3am. It used to bug me this insomnia but then I began to take it as my “quiet time” where the kids weren’t up. Instead of starting my day with tv or social media, I took the time to begin my day with prayer. Sometimes it was simple “thank you God for the wake up” other days “Please God let me get this job” or just prayers for my kids, my loved ones, this current world situation. Just my time to speak to God and put my worries out to Him so that I’m not sitting here spinning out of control losing my mind over problems and situations that are out of my control.
So whatever it is that’s got you bothered this moment I encourage you to take a few moments out of your day to sit and talk with God. If you’re not really sure where to begin, start with a “Hey God, thank you.”
Bless up.
How do you break it down when people ask you “what is lupus?” I assume if I go into detail people get bored and tune out so I stick to the basics when explaining what lupus is: its an inflammatory disease where my immune system attacks its own tissue (my body); it’s a chronic condition with no cure. I like to mention that there is nothing basic about lupus though.
Each person I have every met with Lupus has been affected differently. So while you may know a friend who *appears to be functioning fine and living life normally on no medication, there can be a person of the same age who is suffering immensely because of it.
My own lupus journey has had its ups and downs. While I appear to be doing ok on the outside, ny journey has seen dark days. I have three kids who I do still go on walks with and play games with them, but there was a time I was in a wheelchair and my oldest had to help me do simple tasks like walk to the bathroom. I go Monday through Friday to a full time job but I went through a two year period where I was not physically or mentally able to work a job
I say all of this to say, if you are new to being diagnosed and you have only heard horror stories of lupus fear not! There are medications that can keep symptoms at bay and some people can live well with no medications. Some people are able to control their symptoms with diet changes and are content with that. I would also like to point out that Lupus is not to be misunderstood. If you need medication to sustain a normal life then that’s ok as well. I take pills daily that if I miss a dose I will be struggling and in extreme pain. So don’t judge ones Lupus journey based on another’s. We are all different. We are all living this Lupus one day at a time.
Lupus Awareness