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May 12

Fear, Denial, and SuperPowers – Lupus Awareness Month

I’m not COMPLETELY transparent about my chronicles with lupus and the minions (the other autoimmune disorders). I share a lot of my experiences, but not the deeply personal ones. It’s difficult explaining the magnitude of this physical and emotional roller coaster, even to the ones I love. It’s difficult to explain, because it’s difficult to understand. I try to be more open in my personal relationships, because there are days when I’m just…excuse the language, bat shit crazy. Between the medicine and the effects of the illnesses, I tend to be off my game at times. Like many lupus patients, I don’t try to live in constant fear or denial, it just comes with the territory. Some, take it with ease, but I will proudly say that I’m not one of them. The truth is, I DON’T know how we will feel day-to-day or even hour-to-hour. I live in constant fear, constant denial, constant superpower-ism.

FEAR
I am in constant fear that something will always happen with my health. One month I went to the doctor and the lupus was in remission, my steroid dosage was lowered, and I was on cloud nine! Whoo-hoo!! Three months later, I went to the doctor only to find that my immune system has been having a field day with my body AND it’s not the lupus. WTF?! Now I have ANOTHER new medicine and an increase in Prednisone. Welcome back moon face!

Many little things to a healthy person, are BIG things to someone with Lupus. Some ladies look at me crazy when I tell them that I can’t go get manicures and pedicures anymore. No, I’m not being a bit much. Do you know the dangers at those nail places? Do you know how even more dangerous it is for someone who is immunosuppressed? Girl, bye! You go on over to Lee’s Nails, I’m going to Walgreens to get my Kiss press-on nails. If you’ve EVER worn press on nails, you know the struggle. Just know that those constant reaches under the table or trips to the bathroom, could just be me replacing a missing nail. I’m at the point where I just don’t try to hide it anymore.

I have to go to the dentist four times a year, as opposed to two. When I do go, it’s a huge production, because I’m prone to infection. I am finally able to get the full dental work that I need, but guess what happened right before my appointments began? My immune system plummeted. (I went anyway, I want my pretty, natural smile back!)


smile

I don’t think the fear will ever leave, because I will never have an “It is what it is” attitude about my health or my conditions. I struggle every single day.

DENIAL
I want to go places and be treated normal. If one MORE person asks me if I can have something or if I can do something, I’m going to scream. I appreciate you for caring, but I’m going to scream. If one more person denies me the opportunity to do something by excluding me arbitrarily, I’m going to scream. PLEASE STOP IT!! Let ME tell you no, don’t decide for me. I know that I can’t enjoy life like I did before. I’ve numerous diagnosis and misdiagnosis andI saw the decline through the years, but I just wouldn’t accept it. I still haven’t fully accepted it.

I want to go to the beach and enjoy the sun, without having to hide from the sun. I want to play social sports again, I miss kickball and flag football. I want to run again, but I’m stuck doing yoga and tai chi. Well, I’m not doing yoga, but I should be. Everytime I start a walking regimen and get up to a decent milage, I take a decline. When the weather got cold, I stopped walking altogether, because one of the minions started acting up. Even through all of that, I believe that I’m okay. I’m not going to stop walking again, I’m going to start weight-training again, and I just might get up to running again. Oh, don’t tell me that your sister’s best-friend’s cousin has lupus and she runs marathons. We all are not the same. Trust me, I learned that the hard way.

flag football

Flag Football | Houston Social Sports Club 2012

SUPERPOWERS
Mind over matter right? Through my fear and denial, I still fight. I WANT a normal, happy life. I strive for a normal and happy life. My personality does not exude boring, bed-ridden, hum-drum, etc. I have to get it in, live life, have fun, go…go…go until my body says no, no, no! I honestly don’t know my physical limitations until they are front and center. The spoon method is not for me, because I think it’s too limiting. Besides, I’d run out of spoons, before 9am.  I’m just thankful that I can do anything all, because a lot of lupus patients can’t even get out of bed on most days. Since I don’t know how I’m going to feel, I just keep on keeping on and deal with it later. Is that the right attitude to have? Could be…could be not.
fight

5 comments

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  1. Julia

    My sister has SLE Lupus. She never knows what each day will be like either.

  2. KP

    Tonya, you are so funny! I’ve witnessed your nail action firsthand. Thank you for all you do for lupus awareness and in the community in general. Love and hugs, as you’d say!

  3. Carrie

    I don’t know a lot about Lupus but do know someone who was just recently diagnosed with it. My mom got really sick when I was in high school and while she didn’t have lupus she went through fairly close to what you mentioned. You never know what the day will hold so whenever she had good days she would push herself to the very max.

    I hope you continue to fight and do what you want when you can!

  4. Ana

    My friend is also having Lupus. But she keeps her spirit high and try to lead a normal life. I can suggest that don’t give up and defeat it with your enthusiasm!

  5. Roxy

    The mother of a girl I used to be very close to has lupus. I remember she used to get REALLY sick seemingly out of nowhere. While I’ve never discussed her illness with her daughter or her, as I read your post I really felt like I was reading her words. Despite it all she has been strong and continues to fight!

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