Miss Understood: Fall, Get Up, Move Forward, Repeat

Miss Understood: Fall, Get Up, Move Forward, Repeat

Summertime is my greatest fear and one of my least favorite seasons. Reason being, due to my lupus, I can no longer enjoy sun bathing. I am extremely sensitive to sunshine because of the affect it has on my body. I break out in rashes, become weak, and at times I’m so physically ill that I can’t get out for days at a time.

Living in southern California, the sun is impossible to avoid unless I stay indoors covered from head to toe.

Arlene and girlscropped1But, I have two very active daughters who absolutely love the sun and their favorite pastime is being at the beach. So I’m willing to sacrifice my well being for a single day in the sun with them. They’re too young to understand the magnitude of my decision, but I know it means the world to them to have me playing with them in the sand.

I’ve been criticized several times for doing so. People don’t understand why I would put myself in harms way purposefully. Is it because I want the attention when I fall ill? Or because I’m not as sick as I claim to be? Maybe I like being hospitalized?

As the saying goes, “You’re dammed if you do. You’re dammed if you don’t.”

My reasoning is simple. I love my kids and I want them to remember their mom in a positive way. Not as someone who was always locked up indoors, who couldn’t spend time with them doing what they love. If I’m going to leave this world as a “sick” individual I want to leave kicking and screaming, saying I had the time of my life and I refused to let my illness control me.

I’ve met so many amazing people throughout my journey, both survivors and fighters. Their stories are all different and they suffer a wide variety of diseases, but they always come back to one thing: they remained hopeful and didn’t allow anything to keep them from living their life to the fullest.

It’s far from easy. At times I’ve wanted to toss all my medications away and lay down defeated. But those moments pass, I pick myself up and I remind myself that no one is going to fight my battle for me. I can either let it get the best of me and get lost, or I can do what my parents taught me and keep moving forward.

This is the route I’ve decided to take. It may not be everyone’s first choice and it may not be the right one, but it’s my decision.

I had no say when my body decided it was going to start shutting down and inflict pain upon me day in and day out. But this I can control. I will continue to move forward and when I leave this world it will be with a smile on my face.

Arlene Grau

Arlene Grau

Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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In the long run, the bottom line is, you’re the one who has to live with your decisions. It’s nice that people will so willingly offer their advice but mostly, they just like to hear themselves talk. You know yourself, your disease, your life. Your kids will have to live with your decisions. We can only try our best and hope it turns out OK. My kids grew up in the same situation as yours, something I hope they someday get a group together, a group of “kids who grew up with a parent in pain.” My girls, now in their mid to late twenties are fine. I did the same thing you’re doing…”What I can, When I can, and as much as I can.” I pushed myself to bring them to the park and to the playgrounds or just to hold a Saturday morning TV Fest, as long as it was non-damaging pain. It was gonna hurt anyways, might as well make some memories and give the kids a foundation of playing. It hurt, but it was good for me, and for them too. I’m glad i did, and for the same reason I’ve been thinking about lately…that the pain we feel is all relative to our knowledge of how bad it can be. If I were to have my kids nowadays, it would be impossible for me to do things with them, except visit, which we do often. No walking or driving or going to the park. 15 years ago the pain was undiagnosed and it was very difficult to do physical things without stirring up the pot. I was learning about my pain and its limits. The disease was causing my body to deteriorate but I was so “hyper-tuned” to the scary future and sensitive to the present pain it consumed me. Who would have known that years later I would be unable to do things. (I should have known, but denial’s a different topic.) That’s why I’m so glad I opted for doing the non-damaging, painful things and that I have the memories of making sandcastles with the kids. I wish I could go back to those days, knowing the pain I know now. I would have done so much more. After the kids were grown and gone and I was finally diagnosed, I was able to better understand what was damaging pain and what was non-damaging. It was too late by then to be with my daughters, but not too late to express my elation in knowing I had some time left to be physical and I took advantage of that knowledge, as much as I could anyways. So I say to all of you “Parents in Pain,” learn your pain. Study, talk to your doctors and therapists and find out what you can get away with physically. Find out the prognosis and Do what you can, as much as you can, but non damaging only. Above all, make memories and relationships. Years later, when… Read more »