Sure, you know I am sick and not well because I either tell you or you hear it from someone. You can look at me without knowing me and say ” She is not sick”. I can get dressed up and show up to a function with a smile on my face and hide all my pain from you. I can push myself beyond boundaries that amaze my doctors. I can take this ugly disease that is called lupus and make it look wonderful. I am one of the many faces of lupus.
When I am battling so much pain in a day and I look at myself in the mirror, I just want to scream and say ” lupus you coward, show yourself”. “Lupus, you are always hiding behind me, step up so everyone can see how ugly you really are”. How I just wish I can show everyone the scars lupus has caused me on the inside and out. If people could just see all the damage that lupus can do, maybe just maybe they would understand what life is like living with lupus. I am one of the many faces of lupus.
I have met many doctors throughout the years. Sometimes I wonder what their vision of me is while they are reading my chart. They see the words cancer survivor, stroke survivor, fibromyalgia, raynauds syndrome, syncope, arthritis in the spine, blood clotting, heart surgeries, pacemaker, baclofen pump, tendons stretched, and lupus. They must expect a disfigured, unhappy, wheelchair bound female because at times when they enter the room they ask where the patient is at. When I answer that it is me they look a bit stunned. I am one of the many faces of lupus.
Lupus is not about gender, age or race. Lupus doesn’t care how much money you have or don’t have. Lupus doesn’t care about your career or social life. Lupus only cares about lupus. This coward disease will try to take over our life’s, but we must not allow lupus to do this. Together we must stand strong and show lupus that we are not going down without a fight. For I am one of the many faces of lupus.
I feel as though my life has converted backwards. Not in the sense of getting younger ( boy that would be nice). But in the sense where I once felt I was having some really good months and lately I can not even get a whole good day. Not that long ago, the pain seemed so much easier and now just to ” fake it till I make it” seems so unrealistic. I tolerate the pain in the day pretty well even though I fight back the tears a lot. The nights are the most painful of all.
The night terrors of pain is the most breath taking , air gasping, and life fighting nights that I have been battling with. When my head hits the pillow the other parts of my body is looking for away to beat up every inch of my body. My ankles feel like they have been hit with a hammer, my legs are so weak from the forces of the spadicity, my hands feel like they are on fire and also feel like the bones are crushed. My pump constantly feels like it is tearing its way out of my stomach and spine. I get these bolts of pain that goes through my entire body at the same time that feels like I was hit by lightning.
These lightning bolt feelings throughout my body are random. But imagine yourself standing in the kitchen and out of nowhere you get this all over shock of pain from the inside out all at once. It happens so fast and has touched every nerve in your body at once, that you don’t know how to react or respond other then saying “Oh not again” . Or have this happen to you while you are in a deep sleep. You jump up out of bed so fast because you actually think there must be a war going on inside your body. You can actually picture the battle inside your body. There would be missiles attacking trigger spots inside you. Machine guns going off aiming at all your nerves. And off in the corner a sharp shooter targeting all your organs. You would love to send something in to help destroy and win your war, but as we know there is nothing or nobody strong enough to do this. I am not ready to wave the white flag showing that I been defeated, but I do have the flag at my fingertips.
My heart is crying more then usual. For my heart has been through so much. Not only with the everyday life trials but also with the never ending battles with lupus. I am in a desperate place right now. I lift my hands up and scream inside that enough is enough.
I tell myself that I can handle this chronic disease because I can push through the pain at night as long as I have relieve and joy in the morning. I also know that I have so many people on the other side waiting for me.
There is no mystery to this disease. We know there is no cure and that we all who suffer from lupus will live in pain everyday with minimal relieve. A mystery disease? No, it’s just a shameful disease that its untreatable.
I still wait for someone or thing to rescue me and set me free from all this pain. I have depended on these doctors with endless results. Yet, I find myself spending endless amounts of my days sitting in waiting rooms waiting to hear the magic words that doesn’t exist ” You No Longer Have Lupus ”
Today I am trying to keep my eyes open as I struggle to see the beauty around me. I am amazed by how much lupus has tried to darken my days and has sent me terrors at night. How can every moment seem so hard right now? I am so broken and wonder if I will be fixed.
I am trying to do all the right things, so why am I struggling? I will do what I have to do as long as I have something to hold on to. But, one can only handle so much pain. We all have wounds that need mending but how do you mend them when there is no cure?
There are all types of lupus. Not one of us with lupus have all of the same triggers or flares. Sure, we might have similarities but not all the same episodes, treatments or surgeries. Have you ever thought or been told that you need to deal with “IT” at some point, get over it, or ignore it. Really? Is that easy to just walk away from something that makes you sick? Have you ever walked up to someone with cancer and said just cope with your illness? Or how about someone with a peanut allergy and said, just eat the peanut and deal with the side effects. Do you throw people in front of a moving car knowing they will get hit? At what point in life can I decide when to not have Lupus?
I have thought about all the things I have missed out on these last few years because of lupus. Birthday parties, family get togethers, friends just having a party to party. It breaks my heart to not be able to attend things as I see people in my life missing out, or me having them go without me. I try to make it out to any event outside or inside if I am allowed. But knowing I have lupus and knowing that pet dander triggers a flare, I try to avoid this as much as possible. Not because I want to but because I have to. I would love to wake up and do whatever I wanted without thinking about the consequences.
I have suffered many consequences for not listening to my body. It is typically for other people’s pleasure not my own. I don’t usually walk in a line of fire if I don’t need to, but for some reason other people want me to. Is it because they just don’t think? Or is it because they are just ignorant about flares? Or is it because they just are putting their own desires first? Which ever it may be,I did not ask for this illness nor did I ask for this life.
I have pictured my life doing all the things I loved. Hiking, biking ( bicycle), tennis, fishing, camping, long walks anywhere, until I couldn’t do it anymore. Little did I know that I would have problems doing the littlest things in life, nor did I know I would lose close friends and family along the way. Sometimes, when I dream I see myself surrounded by all the people I care about doing all the things I enjoy. But, then I see them climbing up a mountain bigger then Mount Everest, or biking the Tour De France, or camping in Alaska ( which I can’t do because of the cold) or fishing on a lake ( which I am just scared to do because I can’t swim). I can vision them all carrying on with their life’s leaving me behind.
There is not a day that goes by that I wish I wasn’t sick. There is not a day that goes by that I hope I didn’t complain to much or hold my loved ones back from something they want to do. And there is not a day that goes by that I still want and desire to do the things that I enjoy. I just have learned to understand that it may take me longer or I may have to learn to do them a different way or find someone different to do things with. But one thing for sure is I CAN’T JUST DEAL WITH THINGS THAT CAUSE ME TO FLARE AT ANY POINT!
Describing myself to someone I just meet is simple. My name is Renai and I am a warrior. There is a burning inside my soul that is hard to define. I battle with what’s right and wrong at times. I battle with urges to give up. And I battle with the battles within myself. This all sounds complex at times because at times, it is.
When I am battling with what’s right and wrong I am not talking about evil or bad thoughts. I am referring to my personal health. Is it right for me to push myself when I know I shouldn’t. Is it okay to choose not to take a certain medicine because I fear the side effects, although it might help me. Do I live more for the instant gratification more then the long term gratification, because I am terrified I may not be here for the long term. Do I sometimes put others before me so I can see others happiness first. These battles I deal with may be enough to just sometimes want to give up.
Giving up is typically not part of my vocabulary. I have pushed myself more then anyone has in my life. Sure, I hear the occasional ” Don’t give up” phrase, but that is just a generic respond we as humans say. I have found myself saying it a few times and wished I could turn back the clock. How do you tell someone not to give up when you don’t know the pain they are dealing with. When is it okay to say ” enough is enough”. Each one of us has to decide what we are fighting for and how much we can carry alone. Yes, yes, I know there might be people in our lives who want to help carry our burdens, but they can’t carry our pain. This starts all the battles that I battle with each and every day.
I wake up each morning looking around at my surrounding to make sure I am still here on earth. Then I try to determine what my pain level is. Is it one of those days that I will be low-key and just sit at home. Is it a day will I can get up and enjoy my day with minimal pain, or is it a day that I will push myself to no end because I feel that my end is near. I try to wear the same face each and everyday so nobody can see what day I am having. I guess you can say I wake up and put my war paint on. God knows I have the battle scars I carry on me from all the surgeries I have gone through. But, what nobody sees is the scars I carry inside from the day to day battles I live with.
So, if you meet me on the streets one day don’t be surprised when I introduce myself to you as “Renai The Warrior”.
Often, I am questioned by my so called closed friends and family. All wondering when I will stop posting information about Lupus on blogging, facebooking, tweeting, google+, and every other social media out here. My respond to that question is ” I will stop when I am physically unable to do so, or I am no longer alive”. See, I have the right to post and write whatever I want, as long as it is not harming anyone or vulgar. Everyone else, has the right to block me or delete me as a friend.
Can you actually call yourself a friend or family if you get annoyed with my post regarding my illness? Can you simply decide when its okay for us to be friends and family? Is it when I am healthy? Well, that day may never come. Or you or someone you know might get ill and you them find yourself posting things about fundraisers, cures, hopes and pain. Would you then want your family and friends to turn their backs on you? How would that make you feel?
I am mostly an upbeat person. I deal with things head on. Sometimes new information regarding a blood test or test result may take my breath away for a moment or two. But, I put myself together and find a way to deal with it. Sharing my lupus journey is just one of my ways of dealing with this chronic illness. If I can reach out to one person and help them understand lupus a little better, then I feel this life is worth the pain.
Weakness is also part of my life. I sometimes feel like I am being dragged around physically and emotionally. Lupus is very exhausting disease to explain and especially to have to live with. So, as I have said in the past, you may not want to hear about my life with lupus,but I I would rather not have to have lupus.
We all have choices in life to a certain degree. You can decide my information is just not uplifting enough for you and you can walk out of my life. Or, you can be patient and follow my journey and maybe actually learn something’s. For you never know, someday, someone in your life maybe diagnosed with a chronic illness. What would you do then?
I wanted to write this while i am going through a flare. I wanted people to know how things can change literately in seconds. From one moment, you are smiling with the sun shining on your face and the wind blowing in your hair. To the next second, feeling as though you been dragged behind a car and ran over a thousand times over. How can I ask you to understand this unless you feel it? How can I expect you to be able to deal with something I have a hard time dealing with? I lay down to give my body rest only to realize it feels like I am laying in a bed of nails.
I have pictured myself as a Classic 57 Chevy Pickup (a vehicle I have always wanted to own in Candy Apple Red). Made strong to hold the heaviest of loads, yet gentle enough to cargo the most delicate items. Like all things though, without the proper care and maintenance, rust begins to show and the old classics just become scrap. It has become to easy nowadays to just throw away the vintage instead of preserving the most liable things in life.
My shoulders have bared more weight then an old barn house can hold hay. I have stood straight and tall carrying myself and others for many years. And just like that Classic 57 Chevy Pickup ‘s V8 engine I have enough torque to keep on going and going. In the beginning, I was keeping up with all the maintenance, to keep this classic going. But, after some time it just got to be to expensive and time consuming. I also feel that at first, others would wipe their feet before stepping in and now they are just trampling their muddy feet all over this Classic 57 Chevy Pickup.
Just like the Classic 57 Chevy Pickup I have safety locks. Unfortunately, with all the wear and tear these safety locks don’t always work. I have been broke into and have had many things stripped away. Even if I invested in an expensive car alarm there will always be someone who knows how to hijack. I have to figure out what other measures I am wiling to take to protect this classic.
Vintage to me is not only classic but enduring style, perceived quality and rare. This is why I need to preserve this Classic 57 Chevy Pickup. While others are willing to just junk this classic that has chauffeured them to and from all locations, I believe I am worth restoring. I will not allow any more muddy shoes on me. I will not allow to be looked at as just a form of transportation. I am not just an object to be used, abused and thrown away. I am a classic and if you can’t appreciate vintage, I don’t need you.
Change can bring so much positive or negativeness in our life’s. In so many ways I feel I have changed after being diagnosed with lupus. I can say that I have lost myself along the way. Battles that I was willing to fight for, I now just turn away from. Part of me feels stronger, yet weaker at the same time. I realized I can deal with pain in such a way, that unless you have this disease you would never understand. This change is changing me.
Each day I feel I am being robbed. I know this swindler is just lurking inside of me waiting to take another piece of me. But how can I fight this alone? How can I fight something living inside of me that is actually part of me?
I look in the mirror and wonder who is looking back at me. The reflection of someone I don’t recognize. I see pain over shadowed by a smile and caring eyes. I hear a soft inviting voice,whispering words of anguish. I dress up the outside to keep the ugliness of this torment on the inside.
Transformation is one of those things that I can count on but I know it’s how I deal with it that matters. Not everyday can I be a super hero, nor can I dress up and hide all the pain. I may no longer worry about fighting every battle but I try to focus on winning the war for my life.
Take me away. Away from all the worries I have on my mind. Away from the pain that fills my body. Away from hurt that weighs down in my heart. I wonder what it would feel like if someone could take all these things away. For just one day, I would love to be taken away.
The worries I carry around with me on a daily base is more then one can bare. I worry about the well being of all those I know and have not met. I worry about the worries of others. I worry about not worrying enough or maybe to much. I worry about what people think or don’t think. For just one day, I would love to be taken away.
The pain that fills my body is unexplainable. My body lives in a torture chamber 24/7. I smile with you and for you, so you don’t have to share my pain. I cry on the inside, so you don’t see me as weak. I carry you, so you don’t have to carry me. For just one day, I would love to be taken away.
My heart is so heavy I feel it’s being stepped on everyday. I am a forgiver, and a helper, also know
as a sucker and enabler. The more I do, the more I get hurt. My heart wants to fix the world and everyone in it, even when they clearly don’t want it. For just one day, I would love to be taken away.
If just for one day, all my worries, pain and heavy heart would be taken away,I would…
I guess I don’t know what I would do because I can’t see this day ever coming.