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.
I do find myself going into dark places every so often. It’s easier to do now then before. Before this illness became such a full time job. I catch myself just staring off as I didn’t exist. Wondering how life’s would be different if I never entered into this world. Imaging the painless days or nights people would have if we never crossed paths. It is so dark, in the dark. Have you ever had a dream where you were falling and you couldn’t wake yourself up? Can you imagine feeling that way while you were awake? You reach your hand out for someone to grab you and pull you out, but you are reaching in the dark. It’s as if nobody sees you, even though you know someone is there. It is so dark, in the dark. How many times have we walked the same path in your house and we memorized where everything is at? Can you imagine walking that same exact path, but this this time walking into walls that have appeared out of nowhere? You reach to turn on a light but it remains dark. It is so dark, in the dark. Being in the dark is such a dark, lonely place.
Weak and vulnerable are not words in my vocabulary. At least, I would like to think they are not. I am the kind of take charge person. You know the type, sh.. or get off the pot. If you want something done right, do it yourself. Fight for what you believe in no matter how may people you piss off. Anyways, I can go on and on, but the point I am trying to make is, sometimes I have a breaking point. Hard to believe, yet so true. You know, when this happens I ask myself, who will walk with me?
I wanted to explain to my family and friends what lupus is. Of course, I will let you know how the doctors explained it to me and I will also give you the dummies version ( my version ). There are people out here who claim to know how this illness works, when in reality they really don’t. There are even people out here who claim to be supportive of us, who really aren’t. If you haven’t read any of my blogs yet, I ask you to at least read this one.
Lupus, is a chronic autoimmune disorder. The immune system is designed to attack foreign substances in our body. If you have lupus, your immune system attacks healthy cells and tissue. Having lupus can damage several parts of our body, such as; joints, skin, kidneys, heart, lungs, blood vessels, and brain. There are also many symptoms of lupus which are; painful swelling joints, muscle pain, fever,rashes, chest pain, hair loss, purple fingers or toes, swelling in legs, mouth ulcers,swollen glands, fatigue, headaches, dizzy spells, confusion, and seizures. When having these symptoms they are called flares. This was the doctors version of lupus to me, but living with lupus for nine years now, I have my lupus for dummies version.
Lupus is a very painful disease that has no cure. Living with lupus takes a lot out of you physically and emotionally. At any given moment you can be dealing with no pain to extreme pain. The heat is as bad for us as the cold is. If you have lupus you know what the term ” fog” means. To those who don’t know, it’s means confusion. Fog is very scary at times, we forget what we are doing, where we are going, where we are at, even if we been at that location several times before. These fog moments can last a few seconds to many minutes. We also have flares, which can be mild to severe. Flares are pain spells which can attach any part of our body, at any time and can last for hours to days. I can compare a flare for those who don’t know, its like having the flu really bad where your body is sore to the touch. Your chest hurts as if you were up coughing all night. Sometimes your bones hurt as if you sprained or fractured one of them. You get headaches which turn into migraines from the glare of the light outside, lighting at stores, homes or at work. Foods we were once able to eat now we can not. Activities that were once easy are now very difficult to do. Our calendars, which once was filled with family activities is now filled with doctor appointments. Lupus is a chronic ( long time) autoimmune disease that has no cure.
Having a chronic illness can put many strains on relationships with family and friends. We may all, who live with lupus have experience losing friends and family over this. We may have had someone close to us say something hurtful to us because of our lupus. I know I have loss several people in my life because of lupus. Someone told me not to die because they been to several funerals already. Really? I was also asked if I was ” using that card ” meaning using the lupus disease for help. I know that hurt me so much that day as it does today when I think about it. If I can’t mention needing help every now and then, or not being able to do something because of my lupus with people who claim to love me, then I guess I am suppose to walk around like superwoman with no pain. I understand its a tricky situation for me, I want to be treated as though I can do anything and everything, but I want the people around me to see when I need the help and take charge.
If you know someone with Lupus try to be compassionate and understanding. Do not take it personal if plans are made and broken at the last minute. Educate yourself with any information that’s available on line or ask me and I can have the Lupus Foundation send you some. But, if you want to know what lupus is really like to live with, ask someone who deals with it everyday. Lupus for dummies, is for anyone who wants to understand lupus.
I love a challenge. Maybe because I refuse to give up, or maybe because I am a Faille. In the back of my mind, I think there is nothing that I can not do. Sometimes, I realize maybe just maybe I bit off more then I can chew. That doesn’t stop me though, I push through whatever it may be and finish what I started. Stupid at times yes, but I couldn’t see it any other way. Life is not meant to be easy, but it should be fun.
While visiting family, we all went on a little hike ( when I say little, it was a six mile hike ) regardless to me it was just a number. Now I knew what I had in store for me because we adventured out a few days prior and walked about two of the six miles. Now the trail wasn’t all pleasant and flat ground, it had pebbles, rocks, tree limbs, steps, small streams, bridges, big inclines, and a street to cross. But, like the trooper that I am, I continued walking focusing on my breathing, and my next step.
With each step that I took, I remembered the long journey it took to get to where I am today. I reminded myself how lucky I am to be able to experience this hike. I thought about all I have to live for and all the new adventures waiting for me. From day to day, I am uncertain on what my ability will be, so I need to take advantage of what I am able to do. Is it painful at times? Yes, without a doubt. Do I ever say, I should not have done that? Sometimes. But, where would that get me? Another day in bed, a day staring out the window wishing I was outside. I believe one day I will not have a choice but to stay in bed, so why not do what I can when I can.
On our hike back to the car, around two miles out, I managed to twist my ankle. Painful yes, without a doubt. Besides, slowing down my pace ( okay and everyone else’s ) and moaning anytime I had to bare weight down, I had no other choice but to finish this hike. After all, there were no sled dogs to pull me out, nor were there any Ancient Egyptian Servants to carry me out. So, yes after which seemed like forever I made it back to the car.
At the start of my day, I knew that I may have some barriers to go over, but I faced then head on. Even knowing that there might be pain involved I still looked at this hike as a blessing. Not only was I able to spend time with family, I was able to walk on my own, breath in the fresh air, and enjoy the beautiful world all around me. So, when you are faced with a day that may be a little challenging and you know you may have to deal with some pain the following day, ask yourself if the hike is worth it.
It’s so hard to believe that it has been months since my last entry. I had a couple surgeries and I have accomplished some personal goals. There has been a few set backs and challenges a long the way. Some new people have entered my life and some relationships have grown stronger and some weaker.I have witnessed,losses and sorrow, life and hope,
This baclofen pump has made it possible for me to move around and walk. It has also put me in the hospital and had me in bed for days at a time. I can see how this pump has given new opportunities to appreciate the simple things in life, such as; walking, climbing stairs; biking, and of course wearing heels. With all good things though there are bad, if I twist my torso, lift something heavy, reach to high or low, my pump will flip and cause an overwhelming amount of pain. I must decide if I will continue to live my life this way or have the pump removed and resort to the possibility of life in a wheelchair. Not an easy decision when you are faced with it. Regardless of what I decide, I will not give up spreading Lupus Awareness.
Last year, I put together a group to walk in my towns Independence Parade. There were about twenty of us that walk with lupus banners and signs. We passed out information on lupus and handed out candy. After getting so much positive feedback, I knew I wanted to do more. So, this year, our walkers doubled in size and the support from the town was greater than I could ever expect. With all that going, the first Lupus Walk in Bartlett was all coming together. Since I was asked if it I wanted to organize this event, I felt the pressure to put my all into this. I am so pleased to say this event went wonderful. The walk raised over $25,000 which is just incredible for a first walk, at least to me it is. But, I know there is so much more that needs to be done.
Each day, I look at my updates on Facebook and twitter and I see how many people with lupus are suffering. Whether its with the fatigue or pain, it’s with medications and insurance companies. If all that was enough, it’s not. Lupus changes each of our lives within seconds. One moment we feel good and the next we are in bed with a flare. Those we thought understood our illness our now questioning it. What was once an easy task has become a tiring painful one. We then, read other peoples battles and find some hope, while others lose their lives. Some days I am not sure if being on line is helpful or hurtful.
My life is always changing everyday. Today, I have hope and the desire to keep fighting, for me, my family and for a cure.
It has been way to long since I have blogged. Even though I have had some down time visiting my son out of town, I feel like I have not slowed down. For some reason I feel like I do better when I push myself and when I am trying to reach a goal. My body is aching now as I write. My fingers are burning, my eyes are heavy from the pain, my joints are tight, my head is pounding lightly, but I continue to push through it all for you. For you,who can’t but wish you could, for you,who thought about it, but didn’t get a chance to, for you who dreamt it, but couldn’t imagine it, for you who are out there reading this thinking,I wonder if I could.
I tend to think big and want to run without walking. I get a thought in my head and want to speed right to the end. I envision on how I can change things and make things better for everyone. I don’t want anyone to feel alone, or hurt, or helpless, or scared. But, at the same time, I try to push people to be their best and to do the best. I may come off heartless at times, impatient and overbearing, but, all for good reason. I see the best in everyone and know we all have good in us. Not one of us is without fought. My blogs are not perfect, but I write these not only for me, but I do this for you.
I have seen people close to me struggle and fall. I have heard many worries and cries from family and friends. I have experienced my own let downs, failures, and disappointments. I have not only witnessed other people wanting to give up, I have also wanted to stop fighting. This life can be a total play ground one minute and in seconds turn into a battle field. I wake most morning happy to be alive and willing. Willing to fight for my life, willing to fight for my family, willing to fight for my friends, and willing to fight for you.
My body is weak and my mind is tired, but today I can push myself more then yesterday. I am able to find a bit more energy when I see and notice change. A friendly gesture, comment, smile, and touch, can make the pain and exhaustion more tolerable. Helping someone out with a simple phone call, text or card, can make my own troubles subside. I may seem weak to you at times, but I am a fighter, not only for me but for you.
My days may be long, they may be painful, but I will continue to play in the playground and be prepared for any battle ground. I may take on more then I should, but I will put 100% in everything I can. Whether it is doing a stair climb, starting a walk, or being a friend. I will fight when you can’t, I will walk, run, and talk for you. We need not to be afraid to push ourselves when we think we can’t for those who truly can’t. I will continue to do this not only for me, but for you.