A fragile, aging, petite woman just came to check on me and left my couch with a slight smile and “the look”. She is the most powerful person I know. She does not have social status or great wealth but she has a heart that you do not want to disappoint. I love to have the company but only for a short time. I am an addict. It hurts to be around people and to pretend to be someone I am not. I have battled drugs for many years. I have also been sober for many years. What I want to talk about today is my relapse into prescription medication. The tonic transfusion that has taken over my body was actually a concoction by my rheumatologist who eventually sent me to a pain doctor. This is where life became jumbled. My entire spirit and individuality changed. I was very satisfied at first but then I needed more medication to maintain my pain-free status. I started to take more pills and began to run out before my prescription was ready. Every month there would be some sort of withdrawal which is rigorous and cruel. I have Lupus so some of the symptoms overlap and you feel like you are having a flare every month. I sit here like a sad little girl with no direction. I am so powerless and angry. The drugs push me down deeper and deeper and I can see no way out. I abruptly have to climb out of this madness.
How do we escape bondage and begin to move toward freedom in those sinful areas of our life? Well, I don’t know. You can read books, seminars or even listen to the doctors. I am here to tell you only you can do it. So many things in this life overshadow our godly hearts and minds but he is the only one who can take this pain away. I still need some of the drugs and I fight everyday to stay strong. But honestly I do not do a good job at it. Living with a drug problem and a chronic illness I have to choose to take only the minimum amount of drugs to keep my disease in place. If you are going through this, I wish you could fight with me. We all need to hear someone’s story.
We are but dust-born into a physical body that has already “fallen” and prone to cause problems for the soul.(PS.103:14).
It has been a while since I have discussed the brutal impact Lupus has habitually interfered with during my life. Today has been a total breakdown and I stayed in bed for most of it. Why the sadness infringes on my plans, I don’t know. My last infection, about 3 weeks ago left me with 2 weeks of antibiotics. I thought I was in the clear but redness hit my face and neck like supersonic colors. Of course I got my fever blister and only a little sore in my mouth but nothing like usual. My legs and ankles have become so inflated at times I can barely walk. I do have my special shoes but they are so decrepid I can’t even go to the mailbox in them. So embarrassing but I love them! My main concern now is my lungs. I am very short of breath and my inhaler just is not cutting it.
I am sorry for anyone going through any chronic illness. People will never know the sadness that everyday brings. Some days are so unbearable I can’t even put it into words. The people in our life have to continue their routine obligations so the sadness and guilt become overwhelming. You hurt so bad that your focus on God can quickly disappear and allow the enemy to move right in. I get fearful at times when I am alone. I worry about the future and I can quickly feel my mood change. I fear that I do not love this person that I see. I feel shame for some of the failures in my life. But God sees a desire to love us through our shame and guilt. But, I feel guilt and shame for not always remembering that. Hang tight you tenacious strong survivors. I love you all.
Lupus or any chronic illness can bring about an array of emotions that can occur in any order and lasts until God gives you the courage to move on to the next phase. He knows when we focus on his work in our life , we’ll discover our spirit and courage to react to the life-altering event we have been assigned to.
1. Denial-Don’t give into fear, but break its hold through scripture. Our willingness to obey is a key to answered prayer. Instead of denial, if we demonstrate thankfulness in harsh circumstances, other people may see our response. The people in our life will want the peace they see within us for themselves.
2. Anger-This can ruin relationships and make it difficult for a person to move forward in life. It is a painful storm of resentment that will always block our path to righteousness. This is a hard one but, rejoice in the fact today that God is giving ou this opportunity to give him glory.
3. Bargaining-This is a negotiation for extended time. We must realize the first rule of warfare is to know one’s enemy. Through God we can conquer Satan and win our unseen battles. The combined forces of hell cannot equal the supernatural forces of a single believer. To me, bargaining tries to defy logic. We just need to believe and praise the Lord.
4. Depression This is an unbelievable force that can be the toughest stage to go through. I seem to keep coming back to this process over and over. We are to fix our gaze on the Saviour, and let his joy become yours. With so much out of our control , it is such a relief that we are called to get our joy from the Lord. Depression can become a major stumbling block. Do not give in to fear but live in confidence. Lean on your relationships but process your feelings and brace yourself for God’s grace.
5. Acceptance-Humble yourself. People who pass through these stages can enter a single one for a long period of time. God has a purpose in mind for each experience whether pleasant or difficult. This is the time to trust God, grow in your love, and never forget how Jesus embraces us. We are his masterpiece and no matter how fragile our bodies get we are perfect because God designed something different for us. Our relationship with him will take us to a place where we can finally say we are done with this fight. I am unique and my purpose has been faultless.
Well I want to talk today about a pillow epilogue. We all privately talk about it in our quiet haven but it usually does not become a source of theatrical agony. We had a friend staying with us for a few nights. He took one of the boys rooms and so a jolt of anguish immediately overtook my emotional emphatic child who was forced to share a room with his brother. You see we also took one of his pillows. The one he puts in between his legs. We have couch pillows and pillow pets but they were not his traditional pillow. We needed to use his for our guests. We went through a complete meltdown before I finally left the room completely exhausted and sick at heart. About 30 minutes later I went in to check on him and he was sitting in the same position with the same somber look. I sat with him and found out the main reason for the meltdown was he gets bruises on his knees if he doesn’t have a pillow. How do I explain to a child who sees life through his own needs and desires that there are other simple ways to fix a pickle? At !0:00 at night there isn’t. We laid his head down and he finally closed his eyes.
But, where do those emotions go? He did not get to let them out. How can he continue to live inside of his own head and not feel overwhelmed. I want to know what to do about it when we do talk. How can we describe our feelings and have a release of despondency? How does he feel about my Lupus and watching me change day after day? I am not okay with just explaining my symptoms and living this life. He is described as having a mental illness. No matter how you try to get around it, you can’t. Even your family cannot be truly honest with you having astigmatism like that. When he is mad it is not always because he is erratic. It is a real emotion focused on his judgement. How can we help? We could possibly slant our point of view and become nonpartisan to the simple pillow problems. He got through the night now I just need him to get through the emotions.
I hate the misology of victim. But, I am a casualty of my mind. My mind does not fully flower and bloom at the sight of happiness. I sit in my gutter and look up at you with excitement at every word you promise. But your promises are fake. They push me down deeper and deeper and i can see no way out. Where did I go? I want so much to be powerful again. I want to love and feel life again. I hear your promises and I know now they are not true. You are laughing at me but in your own sincere way, I want to climb out of this madness but I can’t. What is there to fight for anymore? I feel powerless while everyone around me looks so impressive. I am stuck in this cold wet abyss. Can anybody see me? What is going to happen to me? My voices yell at me, but I count on them so much. I hate them. What is the truth? Why can’t anyone tell me it is going to be alright. Would I believe them?
I am crying out in pain. Why is nobody listening? Why is nobody helping me. I don’t want to be like this but I have isolated myself. I have no true connection with anyone. When my family reaches out for me they are fearful. They act as if I am going to fall apart. Have they seen this in me to many times before? Have I scared them so much with my outbursts that I am a stranger to them? I need them so bad but they have seen this so much. It gets worse the longer it goes on. They love me but I am so angry that they cannot see my pain. Why can’t they feel what I feel? Why are they not like this? I am now changing. I can feel it. My emotions get raw and go somewhere. They hide deep in my head and now I am numb again. My anger turns to rage and my voices are mocking me. Do they want to hurt me or do they just hate me? I push them way back and pull my pleasant disguise forward until the pressure of the pain bursts wide open again.
Lupus and drugs can bring devastating results. Please feel free to contact me or get help if you are experiencing any symptoms of depression.
Lupus is one of the most cryptic, mystifying diseases on the planet. As a wife and mother I get up every morning to car pools and breakfast and plan my day around doing cloths and arranging dinner. The rest of the day, the part nobody sees, is sweatpants, naps and Netflix. The hardest part of lupus to me is having to explain to someone what it is. Lupus is so different for so many people. But as most of us know, I don’t look sick on the outside but my body is at war on the inside.
I remember as a child the severe leg cramps. I remember getting burnt too many times at the beach and winding up with blisters on my lips. I remember the mouth sores and being so tired some days that I could sleep forever! But I was a teenager. I lived in Florida. I was a swimmer, cheerleader, lifeguard, well and just plain busy. I had a convertible and I loathed in the sun for that perfect tan so I never protected my face. The one thing I did not think about was the photosensitivity to my eyes. We did not have computers when I was a teen but now if I write to long my fore flare begins.
My ten-year old has started to produce the same symptoms I had as a little girl. He has leg cramps and if he goes outside for any length of time his face flares so bad it looks like a second degree sunburn. unfortunately for him the number one cause of his fore flare is his gaming systems. If he plays to long he pops up with a nasty butterfly rash. A friend told me about Gunnar glasses from amazon.com. They will protect him from computer vision syndrome and cut back on the ugliness of the disease. I have not tried these yet but, I am very interested to see if they work.
Maybe that is why Lupus is so relentless. The outside wonders of the world, the vitamin D & C which claim to help depression and give you the boost you need are the very things that make me so sick. The entire atmosphere can bombard my body. So if you see that nice tan glow that makes us look healthy just remember it makes us feel horrendous and scared that at any minute we could feel the wrath of the warm, glowing sun.
Feel Good Together (Photo credit: Wikipedia)
I want to say in advance that this is part of a painful glimpse into an always changing chaotic view of myself. Many know I have Lupus. And, I know there are many diseases out there that people are living with. Have you ever wondered how they feel? (mentally). What are you supposed to feel?
I am at a place that is empty. I have stopped feeling any emotion. I struggle through the day, Then, I get it back together before the kids come home from school. Now, as I recover, I know this place is the worst place I could be. Can you be that numb? I think so. So, when a person is in that state how can you help? Do you quietly think I am glad it’s not me or say you know you will get through this it just takes time.
I usually am an isolated person. I don’t like to talk on the phone or sit with people but, I have a overwhelming urge to help others. I have endured many different troubling life events. I think this is where I became reserved. Writing this post helps me share my feelings easier than if I were talking to someone about “how I feel”. I want to share this with you because people who are hurting might not know how to voice this. Professional help is a wonderful outlet that helps many people. But, this goes out to those who just can’t quite put your finger on what is wrong.
Even as I feel numb and depressed I know God is with me. It seems hard to accept but he is there. When you get to your dark place of your life please take a moment to pray. (or write to me!) I can’t tell you what your miracle might be but, I can tell you that being alive is a true miracle. You are the only one God made. There will be a change at some point. Being still and waiting is the hardest thing to do but that is what God has asked of us.
Pain truly becomes a part of everyday life when you are living with lupus or any chronic disease. We live in a society today that tends to believe we should not experience sickness or death. In past generations patients were treated at home. Family members would watch over them and even the children would come gather around to watch the person die. Today, when people are very ill they go to the hospital. The visits by children are usually only for a little while. The children do not see the sights or the smell of the diseases. We have become a society where it is not normal to feel pain. We expect not to expierence sickness or any bad expectations. But, these things are very real. With lupus, physical pain is bad enough, but emotional pain is perhaps even worse. This pain makes you feel like a victim. In society we can get rid of the physical pain but what about the emotional side of things? It is at this time with a disease like lupus that we can get in trouble. It is hard to handle because pain is pain. When you are going through it there is no distinction. People believe in this turmoil that Jesus has abandoned them. I believe it proves he hasn’t. He is transforming my life and the lives around me. Pain cannot always be taken away. We cannot run from it, we have to deal with it. Now, with title of lupus I feel it is even more important to have and use God’s characteristics such as the capacity to love and to be loved, to think, to feel and to act with our own free will. I hope with this image I can focus on my internal worth.
Today. I was challenged with my strong-willed child. He is the eldest and is pushing his power limits to the very edge. He has always had a manipulate root with a motivating force that seemed to drive him. He differs from the rest of the family in degree not kind. We all want to be the boss and have a drive for power. I believe that power and control are equal in context. We are a blended family. My husband had no children of his own and has become a model father for both of them. But, My son is struggling for power. My children have special needs of their own. We have to literally show them what is socially acceptable and what is not. They don’t just learn the skills that we take for granted. We have put simple steps to follow throughout the day. A reminder of sorts with signs because he would not brush his teeth…etc. You get the point. I think when I got sick, his control became intense. He is fighting for his desire to be the boss. This in turn motivates him more and pushes him stronger. He has learned the act of manipulation. This little act has changed the complete dynamics of our family. We have to remind him he is still a child. It is hard but as mothers we put all of the blame upon ourselves. Why can’t my child remember to brush his teeth or make his bed after the millionth time he has been told? Raising a strong-willed child and being sick is a very cruel joke. But, it’s just that. A funny walk through life. Just please don’t come to my house….its way to messy!
Have I told you today that I hate Lupus? I hate waking up, walking out of my bedroom and hearing….Nothing. Everyone has already started their day. I look around the house and all I see is a mess. Someone forgot their Friday folder, Someone left the milk out, and cloths are everywhere because of course nobody folded the cloths in the dryer so they were missing all their essentials. Sometimes it feels like everything is crumbling around me. Did I tell you I was a perfectionist? I might have forgotten to mention that. I guess that is getting better because before if I saw my husbands cloths lying in front of the hamper I would lose it. I am not sure why the boys in this house cannot actually dump the cloths in the container instead of right in front of it? Anyway, I am sad. I cannot stay awake more than a few hours at a time. And, now I am boring. I am not a fun mom anymore. My family tells me they love me. I know they do and don’t see things the way I do but I don’t want my life to be like this. Can anyone make it go away? Sorry everyone, I just need to vent. Lupus will not win! It may today, but not forever.