tag:blogger.com,1999:blog-23582918835418950332024-03-13T14:55:05.043-07:00Lupus RhythmsSharing music and feelings to help me through my battle with Lupus.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-2358291883541895033.post-46048613957237564362019-01-14T18:53:00.000-08:002019-01-14T18:53:24.995-08:00My Pain ScaleAn easy to access reference for rating those bad pain days.<br />
<span style="font-size: x-small;">(This is a personal scale, but anyone is welcome to use it or adapt it for their own personal use!)</span><br />
<br />
1 - bruise, scrape, etc. (generally not used when rating pain)<br />
2 - <i>background </i>- negligible (have to stop and think to identify it)<br />
3 - <i>background</i> - quiet (a quick internal check identifies it)<br />
4 - <i>present</i> - quiet (often a constant hum)<br />
5 - <i>present</i> - uncomfortable (harder to do things, takes more energy/effort)<br />
6 - <i>foreground</i> - interfering (avoiding some exertions entirely)<br />
7 - <i>foreground</i> - distracting (it's harder to think and communicate)<br />
8 - <i>foreground</i> - distressing (pain is foremost, get panicky)<br />
9 - <i>foreground</i> - incoherent (there is nothing BUT pain)<br />
10 - unconscious<br />
<br />
<br />
What I find helpful about this scale is that from 5 on, my husband can note my pain level himself. This is helpful, because sometimes I don't realize how much I'm hurting. It also helps give me some validation that my pain is real and is as bad as it seems to me, especially if he thinks it's higher than I am willing to admit.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-79210309857639297912016-07-05T14:54:00.000-07:002016-07-05T14:54:35.624-07:00Not Enough<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/6Abaa5EjOiM" target="_blank">Afterglow by Phaeleh</a></span><br />
<br />
I am not enough. Whatever I attempt to do, it is always impacted by limitations and interference that leads back to my Lupus. It is a never-ending process which I have so little control over. I can even tell where a choice is my own fault or the fault of my Lupus. Did I choose not to Swiffer because I was feeling lazy, or because it would cause more pain, or would use energy I didn't have to spare? There is no clear cut answer, and no one to place blame on but myself.<br />
<br />
I make those sorts of decisions on a continual basis, attempting to balance what I feel are my responsibilities with the very real necessity of taking care of myself. I am forced to constantly evaluate and re-evaluate my own motives, putting my decision-making under a private micriscope. No matter how small a choice, it gets examined closely and repeatedly. This process runs in the background of my mind, constantly and without end. <br />
<br />
To know this is something there is no foreseeable end to is a crushing weight. I will always be behind, attempting to catch up with all that I feel I might have done, all I could or should have done. So I will never be enough. How can I, when all this doubt and guilt is hanging over me? I can't do this alone, but to seek help only highlights how broken and lesser I feel I have become, which makes my expectations of myself all the more insurmountable. I feel trapped in a cycle where my best hope is just to endure. That is a despairing and painful way to live.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-70106779756947228342016-04-20T14:08:00.000-07:002016-04-20T14:08:17.256-07:00The Beast<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/qVi3S5_pRoM" target="_blank">What If by Coldplay</a></span><br />
<br />
Fear is an extremely powerful force, even when you don't know it is at the heart of a problem.<br />
<br />
For a while now, perhaps even longer than I'm aware, I've been struggling against something internal. It's been nagging at me, dogging my heels, echoing in my dreams, and spilling out the cracks and into the world in a rather negative manner. I've been doing my best to fight it, to keep control. <br />
<br />
One aspect of that fight is that I don't want to hurt those I love just because I'm hurting inside. Despite my best efforts, it still has been creeping out and biting at my beloved ones. I despise and resent this, but am only partially successful at clamping down on the feelings to keep them inside. My husband says it's only leaked out in minor ways, but it doesn't feel like that to me. It sometimes feels like a raging beast, clawing me raw inside, trying to find its way out. I've stuffed it as deep and as far inside me as I can, but still its roar reaches my ears.<br />
<br />
The other aspect of this is closely related to the first. That ferality is frightening and represents many things that are beyond my control. It is my helplessness, my sense of being useless, my frustration and resentment, and it is all very scary. To let it loose is to lose control, to erupt into chaos, to meltdown, and it isn't something I welcome or desire. That loss of control is the opposite of what I desperately want, and so I've fought to keep it caged.<br />
<br />
Needless to say, that hasn't been terribly effective.<br />
<br />
I wasn't even sure what was wrong. All I knew was that something down deep in the darkness of my soul was desperately trying to get out, trying to tell me something I didn't want to hear. And I knew I didn't really want to give it a chance to voice itself.<br />
<br />
It's ironic, really, that when I'm faced with major upheaval, I shut down emotionally. I've always been quite in touch with my emotions, and those of others. It's part of who I am. But when something goes very wrong, it means that my emotions become a force of nature, so I shut them off to save myself, but more importantly, to save those near and dear to me. I fear for what havoc will be caused if I let it all out. Of course, closing my feelings in is never the proper or helpful long-term solution, but the defense mechanism does serve a purpose, for a time.<br />
<br />
The usefulness of that mechanism does eventually fail, though. Today, I came to the end of that rope, and had the meltdown that apparently I very much needed, and came fcae to face with the beast inside. As I was held in the firm security of my beloved's arms, I circled with the beast, eyeing it as it snarled and paced and groaned. The more I talked about what I felt, the clearer the beast became, until I could finally give it a name.<br />
<br />
Fear.<br />
<br />
Not just a specific fear, or a basic, straight-forward fear. No, this beast was much more complex and inexplicable than that. It was fear of living, of the torture of the unknowns of each day, each hour, each moment. It was the agony of never knowing, always anxious for what could be. It was the painful ache of knowing that nothing is a given, whether you mean for the good or for the bad. You might suppose fear of dying was involved, but much much less than you'd suppose. No, much more was the fear of how long I would have to endure these uncertainties. Just imagine... the rest of my life, forty or fifty years if I'm "lucky", with every day wondering when my disease will strike, and in what way, and to what degree. Wondering if this will be what kills me. Wondering when that might happen. Wondering what it will take from me. Wondering how long anything will last, whether it is painful or relieved. Every. Day. For fifty years. Living in fear.<br />
<br />
This is the fear that runs bone-deep in me, that permeates everything, whether I will it to or not. Whether I'm aware of it or not. No wonder I'd been struggling so hard of late.<br />
<br />
The fear is back in its cage now, for the time being. It will never go away, though it might fade to a shadow for a time. Even then, it will still whisper in the shadows of my heart, a subtle counterpoint to all the ups and downs of my daily life. Acknowledging it and allowing it out takes away some of the power it holds over me, though. It blunts those claws, and muffles those roars. Some of the restlessness and pressure eases by knowing my foe's name. But it never will leave me, I don't think. There will always be a taste of it, even in my calmest and most confident moments. As my husband pointed out, it is not a matter of being weak or cowardly. It is a part of human nature, to be afraid of trials you know are coming, but cannot predict.<br />
<br />
So I will go on being human. I will <i>hupomeno</i>, endure. I will find strength I did not know I had, or borrow my husband's when I cannot find my own. I will learn to live with the fear, to let it loose when it threatens to take control, and to circumvent it in order to keep living and moving forward. Fear is powerful, but it will not rule me.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-10791890844555862442016-04-12T17:01:00.000-07:002016-04-15T19:31:40.232-07:00Tandem Diving<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/LUvPiGeo1BQ" target="_blank">Dive by Salvatore</a></span><br />
<br />
Dealing with an illness is indescribably difficult. Something about facing sickness causes an odd, reserved space within a person that is deeply private and not easily shared. Although the stereotype of a chronically ill person is that they are needy, helpless, and even lazy, that stereotype is about as far from the truth as it can get. It seems that when facing sickness that is completely out of one's control, the result is to buckle down, shut up, and try to pull through as best one can without complaint or help. I wish I knew why that was, but I've seen so many attempt it, myself included.<br />
<br />
There is this wordless inner drive to do my best on my own. I don't want to admit when I am hurting. I don't want to reveal that I feel bad, and don't want to try and explain what that means. There are no words sometimes for that "blech" feeling, it just <u>is.</u> There are times I don't want to ask for help, though I should, because asking for help means I can't do it, when I <u>should</u> be able to do it by myself... if I were healthy. Perhaps that's the key there... the aching longing to be healthy again. It is a never-ending desire to be normal again, to be able to act and feel and move and think like I did before my illness struck. That haunting desire entices me to pretend that I'm healthy again, to ignore the warnings my body is giving me, to act out the parody that it will inevitably become. It's a vicious cycle, since not listening to my body equals flares and setbacks that are dead weight to a grieving and depressed soul.<br />
<br />
This song is how my heart feels when I turn to my husband for help. "I don't wanna drown tonight," is so apropos. I drown in my symptoms. I drown in my emotions. I drown in my struggles. I drown in my perceived failures. I try to face it by myself a lot of the time, but there comes a point when I just can't anymore. Each verse starts with that feeling of teetering on the edge of being incapable of dealing with it on my own anymore. "I've been doing it myself, but now I need some help." This sort of admission is terribly difficult. Admitting that I need help means I'm not enough, that I can't, that I'm defeated. That idea aches through me unspeakably. No one has shamed me, nor accused me, nor been disappointed in my failure to live as if I'm healthy, but I do it plenty to myself.<br />
<br />
But I am thankful that I am not alone. I don't have to face any of this on my own. "Ain't nobody know me better than you know me," the song says, and that is so true of my husband. "But I know we can swim." He is always there for me, whether it is to carry something for me, to help me get up, or to hold me when it's just too much, offering his emotional strength as a bulwark. But I would never require he do all this for me, so the question asked in the song, "Tell me, would you dive with me?" represents my call for his help, my plea that he stay with me, even though I know he will already. It is both an appeal and an acknowledgment of him as my partner in my illness.<br />
<br />
Without my husband, I would be lost at sea. Holding myself away from him for his sake would only hurt the both of us. He <u>wants</u> to be there for me, and I need him so desperately. So we have come to a point where we dance fluidly with and around my Lupus, together. We swim side by side as the storms on the sea of life buffet us. None of it can separate us, and careening along in tandem with my beloved, I will not drown.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-79313497702605895062016-04-05T16:50:00.001-07:002016-04-05T16:50:27.161-07:00The Tiger in the Cage<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/ph820lekWz0" target="_blank">I Give Up by Elijah Bossenbroek</a></span><br />
<br />
You are the tiger in the cage.<br />
The lion in the muzzle.<br />
Your wild spirit is being drained<br />
Where others cannot see it.<br />
<br />
I watch as the jesses are tied on<br />
And the hood pulled over terrified eyes.<br />
I watch the lasso fall and pull tight<br />
Around a throat pulsing with fear and confusion.<br />
I watch as screams of defiance are choked off<br />
By the cold, cruel hand of reality.<br />
<br />
Don't let that spirit die,<br />
Don't let it tie you down!<br />
Learn to live free and wild<br />
Though hobbled by agonies I well know.<br />
<br />
Don't let it take the heart out of you.<br />
Let the fury come.<br />
Fight and claw for what is yours.<br />
Call out for aid from those you love.<br />
<br />
Sing and laugh and challenge the wind<br />
Find your voice and cry aloud!<br />
Show your rage, embrace your fear,<br />
Find the light around you,<br />
Savor glories passed over before.<br />
<br />
Learn to live, learn to thrive,<br />
Learn to soar and ride high,<br />
Lean on others, search out the love<br />
Grasp what matters in each day<br />
And see the good that awaits you in the dark.<br />
<br />
Could the truth maybe, possible be...<br />
That two broken wings can make us whole?Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-41759561021168484152015-11-13T20:42:00.000-08:002015-11-13T20:42:17.250-08:00Friendship<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/KINfQbfZwik" target="_blank">I Lived by OneRepublic</a></span><br />
<br />
As I learn how to navigate this new pathway of living with disease, I am realizing that some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help, how best to be supportive. So here is my list of how to be a good friend to someone dealing with disabilities or disease.<br />
<br />
<br />
<ul>
<li><b>LOVE</b> - While disability may impact who we are, we are not defined by that disability. We are people, just the same as someone with a crooked smile or flyaway hair. See us for <u>who</u> we are, love us for our hearts and inner selves. There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves. Yes, this still involves our challenges, but who doesn't have challenges? When it comes right down to it, just love and care about us the way you do all your friends!</li>
</ul>
<br /><ul>
<li><b>LEARN</b> - It means a lot to us when our friends take the time to read up about our disabilities or illnesses. Educating yourself about our conditions has many benefits! You are likely to better understand why we do (or don't do) whatever it is we've been doing. It might help you know ways to offer assistance, or just allow you to talk with us about what's going on with our health. If you have a question about our condition, ask us! The gesture of learning about what ails us is touching and shows us how much you love us!</li>
</ul>
<br /><ul>
<li><b>LISTEN</b> - Sometimes we just want to talk about our troubles. These may or may not involve our medical problems, but if they do, just listen! It can be hard to find someone to discuss things with when your health is dicey. Pity and dismay isn't really the kind of reaction we are seeking. Neither is it helpful to be assured it must be nothing when it's something that's important to us. Mostly, we just want a friend that will listen, give us their attention and understanding, who will make no more of what we say than we do. Sharing our struggles isn't a plea for being coddled, honest! Our feelings need to come out, and having a safe person to confide in can mean the world.</li>
</ul>
<br /><ul>
<li><b>LIVE</b> - What do you like to do? Likely we like to do that too. How do you live your life? We do the same things. These are opportunities to connect, to spend time together, to offer the company of a friend. Sure, we might regretfully decline an invitation, but that doesn't mean you shouldn't invite us the next time. Or the time after that. Even small things are worth doing together, as friends should. Movie night on a couch can be just as fun and fulfilling as movie night at the theater, maybe more so! Spending time in the kitchen, laughing and talking, is absolutely invaluable. Live your lives with us, include us even if you aren't sure what we'll say yes to. It will mean so much to us that you have included us.</li>
</ul>
<br /><br />
Perhaps it takes a little more effort to be friends with someone struggling with a health issue. Or maybe once you begin, you find it is easier than you thought. There really isn't a secret formula, except to just <u>be</u> a friend. We will do the same for you! When all else fails, let's talk! Let's plan! Ask us how to help, how to do things together, and I bet any of us will be happy to share our thoughts and ideas. Friends are jewels in life that are to be treasured, especially in times of trouble. So let's be friends!Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-69489768666582977212015-10-31T13:35:00.001-07:002015-10-31T14:03:08.877-07:00I Was Not Fickle<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/OGXMgDPrs1k" target="_blank">Through the Seas of Life by Pilgrimage</a></span><br />
<br />
Today is a very relaxed, quiet day. I am finding myself vacillating between peaceful contentment and having much too much room for deep thoughts. The end result has been a little surprising, as I've come to terms with something that's bothered me for a long while.<br />
<br />
You see, for years now I have struggled with housework and exercise. I'm sure you are thinking, "Well of course, we all do!" However, I'm not sure it is quite the same thing. You can make comparisons all you want with broken New Years resolutions, but it just doesn't feel the same. I followed the same cycle, over and over again, with great agony of spirit, and yet still somehow couldn't break out of it. It is bittersweet to realize there might have been a reason for that.<br />
<br />
I will be the first to admit openly that I am not very good at housework, despite being a housewife by choice. I don't like to wash dishes. Many household chores are tedious. But despite that, I've always had a gratitude and appreciation of having a home to live in, furniture that's comfortable, kitchenware to cook and eat with. I have a desire to look after these things properly. It almost feels ingrained in me. In fact, I've wanted to be a wife and mother since I was very small, and was delighted to be able to achieve both by the time I was 25. Imagine that, achieving one's life goals so early! I am <i>happy</i> to be a housewife and a stay-at-home mom! <br />
<br />
Please understand... I really and truly wanted (and continue to want) to care for my house and household. I adore folding clothes, for example. I find it very therapeutic to sit quietly, methodically folding while I hum and sing with soft music. I enjoy the logic of mapping out how I want to vacuum a room, and find it very satisfying when I'm done. There are aspects to tending the house that I savor, besides the end result of the feeling of a job well done. My heart is in the work.. or would be. This is, after all, my chosen profession!<br />
<br />
My record with keeping up the house and myself would not reflect that, however. There have been spates and periods where I have managed to keep things rolling the way I wanted to. I can recall when we first moved to our current city. I loved the house, and wanted to take good care of it. I rose early, blissfully inhaled the cool freshness of the dawn air, and set to work taking care of family, house and self.<br />
<br />
I don't remember now how long that honeymoon period in the new house lasted. I was able to keep up the early rising and whistle-while-you-work attitude for a while. But inevitably, at some point I stopped. I grew tired. I lacked the <i>oomph</i> to keep getting up so early, to keep working at the chores. As this happened, I began to rage at myself. Why oh why could I not just keep things going positively? Why was I so weak-willed? Why was I so fickle in my intentions?!<br />
<br />
This same pattern applies to exercise. My original suspicions for Lupus began after my son was born. Shortly thereafter, I began to try exercising to shed the baby weight. I loved Tae Bo, in fact, and did it faithfully... for a time. But since then, I've only ever been able to keep up an exercise routine for a short time. Am I that lazy? Do I care so little for my physical health? Don't I know exercise helps the emotions as well as the body?<br />
<br />
Today I have come to the conclusion that it was not my will that was at fault. It was not that I was wishy-washy, fickle, or lacking determination. My intentions were there, strong and firm. It wasn't my heart or mind that failed me. It was my body.<br />
<br />
My lackluster feeling concerning my chores or exercise were not due to any fault of my own, nor to any lack of desire. I've noticed that emotions often get tangled up in what my body is trying to tell me. When I hurt badly, I get cranky. When I hurt for extended amounts of time, it makes me weepy. When my strength or energy lacks, it weighs on my heart. When my brain is foggy and sluggish, I feel ineffective and clueless. So when my body would deny me those activities my conscience told me I should be doing, I felt guilty and angry with myself.<br />
<br />
I have carried this guilt and anger with me through the years. The self-recrimination has been unwavering. So many times I've tried to firm up my determination and tackle those chores. I've tried being methodical. I've tried schedules. I've tried to look at things one item at a time. I've tried madly working when I've had the urge, in order to get as much done as possible. I've tried badgering myself, guilting myself, scolding myself, shaming myself, cheering myself on, pulling myself up by my bootstraps... all to no avail. Just imagine for a moment... fifteen years of beating myself up over this failing.<br />
<br />
Except it isn't my fault at all.<br />
<br />
This may take a while to let go of. My cynical side wants to add, "if I can at all," but I'd like to believe better of myself than that. It's time to stop telling myself I can't because I'm terrible at my chosen job. It's time to try and grasp that I will do what I can, and need to find new ways to cope with the parts I can't manage. I haven't the faintest idea of how to accomplish that just yet, but at least I've set myself on a better path now. At least I can look behind and acknowledge, look at myself and accept, and just maybe look ahead with hope and understanding.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-73989089777038841492015-10-22T15:15:00.000-07:002015-10-22T15:15:04.444-07:00Grieving<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/qCDnaEkuJu0" target="_blank">Let Go (Sir Sly Remix) by RAC</a></span><br />
<br />
Sometimes it's the big things. Sometimes it's the small things. But eventually, it gets you. The grief, the sorrow, the agony of spirit. It overwhelms almost everything else, swirls around you with currents you can't predict or deny but most certainly can feel as it swallows you whole. For a time, you can ignore it. The grief gets pushed to the back of your mind, you let normal (or as normal as you can manage) life drown it out. But as disease intrudes further, as it touches more of that normal life, as it slowly seeps into every aspect of daily life, and as it begins tearing away the things you love, it no longer is something you can ignore. It isn't something you can keep inside, no matter how hard you try.<br />
<br />
It wells up from deep, making your heart feel heavy and giving lie to your smiles. You are probably adept by now at covering how you are really feeling, so maybe those near you can't tell how you are struggling emotionally. If you are very lucky, you have one or two people who know better, and can see it in your eyes, feel it in your touch, and instinctively reach to comfort you. But even then, you hold it back. You stifle the tears, refuse the sobs, bury the screams, strangle the wails. You automatically do this just as long as you can manage, carefully hedging in your pain and sorrow so that it won't contaminate your relationships, or taint those you love most.<br />
<br />
But that never can last. Eventually, it must come out. It has to be released, or it will poison you. I know it is your instinct to hold it in, hold it close, but I can assure you, it won't work. To be healthy, to learn to accept and move on, you must at some point let it go. Open the floodgates. Find a way to express yourself, whatever works and hurts no one. Scream somewhere safe. Curl in a loved one's arms and cry it out. Take to brush or pencil to let it sprawl across the page. Find something to demolish and have at it with all your strength. Or pour it out with words for others to read and relate to.<br />
<br />
Whatever your method, let it out. Let it go. Express it, let it wash through you, and spew out again so it can't hurt you anymore. Allow yourself these feelings, admit that you hate what disease has done to you, rage against what it has taken from you. Release every bit of it, so that you can lift beyond the cage disease has built around your heart and spirit. Let loose the weights so you can find the way to soar once more, rising above your limitations and boundaries. Let it wash you clean again, become an empty vessel, ready to fill with good things once more. Let go the fear, the anger, the pain, the sorrow, the futility, the sense of being trapped, so that you can find again your joy, your contentment, your peace, your love, your serenity.<br />
<br />
Please. Let it go. You have helped me to let go. I hope I have helped you to let go too.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-46759717968997789592015-09-01T19:47:00.000-07:002015-09-01T19:47:00.047-07:00Guilt of a Different Sort<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/c8-QPnnM7j8" target="_blank">Always This Late by ODESZA</a></span><br />
<br />
I recently found myself struggling with a new sort of guilt. It seems outwardly like a rather silly thing to fuss over, and perhaps it is for some. For me, however, perhaps this is part of the grieving process. Either way, it was (and somewhat still is) a valid thing to mull over.<br />
<br />
It was prompted by some subtle and some overt things happening that got me thinking. Many people who are facing a serious illness, especially one that could potentially kill them, end up in a certain frame of mind, or so it seems to me. This involves a way of thinking that's very close to the very popular idea of "YOLO" (otherwise known as "you only live once"). Specifically what prompted me was seeing that a friend of mine had taken her daughter and her friends out of school and driven them, with their horses, to the beach to spend the day. A surge in the desire to set aside normal life and live to the fullest appears, to me, to be a natural way of dealing with one's sudden awareness of the fragility of life.<br />
<br />
My difficulty is... I feel very little of that sentiment. It hasn't occurred to me to pull my child out of school to simply go do something fun. I don't think in terms of, "I want him to have happy memories while I can still make them with him." Faced with the realization of this, I have to wonder... what is wrong with me that I don't feel this way?!<br />
<br />
That is not to say I don't want him making memories. I do! But I only feel as much pressure and need to help him create them as I would if I wasn't sick. I feel only bound by the time he has left being a 'child', not the time I may have left. In fact, I don't generally think of "time I have left" at all, except out of a vague, nebulous fear of hospitals and such. I feel no urge to go do something extravagant, adventurous, or unusual merely because of my Lupus. I mean, I'd love to go hiking in the mountains (not gonna happen, but I can wish!) or strolling along an ocean cliff, but that is because I love those things, not because I have a limited lifespan.<br />
<br />
But in discussing this with my husband, he had a very simple response. "You are content."<br />
<br />
That statement, both then and now, stops me in my tracks. I am content? It both feels like it's entirely true, deep down, but also seems utterly foreign an idea. Content? How can I be content?! But it seems I am. Even with my Lupus, I have a contentment that is somehow... transcendent. It rises above and hovers below. But it goes beyond contentment. I also feel ultimately safe. But that makes a great deal more sense to me than being content.<br />
<br />
Upon talking with him more about it, I also decided that my contentment was partly due to preferring a quiet life. I am indeed content to be here, in my home, attending church services, having good friends visit, and carrying on normal life with my family. This is the good life, you see. This is what love and memories are made of. Not big adventures to distant places. Yes, those must be amazing memories, but is my life somehow incomplete for it? Not at all. I don't feel I've missed out on anything if I never see Ireland, or never walk the Great Wall of China. For me, all the pleasures of life are here, in the home, with my beloved ones.<br />
<br />
But that is for myself. What of making memories with my son? That is harder for me to cope with. Am I somehow denying him something I should be providing? Does he need me to take him special places, or need me to set aside much more time to spend together? Perhaps. I can't answer that. The only way to truly know if he needed it would be to look back and see from some future point. Does that mean I should then make a great effort to fill a gap that may not exist? Somehow I can't find it in me to say definitively yes. He is rather like my husband and I... he is a homebody, enjoying the comforts of home and family and familiarity. We spend quite a bit of time together... perhaps not what some would consider "quality time", but I can say with certainty that he knows I love him, that he is of great importance to me.<br />
<br />
And yet...<br />
<br />
There is a lingering, nagging feeling that I've got it wrong, and everyone else has the right idea. I mean, what could be wrong with putting out the extra effort to make life special, just in case things go awry? Is living the quiet life, sharing love and snuggles, and trying to keep things as 'normal' as we can... is that not enough? This is the sense of guilt that is nagging my steps during this time of birthdays and gospel meetings. Is the life I'm giving my son enough for him to treasure during the future, when I'm gone? Is it enough to comfort him, enough to make him never forget how much I loved him?<br />
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All I can do is try my best, pray that it is enough, and try to let go of this concern that I should indeed feel guilty for not taking more action on something that seems to be such a basic human nature.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-32331900061078753652015-07-28T10:19:00.000-07:002015-07-28T10:19:40.276-07:00To Define Or Not To Define<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/gh6_nrF1rAc" target="_blank">Don't You Know by Gramatik</a></span><br />
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I read <a href="http://themighty.com/2014/06/my-sons-disability-defines-him-and-why-im-ok-with-that/" target="_blank">an article on The Mighty</a> today written by a mother about her son. There is a quote from her article that I have adapted to fit myself.<br />
<br />
"My disability <i>is</i> defining. It is <i>not </i>a side note. It is <i>not</i> a post script. In the story of my life, my Lupus will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterword. It will be front and center, along with my strengths, my flaws, and my accomplishments."<br />
<br />
In her article, she is discussing her son who has spina bifida. She is arguing against the idea that disabilities should be downplayed in importance by how we talk about it. I have heard before that I shouldn't let Lupus "define" me. She asserts that such a huge thing clearly plays a large role in defining a person, and I agree.<br />
<br />
If I try to separate myself from my Lupus, to only perceive myself aside from it, I will forever be trying to hold back the ocean with my hands. It cannot be done. It is a part of me, a part that will remain with me the rest of my days. As depressing as that may sound, it is not evil unto itself. It is not a curse. It can be a blessing, it can be uplifting. It is what I make of it, but it is still PART of me. Irrevocably.<br />
<br />
I am not saying that I am by any means proud of having this disease, or that I will flaunt it somehow as a badge of honor. It is just something I must overcome, that I must learn from, just like someone with asthma or a bum knee. It is a daily item to contend with, and it has changed how I view the world, and how the world views me. That can't be swept under the rug, ignored, or treated like something I'm taking onto myself that I shouldn't. I have every right to 'own' having Lupus. <br />
<br />
I have seen an amazing amount of shame showered on Lupus patients who are struggling with their diagnosis... by other Lupus patients! They are admonished not to let Lupus change them, or to not let it keep them from doing something, or other such things. I'm sorry, but I'm not <i>letting</i> Lupus keep me from things I love... it simply is doing so whether I will it or not. It's a fact of life with Lupus. That doesn't mean I stop liking to do those things. It just means I can't right now. And I might not ever again. But that hardly is letting Lupus "win". <a href="http://lupusrhythms.blogspot.com/2015/01/acknowledging-feelings-is-not-giving-in.html" target="_blank">Feeling upset over the disease is not letting Lupus "win" either.</a><br />
<br />
I'm fine if others don't wish to define themselves by their disability or disease. I get it. It may be important for them to designate that separation between who they are and what they have. For me, I need solidarity of myself, a harmony of who I am and what I am going through. I have a son, so I am a mother. That can be hard. I have a husband, so I am a wife. That can be hard too sometimes. I have Lupus, so I am diseased. That is hard, sometimes extremely hard, but that is no less true or identifiable as <b><u>me</u></b> than being a mother or wife. The only difference is that I did not choose it.<br />
<br />
So thank you to <a href="http://www.whatdoyoudodear.com/about/" target="_blank">Mary Evelyn</a> for giving me words that evaded me before. Now I have a firmer sense of what I feel and mean when told <i>not</i> to let Lupus define me. How I define myself is up to me and only me. And I have Lupus.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-83457703494543217112015-07-20T21:40:00.000-07:002015-11-04T12:01:04.884-08:00A Caregiver's Confession<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/gtE0J1FEX9E" target="_blank">I'd Be Lying by Greg Laswell</a></span><br />
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Recently I wrote <a href="http://lupusrhythms.blogspot.com/2015/07/fears-confessed.html" target="_blank">a post about my fears.</a> Afterwards I shared the six fears with my hsuband. When he asked me why I was afraid of depression, I found I couldn't manage to summarize or read aloud what I had written. It simply was too difficult and real for me to articulate. I told him he'd just need to read it himself in order to understand.<br />
<br />
What happened after he finished reading was entirely unexpected.<br />
<br />
After giving me a big hug of comfort and understanding, he surprised me with a revelation. He told me, "I understand, because those are my fears too." I was floored. <br />
<br />
"You fear the same things?" I asked in astonishment. I knew I wasn't the only one with fears, but for him to tell me that he feared the same things was extremely enlightening. Of course, his side of those fears were different than they were for me, but they still were the same things.<br />
<br />
He was afraid of the first three for essentially all the same reason. My dying, hospitals, and me dealing with lingering suffering all amounted to his gut-deep anxiety of watching me suffering. He told me he doesn't like to see me hurt, and the idea of seeing me in such dire straits as those three things would involve would be one of his worst fears. He is not an overly emotional man, but it was clear to me that this affected him strongly. I know the lengths he would go to in order to prevent me from having to go through any of that, even if it meant he had to bear it himself.<br />
<br />
That these things crossed his mind when he entered hospitals or ERs really touched me. I have done my best to keep my uneasiness to myself, as clearly he has too. We have occasion to visit folks in the local hospitals reasonably often, so this isn't a once-in-a-rare-while thing. It definitely made me feel much less alone to realize he shared my trepidation when we go into one.<br />
<br />
His fears concerning my medications are pretty much right in line with my own feelings about them. He too is glad they help me, but is also afraid of side-effects, of them not working, and afraid of the unknown we face when something new is introduced. Even if he isn't the one experiencing these things first-hand, he does have to deal with helping me through them. He's always right there, walking beside me as I struggle with whatever is going on. He knows. He feels it too. I can't tell you how much that helps.<br />
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He's always been worried about the possibility of having to leave me alone in the world, even before my health declined. He's just that sort of loving, caring man. But the thought of me struggling on by myself with my Lupus is almost more than he can bear. We both pray dearly that nothing will take either of us away from this world, because neither option is at all bearable to think about. We need each other. It feels good to be valued that way, Lupus and all.<br />
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Last of all is depression. I feel for him in this fear, because as hard as it must be to spiral into that darkness, it must be so much harder to watch one you love so dearly fall into unreachable darkness. His fear here is painful to see, because the anticipated agony is so visible to me. His worry is that I will slip beyond his ability to call back, that I will succumb to these fears and the despair that Lupus weighs on a person. He is afraid of watching me move beyond the influence of his love. We always work on problems together, and it would be wrenching to have something like depression remove that. That is the crux of his fear concerning my becoming severely depressed.<br />
<br />
As odd as it sounds, it comforted me greatly to hear him confess to these fears. I've told him in the past that he shouldn't hide his worries from me, that knowing his fears help me not to feel so alone, as opposed to taxing my emotional strength. This was a prime example of how true that is. His opening up to me about his feelings and fears helped me to lean on him, and let him lean on me in return. Together we'll muddle through. Together we are stronger than trying to wrestle with these things alone. I am so grateful and blessed to have him as my husband, my soulmate, and my biggest source of support, comfort, and love.<br />
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To all the caregivers out there, most especially the spouses, a deep and heartfelt thank you.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-25558446701103774592015-07-14T22:39:00.001-07:002015-07-14T22:39:57.231-07:00Fears Confessed<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/4qDoRedKBoU" target="_blank">Ow by Stephan Moccio</a></span><br />
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I have wanted to work on this post (or series of posts) for some time. Originally I intecded to title it as "Secret Fears" since they aren't things I prefer to discuss, even with my husband. However, upon reflection, I realized that these are not likely to be so secret after all. Some of them make a lot of sense, and perhaps others have had an easier time discussing them with their loved ones. Either way, I'd like to list things I am very fearful of in relation to my Lupus, and explain how I feel about them and why, if possible. So deep breath, here goes.<br />
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<b>1. Dying</b><br />
<b><br /></b>
This may seem like an obvious fear, for me it isn't about what you may first assume. Yes, I'm afraid of dying. Yes, I'd rather avoid it. But that isn't my not-so-secret fear. My fear here is of leaving my loved ones alone and bereft. It would break my husband's heart to lose me, and would cause the sort of grief to my child that no mother would wish upon their beloved children. I am afraid of my son being scarred by my death. I am afraid of how deeply pained my husband would be to face funeral arrangements for me. I am afraid of the bills I might leave behind, not at all the sort of reminders I want him to have to tackle in the days, months, or years after I'm gone. I am afraid of dying because of the grief it would cause my family and friends.<br />
<br />
<br />
<b>2. Hospitals/ERs</b><br />
<br />
This is a bit more visceral and instinctual. I am afraid of the hospital because I fear I will one fateful day end up in them. I am afraid of the dire straits I'd be in that would lead me to be hospitalized. I have this looming dread and certainty that I <i>will</i> end up in the ER at least some day. I scare myself with imaginings of the catastrophic series of events that might lead me there. I still go to the ER or hospital to visit friends, and I am able to shake the creeping feeling of anxiety and worry for myself, but it almost always is there when I first set foot inside. Think of it like how we all felt about the principal's office when we were in elementary school. Even if we had good and legitimate reasons to be in the front office or (gasp) the principal's office, it was a place we cringed at having to go near. It also is related to the first fear, that of dying, because after all, if something went so wrong as to land me in the hospital, that might just be the time it kills me.<br />
<br />
<br />
<b>3. Lingering Suffering</b><br />
<br />
I have this lingering dread when I hurt that I never will stop that particular round of pain. When I flare, I worry that life will be like that all the time. It can make it nearly impossible to be objective about my state over extended periods of time. Time slows when I hurt, so the idea of that stretching on and on... it can be nearly unbearable. This is part of why I don't like the "buck up and live life" attitude. Sometimes it just isn't possible to sludge through both hurting and despairing to act happy and well-adjusted as some folks seem to think I should. Not when the pain drags on, and all I can see before me is more of the same. My spirit quails at the very thought. Thankfully I don't have to face that, and there always has been a reprieve of some sort. I simply am afraid that one day there won't be.<br />
<br />
<br />
<b>4. Medicines</b><br />
<br />
This is a two-edged sword. I am both afraid of and grateful for my medicines. I am fearful of the new medications I may be put on, and hopeful too. I am afraid of side-effects, some of which could be quite devastating. (I have heard of some folks whose bodies reacted violently to some of these drugs.) I am very much afraid it won't work. I fear it won't work well enough. I dislike taking so many pills, and am afraid of shots and infusions. I don't like needles at all, really, and IVs have never gotten along well with my veins. Taking chemo drugs is scary all by itself, truthfully. One never wakes up one day and suddenly think, "This time next year, I'll be taking over fifty pills a week." It just isn't something you want to see for your future.<br />
<br />
<br />
<b>5. Being Alone</b><br />
<br />
As much as I fear leaving my husband alone, I also fear being left on my own to face this disease by myself. I don't feel like I could do it. The practical side of me insists I'd find a way, of course, but my fears are not generally very practical in nature. They are seated in my heart, which aches with the idea of dealing with all this alone. I am so very deeply grateful for my husband and all the support, love, and understanding he provides. Without that, I would be lost. Truly. I need that strength, courage, solace, and support. Without it, I would surely fall into an unending pit of despair. Which brings me to my next fear.<br />
<br />
<br />
<b>6. Depression</b><br />
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This is one very real, very terrifying yawning depth to which I can easily see myself falling. It goes beyond unhappiness and beyond logical fears in regards to pain. It is its own reality, its own world of darkness. Just imagine, for a moment, one of the worst moments of your life. It doesn't matter whether it was an emotional one, a physical one, something you saw happen to someone else or something that happened to you personally. Just for a moment hold that event in your mind. Now imagine that event happening for the rest of your life. That same thing, to varying degrees, over and over. For a few heartbeats, know deep down that you will endure that until the day you die. That same wrenching, painful, despairing, blindingly difficult event, stretching for the rest of your life. Sometimes that is how it feels to face a life-long disease. Some days it is softer, less prevalent, but it is always there. That sort of knowledge tugs at a person's spirit, leadens the heart, saps the energy, causes a pain all its own. It's unspeakably hard. That is why I fear depression. For me, it could very well become reality if I can't find the strength to haul myself out of that dark pit and press on.<br />
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<br />
These are by no means the only fears I wrestle with. I know they are terribly dark and uncomfortable, but they are my life, they are what I face and move past, or try to. Perhaps you face these same fears. Perhaps someone you know is struggling with them. Love, compassion, sympathy, understanding... these are things that help combat such difficulties. It can't be done alone. Love those close to you. Give to them these gifts to help them along. Accept such gifts, for we all have fears we must overcome.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-40803579323617041412015-06-25T15:49:00.000-07:002015-07-17T21:47:04.509-07:00I'm Still Here<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/x3hDrIvqnP4" target="_blank">I'm Running by Yes</a></span><br />
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Today I was watching a movie that I find quite enjoyable. It was only my second time watching it, but I was finding it just as entertaining as the very first time. However, something significant struck me this time around, and I want to write about it.<br />
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The movie is full of young people doing active, energetic, daring things. They are leaping, climbing, jumping, falling, challenging themselves physically. At points during the movie, I've paused it to go get laundry, hauling it up and down the stairs. Sometimes that can be difficult or outright impossible. Today it isn't. Today is a green day, a good day. As I was heading up and down the stairs, it occurred to me that there was a spring in my step, a surge of energy that normally is lacking. And all of a sudden it hit me.<br />
<br />
That used to be me.<br />
<br />
When I was younger, before Lupus touched my life, I was very active and energetic. I was bouncy. I would skip down the grocery aisle with a cart full of stuff. I went hiking. I climbed rocks. I would jump and skip steps, up or down the stairs. I would take the path less traveled because it was more fun and challenging, and gave me a new perspective. I loved to run, to feel my muscles flex and the air expand my lungs. (Just to be fair, I mostly would just sprint for the fun of it, not really marathon-type running.) I did all of this for fun. Because I felt like it. Because it was just me.<br />
<br />
Lupus has stolen this part from me. Stairs are a challenge most days now. I almost never skip under any circumstances. I can't run and chase and race my son, like I'd always imagined I would. I can't go hiking or horseback riding or rock climbing. I can't even get to the rocks in order to climb them these days! It's really rather depressing, and I've been struggling with accepting this new me. Trying to turn away from what used to be and find the new me.<br />
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Only problem is, today I realized something. I'm still here. That me, the old, energetic me, is still <i><b>here</b></i>, inside. It isn't a matter of "If only I could feel better, I'd find the energy to get into shape and be able to do that again." It's a matter of, "When I have more energy, I find that part of myself again!" It's there, waiting, lurking, still part of who I am. The me that loved to do Tae Bo because it made me feel powerful... the me that laughed and danced and spun with my son for the pure joy of it.... the me that would step off the sidewalk just to step up on a rock and jump off onto the sidewalk again... that me is still <b>here</b>. I am still me.<br />
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There are drawbacks to this discovery. Part of me is really rather thrilled that I haven't lost that aspect of myself entirely, that it simply is buried under pain and tiredness and illness. But the flip side of the coin is that it's a part of me I can only rarely glimpse. It's hidden, buried deep, swamped and overwhelmed by this horrible disease. It makes me resent Lupus more. How dare it steal that part of me, that vital and vibrant part of me that used to shine so bright! It's buried so deeply, my own son doesn't even know that it is a part of me. If I suddenly was Lupus-free, he would be baffled by my energy level, by my bounciness, my goofy antics, my desire to be out and doing. He doesn't associate the current me with the <u>real</u> me. How sad is that?!<br />
<br />
So there it is. The inner me battling with the outer me. How do I keep myself intact, whole, and sane under these conditions? Not sure I have that answer just yet, but it's gotta be here somewhere, because there is an amazing surge of <i><b>joy</b></i> when I realize I'm still me, that what I identified as myself still exists. That can't be a bad thing, right? So I just have to find these nuggets of happiness and hold on tight. I refuse to lose what I now know is part of me, even if I can't access it. Just like I refuse to let go of being a horse-lover. I may not be using these aspects of myself right now, but they are still there, they are still part of my identity, and I will hold onto them tightly as the treasures they are.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-3409990803255107202015-06-06T10:29:00.000-07:002015-06-06T10:29:42.901-07:00I Am The Tiger<span style="font-size: x-small;">Post Soundtrack: <a href="https://youtu.be/fZsPXAUYG0A" target="_blank">Unto the Burning Circle, by Andreas Vollenweider</a></span><br />
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I have been re-reading Jennifer Roberson's Tiger and Del series. It's the first time I've gone through them again since my diagnosis, and I'm finding it somewhat self-enlightening. Partly this is because several times these books describe excruciating pain, which I hadn't understood before, but do now. But it was in the fifth book that I ran across a correlation that I had not expected to. I wanted to share, to put my thoughts into words, so that others could see the truth of them.<br />
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Fair warning, I'm going to explain things that will be spoilers if you haven't read the book series and intend to. This post is meant for those who either have already read the books, or don't care to read them. This will indeed reveal things about the events in the books that you may not want to know ahead of time.<br />
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First, a little information about Tiger. He's the main character, and the one I am going to relate myself to later on. He began life as a slave, whipped and beaten and scorned. When a sandtiger appeared and began to kill the children of the tribe he was a slave to, he took a sharpened stick as a spear and killed it to win his own freedom, but not before the sandtiger left its marks on his body, including four clawmarks across his cheek. The slave boy took the name of the creature that bought him his freedom, and he became known as Sandtiger, easily recognizable by the marks on his face. He left the tribe and apprenticed to become a sword-dancer. He was a very good one, and won himself much fame, a name among men. Later he faced off with a sword-dancer of equal skill, and ended up with a deep scar in his belly, a reminder of a dance he won but that nearly killed him.<br />
<br />
He went sailing to find where his genes were from, and ended up on an island with a particular quirk of culture. They had priest-mages that embodied magic, that could use magic. However, it was believed that the magic drove them mad, and so they were shunned from polite society, relegated to their own island, where they became their own world. They were known for being shaven headed, with blue tattoos across their scalps, rings in brows and ears, and magic in their blood.<br />
<br />
Now Tiger had been having growing issues with magic, as he went about his travels. He would feel uncomfortable prickles and creepy-crawlies when magic was near, and it would make him vomit if it became too intense. When he came to the island, he began to suspect there was some connection between himself and those mage-priests, but he despised magic. He hated it, wanted nothing to do with it. But because of the way that society worked, soon he had no choice.<br />
<br />
The mage-priests stole him away, kidnapped Tiger to become one of them, one of their own, to save the public from the danger his supposed impending madness. Tiger was overcome by their magic, and with magic they removed all scars and indications of his history on his body, putting those on a corpse they left to be found by everyone else. Then they left him to languish atop a spire, one he was expected to leap from. Disoriented, befuddled, he fought with that impulse to leap, but eventually leap he did. He survived, but met the world as a confusing muddle of new sensations. Sound hurt. Light was too bright, colors too fierce. His magic had come alive, and it was uncontrolled, leaving him reeling most of the time in confusion.<br />
<br />
As he stabilized, grew used to his new awareness, they began to indoctrinate him. His old life was gone,t hey told him. He was never again to be who he was. He was not the Sandtiger any longer. He clung to the one thing left him that connected him to his life before... the string of claws he'd worn since killing the sandtiger as a teenager. In what was meant to be a final step in brainwashing him, his head was shaven, his scalp tattooed. They cut the necklet of claws from him, then tossed them away one by one over the edge of the spire. They then cut the pinkies from both his hands, robbing him of a vital key to the ability to wield a sword. Brutally, they tore everything from him that helped him define who he had been before.<br />
<br />
Tiger outwardly submitted to them. He mouthed the words of chants, followed the rites, performed the tasks. But inwardly he clung to who he had been, refused to let go. One night he dreamed a vivid memory of the sword-dance that had nearly killed him. When he woke, the deep, ugly scar once more carved into his belly. His magic proved to be a means to regain himself, and he knew he could triumph. Another night, taking a sharpened wooden stick with him to sleep, he dreamed the memory of facing, wrestling, and finally killing the sandtiger. He awoke to a still bleeding cheek, now scored once more with four claw marks. He also found he had killed the man who had worked hardest to remove his past life from him, impaling him with the rudimentary spear.<br />
<br />
It was time to leave, whether they wanted him to or not. He descended the spire and found most of the claws that had been thrown off the top. He cobbled a raft together, and left the island to find and win back his old life.<br />
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<div style="text-align: center;">
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</div>
<br />
So now I will tell you what I realized after I finished reading, the correlation that struck me strongly. You might suppose that the magic was my Lupus, the source of all my trouble, and Tiger's. But it isn't. My pain is the magic. The very thing I despise, but that helps drive me, make me stronger. No, Lupus is the priest-mages. How hard it seems to try to strip me of who I was before. It piece by piece removes the means by which I defined myself previously. <br />
<br />
<b>My long hair?</b> Snipped short to prevent further agony of spirit. <br />
<b>A horse-lover?</b> What kind of horse-lover can't sit astride a saddle and ride?! <br />
<b>A gamer?</b> I no longer can pvp or raid in World of Warcraft. It hurts too much. How can I be a gamer when I can't even participate in the basic enjoyments of the game?!<br />
<b>My ability to skate?</b> Gone. No strength, no energy, no gracefulness. It's all gone, wasted away.<br />
<b>My devotion to being a Christian?</b> Half the time I can't even attend services!<br />
<b>A mother?</b> What kind of mother is sleeping when her child gets home from school? What kind of mother flinches from her child's touch?<br />
<b>A home-maker?</b> My windows are filthy, my carpets are unvacuumed, dust is everywhere, and my hsuband does the dishes and cooking. My son has to help me do laundry. That's not the mark of a home-maker!<br />
<b>A wife?</b> When I force him to take up the slack of my inability to manage the house? When he must bear the brunt of my tears and rage when I cannot contain them anymore? When intimacy is rare, because either I am too tired or hurting too much? What kind of wife does that make me?!<br />
<br />
So many things that Lupus tries to wrench from me forcibly, and me without the means to stop it. Just as Tiger was helpless before the magic of the priest-mages, so I often feel helpless before Lupus' ravages. As befuddled and confused as he was, having to face a new kind of life, so I feel, seared by normal circumstances that no longer feel normal. Just as Tiger felt despair and agony of spirit, so do I, as I watch what I was melt away.<br />
<br />
But like Tiger, I choose not to let Lupus (the priest-mages) have its way. I fight to retain what I can of who I was. Some things I choose to let go, dross to be stripped away and left behind. I do not need to define myself as having long hair. That is not who I am, and so it is allowed to fall. Other things, I redefine. I cannot ride, true, but that does not mean I love horses any less. It is the creature I love, not the action of riding. I still can define myself that way, it still applies, and I refuse to let Lupus have its way in making me give it up as part of my heart. And then there are the vital things to me, the things that truly define me. These I hang on to doggedly, refusing to let my short-comings determine my suitability. I can still be devoted to God, even if I am forced to stay home from services. I have found other, additional ways to serve as well. Instead of becoming weaker, I am now stronger. My bond with my husband and child have grown stronger as they knit themselves to me to help hold me up. I become more defined in our relationships because of my pain, my limitations. <b>Lupus will not defeat me.</b> I reclaim myself. I acknowledge and work around the pain. But I will not let it have its way.<br />
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Like Tiger, I daily pick myself up, cling to those things that make me who I am, and find my way back into the world that Lupus would keep me from (as the priest-mages attempted to keep Tiger from the world). I refuse to accept the fate, the life that Lupus wants to insist I must have. My life is what I make of it, not what Lupus makes of it. <b>Period.</b>Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-76398989482755599882015-01-17T10:32:00.000-08:002015-01-17T10:32:36.879-08:00Acknowledging Feelings Is Not Giving In<span style="font-size: x-small;">Post Soundtrack: <a href="http://youtu.be/ZKAxgYCKt8g" target="_blank">Talk, by Coldplay</a></span><br />
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Since the start of the new year, I've been struggling with something. While others were making resolutions to eat better, exercise more, whatever, I was making my own pact with myself. I'm realizing now that it wasn't really a conscious thing. It was an instinctive coping mechanism, I suppose, a way of attempting to protect myself and my emotional health. The problem with making a secret pact with myself is that I was holding myself rigidly to it and it was making me distressed without quite knowing why.<br />
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It took talking things over with my husband to realize what I was doing to myself. I had determined that with the upcoming year stretching out before me, I would keep a positive outlook on my Lupus and general health. That doesn't sound too damaging, now does it? However, there is one key aspect of this that makes it completely unreasonable. I was enforcing this on myself at all times, regardless of my actual feelings.<br />
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Sure, there are plenty of people out there, some of whom have gone through similar or worse circumstances, who will encourage people like me to buck up, to stay positive, to put a smile on, to man up, to not let it get me down... and while all of this advice is well meant and generally a good idea, its fatal flaw is something that generally is not addressed in public society.<br />
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Being sick stinks.<br />
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I don't care how up-beat and cheerful you are, if you are chronically sick or suffering a disease, you have emotions that crop up that simply <i>must</i> be dealt with. It is essential to our mental health that we admit how unpleasant and horrible our situations are. Anger, frustration, depression, despair, unhappiness, feeling defeated... these are all <i>natural</i> emotional responses to facing being sick for the rest of your life, however long that might be. To pretend that they can be brushed aside in favor of a more positive attitude is to invite deeper depression and a lasting sense of hopelessness that can only have a negative impact on our health, even if the outward indications are that we successfully are keeping a good attitude.<br />
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Something that is vital to understand is that acknowledging that we have these negative feelings, allowing ourselves to take some time and space to feel them, is not by any means an indicator that we are giving in to our sickness and giving up. I have noticed that those around me who also suffer from life-long problems sometimes tend to rail against being sick, refusing to do things to take care of themselves because they don't want to be seen as sick, don't want to define themselves as sick. While I completely understand this perspective, my recent revelation of how I was struggling leads me to think that this attitude of defiance can be more harmful than helpful. If our idea of fighting a disease means we don't take measures to care for ourselves (sitting down when we are tired or weak, accepting helpful devices that will ease life and make us more active, talking to the doctor about something that might be important or involved with our disease, etc.), then perhaps it is time that we redefine how it is we fight back. Depriving ourselves of useful, helpful things is no way to defy our sickness. Depriving ourselves of emotional validity is also not the way to find balance and good emotional health while our physical health wavers.<br />
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Please understand, I am not suggesting that being sick gives us the right and reason to wallow in negative feelings. Allowing ourselves to feel these things is different than submerging ourselves in them. Everything in moderation, even unhappy emotions. They have a place in our healing, in our learning to deal with our changing circumstances. Tears are not an indication of weakness, merely an outward sign of the inward struggle. Are we not entitled to that struggle? Have we not earned the right to shake our fist at whatever disease plagues us? We must allow ourselves these moments of darkness, allow it to seep from us in tears, in words, in clinging tight to the ones we love, so that when we are done we can wipe our eyes, take a deep breath, raise our heads, and feel emptied of those negative things. It makes us able to face the physical struggle once more, helping us to find the strength to keep going.<br />
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So here I sit, having realized I am doing myself no favors by refusing to feel upset that my stretch of minimal pain seems to have come to an end. I am a little angry that I couldn't stay on the upswing. I feel despair at looking at a new year that is going to be a constant rollercoaster ride of ups and downs. But I have only acknowledged that I have these feelings. I haven't yet let them out. It's a tricky business, finding the right trigger, the right moment, the right pressure point where it does me the most good to release it all in a torrent of bitter tears. But it will come, if I let it, and it will cleanse me for a time of all the darkness that I've been suppressing. For now, I share with all of you my thoughts on my own predicament, one that I see others facing as well. I hope it helps someone, somehow.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-81274631057117529492014-08-25T20:11:00.000-07:002014-08-25T20:11:42.562-07:00Am I Handicapped?<span style="font-family: Verdana, sans-serif; font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=TjYjKNGt18k" target="_blank">Lost by Coldplay</a></span><br />
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<span style="font-family: Verdana, sans-serif;">I have hit another Lupus milestone, and as is usual, I am entirely at a loss about how to feel about it. As is the case with almost everything when dealing with Lupus, this has a good side and a bad side. Mixed blessings are becoming the norm.</span><br />
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<span style="font-family: Verdana, sans-serif;">At my last appointment, I took in the form for applying for a handicap placard for the car. I had filled out my half, and was feeling uncertain about how my rheumy would respond. I hadn't asked him about it before, I simply brought it in this time. </span><br />
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<span style="font-family: Verdana, sans-serif;">Something I am learning about him is that he doesn't usually bring things up until I bring them up myself. He clearly felt strongly about using sunscreen, but didn't address it until I asked about it. I imagine he has plenty of experience with balky patients like myself who might not be emotionally ready for the kind of changes that need to be made. Beating a reluctant patient over the head with what he or she needs to change certainly won't help them listen to him when it's vitally important, so I respect his means of dealing with it.</span><br />
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<span style="font-family: Verdana, sans-serif;">Apparently this placard was one of those issues.</span><br />
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<span style="font-family: Verdana, sans-serif;">The moment he saw the form, he practically snatched it out of my hand and immediately began scribbling down the required info. I was hesitant and curious to see what he marked me as... would it be permanent? Sure enough, it was. He didn't talk about it (we were discussing something else while he did this), just treated it as fact and given.</span><br />
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<span style="font-family: Verdana, sans-serif;">I was a little daunted after going home, but I kept the paper where I could see it. I knew that I would procrastinate mailing it in if I allowed myself the room to do so. But it was important to get done. There are several times now when I really could have used a handicap parking spot, when I am creaky or outright painful, but still needed to be involved in going to the store. So I knew it was for my own good to send it in.</span><br />
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<span style="font-family: Verdana, sans-serif;">Thankfully I was successful in getting a grip on myself. I carefully sealed it in an envelope, addressed it properly, and sent it off to the post office with hubby after putting a stamp on it. I then put the whole matter to the back of my mind, because I knew very well I would have to stare it in the face once the placards actually arrived.</span><br />
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<span style="font-family: Verdana, sans-serif;">Today was that day.</span><br />
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<span style="font-family: Verdana, sans-serif;">So here I sit, with the two placards and their accompanying verification letters conspicuously to my left. I have been looking forward to this, truthfully, but also dreading it. It is a much needed help for me, but it also is a label I'm not certain I feel ready for.</span><br />
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<span style="font-family: Verdana, sans-serif;">It seems like, growing up, there were two ways to define someone as handicapped. The first was the obvious wheelchair or prosthetic. The second was to have that license plate or placard that declared that this person got special privileges in the parking lot. Both seemed like very solid, official sorts of ways to define who was and was not handicapped. Someone on crutches? Not necessarily handicapped. A scooter? Same thing. But if they had that placard, that sealed the deal.</span><br />
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<span style="font-family: Verdana, sans-serif;">Am I ready to see myself as handicapped? Disabled? And am I ready to accept that this is a lifelong thing? I'm not really sure I am.</span><br />
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<span style="font-family: Verdana, sans-serif;">It's hard to see one's self in this sort of light. Even if I groan going up and down the stairs... even if I hobble down the grocery store aisle... even if I can predict when the next thunderstorm is going to strike because of stabbing pain in my hip/SI joint... to have these placards is to declare publicly and openly that I have greater physical limitations than the average person, and that those limitations aren't likely to ever go away. Oh, if I'm blessed they will fade, at least for a time, but the threat of pain and disability will never cease.</span><br />
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<span style="font-family: Verdana, sans-serif;">It's one thing to admit privately to myself that this is so. It's another to proclaim it and claim certain privileges as my right. I know it's important to be my own best advocate, but I'm not comfortable putting myself forward in normal situations. This... this is a whole new ball of wax.</span><br />
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<span style="font-family: Verdana, sans-serif;">Once I settle into the idea, once I get used to the concept, and once I start finding how thankful I am for the help it provides, I'll be fine with it all. It will be yet another change that simply becomes part of normal daily life. But right at this moment, I'm reeling from the necessity and enormity of it. Another major thing I have to accept and move ahead with. Another phase of my life left behind forever. </span><br />
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<span style="font-family: Verdana, sans-serif;">Even so, I refuse to lose myself in the midst of all this change. I am still me. Having this placard doesn't change who I am. It merely changes my circumstances, and for the better. Pardon my tears as I continue to remind myself that this is a good, <u>positive</u> thing. I'll get over it in time.</span>Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-56586678830156094472014-08-19T13:22:00.000-07:002014-08-19T13:22:33.033-07:00Hanging On<span style="font-family: Verdana, sans-serif; font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=lYlrJ9EwiYA" target="_blank">Without You by ODESZA</a></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I have recently been thinking about and exploring methods to help me deal with and come to terms with my pain level, to try and help myself overcome it and move on with my life. I've peeked at music therapy (there is very little about using it for pain management, though I subconsciously do this anyway. I might discuss this another time), and today the Lupus Foundation's newsletter had an article about using art therapy. Being artistic, I was intrigued and went to read about it.</span><br />
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<span style="font-family: Verdana, sans-serif;">However, as I began to read, something struck me. It was a sort of outrage, an emotional lashing out at this ridiculous disease. The interviewed artist spoke about how it helps her deal with the pain, reminds her that it will pass, that tomorrow may be better. May be. This was the origin point of my sudden upheaval of frustration and anger.</span><br />
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<span style="font-family: Verdana, sans-serif;">I know Lupus isn't the only disease this is true of, but it is the only one that I'm personally familiar with, so please don't take my statements to be in exclusion of other types of illnesses.</span><br />
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<span style="font-family: Verdana, sans-serif;">It is HORRIBLE that we have to put up with this pain, this stress, this trap of a disease at ALL! It isn't fair that we have to find ways to cope, because we know we'll never escape it. It's terrible that we have to search high and low to find something, <i>anything</i> that will help us to get through each day... each hour... sometimes each minute. </span><br />
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<span style="font-family: Verdana, sans-serif;">How are we expected to endure this? It isn't right, and it isn't okay. It's not! Not at ALL okay! Sometimes, like now, I rail against the calm manner in which we are expected, suggested, coaxed to deal with Lupus. I want to rage against it! I want to scream into the storm that it cannot have me, that I won't let it! </span><br />
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<span style="font-family: Verdana, sans-serif;">I want to turn my mind from it and do art for the sake of art, not because I have roiling emotions bottled up inside because of all Lupus puts me through. I hate that it colors everything. I hate that I have to worry about whether I'll be able to get all these little projects for my son's birthday party done in time. No one else can do these projects. I am the only one who has the art skills to pull them off, the only one with the imagination to see what could be and pursue it. So it is all on me... and stupid Lupus. </span><br />
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<span style="font-family: Verdana, sans-serif;">I have to live with all the secret fears that come with having Lupus. I've been dwelling on posting about those as well, but I haven't because they are unpleasant and tap into the darker parts, the bits I don't want to have to deal with but am forced to anyway.</span><br />
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<span style="font-family: Verdana, sans-serif;">We are approaching the start of the absolute busiest part of our year, which always begins with planning son's birthday and getting him ready to start school. From that point (this point) on, it all piles on, one thing on another, for the next month. There is always more than we plan for, more to deal with than we bargained for. And that's fine, really. Except for this new thing in my life called Lupus. I feel like it is looming over my shoudler, snickering wickedly, waiting for the most difficult and heart-wrenching moment to strike. I'm terrified it will ruin my enjoyment of my son's big day. I'm agonized over the possibility I won't be able to go with on his first day of high school. I'm in knots that it will make it impossible for me to be involved with the various social things coming up that I am expected to attend or host, and that I very much look forward to.</span><br />
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<span style="font-family: Verdana, sans-serif;">I don't want this. I don't want to be torn apart by dread, by worry, by fury at my helplessness against Lupus and what it does to me. That is exactly how I feel right now... completely and utterly helpless. No amount of music therapy or art therapy or even chemo drugs make me any less helpless to the ravages this disease can exact on me. It's all an illusion, a carefully built and reinforced image that it will be okay because of... insert coping mechanism here.</span><br />
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<span style="font-family: Verdana, sans-serif;">This is not a negation of faith. I have faith things will work out. The difficult truth, though, is that I am not guarenteed it will work out like I would like it to. Nor that the journey there will be at all comfortable. It is the smaller things that I am fretting at now, the things I cling to because I am afraid they will be taken from me.</span><br />
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<span style="font-family: Verdana, sans-serif;">What's the solution? The resolution of my fears? I have none. That's what the coping mechanisms are for, of course. Finding ways to pull yourself up by the boot straps and keep on going. It isn't even the mechanisms that I am furious with or resentful of. It is the necessity of them that I resent. It is the undeniable usefulness of them that chafes against me sometimes. But down deep, the real true enemy here is fear. Fear of the unknown, fear of the future, fear of what I can't control, Lupus being primary among the many candidates, with time and chance another.</span><br />
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<span style="font-family: Verdana, sans-serif;">So I will hang on. I will scream into the storm, but I will hang on. I would rather be here, fighting for the privilege of attending (and being able to accomplish) my son's birthday than hiding in some deep, dark place inside myself, waiting for the inevitable to come. I will hang on, and I hope you will hang on too. Sometimes that's all we can do.</span>Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-78727225159077760862014-07-30T15:49:00.000-07:002014-07-30T15:49:55.261-07:00Comfort in Death<span style="font-family: Verdana, sans-serif; font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=qFmkb3m46oY" target="_blank">Isolate by Moby</a></span><br />
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<span style="font-family: Verdana, sans-serif;">Colossians 3:2-3 - <i>"Set your mind on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God."</i></span><br />
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<span style="font-family: Verdana, sans-serif;">It can be a real temptation to focus on my life here, on my daily struggles, on my daily pain. In some ways, it is nearly impossible to <u>not</u> have my thoughts dwell on my daily condition. This is why it is such a strong temptation to put all my effort, worry, and concern in the here and now.</span><br />
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<span style="font-family: Verdana, sans-serif;">However, this verse clearly speaks directly to that temptation of mine. As important and pressing as my pain and suffering may be, they are not of the utmost importance. My spiritual life far surpasses my physical life in urgency and importance. Even beyond this obvious application, I want to point out to myself that this verse says I have already died, a reminder of my death and burial in Christ through baptism, as is spoken of in Romans 6:3-4. I do flinch from dying of Lupus, but in truth the more important death has already happened. I chose my death, that of separating myself from sin, and that death carries so much more impact than any death that Lupus can dole out. </span><br />
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<span style="font-family: Verdana, sans-serif;">Further, this verse is a comfort, for it reassures me that the life I gained through my choice is safe in God's hands. Lupus cannot touch my eternal life, cannot ever take it from me. God holds that essence beyond the reach of pain, outside the realm of earthly fear. I never have to fret or worry that, among the other things Lupus has taken from me, I might lose my eternal comfort as well. God has hidden it away from the contamination of physical disease, and not even my emotional anguish can lessen or taint that final reward. <i>"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us,"</i> Romans 8:18.</span><br />
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<span style="font-family: Verdana, sans-serif;">All God asks of me in return is that I follow his Word, that I obey his commands. I need to stop to consider exactly what extremes I would be willing to go to in order to be certain of comfort and the ending of pain. God has not asked those extremes of me, though he could have. As it says in 1 John 5:3, <i>"For this is the love of God, that we keep his commandments. And his commandments are not burdensome."</i> This is why I unflinchingly and eagerly strive to do his will. How could I not, when his kindness and mercy are so evident to me as I face Lupus?</span>Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-23372954131647568982014-07-11T15:16:00.000-07:002014-07-30T13:52:00.401-07:00Unwrapping Our Gifts<span style="font-family: Verdana, sans-serif; font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=fjm_hBFOW8g" target="_blank">Edge of the Ocean by Ivy</a></span><br />
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<span style="font-family: Verdana, sans-serif;">I was led today on an internet journey that ended up with me reading a blog post about an old dog. It was very sweet and very positive, speaking of leaving behind the bad things in our past and being in the now while looking on to our future. But something he said really struck a chord with me.</span></div>
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<span style="font-family: Verdana, sans-serif;">"Gifts are everywhere, even if they are wrapped in mystery and challenge, in scars and fear." - <a href="http://tomandatticus.blogspot.com/2014/07/there-are-times-when-we-glimpse.html?spref=fb" target="_blank">Tom Ryan</a></span></div>
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<span style="font-family: Verdana, sans-serif;">This is very true. This can be applied to almost anything. But mostly, I find it applies well to how I need to view life through Lupus. I say 'through' Lupus because I do feel like I must look through my condition in order to see how to get on about the things I want to do. Everything is colored by the lens of Lupus. That may sound defeatist in a way, but it really isn't.</span></div>
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<span style="font-family: Verdana, sans-serif;">I've recently come to accept and come to terms with my diagnosis. Took me a while, but I understand now why that is. I needed to prove to myself that I could do this. That while Lupus clearly was going to change my life, it didn't have to change me. Do I do all the same things I used to? Nope. Do I aim for all the same things I used to? Not always. But can I go ahead with my life anyway, despite the changes Lupus has brought? You bet! So I had to live life, find my way through while still making allowances for these changes. I needed to show myself that it wasn't the end of the world, that I could do it. And I have. I may not always LIKE these changes, but I can still cope with them and still be ME.</span></div>
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<span style="font-family: Verdana, sans-serif;">For myself, that is what is at the root of Mr. Ryan's statement. That despite whatever daunting challenges, fearful moments, mysterious obstacles, or scarring events happen... there is still good in the world, in my life, in me! I am still worth something, I am still valid as an individual. In fact, I might have a jump on the world in this aspect, because my life gives me extra reasons to look for and unwrap these hidden gifts, these blessings that are often overlooked or undervalued.</span></div>
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<span style="font-family: Verdana, sans-serif;">It can be so easy to be pulled under by the sheer, daunting weight of unknowns and negatives that come with a Lupus diagnosis. There is a reason Lupus patients are prone to depression. But I say we fight for our happiness. That we look for and treasure these gifts, and share them with each other, to help lift and brighten someone else's day as well. Let's try harder to do that. I'm certain that doing so will ease our hearts and bring smiles to faces that need them.</span></div>
Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-45127305053509524692014-06-12T15:08:00.000-07:002014-06-12T15:08:47.067-07:00A Few Answers<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=FANROVxej50" target="_blank">Count On Me by Mat Kearney</a></span><br />
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It has occurred to me that perhaps it would be of some use to share the other questions I asked my rheumatologist last visit and what his answers were. Please keep in mind, these were answers directed specifically to me by my own doctor. I highly advocate asking your own doctor if you have questions of your own, or want to know what your doctor thinks of these issues. This is meant to be helpful information, not advice on what to or not to do.<br />
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Just as a recap, I'll include my first question to him.<br />
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<b>Q. Should I be concerned about sunlight? To what extent?</b><br />
<b>A. </b>Yes. You should be wearing SPF 70 or higher sunscreen, including under your clothes. You should wear a large, floppy hat anytime you are outside. Avoid going out between 2 and 5 p.m. Stay out of the sunshine as much as you can.<br />
<br />
Relevant questions I did not ask that I will be asking next time:<br />
- Should we tint our car windows, and if so, what percentage? (There is a form I'd need him to fill out if it's above 35%.)<br />
- The sunscreen bottle says to reapply after two hours. Do I really need to put it on under all my clothes every two hours?<br />
- Is it possible to spend all day at a theme park or similar situation? Are there extra precautions I could take?<br />
- Would using a laundry product that adds sun protection to my clothes be a good thing? Would it cut down on how often I would have to do all-over sunscreen?<br />
- How would UPF clothing (50+) affect how often I needed to do all-over sunscreen?<br />
<br />
<br />
<b>Q. Should I be taking vitamin D?</b><br />
<b>A. </b>Usually I only prescribe vitamin D supplements when a patient has a lot of difficulty with exhaustion and <i>(I've forgotten the other problem he cited, sorry!)</i>, as those are the things vitamin D is proven to help with. I don't mind if you take over-the-counter vitmain D if you prefer, though. I just generally don't prescribe it unless there is a need.<br />
<br />
Relevant question I didn't ask:<br />
- Is D2 or D3 better to take?<br />
<br />
<br />
<b>Q. I've been having ear aches lately. Are they related, and should I be worried about them?</b><br />
<b>A. </b>While Lupus can cause inflammation in the ear, if it was related to your Lupus, it would not come and go. It is not likely to be involved with Lupus, so talk to your primary doctor about it.<br />
<br />
<br />
<b>Q. I've realized that recently I've been having migraines. I have read that some consider them related to Lupus, but others don't. Who should I talk to about them?</b><br />
<b>A. </b>While some Lupus patients do have trouble with migraines and it does seem like it may be involved with Lupus, the problem is that it can't be treated or affected by all the typical medicines we treat Lupus with. Because of this, if you are having migraines, talk to your primary doctor about it.<br />
<br />
<br />
<b>Q. With my eye history as well as now having Lupus, should I be seeing an ophthalmologist?</b><br />
<b>A. </b>Yes, at least once a year.<br />
<br />
<br />
<b>Q. How do you, my doctor, define a flare?</b><br />
<b>A. </b><i>(He strugged.) </i>However you define it. Whenever your symptoms get worse. If you think it's a flare, we'll call it a flare.<br />
<br />
Questions I did not ask and probably should:<br />
- How would you define remission?<br />
- What should I do if I'm having a flare? Should I call you?<br />
<br />
<br />
<b>Q. I recently had the stomach flu. What should I do in a situation where I can't keep my medicines down?</b><br />
<b>A. </b>The only medicine you have to make sure to keep down is prednisone. If you can't take the methotrexate after a day or two, just wait until the next week to take it. The rest you can wait and take when you feel better. If you are still throwing up and unable to keep your prednisone down after two days, go to the ER. You could be vomiting due to prednisone withdrawal. Be sure to tell the ER staff that you are prednisone dependent, because they will need to give it to you intravenously.<br />
<br />
<br />
Overall, it was a very informative visit. I went prepared with these questions, and his answers all made sense to me. Forgive me for forgetting exactly what he said about vitamin D. He also highly approved of me keeping a journal of up and down days. I told him that I was having a hard time telling if I was having more up days or down days, and he replied that I was going back and forth a lot. (He used the gesture like scales tipping back and forth between your hands.) It was reassuring to hear him say that, because sometimes I feel like I'm crazy, and that things really aren't as bad as I make them out to be. His candid understanding of my state was a relief.<br />
<br />
I highly recommend taking a pre-prepared list of questions with you to your appointments, especially if you are going months between them. Write them down as you think of them if you can, as I find that all my questions disappear the day of the appointment. (I get a little anxious and nervous.) Make sure your doctor knows you have questions that you want answered, so that you don't end up throwing them out as the doctor is heading out the door. The answers won't be as complete and clear to you if you surprise your doctor in the hallway with them! I also suggest writing down the answers if they are involved, have medicine/condition names that will be hard to remember, or if you usually find it difficult to recall what the doctor said later on.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-46430272588844815442014-05-27T13:45:00.000-07:002014-05-27T13:45:50.395-07:00Something New<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=BUIzq-HcNPA" target="_blank">Hayling by FC Kahuna</a></span><br />
<br />
It seems my life is full of new things lately. I'm adjusting to not going out into the sunlight without major prep beforehand. I did manage to go to a pool party yesterday, though of course I did not swim. Still, I refused to let my limitations dissuade me from participating in the social event. I gooped up with sunscreen like I'm supposed to, wore my nice new UPF 50 hat, and spent an hour and half on a shaded porch beside the pool. After that time, I went indoors and spent the rest of the time playing games. It's an odd adjustment, but one I'm determined to make.<br />
<br />
But more notably, I am trying something completely new. I have been writing, in one form or another, pretty much all my life. It is something that comes naturally to me, though I do not profess to be any sort of expert at it. Even so, I do enjoy it, and have a certain amount of proficiency as well. An online friend asked me recently if I was doing anything with my time. I had to answer honestly that no, I wasn't. She pointed me to a site that one of her friends uses to make a little extra money on the side. So I went to take a look.<br />
<br />
Something to keep in mind about me is that I have never been a career woman. Ever. I have had a total of four jobs in my life, three of those pre-marriage. I have tended a snow cone stand, briefly was a barista, and had a few years of being a yard duty on an elementary school playground. The more recent job was to babysit children while their mothers worked. I am quite solidly a housewife and stay-at-home-mom.<br />
<br />
So when faced with this site that links freelancers with clients who have jobs they want done, I was both interested and intimidated. List my previous jobs? Somehow I doubt my dispensing snow cones at the age of sixteen was going to be of any help in getting writing jobs. Oh yes, and how about my shcooling? Well, I did at least graduate high school... and went to junior college for a bit. But nothing much there to show for it, so... ?! Man did I feel overwhelmed.<br />
<br />
But I plugged on. Despite how foolish I felt setting up my profile, I did it anyway. I was supposed to take some skill tests to prove I was capable. Imagine my mortification upon recieving a "below average" score on my spelling test! It doesn't much help, though, that I tend to spell with my fingers... meaning that I prefer to type or write out a word to assess if it is spelled properly. Guess I've lost my touch at telling by sight, but then again, my sight is really not very good at all. It was yet another blow to my confidence.<br />
<br />
I was so uncertain of myself that I had a long talk with hubby about it. He is a wonderful and very supportive man, but also isn't afraid to tell me when he disagrees with me. (I can't tell you how reassuring and helpful that is!) I knew already that the core of my problem was self-confidence. I lack it. I have no faith in myself or my abilities when pressed. However, I felt instinctively that I was capable of doing at least <i>some</i> of these writing jobs. I just was too scared of failure to jump in. He prodded me to go ahead and try, to brush up on my skills and do it anyway. I agreed, but was frankly terrified.<br />
<br />
Timid I might be, but I also am stubborn. So once I made up my mind to make an honest try at being a freelance writer, I gritted my teeth and got more serious about it. I took a couple more skills tests, did well at them, and scanned the jobs. Lo and behold, I finally found one I was pretty sure I was capable of. Something simple and straightforward. It was to create 100 inspirational sayings. So I took a very deep breath, held it, and plunged in.<br />
<br />
I was proud of my little cover letter, because I managed to convince myself <i>not</i> to run myself down, ask for allowances, or downplay my skills. I kept it firm, positive, and calm, at least on the written page. In real life, I was a twitching, squirrely mess. This became mixed with a surge of excitement when I was contacted in return, and carried on a text interview. It took another surge of courage to invent a sample saying so the client could 'judge my style'. (It took another check with hubby that what I came up with was worthy of sending.. I really should have believed in myself to begin with, but it's sooo haaard!)<br />
<br />
Anyway, it resulted in my being asked to do the job. Which I have, in three days. No idea if that's reasonable or not, but guess what? I'm doing this for myself, not on someone else's time, unless I agree to do so. I have finished it and turned it in. There's just one problem now... I have no idea whether I'll really get paid or not. It's entirely possible, due to how this was set up, that she can blow me off even though she received the finished project. But oh well, such is life. It was for a measly fifteen bucks. Besides that, for me the biggest up-side to all this is that <i>I did it!</i> Nerves and all, I am overcoming and making something new of myself. That, I think, is worth celebrating.<br />
<br />
Now if only I could find another job to apply for that I feel comfortable with!Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-37109460344443458632014-05-16T12:49:00.000-07:002014-05-16T12:49:07.733-07:00Drowning<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=IUGzY-ihqWc" target="_blank">Eyes On Fire (Zeds Dead Remix) by Blue Foundation</a></span><br />
<br />
Today was my appointment with my rheumy, my first since my diagnosis. I felt and still feel a great deal of anxiety surrounding the appointment, even now that I am home. Upon arriving home, swimming in thoughts, ideas, and feelings, something caught my gaze. A dried up sprig of jasmine flowers, floating in a cup of water too big for the tiny sprig. Staring at it, I realized that I feel just like that poor flower. I feel like I'm drowning.<br />
<br />
I had a lot of questions for my rheumy this time. Questions I've been saving up, that never seemed important enough or relevant enough to ask before. Questions that I had felt like only a <u style="font-style: italic;">real</u><i>, </i><u style="font-style: italic;">true</u> Lupus patient could ask, or should ask. And up until two months ago, I wasn't <u style="font-style: italic;">that.</u> But now I am. So I worked up my nerve to make a list of "Should I be concerned about _______?" questions.<br />
<br />
The first one of those questions ended up being the answer that surprised me the most, and has left me kinda reeling. It doesn't sound like that big a deal at first glance. "Should I be concerned about sunlight?" His immediate answer was an unequivocal, "Yes." It was the extent to which I needed to be concerned that has be struggling to breathe.<br />
<br />
To the average person, avoiding sunlight doesn't sound like that difficult or daunting a prospect. After all, I already stay inside most of the day, for most of the week. Simple, right? Oh, how wrong that is.<br />
<br />
Believe it or not, this means some really dramatic changes. I had asked him how drastic should my measures get to avoid sunlight? His answer included every one of the measures I've read about. Wear 50+ SPF sunscreen on all of my body under my clothes. Wear a wide-brimmed floppy hat. Don't go out in the afternoons, especially in the summer. Sounds simple, but is far from it.<br />
<br />
Perhaps I'm just feeling overly emotional over this, but for once I'm finding myself not wanting to do what needs doing for this. Really, I seriously don't want to think about, much less actually follow through with the kind of changes this requires. Let me lay some of them out for you.<br />
<br />
I shouldn't check the mail until after dark. I like to check the mail. I don't go outside a lot, so checking the mail is a nice, brief way to take in the outdoors with minimal exertion and pain. During the summer, it won't get dark until after nine p.m. Which means I won't be checking the mail at all.<br />
<br />
I shouldn't go with hubby to pick up our son from school. It falls into that period of time when I really shouldn't be outside. We have minimal tinting on our car windows that seems to block quite a lot of the UV rays, but I know that probably isn't good enough. This really bothers me. Going to pick up my son is one of the ways I choose to interact with him, participate in his life. The (kinda?) good news on this is that next year he goes to high school, and will be getting himself to and from school. So soon I'd be missing out on it anyway. Is it worth it to ignore my doctor's advice and keep going to pick him up in the afternoons for what little is left of the school year? I honestly don't know.<br />
<br />
Sundays will always be a problem issue when it comes to this sort of stuff. My husband is a preacher. I would devotedly go to services every Sunday anyway, for both services, regardless of whether he was the preacher or not. Due to these circumstances, it means Sundays are a great drain on me, in many ways. I exert myself more, expending much more energy that day than any other. I spend more time in the car that day than any other day, save those when we run around doing errands. And now? Now I am supposed to wear sunscreen and a floppy hat. I'm... at a complete loss on how to react there.<br />
<br />
Does this mean I have to go to church services smelling like I've been at the pool? I have to research whether there are scentless sunscreens that come strong enough. Will my straw floppy hat be enough? Probably not. Which means I have to go looking for hats. I dislike hats. They make my head and body hot, they often are too tight on my head, and they restrict what little vision I have in the first place, making me feel faintly claustrophobic. More money to spend that I don't think we have.<br />
<br />
I don't like thinking about having to restrict how much I go outside. I don't like to think about having to slather my entire body with sunscreen anytime I want to go somewhere. I don't like to think about wearing hats everywhere I go. I don't like having to pick and choose what avenues of protection I will take because of money limits. I don't like to think of taking <i>more</i> drugs to try and get this all under control, but yet still having to avoid the sun. I live in one of the sunniest, hottest places on earth. Avoiding the sun comes naturally here, but not to this extent.<br />
<br />
I so <i>very much</i> feel like my poor little dried-up, drowning flower. And I, right at this moment, feel equally doomed. Intellectually I know that yes, these measures are worth doing, that they give me hope of not dying, that everything working in concert means I hopefully should live a normal lifespan. But not a normal life. It will never be any healthy person's version of normal. Not now, anyway. It seems like I have hit another point of mourning. So pardon my melancholy, I'll just be over here for a little bit, drowning in it all.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-75790912948765723992014-05-15T14:29:00.000-07:002014-05-15T14:29:25.384-07:00Transitional Thoughts<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=ClAqTUAR4t4" target="_blank">Tectonic Shift by Delerium</a></span><br />
<b><i><br /></i></b>
<b><i>I have discovered something called <a href="http://patientsforamoment.blogspot.com/" target="_blank">Patients For A Moment</a> that I am going to try and participate in. This month's topic is: How do you cope with transitions?</i></b><br />
<b><i><br /></i></b>
I have been dwelling on the idea of transitions for several days now, and have found myself oddly baffled by the idea. It isn't that I don't understand the word, nor is it that I do not grasp the idea. After a round with a 24 hour flu, and preparing for my next rheumy appointment tomorrow, I think I have finally settled on why I find it so difficult to write about transitions in my life, and why I can't figure out how to express myself about them.<br />
<br />
Perhaps it is because I am so new to my diagnosis, but to me, every day is a transition. Granted, there are bigger ones than the average, everyday stuff, but that's just it... they are simply bigger rather than different. I suppose my biggest transition lately was the diagnosis itself. Having my suspicions proven true was more transition than I cared to have, to be honest. However, even the normal daily challenge of figuring out whether I can go to the store, or to my son's orchestra concert, or just to the mailbox, are more than I care to handle too. It seems like most of my transitions lately have been rather unpleasant.<br />
<br />
But that still doesn't really answer the question, does it? For all my wrangling at the idea, I have managed to avoid the question itself. This is probably because the answer is as unpredictable as the transitions themselves. Let me explain a little further.<br />
<br />
I have always been an emotional person. I empathize easily with other people. I generally find it very easy to express how I feel at any given moment. Because of this, I had always figured I would be an emotional volcano if anything major ever went wrong. Nine years ago today, I found out just exactly how I would respond in a crisis. Our house caught fire while we were gone to church services. We came home to fire trucks and one very ruined home.<br />
<br />
My first frantic thought was how I had to get my son away from there, out of sight of our burned house, away from the potential emotional trauma. Thereafter I settled into a detached frame of mind. I dealt with what needed dealing with, and felt baffled and irritated by the strongly emotional reactions of my friends, who wept for my loss. At the time I didn't notice how cold I was inside. Later on I figured it was due to shock. I had to remind myself it was okay to cry, that it was alright to be upset. I had walled it all away, tried to keep it separate from myself. This reaction surprised me.<br />
<br />
I've learned since that this is apparently how I handle things that are too big for me to functionally handle. After I was told by my rheumy two months ago that it was indeed Lupus, I expected to explode. I expected a hysterical bout of tears. It never came. I wept a few shocked tears on the way home, and a few more would leak out over the next few days, but beyond that, nothing.<br />
<br />
It is possible this careful calmness is good for me, as it leaves me free to deal with the changing situation. It allows me to deal with things one small item at a time. It's been a process, and still is. How does one adjust mentally and emotionally to something so vastly life-altering <i>and</i> ever-changing? There is no rhythm to fall into, no routine to get used to, no solid new state of life to pace myself with. It adds a whole new layer of unpredictability to life that is one great, giant transition.<br />
<br />
Now if only I could feel as calm about the little transitions, and less aggravated by their randomness!Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-83904870917358528262014-05-10T11:54:00.000-07:002014-05-10T11:54:19.688-07:00Up And Down<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=omhNnvX3Sx0" target="_blank">Changes by Yes</a></span><br />
<br />
I'm finding it difficult to have any sort of standard by which to measure my good days and bad days. It sounds like it should be a no-brainer, I know. However, Lupus is odd in that it nearly forces you into living in the moment. Sure, there's a lot of positive in that, but it makes gauging progress as a whole fairly impossible. For example, today is going pretty well thus far. I have very close to no pain, no stiffness, no swollen feet, no flushed face. All is well, and it feels like all has been well and will be well, which is patently untrue.<br />
<br />
Perhaps this is what leads some to go off their meds sometimes? It isn't something I've been able to relate to, as I am desperate to achieve and retain a pain-free existence. The idea of stopping my meds because I feel so much better seems counter-intuitive. However, when looked at with the perspective of being "in the now," it makes a little more sense.<br />
<br />
I have my suspicions that my symptoms are worsening, but I have no proof, nothing to point my finger at and say, "Look, there is why I feel I am worse!" So, to remedy this, I intend to keep a sort of journal. It won't be anything fancy or complicated. It'll just be a day planner with simple notations. Each day will be assigned an up arrow or a down arrow. If I can do everything I want to do that day without pain, then it gets an up arrow. Anything else gets a down arrow. I will note if the day was busy, as that is quite relevant to the success or failure of my meds. I will also note the kind of problem I had that day in the simplest term possible.<br />
<br />
The real issue here is how varied my days can be. In a single day I can go from energetic, painless, and happy.... then a few hours later end up feeling feverish, weak, exhausted, and pain-wracked. Up and down, down and up. Some days are steadily in between. Some are steadily bad or steadily good. I never know how the next day will be, or even the next hour. It's highly frustrating sometimes, and makes planning for anything problematic. But it's something I can't change about Lupus. <br />
<br />
There is a lot I'm having to accept about having this disease, and very little of it is anything I care to be content with. That being said, I don't have much choice. I might as well make the best I can of these changes.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0tag:blogger.com,1999:blog-2358291883541895033.post-90695644525704530262014-04-26T20:18:00.000-07:002016-04-20T14:09:39.629-07:00Losing It<span style="font-size: x-small;">Post Soundtrack: <a href="https://www.youtube.com/watch?v=5Ttxso_Aedg" target="_blank">Beyond This Moment by Patrick O'Hearn</a></span><br />
<br />
There are many small ways we define ourselves. Even those of us who do not put our self-worth into outward things can be affected by the loss of significant details of our physical appearance. For me, it was, and is, I suppose, my hair. Perhaps it was a touch of vanity, but I tended to think of myself as having long hair. It was no great glory, nothing that anyone else but my husband and perhaps my mother would have admired, but it was mine. It was me.<br />
<br />
Lupus changes everything.<br />
<br />
Hair loss was one of the very first symptoms I noticed so long ago. When your hair is to your waist, you notice when more of it comes out than is normal, I can tell you for certain. But I came to accept it. For years, the amount of hair I lost in the shower stayed the same. But when things started getting worse, so did the hair loss. I was starting to find it on my pillow when I laid down every night. It accumulated in corners of the bathroom floor.<br />
<br />
And then I started taking medicines like prednisone and methotrexate.<br />
<br />
Needless to say, it got worse. I could run my fingers through my hair and come away with five or six hairs caught in my open fingers. If I kept finger-combing, I'd get a handful eventually. When I brushed my long, long hair, I would end up with a swoop of hair trailing from my brush. You could now trace my movements by looking for my hair, for it was sure to be anywhere I had gone.<br />
<br />
It was all so demeaning. It was undeniably distressing. This part of myself was betraying me, leaving me in the lurch, quite literally. It hurt, like an emotional wound from someone's hurtful words... but there was no one to blame. There was only Lupus to be angry at, and that was rather a fruitless use of emotional energy.<br />
<br />
And then I began to notice a thinning patch, right where my long hair parted.<br />
<br />
That really was the last straw. Though I defined myself by my long hair, it was time to brave a change. At first, as I considered getting my hair cut, it only added to the sense of shame and dishonor of having to take such drastic measures. But I had the reassurance of being reasonably certain that, when cut short, my very straight hair was going to develop a wave. My mother had cut her hair very short, and found a gentle curl as a result. I had hopes for the same, and such hope (for one who had always wished for wavy hair) was one of the few things that kept me from despair.<br />
<br />
It was cut shorter than I'd had it since being a toddler. It ended up at my jawline, but wonderfully layered and, tada, CURLY! Well, softly curly. No real curls, but definite body and ripples. It felt good!<br />
<br />
It took some time to stop seeing myself as woman-with-long-hair. It took some time to adjust to feeling it tickle my neck. But I was pleased with it, overall.<br />
<br />
What I find most strange about it all, though, is the sense of self-definition. I now prefer to define myself by my perky, curly do, rather than what it looks like when I go one too many months without getting it cut again. I have adjusted my mental image of myself to this new norm. It doesn't prevent the hair from continuing to fall out, of course, but it does hel me feel some better about it. Thinning spots can be covered with the new-found body my shortened hair possesses. I don't heavily brush my hair anymore (ruins the curls), so I don't get swaths of evidence in my brush. I do still find it on my pillow, and all over the bathroom floor, and in the shower drain, and on my clothes... but it is not so impactful now, being shorter and less noticeable.<br />
<br />
So my sense of self has been rescued, a demoralizing situation turned around. Part of me wonders what will be next. Currently I am considering getting a handicapped placard for our car. Yup, you bet, that's making me feel very self-conscious and demoralized. However, I am coming to realize that it probably is a good idea, and would help me take better care of myself. One hurdle down, another to conquer.<br />
<br />
It's astonishing how illness can force not just your life, but how you think of yourself, inside and out, to change so dramatically. No wonder I've heard so many facing Lupus to feel they are losing themselves to the disease. I'm doing my best to simply go with the flow, and learn new ways to be the new me.Talenciahttp://www.blogger.com/profile/06607205440669753804noreply@blogger.com0