Post Soundtrack: Lost by Coldplay
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.
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.
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.
Apparently this placard was one of those issues.
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.
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.
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.
Today was that day.
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.
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.
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.
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.
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.
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.
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, positive thing. I'll get over it in time.
Monday, August 25, 2014
Tuesday, August 19, 2014
Hanging On
Post Soundtrack: Without You by ODESZA
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.
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.
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.
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, anything that will help us to get through each day... each hour... sometimes each minute.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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, anything that will help us to get through each day... each hour... sometimes each minute.
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!
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.
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.
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.
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.
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.
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.
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.
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