My mother used to tell me that if you can’t anything nice about something or someone, you shouldn’t say anything at all. My father used to say that if you can’t behave properly in public, you shouldn’t be in public until you get a handle on your behavior.
My friends told me that there is no reason to be angry or to bounce off the walls. Beloved told me that it’s okay to be angry and to bounce off the walls when you have to deal with the ghosts of a dream from way back. He would also tell me that the pain sort of disappears and everything is kind of like a scene rather than the whole earth shattering life.
The thing is, I can’t always say nice things about lupus. Oh I’ve tried. And I’ve tried to found the positives that lupus has brought into my life, but sometimes I just can’t find the nice words. And I can’t behave properly because I’m tired of giving so much of myself or my dreams away.
Sometimes all I can do is look for the freedom and the space to be angry and loved. To bounce off the walls and to settle into a comfortable spot. And sometimes that seems impossible to find. Because friends don’t want to see you hurt or upset all the time. They want you happy and full of life.
No one wants to hear the tears of lost dreams, or the ghost of the girl I once was. Except Beloved. He listens. Sometimes he bounces off the walls with me. Sometimes he tilts at the windmills and other times he just finds a place to sink down into and hold me while I try to forget about that ghost of a girl.
I know it’s a blessing to be able to work as a lupus patient. I know that the mere fact I can work, bring in money etc. means I’m not trapped in a cycle of minimal finances.
I also know that being able to work means I get to have a taste of the freedom that comes from normal life. You know, just doing ordinary things. And yes there is a price to pay for that, in terms of being horribly exhausted by the end of the day. Or you know being closer to sick people while taking medication like chemo. But at least it is a form of freedom.
What I’ve discovered over the years, is that when you can work and other people in your support group cannot, they do not consider how sick you may be. They resent you for being able to work. They perceive your illness to be less severe. They tell you that you aren’t a poster of what it’s like to live with lupus.
I’ve had people tell me that I don’t really know what it’s like to have lupus. I’ve had other people tell me that what I have cannot possibly be lupus because lupus is so debilitating. And that’s within a group of people who are supposed to be supportive.
What these people do not understand is that while I am blessed to be able to work, it comes at a very steep cost too. But of course, as they say, I’ve made that choice so therefore the price must not be too steep.
When I was first diagnosed, I heard horror stories about how shortly after being diagnosed, death was the next step. But before you died, you found yourself trapped in dreadful poverty. And I vowed to prove this all wrong. So I struggled through to a PhD. I struggled to work and be taken seriously in my field. I struggled to make sure my bills were paid and a safety net was there because insurance is fleeting.
And I thought, well surely other lupus patients would understand the fears and the need to keep going. I was wrong. But that’s okay. Not every lupus patient will work, some will at a very high cost. And I will be there for them. I will applaud their struggles and acknowledge the fine line we all walk.
Beloved is the kind of man who will offer you tea if you’ve had a bad day. Need to rant or rave? He has a tea for that. Need something to calm down or help you rest? There is a tea for that too. He has different teas for serious chat, funny chat or just curling up with a good book.
He does not have a tea to hear or cure lupus. Teas for inflammation? Yes. Teas to settle a queasy feelings? Yep. But nothing to cure this disease.
He has, however, a ton of patience and time to research. So when a well-meaning, good-hearted friend told him of a tea that will cure me of my lupus, he had to check it out. Not that he believed it would be a cure, but if it could help with a flare, why not give it a try? So research he did.
What he discovered was the tea could only be purchased from a small group of people, because the tea is green in remote places, wth all the extras added to it being “special”. This also means the tea is expensive. And untested. Only word of mouth as a validation that it works. He decided it was more a placebo with mild anti-inflammatory ingredients and thus not worth it.
So researched all the cures for lupus he could find. From diet to lotions, from pills to a magical elixir. Special diets, eating at certain times, eliminating items and such. And of course it’s all word of mouth because if there was a cure, we’d know about it. What do all these have that allows them to exist and for people to continue to promote them as a cure? Hope. They are all signs of hope. Something to grab ahold of and anchor yourself to as you hope for a fix to a horrible, chronic illness. But they are empty hope. It’s like anchoring yourself with a floatations device. It just doesn’t work. But you want to hope, you want something to reach for and grasp, so you do. Because you need to cross all the to in your journey. Just don’t fall for a healing tea.
I was a bit of a lazy student through school. Well until my Phd. But for the majority of my education, I never really applied myself to lesson. I attended classes, half-listened to teachers and had no problem with the readings and assignments or tests. I was fortunate.
And then I got lupus. And suddenly I couldn’t be a lazy student any more. Required reading? Not all that easy. Assignments and tests? Yeah it is called living and managing lupus as best I can. No extra credit here.
And the lessons are all day long, every day. No breaks. Not exactly what Im used to. But then you don’t always get to choose.
Apparently having a chronic illness like luous means you are required to be engaged, actively participating in the lessons. Don’t worry, they aren’t afraid to repeat the lesson until you get it. And even then, sometimes after you have mastered the matieral, they just make you do the lesson again. Of course like any good teacher, lupus never presents the lessons the same way each time. Things get switched up and such.
None of this is what I wanted, but it has taught me to be a better student, to be more appreciative of things. And it’s kept me humble in more ways than I needed. So I guess there is that lesson to.
When the blood sucking bugs come out, it’s a wonderfully awful time for me. I don’t know many people who enjoy a blood sucking bug, and I’m really not a fan of them. However I do enjoy the fact that when said bug lands on me and decides to sample my blood, the bug is in for a nasty surprise.
You see having lupus means taking some pretty toxic drugs. The kind of drugs that alter your blood. The type,of drugs that means medical staff take extra precautions when drawing your blood. Yeah that kind of blood. So when the blood sucking bug takes my blood, well the bug is getting a toxic meal. And I assume, but cannot prove, that this really doesn’t bode well for the bug.
I envision the bug exploding in mid air thanks to that toxic mix flowing through its body. Again I have no proof, but a girl can hope based on the imagination. Listen when you spend as much time as I do getting drugs like chemo, you have plenty of time to imagine things.
I like to think that this is part of my public service, being their last meal and all. And that’s just one of the cool things I’ve found with lupus, even if it’s only part of my imgaination.
Some people just rely on getting by with passion, trust and luck. Some people rely on getting by with support, help and hard work. And some people, well, some people rely on trust.
Prior to become very ill with lupus, I had a strange mix of things to get my through in this life. I relied on hard work, education, intellect and determination. It worked. Well sort of. Because you can only go so far when traveling against great resistance.
After lupus, well, I learned that lupus doesn’t care what your GPA was. Lupus doesn’t care what school you went to or what level of education you ended up with. Lupus doesn’t care how stubborn you are, how hard you work or how passionate you are. I know because these were the things that I had always prided myself on working with and having.
But as they say, pride goes before the fall and for me, lupus was the fall. But it isn’t all dreadful. I still have a career, still have my intellect, even if on certain days it’s like plumbing the depths of the oceans just find it. I’m still determined and passionate. But I’ve come to learn to trust people that I care about in my life. I’ve come to learn to ask for help, and even bigger for me, to accept help.
Lupus is, in some ways, a great equalizer. Lupus can, in some ways, put your life into perspective in a way you never considered. Lupus can teach you lessons you’d never learn in any school, no matter your GPA or your intelligence. Lupus can, however, teach you how to let go of things, hang on to things and find where your real priorities are.
Sometimes we have to do things we don’t like to do. One of the things I don’t like doing happens to be blood draws. Oh sure I don’t actually do them. I simply sit in a chair and let someone else dig into my veins and draw my precious blood out of my body.
Now I’m not the smartest person, however my understanding is that blood sort of needs to be in my body.i mean that’s where it belongs. And yes I understand the amount they take in a draw is miniscule. However when you are getting diagnosed with lupus it seems like they almost drain your body of all e precious blood it has. Don’t worry. It just seems that way. However don’t think once you have been diagnosed that the blood letting is done.
You see having lupus means taking medications. Having lupus means blood tests, routine in nature. Having lupus means giving up bits and pieces of yourself, such as your blood, for your overall health.
And I hate blood draws. I always have. And I have them on a regular basis these days. So I can dislike them, but I still get the, done. And for the record, I’m blessed to have amazing people who are able to deal with my crappy veins and draw the blood in a not bad way.