The Lupus Question I Cannot Answer 

I was asked today, that’s day of Lupus Awareness Month, if I saw myself as a warrior or survivor of this illness.  It’s an interesting question, and one that is not easily answered.  Part of the issue is how I interpret the words and the other part is how I see myself in conjunction to those words.  Let’s breakdown for a moment.

Warriors are strong, battle prepared individuals who are typically trained for their fight.  If only I had been trained for the life one lives with lupus.  I guess it’s fair to say I have been trained, and still am in training, as it is on-the-job learning for the most part.  Keep in mind what works for one person may not work for anther due to the individualized nature of the disease.  So to me warrior doesn’t fit.  It also doesn’t fit because I’ve learned that fighting against lupus is not going to help matters.  I needed to learn to live with the disease to get ahead.

Survivors are people who have made it through something.  As in there has been an ordeal with an absolute end.  Again this is troubling too.  Why you ask ever so politely.  The thing is I am still living with lupus.  As in it isn’t over yet.  So no end, just a continuation.  To take it to the nth degree, as current treatment goes, I will most likely die from a complication brought on as a subset of lupus.  So I don’t see that as being a survivor.  

I am a lupus patient.  I am a woman who lives with lupus.  I am an employee with lupus.  The list goes on.  But I am also so much more than anything …with lupus.  There are, of course, whole aspects of me that do not need to have lupus.  So I struggle with how to identify myself and my life with lupus.  In fact many will point out that I do tend to post more about lupus during May and not much during the rest of the time.  This is somewhat deliberate as an individual I am very clear that I am not my lupus.  The drawback is I fail to advocate effectively.  So I’m not sure how to answer the question.  And I’m okay with that.

Why Lupus Is Like Sloshed Water 

While I was out and about today, I saw a toddler with a cup of water.  As he carried his cup of water, it sloshed around and soemtimes out of the cup, spilling.  He kept walking to his destination,  spilling as he went and by the time he sat down, he had less than half of the amount when I first started watching him.  He seemed surprised and then angry that the water level was so low.  Thankfully his dad was near by and able to fill the glass up again so the crying period was brief.

This child wth his spilling of water got me to thinking of my relationship with lupus.  Let’s say lupus is the glass I have to carry.  And the water is my energy and concentration levels.  Naturally as I move about, I deplete my energy level a bit, just as the sloshing resulted in some lost water. 

In theory I am aware of this, however as my energy levels deplete my ability to concentrate and problem solve also diminish.  So sometimes when I get to where I am going with my glass, I have to thinking about why I am so tired or unable to do something.  I know it sounds illy.  But when you work hard at just getting from point A to Point B, you can’t always connect the dots.  It’s like the water on the ground has already dried up.  

This way of thinking or not thinking means that sometimes I’m like that car wreck you can see a mile away, but you still are surprised when you get near it.  I will be shocked that after doing something. Am tired, or even more common, that a flare is ensuing.  I know I am an adult.  I know I have been living with this illness for a while, but sometimes I still get surprised by it.  

Or maybe the truth is that what I’m most surprised by is that I don’t have any means of getting my glass easily refilled.  There is no handy dad like figure with a large jug of water to come and just refill what was spilled.  So they surprised, the frustration and angry periods can be so much more.  And double that for the almost in tears, or actual crying phase.

Wrapping Up

This time of year is always a bit weird for me.  No not because of the weather or such.  Mostly it is because as the month of May wraps up, so does the majority of the stuff around lupus awareness.  I mean it is fortunate to have a month to draw awareness to this misunderstood and baffling chronic illness.  But the reality is, for me and everyone else who has the disease, it doesn’t wrap up when the awareness campaigns do.

Lupus is a 24/7 kind of chronic illness.  It can even be a 365 days a year or multiple year flare.  And it can be hard to see that as the attention floats away, some times people forget that you still struggle with it.  I’m not complaining about it not being a every day, full day awareness deal.  That would be too much.

So it’s a bit weird.  I watch other illnesses step into the spotlight of their awareness campaigns.  And I wonder if they also don’t go through this weird moment.

So if you should notice me still hobbling or hiding from the sun, don’t worry, it’s lupus.  Just because the awareness spotlight will fade away, except for those who continue to draw attention and advocate around the illness, lupus and all the oddities that come with it, are still ever present with me.

Luving Passionately With Lupus

Now and then I will meet someone who is doing something that they love so much, the person’s passion becomes an inspiration.  Today, while having labs after labs drawn, I had a lovely visit with a gentleman who was also getting draws.  We talked about what we did, what types of tests we were having and so on.  As he talked about his job, his entire face lit up and his energy was incredible.  I wish I could have bottled that all up to give to him for those days when energy is flagging and he isn’t feeling so brilliant.

He’s a librarian and as he talked about books and introducing people to new ideas and worlds I was just lost in his passion.  The fact he wasn’t letting his debilitating chronic illness get in the way of pursing his passion and now working in that field was just amazing.

I sort of admired him being able to have his first passion.  Although if I’m honest, I ultimately had mine too, which was school.  The career change just meant more school!  

All too often when I am talking other lupus patients, I discover that they have become so lost in all the medical appointments and tests, plus the side effects of medication, that they kind of give up on their passions and interests.  I get it.  I really do.  It’s hard to focus on stuff when you feel like death twice warmed over after having been hit by a bus.  

But if you can still find things to be passionate about, things that interest you, you can go from going through the motions of life while being focused on your illness to living life.  Sure it’s in bits and spurts, but it’s incredible all the same.  Now if only we can bottle this stuff up for the days when it’s a bit harder to finder passion or energy.

Love And Lupus

I was listening to Beloved reassure one of his sisters that he was perfectly fine with things the way they are.  A little further into the conversation I became aware of the fact that what his sister was concerned about him being in love with someone who has “an unfortunately horribly chronic condition that won’t ever get better”.  

Sure he didn’t set out to love someone with lupus, but I also didn’t set out to have lupus.  Lupus just sort of happened to me the same way we just sort of fell in love with each other.  And just like being in love with someone calls for compromise and adjustments, that’s life with lupus too.  

But it did give me pause, this conversation he was having.  I mean I know he’s giving up a lot to cope with my health ups and downs.  He’s cancelled outings and had to alter travel plans due to my lupus flares.  He has carried me when I’ve overdone things.  He has held my hand at the hospital and read to me when I couldn’t hold my book.  

So I wonder how there is an upside for him in all of this.  But there is…and apparently it just happens to be me.  

How do I know you may wonder.  Because I asked him.  And he told me.  He actually said it was no different than when I was there for him with his health issue.  Except it is.  Because his condition was cured.  Mine is just sort of kept in some form of check or balance.

He also said no one is perfect and lupus is just a minor imperfection in my life.

How Do You Brunch

Who doesn’t want to get together with good friends for brunch? Exactly. So naturally when dear friends invited us out for brunch earlier, we said yes. Thankfully these are really good friends who know that with lupus, yes doesn’t always mean I will be there or that plans won’t be slightly altered.

Beloved and I have a plan around these types of situations. If I need more rest because I didn’t get enough thanks to pain etc., he may go to brunch before me. He will let our friends know I’m on my way and that they should just get on with the brunch and the visit. It lets me rest a little longer, get all my meds and if I don’t feel like eating, it isn’t a huge deal. If I am hungry I will grab something before I head over.

Other times, Beloved will go alone and let our friends know that I wasn’t up to it and he will stay and have brunch with them. It’s not a big deal and we’ve gotten use to this as well.

At other times, I will just join Beloved and we will head to brunch at the appointed time. Again, if we are with really good friends, they will know and have experienced all the different variants of how we do brunch. And its not a big deal.

So we went to brunch together because I felt pretty good. We visited and ate and enjoyed ourselves and I tried to ignore the nagging aches I had. Those are pretty daily for me anyway. I had a wonder time and it was worth the energy and the pain.

Now whether I am able to do tapas tomorrow will be another story. But I will try, because my friends are worth it and, well, lupus doesn’t dictate my life.

Lupus Ain’t Pretty

Society, loved ones, friends and popular culture can all make a girl feel anything but pretty. I think that’s common for most females, certainly in western culture. It could even be the same for females in eastern society too. Heck it could be a fair statement for every human for all I know.

Lupus definitely makes me feel unattractive. I know that I have received some compliments on my rosy glow, which happens to be on the days when my makeup does a somewhat decent job of hiding a very strong rash. If I were to take my makeup off, I’m sure those compliments would have been something other than a compliment.

Swollen joints, purple fingers, and odd locomotion also can come with the lupus package. Heck some people gain weight, others lose it. There is hair loss and sores to consider as well.

Let’s face it, lupus isn’t a pretty disease. And it’s easy to feel anything but pretty or glamorous when you have it. I know because I fight with that too. But here’s the thing friends, I know that’s just the negative side of lupus talking to me. I know I’m not hideous to look at. I will never win a scariest Halloween costume when I go out without my makeup. It may feel that way, but it’s just lupus being ugly.

And that’s the thing, lupus has ugly behaviors, but you are still a fabulous person. You are still wonderful, beautiful, and pretty, despite lupus.

A Lupus Letter To Me 

One of my specialists likes to start my appointment by reviewing my blood work and asking me what I would have done different.  As if the answer to my ever changing bloodwork has to do with what I do and do not do.  Sure it ,may factor into it, but it’s not the entire answer.

Recently though, this question has me thinking more about what I would have done differently if I knew I’d have lupus in my life.  I’m not talking about regrets, but sure I would have done things differently.  So today this is a letter to my younger self.  

Dear Me,

You may not understand this now, but your life is going to be a bit like a winding road.  I know you think everything will go as you plan, we do that when we are young and invincible.  But listen, you are going to be diagnosed with a chronic, Invisble illness called lupus.  

Lupus is going to change your career path.  This is a good thing. Trust me on this.  You will have a more interesting carrier and help many people along the way.  You will meet incredible people too.  All because of a new career.  That’s because of lupus.

Do yourself a favour and don’t try to push through the fatigue you feel in your freshman year.  You won’t be doing yourself any favors and in the end no amount of napping will fix it.  That’s the first real symptom of lupus you want to act on.  The second will come in the summer of that year.  Your “sunburn” is really a rash, called a butterfly rash or a malar rash.  You will be frustrated trying to cover it up with makeup while still enjoying the summer.  Go see a doctor instead.  Trust me, the make up won’t hide it and you will be frustrated worrying about how you look.

I know you don’t believe this about yourself, but you really are stronger than you think.  Lupus will teach you this as nothing else has.  Lupus is going to keep you on your toes, but although there are times you feel like giving up you won’t because you are stronger than you thought.

You will get really good at thinking outside the box and getting creative with how to do things.  Your problem solving skills and critical thinking skills will become incredibly strong.  You can thank lupus for that.  It’s a good thing by the way, these skills will take you far.  

I know you don’t want to hear this, but you are worth the time and attention of a doctor.  Don’t be cavalier with your health and things will be a bit easier.  Trust me, that summer working in South America will start fun, but end up being horrible.  You can avoid this heed your specialist’s instructions about sun protection and not over doing things.  Don’t worry, you will still enjoy things, you just need to be sensible about things.

Oh and you know how you think you can do things all on your own all the time?  No one can do that. Lupus will help you to see that.  Again, is is a good thing.  Seriously asking for and accepting help will be hard, but you can do this and it’s a wonderful thing to do.  The sooner you get there , the more likely you will be able to carry out these things with grace rather than stumbling over things awkwardly.  Trust me on this.

I know you will feel scared and confused with lupus, but you will be okay.  You will get into researching your illness and advocacy which enrich your life.  Seriously.  You will learn compassion and empathy in a more personal way because of lupus.  In turn you will reflect these outward and help others.

It’s going to be okay, I promise.  And yes you will have a full life with more love than you could ever imagine. 



Looking Back With Lupus

Now and the it may seem like I’m lost or stuck in a phase of let’s  remember.  It may seem like I’m chasing my youth or early dreams.  And I guess sometimes I do a bit of that.  It’s natural, heck it’s normal.

And I won’t lie to you friends, there are some things that I wonder about.  But I wouldn’t be the woman I am today without having gone through what I went through.  There are only so many things a prep school education can prepare you for (no pun intended) and somehow living with lupus wasn’t covered.  At least not in my school.  Nor was living with a chronic illness nor living with an invisible illness.  So yeah some of my education was a bit rough isn’t lupus is a hands-on type of educator and I am more of a book learning kind of person.

Lupus taught me that I am so much stronger than I thought I ever would be.  Lupus taught me that it’s okay to raise your voice to be heard.  Lupus taught me that my stubborn behaviour  and determination would pay divides in my personal advocacy and helping others.  I aced those lessons to be sure.  I failed at asking for help.  (Still learning that one.). I failed at knowing where my limits are.  I am still trying to get to this idea of balance.  But it’s okay you know.  You learn how to lose and cope through all of this.

I shed a lot more tears than I ever thought.  But heaves have I learned how to laugh and not give damn what anyone thinks. I learned it’s okay to say I’m afraid and to still do something.  I learned what it is to be truly human and compassionate because lupus can take it all away from you.  I learned humility and faith.  

I don’t yearn for my past, not at all.  Sure I wonder what if, but this life lupus introduced me to can be more than what I had before.  So it’s okay to look back, just don’t miss what’s in front of you when you do it.

Lemons For Lupus

If life gives you lemons, make lemonade they say.  As if that’s all there is to it.  But of course you need to have all the ingredients to make lemonade.  I mean if life gives you lemons and no sugar, at best you’d have died lemon juice if you had water to go with your lemons.

But sometimes you have all the ingredients to make lemonade and so,you go ahead and do it.  But I beg of you to look around and see what else you have.  Because why stop at regular lemonade?  If you have culinary grade lavender, toss it in for a nice, lavender shade refreshing drink.  I mean it’s tasty and lovely to look at.

And I must confess, I cannot drink this or make it and not think it’s perfect for lupus.  It’s a lovely purple which is one of the colors of lupus.  It’s proof you can make something out of difficult situation, just like life with lupus isn’t all difficult.  And it’s perfect for respfreshingefreshing yourself, just as resting and having medications can help you feel refreshed despite lupus.

But you can do more with lemons too can’t you?  Lemon migraine pie anyone?  Lemon bars and lemon curd?  Yes please.  And that’s just the beginning.  Why do I tell you all this and not provide recipes?  Because it’s a bit like living with lupus.  Each person has his/her own way of coping with lupus and making the most out of things.  Just as we all are provided with different types and amounts of lemons.

The thing is, sure life can be sour or unpleasant with lupus.  But with the right ingredients and support, you can end up with something truly amazing.  Just like a life with lupus can still be amazing and wonderful, full of surprises and such.