You Got This Lupus Warrior

U.  U is for you.  U is for understanding.  U is for undercover, unseen and untapped.  U is for uncertainty and unknown.  U is for (UV) or ultraviolet rays.  U is for unique.

U is also the second and second last letter in the word lupus.

A diagnosis of lupus may bring feels of uncertainty, or leave you feeling unbalanced, at first but you will find your way.  A diagnosis helps move the unknown reason for symptoms into a place where it makes sense.  This comes with the understanding once you have a diagnosis and learn about this disease (such as how UV rays can trigger a flare of the disease activity).

Lupus warriors work undercover a lot of the time due to the fact that lupus is an invisible illness.  So much of the challenges that come with lupus are unseen by a healthy person.  Providing lupus awareness information helps build understanding around the illness and with understanding may come a cure.

Just as each lupus warrior is a unique person, how lupus affects each warrior will be unique too.  But if there is one truth I have learned since starting my own journey with lupus is this:  each lupus warrior has an incredible amount of untapped strength..that is until s/he needs it.  So fellow lupus warriors, or those who care for a lupus warrior know this, you got this battle, you have the strength to get through.  And you are not unsupported.

 

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Nourishing The Soul

Lovely smells wafted in from the kitchen, a mixture of savoury and sweet.  Tempting me to at least consider trying to eat regardless of what the consequences would be.  This isn’t the first time a lovely person has created magic in my kitchen.  Magic that meted me to at least taste the creations.

This time the lovely personwas Beloved and he created everything from tasty salad creations to soup and a simple, light entrée.  Consuming even just a little bit of any one of the creations would put a huge smile on his face.  But just in case none of those would tempt me he made a simple oatmeal.

I suspect he would have made me anything if it meant getting some nourishment into my body.  He isn’t a huge fan of living off smoothies or smoothie bowls, but some days that’s all I can manage or want.

But today I sampled some of his soup and a few mouthfuls of salad before retreating to rest in a comfortable chair again.  And as I sat down I again gave thanks for all the amazing people in my life.  Especially those like Beloved who ignore my mood being down while lupus is on the uptick.

Finding The Us or How Despite Lupus Being Isolating, There Is Always An Us

I still remember, clearly, when I deceived my diagnosis of lupus.  The sun was out, birds were flying outside my doctor’s office and my doctor’s face bore the hallmarks of delivering unpleasant news.

He told me he was sorry to have to tell me I had lupus.  He was quick to assure me it wasn’t a death sentence, but was going to change my life going forward.  He also said it wouldn’t necessarily be easy, but it wouldn’t always be hard.  He spelled out how the disease can affect the body and was very clear that remission could happen.

Even with my own unease at this, I realized that this wasn’t something I would face alone.  It struck me then, as it does now, that there is the word “us” in lupus.  Us, as in a team, a group or not alone.

There is something comforting in knowing that you never face something completely alone.  Even when you think you just want to handle it all on your own.

Over the years doctors have come and gone in my life.  Some have stayed, the ones who are part of my team.  My lupus team.  The ones who remind me of the “us” in lupus.  The ones who assure me I’m not alone.

There are other people who fill in the “us” too.  Friends, loved ones and support people.  So each of us who have lupus need to remember there is an “us”, even in the darkest of moments.  We are never alone.  Because with lupus there is always an “us”.  You just have to look for it!

Saints And Sanity

Beloved is a man with the patience of the Saint, or close to it.  He has to be in order to live with me.  I can’t even tolerate my stubbornness which leads to insane delays that lead me back to square one  sometimes.  But he just smiles and waits while I sort it out and somehow avoids the whole I told you so bit.

He claims he really isn’t all that goods with this stuff either, just has figured out how to fake things better than some other people. Of course he also says that living with someone with a chronic illness like lupus has taught him to encourage slow time.  He simply savours the moments as best he can.

Beloved has the grace of someone who is a saint.  He has the grace to allow me to stubborn my way through things.  He is gracious with me, generous it’s time and encouragement when t might be easier to just don’t on his own.  His grace allows me to admit defeat or not even starting something.

But he isn’t, a saint that is.  At least not according to the religious experts. That’s okay thought because in my eyes he is a saint, my saint.  He puts the sane in sanity in this life with lupus.

Sharin’ ‘Em

A while ago I stayed at a bed and breakfast which had the most amazing food and quilts. Not together mind you, but the food was some of the most delicious and simple food I’ve ever had and as for the quilt, well it was perfect in weight and comfort.

It was the kind of place that you want to share with someone, or maybe it was the experience that I wanted to share most of all with a certain someone.  At any rate it was a lovely visit that i know a certain person in my life would have enjoyed with me.

You see this person is an amazing friend, one I’ve unfortunately taken for granted at times, ignored at times and such.  She is one of the most incredible people I know.  When I told her about my diagnosis of lupus she went out and did her own research, not just to understand the illness, but also how to be involved in and incredibly supportive way.

The delicious food was something that I know she would have enjoyed and we would have had a wonderful time sharing and tasting things.  As for the quilt, well this lady makes the most amazing hand stitched quilts.  Anyone who receives any of her handy work (she does al types of amazing, creative things made with love) is truly lucky for they are made with love and that love simply wraps around you.

Without ever saying it, her support, her love and her positivity has always been open to me.  Sadly I’ve been too stubborn at times to receive or be open to her positiveness.  As I lack creative skills,I am unable to develop a quilt for her to let her know how important she has been in my journey in life with lupus.

What Need For Speed Taught Me

So I met a friend for coffee the other day. A friend I haven’t seen in a while. Life kind of got in the way of us getting together, well that and occasionally an ocean or two and a few thousand (give or take) miles. Now with this friend, let’s just say we clicked right away. I’m not sure how or why, but we just got each other from our first meeting. It was like we were always friends.

While we were having coffee, well technically she was having a tea latte of some type while I savored, or is that devoured, a coffee, we caught up on missing time. You know all the usual stuff, except her what’s new news was that her husband was dying. She didn’t lead up to it, didn’t soften the blow, just told me that he was dying and had a few months at best left.

Usually this is news you come up to in some what of a gentle fashion, or at least a slow lead up. But she felt there was no need for it. How she told me wasn’t going to change the fact he was dying. It wasn’t going to ease her pain or her loss either. She felt it as a raw open wound every moment of her life and she let her way of telling people be just as raw. It wasn’t mean. It wasn’t deliberate. It just simply was the way she said it.

She said that she learned that she had a need for speed these days, every second she spent on the road away from home was a second she’d have less with her husband. And yet, here she was, spending time away from him because life does go on doesn’t it? She found that with her desire for speed in getting back to him she also no longer considered things in the same light. A speed limit shifted from a hard fast rule to just something that was placed on a road. It didn’t’ take into account driver’s skill or the car’s performance. She also no longer worried about driving as fast.

Basically she was far more willing to take risks these days if it meant more time with him. And in having a higher tolerance and acceptance to taking risks, her frustration level with the slower, more cautious people was growing to the point of no return. And still she sat across from me, having a tea latter while she explained all of this to me. Her anger, her frustration, her despair all tumbled out and onto the table, along with a speeding ticket.

The ticket, she told me, didn’t really matter. Not in the big picture. She was certain there would be more of those as time became more valuable. She was positive there would be one for the drive to the airport for their final vacation. The type of vacation where only one person comes back in the same state as they left.

And then she would have a different need for speed. Speed would be important to get past those long and lonely hours. What she would be running to I wouldn’t be able guess. What she would be running away from? Herself and an empty house.

We visited far longer than I had thought we would and when I got home I looked at my four-footed companion in wonder. Marveling at her ability to simply live in the moment. Maybe if we figured this out the need for speeding would be less.

Holding It All

It’s funny how you never notice someone aging when you live with them most of the time. Its like suddenly one day, they have aged and you have no clue how that happened. It struck me today watching Beloved’s hand grasp the steering wheel. These are older hands, hands of a man who has experienced a great deal more distress and trauma than when I first met him.

Perhaps his hands also represent lessons learned through experiences and friendships. And they surely represent the journeys he has been on in that time.

He has a small scar, barely noticeable now, on his left thumb courtesy of a stubborn window that wouldn’t close, but gave way under pressure. I wonder, when people look at his thumb, do they notice the scar? Do they wonder how he got it or does it even matter to them.

His are hands of a man who hasn’t worked manual labor, which I’m sure some people notice when they look at his hands. He has been blessed and able to choose to make his work of the intellectual variety rather than manual. And his hand tell that tale in their softness and immaculate manicure.

It’s hard to believe that those were than hands that so tightly gripped mine when we heard the words “sorry, you have cancer”. Those hands were the ones that balled up into fists as he endured radiation and chemo. And those were the hands that slapped the desk with glee when he was told he was cancer-free now.

Those are the same hands, strong and sure, that can also be so gentle and unsure when it comes to dealing with my follies and health. Those are the hands that aren’t sure if they should touch me when I’m in pain, or try to soothe me when I rage at whatever it is that has my attention for the given moment.

Those hands have patted students on the back, clapped in celebration as students graduated and shook the hands of newly made PhDs. They’ve also held new born babies, and clasped the hands of the dying. They have held many a book and dropped many a tool.

And now, suddenly today, as I watched him drive the car, I realized that like the rest of him, his hands have grown a little older. A little different. Not that you would notice easily if you live with him all the time…but changed nonetheless.

Changed and yet the same. The hands that still reach for mine, as mine reach for his. The hands that hold me and are there for me are a little older, a little more experienced like the man they are attached to. Just as I’m sure mine have changed and altered over time and experience. Still we shall hold it and each other together with this changing hands of ours, hope and trust, faith and love that no matter what else comes our way we will somehow find a way to handle it.