Life With Lupus

My mom has been battling lupus for about ten years now. In fact I believe we just passed the ten year mark. By battling I mean truly fighting. From the get go. There are good days and there are bad days and when they are bad, they are bad.

Lupus is an autoimmune disease. That means her immune system, well, it mistakenly attacks her body. Her hands swell up into softballs, her fingers freeze into a hook position and she can't move them. Every joint she has is in pain because her antibodies are literally attacking her joints thinking that they are foreign particles in her body when obviously they are not. Feet, ankles, knees, arms, elbows, wrists, fingers, all of them. Excruciating pain that no one can quite understand unless you live with it. This is what it is like in a flare up. It's not always this bad, like I said, there are good days and there are bad.

But the bad can last for days or weeks. Right now, she's in a string of good days and we're thanking our lucky stars. But she's been on every single experimental drug there is to try and cope with it because the bad days completely level her. I cannot even imagine what the pain must be like as someone looking in from the outside. But seeing her in pain, my mom, this strong strong woman who can get her wisdom teeth pulled without drugs, who can mask her emotions without so much as a flinch -- to see her in pain that actually makes her cry (which she just so seldom does) well, it's crushing.

The lupus also causes her blood to be very very thick. That's actually how we found out she had it. It was one long day that literally lasted about three months.

I was still in college living on my own about an hour from home (and actually dating my now-husband -- but we would break up during all of this and get back together years later). My sister was in high school and one day she came home from school and found my mom on the couch unresponsive. Her head was in such pain she couldn't lift it. She was rushed to the hospital in an ambulance. I rushed there to meet them. We found out she had a cluster of little blood clots around the base of her brain and there was a tremendous amount of swelling. We didn't know she had lupus or rheumatoid yet (oh yes, have I mentioned she also has rheumatoid arthritis? It often goes hand in hand with people who have lupus).

Everything that happened after we got to the hospital is a fog for me. The doctor didn't think she would survive but we were so angry that he didn't seem to be doing much to help her survive either. We were scared out of our minds. My dad made an executive decision to pull her out and get her to a bigger hospital in Tampa -- and thank God he did. But that was just the beginning of the rollercoaster that would last for the next three months. She was in intensive care for a while (I couldn't even tell you how long -- all I know is I would go to work and then to class and then the hospital every day to meet my family. Every waking moment was focused around when the next time we'd get to the hospital would be).

She had a surgery that her neurosurgeon wasn't sure would work -- where he went in with the spiraly springy thing and busted the clots out. It was still experimental back then. (I remember him, Dr. Orr, we still consider him an angel, researching and researching until the wee hours of the night trying to figure out what to do.) The surgery seemed to work at first... But there was a point when the nurses said urgently, bring her family in. And we thought that might be goodbye.

My mom and I have had many conversations about that day. She remembers being completely out of it. But somehow, she remembers also making the conscious decision to fight. She knew what would happen if she didn't. And she fought. She fought hard. I've never seen such a fight. And she made it.

But the road after the surgery was tough -- she hemorrhaged, she clotted, she hemorrhaged, she clotted; her body just wouldn't get blood-thinners right. This happened for the next three months until her body finally responded and she came home.

It's funny what you remember when your family goes through such a time of turmoil. I remember going home for the first time after she first went to the hospital and one of my dad's co-workers brought over a platter of sandwiches. We forgot we were hungry we were in such a stupor. We devoured them like nobody's business. But I'll never forget him for doing that. When my dad talks about him, I still say, "Oh, that's the guy who brought us sandwiches?" I don't think he knows what those sandwiches meant to me to this day. Of course, it wasn't about the sandwiches. Well, it was a little. But I feel like in a way he saved us that day. Anyway, forever on, when someone goes through something -- I do my very best to bring them food. To pay it forward, I guess.

I also remember being so hopeful that she would be out of the hospital by Thanksgiving Day, but she wasn't. So instead we brought Thanksgiving to her. I bought the turkey and all the fixins from a grocery store, brought in a giant table, and by God, we had Thanksgiving in her hospital room. (She wasn't a fan of the cornbread stuffing, of course. Picky picky!) But it was probably one of the most thankful Thanksgivings I've ever had. I still had my mom.

Then I remember that there was a lot of wine drinking too. Not one of my better moments -- I know -- but wine was my friend back then. And when we weren't sure if she'd come home in time for Christmas, I remember being in the parking lot of Boston Market after getting us all some food and crying my eyes out to the song, "Please Come Home for Christmas" by the Eagles, a song that still makes me cry and think of my mom to this day.

I remember that my dad refused to sleep in the bed without my mom. It was so matter-of-fact. He would just say, Nope. Not until she comes home. And he spent his nights either at the hospital with her or on a couch.

Man, that chunk of time was so pivotal, it was like time had stopped. In conversations with each other, we still refer to things in our lives as "before she got sick" and "after she got sick". Like going from the Mesozoic Era to the Paleolithic or something like that. Climates have changed, (you try telling a workaholic she can no longer work!) moods have changed, behaviors have changed, even animals have changed (when she came home, she got our little chihuahua, Stanley. That little pistol!)

We have changed.

So this was our experience with lupus. We still, she still, experiences it every day. We are such a close family, the four of us, that this ride was, and still is, ours. It's not a picnic. But she's here still. She's the fighter of the family. And because she fought so hard, she was there by my side at my wedding and there with my sister at hers.

And yep, she was the first one at the hospital when I went into labor. She was there when I had my babies and she got to look into the eyes of her baby's baby and be a grandma.

We've planned parties, yelled at each other, laughed and cried, celebrated births and holidays, drank countless cups of tea together wearing feather boas and I am telling you, there is no stopping this lady. She is Wonder Woman.

There is no shortage of miracles in my life and she is one of them. So take that, Lupus.
Read more about July's Write Away Contest at Scribbit here.


  1. Let me tell you..I so know! One of my very best friends has lupus. We have been through it with her. Two summers ago, she almost lost her life, then her leg. Fortunately she got to keep both. She is a trooper. She is a nurse that cares for others, and not ever once do you hear her complaining, even though we all know she is in constant pain. There is something about lupus...it happens to the nicest people!
    You and your momma are so stinking cute in those hats! :)

  2. What a wonderful post. YOu are such a great writer.

    I loved hearing about your family and how you went to the hospital everyday.

    I know you are so glad that your mother has been around to see your sweet babies!!

  3. What an amazing story! And your mom sounds like an amazing woman. I pray that she has more good days than bad.

  4. I can't begin to tell you how touched I am. My family went through a terrible illness with my mom, and even if hers was terminal and different in plenty of ways, I kept nodding my head relating to so very much of what you said. Watching a parent you love go through something so crappy is just plain hard.

    Do you know that people from my parents' church brought us meals a few nights a week for well over a year when we were caring for my mom? Over a year, maybe almost two. Yes, really. I've often said that it may have been just that one thing that kept the wheels from falling completely off. So, I get it about the sandwiches, and I also immediately think of meals when I want to help, too. Reading that was like reading about myself :)

    My favorite line was the last. I *love* how your family has made a point of drawing close in response to something so cruel as Lupus. You are awesome. Thank you for sharing such honest and real thoughts, and I wish your mom all the best. What a strong, strong woman.

  5. It was GOD that performed miracles. No one could understand what he can do unless you have had him there with you. He continues to give even to this very day. Praise GOD is something I do not say lightly..............he's there for you too..................

    He provides for us all..Just ask..
    been there and back. Thanks for my wife and children..and my other family members for their strength also.
    God bless you all too...
    Christies Dad

  6. Thanks for sharing this--I've never known really what lupus was before. Your mom sounds amazing--what a strong woman!


Talk to me, Goose!

I love comments. Who doesn't love a good comment?