Christie O.

I wish my mom would catch a break

My mom

It began 17 years ago when my sister came home from high school one day and found my mom laying on the couch, semi conscious.

My dad came home from work. They rushed her to the hospital. No one knew what was happening.

They called me to come home. I was at USF.

When I got there, Mom was in a cold room by herself. An MRI told us she had several blood clots at the base of her brain. A nurse pulled my dad aside and said, “Get her out of here. If you don’t, she’ll die.”

Was that our angel? We will always wonder.

We transferred her to Tampa General Hospital where over the next three months we found out what she was going through was stuff for the medical journals. A team worked around the clock every day. Our neurosurgeon pulled all-nighters researching. She had emergency surgery for venous sinus thrombosis, three blood clots at the base of her brain. They would use clot busting drugs and go in and poke the clots with a tiny coil.

She remembers fading to black and hearing the nurse tell the doctors to bring in her family. The nurse didn’t say why, but my mom knew. She decided then she would fight.

Her blood, it turned out, was sludge. She had lupus antiphospholipid syndrome (anticoagulant). After the surgery, we tried out blood thinners, much of the time to no avail. She bled through several painful hematomas, and clotted, and that was the pattern for months. On Thanksgiving, we brought the entire Thanksgiving spread, turkey, pie, & all the sides, to her hospital room and all the nurses feasted with us.

We prayed she would be home for Christmas. “Please Come Home for Christmas,” made me cry the ugly cry in the Boston Market parking lot as I was getting us all dinner. Sometimes it still does.

Finally what worked was daily Lovenox injections, which at the time was experimental. She came home for Christmas. She made it just in time.

As it turned out, she also had rheumatoid arthritis. Which explained why, when we went on vacation that summer before, she was laid out in the hotel room and couldn’t move. The lupus and rheumatoid sends her into flare-ups where she can’t move, everything hurts. It is like the flu. It comes on suddenly and lasts as long as it wants. Her white blood cells attacking her joints.

Over the years, she has gone through countless medications for the rheumatoid and lupus, but eventually she develops an immunity to them and has to move on to another. Infusions, shots, pills. Steroids.

She would make plans to do something and then a flare-up would make other plans for her. I can tell in one note of her voice on the phone if she’s in a flare-up.

Normal everyday tasks have become events.

Colds have become pneumonia.

She lives her life by thespoon theory.” And she must spend them wisely.

mom in panama city beach

She looks fine on the outside, but underneath she’s not. It is a battle every day.

For 17 years, we’ve gone through drugs and reactions and torn muscles, injuries that won’t heal, trips to the Mayo Clinic, doctors who scratch their heads, who sometimes seem to know as much as we do: that something is wrong, but we don’t know what.

It has been an unimaginable, painful roller coaster for her and now I can see it wearing her down. The strongest lady I know getting weary from the fight. It breaks my heart.

I just pray that my mom could just catch a break. I just want her to catch a break. I just want to scream, I do scream, Please DEAR GOD LET HER CATCH A BREAK!

That she could make the short car ride, without pain, to a soccer game. That she can just do normal things, things we all take for granted. Go shopping, travel, time with family, sew, go to tiny concerts & ball games. Get up. Get dressed. Any of it, all of it.

I just wish she could catch a break, just for once. A long(ish) span of time where she is pain-free, injury-free, pneumonia-free, where she could do anything she wants, anything. With each setback, we think a break is around the corner. An elusive oasis. I can see her frustration.

She doesn’t deserve this. No one deserves this. I ask why, we all ask why, but there is no reason why and we know that.

This latest setback is several broken vertebrae. They say it’s because of the years of steroids and medication that eventually wears down your bones. But who knows? We never really know anything. And we certainly never ever know why.

So tomorrow is the surgery to fuse it back together. Her pain this week has been incredible. A 12 on a scale of 1-10. My heart has broken a thousand times watching. I watch my dad, with tears in his eyes, hold her hand and watch her as she finally falls asleep.

I am going to believe that a break is coming. I have to. We have to. Because I know she will come home and eventually she will read what I am writing here (she always does) so mom, if you’re reading this, we are in this with you. You can’t stop fighting because we need you. Your grandkids need you.You are our rock. Our matriarch. We just do not work without you. But most importantly, you have to know, you must know, that you are not alone. You are are helping other people who have these autoimmune diseases and by us talking about it, they will understand that they, too, are not alone. You, my mumsy, Anna Mary’s momulla, or “mamnee” (as the kids call you) have made it through the toughest of the tough.

my mom and sister

I know it is hard. I know you are tired. But I have faith, and I know you do too, that whatever happens, it will all be ok. It is always ok. OK? I love you. We will be getting a mani-pedi, going to tea, and sewing things and baking things before you know it. 

Wish us luck tomorrow, we will need a prayer or healing thought or two, whichever you have to give.

Question for you: do you suffer from autoimmune disease or know someone who does? Are you on this crazy journey too? Please share your story below and if you have questions about our experience, please feel free to ask. xo

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