This snuck up on me.

I’m not going to lie.

And I have been so overwhelmed with what has happened, I frankly have not known where to start in saying thank you, or even showing you what has been happening in my mailbox and on my head.

It started with a few hats in the mail from my Mom. Yes, my Mom sent some hats. In my world where my Mom sends things frequently, this is totally normal. Then my Aunt sent a hat along with some things for the kids. Hmmmm, my Aunt and Mom must have been shopping together. 

Again, entirely normal. So I didn’t think anything of it.

And then, suddenly, Howard (my mail carrier) knocked on my door to deliver a bunch more boxes and envelopes. He laughed and made some joke about how popular I was.

Hats. It was more and more hats. 

Some came with totally inappropriate notes. Others with heartfelt poems. Some just with words of encouragement. Some with nothing. Absolutely nothing. Just a hat in a box.

I begged Aaron to tell me what was happening. He had to know, right?

He got that shit-eating grin on his face, and denied knowing a thing. I had to thank whomever did this. I had to explain what it felt like, as Lupus took yet another part of ME…my pretty red hair…and turned me again into this person I didn’t know or recognize.

But who? Why? What in the hell was going on?

Either fearing one of my steroid HULK SMASH moments or just wanting to help me say ‘thank you’ too because even HE was stunned by the amount of mail coming into the house….Aaron broke down and told me what he had done.

Aaron and Megan reached out to all our friends and family and told them about my hair:

In all seriousness, Erin (@QueenofSpain), in her valiant fight with Lupus, is doing battle with new treatments with a nasty side effect that is most likely going to cause her to lose her hair. We don’t know if she will lose it all, just some, or somewhere in between, but in any matter, it’s yet another frustrating part of all this, and it’s already half gone.

Erin could use some hats to keep her warm and make her feel beautiful. This is where you come in. Do you knit? Do you crochet? Do you sew? Do you shop? If so, it would be lovely if you could send a hat her way. Hats can be fashionable, cheap, silly, or otherwise. If you have an old hat that has sentimental value and you want to pass the love on to her that would be great. Send her a Colorado Avalanche cap for yucks. It’s not just about hats for her head but love for her heart.

This made my heart skip a beat. First, that they knew I was trying to struggle quietly about my hair. Second, that Megan had, once again, helped out in her organizational way. She rocks like that.

But really, because I can’t lie any longer and it’s stupid to even try to hide the vanity issues that come with this…it was the thought that Aaron doesn’t see me as growing uglier with this disease- steroid fat, hair loss, stretch marks, the works…but instead he was seeing courage. And beauty. I don’t know how anyone can see that in THIS body. This body that is NOT mine, but he knew EXACTLY how to take any fear I had about it and turn it into hope. When your husband loves you for YOU, it’s such a wonderful thing. I don’t know how he does it. I really don’t. Here I am, watching hair after thin piece of hair come out with every brush stroke, and he’s thinking about how hot I look in a cloche hat. When your friend will do anything for YOU, not your twitter follower count or your ability to make really awesome Christmas cookies…it’s such a wonderful feeling.

So now that I know what is going on, and can better understand what has happened…I want to say thank you. But thank you doesn’t seem like nearly enough when poor Howard is here every single night delivering box after box after box.

So I thought I would feature a few hats each Wednesday so you can see the wonderfulness that has come to my home. The hand-made, the thoughtful colors, the totally rocking, shopped for with STYLE, amazingness.

Kicking it off this Sunday (yes, I realize it’s not Wednesday but I couldn’t wait much longer) just so you can get a good giggle, here is the Detroit Lions TURKEY hat sent to me by none other than Sarah –

and one helluva Viking girl hat sent to me by Undercovermama (and modeled by my daughter who thinks this hat is so awesome she won’t let ME wear it…dang it).

And then a photo, just for good measure and fun, that has my daughter and Alana trying on ALL my new hats and seeing how many they can balance on their heads. Goofballs.

As for my hair? It’s thin, but hanging in there. By a thread. Now I really get what that means. I’m very thin on top and not entirely comfortable going out without a hat on. I can still easily cover the thin spots on top. My doctor actually offered me Rogaine. He said while now my hair may not look that bad, in a few months when everything really starts kick in, that’s when I’ll wish I had started Rogaine. Aaron and I talked about it and we really don’t want to add another chemical to my system, so we’re just going to stick with the hats. And if it gets really bad, maybe I’ll shave my head like he does. We’ll see.

There is a real possibly that Monday the doctor will up the low-dose chemo that is causing the hair loss. Or not. I may stay right where I am at, and watch is slowly slllllloowwwly fall out strand by strand.

I’ve officially caused Aaron to go buy more drain-o for the upstairs sink, where I brush my hair. It’s nice and clogged up there. However the same week I hugged two people, both wearing all black, and I didn’t get a strand on them. Strange considering every time you encounter me you I usually leave my calling card somewhere on you…a nice, long, red hair. So I just don’t know how all this will go. Will it get better? Worse? No idea.

I can tell you the hats make me FEEL better. I have a million to choose from each morning before I walk out the door and LOVE IT. I have always been a hat girl. And now to have hats with love behind them? Heaven.

So from the top of my balding head to the bottom of my toes: thank you.

It seems so small to say thank you. Like it means nothing, after you all done so much. But truly…thank you.

Now I’m off to pick out the right, warm, cute, full of love hat to put on my head before riding lessons for my daughter. Which one do you recommend?                                                                                                                                                

As a parent, I don’t know many more scary things than a sick kid. Add in a chronically ill mother and what is usually just part of childhood becomes an uncomfortable conversation.

Mom, that stuff the doctor said I had to take…that’s the same stuff you have for Lupus.

You mean the prednisone? Yes. But it’s just a steroid to help your chest. You will only have it for three days, I had it for many, many months and lots and lots more of it.

But I don’t have Lupus, right? So why would I have to take it, if it’s for Lupus?

No honey you don’t have Lupus. It’s a steroid they give a lot of people for a lot of reasons. You just have an infection in your chest, so they are using it very, very quickly to get rid of the infection.

But Mom it’s for Lupus.

No, it’s not. A lot of people take it for a lot of things. Lupus is just one of them- and look, I am not even taking it right now. I’m getting shots and IVs with a different steroid. There are all kinds of steroids. This is just one, and this one you will take for only three days. That’s it. Then you are done.

But it’s not because of Lupus, it’s because of my infection….

Right. Exactly.

And thus the conversation went. And I realized just how much those little ears hear. Just how much they have had to learn about things they shouldn’t be bothered with at this age. And just how much more I want to hug them and protect them from this stupid, horrible, life changing disorder.

#suckitlupus

There are things that happen in a family when someone is sick. Good and bad. A lot of stuff that I just can’t write about all the time, or we’d all just be depressed 24/7. It’s not that I don’t want to get it all out…believe me, I do. But there is a part of me that wants to spare you the whining. Because it does feel like whining sometimes.

What people do not understand about a chronic illness like Lupus is that the treatment, and medication, and most importantly that the illness is chronic.

Hear me out.

It never ends.

It just keeps going. And going. And going.

I see the doctor for an office visit. I see the doctor for a 7 hour treatment. Another 7 hour treatment. Another 7 hour treatment. Then a 2.5 hour treatment the next day. Then a half an hour treatment once a week. Oh, and every two weeks I see my pain management doctor who tries to keep all the pain for all of the above under control so I don’t have to be in the hospital for pain management. Then an x-ray. Then an MRI. Then I see my regular doctor to update him. Then I see my OBGYN to update her. Then I do another round of all those treatments up there. Then another office visit. Then the neurologist. And he orders some tests. So we get those tests done and then it’s time again for all those treatments up there and visits and ….do you get the idea here?

It never ends. On average I see a doctor 3 out of 5 days per week. Most of those days include needles. And it’s exhausting.

But understand it’s NOT exhausting for me all the time, it’s exhausting for everyone who loves me.

Why?

Some days the news is good. Some days it’s iffy. Some days the news is crappy. Some nights Aaron drives me to the ER and they always offer to keep me. Sometimes I have them keep me and I have to stay a few days. Sometimes I just come home and do the best I can.

It’s not that we’re not thankful that I am better overall, it’s just that this isn’t like a cancer or some illness where you fight it and fight it and either you beat it or you die. It’s not like that. I have to fight and fight and fight and fight and fight and fight and fight and fight and the fight just keeps going. And it doesn’t seem to matter how hard I fight or how hard my family hopes and wishes or how hard we all work together…

It just NEVER FUCKING ENDS.

It doesn’t stop. The appointments. The treatments. The need for help. The need for hope. The need for NEED.

And some days it’s just hard to wake up and do it all over again.

Believe me. I’ve learned a lot since this all started over a year ago. Almost two years now.

I’ve learned how to swallow my pride and say ‘yes’ to help. I’ve learned that I can not fix everything. I have learned that I am not in control. I have learned that I still screw up a lot. I have learned that my children are more resilient than I ever imagined. I have learned that my husband is stronger than I ever knew. And I have learned that some friends will surprise you in the best and worst of ways. I have learned that love does make it all better and helps me fight harder, but I have also learned that I can’t make it all better just by loving back. Love doesn’t cure Lupus either, but it sure is powerful against it.

I have also learned that I do not know how to handle this on going shit storm that just does not stop. I have to plan again for treatment that starts on the 7th. Right after speaking on the 4th at Blog World Expo– provided I am strong enough…which I should be since the only travel involved is getting in a car and going downtown.

Maybe this is the story I need to tell more often when people ask me about having Lupus. Maybe I need to explain more about this being one hell of a long marathon. And how it’s hard to ask people to hang on just a bit longer for me to get better, to please just help me ride this out, to please, please just understand that I too wish I could attend/workat/cometo/beinvolvedwith/helpoutat/domorethan/be/do/fillintheblank thing you are asking me to do.

I don’t want to go to bed early. I don’t want to take naps. I don’t want to say ‘no’ and I sure as hell don’t want to have to be left out of that whatever for the 20th time because no, I’m STILL not well enough.

So before you go feeling sorry for me, or annoyed with me for bitching, know that – overall – I am improved. It’s just slow. So slow that it’s nearly killing me slow. Ok that’s not literal but you get the idea.

Aaron and I just need an extra push to get us over this hump so we can battle this for a bit longer. We still have a ways to go before I can declare anything normal around here and before I can finally feel like I contribute to the house, work, life, etc.

I can do much more now than I could before. I’m not losing organs. I’m not in the hospital. That’s all good. But the treatments are never-ending. The doctor is stuck to me like glue right now, his choice, because I need to be ‘watched closely’ right now. And I’m just afraid that we’re worn down here a bit too much.

Nothing helps more than having those moments where the four of us are laughing and playing. Nothing helps more than being able to see relief in their faces and when that’s not possible, to at least see joy. Tickle fights need to happen more often. Maybe we need to have a live version of Angry Birds and toss some stuffed birds and pigs around the house. Maybe we need to make a batch of my Dad’s special ‘cider’ and take the kids trick-or-treating with friends and just talk and laugh. Yes, there will be me in a wheelchair as the constant reminder but hey, that means I can hold more cider and candy.

Silver linings. I will be pushing more and more of them as we keep pushing on and on and on. Because Lupus = chronic and this is a long fight. A long, long fight. And just when I think I don’t have anymore in me I hear from a small voice upstairs how if Mom were a stuffed animal we’d name her Squishy because she’s the squishiest. If Dad were a stuffed animal he’d be ‘PG’ for ‘Party Guy’ ’cause he’s the most fun. And I laugh to myself and shake my head at the crazy things the kids come up with and realize that during all of this, in order to get through, we need to get a little crazy too.

Silly.

Crazy.

It works. It makes us laugh and the more we laugh, the better. And we could really use some laughter right now. Mom and Dad are tired. Battle worn and weary and in need of some belly laughs.

And I refuse to let Lupus take those away.

Ever.