I’m so flipping tired. I feel like my eyeballs are going to fall out of my head. Why, oh why am I feeling this way, might you ask? I’m not even going to address the possibility of Lupus contributing here. I’m pointing a stern, accusatory finger at my son Cohen on this one. My baby, nay, my 6 month old, may be trying to kill me. Because let’s get it straight- there really is no reason for a 6 MONTH OLD to have never slept a decent stretch of time in his whole life.
Cohen regularly wakes up to eat every 2-3 hours throughout the night. Last night I fed him at 7:30 PM, 10 PM, 1 AM, 4 AM, 6 AM, and 8 AM. You often hear nursing women refer to themselves as “a milk factory.” That is not me. I’m a freaking beverage cart. And my son is that socially awkward guy who hangs around all day long, for no acceptable reason. He’s the linger-er who is not picking up any of my social cues that he has clearly worn out his welcome. No one needs 10 big gulps a day, Cohen. Go home.
I’m not being mean. I swear. (Well, maybe a little bit.) But, I can’t come up with any valid argument as to why my kid needs to be eating this often.

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I mean look at him. HE’S ROUND. He clearly is not trying to catch up from any sort of caloric deficiency.
But what can I do? I’m not going to rush starting him on solids before I feel like he’s ready, just in hopes I can catch a few extra z’s. I’m also not going to put my baby on any type of eating schedule. That may work for some folks, but I’m just not doing it. I’m going to do whatever I can with whatever I’ve got to foster this little guy’s attachment. Even if that means we’re meeting 5 times a night and my brain hurts all day long from sleep deprivation. I LOVE being able to love on my boy in any way his heart desires right now; I would just also love to feel like a functioning human being.
So honestly, I don’t know that I’m actually looking for advice here. I’m not even really looking for any sympathy. I just needed to complain for a second and say, World, if I’m failing you, it’s because I’m freaking tired.

I know I’ve been slacking lately. It’s been for good reasons. Kinda.

BUT…

I now have at least one accomplishment to show for the past few weeks. A fellow Momma, Lupine, and Blogger, Deanna, has me guest blogging on her site today! If you happen to be curious about how I’m processing living with Lupus while raising two (adorable) young kids, head on over to Raising Inspiration, and check it out!

I’m a little late to the game, but Happy New Year!

We had a really busy, but overall really great past week. Kevin came down with some kind of cold/respiratory infection the sunday before last (Makaila’s birthday) but we were still able to have a sweet and quiet celebration for her at home. And with only a few motherly tears on my end. The rest of the week was spent watching College Football bowl games (Ay-oh, Ducks!) and getting ready for Makaila’s birthday party.

With my limitations in mind, I tried to be ultra-conservative this year: keeping the guest list small and my vision for the party reasonable. What ended up happening because of that was me actually postponing the planing and preparing until way later than I should have, leaving me a bit stressed in the days leading up to it. I can be my own worst enemy. Luckily, with LOTS of help from amazing friends, we were able to pull it all off. Here are some pictures from the special event.

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I picked out at least 200 red M&M’s out of that thing so that they would fit the color scheme. In case you were wondering.

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Hot pink balloons and ruffled streamers. 

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Glittery cupcakes. So fun.

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Makaila being chauffeured by her future husband, Elliot.

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She doesn’t usually eat sweets. I think she was in shock.

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It was a fabulous evening, and I think Makaila had more fun than she’s ever had in her life. And that’s all we really wanted. For M to have some of her favorite people all together, loving on her and celebrating under one roof. There are tons of pictures to prove that, but I would need to ask like a billion people for permission to post pictures of them and their children on my blog for the world to see. And since I have more respect for other people’s privacy than my own, I’ll just assure you with my words that she had the best time ever. It was perfect.

The whole weekend actually turned out to be a “last hurrah” of sorts for my husband and me. Kevin is taking his boards in July, which means we may not most likely won’t see his face for the next 6 months. But that’s just a part of having a husband in medical school. It won’t be like this forever.  Anyway- Saturday night Kevin and I actually got to go out! Like, to an adult party, where we got to have real grown up conversations. I don’t think that’s happened since before we became parents. Sad, but true. So that was really great. Then to top it off, some dear friends of ours took our 2 kids on top of their own 2 kids and INSISTED that we invest into our marriage by taking a date night.  Have I mentioned that we have really wonderful friends? We ended up going to see Les Miserables, which, I probably don’t even have to tell you, was phenomenal. All in all, pretty much the best weekend ever.

Now with Kevin back in school, it’s back to reality. My house is still out of order from Christmas AND M’s party, and I have all the ambition in the world to whip it back into shape, but none of the energy. I still need to go through all the kids’ toys and make up a donation bag to make room for the new ones, which are currently strewn about the house. And all of the miscellaneous things that needed to find their homes after the holiday decorations came down some how got relegated to the guest bedroom. So the majority of my house appears clean, which helps my sanity, but I know that there is a mess just waiting for me back there, and that in itself drives me a little crazy anyway. Hopefully I can find the time and energy to get that taken care of soon…

Can I just tell you one thing that happens to be making my life so much easier and amazing right now though? It’s this, which was a gift from my parents for Christmas. And I am in love with it.

http://www.bunnathome.com/products/single-serve/my-cafe-mcu

For those of you too… whatever… to follow the link (I can’t blame you) it’s the Bunn 4 in 1 My Cafe MCU. It’s a single-serve brewer, that takes K-cups, Pods, ground coffee, tea bags, and loose tea. It is fast, and easy, and GLORIOUS. And when everything else these days seems so hard, I’m all about having convenience where I can. So instead of being too tired and thus cranky to brew up a pot of coffee when it is obvious that I really need it, now I grab a K-cup, put in some water, and voila! I have a perfect cup of heaven within 30 seconds. And what this really means is that now I’m not making myself and everyone else around me miserable from my caffeine-withdrawls. Win-win-win. My fave right now is the Starbucks Blonde Roast K-cup.  And if coffee isn’t your thing, I really recommend Twinnings Chai Tea- (and I’m not even a tea fan, so that should say a lot.) If you’re in the market for a single-serve home brewer, I highly suggest this machine. I feel like I should be getting paid for this review right now…

Something else that is exciting for me is that this week I’m going to be working on a guest blog post! This just after having been featured on the I Am More Than Lupus Facebook page! Am I like famous now, or what?! More details on that to follow, so stay tuned. Not as exciting- tonight I’m working on transitioning Cohen out of my bed and into his pack n play, right next to my bed. You wouldn’t think that would be too hard, but he is an observant little feller. The reason for this move is that Kevin is sort of a wild sleeper, and he asked that I would allow him to feel safe while he sleeps, instead of being half awake all night, worrying that he is going to accidentally kill his only son. Which I guess is a fair request. So pray for me in that, because I’ve been holding in my kid’s binky for half and hour now and he is still awake. Uggghhh…

Alright. It may be a long night. I better try to get to bed now in anticipation for a potential battle of the wills.

Tomorrow is Makaila’s 2nd birthday. So, naturally I’m looking through baby photos and crying my eyes out. Since this is my blog and I can do what I want, I’m going to flood this post with some of them. Bear with me.

Momma & Makaila

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Sassy pants from the start. 172930_822198964636_5636214_o

Growing next to her bear. 228047_921768651186_4979903_n

Those eyes.

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1st Halloween.

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Baby girl at her 1st birthday party. (Photo by Quinn Neely)

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Thug life.

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Sweet shades.
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Such a lady.

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Out to the ball game.

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Mmm… shrimp tempora.

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Glam.

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Just like Momma.

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Pigtails and Football.

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Smiles with Poppa.

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Playing in the kitchen.

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I can’t remember what we did on my daughter’s 1st birthday. I CAN’T remember and it’s KILLING me. I hate even admitting that. Now I remember her party all and well, but I’m so sad and sorry that I don’t remember her first big special day. However I do remember NOT writing her a birthday card, thinking that she was too young, and a million other reasons as to why it wasn’t necessary. But that also makes me super sad that I didn’t capture that moment in time by writing it down. So here’s a little note to my daughter, Makaila. Hopefully the internet is still around when she’s old enough to appreciate it.

Makaila Isabel-

Happy Birthday, Precious Girl! Tomorrow you turn 2 years old. I can’t believe that so much time has passed since the Lord gave you to us. You are simply amazing, and you have changed me forever. I’m so proud of the little girl you are, and the person that you are becoming. I want you to know how brilliant, kind, passionate, and beautiful I think you are. And funny! You make me laugh every single day, and that is maybe the most rewarding thing ever. You have enough sass to fill a room, and everyone loves watching you sing and dance and tell your elaborate stories, even if sometimes we can’t understand exactly what you’re saying. But you are speaking in full sentences now, which is just astonishing to me. Not necessarily because you can speak so well for your age (which you can) but watching a child turn into a little person is an amazing thing. And hearing you talk has recently made me realize that I’ve spent everyday for the past 2 years with someone who didn’t speak english. Basically. So now hearing you communicate in a whole different way is revealing an even more enchanting person than I ever expected. You are absolutely captivating.

Your Poppa and I pray for you every single day. That we would be able to love you in exactly the way that Christ wants us to, and that He would bring you to know Him. Sweet girl, if there is anything that I want in this world, it is for you and your brother to know Jesus. I know that I am not at all perfect, and that I will inevitably let you down in this life, but I do hope that I can point you towards the Lord. You already talk about Jesus all the time, which absolutely warms our hearts <;3 Keep at it, my little love.

Tonight, on the eve of your birthday, I have so many feelings about tomorrow. On one hand I’m so excited for you to be growing and learning all about the world around you. There will be few greater joys than watching you turn into a woman. But on the other hand, I’m already missing you being so small. It wasn’t that long ago that you refused to fall asleep anywhere but my chest. Had I known that once that ended that it would be gone forever, I don’t know that I would have let it go. Now if I try to put you to sleep, you just want to play with my hair and talk my ear off. Like a true girl. No more baby days for you.

I cherish your vulnerability. Sometimes you are in the middle of playing, and stop to come give me a kiss. Often times when I discipline a bad behavior, you hold out your arms and cry for a hug. Your little heart loves reconciliation, and I hope to foster that in you. And you already have the sweetest little manners. It warms my heart when I do something so simple for you, and it is received with a big and unexpected “Ooohhh, thank you, Momma!” Spending each day with you is the most rewarding thing that I could ask for.

I hope that your Poppa and I are able to make your birthday feel extra special, because YOU are special. I love you deeply and dearly, and I am beyond blessed to be your mother. You are not just my daughter and my friend, but an extension of my own heart, walking around this world. I will do my very best to protect you, love you, and direct you through it, as long as I can.

Love you to the moon and back.

-Momma.

I know I already said it once, but, MERRY CHRISTMAS!

I’m supposed to be napping right now, since child 2 woke me up at 5 am, which caused me to wake child 1 up at 6 am and get the Christmas ball rolling. Instead, I’m laying in bed watching my son’s chest rise and fall while he sleeps ever so peacefully, thinking about how absolutely blessed I am. In every way.

My body may hurt now, but God used it to give me an absolutely and wonderfully perfect daughter AND son. It’s Christmas day and I have THIS to look at…

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So fat and jolly …And then THIS little Miss, in her new hat…

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…AND I have this hottie husband, who currently is napping. And who makes it all possible.

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I’d say that there are worst things out there, but that kind of banter wouldn’t appropriately convey the depths of love that is permeating my heart right now. So I will just say that they amaze me, and I couldn’t ask for anything more.

But then God is like, hold up. I have SO MUCH MORE.

I have been given the most incredible community, both near and far, who use their gifts to bless my family and me beyond anything I feel the least bit worthy of. People using their money, skills, creativity, words, and presence to lavish out love on us. And I’m so grateful for that and for the depiction of Christ they are to me, to Kevin, and to our kids. Makaila and Cohen are growing up in an environment where Jesus’ love is beaming out onto them, and the only thing that means more to me than that, is Jesus himself. Which is the reason for celebrating this day, anyway. Wow. Emotional overload over here.

Along with Christmas comes a lot of expectations. There are things to do, people to see, and I can feel the weight of it all taking a toll my body. And I want to push myself, so that no one (including me) comes out disappointed. But having a chronic illness, my body doesn’t respond well at all to being “pushed.” So even though I’m sitting here with a headache, sore throat, and moderate body aches, I’m reminded on this day of my biggest blessing of all. The one that allows me to know that no matter how physically or emotionally broken and exhausted I may feel, I have a God who is there to give me joy, comfort, and strength. Even if that strength is mostly just within my spirit.

So again I say, Merry Christmas. I hope that you have many blessings to be celebrating today, too.

As Christmas day is quickly approaching, I’m thankful to be 99% done with all of my Christmas endeavors. Kevin is out doing some last-minute shopping (That’s a typical guy thing, right?) and is picking me up a few extra gift bags for the last 5 unwrapped gifts that we’ll be exchanging with family tomorrow. All the rest of the presents have been under the tree for a solid week, which has been a nice little reward for all the hard work that went into them. What usually happens is a frantic wrapping frenzy on Christmas Eve night, with me all awhile wondering why I’m working so hard for something that will be destroyed in 10 minutes the next morning. It was really nice being able to appreciate all the beautiful fruits of my labor under the tree for a change. 

Trying to be ahead of the game this year, the majority of my shopping happened back in October. Plus, a huge portion of that was online, which I’m always a big fan of. Here’s my 2nd shout out to Amazon.com. Holler. That worked out great for me, since stress plays a huge role in Lupus flares. And when it comes to holidays and me being a crazy person wanting everything to be perfect, I tend to get massively stressed. So mark one up to my productivity for once.

Unfortunately though, stress isn’t the only factor playing a part in my symptoms. Pretty soon here, I’m going to have to become much more strict in my eating habits. This is a completely foreign concept to me. As someone who has always eaten what I want, when I want, and stayed approximately 110 lbs, I’ve never been too concerned with “eating well.” Sure, we fill our fridge with organic, free range, grass-fed, all natural foods, but I have a crazy weakness when it comes to junk food. And “crazy weakness” is probably an under-exaggeration. Also, so is “junk.”

I’ve been on a Taco Bell kick for, I don’t know, about a year now. Ever since I got pregnant with Cohen. When that boy was in my belly, I could have ran for the border 3 times a day. Plus some. Cohen actually acquired the nickname “Chalupa” (aka “Chalups”) because of it. The weird thing is, while these cravings have subsided a bit, they sure as heck haven’t disappeared. So, after much begging and pleading both times, I ended up convincing Kevin to get me Taco Bell TWICE this week. Actually, two days in a row. Don’t judge me. On that third day I woke up and it had become apparent to me that I really pissed off my body. I was having some major skin flares, and had painful rashes sporadically all over my body. That was Saturday morning, and they are still making their unwelcome presence known. This crushed my hopes and dreams of being one of those lucky Lupines whose diet doesn’t really affect their disease. (I actually don’t know if those Lupines even exist, but…) Rather, I’m going to have to start being proactive in yet another arena of my Lupus life. That unfortunately devastatingly means, no more fatty, delicious, grilled stuffed burritos and the like. No more 4th meals. Insert super sad face.

Here comes the confusing part. Similar to so many other aspects of this disease, it seems that everyone is affected differently here. Meaning, I think I’ve read about every diet in the book as claiming it “works so well!” for people with Lupus. Raw diet, Paleo diet, eating for you blood type. I’ve read personal accounts of being dairy free, gluten-free, and sugar-free as being this certain individual’s key to remission. And because there has been no science to back up any real “Lupus Diet,” it seems that I’ll be entering into a (potentially long) season of trial and error.

There are some great things coming out of this though. Throughout all of this I’ve finally been able to acknowledge that food has been somewhat of an idol for me in my life. As I’ve grieved the thought of not having full freedom to stuff my face with all sorts of terrible things, I’ve become aware that this is just another way that the Lord will use to draw me closer to Him. I told Kevin that it’s very possible that Lupus might actually end up saving my life. Instead of constantly and continually filling up on crappy, should-be-called-faux-foods, I’m being forced to become aware of the effects that health and nutrition have on my life. And because of that, I very well may end up becoming an actual healthy person. Who would have thought?

So here’s to better choices and healthier lifestyles, and a very Merry Christmas to you and yours!

*I reserve the right to succumb to a piece of Christmas pie*

Adjusting to some of the big Lupus no-nos has been an, erm… well an adjustment. The biggest one, and I think for obvious reasons, is trying to stay out of the sun. It used to be a regular thing that I would take Makaila to the park behind our house, and we would swing and slide for as long as our little hearts desired. I only successfully ventured back to the park as a new mom-of-2 with Cohen in tow a handful of times before I got sick, and unfortunately we haven’t been back again (during daylight hours) since the appointment with my Rheumatologist.

We also have a membership to the Phoenix Zoo, which we would normally be all over now that the weather is cooler, but alas, that also has gone out the window. But it’s not all bad, and I am however super stoked to take the kids to Zoo Lights this year, but there is definitely a grieving over the loss of some of our favorite day-to-days. Staying indoors all the time tends to make us a bit stir crazy. Not to say I can’t ever take the kids to the park again- it’s just not the same pick-up-and-go thing that it used to be. Now it’s a sunscreen-infused, 20 minute tops, don’t-forget-the-long-sleeves-and-wide-brimmed-hat-or-else-you-might-die, thing. Which I have yet to brave, but perhaps I will soon.

And speaking of sunlight killing me, did I mention I also have to cut garlic out of my diet? Why is that you ask? Oh, well, because I’m a real life vampire. That’s my logical conclusion anyhow, because why else couldn’t I eat garlic or be exposed to the sun? According to the “scientific community,” since my already overly excited immune system would be stimulated more by the immune-boosting supplement that garlic is, the end results would be totally counterproductive. Thus a potential flare, yadda yadda yadda. Or so they say. Well played, doctors. Either way, I’m pretty dang sad about it. Garlic is in like, ev.er.y.thing, especially the way that my family and I eat, so that’s another difficult thing to get used to. That being said, if you know of a versatile herb or spice to cook with, or have a delicious garlic-free recipe, please do share! I’m running out of dinner ideas fast.

Some really great things have been happening though, too. A fun family tradition that we started some time ago, but that is becoming increasing dear to my heart, is a nighttime event we call “Pajama Walks.” A few times a week, after we’ve eaten dinner, brushed our teeth, and put on our pajamas, the 4 of our get bundled up and go out on an evening stroll before bed. This is a fabulous way for Kevin and me to unwind and engage with one another about our days, as well as get some (super) leisurely exercise. Lately our destination has been the park, which we can ALL enjoy because it’s DARK and no evil-UV rays are out to get me. Makaila goes down the “cool slide” as she calls it, and then begs for her Poppa to swing next to her on the swing set. I take pictures and we all laugh, and I get to feel normal. Like a regular wife and momma and not like that girl whose life got really complicated from an autoimmune disease. And that is a sweet, sweet thing. Recently we’ve been walking by the bay that our condo complex sits on, so that we can spend time staring at the Christmas lights reflecting off the water. And you KNOW I love that. Here are a couple photos from our last pajama walk.

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Jammies and boots. Stinkin’ adorable.

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And here is one of my drooly little blogging co-pilot tonight, just because he’s so dang cute.

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Another really great and normal-feeling thing happened today, and that was when I got to spend time with my lovely friend this afternoon. We watched a redboxed movie about preggos and babies, day drank a glass of wine, ate sugary snacks, and talked, all of which was essentially a celebration of the foundations of our friendship, whilst our 4 precious little ones napped. This is something (minus the day drinking) that used to happen regularly in our lives. I know it’s not the most monumental (or healthiest) sounding day ever, but it felt so liberating to just relax with my friend after being cooped up for the last couple months, aside from the small handful of well planned out outings and monday morning mom’s groups I’ve attended. Although I was pretty tired for having skipped what’s become a fairly regular nap time for me, it was so great to have such informal face time with my dear friend. Like the good ol’ days. Today really felt like tangible evidence that there will be normalcy again in my life. Sun or no sun. Garlic or no garlic. Vampire or not. Life doesn’t always have to feel so different. And although I totally trust the Lord and I believe I’ve come to terms with having a chronic illness, it’s really nice to feel like some things actually haven’t changed at all.

To say this week has been rough would be an understatement.

Last Friday I went and saw the dermatologist, and he removed 4 moles, as well as went over some new-to-me skin care directions. That was fine, and thankfully everything came back benign. Praise Jesus. But afterwards the spots were becoming more and more bothersome, which led me to do a little research. What I found is that people with Lupus are not only more susceptible to infections, but also that infections play a big role in bringing on flares. Had I known this, I probably would have avoided seeing the dermatologist even longer for the rest of my life. Mostly because I’d been avoiding it for about 10 years already, and I really would had taken any other excuses to continue doing so.

Then over the weekend and during the beginning of the week I was feeling pretty fatigued. Nothing that was totally game stopping, but enough to where I was weary that something may be around the corner. At my mom’s group Monday morning I had the ladies there pray for me, for healing and for protection against another debilitating flare up, because I was starting to feel off. By Tuesday afternoon I was really not doing great. I asked Kevin to grab me some lunch on his way home, hoping that if I ate something more significant than what I had the energy to prepare, I would be fine. Now this is where it starts to get blurry. I laid down to rest while the kids were asleep, and I remember waking up to eat and then promptly going back to bed. I was freezing, and when realizing that I probably shouldn’t be cold while under the covers in sweats and a hoodie, I found a thermometer and started taking my temp. Yep. I was officially running a fever. I know Makaila was awake by this time, and I’m not sure what Cohen was doing (that sounds bad, I know, but I assure you my husband had taken control here) so I decided I was SO cold, the only thing that would suffice was a hot shower. Turns out that was a really bad decision.

After what could have only been a few minutes in the shower, I felt far too weak to stand, so I sat down with my head rested against the wall. I was quickly becoming nauseated, and I remember just staring at Makaila’s toys, sprawled about the shower floor, trying to decide which one would be best at containing my vomint. My choices were a doll’s cup, a stacking cup, and a shovel. This couldn’t happen. I started pep talking myself. I couldn’t actually be this sick- I was simply being a drama queen. But when I became aware of the fact that I had been motionless on the ground having this debating with myself for at least 15 minutes, I started to get nervous. That’s probably when the pride kicked in and I forced myself to stand up, so I could wash my hair. Also a bad decision. I was so dizzy I felt like my head was going to explode, and having had just fainted in one of my best friend’s weddings back in April (real classy, I know) I knew not to push the boundaries. I had to get out of the hot shower to lay down, and quick. I didn’t have time to turn off the water or hardly take one step out before I gently, and purposefully, collapsed to the ground. I couldn’t make it to my bed; it was way too far.

I laid there and prayed that Kevin would walk into the bathroom and help me. I didn’t have the energy to call him. I’m not even sure how long I was there before he came in. Not that I had lost consciousness, but because time felt like it was standing still. When he finally came in and saw me though, he yelled at me. He sounded angry, but I knew he wasn’t. He was scared. And in as few words as possible, I let him know I was fine, I just needed help into bed.

I used the minuscule amount of energy I had to text a few friends to keep me in their prayers. It had only been a few hours since I started feeling gross, and it was looking like a trip to the ER was next in line. I had for the most part felt fine that morning, and now everything seemed to be spiraling out of control. I was still weak and dizzy, and my fever was now about 102. I took some Ibuprofen and went to sleep, but it wasn’t restful. I waking up about every 45 minutes, checking my temperature each time. 102.7, 102.1, 102.5. My plan was to alternate Tylenol and ibuprofen every four hours, and it had only been two hours when it obviously to me that the Ibuprofen was doing nothing. I needed this fever to come down. I kept telling myself that if this was going to be part of my life, we needed to learn how to handle it from home. We couldn’t go to the hospital every time I was getting fevers that weren’t coming down with medication. I couldn’t. Kevin made me soup and gave me water and Gatorade, and I forced them both down and went back to bed.

About an hour after I dosed with Tylenol, I woke up with a temp of 103.5. Kevin told me it was time to go to the ER, and I pleaded with him to let me try to strip the covers from myself first and see what happened. He complied, and brought me cold rags to put basically all over my body. At 1AM I woke up in a bed that was completely soaked, but I couldn’t have cared less because my temp was down to 99.5. (I know I said this was all blurry, and I swear I’m not lying. The only reason I know these details is because of text message updates that my friends were demanding.) The weird thing was that my face was feeling really tingly, so I went to look in the mirror, and I discovered that my lip and right eye had become really swollen. Like, looks-like-she-had-a-botched-up-Botox-procedure, swollen. Perfect. The only thing I could rationalize was that it was a reaction to the Tylenol, since everything else I had taken or eaten was pretty much part of my day-to-day. Whatever. My fever was gone and that was what mattered the most… Until I woke up the next morning, with a fever of 103.5.

All day Wednesday I continued to waver between 101 and 103.5. I felt like death. Still in and out of sleep, not leaving my bed, but lucky enough to have had Kevin stay home to continue taking care of me and the kids. We have to learn to do this. We can handle this from home, I kept telling myself.

There were points where I was so far gone that I thought my name was Kansas Stables. I’m not even joking. I was “dreaming” (hallucinating? I’m not sure..) about my Facebook posts as this Kansas person. There were other times when I thought I was dying. I came to the conclusion that maybe God didn’t in fact want me to be suffering well, but instead to die gracefully. That could be the answer. BUT THEN, I realized that amongst the all over achy-ness of my whole body, there was a significant, very specific pain I was having. Oh crap. It wasn’t (or wasn’t just) my healing derm wounds making me sick. I had freaking Mastitis. Not only is that something that knocks a regular woman to the ground, but for someone with an over enthusiastic immune system, the constant high fevers and all over awfulness started to make sense.

The one amazing thing about this is that my OB, who totally has my back and is a fellow Lupine, called me in a prescription immediately after I phoned her office to explain my symptoms. Thank the Lord, because I really didn’t want to leave the house with a still-swollen face that gave off the impression I had gotten into a bar fight the night before. I started on some antibiotics that afternoon, and by 8 o’clock Wednesday evening my temp was FINALLY down to 100, and continued to decline until I was feeling so.much.better. It was over, and what may have been a longer and more difficult process because of it, we had successfully avoided the Emergency Room and I had recovered at home. Hallelujah.

By Thursday morning I actually felt like a real, functioning human again. I was scared that the antiboiotics or the infection (or both) would trigger a flare, but so far so good. And the thing about feeling good again is that I am 1,000x more grateful than I ever have been to get over a sickness. God is using Lupus to help me really experience my life. Maybe a big piece in that is now I have two amazing, little extensions of my husband and myself that I get to hang out with everyday. Being near-unconscious made me feel like I literally lost 2 days of my life, but worse than that, I felt like I lost 2 days of my kids’ lives. Of our family’s life.

Snuggling my son and actually being present while I held him and he stared into my eyes. Watching my fantastically spirited daughter as she laughed and sang her heart out over breakfast. Experiencing these things Thursday morning made me grieve the fact that I hadn’t witnessed them in 48 hours, but then it made me really rejoice that I was able to soak up our moments together again. And to top it off, I came to with a new appreciation of my amazingly caring, compassionate, and rock star of a husband, who took care of all 3 of us while I was down for the count. As if he doesn’t have enough on his plate already! While taking all of this in, it overwhelmed me. I am so grateful. Imagining what it would be like to be mad at my body for turning against me, or angry at God for my disease has made me become ever so grateful that instead Jesus is gracious enough to be teaching me how to be appreciate life in the midst of my sickness. Talk about faithfulness. Now as I’m learning how to deal with a life with Lupus, I’m praying that this is the lesson I keep closest to my heart.

My brain has been so foggy lately, I feel like I’ve lost my mind. And it was never great to begin with, so that means it’s really, really bad now. At first I just thought it was your run of the mill “baby brain” that I’ve been dealing with for roughly the past two and half years, but was annoyed that it seemed worse now than ever. Then I learned that “Lupus Fog” is actually a thing.

I’ve been doing stupid things ALL THE TIME. Corn Pops in the refrigerator, eggnog in the cupboard (noteworthy: these were separate occasions. I don’t put eggnog on my cereal. Although that would probably be delicious, so maybe I should.) I can’t tell you how much food I’ve had to toss out because I’ve simply forgot to put it back in the fridge. Frustrating. Misplacing things constantly, losing track of what I’m doing and when events occurred, forgetting how to spell things, not being able to communicate in the way I want because I’m unable to think of the exact terms I’m looking for, etc etc. Now this can be funny when it happens once in a while, but it has started to feel mentally debilitating. Sometimes I have things to say, and I just don’t say them, because I know I won’t be able to form coherent thoughts. I have always prided myself on being an educated, communicative, articulate person, and that seems to being going out the window. “Oh, what’s that you say? Pride? Let me take that for you so you can find your identity in ME ” -GOD. Actually, I’ve been meaning to Google, “things to help with Lupus brain fog” for probably a week now, and I keep forgetting… Way to kick me while I’m down, Lupus.

So since my brain is as foggy as a 90’s movie murder scene, here are some random tidbits that have been wandering through my mind recently. Hopefully this post ends up less messy than said 90’s movie murder scene.

The house is done and decorated for Christmas, and it makes me so very very happy. But there is one thing that Kevin and I are bummed about, that just makes things feel… off. That’s our nativity set. I adored playing with the little ceramic pieces of my mother’s when I was growing up, and I think having one of our own is not only fun for the kids, but provides important teaching moments for them as well. However, the people in our Nativity scene are whiter than a piece of freaking Wonder Bread. The set is beautiful, but unfortunately when Kevin and I pulled it out this year, we felt like it’s more of a testament to western society’s egocentric mindset rather than a helpful learning tool for Makaila and Cohen. The portrayal of Jesus (in particular) and the men and women in the Bible as Caucasian has always been something that has really bothered my husband and me. How did anybody start this in good conscience?! Jesus was not White! I looked for a solid 2 days online for “culturally correct nativity sets,” but to no avail. They either don’t exist in America, or they’re just ridiculously hard to come by. And trust me, I used every relevant phrase and wording I could think of. So, out of desperation, I took one of Makaila’s Crayola Crayons to Mary’s face (insert apology to my mother-in-law who gave us the set) in hopes to give a more accurate depiction of what a woman living in Israel 2000 years ago looked like. That attempt was also unsuccessful, and now I defaced Mary for nothing (insert apology to Jesus for dissing his mom.) Kevin says now it looks like Mary has a beard, so I’m really open to suggestions from here on out.

Speaking of White people, I’m becoming whiter and whiter by the day. I understand that this always happens to an extent as we enter into the winter season, but this “no sun exposure” thing is no joke, and I’m afraid this will end unfavorably. I mean, is it possible to become translucent? Like a fetus? Because I’m basically getting the equivalent amount of sunlight as a fetus does. Now I’m going to have to buy all new makeup, and that ain’t cheap. Too bad crayons don’t in fact darken skin tone.

My hands and wrists have hurt worse the past 2 days than they have hurt in a long time. That’s not a good sign, as my Rhuemy said if I’m taking ibuprofen more than 2x a week by the time I have my appt in February, he’ll start me on a Rx for the pain. I’m really trying to avoid that, since Cohen will still be going strong on the liquid gold at that time, and I have no desire to cut that short. So hopefully this dies down soon. And actually, resting my wrist on the end of the keyboard is killing me right now, so I feel like that’s enough of an excuse to end right here and get to bed at a somewhat decent hour. I’m out.

Today is the day that I get to sit down and enjoy leftover-turkey sandwiches, which means it is officially my favorite time of year. We’re in Christmas territory now, people! Yesterday we were intentional about taking some pictures to document the holiday, but more so in hopes of getting a few good photos for our greeting card this year. Turns out getting 4 people’s faces to look halfway decent at the same time is near impossible. Maybe we’ll just send out a picture of the dog…

Here are a few of the gems from Thanksgiving day.

Kevin was scared she was going to roll her ankle, but I couldn’t NOT take pictures.

 

Poor Cohen. Already tired from his sister’s shenanigans.

Black Friday is quickly becoming one of my favorite holidays. In my old age I’ve noticed that I get much too impatient and too frazzled when in crowded public areas. In all fairness, this probably has something to do with pushing a double stroller containing 2 easily overstimulated children through spaces that wouldn’t fit the average American. So, unless there is a life-changing sale on something I HAVE TO HAVE, I am just fine skipping the Black Friday madness. Plus, I’ve become perfectly happy with shopping online (holler, Amazon Mom) where I don’t have to ask Makaila to calm down 1,000 times, much less put on a bra. Real life.

Instead, the past few years we’ve made it a tradition where we use the day after Thanksgiving to turn our home into a Winter Wonderland. Just our little family of four, listening to christmas music, eating all things candy cane-flavored, watching claymation Christmas movies, and decorating the house. I’ve found this necessary as an Arizona resident, because if you wait for it to feel like Christmas, you may miss the holiday altogether. For example, today in Scottsdale we had a high of 82 degrees. Snow fairies don’t visit the valley of the sun. So for this reason, I decided it’s best if we pick a day to start the celebration, and go with it. That way, despite what the weather feels like outside, inside our home it will feel like Christmas.

I have been looking forward to this day for weeks, but much to my disappointment, it started out rather rough. I woke up this morning to Makaila crying an hour earlier than she usually wakes up. I have been feeling incredibly fatigued lately, especially in the mornings, and unfortunately today wasn’t an exception. I was so exhausted that I couldn’t even begin to lift my head off my pillow, and was ever-so-thankful when Kevin got up to get her. An hour later Cohen started crying, and I’m pretty sure I nursed him without opening my eyes or removing the extra pillow from off my face. It was almost 9 o’clock before my pure desire to start our Christmas kick-off got me out of bed. But I was dragging, and my head hurt, and my hands were aching, and I don’t think I even made it an hour before I climbed back under the covers. In fact, I only got half way through preparing a pot of coffee before I gave up. I was that tired. Thank the Lord for Kevin being home on Fall Break.

When I did wake up, I was ready for a do-over to the day. I turned on the Bing Crosby holiday station on Pandora, and put on my reindeer pajama pants. I threw some eggnog in my coffee, choked down 600 mg of Ibuprofen, and was ready to spew Christmas all over our house. And I loved every second of it.

If it isn’t obvious by now, I’m one of those Christmas-obsessed persons. I know not everyone feels this way, but I’m pretty sure there is a pill you can take for that. I’m especially enjoying the wonder in my daughter’s eyes as she is old enough this year to appreciate what’s happening. We got out her Christmas book from last year and read together about how Christmas is a celebration of Jesus’ birthday. Having just had 3 birthdays of family members last month, that is a particularly exciting aspect of the holiday for her. She’s loving everything about Christmas so far. Like mother, like daughter. Phrases I heard frequently around the house today were, “Happy Burtday, Jesus!” *waving at the decorations* “Hiiiii Cwismiss!” And when Rocky would bark at our neighbors outside she would exclaim, “Cwismiss is coming!!!” Not too sure she’s grasping that concept yet… A not-so-cute one, that Kevin and I can take full responsibility for is, “More Eddnog! More Eddnog, PEASE!” What can I say? The Furmans like their eggnog. I even caught her helping herself to some in the fridge. Which isn’t hard, because we have FOUR cartons in there. No joke. Shamrock eggnog, Lactose-free eggnog, Coconut milk “Nog” and Soy Nog. We may have a problem…

The tree is up and I’m basking in its twinkling lights as I write. Hopefully they have a low UV output?  The house isn’t finished, and that’s OK. My limited energy may turn this into a weekend long Winter Palooza instead of a one day holiday frenzy. But who can be mad about that? I’m resting tonight in gratitude to be entering into another Christmas season with my loved ones.

Despite Lupus

Sometimes life includes an autoimmune disease. And sometimes people respond in funny ways.

Practical Theology for Women

Sometimes life includes an autoimmune disease. And sometimes people respond in funny ways.

Femina

Sometimes life includes an autoimmune disease. And sometimes people respond in funny ways.

Sometimes life includes an autoimmune disease. And sometimes people respond in funny ways.