Guest Blogging!

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!

Gifts & Gratitude.

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…

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

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

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.

Vampire Diaries

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.

Jammies and boots. Stinkin’ adorable.

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

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.

I’ll take you to foggy London town, ’cause you’re my little gentleman.

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.

Worst Week Ever.

I keep reflecting on something my BFF had said this past weekend. Her words were, “This week is one for the books. Probably the worst week ever.”

There is a lot of truth in that, and I know exactly why she said it. You see, we have always had a unique friendship where we are able (or cursed?) to experience the other one’s pain, both emotionally and physically. Weird, but true. And because both of us received bad news this week, we are grieving not only our own losses, but each other’s. Which in turn has formed this relentless tsunami of grief, leaving behind gaping holes in both our hearts.

It started when my beautiful friend miscarried at 9 weeks pregnant. Some people may be just finding out they’re pregnant at 9 weeks, but we had already known for 5 full weeks that she was with-child. She texted me the minute she got the results of the test. She even texted me the night before she took the test, so I waited by my phone on bated breath to hear from her, and rejoiced with her when she got that long awaited “Positive.” We were oh-so-happy. My dear friend now has 2 angel babies waiting for her in heaven. 

Then, the very next day, I found out that I had Lupus. It doesn’t get much worse than finding out that your body has turned against itself, and that there is no cure to make it stop. Hey, your body hates you. Here’s some stuff to do to make it less mad. Have a nice day. Stuuuupid.

THEN my friend’s and my football team, the Oregon Ducks, went ahead and freaking lost to Stanford. With a ranking of #1 in the nation within our grasp, we dropped down to #5, and now only have a tiny glimmer of hope for a shot at the National Championship. I know that may seem trivial in light of the other stuff, but it certainly doesn’t help.

Please just let it be Tuesday before anything else life-altering happens. Thank you.

Adults say the darndest things.

The inspiration behind the title of my blog, “Oh, my aunt has Lupus” is that this is verbatim the reaction I get from others 9 times out of 10 when the topic of my health comes up. I’m not sure why this always seems to others as the most appropriate response, but it does. And also, apparently a lot of aunts out there have Lupus.

It started before the doctor even told me I had Lupus. That’s how bad it is.

The first time it happened was with an online community of mom’s that I’m a part of. (I know, I know, I’m sorry to be that guy who is a part of online forums. Except I’m not sorry.) Anyway, they have been virtually walking along side of me as my obviously-out-of-whack body made itself known for some time now. Then, when Lupus all of a sudden got put on the table by my doctor, it happened. At least 3 of the ladies in this group told me their own aunts had Lupus, and that their aunts were able to lead fairly normal and full lives. This was extremely comforting to me in a time of such scary unknowns. Invaluable, in fact. But as the threat of Lupus became more and more likely, and eventually a reality, it didn’t stop.

I get it. You are trying to relate, sympathize, encourage, or awkwardly small talk around the fact I just told you I am a diseased-person. And sometimes people have great relationships with these aunts and can offer real advice and condolences, because they personally have been impacted by the struggle of their loved one suffering through this disease. But more often, their input into the conversation abruptly stops after that inevitable, “Oh, my aunt has Lupus.” comment. Really? How is she? How long has she had it? “Oh, I’m not sure. I think she got it from a tanning bed… or something.”

No. No she didn’t.

An Answer To A Problem Is Not Always A Solution.

I started feeling sick a couple of weeks after my son, Cohen, was born. Nothing big, just felt like I had a sore throat. A persistent one, that Would.Not.Go.Away. So I took the plunge and finally scheduled an appointment with my primary care physician, after my student-doctor-of-a-husband begged me to. I have always hated going to the doctor, and find it unnecessary to pay for some guy (or gal) to tell me to drink more fluids and get lots of rest. Thanks, doc. But I did it anyway to appease my husband, and really, I didn’t want to get my just-out-of-the-womb baby boy sick, nor my wild 20 month old daughter, especially if it was  (doubtfully) something I needed a prescription for. So I took one for the team and dragged my prideful self into the doctor’s office, feeling rather silly for likely wasting both my and my doctor’s time over a measly sore throat.

Fast forward 6 weeks…

“You have enough right now for a Lupus diagnosis.”

Kevin and I are sitting in the exam room at the Rheumatologist’s office, both of the kids in tow. Dr. C explains that he can say with confidence that I have an autoimmune disease, called Lupus. Essentially, my body cannot tell the difference between unhealthy cells, that it should be fighting off, and my own, perfectly healthy and productive cells. So it just attacks them all. There was our answer as to why I have been having severe joint pain, rashes, bruising, headaches, fevers, fatigue, and the like. He said it seems to only be impacting my musculoskeletal system, which means time is on our side. It also means, he tells me, that I need to eliminate my sun exposure and wear an SPF of at least 70, everyday.

Whaaa? Let’s be realistic here. After all, we live in Arizona. “What exactly do you mean by ‘eliminate'” I ask him. “To what extent?” 100%. Forever. Is my answer.

He says he is going to take another blood panel, and tells me that Lupus patients commonly carry an antibody that causes 2nd trimester miscarriages and heart defects in a fetus, and knowing if I am a carrier or not will determine if we will ever safely get pregnant again. He says they will let me know in about a week if I do in fact have that ANA.

The rest of the appointment is a complete blur, as my mind is on overdrive, trying to process everything the doctor had told me. Dr. C asks if we have any questions; we say no and he leaves. While waiting for my blood to be drawn I think of 1,000,000,000,000 questions. How the heck do you even life your life with a disease like this? Of course, none of my questions will be answered until my follow-up with Dr. C in 3 months, so all I can do in the lobby is repeat to myself, “Lord, if you want to use a disease in my life to bring glory to Yourself, I am OK with that. A diagnosis doesn’t change who I am in Christ.” 

But, it is going to change a lot of other things in my life. Including, but by far not limited to: taking up blogging to help me process through all of this, putting an end to my love affair with the sun, and getting familiar with spending an absurd amount of money on fashionable decent looking hats and super-strength sunscreen.

At least my skin will thank me when I’m 40.