Here’s the part where I stand at the podium and do that droning about the people who helped me come all this way. But wait! Here’s why it’s important for everyone to read: because it’s about being kind.
When Craig started talking seriously with me about selling my work, I reached out to my blogging community for advice on how to run a business online, on how to blog better, on everything. I did not know how to get my tangible art work to a place where I could improve it, make it a digital entity, send it to print, and hold it in my hand, proud of the quality of it in every aspect.
It seems simple, but there’s a lot more to it than just scanning and clicking a Print button. There was a lot of nonsense about “digitization” and “vectorizing” which gave me bad headache for many, many a moon. And since I only ever took an intro to digital media class in college because I was all “fine” and “artsy” with my great many pencils and my lovely papers and enormous art boards I was hauling around all the time, this stuff was hard for my mind to bend around. It was like hammering hot iron, which I have done before, and… it’s a workout. And there they were, the whole time, those digital art kids, with a little laptop containing the keys to the kingdom of arts, just sashaying through campus just because they could. I’m not bitter in hindsight, not at all. I love that I always take the difficult road. I’m dumb like that.
People are busy, and there’s a lot to learn, overwhelmingly, a lot. The people who took the moments out of their day to respond to my emails or text messages to say “here’s how I did it, here are links, are you connected with xyz group?”, or even “how is it going?” really just blew my mind. They gave freely the knowledge they likely had to stand and bang their heads against a wall (or a keyboard) to obtain. Their advice helped me to develop my own ideas more fully. Katrina, Heather, and, Erica: thank you for your encouragement and help. You gals are A+ peeps.
Also: A very long time ago, I posted a “contribute” button on my blog to raise money so that I could host my own blog, with the eventual goal of opening a business. At that time, we suffered financial struggles– we actually didn’t give our kids Christmas gifts that year (it was Lexington and Baby Emmett). There were people who contributed. I raised just enough to purchase what I needed to start this blog. I know who you are- thank you for helping me make a dream into a reality.
That’s it for now. Come to my Etsy shop. Share it with your people. I’ve got great plans and lots of work to do!
Hug your loved ones this 9/11 weekend.
We came home from Florida and now I understand why people take multiple vacations a year. I’m not a cryer. I’m actually kind of emotionally dry, except I found myself CRYING to sleep, and drinking my coffee in between sobs as I looked out of the window the next morning at the not beach. I’m kind of shocked about this “post-vacation-blues” phenomenon, but I hear it’s a completely normal and short-lived thing. So, laundry goes on.
The week we got back to Ohio, I finally, finally, finally met with my rheumatologist and was tested. I’d been waiting two months for this appointment.
I have a debilitating autoimmune disease called Ankylosing Spondylitis.
It’s genetic and there is no cure. It’s a form of arthritis, but not the kind people get because they’re just getting old. In fact, I’ve been (unknowingly) having the symptoms of this since I was 15. It’s pronounced “ANK-yuh-low-sing SPON-d’yuh-lite-us”
Pros: It isn’t affecting my hands, like Rheumatoid Arthritis can, though I do have carpal tunnel that comes and goes. If I lost my hands… let’s just say it would be the quickest way to sainthood for me.
Cons: It affects my spine, my neck, my hips, my legs, my feet. My feet have been the guys who are showing the most outward signs. Other than that, I look perfectly normal and healthy, except that I limp a little, and my usual speedwalking is …not.
I’ve spent the week similar to how I spent the days after Emmett’s Autism diagnosis: grieving in a bizarre way; reading reading reading anything and everything I can about the Ankylosing Spondylitis, connecting the dots of my life that never made sense and now suddenly do, discovering mental turmoil that’s been stewing in my head for years.
“What’s wrong with you? Get up! Why can’t you just GET UP! It’s mind over matter. Choose to get up.”
“Don’t be lazy, just go. Why can everyone else do this and you can’t? You’re a very lazy person. “
“If you exercise, you’ll get better. Yes, you always feel worse afterward, but that means you need it, right?”
“Everyone has problems, everyone has pains. Stop worrying about your own littleness in the world and get things done. Just get it done!”
And then I note the times I’ve been exhausted by MERELY SHOWERING, and watching as I frustrate others because I move so slowly. “Just go, I’ll finish up and meet you there. Don’t wait for me.”
That’s what all of this has been. Im not sad, I’m relieved that it’s not just me. I mean, it IS me, but now I understand why I’ve always been tired, slow Carolyn, and why it’s now worse than ever.
I have cried in anger, weeks ago when everything seemed to reach a summit of hurt and inability, after having to lift my own leg into my underwear; I shook my fists, demanding through tears WHAT IS WRONG WITH ME!? I’ve asked that question multiple times over the years.
So now, it’s like, okay: this is wrong with me…
and this, and this, and this…. and this has been happening to me since I was 15 years old.
So I’ve spent 16 years in varying forms of chronic pain and exhaustion, believing I was just a very, very lazy person, believing I wasn’t doing it right. I was going to confession, confessing my sins of sloth, of laziness, of failing to do my duties as a wife, a mother, a member of society, thinking it’s merely a battle of the will– but in truth, I’VE. BEEN. SICK.
The whole time.
–Now, now, now, cool it.
I’m not a saintly sufferer, here. Yes, I AM lazy. Yes, I have too often failed to be dutiful, to use my time wisely, to be more purposeful in life. I’m well aware of the times I’ve chosen not to do what I knew I had the energy for.
But I’m also sick.
I’m trying to sort out what’s real and whats really been my illness screaming at me all along.
But I’m trying to be more gentle on myself.
Searching Ankylosing Spondylitis on Pinterest brings up a myriad of memes playing to the sympathies of people who suffer chronic pain- and it’s enabling in the sense of allowing people to cling to their own miseries like a teddy bear. While Pinterest actually has a lot more info on ankylosing spondylitis than simply googling, the memes really send out a bitter message for people who suffer stuff like this.
I don’t care if other people don’t understand what my pain feels like, or that I have to recover the next day after grocery shopping, or that I’m confident I’ll never be a soccer mom because I can’t handle the energy it takes to prepare to leave the house except for the weekends (and that’s to grocery shop).
No one can really know how I feel on a day to day basis, and it’s not anyone’s job except a doctor’s. job. (Oh grammar.) —But I do care about forgiving myself for the ways I’ve previously thought I’d failed at being a human being.
AND AND AND! I do care about my ever-renewing understanding about the human person, the increasing compassion I’m experiencing for others, and the increasing hesitation I feel to pass judgement about other people, except concerning spiritual wellness and where the two intersect, of course.
I am of course keeping this mentality from a previous post at the forefront of my mind, offering it up. Trying to see the Heavenly picture in all of this.
I’m in a limbo area: Trying to figure out what is best for me, and still wanting a second opinion. The side effects of the medication I’m “supposed” to take are really, really terrible. Like cancer terrible, or abortifacient terrible, or infection terrible.
I have altered my diet. I’ve always avoided HFCS, and partially hydrogenated oils, and soy, and artificial sweeteners, and low-fat / sugar-free anythings because I know they’re filled with artificial wizardry.
Over the spring, motivated to help Emmett’s gut heal, I learned to make bone broths and ferment vegetables. I make my own kombucha. I don’t drink milk.
I limit my grains, but haven’t totally cut them out.
I limit gluten, but haven’t cut it out entirely.
I eat mostly whole fat goat milk yogurt & nuts, avocados, bone broth meals, some meat, seafood and steamed veggies.
I was taking a strong pro+prebiotic with complimentary supplements, plus a good whole food multivitamin.
I just started codliver oil.
Essential oils, while I love them, enjoy them, and have even been selling them for over a year, are a joke for anything pain/inflammation related.
I’ve been doing this for over a year, and cracked down hard on it months ago… And my symptoms are only escalating. There’s still a lot I could be doing, diet-wise, but frankly, standing in the kitchen cooking and chopping and straining has become yet another thing I hate doing. It hurts to stand, of course. I used to love baking and cooking.
So I feel like I have no options except to try this TNF inhibitor. Which is really risky, in my opinion, and apparently doesn’t last in effectiveness, so I’ve read.
We went! We did it! We’ve been married for 7.5 years and took our first family vacation this month, with Craig’s family. I also made my first attempt at taking beach portraits– like with a real camera and a tripod. Be gentle ;)
It wouldn’t be a true portrait session without the one child who “can’t stop cryingggg-g-g!”
And Emmett ended up changing shirts because the white polo gave him the “NO CHURCH!” wailings.
We stayed in a gorgeous beachfront house.
I have to say it set the bar for future vacations so high that I fear all future trips will be a disappointment. I saved a few of my Snapchat stories documenting the interior, as well as my variety of poorly done accents, to share here, if you’re inclined. (Sorry! I’ve had to go private because a few people started taking screenshots of weird things that only made sense if you’re a creep, sooooo. Bye.)
The belly which scrupulous eyes might note is steroidal(see below) bloat. Promise.
It took all of 1 morning for me to instantly love waking up to the smells of coffee already brewing and Grandma Cook happy to love on my grumpy children for me to sense that parting 8 days later would be all sorrow, and zero sweetness.
Craig and I got a chance to escape for a date while the boys stayed with Craig’s mom and grandmother. (Craig’s work, always calling at the most inconvenient moment.)
The paradox? I didn’t want to go.
Traveling anywhere with multiple children, no matter who you are is:
1. A circus.
2. A circus.
3. A circus.
–Well, I had some anxiety about going on vacation. Just some. (SARCASM. LOTS.)
But, the week before we went, I called the doctor I’ve been working with. After discerning with my husband and family, we decided to have my prescriptions for steroids and a mild pain medication filled.
I started the steroids during the 12 hour drive. We stayed the night at a hotel in Alabama, and upon our Florida arrival the second day, I noticed I was sliding in and out of the car with an ease I’ve not experienced IN MONTHS.
I was able to fully enjoy our vacation, walk, bend down, hold our children, wade in the water, swim, and climb the 3 levels of the house with pain at a level lower than I’ve experienced in months.
We celebrated Lexington’s 7th birthday that week. I could tell he truly loved taking in the vastness of the ocean.
This isn’t a fun post. Sorry.
I’ve considered the usefulness of writing about this, and have been certain I’d never mention it. But it’s nagged me for a while and the reasons I’ve gleaned FOR writing, in my opinion, outweigh that keeping-personal-things-personal.
I’m not in the best of health.
The maddening thing about it is that no one knows what’s wrong with me.
I’ve had chronic pain since the 8th grade (and you’d never know it; I was an all-star athlete) but ever so slowly, new areas of pain have cropped up over the years. Last October was the first time I was in so much pain that I could barely walk.
I leaned on my grocery cart for support while limping through the store, and held onto furniture as I fumbled around the house tending to my four little boys.
Since October, different areas of pain have bounced around my body rendering me completely useless in the area of housekeeping. Although it’s never been my strong suit, one might now imagine how the laundry situation looks with 4 children in my wake. My husband has shouldered much of the tidying on the weekends. My mom comes once a week to help/give me a break.
I’m currently in limbo as a I wait to be seen in June by a rheumatologist who will do more blood testing, but so far, the only thing I’ve heard mention is Gout. WHAT 31 year old has arthritis??
Personally, Dr. Google and I have narrowed it down to a few other suspects: Fibromyalgia, Endometriosis, and Systemic yeast overgrowth (which actually is closely linked to the latter two, as well as gout and other arthritic conditions.)
My family thinks its just in my foot. But it’s all over. I’ve been seeing foot specialists because the medical system can’t handle more than one area of pain at a time and they make you schedule different appointments with different doctors based off of which part of your body is giving you a problem, and they don’t seem to enjoy connecting how the body is more of a whole than a bunch of separate parts. but whatever. I’m bitter, and I’m not a body part specialist.
And who knows, maybe there’s nothing wrong and my body is swelling in different places and I’m hobbling around because it’s all in my head and I’m crazy. And if you make it to the end of this post, I’m pretty sure that will be your conclusion too. Post over! Bye.
Okay, so there’s that information about me. I really didn’t want to share it. Why didn’t the blogger want to overshare? (That sounds like the beginning of a social media joke.)
Because this is what I fear spectators will say:
“It’s from having all those kids so close together!”
Maybe. Maybe it is. Maybe I’m breaking under the yoke of 4 little boys.
Diagnosis: TOO MANY KIDS.
Okay, who would you have me return in exchange for the ability to run a 5k (because obviously the choice is clear: Have too many kids or run marathons.)?
Second, I only have 4 kids. Not 8. Four children is not a big deal at all. Four! It’s a laugh. The spacing between them is 2 years on average.
But likely? I knew this was coming.
I believe what I am experiencing is a mix of genetics, environmental toxicity, and not being more self-aware.
If I’d seen a doctor and had my vitamin/mineral levels checked for deficiencies, had my blood tested properly for thyroid issues when I was in eighth grade and falling asleep in class unnaturally exhausted, and suffering chronic neck pain, perhaps I would not be where I am today.
If I had cut out gluten the day it occurred to me that perhaps it’s what makes me feel like I’ve been hit by a truck when I wake up, perhaps I’d not be counting down the hours until I can take my next round of Advil.
But I didn’t know any of that. I didn’t know.
Okay, so let’s get over the possible cause of my problems and move on to a deeper level:
the topic of pain.
Every specialist I’ve ever seen asks me the same question: On a scale of 1-10 what is your level of pain?
My answer is always, “… not giving birth?”
Because on a scale of 1-10, 1Billion would be giving birth, and anything under that is, in my opinion, paper cuts.
But then those paper cuts are constant, and by the hundreds, and they interfere with your ability to think, to function, do normal things that you’d never thought twice about; like bending down to change a baby’s diaper, like dropping something and picking it up, like making a quick errand, like getting out of bed in the morning. I just spent two weeks waking up, afraid to move from the pain that would follow, and having to lay there and stretch for up to 45 minutes BEFORE I COULD EVEN SIT UP.
So yeah, no, this pain is not that shocking equivalent to losing a limb or giving birth, but more like someone taking a hacksaw to your leg, your toe, your foot, your back, your neck, and giving it a good tug every few minutes, every single day, every single night. Sometimes, that hacksaw is merely the sheets gently brushing an area of skin.
I don’t want prescription pain medication. Forgive me a little conceit when I say I’m smart enough to know that pain medication isn’t fixing my problem.
“yeah, but it helps you get through the day until you do.” I have been told countlessly. Okay, but more important to me is that I fear addiction. I have personally witnessed addiction to simple pain meds, and I have seen what it does to family. I won’t be counted among that.
Here we are! Here’s the whole point of this post:
Don’t waste your pain.
We live in a time where people believe that needlessly suffering is unthinkable. People need to be in comfort at all times.
I feel that if people in pain knew that they could use their pain as a weapon, as a way to bring others to Christ, they’d opt for it more.
[Here’s where you can scroll down to the bottom to read the “Too Long Didn’t Read Version”]
Uh…yikes, Carolyn. That’s a little, um. masochistic.
I know how it sounds at first. I do. It sounds like I’ve lost my marbles.
But I’m not the first person to think about pain like this. In fact, while looking up writings from the Bible and the saints about human suffering, I landed right in the lap of my patron saint: John Paul The Great.
Of course, you funny guy. OF COURSE YOU WROTE EXTENSIVELY ABOUT THIS and of course I’m reading it right now when I need to.
St. JPII used the Bible as the main foundation for his letter, and expanded his thinking, which of course perfectly aligns with Catholic teaching.
Basically, JPII says it’s natural to look to God and say “WHY!? Why me? Why that person? WHY SUFFERING AT ALL?”
JPII blasts away the stereotypical outsider opinion that Christians believe they suffer because they have sinned. “It is not true that all suffering is a consequence of a fault and has the nature of a punishment. […] but first and foremost [because] it creates the possibility of rebuilding the goodness in the subject who suffers. […] Its (Suffering) purpose is also to strengthen goodness both in man himself and in his relationships with others and especially with God.”
JPII acknowledges that the “why” for suffering is a mystery, BUT! Lucky us, (and poor Job) it is because of Christ that we can grasp the meaning of it:
In order to discover the profound meaning of suffering, following the revealed word of God, we must open ourselves wide to the human subject in his manifold potentiality. We must above all accept the light of Revelation not only insofar as it expresses the transcendent order of justice but also insofar as it illuminates this order with Love, as the definitive source of everything that exists. Love is: also the fullest source of the answer to the question of the meaning of suffering. This answer has been given by God to man in the Cross of Jesus Christ.
If you didn’t get that (I had to read it 3 times over), basically, it means: The answer to suffering is in love. We’re talking the love that caused God to send his only begotten Son into the world, knowing that by His holy and innocent son’s suffering and dying on the Cross, silly, not-so-innocent people like me will be able to see His awesome face when the time comes.
PJII explains further:
As a result of Christ’s salvific work [suffering and dying on the Cross], man exists on earth with the hope of eternal life and holiness. And even though the victory over sin and death achieved by Christ in his Cross and Resurrection does not abolish temporal suffering from human life, nor free from suffering the whole historical dimension of human existence, it nevertheless throws a new light upon this dimension and upon every suffering: the light of salvation. This is the light of the Gospel, that is, of the Good News. At the heart of this light is the truth expounded in the conversation with Nicodemus: “For God so loved the world that he gave his only Son”(31). This truth radically changes the picture of man’s history and his earthly situation: in spite of the sin that took root in this history both as an original inheritance and as the “sin of the world” and as the sum of personal sins, God the Father has loved the only-begotten Son, that is, he loves him in a lasting way; and then in time, precisely through this all-surpassing love, he “gives” this Son, that he may strike at the very roots of human evil and thus draw close in a salvific way to the whole world of suffering in which man shares.
Christ died on the Cross in order to open the gates of Heaven, not to end human suffering on earth. As every single human being on earth has been created in the image and likeness of God, we are made to follow Christ to Calvary, and to suffer with Him. And if we think of God and His existence not in our 2D dimension of time by saying “Well Christ DIED and the work is done now,” we have to open our perception. Yes, Christ is the ascended Son of God, but we still have work to do. Jesus made that very clear to his apostles in the days leading up to his crucifixion and in the 40 days afterward before He joined our Father in heaven.
Now that kind of thinking is crazy talk to lots of people who think Jesus died to save the world from temporal suffering and they just get to kick back and live the good life and raise their hands to the sky every Sunday to the sound of drums.
But what I’m talking about –what JPII, what the saints, and the entire point of Jesus Christ’s story in history are talking about– is the only thing that makes sense!
BECAUSE HERE I AM IN MY PAIN and THERE YOU ARE WITH YOUR PAIN! On earth, after Christ saved us.
Okay. So there is actually a reason for pain: to draw us and the whole world closer to Christ.
Next question: What are we doing with this pain?
Have you given your pain a purpose?
Here are a few examples of how I’ve given my suffering a job (and it doesn’t have to be only physical pain!):
I offered the pain I experienced during each of my childbirths up to God, for the salvation of separate, specific people. These people do not know who they are, nor will they ever.
In October, I offered what I expected to be a passing nuisance up to God for someone else. I guess I’m still offering this pain for that person.
What kind of God warrants that people allow themselves to be in pain so that others may gain Heaven?
Well… The kind of God who sent His only begotten Son to the world to suffer and die on a cross so that the gates of Heaven would open. But also, God doesn’t “warrant” so much as He gives us a choice -our own free will- do to what we will with our circumstances.
I believe that, in pain, we can encounter Christ in an intimate and personal way as he was scourged, as He hung on the cross. I believe that we can desire to live in Christ, yes, in his glory in heaven, but also in his suffering on earth. I believe in our moments of pain, suffering, loss, we can hear his slow breath in his very last moments, we can share some sense of his own suffering. I believe that Christ particularly hears the cries of those in pain. I believe that at the most intense times of suffering in our life, we have the ability to be closest to Christ crucified; and as a Christian striving to live like Christ, why not whisper “Father bless that person. Father forgive that person.” along with “through your own wounds, heal my body. I trust in you.”
Too Long Didn’t Read Version:
No, don’t go cutting yourself because it’ll get you or someone else to heaven. Point totally missed. If you know your Bible, you’ll know “your body is a temple..” But ironically, because your body is a temple of God, when suffering -in any form- falls upon you, offer it up to Christ Crucified while also praying for your own healing, because “I have the strength for everything through him who empowers me.k” and my personal favorite: “In the world you will have trouble, but take courage, I have conquered the world.”
I’m working to improve my health, to figure out what’s wrong. But in the meantime, it seems I have some work to do. I’m not taking prescription painkillers in attempts to obliterate every wince of pain, but I am taking supplements, I’ve altered my diet, and I’m going through Advil like they’re breath mints. Yes, I’m short on patience with my boys, yes I complain ALL THE TIME. I’m a flawed human being trying imperfectly to live like Christ.