Finally, some answers! (A diagnosis)

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.

What’s perhaps made it worse is I wake each morning, my mystery pains creeping back to their previous state of terrible, and I feel rushed to do everything I can- the dishes, wiping cabinets, organizing cabinet contents and drawers, anything that I was physically incapable of doing previous to taking the steroids.

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.

Pinterest AS

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).

Laughing tears.

 

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.

Pray for me?

36 Comments

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  4. Carolyn, I follow you on Instagram and periodically read your blog. You have a gift for writing and have a beautiful perspective to offer. Thank you for sharing. I have been praying for your family, and I will certainly be keeping you in prayer in a particular way.

  5. I will pray for you, Carolyn!! Just wanted to chime in–when I was 20 I was suffering from really debilitating OCD. Not just “Oh, I’m so OCD because I like my house clean!!” I mean truly DEBILITATING, couldn’t get out of bed, having legitimate panic attacks, etc. I had been in therapy for about 8 months and had tried EVERYTHING I could to help my symptoms naturally. I’m about as crunchy as they come, and I ended up deciding to try medication. All of my friends and family members warned me that I would become suicidal, more depressed, that it wouldn’t work, that it’s a “band-aid” solution…all of the things I had been telling myself for years! Well, in the end it turned out to be one of the best decisions I have ever made. I was on the medication for 6 months and continued going to therapy and it absolutely changed my life. I weaned off the medication with the help of my psychiatrist and never had any negative side effects at all, and I haven’t relapsed at all in the past 4 years. I know my condition is totally totally different from yours and that the treatments are also vastly different, but my point is this–sometimes, modern medicine is EXACTLY what you need to be on the path to healing. I never thought I would say those words!! Seriously, I’m a crunchaholic!! But I really learned to not believe everything I read on natural health websites. Though the info is certainly factual, it’s not necessarily true for every single person. I will pray that the TNF inhibitor helps you and that you don’t experience any nasty side effects! Hang in there!!

  6. I’m another long-time reader, first time commenter :) I will be keeping you in my prayers and I’m glad you have a diagnosis! I was diagnosed with my autoimmune problems as a child, but my mom had a similar journey to yours (different disease, but extremely debilitating as well) A lot of the dietary things I would suggest you are already doing. Although, we recently learned about acid-alkaline diet (there are lots of resources but here is an example http://www.acidalkalinediet.net/alkaline-foods.php) I mention it because the more acid your body’s ph is, the more pain there is. We are big believers of balancing and finding what is right for yourself!
    I wanted to also mention/suggest a variety of bodywork. I don’t know if they would completely stop the need for such scary meds, but maybe at least help So only sometimes meds or much lower doses than otherwise? My issues aren’t the same as yours, but I have been getting regular chiropractic care since my teenage years (so almost 20 years now). We didn’t know if I would ever be able to have children, but I was fortunate to have a doctor recommend I get accupuncture to get my body baby-making ready :) my dad had recently been completely cured of Bell’s palsy with accupuncture, so I was very intrigued. After regular accupuncture sessions , and following my blood type diet (another wonderful nutrition guide, lol! As I said, good to find a healthy balance) I had a healthy and pretty wonderful pregnancy. I recently just had my third and would not have been functioning if it weren’t for my chiropractor and my accupuncturist! I could easily go on and on, but I just wanted to share what has helped me be able to function and take care of my kids and hubby (house sometimes neglected, but I try to balance things out) I really appreciate how much you share on your blog — besides being a mama and dealing with autoimmune diseases, pain etc, I’m also Catholic and one of my kids is autistic. We don’t have the same life, but I feel some solidarity ;) You are in my prayers…keep kicking Satan’s butt by offering up your pain! Xoxoxoxoxoxo

  7. I’ve never commented but wanted to send my prayers your way. Autoimmunity is horrible. Our two-year-old was just diagnosed with Type 1 Diabetes in March and it’s just…so…ugly and hard.

    My only suggestion on the TNF Inhibitors is that, yes, they’re scary, but my guess is they probably are the only thing that will work. Obviously you want to tamp down inflammation and it’s possible that the gut microbiome plays a role in kicking off this inflammation….but we just don’t know enough about it to actually fix things. We don’t know which bacteria are “good” or “bad” or in what ratios, really, and it could differ between people and depending on which disease you’re facing. Also, I don’t think all TNF Inhibitors affect pregnancy, so talk to your doctor as there may be some alternatives that would, at the least, not harm your baby if you were to get pregnant while taking it.

  8. My daughter (7) has battled SOJIA for three years now. We tried everything natural we could and have found that the immune suppressing medications (and steroids) were the only thing that made a difference. Though we follow a strict diet that seems to help a little, no amount of bone broth or tart cherry juice or frankincense made a dent in the pain.

    I sobbed over the drug brochures the doctor sent home. How could we expose our daughter to this?!?! As we saw her lying on the couch, day after day, unable to be cuddled, unwilling to even eat, we realized we had no choice. We couldn’t worry about cancer in 10 years because we just needed to get through the next day, the next hour, the next minute.

    There has been some comfort in accepting that we didn’t really have a lot of options. We’re doing the best we can. ( And you have permission to smack anyone who says, “God doesn’t give you more than you can handle.” )

    I recommend looking for a community of some sort — through facebook or your local chapter of the Arthritis Foundation – – so you can hear from others going through the same thing.

    So, so sorry for what you’re going through. May you be blessed with patience, strength, wisdom, and peace to get through the next minute, day, and year.

  9. My heart really goes out to you. My Mom has chronic pain and arthritis, and she used Imitrex just to get out of bed some days. Prayers. My Dad is a doctor and he was behind her using it 100%. Do what you need to do! God bless.

  10. Wow. I really didn’t know anything about you until this post. I’m so so sorry. So much suffering. Will pray for you.

  11. Carolyn, thanks for your honesty and your brave vulnerability. I will pray for you as you navigate this very uncertain course. – nancyo

  12. I am praying for you! That is so incredibly hard. I love your writing and thank you for sharing your story. You and your family will continue to be in my prayers daily .

  14. Oh, Carolyn. What a cross to bear. Praying for you. I agree that the first step is to forgive yourself and let go of all that angry, hurtful self-talk. That will take awhile to break as a habit, I imagine.

    One of my best friends has several autoimmune disorders (with similar symptoms as yours) and the only diet that gave her relief was the a Autoimmune Protocol, or AIP. I hope I’m not overstepping by mentioning it. I know you’re probably getting ridiculous amounts of well-meaning but unhelpful advice, so feel free to ignore mine. Just wanted to toss it out there. Sending up a million prayers.

    1. You’re never overstepping! I’m open to as much advice as I can get- I’m the one who somehow manages to overlook some of the most obvious things that everyone else knows about -so thank you. ?

  17. Carolyn, I’m so sorry for this heavy pain that you must bear. My brother has an autoimmune disease and it breaks my heart to watch him suffer so greatly. It is no small feat.
    I am so relieved for you that you found answer, though, because it can be awfully frustrating when you have no idea what in the world is happening to your body.
    I am praying so hard that you find some things that will help relieve your pain. <3

    1. Thank you Laurel, for stopping by and your sweet comment. It IS such a relief! I’ll keep your brother in my intentions.

  20. One of my best friends was diagnosed with the same disease when we were in college. It has radically changed her life but after years of frustration she’s finally found a medication mix that seems to be working for her. With your permission and hers, I could connect the two of you by email? Praying for you so hard. I know how hard this disease is.

  25. Oh Carolyn, I’m praying for you. This is such a tough diagnosis and I can only imagine the pain you go through daily. Just sending love to you xx

  26. Oh, Caroline… I’m so sorry! I’m also relieved that you finally have a name for what is happening. I don’t have the disease you do but I do understand somewhat and cried through your post. I get this:

    “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.”

    I get it so much. In fact, it hit me like a brick in the stomach to read it. It has affected the lives of my children, our homeschool, our family. Even as I prepare to send my oldest off to college, I find myself upset about the years past that I wish I could do over without my limitations. I do not understand God’s ways.

    I had a relapse of some of my symptoms last night and did not handle it well mentally and emotionally. It made me angry. My lifestyle keeps my mystery monster managed but I don’t know if I will ever be free of it… and I don’t even know what “it” is. When I read your post today, I felt so sad for you but also consoled. I was healed a little more by your beautiful words. I am not a failure of a human being. I am sick. No matter how many times I have said that, it is so hard to believe… and it helps to hear it from another. One thing I know, and it’s a painful/joyful kind of knowing…

    God will draw you so close to Him through this pain. He loves you. He loves you. He loves you.

    You remain in my prayers.

  27. I have no idea if this would help you but if you are at the point of trying anything it might be worth a try if you’ve never heard of it. I don’t have a similar condition but I had some sort of autoimmune infertility for years and this was one thing we did on top of dietary stuff that seemed to make a difference.

    http://www.lowdosenaltrexone.org

  28. I’ve never commented on your blog before, but I really appreciate your writing style and your honesty. You sound like you are (understandably) having a rough day, so I wanted to pipe up and say that I am praying for you, for answers, and healing, and for your family.

    Hang in there!

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