36 Comments

  1. 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.

  2. 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!!

  3. 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

  4. 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.

  5. 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.

  6. 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.

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

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

  9. 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 .

  10. 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. ?

  11. 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.

  12. 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.

  13. 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

  14. 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.

  15. 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

  16. 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!

Comments are closed.