When I first wrote When a Diet Doesn’t Heal Chronic Illness, it was an attempt to let loose some very raw emotions. I didn’t count on it turning into something so encouraging. The minute I clicked on the post publish button, the comments, emails, and Facebook messages started pouring in – in droves. I had no idea what response I would receive, if any, and yet the outpouring of your love and support was a balm to my weary soul. You encouraged me, prayed for me, loved me. I was (and still am) blown away by the response. I read many of your messages with tears in my eyes. My husband and I met with my rheumatologist yesterday, and the nurse gave me my first injection of Enbrel. You gave me the boost I needed to put the guilt aside and step out in faith. It was time. I needed it, and my family needed it.
I wanted to share with you, what one reader, Jacqui, wrote me. Her words were so beautiful and inspiring that I’m thinking of framing them and keeping them in my kitchen, or at my desk, somwhere where I will see and read them often (Jacqui, I can’t thank you enough for your encouragement and words of wisdom! Lots of love to you!):
“And then there’s our fickle soul…up and down with emotion… And the battle wears on us until that brings a chemical deficit that results in yet another physiological symptom…depression. ?
So, what do we do? We cry…and we rest…and we refuse to let the enemy beat us up when we are reminded that our Father has plans for us, and that… They. Are. Good! They sure don’t feel good…but we must refuse to believe the lies that hover, and choose…choose to believe the One Who never lies. (Preaching to myself, here. Just dried some of my own tears.)”
Putting my feet forward without being able to see what lies in front of me is daunting. I won’t lie, part of me is really scared. My anxiety yesterday while at my doctor’s office and at the blood draw clinic was through the roof. Today I’m doing better, but I keep visualizing all of my fears in a bucket, and I keep laying that bucket down at the feet of Jesus. Some of you might understand that, others of you might not… and that’s okay. But mentally my faith is the one thing that always, always gives me the hope to keep stepping forward. I’m trying to believe Enbrel will work, and will work well, for whatever amount of time I need it to. Easier said than done, but I’m giving my best effort to remain hopeful.
When I was chatting with my rheumatologist yesterday, he mentioned if the Enbrel did fail, it’s a possibility I can try Otezla next. I surprisingly had never heard of Otezla. It’s actually a pill that doesn’t suppress the immune system like biologics do. The bummer is one must try and fail Methotrexate, Humira, and Enbrel before being a candidate for it (so far I’ve tried and failed Methotrexate, and Humira), otherwise insurance won’t pick up the tab. From what I understand, Otezla is ridiculously expensive, even more expensive than some of the biologics, which can range from $15k-60k annually (source). I don’t know yet what my insurance is going to cover for Enbrel. When I was on Humira 3 years ago, insurance thankfully picked up most of the tab and made it surprisingly affordable. I’m hoping the same will ring true for Enbrel.
I told my doctor yesterday that, “I am so tired (mentally, physically, emotionally).” Here’s to a new outlook, to better health, to medication working well, and to an amazing social media community. Thank you so much, friends. Your support means more than you will ever know.
xoxo,
Megan
PS- If any of my autoimmune friends have been on Otezla, I’d love to hear your results with it if you’re willing to share.
PPS- My Ultimate Paleo Chocolate Chip Cookies really are perfect for anxiety… not that I would know anything at all about emotional eating. *eye roll* Let’s just say I won’t openly admit how many cookies I ate in a 36 hour period. 😉
Melissa
Thank you for the beautiful words wrapping chronic illness up in a managable language, for giving an illustration of how we can put our fears and symptoms in a bucket at Jesus’ feet.
Loving how your expression of grief didn’t need to be negative, sometimes it’s a struggle when writing to try to be positive for the readers but there’s always grief isn’t there? It comes and goes as symptoms wax and wane and new ones arise. Just thank you.
Meghan
Thank you so much for your posts. I’ve been beating myself up over having to abandon the low-FODMAP diet for whatever my guts will tolerate just to avoid the hospital (I have had Ulcerative Colitis for almost 13 years). I simply cannot handle the onslaught of fruits and veggies that comes with the diet, and what works is plain old white bread, potatoes, and rice. I’ve cried and felt like such a hypocrite for touting the benefits of the diet, and then ditching it. But your post reminded me that we have to constantly weigh our decisions based on where we are with our illness. The low-FODMAP diet is not meant to put one with digestive disorders into remission, but merely to help maintain it. If I’m not in remission, than how can I expect it to work for me? A change in perspective makes a huge difference. So thank you so much sharing your life with us. You have help me so much.
Celine
Hi Meghan,
I had severe digestive issues and fiber made it so much worse. I documented myself on fiber and its effect on the gut and learnt that it can actually be poison for your digestion. Once i was on a low fiber diet my symptoms started to fade away. I was amazed…I read some interesting things on gutsense.com about fiber. But i mostly wanted to say that you should listen to your body and no diet has the same effects on everyone. If eating low fiber works for you, by all means eat that way 🙂 ! Kind regards and my best wishes to you x
To Megan, I was so moved by your first post to which i’d replied, and i’m so glad you have shared this follow up with us all 🙂 I hope you feel better soon <3 !
Joanne Peterson
Megan, thank you for sharing how encouraged you were from the comments to do what is necessary for you to keep moving forward. It is so true we just don’t know what God has planned for us. And yes it is always used for good. And just because it is for our good, doesn’t mean we won’t grieve for what once was, what we had hoped, what will be. Yes, this is beautiful to paint the word picture of visualizing putting all your fears in a bucket at the feet of Jesus. He does care for you, and is close to the brokenhearted. Your vulnerability gave words to those of us who have been struggling, a gift to think and ponder and be blessed to consider some options. God’s economy is so amazing that the same comfort we receive from God, we can give to others. What just happened on your blog post is lovely…..God breathed. Shall continue to pray, because what the enemy wants to use for evil, God will use for good. I just read yesterday another perspective from a hardcopy newsletter that I knew and needed a reminder. The message in a nutshell is this very hard time will be used to make us totally dependent on Him, and it will give us a new intimacy with Him, and is a revelation of Himself. I thought of you while I read the newsletter. We do want more and more a revelation of Jesus. And even though this is the hard route of suffering, it is also by suffering that we see our Jesus for who He really is as we become more and more dependent on Him. This changes us to be more like Jesus. I’m sorry, I’m preaching’ to the choir, really your post, and what I read yesterday was for me too. It’s been a long haul, and hope is work. Work to believe Jesus says Who He says He is when things are very long and hard with seeming no apparent change in the near future. But we change, to be more and more like Jesus.
I’ll keep praying and lifting you up.
Joanne
Jackie
I’m so glad to hear you’re feeling a bit better about things. Every time I have your wonderful bread (the GF whole grain with flax) I think of you and say a prayer. Thanks for all the love you give to your readers and fellow bakers.
Tami Sharpe
Our words also play a part in how we feel. I know I just don’t feel myself, tired of having hives from gluten and something else , which I am working on finding out why and what causes them. 1 more elimination diet, so to speak. Keep tweaking what I doing, but NEVER giving up! Keep journaling food and reactions. Yes I am tired of this, however, I have noticed that when I verbalize how I feel, I actually feel worse. So, I have started say ” yes I am dealing with “….. put in here whatever”… but today I choose to be happy, deal with whatever and SMILE!!!! When I read articles on Gluten Free living and read the blogs, I find that there is someone dealing with worse cases than I am. I know that my God will not allow me to deal with something that ” I” can’t handle, ( cause HE knows I can’t) but with HIS help, I can. HE is my strength, my healer and everything else. We all deal with issues, it is how WE respond to them and how WE help others that are” dealing” with “issues”.
You might be the only light that someone sees today! Why not make it a bright light and encourage others!!! Keeping you in my thoughts today and this weekend!
Jacqui
I’m humbled to tears…just so very thankful you found comfort in my words…hopefully His words.
God bless you as you continue in this journey. I WILL continue to pray for you! You can count on that!
Much love,
Jacqui
Amanda Gatlin
Hi. I take Low Dose Naltrexone, amitriptyline, and a natural painkiller called Flexcin for PsA and AS. Thankfully I’ve never had to take biologics. If you’re interested I can send you some info. LDN is an immune system modulator with little to no side-effects for $50 or less a month. I’m not selling these things. I just want to help. : )
Lynne
For me, LDN had a major side effect and one I couldn’t handle – insomnia. As the author keeps stating we all have different things that work and different things that don’t. Sometimes I am up for trying a new something and sometimes I give myself (sometimes reluctantly) the permission to quit trying for awhile and just live with what I know. Hang in there all of us and grieve when we need to.
Maria
Thank you so so very much! I just read your posts on Pinterest, and I am bawling my eyes out with a deep feeling of togetherness. I am not alone!! I have been battling a chronic lung and sinus illness for 3 1/2 long years now and feel SO alone, useless, ashamed and hopeless. I have gained 60 lbs because of all the steroids and inability to excersise without making myself sick for days and sometimes even weeks. I’ve tried so many of the same interventions you listed and have gotten quite a few of the same comments from people. They’ve left me feeling like a failure and like maybe they’re right and I just need to try harder and in the meantime have had to start taking depression and anxiety meds to balance all of my overthinking and picking on myself that I have done. Some days are better than others, but the encouragement I found in reading what you have lovingly and honestly shared has truly touched my heart! God DOES have a plan for my life still. He hasn’t run away like everyone else. He has provided for me and LOVED me every step of the way. Again, thank you. I can hear my Father’s voice speaking to me through your blog post and it’s been too long since I shut myself up long enough to listen! ((Big hug)) from Palmer, AK!! If I ever see you in public, (well, and recognize you) I might ask for a hug for real! Don’t be scared, I have blue hair!
amber
Thanks for the update, Megan! So proud of you for taking this big risk.
Georgia
Your blog is the perfect way for me to end my day! I’ve struggled with so many of the emotions you are describing. I’ve felt guilty at times thinking that I must be doing something wrong and that is why I have Fibro. I’ve cut out dairy, wheat, sugar, almonds and currently seeds (I found out that too much almond and seed flour can build up oxalates in the body and cause pain) and high oxalate fruits and vegetables. I wasn’t sleeping much at all and my husband finally asked that I PLEASE do what the doctor said to do by taking the medications. I decided to submit to his advice. My pain is now under control and so is the insomnia (caused by the pain). I have to fight anxiety about taking the medications and sometimes I wonder if I should try to go off the medication and see if things are better. Then I will have a night with hardly no sleep and I decide to leave things as they are. Thanks again for your transparency. May He bless you and then bless you some more!
Barb
hi Megan,
Wow, I can’t even imagine the struggles you face each day. I am being treated for candida and hasimotos. I’m taking an anti fungal and an enzyme for the candida but I’m treating the hasimotos with diet. Right I’m on low carb, no sugar, no dairy and no gluten. I also use Young Living essential oils to help my thyroid. I’ll redo my labs in a couple months to see if there is any change. Have you tried essential oils? I pray for your continued strength.
Sandra
How fitting that I see this article just around the same time I also caved and said I couldn’t do it naturally anymore alone… I just got cimzia injected n already feel 10x better… kicking myself as to why I let myself suffer so long before doing it but I learnt alot during that time n will continue to eat clean etc… but with a Lil boost help from my drug… it feels so good to finally stop making myself feel bad about it now that I’ve done it
Miriam
I feel ya. I’ve had issues all my life that no one fully understands and every doctor thinks they can cure. No one has and I’ve been trying all the diet and oils stuff you mentioned. Allergy shots (three twice a week), three rounds. I’ve had the people questioning my faith trial as well. Have you had the “Fine, God, my healing isn’t part of your plan. I’m not one of your special ones. I get it. I’ll move on” moment?
Don’t give up. It could be that you need the medication to get to a manageable level so the diet can support or further your healing. You’ve tried all the diets, just like me. You’ll find the combo that gives you the most relief. Mine is certain dairy (I’m figuring that out now. Cheese def has to go, and guess how much I love cheese!), and added sugars. That relieves joint pain, sinus swelling and makes it so I can live with my husband’s (awesome) dog. I also have regular cycles if I stay on a meat and veg (with little grain or dairy) diet. But it’s all a frustrating trial and error, isn’t it?
Someone asked me my idea of Heaven. I said, not thinking about my health, EVER.
I hope the meds do their job without strpping you of anything you need to enjoy your life. Breathe. Relax. Pray about other stuff, because others are praying for you. I wish you health and peace.
Mary Kay
Hi Megan! I’m new to all the gluten free stuff. Thank you for your blog. I’ve learned a lot.
I’ve had gastrointestinal issues for years, but didn’t know what all of the causes were. I finally went to a doctor about two years ago who didn’t diagnose me and sent me away saying “you just need to figure out what you can and cannot eat.” I tried, but couldn’t. A few months ago, I went to a different doctor. He suggested I send a stool sample to a doctor in Dallas who can test for specific foods. I had an immunological reaction to all 15 foods that they tested! Gluten was my highest reaction. I also found out that COFFEE has a gluten protein in it. When I stopped drinking coffee, my stomach stopped cramping and sending me running to the toilet. I loved my coffee, but I love not hurting and wondering if I’m going to make it to the bathroom. I don’t know if this will help your arthritis, but it may be worth a try.
Thanks for your recipes and your honest, open conversation with all of us!
Praying that God will bless and heal you!
Mary Kay
Mary
Megan,
Thank you for your blog. It is uplifting and down to earth. Your wonderful energy is so helpful.
Diane
Megan,
Thanks for all the gluten free recipes. You have given me the push to bake and cook and I’m loving it.
Thanks.
I would also like to suggest you try Low Dose Naltrexone. It helps with many autoimmune problems. It is like magic in a bottle. You may need to have a nuropath prescribe it for you. It is a compounded a pharmacy for you.