I’m struggling emotionally. I’m in physical pain, yes, because of my psoriatic arthritis and spondylitis, but mentally I’m beating myself up. I’m grieving. Grieving the idea that some days I. Just. Can’t. I can’t continue with treating this illness with diet alone and I’m on the brink of heading into my rheumatologist’s office and asking to be put on another biologic (Embrel or Simponi to be exact). I’ve been gluten-free, dairy-free, refined sugar-free, mostly corn-free, and processed food-free for over 5 years now. I’ve tried the vegan way of eating, I’ve done the Paleo diet, I’ve used essential oils, etc. I’ve fought long and hard, and yet today… it’s still not enough. I make nearly everything from scratch, I’ve made fermented foods, soaked grains, avoided night shades, switched all of my soaps/cleaners/makeup to gluten-free and pure ingredients, and even still… it’s not enough. We went through a long period of time where we only bought organic foods. I’ve spent out the wazoo for various supplements, herbals, curcumin (tumeric in high doses), fish oils, D3, etc… It still wasn’t enough.
What do you do when a diet doesn’t heal chronic illness? When it’s just not enough?
While I can’t tell you specifically what to do (because only you really know what’s best for you), here’s what I’m doing: I’m grieving, I’m praying, and I’m thinking very seriously about waving my white flag and asking for the heavy-duty medications I never wanted to be put on. Embrel and Simponi are medications given by injection. Embrel is a once a week injection, while Simponi is a once a month injection. They are chemotherapy drugs, as they lower your immune system and make it more difficult for your body to fight infection. The list of side effects are long; however, they have proven to be effective in slowing down the progression of long-term joint damage for those of us with chronic auto-immune arthritis. I just want some relief. Long-term relief and a break from the pain.
I’m trying very hard to overcome the negative talk in my head saying, “Whatever you try, it just isn’t enough.” That’s been very difficult, because I’ve busted my butt trying. I feel like I’m letting myself down admitting to my doctor I’m struggling, really struggling, that I just can’t handle the pain, nausea, and exhaustion anymore. I realize I’m being overly critical of myself, but I imagine there are also others out there struggling with similar emotions. I know in my heart of hearts my God will take care of me – whatever happens, and I need to depend on Him instead of myself. I’ll always pray for my miracle, but my disappointment still lingers. I’m human, and I’m struggling and praying my way through it.
On top of my own personal disappointments, there are continuous comments from others that seems to always drive the stake in further:
“Well then obviously you’re not using the oils right, or not using the correct ones.”
“You need to use X brand of oils instead of Y brand. X brand is far superior.”
“You haven’t tried Paleo long enough.”
“You need to try the GAPS diet and stick to it until you’re healed.”
“You or your family must have committed a horrible sin for you to be so sick.”
“You should be doing the Paleo Auto-Immune Protocol.”
“Whole 30 will cure you if you stick to it long enough.”
“If you’re not eating 100% organic, how can you expect to feel well?”
“I heard tart cherry juice and apple cider vinegar will cure arthritis.”
Please understand, some individuals have success using oils (no matter what brand), the diets mentioned above, and I fully support eating organic foods. My point is, just because something specific has worked for you, doesn’t mean it will work the same for the next person, or heal their diseases. Removing allergens from my diet and eating non-processed, whole foods gave me the ability to function for several years. And I truly believe my health would be worse off today had I not changed my eating habits. Essential oils and some of the supplements also helped. So why the recent change? I don’t know. Maybe it’s just the disease progressing? My current stress level? Being busier than normal? All of the above? My guess is as good as yours. I just know that I’m reaching my wits end and I’m feeling like I’m running out of natural options. It’s frustrating.
What about you? Have you been in a similar situation?
“Don’t make me adult today. Please don’t make me adult.”
UPDATED- To read an update on this story, please see Part 2: When a Diet Doesn’t Heal Chronic Illness.
This post is linked to Fat Tuesday.
Davina Stuart says
*hugs* you do what you need to do to take care of yourself and your family. No one else (outside of your husband and kids, maybe…) gets a say in any of it. 🙂
Chandra Colley says
I always get so encouraged by people saying they have cured themselves with proper diet and elimination of certain things. But after so many trials and failures and mounting conditions for me, when the medications work and the pain and symptoms are alleviated, it’s hard to argue that meds are bad and the right foods can be better in the long run. I have been addicted to pain meds and fought my way back. I have lost my job due to my chronic pain condition. I job that I dearly loved and fought through the pain to be at every day. I argue with myself everyday foods vs. meds. I am so glad to hear that someone else is in the same dilemma. I wish you all the best. Just remember, you will make the best choice for you, no matter what others say.
Amanda Paa says
if i could give you a big hug right now, i surely would. i completely know the feeling, and you are so right in that you have to do what is best for you, regardless of what works for others. our bodies are all different, our lives are all different. when i decided to take the antibiotics for SIBO, I felt like I was throwing in the towel too. but i then realized i was simply fighting for myself. i’m praying for you and sending you love, as well as a calm mind. xo
Mary Stephens says
I don’t have an auto-immune disease – at least that has been diagnosed. I do have interstitial cystitis, an anxiety disorder, SAD and several un-diagnosed health problems that cause me various struggles – all “invisible illnesses” most of the time. One thing I’ve learned is that there are no silver bullets. Some things help. Some things help some people a lot and others little or not at all. Ultimately, we have to make our own decisions about what we are going to do and not do. As a Christian I think this should be done considering what the Lord would have *me* to do (Not what He wants someone else to do), what works best for me (taking my limitations and demands of life into consideration), and what provides the best relief so that I can serve the Lord in the place and way He wants me to to the best of my ability. If that means traditional medicine, so be it. If that means eating really healthy in some areas and being more flexible in others, that’s ok. If that means not following some diets and plans because they make life too complicated, well…that’s what it is. Don’t feel guilty for having tried, but also don’t feel guilty for giving up on the “natural plan” and seeking something that will really work. Most of all, don’t let others make you feel guilty for “falling off the natural wagon” or “not doing it right”. I know. It’s hard. Oh, and by the way….it’s OK to grieve. Grief is a real part of chronic health problems.
I think there is too much emphasis sometimes on “God has a cure for everything in nature, we just have to find it.” Reality is that our genetics are broken down and decaying from the way God created them in the beginning. God also has given men knowledge to help people in ways that are beyond amazing. Yes, much is used for evil, but sometimes, in some situations, in some ways it’s just plain helpful. Be prudent and prayerful as you approach it, and commit yourself to the Lord’s hands. It isn’t wrong to want relief.
2 Corinthians 1:3-5 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
This posting couldn’t have hit home any harder. I have the same struggles. I have moderate – severe Crohn’s disease, and I’m in the worst flare of my life. I’m 31 years old and feel I’ve tried everything! Drugs (including biologics), supplements and prayer. I’ve also been following the Paleo diet for over a year. I’ve changed my entire life to fight this disease and it still continues to get worse. I know all to well what it feels like to get so discouraged. It’s so frustrating and I’d give anything to see a sign that my efforts are worth it. However I was given some incredible advice that I’m hoping will help you. There are 4 components to managing an autoimmune disease. Diet, exercise, stress management and drugs. In a perfect world people like you and I could usually get by with the first 3. With that being said we put to much pressure on ourselves and believe we are in complete control of our disease. In reality sometimes despite all of our best efforts our disease has control over us. It’s still important to do everything we can, and just hearing this advice was a weight off my shoulders! Sometimes it’s not totally in our control. As perfect and careful as we try to be once in a while it’s not enough and it’s necessary to take a medication. It’s not forever. And we didn’t fail. And don’t get discouraged. I promise it won’t always be this way! I’m in the same boat as you! And so grateful I’m not the only one feeling these frustrations! Keep doing all that your doing it’s definitely making a difference. And most importantly, keep having faith.
Elizabeth Monticue says
Sandi, you have said what needs to be said, so very well. If and when the time comes that I must make a decision to take a drug or not take it for my health problems, I will remember what you’ve written. Thank you.
I too have Crohn’s disease and when I was your age I was much like you are now by the sounds of your words to Megan. I did have what’s called a “bowel resection surgery” where they remove the diseased portion of your intestine and this allowed me to live a normal lifestyle for a very long time. That was such a wonderful time for me after the Surgery! I know exactly what you mean “it’s not totally in our control”, and it really does make us feel helpless in some ways, Don’t give up – there’s always something or someone that can help you!
Thank you Laurie!! I am meeting with a surgeon soon also to discuss a resection. Thank you for writing about your positive experience! It’s very encouraging!! Xo
What would it hurt to give the medicines a try? You’ve done absolutely everything to the furthest extent possible (and have helped thousands do the same!). But if there is a relief available for the pain….seems to me like there is nothing wrong with the trying!
Hugs to you! I have no clue what you’re going through! But I do know you’ve tried everything! Hugs to you!
Use everything available to make your life more handable! Is that a word? Including medicine. Judge if the benefits outweigh the negatives side effects!
Looking forward to hearing your journey! (Saw your mom and dad in church this morning!)
Wow, I really hope people did not actually say those things to you. Trying to manage health issues through diet alone is a great first plan of attack and underutilized for many health conditions. But seriously, sometimes medical intervention is necessary. Also, one doesn’t preclude the other. You can use diet and medicine together. It sounds like you need this. You certainly don’t need to beat yourself up over it. Sending good thoughts your way.
Rachel Crites says
Can I grieve with you? This stuff is so hard, so many choices. I’ve come full circle it seems, and have gotten no where with my Fibromyalgia and lower back pain. I healed my gut despite all my food sensitivities (or was on the way to by eating paleo), then couldn’t stand the pain anymore and went to meds. One after the other the past 6 months, trying to find something that worked for the pain, but instead one after the other experienced so many side effects I was sick all the time and now my gut is torn up again. A month ago I gave the meds all up and started reading everything I could on healing my body naturally, hoping that maybe I could at least get to the point where I’m functional. What else is left? It’s so frustrating and depressing and just plain sad. I react to the food that’s supposed to help my gut, I react to the meds, I am in so much pain I can’t move most of the time, and I go through the checklist: No dairy, wheat, eggs, gluten, sugar, alcohol, and a host of other foods I have sensitivities to for years and I’m worse than before! It’s natural to want a miracle cure–SOMETHING–to relieve the pain and distress. I know God’s got this, as he has everything, but it’s hard to feel that some days. I also agree with Mary, our bodies now are NOT the bodies God designed. I remind myself that I live in a fallen world, that the environment I live in and the unknown toxins all around me are part of that world, but that doesn’t help the pain, just encourages me that this is not my fault. I can’t control now my poor food choices of the past and feeling guilty about it isn’t really helping. I can’t control my past digestion of the chemicals in the pesticides or the genetically modified once healthy food that God created that now has little nutritional value. I can’t live in a bubble now that’s entirely toxin free or control cross contamination that may cause a reaction. I’m having a hard time explaining to my family some days that I literally cannot move, my muscles don’t work! I grieve that I can’t on a whim drive out to the valley from Anchorage because I don’t know if I’ll have the energy and strength to drive back. I’m sad that I can’t walk to the park with my daughter because I may not be able to move to walk back. I’m the music director at my church and have grieved what I’ve had to give up because I just can’t do it anymore. Lately my arms hurt so much from the fibro it’s hard to get through playing for a service, but I want to keep playing because it’s the one way I feel I can still serve . I understand that desperation of needing some kind of relief, but feeling that there’s no other options. I want this current fibro flare to stop. I want to be able to move freely! I don’t like being forced to choose between my pain level and my gut being torn up. I hope you find answers, and thank you for posting this for those of us who feel so alone in our grief and frustration.
Thanks for sharing your struggle. I understand some of what you are writing about. I spent many years working to recover my daughter from the world of autism and it was one of the MOST difficult and frustrating things I could ever have imagined. I prayed for a quick fix, a magic pill, and bright light would go off and I would know EXACTLY what to do! That never happened. FAITH did happen. Faith is required, yet it’s the hardest thing to again in the midst of trying times. I am praying for you. We did an extreme and strict diet for 6 years! Along with MANY other things. The thing I found was that improvements came, but very slowly. She is recovered, and we still treat her body as if we are trying to heal it, but in a much less “stressed-out mode” now. Then many years later, I started having trouble with my own body, and AGAIN, it’s like a jigsaw puzzle that I wanted to figure out immediately(not projecting that onto you, just sharing how I felt/feel)! I want results fast! In the process I TOO felt the guilt of not eating the perfect diet. It’s hard! A friend shared a book with me called Diet Recovery(I think), and it helped me to stop stressing over the diet, because this TYPE A personality stressed and carried guilt over eating the wrong things! It was good for me to read and helped me let go of some of the very counter-productive stress i was feeling. I pray for you to find hope and success! No matter what you do, keep up the healthy lifestyle! It may not feel like it’s paying off now, but it can only help your body (or at least not hurt it any further) in the long run. Thanks again for sharing. I love all yo post!
Cristina @ I Say Nomato says
I just want to give you a huge hug. The things people have said to you are insane – “you must have committed a huge sin” WHO SAYS THAT???? Especially when you have obviously tried your best, and tried so many things. This must be so hard, but it’s not admitting defeat. Please don’t look at it that way. You’re trying another path that will help you become healthier, not just for you but for your family as well. Obviously no one wants to go on drugs if they don’t have to, but they were created and developed for a reason, and in the end hopefully you will find success with them. People who don’t have food allergies often don’t understand what it’s like mentally to have the thing that’s supposed to give you sustenance and keep you alive and running actually attacking you from the inside out. I hope you find success and some peace knowing that you are doing your best.
Thanks so much for sharing this! I am sorry that you are going through this and can really relate to your situation and the emotions that go along with it. It can be so frustrating, depressing, sad and frightening at times to feel like you are doing everything right and spending so much time and energy on your health but not see the progress or results you hoped for. I also struggle to find the balance between using food as medicine and questioning if I need to try something further or a different direction. I wish you the best in your health journey!
Megan, It’s extremely frustrating!!! I faithfully tried gluten free diets, lupus recovery diet, etc. and exercise BUT can’t stop flares. At my recent rheumatologists appt I was diagnosed with low blood pressure. And guess what she told me it was due to healthy eating & exercise which only added to the frustration. Trying to eat right, excercise lower stress level and still this PsA is as aggressive as ever. I am on bi-weekly Humira which was helping but can’t stop the flares either. My rheumatologist is now recommending taking Humira weekly along with Otesla. It just get’s more frustrating!!! I’m super hesitant about taking med after med but it seems that’s my only option too now. You’re probably thinking “well Christine what are you going to do?” I am going to do what will work for me. If that means taking Humira weekly and adding Otesla then so be it! I want to be pain free! I want my energy back! I want my life back!
Had Psoriasis since 14. Diagnosed with PsA, AS 2011
Oh man, I can relate. I’ve been struggling/attempting to keep allergic reactions in check. No need to tell you how stressful it is thinking “if I follow this regimen diligently, everything will be okay.”
Sometimes things are beyond our control. I started a biologic (Xolair) and it’s helped a lot. I continue to struggle with the voice inside my head. It would love to control everything and find relief without the medicine.
If a special diet or therapy alone helps someone, that’s wonderful. But it’s great having all the options.
Many hugs to you. I pray you find the help you need, you are not a failure. You are doing what is right for you and our family!! God bless you on your journey.
Susan McKee-Nugent says
OH GOD GIRL……….GO and get some ‘chemical’ help!!! at least try it and do not beat yourself up over it!!! I have friends on that ‘stuff’ and are living healthy lives. We do have to deal with the cards we are given and HUGS to you! You can always change whatever is offered but do get some relief! Love to you.
Cindy H says
I’m so sorry that you are not getting better. There is nothing more frustrating. I have been gluten free for 2 years and although much better still not there. I gave up rice, soy, corn, and oats. It’s helping some. But you know what? Each of our bodies is different and reacts differently to different things. Just like medications, some help one person while it does nothing for another. Just ignore those rude people. You know your body better than anyone. I’ve heard so many things to try for arthritis and truthfully, none have really worked for me. I understand your frustration. I’m with you. How much more do I have to give up to feel better? I don’t think anyone really knows the answer. So my advice to you is to sit down with your doctor and your husband and discuss this all with pros and cons before you make a decision. Go with what you feel is right for you and ignore everybody else. You are special and you are loved by the gluten free and other allergy type communities. chin up. We’re all praying for and rooting for you!!!
Oh boy. We’re on the same path. Four years of paleo for me, much of it AIP. Several Whole 30s. Oils that I’m using right now, in fact. And today because of the RA I’m walking around on sore feet like a little old lady. What really frustrates me are the constant posts and stories from people whose lives have been transformed because of whole foods and paleo. Every single ailment they ever had just disappeared! I take methotrexate and know when I visit the rheumatologist next month he will want to put me on biologics. The side-effects list is crazy, though, so I don’t want to take them. Like you, I have to believe eating real, whole foods has had a positive impact these four years. Who knows where we’d be otherwise? Thanks for your post. Good to not feel alone, or like I’m doing paleo “wrong” somehow!
I feel for you and I know where you’re coming from. I’ll be praying for you, girl. From experience I can tell you that God will help you through. Love to you from me.
Megan, Hang in there! I realize how difficult it is for us sometimes (ok almost all the time). Do what you believe might help at the moment you are living in. You can’t not do something just because someone else thinks you shouldn’t. It took me a really long time to accept using a strong pain medication-but that med changed my life. While each day is still a struggle, I can at least tolerate the pain and make it though that minute, hour or day. Grieving is the hardest part and so far I haven’t managed to get past it. Just be happy you are alive to see your children today, and hopefully for years to come. Be thankful your husband loves you and is still in your life. Try to find something to smile about even if it’s just looking out the window and it’s a pretty view! You will make it through this period in your life, just take it minute by minute when that’s all you can handle.
Huge gentle hugs!
Amber Best says
I am so sorry that God is allowing this road for you. It can be so difficult to walk and to understand! We have been on a healing road for my son Logan. The children’s hospital here in Indy, diagnosed him with Chronic Fatigue and Irritable Bowel. (useless information) We now know that he has mitochrondrial issues, EBV, Lyme’s, mold allergies, food issues and gut permeability. He was basically was absorbing no nutrients and “starving to death.” A fact that did not seem to bother his GI Specialist. We have totally changed all our diets, taken supplements, and put him on nutritional IVs to give him the nutrients that his body was not getting. It is not easy and we have had many steps forward and backwards. Maybe, nutritional IVs would give you the boost that you need as well. Please be encouraged, that your blog helped us on our road. Thank you for following what God set out for you to do which has helped many others along their journey and blessed many along the way. Our personal struggles have allowed us to help others make healthy changes and work toward healing, even if there is no “cure” for them, the changes help their lives. I have read a book by Dr Terry Wahls, who has MS and she shares great medical advice for all of us to follow showing that while not cured, she is living life to the fullest. She went from a motorized wheelchair to riding bikes again. It does give me hope. I also, encourage you to listen to a sermon by our Pastor, who has suffered with MS for 30 years and has an amazing ministry. You can listen online at http://www.harbourshores.org to the sermon titled, “A Purpose for My Pain.” God wastes nothing, which is encouraging, even when I tell Him that I Don’t Like it! I hope to meet you someday when we are back in Palmer. Our plan is to be there next year and see our family home. My parents should be up there around September. They want raspberries and the State Fair. 🙂 Hopefully, Daddy will get in some flying with his buddy, Dwayne, since our Super Cup is still up at Kingdom Air. My Dad’s “flying days” are over due to Parkinson’s, but he has many who would still share that with him. Our church is Palmer Church of God and that is where we go when in town. You might know people who go there. Please be blessed. I will pray that God will give you clear direction for your next steps. You are a godly example for your children and those around you.
If I may, I will add Logan to our prayer list at church. We have a friend who is also a patient at Children’s in Indy. Last year our pastor asked me to speak on adversity at the Mother/Daughter banquet and I included the verse “my grace is sufficient for thee for my strength is made perfect in weakness” (2 Cor 12:9), relating Paul’s prayers for his own healing with my suffering following the death of our son. We may never know, this side of heaven, why God allows the types of suffering we endure, but it is for sure it is not wasted. It is our decision whether He will get the glory for it by how we deal with it. I learned that I had been misusing 1 Cor 10:13, believing that He never gives us more than we can bear. That simply isn’t the case, because if He didn’t give us more than we can bear, we would have no need for His grace, we would just go about solving our own problems. I will pray for you also, because it is stressful to be the caretaker, and if you have other children, they are also having issues while all the attention is on Logan.
Soon we will be able to see face to face even though we now see through a glass darkly, not quite understanding what God’s plan is.
God bless you and your family,
Gwen Brown says
Just wanted to extend another hug and an understanding nod from here I wrote about my health journey with high blood calcium here, and the natural approach didn’t work. I had to have surgery. And even still I have health challenges. I so get it!
Have you ever heard of MTHFR testing? There is a field of study that looks at the biological genetic differences. It’s relatively new, but can be pretty ground breaking for many of us dealing with chronic health issues that don’t seem to be easily solved. Email me if you ever want to chat. <3
Joanne Peterson says
Megan, I’m so sorry you are going through this too! I would love to give you a hug and pray with you for peace.
We are in this season of pain again and my husband is in a lot of pain. We went down the medical route first. We were told there is nothing more that can be done for him, he’ll have to live with the pain. We prayed and believed this living with excruciating pain is not okay, there has to be some other answers.
The natural route definitely did work, we saw results. For whatever reason, Mark is in pain again, badly and has been since November. So, what to do? I don’t know, we’ve done both routes, and different things, Diet, herbs, oils, exercise, supplements, etc. At least for our experience, the diet isn’t toxic, and have terrible side effects like the meds do. We’ll have to keep praying, and seek guidance, and work to have hope, because it is work to have hope. Our little boys don’t understand Dad being unable to do the fun boy things. I really would prefer to have things different also for our boys sake. To have a dad who can do things with them instead of sporadically, once in a while do things.
I will be thinking of you!
Big virtual hug to you.
We are all different and of course it’s entirely possible that what works for someone else will not work for you. People are ridiculous and more so to suggest this is a punishment from God. (really, babies and children with terminal illness are bad)? Truly flawed logic.
My husband has an undiagnosed neuro disease. I’ve changed his diet and inflammation has subsided but he’s also on some meds. You have to do what feels best for you. Living with chronic pain (or in my husband’s case be unable to walk without a cane assisting him) is not easy. And you forget what it feels like to be pain free. Why should anyone have to live that way?
Follow what you feel you truly have to do, outsiders aren’t entitled to their say.
Hi Megan, I really hear your pain…My daughter is 45 yrs old now and she too suffers with psoriatic arthrits. She had taken Methotrexate for 7 yrs and it really made a difference. She lead a nearly symptom free life then she began to experience really bad side effects and the Dr. had to take her off of it. She’s now on Enbrel and having those same really bad side effects ie: Nausea/vomiting..Diarrhea…and severe exhaustion. So, she’s going to probably have to go off it now as well. We’re planning on starting the paleo diet to see if it will at least help her stay well enough to do her job. She’s had a really difficult time financially since her divorce 8 yrs ago and hasn’t been able to afford the diet but now living with us we will get the diet going and pray the Lord will keep her healthy enough to be able to work and enjoy her children and grand children too. The methotrexate was the most beneficial for her and maybe would also give you several years of “normal life”….It may be worth a trying … Anyway best to you and prayers for everyone that suffer so…my heart feels for you all. Sounds like we need to start a support group huh….
I’m so sorry. It is so frustrating to try everything and nothing seems to work. I am going through the same thing. I’ve tried diet, oils, acupuncture and every natural way I know of to make me feel better. I’m going to my internist soon and may just throw in the towel, too, and ask for big pharma meds. Constant exhaustion and pain have worn me down. Good luck, whatever you decide to do. I wish you all the best.
I just want you to know that I have followed your blog for quite some time. Your gluten-free bread recipe is one I make every week for my husband. Anyway, I read your post and my heart goes out to you as you struggle. I agree that everyone’s body is different. What works for one person doesn’t necessarily help another. You have thrown yourself into everything that you’ve tried. If nothing food-related works and you are worn down, it is time to try medication.
I recently read a very interesting article about the Vargus nerve in our body and how it affects inflammation and arthritis within our body. I was interested because of a friend who suffers from rheumatoid arthritis. The study sounded very promising. It has nothing to do with food, by the way. I’m including one link but the article was actually published in the Huffington Post, and the New York Times, and at least one other place besides the one I am sending. You can look at the other articles if interested. Here is the link: http://mosaicscience.com/story/hacking-nervous-system
It may very well be that the injections will work better because you also eat a healthy diet. What you have learned about food is still valid in terms of healthy choices even if they didn’t turn out to be the solution to your pain and your diet may have prevented other illness.
I truly hope that you experience relief no matter which route you go.
Sweet Megan, I’m in the same boat with you, sweet sister. I’ve been in conversation with myself for days over this. Well, years, really. I try to remind myself that I am grieving. And….I. Am. Weary. Guilt and condemnation attack often, and by God’s infinite grace, I’ve made it this far.
You, my dear, have allowed God to speak through you to love on and encourage so many…me included. You have been very much a balm for me, and I’m so sorry that you’re struggling. And yet, this struggle is no stranger to me. I know it well.
We fight a multi-disciplinary battle…we try to eat well, we read and seek out direction…all this in the physical. And we pray, and listen, and stay in God’s Word, seeking direction there, as well…on a spiritual plain.
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.)
Sure do wish we had an afternoon to visit and drink tea…and eat bonbons! Ha! For I can think of no one I’d rather spend that afternoon with. You are precious! And you are treasured!
He will direct each step…quieten the voices that scream for attention. He’s there. Sometimes it takes a while, but that beautiful voice will get through. And ignore the others…there are always others.
Love you dearly, my friend!
Amy at The Chronic Pain Warrior says
I have undiff spondylitis and fibro, and I’ve failed Humira, Enbrel, Remicade, and I’m on Cimzia now. You absolutely have to do what’s right for you, but don’t let others make you feel bad for trying medications that have been proven to slow the progression of the disease. No one knows the pain/exhaustion/physical limitations you deal with, and no one knows what life is like in your shoes. Don’t ever feel like a failure because something didn’t work – I’ve tried so many alternative therapies, I’ve lost count. The only thing that has consistently helped give me any relief was TNF inhibitors. Good luck with whatever you decide.
I know exactly what you’re going through and really wish you weren’t. I also have been doing much the same for other conditions and asking myself the same questions. It really does get us down at times. Like you I get advise that can be really upsetting in the way it is not only said, but how it is said (one of those people is my daughter expecting me to be super strong when I’m physically/emotionally/spiritually spent – I know she doesn’t understand, but it hurts terribly). Right now I have no choice but to use a drug called Lomotil (It’s technically synthetic Opium) which is costing me a small fortune. I do know that what works for one person, doesn’t always work for another. I sure wish I had a magic wand to make those of us that are suffering 24/7 from our illnesses to be relief free – wouldn’t that be so wonderful! Choosing Gluten Free has been my own personal decision which my family doctor does not support. Personally I don’t think gluten is good for anyone’s body. Like you I have a lot of allergies, IBS, Crohn’s Disease, Asthma and arthritis along with Migraines which I have today, but really want you to know that someone that is suffering right now cares about you and hopes you will get better soon. xoxoxo
P.S. I have used some of your recipes – they’re really great! Thanks so much!
P.S. While I’m sick my cute little Cocker spaniel is very sick as well dealing with “PANCREATITIS” which is very severe, so I need to be well enough to take care of her.
Shirley @ gfe & All Gluten-Free Desserts says
Oh, my dear friend, my heart hurts for you! I hate the thought of you being in pain and struggling. Your attitude, perseverance, and overall amazing spirit have always been phenomenal! I can’t tell you how many times you have lifted ME up during far, far less difficult challenges. The bottom line is always do what works for you, always seek the answer that gives you relief and a better life. If only we had a crystal ball to know what all the answers are … for US personally.
It saddens me that folks have said these things to you. I get folks trying to help, but some of those comments are beyond understanding. There’s a saying and I think of it often–and try to always remember it before I offer input to others–“When you point one finger, there are three fingers pointing back to you.” I think sometimes folks forget that we’re human, that they’re human, and, gosh, if such answers came so easily, we’d have nobody ill at all, would we? Balderdash. Something else a friend said to me once, “Why do we care what folks who we don’t even know say?” and “Why do we give them credence in our lives before the real people we love?” We need to stop doing that, right?
I do think the fact that you shared those comments will help others in similar situations see just how ridiculous they are. Once again, you have helped many reading!
Sending you so much love and light and hoping you’ll find some answers and relief ASAP, Megan, and by whatever means it takes! xoxox,
You have no reason to feel bad or to apologize for doing what is best for your own health. This might not be the correct verse to encourage you, but I am reminded of Eph 6:13–“having done all to stand”. You’ve tried everything, persevered at great expense, and now it is time to let God show you His grace even if He uses doctors to do it. It can be a great mission field because doctors and nurses need to see your faith. Who knows whether God will decide to heal you miraculously after all medical efforts have been exhausted? I will be happy to keep you in my prayers.
I totally understand your frustration and I applaud your commitment. I too have an auto immune disorder – Sjogren’s syndrome – and some days things work and some days they don’t – it seems to be a complete and total roller coaster most of the time – I wish I had some words of wisdom – But the truth is there is nothing anyone can say that would give you what you really need which is an answer as to why you – People say that God only gives you as much as you can handle – some days I think he/she leaves his/her finger on the button a little too long – hang in there
Emily @ Recipes to Nourish says
Huge, big hugs to you Megan! Thinking of you xo
Thank you for your honesty! I have always wished that my child would have tried something else other than the “heavy” drugs. She is somewhere in between, making diet changes, using essential oils, switching to natural products, & also taking the drugs. The damage that the drugs do just scare me but you helped put things into perspective & helped me to understand what her needs may be – my fears & wishes are not important, hers are! Thank you & may God bless you!
Kate @ Eat Recycle Repeat says
Sending so many hugs and love to you Megan. Every body and every person is unique, and you need to do what is right for you. I also have been working for years to heal completely, and I have experienced these same frustrating emotions. I don’t have arthritis, however, and I am so sorry you have to deal with such painful symptoms. Two things have helped me tremendously – finding an integrative medicine practitioner to help me treat the root cause of my auto-immune conditions. The support and understanding the provide is incredible.
To help deal with the emotional pain of my illnesses, I’ve taken great comfort and made a lot of improvement with the help of Louise Hay’s books: You Can Heal Your Life & Loving Yourself to Great Health. Also the book by Dr. David Hawkins – Letting Go: The Pathway to Surrender. I found my intuition knows exactly the right thing to help me heal, and these books help me find it with less suffering and more grace.
Stay true to you and take good care of yourself! xoxoxo Kate
I am sending hugs and thoughts of healing your way. Thank you for your honestly and openness (and your delicious recipes). You are an incredibly strong woman!!!
Good for you! For trying everything and for carrying on. It really is all you can do. Best wishes for a some kind of breakthrough and for a life free from pain. Kia kaha.
I just want to say thank you for all your inspirational posts and recipes! I had to completely change my diet because of my babies (and mine as well) food reactions and I know that I couldn’t do that without your website. I’m so sorry to hear about your pain! You are in my prayers and please do not let anyone discourage you… Whatever route you take, it will be the right one for you and your family! You are so strong for going through this and still sharing your story with the world… DO NOT EVER GIVE UP!!!!!!
Dearest Megan – I just want to give you a big hug. I know how hard it is. I felt well for a year. I thought I was finally cured. I felt so well that I took a new job…my dream job. And then, it all came crashing down. I had strange new symptoms. My throat was always hoarse. The muscle fatigue came back. And then the headaches. Headaches that don’t respond to any painkillers. I thought it was because I’d started eating dairy again. But, when I quit dairy nothing changed. I feel like I’m getting gradually worse. My doctor put me on more supplements, but it hasn’t helped. I am exhausted and frustrated. I am tired of being tired and tired of being in pain. I’m tired of never feeling well enough to do what I want. And on the days when I do feel well, I do what I want, but then pay for it later, feeling like I’ve been run over by a truck for days afterward. I want to hope that I will feel well again some day. But, will my hopes just be dashed again? What helps me is to remember to be grateful for what is going well in my life. I try to just focus on what is good. I have so much to be thankful for. And, I believe that God will take care of me. It is not always easy, but I also try to remember that tomorrow is a new day and just take one day at a time. You are not alone! Thank you for sharing your story.
First off….I am sorry you are having such a hard time. Chronic pain and illness is wearing on it best times and a whole lot worse the rest of the time.
First off….if you don’t mind a little advice from a fellow sufferer…I have RA, spinea biffada in a milder form…lupus and several other nasties……so I really do understand you in many way. My advice is to own these puppies. If you take control and own them…..it makes the mindset a little easier. For one thing, it is yours….you need to handle them the best way you can…..period. As to feeling sad, frustrated or whichever negative feeling you are feeling….that’s ok. You are allowed. When we lose a loved one, we go thru a grieving process…that is normal and natural…and if it isn’t allowed…then often times we get quite ill. Having a chronic disease, is like losing someone…..basically yourself….in part to the disease. There are things you are unable to do or deal with…and you don’t have the lifestyle you once did….so it is a small death. So grieve. That’s ok….but it is what and how you do it and what and how long you stay there. Send the kids to the in-laws and have yourself a good cry and scream or pound pillows. I have even imagined my illness sitting in a chair and I told it just what I thought. Sounds stupid, maybe, but it helped me a lot. I was angry so I needed to vent at something so that chair was what I vented at. The kids don’t need to see Mom having a temper tantrum and not sure about your hubby…..mine would have never understood. Staying in grief too long is dangerous. I once read that grief was a like a washing machine……you get in there and get out and you come out clean….stay in too long and it wears out the clothes and destroys all the seams.
As to the dr….you have done your best…and your best is all Jesus ever expects from you…..so do what you need to do. If you are getting too depressed….talk to him about that too. Chronic pain and depression often go hand in hand. Does being depressed mean you are not trusting God to take care of you…..maybe….but you know if we would have been able to do things right….Jesus wouldn’t have had to go thru the mess He did…but He did….and even Jesus wept when Lazurus died. The point is Jesus did go thru it all and He rose again!!!!! He knows pain and suffering and anxiety (when you sweat blood…that’s pretty rugged anxiety), He knows you are doing your best to be the best you that you can be….so give yourself a break….ok.
I am going to paste the comments on here and then talk about them.
Well then obviously you’re not using the oils right, or not using the correct ones.”
“You need to use X brand of oils instead of Y brand. X brand is far superior.”
“You haven’t tried Paleo long enough.”
“You need to try the GAPS diet and stick to it until you’re healed.”
“You or your family must have committed a horrible sin for you to be so sick.”
“You should be doing the Paleo Auto-Immune Protocol.”
“Whole 30 will cure you if you stick to it long enough.”
“If you’re not eating 100% organic, how can you expect to feel well?”
“I heard tart cherry juice and apple cider vinegar will cure arthritis
First off let me say this, the folks that make this comment are often just wise enough to be sanctimonious and very very dangerous.
The biggest thing that they CAN NOT seem to understand is that we are all unique!
That means the Brand x may work on him..but not on her and vise versa. They also forget it when they say that a particular diet would cure you if you stayed on it long enough. Our uniqueness doesn’t allow blanket statements of any kind for the most part. Diets may help sometimes and even with some cure it….but not always.
As to commiting some horrible sin….. ” LET HIM WHO IS WITHOUT SIN, CAST THE FIRST STONE!”
Sin is running rampant in the world….and there are lots of different kinds of sins. Have you sinned….of course….but we have an Advocate with the Father in the form of Jesus Christ. And He is faithful and just to forgive us from sin. It is my belief that the people who say things like that, just committed a bigger sin than you probably have with what they said. I KNOW how much this hurts…..I was told the same line when my baby died.
Eating organic…..well it would be helpful if most of the foods were actually organic and not just organic practices. That means that if Steve Smith had a non organic orchard and Paul Thompson (made up names) bought it from him and started doing organic practices….it could be certified organic!!! The ground itself maybe full of heavy metals and PCB’s but since Mr. Thompson is doing organic practices….it can be and often is certified organic. EXCUSE ME…..NOT BY A LONG SHOT!!!!
Tart cherry juice and apple cider vinegar are two powerful helpers. The two together remove uric acid levels and change in time the ph of the body. But if that doesn’t happen to be the issue….it ain’t gonna do the job no matter how much you drink.
What I have done to help me walk thru this (I am a First Person and we call it firewalking) is to look at what good has been accomplished thru this journey. Maybe not for me…but for my kids or husband or friends or?
What of the people you help with your blog. How many has your journey touched….how many have you helped in your quest to get well. How about family, friends or others……don’t allow the disease to take what Yahweh has done thru and with you. I am sure that He is proud of His daughter
Hold on tight…..Yahweh is coming soon.
May the God the Father encourage, enlighten and cuddle you closer to His heart and hug you sooooo tight that all the broken pieces fit.
I’m so sorry your struggling right now & that you have encountered so much negativity. May god protect and bless you each day. You are not alone.
You nailed it right on the head as to how I am feeling. Like nothing I do is helping and I will always struggle with chronic illness and food sensitivities. But I gave in to medicine a long time ago and am trying to heal myself through proper diet while I get Xolair injections for chronic hives and while I take handfuls of antihistamines every day. We gotta do what we need to in order to survive. Taking medicine is not a sign of weakness or failure. We are all unique and diet may help cure some people but not others. It is all about getting through the day.
Cassidy @ Cassidy's Craveable Creations says
Thanks for sharing this Megan, I’m sure it was hard to write about. I have been gluten free, dairy free, and mostly Paleo for 4 years, been to countless alternative doctors, spent who knows how much money, and still struggle with my health. Also, despite all of the dietary changes and supplements we have given our son his behavior is getting worse and we are considering putting him on a medication for hyperactivity and focus when school starts. His whole life I’ve been against putting him on any type of medication but we are at our wits end. Sometimes you just have to do what you have to do. Sending you lots of love and hugs!!!!!
I just want to say that I’m praying for you and all the ladies on this thread that are struggling and in pain. I too suffer from auto-immunity (Hashimoto’s, UC ) and chronic pain/fatigue from fibromyalgia. Exactly one year ago I decided to try changing my diet to get some pain relief. I did not do “gluten-free”, I also did not adopt a Paleo lifestyle. I read the book called WHEAT BELLY and started immediately. I went GRAIN FREE AND SUGAR FREE. This is very different from gluten free where some people consume other grains. The book is amazing and speaks of grains as being the most dangerous and being a trigger to cause autoimmunity among others. The health benefits of this way of eating are numerous and astounded me. My chronic migraines stopped, I came off of blood pressure Meds and now BP is steady at 120/76. It was 150/95 while on BP MEDS. I also came off of anxiety Meds, and stopped two Meds for my colitis. I lost 30 pounds! My lipid panel was pristine at my physical. The one thing that didn’t change much was the leg pain. Dr Davis says in the book that diet alone is sometimes not enough and I’m encouraged by the fictional med community that focuses on the root cause and fixing that instead of masking symptoms with dangerous drugs. So I am in the middle of adrenal, stool, and hormone testing all via saliva and hoping to uncover some things. Dr Kalish says it all begins in the gut and that causes everything…adrenals and hormones to go crazy so Im testing everything! But the main reason I am writing here is in the hopes that you and the rest of the ladies will read this post about my latest treatment. I have just started taking LOW DOSE NALTREXONE. It is very promising for any one with auto-immune diseases, chronic illness and pain, fighting cancer and preventing cancer! It is unlike any other medication. It actually tricks the body into healing itself. It is an immune system modulator. With virtually no side effects! I have a link with over 400 video testimonials showing their illness and the benefits they have found taking LDN. Best of luck to you all and I pray you find relief!!!
sandra vanderwood says
Dearest Megan. I am a 77 year old grandmother who admires you greatly. You’ve achieved so very much. Homeschooling your beautiful children, creating a blog and tremendous recipes plus so many other achievements I’m unaware of. You are innovative and very creative.
I was struck with psoriasis at 24 after the birth of my first child. On my palms, insoles, and scalp. Twenty four years later, the disease left me. Commpletely. I do not know why. No medication, or prayers or special diet.
Another health problem hit me and that was depression. Food, exercise helped but the only way I could control it was taking medication, SSRI’s, and meditation. I still take this medication after trying many times to stop with not good results.
Sometimes it’s necessary to take drugs. Diabetics, cancer patients, etc.
Do not despair if you need to take them for awhile. I would like you to be glad you live in a world where drugs for medical purposes can really help people. Otherwise we live in the dark ages.
Thank you for sharing. What a positive and brave thing to do. My thoughts and love are with you.
With chronic pain the mind does not function at an even level. I know all too well. Diet has helped eliminate my chronic intense pain but I still live with pain or at least aching on a daily basis. I have chronic hives; due in part to the corn in the medications they use to bind together the ingredients to produce the pills. I can tolerate the level I am at now but still long to feel normal for more than a day or two.
The emotional feeling you get when someone says hurtful thing can exacerbate the pain & feeling like you are all alone in your quest for health. If there were on cure for all things that would be great but I know a lot of people in this world & we all look different, we don’t all ware the same size shoes & we most definitely don’t all like the same foods. If it were that simple we would all be as healthy as everyone & there be utopia on earth right now.
I don’t know if I would take the medications or not. I hope I never have to have that challenge in my life, so you & your family will have to decide if this is a good move for you. I will be praying that the Lord with guide you in your decision & give you peace with it. I will be praying for your whole family as the effects all of you in different ways. To interject some humor in my post “ If Mama’s no happy then no one’s happy” Blessings to you & your family.
Bless your heart. I know doing meds are not what we want, but sometimes modern medicine is the best way to go, especially since you have given it your all. Don’t beat yourself up for doing what has to be done to get you out of pain – life isn’t for the weak my friend, we all have our road to toll, so just take a deep breath, get your shots, and start enjoying your life again. When you’re in pain, life is not fun. Good luck.
Andrea McCarthy says
Thank you for your post. This is my first time reading your blog, our mutual friend Shirley from GFE, shared this post recently. I have recently started seeing a Rheumatologist, was being evaluated for Lupus and Rheumatoid Arthritis. He has ruled out Lupus but started me on Prednisone and wants me to take Plaquenil. He is saying he is on the fence if I have RA but nonetheless is wanting me to take a medication that RA patients take.
I usually prefer seeing holistic/alternative medicine doctors (the only type of doctor that discovered my gluten intolerance and hypothyroidism in 2010) and have frustrated doctors when I want to be a “rebel” and not take the meds prescribed. I also attended Institute for Integrative Nutrition (IIN) and became a Certified Health Coach. It was drilled into our heads that food is medicine and food can heal, etc., etc. I feel no matter what I do food and supplement wise, the pain is still there, the inflammation isn’t going away and I may have to succumb to taking the Plaquenil. It scares the crap out of me but I almost feel like I have no choice. I want to feel “normal” again, if that is even possible.
I’m sorry for those comments people have made to you. I can relate all to well to that also. I was seeing a therapist due to being overwhelmed by my illness and other things I have going on in my life and she recently told me she could see I am gaining weight and should probably go on Weight Watchers. She doesn’t get it!!! I don’t want to hear that she has 25 years of eating disorder therapy. I hardly eat anymore! Some of my friends have been supportive and great but other friends don’t get it either. I read something recently about sticking with those who are supportive and uplifting and letting go of the negative ones and those that create drama. It is so true. You know who is there for you and who is not.
My heart goes out to you and all of us who deal with chronic pain and autoimmune diseases. It is not easy.
Sending you a big virtual hug!
I can say from experience and from friends, finding out your food intollerances (not allergies) and avoiding them makes all the difference. Find a good natropath and get tested. With intollerances, you don’t have the enzymes to digest certain foods, so your body sees them as toxins and they plug up your liver and other organs. Stop eating them and your body can start to cleanse its self and heal, thus getting rid of the symptoms over time. I had really bad acne, rashes and weight gain. A friend had arthritis. When I stopped eating my intollerances, my skin cleared up and I lost the weight ( I tried all sorts of diets and nothing worked). My friend stopped and her arthritis went away. Everyone has intollerances but just don’t recognize it. When you get off them it’s amazing the difference it makes!
Been there, done that, Rachael! It still wasn’t enough!
I am in a very similar boat. I have good days and bad days but I am still WAY better without Wheat, Nuts and Soy than I was with them. With them I was non-functional the pain was so bad. I can take one Aleve and be almost pain free for 2 days now which I will accept. I don’t like taking it all the time however.
I would like to encourage you especially if you are Christian to read a book called “Feelings Buried Alive Never Die” By Karol Truman. This may open a door you haven’t fully considered. I know for me it was very eye opening.
I have tears in my eyes, I feel so the same way. All the same tries, a little better here and there, but not cured. No one even knows what is wrong. But I am tired, so tired and scared. 6 plus years of struggle. I, too, am thinking about the biologics as a way to get some quality of life for whatever time I have with this planet. Thanks a million for sharing. Hugs, tears and a wee smile, Robin.
God Bless you honey, for there is nothing worse than being in pain & getting no relief! I’m 53, active all my life, until three years ago. I was diagnosed with Celiac Disease in 2006. Have had it all my life. Also diagnosed with fibromyalgia in 2007. Sadly, none of the medications used to treat this work for me. Both Celiac & firo cause neuropathy & I have a severe reaction to what treats this, so I can’t use it. Also have degenerative disk disease in my lumbar & the treatments don’t work either, which is causing additional nerve damage. The longer nerve damage goes untreated, the more damage it causes. To add fuel to the fire, I had a brain anuerysm15 years ago. It left me with Traumatic Brain Injury & physical side effects. Everything mentioned above only complicates this, especially since I’m not as active. Now I also have esophigitis, because I’m in chronic pain. I don’t drink, no history of alcohol abuse, or any pill addiction. I eat extremely healthy, cucumerin, Tumeric, etc. Just like you without help. It’s unfortunate when someone is in chronic pain & the normal set of treatment isn’t working, & the patient has complied with all appropriate treatment, the doctor/doctor’s involved don’t take the next step in pain management. I don’t want to live on pain meds, but I also don’t want to continue not having a life anymore due to the amount of pain I’m in every day!!!
Great post, Megan. I can certainly relate to the situation and the frustration. Thanks so much for giving a window into your journey!
Thanks for your thoughts!!! I’ve been playing with diet and medications the past year or so and although my stomach feels much better I’m not convinced…yet…that it’s made a difference with my arthritis. I was diagnosed at the age of 5 and have had it every joint over the past 25 years. I’ve been on some of the newer drugs; remicade-I had a reaction to, Enbrel-worked for several years, Orencia-LIFE CHANGER for me! It’s a gift being able to get out and hike every weekend in Alaska!!! I hope you find some relief in the Enbrel!
Vee S. says
Thank you for this very honest, heartfelt post. As you can see from so many of the replies, you are not alone in this situation. I pray that the Lord will comfort you and give you Divine wisdom on what’s the next step for you to take to achieve the pain-free status that you so deserve. May it happen very soon. You have been a brave warrior in this battle. Time for some relief, right? Best wishes and hugs to you, Megan.
I cannot fathom the pain you feel on a daily basis, as I am a celiac without the debilitating pain you have.
Medication was something I was also reluctant to use when my thyroid started to go because of genetics. I ate seaweed and kelp all day and munched on ginger and chill is to stimulate my thyroid while I got more and more sick. My friends in the holistic world told me I wasn’t doing a good job – I needed to soak in iodine and eat more vegetable a certain way…etc.
I went to my doctor once my memory started to severely falter. He was a great integrative doctor who tried food over medicine almost always. But this time he said to me, sometimes the medicine is the only thing that will keep us alive. Without daily thyroid medicine, you’ll probably die. No diet will make your body reason otherwise.
I have never looked back, and I’m grateful someone developed a supplement that lets me live with my autoimmune disorder.
All of this is to say, sometimes diet isn’t the problem nor the solution. If you feel that it would help you live a better life, then who the hell is anyone else to tell you otherwise?
Thank you for writing such a powerful piece.
Nancy Holte says
Oh sweet girl, as I read your post this morning I nodded along, prayed, and sympathized. I know the struggle all too well. First off, it appears that I am not as sick as you are so please know that though I can’t totally relate, I have had my share of doubts and struggles. I have prayed and prayed, and eaten well (again, clearly not as well as you have) and yet there are days when I say, “what do I have to do to be healed?” Here’s what I’ve learned. I need merely do my best at eating healthy and exercising but the weight of my health rests on God’s shoulders, not on mine. He promises healing for His people. “Who forgives all your iniquities; who heals all your diseases.” Psalms 103:3 I believe that, even when it doesn’t appear that way in the flesh. I am proud of you for taking the steps to feel better. I know how hard that must have been to give in to the Embrel. I prayed for you this morning to be encouraged. God is faithful – that I know. Be blessed, encouraged and made well today.
<3 So proud of you, Megan! It's not an easy step for you, but I pray that you will find comfort, and have pain free days again, no matter the road traveled to get there.
Stopped by to say hi! Long time…. I am in the same boat as you. I feel your pain. 🙁 Managing my disease by eating incredibly clean for last six years has alleviated the load on my body, but is not enough. Boo! I haven’t updated my blog in some time, but my protocol with meds has remained the same. Sending hugs and prayers for relief!!
Hi Megan. I feel your pain. While my illness was not the same as yours, I went years will protocols of all kinds. What I finally realized…and what made the MOST difference…was my mind-set. I dealt with the emotional component of my illness. I looked at my inner critic and fearful voices. I dug deep and let all the bullshit that was keeping me sick — I let it go.
No, it wasn’t easy. It took time, but with that freedom and new mind-set, I have been healthier these last 6 months than I have the 5 years prior.
I didn’t read all the comments above, so I’m not sure if I’m repeating something else. But if you want to hear more about what I did, I would love to share it with you. (no sales…really. I’m being authentic here )
Take care of your self. Love yourself. Big HUGS to you.
Laura @PetiteAllergyTreats says
I had no idea your health has continued to be such a day to day struggle… I know you have multiple illnesses and am TRULY AMAZED at all you accomplished to during this time. Sharing your recipes and real struggles helps so many. If frustrates me to hear people are saying you aren’t ‘trying hard enough’?!
Thinking about you an everyone that struggles to keep their health in constant check.
Audrey @ Unconventional Baker says
Megan, I’m just reading this now and all I can say is BIG HUGS ♥
I’ve been in that same situation as well — for years. I’m mostly ok now. Diet plays a very big role in managing my health, but it’s not all. I’ve been on so many of these healing diets too over the years, and a lot of the time it was a big NADA in the end — and I invested EVERYTHING into doing things right. I’ve just come to the conclusion that some things just don’t work universally across the board for everyone in the exact same way. I did uncover things that were major dietary no-nos and aggravators for me, and that was very relieving. I also uncovered a balanced way of eating that works for my body in the process, and I’m grateful for that. But diet alone didn’t cure me.
The medical system route wasn’t very helpful to me and the options were all rather unappealing… What helped me most was a wonderful herbalist / nutritionist who specialized in my problem area was very skilled with finding things to supplement my body’s needs and I can say she helped me heaps. I’ve seen similar practitioners who didn’t do much for me in the past, or who even made things worse in some cases, but this lady was a miracle and she did a lot to restore my health back out of a pretty serious crisis. It was pricey, but to me it was well worth it. Just sharing that because I think sometimes we need external help — I tried doing it on my own for years, each time thinking I was getting somewhere just researching and doing things on my own only to end up up a blind alley. In the end I realized I just needed help, and I felt it was the right decision.
Anyways, just stopped by your blog to see what you’ve been up to and saw this and wanted to give you a big hug and to say hang in there!
Megan my friend. Thank you for this honest and raw post! I can understand how you feel and I have been there…I’m there most of the time! Listen, I take medication for Crohn’s (Lialda). It works…sometimes. But diet alone has never helped me in my situation 100%. I’ve been in remission for about 10 weeks now and I have no idea why. It’s so crazy and confusing. I am eating the same, taking the medications, living my busy-ass life. The only thing I have been doing is lots of daily stress reduction (stress is a trigger for me) and taking cod liver oil (that is honestly the only two additions this summer). But diet, I have no idea anymore what is going to help…and like you, I’ve tried it all girl. Sometimes you need to just go to the drugs and see if they will help. You never know. If it gives you relief, take it! And don’t beat yourself up for taking the medications…don’t feel like you are giving up or giving in. If you can feel good, do it! Science can be a good thing.
I will read the rest of your facebook to catch up and see how you are doing. But know you’re not alone. Like I said, most days I am in miserable pain and can’t leave the house, can’t be a mom, can’t go to work, can’t live. And it’s freaking depression.
Try anything you can to live your live. You have so much to give. I’m thinking about you!
Kristi Paskett says
Sometimes we can to earth accepting certain hardships, others we have put on ourselves subconsciously. Have you heard of energy healing? It’s pretty cool stuff. It clears up the energetic stance behind our physical issues allowing our body to heal. Have you read the book Feelings Buried Alive Never Die? That is a good book. I know about energy healing if you want more info.
Thank you for a very heartfelt post. I have been on biologics for over 10 years and they have given me my life back. And to those people who say to me “I would never go on those drugs” (this happened again just last week) you are so lucky that you are not ill enough. When you are ill enough you will probably beg to go on them. In my case it was, anything please for some relief. I inject Enbrel weekly with no problem and no obvious side effects. Humira was excellent for the first few years but sadly it became less effective after a few years. It is obviously your call but you may be pleasantly surprised.
Tiffany H says
Please, please, please read Louise Hay’s “You Can Heal Your Life”. She discusses the mental and emotional causes of illness and disease in the body. Going through chronic pain and illness myself, this book has been a godsend. Diet, supplements and lifestyle can only go so far, which I am currently learning. I did it too, looked for everything under the sun to relieve my chronic pain and heal me. The underlying emotional issues and negative thought patterns were not being healed, and so my body was not healing. I know this may sound a little weird to many of you but please take a look at Louise’s book. You have nothing to lose and everything to gain. Also, look up the documentary “E-motion” and “The Connection”. There is a plethora of scientific evidence to support the mind-body connection now, that our thoughts create our circumstances. The effects of stress on the body.
You can do this. I know it’s hard. We CAN heal, and more often than not (although we’re not taught this in western society) it has to come from the inside out.
I’m definitely feeling these emotions right now. I’m really having a tough time with food reactions right now. Wheat (or gluten) seem to be the principal suspects. I cut gluten over three years ago believing I reacted to it. Now, I’m dealing with exposures about every other day or so. I now believe I have a food allergy because I can take an antihistamine and feel better. My wheat allergy blood test came back as a Class 1, and a skin test I had for it nearly four years ago came back negative. No other allergy tests to this point have been positive at all. There are other foods I’m avoiding that have not been tested. I truly believe I’m reacting to traces from one of the foods I’m avoiding, and wheat makes the most sense. Over time I seem to get symptoms from smaller and smaller traces, and I wonder if it will ever stop. It seems no matter what I do or try, I keep having continuous exposures. Unfortunately, the antihistamine doesn’t help with all symptoms, and I still get nasty acne breakouts from them. I’m a 38-year-old woman, for crying out loud. I get depressed about this and want to give up too. I wonder if I’m going to have to accept that the conditions I’ve been trying to fix will never go away and that the exposures are always going to happen. I so badly want to go back to my old life. Thankfully, God has taken care of me, and I haven’t had to go long struggling to find causes of exposures. I hope I was able to help you feel that you’re not alone, that I’m out there struggling with you, although our issues are different. Your post was definitely helpful for me, and thank you for posting it.