I haven’t talked about it much on the blog, but this year my health crumbled and it has been rough. I have an autoimmune disease called Interstitial Cystitis and after four years in remission, it came back with a vengeance this spring.
At first I had some weird symptoms that I thought were just stress related, but not like I usually react to stress. I had panic attacks, dizzy/faintness, and nausea and then the cystitis came back.
Basically, the body attacks and thins the lining that protects the inside of the bladder, causing pain and discomfort. Kind of like a UTI that never goes away (which is what I was misdiagnosed with a few years ago.)
It’s hard to fall asleep because of the pain and it’s basically a huge inconvenience to life. And the frustrating thing is….there’s no easy fix for autoimmune diseases.
A few years back when I was trying to figure out what was going on, we had spent thousands of dollars seeing urologists (who only made it worse by prescribing me round after round of antibiotics which exacerbated my symptoms). But then I found an awesome chiropracter who helped me go into remission before and has been helping me make progress back to health this time around.
But it’s not easy because we’re not just treating the symptoms, we’re trying to fix my body.
As my chiropractor told me, imagine there’s flies buzzing around a trash can. You can get rid of them two ways: You could spray bug spray and to kill the flies, or you could clean out the trash can so they won’t come around anymore.
The last time I struggled with this, once I got on the right supplements I was able to recover very quickly, this time….it’s taking much longer. But I’m trying to remember that this is just going to take awhile and that I DID get better before, so surely with the right resources, I can do it again.
I am dreaming of the day I can drink coffee again because right now eating or drinking anything remotely acidic is painful for days afterwards. And that’s killing me because I NEED MY COFFEE but it’s not worth the excruciating pain.
It’s not a quick fix. We’re tackling heavy metal toxicity, candida yeast overgrowth, and other super fun issues. I know I’m making progress because the panic attacks, faintness, and nausea are gone and the pain is all that’s left. But to be honest, sometimes I feel really overwhelmed and discouraged and just break down in tears.
I think the most overwhelming part has been getting started. What CAN I eat? Where do I find resources for that? What supplements can help? What essential oils can I use to ease the discomfort? It feels like too much and I just wish it was easier and I had more guidance that didn’t cost an arm and a leg.
Here’s some of my goals for getting healthy this year:
Goal #1. Reduce Inflammation.
I just started taking a supplement full of turmeric and other anti-inflammatory ingredients that I ordered. Avoiding inflammatory foods was pretty much impossible on the road trip, but now that I’m settled I’m gearing up to do a few weeks of eating only anti-inflammatory foods to heal my gut and reduce the inflammation in my bladder. Autoimmune diseases seem very tied to issues in the gut and I definitely have some issues that need healing. I’m going to follow the diet in the ebook Heal Your Gut starting mid-September for 4 weeks. The author was hospitalized with autoimmune diseases and was able to recover her health through healing her gut.
Goal #2: Fix the candida yeast overgrowth in my gut.
This seemed to be the root issue exacerbating my autoimmune issues the last time they flared up. This will involve staying away from grains and sugars for awhile and then limiting them in future so I’m really glad I’ll have some cookbooks up my sleeve from the bundle with ideas for grain-free meals. I’m also taking some anti-fungal supplements.
Goal #3: Reduce acidity in my body.
I discovered recently that I was SUPER acidic and not in the normal range of ph levels. A body that’s too acidic is an environment in which yeast overgrowth can thrive and the acidity can wreak all sorts of havoc. I bought these alkaline drops for my drinking water, have been focusing on alkaline-forming foods (like veggies), and test my ph levels so often with these strips. After just a couple of weeks of trying to become more alkaline, I noticed a big difference in my ph levels.
Goal #4: Detox from heavy metals.
I didn’t know about the dangers of mercury amalgam fillings and got three in the last year right before I started feeling sick again.) After reading up on heavy metal toxicity and it’s effect on candida yeast overgrowth, my symptoms of faintness, panic attacks, and nausea make way more sense. I’ve been taking a heavy metal detox spray from my chiropractor and noticed a mark difference as soon as I began with it.
Goal #5: Reduce stress.
I’m pretty sure this year can’t be MORE stressful than quitting jobs, selling a house, and moving across the country, but you never know. I’m going to be leaving plenty of margins in our days to take care of myself and do some relaxing exercise. Also, diffusing my Stress Away Essential Oils from Young Living.
I understand being overwhelmed – that’s where I am right now. So much that even contemplating reading a bunch of different things in a bundle sounds like too much. I’ll be praying for you though and that your health gets back on track
I just picked out my top 10 favorite that seemed most applicable to me and I’m not stressing about finishing EVERYTHING. But they actually have a new Getting Started Interactive Guide PDF with emails to walk you through what’s in the bundle, so you know where to start and which tools match up with your needs and interests. I haven’t looked at that yet because I just wanted to pick out my top ten favorite and get started on them! Thanks so much for the prayers, Elizabeth!
Have you heard of the Whole30? You may check it out – it’s been known to help a LOT of health related problems (your mentioning the inflammation made me think of it). I’ve used it successfully to help my endometriosis. The website has a lot of info on it, and while it may seem overwhelming to start thinking about it, I found that about 10-15 days in, it becomes a habit and much easier. I pray for healing for your body, and heart!
I’ve done a few whole30s, but I think I need something even more heavy duty :/ Thanks for the prayers!
Hi Haley! Long term lurker here who is coming out of the woodwork just to let you know that I’m a fellow IC sufferer and I have so much empathy for what you are going through right now. I also think it is incredibly brave of you to blog about this issue. I have a hard time acknowledging my IC even among close friends and family. It can be awkward to talk publicly about bladder issues as a relatively young person, and sometimes even physicians are not empathetic or inclined to acknowledge the pain as legitimate because the disease isn’t well understood. I also know very well the challenge of carrying on with the responsibilities in the rest of your life while managing the pain, the effort it takes not to let the pain and discomfort cloud every joyful experience, and the struggle to retain parts of your identity beyond just being an IC patient when going through a particularly difficult period with IC. I have been inspired and challenged by you via your blog for several years now, and I am even more inspired by you in light of the bravery you’ve shown in addressing this issue for the world to see. I will be praying for you and thinking of you and hoping this flare period ends soon. I don’t know how you’re handling the IC struggle spiritually, but if you’re ever short on blog post ideas, I’d love to read about your thoughts on that because I haven’t found a good resource for that yet.
Thanks so much, Kate, and I’m so sorry you’re dealing with the same thing. I’m trying to be hopeful since I went into remission once. Maybe it can happen again?
Definitely! I’ve had both periods of extended remission and periods of constant flaring over the last six years since this whole ordeal started, and I’m currently in a remission that has lasted a few months so far. It’s always really rough when a flare period happens, perhaps because I tend to get so confident during the remission periods that this time I’ve beaten it for good. But for me, the worst part when this initially started was my catastrophic thinking that I might never be pain-free again. It’s still easy to think that way when I’m hurting, but I have gotten better about remembering that remission has happened before and will happen again. That alone helps reduce my stress and get the flaring under control. Especially if you read any IC boards, it’s easy to get the impression that IC remission is rare and/or fleeting. But I’m convinced that those boards don’t represent how common remission is because people who are in remission have better things to do than spend their time haunting IC boards. You’ll get this thing under control again, Haley. In the meantime, sending healing thoughts your way!
I just ordered my bundle! Looking forward to using it for my family! And Daniel’s cookbook sounds great!!
Yay!
I can totally sympathize with the feeling tired and frustrated part! I have Graves Disease (autoimmune hyper-thyroidism), and it’s been flaring up again and I’m just through with feeling crummy most of the time. So thanks for sharing about the steps you’re taking on your recovery journey and how the resources in the bundle are contributing to it. It gives me some hope that there may be some suggestions in there to help me too!
I’ll pray for your recovery and return to blessed (hopefully permanent) remission.
My best friend has Graves disease! I know it’s a constant struggle but she’s been basically in remission for awhile after making some dietary changes. I just hate how autoimmune stuff is chronic and even when it’s in remission, you have to be careful and watching out for it to flare up 🙁 Thanks for the prayers!
I just had a quick comment in case it’s helpful. I also had lots of bladder “infections” that weren’t helped by the antibiotics (which incidentally made me really sick) but were helped by sugar reduction. I tried the cranberry juice everyone recommended, but it hurt like crazy. What did help is strong coriander tea. It’s recommended in India for bladder problems, and it’s anti-inflammatory (not acidic). It might help reduce the pain while you get things worked out. You’d want 2T of whole seeds, boiled in a quart of water until it’s reduced to 2C, drunk every day. If it helps you, you would probably feel a good bit better within a week.
How interesting! I will definitely look into that. I don’t technically have an infection, but there are theories that IC is an under the radar infection that doesn’t show up in lab results. Definitely couldn’t hurt to try the coriander!
I’ve absolutely felt the same way! 🙁 I’m so sorry you’re suffering. I suffer with a similar autoimmune problem, and it is so hard to accept that there is no quick fix and no ignoring the problem either. I will pray for some quick healing and greater strength for you. In my journey of healing, my faith has seriously grown because of those really tough days. I wouldn’t wish for it, but there can be some beauty in those awful moments. I hope you’re able to cling to those! Thanks for writing about it, Haley! Many of us autoimmune disease peeps sometimes seem to live second lives and keep quiet about it. I’m grateful for your voice about this!
Thanks, Annie! I hope you feel better, too!
Thanks for sharing….
I am in remission for UC which sounds very similar to IC… in many ways. It’s so tough to get answers, find comfort and not feel isolated.
Hi Jill, I hope you don’t mind me replying to your comment. I had UC in 1994 and ended up having surgery but still experienced problems similar to the original UC symptoms. Last year the hospital suggested I try probiotics as research has found that a probiotic called VSL3 is really helpful. This product has been fantastic for me and has really helped. I think I still need to pay more attention to my diet but probiotics have definitely transformed my life. I hope you feel better soon. CLaire (Feel free to email me if you like)
Yes! Have you found any FB groups? I found one about natural healing for IC and it’s been helpful to follow along there and helps to not feel so alone with it.
May I ask what anti-inflammatory supplement you are taking? Where did you get it? Thank you!
Hi Sarah! I’m taking Liver Detox Support by Perfect Supplements. It has tons of turmeric in it which is very anti-inflammatory. I actually ordered it with the store credit from Perfect Supplements which is one of the bonus offers in the Ultimate Healthy Living Bundle I shared about: https://us154.isrefer.com/go/bundle/a654/
Girrrrrrrl…….I totally feel your pain on the auto-immune disease diet. I’ve had Hashimoto’s for over 13 years and back when I was diagnosed, no one even discussed changing my diet. Now I’ve been hearing about it for several years and I’m FINALLY trying to implement it into my life. And I feel so whiny, but it is really tough at times. I used to be gluten free, but then adding all grains and dairy….it’s just downright depressing at times, right? It’s always nice to “know” another woman going through it. It feels a little lonely when people don’t understand that I really am trying to implement these changes for a genuine health concern and not just some fad diet to lose weight. I really just want the brain I used to have years ago…. But really, will I ever get that back after having 3 kids????? 😉 I hope you start feeling better! Peace – Courtney
Oh yes, the food. Whenever anyone says, “oh, your kids are allergic to gluten? That must be so hard!” I try not to say, THAT’S NOTHING, haha. I could give up gluten forever but DAIRY? Ugh. 😉
Bless your heart and it takes a big one to share so many personal insights. I’ll keep you in my prayers and eat my carrots in honor of you and all that you are striving to accomplish.
laurie
Thanks, Laurie!
Happy Birthday!
I understand where you are food/health-wise, since I am there too. I have endometriosis, and long story short, I needed to make some health changes. For the past 6 weeks, I have been eating free of gluten/grain, dairy (except for plain yogurt), fruit (mostly), sugar, & yeast/fermented items to reduce inflammation, candida, etc.
I found several blogs/cookbooks helpful to get started, then I modified some recipes. Since I can eat meat, fish, veggies, eggs, nuts, I have searched through some paleo cookbooks (esp. Tammy Credicott), Danielle Walker blog and cookbooks (Against all Grain), a little from Once a month meals, Sarah Wilson (I quit sugar blog and cookbook), and the books Beyond the Yeast Connection by Warren Levin; The Yeast Connection (and related) by William Crook; and Candida Albicans Yeast Free cookbook by Pat Connolly).
I hope this isn’t overwhelming and hope you will feel better, more regulated, stronger and healthier!!
Those are great recommendations! I think what I may need to do is to go on a very limited anti-inflammatory diet for a month and then eat very strict paleo to keep the candida in check. Thank you!
I’m so sorry you’re dealing with health issues– I have such a hard time keeping my world together when I’m ill. I can’t imagine coping with illness and doing everything you’ve done so far this year (with the cross-country move and everything)! It’s great that you’re settled now and can focus more on yourself and healing. Good luck with your journey! I have been battling some (less serious) health issues that are cropping up in the form of eczema for the first time this year and I just bought the Healthy Living Bundle through your link in the hopes the I may find (and implement!) some strategies to help myself.
My kids all have eczema and it’s so frustrating! I hope the bundle helps. There are some great resources there and I THINK I remember that one of the bonus offer options is for an eczema cream. I’m planning to try it out with my kids! Thanks so much for ordering through our link, we really appreciate it 😉
Oh no, Haley! I’m so sorry to hear you have IC! I was dx’d with IC when I was 21 and it’s AWFUL! i used to take sooooo many prescriptions to help and had some horribly invasive procedures to treat it. I still take pyridium (the one you can buy that turns pee orange) when I feel a flare and before we travel cause airplanes and pain and constant peeing sucks! I’m not totally opposed to the prescription or OTC meds that helped me, but it’s awesome that there are natural remedies that can balance the root of the problem. I’m going to have to learn more about them because I’m recovering still from a flare during Mia’s pregnancy after I got a UTI and I never want to have to take those meds again because im not comfortable with unknown risks to pregnancy and lactation. I follow the IC diet but it’s hard because I love everything I can’t eat!! Wine…cheese…tomatoes… Caffeine…. Ugh! So many prayers for your remission. May it happen soon and be long lasting!
I’m so sorry you have IC. It really stinks. I’ve had it for 14 years, and it took a while, but mine is manageable now thanks to diet changes and overall healthier eating and living. You’ll get there. My best friend is one of those heating pads filled with corn or rice that you can pop into the microwave. Since my flare ups tend to happen at the end of the day, I go to sleep with it every night. My husband heats it up for me each evening after I crawl into bed…kinda like your Daniel with the coffee. ;o) Thanks for sharing your story and for helping to raise IC awareness a little more.
Do you know of any online resources or books available on kindle that talk about how to heal from IC? I am beginning to think I have it (or maybe overactive bladder, not sure). Everything I find online just describes symptoms, vaguely describes possible treatment options and says, “Go to a doctor.” These people have obviously never dealt with Chinese doctors.
I am also trying to heal from adrenal fatigue and leaky gut. I can have my family ship me supplements from home, but that is expensive. I have to have serious faith in whatever I ask them to send. We volunteers don’t have much spare cash lying around for things that might not work anyway.
Basically, just looking for a little advice in how to make lifestyle changes to help with these issues. It’s a bit frustrating that all this decided to get worse when I am 6000 miles away from home, but I’d like to do what I can to feel better and not have to retreat back to the US. Thanks! Hope you find your way to healing soon!
Hmmm, there’s a Healing IC site that is really good and you could check to see if You Don’t Have to Live with Cystitis and Along the Healing Path are available via kindle! There’s also some natural healing IC FB groups you could join! Hope that helps. It’s just the worst.