My SI Joint fusion has been such a major event and recovery process that I have neglected to really write about the other major hurdle I’ve been tackling behind-the-scenes. Some may know, others not-so-much, that I’ve struggled with Interstitial Cystitis for years. This is (debatable-ly) an auto-immune disease of the bladder that almost feels like a severe UTI but is differentiated by a lack of bacteria that is present in UTIs. It’s a painful bladder disease. Disabling for some people, enough so that they qualify for Social Security Disability. My symptoms are usually frequency and intense bladder pain that keeps me up at night and hating my life at work.
I’ve been poked and prodded by many doctors, Emergency Room staff, and three prominent urologists with scary instruments and procedures. I’ve been on so many medications, I can’t even tell you all of their names!
This last intense flare put me in the Emergency Room again after four rounds of broad-spectrum antibiotics – TERRIBLE for your body! All of this while dealing with a looming major surgery for my pelvis, ugly insurance denials and appeals, and the struggle to walk. I was referred to another urologist and went through the gamut of testing again to be given FIVE prescriptions, a date for an electric pain stimulator to be surgically implanted in my body, and talks to schedule another surgery to repair my broken pelvic ligaments holding in my bladder. (When they said “push” when I was in labor…boy, you better believe I’m the Rockstar of pushing! Prolapse everywhere).
I was devastated. I literally broke down in the car after leaving the urologist’s office. It was just too much.
After I collected myself, I did what I do best. I started researching the crap out of this disease. And I (of course) joined more Facebook groups to talk to other patients and get an idea of what is working for them, not what Google or “doctors” want me to know. I don’t believe most of them either know or have my best interests at heart. They have agendas and drugs to push. Thankfully, I found a Healing Interstitial Cystitis Naturally group, and my whole perspective started to change from victim to Bladder Warrior.
I didn’t even fill those 5 prescriptions. I found the Whole 30 paleo elimination diet online, all of the program information available for free!, and I started reading. I read every page and dared myself to dream. It’s so restrictive! Can I do this? … but do I really want a pain stimulator surgically implanted inside of me? Isn’t it worth the effort to just SEE? I was already taking Cysto Renew (invented by a Urologist), Marshmallow Root, and Aloe supplements with some success but not full recovery. I’ve read so much about how the “IC Diet” doesn’t work for everyone and I just didn’t really believe that food could play such a huge part. Something had to give.
So I took a chance and allowed my mind to be transformed. (insert my husband saying “I told you so” – he’s a little crunchy)
I started the program and cut out dairy, grains, gluten, legumes, preservatives, processed food, and sugar. I decided that in order to find out what flares me, I needed to reset my body of all inflammatory foods. That left me with fresh vegetables, fresh fruit, meat, and healthy fats (like coconut oil, ghee, nuts, avocados, etc). I followed lots of paleo and Whole 30 Instagrammers for food ideas but for the most part, I kept it real simple. Breakfast usually looks like runny eggs over spinach or a sweet potato with prosciutto and half an avocado. Lunch and dinner are usually meat and vegetables with avocado. My favorite was seared fresh tuna and kale salad.
I kid you not, I literally had full symptom relief by Day 3. FULL SYMPTOM RELIEF. I couldn’t believe it!! I even stopped taking the natural supplements because I didn’t need them anymore. I was expecting it to take several weeks but no – POOF! Pain gone. Sleeping through the night. Hallelujah! Food. It was food. Stupid, stupid, stupid FOOD! And the anger boiled up inside of me that I was pushed drugs instead of a first line of defense. Diet. Pissed, really, and I hate to admit it but I was. It’s not a pretty sight when that happens because I can go to war when I find injustice.
I channeled that energy into helping people and sharing my story. It’s not going to heal everyone, but I think it’s a great place to start. Seriously.
Now I will be honest and admit that that in Week 3 I introduced a non-Whole 30 approved dressing to my salad – Tessamae’s Honey Balsamic. Omg. Ah-may-zing! It is still a paleo approved item but honey isn’t on the Whole 30…and I didn’t care, because it didn’t bother me and I loved it. I’m on my 3rd bottle. Tessamae does make Whole 30 dressings, so I highly recommend you check them out if you’re interested in the program. Good stuff! Whole Foods, ya’ll.
I discovered that cooking with coconut oil is so much better than plain ol’ butter and so fragrant and tasty! Another thing I discovered was how sweet fruit tastes when I removed all the sugar from my diet. I also used to have intense red inflammation in my face – gone. My husband remarked how my face wasn’t so red after a shower and I was like…wait, why haven’t you ever said that my face WAS red before now!? Punk. But he was right. It was gone. The acne-looking spots disappeared. So did the after-meal bloating. I also have more energy now and I really don’t need snacks at all…I am full from meal to meal. I’ll keep Whole 30 approved Larabars in my purse, but I usually don’t need them.
I also probably lost only a few pounds – maybe four – but I wasn’t going into this looking for weight loss, although that would be nice! I have to remember that I have been laid up in bed for weeks after my pelvic fusion surgery doing no exercise at all, so the fact that I didn’t gain weight is a huge miracle to me. So losing a pound or two is just fine to me!
The one thing about this is I’ve started to lose my hair at a faster rate, which is alarming, but happened last time I was gluten-free for a period of time. I’ve added a Biotin supplement to see if I can slow that down and the past few days have been a little better. Another challenge is eating out. It’s just difficult to find approved restaurants, so planning ahead is vital and I am so thankful that my husband is the chef around here!
I did have moments of the infamous SugarDragon trying to get me to fail and I wanted to drink milk so badly. But I wanted to feel better so much more that I stayed the course.
Now that my first Whole 30 is over, I don’t know where to go from here. It’s a little scary…the prospect of adding things back. I think I might stay mostly paleo and experiment with raw honey and gluten free bread first.
All I know is I am symptom-free. Will this last forever? I sure hope so. Is it possible it’ll come back? Sure. But I’m not afraid of it anymore. Now that I’m healing from my pelvic fusion able to walk more and more, and I have no bladder pain at all…I am starting to feel more alive than I have in a really, really long time.
People ask me what my goals are for the future. It’s just that…I want to feel alive. The rest will come.
(Thank you, Whole 30 and the myriad of Facebook warriors who have walked beside me…)
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