Along the Healing Path

Two months ago I started a new job that’s had me working on some days for more than 12 hours, and with all the stress, lack of exercise, and poor diet, my bladder has definitely taken a turn for the worse. This can’t go on. I need to make a real change. I think may even need to quit my job and make healing my full-time goal.

Today I ordered the books Along the Healing Path and To Awaken in Tears, both by former IC suffer Catherine Simone.

I’ve found a lot of positive reviews of these books in IC chatrooms, and I figure it can’t hurt to give them a read. Evidently the author suffered with Interstitial Cystitis for a long time before finding a way to recover through natural means and she offers her advice on how to find relief in these books.

I feel like I’m at the end of my rope. In August, I’ll have had IC for five years. That’s a long time to have chronic pain. Some days it’s like a background noise that I’ve just gotten used to, and other days I wonder how I haven’t lost my mind by now. The pain, when it’s at its worst, radiates up into my abdomen and down into my groin and into my thighs. It can feel like someone took sandpaper to the inside of my bladder and then filled it with vinegar. It can feel like nerves are on fire. If I had a dog in this much pain I wouldn’t hesitate to have him put down. No one should have to suffer like this. The worst part is there is no medication that helps, other than marijuana, and all that really does is offer a distraction. Today is Saturday, June 20, and it’s a beautiful evening and I’m home alone in sweats on the couch, trying to think of a plan to get well and trying to distract myself from the pain with Netflix instead of going to a party that in another life I would be having a great time at with friends and a nice cold beer in my hand. I’m just exhausted in every way.

But enough of the pity party. I know there are steps I can take, and I just haven’t been focusing on them. Ordering these books seems like a good step in the right direction. I need to do a real overhaul of my lifestyle, by focusing mostly on diet and stress levels. I saw a dietician a few weeks ago, but that was not the major breakthrough I was hoping for. While a dietician is a good resource for common and well-understood conditions like obesity and diabetes, most dieticians don’t understand IC or know how to create a specific meal plan that focuses on healing this condition specifically. At least, that was the experience I had. The meal plan I got is great for having a balanced diet – the proper ratio of macro nutrients – but that’s not ultimately what I’m looking for. I don’t want to simply lose a bit of weight, or know that I’m getting the right amount of protein, carbs, and fat. I want to use food as an actual source of healing my body’s chronic pain condition, which I’m sure is related to my immune system, and which I’m sure can be healed through natural means, and especially a specific diet. A dietician doesn’t know enough about this to really offer a solid plan, I guess.

I think a naturopath maybe is a better option. For now, though, I’m just going to have to go back to eating two or three very bland, simple things, like steel cut oats with unsweetened almond milk, and basically do my own elimination diet for a while. I’m feeling extremely unwell these days and so very frustrated. Seeing my doctor the other day, I explained that my pain levels are off the charts again, and all she could do was offer sympathy and a prescription for valium to deal with anxiety. This is not an answer. I will find one, though, and I’m crossing my fingers that I will find something in these books I’ve ordered.

Have you read Catherine Simone’s books? Had any luck with her suggestions?

Breaking up with Coffee (again)

That’s it. I’ve had enough. I’m done. I had my last coffee today. For real. This is my public declaration of the end of this unhealthy relationship. I’ve been psychologically addicted to coffee for way too long and I know even the occasional dark roast is doing my bladder no good. So I’m making a clean break, once and for all (or at least until my bladder is happy again!).

I’m sure many people will shake their heads and wonder how I don’t just quit the addiction, since anyone with IC knows coffee is one of the worst foods to aggravate the bladder, but I’ve got a serious attachment… scratch that… I HAD a serious attachment to the black bean. It’s my happy place. I stopped drinking alcohol cold turkey last summer and it couldn’t have been easier, but it’s been a lot more challenging to let go of caffeine. But it’s time.

I need to radically alter my diet. And one of the most important ways I need to do that is to cut out the major bladder irritants and replace them with alkaline alternatives.

I saw my doctor today and she said the request for a dietician referral for me was denied for a second time, despite her carefully worded request. I was pretty bummed. I really don’t understand why they won’t see me through medicare, but I’m not defeated, just delayed. I’ll have to make an appointment and pay out of pocket myself, but I think it’s important that I invest in this. The only snag is I’ll need to wait till I’ve got my financial situation sorted out. So it won’t be right away, but it will be soon.

In the meantime, I’m going to have to just come up with my own very simple, basic meal plan and make a concerted effort to stick to it. I’ve really been struggling lately with my diet. I’ve been eating pretty acidic foods – including the occasional coffee – and it’s not doing me or my bladder any good. I don’t feel great, my pain is not abating, and it’s a vicious cycle because the more sorry I feel for myself the more I want something comforting… like ice cream, or a dark roast… some of the most acidic foods out there, and then it just makes me feel worse. So enough is enough. I need a personalized alkaline diet plan, and I will find one, with or without professional support.

Stay tuned as I do some research and post about diet changes in the next week. 

Get thee to a dietician!

If you have Interstitial Cystitis, the FIRST thing you should be doing is working on eliminating irritants from your diet. This is not an easy thing to do, though, especially if you do an elimination diet and want to make sure you’re still getting all the essential nutrients.

This is where I’m struggling currently. Although I’m trying to eat bland foods and avoid the major triggers for flares – caffeine, alcohol, tomato, citrus, sugar, preservatives and additives, etc. – I would say my pain this week has ranged from a six to a nine. What I really need to do is figure out maybe one or two totally basic, yet balanced meals for breakfast, lunch, and dinner (and a couple of good snacks), and then eat ONLY these meals on a rotating basis. I am not a foodie, and I don’t like grocery shopping or cooking, and frankly, I find the whole process of feeding myself a real drag. Coupled with the fact that EVERYTHING seems to cause me bladder pain, I just hate the stress of it all when it comes to food.

What I really need to do is get some help in figuring out what to eat and come up with a very simple meal plan.

Yesterday I saw my doctor for a follow-up to the allergist visit. The report came back to my doctor to inform her I don’t have allergies but that I would “benefit from a dietician consultation.” No kidding! I’m really glad the allergist noted that, because my doctor had tried to refer me earlier this year to a dietician and the board, or college, or whoever does the referring said I didn’t qualify as someone in need of nutritional counselling. Seriously, if I don’t need to see a dietician, who does?

Well, my doctor agreed it’s imperative I get some nutritional counselling support and said she’s going to try again by sending another request for referral using more emphatic language. I really hope it works this time!

What’s the most basic, IC-friendly meal you can eat? What’s the best meal plan for someone with IC who is not a foodie and doesn’t know much about cooking? If you’ve had success with an elimination diet or just a few very simple meal ideas I’d love to hear what works for you (or what doesn’t)!