Wednesday, June 27, 2018

Interstitial Cystitis and Other Auto-Immune Bullshit




There are things I want to do in life and curling up in my glamping cabin in Carolina with raging Interstitial Cystitis isn't one of them. Traveling is one of my favorite things to do. One thing I worry about when traveling is getting hit with one of the gremlins of my mostly manageable autoimmune problem (Sjogrens Syndrome).


Interstitial Cystitis is the one I worry about when flying. I make sure I get an aisle seat in case I need to get up twenty times an hour. Sitting too long on a hard airplane seat or getting dehydrated can kick off a flare. Normally I use that as an excuse to upgrade my economy seat to one of the cushier comfort seats.

Delta Comfort you rock!


Sometimes I can't swing an upgrade. Don't you hate how money is so damn finite? Me too. When I can't manage it, I suck it up and fly in the hold or wherever, but I go anyway. Because I'm not letting this thing stop me.


I figure I can be miserable anywhere. It might as well be in Greece!



Or Cleveland, or Charlotte, or wherever the muse takes me. Sometimes that is right here at home in the shire. 

Since dehydration can also be brutal, I drink a ridiculous amount of water when traveling. It's ironic because I probably get up as much to wee that water back out as I would when I'm having an I.C. flare. At least it doesn't feel like lava. 

Is that TMI?


We all have bodies. We all have trouble when they malfunction. Talking about my aches and pains bores me. But I have a point here.

When my mother-in-law, Gummy, was struggling with dementia and Alzheimer's, the one reaction that upset me most was when it was treated as something slightly embarrassing. It was bad enough that she felt ashamed of her mental shortcomings, but to have it treated as something other than a horrible medical condition was more than I could stand.

Not talking about Interstitial Cystitis because of flaming bladder spasms or the need to pee doesn't sit well with me. I will speak of embarrassing truths. When a friend with M.S. whispers to me that she can't go out today because she's having an I.C. flare, and that her doctor told her it's the new normal—I will say what's in my heart and experience.


I don't believe that. There's a lot you can do for this problem. 



Sometimes nothing will work. But sometimes dietary changes or simple over-the-counter meds can make a world of difference. 

So if you have Interstitial Cystitis or bladder spasms (or even frequent trips to the loo), and you've seen a doctor and know it's not a UTI, here's a list of what works for me. I hope it helps you!


  • Some baking soda dissolved in water. It can quickly lower the acidity of your urine. That burning feeling usually goes away when I do this. (If it works ask your doctor for sodium bicarbonate tablets. It's easier to travel with. You don't want to carry a vial of white powder into another country.)
  • There's a product called Prelief. It's OTC, but as I've said before it's difficult to find in stores because us I.C. people buy it all. Meds and I don't work well together, but this is as innocuous as Tums. 
  • White Tums. My urologist recommends these. Again it can help lower the acidity of your urine.
  • Marshmallow Root Tea is purported to help line the bladder, soothing those tiny cuts that make acidic foods bother it. You have to drink it daily.
  • According to The Better Bladder book, I.C. might be an allergic reaction that causes inflammation. They recommend Nettle Tea because it's a natural antihistamine. Since Marshmallow Bark didn't work for me, I've been trying it.
  • Thermacare stick-on heat packs are magical. I get the ones for your neck, but I don't put them on my neck. The heat helps relax the pelvic floor muscles. Go ahead and try to wear it through airport security if you need more excitement in your life. (Tip: It might be smarter to put it on after you go through!)
  • A hot bath is excellent too. 
  • Sleep. You have to sleep. 
My last flare was particularly brutal. Stress definitely makes I.C. worse. At least I now know I can fly during a major flare. I can do this miserable thing and still have my amazing life. While it was awful, it was good to know I could handle it. 

For a couple days afterwards I ate mostly alkaline. That meant celery-cucumber smoothies. There are only so many foods high in alkaline. Unfortunately you can't subsist on them for long. That's when Prelief and baking soda come in. 

For me I find that these life hacks work—except those times when nothing works. 


I try to be scientific about this, but I'm not a scientist. With this problem you never really know if something is working, or if the problem was naturally subsiding. But while in the middle of a wicked flare, when it feels like you drank napalm and everything in your pelvic floor is spasm-ing and sharp, if you take a couple Prelief with a drink of blended cucumber and celery and it lessens, I say you're onto something.

My spasms tend to ebb and flow. I have to be very careful about what I eat. Caffeine drinks, chocolate, and red meat are usually on my hell no list. They are brutal for me. Of course I cheat at times. You know those times when you think you've got this figured out, and having two Chai Lattes suddenly seems like it should be okay? Maybe you imagined or assumed that connection the last ten or twenty times you had it.

This is also known as being a slow learner.


The best I've dealt with this problem is when I don't eat flour, sugar, or red meat. After reading more about auto-immune problems and I.C., I decided to go completely gluten-free. It felt like jumping on a bandwagon, but I do know I have a wheat sensitivity that I like to ignore during pancake season. 

The thing I notice when I eat bread and pancakes is that I get tired. It feels like after Thanksgiving dinner. A nap is necessary. 

It's only been a couple of weeks, but being gluten-free combined with Nettle Tea seems to be helping. At least I haven't had hives or rashes, or even an I.C. flare lately. 

Going sugar free is really tough. At least it is if you're a sugar crack-ho like me.


My body objects. The part of my brain in charge of sugar-highs (about 80% of it I think) keeps reminding me where they keep the chocolate at Target, and that summer is made for ice-cream, and life is short, and what about cake?

Day two and four were headache days this past week. I recognize those headaches as the kind I get whenever I detox from sugar. Lots of water and an occasional Advil helps me. 

Kicking the Sugar Demon deserves its own blog. I'll get back to you on how well I'm doing in a month or so.

Today my brain had a lot to do, but it managed to realize that there is no gluten or sugar in certain kinds of chicken wings.


You have to give your sugar-addicted brain credit when credit is due. Despite the headache, it managed to come up with that. Way to go brain! I gave it some wings. So far so good.

Blogging from the mosquito-infested wilderness
WITH NO SUGAR
Like I said previously, how do you really know what's working and what is coincidence? I just keep at it, tossing in plenty of setbacks and mistakes. But the important part is that I keep going with it. If I can manage to travel with flaming I.C., I think I can handle living my life without sugar and gluten. Again. I mean it this time. Again. 

If your brain has managed to come up with some excellent life hacks when it comes to giving up sugar or gluten, please share! With I.C. I can't have artificial sweeteners at all. So I can't even try to fake my brain out. Not that it'd fall for that. 










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