Monday, July 24, 2017

Interstitial Cystitis, Bladder Spasms, and My Charmed Life

Interstitial Cystitis, I.C., Sjogren's Syndrome

It's two o'clock in the morning and I've been racing to the loo about every three to five minutes for the past three hours.

I'm wearing those Therma Care heat wraps. One in front and one against my lower back, but the chills won't stop.

My husband is snoring comfortably in the next room.

Part of me wants to wake him up. "Hey! I'm miserable!" But any human interaction right now would make me more miserable.

PEE BREAK!

Excuse Me.

Back. I went nine minutes that time. Between the breaks I mean.

It's not the non-stop peeing deal in the middle of the night that gets you. It's the pain. Liquid fire.


Did I mention that I'm in the Canadian wilderness? No electricity. No flush toilet. Yep. I'm doing this with a compost toilet. That wouldn't be so bad if it wasn't having a problem that makes the bathroom smell like that scene in Slum Dog Millionaire



It's to be fixed tomorrow. Meanwhile I'm going non-stop tonight and fighting dry heaves from the problematic compost toilet smell.

I do not feel sorry for me.

I just spent the past few weeks at a writer workshop on an idyllic island in Greece. 

I know, right?

Suffer, bitch. (I hear you.)

I am. I promise.

Why is it that when something great comes my way I feel I deserve suffering? Things have to even out, I suppose.

PEE BREAK.

If we count these spasms like labor, they're nine minutes apart. Unlike labor pains all I'll birth from this is a very tired morning. Also, the goal here is to have them further apart, unlike the baby-producing kind.

The heat pads aren't just for the chills. They're to relax the pelvic floor and hopefully help the spasms slow. 

PEE BREAK.

Nine minutes still.

Lucky for me I don't get this very often.

Over the years I've accumulated an arsenal of tricks to prevent bladder spasms. I've had this for years during most of which I had no clue what I had or why.

The symptoms are about identical to a UTI (Urinary Tract Infection). So the first year or two it happened I'd end up at the doctor for testing.

PEE BREAK.

About nine minutes still.

Damn. It hurts.

Anyway, when I went to the doctor it was usually after the spasms had stopped and nothing showed in an exam or urinalysis. Or worse, white blood cells showed and treatment for a UTI was usually broached.


I knew it wasn't a UTI. I'd had enough episodes and enough past experience with UTI's to recognize this as different. That's fortunate for me because UTI treatments can make my bladder spasms (caused by Interstitial Cystitis) worse. Especially if I got rote recommendations like drink cranberry juice. OUCH.



If it's I.C. you have, raising the acidity of your urine will cause more discomfort. More spasms. More pain. Keeping it alkaline is what helps. That can mean eating less acidic foods and more alkaline foods. 


In a pinch some baking soda dissolved into some water really helps Interstitial Cystitis. (1/4 tsp in about 1/4 cup of water.) Yuck. But it usually works.



There's also:

  • Drinking a lot of water.
  • Eating a high-alkaline diet (ask google).
  • Avoiding acidic foods.
  • Figuring out which high-alkaline foods bother you just the same (supposedly lemon is alkaline. So I made lemon tea with lemons tonight. Because I don't have any safe tea here. I used the entire lemon and the rind. About seconds after I drank it my bladder set itself on fire in protest).
  • Get some Prelief. It's like Prevacid, only instead of for heartburn, it's for bladder spasms. It's tough to find because I buy it all. But Amazon. It allows you to get away with eating more acidic foods. Woman cannot live on radishes alone.
  • My doctor recommends Marshmallow Root Tea twice a day. It helps to line the bladder and protect it. I know that makes her sound total California, and there are meds for this, but I don't tolerate meds well and the tea actually seems to work.

  • Find a Urologist who has experience with I.C. if you have it, because I'm no expert. I just happen to have it, so I'm over-sharing in case you do too.

My Urologist calls my I.C. "the junior kind", meaning it's not as bad as the full blown kind. Sufferers of that kind have my undying sympathy because this shit blows.

I have what the doctor also calls "a junior autoimmune" problem. (Sjogren's Syndrome.) Apparently the two go hand in hand sometimes. I've had them both for about ten years now. 

PEE BREAK!

That may have been about twenty minutes!

Woo-hoo! Life is good.

Celebrating that achievement I then fell asleep on the couch for an hour. The couch without mosquito netting. I may need a blood transfusion now. This is the Canadian bush.

My Junior I.C. comes and goes. The bulk of the time I can eat all those acidic foods sufferers shouldn't without any real problems. Until it is a problem. Then it's too late.

A good deal of my spasms happen for no discernible reason and when I've been doing everything right. 

At least this episode didn't kick in during an international flight. Or on a bus in the middle of Greece. Or a ferry. Or a train. 

It's easy to look on the bright side because this problem has plenty of room to grow. It only stops me from doing what I want a few days a year. 

So I'm grateful.

Usually I can feel it coming. I have a prescription for baking soda tablets (Sodium Bicarbonate). It's easier to travel with than a box of suspicious powder. I take them with plenty of water. With Sjogren's Syndrome drinking water is pretty much a part-time job anyway. I take life with plenty of water. After which I pee like it's my other part-time job. 


I'm judging all the bathrooms in the world because I've used many of them. That said, I've yet to meet a single one I wouldn't use in an emergency. My standards could not possibly be lower when it comes to bathrooms. That should be obvious considering the whole Slum Dog Millionaire compost one I've been weeing in all night.

But I've traveled some of the world, hiked the Grand Canyon, and have lived my life in spite of these issues. Because eff issues. You can't wait for shit to be perfect before beating a path to your charmed life.

Mind you this morning I'm cautious. (It's morning now. I fell asleep on the couch again. The mosquitoes ate the last of my blood. I hope they all get bladder spasms now.) I didn't portage out anywhere. My husband did. He's going to boat-hike-raft-drive his way into town. He'll probably go to Tim Horton's for one of those Maple Sugar Frosted Donuts with Crumbled Bacon. I dream about those. No, I've never had one. They're on the acidic foods list. I'm staying in my cabin eating unwashed celery and peeing in the grody compost toilet while waiting for my pelvic floor to get its shit together. 


At this point I can tell when it's wiser to be still. That doesn't stop me from going to the baseball game when I have tickets during a flare.

It's a calculated risk.

If I can sit in the blazing sun (heat helps) with plenty of water and a ladies room nearby, I carry on.

I don't want to let this control my life.

But I do respect it and plan accordingly.


A temperamental bladder is like taking a high-maintenance two-year old in public. You've got to plan and weigh your options. During a full-blown episode, when it feels like I drank napalm and a crazed Toy Fox Terrier is gnawing on my bladder like a squeaky toy he's trying to get the squeaker out of, then I stay put. 


And, no, I don't wear Depends. This isn't a sneeze and tinkle thing. It's liquid nitrogen in the bladder while that organ and its surrounding friends go all epileptic. It's pain, chills, and enduring.

Until it's over. 

When it's over, grab life by the girly nads and enjoy every non-spasming, pain-free moment.

Forget about I.C. Junior.

Just make sure you have your arsenal of anti-spasm and acid-lowering tools nearby, and go find your charmed life. And if you want to tell me about your bladder habits, the grossest bathroom you've peed in, or your charmed life, let's over-share below. 



2 comments:

  1. Go on Amazon and get yourself a PStyle. To hell with a compost toilet! Plus I will enjoy reading about your PSTYLE use.

    ReplyDelete
  2. Thank you for writing this candid and humorous article about IC. I'm just now beginning the tests and diet changes to confirm if I also have IC. Interestingly, I've learned that people who have IBS (as I do) and autoimmune disorders (as you do and as runs in my family) often develop IC also. Anyway, I already have a limited list of foods safe for me to eat because of IBS and now if it is confirmed I also have IC, the list of foods I can eat to avoid pain and other very undesired symptoms will shrink even more. For me, with having IBS, most fruits have been eliminated from my diet, leaving mainly berries for my daily fruit recommendations, and with IC I would probably have to give up all my favorite fruits, including strawberries (heartbreaking!) I've already had to avoid spicy foods, dairy products (have lactose intolerance too), sweets, most vegetables including broccoli, cauliflower and cabbage, and many other foods. I'm wondering what I can eat now without constant pain and other symptoms. Lol. But not so funny actually. I even have to give up caffeinated soda which I need to get through long work days! - I'm pretty sure I have some type of autoimmune disorder also and maybe getting that diagnosed can lead to a better treatment of both of my conditions. For now, I'm hoping we all get more relief soon! Save some Prelief for me on Amazon. Lol

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