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I have received a lot of well-intentioned comments on my being diagnosed with interstitial cystitis over the past few years. Because it’s a rare and unknown disease, most people didn’t know what to say, and quite a few of the comments weren’t what I needed to hear in the place I was in at that moment. I don’t begrudge people for trying, but I thought it might help to share a few thoughts on things not to say to someone with a chronic illness.

1. I would die if I had to live like that.

No, you wouldn’t. This one I might hate the most, because to me it sounds a little like “your life isn’t worth living.” You would adjust and adapt, and it might suck, but you wouldn’t die. Chronic illnesses can require a lot of lifestyle adjustments, particularly for ones that aren’t currently curable or treatable by modern medicine.  Significantly changing your lifestyle is by no means fun, but it’s not deadly.

What to say instead: That sounds really hard. How are you adjusting?

2. Have you tried acupuncture, this doctor, this herb, standing on your head, sleeping more, seeing an astrologist, drinking dragon’s tooth tea? I have a friend of a friend who had something like that and they did this so you should too.

Unless you are a trained medical professional in that area, or you, your spouse, or child have had this disease – do not offer advice. Particularly if the disease is incurable/untreatable, because trust me, the person in question has already researched every legitimate and baloney treatment out there. There’s a pretty likely chance that the friend of a cousin of a friend you are talking about did not have the same condition anyway. Granted, this isn’t limited to well meaning friends/family/strangers – my urologist suggested I try a lemon juice cleanse. *Facepalm*

What to say instead: What are you doing to take care of yourself?
Or if you are really pretty sure you have some good advice/know someone who does: “Would you want me to ask my cousin who has the same condition for some advice?” or “I’ve heard a little about this if you want me to throw some things out there to try.” But don’t force it.

3. At least it’s not _________ (cancer, typically).

This is a big one. If you read any of this, read this one. DO NOT SAY TO SOMEONE “AT LEAST IT’S NOT….” Here’s why:

You probably don’t have a good understanding of what they are going through. With IC for example, the pain and influence on lifestyle has been rated to be on par with having cancer or being on kidney dialysis, two things which we know aren’t small potatoes. And here’s the thing, you don’t know where they are emotionally with their illness. In my darkest moments soon after getting diagnosed, I wished I had cancer. Don’t get me wrong, I am grateful I don’t and am not trying to minimize the pain of those who do. But in my head, at that time, cancer was either a) treatable, or b) fatal. When I was in the height of pain, the thought of living with that pain for the next 60 years seemed unimaginable. When I first went to the doctor with what I thought was a stubborn bladder infection that might need an extra dose of antibiotics, coming out with a lifelong illness that would never be cured was not a good feeling. Going for a screening months later that ruled out cancer, sure – finding out I didn’t have cancer then was a relief.

Here’s the other thing: you can’t compare suffering.  Yes, some suffering is objectively worse than others. But when your heart is full of pain – it is full. It doesn’t matter to you that you would be able to stand more pain if something worse happened, your heart still just feels full. You wouldn’t tell a mother who lost a child at least she didn’t lose all her children. You wouldn’t tell someone who lost their house in a fire that at least they don’t live in a war torn country. Don’t try to compare suffering, ever, in any circumstance. You won’t make people feel grateful for what they have, you won’t shed a happy light on the situation, you will only make them feel guilty for feeling bad for themselves. And sometimes, it’s OK to feel sorry for yourself.

What to say instead: How did you react to the news? Were you disappointed or relieved?

4. That sucks. Hey! Did I tell you about the annoying thing my co-worker did the other day?

Pretending nothing wrong is annoying too. Someone you care about just went through a huge life changing diagnosis (or is trying to find a diagnosis for a difficult illness). Even if you don’t “get it,” offering a little (or no!) pity and then just moving on isn’t helpful either. When I was diagnosed with IC, it was like being hit with a mac truck (says someone who has never been hit by any vehicle). My life would not be the same. My husband’s life would not be the same. I didn’t know if I’d ever be able to hold a full time job, if I could have kids, if I could ever travel to all the far off destinations I dreamed of, if I could ever eat my favorite foods again, go a day without debilitating pain, go an hour without having to find a restroom, or even just live a normal life. It was a big.f-ing.deal. And so I told my close friends, who ranged from sympathetic, to confused, to a little uninterested. When I’m with people I don’t know well, I play it off like it’s an annoying allergy .”Oh yeah, I just can’t digest acid properly so no beer for me!” But the truth is, it’s way more than that. (And the diet much more serious than some fad diet!) So it can hurt when people just ignore it too.

What to say instead: Hey, I’m really sorry about that. Do you want to talk about it?

In conclusion

If your words are well intentioned, you won’t hurt people by them. But please, don’t try to minimize someone’s pain or to over dramatize it. It won’t make them feel better. Be there to listen and offer love and support.

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John and I were thrilled to hear the announcement of the Supreme Court’s decision on the American Care Act. Well, were thrilled to hear CNN’s retraction of their first statement that the individual mandate was overturned. First because of the implications for our country, second because it is in line with our faith beliefs, and third for how it has already benefited our family.

Studying public health over the past few years has made me realize how important some of the provisions of the act are. We spend the highest amount in the world on health care per capita. And if I remember correctly from my public health classes, we spend some 5% of that on preventative care. As we all know, an ounce of prevention is worth a pound of cure. Literally – it costs far less to prevent diseases than to deal with them after they appear.

So a bill that focuses on prevention and expands health care to people who can’t afford it by increasing who is eligible for Medicaid? Of course I am for it. Public health and social justice meet. Let’s all celebrate! Academics of how improving the health of a nation benefits everyone aside, the Catholic Church teaches that health care is a human right:

In our Catholic tradition, health care is a basic human right. Access to health care should not depend on where a person works, how much a family earns, or where a person lives. USCCB

(Regardless of where you live – so even if you live in a state like Florida where your Governor wants to turn down federal money, his own taxpayers’ dollars,  you still deserve it).

So I was excited it passed. Even the individual mandate part. Would I have liked to see a different system, such as a public option? Yes, I would have. But what baffles my mind is why more people aren’t for it. It’s about personal responsibility and not passing on your burdens to others – the Republican mantra! And I agree – we should be responsible for ourselves when we can be. Lots of people without insurance do not pay their medical bills, which raises the cost of services on people who do pay to make up the difference. Ironically, the people who are hit hardest are those without insurance. Their bills are significantly higher than when you have insurance. But when everyone has it, everyone pays a fair amount. No screwing each other over allowed.

I digress. The point is – Obamacare has already saved us thousands of dollars. When we started grad school we were 24 and required to buy health insurance. (How come no one points out that public schools already mandate purchasing health insurance?? Socialism!) After the ACA went into effect, we could go back on our parents’ insurance. John did for two semesters, I did for one (my dad’s plan switched and wouldn’t cover anything out here. Little loophole we need to fix, otherwise its really only providing coverage for people living in 100 sq mile radius of their parents!). It didn’t cost my father-in-law a thing to add John, and for my parents, I believe it was much less than what an individual plan for me would have cost.

This saved us about $2400. That might be small potatoes for some families, but that’s about what we have spent out of pocket on my health care costs over the past two years. It’s about 1/6 of what I made as an RA this year. It’s another student loan saved. It’s affected our lives, and we have really appreciated it.

There’s more, of course.

I like that the health insurance companies can’t charge me more because I’m a woman (though this was already law in Montana!)

I like that breastfeeding support, including lactation counseling and breast pumps, are covered by insurance, since that is something we plan on doing. Along with a bunch of other prenatal/neonatal tests.

I like that an insurance company can’t turn me down because of my health problems. (Though I still wish they couldn’t refuse to cover them! But that’s something to work on in the future).

Romney’s plan (the new one, not the one that was the example for Obamacare) centered around making sure people could a) keep their health insurance plan, b) not be turned down for pre-existing conditions, c) give states power. I’m sorry, but a) I never have been so in love with a plan that I would be devastated when it switched. Not to mention no part of the law requires anyone to switch plan. Especially when employers can still switch your plan whenever they feel like it anyway. b) That’s already part of the law. c) As above, I believe people have the same rights no matter what state they live in.

I like this plan. It has helped save our family tons of money. It focuses on preventative care, is in line with principles of social justice, and benefits women. A plan that’s top priority is not switching health insurance plans doesn’t do anything for me. I’m happy with Obamacare. I want to see it improved, of course, but I don’t want to see it disappear.

How did you feel about the Supreme Court ruling?

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Money, money, money

Some days, what bugs me about having Interstitial Cystitis isn’t the big things – the pain, the diet, all that jazz. It’s the little things. The little things which add up into a big thing – money.

In one sense, IC isn’t that expensive. I pay about $20 for my directly IC related prescription medicines a month. But the money still adds up.

It’s the $43 co-pay on my sleeping pills I use once every few weeks because my bladder turns to flare when I travel. (I didn’t fall asleep till sometime after three last time I was on the road!) It’s the insurance company which requires a prior authorization because they want me to take the cheap pills that make me hallucinate. $43afterI got them to reduce the number of pills and gave them a $50 coupon. They left me with a “we can try to get you a refund” but I know that I would gladly fork over that muchto be able to sleep next time I can’t.

It’s the $120 co-pay because my pharmacy wouldn’t let me refill a prescription before I went out of town, and so I was left using another pharmacy which couldn’t get my insurance to cover my medicine.

It’s the $100-200 co-pays everytime I see a specialist because the school’s free clinic can’t deal with my problems.

It’s the money spent on supplements, vitamins, over-the-counter pain medicines that insurance doesn’t cover.

It’s buying organic instead of conventional produce. $2 a pound pears instead of 30 cents for bananas. $5 a pound for blueberries instead of $1 for grapes.  Red peppers instead of tomatoes. It seems that IC friendly foods have two things in common – they are low in acid and high in cost.

It’s taking last summer off so that I could concentrate on getting healthy (and getting my research done).

It’s getting take out on days that standing up long enough to cook seems impossible.

It’s buying my own insurance instead of remaining on my parent’s, because I have to see doctors out here too often to just have “catastrophe only” insurance and their insurance won’t cover any out of network providers.

These things all add up. And you know what the crazy thing is?  I have it easy. I have insurance. I don’t have cancer. IC can nickle and dime me all it wants, but we’ll make it through. But there are millions of other Americans without any insurance. Who can’t afford organic produce. Who don’t have the options I do. IC has taken it’s toll on us financially. Don’t get me wrong, we’re keeping up and doing fine (paid for my whole masters degree in cash & scholarships, thankyouverymuch), but it’s still not cheap. But even at the end of the day – we have it easier that millions.

Millions.

The Supreme Court is debating today whether or not the new Health Care reform law is constitutional, and you know what? I don’t care if its constitutional. Because it’s right. And there’s so much left to do. A new insurance company can deny me any coverage for my IC next year if it wanted to. That needs to go. And companies profitting off of my inability to sleep at night? That one can go too. Me crying at the pharmacy counter half an hour ago because the insurance company wanted to deny me coverage again? I’m ready to be done with that.  And even if this health care bill stays law, those things won’t change any time soon.

But we will have planted the seed the health care is something everone deserves. And we can continue to work from there. We can move away from a greed driven system to one that truly works for all Americans.

Because health care is a human right.

Because poverty shouldn’t be a death sentence.

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Which is French for “the time of the month.” Everything sounds better in French, non? Even though the French say “la course,” (je pense), that’s still what I call it in my head.

But first. First I feel like I should have some sort of disclaimer here saying something along the lines of:

Menfolk! Avert your ears! Turn your eyes! Listen not, lest you be defiled, ashamed, shocked at the mention of LA COURSE!”

Then, of course, the feminist in me thinks that men should stay and listen, that we as women should take ownership of our bodies, and they should not be freaked out by things like “menstruation” and “women’s issues” and “periods.” But let’s face it, men, and even a lot of women, are freaked out. And if you indulge my medical anthropological nature for a minute, I think that’s oaky. Mensturation is “taboo” not just because it is associated with women, but because it refers to something that once inside of the body but is not outside of it. And if you think about it, we have a taboo on most everything that comes out of the body – blood, poop, pee, snot, vomit, sweat, etc. Except babies. We’re generally okay with the fact that babies come out of our bodies. Because of this taboo, these things generally aren’t up for public discussion. And these things are taboo for a reason – they are generally considered “unclean” and in reality can transmit diseases. It’s probably been good for our society that we have thought of those things as “icky” cause we wouldn’t have lasted too long as a species if we went around eating our own poop. So as long as you’re leaving this page because you think “periods- yuck, I’ve been culturally indoctrinated to avoid substances out of my body for my own self-preservation” that’s fine.  But if you’re thinking “periods – yuck, women are gross and stupid,” then not cool, man. Not cool.

Moving  on.

I made a slight adjustment in my birth control regimen which has meant that I suddenly have started getting periods again which has meant I needed to restock my supplies. After one or two rounds of using conventional pads, which I repeatedly told my husband “felt like sitting on a chemical laden wet trashbag” I decided to ditch the Always in light of something new.

Enter….

Not the Diva Cup. Sorry ladies. Any of you who are left were probably just waiting for me to start writing about the wonderful amazing fantastic Diva Cup aren’t you? Sorry to disappoint. While it does sound fantastic (no waste! no chemicals! no frequent changing!) it won’t work with my specific internal structure. (And neither will tampons). It’s a bummer, I know. Plus, it seems that women who rely exclusively on pads are thought of having some weird hang ups about touching themselves or losing their virginity to a tampon. Not the case here, folks.

So what has been my solution?

Washable pads.

The verdict? So far so good. This particular brand is called Party in My Pants (eyeroll) and they’re actually pretty fantastic. They feel incredibly dry and are amazingly absorbent, despite being so thin. You can tell you are still wearing a pad, which makes me want to try out a few other brands. (I’ve heard good things about this Etsy seller). I decided against GladRags because it seemed a lot more work than the PIMPs. These don’t require any assembling or disassembling or special soaking (although I do rinse them out before tossing them in with the rest of the laundry).

I haven’t switched full time due to our lack of a washer/dryer and so I’ve been filling in gaps with Seventh Generation pads. I’ve been pleasantly surprised with them. The lack of chemicals is WAY easier on me than regular pads, and since I don’t go through too many in a month, they haven’t broke the bank.

Maybe one day I will switch to reusable pads full time in an effort to save the earth or something, but making these adjustments has greatly improved my experience ofle temps du mois.If you are up for it, I recommend one. If you are completely grossed out, I gotta point out that you probably don’t toss every pair of underwear that you’ve ever had a leak on, and it’s really about the same. But if that still isn’t your thing and you are looking to get rid of the wet trashbag filling, try the Seventh Generation pads.

So what do you use? Conventional pads and tampons? Diva cups? Sea Sponges? Just go camp out in a Red Tent for a few days?

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Boobs

Disclaimer: (since there seems to be some confusion here) In no way am I trying to diminish the mental, physical, and emotional pain associated with breast cancer. I am trying to respect it and argue that because it is such a serious disease, we should give money to research wisely and take prevention seriously, and also not forget about the many other serious forms of cancer that do not get as much attention. Like many of you I have lost people I have loved to cancer and agree we should fight against it.

Happy November. One of the reasons to be happy it’s November?

October, sorry excuse me, “Pinktober” is over.

Perhaps you have noticed the insane amount of pink products at every NFL game, a few college ones. Maybe your latte was died pink or your yogurt cups had pink lids. I’m guessing half the products I walked passed in the store this past month had a little pink ribbon in the corner. Onesies proclaiming “I love boobs” and adult sized shirts shouting “Save the Ta Tas!” have no doubt crossed your path at some point in the last few weeks.” It’s unavoidable.

It was Breast Cancer Awareness Month. And while I can’t imagine the pain people go through who are diagnosed with or watch a loved one be diagnosed with breast cancer, I am not particularly a fan of the fund-raising campaign.

But wait, you ask. How can anyone be against boobies? Everyone loves boobs! Save the boobs! Save the women!

I’m not. I love breasts as much as the next person (unless the person I am standing beside is a straight man. In that case he probably likes them a little more. But you get what I am saying). But I have some issues with the whole breast cancer awareness, buy everything pink campaign.

Fear Mongering

Who here has heard the statistic “One in eight women will be diagnosed with breast cancer?” Did you find yourself thinking “I know at least eight women but I don’t think any of them have breast cancer?” That’s because statistics are not always what they appear. The key words that are often missing is “in their lifetime.” One in eight women will be diagnosed with breast cancer in their lifetime.” Which means that by the time you reach 80 something, you will have had a one in eight chance. But for younger women, it looks like this (from cancer.gov)

  • from age 30 through age 39 . . . . . . 0.43 percent (often expressed as “1 in 233″)
  • from age 40 through age 49 . . . . . . 1.45 percent (often expressed as “1 in 69″)
  • from age 50 through age 59 . . . . . . 2.38 percent (often expressed as “1 in 42″)
  • from age 60 through age 69 . . . . . . 3.45 percent (often expressed as “1 in 29″)

It’s a little different than one in eight. But we usually don’t get the whole story. It’s not as dramatic, not as interesting, not as money generating.

Consumption

I’ll admit. I have a pink coffee mug. I bought it a long time ago thinking I would do something nice to save the world. But back then the whole pink phenomenon was still pretty new, it had yet to reach the massive proportions that there are today. Now I question it a bit more.

Take the whole Yoplait “Save Lids Save Lives.” For every lid you mail in (or redeem online), Yoplait will donate ten cents to Susan G. Komen for the Cure (footnote: up to 2 million dollars.) If Yoplait just wants to make a two million dollar donation, why wouldn’t they? Are they hoping that they won’t make it to the two million dollar mark? Or are they hoping you will buy more of their yogurt because it makes you feel good about the world?”

Buying a bunch of stuff we don’t need (like a pink plastic water bottle that increases your chance of breast cancer), shouldn’t drink (like pink alcohol, which could also increase your chances) probably isn’t helping anyone except corporate pocketbooks.

If you want to donate money to breast cancer research, donate money. If a corporation wants to donate money, let them donate money. There’s no need to buy a whole bunch of stuff for that to happen.

Sexualization

Do you know that the lifetime incidence of prostate cancer for men is one in six (source)? Or that heart disease is the leading cause of death in America (source)? Cancer is number two, and so while that shouldn’t be ignored, I think it is fair to wonder why we give so much attention to breast cancer.

Could it be….

I mean I hate to suggest it…

… because our society likes the boobs?

Seriously, when was the last time you saw a “Save the Prostates!” t-shirt? Breast cancer isn’t a bad cause to get behind, and there’s no rule saying you can only support the most dire causes. But it’s important to stop and ask why breast cancer funding is getting so much research, to look and see where that money is going, to see if there are other causes in need of attention that don’t have the well-oiled publicity machine that Susan G. Komen for the Cure runs.

Sexualization isn’t the only reason we pay a lot of attention to breast cancer, though I do believe it’s part of it. There’s a lot of diseases out there that need more research and awareness. Our medical system is a capitalist, for-profit system, which means it largely behaves like any other industry – it goes where the money is. There’s not a lot of incentive to research rare or unprofitable diseases. (Which is all fine and good until you come down with one of those rare diseases that no one has bothered to research a cause, treatment, or cure for yet. Then it gets on your nerves.)

Prevention

How much actual awareness did all the pink merchandise raise? Sure NFL players had flashy pink shoes, but did the game announcers remind people to give themselves breast self-examinations every month? Was the football link designed to raise awareness among men who can also get breast cancer? Where was the information about healthy eating or reducing alcohol intake? How much of the money is going to research the environmental causes of breast cancer? What can we do to actually prevent breast cancer, besides just buying a pink-labeled candy bar?

In Conclusion

It’s not a bad cause, and I wouldn’t fault anyone who feels compelled to give to it. But I would urge anyone to (before supporting any cause) ask where the money is going, how much of the money is going there, double check if we are doing it because it is popular or because it is right. And after you have decided that, by all means give, promote, raise awareness, save the world.

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I have this ankle….

Well technically, I have two. But I have this one that doesn’t exactly “work.”

Let me back up.

I was born and my legs came out all funky looking and so I wore casts for 6 months. At least that’s what my parents told me once. I’ve yet to see any proof of it. Apparently the doctors said something like I would never be able to run.

No one mentioned that to me, however, and I decided I liked running. I loved/dreaded running the mile in gym class twice a year. I dreamed about being a high school track star, though by that time my older sister had already joined the track team and in my stubbornness I decided to focus on soccer.

I was really, really bad at soccer. That and my high school only had a boys varsity team to try out for. In retrospect, I’m sure I would have made a JV girls team, but unfortunately that wasn’t an option at my tiny, tiny high school. After two years of trying out I finally relented and went back to my original dream of being a runner.

The problem was – I was slow. Super, super, slow. The best thing my coach could come up with to say about me at our annual dinner was “When Jackie came out for Cross Country, she thought she’d be last in every race. Well let me tell you, she was only last in one race. And that was just most of the race, she finally passed two girls at the end.” (of course he failed to mention there were 10 people in the race, but whatever).

Actually, I was a pretty decent 800 runner and could hold my own in a sprint relay, but unfortunately my coach didn’t figure that out until way too late in my career for it to really matter.

It didn’t matter that I was perpetually in the bottom third of every race, I loved it. I could go and not think. Or I could think about anything and everything I needed to. I could move. I relied on nothing, no rules, no balls, no quick moves or fancy footwork, to achieve. Just my feet and the ground.

When college came, running and I had turned our fall and spring relationship into an even more on again off affair. Without my coach pushing me to just run until my bad ankles had built up into strong ones, I would get discouraged after a few weeks of trying. And I would get slower. Much, much slower. To the point a 10 minute mile was an accomplishment.

But fast forward to my senior year of college. I had started running again my junior year, and while I took off the next summer for an incredibly  busy and travel filled few months, I started up the on again off again relationship sometime that fall or winter. By spring, I was running regularly, signing up for races and loving every minute of it.

I ran my way through graduation, through ending a long relationship, through a long summer full of despair, being flat broke, and eager anticipation. I was ready to run all the way to Washington state. I ran through 5ks and 10ks and over trails and rocks and started to train for my first marathon.

And then it happened. That terrible terrible moment. I swear I had flashbacks about it for months. Okay maybe years.

I fell off a sidewalk.

Seriously. All I did was step right on the edge of a sidewalk, and BAM. On the ground. Scraped knee, sore ankle. I had done it probably a million times before. My ankles like to just “go out” on me.

There was no swelling, no bruising. I took a day off and then I ran again. But it was a little sore to the touch and when I ran it felt a little sore afterwards. No biggie. I figured it would go away eventually.

So I kept running. Through another 5k, one I had hoped to finally break the 25 minute mark on. When I couldn’t get in any faster than 27, I figured something might be wrong. So I took a few more days off and then went right back to running.

My goal for that summer was to hit 10 miles. The night before I was to go on my first ever ten mile run, I went out dancing with my friends. One swing dance later, my ankle swelled up, ached like hell, and I could hardly walk on it.

The guy I was dancing with felt really, really bad. I don’t think I ever managed to convince him it wasn’t his fault.

So I stopped. I moved to Spokane and my ankle kept on hurting. Someone lent me an ankle brace which I stupidly used for months. If I didn’t, my ankle would be too sore at the end of the day to walk on. But I think relying on it for that long let my leg muscles atrophy and become even weaker. It was no longer running that borrowed my ankle, it was walking and standing.

One day I absent-mindedly rolled my ankle at work to stretch it out and heard a really loud CRACK. Something had happened – I could move it again. It felt 100% completely perfectly better. For about 10 minutes.

I went to physical therapy for a few months until they kicked me out. All of my “tests” like standing on one foot and balancing were satisfactory, and I couldn’t convince them that the pain was still there and still bothering me.

Now my ankle still hurts whenever I use it. If I go weeks without exercising, it feels great. If I go on a long hike, it aches terribly. I desperately want to run again but I don’t know if it will ever be possible. My ankle cracks and gets stiff and aches constantly. Doing yoga recently has made me realize how significantly different my left leg is from my right leg in terms of strength and flexibility.

So recently, I’ve started trying. Running 1/10th of a mile at a time. And maybe it will work.

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It’s been a long time since I’ve done an IC related post, but I’ve been thinking about doing this one for the last few days. Ironically, I haven’t slept that great the last few days and I think that is in part because I’ve been thinking about what I should write on this post as I’m trying to fall asleep. So for the sake on my shut-eye, here you are.

If you have IC, it’s probably pretty likely that you dread falling asleep. While other chronic pain conditions might welcome the hours of rest, for IC sufferers, sleeping (or trying to fall asleep) is somewhere along the lines of mild torture. There have been nights where I’ve gone to the bathroom somewhere around twelve times. Other times where I have been in a cycle of laying down and immediately getting up to pee not even a minute later because the pain is so sudden and sharp.

I more or less dread going to bed.

You might be tempted into one of those knock you out for eight or more hours medicines like Ambien. Beware, my friends, beware. (Okay ignore everything I have to say and talk to a doctor. I make no claim to have a clue what I’m talking about). Ambien was working great for me for a while; I took it primarily on an as-needed basis when traveling. Then one night I accidentally took it ten minutes before I went to bed instead of immediately before and WHAM-O. The walls starting shimmering, the clothes in the closet started waving at me, the earth started tilting.

For all you kids out their thinking that it sounds like fun, let me tell you something – it was. For about 2 minutes. Then I thought my hand had become grotesquely deformed and I spent the rest of the night puking in the bathroom until I fell asleep. So no, not fun.

SO without anymore to-do, here are my tips for falling asleep. These are pretty much IC specific since we all know things like “close the blinds” and “have a bedtime routine” and “huff lavender.”

Don’t try the whole “no water for 6 hours before bed” thing

I seriously saw somewhere not to have anything to drink after 6 pm if you had frequent urination. Um, yeah right. For one, if you have IC, you are probably on Elavil which means you probably have dry mouth which means the idea of going 5+ hours without water is awful. For another, one IC related theory is that highly concentrated urine is more likely to cause flares. So if you dehydrate yourself, your urine will be much more concentrated and likely to burn you. So keep sipping on water throughout the night, though obviously don’t chug your water right before you try to fall asleep.

Think about when you take your meds

Okay, I’m bad about this so I’m only assuming it works. I tend to take all my medicine right before bed which means I amchugging a lot of water right before I fall asleep. I assume this is bad. Sometimes I try to remember to take it earlier in the night but usually I fail at that. So you try and let me know how it goes.

Try icy-hot

I use a little icy hot on my pelvic muscles and lower back before trying to fall asleep. It helps with the pain and cramping, if you have that.

Take some pain killers before bed

I’m not a doctor so disregard pretty much everything I say. But I find taking some aleve or tylenol in anticipation of feeling pain when I lie down helps me fall asleep quicker. If anything just because then I don’t have to get up to take it when I inevitably find myself in pain.

Do some yoga

I’ve gotten bad about this lately, but I find doing a little yoga before bed can help me fall asleep as well as stretch out my pelvic floor muscles. I usually do this routine:

The standing squat (half moon squat) position is great for stretching out your pelvis.

Put something under your knees

This is my best advice. If you are like me, laying down is fairly painful. Something about the way that your hips tilt and squish your bladder. I find that putting a rolled up blanket or pillow under my knees tilts my pelvis so it is flat and minimizes the pressure on my bladder. It’s been a life saver for me.

Stop sleeping on your side/stomach

I used to love sleeping on my side and stomach (besides it being terrible for your neck). Now I’ve realized that laying on my side means the weight of my hip is crushing my bladder. Obviously on your stomach, your whole body weight is crushing your bladder. So stick to laying on your back.

Don’t try to fall asleep right away

For the past four or so years, I have gotten up to go to the bathroom at least 2 or 3 times every night before falling asleep. I used to fight it, try to make myself fall asleep despite the burning pain in my bladder, and end up frustrated. Now I realize that its just going to happen as a result of laying down. So instead of attempting to doze off the minute my head hits the pillow, I give myself a few minutes to let my body adjust to being horizontal. So I use that time to talk and pray with my husband, get my lying on my side needs out of the way, and then I go to the bathroom one (hopefully) last time.

Have compassion for yourself

Sometimes it’s not one last time. Sometimes its the first of many. That’s just the way IC is. I try to take a non-judgmental approach to my frequent trips to the bathroom. Letting myself get angry, annoyed, and frustrated only adds to adrenaline which keeps me up even more. Letting it go and just doing it helps me remain relaxed and ready go back to sleep.

 

Don’t look at the clock when you get up

I have no tips for staying asleep all night. I get up to pee at least 2, often 3, sometimes 4, times a night (to all you pregnant women rolling your eyes at me – I’m not pregnant. This is what my life is like without a baby crushing my bladder!). So you will probably get up and go. And whenever I do, and look at the clock, I think “Crap. I’ve only been asleep half an hour.” Or “crap, I have to wake up in 2 hours.” But avoiding the clock means my mind never really kicks into gear and I fall asleep  quicker.

Clear a path to the bathroom

Every night before I fall asleep, I check my bathroom path to make sure it is free of debris and obstruction. Nothing like running into a table on your trip to the loo at 3am to make yourself hate your life.

Use Badger Sleep Balm

This is not really IC related, but 1. I love the smell. 2. I love the picture. 3. I love badgers even though I’ve never seen one and John likes to tell me they can attack and probably kill me.

Please share any tips you have for sleeping soundly!

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