Things not to say to someone with a chronic illneess

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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I like Obamacare, and here’s why

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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Choices

I haven’t blogged for a long time. And mainly because everything I’ve wanted to write, everything I’ve had to say, needs to be told through this one lens. Which should be announced through a happier/cuter manner, but this is where I am today and how I’m gonna do it.

God willing and the creeks don’t rise, we’re gonna have a baby come January.

Let me back up now. Last time I wrote, it was about needing a job. Partially induced by the “OMG I’m pregnant we’re poor this baby is gonna need somewhere to sleep other than a dresser drawer!” But I also want a job. But John and I have made some choices in our marriage that means we’re gonna do things a little differently than the average people our age. It might come off as more “traditional,” but I hope that as you read you’ll see we made these choices because they were best for us, not because we wanted to fit into some patriarchal ideal of what a family should be.

First off, we got married young. Not had-to-get-our-parents-permission-to-sign-the-marriage-license young, or even MTV-would-want-to-make-a-reality-show young, but raise-a-few-eyebrows young. I was two weeks into my 24th year, and John was just a few months older. I’d been on my own for a few years (though full disclosure – my parents still pay my cellphone bill, mainly out of my mother’s fear that I’ll switch plans and then never call home. Don’t tell her Verizon is practically the only carrier in Montana. They also spotted a few plane tickets home, for primarily the same reason), and I wasn’t exactly moving out of my parents’ house into my husbands’.

We got married young not because we felt like we should, or to have sex, or to move in together (we had already lived together for a year in JVC), but because we were in love, we knew it was right, we weren’t old but were old enough to make this decision, and we wanted to. Had we met when we were 32 instead of 22, we would have gotten married then. Sure, some people thought we were crazy for getting married before finishing law/grad school, but in the long run, it made far more sense for us. Getting married at 24 is definitely not for everyone, but dating for 10 years wasn’t for us either.

The next big factor in this journey wasn’t a choice we made. I got sick. Being diagnosed with interstitial cystitis, a chronic bladder condition, wasn’t just an annoying matter of having to pee more often; it was life-changing. More problems piled on quickly after that (those I chose not to blog about, because believe it or not, they are more personal than my bladder!) and we spent most of our first year of marriage in doctors’ offices, researching treatments, reading books, and in physical therapy. It was stressful, hard, depressing, but we were happier than ever we had chose to get married.

Although IC itself has no effect on fertility, one of my extra problems, endometriosis, meant that we might not be able to have children, and other factors had potential indirect impacts on our ability to conceive. We had both always known we wanted to have kids. We felt it was our calling, that we were meant to parent and raise children. Again, not for everyone, but we knew it was for us. We had never planned on when we were going to have kids, and definitely didn’t plan on having them this early on, but when we realized it was something we badly wanted and weren’t sure was going to happen, we knew we didn’t want to wait 10 years to find out having biological children wasn’t a possibility.

So we went for it. And to our GREAT surprise, it worked.

Which means that we’re having a baby 7 months after I graduated with my MA and 5 months after we move, making the job search pretty difficult. We knew this was a possibility when we decided to have kids, but to be honest, we thought it was pretty remote. But more than that, we knew this was ultimately our priority. The timing means, however, that unless I have a job and am sitting at a desk in 2 weeks (not looking likely!) I won’t have a guaranteed maternity leave (with the state at least, where I am mainly looking. Not a lot of public health jobs in the private sector, let me tell ya). And if I do, it would be for 6 weeks. (You have to work somewhere for 12 months to qualify for the Family/Medical Leave Act where you can take a longer unpaid leave.) It must be my maternal instincts kicking in already, but the thought of leaving a 6 week old newborn at home/daycare isn’t something I can handle. (Not because I think it’s a “wrong” choice for anyone; I just know I couldn’t make it work.)

Since we made the decision that being home with a newborn is a priority, and time is ticking away, (and the economy sucks), finding a full-time job that I can take leave from before the baby comes is looking to be about zilch. Not because of my assumed pessimism, but because I have checked job postings every day for months and there’s nothing really out there that will work right now. I’m still waiting to hear back form jobs I’ve already applied for, but they aren’t looking too promising.

So the options I have left are to a) be a stay at home wife, and b) do part time/temporary work. While I’ve had some leads on some temp jobs (and even one interview!) they’re looking tough too. One goes from November-March, so that’s obviously out. The other starts a few weeks before my parents want to take a big family reunion trip. Because we couldn’t afford/didn’t have time to fly home this summer, and none of my family came to visit this year, it’s the only real chance to get together. It’s a bummer to have to turn down a potential job for it though.

So it looks like I’ll probably substitute teaching come fall. (Which does have a small potential to make more money than above temp job, if I work every day!). Does it upset my feminist heart that my husband will be the primary bread winner while I twiddle my thumbs doing part time work I’m overqualified for until the baby comes? Yes. But I chose to get married, I chose to go to school, I chose to move, I chose to have kids, and I chose to have them now. And this is the way it worked out. It’s not ideal, but we are thrilled that we have the chance to become parents.

It’s not a life for everyone. I’m sure there are people who will think I am an idiot and a disgrace to the feminist cause for not getting out there and using my degree before having kids. And there are others who will say (I know this because I’ve heard it!) “it doesn’t really matter; your husband has a job!”

It’s hard. I hate being unemployed. It’s embarrassing and frustrating, not to mention difficult financially. But I know it’s just a season. I am happy I finished my master’s before we had kids. I’m very excited that we are going to have a kid. And although the timing could be worse (I could have gone into labor during my defense!), it couldn’t be much worse.

But so what? I’d rather be a parent than an anthropologist/public health worker. And I can go back to work in a year or five. Sure it’ll mean starting a lot lower than I am qualified now, but it’s a sacrifice I chose to make. And while that doesn’t make things easier every single day, I know it’s the right decision in the long run. For us.

And we hope it will be the right decision for our little one too. You are loved. We are blessed.

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IC Friendly “snickers” bars

Easy-peasy lemon squeezy. Except no lemons here, this is IC (aka low acid) friendly. Not to mention raw foodie and vegan and gluten free too! Let’s all have a party and make some waitresses weep!

Recipe:

3 cups whole dates (yuck not those nasty rolled in flour things you got in school lunch. Real, whole medjool dates. Take out the pits though.

1 3/4 cup almonds

.5 cup carob chips, unsweetened. (trust me. Dig that bag you accidentally bought once out of the cupboard. I know, I hate them too. Usually) If you are lucky and can eat the real stuff, duh, use chocolate.

1 tbsp nut butter

1 tbsp coconut, shredded. (yeah that’s not in original snickers, but so what? Neither are dates)

Toss almonds and chips in the food processor. Throw the dates in if yours can handle it. Toss half the coconut in the bottom of a 9×9 pan. Press date mixture in. Sprinkle rest of coconut on top. Cut in squares. Enjoy. Snicker at people whose candy bars come from wrappers.

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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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Le Temps du Mois

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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Cottage Cheese, Iran, and my bladder

This is all Iran’s fault.

You see, I read the news a lot and I also watch Downton Abbey a lot. I’m also bored a lot of the time since my boss thinks editing an Excel spread sheet is good for about 3 days worth of work to do and my classes tend to be a little, um, easy. Well, except this year I finally get around to taking Introduction to Epidemiology, and WTF it turns out to be “hard” and require “real work.” Are you sitting there thinking “aren’t you working on a thesis and trying to get published too or something?” And to that I say, “don’t remind me.”

The combination of these three things – News, Downton Abbey, and Boredom, have resulted in me becoming convinced that Iran and Israel are about to start World War III and I will be left to feed our family on bread made from home made grain and the milk that comes from our goat. We don’t have a goat, but in this scenario we do.

This weekend our toilet broke. Not “oh just plunge it” or “turn off the water and reconnect that little chain thing” broke, thankyouverymuch, but wouldn’t fill up with water and according to google needed a new part broke. Luckily we were house sitting this weekend for a couple who has four working toilets. Remember, we are pauper students who have one, a fact that the Res Life center was wholly unconcerned about and kept insisting it was a holiday weekend and there was absolutely no way to get a plumber to our apartment. Now I realize normal human beings only use a toilet once every 72 hours (at least according to Res Life), but me having a chronic bladder disorder and all, I do not like to be apart from one at all if I can help it. I understand, of course, I would hate to rip someone away from their family’s President’s Day celebration, singing carols about Jefferson and Monroe and what not. Oh wait, I think they only do that at William and Mary…

So we spent the weekend over at the house we were sitting. At which I became bored, and decided I should learn to make cottage cheese. Again, to you who say “don’t you have stuff to do?” I say “blasphemers! All of you!”

And so I headed over to the nearest grocery store to buy some milk. The grocery store, which I am sure you are all aware of as it was immortalized in the song, “Apology Song” by the Decemberists, is the Orange Street Food Farm.  And the Food Farm has one magic corner known as the “cheap shelf.” While most of the products in the store are pretty mundane, there are always incredibly odd and discounted foods on the cheap shelf, ranging from Halva, a sesame candy, to pear juice. This trip, people were congregating and talking in front of the cheap shelf, a mortal sin to most who live in this town. Etiquette is that three, perhaps four at most, stand silently in front of the shelf, searching for that One Great Deal, taking care to not another’s view.

Whilst trying to peer around the chatty woman and her food cart (double sin), I spied it.

If you ever fly Delta and choose “peanuts” or “pretzels,” excuse me, but you are an idiot. Because the Biscoff cookies are really the choice of champions. Buttery, crunchy, flavorful – I love them. And here was a spread made of that very same foodstuff. It was like Nutella for people who can’t eat chocolate or hazelnuts. It was magic; I had never even dreamed of such a concoction!

I turned over to look at the ingredients and was not deterred by two simple words that usually leave me dropping a food in horror and swearing at the world: citric acid.  See, citric acid is not the friend of someone on a low-acid diet. But I reasoned it away, and gladly spread a few spoonfuls onto a baguette.

By the way I made the cottage cheese, and it tasted and looked more like mozzarella. Oops. Domestic fail.

Fast forward to that evening. We reasoned that our toilet works, kinda sorta enough, if you don’t flush the toilet paper and fill up the back of the tank with water. So we went home, watched Downton Abbey, and attempted to fall asleep.

Let me tell you something. I went to the bathroom somewhere around twenty times that night.

You know how people say, “Oh gosh, I ran like a hundred miles” or “I read a million pages for class tomorrow,” and they don’t really mean what they say? I mean this. I went to the bathroom about twenty times that night. I stopped counting, granted. But when you go to the bathroom about five minutes after you lay down on the bed for somewhere around 3 to 4 hours, you’ve hit the 20 mark. Trust me. There have been times where I have contemplated sleeping on a toilet. (There was actually a time in JVC where I slept in the bathroom. I fainted off the toilet and wound up with an IV drip. Oops.)

Long story short, if there Iran does ever get the bomb, I’m screwed.

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Celebrating the Holidays with Interstitial Cystitis

Life with IC isn’t easy, and unfortunately the holidays don’t make it any easier. Although I’m still relatively new to the world of IC, I thought I’d share my tips of how to get through with minimal stress, and I’d love hearing from more seasoned veterans as well!

Travel

Go easy on yourself with the travel. If you’re driving, don’t worry if you need to stop what seems like every other exit. Either warn your traveling companions ahead of time, or subtly turn up Perry Como every time he gets to,

Gee, the traffic is terrific! Oh there’s no place like home…

If you’re flying, choose an aisle seat. While I miss looking out the window, aisle seats reduce my stress level dramatically. No need to worry about climbing over someone who has fallen asleep every twenty minutes. Otherwise you might end up sitting beside someone who tells you as soon as you tuck away your bag that she just had a hip replacement and can’t stand up easily. True story.

If you’re like me, I can barely sleep when I’m on the road. Being out of my routine means that every little noise I could sleep through in my own bed suddenly wakes me up. And of course every time I wake up, I have to go to the bathroom. Which can mean going 12+ times in one night. You know; you’ve been there. Recently I started taking a sleeping pill when I travel which has worked for me. For you it might mean packing earplugs and an eye mask, or making time for ten hours of “sleep” instead of eight.

Food

It’s natural to associate Christmas with food – cookies for Santa, the goose getting fat, visions of sugar plums, gingerbread houses all around. And so when suddenly you can no longer have your favorite Christmas snacks (peppermint bark for me – nearly impossible to find without the chocolate; cranberry is what I miss most at Thanksgiving), it’s natural to be frustrated and depressed. Can you even open Christmas presents without a warm cup of coffee in your hands?

The good news is that there are plenty of IC-friendly alternatives that won’t leave you feeling too shortchanged. Peppermint, almonds, and white chocolate are all pleasure-savors for me. Here’s a few recipes to get you through:

White Chocolate Peppermint Cupcakes
Maple-Roasted Almonds (just follow the directions for roasting, skip the almond butter part)
Date Bread (substitute almonds for the pecans, and cut the amount of nuts in half. Beyond delicious)

I also highly recommend Safeway brand Hot (white) Chocolate. Definitely the best kind I’ve tried so far. Add a candy cane if you’re really feeling out there.

Make easy substitutions for your favorite recipes – chopped up dates instead of raisins, white chocolate instead of chocolate, almonds instead of pecans or walnuts, pears or apples instead of candied fruit,  a little extra cinnamon instead of cloves, garlic instead of cayenne.

In can be tough to eat when you are on the road or visiting friends and family. It can be exhausting to constantly ask for a run down of all ingredients of everything you put in your mouth. I usually try to bring my own food, which can be a problem when I fly home. Try packing some emergency granola bars and remember you can have your own feast when you get back.

Take it Easy

You won’t be able to do everything you used to. It’s a fact of life. While sitting through a two-hour mass maybe used to be the highlight of your year, you might find the hard pews torturous now. Walking around the neighborhood looking at lights might cause you shooting pains that you never had before. Getting up early with little ones on Christmas morning might be near impossible with your Elavil hangover. You might have to pass on the Yule log cake.  Life won’t be the same from here on out, and so Christmas won’t either. That doesn’t mean it has to be worse, but knowing that it will be a new experience will help ease disappointment.

Whatever this time of year means for you – end of the year reflection, family time, celebrating birth, lights, or long nights, take some time out to experience it. IC hurts – no one is denying that and no one is asking you to pretend like it doesn’t for a few weeks. Take some time to meditate, reflect, pray for yourself and others who are suffering.

Because at the end of the day, isn’t that what this time of year is all about? Not ignoring the hurt, but finding the little bit of light in the darkness.

How do you celebrate the holidays with or in spite of your IC? What are your favorite treats?

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The Hogsmeade

So, I like to knit. And there is this website that every good knitter knows – Ravelry. It’s this pretty amazing compendium of patterns, needles, books, yarns, everything you could ever need. I can take a book I have, look it up on Ravelry, see people who have knit the same projects in the book, and judge what colors or yarn I want to use and if I want to make any modifications.

A few weeks ago, I entered a cupcake contest on Ravelry (okay technically in the group “Hogwarts at Ravelry” – I’m a dork, I know).  I’ve yet to jump on the whole cupcake bandwagon; personally I would take a slice of cake any day, but I figured I would give it a go. And guess what? I won 3rd place. I think I win a free pattern or stitch markers or something like that.

So here you go, a wonderful fall, Harry Potter inspired, IC friendly cupcake invented by yours truly.

The Hogsmeade

Where do you go for a nice cold pint of butterbeer? Hogsmeade of course! These are pumpkin butterbeer inspired cupcakes. Personally I love how they look like a mini pint of butterbeer, with the butterscotch colored bottoms and the white, foamy tops!

 

(pretend this is an artsy DSLR photo with the cupcake off to one side, only three quarters in the frame, with a blurry background, and not just a photo taken with my webcam).

Here’s the recipe (makes 24 regular sized cupcakes):

Cupcake batter:

1/2 cup butter, softened
1 1/3 cups sugar
2 eggs
1 cup mashed cooked or canned pumpkin
1 tsp vanilla
2 1/4 cups all-purpose flour
1 tablespoon baking powder
1/2 teaspoon baking soda
1/2 teaspoon salt
1/2 teaspoon ground cinnamon*
3/4 cup milk
3/4 cup butterscotch chips

Beat sugar, butter, eggs and vanilla well. Sift together dry ingredients and add in slowly, alternating with milk. Mix in butterscotch chips. Fill lined (essential!) muffin cup tins three quarters full and bake for 20-25 minutes at 375.

Frosting:

1 stick butter, melted
2 cups confectionary sugar
1 tsp vanilla
1/4 cup milk (or less or more!)

Melt butter and add in sugar. Add in vanilla, Slowly add in milk. Remember – you can always add in more milk, but if you add in too much, you have to put in more sugar which can quickly run into a problem when you run out of sugar. 🙂

Butterscotch topping:

1/4 cup (1/2 stick) butter
1/2 brown sugar
1/2 cup heavy cream
1/4 tsp salt
1 tsp vanilla

In a heavy bottom pan, melt butter over medium heat. When the butter is melted, add in brown sugar and heavy cream and salt. Raise the temp until it the mixture boils for about 5-10 minutes. Take off heat and stir in vanilla. When it cools a bit, taste and adjust as necessary (add in a little more sugar or butter or vanilla!)

When cupcakes cool, frost and drizzle butterscotch topping on top. Enjoy!

• I’m allergic to pumpkin pie spices like cloves and nutmeg, so I didn’t try using the traditional pumpkin pie spice. If you want a more pumpkin pie flavor, try adding in a tsp of a pumpkin pie spice mix! Personally, I like it this way – it lets the pumpkin and butterscotch come through

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Falling asleep when you have Interstitial Cystitis

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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