The Search for "Why?"

Why me??

I think a lot of people with chronic pain of any type search for "the why". Why me? It's a normal thing for people to wonder. I think every thing happens to every person for some type of reason. We may have to suffer on the path to find the reason, but there is a reason nonetheless. Even people without chronic, invisible pain all suffer from some sort of pain at some time or another (emotional or physical). There is a reason for all of this too.

So, me...just a typical woman in my late 20s. Why would God plague me with problems that can be so frustrating and  difficult at times? I have come up with two answers.

The first reason I believe God chose me to have IC is because I am not easily embarrassed by who I am. Many of you blog readers only know me from the web, but in real time I am kind of a unique person. On the outside, I look like a typical Jersey girl: I love purses, fashion, nails and make-up. I don't like those things to fit in, I like those things b/c I think they are awesome. On the inside, I am the complete opposite. I am so quirky I need my own quirk zip code. I'm not quirky as a form of rebellion, I am quirky b/c I truly just like what I like and don't care if it doesn't make sense to anyone else.  I watch indie flicks with twisted plots instead of blockbusters, I think that age is only a number, I am obsessed with the 80s and 90s even though it is the year 2011, I believe in ghosts, I wish I could drive to all 50 states in an RV...the list goes on.

IC is a difficult disease for many to discuss b/c to explain it well and to explain all of its effects you need to talk about what goes on in both the bathroom and the bedroom---two topics considered taboo by a lot of society. I don't care about what is taboo and what isn't. I care about people, I care about health, I care about justice. So many people are out there suffering in silence. I don't like the way many doctors treat IC patients and I am not afraid to say it. I think the little quirks that make me the person I am, give me the personality to speak up about IC.

I think the second reason God chose me to have IC is b/c he also blessed me with the gift of communication. I am a natural writer and communicator. I was a Communications major in college and aced all of my classes with ease. I have been writing for fun since I was 11, was published for the first time at 15 and was paid for my writing for the first time at 19.  I am very blessed in a lot of ways and I truly feel that God wants me to use my skills to speak for people who for whatever reason can't have a voice right now. As bad as IC is at times, I have a lot to be thankful for in this world. I may not be rich, a size two, blonde or famous, but I have a lot of the blessings that matter most. I have a family who loves me, a fiance who understands me and friends who have my back through thick and thin. I have had the opportunity to get a great education and I have access to healthcare.These are all things which should not be taken for granted for one minute. I have gone through a lot of bad times in my life just as everyone else has, but I have come out of each bad situation learning a lot. 

I think one of the biggest lessons I have learned in life is to never stop fighting for what you believe in and I believe that IC is under researched and that women are not treated correctly by all doctors. I think that I have it in me to make a difference. I want to be around for the day when each IC patient can get the right medications for his or her own personal symptoms. I want to meet a girl who gets diagnosed with IC after one or two doctor appointments instead of 15. I believe as long as there are people in the world like me willing to tell their stories, that these things will happen.

I am not perfect and will surely complain about my IC from time to time, but deep down I know I am not suffering for no reason. 

So when you're ready, take a look at your biggest obstacle in life and ask "why me?" The answer may not be easy to find, but the answer is definitely there.

Jennifer's Journey: Is it the Weekend Yet?

Sorry for the delay in making a new post. I have had a lot going on. My creative side feels inspired today and so does my activist side. I have decided to start a little fictional story as part of my blog. I will still make "regular" posts, this will just be an addition. The posts that are fictional will begin with the title: Jennifer's Journey. Jennifer is a fictional character with interstitial cystitis. I am creating this story to help people see the challenges that an IC gal can face through out the day without having to put my entire daily routine out there or the daily trials and tribulations of anyone else that I know.

Coffee or flare??

I hope that if you suffer from IC or any chronic medical condition that you can relate to Jennifer. If you are just on this blog to learn or to support a friend or family member with IC I hope you find out some new details on how a person with an IC has to live life sometimes.

The story will also have some drama, romance, chaos and all that good stuff too, so I hope you enjoy.

Please check out this first installment of Jennifer's journey...

Jennifer's Journey, part 1: Is it the Weekend Yet?

The alarm goes off at 7:00 am. Jennifer hits snooze. She would give anything to stay in bed. Last night was rough, she woke up three times to pee between midnight and 4:00 am. Two snooze buttons later Jennifer finally pulls herself out of bed and makes her way towards the bathroom. Urinating is always her first task for the morning. Jennifer would like nothing more than to wear jeans to the office for casual Friday. Sadly, she opts for comfortable yoga pants instead that she attempts to pass as dress pants daily. People in the office tend to gossip that Jennifer is a clothing snob for not dressing down in jeans on Fridays. Jennifer is far from a clothing snob. Jennifer doesn't wear jeans because it hurts too much.

Jennifer gets to work on  time at the advertising agency and plops down in her cubicle. As her computer boots up she looks at her co-workers' desks. She sees a variety of coffee cups and Red Bull cans everywhere. Jennifer's tired body craves caffeine badly. Jennifer battles back and forth in her head pondering if she should drink a cup of coffee or not. If she doesn't drink it, she will feel sleepy all morning. If she does drink it, her bladder may flare. "Screw it ", Jennifer mumbles to herself as she makes her way towards the office Keurig maker. She figures one cup won't kill her. At least it's Friday, so if her bladder flares she can sleep in tomorrow.

Jennifer gets down to work and adjusts her IC cushion that she has been passing off as a back pillow for the last three years. She munches on some graham crackers so that she doesn't have to take her first round of medications on an empty stomach. During a 10:30 meeting, Jennifer watches the clock constantly. The invite said it would only last fifteen minutes and it has already been 45 minutes. Jennifer has to pee so badly it hurts, but she doesn't want to be rude and get up while someone is speaking. When the hour mark hits Jennifer has no choice but to quietly slip out for a bathroom break. Her bladder spasms were getting so bad she would have nearly passed out if she didn't urinate soon. Her three least favorite co-workers Becky, Melissa and Tiffany give her dirty looks and whispers for "wasting time in the restroom yet again. "

When lunchtime rolls around, Jennifer heads to Wendy's with her two best work buddies Jack from accounting and Jodie, an administrative assistant. They are the only two in the office who know about her IC. Jack and Jodie are talking about how super excited they are for the weekend. Jodie has plans to go salsa dancing with some friends and Jack and his partner Richard have a weekend booked at a Vineyard two hours outside of town. The two ask Jennifer what she is up to. Jennifer plans to stay in tonight and rest her usually tired body because she has big plans on Saturday night: she is having her first date with Cliff, a 37 year old business owner she has been chatting with for three weeks on Match.com. Jennifer hates dating because of her IC, but at 31 she knows she has to start putting herself out there if she ever wants to meet the right person, get married and have kids. Jennifer is both excited and nervous. She tells her pals she is contemplating canceling due to nerves. Jack, who is very into astrology and tarot cards, tells her that she better not cancel because he has a feeling that Cliff would change her life forever. Jennifer laughs and takes a sip of her beverage. "Only time will tell," she says to her pals.

On the ride back to the office, Jennifer ponders more about the weekend and life. She realizes that everyone else is always in one giant race to the weekend finish line. It's almost like making it to Friday at 5:00 pm allows people to push a freedom button. Jennifer doesn't ask  "is it the weekend yet?  " everyday at work like most of her pals. She knows no matter what day of the week it is, she will still have IC.

Check back soon for more information about IC and to find out how Jennifer's first date with Cliff turns out.

Things NOT to say to Someone with Invisible Pain

Invisible pain, no matter what the underlying cause, is difficult to live with. People with invisible pain do not wish it upon anyone else and don't even expect everyone to understand, but we do like to be treated with common courtesy. You would be surprised at the the number of inappropriate things that can come out of the mouths of some people.

So if you know someone who lives with chronic, invisible pain here is a list of things NOT to say:

1. "But you don't look sick"---Yes, we realize that we don't look sick. It's called invisible pain for a reason. We do not have a rash or a broke bone, but our pain is very real.

2. "I don't get how you're sick, you're out right now"---We can not lock ourselves in the house forever. We need sunshine, air and people sometimes. Sometimes we even go out in pain because we don't want to be lonely or we want to attend events important to our friends and family.

3. "You're pretending to have pain to get attention"---This one just makes me sick. If we wanted attention, we would think of a much less embarrassing way to get it.

4. "My friend has such and such disease, she seems much more active than you"---No two people are the same. Even two people with the same illness.

5. "You're making it up to get pain killers"---You would be surprised to learn how difficult it is for people with terrible pain to even get narcotic pain medications these days. Even if people do get it, it is usually a last resort after most other treatments have been tried. In addition, most people with chronic illnesses have to take a laundry list of non-narcotic medications that cost a ton of money out of pocket a month and have lots of side effects.

6. "It's all in your head"---Muscle pain and nerve pain are real. They are NOT psychiatric conditions. They are caused by legitimate physical issues.

7. "When will you be better?"---Um, let's try we have no clue, possibly never. Chronic conditions are chronic for a reason. They have no known cures yet. Many do have treatments that can trigger temporary remissions, but then the pain can come back. Just because someone has a good day, good week or even a few good months doesn't mean that the person is "better  ".

8. "I don't think that you should eat that / drink that / do that"---We know our diseases better than you do. Just because your sister's cousin's best friend has it, doesn't mean that you get it. 

9. "Why do you go to the doctor so much? You look fine to me"---Hmmm....let's see we must just adore co-pays, tests and needles...NOT. 

10. "I wish I had the luxury of being sick"---Chronic pain is not a luxury, it's a nightmare. We work harder to do everything and anything from housework to grocery shopping to driving to showering it's all harder when you are in pain. Once and a while we may need a short nap in the middle of the day. It's not because we are lazy or spoiled or think we deserve to take a take a nap...we physically pass out from the pain and our laundry list of treatments.

Imagine...Welcome to the Life of an IC Patient

It's not easy to imagine living in the shoes of another person. But let's do a little activity. Close your eyes and imagine...

Imagine waking up in the middle of the night in intense pain because you have to pee.

Imagine having to give up your favorite food because it now makes you sick.

Imagine having to cancel plans with friends because you are in so much pain you feel nauseous.

Imagine being too embarrassed to to tell those friends why you are cancelling, so people begin to stop inviting you places.

Imagine being let go from your job because you took one too many days off for a doctor's appointment.

Imagine doing chores and errands in 10 level pain with a smile on your face because you don't want your kids to know how  much you're hurting.

Imagine not being able to watch a movie, write an email or complete a board game without having to get up to pee, sometimes more than once.

Imagine having pain so bad that some researchers have compared it to the pain level of a patient on dialysis or a person in the early stages of cancer, but medical professionals deny you pain medication. 

Imagine having to wake up everyday wondering if you will be in pain or not.

Imagine not being able to wear jeans anymore.

Imagine going to 10 doctors over a span of two years to get a diagnosis. 

Imagine being 35 but taking more medications than the average 80 year old.

Imagine being exiled by a friend, family member or significant other who doesn't think that your pain is real.  

Imagine always having to know where the nearest bathroom is every time you go out. 

Imagine having an illness with no cure and no one exact form of treatment so every day feels like a guessing game.

OPEN YOUR EYES. WELCOME TO THE LIFE OF AN IC PATIENT. Doesn't sound like too much fun does it?

It's important to note that there are all different levels of IC so not every IC patient may experience everything on this list, but this list is a realistic representation of what IC patients can go through. If you know someone with IC, ask them to take a look at this list, they will probably find at least 5 items on it that pertain to them personally. 

If you have IC I encourage you to comment and to add onto this list.