Friday, January 28, 2011

You must be Fine, "You Look So Good"

Being told that you look good is a compliment most of time.  But believe it or not, there is a time when being told you look good can hurt.

When you're a chronic pain patient, it's hard for people to understand what you are going through because most likely your pain is invisible.  Many chronic pain patients will have run ins with people who accuse them of faking or exaggerating their pain because they look so good.

One personal instance I had of this was in 2009 in a urologist office.  I was 25 and in 10+ pain.  I was sitting in the waiting room with my mother. We were the only females there.  We were also the only people under 70. Despite being the youngest person in the room, I was the only person sitting on a special seating cushion.  The waiting room was crowded.  The receptionist called me up to the desk.  "The doctor is backed up today," she told me.  "I think we should move your appointment to another day."  

My eyes swelled with tears as I pleaded with her.  "I am in so much pain and I have waiting several weeks for this appointment," I told her.  "Please don't move my appointment, I don't mind waiting."  

"But you look so good.  You must be fine." she replied.  I stood there, stunned.  

Luckily, my mother's lion protecting her cub instinct kicked in and she got in the woman's face and demanded to speak to a nurse who saved my appointment.  

As I waited, I sat there puzzled and sad.  Maybe I did look fine.  I didn't have any make-up on or anything, but my nails were done.  I had a matching sweatsuit on and puma sneakers.  Although I felt like death, I still wanted to look somewhat put together in public.  I feel like I have every right to take pride in my appearance.

I wish that more people would realize that people with chronic pain have good days and bad days.  But no matter if we are having a pain free day, a day where we are in so much pain we can't stand up or something in between, we are still a person.  We are still the same people we were before diagnosis.  So yes, if we are in our 20s and 30s and have chronic pain, we are still going to wear the styles of anyone else in their 20s or 30s who doesn't have chronic pain.  We shouldn't have to wear a housecoat and slippers to go grocery shopping just so people believe we are sick.  Our pain has taken so much from us, we will not let it take our sense of passion and self-pride too.  

Our parents teach us as children never to judge a book by its cover, but yet as we grow into adults so many people will do just that. I am sure many of those 70 year old men had lots of medical problems, but so did I.  My skin may have been less wrinkled, my clothes may have been a little more vogue, but my insides hurt all the same. 

So the next time you go make a snide comment about someone you know, that they "look too good" to be sick, remember that pain does not discriminate.  
I loved nail polish, handbags and over-sized rings long before pain was a part of my life and I will continue to like these things no matter what the future holds.  A road filled with chronic pain is a hard road to travel.  We may as well walk it looking our best.

Sunday, January 23, 2011

The Day I Cried Because I DIDN'T Have Chlamydia

Most people would be very happy to have a test come back negative for a STD.  Believe it or not, there was actually a time when I cried when my STD test came back negative.  Yes, a part of me wanted to have an STD.  Why?  Because it would be an answer.  Why?  Because it seemed better than a disease with no name.  Why? Because it would be better than people accusing me of making up my pain.

I would like to share this personal story so that people can see how seriously we need more doctors who are educated on pelvic pain.

I was a typical woman just shy of my 25th birthday when I woke up in excruciating pain.   It was like nothing I had ever felt before.  I could not sit down with out feeling like a sharp needle had been jabbed into my girl zone.  I often had a lot of urinary tract and yeast infections in my teenage years.  No doctor could ever tell me why.  They would just say I was prone to them, give me the medications and send me off on my way.  So when I woke up with this pain, I just assumed that maybe it was a UTI.  The pain was way worse than any UTI that I had before, but there really seemed like there would be no other explanation. 

I went in to see my gyno who thought that I had a yeast infection.  She started me on the cream for that.  I was in pain for several days, the cream was not working.  That's when I got a call from the gyno, my cultures were negative for yeast.  When I told them I was still in pain, I went back in for a urine test.  Since my white blood cell count was high in my urine, they started me on antibiotics.  Three days later, I was still in 10+ pain and I got another call, I also did not have a urinary tract infection.  What the heck??  What else could be causing this pain??  The gyno felt it unnecessary to do a STD test on me as I tested negative at my last regular appointment and had not been with anyone since.  So I asked her what I should do about my pain.   


I was in shock.  I couldn't stand, I couldn't sit, I couldn't walk.  I was in constant pain and couldn't think about anything else.  I was in pain first and a person second.  How dare this woman accuse me of making it up.

Disheartened, I went home defeated.  One night a few days later, I was laying on the floor screaming in the middle of the night.  The pain was no longer 10 on a scale of 10, it was more like a 20.  My family had no clue what to do and took to the ER where they did a battery of tests: pelvic ultra sound, urine test and STD panel.  Even though I had no reason to believe I had an STD, they said it was standard procedure to test for chlamydia in women my age.  When they found nothing on the pelvic ultra sound, they sent me home.  They refused to even give me pain killers because some of the nurses thought I was making it up.  The doctor said I would receive a call in a few days with the results of my chlamydia test.  

I went home more upset than ever.  I felt like I was dying and no one would help me.  How could I live the rest of my life unable to move due to pain?  That's when I started to fantasize about chlamydia and how wonderful it would be to have it.  Maybe my last test was wrong I tried to convince myself.  Maybe I caught it from an ex-boyfriend and no doctor ever realized I had it.  I found myself actually hoping and praying that I had a STD.  I know it sounds crazy now, but at the time, it made sense.  Chlamydia may have a stigma, but it had a name and a cure.  If I really had it, with just one phone call, I could have a name and antibiotics and be cured. 
Two days later, the phone rang and I got my answer.  I did NOT have chlamydia.  

That's when I broke down in tears and cried for an hour.  I felt so stupid, I was crying because I had no STDs.  That is the news that most people like to hear.   I didn't know what to do.  I was in pain and no one believed me.

After spending three months in level 10 pain, completely crippled, I was finally properly diagnosed by a specialist with Vulvodynia and Pelvic Floor Dysfunction.  I started to get treatments that reduced my pain.  The struggle I went through makes me want to share my story.  I never want to meet a young lady who breaks down in tears, wishing for an STD because no one believes her pain.  

Thursday, January 20, 2011

Dear Pelvic Pain, Why Can't We Just Get Along and Sit Together??

If you are suffering from pelvic pain due to Interstitial Cystitis, Pelvic Floor Dysfunction, Vulvodynia, Pudendal Neuralgia, Irritable Bowel Syndrome or any other chronic condition you probably now find difficulty in doing some simple tasks that most people take for granted.  One of those things is sitting.  Yes, sitting.  Sitting and pelvic pain are not friends.  If you are stricken by this issue, here are some suggestions for making sitting a little more comfortable.

There are many seat cushions available.  A typical donut usually is designed for someone with back problems and is not often too helpful for women with pelvic pain.  You need a more specialized cushion.  I recommend the one sold at the ICN Shop online. This cushion is designed differently from the donut leaving a gap where the perineum (that pesky spot between the vaginal region and anal region) can rest comfortably.   I personally own two, one for my car ( I NEVER drive with out it) and one which I have for chairs.

 The Total Pillow

The Total Pillow recently advertised on infomercials is awesome.   While I love the ICN cushion for working and driving, I often found it difficult to bring to restaurants.  The main difficulty is because you can really only carry it like a regular pillow or put it in a bag.  Since the Total Pillow has a hole in the middle, you can easily put your arm through it to carry it.  What makes it different than the donut, is that the Total Pillow is mold-able and you can position it to your own comfort.  I recommend buying the blue jumbo Total Pillow rather than the original brown one from the initial infomercial simply for the fact that it is more attractive to bring out in public.  Now don't get me wrong, no matter what kind of pillow or cushion you use, you will usually have SOMEONE asking why you are sitting on it.  Luckily, most of my good friends already know why and I have gotten to a point where I am happy to explain my condition to others (It takes a long road to get here, totally not an overnight thing).  I know it can be scary at first to bring a cushion out in public, but if you have been home bound due to your pain, it is well worth it to give it a try. 

Say Good-Bye to Jeans

If you have pelvic pain, jeans are the devil.  That hard crease in the middle and your girl zone will not be friends and the jean will make sitting even more uncomfortable.  But never fear, there are tons of ways to still look cute without relying on jeans. Leggings, gucho pants, yoga pants and sweat pants are all essential parts of a pelvic pain patient's wardrobe.  Leggings can be dressed up or down making them very versatile.  If you need pants for a business or formal situation, you would be surprised how well black yoga pants can pass for dress pants when put with heels, a nice top, a blazer and jewelery. Get creative, pelvic pain does not have to be a pajama bound sentence.  Not that there is anything wrong with pajamas, we all love pajamas, but sometimes we want and need to get dressed up.

Since no two pelvic pain patients are alike it may take some trial and error to figure out what works for you.  For some people there is a solution where they can sit in zero pain.  For others, it may only reduce their pain level from an eight to a four.  But we all know that when flaring, even a pain reduction is a blessing.  Hope these tips help.  Happy Sitting! 

Sunday, January 16, 2011

You, Your Bladder is on Fire

Many women know the horrible burning and stabbing pain that comes with having a urinary tract infection (UTI).  For most women this probably happens once every two years and gets cured after a few days on antibiotics.  Imagine now feeling like you have a UTI all the time.  That would really suck wouldn't it?  But that's not the worst part.  Imagine there were no antibiotics available to cure your "UTI".  Why?  Because you don't actually have an infection.  Just all the symptoms. For someone with a normal bladder who is reading this, the scenario probably sounds bizarre and miserable.  For someone with Interstitial Cystits (IC), this is daily life.

IC patients have irritated and inflamed bladders.  There is no infection, there is no cure.  IC can strike out of no where.  Some patients have long histories or repeat UTIs and other urinary problems.  Other people may have had relatively normal urinary functions before the on start of these symptoms.

There is a medication called Elmiron that helps to repair the bladder.  With long term use, Elmiron can help some IC patients show improvement in symptoms.  There is also an IC diet (which eliminates acidic food) which also helps some IC folks to manage symptoms.

What is important to remember is that no two IC patients are the same.  Some patients are in constant flares while others have symptoms that come and go.  Some IC sufferers have frequency and urgency as their only symptoms, while others are plagued with a mix of other issues including severe pelvic pain, nocturia, leg pain, pain during sex and the feeling of "battery acid" in their bladder. The list can go on.

Although symptoms vary from person to person, one thing most IC patients have in common is a long road to diagnosis.  There is no one test to look for IC.  It's a rule out condition and many people will go through a laundry list of doctors before finding proper help.  Although women have been complaining of IC symptoms since the 1800s, it wasn't until the year 2000 that IC was taken seriously by the medical community. 

Many people still do not know that this painful and chronic condition exists.  Since we have yet to find what causes IC, ANY woman is at risk.  It is important to spread the word so that women know where to turn should they experience any symptoms of IC.  There are people completely debilitated by this condition.  IC patients deserve a voice.

If your bladder is on fire, speak up.  Another woman will be glad that you did.

Wednesday, January 12, 2011

To Every Person Who Has Ever Doubted Someone with Invisible Pain

Invisible pain patients look just like the rest of us.
It is easy to judge.  Everyone knows this, but people with invisible pain know it well. We are judged all the time.  Judged by "friends", co-workers or family members that say "but you don't look sick" or "you seem fine to me".  We are questioned by doctors who think we are "making it up" or that "it is all in our heads".  Judged by people who think we are exaggerating the pain.  Mocked by people who say, that it's not a big deal.  People who think that if they had our conditions that "they could still do this" or they "could still do that".  Judged by people who just don't get it.

To all the people out there that have ever judged or questioned a person with invisible pain, I have a few questions for you:

Have you ever felt like there was battery acid being poured over your bladder?

Have you ever experienced a feeling like someone was jabbing a sharp knife into your genitals?

Have you ever been to a doctor that made fun of you?

Have you ever been accused of making up an illness?

Have you ever not been able to sit because a part of your body feels like it is on fire?

If you don't suffer from invisible pain, you can probably answer "no" to all of these questions.  Lucky you. But some of these questions probably disturbed you a little.  Do people actually live with the feeling that their body is on fire?  Do people actually function with knife like pain shooting through their private parts?  The answer is yes. These people are all around you and they look just like you.  When you see them at a grocery store or a restaurant, they may even be smiling.  Smiling to fit in. Smiling to hide the pain. Smiling because they deserve to smile even though they have a chronic condition.  Just because they are smiling doesn't mean they do not suffer.  The next time you decide to mock someone with invisible pain, ask yourself, how would you feel if you looked perfectly healthy on the outside, but your insides were literally burning?  
Invisible pain patients are brave and if you know someone suffering from invisible pain there is one thing that you can do for them: believe them.  Trust me, we don't want you to experience the shooting and knife like pain that we do.  We wouldn't wish it on anyone in the world, not even for a moment.  We just want to be respected, we just want a voice.  We just want the people in our lives to say "I'm here for you and I believe you."

Never judge a book by it's cover.  The outside may look perfect while the inside is struggling to keep the pages turning. 

Friday, January 7, 2011

Chronic Pain Websites That You Should Check Out

If you are a chronic pain patient or a family member of someone suffering from chronic pain, it is important to be as educated as possible about chronic pain.  Understanding the conditions themselves and how to treat them is very important.  It is also vital to remember that pain doesn't make a person.  There are many emotional aspects to living with chronic pain.  Never forget that your family member or friend is still a person just like you with career aspirations, education goals, cravings for social interaction etc.  

If you are still familiarizing yourself with chronic pain or are a long-time sufferer just looking for some new places on the web to hang, here are a few websites that I recommend.  Enjoy! 

The Invisible Disabilities Association gives a voice to people who are suffering in silence.  It is important that the world understands that just because you can't see a scar, cast, rash or other outward signs that someone is suffering, doesn't mean that their pain isn't real.  The site promotes awareness through events, books and celebrity promotions. They also have links to great articles on how to deal with chronic pain issues in relation to your love life, work place, family life and more.

American Pain Foundation

Another recent find, this site supports chronic pain patients of all kinds.  I was happily surprised to see that the site even has its own Vulvodynia section.  Vulvodynia seems to rarely get any attention.  This foundation is on a nation wide crusade to help chronic pain patients.  Check it out today to see how you can get involved.  

The IC network is a great place to read and learn about chronic bladder and pelvic pain.  The website is filled with tons of information about symptoms, treatments, doctors and more.  One of the most helpful parts of the website is the large forum with lots of educated and compassionate women who can answer questions and give tips about bladder pain.  When you feel like there is no one out there that can understand your situation, the women on the IC network can be there for you.  There is also a great store that sells cushions, heat packs, acid free products and more.

It's difficult to explain pain that no one else can see.
When I came across this website, it brought happy tears to my eyes. I felt like I could relate personally to the posts written by the website's founder.  The creative mind behind this website is a lupus patient, but her wisdom and words can be inspirational to anyone with any type of chronic pain or illness.  My favorite part of the website is the "spoon theory" section.  Find out how one woman used spoons to explain her battle with chronic pain to a friend.  The spoonie movement has since taken off and has become popular on social networking websites. 

Tuesday, January 4, 2011

Random Things Pelvic Pain Patients are Thankful For

  • Heating pads...both with cords and portable
  • Ice packs, bags of frozen plastic balls, oh heck just ice in general
  • Loose pajama pants
  • Seat cushions
  • Yoga pants
  • The people who invented pain relievers and muscle relaxers
  • Almond butter
  • Acid free versions of regular food and drinks
  • Understanding doctors
  • Lidocaine
  • Furry pets 
  • And of course loving friends both in person and online

Sunday, January 2, 2011

Have You Ever Been Laughed Out of the ER?

Have you ever been laughed out of the ER??  The "average" person would probably answer "no" to this random question.  Unfortunately, for chronic pain patients with invisible disabilities this can become a common occurance.

I have personally been laughed out of the ER twice.  Yes, twice--- as if once wasn't bad enough.  Both times I was undiagnosed and was in 10+++ pelvic pain.  I had been up all night, no OTC painkillers would help.  I was laying on the floor screaming at the top of my lungs.  Yet, when I got to the ER I was made to feel like a fool by both doctors and nurses.  They did every test in the book on me including a pelvic ultrasound and found nothing.  The pelvic ultrasound was a nightmare, as they force you to drink a TON of water and won't allow you to use the bathroom until they are done with the procedure.  Even if you tell them how badly it hurts to hold your urine, they tend to have no sympathy.   

Basically, on both of these trips, when they could find nothing wrong with me they accused me for making it up.  Making it up for attention, making it up to get pain killers, making it up because I was a hypochondriac.  Now seriously, let's think about this.  If I was going to make something up, wouldn't I make up something a little less embarrassing than pelvic pain?  

Lucky for me, eventually I was diagnosed by a specialist of all specialists and I no longer need to deal with the ER.  The ER may be good for heart attacks and broken bones, but I will never go back to an ER for pelvic pain related issues again.

I hope to live to see the day where an undiagnosed young lady experiencing pelvic and bladder pain can find some help in the ER without being made fun of.  I know it's not the ER's job to discover rare conditions in people, but they should be open minded, aware and respectful of all patients.  Hopefully in time ER workers will become more educated about these issues so that at least they can give pelvic pain patients in a flare a few prescription pain killers and a referral to the proper type of doctor.

Anything other than being laughed at would be nice.  We all hope for a cure, but until then all people with invisible conditions deserve respect and dignity along the way.

So, have you ever been laughed out of the ER?  Share your stories.

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