When Your IC has to Come in Second

I haven't blogged in so long that I can barely believe it. The reason for my absence is that my husband has been in the hospital and he is very, very ill and I need to try to spend a lot of time there. I won't get into why exactly he is in there as this is the blog where I air MY health issues and I am not sure that he wants details of his issues shared with the world. Any prayers you can say for my husband are very much appreciated.

Any how, this situation has inspired this post. My IC comes in first a lot in my life. I don't want it to, but it does. How I am feeling can really control the pace of my day. I try not to let IC stop me from doing things all the time, but the illness may impact how quickly I can complete tasks or my mood. And unfortunately now and then there are times I do choose to sit out of an activity because of IC related pain.

When my husband was sent to the ICU, it was the first time since being diagnosed with IC that I really had to respond to a horrible, horrible crisis. No matter how sick I feel, I need to make it to the hospital to see my husband. I love him and I wouldn't want it any other way. Like most IC patients, some days I feel okay and other days I feel like absolute shit. But it doesn't matter, I do the best I can to help with my husband's situation at all times.

Fighting through the IC pain to do what I have to do is hard. There are long hours spent at the hospital. It is exhausting for anyone, but the IC pain makes it worse. I am under so much stress right now, another big IC flare trigger for me. There are so many times in the past where if I had certain symptoms I would take a nap or a break. I actually haven't had one nap since my husband got sick. I just keep on going like a broken version of the Energizer Bunny. 

It's hard b/c I feel like no one around me understands how sick I am sometimes. Family and friends know my deal, but many don't truly understand invisible pain b/c they have never experienced it. I like to ask many of the nurses in the hospital if they have ever heard of Interstitial Cystitis just to see what they say. I have asked six and only one knew about it. Sad, I know. 

I stay with all the other "healthy" visitors. I feel like a fraud among them. Some days I feel so fatigued and in pain I wish they could just set up a second hospital bed next to my husbands so I could be with him and tend to my own pain at the same time.

I love my husband and I want to be there for him, so I must go on. I need to be around to sign papers, make calls and be sure that he is getting the best care possible. I am not complaining, I would do ANYTHING to make my husband better. I am just venting b/c I never anticipated what it would be like to be in a situation where my IC had to come in second. I am used to having a routine and making accommodations because of IC. Right now that is not a possibility.

I am doing the best I can and I feel strong for doing so much and ignoring many of my own symptoms, but in the back of my mind I am scared. What if one day my body just gives out?? How far can I push myself to save my husband without jeopardizing my own health??

IC chicks are strong and I am no exception. I will keep doing the best I can to be there for my husband as he has been there for me many times before. IC takes the driver's seat in life many times because of the many horrible symptoms it causes, but I guess sometimes IC has to take the passenger seat.

Things to Say and Not Say to Your Friend with IC

IC is not only difficult on the IC patient, but it can also be difficult on family members and friends. The family members who live with the IC patient are usually the ones who get to see the IC patient at her worst (it's a little hard to hide flares from hell when someone resides in the same apartment or house as you).

Friends on the other hand usually see us at our best. This can make it a little difficult to understand the illness since it is invisible. It may puzzle a friend as to why we have an illness or complain of pain when we "look so good". Other people may see us looking fine one minute and crying in pain the next and become scared or not know what to do. 

IC is a very complex illness. I have tried many a time and in great detail to explain IC to a lot of people and still some of them just don't get it. I don't actually blame all of these people, it is hard to understand. Many doctors don't even get it so it is not fair to assume every person we encounter should.

If you are the friend of someone with IC it is possible to show compassion even if you are having trouble fully grasping the condition. 

Here are some things that you SHOULD and SHOULD NOT say to a friend who has IC.

Things you SHOULD NOT say to someone with IC:

"Gee, you seem to get sick a lot"- Us IC gals find this very annoying. We don't "get sick a lot" we have a chronic condition ALL OF THE TIME. Some days our condition is mild and some days we can have horrible flares, but the condition is always there. If you have a friend with arthritis or diabetes, that person has the condition always. Think of IC the same way.

"Get Well Soon"- While you probably have the best intentions when you say this, don't. Get well soon is the kind of thing you say to a person with a cold or sprain. You want the person with the cold or the sprain to feel better soon so they can go back to being healthy and so that they will be healed the next time you see them. IC patients can't go back to being healthy or be healed. IC is a chronic condition with no cure. It is part of our life everyday, not something we can get over soon.

"Oh, you're out at this party, you must be cured"- IC can be a very painful illness, but since it is not going anywhere, we do need to get out of the house sometimes. Many ICers are forced to be homebodies a lot, which can lead to depression. Some social interaction is good for us. We may even be in pain while we are out, but we need to do it now and again so we live a full life. We also want to be there for the important milestones of the people around us such as a family member's wedding or a friend's birthday party. Just because we are not in a bed connected to tubes doesn't mean a magical cure has come upon us.


"Can I use your cushion?"- You may see some ICers take cushions places from time to time. These cushions help us to sit with less pelvic and bladder pain. I have had people ask to borrow my cushion (or even worse, I had someone TAKE my cushion when I went to get a soda and they started using it as a neck pillow). Our cushions are not a toy, an airplane neck pillow or something to make your back more comfortable. Our cushions are assistive devices which allow us to sit in a restaurant, drive cars and more. Messing with an ICer's cushion is the exact same thing as touching a person's cane or wheelchair---it is very inappropriate and disrespectful.


Things you SHOULD say to someone with IC:


"You can go first"- If you are with a group of friends at a restaurant or a bar and there is a whole bunch of you waiting to use the restroom, the greatest gift you can give to your IC pal is to let her cut you and use the bathroom first. We get it, everyone in the line legitimately has to pee, but your friend with IC will get shooting pains if she can not use the restroom. Saying "you can go first" means a lot to your friend both emotionally and physically.

"I understand when you can't make it"- Sometimes we have IC flares so bad, that we have to miss out on things we really want to go to like a dinner party or a movie night. We feel TERRIBLE enough when we have to cancel. If you tell us that you understand that we can't make it and you mean it from the heart, it means the world to us.


"I'm here for you"- Having a chronic illness can cause a person to lose a lot of friends. Not everyone wants to be around the girl who can no longer dance on table tops or go a mile a minute. If someone tells us they are here for us, we really appreciate it. Doing simple things for your IC friend like talking on the phone or planning a fun activity which your IC friend will be comfortable doing such as playing video games in your pajamas can really put a smile on your friend's face.









 

Screaming "Monica"

As today is Halloween, you may hear many people screaming: screaming during a scary movie, screaming because a family member pulled a Halloween prank, screaming on a haunted hayride. Last week I heard a different type of scream, a much more bone chilling type. 

I started DMSO treatment last week for IC. If you don't know what this treatment is, to make a long story short a solution is put into your bladder directly with a catheter and then you have to lay on your side and rotate every few minutes. When you are done you go to the restroom and urinate out the solution. This is a six week treatment program, once a week, and I have only gone to one appointment so far, but I was excited to try it as I am hopeful it could help my symptoms.

This procedure was being done at my uro office, who I get along with, not to be confused with my V doctor who has me beyond frustrated. Since I was very nervous about getting the treatment my first time, I sat anxiously in my exam room waiting for the nurse. As I waited and played Angry Birds on my phone, it dawned on me that the receptionist told me that they only do this treatment one day a week and to try not to ever cancel an appointment b/c they need to fit a lot of people in. This means there were other real live IC patients just feet away from me in other rooms. I have never met another IC-er in person so the thought intrigud me.

As I continued to play my game, suddenly I heard screaming. It was coming from another exam room. 

"I CAN'T DO THIS ANYMORE!!!!!" a woman yelled, we will call her "Monica" for the sake of this post. "I AM SICK AND TIRED OF BEING IN PAIN ALL OF THE TIME. NO ONE LISTENS TO ME. NO ONE IS NICE TO ME. NO ONE HELPS ME." She also dropped several f-bombs and was making tons of noise and banging around.

A nurse started SCREAMING back at her. They fought for a while.


The nurse then paraded out in the hall and started screaming at other nurses: "I CAN'T TAKE MONICA ANYMORE. TELL DOCTOR SO AND SO I REFUSE TO HANDLE HER. SHE ALWAYS ACTS OUT OF CONTROL".


As I listened to this scenario play out, a few different things went through my mind:


1. Someone was getting in trouble at the doctor's office and it wasn't me. (I have had fights with many a doctor, but never at that level where the whole place could hear. This was no small office, this was a huge hospital.  I felt terrible for her, but I guess it made me glad to know I am not the only one who fights with doctors)


2. Did Monica have IC? Should I go talk to her? (I knew that I couldn't. I know that I would probably get in trouble for going near another patient's room and asking about her condition, but I wanted to so badly. I wanted to tell her that she wasn't alone. I wanted to tell her about the people who have treated me like crap over the years. I wanted to tell her not to give up.)

3. I hoped Monica's nurse wasn't the person who was going to be doing my procedure--luckily, she was not.  (I know this is selfish, but the nurse sounded very hostile and out of control and I was just petrified to have someone in that state of mind catheter me.)


The screaming continued, blood curdling screams. Monica was truly in pain. I wondered if someone was too rough performing an exam on her. I wondered if she was being denied pain pills. Eventually after a few more minutes of drama it got quiet, I think I heard someone get Monica's doctor. 


As I did the rotation part of my procedure, I had more time to think. It was just SO SAD that Monica had to go through that. We have so much available to us in this country and there are women screaming out loud in pain and still the medical community does not take IC seriously enough. I wish every doctor who has ever treated an IC patient badly could have heard Monica scream.


I guess Monica's scream was like the scream heard around the world for me. I am in a lot of online support groups and I read about other women's IC pain, but to hear another women screaming in a hospital the way I have screamed in my own home on my darkest day, it was like bringing it all to life.

As for the nurse, she said some horrid things to Monica. A part of me wishes the nurse could have IC just for one day (I would never wish it on anyone for real) so she could understand why Monica was so cranky. Many nurses and doctors don't have enough compassion b/c they can't feel our pain.


And Monica...I wish her well. I wish her more pain free days. I wish I could tell her that even though the hospital staff wasn't listening, I was.

ICan't Dance the Way That I Used to

I discovered something this past weekend at my bachelorette party: ICan't dance the way that I used to.

If we were to rewind to my college days, I could write a novel about those times called "Confessions of a Party Girl". I loved dancing. Before I was even legal to drink, I would get my hand stamped to go into the clubs and dance the night away. I would be on the dance floor from 9pm until 3am in stilettos three days a week.

Fast forward to the present, I am not even 30 years old yet and ICan't dance like I used to. Having IC just makes you exhausted. I had a really fun bachelorette party, but I did a lot, it was a busy day. There was traveling, dining out, gambling (all which I felt well during--yay me) and finally the dancing. 

After just a little while in the club, my bones hurt and I felt swollen. I started to feel exhausted and in a lot of pain. (I think I may also have Fibro in addition to IC but I have not gone for a diagnostic test yet b/c I am dreading having ANOTHER chronic ailment.) Anyway, my friends were awesome. When I couldn't dance anymore we went and hung out on the patio so I could have a chair. When we were done, we went back to our hotel room and laughed and pigged out on room service.

I know I am lucky to have friends who still love me even though ICan't dance the way that I used to, but it was slightly depressing for me anyway. It just shows how chronic pain can change life. Now that I am in my late 20s it is best I don't go out dancing all the time anyway, I know it is right to have other priorities, but I guess it would be nice to know the option is there. 

I felt slightly sorry for myself the next day as dancing to club music can be really fun, but then I thought about how lucky I am for the things that I can do and the important people in my life.

So maybe ICan't dance like I used to, but it's okay.

There are plenty of things I still CAN do:

ICan be an awesome friend, family member and fiance.

ICan still participate in lots of other fun things as long as I know my limitations and always do what is best for my body and my health.

ICan have a voice.

ICan get married.

And the list goes on...

And one of the most important things ICan do is spread the word about IC so that we can find a cure. Writing blog posts like this is a small start.

When Your Bladder Needs a Vacation

Don't spend half of your vacation searching for a restroom.

Suffering from IC can impact the life of patients in many ways. One major thing IC can interfere with is travel. Patients who need to use the restroom multiple times an hour may be nervous about taking long car rides or have anxiety about finding restrooms ( I am the queen of this, one of the first things I do in any new restaurant etc. is look for the bathrooms). Patients who suffer from pelvic pain may be concerned with laying on the beach  due to sand getting inside of a bathing suit. 

Remember that IC is stressful enough and that you deserve a vacation just as much as anyone else. You don't need to let IC control your travel plans forever. 

Here are a few tips to keep in mind if you have IC and are trying to plan take a trip:

-If you need to travel by car, study your route before you go. There are likely rest stops along the way. Knowing where they are can take away a lot of anxiety. Only travel with supportive loved ones who will be willing to stop as often as you need to.

-Make yourself comfortable in the car. Bring cushions, portable heating pads or anything else that will help you with the ride.

-If you are traveling by plane, you will need to get used to using plane bathrooms. No one likes to use tiny plane bathrooms, but us IC gals really have no other option. Getting an aisle seat can make things a little bit easier so that you can get up without having to climb over other passengers.

-When going to the beach, make sure to bring a chair. You will get way less sand in your bathing suit this way. Getting too much sand in a bathing suit can be a nightmare for a Vulvodynia sufferer.

-If you swim in the pool or ocean, get out of the wet bathing suit and put on something dry as soon as possible. Sitting around in a wet bathing suit can cause a yeast infection which can make a V or IC flare worse. Not chilling out in a wet swimsuit is a tip all women should follow, even those without IC.

-Make sure to pack all of your medications. Forgetting them may cause a flare or even just give you a lot of anxiety. When flying or taking a cruise, keep your medications in your purse or another bag you will carry with you. Do not put your meds in transported luggage that has the chance of being lost.

-Plan activities in advance that you know are IC or pelvic pain friendly. By doing this you will not feel left out if the group you are with wants to do an activity that you can't participate in.

-If you have a lot of food triggers, do research about restaurants in your vacation area to make sure there are foods that you can enjoy.

-Stress is a flare trigger for many patients. Pick a vacation that is on the slower paced side and not a vacation where you have to be constantly on the go.

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.

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. 

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! 

Invisible Disabilities Association 

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 Interstitial Cystitis Network

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.

ButYouDon'tLookSick.com 

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. 

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.