IC-ers: Damned if We Do, Damned if We Don't

Hey all...

My latest post is up at our new home: Check it out. It's about how sometimes with IC, we just can't win. The new site is not finished yet, so pardon the appearance. xoxo Val

We're Moving!!

We're moving!! Not me, but this blog. Pretty With Pelvic Pain will soon be moving from Blogger to the Wordpress.org format. I am doing this move because I really hope to improve this blog as well as expand on it. 

The move to Wordpress will allow for a more professional look, easier access to IC and Vulvodynia videos and articles that I create for places beyond this blog, sub sections where I will write blog posts about other topics including anxiety, depression and more. 

I am really excited for this move and redesign, but it may take a while to be totally complete. I want to make a new post soon because I am jonesing to write one, so I may write from the new platform and then put a link to it here even if the new site is not completely finished. The new location will be more of a website and blog combo. It will still have actual blog posts but then there will also be other pages available. All the posts from the original blog have already been transferred to the new platform, but I will also leave this blog up, I will not delete it, this way you can access older posts either way that you'd like.

I will be posting links here with the official link to the new site and links to new blog posts etc. in the beginning.

Below you can enjoy my first video in my IC video series. You have likely already seen it if you are my Facebook or Twitter friend, but in case you access this blog through another manner you may have missed it so here it is again:

 Videos 2, 3 and 4 can be seen on YouTube and will also be posted on the new site.

Once the new site/blog is decent looking, I will also create a Facebook fan page for it, making it easier for readers and pelvic pain sufferers to connect. There was some confusion earlier in the week. Someone started a FB fan page using my logo and the name of this blog. THAT WAS NOT ME and my branding has been taken down since. This blog does not currently have a Fan page and when it does I will be sure to blog about it.

Thanks for showing interest in my redesign and expansion. I wish you all a happy and pain free (or low pain if you can't be pain free) weekend.


XOXO

We May Look Like You, But...

One of the main struggles of the IC gal is the "I don't look sick" factor. There are many illnesses and conditions out there considered invisible disabilities. Some are more recognized than others and sadly, IC remains one of the least recognized even though around 3 million American women suffer from it.

Us ICers often feel in a league of our own because we hurt more days than not and people tend to think we are exaggerating. It's not like we walk down the street shouting "I'm in pain" but when we need to tell someone we are in pain such as a new doctor, a friend who asks why we seem down, an employer who won't let us go home early or an extended family member who approaches us at a party we are sometimes not met with an understanding response. 

Would you be able to tell which friend has IC?

I have been reading some data lately compiled by the ICA, well-known doctors and other legitimate organizations. This data really backs up our pain level and validates how harshly IC can impact our lives. I am not going to make a works cited list or anything because this is my casual blog and not your college term paper, but rest assured these things you are about to read are all  true and not just some junk I pulled out of my ass. 

If you have IC, please consider showing this list to your family and friends. If you don't have IC, but know someone who does, stop judging them by their appearance and take this list into consideration instead. 

Characteristics of Many IC Patients

I have IC, I may look just like you, but... I'm depressed. I'm depressed because the pain I feel is so intense it impacts the activities I can and can't do.


I have IC, I may look just like you, but... I have just as low a qualify of life as a dialysis patient.  


I have IC, I may look just like you, but... I'm tired. I'm just as tired as someone who has MS or Lupus but for some reason you probably take people with those illnesses more seriously.

I have IC, I may look just like you, but... I can't stop peeing. I need to pee one to three times per hour if not more. If I don't go when I need to, I am in intense pain.

I have IC, I may look just like you, but... My joints hurts. My joints can feel just as achy as someone with rheumatoid arthritis. The only difference is people have actually heard of RA.

I have IC, I may look just like you, but...  I have trouble sitting, yes, sitting. When I sit too long in any typical chair my bladder, vagina and perineum hurt a lot. It feels like someone is stabbing me with a razor blade or a knife. I am much more comfortable sitting on a couch or better yet laying down.


I have IC, I may look just like you, but... I get brain fog and confusion because I am on so many medications. I can't stop taking these medications or I would be in even more pain.


I have IC, I may look just like you, but... I struggle with my weight. When I have too much pelvic pain, it can be hard to work out. The medicines I take may also cause me to lose weight or gain weight at an abnormal pace.


I have IC, I may look just like you, but... I had to give up wearing jeans most of the time because the material hurts my pelvis and bladder.


I have IC, I may look just like you, but... I don't sleep well at night. I am either getting up to pee or am uncomfortable because of the pain.

I have IC, I may look just like you, but...  I spend too much time and money on doctor visits. 

I have IC, I may look just like you, but... I have had to change jobs, cut back my hours or stop working completely because my crippling symptoms come and go as they please, they don't fit into the standard 9 to 5 mold.

I have IC, I may look just like you, but... My social life is nothing like it used to be. I have to cancel on plans when I am not feeling well. Some people have stopped inviting me places period.

These are just some of the many challenges IC patients may face. This illness is debilitating and devastating. Will you start to notice? Will start to care? Will you start to show more compassion? Or will you just keep ignoring it because your friend with IC looks just like you?    








 

Everything Else is Just Bullshit

Usually all the posts in this blog are relevant only to those with IC or another chronic health issue, but I feel like this post is something many other people can relate to as well. This thing call life, it is filled with tons of surprises, not all of them good. Sometimes there is only so much a person can take.

Each day you rise and face whatever your daily routine may be. Your routine no matter if it be ideal or simply just bearable becomes the norm, you adjust. But then there comes a time when life throws a wrench in the road. Maybe one wrench isn't enough. Maybe two, three or four wrenches get thrown at you all at once. 

Crisis and hardship can be devastating for anyone, but I think when you already suffer from chronic pain, it makes it even harder. Sometimes it can feel like you are climbing up hill with a ball and chain locked around your ankle just to survive the new route your life has decided to take without your permission.  

There are lots of messed up people and things in this world. Sometimes it can feel like it is your job to fix everyone and everything---it isn't. Unfortunately, many people with the best of intentions wind up in the worst of places. Even at your most selfless moments you can find yourself preaching to a choir that just won't listen.


Some people in this world are destructive. Instead of getting help for their own issues (and we ALL have issues of some kind) they drag people down in order to make themselves feel better. Remember that you are not a punching bag. 

There is only so much burden you can carry as one person. There are only so many mountains you can conquer, there are only so many people that you can make smile. After a while it is too much for just one person to deal with. You deserve help carrying life's load. If you realize this too late the consequences can be devastating.  


It is important to know when to step back and say "ENOUGH". Life is meant to be lived, not to break you down limb by limb.


If you feel that your life is spiraling out of control, stop, take a deep breathe and re-evaluate. 


Always remember to put your health first. If you don't put your health first, you will come in last. If you already have IC or any other medical condition mental or physical you can make your conditions worse by taking on too much. If you are perfectly healthy, you want to stay that way. Excessive stress can put you on the sad path to sickness.


After you have your health in check, focus on your loved ones: your significant other, your parents, your children, your siblings, your TRUE friends etc. You need good people in life to laugh with during the good times and hold your hand during the bad. You can do the same for them. 


And what about everything else in life? Sometimes there comes a point when everything else is just bullshit.

Sick? Not Sick? The IC Cycle of Hell

Some medical conditions come on and then are cured for good. Other medical conditions may make someone incapacitated every single day. IC falls into a group of conditions where you can have good days and bad days. There is no one steady IC cycle. IC is an unpredictable beast. Although many patients do have SOME IC symptoms every single day, most patients go through flares and that is when they feel the sickest.


When a patient is not flaring the person may be pain free or just experiencing minor symptoms or low level pain. During times like this it can be easy for a person to complete normal tasks: working, shopping, socializing etc. When a flare strikes however that same person may find herself living in the bathroom or the bedroom. Flares can make urination frequency out of control and put bladder and pelvic pain at a 12 on a scale of 1 to 10. It can be really hard for an IC patient to know just when a flare will happen. While some people know what their triggers are (certain foods, stress etc.) there is no solid way to avoid or predict a flare. Many times it can seem like a flare comes on for no reason.

How long does a flare last? Unfortunately, there is no way to tell. Flares sometimes last hours and other times last days. Some people are in so much pain and agony during a flare that they can barely walk from the living room to the bathroom, let alone do anything else.

This is the most confusing part of IC for many family members and friends of an IC patient. It can be REALLY hard for a person to understand how his or her loved one seemed perky on Monday and by Wednesday is in so much pain that the IC-er is considering going to the ER. 

It is important to remember that even when an IC-er is not flaring and seems happy it doesn't necessarily mean the person is completely comfortable. Some people can get their pain at a zero and frequency under control when they are not flaring and other patients can not. Some IC-ers have to develop a new normal. If a person can never get his or her pain below a 3, then that person adapts and finds ways to complete activities when his or her pain is at a 3. But everyone has a limit. When pain starts to creep up to a higher level, typically 8 or above for many, there is just no way for normal activities to be completed.


IC is still such a mysterious illness. No one hates the mystery more than us IC patients. Before IC I was a planner. Everything always had to be planned way in advance and executed just right or I couldn't take it. IC has taken that away from me. I still try to plan things, but sometimes they don't always work out as planned due to the IC cycle of hell. I never know when a flare will hit so hard that I simply can't get out of bed.


If you have a friend with IC please show compassion. I know it can be frustrating if he or she bails on something at the last minute, but your friend can not help it.

I realize it can be hard to accept that your loved one is sick especially since he or she likely looks fine from the outside. The most important thing to remember is that IC-ers are still people, people with feelings and we just want acceptance and understanding until the medical world catches up with us and finds a cure. So if we are sick one day and fine the next we are not faking, we are stuck in the IC cycle of hell.

What It Feels Like to Have Interstitial Cystitis

This post is not pretty. This post is not sugar coated. This post is scary, this post is raw, this post is real. That's what IC is, it's scary, raw and real. That's also what life is at times. 

So what does it feel like to have IC? 

It hurts, it hurts like effin hell. Imagine someone taking a tub of battery acid and throwing it over your bladder when you least expect it, that's how it feels. When you have IC there can be so much pressure weighing on your bladder that it feels you are going to throw up and now and then, you do.

IC can feel like someone is taking a knife or a hot poker and stabbing you in your genitals over and over and over again. Some other days it may feel like a million pins are stabbing your genitals. Don't forget about the electric shock type nerve pain that can come with IC. Sometimes you may jump out of your chair or make a noise as that painful, electric pulse sears through your genitals, pernieum, spine and bladder.

Sometimes IC can make you feel like your pee or your genitals are truly on fire. There are very few ways to put out this fire. Medicines, creams, gels etc. Sometimes they work, sometimes they don't. IC can make it hard to sit for a long period of time because sitting causes pressure on the pelvic and bladder region making symptoms worsen.

If you have IC sometimes you will get the overwhelming urge that you have to pee maybe one, two or three times an hour (or more for some). You will stop whatever you are doing and RUN to the bathroom. If you ignore this urge b/c there is no bathroom available you will be in intense pain. Once you get to the bathroom you sit there miserable. Even though your body is saying that you MUST go, sometimes retention gets in the way and it can take ten minutes for the urine to come out. Finally, you have relief (maybe a lot of urine came out, maybe only a few drops) but not for long as you may be doing this same activity again in an hour if not sooner.

This illness can make you itch and have spasms in places you never imagined. These spasms can make it hard to walk from one room to another. Concentrating as your bladder spasms can be near impossible at times.

IC an make you fatigued all the time. Living in pain is hard. Living in pain can make getting up or taking a shower a challenge. Chronic pain wears the body down. You may see many people with IC doing normal things: shopping, working, driving, dining out. It doesn't mean they don't hurt. When an illness has no cure, you do what you have to do and smile to mask the pain. 


Having IC can lead to depression and anxiety. IC can cause you to need more time to rest and it can prevent you from being able to participate in certain activities. Friends and family may not understand. The lack of understanding can make you feel isolated leading to more depression and anxiety, it's a vicious cycle. Also, not knowing where bathrooms are when you leave the house can be a big trigger of IC anxiety.

These are the main symptoms, there can be many others. This disease is ugly. This illness is a monster. This illness wants to dominate and win, but you must refuse to let it win.

This post was not pretty. This post was not sugar coated. If you didn't like it b/c you thought it was too blunt, too honest or too gross then maybe you can't handle life. Not all parts of life are rainbows and sunshine. 

IC hurts. IC is depressing. IC is not pretty, but IC is real. 

I'm So Sorry...Not.

This is a note to all the haters in the world. All the mean, self-centered people who think bad things can never happen to them. All the uneducated, self-absorbed losers who always think their situations are the worst and have ZERO compassion to what anyone else goes through.

I'm sorry. I am sorry I don't live up to your high standards. I am sorry that I am tired almost all of the time. I am sorry that my version of life doesn't meet your definition of what life should be.

Do you think I really like taking medications all of the time? Do you think I like giving up money that could be spent on fun things to buy these medications? Do you think I like having to cancel on friends b/c I have a really bad flare? Well, I don't. I actually hate it, but I accept it. I accept it because I have no choice. IC has no cure, so I need to find a way to face reality and live with it. 

Just because you see me smiling, laughing or enjoying something doesn't mean that you should suddenly expect me to run the Boston Marathon or be able to work 90 hours a week. My body has limits and I know these limits. I shouldn't have to explain myself to you or anyone else. I am allowed to have "moments", everybody is. I have moments when I laugh at a joke or enjoy a movie or have fun at lunch with a friend. No one can be miserable all the time. When you see me enjoy something it doesn't mean that I am cured. You don't see me when ten minutes or ten hours later I am crying in pain. IC is a mysterious disease which not even doctors can fully comprehend so don't treat yourself like an expert just because you have met me or another IC patient once. 

Life with IC is a painful life. We know how to put smiles on our faces when we have to. We do the tasks we need to take care of family, friends and children so just because you see us doing something doesn't mean that we are not in horrible pain while we are doing it. If you are going to judge an IC patient maybe you should look in the mirror and judge yourself first. Your life is not perfect.

So please, keep your opinions about me and how I should live to yourself. I can assure you that me and every other IC patient out there are doing the best we can to put one foot in front of the other day after day. Some of us can work full-time, some of us can't. Some of us can eat certain foods, some of us can't. Some of us can exercise, some of us can't---the list goes on. But no matter what we are strong and we never stop trying to be the best person we can be for ourselves, our families and our friends.

I am sorry I don't fit into your perfect world. Oh, wait, I'm not.