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?    








 

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.

What Doesn't Kill You Makes You Stronger (?)

They say what doesn't kill you makes you stronger. I guess in some ways that saying is correct. As I have mentioned in a previous post my husband has been very ill and was even in a coma at one point. I went through hell with hospital visits, fighting with doctors, doing paper work, praying for my husband, crying, remembering to paying bills on time, being told that my husband might not make it etc. I am proud to say that now my husband is HOME. He still has a road ahead. We have at home nurses, PT and OT visiting regularly, but he is alive and will eventually make a full recovery. 


Dealing with that situation and now being a home caregiver has made me stronger in some ways. It made me realize that I am a brave woman who can survive almost anything. I found courage I never knew I had. I fought with all my might for the man I love and never gave up. It was hard, but it didn't kill me and it made me stronger in the sense that I now  know I am a brave, intelligent person with unimaginable dedication. 


However, since I suffer from IC it did not make me stronger in a physical sense. My body is weak. The hospital staff cared very little about my health situation b/c I was not their patient. I got close with some nurses that did care, but many doctors and some other people couldn't have cared less if I died on the floor of the hospital room b/c it was not their responsibility to look after me. As the stress got worse and my husband's situation went on my frequency got worse. My retention became awful and we won't even go into the  horror of the spike in pain levels. I also suffer from generalized anxiety disorder and as you can guess that showed it's ugly head many times during the situation.

 I ignored my body's desire for rest and did what I had to do to save my husband. When I went to see my pain management doctor a few weeks ago he looked me up an down. There I stood pale as a ghost with bags under my eyes and shaking hands. He had seen me a month and a half before when I had actually made a few positive improvements. He knew about my husband and the situation and was very compassionate originally about what was going on.


"What have they done to you?" he uttered. He was shocked by how bad I was doing. Usually my pain from IC is invisible but I had visible signs that my health was not good. 


I told him about the hours I was spending at the hospital, about how I had not taken a day off in over 50 days and about a few other horrific situations that had occurred that I needed to attend to. He was really upset. I am his patient and he wants to see me doing the best I can with a chronic illness, not walking in looking like someone who has never been treated before. He told me that I needed to start being somewhat selfish in my choices. He said that if I didn't I wouldn't be able to take care of myself or my husband. It was hard but I finally did end up taking two days off. Yes, two days out of over 60. One day I attempted to rest and the other was not a real day off b/c I spent it scrubbing the house for my husband's homecoming.


Now here I sit in the present. Having my husband home is obviously wonderful b/c I missed him so much. I do need to still do a lot for him (he can't drive), he does limited walking etc. but in between tasks I do get to rest a little. Only now I am realizing the true damage I have done to my body. I feel so sick from IC almost every single day. My muscles are weak. I am constantly exhausted both mentally and physically and also have symptoms flaring that resemble Fibromyalgia or Chronic Fatigue Syndrome. Right before my husband got sick my Uro told me I should see a Rheumatologist b/c some of my symptoms were beyond the scope of IC and he was concerned I may have some other illnesses too. I have not had time yet to have my appointment. 


I love my husband and if I had to do it again I would have done it all the same. He needed me 100% to fight for him and I didn't care what hurdles were in the way. Many people believe some of the actions I took saved his life. I am so happy he is home safe with me where he belongs. Nonetheless, I am scared right now about my health and my IC symptoms. He is scared too and wants to see me improve. Hopefully my husband and I can work together and both of our health issues will improve.


They say what doesn't kill you makes you stronger, but when you have IC, sometimes what doesn't kill you makes you weaker (physically speaking at least).

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.

You're Fired!

Donald Trump isn't the only one who is allowed to say "you're fired". Never be afraid to fire a doctor that truly isn't helping you or that isn't treating you with respect. Finally after three years of bouncing around to different places, I think I have my ideal medical team in place for a while: a uro, a regular gyn with Vulvodynia knowledge, a pain management doctor and a physical therapist who specializes in the pelvic floor. I would not have this team if I didn't work up the courage to fire my vaginal specialist and replace that specialist with my new gyn.

The vaginal specialist that I fired was actually part of the initial duo at a hospital that diagnosed my V. I already knew I had V from extensive research, but the bone head gyn I had at the time didn't believe me and didn't want to deal with me so she let me suffer for 3 months while I waited for an appointment with this advanced vaginal specialist. Even when you correctly self-diagnose yourself, you need a doctor to write out scripts for the treatments.

You're fired!!

The first time I went to this vaginal specialist, I was just so grateful that someone agreed that I had Vulvodynia that I wanted to kiss the sky. I was new to the world of under discussed women's health conditions. I didn't have the wealth of knowledge I do know. The NP I saw prescribed me a low grade antidepressant with nerve pain blocking qualities, it helped lower the pain at first which is always a miracle when you have been suffering for 3 months in 10 pain alone and laughed at by ER staff. Her bedside manner was not very good, but I didn't think much of it.

Eventually, my health got worse as I was diagnosed by a urologist with IC which causes my pelvic pain to be worse. I also could not tolerate some of the side effects of this very old school medicine she had me on. She was very nasty to me when I wanted to switch medications. She gave me a new antidepressant with nerve pain blocking qualities but was not happy about it. She thought her original prescription was the be all and end all of meds (even though the psych community no longer uses it b/c it is such a sucky medication). 

As time went on this woman got meaner and meaner to me. She made fun of every well researched suggestion I had for my treatment. She also would lie to me about the existence of medications and treatments that I knew were real b/c I am very active in the IC and V community and I have friends who take them. One day, I had to reschedule my appointment and the receptionist told me there was an opening with the doctor instead of the NP. I thought I hit the lotto. I could be free of this mean woman. The doctor prescribed me something that helped for a while, but since V as well as IC can both be diseases of progression I eventually needed additional help. 


I am a very educated patient at this time. I read up frequently on treatments new and old. I am in support groups and forums and I of course write this blog. I know of maybe 15 possible treatments for V. This closed minded doctor only offers FOUR. If those four don't work for you it's like too bad, too sad. When I went in there crying in pain one day, the doctor prescribed me a compounded cream even though a similar cream did not work in the past. I reluctantly ordered it even though it was $50. Well, I should have listened to my gut instinct b/c the cream lit my girl zone on fire. It impacted my V and IC symptoms for 2 days and I was very, very sick.


I called the office to complain. Even though I was a patient of the doctor, the NP called me back. She showed no sympathy, did not apologize and even tried to blame me since the cream "works on other patients" (umm...no two V patients are the same you fool). I asked her if I could just take the oral version of the active ingredient in the cream that was supposed to help my nerve pain (it was non-narcotic and did not have an interaction with any of my other meds). She yelled at me and accused me of being on too many medications. A few other harsh convos were had between me, the NP, the receptionist and more. I don't want to get into it but I was treated terribly.  


That's when I decided I was DONE. I deserved to be treated better. There was a non-narcotic medication I knew could give me some relief and she denied me. Animals are treated better than this. I saw my kind uro a couple of weeks later and he was happy to prescribe me the medication. He thought it was a great idea. Two weeks later I found a new gyn someone recommended to me. She is kind and open minded and wants to help me and work closely with my other doctors.


Cancelling my last appointment with the mean practice was awesome. I called and told them I needed to cancel. The receptionist asked when I wanted to reschedule and I said "NEVER".


You deserve proper medical care. Don't let someone leave you in pain or make fun of you. I stayed in the wrong place way too long b/c I was nervous to branch out. Know your body, research treatments. If there are treatments you want to try and they are non-narcotic and the doctor flat out makes fun of you, get a second opinion. Some doctors can't prescribe narcotic treatments or other certain controversial treatments, but a good doctor would  refer you to pain management to discuss those treatments with a doctor who is allowed to order those treatments. If a doctor won't send you to pain management and you are in pain, it is also time to get a new doctor. It took me a while to learn this as well. 


You are a person. These illnesses are very personal and you deserve a kind doctor who will treat you with respect. You also deserve treatments that can help you to live your life as comfortably as possible based on your personal symptoms and diagnosis. IC, V and related conditions have no cure. The medical community can not leave us hanging forever. They need to help us.


If a doctor treats you like crap, never be afraid to say "You're fired!!".

Yes, Sometimes We are Bitchy

Yes, sometimes we IC gals are a little bitchy, snippy and short-tempered. We are not snippy because we are mean people, we are snippy because chronic pain makes us this way. Chronic pain can lead a person to have a very short circuit. IC is a terrible condition and sometimes the pain can be unimaginable.

During high school and college, I used to be told that I "smile too much". I was always a very friendly person. I could light up a room and make other people happy.

Today, I am still a friendly and nice person. I am caring and generous and still have friends. But one thing is different, I am in chronic pain. 

Sometimes we IC gals may be giggly and nice, but a lot of times we may be struggling to put one foot in front of the other. Our bitchiness is probably experienced most by those closest to us. The more time someone spends with you,  the more likely they are to see you snap. It's easy to put on a smile and run into the drug store and attempt to be care free in front of the cashier. But it's a whole different story to always keep it together at home 24/7 when chronic pain is present, so our families suffer the most.

The biggest problem for me personally is that sometimes I am trying with all my might to do a task in 10 pain and then if someone nags me or picks a fight with me that is it, I verbally snap. I am short-tempered and snarky b/c I just can't handle anything else at that moment. I know I wouldn't be snarky in that situation on a day I wasn't in pain. 


So why are IC chicks sometimes bitchy?? Well imagine this...


Imagine you were minding your business and suddenly it felt like someone was pouring battery acid on your bladder.


Imagine you were working on your computer or watching TV and suddenly a level 10 pain shot through your vagina.


Imagine you were in the mall and suddenly your vuvla felt on fire to the point where you wanted to cry.


Imagine you were cleaning your house and suddenly you fall to the floor in tears b/c a shooting pain is radiating through your thigh.


Imagine you are trying to type up something and you can't finish it b/c you have to pee every 20 minutes.


These are the things us IC gals deal with almost  ALL of the time. Could you live like this ALL of the time? Maybe we deserve to be a little bitchy now and then. We have to be strong everyday and try to live productive lives despite the pain. Eventually, anyone would break down from the constant pain.


If you have a friend or family member with IC you need to be a little more compassionate if she seems bitchy or snippy or short-tempered now and then. She likely does not mean to be mean to you, she is probably in great pain and is having trouble coping. 


Now we do have to take some responsibility for our own behavior. Sometimes if I am having a really bad pain day I realize after a flare is over that maybe I said something bitchy to my husband or another family member and I do apologize and the person does understand. I  reassure them it was truly the pain talking and not me.


So before you can judge a girl with IC for being too snippy, you'd have to spend a day in her shoes. Remember those shoes come with a lot of bathrooms breaks, a lot of burning pain and a lot of stabbing pain.


IC sucks. It has taken a lot away from us. So maybe sometimes we are a little bitchy, but I think we deserve to be   ; )

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.









 

Someone is FINALLY Listening to Me

I am not sure if it is a Christmas miracle or just persistence paying off, but I am finally being heard. Doctors are finally beginning to listen to me. I have been through such hell over the last few years with a variety of doctors. I have had to leave certain doctor offices because they accused me of making up my symptoms (before diagnosis). I have abandoned other doctor offices due to verbally abusive treatment or because the staff was just not educated enough to treat my symptoms even with a diagnosis.

One main problem I have had for a while is that no doctor ever really wanted me to try MY ideas. So a week or so ago I went to the urologist discouraged as ever. I even brought my mom for emotional support. My current urologist is one of my nicer and more knowledgeable doctors, but I have only been there a few months. I was scared he was going to be angry with me for stopping my bladder instillation treatments. I was supposed to do six treatments, but after four, I realized the the debilitating pain and flu like symptoms they were causing were just not worth it. The treatment was ruining my life more than the condition. So I stood up for my own body and stopped going.

The doctor came in and to my surprise he was not mad at all. He began going over a laundry list of possible next steps with me, none of which I was too eager to try. That's when I just blurted it out "I have a lot of shooting nerve pain and I really want to try such and such medication". "Okay," he said as he took out his prescription pad. I was in happy shock. I have done a lot of research on this medication and it really seems like it could help my symptoms. It is a very common medication, not addictive or a narcotic, so one would think there would be no problem getting a prescription for it. Just a few weeks earlier I requested the same medication (from one of my other doctors) and the verbally abusive, witch like nurse practitioner told me that I am not allowed to take oral medications and she will only prescribe me creams. (Hmmm...that makes a lot of sense, especially since every cream she has ever prescribed me has made me sick). So this is the mentality I am used to dealing with, so I was just so happy I was finally getting to try a treatment I feel is right for MY body. 

My mom went on to ask the uro a few questions about IC. When he got to a certain part about food and IC, he said "your daughter can probably tell you better than I can, since she is the one who deals with it everyday". I smiled again. I AM THE ONE WHO DEALS IT EVERYDAY. Why do more doctors not realize this??


I am not just some fool. I write this blog. I have spent hours researching all sorts of causes of pelvic and bladder pain. I spend a lot of time reading and posting in multiple support groups. I have written published articles about pelvic and bladder issues. I may not be qualified to do surgery, but I sure as hell am qualified to talk about IC and give my opinion on treatments and medications. It makes me feel satisfied that finally a doctor sees that I am an educated patient.

As if that day couldn't get any better, I had been struggling for months to get into another specialist for pain connected to the same hospital as my uro with no success. He said to have the girl in the front of the office put a call in. She made a call and I got an appointment just a few days later!! This doctor and his senior med student spent an hour and a half with me going over every pelvic or bladder issue I have ever had from 16 until now. They came up with a second medication for me to try.

It has only been a few days since I have started these two, new treatments so I am clearly not pain free, but today I was doing a lot better than I have done in a couple of months. My pain was lower. I think my nerves are finally being calmed. I don't expected to be cured and I don't need to be cured to be happy. I just want to get to a level where I have more good days than bad. I want to be in the driver's seat of my life. My vagina and bladder can sit in the passenger seat (or maybe even the trunk for that matter). When my pain gets below a certain level I am so much happier and productive. I can be a better person.

I will keep you all updated, but right now I think I am on the path to something positive in this whole whacky world of IC treatment. Never stop fighting. Just a few weeks ago I was ready to give up hope completely because my symptoms were out of control and mismanaged and now I have not one, but two doctors being nice to me and am on a treatment plan I am happy with. 


Will this new treatment be my magic combo?? It's too soon to tell, but it feels great to have hope and it feels even better to be listened to by doctors. I live and breathe to fight for IC and Vulvodynia awareness some days. My opinion counts and so does yours. Every patient's does. It is your body, find a doctor who will work with you.


Well that's all for now, but in case I don't post again before the holiday weekend I want to wish everyone a very Merry Christmas and a very Happy Hanukkah. Thank you for all your love and support. I hope you enjoy a fun (and hopefully pain free) time with family and friends.

Pain Free Christmas: I.C. Spoof of "White Christmas"

I thought after my last ever so serious post, I should do something a little goofy and festive. Here are the lyrics to "Pain Free Christmas" an I.C. spoof of the song "White Christmas". Enjoy!

I'm dreaming of a pain free Christmas,
Just like the ones I used to know
When my I.C. was missin’ and doctors still listened
And my bladder didn’t dictate where I could go

I'm dreaming of a pain free Christmas,
Just like when my bladder wasn’t the star of the show
Where I spent less time pissin’ and my pain was missin’
and I never ever had to have my sitting pillow in tow

I'm dreaming of a pain free Christmas
with every prescription my doctor writes
May your days be comfortable and filled with glee
and may all your Christmases be pain free

I'm dreaming of a pain free Christmas
where I don’t have to take a heating pad everywhere I go
May you feel well enough to go on a shopping spree
and may all your Christmases be pain free

I'm dreaming of a pain free Christmas
with every hospital co-pay check I write
May your bladder stay calm so you can just be
and may all your Christmases be pain free

May people show you compassion and hospitality
and may all your Christmases be pain free

And may all your Christmases be pain free

Am I Living Life? Or Just Something Like It?

Lately the painful parts of this condition are taking a toll on me. I try my best to be the IC optimist, but the past month or so it has been really hard. I don't know if it is the change in seasons or my failed DMSO instills, but my pain is high, high, high. 

It's to the point where I am never comfortable. A good day means the pain is low. It is rarely ever gone. Sometimes I may get a random hour of freedom, but then it is back. But most of the time it stays around a 5 minimum lately. Then in the evenings most times, all hell breaks loose and the 9 and 10 sharp pains attack. It is like living hell.

Being in a constant state of discomfort or pain is not easy. It really, really wears on you both mentally and physically. I keep going on because I have responsibilities, but lately I don't feel like I am actually living, I feel like I am putting on a facade that looks like a life.

By this, I mean that I am going through the motions: I still write, I still grocery shop, I still go to restaurants, I still do laundry, I still try to socialize some etc. But to be honest, there is only so much that I can enjoy. No matter what I am doing no matter if it be the most boring thing on earth or the most fun thing on earth the pain is always impacting my body. There is part of me that can not wait for things to be over while I am doing them. The pain is just so distracting that sometimes all I wanna do is run to my couch wearing loose pajama pants and curl in a ball with a heating pad. Even if I am shopping in a mall (one of my all time favorite past times as a Jersey girl) I can't wait until I have purchased the last item I came for so I can go home and attempt to find some form of relief. 

Before IC, I was the kind of person who pushed the hardest at everything. I did too much, committed to too much, ran around too much, but it was okay...a part of me really liked it. Now I do things and I feel like it is just getting by. I feel like I am never as happy as the people around me.

If I am in a restaurant or a bar with shiny happy people, I just feel like one giant facade. IC is such an invisible condition, that I feel like an undercover agent. I have the same smile on my face as all the other girls. I have the same over priced handbag and new boots as many of the women in the crowd. Friends and strangers ask me where I get my nails done or how my day was. They think I am one of them, not knowing as they are smiling for real, I am smiling to hide the pain---the shooting and throbbing and burning. All I want is to sleep because it hurts so badly.

I can totally see why someone with IC would never want to get out of bed. I keep getting up everyday and I will continue. I continue for my husband and my family and my friends. I continue because I know I have a lot to offer to the world and I want to contribute something to society everyday. I continue because there are certain things I need to do to be able to survive in the world. But when push comes to shove, the deep rooted in joy in so much is gone.

Each day I am going through the motions. But as long as the pain is this draining, am I really living life? Or just something like it?

All I Want for Christmas is a Dr. Who Doesn't Give Up on Me

All most little kids want for Christmas is their two front teeth. All I want for Christmas is a doctor who doesn't give up on me. I had to stop doing DMSO installations. I was scheduled to do 6 and had to stop after 4, I was not finding much relief. I decided it is my body and it was not worth the extreme pain and hours of my life I was losing each week recovering from the installation that was not really helping. I feel like it helped in a VERY VERY minor way with nighttime frequency, but it was making sharp, pelvic pain worse, which has always been my worst symptom. I am not sure if it was the DMSO itself or if being catheterized each week was just too invasive for me, but it was not pleasant, it was rather hell-ish actually.

About two weeks into December I have my next appointment with the Uro (a NP does the installations). I am a little nervous he will yell at me for stopping or be angry that the installations were not helping. I have had such bad experiences with doctors in the past who have given up on me b/c their one or two ideas didn't work. They didn't throw me out of the practice or anything, but I ended up leaving b/c I was getting no help with my pain and they were treating me poorly.

One thing I will say about this doctor is that he was SOMEWHAT more open minded than the past ones. When I told him about my failed journey with Elavil, he didn't make me go back on it even though it is his favorite IC med. I just really want him to suggest something else now that I have decided DMSO is not my cup of tea, something that works.

I feel sometimes like I am screaming and no one hears me. A doctor maybe able to help one or two of my symptoms, but no one seems to deal with this one painful symptom that bothers me the most. I have come to terms with my IC in the fact that I know there is no cure right now and I am okay with that, I am just looking for some more support and compassion from a doctor along my journey. I want someone who is my cheerleader so to speak. Does such a doctor exist??

It would also not hurt to find a proper pain management specialist as part of my Christmas wish. I greatly lack proper pain management care and it is really difficult some days. It seems really wrong to me to tell patients that there is no cure for a medical condition, but then refuse to provide proper pain relief. I am definitely asking Santa for good pain management specialists for all my IC sisters and me. 

The Christmas season is a special time and I am grateful for my family, my friends and all that I have, but I can't help but have that one wish for that magical doctor. I don't expect anyone to cure me, I just expect someone to say "I understand and let's help you live the most comfortable and normal life possible despite this horrid condition".

So Santa...if you have some time after dropping off puppies, kittens and hippopotamuses to all the kids out there, if you could give me a map to the most awesome IC doctor on earth, Id' be forever grateful. 
 

Always Be Thankful for Your Health (and cute pajamas)

When I was a little kid, old ladies used to tell me to be thankful for my health. Well, I found out sooner in life than I wanted to that those beloved little old ladies were right. Healthy people often take health for granted. I mean it is easy to. Sometimes when you feel good it is easy just to work, play, travel and live and not think about what would happen if you ever got sick. Part of it may be that no one wants to think about getting sick because it is depressing. If you are reading this and you are totally healthy, take a moment to be thankful.

Now, IC has definitely made me realize that health is something to be thankful for. I never imagined only a few years ago that I would be 27 and fighting with doctors and having a weaker bladder than Betty White. I never imagined that I would find myself curled up with a heating pads on nights when I would rather be out with friends. But nonetheless, here I am. IC is real. Thousands of painful conditions are real. Even though IC can't kill you, it can certainly make life miserable at times.

Yes, these are my real pajamas, aren't they cute?

Despite the fact that I have IC however, I am still very thankful for many things that make having IC just a little bit easier. It is easy to get wrapped up in being negative (which I admit on some painful days I do) but there needs to be a time to stop and look at the positive. Little blessings are hidden everywhere and as bad as you may think your life can be at times there is always someone out there some place going through something worse.

I may have IC, but I am thankful that I also have:

-Health insurance to lower the cost of my doctor appointments and medications

-A car to get me to and from said appointments

-A husband, family and friends who stick by me

-Ice packs, heating pads, cushions and other tools to help me when I am in pain

-Lots of cute pajamas to wear on days when I am too sick to go out (hey, just because I am in pain, doesn't mean I can't still look adorable hehe)

So well I do like to bitch and moan sometimes about plenty of IC related things (pain management issues, insomnia etc.) and plenty of non-IC related things (student loans, rude people, the high cost of living) today I will be thankful for the things that I do have.

I may not have a perfect life (who does?) or a totally pain free life, but I do have a lucky life with plenty of blessings.

And even though I have IC and it is clearly no fun, I am still thankful for the parts of my health that I do have. Some people can't walk, can't see, have trouble breathing etc. and I am very blessed that I don't suffer from any of those issues. 

So this Thanksgiving season take the time to be thankful for things: big things like your health and even the little things like cute pajamas.

I wish all of my readers and your families a happy and blessed Thanksgiving filled with lots of turkey and minimal pain flares for you IC gals.

I'll Never Apologize

I'll never apologize for writing this blog. I think this blog may freak some people out who don't suffer from chronic pain, but ya know what? I have decided that I do not care. It is important for this message to get out there.

First of all, no one ever apologizes to me, at least not anyone from the medical community. The doctors who didn't believe me 3 years ago never apologized for being wrong. The doctors who don't treat my pain correctly never apologize for the nights I have spent crying. The evil nurse practitioner who gave me the cream that made me flare certainly didn't apologize.

As for the non-medical, regular people who this blog freaks out, one part of me understands. I mean, before IC, did I ever think it was possible to have an entire blog devoted to a bladder? Of course not. But now as someone who suffers from a medical condition that so few people know or care about I feel totally different.

So yes, my blog is about a bladder. If someone has a problem with it, I say: GET OVER IT.

Yes, in this blog I say words like bladder and vagina. These are body parts. Body parts can be injured, inflamed or infected. It is a simple part of life and any mature person should be able to discuss it. If someone is grossed out about reading about vaginas and bladders, maybe that person isn't mature enough to be having sex, watching porn or looking at dirty magazines. It's almost like a double standard in life. When someone brings up a vagina in a sexual way, it's okay, it's not taboo. When you want to talk about a legitimate medical condition, people try to make you feel ashamed. Well, I am not ashamed, not me, not anymore.

When I think about it, I have always been kind of weird. I am like a freak wrapped in a Tiffany's box. I say this because on the outside I look totally normal: I really like hip clothes, getting my nails done and wearing makeup. When it comes to my interests however, I am anything but normal. I watch really strange indie flicks that many people find morbid. I like old music, ghosts and writing odd stories. I have always had an interest in dating men that many people consider too old for me. I have obsessions with 1950s movie stars, Jack Skellington and anything dinosaur related. I have had all of these quirks long before IC. 

So maybe I have always been kind of weird. Maybe this blog is a little weird. But maybe some of us are born to go against the grain. If everyone marched to the same, totally proper beat there would never be inventions, discoveries, new movies, cures etc. 

There is not a lot of control in your life when you have a chronic condition where the symptoms like to come and go at random.  Educating people about the condition and helping other women who feel like they are suffering alone gives me purpose and hope. If 100 people visited this blog and I was able to help just one woman with IC feel like she is not alone, then I am happy. I don't care if the other 99 people are making fun of me for having a blog about a bladder.

So this is my blog. Yes, it is a blog about a bladder. If you don't like it, just don't read it. I have no plans to stop writing it and I will surely never apologize for it.

From V.I.P. to V.I.P.

I am 27, nearing in on 28 years old. If you asked me what V.I.P. meant when I was 21, I would have told you it stood for very important person. If you ask me what V.I.P. means now, just 7 years later, I will tell you it means vulvodynia, IC, pelvic floor dysfunction.

Growing up I always had friends, but I would say I was somewhat introverted at times. I enjoyed my alone time. I like to stay up late writing screenplays, chatting on Compuserve or AOL or watching Lifetime. I am the kind of person who has always been able to find ways to entertain myself even when I was alone. I enjoyed hanging out with friends and doing typical young people things like going to the mall or calling boys and hanging up...but even if just once a week I liked to be totally alone.

Fast forward to college and everything changed. Life was on the go. I got a taste of the traditional version of V.I.P. (very important person). I became very outgoing and from about 18 to 22 my friends and I used to go to nightclubs every Thursday, Friday and Saturday night. We lived for it. We loved the music, we loved cocktails, we loved being social, we loved guys. 

We were kind of like the younger, Jersey version of the show Cheers. We went to all the same places all of the time. Everyone knew our names, we never waited on line, we got lots of free drinks, we partied with DJs, we made out with hot strangers and the list goes on. We were straight A college students by day and party girls by night. When I look back at it, we had no real responsibilities. Now knowing what real hardship is, it is nice to think about it sometimes.

I remember I had this "rule". I didn't like to sit in clubs. I loved my high heel shoes and always liked to be on the go. Sometimes I would go out at 9 pm and not come home until 4 am and I would stand or dance the entire time. Now this thought is laughable. Chronic pain is so hard on the body. I don't go to bars much anymore, but when I do, I always wanna know the sitting situation. I still like fabulous shoes, but I like to wear them in a chair. 

Being in college for me and being this V.I.P. nightclub goer was surreal. I was living in a fake world. Nothing seemed to matter besides my friends, house music, new clothes and parties. It was in no way reality, but it was fun.

I lived a "normal" transition into adulthood after that...working full-time for the first time, making a decent salary and still going out on Friday and Saturday nights whenever I felt like it. Then right before my 25th birthday the life changing pain hit for the first time.

Sometimes, I will admit I get slightly envious of some people I meet who didn't get hit with IC and such until 35, 45, 55 and beyond. I wonder, why me? Why so young? What would I be doing differently if I was given an extra 10 or 20 years without IC? Then I realize, it is not easy at any age no matter if it be 18 or 60. IC sucks. 

IC has made me change really fast. It has made me realize that health is the absolute most important thing in life for yourself and your loved ones. IC has made me love a one on one meal with my mom, or my husband or my best friend more than I could ever love any night out partying.

IC has really brought me back to some of my isolating ways. Sometimes it is hard to be in pain and be with all the shiny, happy people. I spend more time writing, watching movies and doing other things that were a bigger part of me during childhood, but that I put on the back burner in my early 20s. I do still like to socialize, but I don't do it nearly as much as I used to. I usually try to do something social at least once a week b/c I love my family and friends and don't want to be a complete hermit. But gone are the days of going out three nights in a row. I would collapse from pain and exhaustion if I did that.

I really enjoy gatherings in people's homes now more. They feel safe. There is always access to comfy seating and a bathroom. The nightclub world is no place for a person in chronic pain. I do get thankful for the times that I do get to go dancing or do something of that nature, even if those times are more few and far between. It has become a treat.

I actually don't mind my hermit ways so much as long as I am choosing them. I really do love to write and create things and watch movies.  But now and then there may be something I am invited to and I can't make it to because of the pain. Those are the times I resent IC. Going out all night or staying home and being a hermit are both okay, as long as they are my own choices. I don't like when I have to let IC choose for me, but sometimes I have to if my IC gets out of control. 

So here I am, a woman of almost 28. I have known what it is like to be a very important person...and now I know what it is like to be a person with vulvodynia, IC and PFD. Now that V.I.P. means vulvodynia, IC and PFD to me, it doesn't mean my life is over, it just means it is different. I am finding new ways everyday to educate, to love, to make changes and to do better. Sometimes I stumble, sometimes I succeed, sometimes I cry and sometimes I love my life.