Saturday, July 14, 2012

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

Friday, June 22, 2012

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

Friday, June 8, 2012

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?    








 

Thursday, May 31, 2012

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.



Wednesday, May 23, 2012

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.





Tuesday, May 1, 2012

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. 

Thursday, April 19, 2012

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.

Sunday, April 8, 2012

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).

Wednesday, March 7, 2012

Great Products for the IC Gal

Hi all. My hubs is still sick, so my blog is not being maintained as much as usual, but I have not forgotten about the blog or my mission to spread IC awareness. I am actually in a huge flare today so I have lots of IC on the brain. The hubs has made some progress, but prayers are still appreciated as he has a road ahead.

So let's get down to IC business. Since my last post was very serious and depressing, I figured I would make this one a little more light. I wanted to talk about some awesome products that may be beneficial to you if you have IC or any sort of bladder/pelvic pain. All of these products I enjoy using from experience, I am not being paid by any of these companies or brands. 

A Cushion

If you suffer from pelvic pain, having a cushion is just as important as it is for a healthy person to have a pair of shoes, it's basically a necessity. There are two cushions that I use. I have the cushion advertised on the I.C. Network website. This cushion is ideal for me because it has a great shape which is beneficial to the perineum area and also helps with the bladder pressure that comes with sitting. A typical doughnut cushion that you see in a drug store does not work for me.  This is the cushion I drive on. I have trouble driving without it, it's my partner in crime.

The other "cushion" I own is the Total Pillow. Although this is technically a neck pillow, I find it convenient to sit on in restaurants. Since it has the hole in the middle I can just slide it on my arm to carry it in and kind of hide it behind my purse so that it is no big deal. I own it in the blue color instead of the brown color as I find it more fashionable that way. This product is only $19.99 making it budget friendly.

Panty Liners

Leaking is uncomfortable, gross, annoying and unfortunately a part of IC for many people, myself included. I am not sure why I am admitting to this so publicly. I think I have been realizing lately this is one of the aspects of IC that a lot of people suffer from but a lot of people are embarrassed to talk about. 

Now if you talk to your doctor about leaking urine, he or she may suggest adult diapers or another whacky idea. That is real easy for the doctor to say because he or she is not the one who has to deal with it. I don't know about you, but at 28 wearing adult diapers does not sound like a fun idea to me. 

Now some of you may be able to wear typical store bought panty liners sold near period pads. This is the most affordable and practical way to deal with leaking if you can handle wearing this type of panty liner. Unfortunately for me, my Vulvodynia is so severe I can not, the pain and irritation is just too much. So after a lot of failed ideas an IC friend of mine found me the perfect product:GladRags. These panty liners are made of soft cotton, so your Vulvodynia will not be a problem. They are rather costly (the only drawback) but they are reusable and washable, just put them in the washing machine as you would with your panties. The liners come in awesome colors and designs such as zebra and peace signs. Goodbye granny products, hello fashion and comfort.


Ice and Heat 


Due to the nature of our pain, us IC gals sometimes need to apply ice and heat to places others would never dream of. Many ice packs are hard and inconveniently shaped. I have owned a paradice pack for 2 years now and it is my favorite thing ever. These reusable packs are soft and mold-able because they have fluid balls inside. Use this brand of ice pack to apply the cold to the exact part of the body that is hurting you no matter how small or oddly shaped that part of the body may be. You can get a pretty good sized pack for around $20.


Have you ever had stomach pain, bladder pain or pelvic floor spasms so bad that you just don't want to leave the house? On those days you must go out due to obligations, don't leave home without a BodiHeat disposable pack. These packs can stick to the inside of your clothes or the outside of your panties. There is no need to warm up these packs. Just crinkle the pack a little, stick it on and you are ready to go. Get through meetings, events and parties without being in tons of pain due to the heat this product provides. These little items have saved me more times than I can remember. 




Let's face it, having IC sucks. But having some extra special products can help us to lead more comfortable and active lives. Happy shopping. Wishing everyone a flare free week. 

 

Friday, February 10, 2012

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.

Friday, January 20, 2012

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!!".

Wednesday, January 11, 2012

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   ; )

Sunday, January 1, 2012

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.









 

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