Whisper Words of Wisdom Let it Be

A chronicle of my life, including the ups and the downs dealing with chronic pain and making it through graduate school. It is a way of bringing awareness to chronic pelvic pain disorders, two of which I have: Interstitial Cystitis and Pelvic Floor Dysfunction. Many women and some men suffer from these disorders, but they are not well known. This is a blog about my journey with these disorders, and about life in general. We only have one chance, so we better make the best of it.

Saturday, December 10, 2011

Can't Stop Won't Stop

This past week or so has been pure hell for me. Dealing with the lowest of lows and feeling that it is impossible to come up for air. Depression is not the easiest thing to deal with, especially when you do not want to even admit to it. Depression has not always been my biggest problem as much as anxiety. I worry way too much, but many people tell me that I have a reason to be stressed and worried right now. I always like to have a back-up plan, and like to have things planned out perfectly. After dealing with all of issues relating to my health, I realized I don't know how things are going to be from day to day. Some days I cannot concentrate, cannot breathe, cannot handle anything and everything around me. There is a yearning to turn back time and go back to when things were simpler. Turn back the clock and re-do it all. Change what needs to be changed, and see how my future would turn out. Of course, none of us have the power to go back and change parts of our lives. Moments in our lives are there for a purpose; to teach us what we have done wrong and give us a chance to grow from our shortcomings.

Right now I feel like I am having that moment to change some aspects of myself, and hopefully grow as a person. This past week was something that I dread going through, and felt completely worthless because of missing work. I realized that the reason of missing work was understandable. The pain was excruciating and my mind was not completely there due to hormonal changes. The pain made me scream for days, lose sleep, cry. Then I cried because I lost faith in myself, and felt that there was no reason to keep going on. Luckily my boyfriend was there for every rough moment, and kept my head above water. My family was there, along with friends.

Monday is a new day, a new start. Already planning a project, and my head is much more clear than it was before. I have until the second week of March to show who I am. I keep thinking about what would happen if I fail, or don't make it past that point. How about I ponder about what would happen if I do make it past that point? Reverse psychiatry my friends...

Thursday, October 6, 2011

This Time Tomorrow

Tomorrow is the day I meet with my advisory meeting concerning my 'condition.'  Over the past seven days, I have gone through many emotions. I planned on writing what I would say, and came to a road block. What do I say? How do i say it? How much is enough? I honestly don't think speaking from a piece of paper is important right now. I realized that speaking from the heart will lead me in the right direction. There is no way to 'correctly' express what I have gone through, and there never will. Either they will understand it, or they won't.

How do you express to someone that you are feeling better? How do you express that you will not let anyone down? Most importantly, how do you express that you are a strong person? Everyone may have their opinions, but only I know the answers.  My stomach has been in knots pondering about the situation. The only things I can convey are my passion, along with giving people an education about what I have gone through. Who wouldn't cry about all of this? I know there may come a time in which I cry during this meeting, but it will not be out of weakness. It will be because now I am forced to think about all I have gone through, and realize I came out of it with my head held high. I fought each and every doctor who told me that there was nothing wrong, or that they could not come up with anymore treatments for me. Fighting me is never a good idea, mostly because I fight back.

I have and will continue walking around this long and winding road. IC doesn't define me. It never has and never will. I want everyone to know who I am and where I have been.

I remember when I was diagnosed two years ago. I also can never forget when I walked into my advisor's office and told him that it was probably "just some chronic bladder condition." He looked at me , fearful, since it had the word chronic in it. It didn't mean a thing to me, and didn't phase me. I finally had a name, and that is what truly mattered during that moment.

Now I completely understand what the word chronic means, and it scares me. Hopefully I will be able to completely manage it, and I am working on that. This past treatment was a bit rough, but I have been working my way through the pain and discomfort.

I will probably write more, but it will come at a later date.

Thursday, June 23, 2011

Thoughts through fog

I feel as though I have been seeing things through a medicated fog lately. Too many things for me to even comprehend, but I know that I will be at a point where I can try. Maybe I am at that point right now? Who knows...

I am ready to start anew, to go back into school and finish what I have started. I know that day will be coming sooner rather than later. I have been thinking about how things will be when I go back. Obviously, things will be odd, but I try not to worry about any of these things right now. That is just how things are where I work (at least one of the places).

I have more important things that I have and will worry about. I wonder if my health will go to a more positive state, or if things will falter as they always do. I should not be so pessimistic, but in some ways I cannot help but feel this way. This past year has been terrible, and one that I would not like to keep reliving. I understand that we can only grow from pain, hardship, and everything that comes with these things. I have had enough pain, thank you very much. I realize I have just had major surgery, so there is some pain that goes with that. At least with that pain there is an ending. I am trying to draw perspective from all of this, but I feel like I keep coming up short.

I feel like I have gained a lot of perspective just in these last few months. Something I did not believe would ever happen. I never thought I would have the opportunity to put myself in front of everything I found to be important. Not many are given this opportunity, but I do know of people who always put themselves in front of everything. That is another thought within itself, but not for right now. I have actually found this to be a summer of 'self discovery.' I have had more things running through my mind then I can even count. At times it is overwhelming. I thought that going through grad school was overwhelming, but at this point I think discovering things about yourself to be a bit more daunting task. I keep thinking that I write and think about the same things day in and day out. Feel as though I am on an endless loop.

I hope that things will soon shift to something more productive and less of a mental strain. It is so odd that one thing in your life can change a person so drastically. For some it is a job, love, new found faith, school, or illness. One thing. I understand that you should not let that ONE THING define you. I will not. It is a combination of things that should define us. Right now, I am going through that one moment, that one thing that is changing me. No one said it is for the worse, and I know that inevitably it is for the better.

Maybe these are all a string of empty thoughts, or questions that may not be answered right away. Maybe I should try to just LET IT BE.  Just let things follow through, and let it go by and try to keep note of things throughout the process. It is hard to let things pass you by, even if it is something monumentally important.

I will get through all of this, and hopefully gain the perspective that I seek.

Wednesday, June 1, 2011

Tonight's the Night the World Begins Again

A journey, a lifelong journey. No one ever said life was easy, and if they did they never actually experienced love, pain, heartache, music, and the inevitable ups and downs that ensue. Most would think that those people have it easy, but they really have not. It is important to experience life, because that enables you to grow stronger as a person. Each road we take may not be the same or have the same experiences, but that is what allows us to connect with a person. 

I have been going through an 'ultimate journey,' so to speak. Everyday I wondered why I had to suffer through so much pain, and not get any relief. So many times I have wanted to give up, and just let all of the bad things take over me. Everyone battles something in their life. Not many realize that some of our own demons are hidden inside, even when all looks normal on the outside. One may be going through depression, anxiety, MS, cancer, Interstitial Cystitis, Pelvic Floor Dysfunction, back pain, migraines, and any other disorder that can be severely debilitating. 

I remember when I was first diagnosed with IC almost 2 years ago. I knew that I would have to make some dietary changes, but I never realized it was CHRONIC. Chronic is a terrible word. Since my IC has been on a downward spiral, I now understand what CHRONIC means. How do you face that you may have to deal with pain your whole life?? I never know when a huge flare will hit and leave me out for weeks at a time. I have never wanted to admit that I have depression and anxiety issues, but I do. As a result of dealing with my IC and other conditions, I realize that it is hard to accept the changes. I feel at times that I am losing a part of myself. 

Pain can obscure thoughts and lead you to a different place. Some days I feel so clouded by the racing thoughts that run through my mind. Each day I try to take it one thought at a time. Too many can really bring me down. There are days that I realize I need to take time out to do something to de-stress myself, or even bring me to a point of acceptance. It is going to be a long road, but there is nothing that can be done immediately. Learning is a big part of my life, whether from books or my own experiences. Learning can only bring me closer to acceptance, and also a stronger person. I have had to hear and face things that someone my age should never have to hear throughout this process. I also believe that I have been given up on by my current urologist; hopefully the new one will not give up on me. A doctor should not ever give up on someone. Never. I am nervous about meeting the new urologist, but hope should not escape through my mind, body, and spirit. No one should never feel that all hope is lost on them in that respect. 

Luckily the pain management doctor understands me and we are working towards a goal: MANAGE THE PAIN. Something my current urologist has not even tried. 

I am afraid of the future and worry for so many reasons. I know that there are so many things out of my control, but it is hard for me to let go of that control and let life happen. My parents have and always will be there for me, along with my boyfriend and his family. SUPPORT is a big part of getting through a CHRONIC ILLNESS. Not many realize that, but I believe it can make or break your spirit as a whole. 

There are days that I know I am making improvements. I know that things will not always be how they once were, but I am taking a different route these days. 

Thursday, May 26, 2011


I wish that I had better control with what is going on with my body. It feels as though a war has been waged on my entire right side. I take my medication and do everything possible, but it will not let up. I wonder how I can go from feeling amazing one week and then fall apart the next week.  Severe chronic pain is not something I would wish upon anyone.

Pain is especially hard to deal with when you do not know its origin. I wish I knew what I was battling right now so that I could rid my body of it. This invader needs to retreat and leave ASAP. I can deal with the bladder problems, but this other pain is getting out of control.

Some days I wonder how I deal with everything that hits me. I feel as though I am hit constantly with something new and invasive.

Maybe soon it will go away?

...I hope so.

Sunday, March 20, 2011

RIP Tarzan 3/20/11

You were a great hamster, full of happiness and mischief. A fur-ball, a partner in crime, and loved having your cheek pouches stuffed as shown in this picture. I always knew your favorites, because you always spit the ones you disliked at me. You loved to play climb, and make sure that your cage was PERFECT. I always loved watching you put it together, and tear it apart (even if I could not figure it out). You were a buddy, that loved to play in your ball, but discovered playing in the apartment was best. I am happy you had your last hurrah on 3/18/11 playing in the apartment. I held you in my hand while you were dying, and I believe that you were just waiting for me to say goodbye. I know you were holding on for me, and I tried to tell you let go, but you were too strong too. I love you and miss you, and am happy that you are buried under some soon to be flowers. I know you would be happy with it.

Tuesday, March 15, 2011

It's not where your coming from, it's where you're going to

I feel as though I keep venting the same things over and over. Dealing with this pain has made me frustrated in so many different ways. One day I feel as though I have a grasp on things, and the next day I lose control. Who knows how long I will lose that control?? This loss of control is really upsetting me. Every person/patient believes they should follow doctors orders, they may have a rhyme or reason, correct? We all need to be able to scrutinize what is going on with our bodies, and doctors orders because they may not be for the best.

Obviously this new medication added to my instill is not doing the job. After 3 days I knew that, but it was being pushed onto me. Why add an anti-biotic to someone who is not prone to UTI's or bladder infections, and has probably NEVER had an infection? Luckily the nurse at the doctor's office told me to call tomorrow, since the doctor would be in, and I am going to be so freaking straight forward. I have been doing every freaking thing they tell me to, but it is NOT WORKING. I never thought I would end up at a pain specialist because of being a chronic pain patient, but it may happen. I have been doing so much research on things to bring up, but I don't want to have to wait for a week to voice my mind. That is why I am going to try and do this ASAP tomorrow morning. I am at the end of my rope. I feel hopeless, and defeated at times. I know that I will not let this control me, but it is easier said than done.

I wish I could just turn the clock back and things would change. I would go back to a pain-free happy person. I can barely sit up because of the pain/pressure in my bladder. I just want to hear a call about something that will work, something I would believe in. I have been having situations where I cry constantly because of this. I just wish the pain would go away so I could go back to being myself and work.

I have so many things on my mind: what to say to the doctors (and how to say it), where I am going in my grad school (sometimes I worry if this will just keep pushing me back), if my urologist is doing all of the right things for me, and how to keep this pain from coming back.

I am so frustrated. I feel like each day I am losing hope, faith, and myself along this journey. I am trying to be strong, but it is not easy when you feel as though you cannot leave your place because of sudden pain attacks that leave you on the ground screaming. I feel alone, and scared as though it is never going to go away. I want to succeed with my life, research, everything.

I just want to know where I am going to end up in the scheme of things.

Friday, March 11, 2011

Pain, pain, go away. Don't come again another day.

This has really been a rough week for me. On Monday I was dealing with terrible bladder spasms, that led until Tuesday, which led me to an emergency visit to the doctors office. They wanted to make sure that there was not an infection, which luckily there was not. So obviously it is just a bad flare. The pain and pressure has been excruciating the past few days. I was so down because I could not go to DC for a few days, but realize I would not have much fun feeling the way I have been. Plus to make matters worse, I came down with the stomach flu yesterday, which finally settled down. Must have been some sort of 24 hour bug.

My urologist is adding a new medication to my bladder instillation, it is a type of antibiotic that will act to ward off infections and hopefully help with other symptoms. I have had my pain medication dose increased, and have had to take it around every 4 hours. I try to go longer, but cannot seem to make it. Sitting in a car has been terrible. The doctors tell me to rest, but it is SO hard for me to do so. I usually run a few errands, and then come home and relax. Sometimes I try to clean up in the apartment and do things. Usually the only thing that helps me to feel better is to lay down perfectly still, but that is not the easiest thing to do daily.

I am frustrated because I was feeling so good, and then BAM, I get hit with another unforeseen flare. It is just hard keeping up with all of my medications. I just can't believe I am on so much. I wish I never had to go through this condition, and school. I am happy to have people who care and support me through this. I am sick of this...I just want something to keep this pain under control.

Thursday, March 3, 2011

'Eventually We Find Our Way'

I don't understand why I am having an anxiety attack right now, but I have a feeling I know why. In all honesty, I am not stressed about work or school. I am actually happy with work, and things are finally moving on.

I feel I need to be more innovative with my research, but have such a lack of confidence that I will be able to come up with the ideas to make it happen. In the normal part of my brain, I realize this is not true. I have made it this far in my career, and have proven to myself and others that I am a smart person. I want to take my research in different areas and develop new compounds that could be cancer therapeutics, and I know I will do it.

I am stressed about my trip next week, not because of the flight or anything like that. I am stressed because I am going to have one bag completely dedicated to 'health related items.' I am almost 25 years old, and I have to worry about going through security for all of my items related to my bladder instills. I feel embarrassed going to buy catheters and broke down in tears at the pharmacy tonight. I have to do my instills while on my trip, along with watching my diet so that my time away is not spent in an enormous amount of pain. I'm scared. I don't want this to stop me from traveling or anything like that, and I know it won't. It is just a lot more to think about than I have before. I dislike this disorder and feeling fine for a while, and then just have those 'pity party days.' I have so much going for me and I do not want it to be ruined by this disorder. I am just fearful of having a pain attack while out, or the fact that I have to sit down a lot. I just wish there was that magic pill to take it all away. Maybe this is why I want to go into drug discovery so badly. I want to develop therapeutics for people who are suffering, doesn't matter if it is cancer, arthritis, interstitial cystitis, as long as it could help someone suffering from a chronic disorder. No one can see this disorder by looking at you, but there are days where it just eats you up from the inside because you are so scared to leave because of the pain. People tell me I am a strong person and I will get through it-I know I will, but when will I learn to accept it? It really is a back and forth process. Some days I feel alone in this, but I know it is not true. I have Michael, my family, and my close friends who have been there through every step of the way.

I know that this process of acceptance is not an easy process. I just hope I eventually find my way to my destination.

Sunday, February 20, 2011

Family, Faith, and Friends

This line actually comes from something I saw at a store in Broad Ripple yesterday, and made me think.

I have realized that throughout my life I have isolated myself. I have had so many people do me wrong, and I have learned that those are not the people who I should associate myself with. I may look at my friends and realize that I do not have a lot, but at least I know who my true friends are. I only have a very select few who I deem to be true friends. I don't care if that is only a handful of people, but those people are the most important in my life. In short times you can really get an idea for who your friends really are. The people that have been there for me through the tough times, are the ones I will always count on, and that is what is important.

I finally believe that I am getting better. Since the lab accident last Saturday, and the sinus infection throughout the week, I know that I am getting better. My bladder has been behaving, and that has been a true blessing. I realize now that I have to take all of the medications in order to maintain a level of homeostasis within my own body. I have always been down about being on so many medications, doing bladder instillations, and the need to organize my meds at 24 years old. Now I realize it is a part of my life, and now I will just grow from the experience. Sometimes it just sucks having interstitial cystitis, but in some ways it has been a blessing. I have given up soda (used to drink WAY too much), drink more water, new awareness of my own body, working on my diet more (sucks not having italian-tomato based dishes that I used to love), decreasing the amount of caffeine I have (either ONLY decaf or half-caff. in frapps.). So should I look at this as a negative? No, I should look at it has a positive. I just need to maintain that outlook and I will do just fine, and maybe remission will be something sooner rather than later. I have my own individualized pain/therapeutic regimen for this disorder. It has taken time to get there, but I have learned so much along the way.

On a new note, I have been with my boyfriend Michael for 5 years. Wow, I cannot believe how time has flown by. We have stood by each other through thick and thin. We have lived with each other for quite some time and have not killed one another yet. I support him, and he supports me. I could not ask for a better person to go through all that I have gone through with. I love him and his family for treating me with such respect, and well, as part of the family. I can honestly say I have been with someone I truly love and respect. I know that I spoil him, but I realize that he does so much to help me out. I cannot wait to spend more time with him. I realize that I am so close with his sister, and look at her as my own sister. She means the world to me. I don't care if I spoil her, she takes care of me (even at 14 years old). She makes sure that I am keeping track of medications, treatments, everything. It just means the world to me. I had a great weekend with her last weekend, and enjoyed talking about memories we have shared together (even when we first met). I love talking to her, and watching her grow. She is going to be something amazing (artist or pianist or piano teacher-the world is her oyster). I have been close with his parents, and his brother also. His parents have taken me in so many times, even through the tough ones (bedbugs-AHHHH), and it has always been without hesitation. I truly love them.

My dad is having a birthday this week. It sucks that I cannot hangout with him and my mom. They are the greatest parents ever. I realize as I have gotten older, I am trying to spoil them with nice gifts. I just want to give back for all they have done for me. They have helped me through school and led me to become the person I am today. If it were not for that, I don't know where I would be. They have taught me the importance of being on my own, and I know realize how much they have done for me. They are hardworking people and I look up to them. I know my dad works a job he dislikes, but he has been there and he does it for my mom and also for me. He always has. My mom also works hard. I guess I get my hardworking attitude from them (and my crazy work attitude from my grandfather), and that is not a bad thing to say. I really look up them, and do not know what I would do without them. I am actually almost tearing up writing this. It just feels like there are so many powerful emotions that run through my mind when it comes to my family and my friends. I realize now that I cannot lose faith in those people, because they are all I have.

Thursday, February 10, 2011

May Angels Lead You In, Hear you me My friend

So far it has been a full work week. I honestly don't know how long it has been since experiencing this much bliss. I have had some pains, but they are manageable, and that is the key.

The song that I am referring to is "Hear you Me" by Jimmy Eat World. It is a song that makes me realize that I could not be who I am without the really important people in my life. Each moment, each struggle, has made me grow into the person that I want to become. I may be unsure of my day or what is going to happen along the way, but I am always aware of my true friends, and the people who will be there for me no matter what happens along the way.

Each day is something that we should appreciate, and take to heart. All of us have issues or faults: work, health, coworkers, finding jobs, but we should not let those issues define us. I don't want my health to define me, I want all of the struggles (graduate school included), the people I meet, and everyday encounters to be what defines me. I want to be defined as a strong woman. A person, that someone could look up to and realize that you can do whatever you want no matter your limitations.

I hope that each event in my life will make me a better person, and the best that I can be. No matter how tough the struggle is, I realize that I will prevail. I will rise above, even as I have reached my lowest.

Some of this may seem like it is rambling, but it is what goes through my mind. Especially as of late.

Tuesday, February 8, 2011

Keep The Faith

Someone wrote this on the ICNetwork forum today, and it brought on some emotion. It is something that my grandfather always said, and has remained a staple for our family.

Through all that I have endured since last July, I know it was an uphill battle, but I have remained as strong as possible. People tell me I am a strong person, and I believe it is because of the events that have occurred in my life. Throughout my time in graduate school I have learned a lot about myself. I started out as this person with absolutely no confidence, and after many peer discussions, I started to grow. I want to remain a strong and independent woman in the science field, and hopefully achieve so many things after I get my Ph.D.

Being diagnosed with interstitial cystitis has led me through some tough times, but with any disorder there may be problems that need to be overcome. I am hoping that I am on the correct track to being better. Having some pain free days has been amazing, something I have not felt for a while.  It is no fun doing all of the treatments, taking the medications, but at least I can say that I am doing everything in my willpower to work through it.

I guess I should 'Keep the Faith' more often.