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.

Tuesday, January 17, 2012


Writing has always been therapeutic for me, but it is hard to keep up with it at times. A few weeks ago, I thought about where I am in my life right now. If you would have told me me that I would have to learn to deal with debilitating pain every day, I don't know if I would have believed you. No one knows what changes are going to occur in our lives or where we may be heading. Some of us are already set in our careers, and married with children. Each on of us heads along a path, and think that it is a straight line, but we are usually just kidding ourselves.

I have learned to be stronger dealing with Interstitial Cystitis, PFD, fibromyalgia, but I can't be strong all of the time. There are moments of weakness that you cannot push away. There are many days where I feel so paralyzed with pain, that I am afraid to leave the apartment. I am afraid that I will be so overwhelmed with pain that I won't be able to get home. I am afraid of failing. I am afraid that I won't make it past this next committee meeting in March, and will be trying to figure out where to turn at the next light. I am afraid of the unknown. I am afraid that each day I feel like I am losing myself to disorders that have overtaken my body. I feel like I am drowning. How do you bring about strength when every day is a battle? A lot of days I am trying to be strong on the outside, but on the inside I am screaming.

I am a fighter, and always have been. My semester has changed, and I am teaching this semester. I am actually looking forward to it. I guess I just want to feel 'normal.' I need a sense of normalcy in my life right now. As long as this normalcy keeps up, then I believe that I will continue on the path that I am currently on. Luckily the hydrodistention done on my bladder did help, and has given me some relief. I just don't like the fact that I may have to have this done every few months. :/ Whatever helps though, right?

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.