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.

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.