When I first came up with this title and subject matter all I could think of was “Bills bills bills” by Destinys Child (flash back to high school). Then I decided to replace some lyrics from the song and have been singing around the house “you can take your pills, can take your little blue pills, can take your giant horse pills and then maybe we can chill”. Cheesy I know, but I love making songs out of everything. My mom used to harass me as a kid about my school work and tell me “if you studied everything as much as you memorize your songs you would have straight As!” But back to pills! Medication is always a fun subject but one that’s extremely important to bring up for anyone really, not just those that have chronic illness.
I am often asked how I manage being a parent while being in pain or sick etc. I am asked if I would have known about my illness before being pregnant would I have decided to not be a parent? I am doubted by many on what I am able to handle with my disease and often held back from doing the things I want to do or accomplish in life because of the doubters. My response is often that you only live once. Being sick should not hold you back from the things you truly want in life or the things in life that will make you happy. Happiness is hard to come by, often, when you are in pain and ill. So we should cherish the moments of happiness every chance we get. Continue reading
A lot of what you deal with, with chronic illness is all centered around how to maintain a normal life whilst being sick at the same time. Many of my posts highlight what we have to do to portray this normal life to family, friends and others around us. Actually keeping up with this life is a balancing act on a very thin line. So how do we do it? What do we sacrifice? Is a balance even possible?
One thing I can really say about having chronic illness (just kidding I have lots to say haha) is that you learn how to act. We become the star in the story of our lives. We are pro’s at deceiving people with how we really feel and become very careful about who we reveal who we are and how we feel to. In this theatrical number we study normalcy, as to not let on our struggles to those around us. It’s not that we want this, it’s that we start to learn how well society can handle the truth. If we are not careful, we will get burned. Continue reading
I recently went to see a production of Into the Woods. A favorite song of mine from this musical states “You are not alone. No one is alone”. For some reason this has stuck with me the last few days since. I sit back and think about how these words roll off the tongue so well when it is you saying it to someone else. Looking in the mirror and telling yourself you’re not alone is a whole other picture. In the world of chronic illness it is so easy to be sucked into this world of secluded misery. You begin to realize the amount of people that drop out of your life. You feel like even those that have stuck by your side do not understand what you’re going through… And to a certain extent they obviously don’t. You blame yourself on occasion. Telling yourself maybe you could be stronger, maybe the pain yesterday wasn’t as bad as you were making it out to be, maybe I could fight a little harder, maybe it’s all in my head and I can make myself better. It’s easy to be sucked into the oblivion of trying to rationalize your situation. It often feels like no one understands this cycle we get caught in. A cycle that solves nothing and gets us no where. So what do we do? We fight. Right? That’s what everyone else does. They fight. And here we are again at the other end of the circle… where all is easier said than done.
It’s time to get real about doctors and their treatment of their patients. As a patient we often view doctors as an authority. With their extensive training and eduction in medicine, this is normal. When we think of a doctor we think of someone kind, patient, intelligent, and ready to serve people, for a greater purpose. We expect, when we go to visit the doctor, their undivided attention, utmost compassion, concern for our well being, and the drive to do what ever it takes to help their patients. Often times what we get instead is a quick hello, poked and prodded, barely a glance, maybe an eye roll or two, a prescription and a fat bill on the way out. Continue reading
Funny thing about life is that regardless of what you go through on a daily basis, i.e. work, school, kids, disease, you know the usual stuff… life happens. Plain and simple, It keeps going. Things never seem to stop to give you a break and a change to take a deep breath, to take in everything that has just happened. I fully intend to keep the wrap up of the background series medically focused, however it needs to be known that in the midst of all the madness, real life every day ups and downs are always ongoing too. Continue reading
WARNING: This blog post contains graphic details and pictures that may make you squirm! Continue reading
Before I continue with the Background series I want to say something about this blog. I think it’s human nature to want to say something to convey to people that we care in the matters of health and wish there was something we could do to help. The classic response is almost always “I’m Sorry”. Which I find to be a bit funny considering the circumstances have nothing to do with anything anyone has done…but the sentiment is what matters. Then there is the other side where folks doubt, or get impatient with your health, think you use it as an excuse or who knows what (I have had far too many run ins with people like this). Anyways I have been flooded with comments from so many people the last week with the first. I want to stress I started this blog to help others, but obviously first provide the background of my experience. I cannot thank you all enough for your comments and well wishes. I only hope that as I move forward with this project I can offer help to anyone who may be in the face of chronic illness, the medical system, or who knows what; anything to help avoid some of the tough times, I and many others have gone through. Thank you all very much. Continue reading
When I decided to start this background series I certainly never thought it would be this long! Going through the entirety of everything that has happened in the last 10-15 years, you start to forget all the appointments, procedures, diagnosis, etc… It all just starts to blend together, the more time you spend in waiting rooms, ER’s and hospital beds they all start to look the same. This next series of events is pretty hazy to me but here’s what I know. It was in no way how I wanted to start off as a mother. It was extremely hard, insanely emotional, but as always I push through. Each background segment, I can tell you at the time I didn’t things could get worse, and then something new would happen. If there is anything you learn when being sick, it is that you become a master of disguise, a pro at putting on a face (a topic I will cover sometime after this series). Continue reading