Thursday, March 24, 2011

Things are not always what they seem...

If you meet me on the street you most likely would have no idea that I have CF. You may think I have asthma and that I am a bit on the skinny side but never a terminal illness. That's the most difficult part of having CF. For this reason alone most people don't understand what it means to have CF. We can associate cancer with the heart break of losing hair, becoming frail, or the removal of breasts, kidneys, skin, etc. See with CF unless you have a lung transplant, which a high percentage of CF patients have/will need, you don't have anything tangible to associate with CF.

For me CF brings on spouts of coughing so intense that it causes uncontrolled urination and vomiting. The vomiting is less frequent than urination but still neither is better than the other. I am sure most people have had a cold that caused them to cough so much their ribs hurt. Well it's sort of like that but on a daily bases for the entirety of your life. I also struggle with joint pain, the pain is there every single day and only when completely intolerable do I take narcotics to help ease the pain. Just those two aliments can be enough to bring me to tears and hate the realization of a new dawn. Not to mention the complications of having a feeding tube, CF related diabetes, enlarge liver and the freakin' list goes on and on.......

I am a young women who's husband has assisted her with everyday tasks; like assistance to the restroom more times than I can remember.  He, a 26 year old, has been a caretaker to a young (28 year old) woman, not a 80 year old lady who has lived a full life and before him was my mother. They are my Every Day Heroes!

So remember, the person next to you in the grocery line or the driver in the lane across from you might have an outer appearance that resembles nothing of what their struggles are. Things are not always what they kind to one another. I know when I have a difficult day a nice smile from the person in the grocery line really warms my heart! Try it sometime it might warms your too.


Friday, March 11, 2011

A Change

Many people, myself included, go thru life mundanely. We go thru our daily routines at such high speeds that our memories start to become a blur or a smear in our mind. This pace which we know is not sustainable yet we don't know how to slow it down causing frustration.

For me frustration is something I know quite well and to be honest I tend to fall apart under extreme frustration. However, the older I get the more I understand what triggers my frustration; a place of being and/or feeling  helpless. I can't even begin to explain just how much being helpless impacts me. It causes insomnia, emotional breakdowns, depression, exhaustion, acne breakouts and lack of motivation. Now, to be clear, I don't experience these symptoms when I am mildly frustrated, but REALLY REALLY frustrated. The type of frustration where you feel as though you have tried every trick in the bag, every suggestion by others and really just about anything and everything.

Over the past year or so I have experienced this extreme frustration and over the year I had not been able to find relief. I tried talking about it with those who I felt had power to help and I tried changing my view of the situation in hopes to also change my attitude all to no avail. It was just after the first of the new year that it dawned on me, the problem was me! How was that I had not even considered that?! I was the one frustrated. I was the one who needed to change. So change is exactly what I did and have been doing for the past few months.

I have changed my course by evaluating what I want, what I am good at, and what I feel my purpose is. My new path is to pursue a public speaking venture that focuses on patient advocacy.