Tuesday, April 16, 2013


One of the hardest things about having a chronic illness is that there is TOO MUCH INFORMATION.  Books, commercials, infomercials, videos, internet websites, etc all have something to say about every medical problem that has ever existed.  Some claim to be a cure-all while others boast improved everything.  Some actually have good information but how does one sift through it all?

It's a daunting task for any normal person to try to make sense of it all, let alone someone who struggles with pain, fatigue, and concentration.  It's also frustrating because in so many areas of life, the more you learn, research, absorb - the better prepared you can be to make good decisions about whatever it is you are focused on at the time.  But in the area of chronic illness, there are so many conflicting opinions about what is the 'best' way to heal this or that, that it can make one want to scream.

I'm the kind of person that if there is anything I can be doing to improve my odds, I will do it.  I want to be sure I'm doing everything I'm physically capable of to ensure my best chances of healing.  So, when there are so many different ideas about what it is that I should try, it's hard to not feel like I'm not doing enough.  And even though I do struggle with feeling this way, I know it couldn't be further from the truth.  I get up every day and read daily emails with information on my illness and treatment guidelines.  I have a pill box for AM/PM drugs, vitamins, and supplements I must take each day and it's something I never skip.  I spend every minute I'm awake (and often even when I'm dreaming) aware of my illness, of how I feel.  I keep a daily symptom journal and most importantly, I have a doctor I trust that works with me.  He listens to my problems and doesn't dismiss my thoughts or ideas about my situation.  In many ways, he's become my filter for the information I do read and think might have merit.  I am able to bounce stuff off of him and see what his opinion is and he usually has websites, medical papers, or personal experience to back up what that opinion is.  No doctor is perfect but I'm thankful that, for now, I have a doctor that treats me like I'm a real person. 

Another great help has been my sister.  She's much more into biology than I ever will be and when I'm too tired to think or concentrate on something, I will usually ask her to research something and give me her opinion.  Have someone like that I can go to is another blessing amidst all of this.

So, if you know someone who struggles with a chronic illness and hear them say they are feeling overwhelmed or confused about their situation, and you are able to help them by doing some research for them or helping them find a new doctor that will work with them - you could be such a blessing to them!  They may not always have the energy or the wits to show just how thankful they are but trust me, they will appreciate you helping bear that load.

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