Wee hour musings...

Yep, another night with troubled sleep. I am not sure why, I am not in terrible pain...just my usual amount of discomfort. I am not on steroids...to be on them almost guarantees many sleepless nights until I am off of them. My sugars are good...no lows or highs. Hell, my period has even come and gone. So now why can't I sleep? Maybe my mind is simply too awake with thoughts. It is true that I am thinking about so many, one particular CF'er especially. It is all in her blog which is graciously updated by her closest friends daily. In summary, Gina is post transplant one month and is still having a rough time of it all. She has had several close calls, but somehow through her amazing strength and spirit, she gets through each struggle. My words aren't even close to adequate when it comes to describing the tenacity that she has for life. I am just in awe of her, she truly is an inspiration.

Other thoughts...first let me grab a few gummy bears, I think better with every chewy bite. I am not ashamed to admit it, I am a gummy bear addict! You know those 3lb bags that they sell in Target stores? I have at least a few of those massive bags on hand in case I have a severe craving for them. There is something about the way my teeth sink into their little bodies along with the resultant tangy sweetness that floods my mouth. My dog is even hooked on them. She can hear me rustling that bag from upstairs, I guess it is much like opening a can of tuna for a cat. No matter where they are, they can hear it and come running!

Okay, now I have had my gummy fix. Back to serious thought...the other day, a family member said some all too familiar words to me after she saw me rubbing my sore joints after a short walk (I am able to walk short distances, otherwise it is the wheelchair for me), "But you don't look like you are hurting..." I know that she did not mean any harm, but personally, I hate it when people say that to me or anyone with "invisible" illnesses. Just because my ailment can't be plainly seen, it doesn't mean that I don't suffer or that my illness is not real. No, I don't have a giant tumor growing out of my head or have some other obvious deformity....all of my problems are inside of me, unseen to the naked eye but there all the same. I know because I live with the ramifications on a daily basis...I often urge the disbelievers to check out this website, But You Don't Look Sick and read about the spoon theory. It describes me to a tee, I have only so much energy to do things and have to actually plan them out. Because I am exhausted easily, I take shortcuts and tend to think about ways to conserve energy. Unfortunately, some people aren't sympathetic when I say that I am too tired and need to rest. They will say things like, "But you rest all day long, you shouldn't be tired.." and so forth. Some days, I feel like I can tackle the world and try to do everything which unfortunately, comes back and bites me in the ass later, taking days to recover from my sudden burst of energy. Then there are days in which I am just so damned bone tired that I can't move, all I want to do is sleep and even that isn't enough.

People who are healthy often take this stuff for granted and I am jealous of them. Yes...I am admitting it...the green eyed monster lurks behind my hazel eyes whenever I observe carefree behavior by others. How wonderful it would be to not have to PLAN an outing....a simple jaunt involves packing my emergency equipment (a huge backpack full of trach supplies, extra batteries for my vent, a trusty ambu bag and other goodies), my duffle bag sized purse (over the years, I have graduated to larger and grander purses, I wonder if I will ever graduate to a suitcase!LOL!), my wheelchair...you get the point. It is alot of stuff and requires a small army to help transport it. It could be worse though, I could be strictly homebound and not be able to see the outdoors which would suck, so I will take what I can and savor it whenever those opportunities come about.

Well my friends..I will close for now...I am finally getting a bit drowsy so now I will put my pen down so to speak and try to shut my eyes. Good night and peace, hugs Jenn :)