High-Blood-Sugar-Induced-Crankypants

It's funny, okay, not funny but seriously dangerous how many times I have to learn a lesson before the lesson learned sinks in. I have been diabetic since I was 13 yrs old so I have had enough years experience to know that I should NEVER guess my glucose (blood sugar) levels. My guess-o-meter is critically flawed compared to my fancy One Touch meter, that was made for such testing.

The other night I had a ravenous appetite and consumed a good healthy amount of snack food. Not nutritionally good food but straight-up junk, like sugary cereal. I had tested before the consumption began but thought I knew best by making the decision to not test again after the eating binge began.

About an hour later B and I were talking and apparently I had a bit of a bad attitude causing him to ask me if I was upset. This should have been trigger #1 to test my blood sugar. I either was already too far gone in my high-blood-sugar-coma or really just didn't think about it. I truly believe is was the coma. I replied to B that I wasn't upset, therefore, we began watching a regular show for the night and I fell asleep after 5-10 minutes. Upon watching up I was a bit shocked as to why I was so sleepy, trigger #2, but again did nothing.

It wasn't until I tested again before going to bed did I find out that my blood sugar was 290! That is WAY high and it probably was higher at the peak just prior to me falling asleep. My crankiness and bad attitude didn't wear off until I had my sugars back down to a safer 150.

Man am I stubborn. I am proud to say I am checking more times per day now. I hope I can stay motivated and my fingertips don't fall off.

~Doodlin'

A Word: Compliance

Last night while doing my nebulizer treatments I was thinking about how long it has been since my last IV (intravenous) treatment and how long it has been since my last in-patient hospitalization. I am proud to say that its been a year and a half (November 2009) since my last IV treatment and about 2.5 years (November 2008) since my last hospitalization. Astonishing!

Growing up I spent lots of time in the hospital, usually 2x a year for up to 14 days each visit. Needless to say I grew very accustom to the hospital. I had "hospital" bedding, slippers, pillows, pj's, etc that would go with me to help make the stay more comfortable. This is how you can identify someone who has spent too much time at the hospital, their hospital room looks like their room at home!

By the end of the treatments I was trying to figure out why my health has either gotten better or stabilized or was it a figment of my imagination? My conclusion is complicated but the gist of it is that I have began to understand and appreciate doing my medications.

I have been apart of so much medical advancement and have been lucky enough to be on the receiving end of the advancements. I think that one of the biggest things I have been able to do is mold my life and lifestyle around CF. While this may appear that I am letting CF control me, I am in fact doing the exact opposite. In order to have freedom from a disease you have to treat it. I have to be able to do all my medications and be able to take time out (sick days, rest days, etc) in order to enjoy my life and in order to be a productive employee.  The older I get the more I really understand and appreciate this concept. It used to be that I would put off the treatments in order to go play, go to a movie, watch tv, or whatever. But the truth is that I would feel sick, short of breath, have headache's, have low or high blood sugars that would leave me feeling depleted. When I started to reverse my priorities and take care of myself I could then really engage in whatever activity I was doing. There is a word in the medical field for all this, compliance.

Compliance is always brought up in CF Clinic. Are you being compliant with all the medications and treatments. This word compliance, is like a hammer-to-the-head, for those with a chronic illness. Seriously, I hated having to answer this question in clinic. Because, no matter how much I strive for perfection I will never be able to be 100% compliant 100% of the time. I am human, not God. I am riddled with errors. As I have found a balance, I can honestly talk about compliance in a more realistic way. I am compliant to the best of my ability and I am always looking/seeking for new ways to be more compliant. For example, doing my Vest is an area of difficulty for me because I hate sitting still for 20 minutes with literally nothing to do. The Vest, for those of you who don't know, vibrates the chest area to help the patient cough up the mucus. The vibration is really strong, so much so that I can't read during the treatment, can't hear the TV over the machine, can't really do anything that requires hand-eye coordination.  I put a commitment on Facebook about this dilemma and got lots of great ideas, like books on tape or podcast. PERFECT! Now I have solved the biggest hurdle in my compliance issue with my Vest treatments.

So, do I think my CF has gotten better, no. Has it stabilized, maybe in some ways. Do I think I have found a happy healthy balance, absolutely. I made a promise awhile ago to doing all my medications and I intend on keeping that promise but I also want to build upon that. I want to do them with a happy heart knowing that its my gateway to a smoother path rather than with dread. If you, as my readers think of fun ways to do things like The Vest or nebulizer or feeding tube treatments please let me know. We can all learn together and we can all make improvements together.

~Doodlin'

Starlight Run

In March I embarked on a huge goal; to run a 5K. I trained for 10 weeks. Starting out running 1 mile 3 times a week and adding .25 miles each week until I was able to run the 3 miles.

That sounds easy enough, right? Well, maybe for those of you who have nice pretty pink healthy lunge tissue. For me, my gosh it was a struggle. It's the kinda of struggle that pushed me to do more, to continue on with my goal and most importantly taught me I could do it if I worked hard and prepared enough.

The biggest struggle was coughing while running. I would be sure not to drink lots of water right before I went for a run, but I am telling you as soon as I coughed while running I would not be able to hold my pee. As you can imagine running while the mucus in your lungs is rattling (weezing) causing you to cough uncontrollably and peeing your pants is a ridiculously saddening feeling for a grow adult. However, as I continued to fight thru the embarrasment, pain of burning lungs, sore abs from coughing and of course sore legs from all the running I gained confidence. I also started to not care about peeing pants. Who was going to know? And if they did why did I care what they thought? They don't know me or my situation to appreciate the fact that I was still attempting to reach for the stars. But I did learn to run in black pants rather than bright colors or gray!

On June 4th I ran the 5K Starlight Fun run in Portland Oregon. On June 4th I dug deeper into my mental and physical depths of strength than ever before. On June 4th I crossed the finish line holding my husbands hand and greeted my mom on the other side.

~Doodlin'

Twenty-nine

This year's birthday was spent just how I wanted; in my pj's watching tv all day long with cheese pizza topped with a sliced tomato for dinner. Perfect.

For years I have been celebrating by going out to dinner to some other sort of event and each year I wonder why I do that to myself. Yes, it's fun. Yes, I enjoy getting all attention for one day. Yes, I love catching up with old friends and family. But.....

Each year gets harder and harder to process emotionally. Each year on or the day before my birthday I feel like my emotions are a mixed bag of nuts. Some emotions are tasty and sweet while others are salty (literally from tears). With each passing year I get closer and closer to the median survival age of 36. I think my gosh, 36 is only 7 years away, I have so much I want to accomplish before then. I feel like the timer for my life is running out on EVERYTHING. I think of what I have accomplished thus far and it simply is not acceptable to me. I want and need to put more footprints in this life. I start to make lists of things I need to do and things I want to do before the next years birthday. I think of sweet things to say to those I love so that I can be sure they know how I felt about them should 7 years go so fast that I forget to say them.

In between frantic thoughts of only having 7 years I think about all the amazing things I have gotten to do. All the great, and I do mean great, people I have encountered in just 29 years. The fact that I spend the last 5 years with a wonderful, caring, intellegent, hardworking, and compassionate husband. I am thankful that I have become an auntie two times over in the past few years. I think fondly on all the trips with all the different people I have been so blessed to travel with and all the people I have met during our travels. The list goes on and on.........

In my attempt to grab the good nuts yesterday I ended up grabing a few unfavorable ones. But the not-so-good-ones help me appreciate the goods ones soooo much more.

~Doodlin'

Thank you to all my peeps for the wonderful happy birthday wishes.

Love thru my diseased teenage eyes

Is love in our teen years really possible? I can pose this question now but in the moments of being 11-to-18 yrs old this question had a definite answer, yes! I sought out to find deep meaningful love from boys, not men or young men but boys. Of course that’s not how I saw it then, they were strapping young men ready to love so fiercely that I had to have their love in order to be someone. In order to be recognized as someone worth more than the disease my body harbored from both male and female peers. I simply thought that if I ‘became’ the person they wanted I could at least get a taste of what love was.  I suppressed so much of who I was, who I wanted to become that I actually became a person I hated.  I became a menace to society. I began dating boys whose hobbies included; stealing, drinking, drugs, sex, and where in and out of juvenile detention. This in my heart was not the road I wanted but the only road I thought would lead me to love.

The other aspect was that my dad had been a rebel of a teenager and I loved my dad. So I thought that if he is capable of love then so are these boys. The saying that little girls grow up to find partners like their fathers is true, unless, they have been raised in an environment that fosters self-esteem that will give them the confidence to reach higher, no matter how great their fathers were.

I went thru many boyfriends and after the end of each I truly felt like I would never find another. The cycle of dating and breaking up was crushing to my already invisible self-esteem. I was hiding so much of the true me and trying to fit a mold of someone I was not that it lead me to want to end my life.

In November 1999 was my first attempt to end my life. After having broken up with a boyfriend for infidelity (can that word even be used in teenage romance?). A boyfriend who was very close to my family, who had on a very basic level supported me thru some hard times in my illness along with my dad’s death, cheated on me. That experience was horrific for many reasons and it only etched deeper in my heart that I was damaged and was not worthy of truly being loved by a boy or man or anyone for that matter.

The idea that I was damaged goods was so powerful, mostly because no one every said to me that I wasn’t. No one of influence in my life ever spoke to me about my self-worth; that I was worth everything the world had to offer. Just a short year after my first attempt to take my life I tried to take it again. Looking back the first attempt really was a plea for help, a cry for attention. The attention needed was NOT my CF but rather my worth as a young impressionable female. The second attempt really was a true wholehearted desire to leave this world. I wanted to be free of discrimination, free of societies idea of value, free of the pain that accompanied CF. All of these things I could not or did not have maturity to express in verbal format.

During the second attempt my mother worked with healthcare professionals to help get me the best care. Their recommendation was an inpatient stay at Emanuel Hospital’s psychiatric ward. In preparation for this stay, I was taken directly from the psych ward at St. Charles Medical Center in Bend, Oregon to Emanuel in Portland, Oregon by security car without my mom or anyone. Just a locked police car of sorts that way I couldn’t escape with my bags that my mother had pack for me. All the clothing she packed had to meet certain requirements; like no drawstrings, as I could use the strings to hang myself. This was and is a very serious side of illness or depression. Upon arrival and after check-in I was in my barren room that consisted of a bare mattress on the floor and toilet whose flushing system was controlled outside my locked room, to my surprise I found a note that my mother had written while packing my bags….. “ I will go the ends of the earth for you.” Writing that makes me cry to this day. That statement was so powerful and still is powerful. I realized that I could push my mother, who loved me more than anyone else on earth, to a point of breaking and she would still write something like that. She, no matter whom else, would love me thru my darkest days. These boys would come and go. I would love and hate. I would find happiness only to have it taken. Yet my mother will always be there, to go to the ends of the earth with and for me!

I never did find that one and only during my teenage years. He never came along. I did find my strength and started to uncover my self-worth, but just a glimpse.

~Doodlin'

Wrapping it up

As we begin closing the books on May 2011, I want to conclude CF Awareness Month by saying this....

CF is horrible, not matter what side of the coin we look at.
CF has taken many things away from me and others with CF.
CF is painful; emotionally and physically.

... BUT...

CF has taught me many lessons for which I am SO grateful for.
CF has made me compassionate.
CF has made me fiercely independent.
CF has made me wise beyond my years.
CF has made me see what a blessing every breath we ALL take is.
CF has allowed me to be vulnerable.
CF has shown me love beyond measures.

... AND...

We might find a cure in my lifetime, but either way I have GOD on my side trumping EVERYTHING.
My life is fantastic because I have chosen mind over body; not every moment, but a good chunk of it.
We all will die, no pill or cure or potion or lotion will change this.

... THEREFORE...

I promise to be passionate about life until I take my last breath.
I promise to attempt to make the world better while I am here or at least make a difference.
I promise to never loose hope in life and justice for our out of control world.

Thank you for taking the time to read this months posts about Cystic Fibrosis. Knowledge is power!

Life is rich and messy. I hope I have enriched it.

~Doodlin'

Face of Flexibilty

My plan to introduce a new face of CF weekly was rudely interupted by Blogger not working last week. Which is so interesting because this weeks new face of CF presents that being flexible is vital to fighting CF with positive energy. Being able to take the challenges with some degree of flexibilty will allow you to live the best life you can.

Jerry Cahill has/is doing just that. He hasn't given up doing what he wants to do or enjoys doing but rather he has remained flexible as CF continues to throw rocks in his path. It's Not About CF gracioulsy introduces us into Jerry's CF journey and how he has handled this every changing disease.

~Doodlin'