Thursday, June 28, 2012

30 Year Reflections: Part I


You know the old saying "don't wish time away because it will get away from you" well there is a reason for some sayings. There is truth to it. I simply can't believe I am standing on 30's door step.

It feels like just a short few years ago I was eagerly anticipating starting Junior High (middle school). I remember all the friends I made in elementray and how we or most of us were transfering to the same junior high. I was starting to get a bit boy crazy, in fact I had developed a crush on a certain someone who held my hand at our end of the year 5th grade party. I remember some fantastic games of wall-ball, tether-ball, four square and all the great tricks I had learned on the monkey bars.

Ah, the simplicity of those years.

I also remember another story. A story of many missed school days. A plot that included many many days/nights in a hospital bed, wishing I could be outside playing with my friends. A story that includes children being mean, making fun of me and down-right harrassing me all because I had CF. A disease they didn't grasp and a disease that their parents didn't want to take the time to understand thus influencing their children's mean spirited ignorance. But I was 10. I was a mere child whose feeling where deeply hurt because I couldn't understand the hatred, the meanness, the fear they held.

Ah, the simple-complexity of those years.

Time marked on. Much of the time without me knowing. One thing that I can say for myself is that time is a great healer. Many of those children who were mean, started to learn (though school and their parents) that CF wasn't scary. Wasn't something they needed to fear. Some became my friends.

My health also started to make a small but miraculous changes for the better. The medical advancements were starting to really take a running start. Many drugs were introduced that dramatically changed the quality of life for so many. I was begining to participate in school sports. I was able to do so much more than I ever had before. The trips to the hospital became less frequent.

While I was becoming more of a teenage and leaving behind more and more of my child-like behaviors, some truths remained etched on my soul.

Early death. succumbing to an terminal illness.

While I knew God, I didn't believe Him or trust Him. Not yet anyways. I also didn't believe that the new drugs that were currently making me feel like a rock star would last or have any bearing on my longevity.

I was a difficult person a lot of the time. But a few folks never left me. They never gave up on me. Even when I began to sabotage the relationships they pushed forward, they carried the strength for me, they saw past the rough exterior.

If I knew then what I know today, I would not have let time just march on by.


Saturday, June 23, 2012

Am I An Expert?!

Am I an expert? Nope. Not even in the field of CF or diabetes or arthritis or patient advocacy or anything for that matter. I do have more knowledge than some on these and other various topics. Why? Because I walk in the trenches of the disease and areas surrounding the disease.

Every. Single. Day.

Just like someone with straight hair understands the difficulty of attempting to curl it. Does this mean they understand every core aspect of everyone who has straight hair? Nope. But I am sure they have an opinion on what hair products seem to work better than other, why? from experience.

So, dear nay-sayers, while I am not an expert (nor have I ever claimed to be) I do have an opinion whose foundation is fairly strong because of my experience because my reality is CF, is diabetes, is arthritis, is patient advocacy 24/7 and all things that intermingle between it all.

It is hurtful when those very close to you judge how your handling your disease(s). When they assume and treat you as though you are ignorant in the topics surrounding your disease(s) only to use their perceived assumptions against you. To call you names, to run your entire existence in the mud, to make an already difficult life (at times) even more difficult. We do the best we can with the information given to us. Sometimes we are wrong. Sometimes we mess up. But please don't think we are ignorant or unknowing because dear one we spend thousands and thousands to get expert advise. We are treated by some of the most brilliant people in the world.

We would be in a better a place if you could support us. Help us. Encourage us. Promote healthy two-sided conversations. Until that day comes all I can do is forgive your nasty words. Rise above to a better place and hope for a better encounter next time.


Thursday, June 21, 2012

Thankful Thursday: Cooking with Love

I am so thankful that I was able to learn the basics of cooking from a wonderfully loving individual; Nana. She alone shall be accredited to teaching me many lessons on preparing food. Her taste in food is   heavy southern comfort meals that I loved to eat growing up. I still crave those comfort meals and still prepare them every once in awhile. But more importantly what she transferred to me was a love of preparing wholesome meals for my loved ones.

I believe this is the most magical ingredient of all. Adding love to any dish will surely be a hit. Since B and I got married I have enjoyed cooking for him. I delight in seeing his face after a long arduous day at work as he walks in the door to smell another one of my creations. I secretly think he dreams about what dinner will be each night. I love watching him inhale the plate of food. I love that I am in some small way not only satisfying his hunger but helping be the best him he can be by giving a healthy meal. We, of course, have our guilty pleasures that we indulge in now and then.

I have really been pushing the boundaries of my cooking abilities. I am venturing into unknown territories. This brings some frustration when the dish doesn't turn out like I think it should or how the picture of the recipe looks, but its fun.

Surprisingly to most, B loves to cook. He loves food. He loves trying new things and he's awesome at giving feedback. A lot of times we pick out new recipes together and work together on Sunday's to prepare the meal. Such a great way to spend quality time together.

Cooking with love is something I am beyond grateful that Nana passed down to me.

Off to cook dinner.


Monday, June 18, 2012

A Little Dream; Realized

For a couple of years now our CF care centers advisory board has dreamt of having a formal support group and I have been quit the annoying advocate for it. A safe place for CF'ers to open up, to share in their journey, to find encouragement when things seem daunting, to celebrate new journeys and new successes, have a place to socialize and most importantly to have a group of others who are walking in the same brand of shoes (the sizes vary!).

After years of debating the ways to go about this and of trying to figure out how to coordinate such a group we have finally put together our first meeting. The meeting was small but amazingly awesome. There was conversation, laughing, brainstorming and all the things we humans do when we get-together when we socialize. Our small little CF center just took one step for mankind and one GIANT leap for those with CF.

For so long I have lived with a disease that not only isolated me much of the time from the things I loved but it also placed limitations on my relationships with others like me. Today's technology has began to bridge that gap, while not perfect it is something better than what we had. nothing.

We as a community as a whole are also learning ways to safely host multiple CF patients within the same room without subjecting them to each others germs and possible cross contamination.

I am elated. I am beyond thankful. I am feeling as thought one small victory in over-coming the hurdles that CF builds has been won. I am so proud of my care team for not giving up and running with my crazy notions. This is something so close to my heart. Something I needed like 10 yrs ago. I hope that no CF patient has to go through such loneliness, such feelings of separation, such feelings of longing for socialization during isolation.

Humans by nature long for and need to socialize on some level with those whose capacity is like theirs. There is real value in developing relationships with those whose life experience is similar to ours. We all are better off in some way or another.

Do you participate in a support group (any group not just CF)? What is the most valuable thing about your support group?


Thursday, June 14, 2012

Thankful Thursday: Power of Choice

The past few days and weeks I have been on the edge of great emotions. I am not exactly sure as to why, but I do know there are a handful of contributing factors. The weather has been up and down, my joints have been really hurting, the hubby is working long hours, my 30th birthday is fast approaching and on and on.....

Today, I was standing in my closet choosing what to wear. My first thought was something drab that would cover me up, keep me comfy, keep all my self-conceived flaws out of view and plainly because I didn't feel particularly spunky. But, as I started to pull out a shirt then pants my mind wondered to that place of choosing a bad day or deliberately attempting to choose a good day. Your probably thinking I am crazy that my mind would go thru all that just over picking out what to wear. But for me, my cloths are as creative as I get. For me, they are an expression of who I am, how I am feeling and what I plan to accomplish that day. The labels are not important to me but the "look" and "feel" are.

After looking at what I had pulled out I made a choice to pull out a different less draby shirt. What I pulled out was a bright green shirt with black stripes. It all began with choice number one.

As the day went along I found myself at crossroads of choosing positive options or negative. All along the way I found that I veered towards the negative and had to deliberately opt for the positive. Decision by decision I am now wrapping up my day. The day was positive. While not easy nor was making it a positive day easy; nonetheless is was positive.

As I sit here writing this post of what I am thankful for I am realizing (not for the first time, unfortunately) that I have the power to choose. We all have the power to choose positive energy. Does this mean it will be easy, heck no but it does mean you'll be in a slightly better place mentally and emotionally than if you made the opposite decision.

Today, I am thankful for the power of choice. The power to stop at each decision each crossroad and choose which directional arrow I am going to follow. The power to allow my circumstances; whether controllable or not, to edify me or consume me.


Tuesday, June 12, 2012

Creaky Joints and Wraps

The past months weather here in the Pacific Northwest has been anything but desirable, truly. We had a couple of days that the mercury hit 80+ degrees but other than that it has been cold, windy and rainy. This   fluctuation in temperature and weather irritates my joints.

I was given the diagnoses of rheumatoid arthritis a few years back after a ridiculously excruciating experience with gout. Apparently, CF physicians are seeing this more and more as patients live longer. The exact reason is a bit unknown given that CF affects every system in the body. For me, the pain has been debilitating at times or the pain so great that I need heavy duty drugs to bring relief which has a lovely side affect of extreme drowsiness. So, either way I am pretty worthless when the pain rears its ugly head.

The one thing that does help depending on the level of pain is heat. I used to take blistering hot baths or showers to help bring relief. But as of late I have found a wonderful little thing by Earth Therapeutics that you heat in the microwave and wrap around whatever body part needs it most. I usually use 3 of these wraps at a time.

Relaxing Microwaveable Comfort Wrap - Green

With the weather fluctuations the wraps have been a staple for being able to fall asleep. Night time is worst time to deal with pain. If I am up and about its much easier to "put my pain in some other place" and attempt to carry on. But at night, when its quite and your mind sticks to one thought or thing is by far the most miserable time to experience pain. Plus it sort of feels lonely, even with the hubby snoring right next to me.

Any ideas on how to help relief the pain during the day, say, when I'm not at home but running errands or attending appointments?


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