Sunday we had my local CF walk. Well I use the word “walk” loosely because it was a field day and it was FABULOUS!!! This event is the smaller of the two in my area, there are only about 7 teams so it is very quaint and fun. They did many field day activities for the kids like football toss, run the bases, dodge ball, sack race and more! The kids all had a blast and were good and worn out. The adults got to hang out under our canopies and watch the kids enjoy themselves. We did do a lap around the trail at the park to say we did an actual walk…hahaha. I hope our walks continue in this direction because this was so much more fun than just a walk and a mass of people walking which means craziness. I also had people post pictures to Facebook of themselves in their Shannonigans gear on Sunday so that they could be a part of the day from a far. I will leave you with a few pictures from our day. Continue reading
There are many people that are very angry at CF for what it does to a person. My personal opinion is don’t waste your energy on being mad at a disease you have no control over. Let me stop right there and explain. Yes, you have some control over your symptoms and how you take care of yourself BUT in the big picture you have no control of what the outcome is. Death is the result of life for everyone. People with an incurable disease will most likely meet that end result sooner than others. That doesn’t mean that you need to waste precious time worrying or being mad at something you have no control over. It’s like being mad because you have to wait in a line. Where does being mad get you? Does it make the line move faster? Does it get you to the front of the line? No. If anything it will take longer (or seem that way) because you are bent out of shape over something you have no control over. There are many scenarios I could use to demonstrate the same principal but I think you get the idea of what I mean. Continue reading
First of all before I get into this post. I just have to say, it is so nice to have a working laptop again. My laptop quit working a few weeks back. I turned it on and it had on screen. I held off as long as I could but being stuck in the office at the desk is not the way I like to spend my days and evenings. It was tax free weekend this past weekend so I bit the bullet and got a new laptop. Of course the one I chose was sold out and I had to wait for it to be sent to me. Well today it got here and I am tying this on my new laptop!!! Freedom!!!!
Now back to the point of this post…. Continue reading
Looks like I have been MIA for a month…well let me explain. I took a road trip to see my friend who lives outside of Chicago and made a few pit stops along the way to see another friend and my cousin and her family. That was a week of the past month. I had a great time and it was a lot of driving for little ol me all by myself. When I got back from my road trip, early morning football workouts started for my bonus son along with other afternoon practices. Then 3 days of baseball tryouts on top of that. So needless to say I have been a bit busy when you add in all the normal family life stuff, house work, doctor appointments, time with friends and more. I have had a few lazy days here and there and tried to take advantage of them but then I feel guilty for laying around. I feel like I should be doing something more substantial. I am blessed to be able to be home and do all the running around. The month we didn’t have my bonus son while he was with his mom was boring and we couldn’t wait for him to get home. Contrary to what some may think, I am unable to work due to the time it takes to take care of myself and how often I am sick. I am thankful my life has played out the way it has because I have time to take care of me and my family. I know how hard it was working and taking care of myself when I was working and I didn’t have my bonus kids then. I can’t imagine doing that now with all the extras in my life. It is already overwhelming when I have to be in the hospital and miss things or on IVs and am drained. Heck it is hard enough when I am not having a good day in general and have stuff to do.
My bonus son is with his mother for his time with her for the summer right now. With him being gone brings a lot of free time for me. I like having something to do or an option of something to do. Of course I like having free time too where I can be lazy and watch TV. Having all this free time is making me really miss being in the working world. I miss feeling accomplished by doing something productive in the work force. Continue reading
The last thing I will talk about is infertility and all that goes along with that. Unfortunately, men with CF get the raw end of the deal. Upwards of 97% of men with CF are infertile. That’s not to say that through the magic of medicine that they can’t reproduce. It just take a lot more time, effort and money to do so. Once again the dang thick sticky mucus puts a stop to things in our bodies. There is mucus throughout your body which is to include the cervix of women. With that said, the thick mucus doesn’t allow the sperm to get where it needs to go to fertilize the egg. The egg itself might have trouble traveling down the fallopian tube also. So needless to say it could take a real miracle of God for some CF women to get pregnant. Continue reading
Airway clearance is a big part of life with CF. There are many different ways to do airway clearance. Pictured are a few handheld devices. All of these you either inhaled into to expand your lungs or you breathe into to help vibrate the lungs, which loosens up mucus and makes you cough. There is also the vest, which, I use. There are others not pictured or mentioned. The goal of airway clearance is to loosen up all the mucus in the lungs so that you can cough it out. It only has one way out and we have to work for it. I joke that I wish I had a spit release valve, like on a trumpet, so that I could open it and blow it all out. It is a lot of work coughing out all the junk. We don’t have control over when we cough. Well I should say that doesn’t mean that we sure don’t try to control it. My husband likes to park in the “back 40” in parking lots. When he pulls in the spot he says, “AIRWAY CLEARANCE!” (in a sweet singing voice) Exercise is also another great form of airway clearance.
Some CFers dislike the VEST and prefer the old standard of clapping (PD&C=postural drainage and clapping). That is where you lay down or sit up (depends on what you prefer) and someone claps with cupped hands on your back and sides to help loosen the stuff up so you can cough it out. When I was growing up we called it “beating,” heck we still do. Many times I would hear my mom says, “Shannon, come here I need to beat you.” I have been known to ask my husband to beat me. The kids like to joke that “dad beats Shannon and she takes drugs.” There is also a percussor (pictured below) that does the same thing as clapping through vibration. It vibrates the lungs to loosen the junk so make it easier to cough out.
Moving (as in packing up your things and moving to another house) when you have CF is not the easiest thing to accomplish. When you are in the military and get new orders the military relocates you. They send a moving company to pack all your things and they load it all onto a truck and move it to where you are moving. Then when you get to the new location then unload the truck and will even unpack the boxes if you would like. With that said, when you move to a new place during your assignment it is on your own man power. We rented an apartment when we relocated to Tennessee last July because we didn’t know the area or how the market was here. After being in the apartment a short while we realized that we needed to move into a house, whether it was renting or buying. We started the search at the beginning of February and put a contract on a house at the end of February. We closed on the house on April 1st. We had to pack ourselves and move it all from the 2nd floor apartment. Well we could have paid for a moving company but I am cheap and stubborn. haha We moved things throughout the week and moved all the big stuff on Saturday with the help of my husband’s co-workers. That meant that “she-woman Shannon” had to show up and get things done. My husband took off one day to get some things moved and one of my friends helped load things into the truck which was a great help. I was flying solo the other 2 days. Continue reading
“Playing the Cards Life has Dealt”
The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school. January of my senior year I had the opportunity to go to Hawaii through the Dream Factory. The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does. My wish was to go back to Hawaii. I have family that lives in Hawaii and it is my favorite place in the world. I haven’t been anywhere outside of the US but still it is my favorite place to go/be. The only weird thing was my fiancé went with me, not so much of a kid thing to do. In July of 1998 we got married in a big catholic ceremony. We moved to Pittsburg, KS two days after getting married. My husband was going to start college at Pittsburg State University and wanted to walk on the football team.
While I was living in Pittsburg I hung out with my aunt a lot since she lived there. She invited me to a women’s bible study. I was very interested because I had a lot of questions that I wanted answered. One of my questions was, did God give me this disease and why? I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven. I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that. I know there is a reason I have CF I just cannot see the magnitude of why yet. I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.