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
Everyone wants to be strong for those around them. This may be magnified when it comes to someone with a chronic illness. You spend a lot of time telling everyone you are “fine” when they ask how you are because if you said how you really felt all the time people would feel sorry for you or think you were faking. You automatically want to be strong for those around you. You want them to be okay. You don’t want everyone to worry about you. Your thinking is that everyone has their own life to worry about and worrying won’t fix anything.
The other side of the coin is that you want to know that your situation affects them and that you are thought about in regards to your health. There are times that you cry alone because you are scared. You don’t want to show anyone that side because you don’t want them to be scared for you. Sometimes you just want to throw a pity party because your life sucks having to deal with all the health crap. After your pity party/freak out moment you pick yourself up, dust yourself off and keep going. Being strong is not always easy to do but if you aren’t a fighter your illness will win Fight until your last breath!
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
I was emailed by another CFer who has a blog, Inhaling Hope. She asked if I would like to be a part of her CF Moms section of her blog. Of course I said yes! Here is a link to my interview with her. I think she did great.
There are a lot of great CF blogs out there and I am thankful to be counted amongst them.
Thank you Inhaling Hope!
What is a Bonus Mom you ask? Well that would be me! We came up with Bonus mom instead of step mom. Most all the step moms in the books, movies and TV are evil and mean. I, however, am not evil and mean so we had to come up with something. It basically boils down to me being a bonus in the kids lives. We do use “step mom or step son/daughter” when we introduce each other since it is standard practice for everyone else…haha.
I am so blessed to have them in my life. I am thankful for their existence. No matter how I got them in my life I am happy to call them my bonus kids.
“Playing the Cards Life has Dealt”
I get asked if I can have children quite often. I have many friends with CF that have biological children. Having children is something that needs to be discussed with your doctor so that they can determine what is best. Women with CF are able to have children but may have some difficulty getting pregnant due to the thick cervical mucus that the CF body produces. Some may also have fertility issues. Ninety-seven percent of men with CF are sterile.
If you want to conceive and one person has CF or is a carrier then genetic testing can be done on the person who does not have CF to see if they are a carrier. There is a one in four chance that your child will have CF if both people are carriers of the CF gene. Some people choose not to have genetic testing done and that is their choice. You should discuss getting pregnant with your CF doctor. Most likely once you voice an interest of getting pregnant to your CF doctor, they will suggest genetic counseling. Genetic counseling consists of the genetic counselor getting medical history information about yours and your spouse’s/significant other’s family. The medical history will help the genetic counselor to see risk for inherited diseases. If there is a risk then you will receive information about the diseases and the level of risk. A lot of times you do not have to do genetic counseling if you already know that you are a carrier of CF or other diseases. You can bypass the counseling and go straight to getting the genetic testing started. Once the results are in then you can make a better decision about getting pregnant. Pregnancy should be under a doctor’s supervision so that you get the best care possible. Pregnancy can be hard on a healthy woman’s body, so having CF and carrying a pregnancy can be very difficult.