It’s order time folks!
Please share this on your facebook, twitter, instagram and other social media so more people can see it and get Shannonigans gear! Shirts will not be printed and sent until the deadline date of May 17th, so be patient. I set the date out a little bit (Sunday May 17th…38 days to order) to give everyone a few paydays in there. Now buy and share it with your friends and family!
This is what the shirts will look like. PLEASE share this with your friends and family as well. The more shirts that are sold means a bigger donation to the CF Foundation! I really need this to be a good fundraiser as well as getting Shannonigans and CF awareness out there. Thank you for your support!
Until next time…
Compliance is a big part of living with CF. I don’t know of any CFer that hasn’t had a time where they slacked off and didn’t do all that they were supposed to. Most of the slacking comes during the teenage years to early twenties. It is hard to see all your friends living a normal life. They don’t have to take time to do breathing treatments or have to take medicine every time they eat or go in the hospital. You want nothing more than to be a “normal” kid/person. CF gets in the way of a “normal” life. CF is my “normal.” It is all I know but that doesn’t mean that I haven’t dreamt of what it would be like to not have to do breathing treatments or be attached to an IV or to not take medicine every time I eat and all the other things that come with the CF territory.
Accepting a new baseline is never easy. What does a new baseline mean you ask? Well a baseline is your “normal.” It is where you are at when you are feeling good and at your best. Everyone’s baseline is different. In the world of CF a baseline refers to where your lung functions are and how you are feeling in correlation with those numbers. With CF your lung functions go down over time since CF is a progressive disease. When I say over time I mean it is not an over night thing. Although you can have an exacerbation that seems to make a drastic change over night.
My lung functions have slowly gone down over the years with plateaus (baseline) along the way. I hit a plateau and stay there for a while, which is considered a baseline, then another series of exacerbations can knock my numbers down. When they get knocked down sometimes I am not able to get back to where I was, thus I hit a new plateau/baseline. The same cycle continues throughout life. I have always said that it is a good thing that CF is a slow progressing disease (for the most part) because if I woke up with 40% lung function after being at 80% the day before I would be a little upset. Not to mention I would not be able to breathe. With CF being slow you have time to adapt to the lower lung function.
I had to stop working due to my CF in the middle of 2004. I was not bouncing back from sickness/exacerbations like I used to and I was getting sick more often. Since CF is progressive it will get worse as time goes on so doing anything that can help slow down the progression is good. It was time for me to focus solely on my health and not getting back to work. It was a very hard decision because I really liked my job as a medical biller. My boss was very understanding and would have let me work from home had the company still allowed that. I then applied for disability and was approved about a year later. It is a shot to the ego that you are sick enough to get disability and that you can’t work anymore. It was hard to process but was the best decision.
I am going to be a little transparent in my post today. I am an open book anyway but some topics are harder than others to talk about or I should say to admit weakness in. I have been a bit incognito lately and all I can say about that is depression sucks! Having depression on top of CF is no fun at all. Depression and CF go hand in hand though and why wouldn’t they, right? Having an incurable progressive genetic disease can tend to make one depressed at times or all the time depending on the life situation.
It is never easy to dodge the “normal people” sick germs. My bonus son has had a doosey of a time since moving here to Tennessee with colds and such. He has bad allergies so I’m sure that played a role in it all. Two days after coming back from winter vacation in Missouri he got sick. Sick enough to keep him out of school for 3 days which is rare. He hates to miss school therefore he powers through it usually. This time was different. I say all that because who do you think is home with him when he is sick…ME. Me, who has a crappy immune system and has to try really hard to not get whatever he has. He was quarantined to his room and not allowed to touch anything outside of his room until he was feeling better….haha. Lysol wipes and spray were my friend. As soon as he was back to school I stripped down his room and pretty much fumigated it with Lysol. I didn’t manage to get what he had this last time.
Guilt. I know I talked a little bit about it in the book but I wanted to revisit it. I may repeat myself, ok I know I will just go with it. haha
As someone with CF you feel guilty for your life (sickness/disease) taking time away from others. I will speak for myself, I feel bad when someone has to stop what they are doing (everyday life) and do something for me that is due to CF or CF related. For instance when people come see me when I am in the hospital I feel bad for them squeezing that in their busy day. I never want to be a burden on people. I never want people to feel sorry for me. I never want people to stick around because they feel bad for me. I never want people’s lives to stop when mine has too. I want people to continue on with their normal everyday life. I have no choice in the matter, my life has to be put on hold from time to time. Others have the choice. Don’t get me wrong I am so thankful when people are able to do things to help me out when I am in the hospital like making sure my bonus son is taken to all his activities when my husband is unable. I appreciate everything everyone does for me and my family with all my heart, it is just hard to accept needing help. I am a very independent person and really dislike it when I am not able to do things for myself. I have had to learn to allow people to do things for me which is very hard for me.
What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.
My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.
I thought I would share my surgery history. Surgeries come with the CF territory. Some people start life with a surgery and others don’t have any for a long time, depends on the person.
I have had multiple sinus surgeries, I have lost count. My first sinus surgery was when I was 10 and my last was when I was 21. I did have one a year for awhile. During the sinus surgeries they clean out all the infection and polyps (basically a growth in the sinus) that have formed. They also have had to drill holes in the sinuses to help them to drain. Your sinuses are just holes in your head. They are not like lungs that are a sack. Sinus surgery is painful but pays off in the long run. When you have lots of thick bacteria infested mucus in your sinuses it can infect your lungs. The lungs and sinuses like to share with each other therefore it is best to get the sinuses checked out. Some children have been referred and later diagnosed with CF after being seen by an Ear, Nose and Throat doctor due to having polyps in their sinuses. Polyps are very common in people with CF. Sinus irrigation is common practice for people with CF. It is good to rinse as much out as possible and hope that you don’t have to have surgery.