Living My Dreams With CF: It's Time For An Update!

I know I have been MIA from my blog lately and I do miss it. I guess I have been busy living my dreams spending time with my girls and working away! It is a busy life when you work full time, come home to two beautiful girls in Maria and Alayna, house chores to do, weekends all full of plans or running here or there, and oh yea I have this thing called cystic fibrosis. It does get very hard to be a superhero or lack there of every day. Sometimes I catch myself looking at the clock and it’s already 9 pm. Where has the night and day gone? It goes even quicker on the weekends. I can tell you this, I wouldn’t have all these great opportunities in life if it wasn’t for Maria and Alayna. They keep me fueled every day to give my best and hold me accountable for my health. So here is a little update about everyone in this household. I know that many of you do not just come here to read what is going on with me

Let’s start with Maria!

I can tell you she is doing well and is the glue to this family. If it wasn’t for her I think my life and Alayna’s life would be beyond NUTS. I have to say I love that Maria is a SAHM (Stay at home mom). I know that was her dream in life to have a child and be SAHM. For anyone out there who thinks being a SAHM is a cake walk, I will tell you it is beyond more work than most of us do in our own careers. A SAHM is unpaid, there are no days off, there are no lunch breaks, etc. This sounds like a job many of us may not want unless I told you were going to be a MOM or DAD. But the rewards of being at home watching Alayna develop, learn, and grow are PRICELESS. There are many days I know Maria is working A LOT HARDER than I do in a single day at my office job! I just want to say thank you for all that you do Maria ; )

If you have read my blog before, you may recall Maria was having a battle with her liver enzymes. This all started a few months after Alayna was born. This was frighten for the both of us as there was no real explanation to have such high liver enzymes. The doctor even requested a liver biopsy be performed which from what Maria told me was nothing I would want done. I have said it before but she is more of a trooper than me when it comes to medical tests. You would think having CF I would be used to all the needles and tests but me and blood tests definitely do not mix. In December, she had her quarterly blood test. We both are happy to report that the liver enzymes have basically returned to almost normal. They are slightly elevated, maybe a point or two. This is great news and we are hoping again in March that the liver enzymes continue to drop.

So what’s new with the princess Alayna!

I am going to keep most of the updates until I complete her 15 month post in the next few days. I still do not understand why time goes so incredibly fast with a toddler. Oh wait, I do understand. There is never a dull moment in our life. There is always something to do or going on.

I will share with you that she is the apple of our eye. There is nothing like your own child running around giving you kiss after kiss for no reason. I guess you could say she loves her mom and dad. She is to the stage where she is really developing a personality. I love witnessing this as she really is full of life. Something we all need to learn from. There is something that I look forward to every day and that is coming home from work to see and hear Alayna get all excited. She runs up to me with her arms reached out for a hug and kiss from her dad. I really need to cherish this because when she hits teenage years I don’t think that she will be nearly as excited to see me when I come home!

That leaves me with one last update on myself!

As you all know I love to blab on and on so I hope this will be sweet and to the point. I have been very busy in all aspects of my life lately. There really is never a dull moment. As soon as that alarm goes off I hit the ground running (I wish I literally was a runner!) with my morning airway treatment, getting ready for work, off to work for my 8 hours, back home, dinner time, some play time with Alayna, a chore to do, then its time for the evening airway treatment. This sounds like my life Monday – Friday. When it comes to weekends they are packed with stuff to do but not as scheduled. I live off a schedule. Any of you CFers feel the same?

In the last few weeks, I have been more involved in the CF community than ever before. I thought I would share some of what has been going on and what I am doing for some of you out there. If it wasn’t for CF and my determination to spread awareness and educate people about this disease I wouldn’t have these great opportunities below.

Reaching out to newly diagnosed parents or even parents to CFers in general is something I really pride myself on. I have been doing this a lot more lately. To me, this is my mission to educate and bring more awareness about what it is like living with CF. There is no better way to do that than to share my life with them. This way they can see that their child can and will have the opportunity to live a normal life. That is what I want for all the parents out there to realize that everything is POSSIBLE. I have been blessed to share my story with many of you.

Some of you have heard from me touting the benefits I have received from my compliance streak. I am almost to a full year of compliance on 2/1/14. Through this compliance streak I have felt AMAZING! I want that for many of my friends as well. Do not wait until you continue to go downhill to make a lifestyle change. It all starts with maintaining the lung function you have now and keeping your lungs clear of mucus. This past week I motivated my cyster to dust off her VEST and start using it again. I am so proud of you for making the first step on being compliant with your airway treatment. Keep it up!! On a side note please visit her blog and provide any advice as she is experiencing some crazy itching from the VEST jacket.

This blog that I have created is being read all over the world and I have actually talked to some of the people who read it. I never thought that I would be reaching people with CF who live in Brazil, South Africa, Canada, and Europe. It's great to know they read what I have to write and they even educate me on how CF is treated in their countries.

We are in a new era of CF where CFers are becoming pregnant and becoming mothers and fathers. I love talking to these people as they are all excited for their new journey. A child will add another motivator for you to be as compliant as possible. I know Alayna has done that for me.

The last few days I have talked with a fibro who recently was FINALLY diagnosed with CF. He is in his late 30s and is struggling with the realization of this disease. He and his wife have a child just as we do. I just cannot imagine learning you have CF after you just had a child a few months ago. All I can say is keep fighting as hard as possible for your wife and child. That is my goal in life to be here as long as I possible can for my family!

We are all in this war together! I love how people will message me after their CF clinic to tell me how the appointment went. We all share our positive news and sometimes negative news. When someone feels down about something regarding their CF, this community is a great place to get a boost back in their step. We are all in this war together my friends.

I am looking forward to a something that I hope will help many parents to young CFers explain why they are doing treatments and taking all these pills. This opportunity came to me from someone who left a comment on my blog. I never thought I would be asked to do something like this. Stay tuned as I will soon feature this on my blog.

All in all I have been very busy to say the least in the CF community. I cannot wait for 2014 to get under way as I have a feeling it's going to be a great year for my family and the CF community. I truly hope this is the year that many of my friends and myself included will benefit from Kalydeco and maybe another pill from our friends at Vertex!!

Always remember………”It’s a GREAT day to be alive!”