The Women’s March on Washington

I was there.  Yes, I went.  I participated in the largest protest in the country.  And it was AMAZING!

We like to avoid politics here at CFR so I will not voice any of the reasons I went.  What I do want to do is talk about my experience as a person with CF.

Continue reading The Women’s March on Washington

The things we do for the hospital

Ironically I had this post planned for the end of January but as I mentioned in my last post I caught the flu and needed to be hospitalized.  So this post got pushed back and I got to try out the things I posted in it.

Though most of us don’t let CF define us, there are times when it does dictate our lives.  Sometimes it can be as big as not advancing in our career because we Continue reading The things we do for the hospital

That is NOT pity worthy IMO

By Amy Braid

I’m currently inpatient getting IV antibiotics. I caught the flu a few weeks ago and as per the course it wreaked havoc on my lungs. But after a week I’m feeling better already and counting down to discharge day.

Continue reading That is NOT pity worthy IMO

Hospital Must-Haves to Pack

By: Amy Braid

As I sit here doing my nightly treatments, coughing my face off, sounding like a freight train coming through a tunnel (I dunno it was all I could think of!), I decided to write up a quick blog post.  I am hoping that the two weeks of oral Continue reading Hospital Must-Haves to Pack

Childless in the Age of Social Media

By Amy Braid

As I have mentioned before I have two step kids.  Neither of which I knew as babies.  I was brought in when they were well past their diaper and nap time stages (phew).  But having step children and having children of your own are two entirely different things.  I love them both and I am so blessed to have them in my life.  They have allowed me to be a mom when I thought that would never happen.

But not having babies in this world of social media is difficult.  Each day you are bombarded with picture after picture of babies, kids, pregnancy announcements, etc.  And no matter how excited you are for the person, you still feel that tug at your heart.  You see your friend who is pregnant again announcing it with fun pictures and reveals – happiness and some jealousy.  You see the family photo of your parent’s friend and their kids with their spouses and kids – a little bit of envy.  You see the friend who struggled for years to get pregnant finally have her baby – pure happiness because you know the desire to have a baby of your own, and only a twinge of jealousy that she got it and you didn’t.

I think back to the days when my parents were expecting my brother and I.  Friends didn’t post their news on the web.  They didn’t have cute little reveals or parties to announce the pregnancy or the gender.  You didn’t see photo after photo of the kids doing everything from the first bath to the first grade throughout your day.  It was much easier (or so I think it may have been) to kind of ignore all the baby hoopla.  You dealt with it when the baby shower invitation came or the birth announcement.  Holiday parties and block parties you could see the kids, or running into them at the mall.  Maybe a birthday invitation here and there, but only for the first couple of years since you had no children of your own (I think that is pretty consistent in this era too).  Avoidance was much easier.

But on the flip side, the social media bombardment can also be a blessing.  You CAN SEE all the stages from the first bath to first grade.  You can revel in the happiness of it, even if you can’t experience it with your own children.  You get to watch the children grow up and become young adults right before your eyes.  You can see all the moments that you would have missed otherwise and will never get with your own children.  Instead of only having one or two babies you now have a classroom full.  Each friend’s child is like your own.  And while it may bring some envy and jealousy to your heart, deep down you know that this is almost as good as having your own child, and it comes with out the stresses of parenting and raising kids…or dirty diapers!

(Step)Parenting with CF

By Amy Braid

When I was younger I always dreamed of having a family.  Dinner would be on the table every night even though I worked full time.  My husband would help the kids with homework and projects after working all day too.  We would be the “perfect” American family.  Just like all those 50s and 60s TV shows that we loved and grew up with.

Then I grew up…My family didn’t form the way I envisioned it would.  I married a man with two kids.  I inherited them and all that comes with them – minus bio-mom drama.  I was thrown into the mix when they were 7 and 13.  Now they are 14 and 20.  The 20 year old has never lived with us full time, only weekends.  The 14 year old lives with us full time and calls me mom.  Long story and nothing I can share here, sorry folks.  Anyway, being the parent of a teen is rough, being the parent of a teen who is not yours is rough, maybe even more so?  I struggle every day with decisions.  Are these the right ones to make?  Am I only making this choice because I didn’t give birth to her? Would these little things not bother me if she was my blood?  Will I ever feel like she is “mine?”

Like I said, the stress of dealing with a teen is massive, but stress is horrible on the body.  And then there is the whole getting into a groove and wham hospital time!  Two weeks to screw up your well-oiled almost functioning great machine of a household.  It really does complicate things!  You have a great schedule down, things are running smooth.  Projects are getting done, homework is completed, and grades are decent.  Then the cold hits, probably brought home from school.  It travels to your chest and the next thing you know it is time for some IV antibiotics and a two week stay in your local club med.  Sure you get waited on hand and foot, and there is no laundry or dishes to be done.  You can watch TV all day and not feel like you should be doing chores.  It is almost like a mini vacation. Almost.

Every day you are still checking on homework via texts.  Asking if there are projects that need to be done.  Or coordinating extracurricular activities.  Or making sure that going out with friends on the weekends doesn’t mean that no homework and studying gets done.  Making sure chores are still being completed and allowances are still being paid.  Because though your husband is capable of doing all this, he isn’t used to it.  You are the “homework hounder” and without you things tend to get forgotten.

So that little mini vacation is no more.  You are now worrying about what you are missing at home and if things are going to be a mess when you get out.  That well-oiled machine is starting to stick and make noises.  And once you get back out and start oiling it again, it takes a few weeks if not longer to almost be back to normal.  Until the next time you need to go away.

My Gluten Free Experiment Results

By Amy Braid

As I mentioned last month, I read Wheat Belly by William Davis MD and decided to go gluten free for 30 days.  Well my 30 days is up…

I felt no significant difference eating gluten vs not eating gluten.  I did eat a lot more fruits and vegetables and yogurt which I loved.  And I was hungry a lot more too.  But I was eating lots more quantity.  The first week or two I did feel less bloated after eating, and my wrist problems seemed to be diminishing.  But I can’t say that for certain since I was not using it as much as I normally do either.  By the time I hit the two week mark I felt exactly how I did before I started.

One thing that did change significantly…my fasting blood sugars.  They were all in the normal range for those 30 days.  But my post exercise blood sugars were awful.  I crashed every single day I exercised, and that was 4-5 days a week.  Not good.

I only cheated once.  Hand to God I swear.  It was the last week.  We were going to my mother in laws for dinner, and since I make fresh bread a lot this time of year and , I made some the night before.  I had to try a bite when it was finished!  Just a small bite, and I didn’t have any at dinner the next day.  And to be honest I didn’t feel anything negative side effects from sneaking a piece.

So for me I don’t think gluten has any noticeable impact on me.  I was a little disappointed, I won’t lie.  I did hope my lungs would feel better and my wrist would feel amazing and I would not bloat like a balloon with meals.  The first 10 days or so I was excited that I might get there.  But in the end, nothing.  So it is back to gluten for me.  But modified, I will eat less, avoid all the snacks and processed foods (for the most part) and try to maintain the healthy fruits and veggies I was eating for that month.

All in all I don’t think this experiment was a total bust.  It was a learning experience and I tried some new foods I didn’t think I would like, and ended up loving them.  So win win for me!

Organizing all the CF “stuff”

Like many of our readers, I have an abundance of CF stuff.  Between IV supplies, inhaled medications, tubing for nebulizers, nebulizers for home and travel, neb cups, oral medications and diabetic supplies I feel like I live in a hospital.  And since organizing all of the “junk” we have can be overwhelming I decided to share what I do.  This does not mean that I think my system is great, perfect or Continue reading Organizing all the CF “stuff”