Cystic Fibrosis and Infertility

Cystic fibrosis is an illness best known for causing frequent lung infections and chronic breathing problems. However, it affects organs and tissues throughout the body, including the urogenital system. Continue reading Cystic Fibrosis and Infertility

Making it Matter Ep. 18

Making it Matter Ep. 18 – Cystic Fibrosis and Long Term Relationships

Julia and I answer an email from a listener who asks about long term relationships, marriage and kids. Admittedly, neither Julia nor I are even close to that point in our lives, but we do discuss some of the things that are Continue reading Making it Matter Ep. 18

(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.

Small World by Mark Levine

I couldn’t believe it. I was walking around the pool at a resort in Mexico and I noticed a woman reading a newsletter that looked very familiar.  As the subscription manager of the CF Roundtable, I know that we send out less than 1300 copies around the world per quarter. The odds seemed slim Continue reading Small World by Mark Levine

Ask Your Questions–From Jeanie Hanley

Do you have questions for our CF Roundtable columnists?
The US Adult CF Assn (USACFA) publishes CF Roundtable. USACFA’s directors consist of all adults with CF. Some of our columnists, although not directors, make up an important part of USACFA and CF Roundtable. Continue reading Ask Your Questions–From Jeanie Hanley

Making the Move: Moving My Daughter into College

Guest Blog By Mark A. Levine
Last month we moved our daughter Brooke into college. It was quite emotional and very exciting. It was the last stage of a roller-coaster ride of a process, from campus tours to standardized testing to essays and applications. Then there was waiting to hear from schools, discussions on which one Continue reading Making the Move: Moving My Daughter into College

CF Discovery Series ™ – 2012–Parenting When You have Cystic Fibrosis!

Presented by Laura Steuer, M.A. Education, Stanford
Stanford Adult Cystic Fibrosis Advisory Council, Chairperson

When:                  Tuesday, September 11, 2012 from  6pm-8pm
                    CF patients, family members and caregivers Continue reading CF Discovery Series ™ – 2012–Parenting When You have Cystic Fibrosis!