Friends and Family

What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind.  Friends and family have been on my heart and mind for a while.  The sicker that I get the more I think about them and what they may be feeling.  Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge  my CF or even remember.  It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading

CF Clinic day

I managed to get myself up and out the door for 2 doctor appointments.  I had a very hard day yesterday, emotionally and physically.  I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc.  Physical symptoms are non productive cough which sucks.  I can’t sleep for more than an hour at a time it seems.  I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Welcome back Oscar…Oral ABX are stupid!

Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading

CF Clinic, Power Port, Grief

Yesterday (5/5/16) was good ol CF clinic.  Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests.  My PFTs (lung functions were) basically the same.  My FEV1 was .93 L/ 31%.  My first 2 attempts were identical at .89 L/ 30%.  If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L.  That is based on my age, gender, height, weight and race.   Continue reading

My reality at the moment

My day starts with lots of coughing which in turns means I need to do a breathing treatment and vest session ASAP to get as much junk out as I can and to get my lungs to calm down. Usually I’m coughing quite a bit throughout the night as well. I always try to “cough it out” to avoid getting up to do a treatment, but that doesn’t always work. I haven’t had uninterrupted sleep in so long. I can’t remember when the last time was. I have just learned to sleep in spurts.  If you total the actual amount of time I am asleep at night it would be between 4-6 hours most of the time, between the coughing, possible breathing treatment to calm the coughing, bathroom breaks and tossing and turning. Continue reading

Doctor appointments GALORE!

Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on.  Of course they are not soon enough for my liking but I shall deal with it.

Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family. Continue reading