Tag Archives: family

Happy birthday to me…I’m 43!!

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My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha

I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.

Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.

Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.

Until next time…

Life Update-Air Force Retirement

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I don’t write much about my family but this is a big update!  My husband is retiring from the Air Force after 20 years service today.  I can’t begin to tell you how proud I am of him and all he has done for our country and our family. 20 years of service is a great accomplishment in the Air Force, and in any military branch. He has done our country a major service that comes with a lot of stories for generations to come. Continue reading →

Update and depression talk

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I guess I should update you all since my stay in “lock up” (aka the hospital).  My creatinine (kidney level) is finally back down in normal range.  It was .91 when I last had my blood drawn at CF clinic last Thursday.  Yay for that.  Even more yay, I can start to take ibuprofen, in moderation, for my aches and pains since Tylenol does nothing for me. Continue reading →

Friends and Family

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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

Posted in Blog Life, Health update by

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

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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!

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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

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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

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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!

Posted in Blog Life, Transplant Talk by

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 →