Day(s) of Recovery

I now understand why my mom slept all the time near the end of her life.  No I’m not saying I’m at the end, don’t worry.  She would have a good day and be able to hang and do a bunch of things then the next day she would sleep pretty much all day.  She may have even needed 2 days of recovery depending on what she had going on.  I’m sure I have written about this before but the reason I am writing about it now is because we had a double date last night for dinner and the Dan + Shay concert.  Before that I was able to go to a very good friends promotion ceremony which was about 2 hours long with the ceremony and the party after.  My busy day started at about 12pm with getting ready and we got home around 11pm.  I was so very tired when we got home that I wanted to just go to bed but that’s not possible, I have to do a breathing treatment first. Continue reading

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

Impromptu CF clinic appointment

I haven’t been feeling the greatest for over a week.  I’ve had an increased cough along with increased sputum (what I cough out in case you don’t know what that is).  I have been having trouble sleeping.  I also have been more worn out and more short of breath and needing to use my oxygen more often.  I called my CF nurse to ask for IVs and I got an appointment with the doctor instead.   Continue reading

MRI results & Transplant Clinic

I had an MRI on December 22nd and didn’t hear anything until after the holidays.  The results are that I have a minimal C6-C7 impingement (pinched nerve) in my neck.  There was nothing of significance in my upper back to give reason for my lung/chest pain on the MRI.  The lung/chest pain is most likely from pulled muscles from coughing so much and so forcefully.  I am awaiting a referral to a neurosurgeon for the pinched nerve in my neck.  I have had the pain in my neck along with headaches for about 6 months.  I’m happy to have an answer about my neck but bummed that we really don’t have any concrete answer about my lung/chest pain.  The lung/chest pain is slightly better, especially the fractured rib site, than it was when it began.  Now it seems that the rest of my muscles in my chest are sore from compensating for the pain which is no fun.  I see a neurosurgeon on a February 2nd about the pinched nerve. More on that later.
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CF clinic check up

I spent the day at the hospital with 2 different appointments.  First up was my CF clinic check up from my 21 day course of IVs.  My main complaint today was the continued pain in my right side.  My appointment was at 9:30am and I was finished at 12pm.  A lot of people complain about waiting at doctors offices.  I, on the other hand, am used to it.  It is par for the course when you have CF (or any other chronic illness).  I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn.  My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor.  I am now a professional “waiter” by this stage in my life. Continue reading

Hawaii – Mom’s happy place

We recently got back from Hawaii (Honolulu, Oahu).  The purpose for the trip was to spread my mom’s ashes in her favorite place on earth.  She wanted to be in Hawaii forever and ever.  We chose to spread her ashes in front of Duke’s restaurant on Waikiki beach, mom’s favorite restaurant.  It was a very special time but also surreal and will forever be a memory in my heart. Continue reading