CF is not my friend today

We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading

Depression on a rainy day

Depression on a rainy day is no fun.  Depression itself is no fun to live with.  Depression on a holiday where we honor the men and women who paid the ultimate sacrifice for our country is not easy either.  Reading/hearing all the stories of the fallen heroes is hard when you are not having a good mental day.  I got teary eyed (as usual) as the XM radio’s “The Highway” played “Taps” to honor those killed in action.  This weekend has been hard one for me and I don’t really know why.   Continue reading

2017 at a glance

2017 was a rough year.  It had its ups and downs.  In January I had transplant clinic which was good.  I’m holding steady according to them.  I see them, at Barnes Jewish in St. Louis, once a year to check me out.  January also brought the 1st anniversary of my moms passing which was hard.  I still miss her every day.  The hole her death put in my heart will never be filled.  I was on IVs in February, April, May, July, August which lead to being in the hospital because of my creatinine (kidney level) being elevated again.  I had my gallbladder removed in September and did a week of IVs after surgery as a precaution.  More IVs in November and then this whole virus/bronchitis/CF exacerbation or whatever it is in December that put me in the hospital for a few days.  Man that’s a lot of IVs! Continue reading

I Remember When

I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading

Update and depression talk

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

Things I hate/miss

As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do.  With progression of CF, your independence slowly gets taken away.  It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading

Joy

Where has my joy gone? Where is the happy-go-lucky Shannon that we are all used to?  Losing my mom seems to have taken my joy away on top of my CF progressing.  I had a good cry fest over our trip to KC over Spring Break.  Maybe it was because I couldn’t see my mom while there as usual.  Maybe it’s because I’m just a wimp and got home sick within days of being in KC.  I like the comfort of home where all of my medical stuff is so I have the things I need.  Packing with all the medical stuff is a pain in rear.  The anxiety of “did I remember everything.”  I forgot one of my inhaled meds this trip, ugh.  We were gone 10 days.  I defiantly could tell a difference not having it but I made it through. Continue reading

21 days down…

IV antibiotic update:  Last Thursday (the 1st) I had my regular labs drawn.  I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2.  That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys.  We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9!  It is better to stop it before it gets to bad.  I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range.  I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading

CF Clinic Day

The first bit of news is that my dad is here to visit for a week…yay!!!  He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them.  Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha

Today was a good clinic day.  First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick.  I have been having good days and bad days as per my normal so I was curious how my appointment would go today.   Continue reading