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
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
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
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. Continue reading
When you have a chronic illness waiting is part of life. Waiting to get better, waiting/holding steady or waiting to die. Yep, I said it. It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die. Maybe you could call it “living to die.” Whatever it may be, it is life. Continue reading
This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.
If you would like to donate we would greatly appreciated it.
Thank you to you all for all of your love and support!!
Until next time….
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