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.
You can donate to http://www.gofund.me/shannonigans or to http://www.paypal.me/shannonigans.
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
I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha Continue reading