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
Tag Archives: cf life
Caretakers
My husband and I had a conversation about being a caretaker and what it takes. It is not for the weak. There was a time right after my mom passed away where my health tanked (big surprise). All the focus was on me and my health and mental health. Trust me I would rather it wasn’t. Continue reading
CF please vanish
There are some days that I wish CF didn’t exist. Today would be one of those days. Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist. Continue reading
On a new journey…
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. 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
Progression…may as well be a curse word
(Kind of a ramble…sorry) It is day 11 of IV antibiotics. I felt horrible over Thanksgiving and the weekend. My husband was sick last Monday and Tuesday as well. We were no fun last week, that’s for sure. We had Thanksgiving lunch in our PJs and watched Netflix and football. My husband is back to his healthy self, thank goodness. When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday. We didn’t need to subject my sister, nieces and nephew to all the germs in our house. We sure missed having them here for the few days. The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon. That broke my heart. Of course, I am now thinking of when we can get a visit arranged ASAP. She said she wants to come here for her birthday. I agreed that was a great idea! Spring break in Tennessee!! Whoo hoo!!! Continue reading
Cornhole Tournament
WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading
IV update along with some ramblings
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
Waiting…
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
CF Clinic day
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 Happens 