A few days ago I started having sharp pain in my left lower side at the end of my ribs. I’m pretty sure I have pulled a muscle or fractured a rib again from coughing. There’s not much you can do for either except to manage the pain. Of course coughing hurts like crazy. I’m trying to master breathing and coughing with my right side only with no luck…haha. Just kidding. I might ask for an X-ray at some point if I require more pain management. I’m trying to just deal with it but it’s annoying. Just wanted to get this into my blog for my memory, which sucks. It’s just another part of my reality. Coughing sucks.
Until next time…
Whoop Whoop!!! I made it to 39! When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing). I got a great birthday present of getting off IVs yesterday. It was a long 3 weeks of antibiotics. I am feeling pretty much the same which I will take because I am not worse. Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain. I have a clinic appointment next week. I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.
Until next time…
The above movie is coming out in March. It is about two people with CF who fall in love. The meaning behind the name of the movie is a play on what the recommendation is from the CF Foundation about staying 6 feet apart if two CF patients are together. Continue reading
I finished 3 weeks of IVs earlier this week. I do feel better than I did BUT I’m still having coughing attacks. I’m attributing it more to asthma though. I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being. I’m going to hold off and see if treatments and such can help. We all know how much I love prednisone, NOT! My lung functions were the same at FEV1 .96L/34%. My first two attempts were 33% and my last one was the 34%. I will follow-up in 6 weeks. Continue reading
I am officially off the Effexor and it has not been easy. I am experiencing what are called “brain zaps.” It is really like your brain goes “bzzz zzzz zzz.” It is very annoying and makes me want to scream. My body is sore. The commercials that say “depression hurts” are the truth. It doesn’t help right now that I am on Levaquin that causes joint and muscle pain. It’s a double whammy. Continue reading
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. Continue reading
I saw my psych doctor today to talk about my depression and anxiety. My antidepressants aren’t helping anymore. I’m on Effexor and have been for many years and it’s not working for me anymore. We are going to wean me off the Effexor and starting Trintellix (a newer med). It’s not going to be an easy time weaning off the Effexor because I have been on it so long. I pray that it is an easy transition onto the new med. I need a break through. I deserve a win in this one. Continue reading
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
I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.
The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha
Until next time…
It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading