Symdeko update/MRI results

I started Symdeko April 19th.  It started to affect my mood (depression and anxiety), my hair has been shedding and giving me slight acne.  I decided to stop taking Symdeko mainly due to the depression and anxiety issue.  I have not felt like myself in awhile.  I made the decision to stop the Symdeko and the Effexor and find another antidepressant that will hopefully work better for me.  Now I’m thinking maybe I should have just stopped the Symdeko, but I didn’t think it was causing any issues until I realized that was the only new thing.  Now that I’m off of the Effexor I will try my best not to go back on it if at all possible since it was so hard to come off of it. Continue reading

IVs it is

When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs.  Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs.  With my line of drugs that don’t work I’m limited.  Well I had to call them back because my cough and wheeze were still hanging around.  I asked only for a short burst of prednisone hoping it would help.  You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased.  I went for lung functions and they were down a little (FEV1 34%/.98L).  When compared to my last set of lung functions they are down 4%. Continue reading

Depression really sucks

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

Change on the horizon…hopefully good

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

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