My previous counselor retired….insert sad Shannon. I had been seeing her for 4 and a half years. I last saw her at the end of July. Today I saw my new counselor. I really like her. I even was given homework.
My mental health is very important. When you have a life threatening genetic disease it is good to always have someone to talk to whether it’s a friend or family member you trust. I have plenty friends with CF which help a ton! They know what I am going through when it comes to CF which is great. I can bounce ideas and things off of them which is also great. With that said, having a professional person to talk to is always a good thing.
I see a psychiatrist that manages my antidepressants and anxiety meds but doing talk therapy helps in a whole other way. It helps me tremendously. You are not weak if you reach out for help. It is the strongest thing you can do for yourself.
Make sure you are taking care of yourself inside and out. If you are not feeling like yourself and you can’t seem to shake it, seek help. I am always here for you but professional help is always best.
My depression has been pretty stable even through this stupid pandemic. The anxiety is another story but I’m managing it with meds and talk therapy.
CF health update: I have been feeling pretty good. I had my yearly labs drawn along with my liver labs for the new CF med Trikafta. My vitamin D was a little elevated so I had to stop all vitamins, calcium and extra vitamin D. They will redraw my blood in 3-6 months to check my vitamin levels again. High vitamin D can cause problems with organs especially the kidneys which I have had issues with before. I was taking extra calcium and vitamin D was because of my osteoporosis diagnosis. I take Fosamax weekly for it as well. I do know that I am not having any of the side effects of high vitamin D which are nausea, vomiting, poor appetite, stomach pain, constipation and diarrhea.
I have been on Trikafta (the new CF drug) for about 10 months. My liver levels have been good every 3 months when they have been drawn. After being on Trikafta for a year I should be able to go to having labs drawn every year. There is a possibility they may want to check my levels more often since I do have nodules on my liver to make sure my liver enzymes are still maintaining. Who knows they could request a liver ultrasound at some point since that is what my transplant team does at my yearly check ups with them. I didn’t get to go to my May appointments because of COVID. I’m not sure when I will get them rescheduled. Maybe next summer when things “have calmed” down.
I think that is a good update for now. I do have a Telehealth visit for CF clinic on September 3rd. I’ll update if there is any thing to update about. haha
Until next time…
The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading
Hey all! It’s been a little while since I have updated. I have not been feeling well for a few weeks. I have been coughing more, especially at night. I went for lung functions and to give a sputum sample today. My lung function is down just a tad. My FEV1 was .95L/33%, down from 35%. That’s the amount of air that I can push out in the first second after taking in a big deep breath. Which basically means I’m using 33% of my lung capacity. Continue reading
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
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
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
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