About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Friday, March 18, 2016

I'm not me, I need a Snickers.

Sorry I haven't updated in a while, I have been unsure of what to say. I heard back about the sputum culture that I mentioned in my last post. I have 2 strains of Mycobacterium Abscessus and 1 strain of Mycobacterium Avium. My doctor explained that these are most likely contributing to my fatigue, which had been progressively getting worse. It also explained other symptoms that I was having too.

My CF doc got me in to see a doctor who specializes in these bacteria, and he in turn put me on some antibiotics. First I started Amikacin. I was on it for two and a half weeks and then I started getting migraines and a lot of sinus/ear issues so I had to stop taking it. We decided to stay on course and start the next antibiotic Azithromycin. After two weeks I started Tedozolid/Sivextro, after two weeks I stopped my Bactrim and started Ethambutol. So now I'm taking those 3 along with my other meds and nebs and my next appointment is in April. I'm still going in to get IV therapy, but because of my fatigue I'm going in every other week.

I've just been in a mood these past few months, a strange mixture of weariness, boredom, and unable to communicate well. I've been second guessing myself and generally feeling unsure about things. I went out by myself last week, grabbed some lunch and tried to shop a little but I felt uneasy. I wish I could explain it all. I want to be around the people that I love and care for, but I'm really self conscious. I don't like people seeing the 'sick' come out, and I feel like at this time in my life I'm not able to hide it very well. I guess I don't like appearing vulnerable?