About Me

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

Thursday, November 10, 2016

November 2016

Since my last update, a lot has happened. I continued to have these reactions to my meds and now I have only been on one antibiotic for the last 5 months. I have felt better recently compared to the beginning of the year when I was on all those other medicines. I just have an appointment in October my PFTs had improved, and I'm still waiting to find out about my sputum culture. Depending on the results they may add more antibiotics, but hopefully that won't happen.

Kate has finished college,and moved back home while she gets herself together. Our roommate, moved out due to a family emergency and Kate's best friend Kearie is moving into his old room. It's a time of transition for us, that's for sure. As a country we just elected a new president, Donald Trump. I have several concerns, but my biggest is how his changes will effect my family. However, I choose to focus on my hopes for the future.

The news is reporting on all of the protests happening right now, because Trump has won. I won't say who I voted for, but I'm just hoping we can focus on the future and move forward as a country. No one wants to move backwards. I suppose we will have to see what happens.

Tuesday, July 5, 2016

Camping in Cook Forest 2016

It's been a while since my last update, I've just been so darn tired.

So in my last blog I discussed my NTM bacteria's, and my experience with Amikacin. They gave my Cipro after that, but oddly enough I had a reaction this time. I've had it before but I think the other antibiotics in my combo made it something I could not tolerate. Two weeks ago my blood work indicated that I needed a blood transfusion. My primary care doctor was out of town, and I decided to just go on my already planned vacation. I did call one of the doctors at NIH, and they suggested that I might have a tedizolid toxicity and that I stop taking it for a week and then get retested. So I went with my family; Frank, Kate, Kearie, Mary, Scott and Seth. We had a blast, it was relaxing and fun and exactly what I needed to get out of the funk I had fallen into. I'm sick of feeling sick. I haven't felt like my self in about 10 months. I had gotten depressed over it, and our vacation reminded me of some things I had forgotten. Thanks to my family, this trip was relaxing, refreshing and most of all fun.

Our car broke down on the way home and we need to buy another one. My mood is better, but I'm still not feeling so great. I put in a call to my primary doctor today, who should have me results from the last blood work by now, and hopefully a suggestion on how to help. At this point my last option is a blood transfusion, as far s I know. She may have another option, fingers crossed. I get IV therapy once a week/every other week so I know the place where I would be getting the transfusion. Additionally I have family who have had this done, but I'm always a little nervous about getting a new medicine or treatment.

In other news, my daughter is home visiting for her summer vacation! That has helped my mood too and I'm excited as we are closer to her graduating and moving home. She'll be moving back in and getting a job in the area (hopefully) and attending college in order to get the business class she needs.

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?