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.

Clinic + Duck = AWESOME

I literally rolled out of bed; thankfully my legs were working this morning. I even took a shower by myself! It’s the little things. It was a very easy morning which was nice to not be stressing the appointment or the drive. Traffic was good, a little slow, but the idiot drivers weren’t out this morning. All in all it was a nice drive, and I got to spend time with my hubby so it was great. Security was busy though, but they got us through as quickly as they could. I was a little late for my PFTs but since I have a buffer between my appointments I was on time to see Dr. C.

I forgot my last PFT in February, so this whole time I’ve been thinking last October was my last PFT. So in October my FEV1 was 73%, in February it was 70%, and today was 70% too. There was a small drop in some other spots, not significant (according to Dr. C.). We discussed my new issues, drops in blood sugar, seizures, the blurry vision, etc. Nothing to report though, she said she thinks the seizures are mito related and she doesn’t seem to concerned about the sugar levels (although we have to watch them now), and the blurry vision is due to a blocked duct between my sinuses and nose. So yeah…everything went well. She is mailing my medicine, so we got home earlier than usual so we’ve been able to get some things done around the house.

Vacation is 10 days! We’re going to Duck, it is our favorite vacation spot. There is a lot to work on before we go, admittedly I'm not doing a lot but I'm getting small things done though. I'm just so excited to go, and we've got good friends going too, so it's going to be AWESOME.

Just another day...

I haven't updated recently as we have just been supper busy here. I had an NIH appointment, which went well. My FEV was 82% (up from 79%)! I got all my meds refilled and had some bloodwork done. On the muscle front things seems to be getting achey again and weak; just like before. BUT I'm just taking it one day at a time!

A few weeks ago a friend of mine had a Cystic Fibrosis Fundraiser, I was a speaker. I took the time to go over a list of people with CF who had died recently and all of their ages. It's tough when you go over the list, I started crying while reading them. Only a handful were older than me. The sad fact is that the median life expectancy is 37.4 (as of 2008). I usually don't focus on that myself; but it is always in the back of my mind. When I fundraise or try to spread awareness I always add it in and make sure people know it. I want them to know what CF is, what it does and that there is NO CURE. I just want to scream it so that people will donate money to the Cystic Fibrosis Foundation. The foundation supports a lot of research in new medications to help us have a better quality of life and the chance for a cure.

I would be lying if I didn't add in that *I* want a cure. I want to see my daughter graduate and get married... I want the people with CF that I have met online to get better (although a cure would not repair damage already done), I don't want children to suffer...

I have a whole list of other things I want; but a cure, is something patients and families want too. It's what keeps our hope alive.

life...

So since it has been a while since my last blog I'll give you the dirt on what has happened since then!

~ The adoption day came, and despite being emotional it was my husband who told a story that made everyone cry. For once...it wasn't me!!! ;o)

~ My husband and I celebrated our 11th aniversary on the 22nd of August. We went on a weekend trip to Washington DC. Kate came with us, we always celebrate our anniversary with her.

~ My brother Pete turned 28 on the 23rd! He is doing well, I think. I always worry that he isn't. I guess that's the big sister in me. We are having Pete over this coming Friday for a birthday dinner! No matter how old he gets he'll still be my little brother, even if he is taller than me!

~ Kate is getting ready to start school next week and she is really excited about it! She went school shopping with her Nana and she had to get clothing from the juniors section...my little girl isn't so little anymore!



All in all this past week has been good, I had a NIH visit last Wednesday and my PFT's went up to 82% (FEV1) They were very concerned they would continue to trend down because of my inability to exercise lately. YAY!