About Me

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

Wednesday, August 20, 2014

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.

Friday, August 8, 2014


Sitting here and listening to the click and wer of an IV machine as I’m getting my treatments today. This morning was rough, not complaining but being truthful. I know some people have it worse than I do and I am grateful that I have as many good days as I do. The nursing staff here at the IV center are always nice to me, so I don’t mind spending 3 ½ - 4 hours a day here. Earlier this year my treatments were an all day kind of thing.
It takes a lot to get up and get ready to go out. Even on a good day I have to take breaks so that I can rest. It takes me no less than an hour to get dressed, not including the time it takes to brush my hair and teeth. Some days I have to ask my husband or daughter to brush my hair. I am unable to shower as often as I’d like. Not that anyone complains about it, but it makes me very self conscious. This week I pushed myself to attend a family event, because that is what you do for family.

You show up.

I was happy to be able to see them, and even saw family that I don’t see often. I wish I had more time with my family and friends; I spend most days on my sofa. When I wake up I usually come down stairs wearing what I wore to bed, or I manage to put on something easy. Once I get down stairs I sit down and start with my morning meds. I might be able to get up and get myself breakfast, often it’s a push to walk out to the kitchen so I just grab something easy and get back to the sofa. I take a few more meds, eat and then take the rest. Usually my husband or my daughter has made lunch for me; something I can grab out of the fridge. Again it is something easy. My life has become easy. It took the deterioration of my muscles and the progression of my disease to show me that life did not need to be hard. It doesn’t need to be full of drama or negativity.

Everyone, sick or not, wakes up in the morning with a choice. Easy or hard? Go with the flow and relax, or stress out and try to change what can’t be changed (fix what can’t be fixed). I don’t know if there is a right or wrong choice, I think everyone is different. But for me, right now I want things to be as easy as possible.