I need new batteries...

Saturday we went to register my daughter for college classes. We got notice about the registration on Wednesday, luckily we were able to make it there (it's 4 hours away). It ended up an error, so we decided to explore the city instead. It was a good day, all in all. Sunday and Monday also went well although I was sore and really tired.

Some days I wake up feeling good, which for me means just a little fatigue. I have some level of it every day, and some days more than others. Just last week I was lucky enough to have two days in a row with energy. Last Monday I woke up with stiff joints, which sucked because it was a beautiful day out. At least it looked like it from my window. I really wanted to go out but I was too tired and had to save energy so that I could o to the grocery store. Luckily my daughter went with me, but the floor was killer on my hips and legs. Last Tuesday I had IVS and just couldn’t get myself moving but Wednesday I woke up with more energy than usual and it happened again on Thursday and Friday.

So it really does change every day, and I have no control over it. I have tried to rest up for activities, but that did not work out as I had hoped. I try to RSVP for things, but I still end up missing some of those things. Some people get upset over it (I do too) and I have friends that do not invite me places because I have canceled on the too much. It hurts my feelings but I have to remind myself that they don’t know what I deal with and no matter how hard I try to explain it, they will most likely never understand. But I’m glad they will never have to.


It’s tough for me to remember life before the pain, before the fatigue. It’s like a haze that surrounds me, every day I have a choice. I can look to the past or look to the future; I chose the future. Occasionally the past comes calling and I have a down day, I’d be lying if I said I always look on the bright side. I try to I have another blog called “The Bright Side” and a facebook page too, I’m hoping that by reminding myself to be thankful, I will be reminding others. Yeah I know I’m one of those dippy hippies. LOL

My life is unpredictable, and I have less stress about it since I accepted it. It took me a while and I still lapse every now and then; but life goes on.

French Fries fix everything...until you eat too many

So a lot has been happening in the world. Family has been sick and friends are hurting, it has been a tough year so far. Through it all, a problem has been niggling in the back of my mind. I am getting worse. I have been trying to rate my pain and fatigue every day. The fatigue has stayed the same. But the pain hasn't, the past few weeks I have not been lower than a 5. I have been taking lyrica every day, and a vicodin at least once a day (usually to help me sleep).


I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)



So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.



In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.



All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?

Wednesday? Already?

This morning I woke up congested, and spent my first two hours awake coughing, hacking and spitting. (Pretty visual- I know) Because of my mitochondrial disease this coughing will be my major activity for the day, because today I woke up with very little energy. Sunday I took Kate out shopping to pick up things she needed for Prom, and on Monday Kate and I went grocery shopping. (Because Frank was sick.) So yesterday I was pretty much useless and today I’m still feeling pretty sore. We have friends coming over this weekend and I’d like to not be in pain the whole time so I’m taking it easy for the next few days. Kate still needs some things for Prom but I think Frank is going to take her out to get them. As long as I’m not driving I should be able to go with them, but I’ll have to skip going into the store unless we take the wheel chair. (Which I hate, because people stare. Seriously. You would think that in this day and age a chick in a wheel chair wouldn’t be such a unique sight, but apparently it is. And those who don’t stare get in the way and then are annoyed when they have to move for the chair.)



After coughing everything up (thank you vest) I’m actually feeling like today is a pretty good day lung wise for me. My lung capacity is pretty good for an adult with CF (77%) but the problem is keeping it there. Because of my mitochondrial disease I have exercise intolerance, some days I might be able to do a few exercises while others there is no way I could. So for right now, I’m doing exercises to keep my muscles from getting any weaker. Exercise is important to CF patients, so the fact that I can’t do it is a real problem. Speaking of, I have to call my clinic and set up my next appointment. I’ve been forgetting, which is also mito related. My memory is terrible.



Here lately my sinuses have not been happy with the weather, so I’ve been taking extra meds to keep them in check. I’m still taking my standard antibiotics and *knocks on wood* everything seems to be going well. Tonight I’m making dinner. I picked something pretty easy with no prep work needed, a pasta casserole type thing. Its rigatoni and pepperoni with ricotta and tomato basil sauce, and I’ll have to have help getting it in and out of the oven.

I can't believe it is Wednesday already.  I feel like it should be Tuesday or maybe even Monday, so that I can get things done.