Weight loss with Mito and CF

I have decided to be more diligent with my blogging, or at least I am going to try to be. I should post more often to raise awareness on issues near and dear to my heart.

This week is mitochondrial disease awareness week and I have been flooding my page with tid bits about having a mitochondrial disease. I have two genetic diseases both are progressive and neither have a cure. Both are/have been considered childhood diseases. (Cystic Fibrosis and Mitochondrial Disease) Obviously since I am 37 they are not. I was sick a lot as a kid, and was labeled fat and lazy. So when I turned 21 and they diagnosed me I was so happy to know why I was fat and lazy (and sick).

The problem?

I can’t change the fat or lazy part. Because of my Mito I don’t absorb vitamins and minerals correctly, and my CF totally compounds this issue. I take enzymes when I eat, avoid milk products (except for cheese, I LOVE cheese), take vitamin supplements, I get vitamins and minerals twice a week. I am still low. The past few months I have really been struggling with carotene, vitamin A and D. They are just consistently low all of the time it seems. At IVs I get blood work every week to monitor my levels. My cholesterol is really low too, but that is nothing new either. You would think that I would be losing weight through all this, but I’m not. I have been around the same weight for years, it seems. The mito causes me to have muscle cramping, nerve and joint pain; so exercising is not an option for me. I’d like to try to get to the pool more often but the Y costs money and I just don’t have that right now. Plus I eat whatever I crave, my doctors told me to; the thought process is that if I crave it my body needs it. My CF doc is happy with my weight and my mito doc hasn’t said anything about it, so I assume it’s a non issue for them. It is something I think about often though. Some days I am so bloated none of my clothing looks right and some days everything is a size too big, and my pants just fall right off. I exercise when I can but honestly, that is not often and not on a regular basis. I try to not focus on it, but it is hard. I used to go on all sorts of crash diets as a teen t try to fit in, but when y daughter was born everything changed. No more crash diets. I eat healthy, but sometimes I over eat the healthy stuff and without exercise I can’t lose. But I have learned to be happy in my own skin, plus being “chubby” seems to work for my health right now.

Both my illnesses have shaped my personality and me physically. They have both left a permanent mark, like a tattoo, on my soul. It will never go away, and I am ok with that.


For more info on Mitochondrial Disease go to UMDF.og

For more info on Cystic Fibrosis got to CFF.org

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.