About Me

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

Sunday, January 30, 2011

Is that running water?

So tonight is a wrestling pay per view and we have some friends over. Kate decided to cater and made spinach balls, hot tuna dip, home made salsa, stuffed mushroom caps, chicken and cheese quesadillas. I was the sous chef and helped her prep. Everyone finished about an hour ago, and I am sitting at the computer.


Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.

So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.

Other non bathroom thoughts include:

1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...

2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.

3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.

Ok I am going to try to make it...cross your fingers for me!

Sunday, January 23, 2011

fear and death

So today, I was feeling a little down thinking about those who have passed because of CF.I did not know any of them personally but being in the same support circle; I felt as though I did-in a way.It always stings when someone passes because of CF, but so far this year 3 have passed. 3. I just think of that number and I am scared out of my mind. Sad beyond belief. And that is only 3 that I had heard about my self. I am doing well lung wise. No recent chest infections or anything. My sinuses seem to always be infected lately, but I'm used to it. My muscles are always achy here lately--but I'm used to that too. My digestive system is still wonky, but mainly because we are trying to pin point what medication and how much I need. My joints have been bothering me which is new, and alarming because I have no idea if it is my mitochondrial disease progressing or if it is just because it has been so cold lately.

Anyway--it is all just a lot. The deaths, I mean. I can deal with pain or discomfort but death breaks my heart. I believe in heaven; but my heart breaks for those who are left behind. The sorrow they'll endure...I wish no one had to deal with it.

It's part of life, I know. It's not supposed to be easy, I know that too. I suppose I just think it is unfair that these people have to watch a loved one struggle and suffer...and then have to pick up the pieces when they are gone. I don't think it is fair. I think it is because I am close to friends and family that this bothers me so. Because I know one day it will be their turn. Their turn to watch and then to have to pick up the pieces.

January 22, 1920

Up late doing school work! No worries though I have really decided that I am so lucky to get this experience, it is the best thing I have done in a while. (Not the best thing ever because that would be Kate!)

So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.

Sunday, January 2, 2011



Christmas got a little easier after my last blog entry. Maybe I just needed to get it out. Anyhow, we spent the New Years at a friends house, and she had a fondue dinner (appetizer, main and dessert) and then on the first day of the New Year we went over to spend it with our family! All in all everything has been going pretty well...except...I'm sick. Not just blah either- I'm uber bitch. My sinuses are so full my entire head feels like it might just explode if anyone else pisses me off. And that's the problem. Every little thing today seems to be annoying me. I just want to go back to bed and sleep.

I guess it all started last night, but I took some sinus meds and thought it was the cold air that was bothering me. When I woke up this morning I figured it out. My glands are swollen, my eyes are watery, etc.

I'm grumpy too, I usually do not get grumpy just cause I'm sick, but it seems like that's the case this time. I doubled up on my antibiotics, I think I have a sinus infection. Again.

Anyway- I am blogging today to wish you all a happy new year, not to complain! So I hope you all have a very happy and healthy New Year. 2010 is over, and while it was a good year for some people- it was awful for others...no matter which it was for you I hope 2011 is a good one!