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.

2011

HAPPY NEW YEAR!

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!

The Ghost of Christmas Past

It's all most Christmas, and I took me a while to get into Christmas this year. You know, the holiday spirit. I guess you could say I've got it know, but I still feel kind of blah. All my major shopping is done, just need to pick up some stocking stuffers. But I'm still not feeling all Christmasy, I maybe feel 65% Christmasy.

I spent some time last night thinking about this past year, and I think I realized why I don't feel it. 2010 has been not nice to me, and I'm feeling a little kicked. My Grandmother passed away this year, I lost health insurance, my muscle disease has caused more problems...I could go on...but it is pointless. It won't help me feel better.

So I have been trying to get in the Christmas spirit. I've been randomly listening to carols for short blocks of time. I've been eating cookies and other holiday desserts every day (sometimes twice). I've been watching holiday movies with my family. Nothing seems to help though, and I'm running out of ideas. My last class discussed depression and I fit the bill.

After my Grandmother passed I waited for my "break down moment" you know the one where I spend a day or two sad and mopey, the one where I eat everything in the house and cry a lot. But it just hasn't happened yet. So I'm thinking this might just be the root of my depression; everything else is good...my family, my friends...yeah some other stuff happened but I don't know if it was enough to throw me off my game. Not like this.

I just cannot let my guard down enough to allow myself to get upset, I'm used to being the strong one. I keep thinking of how we would go over every year on Christmas when I was a child; and then when Kate was born we took her over every year too. We had dinner there, at least until I got married and had Christmas dinner with my husbands family and Thanksgiving dinner with mine. I remember walking in and seeing that Santa had brought me Barbie's townhouse and the year I got the cool cabbage patch with cornsilk hair. I remember when I got older sitting in her turtle back chairs and listening to Christmas Music while GrandDonald cooked dinner. Some years we would tinker on the piano before dinner was ready.

I know I'm not the only one who has lost a loved one. I know others who have passed this year as well, but I do I hope that I am the only one having a tough time. I would not with this feeling on anyone.

Of Hope and Wars

Yesterday was a beautiful fall day, and I went to Gettysburg with my mom and my brother Pete. I took a lyrica before we left and it seemed to help- although I am really sore today! It was just a great day; I got out of the house and took some good pictures. I enjoy taking them because when I look at them I can't tell that I'm sick. I know it probably sounds crazy but it's true.
Walking around the battle fields I was thinking of all of the younger people who lost their lives. This also made me think about my own mortality, and made me thankful for all of the blessings I have in life. I loose site of how lucky I am sometimes.

Then last night I got online to work on some things, and as facebook came up I saw a post about another death. This one was CF related. I haven't been to the forums a whole lot lately, and I missed how sick he had gotten. He passed last night; I did not know him--but I feel like we were kindred spirits. (I feel like that about every one with CF) Fighting the same fight, just in different ways. I had never really spoken to him; but his wife Lisa is on the CF forums I use for support. I always feel horrible when I see the impact CF has on parents, couples, friends and siblings. It breaks my heart to know that one day my loved ones may feel that same loss. And there is nothing I can do about it. Sure I can take care of myself so that it doesn't happen anytime soon--but really does it matter when you loose a loved one? I don't think so really...
I just feel horrible for the loss that Lisa has experienced and I'm sending her my love and prayers. I'm also hugging my CF family, the ones who had met him and his wife, and the ones who hadn't...and I have a message:

CF may be a tie that binds us...but everyone I have met online and off have been truly wonderful and inspiring. I'm thinking of you all today, and if I'm being honest I think of you all everyday and I'm always wishing you the best. Even if I do not say it often.

Long time no update!

So it's been a while since my last post, and honestly I think it was a good idea to take a break. I was getting sick of complaining and I'm sure those who read this were sick of reading!
So I do have some good news and some bad. The good news is that my PFTs have gone up! That was a nice surprize being that I'm not able to exercise much due to my muscles. Now the bad news. I have no health insurence. While on the CF front it makes no difference, it does for everything else. I just broke down and had my lyrica prescription called in. My cost is somewhere around $195, which is better than the $300 I was quoted earlier. But it is still not something I can afford. So I'm stuck here trying to figure out what I can do. I'll figure it out though and it will be fine. I'm going to start being optimistic again.

So my daughter started the ninth grade this year, and we got progress reports last week. She has A's in all of her classes! I am so proud of her. Also she has been cooking dinner a lot, to get expirience with different techniques and such. I'm hoping that next summer we will be able to put her in culinary camp again, I know she really likes it there!

Things are going pretty well here, and the things that aren't going well I'm working on solutions for! Life is too short for me to complain and sit around hoping things get better. It's time to get up and start doing more about it.

Angry...

So I've been in a really bad mood this weekend. I'm not sure why, there are many things this week that could have done it. Monday - Friday my daughter had a culinary camp and I drove her there every day. I was exhausted every night and am still sore from the driving. In addition to that my car broke down, I don't drive so I have been letting someone else drive it with the agreement that he would be responsible for gas and maintenance...well it's going to be a $300 - $400 fix the he can not afford. We can not afford it either. Also I was looking at some pictures of myself and I look sick. My mom showed me an obit in her local paper for a young lady with CF; and I drove my mother to work (where my Grandmother passed away).

I like to keep this picture up, you know, that things are good. Sometimes they aren't and I hate advertising it. No lectures please.

The weekend has just been blah for me. While I can list many things that happened to possibly cause I have no clue if it was one or all of them. Last weekend was my husbands 20th high school reunion; which went well, I thought. Although the walking was killer. So it is safe to say that right now...I am really exhausted. Frank and Kate have been very good about taking care of me this weekend, and I appreciate them for it. I still want to scream...Where did my health go? CF wise I am doing well
but my muscles and joints are awful. My mitochondrial disease is progressing, or at least I am developing new symptoms. Toes going numb, joints locking up, and joint pain in general are new symptoms. (started in the past few months) What sucks is that I'm not sure if or when these symptoms will get worse. And I'm just really pissed about it.