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.

short update

Since my last update my beautiful daughter just turned 14. I can't believe I am old enough to have a teenage daughter! We had an awesome birthday part for her, thanks again to Fran! I had been telling Frank that I want to celebrate every year because you never know what will happen from year to year, and with my progressive mitochondrial disease I never know when I'll reach the point where I can't do it anymore. Well...I have reached that point, or I am incredably close to it. After her party I was so sore, so tired...it's been a week and I'm still feeling it.

I know there is more to being a mom than throwing birthday parties; but I still feel bad. I'm hoping that next year I will be feeling so much better that I can do it; but if not I'm sure I'll come up with something. I hate that I am not the same physically as I was last year. I mean I weigh the same, my PFT's are up a little bit (which is good) but my stamina is dwindling. It's difficult to explain I guess.

One sided chat

I haven't updated in while, life just go too crazy. It's getting back to normal so I'll have more time to update. I have been taking online classes to get my Bachelors in Health Care Administration. I only take one class at a time, mainly because I can't really sit for long periods of time. (Or stand either, like I have to shift positions a lot) This last class was a math class and let me just say...I stink at math. I forgot how bad I was at it! I was in the middle of it about a month ago but my Grandmother passed away so I dropped it and restarted a few weeks later.
I am not expecting to use the degree, although its nice to think that by some miracle I'll be able to work again. I have discovered that I love to learn. I am really enjoying being in these classes, meeting people, learning about new concepts. My favorite classes so far were religious traditions one and two; followed closely by pop culture and a few other sociology classes. I like learning what makes a society click. I like learning about what makes the individual tick also. My next class will be Anatomy and Physiology but I am most excited for my human behavior class.

Other than my brain working, not much else seems to be doing what it should! I've been pretty tired lately, but I did a clean out last week and I do feel better. My memory has improved, which is good; and my muscles haven't been hurting as bad, which is awesome. So all in all I'm doing well although I am still dreaming about my Grandmothers last breath (which I was there for) so my sleep habits aren't the best right now. I just hate sleeping and being reminded about it all, in the begining I dreamed about it a lot. I'd even wake up holding my breath, but not so much now. Now my dreams involve her being alive with a few dreams mixed in about that night. So it is getting better I suppose.

The care and feeding of this sick person

I have been depressed lately because of something that happened recently. So I decided that I needed to write a letter to my friends and family.

Dear friends and family,
This letter is for all of you; but I have two different messages, so there will be two parts. For those of you who support me by sending emails or calling me to check in...for those of you who help raise awareness about cystic fibrosis or walk with me during Great Strides...those of you who fundraise with me or on your own...and the ones who make me laugh when I feel like crying...THANK YOU. I'm not sure if I tell you guys enough; but I appreciate you and your support. It means the world to me and to Frank and Kate. Your encouraging words mean more to me than you know.

For those of you who don't know how to offer support to some one with a disease I have somethings to say. I may not understand what it is like to watch someone you care about get sick over and over, but I do understand what it is like to be that person. Because; I am that person. I need to know that my friends and family have my back. That they are thinking of me, praying for me...I don't expect you to drop everything and focus on me but that you get me. You may not get cystic fibrosis or my mitochondrial disease but that you get *me*. I don't want sympathy; I want a little bit of understanding. I'm about to say things I don't say too often...but I am scared. I'm worried about my future, I'm stressed because I feel like a burden.
I hope I don't sound whiny or needy, but I can only assume since I don't get support from some of you that it is my fault. It is not fair for me to expect you to know what I want or need. So this is me telling you.
-I enjoy spending time with you, I know that you all have busy lives and families. But a phone call or an email is always appreciated. I don't like complaining or dumping my problems on people, but I'll gladly tell you about test results or just talk about the weather. Heck, I'd love to hear about the funny thing that happened on the way to work yesterday.
-I don't want pity, just a little understanding. Have you read about CF? Mitochondrial mutations?
http://www.cff.org/AboutCF/
https://health.google.com/health/ref/Cystic+fibrosis
http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx
When I was 21 an article was written about me:
http://www.ncbi.nlm.nih.gov/pubmed/12400067
(I can even copy the full version if anyone is interested)

-I don't want you to come to the Great Strides walk with your money; I just want to see someone fighting to help cure a disease that will end my life one day. People show up just to walk with Frank, Kate and I.
-I don't want you to come over because I need anything from you, but rather because I *want* to spend time with you. Again; I am about to make reference to something that is not a secret but something that I don't like to think about...
I don't want to die wondering if you knew how I felt or "what if"; I could die before I'm 37. Only 50 percent of us make it farther than that. I know that many of you aren't worried about dying and I probably sound morbid; but the reality is that I am not the healthiest person. Not because I woke up one morning and decided I want to be sick; but because by some cosmic alignment I got CF, two mitochondrial mutations, a thyroid that doesn't work well, and blood that clots fast.

While we are on this subject, I also want to ask you a favor. When you are sick and you need someone to vent too, call me or drop me a line. I can lend a sympathetic ear or maybe give suggestions; but do not tell me that I don't understand. That I just don't get it; because you may not see me wake up in the mornings and cough my head off, many times until I vomit. But I do, You may not see me fall over or run into a wall while I'm trying to walk, and you probably don't have a clue of what is in my medicine cabinet...but trust me...this is real. It is a big deal for me, for my friends and family. Please refrain from telling my husband and daughter that they don't get it either, or that they don't have it tough because they do. More than people realize.

I'm sorry if this sounds selfish or bitchy; that is not my intention. I guess I'm hoping that by admitting to you all that this is what I need; maybe I'll get it from more people. I hope that I offer all of these things, and if I don't...tell me. I will be better.

I'm not speaking for every one with a chronic illness, just for me.

Love,
Chrissy

Just another day...

I haven't updated recently as we have just been supper busy here. I had an NIH appointment, which went well. My FEV was 82% (up from 79%)! I got all my meds refilled and had some bloodwork done. On the muscle front things seems to be getting achey again and weak; just like before. BUT I'm just taking it one day at a time!

A few weeks ago a friend of mine had a Cystic Fibrosis Fundraiser, I was a speaker. I took the time to go over a list of people with CF who had died recently and all of their ages. It's tough when you go over the list, I started crying while reading them. Only a handful were older than me. The sad fact is that the median life expectancy is 37.4 (as of 2008). I usually don't focus on that myself; but it is always in the back of my mind. When I fundraise or try to spread awareness I always add it in and make sure people know it. I want them to know what CF is, what it does and that there is NO CURE. I just want to scream it so that people will donate money to the Cystic Fibrosis Foundation. The foundation supports a lot of research in new medications to help us have a better quality of life and the chance for a cure.

I would be lying if I didn't add in that *I* want a cure. I want to see my daughter graduate and get married... I want the people with CF that I have met online to get better (although a cure would not repair damage already done), I don't want children to suffer...

I have a whole list of other things I want; but a cure, is something patients and families want too. It's what keeps our hope alive.

My Grandmother

Her name is Elsie; she was born January 22,1920. She had a stroke February 12 2007, and is paralyzed on her right side. She can not eat, she can not swallow, she can not walk, she can not talk...

She married Christian and had a son; my father Chris in January 1944. Christian died in a plane crash when my father was 11. For a year they would not pronounce him dead because they could not find his plane. My Grandmother pushed and pushed and when they finally found the plane (in a lake in Texas) she sued the pants off the airport who let the men take off with out equipment. She remarried years later; a man named Donald.

When I was a little girl, my Great Aunt Aggie moved in with my Grandmother. Aggie was having a tough time taking care of herself, so Grandmommy helpped out.

When my daughter was born, her birthday parties were at my Grandmother's house and we went trick or treating there every year. Even after her stroke we went trick or treating there. I suppose it was part of my inability to let go...

GrandDonald died last February, and she is still stuck in a nursing home. Unable to say good bye or even attend his funeral.

Today, I spoke to a lawyer. She did not want to be kept alive by tubes...so I had to find out what I need to do to help her. She is not getting better. She is in pain. She is miserable. She is dying at a snails pace...

I don't know what will happen next.

I'll be seeing you
In all the old familiar places
That this heart of mine embraces
All day through

In that small cafe
The park across the way
The childrens carosel
The chesnut trees
The wishing well

I'll be seeing you
In every lovely summers day
In everything that's light and gay
I'll always think of you that way

I'll find you in the morning sun
And when the night is new
I'll be looking at the moon
But I'll be seeing you.

http://www.youtube.com/watch?v=ZIGO6mQnLjQ

Just chillin'

So today I'm just hanging out. I got to sleep in, which was nice. I got some test results the other day and my cholesterol has gone up! Its at 99 which is the highest its been in a while (both numbers); my CK was 860, that is the lowest it has been in years! So although I am still anemic, deficient in Vitamin A, E, and D and am also low on Beta Carotene...I'm happy!
I had been feeling better muscle wise for the past week or so--but didn't know why. Now I do. I have been doing laundry, and dishes with out a problem! I have even been able to drive around with out leg cramps!

New Year!!

So it is 2010 and I've made a few resolutions this year and I thought I'd share them. Last year I wanted to get closer to my family and friends, I didn't do as well as I had wanted so I extended it! I also added to it in hopes to reconnect with people I knew way back when. This year I also made my awareness resolution, I make it every year in hopes that out of 365 days I can teach at least one person about cystic fibrosis. This year I added to my list:



-Eat healthier. By that I just mean to eat more fresh foods. Cook with fresh ingredients and to buy meat from the butcher at least once a month.



-If you ask me how I'm feeling...I'm going to be truthful. Really. I expect people to be truthful with me, so I should be truthful with them. It is only fair.



-Do what I can. For those of you who know me; you know I'm always trying to do more than I can. I usually end up in pain and many times unable to move...so this year I'm going to be better to myself.

So these are my resolutions for this year; wish me luck!