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
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts
Friday, September 19, 2014
Wednesday, November 6, 2013
Clinic and other things...
So I had clinic on the 30th, and after not going in a year I expected to get flak from my doctor. Which I did. My PFT's were 74%, I got blood work and a sputum culture. All in all other than some shortness of breath and wheezing problems recently, I think CF wise I'm doing OK. *Knock on wood* I do have a DEXA scan and an EMG/NCV test coming up, but I expect them to go well. My primary doctor's office called in reference to labs I get for them (when I get IV's) and I some of my results are still low, despite increasing my dose. So I have some more supplements to take... YAY. More pills.
In other new, my husbands tee shirt designs are getting out there and doing well!
On Facebook - https://www.facebook.com/CfDunbarDesigns
On Twitter - https://twitter.com/CFDunbarDesigns
His designs are on:
Tee Public - https://teepublic.com/user/cfdunbar
Red Bubble - http://www.redbubble.com/people/cfdunbar/portfolio
He is actually working on two designs for me. One for cystic fibrosis and one for mitochondrial disease. I'll post the links for each on here when he gets them done. They aren't really awareness shirts, I mean you may get some questions but the idea was definitely not to fundraise. Although we will be donating a portion of his profits to each respective foundation. I don't define myself by my illnesses but I certainly feel as though they have helped to shape who I am.
Follow my blog with Bloglovin
In other new, my husbands tee shirt designs are getting out there and doing well!
On Facebook - https://www.facebook.com/CfDunbarDesigns
On Twitter - https://twitter.com/CFDunbarDesigns
His designs are on:
Tee Public - https://teepublic.com/user/cfdunbar
Red Bubble - http://www.redbubble.com/people/cfdunbar/portfolio
He is actually working on two designs for me. One for cystic fibrosis and one for mitochondrial disease. I'll post the links for each on here when he gets them done. They aren't really awareness shirts, I mean you may get some questions but the idea was definitely not to fundraise. Although we will be donating a portion of his profits to each respective foundation. I don't define myself by my illnesses but I certainly feel as though they have helped to shape who I am.
Follow my blog with Bloglovin
Wednesday, November 30, 2011
Small update...
About 3 weeks ago I started feeling awful. It came in quickly and I'm pretty sure it is the flu. I'm dismayed that I can't kick this thing. I'm extremely bothered by the fact that everyone around me seems to be paniced over this...I mean most people get a cold or a virus and it is really not a huge deal. Me? I get it and it stays around for a while. I suppose what adds to the worry is that I haven't been this sick since before I was actually diagnosed with CF at 21. So everyone is looking at this as a huge back slide for me.
I've lost my voice, still have a cough, am wheezing like a 40 year smoker and still have a fever! I have no health insurance, but I think I'm going to see my primary on Friday, although I am honestly not sure what will happen after that. I can't be admitted at our local hospital, I don't have health insurance. Then next week I have my CF clinic; where I hope they admit me. But that rarely ever turns out the way I want, so who knows what will happen. My husband is positive my PFT's have gone down, and I have a feeling he's right. My muscles are just so sore from coughing, moving even hurts. But I've been trying to maintain a level of activity and doing some breathing exercises to try to help my lung function. I'm hoping that my PFT's won't have taken a serious hit because of this, a small one I can handle (I think).
I've lost my voice, still have a cough, am wheezing like a 40 year smoker and still have a fever! I have no health insurance, but I think I'm going to see my primary on Friday, although I am honestly not sure what will happen after that. I can't be admitted at our local hospital, I don't have health insurance. Then next week I have my CF clinic; where I hope they admit me. But that rarely ever turns out the way I want, so who knows what will happen. My husband is positive my PFT's have gone down, and I have a feeling he's right. My muscles are just so sore from coughing, moving even hurts. But I've been trying to maintain a level of activity and doing some breathing exercises to try to help my lung function. I'm hoping that my PFT's won't have taken a serious hit because of this, a small one I can handle (I think).
Friday, July 29, 2011
Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition
So yesterday I read the blog of a friend:
http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html
She posed a challenge, so I will do my best to answer her questions in hopes to reveal my outlook on cystic fibrosis to any who are curious to know what I think.
"1.Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions."
I wasn't diagnosed until I was 21, so I grew up sick. Although I wasn't just a sick kid; I was the sick kid that no one believed. I would complain and get accused of being lazy; trying to get out of school or some other obligation; or selfish. My parents say that they always knew something was wrong with me, but I think with no answers from the doctors that they started to doubt themselves. When I was 16 and needed my gall bladder out; I think everyone finally realized that I was sick and when they diagnosed my with pancreatitis they knew some thing had to be wrong. But it still took 5 years for them to figure out what it was. This was, for the most part, because as a child we did not have health insurance and honestly the information out there about CF was (at that time) minimal. Everyone thought that you had to fit into specific symptoms...boy were they wrong.
When I was diagnosed I was so happy to have a name, and I foolishly thought that meant we could start to fix it. After some research and a meeting with my CF doctor, I was terrified. I mean; all of the sudden I wasn't just sick I was dying. At least that was all I could focus on.
Sure it is progressive, but we all have different rates of progression. So I feel that it is inaccurate for doctors to tell patients (or caregivers) that they have a "mild" CF. There is no such thing, there can be mild symptoms but not mild CF. At least that is the conclusion I came to after meeting others with CF online and talking with my doctor.
Do I think CF is controllable? Not really. I mean certain aspects could be, like taking medication and using your vest; but the other aspects that cannot be controlled are genetic factors and in some cases environmental factors. You could pick up a bacteria at the beach or a friends pool, but also by using a public restroom or water fountain. So unless you put yourself in a bubble there is no way to protect yourself from every factor. Additionally even if you are extra careful and your best friend comes over to visit they could be caring a bacteria they picked up (at a pool, hot tub, or by sharing a drink with someone else). Not to mention those friends and family members who still visit with a runny nose or a cough. (even if allergies is the cause you are still spreading germs and bugs; you do still have germs in your snot!)
So I think we all have to do the best that we can, but not expect an easy road just because we are compliant and/or we exercise and take really good care of ourselves. Kinda like you can't win the lottery if you don't buy a ticket; you can't avoid getting a CF bacteria unless you don't have CF. (There are just too many factors, in my opinion) But I should say that I do think we need to work on what we can, influence the factors we might had sway over (environmental) to improve the health we do have.
I think it is crazy to lay blame on another CFer for getting sicker; because it is impossible to know all of the factors. The CFer themselves may not even be aware of all of the other factors. I don't think laying blame or judging helps in any situation; but especially not when dealing with an illness.
How do I stay positive?
I still find myself in a bit of denial every now and then; I am very self conscious about being sick. That, I'm sure, is because of my childhood. So I tend to try to do as much as possible to be "normal"; but in the end that is just a fancy way of saying I do too much to attempt to make up for the extra efforts of everyone else. I hate it when people have to do more, because I can only do 50% or less. (This is one of my biggest flaws.) To stay positive I:
1. Blog. I have this blog and another one (On the bright side); this one helps me vent, and the other I use to list my many blessings in life.
2. I take pictures and I cook. They are little things I do that help me be creative.
3. I cry. I used to think it made me weak. But I find that a good cry helps me "get it off my chest."
Last but not least, I am a very spiritual person. I'm not saying that is the only way to cope, just that it is helps me to cope. I don't go to church every Sunday, but I do not think God worries about physical attendance. The thing that matters is how we treat each other, not what church we go to. But again that is only my opinion.
So that's my input! I'll pass this on to my friends who read this CF or not. Here are the "rules."
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html
She posed a challenge, so I will do my best to answer her questions in hopes to reveal my outlook on cystic fibrosis to any who are curious to know what I think.
"1.Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions."
I wasn't diagnosed until I was 21, so I grew up sick. Although I wasn't just a sick kid; I was the sick kid that no one believed. I would complain and get accused of being lazy; trying to get out of school or some other obligation; or selfish. My parents say that they always knew something was wrong with me, but I think with no answers from the doctors that they started to doubt themselves. When I was 16 and needed my gall bladder out; I think everyone finally realized that I was sick and when they diagnosed my with pancreatitis they knew some thing had to be wrong. But it still took 5 years for them to figure out what it was. This was, for the most part, because as a child we did not have health insurance and honestly the information out there about CF was (at that time) minimal. Everyone thought that you had to fit into specific symptoms...boy were they wrong.
When I was diagnosed I was so happy to have a name, and I foolishly thought that meant we could start to fix it. After some research and a meeting with my CF doctor, I was terrified. I mean; all of the sudden I wasn't just sick I was dying. At least that was all I could focus on.
Life expectancy...It took years for me to accept that I was as sick as they said, to want to fund raise, and to look beyond the dreaded "life expectancy." I had to figure out on my own, through research and joining a few CF support groups online that CF is different for everyone.
Sure it is progressive, but we all have different rates of progression. So I feel that it is inaccurate for doctors to tell patients (or caregivers) that they have a "mild" CF. There is no such thing, there can be mild symptoms but not mild CF. At least that is the conclusion I came to after meeting others with CF online and talking with my doctor.
Do I think CF is controllable? Not really. I mean certain aspects could be, like taking medication and using your vest; but the other aspects that cannot be controlled are genetic factors and in some cases environmental factors. You could pick up a bacteria at the beach or a friends pool, but also by using a public restroom or water fountain. So unless you put yourself in a bubble there is no way to protect yourself from every factor. Additionally even if you are extra careful and your best friend comes over to visit they could be caring a bacteria they picked up (at a pool, hot tub, or by sharing a drink with someone else). Not to mention those friends and family members who still visit with a runny nose or a cough. (even if allergies is the cause you are still spreading germs and bugs; you do still have germs in your snot!)
So I think we all have to do the best that we can, but not expect an easy road just because we are compliant and/or we exercise and take really good care of ourselves. Kinda like you can't win the lottery if you don't buy a ticket; you can't avoid getting a CF bacteria unless you don't have CF. (There are just too many factors, in my opinion) But I should say that I do think we need to work on what we can, influence the factors we might had sway over (environmental) to improve the health we do have.
I think it is crazy to lay blame on another CFer for getting sicker; because it is impossible to know all of the factors. The CFer themselves may not even be aware of all of the other factors. I don't think laying blame or judging helps in any situation; but especially not when dealing with an illness.
How do I stay positive?
I still find myself in a bit of denial every now and then; I am very self conscious about being sick. That, I'm sure, is because of my childhood. So I tend to try to do as much as possible to be "normal"; but in the end that is just a fancy way of saying I do too much to attempt to make up for the extra efforts of everyone else. I hate it when people have to do more, because I can only do 50% or less. (This is one of my biggest flaws.) To stay positive I:
1. Blog. I have this blog and another one (On the bright side); this one helps me vent, and the other I use to list my many blessings in life.
2. I take pictures and I cook. They are little things I do that help me be creative.
3. I cry. I used to think it made me weak. But I find that a good cry helps me "get it off my chest."
Last but not least, I am a very spiritual person. I'm not saying that is the only way to cope, just that it is helps me to cope. I don't go to church every Sunday, but I do not think God worries about physical attendance. The thing that matters is how we treat each other, not what church we go to. But again that is only my opinion.
So that's my input! I'll pass this on to my friends who read this CF or not. Here are the "rules."
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
Monday, May 23, 2011
honestly sugar coating...
Today I got to go out painting with the gals and had a good time. I have been in sort of a funk these past few days, but today cheered me up!
May is cystic fibrosis awareness month, so I decided to post random CF information on my face book page in hopes to increase awareness. I even thought that if I was honest on how I feel everyday (for the month) that maybe my family and friends who did not quite understand might understand a little better. But that task was a difficult one. I don’t usually like to post things about my health (specifically relating to me that is) because I’m usually not feeling energetic , often times my sinus’s are really causing me problems and well, most of the week my muscles hurt. Whenever I’m honest, it feels almost like I’m complaining…
So my dilemma is should I be honest or sugar coated?
Being honest ensures that there will not ever be a doubt about my health or how I feel. There will be no chance of denial from my friends or family. No chance for them to make comments about my CF being different from regular CF and no chance at any them being able to say things like, “I didn’t know she was sick” or “I had no idea she had that problem.”
Sugar coating allows me to be able to appear “normal” or “healthy” at times when I’m not. Since I have an invisible disease people can’t always tell when I feel less than 100%. I would probably still not get the support in my endeavors to cure CF or mitochondrial disease that I would like and I doubt any of them would rank it as a top 5 priority in life because after all, Chrissy doesn’t suffer too bad.
So I am thinking maybe I can mix the two?
Be honest but not blunt, be optimistic but not delusional, and be upfront be not completely open. I am usually pretty open about my health when it comes to my husband or the cysters and fibros I have met on line but for some reason I’m not able to be that open with family and friends.
So for all of my friends and family (and other people who read this blog)…
If you don’t want to really know how I feel… don’t ask. I don’t like feeling like I’m complaining, I like to be positive. But some days I just can’t be. I can’t smile as often as I would like to, I can’t do the things I used too and I’m too tired to always put up a facade. We’ll use a code; ask me how the weather is…
For those of you who do want to know I will do my best to paint an accurate picture when you ask (although it will not be a vivid picture, lol, just accurate).
May is cystic fibrosis awareness month, so I decided to post random CF information on my face book page in hopes to increase awareness. I even thought that if I was honest on how I feel everyday (for the month) that maybe my family and friends who did not quite understand might understand a little better. But that task was a difficult one. I don’t usually like to post things about my health (specifically relating to me that is) because I’m usually not feeling energetic , often times my sinus’s are really causing me problems and well, most of the week my muscles hurt. Whenever I’m honest, it feels almost like I’m complaining…
So my dilemma is should I be honest or sugar coated?
Being honest ensures that there will not ever be a doubt about my health or how I feel. There will be no chance of denial from my friends or family. No chance for them to make comments about my CF being different from regular CF and no chance at any them being able to say things like, “I didn’t know she was sick” or “I had no idea she had that problem.”
Sugar coating allows me to be able to appear “normal” or “healthy” at times when I’m not. Since I have an invisible disease people can’t always tell when I feel less than 100%. I would probably still not get the support in my endeavors to cure CF or mitochondrial disease that I would like and I doubt any of them would rank it as a top 5 priority in life because after all, Chrissy doesn’t suffer too bad.
So I am thinking maybe I can mix the two?
Be honest but not blunt, be optimistic but not delusional, and be upfront be not completely open. I am usually pretty open about my health when it comes to my husband or the cysters and fibros I have met on line but for some reason I’m not able to be that open with family and friends.
So for all of my friends and family (and other people who read this blog)…
If you don’t want to really know how I feel… don’t ask. I don’t like feeling like I’m complaining, I like to be positive. But some days I just can’t be. I can’t smile as often as I would like to, I can’t do the things I used too and I’m too tired to always put up a facade. We’ll use a code; ask me how the weather is…
For those of you who do want to know I will do my best to paint an accurate picture when you ask (although it will not be a vivid picture, lol, just accurate).
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.
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.
Wednesday, November 3, 2010
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.
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.
Sunday, July 18, 2010
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.
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.
Wednesday, March 17, 2010
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.
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.
Monday, November 23, 2009
Something else...
Well the title is because I just got a new diagnosis the other day (Friday). First off my doctor gave me hell (in her own way) for skipping IV therapy so much. So I explained to my primary that I have been feeling like crud. I skipped about 3 weeks and my CK went up to just over 2200; and after getting lipids for a week it was down to just over 1500. She asked what was going on so I told her all my symptoms as of late; and she said "Hmmmm". (LOL)
She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.
In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".
So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
And...
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
(http://www.dinet.org/pots_an_overview.htm)
So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)
She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.
In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".
So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
And...
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
(http://www.dinet.org/pots_an_overview.htm)
So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)
Thursday, November 5, 2009
Litany...
So I haven't blogged in a while. I'll be honest as to why...I did get some questions (Like I had asked for) but I just never felt quite up to writing/typing a whole blog. My muscles have been really sore and my joints achy too. I have had off and on fevers and just feeling less than 90%. I didn't want to get on here and complain. Well today I snapped out of my unwillingness to communicate. I hate telling people I'm sick, scared or hurt. I do it but usually not until I am pushed over an invisible line that I have drawn in the sand. Well...I'm going to try to change. I can say "I don't feel well", "I'm sore", or "I'm sick" with out counding whiney...I'm just going to have to practice at it. This entry will be my first shot.
I don't like to constantly complain because I feel like I could be doing so much worse. And honestly, complaining does not help me to feel better. However, for those who read this...I don't feel well. I'm not deathly ill or anything and I don't have H1N1 (knock on wood); its the same old same old. I am super tired, lacking energy, forgetful, achy and sad. All of these things can be attributed to my inablility to digest and absorb, except for the sad part. I am sad because I'm sick all the time (it feels like it) but mainly because I can do nothing for the people suffering around me. So I'm going to do what I can, which is pray.
Most of you know I am a spiritual person so praying is something I think I might be good at!
I have been praying for peace and healing for sometime. As a matter of fact I have a list so far it includes:
Scott's Dad, RR, Lauren and her family, Ginger and her family, my Grandmother, Chel, Deborah and her children, Jessica and her Dad, my brother Pete, Piper...and several others.
But I want to ask you who read this to give me names too, I want to gather a litany of them! I know there are people out there who need prayers, and you'll be helping me to feel somewhat useful durring this down swing of mine. So just leave a post on here whether you know me, or you just happened on my blog...whatever reason...tell me who and why. Those who have passed, those who are healthy but struggeling, anyone you think I might be able to help; if only a little bit.
I don't like to constantly complain because I feel like I could be doing so much worse. And honestly, complaining does not help me to feel better. However, for those who read this...I don't feel well. I'm not deathly ill or anything and I don't have H1N1 (knock on wood); its the same old same old. I am super tired, lacking energy, forgetful, achy and sad. All of these things can be attributed to my inablility to digest and absorb, except for the sad part. I am sad because I'm sick all the time (it feels like it) but mainly because I can do nothing for the people suffering around me. So I'm going to do what I can, which is pray.
Most of you know I am a spiritual person so praying is something I think I might be good at!
I have been praying for peace and healing for sometime. As a matter of fact I have a list so far it includes:
Scott's Dad, RR, Lauren and her family, Ginger and her family, my Grandmother, Chel, Deborah and her children, Jessica and her Dad, my brother Pete, Piper...and several others.
But I want to ask you who read this to give me names too, I want to gather a litany of them! I know there are people out there who need prayers, and you'll be helping me to feel somewhat useful durring this down swing of mine. So just leave a post on here whether you know me, or you just happened on my blog...whatever reason...tell me who and why. Those who have passed, those who are healthy but struggeling, anyone you think I might be able to help; if only a little bit.
Thursday, August 6, 2009
The cold hard truth...
So tonight I was writing an email to my Aunt Wanda to kinda give her a quick update on my family and stuff. Told her about Kate wearing a size 8 shoe, being 13 and already an inch taller than me, and the parental rights termination hearing....when I realized for the first time...
My Grandmother will not be at the adoption hearing. She won't be able to tell the judge that I am a good mom, that I have been a good mom since day 1...she'll only get to look at pictures. This is something she wanted to see so badly. She and my Grandfather. He passed away earlier this year and I came to terms with the idea that he would never see it. But I had somehow managed to *not* think about how much it meant to me that she wanted to be there; to see it.
So tonight, because this is all I can think about. Because I can't stop crying, and because I love them all I will share a secret. I know what suffering is. It's not what you think...it isn't what I thought...
My Mom's Mom, Grandma--she passed away in 1995. Pre-Kate...I know had she gotten to meet Kate she would have loved her.
My Mom's Dad, Grandfather--passed away when Kate was younger. He and Kate got along great. He started her collecting dolls and coins! Back then we had no idea how badly things would go down hill with Kate's birthmother. I had always wanted to adopt Kate, but her BM was in the picture back then...trying to be Kate's mom...just not trying very hard...
My Dad's Dad, GrandDaddy--I never met him. He died in a plan crash when my dad was a boy. I often wonder if he'd be proud of me, if he would approve of Frank...but I *know* he would have loved Kate.
My Dad's Step Father--GrandDonald--He adored Kate! He was tickled when he heard about the plan for adoption. I only wish this was done sooner for his sake...Kate was devistated when he passed. She missed a whole week of school and we just couldn't believe he was gone. Some days I forget.
My Dad's Mom, Grandmommy--The only Great Grandmother on my side that Kate got to meet. She had a massive stroke a few years ago....the adoption was going to be a surprise but we told her. We wanted her to have something to look forward to. But we know now that she is not coming home. She is paralyzed on her right side, she's unable to speak or eat...
Her husband GrandDonald passed while she was stuck in that nursing home...
You know when I found out about my CF and then about the mitochondrial mutations...when they told me the odds of making it to 4o...with my motor functions in tact...I cried and I couldn't understand why I was the sick one. Why I had to suffer...but life went on. I dealt with it. But when she had the stroke I learned what it was to truly suffer. It is watching someone you love suffer...to watch her try to move---to say something. Anything. Nothing. For the life of me I still can not figure out why this happened to her...
That is why from this night on...I will not cry for what CF or mitochondrial mutations will take from me, but for what they will take from every one I hold dear. Because I know how they feel watching me struggle.
My Grandmother will not be at the adoption hearing. She won't be able to tell the judge that I am a good mom, that I have been a good mom since day 1...she'll only get to look at pictures. This is something she wanted to see so badly. She and my Grandfather. He passed away earlier this year and I came to terms with the idea that he would never see it. But I had somehow managed to *not* think about how much it meant to me that she wanted to be there; to see it.
So tonight, because this is all I can think about. Because I can't stop crying, and because I love them all I will share a secret. I know what suffering is. It's not what you think...it isn't what I thought...
My Mom's Mom, Grandma--she passed away in 1995. Pre-Kate...I know had she gotten to meet Kate she would have loved her.
My Mom's Dad, Grandfather--passed away when Kate was younger. He and Kate got along great. He started her collecting dolls and coins! Back then we had no idea how badly things would go down hill with Kate's birthmother. I had always wanted to adopt Kate, but her BM was in the picture back then...trying to be Kate's mom...just not trying very hard...
My Dad's Dad, GrandDaddy--I never met him. He died in a plan crash when my dad was a boy. I often wonder if he'd be proud of me, if he would approve of Frank...but I *know* he would have loved Kate.
My Dad's Step Father--GrandDonald--He adored Kate! He was tickled when he heard about the plan for adoption. I only wish this was done sooner for his sake...Kate was devistated when he passed. She missed a whole week of school and we just couldn't believe he was gone. Some days I forget.
My Dad's Mom, Grandmommy--The only Great Grandmother on my side that Kate got to meet. She had a massive stroke a few years ago....the adoption was going to be a surprise but we told her. We wanted her to have something to look forward to. But we know now that she is not coming home. She is paralyzed on her right side, she's unable to speak or eat...
Her husband GrandDonald passed while she was stuck in that nursing home...
You know when I found out about my CF and then about the mitochondrial mutations...when they told me the odds of making it to 4o...with my motor functions in tact...I cried and I couldn't understand why I was the sick one. Why I had to suffer...but life went on. I dealt with it. But when she had the stroke I learned what it was to truly suffer. It is watching someone you love suffer...to watch her try to move---to say something. Anything. Nothing. For the life of me I still can not figure out why this happened to her...
That is why from this night on...I will not cry for what CF or mitochondrial mutations will take from me, but for what they will take from every one I hold dear. Because I know how they feel watching me struggle.
Wednesday, July 29, 2009
CF Firsts...
Alright, so I read two blogs that I have seen this on and thought it would be awesome to share with my friends and family!
My First . . .
Diagnosis- 21 years old. I had a positive sweat test but the doc wanted to be absolutely sure. They called with the blood test results (kinda, they wouldn't tell me over the phone) the day after my wedding.
CF Doctor- The same one since I was diagnosed, Dr. Churnick. Head of the Cystic Fibrosis Clinic in the National Institutes of Health (NIH) in Bethesda, MD
PFT- I'm pretty sure it was before my DX, when I was 16 or so. I did a lot of test in an effort to DX my muscle disease.
Nebulizer treatment- I was young...maybe 9? I was DX'd w/ chronic bronchitis and asthma as a child.
CF Sibling: None
Non-CF Sibling: Pete; my last entry was all about him!
"Clean out": My first Tune up/Clean out was right after my 30th birthday. My doctor was very happy that I made it to 30 before needing one. My PFTs had droped to 77%, they had always been in the 90's or above. It's ironic because now my base line is low 80s, high 70s...
Bad memories: Vomiting, sitting on the cold bathroom floor in tears alone, because everyone in the house was asleep. I didn't like to wake anyone up, so I sat in there alone--sometimes in the dark so I didn't wake anyone. (This actually happened several times until they figured out a had gall bladder issues/pancreatitis) My mom woke up when she heard the bath water running. It always made the pain better, or maybe it just relaxed me to be in a hot bath. I'd only be in it for 15 or 20 minutes before the pain would come back. Then I'd put my pajama's back on and my mom and dad would drive me into the hospital. They NEVER figured out what the problem was.(until I got away from my pediatric doc and started seeing someone else. She said gall bladder and sent me to the best GI in town, he was amazed I was only 15. The next time this type of thing happened my mom called him at 3 in the morning. He met us at the hospital and told them to check my amylase and lipase levels. The were so high...he stood there with his mouth open staring at me...)
Good memories: Any with my daughter in them!!!
Real Friend- When I was in kindergarten I made my first real friend (non imaginary). Carlolyn Coelho; sadly we have lost touch over the years.
Dose of Tobi- Durring my first tune up I had an IV of Tobi, but I have never had the inhaled Tobi (tobramycin)
Read: "One Fish Two Fish", as a tween it was "Are You There God, It's Me Margaret."
Started thinking about mortality: I think I always thought about it. But I started to think about my own at 15 and was fixated on it for a while.
Started realizing I'm gonna live through this chapter and then the next one too: When I was DX'd at 21, I couldn't see that but gradually afterwards I realized I could make this work. I realized I had to.
First loss: CF related it was a girl I had only made a few comments on her blog and didn't really know. Her name was Debbie, the first CF death that hit me hard...
First time I really remember FEELING sick: It is one of my first memories as a toddler. I guess I was 3 or 4 and I was laying under the Christmas Tree holding my ear. (Ear infection) I recall thinking that Santa was coming and he would made me feel better.
First hemoptysis: Not happened yet
First major bleed (later diagnosed as Pulmonary Endometriosis): None
First home IVs: Never had them, we have an IV center that my primary dr likes to send me to
First home IVs with no hospital time: None yet
First time I freaked out about my fertility: I never had a problem getting pregnant. Just one staying that way. It took 5 miscarriages for the doctors to figure out that I had a blood clotting problem as well, my blood clots too much. At that point I made the decision that with my medical history and terrible genes, and the fact that Kate needed a mother who wasn't going to come and go but one who would stay around...I had a tubal ligation.
First time as public advocate for CF Adult issues: Battle for The Cure, Amtgard. I think I was 24?
First time a relationship changed dramatically during/immediately following big changes in my health: 21, I was DX'd right after my wedding. I told him he could leave since it would only get worse and he said, " Chrissy, don't be stupid." He still tells me that!!
First time without health coverage: I didn't have it when I was a kid which could be why I was DX'd so late. Luckily I am in a life time study for adult CF patients at the NIH, so even if I loose insurance I won't loose NIH. All my meds are free, except for extras from my primary and my GI. My tune up was paid for as well.
First PICC line: Have not had one yet
The First time it hit me: 23
When I was DX'x the only part of CF I understodod was the dying part; then with no time to stop reeling from the news...they told me I had two mitochondrial mutations. After a little while it hit me that I had two progressive disease and I educated myself about them. One effected my lungs and digestive sustem and the other would more than likely take my ability to walk one day and possibly more than that.
I had a choice; I could sit around and be angry and feel sorry for myself or I could teach my daughter and others around me that no matter what the odds are you can deal. These diseases will probably take my life. I know that and I'm OK with it...but no one will say that CF beat me, or that "I lost a battle"...no way.
My First . . .
Diagnosis- 21 years old. I had a positive sweat test but the doc wanted to be absolutely sure. They called with the blood test results (kinda, they wouldn't tell me over the phone) the day after my wedding.
CF Doctor- The same one since I was diagnosed, Dr. Churnick. Head of the Cystic Fibrosis Clinic in the National Institutes of Health (NIH) in Bethesda, MD
PFT- I'm pretty sure it was before my DX, when I was 16 or so. I did a lot of test in an effort to DX my muscle disease.
Nebulizer treatment- I was young...maybe 9? I was DX'd w/ chronic bronchitis and asthma as a child.
Vest treatment- 27
Dose of Pulmozyme- 27CF Sibling: None
Non-CF Sibling: Pete; my last entry was all about him!
"Clean out": My first Tune up/Clean out was right after my 30th birthday. My doctor was very happy that I made it to 30 before needing one. My PFTs had droped to 77%, they had always been in the 90's or above. It's ironic because now my base line is low 80s, high 70s...
Bad memories: Vomiting, sitting on the cold bathroom floor in tears alone, because everyone in the house was asleep. I didn't like to wake anyone up, so I sat in there alone--sometimes in the dark so I didn't wake anyone. (This actually happened several times until they figured out a had gall bladder issues/pancreatitis) My mom woke up when she heard the bath water running. It always made the pain better, or maybe it just relaxed me to be in a hot bath. I'd only be in it for 15 or 20 minutes before the pain would come back. Then I'd put my pajama's back on and my mom and dad would drive me into the hospital. They NEVER figured out what the problem was.(until I got away from my pediatric doc and started seeing someone else. She said gall bladder and sent me to the best GI in town, he was amazed I was only 15. The next time this type of thing happened my mom called him at 3 in the morning. He met us at the hospital and told them to check my amylase and lipase levels. The were so high...he stood there with his mouth open staring at me...)
Good memories: Any with my daughter in them!!!
Real Friend- When I was in kindergarten I made my first real friend (non imaginary). Carlolyn Coelho; sadly we have lost touch over the years.
Dose of Tobi- Durring my first tune up I had an IV of Tobi, but I have never had the inhaled Tobi (tobramycin)
Read: "One Fish Two Fish", as a tween it was "Are You There God, It's Me Margaret."
Started thinking about mortality: I think I always thought about it. But I started to think about my own at 15 and was fixated on it for a while.
Started realizing I'm gonna live through this chapter and then the next one too: When I was DX'd at 21, I couldn't see that but gradually afterwards I realized I could make this work. I realized I had to.
First loss: CF related it was a girl I had only made a few comments on her blog and didn't really know. Her name was Debbie, the first CF death that hit me hard...
First time I really remember FEELING sick: It is one of my first memories as a toddler. I guess I was 3 or 4 and I was laying under the Christmas Tree holding my ear. (Ear infection) I recall thinking that Santa was coming and he would made me feel better.
First hemoptysis: Not happened yet
First major bleed (later diagnosed as Pulmonary Endometriosis): None
First home IVs: Never had them, we have an IV center that my primary dr likes to send me to
First home IVs with no hospital time: None yet
First time I freaked out about my fertility: I never had a problem getting pregnant. Just one staying that way. It took 5 miscarriages for the doctors to figure out that I had a blood clotting problem as well, my blood clots too much. At that point I made the decision that with my medical history and terrible genes, and the fact that Kate needed a mother who wasn't going to come and go but one who would stay around...I had a tubal ligation.
First time as public advocate for CF Adult issues: Battle for The Cure, Amtgard. I think I was 24?
First time a relationship changed dramatically during/immediately following big changes in my health: 21, I was DX'd right after my wedding. I told him he could leave since it would only get worse and he said, " Chrissy, don't be stupid." He still tells me that!!
First time without health coverage: I didn't have it when I was a kid which could be why I was DX'd so late. Luckily I am in a life time study for adult CF patients at the NIH, so even if I loose insurance I won't loose NIH. All my meds are free, except for extras from my primary and my GI. My tune up was paid for as well.
First PICC line: Have not had one yet
The First time it hit me: 23
When I was DX'x the only part of CF I understodod was the dying part; then with no time to stop reeling from the news...they told me I had two mitochondrial mutations. After a little while it hit me that I had two progressive disease and I educated myself about them. One effected my lungs and digestive sustem and the other would more than likely take my ability to walk one day and possibly more than that.
I had a choice; I could sit around and be angry and feel sorry for myself or I could teach my daughter and others around me that no matter what the odds are you can deal. These diseases will probably take my life. I know that and I'm OK with it...but no one will say that CF beat me, or that "I lost a battle"...no way.
Saturday, July 25, 2009
My Brother...
His name is Peter James, and he is four years younger than me. He does not have CF, he is just a carrier of the D F 508 gene. He has a few health issues of his own, but all in all he is healthy.
He is sweet and kind, he has a good heart and sense of humor. Pete is a caring guy. He works hard, and when he isn't working he is doing things for our mom and dad.
Pete worries about me a lot; although he won't tell me he does. I know it, I can see it when he looks at me and I can hear it when he talks to me. I can usually tell with most people; a talent I picked up a few years after my diagnosis. He lies about things to protect me, nothing big...all small little white lies or not telling me everything...but I can tell when he does it. Again it's a talent after years of dealing with doctors concerning my unknown mitochondrial mutation an CF. However with him I think I know because, we are connected.
I don't know if he read's my blog...but that's ok. I'm not really writing this for him, or for me. I'm writing this to tell those who read how lucky I am to have him for a brother. Sure he electrocuted me...twice; and yes he flushed my My Little Ponies hair brushes and ribbons down the toilet; no doubt he hit me over the head with a Tonka truck; and he totally hit me in the head with a wrench and a mop too. I can imagine the list of things I did in retaliation or to start the fights were just as rough! HAHA!
He is a great brother, and I could not ask for a better one. No matter what mistakes he has made or will make he will always be my little brother.
I figured that I'd blog about him today because I'm sick of blogging about me! I don't have any news anyway!!
He is sweet and kind, he has a good heart and sense of humor. Pete is a caring guy. He works hard, and when he isn't working he is doing things for our mom and dad.
Pete worries about me a lot; although he won't tell me he does. I know it, I can see it when he looks at me and I can hear it when he talks to me. I can usually tell with most people; a talent I picked up a few years after my diagnosis. He lies about things to protect me, nothing big...all small little white lies or not telling me everything...but I can tell when he does it. Again it's a talent after years of dealing with doctors concerning my unknown mitochondrial mutation an CF. However with him I think I know because, we are connected.
I don't know if he read's my blog...but that's ok. I'm not really writing this for him, or for me. I'm writing this to tell those who read how lucky I am to have him for a brother. Sure he electrocuted me...twice; and yes he flushed my My Little Ponies hair brushes and ribbons down the toilet; no doubt he hit me over the head with a Tonka truck; and he totally hit me in the head with a wrench and a mop too. I can imagine the list of things I did in retaliation or to start the fights were just as rough! HAHA!
He is a great brother, and I could not ask for a better one. No matter what mistakes he has made or will make he will always be my little brother.
I figured that I'd blog about him today because I'm sick of blogging about me! I don't have any news anyway!!
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