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).
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Wednesday, November 30, 2011
Thursday, October 27, 2011
Clinging to CF
So after a discussion with my husband a few nights ago and some serious soul searching...I have come to a realization.
I've been in denial about this whole mitochondrial disease issue. I've been so focused on CF, and raising money and awareness that I have not acknowledged the other serious disease in my life. I've talked about it, sure; but I've done little to fund raise or spread awareness. (At least compared to the stuff I've done for CF)
It occurred to me with VX-770, that a pill for me might be around the corner and I got excited. I've spent a lot of time this week going over stuff I'd like to do, going back to work is one of the things on that list. But then I realized...I'm not working because I get frequent infections, I don't have the energy and my muscles cramp and ache. According to the mito information; those things can all be caused by mitochondrial disease. I knew my muscles were a result of the mito but I kept telling myself everything else could be CF related.
To clarify; I didn't delude my self because CF is less serious in anyway shape or form. I did this because I can explain cystic fibrosis. Because when I tell people I have CF and they ask, "What's that?" I can actually answer. When I tell people I have a mitochondrial disease 95% have no idea what I'm talking about. And when they as, "What is that"; I explain as best as I can a disease that my doctors don't even fully understand. People look at me like I use this as an excuse to be lazy...so I only discuss it with people who already know me and understand mito. When I meet people I don't say "Hi I'm Chrissy and I have two genetic diseases". When health comes up I usually just say I have CF and another genetic disease that is not well known. If people pry by asking what it is, I tell them it is a muscle disease. It sounds better than saying, "It is a disease in which my body doesn't produce enough energy on a day to day basis. So the symptoms can vary from person to person."
I mean typing it, it reads as a straight forward answer...I just wish it was so straight forward that people would not judge me.
I've been in denial about this whole mitochondrial disease issue. I've been so focused on CF, and raising money and awareness that I have not acknowledged the other serious disease in my life. I've talked about it, sure; but I've done little to fund raise or spread awareness. (At least compared to the stuff I've done for CF)
It occurred to me with VX-770, that a pill for me might be around the corner and I got excited. I've spent a lot of time this week going over stuff I'd like to do, going back to work is one of the things on that list. But then I realized...I'm not working because I get frequent infections, I don't have the energy and my muscles cramp and ache. According to the mito information; those things can all be caused by mitochondrial disease. I knew my muscles were a result of the mito but I kept telling myself everything else could be CF related.
To clarify; I didn't delude my self because CF is less serious in anyway shape or form. I did this because I can explain cystic fibrosis. Because when I tell people I have CF and they ask, "What's that?" I can actually answer. When I tell people I have a mitochondrial disease 95% have no idea what I'm talking about. And when they as, "What is that"; I explain as best as I can a disease that my doctors don't even fully understand. People look at me like I use this as an excuse to be lazy...so I only discuss it with people who already know me and understand mito. When I meet people I don't say "Hi I'm Chrissy and I have two genetic diseases". When health comes up I usually just say I have CF and another genetic disease that is not well known. If people pry by asking what it is, I tell them it is a muscle disease. It sounds better than saying, "It is a disease in which my body doesn't produce enough energy on a day to day basis. So the symptoms can vary from person to person."
I mean typing it, it reads as a straight forward answer...I just wish it was so straight forward that people would not judge me.
Monday, October 17, 2011
Conserving energy
I haven't blogged in a while, mostly because I haven't had the energy. Yeah...that's right. I said "energy". It takes a lot for me to sit down and organize my thoughts here. I have found myself; lately, having to pick and choose my activities a lot more carefully. Here is a list of some of those things that I have to choose between most days:
Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.
I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.
I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.
I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.
These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.
Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.
I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.
I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.
I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.
These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.
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.
Saturday, July 16, 2011
Another week come and gone...
So this week has been a busy one, but we all managed to get through it fine! Kate got sponsored for a cooking class this past week, and she got one for a class in August too. I’m so excited for her, although I think my legs might need a vacation afterwards! But seriously, Kate has this opportunity to work with an amazing chef; so I’ll do what I have to do to make sure it happens. I know moms brag about their kids but I really think I have a wonderful, talented, and awesome daughter.
Other than that I had NIH this week, and things went ok. Frank has started taking me and when he can’t my brother does. I can’t drive that far anymore. Anyhow he isn’t used to getting the run around or the, “we don’t know what to do with you speech”; so if you ask him how the appointment went it was disappointing. I guess I should feel that way too but somehow I just can’t find it in me anymore to get upset. I mean don’t get me wrong I do spend many a night crying over this whole mess that is my health, but that is out of frustration, I think. Maybe it’s disappointment too…???
So my CF doc tells me about an undiagnosed disease clinic that is at NIH, and she wants to try to get me in. I’m all for that, it seems like NIH discovered these “novel” mutations and then a few years later decided it was too much work to keep up with. At times I feel like a bug in a jar, but I must be an uninteresting bug because they don’t even seem to be watching me anymore. So while I do have hope that NIH might come through, I will not be surprised if they don’t.
I suppose I should get used to the idea that no one will ever really understand me medically speaking. It’s difficult for me to explain to people what I have because while it is a mitochondrial disease, they cannot tell me anything more specific. The only thing more frustrating; to me, than having an invisible disease is having to tell people that you have an unknown (invisible) disease.
So tonight I’m sitting online and relaxing typing this blog post and playing on face book. My sleep schedule has been thrown off. I didn’t take pain meds all week, as I was driving, so know that I’ve taken one it’s keeping me awake. Frank is up stairs drawing, but I think I’m going to sneak in and go to bed!
Other than that I had NIH this week, and things went ok. Frank has started taking me and when he can’t my brother does. I can’t drive that far anymore. Anyhow he isn’t used to getting the run around or the, “we don’t know what to do with you speech”; so if you ask him how the appointment went it was disappointing. I guess I should feel that way too but somehow I just can’t find it in me anymore to get upset. I mean don’t get me wrong I do spend many a night crying over this whole mess that is my health, but that is out of frustration, I think. Maybe it’s disappointment too…???
So my CF doc tells me about an undiagnosed disease clinic that is at NIH, and she wants to try to get me in. I’m all for that, it seems like NIH discovered these “novel” mutations and then a few years later decided it was too much work to keep up with. At times I feel like a bug in a jar, but I must be an uninteresting bug because they don’t even seem to be watching me anymore. So while I do have hope that NIH might come through, I will not be surprised if they don’t.
I suppose I should get used to the idea that no one will ever really understand me medically speaking. It’s difficult for me to explain to people what I have because while it is a mitochondrial disease, they cannot tell me anything more specific. The only thing more frustrating; to me, than having an invisible disease is having to tell people that you have an unknown (invisible) disease.
So tonight I’m sitting online and relaxing typing this blog post and playing on face book. My sleep schedule has been thrown off. I didn’t take pain meds all week, as I was driving, so know that I’ve taken one it’s keeping me awake. Frank is up stairs drawing, but I think I’m going to sneak in and go to bed!
Tuesday, July 5, 2011
The truth about batteries
Since my last blog I have been trying to be more honest, and while it is getting easier - I still find myself sugar coating things for people. Its not that they don't understand but sometimes - they don't understand the depth of it (does that make sense) Not that it something everyone understands, hell even the NIH in Bethesda doesn't understand my mitochondrial disease.
The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)
Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:
So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.
There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.
Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.
The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)
Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:
So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.
There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.
Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.
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).
Tuesday, April 12, 2011
Playing catch up...
My last entry was back in February; so I'm going to try to catch you up. I wasn't feeling well for a while. As I started to feel better my friend Chris offered Frank and I her condo in Ocean City for a week. So we decided; since we haven't been on a vacation in a while, that we were going to go! I really love the beach, a lot more than I did when I was younger. It is just a relaxing and peaceful, and our trip was wonderful. My little brother Pete went with us (as well as Kate of course) and everyone really had a great time! We came home to new living room furniture (sofa and love seat) which was nice, and then we all got sick the following week.
That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!
I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!
That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!
I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!
Thursday, February 17, 2011
Dreaming big...
Last night I laid in bed trying to sleep, but instead I was inspired to blog. Unfortunately I was too tired to get up and walk down the stairs and I knew that even if I could manage that I would not be able to go back up them. So I just laid there lost in my own thoughts.
What started me thinking?
I would have to say that Frank and I went to bed, and after getting in bed I realized my legs were itchy. Not bug bite itchy, but dry skin itchy. So Frank went down stairs to get my lotion, because he knew I couldn't make it down and back up again. So as I'm sitting there putting lotion on; I am reminded as to why I have dry skin that makes me itch. Not because it's winter, not because I take really hot showers or because of my medications; it is because my vitamins and minerals are low. It seems like every time I turn around something is reminding me that they are low. Like the cravings for tuna fish and turnip greens, and I don't mean craving as in "oh yeah that sounds good lets have that for dinner", I mean craving as in "OMG. I have to eat that right now, and if I don't get it I'm not really hungry for anything else".
I dropped my Critical Thinking class, because I can't think. Seriously, I'm forgetful and I get confused. So I decided that it would be a good idea to take a break. I have a clinic appointment next week and I'm hoping that NIH can help. I don't have health insurance so I am not able to get my IV therapy, which I really miss right now. I'd give anything to go it and be hooked up to a bag of multivitamin, trace minerals and lipids. So I'm hoping that some how my CF clinic might be able to help. I'm hoping that I can convince them to admit me for a tune up (you know you feel bad if you *want* in), but because this is all mito related who knows what they'll do. But a gal can dream, right?
What started me thinking?
I would have to say that Frank and I went to bed, and after getting in bed I realized my legs were itchy. Not bug bite itchy, but dry skin itchy. So Frank went down stairs to get my lotion, because he knew I couldn't make it down and back up again. So as I'm sitting there putting lotion on; I am reminded as to why I have dry skin that makes me itch. Not because it's winter, not because I take really hot showers or because of my medications; it is because my vitamins and minerals are low. It seems like every time I turn around something is reminding me that they are low. Like the cravings for tuna fish and turnip greens, and I don't mean craving as in "oh yeah that sounds good lets have that for dinner", I mean craving as in "OMG. I have to eat that right now, and if I don't get it I'm not really hungry for anything else".
I dropped my Critical Thinking class, because I can't think. Seriously, I'm forgetful and I get confused. So I decided that it would be a good idea to take a break. I have a clinic appointment next week and I'm hoping that NIH can help. I don't have health insurance so I am not able to get my IV therapy, which I really miss right now. I'd give anything to go it and be hooked up to a bag of multivitamin, trace minerals and lipids. So I'm hoping that some how my CF clinic might be able to help. I'm hoping that I can convince them to admit me for a tune up (you know you feel bad if you *want* in), but because this is all mito related who knows what they'll do. But a gal can dream, right?
Monday, February 7, 2011
I'm on E
So I woke up this morning absolutely wiped out, I'm not complaining about it per say; but it has become my "normal" over the past week. I really want some turnip greens and a tuna sandwich for lunch. However, I am just too tired to make anything...except maybe a bowl of cereal! I have homework for my most recent online class, and I just can not rub two brain cells together today to get it done.
You know when your car is low on gas how it's kinda sluggish on hills and sputters? That is how I feel. That's really the only way I can explain it...I can not think of any other time I've felt this way. Even when I had mono (all 4 times) I did not feel so drained. I slept a lot but now...now... I feel awake but empty (if that makes any sense).
So I was just thinking about why I want tuna and turnip greens (although I could eat spinach instead...YUM)
Tuna:
Protein, Niacin, B6, B12, selenium, magnesium, and potassium. There is more included but it isn't considered significant enough in them to list.
Turnip greens:
Protein, vitamin A, vitamin C, vitamin K, calcium, magnesium, and potassium. (to name a few)
Actually I'd really like a baby spinach salad with tuna or I'd settle for a tuna sub with baby spinach on it! LOL...
You know when your car is low on gas how it's kinda sluggish on hills and sputters? That is how I feel. That's really the only way I can explain it...I can not think of any other time I've felt this way. Even when I had mono (all 4 times) I did not feel so drained. I slept a lot but now...now... I feel awake but empty (if that makes any sense).
So I was just thinking about why I want tuna and turnip greens (although I could eat spinach instead...YUM)
Tuna:
Protein, Niacin, B6, B12, selenium, magnesium, and potassium. There is more included but it isn't considered significant enough in them to list.
Turnip greens:
Protein, vitamin A, vitamin C, vitamin K, calcium, magnesium, and potassium. (to name a few)
Actually I'd really like a baby spinach salad with tuna or I'd settle for a tuna sub with baby spinach on it! LOL...
Sunday, January 30, 2011
Is that running water?
So tonight is a wrestling pay per view and we have some friends over. Kate decided to cater and made spinach balls, hot tuna dip, home made salsa, stuffed mushroom caps, chicken and cheese quesadillas. I was the sous chef and helped her prep. Everyone finished about an hour ago, and I am sitting at the computer.
Why?
Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.
So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.
Other non bathroom thoughts include:
1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...
2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.
3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.
Ok I am going to try to make it...cross your fingers for me!
Why?
Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.
So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.
Other non bathroom thoughts include:
1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...
2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.
3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.
Ok I am going to try to make it...cross your fingers for me!
Sunday, January 23, 2011
fear and death
So today, I was feeling a little down thinking about those who have passed because of CF.I did not know any of them personally but being in the same support circle; I felt as though I did-in a way.It always stings when someone passes because of CF, but so far this year 3 have passed. 3. I just think of that number and I am scared out of my mind. Sad beyond belief. And that is only 3 that I had heard about my self. I am doing well lung wise. No recent chest infections or anything. My sinuses seem to always be infected lately, but I'm used to it. My muscles are always achy here lately--but I'm used to that too. My digestive system is still wonky, but mainly because we are trying to pin point what medication and how much I need. My joints have been bothering me which is new, and alarming because I have no idea if it is my mitochondrial disease progressing or if it is just because it has been so cold lately.
Anyway--it is all just a lot. The deaths, I mean. I can deal with pain or discomfort but death breaks my heart. I believe in heaven; but my heart breaks for those who are left behind. The sorrow they'll endure...I wish no one had to deal with it.
It's part of life, I know. It's not supposed to be easy, I know that too. I suppose I just think it is unfair that these people have to watch a loved one struggle and suffer...and then have to pick up the pieces when they are gone. I don't think it is fair. I think it is because I am close to friends and family that this bothers me so. Because I know one day it will be their turn. Their turn to watch and then to have to pick up the pieces.
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.
So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.
Sunday, January 2, 2011
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!
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!
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