I finally made my next CF clinic visit, and yes I know it is long over do. I was supposed to go in February but I never made the appointment. Life got crazy. Last visit I was at 74% so I am curious to see where I’m at right now.
Today was a rough day. Despite my medicines my pain just got the best of me today, and honestly this is the second day this week where I was absolutely exhausted. I have my ups and downs throughout every day. Some days my pain gets to a 10 some days it is as low as a 3. My fatigue works the same way. Today was easily a 9 for pain; fatigue was a tad better – 7ish. Doesn’t really help my mood at all. I have been snapping at people left and right. I’m on edge, and when I’m not I’m depressed.
It is so frustrating to only be comfortable for a short time and then feel like bugs are crawling on my legs or even wore the burning. My husband and daughter see me struggle with this often, and I am ashamed that I cannot hide it very well anymore. But that’s just my own insecurities. I’ll dig myself out of this funk…
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Friday, July 18, 2014
Wednesday, May 14, 2014
College
I apologize for my lack of postings lately! My daughter is graduating and has been accepted to the Art Institute of Pittsburgh! I am so proud! She is an amazing young woman, and she deserves the opportunity to follow her dreams.
Senior year is hard. I know it has been tough on Kate, but man, it's been tough on my husband and I also. Not only is the fact that she is leaving tough, but we have been trying to help her pull everything together but we are attempting to fill our last summer together with fun times and memories!
Some of you might not understand the close relationship my husband and I have with Kate. It has always been the three of us against the world. We've had each others backs and those thing are not going to change. When Kate was younger her birthmother picked her up and did not bring her home. This was right before her 3rd birthday, and we fought to get her home. With out making this a long a drawn out story - she came home and the three of us have a bond now that I am not sure others full comprehend. We tell each other everything, there are no secrets between the 3 of us, we take care of each other and have been through a lot of crap and have come out stronger for it.
We get the, "been there done that", "as soon as mine is 18 she/he is outta here", or a look of shock. Having two genetic, progressive diseases (neither with a cure) helped us build a very strong foundation add to that the struggles caused by her birthmother and my husbands struggles with his own health and it is unshakable.
She won a scholarship, which is going to help out a lot, but we still have a lot of costs to cover. I created a page, http://www.gofundme.com/79ih34, in hopes to raise some more money for her to start classes and buy materials. Please visit and read her story and her progress so far. Donate if you can, please. She is a generous person with a great heart with an old soul, she makes the honor roll with distinction every term, she has a great sense of humor and she takes care of her family.
Senior year is hard. I know it has been tough on Kate, but man, it's been tough on my husband and I also. Not only is the fact that she is leaving tough, but we have been trying to help her pull everything together but we are attempting to fill our last summer together with fun times and memories!
Some of you might not understand the close relationship my husband and I have with Kate. It has always been the three of us against the world. We've had each others backs and those thing are not going to change. When Kate was younger her birthmother picked her up and did not bring her home. This was right before her 3rd birthday, and we fought to get her home. With out making this a long a drawn out story - she came home and the three of us have a bond now that I am not sure others full comprehend. We tell each other everything, there are no secrets between the 3 of us, we take care of each other and have been through a lot of crap and have come out stronger for it.
We get the, "been there done that", "as soon as mine is 18 she/he is outta here", or a look of shock. Having two genetic, progressive diseases (neither with a cure) helped us build a very strong foundation add to that the struggles caused by her birthmother and my husbands struggles with his own health and it is unshakable.
She won a scholarship, which is going to help out a lot, but we still have a lot of costs to cover. I created a page, http://www.gofundme.com/79ih34, in hopes to raise some more money for her to start classes and buy materials. Please visit and read her story and her progress so far. Donate if you can, please. She is a generous person with a great heart with an old soul, she makes the honor roll with distinction every term, she has a great sense of humor and she takes care of her family.
Tuesday, February 25, 2014
Rare Disease Day
February 28, 2014 is Rare Disease Day! One in ten Americans live with a rare disease, and it's time we raise awareness for ALL of the rare diseases out there. Do you know about a rare disease? Spread the word make a post on your blog, Facebook, tweet about it - be annoying and LOUD! Make it so people have no choice but to listen to you!!!
Cystic Fibrosis is a rare disease, listed on NORD (National Organization for Rare Diseases).
https://www.rarediseases.org/
They have a list available on the website. According to NORD's page on CF,
"Cystic fibrosis is a genetic disorder that often affects multiple organ systems of the body. Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs)or externally (e.g., sweat glands). In cystic fibrosis, these secretions become
abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection. The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another. Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result
in poor growth and poor nutrition; and obstruction of the intestines. Cystic fibrosis is slowly progressive and often causes chronic lung damage, which eventually results in life-threatening complications. Because of improved treatments and new treatment options, the outlook and overall quality of life of individuals with cystic fibrosis has improved and nearly 50 percent of individuals with the disorder are adults. Cystic fibrosis is caused by mutations to the cystic fibrosis transmembrane conductance regulator (CFTR) gene and is inherited as an autosomal recessive trait."
I challenge EVERYONE reading this blog to go to their site, and look at their list find something out about rare diseases.
What makes a disease rare?
A disease which affects less than 200,000 people is what constitutes a rare disease in America. The National Institutes of Health says that there are 6,800 of these diseases, which means together they affect approximately 30 million people.
There are pages on Facebook that you can "like" that have info that you can easily share about Rare Disease Day. I'll share a few links below:
What is a rare disease video
https://www.youtube.com/watch?v=MBwCcVGFODs&feature=c4-overview-vl&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X
What is it like to have a rare disease video
https://www.youtube.com/watch?v=_aMyqn88SEk&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X
Info
http://rarediseaseday.us/take-action-now/press-kit/
Also on Facebook look up:
Rare Disease Day US - https://www.facebook.com/RareDiseaseDay.US
the Global Genes Project - https://www.facebook.com/globalgenesproject
NORD - https://www.facebook.com/NationalOrganizationforRareDisorders
Cystic Fibrosis is a rare disease, listed on NORD (National Organization for Rare Diseases).
https://www.rarediseases.org/
They have a list available on the website. According to NORD's page on CF,
"Cystic fibrosis is a genetic disorder that often affects multiple organ systems of the body. Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs)or externally (e.g., sweat glands). In cystic fibrosis, these secretions become
abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection. The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another. Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result
in poor growth and poor nutrition; and obstruction of the intestines. Cystic fibrosis is slowly progressive and often causes chronic lung damage, which eventually results in life-threatening complications. Because of improved treatments and new treatment options, the outlook and overall quality of life of individuals with cystic fibrosis has improved and nearly 50 percent of individuals with the disorder are adults. Cystic fibrosis is caused by mutations to the cystic fibrosis transmembrane conductance regulator (CFTR) gene and is inherited as an autosomal recessive trait."
I challenge EVERYONE reading this blog to go to their site, and look at their list find something out about rare diseases.
What makes a disease rare?
A disease which affects less than 200,000 people is what constitutes a rare disease in America. The National Institutes of Health says that there are 6,800 of these diseases, which means together they affect approximately 30 million people.
There are pages on Facebook that you can "like" that have info that you can easily share about Rare Disease Day. I'll share a few links below:
What is a rare disease video
https://www.youtube.com/watch?v=MBwCcVGFODs&feature=c4-overview-vl&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X
What is it like to have a rare disease video
https://www.youtube.com/watch?v=_aMyqn88SEk&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X
Info
http://rarediseaseday.us/take-action-now/press-kit/
Also on Facebook look up:
Rare Disease Day US - https://www.facebook.com/RareDiseaseDay.US
the Global Genes Project - https://www.facebook.com/globalgenesproject
NORD - https://www.facebook.com/NationalOrganizationforRareDisorders
Friday, January 10, 2014
It does exist!
Yes, mitochondrial disease is real. How do I know and doctors at Boston’s Children’s Hospital don’t?
I’m glad you asked.
Every day I wake up and I lay in bed assessing my energy levels for the day. It doesn’t help every time I take it easy the night before. I’m like a cell phone battery. You know the ones that keep a charge for 5 hours one day and 2 the next. Anyhow, I assess my energy levels. I have to decide if I’m able to get out of bed and get dressed. Most days I come down stairs in my robe, and my husband brings me clothes and helps me put them on. Then when I get down stairs I have to decide to I eat breakfast and risk being in the bathroom all afternoon? If I eat I will be using energy to digest my food, and if everything goes well I may have energy to go out and do something. Yep. That’s right eating is hard. Digesting takes energy.
Next I take all my meds and do my neb treatments. I’m usually sitting at the computer for this and able to hop on line to facebook to do a quick check in on family and friends. Once I’m done, I get up and walk back to the couch. Do I sit and watch TV or do I take a nap?
If I don’t take a nap, and decide to help my husband with grocery shopping my night is planned for me. When we go I have to get a cart to push. If I sit in the wheel chair for the whole time my upper legs and thighs will hurt. But if I’m up and walking my lower legs and feet will hurt. Both ways cause my hips to scream at me…
But I WANT to go out. I WANT to be active. I WANT to breathe fresh air. Sometimes my body cooperates, but others not so much.
I think about these things, and I make choices everyday; that is how I know it is real.
I live it.
I hurt.
I’m tired.
I’m confused.
I’m uncoordinated.
People with mito are not “imaginary” we are VERY REAL and we NEED you to help us.
UMDF.org or Mitoaction.org
I’m glad you asked.
Every day I wake up and I lay in bed assessing my energy levels for the day. It doesn’t help every time I take it easy the night before. I’m like a cell phone battery. You know the ones that keep a charge for 5 hours one day and 2 the next. Anyhow, I assess my energy levels. I have to decide if I’m able to get out of bed and get dressed. Most days I come down stairs in my robe, and my husband brings me clothes and helps me put them on. Then when I get down stairs I have to decide to I eat breakfast and risk being in the bathroom all afternoon? If I eat I will be using energy to digest my food, and if everything goes well I may have energy to go out and do something. Yep. That’s right eating is hard. Digesting takes energy.
Next I take all my meds and do my neb treatments. I’m usually sitting at the computer for this and able to hop on line to facebook to do a quick check in on family and friends. Once I’m done, I get up and walk back to the couch. Do I sit and watch TV or do I take a nap?
If I don’t take a nap, and decide to help my husband with grocery shopping my night is planned for me. When we go I have to get a cart to push. If I sit in the wheel chair for the whole time my upper legs and thighs will hurt. But if I’m up and walking my lower legs and feet will hurt. Both ways cause my hips to scream at me…
But I WANT to go out. I WANT to be active. I WANT to breathe fresh air. Sometimes my body cooperates, but others not so much.
I think about these things, and I make choices everyday; that is how I know it is real.
I live it.
I hurt.
I’m tired.
I’m confused.
I’m uncoordinated.
People with mito are not “imaginary” we are VERY REAL and we NEED you to help us.
UMDF.org or Mitoaction.org
Thursday, December 5, 2013
Mutants Unite, Cystic Fibosis Survey and an update!
Hello all! I'm in a pretty good mood today, despite not feeling 100%. I've been having an even harder time than usual with coughing and wheezing. Saturday is a busy day so I am keeping my fingers crossed that I feel well enough. I'm having lunch with my best friend, Jessica, and other mom's. Jess is going to have her first child and I thought it would be nice to just get together and just support her. Later that night the cemetery my Grandmother and Grand Donald are buried in is having a candle light vigil. I'd love to be able to do both so I have been trying to take it easy this week.
We had Thanksgiving at my house and my daughter cooked dinner. A friend of hers from her culinary classes came over to help, as well as an old family friend. It was a really nice dinner with two stuffed turkey breasts and a pork crown roast, for sides we had creamed greens, green bean casserole, sweet potato puree, mashed potatoes, stuffing, gravy and cranberry chutney. It was so good! Frank's parents and my parent's were here too, which just made everything better! I love spending time with the people I love, so they day was just awesome!
I got an email a few weeks ago asking me if I could use my blog to ask for CF patients who would be willing to help out the Cystic Fibrosis Foundation by answering a few questions. Specifically adults with CF. They are conducting online discussion groups and interviews with adults to learn more about what we need and how they can better serve our needs. Will you sign up to participate? Cut and paste the following link:
http://dimensions.edgeresearch.com/e.asp?p=CFF1301&S=C&ps1=c
Oh and I have to show my husbands latest tee shirt designs!! When I was first diagnosed with CF and mito we joked with my doctors about me being a mutant, maybe possibly I'd be able to join the X-Men. LOL Flash forward to this month my husband has designed tee shirts inspired by me and that discussion so long ago. I know I'm not the only one to call myself that, so I wanted to share his work! He has designed a mitochondrial mutant shirt
You can buy it on teepublic.com https://teepublic.com/show/8056-mitochondrial-mutant-in-black
or get it as a hoodie on redbubble.com at http://www.redbubble.com/people/cfdunbar/works/11166939-mitochondrial-mutant
The next shirt is inspired by cystic fibrosis
This one is also available on teepublic.com https://teepublic.com/show/8051-respiratory-mutant-in-black
or as a hoodie on redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166952-respiratory-mutant?ref=work_main_nav
Later we discovered that I also had a blood clotting issue, so the next shirt is inspired it
Again this is available as a tee shirt at teepublic.com https://teepublic.com/show/8060-blood-mutant-in-black
or as a hoodie at redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166972-blood-mutant
Follow my blog with Bloglovin
We had Thanksgiving at my house and my daughter cooked dinner. A friend of hers from her culinary classes came over to help, as well as an old family friend. It was a really nice dinner with two stuffed turkey breasts and a pork crown roast, for sides we had creamed greens, green bean casserole, sweet potato puree, mashed potatoes, stuffing, gravy and cranberry chutney. It was so good! Frank's parents and my parent's were here too, which just made everything better! I love spending time with the people I love, so they day was just awesome!
I got an email a few weeks ago asking me if I could use my blog to ask for CF patients who would be willing to help out the Cystic Fibrosis Foundation by answering a few questions. Specifically adults with CF. They are conducting online discussion groups and interviews with adults to learn more about what we need and how they can better serve our needs. Will you sign up to participate? Cut and paste the following link:
http://dimensions.edgeresearch.com/e.asp?p=CFF1301&S=C&ps1=c
Oh and I have to show my husbands latest tee shirt designs!! When I was first diagnosed with CF and mito we joked with my doctors about me being a mutant, maybe possibly I'd be able to join the X-Men. LOL Flash forward to this month my husband has designed tee shirts inspired by me and that discussion so long ago. I know I'm not the only one to call myself that, so I wanted to share his work! He has designed a mitochondrial mutant shirt
You can buy it on teepublic.com https://teepublic.com/show/8056-mitochondrial-mutant-in-black
or get it as a hoodie on redbubble.com at http://www.redbubble.com/people/cfdunbar/works/11166939-mitochondrial-mutant
The next shirt is inspired by cystic fibrosis
This one is also available on teepublic.com https://teepublic.com/show/8051-respiratory-mutant-in-black
or as a hoodie on redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166952-respiratory-mutant?ref=work_main_nav
Later we discovered that I also had a blood clotting issue, so the next shirt is inspired it
Again this is available as a tee shirt at teepublic.com https://teepublic.com/show/8060-blood-mutant-in-black
or as a hoodie at redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166972-blood-mutant
Follow my blog with Bloglovin
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
Tuesday, October 29, 2013
The painful adventure
Last night my husband and daughter both came home exhausted. I hadn't been having a great day either, as I hadn't taken my pain medicine the day before. We just ran out, and had to wait for the cash flow to pick it up. When we went the pharmacy didn't have enough for the full script so I only got a partial. Anyhow...
We decided to go to IHOP so we could have a no effort dinner, with pancakes of course. I got an omelet covered in hollandaise, so basically a plate full of eggs and cheese. YUM! I had some problems getting in and out of the car, but our handicap tag was a big help (so we didn't have to park to far away). While eating my feet became increasingly hotter and more agitated. I got up to go to the bathroom and I thought my legs were going to explode. When we're in public I do my very best to not look like I'm having a problem, and last night I tried but failed horribly. Frank and Kate knew right away that I was getting worse, and when they remembered that I had missed my lyrica the day before they new a pain storm was beginning. A pain storm is what my husband calls it, I call it hell, but tamato/tomatoe.
I finished my dinner because I knew I was going to need a full stomach for my meds. We got home and I get inside and go right up stairs, better to do it when I'm in pain than to wait and possibly cause a flare up. So Frank and Kate helped me up the stairs and started a running a bath for me. It was loaded with Epsom salts and another bath salt mix to help relaxation. I got in the tub, with a lot of help, and the hot water and salts helped a lot. BUT the biggest help of all was my daughter Kate. After she and her dad helped me into the tub, she got a 'Choose Your Own Adventure Book' and as per the routine she red it to me while I soaked and relaxed as best as I could. This is what she does every time this kind of thing happens. Incase you're wondering...she IS amazing. Not just when I'm in pain, but all of the time. She hates it when I brag about her, so I guess its good that she doesn't read this blog. She has been cooking since she was 4, she is taking vocational culinary classes and is going to culinary school after high school. She has a 4.0 and cleans with out being asked. She is funny and has a healthy perspective on life. I know, I'm her mother and you may be thinking I'm jaded. Maybe I am.
Today has been OK so far. I still hurt, but Frank will be home to help me with lunch and Kate will be home by 4, so I have plenty to look forward to.
We decided to go to IHOP so we could have a no effort dinner, with pancakes of course. I got an omelet covered in hollandaise, so basically a plate full of eggs and cheese. YUM! I had some problems getting in and out of the car, but our handicap tag was a big help (so we didn't have to park to far away). While eating my feet became increasingly hotter and more agitated. I got up to go to the bathroom and I thought my legs were going to explode. When we're in public I do my very best to not look like I'm having a problem, and last night I tried but failed horribly. Frank and Kate knew right away that I was getting worse, and when they remembered that I had missed my lyrica the day before they new a pain storm was beginning. A pain storm is what my husband calls it, I call it hell, but tamato/tomatoe.
I finished my dinner because I knew I was going to need a full stomach for my meds. We got home and I get inside and go right up stairs, better to do it when I'm in pain than to wait and possibly cause a flare up. So Frank and Kate helped me up the stairs and started a running a bath for me. It was loaded with Epsom salts and another bath salt mix to help relaxation. I got in the tub, with a lot of help, and the hot water and salts helped a lot. BUT the biggest help of all was my daughter Kate. After she and her dad helped me into the tub, she got a 'Choose Your Own Adventure Book' and as per the routine she red it to me while I soaked and relaxed as best as I could. This is what she does every time this kind of thing happens. Incase you're wondering...she IS amazing. Not just when I'm in pain, but all of the time. She hates it when I brag about her, so I guess its good that she doesn't read this blog. She has been cooking since she was 4, she is taking vocational culinary classes and is going to culinary school after high school. She has a 4.0 and cleans with out being asked. She is funny and has a healthy perspective on life. I know, I'm her mother and you may be thinking I'm jaded. Maybe I am.
Today has been OK so far. I still hurt, but Frank will be home to help me with lunch and Kate will be home by 4, so I have plenty to look forward to.
Subscribe to:
Posts (Atom)