Sitting here and listening to the click and wer of an IV machine as I’m getting my treatments today. This morning was rough, not complaining but being truthful. I know some people have it worse than I do and I am grateful that I have as many good days as I do. The nursing staff here at the IV center are always nice to me, so I don’t mind spending 3 ½ - 4 hours a day here. Earlier this year my treatments were an all day kind of thing.
It takes a lot to get up and get ready to go out. Even on a good day I have to take breaks so that I can rest. It takes me no less than an hour to get dressed, not including the time it takes to brush my hair and teeth. Some days I have to ask my husband or daughter to brush my hair. I am unable to shower as often as I’d like. Not that anyone complains about it, but it makes me very self conscious. This week I pushed myself to attend a family event, because that is what you do for family.
You show up.
I was happy to be able to see them, and even saw family that I don’t see often. I wish I had more time with my family and friends; I spend most days on my sofa. When I wake up I usually come down stairs wearing what I wore to bed, or I manage to put on something easy. Once I get down stairs I sit down and start with my morning meds. I might be able to get up and get myself breakfast, often it’s a push to walk out to the kitchen so I just grab something easy and get back to the sofa. I take a few more meds, eat and then take the rest. Usually my husband or my daughter has made lunch for me; something I can grab out of the fridge. Again it is something easy. My life has become easy. It took the deterioration of my muscles and the progression of my disease to show me that life did not need to be hard. It doesn’t need to be full of drama or negativity.
Everyone, sick or not, wakes up in the morning with a choice. Easy or hard? Go with the flow and relax, or stress out and try to change what can’t be changed (fix what can’t be fixed). I don’t know if there is a right or wrong choice, I think everyone is different. But for me, right now I want things to be as easy as possible.
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Friday, August 8, 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.
Sunday, March 17, 2013
French Fries fix everything...until you eat too many
So a lot has been happening in the world. Family has been sick and friends are hurting, it has been a tough year so far. Through it all, a problem has been niggling in the back of my mind. I am getting worse. I have been trying to rate my pain and fatigue every day. The fatigue has stayed the same. But the pain hasn't, the past few weeks I have not been lower than a 5. I have been taking lyrica every day, and a vicodin at least once a day (usually to help me sleep).
I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)
So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.
In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.
All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?
I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)
So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.
In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.
All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?
Friday, June 8, 2012
Duck!
I had NIH this past Wednesday, and tomorrow the fam and I are headed on vacation. I am so excited! NIH went well, I got lectured about doing my treatments and I have a sinus infection (again). But my Lung Function is 82%!
The lecture came about because after speaking with my doctor she had said that if I missed a treatment or two not to worry, because my lungs were sounding clear. Well, I twisted that to mean that I did not have to use them if I was feeling ok. Stupid, I know. I’m trying to get back on track with them. She had me double up on my antibiotics for the next 2 weeks, because of the sinus infection. I had a fever when I went in and I have been having some nasty plugs from my sinuses.
As far as my mitochondrial disease is concerned my CF doc is still trying to get someone to take notice and treat me. Hell, I’d be glad if they’d just studied me. Just so someone else could watch what’s happening and hopefully figure out why and how it’s happening. I understand there is no cure and that it is progressive…but there has to be some kind of treatment. Even if it’s just to help me sleep. I have such a hard time getting comfortable enough to fall asleep.
On to the best news…
Tomorrow we are going on vacation for a week! We are going to Duck, NC and I am so excited. We are going with our friends Chris and Damon and their kids (Alexander and Devin). The beach house is close to the beach, so I won’t have to walk far to get there. Frank was saying he might even drive me as close as he can so that I can save spoons (energy). I just can’t wait to be able to watch the sun rise, and feel the energy. I know it might sound weird but I feel as if the beach is sacred. It is a place where the energy of the land meets the energy of the ocean and I just feel closer to Nature. And for those who don’t know my beliefs…I feel that God and Nature are synonymous. (I also say I feel, rather than I believe because the truth is, I do feel it.)
I am taking a camera to catch as many memories as I can! There is internet access there and despite my want to be active, I’ll probably get online and maybe even post some pictures of my Facebook page. I’d love to go out every day, but I know I won’t! The house has a deck so I’ll probably spend a lot of time sitting out on it, breathing in the salty air and just being closer to my family and God. Nothing could be better.
The lecture came about because after speaking with my doctor she had said that if I missed a treatment or two not to worry, because my lungs were sounding clear. Well, I twisted that to mean that I did not have to use them if I was feeling ok. Stupid, I know. I’m trying to get back on track with them. She had me double up on my antibiotics for the next 2 weeks, because of the sinus infection. I had a fever when I went in and I have been having some nasty plugs from my sinuses.
As far as my mitochondrial disease is concerned my CF doc is still trying to get someone to take notice and treat me. Hell, I’d be glad if they’d just studied me. Just so someone else could watch what’s happening and hopefully figure out why and how it’s happening. I understand there is no cure and that it is progressive…but there has to be some kind of treatment. Even if it’s just to help me sleep. I have such a hard time getting comfortable enough to fall asleep.
On to the best news…
Tomorrow we are going on vacation for a week! We are going to Duck, NC and I am so excited. We are going with our friends Chris and Damon and their kids (Alexander and Devin). The beach house is close to the beach, so I won’t have to walk far to get there. Frank was saying he might even drive me as close as he can so that I can save spoons (energy). I just can’t wait to be able to watch the sun rise, and feel the energy. I know it might sound weird but I feel as if the beach is sacred. It is a place where the energy of the land meets the energy of the ocean and I just feel closer to Nature. And for those who don’t know my beliefs…I feel that God and Nature are synonymous. (I also say I feel, rather than I believe because the truth is, I do feel it.)
I am taking a camera to catch as many memories as I can! There is internet access there and despite my want to be active, I’ll probably get online and maybe even post some pictures of my Facebook page. I’d love to go out every day, but I know I won’t! The house has a deck so I’ll probably spend a lot of time sitting out on it, breathing in the salty air and just being closer to my family and God. Nothing could be better.
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.
Friday, March 26, 2010
The care and feeding of this sick person
I have been depressed lately because of something that happened recently. So I decided that I needed to write a letter to my friends and family.
Dear friends and family,
This letter is for all of you; but I have two different messages, so there will be two parts. For those of you who support me by sending emails or calling me to check in...for those of you who help raise awareness about cystic fibrosis or walk with me during Great Strides...those of you who fundraise with me or on your own...and the ones who make me laugh when I feel like crying...THANK YOU. I'm not sure if I tell you guys enough; but I appreciate you and your support. It means the world to me and to Frank and Kate. Your encouraging words mean more to me than you know.
For those of you who don't know how to offer support to some one with a disease I have somethings to say. I may not understand what it is like to watch someone you care about get sick over and over, but I do understand what it is like to be that person. Because; I am that person. I need to know that my friends and family have my back. That they are thinking of me, praying for me...I don't expect you to drop everything and focus on me but that you get me. You may not get cystic fibrosis or my mitochondrial disease but that you get *me*. I don't want sympathy; I want a little bit of understanding. I'm about to say things I don't say too often...but I am scared. I'm worried about my future, I'm stressed because I feel like a burden.
I hope I don't sound whiny or needy, but I can only assume since I don't get support from some of you that it is my fault. It is not fair for me to expect you to know what I want or need. So this is me telling you.
-I enjoy spending time with you, I know that you all have busy lives and families. But a phone call or an email is always appreciated. I don't like complaining or dumping my problems on people, but I'll gladly tell you about test results or just talk about the weather. Heck, I'd love to hear about the funny thing that happened on the way to work yesterday.
-I don't want pity, just a little understanding. Have you read about CF? Mitochondrial mutations?
http://www.cff.org/AboutCF/
https://health.google.com/health/ref/Cystic+fibrosis
http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx
When I was 21 an article was written about me:
http://www.ncbi.nlm.nih.gov/pubmed/12400067
(I can even copy the full version if anyone is interested)
-I don't want you to come to the Great Strides walk with your money; I just want to see someone fighting to help cure a disease that will end my life one day. People show up just to walk with Frank, Kate and I.
-I don't want you to come over because I need anything from you, but rather because I *want* to spend time with you. Again; I am about to make reference to something that is not a secret but something that I don't like to think about...
I don't want to die wondering if you knew how I felt or "what if"; I could die before I'm 37. Only 50 percent of us make it farther than that. I know that many of you aren't worried about dying and I probably sound morbid; but the reality is that I am not the healthiest person. Not because I woke up one morning and decided I want to be sick; but because by some cosmic alignment I got CF, two mitochondrial mutations, a thyroid that doesn't work well, and blood that clots fast.
While we are on this subject, I also want to ask you a favor. When you are sick and you need someone to vent too, call me or drop me a line. I can lend a sympathetic ear or maybe give suggestions; but do not tell me that I don't understand. That I just don't get it; because you may not see me wake up in the mornings and cough my head off, many times until I vomit. But I do, You may not see me fall over or run into a wall while I'm trying to walk, and you probably don't have a clue of what is in my medicine cabinet...but trust me...this is real. It is a big deal for me, for my friends and family. Please refrain from telling my husband and daughter that they don't get it either, or that they don't have it tough because they do. More than people realize.
I'm sorry if this sounds selfish or bitchy; that is not my intention. I guess I'm hoping that by admitting to you all that this is what I need; maybe I'll get it from more people. I hope that I offer all of these things, and if I don't...tell me. I will be better.
I'm not speaking for every one with a chronic illness, just for me.
Love,
Chrissy
Dear friends and family,
This letter is for all of you; but I have two different messages, so there will be two parts. For those of you who support me by sending emails or calling me to check in...for those of you who help raise awareness about cystic fibrosis or walk with me during Great Strides...those of you who fundraise with me or on your own...and the ones who make me laugh when I feel like crying...THANK YOU. I'm not sure if I tell you guys enough; but I appreciate you and your support. It means the world to me and to Frank and Kate. Your encouraging words mean more to me than you know.
For those of you who don't know how to offer support to some one with a disease I have somethings to say. I may not understand what it is like to watch someone you care about get sick over and over, but I do understand what it is like to be that person. Because; I am that person. I need to know that my friends and family have my back. That they are thinking of me, praying for me...I don't expect you to drop everything and focus on me but that you get me. You may not get cystic fibrosis or my mitochondrial disease but that you get *me*. I don't want sympathy; I want a little bit of understanding. I'm about to say things I don't say too often...but I am scared. I'm worried about my future, I'm stressed because I feel like a burden.
I hope I don't sound whiny or needy, but I can only assume since I don't get support from some of you that it is my fault. It is not fair for me to expect you to know what I want or need. So this is me telling you.
-I enjoy spending time with you, I know that you all have busy lives and families. But a phone call or an email is always appreciated. I don't like complaining or dumping my problems on people, but I'll gladly tell you about test results or just talk about the weather. Heck, I'd love to hear about the funny thing that happened on the way to work yesterday.
-I don't want pity, just a little understanding. Have you read about CF? Mitochondrial mutations?
http://www.cff.org/AboutCF/
https://health.google.com/health/ref/Cystic+fibrosis
http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx
When I was 21 an article was written about me:
http://www.ncbi.nlm.nih.gov/pubmed/12400067
(I can even copy the full version if anyone is interested)
-I don't want you to come to the Great Strides walk with your money; I just want to see someone fighting to help cure a disease that will end my life one day. People show up just to walk with Frank, Kate and I.
-I don't want you to come over because I need anything from you, but rather because I *want* to spend time with you. Again; I am about to make reference to something that is not a secret but something that I don't like to think about...
I don't want to die wondering if you knew how I felt or "what if"; I could die before I'm 37. Only 50 percent of us make it farther than that. I know that many of you aren't worried about dying and I probably sound morbid; but the reality is that I am not the healthiest person. Not because I woke up one morning and decided I want to be sick; but because by some cosmic alignment I got CF, two mitochondrial mutations, a thyroid that doesn't work well, and blood that clots fast.
While we are on this subject, I also want to ask you a favor. When you are sick and you need someone to vent too, call me or drop me a line. I can lend a sympathetic ear or maybe give suggestions; but do not tell me that I don't understand. That I just don't get it; because you may not see me wake up in the mornings and cough my head off, many times until I vomit. But I do, You may not see me fall over or run into a wall while I'm trying to walk, and you probably don't have a clue of what is in my medicine cabinet...but trust me...this is real. It is a big deal for me, for my friends and family. Please refrain from telling my husband and daughter that they don't get it either, or that they don't have it tough because they do. More than people realize.
I'm sorry if this sounds selfish or bitchy; that is not my intention. I guess I'm hoping that by admitting to you all that this is what I need; maybe I'll get it from more people. I hope that I offer all of these things, and if I don't...tell me. I will be better.
I'm not speaking for every one with a chronic illness, just for me.
Love,
Chrissy
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.
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