Yesterday was slightly rough. I'm usually a pretty tough cookie, I can handle the emotional components of having Cystic Fibrosis. I know the ropes-things aren't always easy, but I take it and make the best. But yesterday, last night actually, I crumbled.
My friend Maureen (Mo) has been pretty ill lately. I've known her since we were knee high to a grasshopper. We used to be snot nosed little girls running through Sunny Shores Sea Camp thinking we were in charge of things. She's the boss lady. She has so much sass in her-and its what I love most about her. She never takes crap from anyone, and my goodness she could make me laugh so hard I could black out from laughter! But she is sick now, and I can't even read her perky little updates on Facebook. It hurts. In fact, it aches, my heart is breaking for her. She's on a vent right now, and things are not looking to positive. But she is a pistol, and a fighter, and I know she won't let this little battle get in her way. She's been blessed with the most loving family and friends-and she knows this, and knows how we love her. I selfishly hope she keeps fighting, even if it is for us and not herself anymore. I want one more time to see her and have her make me smile.
All this happening had opened up a wound with CF that I tend to try and hide with positive mental bandages. When I first became really sick, Jon described myself as being a "sandcastle" to him. At first I didn't understand. But when you have a sandcastle, and its nice and compacted with hard sand, and you go to hug it and love it crumbles away from you. This is how it feels having friends with CF. I love them so much, and I wouldn't want to NOT know them, but the more I love the more it feels they are washed away from me. It becomes hard. I only have a handful of CF friends still alive, and I make more all the time, but the ones who've been taken away that have made a large impact on my heart. When I fight, I fight in their honor. Some don't make it because of things they did, the way the took care of themselves-and I learn from it- as if that was why God gave them to me in the first place. I'm at an age now where I have seen more friends go than most people have lost in a lifetime. And Mo fighting this battle has made this pain come to the surface. I don't want to lose anyone else. My mind is not ready. Neither is my heart.
All that being said, yesterday on the way home from dinner, I just crumbled in the car. I was sobbing uncontrollably, inconsolably. Poor Jon didn't know what to say or how to comfort me, because he to knows what its like to love a sandcastle that is being washed away. We both agree though, it is hard to watch the castles being swept to sea- we love,cherish, and adore every mintue we got to play and enjoy the sandcastle. This time here, in my sandcastle, is the most precious time I have.
Saturday, May 29, 2010
Thursday, May 27, 2010
$10 for an IPAD
This post is coming from Ashley's cousin, Jenn. Please continue to read and join us in our IPAD giveaway! In an effort to help as much we can, our family is going to have a giveaway. We will be purchasing a brand new IPAD. From May 1st-31st we will be running this giveaway. I will post details here and every day on Facebook.
For every $10 donation that is made to Ashley's transplant fund, an entry will be made on your behalf to the IPAD giveaway.
Please make sure that you click on the red "contribute now" button on the left side of the page above Ashley's picture. For multiple enteries to count, they must be done in $10 increments. If you make 2 $10 donations, you will have 2 enteries. If you make 10 $10 donations, you will have 10 enteries. The donations go directly to the National Transplant Assistance Fund and they are tax deductible. In addition to an IPAD entry for every $10 donation you make, our family will donate $1 for every person whom makes a donation.
Ashley will randomly select a winner June 14th. This will allow for all of the donations to be posted and every entry counted. Ashley will have herself video taped as she randomly selects the winner. The video will be posted here and also on Facebook. I am hopeful that this great idea will work out as great for Ashley as it did for the children in Kenya whom benefited from a fundraiser just like this one.
Please share this with friends, family, on your facebook or on your own blog. The more aware we can make people about the challenges that people face in getting the proper medical care, the more good we can do. Thank you in advance for your support and thank you for taking the time to read about Ashley and her newest adventure.
$10 can make a world of difference and give someone the GIFT OF BREATHING!
To make your TAX DEDUCTIBLE contribution today, go to http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/8709F3F5-F91C-86EB-6D967F9A587472CE and click on the red "contribute now" button.
Neither Apple nor the National Transplant Assistance Fund are a part of this fund raiser. Neither have supplied any material or endorsement All proceeds are to benefit the National Transplant Assistance Fund in honor of Ashley Kennen.
A look at why we are doing this fundraiser - Ashley, through someone else's eyes:
Ashley is my 26 year old cousin who at the age of 9 months was diagnosed with Cystic Fibrosis (CF). It is a genetic disease that is basically the overproduction of mucus. Right now, Ashley is facing a huge hurdle in her life. She is at the point in this disease where she requires a lung transplant to be able to continue to breathe.
Ashley is an amazing woman and just like a sister to me. She has managed, despite having CF, to go to college and get her degree. She got a job as an ultra sound technician, bought a house, and is now married and the proud mama of 2 dogs. She has made something of her life when faced with much less than ideal of cirumstances. We are all faced with challenges in life. While hers may be greater than some others, we all push through and we all survive. That is just what Ashley is trying to do.
Because Ashley went to school and got a job, she lost the title of "disabled". Disability and Social Security benefits ended - which as long as you are able to work and be a productive member of society, I understand. But what I don't understand is why now, when being a productive member of society is what Ashley is struggling with - per her disease, she can no longer receive those benefits. It is a 2 year process to reclaim the Disability status. She does not have 2 years to wait for those lungs. Had she simply lived off of those benefits and not gotten a job or gone to school - there would be no problem and they would be available to her. Does that process make sense at all?
Ashley is in need of her lung transplant. They have insurance, but the costs of such a transplant (mainly care and medicinal after transplant) far exceed that which insurance covers. All would be completely paid for with Social Security and Disability had she not gotten a job - but she did.
Ashley went 2 weeks ago for an evaluation. There is a small window of opportunity to do a transplant on a CF patient (and I assume any transplant patient). You must be sick enough to take the risk of surgery and rejection, yet healthy enough to with stand the surgery and come off the ventilator. Last Thursday Ashley found out that she is, in fact, an ideal candidate for the transplant at this time in her health. However, due to insurance restrictions, they will not list her.
Niether Ashley, nor her family are going to let insurance and regulations stop her from breathing. We will do whatever we can to help, and hope you will join. Ashley will be enjoying her new lungs while one of you will enjoy your new IPAD.
For every $10 donation that is made to Ashley's transplant fund, an entry will be made on your behalf to the IPAD giveaway.
Please make sure that you click on the red "contribute now" button on the left side of the page above Ashley's picture. For multiple enteries to count, they must be done in $10 increments. If you make 2 $10 donations, you will have 2 enteries. If you make 10 $10 donations, you will have 10 enteries. The donations go directly to the National Transplant Assistance Fund and they are tax deductible. In addition to an IPAD entry for every $10 donation you make, our family will donate $1 for every person whom makes a donation.
Ashley will randomly select a winner June 14th. This will allow for all of the donations to be posted and every entry counted. Ashley will have herself video taped as she randomly selects the winner. The video will be posted here and also on Facebook. I am hopeful that this great idea will work out as great for Ashley as it did for the children in Kenya whom benefited from a fundraiser just like this one.
Please share this with friends, family, on your facebook or on your own blog. The more aware we can make people about the challenges that people face in getting the proper medical care, the more good we can do. Thank you in advance for your support and thank you for taking the time to read about Ashley and her newest adventure.
$10 can make a world of difference and give someone the GIFT OF BREATHING!
To make your TAX DEDUCTIBLE contribution today, go to http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/8709F3F5-F91C-86EB-6D967F9A587472CE and click on the red "contribute now" button.
Neither Apple nor the National Transplant Assistance Fund are a part of this fund raiser. Neither have supplied any material or endorsement All proceeds are to benefit the National Transplant Assistance Fund in honor of Ashley Kennen.
A look at why we are doing this fundraiser - Ashley, through someone else's eyes:
Ashley is my 26 year old cousin who at the age of 9 months was diagnosed with Cystic Fibrosis (CF). It is a genetic disease that is basically the overproduction of mucus. Right now, Ashley is facing a huge hurdle in her life. She is at the point in this disease where she requires a lung transplant to be able to continue to breathe.
Ashley is an amazing woman and just like a sister to me. She has managed, despite having CF, to go to college and get her degree. She got a job as an ultra sound technician, bought a house, and is now married and the proud mama of 2 dogs. She has made something of her life when faced with much less than ideal of cirumstances. We are all faced with challenges in life. While hers may be greater than some others, we all push through and we all survive. That is just what Ashley is trying to do.
Because Ashley went to school and got a job, she lost the title of "disabled". Disability and Social Security benefits ended - which as long as you are able to work and be a productive member of society, I understand. But what I don't understand is why now, when being a productive member of society is what Ashley is struggling with - per her disease, she can no longer receive those benefits. It is a 2 year process to reclaim the Disability status. She does not have 2 years to wait for those lungs. Had she simply lived off of those benefits and not gotten a job or gone to school - there would be no problem and they would be available to her. Does that process make sense at all?
Ashley is in need of her lung transplant. They have insurance, but the costs of such a transplant (mainly care and medicinal after transplant) far exceed that which insurance covers. All would be completely paid for with Social Security and Disability had she not gotten a job - but she did.
Ashley went 2 weeks ago for an evaluation. There is a small window of opportunity to do a transplant on a CF patient (and I assume any transplant patient). You must be sick enough to take the risk of surgery and rejection, yet healthy enough to with stand the surgery and come off the ventilator. Last Thursday Ashley found out that she is, in fact, an ideal candidate for the transplant at this time in her health. However, due to insurance restrictions, they will not list her.
Niether Ashley, nor her family are going to let insurance and regulations stop her from breathing. We will do whatever we can to help, and hope you will join. Ashley will be enjoying her new lungs while one of you will enjoy your new IPAD.
Wednesday, May 26, 2010
Finally
Life is finally coming together! As you know, I had been having some issues with switching from Medicaid w/ HMO to just Share of Cost(SOC)...For some reason, they can only 1/2 get it right at that place! I've been told that the SOC was added, but the HMO cannot be removed until June 1st. Thank goodness the CF Freedom Pharmacy (a little shout out!) was able to send me my meds anyways, and back bill for them. They helped me out a lot. I had got home from a rough day, and there was a HUGE box on my door step filled to the brim with my meds. It was a little like Christmas for me =).So now, I wait until June 1st to come in hopes that all falls into place with no bumps in the road. I had involved Senator Nelsons office in the whole ordeal in hopes to expedite things, but at this point I am just fighting to get things switched 1-2 weeks sooner than they will be solved on their own. Anyways, it will be fine I'm sure!
June 2nd I have a CF clinic appointment. I'm kind of excited to meet (hopefully) Dr.Rolfe. I've heard awesome things about him. I also hope to catch up with some people in Tampa while I'm there. Everytime I go, I try to see who I can when I can.
So I've mentioned before I love where I work. And some people can't understand why...LOL...but here's a great reason: the people. The girls I work with have arranged a Yard Sale to help raise money for my transplant.(June 26/27, July 10/11, and July 24/25) in Lady Lake. Super excited about it, but mostly honored. I feel unworthy of such kindness-I just hope the girls know I would do it for them anytime too. I so hope to be healed quickly so I can go back to work there if they'll take me back! (July 7th I'll have been there 2 years!)
Also, another cool event coming up was arranged by my Father and Mother-in-Law. They've arranged a golf tourney July 17th (July will be a busy month for us!) in Ocala. Don't have all the details quite yet, but when I get them I'll get it posted. Again, I'm very honored they've taken the time to get this together for me. I love them just like my own parents...and not many can say that about their in-laws LOL.
Today, I'm feeling pretty chipper...saw my Dad, going to watch some shows I missed b/c I go to sleep so darn early, and then going to clean the house up. Can't wait to see the hubby and discuss what we're going to do with our little garden. Its SO cute! I can't wait to actually have food on it! The downside to it all, is I can't really help tooooo much, because M.R.S.A is in soil, and is potentially deadly to me...but I like to help pick what we plant and help with the landscaping.
Anyways, I hope everyone is doing well =) And please say a little prayer for a fellow CFer of mine Maureen (Mo). She's been battling an infection from her port that has knocked her off her feet pretty good. She's a survivor though, and I'm sure she'll be back to her sassy self soon enough!
June 2nd I have a CF clinic appointment. I'm kind of excited to meet (hopefully) Dr.Rolfe. I've heard awesome things about him. I also hope to catch up with some people in Tampa while I'm there. Everytime I go, I try to see who I can when I can.
So I've mentioned before I love where I work. And some people can't understand why...LOL...but here's a great reason: the people. The girls I work with have arranged a Yard Sale to help raise money for my transplant.(June 26/27, July 10/11, and July 24/25) in Lady Lake. Super excited about it, but mostly honored. I feel unworthy of such kindness-I just hope the girls know I would do it for them anytime too. I so hope to be healed quickly so I can go back to work there if they'll take me back! (July 7th I'll have been there 2 years!)
Also, another cool event coming up was arranged by my Father and Mother-in-Law. They've arranged a golf tourney July 17th (July will be a busy month for us!) in Ocala. Don't have all the details quite yet, but when I get them I'll get it posted. Again, I'm very honored they've taken the time to get this together for me. I love them just like my own parents...and not many can say that about their in-laws LOL.
Today, I'm feeling pretty chipper...saw my Dad, going to watch some shows I missed b/c I go to sleep so darn early, and then going to clean the house up. Can't wait to see the hubby and discuss what we're going to do with our little garden. Its SO cute! I can't wait to actually have food on it! The downside to it all, is I can't really help tooooo much, because M.R.S.A is in soil, and is potentially deadly to me...but I like to help pick what we plant and help with the landscaping.
Anyways, I hope everyone is doing well =) And please say a little prayer for a fellow CFer of mine Maureen (Mo). She's been battling an infection from her port that has knocked her off her feet pretty good. She's a survivor though, and I'm sure she'll be back to her sassy self soon enough!
Tuesday, May 11, 2010
Family
My family is pretty tough. In fact, tougher than I am. My Dad tells me stories of when I was just a little baby, and how I was always so sick. He was going shopping with my Mom and his Mom, but they left Dad and I in the car. I was still a baby, so Dad crammed himself into the backseat of the two door car to sit next to me. Once I started fussing, he picked me up-and I exploded like a time bomb! Out both ends, all over the poor guy! And he didn't even throw me! ...Now that is love!
Or what about the time I was in the hospital, I was about 14, and a nurse kept insisting that these two drugs could be combined-and I kept telling her they couldn't. Finally, at 4 a.m that morning, I called my Mom crying telling her to call someone quick because this RN was trying to kill me! Thank God my Mom is a RN too! Things got under control shortly after, but my Mom was there to answer my call immediately.
Then there was my little brother. Oh the fights we have fought! We're about 5 1/2 years apart and light years away in our thinking. But the one time I had appendicitis he was there. I could barely get out of the chair, and he carried me to the car, like a superhero, so I could get to the hospital. His girlfriend has even come to Leesburg to help me go shopping (no really, I needed help). LOL
And my cousin, Jenn...She recently had an experience with me, poor girl. After watching that tube being shoved down my nose and having myself leak out of every pore in my body, she still took me out to eat after! She was prepared to even stay the night with me! Only then did I really test her, when I had a reappearing act of my chicken and wild rice soup leap across the table, which she caught with a plate AND had no spills. Pretty nifty.
My Grandpa and his girlfriend Janette, they're pretty awesome too. Grandpa comes up with her bringing huge meals already made so Jon and I don't have to cook. And Grandpa is always entertaining!
My husband had to bathe me for a while. It was a definite change in our relationship. You are in love and committed when you get married, but when you bathe,dress, and clean up puke from the one you love-its a whole other level. He has had to see things that scare even me. And when he got sick,the ONE time he has, I was a nervous wreck! How does he do it?
My family has done this stuff for me out of love. Maybe I've only mentioned a little here, but its more than anyone would careor have time to read about. And as much love as they give, I feel I could never be able to show my gratitude. They have helped me survive. They are why I survive. And I'll keep pushing for them.
Or what about the time I was in the hospital, I was about 14, and a nurse kept insisting that these two drugs could be combined-and I kept telling her they couldn't. Finally, at 4 a.m that morning, I called my Mom crying telling her to call someone quick because this RN was trying to kill me! Thank God my Mom is a RN too! Things got under control shortly after, but my Mom was there to answer my call immediately.
Then there was my little brother. Oh the fights we have fought! We're about 5 1/2 years apart and light years away in our thinking. But the one time I had appendicitis he was there. I could barely get out of the chair, and he carried me to the car, like a superhero, so I could get to the hospital. His girlfriend has even come to Leesburg to help me go shopping (no really, I needed help). LOL
And my cousin, Jenn...She recently had an experience with me, poor girl. After watching that tube being shoved down my nose and having myself leak out of every pore in my body, she still took me out to eat after! She was prepared to even stay the night with me! Only then did I really test her, when I had a reappearing act of my chicken and wild rice soup leap across the table, which she caught with a plate AND had no spills. Pretty nifty.
My Grandpa and his girlfriend Janette, they're pretty awesome too. Grandpa comes up with her bringing huge meals already made so Jon and I don't have to cook. And Grandpa is always entertaining!
My husband had to bathe me for a while. It was a definite change in our relationship. You are in love and committed when you get married, but when you bathe,dress, and clean up puke from the one you love-its a whole other level. He has had to see things that scare even me. And when he got sick,the ONE time he has, I was a nervous wreck! How does he do it?
My family has done this stuff for me out of love. Maybe I've only mentioned a little here, but its more than anyone would careor have time to read about. And as much love as they give, I feel I could never be able to show my gratitude. They have helped me survive. They are why I survive. And I'll keep pushing for them.
Friday, May 7, 2010
I'M OFFICIAL!!!
Well its official...I can finally say it...."I'm on the lung transplant list!!!" So very happy and grateful this ordeal of just being listed is over-for now. I say for now, because it can always change with the wind.
Wednesday, my cousin Jenn headed south to stay the night with me only to wake up the next morning and drive another 2 hours south to Tampa. Poor girl had to see a lot! She watched as a tube that was like 2 1/2 spaghetti noodles around was inserted into my nose and down my esophagus, then slowly pulled out as I sipped water. Seems clean enough, right? WRONG! I was drooling and my nose was running and I was crying...I was truly a baby! But my goodness it hurt!!! It would hit my gag areas and as soon as I thought I was settled and it was okay, they'd move it again! Not fun! Then, they took an even smaller tube and put it down my nose and down the back of my throat. This was supposed to stay in place for 24 hours to monitor what happens with the esophagus when I cough, eat, burp...etc. Well I was told to eat only hot stuff and that would make the tube more comfortable. Within two hours I was puking and unable to breathe! I felt like I couldn't get enough air in, and I had no idea how I was going to sleep with it in either. After losing lunch all over Panera (who wasn't very good sports about it and tossed our food before we were done) I had to take the tube out and throw the towel in. I tried. I really did, but it was way to scary not being able to catch my breath, gag, and cough...too much! So we had waited around to see if TGH would be able to see me then, to sign the magical papers- but no, I had to head home.
So last night, after being allowed my savior-Prilosec...and Tramadol, I had gotten some extra energy and cleaned the house. I love that my husband and everyone else tries to keep my house straight when I can't-but the house was missing my OCD touch! LOL So it wasn't until about 10pm I finally crashed and got ready for today.
Now today had a weird start. I was very, very cranky the whole morning, and the whole way there. I have no clue why. It could have been nerves that I wasn't acknowledging. When we finally got in and saw the first receptionist who said "Its a big day for you isn't it", then I got excited! She had me do paperwork, get blood drawn, weight, and PFTs- then I could see the transplant coordinator and the doc. Well, the good news is I haven't lost any more weight-may not be gaining, but I'm certainly not losing. And my PFTs were pretty stable. I had to walk for the doc with a oxygen saturation monitor on (and myself and the RN think the SAT monitor was broken), only to find he wants me on 4 Liters if I'm moving around. Ok, no biggie. Plus, he said it would add points to my ALOC score (I'll get back to the meaning of that when I get the papers out of the car). But this number is basically on a scale of 1-100 and 100 is the worst health, they would not do a transplant then. and at 1, you probably wouldn't be listed. I was 37 =) (For those who know me, notice no 9's!!) He is trying to add a point or so I think by upping the O2. I have about a 6-12 month wait now. Any day or time I can get the call to start my new life....I can go back to the old me, but new and improved! How exciting! I have so much more to ramble about, so I'm thinking I'll have another blog come Sunday. Happy Mother's Day!! I hope all the Mom's out there get the love they give....I know my Mom and Mother-in-law are pretty super, so I hope to give them a great day. Tonight, I'm going to breathe a little easier knowing that any moment I will being breathing freely!!! LOTS OF LOVE TO ALL OF YOU!!!! XOXO
Wednesday, my cousin Jenn headed south to stay the night with me only to wake up the next morning and drive another 2 hours south to Tampa. Poor girl had to see a lot! She watched as a tube that was like 2 1/2 spaghetti noodles around was inserted into my nose and down my esophagus, then slowly pulled out as I sipped water. Seems clean enough, right? WRONG! I was drooling and my nose was running and I was crying...I was truly a baby! But my goodness it hurt!!! It would hit my gag areas and as soon as I thought I was settled and it was okay, they'd move it again! Not fun! Then, they took an even smaller tube and put it down my nose and down the back of my throat. This was supposed to stay in place for 24 hours to monitor what happens with the esophagus when I cough, eat, burp...etc. Well I was told to eat only hot stuff and that would make the tube more comfortable. Within two hours I was puking and unable to breathe! I felt like I couldn't get enough air in, and I had no idea how I was going to sleep with it in either. After losing lunch all over Panera (who wasn't very good sports about it and tossed our food before we were done) I had to take the tube out and throw the towel in. I tried. I really did, but it was way to scary not being able to catch my breath, gag, and cough...too much! So we had waited around to see if TGH would be able to see me then, to sign the magical papers- but no, I had to head home.
So last night, after being allowed my savior-Prilosec...and Tramadol, I had gotten some extra energy and cleaned the house. I love that my husband and everyone else tries to keep my house straight when I can't-but the house was missing my OCD touch! LOL So it wasn't until about 10pm I finally crashed and got ready for today.
Now today had a weird start. I was very, very cranky the whole morning, and the whole way there. I have no clue why. It could have been nerves that I wasn't acknowledging. When we finally got in and saw the first receptionist who said "Its a big day for you isn't it", then I got excited! She had me do paperwork, get blood drawn, weight, and PFTs- then I could see the transplant coordinator and the doc. Well, the good news is I haven't lost any more weight-may not be gaining, but I'm certainly not losing. And my PFTs were pretty stable. I had to walk for the doc with a oxygen saturation monitor on (and myself and the RN think the SAT monitor was broken), only to find he wants me on 4 Liters if I'm moving around. Ok, no biggie. Plus, he said it would add points to my ALOC score (I'll get back to the meaning of that when I get the papers out of the car). But this number is basically on a scale of 1-100 and 100 is the worst health, they would not do a transplant then. and at 1, you probably wouldn't be listed. I was 37 =) (For those who know me, notice no 9's!!) He is trying to add a point or so I think by upping the O2. I have about a 6-12 month wait now. Any day or time I can get the call to start my new life....I can go back to the old me, but new and improved! How exciting! I have so much more to ramble about, so I'm thinking I'll have another blog come Sunday. Happy Mother's Day!! I hope all the Mom's out there get the love they give....I know my Mom and Mother-in-law are pretty super, so I hope to give them a great day. Tonight, I'm going to breathe a little easier knowing that any moment I will being breathing freely!!! LOTS OF LOVE TO ALL OF YOU!!!! XOXO
Monday, May 3, 2010
My Accessories
Recently I learned how curious people are. I've had to add an accessory or two to manage to be able to go out in public. Somedays, I use a wheelchair since my fatigue can make it pretty hard to get things done. And somedays, most days, I have portable oxygen. I am sure almost everyone has seen someone in a wheelchair or with O2 at some point in their life, but each look I get is as if its a new thing. And I understand. Curiosity, as innocent as it may be, can sometimes be cruel.
Most people will look once, then twice, then keep going. But others, and I'm surprised to say this, but older people can be the worst. They stare. If they had laser eyes I'd be fried! I want people to ask me why I'm being wheeled around. I look perfectly healthy on the outside- if you don't notice the clubbed toes and fingers from years of lack of O2. So I can understand questioning-why is she being wheeled around? And the oxygen isn't easy to hide either. While some days I can mask the tank under my purse there are days when all I carry is the oxygen. Its a distraction from what we are taught to look at when talking to someone-their eyes. I even did the "stare" before I was in this position. Its all curiousity, and thats okay....but ask. The other day in a store a little girl asked , "Mommy, why is that lady being pushed in a chair? And whats that thingy on her face?" I just smiled. I could tell the Mom was embarrassed, she mouthed "sorry" to me, and told her daughter "Its not nice to stare. She doesn't feel well." And ya know, the Mom nailed it on the head. I don't feel well.
I hope people can become educated about Cystic Fibrosis enough so that one day when I say "I have Cystic Fibrosis" they can say "Oh! I know all about it. Its genetic right?And it affects your lungs and pancreas mainly. How are you doing?" This month is Cystic Fibrosis awareness month and I encourage those who don't feel they know enough about it to do some research. The most informative site is http://www.cff.org/ With all kinds of questions and answers. And if your a new Mom or a Mom-to-be, make sure your child is evaluated for it!...annnnd HAPPY EARLY MOTHER'S DAY! =)
Most people will look once, then twice, then keep going. But others, and I'm surprised to say this, but older people can be the worst. They stare. If they had laser eyes I'd be fried! I want people to ask me why I'm being wheeled around. I look perfectly healthy on the outside- if you don't notice the clubbed toes and fingers from years of lack of O2. So I can understand questioning-why is she being wheeled around? And the oxygen isn't easy to hide either. While some days I can mask the tank under my purse there are days when all I carry is the oxygen. Its a distraction from what we are taught to look at when talking to someone-their eyes. I even did the "stare" before I was in this position. Its all curiousity, and thats okay....but ask. The other day in a store a little girl asked , "Mommy, why is that lady being pushed in a chair? And whats that thingy on her face?" I just smiled. I could tell the Mom was embarrassed, she mouthed "sorry" to me, and told her daughter "Its not nice to stare. She doesn't feel well." And ya know, the Mom nailed it on the head. I don't feel well.
I hope people can become educated about Cystic Fibrosis enough so that one day when I say "I have Cystic Fibrosis" they can say "Oh! I know all about it. Its genetic right?And it affects your lungs and pancreas mainly. How are you doing?" This month is Cystic Fibrosis awareness month and I encourage those who don't feel they know enough about it to do some research. The most informative site is http://www.cff.org/ With all kinds of questions and answers. And if your a new Mom or a Mom-to-be, make sure your child is evaluated for it!...annnnd HAPPY EARLY MOTHER'S DAY! =)
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