Against all odds

AGAINST ALL ODDS FOR YOUNG ADULTS FIGHTING CYSTIC FIBROSIS

How does having children with cystic fibrosis effect parents?

Getting to Know Kristen Ciolfi

5 smoothies to help you stay healthy and happy April 2018 Vol. 11 $3.00

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APRIL 2018 Letter From The Editor How does having children with cystic fibrosis effect Parents?

Getting to know Kristen Ciolfi Pure Jess Great Strides Walk

5 Smoothies to stay healthy

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Welcome

Letter from the Editor

Dear readers, Welcome to a magazine that will change your life! You may think I’m kidding but I’m not. This magazine is much more then what you think it is. Instead of sitting here and thinking, “great another magazine to make me think about my life threatening disease.” Think of this magazine as a codebook, helping you crack life and make the most out of the time you have. Those who are reading this magazine most likely have Cystic Fibrosis, and we all know that living with this illness is not a dream. But have you ever thought about it as a blessing? Throughout my entire life I have looked as Cystic Fibrosis as something that was given to me because I did something wrong. I would always say to myself” What did I do to deserve this?” Honestly, I started hating myself and tried to come up with list of reasons why I deserved this. Then I woke and smelt the coffee. This was NOT a curse. I am not being punished. I am not doing anything wrong. I realized that I was the strongest person that could have gotten this illness. That He knew I would be able to handle it instead of the other person he was thinking about. Once I realized that I was capable of living the life I wanted, instead of CF living my life for me, I knew it was okay that I was chosen. By all means, I do not wish anyone to have this illness, but if someone was to get it I am happy it was I. I decided to create “Against All Odds” because growing up, I felt alone. No one knew what I was going through, heck, I didn’t know what I was going through. When I was going through those tough times, I wish I had something that I could turn to; to tell me everything was going to be all right.

Hearing other peoples stories could honestly help just one person and to me that would be enough. “Against All Odds” is a magazine that is written by the people. Having others with CF write the stories in the magazine will just give the readers a bond and a trust with the magazine itself. I want all of us to be real. Whether we like it or not, we are stuck with this disease. We can no longer hide from it or wish we didn’t have it anymore. All we can do is come together and grow stronger as one. This will be a judgment free magazine, a place where you can go and get outside your head and just read others stories. Cystic Fibrosis does not define who we are. We need to fight together.

Sincerely, Editor In Chief, Jessica Lindell PAGE 3

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Investigative Story

How does having children with cystic fibrosis effect parents?

W

hen dealing with Cystic Fibrosis, a lot of people focus on those who have it. But have you ever thought about how the parents feel having to care for a child that has it?

I sat down and talked to two parents of children who have Cystic Fibrosis. Their answers to this question were unbelievable.

Shortly, you will hear from them but just to warn you it is saddening. When I was talking to these parents, you could hear the pain in their voice and the guilt they carry. Some of these parents had to go through this battle alone and some had family and loved ones by their sides. They wanted to make sure no attention was taken off their children, because all three believe that their children are the main priority, as most good parents do.

Not only was I able to talk to two parents, but also I was able to talk to a pediatrician that specializes in Cystic Fibrosis. I wanted to speak to hear because she talks to a lot of parents when their children come in for appointments, or even for a “clean out.�

Which is a two-week period where CF patients stay at the hospital and do vigorous breathing treatments.

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In writing this story, I want to educate my readers about how deep CF goes. Of course, those who have it know how tough and strenuous it is. Have you ever thought about how it makes you parents or loved ones feel? From your friends, to your boyfriend/ girlfriend, to even your teachers.

How Does Having Children With Cystic Fibrosis Effect Parents?

I first spoke with Kathleen Lindell. She is the mother of a two but only one of her children has Cystic Fibrosis. Speaking with Mrs. Lindell truly opening up my eyes about how much they have to sacrifice in order for her children to live a normal life. When I first asked the question, she didn’t open up as much as I wished. As the conversation continued she really let go and gave the honest truth about how she feels.

“When my daughter was born, there were some complications. No parent wants to have their baby taken away from them right when they are born but that’s what they had to do. As soon as she was born, they knew something was not right. They rushed us over to U Mass Memorial to get opinions from their doctors. As soon as she got there, they knew it was Cystic Fibrosis. She immediately went into surgery. For the first month of her life she was in the hospital, being taken care off. My husband and I already had a child so we couldn’t be at the hospital as much as we wanted to but we were able to work together and take turns of going to the hospital and staying home. When my daughter was finally released, I was so scared to take her home. What if she can’t breathe, what if she needed medical attention and I can’t help her? I blamed myself for giving her Cystic Fibrosis. I always thought about how my first child was fine but Jessica was not. What did I do wrong? Why is she being punished for something I might have done? She doesn’t deserve to go through this pain. To this day I still blame myself, but seeing how strong and brave Jessica is, I am a lot less stressed out by it.

She is incredibly strong and honestly one of my hero’s. I do thank God because there are kids out there that are not

Investigative Story

Studies from Cystic Fibrosis News Today, says that in order to cope with having a child who has CF you cannot be alone.

Having to take care of a child with Cystic Fibrosis alone is extremely hard.

It is possible, but if you don’t have to do it alone, they say you really should not.

They also stress that it is okay to feel emotions.

You do not have to have a strong face the entire time. We know it’s not easy, and they are saying that it is okay to not be perfect. Cry if you need too, scream from the rooftops. Never keep in your emotions. Since caring for a child with CF is so intense, letting your emotions build up and eventually explode is not the way it should be.

When talking to Doctor Michelle Trivedi about seeing parents who are talking care their children with Cystic Fibrosis, she said that they forget to take care of themselves. “A lot of parents forget to take care of themselves, physically and mentally. I have seen parents who have babies with Cystic Fibrosis that never leave their sides and that is not mentally okay for them to do. Parents seem to forget about themselves when they have a child regardless, but the parents who have to care for a child with CF forget about themselves completely. Luckily, here we have physiatrist who speaks to parents about how to cope with raising a child with Cystic Fibrosis. A lot of the times I refer them to her because she is amazing and parents need help too.”

For the past 5 years Doctor Trivedi has worked at UMass and she has grown so close to her patients at the hospital. She truly has everyone’s best interest in mind.

Trivedi said, “Whenever I have a patient I always ask their parents how they are doing. My number one priority is always my patients, but parents need attention too. They need a reminder that they are strong and amazing just as much as the patient does.”

Not only is it important for patients to have a good doctor, but as

The last person I talked with was a single mother who has a child with Cystic Fibrosis. I wanted to get an opinion from a single mother because raising a child on your own is difficult enough but raising a child with an illness is ten times harder. I sat down with Doreen Jewell. When I first asked her the question, the look at her face said it all. “Raising any child is difficult but doing it alone with a child who is sick is a lot harder. One thing that helped me out is that my son and I are extremely close. I am always there for him and that created a bond that we share together forever. Whenever I am feeling anxious or scared, he is the first person by my side. He understands how hard it is to take care of him and he tries every day to make it easier for me. Having a sick child truly makes you realize the good and the bad in life. I am blessed that my son is where he is today, but eventually we are going to it a rough patch. You are always on an emotional roller coaster and if you know a parent, who has to take care of a sick child, give them the benefit of the doubt. They are struggling and could use a kind word. We all have our own battles, so treat people as if they are one of your loved ones. Meeting parents who have children with CF has also helped me. We can meet up, discuss our life, and we are always there for one another. If you can find a friend group to chat with, you really should.”

Listening to multiple people speaks out about how much of a struggle it is but how they get by is truly inspiring. I wanted to ask this question because I know it is forgotten about sometimes. Always keep in mind that people sacrifice so much for their loved ones and we have to be grateful for the life that we live. To the parents out there, just know you are not alone. You are brave and strong.

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Profile

Getting To Know Kristen Ciolfi

Kristen Ciolfi is a junior at Lasell College who has Cystic Fibrosis. She was diagnosed when she was in middle school, and then she found out her whole family had it. Kristen has a form of CF that is not a strenuous as other cases. For example, Kristen went a good portion of her life without knowing she had it. Meaning, her symptoms were not as serious as some other cases until she grew older. I was able to talk to Kristen about her illness and see how she feels about living with Cystic Fibrosis.

I first asked her how living with Cystic Fibrosis has affected her life. “CF affects my everyday life, from having to do breathing treatments to constantly having my schedule filled with doctor’s appointments, CF is always with me. I think about certain situations differently from other people. For example if I feel even the slightest symptom of feeling sick I usually will cancel plans so I can rest up. I do have a milder case of CF than most which I am grateful for but it still affects me every day,” said Ciolfi. Understanding that CF will always come first in your life is major when figuring out how to live with it. Those who have CF can’t hide from it and can no longer push it off to the side.

Of course, now days we are extremely lucky to have the medicine we do for it, but it is not curable, and solely relies on us to take care of ourselves. I wanted to know how Ciolfi felt about living with CF; did she find it to be a blessing or a curse? Ciolfi said, “I consider it both, a curse because of what trouble it brings to my life but a blessing because I see the world differently than most and am grateful every day for things like breathing clearly which most people take for granted.”

Since having CF is pretty much like have a second job, we can only look at it as a positive thing. There is no cure for CF, so sitting there being sad about having this disease will only make the time you do have, miserable. We have to remember the little things in life are important. For some CF patients, like Ciolfi, she can live her life to be pretty much normal.

Taking out the necessary time to do treatments and such, but she is able to play sports, go to college, hang out with friends.

That goes a long way. Especially to those who have CF and are stuck in the hospital getting treatments every other month.

With that being said, I asked if Ciolfi felt that some days are harder than others. She replied with, “Yes specifically when I have to work long shifts as a waitress and I find myself physically drained after a normal 8 hour shift when other workers will have to work a double before feeling so fatigued.”

Ciolfi wishes that more people would be educated about CF, since there are so many different types out there. “If people could be more educated about CF, then I feel it would get the recognition that it deserve,” said Ciolfi.

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Pure Jess Dear Pure Jess, Lately I have been feeling extremely down on myself and realized I’m in a “funk” I can’t seem to get out of.

I don’t want to get out of bed, nothing excites me anymore, and I feel like I’m letting everyone down if I don’t show them a happy “me.” I can no longer be in this is slump because I’m afraid of what it might lead to. Can you please help me get back to my true self and out of this hole I feel I am buried under?

Sincerely, Stuck

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Adive column

Dear Stuck, If you think that me or anyone else doesn’t get into a weird mood and gets down on themselves, then you are totally wrong. I go through these episodes in my life where I feel like I’m incapable of doing anything. It’s okay not to be okay. It’s not all glamour in life; we all go through situations that change who we are. As humans, we don’t have to wake up every day and be the happiest person in the world. I have days where I feel like I can control the world and other days where I feel like the smallest person to walk the planet. I know I go through these days because in the end, it makes me a stronger person. Being able to say that I got out of one of the hardest parts of my life is empowering. Knowing I was in a dark hole and now I am able to see the light and be grateful for the life I live.

We don’t get handed anything that we cannot handle.

You may be feeling hopeless and down now but in a month, heck even a couple weeks, your life can be totally different. “This too shall pass.” Every day I wake up and think of this quote because I know whatever I’m going through will not be happening forever. For a fact, nothing last forever and I will get through this. If you keep saying that to yourself, it will always be a reminder to not dwell on the bad things in life. Remembering just how fortunate you are to be alive should be enough to grow stronger. As a society, we take things for granted. We forget that tomorrow is not promised and that as humans we owe it to ourselves to live the best life we can. So when I’m feeling down, I get up, get ready, put an awesome outfit on, and start my day. If I don’t, for the rest of the day I’ll feel sorry for myself, and I’m over feeling that way. You should be too. You are strong, smart, generous, and loved by those around you. Who also miss you and want their loved one back. It may be hard now, but you’ll thank yourself in a couple months for getting out of that dark place. Always be grateful for the life you live, the good and the bad.

Anniversary Story

If everyone gave a little, we Just like every other illness out there, Cystic Fibrosis (CF) also would be one step closer to finding the cure. Some may think that has a walk to raise money for research. As of right now, CF has no walks can be sort of saddening becure. Each and every day we do get cause you could “dwell” on the fact closer and there is great medicine that you do have an illness. What out there that helps us significant- they don’t realize is that, this is a ly, but unfortunately they haven’t celebration of the life we are living.

We aren’t just walking in found the magic pill. a circle discussing our illness, but Every year around Mayinstead enjoying each other’s comAugust, Great Strides holds their annual walk against CF. Luckily, for pany and coming together to raise us they have many different loca- awareness for a great cause.

Not only do you get to meet tions. If you go to this link, http:// fightcf.cff.org/site/PageServer?pa- amazing people, but when the gename=strides_searchResults, and walk is over you get to pig out on put in your zip code, you are able the barbeque and enjoy the games that are provided. to find ones near you.

I, personally, have a team These walks are a great place to meet new people, reach called Jessica J Walker’s. Ever since out to those who have CF and truly I was little we have been raising see how much support we have for money and going on these walks yearly. You become a family with one another.

If you do not have a team, those that you see every year and you can easily find one by searching it’s truly a great community.

The Cystic Fibrosis Founfor teams. The great thing about dation is always coming up with the CF walks is that you are not required to raise a certain amount new ways to get the community of money in order to walk. Every involved when it comes to raising Money and awareness on the amount is truly appreciated and Illness. respected.

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If you decide to donate to the CF Foundation to become one step closer to a cure, you can go to this link, http://fightcf.cff.org/site/ PageServer?pagename=strides_ searchResults.

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