Kansas

July 24 2023

Macy Phillips

sclerounited_ppavrw Issue 2 Arts, Juvenile Scleroderma, Kansas, Pets

Kansas (United States)

MACY PHILLIPS

Scleroderma Stories Issue 2

Please tell us a little about yourself

My name is Macy Phillips, and I am 19 years old. I love to write (I actually have a blog), scrapbook, and journal. I live in Kansas with my boyfriend of almost three years, and I have two dogs named Chi Chi and Kane. My family and my partner are important to me.

Kane (left) and Chi-Chi (right), Macy’s two “fur children”

What led to your scleroderma diagnosis?

I was diagnosed with systemic scleroderma at a very young age. I was playing outside, and my mom noticed that my fingers, lips, and toes were turning blue. My mom quickly took me to our neighbor who was a nurse, and she recommended that we should see a specialist. They diagnosed me with Raynaud’s, and I was positive for scleroderma.

When I was young, what I understood about scleroderma was that I had to be cautious of the cold, and I had a disease which would last my entire life. I believe about a year passed between my initial Raynaud’s diagnosis and the positive result for scleroderma. I was diagnosed at seven and went for testing when I was 6.

I was around 12 when a spot started to harden on my back. I started to experience joint and muscle pain, issues with my stomach, chronic fatigue, and inflammation in my limbs, and acid reflux.

Macy with her mom, dad, and two of her three younger brothers celebrating her 18th birthday

How did this change your ability to interact with friends or attend school?

When I was young, I couldn’t play outside in the cold months with my peers due to my Raynaud’s. I fell behind, and many of my friends stopped talking to me. I was in pain and felt exhausted all the time, which then prevented me from attending school. I also experienced symptoms such as nausea and headaches. I had a tough time at school. Many of my teachers though I skipped and my school made it very hard for me to work.

I had a 504 plan but unfortunately none of my teachers followed it. My peers and teachers bullied me. I stopped going to school at 16 and pulled myself out with my parents permission. I have tried to go through a GED program, but I have not finished yet nor gone back since. I was recently diagnosed with pretty severe ADHD, which explains my hardships with learning new materials.

Have you been able to work?

I have only been able to work part time, but currently I cannot work at all. Working has worsened my scleroderma symptoms. I worked in retail, and I had to get a doctor note to prevent getting reprimanded for calling in sick. Some of my bosses were understanding of my limitations while others weren’t.

Has your difficulty with working or medical expenses caused any financial hardship for you or your family?

When I was first diagnosed, my mom was about $200,000 in debt because of my testing. A month after I turned 18, I had to go to the ER, and our insurance was cut off, so I was immediately $1,500 dollars in debt. Being sick is a financial burden, and coming from a low-income family, I heavily rely on state insurance. I still pay out of pocket because they won’t cover my pain medication.

Financially, I worry about being unable to afford life saving care, being unable to get medications that are essential, or being unable to afford doctors appointments for my check ups. My family hasn’t made any adjustments to prepare for potential future medical expenses. To be totally honest, we financially never have been able to do so. My boyfriend and I are moving into a new place and are looking at options of career pathways and buying a home.

Macy and her mom

How much medicine do you take, and how often do you go to the doctor’s?

At one point I was taking a lot of medications, now I only take about three medications. And I visit my specialist once or twice a year. I am currently in a remission state, but before being in a remission state, I went every three months for check ups and labs.

Was there a certain point where you started to actively learn about scleroderma?

When I was about 14 years old, I started learning more about scleroderma. I became active in the community at 16 and started joining Facebook groups designated for connecting with others with scleroderma. It helped me realize that younger adults with scleroderma seem to be a rarity and inspired me to make my own blog.

Could you please tell us a little more about your blog?

I have been blogging on and off for about 4 years. Blogging has helped me immensely. It makes me feel less alone. I blog about myself, my struggle, and accomplishments with chronic illnesses. I also like to make informational pieces for other people. For example, I wrote a blog about coping mechanisms. I have also written a blog about how to tell your job about your illness.

I’ve been working on a new blog, and it is called Living Compromised. And I will be publishing it this upcoming Sunday.

What is the hardest part of living with scleroderma?

The hardest part with living scleroderma is that it could get worse any time. My boyfriend and my dogs have helped me to get through hard times.

When I was young, my mom helped a lot. She never let me feel anything but normal. If I could not have ice cream, she didn’t. If I could not go outside, we played inside. Even If I had to wear a mask, she even wore one.

Macy with her boyfriend of three years

Have you ever met any other children with scleroderma?

I met with Wyatt Wright in 2015. His mom runs his Facebook page, Wyatt the Warrior. My dad did a car show and decided to dedicate the funds raised to The Scleroderma Foundation. Both of us met there with our families. Even though he is a couple years younger than me, I was able to connect with him and felt less alone.

Macy with her dad

What are your goals or dreams for the future?

My dream is to own a home within the next 3-5 years, get a stable job, try having children, and thrive. Honestly, having children is important to me, but I have a plethora of other options when it comes to having kids. I overcome these worries by reminding myself of the overwhelming support I have from my family and close friends.

Macy with her brother and sister

Have you had to make any special adjustments due to the coronavirus?

I just try to be respectful of other people and self isolate. If I go out, I will wear a mask and wash my hands. The routine is normal to me as someone who has lived with a compromised immune system for a long time.

What advice do you have for those with scleroderma or other chronic illnesses?

My advice is to know your limits. It is okay that you cannot work like your healthy coworkers. It is okay that your house is not spotless constantly. It is okay if you cannot go to parties every weekend with your friends.

You are not a burden, and your life matters just as much as healthy people’s.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

July 24 2023

Wyatt Wright

sclerounited_ppavrw Issue 2 Fitness, Juvenile Scleroderma, Kansas, Male, Sports

Kansas (United States)

WYATT WRIGHT

Scleroderma Stories Issue 2

Wyatt with Bob Saget at the Scleroderma Research Foundation’s Cool Comedy Hot Cuisine event

The Scleroderma and Fibrotic Diseases Foundation interviewed Wyatt together with his mother, Candace. Candace runs the Facebook page @wyattwrightthewarrior to share updates about Wyatt’s disease and life as well as news from the Wyatt The Warrior Foundation.

Please tell us a little about yourself

WYATT: I’m thirteen years old. We live in Kansas, and we love our family. My family and friends help me out through the day. They kind of distract me and keep my mind off of everything that’s going on.

CANDACE: We live out in the country, so he spends a lot of his time outside with friends and family. We spend a lot of time in our community giving back. Helping others is what we do a lot of. Wyatt is very involved with all of that. This Friday, we’ll be taking a little over 500 gifts and toys to our local hospital to donate, so he’s really involved in that way.

Wyatt and his family volunteer and raise money for veterans’ Honor Flights

What led to your scleroderma diagnosis?

WYATT: I was diagnosed when I was eight years old. I got hit with a pitch on my ankle. My mom went to go look at it, and she found a spot on my leg. I tried taking it off and washing it off, but it didn’t go away. We took it to the doctor, and they said I had a bunch of different things, so we went and got a different opinion. Then, they sent us to Kansas City, which is where the doctors found out that I had scleroderma.

I really didn’t understand anything about scleroderma when I was diagnosed. I had no idea what it was.

CANDACE: It was one of those things where I had to get the education that I needed before I could educate him. Once he got the education, it was a lot to take in. He took a long time to make sense of everything. For a while, we had a lot of bad days.

We sat down and realized that we can either live in this world depressed and upset, or we can pick up the pieces and make a change in the world. Ultimately, we chose to turn our negatives to positives. We realized many people have it worse than we do. The only way to find something positive in the disease itself was to help other people, and that is what we did.

It was an upsetting time for our whole family. We didn’t know what our lives were going to be like, and we had to figure out how to deal with it. We still have bad days here and there today, but now when we feel down, we get up and find something or someway to help others. It makes us feel better too. We’ve been known to even stop by the McDonald’s drive-thru and pay for the car behind us, and that really helps our bad days turn into good ones

How have your symptoms changed since your diagnosis?

CANDACE: Wyatt’s got seven total diagnoses. It started off with his linear scleroderma in his knees and his leg, where it goes clear up his ankle and all the way up his right side. His skin was really hard there, so he ended up having two surgeries on his knee at that time. He fell down a hill and ended up with Tourette’s and migraines. He has a positive RNP*, which hasn’t been totally activated yet. Wyatt then got gastroparesis, which took about two years to get diagnosed.
*Positive RNP: consistent with connective tissue diseases.

He just got one diagnosis after another. His life has changed a lot. He sleeps a lot more now and wears out quickly. It has been life altering, but we’ve learned to live with it.

WYATT: I think the hardest symptom for me to deal with would be the tightening of my skin, because I can’t do a whole lot of sports and running with my skin like that.

Wyatt’s family ziplining in Punta Cana

Could you please talk about your knee surgery experience?

WYATT: It was hard because I couldn’t walk and could only stay sitting and watch.

CANDACE: They had to invasively go in and deal with the artery behind his knee. For over four weeks after his surgery, he couldn’t play sports. He had trouble at school as well. The next time he had to have it done, they put him in a straight leg brace for over 6 weeks. He couldn’t do anything at all. It sidelined him for a while and took him out of all the things he could and wanted to do. He couldn’t hang out with his friends like he wanted to. It caused him a lot of pain.

WYATT: I mainly just spent time with my friends and family.

CANDACE: His friends came over a lot to play games and cards. I’ll tell you a really funny story! Wyatt was in his wheelchair because he wasn’t able to walk around. The neighbor’s kid had tied Wyatt’s wheelchair up to his bicycle, and there goes Wyatt down the street in his wheelchair!

He found ways to still interact – not the safest, but he found ways!

Wyatt fishing with his nephew

What other medications or treatments have you done?

WYATT: I’ve had my pacemaker surgery, CellCept, and methotrexate to try and help.

CANDACE: He actually takes 15 pills each day, which includes his CellCept and methotrexate for his scleroderma. For his migraines, he takes amitriptyline, and for his tics, he takes guanfacine. Even with his gastric pacemaker, Wyatt still gets really nauseous at times, so he doesn’t eat a lot and doesn’t gain a lot of weight. He takes a lot of nausea medication. Wyatt’s on scopolamine, the patch for anti-nausea. He wears one of those everyday to control his nausea. If he doesn’t have one of those on, then it’s a nightmare. He uses a lot of zofran and phenergan and reglan as well to do that. His lung function is not completely where we would like it to be, so he does steroid inhalers as well. He does Flovent for that. He has a whole string of meds.

WYATT: My chemo shot, the methotrexate, is my least favorite medication. I usually don’t feel well for the next day or two, and I’m not able to do much. I just kind of have to lay around in bed and try to get my stuff back together.

CANDACE: He has some major anxiety when it comes to getting ready to take his injection. He’s usually throwing up right before or after the shot, because his anxiety will get to him. For some reason, the next day is usually complete hell for him. This last one, he actually threw up for 2 days straight after the shot. It just kept coming at him. He hates that thing.

We actually changed from where you draw it up in your own syringe, and we started doing the pen style, where it looks like an EpiPen. When we switched to those, it did help his anxiety some, but it didn’t get rid of it all.

Which medications have been particularly helpful?

CANDACE: He likes the zofran and phenergan for his nausea. I will say that the methotrexate did make a change in his skin tightness. We saw him regain some of the elasticity in his skin.

He used to not get out of bed because he hurt so bad he couldn’t get up, walk, or do anything. His hands hurt, so he couldn’t write. When they put him on CellCept, he was actually able to get up. Now, he can write and move. It changed his life in that way. At one point, we didn’t know what to do with him, because he just laid in bed. When he started CellCept, he got up, started playing, going outside, and being a kid again.

Do you have a lot of scleroderma-related medical expenses?

CANDACE: Yes. We have good insurance, and that’s the nice thing that helps us out with it. At the beginning of the year, it costs about $2500-3000 to buy our meds for the first couple months before our insurance kicks in. We also have a lot of expenses from traveling. For his pacemaker, we have to go to Columbus, Ohio. That’s a 15 hour drive, so it’s expensive to travel that way.

He just got out of the hospital, but it wasn’t so much scleroderma related. They didn’t know that he got Rocky Mountain Spotted Fever. He spent three days in our hospital here, then they life-flighted him to Kansas City, where he spent another 2-3 days. At the time, our rheumatologist was trying to figure out what was going on with him. I haven’t seen those bills, but I was told just the flight itself is about $15,000. By the end of the year, we’ve usually spent about $25,000. The most we’ve ever spent in a year is about $30,000 out of our own pocket.

Wyatt and his family at the production of Fuller House with Bob Saget

What is the scariest part of living with scleroderma?

WYATT: The scariest part of living with scleroderma is not knowing my future.

CANDACE: For our family, and even when I talk to other families, it’s not knowing what the future holds for them. Without a cure or any type of knowledge, we’re just sitting here with all this money going to research with nothing coming out of it right now.And that makes it really difficult. There have been times when Wyatt has been really sick. There was even a time when he straight out asked us, “am I going to die?”

Now that he’s becoming a teenager, he doesn’t always talk about those things as much as he used to. I think he uses his friends more for that now, but he doesn’t know the certainty of what his life’s going to bring. Is he going to have a normal life and be able to get married, have children, and live on his own? Or will he eventually become disabled and have to have somebody? Those are “talks” that we’ve all had around our house.

Has scleroderma affected your school life?

WYATT: I missed a lot of school because of my appointments with doctors and trying to figure everything out. In the middle of fifth grade, I moved to online schooling, so that I could work according to my time and health.

Online schooling is kind of nice, because you can get everything done and then do whatever you want to throughout the day. Or, if you’re not feeling well, you can wait until tomorrow to do your assignments.

Do your friends understand what you’re going through?

WYATT: Some of them do, and then sometimes you have to tell them and then they finally understand.

CANDACE: He has some pretty good friends that are good about trying to understand. He’s also really good about educating them, so they know what’s going on with him. Along the way, he’s had some that haven’t been so great, but for the most part, he has really good friends, especially his baseball team, they’re really supportive of him.

Wyatt’s baseball team supporting Wyatt, who was in the hospital, by writing his number on their arms

How else has scleroderma affected your life?

WYATT: Well, I’ve been through a deal where I haven’t been able to go places or do things because I hadn’t been feeling very well.

CANDACE: He loves to hunt, and he’s missed out on duck hunting twice now. Once because we were tied up at the Mayo Clinic doing testing and another time because he was tied up getting his gastric pacemaker. He’s missed out on baseball season at times when his knees take him out for those weeks, and he hasn’t been able to play his baseball season out.

I will say he deals with it pretty good. When he doesn’t get to do something or is unable to go, he does a pretty good job of dealing with it – probably better than most kids would.

What are your hobbies and interests?

WYATT: I like to play baseball, hang out with friends, and go hunting and fishing as well. I like sports because I get to play them with my friends. Sometimes, I can’t do those things when I’m not feeling too well. I play baseball year round, but nothing’s really changed, I still try and keep up with everyone.

CANDACE: He had to quit playing basketball, wrestling, and football because of scleroderma. Now, the only sport that he actually plays is baseball. We made some adjustments along the way for baseball, but it doesn’t have the same physical impact as wrestling and football. With his gastric pacemaker, he can’t take hits to the stomach, which is why he can’t play the other sports. Baseball has become his love because he can run and hit without disturbing the pacemaker.

Do you have any goals or dreams for the future?

WYATT: My goal is to stay mobile and not tighten up or lock up.

CANDACE: He’s got those hopes and dreams of living a normal life, you know, go to college, have a normal life, succeed in those things along the way. I think he has a lot of the normal dreams that a lot of our children want anyways. One thing that he’s done really well is he’s always advocating for scleroderma. I think he’ll continue trying to find that cure and advocating for that cure throughout his lifetime as well.

WYATT: One particularly memorable event that I spoke at was the Cool Comedy, Hot Cuisine event.

CANDACE: At the event, he spoke with Bob Saget. There were a lot of comedians, and Wyatt got to hang out and be friends with them. They also surprised him with a message! Wyatt has also spoken at local events, but he was very excited to travel to Los Angeles and speak with the celebrities.

Wyatt and his family at the 2019 Cool Comedy, Hot cuisine event

How have you connected with other scleroderma patients?

CANDACE: We follow a lot of Facebook pages, and I talk with a lot of families. I try to stay big in the group. When Wyatt was diagnosed, we started going to the conferences. That’s how we met our friends – the ones who are here from Michigan right now. We met them almost six years ago at our first conference. We’ve now become “family-like” together.

Right after that, we started our Facebook page to communicate with other people. We wanted to meet as many people as we could out there and be as involved as we could. After starting our Facebook page, I ended up making a foundation, a 501(c)(3), to raise money. We send people to conferences every year. We usually scholarship anywhere from one to three families a year. We help with medical expenses too. We’re fortunate that my husband has a good enough job and insurance that we can handle our own expenses, but we help other families with medications, food, or things like that. One of our friends is in Rochester, New York, at the Mayo Clinic right now. We gave them travel money to help them through that because they were driving out there.

We do a lot of that through our page, trying to help others. It’s kind of why that page got started. It also communicated us with so many of the others, between the Scleroderma Foundation, to the Research foundation, to so many others.

There’s even a Parent page that started now, two actually, where you have to be a parent of a scleroderma patient to get on those pages. We’re involved with both of those pages, we follow them and try to watch them to see if there’s someone we can reach out to either meet them, be a part of them, or help them out

A photo from when the Wyatt the Warrior Foundation received a grant to help other families

How have you connected with other scleroderma patients?

CANDACE: That would have been the year he was diagnosed, I think six years ago in Nashville. It had been a month since Wyatt was diagnosed. I was researching online, and there was a conference going on. So, Wyatt and I loaded up to go.

After the conference, we went back to our room and Wyatt was like, “these people are just like me!” It was nice to meet people that were just like us and understood us. The moms understood where I was coming from, and the kids understood where Wyatt was coming from. It was like we were living the same life.

WYATT: It was so shocking, and seeing all of those people made me know that it was not going to be easy.

CANDACE: I think it was shocking to him because he didn’t know what to expect. He seemed to meet people that were crippled, so he had no idea what was in store for us. He was very emotionally shaken.

Wyatt, do you have any advice for any people or kids with scleroderma?

WYATT: Keep fighting and don’t let it take over.

CANDACE: He has a saying that he used when we were in LA which is, “I encourage all of you to never give in, never give up, and to keep fighting till the end. We will find a cure.” We got T-shirts made with this saying.

Candace, do you have any advice for other parents?

CANDACE: Keep fighting, keep going, and don’t let it take you down. Never get out of the fight. Never take no as an answer. There is always an answer, and you can never get enough opinions. We’re the only ones that can fight for our children, and we are the only people they have. If we don’t fight for them, nobody will. I encourage all parents to fight for their kids, go to conferences to learn more, and find people around them that can be their support systems.

Also give time to yourself, and do things that you need as well.

July 24 2023

Jennifer Addington

sclerounited_ppavrw Issue 1 Kansas, Lupus, Mother, United States

Kansas City, Kansas (United States)

JENNIFER ADDINGTON

Scleroderma Stories Issue 1

Please introduce yourself

My name is Jennifer. I am 49 years old. I was diagnosed with lupus at age 18 and began developing scleroderma in 2008. I am married with two kids: a 23-year-old son and an 18-year-old daughter who is a freshman in college. After divorcing for three and a half years around our 10th anniversary, my husband and I have been happily remarried for 10 years and counting.

We live in Kansas, not too far from Kansas City. I enjoy decorating for events, home decor, artsy stuff, photography, social media, inspiring people, and my family and church. I also love to travel.

Jennifer and her family at Christmas in 2016

Jennifer and her family at Christmas in 2019

What symptoms did you have at the time of diagnosis?

I had major swelling of my limbs and tightness of my skin. My belly was hard, and the skin on my neck, face, chest, and hands was hardening. On both hands, my fingers curled in. I ended up with digital ulcers for the first time when my Raynaud’s got out of control. I had extreme itching all over as well as difficulty swallowing. I would wake up at night with acid shooting out of my throat. My mouth shrunk, and my face changed, which really affected my self-esteem. I also experienced shortness of breath. I’m sure I can think of more with time.

I felt terrified. My doctor said I was gravely ill, and we were praying that I wouldn’t die. I felt alone and isolated because this disease is so rare. It felt like I had zero control over what was happening.

When sending in this photo, Jennifer said it “showed how my mouth has shrunk, therefore showing much more teeth. I also kind of have the beak nose now.”

What happened after you were diagnosed?

I ended up having to take several months off due to severe illness and gangrene in two fingers. I had worked in the Mental Health field for 13 or so years as an office manager, but then I was failing.

My doctor advised me to quit working and spend time with my family. I spent 3 years or so on the couch sleeping, pretty much. But, now I am working part-time at my church so I can have social interaction and a reason to get out of bed.

Jennifer and her husband at the 1998 Capture The Spirit Gala – at the time, Jennifer was 27 and had a two-year-old son. She was very sick and taking Methotrexate but did not have scleroderma yet.

How has scleroderma affected you mentally and physically?

It has been very difficult. I had mostly learned to cope with lupus, but scleroderma brought about physical changes that also caused mental anguish. I lack the confidence I once had, for numerous reasons; one being the way I look, and the other being that I often cannot do what my mind wants to do because I don’t have it in me physically. Stress of any kind is bad for me.

I am much more protective of my time and energy. When I know I need rest, I rest, for the most part. I know in advance that the extra stuff I do will cause stress and induce flares, so I try to be selective about what I put my energy towards.

Having an extra disease to deal with has definitely slowed me down, but it has also made me appreciate each day that I wake up even more. Scleroderma has so many complications that come with it that I often fear that I won’t wake up. But, my faith and my support system help a lot.