Issue 5

September 23 2023

Cheryl Iddon

sclerounited_ppavrw Issue 5 England, Parent, United Kingdom

Warrington, Chesire (England)

CHERYL IDDON

Scleroderma Stories Issue 5

Please introduce yourself

My name is Cheryl. I’m 50 years old, nearly 51. I’m remarried, and I’ve got three children who are 25, 21, and 16 respectively. My youngest still lives with me. I used to have my own business. It was called “The Neat Freak” because I’m obsessed with organization and tidiness.

I live in Warrington, in Cheshire. We’ve lived here in this house now for about two and a half years. Before that, we used to live near Manchester Airport. My husband and I have been together for 10 years.

Could you please share what led to your diagnosis?

It was about two and a half years ago. I used to be a fitness instructor and holistic therapist, and because of that, I’ve always been into sports and working out. Then suddenly COVID struck, and everything was really strange. Towards the end of COVID, in December, I started noticing when I was doing burpees and things, that my wrists and my fingers were starting to get really really achy. I had noticed a couple of months before that I had tingling in my fingers and that they were blue, so I was given Raynaud’s medication.

So then the swelling started in my hands and fingers, and I just couldn’t do my exercises anymore. Meanwhile, I was still working. I had a couple of clients in the medical profession. One of them said, “You know, your ankle shouldn’t be like that.” What was happening was that my ankles were swelling up and my socks were getting so tight that my ankles were spilling over my socks and my trainers! It was really unattractive, because I’m actually quite tall and slim naturally. I thought, “What’s going on here?” She said “you need to get that looked at.” I thought, “Yeah… no problem,” and carried on. I went on with my life.

We moved houses two weeks before Christmas. Literally the day after we moved, the swelling got worse. It was moving up my legs, and my fingers were like sausages. So, my husband dropped me off at the hospital; because of COVID, it was like a drop and run. They gave me a steroid injection, said they didn’t know what it was, and sent me away. I carried on working, and the symptoms were just getting worse. My husband took me to the hospital again and pretty much the same thing happened.

One of my clients suggested I should try somewhere else, because I might just come across someone that knows a bit more, so I packed a bag and pretended I was visiting a friend in another area, and got dropped at the hospital again.

There was a young registrar there, and when she was examining me, she said, “Oh! This looks a bit like scleroderma!” She said what I could do was see someone called Professor Herricks, who’s the head of the scleroderma society in the north of England. She said that I should try to get a referral.

I had a telephone consultation (not with her – it was with somebody at my local hospital, Salford Royal), which was not very effective. They said, “Well, you really need to be expedited,” and I was expedited to see Professor Herricks. From my first trip to the hospital in December, I finally saw her in May of the following year. That was when she diagnosed me. It was all really unreal, to be honest, because I didn’t know what was wrong with me. I didn’t think it was anything serious.

She took us into a side room after she had done all of my skin score tests and said, “You’ve got diffuse cutaneous systemic sclerosis.” I was like, “… and…?” She said she was really sorry, and I was just like, “What does that mean? Am I going to die?” She said that they would see what they could do for me, but it would be a long process. She said that they might need to put me on a remission drug, but that it would take three months to start working.

My husband and I were in bits, because we just didn’t know what we were dealing with at all. I didn’t really want to look it up online, but I did – didn’t tell my husband.

After that diagnosis, they kept me in the hospital for a week and gave me loads of tests. I was put on the drug but experienced really bad pains in my legs – so bad that I couldn’t walk. I had a special chair that reclined and lifted, I had a frame on the toilet and a raised toilet seat, walking aids… And it wasn’t seeming to get a lot better.

In December of that same year, I saw the professor again, and she said, “Look, I think we’re going to have to go down the stem cell replacement route.” Again, I didn’t know what this consisted of. I thought they were going to take my bone marrow out of my bones with a needle… had no idea.

Could you please tell us more about your stem cell replacement journey?

The process started the following May. They gave me chemotherapy and took my stem cells, but then, they said they couldn’t continue my treatment to the next phase because I have breast implants, and they had noticed on one of the scans that one of them had ruptured. They said I would have to get that removed before continuing any further. I thought, “Oh god, what am I going to do now?”

I went to the NHS, and they said, “Yes, it’s ruptured, but we don’t know when we can do it. And if we do it, we can only take one out – not both. And we can’t replace them.” I thought “Oh god – what with everything else, I don’t want to lose them as well!”

So I ended up going private, literally six weeks after I had the first part of my stem cell transplant. They said I’d have to wait another six weeks before going onto the next phase.In September, they gave me more chemotherapy as well as something called cyclophosphamide. I didn’t cope with that, and I ended up having heart failure. I was in a special unit for about two and a half weeks, but I recovered quite well and quickly. I think I was in the hospital for about seven weeks in total. I actually had my stem cells put back three days before I had heart failure.

At the minute, I’m going to a hospital every two weeks to have blood results, and they’ve just put me back on my remission drug because my hands are still progressing. My fingers are solid, and they don’t move. So, I’m back on my “wonder drug” mycophenolate, and that’s where I’m up to at the minute!

My symptoms were getting massively worse until I started my stem cell replacement. I was struggling with my knees, my arms, my hands, and my face as well. Oh my god, my face was so tight that when I stretched my mouth open, it didn’t go very far. It also stretched my eyes down, so I looked like I had a stroke.

But after my treatment, the chemotherapy did wonders for my skin and loosened it. I could actually separate my fingers, which I can’t do now. I could also see between my toes. That was great for a few weeks, but that kind of went out the window.

I went to see a consultant about a month ago, and they could see that I’m beginning to gather a bit of skin on my hands now. And my stomach was solid – it was like a bulbous solidness, but you can actually pinch a bit of fat now. I never thought I’d be so excited to pinch fat! My face is also looser, so I’m really pleased about that.

For now they’re not doing any more treatment to see what the results are like. As of now my skin is looser, not loads but it is looser and my movement is much better. So I’m doing well.

Cheryl going through her first stem cell transplant

Has scleroderma caused a financial burden?

I had my own successful business with a lot of followers and a five-month waiting list. However, I had to fold my business about two years ago because I could no longer get on and off the floor, and I couldn’t pull myself up. When you’re working with people to organize cupboards and wardrobes, being able to use your hands is key. I was struggling to fold things and do what I wanted to do. I just wasn’t well enough.

I’ve not worked since. I’m classed as disabled now because of my hands and mobility – although my mobility has improved over the last few months, thanks to my personal trainer. They’ve been working wonders for my strength. Obviously, they can’t do much for my mobility, but the strength is good. She’s been amazing because I had excruciating pain in my shoulders and arm – I couldn’t move my arms above my head – but now I can.

Monetary wise, I have not had any incoming money, but luckily my husband has a good job, and he’s been supporting me. I’m really fortunate because I live in the UK, so I do not have to pay for any NHS treatment. Everything I’ve had has cost nothing to me at all, apart from my personal trainer that I pay for once a week. It’s not a lot, and everything else has been free.

Could you please tell us more about The Neat Freak?

Prior to Neat Freak, I worked for the prison service for 25 years. I used to work in a prison doing administration. That’s where I met my husband.

A couple of years before I left the prison service, we had a new company take over the department that I worked in. They gave me a sideways move inside the prison, working directly with prisoners. I had no training for that role, and it scared me to death. I worked in a female establishment; the women were more calculated, and they never forget. I knew it wasn’t working for me.

I used to do a little bit of cleaning as a way to earn an extra bit of money – just one afternoon each week for a lady. She suggested that I could use my organizing skills to help others and showed me another organizer in the UK. The things that she was doing were things that I just did naturally, like reorganizing cupboards, reorganizing kitchens to make them work better, and reorganizing and removing unnecessary items from wardrobes (my passion). I also helped them with admin… anything the client needed to do to make their lives better is what I could do, while saving them time.

A lot of my clients were doctors and professional people who didn’t have time to manage their homes. On the other hand, a lot of clients were people who didn’t have money as well. Sometimes, I worked with hoarders who were struggling to get rid of stuff. Also, people that had mental illnesses that were not conducive to their day-to-day lives and could not manage things – they would have OCD or phobias. So I would go in with them to help them do what they needed to do.

Cheryl ran her own business called “The Neat Freak”

What are your hobbies or interests?

I’m still a born organizer, but I can’t do it as much these days since I can’t work for people. I’m always organizing my home though — I just can’t help it. I’ve got OCD, so I put it to good use!

I used to love running and working out, but unfortunately, I am unable to do that now. However, I am planning to start swimming. Now that I have more mobility in my upper body, I think I’ll be able to stay afloat. I fancy doing that. I also love reading and love eating out. I’ve also got my husband and son to look after, so I’m being a good housewife at the minute.

How has scleroderma affected your ability to run and work out?

Scleroderma has massively affected my ability to stay active. I do engage in physical activity where possible. I have to be careful about my mobility, as I do tend to experience falls, so I have a walking stick. I can’t do aerobics or things that are high-impact, but I can cycle on a static bike (my hands can’t use the break on a regular bike).

I have my personal trainer and do some walking with my stick, but I’m much less active than before. It knocked my confidence, to be honest with you.

Cheryl just finished her first chemotherapy treatment!

Have you connected with any other people with scleroderma?

Not many. I go for blood monitoring every two weeks, but you don’t know who in the waiting room is like yourself. You don’t want to ask people, “what are you in for?” They could just have rheumatoid arthritis or something. I attended a scleroderma conference recently, the first one I’ve ever been to in the UK, and I actually met a couple of other ladies that have a similar form of scleroderma as me, which is really nice because you feel kind of on your own and isolated sometimes. And it was really clear that they felt on their own as well. There’s way less people in the UK as compared to America, so the chances of finding others aren’t that high.

There’s nothing really in our area for other people like us. So I’m organizing with the hospital to try and sort out a room to maybe meet and invite other patients once a month for a coffee morning, you know, just to chat about themselves and how they’re feeling. And I think it might make people feel a little bit more positive.

I am on a couple of scleroderma sites online, but I have stopped looking to be honest, because it was a bit frightening. Some people post pictures that are quite grim. It was getting to be a bit too much for me. To know less is sometimes better.

How do you lift yourself up from these hits to your confidence?

I’ve always been a glass-half-full, positive person anyways. I believe there is always a way to turn a negative situation into a positive one. There’s always a good. I set daily targets for myself. I used to do this mostly with things that I needed to do with clients, but now it’s things for myself. Sometimes, they’re really simple things, just to keep me motivated – like picking up the dog food in the morning, doing household chores, going for a walk with the dog… There are always loads of things to be done, and crossing things off my to-do list always makes me happy.

Everyone always says I’m really positive. You can’t really dwell on the negative, can you really? You just have to pick yourself up and get on with it! That’s what I’m doing – making the most of life.

Have your relationships with loved ones changed?

To be honest, I don’t know that it’s changed because I stay mostly positive all the time. You’d look at me and think there’s nothing wrong with me, because I’m that insistent that everything continues to stay normal.

I’m not a person who can say no, and people will still ask me for help, and I just say “Alright, I’ll look into that for you! I’ve still got at least two fingers, so I can use my keyboard.” So yeah, they haven’t really changed.

If anything, I’ve grown closer to my sister and my parents. Being an organizer as well, I’ve got a good relationship with my neighbors. We’ve got the coronation happening in the UK next week, and I’ve organized a street party with them.

At the start, people didn’t understand or know how to react to my diagnosis – but I wouldn’t say that they treated me any differently. Everything is great.

I’m not very good at asking for help; I’d rather do it myself. My husband gets so frustrated at that, thinking, “Would you just ask?” For example, I’d rather try to open a bottle myself before asking for help. I think it’s best for my mindset as well as my family’s mindset to see me cracking on with it!

Cheryl and her husband on vacation in Venice! After having contracted COVID-19 multiple times over the past few years, Cheryl finally feels healthy enough to travel again!

Do you have any short or long-term goals? Anything interesting that you’re planning to do?

Yeah! We live only about an hour away from the sea. We have a place in North Wales called the Great Orme, and it has a steep copper hill. There are cable cars and a tram that take you up to the top, where there’s a big restaurant. I walked up there a few years ago with my husband and son. It’s a tough one! We were just doing it for fitness.

A few years ago, my husband, my son, and I walked up there for fitness purposes. It was challenging. I told my husband that I’m going to walk up there again. Even if it means using a walking stick, I’m going to get up there. It’s my challenge to myself. At the end of that, I’ll get a great big cream cake at the restaurant!

Other than that I’m planning to do a skydive on the 24th of September to raise money and awareness for SRUK, Scleroderma & Raynaud’s UK. My best friend said she’d do it with me, which is really exciting. So far, we’ve raised about 3,000 pounds. I’m really excited. I’m hoping it can give others like me a little bit of enthusiasm to do things in life, because there’s no reason we can’t.

Apart from that, my husband’s a singer at night. We were at an event last week, and they asked if they could do a fundraiser for me as well as the charity. So at the moment, we’re just organizing lots of different professional singers to come in and they’re going to raise all the money. Anything donated and raised from the event goes directly to the charity as well. I’ve invited those two women that I met at the scleroderma conference and said that if they want to bring friends and family, they could by all means.

What got you inspired to give skydiving a go?

So I was on a flight back from Prague earlier in the year, because I’ve just been given the all clear to fly. So this year, we’ve gone a bit mad and done a lot of traveling. I was looking out the window and thinking to myself how serene it looks out there, and then I wondered what it would feel like just to be floating, how nice it would be. And at that point I thought to myself “I should do a skydive”. I mentioned it to a friend and she jumped at the chance to do it with me. Within about three days, it was organized. I’ve got a GoFundMe page, which is linked directly to my page if people want to sponsor.

It’s all about raising awareness. When I was diagnosed, nobody had heard of scleroderma. Even now with the fundraising this morning, the club that said they would do it put out a call for help, and one of the guys that did so said it was for cancer. People always assume when you’ve got a terminal illness that it’s basically cancer, with the hair falling out and everything. It’d be really nice for people to actually recognise scleroderma and its symptoms, to understand what it is and that they’re not alone in dealing with it.

Cheryl will be skydiving with her best friend to raise money in aid of Scleroderma & Raynaud’s UK and every donation will help. Donate at https://gofund.me/6d7692f1

Is there anything you’ve learned over time that you wish you knew before your diagnosis?

I’ve learned that life is short, and it’s important to embrace every moment. I don’t know how many years I have left, but I hope I have lots! These drugs that they are giving me are great, and things are changing all the time. New things are always coming out. Since I’m the first person with my diagnosis to have stem cell replacement therapy, I think I’m being watched more by the medical profession to see what’s happening. I’ve been helping them with their studies as well. I’ve been doing nail fold capillary testing, hot and cold therapy on my hands, measurements of my Raynaud’s… I’ve been helping them lots. I think they’ve got more of a vested interest in me!

My main skill from the past few years is definitely just never giving up. Anything is possible, you just have to push yourself and keep a positive mental attitude.

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

September 22 2023

Alayna Roberts

sclerounited_ppavrw Issue 5 Fitness, Illinois, United States

Chicago, Illinois (United States)

ALAYNA ROBERTS

Scleroderma Stories Issue 5

Please introduce yourself

My name is Alayna Roberts. I live in Chicago, Illinois. I’m 37 years old, and I’ve been living with scleroderma since 2015. I live with my cat and dog (my little family), and they’re super important to me. I work as a data scientist. I love sports, fitness, and being active.

How were you diagnosed with scleroderma?

It all started back in 2015 with my hands. I had an ‘attack’ where my fingers turned white and numb, and it was incredibly painful. It got to the point where my right index finger started turning black. Doctors told me, “Oh, you’ll probably have to amputate it. We don’t know what this is.” I went to like nine different doctors before one told me, “Oh, this is Raynauds. No, you’re not going to have to amputate your finger. We can treat you.”

Shortly after that, in June of 2015, I got the diagnosis of undifferentiated connective tissue disease, UCDT. For eight years I’d known about this, but I always thought that everything that I had was pointing to Scleroderma. I had Raynaud’s, GERD, and had started to get some hyper pigmentation on my face and some joint pain as well.

So in 2021, I finally made an appointment at the Scleroderma Clinic at Northwestern in downtown Chicago and saw Dr. Correia. It was actually his last day at the Clinic, and he was like “Yep, you have scleroderma.” And so I’ve been a part of that clinic ever since.

Have your symptoms progressed since then?

So far, it hasn’t progressed to any organ involvement. Right now I have limited systemic sclerosis, but my doctors said that can change any time. They’ve seen people switch from limited to diffuse. Thankfully, it’s still limited. I’m really only dealing with Raynaud’s and GERD. And then every so often I’ll get aches, pains, flares, and joint pain. I feel like I’ve been pretty lucky. And now, being at the clinic, I get checkups every six months or every year for heart and lungs such as echocardiograms, PFTs, etc. so I feel like I’m in good hands if I do start to see some organ involvement.

Also, thanks to all the lung tests they do, I found out that I have asthma. I had no idea. I just thought I was breathing heavier while working out like everyone does. I’ve gone my whole life thinking it was normal, and they’re like, “Oh, yeah… You have asthma, though,” so it’s kind of funny that a lot of times with one chronic illness, there’s others you have along with it.

How have you learned more about the condition?

When I got diagnosed with the UCTD in 2015, I’d looked at where that falls with autoimmune diseases. There’s the big three rheumatological diseases: scleroderma, rheumatoid arthritis, and lupus. UCTD has bits and pieces from all of them. So I learned a little bit, and then I kind of stopped because it was all too scary for me at the time, just reading about all the horrible things that can happen. I’ve also got general anxiety disorder. That’s why sometimes it’s hard to read about this stuff because then I can put myself in a panic attack, thinking about my future and all the potential horrible things that could come with it. I was trying to remind myself that I just have UCTD, the prognosis was pretty good, and as long as it did not progress, I was in a good spot.

Over the years, I thought to myself that my symptoms just scream scleroderma, even if it’s just a limited form. When I got the official diagnosis, I started researching more. I found this one great Powerpoint online that I share with people. It’s a very high level overview of the disease, and it goes into just enough detail to explain to any layperson what it is.

Being a data scientist, data, numbers, graphs and charts is really how my brain works. I haven’t read in-depth medical studies, but if I see something high level I’ll read it. I’ll try to understand what the data is saying. I signed up for a scleroderma newsletter where they share all kinds of things – the latest research or just someone’s experience and how they’re handling it. I feel like I’ve become more knowledgeable in the last two or three years because of it.

What’s the hardest symptom to deal with?

Depending on the time of year (it impacts me probably from October through May or June), the Raynaud’s is pretty difficult to deal with, and I always have to wear gloves. I have portable hand warmers and air activated chemical hand warmers. It’s a lot of work to manage and expensive, because none of the stuff is covered by health insurance. It’s a pain in the butt — or more accurately, in the fingers.

People don’t realize how PAINFUL the Raynaud’s is or how dangerous it can be if you don’t take action immediately. And it doesn’t matter where you live; I still get attacks in the summer due to air conditioning, for example.

I feel like when GERD gets out of control, it absolutely destroys my life. Right now it’s okay. But it’s kind of progressed to where it’s not just reflux during the day, but it’s happening at night as well. I wake up choking and having severe burning in my throat and esophagus at three in the morning. Super painful.

If I had to pick which symptom was worst, I’d say it was that. I also have difficulty swallowing pills. Sometimes they get stuck and then I have to throw up. I’ve gone from being able to swallow several pills at a time, to only one pill at a time. It makes mornings very difficult.

There’s other things too, like when I was really dealing with joint pain and getting more frequent flares, that was pretty debilitating to just have your whole body hurt and have a low-grade fever and feeling like you were hit by a semi-truck. It made just moving impossible. Thankfully, it’s been pretty under control for two or three years now.

What medications have you tried?

So many. I’d say any pill I have to take is my least favorite, because swallowing is sometimes a problem with esophageal dysmotility in scleroderma. I’m not on immunosuppressants yet, so I think that probably makes things a little more tolerable.

Right now, it’s pretty much just the antacids. I’m on two of them: omeprazole and famotidine. I used to take Dexilant, and that was way better. I was on one pill a day for seven or eight years, and then I lost my job. Now, with my current job, they offer absolutely no coverage on any proton pump inhibitors, which are the antacid medicine. What I’m taking now are the cheapest ones that I can be on.

The Dexilent is like $300 a month, even after the manufacturer coupon. I just can’t afford that. It’s a really big bummer, and I think part of the reason why things have been a little worse in the last few years with the GERD is that there was just one pill that did the job, and it did it really well. And now I can’t afford to take it.

I’m on atenolol for Postural Tachycardia Syndrome (PoTS). I’ve had that since I was 20. Atenolol really does the trick for me with that illness. I think I just have a very mild form of it. There’s other people I know that really suffer with it, and that’s difficult to see. As low of a dose as it is, I can’t function without it. I also have PCOS, and that’s been a lot of fun… I’m on two medications for that: metformin and contrave – that’s supposed to help with insulin resistance and any binge eating issues that might come from the illness.

I’ve had anxiety disorder since I was a kid. I’ve been on cymbalta specifically for almost three years, and it has been amazing for me. It also works twofold because cymbalta – it doesn’t do this for everyone – but for some people, it helps with pain management. And prior to taking it, I was diagnosed with fibromyalgia because of all the pain I was in, with the flares and constant joint pain and all this stuff. It’s insane how much less pain I’ve been in. My anxiety is being so well controlled. Like I hate flying, but I just went to Florida last weekend, and that was probably the most calm I’ve ever been on a flight.

Then at night, I take trazodone to help with some sleep issues. I have sleep apnea and periodic limb movement. It sucks to take all those pills, but it’s still manageable right now.

Has scleroderma affected your job?

I work from home, actually. My company has an office here in Chicago and before the pandemic, they had a hybrid system already. We’re encouraged to go into the office, but it doesn’t have to be set days or once or twice a week. We just show up every so often and just have to be involved if there’s in person meetings. But – I’ve been saying this a lot in the last few months – working from home has been the best thing for my health that I could have ever gotten.

In my previous job (prior to the pandemic), I was taking public transit downtown from where I live. It could be anywhere from a 40 minute to an hour commute depending on the train, and I’d do that 5 days a week. Being in the office was so incredibly difficult at times; dealing with a Raynaud’s attack, or having a really bad GERD episode where I’d need to go to the bathroom and throw up. Now being at home, if something does happen, I have all the tools available to manage it.

My mental health has improved because I’m not worried about those things as much. As difficult as it was to adjust the first year or so working from home, I just can’t imagine myself being back in an office ever. Sure like I said, going once in a while is fine, like I went last Wednesday. Or like today, I’m going to the Cubs game with my coworkers. But I just feel like I’m in the best place I’ve been in years with my health with WFH.

Have you communicated with your workplace about your scleroderma?

I really didn’t tell anyone at work because Illinois is an at-will state, so your employer can let you go for any reason. It could be for health, but they don’t have to tell you. Even if it’s illegal, they can just make up some excuse. I’m pretty sure that’s why I got let go from my previous job that I was at when I got diagnosed with UCTD 8 years ago.

I don’t have unlimited financial resources to lose a job or to not work. Giving too much information and someone using it against you has always been really scary to think about, so I wasn’t really open about it at work.

At the time in 2019, I kind of had to be open about it because I was asking for ADA accommodations, like with the Raynaud’s or with the GERD. I needed to have them provide a heater or a heated blanket for the office. It’s just so painful, having constant Raynaud’s attacks because it’s a corporate office. It’s a big building downtown, and the AC is blasting year-round. That’s kind of when I had to disclose more of my health stuff, but I’ve really been trying to keep it close to the chest.

I’ve been a little more open with this job working for my current employer. I haven’t disclosed a diagnosis, but my boss and other people know that I do have a chronic illness and that I’m constantly at doctor’s appointments. I’m very used to constant physical therapy, and nobody seems to mind. It could be part of the work from home culture, where as long as you get your work done and attend the meetings you need to be at, it doesn’t matter when you’re doing your work or if you’re staying up late to do it.

I’m very open about my health in the other areas of my life, with my family and friends. I’ll share it on social media, because I think that knowledge is power, and it also makes me feel less alone when I share. I found some people in online communities as well.

It’s kind of weird to be so open in every other area of my life and just to be so afraid of sharing at work, because like I said, I feel like I got let go from my previous job because of my health, and the ramifications of that are really bad. You lose your job, you lose your health insurance. You lose your health insurance, your health goes down the toilet when you already have a chronic health issue. I feel like if I continued to be open about my health at my current job, they’d be very accepting, but because of my past experience I’m very hesitant to do so.

Do you ever think that you’ll move away from Chicago?

No, not really. A combination of work, family, and health-related reasons are what’s keeping me here.

I grew up in northern Illinois, so Chicago has always been a part of my life. My parents lived closer to the city when they were younger. I had grandparents and great grandparents who lived and grew up in the city. To me, it feels like it’s always been home, even when I didn’t live here. And I’ve lived here almost 10 years.

I also went to the University of Illinois at Champaign-Urbana, so most people from school ended up in Chicago. The scleroderma clinic is at Northwestern here in the city, having some of the best doctors in the world and all these resources available. It’s more than just my home. It’s my place for my future, too. This is where my life is. I couldn’t imagine living anywhere else.

What do you enjoy doing in your free time?

I love sports, fitness and being active. That is a huge part of my life. It’s always been a part of my life. I come from a very active and athletic family. I had way more activities going on pre-pandemic. I did competitive powerlifting, triathlons, and marathons. I played sports all year-round.

How did the pandemic affect your sports and fitness hobbies?

During the pandemic, not being able to go to the gym was really hard, because I had to be really careful with my condition and wait for the vaccine. It hurt me mentally and physically.

I look back on it, and I’m like, “I could never do that again, being alone, sedentary, and scared for my health.” I’m trying to get back into the swing of things to the pre-pandemic times with all my activities.

What sports and fitness activities do you enjoy?

During the pandemic, I was only playing softball because it was pretty safe to be outside. I’ve kind of branched out in the summer. I’m on three or four softball teams, I’m picking up beach volleyball again, I started playing indoor volleyball again this year, and then I started doing ballet, which I did growing up for 16 years. I miss being a little more creative and graceful, and not always playing sports, so I’ve been doing that since January, and it’s been amazing and I can’t believe how much my body remembers – it’s like riding a bike.

I still lift pretty regularly (a few times a week), but it’s not as high of a priority as it was when I was competitively powerlifting. But I can always go back to it, since I have the skills required. It takes a lot out of your body playing softball as an adult, so I want to focus on that for a while before my knees can’t handle it anymore.

I swim. I bike. I run. I hate running, but I do it anyway. I bike everywhere in the warm months (Raynaud’s makes this nearly impossible for seven to eight months of the year). I’ve done two triathlons and I’d like to do another. I also enjoy going to sporting events or to Cubs games or going to football games in the fall.

When I was lifting (and doing crossfit), I did one Olympic lifting meet, but I hurt my shoulder training for that, and it’s too difficult on the knees. I’ve done four official powerlifting meets. My last one was in 2019 which I trained for by myself; back squat was 259, for deadlift I got 303 lbs. It was exciting to hit over 300. As for bench, I didn’t hit a PR at a meet, but my PR in the gym is like 150 or 160, I can’t remember. Sadly, I’m not even close to any of those right now… still strong though. It’s just a matter of determination getting back to that stuff. I know I can do it.

Staying active really helps me when things get tough. For people looking from the outside in, it would almost seem counterintuitive to be active. Like, “Oh, aren’t you in pain?” But once you stop being active, the pain is worse in my experience.

What else helps you get through difficult times?

Whenever things got painful and I needed to stay at home, I’d play video games. I have Lego sets. I do puzzles; I love doing crossword puzzles. I haven’t read a ton of books in a while… the last book I read was a book about Ebola in December, 2019. And then the pandemic happened, and I was like, “Oh, maybe I shouldn’t read a book again.” That was bad timing!

There’s also talking to people. Like I said, being very open about my health in my personal life is very helpful. I’ve been seeing my therapist for nine years now, I think. I think therapy helps a lot. Getting it out in the open instead of bottling it up really helps when things are bad.

Then, of course, friends and family. I feel like my family is very supportive and understanding of all my health issues. My friends have been pretty great and a good support network as well. When I was diagnosed in 2015, both my parents were there for me. My mom was on the phone with doctor’s offices, trying to get me in places. I didn’t have insurance, so she negotiated prices and stuff. She really just can step up when anything health related happens.

I actually made a really good friend that I met in the suburbs outside of Chicago. We went and grabbed dinner like a year ago. She doesn’t have scleroderma, but she has PoTS and other stuff. It felt so great to make this connection with someone and to be able to meet them in person. Just to be like, “I get it when you’re feeling this way.” We just have a ton in common, just like more nerdy stuff. It’s like I found someone I can really relate to. I feel very lucky to have all the people and pets in my life.

Has scleroderma stopped you from pursuing anything?

I don’t think there’s been a ton that I ever had to miss out on for my health. The only thing I can really think of is anything winter-related, like going skiing and stuff. I have to be beyond prepared, I have hand warmers, rechargeable ones, or the air activated ones. I’ve also got a heated foot sole thing to go into boots. Sometimes the GERD can be limiting in what kind of meals or foods I can eat, but I always find alternatives.

Then there’s outings and stuff I’ve had to turn down. My friends would say, “Hey! We’re going out for drinks. You want to come?” and I might have been in a flare where I just felt sick, my whole body hurt, and just didn’t feel like leaving the couch after work and that sucked — but I felt like it was always the right decision. Listen to your body. If you don’t, you’re gonna feel even worse. There hasn’t been anything super memorable that I had to say no to. It’s just been about choosing what to do and managing expectations.

What are your goals or dreams for the future?

I’d love to be able to buy a condo someday and would really like to have my own space. I’d also like to meet someone too, but dating is hard as it is, and with a chronic illness that’s always a concern. Like am I going to meet a guy who understands all of this and is accepting of it?

That would be a nice thing in my future, but that’s also something I’m learning to be okay without. Maybe it’s not in the cards for me. As it stands with my pets and my family and my friends, it’s pretty great, and it’s okay if finding a romantic partner doesn’t work out.

I’ve got a whole bucket list of things that I’d like to do. One of the things that had popped up in my mind recently that I had thought about pre-pandemic was this event called RAGBRAI, where you bike across the State of Iowa in the summertime. You start from the west end and ride all the way to the East End. That’s on my list.

I’ve been dying to go to Greece for years, and I’d like to take my mom as well, because we have Greek heritage and want to see if we can trace that when we’re over there, and just enjoy the country and everything it has to offer. I think that it would require more planning, but that’s definitely a goal or dream in the next maybe five years.

Is there anything that worries you moving forward?

I’m in a lot of medical debt. When I got diagnosed, I was in between jobs. This was in 2015. I left a job that was very toxic. I worked as a manufacturing engineer at the time. I just quit because I was like, “I can’t do this mentally.” I was having panic attacks every day. It’s not like I was expecting to be diagnosed with a chronic illness all of a sudden.

Before I knew it, I had a Raynaud’s attack, and then my finger started turning black. Everything was out of pocket, going to all these specialists. I had to go to the ER a few times. All this really set me back.

And at the time, I’d been doing Lyft and Uber just to make ends meet but had to stop because there was some medication I was on making me really dizzy. They were trying to treat the necrosis that was on my right index finger. I was so dizzy I could barely get out of bed and felt like passing out, and couldn’t operate heavy machinery (my car) safely.

Having experienced all this, it scares me what my future looks like, if I can’t come to a place where I can get all this debt under control, who knows what might happen. I know that a lot of people declare bankruptcy because of medical debt, and I’ve honestly considered it.

If I lose my job and then I can’t work… People go into poverty because of these things. Disability in this country is not a life of luxury; a lot of disabled people are homeless and you can’t have any more than $2,000 of any kind of asset otherwise you lose your disability “benefits”.

I need to do everything that I can, everything that’s available to me to try to be able to get ahead of this and start being able to think of how to plan my financial future if the worst were to happen while I’m gainfully employed, while I have health insurance, and while I can financially support myself. I know a lot of my friends who have chronic health illnesses feel the same way.

One horrible flare, any disease progression, one emergency, and next thing you know your whole life is ruined. It’s very stressful and disheartening to know that there is no support from your own government and fellow citizens, too.

Could you please tell us about your experience with online groups?

I’m in two or three Facebook groups. I’m not super active in them though. Reading some of these people’s stories, things they’ve shared or questions they’ve asked, it kind of might put me down a rabbit hole of really anxious, scared thinking. Maybe if I’m feeling some new symptom, I’d go to see if it’s been posted about in the facebook groups and ask, “has anyone ever felt this way before?” and interact that way.

Also, I feel like I’m in the minority in these support groups. I’m single, in my mid thirties, unmarried, and I don’t want kids. A lot of people there talk about their marital relationships and kids, and how difficult it is to manage. It sounds exhausting, and I really feel for them, but I can’t relate. Being single and alone is a different struggle than having a family. I follow a lot of scleroderma-based accounts on Instagram too. That’s how this whole interview got set up. I also found that I’ve been following a lot more people my age who have scleroderma on Instagram, and it seems easier to relate to them on that platform compared to Facebook.

What is something you’ve learned that you wish you knew when you were diagnosed?

Probably that my diagnosis, my health, and all this stuff is not a moral failing. Yeah, it sucks, but it’s not a punishment for anything. You just gotta find the best ways to cope and live with it. It’s not like “You ate pizza the other day! Oh, you deserve it” or “Well, you’re not drinking kale smoothies. That’s why you got this.” I see this kind of thinking a lot in the fitness community, which is unfortunate. I didn’t do anything wrong to have PCOS or PoTS or scleroderma. I remember being in pain as a kid and the doctors had no idea what was wrong, and no child deserves health problems — so why should I feel that way as an adult? The best thing I can do for myself is to keep working through and keep fighting for myself.

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

I’d probably say the same thing. Your health issues aren’t a moral failing. Never take no as an answer from a doctor. If a doctor isn’t listening to you, find another one. You are not obligated to stay with any healthcare provider. Even if they’re the best in their field, it’d be better to get someone who listens to you and is willing to do all the tests, all the work with you. Maybe they’re not as knowledgeable, but they’re willing to learn and treat you with respect and kindness.

The most priceless thing you can do is to be an advocate for yourself; if you have people, friends or family, who are also advocates with you, then that’s great too. Then you can share some of that burden. Just be nice to yourself. Be gentle with yourself. Do what you need to do to get through each day and that day only. Don’t worry about what’s coming up next, because there’s nothing you can do while you’re suffering or in a flare or whatever is going on. You have to just focus on getting through that day, and then look forward to the next one.

September 22 2023

Aneila Vargas

sclerounited_ppavrw Issue 5 Art, Florida, Puerto Rico, United States

Clermont, Florida (United States)

ANEILA VARGAS

Scleroderma Stories Issue 5

Please introduce yourself

My name is Aneila Vargas Pagán. I am 28 years old. I was born in Puerto Rico, but I moved to Florida almost 6 years ago. In May, I graduated with a bachelor’s degree in Health Services Administration. I also love to draw!

Aneila’s friends flew from Puerto Rico to Miami to spend her birthday with her! They visited Superblue Miami Museum together.

Could you please tell us about your journey toward being diagnosed?

The first symptom I noticed was two instances of skin discoloration — one on my hand and one on my body. I noticed the skin on my fingers would break, peel, and bleed. Because I worked as a barista at the time, I thought it was because of the exposure to chemicals or because of the hot and cold temperature difference. Not thinking much of it, I just started applying creams at night and wearing gloves.

Then, I noticed I was sleepier than usual and that I was developing patches on my face that resembled rough crocodile skin. At this point, my family told me to see a doctor, but their diagnosis was that these problems were stemming from me being overweight. I ended up visiting three primary care centers. After some tests on my liver, the third doctor diagnosed me with fatty liver disease.

The diagnosis didn’t solve any of the problems I was feeling, and at this point, my hands also became extremely bony, so I finally visited a rheumatologist. She sent me for a test in California that checks for 60 different types of autoimmune diseases, which is finally when I got my scleroderma diagnosis. This July, it will have been three years.

Alongside scleroderma, my doctors diagnosed me with polymyositis, which, broadly, is irritation and inflammation of the muscles. This explained a lot of the pain and fatigue I was feeling. It also was causing the fatty liver misdiagnosis; my muscles and sinuses were inflamed, not my liver!

What treatments and medications have you tried? What has worked for you?

I am currently on Cellcept. It is normally prescribed to patients who undergo organ transplants, which is why I was initially nervous to start taking it. It lowers the patient’s immune system, which was tough for me since I got COVID-19 four times during the height of the pandemic.

I take oral steroids for my polymyositis. It controls cortisol levels and slows down muscle inflammation, but its side effects include weight gain, especially around the face, creating the term “Moon Face.”

I also take Plaquenil to regulate the pain and inflammation in my hands, which is caused by arthritis. Finally, I was diagnosed with Raynaud’s syndrome, but living in Florida has kept it under control. I was prescribed Amlodipine, which is a medication for heart conditions, since it deals primarily with blood flow, but I have not had to take it.

Sometimes, changes in my diet or environment can cause a flare-up in my symptoms, so my doctor will raise or lower my doses accordingly. Overall, my treatment plan has definitely improved my symptoms. The medication for polymyositis, especially, is really effective. Sometimes, there are days when I forget about the pain.

Aneila’s mom and younger brother visited her during Christmas.

What lifestyle changes have you made?

Being from Puerto Rico, I used to practically live on the beach. The high sun exposure, however, means I can no longer go because CellCept heightens my risk of skin cancer. I don’t think I’ve gone in almost two years. I have also modified my diet. I steer clear of gluten, since it seems to aggravate my symptoms. Being in large public spaces is also difficult because I am much more exposed and prone to get ill from someone who may just have a small cough.

I have also started to lift weights — nothing crazy— to keep my muscles active, especially because of my polymyositis diagnosis. Basic things like opening bottles, as well as larger things like contributing in the house, have become harder. I often have to communicate to my partner that I am low on energy, which is why I struggle with these things.

How did you manage your mental health and emotions following your diagnosis?

During the first year, I was very emotional. I was especially angry at myself, and I would deprive myself of joy. I felt like I didn’t deserve to enjoy life anymore or that by making time for others, I would only hurt them more in the long term if I passed away. Over time, I have had to learn how to enjoy life and simply be more caring towards myself.

My drawings posted on my Instagram page also represent exactly how I am feeling at that moment. It’s like satire. I’m making fun of myself, which becomes an outlet for my feelings. For example, one drawing was a before and after of using one of the oral steroid medications that made me gain a lot of weight, while other drawings are more fun or encouraging, which reflects a time when I felt great about myself.

The logo for Aneila’s instagram page, @agirlwithscleroderma

What changes to your mindset has your diagnosis brought about?

My initial diagnosis was actually quite defeating. I struggled to find support groups. There was information, such as on WebMD pages, but no one to connect with, which made me feel worse. I felt a sense of desperation to meet someone else that would understand being diagnosed with something that most people have never even heard about.

This prompted me to create the Instagram page called @agirlwithscleroderma. I already love to draw and hadn’t been able to for a long time, so the initiative pushed me to find a creative outlet. After posting my first few drawings, random people would stumble across the page, giving me organic chances to connect with them.

The first year was mostly a grieving process. I thought a lot about things I could do in the past that are inconceivable now or about the side effects of my medications, which limited my perspective significantly. Ultimately, I leaned into my family and my partner to get an extra push. After speaking with other scleroderma patients, however, I feel really lucky that I feel relatively good on a daily basis. So many people that I have met cannot properly manage their symptoms or were diagnosed years after the onset of their symptoms. Being grateful for where I am has helped me keep my positive mindset.

How have you connected with the online scleroderma community?

A woman named Lauren from the Scleroderma Foundation reached out to me after seeing my art on the Instagram page. Speaking to her was my first real chance to share my story. She connected me to the Foundation’s therapists and counselors; different Facebook groups, such as for caregivers or for diagnosed patients; and the Foundation’s Florida chapter, which held Zoom meetings every once in a while.

Tell us more about your Instagram page, @agirlwithscleroderma!

When I first created the page, I never intended to show my face. You’ll see there aren’t any pictures of me posted. I think I was coming from a place of shame. I didn’t look like many other scleroderma patients. I figured I would never have to show my face if my drawings could convey how I was feeling. Now, I am leaning towards showing my face on the page because I am more aware of the fact that the aggressive nature of the disease means it affects every patient differently.

Then, people who were not diagnosed but were experiencing key symptoms started contacting me. It was quite overwhelming. They would ask, “Who did you see? What medications are you on? Which ones should I take?” This desperation that others felt was exactly what I initially felt. For them, finding someone experiencing what they were going through was a foot in the door towards diagnosis.

I have a lot of Spanish-speaking followers, which I take great pride in. The content is quite limited for this community, so I can play a small role by translating information for patients and families.

Aneila uses social media to raise awareness about scleroderma, provide information, and share her journey with the disease.

What are your hobbies and interests? How did your diagnosis affect your level of engagement with these?

I love reading, watching a whole variety of shows, all kinds of drawing and related art, and growing plants. I’m a total homebody! When it comes to art, I’ll do more than just drawings. I can edit pictures, create clay sculptures or objects, and a lot more!

Because scleroderma affected my hands, I thought that with the resulting arthritis, I wouldn’t be able to use my hands in the same way as before. Luckily for me, however, the medication kicked in early in my treatment plan, which means my hands have been in pretty good shape so far. Some days, there is more general pain, but I can compensate for that by taking a break from the art for some time until I feel strong enough to continue.

Although Aneila loves physical books, she also enjoys reading on her Kindle. She annotates her favorite quotes and parts of the books.

How has your diagnosis affected your relationships with loved ones?

My cousin was the first person who told me to go see a doctor after I started showing symptoms, but my entire family has been incredibly supportive, despite most of them living in Puerto Rico. When I had to get my surgery, for example, and I mentioned it in the family group chat, everyone said “WE’RE getting the surgery.” That level of support is unreal.

I am also engaged to my partner of five years, who I met at the law firm we both work at. He has definitely been a rock for me. I feel like something that is really important but isn’t often talked about is how a diagnosis can affect your partner. He basically went through similar stages of grief that I did. It’s very challenging for them to understand that their partner may not always look and feel their healthiest. He has always picked me up when I cannot do the things I normally love to.

I didn’t realize this before, but my diagnosis affects my ability to get pregnant. I am currently considered high-risk. I am able to conceive, but I would need to be off medications for 3 months before trying, and then the entire pregnancy as well as breastfeeding journey. It would put a huge weight on my health.

Aneila and Jerome are engaged! Jerome surprised Aneila with a beach proposal in Sarasota, FL because he knows how beaches hold a special place in Aneila’s heart!

What about your ability to continue with school/work?

I work from home, which has been one of the biggest advantages throughout my journey following my diagnosis. If I don’t feel good one morning, I can work from the bed, be there all day to rest, and still get all my work done.

Being busy with school helped distract me from how I felt about my diagnosis. At the time, I was going through my summer semester, and I didn’t stop to process or acknowledge my feelings. In the moment, I was able to grieve that way, although in hindsight that may not have been the best.

Often, I was really exhausted. I had work, online classes, and homework, along with helping around the house and spending time with my partner. It felt like everyone else had a 24-hour day, while mine was much shorter. I would get tired much quicker.

What advice do you have for other scleroderma patients?

Often, patients don’t have proper information regarding providers or centers they can go to for help. They assume they have to go to places approved by the National Scleroderma Foundation. My current doctor, however, is not listed under that designation, and my care plan is truly the best it can be for me.

People who are on waiting lists for appointments at the Mayo Clinic or for months out from the status quo cannot afford to take the risk of waiting that long. I try to direct patients to regular rheumatologists while they maintain their positions on these waitlists so they are still at least being regularly seen in the meantime. Another hack for me has been Cost Plus Drugs, which Mark Cuban from Shark Tank created! It has helped me afford the medications I am currently on. All I need is a prescription, and appropriate refills are taken care of.

Aneila and her closest cousins Valeria, Leslie, and Vanessa, who she calls her sisters, celebrating Leslie’s miracle baby.