I Won’t Give Up

There is nothing either good or bad, but thinking makes it so.

William Shakespeare

Giving up is easy, persevering is not. I can’t even count all of the times that I have wanted to give up, to be done with this life that’s mine. But I never have, and I never will. Growing up is really hard, and doing it while chronically ill feels impossible sometimes. I was 18 when I started my crazy medical journey. A normal, healthy young adult doesn’t have to go to doctor’s appointments every 8 weeks, get blood taken every 6 weeks, and take 5 different prescription medications every single night. All of that alone could make any person want to give up and stop it all, but life doesn’t work that way, and I’ve had to figure that out as I have gone along. For a year and a half, I would come out of almost every rheumatologist appointment with a new diagnosis. I would absolutely dread going to the doctor because I didn’t know how it would end, most of the time I would end up crying in the car on the way home. It’s incredibly easy to give up when you know that there will be a new diagnosis at the end of the appointment. But I knew that I couldn’t give up because that would mean I was letting my illnesses win. I wanted to give up when certain medications didn’t work, I wanted to give up when I had to cancel plans, and I really wanted to give up when I ended up in the hospital last summer. You could say that I gave up a little bit here and there, but it’s not super easy to keep going when you’re severely depressed. If you looked into my life 6 months ago, it would have been easy to assume that I had given up, but deep inside I knew that there was still fight left in me. That’s why I got help, I can’t stress how important it is to seek help if you need it, it doesn’t make you weak, it makes you strong. After I was put on antidepressants and found a immunosuppressant that worked, my life started to come back together, and the feeling of wanting to give up came around less and less. I have to give a shoutout to my mom and my sister, they will never let me give up. They came to every horrible, scary, and depressing doctor’s appointment with me, and always looked at the positives while staying sympathetic to my feelings. They let me feel how I wanted, while still helping me see the positive. And I honestly think that they would pick me up, carry me around, and do whatever else was needed before they ever let me give up, and for that I will be forever grateful. My life is really hard, and that’s the truth. It’s messy, unconventional, unpredictable, painful, and scary. But it’s also beautiful. And it’s beautiful because of the people that I have around me, and the attitude that I try to keep (and please don’t think that I’m positive 24/7, I definitely have my moments, I’m only human). I’m terrified of becoming the chronically ill person that quits their job, alienates themselves from the people that they love, and stays home on the couch all day. Because if I became that person it means that I have given up on this life, and this life is not something to give up on. For all of the bad moments, there are 100 more good ones. So here’s to living life, even if I do it a little bit differently than others.

Vacationing While Chronically Ill

Dream in light years, challenge miles, walk step by step.

William Shakespeare

A few days ago, I got back from a 10 day vacation to the Bahamas and Florida. My entire family went for my grandparents 50th wedding anniversary. We did a 5 day cruise to Nassau and Freeport, and then we did 5 days in Florida visiting Disney, SeaWorld, and Discovery Cove. Since we started planning the trip back in January, I have been stressed out and anxious. I knew that my body could definitely handle the cruise, but I wasn’t so sure about the Florida part. I didn’t know if my joints would be able to handle all of the walking in Disney, and it took me a few weeks to make the decision. I wanted to go, I wanted to be able to make these memories with my family, I didn’t want all of the chronic illnesses that I have to take another part of my life away. I decided that I was going to do the entire trip, no matter what. In the weeks leading up to the vacation I talked to my doctor a lot. I wanted to make sure that I took all of the necessary steps to avoid a flare up. I’m not able to be on long term steroids (like Prednisone) because there is a chance that Scleroderma is laying dormant inside of me, and drugs like that can bring it out, which nobody wants. So, because of that, to avoid flare ups if I’m doing a lot of walking, I can take a Medrol Dose Pack of steroids, which lasts 5 days, and doesn’t give me any side effects, and it is a lifesaver. So my doctor prescribed that for me, along with a note for a wheelchair at Disney if needed, and I also brought knee braces. The cruise was so amazing, I had so much fun with all of my family (there was 25 of us). We did a photoshoot on the beach in Nassau, the pictures are so beautiful, and I’m so thankful to have them forever. I was very lucky to have felt so amazing for the entire cruise, my joints didn’t hurt, my fatigue wasn’t too bad, and my mental health was pretty good. Once we got to the hotel in Disney, I was very anxious. I was so afraid that I wasn’t going to be able to last the entire week, but I was so determined. In the 2 years that I’ve been living with all of my illnesses, I’ve had to miss a lot of stuff, and I didn’t want that to be the case this time. This was my vacation, and I was going to do it. Before we went to Disney I started the first day of my Medrol Dose Pack, and it was a great decision. Over 3 days we did Magic Kingdom from open to close, Animal Kingdom from open to close, and SeaWorld for most of the day. I was hurting bad every single day, from beginning to end, but it didn’t stop me. I went on every rollercoaster I could, stood on line for a long time so my little sister could meet princesses and characters, and walked the entire time. I would have to take 30 minutes breaks every couple of hours, but my family would wait for me every time. I had to stay in shaded areas whenever it was possible, but my sister literally pushed people out of the way to make sure I had somewhere safe. While we were in Magic Kingdom, I realized that exactly a year ago, I was in the hospital with the worst flare of my life. Six months ago, I was having suicidal thoughts, and just 3 months ago, I really thought that I wouldn’t be able to make it through the vacation. I have had to learn how to change a lot of things in my life because of my illnesses, I have had to make really hard decisions, and I have had to be a lot more grown up than a normal 20 year old girl. But all of the changes, decisions, break downs, appointments, tests, medications, acts of strength, courage, and determination led me here. I busted my butt through vacation, and I had the absolute best time of my life doing it. As always, I never would have made it without my family. I am so incredibly grateful for the amazing memories that we made. And I am pretty damn proud of myself.

A picture from our photoshoot in Nassau, Bahamas.

5 Things Not to Say to Someone With a Chronic Illness

There is no darkness, but ignorance.”

William Shakespeare
  1. “You don’t look sick.” There are so many things that are wrong with this. First of all, what does a sick person look like?? Yes, I look fine on the outside, but on the inside, my body is so sick and so tired. Just because I smile and laugh and do all of things a healthy person does, doesn’t mean that it didn’t take me a half an hour to get out of bed, get dressed, and get down the stairs in the morning because my arthritis pain is so bad. Just because I put on a cute outfit and went to work, doesn’t change the fact that I haven’t showered in 3 days because I just don’t have the energy (shoutout to dry shampoo, seriously it’s a lifesaver). You wouldn’t tell someone whose marriage is splitting up “you don’t look like you’re going through a divorce”, so please don’t do it to someone with a chronic illness, it’s incredibly hurtful.
  2. “Have you tried changing your diet?” Please stop. I could cut out sugar, dairy, carbs, gluten and anything else you could think of, and still be chronically ill. The way that I eat will never change the way that my immune system is. If you want to come over and cook me a healthy meal, be my guest. But if you think that after I eat it I’ll tell you I feel great, then I’m sorry to tell you that you’re going to be disappointed.
  3. “I understand, I’m tired too.” I hate to break it to you, but normal fatigue and the fatigue that comes with chronic illness are 2 incredibly different things. A healthy person is tired after a long day at work, or after taking care of their kids, but they aren’t tired right when they open their eyes after a full night’s sleep. I can sleep for 10 straight hours, and still have an overwhelming feeling of fatigue as soon as my eyes open. A shower makes me tired, grocery shopping makes me tired, honestly sitting on the couch and breathing makes me tired. Yes, you might be tired, but you don’t have fatigue on top of joint pain, medication side effects, and 3 autoimmune diseases. So please don’t tell me you understand how tired I am, because the truth is, you really have no idea.
  4. “You shouldn’t be on all of those medications.” I can’t tell you how many times someone has told me to do yoga and take vitamins instead of taking my prescription medications. If doing downward dog while taking a vitamin would take my pain away, I would do it all day everyday, but that’s not how the world works. If the holistic method works for you, awesome. But please don’t push it onto me, it took me 2 years to find the right combination of medication, and I’m not giving them up to take shots of turmeric while laying on a yoga mat.
  5. “Have you tried ___ insert: the Keto Diet, meditation, acupuncture, the new therapy I saw but actually know nothing about?” Odds are, I’ve tried it. Unless you’re a medical professional, or a fellow autoimmune disease warrior, don’t tell me what will make me feel good. I know you probably mean well and are trying to help, but just assume that someone with a chronic illness has tried every option available to them.

My Mental Health

It is not in the stars to hold our destiny but in ourselves.

William Shakespeare

I have struggled with my mental health for my entire life, my mom always said that I was born anxious. I honestly don’t know what it feels like to not be anxious, because I deal with anxiety in some capacity every single day. For the most part, I’ve been able to handle my anxiety, so I can get through the day, but everything changed so quickly. After I was diagnosed with Lupus, Crest, and MCTD, my anxiety went from bad to worse, and for the first time in my life, I was dealing with severe depression. For the entire summer and fall of 2017, right after my medical journey started, my anxiety was the worst it had ever been. The nights were the hardest for me. I was having a panic attack every single night, and my anxiety was making me so paranoid that I would sit at the top of the stairs in the middle of the night because I didn’t want to be alone in my room with my thoughts. And thank god for my mom, because on the nights I wasn’t sitting in the hallway, I would wake her up crying hysterically and end up sleeping in her bed. Finally after months of panic attacks and serious sleep deprivation, my mom convinced my doctor to put me on a sleep medication. Since starting that medication over a year ago, I haven’t woken up with a panic attack once, and I’m so incredibly grateful. After I got my anxiety under control, I realized how bad my depression was getting. I started going downhill in October of 2018, for 3 months I didn’t want to get out of bed in the morning, I didn’t smile anymore, let alone laugh at the things that I used to find funny, hockey didn’t make me happy anymore, and I was only showering once a week. The constant thought in my head was, I don’t know how I can live this way forever. I didn’t see a light at the end of the tunnel, even though everyone was telling me that it was there. In the middle of December, we were in Pennsylvania for a hockey tournament. I remember sitting at a table in the snack bar of a rink, across from my mom. I was crying so hard, telling her how bad I felt, and how I just wanted to be better. She promised me that I would get through this. At this point, my depression was so bad that it was making my physical health so much worse. My doctor finally decided it was time for me to see a psychiatrist, and I’m so thankful that I did. Since January, I’ve been on Zoloft, which is an antidepressant. It has honestly changed my life, and along with Methotrexate, it’s the reason I’m still here, they have 100% saved my life, and they are the reason why I can be a diver again. Because my mental health has gotten better, my physical health has gotten so much better as well. I have never felt this good. I want everyone who is suffering from depression to know that it does get better, and even though it doesn’t seem like it, there IS a light at the end of the tunnel, I’m living proof of it. When my mom and I were sitting at that snack bar table in December, she told me that I wouldn’t realize how bad I was until I felt better, and it is so true. I am honestly overwhelmed by how much better I feel, and I really can’t believe how bad it was. I’m so thankful for my family, I’m so thankful for my friends, and I’m so thankful for my doctors. It’s okay to not be okay, and it’s okay to need help. I promise that it does get better, because I wouldn’t be here today if it didn’t.

An Athlete Forever

The pain you feel today, is the strength you feel tomorrow.

Anonymous

I’ve been an athlete my whole life. I was a competitive gymnast for 8 years, and a competitive diver for 5 years. A back injury ended both of my careers way too soon. It’s taken me a long time to heal mentally and emotionally from my early retirements, which happened before I was ready. Gymnastics is a sport that you can never really go back to, so I chose to coach, and now I’m back in the gym. I have always wanted to go back to diving. I dove for 5 years, I was the high school Rookie of the Year, a Town of Hempstead champion, I had an undefeated season, and I was All-Conference. I had to stop right before my junior year of high school, because I fractured my back. I was upset, but I always had the thought of eventually going back in my head. When I was finally ready to start diving again, my crazy medical journey started. Everything was pushed aside, and it wasn’t thought about again for a long time. I went through a grieving process in the months after my diagnosis, I grieved the person that I was before all of this, and I grieved the thought of the person that I was supposed to become, the person that I was supposed to be in a life where I was healthy. I was so angry, so frustrated, so sad. I thought that I would never be myself again, and I felt that way for a really long time, then everything changed. When I was put on Methotrexate in September, I never expected the way that it would make me feel, the way that it would change my life for the better. It’s the reason that my symptoms are under control right now, and for that I will be forever grateful. One week ago, I went back to diving. I became a diver again, and more than that I became myself again. I never thought I would step onto a board again, and it was surreal standing up there. My dives weren’t the prettiest, but they were perfect to me. I was diving with Lupus, CREST Syndrome, and MCTD. I was so proud of myself, and so thankful for the support of my family, friends, coach, and fellow divers. I’m going to dive once a week, and hopefully the dives will get better, and the bruises on my legs from getting out of the pool will grow lighter. I’m often asked if I knew what I know now about how my life would turn out, would I go back and change it. In the months following my initial diagnosis, I would have 100% said yes, but today, I say no. I wouldn’t go back and change it, because it’s made me the person that I am today, and in an odd way, I’m thankful for that. I don’t think that I would have gotten back up on that diving board, if it wasn’t for the Lupus, CREST, and MCTD that made me strong, that made me want to prove to myself that I could do it. I don’t want to be the person that I thought I was supposed to be, because it wouldn’t be me. I’m strong because of the pain, sadness, and heartbreak I’ve felt over the last 2 years. And I will be an athlete forever, no matter what.

Being Chronically “Elle”

“Come what come may, time and the hour runs through the roughest day.”

William Shakespeare

My name is Eleanor Ciampi, and I’m 20 years old. In March of 2017, I was in a car accident. I was okay, a few bumps and bruises, a mark from my seatbelt, and a separated shoulder. It was nothing that I couldn’t heal from, or so I thought. Two months later in May, fully healed from the accident, my arm no longer in a sling, a whole new set of symptoms started. My joints hurt so bad I had trouble going up and down stairs, and I was so tired that I felt the intense urge to sleep all day, the kind of tired that you could feel in your bones. My mom made an appointment with my pediatrician for the end of the month. I remember sitting on the exam table, waiting for my doctor, I was hoping, praying that I would be okay, that I would be believed, that my joint pain was nothing more than the wear and tear from all my years as a competitive gymnast that has bothered me for half of my life. My doctor thought that I was just tired, or maybe I could be depressed. Because apparently depression is the only reason that someone could be in physical pain, according to the medical community. She sent me for blood work, just “a precaution” she said. My mom got a call a week later saying I had titers for Lupus, and that I needed to see a rheumatologist as soon as possible. I had to wait for 2 months for my appointment, the longest, scariest, most stressful 2 months of my life. I cried in the office of the rheumatologist, that first appointment. I was so scared, so vulnerable. I don’t know what I would have done without my mom and sister. A lot of blood work, tests, and a colonoscopy later, I was diagnosed with Lupus in October of 2017. I’m one of the lucky ones, as crazy as that sounds. Most people suffer for years before being diagnosed, the average time is 3-5 years. I was diagnosed in less than 6 months. I was so relieved, I was started on a simple immunosuppressant, and I felt so hopeful. In January of 2018, I was diagnosed with CREST Syndrome, a very rare autoimmune disease. I tried to stay positive, but the medicine wasn’t working, and I was losing hope quickly. In May of 2018, I was diagnosed with Mixed Connective Tissue Disease, another very rare autoimmune/connective tissue disease. The doctors kept telling me to give the medicine time, “you have to be patient” they said. It’s hard to be patient when your pain is affecting every single aspect of your life. In July 2018, I ended up in the hospital with the worst flare I have ever had. I’ve never felt more defeated than I did that day sitting in the hospital bed. I spent the entire month of July in a flare, with no answers from any doctor. In September I started a new immunosuppressant, Methotrexate, which is a chemo drug. The first month I felt horrible, the side effects were so bad I couldn’t pick my head up off of the couch. As my body became used to it, so did I. In the worst flares of my life, I wasn’t able to use my hands, the joints were so swollen. I couldn’t write, brush my hair, or get dressed without help. After 6 months of Methotrexate, my hands have never felt or looked better, and I’m truly lucky. It’s not easy to be chronically ill. It’s frustrating, scary, sad, and hard. But I will never let my illnesses win, I will never let them stop me. This is my journey, my messy, imperfect, different-from-everyone-else journey. This is my beautiful life, and I’m living it everyday chronically “elle”.

Purple is the color for Lupus awareness.