Confidence

Self love, my liege, is not so vile a sin, as self neglecting.

William Shakespeare

Let’s talk about being confident. It’s easy for some, and very hard for others. I think it’s somewhere in between for me. My confidence and how I felt about myself changed a lot after I was diagnosed. If you’re not chronically ill, you probably won’t understand what I’m going to say next, but I want to tell you how I feel. I hate my body. Not for how it looks, I’m very comfortable in my own skin, but for what it cannot be. It’s not a body that can get down the stairs easily, it’s not the body that isn’t swollen 24/7, and it’s not the body with the immune system that doesn’t attack itself. It’s a body that in a lot of ways is broken. But it’s my body, and I have to love and accept it, no matter how hard it is to do. And I’ve gotten better at it, thanks to therapy, and support from my family and doctors. I wish there was a handbook about living with chronic illnesses, but there’s not, so I just have to figure things out on my own, as I go along. Being open about my life and my struggles has helped me so much with my confidence. I honestly have no shame about what I’m going through when it comes to talking about it (example: I’m not embarrassed to let everyone know that I had to get a steroid shot in my butt cheek yesterday, here’s hoping it helps my severe joint pain). Obviously no one knows what goes on behind closed doors and in my head, I struggle a lot, but I have to be honest about my journey. Something that helps me feel confident is dressing nice when I leave the house. I love fashion, and it’s something that’s helped me express myself. Whenever I go to work, dinners, hockey games, I always try to look nice. But when I’m in my house it’s pajamas and messy buns (life is all about balance right??). My life motto at this point is “fake it till you make it”, how I look on the outside is usually the complete opposite of what I feel like on the inside, but that’s okay. Something else I struggle with is that I’m terrified to date. I don’t put myself out there because I’m afraid of how guys will react when I tell them about my health problems. I know I’m probably being a little bit dramatic, but it’s how I feel. I saw my psychiatrist yesterday and he told me, “you face looks so bright today, you don’t look like that depressed girl that came into my office a year ago”, so I guess I have that going for me, in a weird way it’s definitely a confidence boost. At the end of the day, I struggle with my confidence, and accepting the way that my body is. I try to overcome small things everyday, and I think I do a pretty good job at it, but there’s room for improvement no matter what it is. I’m especially thankful for my sister Anabelle in all of this confidence stuff. She tells me everyday that I look like “a whole snack”, I still don’t know if I believe it all of the time, but I appreciate the effort. I want everybody who struggles with their confidence, no matter the reason, to know that you are beautiful, and special, and worthy of all the good things in this world. I’m thankful that I wake up everyday, even in a body that I feel is broken, because it gets me through every single day no matter what. In this life you have to be thankful for the small things, I know I am.

Hard Days

Our doubts are traitors and make us lose the good we oft might win, by fearing to attempt.

William Shakespeare

I always try to write positive posts, but today is a little bit different. I made a promise to myself before I started this blog, that I would write about every single part of my journey, whether it be good or bad. So, with that being said, today I want to talk about the last couple of days, and what they’ve looked like for me. I am in a lupus flare. It’s my first flare since I ended up in the hospital with one in July of 2018, so you could say that I’ve been lucky to go so long without one. Since Thursday, I’ve been running a fever, been severely tired, and my joints hurt so bad. I’ve gotten through my days the best that I can. I worked Friday and Saturday, and celebrated my Nonna’s 90th birthday. But I did all that while feeling horrible. It’s a very hard place to be in, because I don’t want to miss out on the important things that I need to do, but I also have to listen to my body, as frustrating as that is. I’m so lucky to have an amazing doctor, I messaged her yesterday and asked for a Medrol dose pack, which is a short term steroid. She literally sent it to my pharmacy within 15 minutes, and I’m so thankful to have a doctor who listens to me, and takes what I’m saying seriously. I’m starting to slowly feel better, but it hasn’t been easy. Last night I practically cried myself to sleep because my legs hurt so bad, I literally could not even have my comforter touching them. But today I was able to get out and run a couple of errands (thank you steroids). I just want everyone to know how hard it is. I’m not looking for sympathy, it just helps to write how I’m feeling out, and to share it with everyone. I know that I don’t look sick, I have an invisible illness, and I’m grateful that people can’t see how sick I actually am, but at the same time I kind of wish they could. I wish that people could see how much pain I’m in every single day, flaring or not. When I’m in a flare, like right now, it’s obvious how swollen my joints are, how prominent my face rash is, and how run down my body looks, and I kind of don’t feel so invisible anymore. But then I go back to feeling good, and nobody will ever see how I’m feeling on the inside. I really do consider myself lucky though, I’m on an incredible medication that allows me to feel somewhat normal on a day to day basis. I’m able to work 4 jobs, and I love every single one of them. But again, working 4 jobs and going nonstop for the past month put me into a flare. So you can see how conflicted my feelings are about everything. Flaring for the past couple of days has also taken a toll on my mental health. These days, considering where my mental health was year ago, are so much better. But going into a flare makes you rethink a lot of stuff, and to be completely honest I feel really depressed. And I know that in a week I’ll feel better, it’s just really hard right now. I think that I still grieve the person that I was before I got sick. Most of the time, I don’t think about it, but when I feel bad, it’s like the wound gets ripped open again. I’m still so angry. Why did this happen to me? Sometimes, as hard as it is for me to admit, because I know that it’s not true, I wonder if I was bad person in a different life, if that’s the reason that this happened to me. I know that it’s an irrational thought, but please don’t judge me until you’ve been in my place. I truly wouldn’t wish this on my worst enemy. I feel trapped between trying to be positive and just wanting to be negative. And I think that it’s okay to have this time where I let myself be negative. Because I know that tomorrow, when I’m feeling better, I’ll pick myself up, dust myself off, and go back to living life in a positive way. I just need this time now. I’m sorry if this was a sad post, but I want to show everything. I want to be vulnerable. I consider this the ugly truth of a beautiful life. It’s raw, and it’s real, and it’s me.

A Year On Methotrexate

It’s easy for someone to joke about scars if they’ve never been cut.

William Shakespeare

I’ve been on Methotrexate for a year. It’s hard to believe, because it feels like just yesterday I took it for the first time. Methotrexate is a chemo drug, but it has also been found to help people who are suffering from autoimmune diseases, it is my immunosuppressant. To make it simple, it suppresses the immune response in my body. I’ve been sick for 2 years, for the first year, I was on a different immunosuppressant that did not work for me. It honestly made me feel worse, and that contributed to my downward spiral into severe depression. So, a year ago, my doctors decided to start me on Methotrexate. I was terrified because I’ve heard horror stories about this medication, but my doctors were really encouraging, and hopeful that it would work for me within 4-6 weeks. I’m not going to lie, the first 2 months were really rough. Methotrexate can cause really bad side effects, and I was dealing with a lot of them. I was extremely tired (from both my autoimmune diseases and the medicine), horrible mouth sores, and severe nausea. I literally did not get off of my couch for a month because I was so out of it. Methotrexate is so strong, that I can only take it once a week. To help with the side effects, I was taking the highest does of folic acid. It obviously wasn’t working for me, so my doctors also put me on Leucovorin, which is basically a prescription strength dose of folic acid that they also give to chemo patients. It is the only reason that I’m still taking Methotrexate today, and I’m so thankful. After my side effects were taken care of, I really started to notice the change in my body on the Methotrexate. I know it’s hard for people to understand what my life was like before this medication, but I’m going to try to explain it anyway. Before Methotrexate, I woke up in severe pain every single morning, it would take me 5 minutes to get down the stairs because I was so incredibly stiff. My hands were so messed up by the arthritis, that they were so swollen you couldn’t see my knuckles. I couldn’t hold a pen, I couldn’t brush my hair, and I struggled to get dressed by myself. Super hot temperatures were bad for me, and super cold temperatures were bad for me. The pain from my illnesses was taking away my ability to live my life. But within the past year, I’ve gotten my life back. I find it funny that the things I’m now thankful for in my life, I never would’ve thought I’d be thankful for. I’m thankful for my access to the best doctors, the best care, and the best medications. Being on Methotrexate has given me the ability to dive again, give my all to school and work, and experience the two most amazing vacations this summer. It’s also given me the ability to get down the stairs in the morning and it’s given me back the use of my hands. Those little things are what I’m most thankful for. Of course there are some trade offs to being on Methotrexate, I can not get pregnant on it, and I can not drink a lot of alcohol on it. It has also given me constant mouth sores, I have them every single day, so I’ve just learned to live with them. Some of my fingers bend sideways a little bit because of the lasting effects of my arthritis, but it doesn’t really matter to me, as long as I can still use them. But believe me, I will take mouth sores and bent fingers over all of the other pain I’ve experienced every single time. So, this post is just a thank you to the medication that has saved my life. If you told me a year ago that I would be doing this well, I would have laughed in your face. But now I believe it, and it’s because of Methotrexate. So here’s to living life as healthy as a chronically ill person can!

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.