When You Look at Me

The web of our life is of a mingled yarn, good and ill together.

William Shakespeare

I’m very open about being in therapy. Recently, therapy has been really hard and I’ve been forced to look deep down inside of myself to find the answers that I’m looking for. But that’s the hard thing. Most of the time, the answers you want and the answers you look for are not the answers that you find. That can be hard to realize and accept. I’m quick to blame the people around me for how I’m feeling in that moment. It’s something that I struggle with a lot. I think that it comes from people not really seeing what goes on in my day-to-day life when it comes to being chronically ill. It’s something that I have talked about before, because it’s something that makes me really angry. Is the anger warranted? Maybe not. Or maybe it is if you look at it from my side. I struggle everyday with my symptoms. Some days the pain is mild. Some days the fatigue is mild. Some days the medication side effects are mild. But, some days all of those things are severe. Some days I don’t have the energy or the strength to get myself out of bed and down the stairs. Sometimes I go days without showering because I just don’t have the energy. The point is, I wake up every morning not knowing what the day is going to bring me. Every single day is different. I wish that there was a handbook to living with chronic illness. Somebody to just give me all of the easy answers. But there aren’t any easy answers because everyone’s journey is different. I look for validation in everything that I do, which has caused me a lot of stress and heartbreak. I don’t think that it’s wrong to want to feel validated, I think that it’s normal. It’s how you go about it, and how you react to it that means everything in the end. I feel like I’ve driven myself crazy at some points in the hope to feel even a little bit validated. But you don’t always get what you want, and that’s okay. I compare myself a lot to other people fighting chronic illness or mental illness. A lot of times I tell myself that I don’t deserve to feel the way that I feel because other people have it worse than me. It’s an ugly, intrusive and unhealthy thought, and I know that. I just have to keep reminding myself that for me, in my life right now, everything that has happened to me has been “the worst case.” You never expect to have your life turned upside down overnight, no matter who you are. Honestly, drowning in 4 feet is the same as drowning in 25 feet, you still drown in the end. So just know that the feelings you have, deserve to be validated. It’s okay to be selfish sometimes. If you think that you’re in the worst possible situation in your current life, feel those feelings. We need to stop making people feel guilty for having the feelings that they have. We’re all doing the best that we can. I think that all of my anger and frustration that I deal with stems from what people see when they look at me, or rather, what they don’t see. I’m sure you all have pictures in your head when you think about me. And I bet none of them really go beneath the surface. And that’s not your fault, it’s a normal human reaction. But it doesn’t hurt any less, it doesn’t cause any less frustration or anger. I’m good at covering up what really goes on behind what you see when you look at me. I think it’s just become some sort of survival technique, just another way to coast through life on autopilot because it’s just easier. But I’ve come to realize that by doing that, I’m hurting myself even more. There’s layers upon layers of trauma, guilt, grief and pain beneath the surface. Really, really hard things. Things that no normal 21 year old woman should ever have to deal with. Hard decisions have been made, along with impossible choices and everything in between. When you look at me, you don’t see the one hospital trip that changed everything. It’s so much pain and heartache wrapped into 24 hours. It’s the fact that even though I was almost 20, they put me in the pediatric emergency room because I didn’t want to be without my mom. It’s all the tests that they ran, the on-call rheumatologist not really believing my pain, making it that much harder for everyone else to believe it too. It’s my mom laying in the bed with me trying to calm me down, and telling me how sorry she was that she couldn’t help me. It’s my grandma eventually coming to the hospital also to be there for the both of us. It’s my sister cleaning my entire room so it would be nice when I came home. It’s my brother terrified because he thought he was going to have to give me a kidney. It’s being released without any answers or solutions. It’s me crying every single night for the next 3 weeks because I was so beyond done with everything. It’s eventually realizing months later that this hospital trip was the turning point for my treatment. If I didn’t end up going to the hospital that day, my doctor probably would have waited longer to switch my immunosuppressant. So, in the end I guess everything worked out. All of that is what you have no clue about. There’s one other thing that I’ve gone through that people outside of my family have no idea about. It’s something that I still think about a lot. When my doctors and I first started talking about switching my immunosuppressant to Methotrexate (the result of that hospital trip), I was terrified about one thing. My ability to have children in the future. Methotrexate is a chemo drug, and at very high doses it can cause infertility. I stressed out about this for weeks. All I’ve ever wanted to be in life is a mom. And for the those few weeks, I was faced with the thought of that not happening, At this point, I didn’t know if the dose I was going to be on, was high enough to effect having kids. If it was going to, there was one question that everyone kept asking me, would I freeze my eggs? What 20 year old should ever be faced with that kind of decision? How is that fair? Those are thoughts that ran through my head 24/7 for those couple of weeks. When I finally saw my doctor again, the first words out of my mouth were if my dose of Methotrexate would hurt my fertility. The answer was no, it would not effect my fertility, and I would not have to freeze my eggs. But I would have done it in a heartbeat. Because that’s the thing, the fact that I even had to answer that question, or be faced with that kind of decision was frustrating. But coming up with an answer was never hard. You do what you have to do for the things that you want. I don’t like that I have to make these kinds of decisions so young, but they’re decisions that I’ve been forced to make, because I don’t have a choice. So, while you might see a normal looking 21 year old on the outside, everything that goes on inside is so much deeper and harder than you could ever imagine. While I’m good at pretending I’m not, in the end I’m a young woman with a bunch of autoimmune diseases and mental illness. I’m a person scared of the monsters in my closet, and definitely the monsters in my head. I’m not hiding or covering up the hard times that I go through anymore because it isn’t healthy for me, and I deserve to be listened to and heard. Now, when you look at me, think about everything I have overcome in the last 3 years. I hope that by sharing my story, it gives you hope that you can overcome anything hard or scary that you are currently going through. Because if I can, you can too. The really honest truth is that no matter who you are, we all have moments that define us without us ever realizing it in that moment. I think that we all have to be a little bit better at learning and understanding what those moments are for other people. Because the truth is, we all have things buried and hidden underneath the surface. And maybe, we just want other people to see them too. I don’t think that’s too much to ask. It never occurred to me that one day I would wake up sick and never get better. I guess that’s my defining moment. And it’s important enough to be talked about, and I hope that people will understand it, and why it makes me who I am today. The last two posts I’ve written have ended with lines from Us Against You by Frederick Backman, my favorite book. So, I feel like I should end this post with a line too, because honestly I could do a whole separate blog post with all of my favorite quotes from the book, because it’s just that good. Here’s another one of my favorites, and I think it goes with theme of this post too. “It’s hard to care about people. Exhausting, in fact, because empathy is a complicated thing. It requires us to accept that everyone else’s lives are also going on the whole time. We have no pause button for when everything gets too much for us to deal with, but then neither does anyone else.”

My Struggle with Anxiety

We are such stuff as dreams are made on, and our little life is rounded with a sleep.

William Shakespeare

I’ll just come right out and say it. More often than not, anxiety controls every single aspect of my life. I’ve lived this way practically my entire life. I’ll be 22 in October, so that’s a pretty long time. I have had periods of time, ranging from days to months, where I feel like maybe I’ve beaten this whole anxiety thing. But then it’ll come right back to hit me stronger and harder than ever before. Because that’s the thing with anxiety. I don’t think it ever really leaves you. I think that you have good days (if you’re really lucky maybe some good months) and you have bad days. The highs are really high and the lows are really low. At least that’s the case for me. I haven’t had a break from my anxiety in a really long time. It’s become more controllable with medication, and most days I make it through fine. But it’s always there in the back of my mind, I feel it on every inch of my body, I feel it deep inside of my bones. I have horrible days where my anxiety takes over and I can’t even leave the house. Though most days I’m fine. I say fine because that’s what it is. It’s not great or incredible or spectacular, it’s just fine. I get up, do what I have to do, go to sleep and do it all over again the next day. Maybe I’ve gotten used to it, maybe I’ve gotten comfortable in that routine, or maybe I’ve just become numb to it. Most days I think it’s all three. And in between those fine days, I have really good ones. Ones where I do something with friends, or spend time with my family. I would also say watching the Penguins play, but they’re no longer playing hockey (thanks Montreal). I’m thankful for those good days, because I don’t think I would be here without them. But that doesn’t make those fine days any easier. I wish that I could sit here and say that I’m content with my fine days. But I’m not. I hate comparing those days to my good ones because I know what they could be like. I get angry with myself because I don’t understand why every day of my life can’t be like those good ones. I find myself putting a lot of the blame on me for everything that has happened these last 3 years. Anxiety does that to you. Our minds can be very convincing when the place that we’re in is dark. It’s easy for irrational thoughts to take over our rational ones. That’s something that I have struggled with a lot. It’s something that I’m very angry at my anxiety about. When I’m having really bad anxiety days, or weeks, I become a very irrational person. And I hate that about myself. I know that it’s something that I can’t control, because when I’m deep in my anxiety I don’t have any control. Anxiety makes me sad. Anxiety makes me paranoid. Anxiety makes me mad. When I’m very anxious, I can’t be around loud noises. If I’m sitting in the living room watching tv, and I become anxious, I have to go up to my room immediately because the noise of the tv makes me feel like I’m going crazy. If I’m around a large group of people, and I become anxious, I have to find somewhere to go to compose myself. A lot of the time I’m okay, and can handle all of that, but if my anxiety takes over I just simply cannot. It’s not a fun way to live. My life was already ridden with anxiety before my autoimmune diagnosis 3 years ago, and now with everything that has been piled on, it’s bad. My anxiety has not gotten better, I’ve just been given the tools to control it as much as possible. And I’m thankful for that, I just wish I didn’t have to deal with it all, but I guess that’s just how life is. Anxiety is funny. It owns us but doesn’t leave a trace. I wish that I could look in the mirror and have all my pain be shown on the outside. I wish that I could see all of the scars from my trauma over the last 3 years. From my anxiety, depression and autoimmune diseases. Maybe if I could see my pain I’d be a little bit easier on myself. But instead, all my scars and pain are on the inside. I have to remind myself everyday that I’m strong and capable and worthy of living this life. If I could see inside of myself I would look at all of the things I have overcome. Look past my broken body, and see a soul that was put together. I know it’s in there, I just have to keep reminding myself. I’m afraid to let all of my fears, anxiety, grief, guilt and pain out all at once because if I did I don’t think I could possibly survive it. So that’s why I let it out little by little. In therapy, these blog posts, in conversations with family and friends. I know that I’m not an easy person to live with, so I’m thankful every single day for my family. I really don’t know how they do it sometimes. I would be lying if I said that I wasn’t scared to be a girlfriend, fiancé, wife and mom. Because I know that I can be difficult to live with, even to be with sometimes. But I try my hardest. I don’t think that you can become a different person, but I think that you can become a better person. That’s really all I’m trying to do. If you struggle with anxiety, please know that you are not alone, even though it may feel like it at times. If you get up every morning and stare anxiety directly in the face and decide to live your life that day, I’m proud of you. Remember that anxiety doesn’t make us weak, it makes us strong. As I said in my last blog post, my favorite book of all time is Us Against You by Frederick Backman. I’ll end this post with one of the most profound lines. “Life is a weird thing. We spend all our time trying to manage different aspects of it, yet we are still largely shaped by things that happen beyond our control.”

3 Years

All’s well that ends well.

William Shakespeare

3 years. On July 13, 2017 I walked into my rheumatologist’s office for the first time. 3 years ago, I went in nervous and came out terrified. 3 years ago, I left with many more questions than I had answers. 3 years ago, my whole life changed and has never been the same since. Anniversaries are hard. These last 3 years have been the hardest of my life. I’ve learned a lot, grown a lot, dealt with a lot. I knew nothing when I walked into that office for the first time. 6 weeks prior to that first appointment, my pediatrician told me my blood work came back with titers for Lupus. So that’s all I had, all I knew. I waited a little over a month to get in with my rheumatologist, I had no clue what I was in for, or how much my life would change. I remember July 13th 2017 like it was yesterday. My mom and my sister came with me. We of course stopped at Starbucks first, and to this day I don’t go to an appointment without coffee or iced tea in my hand. I didn’t have time to shave my legs that morning, so I apologized to my doctor at least a hundred times for my stubble (I’ve since learned that they really don’t care what your legs look like). I cried practically the entire visit. I was 18, terrified, and lost. I connected with my doctor right away, and I have come to realize that our bond is special, and a lot of patients aren’t as lucky. We talked for what seemed like hours. I had so many questions, some of which couldn’t possibly be answered. I had 10 viles of blood taken that day, they tested me for so many illnesses. So I left with my next appointment booked for 4 weeks from that day. And my journey began. It would take another 6 months to be diagnosed with everything. CREST Syndrome came first, then Lupus, Polyarthritis and Undifferentiated Connective Tissue Disease (UCTD). I’m one of the lucky ones (I know what your thinking, how could I possibly consider myself lucky?) well, some people go years without a diagnosis. So, yes, I am lucky. I’m lucky because I have amazing doctors and a fairly quick diagnosis. Because of my quick diagnosis, I was able to start treatment. But treatment didn’t come without many bumps in the road. It took my doctors and I almost 2 years to come up with the right treatment plan and combination of medications. It was a long and painful road. It was hard for me to keep going, because I didn’t see a light at the end of the tunnel. It took my potassium being at an extremely dangerous level, a trip to the hospital, a stress test and an EKG, a colonoscopy, and a severe flare up that lasted almost 2 months, to find the right medication for me. I literally never thought that I would be able to function again, but then Methotrexate came along and completely gave me my life back. It’s crazy to look back at everything I have gone through in these last 3 years. I still struggle a lot. I’m still so angry, so confused, so frustrated. It’s hard when your life seems to change in an instant. It’s like a punch to the gut when you realize the life that you have imagined for yourself is not guaranteed. The person I was 3 years ago is not the person that I am today. Of course, everyone changes and grows, chronically ill or not. But, I had to do it a little bit faster and a little bit differently than everyone else. And I’d be lying if I said that I wasn’t angry about it, but that’s what therapy is for. And, let me tell you, therapy is really frickin’ hard. So if you’re in therapy, for any reason, you are a super strong person for wanting to better yourself, and I’m so proud of you for that. I’m told all of the time that I’m a strong person, and deep down I know that I am, because I wouldn’t be here today if I wasn’t. But there’s something I think about a lot. Does trauma make you a stronger person, or simply just a person who was forced to change even when the world around them stayed the same? I don’t know. I guess that’s for you to decide. What I do know, is that I have an incredibly strong support system around me. I have never felt like I was doing this whole thing alone. I’ve never been afraid to cry or fall apart because I know that I have people that will stand by me to help pick up the pieces. That’s a pretty special thing to have, and I will be forever grateful for it. I’ve become a much more independent person, I’ve been able to find my voice, I’ve been forced to become a more positive person, because surviving would be impossible if I was negative. I’ve realized the maybe this was always the person that I was meant to be. Maybe you don’t really get it if you aren’t in my shoes, but I think that I was meant to be someone with struggles. Someone with a story important enough to share, someone with a life important enough to be heard. I want to help people, I want to be a voice for people who can’t find theirs. Because I was that person with a voice that was hidden behind my own self doubt. I didn’t know it then, but I was a person with a story that wasn’t written yet. I was a person who had no idea what was barreling towards her. I was a person who didn’t know that there would soon be a point in which everything would forever be labeled as a before and after. Before I got sick, before my life changed, before I knew who I was supposed to be. I’d much rather embrace the after, because I know who I am now. I know what my purpose is. It’s hard and messy and disappointing and scary, but it’s my life and it’s beautiful. All I do is wake up everyday and try to be a better person than I was the day before. 3 years ago, I didn’t know what was coming, what to expect, what to think. Looking back, it’s been more than I ever could have imagined possible, in both good and bad ways. I’m thankful that I get to do this thing called life every single day. My favorite book of all time is Us Against You by Frederick Backman. I’ll tell you all my favorite line, “everyone is a hundred different things, but in other people’s eyes we usually get the chance to be only one of them.” I hope when people look at me they see someone who didn’t let their illness take over their life. That’s all I’m really trying to do. So, happy 3 years CREST, Lupus, Polyarthrtis, and UCTD! I don’t like you most of the time, but you’ve made who I am today, and I really can’t hate you for that.

My Mental Health Part 2

Wisely and slow; they stumble that run fast.

William Shakespeare

A little less than a year ago, I wrote about my struggle with my mental health for the first time. As I continue through my mental health recovery, I would like to keep talking about my experience, and the different things that I have gone through. I’ve chosen to put my life out there for everyone to read and listen to, in the hopes that I can help just one person. I touched on my most severe depression symptoms the first time I wrote about my mental health, so today I figured I’d go into some more detail. The thing that my depression destroyed the most for me was sleep. For 3 months, I didn’t sleep for more than 3 hours a night. I was quite literally a zombie, someone who went through the motions of day to day life without actually living. I had a panic attack almost every single night. All of my thoughts were irrational, but that didn’t stop my brain from freaking out about them. I would talk to myself, shake uncontrollably, cry myself to sleep. I would wake up in the middle of the night sweating. My thoughts would run so wild that I would drag myself out of my room, and sit at the top of the stairs, because I was so incredibly terrified of being alone in my room with those thoughts. Some nights I would go into the bathroom, look out the window and count the stars in the sky. I would have done anything to just stop thinking, and sleep. I didn’t shower, I didn’t eat, I didn’t smile. I was a shell of the person I used to be. I lost 3 moths of my life. Once I got on medication, and saw a psychiatrist, things started to get better. It’s been over a year since I started my recovery (although I don’t think you ever recover, you just learn to cope). I’m 1000 times better than I was back then, but that doesn’t mean that I don’t still struggle. Every time I go into a Lupus flare, my mental health takes a beating. Every time I get nervous or worked up about something, my mental health takes a beating. Sometimes I’ll wake up on certain days, and I know before it even happens, that my mental health will take a beating that day. But, every time, I get through it. I’ll admit, most of the time I don’t know how I overcome it, I just do. I can’t tell you how many times I’ve wished that there was a handbook to living with mental illness. Someone to just tell what to do, how to act, how to cope. Unfortunately, life doesn’t work that way. Everyone is different, and everyone has different things that work for them. I don’t think that mental illness is one size fits all. There are people that can function without medication, there are people who can function without therapy, and there are people who can’t function without either of them. I think that people should be supported no matter what. I’m incredibly fortunate to have more support than I know what to do with, and I’m fully aware that some people don’t have any. All I can do is hope that my story will help someone else. I recently read the book One Day in December by Josie Silver, and one line in particular stuck in my mind. She wrote, “this is real life, where hearts get kicked and bruised and broken, but somehow they still keep beating.” I think that it is so true. I often wonder how, after everything, my heart still beats. I also think that the same thing can be said about our brains. How our brains can think such horrible things, betray you in more ways than one, but, in the end can still understand and accept the good things, that they can be put back together again if you put in the effort. My journey has not been easy, but is anyone’s ever? Shouldn’t we all be a little bit easier on ourselves for how hard we are trying? I will continue to be a mental health advocate for myself and for others. My story will be heard. It’s okay to not be okay, and it’s okay to need help. I wish I could tell that broken girl who was sitting at the top of the stairs in the middle of the night almost 2 years ago, that everything will be okay. So I’ll tell all the people that feel broken now, that it does get better. I am living proof of it. I’ll leave you all with another line from One Day in December, “there comes a point where you have to make the choice to be happy, because being sad for too long is exhausting.”

Feeling Invisible

It is the stars, The stars above us, govern our conditions.

William Shakespeare

I promised myself before I started my blog, that I would be open and honest about everything that I go through. So today, I want to talk about the thing that I struggle with the most, feeling invisible. It’s hard for me to talk about, because honestly it’s the thing that I’m probably most embarrassed about. I struggle with accepting the fact that it’s okay to have these feelings, and to be angry. I have an invisible illness, actually, multiple invisible illnesses. You can’t tell that I’m sick when you look at me. It’s both a blessing and a curse, and I’ll explain why. But, first, I need to let you all know that it’s not okay to tell someone that they don’t look sick. We know that you don’t mean anything by it, but it’s hurtful. But, more than that, what exactly does a sick person look like? How is that label fair to put on someone? You wouldn’t tell someone who’s going through a divorce, that they don’t look like their marriage is breaking up, so don’t do it to us. Anyway, back to why I feel invisible sometimes. My body is very sick, it’s very broken, and it’s not a normal 21 year old’s body. Inside, my body is attacking itself, and it’s so painful. Sometimes, I wish that I could turn myself inside out and put my pain right out for everyone to see. Maybe then people would understand. It’s become second nature for me to put a smile on my face and push through my days. And, most of the time, that’s a good thing. I’m thankful that I’m able to work 4 jobs, and do things with my friends and family. But at what point is it unhealthy to push through it all of the time? At what point does “faking it till you make it” become too much? These are the questions that I ask myself every single day, and the things that I’m working through in therapy. Feeling invisible also makes me angry. I’m angry that the people on the outside can’t see what I go though. Nobody sees my joint pain, my mouth sores, my skin rashes, my depression, or my anxiety. Nobody sees the many doctor’s appointments, the blood tests, the emails back and forth with my rheumatologist. Nobody sees my suicidal thoughts, my shaking body in big crowds, or me sitting in the hallway in the middle of the night with panic attacks. And, that makes me angry. I know that it is not necessarily a rational thought, but it’s one that I can’t control. It’s a thought that I’m working so hard at breaking through hours and hours of therapy. But learning to live with chronic illnesses, and recovering from severe depression doesn’t happen over night. There’s no handbook with all of the right answers, as much as we all wish that there could be. I refer to myself as a “work in progress”, because I am not even close to being okay with everything that has happened to me in the past 3 years. I’m extremely thankful for my family, because they do see all of things that I go through, and I’m thankful that I live in a house where I know that I’m not invisible, and that my feelings are valid. But, again, it’s not a thought that I can turn on and off with the flip of a switch, no matter how validated I feel. A few days ago, somebody (who is NOT a good person) told my mom, “how would you feel if you had a sick child at home?” obviously not knowing anything about me or our situation, and it hurt the both of us. My mom does have a sick child, it’s me. She takes amazing care of me, and I’m so lucky to have her. But, comments like that hurt. You never ever know what someone is going through behind closed doors, I think we all have to be a little bit more empathetic and smart when talking to people we know little about. Every morning I wake up and try to be little bit better than I was the day before. I try to be open and honest and raw and real. Everyone who is chronically ill handles it differently, and it affects them differently. There’s no criteria that were trying to live up to, we’re all just doing the best that we can. We all want to feel seen, and for our feelings to be heard and validated. I can accept that I will probably always feel invisible when it comes to my illnesses, and what I go through physically and mentally on a day to day basis. But my voice will not be invisible. I will advocate and share my story in the hopes that it raises awareness. If you feel invisible, for whatever reason, you are not alone. Please know that I hear you and I see you. We’re all doing the very best that we can, and that’s okay.

National Siblings Day

Love sought is good, but given unsought is better.

William Shakespeare

Today is National Siblings Day, so I thought what better time than now to talk about my siblings. I’m the oldest of 4. My brother James is 19, my sister Anabelle is 16, and my sister Stella is 9. They are my best friends, my rocks, my support system, and my whole entire world. We also always say that we’re each other’s soulmates, because I don’t think I’ll ever find a love as pure and as strong as the love between my siblings and I. I’m so incredibly lucky to have them. My relationship with James is so amazing. We have always been best friends, he was the first sibling I ever got and we have been close since the day he was born. Ironically, he’s also the one I fight with the most. We both have very strong personalities and both always want to be right, so we butt heads a lot. But, I can also go to him with any problem that I have and he would help me no questions asked (and that has happened many, many times). Anabelle is 100% my soulmate, my biggest supporter, my voice when I can’t find my own. She gives the best advice, and I trust her with my life. She’s 4 1/2 years younger than me, but she acts like the big sister very often, she is my protector. Stella is my favorite person in the whole entire world. I was 12 when she was born, and she changed my life. She is hands down the funniest person in the family, can find the good in absolutely everything, and has my back 24/7. We always say that if every person lived like Stella, the world would be a much happier place. I could say a million more amazing things about all 3 of them, but perhaps the most important and profound thing that I could say is that they saved me. I’ve openly talked about my struggle with my mental health after being diagnosed with my autoimmune diseases, and I was so incredibly close to ending it all, and my siblings were the reason that I stayed. I couldn’t leave them, couldn’t put them through all that pain. They carried me through everything while fighting through their own battles, and nothing that I could ever say or do would be enough to thank them. Even though I’m doing so much better now, James still asks me how I’m feeling every single day. Anabelle and I have our own rooms, but she still sleeps in mine every night. When my depression was really bad, Anabelle would stay with me at night so I wouldn’t be alone. She knew how hard the nights were for me, and she sacrificed her own sleep to watch me and make sure that I was okay. She also comes to every single doctors appointment with me, and always makes my doctor and I laugh. Stella sits with me while I organize my pills for the week, rubs my knees and hands when they hurt, and always tries to cheer me up when I’m sad. I truly do not know what I would do without them, but I do know that if I didn’t have them, I wouldn’t be here right now. They saved me from myself. People can’t believe how close we are, we literally tell each other everything, and we know every little thing about each other. But I think that’s the way it should be, if you don’t have your siblings, then who do you have? I thank god for them every day. So, on this National Siblings Day, I want to say thank you to James, Anabelle and Stella. Thank you for being there for me when I needed you the most, thank you for being the light when I only saw darkness, and thank you for loving me unconditionally even with all my flaws. I love you guys so much.

Coronavirus Pandemic 2020- Through The Eyes Of An Immunocompromised Person

If we are true to ourselves, we can not be false to anyone.

William Shakespeare

Happy quarantine 2020! Wow, I can’t believe I actually had to write that, it truly doesn’t feel real. It’s a strange world we’re currently living in, and I wanted everyone to see it through the eyes of someone who is significantly immunocompromised. Everywhere you look, there are people posting to stay inside to keep the elderly and immunocompromised people safe and healthy, so if you are staying inside, you’re keeping me safe. And if you haven’t been staying inside, or at least distancing yourself from others, now you can put a face to someone you would be helping. I have Lupus, CREST Syndrome, Overlap Syndrome, and Polyarthritis, which weakens and compromises my immune system. My immune system attacks my healthy cells, so I take Methotrexate, which suppresses my immune system, to stop my body from attacking itself. To make it simple, my immune system is not as strong as the average person, which puts me at a greater risk of catching the Coronavirus. To be completely honest, I’m not super worried, and I’m trying to be as rational as possible. I saw my rheumatologist on Tuesday (like I do every 6 weeks, it just happened to fall during an unfortunate time) and she definitely made me feel a lot less worried about this whole thing. If I were to catch the virus, it wouldn’t be anything that would be life threatening, it would just take my body a little bit longer to fight it, which I’m used to. It can take me up to a month to get over the common cold, which is extremely annoying and frustrating but it’s something I’ve become used to. Even though for the most part I’m handling all of this okay, I’d be lying if I said I wasn’t a little bit scared. I just want to stay as healthy and as safe as possible, but I also know that some things are unavoidable, so I just have to stay positive and aware of everything that is going on. I think in my normal day to day life, I sometimes struggle with what people don’t see. I have an invisible illness, and people don’t see my daily struggles and worries, and with the current state of our country in this pandemic, I think that my frustration is heightened. All of the sudden, every single person is hyperaware of handwashing, not sharing drinks/food, and cleaning everything that they touch. But this is my normal, everyday life, global pandemic or not. Because my immune system is weakened, I always make sure to wash my hands multiple times, and I NEVER share drinks with anyone. It’s become my new normal, it’s become something that has to happen to keep me healthy. And honestly, immunocompromised or not, please always wash your hands. I didn’t have a choice to get sick, I didn’t have a choice to have a weak immune system, but I do have a choice to take care of myself and my body, even if it is broken, it’s still mine. But I also choose to not live in fear. Fresh air is so important for my physical health, but more importantly for my mental health. I went to Montauk last week and it was so good for me, and the last few nights I’ve just been siting in my backyard reading a book. Being quarantined is not easy, but I have an amazing family who keeps it entertaining (but I’m very surprised we haven’t killed each other yet). Also one more thing that has really annoyed me is the new malaria drug that everyone is now talking about as a cure for the virus. The drug is Plaquenil, and I was on it for almost 2 years. Yes, it’s an anti-malaria drug, but it’s also been shown to help people with Lupus and Rheumatoid Arthritis. I was on it before I switched to Methotrexate, I had to switch because Plaquenil did not work for me. The thing that annoys me is that a lot of people think this is a new, revolutionary drug that was just discovered, so it’s frustrating for me, and my fellow autoimmune warriors, who have known about this medication forever. I truly hope that it works for people fighting the virus, and I also truly hope that all of the people who take it for their autoimmune diseases still have access to it. It’s a scary world that we are living in, but just remember that this too shall pass. When you wonder who you are staying inside for, think of me, and all of the other immunocompromised people in the world. If you’re struggling with your mental health during this quarantine, know that you are not alone, I’m right there with you. And a big thank you to our healthcare workers, especially my rheumatologist and psychiatrist, who I was able to see in office earlier this week to get my medications. We’ll all get through this, here’s to staying inside and staying healthy!

Rare Disease Day 2020- Living with CREST Syndrome

To thine own self be true.

William Shakespeare

Happy Rare Disease Day! Today is truly the one day a year where I feel seen and heard by everyone, not just by the people who I know support me. CREST Syndrome is my main diagnosis, and that diagnosis came in October of 2017. There are less than 200,000 diagnosed cases of CREST in the entire country, making it a rare disease. CREST can be extremely confusing, but I’m going to explain it the best that I can. CREST, which is also known as Limited Scleroderma, is an autoimmune/connective tissue disease. Each letter in CREST stands for a different illness. So basically it’s like having 5 different diseases all wrapped into one. The C in CREST stands for Calcinosis, which is actually how I was diagnosed. A calcinosis is a formation of calcium deposits, in CREST, they present in the hands, feet, and face. I had a calcinosis on the side of my nose for 7 years, and I eventually went to get it removed for cosmetic reasons, of course thinking it was nothing more than that. After having it removed and tested, my dermatologist reached out to my rheumatologist and told her to consider CREST as my diagnosis, and that is how I was eventually diagnosed. The R in CREST stands for Raynaud’s Phenomenon. This is the one that effects my day to day life the most. Raynaud’s is when the blood vessels in certain areas, such as fingers and toes, spasm in response to cold temperatures, causing decreased blood flow to those areas. My fingers and toes turn white, purple, and red when I’m in cold temperatures. It can be very painful and extremely frustrating. It’s something that I have to watch very closely, because ulcers can happen. One of the medications that I take is specifically for my Raynaud’s, and it has helped me so much. And of course, wearing multiple pairs of socks with Uggs, and gloves. Also, hand and feet warmers have become my best friends. The E in CREST stands for Esophageal dysfunction. Basically this just means problems with the esophagus, I have a large hiatal hernia in mine. It is when part of the stomach pushes up through the diaphragm muscle. It was found during an endoscopy, luckily I didn’t have to get it removed because it still slid, and wasn’t getting stuck. The only discomfort it causes me is bad heart burn, but I can handle it. The S in CREST stands for Sclerodactyly. It is a localized thickening and tightness of the skin of the fingers or toes. Thankfully this is the disease I haven’t yet had any symptoms of. It is something that I have to watch for very carefully though. It can become dangerous because it could eventually cause the hands to curl inward and get stuck. Sclerodactyly can lead to systemic scleroderma, which is a scary disease that can be incredibly dangerous. This is the reason that I can not be on any long-term steroids like Prednisone, because nobody knows if sclerodactyly/scleroderma is laying dormant inside of me, and steroids can bring it out if it is. So in my case, it’s better safe than sorry. The T in CREST stands for Telangiectasia. This causes small red spot on the hands and face that are caused by the swelling of red blood cells. I get these spots sporadically, and not very often. They don’t cause me any pain, they’re just noticeably visible. Living with CREST Syndrome has been the hardest thing that I have ever gone through. Every day is different, and every day is hard in different ways. I have to be very aware of any new thing that shows up on my body, or any new pain that I have. It’s hard to have a rare disease, so much harder than anyone could ever imagine. Besides my rheumatologist and dermatologist, I have been to one doctor who knows what CREST is. It’s frustrating to have to explain your disease to a DOCTOR. It’s hard to know that the people who went to medical school have no idea about the disease that you’re suffering from. But that is why I try so hard to raise awareness, because at the end of the day this is my real life, my real diagnosis. The message for Rare Disease Day this year is “rare is many, rare is strong, and rare is proud”. There are so many more people suffering from a rare disease than you realize, and all of those people that are suffering, including myself, are strong and proud of who we are. I’m aware that I am rare, and even after everything I’ve been through these past 3 years, I’m so happy to be me (rare disease and all!) Always remember that rare is real.

Why I Use My Voice

Love all, trust a few, do wrong to none.

William Shakespeare

Speaking up for myself has not always been easy. It wasn’t until I got sick that I started to find my voice. I’ve always been shy, quiet, and introverted. Honestly, I still am in some situations, I don’t think that it ever goes away, I can just improve. Speaking out about mental health is very important to me. I choose to speak up for those who cannot speak for themselves. There’s a horrible stigma surrounding mental health and it makes me physically sick. I’m not ashamed to say that I was severely depressed, and I was having suicidal thoughts, because it is not anything to be ashamed of. I was able to get the help that I needed, and now I’m here and able to talk about my struggles. My dad is a high school teacher, and last month I went to work with him and spoke to a couple of his classes. I truly think that it was the most important thing I have ever done. I was real, and raw, and honest and showed who I truly was. I talked about my chronic illnesses and my mental health journey and recovery. I had so many kids come up to me crying afterwards telling me how much I helped them. I was so happy and so thankful that they got something out of my story, and honestly they helped me more than they will ever know, and for that I will be forever grateful. I never ever thought that my story would be important enough to be shared, and now it is. I’ve also learned to use my voice through my experience living with numerous auto immune diseases. I want to educate people about the different things that I go through. I’m in a very different situation than normal 21 year olds, and I understand and accept that. I know that a lot of people want to ask about my illnesses, but they are nervous or afraid to. And I completely understand that, it can be an uncomfortable conversation. So I speak about it first, so that people can read or listen to what I go through, and then if they are comfortable enough after they will ask questions. So, if you’re reading this, and have a question, please ask me, I will always answer. Another thing that has been new for me over the past 3 years, is how protective I’ve become over the mental health/chronic illness community. I think I’m more protective over mental health because of the stigma that’s around it. I do not think that it is okay to joke about mental health, or make fun of someone who has a mental illness. If you have never struggled with mental health/illness you have absolutely no right to make a joke out of it, because you don’t understand what these people go through and struggle with. So I’ve learned to stand up for it, and to speak up for myself. People don’t ask to be mentally or chronically ill, I know that I certainly didn’t. But this is my real life, and I get through it the best that I can, and believe me it’s not perfect. I make mistakes and have really bad days, and take my anger and frustration out on people that don’t deserve it. But I work really hard to be the best version of myself that I can be, illnesses and all. My advice to all of you is, don’t let anyone talk down to you, or tell you that certain things aren’t worth standing up for. If you feel like it’s worth standing up for, then DO IT. Admit when you are wrong but stand up when you are right. Be real and open and honest, and don’t give a damn about what people think of you. Your mental health matters and don’t listen when people tell you that it doesn’t. Learn to use your voice, it’s powerful. People always ask me if a part of me is happy with how my life has turned out, and in a weird way I am. Having to struggle and fight through my illnesses has made me tough and a lot stronger than I ever thought I was. I’ve developed the strength and the confidence to fight for what I believe in. I have finally discovered my voice and I have used it to help people and, most importantly, to stand up for myself and the people that I love the most. I have never been more thankful to be me.

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.