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.

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.