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.

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.