Rare Disease Day 2021

Though she be but little, she is fierce.

William Shakespeare

Happy Rare Disease Day! I love this day, because it gives me a chance to talk in detail about my rare diseases, and it gives me a chance to raise awareness. I have 2 rare diseases, CREST Syndrome and Mixed Connective Tissue Disease (MCTD). I’ve written posts about both of them before, but I’ll give a quick rundown of both in case you don’t want to scroll all the way back. CREST Syndrome is a category of Scleroderma, which is a rare group of autoimmune diseases. According to the Genetic and Rare Disease Information Center (GARD), Scleroderma affects an estimated 300,000 Americans- less than .1% of the country’s population, with CREST being even rarer (less than 200,000 people are diagnosed). Scleroderma causes the immune system to produce too much collagen, causing the skin to become hard and stiff. CREST Syndrome is also known as Limited Scleroderma, meaning that only limited areas of the skin are thick, usually just the hands and face. CREST stands for calcinosis, Raynaud’s phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasias. A lot of big words that probably look scary, but they aren’t too serious with the proper care & treatment. Every single patient with CREST has a different pattern of symptoms. For me, Raynaud’s affects me the most. I can’t regulate the temperature in my hands and feet, so when it’s cold out my fingers and toes will turn red, white, and purple, plus they’ll go numb. Luckily I’m on a medication called Norvasc, which is a calcium channel blocker. It is most commonly used to treat high blood pressure, but it helps my Raynaud’s by relaxing the blood vessels, making it easier for blood to flow. It has helped me so much, and I’m so thankful for it. I also make sure to bundle up when it’s cold out- which means 3 pairs of socks & Uggs on my feet, and hand warmers & gloves on my hands. Raynaud’s can be uncomfortable, painful, and annoying, but it’s nothing too hard to have under control. Second to Raynaud’s for me is esophageal dysmotility. It most commonly leads to problems swallowing. In my case, I have a fairly large hiatal hernia in mine, which was found through an endoscopy. It doesn’t cause me any horrible pain, but it does cause pretty bad heartburn and mild chest pain. If my hernia shifts, I will have to have it removed, but for right now I’m fine. Again, nothing too hard to handle right now thankfully. The other thing in CREST that I’ve had to deal with is a calcinosis. They are calcium deposits in the hands, feet, and face. I had two on the side of my nose, which I got removed about 3 years ago for cosmetic reasons, but the removal ended up leading to my diagnosis of CREST. I will always be thankful that my dermatologist tested them, and reached out to my rheumatologist telling her to test for CREST. I don’t know if I would have the diagnosis right now if it wasn’t for her, and I’m extremely grateful. My other rare disease is MCTD. According to GARD, MCTD occurs in about 2 persons per 100,000 per year. 80% of those are women. MCTD is a autoimmune disease, and the most well characterized overlap syndrome, that has features commonly seen in three different connective tissue disorders: Lupus, Scleroderma, and Polymyositis. Some people may also have symptoms of Rheumatoid arthritis. Some of my symptoms include: lupus-like rashes (I get the butterfly rash), muscle weakness, fatigue, fevers, and swelling in my hands. When it comes to MCTD, my hand pain is the worst. As I’ve said in previous posts, I couldn’t use my hands for 2 months, because I was in so much pain. I am one of the MCTD patients that has the symptoms of rheumatoid arthritis without actually being diagnosed. I have been diagnosed with polyarthritis, which is arthritis in 3 or more joints. Arthritis affects my hands, knees, and hips the most. I’ve come to realize that CREST and MCTD share a lot of the same symptoms- at least in my case. Looking back at the process of being diagnosed, everything makes so much sense now. Overall, I think that CREST affects me more than MCTD, but everyday can be different. In honor of today being Rare Disease Day, I want to throw out some statistics of rare diseases worldwide. According to GARD, there are over 300 million people living with one or more of the 6,000 identified rare diseases around the world. Rare diseases currently affect 3.5%-5.9% of the worldwide population. 72% of rare diseases are genetic, while others are the result of infections, allergies, and environmental causes. A disease is considered rare in the United States when it affects fewer than 200,000 people at a given time. One of the saddest statistics to me is that 90% of rare diseases DO NOT have an FDA approved treatment. That is frustrating & heartbreaking. According to the Rare Disease Day organization, “each rare disease may only affect a handful of people, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.” Read that again. Crazy, right? And the really mind-blowing thing is, there are probably a million more people living with a rare disease, but are missing a diagnosis. And unfortunately, that comes down to a lack a funding, research, and education on rare diseases. I can’t even tell you the amount of times I’ve had to explain what CREST or MCTD is to a doctor. It honestly shocks me every time, because I can’t believe a medical professional isn’t educated on certain rare diseases. There is still so much awareness that has to be raised. So many people need to stand up and fight for the people suffering. Having two rare diseases is extremely difficult (probably the hardest thing I’ve ever had to live through) but it has given me so much strength and so much motivation to use my voice. We need better healthcare and we need more funding. We have to give people a fighting chance. I’m so lucky to be in the position I’m in, and I will never stop advocating for what I believe in. And I believe in talking about chronic & mental illness, and two of mine just happen to be rare. I encourage you all to get involved, and even if you’re not the one who has a rare disease, advocate for the people who do. I think that listening is so important, you can learn so much just through words. If you would like to donate, I’d suggest going onto the National Organization for Rare Disorders (NORD) website, where you can become a one-time or monthly donor. The money goes to rare disease research. It’s hard to have rare diseases. I didn’t think I would ever be okay. I didn’t think I would ever be me again. But the truth is, I have become so much more than I was, and so much more than I ever thought I would be. Being rare has taught me how to advocate for myself, and it has helped me find my voice. And I’ve learned a lot not just about myself but about other people as well. I guess in a weird way I’m thankful. For this body, this heart, this mind, this life. Even if it comes with a few rare diseases (hey, it’s a great ice breaker at parties lol). I’ll end this post with one of my favorite quotes from a book I think very highly of, The Two Lives of Lydia Bird by Josie Silver. “I found the old me, still in here, and the new me sitting right alongside her. We made friends.” Happy Rare Disease Day, everyone!

Mental Health Check-in/Normalizing Mental Illness

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

William Shakespeare

To be honest, I’m not quite sure what exactly this post will be about. I just feel like writing, so I guess this will be a little mental health check-in for me, for you, for everyone. This will also be a little bit about normalizing mental illness, and how it’s okay to talk about how it affects you. Let’s jump right in. First off, mental health check-in. I’ll tell you how I’ve been doing the past few weeks, and hopefully it will lead you to have a small check-in with yourself. Ask yourself how you’ve been feeling, and if you’ve noticed anything different about your moods (both positive and negative). I think that checking in with yourself is like taking a small step back & just taking a minute. We all need that every now and then. Also, my Instagram DM’s are always open, if you ever need anyone to talk to, I’m a safe space & ally. I feel like my moods have been very up and down the past few weeks. Winding down from the holidays is always challenging. I’m a person who needs to have something to look forward to, even if it’s small. So once the excitement of the holidays is over, it can be hard for me. January, February, and March are by far my toughest months. Seasonal depression is a very real thing, and a lot of people struggle with it. If you’re one of those people, please know that you are not alone, and warmer & brighter days are ahead. My brother also went back up to school last week, and I miss him. I feel like a piece of me is missing when he’s gone. I don’t necessarily handle change very well, so it always takes a little bit of time for me to feel 100% after something changes, like my brother leaving. Something else I’ve been struggling with recently is negative self talk. I always try to give myself positive affirmations, but I have noticed that the way I’ve been talking & thinking to myself has been negative. I don’t really know why. I think I just go through times like that. But it’s really hard, and often times it’s hard to come out of it. I’m getting there though. Therapy the other day was really tough. I thought about it for a long time afterwards. It was the first time I admitted to someone other than myself that I’m afraid that my life isn’t going to turn out the way that I want it to. It’s something that has weighed very heavy on my mind the past week. I want a family. I want a husband, I want kids. And for some reason I’ve been absolutely terrified that it won’t happen for me. I guess I feel like I’m behind in some way. That certain things should have happened already. And then I have to remind myself that I’m only 22 and exactly where I’m supposed to be in my life. It’s that rational vs irrational thing again. I have to believe that my person is out there, that I’ll get the family I have always dreamed of. I have to believe because I couldn’t get through the ups & downs of life if I didn’t. But some weeks are harder than others. And that’s okay. Now I feel like switching over to positive things I’ve experienced these past couple of weeks. I really try to show both negatives, positives, ups, and downs of living with mental and chronic illness. I always want to be completely real and honest, which is why I talk about both bad and good things. Now, for some positives. A month ago I bought two 3-month-old guinea pigs. My therapist recommended getting a small emotional support animal, and now here we are. Their names are Moira and Twyla (this is what happens when you binge Schitt’s Creek and it becomes your new favorite show lol). They are the cutest things ever and I really didn’t know how much I was going to love them. They’re another reason to get out of bed in the morning, and I’m so happy I have them. And now let’s talk about probably the most exciting thing from these past few weeks. My cousin is getting married, and she asked me to be her maid of honor. I’m so incredibly honored and I can’t wait for the planning, the memories, and of course the wedding itself. I think as you get older you realize the people who are there for you through thick and thin, no matter what. My cousin Zion is one of those people, one of my best friends, and my rock. I’m so excited to stand next to her on her special day. While I’ve struggled with a lot of new things recently, there’s also so much good to be grateful for. And that isn’t lost on me. I want to switch gears now and move onto normalizing mental illness. It was recently Bell Let’s Talk day, which is day to bring awareness to those struggling with their mental health, and to open up the conversation surrounding it. I have never been afraid to share my story. I think that my story gives me strength, and by sharing it I know that I’m helping people. I also want to say before I dive into this next topic, that I’m not trying to downplay depression & anxiety by trying to normalize it. They are serious, and they need to be treated. I’m simply trying to normalize what people suffering from it go through, so we don’t feel so alone. I think that the conversation surrounding mental illness should be normal, it should be an everyday discussion, because it isn’t something to be ashamed of. So that’s what I mean by “normalizing” it. I’m going to be really vulnerable right now in the hopes it makes at least one person feel more comfortable. I’m going to describe what happens to me in a depressive episode, because I know other people struggle with the same exact things, but might be afraid to say it out loud. I go days and days without showering. I wear the same clothes over and over again. I don’t brush my teeth. I don’t have energy. I don’t have motivation. I can’t concentrate. I’m angry. I’m scared. I’m mad at myself for being this way. I lash out at people. I ignore my friends. I lose myself completely. And truthfully, I need a lot of help pulling myself out of it. I’m putting this all out there because it’s real. And I know I’m not the only one who experiences these things. I know that it can be embarrassing to talk about, which is why I’m doing it. If you’re reading this and go through the same things, I hope you know that you’re not alone. In October I had to increase my antidepressant. I’m not ashamed to say that I had to, and if I didn’t do it, I don’t know what kind of place I’d be in now. It’s okay to need medication. It’s also okay if you don’t. Do whatever works for you, and never apologize for putting yourself first. I know I say it all the time, but we really are all just doing the best that we can. And I think that’s brave. I’m going to leave you with a quote from Us Against You by Frederik Backman (shocking, right?). I think it sums up how I genuinely feel about other people, especially those who struggle like me. “I wish you courage. I wish you rushing blood. A heart that beats too hard. Feelings that make everything too hard. Love that gets out of control. The most intense adventures. I hope you find your way out. I hope you’re the kind of person, who gets a happy ending.”

A Letter to My Past Self

All that glitters is not gold.

William Shakespeare

Dear 16-year-old Eleanor,

Hey girl, slow down for a minute. One day you’re going to look in the mirror and not recognize the person staring back at you. You’ll look a little bit older, and a little more tired. I hate to break it to you, but your heart will be broken, your mind will be put through the ringer, and your body will be pushed to it’s limit. But you’ll also be stronger than you could have ever imagined was possible, you’ll be brave, you’ll be proud of what you’ve been through. Enjoy every second of still being a kid, because in a few short years you’ll be forced to grow up super quick. Enjoy those early morning hockey games, and those late practices. Enjoy the road trips & the hotels & the knee hockey games. Enjoy those snack bar lunches and dinners. Enjoy every single minute, because you’ll wish a thousand times over you were back watching a travel hockey game. You will say over and over again to family & friends that you’d give anything to go back, and of course they’ll agree with you. Cherish the time you’re able to spend with your best friends. Go see that movie, go shop at that store, go watch that game. Because there will come a point where you will all live in different cities or different states. Where your only chance to hangout and catch up is over facetime while you’re both preoccupied by a million other things. But the love between you and your friends will never fade. So believe in them and keep them around even when it’s hard, because I promise you that they’re worth it. Dive your heart out, because you’ll have days in the near future where you will have trouble going up and down the stairs, and days where you’ll need help brushing your own hair. Stop pushing people away. You’ll need a strong support system around you in a few years. Start trusting that people want to be around you for good reasons. That they may actually enjoy being around you. Stop being afraid to speak up, to give an opinion, to be loud even when you want to be quiet. Stop doubting yourself. Because in a few years, you won’t have a choice but to speak up and advocate for yourself. And, guess what? You’ll do it. You’ll be louder than you ever thought was possible, you’ll be confident in what you’re saying. You’ll do it because you don’t have a choice. But it’ll make you strong. Go look in the mirror right now. Stare at the girl looking back at you. Take her in, really look at her. Because what if I told you that you’ll have less than 2 years of that girl looking back at you left. What if I told you that that girl in the mirror is 24 months away from going through the hardest 3 years of her entire life. What if I told you that you’re going to be a completely different person, shaped by things completely out of your control. That you’ll be angry, sad, full of grief & guilt, broken, shattered, close to ending it all, and absolutely terrified. You won’t know which way is up, you’ll have a complete mental breakdown in the lobby of a hockey rink, you’ll push people who care about you away, you’ll spend your nights sitting at the top of the stairs rocking back and forth because you’re afraid of the monsters in your head, you’ll shut down, you’ll become a shell of yourself. You’ll hurt people you care about the most, you’ll lie, you’ll hit rock bottom. It all sounds pretty terrifying, right? I’m not going to sugar coat it, it is scary. It’s heartbreaking. It’s just plain awful. But what if told you that you’ll also learn how to stand up for yourself, how to be authentic, how to be honest. You’ll grow, you’ll accomplish so many amazing things, you’ll meet so many great people. You’ll go on vacations, see new places, experience different things. And, yes, while you will have those months of having trouble doing simple things like walking up & down the stairs or brushing your hair, you’ll make it through those hard days and dive again. You’ll make it out of rock bottom, you’ll find that light at the end of the tunnel, you’ll survive. You’ll become a much stronger person. And then one day, when you’re 22, you’ll look in the mirror and see a different person looking back at you. And yes, she’ll be tired and look older. But she’ll be happy & full of life & real & beautiful. Keep going even when you feel like you can’t, because the view at the top is pretty great. I write this letter to you with a mind softened by grief, and a heart strengthened by struggle. Do not give up. You’re destined to do amazing things. You’ll help so many people. You’ll find out who you truly are. And the most important thing, you’ll be okay, I promise.

Love,

22-year-old you

When it’s Hard to Get Out of Bed

Are you sure that we are awake? It seems to me that yet we sleep, we dream.

William Shakespeare

Most days, the hardest thing for me is getting out of bed in the morning. The decision to get up and start the day, is the hardest one that I make all day. I’m easily overwhelmed thinking about the day ahead, no matter what I’m doing or how busy I am. Anxiety can definitely make you irrational, and make you believe that things are going to be worse than they actually are. So each morning, it’s an internal battle for me. Weighing my irrational & rational sides. Deciding each day to be bigger than my anxiety and depression. And doing all of that is really hard. Exhausting even. I’m not here to pretend it isn’t, I’m just here to let you know that if I can do it everyday, you can too. Something that has helped me get out of bed is having something to do as soon as I get up. That thing right now is skincare. I’ve never been a person who really cared about what my skin looked like, and I definitely have no talent when it comes to makeup. So doing something for my skin is new for me. But it has become something I look forward to doing everyday. It’s literally 3 steps and takes 5 minutes, but if I do it, I feel like I’ve accomplished something for the day already. I’ve learned throughout my journey with mental illness, that having small goals to accomplish each day helps me carry on with all of the other things I have to do that particular day. They’re goals that I know I can do, but it still feels really good when I accomplish them. They’re small victories to be proud of. I also like to lay out my outfit for the next day the night before. I find that if I have clothes already picked out, I’m more likely to put them on instead of just staying in pajamas (but believe me, I have those days too. I mean come on, who doesn’t love a good pajama day). Anyway, laying out my clothes the night before has helped me get out of bed in the morning. I also work a lot. Which is a pretty big reason why I have to get out of bed. Wednesday mornings I have to be up and ready to entertain people at 7am on the morning radio show I do. I absolutely love it, and I’m up so early I don’t even have time to think about not getting up. So I guess you could say that Wednesdays are my easy days. On Tuesday, Thursday, and Fridays I nanny. While it can be hard to get up on some of those days, I know that I have to, and honestly I want to. I love those babies so much and I’m so incredibly thankful for them every single day. They have saved my life without knowing it, and on those days I truly can’t wait to get to them. I consider myself extremely lucky to have jobs that I love, because loving them makes those tough mornings a little bit easier. It seems that my life has become coping mechanism after coping mechanism. But I guess that it’s a good thing. If I didn’t have ways to cope, I don’t think I could function normally. I’ll give you a few of my coping mechanisms, in case you’re looking for some. When I’m feeling anxious I like to listen to music, or be around my anchor person if possible. I use the term anchor person to refer to the person who knows how to calm me down/make me feel better. That person for me is my sister, Anabelle. She’s the first person I go to, but my parents and my brother & other sister are awesome too. I would highly recommend having an anchor person if possible. I also carry a book with me literally every single place I go. Reading has always been something that has grounded me, I never go anywhere without some kind of book. If I’m feeling anxious in a public place, I’ll pull out my book and read a few pages if it’s possible. Another thing I’ve noticed myself doing is brushing my hair when I’m feeling anxious. It’s always just been something I’ve done. Through recent therapy sessions I have learned that anxiously brushing my hair is more of a compulsion instead of a coping mechanism. It’s a very thin line between compulsion and coping, so my advice to you is to watch it closely. But, also, don’t be too hard on yourself, you’re doing the best that you can in your particular circumstances. Like I’ve said in previous blog posts, something new that I’m experiencing is disassociation. It’s definitely been something that has been hard to work through, but I’m slowly learning. When you disassociate, engage your 5 senses, it will help bring you back. For me, I pet my dog, or drink an ice cold glass of water. Again, just do the best that you can, there’s no guidebook (even though sometimes I wish that there was). I guess I just want everyone reading this to know that it’s okay if it’s hard to get out bed some days, it’s okay to try new coping mechanisms, it’s okay to be honest about what you’re going through. I struggle every single day to get out of bed, but I’m still here, still fighting, still learning. I think that’s all we can really do. If you got out of bed today even if it was hard, I’m proud of you. By now you probably know that I always like to end my posts with a quote from my favorite book, Us Against You, or another one of my favorites, Anxious People, both by Frederik Backman. I think I love both of these books so much because they capture everything I think, everything I want to say so perfectly. I’ll end this post with a quote from Anxious People. I chose this particular quote because I think it’s very true, even if it can be a little bit hard to accept. “We can’t change the world, and a lot of the time we can’t even change people. No more than one bit at a time. So we do what we can to help whenever we get the chance. We save those we can. We do our best. Then we try to find a way to convince ourselves that that will just have to…be enough. So we can live with our failures without drowning.”

Let’s Talk About the Stigma Surrounding Mental Illness

Fourscore and upward, I fear I am not in my perfect mind.

William Shakespeare

Weak, less than, sick, stupid, psycho, crazy.. the list goes on and on. Those are just some words that are used against people who suffer from mental illness. Words that are in our everyday vocabulary, words we usually don’t think twice about saying. But because of the stigma around mental illness, and what we are led to believe, those words, used in certain context, are now thrown around carelessly and without a second thought. And in turn has caused people suffering from mental illness, to believe those words themselves. It isn’t fair. It isn’t enough to say “it’s time to end the stigma.” We have to take action, help those suffering, and correct ourselves when we say something wrong. I think that the stigma surrounding mental illness is simple. Mental illness = weakness. Do you see the problem here? Mental illness is arguably the most stigmatized condition in this country. The stigma stems out of fear and ignorance. A lack of education, a lack of resources, perhaps a lack of empathy in some cases. It’s hard for me to understand why there’s such a negative stigma around mental illness. To me, understanding, supporting, and accepting a person with a mental illness isn’t a hard thing to do. It should be simple, it should definitely be the “norm.” I think that maybe people believe and fall into this negative stigma, because they themselves are afraid of developing a mental illness. It should not be that way. For a long time society has made us feel like having a mental illness is something to be afraid of, and then that produces a fear of mentally ill people. It’s a horrible cycle, that we need to break. The truth? The truth is that if you are one of the millions of people who suffer from depression, then you suffer from a mental illness. See, not so scary, right? Depression is a mental illness. Anxiety is a mental illness. Bipolar Disorder is a mental illness. OCD is a mental illness. Why are we so afraid of these illnesses , and the people that suffer from them? Because the stigma is so incredibly negative, and it’s in everything we do. Do you want to know the most obvious example of that? When we watch the news or read an article about someone committing a crime, and the first thing that is said about that person is that they’re either “mentally ill” or suffer from “some sort of mental illness.” We’re quick to use people’s mental illness as a scapegoat for the real problem in this country: the lack of accessible mental health care. The fact that sometimes people spin so out of control that they end up hurting themselves or others because they can’t get the help that they need. There is absolutely no reason why appointments with therapists or psychiatrists should be hundreds of dollars. There is no reason why medication should be hundreds of dollars. When it comes to mental health care, our country is failing us. It shouldn’t be hard to get help. But it is. And when people finally do get help, they struggle with feeling weak or less than because that’s what society tells us, what the stigma makes us believe. I know, because I am one of those people. My mental illness diagnosis is, Generalized Anxiety Disorder, Major Depressive Disorder, and disassociation stemming from my depression. So there you have it, I’m mentally ill. And I deal with the stigma everyday. My biggest problem is that I feel weak. I feel like it’s my fault. I feel like I’m not strong enough to handle all of the things that have happened to me. That’s what the stigma surrounding mental illness has done to me. I’m overcoming it, because I’m fortunate enough to have access to therapy and medication. I still struggle with my mental health every single day. Disassociation is something new that I have been dealing with, just over the past 2 months. That’s been scary. When I’m in a depressive episode, or having a panic attack, I disassociate. I feel out of touch with reality, I feel as though I’m outside of my body watching someone else live my life. I didn’t know what was happening to me until I talked to my therapist about it. I didn’t even know that disassociation was thing, because it’s never talked about. So I’m talking about it now, just incase there’s someone out there reading this who feels the same way. I’m trying to break the stigma one step at a time. I’ve realized through therapy that I’m not weak. In fact, I’m really strong. That’s the ironic part, I think. Society makes us believe that mentally ill people are weak, but I think that we’re some of the strongest people out there. The bottom line is: mental health is health. Mental health is just as important as physical health. Just like how you’re physical health matters, your mental health does too. If you’ve fallen into believing the stigma, it’s okay. Just try your best to be aware of it, and work on changing it, you can do little things. Don’t use the words “crazy” or “psycho” or “stupid” when arguing with someone. Don’t make fun of someone for the anxieties that they have. or the depression that they are dealing with. Just be there for them, listen & understand them. Like me, you can try to break the stigma one step at a time. To all my other mentally ill people out there; this isn’t your fault, you are NOT broken, and you are not worthless. You are amazing. You are strong. You are brave. We all make mistakes, believe something that isn’t true, or make assumptions about people before getting to know them. You never know the battle hat someone is facing, so let’s be kind to one another. Let’s all work on being better, together. I recently finished Anxious People by Frederick Backman (would 10/10 recommend, it was absolutely amazing). I’m going to leave you with one of the most important quotes from the book. “They say that a person’s personality is the sum of their experiences. But that isn’t true, at least not entirely, because if our past was all that defined us, we’d never be able to put up with ourselves. We need to be allowed to convince ourselves that we’re more than the mistakes we made yesterday. That we are all of our next choices, too, all of our tomorrows.”

Pregnancy on Methotrexate & the Need for Safe Abortions

Fight for the things that you care about. But do it in a way that will lead others to join you.

Ruth Bader Ginsburg

This post is going to be very open, very real, and it will probably offend some people. But I honestly just don’t care. If this post ends up offending you, then you aren’t the kind of person I want following me on my journey, so you can stop. I refuse to stop advocating for my health or any other woman’s health, I want my blog posts to educate people. I want to be a voice for the people that can’t find theirs. The situations I find myself in day in and day out are incredibly real, and I want to show every part of them, good and bad. So, I hope you can learn something by reading this today. Let’s talk about Methotrexate first. I did a very detailed post about it a few months ago, so feel free to read that as well. But I’ll go over the basics again. I take Methotrexate once a week, it is my immuno suppressant. It’s also a chemo drug, but it has been shown to help people with autoimmune diseases such as Lupus and Rheumatoid Arthritis. It basically stops my body from attacking itself, and it has 100% saved my life. It gave me everything back, the ability to move my joints, the ability to get down the stairs in the morning, the will to keep going even when things seem impossible. Above all, it gave me my quality of life back, and for that I will be forever grateful. There’s one catch though. I’m not allowed to get pregnant on it. In a lot of cases, Methotrexate is used to treat ectopic pregnancies. It can also lead to a greater chance of miscarriage and birth defects. Also, it can be very dangerous for the woman who is pregnant. The most severe birth defects that Methotrexate can lead to are neural tube defects that affect the brain, spine, or spinal cord. It can also cause defects in the collarbones, teeth, and eyes. It is incredibly dangerous for a woman to carry a child that she got pregnant with while taking Methotrexate, it could absolutely be life threating for me if that was to happen. The really raw, real & honest truth is, if I did end up getting pregnant on Methotrexate, I would have to get an abortion. I would not have a choice. And, I’m okay with that, because I have to be. It’s something that I’ve already come to peace with, because it’s something that I’ve had to think about a lot. I don’t like that I have to think about it, but it is a situation that I could very well end up in, so it’s not something that I can ignore. Of course, I plan on taking every precaution necessary to not end up in that situation. I have to be off of Methotrexate for 6 months before I even start trying to have a baby, and I also can’t breastfeed while taking it. But, if I ever did find myself in that situation, I hope that I would have access to a safe abortion. What’s going on in the country right now is scary. We have certain people wanting to take those rights away from us, and I’m terrified. And so many other women are terrified too. Because, anyone can choose to have an abortion, it’s not just me. My reasons might be different, but those reasons shouldn’t matter. I support any woman who chooses to get an abortion, no matter the reason or the situation. Because (and this may be shocking to people) nobody has the right to judge another woman’s decision to abort. It IS NOT your life. It DOES NOT affect you in any way. Women should not be afraid in the year 2020 that we are going to have our reproductive rights taken away. How is that fair? How is anybody okay with that? It’s so mind blowing to me that I even have to write this post. But I am. I’m writing to educate, I’m writing for my rights, I’m writing for all of the women who are so afraid right now. And, I also want to point out, that there’s nothing I want to be more in my life, than a mother. This post isn’t about not wanting to have kids. Nothing about this situation is taken lightly, none of the things that I have thought about have been easy to think about. I lie awake some nights terrified that I never will be a mother. But that doesn’t change the fact that I would have to get an abortion if I got pregnant on Methotrexate. And, I’ll say it again, I and every other woman need access to SAFE abortions. We need SAFE places to go. We need access to checkups, medication, reproductive education, and birth control. News flash: accessible birth control is non negotiable. These are OUR bodies, OUR choices to make. So, to all the women out there who have gotten an abortion, are thinking about getting one, or know somebody who has, I support you & and stand by you 100%. I am proud to be pro choice, I’m thankful that I was raised to be that way. This is real, unfiltered, messy life. These are hard choices, hard thoughts, hard situations. Don’t judge anyone for the things that they choose. I wish that this was something that I didn’t have to think about or talk about. But it is. I will stand up for what I believe is right, and I have no shame in that, So, again, if this post offends you, I don’t care. Abortion is a right, period. I hope you can all realize that, and accept it. I started this post with a quote from Ruth Bader Ginsburg, who fought for our rights with dignity and grace. She was the definition of what it takes to be a strong woman in a man’s world. I’m going to end with another quote from her, “real change, enduring change, happens one step at a time.” I definitely took that step today. Once again, abortion is a right, and please register to vote.

Grief & Guilt

To weep is to make less the depth of grief.

William Shakespeare

I’ve realized over these past few weeks that I’m becoming the person who always says “my therapist told me to do this” or “or my therapist thinks that this will help me.” Honestly, I’m happy to be that kind of person because it means that I’m getting the help that I need. So, keeping with that theme, my therapist thinks that I should write a post about my feelings of guilt and the grief that I have experienced. So that is what I’m going to do today. Like I said in my last post, writing has been hard for me recently. I have had no motivation to sit down at my computer and pour my feelings out. When I am feeling depressed, any and all motivation I might have to do anything goes right out the window. So, I’m trying to push myself to do the things that I know will make me feel better after I have done them, like writing a blog post. So, lets start with grief. Greif is a tricky thing, and I also think that it is a very personal thing. I don’t think that grieving is reserved for just death. I think that you can grieve anything that you’ve lost, or anything that has changed. And grief really, really sucks. I’ve been in therapy for almost 2 years, and I’ve only just begun talking about my feelings of grief. I think that I was scared to talk about it, because so often we are made to feel that you can only grieve after someone dies. But, I’ve learned that it’s okay to grieve the person that I was before I got sick. It’s been a really hard change, and grief is natural in this situation. I have layers upon layers of grief inside of me. There’s so much grief, that it overwhelms me at times. I have never taken the time to open it all up, and work through it. But, that time starts now because I can’t keep living with these emotions all bottled up inside. So, what do I grieve? I grieve the person that I was before Lupus and CREST, I grieve for her because she’ll never get the life that was planned for her. She’ll never have a healthy body, she’ll never get rid of the intrusive thoughts, and she’ll never be “normal”. I know using the word normal sounds harsh, but it’s true. Nothing about my life is normal, nothing about my body is normal, nothing about my mental health is normal. But, I’m learning to live a “abnormally normal” life, and I think that it’s working out pretty well. I grieve for my family, both them before I got sick, and them after. My health affects them just as much as it affects me. They didn’t have to worry about me or my health 3 years ago, but now they do. And, I grieve for them. Grief has been a very confusing thing for me. I go back and forth between feeling like it’s okay to feel this way, and feeling like I’m being dramatic, and that I shouldn’t feel this way. But, my experiences are my experiences, and if I don’t’ accept them, I’ll never overcome them. So that’s what I’m working on now, acceptance. Accepting that this is now my life, and my family’s life. Just more things to talk about in therapy, I guess. Now, on to guilt. This is a tough one for me, because it’s something that I struggle with every single day. And, like grief, I just started talking about my guilt, 2 years later. Guilt is a heavy thing to carry, some days I don’t know how I don’t collapse. Maybe it’s my strength, but some days even that shocks me. So, what do I feel guilty about? I’m guilty about grieving, I’m guilty about feeling bad about my situation, I feel guilty about how this has affected my family, and everyone that I love. I feel like this whole thing is my fault, that I was the reason that I ended up sick. On my worst nights, I think about how I must have been a bad person in a different life for this to have happened to me. Is that rational? Not at all, but try telling that to my irrational brain. What if I had been a different person, in a different life? I think about that often. And I feel guilty about that, because I really do have an amazing life, with a great family and a bunch of people who love and support me. But I do still think about those things, that’s being an irrational person for you. I know that I’m irrational because I am mentally ill, but it does not make those rational thoughts come any easier. Because I think it’s really easy for those irrational thoughts to take over, but I’m working really hard at listening to my rational side (in therapy, of course). I guess that this blog post is my first real attempt at unpeeling the layers of grief & guilt. Everyone has to start somewhere, right? I feel anxious, I feel vulnerable, I feel scared. But maybe by writing this post, I’ll help someone else who is feeling the same way. That’s all I’m really trying to do. Okay, you all know what time it is now, time for a quote from Us Against You by Frederik Backman. “Grief is a wild animal that drags us so far out into the darkness that we can’t imagine ever getting home again. Ever laughing again. It hurts in such a way that you can never really figure out if it actually passes or if you just get used to it.”

World Suicide Prevention Day

The time of life is short; to spend that shortness basely were too long.

William Shakespeare

*TRIGGER WARNING: I talk about suicidal thoughts in this post.* Today is World Suicide Prevention Day. I contemplated writing this post today, because I’ve been struggling with my mental health recently. But this day is important to a lot of people, including me, so I’ll write. 2 years ago, I was at the lowest point in my life. Truthfully, I didn’t want to be here anymore. I struggled with those thoughts for months. It was terrifying. I wasn’t myself. The constant thought in my head was “how can I live the rest of my life this way?” That’s all I thought about 24/7. I was so lost, so confused, so hurt. You want the really honest truth? I almost did it. I came pretty close. I was probably just a few weeks away from shattering my whole family’s entire world. I’m so glad I didn’t. My family realized how bad I was doing, and intervened before it was too late. They got me in with a therapist, and then a psychiatrist. I was put on medication. I truly improved so much. And since then I’ve been doing really good. But within the last 6 weeks, I feel my depression pulling me back in. I’m trying so hard to keep my head above water, but some days it feels impossible. I’m nowhere as bad as I was 2 years ago. It’s normal for depression to come and go. It just really, really sucks. I’m thankful that I’m able to talk to my therapist every week, and I’m incredibly thankful for the coping mechanisms that I have been given. But I still struggle. The bottom line is I just feel sad. I feel anxious. I feel detached from reality some days. Sometimes I feel like I’m outside of my body watching myself live my life. My therapist says I’m disassociating, All I know is how I feel. I know I’ll be okay, because I’m strong as hell. And I have so much to live for. I’ll throw in a quick line from Us Against You by Frederik Backman, “sometimes people have to have something to live for in order to survive everything else.” I agree with that wholeheartedly. What do I live for? my family, my friends, my dog, my jobs, the Penguins and everything else in between. Because I would have been gone a long time ago if I didn’t have those things. Throughout this whole journey I’ve never had a problem with being vulnerable. I’ve been second guessing that recently. I have been scared to be vulnerable. I don’t really know why. Maybe it’s the anxiety. Maybe it’s the depression. Maybe it’s something else entirely. I talked about it in therapy yesterday, and my therapist told me that I should write a blog post, even though being vulnerable right now is scary. She thought that if I did, and was honest about my fears, maybe I would help somebody else that’s feeling the same way. So I thought that today would be perfect. Today is a day that reminds me of how far I have come in my mental health recovery, and how far I still have to go. I’m proud to say that I am very much still a work in progress, because that means that I’m still here. And that’s something to be pretty proud of. To whoever is reading this, know that the world is a much better place because you are in it. It’s okay to not be okay, and it’s okay to need help. You matter. Mental health matters. Your mental health matters. Just stay. I’m currently reading Anxious People by Frederik Backman (yes the author of my favorite book that I always quote). I just started it, but there was one part that has really stuck with me. I think it sums up anxiety and depression and suicidal thoughts pretty well. “Sometimes it hurts, it really hurts, for no other reason than the fact that our skin doesn’t feel like its ours. Sometimes we panic, because the bills need paying and we have to be grown-up and we don’t know how, because it’s so horribly, desperately easy to fail at being grown-up. Because everyone loves someone, and anyone who loves someone has had those desperate nights where we lie awake trying to figure out how we can afford to carry on being human beings. Sometimes that makes us do things that seem ridiculous in hindsight, but which felt like the only way out at the time.” Please just stay. If I can do it, I promise that you can too.

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, fiancĂ©, 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.”