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, fiancé, wife and mom. Because I know that I can be difficult to live with, even to be with sometimes. But I try my hardest. I don’t think that you can become a different person, but I think that you can become a better person. That’s really all I’m trying to do. If you struggle with anxiety, please know that you are not alone, even though it may feel like it at times. If you get up every morning and stare anxiety directly in the face and decide to live your life that day, I’m proud of you. Remember that anxiety doesn’t make us weak, it makes us strong. As I said in my last blog post, my favorite book of all time is Us Against You by Frederick Backman. I’ll end this post with one of the most profound lines. “Life is a weird thing. We spend all our time trying to manage different aspects of it, yet we are still largely shaped by things that happen beyond our control.”

3 Years

All’s well that ends well.

William Shakespeare

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

My Mental Health Part 2

Wisely and slow; they stumble that run fast.

William Shakespeare

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

Feeling Invisible

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

William Shakespeare

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

National Siblings Day

Love sought is good, but given unsought is better.

William Shakespeare

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

Coronavirus Pandemic 2020- Through The Eyes Of An Immunocompromised Person

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

William Shakespeare

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