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Sometimes You Just Need an Outlet

Writing has always been an outlet for me.  I did well in college because I absolutely enjoyed doing research and expressing myself through words.  I’ve thought about blogging as an outlet before, but until talking with one of my relatives today and hearing about her husband using a blog as a form of expression, I didn’t seriously foster the idea.  I thought about it for a couple hours today and here I am, spilling my guts to a keyboard.

Rather than make this a specific themed blog, it will just be all the things I enjoy…

I like to think I’m a fairly well rounded individual, so the list of what I enjoy might be long.  I can see myself writing about anything from my travel experiences to the products I use to day to day life and back again.  Mostly I want this to be a way to express myself, but I also want to share with all of you and I hope you find some value or humor in the things I have to say.

Anyway, it is almost midnight and I’m still dealing with cooking the most ridiculously huge pot of spaghetti sauce before bed, so I am going to get back to that and I’ll be back soon to start pouring my heart out to the internet.

Beautifully Bipolar… A Mental Illness Story.

Here’s the thing about mental illness, you don’t know how to navigate it unless you have it, but even then, you don’t know how to navigate it. 

I spent a lot of years thinking so many things I was dealing with were just normal things everyone goes through and that I was probably over exaggerating and being dramatic. Think TikTok videos… “I’m not the drama. Wait. Am I the drama?” I spent so much time trying to hide how I was feeling that it became uncomfortable to even face reality. So uncomfortable, that I would intentionally make myself so busy that I just flat out didn’t have time to face reality. I stayed so damn busy for so long and stuffed my feelings for so long that I legitimately made myself physically ill more than once. There were days when it took all my energy just to get out of bed, but I’d manage to put on a happy face and survive my day. Work would end and I’d immediately go to bed from the sheer exhaustion of being a human. This would sometimes go on for weeks. Then I’d wake up one day with a ton of energy and feel “normal.” Normal, to me, meant having endless energy and being able to get all the things done that I didn’t do for the previous few weeks cuz all I could do was work and sleep. 

This is a story… a story of madness of a high functional variety. If it is too much for you, that’s okay. I get it. It’s too much for me most of the time too. 

Let’s back up to where I remember things starting. If I am really being honest, this started much earlier in my life than I realized, possibly even at birth. I have some pretty clear memories of times in my teenage years where I did some pretty manic shit, but we can start where I feel like a big shift happened. I think I was around 24 (I’m almost 38 now, for reference) when I had my first brush with madness. I would have these intense bursts of emotion and irritation where I just couldn’t be nice. This was the first time I went to the doctor and said I was “crazy” and needed help. I was a young woman at the time, so naturally, it was easy to diagnose my “crazy” as something hormonal. We called it Premenstrual Dysphoric Disorder (PMDD). This was a fair diagnosis because there had always been a cyclical quality to my moods and it did sometimes align with my menstrual cycle. The first solution was birth control pills. Guess what happened? Things went from bad to worse. I felt like I added menstrual rage onto whatever was going on in the first place. It was not good. So, it was back to the drawing board, and the next solution was a daily antidepressant to cure my PMDD and hopefully tame whatever I was going through. That little pill made me feel the worst I’d ever felt in my life to that point. My first brush with insomnia came with this medication. I was either crying, pissed off, or totally apathetic pretty much every day for a year. I really gave it a college try, mostly because I was trying hard to keep my then boyfriend/fiancé from running for the hills with his hair on fire. Spoiler alert, he didn’t run for the hills, thank God. At some point, I was a really terrible patient and just stopped taking it. I pretty much gave up on medical management at that point.

Then came the 10 years of just trying to self manage this, which is a joke, because I was just masking everything with being busy. From 25-35 or so, I stayed busy, like REALLY, REALLY BUSY. I decided to get my Bachelor’s Degree in Health and Business Administration. I was also working full time. When I say I went back to school, I mean I went BACK with guns blazing. I refused to get anything less than an A in a class. I think my first B in college didn’t come until my last year of my program, and I had an epic meltdown over that B. Looking back from where I sit now, I know that was a very unhealthy response to what most would consider a pretty damn good grade. I went to school full time and worked full time for 5 years. I walked away with a 3.9 GPA and an unhealthy addiction to drinking coffee at all hours of the night. I also walked away with my degree and an overwhelming fear of how I was going to fill the time that was spent studying for the last 5 years. Every single time I slowed down, I had to be alone with my thoughts, which was so much worse than taking on too much constantly. College came and went, and I lucked into my first post collegiate job pretty quickly, with the company I still work for. It was a sales job with a large territory. Perfect for keeping yourself busy constantly. I still do the traveling sales gal bit, but my approach to it is much different than it used to be. So from 30-35, I ran myself ragged and made a name and a career for myself. A lot of good came from the period of time where I didn’t seek out treatment and just stayed busy, but it didn’t come without a cost. 

Fast forward to January 2020. A lot of personal things had been bogging me down for awhile, including a friendship that came to an abrupt end that hurt my heart in ways I still cannot express. I started really falling into a rut and was using a lot of words like “depressed,” “hopeless,” ”exhausted,” and “lost” in conversation. I was fortunate enough to have another good friend pick up on it and tell me I needed to go talk to a doctor. I’ll never forget that moment. The conversation actually occurred over text message and I am forever grateful for that moment. I don’t know what it would have had to happen for me to go in had it not been for that conversation. Mind you, while all of this was going on, I was still functioning at work and at home without a huge noticeable difference to others, although there was a huge cost to me during all of this. I went in to see my primary care provider (another incredible blessing of a person), who diagnosed me with some form of anxiety and depression. She started me on a new antidepressant, and I went on my way. When I started the med, a big red flag went up, that I promptly ignored. I went from really down to incredibly elevated really fast. I was so elevated that I didn’t sleep for 4 nights, basically at all. However, instead of calling my doctor and telling her, I just assumed this was a normal side effect. In case you were wondering, not sleeping for 4 nights is a side effect of methamphetamine, not antidepressants. For the record, I did not consume any methamphetamine during this time or any other time. Just some clarity. 🙂 

That initial elevated mood and insomnia subsided some, and I continued taking this medication for maybe 9 months or so. I started to notice that my moods were up and down again, and when they were up, it wasn’t really a happy thing. I was like a pissed off Energizer Bunny. Imagine feeling really energetic and also wanting to hurt someone all at once. No bueno. My anxiety levels were also seemingly high, so I went back in to my primary care provider and we switched to a newer age antidepressant. I felt some initial relief, and continued to take this one for another 6 months or so. It was most likely helping some of the anxiety I had been struggling with, which probably explained some of the relief I was feeling. 

Fast forward to August of 2021. I started noticing I was feeling highs and lows again, to the point where other people had even started to notice and say something. I can clearly remember my husband and I having a teary conversation, where he told me “your highs are so high, but your lows are alarmingly low.” I cried and cried that day because I felt so deflated and defeated knowing that I needed to go back to the clinic again. At that point, I really felt like I was on a never ending journey. There are 50 some odd antidepressants on the market and I had begun to feel like I was just going to have to try them all just to feel normal. 

That visit with my primary care provider happened on a hot day. Another memory that’s etched in my brain was the moment when she looked at me and said, “I don’t want to scare you or anything, but this sounds a lot like bipolar disorder.” I told her I wasn’t afraid, but I was lying. I was terrified. I was overwhelmed by the stigma in my own psyche. I went through almost a grief cycle where I felt like I was mourning some old version of myself despite nothing really changing other than the mention of a word. This is where the journey took a huge turn for the better, surprisingly. She referred me to a psychiatric nurse practitioner and everything has started to fall into place. My psych got me off of the antidepressants and their disastrous side effects. Fun fact, with bipolar disorder, an antidepressant can cause mania or hypomania. Remember way back in the story when I didn’t sleep for 4 nights and thought that was normal? Turns out, it wasn’t normal. After I came off the antidepressants, I have been gradually adding and increasing medications that are for bipolar maintenance, and I can honestly say this is the best I’ve felt in nearly 15 years. There are still episodes and I have to work hard to be aware of triggers every single day, but I feel good more than I feel like shit, and I am not afraid to be alone with my thoughts anymore. 

I know this one has been long, so if you’re still here, I want to make a few more points. The stigma around mental illness is very real. I am living, breathing proof that it is possible to function and have an illness like bipolar disorder. Yes, of course, there is a spectrum and it certainly doesn’t look the same for everyone. Statistically, about 2.8% of adults in the US have bipolar, which means you likely know someone who has it whether you’re aware or not. For many of you reading, I might be that person but there could very well be more. There is a whole community of people on social media who I’ve been fortunate to learn about that are out there spreading awareness and doing amazing things in the world. Another point I’d like to make is that if you are struggling on a mental illness journey, please don’t give up. I fully understand how challenging it can be, and so many have ridden this roller coaster a lot longer than I have. I also know that my ride on this roller coaster isn’t over and I will inevitably struggle again. However, if you’ve reached your breaking point, just don’t give up. Keep pushing forward. If you’re reading this and you relate to it, don’t interpret that to mean anything more than that you relate to it. It’s okay to feel empathy or relate to a mental illness story. As a matter of fact, that’s exactly how we stop the stigma. 

Low

A low point. A lull. A dark place. Depression.

I would put money down on the fact that none of those words or phrases sparked good feelings in you. Yeah, me either. However, sometimes they are my reality… like right now.

I am in a pretty weird place mentally right now. I can’t explain why I feel like I do. I can even rationally and objectively say that there’s no real reason for it. I woke up in fog like 10 days ago, and besides a slight break when I was visiting family and had some excitement and happiness around that, I feel like I can’t shake it. I am tired… no, exhausted, in a way that I can’t describe other than to say that sleep doesn’t help. I wouldn’t say that I feel sad, but I definitely feel pretty apathetic. I am having a hard time relating to anyone so I’ve been pretty much sticking to myself unless I have to be around others. I guess that’s what the mental health world would call self-isolation.

I have been dealing with some mental health stuff for a few months now that I’m not ready to go into detail on, but it’s been a lot to process. I spent so much time and energy trying to understand it that I honestly think I totally zapped myself of all energy. I am still my highly functional self at work, but when the day is done, I feel like all my energy went into work and I have nothing left to give to friends, my husband, and family. I have been fortunate that I have had several days where I was scheduled to be off during all of this. I haven’t worked out in over 2 weeks and, while I know I need to, I haven’t been able to make myself. Maybe some of it is the social aspect. I absolutely love doing CrossFit and thoroughly enjoy the people I work out with, but I am so afraid that they’ll see me like this that I’ve avoided going. I told myself that I would work out this afternoon. I am going to try to keep that commitment to myself.

Normally when I write, I try to approach the world in a positive way. Forgive me, but today, I just can’t. I am honestly only writing in hopes that spilling my guts onto a keyboard and screen will give me some perspective. Here’s the honest truth, I am tired, self-isolating, and down. I know I won’t be here forever. I know the fog will lift and I’ll see the sun again. I don’t know when, but I know it will happen. That said, how I feel right now really friggin’ sucks. It might not be the most positive and uplifting thing to read, but it is reality. One of the things that I pride myself on is being willing to be open and honest and show you who I really am. It is a goal of mine to use my platform to show reality, even when reality isn’t all that pretty. Currently, on a lot of days, it takes all my energy just to get out of bed and look like a human. Then I scrape more energy together to get through my work days. I feel really foggy when I go into conversations, but I think I am doing an okay job of faking it when I need to. Faking it… not ideal but also a reality for many of us.

Maybe sitting here writing this will help. Maybe it won’t. It’s okay if it doesn’t and it would be great if it did. Either way, I will be okay, and if nothing else, I feel less alone when I am “talking” in this blog. Sometimes the starting point is just saying “hey, I’m not okay right now.” It is okay not to be okay… and today I am not okay.

Secret Time…

Secret time…

I am a fitness junkie who is unhappy with where my body is at right now. Like so many others, I gained some weight in the last year or so.

It feels like a dirty secret to say that I am not in love with my body right now. It hurts my heart to say it and I feel like others will judge me for saying it. Here’s the truth, I let myself stop caring about myself during all of the trauma and chaos that was the 18 months of my life. I continued to work out, but not wholeheartedly. I quit even trying to eat healthy. I drank too much. Yes, it was a rough time filled with a pandemic, multiple deaths of friends and family, and dealing with my own disease. No, that doesn’t make it acceptable.

I think what hurts the most is that not only do I not like my body right now, but I do have an invisible “forever” disease that makes it so important to make my health a priority. So I am in a bad place both mentally and physically. Body image and dysmorphia has always been there but I have learned how to love my body for what it is capable of, which is so much. I’ve felt that fading recently, even. I know my body does amazing things, and I am grateful for what it gives me, but I need to get back to loving myself. Before anyone starts giving me advice, I do understand what I need to be doing and have already started working towards some new goals.

Another thing, my goal is not, nor was it ever, to be thin or skinny. Yes, I would like to like what I see in the mirror, without a doubt. However, the most important goal I have for myself is to get back to feeling healthy and happy in my body. There isn’t a “goal weight” or some number that is dictating the goals I set. It is more about a feeling I want to achieve and I will know when I start having that feeling again. I want to be intentional about fueling my body and working out. I want to be consistent again.

So, with all of that said, I am fighting another mental battle. I am totally in favor of body positivity, but it has come to a point where body positivity sometimes can feel like it’s a new form of shaming. I would NEVER condone body shaming anyone, and trust me when I say that I know I am body shaming myself and it isn’t a good look. However, being told repeatedly that I shouldn’t want to change my body almost makes me feel like I’m being shamed for wanting to make changes to my body to better my health. I am incredibly happy for anyone that feels healthy and happy. I am incredibly happy for all who are comfortable in their skin and I honestly am striving to get there again. I just don’t want to feel bad because I am not there now. I know that my reactions to things are within my control, and I am trying to work on managing that. There isn’t an amount of memes or inspirational messages that can make me love my body. That is something I need to work through and make happen on my own. I need to work on getting healthier in my mindset, so that’s what I will be doing. I won’t be doing it because someone else told me to be body positive. I will be doing it because I know how great it feels to be comfortable in your skin, and I miss that.

I really just wish we could normalize letting people be where they are and supporting them through it, whether they are totally comfortable in their skin and feeling confident, or making changes to get to that point. If you feel good in your skin, please be confident as hell and share it with the world… it is contagious. Show up and support your people whether they are feeling as good as you or trying to get there. When a friend makes a choice to start working out or eating differently to make themselves healthier, support the hell out of them. Deciding to make a healthy change is hard. When a friend is feeling themselves, support the hell out of them. We forget that it takes all kinds and everyone is striving for the best life. That might look different for each of us, but we can still be there are support one another.

I will find my happy space again. In the meantime, I promise that I will support all of you whether you are already in your happy place or trying to get there. I don’t hate my body, but I need to learn to love it again.

Not So Rare.

This is going to be a long one… so, either close out now or get comfortable, I guess.

Lately, I have been trying to go through some things quietly because I don’t know how to express myself, perhaps. If you know me, you know that it is a rare day that I don’t know how to express something. My journey with rare disease officially started with my diagnosis of Fabry’s in October of 2013. It has been a weird and long road since then. It really started long before that. Obviously, since this is genetic, it technically started at birth.

 I honestly think that it really started for me when my mom had a heart attack at age 49. At the time, we had no idea about the Fabry’s. We just knew she had an early heart attack that wasn’t actually caused by blocked arteries. It was weird, but it was real. Some time after that, a cousin was dealing with kidney disease/failure for unknown reasons and thankfully a doctor decided to dig deeper than just treating the symptoms. A genetic panel revealed the Fabry’s. Then, my uncle had a massive stroke in his early 50’s, which ultimately brought him to his death 5 years later. That was just over a year ago.

Since he passed, I have been fighting some internal struggles as I was not treating my Fabry’s. For the record, I was being compliant and working with doctors to basically cautiously wait. It was pretty much agreed upon that if I started showing any major changes or symptoms, I would start treatment. At that time, the only treatment available was an infusion every other week that took hours. Obviously, that is a lot to absorb into my life for any of you that know the kind of schedule I keep both at work and in my personal life. I also was cautiously waiting because there was a pill form of treatment that was being studied at the time.

Since my uncle passed, my stress level about cautiously waiting has skyrocketed. I made the decision a year ago to start the pill form of treatment. It sounds simple, but not so much. I had to undergo more genetic testing to ensure my genetic variant (basically the piece of my DNA that is broken) was amenable to the pill form of treatment. I also am dealing with navigating through patient assistance and other issues related to paying for this med. It is over $300,000 a year, so we aren’t talking about a med I can go to the local pharmacy and grab on my way home from work. So, last May I started working through all of this and thought my care team was on board.

Fast forward to today… almost a year later, and I am in the process of hopefully securing a new care team. Without going into too much detail, I stopped hearing from my previous doctors and in spite of leaving messages and other things, I am still sitting here not being treated. In addition to that, I was able to access my medical records and a year ago, there were some alarming changes in some of my cardiac tests. As I stated above, my mom had a heart attack in her late 40’s. I am 37 today… and, as you can imagine, cardiac changes definitely scare me. I am hoping that I will be able to better understand what is happening in my body soon and that I am on the path to treating this damn thing.

I guess that’s my back story… as far as my mention of dealing with things quietly, that has more to do with the mental stuff. Obviously, the pandemic has brought with it a myriad of mental health issues for so many people, and I was not exempt from that. Add in rare disease, a couple deaths in the family, and trying to navigate getting the right doctors in place, and my anxiety level has been high. It has definitely been worse the last several weeks. I feel myself withdrawing a lot more and trying to internalize things because I don’t want to force my problems on anyone else. Anxiety will also have you thinking you are having a heart attack sometimes, which doesn’t help anything.

You want to know what the toughest thing about all of this is? No one understands this disease. Hell, half the time I have to bring my doctors up to speed on what it even is. Trying to talk to my friends is basically pointless. They can’t relate so they don’t have anything to say, and I feel more alone when I do try to talk to them. My family understands and I love them for it, but sometimes I just want to talk to someone outside my family unit and have them understand. Sometimes I just want to cry and its hard to do that except when I am by myself.

I have tried really hard to be a voice of positivity in all of this, and I generally have a very good attitude about it all. My life is better because I value it more. I take the trips and do the fun things. I spend time with those that matter to me. I rarely turn down a glass of wine and conversation with a friend. That said, I still have some really down days and lately I feel like I have been dealing with the less positive side of all of this. My heart hurts and my spunk is lost for now. I am scared, more often than I want to admit, about what could be next for me and my family. Losing people you love sucks… and watching them suffer also sucks. Worrying about if an when something might happen to you also sucks. Its just the truth, even if it sounds negative.

I am hopeful that I can start treatment soon, but I am also just going through a lot of emotions right now. Despite this having been going on for so long, some days I feel like it is brand new to me. The reality of it has always been there but it is hitting hard these days. I know that I will be around for a long time, or at least I assume that, but it sucks to be 37 and really wondering if I will be dealing with major heart problems sometime in the next 10-15 years. Mostly, I just want to feel comfortable and safe talking to people. I want people to at least try to understand and be willing to let me vent. I don’t want to be dealing with this by myself. I don’t want to be crying alone anymore.

 I know that I am not the only one dealing with this kind of dilemma and I just hope that, if nothing else, maybe my experience will be relatable to someone who is struggling similarly and that they will know that they aren’t alone.

Beautifully Bipolar… A Mental Illness Story.

Here’s the thing about mental illness, you don’t know how to navigate it unless you have it, but even then, you don’t know how to navigate it.  I spent a lot of years thinking so many things I was dealing with were just normal things everyone goes through and that I was probably over exaggerating…

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Low

A low point. A lull. A dark place. Depression. I would put money down on the fact that none of those words or phrases sparked good feelings in you. Yeah, me either. However, sometimes they are my reality… like right now. I am in a pretty weird place mentally right now. I can’t explain why…

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Secret Time…

Secret time… I am a fitness junkie who is unhappy with where my body is at right now. Like so many others, I gained some weight in the last year or so. It feels like a dirty secret to say that I am not in love with my body right now. It hurts my heart…

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Letting Go… Maybe?

Letting go… one of the hardest concepts in life.

Think about all the things that are hard to let go of. Right down to material possessions like old clothes and homes, I think humans really struggle to let go. There are things that are harder to release yourself from like memories, both good and bad, people, thoughts, whether negative or positive, our own toxic traits, and so many other things.

As I think about the year 2020, one of the things I struggled with the hardest was letting go. I’d guess that everyone has had some struggles this year. This has been a year full of “will things ever be normal again?” We have clung so tightly to what once was that, at times, it has been difficult to enjoy where we are now.

My inability to let go has taken so much joy from my days in the last year. When I say that, I know I am judging my own feelings, which is not okay, but I am choosing to hang on to this, and I know that. I have been in situations that have been incredibly difficult this year. There have been lost loved ones, friendships that have ended, moments of incredible uncertainty, mourning the loss of what once was in my job, and a ton of time spent alone to agonize over all of the above.

Here is the thing, we ALL carry baggage. Even people who will tell you to “just let it go,” are carrying full suitcases of shit from their past. Ever had a situation cause you to struggle to trust others? Baggage. Ever carried old hurts into new relationships? Baggage. Ever let your childhood trauma cause troubles in your adult life? Baggage. I could go on, but you get the point. Is we’re going to carry baggage regardless, how do we do it in a healthy way?

Resolutions are definitely ridiculous and often don’t end favorably. That said, maybe what I need to do in 2021 and beyond, is learn to let go of certain things and carry the rest in a better way. Maybe the best thing to do is remember that while 2020 was insanely challenging, I have never had a year where I learned more.

Despite all the tears, loss, and struggles, there was beauty that came out of a tough year. I learned to let go of my fears and judgement and recognize that I have feelings, lots of them, and feeling them is better than constantly stuffing them. I learned that I am blessed by some really true friendships that have helped me through some big challenges. I also learned that there were some friendships that just weren’t meant to be that I will always miss, and maybe never completely understand the loss of. I have learned a lot about death, grief, and loss, including a solid working knowledge of how I process grief. I have learned that my thoughts about things control my feelings, and not the other way around, which means I am capable of changing my own narrative if I focus on thinking differently. I have basically learned to get real with myself, even when it’s the hardest thing to do.

Maybe I don’t have the whole “letting go” thing down yet, and maybe I never will. Maybe, just maybe, it is okay to hang onto some things when you clean out your closet. When you dig deep into your closet, you almost always find that awful crop top you wore in your early 20’s, and its easy to put that in the donation bag… however, you probably have some fun memories made wearing that thing that you can keep without hanging onto the actual shirt. Odds are, you also have some less than stellar memories in that crop top, which you can also hang onto… but find a new shirt too, make memories in it, learn lessons wearing it, eventually get rid of the actual shirt, keep more memories, but keep the ones you choose to keep. You can do the same with the stages of life. It is possible to accept that that phase (the crop top phase) is over, let go of what you choose to and keep what you choose to.

Here is to a happy and healthy 2021, full of new experiences, lessons, and hopefully a lot of love for ourselves and those around us.

The Sham that is Self-Care.

Self-care seems to be the latest trending fad. Everything is self-care and honestly, I am over it. Yes, there is value in self-care, but most of the time I think we are missing the point.

Is self-care a spa day or a manicure? Yes, of course, that could be a form of self-care, but there is so much more to it than that. Sometimes you absolutely need to prioritize getting a massage, or a facial, or a new haircut. Without a doubt, that is self-care in one form. That said, I don’t think stuff like that is even the tip of the iceberg when it comes to caring for oneself.

Another thing I feel like I have encountered, and probably done plenty of myself, is the idea that we need to remove everyone from our lives that is “toxic,” while failing to acknowledge that we are also toxic. Is it important to remove or unfollow people that make us feel shitty? OF COURSE. However, we also need to realize that we might be the person someone else is unfollowing because we make them feel shitty. It’s not a one way street. EVERY SINGLE PERSON WALKING THIS PLANET HAS TOXIC TRAITS. No one is exempt. Self-care also doesn’t mean that we don’t have to care for anyone else. “I’m doing me” does not mean that we don’t have to be there for anyone else. Being a good friend and human is also important. I can tell you from my own first hand experience that pushing others away in an attempt to better ourselves ends so badly. I have watched friendships and past relationships blow up in my face because I failed to take care of the people I cared for while only worrying about myself. Eliminating interpersonal relationships because you are “doing you,” could, in theory, be a means of self-care, but it is a lonely road.

You want to know what I am doing lately to care for myself?

I am learning to allow myself to feel all of my negative emotions and be okay with that. I am acknowledging that I will probably always carry around a high level of anxiety and learning that it is okay, despite it being the most emotionally wrenching thing in my life. I am spending time alone and writing down my thoughts, no matter how vile they may be. I am learning that I judge myself entirely too much, and trying to learn how not to do that. It isn’t easy, but it is a form of self-care.

I am learning that I am not the person I thought I was. I am not capable of always being an extrovert, and honestly, people exhaust me. I am realizing that forcing myself to be social when I don’t feel up for it actually hurts my relationships more than it helps them. Despite feeling some sense of FOMO, sometimes I just need to say no to plans because I need mental rest in order to show up better for the people I love.

I am someone who feels like perfection is possible, but for some reason I think I need to be perfect at everything I do. I always have. It is probably some sort of coping mechanism of children with traumatic upbringings or something. Regardless, I have set a standard for myself that is impossible, and while I know that logically, it doesn’t stop my inner self critic. I have to constantly be working on the idea that sometimes a B effort is good enough and not everything has to be an A+.

I am also working on the concept that it is not circumstances that cause my reactions to things, but my thoughts about said circumstances. Even if someone looked me in the eye right now and told me I wasn’t looking my best, that is merely a circumstance. My thoughts about what that means are what is causing me to have negative feelings. Today, for example, my circumstance is that I am tired and not feeling 100%. Instead of just accepting that, my mind automatically thinks I am not going to get anything done today which causes me to feel inadequate. My goal is to be able to think “I might not get the house cleaned, but this is a great time to catch up on some reading or watch that movie I have been wanting to watch.” I’d love to be able to do that and feel like I did exactly what I set out to do today, to rest.

My point is that self-care, as we mentally portray it, is entirely inaccurate. More often than not, it is the tough stuff. The stuff where you dig deep into your soul and really look at yourself to try to clean up some of your toxic traits to live a healthier life. Sometimes it is getting the damn massage, but also not feeling guilty that you took a time out to do it. Sometimes it is admitting to yourself that you are, in fact, toxic, and that it isn’t always everyone else around you. Sometimes self-care is knowing that you are “doing you,” but taking a time out when a friend needs you, even when it wasn’t convenient. Sometimes, self-care is saying no to plans because you know damn well that you can’t show up how you want to… and NOT having FOMO about it. So, by all means, enjoy a spa day or a red wine bubble bath, but also take some time to do the tough stuff.

Clumps of Dirt, a Memoir.

Have you ever picked up a clump of dirt and then had it fall apart in your hand into smaller pieces? Some days that is what I feel like when I try to pick up the pieces of myself and be whole again. I feel like I have spent so much time in the last 6 months telling myself everything is going to be okay instead of dealing with how broken I feel. Before I continue, I should clarify that this isn’t me whining about my life. This is me acknowledging that sometimes you just cannot pick up all the pieces. Sometimes you have to pick up what you can to start to rebuild and recognize that some of those pieces either aren’t ready to be picked up or maybe they need to be left behind and you’ll find a piece that fits just as well later.

This blog isn’t even a “2020 has been hard” story. We know that, we get it, we all friggin get it. Here’s the deal. I am broken right now, and I don’t know why. Was 2020 and its bullshit the catalyst in me breaking? I have no idea. I actually have started to wonder if in some ways, this year forced me to slow down enough to actually realize there are some things that I haven’t been taking care of within myself. I think this year has forced a lot of us to take a good hard look at life and spend some time alone with our thoughts.

There is the unfortunate reality that I am trying to cope with some mental health issues. I referenced this is a previous blog, but lets just say I am still working on it. Anxiety and depression are definitely not things I anticipated dealing with. I think I have, on some level, always been a high functioning person with anxiety. We can psychoanalyze the hell out of this, but bottom line is that it definitely goes back to when I was a kiddo.

Sadly, when you are dealing with mental health garbage, there is always collateral damage. I have lost friends and had struggles in my relationships with family and friends this year. I haven’t lost my shit on anyone or had a huge fight. I have simply been unable to be as present as I have been historically because I am struggling to be people-y and some days are worse than others. I am 100% positive that in most cases, I have failed to adequately explain to people why I haven’t been as available as I have been in the past. This has lead to hurt feelings and a lot of texts saying “are you upset with me?” Most of the time when I get those, I stare at my phone confused, thinking “what? No!” My own husband, who would move mountains for me, has had to ask this. I will tell you all right now, if you are one of these people who has reached out, I am very sorry that my stress caused you stress. No one deserves that.

Another thing that I have recently realized is that I have not been giving myself the rest that I deserve. A very dear friend has helped me realize that stress is stress, whether it is emotional, mental, or physical. I am taking a little hiatus right now from some of the things that I can. There are things in life that are stressful but are also “have to” things. Those I obviously can’t take a break from, so I am resting my body from intense exercise and choosing to screen calls, texts, Facebook messages, snapchats, Instagram messages, and all the other messages more. It isn’t necessarily that I am not returning them, but I am choosing to return them when it isn’t necessarily an “OMG, I don’t want to deal with this now” moment. I am prioritizing going for walks, reading, getting some extra sleep, and just letting myself feel my feelings. Some days there are A LOT of feelings… those days I am probably more tuned out to the world.

It’s a hard thing, really, choosing to deal with your own mental game of tennis. On one hand, you don’t want to pack up and live there, but on the other, sometimes you have to spend a long weekend there to recognize the underlying issues that lead you there in the first place. It is kind of like saying to yourself, “alright, lets pack up the car for a few days in Bismarck, ND in January.” No disrespect to North Dakota, but I certainly wouldn’t spend a long weekend there in the winter if I didn’t have to.

I keep trying to remind myself that, like all things, this too shall pass. It isn’t always easy, but I am trying to extend some grace to myself for now. I feel like I have to until the clumps of dirt are a little less crumbly and I can pick them up again.

By Definition…

Anxiety-
Noun (plural anxieties)
-a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome
-desire to do something, typically accompanied by unease
-a nervous disorder characterized by a state of excessive uneasiness and apprehension, typically with compulsive behavior or panic attacks

I have been trying to write about this for a while. I have been trying to put my thoughts into writing on anxiety and mental health. Ironically, the thought of writing about anxiety gives me anxiety. As a person who struggles with multiple forms of anxiety, the irony of that is comical to me. While I do have some fear of judgement related to speaking openly about a mental health struggle, I also recognize that a lot of people are struggling with anxiety in some form during this incredibly uncertain time.

2020 has been an interesting year for me. It started with the realization that I was going through some mental health stuff and I needed clinical help to cope with it. Then came a death in my family followed by an immediate pivot into pandemic and quarantine. Now we are into a period of civil unrest in our country. Listen, that’s just the big stuff. Intermingled in that are feelings of fear, uncertainty, struggles with family and friends, and a new level of exhaustion. I can only imagine so many of you are dealing with a lot of similar feelings.

I am going to start out talking about the basics, first. Every single person has an amygdala in their brain. It controls things like memory, decision making, and emotional responses. When things get crazy or scary, the amygdala sends signals to the hypothalamus and the sympathetic nervous system is activated. That, my friends, is your fight or flight response that ultimately sends adrenaline into the blood. Fight or flight is an important response in the body. It protects us in the worst situation. It shuts down things like digestive functions, hunger, and thirst to help us get thru imminent danger. A person who struggles with anxiety has an amygdala that is on overdrive. This means that they spend time in fight or flight response when they may not be in imminent danger.

Now let me tell you what all this means for me. I have both general and social anxiety. Yup, most people would interpret me to be an extrovert and I still struggle with social anxiety. Talk about a fun anomaly.

With general anxiety, there are times when I can’t let things go because my brain thinks there is some inevitable danger that is coming my way. I will literally tell myself to stop thinking about things over and over, but it doesn’t help. I often must find something to focus on, like music, or a book, or some meaningless Netflix show to take my mind away from what has me feeling some kind of way. On the worst days, there are anxiety attacks. The adrenaline from fight or flight takes over and I can’t breathe or stop my thinking from going to the worst of places. It is scary. I know that most people are probably thinking that I just need to calm down or recognize that I am not in danger. I agree and I’d love to do that. When things get out of control, I rationally understand that I need to stop and that there is no real danger or threat… but it’s not simple to make it stop.

Social anxiety is not what you think it is. I am not afraid of crowds or being around people. I love being around people most of the time. That’s agoraphobia, which is also a form of anxiety. Social anxiety is more like this constant feeling that I am always being judged in social situations. I replay things in my head constantly and always wonder if I should’ve said something different. I read something that basically said that social anxiety is a lot like conspiracy theorizing about yourself. Nothing has resonated like that did. Essentially, I am always wondering if I am likable or if I just think I am, and others are just pretending to like me. Even typing that makes me cringe internally because it sounds so dumb, but it is true. I will reread text message conversations every single day wondering if anything I said could be misconstrued or taken the wrong way. When someone I know looks at me weird or is having an off day in my presence, I replay the last things I said to them wondering if I might’ve said something to upset them.

All of this is not ideal, but it doesn’t stop me from living a normal life. I must manage it and find outlets… like writing overly honest blogs about mental health. I must avoid certain situations when I am feeling off. There are times, when after a couple days that are particularly full of social interaction, I need time to recuperate. During those times, I might ignore my phone or even turn it off so I can just focus on relaxing. Unfortunately, there are times when I must avoid certain people to protect my own mental health. Some days all I can do is focus on the tasks in front of me. There will also be days where I will prioritize a workout over some other social outing because working out helps keep me calm.

I have been kicking around writing this for days. I have started, stopped, and restarted writing repeatedly. I had an epiphany of sorts over the weekend. I am not the only one that is on the struggle bus with mental health right now. I’d even argue that some who have never struggled with mental health are feeling overly anxious or stressed with all the uncertainty in the world. Please know that if you are struggling, you are not alone. I am always here to talk or distract you when you need it. Even those of us who look put together and play the part of a functioning adult well are dealing with mental health issues. It is okay to admit that some days are difficult, and often some weeks or even months are difficult. If nothing else is gained from this, please know that none of us must suffer alone.

Life… or Something Like It?

I have been wearing a heart monitor for about 46.5 hours… I have to make it to 48. I haven’t been able to shower since I have had it on, and for some reason these last few hours have been torture. I decided it might be time to share an update with all of you. Quite frankly, I need to kill some time and try to stay sane until I can enjoy a hot shower.

I made a social media post a couple days ago about doctor’s appointments and tests and rare disease. Many of you know that I have been dealing with a rare disease called Fabry’s Disease. I was diagnosed officially in 2013, but I was born with it. My grandmother, great aunt, cousin, uncle, mom, and brother also were diagnosed with this disease. I know I have written about it in my blog before and posted several times on Instagram and Facebook. I try to be an open book about it for a couple of reasons. For me, it is easier to deal with things if I am not hiding them. Some of how I cope is by being honest with others and with myself. This is real and it’s a forever thing. I can barely keep a secret for a week, so there’s no point in trying here. I also feel like the best way to be there for others is to share my story and, in turn, hope that they are more comfortable sharing theirs. I know that not everyone is comfortable being public about these types of things, and that is okay. We all cope differently.

I am going to give a brief overview on the disease itself, and then I will share some of my thoughts and things I am dealing with right now.

Fabry’s Disease is a rare, progressive, X chromosome linked genetic disorder. It is classified as a lysosomal storage disorder. Since it is X chromosome linked, it can only be passed down when a parent passes an X chromosome. To keep it simple, females are born with an X from both parents, and males only get an X chromosome from their mother. My brother and I both had a 50% chance of inheriting this from our mom, and we both did. Men can only pass it on to daughters. I won’t dig any deeper into that because genetics are hard to explain. The genetic mutation causes people with the disease to produce less or zero of an important enzyme. Enzymes break down all kinds of wastes in our bodies so that they can be excreted. In the case of my lacking enzyme, there are certain lipids (fats) that my body doesn’t readily break down. They build up in places like the kidneys, the heart, and the brain. There isn’t anything I can do from a dietary standpoint to fix this. The result is that Fabry’s patients are at increased risk for stroke, severe kidney disease, and heart disease. There are lots of other symptoms such as neurologic pain, inability to sweat, and weird spots that can be seen on the corneas, among other things. So, there’s the overview. If you have more specific questions, I’d love to explain more… but it gets deep fast.

Now, onto an update surrounding me and some of what has been going on. There has been a treatment available for Fabry’s for some time now. It comes in the form of an I.V. infusion every other week that is time consuming, especially to start. I had opted out of doing infusions for a number of reasons. First and foremost, my doctors had said they were okay with me waiting because I am not showing signs of damage yet. The infusions did present an intrusion on my life that I wasn’t quite ready for. I know it sounds selfish, but it was my reality. I had also been following a new treatment option in the form of a pill that was being studied and had hoped it would get approval prior to any signs of damage to my organs. Long story short, the pill is now approved and I should be able to treat my disease with it (only 30-50% of patients have a genetic defect that is amenable to this treatment option). It is not a cheap option, but none of the treatments for this disease are anything other than extraordinarily expensive.

I must see a nephrologist, neurologist, and cardiologist twice a year in Billings, MT. For those of you unfamiliar with Montana, that’s over 200 miles from home for me. I must have tests… a lot of tests… to check on my heart, lungs, brain, kidneys, eyes, and ears. The result is a very long couple of days. I did that this week. Combined with wrapping my head around getting treatment, figuring out the assistance necessary to afford treatment, and the drive time, all those tests exhaust me. I usually need a day or two just to process and this time was even worse. The heart monitor and the lack of showering that came with it are part of the tests. 🙂

On top of all that, the cardiologist noticed a slightly abnormal heart rhythm on my EKG. It is completely unrelated to the genetic stuff, but I also have a cardiac disorder called Wolff-Parkinson-White that has also likely been there since birth. In simple terms, we all have an internal electrical system that keeps our heart beating. There is a bundle called the AV node that oversees that electrical system. It is basically the heart’s natural pacemaker. Well, I have a second node. Basically, my heart’s electrical system has a short. For now, I don’t have to do anything for it as my heart rhythm is regular almost all the time. In the future, I may need to have a procedure done to correct it.

Many of you also know that my Uncle Duane passed away in early March. I think that is maybe my biggest driver in treating my Fabry’s Disease. I loved him dearly, and I miss him very much. 5 years ago, he had a massive stroke. Unfortunately, he had declined Fabry’s testing up till that point but tested positive after the stroke occurred. He was 51 when he had the stroke and he was 56 when he passed away. His 57th birthday would’ve been at the end of this month. He passed away as the result of a fall and a brain bleed. However, all that goes back to the major stroke as well as several others he had as a result of the Fabry’s. Here’s the truth… I was asked to write his obituary and it occurred to me that my brother and I have a real chance at starting treatment before the symptoms ever rear their ugly head. Unfortunately, there are others in my family living with heart and kidney disease as a result of all this. My heart is still recovering from the loss of my uncle, but it gave me the gift of seeing my longevity and mortality as something of importance.

I have a real shot at living a very normal life with treatment. There are places on this planet that I want the opportunity to visit. There are mountains I haven’t climbed. There are laughs with friends and family that I haven’t had yet. There are hugs and kisses and moments with my husband that I haven’t had yet. Every single day that we get to enjoy the beauty of this world and share time with those we love is a gift. We get one chance to cherish the gift of life and I am going to try to make that last if I can.

On another note, I have nearly made it to the end of 48 hours and will soon be able to shower and go spend an evening having backyard drinks and enjoying some of the laughs I haven’t experienced yet with my dearest friends. Please do not hesitate to reach out to me privately if you want to know more about any of this. I am an open book and I’d love to talk to you.

A Quarantine Survival Guide

I think that no matter what you think of the current state of affairs, most of us have hit a state of troubled in the last few days. It is weird right now, guys… really weird. Most of us are trying to navigate circumstances that we’ve never seen before, and every day is a new adventure of changes. People are working from home while trying to ensure their kids are on task with school work from home. It is a lot to digest and it came on so quickly. I can honestly say my head is spinning, and I suspect most people are feeling this way right now.
With all of this, we have seen a lot of negativity in the last several days. It is somewhat a natural reaction to unprecedented change and hard times. I have gone from a state of untroubled, to troubled, to anxious, to angry, and on and on. Yesterday brought about a shift in thinking for me. I came to a spot where I started thinking heavily about what I can do to get through this, and how can I help others get through this. Today I am going to tell you my list of important things I am going to be armed with to get through this. It is not what you’d expect. I am not going to stockpile toilet paper and bathe in Lysol.

First and foremost, for me, now is a time to be kind and compassionate. EVERY SINGLE PERSON WE ENCOUNTER IS DEALING WITH A LOT RIGHT NOW. For the people in the back, that was EVERY SINGLE PERSON… right now is a time where I don’t think you can be too kind. Thank anyone who does something that makes your life easier. Thank the person who is working in the grocery store, because if they don’t go to work, the store might not be open, and we might not get food. Thank our firemen and police officers who are out ensuring public safety during a time when they are feeling as uncertain as we are. Thank healthcare workers and pharmacists for being on the front lines of this. Thank anyone who goes out of their way to make your life easier or better. Anyone who takes the time right now to check in on you is an angel, because they care about your needs and not just their own during tough times.
I am going to be self-aware and give myself a break. During times like this, I think it is okay to feel whatever you’re feeling. It is okay to be sad, anxious, scared, angry, hopeful, or any other emotion that you might be feeling. If you’re anything like me, you’ve felt all of these things to some degree every day in waves. Right now is not a time to get frustrated with ourselves for feeling all the feels. There is no wrong way to feel. There isn’t an instruction manual on how to handle this situation. It is okay, no matter what. Not only am I going to allow myself to feel whatever I am feeling, but I am willing to lend an ear to anyone who wants to talk, no matter where they are emotionally in the moment.
I am an empath and it can be challenging at times, but I am going to be empathetic right now. I am going to try to put myself in the shoes of others to understand them and what they are feeling better. When someone at the grocery store seems grumpy, instead of being upset, I will remind myself that they are dealing with a lot and are potentially being exposed to illness just by showing up to work every day. When someone seems panicked, I will seek to understand from their point of view.
I am going to find a way to connect more with people from a distance. For years, we have been using our technology to disconnect. We have all failed to be present at certain times. Right now, we have an opportunity to use our technology to actually connect with other people. We are so fortunate that we can practice social distancing and still stay connected. You can bet that things like FaceTime are going to be a bigger part of my life. If you need me this weekend, I will be drinking wine over a video chat with my friends. I am going to send pictures and videos of my quarantine adventures and I hope others will send them to me. I would absolutely love to see what you and your family are doing through all of this.
I am going to keep my sense of humor. I have been through some shit in my life and I have never managed to stop laughing. I will be damned if this situation is going to take away my humor. I will continue to send and post silly memes and try to laugh though this. I will try to be a source of laughs for my people.
So, to recap, my quarantine must haves are:
1. Kindness and compassion for others.
2. Self-awareness
3. Empathy
4. Connection
5. Humor
I truly believe that how we, as humans, handle this, matters. We need to take care of ourselves and each other. We cannot control what is happening, unfortunately. We can control how we react to it and that is what matters most. Let’s look out for each other. Let’s check in on each other. Let’s get through this and hopefully establish a new normal in the future. Enjoy your downtime for now, practice social distancing, wash your hands, and follow the CDC recommendations.  I’ve got your six and I hope you have mine too.