Random Thought Ramble on Negativity

First things first; hello! I've been gone awhile, and I don't think anyone really reads this which is totally fine! This is more so a venting space for me and it helps me get out my feelings in regards to POTS. If anyone reads this and relates to what I'm saying; awesome! It's nice to know when someone's feeling the way you do. I've been gone awhile, however, and am planning on doing an overhaul of this blog soon enough. I have some ideas of things I'd like to do but I'm currently dealing with a lot in my life right now.

This post is going to be a bit different. I might have talked about this before but I really just want to get something off of my chest that's been bothering me recently.

I've joined A LOT of support groups in hopes of finding those who can relate to what I'm going through and I've finally found one that fits my wants and needs. It's so positive and I'd love to recommend it if anyone does read this and wants to know what it is (it's on Facebook). The others I've been through, on the other hand...

Well, to be blatantly honest, and I mean no disrespect, they're riddled with negativity!

Having been in a self-perpetuating spiral of darkness a few times myself, I really wanted an environment where I could feel GOOD about where I'm at. I just keep seeing so much negativity on various groups all over the internet (Facebook, Dysautonomia support websites, and even Tumblr sometimes).

What really stands out to me the most is how many people say "I will never be able to do this".

This kind of mindset is really depressing and it just hurts my heart to know that some people feel this way. I'm by no means saying that my situation is any more important or special than anyone else's nor am I saying that my situation is how everyone else's is too.

I totally get that things can get tough because I've been there myself.

It's just this self-defeating mindset that really troubles me. I'm sure many have seen the miracles that others have gone through, most prominently featured are the stories of those who are told they will never walk again -- but they do!

Dysautonomia and other chronic illnesses alike are really crappy, I agree, but saying that we can't do things because of our illness just depresses me. My parents used to tell me all the time that you'll never be able to do something if you give up before you even try. I used to get defensive and I never believed them... Until now.

I threw away this thought process of "I can't" to "I can; but how?". I problem solve, and I know a few others who try to do this too. It's about finding the positivity in your life and how to combat these problems rather than simmering in the depression that can come along with this. Yes, your life might change, but does that mean you should act like it's over?

We're all amazing individuals and while we might not be able to do something the same way we used to we can easily find ways to get around it. If you love something enough, then you can find a way to make it work. We're strong, we're beautiful, and we may get knocked down quite a few times before we're given the opportunity to get back up again - but the concept is that you try, try, try again until you succeed. Change and progress doesn't happen overnight; it takes hard work and effort.

I'll continue to have faith for myself and everyone else, that these illnesses will NOT beat us. They do NOT define who we are and I will continue to live my life in a way that I see fit regardless of what my illness might have to say about it.

I don't mean any disrespect by this post, of course, especially because I do understand depression and feeling defeated as I deal with all these feelings myself. I just really want others to see that you CAN do anything. I've achieved quite a few of my goals and am on my way to achieving my dreams.

As Shia LaBeouf is well known for saying now... "Don't let your dreams be dreams; Just do it."

Thank you and I love you all. You're going to make it through this. <3

Love and hugs,

Rosie

Dear Rosie's Body - An Open Letter Regarding My feelings About You

Dear Body,

We've known each other for a very long time... 21 years, actually. I think this is the longest relationship I've ever had, where I've been this close to someone. We have had so much fun together and have spent a lot of time getting to know how the other works over years. We've been through a lot of rough times too, but you were always there to support me through them and bounce back like nothing happened. As you know, something drastic changed about one and a half years ago now that has really caused me a lot of trouble.

You decided you wanted to get sick.

Now, I don't know what possessed you to do so nor do I know why other bodies decide to fall ill but I wanted to tell you that I was really mad at you because you did. I spent a long time grieving our past relationship and all the fun we would have together. Like going hiking all the time or bowling with friends! Those will be memories we'll always have to cherish and memories that I mourned. I was angry that we couldn't dance anymore, that we could no longer go for walks because we enjoyed them and that we can no longer eat our favorite foods together.

Even as I'm writing this I can feel my eyes welling with tears because I know that our relationship has suffered a big blow and that we won't be able to share in the same experiences we once did. Our relationship will never be the same as it used to be. Everything has changed between us and it's been hard for me to accept it. I'm still struggling to embrace this concept, so I can learn to start taking proper care of you again because I hate to see you suffering just as I am. I'm too stubborn to take care of you, because I never wanted to admit that something was wrong in the first place.

But that's not why I'm writing to you. I don't want to dwell on what used to be because that's in the past. I wanted to write and tell you that I forgive you.

I forgive you for getting sick and now I need to work on forgiving myself for hating you for such a big betrayal. I realized it may not be your fault, and that something else might have happened to make you this way. I don't think we'll ever really know what caused you to change so much but I do know that I still love you just as I did before and no matter what we go through together that will never change. I want us to embrace these new differences and learn how to work together, to accept our new-found limitations and find ways to counter them so your illnesses don't control how we work together as a team. I want us to continue reaching for our goals even though we will encounter quite a few rough patches. I want us to overcome these illnesses together and find ways to come out even stronger.

I have started to learn that what has happened to you is out of my control and that it's not right for me to hate you because you're not the same as you used to be. I have to love you as you are and embrace the new relationship we will continue to forge. I'm starting to see our struggles as life lessons and while there will still be a lot of days where I'm going to cry and scream at you for not working the way I think you should; I can at least begin my process of healing so I can help you heal too.

We're both in this together and I'm sorry that I didn't start to realize it until now. We'll come out on top; we always do.

I love you and I promise we'll get through our hardships hand in hand. Things will get better the more we work together. I swear it!

Thank you for still being there for me.

Love,

Rosie

Drowning in the Dark Abyss that is my Mind Pt. 2 - Trigger Warning

If what happened with my dad and the earlier stressors that week weren't enough to push me over the edge; what happened Sunday night was enough to do so. I enjoy roleplaying online, roleplaying as in creative writing with a partner. It is an incredibly therapeutic thing for me and regular writing just doesn't do the trick. I need that back and forth so I feel like I'm not alone; like I'm doing something fun with someone else and don't know what's going to happen next in a way that I'm included with the plotline instead of simply following along.

I have a very good friend that I would do this with and while we were only RPing for a few months it felt like longer because we clicked really well. Through out our time roleplaying together they had promised they'd never abandon me and never drop our roleplays. I told them not to promise that because it always seems to happen (I've lost quite a few RPs within the past few weeks which was disheartening but not as much so as this). Sunday night they log on and tell me they've got some bad news. They won't have internet anymore and don't know when they'll get it back.

Now, I know this isn't their fault but when you're stressed and depressed your brain feels like it's revved up on sugar and begins to obsess while ideas of why this is happening begins to bounce off the walls of your mind.

I lost it. That's really the best way to put it. I've been through so much this past year that this was apparently the final straw. I broke down, hyperventilating and blubbering like a whale because my brain just couldn't take another break like this. I cried and cried and cried. I kept asking myself why? Why did I deserve all of this? What have I EVER done that warranted being punished so much? It's not enough that I'm still in mourning about losing my previous self to chronic illness, almost got in trouble with my job, suffer at home with a roommate that is really mean to me, and have a dad that gets angry with me so quickly. No, no. Now I had to lose one of the only reliable friends I have online who offered me many hours of enjoyment and distraction from the swirling vortex of a mess that is my life.

I couldn't and still can't comprehend why this is happening to me. I don't think I ever will or if there's even an answer. They say that you're only given what you can handle and I have to say I must be viewed very powerful in the eyes of the higher powers if this is what they keep throwing my way.

I've never realized just how terrible depression can actually be when you deal with it on a continuous basis. I've been stuck in limb the past week: My brain and my body can't make up its mind about whether I want to cry and be sad or just... Numb. I've been going through the motions all the while feeling like I'm stuck on this gigantic bean bag that's putting weight on every ounce of my body. I can feel the pressure of my sadness all over me. Then there's the crying over the little things and then crying for no reason. It's like I'm an emotional drunk but instead of liquor I'm intoxicated with my despair and feeling of hopelessness.

I'm watching the world go by and even though it's been gorgeous outside I just feel like I can see this haze floating around my eyes. My mind knows it's beautiful but I'm just not seeing it in that way.

Mental illness is just so hard to explain to someone else and I'm trying not to talk to anyone about it as I hate putting my problems onto other people. I have to wait and share this with my therapist because she won't be back for another two weeks.

I'm used to putting on a brave face, though. It's what I do on a daily basis. I just wish that I didn't have to pretend to be happy anymore. I want to find something that brings me genuine joy but I've yet to find it. For now; I've taken up the art of calligraphy in hopes of finding a hobby I can immerse myself in and occupy my time with.

I can now sympathize with the Whos of Whoville - I feel like I'm simply a dust speck floating around the air, wondering how and why I'm feeling the way that I do as well as when it's going to get better. Maybe I'll go listen to that song now... The Seussical is such an awesome musical but I digress.

This was more so a venting session for me to get some stuff off my chest and nothing really meant to be enjoyed by others.

Here's to hoping happiness arrives soon~

xoxo

- Rosie

Drowning in the Dark Abyss that is My Mind Pt. 1 - Trigger Warning

I didn't really want to talk about this but I'm feeling like I should because it might be therapeutic for me. It's not something that anyone really wants to read about or to think about but if someone does decide to take a peek at this then I hope it's an enlightening experience. I'm going to be splitting it up to make it easier to read.

I suffer from depression/Bipolar - At least, that's what we think. I'm one of those lucky ducks that doesn't fit into a specific category. So for simplicity's sake we'll just say I can get incredibly moody sometimes though I've got a pretty great control of it compared to my years as a child.

Anytime I suffer a depressive episode it's never anything too huge and I pretty much bounce back shortly after it starts.

Well, this time's a bit different. It started on Saturday the 25th and it hasn't stopped. I don't think I can remember a time when I've been subsequently depressed over the course of a few days. To be honest; I'm not even sure if I've ever experienced a prolonged episode of mopiness.

It was triggered earlier in the week but I kept my head high as I was actually feeling pretty good despite the stressors I had experienced. First of all I was told I couldn't get funding from DVR (Department for Vocational Rehabilitation) because my parents make too much. I'd been told before that they could pay for part of my tuition with school and we'd been holding out hope for it. I was kind of expecting that so it wasn't too big of a deal. Pretty stress inducing because I knew I wouldn't get free money but still nothing I couldn't handle.

Then I found out a roommate who has been nothing but cruel to me and the reason I almost flunked out of college my first semester at this school (they made me incredibly uncomfortable in my own house and I was so anxious anytime I left my room) was actually going to be staying in the house and not getting evicted like we'd been told originally. Still -- I was proud of myself because I held my head high and knew this would have usually sent me spiraling down into the pit of despair.

It wasn't until Saturday when I went home for the weekend that things got out of hand. As I've mentioned before, my father is... Not always the nicest person and I have a lot of problems with my self esteem and mood because of him. As I've mentioned prior to this for anyone who has read, he does not like spending money on medical needs.

We ended up getting me an MRI earlier this summer to ensure my headaches weren't anything serious and we got the bill that day. His mood immediately went from happy and carefree to "I'm the God-Damned Big, Bad Wolf and I'm going to blow your mother fucking house down" in a matter of seconds. Immediately he began to indirectly ram into me and I knew it was directed towards me even if he didn't say it. It was clear in his tone and how he carried himself.

"How are we even going to pay for this now? No pedicures today. (Mom interjected to say she had the whole day planned out and it wasn't a problem.) NO, we aren't going. We don't have the money for fun spending anymore. We're done and we've only got $1,000 dollars in the savings account so after that we're fucked."

I don't remember too much because I honestly think my mind went elsewhere in that moment and I ran upstairs to the bathroom so I could get ready to go on the errands we were running but also to cry in private. It wasn't until later that I found out my mom had tried to get my dad to apologize and he said no.

Of course I didn't handle this well. The man has always told me that I'm selfish, never going to amount to anything and once was so bold to tell me "I didn't think you'd ever have a job" because he thought that was the right way to tell me he was proud of me. I tried my best to stay okay after this but it was too hard. I was too far gone by that point and what happened next didn't help matters at all.

To Be Continued in Next Post

~ Rosie

Finally; A Light at the End of the Tunnel!

Oh my gosh. So I've been waiting a very long time to be able to write about this and I can't believe that the day has finally arrived. I think we're making progress into my treatment plan for my POTS! It was very touch and go since I was diagnosed in April of 2014 but now that seems like it may very well become nothing more than a typo in the dramatic saga that is my life.

So where do I even begin? This is going to be long and a lot of me babbling so if you want to take part in the Too Long; Didn't Read competition you may skip down to the bolded paragraph at the bottom.

Well, first I saw my psychiatrist and was diagnosed with Binge Eating Disorder. You'd think you would be unhappy to receive a diagnosis of an Eating Disorder but I couldn't be happier. It feels like such a relief to know that what you're experiencing is real and that there's a way to treat it. That treatment in my case is the stimulant known as Vyvanse.

Now, I was very hesitant to try this beautifully miraculous drug because my psychiatrist (well versed in POTS himself, as he's the one who suggested the diagnosis to me!) mentioned that a side effect is tachycardia. No POTSy wants to hear that, of course, but I decided to try it out. The idea is that this medication will suppress your appetite to help combat the binges while you're in therapy working through the psychological tethers helping to cause this disorder.

So I took it. I was terrified and nervous because I worried it would make my POTS even worse.

Well, it worked beautifully. My appetite was gone and I was finally able to be free of binging for the first week in about five or so years plus there was no racing heartbeat! Unfortunately this didn't last but we've now got me on a lower dose and so far it's beautiful!

This diagnosis, however, brought upon a beautifully wonderful epiphany that I just have to share with the world because I think it can genuinely help others.

POTS is irritated by eating large meals. This is because your body has to work harder to help digest the food and as a result your heart starts pumping harder to assist in this mission. With POTS, it can cause a lot of icky feelings such as the all-too-fun fluttering in the chest that feels like you're going to become one of those cartoons whose heart bursts through their chest like a cuckoo clock.

Thinking about this, I realized... "Big meals... Binging... Big meals... I've been really sick... Binging... Binging... OH MY GOODNESS".

It hit me like a ton of bricks.... My POTS was so bad because I was suffering from Binge Eating. I ate so much food that it would make my heart go crazy and I felt like a miserable mess.

With this medication I don't experience as many symptoms anymore. I'm actually getting better.

I'm getting carried away again with this post, as I usually do with the others. I'll cut straight to the moral of the story right now:

If you feel like you suffer from compulsive eating, over eating, not eating enough, or anything that doesn't seem right regarding your food intake - Please seek help. Treatment can and does work but it may also help treat other problems you are dealing with. If you are also sufferer of POTS and you're experiencing these other symptoms; I strongly implore you to speak to your medical team because treating that may help treat your POTS too. I know it's scary to talk to someone about this and sometimes it can feel embarrassing too. Trust me, I really do understand. I am dealing with a lot of anxiety right now because my hunger is suppressed which means I don't know how to eat like a regular human being. It terrifies me that I don't have a basic skill that most people do. I know, however, that I have a very strong support system both in real life and on the interwebz who will help me through this. Things are changing for the better and YOU CAN GET BETTER TOO. Sometimes it takes awhile to find the right path and may seem like you're walking blindly in the dark - I was there recently too - but there is ALWAYS a silver lining. Even though I don't know you I genuinely care about you and your well-being. I support you and I know that you're strong enough to handle whatever comes your way. 

 I know this is pretty senseless babbling about my personal life and experiences, as are the rest of these blog posts but the reason for this is because I really want others to know that they are not alone. I share my personal experiences, my struggles and my successes because I don't have anyone who knows what I'm going through. While this acts as a journal/diary of sorts for me, if someone else does read it my hope is that they'll find solace with the fact that someone else is struggling or is happy in the same way they are. I want to help with the amazing sense of unity that is found in the Spoonie Community. It may not be the most exceptional way to do so but I feel like it could help at least one person.

Thank you for taking the time to read this and I wish you all the best~

Happy planting, POTSies (Oh, I love bad puns too much),

xoxo ~ Rosie

It's Just So Frustrating

Hey guys. I guess I'm not going to be reliable with trying to post weekly. Maybe now that it's the summer I can find the time to do it, but I won't make any promises. I just had to write something right now because I needed to get it off my chest.

I keep pushing myself too hard with my POTS but I can't help it. I don't have the financial support I need to be able to relax and not do anything on the days I need to. I took tomorrow off of work because I have to go back home for a bit but also because I've spread myself way, way, way too thin. I think I used up the spoons I had for this entire week by Monday evening and today's only Wednesday.

All I did was go back to work for a few hours and start volunteering at a nursing home that I had to walk to. All things that would make someone tired, yes, but not to the extent it does for someone with POTS. It doesn't help that, and TMI here, it's that time of the month. I'm sure any woman with POTS can relate to how nasty symptoms can get when you're dealing with your natural cycle.

I'm just so frustrated because I need to be able to afford living on my own, but I don't have the capability of working as much as I need to. No one really understands just how hard this is, but my DVR counselor (someone who is from the state and working with me to help me become employable with a disability) gave me something that should help start an open communication with my doctor about my conditions and limitations.

I've never been the type to listen when someone tells me to take it easy. I just get this undeniable need to keep going and going and going.

I think I might have learned my lesson fully tonight because I spent yesterday working and going home with my mom to pick up the car then came home to do laundry all night before sleeping. Had to wake up at 9:20 am which for me with POTS, is the equivalent of waking up at five in the morning in terms of how I feel. Then I was out and about doing a lot of running around until 4 PM tonight. I also had to get my blood drawn and forgot to eat which only made it worse. Came home for a small break and then went off to volunteer for a few hours.

I know it sounds like the typical day for someone but this just drains me. As I'm typing this my eyes are blurry and unfocused, my head is pounding and my neck is aching. I feel nauseous and exhausted so I'm going to be heading to bed.

I'm just mad at myself for not listening to my body and giving it the rest that it needs. I'm frustrated with my support system (who is AMAZING. Don't get me wrong! Mom and dad just bought me an entirely new bed!) for not understanding something that they couldn't possibly know unless they experienced it themselves.

I may have found a doctor, though, who knows about POTS and can help me. We'll see, though!

In happier news: Despite all of my problems and struggles I had this semester.... I passed all of my classes with B's!!!! I'd say that's a pretty great accomplishment, all things considered. I'm going to be working on myself this summer (and losing weight hopefully, because of doctor's orders) so here's to the start of a hopefully wonderful summer break!

To everyone, good night and farewell until next time~ Hang in there!

- Rosie xoxo

Wait, I can do what...?!

Hello, all!

This is just going to be a short little spiel about how much I'm enjoying my new work out routine! Granted, it's only the first day but as I'm sure many of you know, when you suffer from chronic illness and have a hard time finding a work out routine you can tolerate, you get excited when you find one!

That's what happened to me today. I remembered my school offers some kind of fitness class called Yogi or something like that... I thought it had something to do with the bear but when I looked into it, I realized it was actually a combination of Pilates and Yoga! Well, I already do yoga and I fair pretty well with that despite my POTS but I've never tried Pilates. As it turns out... It works really well for me!

I was really surprised because a lot of it requires bending over and reaching up above your head which yeah, usually makes me feel miserable but I always keep careful watch of my pulse and my symptoms while I exercise to ensure nothing negative comes out of it.

I wasn't able to do the full video I had found, but I paced myself through it slower than you usually would go through it and I can already feel it working in my body!

So, I've decided to try this four week beginner's work out to get started in Pilates and I may change it up a bit to fit my chronic illness more... But I've found it's low key enough that if you do struggle too much with your POTS symptoms, you can do all the floor exercises without too much trouble.

I want to stress, however, that EVERYONE IS DIFFERENT WITH THEIR SYMPTOMS AND WHAT THEY CAN SAFELY DO. 

Please, please, please do not try this if your symptoms are made a lot worse by reaching and bending. POTS symptoms can vary in severity and I'm very lucky that while my symptoms are difficult to deal with, they're not bad enough to keep me entirely confined to not being active.

I firmly believe, however, that this illness does not own me - I OWN IT! I'm going to take my body back and I will see a day when these symptoms no longer plague me. They've said that exercising will help and it has helped me in the past... So maybe a combination of being fit, eating healthy, drinking lots of water and staying on my salt tablets will be what achieves less-severe symptoms for me.

I highly recommend trying yoga if you're unable to do Pilates or even a mixture of the two because it's less intense than Pilates alone. Always consult a medical professional before starting any new work out routine, however! I'll be following Blogilates' Beginner's 2.0 and seeing how that goes. I highly recommend checking her out! You'll find links below to find what I'm using and you can see if it works for you~ Blogilates also has some great tips for getting fit and healthy too, so it's not just about exercising.

I hope everyone is well and that you're enjoying this new spring weather if you're in an area that gets snow. I know I am! I'm hoping to spend a lot of my time outside as soon as the weather permits.

Best wishes,

Rosie

Here are some of the videos I've found, in case you'd like to look at them. All credit, of course, goes to their creators. :)

Blogilates - Beginner's 2.0 Workout

Blogilates Youtube Channel

Pilates/Yoga Combo

Emerging from the Darkest Depths of the Abyss

Hello, guys!

I've been gone for awhile. Yeah, I know. I'm sure you've all missed me tons and bunches which is totally cool. -insert sarcasm here- Haha. I kid.

I don't even remember what I was planning on doing with this blog nor do I remember what I was doing with my actual Tumblr blog. A lot of things happened and a lot of personal growth and discovery occurred as well.

I needed some much needed time away from dedicating my time to something like this and now I'm here, full swing again (or I'll try to be).

So! Some updates here....

I may be repeating some things, but here it goes:

I am STILL in college. Woo! Last semester was super, super freaking terrible. It wasn't because I didn't do a good job, it's because my disability services that were supposed to be there for support were not. Long story short, they totally screwed me over and I just had a meeting with the Vice Chancellor of the school to rectify this situation. Let me tell you... Having POTS and anxiety together with a situation THIS big is freaking terrifying. I felt like I was going to pass out but I did it and that's what matters.

Staying on this subject slightly, I've made the realization that people are not going to understand POTS sometimes and sometimes those people are the ones who are supposed to be the support in your life. When you suffer from invisible illness (and those of you reading this who do can probably sympathize), you have a lot of people who don't take you seriously. I've read about it but only just recently started to experience it.

However, I'm a stubborn b**** when I want to be and I will not back down without a fight. Hard work and dedication is what counts here!

But I digress....

I'm on academic probation currently because of this situation and I'm incredibly angry. It's resulted in a whirlwind of depression and low self respect because I didn't think I was good enough even though I'm an A and B student and this wasn't even my fault.

I had said before that I wouldn't let myself get as low as I was and I'm not ashamed to admit that it did happen again. I've realized that we all have our moments of weakness and it's the way we handle them that makes us strong. I'm slowly getting there with feeling better about myself and I am happy to say I have an amazing support system with my family.

As for my living situation -- I still live on my own and it's amazing! We're making small steps to help me get more self sufficient. It seems like it may take awhile but I'm glad it's happening at all because I felt I wouldn't get there for awhile a few months back.

My roommate situation is not great, however. I'm not sure if I mentioned but fate really threw me a wrench with my first living situation. Dealing with a harassing roommate that resulted in my needing to talk with law enforcement twice was definitely not how I pictured my first true year of college.

But if we forget all of this and see past it... I am doing AMAZINGLY. 

I am really happy and I'm making strides towards graduating. I met with my advisor and we've determined I should be holding my diploma in my hand by the Spring of 2018. Yeah, I'm behind schedule but who cares? At least I'm HERE. I didn't think I would be when I first got diagnosed with POTS and Celiac Disease. I thought I'd continue to fail but I'm happy to say I should be off Academic Probation and that I should pass all my classes with at least a B.

I also turned 21 and that feels amazing as all heck. I'm running a student organization too, that I raised up from the ground last semester and I'm beyond pleased to say that we've got at least 13 steady members who continuously show up to meetings and we're growing even more. I'm doing so well and I couldn't be more pleased.

Sure, this may sound like bragging but it's not... I wanted to share all of this because I wanted to reach out to those of you who are suffering so that I can say:

IT GETS BETTER!!! *throws confetti* You WILL see a day that you feel better. Sometimes, it takes patience. It was a hard lesson for me to learn but now that I've seen how easily things can fall into place, I know that I just have to try to take things one step at a time. 

You are strong, you are beautiful, you are an incredible human being and you WILL make it through this and that is what I've decided to do with my Tumblr and POTS blog. I will be here every step of the way, sharing my experiences so that you know you are not alone. I am here for you.

Thank you and I hope you all are well. It's great to be back! 

xoxo

~ Rosie