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

Where I've been - Update

Okay, so... This is probably not going to be a super fun post. Fair warning, but I do owe an explanation to my vanishing. I don't think I ever published on here, but I think the only people who actually look at this are my Tumblr followers.

First things first, I moved out! I thought it'd be amazing, to have all this freedom... And don't get me wrong, it really is, but I think this has just added to my depression given how creepy my roommate is. He won't talk to me about himself, I was told an age that he was but it turns out he's A LOT older and he avoids speaking about himself. I don't know his real name or anything about him, other than his major and some little things that don't mean anything. So, I've been staying at home with my parents again this week, after only moving out last weekend.

So that's why I've been really busy, having to get everything together with this and making sure all my school stuff is in order.

I also got promoted to being a moderator on a forum that I absolutely love so I've been busy with that too.

However... This isn't the full truth. The truth is... I let myself get low again. I was struggling with whether or not to share this because in all of my posts I'm always upbeat and positive. I was going to sound like a hypocrite, especially after saying that I wasn't going to let myself get this low again. And in all honesty, this isn't as low as the first time I let myself get down.

But I thought about it, and realized... I have mental illness. I suffer from depression, it's normal to get low. You can do everything within your power to try and stay happy, stay above the dark waters but sometimes it just doesn't help and that's why it's called an illness.

I realized that I wasn't happy with how things are going, and while I'm happier with them now, I'm still depressed because I realized I don't have anyone here that I can really count on. I have my family, yes, but even just being back home this week I've been getting upset again because my dad doesn't treat me with respect. I don't feel like my new house is actually home yet, and I know that will take awhile but it's not helping matters.

It also doesn't help that I have no car and my job doesn't start until September so I have no money to be able to go out and do anything. My house has internet, but that is honestly the ONLY thing that I have there. I have my new parrot, who I just adopted after my beloved best friend (my cockatiel) passed away about a month or so ago. He was my therapy and losing him was incredibly devastating. I thought him invincible, like we do any animal family member. I didn't expect him to go so soon, and it really hit me hard.

I also have people I know online, but only one of them has proven to be a genuine friend. Everyone else makes me feel like I'm just there for when they want me or need me, because anytime I need them, it doesn't seem to matter. They just disappear and leave me, without so much as a good bye and that hurts. I already struggle with self confidence and feeling like I'm worth something, to not even receive a 'be back later' when in the middle of a conversation when someone decides to leave, just makes me feel like absolute crap.

But not having anything to do, or to act as a distraction, really lets me be alone with my thoughts which is something I try to avoid constantly because I get into this vicious cycle of down talking myself and making myself think that I'm some horrible person that no one wants anything to do with. I know this isn't true deep down, but at the same time, it honestly feels like it is. I can't keep friends, no matter how hard I try, but I suppose that's where the Asperger's comes in.

Last night, I did some thinking because I was alone again with nothing to do, and I realized some things.

One in particular is my food addiction, and why I keep eating Gluten even though it makes me sick and miserable. I feel alone and I feel like I hate myself, so I keep eating things that I know will make me sick and just eat to fill this empty void I feel. I just want to feel 'full' of something, even if it makes me sick to my stomach because I eat so much.

I also realized, I need to find a hobby that will allow me to be occupied when no one is able to talk to me (which seems like it's a daily occurrence. I thought friends were supposed to want to talk to you?), because otherwise I'm going to end up driving myself insane.

I also want to add, that I'm by no means suicidal nor am I a self-harmer. I don't want anyone to grow concerned, if you're reading this. I've never been the type to get to that point and I'm thankful I never will.

But just because I'm not there, doesn't mean I'm not suffering from depression or feeling really down.

I'm working on trying to build myself up again, my mom told me to take it a day at a time and I'm doing my best to do so. I just wish that I had more people helping me through this, so I wouldn't feel so incredibly alone.

So that's why I've been gone, I'm working on trying to come back and getting my mind into gear but it's been difficult with all of this change.

I hope you can all understand.

Thank you, and I hope you all are well,

Rosie xoxo

Attention: This is a rant!

So, I don't normally do anything like this (rant, that is), but I really need to. My dad was tolerable recently but he's snapped back to his usual, asshole-ish ways. He doesn't understand chronic illness or illness that's invisible, so I'm sure those of you who have this happen often can totally relate to what I'm about to talk about.

So, I'm taking a class that is literally about 45-50 minutes away and it is twice a week. I was doing really well at first, and was really excited (still am) but with all that is going on with our neighbor/family friend in the hospital still and this God-awful heat, I'm just suffering with my POTS more so than usual (our neighbor isn't awake yet, by the way, it's been two weeks. We keep getting good signs, and she smiled at her daughter, but then we go with days of no response. It's been hard for everyone).

Because we were told last week, she might not wake up (now we aren't sure, they just switched to using the term 'if' instead of 'when'), I freaked out. I don't handle this sort of thing well at all, probably a lot worse than the average person due to my anxiety I have. As you can imagine, my POTS symptoms went crazy spastic and I wanted to cry. I talked with my instructor, and she said just to keep her updated and that missing the class last week wouldn't count against me for which I'm thankful. I still need to contact her to let her know I can't be there tonight.

I also have to do my own grocery shopping now, because my parents (while I do appreciate them shopping for me), would always take creative liberty with the things I asked for, getting something else instead that is different than what I asked for because it was 'close enough'. I can't eat certain things due to my health, and they don't do the best job with getting Gluten Free for me either, so I had to take over this. I am also doing volunteer work for an hour in the morning, which takes a lot out of me. Based on the spoon theory, I go through A LOT of spoons in the morning, and today I just went through them all.

The past few days, I've had a HORRIBLE headache. This heat and stress is just piling up, and I even have a huge knot in my neck that needs to be worked out. I feel sick and miserable, and after having to go grocery shopping tonight as well as to other places for my siblings, I just couldn't get myself to drive another 50 minutes to go to a class for a few hours, then drive home. I don't think it'd be safe for me to do so either, as I've passed out driving when I get this bad.

I get home, feeling proud of myself for keeping my groceries within 50 dollars given that I have to eat gluten free, and that I was able to coupon as well. I was elated, but my dad just had to stomp all of that.

I start putting groceries away, obviously in a daze because of my headache and POTS symptoms (I think I'm a little dehydrated too), and I hear him go, "You better hurry if you don't want to be late to your class".

I have explained COUNTLESS of times, to him, that I don't like being told to do things. I understand he means well, but he doesn't act like it. He gets incredibly rude and bossy as well as act like a child when he thinks he's being disrespected. I don't want to be reminded to go to a class when I'm an adult, and know how to handle myself. On top of that, I'd already told them that I probably couldn't go today because I had to get food and my head was really hurting.

So I had to explain again, I'm not going, I'm going back Wednesday because I've done too much today. I feel terrible, to which he replies, "This is the third class you've missed. I didn't pay all that money just so you could skip class".

This makes me want to cry and I somewhat snapped at him, which made him shut up. I said, "I didn't ask to get sick, I didn't ask to get a headache. It's not my choice." I have to wonder how many others end up saying this when they get frustrated with someone? Because it is true. You do get to choose what you do in a day, yes, but you didn't ask for this illness. Who would want it? I had to choose buying food because I had no food in the house for me to eat and no other time to go shopping for it. Food > Class was what I went with. You have to weigh your options when you suffer from chronic illness, and decide what's best for that day. I know now, that driving 50 minutes away for a class is too much for me, and I won't be doing it again even though I really want to take the second class. I know my limits, and I'm still learning them. It's going to be trial and error, but I get too upset over it because my dad doesn't realize how much this takes a toll on me.

He is one to talk, though, because when he gets home from running errands (and he has NO chronic illness), all he wants to do is plop himself down in front of an electronic and ignore all the other plans he'd had made that night (which usually isn't anything, because he doesn't really have a social life). He will tell my mom and the rest of us that he's too tired to do anything for us, and needs to relax. He doesn't do anything around the house except work a job he hates from home, while playing on the computer the entire time. This bothers me immensely. I used to work and go out for that job, I would go to school (and am going back to school this fall), I have a chronic illness that makes it hard for me to do things, and yet, he sits there claiming he's 'too exhausted' to even take the dogs out to use the restroom? He makes us do that, even though he's already right there. He calls us from all the way upstairs, to come down and let them out for him when he's sitting playing his game.

I cannot stand this. I do more around this house than he does, and I try to do it too, even when I have an illness preventing me from doing so. He has no excuse and I don't appreciate how he treats me because of my illness. He tries to say that I have nothing to compare to him, because he works all day, and all I do is sit around the house doing nothing. I have an ILLNESS. I sit around because I can't do much else! Do you think I really want to sit in my room all day? I want to go out with friends! But I have to cancel or leave early at times, because I'll be in too much pain or too tired to continue on with what we're doing. He has nothing to compare to me, because I've also worked shitty and stressful jobs that I hated just as much as he hates this one. He thinks that because he's the older adult and the 'breadwinner' he gets to act like a King and be treated like one.

My mom is at least understanding of my limitations and asks me first if I can do something rather than tell me. I do what I can around the house, when I'm able to, and that's all you can ask of me. I just want him to learn and respect that I do have limitations, and he can't get upset with me for having them.

I suppose that's the end of that rant for today, I don't really like complaining or being mean/rude about other people, but I needed to get this off of my chest.

I hope you all are doing well, and are enjoying the summer weather!

- Rosie

Lots and Lots of Feel Good Feels

So, I'm feeling rather inspirational tonight and I'm in a really happy mood for some reason, so I thought I'd share some of my personal outlooks on life. I USUALLY have these, but just like anyone, I go through down periods of sorrow due to depression.

Before we get into my preaching of positivity, I'd like to take the moment to update you all on our dear friend in the hospital. She seems to be doing A LOT better. Opened her eyes today, but still not awake. They were able to keep her off sedation all day, and the antibiotics are working slowly but surely. It's all we know for now, aside from the fact that her ECG was NORMAL. Which is amazing news given what she has.

But anyways! Let's get on with my happy and sappy post, and hopefully it'll at least provide positive feels for at least one person.

Let's start with how I personally look at life. 

For the longest time, I was negative. I used to be the person who'd be called "Negative Nelly" but in return would counter with, "I'm not negative, I'm just a realist". This is not true. There are still some things that I will think realistically about, and not negatively, but most of the time I'm just happy. It took me a long time, but I finally realized something: Everything REALLY does happen for a reason, and I've been experiencing that first hand. I'd always be told that after dark days, would come a rainbow but I never agreed. I'd been so far down, and just didn't think it was possible. Now, however, I see that as truth. Getting my disability of POTS and all of the other things that happened at that point in time, allowed me to really examine my life and realize the direction I wanted to go with schooling. Not only that, but it got me INTO the college I always wanted to go to.

SERIOUSLY. THINGS HAPPEN FOR A REASON. YOU JUST HAVE TO TRUST THAT EVERYTHING IS GOING TO BE OKAY. REALLY. IT GETS BETTER.

Out of all of this, came my lovely little saying and motto that I personally live by DAILY.

"IF IT HAPPENS, IT HAPPENS AND WAS MEANT TO BE. IF IT DOESN'T, IT DOESN'T AND WASN'T FOR ME."

I've wasted too many hours of my life worrying about what could be and what might not be, and realized that negativity really just takes too much energy. I try to be happy about everything, and I'm trying to help others see this.

Such as waiting in the doctor's office. If they're running behind (and trust me, they will be, they always do), my mom gets really upset and starts grumbling. I keep telling her, "Why? Why grumble? Why feel so upset? It's not going to change anything. It's just how things are. It takes more energy to be upset, than to just not care".

We spend too much time worrying about things that aren't important, and getting upset over doing taxes, or paying bills... The thing is, while it IS stressful, it's a part of life. It's not something you can change, and I think that you should try your best to just be HAPPY with what you have. You can't change how stupid insurance can be sometimes, or the fact that you pay bills. These are really just facts of life, things that you won't ever be able to avoid (unless you go totally nomad and just live off the land, wandering freely without any care in the world, but I know that's not the choice of most. Haha. But there's nothing wrong with any life style.).

I think, and this is my personal opinion, you should just let it go! Understand that these things are there, and won't change (unless by some miracle they do), and just accept it. You'd be much happier, and less stressed.

I still have yet to figure out how to be happy about going to work... But I do my best to find little things that make me smile there, when I had a job. It really got me through the day, and also thinking about what I had too and what this job would bring me.

I think that if the world was a little more positive in the way we thought, that people might actually be HAPPIER.

But that's just my personal opinion, so I'll get off my soap box and stop preaching. Haha.

I hope you all have a good night, and are well~

- Rosie

Hard Times Made Harder

I don't want to spend too much time on this, and I was meaning to get into an actual post on here, but I don't know when I can.

On the bright side, I've started my ASL class and had a wonderful situation yesterday where, before my class started, I was at the mall and encountered a woman. She apologized, thinking she'd bumped into me, but really, she hadn't. I said it was okay, but she didn't seem to hear me and instead did something that looked like a sign. I got excited, thinking, "I can't possibly be meeting with someone who uses sign language so soon!" but I had! It turns out, as the woman told me, she was deaf! And I explained to her I knew very little sign language and I was able to communicate with her. It was amazing! I felt so elated, and the class that followed was wonderful!

Well, I woke up today with full intentions of going to the gym to swim and work out, and get back on track with my health... But fate had something else in mind.

I woke up to my mom telling me that a family friend and neighbor of 11 years was in the hospital after having been found unresponsive. As they have discovered today, she has bacterial meningitis and a brain infection.

I'd always heard horrible things about this illness, but I didn't ever think it'd hit so close to home. She seems to be doing a fraction of a bit better than this morning. She still hasn't woken up at all, but now they have her sedated. It's a waiting game, to see how things go, and I'm hoping she's going to be alright. I know that there will more than likely be some side effects, due to how bad her case is, but I'm sure she can get through it. She's a wonderfully strong woman and super sweet! She's been there for so long, I just want to see her be okay.

I have to get going, though, to get ready for tomorrow's class, so this was just a quick little update.

I hope all of you are well~

- Rosie

Try and Try Again

Well, the past few days have been rather icky. The stress of my current financial situation and the realization that life is going to be completely over hauled next year, really hit me. I broke down the past two days, crying on and off. I don't have too many friends in the real world, and the one who I do have was gone which made things rather hard to deal with. Then, of course, my sisters were being interviewed and photographed for the paper because they're graduating early.

Don't get me wrong! I love them to death and I'm super proud of them, but I can't help that little voice that wonders "when will I get recognition for all I've done? Do I even deserve it?" I try so hard to help others, and don't ever really get a thank you. I don't need one, of course, seeing someone happy and able to move on in life because of something I did is thanks enough, but just once it'd be nice to get a 'good job' or something that shows they really appreciate what I did. Then, of course, I'd love to find someone who I help that would help me in return, when I get low... Because so far, no one in my life does that for me. I'll help them, but they never talk things out with my problems. It's okay, though, because I know not everyone has the ability or patience to help someone struggling with depression. It's a rather scary thing to be involved with, I know first hand.

But I'm past all of this now! 

I feel totally renewed and I'm really starting to work harder on finding some kind of job that will help support me before I move this summer. I NEED a place to live, and I NEED the funds to support it. It's going to be a little easier (I hope) finding a job at my campus or near it, but I don't have a car so I can't travel very far either. I know, however, that everything's going to work out in the end, because it always does! I'm on the right path, and I will keep smiling because I know I will get there some day. Hardships cause us to learn and grow, which we can't really do if we don't suffer at some point.

I'm also working out again! I started riding my bike and I feel amazing because of it. I'm using my compression leggings as well as taking salt and my new medication called Florinef which I can't tell if it's helping or not. The only good thing about it so far, is that it hasn't caused me to feel the same symptoms I got with the midodrine. The downside, however, is that if this one doesn't work, I'm literally SOL and there isn't anything else I can take to treat my POTS symptoms. I'll have to rely on exercising, salt, and compression in hopes of keeping my symptoms at bay. I really hope it'll be okay and will work, because I want something to at least minimize these symptoms. I knew going into treatment, that you can't eliminate the symptoms fully, but you can at least decrease them.

This brings me to another topic.

I am trying to find ways to spread more awareness about this. I want to see if I can talk to someone somewhere, and see if we can figure out a way to get more funding for research into autonomic disorders because dysautonomia is not something many people know about. It's something, however, I think people should be aware of with how I've seen it coming out more now. I want there to be awareness and funding because we don't have a cure or real treatment plan just yet. For those of us who really don't get better with the treatment there is now (which is trying to treat the symptoms), we have nothing. I want there to be a cure some day, I want there to be some kind of treatment that will work for everyone. The only way this is going to happen is if people realize that this is A REAL THING.

Typing in POTS syndrome onto the internet within google, brings up things like "is it real?". I want this to go away, and I want people to realize that this is a real thing that others should know about. I've suffered so much because of this, and I want others to see that it's just as bad as other chronic illnesses that you can SEE. I'm still working on the details, but I'm going to try to figure out a way to raise more money and awareness.

That's about it for the update today! I hope this finds you well, and that you are all going to enjoy yourselves this weekend! I'm a bit of a busy bee the next few days, so we'll see if I can get another post in before Monday! I start my ASL (American Sign Language) class Monday as well, so I'm a little nervous because it's hard to drive where that is.

Anyways, I was getting off topic. We'll talk soon, and I hope you all are well!

- Rosie

I feel like a guinea pig

Seriously. They keep trying all this different stuff with me, to see what will work, but I know it's just to help me feel better. This is just going to be a rather simple and short update, as I need to head out (which I'm going to explain within here too. Haha!).

So! We just got me new medication, one that I have seen mentioned a lot with POTSies. It's Florinef, which can apparently lower your potassium levels drastically if you aren't careful, so I have to go get a BPM within a week or two to ensure that I'm okay on this medication. I'm hoping it'll help, because due to the hot weather my symptoms are getting worse. Not only that, but my heart's fluttering a lot now and I think I've figured out why that is: SUGAR.

I'm not a big sweets fan, but I do LOVE sugary sodas. Not great for you, I know, but after giving up caffeine due to making my symptoms worse, I needed some kind of fizz in my life. Breaking up is hard to do, y'know? So I've been drinking two of those a day and I realized a few days back, that after I drink them my heart starts getting palpitations. Nothing serious, of course, but they are a bit scary. You know that feeling you get in your stomach when you go down hills, and you feel as though you have no insides? That's how my chest feels, and as much as it's fun to get that feeling in your stomach, it's not a great feeling to have when it's with your heart.

So with further testing, I've found this to be the cause, and ontop of that, I had a slight rebound with my pancreas. It was just irritated from the amount of gluten I'd been eating recently. I'm gluten intolerant, I really shouldn't eat it, but I do anyways because how can you not?! That stuff's super good! But it's making my body sick, and I need to stop now.

Because of this, I HAVE NOW MADE A PLAN!

I can't exercise much yet due to my POTS, so I've decided to do the things I know I can do. I see all these people looking fit and healthy, and I CRAVE to feel like that. I know the only way it's going to happen is if I let it happen, so I'm going to do my absolute best to make sure I can get where I want to be.

So what exactly is this plan?

I will be riding my bike after I wake up, carry on with my daily activities, every other day try and go to the gym to swim a few laps until I can build up more tolerance to it, and then after dinner later at night, I'll go for another bike ride. This is fun to do, because I love swimming but the biking is going to be difficult. I have a severe phobia over bikes due to nearly dying with one (that's a loooong story, I won't get into it, so to sum it up I fell into many rocks and am lucky to be alive, let alone not even break anything).

Tonight is actually my first night riding a bike in 10 YEARS, so wish me luck!

However, these two things aren't tedious and are fun, so they won't feel like exercise even though they are. I'm going to try and get back into the habit of doing yoga too before bed.

I'll also be keeping a food diary, to make sure I'm eating healthily through out the day and I'm planning on posting it onto my tumblr account to keep track of it there as well, almost like my online diary (shorter than this one, of course).

Yesterday we spent out all day, celebrating all of us (my sisters and I) moving out and going to college, and we were able to get me compression leggings! They are actually REALLY nice. Very hot in this almost 90 degree weather, but they're relieving pressure on my head. I don't know if that's how they're supposed to work, but they are helping and I'm not about to complain about this. I just need to figure out how to keep my wonderful fashion sense with these things because they stick out of all the shorts I have.

That's it for now! Pretty short and to the point, and I'll start going through my exercise regimen once I full figure it out, and talk about my biking, yoga, and all of this that I'm going to be trying to do.

Thank you all, and to all a good night!

- Rosie

Thanum an Dhul, do ye think I'm dead?

I couldn't resist using that title... It's from a favorite song of mine called Tim Finnegan's Wake. I love Irish music, and drinking songs too.

Anyways, I have been long overdue for a post, and I deeply apologize. Things kinda went... Crazy out of nowhere, and a lot of things are suddenly changing more so than I ever though they would. Well, no, scratch that. I knew they would some day, but not THIS fast.

So why don't I catch all of you up to speed, eh?

Let's see... I got accepted into another college through transfer, I'm finally moving out of my parents' house and into a new apartment once I get a job to support myself (which means a summer job and a job there), I'm going to be taking an ASL (American Sign Language) class starting in June and will be going to school for social work to help developmentally challenged children, and then finally I got my neuropsych testing back.

So let's start with the college.

For those of you who have read my past posts, you'll have seen that I dropped out of college after my first year due to depression and anxiety. I should have mentioned this, and I'm sure I did, but if I didn't well.. New information, woo hoo!

I didn't think I'd ever go back to an actual campus, but one day after talking to my advisor something totally snapped in me and I just tried to apply for a transfer. It was terrible waiting for the answer, because I'd convinced myself that I wouldn't get in, that my grades from my mess up weren't good enough...

Boy was I wrong! Not only did they accept me, they accepted me within less than a week! Usually it takes them a week or so to process everything, but they got me accepted pretty dang fast! I was extremely excited and I almost started crying. I never thought I'd get into this school, it's my dream school... It's the school I wanted to go to ever since I visited the campus many years ago. I had other schools I wanted to go to, such as MIT and Northwestern, but those are ridiculously difficult to get into. My genius sisters, who are graduating two years early and going to college this year too, didn't even get in. So if they couldn't, how could I? Unless they thought of me as a diamond in the rough, that they could polish up and use as a transformation story. But I digress!

I love this school, and I'm not only accepted into the college, I've been accepted into their social work program. I do have a few more requirements I'll need to meet through the school itself, but I'm IN BABY! WOO HOO! I'll be starting life for real now, and going to live on my own too.

I decided not to live in a dorm, as I have a beautifully adorable cockatiel named Oliver who has to stay with me. He's bonded and if he loses me, I fear he might die of a broken heart, the poor baby. He needs his mommy! So I'm looking into apartments around there, and found a wonderful website specifically for this campus that helps you find affordable rentals for college students instead of living in a dorm. I just barely passed the requirement for living off campus too, so I'm rather happy. It really seems like everything is starting to fall into place now. I just have to try and get a job that will support me through out the school year before I can fully move. My parents said they might even be able to help pay for my first month of living if I am able to get a job up there, and then start paying for everything myself. I'm beyond ecstatic right now, if you can't tell. More so, I'm excited to move out rather than go to college. College is great for furthering education, but I'm finally going to experience ADULTHOOD. I'm going to be turning 21 out on my own and experiencing life. I cannot wait! ....But I also want to start buying things for my apartment. I keep going to stores and seeing items which make me go "hmm.... I could see that in my house". It's hard to resist temptation to buy things when you don't even have a place yet.

And then, of course, I'll be doing ASL this summer. Which again, for those of you who don't know what it is, it's American Sign Language. I love this language and I love how beautiful it is. I want to be able to use it.

I chose social work as well, because the two go hand in hand, and with developmentally challenged individuals, some cannot hear and rely on signing to get their points across. I am challenged with mental health and other disabilities that I understand fully well how hard all of this can be, and wanted to dedicate my life to helping others.

My Neurpsych Testing

This entire experience was rather insightful. I grew up thinking I was bipolar, OCD, and all these other labels they put on me that I can't even remember now. There were times they thought I was Schizophrenic due to a stress break I had with my mental health... But the results turned out rather interesting. I just suffer from Generalized Anxiety Disorder, and also sensory defensiveness as well as low emotional maturity (which makes sense, I cry over everything without meaning to). However, I would have to say I think I do have a small touch of depression caused by the low emotional maturity, because I do get low sometimes but never to the extent of those truly suffering from depression. I did back in the day, when I was in elementary and high school, but now it's pretty much gone.

This is great news, because it's rather easy to treat and it's nice to not have so many labels to carry around anymore, but also, it's harder because it's something that I'mt not sure if I can get the same help within school that I need and I can't apply for some of the scholarships I was able to before... But really, I shouldn't complain. I know how hard it is to deal with mental health, and I wouldn't ever wish anything like that upon myself or anyone else.

I also found out I have trouble storing information and do well with associating words with other words and items. That helps... And that's really it on that front. It's a pretty nice discovery if I do say so myself.

Random Blurbs

I realized recently that I probably have Fibromyalgia as well now, so we're just going to say I do, because it's rather hard to diagnose and my doctors don't know jack about it, so I'm not going to even ask. There's not much you can do about it anyways, from what I've found, so I'm merely treating the symptoms. I also had to do a hearing test, after my annual physical this week because my hearing isn't perfect. The test claims that I'm within normal ranges of hearing, but low in some areas... And I think this is BS because I know how I hear, and it's not well because I have to turn up the volume to obscene levels to hear music in the car and on my computer. Not to mention, when people speak quietly I either don't hear them or understand what they're saying... But it's not bad enough to the point that I need anything to help me with it, so I'm just going to monitor it and hope for the best!

AND FIN.

Quite a bit has happened, as you can see, and I've fallen behind on my exercising as well as with this blog. I'm going to do my best to get healthy again, and I've not fallen so far down as I usually do, so I think picking back up will go pretty well. I'm going to TRY to keep regularly posting in here, and I'm going to just post things about my daily life, how I coped with every day happenings and things like that.

So good night all, and enjoy your slumbers!

- Rosie

Hey, look! It's Big Foot!

I know, I've not posted here in awhile, and I was going to try to do a daily account of living with chronic illness but I found it is an unrealistic expectation. I should have known, but I was too excited getting this started. I was going to TRY to keep this regular, but now I'm thinking it's going to be whenever I'm able to update. Maybe someday I'll be able to do it on a mostly regular basis, but we'll see!

So, UPDATES!

I applied to transfer to another school.

I'm freaking out about this, because I have a very strong feeling I won't get in due to how horrible my grades were first year in college. I sort of flipped out and stopped going for awhile in the last semester. I got very depressed and was struggling with my emotions due to the reality setting in that my sisters really were a lot smarter than me. They are graduating this year at age 16. I'm proud now, but when I was struggling in my first year of college, taking remedial courses due to my inability to remember what I learn... I got VERY low. I realized, however, that the only one who let myself get that far down was me. That meant, of course, that I was the only one who could pull me up. I am my own life jacket! (This is totally deja vu, because I realize now I used these similar words in my essay on my college app).

I've now started taking life in a positive way, despite all the troubles that have been thrown at me. I won't let myself get down like that again, and I will continue to smile even when I'm struggling inside. I read somewhere once that if you make yourself smile, it cheers you up. When I was depressed in the past, I'd always pout and sulk in my room, bawling on and off. I'd never smile. Now I try to force myself, and I've been happier because of it. Not to say I don't get my low days... I know that if I don't get into this college, I will be upset for awhile and think of myself as a failure even if I have back up plans that are mostly guaranteed. It's just difficult to deal with negative emotions when you suffer from mental illness on top of having been hit with a disabling condition.

Whatever comes, will come and I'll embrace it even when I'm sad. I will make my life bright, even though it already is.

I've started working on my 'religious practice'.

Now, let me start off by saying this is by no means preaching. I do not like when others try to force their beliefs down your throat, or talk about it all the time to the point that it gets over done. I am not against any religion at all. I like to say I don't care about religion/same sex love/etc. because I think saying tolerant isn't a great way to express feelings towards another's personal beliefs or lifestyles. It's not my life, after all, and it doesn't affect me. I say I don't care, because I personally think we shouldn't care. If someone wants to worship the One-Eyed, One-Horned Flying Purple People-Eater then I really don't care. If it makes them happy, then I say go for it! As long as it doesn't harm others, I don't care what you believe. I'm very supportive of this sort of thing. But I'm not preaching. I'm just trying to explain my point of view and to explain my own beliefs slightly just to give an understanding of where I'm coming from, as it might show up slightly in other posts. Just to show why I might do certain things or feel certain ways. This is only for educational purposes about myself, and nothing more.

Anyways! I'm sorry for getting a bit serious there and somewhat ranting. I personally practice 'neo-paganism'. I don't really call it anything, as I don't do anything organized or specific. It's not something I do well with personally, so I've made my own practice based on my own beliefs. More or less, I work with the Norse God Loki and I also do work with nature as well as nature's spirits. I try to be down to earth, and I'm very caring about life as well as others. I go out of my way to be kind. Now, I'm not perfect so I get upset with others like anyone else and don't care for some individuals, but I do my absolute best to keep positive. I don't want to get too much into this, as I said, this is merely to explain my person beliefs in case I bring something up later. I love to be outside and do things out in nature.

It is also to show that this is one of my ways to deal with my problems. It really helps for me personally, to have something I can do and work with/believe in to grant me strength to carry on each day. It's very empowering to me, due to the fact that most paganism/wicca/what-have-you is all about self empowerment and self confidence. It really helps me, but that doesn't mean it has to help you. It keeps me grounded and keeps me thinking that everything will work out.

Enough about that, however. I don't like talking too much about this sort of thing, as it usually results in too much negativity and I would rather avoid that with my blog.

It's almost summer, and it's getting hotter.

In other news, I just went shopping the other day for new clothes as well as went out to lunch with my mother. It was a wonderful day, and I was able to get a lot of cute things! I'm not sure if I said, but my style is very vintage-modern. I LOVE the 50's style of clothing. I have an A-Line dress that is actually from the 50s and I LOVE it. I hemmed it a bit to make it better for modern times, and I usually wear other things with it to keep it closer to this time period. I don't like looking like I'm wearing a costume. I do my make up like their old pin-up girl style as well. Mostly natural eye color and eyebrows with the tailed eyeliner, then bright red lips. I have different shades of lipstick I use, either bright red, dark red, a more natural red, and then also this pinkish-gold color that's really pretty.

I was able to get this amazing polka dotted skirt that day as well as some nice shirts. I also got some cami tanks to wear under shirts to use for basic wardrobes. Then, of course, some shorts. I really wanted to get something more vintage-y but my tummy's a bit bigger than I'd like it to be, and that made finding those shorts a bit harder. I have such an awkward body shape, it's almost impossible to find bottoms that fit me. Haha. Oh, well! Everyone's different, and I still think I'm hella beautiful (it's okay to be egotistic about your looks. It's called self confidence! Just don't go rubbing it in other people's faces, and we'll be fine).

I'm glad to finally have clothes that fit me for the summer. It's been really hot recently and I can't keep wearing my dresses. They're cute and all, but a girl's gotta have variety!

I've started cooking again.

It's been a long time since I've felt okay enough to keep cooking on a daily basis. I was finally able to do it a few times this week. Not as much as I used to, of course, but still more so than recently. I've had some recipes on my pinterest that I've been wanting to do, and I finally tried two today!

One was cauliflower crust for pizza and that... Didn't fail, but I learned that I don't like cauliflower. I almost puked. I don't handle foods I don't like well, and this was just disgusting to me. I'm sorry to all of you who like it, but it's not for me!

The other recipe I tried tonight, however, was the complete opposite. It was absolutely DELICIOUS! I've had one heck of a time making crispy chicken from scratch due to having to be Gluten Free, but I was finally able to find something that worked amazingly. I made sesame chicken and it was breaded but it used gluten free cereal instead. I used corn chex but the recipe calls for corn flakes. We didn't have any of those, of course, so I had to improvise but it worked just the same! Couldn't have been tastier! I will definitely be making that again! And I hope to have this much energy to keep cooking.

I was even able to clean my room today! Granted, a few times while cooking and cleaning, my heart got a bit crazy but that's to be expected.

Well, that carried on a lot more than I thought it would.

This was a bit rambly of a post and it got away from me. Again. But hopefully it was a decent read. I'll be doing my best to keep this updated, but I'm very stressed and nervous at the moment over whether or not I'll get into that college. We'll see soon enough. They said you'd know in a week or two, seeing as how it's a transfer. I'm hoping it'll be positive, but I'm thinking not with how late in the year it was. Either way, I feel as though I'm on the right track.

So, talk to you later! And I bid you adieu!

Well wishes,

Rosie

Let the Sunshine In~

Well, today started out like absolute crap. Seriously, I'm not going to sugar coat it. I woke up feeling decently okay and excited for all I had planned today. I was going to go shopping, go to the gym, and also had a meeting with my school advisor to see about going back to school within the near future. I'd taken a year off due to mental health, and it worked out in my favor due to the POTS diagnosis as well as my pancreatitic issues.

However, if there's one thing I cannot stand, it is change. I'm very, very bad with change, even the slightest bit of change sets me off. Then on the opposite end of things, sometimes change doesn't bother me. The mind is a fickle thing, let me tell you!

My dad informed me this morning that I had to be home by 3:30 so we could take the other car into the shop. Well, the issue I took up with this was that I had planned to be out PAST 3:30 and stay in town to go to the gym with my friend. I'd had everything planned out, and now I couldn't do any of that. I had my appointment at 2 PM and it was already 12 PM. There was no way I'd have time to go to shop then to my meeting. So I was already in a bad place with this today, and this bad day had been coming. I saw it far off on the horizon early this week. I'd started to fall lower and lower due to little things happening as well as my trouble accepting being disabled.

I did my best, however, to remain positive as always. I'm literally a ball of sunshine a majority of the time and even when I'm down myself, I am always worrying about others instead. I do not like letting myself get low, because who likes feeling down in the dumps?

This worked for awhile, in all honesty. I took myself to lunch using money I don't really have to spend, but I knew I needed to do something to keep myself positive as well as get out of the house. Otherwise, well... There would be some rather unfortunate pillows who would go without their innards of fluff.

Realizing I didn't have enough time to do anything else, I just took myself straight to the college and hung out in the parking lot for half an hour on my phone. The time finally came to go inside and the meeting was honestly a big success.

We finally figured out what to do for me! I'd always struggled with schooling, and being in a school environment just doesn't work for me. I love people, yet I can't stand being around them. Once again, the MIND IS A FICKLE THING. (Rosie POTSy is a curious cat... If you offer me pheasant, I'd rather have grouse).

We realized online school is the best option, and we finally came up with a degree that seems perfect to me: B.S. in Social Work!

I'll also be learning ASL (American Sign Language) on the side, in hopes of using this in my job as well. I want to be licensed in this, to be able to help interpret. So I'm actually working on that right now, as I found a GLORIOUS website called ASLU, which has the basics you need to communicate FREE. This man is a professor in Sacramento I believe, and he is deaf. He thinks there should be resources available online for those who need to communicate with someone who is deaf or hard of hearing, without having to pay for it. I fully agree, because language should be free.

Anyways, getting slightly off topic.

This was all great and I was on a high, I called my mom and she'd had a bad day... I said I was pissed so she'd know I wasn't in a good mood, but she said she was too then we just hung up. This kind of pushed me over the edge and I just broke down on the way home. Many things had led up to this (my diagnosis, mental health, feeling hopeless, my grandparents ignoring me the last time they were here in favor of my college bound sisters, and many more things). I should have seen it coming and I think I did, but I didn't prepare myself for it.

I came home to find my mom sitting at the table with the box of chocolates my sisters and I got her for mother's day, and she offered me one. I took it, and she started to ask me about why I'd had a bad day. I started to tell her, and once again broke down. She ended up staying home with me tonight, for a mommy/daughter day while my sisters and dad went off to their Karate lesson.

It really helped me, I was able to talk with my mom and share the information about college. We figured out my best course of action really would be doing it online and I got more excited. It took me a few hours of being down to realize that you really do need to focus on the achievements rather than the things you have yet to achieve. Just because you haven't done it yet, doesn't mean you can't. Can't is just a word and honestly, there is only one person who is stopping you... And that's YOU. Harsh words, yes, but it's the truth! If you want something? DO IT. You may have to adapt it, to fit your personal needs, but there is nothing stopping you. It took me a long time to realize this, and I'm really starting to learn.

I was going to quote Yoda's famous "Do or do not, there is no try", but honestly, I don't think I agree with that logic. You CAN try, and if you fail? That's only a part of life. You'll learn from it, and be able to know how to do better next time. Don't let your failures and misfortunes keep you down. Focus on the positives! Remember, after a storm, there is always sun, so let it in and brighten up your dreary day! You'll find that a little bit of light will ALWAYS get rid of the darkness.

That's it for now, I have to go off to start working on my ASL for a bit before I get up earlier tomorrow. The grandparents were 'yelled at' by my father (their son) to tell them how much it effected me. They want to come down again to spend some quality time with me. I understand they want to make it up to me, but I just wish they'd apologize and leave it at that. It'll make me feel a bit guilty but working on feeling better about these things is a battle for another day. As Jordin Sparks' song says, "One step at a time, there's no need to rush, like learning to fly, or falling in love."

So until next time! I hope you all are well, and enjoy what's left of your Friday night!

- Rosie

Let's Talk About Spoons

This post should be fun! I hope... I'm hoping I can translate the Spoon Theory well but I will include a link to the actual resource at the end of this, in hopes of her explaining it better than I ever could. I'll still talk about it in here a bit as well as just discuss a bit about how my day went while using this Spoon Theory.

Of course by now I'm sure you're going: "....Spoons? Why the heck are we talking about spoons? And there's a theory about them?" Yes, actually, there is! But not about literal spoons. I quite love this metaphor as it's a brilliant way to help others understand how chronic illness affects those who have it. 

So, what are these metaphorical, glorious spoons?

You know how in the morning you wake up and you feel amazing? And how you feel like this is going to be a great day and you could literally climb Mt. Everest? You slept very well, and feel absolutely refreshed! Nothing is going to stand in your way today! Then some days, you wake up knowing you didn't sleep very well the night before, and you're just feeling a bit down on your energy... And you feel as though that day is going to not be as great as the others because of this?

Well, when talking about the Spoon Theory, we like to refer to that energy as your allotted Spoons of the day. In layman's terms: Energy = Spoons. 

This term was coined by Christine Miserandino, an author on a site called "But You Don't Look Sick".

It's a very good term and a very good metaphor for what this is (or would you call it an analogy? Jeeze, my English skills are off tonight).

Spoons literally means energy, as stated above, and she happened upon this way of explaining chronic illness to a friend of hers while out to lunch. I won't get into depth too much about her personal story, I will include her link at the bottom of this post as I said before, but its important to note why this came up.

Many people don't understand what being chronically ill means. As shown in the title of that website, an excuse many people use is that we don't look sick. It's true, because a lot of times what's going on is happening internally, out of reach of others' eyes. However, the one who is experiencing the illness itself is well aware. This is called Invisible Illness, because it's something that you cannot see with your eyes.
There will be days, of course, that you really do look as sick as you feel but for myself personally, it's only because I let others see by choice (or because I really just didn't have the energy that day to take care of myself properly).

It's very hard for some people to understand this, and my father is actually a prime example. He's in the belief (even though he claims he's not) that if you can't see it, it's not really there. His words and his actions make this quite easy to see that he feels this way.

The idea of using Spoons to represent energy was formed to explain this situation to others of this mind set, or just to those in general who might not understand.

Now to get back on track!

So, Christine was at lunch with her friend, and her friend asked her what it was like to be sick in the way that she was. She tried the usual ways of explaining it, and she just didn't seem to get it. Having gone through this myself, I can understand her frustration and her need to resort to simpler measures. 

In a moment of brilliance, she started to gather up Spoons and used this as a tangible way of explaining to her friend what it's like to deal with this kind of illness. She gave her friend a certain amount of spoons, and then told her to go through her daily routine. However, each thing she did cost a spoon (energy). 

This was to symbolize how those with chronic illness only have a certain amount of energy to use in a day, due to the symptoms we deal with. For myself with POTS, I get very tired and very worn out easily and have to pick and choose my battles for each day as do many others with chronic illness. Some get immense pain, some fatigue... It's merely to symbolize how long in a day you can go before you can't go anymore.

So by the end of her morning, her friend had already lost all of her spoons, which really helped to show how difficult this kind of condition is for those suffering from it. 

Here's an Example

To help explain this a bit more, I'll take you through my day today. 

I woke up this morning, with less spoons (energy) than normal. I had a bad night last night, and I couldn't sleep very well. I ended up with about 6 hours of sleep, which is hard for me when I get so tired easily. 

I knew that I had to baby sit today and that I'd need most of my spoons for that, but I was very tired and was worried I wouldn't have enough regardless of what I did today.

I would say for today, I had about 15 spoons compared to my usual 25.

I got myself out of bed, which cost me one spoon, and then went to brush my teeth which cost me another spoon. After this, I took myself down the stairs (which for me, costs another spoon) to get breakfast. Thankfully, breakfast wasn't very hard, so it didn't really tire me out at all so I won't say it cost me a spoon. I just popped it into the microwave then headed back up the stairs, which in turn did make me lose another spoon.

So, with just one morning, I'd already spent 5 of my 15 spoons for the day and only had 10 spoons left for the rest of the day. 

Eating, however, seemed to replace one of my spoons, granting me 11 instead of 10. 

Making sense? 

EVERYTHING YOU DO costs you a spoon (energy). And those with chronic illness usually have less spoons (energy) than those who are very healthy.

Hopefully this made sense, and will help you understand it! I aimed this more towards those who don't understand chronic illness rather than those who do. However, if you suffer from a chronic illness and have never heard of this theory, it's a good thing to read because it's so true! 

That's it for tonight, and tomorrow we'll pick up on the actual day to day happenings of being a Spoonie (this is what a lot of us have started referring to those chronically ill as and I LOVE it).

So good night unto you all, let's make amends if we be friends, and Robin shall restore amends! 

(hahaha, gotta love Shakespeare).

Well wishes!

- Rosie

(Resources: The Spoon Theory )

It's About Time! - My Journey Pt. 6

This SHOULD be the last post about this, and then we'll get going on my day to day ramblings. I'm exhausted right now, so I'm not sure this will be a great post. I went to the gym today after getting a small tattoo (which wore me out in itself due to the nerves over it. I've gotten three and I still freak). I did thirty minutes of cardio and then another thirty of weight training. Needless to say, it was an exhausting day. So let's get on with the show, yes?

April 30th, 2014

The time between my psych appointment and waiting for the appointment that would finally help me was TORTURE. I was so impatient and thankfully it was far enough away that I eventually forgot about it. Well, the week before my appointment, my body decided it was a wonderful time to get MONO. I was freaking out at this point, that I'd be too sick to go to that appointment. I ended up in urgent care on Sunday, the weekend before my week of dealing with Mono. Due to my POTS, I was terribly dehydrated and had to get an IV for fluids. I felt a lot better afterwards but my throat was still sore. I ended up back in Urgent Care that Wednesday, finally getting diagnosed with Mono. This made my POTS symptoms flare up terribly, and I have never felt sicker. I was bedridden the entire week and sore near my spleen as well as my liver. This was just a mild case of mono with POTS, so I really don't want to know what a severe case would have been.

I asked the doctor if I could still do my appointment on the 30th and I made it quite clear how important this was. She said I could as long as I felt up to it. I made it my personal goal to make sure that I would be at that appointment. And I did! I was still really sick, had a fever going in but I was feeling a bit better... In terms of sickness, that is.

By this point, my nerves had started to spaz again, making me think that this appointment would be an utter failure just as the others were. Especially because Mono was making my POTS act weirdly. A few days before that weekend, my heart rate had been almost at 200 BPM near constantly, then randomly that weekend it started acting NORMAL. I was worried we'd go in and they wouldn't see anything.

We get to the appointment at the hospital and I had to fill out the questionnaire about previous health as well as heart conditions in our family. They took me back to do an EKG and shortly after it, we found out that my heart was already displaying my symptoms. My EKG had registered as "Sinus Tachycardia, but otherwise normal". I got a little excited at this point, but did my best to keep my cool. I didn't want to think anything of it until we saw the actual doctor.

We headed back into the room now, and the nurse came in to do the medication, allergies, etc. questioning then we moved onto testing my BP and heart rate while sitting and standing. We didn't even do it at the desk as per usual, we just went straight to testing the complaint of POTS. This pleased me thoroughly, but I was once again concerned that nothing would show up.

I WAS WORRIED FOR NOTHING, LET ME TELL YOU!

Resting heart rate while laying down. due to being sick, was at 102. The MOMENT I stood up, it jumped all the way to 132. The nurse said this was definitely indication of POTS but she was a nurse, she couldn't really see anything. By now, my mom and I were grinning excitedly but I still wouldn't let myself get hooked on this finally being the day I got answers.

The nurse practitioner came in and started going through a lengthy interview process with me. She told me afterwards, that some of my symptoms coincided with POTS but I knew all of them did. I wasn't going to say anything to her, of course, because doctors and nurses don't like when the patient acts like they know more (when honestly, I did know more than she did and it was obvious). She said the doctor might want to do a tilt table test but they'd for sure be doing an echo cardiogram.

The doctor finally came in and he thought I said something about my symptoms that I did not, which led him to think I had something called Vasovagel. I'm not sure still what this is, but we looked into it and it was NOT me. He wanted to do a tilt table test to check for this but said that treatment for POTS and this condition were pretty much the same. He said I had POTS, there was no question because we'd had three different instances of it showing up and that was enough to diagnose it. He said we could do the tilt table to check for the Vasovagel but that was all we'd need it for. Seeing as how I didn't have those symptoms for that, even though POTS and this condition fall hand in hand, we decided tilt table was unnecessary.

So we'd gotten me medication and salt tablets, which the medication sucked. We can get into that in another post, and we also got the letter in the mail today explaining the situation. I had called later the day of the appointment because they didn't put this diagnosis down for me which was upsetting after the months we'd gone through to get it... And we finally got the letter they'd told us we'd get today, but it said something along the lines of "your symptoms do coincide with POTS and you do have two instances to back this up, but we did not do the tilt table to confirm this diagnosis". So they still didn't give a definite answer, but sent information about POTS to us to learn more about it. Which I don't really need, I know a lot already. It was just aggravating that they still didn't give it as a definite diagnosis, even though the doctor said I had it.

Either way, I have it ON PAPER now that I have POTS (even if it's not saying it word for word), and that's all I care about. My nightmare had FINALLY ended and I was happy. Well, I AM happy. Pretty dang happy if I do say so myself, but now comes the harder part... Learning to deal with a chronic illness and the trouble it will bring into my life.

So that's my story! That was my awful, awful journey through diagnosing but even though it was sucky, I really can't complain. This is amazing to get diagnosed so quickly. Usually it takes at least a year or so before someone gets answers. It's taken even a decade to get answers for others too.

Until next time, readers, and I wish you well!

- Rosie