Thursday, May 29, 2014

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

Sunday, May 25, 2014

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

Thursday, May 22, 2014

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

Tuesday, May 13, 2014

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


Friday, May 9, 2014

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

Wednesday, May 7, 2014

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 )

Tuesday, May 6, 2014

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

Monday, May 5, 2014

You Don't Know What You're Talking About - My Journey Pt. 5

I know these posts are lame and somewhat boring. I'm trying my hardest to make them somewhat entertaining, but really, this is some not so fun stuff to read but it must be shared to help you understand where I'm coming from! That, and I really feel like others who have gone through this will benefit knowing that others have suffered as well. I know I do, when I see others talking about their issues with this condition or others that are similar that leave the doctors clueless. That and if you're like me, I get a kick about reading about others issues. I don't enjoy their misery, I'm just intrigued in reading other people's accounts of their health journey.

Sometime In March

My birthday had come and gone, I was thankfully able to spend some time with friends at a hotel over night then do some shopping. It was a bit too much for me to do, but it was fun none-the-less.

After that weekend, though, reality came back and hit me hard. I was at a loss and had to wait until I could see my psychiatrist before anything more could continue on. I was low. Very, very low with morale and just my over all way of thinking and feeling. I felt like it was hopeless to continue on with this, and I was starting to believe the doctor. Nothing was wrong, right? The heart rate, the dizziness, the headache and the fatigue was just in my head! And when I was sitting, I'd feel just fine! At the time, of course, I didn't recognize the correlation between standing and sitting just yet.

The time finally came, however, to see my psychiatrist and I couldn't be more nervous. I was a ball of nerves. You could probably bounce me up and down like a bouncy ball due to how tense I was.

I honestly don't remember too much now about that appointment, but what really stands out is when my psychiatrist brought up POTS. He asked me if my symptoms got better laying down and if it happened when I stood up. I said yes, I hadn't thought of that, but it did feel better. So he tested my vitals within the office and it showed the POTS.

This set me off on a huge researching endeavor. I learned so much and the more I read, the more I realized this was ME. I was hell bent on making sure my doctor diagnosed me with this, because at this point I didn't know what else it could be. I called my doctor later and told her nurse what we thought it was and rather than talk back directly to me, they merely transferred me over to a cardiologist.

Now, I would separate this into another post, but I've already managed to get myself riled up about this appointment that I really need to get typing on it in here.

March 20th, 2014

This was the day of the cardiologist appointment. I was excited and I knew that I'd finally get answers. Or so I thought. We went in, my mom insisting to come along to this appointment. She was now thinking something was going on despite not believing me before. She was paying for the appointments, as was my dad, but I was pretty sure they were only doing it to prove me wrong, that nothing WAS wrong. This is something they do often, whether they realize it or not. They don't ever believe me when I say something's wrong due to making up stories as a child. They fail to see that I am now a young woman, no longer a teenager/child wanting to get out of class.

We do an EKG in the office, it was normal and the doctor comes in. Instead of testing the theory of my heart rate changing from sitting to standing, he starts to tell me about his own 'professional opinion' without doing any further testing or any kind of searching for what could be going on.

The conversation more or less went like this:

Well, unfortunately when we reach this point and everything comes back to normal, there isn't anything we can really do. You're healthy on paper, but yet we have the heart rate raising. It is more than likely Sinus Tachycardia, which changes during breathing in and out. All you can really do is exercise more and drink a lot. There isn't a need to check into this a bit more. I don't think it's POTS, we would have found that in the Holter Monitor testing

Well as you can imagine, I was BEYOND pissed and by this point, I wasn't taking no for an answer anymore especially now that my mom was starting to side with the doctor rather than her daughter. I KNEW something was going on but no one would listen. I had HAD it. I kept pushing and pushing, insisting it was not with my breathing and that it ONLY happened when I stood up/sat up rather than lay down. Finally he said he'd have the nurse come back in and check my vitals laying, sitting and standing. Why he didn't do this in the first place, knowing the complaint was BEYOND me. As I said before, I'm not happy with this doctor's office in the slightest bit.

The nurse came in, and low and behold, my heart rate jumped up to 124 after I stood up. I don't remember what the resting heart rate was before that, but your heart rate shouldn't jump that high after standing.

The doctor came back in now, totally whistling a new tune. He admitted now that this was enough to diagnose POTS, but he still didn't do it. He decided we'd check my Cortisol by doing an Cortisol AM test to see if it was too high. He then suggested we go see an endocrinologist, thinking this might be hormone related due to the fact that I'd had pancreatitis so young and my lymph nodes were so swollen. Immediately, my mom and I didn't agree with this idea. We'd already tested all of my hormones, why did we need to go see an endocrinologist?

He also prescribed taking salt tablets to see if it would help.

So we're driving to the pharmacy to pick up the tablets, when we get a phone call from the doctor. He told us not to get them as he didn't feel we had enough evidence of anything being wrong to give me this. He didn't feel comfortable with it and he admitted he didn't know how to handle this as he didn't know what was going on.

On top of that, he was refusing to give me a doctor's note for my job, due to the fact that there wasn't enough wrong with me to keep me out of work when I wasn't able to work either.

Once again, we were back at square one and I was about to lose it. I called my psychiatrist and asked him for help, if he knew of anyone that could POSSIBLY help me with POTS. And then he told me the information that would be my saving grace. He told me about this clinic, that specialized with fainting and the heart, and that they might know how to help me. Something about this just told me we were finally on the right track, but I wasn't about to let my hopes climb sky high just yet.

So there you have it! Things were finally starting to look up after months of issues, and my job was AMAZING through out this, which I've failed to mention. They were very supportive.

We'll pick up again tomorrow, so I bid you adieu and wish you well!

- Rosie

Sunday, May 4, 2014

I LIVE - My Journey Pt.4

Well, that was an unexpected two days off. I had meant to come on again last night and finally get on with this story of my diagnosis, but... It wasn't happening. I went to work out for 25 minutes and ended up talking with my friend for awhile longer due to some unfortunate situations going on in her life at the moment. Then after that, I just crashed due to rearranging my furniture due to a spider being found in my bed. You know, the logical thing to do after something like that transpires. I hate spiders, okay? Don't judge me!

Around February 6th, 2013

So, I was wrong in the last post about all of this. Things didn't really start to get too bad until AFTER this appointment itself.

I went back to the doctor, and we realized nothing was wrong with my heart itself. Having tested everything else, we needed to start looking at other things (and we never did an MRI, which to this day still bothers me. I have POTS, yes, but due to my anxiety I worry it's worse than that and I'm still not pleased she never did anything to look at my brain, because at the time, I was presenting symptoms of something much worse. If you cannot tell, I was not and am not pleased with how this situation was handled).

ANYWAYS!

We decided to check the function of my adrenal glands, as she thought I might have an adrenaline problem due to the heart rate and my body being sweaty randomly when I'm the type of person who never gets BO. So I had to do this lovely test that checked all of my hormones. It was a 24 hour urine sample test. Basically, you had this lovely little pee-catcher that you put over the toilet seat and did your business in that, then you had to pour it into a jug. My family laughed about it the entire time and referred to it as 'my pee jug'. It was somewhat embarrassing, but I got over it pretty fast by telling myself this would give me some answers. (Hahahaha. YEAH RIGHT)

I took it in the next morning, to ensure it got sent off right away, and we had to wait a few more days before it could come back due to it being out of our regular office. We also just found out recently, that our insurance doesn't really cover this and our doctor didn't inform us of this nor did they handle the situation well at all, so we have to pay 600+ dollars out of pocket now, due to their negligence. If this wasn't the only place our insurance covered, I guarantee you I'd be out of there faster than a kid running to their presents Christmas morning.

A few days later, when everything went to Hell

We got the results back, and everything was NORMAL. I could have told them that, because I had a feeling this was something strange within itself. I knew it wasn't related to hormones or anything of the sort. Well, I had been having some breast pain that day and because I didn't know if it could possibly be related to this issue or not, I sent the doctor a message about this. Because of this situation, she assumed I was paranoid and then remembered that I do see a psychiatrist for mental health... And decided to tell me that, after two tests, this was nothing and it was ALL anxiety related. I had NEVER been so angry or upset in my entire life. I saw that message and I broke down crying my eyes out.

I've dealt with anxiety for my entire life. I am twenty years old now, I know my body and I know how anxiety effects me. This came out of nowhere, I wasn't having any kind of stress. I wasn't in school, I loved my job, and that was it! Granted, my dad is a stressor in my life, but I've always dealt with him. That doesn't mean that I was even more stressed than usual and if I were, I'd have known. So she told me to go get psych evaluated and for those of you who suffer from mental health, you will know that this happens ALL THE TIME. My psychiatrist even agreed that it does.

So, I knew now that I would not be getting any kind of help unless I got cleared by a psych professional and because of this, I really started to doubt that something was wrong with me. I started to believe her, that it was all in my head and that I was just a big mess of mental health issues.

I set up an appointment with my psychiatrist and explained the situation, he wanted to see me as soon as possible, but soon as possible wasn't until early March, near my birthday.

I was down, and by this point, my depression was starting to spiral down as well. I wasn't happy or able to handle anything going on in my life. I put on a smile for everyone else but on the inside I was feeling incredibly discouraged.

I hate to leave this on such a sour note, but as per usual, this post has gotten away from me again. I will try to make another post tomorrow. I'm going to the gym again, and have some things to do, so I might end up too tired to do much of anything but if not, you can bet there'll be another post here.

May the Fourth be with you and I hope all is well!

- Rosie

Friday, May 2, 2014

Day Off

Well, I am exhausted today and I will not be writing a post. I joined a gym, as exercising helps with POTS and Orthostatic Intolerance, and I felt great after it, but it made me tired. So! I will not be posting tonight, and will try to pick up again tomorrow!

Until then~

- Rosie

Thursday, May 1, 2014

Well That's An Odd Heart Rate - My Journey Pt. 3

Is it obvious I'm already running out of title ideas? Seriously, took me awhile to even come up with that one. Then again, I was up at 7:30 am this morning after five hours of sleep. Saying I was tired would be a rather severe understatement. I need sleep, and will possibly be taking a nap after this post is written. I need my beauty rest, after all! And as per usual, I'll do my best to keep this short..... And probably as per usual, it will get way out of hand and go much longer than actually intended! So do your best to stick around, and if you're attention span is anything like mine I understand if you.... Oh, that's adorable! My pet cockatiel is preening himself and he's fluffed up like the Stay-Puft Marshmallow Man! Wait. What was I saying again? (Insert awkward laughing here to lame joke).

January 15th, 2014



So I had won the argument with my mother to finally be able to see a doctor. The appointment was set for this day, and I was beyond ecstatic to finally make sure I was okay. We went to the doctor's office (my dad and I, as I was still too weak and tired to move on my own or walk on my own) and I waited to get called back. For those of you who have gone through a situation like this, when you have something scary happen to you that you don't understand, the The Waiting Room Destruction (as I like to call it) is horrible. You wait and wait for the doctor who is usually running behind, and during this time you are left alone with your thoughts! When you are like me, and tend to be worried about health issues, this is not a good time! You think of all the many possibilities you know of, telling yourself you have all these terrible things, then try to rationalize the situation by telling yourself that none of those things are true and you're probably just sick. I like to call it destruction because you are destroying your positive mindset at this point.

Finally, the nurse comes and you're able to jump up and run away from the tirade your mind had just gone through.

We went back with her, and did the usual routine: check my weight, ask about why I'm there, and then, we checked my vitals.

This is where things really started to get interesting. My heart rate was all the way up at 114 bpm. They marked this as slight tachycardia, as your heart rate shouldn't really be higher than 100 bpm, as said by the NIH (National Institute of Health). They didn't really think much of it, but the doctor came in and looked me over as well. Now, I was really lucky to get in to see her so soon. She's usually booked a few months out, but we decided after an incident with my pancreatitis (where her assistant we usually see, yelled at me for 'telling her how to do her job') that we were no longer going to see the other person... We just had to get in with her. Seeing as how this was rather severe, we were able to get in right away.

She didn't think anything of it, really, just thinking I had a case of pleurisy. I didn't know what this was, until I read about it online. Basically, your chest lining is swollen and it squishes all your organs there together which can cause the heart to beat a lot faster. Because of this and due to my headaches, she ran tests to check for any return of my pancreatitis as well as blood clots and regular CBC W Auto Differential testing. This is just when they do the basic screening of your blood, to check for abnormalities. All of this came back normal.

Of course, believing everything my doctor said at this point (not thinking that a doctor COULD be wrong, even though they're a human, not some God-like healer), I accepted this as the diagnosis and started to take Naproxen daily.

January 28th, 2014


As you can imagine, this did little to help me and a few days later, I ended up calling her again after realizing my heart was still pounding and my headaches weren't going away at all. Nothing I did would help these feelings, and I'd suffered from migraines and chronic tension headaches. This led her to be concerned there might be an issue with my heart, so she decided a Holter Monitor test would be needed. I ended up going to get it fit on to me soon after, and wore it around for 24 hours.

During this time, I had gone to hang out with friends and play Pathfinder (remember how I said I was a geek? Yeah, I really am, and dang proud!). We went out to eat that night and we went to this place I'd never been to before. The food was amazing, but I ended up getting a hair in my meal. As disgusting as that sounds, I really didn't care too much and didn't want to say anything. My friend, however, an aspiring chef in culinary school, decided we should let them know of this situation. This made me incredibly nervous, and I felt my heart starting to beat faster than normal. I marked it down on my handy-dandy sheet that I was supposed to use to keep track of what was going on at the time of symptoms, and hit the little button to mark this moment. This was a significant moment for me, however, when I realized that anxiety seemed to make this worse.

Well, we get the results about a few days later and guess what? It was NORMAL. This was the second time that our tests bore no fruit, just rotten and empty shells of nothingness. This was when things started to get rather discouraging, but I didn't know JUST how discouraging things were going to become. Really. S%&* hit the fan around the next doctor's visit, after the next round of testing.

But I already can tell this got super, super long despite me constantly saying I'm going to watch myself. I love to talk, if it's not that obvious, and I want to make sure I'm being mostly thorough with this to show others going through this or who did go through this, that YOU ARE NOT ALONE.

We'll pick up again tomorrow, after I get home from the new gym I'm trying out. Working on getting healthier so wish me luck~

Until next time, adios and well wishes to you!

- Rosie