another new doctor

I'm going to see another new doctor this Friday. I feel like that's all I do these days... The doctor I'm seeing is an internist, and the appointment was originally made just to set up a doctor here in town as a GP, but I have felt so awful this week that I'm really glad I have the appointment. My POTS is pretty bad -- I've been incredibly dizzy the past few days. My back is absolutely killing me. I don't know if it's our bed or what, but I can't hardly stand it. Also, I have this tick bite that just won't heal. I got bit by two ticks the week of the 12th and one bite healed just fine. The other one is really super itchy still and red and stuff. I'm scared it got infected or I didn't get the head out or something. I'm scared this doctor is going to think I'm crazy or a hypochondriac or something because I'm gonna go in there for the first time and have like fifteen things wrong. I hope I don't hate her. I hope she doesn't hate me.

On another note, I still don't have a new job. I've started bcc-ing my mom into every email I send because she called me lazy the other day because I don't have a new job yet. I'm hoping that me blowing up her inbox with all the resumes I'm sending will prove to her that I'm trying. Probably not though... I'm getting really worried, because I have to buy my dress for Lindsey's wedding by the end of October and I was hoping to have some other bills paid off by the time that comes around. But if I don't find another job, I don't think I'm going to be able to afford any of my bills, let alone a $200 dress. As it is, I have people at work giving me money because they feel bad for me... I just don't know what to do...

I am supposed to be going out with a few people from work tonight, and I'm really nervous. I don't go out very often anymore because being in large crowds makes me feel terrible, plus I can't drink anyway. I have never been to the bar they're going to, so I don't know what to expect which makes my anxiety about ten times worse. I am going to take some Xanax before I leave, but today's been a pretty bad day as far as my POTS goes, so I don't know how long I'll be able to stay out. Plus I'm kind of scared Jessie's going to get mad when she finds out that I went out tonight, because she asks me to go out all the time and I always say no. Maybe I shouldn't go at all... I don't know! I wish I could just make split-second, spontaneous decisions like everyone else my age without having to worry about how sick I feel. I hate this.

I don't break down and cry very often about the cards I've been dealt, but two nights ago I did. I just wonder sometimes what I did to get the short end of the health stick. I was fine one day and then the next day I woke up and bam! - I felt like I had been hit by a truck. Why? Why me? Is this karma? I know I've done some awful things in my life, but come on! I don't exactly feel like I deserve this. And what makes the situation so much worse is now I have one doctor telling me my symptoms aren't all POTS, and another telling me the first doctor is wrong about it being migraines, so I feel like I'm back where I started - no one knows what the hell is wrong with me. I am so tired of being dizzy 24/7 that I could just cry. It makes me hate my life.

Anyway, enough of that. I have to go take drugs now so I can act like a normal 23 year old. My life is awesome...

a huge waste of a day

So I went to the neuro-ophthalmologist today, and I have never been so discouraged and upset by a doctor in my life. After spending all morning with the doctor's assistant (who I actually really liked -- she's going to make a great eye doctor some day.), the doctor finally came in to see me. The very first thing she did was reprimand me for having seen so many doctors for my POTS. She said there were "too many chefs in the kitchen" and I need to just choose one and stick with it because they will all end up changing my medicine and it will be bad for me. Well, I'm sorry that the first doctor I saw let his nurse try to kill me by giving me the wrong dose of medicine, and I'm sorry that the second doctor ignored the page from her exchange when I thought I needed to go to the hospital. I am of the belief that if I'm unhappy with a doctor I should find one I AM happy with instead of suffering unnecessarily.

So after she told me that, I was already upset, and then when all my tests came back normal she basically told me that the visual problems I'm having are probably just part of the natural aging process (I'm 23...). She also made me sound like I was crazy because she couldn't understand the way I was describing my visual disturbances so she basically made it sound like she didn't believe they were there, or that they were something other than what they actually are. After they dilated my eyes, she made me look at all these pictures of "visual snow" to see if that is what I see (which isn't what I see at all), but since my eyes were dilated it was so blurry I couldn't even tell what I was looking at. She basically told me she thinks that nothing is wrong with my eyes and that the doctor I saw yesterday is also wrong with a diagnosis of migraines. So if it's not POTS related, and it's not migraines, but nothing's wrong with my eyes, then what is it??? Just aging? I'm twenty-freakin'-three. I understand that floaters come with age. I will even admit that the one floater I have could be caused by aging. But the other stuff -- the dark spots or "after-images" as she kept calling them are NOT because of aging.

Another thing -- I told her that I have both double vision and extreme light sensitivity and she disregarded them both altogether. She didn't say anything about either of them. I think that is what makes me the most upset. Just because my tests came back normal doesn't mean that nothing is wrong. It just means it's not in my eyes. I purposely sought out a NEURO-ophthalmologist thinking that she would check into my optic nerve or other neuro-type things associated with vision, but literally every test I had done today I've had done before. This whole thing is just so frustrating... I don't really know where to go now. I really hope the neuro I saw yesterday can help me because if not I feel like I have really exhausted all my resources...

This week is finally here!

I saw a new neurologist today. I stayed up way too late last night and getting up early for an 8:15 appointment was not pleasant. I felt super crappy when I woke up, but after getting up and moving around, and then eating a little breakfast, I felt better. I had to stop at a gas station to buy a toothbrush on the way there, because I forgot mine when I stayed at Allyssa's last night, but I made it to MoBap in plenty of time. But then I got hopelessly lost and ended up in the area of the hospital where only staff are supposed to be. Eventually some random lady who worked at the hospital asked me if I needed help and she took me to where I needed to be (which I NEVER would have found if she hadn't helped me). I only had to wait a few minutes before being called back to see the doctor, which was such a relief because I have waited nearly two hours to see both my cardiologist and my first neurologist. The doctor came in and asked me all kinds of questions about both my symptoms and the situations surrounding my whole illness, which was nice. We spent about an hour talking and she only examined me for about five minutes. That was actually really important to me, because I just want to feel like I'm being heard by my doctors. She agreed that I have some vasovagal symptoms going on, but she thinks a lot of my problems aren't POTS related (which makes sense because even when my HR and BP are completely normal I have bad symptoms at times). She suggested I might have a migraine variant, which an ENT suggested back in November of last year, and she put me on a new medication, Neurontin. She took me off the Florinef/Potassium, which I'm glad about, and she gave me a script for Zofran for nausea. That makes me really happy because I have taken it before so I know how I react to it... My cardiologist gave me Compazine for nausea, but the side effects for that are terrifying, so I never took it. My new neuro agreed with me that Zofran is probably a much better medication for me. Anyway, I go back to see her in six weeks, and hopefully I will show some improvement by then. I'm cautiously optimistic, as always, that this might be the thing that helps me feel better. She did mention that sometimes when people get something like this, it never goes away and sometimes it does, which scares me, but I guess I have to live in the present and just take things one day at a time...

I am going to see a neuro-ophthalmologist tomorrow, and I'm pretty excited about that too. The neuro I saw today said that they are going to run a ton of tests on me tomorrow and that a lot of patients she sends there return very impressed with the amount of stuff they do. The appointment is supposed to last three to four hours, and I'm excited to see what they can figure out. I hope I like this doctor... I've had some not-so-great doctors in the past year so I hope I can finally find some that I like. I hope after I see her tomorrow I will have some more answers!

The neuro wrote me two scripts today, but I can't afford them at all. I really hope my mom can buy them for me, but I used her debit card twice today without asking, so I'm scared she is going to be mad and tell me no if I ask her to buy my medicine. It shouldn't be that expensive, so she shouldn't have a problem with it, but I hope she doesn't just say no because she's mad... Plus I'm going to need her to pay my co-pay tomorrow too...

30 Things About My Invisible Illness

I wish my friends and family understood... I think David gets it sometimes, but I don't really think anyone truly understands how miserable it feels to be inside this body. Last night, I woke up at 12:30 and panicked because David wasn't in the bed with me. I went up the stairs to find him and my heart rate went through the roof. I had to sit down on the floor of the office because I thought I was going to faint or throw up. I figured if I was on the floor and thought I was going to vom I could just crawl to the bathroom... But aside from the fact that I was a little sweaty, David couldn't tell anything was wrong with me. That's how it is with basically all my symptoms... No one can see them so they think I'm making them up... or that I'm a hypochondriac (that one REALLY pisses me off...)... or that I'm looking for attention... or any other number of various things people think about me that are WRONG.

*To interject here: I just had to get up to get something to eat before I could finish this blog because if I hadn't I might have fainted. Beta blockers mask the symptoms of low blood sugar, so when I start to feel light-headed or nauseous because I'm hungry it's almost too late. When I first read about this being a possible side effect of this medicine, I didn't think it would happen to me because I have never been formally diagnosed with hypoglycemia (even though I suspected it...) so I figured I was just being over-dramatic and that I didn't have it. But it has gotten to the point where I have had to ask my therapist if she had something I could eat so that I didn't pass out during a 50 minute session... So embarrassing...*

Anyway, I found the list below on another blog written by someone who also has POTS, and I thought it might be helpful to anyone who reads my blog... not that my family or friends actually do, but I guess I can be hopeful, right...?

1. The illness I live with is: POTS, or Postural Orthostatic Tachychardia Syndrome

2. I was diagnosed with it in the year: 2011. January to be exact.

3. But I had symptoms since: August 4, 2010. That is the date all of this started. But the more that I think back about my life, the more I wonder if I haven't been sick for longer and not known it... But 8/4/10 was the day it all hit me at once and I tried to keel over at Cedar Point. =(

4. The biggest adjustment I’ve had to make is: HA. I have to pick one? How about not being able to hang out with friends because I feel like I might faint or throw up every five seconds? Or how about when I actually CAN muster up the energy to get ready and go somewhere, the fact that I can't drink alcohol because it dehydrates me so badly and dilates my blood vessels so much that I think I might die. Or how about the fact that I literally can't go outside anymore without sunglasses on, even if it's overcast, because my light sensitivity has gotten so out of control. (To be honest, that isn't too awful, especially considering I look so awesome in my aviators, a la Top Gun.)

5. Most people assume: I'm not really sick. Or that I'm being over-dramatic. Or that I'm just trying to get attention. And I hate it...

6. The hardest part about mornings are: opening my eyes. I know that if I lay in bed too long I will feel worse than if I just get up, but the simple act of opening my eyes is awful. It is the time of day when I feel most dizzy (presumably because I've been laying down all night), and opening my eyes reminds me that I'm most definitely still sick. Every single day I wake up and open my eyes to a spinning room.

7. My favorite medical TV show is: Mystery Diagnosis or House.

8. A gadget I couldn’t live without is: my cell phone. Mainly because I am scared to death to go anywhere alone without it in case I feel too sick and need someone to come rescue me. I even take it into the bathroom with me. (You can say that's disgusting, but it actually came in very handy when I needed David to call me an ambulance in May...)

9. The hardest part about nights are: having to go to bed so early. I am an 85 year old trapped in my 23 year old body.

10. Each day I take: Metoprolol and birth control pills at night, and Florinef and liquid potassium in the morning. But check back in about two weeks, because my medicine is forever changing...

11. Regarding alternative treatments I: would like to learn more about them from a doctor. There are lots that I have heard about between forums and articles and such, but I'm honestly scared to try them. Messing with the heart is no joke, and I don't want to screw anything up. I do try to eat more salt than normal, but I'm not a big salt person, so I probably don't get enough. Also, I am literally like the most hydrated person I know, so obviously increased water intake is something I also do.

12. If I had to choose between an invisible illness or visible I would choose: is neither an option? I obviously wouldn't want to be sick at all. They both have downsides, though, so if I had to choose I don't know which I'd pick. Having people always doubt me is crappy, but I don't know if I'd really want a visible deformity and have people staring at me all the time either...

13. Regarding school: I am done with school for now. The first semester of my senior year (I was sick but undiagnosed) I missed a lot of school due to doctor's appointments, and I missed a few classes here and there because I was too sick to go. The second semester (I was diagnosed in January before classes started) I did better, but sometimes I was still too sick to go to class.

14. People would be surprised to know: that I'm even sick. Since no one can see my symptoms, they usually have no idea until they catch me checking my pulse or massaging my chest. I don't really tell anyone unless it comes up -- like when this dude Jason I work with REPEATEDLY asks me if I went out and got drunk the night before because I'm acting sluggish in the morning, and I have to REPEATEDLY remind him that I can't drink and that I'm just sick.

15. The hardest thing to accept about my new reality has been: that POTS could be forever. I try to remind myself that it can go away (which I've actually seen happen to Kaitlin's roommate), and that a lot of times when people get POTS because of a virus (which they think is why I have it) it does go away. It's just hard sometimes to remember that even if it does go away it's usually in 2 to 5 YEARS. But then I remind myself that I have already been sick for a year, and that usually helps...

16. Something I never thought I could do with my illness that I did was: a lot of things. Basically anything that involves being in a crowd of people or out in the heat is something that I always think I can't do, but then I just try it and usually it turns out just fine.

17. The commercials about my illness: have yet to be made. I wish there were something on TV about it at all, but there isn't, so people (even doctors and nurses) generally have no idea what I'm talking about when I say POTS. Couldn't they come up with a name for it that didn't sound so dumb to say? There was an episode of House about it once, and that makes me feel a little better.

18. Something I really miss doing since I was diagnosed is: being spontaneous. I miss being able to just be like, "Sure I can go do that thing you're inviting me to do. Give me five minutes to get my stuff and I'll be on my way." Now it's more like, "Oh you have a wedding you want me to be in in June 2012? I'm not sure I'll be feeling up to it, so you better check back with me later. Also, I hope you don't mind if I'm that guy -- you know, the one who faints at your wedding and ruins your wedding video while simultaneously giving you something to send to America's Funniest Home Videos... What's that? You do mind? That's what I thought."

19. It was really hard to have to give up: partying. Even before I got sick, I was sort of leaning toward the whole "drinking is evil" camp, but I'd still like to be able to hang out past 9:30 on occasion.

20. A new hobby I have taken up since my diagnosis is: learning about POTS. I am constantly trying to learn new things about it, and I'm always looking for ways to feel better.

21. If I could have one day of feeling normal again I would: sleep in. Then I'd get up and skip breakfast because I don't have to take medicine in the morning. Then I'd go take a walk in the sun without worrying about being road pizza after I faint in the street. Then I'd go to Happy Hour and have a couple drinks -- and I'd be able to sit at a high-top table without feeling like all the blood in my body has seeped out into my shoes! Then I'd drive at night without being crippled by the blinding headlights coming at me. I'd stay up late watching TV with David and go to bed without searching around for the other half of the pill I cut up the night before.

22. My illness has taught me: to think about the things other people might be going through that I can't see. It has also taught me that there are a lot of people right here in my own town that are far worse off than me. But it has also taught me to be very annoyed when people complain. Especially when they complain about something they can control -- like a hangover.

23. Want to know a secret? One thing people say that gets under my skin is: "I think it's all in your head." Well thank you mother, I'm glad you feel that way... I wish she could live inside my body for just one hour. Or just go up a flight of stairs in it.

24. But I love it when people: stick up for me. David has stood up to my mom for me on several occasions, and Jessie has done it too, to people at Chili's.

25. My favorite motto, scripture, quote that gets me through tough times is: that shit'll buff out. I have to remind myself that (hopefully) in a few years this will all be a distant memory.

26. When someone is diagnosed I’d like to tell them: that it could be something life-threatening that they are dealing with. I have to tell myself this all the time to stay humble.

27. Something that has surprised me about living with an illness is: how angry I still am and how much I still don't know about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: understand. That's all I really want.

29. I’m involved with Invisible Illness Week because: ...well I actually missed it by about a month.

30. The fact that you read this list makes me feel: important.


When I first got diagnosed with POTS I started my research about the illness at Wikipedia. The symptoms I currently deal with are visual disturbances, headaches, nausea, dizziness (even when I'm laying down), brain fog, fatigue, chest pain, digestive issues, difficulty breathing... and more that aren't as bad... A lot of the anxiety-like symptoms are taken care of by the beta-blocker, like the chills and tremors, but I still get anxiety a lot, and that makes the dizziness worse. I take Xanax as needed to help with that, and the people I work with joke around and say I should sell it to make rent. I wish they could only understand that I actually need it to be able to go out in public sometimes... I only wish anyone in my life could really understand. If they were to spend just one hour in my body, or even just go up a couple flights of stairs in my body, I think they would have a much better idea of what my life is like...

things are always the same...

I could update and update and update this blog, but things always seem to be the same: I have no money, I am lonely, I'm tired of being sick... Nothing is changing, and I hate it.

I have been looking for jobs like crazy, but I'm under-qualified for every position I want and no one is giving me a chance. I have been considering cross-training as a server at Bandana's, and I have also been reconsidering asking the manager at Chili's for my job back, but I'd really like to find a day job. But the problem there is that if I go back to school it will be full time, during the day. So should I really get a day job if I'm going to have to quit it in less than a year? But, is my health good enough to wait tables every day? I'm very torn...

However, I don't really have the luxury of sitting around trying to make a decision. I literally save EVERY single penny I make, and I still can't afford rent each month, let alone all the other bills I have. I have been selling things on craigslist and amazon like crazy, but it's just not cutting it... We got our deposit check back from our old place, and it wasn't NEARLY what we thought it was going to be. Since it wasn't enough to pay my mom back what we owe her though, we decided to just keep it and apply it toward our current bills, which helped me make rent this month. And I went on a job interview yesterday for a position at Joe Machens... but it doesn't really seem to be my type of job. If I get the position, it would be a major pay increase, but I'm scared I won't be able to do what the position requires... or that I will hate it. Plus the hours are terrible. I'm definitely not used to working 40 hours a week...

Now that David is back in school and Jessie is dating Bob again, I am alone a LOT more than I like. Even when David is here, he is doing homework upstairs, so it's not like we're spending a lot of time together. And when Jessie is here she is up in her room, or doing homework also... I think I've done something to make her mad lately, but I'm not really sure what... Ever since she and Bob started dating again things have been super weird between her and me. And it sucks, because I don't really have any other friends here in Columbia. Kaitlin and I haven't talked since the beginning of July -- I'm pretty sure she hates me actually. I can say I'm not sure why, but that isn't exactly true... I texted her and asked her if she could take me to the doctor but she was busy so she couldn't; then she texted me back saying we could hang out the next day but I misread it and thought she was saying she could hang out that day, and since I was feeling so shitty all I said back was, "Don't worry about it," which as a response to what she actually said was pretty rude. Plus, she and Jessie hung out after that at our house, when Jessie and I had had plans that night, and my feelings were really hurt so I was sort of cold to Kaitlin that day too... So I guess it's my fault that she doesn't talk to me anymore...

I wish the people I work with at Bandana's wanted to hang out with me. I actually wish I could move back to St. Louis, but when I really sit down and think about it I wonder if that would make things any better or not... Allyssa and I have been hanging out more lately, but only when I come in town. If I lived there I feel like it would be the same as all my other friends -- she'd be spending all her time with Derek and I would still be lonely.

To be completely honest, if I weren't sick I think my social life would be a lot better. Right now I'm sitting on the couch thinking about how if I don't focus all my effort, I might pass out. How could I possibly think about going out and having fun? Also, 99% of things I would want to do with friends requires money, which is something I'm fresh out of. That's why it makes me so sad that Jessie and aren't hanging out as much anymore. With her, we could just sit there and watch TV for four hours and that would be fine. But now I feel like that isn't good enough anymore, or I'm not good enough anymore, or something... It's just frustrating...

I am seeing two new doctors in a couple weeks. One is the neurologist my family doctor referred me to, and the other is a neuro-ophthalmologist my eye doctor and cardiologist both referred me to. I'm cautiously optimistic about seeing the two of them, because I feel like the more doctors I see, the more chance there will be to find someone who can actually help me. But I'm also nervous... I got some blood drawn last Friday and the doctor's office called me back today and said that my globulin levels were elevated. But when I asked what that meant, the person I was talking to (who I'm assuming was the receptionist) couldn't give me any information about what globulin is. She said it's only slightly elevated, and she made is sound like something I shouldn't really worry about, but since she had no idea what she was talking about I feel like I should take that with a grain of salt... I'm also nervous about the neuro-ophthalmologist specifically. The nurse or receptionist who answered the phone when I called the first time was a horrible bitch. I can't stop thinking about that, and I'm scared the doctor is going to be the same way... I know that makes no sense, but it still scares me. Plus, I have been having all these vision problems for the past year that have gotten worse recently, and I'm scared she is going to find something more serious than just POTS. Either way, no matter how nervous I am, I'm definitely more excited than anything. I feel like it's a good thing that I can still get excited about seeing a new doctor -- I feel like that shows I haven't given up on doctors altogether (even though I really really want to sometimes...).

My self-esteem is awful. Between not having a real job, being sick all the time, and feeling completely alone all the time, I feel terrible about myself. Plus, since I am bored all the time, I eat way more than I should -- which makes me feel even worse about myself. I know I need to start exercising, for more reasons than just to lose weight: exercise is supposed to help POTS patients tremendously. But I'm really scared. For one, I'm scared I'm going to pass right out on the floor of the gym, or on the side of the road, and embarrass the hell out of myself. Or even worse, not be found passed out in the street and get hit by a car or something... Or, I could exercise with someone else, but literally EVERYONE I know has exercised more than me (which isn't hard to accomplish) so they will be significantly better than me at it and I will look like a jackass. My cardiologist said I need to make time to exercise... Time is not the problem. I have plenty of time. It's motivation I'm lacking. Motivation and stamina and will-power and energy...

stressedddd

I singlehandedly ruined my driving record in about thirty seconds today... Apparently just by CALLING Geico to ask them a hypothetical question I was forced to file a claim about the damage done when I hit that tire iron on I-70. I called them (no agent, mind you. just a call center...) to ask if it would be considered comprehensive (good) or collision (bad) and as it turns out it is what's considered at-fault collision because I hit an inanimate object and not an animal. Once the dude told me that, I wanted to cancel the claim, but it was way too late. So I went ahead and filed the claim, and then I called my mom to tell her that I had done so. She said that I shouldn't have done that (even though my DAD is the one who told me to call them in the first place!) and that she would have just paid the extra $200 (cost minus deductible) instead of having me file a claim on my insurance. I was furious at this point, because if I hadn't called them, and she would have just paid to have it fixed, I wouldn't have any claims on my insurance record. Before this, I had a completely clean driving record (as far as insurance goes...), but now, all because I called to ask a HYPOTHETICAL question, I will be stuck with this claim on my insurance for three to four years. So then I decided to try to call them back and UNfile the claim. It didn't work. They closed the claim, which means they aren't going to pay out any money to us, but it will still be on my record for the next few years. Which means my rate may go up because of it, and if I try to switch insurance companies any time until then they will see that I filed a claim. It's so upsetting... If I had an actual agent (which Geico does not have...) I feel like this would have been prevented. I feel like the agent and I would have some kind of camaraderie and he would have told me NOT to file this claim. But oh well, I guess...

On a happier note, I have a clerical exam for the City of Columbia tomorrow. After I take this exam I can apply for a position in the city prosecutor's office, and I am really getting excited about it. My mom and I worked on the application and my resume/cover letter for a while tonight, and I hope it impresses them. I am going to the HR department to take the exam tomorrow, so hopefully I'm charming enough for them to remember me. I do have some reservations though... For starters, I'm scared the HR people are going to write me off right away because I look like I'm 18. I hope they have enough sense to read the Equal Opportunity page of the application and see that I'm actually 23. Also, I'm scared the person who administers the test is going to be a bitch, or super intimidating, or rude. Thirdly, I know I am going to have to take Xanax before I go up there so I don't barf on anyone or anything, but I feel like there is a fine line between being relaxed and being comatose. I'm scared if I don't take enough I will be hella nervous, but if I take too much I will be useless on the exam.

On top of trying to deal with my car and trying to get ready for this exam, we are packing to move this weekend. This weekend is going to be a total mess, because we have to be out of our current place on Sunday morning but can't move into our new place until Monday. So we have to stay in a hotel Sunday night, with Sam. I hope he's quiet and doesn't get us kicked out... Also, since our stuff will be in a moving truck for two days, I have to pack everything that might melt or get ruined in the heat in a huge suitcase and bring it inside the hotel with us. Plus, we don't have any help for Monday, so the only muscle we have is David. I really hope we can come up with some help by then, because I'm completely useless when it comes to carrying heavy things, especially with POTS and especially in 100+ heat indexes. Mom and Jessie aren't a whole lot better, although Jessie is abnormally strong for her build...

Anyway, I am going to get everything ready for tomorrow and go to bed. I don't want to look like a zombie in the morning. Hopefully I will have good news in the job department soon...

new stuffffff

My sunburn is almost gone. It peeled really bad last week, and it's still kind of a purpley-red color, and it itches, but it is much better. I still look ridiculous, but whatever...

I have been working a lot lately, because I am very behind on bills. I didn't pay the last part of my rent until the 15th. I am finally starting to get caught up on my bills, but there are a lot of things coming up that I need a lot of money for, and I'm getting scared. I only have like $1.33 in my bank account, and I don't get paid until the 29th. And my paycheck isn't going to be fantastic because I only make minimum wage... So I am going to end up having to borrow money from my parents, and I do NOT want to do that. I have already borrowed $90 from David. I hate being poor.

I have been applying for jobs and sending resumes for the last two weeks, and I have gotten nothing but rejections so far. I am under-qualified for everything, because the only jobs I've ever had were food services or retail. It's frustrating, because I know that if I actually got an interview I would most likely get the job. I just wish people would give me the benefit of the doubt...

I just can't catch a break

I really hate my life. If it's not one thing, it's another.

This past week has been relatively symptom-free as far as my POTS is concerned, and on Monday, the fourth, I was actually able to hang out with my family all day OUTSIDE (this is a huge accomplishment) with little to no symptoms. Except I was an idiot, and didn't put sunscreen on my legs, so now they are so sunburned I can hardly move. They are incredibly swollen, and I have what appears to be the beginning of a blister on my right thigh. I have gone through almost a whole bottle of aloe and it doesn't really seem to be helping much beyond the actual application cooling my legs off momentarily. Cool baths help a little more, but they're extremely difficult to do, not to mention the fact that I freeze the whole time I'm in there. I have missed two days of work due to this already, when I really needed to be working so that I can pay rent on Friday (which is already three days past due...)... I have no idea how I'm going to pay rent, but I can't even move, let alone think about how I'm going to deal with that.

On top of all that, Jessie has an amoeba in her eye or something, so she has really needed me this week and I couldn't be there for her because I've been in so much pain myself. I feel like a huge letdown.

AND... David keeps telling me how me being sick all the time is bringing him down and making his life miserable and what not, and that is making me feel even more miserable than I already do. I finally told him last night that some days I wish he weren't in my life because I feel like that might make my life easier. It went over better than I thought it would, but now I'm scared he's going to use it to break up with me and make it sound like it's what I wanted. (Which isn't true. I don't want to break up, I just want him to stop telling me how miserable I make him.) It's just super frustrating to deal with all this shit that's already going on with me and not have the support of the one who should be the most supportive. Especially considering my parents think I'm batshit crazy.

Anyway, I'm trying to find jobs online right now, so I'm distracted. More later.

I can't believe I'm so miserable

I went to a new doctor for my POTS last Friday. I was so excited. She changed my medicine to the one my mom's friend had suggested and also prescribed me the medicine that Allyssa took. I was so hopeful that the new medicine would help me. I took it for the first time Friday night, and I didn't feel any different on Saturday. If anything, I felt slightly worse. My anxiety was completely out of control. I'm not sure if that was because of the medicine though, or because I was scared of possible side effects of the medicine. I took it again Saturday night, and I was completely miserable on Sunday. All day it felt like I was going to faint or like I was going to have a heart attack. Then, when Allyssa and I were getting ready to order food at dinner, my heart rate was crazy. It was incredibly slow, and then it would speed up very rapidly. It was so scary that I had Allyssa take me to Urgent Care. They did an EKG, gave me an IV, and did bloodwork, but by the time the IV was done my heart rate had completely stabilized. I don't know if it was because of the IV, or because of the Xanax I took before we left dinner. Either way, the Urgent Care doctor told me he assumed this reaction was because of the new medicine, and that I should not take it anymore and call my doctor first thing Monday morning. So that's exactly what I did. And I was bed-ridden yesterday, basically. My heart rate was totally out of control. At one point, I stood up to go to the bathroom, and my heart rate went through the roof, just from standing up. I actually got tunnel vision, like I was going to faint. It was terrifying. So I decided to go ahead and take my original medicine last night, just to keep me from being completely incapacitated today while waiting for my doctor to call me back and give me further instructions. When her nurse finally called me back this morning, her instructions completely blew my mind -- my doctor wants me to take MORE than I had originally been prescribed. I am terrified that I'm going to have a freaking heart attack in the night or something. Or that I'm going to be completely unable to move tomorrow. I really hope it's not like that, but I can't help to worry about it. Especially considering I'm going to most likely be alone tonight because Jessie is going to go out, and then she works tomorrow during the day. And of course, David's gone, which is a whole separate issue that I'd rather not address, because that just really stresses me out... I just wish I could go stay at a hospital and have them take care of me until my medication is stabilized. I hate not being able to get help except between the hours of 8 and 5... if I'm lucky.

THIS FUCKING SUCKS.

some big girl thoughts

So I started a blog post on June 1 that I never finished because I didn't feel like it. It was basically just a list of things to bitch about. The things below that are in italics are from that blog post, and the regular font that follows is how I am feeling about those things now.

I feel like my parents don't want to spend any time with me.
Last weekend, I was going to go home and hang out with my mom. I told her that I had Sunday off the previous Tuesday, but she said they already had plans to go to the lake, so we couldn't hang out. I was really upset that they wouldn't change their plans to hang out with me, because they are always bitching that I never come home. It made me feel like they don't want to see me or hang out with me. It really hurt my feelings. But this weekend, I'm going to my parents' house and my mom and I are going to hang out on Saturday. So I feel a little better about that.

I am scared that David is going to leave me due to my POTS.
I still feel this way, but I'm trying really hard to be as normal as possible. I hope he can put up with me for as long as it takes to get over this. I'm finally feeling positive about the fact that I might get better, so I hope he can stick around long enough to see that.

I feel like my doctor isn't really listening to me.
I was very concerned about where to go next with my health, but then I talked to this girl Andrea that I met through a POTS forum on facebook, and she recommended her doctor to me. I have an appointment with her scheduled for this Friday, and I'm very excited and hopeful that she can help me. I just hope she listens to everything I have to say. But if she doesn't, I have somewhere else to turn as well. I talked to my primary physician yesterday and she said that if this doesn't work out, she knows of a great neurologist who might be able to help me.

I am totally unmotivated to look for a new job.
This is definitely still the case. I'm kind of worried, because I'm not making any money. But my mom wants to help me work on my resume this weekend, which is one of the things that has been holding me back from looking for a new job. So hopefully that will give me a little push in the right direction.

I feel like shit.
This is also still the case. But I have been learning that the more I move around during the day, and the less I lay around in bed, the better I feel. So I have been focusing on doing that, and it has seemed to help, at least for the last couple days. And now that I've realized I feel worse after I eat, I have been trying to eat smaller meals to keep me from feeling so crappy. It doesn't always work out that way, but at least I've been trying harder.

I am tired of being afraid of having a panic attack every five seconds.
I just have to keep reminding myself that many, many times I feel like I'm going to have a panic attack I don't. Plus it helps to know that I usually don't have panic attacks in public, so that is calming. And I am learning ways to cope with it, so that is also helpful.

I have realized that after I eat, my POTS gets worse... but I really really like to eat.
Like I said, I have just been trying to eat smaller meals, which seems to help. Hopefully it helps my weight too!

I wish I could meet people who are more like me.
I really wish I could meet other people who don't like to drink. I think I live in the wrong town for that. Everyone here wants to party all the time, and I just can't. So I really don't have anyone to hang out with. My friend Brie just moved back to Columbia though, and she isn't a big drinker anyway, so that is good. Plus she has a kid, so she can't really go out all the time either. That should help with my loneliness. I just wish people would realize that partying and drinking aren't the only things that can be fun. Maybe when I move away from a college town, that will change. Maybe I should quit being friends with newly-21-year-olds.

I am scared that I'm never going to be happy or healthy again.
This does scare me, a lot, but I was talking to my friend Kaitlin today whose roommate has POTS and she said that her roommate is starting to get better. Julie (the roommate) has had POTS for about two years, Kaitlin said, but she is starting to get better and hardly gets dizzy at all anymore. That gives me a lot of hope for my own health, except for the fact that she was diagnosed when she was a teenager (which leads to a better prognosis), and I didn't get sick until I was 22. I plan on asking the new doctor I'm seeing Friday what her honest opinion is of my prognosis. I hope it's positive, but more than that I hope she's just honest with me...

On another note, something I didn't mention in the post I started on June 1, I think I may have finally decided where to go next with my education. That sounds great, and I am very excited about it, but I'm still not 100% sure. When I was in high school, I was absolutely convinced I was going to be a lawyer, and then a judge. I started college as a political science major, but then I decided I didn't really like that. So I changed my major to biology, thinking I would work in a crime lab. By the time I graduated, I had absolutely no clue what I was going to do, but I knew I didn't want to work in a lab. I also know that I could NEVER go to medical school, because I just don't have the stomach for it. I love science. I really do. But lately people keep mentioning how good of a lawyer I would be, or how I should try out law school... and it has got me thinking in that direction again. So I looked into MU's law school. It looks like it might be pretty difficult to get into, but I seem to have a knack for taking tests, like the ACT, so I can't imagine the LSAT being much different. This is the first thing that has really interested me since I started thinking about my post-undergrad education. The only thing is that I couldn't get in until next August. Like 2012. So I started looking into grad school at MU to see what my options were, and I came across an HDFS and Law dual degree in Family Law, and that REALLY interests me. I would really like to speak with an adviser or something in the HDFS department, and ask some questions about what Family Law entails. I would like to learn about what I could do with that degree. Plus I would like to know if I could start taking HDFS classes before applying to law school to get a head start on the whole process. But the degree will take four years. If I don't start until August 2012, I won't graduate with my JD and MS until I am 28 years old. That scares me, for a few reasons. (1) I am going to miss science. I may not want to work in a lab, but I still love science, and I am going to miss learning about it when I'm getting a social science-type degree. (2) I wasn't very good at college. I am scared that four more years is going to really drive me nuts. (3) The JD program at MU is full-time day classes, so I still won't be able to get a big kid job, because I will have to be working nights. Which really saddens me. (4) If I don't graduate until I'm 28, I will be kind of old (in my personal opinion) to be starting a family. And I really want to do that. Not now, but I don't want to be doing it when I'm 28. But I also don't want to be going to law school and trying to raise a family at the same time. This is the scariest part of this whole thing. If I had graduated from college when I was 21, like I should have, and then went on to get a JD and MS, I would only be 26 when I graduated, if I took a year off, and that would be a much better time to start a family... But I don't really want to get a JD just to turn around and have to take a year off from work for pregnancy and baby-raising. I'm just so concerned about my future, something I've never really thought about until now... It's just scary. I just want to make the right decisions. I wish I had more time in my 20s...

I think I just need to see a career counselor. I am really leaning toward this Family Law idea, but if I find something I could do in the field of science that I am also interested in I might do that instead. I think I will make that a goal for this next week -- see a career counselor... I will let you know how that goes...

my thoughts don't make sense sometimes

I haven't been this depressed in a long time. Or maybe I'm not depressed. I feel more defeated than sad. Like I should just give up on trying because nothing I do is ever going to be good enough.

I can't get myself together. I have no motivation to do anything that I need to do. I have a to-do list. Some things stay on that list for a month before I finally force myself to do them. Not because they're hard. But because they require energy. Or thought. Or me to get up off the couch. I feel so bad about myself because I never get anything accomplished. It's a vicious cycle. The less I do, the worse I feel about myself, so the less motivated I am to get up and do anything.

Jessie is always gone. If she's not at work, she is out partying. I am unbelievably lonely a lot of the time. She and I used to spend many nights a week together, watching our shows or just hanging out and talking. And now she goes out literally every night. And I can't go, because just the thought of being around all those people in a bar or a house party makes my head spin. So I sit here alone, scared to say anything to her because I know it's not going to matter and it's just going to make things awkward between us. Why doesn't she want to hang out at home with me? Probably the same reason David doesn't -- because it's boring. I'm boring. I feel like life is passing me by because all I want to do is sit in my bed. Or on the couch. But mostly my bed.

I had so much more I was going to write. But my incredible anxiety is keeping me from having focused thoughts... So I guess I will have to write more later.

Day 29: 3 wishes

Where to start...

(1) First and foremost, I wish I didn't have POTS. Seriously, for an illness that's not life-threatening or majorly debilitating, it's really freaking irritating. I hate that I never feel GOOD. I have better days than others, but I never feel good. And it sucks.

(2) Second, I wish that I knew what I wanted to do with my life. I wish I could decide now how I want to spend the rest of my life. I know I COULD make that decision right now, but I want it to be the right one. I just want to be happy with my choice.

(3) Third, I wish that I could eat anything I wanted with no repercussions. No weight gain, no health issues.

Day 28: Something that stresses me out

Oh my. This one will be easy. Because there are tons of things that stress me out.

(1) Having POTS. Aside from the fact that anxiety-like symptoms are part of the syndrome, the fear that I will pass out or vomit in public due to this illness is sometimes overwhelming. Waiting in line can be difficult, because I'm always scared I will need to leave the situation but can't. Of course, aside from that first time at Cedar Point, I've never had to do that. But it still stresses me out, a lot.

(2) Worrying about hail on my new car. I have never worried so much about the weather before, and this storm season we're having is making it even more worrisome. It hailed on my car last weekend for about fifteen minutes, and I was stuck on the highway and couldn't do anything about it. I was hysterical, and I was SURE my car was ruined. It turned out that, as far as David and I can tell, there was no damage caused by the hail, but it was still scary.

(3) Money issues. I'm sure lots of people (if not most people) are stressed out about money. My stresses come from the fact that I really just want to be independent. I want to be able to pay for everything I need to and be self-sufficient. But making minimum wage and working twenty hours a week isn't cutting it. I just received a lot of money for graduation, but all of that will be going toward bills. I need to find a new job, but I'm very scared. Which leads to...

(4) My job. I hate my job. I hate wasting my time working for minimum wage for a man I despise. I would like to get a 9 to 5 job, maybe doing receptionist work or something, while I try to decide what I would like to do next (as far as deciding between grad school and a job...). But I'm scared... I'm afraid it's going to be hard. Or that my POTS will get worse and I will have to miss work and then I'll get fired. I'm just having trouble pulling the trigger because I don't want to leave my comfort zone when I'm not completely confident in my abilities because of my illness. It's a combination of laziness, comfort, and fear, I think.

It is nice to not have the added stress of school mixed in with all this, even though I do miss it. Hopefully within the next few months I will decide how I want to move forward, and then I can go back to school. Or something...

Day 27: original photo of my city

This one was kind of hard for me at first. I take lots of pictures, but most of them are indoors, and none of them really show what Columbia is actually like. So I had to borrow a picture from one of my friends, Monique. This picture is of the Magic Tree, this tree that is decorated with a ton of Christmas lights in December. There are supposedly lights on every branch of the tree!

I would have liked to post a picture of the columns on MU's campus, but oh well. This is pretty unique to Columbia, too!

Day 26: my dream wedding

This one will be easy. Because I haven't thought that much about it. I really want my wedding to be simple. I want to be so in love with the person I marry that my wedding won't matter. I watched wayyy too many love stories as a kid, and I really do believe in true love... not necessarily soul mates, but true love. So that's all I really want at my dream wedding. True love.

Day 25: Put my iPod on shuffle, first 10 songs

1. Chop Suey - System of a Down
2. Goodbye To You - Michelle Branch
3. Shake Ya Ass - Mystikal
4. Fancy - Reba McEntire
5. If You're Gone - Matchbox 20
6. The World's Greatest - R. Kelly
7. You Were Meant For Me - Jewel
8. U Don't Know My Name - Alicia Keys
9. Family Portrait - Pink
10. My Way - Usher

This is a terrrrrible example of what I like to listen to. I really only like the first song. Jeez, I really need to clean up my iPod...

Day 24: something I've learned

"Youth is wasted on the young." That is what I have learned. I wish I could go back to high school and have no responsibilities. More than that, I wish I had known how good I had it back then. But that's the nature of life. Young people are inexperienced, so they don't realize just how good they have it... Life's funny.

Day 23: favorite movies

Ok, 30 day challenge. You really dropped the ball here. I already answered this question.

Day 22: What's in my purse?

This should be therapeutic. I need to clean it out anyway! Let's see:

• bottle of Ibuprofen
• bandana (I have to wear it for work)
• checkbook
• 4 ink pens
• mechanical pencil
• wallet
• 3 chapsticks
• face powder
• Extra polar ice gum
• hair brush
• hand lotion
• sunglasses
• concealer
• piece of paper with last week's work schedule on it
• car keys
• non-mechanical pencil (it's glittery and pink, and I never use, but I love it)
• Bandana'a nametag
• mascara
• flashlight
• deodorant
• loyalty card to Tiger Express Carwash
• eye liner
• visor clip-on that says "Never drive faster than your guardian angel can fly"
• spare car key
• packet of Ibuprofen
• bottle of naproxen
• a dime
• 5 bobby pins
• prescription I never filled
• receipt for the car battery I bought for my old car
• receipt for David's mom's Christmas gift
• 3 ponytail holders
• 6 tampons
• two gum wrappers
• two Andes mint wrappers
• a lifesaver mint wrapper
• spare keys to David's car

Well that was fun. I realized that I'm prepared for kind of a lot. I guess that's good to know!

Day 21: Favorite picture of myself ALL TIME. Why?

I love this picture of myself, but I'm not really sure how to answer why. Maybe it's because I look so happy. Or maybe it's because it's a silly picture. I think most of it is that I think my hair looks good in it. And you can't see my double chin. Plus my boobs look big.

I had a hard time choosing between this picture and two other pictures from that night. I must have been overly photogenic that night, because usually not very many good pictures turn out of me during one event...

Day 20: Nicknames

When I was in junior high and high school, I had lots of nicknames, and none of them were very nice... My 8th grade science teacher started calling me Skara, and I legit STILL get called that from time to time. I was also called Shwhitey (because I'm loud, and pale... it started out as "shh, Whitey", but I guess that was too long...), and then my junior year this boy Josh started calling me Seabiscuit and literally everyone started calling me that. He said he gave me that nickname because my teeth jut out in the front, like a horse's... High school's fun...

Once I got out of high school, all those nicknames (minus Skara...) have pretty much gone away, although Jenn's husband Corey calls me Whitey. He came up with that one his own though.

The one nickname I've had my whole life is Nick. My middle name is Nicole, and my whole family calls me Nick. I still think a little part of it is because my dad wanted a boy and if I were a boy my name would have been Nick... but that's neither here nor there. My whole family calls me that, and I always respond when I hear the word Nick at my parents'. When I was dating a guy named Nick, things got sort of confusing at my parents' house...

Day 19: something I miss

I miss a lot of things. I'm a pretty nostalgic person, and I think a lot about how things used to be. But the thing I miss the most is my life before I had POTS.

When I first got POTS, it made my life a living nightmare. I didn't know what was wrong with me, and my family and friends thought I was bat-shit crazy because no one could see my symptoms. In January, when I was diagnosed, I thought I finally had the answer -- I thought I was going to start taking this medicine and I would be fine. And eventually, by about March, I was feeling lots better.

But this past few weeks have been rough, culminating with tonight, where I almost passed out at work. I feel like I'm not even on medication. It feels just like it did when I first started having symptoms. I don't know if it's the heat, or stress from finals/birthday/graduation, or what, but it's killing me. And my mom told me tonight that I just need to learn how to control it. Well if I knew how to do that, I obviously would already be doing it. No one in my life understands. My family thinks I'm crazy -- yesterday, for the 30 day challenge I'm doing on facebook, I posted a picture of POTS for something that has impacted my life recently... and my grandma commented that there are people with worse things than that. No one has ANY FUCKING CLUE what it's like to be inside my body, miserable all the time. In pain, dizzy, completely confused all the time. It makes my life a living nightmare, and, contrary to popular belief, I think I'm being pretty DAMN positive about having a chronic, incurable, possibly lifelong disease... But no one agrees.

And then there are the people who tell me they think it's all in my head. I think my mom thinks that. I KNOW she thinks that about the anxiety I've been having for the last ten years. She tells me to just "stop". Like I hadn't thought of that brilliant idea yet. Like I could do that if I wanted to... Other people think that too, and it's really upsetting because it ISN'T all in my head. But to prove that, I'd have to faint in public, or drink alcohol and then have a heart attack or something. NO ONE BELIEVES ME, and it is SO FUCKING FRUSTRATING.

... But I've strayed from the point. I miss my life before POTS. I miss being able to go out until 3 in the morning and not have to worry about getting enough sleep so I'm not sick the next day. I miss being able to have a drink with my friends. I miss being invited out. I miss spontaneity. I miss not taking 8000 pills a day, even though they don't make me feel that much better. I miss being happy...

Day 18: favorite place to eat

Sadly, one of my favorite places to eat is Chili's. I know, I know... I worked there for over a year and ate there at the very least once a week... I still eat there all the time even though I don't work there anymore. It is pathetic, really.

Another place I love is Red Lobster. I love seafood, and when I get to eat there it makes me so happy... mmm, Cheddar Bay biscuits...

I also really love El Maguey. Best. Queso. Ever. I never liked Mexican food until about a year and a half ago when Jessie forced me to go there. Then I decided I love it. A lot.

Obviously, I'm really big on chain restaurants. I don't venture much past them. I would like to, but I'm scared of the unknown, so I don't. I'm a baby.

Day 17: Something you're looking forward to

There are lots of things I am looking forward to this month. I am looking forward to my birthday on the 10th, graduation weekend the 14th through 16th, and my graduation party on the 21st. I am just really excited to be done stressing out about school. I'm also looking forward to having more free time this summer to just hang out.

Day 16: Dream house

This one is kind of hard. I am not a very creative person, so designing my own house is going to be kind of out of the question. So I will just list some of the features I would like my dream house to have.

I would really like to have a two story house. We never had that as a kid, and while in college I lived in a duplex with two stories and I like that. Sam likes stairs.

I would also probably want a patio or porch on the second story. So no burglars can come in, but I could sit out there and feel safe. (I mean, I guess if they had a ladder they could get in, but most aren't that crafty... right??)

I would want my house located in the suburbs I think. I lived in a fairly rural area until I moved to Columbia, and once I moved here I realized how much I like living close to the places I want to go. Like work. When I was 16 I had to drive 30 minutes one way to work, and I basically spent all the money I made on gas. So I would like to live in the suburbs, but not in a city.

A garage is a must. And lots of storage space. And a basement for when there are tornadoes. And a big kitchen. And an appropriate amount of bathrooms for the number of people who live there.

I obviously don't care much about these things. I'm not big on flashy or elaborate things, and my dream house will be no different, I'm sure... Or, I'm so poor now that any nice house that's not in a ghetto will do and I can't think beyond that...