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 The doctor I'm seeing is an internist, and the appointment was originally made just to set up a doctor here in town as a GP, but I have felt so awful this week that I'm really glad I have the appointment.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...