Body Tremors

This is the video that I said that I would post. This is of me, obviously, in the ER in LA right after I got my meds and started to feel better. But I was still having bad body tremors. It is mostly in my left arm.
https://youtu.be/GTIwU5EimHE

What I make myself do

As many of you know, I am a very busy person. I am a full-time college student, I work and I run and am a part of organizations on campus. There are many times when I have had to make myself do things, just to keep up appearances or to not get behind. I have a friend on campus who I have grown very close with this year, who also has POTS. Meeting her has helped the both of us. We talk about symptoms, we make POTS jokes that only us understand, we text each other when we are having a flare-up, we give each other advice, and help one another through the bad days. We also hang out on our good days, when we can. When I got back from my LA trip, I told her all about my ER visit. Then we joked about how there are things that we just make yourself do. The best part and worst part of our illness is that people can't see it. It is invisible. This means we can get away with making yourself do things when we don't feel good because we don't look sick. We can fake it, until we make it. So we just listed a long list of things that we have to physical and mentally make ourselves do, and most of them are everyday tasks. Unless, I can't like physically get myself out of bed or have a really bad pre-syncope episode.

Here is what we came up with, we make ourselves...

-go to class

-do laundry or it never gets done

-do dishes or it never gets done

-go to work

-go to meetings

-pretty much, go and do anything

-sometimes homework, if I don't want to deal with explaining to a prof. that I was unwell or in the ER

-take the stairs, to strengthen legs

-walking in general...everyday...my legs are so weak and cramped, I trip a lot

-going to appointments, I hate going to any form of appointment (feeling good or not)

-hanging out with friends, sometimes I do it to change my mood and the great ones make me feel better

-smiling, everyone with an invisible illness has had to force a smile more than once

-acting like I care, I don't know if that is just a part of my personality or if I don't actually care

All-in-all we make ourselves, I make myself do my "normal routine" my everyday routine. Why? It prevents me not from only going crazy but it gives me hope that I may get better and have a happy future. Especially, if I keep working hard and try not to let this illness get me down. It is hard, it is a crazy roller coaster ride and I am glad I have people that are there for me in my life. If I didn't then I probably wouldn't be here.

Apparently, I am a better actor then I think...? Who really knows? I just know that when I need to act a certain way or need to do something, I do it. That is just the way I am. Only if it is truly important to me. Otherwise, I am just honest and tell people I don't feel good. But the reason I do "act" is because I have more bad days than good. I try to stay and act positive and luckily, most times I am.

Side effects

There are many different types of side effects; side effects of medication and side effects of having an illness. I am now realizing that I haven't talked about the side effects that I get with my medications. Some of them are harder to notice but others are and can sometimes be unbearable. It depends on the day, and how many I had to take of my "take as needed" drug. That drug is Midodrine, it is a powerful one that instantly raises my blood pressure to lower my heart rate. It is very helpful when I have a flare-up and when I know I am going to be walking around or on my feet for awhile. The struggles of walking around my college campus are so real and this drug helps. One thing about this med that I don't like, is that if I take it I can't lay down or stay sitting for a long period of time otherwise, it will raise my blood pressure up to much and that is no good. So that means I can't take it before bed if I am feeling bad. If that happens then I usually just tough it out and try to fall asleep. In other words, I tell myself I am fine. I have a few side effects with this drug, since it is an amphetamine/stimulant so, when I take it I have tingling/itchy scalp. I also get even more hypersensitive to the cold/wind. Sometimes when it wears off, my blood pressure has obviously dropped and so I go into a flare-up faster, this especially happens if I don't drink a lot of water. Those days are the worst but it doesn't last all day. It is a sort of thing that comes and goes. The other med I take is called Fludocortisone it is a salt-retaining steroid that people with Addison's disease take and so do a lot of POTS patients take for obvious reasons, to help raise blood pressure. I take this pill every morning, I also have to make sure I drink a lot of water with this one. I get stiffness mainly at night and in the mornings when I wake up with this drug. That is the only side effect that I have actually noticed with this med. the side effects to having an illness are going through the five/seven stages of grief of loosing your old life or the life you used to have. It is a process, I know that I am not done going through them all. Some weeks as many of my friends and family know, that I end up going backwards or all across the map. It is a crazy part of life that many people end up going through, unfortunately. 

Asshole ER Doc.

I have heard some horror stories about POTS patients that have bad experiences with doctors and nurses either not believeing that POTS exists or they don't give them good treatment or make them wait forever. I didn't think the world could be that cruel. I didn't think doctors and nurses would not believe in an illness or even treat it. I didn't think that a doctor would interrogate a patient about the meds that they take. I would have never thought any of this or believe the horror stories that I have read on various blogs and Facebook support groups. Unfortunately, it is true. I have had first hand experience and it was aweful. An ER, let alone a hospital, is a place where a person should be taken care of and feel safe. But instead when I was in a California ER I was interrogated by a doctor. He suggested that I go off my meds for a year, just to see what happens. Well, guess what?! I have gone off my meds for two weeks and felt aweful and could barley function. He also questioned the meds I was on and then asked me where I was diagnosed. I was diagnosed by a Cardiologist at the U of MN! A great hospital. Really?! Like what the fuck? It is pretty fucked up that you don't believe a patient who is shaking (body tremors) right in front of you. You CAN'T see all illnesses. You can't see a heart attack or a stroke or pain. You would think that an ER doctor would know this. He sure didn't act like it. It was so fucked up that I had to DEFEND not only my illness but why I was in the ER. Did he think I wanted to be there? Seriously? Not only did I wait about three hours just to see this asshole doctor but then I had to defend why I almost passed out while I was waiting to see him? I wish I could just give them my POTS so they would know what it is like to live with this bullshit invisible illness. And that is exactly what I thought while I was in the ER. I even understand as a human being that it can be hard to believe someone when they don't feel good but if they are shaking and can't walk and look pale or flushed. Like really?  Do I even need to say more?

"Sick girl"

It is hard to be honest to someone, sometimes, about how I am feeling physically and emotionally about my health and the situations it has put me in. I don't want to be that "girl," the over-dramatic "sick girl." Yeah, I can be somewhat over-dramatic sometimes when I am overly stressed and in a flare-up. I know that my mom and some friends who have seen me in my worst of flare-ups know how I can be. It is when I am at my worst. It sucks. It pisses me off. I get angry, then I cry. I should be crying more then I actally do. But I hold it in, I have to because I don't like crying in public. You get it...some days I feel like the "sick girl." That is why I don't like talking about it some days. Because I don't want to seem like that or seem like I am weak. This is because I actually feel weak. I feel like I can't talk to anyone because no one understands me. Some days, most days it is especially hard for me because all I want to talk about is how I am feeling. But that would be annoying for everyone. I do want to just scream and break out crying but I can't. I can't because then I am weak or I am in public. I really don't think that would make me weak but in the moment it feels like a weak decision. If I do talk to people when ever I feel like I need to it won't only be annoying but the feeling of being the "sick girl" will come off even more than it already has. I don't want that at all. So I will just keep quiet, that is one of the biggest lessons that I have learned from this illness; to just keep quiet. If I am quiet it is because I am just worried and thinking about how much I just don't feel well. I am trying to distract myself but sometimes those distractions don't work. Sometimes those distractions can be destructive. It is hard to find what works best. Sometimes it fails and it sets me back. It doesn't help. Then I just move onto something else.  There is definitely an unfillable void in my life right now. I think it has been there for awhile but I have just been avoiding the reality of my life.

 That is why I blog. I blog because it helps me not only feel better but I can get it all out. I can unload. It doesn't matter if someone is reading it or not. It do it for me and no one else but me. Well, at least posts like this. The updates and ER ones are for my family and friends. The blogging has been helping me fill parts of the void. It doesn't last long. But it is a start and a short-term fix and solution right now.

Biggest fear

When I have a bad dream/nightmare, it isn't the typical kind of nightmare. It isn't about zombies or spiders or demons. Well, sometimes demons. But my point is my nightmares consist of me ending up in a wheelchair or with a walker. This because I know that about 25% of POTS patients end up in that position. I hear and read so many horror stories about other POTies expericenes. I am terrified that I am going to end up like that. I know I would be fine and will be fine. I know I would be able to handle it, like I have been able to "handle" every other thing. But it still scares the crap out of me. Especially, when I have a bad day/flare-up. Like today, when my whole body, mostly my legs feel weak. It is crazy scary. Not only do I have a fear of it but I have actual nightmares of me in a wheelchair. It is aweful. I wake up sobbing. I don't know how else to describe it. It is realistic things like that, that freak me out the most. I think about it all the time, especially on my bad days. 

ER Visit; LA Style

I was in LA for the ACP journalism convention from Thursday 2/18-Sunday 2/21. Overall, it was a great trip! I made great friends, bonded with some great co-workers and learned some new skills to bring back to the office and for my future in writing. I also happened to land myself in an ER. It all started early Friday morning when I was trying to go to sleep. Not only did I notice that it felt like my heart was beating out of my chest but I felt like shit. I was nauseous, dizzy, had bad leg and feet cramps, and was having body tremors. Since I didn't want to wake people, I decided to text my mom (since she works overnights). I took my meds to help my nervous system calm down. So I texted my mom until the meds kicked in and of course took a bath. Baths help my body calm down but I can't take too hot of baths because that will make my body hate itself even more (dehydration). Did I mention that my face was really flushed? Well, it was and it was bad. So, the bath and meds helped a little bit. I still had a high heart rate in the 130's. It all finally calmed down and I was able to get a couple hours of sleep. I woke up feeling terrible. I had a headache, small unnoticeable tremors, and fast heart rate. I decided to try to go to a two sessions and eat some breakfast because I thought it would make me feel better. It did. I felt pretty good the rest of the day until supper time. We were at the Universal City Walkway, which was a couple blocks away from our hotel. I was having a blast and even made sure to take my meds before going there. I didn't want to take any chances on having a flare-up during that time because I wanted to enjoy my time in LA, with all of the great people I was with. So, we explored the City Walkway, it was so beautiful and colorful. There were lights shining everywhere. I had thought to myself why we hadn't gone there sooner. But it was also only the second night we were there. When we finally picked a place to eat, that is when I started to not feel good. I got so nauseous and could feel my body just rejecting itself, I was starting to shake but not enough for others to notice. I tried to hold out and just sat there in silence wondering if my symptoms would ease up or get worse. They continued to get worse. I thought to myself if I see any food that I would probably puke. That is when I decided to go to the bathroom; I tried to breath through it, calm my sympathetic nervous system down...it didn't work. I called my mom, she didn't answer. Then my friend came into the bathroom asking if I was ok. I am like, "not really." I tried my hardest to explain to to her what was going on. Then my mom called me back and I told her what was happening and I asked her if I should go to the ER just to feel better, so I don't have to go through another night of hell. And when I usually go into the ER after/during a bad flare-up it helps me feel better and almost symptom free for the next couple of days, so I figured that since I wasn't going home anytime soon that I would just go in and my mom agreed. I felt good enough to walk the couple blocks back to the hotel where we would meet up with the faculty advisor/professor that went on the trip with us. Although, my friend did help me walk as I put my arm around her and I just vented about my life with POTS. By the time we got to the hotel my symptoms were obviously worse and I was dizzy. We got a taxi and went to an ER. I don't even know where it was or the name of it other than it was called Saint-something. I was so brain fogged, I had a hard time filling out the information when I got there. We had a long wait, I don't even know how long, my sense of time was distorted in so many ways. The two hour time difference, and just being completely out of it. I honestly thought I was going to pass out because the lady took forever just to get me 'checked-in' and I felt like I was standing forever. I think it took a couple hours of waiting, doing an EKG, and finally getting a wheelchair before I actually got my own room to get meds and IV saline solution. I needed a wheelchair because I was not only dizzy and lightheaded but my feet and legs were so cramped, weak, swollen and blood was pooling in my feet. I got my IV saline solution, some anti-nausea meds and they gave me morphine for the pain. Which in all honesty, I was grateful for but thought it was odd. I am glad that I got it because my pain got so much better. I was having bad body tremors throughout the entire time I was there but they were not always noticeable. When they were noticeable I had my friend record them just to show people what they look like. Then after about an hour of getting meds and feeling better, finally. I was discharged and just felt exhausted and tired. I was still a little shaky but that was ok. I just wanted to get some sleep. I got back to the hotel and took a bath to relax a little bit more before I went to bed. Then, I went to bed and slept so well...it was kind of amazing. Then the next day I took like two cat naps and felt like 100% that night. And we all ended up going out and having a blast!!

Since this post is so long, I will write two separate posts going into the detail of the asshole ER doctor that I had and how thankful I am for my friend Rikka and the faculty/professor David for everything that they did for me.