Random nutritional information

I found these recently online, they list the amount of different electrolytes in various foods. I have already weeded out the ones that are lower in each nutrient, so this is an abridged version. All amounts are estimates and in mgs, but this gives you a rough guideline. 

Sodium:

Cocoa powder (950) - hot cocoa anyone?

Butter (840)

Olives in brine (1800)

Soups (varies, usually very high if canned)

Sauces BBQ (815)

Soy sauce (very high)

Dressings (varies but usually high)

Vegemite (3100mg)

Sweet pickles (1700)

Dill pickles (high)

Canned tuna (can be high or low, read package)

Ketchup and mustard (high, but you use small amounts)

Potassium:

Cocoa powder (1500)

Dried apricots (1880)

Banana (350)

Raisins (860)

All nuts (varies by variety, also usually has sodium so bonus food!)

Ginger (910)

Sesame seeds (725)

Peanut butter (700)

Vegemite (2500)

Chocolate (420)

Liquorice (220)

Parsley (1080)

Calcium:

Cheese (find ones with added calcium)

Sesame seeds (1160)

As usual, please always ask your doctor before changing your diet!

What a turn around...

Thinking of where I was last week and where I am today actually brings tears to my eyes. This time last week I was riding in an ambulance to the ER, shaking so much that it hurt, sweating but freezing, and completely terrified because we didn't know why. But let me back up a bit. If you've read my blog, you know that I was in the hospital two weeks ago for what turned out to be a very rare type of heart attack. Prinzmetal's Angina is what its called, we think the Midodrine I take for my POTS may have caused it, but we aren't sure. They performed a cardiac catheterization to see if there was a blockage or obvious damage to my heart (there wasn't), put me on Norvasc to prevent the muscle spasms, and sent me home. That was fine for a few days, but with my low bp, I couldn't tolerate the Norvasc, so we stopped it and the atenolol to let my bp rise again.
Throughout the whole hospital ordeal I kept telling myself that I had to get through it and get better because the Philadelphia Flower Show was going to be gone by the end of the week and I needed to go. It no doubt sounds silly, but it is a family tradition and is something I look forward to all year. I also find that keeping a goal in mind really helps me, so why not? Anyway, I made it to the show! I was so excited when I was there, I no doubt looked like an idiot I was so giddy, but who cares? I wasn't up to standing or walking through the show, so I did what I try to avoid in other situations, I was in a  wheelchair for the show. It turns out that being in a chair wasn't as bad as I thought, I actually got a unique angle to see the show from and the arm of the chair helped me to take more steady pictures (bonus!). That day was amazing.
That night, I passed out in the foyer and hit my head and twisted my cath site on the way down. (It would be great to stop doing that...) The day after the flower show, as I had expected I would, I crashed with POTS. I pretty much spent the whole day in bed sleeping. I was just exhausted. That night I had some really strong hot flashes and woke up with my sheets soaked from sweat in the morning. It was worse than normal, but I just figured I had a bad POTS night as a result of going to the show. For the next two nights the hot flashes and cold sweats got worse and closer together until I was actually shivering from being cold but sweating so much I had to keep changing my clothes to keep dry. My temp was averaging in the 97s which was weird for me, and I also had a headache that was getting worse and worse, but as usual, I figured it was POTS or a concussion from my fall.
It all finally got bad enough that I went to my family doctor. As usual, when the doctor saw me, I was doing well, my vitals and temp were normal (don't you hate how that happens?) She said that she suspected that it was just my POTS, but wanted to check my thyroid just to be sure. When I went across the office to get my blood test, a hot flash was just coming on. I warned the blood test lady that I pass out, so she had me lie down in a room for the stick just in case. First problem was that she couldn't find a vein anywhere, not in my arm, my hand, my wrist. Apparently the vampires got to me first because once she got any blood, barely any would come out. To make her life a little harder, the hot flash I had been having had turned to cold sweats and now I was shivering. Eventually she got enough out of me, just in time for my shivering to turn into shaking, like really shaking. I asked her to get my mom and while she left she had a nearby doctor come in to make sure I didn't fall off the table. Once the doctor saw how much I was shaking and sweating she started taking my vitals again. My bp was 90/50, my hr was in the 150s, my blood ox was going between 80-90. Clearly something was wrong. Seconds later my doctor, the other doctor and a wave of nurses were all around me, it was kind of scary. By this point I was freaking out from how much I was shaking and started to hyperventilate. The doctor told someone to call an ambulance, that person was a nurse, who glanced in the room to see the reason for the call, saw the shaking, and told the dispatcher I was having a seizure (which I wasn't). Now skip ahead 24 hours in the hospital and we learned that I had hypothyroidism and that was causing all the shaking, sweating, etc. Upon release, I was given a prescription for Synthyroid, a drug that replaces the hormones my thyroid doesn't make properly. That was a week ago.

Today I woke up, took my Synthyroid, did some laundry, walked to the mailbox, let the dogs out, made pasta with red gravy, and did other things that were easy, but had been difficult for me to do for the last few months. While there are side effects and I still have POTS, I haven't felt this well in months! It is amazing the turnaround I've seen in just a week! I feel an incredible sense of hope now that I didn't always feel int he past. Honestly I was hesitant to post this considering the content, this is pretty personal stuff I'm writing about. But I don't think people will understand what I mean when I say I'm hopeful unless the know where I was coming from. I want to share my story so that other people know that things can get better. I know its just a small hurdle in life with POTS, but its a big change for me in my quality of living, and for that I'm very grateful.

The "Go Bag" for POTSies

I've been having extremely low blood pressure, low heart rate and bad dizziness since Saturday night. Talked to the doctor and he wants me to stop my Atenolol and Norvasc and stay in bed until Thursday when I can see him. This sucks! I am so sick of being in beds and not out. I really would love to see my friends, but I honestly don't even feel up to getting on WoW or watching movies. While I hate that I'm stuck in bed, the alternative is going back to the hospital. We're hoping that being in bed will prevent that.
Just in case, we're going to pack a bag just in case I need to go in. When I went in last week I hadn't felt well enough to clean my room or put away laundry in a while, so it was hard for my Mom and sister to find the things I needed in the hospital. One thing I've learned about being in the hospital is that some little things can make a big difference.
I like to have shorts or pj bottoms (who wants their butts hanging out of gowns? Since me going to the hospital usually means getting heart monitors on, I like to bring a sports bra or tank top to wear under the gown (if allowed) since the wires poke out of the pocket in the front and expose you (but make it one that you're okay with losing since they will cut it off in an emergency). Slippers and warm socks are both good to add as well since you will probably be getting in and out of bed a lot for the potty. It sounds silly, but I like to bring a cute hair bow or flower or something, it makes me and the nurses smile which is always good. Hand sanitizer is good too since most POTSies in the hospital aren't able to get out of bed without help, so hand washing is not as easy to do.
My iPhone and charger are a must! Computers are big, bulky and more likely to get stolen in my opinion, and an iPhone can do everything a computer can. I make sure to always have a few movies, games, photos, and music always on my phone just in case. If you know you'll have a private room, a few small bottles of nail polish can keep you busy for a little bit, but I love painting my nails so maybe thats just me. I like to have coloring books in the hospital because its something to do that is quiet and mindless. When I'm not feeling well, reading, watching tv, and other things like that are too mind intensive and actually can tire me out. I also keep a few printed photos in my purse, when in the hospital, I stick them on the tv and they make me feel a little more at home.
Another thing that is always good to keep on you is a "med sheet". A med sheet consists of a list of conditions, allergies, meds (including doses and schedule), doctors (with numbers), emergency contacts, and any other info that is important if you are unconscious and need medical assistance. If you wear a medic alert charm then emergency responders will look for a sheet like this if you're unable to speak.

Back in the backless gown...

Hey guys and gals,

Keep smiling POTSies!

I'm back in the hospital. I woke up with chest pain that was working its way down my left arm on Saturday morning. After trying to go back to sleep, it was clear that the pain was too bad so I called my cardiologist. I was told to go to the ER asap, that it sounded like a heart attack. We piled into the car and got to the ER within 45 minutes. Once there, they took me straight back and gave me aspirin, nitroglycerin, and a pain pill. The pain went away, which was good, but my blood tests kept coming back with my cardiac enzymes getting higher each test, so they admitted me. The initial thought was that I had a heart attack, so they scheduled me for a cardiac catheterization, but I couldn't have it until Monday when the lab was open again. They thought it was too risky to have me go home, so I've been in the cardiac wing since Saturday. I had the cath today. While I was very nervous, it went very smoothly and I'm doing well now. They basically put a big iv into my leg and worked it up to my heart. Then they injected dye into the arteries to look at how my heart was working and to look for blockages (I didn't have any) or damage (none showed). When I came to, the doctor said that I had a "clean cath" and it wasn't a true heart attack, that something else was causing the enzymes to be elevated. One possibility is that I have arterial spasms that clamp my veins and cause it to look and feel like a heart attack, but isn't a true one. Another possibility is that I was having damage to my heart from tachycardia and/or bradycardia. They started me on Norvasc tonight in hopes that it will fix both possibilities. I'm hopefully going to be sent home tomorrow. I can't lift anything more than ten pounds for a week, need help walking around, and need to look out for the typical post procedure risks like bleeding and infection, but the doctor says I should be able to go to the Philadelphia Flower Show on Saturday or Sunday, so for now that is my goal, even if I'm in a wheelchair while I'm there. I find that having a goal in mind really helps to get through the rough patches. Keep strong, keep hope, be brave, get through!
- Phoenix

Update: They think I am having vasospasms for some reason which probably caused hypoxia to my heart. It basically acts and feels like a heart attack. Its called Prinzmetal's Angina. They took me off the Midodrine, added the Norcasc, and we're going to see how that works for now.

You can't be a phoenix without the ashes

I never thought I'd be here. I never thought that at age twenty-six I'd be sitting in my room afraid to go down the stairs because I might pass out. I never thought I'd be afraid of falling in the shower, because the hot water and raising my arms to wash my hair make me dizzy. I never thought I'd be afraid to take my dogs out because if I faint, I may lose their leashes and they might get lost. I never thought I'd drink ensures to make sure I get enough nutrients everyday because I'm too nauseous for real food. I never thought I'd be worried about my hair falling out in chunks. I never thought I'd go from being the over involved overachiever I was, to spending all day everyday in my bed at home. I never thought that I'd be the girl who sees her doctors more often than her friends. And I never thought I'd be the girl who is stuck in a body that is holding her back from doing the things she loves. I never thought I would be here, but I am.
Accepting life's limitations was never something I was comfortable with. I've always been a vibrant girl with the gumption to do what I set my mind to. That is why now that POTS is holding me back, I'm at a loss. I am doing everything the doctors are telling me to do. I drink gallons of gatorade, I keep my weight up (higher than I'd like), I eat tons of salt, I take dozens of prescribed pills, I am starting a physical therapy program, but while these all help a bit, none make me better. Nothing makes me better. I seem to have met that inevitable thing in life that I can't beat. Something was bound to stop me and prove that everyone has limitations, even me.
Now I know that sounds all "oh woe is me" and downtrodden. Its really not. Its not meant to. Its not like I'm giving up, I am just in uncharted territory here. I'm a lot like my Dad. I like to fix things. I see a problem, I fix it. If I can't fix it, I find someone who can. If no one can, it bothers me until I find something to at least make it better. With POTS, there is no fix. No cure. There are crappy treatments that make you feel worse at times better at others, but no real fix. We've established that my present status quo is probably as good as its going to get for a while. At least until I see Dr. Grubb in Toledo (the leading POTS researcher and doctor). He's the next step of my plan, to see if I can find someone who can fix it. Its just frustrating that we're going to have to wait a year to see a doctor when your life is on hold until you get to see him.I just never thought I'd be here, waiting by the phone for a call from a doctor in hopes that he can give me my life back.
It kind of lights a fire up under you. I feel this surge of desire just wanting to fix things, but have no way to do that. I wish I could fix it; fix POTS for everyone. Make it something that is in the history books as something people once had to deal with before we found the cure. Wouldn't that be cool. ;o)
I think its funny when people think I'm feeling sorry for myself, although in my poor writing, who wouldn't? I guess I don't effectively convey my feelings to print. I don't feel sorry for myself. I am proud that I am a strong enough person to get through this. I am very aware of the struggles I'm going through because of POTS, and that makes me even more adamant that I want to get better. While POTS is inconvenient and uncomfortable, its not a life sentence. It could always be worse. Its not cancer, its not AIDS, its not going to kill me. Its something that will test me, test my strength and will make me stronger in the end. I know that on the other end of this, when I'm better, I will truly appreciate and be grateful for every step I take. I fought for each one. You can't be a phoenix rising without ashes...

On days like today... Coloring is awesome!

Facebook statuses this week... gotta laugh at the bad stuff...


Me: The floor at Costco is very hard and dirty... I know this now from first hand experience... And have the headache to prove it.
Me: (two hours later) And I just passed out again. Thats 6x in 9 days! Whoo!


Me: In the hospital again. If I knew the nurse would be this cute I would've shaved my legs... Maybe brushed my hair... Taken a shower...
Friend: Just wait till the cute nurse comes back to do the EKG and then you'll really cry!
Me: Nope, a girl nurse did the EKG... That reminds me, now I need to go search for all this sticky pads all over me...


Me: Five hours later... And yes. I have a concussion.


So I spent the day in the ER waiting to be told that I have a concussion from my recent POTS episodes. These made me smile today. 

I know it sounds childish, but coloring is awesome!

I had forgotten...

I recently went to a friend's goodbye party at a local bar. I hadn't been sure I would be able to make it considering how bad I've been feeling, but I lucked out with a good day. I lucked out again by having friends who could drive me both ways so I didn't need to worry about getting too tired to drive or getting stranded if my POTS acted up. So I jumped at the rare chance to get out, to get away from it all. Get away from it all sounds strange considering the fact that I can't and therefore don't do anything, but in a backwards way, thats what I need to get away from.

Maybe its that I am scared that if I go out I'll pass out; if I pass out, will I hurt myself on my way down or will I embarrass myself or friends. Maybe I'm nervous about how people I know will react to me not being how I used to be; if I act or look like I don't feel like my bubbly self. Maybe I've just become complacent with being in bed all day and don't have the energy to fight anymore. Maybe its because I don't have many friends and the ones I have are busy having lives. Maybe its because I'm getting to the point where I can't drive by myself anymore and live too far from my friends to go see them. Maybe its a combination of all of those factors. Whatever the reason, I haven't been leaving the house and I wish I could. I've been going to dinner with my family, running to the grocery or doctors, but nothing really fun. 

So I went to dinner before the party with two friends, we seriously were laughing most of the time! It was so much fun to just sit and chat with friends... in person. On the drive to the bar we were singing and dancing in our seats to silly dance songs like "hit me baby one more time" and "single ladies", it was fun. It was me being me. I've missed that. Once we got to the bar I had a second when I got out of the car that I thought I might pass out. I was so nervous that I'd end up waking up on the ground in the freezing cold parking lot with friends all standing around me freaking out, or worse, an ambulance. As I tried to fake that I was okay, the feeling passed. Thank God!
Once we got inside the bar and found our group of friends and (former) co-workers, I found a perch on a bar chair near some friends. We chatted for a while, which was great. I sipped shirley temples (my favorite non-alcoholic drink!) and was really enjoying myself. Many of the people there I had not seen in months, these were people I saw at work almost everyday. Its funny how you learn who your friends are when you're sick. Many people there were asking me if the doctors ever got a diagnosis; I was diagnosed in 2010. I don't think I've explained POTS that many times in my entire life. It seemed strange to be talking about my sickness in a bar, but I don't have anything else going on in my life. What do you say to someone who asks "so how have you been doing?" when all you've done is spend time in bed and do chores at home? Once everyone was up to speed, it was as if no time had passed. We were chatting, laughing, cracking jokes, and having a great time. I actually didn't feel bad for about an hour! It was great! Such a relief to just be me and be able to hang out with friends. I've missed that. I've missed going to bars with friends like I did at school. I've missed getting dressed up to go out and look nice. I've missed having guys looks at me like I'm pretty instead of having them look at me like I'm sick. I've missed being there for the jokes instead of hearing them after the fact. I've missed just being in the moment.
I had forgotten.


Ps: the post "the elevator speech" is related to this post. I just took it out because it is worthy of its own subject and post...

Brain fog and POTS

Imagine yourself with POTS.
Now hold a conversation.

One thing that I don't think people understand about POTS. I may seem tired and flighty lately, but thats because I am dealing with way more things than it looks like. At any given point in time, I may have chest pains, a headache and feel like I am having a heart attack. A few seconds later my blood pressure may drop and I feel like I'm going to pass out. The slightest things like bending over to pick something up or getting out of a seat can mean I go from feeling okay to feeling like my body is out of control. It is incredibly distracting and upsetting to feel you heart racing and to have it hurt for no reason. Little by little I've become deconditioned and now I can barely make it up the stairs most nights because my heart rate jumps so dramatically.

"Its an invisible disease...
Until you're passed out on the floor."

With POTS, when you're having a bad day you can get what is called brain fog. In addition to all the other distractions that go along with it, the lack of blood getting to our brains (the same lack that eventually causes out passing out) causes a kind of cloudy and confused state of mind. Everyone experiences it slightly different, but from my conversations with other POTS patients, we all kind of get fuzzy and have memory problems. Add all that to the fact that my hair is falling out, my toes keep getting Raynaud's, and my Midodrine induced goosebumps and any attention I have left tends to go straight to basic daily functions. Its important for people who are supporting or around POTS patients to understand this. No, we aren't ignoring you, no we aren't being flighty or ditzy. We're dealing with an incredible amount of physical  stimuli and our brains sometimes just aren't able to keep up with that and a conversation. Patience and understanding with POTSies is very appreciated. Be well POTSies!

What gives us strength

This month has been both amazing and really tough. I drove with my family to New Orleans for a funeral and spent two weeks with family there. While it is always hard to have someone we love leave this earth, my Gramma hasn't really been "all there" since Katrina. For the last few months, a good day was one that she opened her eyes. To us, while we were sad that she died, it was a blessing for her suffering to be over and for her to finally be at peace.
While I was out of town I had some great times with family. We enjoyed food, we played with the kids, we saw the sites. It was great to be in the city I call home again. It was great to be with family again.

The POTS Elevator Speech

I've found having a 60 second "elevator speech" about POTS can come in very helpful. I start by asking how much people know about the nervous system. Rarely does anyone know what it does other than that it involves nerves, but in the rare case that you're talking to a doctor you can skip a few steps and that way you don't sound like you're talking down to someone who knows about it already. Then I give a brief explanation of what the nervous system does focusing on the autonomic side. "Ok, so the nervous system basically controls everything your body does, the autonomic nervous system controls everything you don't think about. Thats what's broken with me, I have to think about all those things and control them myself with my treatments. Things like heart rate, blood pressure, digestion, temp regulation, immune system, and more. All that stuff doesn't work right when you have POTS." Usually this is met with faces of confusion and/or surprise. Then I explain some basics of how that effects me. "So when my heart rate is low I get chest pains, when my bp is low I pass out (a lot), when I eat I need to make sure I drink enough because the food doesn't always leave my stomach on its own." Here people usually ask how I control it all, so I explain some basics of my treatment plan. "I drink as much liquid and take in as much salt as possible. I take a handful of pills in morning and at night which control symptoms and help my heart rate and blood pressure. I avoid standing for long periods of time, can't push my body very much, and need to get at least 10 hours of sleep in order to avoid a flair up of symptoms."

I never know when I'm saying too much or too little, but I usually take cues from how much people are responding and what questions they ask. I personally would rather over explain than have people not understand what is wrong and think I'm just lazy or making things up. I hope this helps you out when you are explaining your condition to friends, that can be difficult and awkward for both sides of the conversation, so having some basic idea of how you want to explain it can help a lot in the long run.