A word from the dentist

I recently went to the dentist and we discussed tooth health with POTS. I know it sounds strange, but I thought I would share just in case others hadn't thought about this. I usually brush my teeth twice a day (morning and night), floss weekly, and get checkups when I need to with the dentist. Last checkup I had some more enamel wearing than was normal. He asked what I eat to find the cause. I listed off my POTS foods (ensure, gatorade, ginger ale (for nausea), high salt diet, etc. He was shocked. At first he told me to stop with the salt and not to drink gatorade or ginger ale. When I explained to him why I NEED those in my diet, he backed off about stopping them and started explaining why they're bad. Those things eat at the enamel of your teeth. Mix that with the dry mouth from meds and its a recipe to have tooth decay. He told me to try to drink water after anything sugary (like gatorade). He also told me to chew gum as much as possible because it prevents dry mouth and dry mouth decays teeth too. So if you're like me and you're stuck with a POTSie diet: chase sugary foods and drinks with water, chew sugar free gum as much as possible, and brush your teeth a MINIMUM of 3 times a day.

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...