Friday, July 27, 2012

Tuesday, July 24, 2012

Life after the loop...

Hey there guys and gals,
I wanted to give you a quick update. My loop recorder surgery went well, actually it was better than expected. My amazing cardiologist and plastic surgeon team were able to put the implant under my breast tissue instead of on my upper chest. That means that the scar won't show (even in a bikini) and the device won't show! I am very excited about that fact. The surgery went well, as expected I was in a lot of pain after (apparently it hurts more where they put mind because the nerves there are more sensitive) but the pain pills they gave me helped with that. I still have some pain when I move around and with tight clothes, but I'm told that will go away over time (this thing is only in for a maximum of 3 years anyway). Overall I'm really happy I got the loop. We have some early results which suggest we may know what is going on, but I won't know more until I get more recordings. Luckily I have been having an easier time since surgery, my doctor thinks I may be in a mild remission due to the stress of surgery. While I've been very tired and sleeping a lot, I haven't been passing out more than once a day since surgery! I'm very optimistic about that. It helps me remember that I could get better one day and have all of this be a memory. Besides the medical stuff, my life is going great! I have been catching up with old friends, started dating an amazing guy, and I've been getting out of the house more. I've been able to help more with chores in the house, with the dogs, and in the garden too! I'm looking into starting an Etsy account to make some extra money with crafts, so we'll see how that goes. I'm also looking forward to going to visit family around Halloween in New Orleans. Overall even with the POTS, life is going well. I guess its all a matter of adapting after all.
Be well,
Phoenix

There's a case for that...

Recently at a service dog training session, it occurred to me that the dogs would be trained to bring me my phone if I asked them to... in their mouth. As disgusting as that sounds, it actually will be very helpful if my phone is on a different floor of my house. The former Apple employee in me was concerned about the potential "water" damage this could cause for the phone, not to mention the potential for drops in the dirt. Ladies and gentlemen of the iPhone persuasion, I have come up with a solution that not only helps with service dogs, but also with POTS fainting in general. Introducing the Life Proof Case. Check out the website. While before POTS I never would've shelled out $80 on a case, with the number of drops mine gets and the need to have it with me rain or shine, this is gonna be invaluable. I hope you like it. http://www.lifeproof.com/the-four-proofs

Friday, July 6, 2012

Can't sleep...


Do you ever feel sometimes like you hate how you deal with things? Like things that stress you out? If its something big, I tend to shut down. I take a nap, do some mindless stuff, and wait until I am ready to deal with it before allowing myself to stress about it. That happened today. I went to the doctor and they looked at my initial two recordings. I guess I had been so focused on just getting results that I hadn't really thought through what the results would mean and if they even mattered. While its still too soon to know anything, we do know that there is something wrong with the electrical system in my heart. It doesn't seem to be anything potentially fatal like VF or long stops of the heart, but there is something they see that they think is causing me to be fainting. When the doctor was done talking about it (I glazed over pretty much on the medical speak), I asked about treatments. He paused for a minute and explained that we are already doing everything we need to be doing. If we keep seeing the same thing on the data coming in, we could try a pacing pace maker to keep my heartrate in sync with my BP short term, but that only has about a 50% chance of working and is more invasive than the loop recorder I had put in this week. When I asked what the next treatment would be if the pacing didn't work and he put his hands on his hips and said that he thinks we're at the end of the line. The only other options after that would be whatever Dr. Grubb could come up with for me. So I asked him what to do until then, he said we keep doing what we're doing, try to get as much data as possible, and just wait it out. I said, "so we're talking a wheelchair and helmet and fainting all the time?" He said we just need to wait for the data.
I know this may seem like I'm stressing over hypothetical situations, but I'm losing days, weeks, months, and years in my life that I will never get back. Since getting home this morning I pretty much was curled up in bed most of the day avoiding thinking about this. Once it got dark, I forced myself to go outside and water the plants so they don't die. I just got to bed and now the bomb has gone off. Now I'm feeling all this stress, this anger and frustration at once. Sometimes I wish I could just scream and let it all out, but thats never worked for me. I just want my life back. I know it will never be the same as it was. I know I will likely be in a wheelchair for a while. I know it won't be easy, but I'm so tired of watching my life pass me by.

Thursday, June 28, 2012

Surgery tomorrow

My EEG mummy look. 
Tomorrow I am having surgery to get an implantable loop recorder put in. Its a small device, about the size of a flash drive, that will be put under my muscle tissue in my chest. It will detect irregular heart beats and give us a better picture of what is going on with all the fainting. The loop recorder can be left in for up to three years, so that will give us lots of data to work with.
I have to admit, I'm nervous about the surgery. Not in a "am I going to die" kind of way, more in the sense that I'm going to be unconscious on a table with two guys holding scalpels cutting me open. The risk of the surgery is negligible, its the risk of infection post-op that is what we need to worry about, especially with me fainting so much. Each time I faint while recovering, it risks ripping open stitches and allowing bacteria in. For that reason, I think my next week will probably be spent in bed. I'm changed my sheets, stocked my room with snacks and movies, bought some new coloring books, and sorted my next two weeks worth of pills out. I feel ready, I'm just nervous.
My broken finger. :(
Anyway, I wanted to give an update on progress.
I'm on wait lists for service dog and Dr. Grubb.
I broke my finger the other day falling on the steps in front of our house.
My EEG came out normal, no seizures!


In other news, our garden is in full bloom! Got Pots? :)
Got POTS?

Thursday, June 21, 2012

Rise Above

I'm frustrated and I'm angry, but thats okay. These emotions have gotten a bad rep in modern culture. We like things to be polite, nice, and positive. Negativity is generally frowned upon, but needn't be. While walking around angry all day is no way to live, its still a valid emotion in some situations, one of which being dealing with disability. 
I just fainted outside on the gravel and stepping stones in front of our house. This has become a regular occurrence in the past few weeks, but today was different. Until today I had been biding my time until my wheelchair came, today my insurance notified me that they don't see it as medically necessary because my legs work and aren't going to cover it for POTS. While I have every intention of fighting back, this angers me. It infuriates me. I have been passing out everyday multiple times a day for weeks. Even with a helmet, thats a lot of injuries. Only last week we found out it wasn't seizures, so now we're moving forward with the loop recorder implant. When the neurologist found out I had been waiting since April for a wheelchair he said that was "unacceptable" and that I should be in a wheelchair all the time. He stressed the point that I've been lucky to not have any spinal injuries or broken bones (except my finger). He even said that I should sleep on the first floor until we get this all under control. My cardiologist said similar things as well. I hate that the insurance is preventing me from getting the things I need to get some of my life back. 
I'm angry at insurance, for not covering me for my wheelchair. I am angry with the situation I'm in, having to be so dependent and not being able to do the things I want. I'm angry with my body for not doing what I need it to do, not even allowing me to stand sometimes. While this seems really negative, an in a way it is, just the act of acknowledging my anger seems to help. I know that this situation may be permanent and it may be temporary, but I'm just tired of fighting needless fights while I'm treading water to keep myself going. 
On days like this, when the negative seems to be taking over, I remind myself of my mantra. "You can't be a phoenix without ashes." Bad things are going to happen in your life. You will be frustrated, hurt, depressed, betrayed, and more, but you can't let that define you; let it transform you into something better. These things present us with opportunities if we look at them in the right way, opportunities to become better and stronger people. If we look at the challenges we are faced with as chances to improve ourselves, we can get through them. Then you can rise above and be a phoenix. 

Tuesday, June 5, 2012

Adapting

I find myself surprised by how quickly things seem to pass. Today I was getting dressed and put my helmet on without thinking. I looked in the mirror to make sure my necklace was on straight and it took me a second to notice the bright green helmet sitting on my head. When I got the helmet, I thought I would never get used to it. Then it was this clunky big thing sitting on my head making me feel and look like a doofus. Then it was just another way for me to look and feel like there was something wrong with me. Then it was my version of an ever present reminder that I wasn't healthy.
At first I just got stared at. Then there were some snickers and whispering by kids and teens. I've had my share of stupid questions asked "Are you retarded?," "What's wrong with you?," and "You know you still have your helmet on?" I've had embarrassing moments because I'm wearing the helmet, but they don't matter. What matters is that when I wear it and faint, I don't get a concussion. I've realized what should have been obvious to me in the first place (if not ignored by my own self-consciousness) the way I look today doesn't matter, protecting my head from permanent damage does matter. I guess it just took me time to adjust my way of seeing it, but I feel like I got there. Now when someone asks, instead of being embarrassed, I explain that I have a heart condition that makes me faint and the helmet protects my head. Simple as that is, it both educates them and reminds me why its so important to wear.
So while I probably won't be winning any fashion shows today, I have the most important piece in my outfit proudly on my head. Its my crown of sorts. I am proud to wear it because it reminds me of everything I've been through and the fact that I am taking control to ensure that tomorrow will be better.

Its all about adapting to what you're given and making the best of it.

Wednesday, May 23, 2012

I was just sitting here frustrated after my latest fall about the limitations I've been facing in the last few months. It then occurred to me that I've literally been around the world on a ship. I've seen a volcano erupting, real pirates, and whales out my window. I've spent a summer living in a tent and two summers on a boat. I'm a PADI Master Diver and have gone diving with sharks. I've met some pretty incredible people and done some incredible things, while I'm limited physically right now I won't let that stop me from continuing my life of craziness. I'll just look at this as time to plan my next adventure. 


Maybe I should make a bucket list...

Wednesday, May 9, 2012

Waiting...

Lately I've been feeling like I'm waiting for my life to change. I wish I could make it change, I'm such a control freak and the lack of control right now with my health is very hard for me.

These are the things I'm waiting for right now that will make my life easier.
Service dog interview: May 17th
Wheelchair arrival: May 30th
24 hour EEG: June 5th
Neurologist appointment: June
Loop recorder implantation surgery: Sometime in late June
Dr. Grubb appointment in Toledo: Probably February

I've been trying to keep my eye on the goal, I find that helps on rough days like today. Make the little things count! Be well!

Friday, April 27, 2012

Roller coster ride...



Life has been rough this past month. Because of that, every time I go to write an update, I stop. Its like if I write what has been going on, it will be real. I guess its real either way, I just haven't felt up to sharing it. Some of you know I had a heart attack last month. It wasn't the typical clogged arteries heart attack, it was something called prinzmetal angina. Since then, I've been on a roller coaster ride.
I was taking a drug called Norvasc to precent the angina from causing another heart attack, but it has been making me pass out. I've passed out 23 times in the 26 days I've been taking Norvasc, thats a lot of concussions. I would've stopped the meds, but fainting beats a heart attack and there aren't many options to prevent this type of angina for someone with POTS. I started having constant headaches, dizziness, and nausea from all the head bumps, so I bought a helmet (as mentioned in a previous blog entry). I also started using a wheelchair in public (I didn't want to wear a helmet in public but it actually really helps with fatigue as well). Monday I will have a meeting to get fitted for a wheelchair of my own for the places (like the grocery) that don't have wheelchairs to borrow.
At my last cardiologist meeting he suggested that I get something called an implantable loop recorder to better see what is going on with my heart. I feel like I need to get it, but I'm very nervous about it. I hear it leaves a very nasty scar right below the collarbone on your chest, not a pretty sight for a 26 year old girl. I guess a helmet isn't any better, but at least thats temporary.
In the grand scheme of things, this is no big deal, but it has been very difficult for me to deal with; passing out all the time, concussions, and losing my independence even more than before. I always try to write things that are positive or that I think someone else could benefit from, but tonight is just an update. Be well fellow POTSies.

Thursday, April 26, 2012

Service Dog Application


These are my essays. I found out today that I have an interview next week, so we're crossing our fingers!

The application asked me to describe myself, my home, my life, etc. 
I’m not sure where to start because I never thought I’d be here. I never thought I would need a service dog, I never thought I’d be disabled. I was always a very active, involved, and busy person. I did a lot of community service, was very involved in theater and music, and even served as the mascot of my university. I kept my grades up and was the typical twenty something student. After graduating from college, I was having trouble finding a job, so I took jobs working at a camp and then at a charity haunted house. I ended up having to leave the job at the haunted house a week early because I was very sick. That was the beginning of my illness.
No one knows why people get POTS, but one commonality between most patients is some kind of illness or trauma, that could have been mine. Unfortunately, my POTS didn’t initially present as is typical. I started with abdominal pains, which even after months of testing and procedures we couldn’t find the cause for. At this time, I was working and going to school at to get another degree. I was working through the discomfort and loving my job and my classes. Over this period of time though, I also had several nondescript symptoms like dizziness, headaches, and severe fatigue. As a last resort, my doctor sent me to a cardiologist to see if they would be able to find something. He did. By the time I left the cardiologist I had a working diagnosis of dysautonomia, which with a tilt test and heart monitor was confirmed a few weeks later. While I was grateful to have a diagnosis, POTS is known to extremely difficult to treat.
Since being diagnosed, my condition has deteriorated. I went from being a healthy young adult to having trouble getting around. I had to leave my job at Apple and leave school because I couldn’t safely drive alone and the physical demands of walking and standing were getting to be too much for me. 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 drink ensures to make sure I get enough nutrients everyday because I'm too nauseous for real food. I never thought I'd buy a helmet to wear to prevent more concussions or a wheelchair to prevent me from fainting in public. 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 I'd leave work for disability at age 25 or have my first heart attack at 26. 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.
I am very grateful for the things I do have though. My family is extremely supportive and helpful to me. I have a nice house to live in, my own room, and financially I’m stable. Although I can’t work outside the home, I spend time working on crafts at home and I’m thinking about starting an Etsy site to sell them online. I play World of Warcraft as a social outlet and entertainment and keep up with friends online when I can’t get out. While all of these things help me significantly, its not the same as being able to get in the car and go visit a friend or being able to just go to the grocery when I need something. I miss being able to work, to get out of the house everyday, to have the freedom to go where I want. I hate being so dependant on other people, its not who 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 have to live at home, because I can’t work and I can’t live on my own. I drink gallons of Gatorade, I eat tons of salt, and I take tons of prescribed pills. I keep my weight up at 135lbs, which at 5’5 is higher than 125 like I want it to be back at. I am also starting a cardiac physical therapy program soon, 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 slow me down 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 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 great.
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 truly appreciate and am grateful for every step I take. I fought for each one. You can't be a phoenix rising without ashes.


Function of a service dog essay. This one is supposed to talk about how a service dog could help me.
When I found out that a service dog could help me I was surprised and encouraged. I guess I had always seen service dogs as helping blind people or people in wheelchairs, the idea that one could help me hadn’t crossed my mind. One of the hardest things for me to do was admit that this is something that I cannot do on my own. I’ve always been a very independent person, I pride myself in the things I can do and have done, but things have changed. Where once I was traveling around the world for a study abroad, now I have trouble getting down the stairs. Where once I was able to go on road trips alone, now I’m afraid to leave the house alone. Where once I was able to work and go to school, now I struggle to get out of bed in the morning. Where once I used to SCUBA dive and be a rescue diver, now I have to come to terms with the fact that I’m the one who needs help. We’ve just run out of options. I’ve tried various treatments for almost two years now, but none of them have helped me enough for me to regain my independence. What’s worse is that if we find one that works, my body changes and we need to readjust. It’s a constant battle and a constant source of frustration. While I know a service dog can’t fix everything, if it can help me with little things, like getting down the stairs safely, it would be a huge improvement in my quality of life.
            I honestly still don’t know everything a service dog can or cannot do, I think the biggest thing that a service dog could do is warn me if I’m going to pass out. I’ve done research and know that this isn’t an exact science and it may not work every time, but just preventing a few falls could be very helpful. Each time I fall, I risk injuries to my head, I’ve already had countless concussions. When I do pass out, someone shaking me can help me come to faster, a service dog could accomplish this by licking me. My dog Lexi already does this and it works pretty well. Once I regain consciousness, I need to try to not panic. That may seem easy to do, but when you’re lying on the floor in a public place with people shouting around you for ambulances and doctors, it is hard to stay calm. If I don’t stay calm, I have a panic attack and that just adds to the heart troubles and prolongs the time it takes for me to recover. Right now my Mom stays with me and keeps me calm, but I’d like to one day be able to go somewhere without her having to be there. Another thing when I faint is that I need to slowly sit up afterwards so I won’t pass out again, but I’m usually very weak so sitting upright without something to lean on is difficult. If a dog had a harness for me to hold onto or could somehow brace me from behind it would be much easier for me to recover. Also being able to have a dog to steady myself when standing after fainting would be helpful when I’m not near something to hold onto, this would help reduce the risk of me falling again. One fear I have is that I will pass out somewhere unsafe like the street or be robbed or hurt while unconscious. Having a dog there to pull me to safety or to deter people from hurting me would give me a sense of security in a time when I am very vulnerable.
            Besides the instances when I pass out, I think that a service dog could help me with less crucial things as well and assist me in doing things that I cannot do right now. I have a lot of trouble bending over and standing back up. This means that when I drop something, it can be a struggle to pick it up. From what I’ve read, this can be a simple task for a service dog, and will help me to prevent fainting. Another thing is that getting up and down from a sitting position can also aggravate my POTS, if a service dog could retrieve things for me, it would prevent unnecessary blood pressure problems. Another thing that a service dog could help me with would be to carry things up the stairs. I need to hold onto the railing when climbing stairs so having a dog be able to carry things like water bottles or laundry up the stairs would help me a lot.
            Besides the physical assistance, a service dog could help me in other ways. I wish to regain my independence. I rely so much on my Mom, Dad and sister and I know that while they are always happy to help me, that it adds a strain on them. There are so many things I love about dogs. I grew up with dogs as siblings in our house, our family has always bonded very closely with them. Dogs can ease your mind when you’re worried with a nudge of their nose. They can make you laugh by being goofy when you’re stressed. They can make you feel happy when you’re down just by wagging their tails. I love my dogs very much, but being wire-haired fox terriers, they lack the temperament and physique of a service dog for my needs. For that, we need a new family member to help me.
            I hope in return, I will give my dog all the love and loyalty that I can. I can provide it with a sense of purpose and be its companion for life. As with all of the dogs we have loved, I can provide it with excellent medical care and will attend to its needs. My girls (dogs) and I like to have “girl time” on my bed. We all climb on my bed and snuggle, play, and eventually all end up napping together. A service dog would be welcomed into our family. We appreciate all the work and training that goes into such a skilled and amazing dog and would show our appreciation everyday. 

** I have taken some identifying information out.**

Sunday, April 15, 2012

Apple head helmet

So I've been having a really tough time these past few weeks. I haven't posted anything about it because I've been passing out multiple times a day, hitting my head when I fall, and dealing with constant fatigue and headaches. So I gave in and bought a helmet yesterday. I hate that I have to wear it, but its better then the daily concussions I've been having. I've passed out 1-3x daily for almost 3 weeks, thats a lot of head bumps. So far its already paid for itself, I have fainted 3x since putting it on and no head injuries. I never thought I'd be here, wearing a helmet like this, but it is what it is and you just have to roll with it. Its not permanent, its just for at home (I'm using a wheelchair in public) and at least I got a cute one!



Wednesday, April 11, 2012

Coke anyone?

Interesting info about how Cola works on the body...

coke canIf you want to be healthy, don’t drink coke (or any soft drink for that matter). It’ so bad for you for so many reasons that I was shocked even researching the effects of soda on the body.
The main problem is refined sugar. It’s a terrible danger that the processed food industry and sugar growers don’t want people to know about.
So, what happens?…
…When somebody drinks a Coke…
  • In The First 10 minutes: 10 teaspoons of sugar hit your system. (100% of your recommended daily intake.) You don’t immediately vomit from the overwhelming sweetness because phosphoric acid cuts the flavor allowing you to keep it down.
  • 20 minutes: Your blood sugar spikes, causing an insulin burst. Your liver responds to this by turning any sugar it can get its hands on into fat. (There’s plenty of that at this particular moment)
  • 40 minutes: Caffeine absorption is complete. Your pupils dilate, your blood pressure rises, as a response your livers dumps more sugar into your bloodstream. The adenosine receptors in your brain are now blocked preventing drowsiness.
  • 45 minutes: Your body ups your dopamine production stimulating the pleasure centers of your brain. This is physically the same way heroin works, by the way. Drugs aren’t called “dope” for no reason.
  • >60 minutes: The phosphoric acid binds calcium, magnesium and zinc in your lower intestine, providing a further boost in metabolism. This is compounded by high doses of sugar and artificial sweeteners also increasing the urinary excretion of calcium.
  • >60 Minutes: The caffeine’s diuretic properties come into play. (It makes you have to pee.) It is now assured that you’ll evacuate the bonded calcium, magnesium and zinc that was headed to your bones as well as sodium, electrolyte and water.
  • >60 minutes: As the rave inside of you dies down you’ll start to have a sugar crash. You may become irritable and/or sluggish. You’ve also now, literally, urinated away all the water that was in the Coke. But not before infusing it with valuable nutrients your body could have used for things like even having the ability to hydrate your system or build strong bones and teeth.
So there you have it, an avalanche of destruction in a single can. Imagine drinking this day after day, week after week. Stick to water and real juice from fresh squeezed fruit.
Especially if you have Dysautonomia, DON’T DRINK IT!
*Note: this information applies to all coke products, including DIET, ZERO, etc. Don’t let them fool you.

POTS in the news...

The Washington Post did an article on POTS!

http://www.washingtonpost.com/wp-dyn/content/article/2010/02/12/AR2010021204444.html

Sunday, April 8, 2012

Another speed bump...

Bumps in the road are to be expected with POTS, but sometimes when you're having a tough time, its hard to not just give up. I've passed out 9 times in the last 8 days. I think I know why, I started calcium channel blockers, but I need to be on those to prevent me from having another coronary vasospasm like the one that caused my heart attack last month. I'm in a tricky little catch 22 here... I can't take the beta blockers because they lower my bp too much without midodrine, and I can't take the midodrine because they think it caused my heart attack. Without the beta blockers, I am full on POTSy, even with florinef and extra salt and water. So the meds that help my POTS cause a heart att

Tuesday, March 27, 2012

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.

Sunday, March 25, 2012

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!

Thursday, March 22, 2012

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.


Monday, March 12, 2012

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.

Friday, March 9, 2012

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...

Tuesday, February 28, 2012

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!

Friday, February 24, 2012

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...

Wednesday, February 22, 2012

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!

Sunday, February 19, 2012

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.

Tuesday, January 24, 2012

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.