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