The Tilt Table Test

 The tilt table test is a diagnostic test that is used by doctors to better diagnose orthostatic intolerance and therefore POTS. I'm writing this post because I have seen on several Facebook groups that people are nervous when going to the test. I had mine and I can tell you, its easy peasy! Hopefully a detailed explanation will help. 

  First, the person prepping you will bring you into the room with a large metal table, it will have at least one strap on it, but maybe two. It looks scarier than it is. The doctor will have you lie down on a table with your feet on the bottom where there is a ledge. They will secure the straps across the front of you. These straps are good for you, they prevent you from falling or hurting yourself if you faint. They will hook you up to heart monitors that should look familiar, but they'll be the ones with sticky tabs on your skin, they don't hurt! They will put an iv in your arm for fluids, but won't start them yet. (I honestly think the iv prick is the worst part.) They'll take your BP and then you're ready to go. 

   Next, the actual test starts. They will slowly raise the head of the table until you are being held up by your feet on the ledge on the bottom. Remember the straps are there so you can't fall if you faint, so there is no reason to be scared. They will talk to you and monitor you for a set period of time (about 15 minutes). If you faint, they lie the table down and give you iv fluids until you wake. If you don't faint, they may give you nitroglycerine under your tongue by spray or a tablet (both have no flavor). They will have you stand for additional time after the nitro to see if you faint. Again, if you faint, you get fluids and lie down. If not, they lower the table and your test is negative. 

   My experience was pretty much as described. I started getting dizzy and woozy when standing but didn't faint. They sprayed the nitro in my mouth and I was out in a minute. If you have fainted before, it feels just like that. If you haven't fainted, it can feel strange. It is different for everyone. Some people get physical signs before they faint, like sweating, heart beat changes, and tunnel vision. Some people have no warning. But in the TTT, the fainting isn't nearly as bad because there are fluids in you immediately, you're not going to get hurt, and they lie you flat quickly. I understand being apprehensive about a test you have never had before, but its something that you can do. We're all strong and brave POTSies! 

Zombies! Run!

Update: 

Nothing like fainting down the stairs to wake you up. 

Still no service dog, the ones that were possibilities for this class weren't right for me. One was "unmotivated" and placed as a home companion and the other "alerts by peeing on things and people." Needless to say, not a good dog for a girl who faints as often as I do. He has been placed with a friend of mine from CPL who doesn't need alerts. Still waiting for the right dog to come along, can't wait! 

I returned to Dr. Grubb last month, this time by train, which was quite an adventure. He is still the wizard! We are going to try Epogen (if my insurance ever approves it). For those of you who don't know, Epogen is a drug that you inject weekly and it increases the red blood cells in your blood. Since I increase my blood volume so much with water, salt, and florinef, the thought is that my blood might be too "thin" and Epogen might help. Dr. Grubb published his findings with the drug in the American Journal of Therapeutics (see Here).  Its not a treatment for everyone, its risky and reserved for those with more serious cases of POTS, but we're at that point. I'll let you guys know how that goes once I try it. More articles on the subject are available Here.

My health has continued to decline, I am still fainting 3-6 times a day, but now I am doing a lot less in that day. Fatigue has become a serious problem. For those of you who don't have POTS, EDS, or CFS, fatigue is not just being tired, it can be truly debilitating. Imagine you don't sleep one night, then run a mud run marathon whilst being chased by zombies, host a children's birthday party, don't eat for a day, and then jump rope for an hour. While this sounds silly, the fatigue really is irrational as well. I was awake today for two hours when I needed a nap, in that time I got dressed, went downstairs, heated up leftovers, ate, and sat with my dad to chat. In normal people, that wouldn't leave them brain foggy and tired. I have yet to find anything other than naps and keeping up with hydration to help with the fatigue. 

On the plus side, my wedding planning is going along smoothly. I still haven't figured out how POTS is going to impact my big day, but I have several months left before I know what condition I will be then. I'm crossing my fingers that I will be able to try the Epogen and that it will have a positive impact on my fainting and fatigue. Right now I am trying to keep an open mindset about the possibility of needing a wheelchair on my wedding day and how that might change my day. No matter what happens, I will be marrying my best friend and surrounded by ones I love, all will be fine.

Living on a prayer...

We're going to see the Wizard!

 I haven't written for a while, life has gotten difficult and to be honest, I just forgot. I went to see Dr. Grubb in Toledo. If you have POTS and you are even considering it, go. It is worth the trip, the expenses to stay nearby, and he is truly amazing. At my appointment he explained to be the cause of my particular case of POTS is actually something different, a connective tissue disease called Ehlers-Danlos Syndrome or EDS. It is a connective tissue disease that has several types, my type is hyper mobility. With hyper mobile joints, tendons, ligaments, and everything else, it causes a whole lot of symptoms that were previously unexplained. I will leave you to research that on your own, but if you have adult onset POTS and EDS, your chances are a lot less likely that you will ever get completely better. My research suggested this while i was reading medical journals recently, and my doctor confirmed my fears, I probably will never get better. I had that idea in the back of my mind, but I kept hoping that one day I would outgrow it or spontaneously recover. Wouldn't that be a great day. My doctor told me that she thinks I need to take some time to grieve the life I expected and the life I had and work towards acceptance of my POTS and EDS as my new normal. I'm not ready to do that. To me thats giving up.

New Pacemaker
New Pacemaker scar...

 While I understand that this may never get better, I still have hopes that if I get a service dog, I won't be stuck in the condition I'm in right now. I won't be fainting all the time because the dog will alert me so I can lie down. I won't need to wear a helmet all the time, because I won't be fainting. I won't be getting constant concussions and dealing with the injuries from fainting, because I won't be fainting. I won't require a wheelchair as much, because the dog will help with my fatigue and will prevent me from fainting. I guess I have a lot of eggs in this one basket, but its the only thing we have left to try.
 My new pacemaker is pacing 60% of the time (I'm in bed the rest so it doesn't need to pace). We had hopes after my surgery that this new Evia Pacemaker by Biotronik would work, but I'm still fainting. We've tried all the drugs that are used for POTS. We have tried the high salt diet, the high liquids, the gatorade, the weight gain, all to prevent me from fainting and all its done is make me gain weight. We're at the end of the line for options as far as I know. I should find out soon if I will get a dog for the next class, crossing our fingers and saying lots of prayers. I'm not ready to grieve the life I used to have. I'm ready to get a partner who will help me live a life I'll love.

We're off to see the wizard!

Tomorrow is a huge day for me. I have an appointment with the famous Dr. Grubb at the University of Toledo Medical Center. I feel like I've been waiting forever for this, even though it has only been about 13 months. You'd think that with all that time I'd have worked out my nerves, but I haven't. I feel like I've put so many eggs in this basket and what if he doesn't have anything new for me to try or new information? What if he says this is it, this is as good as I'm ever going to feel? What if this is it, we are at the end of our options? I think of those possibilities and try to remind myself that there are possible good outcomes as well. What if he says he has a treatment for me to try and it works? What if he can tell me information about POTS that no one could before? What if he tells me things will get better? What if they do? I guess in the end, worrying that things won't go well won't get me any further than hoping for a good outcome. Either way I could get hurt or not, but only one will make me feel bad now. Tonight I will resolve to keep a positive mindset and hope for the best. So tomorrow we see the wizard, wish me luck!

Surprise!

Hi friends. I haven't written for a while for various reasons, but mostly because my health took a turn and I felt for a while like it wasn't POTS related so I didn't want to add it to the blog and possibly confuse people or just complicate things in general. Long story short, I had my heart attack in March and, even though I had a clean cath (they didn't see heart damage), it somehow damaged my hearts nerves. I started in July having more fainting with a different pattern than with my POTS. I would have NO warning and just drop. The loop recorder that we implanted caught the problem, a heart rhythm problem separate from POTS. (Like I needed two of them?) I found out that I needed a pacemaker and had one implanted within a week. Once again, for about a month after surgery I feel a lot better, but we think it was just my nervous system responding to the stress of surgery, it wore off though. The pacemaker is catching the heart rhythm problems from when I have my MI, but not the BP type faints from my POTS, so I still faint, just not as often.
So thats where I am now. I had some ups and downs with my POTS since then, even doing so well that I didn't wear my helmet for about a month, but it came back again after Thanksgiving. Since Thanksgiving I've been really struggling. Since then I've averaged about two or three faints a day, with 12 being my worst. Even with wearing the helmet again, it still hurts. I'm starting to feel damage being done to my knees, and bruises are becoming a constant reminder to me that this is all real. Sometimes it doesn't seem real, it seems like a bad dream or a cruel joke someone is playing on me. It makes me mad and frustrated, how could it not? But I keep reminding myself it could be worse. I keep reminding myself that we are working on getting me back to my life, I want nothing more than to be better so I can be myself again, not this sick woman who is stuck in this body that doesn't work.
I don't want POTS to hold me back from things, but I literally cannot do some things now. I really hate relying on other people, but at the same time, I don't have another choice. I can't take a shower without someone nearby, because I faint in the shower and someone has to be there to help me. That happened last night and I was unconscious for minutes because my Mom couldn't get me flat so my head was below my heart from the angle I was at. Thats scary, for me and my mom, I've started to space my showers out more, use a shower chair, use a hose shower, and only take them when my bp is high enough. Even with those precautions though, I faint almost every time I shower.

We finally got a wheelchair, which is very helpful when I'm out in public, but its too heavy for me or my mom to get in and out of the car, much less into the house. We're talking about getting a rollator or transport wheelchair for me to sit on in the house to get around, but we'll see. I am also still in the process of getting a service dog. I've been on the list for a while, but I need a poodle for my dad's allergies and it needs to be one that can cardiac alert, so it'll be a while before I get one. I have met several POTSies who have service dogs though and every one of them recommends it. It may be a big responsibility and limiting in some ways, it can give you your independence back and in my opinion, there is nothing that is more important than that for a POTS patient.
So I guess I'm going to leave you with this, a short update. I'll try to start writing more, I don't know if anyone is reading anymore, but if you are, I hope you're well.

In other news:

I got engaged!

Over 4,000 pageviews! Thanks for reading!

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

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.

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?

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. 

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.

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...

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!

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.

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.**

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!

Coke anyone?

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

Posted by hopeful hillary Reposted from http://hopealways.wordpress.com/

If 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

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