Price I pay for a great Family Day!

Blood Pressure: 109/65
Heart Rate: 54

Today I feel like crap again. At least yesterday was fun. We went to the beach and (even though it was rainy and gross out) had an amazing time! I walked about a mile of boardwalk and splashed in the water for a little bit. I was a good girl and skipped the custard for a chocolate covered banana in my attempt to avoid dairy (mental note, the banana on a stick is very awkward to eat in public). And I pigged out on crabs and shrimp!  It was a great day, just now have to pay the price.

Setbacks.

On days like today, when I had plans to be with friends and have to cancel due to not feeling well, its hard to stay positive. But I just keep reminding myself that it could be worse. Tomorrow is the 26 year anniversary of my adoption. We call it "Family Day." This year we're going to Ocean City, MD for a family beach day to celebrate. Best case scenario, I have a fun filled day on the boardwalk and in the beach with my family and get to pig out on crabs. Worst case scenario, I lie on the beach all day and pig out on crabs anyway. But, a beach day with POTS isn't the same no matter how well it goes. I started hydrating today, need to wear my big floppy hat and slather on way more sunscreen than ever before, and I probably can't go into the water for too long or else my Raynaud's will act up. Again, I need to just stay positive and remind myself of the good things in life on those bad days. Crabs for dinner, beautiful beach views, and time with my family. Those are the things that really count.

Posts belated

I haven't been posting lately and for good reason. I'm doing a lot better on my new treatment! Florinef, B vitamins, Lunesta, Paxil, Midodrine. My cocktail of medications combined with high salt intake, high water intake, and more exercise has made a huge difference in how I feel and my abilities to function more normally. That coupled with the beautiful June weather and I haven't been spending too much time in bed with my computer. I don't know if anyone is actually reading these posts, but if someone is who has POTS, there is hope. I know it seems hopeless when you can barely get out of bed without passing out, when you feel like you can't do anything to get better, but don't lose hope. It is one thing we still have, no matter what! While I could stay here an write to you a post that seems like a song from a Broadway musical about not giving up hope, instead I'm going to go out in the sunshine and take a walk. Happy day to you!

The Dysautonomiacs Blog

I found this group tonight: http://thedysautonomiacs.blogspot.com/p/what-is-dysautonomia.html
Seems pretty cool. If you're interested in reading other blogs about dysautonomia, I recommend it.

Picture: Signs you're spending too much time in the house...

Breakthrough!

Ok, so in the last few weeks I've been seeing a "super" doctor over at Jefferson in Philly. He changed my meds around and it has made a HUGE difference. My blood pressure is much better, I'm not as dizzy, I haven't passed out (or even been near it). The only problems are that I am still exhausted all the time and I am very weak. My muscles have started to shrink in my legs, so I'm starting physical therapy at home to get my muscle mass back. Its hard, but I hope its worth it. Overall I feel better, but not well. Kind of feels like how you feel the day after you have a really tough workout and you haven't done much in a while. Very tired, weak, and hurt all over. Its not perfect, but its a step in the right direction, and therefore it gives me hope.

Being alive

Today I realized that I'll never be able to SCUBA dive again. Its something I love doing and its something I trained for a long time to earn the highest certification for. While this saddens me, I feel better when I remind myself that I DID SCUBA dive. I dove and I loved it. I'm glad I took that chance.


When I was growing up, I had chronic pain. I would stop playing with the other kids, come in from recess to the nurse at school, and be up late crying with my mom because my arms and legs hurt. For years the doctors said it was just growing pains and that I'd grow out of it. They said I was "overly dramatic" and that I "exaggerated" the extent of my pain. It wasn't until I was 11 that things changed. I went to the eye doctor with that I thought was a case of pink eye, that I was taken seriously. The eye problem I had wasn't pink eye, it was acute iritis. To explain it simply, my iris (the colored part of your eye) was swelling, a problem linked to a group of genetic disorders on the gene HLA-B27. From there I went to a specialist for tests to see what caused the iritis and what was causing my pain. At the time, I was misdiagnosed with something called Ankylosing Spondylitis (AS). AS is a disease which causes pain, but causes calcification to form over the swelling (mostly in the spine). I was told that my spine would fuse together and I would likely be in a wheelchair. I was given medications and lifestyle changes to follow in order to prevent permanent damage from happening. Like anyone else in this situation, I was scared. 


At first, my reaction was a strange mix of anger and disbelief, I would take my frustrations out on others and didn't handle it well. Then I realized that I had a blessing in disguise. While I may be confined to a wheelchair in the future, I had the time in the meanwhile to take advantage of. It was this realization that led me to do many of the things I did growing up. I was in 7 choirs, countless plays and performances, and was an active member of many student organizations. When I was a senior in high school, I decided I wanted to learn how to SCUBA dive. At the same time, I realized that I had only been to one overnight camp in my life and wanted that experience as well. I found Odyssey Expeditions. Odyssey was a summer month long SCUBA camp in the Caribbean. I ended up going two years in a row and earning my Master SCUBA Diver Certification from PADI. Years later the diagnosis was corrected to be fibromyalgia, which is good, because there is no permanent damage involved with the pain I feel. 




In the years since that misdiagnosis, have experienced things in that I treasure very dearly. I studied in Sevilla, Spain for a month when I was a freshman in college. I went to Mardi Gras parades more times than I can count. I fished on a dock with my Grampa and caught a big one. I climbed the Great Wall, saw the Taj, visited the Pyramids of Giza, and walked through rush hour in Tokyo. I literally circumnavigated the globe on a ship. I've loved and been loved and had my heart broken. I've slept outside in a tent for a summer and cooked on a campfire. I've eaten foods without knowing what they are and things I never thought I would be able to stomach (and liked it!). I've seen a play on Broadway, a symphony in Spain, and a rock concert at the Magic Kingdom. I've been on 6 week long roadtrips with my family (and yes, we saw the landfill of the Great Dysmal Swamp). I've had a jobs I love for companies I believe in. I've helped raise over $250,000 for charity. I've done all of this because I never want to regret not doing something while I could. Like Mark Twain said, "twenty years from now you will be more disappointed by the things that you didn't do than the ones you do." I've lived by those words. So now, when my health is failing me yet again, I know I have no regrets that I didn't do the things I wanted to do. I did the things I wanted to, I lived, I experienced life to its fullest. So now, if I find that I don't ever get better from POTS, I know that I've still done so many wonderful things. 


I have many years left, I'm not done. Not even close. I fully intend on continuing to travel, while going 8 hours into the rural mountains of Vietnam may be off the table from now on, I can still travel to places that are new. I guess I'm just going to have to find my new adventures. New ways to get that "adrenaline high". But no matter what restrictions life throws at me, I'll never stop trying to find the loopholes and experiencing life. I plan on living, not just being alive. 

So what's wrong with you?

About October 2009 I started to feel sick. It started with pain in my stomach around my belly button which just got worse no matter what I tried. I went to the doctor, had tests done, nothing. I went to a GI doctor, had dozens of more tests done, nothing. But I just kept getting worse. By the time spring came around, the GI doctor put me on a "low residue" diet, which is supposed to make it easier for you to digest food so it wouldn't bother whatever was causing the pain. I was on that diet for a whole summer: ensure, potatoes, anything clear and liquid, pasta, it was a strange mix of foods. Throughout the time I was on that diet I got weaker and weaker. I would have trouble walking, climbing the stairs, and standing for prolonged periods of time. At that time I also took a 3 month medical leave from work.

In August, with school approaching soon, I went back to my doctor. At this point, I was so weak that my Mom had to help me walk to the bathroom, to bathe, and to climb the stairs. I even occasionally had to use a wheelchair in public because I feared I would pass out. I cannot express enough how frustrating it was for me to be that reliant on others. The doctor recommended that I try gatorade because the diet I was on was likely not getting me enough electrolytes. Within a few days of starting gatorade, I was walking on my own again. While that was a huge step in the right direction, I still had the (now severe) abdominal pain. I had also developed some heart palpitations and severe fatigue. All of which I was told were likely no big deal since nothing serious had come of them yet and nothing showed abnormal on the tests.

At this point we had ruled out the possibility that the pain was GI related, so my doctor suggested a new approach. She said that while she now suspected that the symptoms were "psychological" we could try going to a cardiologist to see if the pain in my stomach was related to my aorta (since it was in that location). Since I knew that the pain wasn't "in my head" and was real, I made the soonest appointment with the cardiologist. This appointment with my cardiologist was the turning point. I explained to him the now growing list of symptoms I had: heart palpitations, fainting and near fainting, dizziness, nausea, weakness, chest pains, hot flashes and chills, fatigue, chronic pain (fibromyalgia), excessive thirst, sweating, and my toes turning white when cold (raynauds).  He told me from listening to my story and listening to my heart that he believed there was a physical problem but he wanted to run some more tests (yea, even more). He put me on a heart monitor for what was supposed to be two weeks, but after just a week, he had the data he needed because I was so symptomatic. I met with him again and he explained to me that he thought I have an Inappropriate Sinus Tachycardia and a Dysautonomia. Finally a name for this evil sickness. This explains everything. He started me on a beta blocker and suggested I push fluids and salt, don't have alcohol or caffeine, and take it easy. 

In September, I headed back to work and to school with new hope that it was over, but soon found I was wrong. One November day in class, I collapsed at my desk and was brought to the ER in an ambulance. Once they got me lying down I started to feel better, by the time we got to the ER they were treating me as if I had faked it. They put me in a chair and told me to wait there until someone could see me. I was left there for a few minutes and I passed out again. I'm not sure how long I was out that time, but when I came to, I was in a hospital gown, hooked up to an IV, with heart monitors on. They said my blood pressure went too low and they needed to watch me until it went back up. No one offered a reason why that happened, but they sent me home about 12 hours later with a flyer about low bp and instructions to drink more water. Gee thanks guys.  I had to leave school shortly after this, because I no longer felt it was safe to drive. 

We've since wiggled meds around, adjusted for my low bp, added meds for other symptoms, and more, but I'm still not "better". My average blood pressure at this point was 90/60, way too low to stand for a long time. I continued to work at this point, so I could get health insurance. My mom or sister would drive with me to work and wait until I was done every day I worked. This went on for a few months, but I had to stop going in January because I just couldn't handle the physical requirements anymore. Because I was out for 3 months this summer, I had no more medical leave days and so I had to resign (in early March) until I get better. Clearly what we were trying wasn't working. 

Frustrated because I am doing everything I'm supposed to and still getting worse, we decided to try going to a "super hospital" Jefferson for a second opinion on treatment. There I was told that I have a type of Dysautonomia called POTS Syndrome. We (yet again) changed up the meds, this time going off the beta blocker and adding Florinef and salt tablets. That was this month. So far my blood pressure has gone back up (110/70), my heart rate has gone down (60), but I  have severe weakness, fatigue, and other symptoms that make it hard to do daily things. At this point I'm frustrated but hopeful. I have a confirmed diagnosis. I have a nationally recognized cardiologist who is treating me, and he said that if he doesn't get me "functional" in a few months, he'll send me to Toledo, OH to see the world's best. I'll just take things day by day until then.

Unpleasantries

So all night I've been nibbling on salty snack foods like my doctor said to do. Then I took my nightly pills. About a half hour later I started throwing up. I proceeded throwing up a few times until I could keep my Zofran down long enough for it to work. Now this may sound like nothing much, but I loathe bodily fluids.  I would rather feel horrible longer and not throw up than to actually allow myself to lose it. For whatever reason, vomiting is probably one of my worst fears. People say you'll get used to it, but one, who would want to, and two, how the hell would you ever get used to it? They say morning sickness, chemo, the flu, even over drinking in college all help you. I'd avoid those things like the plague if I could. Well, this isn't one of my wittier or more pleasant blogs, but its whats on my mind. To those people out there with some reason why they have to throw up frequently, I am so very sorry. It sucks.

Update: It was the salt tablets that were making me sick. I stopped them and started feeling better in a few days. If you take salt tabs and get sick, talk to your doctor immediately, it can make you very dehydrated very fast which is bad for dysautonomia and low bp.

Crazy dreams thanks to my meds

Ok, so one of the side effects of my medication is that my dreams are very real and strange. I also tend to remember them much better. So today, to demonstrate this, I thought I would share one with you. It all started with choir practice with two of the girls I knew in high school. I was telling them about a new job I had just accepted in the middle of Antarctica. I was explaining how I get there through a wormhole that works like those in the Harry Potter movies. Then I met an alien, who looked like a human hot guy. Seeing as I was going to be doing a job in such a remote and unpopulated area, I decided to try to get this alien to impregnate me (yes the same way as humans do, not some strange sci fi way). It only made sense to go to work pregnant so I could help the population grow. So then I wormholed and the alien came with me. Fearing that the workers would deport him, I then went through elaborate attempts to hide my alien mate from everyone else. Two kind women helped me to escape with the alien through a van, but I'm not sure what sense that made since we ended up right back where we started in the first place. There was more to the dream, but I'm starting to forget it. you get the picture though.

Strange much?

Distractions

Ok, so I can't sleep. Not so surprising, considering that my new meds made me so tired that I slept all day. I just spent 2 hours googling what high salt foods I actually like, in an attempt to comply with my cardiologists' requests that I go on a high salt diet. My new meds have me craving salt, which helps. Plus, I have a strange craving for olives, how weird is that? So here I am in bed, mouth watering over the mere idea of salty foods, trying to keep my salt pill down, watching Grey's and sobbing over the usually Mere/McDreamy love issues. What is it about Grey's that makes you start sobbing 45 minutes into the show? Its just another thing that keeps me distracted from whats going on with my health and my life. This past summer, while I wasn't feeling well, I would paint my nails. Not just paint them, design them. Somewhere between choosing colors and matching the final product to my clothes later that day, I would not have to worry about how bad I felt. Bejeweled helped too, when I played, I would go into some kind of a game induced trance. Lately I've been playing World of Warcraft a lot. Its a nice mindless retreat for me into a world of make believe. One of the added benefits is that there are real people playing with me. I've become pretty lonely all day in the house with just my Mom and sister. WoW has given me friends outside my house, its given me an escape. Its finding what it is that can get you through, finding those things that can distract you from reality long enough to get you to the next step in recovery. With that, there is hope.