Welcome and Introduction

Welcome to my first public blog. I have to admit I'm a little anxious about this. I mean, I have another blog, but it's only for friends. To put yourself out there for the world to see is kind of a scary thing. I think, though, that the possible benefits of this blog will greatly outweigh the bad that could happen.

My name is Emi. I am 24 years old and I live in Northern Ohio. I'm a writer hoping to become a novelist. I'm a Shamanistic Pagan, which means I work with animals and spirits in my magical dealings. I feel very connected to nature and to animals, especially. I have 2 cats named Rhapsody and Bug. I am engaged to a wonderful man named Asher, and we're going to be married in July 18, 2012 (I still have so much planning to do!)

So, my illnesses:
Fibromyalgia (autoimmune chronic pain disease that affects the muscles)
Postural Orthostatic Tachycardia Syndrome (heart condition in which the heart rate goes up really high and the blood pressure goes really low)
Syncope (fainting)
Social Anxiety Disorder (phobia of social interaction and large crowds)
Depression/Suicide
Anemia (the iron in the blood is low)
Chronic migraines (really bad headaches that occur very often)
Protein in urine (this has to do with the kidneys and their filtering system)
Irritable Bowl Syndrom (IBS)

So, what does all of that mean for me?


Fibromyalgia
I hurt all the time. I constantly take Tylenol, but it doesn't always help. My legs and arms are the worst. Sometimes it hurts just to walk. And if I've been up and about walking too much, I have to stop. My joints hurt a lot too, and I'm not really sure if that has anything to do with the Fibro, but they do kind of go together.

Chronic Migraines
Luckily the headaches are finally being taken care of. But when I do get one, I'm sensitive to light and sound. I lock myself up in a dark room, with a cold wrap on my eyes. My doctor has me rate my headaches based on levels 1 through 3, 3 being the worst. When I get a level 3, I might as well be dead to the world. I start shaking, throwing up, and I have started to go into shock because of them before. These are the ones that usually end with me in the hospital.

Now it's normal for me to have around 8 level 2 headaches through the month and I take pills (Amerge) for it. If I don't watch it early, it doesn't take long for it to turn into a really, really bad level 3. My doctor still wants to make it so we have less and less headaches. I'm all for that! We just have to find the right combination of medication and vitamins.

POTS/Syncope
My fainting wasn't new. I get this "tunnel vision". It starts going black around the edges, and then quickly starts going inward. Usually I grab the wall and close my eyes. One day, everything went black, and I slammed my head into the door frame. I could feel myself falling, but I couldn't move. After that my headache doctor sent me to the syncope clinic.

I had a tilt table test, which is where they strap me to a table, then tilt it 45 degrees, then close to 90 degrees. I had only been close to standing for 10 minutes when I felt hot and uncomfortable, and all of a sudden my tunnel vision started. Apparently my heart rate went to 171 beats per minute when normal resting is usually about 90bpm. My blood pressure plummeted down to 74/45. They stopped the test instantly.

When I went to take my stress test, they were afraid to start it because my standing heart rate was 130 to 140bpm. Again, the normal resting rate is at 90bpm.

My normal resting heart rate now is around 130bpm. It almost feels normal to me know even though I know it isn't.

There isn't much they can do. I have to wear support stockings, and am now taking a beta blocker which is supposed to regulate my blood pressure. Sometimes it helps, sometimes it doesn't. We'll see how it works in the future.

Social Anxiety Disorder
Oh boy does this make life suck. It's very unpredictable for me. Sometimes I'm fine walking through a crowd of people, like at the campus or even a concert. Other times, I'm completely unable to do it. I have panic attacks that leave me unable to talk, unable to walk, shaking and hyperventilating.

I take Ativan for it. I had actually stopped taking it for a bit, but then I started getting new panic attacks. I would get this sinking feeling around where my heart was and my mind would tell me "nothing will every be okay" "you'll never be able to do anything you want to do" "you're better off dead, everyone would be happy if you were" and I couldn't take it so I started the Ativan back up (both the going off and going back on was done and watched by doctors, not my own doing).

It's still back and forth. Unfortunately, I think it is something that runs through my family, so its not something they can cure me of. I just have to find a way to deal with it... if that's possible. But I work every day at it, and sometimes I surprise myself.

Depression
This is something that has such a long story behind it. I'm not even sure 20 posts here would explain it all. I was abused out in Utah, a lot. Physical abuse from my father, sexual abuse from a boy across the street, and emotionally abused from my ex step mother. When I hit adolescence, it all just finally made sense what happened. My mind processed it, and I couldn't handle it. I tried committing suicide multiple times. It's really a wonder how I'm still alive.

I also started cutting myself. That is something I still struggle with. And I still struggle with wanting to kill myself sometimes. I don't know how to change that. We're heading on to 12 years of therapy and treatment and sometimes I wonder what the hell we've been doing, but I do know that I am better than I was, and I have to keep hoping I'll keep getting better and better until there is no more "better than I was".

Anemia
It makes me tired, and really pale (sick pale), but it isn't the worst of everything I have. I should be taking iron pills, but they make me sick. So I just deal with it.

Protein in urine
They found this in a urine test looking for an infection. It has to do with how the kidneys are filtering things. I've seen a nephrologist (specialist) and he said that all the tests came back fine so for right now we'll just wait and see what happens. I have to do another 24-hour urine jug in July to see how much protein there is (is there is any) and then we'll go from there.

Irritable Bowel Syndrome
So basically my large intestine hates me. Instead of just doing what it is supposed to do, it sends horrible cramps that can leave me completely immobile, give me diarrhea, constipation (which is so much fun when you need to poop to make the cramps stop!), and I have internal hemorrhoids (yay!).

I'm not allowed
-alcohol (medications and heart)
-caffiene (migraines and heart)
-to stand in one spot for more than 10 minutes

And I have to
-add lots of potassium to my diet
-and lots of sodium (yummy salt. This I'm okay with!)



If you managed to read through all of that, congratulations, you must have been very bored. Glad to have been able to help you pass some time. The other posts won't be like this. I just felt it necessary to get the introduction out of the way since it's a long one.

So, until next time my little Tylenol fiends.
-Emi