So tonight 2010 flies away and 2011 comes to take it's place, so I thought I would review what 2010 was like for me.
January: Dr. Pellegrino dropped me as a patient because I wasn't getting better fast enough to his liking and I would hurt his numbers. He told me all I wanted was the money from the disability. He still hasn't given me my medical charts.
February: Had to wear a heart (halter) monitor for the first time. Found out I was allergic to the glue in the electrodes. They found cancer in Asher's grandma's intestines.
March: Went off all of my medications for a test on whether my antibodies were attacking my muscles. Found no evidence of such. Had the exam to see whether I would be put in a chronic pain program at Cleveland Clinic. The Doctor decided that yes, I definitely needed it. My friend (though we hadn't spoken for some time after a fight) died.
April: Saw Avenue Q in person! Dropped my ASL class too late, and the registrar hated me. I lost my appeal to them and failed the class. Asher's grandma passed away. :(
May: I decided to learn how to knit, which I still don't actually know how to do yet.
June: I went in to the Chronic Pain Rehabilitation Program (at Cleveland Clinic). Was put back on Seroquel, but this for sleep. Stop using Afrin. Asher proposed to me!!!!
July: Cut my hair after YEARS of it being long! 10 inches off! We began splitting up Asher's grandma's things. We'll have a lot of furniture from her when we get our own place.
August: They found protein in my urine and set me up with a kidney specialist (nephrologist).
September: Saw the nephrologist for the first time. The vampires took my blood for tests. Also got a ultasound of the kidneys done. Started taking ballet for physical therapy reasons. Had some bad reactions/side effects from the Seroquel.
October: Had our engagement party!
November: My grandma Dot, who was like a mom to me, died. I had to travel out to Utah for the funeral. My uncle Kurt told me he hoped that her dying would be something that would finally bring my father and I together. Pain was at near hospital levels during this time. Stopped taking the Seroquel because I couldn't handle the severe side effects.
December: Turned 24. Quit school after a semester of mostly A's and 1 B. Started taking small doses of Abilify. I've been much more productive since then: writing, painting, drawing, working on our Save the Dates. Brought my wedding ring, and got a new camera.
And started this wonderful blog which I hope helps others while helping me.
Over all, there was a lot of bad and a lot of good. I'm hoping 2011 proves to be better, though.
Happy new year guys. Hope it brings nothing but happiness.
Friday, December 31, 2010
Thursday, December 30, 2010
It's like someone is stabbing my brain
These migraines are driving me crazy. Ever since my period started, it's just been migraine after migraine after migraine. Sometimes the medicine works, sometimes it doesn't. And it's changed so now I have to make sure I eat when I take the pills or else all they do is make the migraine worse.
I see my neurologist on Monday, so I'm going to tell him about that. The problem is that I don't have normal migraines. I have what is called transformed migraines. The way my neurologist explained it: think of the migraines like they are a light switch that has an on and an off. Normally, you take a pill and it puts it in the off position. But I was taking things like Imitrex and Excedrin so often that the switch ended up breaking. Now it's always in the on position, and all the pills do is numb the pain for a while and then it comes back with a rebound headache.
So here's my rule guys: don't take a medicine more than 10 times a month. You don't want to get to where I was, trust me. I was having migraines every single day. I was lucky to get a day off a week. And the pills weren't working. It was absolutely horrible.
So what does this mean? There are a lot of migraine medicines I can't take because they are similar to the pills that got to me that bad place. It's possible I just have to deal with these pills and make sure I eat and pray it doesn't make it worse.
I also need to call my gynecologist and get a stronger dose of hormones during my period. We're hoping that helps the migraines lessen, but this last one was a very low dose and he told me if it didn't work to call him so we could try a higher dose.
Either way, thanks to my period, I had 12 migraines this month. Which means I can't afford to have another one this month.
I see my neurologist on Monday, so I'm going to tell him about that. The problem is that I don't have normal migraines. I have what is called transformed migraines. The way my neurologist explained it: think of the migraines like they are a light switch that has an on and an off. Normally, you take a pill and it puts it in the off position. But I was taking things like Imitrex and Excedrin so often that the switch ended up breaking. Now it's always in the on position, and all the pills do is numb the pain for a while and then it comes back with a rebound headache.
So here's my rule guys: don't take a medicine more than 10 times a month. You don't want to get to where I was, trust me. I was having migraines every single day. I was lucky to get a day off a week. And the pills weren't working. It was absolutely horrible.
So what does this mean? There are a lot of migraine medicines I can't take because they are similar to the pills that got to me that bad place. It's possible I just have to deal with these pills and make sure I eat and pray it doesn't make it worse.
I also need to call my gynecologist and get a stronger dose of hormones during my period. We're hoping that helps the migraines lessen, but this last one was a very low dose and he told me if it didn't work to call him so we could try a higher dose.
Either way, thanks to my period, I had 12 migraines this month. Which means I can't afford to have another one this month.
Wednesday, December 29, 2010
School and chronic pain
All of my illnesses make school really hard. It's bad enough that I stress out normally due to school, but add on that I miss a lot because of migraines that make me unable to drive (I commute 30 minutes) and pain in my legs that make me unable to walk. Or I'm so nauseous that moving is a bad idea or I might throw up. I also catch colds pretty easily and it almost always turns into a sinus infection.
And now add on that we can't afford it and my grants just don't give me enough, and mom doesn't want to do anymore student loans (I have so many).
And all of this is just one reason I'm so glad we're getting the new health care. Now I can take some time off (though I'm pretty I won't go back) without fear of losing my health insurance. I need to concentrate on trying to get better, and getting my disability which I have a hearing for in February.
Eventually I'll look into online schools. But doing it right now just isn't a good idea. All the stress of school is making me worse and we need to bring my stress levels down as soon as possible. It's dangerous territory because I get stressed out and not only does it make me sicker, it makes me suicidal.
So I quit school.
And I have to tell you guys, it makes me feel like a failure. I always expected to get my degree in psychology and go on to get my masters and then become a counselor. And then I was thinking of changing over to English with a writing minor. It's the language that has me screwed. My brain just can't retain it.
I wanted to quit. I wanted to just work on my books. So I'm happy, but I'm also sad, and kind of mad. And I know when my father finds out, he's going to be mad. Though he really doesn't have much say since he didn't really pay for college (he helped with the first 2 semesters). I feel like the little girl that was always afraid of him again because I can't bring myself to call him. I'm afraid of what will happen.
I just need to focus on me and my writing right now. That's what's important.
And now add on that we can't afford it and my grants just don't give me enough, and mom doesn't want to do anymore student loans (I have so many).
And all of this is just one reason I'm so glad we're getting the new health care. Now I can take some time off (though I'm pretty I won't go back) without fear of losing my health insurance. I need to concentrate on trying to get better, and getting my disability which I have a hearing for in February.
Eventually I'll look into online schools. But doing it right now just isn't a good idea. All the stress of school is making me worse and we need to bring my stress levels down as soon as possible. It's dangerous territory because I get stressed out and not only does it make me sicker, it makes me suicidal.
So I quit school.
And I have to tell you guys, it makes me feel like a failure. I always expected to get my degree in psychology and go on to get my masters and then become a counselor. And then I was thinking of changing over to English with a writing minor. It's the language that has me screwed. My brain just can't retain it.
I wanted to quit. I wanted to just work on my books. So I'm happy, but I'm also sad, and kind of mad. And I know when my father finds out, he's going to be mad. Though he really doesn't have much say since he didn't really pay for college (he helped with the first 2 semesters). I feel like the little girl that was always afraid of him again because I can't bring myself to call him. I'm afraid of what will happen.
I just need to focus on me and my writing right now. That's what's important.
Tuesday, December 28, 2010
The joy of kitties
I am a firm believer that pets are good for your health. It wasn't what was in my mind when I got my cats, but they prove it every single day. I could be really, really sick, barely reacting to anything because movement is a bad idea, and I can't help but smile when my cats come over to cuddle with me. They want to make me feel better, I think.
There are days that everything seems so dark and all I want to do is kill myself, and then I look at my cats and I can't do that to them. There are also days where I just lie on my bed and cry, and my cats (especially Rhapsody) will come up and rub against my forehead, try to groom me, anything to cheer me up.
I don't know where I would be without them. Definitely a lot worse off; perhaps even dead. It's hard to tell. But I know that they are part of what makes me wake up every morning. I know they are there to love me, and I love them. And I feel better when they are there.
There are days that everything seems so dark and all I want to do is kill myself, and then I look at my cats and I can't do that to them. There are also days where I just lie on my bed and cry, and my cats (especially Rhapsody) will come up and rub against my forehead, try to groom me, anything to cheer me up.
I don't know where I would be without them. Definitely a lot worse off; perhaps even dead. It's hard to tell. But I know that they are part of what makes me wake up every morning. I know they are there to love me, and I love them. And I feel better when they are there.
Monday, December 27, 2010
The use of Christmas money
Normally when I get money for my birthday and Christmas, I go on a huge shopping spree for myself. And that's all well and good when it's just me and we don't have things we are working towards getting.
I feel bad because I can't work. Asher understands my limitations and why I wouldn't be hired. It's been an ongoing battle in my mind trying to come to terms with this fact, but it's hard. I feel like I don't do anything worthwhile sometimes. He's gaining the money and what am I doing? Working on my book. But if I can get published, if I do well, then it makes up for something, right?
I told him last night how I feel bad about the wedding. He's working hard to save up for it, and I don't feel like I'm contributing. But last night I decided I would use at least some of my Christmas money for the wedding. So I got my wedding ring ($150) and the other chalice for him to use when we toast. His Aunt Dolly and his Mamaw told me to get myself something nice when they gave me the money, and I think they'll both be very happy to know it went to my wedding ring.
I'm unsure of what I'm going to do now. I still have money left over, and I could get a little bit more, but I'm not sure. Or it could go to our swords for the ceremony. Or it could go to my artistic endeavors right now. Get some more oil paints for the cat paintings.
Options, options.
I feel bad because I can't work. Asher understands my limitations and why I wouldn't be hired. It's been an ongoing battle in my mind trying to come to terms with this fact, but it's hard. I feel like I don't do anything worthwhile sometimes. He's gaining the money and what am I doing? Working on my book. But if I can get published, if I do well, then it makes up for something, right?
I told him last night how I feel bad about the wedding. He's working hard to save up for it, and I don't feel like I'm contributing. But last night I decided I would use at least some of my Christmas money for the wedding. So I got my wedding ring ($150) and the other chalice for him to use when we toast. His Aunt Dolly and his Mamaw told me to get myself something nice when they gave me the money, and I think they'll both be very happy to know it went to my wedding ring.
I'm unsure of what I'm going to do now. I still have money left over, and I could get a little bit more, but I'm not sure. Or it could go to our swords for the ceremony. Or it could go to my artistic endeavors right now. Get some more oil paints for the cat paintings.
Options, options.
Sunday, December 26, 2010
Holidays bring out the worst
I've noticed that parties, especially on the holidays, seem to show a lot of true colors. It's ridiculous what people think is acceptable to do in a group setting.
We went to 4 homes this year: my future mother-in-law's, my mom's, my future uncle-in-law's, and my future father-in-law's. 3 of those visits were just fine; in fact, they were very good. But the other? Not so much. Asher's mom and step dad really boggle my mind sometimes.
To start with, his step father decided it would be a good idea to tell a story about a man who stole his car. It was a fine little story up until he said how he had asked the officer to let him in with that *n-word* for just five minutes. Asher saw my face when he said the word and I can tell you it was a mixture of anger and shock. After the story, Asher said very loudly "Go racism!" and got a very, very dirty look.
I guess it was a tradition every year that Asher's grandfather would read "The night before Christmas" each year. I didn't know this because they didn't do it last year, and according to Asher they hadn't done it for a couple of years (probably since he died). This year his mom had his step father do it. Asher was ready to flip. He was so mad.
And then I noticed that his mom had 2 Swarovski ornaments on her tree this year before I gave her the new one. I know she only had 1 last year, so the other must be his grandma's (who died this year). I had been wondering where it was when we were going through everything, and this really pisses me off. It should go to Asher, not her. Or she should have asked.
Then add in all these new things we learned from family, like that she is already telling some of the other kids what they should take of Aunt Dolly's when she dies (his grandma's sister, and Asher's god-mother). SHE'S NOT DEAD YET. STOP IT.
And here I thought I'd have to worry most about my health acting up. Nope. Family is so much worse than chronic pain sometimes.
We went to 4 homes this year: my future mother-in-law's, my mom's, my future uncle-in-law's, and my future father-in-law's. 3 of those visits were just fine; in fact, they were very good. But the other? Not so much. Asher's mom and step dad really boggle my mind sometimes.
To start with, his step father decided it would be a good idea to tell a story about a man who stole his car. It was a fine little story up until he said how he had asked the officer to let him in with that *n-word* for just five minutes. Asher saw my face when he said the word and I can tell you it was a mixture of anger and shock. After the story, Asher said very loudly "Go racism!" and got a very, very dirty look.
I guess it was a tradition every year that Asher's grandfather would read "The night before Christmas" each year. I didn't know this because they didn't do it last year, and according to Asher they hadn't done it for a couple of years (probably since he died). This year his mom had his step father do it. Asher was ready to flip. He was so mad.
And then I noticed that his mom had 2 Swarovski ornaments on her tree this year before I gave her the new one. I know she only had 1 last year, so the other must be his grandma's (who died this year). I had been wondering where it was when we were going through everything, and this really pisses me off. It should go to Asher, not her. Or she should have asked.
Then add in all these new things we learned from family, like that she is already telling some of the other kids what they should take of Aunt Dolly's when she dies (his grandma's sister, and Asher's god-mother). SHE'S NOT DEAD YET. STOP IT.
And here I thought I'd have to worry most about my health acting up. Nope. Family is so much worse than chronic pain sometimes.
Friday, December 24, 2010
The trouble of Christmas
The holiday season as a pain patient is always very trying. For one, there is the stress of trying to get shopping done, cooking, trying to figure out what the plans are for the days, and so on. And for someone with IBS, the food is worrisome.
I don't know what foods cause my IBS to act up because it's never consistent. I'm not able to avoid the things that make it happen because I don't know what they are. Last night we had homemade pizza, which was amazing, and not even an hour later I was lying on the bed holding my stomach because it felt like Freddy Kruger was in my large intestine and stabbing me multiple times over with those claws of his.
So tonight we go to his mom's house, and of course there will be food. I don't want a replay of last night. I spend a lot of time trying to hide it when I'm sick around most people. The only ones I don't hide it from are Asher and my mom. I hide it because most people don't understand.
"Take a tums."
Yeah, it's not that easy.
Asher's mom is one of those people who just wouldn't understand. Sometimes I wonder how she got her nursing degree because she knows nothing about illnesses.
Here's to hoping Imodium is enough to keep it under control tonight.
And may everyone have a wonderful Christmas eve.
I don't know what foods cause my IBS to act up because it's never consistent. I'm not able to avoid the things that make it happen because I don't know what they are. Last night we had homemade pizza, which was amazing, and not even an hour later I was lying on the bed holding my stomach because it felt like Freddy Kruger was in my large intestine and stabbing me multiple times over with those claws of his.
So tonight we go to his mom's house, and of course there will be food. I don't want a replay of last night. I spend a lot of time trying to hide it when I'm sick around most people. The only ones I don't hide it from are Asher and my mom. I hide it because most people don't understand.
"Take a tums."
Yeah, it's not that easy.
Asher's mom is one of those people who just wouldn't understand. Sometimes I wonder how she got her nursing degree because she knows nothing about illnesses.
Here's to hoping Imodium is enough to keep it under control tonight.
And may everyone have a wonderful Christmas eve.
Thursday, December 23, 2010
Cat torture is always good for the soul
So I told my fiance that I wanted to have a family photo for Christmas, and we did just that tonight. So here is our little family. Asher is holding Bug and I'm holding Rhapsody. Rhapsody wasn't too impressed by the collars, but she'll get over it.
We're a cute little family.
We're a cute little family.
Wednesday, December 22, 2010
Censorship?
I'll probably mention this many times because I have a feeling it's going to end up being a problem for some people, but let me say this now: this is one blog where I am not going to censor myself in.
I think many people who have gone through forms of abuse learns they have to censor what they say and do in order to protect themselves and I'm one who has done it for a long time. I know the people I have to avoid subjects with. I know the people I have to lock out of certain conversations because of how it will end. I've done it for years.
My problem with doing it here is that what has happened to me in the past, and the thoughts I have now (whether people want to think they are right or not), has a lot to do with my physical health as well as my mental health. And if I censor all of that here, then what truth am I really showing? I'd only be showing one or two sides of the whole story.
You don't want to hear it? Don't read it.
I think many people who have gone through forms of abuse learns they have to censor what they say and do in order to protect themselves and I'm one who has done it for a long time. I know the people I have to avoid subjects with. I know the people I have to lock out of certain conversations because of how it will end. I've done it for years.
My problem with doing it here is that what has happened to me in the past, and the thoughts I have now (whether people want to think they are right or not), has a lot to do with my physical health as well as my mental health. And if I censor all of that here, then what truth am I really showing? I'd only be showing one or two sides of the whole story.
You don't want to hear it? Don't read it.
Insomnia is awesome
Sometimes it feels like the insomnia is so much worse than the actual pain itself. I've been on I don't even know how many sleeping pills throughout my life. But they only do so much. Right now they get me to sleep, which I have to admit is a huge hurdle, but it does nothing to keep me asleep and I find myself awake much too often for comfort.
It's even worse if I know I have to wake up for something because I just lay there. I know I'm awake. I know where I am. I'm not sure what time it is though. I could check, but then it will bother me. What if I have to wake up in a half an hour? There's no way I'm going back to sleep then. But what if I still have a couple of hours? I could relax a little and get back to sleep.
It's like a constant battle.
I'm not that tired now, but I know later today I'll be exhausted and want to sleep, but what good does that do to my sleeping later?
Insomnia, old friend, I think we need to take a break from each other.
It's even worse if I know I have to wake up for something because I just lay there. I know I'm awake. I know where I am. I'm not sure what time it is though. I could check, but then it will bother me. What if I have to wake up in a half an hour? There's no way I'm going back to sleep then. But what if I still have a couple of hours? I could relax a little and get back to sleep.
It's like a constant battle.
I'm not that tired now, but I know later today I'll be exhausted and want to sleep, but what good does that do to my sleeping later?
Insomnia, old friend, I think we need to take a break from each other.
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
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
Subscribe to:
Posts (Atom)