On The Lupie Side Of The Street

I feel that I need to start exercising again. It's going to be so hard because I'm completely out of shape. Plus it's hard to get the motivation when everything hurts! I'd like to start walking, basically because it's low impact on my joints. It would probably be good for me to get some fresh air, but not the sun shine. Sunlight is my enemy but that's why there is sunscreen. Exercise is also sort of an enemy for me, even the smallest exertion can make my heart jump up. I'll physically be OK as long as I can keep my pulse below 180 bpm. I'll never be able to do the high powered fat burning calorie killing workouts, but I can do stuff to increase my flexibility, along with my muscle and joint health.

My neighborhood is pretty safe to walk around, would I want to walk around at night? No. Would I feel fine walking in broad daylight? Yes, I would. I would get started with a routine right here and now but unfortunately I can't. First of all, I have sneakers but they are meant for exercising, they are great for walking around a mall, but that's about it. Secondly, with my heart being as erratic as it is, I should probably invest in a heart rate monitor watch. Prices have come down considerably over the years, you can now get a strapless one for between $50-$60. Then I would know what my pulse is throughout my workout without having to take it myself. I would also know when I would need to "Stop and let it drop." Most people aim for a high target heart rate while working out. I'm aiming for a moderate, controlled rate, I don't want to drop dead while walking.

The third thing is something I don't really need but want. Every day I try and fix my old i-pod mini, I try charging it, restarting it, toggling the hold switch, pressing different buttons. Nothing brings it back to life, I'm doing all the things that used to bring it back before. I think it's too far gone. I would love to have another i-pod but this past month has been too expensive. I feel like there is no room for anything extra and I feel so horrible that I've been such a high maintenance person here lately. I shouldn't even be worried about exercising or an i-pod. I need to get another car because my parents sold my old one a while back. Once I have a car, I can get a job, once I get a job, I can make money to pay off the car. When the car gets paid off, then my medical expenses will get paid off and by then there will be new ones to take care of. Of course when that gets settled, I need to save money for the future medical expenses, doctors visits, medication, hospital stays, and possible surgeries.

Having lupus means you have to plan for the expected, I'm expecting at some point my kidneys will go and I will need a transplant. I'm expecting that I will need joint replacement surgeries as well. I'll also have huge expenses because lupus just loves to attack my mouth. And goodness knows what is going to happen to my digestive tract in the future. I was catching up on some Grey's Anatomy yesterday and they had three patients, who were all siblings, who had a high chance of developing a rare form of cancer that had killed much of their family. Part of the procedure to prevent them from developing this cancer was to remove their stomach completely. I had no idea that could be done. I've joked about getting it done for years! Or at least having my stomach replaced with a heavy duty Ziploc freezer bag!

I know it sounds like I'm "wallowing in self pity" as my Granny says, but I'm not. I'm just trying to think of everything that has to get done and what needs to get done first. I need to get my strength and energy levels up before I get a job. I need to find a job at a place that is small and can provide me with flexible hours. Everyone keeps asking me about me going back to school but I don't have anyone running up to me with a check saying "Here's your tuition!" I know there are loans but I will probably end up in debt up to my eyeballs because of my health. So I don't want to get an early start in debt by getting loans for college. I am also well aware that there are people who are worse off than I am, who am I to complain? I shouldn't be complaining, I have a roof over my head and all my medicines. So maybe I am wallowing in self pity, I just need to shut up and move on. I've come to the conclusion that I am the only one who can make it work for me. I just need someone to give me a small break so I can make it work.

For those of you who don't understand Dutch, the title is "It has gone kaputt!" Kaput basically means death, but not like human. For example, this evening I was making a gigantic pot of tea so I could make my herbal ice tea. I noticed the kettle was leaking from underneath the handle. This troubled my Mother so, she has never had to buy a tea kettle before. The one we have was a hand me down, my Granny received it as a gift long ago, then she gave it to my Mother. It's Corningwear and she loves it because of the German print on the sides. When I saw the "I'm going to fix it" wheels turning in her head, I told her it couldn't be fixed with gorilla glue or duct tape. Mother looked awfully crest fallen.

Yesterday I was thinking to myself that things were going fairly good for me medically. Silly me spoke too soon! I met with my new Primary Care Physician this morning and it feels like a good fit. She wanted me to get one of my prescriptions switched over to another doctor. I just called CVS and they got the request and filled my script! I was so worried that the other doctor wouldn't fill it for some odd reason. But based on my medical history, it's a vital pill, it allows me to eat, it calms me down, and it can help me to sleep. It's a miracle pill for me. But I have a lot of miracle pills in my stash.

Anyways, once I got home from my appointment, I started to feel a tad bit cruddy. My bp was 90/50 at the doctor's office. When I got home situated, it had dropped to 90/40. I was freezing cold, my temperature was going between 96 and 96.5 degrees Fahrenheit. My normal temperature is around 99 degrees Fahrenheit so this was a bit on the low side for me. My resting pulse would jump from 80 bpm to 140 bpm which is a common occurrence for someone with inappropriate sinus tachycardia. Needless to say, I was feeling quiet pathetic and my body was having a bit of a hissy fit. It had to prove how dissatisfied it was with me by making me pass out twice. Luckily it happened in my room, when I stood up, so there wasn't much for me to hit my head on and I landed on carpet. I can't tell if I passed out because of the low blood pressure or from the tachycardia. IST can cause syncope but so can blood pressure problems. Another mystery of my life!

I'm feeling better but still feel a little on the wonky side. I've got more color in my face, I was looking a bit jaundiced earlier. Again, it could be a side effect from the diltiazem or it might mean lupus starting to wreck havoc. I'm not looking jaundiced anymore so that's a good sign. Plus I've got some color back in my face because earlier I was looking pale as a ghost. I'm hoping tomorrow will be better.

I didn't get around to doing the dishes like my Dad wanted me to do. I was afraid he was going to be mad at me but I left him a note. I explained that I was sick but I didn't expect him to understand. He tends understands for a couple of days, then he forgets, and he goes back to being inconsiderate. Mom says he is starting to get over the weekend, which is good, because he isn't acting like it. When I came downstairs to make my oatmeal this morning, he didn't even say hello to me when he came in the kitchen. He pretended I wasn't even there. I didn't bother speaking to him because he usually only mumbles under his breath to me.

Well I'm watching an awesome episode of House and I'm exhausted. The past few days have been rough and that has worn me down to the core. I just want to thank everyone who reads this, in some way, each of you has supported me. Y'all rock!

I don't normally talk about my family because I am a fiercely private person. But today, I have been pushed to my limit. The past few years have been nothing but a battle between my father and I. It seems like no matter what I do, no matter how hard I try, it is never good enough for him. I try to be a good daughter, I am mostly always considerate and I attempt to be caring. But it is hard to be caring towards a man who shows no hint of happiness towards you. It's hard to feel compassion for a person who only looks at you with the coldest of eyes. My Mom frequently reminds me that "He is the only Dad I have." I'm well aware of that but yet it doesn't inspire much within my heart.

I will always love my Dad, deep inside my heart, for one reason and one reason only, because it is the right thing to do. I do not like him very much, how could I? How could I like a man who thinks I'm worthless? How could I like someone who dislikes me so much? How could I like a person who has instilled fear in me? I'm terrified of his outbursts, I despise being yelled and I especially hate his names for me. Honestly, I don't think he knows how much his words hurt me. He is one of the few people who is capable of making me cry, and I am not a crier. His words stab at my heart, his outbursts shake me to my core.

Eleanor Roosevelt said "No one can make you feel inferior without your permission." Well, my Dad has mastered that art. He has the ability to make me feel so low, worthless, and terrible about myself. It's as if in a matter of minutes he has the ability to brainwash me. When he gets mad at me, I feel like a terrible person when it should be him who feels terrible. I do everything in my power to never make him upset at me. I walk on egg shells every single day. If he is doing something, I am careful not to disturb him. If he needs help with something, I try to do it in a reasonable amount of time. I'm courteous and amicable but I try to keep the conversation to a minimum. I know when he sees me, it starts a ember of dislike towards me. He has made it perfectly clear that he does not like having me around. Despite those things, I try to be a good daughter.

I don't think he understands what it's like to live with a chronic illness either. My Mom understands, she has lived with people who have been constantly sick. But my Dad, he doesn't get it, he will never understand what it is like to be in my shoes. He will never have to find the strength within himself to keep going when the odds are stacked against him. I also hope that he never, ever gets sick in the way that I do. But if he does, I hope he does not have his family persecute him in the ways I have experienced. I could never treat him in the way he has treated me. Maybe it's because I have more respect for him than he has for me? It doesn't matter how much I dislike a person, I will always try to respect them.

Unfortunately right now, I am at the end of my wits. I have cried, cried, and cried today. I'm not talking about a tiny tear, I'm speaking of giant sobs. Not only have my Dad's words beaten me up, but they keep replaying in my head. I will never understand how a man can show more compassion to the students at his school than he does for his own daughter. I will never understand how someone can hate their own daughter so much. I will never understand how he makes it seem like he is the perfect Dad when he is out in public. It hurts me so much to know that I have disappointed him so much over things that I had no control over. It hurts me more seeing him every day, knowing that he cannot stand to have me in his presence.

I've got too many financial troubles to move out now. Stupid medical expenses. But once I get myself repaired, once I get some money saved in the bank for emergency medical expenses, I'm moving out. It will probably take me a couple of years, that means I get to live in hell for the time being. But eventually I will be on my own, I won't have to tolerate my Dad's hateful look towards me. I will be on my own and he will never, ever be allowed to get mad at me in the way he does. When I have my own place again, I will feel comfortable in it. I will never be made to feel unwelcome ever again.

Oh and I have to say through all of this, my Mom has been a saint. I feel as if she gets stuck in the middle but that's what happens in situations like these.

Today has been a tad bit on the frustrating side. I just needed to get a hold of my labs that I got done a few weeks back. My primary care physician wanted me to come in this coming week. She also had apparently made some notes about some more supplements I should be taking. Here's what gets my goat... I'm all for nutritional supplements, but there is a key word "supplements." They are the whole deal, they help to compliment your body and the life style you lead. Can they fix every ailment? No. Will they cure a bacterial infection? No. Might they be able to lower my resting pulse? Probably not. Can a supplement force my stomach to digest food? Not in this lifetime. But I'm all for a little bit of "natural" assistance every now and again.

Maybe I'm old fashioned but I prefer those chemically complex pills that come in the orange bottle. First of all, those little pills are regulated by the FDA. Sometimes the FDA does screw up, but more often than not they do a fairly decent job with prescription medications. Plus you can't blame everything on the FDA, I always research a medication before I take it. That way I'm completely aware of all of the benefits and risks that each medication has. Secondly, those little pills in the cute orange bottles tend to be partially covered by insurance. It's better for my pocket book if it's a generic medication too! Nutritional supplements are not covered by insurance and it's extremely frustrating when someone keeps trying to force their brand on me. Let me decide which brand is right for me, allow me to do my research please.

I'm sorry but herbal supplements are not going to drastically change my blood work. Most of the issues that my body has can basically only be controlled with prescription medication. Carefully timed doses keep me from getting sicker than I already am. I do have my flares where nothing seems to help, but without my prescriptions I would be a heck of a lot sicker. Another thing, people say "Oh herbal supplements are all natural, that means they are good for you!" Would you go outside, stick your face in the ground, and start chewing on some grass like a cow? Seriously? I don't think you would. The grass in your back yard is all natural though, but it's probably not very good for you. Bugs are all natural, would you chew a grass hopper instead of taking some acetaminophen for your headache? I doubt it.

People forget that the lovely medications in the orange bottles are not just some recent invention. Most medications have been researched for many, many years before they actually hit the market. They are tested, tested, and tested again to make sure that they work in the way they are supposed to. It's not like the pharmaceutical companies came up with new medications last week and put them on the market this week. All natural herbal medications are not regulated, the labels can say whatever they want, they could leave out an ingredient if they wanted too! They could over embellish their "facts" claiming that their supplement can do something that it actually cannot. And if you actually read the label it says something along the lines of "This supplement is not regulated by the FDA." I do trust certain brands for supplements though. My rule of thumb is if you can only order it from that company's website, it's probably a not worth it.

I also cannot stress enough to inform your doctor of every single medication you take, whether it is prescription, over the counter, or an all natural supplement. There is always a chance for a medical reaction. Sometimes it may be as simple as reducing the effectiveness of a medication. But it could also cause a life threatening reaction and without the complete list of medications, the doctors could be missing an important clue. You may also be thinking that your pharmacist checks for reactions. They check for reactions based on the list of prescription medications you take.

Remember, you have to be your own advocate and sometimes that means you have to buckle down and do some research. It's your health and you are the first person in charge, doctors come second. You know your body better than anyone else ever will. And if you don't know your body, get to know it. Listen to what it tells you and you will be better off for it. Pay attention to those feelings you get when something is and isn't right. I've gotten so good at paying attention to my body that I can tell what is going to happen 30 minutes before it happens. It's nice to have that reaction time buffer!

Oh and my results from my upper GI endoscopy biopsy came back today. I'm in the clear, go me!

I'm sorry I didn't post yesterday, I've been too busy eating. Yes, eating. It is like I have fallen in love with food all over again. Everything sounds good, looks good, and tastes even better. It's as if my taste buds are alive again! My stomach is actually allowing me to digest food. I don't feel like I have a lead brick in my stomach for three days. I feel hungry in a matter of hours after I eat. For those of you who don't understand, I haven't felt hungry in so long that I forgot what hunger felt like. That's how crazy my stomach has acted in the past.

Today was a good day, a very good day. I got to hang out with an awesome friend, we went to Ashland Coffee and Tea. It's one of our favorite hang outs, here's why. It's hardly ever crowded on a week day. The prices are decent, they have a great selection of teas, they have foods that are "safe" for me to eat, and they have free internet. Today I did an art project with a friend. She is moving into a new house and I thought she could use some art for her new digs. So we painted this crazy flower picture together. I think it turned out fairly well considering my flowers look like something out of Dr. Seuss. I'm not too good at being realistic when it comes to art. We also had a fabulous time listening in on people's conversations and quietly whispering about what they were saying. Yes, that's wrong, but come on, it's just too darn fun to pass up!

This evening I was catching up on some ER episodes from the 15th and final season. It's gotten so romantic and mushy, I'm not a romantic person. But watching stuff where people are in love, it makes me want to be in love too. It makes me wish I could find that special someone. But the realistic side of me soon kicks in and I realize I will never, ever be able to be in a relationship.

First of all, no one really understands lupus, I have a hard time understanding it. If I have a hard time comprehending what it does to my body, how am I supposed to make someone else understand? Is this someone going to be able to tolerate me getting sick? Will they be there to hold my hand when I'm so nauseated I cannot move from the bathroom floor? Will they not panic when my heart races to 150 bpm and I feel dizzy, out of breath, and my chest is going to just crumble in my hands? How will they manage on one of my bad days when I can hardly take care of myself?

Don't even get me started on the thought of insurance and the prospect of children. I have no idea what I will do for insurance once I turn 25. And children, well, whoever I'm with can throw that idea right out the window. I'll never be able to adopt either, which is what I would love to do, but with my medical history? A judge would have to be out of their mind to grant me the rights to adopt a child. I would never adopt if I wasn't physically and financially stable. I want to adopt a teenager, someone who is about to be shoved out of the system. I want to get them back in school, I want them to have a stable home life. I want them to be able to have friends, go to the movies, hang out at the mall. I want to expose them to the arts, and not just what we think is "art." Just because it doesn't hang in a museum doesn't mean it's not art. Anything can be art if you look at it with an open mind. I want to give them the opportunity to go to college and succeed in life. Most of all, I want to make sure they know they are loved and no matter what, they will always have me in their life. Will any of that happen? Realistically? No.

So yes, I wish it could all be simpler, but it's not. I don't think I'll ever truly be able to lead a completely normal life. I mean how normal is it to have to brief your friends on what to do in case of an emergency? It's not very normal to have your entire medical history, a list of all your doctors, and every single medication you take loaded onto your cell phone.

I'm 23 years old and instead of running around with a job, I'm at home calling doctors and making copies of records. I'm hoping to get back into the work world soon. I've just got to work with a place that will be somewhat understanding and flexible. I don't want to work for a large company either, they are less flexible and I will be another dispensable employee. I don't want disability because I'm capable of doing good work, I've just got to find someone willing to give me a chance. That's what frustrates me, I'm not looking for a hand out, I'm not looking for someone to hand me something I don't deserve. I just need someone to help me get on my feet, just a little lift, I'm willing to work for it. I want to work for it, I need to work for it, I need to know that I can be a good person, a productive member of society. I need to know that this illness won't hold me back in all aspects of my life, that I can still be part of the person I dream to be.

Here's a photo of the crazy art I did with my friend today. I never said we were good, but we surely have fun doing it!

Today I went and saw my cardiac electrophysiologist. Well, I felt like I was never going to see him. I kid you not, I was in the exam room for 45 minutes before he came in. I was falling asleep sitting up because I was so tired of waiting. Luckily, he was much nicer than my old cardiologist. I think my old cardiologist thought he knew everything and because of that, since he couldn't find anything wrong, that I was crazy. Well guess what people? I wasn't crazy! I'm the proud owner of inappropriate sinus tachycardia. It's not life threatening, under normal circumstances I will not drop dead of a heart attack. All it basically means is that my heart is going to beat faster than a normal heart. In order to have it, you have to meet the following criteria:

• All other forms of sinus tachycardia have to be eliminated.
• Supra ventricular tachycardia (SVT) has to be eliminated.
• A resting sinus tachycardia tends to be present.
• A normal P wave is observed.
• Inappropriate heart rate with minimal exertion.
• Hypotension tends to occur.
• Fainting spells.
• The mean heart rate for 24 hours must at least be 95 bpm.

You know the other week when I was in the hospital and they gave me beta blockers? And you know how they sent me home and I ended up right back in the hospital? You want to know why that happened? Because people with IST tend to be immune to beta blockers. IST is so rare that most doctors have never even heard of it. Even my first cardiologist didn't recognize the symptoms. I suppose it pays to go see an cardiac electrophysiologist!

The good news is, I'm not going to die. The bad news is, there is not much they can do for it. If ever it gets to be unbearable, I can have a pace maker put in. They don't like to do it for IST, but it can be done. I can exercise, but I can't go out and run a 5k, I mean unless I feel like reaching 180 bpm? I'll be living with the chest pain, shortness of breath, dizzy feeling for as long as I live. Goody, goody gum drops! It stinks that there is nothing much that can be done but at least I don't have a crazy heart defect that requires surgery. Thank goodness for ativan! So yes, my heart is technically fine, it's just a little overly ambitious when it comes to beating. I've just got to keep my life on the low key side. I suppose running for President is officially out of the question.

On a different note, I am in love with Reglan. It's a medication that is forcing my digestive tract to digest food. I have been hungry a whopping four times in 24 hours! For those of you who know me, hunger is not a feeling I associate with very often. It's so cool to want to eat food, to have it sit OK, to digest it! People really take for granted being able to digest food but I'm in love. I think I'm going to officially get fat now. Even though I'm not supposed to get fat because it's bad for my lupus. What to do, what to do? I suppose I'll keep on with my no process foods diet and take up yoga. I just ate some rice cakes and I'm hungry again! This is too much fun for me! It's like an awesome party in my tummy!

Hm, what to eat next? I suppose I should chew a piece of sugarless gum. That's what people on diets do to keep the cravings away. Oh, and I should drink some more water too!

This morning I went in for my lovely upper GI endoscopy! The waiting room filled up quickly and I could tell the staff was running behind. It didn't help they were experiencing technological difficulties. I felt bad for them because they seemed really overwhelmed! My appointment was about 30 minutes late, but hey, that's life.

I was called back there and was given a lovely hospital gown. It was such a gorgeous shade of blue, I think it looked lovely on me. And it wasn't 3,000 sizes too big! The nurse came back to insert my IV, I let her use my arm that wasn't completely bruised from the past few weeks. Apparently she could still tell where I had been stuck at. Luckily she got a vein the first time. She was really nice to me and before I knew it, I was being rolled back into the room. I was determined to stay somewhat coherent during the procedure. It was my goal. I didn't want to feel anything but I didn't want to be dead to the world either. So here's how it went.

Nurse: How are you feeling today?
Me: I'm alive and kicking.
Nurse: Do you have any circulation issues that would prevent us from putting your bp cuff around your leg?
Me: I have Raynauds if that counts?
***Doctor casually strolls into room***
Doctor: How are you today?
Me: I'm fantastic, not really, but I'm awesome at make believe time.
Doctor: So do you want your Mom to know what's going on after the test?
Me: Unless something horrific happens like you accidentally punch a hole through my stomach with your magical tube, I'll tell her. She tends to get a little spazzy.
Doctor: OK, do you think you will be understand what I write on the discharge sheet?
Me: I can read French, Latin, and Hebrew. I think I can understand your medical jargon.
***Nurse starts injecting me with lovely goodness***
Doctor: It says you are single, never married. 23 is a bit young to get married I suppose.
Me: I don't mind commitment but I don't think anyone would want to commit to me.
Doctor: Don't tell sell yourself short.
Me: I just haven't done much looking here lately. I kind of like someone but it's complicated.
***Doctor starts staring at my vitals and looking at my chart***
***I'm gone, out like a light.***

I failed! I completely failed! I wanted to be awake, it was so evil. Gah! When I woke up I kept feeling like I was watching television when I wasn't. I hope I didn't say anything embarrassing. That is my biggest fear whenever I get sedated. I'm not worried about having my stomach punctured or an allergic reaction. No, I'm worried about saying something odd.

Anyway, my stomach isn't emptying properly, no bueno! I'm now taking Reglan before my meals and I don't know whether it was because I was still slightly sedated or what? But it did make me incredibly "happy" mixed with a touch of sleepiness. I'm better now. I don't know if there will be results in a few days from anything. Tomorrow I have an appointment with an cardiac electrophysiologist. Maybe then he can figure out what is going on with my heart.

Oh and I have news, big news... Drum roll please.

DUNUNUNUNUNUNUNUNUNUNUN!

I have been approved by insurance to see a periodontist! That means insurance will hopefully help cover the surgeries I need. That means I won't have to put a Honda in my mouth, only a Kia! YAY! That's all the news I have for now. Oh and the people from Life Is Good asked for my address today! That's super exciting for me, I love a good surprise! Also I love wheat pita bread heated up in a non stick pan sprayed with some non stick cooking spray. If you let the pita get slightly brown and crispy, take it out of the pan, drizzle with extra virgin olive oil, and add a sprinkle of salt, it equals complete happiness!

This morning I went to church, for the first time since Ash Wednesday. For those of y'all who know me, I used to the quite the church goer. I was there practically every Sunday, sometimes almost all day. And you could usually find me at church during the week as well. I spent a lot of time at my church over the years, met a lot of people, worked different jobs, all while spreading a lot of cheer. Of course the past few years have changed my opinion about church and what it means to me. My Mom still gets upset and asked ten thousand questions and spouts a lot of phrases. Her favorite one is "You used to love church!" Notice the use of the word "used" which happens to be past tense. That means at one point, I did love church, at another point, I didn't love church as much.

Here's my deal with church, I'm not a big fan of the organized religion thing. People, like my mom, confuse spirituality with religion. I am a spiritual person, am not particularly religious. But that does not mean I don't believe in God. Believe me, I believe in God, I pray too. What bothers me about organized religion is the politics that really have nothing to do with the spiritual aspect. But some how, some way, the politics tend to dribble into the spiritual beliefs. It can often leave a person feeling torn between an issue they are passionate about and their faith.

I also don't like how gossipy church can be. I understand that people are curious, especially when it comes to me. When I tell a person something, I'm telling them in confidence unless I say "Go ahead, tell so and so." Or with this blog, it's public information and that's the way I've decided it should be. It was a personal choice which I was able to make for myself. The problem with my church is that if you tell one person one thing, by the end of the day, everyone will know. It happened a few months ago when my Mom told something about me that I was planning to keep a secret until I had a definitive answer. When I showed up for the Christmas Eve service, everyone, and I mean everyone, was bombarding me with questions.

Anyway, this morning at church I got to see some awesome people. I'm talking my favorite church folk that I've known forever, who I love and trust. Of course there are some new people too that I'm growing fond of as well. Everyone was thrilled to see me and I was feeling particularly bouncy this morning. I suppose that made everything better for everyone. I was talking to one amazing woman, I've known her for what feels like forever. I used to babysit her kids eons and eons ago. And her husband is a doctor by day and rock star by night. Or at least he's a rocker and roller at church. She comes up to me and she says "YAY for having a treatable disease!" We high fived, it was totally awesome because my hand-eye coordination stinks and I didn't miss!

All of that got me thinking, yay for having a treatable disease! Some people at church don't quite understand lupus. They think because I'm feeling better that I no longer have lupus. I will always have lupus, there will be points where it doesn't flare and make me really sick. There will be points when I will get really sick. In a way, I've embraced my lupus, I can't get rid of it, I can't cure it, so I have to live with it. Some days it can be really obnoxious and other days it's as if I'm completely healthy. Either way, it's a part of me, it's in my soul, it is embedded in my identity.

Some people say "I may have lupus, but lupus doesn't have me." For me, lupus has me, but in a good way. Lupus motivates, inspires, pushes, moves, and pulls me. It forces me not to get trapped in all the bad things this disease brings. It makes me overcome obstacles I never thought I could. Having lupus is like living with a drill instructor, life coach, artist, best friend, and worst enemy, all rolled up into one. Every day is a new day, every week is a roller coaster, and every month is filled with goals that have been accomplished. It's my life and I'm a better person for everything I've endured. And I can smile like I do because I know I can continue on with the long journey I'm facing. I've always been strong, but it helps when you have a drill instructor, life coach, artist, best friend, and worst enemy pushing you to do your very best.

I don't exactly have anything new on the medical front to discuss. But I do have something on an inspirational level to share with y'all! Earlier this evening, I decided to send an email to the folks at Life Is Good. Most of you know that when I go outside, I'm sporting one of their lovely baseball caps. On their website, they have a page where people have shared their stories and how the Life Is Good company has affected their life. On a whim, I decided to share my story.

An hour later, I received an email from the director of communications, Jim. He was so inspired by my story that he asked for my permission to use it. It could be included in their book FUEL. It contains the life stories of people from all walks of life, with all different experiences, but with one common thread that ties it all together. The fact that no matter what, life is good. They hand this book out to employees as a way to inspire them, to show them that their work does impact others in a beneficial way. My story is also being sent for review to be in one of their weekly emails. Their emails get read by about 80,000 people a week. He is also going to see if my story can go on their website.

I won't know anything for a while, I'll certainly be on the lookout though. It's quite exciting to think that I might be able to share my story with such a large audience! I just thought I would share this little tid bit with all of you lovely people who read my blog.

This morning at had an appointment with a new gastroenterologist. My old one was a doof, a big ol' doofy doof. He apparently liked "open and shut" cases. Way to go for discrimination and being an underachiever. Isn't part of life is to challenge yourself and expand your horizons? What about continuing education? Doctors should continue with their education throughout their career in order to be up to date on the latest and greatest techniques. I think my old gastroenterologist was the dunce of the class. Or maybe he was really smart, too smart for his own good? Who knows, he's not one of my doctors anymore, thank goodness!

Anyway, I was very, very impressed. First of all, they have early morning appointments, like 7:30 AM. I hate waking up early, once I'm awake I'm usually OK, but it's the part of getting out of bed that takes a while. I am not a big fan of the middle of the day appointments because by that point everything is running late. That means I am waiting longer than I should, my appointment time is being cut short, and I usually end up leaving frustrated for being rushed. The receptionist and nurses were so nice to me, I was surprised. Over the phone they didn't seem too amicable. My gastroenterologist was amazing! He managed to get a hold of the records from my old gastroenterologist. That's something I've been trying to get a hold of for years but no one ever contacted me back! Apparently my old gastroenterologist also messed up quite a bit when it came to my case. He's a bit concerned about some of my blood work too. Hopefully this will get all straightened out soon!

I have an appointment for a esophagogastroduodenoscopy (try saying that five times fast) on Monday morning. In normal people terms it's an upper GI endoscopy. On a side note, my primary care physician just called about some extra lab work that my insurance won't cover. He said "Insurance usually covers it if you have the right code." My answer was "I called my insurance, they don't cover it, I'm not paying for it out of pocket, you have tons of my blood work on file." He wants to work something out, I was hoping the other doctor I'm going to try and see next time would call me, not the sloth man. Back on track, I've had an endoscopy done before but this time they are checking for tightening in my esophagus which is a symptom of scleroderma. Scleroderma is another one of those lovely auto-immune diseases that I'm at risk for developing.

The upper GI endoscopy will make Monday not so fun. I'm hoping they don't overly sedate me, last time I had horrible side effects and they never told me what they gave me. I'm hoping to only be lightly sedated, especially with my heart problems, too much sedation could be very dangerous. Of course I'm sure my fabulous gastroenterologist will keep this in mind. On a side note, he is jealous of my rheumatologist because he uses a tablet PC and he does all of his medical charting electronically. I didn't know it was so expensive to do until today! Heish! I wonder how my rheumy pays for it considering it's just him and his practice. I hope the receptionists are getting paid.

I think these past few weeks have been a bit serious. I've also done a lot of doctor switching. Maybe that's why this little piece of humor makes me chuckle so much! You might consider switching doctors if...

• He calls you at two in the morning "just to talk."
• Instead of rubber surgical gloves he wears oven mitts.
• He keeps accidentally referring to himself as "the defendant."
• He thinks Eastern Medicine was developed in Long Island.
• He keeps accidentally referring to your legs as "drumsticks."
• His examination room is Room 201 at the No-Tell Motel.
• He introduces you to his anesthesiologist, "Doctor Jim Beam."
• Before surgery, he asks if you want this "to go."
• He tries to color your X-rays with crayons.

I'm hoping that my decrepit laptop can handle one last blog post before it decides to die and go to technology heaven. Well, today has been quite informative, not really, but I'm pretending it is. After spending all last week in the hospital, I finally got to see my rheumatologist today. I apologized immensely, I was absolutely mortified about last week. First of all, I'm not a needy person, secondly, I don't cry, thirdly, my Mom put him through hell. Apparently he is cool, calm, and collected but he lost his cool with the idiots at the hospital. I feel terrible even though I know it wasn't my fault. I just keep thinking that it wasn't as bad as I thought it was. Of course my accuracy is not exactly perfect because now I hardly remember any of it. I wrote about it, didn't I?

Well, he doesn't think I have arthritis in my rib cage. He thinks the technician needs to learn how to keep his mouth shut. Um, I've never heard a doctor use profanity until today. And it wasn't directed towards me, thank goodness! Anyway, he thinks it's definitely my heart, he is like 99% sure of it. So I get to see a cardiac electrophysiologist next Tuesday. I got asked if I did recreational drugs, if I had just ran a marathon, or if I had consumed large amounts of energy drinks. He came to the conclusion that since I didn't snort copious amounts of cocaine while running a marathon and sipping a latte, there is something wrong with my heart.

Right now my pulse and blood pressure is being controlled by medication. But he is still worried about the root cause. It's great that right now it's not giving me any hassle but he wants to know what's going on. The cardiologist at the hospital was apprehensive about doing anything invasive. At this point, if it serves a purpose and gets to the root of the problem, go for it. What's so invasive about a small slit, a tiny tube, and a camera? I don't get it. Maybe I'm so used to this sort of stuff where a camera being shoved through my arm doesn't bother me? I know there is a risk but there is a risk for everything. If you read a book, you have the risk of getting a paper cut. If you go on the internet, you have the risk of getting a virus on your computer. If you improperly cook chicken for dinner, you have the risk of getting salmonella poisoning. Seriously people, think about it.

I have a gastroenterologist consult on Friday morning. Joys of joys! I just wish they would go ahead and do the testing on Friday, but no, I will have to get dragged in there next week. I know they do it for the sake of money but wouldn't it be quicker to just run a test? An upper GI endoscopy takes about 20 minutes max. If you count in the prep and sedation time, it goes up to 30 minutes. Recovery takes about 30 minutes to an hour. At that point a doctor doesn't have to be there, just a nurse. So the total time for the test is one hour and thirty minutes. Throw in the fifteen minute consult and someone could be in and out in under two hours. Hello happy doctors, do the tests the same day! That's why you have giant practices! Have doctors who only do certain tests! Save the patient some time and some sanity already!

I'm also waiting to hear about the blood work that I had on Saturday. It wasn't the crazy blood work like my rheumy runs on me. Luckily I didn't have to go get labs done today because I would have had to say "It's not happening, veins are closed for business for a week."

Also, if anyone needs some minor secretarial or organizational work done, please let me know! I'm trying to get back in the work world but unfortunately I can't handle the typical Monday through Friday 9-5 job. I'm looking for 2-3 days a week with flexibility to go to doctors appointments or in case I'm not feeling well. I can handle filing, answering phones, but I can't be on my feet all day. My joints just can't take it. If I'm on my feet all day one day, I'm off my feet the next day. I'm just trying to get my strength back up and I could use a little bit of cash as well.

Hi everyone! I just wanted to inform you that my technology is attempting to bite the dust. So if I go AWOL for a while, I'm probably not in the hospital, more than likely it means my laptop needs a defibrillator. It's been threatening to die for about three months now But I kept putting it off because it's busted up beyond repair and financially I haven't been able to get a new one. Now it's probably going to go any day now. I really would love a Mac because my sister has one and she has never had any issues with it. I don't think I get along with PC's in the first place, they seem to hate me. Of course Mac's are way out of my price range. I'm about to pull my hair out because I just need something to go right. Well, wish me luck because right now I don't have any at all.

Where's a mysterious benefactor or fairy Godmother when you need one? First my health issues, then my ipod, now my laptop. I know it's Lent and that's about suffering but jeez what on earth did I do to deserve this?

Sorry I've been slacking on the blog front. I've been beyond exhausted and I think it was all left over from this past week.

On Friday I saw a new GP at the advice of my Godmother. She's all into healing the mind, body, and soul. And in a way, it's a good concept. The place I went to was very, very nice but unfortunately I did not connect with the doctor. First of all, I'm so used to doing everything for myself, answering questions, filling out paperwork, filing authorizations, I do it all. What bothered me the most about this doctor is that in the middle of our consultation, he goes back to the waiting room, gets my Mom, brings her into a separate room, and talks to her. My thought was "Erm, hello? I'm 23 years old. If you want to talk to my Mother, shouldn't you ask my permission first?" I mean that really, really bothered me. Of course he said "Getting your history from one person only allows you to get one part of the history." Well, I may have memory loss but my note taking and history skills are impeccable.

I can also understand wanting be be thorough, I love a thorough doctor. But he was just slow, I'm talking turtle slow. I think a sloth could have moved faster. He would ask me a question, I would answer, and then he would just stare at his notes. Also at this place they are not a big fan of prescription medications. I'm sorry, I love my prescription medications, the ones that work and fix issues. You take away my Promethazine and you will wish you were dead. My body hates me without Plaquenil. I don't like to be overly medicated though. He kept asking me if there was anything else and I said "I still have chest pain." Did he give me any advice or write me a prescription? No. I later found out that he had been an optometrist for like 1,000 years. Yes, he's that old.

What bothered me even more about this place is they kept trying to shove their supplements on me. They had their own recommendations, the brands they trusted. I understand that not all vitamins, minerals, herbs, and supplements are created equally. Those sorts of things are not regulated by the FDA in the same way that prescription medications are. You don't exactly want to buy a supplement from a guy selling them on the street. But I don't have an issue going to a local chain vitamin shop or my local healthy food store to get my supplements. But he kept saying his stuff was supreme and of course my Mom fell into the whole trap. I kept saying "I can get this stuff cheaper else where." But does anyone listen to the 23 year old who can diagnose herself 99.9% of the time and who is correct 99.8% of the time? No.

I'm hoping next time to see a different doctor in the practice. I'm very leery about this new doctor though. I like the place because it isn't your typical doctors office. It's more like a spa. But I'm still apprehensive. Maybe because I'm used to the cold rooms, bright lights, and speedy doctors? Hopefully I will connect better with the other doctor. When I feel one step away from death, I don't want a doctor who is slower than a turtle. What if my heart were to go "thudududududud____thudududududud_____thudududududud____thududud" again? Would he know what to do? It would probably take him ten thousand years to stand up to get over to me.

My next visit I am going to explain that I am willing to try to follow the program they specify, I just have to buy my supplements elsewhere. They charged me $43 for a bottle of cod liver oil because apparently it had higher concentrations of nutrients. Yeah, GNC has a bottle, not the same brand, but practically the same ingredients for $13. I also understand they are trying to promote health and wellness. But at the end of the day, they are a business. Most doctors don't make money off of people who have insurance. A place that treats mind, body, and soul has the extra opportunity to rip you off for the sake of "health." I'm going to take the supplements until I finish them, after that I'll switch over to a brand that I research myself. If it turns out it doesn't work as well, maybe these new age doctors actually know something.

I had to get more labs done on Saturday morning for this new doctor. My veins are shot, closed down, need a rest, and trying to get remodeled. The poor phlebotomist had a heck of a time getting a vein, it took her quite a few times. She felt bad for sticking me but I couldn't feel it. My Mom also wants me to see a new cardiologist but she wants me to go through my rheumy so then he could get me an appointment quicker. I feel bad for my rheumy, my Mom put him through hell and back last week. I feel like I need to make him cookies. Maybe I should? I hope he isn't allergic to anything. I also feel bad about asking him because apparently he referred me to an excellent cardiologist. Excellent for a man perhaps but women already get looked at as if they are crazy. Especially when they have an auto immune disease which are seen as something "all in the head."

In other news, my precious pink i-pod mini saw it's demise on Saturday morning. After serving me faithfully since 2005, seeing me through so much, it's a sad occasion. Unfortunately this past week has been way too expensive because the damn cardiologist kept refusing to admit me. Unfortunately not everything that is wrong with a heart can be found with an EKG and chest x-ray and he refused to do anything invasive. He was like "You're too young for an invasive procedure." I'm sorry, I thought that younger people were more resilient than older people? Oh well, what do I know, I'm only right 99.8% of the time time. So yes, no more i-pod for me. It's sad, that thing has kept me sane through goodness knows how many doctors appointments. I'm feeling quite depressed over it, I know it's stupid to mourn something so material. But the last thing I need is an i-pod blasting Mamma Mia into my ears.

Even though I am in love the the RED i-pod mini. I like the fact that even though it's the same price as the other i-pods, it goes towards a good cause. The other colors are quite snazzy though... Too bad all the colors can't go towards something good. I love the blue, pink, and purple too. I need to shut up about an i-pod and focus on figuring out to pay these bills, getting more appointments, and getting my health straightened out. My chest is still hurting me like crazy but I'm beginning to think it will forever...

Well I'm still sick. It's really no fun. I'm so exasperated. I'll finish off where I left off on my last post.

Tuesday:

• 11:20 PM arrive at St. Mary's.
• 11:30 PM see the triage nurse.
• 11:35 PM told to wait despite severe chest pain, dizziness, fading in and out of consciousness, dehydration, difficulty breathing, nausea, and tremors.

Wednesday:

• 12:45 AM taken back to ER, hooked up to monitors, EKG performed. Left for dead.
• 6:00 AM doctor comes in and says it's not your heart, we can't admit you.
• 7:00 AM cardiovascular specialist comes in and says he can run a $600 test insurance won't cover. Given nitroglycerin under the tongue, 2 Motrin, and 1 Lortab.
  
• 7:30 AM released from ER, room spinning, forced to walk out on my own, still having chest pain, dizziness, difficulty breathing, nausea, weakness, dehydration.
• 8:00 AM got home, couldn't make it up the stairs, collapsed on ledge. Mom called rheumy, rheumy called other doctors and hospitals.
• 8:30 AM chest pain got much worse (as if it could become any more painful and my tolerance for pain is unreal), couldn't get enough air, nauseated, lost all color, lips turning blue, shaking terribly, freezing cold.
• 9:00 AM Mom ran up to CVS to get me a special version of my promethazine in hopes I could take it so I could take other meds.
• 9:30 AM promethazine didn't work, still had symptoms listed above along with confusion.
• 10:00 AM Mom called 911 again after rheumy told her to. EMT's came.
• 10:05 AM in ambulance, given 2 baby aspirin, oxygen, saline IV, 1 nitroglycerin tablet.
• 10:10 AM throat became very tight, felt like only a bit of air was passing through. Could breathe through nose but nothing wanted to go into my lungs.
• 10:15 AM arrived at Henrico Doctor's ER cardiac unit, placed in hallway.
• 10:30 AM received yet another EKG.
• 11:15 AM placed in room, wasn't hooked up to any monitors, blood work taken.
  
• 12:00 PM Mom complains, they finally hook me up to get my pulse.
• 1:00 PM Mom complains again that IV bag is empty.
• 2:00 PM find out that I will be admitted to ER due to abnormal blood work.
• 3:00 PM have to have a stress echo test. Held up on treadmill while being forced to walk.
• 3:45 PM find out that I do indeed have heart murmur, still unsure about prolapsed valve, definitely have arthritis in rib cage.
• 4:30 PM taken up to private room in TCU.
• 5: 00 PM in bed, telling nurse all the information I have previously recited to every other nurse, doctor, EMT I had met in the past 48 hours.
• 7:00 PM Ariel comes by to hang out with me for a bit. It was great to have bff there to make me laugh, but we found out laughing was bad because my pulse and bp jumped and chest hurt. Also given dinner tray that looked like death on a plate filled with items I could not safely consume.
  
• 9:00 PM Ariel had to go home but Ashley came to spend the night. Of course she filled me in on her life and I filled her in on the lack of my life.
• 10:00 PM given evening meds along with medication to keep my bp and pulse low.

Thursday:

• 4:00 AM IV saline bag switched out.
• 5:00 AM blood work and vitals taken.
• 7:00 AM Ashley left for work:(
• 7:30 AM world's worst doctor came in to say blood work looked better and he wanted to release me.
• 8:00 AM Jodie from church stopped by. Rheumy call, rheumy mad at other doctors, not me.
• 9:45 AM Jodie left.
• 12:00 PM given most disgusting and inedible lunch ever.
• 2:00 PM discharged, still sick though, bff's bf came to get me.
• 2:40 PM got home.
• 3:00 PM after taking a while to get up stairs, made it up, weak, woozy, out of breath with guess what, chest pains!

So yes, the past few have been hell. I've lost 10 pounds in four days. I'm still experiencing the same symptoms. Saw a new doctor today at the advice of my Godmother. Couldn't see the doctor she wanted me to see but saw one in the practice. I'm on a 7 day elimination diet, no additives, processed foods, and that's just the start of it. Having to take concentrated suppliments to get the nutrition I'm not getting because my digestive tract attempts to kill me. I feel like the doctor is a bit of a quack forcing his suppliments on me, saying they are far superior. I will be seeing the other doctor in the near future.

Tomorrow morning I have to wake up bright and early for more labs. I have a rheumy appointment on Wednesday and a possible appointment with other doctor in quack practice. On Friday I have an appointment with a gastrointerologist. I need to call and see if there is any sort of rules I need to follow. Most specialists try to get you in for another appointment to run tests. I'm going to explain that I don't have the money to come back for multiple tests and something needs to be done now.

Medical bills from this week? A little over $1,000. If dumb ER doctors had just admitted me in the first place it wouldn't have been nearly as bad. But I just wanted to say that the EMT's were absolutely amazing to me, Tuckahoe Volunteer Rescue Squad and Lakeside Volunteer Rescue Squad. I felt terrible about using the ambulance because there are all those old people in Manor Care, near where I live, who are constantly threatening to die. Between falling out of bed and having heart attacks they probably keep y'all fairly busy. I really want to thank y'all for all of your hard work and dedication. Y'all were the nicest to me!

Sorry, I've been AWOL here lately. Since Monday my life has been completely and totally horrific. I've managed to stay chipper and stress free despite the many disturbing experiences. I figured I would do a quick day by day recount.

Monday:

• Had a lovely, relaxing morning with an amazing friend. Drank herbal tea and chatted about life.
• By 1:00 PM I had severe chest pain, weakness, dizziness, pain radiating into shoulders, shortness of breath.
• 3:30 PM admitted into ER with the above symptoms.
• 4:00PM EKG done, pulse was 140, blood pressure was 120/90.
• 4:30 PM received saline drip, blood work drawn.
• 5:00 PM pulse still 140, received shot of Ativan through IV.
• 5:30 PM pulse dropped to 100.
• 6:00 PM CBC came back, was at deciding point (2) for possibly having blood clot. High glucose level (odd because I hadn't eaten in a while and I don't consume sugar), possible thyroid issue.
• 6:15 PM chest x-ray.
• 6:30 PM CT scan with contrast to check for clots.
• 7:00 PM chest pain was gone, feeling better, no clots were found, thyroid results wouldn't be available for 24 hours. Discharged.

Tuesday:

• 1:00 PM Rheumatologist appointment. Pulse was 140. Rheumy called cardiovascular specialist at St. Mary's. Tried to keep my pulse down the best he could.
• 2:00 PM arrive and check in at cardiovascular office.
• 2:15 PM nurse took information and vitals and performed EKG.
• 2:40 PM cardiovascular specialist came in for all of five minutes. Said I had a heart murmur and said I needed an echo. Informed me they couldn't do it there but would be seen immediately at Henrico Doctor's.
• 3:00 PM arrive at Henrico Doctor's cardiovascular specialist office.
• 3:30 PM severe chest pain, dizziness, weakness, nausea, exhaustion, dehydrated.
• 4:00 PM chest echo performed, cardiovascular specialist wasn't there to look at results.
• 4:30 PM left office, got out in hallway, felt as if I was going to fall over and die. Called rheumy, told me to go across the street to ER and say I had chest pain.
• 4:40 PM, entered ER, said I had chest pain, room was spinning, triage nurse told me to go wait, Mother pitched a fit. Got me in wheelchair saving me from collapsing on floor.
• 5:00 PM put in cardiac ER.
• 5:15 PM hooked up to monitors, EKG performed.
• 5:40 PM possibly mitrial valve prolapse.
  
• 6:00 PM, shot of a beta blocker. No saline drip, no nothing. Difficulty breathing, chest pain, but was awake yet confused.
• 8:30 PM cardiovascular specialist refused to admit me because he said there was no reason to admit me. He said my heart was under control with beta blocker shot.
• 9:00 PM got home, showered ER germs off, went downstairs to get something to eat.
  
• 10:30 PM Came back up stairs, almost collapsed on stairs. Managed to get into bed, started crying from pain, severely confused, kept passing out and waking up. Told Mom I didn't want to go back to ER.
• 11:00 PM Mom called 911. EMT's came, don't remember much. Carried me down the stairs and out to the stretcher.
  

Well, I'm too exhausted and in too much pain to finish this right now. I thought it would be good to keep my mind off of it all. But I'm starting to get confused and shaky again. I can't go back to the ER, they hate me.

Hey everyone! Well, today has been like an Indiana Jones adventure. It started out great, throw in some boulders, people shooting at me, and then I found the gold (meaning medicine). I figured if I didn't write a big huge blog I would have to answer to everyone individually. And I am way too drugged up to do that!

This morning, I went to go have coffee with one of my closest friends. She used to be my mentor but as time passed along, we become friends. She has always been so supportive of me. Even in times where I didn't know it, she still stood up for me. I truly believe that she would do anything for me if it were in her power. I had a lovely time, I was craving the sun, not a tan, just to feel the warmth on my face. Sunlight is a rarity and slightly dangerous for me. I was thrilled to be outside with someone whom I felt I hadn't seen in forever. I was sipping on iced herbal tea and she was sipping her coffee. We roamed around the city for a bit after a lovely and heartfelt conversation. No matter what happens in my life, no matter how long it's been since we've talked, it's like we instantly catch up.

Well towards the end of our short adventure, I started to feel short of breath and woozy. But I assured myself that I just over exerted myself and I would be fine after a couple of hours of rest. I got home and I thought to myself "Maybe a shower will make me feel better?" I was in the shower shaving my legs (a light bulb went off in my head saying "you might want to shave") usually I only shave my legs unless I have to. Towards the end of my shower, I started feeling short of breath with a feeling of someone was pushing on my chest with their hand.

I went downstairs and got the blood pressure monitor with the super small cuff that was ordered to fit my arm (I'm FUN size). So my blood pressure was withing normal range, usually around 120/78. But here's the kicker! My pulse was 125. I have an unusually high pulse in the first place so I wasn't too worried. I took my pulse every five minutes while remaining calm, and every five minutes my pulse was climbing by 5 points. I was feeling weak and lightheaded before the pulse adventure. Not to mention the chest pain. I called my rheumatologists office and he was out but the receptionist contacted me back and said "Get someone to drive you to the ER, go NOW. Do not drive, go to the ER NOW!" I called my sister, then my Mom, then my sister, and then it is decided my sister is taking me to the ER. But then all of a sudden it all got much worse. I got really hot, clammy, pain radiating into my shoulders. The only thought running through my mind is "Oh shit. Great. A heart attack." I grab my baby aspirin, chew the tablet (DISGUSTING POWDERY MESS), all while trying not to choke.

My sister comes to pick me up and she was more flipped out than I was. If I was having a heart attack, the best thing to do is to stay calm. There is no point in flipping out because you are only putting more stress on your heart. She was texting, Facebooking, Twittering, MySpacing, goodness knows what else while driving. I told her my heart was a tad bit more important than her cell phone. She didn't turn off her cell phone until the very last minute.

We get to the ER, fill out the doofy form, for example.
"What are your symptoms: Chest pain, dizziness, light headed feeling, numbness in fingers and toes, pain radiating into shoulder, shortness of breath."

Apparently in triage nurse terms "short of breath" = anxiety. I'm short of breath because I feel like something is on my chest and it is a pain that is not pleasant. Sorry if I'm not full of hot air. So on my chart it said "anxiety." That's what I hate, you're a young woman with heart attack like symptoms, forget the fact that something may actually be wrong. You're a woman, you're weak and frail, your life sucks, so yes of course you had an anxiety attack.

Back in triage the nurses looked at my hands all funny and I was like "Yes, I have Reynauds Syndrome, livedo reticularis, my hands and feet will forever look like this." They had never seen it before in real life, only in books, apparently I have a text book case, joys of joys. I wanted to say that I had frostbite in this 80 degree weather because I enjoy being an ice sculpture carver. They hook me up to check my pulse and it was between 140-145 and skipping beats all over the place. At that point it is decided that I get to hang out and get a room!

I get back in a room where the wrangling of the gown began. First of all, it was loud and noisy back there so I couldn't hear which way to put it on. Every place seems to do it differently. I put it on wrong the first time, the story of my life. But let me tell you, my nurse was so nice to me and I was putting on the charm. I figured her day has got to be way worse than mine, I'd take chest pain over dealing with patients any day of the week. I got hooked up, had an EKG, chest x-ray, CT scan, blood work, saline drip, and a loverly dose of ativan that made me happy as a clam.

I was on the borderline for having a clot but that is something that gets investigated tomorrow. I was sent home with a prescription of ativan in case my pulse goes off the charts again. Right now I'm doing well, tired, high as a kite. The ER was packed so hopefully I haven't picked up anything scuzztastic. I have more doctors appointments tomorrow, probably run some more heart tests. See what happens in this messed up body of mine.

So I ended up with the diagnosis of sinus tachycardia which is a dinosaur that lives within my heart. And that makes me special!

Well the past few days have really forced me to get organized when it comes to medical records and things a person needs when going to the ER. For most people with a chronic illness, you have stacks and stacks of records, paperwork, insurance claims, appeals, lists of medication, past allergic reactions, it's pretty much your life typed down. It's hard to keep papers organized when you just throw them in a folder and say "I'll deal with it later." What's even worse is when you pick up the folder the wrong way and all the papers come flying out. As if you aren't feeling exasperated in the first place. Seriously, do you want to be sorting papers while sitting in the ER waiting to be seen? I know I don't!

I'm going to go out and get a three ring binder and dividers. I'm going to put the dates in the divider tabs, so every time I have a day full of appointments, it can be filed under than date. That way, if I needed to know the results of blood work from one year ago, it wouldn't be a big deal to find it. Plus with all of my medical records will be hole punched and secure in the binder. No more accidental paper airplanes! I'll probably decorate the binder with stickers. "Why?" you might ask. Let's say you are in a crowded waiting room and you have to leave your stuff in a chair for a minute while you go get a drink of water. When you come back, your stuff has been moved and it's not in your field of vision. Finding a bright blue binder with penguin stickers all over it is a heck of a lot easier than finding a plain black binder which anyone could have.

I also got to thinking it would be much more convenient to keep a small tote bag by the door. I would keep my binder in there, a bottle of hand sanitizer, a pack of sugarless gum, a book, crossword puzzles, a change of comfy clothes, and a couple of bottles of water even though most waiting rooms won't let you have open containers filled with a beverage. But who says you can't sneak around a corner for a sip, especially the person who is sitting there with you. Always check with the nurse to make sure it is okay if you have a little sip. A lot of medical tests have restrictions!

Always call your doctor or have someone call for you to let them know you are going into the hospital especially if it is one of those late night ER visits. I hate inconveniencing someone as much as the next person does but your doctor needs to know. Try to go to the hospital where your doctor has privileges at, luckily mine works at three different hospitals, two of which I can go to. I also like to choose the hospital with the most ER stations, the more stations there are, the quicker you will be seen (most of the time).

Be nice to the nurses too! It's hard to be nice when you feel like death on toast but the nurses are the guards in my opinion. If you aren't nice, they may not be as willing to get you swift treatment (unless your head is hanging on by an artery). They are just as tired as you are and your life is in their hands. Doctors tend to just come by and diagnose while nurses get stuck with all the hard work. Nurses are not there for the sole purpose of serving you, they are not your butler. They are there to help you feel better and possibly save your life. Treat nurses with dignity and respect! Without them you may not have that lovely IV in your arm; getting re-hydrated while being pumped full of lovely pain medicines.

There is a hospital in my area that I love because it's a smaller hospital but there are private rooms. Unfortunately, my doctor doesn't have privileges there (sad, I know). Ahh, private rooms! Here's why I hate sharing a room, it's not that I hate you or that I'm a mean person. But I don't want your visitors in the room talking up a storm. I prefer to be left alone and that fabric curtain is not a soundproof concrete wall. I don't care that your dog misses you and your boss is having a holy hissy fit because you're missing work. It's great that your kid drew you a picture but I don't want to hear about it for two hours. I'm not going to tell you to be quiet either because I do have class. I'll just lay there and try to ignore the family reunion you are having. Maybe if people who had visitors but also had to share a room could be a tad bit more respectful? Not to mention I don't want to be in the same room as someone who may have something infectious while my immune system is already freaking out. Talk about adding fuel to the fire!

My advice is to keep a bag by the door with all the necessities. You are your own secretary. No matter what, be respectful of nurses. Try to keep your patience even when the wait is long and the room is crowded. And remember that your roommate may not want to be a part of the little party you're throwing.

Oh goodness, where do I start? Sorry I missed out on yesterday's post, I got a late start to my day and as it went on I felt worse and worse. It all started on Tuesday night right before I drifted off to sleep. All of a sudden I had a piercing headache that felt like someone was drilling into my temples. I have a high tolerance for pain, I also used to get migraines, so headaches don't normally bother me. It hurt so much I cried and my stomach was so upset I couldn't take any pain medicine. At least there was a good biography about Steve Martin on. Did you know he is an accomplished banjo player?

On Wednesday evening I had a little bit of a scare. My stomach was more upset than usual and I had lower back pain. Now the average person would say "Oh I just had indigestion and I lifted something too heavy earlier." But I'm not your average person, lupus tends to affect your kidneys and my first thought was "Oh jeez, please tell me my kidneys aren't deciding to crap out on me now?!" Luckily it turned out to be a false alarm.

Last night, I felt the beginnings of some sort of respiratory illness. Severe chest pains, tight throat, minor cough, congestion, yeah a big bucket o' fun. It has hit me full blast this morning along with chills. I don't know if it's viral or bacterial, if it's viral, not much can be done. Lovely bacterial infections get a mega dose of antibiotics. Of course there is the lovely list of instructions I have "Call doctor or 911 if you experience any of the following symptoms..." But of course at the end of every sentence describing a symptom it says "without known cause." Well jeez, I know I have chest pain because my heart and lungs are inflamed. I know I have chills because I have a fever. I know I have a fever because either I'm getting ready to have a flare or it's this respiratory illness. I know my throat is tight because of the respiratory stuff.

I hate going to my primary care physician because they suck. When I say suck, I mean suck. It's like a walking death trap. Every time I go in there, I walk out with something else. I mean I would have better luck of getting better if I licked a trashcan. Once the weather warms up I am going to find a new primary care physician, someone who is understanding, not quick to judge, who has a clear thought process, and where there is not carpet in the waiting room (gross). I'm sick and tired of dealing with the whack job doctor who just excuses everything when 99% it has ended up being serious. "Oh, it's just viral..." I come back one week later still sick and I'm like "Is this still viral?" and Mr. Whack Job says "Oh, I guess it was bacterial after all..." Well no duh, you should have done blood work in the first place.

I've gotten so good at self diagnosing that I can usually tell if it's bacterial or viral. This is feeling bacterial. Too bad doctor's don't actually listen. My life would be a whole lot easier if I could call the doctor's office, explain my symptoms and say "This feels like the same bacterial infection I get every few months." But no, life cannot be that easy. I think I'll call my rheumy and get his opinion. Maybe he will phone in some antibiotics for me? And some pain pills for this headache, I think the drill bit is stuck in my brain matter by now.

So yes, life is complicated when it comes to having imbecile primary care physician. Throw in an infection where the patient can figure out the cause quicker than the doctor can. Too bad I'm not bright enough to make it through med school. I'm intelligent, just not with math and science. I have more common sense than anything. Oh well, I think common sense is a bit more important than book smarts.

My advice for any of you with a chronic illness, you have to be your own advocate. If you aren't satisfied with your health care, fix it. If your insurance treats you like dirt, call your company, get on their case. If you aren't satisfied with your doctor, try to reason with them, if all else fails, find a new one. Always check to see if your medications will interact with each other. Doctors tend to forget to check and see if your current medications will interact with the new ones. Your pharmacist may not always check too. It's up to you to check, your health depends on it. You have the right to be treated with dignity and respect. You have the right to receive the best possible care. You have the right to feel good. And sometimes that means you have to stand up for yourself fight for your rights.

My sister thinks I should make this blog more personal. Well, my name is Erika, spelled with a "k" not a "c" not a "ck", I have to make that clear because you would be surprised how many people misspell my name. I'm not a very open person when it comes to talking face to face. I try to be as personal as I can be, but it's difficult. I would rather keep everything to myself. But when I write in a journal, I will write and write and write and write. I can be very personal and revealing if I'm just allowed to write it down.

So what are some little factoids I could spill to you to make this blog personal? I'm 5'1 and 3/4 inches tall. I twitch, but only to the right side, be careful if you stand next to me, I've accidentally hit someone before. I have full eyebrows, I can't seem to pluck them down to the perfect skinny lines that everyone else seems to have. I'm terrified of spiders, I don't care if it is of minuscule size. I worry, a lot! And I plan, a lot! I can't make an important purchase before I do research. I am a complete and total neat freak. I love to clean, I like things to be spotless. I'm still wearing clothes from middle school because I'm still the same size. I think up recipes before I go to bed and nothing ever comes of them. Other than an image of what the food will look like in my head. I can only paint when I'm inspired, if I'm not inspired, I actually dislike my art very much.

I think today is going to be a good day. Even though I was off to a slow start. I didn't get a lot of sleep last night because I had a huge headache that felt like a drill was attacking my head. I still have a residual headache, body ache, everything aches. But hey, it's going to be a good day for me. Sometimes when everything hurts and you're so tired you just have to tell yourself that it's going to be a good day. It takes a little white lie to make everything okay. Maybe the next time you're having a rough day, tell yourself a little white lie and say "It's all gonna be okay." And you may not be able to believe it at that moment, you may have doubts that it will come true. But it will, everything always ends up okay, we just have to wait for life to get to that point.

I just had a bit of a realization! I was wondering how the heck I was going to manage during the weeks that I have surgery. I'm not allowed to eat or drink for eight hours after my surgery. I'm hoping I can get an early morning appointment, 7 AM or so? I will wake up super early and just have enough water to take my medication. If my surgery ends by 10 AM, I will be allowed to drink something at 6 PM. I'm not allowed solid foods for a week, bummer. Well, I got to thinking, what if I could find a low sugar meal replacement powder to mix in with my unsweetened soy milk.

I found one, yay! 2 grams of sugar! And one serving of my soy milk has 1 gram. That makes three grams of sugar! YAY! Considering I will probably only want to drink one of those a day, that's pretty good. Plus I will be getting vitamins, minerals, and whatever other good things they put in that crud. I'm looking for low, low, low sugar stuff because I won't be able to brush my teeth either. GROSS! But hopefully there will be a special mouthwash that they will give me. Of course I will be sipping everything through a straw so nothing can be too thick. Otherwise that could cause issues with my grafts. Who get's excited over protein powder? Someone like me.

In other news, my Granny is over at the house because the power is out at her house:-( Poor Granny. But she's happy because she has coffee brewing downstairs. Anyway, when I went downstairs to get a bottle of water, I wasn't wearing socks. She asked "Are your feet cold?" I said "No." Then I realized I couldn't feel my feet. Oh joys of joys. I had a dee dee dee moment. Now I'm wearing socks. Oh the Martha Stewart Show is freaking me out, Martha has her dentist on and they are showing pictures of messed up mouths on a HDTV. Gah! Please, let's make me more anxious?

I was singing earlier and my chest really started hurting, I ignored it and kept singing. It went away after a few minutes. That's the funny thing with lupus, one minute you're perfectly ok and the next minute you aren't. It's insane! Or if you work really hard one day, you're completely out of it for the next three. Oh and I love it when people say "Is there a pill for this?" My reply usually is "Well why yes, there are, and I'm on them, and if my doctor magically finds another pill to help with other symptoms well by golly I'll take it!" People think they know it all, they also think I know it all. I also know that I don't know it all. But I probably do more research than most of the people asking me questions.

Well, Martha still has her dentist on, hopefully she will kick him off soon. Oh goody, she has a guy coming on next with the biggest, whitest teeth ever. And he's going to talk about rare antiques. Now's a good time to go floss and take a pill.

So this is my first post on this blog! Yippee! For those of you who don't know, about a month ago I was diagnosed with Systemic Lupus Erythematosus. I have been sick off and on for about 3 years and living with a very unappealing diagnosis. I was able to get a doctor to listen to me and take another look at my case from a different point of view. Lots of tests, paperwork, and waiting later, I had a diagnosis that completely changed my life for the better. It's been a rough few years but I'm hoping my life will only go up from here. I'm trying to start fresh while not forgetting my past. Oh wait a minute, I forget my past all the time!

At this point most people start with the phrase "I suffer from..." Well I don't see it that way, I live with arthritis which on some days can be debilitating. I have a lot of stomach problems, especially nausea and abdominal pain. Extreme fatigue while also dealing with insomnia is part of my daily life. I have pleurisy and pericarditis which means the lining of my lungs and heart are inflamed. Talk about a double whammy! I also have have Raynauds Syndrome which makes my hands and feet very cold, my skin is a purple and red with a lace like pattern on it. Fevers are something that pop up out of nowhere for me. My body goes from one temperature extreme to the other, it doesn't regulate itself very well. I tend to bleed and bruise easily, don't be surprised if my nose starts randomly.

I also have problems with my long and short term memory. It's not like I will forget to turn the stove off, I just have a hard time telling you what I did a few days ago. I also don't start remembering much of my younger years until about the year 2000. I remember the most from high school and beyond. But don't ask me about my life as a young child, I can't really tell you. It doesn't bother me all that much but some people, especially my mother, freak out over this.

Another one of my issues is I have a lot of oral problems which is very common for someone with lupus. Part of it is genetic and part of it is the lupus (yes, I know lupus can be genetic but when I said genetic I meant it runs in my family). Because of this I'm going to basically be sticking what you would pay for a car in my mouth. Pretty cool huh? That's why I have the donation button on the side of this blog. Any little bit helps, I know in this economy, money is tight for everyone. But even if you can only give $1, I will appreciate it more than you know! I need a helping hand to get me back up so I can go out there and help others!

Right now the grand total for my mouth is looking to be around a little over $20,000 if insurance doesn't cover it. I'm currently filing paperwork with my insurance and I'm waiting to hear back. But there is no guarantee because my dental insurance really hates me! On second thought, most insurance companies hate me. If insurance does decide to cover part of it, my mouth will cost me $12,000.

Of course you could say, "Why not just get dentures?" Here's my answer... "I'M 23 YEARS OLD OKAY?" I need my entire mouth grafted, part of the tissue will be taken from me, some of it from dead people (mmm chewy), and I'm hoping part of it will be this new chemical compound that looks and feels like your own gums (I'm hoping that my body will be happier with that and will be less likely to attack it). Once I get my mouth grafted which will take forever and a day, I need to start getting crowns and sealants. And don't say "Just brush your teeth." I took my Christmas money and bought a Sonicare toothbrush and a Waterpik. The average person spends about 10 minutes on their mouth a day. I have to spend an hour. I've had impeccable oral care my entire life but I was genetically predispositioned to gum disease and the lupus is not helping this situation.

People are also going to say "Go get a job to pay for it all!" Currently, I'm still in the beginning phases of my new medication, I can't get a job. Some days I'm fully functional and other days it's all I can do to take my medicine. I can't get a job and up and quit to get my oral surgeries either. Each surgery will basically put me on the sidelines for a week. No eating, no talking, no nothing. I will be living off of broth and water. I don't consume sugar like the rest of the world does. I can't drink sodas or coffee. My diet is extremely limited. So for a week, I'm going to be tired and weak, meaning I can't work.

Once my health issues get resolved, I'm getting a job. I am so excited at the thought of it. Currently I am writing letters to local businesses encouraging them to make their stores more handicapped accessible. I'm not getting paid for this, but I feel like my letters might influence businesses to become better places for all to shop at. I just have to get myself in order right now. I feel so selfish having to focus so much on myself. But honestly, I don't have much of a choice. If I ignore myself the the issues my body has it will only get worse. If I'm worse, I'm not going to be much help to anyone.

Well, I have to go now and throw myself back into paperwork. Maybe the Lupie Fairy can come save me for a bit? Thank you everyone for reading this! You're awesome:-)