Sunday, November 25, 2012

The Goal Evolution

I've been going over my posts for the past few months, and dang have I gotten boring. I need to apologize for putting you to sleep.

To My Wonderful Reader,
First I would like to thank you for visiting me here. When I started this blog in January, I was getting a measly 15 page views a month. I got so excited when I hit my first hundred page views. Then, last month, I exceeded 1000 page views for the first time ever! I was so excited I immediately called my boyfriend on Skype to let him know the good news. When I watch the number of page views rise every day, or right after posting a new post and getting 25 page views in 5 seconds, it makes me feel like this Lupus journey is really worthwhile. I can only hope you get as much out of this site as I do.
So I'm sorry that I haven't been delivering good quality content. I've let writing become a chore and it shows. I promise I'll work on stopping my writing from sounding like it's written for the Snooze Show.

Love, Megan

Okay, now back to today's prompt: How have your goals as a patient/advocate/person evolved?

The Evolution Of Goals

It started out when I was 5 or 6. I was playing soccer (football in the rest of the world). The whole point of the game was to score goals. I never really liked it. I preferred to pick the weeds that grew on the field. I never really understood the game. I still don't.

Okay, I'll stop goofing around and get serious. 

For the first six months, my goal was to get diagnosed. And cured. Diagnosed and cured. Because there's a cure for everything but cancer and HIV/AIDS, right?

Then I was diagnosed. Cool, one down. Time to get cured. 

What?! There is no cure?! I have to stay like this forever? Well this sucks.


I had to come up with new goals.

Like: 

Raise a gazillion dollars for lupus cure research. 250 down, a bazillion more to go.
All The Things Meme

Become the healthiest sick person on the planet.

Write a book about my experience.

Knock out my bucket list

Learn to live with this stupid thing (It's like an annoying roommate who keeps playing pranks on you while you sleep).

Help other Lupies with their diagnosis.

I plan on accomplishing all these goals in the next ten years. Maybe the next 5. But the bucket list one will take forever. I have a pretty long bucket list.

The great thing about goals, is once you complete one goal, ten more pop up. I'll never run out of awesome things to do in my lifetime. I'm pretty sure after killing the "healthiest sick person" goal, that's going to put "Olympic something-er" on there. Oh, and running a 5k is on my list, which I'm thinking of doing this February. Gotta start training.

What is your number one goal?





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Saturday, November 24, 2012

A Spoon-Filled Day

Hooray for day 24! I have been MIA for a few days now, but I'm back. Just in time for today's topic: "If I had more than 24 hours in a day…” (Or unlimited spoons or funds)".

With my spoons never at "full", and my bank account always leaning towards "empty", I never get to do all the things I would like to do. If I could have one day of unlimited funds and energy, and more than 24 hours in a day, this is what I would do.

A Day With No Limits

I would wake up, full of energy. I would actually put on makeup and do my hair and everything I never bother with. My poor face hasn't had the attention it deserves in months. If I can remember how to put on eyeliner, I would be amazed. That's how long it's been.

Then I could get up and go exercise. Or maybe I should do that before getting my makeup on.

Okay let's start over.
Makeup artists brush kit.
Makeup artists brush kit. (Photo credit: Wikipedia)
I wake up at six in the morning and cook myself a healthy breakfast, like my yummy 2-ingredient pancakes. Maybe even make my own orange juice. Then I clean my dishes, put on my exercise clothes, and go for a nice jog uphill. Both ways. Do a full body workout that I know I'll feel tomorrow (God, I miss being sore).

Then shower and put on makeup and do my hair. Shave my legs. Paint my nails. EVERYTHING. By the time I'm done, it would only be nine. Maybe 9:30. So I still have time to do whatever I want.

I'd get in my car and drive out to Beverly Hills. My mom told me there's this really awesome bookstore out there that I'm dying to go see. So that's where I'll be headed. Buy lots of books. Stuff them in my car, and head to the LACMA museum. Go on all the little tours. Then walk around and start telling random strangers about the history behind the art. I would make an excellent tour guide.

After finishing up at the museum, I'd drive about 3 blocks down to the Farmers Market and go to the most delicious place ever: The French Crepe Company. I can almost smell the crepes right now. It is just heaven on my tongue. I love getting number 17: L'arc De Triomphe which is Farmer's Cheese with your choice of preservatives. But their Rossi Gourmet Sandwich is also incredible. 

And just a short walk away is some excellent shopping opportunities. Most of the time, I hate shopping. I'm either broke, or my weight has been a problem. But since this day is limitless in funds and energy, and since I'm much skinnier than I used to be, I actually look good in clothes and shopping doesn't make me want to cry. So I'll stock up on clothes that look good and are very versatile, and I'll get one special really hot outfit and head over to either Das Bunker or Circus Disco. I've heard awesome things about both of them, but until I turn 21, I won't be allowed in. 

Then I'll come home, get some reading done, and sleep very, very well. 

Hmmm, maybe I should do that for my 21st birthday. Alas, all my friends are under 21. But I've never minded doing things by myself. I've even spent a few birthdays all by myself.

What would you do if you had unlimited spoons? Or maybe you have some awesome ideas for my 21st birthday! Anyways, let me know.

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Monday, November 19, 2012

Life and Death

Day 19 of National Health Blog Post Month: Life and Death

I came across an article yesterday that broke my heart. It came from the Calgary Times, written by Sharon Kirkey. When The Hurting Won't Stop: How Chronic Physical Pain Drove a Teen To Take His Life is about a teenager who was dealing with mysterious chronic pain. Eventually it got to be too much for him, and he committed suicide.

Part of me is conflicted while reading this. I am sad that someone was suffering so much, and felt so alone, that they decided to commit suicide. The other part of me is glad that he will not be suffering anymore.

I know what it feels like to suffer from chronic pain. I have been in constant pain for the past two years with just a few pain-free days. That poor young man has been dealing with it for many, many years. There have been times when the thought of suicide has crossed my mind. Sometimes the thought of dealing with this for the rest of my life can be hard to handle. But after watching a childhood friend be buried, I knew I could never hurt the people I love like that.

I wish I could have been there for that person. I wish I could have let him know that he isn't alone. I hated reading that most of his friends stopped talking to him because they didn't understand how to deal with a person with a chronic illness. I remember how devastated I was when most of my friends stopped talking to me. It's the loneliest feeling in the world.

My Plea To Anyone Suffering From Chronic Pain

Before contemplating suicide, please seek help first. If you live in the US, you can call 1-800-273-TALK.
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Sunday, November 18, 2012

Caregivers For Lupus Patients

I don't know what I would have done if my mom wasn't there to help me when I first started getting sick. I'm very thankful that I have a mother who would drop anything for me when I'm sick. But Lupus was something new for both of us, and we had to learn things together. So here is a cheat sheet for all you caregivers.

The Coolest Cheat Sheet Ever For Lupus Caregivers

1. Don't ever say "It's all in your head" or "It's all psychosomatic" or even "If you just think positive, you'll get better"- Those phrases, and any similar, are some of the worst things you can say to anyone. I still feel a bit resentful that my mom has used these on me. Doctors shouldn't even say this to patients. There are far too many diseases out there that many people and doctors know so little about.

2. Practice patience- With Lupus, everything changes on a day-to-day basis. Just because yesterday they could do pretty much everything does not mean they can do the same today. This can get pretty frustrating for some people.

3. Learn everything you can about lupus from excellent sources- You can always check out my "Important Links" page for some excellent Lupie sources.

4. Try to understand what the patient is going through:- Every person with an autoimmune disease has to go through the stages of grief. They will also have to fight their way through "The Chronic Illness Symptom Cycle". When you understand these stages, you can be a little more sympathetic. You can't help them figure this out, but you can be the support system they'll need.

5. Find the happy medium between babying and neglecting- There are some lessons every Lupie needs to learn, and if you baby them, they cannot learn this for themselves. At the same time, there will be times when they are just completely incapable of doing something, and they will need your help.

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Wednesday, November 14, 2012

My Life Is A Reality Show

Day 14 of WEGO Health's #NHPBM is here and we were given two choices: How to deal with negativity or My Life is a Reality Show.

Originally I was going to write about dealing with negativity, but then I read some blog posts where the authors were very obviously "hating" on each other. I was disappointed that people in my community were behaving that way, and I was thankful I had never experienced it directly.

Conquering Lupus

Characters

Me (Megan), my immediate family, my boyfriend, and my best friend

Plot/Premise

In the prime of my youth, I got Lupus. On top of learning how to deal with college, money, relationships, new independence, jobs, and everything that comes with your 20-somethings, I must learn how to manage my Lupus and stay healthy.

After newly turning 21, I go on all the adventures I couldn't have when I wasn't old enough. I learn to strike the delicate balance between my new drinking experience with life challenges: Lupus, relationships, college, and trying to break free of financial dependence on my parents.

The season would start off with a visit to my Rheumatologist.  We discuss Lupus and some warnings about things I'll have to be careful of with my new exposure to alcohol. After that we show my 21st birthday where I drink my first alcoholic beverage!

The season goes on to show me working through college, dealing with my parents (who, at times, forget that I am an adult and do things like ground me), friendships, raising awareness, and trying to knock off some of the crazy items on my bucket list.

Yes, I have a bucket list. 100 items that need to get finished off.

Number 1: Pet or feed a hippo.
Hollywood Sign
Hollywood Sign (Photo credit: Wikipedia)

The Set

Set at my house, my work, and various places in the LA area.

Why People Should Watch

I can relate to millions of people. I can give hope and raise awareness for individuals with chronic diseases. 

Television needs a reality show like mine. We have enough Jersey Shore and Snooki and Honey Boo Boo. 

There is nothing on television that reflects a huge portion of society, the average citizens dealing with regular problems, on top of consequences from our toxic society and genetic problems. There are few docu-style reality shows that fit this criteria and are inspiring yet entertaining.
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Tuesday, November 13, 2012

The Lupus Book By Dr. Wallace

Day 13 of WEGO Health's National Health Blog Post Month focuses on my favorite topic of all: books. Specifically "Book report. What’s your favorite book and how can you tie it to your health or life?"

Well, I own over 300 books. Since I've gotten rid of all the books I didn't want to read again and again, I struggled to pick just one book.

The Lupus Book: A Guide For Patients and Their Families

The Lupus Book is the ultimate guide for Lupus patients. If you have a question about Lupus, this is the book to read. I have learned so much from this book I'm an expert on the topic. And as long as I have Lupus, this book will stay relevant.

Did you know only joints lined by synovium can be affected by Lupus? No? Well you can read all about it in the chapter about Arthritis. It even has pictures! Want to learn about skin problems? It's in there. Liver? Check. Some background history on Lupus? That's in there, too.

Babe Ruth, full-length portrait, standing, fac...
Babe Ruth, full-length portrait, standing, facing slightly right, in baseball uniform, holding baseball bat. Facsimile signature on image: "Yours truly "Babe" Ruth." (Photo credit: Wikipedia)
When you really want to know what's going on in your body, this is the book for you. And it's written by a doctor whose history speaks for itself. He is the real deal. Dr. Daniel J. Wallace is like the Babe Ruth of Lupus. He's written textbooks on the subject, he's the founders of Lupus LA, and his Curriculum Vitae is as long as my arm. Probably longer because my arms aren't that long.

Dr. Wallace

On top of being one of the top lupus know-it-alls, he's the doctor who diagnosed me when no one else could.

Ever since my pediatrician retired, I've been very distrustful of doctors. When six months of doctors came up with no answers and new worries, I wasn't sure I was going to find a doctor who could diagnose me.

 I think what helped me start to trust him, before I got to see just how knowledgeable he is, was the shelves of books in his office.

Most doctors have books in their offices. It's like a standard practice for most doctors to have at least a bookshelf, usually behind their desk, full of books on their expertise. I should know because I've seen enough of them. But in most doctors' offices, or most other professionals, the books look unused. Like they're just for looks.

Not in Dr. Wallace's office. His books looked well-read. 

I bet you're thinking "So what?". I mean, who really cares if a doctor likes to read books?

 If a doctor is willing to read through a book to look something up or confirm an initial suspicion, or for whatever reason he chooses to pick up the book,  and to look through it enough times that it looks used, it shows he is taking the time to make sure he is doing his job correctly. It means he isn't stopping his learning or relying on his brains just because he has a degree hanging on his wall. Some very nice degrees, might I add. VERY nice degrees. It shows that he wants the best for his patients.

And he's not afraid to tell his patients to go see a specialist in a certain field when they need it. He doesn't pretend he has all the answers. That is a sign of a good doctor. A doctor whose primary concern is the health of the patient. I wish there were more doctors like him.

I trust Dr. Wallace with my life, not because I have to or because the books in his office look used, but because he has proven to me time and again that he knows what he is doing. In a world where I have to tell Urgent Care and ER doctors and nurses what Lupus is, having someone who so thoroughly knows what they're doing is the most comforting feeling in the world.

And In Case He Ever Sees This...

(Which I hope he doesn't because it would make me feel awkward knowing he knows how much I appreciate him. It's a pet peeve of mine. Strange, I know.)

I am so grateful that there is a doctor out there who cares so much about his patients. I love knowing that if I send a quick e-mail expressing my concern over some new symptom, I will get a timely response. I love that I never have to wait long to be seen. His staff are the nicest individuals. And the woman who draws your blood in his office is probably the best in the world. It is always the least painful blood-drawing I have ever had. I no longer start to cry when I get my blood taken. Instead I can sit there in mild discomfort with my insides wiggling like worms. I like the fact that I can't weasel my way out of shots I need like I can with other doctors. He doesn't let me skimp out on treatment just because needles remind me of snake fangs. 

Except steroid shots. I would rather suffer than get that pain in the a** (literally). Why get a shot when they have those dose packs? And don't even try to tell me it works faster. I would rather go without and be miserable.

Anyways, I have to thank Dr. Wallace for being one of the best doctors I have ever had. He is one of the main reasons why I am so certain I will conquer in spite of.

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Monday, November 12, 2012

Attending School With A Chronic Disease

Today is Day 12 of WEGO Health's National Health Blog Post Month Challenge and the topic of the day is
"Call BS on something. What’s something that is just ridiculous?"

I am calling BS on myself.

Yes, this is me. And I am calling BS on myself.

I Failed College


I've been taking online classes for about 2 years now. TWO WHOLE YEARS. When I first started my online classes, I wasn't sick. I did not have lupus, yet (or rather it was hiding out in my body just waiting to step into the spotlight). I was living with a boyfriend and I needed to work and go to school, somewhere that was reasonably priced. That's why I chose PennFoster.edu as my college. I figured after I got a basic degree I could then do some small graphic design jobs so I could pay to go to my dream school, Art Center College Of Design in Pasadena.

When The Problems Started


A month after starting my classes through Penn Foster, I triggered my lupus. (Check out my bio to find out how) For the next six months I focused completely on this mystery illness. I had no idea what was going on with my body because it took six months to get diagnosed. For a long time I honestly believed I was going to die, which is partially why I ignored my schooling.

It seemed like I always had an excuse why I wasn't doing my homework. 

"I'm in too much pain to concentrate." 

"I'll do it when I feel better."

"I need to focus on getting myself better."

Plus a million other excuses. At the time, they looked very valid, but looking back I see that it was all BS! And when I finally started to buckle down I had 11 of 29 tests completed and less than six months to finish it all. Plus, I had started my new job so I was working 5 days a week or more. "Waiting until I felt better" turned out to be a stupid reason because as soon as I got reasonably healthy, I started working incessantly. I had created this mess that I had no idea how to get out of.

I ACKNOWLEDGE THE TRUTH...

I am lazy. 


I didn't realize how hard that was to admit to myself, but wow, that was hard to say. Just writing that released the emotions from the little wall I had built inside myself. I have no more fake excuses for my behavior. It was pure laziness. And for my laziness I must accept the consequences. I AM A COLLEGE DROPOUT.

This has to be my biggest regret in life so far. I shouldn't have left my schooling fall to the wayside. I was in bed most of the time, how hard would it have been to do my homework? I've been using my illness as a crutch. Oh god, I just want to crawl into a hole.

I don't think I can express how disappointed in myself I am. I can feel my disappointment in my toes and fingers and everywhere in my body. I'm trying not to get too disappointed because I don't want to trigger a flare. But then that disappointment turns to anger. Anger in myself for not doing all that I could. For using my illness as an excuse.

And now I'm feeling a new emotion. Sadness. Just...sad. I'm sad that I had to experience this at all. I'm sad that I let myself get in this situation. I'm sad that I wasn't as honest with myself as I thought.

What Happens Now?


I'm sure they'll give me another six months to try and finish this, but that doesn't stop me from being angry with myself. Or disappointed. Or sad.

But what if they don't? What will I do then?

Are you having trouble with school? Has your chronic illness gotten in the way of your education, or like me, use that as an excuse? Please let me know I'm not the only person.

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Saturday, November 10, 2012

The Funniest Thing

Cheaper by the Dozen (2003 film)
Cheaper by the Dozen (2003 film) (Photo credit: Wikipedia)
I've lived in two different states: California for most of my life, and Arizona for 2 years. I love to go and visit Arizona, which is where I've been for the past week. The difference between the two places is so noticeable  it's like jumping in a pool of ice water.

California

Where I live in California, everything is hustle and bustle. Traffic is always crazy. People are always in a rush. And the influence of Hollywood is pretty huge. Everyone tries to imitate their favorite celebrity and has to have the hottest this or that. But I guess that's just what happens when you're so close to Los Angeles. There are lots of museums, some of the best in the world, and almost everyone has seen or knows at least a minor celebrity. The twin boys that were in "Cheaper by the Dozen" went to elementary school near me. People really aren't that friendly, and getting people to be themselves is a huge challenge. They would rather be someone else. Everything is city oriented.

Arizona

I was walking around downtown, and someone said "Good afternoon. Isn't this weather beautiful?". I freaked out. Omg, this person is trying to kidnap me or steal from me or something similarly evil! Then it hit me. People here are actually friendly. Ignoring people as you walk past them, without giving them at least a smile, is considered rude. And no one's afraid of being themselves. You see some of the wackiest things here. Another thing I noticed, people here actually care. They care about politics, and the environment, and music, and whatever else they are passionate about. The conversations you have with people here are so enriching, I don't know how I was able to handle living in California for so long.

And the funniest thing of all: In Cali, I am considered weird or strange. But I'm not afraid to do "strange" stuff. But in AZ, I'm normal. It's hard for me to wrap my mind around, but it's true. In California, I get strange looks if I even smile at a stranger. People tell me I'm weird because I like to eat healthy and I love to read. I was in the bookstore where I was staying, and it was crowded! Can you believe that? And people actually use the library! I never see that in California. Ever. I'm usually one of maybe 5-10 people in the library or book store. I was so excited to see people taking such an interest in books.
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