Thursday, December 27, 2012

Being Sick and Some Emergency Room Tips

I am just feeling horrendous. I had the sniffles from the 22nd, but yesterday I was at my worst.

The Flu

The day after Christmas, I woke up feeling terrible. I had a very bad fever. I'd go from extremely hot to freezing cold. I was shivering so badly that my jaw still is still sore. Then around 11 am, I started throwing up, then I would go to sleep, and then every time I would wake up I would throw up again. About once an hour. Eventually it got so bad I had to call my mom home from work so she could drive me to the ER. 

The Waiting Room

Mom and I sat in the waiting room for ages. I'm not sure how long it took, because I fell in and out of sleep, but I know it took longer than an hour. The worst part were the other people in the waiting room. There was a whole family in there speaking very, very loudly in Spanish. And when they weren't talking, they were listening to music on their phones very loudly. Then, this mother with her sick baby sat next to me, and the first thing she did was get on her phone and start calling everyone she knew to tell them about her baby. Thankfully, she sat somewhere else after I ran to the bathroom to go throw up.

My Mother, The Hero

My mom was great. She kept asking the nurses if they could hurry and see me because I was rapidly getting worse and have Lupus. Unfortunately, all the hospitals in the area were filling up, so they kept sending people to the ER I was at. We had to wait for a bed to empty. When the Urgent Care by my house started to open, my mom kept asking family members to go see how crowded it was, but no one was close by. So she asked the nurse if there was anyway I could get a bed in the hallway or a bag of saline solution so they could get me stable.

There was a bed in the hallway available, so they let me lie on that while they checked my vitals. My heart rate was extremely high and I had a fever of 101. You should have seen the nurse's face when he saw my heart rate. He had a shocked look on my face. That's probably why they wanted to give me an EKG. They gave me some aspirin or whatever it was to bring down my fever and wouldn't let me wear my jacket or a blanket, even though I was freezing. Which was a good idea with my huge fever.

The Doctor

Eventually I got my own room, and apparently I slept for a few hours. It felt like a few minutes, but my mom told me some nurses had checked up on me and said I wasn't dehydrated enough for some saline. Soon after that, the doc came in and had me checked out. I had the flu, but he also said I have a throat infection, an Otitis Media with Effusion (fluid in the middle ear). This probably has something to do with the Eustachian tube problem I had a while ago with the sinus infection I had.

Treatment

I have a lot of new medicines because of this little hospital trip. Every three hours I alternate between Motrin and Tylenol, then I take Clindamycin (an antibiotic) three times a day, along with Zofran (an anti-nausea medicine that works by blocking the body's production of serotonin) three times a day if needed. At least today I've been able to eat.

And in an hour, I'm leaving to go visit a doctor in my area. I'm hoping he's a good one because I hate driving so far to see my Rheumatologist for everything.

Some ER Tips To Remember

1. If you are really sick, sometimes it is better to just call an ambulance so you don't have to wait hours and hours for care.

2. If you are waiting in the waiting room, and you are getting worse, it is okay to ask to be stabilized (especially if you are like me and when you get sick you go from okay to hospital status in a matter of hours or sometimes an hour).

3. Stay hydrated. Hilariously, I was too hydrated to get a saline bag right off the bat, but I was still pretty dehydrated. My mom and I were joking that I shouldn't have had so much to drink, but I knew it could have been a lot worse if I hadn't had that fluid in my system.

4. If there are people being excessively loud in the waiting room, it is okay to ask the receptionist to ask them to keep it down. Waiting rooms for the ER are not for get-togethers, they are for sick people and family of sick people. Also, do the same for others and remind loud family members to keep it down for the people who might not be feeling well.

5. Know the hospitals in your area and know when to go to an ER and when to go to an Urgent Care. That way, you can get the best care for what you are going through and you don't take away from someone who needs it more.

Any ER tips I don't know about yet? I could always use some advice.

Enhanced by Zemanta

Monday, December 17, 2012

Smoothie Video

Thought you guys might like to watch a silly video I made:



This is how I make breakfast in the morning, minus the talking to myself.

Saturday, December 8, 2012

Trouble Comes in Three

This post has nothing to do with Lupus. Or at least I think so. I'm kind of confused.

Waking Up


My problems started as soon as I woke up. I was a having a dream about WWII sort of, and Japan had just dropped a nuclear bomb within view of my little wood house. In the middle of all that, I woke up. In a pool of blood. It was very disgusting. Very, very gross.

Turns out I had my period? But my period ended last week. Literally seven days ago. So Idk. The internet is not helping me out at all, either.

Since my body decided to make a big, bloody mess I had to wash my clothes and my sheets. I decided to add a little bleach since they're white. But I added too much, and it splashed all over me. And now I have a minor chemical burn on my hand and my foot is still stinging even though I almost immediately rinsed it off.

While I was rinsing the bleach off my skin, I realized my phone was missing. I checked all over my room. I looked under my pillow, peered under my head, checked my desk. It was nowhere to be found.

"OH NO!"


I ran as fast as I could into the laundry room. I pawed at the washing machine trying to get the water to stop pouring in. I opened the lid to see it is already filled to the top with water. I plunge my hand into the bleachy/soapy water and dig around until I find my phone. 

By this time, I feel like crying, but I find some rice and fill a plastic baggy with it. I hope it will help, but I have a feeling this might be the end of the line for my phone.

THE RESULTS


I have no phone now. I have to go to work. And make my bed once I get home. And the whole period mess thing. 

On top of that, on Monday I have to call a doctor to see if I have a UTI and explain all the other strange stuff that has been going on with  my health. I have really, really bad fatigue. I didn't have the energy to even eat yesterday. I sat there propping myself up using my fork. I probably looked really pathetic. And I've also been having really bad pain all over my body. It's just been a bad past few days.

Thursday, December 6, 2012

Chronic Dehydration

(From source) This cholera patient is drinking...
(From source) This cholera patient is drinking oral rehydration solution (ORS) in order to counteract his cholera-induced dehydration. The cholera patient should be encouraged to drink the Oral Rehydration Solution (ORS). Even patients who are vomiting can often be treated orally if they take small frequent sips. Their vomiting will subside when their acidosis is corrected. (Photo credit: Wikipedia)
I've been doing a lot of research on Chronic Dehydration, and most of it seems like phony baloney designed to get you to buy something. I don't like phony baloney and I'm sure you don't like it, either.

But the idea of Chronic Dehydration makes a lot of sense to me. When I get sick enough to go to the ER, I usually "drink" about two bags of the saline solution. This just shows me that I'm not as hydrated as I think I am. And after "drinking" the two bags, I always look and feel much better.

So I took to the inter-web looking for sources I could trust, at least somewhat.

I started off at the Mayo Clinic's website with dehydration. My eyes immediately zoomed in on this sentance:

"Anyone may become dehydrated, but young children, older adults and people with chronic illnesses are most at risk."
Oh hey, that's me. (I'm not talking about the picture. That is definitely not me)

Then I looked up what your body uses water for. (Again, from the Mayo Clinic).

Water helps with:
  1. Regulating body tempurature
  2. Moistens tissues like mouth, eyes, and nose.
  3. Helps flush out wastes in kidneys and liver
  4. Prevents constipation
  5. Dissolves minerals and other nutrients for body to use.
  6. Carries nutrients and oxygen to cells.
And I have a feeling there are plenty more uses for water in the body. For example, when you go and get drunk, what should you do? Drink water. Why? So you don't get a hangover. When your brain cells are dehydrated, they shrink. And alcohol is excellent at making you dehydrated.

How To Cure Chronic Dehydration

For mild (not severe and life-threatening) chronic dehydration, the simple, easy cure is to drink water! What, seriously?! 

But it turns out not every beverage has the same hydrating effect. Why? Because drinks that aren't pure water have to be filtered in the kidney and liver to turn it into water your body can use. And the liver and kidneys need water to function (see, I knew there were more uses for water). So the closer to pure water you can get, the easier time your body is going to have using it for the greater good.

So What Should I Drink?

Just plain water. I know a lot of people can't stand the taste of water, so it is okay to add a little, itty bit of juice to your drink. But really, you just have to train yourself to like water. It took me a couple of years to like the taste of water, but now that's pretty much all I drink.

You can always try fruit infused water. Or make fruit ice cubes! Just slice up some fruit, drop a few berries in, slice up a cucumber and let your water soak up the flavors. Or for the fruit ice cubes, get an ice cube tray, drop a berry or some sliced fruit in, let it freeze. Once you're ready to have a glass of water just pop a few in and enjoy.

I haven't tried this, so I'm not sure if it will have the affect I'm thinking of, but maybe you could try boiling the water before adding them. Make a (tea) with it.

Speaking of teas. They say green, black, and Oolong tea are not very good at hydrating you. I'm not saying green, black, and Oolong tea aren't good for you. I'm just saying they aren't great for hydration purposes. It goes back to your body's filtering process. When I told my dad this, he almost had a heart attack. He loves to drink green tea at work and he'll drink it all day long, so he figured he was getting enough hydration. Then he spewed off some green tea facts, and I had to remind him what I told you. 

How Much Water Should I Drink, Megan?

Well, the common consensus on the internet is to drink half your weight in ounces. (Some of the water can come from food, but the way most food is prepared, there isn't much water left for your body to use). 

Lets say a person weighs 150 lbs. That means they have to drink 75 ounces of water. An easier way to think of it is they would have to drink a little more than 2 liters of water throughout the day to get hydrated. (Oh, and so you can calculate how much you would have to drink, 1 liter = 33.814 oz.)

And if you exercise, are in very hot and humid weather, or are sick you will have to drink even more water to keep yourself hydrated. 

Random Facts

Did you know your body loses water just from breathing? Yup.

Did you know that exercise-induced asthma might be caused by the loss of water in the airways? Yup, got that fact from the National Center for Biotechnology Information.

Drinking water can help you lose weight. How? Like I said above, you can get some of your water through eating. When your body is telling you that it's hungry, it might really just be thirsty and trying to get you to eat something to help it hydrate. That's why they suggest you drink some water before you reach for something to snack on.

How This All Started

Well, it started in the ER a while ago, but I was inspired by an excerpt from the book Water For Health, For Healing, For Life by F. Batmanghelidj. I'm not sure I completely trust this source. I think he might be sort of right, but I'm not sure all his claims are accurate. You can read the book and decide for yourself whether or not he seems like a reputable source, but I am still on the fence.
Enhanced by Zemanta

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?





Enhanced by Zemanta

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.

Enhanced by Zemanta

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.
Enhanced by Zemanta

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.

Enhanced by Zemanta

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.
Enhanced by Zemanta

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.

Enhanced by Zemanta