Monday, September 28, 2009

Friday, September 25, 2009

Too Cool! So excited! Fall Grapes!

So have you ever seen grapes growing on the vine?

Like before they got picked and put in those bins and sent to the grocery store? Yeah, me neither. Seeing that I'm living in the wine country and it's harvest season I was beginning to think they* were making it all up. You know, maybe grapes are really grown on a truck, or they fall from the sky...hmm, that may be a bit messy to clean up...
Anyways, I saw them for the first time today! They're telling the truth I swear (see even I was starting to not believe them!
It was amazing! My mom and I were on the way back from Sacramento on the most gorgeous freeway (one that wraps through some of the prettiest vineyards) and I suddenly started seeing big purple bushels hanging from the bottom of the vines!
We immediately pulled over and I got out and ran over to take pictures (I had to show all my bloggy buddies of course!!)

It really was one of the coolest things and totally made my day!

The Proof:

* They refers to those people, you know the ones, the people who tells us facts growing up and later down the line, looking back we have no idea who told us it. Those people who expected us to believe these facts without giving us the cold hard evidence. Yeah, those ones.


Hoping your day is full of happiness thats as good as grape juice!

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Wednesday, September 23, 2009

Happy Fall!!

Happy Fall!

This is such a wonderful time of year! I love the summer but I really enjoy all the changes that fall brings. I'm excited to see Fall here in the wine country for the first time! So far, each season has brought such uniquely different and yet wonderful beauty!
Last Fall I was living in Virginia, enjoying being in a place where, for the first time (well for me anyways!) I got the immense pleasure of watching the leaves turn every color imaginable and then drift gently, floating through the air as the leaves began to fall. Ahh, and the perfect crisp, crunching sounds of feet walking through the piles of leaves on the ground.

Walking to class today I passed a tree and saw these beautiful leaves where the sun's rays were shining through the branches, lighting up every vein from above.
Today I also got the incredibly smile causing surprise when I went out to the backyard and found that the sunflower's (that Eva gave me the seeds for) first bloom opened up!
It's going to be a wonderful Autumn!!

Fall 2008



(First Day of) Fall 2009



Here's to a season of absolute beauty!!
Happy Fall!!

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Saturday, September 19, 2009

A (Rambling) Update (with Pictures)

Getting the PICC in.

In the hospital.

My antibiotic (full).

Antibiotic-shrinking.

Antibiotic- and shrinking.

Antibiotic-all done.

My view of the hallway.

The PICC.

The pretty wall in the room in the ER I was in for 20 minutes.

After 11 hours in the ER. (Someone giving me a test said "you look like you've already been through a lot tonight"...Yes I had.)

I had a gorgeous PICC line put in my left arm on Tuesday after they tried to put it in the right arm, the vein started spasming and they had to take it out and try it in the left arm a few hours later.
By Thursday I had really bad chest pain in the right side of my chest that continued to get worse with every dose of antibiotics. (Which was once over an hour every 24 hours.) I spent the day at the doctor (from 10:30am to 4pm) seeing the doctor and getting an ultrasound to make sure there was no blood clot. The results came out normal so they gave me a shot of Toradal for the pain and sent me home.
The pain continued so Friday morning I called in to the doctor that originally ordered the PICC line (the infectious disease doctor) and he said to go to the ER on a non-emergency visit to get a CT scan to just make sure that there was nothing else going on.
Because the pain was on the opposite side of where the PICC is and is on the side where they'd tried, it was unknown if something was damaged or bruised in the process or if the tip of the PICC was in the wrong place.
I went into the ER at 4 and was in a room by 4:45 because they had to decide if I should take my 4:30 dose of my antibiotic or not. (Which I ended up doing but not until around midnight.)
After a quick EKG I was stuck on a bed in the hallway (which is where I stayed for the next 9 hours). During that time I had a video x-ray with contrast dye (to make sure the PICC wasn't leaking), a chest x-ray (to make sure it was in the right place), and a chest CT scan with more dye.
Each time they used the PICC line the pain got worse and worse. I finally was given pain meds (Morphine, Toradal and Phenergan shots) at midnight.
At midnight they decided to stop using the PICC (on my left arm) and put in an IV in my right arm (so I couldn't lean in either direction). That's when I had the CT scan done.
From 1-3:00am I was put in another room where I stayed until they knew the results of the CT.

I also have to add that I've never been in the ER where more people were throwing up. Constantly!! Not a good thing for someone with a severe phobia of throwing up...I had my ears plugged listening to my iPod and my eyes at the wall the ENTIRE time!! I am SO glad the battery lasted the entire time!!
(Any suggestions of calming music are welcomed! I listened to the same CD on repeat the whole time.)

I got home at 3:30am with a bottle of Percocet and a strong want to lay in my own bed.

Today I woke up at noon and had a rash from head to toe, a droopy eyelid and the lack of ability to see straight. It's gotten worse all day (Benadryl not helping at all) and towards the end of the day waves of intense nausea came on. I did get a couple hours of sleep in the middle of the day though.

I'm relaxing in bed now, trying not to worry about all the homework I still need to do and hoping that there isn't another trip to the ER on the horizon (neither tonight or anytime soon).

Ugg, an all day doctor visit, an 11 hour ER trip, and lots of pain=a long, not so fun weekend.

I did get my necklace from Self Symmetry that I got a huge discount on thanks to Amy's giveaway, yesterday which was wonderful to see in the mail! It's beautiful =].

Hoping tomorrow will be wonderful,

Monday, September 14, 2009

Wish Me Luck--Aah!!

I have a completely reasonable fear about getting this PICC line put in.

A PICC line is a Peripherally Inserted Central Catheter, it is threaded up through a vain to the heart.

The last time I had one put in, June of 2007, it was put in while I was in the hospital. The nurses who put the line in for me told me to make sure not to let anyone use it if anything happened to it such as if it came out even a little.
The next day the line got caught on my hospital bed as I quickly sat up and close to 6 inches of the PICC line got yanked out my arm. Let me say, excruciating pain!! The most painful thing that I can ever remember happening.
Of course I had an awful doctor who wanted to use the line even though it was hanging halfway out my arm!
He was convinced that I had pulled it out myself and to "teach me a lesson" he wanted to still use it that way.
Then when I started freaking out (why in the WORLD would I purposely put myself through that!?! AND then lie about it!?) he was convinced I just had anxiety and that was what was causing me to freak out so he wanted to just fill me with Ativan (anti-anxiety medication)!
This event was the first time I'd ever had a panic attack and was the beginning of my Panic Disorder.
Thankfully my mom was in the room the entire time (this event wasn't even the half of it) so she wrote a detailed letter that ended up getting this doctor yelled at by his supervisor in front of all of the doctors at a meeting.


So after this event (I still have the scar from it) I am terrified of tomorrow's 10:30am appointment in the injection center. I know that what happened to me isn't normal but I'm still incredibly worried.

...aah!..

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Sunday, September 13, 2009

Happy Invisible Illness Week!

Invisible Illness Week is Monday through Friday of this week!

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is:
Postural Orthostatic Tachycardia Syndrome(POTS), IBS, Anxiety(Panic Disorder) and the doctors are currently trying to diagnose what else is wrong.

2. I was diagnosed with it in the year:
IBS in 2000, Panic Disorder in 2006 (set off by a traumatic hospitalization) and POTS in 2007

3. But I had symptoms since:
Some for as long as I can remember and others, new ones, appear daily.
The most disabling conditions, the ones from the POTS, started around January of 2007.

4. The biggest adjustment I’ve had to make is:
Not being able to be a normal college student and having my independence taken away(living at home, not being able to drive, having to have my parents constantly remind me things).

5. Most people assume:
that I'm healthy, I put a convincing face on.

6. The hardest part about mornings are:
Finding the energy to get out of bed and stay standing.

7. My favorite medical TV show is:
Mystery Diagnosis, partly because my life is just that.

8. A gadget I couldn’t live without is:
My laptop(the bloggy world) and my iPod(I love music)

9. The hardest part about nights are:
Lying in bed, finding a position where I'm not in excruciating pain.
And only getting around 6-7 hours of sleep a night.

10. Each day I take:
No less than 2 pills and that's on a really, really good day. I sometimes take as many as 30.
I also wear a patch and (self-inject) 1 injection weekly.

11. Regarding alternative treatments I:
have tried everything. After so many, "I don't know what to tell you"s, I'm willing to try whatever I can to find relief.

12. If I had to choose between an invisible illness or visible I would choose:
They both are awful and each carry their own hardships and I wouldn't wish either on anyone.
With invisible illnesses it's isolating and tough to get people to believe you, with visible ones, it's hard to be treated differently.
I'd much rather choose to be healthy.

13. Regarding working and career:
I currently work one day a week and go to school full time.
"Sick days" have to leave me completely bedridden to stay home.

14. People would be surprised to know:
How many times a day I get looked at as if I'm lazy because I constantly have to sit down.

15. The hardest thing to accept about my new reality has been:
the isolation and loosing my once amazing memory.
Also, that if the POTS doesn't clear up in my twenties, I'll most likely be stuck living with it for the rest of my life.

16. Something I never thought I could do with my illness that I did was:
Move across the country by myself.

17. The commercials about my illness:
are pretty much non-existent.

18. Something I really miss doing since I was diagnosed is:
Dancing for hours on end and singing without damaged vocal cords(from so many antibiotics) and without running out of breath every 3 words.

19. It was really hard to have to give up:
Friends and being able to live on my own in college.

20. A new hobby I have taken up since my diagnosis is:
Blogging.

21. If I could have one day of feeling normal again I would:
Dance and sing.

22. My illness has taught me:
My illness is just one part of me and is not how I have to define myself.

23. Want to know a secret? One thing people say that gets under my skin is:
"But you don't look sick." and "You're overreacting."

24. But I love it when people:
Tell me they care.

25. My favorite motto, scripture, quote that gets me through tough times is:
"When the world tells you to give up, Hope whispers...Try it one more time."

26. When someone is diagnosed I’d like to tell them:
Push the limits of what you think you can do. Don't play it too safe and give up your life, secluding yourself from the outside world. Keep living.

27. Something that has surprised me about living with an illness is:
Not having doctors understand. I've only ever come across 3 doctors who've even hear of what I have and none that know enough to help me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Come up to me and tell me I looked like I needed a hug and comforted me.

29. I’m involved with Invisible Illness Week because:
Too many people feel like they're alone in the struggle with a debilitating illness.

30. The fact that you read this list makes me feel:
Hopeful.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com


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Friday, September 11, 2009

Losing hope after a long week...

Part of the reason I havn't been posting very often lately is that I've just been trying to cope with different things going on and I havn't wanted my blog to become a depressing place.

I've realized that that's the point of a blog though, to not have to hold things back when you don't know where else to turn.

So here goes..

I'm losing Hope.

A few examples of why?

For starters..
A week ago, thursday morning I had my Theatre 2 class. I walked into the Auditorium (where the class takes place) at 9:01. Now you should know that I'm not one to be late but I live a half hour away from the school and with all the construction going on there's random days where there's more traffic. So, the class started at 9 and walking in at 9:01 the teacher shouts out, "You're late, take out your homework, write late at the top of it and grade your own. You're also getting no credit for it." (Note that this is a teacher who's never cared when people walk in 45 minutes late to class.) At this point I was upset after I'd spent hours on the homework and even taken it to the teacher the class before to clarify parts of the homework. (I also got 100% on it along with the extra credit portion of it.)
Then he announced that we'd be doing a scene with a partner, rehearsing 2 hours outside of class and then preforming it the following class. He told everyone to stand up that had recieved 100% on the test the day before (which I had) and then who got 100% on the homework. About half the class stood up. He said that those people got to choose their partners first so they knew that they'd be able to rely on people who also work hard. Everyone started pairing up.
Suddenly I realized EVERYONE in the class was paired up but me. The teacher stuck me with a group of two other people and told them that I'd do whatever they wanted me to and I'd work with their scheduale.
20 minutes later after having all of the ideas I gave shot down and called dumb everyone had their lines memorized except for me because my "partners" wouldn't include me. Then, my "partners" flat out said they didn't want to work with me and that they were angry that the teacher was making them. Literally in those words. (Note, this is in a COLLEGE class, one of these women was around 19 and the other was around 30-Also, they'd not said much to me, nor had they seen me act so it couldn't have been about that.)
I was really hurt. These were two people in the class that I thought were really nice and had been excited that if I had to be stuck into a group that these were the people I'd been stuck with.
I told the teacher that they really didn't want to work with me so after some negotiating with him, he allowed me to work with another group. In the end that group worked out well and the performance wen amazingly. We even had someone rate our scene as their favorite out of the 20-something that were preformed in class.
The point is that I thought we were past that. That was a big reason why I love college.
The other thing that upset me about the situation was the fact that after it happened I really needed someone to be there for me but when thinking which of my friends I could call that would be there for me, I couldn't think of any. Then when I called one anyways, they listened, said "okay" and then started in talking about themselves.

Secondly, the next day I had an appointment with an infectious disease doctor.
I'd been waiting for this appt. for a few weeks. For those who are new to my journey, I've now had a staph infection for 6 weeks now. I've been on a couple of antibiotics that hadn't done anything and it was continuing to spread. I've also been getting strange rashes all over my arms and legs quite often and the joints in my hands are incredibly swollen and developing blister type things on them.
My primary care doctor has given up on me because I'm not an open and shut case. She's an amazing doctor but at this point she's frustrated past her limit because she doesn't know what to do with me.
So this Infectious disease doctor saw me and thought that the lesions all over my body didn't look like a staph infection. He thinks it's an auto-immune disease, he's not sure which one though. He said to stop the creams and hibiclens which weren't currently doing anything for me anyways. He was afraid of two things it could possibly be so he wanted me to be sent immediately down the hall to dermatology for the lesions to be biopsied.
I went down the hall and a second copayment later I had the dermatologist (and a second one who the first wanted a second opinion from) tell me they thought it was just a staph infection and to use the hibiclens and I'd be fine. No antibiotics or biopsy needed either.
After feeling as though I'd just been spun in a circle back to where I started I went back to the infectious disease dr.
After a teary explination to the doctor's asst. about what had just happened, being given two polar opposite directions to go, I was allowed to talk to him for a couple of minutes.
I told him what happened and he told me he'd just gotten off the phone with the dermatologist and that was not what had happened at all.
Mmhmm. Yeah.
The infectious disease doctor ordered a chest x-ray and a ton of blood tests. 3 hours, 13 vials of blood and an x-ray later I went home.
Then this week I found out the results came in but the results were sent back to my primary doctor.
She got angry when I emailed her for them (probably because she thought she'd successfully passed my case onto someone else.)
She said the results were normal.
Back to square one...again.
Today, after being on the phone with the doctor's office for a couple hours, a phone appt. was made for later in the day.
The doctor called an hour and a half after the appt. but at least I was able to talk to him and tell him how frustrated I was and that I needed to do something because what I'm doing isn't working.
He confirmed that the results of the tests were normal but that a culture that had been done confirmed that I had a rare kind of staph.

Which brings me to another highlight of my week..
I'm getting a PICC line put in hopefully as soon as Tuesday and after a 7-day round of IV antibiotics(which may or may not work), I'm having a skin biopsy done to see if they can figure out if there are any signs of something autoimmune going on with the lesions. Because what's going on doesn't make sense to them and nothing is adding up.

The only thing that's kept up my Hope right now is what happened to my uncle the other day.
He narrowly escaped death.
There was blood in his stool and the next day he had to call my aunt to pick him up at work. He was almost too weak to even make it to the car.
He was taken to the ER where they found he was bleeding internally.
After a bunch of tests and a surgery they found out he had something very rare between his stomach and his intestines. It was like an ulcer but while an ulcer goes inside this thing went outwards. It caused a blood vessel or artery to burst that mad it so he was bleeding directly from his heart.
They were able to clamp the thing and then watch him closely in the ICU for a couple days.
He's still in the hospital but no longer in Intensive Care and looks as though he's going to be okay.
Apparently, if he hadn't come in, the doctors don't think he would have made it through the night.


All in all, it's been a hard week. It made me realize how lonely I really am right now. I have many friends that I'm there for all the time but realized that I have none that are willing to be there for me when I'm really needing someone to lean on. Also, still being new to the town, not knowing anyone around here, I just felt more isolated and down then I have in a long time.

The illnesses that plague me are invisible. Most of them can't be seen. Just by looking at me, I look healthy.

It's hard for people to understand how to be friends with me when I can't often make plans ahead of time because when I do, I have to cancel them at the last minute because I'm in so much pain I can't move or get out of bed.

It's hard not being able to keep up with my peers. For example, I almost pass out when I climb a flight of stairs and my pulse reaches close to 200 beats per minute and it won't go back down to normal for a half hour or so.

It's hard for me to not be able to dance because I feel so horrible all the time and I get incredibly dizzy, falling over and almost passing out when I exercise (and sometimes even when I'm not exercising).

It's hard to remember what having a social life feels like.

It's hard to forget the name of my favorite song, or forget the question right after a teacher calls on me due to "brain fog".

It's hard to realize I may never be "normal" again and to accept this as my life.

It's hard clinging onto Hope when that's all that's left.

It's hard.

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Monday, September 7, 2009

New blog header!!

So I've never done anything quite like this but felt like it was time for a different look! What do you think?

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Thursday, September 3, 2009

Thursday Thirteen #9


I know I haven't been posting much and that I certainly haven't posted a Thursday 13 in a long time but with such a busy schedule I'm trying to sneak some time into the blog world.

Thirteen Pictures I Took at the Beach Last Sunday

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

Love, Hope, and the wonderful start of a new day,

Wednesday, September 2, 2009