Falling Apart At The Seams: My Life With Ehlers-Danlos

Employed?

2012-01-05T19:09:00.000-06:00

I may have just acquired the most bizarre, yet amazing job ever. Will be going tomorrow to register as a business, just so I can get access to certain things for now. Probably going to have to put my product review blog idea on the back burner and start a second blog about my work.

It's nothing you'll ever expect.

Be prepared.

Happy Birthday To Me

2011-12-10T19:22:00.002-06:00

I have officially survived 23 years.

Super Thankful Thanksgiving, Family Friends Lose Everything In Thanksgiving Eve House Fire

2011-11-25T16:54:00.000-06:00

On the eve of Thanksgiving, some family friends were at home when a smoke alarm went off. They managed to call 911 and get out, however their dogs were trapped inside. The house burnt to the ground.

Video of the fire.

Photos of the fire.

This morning, they were sifting through the rubble when they found both dogs, alive, in the basement! However, everything else in the house was lost. The family has three kids, all still in school. Here's a link on how you can help, including a number you can call if you'd like to make a monetary donation:

Help the Haslett-Marroquin family.

Pass their story along to as many people as you can!
Thanks!

Help Me Win Some Toys For My Pups!

2011-11-04T17:18:00.002-05:00

I entered Mika in a contest to win $200 in toys and gift cards, because we could really use it. If you feel like helping, here's how:

1. Follow the link: http://www.facebook.com/dogster?sk=app_285858081435238&app_data=1926
2. Allow the app
3. Repost the following on your blog & facebook:

Help Mika win a stash of bones in the Dogster/Doggyloot.com contest! All you have to do is follow the link, allow the app, and vote on Mika's picture, titled "Pizzletastic!", then pass this note on to your Blog & Facebook friends if you'd like! Thanks so much!
http://www.facebook.com/dogster?sk=app_285858081435238&app_da ta=1926

-----------------------

We'd really appreciate the help, she's currently in 11th place!

The House of Broken Bones + Update

2011-11-03T19:23:00.000-05:00

That's what it's been around here recently, and it has me fearing for my bones!

On Tuesday my little brother and some of his friends built a catapult at school and were launching gourds. My little brother happened to be looking at the launcher when someone jumped on it, launching a gourd into his face. After some discussion, my mom and sister stayed home while my dad and I went to the ER with my brother. After pushing for an xray, it showed my brother's nose was broken. He's probably going to have an appointment with the ENT soon.

Meanwhile, my mom has had back problems for years. She finally made an appointment with a spine specialist and had her appointment today. Turns out she's had a broken back for years. She'll need surgery soon. So obviously I'm a little worried about who's next!

As for me, I took a pole dancing class yesterday and I have pole burn, bruises, and so many pulled muscles today.

Poll For EDS, Chronic Pain, Arthritis, And Fibromyalgia Sufferers! Please Pass It Along, The More Opinions, The Better!

2011-10-28T14:40:00.001-05:00

I am thinking about starting a second blog to review and suggest helpful products for EDS/Arthritis/Fibro/Chronic Pain, but before I take the plunge, I'd like your opinions. If you could please take the survey below, and then pass it on to anyone you know who suffers from chronic pain and ask if they could take it, that would be awesome! It's only a few questions and should take only a few seconds to complete.

Create your free online surveys with SurveyMonkey, the world's leading questionnaire tool.

Thanks so much, and I hope to give back!

Scary Morning Weather!

2011-10-12T19:13:00.000-05:00

This morning I let my dogs back in, it had been overcast since yesterday. Less than 10 minutes later, it became extremely dark outside. Seconds later it began pouring like I haven't seen in years, literally like a giant tank overturned above our house. Then, the sound. I looked outside to see this:

Hail!
I cringed as I thought would've happened if my dogs would've been outside, a mini Dachshund and a Chihuahua vs. dime to quarter sized hail. Luck was on their side today.

Welcome to the family, Mika!

2011-10-10T17:44:00.000-05:00

After three years of nagging, I was finally allowed to get another dog. Oscar is frequently bored and lonely, and could definitely use a companion, and my siblings wanted another dog, too.

After being rejected by one rescue over false info they refused to clarify, we finally found a good fit with a dog from Midwest Animal Rescue and Services!

So here she is!

Name: Mika
Breed: Chihuahua
Age: 11 months (we're putting her birthday at October 31st, 2010)
Weight: 9 pounds!
Color: Fawn with a couple dark patches on her tail and bum, and white toe socks

She is amazingly cute, you can learn more about her here:

#1 dog site for dogs & bipeds!

Also, I don't really have the cash to get her any cute outfits, and she's going to need them, as it's starting to get cold around here. So if you have any doggie outfits in size Medium, or other accessories that you no longer want/need, send me an email at jelsen@hotmail.com, because they'd be of great use to us!

I leave you with a video of Mika playing with a toad

STOLEN! Update

2011-10-10T17:20:00.000-05:00

So, we gave up on the recovery of my original games. They are long gone. However, my parents have been kind enough to replace the games I lost. Now I just have to get the items and Pokemon I lost back. I will post the list again, and if you're willing to trade or can help in any way, please contact jelsen@hotmail.com

Thanks for the help and support!

Pokemon:
Celebi
Shiny Suicune (from B/W gamestop event)
Shiny Raikou (from B/W gamestop event)
Shiny Entei (from B/W gamestop event)
Spiky Pichu
Pikachu Colored Pichu
Shaymin
Arceus
Deoxys
Mew
Phione
Manaphy
Darkrai
Victini
Zoura
Zoroark

Items:
Oak's Letter
Liberty Pass
Member Card
Secret Key
Enigma Stone

STOLEN! FAQ

2011-09-12T12:42:00.000-05:00

First off, to those of you sent here via Twitter, either from Neil Gaiman's feed or someone else's, welcome!

Now, I've gotten some questions about my previous post, and I will answer the most common ones here.

Q: Why didn't you file a police report?
A: First off, I didn't discover that my games had been stolen until several weeks later, as I had decided I was going to take a break from playing my DS for a while. Second, we are under Sheriff's department jurisdiction, and they're not so nice about small thefts like this, unfortunately.

Q: Why not just use an emulator?
A: Because I like having physical copies of the game. My DS is portable, easier to use, and made for these games. I don't want to have to use a computer to play it.

Q: Why not just buy new copies of the games and use Action Replay to get your stuff back?
A: I don't really have the cash to buy $150+ worth of games again, and using Action Replay is not only cheating, it can also damage the games, as it is not a liscenced Nintendo product. I got the games originally for the challenge and fun of working towards the goals in them, I'm not going to cheat just to catch up.

If you have any other questions, feel free to email me at: jelsen@hotmail.com

STOLEN! A Disturbing Trend Hits The Disabled Community.

2011-09-11T15:08:00.012-05:00

It started with a story.

Specifically, this story about a disabled McDonalds employee who was duped, and had $5000 worth of his Superman collection stolen. In a follow-up piece today, it was reported that comic fans all over the world were outraged, and had taken it upon themselves to collect rare pieces and autographs to give to Mike Meyer to boost his collection once more, what a sweet thing!

But it also reminded me of a theft that happened to myself at the beginning of the summer.

Now, i'm sure many of you have heard of Pokemon, an extremely popular game from Japan. They have cards, video games, cartoons, and collectables. From the time they came to the US, I have loved the Pokemon games from Nintendo. Your goal is to collect and train Pokemon, eventually hoping to collect them all. I have been playing my games for years, working hard to catch and trade pokemon, and attending events to get pokemon you can't find in the game. I play these games as relaxation when i'm having bad pain days, I've played them in the hospital and in bed after surgeries. I have put about 4-5 years and hundreds of hours of effort into these games.

This summer, they were all stolen from me.

The probable culprit? A well regarded nanny my parents had hired to watch my siblings. Though she came with great references, because I was home during the day, I could see how she treated my siblings. She called them brats, told them to shut up. She ate all of our food and then complained there was nothing to feed the kids, when we had two fridges and four freezers that were full. She gave my mom a list of food she wanted her to get for lunches, nothing but chicken nuggets, pizza, and juice boxes. She would take my siblings to the river and then sit on the other side of the path, reading a book, not even able to see the children. After telling my mom this, and she discovering things around the house that had been destroyed, the nanny was fired after less than a month.

Unfortunately, the theft of my games was not discovered for another few weeks. Why? Because after she'd stolen my games, some of which were gifts while I was in the hospital, by the way, she put my game case back in the exact position it had been it. As I had decided to take a break from my DS for a while, I didn't immediately notice.

So what all did she take?
6 games; Pokemon Pearl, Pokemon Platinum, Pokemon SoulSilver, Pokemon Black, Pokemon Ranger and Pokemon Ranger: Shadows of Almia
4-5 years of work
Hundreds of hours of my time
Event-only pokemon, that you can no longer get, including:
Celebi
Shiny Suicune
Shiny Raikou
Shiny Entei
Spiky Pichu
Pikachu Colored Pichu
Shaymin
Arceus
Deoxys
Mew
Phione
Manaphy
Darkrai
Victini
Zoura
Zoroark

And the rare items Oak's Letter, Liberty Pass, Member Card, Secret Key, and made me miss out on the Enigma Stone.

I went to the local GameStop to see if she'd sold them, but the told me they couldn't let me see the games without a police report, store policy. I would later learn this was a lie.

I was and still am devastated by this. As someone who has trouble doing many things, these were what I was good at. Several of those games were gifts, some I'd purchased myself, but they all had meaning, and I will probably never see them again. It hurts to already have a disability, and then have someone take advantage of you because of it.

Unfortunately, there are people willing to take advantage of the less fortunate among us all the time, so beware!

EDITED TO ADD: If you have any questions, feel free to email me at: jelsen@hotmail.com

The Chair

2011-09-09T23:05:00.001-05:00

Today the wheelchair guy came to my house to talk chairs, options, and so on. I decided a TiLite is going to be best for me, and after going over my conditions, so did wheelchair guy. We talked conditions, what I'd need to get my pre-auth, and chair options. He took measurements of me and our doorways.

Honestly, the thought of being in a wheelchair freaks me out, but I sort have come to terms with it.
We'll see.

Getting A Wheelchair

2011-08-20T16:29:00.002-05:00

Apparently I have hit that bump in the road known as, "Time to get a wheelchair".
I have no idea what i'm in for, so if you have any advice/suggestions/recommendations, let me know.

It scares the fudge outta me :/

Eff Being The Sick Girl

2011-07-12T16:00:00.002-05:00

That was my motto today.
I managed to get out of bed and actually do something productive.
Made two calls; one to sort out paying back grant money to school, the second to set up the lovely urology procedure I need because of an evil nurse who apparently hated her job. I could've had it fixed in-office, but I prefer anything that might raise the pain level to be done under sedation/anesthesia. And finally, to top things off, I biked for 3.6 miles.
Take that, EDS!

...and then I slipped and hurt myself trying to get into my (brother's) lofted bed. I should really ask my mom again why the able bodied kid gets to sleep closer to the floor. Then again, when you're 22 and living at home, it's not a choice they give you (I don't even have my own room, haven't since I was about 15-16. Meh.)

A Perfect Girls Night Out (or How We Were Pampered By A Band's Manager, Heard Good Music, And Met One Of The Guys From Twilight)

2011-07-07T22:50:00.000-05:00

2 1/2 weeks.

That's how long after Becca's transplant the concert was. I really wanted her to come with me to it, so I devised a scheme to get her there. I told her we'd stay in a hotel (reduce the strain/exhaustion), and sit side stage at the show (since she was still supposed to stay away from crowds), maybe meet the band after. I didn't have any of that put in place when I'd said it. She said if it could be set up that way, she'd love to go.

About a week before the show, and just a few days after she'd been discharged from the hospital, she began having seizures and was readmitted. By that point, I'd emailed the band's manager and gotten us the hotel room. I was disappointed, but more worried about Becca. I began making alternate plans to go with my mom. Then, just a couple days before the show, Becca's doctors gave her the okay to go, as long as I was with her at all times. She was discharged from the hospital.

The day came. I met Becca and her mom at the Mall of America. Becca's mom dropped her off, and we decided to do some shopping before going to our hotel. We bought some clothes, accessories, got hand treatments at Lush, and had sushi for lunch. We finally headed to our hotel, my lovely GPS lead us to the wrong street, and we ended up lost for a bit. When we finally got there (we stayed at the Westin Minneapolis), we were floored by how swanky the place was (we'd gotten a deal on the room through the band's tour discount).

We decided a nap was in order before the show, so we indulged in cozying up in the amazing bedding. When it was time, we got up, spiffed ourselves up, and got a cab to the Triple Rock for the 100 Monkeys/The Kissing Club show. The show was AMAZING and the Monkeys' manager, Lani, was super accommodating to us. She got us a spot side stage, with a chair for Becca to sit on. After the show there was a signing, where we got to meet the band, and after everyone else went through, we got a picture with them. This is that picture:

Us and the band. Oh, and that guy to my right, the one with his arm around me? That's Jackson Rathbone, or as most people know him, the guy who played Jasper Hale (blond vampire that didn't talk much) in the Twilight Saga. Yeah, I know. :)

So after all of that excitement, we took a cab back to our hotel and headed straight to bed. It was a wonderful experience, our first REAL outing, just 2 1/2 weeks after her transplant. It was great.

More posts on the horizon, I just need time to recover from some serious busyness lately!

The Outdoors Love to Find New and Inventive Ways to Hurt Me.

2011-06-24T20:17:00.000-05:00

Today I decided i'd had enough of laying in bed doing nothing, so I got up and prepped to go outside. I changed into more appropriate clothing and slathered on the sunscreen, then headed out the door with my net and bucket.

You see, even at 22, I still love to play in the muck. Two days ago I took my little brother tadpole hunting, and we'd started a little mini pond in a kiddie pool in our backyard. Today I wanted to go by myself so I would get to do it my way. We have at least four ponds and a river down the path by our house, so I headed out. I left my shoes home, as I didn't want to get them wet. This is where I screwed up. You see, it was 73 and sunny today, and the blacktop was extremely hot. I walked down to the river, caught soom minnows, then stopped at a couple of spots by the closest pond to catch tadpoles before heading home. I'd noticed my feet kind of hurt on my way TO the river, and by the time I was headed back home, I knew how big of a mistake i'd made.

I am now the proud owner of 2nd degree burns on both feet. I have 3 blisters that are larger than a half-dollar, and 5 more that are dime sized or less. I can't really walk and I'm attempting to use blister bandaids to cushion them. Did I mention that Becca and I will be attending a concert on July 1st? I hope these heal fast!

Life Is Looking Up :)

2011-06-18T10:52:00.000-05:00

It really is.

Oscar is almost 100% back to normal, acting like a total spaz.

I visited Becca on Thursday, she looks amazing, but don't take my word for it, here's a picture!

Oh, and I went from being unemployed to having 2 jobs, woo!

Miracles do happen. Organ donors are true angels.

2011-06-14T23:58:00.001-05:00

The liver was a match.

Becca went in to surgery around 7pm CDT, and should be out of surgery and transferred to the ICU within the next hour or so.

She still needs all the prayers and healing thoughts she can get, as she's not out of the woods yet, but we're all extremely hopeful!

UPDATE 8:33am CDT 06/15/11: She is awake and feeling good this morning! :)

The Call.

2011-06-14T09:24:00.000-05:00

Just got a text from Becca.
She got "the call".
Mayo Clinic may have found her a matching liver.
I am beyond excited, and so hopeful that it is truly a match.
Please send thoughts, prayers, and all the positive vibes you can her way, she'll be needing them.

Dealing with my SECOND animal crisis this year, or, how owning a Dachshund is EXPENSIVE.

2011-06-14T01:33:00.000-05:00

I swear, I'm cursed as far as animals go.

Last Thursday, I took my mini doxie, Oscar, to the vet. I'd found green discarge on his penis, he yelped when touched near his back end, and I worried he had a sheath infection. So off to the vet, who examines him, tries to get a urine sample (no dice) and then informs me that he's got some weakness in his back end. Okay, that was not what I was expecting. She put him on metacam and told me to call back on Monday to talk about how he's doing. Okay.

Cue Friday night. I go out to bring Oscar in (he loves the outdoors, and so he plays in the back yard during the day) and can't find him. I eventually do, hiding in the garage. I try to get him out of his hiding spot, and he starts screaming and biting me. I lost it and started sobbing, partially out of shock, pain, and knowing something is horribly wrong. I bring him inside and set him down. He attempts to go lay down, but his back legs are not cooperating. My mind reels, and I know that this is the start of a bad thing.

I calm myself enough to call the vet's office. It's 7:30pm on a Friday night, but the vet has his personal cell phone number left on the voicemail for emergencies. I call and explain what happened. He reassures me that Oscar will be fine until Monday, continue with his meds, and then tells me to take care of my wounds (Oscar broke the skin in several places when he bit me) fine.

Today comes, and I call the vet's office. I tell them Oscar has deteriorated significantly since Thursday. I ask for the soonest appointment, and it's set for 1pm. The time comes, and I load Oscar into the car, still in his bed. We get there and Dr. Rich examines him. I know what's coming, every Dachshund owner's worst nightmare, the prospect of Intervertebral Disc Disease. I voice my fears to Dr. Rich, and he agrees xrays are in order to see where the problem is.

On a bit of a side note, Dr. Rich knows I want to be a vet, and that I'm currently trying for my Animal Science degree. Because of this, he always keeps me 100% in the loop, and consults with me on care and such. He treats me like not only a customer and pet parent, but also a colleague. I see all test results, and we discuss them together. So when Oscar's xrays came back, we took a look, and though being closer to the brightness of the backlight and having a harder time seeing it originally, the problem was plain as day from my vantage point. A narrowing of the space between the L1 and L2 vertebrae. Classic IVDD.

My world collapsed a little. I knew what this meant. Oscar would need aggressive treatment if he was to regain the function he'd lost. Surgery is the best option, but unfortunately, I don't have $3000 to do that. That left only one option, steroids. We discussed outcomes and quality of life, agreeing that if he was in pain constantly, euthanasia would be the best option, but obviously we'd try what we could first. Dr. Rich said at one point that he'd like to try doing a lamenectomy sometime at their clinic. Obviously he's not a specialist, but he'd assisted on a few in vet school.

So it was that Oscar is now on steroids, in hopes he'll rally and all we'll have to do is modify what he can and cannot do, and he'll live a long, happy doxie life. Second best outcome is he'll only need a cart, and will live paralyzed but pain free. Worst outcome is he'll get worse and be in immense pain, at which point the decision will be to put him to sleep so he doesn't suffer. My mom and I talked about it, and if it comes to that point, we will offer Oscar to Dr. Rich to attempt a lamenectomy on, depending on how much it would cost. Obviously he's no expert, and hasn't ever done one himself, hasn't assisted on one in years, but if there's no other option, we'd at least give him a chance.

For now Oscar is confined to the laundry room, carried outside to go potty, and his activity is kept to a minimum. He's on prednisolone and tramadol, so every eight hours I shove a tramadol down his throat, and twice a day I do the same with the steroids. It's a pain in the ass, but I love him and would therefore do anything for him. All people entering the house are told to, under no circumstances, touch or otherwise engage the dog. Thankfully my mom and step-dad have been helping with potty breaks so that I get a break. All in all, I'm terrified, I can't lose my best buddy, I've already lost one animal that meant a ton to me this year, I don't want to lose another.

And that's been my life recently.
Prayers and healing thoughts would be much appreciated.
I hope things are going better for the rest of you.

An Update, and A Call For Prayers

2011-05-18T12:29:00.000-05:00

First, let's talk about me. It's been almost two weeks since I posted about the Cymbalta incident, and I am still feeling the effects of that. Thankfully they are almost non-existent, but every once in a while, I notice.

I went through a very rough period after the Cymbalta incident. It seemed as if all of my medications had stopped working, and the pain was impossible to ignore, and I was not able to cope. I saw my PCP about it, and he went through his ideas for treatment with me. Most of them were medications I had previously tried that had no effect. Then he suggested raising my prednisone dose, which I told him the Mayo Rheumatologist did NOT want happening, so that was out. Finally he suggested that maybe my issues were from lack of sleep, as I hadn't slept well in months. He prescribed Valium to try and help me sleep (I can't do most actual sleep meds) and hoped that would help, otherwise we'd be back at square one.

The first couple of nights didn't work, I was taking the Valium, plus Unisom and Melatonin to try to get sleep. No dice. The third night I discont'd the Melatonin, and switched from Unisom SleepGels (diphenhydramine) to Unisom SleepTabs (doxylamine). That night I slept like a rock, had multiple dreams, and woke up the next day in complete awe of what a good night sleep could do. I hadn't felt that good in YEARS. I had energy, felt like doing things, and though I had some minor aches, they weren't even bad enough to warrant an ibuprofen. I have been feeling pretty good since, and I really hope it continues.

Now for the prayer request.
I've written about my friend Becca a few times, I met her last summer in pain rehab at the Mayo Clinic. She was diagnosed at 4 with Primary Sclerosing Colangitis. She's had two liver transplants, but is currently in need of a third. I went to visit her at the beginning of April. The first day and a half of my visit she was doing okay, and we enjoyed a wonderful warm day out. On my third day, her nausea was so overwhelming that I took her to the hospital. She was admitted, and has basically been in ever since. She was released for a day or so, only to transfer from one hospital to another that has a liver transplant clinic. She is not doing very well. Her nausea is such that she can barely eat, and they are considering putting in a feeding tube. Her quality of life right now is not so great, and I worry about her quite a bit. She is only 23 years old, and one of the most genuinely kind, caring people I have ever met. Even as sick as she is, she makes origami for other patients, and talks with them. So if you could spare a prayer, a thought, or even just some healing vibes and send them her way, that would be great.

Hope you are all well.
-Jess

Missing Meds: The effects doctors don't warn you about.

2011-05-05T12:59:00.001-05:00

Cymbalta.
According to Wikipedia, "Duloxetine (sold under the brand names Cymbalta, Ariclaim, Xeristar, Yentreve) is a serotonin-norepinephrine reuptake inhibitor manufactured and marketed by Eli Lilly. It is effective for major depressive disorder and has been shown to be as effective as venlafaxine for generalized anxiety disorder (GAD). Duloxetine alleviates pain associated with diabetic neuropathy and fibromyalgia."

True. Doctors have been pushing Cymbalta on people since it came on the market. I personally ended up on Cymbalta after the councilor I was seeing for some various family and depression issues, suggested I speak with my psychiatrist about changing medications, as he believed my Sertraline (brand name Zoloft) had become ineffective.

So I saw my psychiatrist. She agreed a med switch may make things a little easier, and suggested I go on Cymbalta. I agreed, as I had no reason to doubt her judgement. At that time she also told me she'd like to see me back in three months, but she would be switching clinics. I agreed to follow her to the new clinic.

Fast forward to Friday, April 29th. I was on my last pill of a 3 month supply. I had forgotten to make the appointment with my psychiatrist, and there were no refills on my medication. Drat. Since I'd never previously had any problem skipping a few days of meds, I decided to wait until Monday to call. Friday was also the day I went to the horse expo with my roommate, we walked three miles, and I horribly overdid things. That night I started feeling sick.

By Saturday, my sleep patterns were a bit messed up, and I was having some light dizziness and nausea. I attributed all of that to my time spent at expo. Sunday the dizziness and nausea were worse, and I could not sleep for the life of me. Every muscle felt tense and my brain felt hyperaware of the dizziness. By Monday night, I'd had enough. At 10:30pm my roommate and I took off for the emergency room. At this time I was still attributing things to my overdoing it at expo. They gave me zofran for the nausea, it did nothing. Tramadol for the pain, more nothing. They finally gave me a shot of domperidone, and that took care of the nausea. At this point, I was exhausted, but also felt like every nerve and muscle in my body was on full alert and wide awake. By the time we got home at 2am, I still couldn't sleep.

Tuesday I woke up and felt fine for the first 30 minutes of being awake, and then it all hit me at once. Dizziness, nausea, blurred vision, brain fog, hyperaware nerves, insomnia, tremors, confusion, "zaps", profuse sweating, feeling flushed, vertigo, irritability, aggression, anxiety, headache, lethargy, nightmares, extreme muscle tension. You name the symptom. I had it. I felt like I was dying. It was while looking through my pill bottles for something, ANYTHING that might work, that I came across my empty Cymbalta bottle. It was then that I put two and two together. I googled Cymbalta withdrawal. The things I read were horrific, and yet so familiar. I was never warned about any of it.

My problems did not stop there, however. I could not get my medication refilled until Wednesday, since they would have to call in to the clinic I went to. Wednesday my symptoms had increased yet again, and I was in a constant haze. My mom called me at 7:30pm saying they had my meds, and I drove the forty-five minutes home to get them. I took one at 8pm. I returned to my apartment by 9:30 and decided to have dinner. BAD IDEA. The nausea, which had been just barely tolerable, became impossible to ignore. By 11:30pm I felt so awful that I called my mother in tears, pleading for her to make it stop. After that call, I went back to my bed, across from my soundly sleeping roommate, and spent the next hour trying not to vomit.

Thankfully, at 12:30am, the medication seemed to have entered my system, and the nausea backed off enough for me to fall into a fitful sleep. I woke up at 6am and took all my medications, including a zofran. Now that the day is wearing on, and I have had 60mg of Cymbalta in my system, I am feeling much more human. Still slightly dizzy, a tiny bit nauseous, and I have a headache, but I will take that over everything I had yesterday.

So take this story as a warning, and ask your doctor if any new medications he or she prescribes to you have side effects and or cessation effects. I wish I had know, maybe I wouldn't have had to suffer.

In the hospital, but this time it's not for me.

2011-04-07T12:20:00.000-05:00

On Monday I made the 7 hour drive to visit my friend B from PRC in Nebraska. I love coming out here because I get to spend time with B and it's really amazing having a friend that fully understands your limitations.

Monday was generally just relaxing, seeing as it was 6pm when I got there, and I drove almost non-stop. Tuesday was a beautiful day, 73 degrees and sunny with a breeze. We went to Misty's for lunch, Mondays and Tuesdays are half off any of their prime rib dishes, so I got an 8oz. slab of pure heaven. Afterwards we browsed through the haymarket area, got some ice cream, sat in the sun. It was a wonderful day. Wednesday is where the problems began. I woke up realizing we'd overdone things the day before. Becca was much worse than I was, extremely nauseated. By evening, it was apparent that the only thing that would fix it was a hospital admission for anti-nausea meds and fluids.

So that's where we are today. She was only supposed to be in overnight, but obviously things didn't go as planned. Please keep her in your thoughts, she could use 'em.

And if you find yourself in Nebraska, they are holding a fundraiser for B and her family on April 16th, info can be found here. Please pass this on to all your friends, they could use the money.

Goodbye, you obnoxious little brat.

2011-03-24T22:16:00.001-05:00

Today I lost a dear, dear friend.

I received a call at 8:50am today. That time is burned into my mind. My friend Lori, whose house my horse is boarded at, was on the phone. She said that this morning, as they went to check on a horse of theirs, Diamond, who was in the process of dying, they'd found my horse pawing violently at the ground. She was colicking.

I told Lori I was going to finish up with chores at the place I was watching, as I was taking care of 4 horses, 2 dogs, and 8 or so cats, and then I would be out. Immediately after I got up, some unseen force urged me to skip chores and go, so I did.

I was not prepared for the sight that awaited me. As I got out of my car and walked into the yard, I noticed several things. First, my friend Lori, her daughter Ginger, who is also my friend, the vet, and the vet's assistant had all been crying. Second, I saw my sweet girl; She was trembling violently from head to hoof, breathing heavily, sweaty and caked with mud. There was a tube in her nose that went down into her stomach, which occasionally spewed gastric contents onto the ground. The vet's assistant was pressing a towel to my girl's nose, as it was bleeding.

After a talk with the vet, spending some time walking my girl around the yard, and talking with my parents, we decided the best thing was euthanasia. As the vet and her assistant prepared everything, Cocoa made her decision. She lay down on the ground, onto her side. Her breathing became ragged and her eyes closed. She was done fighting. The vet slid a catheter into her neck, and moments later, injected the solution that ended her suffering. They checked for a heartbeat once, twice. My dear friend was gone.

The vet's assistant pulled her forelock into a ponytail, and with a few snips of her shears, it was off, my last memento of a fallen friend. But it was only to get worse. The vet then moved on to getting Diamond ready for her her journey over the bridge. Diamond was sedated and brought into the yard, away from Cocoa to keep her from panicking. As my friends said their goodbyes, the vet helped Diamond on as well. And so it was that in the span of an hour, two sweet friends were gone, and three hearts were left broken.

And so may my obnoxious, bratty, naughty little pony rest in peace, her time with me too short.

Let's have a lighthearted post :)

2011-03-12T17:36:00.000-06:00

These are the guinea pigs my roommate and I share, playing around in the bath. Feel free to repost at will :)

I Survived.

2011-02-12T17:31:00.000-06:00

Surgery was complication free, and I was discharged soon after.

That's right, I didn't have to stay overnight, no crazy crud to deal with. My nose is drippy and gross, and my throat hurts like nobody's business, but I'm alive.

Thanks for all of the well wishes, they definitely helped :)

Another Surgery Is On The Horizon

2011-01-31T16:39:00.000-06:00

I will be having surgery next Friday, February 11th, to reduce the size of some fleshy bits in my nose that are causing chronic sinusitis and sinus headaches, and also to remove the tonsillar re-growth and my lingual tonsil tissue.

This is a surgery that is outpatient, but obviously there is the possibility of complications in my case, and those frequently happen. I'm just glad I can get this done and over with quickly.

I could use some well wishes, healing thoughts, and good vibes my way, if you can :)

TMI WARNING! My First Waxing Experience

2011-01-29T14:46:00.000-06:00

Today I had an appointment to have my hair cut. I drove myself, and my family had appointments soon after. While I was getting my hair cut, my mother and siblings arrived. When I was finished, my mom asked me if I wanted my eyebrows waxed. I've never had waxing done before, but I decided to go for it, however, I wanted to try something a little more adventurous. I asked for the prices of a bikini wax and a brazilian, while my mom looked at me like I had three heads. Mom agreed to let me get a brazilian, but only if I got my eyebrows waxed, too.

My aesthetician was a lovely woman, very kind. She set me up for an eyebrow wax first. It really wasn't painful at all, just a bit uncomfortable. It took very little time, and then they were done. While she set up for the brazilian, I took the opportunity to pee, seeing as I wasn't going to be able to for at least a half hour, and I had downed a complimentary Coke during my haircut. The brazilian itself was not nearly as bad as I thought it would be. I'd seen videos on YouTube of women screaming during their first brazilian. I didn't scream, but of course that doesn't mean it didn't hurt. The middle patch is the worst, and my eyes started watering a bit with that one. It helps to do deep breathing, and to relax instead of tensing up when the strips are removed.

I lost track of time, and before I knew it, she was done, and I was given the go-ahead to clean up and get dressed. It was a very professional experience, and at no point was I uncomfortable with continuing. If it wasn't so expensive, I'd consider going back.

To think, my day isn't even over yet... xD

Costochondritis...Hurts Like Hell

2011-01-29T11:44:00.000-06:00

That was today's diagnosis.

For the past week, it's felt like someone was trying to rip out my sternum. This morning, I went to reach for a med bottle and was basically rendered breathless by a sharp ouchie feeling in my chest. I said enough is enough, and made an appointment at the clinic (the sister clinic of my PCP's office in a neighboring city, and the only one that has weekend hours) and went in. Oddly enough, after I was checked in, someone said hello and my name. It turns out one of the nurses from my PCP's office was having her daughter seen for a sinus infection. Small world.

So I finally see the doc, and he actually knows about EDS and understands. He examined me, even brought in a nurse when he had to check my sternum! I was impressed. He told me what was up, and wrote everything down for me. I basically have to breathe deep, take pain meds so I can, and rest with heat or ice on my chest. I can do that. It's nice to have a solid answer.

And that's my day so far.

One Sick Puppy

2011-01-28T16:18:00.000-06:00

I was going to make a post about my trip to the ENT on Monday, but unfortunately I've been dealing with a very sick dog all week, so I'll write about myself and the dog all at once.

Monday morning I had an appointment with the ENT about a fleshy lump in the back of my throat that was worrying me. However, the night before, my dog, Oscar, started acting out of character. He is a mini dachshund, and he was very quiet and still, which is not normal for that breed, really. He also screamed whenever I picked him up. Come morning, I drove him down to my vet and dropped him off, then headed to my appointment.

The ENT said the fleshy lump was most likely a re-growth of my tonsil tissue (I had my tonsils out years ago) and that it could be removed. After he finished examining me, he asked if I had any sinus issues. I've had sinus problems for a really long time, and so I told him yes. He asked if I suffered from sinus headaches, and again, I do. Then he asked me if it was worse on one side or the other, and I told him the left side bothered me a lot. Well, it turns out I have a deviated septum (common in EDS patients) that is pressing on one of my nasal turbinates and causing inflammation and other issues. He suggested I get a sinus CT and possibly surgery if it's fixable.

I am excited, not for another surgery, but for the fact that, maybe, I'll have fewer sinus headaches and infections! He said he could remove the tonsillar re-growth and possibly remove a couple of my lingual tonsils at the same time. I meet with him again on Monday to review my CT (I had it the same day) and talk options.

As for Oscar, he was exhibiting very bad symptoms for a dog. Extremely bloated and taut abdomen, hyper-salivation, pain, and lethargy. First the vet checked for GDV (aka bloat, and fatal if not remedied quickly) and that was negative. Then he had a barium series to check for an obstruction, which was also negative. So the vet basically said it was some mysterious gastrointestinal upset that he had no clue what it was, and prescribed Omeprazole and Mirtazapine, plus special easily digestible food.

Because Oscar has been sick and my family is refusing to do special feeding and give him medication, I've been staying at my family's house since last Friday, when I came home for the weekend and my Monday appointment. I'm really hoping he starts getting better soon, because I'd like to go back to my apartment.

Hope you all are having a better week!

P.S. My insurance dropped me, so I've been living without my Lyrica, which is not cool. They're supposed to re-add me since the law changed, but it's going to take a few weeks :(

A Request For Prayers And Healing Thoughts For A Friend

2011-01-22T15:15:00.000-06:00

Last night, my friend that I visited just a couple weeks ago posted that she was having a difficult night. She said she just felt "wrong" and was weak, tired, barely able to move, having trouble breathing, and in pain. She said there was nothing going on that her doctors could do anything about.

Now, since pain rehab, and especially since I visited, I have felt extremely lucky to have her as a friend. I consider her and her mom part of my family, and they treated me as part of theirs. She is an inspiration, and even as ill as she is, she always tries to encourage others to keep going. So please, keep her in your thoughts and prayers, because it would be devastating for the world to lose such a wonderful young woman.

The Good, the Bad, and the Ugly, First Week of 2011 Edition

2011-01-10T14:22:00.000-06:00

The Good:
I left for Nebraska on New Year's Day, drove ALMOST 7 straight hours, with an hour nap at a rest stop in between. I made it safely, and was so happy to see my friend. I was only supposed to stay for two days, but I ended up staying for five. We went to various places, and she introduced me to new food, like Phở, a Vietnamese noodle soup. I even helped her treat an abscess in one of her rats. All in all, it was a great time, and I made the 7 hour trip home in one go, and got back safely.

The Bad:
When I got home, my legs were super stiff, and I was exhausted from all of the driving. I also discovered I had an abscess of my own (unrelated to me treating her rat). I also received a call today from my apartment's management company, saying I hadn't paid rent (totally forgot) and then they threatened eviction. I paid the bill online almost immediately. This was absolutely nothing, though, compared to...

The Ugly:
My first day back, I got a letter from my school. I knew it was coming, but it still hurt like nothing else. I received a one year academic suspension, effective immediately. This is because, for more than one semester, my GPA has been below 2.0. Now, I do realize that part of this is my fault, but some of it can be attributed to my health and also to some shady stuff in one of my classes, and a worthless instructor in the other. The letter stated that I could file a petition for reinstatement, but with my record, it's probably about a 10% chance they'll reinstate me. I am devastated, I have been giving it my all this year. I finished filling out the petition today, and will have to drive up and turn in it by the 12th.

All that said, I am looking forward to try #3 at having a 22nd birthday party for myself, which is going to be this Saturday. I'm hoping for good weather, and NOT another blizzard!

Hope you are all well, Happy New Year, and I wish you guys the best!

Rehab Friend Reunion!

2010-12-31T14:56:00.000-06:00

Tomorrow I start the new year by driving down to Nebraska to visit a friend from pain rehab. The trip is gonna take 7+ hours, which I am really not looking forward to. At least I get to use my mom's awesome car.

Wish me luck!

It's Christmas Eve...And A String of Bad Luck

2010-12-24T15:36:00.000-06:00

It's Christmas Eve, and is the general deal for holidays with my family, the bad luck has begun.

It started with the stranding of my little brother's most wanted gift. He loves legos, and my mom had ordered him a Lego Harry Potter set, #4840, The Burrow (The Weasley's Home). That gift has been in Newark, NJ for three days, even though my mom had 2 day shipping. My little brother is devastated.

My bad luck started this afternoon. I was walking back to my parents' bedroom to check on my brother and sister, who are watching a Star Wars marathon, and I stepped wrong, dislocating my big toe. Normally this wouldn't be a huge deal, but the pain was so much more intense than usual. I currently have a lidocaine patch wrapped around it, covered in gauze and taped on, and an ice pack over top.

Then, as I was making lunch, I dropped a plate, that shattered all over the floor. As I was cleaning the mess up, I got glass slivers in my feet.

I hope Christmas is better!

Birthday Party Called on Account of... Blizzard?!

2010-12-16T09:51:00.000-06:00

Last week I turned the big 22. Normally I wouldn't make much of a fuss about it, but being as I'm living in an apartment with my awesome friend/roommate (totally a no-no, but so far we're coexisting very well) I decided that I could throw myself a party. So I hop on the Facebook, and set up an event. Put in all the details, invite everyone I want. People start responding, lots of maybes, a couple for sure. Then comes the day....

And the biggest friggin' blizzard in almost 20 years hits!

Just my luck.

The storm was so bad that MNDOT pulled all the plows OFF the roads!

And so the party was cancelled. This was in the top 5 of my list of crappy birthdays, and the second official time my birthday has been snowed out. Normally I don't whine about presents, I always get a few, it's not so huge of a deal to me, but I only got two this year. One from my roommate, and another from a friend of ours. Sad, indeed. Either way, makes for an interesting story. Hope everyone is well!

Sick again, oh joy!

2010-10-30T12:54:00.000-05:00

Wednesday my roommate, myself, and a friend of ours went to the Mall of America. We had a pretty good time, then went to Old Country Buffet for dinner. I went to bed content.

Thursday morning I wake up early to work on a project, and upon waking, I realize I have a sore throat and no voice. Emailed my professor that I couldn't do my speech, then went back to bed. I slept on and off for a good 36 hours.

Friday I missed class, slept more. That night I was feeling super crappy, so I went to my parents' house for the weekend. I was running a fever, totally out of it, with a laundry list of symptoms.

This morning I went to the doc. Verdict? Sinus infection. Since I've only been sick two days, he said it was probably viral, then gave me a list of over the counter crap to take. So far I haven't slept in almost 24 hours due to the fever hot/cold issue, plus my arthritis acting up on top of it all. I'm hoping this goes away soon :/ I'm already super behind on schoolwork, I don't need to get any further behind!

Also, in my previous post I linked to some wishlists. Don't worry, I'm not soliciting anything from anyone, I just thought it'd be fun to put them up, thinking maybe a friend would surprise me with something. Sorry if I offended anyone!

Record breaking low pressure system in the Midwest...Help!

2010-10-26T19:20:00.001-05:00

I feel like I'm being ripped apart.
Since last night, the weather has been getting progressively worse. The temperature has dropped from near 70°F over the weekend, to 39°F this afternoon. It's raining with the occasional ice crystals. The wind is insane, and we are under a high wind warning until 7pm tomorrow. The lowest pressure point in this system is currently over Minnesota...Where I happen to reside. Crap.

I guess it's time to cuddle up under a pile of blankets and avoid the outdoors.

Oh, and if anyone is interested in enhancing my warm, comfort time, feel free to check out:

My ThinkGeek.com MN weather wishlist

And in case I don't post again before it, Happy Halloween :)

An update on life, and how you can find friends in odd places - like pain rehab

2010-08-12T22:18:00.000-05:00

Pain Rehab kicked my butt. It chewed me up, spit me out, and had me not quite sure which way was up...But I survived, and gained some things. Obviously I gained knowledge of how to deal with the pain. I gained strength from PT. The best part, however, was the fact that I gained a friend. She's 23, and basically me...With a few differences. It was so great just to have someone my age to talk to, who wholly understands the pain issues, and is also living with the same, and wanting some of the same things, mainly some semblance of normality. She doesn't live near here, but the wonders of the internet let me keep in contact with her, and for this I am grateful.

My first activity post-rehab was the Warped Tour. For those of you unfamiliar with this event, it's a summer concert tour, of mostly rock, pop-rock, screamo, electronica, punk, and ska music. It's outdoors, and has upwards of 50 bands playing on about 6 different stages. I've been going every year since 2004. A friend of mine, who also went, told me she was glad that I came, because July was a very difficult month for me, and I needed something fun. Oh, and it was fun! Despite the 90+ degree weather, I met up with and hung out with friends, saw my little cousin enjoying her very first Warped Tour, and saw/heard some amazing bands. It really did start August on a high note.

August 3 I had surgery to remove the plate in my left leg. My surgeon, whom we'd begun to dislike following my first surgery after he took over for my previous surgeon, proved that his ego is more developed than his bedside manner. After beginning to backtrack on plans we'd made months prior about this surgery while I was in pre-surg, I knew this was going to suck. Post-op in the PACU, they could not get the pain under control. They started with Dilaudid, 5mg doses, every 5 minutes, with a max of 500mg. They maxed me out, and I was still extremely uncomfortable. So, again, 5mg, every 5 minutes, with a max of 500mg. When they finally got the pain under control, I had received a FULL GRAM of Dilaudid. Keep in mind that I am a 144 pound female with no history of drug use/abuse. My surgeon then didn't decide for several hours whether or not to admit me (it was supposed to be a same-day surgery, but it never is for me, because I have complications). When I finally was admitted, it was 6:30pm, and the hospital kitchen was CLOSED. I couldn't get anything more than a turkey sandwich, and when you haven't eaten since 12am, a sandwich isn't gonna cut it. Thankfully, me being a resourceful college student, who attended school in the area last year, I knew of a good order online Chinese/Cambodian place, and we got food from there. The rest of my stay in the hospital included talking with many of the nurses who remembered me from my previous surgeries, and getting increasingly angry with my surgeon. He doesn't know it, but at my 6week follow-up appointment. He's getting fired. If I ever have to see a doc at that hospital again, it will not be him.

Anyways, I'm still healing, and my body likes to shoot my temp up to 99° and sap my energy, so it's off to bed with me. Hope you're all well!

Mayo Clinic Pain Rehab Center 3 week program, Unofficial Day 3, Official First Day

2010-07-13T00:38:00.000-05:00

Thursday
Day 1: Evaluation
Friday
Day 2: More eval, then testing the waters by going to group.
-Weekend spent at home-
Monday
Day 3 (Official Day 1): Day starts with team meeting. We set our goals for the day. After only 2 1/2 hours of sleep the night before, my goal for the day was to stay awake. Follow meeting by morning stretching. OT afterwards. At 10am I had my Biofeedback appointment, it went well. 11am was group again, the topic was okay. Lunch was at 12, had a pretty good time just sitting around talking with everyone. After lunch was group 2. After group 2 was group therapy. Last event of the day was hearing from some program graduates.

Honestly, so far, my favorite part of this program is being completely understood. Not having to explain everything. Being in a room full of people who know what I'm going through.

Still recovering from my crash, not 100%, but getting there.
Thank you all for your well wishes and support!

Being hit at 35+ mph is a terrifying and painful experience.

2010-07-04T13:05:00.000-05:00

It was Thursday, July 1st. I was on my way to my orthodontist to pick up my retainers. I was literally blocks away. I was making a left turn, the light was green. I checked and rechecked for oncoming traffic - Nothing. I started to turn, and out of nowhere, I was hit. The main and side curtain airbags deployed. It took a second for the pain to hit. The car was full of smoke, the horn was blaring. The minute my airbags deployed, my car began contacting OnStar (thank you, GM). The crash had happened directly in front of a police cruiser. He turned on his lights and called for backup. The OnStar call went through. Was I okay? No. Did I need an ambulance? Yes. At that time, the officer opened my door. Was I okay? No. Did I know what happened? Sort of. I asked if I could call my mom. Did I have a phone? Yes. Could I reach it? Yes. I called my mother, hysterical. I told her I was in a crash. She asked if I was okay. I said no. Then I had to hang up. OnStar woman said she would contact police and rescue. Officer told her they were already there. He asked for my ID if I could get it. I shakily removed my wallet from my pocket and handed it to him. I told him about my EDS. He told me to stay calm, but people would be coming and asking the same questions. Told me not to move my head.

The next few minutes are hazy. Fire rescue inspected my car for fire, shut off the horn. Began scattering cat litter to absorb the fluids draining from my engine. A fireman came and asked the same questions as the police officer. Officer came back and asked where my insurance info was. Glove box. He said he'd get it. Then the medics arrived. Asked me my name. Suddenly someone was behind me, and they put a C-collar around my neck. They asked me what hurt. Neck, head, back, shoulder, chest, arm. I had been reflexively cradling my arm since just after the impact. Was I trapped? No. Did I think I could walk? Maybe. The police officer and a medic helped me out of the car. I made the dazed walk to the ambulance.

More questions, from medics and the officer. I was sobbing, pain, fear, terror, they all contributed. I was laid on a backboard. Buckled in. The ambulance moved to a parking lot to let traffic flow again. They started an IV. More questions. Poking and prodding. Does this hurt? Yes. An ice pack was put on my arm. Morphine was given. I made sure they had gotten my glasses and iPod from my car. I carefully removed my EDS info card and handed it to her. Informed her that I metabolize morphine very quickly. She game me more as it wore off. Made sure I was comfortable. Pulse ox, BP cuff. What hospital was I to be transported to? I gave her the name of the one connected to my orthopedist's hospital. We were en route.

Time passed, hazy for me. Dizzy, confused, in pain. We arrived. I was brought in to the ER, transferred over to a bed. More questions. My family had arrived before me, and they were brought in. I was relieved. More medications, Dilauded, Valium, things I can't remember. Blankets, a new ice pack. Then they threatened to cut off my clothing. Regardless of my current state, I refused. I loved the shirt I was wearing. The nurse agreed to attempt to remove it sans scissors. It worked. X-rays. Nothing broken. C-collar and backboard removed. Finally allowed a glass of water. Percocet given. A second gown to cover my back, and a trip to the bathroom before leaving. The morphine had caused urinary retention (I've dealt with this many times before) so I asked to be cathed before leaving. That done, I was finally free to go, prescriptions for percocet and valium in hand, right arm in a sling.

Final diagnoses? Whiplash, concussion, severe bone bruising over collarbone and sternum. Bruises on chest, hips, legs. muscle strain/injury in shoulders, right being more severe. wrist sprain. And what I considered one of the worst injuries? a 4" second degree burn from the deploying airbag on my right arm.

It's been 3 days, I am still in considerable pain and can't do much at all. I get to endure daily bandage changes on my burned arm. I can't sleep at night due to my chest bruises/pain. I get dizzy and nauseated if I am up for too long/move too much due to my concussion. My muscles are extremely tense, and I have to wear a sling and wrist brace if I am going to be doing anything where I can't keep my arm and shoulder relaxed and supported.

As for my car? She was a 2010 Pontiac Vibe, gorgeous black with a sunroof and amazing sound system. She is now a partially twisted pile of metal in a towing yard. We think she may be totaled, but that is for the insurance adjuster to decide.

I am also terrified to drive now, and have been very panicky as a passenger in cars. I know it could've been worse, and I should be thankful, but it still kills me inside.

When Mayo doesn't refer to a sandwich topping, or, how I'm moving to another city for a month.

2010-06-30T11:59:00.000-05:00

After countless exams, poking, prodding, new diagnoses, and doctors, I finally got the referral I was looking for. After going in for an eval and countless phone calls, I was in, and the date was set. What does this all mean?

Next month, I will be moving down to Rochester (MN) to spend three weeks in the Mayo Clinic's outpatient pain rehab. This program can be really difficult to get in to, but thanks to our close proximity (we're only an hour or so from Rochester) I was able to be put on the short notice list, which meant if they had a cancellation, I could be down there immediately.

I'm kind of scared, as I really don't know what to expect, and this is a very intense program that starts at 7:30am and goes until evening. As a kid, my family lived in Rochester for a few years, and I can tell you now, it's not the most fun place to live. I will be living in a long term hotel room, by myself, with no family or friends in the area. I'll miss my little brother's 7th birthday, and several events I wanted to attend, but hopefully in the end it will all be worth it.

The desert does a body good.

2010-06-02T14:23:00.000-05:00

I've been here since last Friday. The difference from home is unbelievable. My pain level has dropped significantly. I have been far more active than usual, and it's nice. However, I miss my family, and my pets, and I really can't wait to get home. I fly back on Friday but will be staying in a hotel overnight because I get back rather late, and it'll be a 5 hour drive home.

Hope everyone had a great Memorial Day weekend!

Viva Las Vegas!

2010-05-27T10:00:00.000-05:00

Well, not exactly Vegas, but somewhere nearby.
I haven't posted until now because I didn't want to jinx it, but I leave tomorrow for the great state of Nevada.
One full week of desert weather!
Enjoy your Memorial Day, folks!

Results, storms, and the possibility of warmth.

2010-05-14T11:23:00.000-05:00

So I went to the doc on Tuesday. The test results were as follows:
-Cholesterol is still high (307 total, Triglycerides 209, LDL 166, HDL 99)
-Vitamin D is still low despite 400IU/day supplementation. Upped to 800IU/day.
-Blood inflammation levels above normal but not high enough to be worrisome.
-Holter was inconclusive.
-MRI results aren't back yet (MRI was Wednesday)

So that was my Tuesday/Wednesday. Then on Wednesday night we had our first Thunderstorm of the season, and I was in a world of pain. I haven't slept more than 5 hours out of the last 36. As for the possibility of warmth, I may be going to Nevada to visit some family friends for a week or so. I love NV because it can be 105 degrees and be perfectly comfortable, because unlike the weather here, the heat there is dry. Last time I was in Nevada I felt amazing and had energy to spare. Hoping I get to go!

It's almost like a medical miracle.

2010-05-06T01:48:00.000-05:00

Today I took my first dose of Lyrica.
Within two hours, I started to feel...Different.
I haven't been this mobile and at this (very low) level of pain since I was about 8!

I actually started tearing up at one point, because for the first time since I remember, I felt normal.
My hope now is that this medication continues to help me, because so far, the change in my pain and attitude towards my life has been drastic.

To those of you who have yet to find a treatment that helps, keep your head up, you never know what's around that next corner.

Doctors: Throwing every test they have at me, and seeing what sticks.

2010-05-04T19:44:00.001-05:00

My day was, to say the least, eventful. Even though it was a normal visit to my primary care doc, some of the things that have been going on with me recently concerned him enough to bring in the big guns.

He agreed with the diagnosis the Mayo Clinic doctor made of Fibromyalgia. This was a diagnosis that sort of sneaked up on me. I knew it was probable, but I really didn't want to hear it confirmed. However, that's what happened. Thankfully, because of this, he agreed to switch my pain meds from Gabapentin to Lyrica, which I am excited to try.

We addressed my current new symptoms, and they could possibly have several origins. We also discussed my random occurrences of tachycardia, and I am wearing a Holter monitor for the next 24 hours. Hopefully that sheds some light on those issues.

The rest was an EKG, blood tests (cholesterol, liver enzymes, thyroid, inflammation levels, CBC, vitamin D, potassium, and anything else he wanted), making me set up an appointment for the brain MRI I've been avoiding, and x-rays for the toe I ran over with the bathroom door.

Just another day in my life.

Tomorrow I get the Holter monitor taken off. Next week I have a meeting with my doc to go over the results of all the testing, and the day after that I have my MRI. I have a feeling this summer will be interesting.

Oh, and finals and moving are next week, as well. I'm petitioning the scholastic committee to have my grades scrapped for this semester, because my GPA is so low that if they don't, I will be on academic suspension. I know I should've taken medical leave, but I was stubborn, and I'm paying for it.

The call every pet owner dreads.

2010-04-18T00:44:00.000-05:00

This morning, I slept in, as I am wont to do on weekends. At some point I was awoken by the sound of the answering machine, and someone leaving a message about one of our cats. I thought she'd just gone to someone's house, and they were calling us to come get her. I was wrong.

The message told me she was gone, found by someone in their driveway, already expired. My world collapsed, my pets are my babies. I called the man back, asked him his address as my voice cracked and the tears fell. After that call I went through the motions, getting the kennel into the back of my car, the pain paralyzing, sobbing. I drove just to the street behind us. Parked sloppily, the hurt, the need to see her prompting me to rush.

The man stood in his driveway, the sadness obvious in his features. I walked up to him, hair wild, barefoot, in my pajamas, the tears streaming down my face. He explained to me that he'd found her there, in his driveway, not a scratch on her, but somehow lifeless. My heart broke as I looked down at the box he'd lain her in. I couldn't take it. I thanked him for his kindness and picked up the stiff body of my little girl, not bothering with the box, wanting to put her somewhere more familiar, more comfortable. I laid her gently in the kennel, on the blanket she'd come with from the humane society.

The young girls who live in the house behind us, and directly across the street from the man who found her, took notice of the situation as I carried her lifeless body to the car. They cried out her name, surrounded me, knew my pain. She'd spent lots of time making friends with them. I was hugged, consoled, but it all felt so foreign and uncomfortable. I just wanted to take her home. Eventually I escaped, driving home practically blind, unable to stop the cascade of tears and the sobs that wracked my body.

I got home and brought her into the yard. I sat, stroking her fur and examining her for any injuries. There wasn't a scratch, no signs she'd been hit by a car. Her body, however, showed me that she did not go peacefully. It was then that I realized that something more sinister may have happened to her. You see, not everyone is good. Some people are monsters. One of those monsters lives quite near to us. He has voiced his opinion on our cats, aimed kicks at them, and has even been seen harming his own dog. I am hoping I am wrong, that someone would not willingly harm such an innocent creature, but the signs are all there.

Monday morning I will take my sweet kitty to the vet one final time, to see if her demise was the result of a very despicable act, or a mere accident. And when she is buried, a piece of my heart will go with her.

The cost of keeping a dog

2010-03-02T16:55:00.000-06:00

At this point, they're very high.
My little mini Dachshund, Oscar, has just been diagnosed with Cushing's.
Due to my medical bills and tuition, and my lack of a job, I cannot afford to pay for the final set of tests, let alone treatment.

This kills me, he's my baby :/

First week back, revisited.

2010-01-24T13:27:00.000-06:00

The first week back at school was difficult, I won't lie, but I survived. Here's a recap of how my week went:

Sunday: My family helped me move back in. It took two trips and a little bit of yelling, but we made it.

Monday: Martin Luther King day, no class. Spent the day sleeping, relaxing, and watching TV.

Tuesday: First day of classes. My only class was at 1:15pm, on the East part of the other campus. I made it, only a couple minutes late.

Wednesday: Monday, Wednesday, and Friday are my busy days. I had to get up at 7:45am to make it to my 8:30 class. I got an hour and fifteen minute break before I had to get on the bus to make it to writing. Immediately after writing, I had to walk a block to my Math class, in a huge auditorium. I sat at the top because there was no making it down those stairs.

Thursday: Two classes. First I had my lab for my Animal Science class, followed soon after by my peer led math discussion. After classes, I went to the poster sale that was being held at the student union. I ended up leaving with three different House posters.

Friday: Basically a repeat of Wednesday, only we actually started working on things and I had two assignments due. I took a nap between Animal Science and Writing, but for some reason, my alarm didn't go off. I was almost 30 minutes late for my 50 minute class. Thankfully my writing teacher is pretty awesome, and he let me slide. Math peer discussion was uneventful.

When I got back to my room, I found that I'd missed a phone call, and the caller had left a message. As I listened to the message, I realized that this could be the biggest coincidence in a while, but that's for another post.

Recap, back to school.

2010-01-17T13:14:00.000-06:00

So, after a nice, long Christmas/New Years holiday, and 2 surgeries in under two weeks, today I must return to school. I am not looking forward to it. My lovely new dental implant hurts like nobody's business, my foot and leg are still not even remotely up to par, and I get exhausted at the drop of a hat.

I, for a fleeting moment, considered filing for a medical withdrawal this semester, but realized how much further behind that would put me. So tonight, with considerable help from my wonderful family, I will be moving back into my dorm room.

C'est la vie.

The hits just keep on coming

2010-01-11T06:27:00.002-06:00

Aside from everything else I've previously mentioned, I have a new ailment to contend with - oral thrush. I've lost nearly all of the skin on my tongue, and it hurts like you would not believe. There's going to be a call in to the doctor when they open.

I just want this over already.

Updates from back home.

2010-01-09T20:19:00.001-06:00

After one night in the hospital, I am pleased to report that I am home. The bladder issues resolved Friday morning, and I was discharged that evening. On my way home, my mother and I stopped at my favorite high-end grocery store, to pick up sushi. The sushi chef, who knows my order by heart, asked how I was doing.

By the time we got home, however, I was in excruciating pain again. I have been sleeping most of the time, only waking to eat and take my medications. I only get out of bed to go to the bathroom. For some reason, my throat is very sore, so I'm keeping an eye on that.

Seeing as I'm highly medicated, I apologize for this rather disjointed post. I shall leave you with a picture of myself and my hardware. One 2" plate and 4 screws that were removed from my right leg.

Not So According to Plan

2010-01-07T14:16:00.000-06:00

Everything did not go as planned.
Due to pain issues, as well as post-op urinary retention, my outpatient surgery is no longer.
I will be staying the night, and possibly tomorrow if things don't resolve.

The worst incident so far was when something went wrong with my foley catheter. I was in excruciating pain for a good five minutes while the nurse administered my meds, then got everything ready. I'm better now that the foley is out, but I have to pee like you wouldn't believe...and I can't.
Here's a picture of me just post-relief of the foley pain:

I'm very pale in this picture due to the amount of pain I was in. My heart rate increased to 102bpm during the incident. I am better now, but I'm hoping no other things happen.

Thanks for all the kind thoughts! I appreciate it.

Pre-Op Posting...in Pre-Op!

2010-01-07T06:48:00.000-06:00

Yup, posting from inside the hospital.
Scared as heck, but I should survive.
Still not looking forward to another cast >.<

At least I get good drugs!

Under the Knife

2010-01-05T22:11:00.000-06:00

It scares the hell out of me.
On Thursday, I'll once again be going in for surgery, this time to remove the plate from my right leg and shave some bone overgrowth from my heel. Surgery scares the crap outta me, regardless of how many times I've endured it.
So wish me luck, 'cause I'm gonna need it.

Home for the holidays...life here is always interesting.

2009-12-19T02:03:00.000-06:00

I've come home for the month worth of winter break from college. Though I have another final on Monday, it's in the evening, so I didn't see the point in having to stay in the dorm for another few days.

It's quite funny, I came home on Thursday, expecting to spend Friday with my mother getting ready for Christmas. However, even the best laid plans can fall apart.

Thursday night my 9 year old sister became ill. Now, vomit is something no one likes, but as an emetophobic, I do get quite irrational when someone in our house is ill. I would normally sleep in my sister's bed, as there aren't really enough beds here since I've moved out, but seeing as she'd vomited and the room had that lingering smell, well, it wasn't going to happen. I, therefore, spent a good bit of time trying to sleep on the linoleum floor of our laundry room, which also happens to be my dog's room. Needless to say my body and the floor were not making very good friends, and my little mini Dachshund kept snuggling into the sleeping bag where I thought I would squish him. I finally gave up at about 3am and moved into my little brother's lofted bed, which is like sleeping on a slightly softer floor.

Today? Did a whole lot of nothing. Went to the store to pick up electrolyte drinks, broth, and Jello for my sister, napped, and that's about all. Happy Holidays indeed.

Finals week is evil

2009-12-17T04:33:00.000-06:00

It's 4:30am here in the frigid Midwest, and I'm still awake.
Why?

Because I have finals tomorrow. Two of them. One is bad enough, but two in one day is torture. One is comprehensive, the other only covers the past 7 lectures. I'm not sure at this point whether I should stay up, my first final is at 10am, or attempt to get an hour or two of sleep.

Either way, I'm gonna hurt later.
Gotta love college

Tragedy Poetic

2009-12-14T01:54:00.000-06:00

I sit for a moment, taking in the staccato signals from my body to my brain. The pain weighs heavy on me tonight, one of those rare nights where it crosses the threshold from tolerable to torment. I know I'll not sleep unless I find a way to keep the neurons at bay.

I stand from my perch, coccooned in blankets at my desk. My body drags and I limp the mere feet to possible salvation. I clasp the keys in my hand and bend like the skeleton of a tree to reach the box under the chair. A small, black, unassuming case and its lock are all that stands between myself and possible freedom, at least for an hour or two.

I return to my hideaway, box in hand. Once seated I carefully meet key to lock, turning just enough to free the lid and gain access to sweet relief. I rifle through my stash - the medications I've saved for nights like this, knowing that callus, tired physicians are none too willing to prescribe some of the contents, their profession having hardened, jaded them. The labels cry out to me, familiar names, as I count the remaining pills in each bottle. A single Vicodin sits lonely in its spacious keep. A smaller bottle bares but one Valium. I spy a pair of Flexeril milling about in yet another container. These are just some of the residents in my box. The bottles all nestle together, all saviors, regardless. The rare with the readily provided, the mundane with the magnificent.

I weigh my options. The list narrows as I remove a contender due to difficulty to acquire. You'd have better chance getting a refill from the dealer on the street than a legitimate prescription. Another ticked off, not quite up to the task. I continue to weigh my options, my fields ever narrowing. At long last I decide, a contender I'd previously dismissed due to difficulty to procure.

It's nights like these that I loathe the physicians who have put down blanket rules for all patients, people they could help but won't, due to the illegal actions of the despicable souls who use the real illnesses of others as a ruse to get what they think they need.

Happy Birthday...To me.

2009-12-10T01:18:00.000-06:00

21 years ago today I made my entrance into this world.
21 years later I've lived, I've learned, and I'm still here.
I'm looking forward to the rest of my life, day by day.
Cheers.

Let It Snow

2009-12-09T01:08:00.000-06:00

It's snowing tonight in Minnesota.
Actually, it's been snowing all day, and it shows no signs of letting up. Schools and businesses are closing left and right. Unfortunately, college rarely gets canceled. This means I'm going to have to get my arthritic butt up at 9am and attempt to hobble to my classes without falling, hurting myself, or dislocating anything. Joy.

My whole body rebels a bit more with every degree drop in temperature.
But, that's life I guess.

Getting to do something crazy

2009-11-27T23:51:00.000-06:00

Today I got to do something amazing.

Seeing as it's "fall", the weather changes have had me exhausted and sore, but I still try to get out every once in a while. Tonight I got to go snorkeling. I live in Minnesota, so snorkeling in November doesn't exactly seem like it would happen. I do, however, live somewhat near the Mall of America.

Underwater Adventure, the aquarium tunnel thing, has recently begun offering the chance to snorkel in their Rainbow Reef tank. Tonight that is what I did. It was amazing. Being that close to so many amazing tropical fish, getting to visit their world, the exhaustion and soreness was well worth it.

Happy holidays!

30 Things About My Invisible Illness You May Not Know

2009-09-11T14:12:00.000-05:00

Figured I'd do this, to give a little more info about myself.

1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: I can remember.
4. The biggest adjustment I’ve had to make is: Accepting the fact that there isn't a real treatment for this.
5. Most people assume: Nothing is wrong with me, and I complain too much.
6. The hardest part about mornings are: Just getting out of bed.
7. My favorite medical TV show is: House M.D.
8. A gadget I couldn’t live without is: My iPod. Nothing makes me happier than music.
9. The hardest part about nights are: Trying to fall asleep when I'm in so much pain.
10. Each day I take 7-11 pills & vitamins.
11. Regarding alternative treatments I: Will try anything to ease the pain.
12. If I had to choose between an invisible illness or visible I would choose: Invisible.
13. Regarding working and career: College is very difficult, what with getting up early and all the walking/stairs.
14. People would be surprised to know: I was told I would never succeed in college, but so far I'm doing great.
15. The hardest thing to accept about my new reality has been: There are things I love that I can no longer do.
16. Something I never thought I could do with my illness that I did was: Ski.
17. The commercials about my illness: Don't exist.
18. Something I really miss doing since I was diagnosed is: Being able to run.
19. It was really hard to have to give up: My dreams of being a chef.
20. A new hobby I have taken up since my diagnosis is: Horseback riding.
21. If I could have one day of feeling normal again I would: Run around, go downhill skiing, spend all day enjoying life.
22. My illness has taught me: Not to judge people so quickly.
23. Want to know a secret? One thing people say that gets under my skin is: "Did you know you parked in a handicapped space?"
24. But I love it when people: Know what my illness is, and understand.
25. My favorite motto, scripture, quote that gets me through tough times is: I am not afraid to keep on living.
26. When someone is diagnosed I’d like to tell them: Keep your head up, don't let this stop you from taking on the world.
27. Something that has surprised me about living with an illness is: How ignorant people are.
28. The nicest thing someone did for me when I wasn’t feeling well was: Let me sleep in.
29. I’m involved with Invisible Illness Week because: I'm sick of hearing, "You don't look sick!"
30. The fact that you read this list makes me feel: Grateful.

Having an okay time, until...

2009-09-03T19:18:00.001-05:00

So far college has been okay. I moved in, got unpacked, and have been doing Welcome Week activities. Today, however, I managed to piss off the gods of chance, and paid for it.

I was participating in a competition of sorts, and I was to imitate a Jaguar. This entailed crawling around on all fours and growling. I figured, it's been a good day, so I did it. Right as I finished my imitation, I simultaneously put my knee down on my hand and yanked my hand forward.

Dislocated my index, middle, and ring fingers on my left hand all at the same time.

Well shit. I popped 'em back in, got an icepack from the student center, and kept going.
Fun.

Moving day is coming...

2009-09-01T01:48:00.000-05:00

That it is.

This Wednesday (also known as tomorrow) I will be moving into the place I will call home this school year - my dorm room. I've been packing for the past couple of days, finally went shopping today, and have been all-around neurotic. I'm not sure how I'm going to handle it, but I have to push forward.

It hasn't helped that my back and fingers have been acting up, making packing and getting everything done rather difficult. I've been downright exhausted. I have to say goodbye to my beloved doxie, Oscar, and my cats. The whole idea of going away for school, the money it's going to cost, the effect it's going to have on everything, just drives me crazy.

It definitely doesn't help that I now have to transfer all of my healthcare to a new city. I have to find new doctors, explain my condition a million times, answer the same questions and hope that they listen to me. I have to register with Disability Services, which I'm doing on move-in day, so they know what's up and I can get help from them. This whole thing is a gigantic pain in the arse...but I'll live.

I know that the first few weeks are going to be a mess, but hopefully it will mellow out after that.

Who knows, maybe, under all the stress and panic, I'm just a little excited.
:)

Welcome to my little alcove somewhere in a corner of the vast internet

2009-08-29T02:02:00.001-05:00

I've avoided creating a blog detailing my life with Ehlers, because I didn't want it to define me.
However, I now understand that there is no denying such a huge part of my life. I believe an introduction is at hand.

My name is Jessica, and I was born some 20 years ago in South Dakota.
From the time I was young, my mother noticed some things about me that didn't seem quite right. I was late to walk, often sick, and complained of pain. At that time, we were poor, and had no insurance. The doctors, for years, said there was nothing wrong with me.

As time went on and I got older, school started becoming more and more difficult. The school insisted I had a learning disability, however the reality was that I was in pain. Seeing as I had no medical diagnosis, I was labeled as having behavior issues. The pain continued, some of my joints would spontaneously dislocate, and I continued to see doctors about it. They were rather arrogant, uncaring, telling me it was all in my head. I was quite sure it wasn't.

Finally, when I was 15 years old, an orthopedist noticed something odd as he examined me, and referred me to a geneticist. That gave me hope, that maybe someone would finally figure out what was wrong with me. At age sixteen, I saw that geneticist. She examined me, had me perform several tasks and movements. When she was finished, she gave me the answer I'd been waiting for; it wasn't all in my head. I had Ehlers-Danlos Syndrome, type 3. She explained to me that the collagen in my body was defective, and that's what was causing my pain and dislocations.

In the years after my diagnosis, I saw many more doctors. Some understanding, some still ignorant. I've been "fired" by doctors, because they had exhausted treatment options and could not help me. I've been diagnosed with other secondary conditions as well. Aside from the Ehlers, I have scoliosis, a flared ribcage, arthritis, TMJ, tibial torsion, planovalgus foot deformity, the last two corrected through surgery, however, this isn't a full list.

My day to day life is painful, but I keep going, because I'm not going to let this take me down.
This is me, take it or leave it.

Slideshow of Surgery/Hospital Pictures WARNING, MEDICAL PHOTOS

2009-06-02T09:16:00.000-05:00