What's Up?

So I figured I'd post a little update for now until I can get some real content added. Recently I've been just overall run down, so not feeling too great. So here's some stuff that is going on in my life:

-I have to make an appointment for yet another sleep study
-I was once again denied SSI
-I've been tired constantly
-I adopted a second dog

and last but not least, some big news! In the coming months, I will be moving. Literally dropping everything and starting over in not only a new city, but a whole new state. I will be moving across the country to the East Coast, leaving all of my friends and family behind. I will be moving into a house with a friend of mine. She and her boyfriend will literally be the only people I know there. It's a big deal, this is the first time in my life I will be somewhere where I can't just drive to my parents' house if I need to. My family has also told me that if this falls through, I am entirely on my own, and they will not be helping me. There has been a lot of fighting and love lost between my mother and I recently. It truly feels like she doesn't love me like she loves my siblings, and that my being disabled is a burden to her. She's actually told me to do things around the house she knows I can't do, and that I'm not doing enough, when physically I can't! She should know better than anyone, but instead she's just as bad as the people who tell me I shouldn't park in handicapped spaces because I don't look disabled. It hurts. I've told my family that I will not be returning, or visiting. If they are going to treat me like I don't belong, then I'm done with them. I look forward to taking my dogs, my cats, and my things and moving forward with my life. I deserve to be happy, so I'm making a change. I will update again soon with a few interesting topics, including a post about my new corset!

Until then,
-Jess

Another day, another diagnosis.

Over the last few months, I've had an amalgam of odd symptoms I've been trying to ignore. Bad idea, I know, but I really did not want to go back to the doctor. On top of everything, I had been helping a friend after the death of his parter, and that meant a lot of watching his two gorgeous little girls while he went to work. I went from doing almost nothing, to taking care of a two year old and a 6 month old for up to 8 1/2 hours a day. Though I did things in a modified way to make it easier on me, it still was exhausting, but so worth it. Those little girls made me feel like for once I had a purpose in life, it was awesome. I've never been big on kids, I'm not fond of them at all, but these girls changed all that. When the two year old would come curl up on the couch to watch Netflix with me, or the baby would fall asleep in my arms, it was a feeling like none other, and I'm glad I could help out when it was needed most. I refused to accept anything in return for watching them, because friends help out when they're needed.

Anyways, to get to the point, I started feeling extremely run down. I thought it was just due to not being used to that kind of activity level. Then my side pain started flaring up again, so I decided to go in to see my doctor. After explaining my symptoms and an exam, things got a bit dramatic. Turns out that my radial pulse was registering as much slower than my actual pulse. I had my pulse measured both ways, three times. After that I got to have the following:

-EKG
-5 tubes of blood drawn
-A Holter monitor for 24 hours

I came back after the 24 hours to have the monitor taken off. Then last Friday I went back to go over test results.
-Low hemoglobin and hematocrit
-High Lymphocytes and ESR
Everything else was normal. So off to the lab for another blood draw, this time to do a peripheral smear.
Those results came with the fun diagnosis of normocytic anemia, which normally occurs in people 85 and over. Yay, my life.

So now I get to go back in to have more blood drawn (vampires, I tell ya!) to check my iron levels. I'm just so exhausted, no energy at all! I want to find out what's up so it can start being treated, I hate being this tired.

In other news, I'm trying to find a way to be able to see One Direction on Thursday. I have a major love of boybands, and it's my goal to see all of my favourites. So far I've seen The Wanted and Big Time Rush, but have yet to see One Direction or Union J. A lot of my friends make fun of me for my boyband love, but I've been into music basically since I was born. I was practically raised by musicians. I just happen to have a soft spot for singers, because up until a post-tonsillectomy infection in middle school, I sang all the time. I did choir concerts, solos, and performed with a singing group. I love voice as an instrument, hence my love of boybands. One Direction is one of my favourites, I watched the X Factor UK season 7, which is where 1D were formed, and I loved the boys' individual auditions (Liam's was especially gripping), as well as their first performance as a group. They've come so far, and I'd love to see them up close. I'd kill to meet them. We'll see if I can even manage to find someone with a ticket that is a. floor, so I don't have a ton of steps to climb, and b. willing to give me a deal, because I am so broke I actually have a negative income.

Anyways, I hope my fellow zebras are doing well, and I hope to actually manage to get back to regular blogging soon!
-Jess

Review: OnePiece jumpsuits, the must-have article of clothing!

Some of you may have seen the OnePiece jumpsuits before. They are quite popular with celebrities. I learned about them myself from the celebrity gossip blog I read. When I saw them, I knew I wanted to get one, and I knew that I needed to share the information with my fellow zebras.

The OnePiece was created in Norway, and is basically the love child of a hoodie and a pair of sweatpants. Roomy, with a zipper that goes from the crotch to the top of the hood, so you can cover yourself completely if you'd like. If you're like me and live in a climate that is three parts winter to one part sweltering hot, you'll see the appeal. If you're also a zebra with joint pain, you can also understand the wonder of this garment.

I sent the company a blog sponsorship request, and told them why I have this blog, what EDS is, and what it's about. I was denied, but they offered to send me one as a gift, as the lovely digital marketing director admired my story and courage. I was touched, it was a very sweet gesture. I was given four choices, all the same design but different colours. I chose this one, and it was sent out to me soon after.

When it got here, I was so excited, I put it on right away. It was comfortable, made of lightweight 100% cotton. There were two zipper pulls, fabric, and large enough that anyone could pull them. The zipper is two-way, so you can pull one slide up, and then unzip that by pulling the second slide up after it. The jumpsuit also has two huge zippered pockets. I can fit several pill bottles, large and small, in each, which is useful if you have meds that need carting around like I do. Overall the jumpsuit is nice and cozy. You can wear it over clothing or with nothing but your skivvies underneath.

My favourite thing about the jumpsuit is that it's basically made for ease of use. Large zipper pulls, baggy, roomy pockets. It kept my achy joints warm and less achy with as cold as it's been here. Honestly, if you're looking for something comfortable to lounge around the house in, this is it! To wash, zip it up, throw it in the wash under a delicate or hand-wash cycle, then hang to dry. Or just wash according to the instructions.

I happened to get a second OnePiece jumpsuit, a Christmas gift from my family that was a pre-order and didn't get here until April 1st, but it's snowy again, so it's been useful as well! This one is from the Hands By One Direction collection. Yep, at 24, I'm a 1D fan! Anyways, a huge thanks to OnePiece for the gift, I absolutely love it and will be living in it as much as possible!

STOLEN! Update

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! A Disturbing Trend Hits The Disabled Community.

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

Eff Being The Sick Girl

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)

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!

An Update, and A Call For Prayers

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.

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.

Costochondritis...Hurts Like Hell

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.

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

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

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

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!

Finals week is evil

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