Showing posts with label Illness. Show all posts
Showing posts with label Illness. Show all posts

Tuesday, September 24, 2013

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

Monday, September 12, 2011

STOLEN! FAQ

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

Sunday, September 11, 2011

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

Tuesday, June 14, 2011

Miracles do happen. Organ donors are true angels.

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! :)

Wednesday, May 18, 2011

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

Thursday, May 5, 2011

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

Cymbalta.
According to Wikipedia, "Duloxetine (sold under the brand names CymbaltaAriclaimXeristarYentreveis 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.

Thursday, April 7, 2011

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

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.

Thursday, March 24, 2011

Goodbye, you obnoxious little brat.

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.


Friday, January 28, 2011

One Sick Puppy

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 :(

Saturday, January 22, 2011

A Request For Prayers And Healing Thoughts For A Friend

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. 

Saturday, October 30, 2010

Sick again, oh joy!

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!

Tuesday, March 2, 2010

The cost of keeping a dog

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 :/