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

Long overdue! So, what's in store for 2013?

Hey guys!

I hope you all had an amazing holiday season! I ended up dealing with a few health hiccups over the holidays, here's an overview:
Dec. 23rd - Found a lump in my right breast. We have a huge family history of breast cancer. I panic.
Dec. 24th - Went to my GP, she said she didn't think it was cancer, but one of the symptoms other than the lump, raised a red flag. She said I could possibly have a brain tumor. Scheduling person was out of office, had to wait until the 26th to schedule an MRI and a breast ultrasound.

The ultrasound came back clean, no cancer. The MRI, on the other hand, showed a "fullness" in my pituitary. I have to see an endocrinologist, because I probably have a microadenoma. Lovely.

Fast forward to 10 days ago. I was walking down the stairs to go outside and get the mail, when Codi, my mum's Dachshund, got underfoot. I managed to miss the last two steps and land full weight on my left foot, and my ankle rolled. I felt things snap. My ankle immediately began to swell and I was in terrible pain. I called my stepdad to take me to hospital, but he was busy picking up my siblings, so I had to drive myself! At the ED, I was seen by a doc who thinks I'm a drug seeker. They only gave me Percocet and Vistaril, which barely took the edge off. After x-rays, a questionable visual exam, and medication, they discharged me with nothing more than a bag of ice.

I spent the weekend in agony, walking on my horribly mangled foot/ankle. On Monday morning I saw my GP and told her of my miserable hospital treatment, and she pulled up the records from my ED trip. Turns out I was supposed to be discharged in a splint and on crutches! I agreed to the splint, but since I'd been walking on it, I said to hell with the crutches. Over the rest of the week, the bruising began to fade, but the swelling persisted. Finally, this morning my mum called every orthopaedist she could find, to try and get someone to see me. She found one, and I went to my appointment right after she picked up my x-rays from the hospital. Turns out that the splint my GP had given me was insufficient in stabilizing my ankle. I am now stuck in a fancy Aircast until they tell me I can take it off. Joy. I will post an update soon with pictures of the evolution of my ankle, from right after the injury to whatever day I post.

As for why I was MIA for almost 8 months: 
Basically, I was used by a money grubbing idiot to scam an insurance company.
I got into a car accident in July of 2010. Some woman tried to beat a red light, I happened to be making a left turn, cars collided. About a year and a half later, someone shows up at our door and serves my mum and I a summons. The woman who hit me was suing us for $75,000. Because of this, I had to make my Facebook private, keep my Twitter posts vague, and shut down my blog. It sucked, I wanted to vent about this horrible woman and what she was doing to me and my family, but I had to keep quiet. She claimed she was disabled now, was owed emotional damages and back pay, etc. When we asked for her medical records, it showed she had a TON of pre-existing conditions. She had ignored the doctor's suggestion of PT and went to a chiropractor instead. She was on hardcore narcotics, like Fentanyl and Suboxone PRIOR to the accident! I was livid, she was making up lies! My theory is that she saw the new car (a gift for graduating high school from my parents) and that I was young (22 at the time of the accident) and saw easy money.

In November, the woman agreed to settle. She got $12,500. The law failed me. As for her inability to work and permanent disability? She now works in a coffee shop, which requires standing all day, and she attended/worked the 2012 Renaissance Festival. Basically, she flat out lied...And they paid her for it. Honestly, I'm just glad it's over. I want to forget.

New things in store for Falling Apart At The Seams this year:

• Product reviews! I'm going to try to find companies with useful products for those of us with limitations.
•  Giveaways! I'll be trying to get companies to donate products for me to give away. All will be geared towards disability, comfort, and assistance items.

So, in the famous words of Porky Pig; "Th-Th-Th- That's All Folks!"

-Jess

Chasing Ghosts

I have spent the past three days chasing ghosts.
On Tuesday I went in to the doctor, because the pain in my feet was getting really bad, and the bruising and swelling was freaking me out. The original options for diagnosis were: swelling related to my old surgery sites or vascular insufficiency. The doc took xrays just in case.

Later that day I get an alarmed call from the doc saying the radiologist found stress fractures in my feet. Their scheduler was out of office for the day, so I had to wait until Wednesday to call back and schedule an MRI.

I had the MRI yesterday, and today the results came in. Turns out the original radiologist confused my old surgical sites for fractures on the films. MRI cleared that up and also pointed out the reason for the pain/bruising/swelling. Turns out I have a really severe case of tendinitis/tendinosis.

Just my luck.

Help Me Afford A Wheelchair!

I found out that insurance will not cover a wheelchair for me, just because I won't be using it 24/7! I can move around my house, with some difficulty, and walk short distances, but I can't stand for long periods of time or walk longer than a block or two. So I started a fundraiser. Please, please, PLEASE share this with as many people as you can. Post it on your blog, Facebook, Twitter, wherever. I need this to reach as many people as possible, so I can make my goal. Any leftover money after I purchase the wheelchair will go to medical bills and assisted devices.



Thanks guys!

The House of Broken Bones + Update

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!

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!

Getting A Wheelchair

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

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.)

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.

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.

Another Surgery Is On The Horizon

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 :)

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.

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!

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!

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

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.

Tragedy Poetic

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.