Wednesday, June 24, 2015

What to Pack When You Need to Go to the ER

Last week, I had to go to the ER. I hate the ER. It is always a last resort. That day I woke up with a high fever, nausea, bad GI problems, dizziness, generally feeling like I got hit by three buses, etc. I ended up having probably the worst possible version of whatever shitty virus is going around + my general pain.

Dad: "You look dead. Give me a thumbs up."
I couldn't hold down food, liquids or drugs, so my dad took me to the ER because I was so dehydrated I could barely move.  It took forever for them to bring me back after a lot of drama I caused in the waiting room yelling things like "poor care" and "I need to speak the administration immediately!" in my half comatose, angry state. Obviously the first thing they tried to do was get an IV in me, which seemed like an impossible feat. I think 6-7 nurses AND doctors each tried about 3-4 different times in all different spots, all with their own dumb theories about how to do it. One doctor even used a ultrasound to find veins and ironically, he was the fucking worst one.

The night I got home.
The next day. I've looked like a heroin addict for approximately a week.

I was in a bed in the hallway for several hours and eventually got moved to a bedroom and was able to leave late that night.

Below are a mixture of things I brought and things I wish I had brought. Because, damn, when better to be prepared, right?

  • Noise Cancelling Headphones - You will THANK me for this later. If you're stuck in the hallway with a headache for 1+ hours, all you hear is constant beeping, people screaming, doctors yelling. My body is sensitive to that shit. Even if you don't listen to music. Put 'em on.
  • Medical Wallet ID Card - I need to make one. I had been waiting until I moved to London so I wouldn't have to change all of my information 20,000 times before I moved, assuming I wouldn't have to go to the ER before I moved. Silly me.  Make sure it has your doctor's phone numbers, a list of current meds you're on, diagnoses, emergency contacts, allergies to things, etc. This is crucial, especially if you're too out of it to explain. You can even print them online and laminate them together. 
  • Packet of Medical Info including doctor's notes approving the medication you're on (especially if you're on narcotics), a description of diagnoses and how you're managing them, and a list of all the drugs you've had bad reactions to
  • Change of clothes - In the case you have to stay the night, or something gets vomited on, blood on, etc. Better to have them.
  • Pillow and travel blanket- ER people tend to forget you exist sometimes. Bring your own stuff. From my fever, I had bad chills and had to wait FOREVER to get a blanket. Brought my own pillow, which THANK GOD, but it did get covered in blood. Damn you ultra sound guy.
  • Toiletries, especially Listerine- if you puke, you will wish you could brush your teeth, I would also throw in a brush, some hair ties, tooth brush and tooth paste, some dry shampoo, etc. 
  • Drugs while you wait- You may have to wait awhile. In the mean, I had brought some Ibuprofen for my fever and headache, Zofran for the nausea and my typical pill box of fun pain meds
  • Phone and whatever other chargers you need
  • Snacks- even if you can't eat, your poor, miserable family members will get hungry 
  • iPad- you need to entertain yourself somehow
  • Squeeze Pig (or just something to squeeze)- I use my squeeze pig for injections but I could've totally used him when they were searching for veins for 2 hours. 
  • Wet wipes- Guess who left the hospital covered in blood. We can't all look like animals. 
  • Cool Towel - You wet this thing and snap it, and it stays cool for HOURS. Perfect for fevers. I wish I had mine. 
  • Eye Mask - Zone out, especially if you're sleeping over. (This is my new one.)

Let's hope this never happens again. Ever.

Tuesday, June 16, 2015

What I do for...

It's good to know what your options are when you're in pain and not thinking straight. Now that I'm starting to be able to manage my pain better and perpetuating factors (like IBS, PMS, hypoglycemia, etc.) I am slowly coming up with a good list of how to normalize my body as much as humanly possible. Sometimes when spasms or nausea/dizziness is unbearable and all else fails, I just drug myself enough to sleep through it. Sleep is so important. Do what you have to do to get whatever kind of sleep you need! For me, it's priority numero uno. And keep calm! My pain used to make me panic--now I'm easy breezy and it makes things go a lot smoother (and I make more rational decisions).

...muscle spasms/trigger points

...joint pain
*Something I have started doing now that I have a few drugs that work for me is taking it before if I know I'll have a hard day or the second it comes on. The last few weeks, my pain has been a lot more controlled doing this. Usually I have a mixture of joint pain and spasms, so I take a muscle relaxant like Metaxalone and 800mg Ibuprofen and that has been helping me. I also finally got around to keeping a pill box one me for when I'm out and crisis strikes. Stay ahead of it. 


I will add to this list as I think of more things. If anyone has any questions, please message me! 

Monday, June 15, 2015

Wrote A Piece for HerCampus!

Check it out here! And please share.

Here it is:

Her Story: A Chronic Pain Disorder Took Everything Away From Me

On June 20, 2013, the first pain specialist I had ever seen told me, “You are entering the beginning stages of the world of chronic pain.” And I bawled my eyes out.
Backtrack to eight months prior: I had just graduated from the Fashion Institute of Technology in New York City with a degree in International Fashion Merchandising with honors. I was styling for major magazines and celebrities, and I landed my dream job for a major designer doing sourcing, product development and production. I was one of the rare few that genuinely enjoyed my job. I loved what I did and wouldn’t have traded it for the world.
A few months after I began working, I became obsessed with the position. I was a total workaholic, and at some point, I completely stopped taking care of myself. I was no longer eating well, exercising or even sleeping. I got to the point where all I was doing was working, showering and ordering take-out every night. I stopped seeing my friends and tried to nap in my limited spare time. When February 2013 rolled around, it all came to an abrupt halt.
I woke up one Sunday morning in February that I will never forget: I couldn’t move my neck without an excruciating pain radiating down through my shoulders. I was transferred to the Emergency Care Unit of Hospital of Joint Diseases at NYU.
Little happened at the ER, aside from being pumped up with hard painkillers, anti-inflammatories and muscle relaxants. I was still vomiting by the time I was discharged. I was then sent to a myriad of doctors who tried to figure out what was wrong with me. Some had ideas (that were wrong), treated me for their diagnoses and ended up discharging me, telling me I was crazy or that the symptoms were all in my head. This happened several times.  
It got worse. The pain continued to travel down my back, the sides of my spine, through my neck—it was excruciating. To add even more devastation to the pain I was experiencing, I was forced to leave my beloved life in Manhattan. My paid disability leave ran out at my job and the lease on my perfect East Village apartment ended. I had to leave my dream job, pack up my apartment, and say goodbye to all my friends, then move home to Pennsylvania with my parents indefinitely. I was a mess. I was 23 years old and felt like my life was spiraling out of control.
At that point, I couldn’t even sit down for 10 minutes without crying from the pain. If I took a car ride for more than 30 minutes, I had to make a bed in the backseat to lie down. I couldn’t drive. I didn’t have friends at home. I was insanely depressed and was alone most of the time, essentially on house arrest because of the pain for months at a time. Brain fog from pain was so bad that I couldn’t concentrate on anything. I was rapidly gaining weight. I couldn’t cook for myself. I was so poked and prodded from so many blood tests from all of the different doctors that I looked like a drug addict. As I recently learned, I have metabolic issues with most drugs, so trying all of the new meds I was being prescribed by these doctors constantly made me break out in then-unexplainable rashes, vomit, and I’d get dizzy to the point of being unable to stand.
After seeing rheumatologists, GPs, physiatrists, PTs, sports medicine doctors, geneticists, neurologists, pain specialists, endocrinologists, and orthopedic surgeons, I was still not getting anything useful from anyone. I had a posse of residents following me around the hospital and calling me 24/7 to ask me questions. Nurses would make little cracks about “Erica and her entourage.” 
I was in so much pain that I was willing to try anything, including hypnotists and private meditation counselors. But it was finally decided that I had tried enough, and the only step left was to go to Johns Hopkins Hospital. I managed to get an appointment with the top pain specialist in the country, and in July of 2013, he diagnosed me with Chronic Myofascial Pain Syndrome, Hypermobility-Type Ehlers Danlos Syndrome and hypothyroidism. With these diagnoses he told me, as gently as he could, that there was a good chance it would never get better, and that there was a serious possibility I might never work again.
This ignited in me some serious determination. I told myself that I would get better no matter what and that some day, no matter what it took, I would work again. After rounds of new (more effective) drugs, physical therapy and weekly trigger point injections, I started to (finally! miraculously!) make some improvements. It wasn’t an easy feat. This strategy was absurdly taxing, both emotionally and physically. Everything was painful, but I very slowly improved.
I now get trigger point injections every month, and I work with a personal trainer that specializes in chronic pain, massage, reiki, therapy, chiropractic work and acupuncture on a regular basis.
I decided the best way to get my career back on track would be to attend a short masters program to show potential employers that I am still both relevant and capable. I also knew that a masters program would be an easier transition back to work after being mostly immobile for three years. I have always been an all-or-nothing kind of gal, so I decided to apply to a competitive one-year masters program at London College of Fashion to study Fashion Design Management with my focus on sustainability and ethical design practice. I knew it was unlikely, but I also knew I would kick myself for not at least trying to follow my dreams after such a painful and depressing time-out from my beloved career in Manhattan, which felt like a lifetime ago.
To my delight, I was accepted! With the most accessible and generous disability accommodations available, I will be moving to London and attending LCF in the fall and I have to admit, I am pretty damn proud of myself.
Not many people can relate to all of this. The fear, the immaculate planning, the general anxiety, the stuff you have to put up with from doctors and the judgment from people in general. I lost many good friends in this process—even people I thought I was really close to. The last two years have been gruesome, not just physically but psychologically. Watching all of your friends grow in their professions and their relationships—their lives overall, really—is hard to watch from your bed.
The coming year will undoubtedly be full of challenges and obstacles. Sometimes I feel like that’s what my life has become—a constant battle between what my mind wants and the more limited capabilities of my body. Prioritizing the things you want to do with the things you can do can be hard. But I can’t give this up. I will find a way to make it work.

Friday, June 12, 2015

Yesterday, I spent an entire day under observation at the doctor's office.

Yesterday, my mom and I spent an entire day with my doctor at Hopkins (and stayed overnight) so I could try my last and final pain killer for breakthrough pain. 

It didn't go well. 

I tried sublingual buprenorphine (which is pretty much just sublingual morphine equivalent). We thought it was a good idea because it was mixed with naloxone (supposed to help with some of the pain killer side effects) and thought the sublingual would dodge my digestive track. Boy, were we wrong. 

The first hour was great. But after, within minutes, I started feeling insanely dizzy, nauseous, itchy and sweaty.

It progressively got worse. I physically couldn't move or lift my head up. If I did I would throw up, which happened a few times. I had to keep my eyes closed because the room was spinning.

I hadn't eaten or drinken anything since 7 AM, when we left in the morning. I should also mention I am hypoglycemic, adding onto the problems I was currently having, I was on the verge of fainting at any time. My doctor and I had some back and forth. We didn't know how long the drug would stay active in my system and I needed IV fluid and a Zofran drip. I also couldn't physically stand or sit up and the idea of stretcher seemed really good, but I ultimately decided not to, for fear that some dumb doctor I didn't know would try and pump me with more drugs I couldn't handle, so my mom went out to get my a wheelchair, I vomited the whole way to the hotel and just focused on not dying.

At 10 PM, my mom got me Chick-fil-a (which I normally would be against given the LGBT platform) but it was the first thing I ate all day and I just wanted a god damn chicken sandwich. And it was delicious.

Saturday, June 6, 2015

My (New!) Inguz Rune Tattoo

Something I've been wanting for years and finally got done today! Took 5 minutes and was pretty much painless (to my surprise). I just love little symbols with big meanings and I love the meaning. (Plus we found out we're part Viking a few years ago.)

Here's the tattoo and the meaning:

I really connect this with my struggle with EDS. This is a motivational thing for me. 

I'm going to go continue being obsessed with it and staring at it in the mirror. Bye!