Breathe – A Chronic illness Pep Talk

Hey guys, I uploaded a new video a few days ago! This kind of video style is something I’ve been wanting to do for a while, and I would really appreciate your feedback 🙂 The past few days have been rough, but I’m working on staying positive.

Soft hugs

XOXO

Emily

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You are the most beautiful

Early this week Tim and I went to see The Danish Girl, a bio-pic about a married painter in the 1920’s who feels as though he is a woman inside. It’s a beautiful film that covers trans issues and showcases some beautiful art pieces along the way. Here’s an interesting fact about me: although I was born a girl and am quite girly, I am extremely drawn and interested in transgender videos, YouTube channels, and movies. The idea of someone finally being able to be comfortable in their body, and working towards that is satisfying and beautiful to me. Now, I’m going to make a comparison, and I want you to keep an open mind, but I’ve come up with a theory of why I connect with these people so well. Chronic Pain and Being a Transgender Woman/Man have a lot of similarities.

Both:

  • Seen as things that are fictional or “In our heads” to a lot of people and doctors.
  • Feel trapped inside the body
  • Feel limited by the body
  • Can become heavily depressed by their situation
  • Treatment options are wide and don’t fit everyone
  • But it’s usually a lot of pills daily
  • Most people deal with their situation from birth
  • Most people are made stronger and kinder by their situation
  • Are told that they need to just deal with what they have

No one should be told that they need to live in misery for the rest of their lives. I’m a strong supporter in both trans issues and chronic pain management. The character Lilly made me want to cry numerous times, because she was such a kind and beautiful girl that got told by numerous doctors that she was crazy, until she found the right one.

“Einer felt lonely, and he wondered if anybody in the world would ever know him.”

In other words, the paintings of ballerinas inspired me a ton, and I worked quite hard on this painting. If you haven’t caught on, every doodle/sketch/painting you see on this blog is done my yours truly! I really enjoy creating things..

 

Soft Hugs

 

XOXO Emily

Winter Hasn’t Been Nice

  
So my previous Doctor finally prescribed me a months worth of oxy. This happened because my mother actually called and demanded to speak to a supervisor (like a boss), and worked some magic to get the nurse to call me. She informed me that she simply “figured” I would call back, and was very sorry. Apparently the perscription had been sitting in the office for a few days (which is a lie because the script had the date that I came to pick it up written on it). 

They filled the 10 mg for four times a day, but since I went through withdraw, my tolerance was down. So since then I’ve been taking half of a pill 4-5 times a day, depending on the day. This is purely due to me being on survival mode and not knowing when I will get a good doctor. Truth is I haven’t been doing good at all. Tim talked in his last post about me being unsure about my fibromyalgia diagnosis, and that is where I’m at. You can check out his post to go further into that topic. 

Lately I’ve been using this stuff called Perform by Biofreeze. It helps numb the painful areas a bit, and kind of distract you from the pain. Pluto (our Morkie puppy) goes crazy over the minty scent of it. I’ve also been trying to use Advil in between the oxy. Fun, fun, fun.. 

Speaking of pain medicine..the CDC recently had public comments open for the Proposed Guideline for Prescribing Opioids for Chronic Pain. I posted my comment and I wanted to share it here. It’s also on my tumblr if you want to reblog and make a change. 

I am a 19 year old girl who has suffered with chronic pain since the age of 10. Although my case is rare, I am not alone, and I am speaking for everyone young and suffering. Doctors hear me speaking about my pain and all they ever hear is the opioids. Over the counter medication is a joke, and the fibromyalgia based meds are not effective. I am bluntly told that I will be in pain for the rest of my life, but that I should learn to live with it. What you must understand is Taking opioids helps me get out of bed, perform on stage as a singer, see a movie with my boyfriend, and stop crying in the middle of the night from a flare up.The rules are so strict, that I’ve been treated like a drug seeker when I show up in the ER screaming in pain because my doctor didn’t want to be involved with narcotics anymore. Being denied a new doctors office simply because an opioid was in my medication list and they “Did not want to get involved in that”. I am not a drug addict, and neither are the sweet girls I’ve talked to and seen on social media. Many of these young people use canes and take back braces or stuffed animals to the movies to ease the pain, and we are doing these things along with taking prescribed opioids improve the quality of our lives. ♡

– Emily Inman

Soft hugs,

♡Emily♡

Staying Positive with Chronic Pain

When my close friends or family asks how I’m doing (If they know about my illness) I’ll usually reply honestly. “Nothing’s really changed much, dealing with a lot, but staying positive.” When I was younger and even now, my mother, who has her own hurricane of problems, would reply a lot differently. She would lower her voice and with a sigh explain in detail all the bad things happening with her illness. It would automatically bring down the mood in the room, as the opposite person would nod with fake empathy and occasionally go “Aw, what a shame” or “God love you, you poor thing”. Usually when a distant friend or relative asks me how I am, I just lie and say “Good!” to avoid doing what my mother does. But now I realize there is nothing wrong with briefly being honest with closer friends, but still staying on a light note. I usually don’t ever go in to detail unless someone specifically asks, and looking at all my conversations, I tend to do this with most topics.

Staying positive doesn’t mean pretending that you are fine when you are in pain all the time, it’s learning to accept that you are. It’s learning to laugh in a horribly decorated doctors office, or noticing the pretty colors of your meds. (Mine are pink, blue and white 🙂 It’s knowing your limit, laying down and knowing that’s okay. Watching your favorite movie during a flare up. Looking at pintrest in your favorite sections when you can’t sleep. Taking about the struggles you are having, and then letting go.

And yes; being positive also means that when my mother sends me seven long texts about everything bad that is happening, I simply say “I’m sorry you are going through a tough time” and I send her a uplifting picture like this one:

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Crying Times

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Lately I haven’t been wearing makeup very often, and the reason for that is odd. I’ve actually been crying so much because of Pain or Panic attacks, or random disassociation, that I find a winged liner just doesn’t want to stay on throughout the day. This illness can be extremely isolating. It can make other’s frustrated because they can’t help you, or they can’t understand what you have. Even though Tim doesn’t understand exactly what it’s like to me be, he’s the only person that sees me at my best and my worst these days. He sees me smile at people and politely tell them I have to go home early for whatever reason, and then crawl into bed sobbing because I pushed myself too hard. He sees me count the hours on my hands carefully, figuring out when I can safely take my next pain pill. (1 every 4-6 hours, is emphasized by your doctor, not to break this rule). Being with someone who understands living in misery, whether that be in your head or your body, is helpful. If I’m crying at 2 am because of neck pain and I tap Tim sleeping next to me, he will open his arms, eyes closed. Even in his sleep he will offer to hold me, and that is a comfort I wish for everyone. I’ve been having strange panic attacks, one of them was so bad that I was crying hysterically. I felt like a 5 year old. Somehow, Tim calmed me down. I’ve also been having a lot of tummy pains lately. My doctor had to call in a nausea medicine (Oh Joy, another med to add to the slurry..) that I take whenever it gets too painful, or when I throw up. It may be from the long list of meds I’m taking, or maybe its another Fibro thing, or maybe stress. If anyone has some insight, let me know. Sorry for the sloppy sad, uncolored drawing above. I drew it in the dark last night when I wasn’t feeling too well. I still thought it fit this post though. A new video should be up in the next day or two. It’ll be my first video talking about my Chronic Pain. I talked all about my first (And last..) appointment with pain management. Long story, I explain it all in the video. For now, I’m trying to stay positive when I can. I’m trying to keep up with my meds, eat regularly, draw, color, make things, watch content that makes me smile, and breathe deeply; Just breathe.

 

Soft Hugs,

♡Emily♡

A Midnight Secret ☾

 

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☽ A Midnight Secret☽

By Emily R. Inman  

                                                  

I am awake

I can easily break

when I’m awake alone.

I stir and I sigh, not a gleam in my eye,

I can’t smile, or laugh this time

An hour passes by, I silently cry, take another half pill, and I wait

My lover is asleep, and even when I squeak, he sleeps heavily and does not feel the weight

I sneak out of the room, puppy paws follow, and I sit on the couch and write.

Hoping that getting it off my chest will help me sleep tonight.

But I’ll tell you a secret that my body knows, the reason brain and bones do not want to slow..

When I wake up from a beautiful dream, the nightmare of pain envelopes me.

XOXO

♡Emily♡

8 Tips For Dealing With Chronic Pain

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In my first post about my Fibro, (Click here to read) I briefly mentioned that my boyfriend is very helpful with my process; and he is, more than I can express. It got me thinking of more things that help me personally when I have flare ups, and working with my body to be prepared for them. I’ve compiled a list of things that help me, and may also help you with your Chronic pain. I find its much more helpful to read blog post from those who have unique advice other than reading a “wiki how textbook” how to post. (Yeah, yeah, we all know sleep and plenty of water is helpful for everything, wiki, you aren’t helping). So here it is in no particular order.

  1. Jasmine Green Tea. Holy, Moly, I’ve never craved green tea so much in my life than now. I drink it 2-3 times a day. First thing in the morning with my pain med (My Puffin brings it to me, sweetly)It not only has inflammation reducing and pain reducing properties, but it’s also delicious. Jasmine Green tea is my favorite, but there are hundreds of calming comforting teas out there. Try some until you find the one that clicks.
  2. Stuffed animals. Yes, I am that 5″9 nineteen year old girl that brings her stuffies to the E.R.during really bad flare ups. It is extremely comforting. I’ve also slept with one in my arms my entire life, not just because it’s snuggly, but because it puts my arms in a flattering position to reduce neck pain in the morning.
  3. Heating Pad. I have never owned a heating pad until my Fibromyalgia got this intense. If i’m out and about and I get a flare, we go home I crawl in bed, take a pill, and turn on the heating pat. I place it in the place that hurts most, and rotate as needed. Very helpful
  4. Fluffy Blankets. A big comforting blanket is a must whenever you don’t feel good. My favorite for a while was my Calvin Klein plush, but my new favorite is my white Ralph Lauren Faux Fur blanket. Check Marshalls for good deals.
  5. A helping hand. Yes that picture above was drawn by me, (As is all the drawings on our blog) and it represents a sweet thing my boyfriend does for me. My hands/arms are sometimes the flare victim to my pain, so every now and then he will wash my hair for me while I’m in the tub. Sometimes even taking a shower can cause so much fatigue that it’s nice to get some help. Don’t be afraid to ask for help.
  6. Always keep extra pills on you. This one I sometimes forget to do, but when I remember I’m always grateful.
  7. Invest in bigger clothing. I know this is a weird tip, but even if it’s one size up in that sweater/skirt/dress/anything but jeans, you will thank me. Having Chronic Pain means our Joints hate us, and loosening that pressure makes a big difference.
  8. See a Therapist. I’ve been seeing a therapist my whole life, but I realize we live in a world where sometimes it’s considered “Strange” or “Embarrassing” . It’s not, infact it’s extremely healthy for your mind. Anxiety and Depression can be a big part of this. I also suggest the app ‘Pacifica’; It’s very good for mental health.

I hope these tips helped, that’s all I could think of at the moment, but If I think of anymore I’ll make another post in the future. Let me know what helps you and your Chronic Pain in the comments below.

XOXO

♡Emily♡

Making People Understand Your Chronic Pain

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Yesterday I went to the hospital. I was having a bad flare up, and after two Oxycodone, I knew my meds weren’t working. There was a horrible pain all across my belly, and it felt like I was getting stabbed honestly in waves. I’ve come quite accustomed to going to the E.R., which is a shame, but that’s how it is. On average for the past couple of months I’ve gone to the E.R. At least twice a month; Sometimes more. Every time I went, they would take copious amounts of blood, sometimes X-rays or Cat-scans (Which is not good for a young body), and lots of waiting time. I had read a post on Pintrest of a lady who had Fibromyalgia as well, and she recommended getting a letter from your doctor explaining your condition. This is the first visit I used my letter for, and all it wrote was that I have Fibromyalgia, I’m waiting to work with pain management, and sometimes I need to visit the E.R. for morphine injections. The place was packed, so we sat in the waiting room for about an hour and a half, but it felt longer. When I finally got into triage, I gave the nurse my letter first and she was quite sympathetic. She asked minimal questions, and was soft spoken, but kind. If you are not familar with the E.R., after Triage, they usually get you into a room with a bed, however, I was wheeled back into the waiting room for more…waiting.

Finally when I got into my room (Which was the empty and creepy Psych room because they were running out of room..) My boyfriend helped me on the bed as I rolled over exhausted from moaning in pain. I held my stuffed dragon tight and stayed patient. The doctor came in and I handed him the letter, which wound up helping him understand a little. Soon after he disappeared for a bit, he ordered my Morphine shot.

I had two nurses come in, the first one smelled like vanilla and was taking my blood pressure. The second nurse had the needle and asked me where I wanted it. (I answered my hip, it’s the most comfortable spot other than your tush) She held up the needle and pressed the air out, and this is when she said it to me..”Honey, you’ve got to find something that works, because this..” she gestured at the needle, “..is a lot.” I nodded. Now, why the hell did I nod at the rude statement? Well first off, the reason that sentence is cruel is because I have chronic pain. I’m 19 years old. I’ve been dealing with this pain for years. I’ve had parts of my childhood stolen from me because I’ve spent so much of it on sick days and in hospitals. If I had a better solution to my flare ups I would’ve used it, but it’s out of my control, it’s in my doctors hands. The reason I didn’t reply in anger is because people like that nurse will never understand what it’s like to be me. I’ve broken legs before, and it doesn’t depress me because I know those legs are going to heal, but my Fibromyalgia will not. My father will probably never know the full list of medications I take, because I know he can’t process what it’s like. Most people will not, and that’s why it’s important to know that there is no way to make people understand your Chronic pain. Reach out on forums, blogs, youtube, pintrest and this even this blog to find people that understand what you are going through. Don’t waist your energy and anger on those who cannot.

XOXO

♡Emily♡