Methadone, Topamax, and Gabapentin Trials

A lot has happened since I last posted, Tim went back to work after the accident, and he’s been doing much better other then the headaches. He’s still seeing doctors about it and trying to figure out the best plan of action for him. I have a lot of hope that they will find something that works for him, mixed with time’s healing properties. It’s been hard to see him in any kind of pain, in a way it was watching a fear of mine come true; Tim having to deal with a constant pain. It’s very likely that it will go away, but there’s still that fear in me that it won’t, as I’ve seen what the body can do.

In the past few months I’ve been tried on 3-4 different medications in hopes of any of them helping my pain levels, but all of them only came with horrid side effects. The worst was the drug that every doctor had been pushing on me since the beginning; Methadone. I finally caved in and decided that I needed to give it a solid try. In high doses, this drug is used to wean heavy drug users off of things like,  Heroin, Codeine, Morphine, etc. It’s als0 widely used for chronic pain treatment, and for many individuals, its a miracle drug. I read tons of raving reviews, and although I was nervous (As I am starting any new medicine) I was hopeful.

Around the end of August I started the Methadone Trials

To sum up the entire experience, the week that I was on Methadone was one of the worst times of my life. You are required to cut your pain medicine way down, the methadone blocks most of the withdrawal symptoms, so what I was left with was my body in it’s almost natural pain state. Just, complete agony. I was brought back to nights before I was treated at all when the pain was intensifying at night and I would just cry knowing there was no way to stop the pain. If you have never been in chronic pain, this will be all very hard for you to imagine..but I’ve tried to explain it as if, someone invisible was torturing every part of your body nonstop, and theres so way of stopping them. It messes with your thoughts, it exhausts you, causes intense fatigue, and gets in the way of you functioning. With my DID, I would find myself disassociating when the pain would get overwhelming. I’d stare at the wall, mouth dry from the new medicine, hurting to even turn my body over. I took 3 warm epsom salt baths every day on this week and my boyfriend (whom was suffering from a concussion) would try to talk to me and keep my mind occupied so i could stay in the bath as long as I could. He was on temporary leave this entire time and he would help me so much even though he was dealing with his own pains. He’d still offer to make me tea, or just hold me while I cried, and sometimes I think we would just hold each-other so tightly because it was all we could do.

Finally when my mother came to see me she suggested we get in touch with the doctors an tell them what was going on. My pain team decided the medicine just wasn’t right for me in the end. I was instructed to go back to my normal pain medicine dose, but even as I upped it, the negative side effects of the methadone stayed in my body for almost a week. After It was out of my system, I had some of the most productive days I’d had in a while. I was out of the house a lot and functioning really well.

August 31st I started The Topamax Trials

They put me on a new medicine very soon called ‘Topamax’. I went down another rabbit hole, spiraling down. I couldn’t sleep for more than 2 hours without getting woken up by pain, even with my sleeping medication. The cycle would exhaustingly continue until I reached morning. In the day i was constantly weak and tired. I was overheating more, Eye dryness & burning, dry mouth, etc. I would try to take naps during the day, but they would seem to not help. This was no Methadone, but It was still almost impossible to function. I called my pain pharmacist after a while of this, and on September 7th we mutually decided to give the first medicine I was tried on for nerve pain (About 2-3 years ago) another try..

 September 7th I started the Gabapentin 2nd Trail Run 

This brings us to the present. I’ve been taking this drug twice a day now, and soon will up to three times a day. My body agrees with it quite well! No noticeable negative side effects. Sometimes it can work in conjunction with my pain medicine and help it work longer and maybe even better. I noticed this more in the beginning, but maybe I need a higher dose. I have a LOT of hope for this trail, and I plan to go hard at it with my pain team guiding me.

Soft hugs

xoxo

Emily R. Inman

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This Very Simple Life We Live

I know we haven’t really used this in a while, because we’ve become more involved with YouTube, but I (Tim) just wanted to give an update.

Following our YouTube shows a bit of us, but the truth is we’re always facing trails in our lives. Be it health (both mental and physical), money, feeling safe, or even being able to function, Emily and I are in a constant battle to maintain a normal life. Emily fights harder than I do, and my fight takes a deeper toll on me than her’s does.

The problem isn’t that we’re unhappy together, far from it, the problem is together we’re fighting in a world that seems unaccepting. Her father doesn’t really believe that Emily is sick. More or less, he believes she’s just becoming like her mother: something of a hypochondriac. I swear to you, with ever fiber of my being, I hate him for feeling this way.

Emily’s step-mother is worse though. Her step-mother is something of a ‘social-alcoholic’, and by that I mean she’s an obnoxious wino/drunk who lashes out verbally at Emily’s father and all of his ties to Emily (including Emily’s sister). From my side, I think of her as a blemish on the world, an ugly spot, that radiates sadness, anger, and negativity around her general vicinity.

That being said, I have a constant twinge of anger when I think of her father and step-mother, but I try to contain it, because I’m not helping by being so angry at them. Emily is so sweet, so idealistic, that she only feels sorry for them for not being able to be happy. I am so negative, that sometimes I can’t fathom how she doesn’t hate her father and step-mother.

I love Emily. I want to (and will) spend my life with her. But, going back to what I initially was saying, we’re in a constant battle.

Emily recently upped her Lyrica (a medicine for fibromyalgia) and it helps, but she’s still very weak, and unable to function. She told me yesterday something along the lines of she needs to space out her days with people other than me, because even talking to others leaves her with fatigue and pain.

I wish I could take her pain away, take her away from here, and give her the life she deserves. Sadly, I face every day knowing that we’ll live paycheck to paycheck in order to maintain this very simple life we live.

 

~Tim

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

Painting to keep busy.

Hi guys! I’m sorry there’s been a big space between the last post and this one, but I think it’s time I come back and chat. I’ve been doing a lot of painting lately. My paint collection has grown from a crayola watercolor pallet, to countless tubes of paint, brushes, and canvases all around the apartment! (Thanks to Tim!)

I’ve always been uncontrollably creative, and that comes out of any outlet it can. Singing has always been my passion, but since that has been difficult for me to do with my fatigue, I took up painting. I like using watercolors, but mainly acrylics.

I’ve put a few of my paintings up for sale on this new site I found, and I’m thinking about selling prints of work that I do on paper at some point. I haven’t sold anything yet, but I cross my fingers!

{ Click here to view my buyable artwork }

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♡

Over-Treated, Under-Diagnosed, and Completely Alone

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I know it’s been a long time since I’ve written anything or even done anything with this blog. Recently Emily has been back and fourth with doctors and dealing with her pain. It’s recently come into question whether or not she has fibromyalgia or something else entirely. To be very honest, the question has been posed more by her and I than any doctors (because all of her doctors don’t want to figure this out or, seemingly, even want to deal with her). So, what brought this generic diagnosis into question?…

Well, fibromyalgia has a few core characteristics that seem to be universal:

  1. Tenderness at sources of pain (i.e. touching the areas of pain causes excruciating pain)
  2. Gastrointestinal issues such as I.B.S.
  3. Exercise helps in dealing with the pain
  4. Tingling and coldness in hands

Here are Emily’s symptoms:

  1. Touching the sources of pain RELIEVES the pain
  2. No changes or issues in gastrointestinal functions
  3. Exercise exasperates pains, causing extreme fatigue and increased pain during and after activity
  4. No tingling or coldness in hands (although sweaty hands happens on occasion)

Generally speaking, the most common problem people with fibromyalgia face is overall body pains, and that is the only thing we’ve recognized her having in common with this diagnosis. Her daily pain is acute and widespread. I worry about her day in and day out, but without highly involved medical attention she remains on the pill that seem to cause her more woes than anything else: Oxycodone.

Doctors have treated her like a junkie, yelled at her, belittled her, and even made her suicidal. One of the hardest parts of this for her has been finding support. There are times even I don’t like that she’s taking these pills. I’ve felt this way not due to what the pills are or what they can do, but because of how people view her when she takes them. Even her father remains unaware of what she takes, and by her own omission, knowing he would think less of her for it.

I am 27, she is 19, and we both came together in a world that hates ‘us’. Since our union we’ve found solace in being with each other and loving one another, while also facing demonizing remarks on a near weekly basis. We live in a small town that offers little more to us than her family (of whom only 1, her mother, openly supports us and understands what she is going through). Some days I want to die, and on others her willingness to live is gone; but on each of those days we find ourselves supporting each other to keep going. Without her… Without us… I hate to think about it.

 

~Tim

Be Kind, Always.

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Sorry It’s been a while since I posted, but things have been rather hectic lately. Christmas has passed, and now we are in the new year. I’ve been pretty honest with you all about my pain medicine, as It is a medicine that I take for the right reason. I have no reason to hide it, and I find it unfortunate that words like “oxy”, “Morphine”, or really anything other than Advil is a dirty word. When my doctor first started prescribing me my oxy, he informed me that he couldn’t do it long term, and if this was part of a longterm treatment plan, that I would have to find a different doctor. I understood, and he continued to fill my prescription for months. Right before Christmas, I called in to get a refill, and I was informed that I would have to find another doctor. My time with them was up, and suddenly, I was left with very little medicine and a lot of anxiety. I was calling doctor after doctor to try and find anyone that would take me in, and this was not an easy task. I’m still waiting for a doctor to come back from vacation so that I can see him.

This holiday season has been a big struggle for me. I’ve gone from taking four 10 mg a day, to two 5 mg tablets a day, and I’m barely functioning. At one point, crying in pain, My boyfriend took me to a new E.R. and the doctor I saw was so cruel to me, he was a line away from calling me a junkie. “You don’t come here for that, you are in charge of your meds. Find a new dealer within the next 48 hours. I don’t wanna see you here ever again, okay?” He yelled and then slammed the door before I could even get a word in. My boyfriend helped me out of the hospital sobbing my eyes out, still in pain, both body and mind.

This kind of treatment for people with chronic pain makes me sick. It’s inhumane to talk to someone like that or to judge someone based on their illness. We are not drug seekers, we aren’t junkies, we don’t enjoy this.

Right now I’m in the middle of just trying to hold on, stay calm, and find people that understand. Good hearted people, who want to come up with a longterm plan for me. In the mean time I’ll turn my heating pad on, take an anxitey pill, two Advil, and sip on some Jasmine green tea.

Stay strong, and don’t ever let anyone take away your sparkle.

XOXO

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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