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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Trying to hold it together; Keep my love as light as a feather

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So lately, I’ve been spending a lot of time alone in our apartment. My puppies and I chill out in the bedroom while I watch a copious amount of youtube and drink way too much jasmine green tea. It’s been making me think about when I used to live with my mom and do this same thing, but with her in the other room. I used to spend most of my time doing this, and then I would ride my bike, walk or run outside a lot. Sometimes I would hang out with my sister as well.

Tim recently got a job, and he has to go an hour away for a short amount of time to train for it. So that means he leaves at 7/8 am, and comes back at 7pm. Since I’m a Fibromalgic person, I generally don’t sleep until 1 or 2 am, and I don’t wake up until 9 or 10 am. Tim goes to sleep around 10/11 pm. This means in an average day, I see him for 3 hours. I guess I’m not used to it because for a while there he wasn’t working and he was around a lot..but it’s all been very difficult. I want him to work, no doubt about that, and I’m so proud that he is working. I just kind of feel like a fish that’s been put into a new environment, with cold water very suddenly. It doesn’t help that I’ve been in a lot of pain, and that makes it hard for me to do much of anything. Plus, the meds I take make me drowsy, so most of the time I’m stuck on the computer or my phone.

I guess I’ve been put in a frustrating position, and that is a waiting one.  I would be doing so much better if his hours were even 8, but this whole 10 hour thing is too much. I find myself dealing with Flare ups completely alone, and knowing that makes it even worse. I will just miss him and want him to hold me. I must keep reminding myself that this is temporary, but it’s just hard to deal with it right now. For now I will will take my meds, sip my tea, and watch something lighthearted.

Dreams of silent sheep

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Although I generally don’t like talking about my dreams, I feel like looking back on them sometimes. Dreams are the writing on the walls of the brain spoken back to us. We hear them, we see them, and we try to interpret them. I genuinely believe that no interpretation of a dream is wrong, so long as that interpretation isn’t aiming to be wrong. But what are the dreams I have? The dreams of a person with no foresight or interest in knowing the future; what are my dreams?

My dreams come at me like a heavy flood, in which I drown in them. I gasp for air as the images of my past, strangely familiar faces, and scenarios I’ve never experienced was over me. My latest dreams included: Emily’s death, a tangible string connecting all parts of my life, my abstract home with doors that lock to open, and a crisis of the existential nature. My dreams are subtle as a slap to the face. I often wake up momentarily distraught or sad. When I was really young I remember waking up happy. What ever happened to that? Does growing up take that away from us?

I’ve dreamt about pleasures that were within grasp, but my mind willed to not to achieve them. All too often I dream about loss. Loss within a dream is real, because when I wake up I know that loss is still there. My body is a cage, and my mind is the sight between the bars.

This stream of consciousness is a nightly occurrence, and, although it sounds hellish, I can’t wait to get back to sleep some nights.

~Tim

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♡

Taking you through a loved one’s depressive episode

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Tim has Bipolar Disorder, which leads him to go into bouts of depression. Even though he is medicated, there are still manic and depressive episodes that happen. Today was Halloween. I dressed up as a Unicorn and he dressed up as a cool dark Skeleton/death/ unique all black costume. We trick or treated a bit before my Fibro kicked in and told me to go back home. It wasn’t a big deal, we still had fun, and spend the rest of the night relaxing and watching one of Tim’s Favorite shows. Mug brownies, candy, chips, Vegan Mac and Cheese; I enjoyed myself! In my eyes, it was a very good day.

However when we went to lay down, something was off about my Puffin. He seemed a little distant and standoffish. I would start talking about positive dreams I had for our future home, and he kept shutting them down, not even jokingly. I would ask him to come up with other fun ideas and he just wasn’t up for joining in. I figured maybe he wasn’t in the mood for chatting right away so I checked my phone for a bit, and then scrolled over to vine for a bit. Usually vine breaks the ice and can loosen Tim up a bit. I heard him laughing at some of the clips, so soon I lightly pounced wanting to cuddle with my Puffin. He was still acting odd, and I was starting to think i had done something wrong. He wasn’t smiling and when i asked him what was wrong me moodily shrugged. This is where I started biting my lip with anxiety. I had to have done something wrong right?

We just were lying there for what felt like forever, looking at each other occasionally. I asked him if there was something I could do, and he seemed slightly annoyed at this concept. “What do you mean?” he would say, “I..um..well I wanted to just talk to you about ya know, light stuff. ” I responded. He shot me a look as if I should have already known what he was about to say, “I have nothing to say.” The monotone in his voice worried me, because didn’t know where he was mentally right then. Again, lay still for a while, he closed his eyes, while mine where wide open searching for something to say. Finally, with teary eyes I kissed his lips and my love opened his eyes “I’m sorry you are sad, and I’m sorry If I did anything to cause i-” before I could even finish, Tim stopped me, “No, No, Honey, you did nothing wrong..” He grabbed my shaking jaw lightly in his hands ,”..Don’t ever think that, you are perfect my darling. I love you so much.” I burst out in the tears I had been holding and tried to mumble things through tears like “..B-but I wish I could help you..I wish there was something I can do.” He shushed and hushed me like a caring lover should and quickly calmed me. “Sweety, I just get like this somethings you know? There’s nothing you did, don’t ever think that.” I nodded and kissed him multiple times. I asked him if he needed sleep (Which he said yes) and I said I would hang out on my phone with him until he feel asleep  I love my Puffin with all of my heart, and I make it my mission to be as helpful as possible with his own issues. Sometimes Tim feels sad and he has no idea why. That’s okay, it’s going to happen. As time go on I will learn how to deal with it even better, but soon will make a full list of tips when your Lover is Bipolar..If anyone’s interested 😉

Soft Hugs!

XOXO

♡Emily♡