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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Marijuana Laws And The People Who Suffer

I’ve been quiet a lot again… Emily’s going to get on Methadone soon and she’s worried that it won’t work… we’re both worried.

Something I’ve wanted to talk about for a while is marijuana. For some people, it’s a touchy subject, but for me, for us, it’s important. Marijuana should be legal in Pennsylvania and open to people with chronic pain, depression, bipolar disorder, anxiety, and so on. I made this video on our youtube channel, ‘calmly’ lashing out at where we live and our legislators for remaining aloof on the issue.

For those of you who don’t know: Pennsylvania allows medical marijuana, but for a very narrow group. I want to take her to the marijuana doctor to see if they’ll accept her, but it’s $200, and we’re struggling. Please watch, and thank you for caring/tolerating me.

~Tim

P.S. I thought the title was funny, but, I know, it makes no sense… and I curse A LOT in the video… sorry.

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

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 }

Puppy Love

Sorry for the long pause, for anyone that’s been following our blog. I haven’t been doing the best with my chronic pain, and I wasn’t in the writing mood for a little while. As a musician, sometimes I discipline myself and think that if I’m not writing songs, I shouldn’t be writing at all..and this is silly in retrospect. Hopefully I’ll continue to write here, and maybe post a new video on youtube.

I’m not sure if you guys know this about me, but I am Vegan. I care passionately about animals, so I do not consume animal products. That’s going to be a whole other post, but for now I want to talk about my puppies!

The Morkie on the left is Pluto, and the Maltese on the right is Tinkerbell

Screen Shot 2016-02-06 at 9.05.28 PM

I guess you can say that I’m kind of an unconventional “Dog Owner”..I don’t crate my dogs, they mainly go to the bathroom inside on dog pads, we get the best quality dog food we can afford, and they sleep on the bed with us. When it’s cold outside I put sweaters on my dogs because they are small and get cold easily. I give them what some consider “People Food” almost every time I prepare food, or snack. All of the things I mentioned,  at some point get negative comments about.

That is ironic to me, because I do all those things because I treat my pets like equals. I don’t feel like I am on top of the food chain, or that I have some sort of special right to eating fresh bananas, or carrots, or even a pasta noodle here and there. My dogs deal with  separation anxiety, and because I know what that feels like, I don’t like the idea of locking them in a tiny cage for hours. Instead, there is a special spot underneath the couch with blankets and pillows for when the dogs feel the need to burrow. Have I lost a couple lipsticks or letters because of their freedom? Of course, but those things aren’t as important as my dogs.

I grew up watching a neighbor a few houses down leave their dog outside for hours and hours, just to bark and be unhappy. Just because you can’t understand what they are saying, doesn’t mean that you should treat them as something below you. When my puppies  are curled up by my side during a bad pain spell, I know the comfort and happiness is mutual; and I think that is really important.

 

Soft Hugs,

XOXO

Emily

 

 

 

 

 

 

 

 

 

Sometimes I Want to Curl Up into a Ball and Eat Double A Batteries

Jonas

So winter storm Jonas has struck and, suffice it to say, the town pretty much closed yesterday. I did manage to go to a grocery store before it closed and get a few ingredients in order to make vegan dumpling soup. I don’t recall if I ever talked about this, but I used to be on YouTube under the title “The Bipolar Chef”. I left once I hit about 1,000 followers, because I had a bipolar episode and decided to delete the channel, and I can think of a no more fitting way for me to have ended that. Honestly, I regret deleting that channel. Emily used to watch it when I was out to laugh and make her feel like I was still home.

Now we have this blog and connected YouTube channel, where I might start being more active in. I love cooking, and I’m really damn good at it, but I think vlogging is more fitting for what I want to do. The cooking was really a distraction for viewers, and an excuse for me to talk about my life. Well, I do miss having my special recipes and sharing them, so I’m here to share one more recipe (and maybe there will be more to come if people like it).

 

~Tim

P.S. The title was random, one of our friends said it and it made me laugh.

 

Vegan Teriyaki Dumpling Miso Soup:

Dumpling Skins:

  • 1 1/2 Cups All Purpose Flour
  • 1/2 Cup *Hot* Water (boiling works best)
  • 1/4 Cup Cold Water
  • 1 Tbsp Olive Oil

Dumpling Stuffing:

  • 1/2 Head Cabbage (chopped very fine)
  • 4 Carrots (peeled and finely chopped)
  • Cooked teriyaki tofu (cut into small cubes)
  • Teriyaki sauce of choice (I prefer anything with ginger and sesame)

Soup:

  • 32 oz container of vegetable broth
  • 32 oz warm water
  • 2 oz Dry packet Miso Base (or liquid miso paste to taste (2-3 Tbls))

Extra bits:

  • small bowl water
  • floured surface

 

Directions:

  1. Put all soup ingredients into a large cooking pot and put onto medium heat. Mix until miso is blended, then allow to reach a light boil while you work on the dumplings.
  2. Put the flour in a large bowl and, using a wooden spoon or silicon spatula, mix in hot water until mixture is blended and flaky.
  3. Add remaining cold water and olive oil to mixture and continue stirring until it forms into a stretchy, slightly sticky ball.
  4. Set aside 3/4 cup of chopped cabbage to throw into soup.
  5. Mix all remaining stuffing ingredients in a bowl, stirring to make sure teriyaki is evenly coating all pieces
  6. Place the dumpling dough on a floured surface and rip off small, roughly tablespoon sized pieces, and knead in your floured hands until they are round and very flat.
  7. Put a hefty spoon full of stuffing into the center of the dumpling.
  8. Dip your fingers into the small bowl of water and dab water around edges of flattened dumpling dough.
  9. Fold the dough over the stuffing until all ended and pressed and stuck together. Fold into the center again if you want, of simply use a fork around the edges to give it that unique look.
  10. Once all dumplings are filled and folded and the soup is lightly boiling, put in 3/4 cup cabbage into soup, then, one at a time, drop the dumplings in.
  11. Cover and cook for 10-12 minutes.

The final result will look something like this:

dumplings

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

Over-Treated, Under-Diagnosed, and Completely Alone

maze

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