Still Months Away from a Neurologist

When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.

This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!

Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.

I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.

I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:

  • Botox?! is it worth/too expensive!!
  • Nerve Blocks work but are too temporary
  • Can she get me into the pain clinic for the nerve burning?
  • Stimulator trial?
  • plz just tell me to hang in there

Linda White, please don’t fail me now!

Cardiac Event Monitor

I got my results through email today. And all I can say for now is

fuuuuuuuuccckk I really did not want heart problems. I am pissed and disappointed at my body. I don’t need this! ANY of this.

Ok, lets calm down… Look at the facts. screen-shot-2016-12-15-at-11-19-06-am

I’m sorry for the shitty quality of this, but JH puts their images in some BS Java application that won’t let me save to PDF. I’m going to try to print a copy at work later.

I was monitored for 21 days which came out to 491.28 hours.

Out of that time, my average heart rate was 98BPM. Tachycardia present for 40% of the time.

Am I dying?! Probably not. But I am WORRIED. What is the treatment for this?? Am I going to have trouble later on in life? Will I eventually die of this even if I am an old lady? I don’t know if I can wait until march for my follow up appointment.

I think I’ve worked myself up into a tachy episode reading these results lmao. Maybe I will try to stretch my back out and calm down.

Reminder to myself: It’s not the end of the world. You will survive this, just like everything else. Just BREATHE.

The Migraine Cure

I have a problem. It’s with all these bullshit blog posts and articles out there offering the “cure” for migraines and other conditions, all you have to do is buy their ebook! For example, this one that was sent to me by a friend:

Why Keytones Kill Migraines

And I sighed, said to myself “not again” and started to read the article. I don’t even know why I wasted my time because I knew how this was going to end. I got into an argument with the friend who sent me this, and now I feel really bad. I feel guilty for expressing exactly how I felt. And maybe I was a little harsh and a bit too sarcastic, but I am tired.

I’m so tired of hearing all about diet & exercise & fucking yoga. I promise you, I’ve heard it all and I’ve tried it all. Tell me what a diet is going to do for my neurological disease? I KNOW there’s some science to it. I get it and I understand. And I get that they were just trying to help, I really do! But WHEN did I ask for help??

Damn near every single person who finds out about my disease tells me about how they think they know the cure. And how I need to try this one thing because their coworker’s brother’s son tried it and it worked for him. I know my body and I know my disease. And I promise you, some dipshit on the internet selling a “cure” for my incurable disease isn’t going to help me.

Tired

I am TIRED of being tired.

I feel just absolutely exhausted.

I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.

I am going to sleep. And sleep. And when I wake up I hope to be rested!

30 Days of Heart Monitor

This morning I finally set up my heart monitor. I received it Saturday but I put it off until now. I was enjoying my last little bits of freedom I guess. img_5293

I’m stuck with this thing for 30 days. I am scared of these little sticky things getting caught on clothes or ruining my skin underneath it.

Related to this, I have a blood pressure medication now. Because I have high blood pressure. And probably have since last year around this time when I saw that really shitty cardiologist. Thanks for nothing, guy! My new one is here at Johns Hopkins this time. And believes me!

Hopefully these 30 days will pass by quickly and I won’t have too much trouble with this thing. And also that there’s nothing wrong with my heart! The other night I’ve decided I want to live long enough to go to space. I want to be a space grandma. So my heart better act right so I can make this dream come true.

Hospital Glam October & November

Some hospital glam photos because I’ve been feeling really shit about my health right now.

First photos are from my more recent visit to the cardiologist (FUN STUFF) and the bottom ones are when I had electrodes in my eyes! Remind me to email my doctor to find out the results from those…

I think I’ve been feeling shit about a lot of things lately. Being let down by friends, never having enough money, and my health. I need an outlet. And some friends to talk to.

 

Video Games

I love playing video games.

Or actually, I used to.

It has become just one of those things that I cannot do as easily with my illness. In the past few years, I haven’t been able to play as much. It’s actually physically painful for me to play them now. The flashing lights and sudden transitions from dark to light can cause a sharp twinge of pain directly behind my eyes. It’s really similar to the pain I get when stepping out into the sunlight without closing my eyes.

And then there’s the other type of pain I feel. What do you call it, emotional pain? Where I have to watch myself play this game, and be horrible at it. I cannot aim or shoot. I waste ammunition I am too slow at reading the text during cutscenes or tutorials to even understand how to play. The motion looks blurry and laggy to me.

And it’s painful because I used to be so good at this! I would sit for hours, completely immersed in the story. Video games were just one of the ways I could escape for a little while. Now I can’t even get into the story enough. I’m always frustrated that I cannot see, aim, or follow directions to save my life (or in this case, the life of my character lmao)!

I’m having trouble concentrating on even writing all this and hoping it makes sense. I am just really frustrated. But I’m still trying!

Maintaining

I have just been sort of maintaining for the past couple weeks. I’ve had days that are horribly intolerable and I take a max dose of Midrin, and then I’ve had days where I’m sort of ok as long as I stretch my back + shoulders out as soon as I wake up.

I’m having a lot of mixed feelings… How does a person separate their lives and into what sections? I want a professional website somewhere, plus a space where I can blog about recent projects & creativity. But… Do I keep that separate from my personal blog? And what about my health blog (this one)?? How inappropriate would it be to link them all together? If someone were looking at my blog and thinking about hiring me for photography/whatever else, would seeing my health blog or personal posts deter them?

I have no idea, whats the correct way to do this? I want my work to be seen, but at the same time I am afraid of people looking at it. I’m sort of comforted by knowing I can post whatever I want and almost no one will view it.

I’m thinking about merging this blog with a photography blog I have recently started (and update far less frequently), since most of my creative projects are centered around health.

A Psychiatrist Came Through For Me

Friday’s withdraws were BAD. In the last hour of work, it got so much worse. And I was hidden underneath my desk, thinking how awful it would be if I ruined everyones day and went to the hospital.

When I finally got home, I broke down and ended up in the bathtub with all the lights out. I sort of consider it my little comfort place. I hadn’t been in the bath for more than one minute when my phone rings. It’s the psychiatrist I saw a few weeks ago with some info about pain specialists and biofeedback. And while I’ve got him on the phone, I tell him about this horrible withdraw situation I am in. He writes me a one month prescription and I pick it up from CVS. It was the simplest fix, and here I was thinking I was going to end up in the hospital. Sometimes it just amazes me how things like that can fall into place.

In the meantime, I’m only taking half the Cymbalta dose until I can get a new neurologist. I swear there’s nothing scarier than a sudden detox from a medication!

Suddenly Stopping Cymbalta

I am suddenly stopping Cymbalta, and it is not by choice. I went to the pharmacy to pick up my refill last night, but I left empty handed because my insurance won’t pay for it until the 12th. Somehow I don’t understand. She was telling me the instructions on the bottle stated I should be taking one pill a day. But I’ve always been taking 2/day since I last saw my neurologist. How did I not run out of pills in August then?

I have no idea. But from last night (Sept 6th) until the 12th I will have no Cymbalta to take. I have read all about this withdraw, including a lovely thing called Cymbalta Discontinuation Syndrome. I made it through an extremely difficult Effexor withdraw, but that was with tapering down. In this case, I’m going from the highest dose of Cymbalta, to zero within one day.

I am very conflicted. I like the idea of having to take a medication everyday to control my symptoms and prevent pain. But I have a fear of relying on medication every day as well. It comes from the days when my endometriosis was poorly controlled and I was taking birth control pills like candy. I would double up on pills (based on my doctors recommendation) for a short amount of time to try and prevent all the pain and blood. I would double up so much, that when it came time to get a refill from the pharmacy, it was too soon, and the insurance wouldn’t cover it. And I would cry when they denied me because I didn’t know what I was going to do. Letting the period come meant extreme pain, not eating, not sleeping, and hospital trips where I wasn’t even given anything for the pain. Those pills were the only thing stopping all that from happening, and I wasn’t able to get them when I needed them. And that sounds all too familiar right now. At least with birth control pills, there is no withdrawal symptoms. I am wishing future me luck with the next 6 days.

When I finally do get my Cymbalta back, I think I am going to half my dose anyway. Having no neurologist at the moment makes me free to make shitty decisions.