UGH I just have been horrible about updating this blog. I think I have mostly been using tumblr to post little complaining sentences lol.
Recently I have had a pulsed radiofrequency ablation procedure on my occipital nerves. I’m not sure if it has worked yet. It might have sent all my pain to the front of my head now? I know I have been using more Midrin than usual (probably because my sleep and work schedule has been very messed up lately though) which probably isn’t good. I’ve been getting more pain in the front of my head now, as opposed to the back/sides. I do know that I need to start physical therapy very soon because my neck and back are getting worse. I cannot put this off any longer.
It’s so hard for me to sit down and write something, but I am going to try my best to continue to do it. I always was a writer and I sort of miss it.
I feel as though I haven’t been updating this as much as I should, probably because I am TIRED. Sleepy girl for life.
This past Monday (1 week ago now) Jan 23rd, I saw my neuro-opthamologist for a follow up. Something about a test result with my retina being slightly abnormal, but I have a follow up with a retina specialist as soon as I email him and find out who he wants me to see. But the most exciting thing is, I finally got a prescription for Lamictal! This mysterious drug that I have been hearing about every time that I have went to see him for about a year now.
It’s an anti-seizure medication but it has shown to help with migraine and visual snow. It’s one where you will slowly have to increase your dose up to the correct amount to see any relief. I’ve only been taking it a week so far, and I am just EXHAUSTED. Never been so sleepy for so long in my life. I decided to caffeinate myself today, which was probably a bad idea, but I have things to do!
I am also very very paranoid of one of the rare side effects, Steven Johnsons syndrome (SJS) for no reason other than it makes your skin fall off and I really don’t want to deal with that.
Let’s see how my lamictal journey goes.
For the first time since forever, I didn’t make a New Years resolution. The past two years my resolutions have been somewhere along the lines of “be healthier” and “manage my illness more”, but this year I didn’t think it would be fair to hold myself accountable for such an impossible goal.
It is not my fault that I am sick. It is not my fault that it is getting worse. And it is definitely not my fault that no treatments are working.
This year my resolution is:
What does that mean? I’m probably not even 100% sure at this point. I am hoping that this is a resolution I can remember throughout the year and that it is something that’s meaning will change depending on how life goes this year.
Right now, to me it means to keep going; to not get discouraged and not give up in seeking an appropriate treatment for my pain. To keep working even though I may be sacrificing my health for it. Rest, but do not give up.
Here’s to another year of adventures!
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!
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.
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.
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.
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!
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.
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.
Some hospital glam photos because I’ve been feeling really shit about my health right now.
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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.
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!