Wednesday, September 20, 2017

Things have calmed down a lot since my last update. My body has gotten used to the medication so all of those horrible symptoms I’ve mentioned have kind of dissipated. Now that the side effects aren’t so awful it has really helped decrease the level of my pain. I’d say it’s about 60% better. I no longer have those horrible, crippling lightning bolt strikes through my brain that I’ve had for years, and that in itself is something I am incredibly grateful for. Those were so terrible, I don’t even think I can describe them fully. They were ruining my life and to have them be gone is incredible. I get occasional “kicks” but I’ll take those instead of bolts of electricity any day.

I still have pain, though. Some days are worse than others and it’s a different kind of pain. We’re just talking about the Trigeminal Neuralgia today. All of my other pain has stayed the same. All of my other symptoms are the exact same so we’re just talking about that damn nerve in my head. How do I describe the pain? I guess it’s kind of an aching, nagging, constant pain covering the entire right side of my face and head. Again, it’s better than what I was dealing with before so I’ll take it. I’ve lived with pain for a very long time and I can handle this.

I've had to change a lot of things, though. I can't eat anything chewy or crunchy. I can't touch my face. I can't be out in wind so I have to wear hats and beanies. I think there's a lot more to it than that but I have to be really careful.

Oh! I have really good news! I have an appointment to establish care with my new Primary doctor on the 5th! I am so excited! I’ve been waiting, as you know, and I feel like this is a step in the right direction. I hope this appointment is just the first step in many to get me the right diagnosis. It’s been a long time coming and while I do feel a bit anxious about what awaits me, I’m also feeling really hopeful.

It’s been years of wrong diagnoses and wrong medications and I hope she can figure this out and get me on the right plan of action. What if she does and then I start feeling better? I’ve been sick for so long that I can’t even imagine feeling well. I’m 30 now, 22 when I got sick, so I pretty much missed out on my 20s. What if I get to truly experience my 30s? I’m getting really, really ahead of myself here but it’s just such an exciting idea. There’s potential there and potential isn’t something that I feel like I’ve had in a very long time.
Although, if I’m right about what I have (and let’s be real, I probably am because I know my body better than any doctor ever could) I don’t have a lot of time before my body stops working. Everybody and every body are different, and I don't even have any definitive answers. I’ll try my best to be patient and see what happens.

Another thing I want to mention is how calm I have been lately. I don’t know if this anti-seizure medication I’m on has some sort of benzodiazepine component to it but my anxiety has been so much better lately. I mean, it’s still there but I’ve seen a huge improvement in the past couple of weeks.

I don’t think I have anything else to add right now. Well, maybe that it’s cold and being cold is so hard on my body. My pain gets a lot worse when it’s cold. Maybe not worse, I guess it's just different. I'm so temperature intolerant. And of course my Raynaud’s is at its worst in the colder months so my fingers and toes are just constantly blue but lots of baths and warm clothes helps. Anyway, I guess that’s it for now.


  1. have missed/am missing out on my twenties......
    ".There’s potential there and potential isn’t something that I feel like I’ve had in a very long time...." - really liked your outlook towards life & will try and adopt it

    1. I've found that positivity makes a huge difference. We can't change things but we can change the way we see things and how we react to them.

  2. You really do have a wonderful attitude and I admire your strength and positivity. I am rooting for you to get the help you need to really live your life.