That Feeling

Lately I’ve been having that feeling.

The one where you just want to stop taking all your medications and just suffer.

To punish your own body for punishing you for so long.

Lately I’ve been giving that feeling serious thought. Because of side effects.

Side effects that my doctor has “never heard of before” and that “shouldn’t be happening because of this medication”. Nevertheless, I’m experiencing them. And every time I stop the medication, these side effects go away. It’s at the point where I would rather have high blood pressure than suffer through this side effect.

I do want to lessen the amount of medication I take daily. Although taking medication makes me feel like my conditions are more “real” and it’s not just all in my head as I’ve been told for years.

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!

NOIR N81 Plum 20% UV Sheild Sunglasses

I’ve had these for a little bit now, maybe 3 months?

I like them. They block out more light than any drugstore sunglasses. They have a purple filter that helps me deal with some contrast issues as well. They make my visual snow just a tiny bit more manageable I think. Or maybe because I can actually open my eyes outside with them, I think I can see more clearly.

I do think that I will have to get something that blocks out even more light in the future. I am still getting major eye and headache pain from sunlight or highly contrasted things.

These cost me about $50 on amazon. I am not a fan of their style.. it makes me feel like my eyes look droopy, but I don’t even mind if they help me out!

These are just one of the many tools I have to help me cope. 🙂

Here are some links if you want to check them out for yourself:

http://www.noir-medical.com/filters/81.html

http://www.amazon.com/NoIR-N81-UV-Shield-Sunglasses/dp/B00EBCU67K?ie=UTF8&psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s00