I stabbed myself…

I never thought that I would stab myself! I never thought even though it was so very painful to do that it would give so much needed relief!

I have had migraines since I was 15, they definitely are not any fun! I named my migraine Julie (Previous blood post) and she does not like to leave me alone! Along with the horrific pain I get extreme sound & light sensitivity and very dizzy and nauseous! I was able to somewhat control Julie but as I got older she got more aggressive!

For years I was only prescribed Imitrex, which did not help! I had like 4 different meds/OTC meds and a heated eye mask to try to help get rid of Julie as soon as possible or get some sort of relief as once she shows up she stays for at least 4 days.

January through end of March are always the worst time as Julie is there with me EVERY SINGLE DAY!! I couldn’t live like this anymore and was fed up with the treatment of the migraines I was receiving. I finally convinced my pcp to try something else and actually got a medication that somewhat knocked the pain down, not to an “I can ignore it” level but it was a little better. Unfortunately we had to try this med for a bit before we could go to the insurance company to get better meds.

I wasn’t thrilled with going back to the neurologist I had dealt with before, but then thought it would be okay as we were dealing with migraines and those are more understandable. I was prescribed Emgality and it took over 2 months to get the insurance company to approve it!

I was not expecting anything miraculous and being very very scared of needles was not thrilled with the idea of stabbing myself every month, but that is how much I am over dealing with Julie.

I finally got the injection meds in the beginning of December and holy rusted metal Batman did that freaking hurt! I almost vomited it hurt that bad to inject the meds into my leg, but I insisted that I needed to do it myself. I was amazed with the results! It kick Julie in the face,, the pain was gone and I mean GONE! Oh sure the nausea, dizziness, light & sound sensitivity ramped up, but the level 12 pain disappeared. “POOF”

I was told it could take a few weeks to kick in and work but the pain was gone with in a day. The last week of December Julie showed up with the pain again, and sadly had to wait until January 7 to do another injection as they have to be 30 days apart. I got used to the very little to no pain for the month that I hated having it back and it has been very hard to wait for relief when you know how good it was!

At my most recent check up with the neurologist, she said it will only get better the more you take the medication. I am very impressed and optimistic about this medication. I have been searching for and trying so many different ways to get relief from Julie and am beyond thrilled to finally have some! After so many many years of dealing with this horrible pain it is still surprising at how you forget how bad it was when you have a couple weeks of relief.

I highly doubt that this will ever make me like needles, but I may get used to and okay with this injection!

I almost couldn’t stab myself again on January 7, the thought of all that pain and fear of needles almost got me to not do it! I made myself do it and it didn’t hurt nearly as bad as the first time, but it still hurt a lot!  I will probably encounter that every time but it is so worth it to lessen and/or end the pain.

Julie is still hanging around right now, but she is only causing and dull ache, enough to know she is there but not enough to be a huge problem. Dizziness and lightheadedness is still ramped up and I look forward to that lessening as well.

My thoughts are so far I am very impressed with Emgality and will continue to stab myself once a month.

If you suffer with migraines (which I truly hope that you don’t) how bad are they? What helps knock the pain down?

Nobody knows…

These four walls closing more everyday and I’m dying inside and nobody knows it but me…

The pain is real even if nobody knows and I’m crying inside and nobody knows it but me…

I’m missing me and nobody knows it but me…

Nobody knows the pain that I feel!

The nights are long and the days are so sad, and nobody knows it but me…

Nobody will ever know the true feelings inside my head. They will never know the pain and torture living in my head. I wish I didn’t know about it either. Living with an invisible chronic illness doesn’t help things at all. It is a very hard life and I don’t wish it on anyone!

You try and get out of your head, but it is just so very very hard to do! Creating and craftiness helps distract me from it all. Listening to books and music is also very helpful, but at some point it all catches up with you and knocks you down.

We shouldn’t be made to feel bad about all of this. I say embrace it, let it out, scream, cry, break things if needed! Visiting these feelings and letting them out can be very good for you. It is okay to not be okay, let yourself deal with it. It is okay to visit and deal with it, just don’t unpack and live there. You need to find a way to deal with it all, find something that helps make you happy.

Never apologize for feeling hurt and sad, it is all part of being human. Never apologize for being you, for being real, it’s like apologizing for being human and that isn’t cool or necessary!

People hate for no reason and it’s becoming too easy and normal to do! I say let’s love for no reason! Less hate & more love!

You are beautiful, worth it, amazing and someone is happy just knowing that you exist! When you’re out doing life things, take the time to smile, wave or even say hi to someone, you never know it could just be the reason that they keep going in this life we live!

Nobody knows the horror that is in our heads, but maybe, just maybe it is time that people learn what is like, then possibly we could all learn to deal with it and help each other out and be a little bit happier!

Why Susan?!?

It’s been a while since I wrote to y’all and with my 9 year chronic illness anniversary just passing (Feb 16, 2011) I want to introduce you to my friend Susan!

I have a friend named Susan and she isn’t like any normal friend because nobody can see her! No she is not my imaginary friend really, I can feel her presence more than I can see her. Actually I never actually see her, but I do know what she looks like.

Now before you write me off as some crazy loon who’s making things up, let me explain who Susan is and why she’s always hanging around.

Nine years ago I was injured at work and from that injury I was blessed and diagnosed with a chronic illness. I went downhill very fast after that injury as I was so used to being healthy and independent. I never asked for help and was always helping and doing things for others because that’s what made me happy! Feb 16, 2011 that all changed and I couldn’t handle it. I was sent to a pain program to try and help with all the excruciating pain that I was now forced to deal with everyday. Part of that program was talking to a psychiatrist and I honestly didn’t like that idea, but I had to do it. Turns out that she was very helpful and brought me back from the dark hole I was now living in.

One day she told me to imagine my pain. What did my pain look like? It only took a few seconds to imagine this and I then described it and drew it out on paper. What I saw was this little girl wearing a purple dress. Weird thing is she didn’t have any feet. No, she wasn’t a ghost, but she did just float around my body. As I described this girl I said that if I really listened I could hear her laughing. I didn’t like her laugh and I still don’t. She will just float around my body causing me pain and laughing about it. I don’t really like Susan, heck I don’t think anyone could like her.

As part of my treatment, my psychiatrist taught my some breathing techniques. What she would have me do is sit back, close my eyes, and focus only on my breathing. I would have to count to 3 as I breathe in and count to 3 as I breathe out, making my breathing even. The point to this was to be able to relax, and as I relaxed my body went more numb and I could just drift away from all the pain and trouble this horrid illness brought to me!

She next told me to imagine My pain leaving my body. The first thing that came to my mind was the ending of Beauty and the beast, where the beast turns back to a man. As I sat there, eyes closed and relaxed I pictured beams of light shining from my toes and fingers and Susan trying very hard not to leave me. But she eventually was gone, although it was only temporarily. Susan never stays gone, she always comes back and sadly I will never be able to get rid of her.

After all these years I have gotten used to Susan hanging around and that in itself is sad! I don’t wish a friend like Susan on anyone. Some days I can manage the pain and not notice too much that she is there. Although more days than not she is very noticeable and angry and causes way too much pain!

Even after 9 years I still have hope that my doctors and I will find a way to manage her more and make it so she’s not so angry and mean. I still hope for the day that I can say “Susan who?”

Have you ever pictured your pain and given it a form of some sort? Did you give you pain a name?

I do truly hope that you don’t have a monster friend like Susan! If you do, have you found a way to manage it, and keep it from acting up!