I'm so tired...

I don't know why I'm even writing this. I'm so terribly tired. Maybe venting about it will help me sleep. In all seriousness, I haven't been sleeping well. It seems like the only time I do sleep is when it's drug induced. Mmm muscle relaxers... They may "help me" sleep, but it's not a good, refreshing slumber. For the past week, I've probably slept an average of 1 to 3 hours a night. I don't know why!! The pain hasn't been terrible. (knocking on wood) The pain levels are nothing I haven't dealt with before. I just honestly can't drift off. I wake up constantly, either hot or my head is doing its normal pain dance. My husband & I sleep with a fan on & the windows open. So it's not actually "hot" in the boudoir. The worst part is I'm keeping the Hubby up too. My tossing & turning, tosses him too! I feel so guilty. If I knew why I'm an insomniac, I wouldn't feel this much regret!!

I'm not going to turn to medications either. I'm sick of taking them & who knows if it will even help?  Also, I only drink 2 cups of coffee in the morning. I don't drink anything else all day w/ caffeine. I haven't changed my diet. I've ruled everything else out. It's almost like my "sleep switch" is stuck in the off position. Something inside me is stopping me from meeting the Sandman on my pillow each night.

I just don't get it. Im TIRED darn it!!  Physically my body is giving up, I'm exhausted. Literally seconds away from being clinically insane. I'm delirious. I laugh at the stupidest things... I'm just torn. I hope things turn around, or I'm going to... I don't even know. Go insane?! Lol!

Here's to some sweet dreams

K8 =]

Double Rainbow!

"Everyone wants to be happy and nobody wants to feel pain, but you can’t make rainbows without any rain." ~Unknown

Yesterday was a glorious day here in my part of the world. It was 77 degrees out! Unheard of for March. My Husband & I got a lot done outside. We cleaned up the yard of all the sticks, leaves, and dog waste. Lol!! (I helped as much as I could. Hubby did most of the work) While we were enjoying the miraculous weather, a storm rolled in. I ran outside to catch this beautiful sight, getting soaked in the process. But it was so worth it!

K8 =]

Holy Crap On A Cracker!!! What a Day!!

Well, today has been a VERY good day!! First of all I feel like crap. The pain won't subside, & leave me alone. (that's nothing new!!) I got to see pictures of my friends baby, due in June. This is her 2nd child, a baby boy in 3D!! Then (this one made me so very happy) I see a link on Facebook announcing that us Migraine & Cluster Headache Demon Fighters have a RIBBON!! IT'S PURPLE!!! Funny, my phone case is purple, my bracelet is purple, I have purple purses... OK, my favorite color is purple!! (That's why I got so excited!) OK, OK getting off track... Then I see on Facebook from a good friend, that my blog has been added to the Headache Disorder Blog Network!! I'm so appreciative, honored, amazed. The list goes on & on.

The only reason I started this blog was for me & to find others like me. It's a small space in this world, where my feelings can be released. I can vent, cry, and be frustrated, and no one will judge me. This is just my place, for therapy, to make myself feel better! I never would've advertised this blog if it wasn't for Twitter. I've never physically met another human with my condition. However, through social networking I have "met" some really honest, empathetic, friendly, people who have become my second family. Plus, they all know what I go through, because most of them have the same conditions I do! No matter if I'm down, or happy as a clam, I know that a few pushes of a button I have someone there who completely understands what I go through! (Besides my husband of course) Thanks to all of my dear friends who believe, understand, love, and will always lend a helping hand!!

Well, I said what I needed to. Not very well, I know I'm not the best at getting feelings out into the open, but I think I got my point across! I want you to know I welcome everyone to my world & love opinions. So please leave a comment!! Also, due to my condition, I'm not on here all the time. So please don't expect to hear from me a lot. I post about once a week or 2 weeks. Thank you all & I am looking forward (now more so) to sharing my small world with you! =]

K8

Poem...

"Invisible Disease "

See her pain
Feel her sorrow
She wants no gain
Just sees tomorrow

Consistently one sided
Invisible disease
Why was this decided
Nothing done with ease

Smiling face
Covers the fire
Drugs can't chase
Painless desire

My husband wrote his poem today. There's no additional  words needed. I cried, knowing how deeply he understands. It takes my breath away every time I read it. <3

Validation

I hurt so bad inside,
I wish you could see the world through my eyes.
Each day is the same,
I just wanna laugh again...

This song lyric has stuck with me throughout my whole ordeal. There's nothing more that I want & need more than validation, acceptance & feeling "normal". I do say "normal" a lot, but you have to understand I'm far from normal. I do not lead a "normal" life, I don't have a job, or kids. (Dog's count right?!)  I can't make plans without changing them due to my pain levels. If it's a holiday, well pardon my french, I'm screwed. Put on the "happy/strong face" & deal with it. Out of the week, 5 days I do not get dressed. Pj's have become my wardrobe, overtaking my dresser. It's pretty sad when I have more PJ's than regular clothes. My life unfolds while I take refuge on the couch or bed. The only thing I look forward to during the day is, "When will it (the pain) stop", "I wish I could do this" (insert activity here), and sadly the negative thoughts that come with depression. WHY am I not good enough? WHAT did I do to deserve this?

I'd just love a "normal" life that would entail a full time job, a functional social life, basically all the things one could do with a pain free existence! 

All I want out of life right this now is to feel a sense of validation. A feeling that I matter, that I was put here on this Earth for a reason. A reason that doesn't include suffering...  That doesn't include the small feelings I get when I finish a crochet project. I'm talking like long term fulfillment!  Something you would get from volunteer work. I would absolutely love to do so, but I never will know how I'll feel. This sense of worthlessness has NEVER gone away. It's something I've always battled. Everyday feels worthless. You get a good day & feel productive, but the self fulfillment never stays around. It leaves as soon as you have a week of bad days. Which is "normal" for me!! Ughhh, I tell you it's so frustrating!!

Is Empathy Dead?

Em·pa·thy

- noun 1. identification with the feelings of another

I don't know about many other patients with a chronic illness, but isn't empathy what we all need? Whether we're striving for it from someone else, or understanding anothers condition. I sense a lack of empathy in my life. When I tell someone I have headaches, their mind goes right to that cliche.  You know the one I'm talking about... The slight annoying pain you get from a hangover, or from stress. Not the debilitating pain I feel from a day to day basis. I'm not trying to be mean when I say this, but I wish I had another word for my condition.  When someone says "cancer", you know right away what that means. What this person goes through. The empathy is right there, the understanding comes right out. Saying "headache" doesn't bring that type of response. Neither does "migraine".  It may for some people, but in my life, w/ my surrounding people it doesn't!

I just want people to understand me. Accept me for who I am. Not think of me as some kind of outcast. I feel as if I should be thrown away on an island, never to be thought of again. Others treat me with no dignity, like I'm not a human. I'm some sort of animal with a contagious disease. Example, no one hardly asks how I'm doing. I don't know if it's due to the fact they don't care, or if they don't know HOW to ask. Seriously, how hard is it to ask 3 little words?! I know I'm being very bitter, but I'm sick of being sick!! I'm disgusted with others. Why am I not good enough to be asked, "What's up?".

I guess what I'm trying to get at, is everyone has issues. Everyone is fighting something. I just wish people wouldn't be so quick to judge one another. Don't jump to conclusions. If you don't understand something, don't judge it. Ask & I will gladly pour my heart out!!

"Remember this: Nobody has it easy. You never know what people are going through. Every one of us has issues. Everyone is fighting a battle."

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Hello, My Dear Old Friend!!

I asked myself the other day, what used to make me happy? Well my responses were short & I only came up with 2; crocheting & blogging. So a couple weeks ago, I started a crochet binge. Within 10 days I made 3 sock monkeys, a small animal (which I cannot name due to the fact that its a gift) bibs, baby hats, and a pillow pet. Now that I'm happy with my progress with that I knew deep down inside I HAD to start doing my blogging again. So here I am, & please bear w/ me. I have so much to say & my mind is very scattered. So if this comes out very un-organized I'm sorry....

I really can't honestly believe I haven't posted in soo long!! I guess my crappy life caught up with me, & depression took its toll. It sucked me in like a black hole, swallowing me in its entirety. It has been a real struggle trying to release its endless grasp, but today I have poked my head out. Trying to get back to my so-called "normal" life. I haven't seen my true self in over 2 long years!! Today is the beginning of a whole new adventure...

Life has REALLY changed. Still in A LOT of pain. Every single day, w/ no end in sight.Not only do I suffer from the clusters, I also get chronic tension headaches, & trigeminal neuralgia. Trigeminal neuralgia is a nerve disorder that causes a stabbing or electric-shock-like pain in parts of the face. (& overall annoyance!!) I haven't had a pain free day since June 22, 2010. That's quite a loooonnnnggg time to be in constant pain, whether it be all day or half the day! Does anyone else see something wrong with this?! Apparently my doctor isn't too concerned w/ it. "It's all normal for a chronic pain patient to develop more pain". SERIOUSLY?! Not only are my headaches getting worse, but so are my death rates. Aneurysm, heart disease, blood clots... SHEESSHHH!!

I'm still married to the best husband, and still have my little old ladies, Nina & Fudge. We have moved again, this time to a small cottage on a lake! It's peaceful, secluded, and everything I've always wanted!! I can honestly say it's wonderful here. Soothes me with it's views, & quietness.

On the harsher side of things, I'm sick & overall disgusted with doctors & their throwing pills down my throat. They don't want to seem to get the the root of the issue (like what's causing the constant pain) they just want to treat the clusters. Well I'm sorry, you try being me & see how you feel after a week!! I know I have to keep up w/ @ doctor for disability reasons, so I've only been to my general care. She's awesome, but has run out of ideas on how to treat me. Which is understandable, 80 medications is A LOT!! So even though I hate to admit it, sometime down the line (summer) I'm going to have to suck it up, & see a neurologist or a pain specialist just to keep those @ NYS disability happy...

I guess that's all for now. I'm sorry to all that followed this, & I haven't been around. I completely understand if you don't want to anymore... Oh! By the way, my MRI was deemed "un-helpful". It did show my pituitary glad was "enlarged ", but not enough to cause any harm to me, or cause any headaches!! I was so looking forward to that being my diagnosis, but to no avail, I got shot down AGAIN!! Until next time all...

K8 =]