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 =]

I AM SCARED!!!

I wrote in a comment to "Winny Ninny Poo Poo" that I was scared... and you know what I AM!! DEATHLY!!! I have no idea what is in store for me until after the 2nd MRI on the begining of March. I don't know about treatment, NADA!!! I'VE BEEN LEFT OUT IN THE DARK ON MY OWN HEALTH ISSUE!!! I AM SORRY BUT I FIND SOMETHING SEVERLY WRONG WITH THAT!!! Although I do understand the doctors point of view, not worth knowing until we know whats wrong.... BUT STILL!!! Im freaking out more NOT KNOWING that if I had some inclination as to what might be in store.... I don't know, im just rambling now....

Ah Maybe a Diagnosis???

Well I know it has been a long time since I have done this,it hasn't been fun being me lately. constant pain, all day or most of the day... YAY!!!

I finally had an MRI done on December 22nd 2009. Just this past week I got the results... an enlarged Pituitary Gland. I don't know yet if its a tumor, a growth, or just a large gland. I will find out in March, as I have to go for another MRI.

I hope to GOD this is the answer I have been looking forward to!! Something to cause my pain, instead of the doctors saying "I don't know whats wrong with you". I know that sounds sick, but I hope this can all be managed. I'm ready for whatever needs to be done; surgery, chemo, WHATEVER!!!

!!!!!KEEPING MY FINGERS CROSSED!!!!

I AM SOO SOORRYY!!

HAPPY HALLOWEEN!! (that is my crazy old lady Fudge)

I know, I know I haven't been the best blogger lately... I'm not going to make excuses either. I'll just tell you the truth. I have been in this downward spiral of depression. I got that way because every time I go to the doctor I have a new ailment, or issue to overcome. I have exhausted all medical treatments. (meaning drugs)Basically, I have been on every freaking headache drug there is, and my doctor told me "I don't know what to do next." I tried to find a pain management doctor, but lo and behold ALL THE DOCTORS IN MY AREA DON'T TAKE MY INSURANCE!!! See why I get a Lil frustrated?? I would have to drive 2 hours away, and wait 6 months for an appointment... GRRR!!!

Not only that but I haven't been feeling all to well either. Chronic headaches stink, and I don't wish them on my worst enemy. Wait, maybe I do....;-)

Anyway, I've been OK lately. Trying to stay positive, and thinking good thoughts. Its been rough 3 years, but I know there is something out there that will help, there HAS TO BE!!!

I wanted to say a huge THANK YOU to all of you that read this, comment, send me your well wishes, or anyone out there that goes through this. It highly encourages me to keep this up, and brightens an other what gloomy day. I wanted to do this for that reason alone; to find other people like me, and to share the "inside" scoop. I promise I'll be back!!!