A lesson To Us All

I had to learn a hard lesson recently. Today I am more than thankful for it, but getting to this place hasn’t been easy. I cannot give actual specifics of what set me off. But I think the value of what I learned is worth sharing with you all.

It all started with something I’ve shared with you before, the lack of empathy. The details of how I was upset isn’t important, but I can say I was really hurt. I felt isolated, alone & quite honestly like I have the plague. I felt like no one wants to be around me, maybe because people think I’m contagious I don’t know… However, I knew deep down inside what I was fretting over was ridiculous. I knew I shouldn’t be upsetting myself so much over something I can’t change. I can’t change the way people react to me. I can’t for the life of me make someone react the way I want them too. I was focusing SO much over what I “wanted”, and not looking at what I already have.

So, while all this ridiculousness was festering in my brain, I threw myself into a downward spiral. All mixed with crying, depression, self hatred, regret for all that’s wrong with me, having to let down others, anger at myself & those who I think didn’t seem to care, despair & craving a sense of normalcy in my tumultuous life. I always fight that battle. Everyday when I wake up, I just wish for one single day I can be normal. But we all know that right? =]

So I went to the usual place where I can vent, Facebook. Yes, that social networking sight. Which is funny because Facebook is what started this whole debacle. I did what I wanted, said what I needed to without hurting anyone or bringing up specifics. Yes, I know I probably shouldn’t have “aired my dirty laundry” & started drama. But you have to understand at that particular moment I was raging mad. I’m not making excuses for myself, but I feel deep down to my very core it was what I needed. (Besides if I didn’t do it I wouldn’t have this awesome story of empowerment, and companionship to tell you!!)

So through the power of social networking my will was done. I’ll admit, I said what I did to get a response from people. I needed to know that what I was feeling didn’t make me crazy. What I didn’t expect was the outpouring of love from people I’ve never even physically met! (As I’ve stated before I have an amazing bunch of people who are like my family. Wonderful people from all over the world, who all have one thing in common, pain. Everyday we support, encourage, and send love across the miles) I never knew how deeply these friendships have developed. I look forward to speaking with them all everyday, but I didn’t expect SO much empathy. That right there upset me too. How is it that someone I’ve only known over the internet uplift me more than those who are around me?!

So getting to the point here, I discovered that everyone wants to be wanted. Everyone needs to be needed. The whole issue is, you can’t always get what you want. I ALWAYS want people to ask me how I am, ask questions about my conditions, or even ask what my day is like. If they don’t, I feel like they just don’t care about what I’m going through. I feel (once again) that lack of empathy, acceptance, encouragement, & love! So through the thoughts of others I realized that some people aren’t like that. Some people maybe don’t know HOW to ask. That was THE big realization for me…

“Maybe they want you to feel as normal as possible, so they don’t bring it up. Or maybe it upsets them too so they don’t want to talk about it. Unfortunately that’s just something you have to deal with and not let bother you.”
My friend “J”


Ok, makes sense… But how hard is it to ask a simple question?! It might just be me, but I’m a knowledge freak. If I don’t know about something I’m right on the internet scouring for information. On the other hand, I can absolutely see her point. Some people are just dumbfounded over all that’s wrong with me. So it may make them uncomfortable asking about something so life changing.

“I think its because you’re an over sensitive person (for lack of a better word) But in a good way, not a bad way. When you care about something it’s with your whole heart & being. So it’s hard for you to deal with people who aren’t like you. Because if the shoe was on the other foot, you’d be very upset & overly caring about the person (s) in need. Nowadays it’s like people are desensitized to the needs of other people. They can’t look beyond their own noses & lives to see the other person reaching out for help. Just hang in there. You’re a shining example to other people as to how they should be acting and feeling.”
My friend ”J”


I read this, I had tears in my eyes. She said exactly what I needed to hear, & plucked the words right out of my soul. I someone to analyze me, & tell me that I’m ok. I needed someone to assure me that my existence however small it is, matters. That I K8, am loved & needed. She relaxed fears, & made me realize that I’m alright.

A simple act of kindness goes a long way. Helping a friend through a rough patch, or reassuring someone that they are loved, or maybe just asking a simple question. It never hurts to reach out, & say a few simple kind words. This can be related in anyone’s life. My fellow chronic pain people, an ill family member, a new set of parents, or anyone. You have no idea how much it lifts the other persons heart!! It can make their whole day a little brighter.

Also, I really have to say that a little self assurance in your battles goes a long way too. One has to have that boost of confidence that what your doing is right, you’re fight is validated, that you can stand up for yourself, that you have HOPE things will be ok. Also having that support group to back you up, makes it so much easier to deal with it all. Having that backbone of people to listen to you vent out your frustrations makes your day go by A LOT smoother. Because in all honesty, they’ve probably gone through the same thing, or something almost like it!!

Here’s the lessons of this rant I want each & everyone of you to understand:

1. Reach out to a friend, family member, ANYONE!! Say some kind words, or ask if they need help

2. Have a support system you can rely on

3. Don’t fret over the little things in life. Focus on what you have,
not what you want!!

4. Who cares what other people think! Deal with the hand you’ve been dealt.
Do what makes YOU happy.


“It’s tough enough dealing with this illness without supporting other people.”

“I have stopped worrying what other people think. If they don’t have compassion then I don’t want to know. I think when you feel that bad your mind starts to put more into things, for you to dwell on. Constant pain is torture for the mind, body and soul. Be good to yourself, it’s not your fault you’re in such pain”.

Many hard lessons were learned, but all the positives outweigh the negatives. I’m a stronger person, but most of all I know I’m not alone. There are people out there who care, & are more than willing to help me. Some of the people who I thought cared, don’t know how to ask me about my condition. So I’ll have to institute a way to better project my illness, so other people can feel helpful towards me. Still in the long run those insignificant others that blatantly said they don’t want to hear about my “issues” don’t matter to me, because I have the best support group one could ask for. I don’t need any negativity in my bubble!!

In The Twilight Zone

Yes, ok I'll admit it, I've been lacking in the posting department... but you have to understand being in pain will shut someone down. Especially (like me) for months on end. When I get like that, days just pass, ever so slowly. I haven't the faintest idea what day it is, or what month. It just seems like I am in my own world of life crushing pain. Hence, the Twilight Zone...

So what's been going on for 2 months other than pain?

1. New drug (S)
Go frickin figure!! Lets try #30 on the med count shall we? Does it take effect? Care to take a guess on the outcome? Yup, that was a NO GO. Moving onto # 31... ok fine, at this point its like whatever, another one? SURE!! Somethings got to work sometime right?? I give it a big ol fat NOOOO!!! The new drug, Oxcarbazepine is GIVING me CLUSTERS!! See anything wrong with that?? I do!! But the frickin nuerologist says "Its ok, lets just see in 6 weeks if it stops them from coming." Yeah ok... BITE ME!! Im not taking a drug that gives me MORE daily pain, to see in six weeks if it STOPS it or prevents them. What the fricking hell are these quacks thinking? Do they want me to suffer?? And this is a new doctor too... an overpriced joke.

2.The Move

Without upseting people, and going into detail, we were forced to move. We had less than a months notice to be all out and gone. Awesome! So we packed up a three bedroom house, and moved it into a quaint 1 bedroom. I love it here though! My "landlords" have a hot tub, and a pool that's free game! Ya better believe it I am soaking it up!!

3. Pregnancy Scare

I was on Indomethacin and didn't get my period. So needless to say I was freaked out! If you don't know, a lot of so called "headache" medicines can cause fetal harm. So, I had a blood test on a Friday, and the results wouldn't be in til Monday. Ok that weekend sucked! Not because I didn't wanna be pregnant, but I didn't want there to be harm to the baby. I just kept thinking Id have to have an abortion. Oh! Here comes the greatest part! Hold onto your seats... the nuerologist who ordered the test didn't even call me!! I had to call her, then get the results on that following WEDNESDAY!! Why didn't I see something wrong with them then??

4. Pill Popper

For some reason I can't find anything about this new doctor I like. Here's another reason why I detest these people... THEY ACCUSED ME OF BEING A PILL POPPER!! Hold on, im trying to maintain my sanity here.. I'll explain... As I have stated above, there has been endless drugs (31 of them to be exact) tried and not one has worked in preventing my attacks. So yes, if I am in constant pain, you better believe I rely on pain medication to get me through the tough days. Ok I DON'T take them for MINIMAL PAINS or ALL DAY LONG. I swear on the nearest Bible I still have a bottle of Tylenol #4 from November 2008. So please tell me how I can be an addict?

I take them when the pain is unbearable, and that's all. Got it? Good! I WON'T be going back to see her... this time I mean it!!!!

5. My Own Disease

I saved the best for last.
According to this same nuerologist, I (insert my name here but im not going to) have my own disorder. It seems that I have a vast array of different kinds of headaches all culminated into one miserable person! Yes its true. So needless to say they don't know how to treat me. They're only focusing their attention on the clusters. Which is all fine and dandy with me, but I am in constant pain! Helping the clusters only help half the problem. So what do I do now?