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!!

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

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 =]

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!!!!