This is a blog about my life with Cluster Headaches, Chronic Tension Headaches, Chronic Migraines, Trigeminal Neuralgia & Fibromyalgia. Frankly, I don't have a clue when or where pain the will strike, or what tomorrow has in store. This is just my little place to vent about everything. I want to explain what I go through, so maybe we'll all feel like we're not alone in this world.
Saturday, June 2, 2012
Migraine Awareness Month #2: Tea for Two (Family Q&A)
Let me just clarify here for a second. My family & extended family are the best support group I could ever ask for. All I mean by this topic is, there has to be something someone out there is afraid to ask me. In a group setting that person may feel more comfortable to ask that question. I know some are more knowledgeable on my daily life than others. All I want out of this "tea date" is everyone feeling like they know, understand & comprehend all that I go through. Also to not feel ashamed, or burdened by asking me ANYTHING! I'm an open book, I'll always answer anything!!
Hmmm, this may just have to happen!! Great idea huh?! I'm sooo giving myself a pat on the back for this one!!! =]
Have a great pain free day everyone!!
K8 =]
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.
Friday, June 1, 2012
Migraine Awareness Month Blogging Challenge #1: Your First for the First.
If you have a different headache disorder, please join us! Just substitute your headache disorder for Migraine and share with us.
My first experience with a Cluster Headache started in the middle of the night on September 29th 2006. I was 25, a newlywed & enjoying life. Around 2am I was sleeping soundly & was awoken with the most terrifying pain. The stabbing & burning agony was centered around my right eye, forehead, & temple. I honestly thought I had developed a brain tumor! I crawled on to the floor, laid there on my hands & knees with my head in my hands. I rocked back & forth, also while sporadically banging my head on the hardwood floor. I cried endlessly & shrieked out in pure agony. While also begging & pleading for the thunderous pain end! After 20 minutes, it stopped completely. I was dumbfounded because there was no pain at all, it just stopped! The only signs of its reign of terror was leaving me lethargic & feeling like I got ran over by a U-Haul moving truck. I was immensely shocked & terrified by what occurred. I couldn't believe it at first. It seemed to me like it was the worst nightmare in history. Then my poor Husband watching it all helpless to its wrath, broke my heart!! He couldn't believe it either! He kept asking me was I OK. All I could mutter was yes & I fell back asleep.
H.O.P.E
HOLD ON PAIN ENDS
K8 =]
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.
Tuesday, May 29, 2012
Dark Cloud of Sorrow...
I am such a weird person, that I’ll never admit I have a problem. Not just any little old problem. A mental problem… I will never tell anyone around me that I am depressed, anxious, or even mad. But something deep inside me told me what I was feeling wasn’t normal. I didn’t have to suffer with these thoughts, feelings & horrible emotions. So I sucked up my pride & asked my doctor for help. Lately this whole chronic condition drama has been getting to me. I’d like to think that after almost 6yrs of dealing with chronic headaches, my mental health has been great. I don’t let “it” get to me, seems like I am more influenced by others… Other peoples reactions to me, thoughts, & actions. I also don’t bury my feelings, if I have a problem you better be sure there is going to be a long stream of word vomit emanating from my mouth!!
Like I said before (I got side tracked as usual) I admitted to myself I have a problem & asked for help. I have been getting these immense panic attacks. I’ve never had one before & I never realized how severe they can be! I just succumbed to all that has been going on with me. I crippled under the pressure, & my body couldn’t take anymore. I have been getting the whole “Why me” & “I cant do this” thoughts. I’ll be very honest, I even had thoughts of suicide. The pain has invaded my castle, taking over every single aspect of my kingdom. Changing the rules, making a new Queen, & sending the Huntsman after my heart. Sending a dark cloud of despair throughout my whole being. I wasn’t strong, I lost my drive, my determination, & the Huntsman has caught up to me.
As of right now as I sit in a hospital waiting room (family member having minor surgery) I feel a little better. The panic attacks have diminished to 2 a day besides 12. Not only have the medications helped, but I’ve also changed. I’ve stopped thinking of “Why me” & instead say “Why not me?” I have stated this many times & I’ll keep repeating it until the day I die, IM A FIGHTER!! WHY CANT I DO THIS? Maybe there is a reason I got chose to handle these burdens. Just because my life didn’t turn out the way I expected it to (SERIOUSLY WHOSE LIFE REALLY DOES?) doesn’t mean I cant enjoy the time I have left. I can handle this, I can, I can, & I will. Because in all honesty, I don’t have a choice! I don’t have another body I can transfer to, even though that would be awesome!!! I think my next realization about myself has to be, knowing & allowing myself to relax. I have to not think of myself as a burden too. Whenever I have a bad day, I always think, “I wish I could do this”, or “That needs to be done.” Breathe K8 calm down… Like the famous movie states’ “After all, tomorrow is another day!”
Lots of hugs to all!
K8
Sunday, May 6, 2012
A lesson To Us 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!!
Wednesday, April 25, 2012
Well it's official...
I have been diagnosed with Fibromyalgia. I can't say I didn't know it was coming. I've felt some pain in my lower back, hips, knee's, shins, ankles, shoulders, and the back of my head. At first when this started a month ago, I thought I wasn't wearing the right shoes. It didn't feel like I was getting enough support. However, no matter what I did, it never seemed to go away! Me being the knowledge freak I am immediately started looking up all my pains & everything thing I read pointed to Fibromyalgia.
I can honestly say, I'm ok with the diagnosis. I knew something was wrong, & I prepared myself for the worst. I can't speak for my family, but they all seemed more scared than I was. It all comes down to this, I'm a fighter, this or any condition I have IS NOT going to beat me!!
Let me just fill you in on what the Fibromyalgia has been like...
I have an easier time with it in the morning. My body is easier to maneuver, & I don't wake up in too much pain. (The head is a whole other story. Still fighting that daily battle!) I feel this constant deep ache, tingling, and then as the day progresses it turns into a shooting pain. Starting from my ankles, all the way up to my hips & lower back. Then back down again. (That's not even including the pain radiating in my shoulders & neck) It's bearable then goes to a complete shocking pain. It is comparable to my 20lb pug Fudge jumping on me constantly. Pounding & pounding, never ending. It hurts to walk, but it hurts more to lay down. The pressure of the couch is enough to send my tender areas into over drive! As evening falls, I'm lucky if I can even get up. My God, I feel like I need a walker. I'm all hunched over, baby stepping my way through the house.
I've fallen 4 times so far (no injuries just bruises) & had quite a lot of episodes where I couldn't get up. The first time really rocked me. My husband & I had some family members over & as hard as I tried, I couldn't get up off the couch. That really bothered me. My body was failing me & there was absolutely nothing I could do about it!! I instantly broke down in tears, making a spectacle out of myself. Inside I kept saying my mantra, "This isn't going to beat me" & my body finally complied, also with the physical strength of a family member aiding me to a standing position. Hey, everyone no matter how strong needs a weep. I never had mine with this new diagnosis, so maybe that was my time!
Speaking of Fudge, I also knew something was terribly wrong with me when she wouldn't leave my side. (This was before the diagnosis, but she still does this every day.) Everyday she'd camp out right next to me on the couch. She'd follow me all around. Now if I wince in pain & cry out, those big brown eyes will look into mine, assuring me everything would be ok. She's quite the Mama's girl now! She's calmed down quite immensely, & never ever jumps on me anymore!! Yay!!
Well that's about it. I'm new to this whole Fibro world & haven't really figured out if I have any flare triggers, or what meds will help. My doctor put me on Lyrica & I'm still in the transition of upping the dosage. So if anyone has some tips, ideas or what medicines have worked for anyone with Fibromyalgia, your input is greatly appreciated!! I want to know all I can, so that my demon fighting army is ready for battle!!
Wishing you all well,
K8 =]
Saturday, March 24, 2012
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 =]
Monday, March 19, 2012
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 =]

