On Crying

With debilitating pain comes tears.

But I always want to hide mine. I hate crying in front of people. All it ends up doing is making them feel bad for me and feeling helpless since they cannot do anything to make it better. The people that I love the most are the ones that I don't want to see me cry more than anyone else. Those people try to hold me up, keep my head above water, and they don't deserve to feel bad. When someone helps me so much it is hard to let myself tell them about how badly I feel.

Since I want to hide my tears as often as possible, I have to find ways to let myself sob that hide what I'm really crying about. For instance, every week I watch Grey's Anatomy and Private Practice. And I bawl my eyes out. I read a book called The Book Thief. I knew that it was going to end tragically. That is revealed on the first page. I still let myself cry over the characters. Letting go in happiness or tragedy with fictional characters is my release.

Of course, there are times when I'm home alone and I'm in tears on the couch. Not able to do anything between the pain and the choking sobs. I had to write a letter to my insurance company about my quality of life and why they should cover my surgery to get an electronic stimulator. The entire time that I wrote it I had tears streaming down my cheeks.

All of the people in my life tell me that they can't believe how strong I am and wonder how I can handle all of the stuff that I'm going through. To tell the truth, I can't deal with it. I break down and I am not as strong as I seem to be. I just want to let go and have someone else carry me through all of this. Luckily, I have enough faith that I do believe I have someone carrying me. Or at least someone who will let me lean on Him.

To everyone who has ever squeezed my knee, patted me on the shoulder, given me a hug or a high five or a fist bump, you are my strength. Without you I would not be able to deal with any of this.

Thank you.

There's Snoring All Around

It's not the latest that I've ever been awake. As a matter of fact, this is a time that anyone can generally find me on my computer. The strange thing is that everyone around me is asleep. My little brother doesn't snore. But he's in his bedroom. The three other beings in the room with me are my mom and my two dogs. And all three of them are snoring. Being in a room surrounded by snoring, surprisingly, makes me feel more alone than sitting awake by myself in the middle of the night.

Our family has had a hard time of it the past couple of weeks. A broken furnace, two broken cars, my "broken" head and a leaking sprinkler system. All of that takes money to fix and our family isn't exactly swimming in extra cash. Tonight we got some extra bad news about the sprinkler system. Turns out, the water main is broken. The nice man fixing the sprinkler system tried everything he could to patch up the leak so we could have running water. There was too much corrosion to patch anything sufficiently so my family is living without running water until the line is replaced.

If the sprinkler system is looked at as my head, the leak as my headache, the water main as my occipital nerve and the corrosion as my occipital neuralgia, then it is really easy to look at my life as running water in a home. I know that I have a lot in my life, all things considered, but my actual life is on hold while I am dealing with my headaches. The little bit of a life that I am able to live with this pain is kind of like the little bit of water that my family is able to get from the neighbor's hose. I am desperately seeking a replacement water main (or stimulator) so that I can bring back the running water that is my life.

When so many things in life are going wrong or are broken, it can be hard to sit alone with my own thoughts. I like to be surrounded by life. Dogs, people, television, radio, internet, outside with the birds, whatever I can get to. Whenever I am alone, the pain gets worse. I need distraction from the stabbing, shooting lightening bolts and the dull, constant throbbing.

But the worst is times like these; the times that I'm surrounded by snoring. I know that the people and dogs around me are need their sleep so I do not want to wake them up. I just want to talk to my mom or cuddle a puppy or even listen to my mom talk to someone else. When she wakes up for a couple of minutes, it's like a ray of sunshine cutting through the pain. While I sit surrounded by my sleeping family, the rational part of my brain knows that I am not alone. The irrational part of it wants them to all wake up and make some noise.

OwieKate ZipperHead

If you did not read the article from the New York Times tying kids' poor attention spans to the television show SpongeBob SquarePants, then please click on the title of this post.

I am into my fifth hour (yes, fifth) of watching episodes of SpongeBob because my head hurts too much to go out. I had invites to two different parties that I had to decline because even sitting up cause my head to spin and invisible needles to poke me all over the pace. My whole body aches. Every single time that I get like this, I feel old. Really old. I have to get up carefully, not only so I don't get disoriented and fall over, but because my joints hurt. For the first few steps I take, my back is hunched.

Now, after reading about the amount of pain I'm in a read might ask why I'm watching SpongeBob. The show is loud, fast and (let's face it) it can be downright annoying. I love SpongeBob. I don't have to think when I watch it. It keeps my brain off my pain for at least a while after after I stop watching. Sometimes, a mindless show taking up all of a brain's ability to focus is just what a chronic pain patient needs.

Compensating

You know how you see those huge trucks driving down the street and you roll your eyes and say, "What d'ya think he's compensating for?" Well, there are other things that people have to compensate for.

Take, for instance, my day. I was feeling so incredibly terrible that I thought I wouldn't be able to even lift my head off the pillow. Somehow I got out of bed, ate a giant cookie for breakfast and got the dogs taken care of. As the day went on, I didn't start feeling any better. Since I have a meeting tonight, I needed to be at least semi-functional. I was saying that I would just stop by the meeting and drop off what I needed to before asking my brother to turn around and take me right home.

Instead, I compensated. I took a shower, curled my hair, put on make up, found a cute top to wear and actually dug out some jewelry. If anyone looked at me, they would think that I was feeling just fine and perky and happy as any other girl out there. Yes, I'm compensating.

And it's working.

See, if I get myself all dressed up and looking good, then I start feeling like a "real girl" and that makes me a little happier. Yeah, I'm still dealing with the pain, but it gets so much easier when I'm looking like I'm not in pain. I've been able to even get myself to a point where I can drive.

Who knew that on a day when I thought I would be the most useless person on the face of the planet, a curling iron would change it all? I certainly wasn't expecting it. But I'll take it! 

What's Better Than Milk and Cookies?

Sometimes you've just had enough. I hit that point yesterday and ended up ranting and venting to a couple of unsuspecting friends who stopped by the house to grab a couple things and go. How I managed to get them both sitting at my table so I could prop myself up by the hip on my counter and let go.

While ranting with no clear idea of where my words were taking me, I was reminded of how amazing the human body can be. I have been pushing myself the past few days to get everything done that I had to get done. I would wake up, get ready for the day and, as I was struggling with just the task of getting dressed, I would tell myself, "You just have to make it until [fill in the blank] is over." Somehow, I would find a way to push my pain down and get everything done before getting home and crashing on the couch. 

For a lot of people, going home and crashing on the couch is an amazing treat at the end of the day. Crack open a beer, turn on the TV, hang out with the family and get a break from the daily grind. For me, getting home to crash on the couch is an activity I just have to deal with. Crack open the morphine, curl into the fetal position, don't talk to anyone and hold for an hour. After that initial hour, I can usually relax enough to distract myself with a show or some cross-stitch. 

My way of dealing with the unhappiness is with a rewards system. For instance, I had to be non-medicated and on the ball yesterday until about four o'clock. After that, I performed my couch crash routine, vented to my captives and then had to decide what I could do to make me feel a little better. Something not stressful that could provide me with enough fun to make it impossible for me not to smile. 

So I baked giant chocolate chip cookies while not wearing pants. 

Don't think about it too hard. Just conceptualize the comfort that activity can provide. That's one of the best rewards you can give yourself. Whether you are having to deal with physical pain, emotional trauma, job stress, family turmoil or you just need an escape from your regular routine, give pants-less baking a try!

I'm in an Abusive Relationship...With My Pain

Anyone who lives with pain for any extended period of time knows that a relationship with pain is entirely possible. Pain is it's own entity. That's the only way that I can live with it. Yes, I know that the pain is mine and it's a part of my life for now and all that other coping stuff that they teach you at the Mayo Clinic's Chronic Pain Rehabilitation Program. My pain has become bad enough that it's grown into something I almost can't deal with anymore.

I used to have a begrudging relationship of co-existence with my pain. This time around, I feel like I'm in an abusive relationship.

Every time that I talk to someone about my pain, I down-play how much pain I am in and what affect it is having on my life. In reality the pain that I'm in is torturous and controlling. Even knowing how bad it is, I often find myself somehow defending my pain and coming up with explanations and excuses for it. When I experience a flare in pain, I find a way to blame myself. I exerted myself to much. I didn't get enough sleep. I didn't drink enough water. It's a part of PMS. Even though we have tracked these things and know that there is no correlation, I try to find some sort of explanation.

Whenever I have experienced some sort of relief and am trying to get my normal life back, the pain almost seeks me out. It finds me and comes back with a vengeance to, once again, grab complete control of me. I practically have to ask permission to do things. I have to get up the courage to leave the house and possibly face a "beating" when I get home. It actually happens very often. I go out and have fun and use all of my energy to look like a real person. When I get home, I change into my pj's and and curl up on the couch to deal with my consequences.

Yes. I am in an abusive relationship. Unfortunately, no matter how strong I am, it is impossible for me to walk away from this one. I am now going to go spend some time praying that the insurance company will take pity on a poor girl in pain and appeal their decision to not cover my stimulator. 

Rants of a Zipperhead - Scar Tissue

Scar tissue sucks. For those of you who have ever had surgery or just a bad scrape, you know some of what I'm talking about. Did you know that scar tissue pops and crackles? Yeah, I didn't either.

I have been diagnosed with Ehlers-Danlos Type III mitis. It really isn't that big of a deal and is usually just referred to as "loose joint syndrome." Unfortunately, even though it is a very mild form, this diagnoses means that I have a connective tissue disorder. The biggest complaints that I have from this particular ailment manifest in easily rolled, sprained and hyper-extended joints. The part that stinks when it comes to scar tissue can be summed up in two words: keloidal scarring. When there is keloidal scarring at an injury site, the tissue does not heal normally and causes bumpy, itchy, shiny, rubbery, firm tissue growth. The scarring on the inside is affected as well.

Because of my connective tissue disorder and the four times they have cut open the same spot on the back of my head, I have more than my fair share of of scar tissue built up underneath my skin. The place that I notice it most is at the base of my skull. Every time I turn my head or look up or down, I can hear the scar tissue crackling. For some reason, the sound has gotten to me today. Sometimes I just can't even stand being inside my own body because it's too weird. But, how many people can say they know exactly what scar tissue sounds like when it pops and crackles?

Besides, at least it's not as bad as when the titanium pops. That particular metallic noise is my least favorite thing in the world. Not only is it weird to hear coming from your own neck, it hurts like hell. Luckily, that doesn't happen very often at all. Makes the scar tissue seem like not such a big deal, actually...

"There's No Restart"

We went to see my Pain Management doctor today to ask him about getting some help appealing the insurance company's decision. We didn't get the good news we were hoping for. Turns out that my insurance hasn't covered this procedure as a general rule.

Even though that news was frustrating to hear, the doctor gave us some really great advice on things to bring up in our appeal. He is going to draft a letter for them and help us out wherever he can. He is an amazing guy and we are very lucky to have him on our side. Today my mom was just saying that he seems like the kind of guy we want to invite over with his family for a BBQ.

Another point that was brought to our attention today was that we may have to go back to my neurosurgeon to talk about a ganglionectemy surgery. We had discussed the possibility of removing the root of my occipital nerve before but, if we don't get the insurance company's decision appealed, that option may become our only hope. It would be an irreversible surgery that would take all day long to accomplish in the operating room and that would leave the back of my head numb.

That isn't what we're hoping for. So, even though we got some good news, there was still enough bad news to make the situation suck even more.

I need a restart button.

The Update - Electronic Stimulator

Well, this blog is getting a bit of a face lift.

In order to get a hold on my pain, we have all (my doctors and family) come to the realization that the best option for me would be an electronic stimulator. This procedure will be performed by a doctor in Denver (who we will refer to as Dr. Denver) and is the only we option we have left aside from severing my head from the rest of my body. The electronic pulses from the stimulator will keep my occipital nerve busy so that the pain can be controlled. I will have a remote control so that I can increase my level of stimulation if I have a spike in pain.

I went through a long process of talking to Dr. Denver and his staff, filling out tons of paperwork and even getting a psychological evaluation done. Once we had jumped through all the loops we got a letter from the insurance company stating that they would not cover the costs of that procedure. Although the device itself is not experimental, the placement for occipital nerve pain is still in the process of being approved by the FDA. Now we are going to have to fight though an appeals process and hope for the best.

Since I have had to stop working completely, I am going to be doing a lot of confessing on this blog. Probably not the exciting sort of confessing that comes to most of your minds, but the confessions I make here are still difficult for me. I spend all of my energy to not let my pain win and this is the only medium that I am comfortable admitting how much suffering I go through. With the added stress of appealing the insurance company's decision, I have discovered that I need a way to get through it.

If anyone out there has good suggestions for dealing with insurance companies, please let me know. And, if the appeal isn't accepted, we're going to need some amazing deals and a ton of help for a few spectacular fundraising campaigns.

Emergency Room Shopping

One of the unfortunate parts about headaches is the fact that people are continuously running out of ideas on how to get you any relief. My pain doctor told me on Wednesday that he couldn't think of anything to help me out with my pain other than continuing on my morphine treatment, even though I keep feeling worse and worse. Finally, on Thursday night, I couldn't take any more pain. My mother and I packed up and headed for the Emergency Room to see if they could think of anything tha tmight give me some sort of relief.

We decided to try the closest hospital to us since they hosted us for my last Emergency Room visit. This particular ER is also the home for our area's Trauma Center so sometimes things can get busy. When we arrived and glanced through the glass walls we soon discovered that we would be waiting for a long time if we went inside. I then made an executive decision to go to another ER.

My mother and I laughed a little as we got in the car. How many people shop around for an Emergency Room? The laughing made my head hurt even worse so I closed my eyes and gritted my teeth as we drove downtown.

Our second choice seemed to be the right one since there were only two other people in the waiting room. I was seen and taken back to a room within a matter of minutes. The longer our visit lasted, the more I was realizing that shopping around had paid off. The ER staff at ten o'clock at night seemed to be made up entirely of good looking male nurses, doctors and technicians.

No matter how terrible I feel on the way to the ER, I feel about ten times worse once I"m actually there. Having to try to get comfortable on the hospital "beds" is a task that takes long enough for me to fall asleep. And then, once I'm finally comfortable, the doctors start coming in.

This trip seemed to be especially crazy as an endless stream of doctors and nurses and administrative staff came in. People were not only coming in one after the other, but also doubling up so that I was answering questions about insurance as a nurse put in my IV. Medications were delivered and the unpleasant sensation of drugs beginning to course through my system began.

For some reason, the three medications I was given are the ones that always make me most uncomfortable. Did you know that Benedryl, when given intro-veinously, stings? That was the first medication I was given. The stinging sensation isn't enough for me to cry out in pain, but it is enough to make me grimace. And that takes a lot these days. Luckily, my nurse administered some saline right after he was done with the Benedryl and the cooling sensation of the fluid relieved the stinging almost immediately. Saline leaves a semi-coppery taste in the mouth when it is given through an IV. I am a huge  fan of the saline. The cold feeling I get throughout my veins has always been coupled with relief for me since I went through a long period when I would go into the ER dehydrated from vommiting.

The saline was given after each of the medications that my nurse put into my IV. The other two that I had were Compazine and a drug called DHE (dihydroergotamine - a migraine abortive). I don't remember which order these were given in, but they made my shoulder hurt as if it were filled with fluid and also made my chest feel heavy so that I had to really focus on breathing deeply. These are very common reactions for me and, luckily, they don't scare me anymore. The saline helped a lot to fight these sensations as well.

And then, suddenly, I was left alone. Supposedly they came back to check in on me in 15 minutes, but it felt like an hour. I fell asleep and was uncomfortable and tried my hardest not to move. When the nurse came back in to check on me, I was happy to report that I had recieved a bit of relief. It doesn't seem like a very big deal to take down the pain from a 10 (unbearable pain that has you in tears) to a 7 (uncomfortable pain that is affecting your activities in a negative way) but, for me, that's all I can ask for these days. That change made it possible for me to sleep and that was enough to send me home.

We got home from the ER around midnight. I was so out of it that I walked through the door and straight to my bed to fall asleep.

One of the unfortunate things about this ER visit is that I spent all day Friday with a drug hangover. Not only did I recieve the intense medications in the Emeregency Room, but I had already taken my max amount of morphine just four hours before that. Now that my body has calmed down and my pain has leveled out, I'm still living with pain between an 8 and a 9 on the pain scale, but at least I'm not curled up on the couch in tears.

Why Zipperhead?

My medical journey has been long and I have told the story too many times over, so I'm not going to do that again. Basically, all you have to know is that I am a Zipperhead. So, what is a Zipperhead, anyway?

The condition that I have been struggling with started with a birth defect called a Chiari Malformation. Patients with Chiari often need to have repeat surgeries at the base of the skull. I have had four of these so far and fancy myself as a bit of a neurosurgery guru these days. Because of the tendency for them to be opened up again so many times, Chiari patients are often referred to as Zipperheads. The nickname grew on me and I have embraced it as one of my labels. There are also plans to get a tattoo of a zipper in the vicinity of my scar.


The condition that I have now been diagnosed with is called occipital neuralgia. This is a nerve problem that is difficult to deal with. My occipital nerve has had enough and is in a constant state of unhappiness due to the trauma of so many surgeries and procedures. The link at the top of this post can give you more information on this affliction.


One of the unfortunate things that comes with being a Zipperhead is the continuation of medical mysteries. Being 22, it may not seem surprising that I am awake at quarter to one in the morning. Unfortunately, I'm not up partying. I'm not up studying. I'm not up with friends. I'm not up for any reason other than I'm in too much pain to sleep.

Yay for Zipperheads.

"One pain is less'ned by another's anguish"

So says Mr. William Shakespeare in his iconic Romeo and Juliet.

Schadenfreude is defined as pleasure derived from the misfortune of others. I was not made aware that such a term existed until I became familiar with the Broadway musical Avenue Q. Listening to those lyrics makes it very clear that schadenfreude is something I experience in my every day life. Coming to this realization led me to another one.

I live with unexplained chronic headache pain. For the past five years, my family has been fighting alongside me to try to get some answers and relief. While I suffer from my debilitating pain I am not able to go to school, work more than 12 hours a week, participate in a social life or do anything but sit on my couch with morphine coursing through my veins. Despite how depressing this may sound, I have been able to find enough joy in my life and enough humor in my situation to keep my mother and I giggling in the waiting rooms of doctors' offices.

I love spreading joy. I do not love being in pain. And then I remembered schadenfreude.

The point of this blog will be for me to have an opportunity to vent some of my daily frustrations, share some of my joys and to, hopefully, allow someone, somewhere to gain a sense of pleasure in the fact that they are not experiencing my pain.