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.