Let's Cure Kate

April 14, 2013

To Whom it May Concern,

My name is Kate Richardson. Two weeks ago today, I turned twenty-four-years-old. When I was a little girl, I would have guessed that I would be a veterinarian by The time I was this age. As I got older, I dreamed of being an English teacher. In my wildest dreams, I would never have guessed what my life at twenty-four would actually be like.

Right before I turned sixteen, it was discovered that I had a Chiari Malformation; a birth defect that causes the skull to stop stop growing before the brain does. As a result, the base of my brain was hanging twenty-two millimeters below the base of my skull. This put enough pressure on my spinal cord to cut off the flow of spinal fluid on one side as well as create a three millimeter cyst in the middle of it. After the surgery to correct the malformation, I got a severe spinal fluid leak. Another surgery was done to correct the leak and then the next eight years kind of start to blur together in my memory. I just never felt "good" again after that second surgery. It took us years, countless scans, endless medications, a trip to the Mayo Clinic and a few nerve blocks to finally discover that I had a pinched nerve between my top two cervical vertebrae. So I had another surgery to fuse C1 and C2 together. When that fusion didn't take, had to re-do the surgery.

After getting cut open so many times and abused for so long, the back of my head just gave up. My occipital nerves are stuck in a pattern interpreting pain signals as "the norm." My current diagnosis (along with fibromyalgia) is occipital neuralgia. We've tried to manage the chronic headache I live with by implanting an electronic stimulation device made by Boston Scientific. The spinal cord stimulator got infected the first time we implanted it. After surgically removal, I was injected with a PICC line and put on high doses of continuously infused IV antibiotics for two weeks. My latest surgery, number seven, was done to re-implant the stimulator.

For almost a year, everyone thought that this was the solution to managing my pain. But it hasn't been working as well lately.

I have had to miss too many things in my life; graduation, events with family, numerous tours with musical groups, withdrawing from school and quitting jobs. I've worked really hard to fill in some of the gaps. I've gotten my G.E.D., I participate in music at my church (The Cathedral of the Rockies), I raise Guide Dogs for the Blind, I'm an active member of P. E.O., I've completed a year's worth of classes at Boise State University and I'm a full-time nanny. These days, however, I haven't even been able to be counted on to perform all my duties in those things that I love. As a matter of fact, I'm simply spending far too many hours in bed sobbing or in the emergency room desperately seeking enough relief to simply let me sleep.

It feels like the back of my head is going to implode and that there is a vice on my temples squeezing my skull to its breaking point. You know that headache you get from staring at a computer screen too long? Yeah, I have one of those twenty-four hours a day, seven days a week. With occasional, intense stabbing pains in the occipital region and frequent bouts of dizziness accompanied by sparks shooting across my vision. I can't walk through my own home without my cell phone in case I fall and am too weak to get up again. I've gotten to a point where I am missing work once a week because of pain and I am having to seriously consider not going back to school as I had originally planned.

I can't live this way anymore.

 And I can't fix it by myself.

 Generally speaking, I am not the kind of person to ask for help. I've just always been the bright, happy, optimistic girl that people admire for her strength. Truth be told, I'm running out of strength. And optimism. And happiness. And brightness. I need help.

 I know that I am not the most critical medical situation out there. I am not dying. I still have control of all my limbs and my senses. I really do know. And that's why it has taken me so long to ask for the help that I need. But all I need are some ideas. If you have any ideas on other options I should investigate, please let me know. If you have absolutely no ideas, please pass this on so that your friends and family and doctors have a chance to give me a lead. If all you can do is send me good thoughts and prayers, that goes a long way, too.

 Thank you for your time, your consideration and for helping me get my life back.

Kate Richardson

kate.fr89@gmail.com

Define Excited...

ex-cit-ed [ik-sahy-tid]
adjective
1. stirred emotionally; agitated

2. stimulated to activity; brisk

I'm hearing from a lot of people since I announced that I'll be having a procedure done on the 25th. I know that people care about me and I know that they want me to be better so, in that regard, the good wishes are greatly appreciated. I can't tell you how many messages (verbal, handwritten or virtual) I've received telling me how excited people are for me or that they can't imagine how excited I must be. 

Let me clear something up for everyone: I AM NOT EXCITED.

Don't get me wrong, I am happy that we are finally making some headway on my medical problem. I am ridiculously pleased that I'm going to be getting a chance to feel better. But it's really, really hard to be excited. Let me help put you in my place so that some of you can understand where I am coming from.

First, I will not be having surgery on the 25th. I will just be getting a trial stimulator implanted. My pain doc will inject a couple of electrodes into the back of my head, just under the skin. I will live for a week with wires hanging out of the injection site that are attached to a battery/controller. I will get to play with the level of stimulation to see how effective a permanent stimulator will be. After about a week, the electrodes will be pulled out of the back of my head and I will be left back in my original state of pain.

Secondly, there will be a lot more fighting after the trial. Once we (hopefully) prove that the stimulator will be an effective tool for managing my pain, we will have to convince the insurance company to let us get the permanent stimulator surgically implanted. 

Third, my life is hanging in a very unhappy balance right now. I'm in so much pain on a daily basis  that all I want to do is crawl out of my skin. Being trapped in a body that doesn't seem to want you is a torturous type of existence and it makes it very difficult for me to be excited about anything. It is so much easier for me to be angry at my medical situation right now. Being surrounded by people who are "excited" for me can drive me a little insane. I am constantly having to remind myself that these people care about me and that's why they are passing on their congratulations.

Lastly, if you will notice, there is nothing in the definition of "excited" that says it's a good thing. I might be excited in the agitated way, but I am not excited in the way that most people hope I am.

Now that you are armed with the facts, I would also like to say this: Thank you all for driving me crazy. You honestly do not know how much it means to me. 

Christmas Wishes

I have always thought that the Christmas Wish idea was a lovely one. As a kid, you sat in Santa's lap, stared at his bushy beard and divulged to him the toy that you wanted more than any other....at the moment. In my life, I believe that I have witnessed two true Christmas Miracles. Each of these miracles have resulted from a wish, but neither of these wishes have been whispered into Santa's ear.

When my little brother was seven-years-old, he was in need of a father figure. Our dad was in Seattle and we didn't get to see him often enough to satisfy a boy's need for a male role model. My mother put in an application to get him paired with a volunteer from Big Brothers, Big Sisters. Since his application was still in the "Too Be Matched" pile, BBBS sent him a card asking him to write down what he wanted for Christmas so that thy could at least give him something while he spent his holidays waiting. When Mom asked him what sh should write on the card he said, "Can't they just get me a Big Brother?"

Mom replied that they were wanting to send him a toy while he waited for his Big Brother. My brother shook his head and proclaimed, "All I want is a Big Brother."

His Christmas wish was pure and simple.

His Christmas miracle came in the form of a Big Brother that became a part of our family and whom we still love and hear from fourteen years later.

Sometime around the 20th of December I couldn't take it anymore. I found myself in my bed, on my back and staring into the blackness hanging in front of my ceiling. I tried to pray silently, but my thoughts kept getting too muddled to follow; so I spoke out loud, fighting against the choking tears I was trying to hold back. Deciding that shorter was better, I said, "I know that my family is not going to have a big Christmas. Having everyone together and sharing the joy of the love you have given us is a gift that I am happy to receive. I try not to ask for much, but I can't help asking for this; please send me an answer."

An answer. That was my Christmas Wish. Pure and simple.

My Christmas Miracle came on the 23rd in the form of a letter from the insurance company saying that they would approve my occipital nerve stimulator trial.

I am not a Christian who dwells on the details of how the miracles in the Bible took place. I do not expect to be swallowed by a giant fish, to see a man walk on water, part the Red Sea or speak with a burning bush. These pleas came from a rarely used part of the heart that can only be touched in a moment of pure hope, a little desperation and a lot of belief. These wishes were not made to gain anything material or receive any appreciation. Both the statement from a little boy and the pain filled prayer from a suffering young woman couldn't be ignored. Everyone feels, at times, that they have hit rock bottom. I have felt that way many times in the past six years. Sometimes it feels as if our wishes, prayers and pleas disappear into a black abyss and never make it farther than two feet from our mouths that utter the words. Feeling forsaken is a part of living. But, let me tell you this: God is good. And he knows what he is up to.

Merry Christmas

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!