This Is What Distraction Is Like…

For the past few weeks I have ferociously been working on a project with everything I have. Kickstarter.com is an online venue where you can raise money for creative endeavors. My goal was to raise money so I could get a printer, scanner and supplies to reproduce some illustrations I had created of curvy women. I had my mug on film, edited a big video and budgeted everything out….But then I had a complete melt-down. What was I thinking!? I didn’t have the space to do this, I didn’t have the TIME, and realized I had been ignoring one important thing in my life that probably needed attention first.

After my last appointment at Mayo, I sort of went dormant. I didn’t think about my brain, or my AVM/AVF. I didn’t want to! So, I conveniently distracted myself with summer plans, job searches, watching Jeremy fly kites, freelance work, and Kickstarter.

I am not putting off Kickstarter indefinitely, but I need this year to take care of myself, and my brain. Oh, and plan a wedding!

So, I called the University of MN to talk about the tests that need to happen next, and get that taken care of. I only left a message, so I am waiting for a response, but I will probably be getting a CT Angiogram in the next few weeks. With that they will be able to determine whether or not I have an Arteriovenous Malformation or an Arteriovenous Fistula. The fistula is on the dura matter, while the malformation is within the brain tissue. Once this has been determined, I will have a better idea of what treatment will be needed. Radiation won’t work as well if it is a Fistula, but a Fistula is also less risky as far as a rupture is concerned, so that is somewhat reassuring.

We’ll see what happens, but for now I need to stay focused. I think I will take up meditation this summer.

 

Land of the Free and Enslaved

Oh, I am so dramatic.

Really though, the more I look at how this country works, the more I begin to believe this statement. We are free in many facets of our everyday lives. I wouldn’t change that. What I cannot stand is how strapped down we are with student loans, medical expenses, and the cost of living in general. I am sick of how poorly workers are treated in their companies, and how people never really seem to get a foot up on any of their problems because the big guys just keep smashing them down.  The quality of living for most Americans compared to what our country seemingly represents is atrocious.

I am speaking from some experience, but also from the experience of my co-workers. My debt to income ratio is 9-1. I don’t have credit card debt or a car loan. I simply have student loan debt way past my eyeballs. Now I am afraid of any sudden medical bills, so I call my insurance (I have basic insurance through MN Care…I am grateful) 2-3 times before each appointment to make sure I am covered. I do this in the hopes that I talk to 2-3 different people, just to triple check.

Then there are my co-workers. One specifically, who’s mother is sick. She has to decide between work, or spending time with her mom because we have NO benefits.  People like her cannot properly grieve, or spend quality time with their family, because the stress and grief is going towards worrying about bills that need to be paid. I am trying to get our company to help in some way, so she can have some peace of mind, but I am not very expectant. I told her today I was trying to get upper management to help financially. She started crying, which made me cry. I just don’t want to see her worry. She is such a wonderful person, who has been through A LOT in her life.

With all of this, I am trying to keep a positive attitude, and hope that it might spark some interest in people to help create a fund just for situations such as this one. I like to think that if I were in this situation, someone would help me.

Treat others as you want to be treated.

So, my job…I work in customer service at a theatre in Minneapolis. I take in a lot of peoples’ problems, and have to distance myself far from them. There are some days where I pay no mind to Sally Sosoft who is worried she won’t be satisfied with her seats. Then there are days where I want to scream at the top of my lungs at Ms Ladeeda who is so irate that the company policies don’t suit her needs. She yells at me, tells me it’s my fault, and that she will never be a customer with our company again. In return I just want to say, “Fine. Nobody want’s you here anyway.” But I can’t. I bottle it up, cork it, and throw it away. Those people are like bad wine; they will never get better with age, so you might as well toss them out the window.

I think this is enough of a rant today.

I hope this works out. All of it.

Have a beautiful day <3

WTF (Why The Face)

If we’re honest, I think we all know what WTF really means. That was pretty much what I was thinking as I sat in the oak covered office, with it’s 1960′s decor and tacky curtains. I was looking for the rotary phone, but found one from 1985, so I felt it was semi-legitimate.  For a state of the art facility, they really seemed to focus more on the decor of the lobby rather than the small offices that most of the patients see more than the guests. And what was with all the fountains and wasting of water? There were miles of marble, sculptures around every corner, paintings donated from rich sick people, and lots of windows. But when you step into the neurology department, you step back in time. The yellowing rubber on the stethoscope made me uncomfortable.

The doctor was on time, which was great, but that was probably the highlight of the visit. As he introduced himself he looked over my charts, and “reminded” me that I had an MRI scheduled that afternoon and then I would meet with Dr. So-and-So the next day at 9am. Excuse me, what?

First of all, I had NO indication I was set up for this extra MRI (insurance, will you cover this?) nor did I have any heads up on the fact that I had another appointment the next day. Maybe this is how hotels in Rochester make their money…last minute reservations.

With this, all I could really say was “shit”. And then I stuttered, explained I had no idea about these appointments and that I couldn’t do them, and then all I could then think of was….”Well what am I talking to you for? What is the point of this meeting?” I felt like reaching over the table to the doctor and wringing is bow-tied neck…but I didn’t. I quickly realized it wasn’t his fault and tried to take the meeting for what it was…a consultation (also known as a screening). He explained to me that normally he meets with patients first to determine the situation, and then they meet with a specialist. Why wasn’t I informed of this normal process earlier?

So, what did I get out of this meeting? Well, I didn’t get the MRI…I know I can’t take any ibuprofen or blood thinners because if I have a bleed I won’t clot, and therefore will have more complications. I now know that my history of epilepsy might be concerning (unrelated to my AVM) and that the noise in my ear has to be something, so Mayo wants to do more tests. More and more tests.

I am sick of being a number, a lab rat, and tossed around like I don’t have a life. I don’t get paid sick days, I don’t have access to lots of money, and I don’t want to be tested anymore. I just want to talk to someone and get some answers.

I asked if my second appointment (which I had to move to March 5th) could be done over the phone, and the doctor said absolutely not. They want me to take the time to drive 3 hours to sit in a room and make sure all pistons are firing at once. Trust me, if I thought for a second that I had some signs of a stroke, I would be going to a hospital in the cities.

As much as I hate the medical industry, I admit I would seek their assistance if I had a problem that I couldn’t fix, but all of this back and forth business is driving me insane. It puts a bad taste in my mouth.

Needless to say the appointment was disappointing. I did, however, get to have lunch with a friend of mine I hadn’t seen in a while, and Jeremy was with me the whole time supporting me through everything. I swear, without him, I would be a lost puppy dog. He keeps me grounded, and for that I love him very much.

So, on March 5th I might head down to Rochester again, but not before calling to clarify exactly what I will be meeting with the doctor about, to make sure there aren’t any hidden MRI’s or appointments.

I am so close to giving up, but I will stick it out and get more answers. I guess I have to dig deeper. I just can’t get over how corrupt the medical industry is…WTF.

 

Happy Valentine’s Day to Me

I have done it folks! I have an appointment at Mayo Clinic on Valentine’s Day. I will be driving to Rochester, MN with my lovely fiance (yes, I am engaged-eth to be wedd-eth), and pictures of my brain in hand. We will then sit in a waiting room for a while, hopefully not too long, and chat with someone from the neurology department about those funny spots in my brain.

Then (hopefully) we will have lunch with a good friend of mine I haven’t seen in almost two years! It seems like yesterday we were staying up all night in our studios painting, eating a groggy breakfast at Key’s Cafe in St. Paul and beating our desks with yellow foam tubes when we got frustrated with the idea of art.

Then in the evening Jeremy and I will stay home with the pup, make delicious food and eat s’more pie. Holy crap am I am a lucky lady!

Happy Valentine’s Day to Me.

 

Bif, Bam, Boom

Vertigo: A spinning, woozy, nauseous ride.  I am sitting at my desk and all of the sudden the floor and ceiling switch places. It’s not a very pleasant feeling, and lasts from 30 seconds to 2 minutes. I wonder if this is because of my AVM or because I had a doughnut this morning. Maybe my body is punishing me for the delicious round cake.

So, now I am waiting. I am waiting for a form in the mail so I can sign off on my private records to be sent to Mayo. Then I call the U to send my slides and imagery from my tests to Mayo. Maybe I will have to wait for that too. Then I wait for Mayo to call me to make an appointment.  Then, I drive to Rochester and sit in a white office and have the doctor tell me there is something wrong with my brain…

If there is indeed something wrong with my brain, and I need to get it fixed, I hope beyond hope that the dizzy spells, headaches and wooshing sounds go away.

 

 

Happy New You

Well the upcoming new year has me thinking… a lot! What will happen if I do this? What will happen if I do that? Should I stop eating sugar? Should I start balancing my checkbook and keep better track of my spending?

A lot is going to change in this new year, and I am excited to announce that I have some pretty solid goals, which don’t include losing weight. That is just a given. My main goal is to find fifteen minutes of peace each day and soak my feet at least once a week in hot water with lavender oil…

I was hitting some brick walls; more and more just kept cropping up, but I think I have knocked a few of those suckers down today and might be getting some answers to my questions.

Over the holidays I had some time to think, and eat lots of cookies. I thought about these risks that, in an earlier post, I made clear I could bravely take on head-first.

I am always skeptical of the medical industry and sometimes think there is nothing wrong with me, but I am taking a chance and going to talk to someone at Mayo Clinic in Rochester before I meet with a holistic doctor. I had to call ten people and their mothers to get the information I needed, but I think I am finally getting somewhere.

I don’t know when my appointment will be, but I hope it happens soon. Plus then I will get to visit some friends in Rochester that I haven’t seen in a couple years. Bear with me, things will start moving along and soon enough (if I go ahead with radiation) you will see pictures of me with a frame screwed to my skull. I have to remember the human body is a miraculous machine and all will work out in the end.

Until then, happy new year and best wishes to you and yours.

Confused? Yes.

I e-mailed my doctor to specify exactly what the side effects are going to be, and among the usual suspects of dizziness, headaches and risk to stroke, tumors and cancer were thrown in there, as well as possible double vision and muscle weakness.

I know I said everything comes with a risk, but I am finding myself not convinced that radiation is what I should do. Logic tells me to get another opinion. I have held off my appointment for treatment, and plan on seeking assistance through Mayo Clinic in Rochester and hopefully a holistic doctor.

The whole reason they want to go into my brain is to prevent a bleed from happening (weakened vein bursts, causes stroke and possible brain damage). So, why can’t I find another method of preventing this from happening that doesn’t involve cracking my skull open or burning tissue in my brain? What if I ate foods that kept my blood pressure low (it’s pretty normal at this point)? And what if I continue not to smoke, eat well, and exercise?

I am hoping to meet with a holistic doctor to discuss these options. I know that there is no way to naturally take out the bad tangle of blood vessels without going in there with machines or knives, but there must be a way to keep it from rupturing.

That is where I stand now. The holidays are thankfully distracting me, but come the new year I need to start doing something. Merry Christmas and Happy New Year!

The Lesser of Two Evils?

After much deliberation and a couple more appointments with various doctors I think I have made a decision. I am trying not to think of it as a decision between the lesser of two evils, but instead something beautiful. I have a love/hate relationship with technology these days, but I am grateful for what doctors can do. I am looking at this as an amazing opportunity for treatment and the fact that I will have a long, healthy and wonderful life after this is all said and done.

Ultimately my choice has become this: do nothing, or do radiation. Surgery has become this inappropriate and overly complicated form of treatment for my AVM. Because it is deep in my brain, and small, surgery might cause more harm than good.

So, radiation it is. It is technically called Gamma Knife Radio-Surgery. My most recent doctor’s appointment was this past Monday where I was more thoroughly informed of the procedure, which includes literally screwing a box to my skull (kind of like those Christmas tree stands), an MRI and another Angiogram all before going in and getting zapped with a million rays of cobalt radiation. Sounds gruesome, but I have come to terms with the idea.

Risks are what they are. If you think about it, any time something goes into your body that isn’t supposed to be there naturally, risks come with it. When I had my appendectomy, I was at risk of infection to my organs. When I had my angiogram I was at risk for a multitude of other issues. Take it or leave it, everything comes with a risk. Even walking down the damn street…Especially in my neighborhood with that old woman who drives the Mercedes.

That being said, this will all work out in the end. I can’t wait to not have crippling headaches, dizzy spells, and a small nagging fear that my vein might rupture at any random time. To deal with all of that for the rest of my life would be especially exhausting.
Now the fun begins! I hope to get this taken care of in January, and will have many pictures to share of the doctor drilling into my skull (Yay!) I wish everyone a happy holiday season full of good food, good family and peace above all else.

 

Wherever you go, go with all of your heart.

That is what my tea told me today.

Nothing more has changed, and my inability to make a decision still stands. I need to research doctors, procedures, and hospitals before I can make any rational decision. I am a woman of research, however the daunting task that lies ahead of me has been slamming me to a halt; face smashed up against a brick wall.

I went to yoga last night and tried to not think about everything, but it is extremely hard. I need to meditate, properly, just to clear my mind.

I had a deep desire to purge this weekend and cleaned out the closet, cleared off my shelves above my desk and started over. I think this is just a metaphor for my life. I need to clean out everything, and put it back together in it’s proper place. I love everything I have in my life, I just feel like it’s all disheveled.

That is it for now, I suppose. I am just in thinking mode, and not yet to the “doing” part of this whole process. With the holidays coming up, I have a lot on my mind, but I am keeping at it, and I know that everything will settle down here soon.

 

 

 

Radiation or Surgery?

I have been diagnosed with having an Arteriovenous Malformation (AVM) in my brain.

What started it all was this obnoxious wooshing sound I have had in my right ear for about four years. Finally on decent insurance, I decided to get it checked out. The noise was getting louder and I couldn’t handle it anymore. Turns out it is not related to my AVM and is something I will have to deal with for the rest of my life, unless I decide to repair the bone that is too thin near my ear. The miracle of everything, though, is that because of this sound, the doctors found something a tad more serious going on in my head. The wooshing sound is a whole other story….

So, in the past month I have undergone a slew of tests, including a hearing exam, MRI, MRA and an Angiogram to finally determine what is “wrong” with me. The AVM is deep within my brain in the Corpus Callosum; specifically called a Splenium AVM, which is towards the back of my brain above the Cerebellum.

To easily explain what an AVM is, one can basically say that it is an abnormal connection between arteries and veins. Your arteries are supposed to branch off into capillaries, and from there the blood flows to veins. What my artery is doing (in a small part of my brain) is branching directly to a vein, causing excess pressure on that vein, which it is not built to withstand. Over time this could deteriorate my vein and cause a bleed. Bleeds cause stroke, seizure, brain damage, and so on and so forth depending on how bad it is.

SO, I visited with my neurosurgeon, Dr. Tumalla at the University of MN on Tuesday. I got to see the images from my MRI and Angiogram and I have to say it was the weirdest experience ever. I saw the inner workings of my brain. I saw where I learned how to count, and my eyeballs. I saw EVERYTHING. He was very good at giving me visual perspective, such as “This image is like we are cutting your head from front to back”. Oh, neat, I think to myself. I saw how my blood flowed through my brain and saw the cluster of abnormal veins and arteries right smack dab in the center. Dr. Tumalla showed me how they discovered it and I could see that blood was flowing into a vein long before it should of been, signaling that there was a direct connection somewhere.

I now have the incredibly difficult task of deciding whether or not to get radiation or surgery. They both come with their risks and benefits. Radiation is a one time shot, and an out-patient procedure. I will have a box screwed to my head, have another MRI and Angiogram, and then undergo the treatment where they blast the center of this AVM with beams of radiation. I will probably feel a little gross for a few days and then have to wait up to three years to see if it has killed the connection my veins and arteries have made. Complications are stroke and seizures (life-long) and has, at most, an 80% success rate and could grow back.

Surgery is obviously an in-patient procedure with up to a 6 month recovery time. The dangerous part of this is that they have to move aside a lot of important parts of the brain to get to the AVM and if any complications arise during surgery, such as a bleed, the area will be hard to get to. If anything is damaged, I could permanently loose my peripheral vision. The success rate of removing the AVM is 100% and it will not grow back.

I know this may sound, and for lack of better words, like a no-brainer, but it has caused a lot of anxiety in my daily life. This is a HUGE decision. I will be talking to other doctors, and other people that have gone through brain surgery. My neurosurgeon recommended radiation, so I am leaning that way, but I am also concerned about the risks. I will be talking to someone who will be doing the radiation before I make any decisions.

Attached is a general diagram of the brain. Just so we are clear, I do not have the big C and it is not a tumor. It will not “spread” but it is something I was born with, so any super tiny abnormalities might grow with time. That is just something I will have to live with. I don’t smoke, I don’t eat Mc D’s, and I walk my silly dog two times a day, seven days a week. I like to think I am relatively healthy, so I hope that whatever I choose to do, I will come out on top.

More information to come. I just wanted to give everyone a general overview of what is going on. Let me know your thoughts and if you, or someone you know has gone through this. I would love to have the chance to hear others’ stories.