Monday, June 30, 2008

Awesome = Awesome

So I must have picked up telepathy or something because Dr. New Guy is AWESOME!

I saw him this morning. His office is BOMB. No nurse here, he himself called me from the waiting room. How COOL! We passed his SIGNED Chicago Cubs baseball poster and I knew it was fate. He spent 45 minutes doing an evaluation and talking with me about what's been going on. He even READ my packet and looked at my test results. What a knight!

So, he ordered an MRI with contrast to see if my brain blood vessels are causing the problem on my right side. He changed my meds so I'll be transitioning to Topomax from Keppra over the next month. Finally! Love you Dr. New Awesome Guy!

MRI Wednesday at 1:45pm.
New Meds.
Come back August 4th.


Saturday, June 28, 2008


My bomb husband is in Portland, Oregon with the teens doing a mission trip. They've paid their dues and now get to chill downtown and enjoy the coast. I'm jealous and hate that this couch is where I am and will continue to be for now.

Miss you love.

Friday, June 27, 2008


Dr. Awesome's office called this morning and can get me in on MONDAY!!!

I see them at 9am, BOOYAH.

Wednesday, June 25, 2008

Grow up

What do you want to do when you grow up?

I asked an 8 year old last night and she said "a dermatologist" and she's going to OU and she's going to be a Tri-Delt and the president of the sorority.

Dang. Why can't I have such clarity?

I'm reading "Let Your Life Speak" by Parker Palmer. (Thank you Kendra) and it's a great book and exactly what I need to be hearing right now. Pick it up...

drs. are corrupt

I got my "complete" medical record from Dr. Idiot today. Which included the packet I had given him on my last appointment (which he didn't read) 2 written reports, and a letter stating that he understood I no longer want to be a patient of his so he is therefore discharging me from his clinic. Yo Doc, I discharged myself last Thursday!!!

Too bad his reports written regarding my appointments included false information.


Oh, and this was his closing line from his letter to the ER doc that referred me to Dr. Idiot. "Thank you for sending me such an interesting patient."

This guy will be hearing from me.

Sunday, June 22, 2008

no fun anymore

What's not fun:
-being driven everywhere
-sitting/laying/lounging on the couch
-having involuntary movements on my right side
-waiting for the doctor to call
-people only asking me "how are you doing/feeling?" and wanting to say "next question"
-the Red Box
-being tired
-flip flops, sweat pants, and t-shirts
-neighbor lady moving out and being really loud about it

What is fun:
-the Olympic Trials
-seeing my husband all the time
-critiquing television shows like I'm a really important person
-i found newspaper today so I can start painting again

What's your favorite color?

Friday, June 20, 2008

Dr. Idiot, Dr. New Guy, and Dr. Awesome

I went to my GP (Dr. Awesome) today with my Mom. Turns out I have a sinus infection so I'll be starting antibiotics today. We talked about my seizure situation, my experience with Doc. Idiot and talked about the new Neuro (Dr. New Guy) I'm set up with. My GP knows Dr. New Guy and said he is great and highly recommended him. So we feel really good about that and also feel good that Dr. Awesome believes my concerns are warranted, but aren't severe enough to warrant an emergency appointment. I am on the cancel list with my new guy so there's a chance I could get in before my real appointment on July 10th.

For those of you who thought we would take Dr. Idiot's lame explanation lying down, you can forget it. We requested my complete medical record, cancelled all my testing and all future appointments and said "we will not be back." PEACE OUT Dr. Idiot and your stupid psychological testing! Oh and then I slandered his name for 2 hours on every website where I could rate/review Dr. Idiot. I felt really good after that.

In sleep news, we got our first night of restful uninterrupted sleep! It felt GREAT and I feel pretty good today, even after an outing to Dr. Awesome. PROGRESS!

We're remaining hopeful that we'll get this all figured out! Thanks for all your help and suggestions in the last few posts. They've been very helpful and have brought us peace and comfort.


Okay, TV news real quick, these are the best shows you're probably not watching:

Anthony Bourdaine: No Reservations (Travel Channel) -this is on every day
Black Gold (TNT or TruTv) -Wednesdays nights
Flipping Out (Bravo) *but you should already know about this show! -Tuesdays at 9pm
30 Days (FX) -Tuesdays at 9pm
How It's Made (Discovery)-every day at 11am, 11:30am, 6pm, 6:30pm.

Edit: Those who saw the original post and comments,

I think the issue was misunderstood and blown out of proportion. I think what could have been a good adult conversation turned into name calling and judging based on chosen vocabulary words. For those reasons, I've edited my post and deleted all comments. Hopefully next time a fair and respectful conversation can occur. And I sincerely apologize to those who were offended by my using "gay" as a descriptor of quality.

Thursday, June 19, 2008

It must not be hard to get a medical license...

Well...we're done with my current Neurologist. I will be on the phone in the AM begging for my second opinion to be moved up to ASAP. Carl and I went with our guns loaded, complete with my full medical history, a seizure diary from the last 5 weeks, an evaluation from the Keppra website regarding my side effects and reaction to the meds, a calendar detailing how I've felt and all medication I've taken in the last 5 weeks, a form from my employer for him to sign...amounting to about 12-15 pages. 45 minutes after our scheduled appointment, we finally got called. My blood pressure was 110/70, my heart rate was 100 (i know...I was nervous.) Doctor comes in and sits down and says "So how have you been doing since I saw you last?" And I'm kind of shocked because I've called him twice, I requested my appointment be moved up because I've been having more frequent partial seizures, do you not remember any of this?! So we start explaining what it's been like and acts like he didn't know any of the information...which I had already told him! I talk about my right side being affected and the side effects and I keep referring to the diary I've kept of symptoms and what's happened when and he doesn't look at even one page. He asks me if I've had stress as a child or trauma, I say no, he asks if I've ever seen a counselor before, I say yes, I describe when, he starts interrogating me about why I sought a counselor. I stated because it was free in college and I was encouraged to participate in it, and I developed a friendship with my counselor and it progressed over 3 years. He kept asking what problem/issue I had to start going. And I said I didn't and he would not believe that I went to counseling for no problematic reason. I stated "well that's your opinion and I don't agree." and he answered "that's everyone's opinion." WHAAAAAAAT?!!?! So somehow, we get around to him recommending that I have psychological testing because my "episodes" could be "conversion" which is where a person internalizes problems/issues and it manifests itself in physical reactions or outbursts. I think it is pretty ridiculous for everything I have and am experiencing to be chalked up to psychological issues. So in the beginning of the appointment I was having seizures...and by the end, I have psychological issues. So, when checking out we requested my medical records and requested my further testing be held off for at least 2 weeks so that I can get a second opinion.

I have never felt so illegitimate, so offended, so overlooked, and overwhelmed that a medical professional...who's specialty is people's brains...could treat me, a patient, with such disrespect and show no concern for the fact that my right side feels dead and out of control.

So, I'll be calling my other Neuro in the AM to move up my appointment. Luckily I kept copies of everything I gave the doc so I can pass it on to someone who will READ IT, and hopefully we'll get some answers to this nonsense! We are super frustrated and disappointed that today didn't go better.

Wednesday, June 18, 2008

doctor doctor, give me some news

Faithful Followers of my Blog:

We go back to the Neuro tomorrow. We're packed and loaded with lots of papers, research, and questions to attack him with as soon as he opens the door. :) Sort of kidding...

Things have stabilized a little...but we do feel that my condition has definitely worsened, especially since the upped dosage in meds. As frustrated as we are, we are anxious for answers and solutions to whatever it is that's going on. From speaking with family and friends, the consensus is that everyone is concerned and believes that something bigger is going on that just me having a freak seizure. It's hard to trust a doctor you don't like, especially when you're being told that something doesn't sound quite right with your treatment. I never threw a fit when my pediatrician (who I definitely saw until I was 22) went through the motions and wrote me the beloved Amoxicillin prescription for my ear infections, sinus infections, etc. But people, we are talking about my brain here, not my ears. I would like to think that if I were a neurologist, I would take my job so seriously that I would limit my number of patients, surgeries, etc so that I had time to research, analyze, and be nearly 100% sure that what I was telling my patients was reliable information. Now, there's a reason I'm not a doctor, especially a neurologist, so I know I can't really speak into something I have no frame of reference for, but...I really want to believe that there are doctors out there that really care for people and the illnesses that ale them. But I may also know better.

On a lighter note, a friend suggested I start a TV critic blog since I'm watching so much TV these days and have an increased knowledge about shows, commercials, etc. I may not start a new one, but I may start sharing my expert opinions on this blog. I'm sure you'll be looking forward to that. One of my FAVORITE shows started last night, "Flipping Out." Jeff Lewis is a real-estate investor with a major case of OCD. The show is hilarious because he has extreme expectations and requests. This is a tribute to Jason Smith: "I want to change my drink order…Ideally 70% lemonade, 20% punch, 10% Sprite. If they don’t have fruit punch, do like 85% lemonade and 15% sprite. If they don’t have lemonade, do 85% punch and 15% sprite…or 7-Up." The show is on Tuesdays at 9pm on Bravo (67 for those of you with Cox Cable.) It started last night, but you can catch that episode on Tuesday at 8pm if you want to be caught up for the new one at 9pm. People, laughter can add up to 8 years to your life. This show will help you meet your quota. If not, I'll give you your money back.

Sunday, June 15, 2008

oh it's all the same

Well, I've had 2 more of the partial seizures...yesterday and today. I'm still having a lot of tingling and flash numbness and feeling weird on the right side. My doctor's going to get an earful from me in the morning. I'm tired of feeling this way and there has to be something else they can do besides allow me to feel the way I feel. So I'll be trading my $50/medication for potentially some more expensive medication to make me feel crazy and nuts. It's hard to believe it's already been 5's gone by fast.

Oh and I have a sunburn from my lovely time in the sun yesterday...during which I wore 50spf and spent a gay $9 on Coppertone continuous spray sunscreen only to have it give a neon pink stripe on my right leg, neon pink shoulders and back. Love it.

In other news, Ice Road Truckers, season 2 on the History channel started again and I got to catch up tonight. Booyah!

Friday, June 13, 2008

sleepy sleep

We finally had a night of restful sleep...and feel fairly good today. Hooray! Small victories!

Monday, June 9, 2008

job meeting results

We met with my supervisor and the county director today. We've agreed on leave without pay from now through July 7th (my next appointment) and I can apply for a longer period of leave if necessary at that time. In the meantime, we will be seeking a second opinion from another Neurologist and hoping to get my medication under control. We talked about jobs available for me in the future and got the information we needed to help make our decision when it is time. Our issue now is making sure my benefits continue while I'm on leave so that I can continue to get my medication and doctor visits without us spending a small fortune. Thanks for your prayers and support during this uncertain time! We moved back to our apartment last night and endured our first night back since the seizure. We didn't get tons of sleep, but it went better than expected. Keep us in your prayers, there's a lot of decisions to come in the coming weeks and months. We are hopeful that each day will continue to get a little easier as time unfolds.

Thursday, June 5, 2008

more updates

Well, last night I had 2 focal motor seizures which are simple partial seizures with localized motor activity. Basically, my right arm moves about freely for 10-15 seconds without my control. This is not new...I've experienced it for 10-12 years of my life but didn't know it was a type of seizure. We discovered it was in the ER when I explained what had happened over the course of my life and the doctor said "that's a type of seizure." Cool. So, my medication was supposed to take it down from 90% to 5%. Well apparently I'm part of the 5%. I spoke with my Neurologist again this morning and he's having me take an additional dose to see if that helps. He stated I could move up to as much as 1000mg/ 3x a day. Right now I'm at 500mg/3x a day.

In other news, I meet with my supervisor and others on Monday at 3pm to figure out my work situation. Please pray that this will go smoothly and they will be super understanding of our situation and willing to be flexible while we get these seizures under control. Carl will be going with me.

Keep us in your thoughts. Each day has brought a new challenge and we are getting weary. We love you and appreciate your care and grace to us.

Wednesday, June 4, 2008

test results: (drumroll)

Well in a less than 3 minute conversation with my Neurologist, he told me that the EEG and MRI showed my brain to be normal and showed no abnormal activity. SO! I'll be maintaining my medication until July 7th when I go back for a re-evaluation with the Neurologist.

This was a pretty frustrating phone call for many reasons but mainly because we didn't get much information and have to move forward hoping that we don't have to go through this again. I'll be meeting with my Supervisor probably next week sometime to talk about the future of my job. Hopefully we'll reach a happy medium on what my job will need to look like in order for me to continue and the timeline for when that will be.

I'm still settling into the medication which could take up to a month for me to adjust. Thanks so much for your prayers and we continue to covet them as the future is just as uncertain and we are continuing to make adjustments to this "new normal."

Monday, June 2, 2008

Bummer in the Summer. Literally.

OETA is public television's best shot at the Discovery Channel. Except it sure repeats a lot. And it has Reading Rainbow instead of Deadliest Catch.

I look forward to the summer so that my skin can soak up the sun...except that I have so little energy that by the time I put my swimsuit on, I need a nap. So I tried that lotion that fools people. Well it's made me nauseous all morning. bomb husband is picking me up for a field trip to our apartment so I can watch cable tv for the afternoon. Yesssssss!

No test results yet...still waiting for my phone to ring.