Posts Tagged ‘neuroloist’

New Cardiology break up, Muay Thai moves and a 5K… again, just go with it

October 24th, 2012 by Carrie, the Just Mildly Medicated gal

I will preface this by saying I am thankful to have been diagnosed by a wonderful Dysautonomia specialist and I have a fantastic local Neurologist. I am on medications that have made a world of difference for me but I still have some heart issues that have not improved with medication. I am on the quest to find a cardiologist that I can fall in love with to add to my team of current specialists.

When you’re hoping for a cardiologist that understands your condition and then a sub-specialist of cardiology has a nurse call you at 8:30 on a Monday morning because they have cleared this (new to you) EP Cardiologist’s schedule to see you the next morning you feel how exactly…?

For me it was excited and nervous. I was excited hoping he would have something new to add, I had assumed he’d looked over my records and treatment plan and had an opinion about something. I was nervous to hear just what the opinion was considering the nonstop talk of pacemakers I’ve had with doctors over the last 6 months. I was also nervous that this guy just wanted to “see” my crazy Dysautonomia and heart issues with no real input. I even warned friends I might get all crazy and muay thai his ass, just saying…

To add to the stress I had no one to watch my youngest, so I would be bringing a 4 year old who I knew would undoubtedly want to wear a princess tiara and repeatedly ask for snacks the entire time. I had the brilliant plan to give her my old jacked up black berry and pretend she was my personal assistant. I would say things to her like “Did we get those first 3 chapters back from the proofreader?” and “Can you move my lunch to tomorrow?” I even got off of Facebook to go work with her on her assisting skills. A few friends were concerned about child labor laws, I argued I was giving bright youngster an interning opportunity… tomato ‘tomahto’

So my assistant and I arrive and are escorted to a very nice office, okay so it was a regular exam room. I then I recite my medications and dosages to the nurse, hahaha, I actually have to hand a printed copy considering there is no way I could remember everything I take. I also do an ECG, BP lying down, BP standing up for 3 minutes (almost hit the floor) and answer the nurses 100 questions about Dysautonomia as if I were being interviewed. I cannot help but be a tad bitter, am I not here for you all to share your medical expertise with ME?

I already feel like this is going badly and am a tad emotional because I always get my hopes up and am disappointed more often than not by cardiologists. I have a track record of them thinking I am “interesting” but having little to nothing to offer me. This one proved to be no different. He comes in reading my records, a sign I have now learned means he has NOT read them before. He sits down and asks me what kinds of things I find hard to do with my condition. I answer with some of the basics, if I managed to do everything needed to get my kids to the park pushing a kiddo on the swing, because of the standing and back and forth motion, makes me so dizzy if I continued I would likely throw up or pass out. I also have a hard time with the aisles at the grocery store; between the fluorescent lights and walking I have to take a break every few aisles because of the dizziness.

He asks if there are things I want to accomplish that I feel this condition holds me back from. I answer a huge “YES.” Internally I say “umm yeah dumb-ass getting through a play date or grocery store trip would be good” but I refrain from bitter sarcasm, mostly because my daughter is sitting next to me all adorable pushing buttons on the black berry.

I think for a minute and say “Aside from big out of reach things I should be able to do a 5k. I am strong enough, I just pedaled 115 miles over 6 days on a recumbent stationary bike for Invisible Illness Awareness Week and I do Pilates twice a week. The upright jog/walking is just too hard for me to be able to do a 5k.” His dumb ass says to me “You should find a way to learn to accept your new limitations.”  All I can think is ‘Then why in the hell did you ask?’

Okay let me say I understand the intent behind this statement; I do not want to push myself to do something unsafe. I have a husband and 4 kids who need me. On the same note if you want to be on my team the answer needs to be “Let us see if we can figure out a way for you to do this.” I have just leapt over his desk and kicked him in the throat in my imagination, which I think means I have a strange smile creep across my face.

Yep, that move right in the middle… I was just glad I didn’t wear a skirt!

He continues by addressing the pacemaker comments all over my records. He says he would classify me as controversial and does not recommend I go forward with it. The way he says it pisses me off, as if it was my dumb idea or that I have been sitting around hoping for it. On the same note I admit some disappointment because if he said “it will help, let’s do it” I would have been scared but felt like we were doing something. He talks about infections and all the other reasons, which sound very logical.

He then stands up and extends his hand to me and says “It was a pleasure; your case is very interesting.” WHAT THE F@CK??… Nothing, not a new medication, or dosage… no idea, or even comment really. I gather my little girl and walk out (no hand shake). At the checkout desk the gal tells me he’d like to see me again in 6 months, I tell her “there is no need for a second date, it is over.” She looks up at me and smiles ear to ear, she either thinks I am crazy or I made her day.

So I cried on the way home, and off and on all that day. Not because of bad news but because this condition has more disappointment than I can handle some days. The next day I assembled a team of friends and loved ones, including a nurse familiar with my condition, to finish a 5k with me. There will be mostly walking and breaks are a given. I may set a record for the longest time taken to ever finish a 5k, but I will finish it.

November 4th

To pacemaker, or not to pacemaker, that is the question

October 14th, 2012 by Carrie, the Just Mildly Medicated gal

You may have just found me and need to catch up on things. If so, a quick recap- I have dysautonomia and it sucks. I have two out of four doctors who would like to put a pacemaker and Implantable Cardioverter Defibrillator in me, one who thinks it won’t help and a fourth who I haven’t met yet… and I listened to Phil Collins a lot last month.

The beginning of my pacemaker adventure and how Phil Collin’s played a big part, alright it was admittedly a small part, okay so it was more like my mind wandered…

30 things about my life with dysautonomia, geesh catch up would ya?!

Par for the course when you have something rarely diagnosed, doctors either ignore you or tend to give you a lot of attention while they try to figure you out. When they can’t figure you out they tend to break up with you  or stop making eye contact in which you have to break up with them. It seems very emotional but with no real connection, lots of oral given and received and never dinner or flowers.

Oh maybe I could start a Fantasy Football league only with physicians… I like it, Fantasy Physicians. All of the people I network with who have invisible illnesses can come up with their dream team of doctors and we will keep track of who actually knows how to treat us and score accordingly. Okay I digress…

Neurologist says: “Your brain is beautiful, EEG looks wonderful, however I couldn’t help but notice the ECG was crazy the whole time. It was wild to watch. I am calling your cardiologist this afternoon. I would say you might need a pacemaker and defibrillator for a quality of life improvement.”

Yes, he said my brain was beautiful. My heart is crazy, not my brain. TOLD YOU I WASN’T CRAZY… sorry didn’t mean to get all caps lock on that. I just got all excited…

Dysautonomia specialist says: “Your stress test showing non sustained ventricular tachycardia after 3 minutes in conjunction with your heart rate ranging from 50 to 180 when you’re sleeping concerns me. Have you been approached about a pacemaker and defibrillator?”

There are 3 categories you can fall into when being evaluated. You can be accepted, controversial, or not warranted. The two above docs put me in controversial and yes a very immature part of me was all ‘oh yeah I am so controversial’. The cardiologist, upon hearing these opinions and having already reviewed my case, orders ANOTHER 30 days of monitoring. Okay, I can be agreeable… this is a big deal and he is just wants to be sure. So I wear the godforsaken monitor another 30 days and turn it in.

After all of that I get a phone call from his nurse who relays to me that at this time I am ‘not warranted’. I did a small happy dance. I keep it small as standing up happy dances before meds can sometimes make me a little woozy. I tried to let the pacemaker idea go but it did stick in the back of my mind.

Yeah I knew it would never be that easy. Last Thursday I get a phone call from a nurse at the cardiologists’ office and they have another electrophysiology (EP) cardiologist who would like to see me. No joke, the nurse calls to let me know an appointment person will be contacting me “in the next few business days” to fit me in “as soon as possible”. It’s freaking THURSDAY AFTERNOON, you know I am not going to hear from them for another week! So now I am left to wonder what does this guy or gal think. Do I need the ole ticker kick starter… or did he or she see the word Dysautonomia and want me to come in so he or she can have me lay down and stand up while taking my BP and HR just so he or she can comment on how interesting I am.