Archive for October, 2012

5 Confessions of a Mildly Medicated Mommy

October 28th, 2012 by Carrie, the Just Mildly Medicated gal

Mom confessions have taken the Blogosphere by storm and hey when a trend works a gal might as well jump on it. It’s cathartic and funny… and as long as I chose well no one will call child services, it’s all good.

I had a few to pick from this week, that’s right I have no shame.

1. When my 4 year old daughter askes to play I try and hurry up and offer to play house and I will be the baby so I can stay on the couch. If she gets her idea out first I am trapped in front of a doll house for an hour, or playing Candy Land.

2. I put on Tinker Bell on so I could go work on my novel…  I surfed the internet the whole movie.

3. Speaking of Candy Land…

I don’t feel too bad about it either. The pieces are in a zip lock back in the next drawer, if anyone helped clean up it would be a quick find.

4. When my four year old said a potty word my 18 year old daughter and I cracked up and said “biotch” way too many times for our own entertainment that afternoon.

(My personal fav)
5. We were out to dinner at Texas Roadhouse and my kiddos make me crazy cracking nuts on the table. I am forever telling them to make sure the shell goes on the floor. Right as music went quiet I very loudly praised my 9 year old saying “THANKS FOR TAKING CARE OF YOUR NUTS UNDER THE TABLE.” It was pretty spectacular, I had no idea he could turn that shade of red.

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.

Possible Pace Maker and Phil Collins, yes there is a common thread, well to me anyway

October 11th, 2012 by Carrie, the Just Mildly Medicated gal

You: “So what have you been doing lately?”

Me: “Lots of writing, I am working on a novel, I also pedaled 100+ miles for Invisible Illness Awareness Week, oh and I just finished up a 30 day evaluation for a potential pacemaker and Implantable Cardioverter Defibrillator.”

Okay so no I don’t carry on that conversation stopper too often but some of you have heard it. Now that people know what is happening to me these conversations are happening more often and they are becoming more real somehow. It’s a hard reality but I do believe it is emotionally healthy to be able to discuss these things instead of holding them in and worrying alone.

Being a 36 year old wife and mother of four and to find out you have something wrong with you is a little unexpected. It took about 6 months and 3 doctors before I really believed something was really wrong, I mean I knew I wasn’t doing well but I had a hard time with hearing I had a rarely diagnosed condition. I mean it’s rare so therefore someone else should have it right? Dysautonomia didn’t roll off the tongue and it didn’t help that the local medical world thought I was “interesting” and hearing multiple doctors say they are familiar “but have never treated anyone with dysautonomia” wasn’t exactly comforting.

I heard doctors come together in the room with me and say things to each other like “maybe a ventricular ablation would be the best route” and “pacemaker defibrillator combo would control brady and tachy” but I thought they had to be over exaggerating and considering they rudely acted as if I wasn’t right there I did the same right back to them. If I ignore it then it clearly wasn’t said, maybe they were talking about the other lady in the next room. I took the meds they gave me and went to the next specialist, and no longer see that first cardiac team. It was a hard break up but I think they got over me. After hearing this whole ablation, pacemaker and defibrillator talk a few times with them I thought it was at least something in my future, as in 15 years maybe.

My new team of doctors, whom I trust with my life and that is a good way to feel about your doctors, brought up Implantable Cardioverter Defibrillator (ICD) and possible pacemaker combo my eyes welled up with tears. Okay here is where you have to know me, I can cry on at the drop of a dime if I want to. I am really good with dramatic effect. When I do not want to cry and it happens I am humiliated. I would rather poke myself in the eye with a pencil and say “I am sorry I seem to have something in my eye” then cry in front of anyone. The real pisser here is there were no pencils around that I could find.

The first step is apparently calling everyone. My Neurologist, Dysautonomia specialist and Cardiologist are all in cahoots at this point. The ironic part is they hook me up to an event monitor. Now I have been able to hide these pretty well but seriously I have been monitored more often than not over the last year, a gal only has so many shirts that hide 3 sticky tabs and wires, not to mention the pager style recorder. I can’t help but feel like at this point we need to just decide. The fact is though there are medical guidelines and we need to be certain I fit them and that this is the best route for me. They’ll look at my year of on again off again monitoring and decide if I fall into accepted, controversial, or the not warranted category. I am putting my money on controversial, I mean come on it’s the only fun category being offered.

The fact that the ICD was first used in humans in 1980 and approved by the FDA in 1985 was emotional to hear in itself. I mean how can I be old enough to need something made (in my mind) for an old person’s heart that was approved when I was 10. Let’s get real here, we are talking about a medical breakthrough for the heart approved when I was listening to Madonna whisper moan about feeling like a virgin and I had no real idea what she was rolling around the floor for. Seriously, I am still trying to decode Phil Collins Sussudio and I am still crushing on A Ha while they were all animated and running around trying to Take On Me. I wanted to stand up and say “I am really sorry fellas but I am way too young for this”. Instead I sat still and focused on sucking that watery mess back into my eye balls.

So the deal is IF this is even the route we go; the Defibrillator will have an antitachycardia pacing that will have a preset number of rapid fire pulses (fire pulses, because this sounds like something you want in your heart) these pulses, in all hopes, will stop the ventricular tachycardia when it happens. If it does not the ICD preforms its own cardioversion, which sounds like a lot of stuff happening to a heart just having a hard time figuring out how to beat appropriately. The pacemaker does pretty much the same but opposite, when my heart rate drops too low it will send an electrode to get things going again. At this point I am wondering if I am going to be walking around jumping from all this internal shock therapy and thinking with my awesome cane and internal shock therapy I will be able to avoid unwanted conversation with people for the rest of my life, note to self on possible bright side.

As you can tell in my mind I have already gone to a different place. It shifts a tad to a self-centered place, a place where I am still struggling to be a hot mom, for godsake I have a babysitter for this appointment to talk about pacemakers.  This just cannot be happening right now. I’d rather be at Pilates, or reading or writing or ANYTHING. And what the hell is Phil singing about in Sussudio. I actually come close to asking the doctor, I mean he obviously knows everything, then decide there is little chance he is cool enough to really know and then I might get a referral to a whole different doctor.

So now I sit and wait, knowing even if we do this it does not cure my Dysautonomia but will help regulate my heart rate so that I am more able to do things other people my age do without much thought. Like walking the dog or going through every aisle at the grocery store, I know I am really thinking big here. I will still deal with my big obstacles of Chronic Fatigue and Orthostatic Intolerance not to mention convulsions and presyncope. I know right, pretty sexy.

I think the biggest bit of information I can pass on is that I search google and found an interview Phil Collins gave. The Sussudio lyrics are based on this schoolboy crush on this girl but he doesn’t really know her so he calls her Sussudio. I personally hope everyone who pined over someone plays this song today and sings it really loud. Life is fun that way.   Sussudio

 

 Pacemaker Part 2

Pacemaker Part 3

To Jack Ass Events and future resume bullet points!

October 6th, 2012 by Carrie, the Just Mildly Medicated gal

You know how sometimes when you go out and you end up spending all night telling drunken men “back off my ass”? Well this has a whole new meaning as in my current life it was a mule not my ass and they were elementary children not drunken men.

Back to the beginning… I am the Room Mom for a 1st grade class at an awesome school. During the fall most schools have a Fall Fun Fest, as does this awesome school. As Room Mom part of the gig is to make sure volunteers are at your assigned event to help kids and give out a prize. So I get the email that says what class is in charge of what event, last year my class did the cake walk… this year I was taken back when I read “mule ride”. Yes, mule ride. I am thinking are you freaking kidding me, they must know I’ve never gone to a PTA meeting at this school… I am pretty sure they have it out for me.

After my coffee and a good amount of Facebook time I relax into this. I begin fully embracing the mule ride gig. I have dubbed it the Jack Ass Event (not to the parents in the class just everyone I know on Facebook) I am thinking there has to be a story to share here and people are signing up to help out, so really all is well.

I am then talking to a friend of mine who started a career after college and has no kids so we have occasional ‘trade lives with you’ envy not to mention most of my best stuff is not quite understood to its full potential. Conversation goes something like:

Me: I have Room Mom stuff to get done today.

Friend: I don’t even know what that means.

Me: Room Mom, you know, I organize stuff for the classroom… you know cool, awesome super mom stuff.

Friend: Oh.

Me: I am like a career Room Mom, totally putting it on my resume.

Friend: What would you put?

Me: Well I am in charge of the Jack Ass Event at the Fall Fun Fest. Can you believe it? Not sure if I am on the mule ride shit list with the PTA or if the Donkey Show is like a big promotion.

Friend: You should NOT put that you are in charge of a Donkey Show on your resume, or a Jack Ass event for that matter.

Me: Why not? I think it’s a huge responsibility, okay maybe not but who else will have that one their resume, I’ll be memorable…

Friend: OH MY GOD! You have no idea what a Donkey Show is, do you?

Me: No, but as of this moment I am sure it’s some terrible and sexually deviant act though isn’t it? I am searching on Google now… and I will forever know that you knew all about whatever this is all about.

Friend: No, you shouldn’t do that…

Well I totally did and that’s one stop I won’t make when I take my awesome vacation to Mexico that I am not really planning on taking anyway…

So the Jack Ass Event was pretty kick ass and the mules were gigantic, which I know they are not the same as donkeys it still made me feel sorry for some strange people in Mexico…

You know you want to share this… go on…
Join the Blog and then “like” Just Mildly Medicated on Facebook… all the cool kids are doing it…

Crap! I’m not wearing my costume!

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

So the other day Hubby and I are outside with the 3 little kids. I am sick and feel like hell but watching kids play is good stuff so I drag my half alive butt off the couch bring the blanket with me considering I am in 2 day old PJs which as any self respecting mother knows would not include a bra.

Happy laughter, kids running… okay its been 5 minutes I am ready to go back inside and slowly die of phlegm induced drowning when I see our younger son (6) on his scooter. He has no helmet and is literally flying down the hill on our street. I stand up braced for whats about to happen and BOOM. He falls and bounces off the side walk, into the grass and finally the street. Rob was closer and made it to him and was carrying him back to our yard to evaluate the damage.

Hubby looks up at me and says “Let me have the blanket to put under his head” of course I immediately hand it over as we are looking him over. Anything to make my falling apart boy more comfortable as we make sure he is still in working condition. Until I realize all the neighborhood kids are here, and in our hood that is like 20. I am in a tshirt and yoga pants with no freaking bra on and my blanket is under my crying child’s head. Now I know this shouldn’t matter at that moment, and it didn’t.

It did start to matter when Hubby took the little man wrapped in my blanket to the truck and off to the after hour clinic to be sure he was as okay as our combined medical experience seemed to believe him to be. I was left with the said 20 kids in my yard asking if I thought he was going to be okay. Now I am left there thinking ‘great, not only was my kiddo not wearing a helmet but now I am that lady they will have horrifyingly burned into their brains who stood in the yard with no bra on’. Now before you call child services on me I think I did okay at covering the whole thing(s) up.

The kiddo is fine, some band aids and Motrin and he is as good as new. I got on the computer that night and found this gem by accident and just couldn’t resist sharing.

Amazing Briefs

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

I love my Amazing Briefs!

So I am in line to buy Debbie Boone, the AMAZING metal chicken and remember that I am in need underwear. I decide to make a mad dash to grab some instead of my normal ‘forget it, I will get it next time’. Which my normal ‘forget it’ is exactly why I NEED to get underwear. So I hold Lilly’s hand and wheel our cart to the back of the store (because Murphy’s Law is very accurate in that what you forget is furthest from you at the time of the remembering.)

Now mind you I am road tripping so I am not looking for anything of the raise an eyebrow variety here, just a 3 pack of good ole fashion cover your ass underwear. So I look at sizes, see mine and grab em. Whoohoo I bought everything I needed, which yes included a chicken and underwear and I am very pleased with my awesomeness.

We get back to the room and I tear them open and all I can say is… well… nothing I was laughing to hard…

First to really understand the world of womens’ underwear you have to really take a look at the sizing…

apparently you measure an area in which most normal underwear will not have contact with…

Okay so back to my underwear… the Amazing Briefs as I have now dubbed them…

SERIOUSLY, I am not a big gal and this was the “correct” size. As I threw the packaging away I can only assume I have purchased something along the lines of ‘ridiculously bloated size blah blah with extra giant torso”. I know right, I didn’t know they made those either.

I have found the Amazing Briefs can give you a gangster housewife look because your pants can be on appropriately AND have 3 inches of underwear showing from the top! (that’s hotel carpet, I am not awesome enough to pull that off at home)

Metal Chickens make for the best day ever!

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

A big thank you to Jenny Lawson, without you I would never have known the joy a metal chicken can bring into ones life. If you are not privy to the amazing story of Beyonce (the chicken not the singer) please catch up on whats going on in the world. Link to The Bloggess… click it!

So its been over a year that I have occasionally envied the joy that Beyonce has brought to my favorite blogger and her family. Her Blog was shared with me and I have passed on the laughs through Facebook to others. My husband never checks out the amazing things I am saying on Facebook so he has no idea about Beyonce.  I have seen many MANY chickens during this time, some HUGE some tiny, but I knew it was not the right chicken for my family. When its right you just know it!

For a little back story; slightly stressful 14 hour drive to meet my parents for a long weekend ‘vacation’ with 3 of our 4 kids. This ‘vacation’ is a bit stressful as its actually a highly anticipated road trip to see an amazing specialist for me. With all of our vacation activities underway, and my doctors appointment done, the girls went for a mani pedi date and light shopping while the guys took the boys and did boy stuff.

My 3 year old daughter’s birthday is around the corner so we have heard a lot of talk of the things to be included on the birthday list over the last few weeks, all being super girlie items as she is super girlie. Imagine my surprise, and no joke literal swell of emotion, when she exclaimed “I want this for my birthday” at a row of METAL CHICKENS!!


I know right, BEYOND awesome!

Could it be, here… away from home with a car over loaded with clothes, toys and snacks… could this be my metal chicken?? So we looked at several (yes they had several) and chose the chicken that spoke to us, not literally because that would be crazy.

So with my step mother slightly confused but laughing non the less (she obviously isn’t checking out all the amazing things I post on Facebook either but she has dial up so I am able to forgive) I collected my chicken and went to pay. At the register I remember I needed underwear and ran back and grabbed some but that is a whole different story (that I have every intention of sharing).

I was so happy that I just knew it was time to share my joy.

The last line is awesome because as I sent the text to Rob that at least I didn’t get another dog my step mother was responding to my dads text to her (something like “WTH did Carrie do Rob’s freaking out”) she responded along the lines of, “honey don’t be mad but I am bringing home a dog, its not very big and it will be fine.”

Linda’s dog

I just want to take a minute and say this was a great day. So the guys are freaking out on the way home. My dad is telling Rob there is no way I got a chicken and Rob is telling him, umm yeah it could be likely. Linda and I are breaking out into laughter repeatedly as I rehash Beyonce’s story and have to hold back from over Jenny Lawson sharing (can’t help it she is just that amazing).

So then a name, “What’s in a name? That which we call a rose by any other name would smell as sweet.” as we know a name is a big deal, it has to be perfect. Debbie Boone, because this chicken is lighting up my life!!!

Debbie checking out our Family Blog
She is already potty trained!
I promised her we have more food at home
She checked out some Olympic action
Debbie and I in our first photo together.
Traumatized by a local chicken shack drive through

30 Things about me and dysautonomia

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

Invisible Illness Questionnaire

1.The illness I live with is:
Dysautonomia (dysfunctional autonomic nervous system)  Dysautonomia is different for different people, for me I suffer with Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, non-sustained Ventricular Tachycardia and Orthostatic Intolerance. Dysautonomia is considered both a chronic and progressive invisible illness, which means it’s with me for good and can become more impairing. It took a long road to get pointed in the right direction. I owe a lot to The Center for Autonomic Disorders

2. I was diagnosed with it in the year:
2011

3. But I had symptoms since:
2005

4. The biggest adjustment I have had to make is:
I have had times where I’ve been much worse this last year and I have to plan my day down to the details. One of my main conditions is Orthostatic Intolerance, I am basically not that tolerant to being upright so if I overdo things, my heart goes berserk or I have convulsions. I have to rest before and after everything. On a doctor visit day I can’t also go to the grocery store or I will for sure have some type of episode.
Using a cane has also been a huge adjustment; if I have to do something that requires a lot of walking and or standing I am much better off using a cane even though I am not 100% comfortable with it yet.

5. Most people assume:
I would guess that most people know how much I love exercising so they would never think I have a chronic debilitating illness. I am very limited to what I can do, I use a recumbent bike while hooked up to a heart monitor and have started Pilates with an amazing instructor who is also a nurse. I cannot stand up for long without passing out or having severe tachycardia so these are working for me.
In general people assume if you look healthy you are. For people who know I’ve been going through something I would say they assume I have a heart condition when it is actually that my autonomic nervous system is not functioning properly.
Another big assumption is that it must not be too bad because I went to the mall or worked out etc… I have good days, great days even, great weeks at that. Then I am in rough shape for a while. I don’t know ahead of time how it’s going to be or how long it will last but I assure you I do everything I can when I am good.

6. The hardest part about mornings:
The worst is having to start the first wave of medications on an empty stomach (barfaroo) and the kids wanting breakfast right away while I am still light headed and nauseated from meds. It is also very aggravating on Sunday morning when I set up my meds for the week, it takes forever and if I have a convulsions… well it’s a lot like a jigsaw puzzle I didn’t sign up to do.

I took this to show a friend how organized I am

then I did a jigsaw puzzle, or as she called it I had medicinal confetti

7. My favorite medical TV show is:
I used to love House, not a huge medical TV kind of person

8. A gadget I couldn’t live without is:
My IPhone would be my gadget, I am thankful to be chronically ill in a time when I can still have communication and entertainment even when I am stuck at home.
(Yeah Facebook and Words with Friends what would I do without those links to the world??!!)

9. The hardest part about nights:
Waking up with tachycardia or trying to fall asleep with Bradycardia, both are scary feelings.

10. Each day I take:
13 prescription medications (some are the same RX multiple times) and 2 over the counter meds. So that is 105 pills to potentially spill, yes I am still stuck on that. That was a crappy day.

11. Regarding alternative treatments:
I salt load but will need salt tablets soon (barf), I have to try and drink about 80oz of water a day, I have some compression wear for my arms and legs and when other friends with dysautonomia find something that works I give my doc a call. Exercise is so important; I now try to clock some exercise time in even on the bad days.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible, the downfall is definitely harder to diagnose because for a long time doctors thought I was fine because I wasn’t symptomatic at the moment my vitals were taken. As it progressed it became painfully obvious to my doctors. The benefit was I still had time to deal with the diagnosis with my family and decide if and who I wanted to share the information with.

13. Regarding working and career:
I am a stay at home mom and have been since 2003, I volunteer a little less each year and that makes me sad. I loved being in the class room. I always planned on going back to work, I have to say it is harder to imagine what I will do and how I will go about it but I also cannot imagine limiting myself.

14. People would be surprised to know:
One of the big motivators to come all the way out of the ‘invisible closet’ is because I am on the wait list for a cardiac service dog!!!
I think people also would be surprised to know 2 of my 4 kids also have an invisible illness. Oh and my family drove 14 hours for me to go to the Center for Autonomic Disorders… who goes 14 hours to a doctor?

15. The hardest thing to accept about my new reality has been:
I have had a hard time slowing down. My personality and chronic illness don’t go well together. In my head I want to organize, workout hard, volunteer, do projects go to the park and have lunch with friends. Making the choice of what the priority is for that day, and really not even one on some days, can get me down.

16. Something I never thought I could do with my illness that I did was:
I clocked in 116 miles on my recumbent stationary bike for Invisible Illness Week last month!

17. The commercials about my illness:
I have a whole documentary http://youtu.be/8UPMYNkm6Bc  CHANGES: Living with Postural Orthostatic Tachycardia Syndrome. POTS is just one of many was Dysautonomia can surface.

18. Something I really miss doing since I was diagnosed is:
I still miss exercising the way I want to instead of the way my body will tolerate; I miss just walking the dog without wondering if I am risking an episode of non-sustained V Tach. Also going out certain places without fear; like to a concert (which I am planning to do soon) is scary. What if I pass out, what if I have a tachycardia episode it is a lot of worry.

19. It was really hard to have to give up:
Being able to ‘do it all’ in a day. I remember getting the kids ready for school, getting dressed, volunteering, working out, hitting the store making meals and hanging out with friends. It’s a slower pace now and never enough time or energy to do everything I want. I also can’t drive for 6 months after losing consciousness, that’s a LOOOONNNGGG 6 months!

20. A new hobby I have taken up since my diagnosis is:
I wouldn’t say I took them up because of my illness but I try and write as often as I can and I read read read! I love keeping track of my books at Goodreads.com and discussing books with friends.

21. If I could have one day of feeling normal again I would:
Take the little kids to the park and play hard in the morning, have lunch and go shopping with Sierra all afternoon then meet up with my husband and friends for dinner, drinks and dancing!! (I really hope to have a good enough day for all of this soon)

Outside the Doctor’s Office

22. My illness has taught me:
If you feel something is not right with your body and you do not feel you are being heard or given medical information and support that fits how you feel keep looking. Don’t settle. I have also learned no matter how real your illness, no matter how obvious your symptoms someone, and maybe someone you love, will doubt you are really ill.

23. It bothers me when people say:
It bothers me when people ask questions from a place of doubt instead of curiosity.  ‘You can’t be that sick, you exercise so much’ or ‘you were fine last year (last month, last week)’or if I am having a bad day or week saying it’s because ‘You worked out or went shopping etc.. and should have rested when you had a good day.’ For some people I can never win.

24. But I love it when people:
I love it when people ask questions from a place of concern for me or curiosity about Dysautonomia. I also love getting calls, texts and playing Words with Friends, it cheers me up, makes me feel social. (Big props to my WWF peeps) I love a call for coffee or lunch, I love getting out of the house and if I can I will!

25. My favorite motto, scripture, quote that gets me through tough times is:
I did as much research as I could and I took ownership of this illness, because if you don’t take care of your body, where are you going to live?
Karen Duffy

26. When someone is diagnosed I’d like to tell them:
You will find a new normal

27. Something that has surprised me about living with an illness is:
That I am beginning to find a new normal.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I am blessed to have a few.

My best friend having a natural balance to not treat me any differently but cut me some slack.

An old friend taking some time to catch up and be able to be concerned but still make a joke or two that lightened the weight of it all a little.

My husband explaining to me what Dr. Thompson told us; that my fatigue is not the same as when a healthy person is tired and that my body has a need to rest. Then he did the dishes…again

29. I’m involved with Invisible Illness Week because:
Dealing with this alone, for me, is not the option I thought it might have been in the beginning. I want people to know what is happening to me, why I might have to cancel plans and why I have so many limitations. I also want to let people know that Dysautonomia is very real and not many doctors are aware of what it is, or how to treat it. Awareness is crucial.

30. The fact that you are reading this list makes me feel
Validated and supported, really I couldn’t ask for more.