Crap I am not wearing my costume

So the other day Rob and I are outside with the 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 Brayden 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. 

Rob 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 thats 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 Rob took Brayden 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. 

Pacemaker, Implantable Cardioverter Defibrillator and Phil Collins

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

Me: “Lots of writing, pledged 100 miles of pedaling for Invisible Illness Awareness Week and that’s going really well, 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 really 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 pre syncope. I know right, pretty sexy. But I think the biggest bit of information I can pass on is that I googled an interview Phil Collins gave and 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.

30 Things You Might Not Know About Me~ Invisible Illness Awareness Week 2012

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’ve had to make is:
I have gotten 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 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

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:
On good days it would be my recumbent bike (I guess this isn’t a gadget), it is in my living room and if I can pedal I will. My IPhone would be my actual 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 but with my symptoms I cannot imagine being a desirable employee. Some days I have a hard time with short term memory and recalling words, I have periods of time when I pass out frequently or have convulsions not to mention a lot of doctors’ appointments.


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:
Working out the way I have been able to recently seemed like it would never happen for me. In the beginning my first EP cardiologist didn’t want me doing more than 20 minutes of exercise a day and it was like old people sitting in the chair stuff. Made me feel like I was dying and I was gaining weight. After 4 more doctors and then finally visiting the Center for Autonomic Disorders I was told I can work out and work out well as long as I am reclining and supported, that has changed a lot for me. I am now doing anywhere from 6 to 12 miles on my stationary bike a day and have started Pilates.


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 keep up with my Blog 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.

The Amazing Briefs

So I am in line to buy Debbie Boone, the AMAZING metal chicken, http://boonefamilyupdates.blogspot.com/2012/08/metal-chickens-really-do-make-for-best.html, 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 unwear 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.

The sides of these beauties are the same length as my almost 4 year old shoes! Okay a big part of the humor is the size so I just have to give it to you, these are a size 8 people!!

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! (thats hotel carpet, I am not awesome enough to pull that off at home)

Sprinkler Time

Even on a bad day I can sit and watch the younger kids go crazy in a sprinkler. Its on pretty low for Lilly's benefit, the boys are nice to her (sometimes).


These photos crack me up because the pics represent them at the stage they are right now so well. Now I don't want to label them because as I know first hand having Sierra (almost 18) as soon as you think you have them down they'll throw you a curve ball. Sierra went from preppy cheerleader, to wearing all black emo to country (with some of the best boots ever!) and there were phases even in between those!

Back to my current analysis Lilly is a cheese ball and is more concerned with the possibility of being photographed than the activity (which is why she is often photographed), Parker is a ham, if it gets a laugh its going to be done again (and again) and Brayden, he wants to do everything and anything but hesitates because he has now learned that he can get hurt so he has gone from daredevil to umm...cautious.

Metal Chickens really do make for the best day ever

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. http://thebloggess.com/2011/06/and-thats-why-you-should-learn-to-pick-your-battles/

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 dad and Linda 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.

Lilly's birthday is around the corner so we have heard alot 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 Lilly exclaimed "I want this for my birthday"

I know right, pretty 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 Linda 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 Linda was responding to my dads text to her (something like "WTH did Carrie do Rob's freaking out") Linda responded along the lines of "honey don't be mad but I am bring 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!!! (and the whole our last name is Boone, but mostly the lighting up my life)

Introducing Rob and Debbie Boone!

I get this look alot from him

Debbie was already growing on him!
Now I will share some more of Debbie Boone getting to know us on our vacation.

reading our Blog to learn a bit about us

getting Lilly lovin

time for bed, I did say Debbie had to lay next to her,
I mean who lets a 3 year old sleep with a metal chicken on  top of them

She is already potty trained

the first photo of Debbie and I, we are road trippin home

Debbie's reaction to the chicken shack fast food place
it was rough

Debbie Boone home at last!!