So many people struggle daily with illnesses that alter their lives yet because you cannot SEE them they go right on through life with everyone expecting them to be “normal”.  Kyleigh is a double edged sword.  While I am so thankful to not have people staring and making fun of her for having outward afflictions it also makes it really hard for people to grasp just how sick she has been and the struggles she faces every single day.  Now, having my own “issue” it makes matter even worse.  Mine is literally “all in my head” and throughout the Chiari community you will find that the number one sentiment is frustration due to lack of understanding!  Our families often don’t understand, our doctors, only other patients truly “get it”.  It can be a very isolating thing to have pain that you cannot get rid of and be expected to function like everything is totally fine when its not.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Kyleigh’s Invisible Illnesses:

VACTERL Association : Vertebrael Anamoly – Tethered Spinal Cord (Filum Terminale), ACM 1 (Chiari Malformation – 5mm herniation), Anal Atresia- Low Imperforate Anus with a Rectovestibular Fistula, Cardiac Anamoly- Congenital Heart Disease – AV Canal with Involved valves, ASD, VSD, Mitral Vavle Regurge, Tracheal Anamoly- Tracheal Bronchus (also known as Bronchus Sooey or Pig Lungs- found only in 5% of humans, makes it extremely hard to intubate without collapsing a lung), Esophageal Anamoly- Major GERD leading to Failure to Thrive, Renal Anamoly – Grade III Reflux in Left Kidney (70% function remains), Duplicated Emptying System with “Y” ureter on the Right (30% function remains), Single Umbilical Artery

Neurogenic Bladder – meaning Kyleigh has less than a 3% chance of urinary continence.

Undiagnosed Autonomic System Disfunction (causes her to have a hard time regulating her own body temperature and means that her body overheats/ become dehydrated EXTREMELY easily).

Intestinal Dysmotility (I have a large part of my colon that randomly dilatates and shuts down my GI system.  When that happens I get dehydrated FAST and need medical attention before I end up on TPN (IV food).)

30 Things About My OR My Child’s Invisible Illness You May Not Know

1. The illness I live with is: VACTERLS (+ some other random issues)

2. I was diagnosed with it in the year: VACTERL: 2006 (at birth), 2007, 2008, 2009 (seems like we find new issues every year)

3. But I had symptoms since: Birth

4. The biggest adjustment I’ve had to make is: getting catheterized every 4 hours.  After two longs years I STILL fight tooth and nail.  Mom and Dad are counting the DAYS until the Mitrofanoff.

5. Most people assume: I am normal and because I have done “ok” for more than 3 months I should be ready to pull out my g-tube and eat like a normal kid… Mom says my feeding tube can come out when I consume more than 200 calories per day by my own mouth.

6. The hardest part about mornings are: that I still cannot control my own bowels and morning usually bring a SUPER poop that floods my clothing, bed linens, etc and is still very much like infant poo.  Liquid in = Liquid out.  Enough said.

7. My favorite medical TV show is: Grey’s Anatomy (ok wait… that is mom’s favorite… )

8. A gadget I couldn’t live without is: My g-tube (mic-key button- feeding tube), and my 12 FR Catheters.  I would literally not be alive with out these things…

9. The hardest part about nights are: Overnight feeds.  I am still on a feeding pump overnight and no matter what Mom and Dad do I still cannot get above 60 ml/ hour or I puke up everything.  Sometimes I still puke regardless.  I have a lot of GI issues

10. Each day I take: Senna (to make my colon move enough to clean out the waste- otherwise I would never poop on my own… I just don’t have that ability), Prevacid (to keep me from puking up my food), Ditropan (for my bladder) liquid + patch (I have maxed out my dose and it still is not doing what it should, Large doses of Tylenol (to control my leg and other pain), Gentimycin Flushes (administered through a catheter into my bladder to keep my bladder from growing bugs and washing them back into my already ailing kidneys).

11. Regarding alternative treatments I: have enough to do with traditional treatments to look into other ones!

12. If I had to choose between an invisible illness or visible I would choose: whatever God gave me.  This is WHO I am and I cannot be anything but that.  Some days we are thankful for the “invisible” and some days it just complicates things.

13. Regarding working and career: I am either aspiring to be a gymnast or a dancer (or a monkey… depending on the day).

14. People would be surprised to know: I have had 15 surgeries throughout my life and spent more than a year’s worth of days in the hospital.  To look at me you would never know.  A lot of people also do not know that my cognitive ability is higher than average.  I have never needed therapies and have always excelled in learning.

15. The hardest thing to accept about my new reality has been: how to handle giving me as “normal” a life as possible also living with the knowledge that at any time one or more parts of me could just randomly shut down.

16. Something I never thought I could do with my illness that I did was: run and jump and have the energy to play with my siblings.  Because my heart was in such bad shape everyone thought that for the rest of my life I would likely be a “heart baby”… I showed them!

17. The commercials about my illness: What commercials?!? No one has heard of ANY of my conditions! My mommy has to teach DOCTORS how to pronounce all of my illnesses, then she has to explain and RE-explain them, then tell them to go look it up… this is statement made by a friend of ours (I ditto the statement!  Most of the time Mommy spend our entire admission educating the “flock” and nurses- unless its at KCH with Joe and then he knows the whole story!)

18. Something I really miss doing since I was diagnosed is: Spending more time outdoors… because of meds and part of my illness I cannot spend a lot of time outside.

19. It was really hard to have to give up: nothing.  Everything I do, I have really done since birth so I don’t know any different.  Mom and Dad would say sleep because of my cathing, meds and overnight feeds!

20. A new hobby I have taken up since my diagnosis is: twisting my mickey button around and around.  Mom gets made because she says that I need to get my dirty fingers off it!

21. If I could have one day of feeling normal again I would: ? Pee in the potty all by myself, eat french fries without fear of them blocking my intestines, play outside ALL day and not have to come straight inside to a cold bath.

22. My illness has taught me: more medical terminology than ANY 3 year-old has a right to know and understand… Also, how to NOT cry with shots, how to throw up and never even wake up from my sleep, how to put on a brave face even when I am scared, how to study people and things and not freak out until they start poking and to know that people in scrubs are not a good sign.

23. Want to know a secret? One thing people say that gets under my skin is: when people want Mommy and Daddy to hold me down against my will.  If you would just hurry up and do it I would be fine.

It get’s under MOMMY”S skin when people (doctors) say: “Oh, but she looks so GOOD!” Yeah, today.  But did you SEE her last night?  Did you notice that she STILL will not eat on her own and is nowhere NEAR being potty trained at almost 3.5?  Do you live with her?  No… if you would like to come take care of her for an entire you are more than welcome to and THEN tell me she is “just a normal kid”.  Mommy hates the word normal.

24. But I love it when people: brag about how pretty i am.  I love all things girly and princess!

25. My [Mommy's] favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11 ¹¹ For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

26. When someone is diagnosed I’d like to tell them: It will get harder before it gets easier.  There will be days when you want to quit.  You have no choice but to get up, dust yourself off and move on.  Change the things you can and let everything else go.  As a mom, YOU know your child best, period.  (Unless you happen to have a surgeon like ours that has been there since day 1 and then he might arguably known your child as well as you.. sometimes… LOL).  If you FEEL it… follow it.  Trust God, but keep a healthy questioning mind with doctors.  Sometimes the miracle IS the journey.

27. Something that has surprised me about living with an illness is: how amazing PEOPLE are.  I have more people who love and care about me than have ever MET me in person!  Wow… I must be special!

28. The nicest thing someone did for me when I wasn’t feeling well was: bring mommy and daddy a STEAK dinner when we had been in the hospital for a month!  I didn’t get to eat it but mom and dad said it was GOOD!!!  (thanks Stacy and Derrick!)  Also the care packages… nothing makes a girl feel good like a new pair of monkey pajamas!

29. I’m involved with Invisible Illness Week because: So little is known about ANY of my diagnoses!  If I don’t tell the world who will?

30. The fact that you read this list makes me feel: happy and hopeful that you will SEE me for who I am.  No more or less.

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