Allie's Story:

My name is Allie, and I am 29 years old. My chronic illness journey began just 2 short months after my 8th birthday. A virus set off Type 1 Diabetes in my body. Thankfully, because my father also had Type 1 my mother knew the symptoms and they believe they caught it within two weeks of onset. I spent 1 week in the children’s hospital in Atlanta learning just how much my life was about to change, all the new things I was going to have to do and endure, but it never could have prepared me for what all was to come.

All of the cardiovascular issues began at age 10...mitro valve prolapse, Afiv, SVT, my heart stops for up to 1.6 seconds; 1.8 seconds is catastrophic. I have worn more monitors than anyone I know. I’ve changed so many heart medications, eventually having a Cardiac Ablation at age 19. I’m currently awaiting a pacemaker.

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At age 11, I began my neurological journey. Myclonic jerks, which are common for just about everyone in their sleep, were happening to me on a massive and debilitating scale while I was awake. I was missing so much school which was leading to depression because that was the only normal thing going on in my life. I went back to the children’s hospital and started more medications. My EEGs at that time didn’t show any seizure activity but being as small as I was and on the dosage of medication I was on, they knew it was real. Later on however, I was diagnosed with Epilepsy and would have to deal with that along with high CFS levels that caused excruciating headaches that nothing could help.

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At age 13 I was diagnosed with what would probably be the thing that causes me the most problems and pain...it holds me back the most but also gives me the most drive to live each moment to the fullest on the good days. Gastroparesis; basically my gut doesn’t digest anything that is put into it, so I get severely malnourished and dehydrated leading to an electrolyte imbalance crisis. I was put on TPN, an intravenous form of nutrition for 3.5 years but I kept getting MRSA in my PICC lines, and the danger of the MRSA reaching my heart was too much of a risk so we had to change the plan. I now have 2 feeding tubes, one is called a Straight J, which is the one I get my formula through and the other is called a Gtube and this one I vent through (getting out any excess liquid I may drink, or acids my stomach creates.)

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These illnesses stole my childhood. I didn’t get to go to sleep overs. I ate my lunch in the classroom with the teacher because in the lunch room I would get busy talking to friends and not eat, which led to dangerously low glucose levels after taking my afternoon insulin. I spent more time in doctors offices and hospitals than I did with friends. Other children thought for a very long time that I was contagious and they wouldn’t have anything to do with me.

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As a result of all of this, life became too much to bear and my first suicide attempt was at age 13. Thankfully, I had a good team behind me who lifted me up and showed me how truly strong I am—that I have purpose in this life to help others who are coming along this same journey behind me. My life certainly isn’t easy...feeding tubes, feeding pumps, IV poles, insulin, breathing machines, more than 48,180 finger pokes, more than 34,675 insulin injections, more than 1,040 pump site changes, 19 Dexcom site changes, 7 feeding tube replacements, 14 medications, 6 Doctors (5 of them specialists)...but I don’t let this define my life. My health/medical situation doesn’t rule me.

 

I am more than this.

I am a minister, a singer, a prayer warrior, an artist, a friend, a sister, an aunt, an encourager, someone who loves to laugh and travel, and I can find the good in just about anything!

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Chronic illness may slow me down, but it can’t stop me and it certainly can’t silence me.

I can be a witness from anywhere, and I’ll be strong until the day I’m gone.