Thursday, July 3, 2014

What Is Normal Anyway?

I've always wondered what normal is... I know plenty of people who say normal is overrated or who cares about what others think of you? But even hearing everyone is unique or phrases like 'none of us are normal' does not change the pain felt from being a bit different from your peers. My entire life I have been different. In preschool, I was diagnosed with food allergies these were managed for most of my life by my mom with such grace until the fourth grade. Food became my body's enemy. I began to have allergic reactions to foods we once thought to be safe. It was then I was diagnosed with more food allergies. Suddenly, my already limited diet was further restricted. Fast forward to eighth grade, I had a really hard year with bullying due to my food allergies, this was concurrent with the further decline of my health. By the time my freshman year of high school came around, my health was rapidly declining. On November 16th, 2012  I had an NG-tube placed because I could no longer safely consume food. This feeding tube allowed me to get special medical food that did not cause my body to go into allergic shock. This is often called an elemental diet. The tube went into my nose down my throat and into my stomach. Obviously this no permanent plan, but it worked for a while. Eventually, I was diagnosed with Mast Cell Activation Syndrome. We finally had an answer to why my body would react to food without warning. As we started treatment for the condition we tried to reintroduce food into my diet. It was a trial and error process that unfortunately was not working, so on January 31st, 2013 I had a surgical feeding tube placed into my abdomen.
Following my surgery, my life was starting to return to normal besides the fact that I was unable I crashed hard I mean it. Following another surgery, I had in May my entire digestive tract began to shutdown. By the time my sophomore year of high school came around my body could no longer handle the brutal attacks upon it. It was then when I was admitted to the hospital where I stayed for weeks as we had many difficult conversations with health care professionals about my future. At the time was a terrified fifteen-year-old who had to come to terms with so many adult-like situations, so fast. I was given many new diagnoses and I was placed on TPN (IV nutrition) which was my biggest fear of all. I will always be thankful my doctors understood and helped me through that because my situation has been completely different from my brother's TPN situation. I began to thrive! I was finally able to leave the hospital! This hospital stay made us push for an overall diagnosis that would explain why all of this is happening to me. Although my health had declined much more rapidly than my brother's had we began to see many similarities between his failing health in comparison to mine. My brother, Tyler had been diagnosed around May of 2011. Finally, in November of 2013, I too was diagnosed with Mitochondrial Disease. It's a progressive, genetic condition with absolutely no treatment or cure.
Since my diagnosis, my health has continued to decline. One organ system after another has become affected by this disease. I know I am not normal. I am different, yes but that doesn't make me any less of a human than you are. I have had to fight just to get some sense of normalcy in my life. I continue to be a huge advocate for teens with chronic illnesses and feeding tubes. Those who come after me still need a voice in this world where it is lacking. Most people don't know about Mitochondrial Disease and I don't want another sibling to feel how I have felt as they watch their sibling die while nobody cares enough to make sure that those with this disease will one day have a treatment instead of being sent home to die.



Originally published: July 3rd, 2014
Modified on: September 24th, 2019

16 comments:

  1. My husband has a g-tube (after compromised swallowing issues due to oral cancer) and after one year is becoming "brave" enough to be more open about his tube with others. Not being able to eat like everyone else IS hard. He focuses, as you do, on being healthy. Without the tube he would end up with pneumonia again and again, which would eventually kill him. And he gets a MUCH better diet now that it is all blended. He can "eat" anything.
    You are a brave and well-spoken young lady. God bless you - and thank you for your blog!!

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  2. It must really suck not to be able to eat. I have a peanut allergy, but it's nothing compared to ur diseases. I hope u feel better.. GBY

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  3. You're very brave to share your story and experience through your blog. I'm so sorry for what you're going through. Thanks for sharing it with us, though. Our daughter has had health issues for years and finally got a Gastroparesis diagnosis last September. We're on a health journey we didn't expect and don't always understand. Thanks for helping me see my daughter's experience even better through another's eyes. You are in my prayers - keep on keeping on!

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  4. You're an inspiration to those living with chronic illnesses and even to those who are not. Keep being the positive person you are and keep writing about your experiences. I admire your courage and positive outlook on life.

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  5. Hi i seen your post on the feeding tube awareness page on facebook..... Firstly you are amazing for helping so many young people in a similar position as yourself Well Done :-D
    I have GJ tube my self i got unwell when i was 20 and nearly 5 years on i am still waiting for a diagnosis..... I hadn't heard of gastroparesis untill i seen your blog so i researched it..... after reading both your blog and the research it seems your experience is almost identical to mine. I will be mentioning this to my specialist!!!! Thank You ;) xxx

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    1. I hope I was able to help you receive a diagnosis!!

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  6. How do I contact you? I read your 10 things about chronic illnesses and I basically cried bc you said exactly what I've thought and tried to say for years. I have POTS and gastroparesis and other unknown chronic illnesses too; and I HATE meeting new people bc I know at some point I'll have to cancel suddenly on them yet I don't want to dump my whole story on them either. Id love to talk to someone MY AGE who GETS IT!! Seriously though your blogs made me so proud:)

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    1. Hi! My email is: m.shelley36@gmail.com You may email me whenever you get around to it! I would be more than happy to talk with you. I know several who have GP and POTS that I have met through several different support groups! I wouldn't mind connecting you with some of them!

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  7. Hi! I'm 23, and I have gastroparesis but it was set on by type 1 diabetes. I was 8 when I was diagnosed with t1d. I can and do still eat, but it's usually not very easy - however, having read this I wanted to say you're incredibly strong!!! I have to be very careful; but it's nothing compared to your day to day life I'm sure. Hang in there, it always gets better after rough patches and I'm glad you had a good experience in high school - you're going to do great in the future!

    Sabrina

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  8. Hi. My name is Laura, and I just had to say that you are awesome! You sound really similar to me: I'm 16, have POTS, EDS, Lyme, Bartonella, Gastroparesis, Depression, Anxiety, and have had a constant, 24/7 headache since August 12, 2013. I also have a port for IV antibiotics (and I get to use it for IV fluids at home too for the POTS!), and got my GJ mickey just since the end of April (I've been a tubie since the end of January). For me I'm a tubie because the GP is severe enough to cause immediate vomiting-even taking the few oral meds I have can be a struggle. Anyway, like I said, you are awesome! I also had a question for you: why did you get a J tube? I saw a picture where it looked like you kept the old stoma (as just a G?)...not sure if that's true. Anyway, I was wondering because I have had a lot of issues with my GJ flipping back up into the stomach (I'm on tube number 6 in just under 3 months!) and I had talked to my surgeon about getting separate G and J tubes, but he didn't think that was a good idea. I've been told if it flips up again I probably need to try getting a new stoma in a different place, but my surgeon would rather do that than place a J because he says it's easier when/if I am ready to get it out. Anyway, any thoughts?
    Thanks,
    Laura M

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    1. Thank you. I no longer have a port but a Hickman line which has been used for TPN, IV fluids, and IV meds. Originally I had a gtube placed for reasons other than GP. When I was eventually dxed with GP then I had a GJtube placed versus just a gtube. I got the Jtube because I was having multiple issues with the placements of the tubes and the tubes breaking. I needed to be sedated for each procedure and I have a horrible time with anesthesia.It took me a month to recovery from each procedure and I had a bad quiality of life. Yes I kept my gtube in addition to the Jtube. I use my gtube for draining when needed. If reverse motility is the reason why it keeps flipping back into your stomach changing the position really won't change anything unless you choose to put in a separate Jtube.

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    2. Okay, thank you. I originally had to switch from an NJ to GJ because the NJs were clogging and I had to be sedated to every change. Needless to say, I'm thankful for my GJ. Yes, there is a possibility of reverse motility, but at this point I don't know if I want to do the manometry test for it because that requires taking out my current tube and I've finally gotten one to stay in place for 5 weeks now! Anyway, we don't want to end up having another surgery because the replacement tube flipped after the test. I still want to do it, because if we found reverse motility there would be a few other medications to try, which might give me a chance to get at least a little better, but my mom doesn't think it's worth the risk.

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  9. How did you and your doctor decide that it was time to get an NG tube? I have had horrible GI pain for 5 years and I'm getting desperate. I'm 16 years old.

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    1. It varies from person to person. My doctors decided to go along with the NGtube after I failed trying to drink the elemental formula. I had lost 20 pounds in 2 months and we needed something because eating food and chugging Benadryl was not working. It also depends on what you've tried before going to the feeding tube and your diagnosis.

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  10. Hi Michaela,
    I don't know exactly what to say, but I've read some of your story. Thank you for sharing. Keep rocking your positive attitude, spreading awareness, and helping connect others with chronic illness to information and networks of people dealing with similar problems. You seem to be an amazing young woman. I hope you have successful treatments; you're doing a great job!
    Also, I love your freckles :)
    Have a great day!

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  11. Good for you girl I have same problems as you & keep going strong hope you do well & your sister does also

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