Today, one of my best friends, lost his sister in a car accident. She was riding her bike and a car hit her. She didn't suffer, her heart just stopped. My mom took the phone call, and I instantly new something was wrong by her facial expression. An expression of disbelief and sorrow. The second that I found out, I didn't believe it. It was a disturbing day dream. That thought flew out of my mind quickly.
I'm a sobber. I sob during happy times, sad times, mad times, funny times. That's just how I express myself. Sobbing is what came next for me.
Mom helped me get dressed and into the car, and we were at the hospital within minutes. I got out and into my wheelchair and rolled over to where my friends were standing with the family who lost a part of their heart. We sobbed together, hugged each other, and tried to console each other. When time came to talk to my friend, I sobbed harder. I've never been faced with that situation in my 17 years of life.
I listened as everyone said "I'm sorry", "we're praying", "she's in a better place". Don't get me wrong, I believe all of that, but tonight I decided that that isn't always what the person who lost their loved one/friend wants to hear. At that time, they're not taking any of that in. Everyone is saying that to them, and it just becomes something they're used to hearing, and they no longer think about the actual words. I decided that I'm not saying that any longer. I want them to know that yes, I'm sorry. But I'm not going to repeat what everyone else is saying. "I don't know what you're thinking, but THIS SUCKS!" "If you want to scream, yell, cuss, or be mean to someone for a while. I'll be that person, and then hug you afterwards." "You call at 3am, I'll be awake and listening. Even if you don't want to talk to listen, we can sit there in silence together." Are just a few things that I'm going to say. Things that are really taken in during the emotional storm.
The girl that walked through the gates of heaven today was funny, smart, and kind. She was a friend, sister, daughter, and more. She was an incredible, talented, beautiful dancer. She was too young to die, and her family doesn't deserve to go through this, as any family would.
Rest in peace, J.A.R.
Thursday, June 24, 2010
Wednesday, June 23, 2010
To Doctors That Blew me off
Dear Pickle-headed rude Doctors (this does not include those willing to treat Lyme effectively),
I learned recently that before you start practicing medicine you take an oath to help people to the best of your ability. I'm sorry to inform you that you've broken this oath.
You probably don't remember me since you appeared to be too busy making vacation plans, talking to your realtor, or arguing with your wife that its her turn to pick up your twins from school. Let me remind you of who I am. I came to you with many symptoms...constant headache for a year, temporary facial paralysis, twitching, memory loss, cognitive problems, significant weight gain/loss, severe pain throughout my whole body, uncontrollable blood sugars, heart racing, trouble breathing, and intense fatigue to the point that I can't get out of bed.
I went a year or more with these symptoms and saw all of you specialists. Finally, my family doctor suggested that it could be Lyme Disease! Finally we found what was making me sick. After this diagnosis, I thought I'd be treated and move on. No such luck with you guys. "It's not Lyme, it's your hormones." - Cardiologist (heart was affected from Lyme) "There's nothing wrong with you except you're a teenager who doesn't want to go to school." - Audiologist (went to with hearing loss, cognitive problems, etc.) "You aren't taking your shots-- you must be trying to lose weight." - Endocrinologist (for wild blood sugar numbers) "You're a rebellious teenager and want more attention...keep your brain active and you'll feel less foggy." - Neurologist (headache, twitching, paralysis, pain, etc.) "It's in your head. There isn't any Lyme in West Virginia." - CLUELESS Infectious Disease Doctor (for all the symptoms). I could go on and on with more stories and mean quotes, but I feel you have gotten the point. I went to you for help, not because I wanted to waste my time or my parents' money.
I'd like you to know that I'm now going to one of the best Lyme-literate doctors in the world. He sees hundreds of patients a week, including some who fly in from around the world. Of all these people he treats, he puts just 20% of them on IV antibiotics. I (yeah, me!) am on a PICC line now receiving the treatment you should have given me. I'm one of those 20% of patients, meaning that I am worse than 80% of his other patients. Hmm, guess it wasn't just in my head.
Thank you for teaching me what a compassionate doctor acts like and how doctors shouldn't act. My brother is preparing to go to medical school, and has now learned how NOT to be like you. You all are booger brains.
Your friend - NOT!
Jenna
I learned recently that before you start practicing medicine you take an oath to help people to the best of your ability. I'm sorry to inform you that you've broken this oath.
You probably don't remember me since you appeared to be too busy making vacation plans, talking to your realtor, or arguing with your wife that its her turn to pick up your twins from school. Let me remind you of who I am. I came to you with many symptoms...constant headache for a year, temporary facial paralysis, twitching, memory loss, cognitive problems, significant weight gain/loss, severe pain throughout my whole body, uncontrollable blood sugars, heart racing, trouble breathing, and intense fatigue to the point that I can't get out of bed.
I went a year or more with these symptoms and saw all of you specialists. Finally, my family doctor suggested that it could be Lyme Disease! Finally we found what was making me sick. After this diagnosis, I thought I'd be treated and move on. No such luck with you guys. "It's not Lyme, it's your hormones." - Cardiologist (heart was affected from Lyme) "There's nothing wrong with you except you're a teenager who doesn't want to go to school." - Audiologist (went to with hearing loss, cognitive problems, etc.) "You aren't taking your shots-- you must be trying to lose weight." - Endocrinologist (for wild blood sugar numbers) "You're a rebellious teenager and want more attention...keep your brain active and you'll feel less foggy." - Neurologist (headache, twitching, paralysis, pain, etc.) "It's in your head. There isn't any Lyme in West Virginia." - CLUELESS Infectious Disease Doctor (for all the symptoms). I could go on and on with more stories and mean quotes, but I feel you have gotten the point. I went to you for help, not because I wanted to waste my time or my parents' money.
I'd like you to know that I'm now going to one of the best Lyme-literate doctors in the world. He sees hundreds of patients a week, including some who fly in from around the world. Of all these people he treats, he puts just 20% of them on IV antibiotics. I (yeah, me!) am on a PICC line now receiving the treatment you should have given me. I'm one of those 20% of patients, meaning that I am worse than 80% of his other patients. Hmm, guess it wasn't just in my head.
Thank you for teaching me what a compassionate doctor acts like and how doctors shouldn't act. My brother is preparing to go to medical school, and has now learned how NOT to be like you. You all are booger brains.
Your friend - NOT!
Jenna
Tuesday, June 22, 2010
Lyme List
No fancy writing. Not a bucket list. Not completely reaching for the stars. These are just some things that I would like to do after kicking Lyme's butt. Some things that would perhaps make me a better person, or maybe just some fun silly things to make life fun. Just a LITTLE list (I could go on for hours!)...nothing more :)
1. Go to NYC. The Big Apple. I missed the opportunity to go with my 4-H group for a weekend and long day trip with my Economics class.
2. Start a business that I've had in mind for 2 years. (Can't tell you what it is. People these days steal all ideas)
3. Start a non-profit group that I've had in mind for 15 years. (Can't tell you that either...sorry)
4. Go rappelling. I've wanted to do this since seeing a specific episode in the retired sitcom, "Growing Pains". I had the opportunity to go with 4-H, but had to decline unfortunately.
5. Live life like Mrs. Betty White's role, Rose, in "Golden Girls". Not the being blonde aspect, but the kind and innocent parts.
6. Run, dance, play the sports I used to, go for walks after rain and jump in puddles, play in the snow, etc. All of the physical things that I haven't been able to.
7. Take a life-changing mission trip. I need to have my eyes opened a lot more.
8. Teach Kara, my golden retriever, some fun and corny tricks.
9. Strengthen my faith even more and help out more with church activities. Maybe take a long kayak ride with Father Jack, my priest.
10. SUGGESTIONS?!
I have so many more things I plan on doing, but I'd like to know what you think I should do. Please, only appropriate comments haha :)
1. Go to NYC. The Big Apple. I missed the opportunity to go with my 4-H group for a weekend and long day trip with my Economics class.
2. Start a business that I've had in mind for 2 years. (Can't tell you what it is. People these days steal all ideas)
3. Start a non-profit group that I've had in mind for 15 years. (Can't tell you that either...sorry)
4. Go rappelling. I've wanted to do this since seeing a specific episode in the retired sitcom, "Growing Pains". I had the opportunity to go with 4-H, but had to decline unfortunately.
5. Live life like Mrs. Betty White's role, Rose, in "Golden Girls". Not the being blonde aspect, but the kind and innocent parts.
6. Run, dance, play the sports I used to, go for walks after rain and jump in puddles, play in the snow, etc. All of the physical things that I haven't been able to.
7. Take a life-changing mission trip. I need to have my eyes opened a lot more.
8. Teach Kara, my golden retriever, some fun and corny tricks.
9. Strengthen my faith even more and help out more with church activities. Maybe take a long kayak ride with Father Jack, my priest.
10. SUGGESTIONS?!
I have so many more things I plan on doing, but I'd like to know what you think I should do. Please, only appropriate comments haha :)
To be Perky or Not to be Perky...
I'm a perky person. Or so I've been told. "Perky Jenna", "Smiling Jenna", and "Happy Jenna" are just a few names that I've been called. People tell me I'm a positive person. I have always taken it as a compliment, until recently. I've been extremely sick for 6 years now. Diabetes, diabetic complications, constantly battling raging blood sugar numbers, and finally, Lyme Disease are just a few parts to the equation. I went at least a year before being diagnosed with the Lyme Disease and now it's in the late stages. Constant headache for a year, severe memory-loss, not being able to speak or read 90% of the time, severe fatigue, not being able to breathe most of the time, cry and scream pain that NEVER goes away (meds help to calm me down, not take the pain away), and twitching are just a small number of symptoms that I've had for the past year. When people ask how I'm doing, I say "pretty good" every time because it's become automatic. I thought that if people knew how I was REALLY feeling that they would think of me as "the sick kid". So, when I am occasionally around my friends (too sick to attend school), I act like nothing is wrong and my normal "Perky Jenna" self. Even around strangers I act like nothing is wrong. That's officially bitten me in the butt.
I'm in my 4th, close to my 5th month of intense IV antibiotic treatments, compared to chemotherapy. I'm sicker than a dog, and usually don't get out of bed except to pee. For that to happen, my brother has to carry me to the bathroom, my mom helps me, and I get carried back. TMI, I know, but people just aren't getting it. I'M SICK!!! My friends obviously don't take me seriously. I never get called, texted or emailed unless I contact them out of the blue. Usually they're too busy with their social lives to get back to me. No one stops by except my boyfriend. Most teachers at my high school claim that I'm faking, don't make an effort to help out in anyway, or say that I'm just trying to get attention. All of this because when I'm around them, I'm perky and don't complain. Since when do you have to whine all of the time and mope around to be classified as seriously sick?! I feel guilty telling people how I feel because I feel like I shouldn't complain...JESUS HUNG ON A CROSS! I can handle what I'm going through. BUT, I'm cutting the poop (crap is not a nice word)! I'm going to let people know how I really feel (without whining). I'm going to say "I feel like I'm dying", as many people with Lyme Disease and Diabetic complications do. I'll be happy and pleasant while doing so, but maybe people will learn that I am REALLY sick.
Lyme Warrior Princess
This was taken before my junior prom. With my nausea medicine and LOTS of over the counter pain medicine,I danced my bum off...but not without paying for it afterwards that night and the next day. My aunt, also the photographer (Suzanne Mellott Photography), named it "Lyme Warrior Princess" since I was showing my PICC line and proud of it!
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