Sunday, November 8, 2009
Friday, November 6, 2009
So I was thinking..
The doctors diagnosis that it was all in my head just doesnt makes sense to me.
Let me know if it makes sense to you after reading this.
Because it was all in my head all this happened:
I was diagnosed with mono and my spleen was enlarged.
I had 2 surgeries a little over a year apart and both I had to stay overnight because I was passing out/throwing up.
My mouth was covered in white sores and my incesion was infected after gall bladder surgery.
I went from doctor to doctor trying to get help.
My heart rate was abnormal and I had to go to the cardiologist.
I missed 2 proms from different schools I was asked too.
I had group B strep in my kidney twice.
I had very high positive for crohn's which fit all my symptoms.
Ive had countless bloodtests not only the past 2 years but since March.
I have bruises, little scars and those blood clots from blood tests/IV's.
Ive had hundreds of IV's the past 4 years.I spent 6 weeks in the hospital missing fair and my friends/family.
I had a colonoscopy and talked my mom into it because I wanted some answers so I could feel better.
I had ice all over my joints plus a heat pack on my stomach the whole time in the hospital.
I collapsed in the hospital and couldnt move.
I stopped breathing twice in the night because of drugs in the hospital and I was oh so sick but I quit bugging the doctors to take me off of the med I knew was doin it because I didnt want them to think I was more crazy.
I got so skinny/weak that I was shaking so bad for weeks.
I was throwing up everything I ate.
I had 2 NG tubes (tubes down the nose) one they ripped out so fast I threw up some blood.
I let psychatrist tell me that I had to leave the light on all day (even though I had light sensitivity and just wanted the blinds open) and that I couldn't nap at all (even though I was so sick) and did what they said.
I have an exam by not 1 but a few doctors at 7 AM and they woke me up after I had finaly gotten to sleep to push on me/examine...SO PAINFUL!
I let a doctor tell me that I had to spend a whole day outta bed and not even look at it til it was bedtime even though I was big time drugged and so sick and shaking because I was so weak because I lost 5 pounds in 2 days...and 40 in 5 months from throwing up.
I swallowed a pill camera and they sent me home saying I couldnt bend over until it was out in case it punctures me.
Sadly thats not even half what i've been through but I think you get the point.
How can I ever have so much trust in a doctor again?
Let me know if it makes sense to you after reading this.
Because it was all in my head all this happened:
I was diagnosed with mono and my spleen was enlarged.
I had 2 surgeries a little over a year apart and both I had to stay overnight because I was passing out/throwing up.
My mouth was covered in white sores and my incesion was infected after gall bladder surgery.
I went from doctor to doctor trying to get help.
My heart rate was abnormal and I had to go to the cardiologist.
I missed 2 proms from different schools I was asked too.
I had group B strep in my kidney twice.
I had very high positive for crohn's which fit all my symptoms.
Ive had countless bloodtests not only the past 2 years but since March.
I have bruises, little scars and those blood clots from blood tests/IV's.
Ive had hundreds of IV's the past 4 years.I spent 6 weeks in the hospital missing fair and my friends/family.
I had a colonoscopy and talked my mom into it because I wanted some answers so I could feel better.
I had ice all over my joints plus a heat pack on my stomach the whole time in the hospital.
I collapsed in the hospital and couldnt move.
I stopped breathing twice in the night because of drugs in the hospital and I was oh so sick but I quit bugging the doctors to take me off of the med I knew was doin it because I didnt want them to think I was more crazy.
I got so skinny/weak that I was shaking so bad for weeks.
I was throwing up everything I ate.
I had 2 NG tubes (tubes down the nose) one they ripped out so fast I threw up some blood.
I let psychatrist tell me that I had to leave the light on all day (even though I had light sensitivity and just wanted the blinds open) and that I couldn't nap at all (even though I was so sick) and did what they said.
I have an exam by not 1 but a few doctors at 7 AM and they woke me up after I had finaly gotten to sleep to push on me/examine...SO PAINFUL!
I let a doctor tell me that I had to spend a whole day outta bed and not even look at it til it was bedtime even though I was big time drugged and so sick and shaking because I was so weak because I lost 5 pounds in 2 days...and 40 in 5 months from throwing up.
I swallowed a pill camera and they sent me home saying I couldnt bend over until it was out in case it punctures me.
Sadly thats not even half what i've been through but I think you get the point.
How can I ever have so much trust in a doctor again?
Tuesday, November 3, 2009
Hopeful
I started this blog because my best lymie friend Nicole told me it helps so much just to express herself so I thought I would try it out. Also I can keep people updated on how I'm doing.
The past week has not been a good one. I have been more than usual tired. When I wake up I feel like I just ran a marathon. Some nights I can only get 1-3 hours of sleep and the pain makes it impossible to sleep anymore, and some nights I can sleep 12 hours and feel like I hadn't slept at all and that I could just sleep all day. But I cant live my life in bed everyday.
There is over 70 horrid symptoms I have from lymes disease. It would be SO much easier to live with all the symptoms if i could just get rid of the one most horrible one which is the burning/horrible aching/etc pain all over that makes it so I cant even move if I dont take my pain medicine...But that just takes the edge off so I can push through. Its so hard push through this.
I can laugh and smile and be happy but inside I am in soo much misery. I wish people understood but they wouldnt get it unless they got lymes disease and I dont want them to because it really really hurts. This lyme quote is so true: "You dont get it..Unless you get it. But I hope you don't."
It is so hard to stay positive. I have been so much more positive since I met Nicole who is my age and has lymes disease. She helps so much just to talk to her because she knows exactly what I feel like. We love the same stuff and everything. She is SO much more positive than me. YOUR MY HERO NICOLE!!!!
The past week has not been a good one. I have been more than usual tired. When I wake up I feel like I just ran a marathon. Some nights I can only get 1-3 hours of sleep and the pain makes it impossible to sleep anymore, and some nights I can sleep 12 hours and feel like I hadn't slept at all and that I could just sleep all day. But I cant live my life in bed everyday.
There is over 70 horrid symptoms I have from lymes disease. It would be SO much easier to live with all the symptoms if i could just get rid of the one most horrible one which is the burning/horrible aching/etc pain all over that makes it so I cant even move if I dont take my pain medicine...But that just takes the edge off so I can push through. Its so hard push through this.
I can laugh and smile and be happy but inside I am in soo much misery. I wish people understood but they wouldnt get it unless they got lymes disease and I dont want them to because it really really hurts. This lyme quote is so true: "You dont get it..Unless you get it. But I hope you don't."
It is so hard to stay positive. I have been so much more positive since I met Nicole who is my age and has lymes disease. She helps so much just to talk to her because she knows exactly what I feel like. We love the same stuff and everything. She is SO much more positive than me. YOUR MY HERO NICOLE!!!!
Sunday, November 1, 2009
Just Some Quotes..
"10-15% of those with the Lyme bacteria progress to chronic Lyme disease." - Pat Smith, Lyme Disease Association Website
"These [chronic lyme disease] patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations from normal--among the most deviant of any chronic illness." - Mark S. Klempner, M.D., NIH Extramural Lyme Study Principal Investigator, January 1998.
"Lyme is an enigma. While the debate rages over proper diagnostic and treatment procedures, patients get sicker and some even die." - Pat Smith, LDA, NY Assembly Hearing Nov, 2001
"I am struck by how Lyme disease never seems to act exactly the way it is supposed to, how each individual seems to respond differently to the spirochete." - Polly Murray, "The Widening Circle"
Look for more great info and links on Lyme Info @
"These [chronic lyme disease] patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations from normal--among the most deviant of any chronic illness." - Mark S. Klempner, M.D., NIH Extramural Lyme Study Principal Investigator, January 1998.
"Lyme is an enigma. While the debate rages over proper diagnostic and treatment procedures, patients get sicker and some even die." - Pat Smith, LDA, NY Assembly Hearing Nov, 2001
"I am struck by how Lyme disease never seems to act exactly the way it is supposed to, how each individual seems to respond differently to the spirochete." - Polly Murray, "The Widening Circle"
Look for more great info and links on Lyme Info @
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