Showing posts with label Lyme awareness. Show all posts
Showing posts with label Lyme awareness. Show all posts

Thursday, November 28, 2013

Why I'm Thankful For Lyme Disease

At the beginning of this month I started doing the "thankful a day" thing on facebook, but for someone like me (who has a limited memory) it was hard to keep up with it.  Therefore I've had a lot of time to reflect on the last year and think of what I am thankful for the most, and prepare for my Thanksgiving Day post.  Honestly what I kept coming back to wasn't what I'd expect to be thankful for at all; Lyme Disease itself.

This past year has been a whirlwind of events, all related to my Lyme, and these events used to make me feel so super unlucky, but I've realized I wouldn't be the person I am today without all that's happened.

I'm thankful for Lyme Disease because it's made me see life in a positive perspective.  Before this last year, I was a very negative person.  Don't get me wrong, I know the reason I am negative is because of my neurological Lyme Disease, but this past year, I've learned to see the silver lining in all of it.  I've had Lyme & co-infections for 16 years now, and I got it at such a young age I honestly don't know what a "normal" feels like.  My childhood, teenage years, and adulthood "normal" was extremely negative.  I still have my negative bouts, there's no doubt about that, but Lyme has taught me and shown me that I'll be more happier if I try to pick out the positive of everything rather than the negative.  Instead of "I feel so awful" I now see it as "I feel bad, but I've had worse days, this is an improvement."  Like I said, I haven't completely dumped my negative feelings, they are still there, but when I'm starting to feel super negative and down, I do try and force myself to see the better.

I'm thankful for Lyme Disease for showing me the true side of people.  Everyone has gone through it, not just with Lyme Disease but with other invisible diseases, we've all lost friends and family who we thought would never leave us in this life.  The reality is that people don't understand, and sometimes are too ignorant, to see the true suffering and accept us for who we are and respect us for the suffering we go through.  I have lost some best friends who believe I'm "over dramatic" or it's simply not as awful as I make it seem.  Or even, that I'm making it all up.  I used to dwell on those, I used to try and make these people understand that what I'm going through is real, but I've learned that they are not worth my waste of energy, time and emotions.  You can't force people to care.  This also goes for worldwide Lyme awareness... I used to get so mad and so upset over these articles people post saying "Lyme isn't real."  I'd get so angry.  Yet again, you can't educate the ignorant and unwilling to learn, therefore they aren't the waste of emotion.  In the past year I've learned to ignore those articles, and ignore the stupid comments people make in relation to that.  I've learned that it's just not worth it.

I'm thankful for Lyme Disease because it's given me a chance to educate and support people.  I've always been a very compassionate, empathetic person and since leaving my job as a funeral director I've been aching to show my passion.  In the past year I've started a support group to try and help others like me, and I've always been able to open my wings and teach those who don't know anything about Lyme.  I've done several awareness events for those anxious to learn, and I'm very grateful that I've been able to have the opportunity to do so.

I'm thankful for Lyme Disease because I've made some amazing friends I wouldn't have known otherwise.  There are a couple people I've met in the last year that I consider family; these people I have so much in common with and are some of my best friends (my little sister and twinsy!).  If it hadn't had been for Lyme, I wouldn't have even known these people existed, which would have been awful because they have improved my life so much.



I'm thankful for Lyme Disease because I've learned to appreciate those around me.  I have had the same group of best friends since middle school, and luckily when I got extremely sick last year they turned around and showed me more support than I could even imagine.  I've always been one to appreciate my friends and family, but I've gained so much more love and respect for them that I didn't know I could, just because of their support.  It takes a lot for someone to be around when you're attached to an IV pole and act and treat you like everything is already, and I appreciate it so much.  My friends have become my savior in the last year, they are capable of holding me up when I was down.



 There are other things and people are I am thankful for that didn't come about because of Lyme, but are closely related to Lyme.  

First off my parents.  If it wasn't for them I would have been homeless this last year.  They have let me come back and live with them in the past year of extreme sickness.  I'm especially thankful to my mom.  Every. Single. Day. I did an IV, she'd spend the night before drawing on my IV bags just to make me smile.  She has taken me and has been to every single doctors appointment with me, has supported me so much, and has tended to me on my worse days, hand over foot.  She is doing everything she can to help me get back on my feet to restart my life.

I'm thankful for my brother, of course.  Without him I wouldn't have gotten the Lyme treatment I needed last year due to financial issues.  My brother supports me medically, has attended most of my doctors appointments in San Francisco and asks the doctor the difficult questions that I don't even think of.  Not only does he support me medically, he does what he can to try and make me feel like my life isn't wasting away.  He brought me to PAX Prime last year, which was amazing, and he's pushed me to have a lot of fun.

I'm thankful for my friends, my Lymie friends, my best friends, all of them.  They do so much for me.  Josie has been to every single support group meeting I've had, every single awareness event that she's been able to attend when work doesn't interrupt, and she's stepped up to basically be my nurse on cross country traveling trips.  She is always there for me, she is amazing.  Saby is my twinsy that I met because we both have Lyme Disease.  She's my go to person with the most bizarre Lyme questions, relationship advice, and just cat related stuff.  Since we've started talking, there has not been a day that we don't text back and forth.  Allison is my Lymie little sister, the little sister I never had.  She gives me hope.  Through everything she is gone through she is still capable to smile, to have a good time, and be positive.  I don't think I've ever seen her without a smile on her face, even when she's tired.  Her intelligence is so phenomenal, and her personality is so great.  Being around her, even when I feel awful, is so much fun and so full of laughs.  Allison's mom too, Kathryn, is equally as amazing as her daughter, she's a huge supporter and is Lyme fighter herself.  She fits in perfectly with our family, both her and Allison do!

To all of you I love you so much.  Thank you for being in my life, putting up with my sickness and growing and changing with me through the last year.  I couldn't have done it without you, each and every one of you, at all.  Thank you so much for saving my life.


Thursday, November 7, 2013

Doctor's Appointment Updates

I haven't updated about my medical situation in a while, I guess I've been very afraid of jinxing it, as silly as that sounds.

I have been off of IV antibiotics since August, believe it or not.  My body was no longer processing the antibiotics correctly and had also built an insane resistance to them.  As soon as Dr. G took me off of them, I started to feel much better very quickly.  It was great!  I got the energy to actually sew things, I traveled to Seattle and attended PAX prime with my brother, his fiancee and my friend Josie.  That trip was very difficult and I was in a bunch of pain but it was worth it.

In October I had my appointment in San Francisco with Dr. H.  He said that there was a sparkle in my eyes that he has never seen before.  Do you know what was cool?  On my symptom check list sheet, I was able to check that I had improved in basically EVERYTHING.  I almost took a picture of my symptom check list I was so happy with it, but then, ya know, there's things on there that I don't want the general public to see.  That appointment Dr. H told me that I could take my PICC out in 6 weeks.  I started an amylose free diet to help with a build up of neurotoxins; recent blood tests have shown that my neurotoxins are tripled the amount of 'normal'.  He also recommended that we did a ERMI Mold Test at home because I had some abnormally high mold factors in my blood work as well.  Luckily, our mold test actually came back with less mold than average house holds.  The bad thing is that that means that I am overly sensitives to molds.

Shortly after the appointment, the skin around my PICC line started to blister, tear, and become very weak.  It got very bad very quickly and I ended up having to get my PICC pulled before Halloween which was AMAZING because I got to go to Scarowinds (roller coasters and haunted houses) that I typically go to every year but had to miss last year, and was pretty positive I was going to miss this year.  My PICC, as of current, has been out for three weeks.  It's awesome showering like a normal person, I love it.  Unfortunately though, the insertion site has yet to heal, it looks the exact same as it did the day that I had it removed.  It's gross.  And embarrassing.  I hate it.

Today I had my phone appointment with Dr. G.  So far so good, sort of.  He feels I'm still doing good without the IV antibiotics, but he feels that it's coming back very slowly, so we are going to start hitting it again.  "It's" coming back means that babesia, not so much the Lyme, is showing back up.  He determined that when because my body is weak it's not producing antibodies STILL, and also that my body can only tolerate antibiotics in very short bursts of time.  I am starting with two new oral antibiotics, and stopping Minocycline since I've been on it forever.  I'm also being put on a blood thinner (does Lymie out there have experience with being on blood thinners?  I've never been, so this is my first time.)  Also a whole bunch of supplements.  So far no new PICC line, which is great.

I was pretty sure I was going to have to get a line put back in, so I'm really relieved that I don't have to.  This isn't that big of a win either, but instead of an appointment every 4 weeks, he's moved it to every 6 weeks!  YAY!

Thursday, July 11, 2013

Car Magnets!!

You know you want one of these rad car magnets.... sturdy high quality vinyl.  $6.00  Check them out here at my etsy shop!  


Alright everyone, ALL US STATES ARE NOW AVAILABLE to buy in bulk of $10.  Use the extra ones to give away to friends, or to sell as a fund raiser for yourself.  If you have support groups, take them to your support groups!  Help spread awareness for Lyme Disease in ALL states!! (Individual magnets are coming very soon.)  Click Here to Look at Them!  And Please Share!

I'm working on adding more things to the shop, including individual state car bumper stickers.  I'm trying to raise money for myself to help pay for the treatments.  These magnets are great for awareness and they stick on the car really well.  I've had one on this car since December, and they've never fallen off (okay once during a REALLY aggressive car wash.)  The one I've had since December hasn't even faded at all either!  Anyways, please share, help me raise some money and get this awesome magnet in return!  Thanks!

Friday, May 10, 2013

Personal Battle

This week has been very difficult for me. Earlier this week I went to see my doctor about a crunching noise I've had in my back for as long as I could remember. It isn't popping, it's literally at least 10-15 crunch sounds whenever I straighten my upper back and neck. Expecting only that my posture is bad, and an easy fix I was kind of blown away when the doctor told me I have a minor case of scoliosis. She said instead of my spine being curved, it is twisted at the base of my skull and upper back.

This is a difficult thing for me to swallow.  Especially all the research I did asking other lyme patients and though research papers, that this might actually be Lyme disease twisting and disfiguring my back.

This stress was packed on pretty high with my mom and I. Then yesterday my mom and I let something two incredibly ignorant and insignificant people put us over the edge. Being as upset as we were about the previous days diagnosis of a corkscrewed spine, a simple comment from these lying, trashy, selfish people, one who we have known forever as nothing other than a scamming attention seeker, really upset us both. The stress the situation put on me triggered a migraine worse than I've had in years. The last time I had a migraine of this magnitude, I ended up in the ER 6 years ago. Then I started vomiting. Non-stop, violent for 7 hours straight, until I could finally fall asleep. This morning at 6 am, I was in so much pain I could barely walked. My knees wouldn't move, my hips were frozen, and the pain throughout my body was insane. Luckily, after falling asleep again, I woke up in my normal range on the pain scale, but still am currently a bit nauseous. 

But I've learned a lesson. The reason people like myself get so upset by simple reasons is because we still grasp to care about these people. Even after everything the person who triggered all this stress has put me, and their family, in over the years, all the pain and hurt this person has caused, a couple months ago when this person called me with relationship trouble and needing someone to talk to I did not hesitate to offer this person any possible help I could give them. I am a compassionate person, as is my mom. We bend over backwards for people who never show gratitude, or even an equal amount of love. Lesson learned; those who aren't worth it, we need to accept they aren't worth it. These people will never care, they aren't heartfelt people, and they have very little to no compassion for anyone. Instead of striving to get people to love me who don't, this energy needs to focus on the people who do love me!

Last night I was in so much pain, I actually wished I wouldn't wake up. I truly actually hoped... But today I realize if I would have passed, it would have only been a mistake. I love the people who are there for me, and I couldn't possibly, now, care any less about the people who don't.


Wednesday, May 8, 2013

Scoliosis and Lyme



For the last several years I've been having issues with my back.  My upper neck and between my shoulders constantly hurts, and when I move my neck there is a bunch of crunching and crackling noises.  I finally went to the doctor today about it.

It turns out that I have a very mild case of scoliosis.  Not the type that my back is curved, but it is actually twisted at the top of my neck.  I'm starting physical therapy soon for it, but of course, it has me thinking a lot.  Is there a connection between Lyme Disease and scoliosis?  Of course there is a possibility that it has absolutely no connection at all with Lyme Disease, but I have this gut feeling that someway, somehow there is a connection in my case.

Recently the study came out that Lyme is the only living organism that lives off manganese rather than iron.  In order for the bacterium to survive in our bodies it consumes manganese.  So, what are consequences of having a low level of manganese in the body?  Here's the list:


  • Infertility
  • Impaired glucose metabolism
  • Diseases of the skeletal structure, and impaired growth
  • Pancreatic dysfunction
  • Elevated blood pressure
  • Atherosclerosis
  • Reduced protein metabolism
  • Reduced immune function
  • Ataxia
  • Selenium deficiency
  • Depressed activity of mammary glands in nursing mothers
  • Mitochondrial abnormalities
Basically, I already have a good majority of these symptoms, and so many fellow Lyme Disease patients share these same problems already.  It is not coincidental that so many of these symptoms parallel Lyme & Co-Infections.

Anyways, scoliosis can be caused by nutritional imbalances; such as a lack of manganese.

In conclusion, I am not a doctor, the most medical training I've had is through mortuary college, but I highly believe the evidence is monumental that Lyme Disease can cause scoliosis and other injuries and deformities with bones.  I do NOT believe that everyone with back problems have Lyme Disease though, just wanted to throw that one out there.

Also, another point my doctor made was that having so much pain which is caused by Lyme, your body will contort unconsciously to help cover the pain, which can cause deformities in the spine, and pain.

I'm going to continue doing research.  Of course none of this may not make sense to anyone because I have Lyme brain, but hey, it all makes sense in my head. 

Wednesday, May 1, 2013

Daily Lyme Facts

For Lyme Disease Awareness Month, I plan on posting a fact about Lyme Disease every day.  If you have a certain fact you'd like me to share, please let me know.  Be sure to follow me on Facebook to see all them each day as I post them!



























































Monday, April 29, 2013

In Memory of Those Who've Passed from Lyme

When I was first diagnosed with Lyme back in 2008, the first thing I did was google if you could die from Lyme Disease.  Everything I read said no.  Of course you shouldn't believe everything you read on the internet.  But when doctors, the people you're suppose to trust with you LIFE tells you, you tend to believe it.  But then those same people turn around and tell you Lyme Disease doesn't even exist.  It's all in our mind.  I know there are many others who have passed who aren't listed.  My heart goes out to everyone whose has passed, their families, and everyone who is suffering.  I know suicide is high among Lymies.  Stay strong.

Join the facebook memorial for Lyme Awareness Month to reflect on a remember those who have passed away due to Lyme Disease.  Lyme Memorial

People Who Died of Lyme Disease:


Michael Cunningham
Jon Pierre Lavallee, 46
Frank John Ferrigno, 48
C. Gordon Smith, 67 Moonface Bear, 35
James Roderick Mason
Kimberly Carol McEachern, 42 
Kathryn H. Brown, 85
Kim Wood, 48
Lynette McKinney, 64
CT Girl, 7 Years Old 
Brett Anthony Paul, 31
Joseph F. Lyons
Freida R. Gaultney
Preston H. Longino
Dr. Basil Roebuck
J. Howard Marshall Jr.
Isabella Radestock
Dr. Carole Alton
Martin F. Dumke
Dr. Sterling Edgar Walton
Sue Ellen Helms, 55
Jodi Lynn Swift, 35
Norman Jenkins Ryker Jr.
Julian B. Backus, 52
Joan Maura Friedenberg, 53
Steve Nelson, 38
George Nijboer 
Dr. Stephen Gumport 
Ann H. McChesney, 58
Clarissa Tilghman Yost, 95
Piet Van Leer, 82
Thomas W. Hughes, 51
JHopkins Autopsy #26488 
JHopkins Autopsy #46758 
Michael Hinsberger, 53
John Miskiv
Jonathan Bleefield
Craig Moon, 46
Florence Desillier
Shelli Grossnickle
Patrick F. Bogdanovich 
Darlene Joyce Deyo, 50
Robert Benton Senior
David Frederick Rosenau, 59
Patricia Bauman, 73
Amanda Schmidt, 11
Glenn Edward Killion, 36
Kevin Ring, 37
David Lee Thomas, 18
Miss Christina Marie Lambeth, 19
Kathy Cavert, 51
Dr. John Drulle
Gayla Diane Keyes, 52
Shirley Forsman
Everett 'Ed' Francis Ives, 53
Lynette McKinney, 64
Beverly Stanton, 53
Rena McNulty
Dr. William 'Bill' Nichols
Brian Pierson, 47
John W. McGrath, 75 
Larry Dolan, 56
Dillon Jamison King, 37
Deiby Ashkenasy, 23
Beth Coen, 46
Richard Robley, 47
Owen Klepper
Simuel L. Danny Hogan 
Elizabeth Burke Laubach Claflin
Kendall Wooten, 22
Ellen Agnes Loughlin, 56
Lori Lynn Widlund, 42
June Atkins, 77
Richard T. Mullin
Travis Wilson, 23
Professor Alasdair Crockett
Ellen Havican Watson, 20
Jesse Jonah Goldsmith Morgan, 35
Dr. Edward Stanley Arnold
Pat Pepper, 58
Gordon P. Grafton, Jr., 46
Dr. Michael G. Linebaugh 
Christopher Peter Thomas, 46
Peter Edgar Hare 
William Henry Boesche, 41
Robert Lee Runion, 77
Chester A. Mellen
Barry Horton, 55
David A. McHoul, 63 
Arlene DeLaurier
Jamie Forschner, 5
Dr. Jane Colfax
Sharon Ann Gross, 41
Joyce Marie Woods, 46
Jenny Umphress, 21
Scott Brazil, 50
David A. Butler, 73
Gilbert Thornton Perkins, 77
Theresa Jean Wells Clay, 45
Timothy Alan Selepec, 46
Catherine Klapak, 44
Dr. John Bleiweiss
Martha Bradley, 68
Gayle R. Hogan, 66
Paul Fjare
Larry Bennett, 50
Michael Wilson
Adam Rowett, 18
Gloria Jean Baglio
William A. ''Bill'' Mattson, 62
Catherine Klapak, 44 
James Sanders, 55
DeWayne Murphy, 34
Mike Thomas, 48
Barry Horton
Robert Michael Hanson, 49
Edwin John Parssinen, 86
Peter Anthony Banducci, 45
Diane Varsi, 54 
Randy Stevens, Jr., 6 minutes 
Stewart H. Dowell, 62
John Thomas Pitner, 28
Rude, Charles Lee, 54
Jerry Balistreri, 51
Stanley V. Piser, 90
James W. Loughran, 63
Doris Grade
Rick Fincham, 44
Ted Paul Richard Hoggard, 21
Terri Dahl Fishel-Hokit, 61
Brian Hirsch, 43
Hilary Skinner, 43 
Dr. Corey Brian Schmidt, 53 
Carlton Tucker, 38 
Kenneth Hagen, 39 
David Cole, 65 
Polly Todd
Richard Holtry 
Bonnie Borntrager 
Dana Hathaway, 51 
Paula Rae Lipkin, 52 
Robert Silverman, 45 
Ronald S. Ferris, 55 
Michele Rose-Clair
Sarah Minor, 44
Helenette Suchocki, 67
Tim Snow, 44 * 
Kevin Smith * 
Watt Carter
Susan Hawkes-Koons, 57
Theresa Nelson, 38 
Terry Allen Wood, 48 
Luther Conant, 51
Carmen Charles Casciani, 64
Alfredo Mathew Jr. , 59 
Ann Vesonder, 46 *
Karen Sullivan, 48 * 
Hartley Everette Jackson, 87 
Chantal Seaman, 62 * 
Donna O'Toole, 35
Katherine Alderson Crowe, 77 
Peter Vyselaar* 
Linda Fuller, 57
George Wendell White Jr. , 83 
John A. Every 
Stephen Dolan, 30 
James Andrew Anderson, 58
Dennis Stephen Johnson, 58
Richard Delano Thoner 
Philip J. LaMonico, 69
Guy Sumner, 66
Thomas Roberts
John Martini
Betty Jo Hemphill, 52
Betty Jo Loubier, 45
Gail V. Fichtl Walling, 49
P. Kevin Missett , 52 
& Elizabeth Graham Missett, 58 
Vickie Crawford, 55
Nina Bonderman Tarnofsky, 80
Balsorah Lamar Savely Miller, 64
Kimberly Ann Cooper, 37
Kathleen E. Schuyler, 52
Harry Hartner, 62
Vincent Sota, 47
Vincent Paletta, 61
Robert J. DiBattisto, 64
Robert J. Hoffman, 48
Jim Sazani, 59
Ginette Ellen Jones, 39
Barry Gordon, 52
Debbie Selberg, 52
David A. Butler, 73
Stacy Lynn Grow, 28 
Marion A. Hastings, 68 
Eleanor J. Kuhar, 81 
Leslie Clifford Kiggins, 77 
John N. Gamble
Benjamin O. Carter, 68
Michael G. Schulte, 69 
Robert J. Thompson, 49 
Stephen A. Herring, 42
Rebecca Rose Boone-Britt, 55
Rebecca Marie Jarrell Nichols, 50
Harry Phillips Sullins, 73
Thomas B. Brown, 83
Logan Kock
Frances X. Bender, 56
Imogene R. Schultz *
Bill Chinnock, 59
Teresa McGilley Redlingshafer, 72
Duane H. Johnson, 65
James Paine Koch
Eric von Schmidt, 75
Shirley E. Wolfenden, 75
Maggie McCorkle
Priscilla Moulton Shafer, 73
Judith Ross Boynton, 54
Deborah O'Connor DeMarco, 40
Raymond J. Krueger, 79
Holly Kulikoski
Richard M. Scott, 86
Donald J. Simpson
Germaine''Gigi'' Chamberlain
Christine M. Rizzo
Joseph Gregory Padner, 48
Lonnie Benedict, 45
Patricia F. Gerstner, 56
Frances L. Jacob, 75
Robert M. Silver 
Michael John Fried, 65
Anna Gorbsky Hladchuk 
Leonard J. Spooner
Paul Butler *
Samuel Butler *
Jane May Chapman, 45
Dr. Edward L. McNeil, 81
Dr. James Alan Yarbrough, 54
Col. Bryce H. Wagner, 62
Britteny Gallgher, 17
Robert Dawson, 55
Shirley Moore, 67
Steve Cheek, 52
Sarah Elizabeth Pawson, 41
Barbara Lynn Fitzmaurice, 56
Robert Chilton
Drusilla Davis Howey, 68
Jacqueline Lewis Hacker, 55
Suzanne Spear Lawrence
Jimmy Duarte, 70
Gustav R. Persson, 62,
Patricia Ann Holloway, 71
Mary Frampton, 76
Shirley E. Wolfenden, 75
Michael Coers, 62
Robert J. Hoffmann, 48
Harry Burke, 82
Rose - Karen Johnson Rose
Bruno C. Malvezzi, 87
Robert Earl Wicker, 56
Steven F. Wells, 45
Sheldon Willis "Tex" Stout II, 66
Joseph Vocino 
Lloyd Ebert, 101
Emily Powell, 15
Gregory Joseph Deneault, 45
Arda Manoukian, 50
Susan Starchuk, 62
Michael "Mike" Wilnau, 53
Lothar Bachmann, 65
John Douglas Powell, 64
Gianetto, Joseph F. 
Charlene L. Kaijala, 52
Mike Gregory, 43
Russell Paul Reach, 49,
Harry E. Waechter
Buck R Benoist , 66

For more information and obituaries of these beautiful people, please visit...

http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html