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June 29, 2012

The Time Has Come to Let Go of My Pride - Updated

The time has come where I address the button to the left of this post: the DONATE Button.  I have had it on here for a little while, but really struggled with asking my friends and loved ones to support me financially through this battle.  I have been blessed with amazing parents and a wonderful husband are all helping me with these expenses.  The truth is, this disease is rediculously expensive!  Right now I am averaging $3-4,000 each month on items that are supplements, homeopathic treatments, detox methods and so much more (none of these are covered by insurance) oh, and plus my portion of my co-pays.  Many people ask me what they can do to help and I just ask for prayer...well now I am humbly asking for you to consider donating to my medical expenses AND as always to keep me in your prayers. I wish money was not a concern with my treatment, but that is just not the case.  This disease is known as "rich man's disease" because you have to have a lot of dough to afford the proper treatment.  For more on this controversy and understanding the associated expenses I encourage you to watch the documentary on Netflix, Under Our Skin.  I have had a lot of people who want to help me and I am finally letting go of my pride and accept donations.  
I promise to write each and every individual (who leaves their contact information) a thank you note from me.  It will look something like this card I designed from  Shutterfly (they are always offering great deals and discounts on customized items). I will also include a bracelet or two while they last.  Each bracelet says "Someone I love has Lyme Disease" so you too can help educate about this horrible disease. I thank you for even considering donating to me and my Lyme fight. I love each and every one of you so much. Thank you.

June 25, 2012

Understanding My Weight Gain :/

So I've gained like 30lbs in the last couple of years (I think some of this is freshman 15 and newly wed I'm not blaming Lyme for every pound. But in the last 1.5 years since I got my diagnosis I have gained 15-20lbs and it is so frustrating because my weight keeps going up.  My calorie intake does not equal this kind of increase.  My doctors have told me multiple times that it is just part of the process, but last week I asked my naturopathic doctor about it and she had a great explanation of what's going on with my body. 

So from what I remember, there are four stages that your cells can be in:

Stage 1 (healthy normal cells)- in this stage your body can process toxins like pollution, pesticides on foods, etc., Things come in and go out through the bodies lymph system, sweat glands, bowels, urine, etc. 

Stage 2 (cells can't keep up with toxicity) - when you have more than normal toxins in your people living with mold, compromised immune systems, allergies, etc. Their bodies cells take on extra fluid to try and process all the toxins. They can help themselves by doing cleanses, colonics, workouts, etc to help the body detoxify. But it is important to remove as many toxins as possible, like doing mold remediation, eating clean and pure foods, drinking filtered water, etc.

Stage 3 (cells are more than 1/2 full of toxins and expand a lot) this is the stage I am in. From Lyme my system is compromised and my cells have taken on a lot of fluid to try and balance out the toxins but it is a losing battle. The pathways my body uses to detoxify are completely congested and have been that way for a while--especially my lymph system. So my body is trying to detox with saunas, detox drops, foot baths, colonics, etc and it takes a long time to clear these passage ways. As detox happens your body slowly graduates back to Stage 2 and then to Stage 1. With each step up the body is able to flush the toxins and extra water weight. 

There is a Stage 4 (where the person is EXTREMELY overburdened by toxins) so the body struggles even more with detoxing. 

I'm not sure much about stage 4 because we focused mostly on 3, 2 and 1. So if you are anything like me your body's cells are retaining fluid to try and combat the toxins flooding your system. Best thing to do is consistently detox. My naturopathic doctor who explained the stages to me encourages me to do castor oil packs on my entire abdomen and kidneys each night, drink detox drops in pure water 3x each day, make sure I clean all my fruits and veggies really well before eating and the list goes on and on.  In January, my primary Lyme specialist told me I need to stop eating dairy to help my lymphatic system.  I learned dairy is a natural inflammatory so it will just puff you up even more. (The worst part of giving up dairy, was ice cream was my favorite thing to eat, but I knew it was for the better.  Now I've been off all dairy for so long, when I do have it I get super sick.  I've had to learn to ask restaurants which things are safe for me to eat and it is so worth it.  No, I haven't lost any weight yet, I've actually gained more, but my lymph system is about 30% less congested...glad I'm making progress.

Understanding the stages of cells and toxicity does not make me feel any more attractive, but it makes sense as to what's going on with my body. No wonder I'm gaining weight! My goal now is safely and consistently detoxing my system in every angle (through skin; mouth-meds, food, homeopathy drops, green non-dairy smoothies; colon-coffee enemas and colonics; and nose/sinus's...basically everything I can do without over-detoxing my body.  The unfortunate reality is I'm not going to magically clear all these toxins out before I go on vacation with my family to Mexico or my sisters wedding...I'm so bummed I'm gonna be heavy for these photo-op moments, but hopefully in a year I will be able to get back down to my comfortable size. Oh vey. At least I understand it now.

PS-I am not a doctor and do not claim to fully understand this theory.  Work with your doctor(s) if you are struggling with your weight because I can only speak on behalf of my body.  #thesedisclosuresmakemefeelsillybutI'mscarednottohaveone

June 24, 2012

Reno Is Artown...Love the Art Movement

I live in a pretty cool city that has embraced art in a really cool way.  And now that I am living downtown I get to be part of it all whenever I feel well enough to get outside! I think the city of Reno admired San Francisco's approach to adding art to the city and wanted to do the same thing - only they have made a huge summer long event out of it.  If you are unfamiliar with San Francisco, they hired graffiti artists to cover over tagging and unpleasant looking tags that covered the city with beautiful murals on buildings.  Instead of trying to paint over it or scrub it away the city hired artists to transform the city.  It really added beauty to the city and Reno has done this a lot too.  

I don't know why or when Reno decided to bring in Artown, but I do remember some of the past projects and I am so excited to see what will come out this year. One art project I remember was someone decorated downtown with miscellaneous pianos (like 20 of them) painted in fun colors for anyone to play.  They were placed in random places, like on street corners inspiring anyone and everyone to play and produce music.  Another project I remember from past years is another artist chose to knit sweaters for trees.  It was silly seeing these beautiful trees wearing sweaters on their trunks, especially in the summer.  Artown runs all summer I think and it is so fun to see what people do each year.  Well this year, someone has this community project up on the side of a fence.  I was on a lovely walk with my friend downtown and we stumbled upon an early arrival art piece! When I saw it I was stoked to participate!  I picked my color of chalk, lime green seemed appropriate.

Of course, with all community art projects some people write profanities and tag the art and kinda spoil it for everyone, but I guess it is a community art project and anything goes.  I love that over time everyones responses will be erased and re-written by others so it is a living and breathing piece of art. 

"Before I die I want to will beat Lyme".  Thank you to whoever created this art project.  You are helping me heal and encouraging me to live my life beyond Lyme.

Check out everything coming up soon: and be part of the Artown!

June 23, 2012

Update & Understanding My Port

A couple of posts ago I detailed all the scary stuff I had going on with my body.  I'd like the report I am coming out of the woods on most of those things.  No, that strange bump on my port has not gone away, moved, grown, or decreased in size :( I did learn that if it is a bloodclot it wouldn't do anything life-threatening.  I've been icing it and taking pain medicine, and just trying to move on.  The doctor ordered an X-ray and everything looks normal so it must be scar tissue building around it. Best thing is, I am able to still get all my IV medicine in still, so as long as my port is working and their are no signs of infection I am doing good with regards to the bizarre bump and I won't need to have surgery to replace it.

I also have happy news today! I finish one of my IV antibiotics called Ampacillian last week and I started my new IV antibiotic yesterday.  I mastered another antibiotic and am moving forward in my treatment. I feel like I won a video game or something. It doesn't really matter except I get to go to the next level, which makes me happy.  I am one step closer (hopefully) to being done with this battle.  No, I still don't know WHEN I will be done...I only know that I'm making progress.  I had a really good doctors appointment a few days ago too and can report that my body is responding well to the naturopathic treatment I started.  If I haven't clarified, I now am seeing two specialists for my Lyme disease, one that uses primarily Western medicine, and one that uses primarily Chinese medicine. Which is awesome because I get the best of both worlds and they complement each other really well :D

For no reason, that I can identify, my shaking has dropped significantly.  I am almost wanting to say I am not struggling with the shaking because that would be a lie, but whatever was causing it is no longer an issue.  Honestly, I think it was a parasite die-off reaction due to the full moon. (If you just read that sentence and think I'm off my rocker, it's so strange but so true.)  When it's a full moon parasites basically have sex orgy parties in my body and I am on strong parasite killers. So I imagine them getting their groove thing on and then dying from my parasite poison medicine! Buwahahaha!

My kidney pain is WAY better and my oral antibiotics took care of the minor infection that climbed up into my kidneys.

I've shown pictures of my picc-line and of my port and now I am showing you what my port looks like without being accessed (meaning there is no needle probing into to purple power port that was surgically placed into my pectoral muscle). But seriously as I look at these pictures I keep thinking about Chandler, from FRIENDS, and his third nipple, I mean 'nubbin'. LOL.

Here's a diagram of the power-port with the huber needle to better explain.  The needle I use is 3/4'' and goes straight into the port then the butterfly wings sit on my skin.  When I am not accessed by the needle and my small hole heals I am free to go swimming or do anything (except get IV medicine) because I have no open areas that could get infected.

Incline Village Private Beach
Oh, and just so I have proof that I have been getting out and enjoying the sun and fresh air here are two pictures of me and my foot/feet!  I have been told I need to spend a minimum of 10 minutes every day outside-it is hard to drag myself out of bed when I feel crappy, but it's summer and I love being outside even if it's for a few minutes!

Poolside at my condo
As a side note, I am learning how important it is for my body to get energy from the earth and I was just introduced to the idea of 'earthing'.  I don't really understand it but from what I know it is using the earths natural state to connect to the bodies natural state and the stronger one gives of healing energy so by being in natural places I am helping my body to heal....? I think. I'm going with it for now. But it is kinda hard to get sunshine for energy, but be extra cautious of getting sunburnt because my antibiotics make my skin much more delicate. Anyway, that's what my understanding is right now...we will see what changes as summer progresses and I learn more.

June 22, 2012

My Light Bulb Moment

Today I am really reflecting back on my life.  I realize that I started having symptoms when is was 13 or 14.  I do not have many memories of me truly living life.  I was still in middle school and I know my biggest fear in life was if my bangs were perfect, if my armpits were sweaty, and if I completed all of my homework for all of my classes.  I was obsessed about those three things...oh yeah and I wanted to be friends with everyone, but was not in the "popular group" like my same-aged step-sister. My life was consumed by those silly things. It's funny to look back now and thing how petty I was.  

I do know, I have never really fully experienced life.  I had parents molding me and forming me to be a good person and I accepted Jesus into my life around that time.  I was never really rebellious, I always followed the rules and honestly, I think I played my childhood too safe.  I want to LIVE my life full of joy and all that life can bring without all this extra baggage my sickness adds.  I want to enjoy being married and be the wife I wish I could be instead of being the sick spouse and having my husband be my caretaker most of the time.  (Side note: when you get married and you vow "in sickness and in health" you seriously should talk to my husband first and see if you can make that type of commitment. I know most people just say in sickness and in health....but really you are vowing both. I am so blessed to be married to such a wonderful man)

Well, tonight my sick body dominated over my plans and I gave up trying to go because I was feeling so miserable. I missed my baby sisters last dance recital.  She started dance as a tot and I have been looking forward to tonight for so many years.  As a senior she gets to be a star in the show, have a lead position and it is something that all the people at her dance studio really look forward to...including me. Well, instead tonight I spent my time in bed sleeping and fighting horrible stomach upset and cramping along with an extra dose of fatigue. It breaks my heart to not see her big night.  My step-mom tried to record some of the dances on her iPhone so I got blurry videos of her dancing (surprisingly I could easily pick her out because she is that awesome!). But it made me smile every time I got a new text of a video.  Laying here I keep thinking that I am missing out on everything in her life. Like just a couple weekends ago I missed out on her high school graduation. I feel like the worst sister ever because I'm missing some serious milestones in my sisters life--all because I'm too sick to go.  I spent a little while having a pity party for myself and then my sister-in-law sent me this awesome text.  She reminded me that there will be an end to all this. I will get to experience life...REAL LIFE. Not having any rules or restrictions, I will be able to drive or fly to Disneyland on a whim! I will be able to drink alcohol pool side or anywhere for that matter! I will not be nauseous all day every day! I won't have to set dozens of alarms on my phone so I take my medicine on time. I will have energy to do more than one thing each day. AND I will get to cross things off my bucket list!  I WILL get to do life beyond Lyme.  Praise Jesus!  I have such tunnel vision to beat this but I often forget about life on the other side. I may have missed out on Amy's dance recital and high school graduation, but I can still be there for her future milestones.  What a light bulb moment!  

It is so refreshing to realize this state of my life is only temporary.  I can beat this. I will beat this. Amen!

June 19, 2012

SUPERMOM! With corrections~

I have an amazing support system helping me fighting conquering Lyme disease and I have written about it/them a couple of times. Sometimes I highlight a few people saying how great they truly are...but I haven't written a post dedicated to my real life SuperMom.  I wish I could show you her true superpowers of using coffee to make someone (usually me) smile and the power of her contagious laughter is the best. I'm pretty lucky to have this wonderful woman in my life.  Today, after a lot of stressing and money literally being swiped out of my bank account as I went from appointment to appointment stressing about not having insurance mom came through and conquered all battles!
My horrible attempt at the new Wonder Woman!

She organized everything, called a million people and accompanied me to my doctors appointment. She is amazing.  She can calm down anxious people (okay me) and bring them (me) back to earth in a five minute phone call, she can dominate as a social worker, and if you have someone in your life who is near death there is no one better to contact to answer your questions and calm your fears.  She is so good at running the "worst case scenario" and almost anything can be fixed over a meeting at Starbucks.  She will whip out her Gold Starbucks Card which always make my day all better. So here's to you my SuperMom! You really are a WONDERful WOMAN! I made you into two superheros to make you laugh - to dry up your tears that I am pretty sure me writing about you produced.  Neither quite look like my mom, but it's the best I could do today.  And yes, my mom does have a nice rack :) Thank you for all you do, seriously, thank you from the bottom of my heart, Mom.  You rock.

PS-I have a lot of superheros helping me through this battle, but today Mom really pulled out her A-game and deserves some recognition!

**Added a few hours mom did deserve the huge recognition I gave her today!  But, I misunderstood, my battle with insurance is not over, but we have logical and helpful action steps to take from here.  My mom managed to speak to the woman who denied me in the first place and she got a full understanding of what the insurance will need in order to move forward and cover my treatment under their guidelines.  Thanks mom, you still rock ;)

June 3, 2012

Scary Stuff

The last week has been extremely hard to get through. I started out the week with a new bump near my port.  I went to the doctor who placed the port and she put me on strong pain medicine and high anxiety medications - I was told to just take it easy and keep an eye on it.  Well it's been five days, I think, with no changes, except my pain is nothing compared to my kidneys (more in a minute).  The hope was that the bump would grow or shrink so the doctor could better determine what it is.  She considered doing an ultrasound but determined it was to small to really tell what it I wait and hope for it to change or go away. After watching it for a few days she will either drain the cyst? or remove my port or leave it alone if it was nothing of real concern (like a blood clot).  I've included a picture of it...this is not the most flattering picture of me, but whatever, look just above the butterfly wings to the little black line...that is the bump in question.  We put a circle around it to see if it grows or moves and this picture only shows part of the circle. You probably are noticing that I also have a bump in my vein in my neck, but that is not any concern it is just part of the port inside my large vein.  I feel like prime vampire meat with that vein so noticeable!  So no changes this far with the bump in question. It is still painful and still concerning.  Hopefully, I will call the doctor tomorrow and find out what my next step with my port is. I'm happy to report it does not appear infected or anything so that is really good! No infections that close to my heart that is too scary!

Then, I also have been feeling like I was getting a UTI (urinary tract infection) so I was put on some antibiotics while my urine culture was processing.  While feeling miserable I missed out on my baby sister's graduation.  It was so heartbreaking for me to miss her cross the stage and celebrate with her.  We had a ton of people over and I had a really hard time faking like I was enjoying myself. I was miserable.  My pain was not really helped by the pain medicine and all I wanted to do was sleep.  I just kept saying to myself "I'm sick of being sick", but I choose my treatment for a reason and I trust the protocols I am doing.  It is not easy, but I know it will be worth it.  My step-mom has been really struggling with my current protocol, she's been encouraging me to switch it up and try a more homeopathic/Chinese medicine route, but I am not ready to give up on my treatment path right matter how scary or hard it is.

I started a new symptom.  I shake, like crazy, like I have Parkinson's.  It's awful. I notice it a lot more than people around me but it makes my balance feel off and my legs feel unstable.  It makes my hands tremble and I am not confident to carry anything because I don't trust myself with all the shaking. I am not sure if it is a medication reaction or a new symptom of my nervous system being attacked by the Lyme bacteria or if it is a die off reaction (this would be good, meaning the bugs in me are dying and my body is processing them and the toxins they release). 

The last two days have been even more challenging as I think my UTI has traveled into my kidneys.  I have pain in my back that is nothing compared to the pain of the bump on my port.  I didn't even know pain like this ever before! It is new pain that the strong pain medicine doesn't help.  I'm drinking cranberry juice and other fluids, tracking my temperature (to look for a spike as an indication of an infection, and sleeping a lot. 

I am so glad that last week I called my primary doctor and booked an appointment...just to check in with her because she hasn't seen me in a while.  That is a God thing, because I certainly need to see her with all this stuff going on!  Also, I have a phone appointment with my specialist on Tuesday. I am very hopeful that both doctors she will help me to feeling better asap.  

Please keep me in your prayers. This week has had a lot of scary stuff going on, but I am learning to take it in stride. I am so happy that Justin is a paramedic and knows so much about the body and medications! I am one lucky Lymie!