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July 1, 2013

We've Moved!

Please change your email preferences to follow my blog at www.twistoflyme.net to stay up-to-date on my treatment. You can sign up there to received new email notifications if you'd like. Thank you all for following me and I hope to see you over at my custom domain site!! I'm getting better and I have lots to write about!

-Elizabeth

April 23, 2013

We've Moved!

Hey everyone! I've moved to Twistoflyme.net! Please follow me and my Lyme journey at my new location.

I've been working on a lot to improve my blog, but also to benefit the Lyme community. My Lyme Awareness decals are available at Twist Of Lyme Decals on Etsy.

And my designs are also available at Twist of Lyme Apparel on Zazzle. I'm adding more designs as my energy and clear thinking allow! So check back often.

I've loved having you follow me on blogger.com and I hope you will follow me over to my own domain: www.twistoflyme.net

Much love,
Elizabeth


February 25, 2013

Lyme Decals Are in the Mail!

Thank you so much to all of you who submitted for a free decal! I sent out round 1 of them and have just a few that aren't quite ready.  I wanted to let you all know envelopes have been sent with your Lyme Awareness decals in them!  For people who donated you can expect a little something extra because I made you a customized design as a thank you.

Please email me pictures (fightlyme911@gmail.com) of your decals when you put them up!  Please let me know city and state where the picture was taken so I can show the Lyme stickers are all across the country :)

If you submitted a request  for a decal and do not receive it by March 4th please email me so I can get that out to you! My Lyme brain was in a little spacey with this big project. So just let me know what you need and I'll be happy to send it out to you.

February 12, 2013

Exciting News! Decal Designs Are Unveiled!

Hey everyone,
I just wanted to thank you for your commitment to raising awareness about Lyme Disease.  With the help of my husband I am finally able to start sending out the decals.  If you recall, this process started with name suggestions and then a voting process to narrow down the best most effective slogans.

It's been a long process, mostly because I'm actively in treatment fighting Lyme which makes getting anything done nearly a million times harder, but I am committed to this campaign and really feel like it can make a difference. At first I wanted everyone to be surprised when they opened their mail to see the designs I've created, but I think it's even more fun to share them here!  

Here are the five phrases and their designed logos. Most of the decals are printed in white, black or lime green vinyl that is specific for surviving the elements (like the exterior of a car).


In addition to the five winning slogans I've created a Lyme Disease ribbon and a few modified/ customized designs that fit really well with my mission to raise awareness. Each request for a slogan decal will also come with an additional decal pertaining to the state you live in!  Lyme Disease has been found on every continent except Antarctica so it is 100% safe to say that "Lyme Disease Lives Here". I know the CDC doesn't agree with me, but bugs know no boundaries! I've also included in each of my designs below the silhouette of a tick so it looks like they are invading each design. I'm very happy with how everything turned out and I am enjoying working on each of the requests for FREE decals.  


If you would still like to request Lyme Disease Awareness decals, please use the form below. And remember, supplies are limited but I will try to get a decal out to each person who requests one. Please be patient with me as I am fighting this battle and only able to work on them during random times when I feel okay.  My generous husband is helping me, so hopefully I'll be able to start mailing things this week :)   OH, AND WHEN YOU GET YOURS AND PLACE IT ON YOUR CAR OR WHERE EVER, PLEASE SEND ME A PICTURE!  There is an envelope at the bottom of this blog that will take you directly to my email.
 
Just a reminder, any donations I receive will allow me to continue sending decals and growing this awareness campaign. I hope you are happy with the designs. Eventually, I hope to open up and Etsy site to sell these designs and a few others. I am not taking specific orders at this time, I only allow you to choose which slogan you like the best. As far as size and color that is up to me and my husband based on whatever we have ready to mail. When the Etsy shop opens you will be able to order additional designs with specific colors for a small fee to cover my expenses. 

Free decals are no longer available. My etsy shop will be up soon to purchase Lyme decals for a reasonable price :)

One last thing, please remember to email me a picture of your decal in action!  Click on this envelope to be directed to my email.

February 11, 2013

Living With Lyme and OCD

When I started this blog I decided to make my focus be on my life with a twist of Lyme. So, here we go...all about my little quirks that I consider to be Obsessive Compulsive Disorder tendencies and part of my anxiety.

As far back as I can remember I've been a germaphobe.  I am picky about eating meat and when I clean it's usually deep clean everything and get rid of clutter in my life because in my brain clutter=germs. I sanitize my light switches, remote control, cell phone, fridge handle, and anywhere else that my brain sees as dirty.  I consider myself to have OCD tendencies and not a flow blown case of OCD.  Here are the most unusual things that I do and I completely know its ridiculous and funny:


  • I refuse to eat meat (chicken, beef, turkey) that comes from more than one animal.  No hotdogs, hamburgers, chicken nuggets, most frozen dinners, ect. I can't fight the thought of contamination and the thought of multiple animals being mixed into one item for me to consume (like a burger) that is ground meat from an unknown number of cows. Ew. 


  • I can't eat beef unless it has NO pink at all and isn't dipped in the bloody juices. That is just disgusting to me. 


  • Every time I stay at a hotel, one of the first things I always do is sanitize the remote control in the room.


  • I get freaked out sharing beverages and food with anyone except my husband, even my sisters or mom.  If someone accidentally drinks my drink I will just give it to them because I can't get past drinking it after anyone else. 
  • The straws at Costco completely freak me out. They aren't individually wrapped and you have to push down that little lever to release a straw....it is a big test for me every time I go there and I force myself to drink from the nasty straw. 


  • I purge clean my house eliminating as much clutter and extra things that I can. 


  • I wash my hands very frequently and wear gloves to cook food, especially chicken.

So as you can tell, none of these things is life or death but it is a bit extreme for living life in America. I can at least laugh about these things, but I haven't been able to face the more severe ones (yet). Very recently the voice has intensified and added on consequences if I don't do the action like  'something bad will happen if you (me) don't clean ______ or get rid of ____.   It's ridiculously controlling.

I decided to fight the voice in my head on things that I know in my gut aren't a big deal but to my brain they are hard to get past and for some reason my brain is fixated on them. I try really hard to fight the control the little voice has over me. I watched a documentary once called The OCD Project and saw a ton of examples about facing these fears. I don't even know what I'm afraid of! I just constantly think about the germs! For example, I recently cleaned the fridge out and the top shelf was fairly clean,  it had crumbs, but my OCD kicked in saying I HAD to pull the shelf out wash both sides of it and put it back in the fridge. Instead of giving in to the stupid voice and walked away thinking 'screw you' to the OCD voice.  Ever since that day I have thought about the top shelf of the fridge, but I refuse to clean it because I refuse to give into everything the OCD wants me to do.  Another time I could completely melt down is when I drop one of my pills on the ground....but before I can think about it too much I pick the pill up, dust it off (not really believing that dusting it off will help in be less contaminated) then swallow it and ignore that OCD voice to the best of my ability.  I've had to catch myself numerous time from wanting to check if I flushed the toilet or locked the door or turned off the stove and then check again.

I've gotta say, the things that I haven't been able to get past (yet), like mixing meat and sanitizing remotes and light switches, are silly, but I really believe I've had OCD tendencies for so long as a way of protecting my already compromised immune system.  By looking at it from that approach it is completely logical for me to have these fears about germs because my body isn't strong enough to process anything extra. And it's also logical to believe that as I continue to get stronger these tendencies maybe won't be so bad!


Tonight is especially bad. The stupid voice keeps telling me I need to sanitize the bottom of all our shoes. Are you kidding me?! No fricken way! I will not give in. I am stronger than Bartonella and I am stronger than the stupid things that my mind fixates on!


Instead I write and share my life with a twist of Lyme (and Bartonella)!

February 6, 2013

That time I blew up like Violet from Willie Wonka, passed a tape worm and broke out in hives....Yeah, I've been busy!

Hello there! It has been forever since I sat down to write.  I have so many things to catch you up on so here we go:

Since I last wrote I had an excellent appointment with my Lyme specialist, in January, who estimated I had about 9 months of intensive treatment left and that I would be off of 85% of my medications!!! When I saw him in November he told me 14 months so based on my calculations I have shaved off a couple months from his initial estimation! Wahoo! My lymph is finally responding which is such a blessing and my face has stopped breaking out with painful cysts. I am still detoxing on a daily basis, and lately my detoxing has included 3 colonics each week and then Castor oil packs, water enemas, oil enemas, various detox drops, etc. I completely agree with Hippocrates and his theory that 'All disease begins in the gut.'  My digestive tract has been very sluggish and wasn't allowing anything to pass through. In fact, I even gained eight pounds in a week and ballooned up like Violet on Willie Wonka! I did all sorts of cleansing that is supposed to empty out the entire digestive tract and I got nothing! Even after doing the entire huge jug of GoLightly (people use it for colonscopys) and I only passed water. It was kinda scary, but I knew I was in good hands with my colon-hydrotherapist and my naturopath. So I upped my frequency and began drinking Castor oil and doing oil enemas each night.  Finally after a few days I was able to get rid of that extra water weight and help my body flush out all my toxicity.  During many of my colonics I have seen small parasites or portions of parasites BUT one of the days I saw a two-foot long tape worm. No joke! Ew! I'm glad he's out!  No wonder I was having issues!! I tried so hard to capture a picture but I failed miserably with filming the little viewing tube. It's probably best because I'm saving you from seeing what comes out of me during the colonic, though I do think sharing the parasite could be super interesting.

As I take on more and more responsibility with my treatment plan, medication schedule and appointments I am realizing that sticking to my treatment is more intensive than a full-time job! It wasn't until last week that I was able to see the fruits of my labor because I had two AMAZING days.  I haven't had an amazing day since when I rode Kristi's horse and that was last January! I'd say I was way overdue for a wonderful, feeling invincible, kinda day.

I'm noticing some improvements in my health and so are those close to me. Earlier today I talked with my mom on the phone and she commented, "sounds like you are doing great today...I can hear the pep in your voice!" I love that.  I've had bigger swings of feeling really great then feeling bad but in the end it is all worth it because I am actually seeing glimmers of what my brain will be like after all these bugs are out of my body :)  I think all these positive moments are from my latest antibiotic that seems to be working really well.

I can't believe I'm about to share this because I don't want to jinx anything (even though I never really believed in jinxes...) but, I've started to actually think about what my life will be like after Lyme and after my treatment. Will I go back to school? Will I go back to my old job if there is an opening? Will I step up my Lyme Awareness and try to get a job or internship relating to that? Will I start off working as a Jewelry Lady with Premier Jewelry (I love that company) and work when I feel well? I really don't know and I'm just excited to start thinking about what my future holds! If my timeline is correct Justin and I can start talking about family planning and bringing a baby Grimm into the world possibly in 2014.    :D

I'm an Aunt! Happy Birthday Mason!

One things for sure! When I am done with this treatment I am going shopping for a total wardrobe makeover and I will be happy to say goodbye to my yoga pants. They have a purpose right now with my body fluctuating sizes so much, but when I am off treatment the fluctuation should stop and I will be able to wear real actually cute clothes! I can't wait! Also, I am really hoping Justin and I can go on an epic vacation.  I think he deserves it more than I do but it will be SO nice to get away and not have my life revolve around infusions or taking medication every couple hours. Here's to hoping the next nine months fly by or I am able to continue getting better as fast as possible and beat the 9 month marker!


With all these positive changes I decided it was time again to seek out a counselor. She is working with me to transition from being a sick person to a healthy and vibrant one. I really don't know how to do life without being sick or having some sort of medication bog me down. I've missed out on a lot of life because of my Lyme disease but I am getting better and I am scared of the unknown but so excited to just have a normal life. Hopefully I won't have to calculate my spoons like I have had to do so carefully the past couple of years.  I'm going to be free!!!

Today is a monumental day for me and my treatment. Today my port turns one year old.  I had the needle and dressing change today and my port is still working well and looks great. It was unfortunate and a huge pain that my body didn't respond well to all seven of my picclines but the port has worked out great for me and I find it way easier to conceal and care for than my piccs ever were.  But since it's been a while since I blogged I get to celebrate the one year anniversary of getting my port, my sister-in-laws birthday and the birth of my nephew, Mason!

Love this tub! Helped so much!
In other news, a week or so ago I broke out into massive hives.  I was totally freaked out because they came out of no where! I have learned Lyme gives me bizarre symptoms that are just one time occurrences, but it was kinda scary because nothing I was doing could help them or stop them.  The hives started out just above my butt crack and spread all over my body like crazy. I was circling them and putting a time next to it so I could see if they were growing, but the hives were multiplying faster than I could keep up! It was crazy and a little scary. I was so itchy and all I wanted to do was sit in a cool bath tub full of Epsom salts and help my body detox whatever was causing the hives.  I was able to score a hotel suite at the El Dorado (which is literally 200 steps from my front door to their front door) but it didn't matter how silly it was - they had a giant bathtub in their suite rooms and I was determined to get in it asap!  It worked! My naturopath was so impressed with my brains ability to problem solve and get myself into and bathtub before she could return my message. I do have to say my mom and I shared many laughs of me trying to photograph all of my crazy hives. I tried to describe them but words wouldn't do the severity justice, so I used my phone and took some rather embarrassing photographs of my butt! lol! All I could think is, what if this accidentally posts to Facebook. I would be so mortified!
My poor hive-y knees

It took four days before the hives calmed down, even with all the extra pills and creams I was doing to manage them.  Guess what the hives were from? Heavy metals! One of my new medications is a cyst buster and when it started working it caused cysts inside of my to burst leaving behind the waste from inside the cyst.  So all of a sudden I had a spike in the amount of heavy metal in my body.  It was miserable and so itchy, but I am so happy my body is fighting to heal and the medications are helping :)

More recently I've been working hard on the Lyme decals, that my faithful followers submitted and voted on, and am starting to send them out to everyone who requested one. My hope was to roll them out with the new year, but that did happen so looks like it's more of a Valentines Day roll out. I am pretty excited about all the designs I've created and I think you will be very happy with them too!  My husband is helping me with an Etsy store to feature all the designs on. We are also going to set it up so we can take special orders.  I feel like it's a nice professional way to spread the word about Lyme disease. Like I would never put a bumper sticker on my car, but I have no problem putting a vinyl decal on the window of my car. I am committed to creating the decals and mailing them out and keeping my costs as low as I can. I understand money is tight for 99% of Lymies and I want these decals to be on as many cars / bikes / drum sets / binders / skateboards....you get the idea! I just need help spreading the word everywhere!  Awareness is so important to me because I NEVER heard of Lyme disease before I was diagnosed and I am certain if I had heard of it, I would have been able to diagnose myself years earlier! So my focus is to get the word out there that Lyme exists. If you remember, I am going to send out some free decals to my loyal readers if you fill out the form on the bottom of this post (restrictions apply as my funds are not endless, but I don't mind spending a little money to get decals all over the US and even the world).

I promise not to be a stranger! Have a great day everyone.  PS-it's not too late to request your free decal! So fill out the form and check your snail mail for a free surprise from me and my husband :)  All we ask is you would send us a photograph of your decal in action!

**Free decals are no longer available. My etsy shop will be up soon to purchase Lyme decals for a reasonable price :)