A Lyme Disease Blog Sharing Support & Awareness

Women's Lyme Awareness Tees For Sale NOW (Designed By Yours Truly) :)

9/6/2014

Hi everyone! I have exciting news to share! For the last few months I have taken to doing some T-shirt designing. I have been wanting to make a Women's Lyme disease awareness tee that I thought was unique and wearable (and I didn't forget about the Men I promise!). I also wanted to do something to give back to the Lyme community, and I thought that a shirt idea would be great. The profits from this shirt will got to Lyme Disease research.

I always looked at most Lyme shirts and they were typically lime green or had an image and fit that was unisex. While I understood why, I wanted to create some variety. Many of you who have been following me know that I was attending a Fashion Institute before I had to quit when I got sick. I have always really been into creating and designing things. I set out to design a tee that FIT like a Women's tee, and had a design that was both classy and classic. I wanted a tee you could wear that showed Lyme Awareness but didn't scream it. A shirt you could wear out anywhere.

And within those boundaries I came up with the shirt which is available for order NOW! I am very happy to announce that this shirt is available for order on TeeSpring starting now, and is ONLY ON SALE FOR TWO WEEKS. The way that Teespring works is that the shirts are up for sale for a set amount of time (2 weeks), and during those 2 weeks they take orders. If the shirts reach the goal then the shirts go to print. If they do not reach the goal the shirts won't be printed and your card will not be charged. So, if you all love the shirt, which I really hope you do, then please make sure to purchase them as soon as possible! I have many different styles available, including two styles of t-shirts, a long sleeve shirt, a tank, and a sweatshirt!

Click Here to buy the Shirt! and make sure you check out the front too, it has a cute monogram on the front pocket, and the big design is on the back.

xoxo,
Christina

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An Open Letter: What Does It Take To Be An Advocate?

7/29/2014

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Doing advocacy work is not for the faint of heart. There is so much more to this than just putting my face on something that says, "Hey pay attention to Lyme disease!" There is a component you need to be a good advocate and that's the ability to bare your heart. It's the ability to listen to the problems & gut wrenching stories of people around the world & try not to let it break you down, but instead inspire you to work harder. It's the hours upon hours spent trying to help others virtually by offering advice and suggestions, or locating them a Doctor. It's the joy you feel when your advice is helpful, but it's also the sorrow you feel when it wasn't enough.
That's the part which people forget. That's the part which wears me down.

I am an empath by nature. It's both a blessing and a curse. An empath takes on the emotions of people around them & soaks it all up. Other people's sadness becomes my sadness, and I have a hard time separating the two. Sometimes I need to take time for myself to recharge because it becomes too much. Being both an empath & an advocate is a combination that can wear down my soul because there are very few happy stories that that come around.

I think the hardest part of this job is realizing I can't help everyone. As much as I want to, I am just one individual who is fighting her own battle too. There is only so much of myself I can give, so I work to put out as much information as possible in hopes that it will be enough. I work to give my friendship to anyone who contacts me in hopes that they feel less alone. But what happens when it's not enough? I knew that what I had to give couldn't be enough to save everyone, and when that moment finally came I felt the heartbreak deeper than I could have imagined.

Someone reached out to me recently asking for help. She asked for more help than I could realistically give in my current situation. Her story pulled at my heart and I could feel the desperation in every word she wrote. So I did the next best thing and I offered other options & suggestions. I offered support, I offered to start a fundraiser, and I offered to make calls on her behalf to every LLMD possible to get her the care she requested. I racked my brain and sent her a wealth of information to arm her with what she needed to succeed. Anything I was physically able to do I did. Once our dialogue ended it seemed like it was on a positive note, and she had found many people who offered to give her the help I could not. I thought everything would be okay. So you can imagine my shock when I got word that very recently she took her own life. It came down the fact that she couldn't get the help she needed for her soul, and inevitably it was the only option she felt she had. When I got this news it felt like someone took my heart and crushed it. I couldn't believe the words my eyes were reading on the screen. Despite what many believe she had support; she had people across the country rallying for her and lending helping hands. But at the end of the day it wasn't enough. The pain won the mental battle.

That is the reality of this disease. You can go online and see all kinds of fun Instagram posts of perfectly curated gluten free oatmeal photographed in a ambient light. "Look how fun clean eating can be!" says the caption of the organic Quinoa in red pepper sauce. You can get on twitter and see quotes filled with hope and people talking about the yoga they just did which was SO rejuvenating. "Look at me, I'm up at 8am doing yoga I'm so zen." You can get on Facebook and see people putting only their best face forward when they talk about their lives and the amazing day they had. But that's not real. THIS is real. The pain is real. The depression is real. The unrelenting loss of hope and non stop heartache that drives people to take their lives is real... because the thought of living with this disease is too much to bear. In the digital age we only put the things out there which paint us in a favorable light. We like to show off the pretty things & hide the reality. But that isn't authentic. Being an advocate means showing what's REAL, because people need to see it. It's not always roses and rainbows hidden behind many layers of filters. I put my heart on my blog and I wear it on my sleeve because it's the genuine truth, and I pride myself on that. I want people to see me and realize they aren't alone, and someone else out there is hurting too who knows how they feel.

Being an advocate means not ever shying away from the cold hard facts. It means reaching out to those who are hurting and offering them a shoulder. It means admitting your downfalls and showing your weakness so that other people realize they aren't alone. It means speaking out for those who feel like they don't have a voice. It means being the unpopular opinion in a world that's so focused on being popular and well liked. And most importantly being an advocate means being selfless. Because this is a full time job, one that never rests.
So you have to ask yourself, do you have what it takes?

Being an advocate has been the biggest blessing while also being the biggest source of heartache. I don't think I could ever find the words to express my sadness, guilt and inadequacy that I feel right now. I know it will take time for me to realize I won't be able to save everyone, try as I may. I wish for nothing more than the ability to have the resources to take every lost soul and connect them to a vessel of hope somewhere. But that isn't realistic. The only thing I know I can do is be me, and keep trying day in and day out to be the best version of myself for those who seek guidance.

So for now I'm going to take a brief leave of absence to get my bearings and recharge. If I don't reply to emails or tweets that's why. Please know I love and care about all of you so much, and I know you fight this battle every day with the greatest courage. But sometimes an advocate has to rest & I now is the time I have to take care of myself.

God bless,
Christina

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Join Me For A Live Twitter Chat About Lyme Disease

7/21/2014

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Every week WEGO Health hosts a Health Activist chat on Twitter, which covers many different topics and diseases across the board. This week the topic is Lyme Disease and they reached out to me to guest host the chat. I'm so excited to be doing so and I hope you all can join in, be it participating or simply just listening in on the conversation.

The Lyme Chat will be this Tuesday 3/22 at 3PM Eastern Time. The chat lasts approximately 1 hour. The easiest way to follow along with the chat is to use the online site "Tweet Chat" and follow the hashtag #hachat. And make sure you follow myself on twitter @LadyofLyme as I will be doing all the questions from my account, as well as @WegoHealth because they will be the ones moderating the chat throughout. But like I said, going online to tweetchat from your smart phone or computer is the easiest way to follow along in real time.
I'm looking forward to joining all of you and hearing from you guys on different topics. The best way we can help one another is by sharing information. This chat will open up doors to be able to hear what others are doing and share what you are doing as well. Even those of you who are caretakers of someone with Lyme disease or have a close friend/relative, it will be very beneficial to get the insight and maybe learn a few things along the way.

See you guys there!

- Christina

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Featured "Inspirational Woman of the Month" (IWGN)

6/5/2014

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Last month, Norene Elverrillo from the Inspiring Women's Global Network (IWGN) contacted me and asked to feature myself (Lady of Lyme) as their Spotlight Inspirational Woman of the month. I did a double take when I read the email, and I was both utterly honored and humbled that she would choose me for something so wonderful. In my day to day life I don't see myself as inspirational; I see myself as a fighter just like all of you who join me on this journey yourselves, of those of you who join me in support and encouragement. I see myself as a regular girl who is just trying to get by in this crazy world of Lyme disease and share things along the way. So hearing from Norene was flattery at it's highest honor.

The Inspiring Women's Global Network is AMAZING because their motto is to "Engage, Empower, and Excite!" I took this segment from the IWGN page, as it does a great job of highlighting what they stand for:

"Inspiring Women’s Global Network (IWGN) is the premier business and social network for chronically-ill, women entrepreneurs. We are a community of vibrant entrepreneurs, authors, bloggers and achievers, both accomplished and aspiring, who are impacted by a chronic illness, “disability” or other health crisis. It is our conviction to live with purpose, take optimum care of ourselves and remain financially independent through entrepreneurship. We gather here to connect with like-minded women, share information and resources, give and garner support, inspire and be inspired and to have a little fun!"

IWGN is a network of women who got dealt a tough deck of cards, but are striving to inspire one another to rise above it and see their full potential. We can do whatever we put our minds to, these diseases can NOT take away our mind or our spirit. And I absolutely adore that mindset. It's filled with honesty but at the same time optimism. The community is one that you can join yourself by getting a membership and connecting with other women.

So, with that, I wanted to say THANK YOU to Norene and IWGN for choosing me, and for giving me a reason to blush 100 times over as I read her post. You can read it full HERE, but I also posted a teaser below. Please take a moment to check out my Spotlight piece on IWGN and click on over!

xoxo,
Christina

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Nomination for WEGO Health Awards!

11/17/2013

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Oh my GOSH! I have exciting news to share! I don't know who it was, but someone nominated Lady of Lyme for a WEGO Health Activist Award, in the category of "Best Kept Secret." Thank you, thank you! I was so honored and absolutely thrilled to get the email this morning saying I was a Nominee!

WEGO Health is a large online health community that helps to empower Health advocacy. They are wonderful, and this is wonderful!

xoxo,
Christina

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Vision Therapy + Vestibular Therapy. An Update

9/23/2013

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I guess its about time for me to do an update on how everything is going with me. Oh geez, where to even start. Well, since the beginning of August I have been doing Vision Therapy every single day. Some moments are really tough because it feels like I can do the exercises 10 days in a row, and for some reason my eyes just don't see what they need to. And that is beyond my control, I can make my eyes turn inward when they needed to, or make my brain stop shutting down my double vision. Being a type A personality it was hard for me when I was in that funk. When I hit a bump like that I just had to keep trying over and over until my eyes finally saw it. Vision Therapy really is one of the most mentally tasking things I have had to do, and I am no where near completion. Usually this therapy is done in office at the Doctor's office, but since I can't travel so easily my Doctor installed it on my home computer. The patients who go into his office who have had brain damage & problems like mine typically go 2 times a week, and take about 75 sessions to repair the damage (About 9 months). So, I really don't know how that will translate with me doing it every day. I would hope obviously quicker, but I don't think as quick as 75 days, because I am already about 50 days into it, and I don't feel anywhere near 50% better. It's slow. My eyes have to re-learn how to do everything. They need to learn to turn inward together, my brain needs to learn to stop shutting one side of my eyes off, and I need to get depth perception back. I have a long road ahead with that, but I'm not giving up. I feel really burnt out on it, and I just wish I could know when this would pay off.. But, patience is a virtue right?

I also started doing Vestibular Therapy as well. I'm starting incredibly slow with that though, because I am really sensitive. Until I had gone to college I have never exercised on any exercise equipment. How ridiculous is that, right? Anyway, when I went off to college I joined gyms and all that jazz, and I noticed that after I got off the elliptical or the treadmill I would feel like I was still bouncing afterwards. I would get off the machine and have to sit down because I was dizzy and felt like I was still moving when I was still. Almost like the ground underneath me was moving. Honestly, I thought this was normal. Maybe it is, do any of you ever have that happen??
Either way, that was a thing lonnnnng ago and after that it was just a slow progression of Vestibular things which I brushed off as normal. I started having really terrible balance, then I noticed if I closed my eyes while standing during church prayer I would start swaying and have to hold on to the pews. All of this was weird because I was a dancer for a large portion of my life, and I could not understand why balance was suddenly an issue. Then, as time went on it got worse and worse. One time I was on a pool raft floating for an afternoon and when I tried to get to bed that same night I felt like I was still floating and bouncing and dizzy.
Eventually it was to where if I was in a chair and someone turned me around or pushed me I would feel the movement of it long after it happened. Flipping my head upside down made me so dizzy I would fall over, turning my head quickly did the same thing. I couldn't ride elevators or escalators without having a dizzy/moving feeling when I got off. Long story short, it was bad!
As I did the Visual Therapy and I kept working on my driving, I realized this vestibular stuff was a huge contributor in issues. When I picked up speed (going just 35mph), it felt like my head was being crushed, and my eyes started to do Nystagmus movement severely. And that's scary when you are driving a car! It's a terrifying feeling of like panic that goes on within my vision & vestibular system when I pick up speed. My eyes are trying to put together the quickly moving environment (and failing), and my inner ears are trying to gauge where I am in the world that's also moving quickly (and failing). It's a recipe for disaster and it makes me so sick and so uncomfortable.

Neurological problems have always been the biggest downfall in my journey. The brain is responsible for so many small details that healthy people take for granted. And the Lyme bacteria itself has created so much damage that I get disheartened so sometimes. Especially when I see the goal and I can't quite get there. But either way I am doing Visual Therapy and Vestibular exercises every single day. And I have to believe that at one point this hard work will overpower the Lyme that is still there pushing back and trying to continue to wreak havoc.

So right now I am working on that, I'm working on my immune system, and between those 2 and the inevitable fatigue it has me wiped out just about every day. I have also been doing something health-wise since this May and I will talk about it this week/next week in a longer post. I always like to wait when I start something new before I discuss it on here so I can give a realistic review of it. I don't want to waste anyones time discussing something that will do squat, and if I do try something amazing for my body & I feel like it works wonders then I definitely want to share. So, with that being said, I am going to finish off this post. I hope everyone has a happy and healthy week!

xoxo,
Christina

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Bite Back For A Cure

8/12/2013

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I've had exciting news to talk about, but since I've had a hard time using electronics I wanted to wait until I could write a post that would do it justice.

I am partnering with the Tick-Borne Disease Alliance (TBDA) for their campaign: Bite Back For A Cure. I can't possibly be more excited about this opportunity because I love the work TBDA does for everyone in the Lyme community.

Bite Back for A Cure is a nationwide campaign that is working to bring real change to Washington. The goal is to take a message to Washington showing them just how many people all over the United States are effected by Lyme Disease & co-infections. This spans across from patients themselves, to their loved ones who are passionate about seeing a change. The campaign is Multi-dimensional, and has lots of components that will help open a discussion & bring attention about tick borne diseases to light.

I want to talk about a few of the great things happening with this campaign & also how you can help out.

John Donnally, a 24 year old Lyme sufferer will be cycling cross country to bring attention to the horrible diseases ticks can carry. He is kicking off his bike tour with a series of rides & stops in the Northeast. There are many stops along the way which will each have events held by the TBDA. They will have many different speakers & activists at these events, helping to educate the community.

This is such an utter act of selflessness, and I'm grateful that he committed to something so huge, all for the cause of helping others. This will get media to pay attention & that's ultimately where it all starts. This national tour will be huge & I am so excited for it to begin on August 18th.

If you want to follow along on John's journey or attend one of these stops, you can follow this link for more info:

TBDA Event schedule

So if you can't make it to these events, how can you help? Good news, it's SO easy! The TBDA is asking everyone to print out one of their signs from bitebackforacure.org and take a picture with it. Then, send that picture in to TBDA. When this campaign is through, they will collect all the photos & put them in a video to take to Washington. In order to make an impact our leaders need to see the faces of those effected in any way. It will really get the message across & help change happen.

And as always if you would like to donate to the campaign, visit bitebackforacure.org

This campaign will run until November & I can't wait to have you all get involved too. We know we need change & I'm thankful that The TBDA is giving us a platform to have a voice.

Also, the TBDA did a 2 part interview with me, and I wanted to share Part 1 of that interview here. Thank you so much to them for sharing my story!

Part 1 TBDA Interview

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Lyme Interview

5/18/2013

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Hey guys! I have lots and lots of info to talk about, it's been an incredibly hectic week. Treatment itself has kind of been kicking my butt, and the exhaustion from Mothers Day and the days after it have officially caught up with me!

I want thank my local news station WSAZ for covering my story about Lyme disease. Also, thank you to everyone who reached out to me afterwards. Whether you found my blog & contacted me, or just found this site and read about how I am doing. It genuinely means everything to me. Bringing awareness is obviously something I am so passionate about. I felt very fortunate to share my story and get the word out there in this way. To everyone I have met from this, I am thankful. Also, I apologize if I take a while to reply to emails. Between the brain fog & exhaustion, its hard to find moments where I can articulate things how I would like to. So, I promise I am never ignoring anyone!

Below is the video from my interview:

xoxo,
Christina

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Before you pass judgement.. The truth about my life with Lyme disease

11/26/2012

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The great thing about Thanksgiving is it gives people a time to reflect on things they are thankful for. Even though we may all be thankful on a daily basis for a multitude of things, it's still nice to be reminded of all the blessings in our lives.

I am thankful for A LOT. More then words can probably list. But most of all I am thankful for the people who love me for me & don't pass judgement. Throughout this disease I have got my fair share of sarcastic comments from people who I believed to be my friends. When I have a good day & I am active, or get dressed up to celebrate a holiday, I feel like its a huge accomplishment. Often times I cry tears of joy because I can't believe I was able to just get out of bed. So I was shocked when people I loved came at me with negative comments instead of being happy for me. I want the people I love to feel the same joy I feel when I get to be normal for a brief moment & do things they get to do every day and take for granted. I live in my bed 24/7, and have been for this whole year. Getting to feel normal is AMAZING, and of course I'd love to celebrate that with those I love. But that hasn't always been the case.. Words of support like "That's so awesome you could do that," or "I'm glad you got to have a good day," are things that make my heart happy. When I love people I love them deeply. I hate to see them hurting & I am beyond the moon when they feel joy. But more times than none lately with some friends I feel like it's an interrogation, even if its not on purpose. I hate that I have to explain why I do this & why I do that, but then why I'm not better & can't drive somewhere. It sucks (to put it bluntly).

So here is my explanation to the world. Am I healthy? No. I actually spend 99% of my time laying in my bed in my pajamas, sleeping approximately 13 hours a night. I am almost always in some kind of pain, and yes it's a huge accomplishment for me to shower or do any simple task on most days. I eat 100% of my meals in bed because its too painful & exhausting to go downstairs for it. It's a job to get all the calories I need in every day when I am almost always nauseous. I survive partly due to frequent Epsom salt baths & most my time is spent remembering when I need to take my next medicine or how to manage the pain I have at the moment. I take 15+ supplements/meds daily to simply function.

Life isn't glamorous. It's not something amazing. The things we all do in regular life on a daily basis are taken for granted until you can no longer do then anymore & I learned that. So amongst all the difficulty I face daily I try to keep as much normal as possible. And when a birthday or holiday comes my family makes a big deal out of it to cheer me up & remind me I'm still myself underneath it all. We all dress up, I put on makeup (once in a blue moon) & we enjoy the day, the moment, the time to the fullest. I am reminded no matter how crummy I feel on the inside I can also feel pretty. It's been a long 11 months going through everything & when I feel good I know I deserve it to enjoy it.

People will always judge without taking the time to know everything. But until you have walked a mile in my shoes I don't want to hear negative opinions. I simply don't have time for it. I have always been a positive, bubbly, talkative & happy individual. And just because I was dealt a bad set of cards I'm not going to lay down & die and let myself fall into a depression. I can get through this pouting being a Debby downer, or I can get through this being positive & happy even if I have to smile through the pain. Lyme disease has taken away my freedom & my health, but I won't let it take my livelihood. I'm sorry if you think I look "too good" to be sick, or I'm "too happy & normal sounding to be as bad as I say I am." If anyone honestly believes that please feel free to exit my life.

And for my amazing friends who love me through all of this (you know who you are), I will forever be grateful for that unconditional support. I know I couldn't keep pushing through without it. It makes me feel empowered when i'm motivated by saying how glad you are I had a good day, or compliment me on achievements I've made health wise. That positive reinforcement reminds me why I'm still fighting day in & day out.

Lastly, for everyone who can relate to what I just talked about, know that it does slowly get better. Sometimes I wondered if people are so bothered by joy to criticize it then why on earth are they still paying attention? Then I realized a lot of individuals like to hear that someone else has it worse then them. But when they see a picture of me & I'm not the horrible looking person they imagined, it's like annoying to them. I guess I burst some bubbles along the way. Sorry, I'm not letting myself go, I'm still me. If you want to see a disaster open up a gossip magazine. Just know there will always be those who pass judgement or want to put you under a microscope. If you haven't yet, unfriend those people... It's not worth it. And then remind yourself of the awesome, glorious, wonderful friends you DO have. They rock, and they will be there through thick or thin the rest of your life :)

Xoxo,
Christina

Uncensored: if you got to see me day in day out this sums it up. Mom captured me trying to get rest in a dark room with my heating pad & feet detoxing in an Epsom salt bath. Glamorous everyday life.

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Donate 4 Lyme = A Success!

12/5/2011

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Wow, Donate 4 Lyme was a great success! I met so many people who shared stories of how Lyme has affected their lives because of friends or family members. I also met people who have heard of it & were shocked to hear how chronic Lyme can take so many lives. The amount of support & great feedback I got just amazed me. Of course I had those who just walked right on by when I approached them, but that is something I always expected.

One of the biggest shocks I had was how many people were unaware of what Lyme was. Considering Kentucky is known for deer hunting this was a big surprise. You have to be aware & you cant assume just because you live in Kentucky instead of Connecticut that you are free from risk. I really hope & pray the people I did reach will take it serious enough to read up on the info given and be aware of what to look for.

The sad moments of the night was meeting two different people who actually lost a loved one to Lyme. It really put life into perspective to hear how they could not get help. One man begged his doctor to help him because he knew he had Lyme disease & his doctor REFUSED to help him. He ended up passing shortly after. It breaks my heart. This is exactly why I am doing what I'm doing and being persistent. We don't need to lose any more people to this horrible disease. No matter how tired i get I will always be open to talk about Lyme and hope everyone reading this blog will be too. I'm able to survive & beat this disease because I got a diagnosis & I am thankful every day I wake up.

I would also like to thank all of my support during this adventure. My wonderful boyfriend for stringing 200 candy canes all week helping me prepare, and standing in the cold for 4 hours speaking to people about Lyme. My amazing family for their love & my dad driving 3 hours each way just to surprise me at the event. My friends who took time out of their busy day to come see me in the cold & cheer me on, & also for those people who offered moral support & encouragement via a call or text. No one can understand how much it means to know I have a lot of people willing to learn & have my back through this all. If you know me well then you know I won't take a fight laying down. I'm going to take all my good days to continue educating & raising money for Lyme research. It must be done & even if it's just one person doing little things it will make a difference.

Thank you again to everyone SO much and if you want to read more about my Lyme info page or donate the link is below

Www.tiredoflyme.com/donate4lyme.html
xoxo

Christina

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Women's Lyme Awareness Tees For Sale NOW (Designed By Yours Truly) :)

An Open Letter: What Does It Take To Be An Advocate?

Join Me For A Live Twitter Chat About Lyme Disease

Featured "Inspirational Woman of the Month" (IWGN)

Nomination for WEGO Health Awards!

Vision Therapy + Vestibular Therapy. An Update

Bite Back For A Cure

Lyme Interview

Before you pass judgement.. The truth about my life with Lyme disease

Donate 4 Lyme = A Success!

Follow Lady Of Lyme (@ladyoflyme)

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