lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

The Most Valuable Walk of My Life

I just had what might have been the most valuable walk of my life. A walk that all of you took with me. I walked from work with my little dog and over $20,000 in toe up the street to the bank. I was on my way to start a LymeOut bank account specifically for my treatment. Instead of being denied another loan because my debt to income ratio is too high and worrying about how I was possibly going to recover from this crappy illness, I am crying tears of relief and joy because I have somehow been lucky enough to have such incredible support from family and friends. I must have done something right in a previous life, because this really is the greatest gift that I have ever been given. Not only is it an opportunity to take full advantage of the best resources possible to give my best shot at healing from Late-Stage Lyme, but it is also an opportunity to be humbled like never before. Humbled by the goodness of others and realizing that all this time, all I had to do was ask for help. Being vulnerable has always been really difficult for me. I always thought I had to be strong and independent no matter what life throws at you. What I know now is that the truth is quite the opposite. If we want true strength, we have to look towards each other. In a culture where we are too uncomfortable to take off our headphones to say hi to people sitting next to us on a bus, it’s easy to forget the importance of community. So, thank you for helping me financially, but possibly more importantly, thank you for showing me that being vulnerable and reaching out to others for help is really where strength lies. I could never say thank you enough. Hugs to you all.

Much love,

Lyndsey

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LymeOut Lyndsey Fundraiser (AKA “I Have The Best Friends Ever”)

Last month my absolutely incredible friends held a fundraising event for me at The Green Frog, a local bar here in Bellingham. I really don’t have the words to describe how amazing it was. It was one of those nights that could never be replicated. The energy and sense of community was like nothing I have ever felt. We cried, laughed, hugged, and danced. It definitely made me realize how special my friends are and appreciate them even more than I already did. I am a seriously lucky girl. AND, we raised over $11,000! Carl Buchanan was kind enough to donate his time taking photos at the event. Take a look at some of the photos and I’ll finish blabbing after 🙂

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That’s me, DANCING! Yay! The band, Br’er Rabbit was totally awesome and I can’t thank them enough for donating their time and talent to play for us. If you get a chance to check them out live, you definitely should. It’s a foot-stompin good time. Not only was the band awesome, but thanks to tons of people and businesses that donated to the event, the raffle and silent auction were incredible! Folks won some really great prizes anywhere from bicycles to massages. Please take a look at the list of donors at the end of this post and support those businesses when you have a chance. It was really gracious of them to help out as much as they did.

To the friends who helped plan this event without me having to lift a single finger, you will never know how grateful I am. You are beautiful people and you make the world a better place. My life is drastically easier because of you. The energy and love that you put into this night was palpable. I love you!!!

It was so fun to see all of my friends in one place. Some even drove up from Seattle just for the night. I told you, my friends are the best. It was overwhelming to see such an outpouring of love and I was amazed that I didn’t fall over from exhaustion. I actually made it until nearly 11pm! When it was finally time to leave, and all of the hugs and goodbyes were finished, I hopped on my bike and pedaled home alone. It was a quiet and somewhat chilly evening. The whole ride home I couldn’t wipe the grin off of my face. I was in pure shock at how much love was in that place for those four hours. My connection to my community and to the good of humanity felt so strong that it energized me, even though I was drained. I crested up over a hill pedaling my single-speed 1968 cruiser, and as I began the descent on the other side, a warm wind blew across my face and calmed my soul. It was like it was whispering to me that everything was finally going to be okay. At that moment, I knew that I had the power to recover. No matter what that may look like in the end, I knew it was all going to be okay. Sometimes life is a real challenge and other times it is pure magic.

Much Love,

Lyndsey

Thank you so much to the following people and places for donating to the raffle-to-end-all-raffles!

Mark and Taylor Stephens

Semilla Seeds

Liam Gallagher Photography

Blue T Lodge

Jogo CrossFit Bellingham

4 Starrs

Chuckanut Builders

Val Thompson, Massage

Karen Gerstenberger glass art

Stephanie Torres knitting

Grounds for Change

Spencer Santenello cooking class

Monique Miller jewelry

Riverflame Rolfing

Brandywine Kitchen

Laurie Rosenberg Jewelry

Jennica Lowell Photography

Daphne Ryan Photography

Brown Dog Bike Repair

Western Freedom Seafood

Fitness Gear and Training

Brad Jones, Rolfing Bellingham

Angi Weston, bike coach

Jean Wylie ceramics

The Fork

Br’er Rabbit

Lacy Kemp-E. Hedberg art

Karla Stowards and FVMBA

Trek Dirt Series

Fairhaven Bike and Ski

Transition Bikes

Sojourn

Journey Jewelry

Kat Sweet of Sweetlines

Gravity

Cascade Designs

Lesley Stoner Art

3Oms Yoga

Terrain Fitness

Chair 9

Sexton Family

Honey Salon

Jessie Carlson Art

Diehl Ford

Zazen Salon

Co-Op

The Fountain

Superfeet

Fanatic Bike Co.

Modus

Shimano

Schwalbe

Scott USA

Toni and Guy

Earl’s Bike Shop

Whimsey

Elizabeth Station

Sweeney’s Meats

Freehub Magazine

Tess and Adam

NW Cup

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Goodbye Doxy Hello Flare

Rudolph

<<To donate and help me in my recovery mission, please click the donate tab in the menu to the right>>

Well, I have been on Doxycycline for the past 3 months and it has been a wonder drug for me! My symptom list became so small and manageable that I was able to get out for multiple bike rides and socialize. Mentally, I really was feeling like me again. The down side was that I had a perpetual burn on my nose and hands from Doxycycline. I made every effort to cover my face with scarves and hats and even avoided the sun entirely on nice days (hard to do in rainy Bellingham), and I still had the burn. It’s not a normal sunburn. It’s really splotchy and never peels. It also actually burns. My hands burn so bad at night when I’m trying to go to sleep that they feel like they may spontaneously combust. Apparently, although Doxy makes skin SUPER sun sensitive, it can also cause chemical burns. I think I had a mix of both. Finally, I decided that since I was feeling good otherwise, and I had been on it for a while, it was time to go off of Doxy and give my poor skin a break. Happy Day!

Just 24 hours after stopping Doxy, the symptoms began to creep in. Yesterday began a pretty strong flare. In my opinion, it seems nearly impossible to have such a reaction to stopping antibiotics within just 24 hours. So, I can’t really say for sure what is causing the flare, but it’s happening nonetheless. It’s hard to not feel discouraged since I have had such great success lately, but I know it’s only temporary. I have an appointment with my doctor on Monday and we will get things figured out. For now, it’s really hard to wake up. It’s always hard for me to wake up. I think most people have a hard time waking up, but I have had an exceptionally hard time the past few days. In the morning and after I wake up, I am not functional for at least an hour. I physically move VERY slowly. I feel like I am stuck in slow-motion and can’t do a thing to speed it up. I am so clumsy that I can barely hold my water glass. Mentally, I have a really difficult time focusing and forget what I am doing often. It takes twice as long as it normally would to take my 3 rounds of pills in the morning. After I give myself my B-12 shot, I feel a bit better and can actually make it out the door to go to work. Of course, I have to go back to my house shortly after leaving, because I have forgotten multiple things.

On top of being slow and distracted, I have loud ringing in my left ear, mild dizziness, mild nerve pain on the left side of my face, a vibrating feeling in my sinuses and behind my eyes, shin pain, foot pain, muscle pain, stiff joints, and light sensitive eyes. All of these symptoms come in waves. I will have 20 minutes or so of feeling awful followed by an hour or 2 of not feeling too bad. I am always way worse in the mornings.

I can handle the slow movement and the pain, but what I have the hardest time with accepting is the mental aspect of Lyme. When it starts creeping in like this, I can feel my “self” starting to disappear. It’s a horrible feeling. It’s like it takes over and kicks you out of your own body for a while. I sit in blank stares often (more than I would normally do), and have very little connection with the outside world. It feels like I get lost. I can muster up the energy to pull as much of my “self” out as I can in small spurts during the day if I want to be social, but the rest of the day is spent lost.

It’s important to be aware that people suffering from Late-Stage Lyme can have mild to severe cognitive effects. I will never forget what it was like to come out of the dark when I started to get better a couple of months ago. It was like the lights were turned back on. My “self” was present and I could connect with others again. It was such an amazing feeling. Right now, the lights aren’t fully turned off again, but they’re pretty dim. But, hey, at least I have SOME light and I know that this will get better.

I am, however, a little bummed that I am seemingly so dependent on antibiotics. I have been on treatment for a year and it’s slightly discouraging to have such a reaction to taking away antibiotics (if that’s the real reason for this flare). I really hope that eventually, I’ll be able to fight this stupid thing on my own. But, until then, I guess I’ll keep up the, as my favorite uncle says, “better living through chemistry”.

To counter this slightly gray post, I will post about my incredibly successful fundraiser sometime in the near future. It makes me feel better just thinking about it. On a financial note, it is more evident to me now, that my hope for being off of meds in one year may not be reality. So, please continue sharing my blog wherever you can so that I can reach my financial goal! Thank you so much for your help! If you have any funny jokes, now is a good time to share below….

Much love!

 

 

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