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Last spring I celebrated my high school graduation with you. It was a huge accomplishment for me, and your support along the way was amazing! Your support of the blog, of me, and of my story has changed the way I live with Lyme. Truly.

I consider myself one of the lucky ones. I have a treating doctor; I have everything I need to heal – antibiotics, supplements, herbs, family, friends, and the list goes on, and on, and on. What I struggle with is the need for time. Lyme doesn’t follow a schedule. There is no end date, no final deadline. It just is.

This last year has been an exceptionally hard one for my family and I. It feels like blow, after blow has fallen upon us. I won’t go into the details but I’ve been shown how strong my family is. We have hope and we have courage.

They are an inspiration to me. And they are one of the reasons that I have been given the opportunity to take this school year off. I’m taking an entire year and dedicating it to myself. My priority is to heal. I’m giving my body what it’s screaming for – time.

I’m giving myself time when I feel that I need it. I have the luxury to truly listen to my body, and I’m grateful for it.

However I also want to enjoy this time.

I’m marking events on my calendar. I’m teaching preschool. I want to write, to learn, to create. But most of all I want to be happy. I want to look back at this year and not regret my decision to put off my schooling. I want to make this year worth it.

I can’t let it slip through my fingers…

And that leads me to my big announcement!

This month I opened my own Etsy store. I’ve always been creative in one way or another. My passion has been jewelry making. Years ago while I was in middle school I started my own business – I sold the jewelry I made at two local gift shops and my mom toted me and my work to craft fairs. I loved it!

My parents have always supported me, and they taught me that I really can do whatever I set my mind to. Well I figured that if I did it then, I can do it again now, and better!

My new store is called Seeking Serendipity. Please, follow the link and check it out!! Your support will mean the world to me. Keep an eye on the shop – new items will be added as I complete them!

I’m taking a leap of faith…

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… and hoping it works out!

My goal is to offer an opportunity to purchase an upcycled, stylish and completely unique piece of jewelry, handmade by me! I handcraft paper beads out of repurposed papers and seal them with a ton-toxic & water based sealer. My beads are both totally unique and eye-catching! PErfect for an earth-friendly lifestyle.

Looking for one-of-a-kind jewelry this holiday season? My paper bead jewelry could be the answer you’re looking for. Or, maybe you’ll find that perfect gift idea at the Lymenaide Holiday Bazaar! I’ll be joining this event soon – and I’m excited to be involved! Check us all out, and support those in some way connected with Lyme Disease.

Spread the word!

More from me soon,

Peace & healing,

molly

 

“Sometimes you just have to take the leap and build your wings on the way down.” – Kobi Yamada

Tomorrow is the big day. It’s the day I’ve worked to earn for the past four years, no matter how impossible it felt. Tomorrow I graduate from high school!

I could cry. I honestly, seriously, could cry. I was told two years ago that there was no possible way I would ever be able to catch myself up enough in order to graduate with my class. I wanted to prove to myself that even with my health in the state it was, I wasn’t going to let my life get pulled out from under me.

I needed to prove to myself I could do it. And, I have. I did it. I worked at home with tutors, through summers, and online in order to complete high school and still continue my treatment. I know my family and friends are incredibly proud of me. And I’m genuinely proud of myself.

I couldn’t tell you how I did it. I wish I had a secret to pass on to those others working though high school with chronic illnesses. The last two years are a blur. But tomorrow I’ll don a royal blue cap and gown and walk across that stage. I know I won’t have to remind myself to smile!

I’ll be back with a celebratory post as soon as I can.

Thank you for your continued support; it has meant so much!

 

Peace and healing to all!

molly

 

“Success means having the courage, the determination, and the will to become the person you believe you were meant to be”           – George Sheehan

I’ve been telling my mom for months that she should do a guest post here. Months, I tell you! And I had thought that my ahem “hints” had fallen upon deaf ears. I have news: they didn’t! She surprised me last week with this and asked me to share it with you.

Mom @ Lake Superior_2

 

First, let me introduce you to Laura Murphy, my mom. She’s been in Lyme treatment herself since last Fall after being chronically ill for over twenty years. And she’s one of my best supporters.

I could write up a mini bio about her myself, but I thought, “What fun! I’ll use her Twitter bio!”.

Here’s what she says about herself: Married 30 years, mother of three, charity thrift store manager, Lyme-fighter, loves to read, write, garden, bike, & cook gluten-free semi-vegetarian yumminess.

Enjoy!

Damned if you do and damned if you do

The insidiousness of the Lyme spirochete continually astounds me. As if it’s not hard enough to deal with the daytime struggles, annoyances and outright outrages, they must creep in like the vermin they are and infest my nighttime slumber, my peaceful port in a storm: my dreams of health and vitality. My vision, at night at least, of myself as a normal, healthy, functioning person. Damn the buggers! It’s “Lyme in Action” in a dream (cue the dream sequence)…

(Now this part is the dream!) For some reason, I had decided to take a class at the U. Psychology, to be exact. So when I got home from work, I threw what I needed in my back pack, jumped on my bike, and pedaled off to school. When I got there, I hung out in some fictional version of a student lounge, with a lot of other, much younger, students, while I waited for class time. Suddenly, I realized that I had finished the semester in Psychology and had neglected to sign up for the next semester! Panic shot through me! My immediate thought was that I had to quickly go sign up and pay for the class before it started. So I looked around for my backpack, but it was nowhere in sight. The other students helped me look around too, but it had disappeared. My first thought was that my wallet and credit cards were in there—more panic! I knew I had to call my husband to tell him to cancel the cards. I tried to find a security guard to report the theft to, but the only person I could find was a young girl who was some sort of a help desk attendant. I told her what happened and asked for a phone to call my husband. She handed me a tiny keychain-like device that appeared to be some ultra high-tech phone that I couldn’t figure out. I asked her for help and she rolled her eyes and sighed, as if old people like me were so helpless. I began to create a scene. After all, I was the victim of a crime, and all I’d like to do is report it and get some help, for Pete’s sake. I shouted, I stamped my feet, I became really angry. There may have been wild gesticulations; a crowd was beginning to gather. Finally an official of some sort with a uniform and a radio came over. Help was at hand! But just as I was explaining about the theft and the lack of assistance and the deplorable state of affairs at the U, I realized with a sinking feeling that my backpack was actually hanging on my shoulder. Gulp. No one had noticed it. Not me, not the students helping me, not the unhelpful help desk person, not the security guard. Good, I thought, with relief….so with my face beginning to turn red, I shouted “Fine, I’ll take care of it myself!” and made a hasty getaway.

Sigh. Stupid things happen to me in real life, and stupid things happen in my dreams…Is there no escaping this wily bug? So the next time you find yourself in an argument with someone in the throes of self-delusion, who insists that she is right and everyone else is WRONG, WRONG, WRONG—stop and think. Be kind. Perhaps she has Lyme disease and even now is wondering how she can possibly extricate herself from this one. Be kind.

At least we can laugh—afterwards. Right?

~ Laura

Oh, what would I do without you all? Between those who follow the blog, my best friends, and my amazing family I truly have a wonderful support system. All week I’ve been feeling the love. I can feel the prayers, and intentions. And they make me stronger. Knowing I’ve got so many on my side, cheering for me, and walking with me as I travel my journey is not only just strengthening, but so reassuring.

THANK YOU!

I love you all, more than I can say.

Now – I came to the conclusion years ago that my world was different that most. Some of you can (unfortunately) empathize with me when I say that mine is a Tilt & Topple world.

“Hi. My name is molly and I’m dizzy!”

At any moment I can lose my balance. The room can swim around me, or I can suddenly be swimming myself. Walls can become my best friend and ceiling fans my arch nemesis. I’m careful not to bend down too quickly. And, I’m always aware of how my weight is balanced. Stairs are sometimes a tricky feat but then again, so is walking in general.

I’ve gone through vestibular therapy and training – twice- and lived to tell about it.

Bright and early tomorrow morning is the dreaded tilt table test. Yes, I have little doubt that tomorrow my world will seem Tilt & Topple once again. Sigh. I can’t avoid the tilt. Let’s just hope I don’t topple!

I’ve promised myself that I won’t lie here – to myself or to you. So I fully admit that I’m nervous. So nervous. I know that I’ll be fine, but I remember the way I felt when we first began to suspect POTS and I don’t want to feel that way again.

Weak. Lightheaded. Confused. Helpless.

Not to mention the nausea. Oh goodness. I’ve been more nauseous than usual lately, and the more dizzy I become the more nauseous I get! (We stocked up on lemons – warm lemon water is a wonderful nausea reducer. FIY.)

I don’t even know what I want the results of this test to be. Do I want to have POTS? It would help explain a lot! I don’t want another diagnosis to deal with though. But what would it mean if the test result is negative? I just don’t know.

My motto is: When in doubt think positively and never lose hope.

School begins in a week. I checked, it’s the 8th. For weeks I’ve put off looking up which day it is that I start my senior year, hoping, and yes perhaps clinging to the idea that if I didn’t know the actual date my lingering last weeks of summer would last longer. If that piece of logic escapes you, please don’t ask me to explain further. I’ve often been told I have a very original sense of logic. I like it, it suits me just fine!

 

As I sit here writing this I’m up at my cabin for the last time this summer enjoying a relaxing weekend escape. My dad jokingly kicked my mom and I out of the house on Friday morning, taking the opportunity to work on a few projects around the house.  My brother’s wedding is sneaking up on us in a few short weeks and we’ve got plenty to do still! Obviously my mom and I had no arguments and gladly escaped! The weekend has been a wet one, with rain almost every day. Since rain = pain I’ve been a little uncomfortable, but it’s been nice all the same.

 

We didn’t arrive here until late Friday night, but luckily I’d packed enough gluten-free snacks for the car that we didn’t have to stop to eat on the way. We’ve gotten sick too many times trying to do that. We’re learning, slowly but surely. Then as we ate our small dinner that night we caught the amazing Packer’s pre-season game!! Yes, it was amazing. I screamed so much I was afraid I’d go hoarse. You’ve been warned – I am a Green Bay Packer fan, and I’m proud of it. And yes, I do live in Minnesota the new home of Brett Favre. But, I’m not going to go into that here – I really just enjoy watching the games, not talking about the politics.

 

Yesterday we spent the day inside, snug and cozy watching a few Alfred Hitchcock movies (my favorite!) and reading our books. What would a vacation be without some reading time? Then, a delicious dinner and we spent the evening listening to my cousin play at a local bar. That was so much fun! I love listening to him play, and it was fun to hear some new songs from him. I’m impressed with myself too though. The bar was loud, had ceiling fans, and cigarette smoke. All of which I have issues with! But last night, I had a great time and only had a few minutes where things seemed overwhelming. I spent much more time laughing, smiling, and clapping than I did thinking about how I was feeling. It was nice to get out, and let go for a night. Usually I’m very aware of how I’m feeling at any given moment. And it gets tiring, ironically enough.

 

Today I did feel a little worse for the wear, sleeping in late and waking up in pain. But today was an important day. Today was the day we decided that I would start the Cumanda tincture I’ve talked about. I’m not sure what to expect, a huge herx or nothing. Either way, I’m taking a super low dose of 1 drop twice daily to begin with. On Wednesday morning I’m going in to have my co-infection panel. We’re hoping that the Cumanda will help bring out a reaction in my immune system that will show up in the blood test.

 

I’m praying, for what I’m not exactly sure but I’m praying about it all the same.

 

It’s been a nice weekend, but it ends tomorrow morning. Back home and back to summer homework for me. I’m thankful we got the chance to make it up here once more though. I love it here. It’s very grounding for me. I seem to get lost in the time I spend here. It slips by so fast! And I’m glad I got the chance to spend some time with my great grandparents today too. One small hiccup- it was too cold to swim! This is August still, I should have been able to swim! But, no. The weather certainly didn’t cooperate.

 

Peace and healing, molly

 

“Love life, engage in it, give it all you’ve got. Love it with a passion, because life truly does give back, many times over, what you put into it.” ~ Maya Angelou

rain … Come again another day! Or, you know, not. That’s good too. My mom and I commiserated this morning over our rain/weather-induced pain. I just hurt. I ache. At times, I even throb. My head feels like it could pop right off at any moment from the pressure. My energy levels are spent. Today is one of those days that I was hoping to get a lot done, and I haven’t yet accepted the fact that most of it won’t happen. Instead I just want to make my new favorite popcorn {black pepper!} and curl up in a pile of blankets with my new DVD set of Hitchcock films. That sounds nice, doesn’t it? Days filled with dark, stormy, wet weather and high humidity levels are energy-sucking days. I don’t function well in weather like this. Yesterday I was surprised how “normal” I felt in spite of the tornado weather and unrelenting rain fall. Today, I’m taking the beating.

 

And do you know what the kicker to the rain is? The sound of the constant water falling to the street in sheets, hitting the windows, and over-flowing from the rain barrel outside the window is actually making me have to pee even more! Now not only is my inflamed gut pushing down on my poor bladder, but the rain is like a mental trigger each time I stop to enjoy the tranquility of the sounds! Let’s hope I don’t pee my pants from laughing at this little irony.

 

To fully distract myself I’ll move on to another subject. Yesterday I shamelessly dangled a hint of my good news in front of your eyes. For those, like me, who might need a reminder: I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Are you ready? I won’t tease you anymore! I invite you to help me celebrate:

 

I’m absolutely ecstatic to announce that yesterday we found out that my eyes are 100% back to normal!!! No more hemorrhages, no more inflammation, no more anything! No more signs of any increased intracranial pressure whatsoever! My wait in the waiting room was longer than the time I spent in my appointment. It was in and out, quick and easy, painless and full of only good news! I would go to the doctor every day just to hear only news of good health. Wouldn’t you? It was a nice, refreshing change for me. And I’m relieved! After looking at my eyes yesterday my doctor said, “You really had me worried for a while there!”.

 

Saying that this is good news is an understatement. I’ve been through so much with this since February. I’m ready for this to be over. I’m ready to get back on track in treating my disease! After an ER visit, 3 eye doctors in addition to my LLMD, and MRI and a MRV, 3 spinal taps, and a visit to the Mayo Clinic I’m actually done! I can hardly believe it. All those months of pain, of confusion, of worry and test, after test are resolved. And to think it was all caused by just a month of Doxycycline in January and was exasperated by a rare side-affect of months of Levaquin. No one thought it could be the antibiotics because I had stopped the Doxy so long before my symptoms occurred and Levaquin wasn’t even considered to be the cause of the problem. No one expected that it would take me almost a full 7 months to fully recover if antibiotics were to blame. But, turns out they were and it did take me that long to come to the place where I’m at now.

 

I’m so incredibly thankful for all of those who helped me get through this! My parents and my family were amazing. They truly are the pillars of my support system, and my wonderful friends were there for me at every twist and turn down that long road. My doctors however, deserve so much credit. Without my LLMD’s attention to detail in this situation I could have undergone surgery for a shunt to release the pressure. Thank God I didn’t go down that route needlessly. And thank you to all of you who read this blog. Knowing that you were here and listening to me as I traversed this obstacle made all the difference.

 

I’m slowing dosing down on my Diamox, and in a month I’ll be completely off of it. I can’t wait! And in 2 months I’ll see my eye specialist again just to check on how my body is handing being off of the medication.

 

Peace and healing, molly

 

“If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.” ~ Rabbi Harold Kushner

Just wanted to give all a heads up! I’ve got my monthly-ish appointment with my LLMD {very early} tomorrow morning. I feel unprepared for it, but we’ve been waiting for this for a few weeks. So many little things have piled up symptom-wise, and I of course, forgot to write them down. I’m doing my best to remember them all tonight.

 

It’s been a rough few days since late last week. I was able to have fun over the weekend though. My soon to be sister-in-law had her shower on Friday, and my aunt and grandma were able to make the trip up to come too. It was a lot of fun! We met and mingled with a lot of her family, played some games, and enjoyed ourselves. I was pretty overwhelmed by the time it was over, but it felt good to be there. Then on Saturday we found time in between the rain storms to get the St. Paul Irish Fair. It’s one of my favorite summer events, and I look forward to it so much! This year we got there in time to hear Romantica play, which I was hoping we would. That’s probably the only concert I’ll make it to all year! I only lasted a few hours, but again, it felt good to be there. We were frustrated by the lack of gluten-free foods available though. I made do with french fries. Of course they didn’t have corn beef and cabbage, that would have been perfect! And I’m still confused as to why they didn’t…

 

However, this week I’ve taken it easy. I’ve barely gone a day in the last two weeks without abdominal pain, and it’s been getting worse. Today was better, so that was a relief. I’m having chest pains almost every day as well. They come and go. And now more joints are bothering me. Today my wrist and elbow acted up. Totally new symptoms. So these are all things to report tomorrow.

 

I’ll post an update as soon as I’m able to!

Peace and healing, molly

 

“May the saddest day of your future be no worse than the happiest day of your past” ~ An Irish Blessing

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