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I don’t know about anyone else, but I really, really needed a vacation. I was so looking forward to this week. Every year my mom’s family has a reunion of types at our lake property over the 4th of July. It’s one of my favorite times of the year, and one of my favorite holidays. And that’s because not only am I at my cabin, one of my favorite places on earth, but I’m with my family. Family is really important to me, and the 4th is one of the few times a year that I’m able to spend time with my extended relatives. So, with all that’s been going on recently I couldn’t wait until we got here.

 

me @ lake superiorMy mom and I left with my dog Wilson early Sunday morning. The drive was beautiful. For a change of pace we drove past Duluth, MN and along Lake Superior before we continued up into Northern WI. I’d never been to Duluth before, and I’d certainly never seen any of the Great Lakes. Which is almost a sin, since we live so close. It was absolutely heavenly. The lake was gorgeous. I love any body of water, but seeing that lake made me wish for an ocean.

 

The weather was a bit of a let-down; we had dressed for a warm, sunny, summer day but by the time we reached the lake it was chilly and clouded over. We enjoyed it anyway! The pier was insanely windy, and I got shivers from the cold water as the waves crashed over my feet in the sand. I was upbeat and ready for action, but halfway through the eight hour drive I lost energy. A slight pick-me-up surfaced however when we stopped at a road-side stand to buy a bucket of fresh picked strawberries! Three days and a pie later, and we’re still eating them. So delicious! It’s amazing what local, fresh strawberries taste like. They’re jam-packed with flavor. So we snacked on strawberries and I read aloud a Aaron Elkins mystery as my mom drove us through MI and down into WI again.Mom @ Lake Superior

 

We arrived just as the rain was beginning to sprinkle again, and we quickly unloaded all of our bags and boxes of gluten-free food for the week. The rain has since stopped, but there’s a chill in the still damp air. I’m hoping it’ll warm up tomorrow, or Thursday. I packed more swim suits than I did sweatshirts! Seriously, who would plan for this weather?

 

So since we can’t be outside we’ve made due inside. My biggest accomplishment? I made a gluten-free strawberry pie out of those delicious strawberries yesterday! I’ll post pictures and the recipe I used soon. And still on the list- another pie, although this one will be blueberry and I’m reading a wonderful book that’s been nearly impossible to put down. I knew I picked a good book to read up here! The rest of my family starts arriving tomorrow, Thursday and Friday. I’m looking forward to it.

 

More later. I know, I’m due to post an update soon. I haven’t forgotten!

Peace and healing, molly

 

“Find what brings you joy and go there.” – Jan Phillips

Here’s to my dad – my constant supporter, motivator, advocate, and all around loving & amazing dad! I know I can always count on you dad, for everything. I may not always say it, but I try – thank you! I hope you’ve had a wonderful Father’s day. And, lucky you, it gets to continue on until tomorrow! Here are a few of my favorite memories over the past year or so. {And why exactly is the last current picture of you and I from Christmas? Jeez…}

 

Enjoy…

 

And here’s that link you asked me for that I was talking about last week, the Guided Meditation. Hope it helps you!

 

Love you dad!

Always, molly

 

“A father is someone you look up to, no matter how tall you are.” – Unknown

Some time ago I came across this website, The Lyme Awareness Art Project. It was shortly after I began treatment, and was a bittersweet discovery for me. The website was started by a woman with neurological Lyme Disease herself, who used her art as a way to both give herself something to hold onto during her experiences and as a way to bring attention to the real people behind the disease. It’s expanded now to have a few pages of submitted poetry and artwork by others with Lyme.

 

On the one hand, it helped me to see other people driven towards inspiration and creativity with this debilitating disease. I wasn’t alone. I mean, I knew I wasn’t. But this was like visual proof to me. I’ve found writing and artwork to be a comfort to me during my months of treatment. My creativity seems to be unclogging, to my great relief. But on the other hand finding this website was hard. Many poems were difficult for me to read. They had such anguish and pain in them, understandably. But I wasn’t ready for that.

 

I navigated back to the site every once and a while, but had mostly forgotten about it until last week when I read a posting on a Lyme support group. The member had just submitted some work to the site, and it had been put online. She was so excited! It made me think…. “Wait a minute. I could do that!”.

 

I even had a poem. In January I had written a poem entitled “How It Feels To Be Me…” for my English class. I don’t write poetry very often. I actually find it very difficult to do. I end up feeling rather vulnerable about it in the end. Writing this poem was very freeing to me though. It came flowing out, and it felt so right. And, surprise, surprise it turned out to be about living with my newly diagnosed disease. Perfect for the online gallery, right?

 

So I took the plunge and emailed my submission. I just heard back, it’s been put up online this week! You can find it here:

My Poem

Scroll down to the very bottom of the page, and it’s right in the middle. Read a few others too!

 

I hope you enjoy it. I’ll be posting it here as well. Look for a page soon with some of my writing on it.

 

Peace and healing, molly

 

“Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.” –Thich Nhat Hanh

Yes, Mayo was yesterday. And today I’m so incredibly thankful that it’s over now. I’m drained, physically and emotionally. I woke up at 5 AM, to get to the hospital by 8:15, only then to have a day of one thing after another, after another. We left around 3:30, still without having had lunch. Yes. You did the math correctly. That’s 7 straight hours of doctors. And not just regular doctors. No. These were the kind that don’t believe in chronic Lyme. Lovely… right?

 

But I’m getting ahead of myself.

 

My first appointment was the best of the three. I met with an ophthalmologist who had been in contact with my eye specialist about me. Turns out that he and my dad worked on the street around the same time in the 80’s at the hospital. It’s a small, small world! So in-between their exchanging of stories he took a look at my eyes. Long story short: He thinks my eyes are almost 100% better! The inflammation is barely discernable! What a miracle. Something went right. He is of the opinion that all of my intracranial pressure problems and optic nerve swelling is solely because of the Doxycycline I took for a little over a month in January/February which is from the family of Tetracycline antibiotics that is actually known to cause this reaction in some people. We knew this had been a possibility, but because so much time had passed since then most people we had seen weren’t comfortable with it. This is GREAT news however! It means I won’t have to have any kind of surgery to get a shunt placed. I keep reminding myself how GOOD this is! Thank God!

 

So, with that, onto my second appointment. It was with a Nurse Practitioner who was an Infectious Disease specialist in the Pediatrics and Adolescent Medicine department. I just had a bad feeling going into this one. Long-standing Lyme Disease and Infectious Disease Doctors don’t mix well. At all. But I took a few deep breaths, and tried to hold out for a positive experience. By this time I was starting to lose what energy I had managed to sum up for the first appointment. I was so tired. My head hurt, and my eyes hurt from when the last doctor had kept pushing on them to prove a point {inflammation}. Yeah, you read that correctly too.

 

As soon as she began talking to us however I knew this wouldn’t be a positive experience. She knew next to nothing about Lyme as a persistent infection. My friends know more about Lyme than she did! She asked me if I had pain in my knees, had ever had a rash, and insisted that she had never heard of Lyme being passed congenitally. She worked hard to get a timeline from us. And she wanted to know my symptoms. Well, I was prepared! Remember my symptom list that took me so long the night before the appointment? I pulled it out, and groaned internally as I saw the look on her face. My opinion: She didn’t believe it. Or me. She wanted “a current” list. So I insisted that I written that list just the night before. She breezily moved on.

 

I did feel bad for her. She wasn’t in a pleasant situation with her 17 year old patient and my mom throwing out our own research, facts, and small statistics. As a practitioner it can’t be easy when your patients have the upper hand when it comes to information about a disease, whether you believe them or not. She couldn’t understand how I was being treated with the Lyme test results I had. {I’m only positive on one band.} She hit a sore point with me too by bringing up school. I don’t care what she says, I do go to school even if it is in my own home. Don’t tell me I don’t. I’m sorry.

 

She went to talk with her doctor about my “situation”, and came back a short time later. They had decided that in their opinion it would be best if I could be retested for Lyme, Bartonella {I had showed her my rash and had said I was being treated for it.} and another infection called Ehrlichia. That way I could rule out Lyme and prevent unnecessary treatment if they came back negative. Where, at this point, my mom and I once again talked about the high chances of negative test results since I had been infected so long. I’m sure she thinks we’re all crazy. She was much more in favor of treating my fibromyalgia. That she knew about. But, I digress. Because of our own concerns, we chose to skip the Lyme blood test. If we redo it, I’d much rather do it through a lab my LLMD trusts. We did agree to do the two other tests though, and we should hear their results in a few days.

 

By this time I was just done. I didn’t want to deal with her anymore. I didn’t have it in me. I was glad to be done with that appointment. Only one more to go. Last but not least, on to my Neurology appointment. The doctor was nice enough. She too was very interested in my timeline, took extensive notes, and even examined me. She didn’t like the Lyme diagnosis either. But she took notice of my symptoms. She tested my muscle strengths, my reflexes, and my balance. And I assume they all came back pretty normal because she didn’t say a word about them. I felt as if I were shaking like a leaf the entire time she was testing me, but she said she didn’t feel it. I felt as if I teetered and tottered when I walked one foot in front of the other, but she didn’t seem to notice. Many of my symptoms like that are subjective.

 

She agreed with the first doctor, saying that she too was comfortable with the Doxy being the cause of my problems that sent me to Mayo in the first place. And she took the time to explain how this happened. Which we greatly appreciated! But she was concerned about all my other symptoms still not being resolved. Her recommendations? She wished I would retest all of my neurological and inner ear dizzy, balance, and sound issues. Perhaps they’ve gone away? Or gotten better? Or worse? She didn’t know. But she wanted them to be checked out again, just in case. I don’t really want to deal with that right now. What I went through six years ago when we found out I had a 50% deficit in my left inner ear was enough for me. I blocked most of it out and don’t remember it. So I don’t know if we’ll do that or not, but it was what she recommended. She also felt {like so many countless doctors before her…} that this could be a physical expression of depression and I could benefit from some counseling. Something may be wrong in my life that my body is trying to draw my attention towards, she said. But again, she didn’t know. And I almost cried. I say almost because I held it together enough until after we’d left her office.

 

I’m sick of people telling me I’ve got to be depressed because of what’s happening to me. I’m tired of nobody believing me when I describe my symptoms. Instead doctors have accused me of lying, of cheating test results, of making up symptoms, all to get out of school or to get attention. I swear that half of my pent up emotions are from doctors thinking these things. I almost cry just thinking about it. I know that I’m sick. Why can’t these doctors see it too? My family does. My friends do. My LLMD does, and I’m thanking God. I’m so blessed, so lucky to have doctors at home that believe me, that trust me, and that I trust to treat me. I need them right now. I need to continue healing, and to get better. Just as the Neurologist said, I don’t want to be stuck in a rut of ill health all my life. Those that think I would want that are the crazy ones, the insane ones. Who would choose this? Not me. I don’t choose it. I just make the best of it.

 

And so, I’m concentrating on the good news. This means I shouldn’t be put back on any of the Tetracycline antibiotics, but there are plenty more to choose from I think. We’ll keep an eye on my eyes, and if I feel my pressure going up again we’ll re-access. It may be another medication reaction, since we now how sensitive I am to them. But for now, I’m tired, I’m beat down, I’m sore, but I’m happy. I’m thankful that at least some good came out of yesterday’s ordeal.

 

Peace and healing, molly

 

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Author Unknown

I knew tonight would come. The night before I’m seen at Mayo. Whew. I never thought I’d have to say those words. And as I think them now I’m experiencing mixed feelings. I’m nervous, hesitant, curious, and altogether ready for this to be done with. It sure is an adventure however. That much I must admit!

 

One of my main comforts is all the people supporting me, thinking of me, and praying for me. The love is overflowing in my heart. I’ve got some amazing family and friends. I know I’m strong. I’ll make it though this adventure, but it won’t be because of only myself. No my friends, the credit must be shared. I insist.

 

I’ve just finished spending over an hour working on a complete symptom list and medication/supplement list. My list of supplements and medications was too long to fit onto the space allotted on the form. And not only did I list what all I take, but I listed what each supplement’s purpose was. So, am I ahead of the game or am I totally off the playing field? My symptom list is more expansive that I’ve ever done in the past. Those doctors tomorrow better read it! It took me too much time for them not to. I knew that I had to make some kind of a list for them about my symptoms. I can’t ever remember them all while a doctor is staring at me and questioning me. So, I’m giving my poor memory a break. I hope! I’ve made five copies of each. Think that’s enough? Too many doctors to keep track of, I’m telling you.

 

Anyway – I’m hoping for the best, and as a friend reminded me, I hope they find nothing other than solutions for me tomorrow. I’ll update as soon as I’m able! Wish me luck tomorrow, I’m Irish and you know we can never have too much of that.

 

Peace and healing, molly

 

“People deal too much with the negative, with what is wrong…Why not try and see positive things, to just touch those things and make them bloom?” – Thich Nhat Hanh

Just as I was stressing out this afternoon because my laptop speakers mysteriously stopped working and I couldn’t hear my Chemistry lesson and had wasted an hour trying to fix them, the doorbell rang. Of course, I didn’t answer right away. I never do. Maybe they’ll just leave the package and go! It happens…

 

But I’m so glad I answered the bell this time. It was an absolutely beautiful flower arrangement for me sent from my Grandma and Antie Pam in California. Thank you SO MUCH! I love it, and it was just what I needed to cheer me up today. How did you know two of my favorite flowers are sunflowers and Gerber daisies? And the red rose for love is lovely. It’s perfect :)

 

Every time I’ve looked up from my computer this afternoon and saw my flowers I was reminded of all those who are thinking of me, sending me love, and wishing for a good day tomorrow. Thank you to all of you!

 

Take a look at my flowers! And I’ll be back with an update tonight before the big day tomorrow.

 

Flowers sent with Love

 

“Keep love in your heart. A life without it is like a sunless garden when the flowers are dead. The consciousness of loving and being loved brings a warmth and richness to life that nothing else can bring.” – Oscar Wilde

Recently, I’ve been asked by friends and general concerned folks about what I’m feeling and thinking now that I’m headed to Mayo this week. The only answer to pop into my mind? “I… don’t know…”

 

They wonder, am I scared? Nervous? Anxious? Happy? And I tell them, I wish I could put my finger on what it is I’m feeling. I think it will really hit me Thursday morning as we drive up to Rochester what it is I’m in for. Perhaps I’ll have a handle on my feelings then. But now? My rational, cool, calm, and collected side is coming out. Sure, I’m nervous, and scared. I would be crazy not to be. {I have done my googling, after all.} But all the same I feel as if I’m drawing on some inner source of power to help ground me these days.

 

Last week I found a free guided meditation audio clip. I’m drawn towards positive affirmations lately. And I can spend hours searching, pouring over quotes to uplift me, inspire me, and offer some food for thought. But meditation is something I’ve always wished I enjoyed more. I’ve tried to learn, but it takes time and practice. So, I gave this one a shot. Worth a try, right?  And what do you know – it was amazing. I felt free, calm, and happy. I realized a smile had appeared on my face. It was shorter than 10 minutes in total, but I can still feel those sensations I had as I was lost in the beautiful images and words being spoken to me.

 

I’ve found myself closing my eyes and simply breathing since that episode last week. In, and out. Deep breaths. I can hear the cars driving by down the street, the clock ticking in the kitchen, or Wilson barking in the back yard. My mind is clear, and in the exact present moment for just a time. It’s simple meditation. But I’m doing it. And yes, I can tell that somewhere inside myself are those emotions I felt the other day. And it’s such a beautiful feeling.

 

I’m hoping, and praying that I remember to take a couple spare moments at Mayo this week to take a few deep breaths. Perhaps I can find that grounded feeling, for just a moment, when I need it most.

 

I can feel the stress and the physical symptoms taking a toll on my body. Going off my medications has been tough going the past few days. My stomach is a mess. I’m having weird, random nerve pain, tingling, and numbness. I’ve got a headache that comes and goes. I shake like a leaf. And I’m tired. So incredibly tired. One moment I’ll be fine. And the next I’ll have pushed my limits. The line is not only gray, but blurry when it comes to my limitations and that I’m not used to.

 

Peace and healing, molly

“Change the way you look at things and things you look at change.”  – Dr. Wayne Dyer

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