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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
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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

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

The date it set; we’ve got my appointment at Mayo scheduled. June 18th is the fatal day {if I’m remembering correctly}. I’m led to understand that I’ll be seen first by an ophthalmologist, next a neurologist, and last but not least an infectious disease doctor. I think they’ll be working as a team to diagnose me, and hopefully help figure out what’s causing my high spinal pressure. So I’ have to be at the hospital at 8 am, and I’m expecting a full day of discussions and most likely more tests. Oh lucky me.

 

My LLMD wants us to mention the Lyme Disease and Bartonella co-infection to the doctors. She knows that they’ll probably ignore it, but better to be safe than sorry. They may, just may, listen this time. It could have some connection, and she doesn’t want them to discount the fact that an infection could be the cause of the raised pressure. Plus, I have the physical proof of the Bartonella. I have the rash on both hips, behind both knees, and on my chest. The lines on my hips have visually decreased {by a little less than half their size} in the past few months since I began an antibiotic that targets the infection. My LLMD is thrilled, as am I! And, eventually Mayo will have to step up and accept the diagnosis  and existence of Chronic Lyme Disease. I’m sure of it. It’s only a matter of time.

 

I’m actually nervous about these appointments. Lately I haven’t been when it comes to seeing a new doctor, or starting a new treatment. There’s been so many of them. But, this time it’s a lot to take in at once. I’m not sure what to expect either. I don’t want them to find anything, but at the same time I need them too. We need to know what’s going on so we can treat it. But, the thought of another condition to live with and come to terms with is daunting. I’m hoping, and telling myself, that it’ll be fine. I know I’ll make it through it. That I’m sure of. It’s the waiting, the anticipation, and the vast array of unknowns that I’m going to have troubles with.

 

I’ll update more tomorrow,

Have a wonderful Memorial Day!

Peace, love, and healing, molly

 

“There are things known and there are things unknown, and in between are the doors of perception”
      ~  Aldous Huxley

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