Thank God That’s Over

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

*5 Months*

Today makes it 5 months since I began my Lyme treatment. I started on the first of January. I remember taking my very first dose of antibiotics and typing my first blog post that night. It felt right, sort of hope for a new beginning in a new year. I didn’t even think about how easy it would make it for me to remember as the months went by! So, I’m mentally congratulating myself for remembering to pause today and think about my journey so far. Living in the moment is my newest goal. 

 

So much has happened and it’s all happened so incredibly fast. I remember only parts, pieces really, of the past 5 months. I expected the herxs, and the setbacks. But I never thought I would be where I am today. So much is up in the air. I’ve got an appointment at Mayo in weeks, beginning a new therapy {Craniosacral}, starting new supplements {samento/cat’s claw}, and am starting summer courses in a week. I’m struggling to keep my symptoms at bay, and am learning how to live with them. I’m coping, and I’m not letting this disease take away too much from me.

 

I think… that I’m in a good place actually. Here I am listing off some of the most important things on my mind, and yet I know I can handle them. I know I’ll make it through. I’m happy, odd as that sounds. I’m supported by my family, and friends. I’ve found inspiration in all crevices of my life. And I’m learning how to use positive affirmations. I’m trying to live with a positive attitude. It comes naturally to me. Being positive, and accepting reality are hard to fit together. They’re like puzzles pieces that look like they might fit, but try as you might, turn as you will, you simply can’t find that sweet spot. It’s there though, you can feel it! And I can, I can feel it. So it’s part of my adventure now. Finding that sweet spot and fitting all the pieces of my crazy, confusing life together and finally seeing that bigger picture.

 

Peace and healing, molly

 

“One way to get the most out of life is to look upon it as an adventure.” – William Feather

Happy Birthday To Me!

Yep, I’m officially 17 now. It snuck up on me, I’ll admit it. I’d forgotten that it was even so soon until last week. (Lyme-brain!) But sure enough, May 4th has come and gone.

 

I had a wonderful time, however! As my aunt said on the phone tonight, somebody up there gave me the best present. I felt good, almost normal all day until I began to fade around 8 pm before dinner. I woke up later than usual, and plenty sore from all that walking at the Living Green Expo. But, I took the day slowly enjoying every minute of energy and mental clarity. What a joy! I’m so thankful I was able to truly enjoy the day. It was very low-key, but that’s just what I’ve needed lately.

 

My brothers weren’t able to make it home for the celebration tonight, but Tara did! Before dinner my dad made calamari and mussels bought fresh today. And for dinner we had, as I requested, fresh grilled salmon, asparagus, and my favorite wheat-free noodles. My mom made me a beautiful chocolate gluten-free cake with drizzled chocolate and strawberries for desert.

 

Matt and Becky had flowers sent to me over the weekend since they’re in Peru now. They’re absolutely beautiful! I love getting flowers in the mail! Chris and Tara have promised to take me golfing this summer, which I’m so excited about! I got clubs a long time ago but was never feeling well enough to use them. I’m hoping this summer we’ll find some time when I’m not too dizzy. My parents were generous to give me a new cookbook full of baking recipes, as well as “The Cake Decorating Bible”. Guess I’ll have to practice soon :) They also gave me a book documenting Peace throughout history. It has some amazing pictures and quotes that I’ve seen just from paging through it. I can’t wait to have the time to read it. However, I think I’m the most excited about my new eco-friendly SIGG water bottle! I’ve been coveting all of them I see out and about, and love the “Reduce, Reuse, Recycle” design on it. Oh how well my parents know me!

 

Cards arrived from family in WI and CA, and well wishes were sent to me on Facebook and my Lyme support groups. Thank you So Much everyone, you truly made my day!

 

As a friend said, “Here’s to a year of healing and wellness!”

 

Peace and healing, molly

“Our birthdays are feathers in the broad wing of time.”  ~Jean Paul Richter

There’s Just So Much To Say!

I don’t even know where to begin. This weekend has been so incredibly jam-packed with fun and inspiring events I only hope I can relate them all accurately enough!
Let’s see… where to start…

 

Well, actually a good friend of my mom’s is also going through treatment for Lyme right now (as well as her two sons who, like me, got it congenitally) and she set up a local showing of the movie Under Our Skin. I knew that I couldn’t watch it yet, but I was thrilled that there was the opportunity for my family and friends to go and see it. And they did! My parents, my best friend Emily, and her mom (my Girl Scout leader) all took the time to go and see the documentary. It really means so much that they were able to. I’m hoping this will bring more of an understanding of what I’m living through right now as they continue to support me through my treatment. Hopefully there’ll be another showing soon and I can send in a few more friends and family. I’d love to see it soon myself as well.

 

For those of you who haven’t heard of it, Under Our Skin is a documentary exploring the “untold story of Lyme disease” which has received some serious acclaim in the Lyme community for it’s real-life truths. Check out www.underourskin.com to learn more and see the trailer.

 

So that was yesterday afternoon, and afterwards I was able to spend the rest of the day with my best friends. It was wonderful. I hadn’t realized how much I needed to see them, and to have that dose of social interaction and normalcy. Sure, we talked about my spinal tap and how emotional the movie was for Em. But we also threw in some much-needed conversations about proms and football seasons. And, I admit it… I cheated on my diet, threw caution to the wind, and ate a slice of pizza! Ack! We capped the night off with the first bonfire of the year. One of many, I’m sure.

 

Today was exciting as well. It was the last day of my Preschool of Religion where I’m a 4 year-old teacher. We had a procession into church to honor Mary with flowers, and held a year end concert for the student’s families. I had such a blast teaching this year. It’s something I look forward to each Sunday. I hate waking up early, and often don’t feel well. But I know that it’s worth it. I love every hectic-filled minute. Ok, ask me that again in September and I’ll probably deny it!  But it always is so hard to say goodbye to all my kids at the end of the school year. I think I grow more attached than they do! However, the concert went off relatively smoothly and ended in them singing me Happy Birthday and presenting me with the largest balloon I think I’ve ever gotten. I love it! I’ll have to take a picture and share it tomorrow :)

 

After I escaped that chaos, I entered another.

 

This weekend was The Living Green Expo! It’s an entire weekend at the state fair grounds filled with food, vendors, and music all promoting and celebrating living green. I had a blast, and picked up a few needed necessities: some pins for my computer bag, a few soaps, a couple of reusable shopping bags (like we needed more!), and some great bumper stickers. My mom took information about getting another rain barrel, and I’m completely in awe over what I learned about green roofs. I really wished I could afford some of the hemp clothing, but I just looked instead. I could only stay a short while, but I soaked up the atmosphere. The handy-dandy collapsible cane did come out, but pretty near the end of my stay there. So I’m impressed with myself.

 

Overall, I’m glad I pushed myself this weekend. I’d so much rather be tired and worn out after having such great adventures, than sitting at home wishing I felt better.

 

More soon.

Peace and healing, molly

 

“Take nothing but pictures.
Leave nothing but footprints.
Kill nothing but time.” – John Kay

 

Seriously, What Happened To This Week?

I don’t know where the days went. It was Tuesday, and the next thing I know it’s Friday night and I’m exhausted. Well, that seems to point towards me having at least an exiting week. Which I did, I can verify that for ya. =)

 

But anyhow, lets see what did I do? There was a Girl Scout leader meeting that Em and I went to on Monday night. We publicized our camp a bit, so that was fun. And chatted, of course. There’s always more planning to be done. Let’s see what else…. Oh, ok I had a chiropractor appointment mid-week or so. That helped my migrates so much. Suddenly I could move my back freely and breath easier too. I’m just amazed every time I go back. My headaches are much improved from this time last week. I’m, needless to say, happy about that. Then I had a few days of internet-inactivity/mind-numbing frustration. It’s up and running now… but it and I haven’t found a mutual appreciation yet. We’re working on it…

 

Then Tara had a dress-fitting for the wedding. That was so fun! A little crazy and stressful perhaps, but it was nice. Tara brought over the dress she ended up buying this afternoon though. It’s so beautiful!! I can’t wait to see it on her. It’s absolutely perfect for her, a mix of everything she wanted. And, it’s vintage! She’s thrilled, it was so fun seeing her face as she showed it to me. I got to try out my bridesmaid dress too, which I love! It’ll be green and it’s so cute. I’m happy with it. Both Chris and Tara thought I’d like it. They were right!

 

And tonight, my goodness was there excitement. I was able to hang out with Dan and Gracia at the mall for a few hours. To be perfectly honest, I was just relieved to be out of my house! But, it’s been over a month since I saw Gracia last. And that’s a long time not to see your best friend! So it was awesome to see them, I was so excited I barely got any work done today (but shhhh….). Ahhh, normality is truly bliss.

 

I think overall, it was a great week but it was a rough one. The rain had me nearly couch-ridden for a few days there. Something about the change in humidity I think, it always makes me hurt so much more. I’ve been much dizzier, and nauseous this week. I’m started taking my anti-nausea meds every day. I’m just dragging, and moving slower than I’d like. I keep noticing how tired I am. I’ve also discovered that blurry vision is my newest herx symptom. That explains why I was having such a problem finding the correct contact prescription! It felt like my eyes kept changing, and turns out they probably were. Greaaat. And the blurriness is just making me more dizzy, which makes me more nauseous. It’s just a cycle that I can’t seem to catch the end of.

Here’s hoping for a restful weekend!

 

Peace, molly

 

“Sometimes in our confusion, we see not the world as it is, but the world though eyes blurred by the mind.” ~ Unknown

“Time Flies”, Really? Are You Sure About That?!

Has it really only been a week? God, it feels like so much longer! Not only have we been struggling with our internet connectivity while we switch providers, but on top of that my computer completely crashed. It’s Murphy’s Law in action. I swear!

 

I still don’t know what happened to my computer, and I’m not sure that I want to. It’s working now. I’m just thankful for that! I do know however that it took my dad hours on the phone over the week with Dell as well as a weekend of reloading every piece of software I use on a daily basis on a connection not much faster than dial-up (read that as Extremely Time Consuming!!!) I think I finally loaded the last program this afternoon. But seriously, I always joke around with my dad that he couldn’t live a day without his computer…. yeah… somehow I don’t find that so funny anymore!

 

I had a few days there that I barely knew what do do with myself. I couldn’t check my email, talk on IM, listen to my music, go to school, or blog. Or the million other things I felt like I should be doing. It was so bizarre! I seriously did feel so unconnected with life. I wasn’t bored, just impatient. And yet, it was only a day or so that I had no computer. I fear I may have been overreacting. But, alas, my perception is biased now that I have it back and I’m blogging, listening to the new Fray CD (Which is awesome!! Thanks Em!), responding to emails, and checking my Facebook. Yep, that’s right guys I’m even multitasking. :)

 

It’s good to be back though. I missed blogging. I think it’s becoming somewhat of a release, as well as some guaranteed time for writing.

 

I was able to fill my time this weekend though. It encompassed a lot of Girl Scout planning. This camp we’re planning now is actually taking shape. I’m getting so excited! And some much-needed family time as well. It was so fun, Matt, Becky, Chris, and Tara were all able to come over for a late lunch Saturday. It was great to catch up with everyone. And, Tara was sweet enough to ask me to be her Bridesmaid this September. I’m so excited about that too! Now, I know that the time will absolutely fly by until then.

 

Yesterday was nice too. I spent the morning teaching preschool, and the afternoon painting for an art assignment. It’s been so long since I painted last, I really enjoyed it! And, surprisingly the painting didn’t turn out too bad. Last week I spent a day creating some more fused plastic bracelets, which turned out so cool! So I’ve been exercising quite a lot of creativity lately. Probably good for me, huh?

 

As far as a health update goes, I’m having a flair at the moment. I woke up this morning knowing that it would be a painful day. The rain is definitely not helping. But, I’m managing.

 

More tomorrow. If I remember I’ll post a few pictures of those bracelets :)

 

Peace, molly

 

“The only reason for time is so that everything doesn’t happen at once.” ~ Albert Einstein

Life Can Just Be Anti-Climatic

Yup, I admit it. I had a rollercoaster kind of day today. It started out frustrating, became just plain out fun, and ended on the bittersweet note of vertigo-to-be.

 

I walked down to my favorite local coffee shop with my mom this afternoon to meet up with one of the amazing people who agreed to meet with me to sign my forms for my scholarship today. It was so nice to be walking outside. The sun was shining, the snow was melting, and I was actually able to wear my coat unbuttoned! Woohoo! (I love spring… don’t say I never warned you…) I also really appreciate that today I was actually able to walk down there. Some days I simply can’t and I’ve learned to appreciate the ones I can.

 

After I got my forms signed, my mom and I realized we had over an hour to blow before the other form signer was due back at our house. Oh what to do? Well, go shopping at our favorite local shops of course! I made it into the craft store and bought a pattern for a wallet (we’ll see if I can make it out of fused plastic!!) and a beginner’s quilting kit made up of retro fabrics! I’m so excited about both of them! I also picked up a cute new sweater at the vintage clothes store. That’s my favorite type of shopping. No cars, no crowds, no insane shopping malls that are one of a dizzy gal’s worst nightmares; only the friendly small shops that are just a block away. What’s not to love?

So I was able to get the second form signed afterwards, and to celebrate I dug out my new sewing machine to make a few test quilt squares. A few hours (and many tense moments of frustration) later I was happily sewing away at my crooked squares made from my stash of recovered fabrics. And my defense to the crookedness? I say: “Dizzy people see the world differently. So deal with it.” Or, I’ll at least deal until I can finally pull off a straight one. But by that time I’m sure I’ll have moved onto bigger and better crooked and a skewed undertakings.

 

I was also able to receive the letter of reference I needed from my Girl Scout leader. She and Em worked on it last night and tonight, and sent it over. It’s so sweet you guys, thanks again for the amazing compliments! I’m speechless by it. It’s printed and ready to be sent off tomorrow as soon as I get a hold of my transcripts for the past 3 years. Yeah. I know. Easier said than done. Wish me luck, I have a feeling I’ll be needing it.

 

So, sounds like a great day right? It totally was! But, here’s the anticlimactic part. I’m ending the day after barely being able to eat anything all day. The nausea is kicking up, and it’s not pleasant. My mom made an awesome dinner of crab bisque and I could only manage a half a bowl. Sad, I know. I forgot to eat lunch and half-way through dinner I was blind sighted by a wave of nausea and dizziness so strong that I was positive the room was going to start spinning around me at any minute. I haven’t had vertigo in over a year, and I’d like to keep it that way.

 

So here I am, typing even though my hands, wrists, and arms are aching. I’m drinking hot water with lemon juice squeezed in it because it’s the only comforting nausea remedy that I know of. Listening to music that’s just loud enough to distract me from my headache, but not loud enough to make it worse. And avoiding turning out the light and going to sleep because I know that the minute I’m immersed in the darkness I’ll begin spinning, twisting and turning, and gripping the bars of my loft bed struggling to relax.

 

I think I’ll do some reading tonight. I’ve just begun a new book in the Mary Russell & Sherlock Holmes series written by Laurie R. King (which I’m addicted to by the way!). With any luck I’ll read myself tired, which wont be hard to do tonight. That I’ll admit too.

 

More later.

Peace, molly

 

“Never, never, never give up.” ~ Winston Churchill