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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

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I took things literally.

Paintin' May Green!

What are YOU doing to “Paint May Green” for Lyme Disease Awareness Month? Every little thing counts, no matter how little.

More from me soon. I’m in the final week of high school, my friends. The assignments are piling up and summer awaits. My graduation is in just over a week – I’m speechless. Honestly. I’m in shock that I’ve even made it to this point. Now my only job is to buckle down, finish up my stacks of work, and soak up the sun. One thing at a time, however.

Keep me in your thoughts as I push myself this week! And, spread a little awareness wherever you go. Get the word out. Need info? Check out Lymenaide’s amazing website.

I’ve been working on this post for so long that I barely remember what it all was that I wanted to say. In fact, this post has been so long in the works that apparently I’ve got another appointment with my LLMD next week. That works out wonderfully since I’ve forgotten my last one! (Surprise, surprise.)

I do remember that last month I walked into the office in the midst of my abdominal troubles. Near constant pain, swelling, and complete loss of appetite. My doctor had me get an ultrasound for a suspected enlarged spleen. That ultrasound came back within normal limits. But I was still left with the pain, not to mention the swelling. There really wasn’t much we could do. I wrote about this extensively here.

I also had a blood draw that day to check on my liver panel. Being on the Mepron was worrying with the toxicity, and now those new symptoms. Last week I came home from the Senate hearing and found a message from my LLMD waiting for me. My liver panel numbers were significantly higher than my December results had been. At my January appointment we had decided to wait and see what another month on the Mepron would produce. My Babesia symptoms had flared, and not broken yet.

Instead, with these new liver panel numbers I was instructed to stop the Mepron until we could discuss the situation with my doctor in depth. So, I was on the yellow stuff one morning, and off that night. Just like that!

I think it shocked my system, frankly. Last week was one long herx. I barely made my school deadlines, and by the end of the week I had a migraine like I hadn’t had in months. I can only describe it as a headache so intense that it reminded me of the ICP episode of last year. I had a constant low-grade temperature, and an increase in brain fog.

But by Sunday morning I was feeling well enough to follow-through with my plans to volunteer at my old elementary school’s Mardi Gras, and then spend the afternoon with friends. It was a joy! And, I couldn’t believe my luck when I felt well enough the next day to spend another afternoon with friends! Things were looking up. The herx had lifted. Lifted, that is, all except for one symptom. I’ve still got the headache I got the day after I stopped the Mepron. It’s no longer a migraine, but it’s a headache. And it isn’t letting up.

As far as I can tell I’m still showing symptoms of Babesia. But, I’m waiting to hear my LLMD’s opinion next week.

I feel differently since stopping the Mepron, however. I don’t know how to describe it. A word isn’t coming to mind. I think my energy levels are a little higher, and my stomach has felt better since last week. My concentration level and cognitive functions are fleeting though.

Yesterday I couldn’t settle down to work on homework. Something just wouldn’t let me concentrate on what was in front of me. Instead I found myself making bread. Gluten-free bread. From scratch! I don’t even remember starting – I just recall being in the thick of measuring flours and smelling yeast. I made a big pot of quick lentil soup for dinner (I’ve been craving lentils like crazy!), and threw together a chocolate pudding to set overnight. I was a madwoman in the kitchen and I could barely stand by 7 o’clock.

I do feel that I’m not getting enough probiotics in my routine. And, adding more can only help my abdominal issues. I do take a supplemental probiotic, but I want to be adding additional foods to that. So – deep breath – starting this week I’m going to begin brewing kombucha (fermented tea) and give that a shot. I’m also very interested in water kefir as a dairy-free kefir option.

I had the opportunity to spend the afternoon today at the MN hearing for the house version of the Lyme protection bill, HF 2597. No vote yet. The bill was tabled.

More soon. I feel sleep coming, and not a moment too soon.

Peace and healing, molly

 

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” – Lee Iacocca

, originally uploaded by Jessie Koon.

 

This popped up in my Twitter feed today from Kind Over Matter. All I can say, is that I honestly and absolutely believe that things happen for a reason. One thing happens that causes something else, and before you know it there’s a chain reaction leading to an exact moment in your life. Most of the time these undercurrents go unnoticed in our lives. I love to stop and notice those movements in life, and enjoy the pure the serendipity involved.

This photo is exactly what I needed to see this morning.

I woke up feeling miserable. I was moving slowly, stiffly, nauseously. I couldn’t eat a bite. I could barely stand long enough to get dressed, never mind the make-up. Vertigo swished and swirled around me as I tried to bend down. It was as bad as I’ve been in a long, long time.

And this had been building up all week. Each day worse than the day before it. And this morning I almost cried. Today was the day that I had been asked by my school to tape a PR video testimonial interview. I was so excited to do this. I believe in my school, and it’s mission. This was a chance I jumped at. And I woke up in worse shape than I had imagined.

That’s when I saw this photo. I smiled. And I knew that this was meant for me to see this morning. It brought out that motivation I needed, that knowledge that I could do this. I wanted to do it, and I wanted to do all I could to help myself achieve this. 

I pushed myself to swallow my handful of pills and go to my craniosacral appointment. I’m so incredibly grateful for my therapist there. She is amazing -inspiring and motivating me to focus myself for this opportunity, and then focusing herself on my body.

She worked a miracle today.

I just got home from the interview, and it was the most fun I’ve had in a while. And, remember, I’m one of those people who usually have fun doing anything! This was incredible. I’m so grateful, and sincerely happy to have gotten the chance to do this! It was great, and I was great! I pulled something out of myself, and I hope that what I brought to this process today will help someone. I  know it was worth it if it does.

I had to share this with you!

Peace and healing, molly

Hello, all! You have been such a wonderful support system over the course of the year. So I, of course, find myself turning to you with a request.

I’ve recently begun another blog. This time it’s for school. It’s called Peaced Together and is exploring the overall topic of peace in our lives.

Can you help me? I’m looking for some comments sharing your opinion of what peace is. We all have a different perspective, opinion, and definition peace. I’m gathering them for my project. I’ve created an intro to peace video to get your thoughts churning. You can find the link to it here – http://wp.me/pFToy-M.

Please, take a few minutes and explore my site. I’m having so much fun creating it. Peace is a passion of mine, and I know that this is fuel in my life for the healing I need.

IP 10-28

I took this photo yesterday at the doctor’s office. {You can find it when you’re exploring Peaced Together by finding the category Peaced Together with a Button.} It spoke to me! Hope you enjoy it as much as I did. The receptionist is used to my my quirkiness – she was only slightly confused as to what it was I was doing!

Thank you so very much.

Peace and healing, molly

… aka the post that’s been building up in my mind for over a week. This blog means so much to me. It really does. It’s my outlet, my face to the world. I’ve struggled lately because as much as I love writing here, I feel as if it’s physically simply too much half of the time.

And here comes my venting session – Why does this, something I love, have to be getting harder as I’m supposed to be getting better? Why? Don’t misunderstand me. I do know why. I know that I’m still getting better; I’m just treating the harder to reach “bugs”. Each and every day I’m getting better. But I don’t want this disease to take anything more from me than it already has before I can get it into remission. Nothing more.

I’m scared that it will. New symptoms are appearing, and old ones are rearing their ugly heads yet again.

Writing didn’t used to be this hard. I mean, writer’s block is one thing but this is on another playing field altogether. Brain fog is intense, and it’s frustrating as hell. I know that I can pass my physics class. And yet, one day I get an F on a quiz. Great. I talk to the teacher, get some advice, and go take the quiz again. The exact same quiz. I got 100% on it. The only difference was the days I took it on, and the amount of actual mental clarity I had at the time. And I obviously didn’t actually remember any of the questions or their answers!

When I sit down to write a blog post I have to ask myself if what I want to say is worth it at the moment. Can that energy be used towards something else? Usually, the answer is yes. And that is so deeply saddening to me. Often, however I’m swayed by how I’m feeling. This is natural, of course. But when the disease I’m blogging about is stopping me from actually blogging, then that’s a problem. I don’t like this reality. I don’t want to accept it. I want to find a way around it because I want to be able to blog about whatever pops into my mind with no fear.

My joints ache so much now that typing is an issue, and writing by hand is only possible for short pockets of time. On the topic of joints, walking is an issue. My knees are locking almost every time I get up, or walk. I’m 17 and I feel as if I were 90. My memory is, at times, disturbing. A month or so ago I began to get sores on one of my fingers. Then the finger blistered. After a few days of wondering what had happened, I realized that I must have burned myself. But I have absolutely no recollection of doing that! About the same time, I was reading in bed and buckled in pain when I tucked my legs up. I threw off the blanket, only to see a bruise the size of a golf ball on my leg. By the next morning it was a nasty, black and blue tennis ball. Again, I have no memory of doing anything to my leg.

My mom has actually expressed concerns over my cooking alone. At first, I was angry. Shocked. Disbelieving. Then I slowly remembered how it must feel to watch this happening to someone you love. I’m still shocked, but I’m being careful in the kitchen. If I can’t chop something I don’t do it. If I can’t open something, I ask for help. If I’m shaking too much to get the bread out of the oven I ask someone else to do it. I can’t control when I’m going to forget about a pot on the stove, however. But, cooking is another outlet of mine. And I can’t give it up. That too is something I want to find a way to make work.

The other night my mom and I were watching So You Think You Can Dance. I love this show. It’s always slightly emotional for me, because I was a dancer for years (ballet, tap, and jazz). Seeing the dancing makes me itch to twirl across the room, or have the opportunity to express the very essence of a piece of music. Dance is so touching, and so powerful. It truly opens a person’s soul. But, the other night instead of being moved by the dance I was stunned by the dancers themselves.

After a week of grueling practices and performances before the judges, the girls decided to go swimming on their afternoon off. They were all smiles, jumping into the pool and laughing. They showed no ill effects. If didn’t already know it I never would have guessed what they had just been doing for hours on end. I can’t imagine not sleeping in that situation. I was so puzzled that I paused the show (I LOVE my DVR) and asked my mom, “So… normal people can do that?!?!?!”. Apparently they can. I would kill to have energy like that. I’ve decided that I want to be able to do that. I want to live like that.

I know that I may never have that life. I can barely imagine having that life. But, I also know that without a dream in mind, my motivation won’t be nearly as purposeful. I’m a dream-fueled person. I run off the fumes of inspiration and dreams. And I won’t let this disease take those away from me.

And, here concludes my venting session for the morning! Thank you, so much, for your support. It means the world to me. Look out for my next post – I have some great news, and some new treatment updates to share!

Peace and healing, molly

 

“Dreams are like the paints of a great artist. Your dreams are your paints, the world is your canvas. Believing, is the brush that converts your dreams into a masterpiece of reality.”

Just a quick post before I fall up into my bed. {I say “up into” because I have a loft bed, and try as I have, it’s impossible to just fall into it. Frustrating, yes, but I deal because I love it.} I almost forgot over the weekend, but I have an appointment with my LLMD bright and early tomorrow morning. You’re all in-the-loop again. How’s it feel? I’m enjoying it! 

I just finished writing up my most recent symptoms, and questions to talk about tomorrow. I think we’ll be discussing my co-infection panel results this time. We only had the preliminary results last month, and my LLMD wanted to refer with another doctor in-state about my results.

I’m a little frustrated because I’m seeing a pattern in my symptoms and some of those that I thought were gone for good, seem to be back. I’ve had 3 migraines in the past month. Those have been gone for months! We thought that they were being caused by the gluten in my diet because almost as soon as I went gluten-free they began to decrease. Why are they back?

And, true to my yearly patterns my winter air hunger is back with a vengeance. Yuck. My pulse has been so fast that some nights it’s hard to fall asleep. And my hands are so sore that I can barely write a lesson’s worth of math notes. My teachers are so understanding, but you try explaining brain fog to them. It’s hard! Especially when you’re experiencing said brain fog at the time!

Of course, this pain and soreness can be partially blamed on the weather. Did you know, that it has SNOWED here in Minneapolis? Yes. Inches of snow on October 12th. I don’t remember it being this cold and white this early! {But then, I try not to rely on my memory…} This feels truly bizarre. I love snow as much as anyone, but what happened to fall? Just wondering, since last week I announced that it was “officially here”.

 

Wish me luck tomorrow!

Peace and healing, molly

 

“Kindness is like snow – it beautifies everything it covers”

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