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I’m off to the Capital!
Tomorrow afternoon is the senate hearing for the Minnesota Lyme bill, otherwise known as S.F. 1631. The bill is striving to protect the rights of both doctors and patients in the treatment of Lyme Disease.
I’m very curious about this process. It should be pretty interesting, if not madly overwhelming.
Wish us good luck!
More details can be found here and here.
I’ll post a follow-up as soon as I can!
(2-9-10) UPDATE: The hearing yesterday went about as well as I could have expected! It was a long, drawn out few hours filled with both Doctor and patient testimonies. We certainly packed the house, that’s for sure! It was surreal to see so many other people there who were affected by Lyme; but it was a reassuring feeling as we got down to business.
Long story short – The bill was approved after a 5 to 3 vote on the senate committee level, and will now be passed onto the senate floor!
Oh, sweet victory!
We’ll take them as they come, and hold our breath as we wait for the legislative process to continue. I’m so happy that I was able to attend the hearing, and see this process with my own eyes. Parts were emotional, irritating, nerve-wracking, and overall hilarious. But in the end it was worth it.
This article has been floating around my Lyme circles today on Facebook and Twitter. Check it out!
Legislators hear testimony about treatment of Lyme disease
“May good luck be your friend in whatever you do and may trouble be always a stranger to you.” – Irish blessing
I’ve given up on the idea of predictability. It’s a myth, a scam, a relentless tease. At least, it is when you’re living life with Lyme. I’m not trying for the “half glass empty” approach, or the storm cloud affect. No I promise I’m not. I’m as hopeful as ever. I’m simply accepting reality.
I’ve known this for a long time. If this disease had an owner’s manual it would be remiss to omit it. But sometimes Lyme can just punch you in the stomach. Literally.
My last post was a celebratory one about the tilt table test results. At the time, I said this:
I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!
Let’s see… that was on Friday the 22nd. A week later (last Friday) I was back at the hospital again. But this time I was getting an abdominal ultrasound.
The pain, and swelling, increased each day until my appointment with my LLMD on Wednesday. By that time the pain was literally in my entire abdomen. But it had localized with the most severe pains coming from underneath my ribcage on my left side. Yep, my spleen. Great!
I was measuring the swelling. At one point it was almost 3 inches more than my normal measurement. 3 inches! It stayed pretty steady around an increase of 2 inches for the week, however. The pain was dull, shooting, stabbing, burning – you name it. Sometimes I couldn’t even sit up straight.
My LLMD felt around (painfully!) and was worried since she could feel the tip of the spleen sticking out from the ribcage. I should mention that she had checked in early December and didn’t feel a thing. So, off I went for a blood draw and an ultrasound appointment.
It wasn’t too bad. The swelling had (of course) gone down since Wednesday by Friday. But the lady was so nice, and so quick about it. My mom and I grabbed a cup of tea at the coffee shop on the way out, and were home just as the sun had fully risen. Why it had to be that early I have no idea. I’m a person who doesn’t function until noon on a good day!
Anyway, it was Friday so we put a few calls into the office to make sure my Doctor got the results before the weekend, and surprisingly enough she called back with results in a few hours.
Normal. Let me say that again, louder: NORMAL.
When my mom told me I think my reaction was, “WHAT?!”
Something was, and is, seriously wrong here! How can everything look normal?! Ah. That is one of the great Lyme mysteries. We all ponder it, turn it over in our minds, and eventually fume about it.
My LLMD believes that my entire abdomen is enflamed and irritated from organs to intestines. My are nerves sending out haywire responses and my body doesn’t know what to do with them. Funny, neither do I.
So, I’m still in pain. It still hurts to touch my abdomen, and doing so causes a wave of nausea. The pain hasn’t let up since last week. I’ve lost my appetite almost completely. And, I’ve given up tracking the swollen ups and downs.
I’ve accepted that this is a phase in my treatment. Granted, an unexpected one and yes, unpredictable. But I’m not happy about it. Herx or med reaction, I don’t know. I only know that I haven’t lost all hope that it’ll be better when I wake up in the morning.
Much Lymie <3, molly
“It’s something unpredictable, but in the end is right.” ~ Green Day
An update from what transpired during the rest of my LLMD appointment will be coming this week. Mepron, oh Mepron!
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”
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
My Lyme disease adventure has recently thrown another curveball at me. A few months ago I began cutting many sources of Gluten and processed sugars from my diet. I didn’t notice a huge difference at first, and didn’t think much about it. It was hard to decide to make the switch, so I told myself that I could always cheat a little. Some regular pasta once in a while, or maybe a sandwich on French bread for a treat. After all, I didn’t have a gluten-intolerance like my mom. No, I was just avoiding these foods to curb the yeast build-up from long term antibiotics.
My mom has been wheat-free {not completely gluten-free} for a few years now. So it really was pretty easy for me to switch to her diet. She had scoped out some great brands, and made the transition nearly seamless for me. Sure, I craved things. I still do. But, I have so many new replacements available to me that I’ve for the most part been great about accepting my new lifestyle. I really only cheated twice.
And, I’m sorry to admit how much I regret those two choices. The first time I decided to have some pizza with friends. We were at one of our favorite hang outs, and they really do make some of the best pizza I’ve ever had. Fast forward and that night I was up for hours with the oddest stomachache I’ve ever had. It didn’t hurt. But I could practically feel my body trying to digest the wheat. Foreign object! I had been off wheat for about a month prior to that.
A few weeks later I bit the bullet and ordered a hamburger while out for dinner when my aunt and uncle were in town. There wasn’t much on the menu that was Gluten-free, and that hamburger was calling my name. Unfortunately I listened. I was awake for three hours that night, in and out of the bathroom and in complete misery the entire time.
Needless to say I’ve been pretty diligent about keeping myself on my “diet” since then. It’s been hard, but I think it is helping me. I’m eating healthier {And I ate considerably healthy before}, and have more energy. I don’t know if I should attribute the energy to this change, but I know it’s made some impact. Not to mention I’ve been losing weight regularly each week.
I related this all to my doctor at my last appointment. She looked at me, and I knew it was coming. She believes, as do I, that I’m now suffering from Gluten-intolerance. She warned me that I may have this follow me for the rest of my life. Something to look forward to, huh? But, interesting enough she also mentioned the fact that a colleague of hers has been looking into the relationship between Gluten and Lyme. Apparently they’ve seen many similarities between the two in the body and have developed a theory. In it, the idea is that the body is so focused on killing and eliminating the Lyme in the body that it recognizes the similarities in the Gluten and attacks it as well. I find that fascinating! I’m interested in learning more about this concept as time goes on. It sure would explain not only my intolerance, but my mom’s as well.
Peace, love, and healing, molly
“Surprise is the greatest gift which life can grant us.” ~ Boris Pasternak
Yep, that’s pretty much what it feels like these days. I just finished the saliva spit test I was talking about a few weeks ago. My doctor ordered it to test my adrenal glands. She suspects that they might be the cause to some of my all-too-often draining fatigue of late. So we’ll see. I was all set to take the test last week, but then we discovered that I had to be off one of my meds to do it. So, like I said we stopped those and today was the day. I’d been avoiding it all weekend. I couldn’t eat chocolate, onions, or garlic {all of which I of course craved today. It would be the day my dad suggested we have spaghetti for dinner and the day after I made gluten-free vegan brownies. Ughh.} And I couldn’t drink caffeine. For those of you that know me, you’ll agree that that one was a major biggie! I’m a tea drinker, and had to stick to only herbals all afternoon/evening. For the test, I had to collect samples at 4 specific times during the day. So I’m over here mentally throwing myself a party for remembering them ALL and my normal meds to boot. So, not a horrible day but not the most fun. {I hate getting up early. Oh, and gagging too. I hate gagging. But let’s not get into that!}
Otherwise it’s been another crazy, hectic few days since I wrote last. I spent all of last week cramming to finish up my Algebra II and Chemistry classes by Sunday night. I wasn’t able to keep up in the semester-long class so I was given an extension. And then when I realized I was too sick to finish by the end of my extension I was granted permission to complete a quarter credit’s worth of work instead of the full semester. That was a God-send! So it did take me many frustration-filled hours last week. But I finished! I’m so proud of myself. I brought my grade up from an F to an A during that week. My symptoms have really flared up since beginning treatment {of course} and school has been a struggle. For the most part I’m on track, but will be finishing up the other quarter’s worth of work in summer classes to make sure I’m ready for next fall.
This weekend was fun though! After the long week it was wonderful to just chill out and relax when my aunt and uncle came into town for a visit. We went out to dinner Saturday night and had them over for a Mother’s Day barbeque last night. Yesterday during the afternoon my parents and I made it to a special event at the Peace Garden which was so beautiful! I brought my camera along and had a lovely time playing with it and taking some photos.
Then today I started my school day early and completed as much work as I possibly could for the week. Why, you might be asking? Because tomorrow I’m having another spinal tap. Another LP. And then another few days of flat bed-rest afterwards praying I don’t get another spinal headache just in time for my big brother’s college graduation next weekend. I’m not too worried about getting another one. At least this time I know what to expect, and more importantly I know that I’ve gotten through it before without a problem. The more annoying aspect of the procedure is that I have a scheduled 6 hours of bed-rest at the clinic afterwards. So I’ll literally be there until they close. Oh lucky me. So think of me tomorrow morning and wish me a speedy recovery, if you will. 
Thanks so much!
And I hope you enjoy the photos I took at the Peace Garden.
Peace and healing, molly
“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.”
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
I'm in the Lyme-Light 
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