New Year, New Antibiotics, New Goals

HAPPY 2014!!

It’s officially 2014. This year is going to rock! 2013 taught me a lot and I intend on using what I learned to make sure that this year is a great one. I’ve got a few updates for you all!

LLMD Appointment:

I saw my LLMD last week. He put me back on antibiotics! I’m really happy about this because my tinnitus, my headaches, and my hair loss are driving me nuts. These symptoms usually go away when I’m on antibiotics so I’m looking forward to this change.

I’m now on Rifampin and Bactrim. Funny thing about Rifampin. It turns my pee orangish red! Even though the pharmacist warned me about this, I was still shocked. Something I’ll just have to get used to, I guess. The warning label also mentions that it will permanently stain my contacts. I’ve been wearing my contacts every day and I haven’t experienced any staining yet. Let’s hope it stays that way! The Bactrim is okay so far. My main side effect is that I’ve been getting muscle soreness in my arms occasionally.

I’m just waiting for the herx. The past 3 times I’ve been on antibiotics, I’ve gotten a awful, awful herx about two weeks after I start taking them. I start school on Monday and I’m really hoping that I can somehow avoid the herx. Detox galore! I’m also loading up on my favorite probiotics, VSL, which I talk about here.

I am staying on my two herbals, AL Complex and MC BAR 1. I’m hitting this Bartonella from all sorts of angles. I’ve got this!

2014 Goals and Resolutions:

Okay, my 2014 resolution. I think it’s pretty great. Ready? Drumroll…. I’m going to buy myself flowers at least once a month! I know this seems like a simple thing, but I think it’s going to be good for me. In 2013, I had several moments where I was not kind to myself. I’ve realized that I need to spend more time treating myself to something. I do a lot of hard work and I should do something to thank myself! The flowers are a way for me to pause and realize that I am doing good things. So here’s to twelve whole months of beautiful flowers. Thank you to my cousin Heather over at SF Golden Girl  for the idea!

As for health and Lyme related 2014 goals, I would really like to get better at remembering to take all of my pills, powders, herbs, and drops. I have a pretty effectively organized pill box, but not all of my protocol fits in the box. I have to remember my AL Complex drops, my MC BAR 1 drops, my magnesium powder, my probiotic, and my boric acid suppository.  That’s a lot to remember! So I’ve decided to set a bunch of alarms on my phone to remind myself to take my various meds. How can I expect to make progress in my treatment if I’m still struggling to remember to take everything. This will be a challenge for me and I’m looking forward to improving.

What are YOUR resolutions?

Best,

Sofia

Dementors and Snow

This explains so much

This explains so much

Having a pair of Dementors inside me would explain so much, including why my week was so terrible. These dementors are sucking out all the happiness in me and replacing it with despair. For some reason, everything gets awful around and during my period. My stomach becomes super sensitive, I majorly herx, and I get horrible cramps. The last 3 times I went to the ER was during my period.

This month’s period has been no exception. My limbs have been hurting, my arm and leg muscles are sore, and my joints are upset. Luckily, there’s been no ER this time, but I’m still feeling awful. I’m also really thankful for my boyfriend, who is excellent at distracting me from my pain. This morning, we watched videos of adorable baby sloths. Cute baby animals help quite a bit.

But on top of the two dementors hanging out inside me this week, it has been really, really cold here. This morning it was -6° F. I have never experienced this type of cold and I can say with confidence that I don’t like it. At all. My body doesn’t respond well to the cold. If I go outside without gloves, my hands will hurt for the rest of the day. So the extreme cold hasn’t been doing me any favors.

I can’t deny how pretty the snow is though! It’s fluffy and beautiful. I just appreciate it more inside looking out rather than vice versa.

My snowy campus!

My snowy campus!

Thank goodness for heaters, blankets, and my herxing pills! Hopefully things will get warmer soon.

Best,

Sofia

P.S. How do you all like the new layout?

Mindfulness Meditation and Anxiety

One of my most troublesome symptoms is anxiety. It takes over my brain and makes me freak out about things I don’t need to freak out about. A lot of times, this anxiety escalates into panic and I end up having a panic attack. Not very fun.

When you have something as intrusive as chronic anxiety, it’s important to have coping mechanisms. One of these is mindfulness meditation.

What is mindfulness meditation? Well, let’s start with mindfulness. Generally speaking, mindfulness is a mental state achieved by focusing one’s awareness on the present moment while calmly acknowledging one’s thoughts and bodily sensations. So, what does this have to do with meditation? Just about everything, actually. Jon Kabat-Zinn, pioneer of using mindful meditation for stress reduction, puts it very well.

“Practice moment to moment non-judgemental awareness.”

When we meditate, our goal is to achieve a calm and focused mind. When we add mindfulness to this mix, we are trying to have a calm mind while simultaneously being aware of our thoughts and bodily sensations.

Mindfulness mediation has lengthy list of benefits, ranging from higher brain function to less stress. I understand this sounds far-fetched, but seriously, mindfulness works.

Today, I had some spare time in between my classes. I found a secluded spot in the student union on campus and had a nice, short meditation session.

Me prepping for my meditation sesh in a secluded part of camus

Prepping for my meditation sesh in a secluded part of campus

Whenever I meditate I use the same routine. Firstly, I open this very useful app on my phone called Meditation Timer. It keeps track of how long I’ve been meditating and makes an inviting gong noise when I want to finish my meditation.

I divide my practice into three 3 minute parts, making for a total of 9 minutes of meditation. It goes like this:

  • Minutes 1-3: Meditating on the breath. During this first part, I am mindful of my breath. I focus on breathing in and out, as I normally would. If my mind wanders, I gently bring my attention back to the breath.
  • Minutes 4-6: Meditating on sounds. Now, I shift my attention from my breath to the sounds I hear around me. This an be anything from the heater vent buzzing, to the sounds of the cars passing by. I find this particularly enlightening because suddenly I realize just how loud the world is. It makes for great mindfulness.
  • Minutes 7-9: Meditating on touch and sensation. During the last part of my meditation practice, I focus on touch. The weight of my clothes on my body, the feeling of my body on the ground, the sensation of my eyelids touching one another. Once again, if my mind starts to wander, or I become distracted, I gently bring my attention back to touch.

By the end of my practice, I feel refreshed and ready to face the world once again. I do this often if I have to stay up late finishing homework and my brain starts to become lethargic. Just nine minutes of focus and I’m ready to go!

The view from where I did my meditation. A surprisingly nice day in Eugene!

The view from where I did my meditation. A surprisingly nice day in Eugene!

Best,

Sofia

 

Quick Update: 2AM and not feeling great

This past week has been a rollercoaster of good days and bad days. The first part of the week, I got a raging headache everyday- always in the afternoon. My temples felt like they were going to burst. Sensitivity to light and sound did not help either. The only thing that makes these headaches go away is sleep. Every time I decided to sleep it off, I wouldn’t wake up for hours, sometimes even the next day. That happened 3 times this week.

Weirdly, Thursday and Friday I didn’t get headaches at all! Amazing! Yet, as soon as I thought they were over and done with, they reappeared Saturday and again on Sunday. What’s the deal?!

Also, my hair has been falling out. I’m finding my hair EVERYWHERE- all over my house. My guess is that it’s from stopping antibiotics, which I’ve been off of for almost a month. Last summer when I took a break from antibiotics, this same thing happened. I’m determined not to let it get the best of me though! I’m going to try taking Biotin tablets, which has had some successful results with other Lymies. One more pill to add to the ever-growing list!

Lastly, joint pain again. As always, it’s worst in my hands. The pain makes doing just about anything difficult. I’ve never noticed how much I rely on my hands until it hurts to use them!

This is what I do when I have joint pain in my hands. Lay down and watch Netflix.

This is what about 60% of my life looks life. Bed+ blanket+ Netflix. Currently enjoying Star Trek. 

This is what I do pretty much every time I feel bad. Pop on Netflix and try and relax a bit. Netflix is great. Once you pick out a show to watch, you can sit there for like 3 hours and never have to use your hands! After one episode ends, it automatically cues the next one for you! Perfect for joint pain! And insomnia, too.

I’m pretty sure this is all happening because I’m herxing off of my new herbal, MC-BAR-1. The drops are tasteless and tiny; I guess I underestimate how much they’ll affect me.

Like every herx, this will soon pass. In the mean time, more blankets and tv! Yay!

Best,

Sofia

Pill Mountain

Welcome to Sofia’s Pharmacy!

Every once in a while, I like to document how many pills I’ve taken since the start of my health problems. In 2011, before I was even diagnosed, I started keeping all my empty pill bottles. Every time I fill up my weekly pill box, I seem to run out of something I take. That empty bottle goes into a box I keep in my room. This is the result of that box, all neatly organized.

A visual representation of my treatment thus far. These are all the pills I've taken from late 2011-June 2013.

A visual representation of my treatment thus far. These are all the pills I’ve taken from late 2011-June 2013. I couldn’t even get all of them in the picture! 

This is my mini pharmacy. I’ve got everything from empty Penicillin syringes to half-finished oral antibiotics to homeopathic remedies. Basically, if I took it or used it for a health-related reason, it’s here. Some bottles are empty and some are half full.

Here’s a quick scan of everything that’s in this picture, starting from the very back and working my way forward.

  • Lyme Literature
  • Herx and anxiety supplements
  • Pain killer, oral antibiotics and anti-fungal prescriptions
  • Symptom management supplements
  • Vitamins
  • Probiotics and detoxing supplements
  • Rare symptom management supplements, including topical creams
  • Liquid and granulated Stevia
  • Herbal liquid antibiotics
  • Bicillin L-A syringes
  • Pill organizer, eye droppers, liquid medicine measuring cups, and pill cutter

Yep, that’s my collection. Actually, that’s not even all of them. I took this picture in June and my collection has definitely grown since then.

You know, I really wouldn’t have nearly as many pills as I do if I was just tested for Lyme in the very beginning when my symptoms started. But that’s a rant for another day.

I’m planning on creating some sort of art project out of all of them after I’m done with treatment. I’m thinking a giant tick would be interesting. That’s one positive reason to keep my collection growing!

Gotta keep climbing this pill mountain.

Best,

Sofia