9 Must-Have Apps for a Chronic Illness

webstersofia:

Thanks so much to @Lymediseasewarrior for posting this awesome list of apps that are great for chronic illness! DEFINITELY DOWNLOADING THEM.

Originally posted on LymeLight:

A chronic illness is never easy to manage, but with today’s modern technology, we have a little help.  Below I have listed several apps that I have used and found useful.  Look through the list and see if there’s something here that could make your life easier; and if you don’t see one that should be on the list, comment or email me and I’ll try it out.  :)

1. Water Your Body

water your body

I loved this app.  It has a simple interface, you select the container size you normally drink water from then just tap on the icon every time you drink water.  When you start, it asks for your weight and gives you an exact amount of water you should be drinking every day based on your size.  If you aren’t drinking enough, it will send you little reminders that pop up on your phone telling you to drink…

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Brain Fooooooooooog

You know what sucks? Brain fog. Brain fog sucks. It’s part of the reason why it’s been so long since I’ve posted something. I keep forgetting. My memory is completely unreliable and I can no longer trust my own brain.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastel, and candle wax on stretched canvas. 2014.

I was thinking to myself earlier today, “I wish that I could show people what the heck this is like. It’s such an odd feeling and it’s difficult to explain. How do I depict brainfog?”

I drew a self-portrait with oil pastels, then poured candle wax onto my face. Candle wax is actually a pretty accurate representation of what brainfog is like. It’s this sticky, annoying semi-opaque thing that gets in my way all the time. The art project was actually pretty difficult to do because I currently can’t find any of my wooden pencils or my eraser. It’s hard to do art when you’re incapable of erasing anything. Also, please excuse my shitty art skills, I created it while having brainfog. And I have brain fog as I’m typing this now.

I’m still me, I just have bits of wax stuck in my brain that make it hard for me to do things.

One of the worst parts about this is that I don’t even realize its happening. Only about 12 hours ago did I realize that my brain fog returned about a month ago. It’s all starting to make sense now.

The last four weeks have been a clusterfuck of forgetfulness. I’ve lost like 8 things and keep forgetting to do really important stuff.

About six weeks ago, I bought really expensive tickets to see my favorite band of all time, Modest Mouse. I literally bought the last two tickets to a completely sold out show. I LOST THE TICKETS. I tore through my entire apartment, dug through my trash, had a panic attack, called my parents and made them tear through their house, all for naught. I literally cannot find them. I called the ticket company and asked if I could get them reprinted, to which they said no to. Apparently the tickets are impossible to reproduce. Guess what happened? I MISSED THE SHOW. I never found my tickets and I missed seeing the best band of all time. The show was a week ago and I still cannot find those damn tickets. Thanks, brain fog.

Last week, I realized at 3:30pm that I had an 7 page paper due at 5:00pm that I had not even begun to look at. I had completely forgot about this assignment and didn’t even remember until 3:30pm. Luckily, I was able to beg my professor for an extension and he gave me another week to work on it. But still, I’m forgetting about papers. This isn’t good.

I also lost the key to an important door at school/work. To check out the key, I had to give the worker my ID card. So until I find this key, I don’t have access to my ID card. And I can’t get into the door.

I keep forgetting to respond to important text messages and emails as well. I’ll read them, say to myself, “That’s important. I’ll respond to it later so that I can spend time on what I’m going to say.” Then never respond. To everybody who has been trying to contact me this month and haven’t gotten a reply, I’m sorry. Blame it on the brai-ai-ai-ai-ain fog.

I even had to write a note to myself to make this blog post. There’s currently a sticky note on my laptop that reads “Blog Post Idea: Struggling with Brain Fog. I keep losing my shit. Maybe paint something to go along with that.”

 

In the mean time, lots of detoxing!!!!! Detooooooooooooox.

Best,
Sofia <3

 

I don’t know how you do it.

“I don’t know how you do it.”

I get this phrase from people all the time. And honestly, I don’t really like it.

I start to explain my life to people, how I’m working three “jobs” dedicated to social justice, managing 12-16 credits of school, working my way through my Lyme treatment protocol, and navigating through so much oppression from the medical industrial complex and widespread ableism. When I talk about these things, often times, people tend to, well, sort of freak out.

Photo on 2-19-14 at 3.29 AM

The people who say this to me cannot fathom the life I’m living. They cannot fathom why I’m doing all of the things I do, or the drive I have. They don’t because they haven’t, and may never have to, experience the trauma that I’ve felt. Furthermore, in their attempt at solidarity and acknowledgement of my struggle, these individuals actually alienate me even more.”I don’t know how you do it” makes me feel like a strange creature, a space that is unable to relate to my peers.

But really, I’m no different from you. I also procrastinate. I also binge on Netflix. I also have the problems you have. The only difference is that my experience with problems I face transcended into something bigger and has given me the drive to do something about it.

So don’t tell me that you don’t know how I do it,
Because honestly, I don’t know how I do it either.

Access Intimacy: The Missing Link

webstersofia:

Mia Mingus, queer physically disabled woman of color adoptee, talks about Access Intimacy in this brilliant blog post. I have only had access intimacy once or twice in my life. It’s such a special experience that I can’t let it go.
Have any of you ever experienced access intimacy? What was/is your experience with it?

Best,
Sofia

Originally posted on Leaving Evidence:

abstract painting with yellow, purple, pink and red spots.There are many ways to describe intimacy.  For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy.  But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it.  This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape.  I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability.  I think Access, as a framework, is powerful for so many of our lives.  Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy…

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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

New Wheelchair!

New Wheelchair!

On Saturday, I got a new wheelchair! It’s a Quickie GT rigid frame ultralight wheelchair with solid wheels. And it’s Lyme green! I LOVE IT.
For the past four years, I’ve been using this crappy Invacare home wheelchair I bought off Craigslist for $50. I’ve used it so much, it’s falling apart. If I go down a slope, the whole chair shudders and almost throws me out. It was time for a change.
I first decided to get a new chair in June. So for six months, I fought and fought through the bureaucracy and misinformation that is my insurance company. Every time I spoke to somebody on how to get this paid for, they told me something different. Nobody knew what they were talking about. Finally, after about 3,849 fights with the insurance company and incompetent medical supply stores, I decided to circumvent that whole process and buy a wheelchair privately.
I scoured and scoured eBay and Craigslist to find one that would be an upgrade from the Invacare I was dealing with. I finally found one that was exactly what I wanted. Even though the seller was difficult, I finally got this baby.
I’m so so so happy with this wheelchair! It’s so light that I can lift it by myself without straining any of my muscles. Today I went Christmas shopping in it and I never got thrown out! It’s amazing. So easy to use!
This wheelchair will make my life so much easier. I’m often limited to the things I can do because of the clunkiness of my chair. This changes everything! I’m excited. :)

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?

Lyme, AIDS, and The Dallas Buyers Club

Yesterday, I saw the movie The Dallas Buyers Club. It’s about a rodeo man in Texas in the 1980s and his battle with finding effective treatment for his AIDS. After nearly dying from taking AZT, Ron decides to go to Mexico to pursue alternative treatments. He brings back a huge stockpile and starts selling them to HIV/AIDS patients all over Dallas and creates the Dallas Buyers Club. The FDA, doctors, hospitals, pharmaceutical companies, and even the IRS fight him at every turn.  The doctors that go against the grain are fired and get their licenses revoked. In the movie, according to the FDA, the government decides how people are treated for diseases, not Ron and other AIDS patients. His lack of agency fuels his battle even more.

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Sound familiar? As I was sitting in the theater watching the movie, I just wanted to jump right into the movie and give Ron a hug. I, and so many Lyme patients, know exactly what he was going through. The government treats Lyme today like they treated AIDS in the 1980s.  There is confusion on how it is contracted, there are disagreements on how to treat it, and it is widely misunderstood- all while people are dying in the crossfire. Since the IDSA/CDC mandated guidelines are completely ineffective, patients are forced to look elsewhere for treatment.

AIDS treatment has improved drastically since the 1980s. This gives me hope that in 20 or 30 years, Lyme will be just as widely recognized. The government will have to look back and say “That was a mistake. That was bad.”

In the meantime, we have to be like Ron. Keep fighting for our basic right to have a opportunity at being healthy.

Best,

Sofia

P.S. Check out this article about Lyme that appeared in my school newspaper! You might just see a familiar name. :)

My Top 6 Favorite Gluten Free Snacks

I am a snacking fiend. I love having something to munch on while I have down time. Unfortunately, being gluten free (and mostly sugar free) seriously limits my snacking possibilities. Luckily, after being gluten free and sugar free for quite some time, I’ve found a few tasty things that are on my diet AND are delicious.

Here is a list of my favorite snacks!

6. Luna & Larry’s Coconut Bliss Ice Cream

Coconut Bliss ice cream bar! Chocolate flavored!

Coconut Bliss ice cream bar! Chocolate flavored!

This stuff is awesome. Since I became sugar free, I kissed the possibility of having ice cream goodbye. Not only is this delicious product is sugar free, it uses agave nectar as a sweetener! No artificial sweeteners or chemicals in here! It’s totally gluten free as well. AND I have good news for you vegan folks. You can eat this!

It has a soft, creamy texture and has bits of coconut in each bar. It melts quickly, but tastes delicious. I definitely recommend it! Fun fact: The company is based right here in Eugene. Very cool!

5. Bumble Bee Sesame Bars

Hazelnut flavored bumble bar. Yummy!

Hazelnut flavored Bumble bar. Yummy!

Its tasty flavor and interesting texture is what sets Bumble Bars apart from other gluten free snack bars. Made almost completely out of sesame seeds, these things are really really yummy! They have a whopping fourteen different flavors ranging from cherry chocolate to hazelnut.

It only has 7 grams of sugar in each one. While that number could be lower, it is fairly decent for a snack bar. Most snack bars range from 15-30 grams in each bar. This makes a great occasional treat that tastes amazing.

The actual bar

This is what the actual bar looks like. Interesting, isn’t it?

4. Nuts

Yes, I know it sounds pretty simple. But nuts are pretty freaking awesome. They have many different health benefits, including healthy brain function, stress reduction, and cholesterol management. Plus, they are gluten free, sugar free, vegan, and dairy free. What a great snack!

Nuts!

Nuts! Photo credit:  Flickr user s58y

Grabbing a small handful of nuts instantly satisfies my hunger and tastes delicious. Cashews are my absolute favorite!

3. Quaker Popped Rice Snacks

Quaker Rice Snacks

Quaker Rice Snacks: Up close and personal!

These little guys are my alternative to the potato chip. With 13 grams of whole grain, they make a great healthy snack. Though they contain no gluten-based ingredients, Quaker does not actually test this product and therefore cannot advertise it as gluten free. Word of warning to my friends with Celiac disease!

2. Nori

A piece of nori

Nori is SO addicting and SO good! If I leave the plastic container next to me, I’ll eat the entire thing! That’s how good it is! Nori is edible dried seaweed that comes from red algae. It is popular in Japan and Korea.

It’s also totally gluten free and has only 1 gram of sugar per box. An addicting snack that is both delicious and guilt-free.

1. Synergy Kombucha with Chia

Me and my favorite kombucha

Me and my favorite kombucha

Kombucha is my favorite beverage of all time. Kombucha is fermented tea mixed with healthy bacteria and yeast. This particular brand, Synergy, of kombucha adds chia seeds to the mix. The texture is amazing and the flavor is delicious. I definitely recommend it.

Interactive Tick-Borne Illness Map (And a Quick Update)

Discover Magazine is doing something really cool regarding Lyme. This website invites people to plot where they believe they were bitten by a tick and give a 100 word blurb about their story. It’s pretty neat!

When I went to plot my bite, I saw that there was less than 10 plots in California! More people need to fill this thing out. I know for a fact that there are 1000s of people in California who have Lyme. I also know that I am not the only person who was bitten in Sacramento county. Where are all my other Sacramento Lyme support group friends?

Out of curiosity, I also looked up how many plots were in Oregon. There’s only one person so far! Like I said, more people need to do this.

The point of the map is to show just how skewed the CDC’s numbers are. If even 50% of the people in the world with Lyme actually filled this out, we would really surprise some folks! This visualization shows just how wide-spread Lyme really is.

For all my fellow Lymies out there, please fill this out.

Here’s the link!

Interactive Tick-Borne Illness Map | DiscoverMagazine.com.

In other news, I’m really looking forward getting back on antibiotics. Some of my symptoms that had gone away when I was on abx are starting to come back. I’m having really annoying tinnitus, headaches, and insomnia.

The tricky part is that I can’t go back on antibiotics until I take care of my awful awful awful problems with Candida. I’ve tried 4 different anti-fungals and none of them have worked. This week, my LLMD gave me a prescription for some boric acid suppositories. I think it’s too early to tell whether or not they’re working yet, but I have high hopes. The quicker I take care of Candida, the quicker I can get back on antibiotics. And the sooner I get back on those bad boys, the sooner these stupid symptoms will get better.

Also, I just found out I need to get my wisdom teeth pulled. Yaaaaaaaaaay. It’s happening this Friday and I’m worried about it. I’ve heard horror stories of Lymies who get oral procedures done and have their Lyme totally flare up in the process. I decided to be honest with the dentist and tell him I have Lyme. I also told him I’m worried about what’s going to happen afterwards. He said that since my bottom right wisdom tooth is the only one that is a serious risk, he would pull that one first and do the others at a later time. So at least I don’t have to get all four out at once! I’m just trying to be as cautious as possible with this.

Wish me luck, friends!

Best,

Sofia