Day 88: Cognitive Fog

It's been a while and a lot of things have happened! 

I'll start by saying that I'm having a rough day (trying to recover from a cold, lack of sleep, change in medication....all make for a hard and frustrating time) so writing this is somewhat of a task right now.

In the last few weeks I've been on a life high that's kept me from feeling any kind of negative way physically. Last week I proposed to my best friend and most favorite person in the world and she said yes and that energy alone will forever make my life better than I can ever ask for! We spent 10 days in Las Vegas at Rollercon and for the most part, I felt none of the crappy physical issues while there. We drove to Vegas from Portland and back, which felt great at the time, but proved to be an exhausting task hind's sight. 2500 miles is no joke! 

Not too surprisingly, we both got sick during/after the trip. While the Rollercon plague seemed to catch several people who attended, most of them were sick for a handful of days and were able bounce back without any problems. 

Meanwhile, back at the ranch, I'm on my second week of being sick and my body is being an asshole about it. I was able to finally sleep a whole night for the first time in 2 weeks last night, and only because I broke down and took melatonin. The sleep was great but the day after brain fog definitely is NOT. I have work and homework to complete and I feel actually stupid just sitting here looking at a screen, unable to focus on a single task. It's frustrating beyond words and makes me want to give up and just cry. 

The best way to explain this feeling is imagine you're standing in front of your sink in the bathroom; you went there with the intention of brushing your teeth; you recognize all the steps it takes to brush your teeth, you've done this a million times before and yet you stand there staring blankly at the counter not knowing what you're supposed to do, and what steps to take to do it. You feel lost, frustrated and dumb. 

That's me. Today. I know what I'm supposed to do. I know HOW to do those things but the connection isn't there today. That's cognitive fog. And I hate it. All I can do is function the best I can and hope that tomorrow is a better day. 

Some updates on my treatment plan: 

I've plateaued a little bit on the Pearls and it's time for the next step in treatment. Because of my complete inability to fall asleep at night, my doctor and I are making the decision to start me on a very very low dose of Low Dose Naltrexone. (I'll post more about it and its benefits for autoimmune diseases and Lyme later on when my brain is functioning a little better). For now, we are looking for it to help with my sleep issues and to help regulate my thyroid (which we are waiting to confirm is functioning at low levels). My doctor chose this time to start because I'm sick and can't seem to fight a simple cold because I'm not getting the quality rest due to the lack of sleep. I'm staying on the Lightning Pearls because they seem to be a gift from God for most of my other symptoms. The Lightning Pearls aren't fixing things for me, but they are helping me deal with the severity of major symptoms. Once my doctor feels that the LDN and Lightinf Pearls are working well together, I will start the Dragon Pearls which are designed to address a lot of the co-infections of Lyme in an aggressive manner. 

We are also switching my b12 injections from the synthetic kind to the methylated kind because (surprise) my body doesn't process the synthetic kind as well as it needs to. 

All in all, I'm keeping my spirits high because my life is perfect otherwise and I'm happy to be surrounded by so much love and care. One shitty foggy day won't drag me down. 

I'm waiting for the pharmacy to call me and let me know that my LDN and new b12 injections are ready. The wait is probably the worst of it, as I have the patience of a 3 year old. 

As always, loads of love and appreciation. I'll keep everyone posted on how things are going! 

Day 67: things I've learned, and failed to learn.

In the true style of Lyme disease, the last few weeks have been 2 giant leaps forward followed by what feels like hundreds of steps back. Nothing is more frustrating than seeing the light of day and feeling like anything is possible, to getting slammed back to reality. 

I didn't even check to see when I posted last. It's been a while. I know this because I seem to only post when I'm feeling like life is almost certainly ending and I haven't felt that in quite some time. I had a few rough days here and there (mostly because I'm still trying to figure out how to fall asleep faster and get enough rest to make the days count). The last few weeks have been overall fairly great. I was able to do a 5 hour river float (sunburn included) without any major issues. (Thanks lemon water!)

BBQs, brunches and dinners with all the friend, birthday celebrations and even regular gym visits have been handled without any meltdowns. I've had to change my diet pretty drastically (avoiding sugar like its the Black Plague, limiting my carb intake, buying out the entire stock of lemons from my local grocery stores) and avoiding stress as much as possible. The heat wave was something that tested my relationship more than it tested my ability to tolerate heat. I would never in my life wish the mood swings and rage on any of my worst enemies, let alone someone I love. I've had to find new ways to apologize for having a meltdown because I'm hot, there's traffic and I haven't eaten in the last 2 hours. I don't know if it's because she loves me or because she is loaded with every single crystal and stone that helps you practice patience, but Tiggz has not only allowed me to continue living under the same roof, but also seems to understand and love me even more. I've said it a gazillions times and I'll keep saying it, I've used up all of my luck by finding this human and being the recipient of her love. Thank you. Forever. 

Two nights ago we gathered at my favorite place on earth (not quite Disneyland....JOES CRAB SHACK!!) to celebrate my birthday with a group of friends. The food is diet compliant and the company was amazing and made me forget any ailments I may have been feeling that day. Like the 5 year old that I am inside, I demanded frozen custard after dinner. After numerous warnings against it by people who really just know better, I insisted that "I'll be fine!". Rushed over to my favorite custard place (that was closing in 20 minutes) and proceeded to load myself with the TINY cup because "I shouldn't go balls to the wall". Well. My body didn't care about my rationalizing of the tiny cup. Yesterday and today it reminded me (very clearly) why I have to eat the NO size of anything with sugar. The feeling of eminent death has floated over me nonstop since I woke up yesterday. I'm currently sitting in the bathtub saturated with Epsom salt, attempting to expel this evil chemical out of my body via sweat. TINY CUP=NOT WORTH IT. *sigh* 

So here's what I've learned:

1. Baths in the middle of the day are not stupid, they are a necessity. 

2. Lemon water: did I mention how much lemon water is the holy water for the Lymies? 

3. Sugar is the devil. Dressed in the most delicious clothing. 

4. No, seriously. DONT EAT SUGAR. I don't care if it's your birthday and you want custard. 

5. B12 shots. Never ever ever go longer than the prescribed amount of weeks without a shot. Due to some insurance lapse issues, I had to stretch my dosage over a month (rather than 2 weeks) because I didn't want to feel like shit while at Rollercon. Not my best decision. 

6. Laughter and a hug can probably solve every single issue in the world. If laughing with friends and hugs from your favorite person can ease the chaos of a Lyme flare up, then it can certainly solve any issues the world may be facing.*

There are probably a lot more things I've learned, but, you know, cognitive processing is hard. 

I'm gonna go consume an ocean of lemon water and silently cry out sugar tears while I wait for my human to come home and hug me. 

Still thankful for every single thing and every single person in my life. Thank you for tolerating and continuing to support me. 

*I'm not a professional. That statement might be overshooting the effects of laughter and hugs. But worth trying, right? 

Day 41: Feet don't fail me now

I briefly contemplated not counting the days, but then I rationalized it with knowing how long it took for me to feel better. Generally, I would advise against keeping track of things like this because it sort of puts a time limit or a certain expectation of time, perhaps. But for someone who is slightly (heavily) OCD and loves lists, bullet points and generally tracking things...it makes sense. Besides, changing things now would only hurt my brain later because I won't see the list of posts on the right all nicely formatted the same.

I digress....

Feet. Let's talk about that.

So I've been off everything for almost two weeks. The first week because I was told to, the second week because I am currently poor and money didn't quite coincide with the purchase of the next round of pills. And admittedly, I lost the piece of paper that had the next regiment written on it by my doc. So maybe, the reasons are all a little jumbled. The point is, I've been without help for almost two weeks. While I feel pretty shitty physically, the brain fog has been manageable. I'm not going to lie, I can't wait to pick up more Lightning pearl tomorrow so I can start feeling better physically again.

Regardless of the pain, I've skated and went to crossfit this week. Two things I haven't been able to do consistently or concurrently for quite some time. The decision to skate and then crossfit the next day was the best and worst decision in a long time. Skating felt great. I skated in a fairly warm hangar and that wasn't even what got me tired. Doing what I love to do is what got me tired. I jammed in practice! I did a drill where I pushed a blocker while they were stopping. That may not sound like much, but FML it is exhausting! I forgot how much energy it takes to be a jammer. While it hurt and I had to sit out the other half of practice after that, it re-lit the fire under my ass and the love I have for derby, and for jamming. It gives me hope and it gives me goals and that is basically all I can ask for right now.
The next day I went to my first crossfit class since.....I honestly would have to look back at my facebook to see when the last time was. I can safely assume it was before August of last year. It sucked. In the most amazing way. I felt muscles that I haven't felt in a very long time, and I sweated profusely. I also had to stop my workout about 5/6th of the way because....#exhausted. But that's ok. I worked through double unders (whipping my ass only ONCE!), learned a new way to back squat and do snatches, and finished 7 out of 12 rounds of 3snatched/5 ring rows. All in all, it was sufficient enough to make me walk like a swaggier version of Justin Bieber with saggy shorts. I miss that and I welcome it back.

Feet. I haven't forgotten.

My biggest complaint in all of this, is the amount of excruciating pain I feel in my feet. I don't mean pain like if you stand for too long or skate with the wrong size skate. I mean pain like when I get up in the morning and have to put my feet on the floor, I can't. I call it t-rex feet. It's like if you had t-rex arms for your feet. They cramp up and don't want to go flat. If I try to flatten them before they are ready, it feels like someone is ripping tissue and breaking every single bone inside.

I have no idea what that's from but I intend to find out today at my doctor's visit.

Also, today, I get to try cupping! I don't know/understand the benefits of it but its super weird and I'm all for it. Because who doesn't like parts of your back getting suction cupped into a warm tiny glass?

That's all for now.

Day 34: ...and it all falls down

The last few days (maybe just over a week) things have just been collecting and piling up. I don't mean in the literal translation of the term "things", I mean metaphorically speaking. Mentally, emotionally, and physically shit has just been piled on and I've had a hard time dealing with it and coping with it.

For one, the switch to the Thunder Pearls proved to be a little too harsh on my body. I had to only take it for a week (only getting to 6 pills/day) before my doctor told me to stop everything for a week so I can let my body rest and then go back to Lightning.

Here's what I've felt in a nutshell(ish):

Mentally: While Thunder made me feel hyperfocused and able to conquer the world mentally, I also felt high. Not high as in high spirits, just high like I was up all night smoking crack. Stopping Thunder has resulted in a full comeback of the brain fog. I'm back to pausing when I'm trying to have a conversation with people, and back to forgetting words and connecting my brain to my mouth. It's been supremely hard to get motivated to complete any task, let alone try and complete an entire day of work. Frustration is a really nice word for what I feel in terms of my mental capacity right now.

Physically: I honestly don't really remember what I felt while on Thunder. (I should probably do a better job of journaling so that this doesn't happen). I think I was ok? Although my doctor said that the dark circles around my eyes had returned and with a vengeance when she saw me after being on Thunder for a week. So I'm going to say that while I felt "normal", I probably wasn't. This doesn't mean Thunder is bad. It actually means it's great. It means it works. REALLY well. The presence of dark circles around my eyes means I am fighting something. This time around it means the bacteria is super unhappy that I'm trying to evict it, and in a really forceful way. After this week ends, I am to get back on Lightning to calm my nervous system and then I believe we are back on Thunder at a lower dose. Right now, I'm on nothing and I hate it. Along with the brain fog, the fibro-like pain is back in full force. The lower back pain is back for the first time since before my back surgery. Everything is so inflamed that my body is on full freak out mode.  I can't sleep, even though when I do finally fall asleep, I sleep through the night and I sleep well. The falling asleep portion is what I'm really struggling with.

Emotionally: This is by far the worst part. I noticed that while I was on Lightning my overall mood was so much better. I was hopeful. The mood swings were minimal and I was able to cope with emotions way better. I don't think Thunder made a huge difference in that. In fact, I'm pretty sure it helped make it even better. But I wasn't taking it long enough to notice. What's happened since I've been off everything is a complete fucking disaster. For those of you who are able to go through PMS every month, imagine everyday being the day before your period. That's my every day right now. I'm emotional, I'm sad, I'm irrational, I'm all over the spectrum of anger and rage. I am a fucking mess. I understand that the heat in the last couple of days didn't help, but the other day I had a full blown rage attack because people were "in my way" while I was driving. This happened more than one time. Neither time was ..........(I just want to throw it in here that it just took me a full 5 minutes to remember what I was saying and what word I was going to use. I literally forgot what I was thinking mid thought. A glimpse into the daily struggle.).......justified. I'll digress because I forgot where I was going with that.

Alongside the rage and irrational anger and frustration, came the ugly head of depression. Dare I admit that I am falling into it. I hate everything about myself at the moment. I have days where I can't and won't look at myself in the mirror because I don't know who that is looking back. I hate my hair, I hate my skin, I hate my body, I hate my health and I hate that I can't snap my finger and magically make it all change and go away.

Before everyone gets offended, frustrated and sad, please understand that this is not MY norm and this is just an open book of MY thoughts and feelings.

Let me explain it this way: I grew up as a jock. I started out my athletic life at the age of 3 where I was in dance 5 days a week and in gymnastics the other 2 days. I've been sweating and active since then. I've played basketball, softball, ran track, did longs jump and triple jump, played field hockey, ice hockey, derby and trained in gyms and crossfit. I've had an athletic body since.....always. ALWAYS. My norm has always been a lean body and the ability to eat basically everything and anything and maintain my body weight within 5lbs. I've never placed value on body weight or image to be honest. I accept people in every size and shape. I sincerely don't see it, I see people for people and for their soul. Except when it comes to myself. What do we call that? Low self-esteem? Body image issues? or just a lack of coping skills when your body decides to take a shit on you and be so sick that you are unable to do anything you used to? This has left me with over a year of inactivity. My eating habits haven't changed much. I eat fairly healthy with the regular dose of chocolate and ice cream. Why? Because that is what I'm used to. I used to eat junk food daily and maintain the same weight. Now I eat grilled meat, healthy carbs, and veggies and have gained 30lbs. 30 FUCKING POUNDS. Sure it may not seem like a lot to most people, but when an athlete that is used to being 120lbs and 16% body fat is faced with a 30lbs weight gain that puts them into the 28% body fat bracket, all hell comes crashing down. So, yes, the confidence and self-esteem have come tumbling down and self-pity and tears have replaced them.  You know how everyone has that one outfit that they can put on and feel like king shit of fuck mountain? I don't have that anymore. Nothing fits and nothing looks or feels like that right now. And that is a kick in the confidence and feelings nutsack.

I don't really know where I'm going with this....there really isn't a point. The idea is that this is reality and this is life. And that's ok. I'm not giving up on anything or crying out for help. I have fantastic support in my life and I appreciate it daily. I guess I just want to show you that no matter what walks of life we come from, we all go through the same pit of hell at some point. The wonderful thing about life is that nothing, absolutely nothing, is forever. The shitty parts pass too. You just have to be patient and give yourself the time to feel it all. And I'm over here just feeling the shit out of all of it.


....til next time. 

Day 24: The Ick

Yesterday morning I started the next cycle of treatment; Thunder Pearls. 

I took the first two pills in the morning, ate a light breakfast and went to the hangar to volunteer at scrimmage. Let me just try to bottle the experience of Thunder....I've never taken any drugs in my lifetime so I can't really compare it to anything, but I imagine if one were to combine cocaine and some sort of anti ADD medication, they would achieve the first dose of Thunder. 

My usual brain fog turned upside down and became the most hyper focused mental activity I've ever experienced in my entire life. Imagine being able to hear, see, feel, taste, and smell everything in HD....ALL AT THE SAME TIME. It's not a pleasant feeling by any means. In fact, it made me uncomfortable and anxious. I felt so over stimulated. And at the same time, I was actually able to process most of what was going on. This was new. 

After helping out with scrimmage, I was absolutely exhausted. All I really wanted to do was nap. That proves to be a problem in my life. Always. I can't nap nor do I ever want to miss out on the day by napping. Long story short, I didn't nap and in fact, after eating and properly hydrating myself (at which i am SO TERRIBLE still) I was ok and able to participate in an amazing day of showing our friend around who made the trip to PDX with my car from LA. (YAY!!) I'm certain that the very low dose of 2 pills wore off just after lunch so I felt much better. 

While the focus was there, something else familiar was also back. Pain. I guess I'd forgotten how much my body hurts with this disease when I was taking the Lighting pills because they are designed to calm the nervous system and aid with the neurological misfires. Thunder has not only failed to suppress the pain, but it seems to have stirred up some deeper pains and kicked the toxins into high gear. I missed a day of putting lemons in my water and felt like I was for sure going to die. 

It's been hot the last few days, and as I mentioned before, the heat makes me extremely uncomfortable. Today was one of those REALLY uncomfortable days. At one point, we visited an antique store in Sellwood and because it was so muggy and warm in there, I felt the tunnel vision and profuse sweating creep up on me. I hate that feeling. I did what any normal person would do in that situation. I took my shoes and socks off and stood barefoot in the middle of the store, paying for my finds. Maybe that's just my normal. There's something about having my feet exposed and touching the ground that calms me and allows my core temperature to drop when I feel panicked. 

I'd also realized I hadn't had any water for quite a few hours at that point. Luckily, at dinner I was able to ask for an entire plate of lemon wedges to shove into my water, and proceeded to chug as much of it as I could without drowning. Almost instantly, I felt better. I still had my shoes off at this point, so I won't speculate what helped me most. 

So far, I hate thunder. It's pissing off the ick (that's become my nickname for this shitty bacteria) and making me super sensitive to absolutely everything that triggers flare-ups. (Sugars, carbs, etc) 

I've got at least 2 and a half more weeks of this, with increasing dosage, and I cannot WAIT to see how that makes me feel. <insert heavy sarcasm> 

I won't lie, I hate this process. Physically I've hated the last two days that have left me feeling crippled. Mentally, I'm tired and hopeful still, somehow. Emotionally, I've loved the last two days because I got to spend them with my person and a great friend, doing really great things. I even finally got to go to Joe's Crab Shack and destroy a bucket of exoskeletal sea life. 

Fuck you, Lyme. You can't keep me from enjoying the company of amazing people that make my face light up with smiles.   

Day 19: blue.

Sometimes, even when absolutely everything is going well in your life, you still feel like someone pooped in your cereal bowl. 

It's true. While for the most part I'm a happy person who has everything someone would ever want, I wake up on the wrong side of life. I don't know if I can classify it as depression. I've been depressed before and this doesn't feel like that awful place. Sometimes I'm just....blue. I'm ok. Life is good. Things are still funny. The dogs still make me smile. My girlfriend still makes me feel like the luckiest person alive. It's just that I feel emotionally under the weather. 

I don't know what it is, but I also don't really want to over analyze it. Because sometimes, you just want to blurt it out and let it be. 

Today, I just wanted the weather to match my emotional state of mind. That's all. 

Day 18: Sleep.

....or the lack thereof. 

Ever since I've started this treatment I feel like my insomnia has crept back in. I don't know if it's a coincidence or not but man, I hate it. 

Last night after running around all day doing physical things, I was exhausted. Physically and mentally. What time did I finally fall asleep? (With the help of 5mg malatonin) 3am. I don't sleep until noon, I don't even sleep until 9am. I usually wake up with Tiggz and slowly get out of bed by 8:30. Aside from, of course, the nights when I take melatonin. Then I'm unconscious until 11am. 

I absolutely hate not being able to achieve that comfortable feeling of crawling into bed, physically tired, and turning off my brain for a good night's rest. 

I see my doctor next week and I'm hoping we can address this issue somehow. I miss sound sleep 😩