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 😩

Day 17: today I hiked, and didn't die.

In the words of Ice Cube, today was a good day. 

More and more I'm starting to let the bad days pass without really paying much attention to them, and really trying to take in all the good days in between. I'm not entirely sure if I'm actually feeling better (because there are still a ton of times where I am very much down and feel like life is sucking me dry) or if knowing I'm not doing this on my own and that there's a bright light at the end of the tunnel is making it easier to deal with the shitty days. When I feel crappy, I simply know it will pass and I am able to reach out to friends and talk it through. Sure I've had some days in the last week or so where I basically spent the entire day in bed, but I also had days where I spent 7 hours at the Hangar watching my league practice and scrimmage and talking to friends I haven't seen in a while. 

I also had a day like today, where we woke up and decided it was time to venture out to this amazingly gorgeous city. I've been wanting to get out to some nature and maybe even go for a hike! We did that and then some. 

We ate and gathered the pups and drove down to Tryon Creek State Park for a much deserved leisurely hike. I could not have been happier with our decision! 

We probably only did about 2.5 miles total, but being outdoors and walking with my most favorite beings made my soul smile. I'm happy to report that I wasn't the one to poop out at the end. It was Ducati....and I carried her the last part of the hike. 

It felt amazing. I felt amazing. 

In fact, I felt so amazing that we decided to drop off the exhausted furs at home and go check out the fair that's going on at the riverfront. After walking around, eating the best Mexican food (frutas and elote included), picking up some ridiculous customized airbrushed trucker hats, and side eyeing all the rides we couldn't fathom riding, we were done with it. 

Still feeling ok (mainly because hydration saves your life!) we decided to drive around and get lost in our new city. We headed over to St. John's where Tigglet showed me Cathedral Park. Obviously I fell in love and want to buy every house in the vicinity. 

At this point (6pm) I was crashing and it was time to head home. 

I'm grateful for the 8 hours of energy that my body gave me today. It's nearly midnight and my body is exhausted but my heart and brain are so amazingly filled with happiness. I couldn't wish for a better way to spend my day. Thank you, Tigglet, for your patience and your willingness to do all the things I love on short notice. Thank you for making my day and my life that much happier.  

Day 11: brighter side of things

It's true that sometimes you find inspiration and hope in the most unlikely places. This morning when I woke up I read my messages, emails and Facebook posts as I usually do, what I wasn't expecting was a heartfelt comment from my girlfriend's ex-boyfriend. He not only made me feel validated (unintentionally we all seek validation when we suffer from something that is, for all intents and purposes, invisible to the eye) but also gave me a sense of peace in this rough patch of life. Coming from someone who could have chosen to resent me or even hate me, his words and sentiments are so deeply appreciated. I took away the message that it's ok to do the best that I can on any given day. Even if that best is waking up and accomplishing nothing. What I accomplish that day is waking up and being happy with my life and the steps I'm taking to make myself healthy again. 

I felt great today. Mentally and emotionally. Physically I had some hiccups (of the metaphoric kind), but that's ok. I'm in a position in my life where I am able to take a step back and take a nap when my body asks for one. And I did just that. A 30 minute nap gave me new life midday today. 

I'm thankful for that. 

I'm thankful for my girlfriend, who understands and supports me. I'm thankful for the people in our lives. And I'm thankful for the person she is because of the people in her life. Past and present. 

Day 10: it's in the boooooones

When I went to see what day I'm on, I gotta admit I was a little shocked and disappointed that it's only been 10 days. 

While most days are about the same as others, there have been about 3 of them where I hated everything in life. Everything. Including the air particles around me. Yesterday was one of those days. In our household we have adopted a cute term for something that feels absolutely awful. You know that feeling you get after walking all day at Disneyland? Without breaks....in the heat....without water....and a huge crowd..? Where you are exhausted and your feet feel like you have cement socks on? We call that Disneyland feet. Well, yesterday I had Disneyland legs. No. I did not go to Disneyland. I walked. About 20 minutes to be exact. We had to run some errands and decided to park the car between stores rather than try and find parking by every store. That ended up being my worst enemy. 

Part of the woes of Lyme disease is that everything just works opposite of how it's supposed to. Your body is constantly in a hot flash, so even walking in decent weather makes you sweat profusely. The sun feels great until that starts to bother you as well. Your eyes hurt from the sun rays. Your hands and joints hurt when you sit in an air conditioned room. There's really no winning. I've given up on trying to find a happy medium because it just doesn't exist. I go from being hella hot to cold and in pain. 

Thanks to a friend who is also going though this, I've learned a few new tricks to combat these uncomfortable things. Lemon water: it's by far the thing that's saved me from tears on a daily basis. The lemon helps detoxify the body and makes it a hell of a lot easier to deal with the pain. Hot baths/showers: same concept. Helps get rid of all the toxins by sweating. No matter how shitty you feel while you're taking a hot bath or shower, you always end up feeling so much better after. 

I've also learned about a few more things that have been somewhat of a mystery.

My recent inability to lose weight no matter what I did, and some serious mood swings that come out of nowhere (most of the times completely unwarranted). I've noticed the weight gain after surgery and thought it was normal since I had not been able to exercise much. I thought getting back to eating better and skating would take that right off. I was sadly wrong. No amount of diet change or activity has even put a dent into the weight. Normally I wouldn't even really notice or care, but I've always been able to regulate my weight fairly easily in the past. (And I don't mean when I was 18). As it turns out, the Lyme actually affects my thyroid. Joy! So while I've been used to a fast metabolism that responds quickly to diet changes, now I'm stuck with an under active thyroid that's basically doing whatever it wants and keeping whatever weight it wants. 

As if it wasn't frustrating enough to feel flubbery and sick, I've noticed weird mood swings that are completely unrelated to anything in life. I get waves of absolute rage and anger that is so bad that it even scares ME. It doesn't last long and I definitely know not to act out on any of those irrational feelings, but holy shit I hate it. It's unfair to everyone around me and it absolutely exhausts and frustrates me. Apparently, however, this is the norm for Lyme. 

I'm hoping as treatment goes on, these symptoms subside and I can function as myself again. 

For now, I understand what's happening and that helps to keep my spirits up. 

Tonight, I'm gonna stick to a plan we made a while ago and try to skate a little at the Oaks 80s Gay Skate! Even if I troll around for 15 minutes and watch the rest, I will come home happy. 

I'm leaving the Epsom salt and bubble bath out so I can jump straight into what will be a necessary bath afterwards.

That's all for now  

Day 4: it herx so bad

I realize that it's only the beginning of day 4 but I wanted to post now because I shouldn't just post when I feel well enough to put sentences together and form a cohesive post.

I woke up this morning (earlier than normal) and have felt progressively worse since then. Everything hurts, my back, my hips and my feet feel like I have cement in them. It feels like there's an elephant on my chest. I can't take a decent breath in and I'm dizzy. I have just about enough energy to take my pills and make my morning smoothie so I can take the probiotics. I can actually FEEL the toxins having a party in my body. 

This is the Herx effect everyone kept asking about. It's here. And it fucking sucks. Really badly. But at least this means my body is fighting....?

I had a really important thing planned today which will have to be rescheduled and I'm beyond disappointed about it. As someone who normally ignores illness and pushes beyond it, I'm in a really strange place right now. I physically cannot ignore this. I physically and mentally cannot push through this. I simply have to accept and realize that today is just a bad day and that's OK! Part of the treatment process is knowing that you will feel worse before you feel better. Much worse. I'm hoping this is the much worse part, because I can't imagine feeling shittier. I have to accept that I'm not "being a pansy about it" and this is real and it will pass. 

Gonna go work through this.....just need to get up. 

Day 1: and so it begins

Day 1

Day one is in the books. 

While I didn't want to bore anyone with the detail of my regiment in my previous post, I figured I might as well mention it now because when I was researching this treatment I didn't find much feedback from people that were using it. It's newer and it supposedly works really well, but not many people have given actual reviews or feedback of their experiences while going through treatment. Every case is different so I'm assuming my dosage is different than anyone else's might be.

I'm on the Classic Pearls regiment of Lightning and Thunder. The classic pearls formulations are made for many things, but the Lightening and Thunder formulas are created for treatment of Lyme disease as its main purpose. There are also the Dragon and Bamboo formulas that will be incorporated but for now, I'm just doing the two.

My first month looks like this:

Lighting:

2capsules 2x day for 3 days

3capsules 2x day for 3 days

5capsules 2x day for 15 days

Then

Thunder:

2capsules 2x day for 3 days

3capsules 2x day for 3 days 

5capsules 2x day until end of week 4

Then we reconvene, see how I'm doing and get the next month set up.

I'm supplementing with liquid vitamin d daily, B12 shots every two weeks, a scoop of high potency probiotics with my smoothies in the morning, and my regular CLA intake (2capsules after every meal). I'm drinking double the amount of water than I usually did, which puts me at just about a gallon per day (I'm trying really hard on this one), and I'm making sure to eat as much fiber as possible. The supplements, fiber and water are meant to help with the removal of the toxins that are produced by killing off the bacteria causing all this hell inside the body. 

Today's experience is that I felt great for about 2 hours after my first two capsules of Lightening; brain fog was relatively low, muscles didn't hurt and my energy level was above average (I even had enough energy to do some drawing). We went to a friend's BBQ and just before we got there my everything dropped to levels well below normal. I was exhausted by the time we said hi to everyone and was just about ready to nap 15 minutes into eating a burger. The brain fog got so bad that on the way home I pretty much just sat in the car and stared blankly out the window as my girlfriend tried to distract me by showing me neat houses on the way home. I've dealt with this for so long that I was able to push through it and still go grocery shopping, run an errand for a friend and cook dinner. Everything gets done regardless of how I feel, but it all just feels like autopilot most of the time. I've now taken the second 2 capsules and my brain fog is much less. I'm still exhausted, but that's probably because I refuse to lay down when my body is screaming for a nap.

¯\_(ツ)_/¯ 

I have to disclaim that today was a relatively warm day for Portland (85degrees) and I am supremely heat sensitive. I generally feel like I'm unable to function in weather that is over 75 degrees and end up having acute anxiety attacks when I start sweating when I'm not doing anything to warrant sweating. In short: I don't do warm weather. 

I'm also day 1 of my menstrual cycle, which is always a fun day. Maybe it's too much information, but it also happens to be one of the biggest issues I have with Lyme. My cycles have become almost unbearable. Not just your regular cramps, bleeding and mood swings. I'm talking days of debilitating heavy bleeding with clots, vertigo, migraines, and exhaustion. 

The combination of these things today made me super bummed and left me helpless mentally. 

I know things will get better physically, but some days, it's really rough mentally and emotionally. 

I'm thankful for friends that understand and my family that always talks me off my mental breakdown ledge. I'm letting myself get in bed and snuggle with my tiny family now....tomorrow, we get to sleep in! 

You put the Lyme in the Coconut...

I have to preface this by saying that as I write this, I'm in the middle of one of my worst flare ups and I've been struggling with cognitive issues for about 2 weeks. So if this reads interrupted or out of order it's because that's how my brain has decided to function at the moment.

I will also forewarn you that this will likely be lengthy. I won't be upset if you don't read it, or take breaks while reading. This isn't meant as a cry for help or even for anyone specific to read. It's really just for my own reference because I've found that writing about things usually helps. 

That being said, I'll explain what all that means:

If you've known me in the last 6-10 years or have asked or have accidentally found out that I've been struggling with my health for about that long (probably longer, but the last 6 or so years it's been exponentially harder to handle). You know that I've been having issues with exhaustion, extreme brain fog, unexplained fibro pain, an unexplained B12 deficiency, balance issues, anxiety attacks, panic attacks and that pesky ole short term memory loss. 

In 2010 one single doctor gave a shit and figured out that the reason I was barely able to function was because my B12 levels were extremely low. When I say extremely low, I mean that my levels were at 126 units. For reference, when one's levels are at 300 units, they experience symptoms of dementia. At that point I had visited close to 10 doctors that all told me I was fine and that it was all in my head. I needed to relax and let whatever "virus" pass and to stop being a hypochondriac. One actually told me I should seek psychiatric help. Not that being told you were crazy wasn't helpful, but as you can imagine, when you're so down and unable to function, hearing that it's just in your head sorta threw me into a depression and a basic unwillingness to live. I had no energy to fight for being awake, let alone trying to convince a trusted doctor that something is very seriously wrong. But I digress. ONE of them believed me and at least figured out a symptom that could be somewhat managed. I've been doing B12 injections at home since then. It's helped me crawl out of my hole of, what I felt was, certain death. I was able to get back to working, back to being a social human, back to playing sports and back to working out and generally being a part of society. I learned to deal with all the other symptoms as long as I was just able to wake up, work and have a life. The quality of that life didn't matter yet. 

I won't go into the blessing that is meeting the person that saves your life by simply caring about you....but know that the only real reason I decided to get back to the bottom of what's wrong is because my girlfriend asked me all the right questions and made me realize that "just living" wasn't what I deserved. I deserved to live WELL and feel WELL. All the time. Not just once or twice a year. 

Last year around August I went to see a doctor for the back problems I've been having. In the process of sorting those out (which culminated with lower back surgery) there were loads of blood tests and other tests. On an educated whim, my doctor ordered a Lyme test. Wouldn't you guess it...both tests came back positive. Lyme disease? But how? When? HOW?? 

The minor details of "how" don't really matter. What matters is, I was officially diagnosed with it and it was like Moses himself parted the sea of confusion and everything made so much goddamn sense! And there I was, 2 weeks away from major back surgery with a diagnosis of Lyme in my hand. Like you, I had no idea what Lyme was, let alone how someone deals with it or treats it...? Was there even treatment? Or do I just forego the back surgery and go pick out a casket to eventually be buried in it. Was I supposed to quit my life and lay in bed and cry? Call my previous partners and tell them "I HAVE THE LYME. YOU SHOULD GET TESTED TOO"? WHAT WAS I TO DO??

I did none of those. I did what any normal person would do. I ignored it and decided to get my back fixed first and figure out this Lyme shit later. And so I did. In September(2014) I had my surgery and instantly had relief from my back issues. I was ecstatic. I would have 6 months of rehab and I would be back on skates and enjoying life! Because, obviously, that's what was missing in my life! That was the reason I felt so shitty for so long and when I got it done, I would be back to being ME! 

Wrong. 

I had completely forgotten about that other diagnosis. LYME. 

After a very long 6 months of inactivity and recovery (and 20 or 35 lbs gained....I stopped counting) I thought I would get back on my skates. Reality and humble pie have never gone so well together as it did that day. After 20 mins of skating around, everything hurt. I saw a dark tunnel in my vision, I felt like breakfast/lunch/last nights dinner were about to leave my body and my entire body cramped up. I was done. There was no way I could skate. 3 days after those 20 minutes of skating, my body was still sore. I was still exhausted and all I really wanted to do was lay down and cry. 

It was time. I had to figure out what to do with this bullshit Lyme disease diagnosis. 

I had read so many articles, studies, forums, and medical reviews on the topic at that point that I had panic attacks just thinking about it. Thanks again to my girlfriend, we were able to sort out that I had two options of treatment: antibiotics (which sounded more like chemo) and Chinese medicine. 

Nothing about bombarding my body with HEAVY doses of antibiotics for months at a time (for God knows how many times in my life) seemed reasonable or rational. If I was already feeling like I had zero health, how would destroying my insides with antibiotics help me feel better?! I decided that was not the route I wanted to try. I'm not everyone, and everyone is not me. That was just MY choice. I'm sure that option helps many people. 

I opted for Chinese medicine. I hesitantly went to see a naturopath. She patiently and attentively listened to my laundry list of issues and even joked with me. She then asked me what I knew about the disease and if I'd read about the options for treatment. I blurted out what I remembered (which probably wasn't much because it's a struggle to remember what happened 30 minutes ago, let alone what I've read in the last month) and told her that between the two options, I leaned more towards the herbal option. She tended to agree but still explained to me the options of both. After hours of discussion and explaining everything, we decided on a treatment plan. We both agreed that since I've had all these symptoms for such a long time, it was best to go the aggressive route. (this is where I realized that I've had these problems for far longer than 10 years....and likely was born with it, or got bitten at a very young age).

I'll spare you the boring details of my prescribed regiment of pills and supplements; just know that it looks and sounds intimidating and I've now designated a shelf in the bathroom just for this.

So today I start my Chinese herbs. I'm terrified. I hate medicine. Eastern, Western, herbal, synthetic....I hate it. I'm terrified I'll be allergic to whatever I need to take. I'm terrified I will feel worse. I don't even know if that's a possibility....can someone feel worse than shit on a daily basis? I guess it's time to find out. I'm armed with bottles of water, activated charcoal and fiber supplements in case all hell breaks loose and I need to flush my body. I feel like a helicopter mom....on myself. I hate the anxiety to starting something new. Something that will probably make me better. Probably. Hopefully! 

So there it is. I put my faith into a couple of bottles of tactfully blended dried up herbs. My wellness. My happiness. My life. My BEING. All sitting and patiently waiting to see if this will help. If it will help me get ME back. Someone that laughs. Someone that speaks and thinks like an educated human. Someone that can carry on a conversation without pausing and losing train of thought. Someone that can function past 10pm. Someone that has the physical abilities of a trained horse. Someone that enjoys life. 

I just want myself back. Simple as that.

That's the story. 

I'm prepared to answer questions, lose and gain friends, feel worse and feel better, and most importantly to fight this shit tooth and nail. If not for anything, I hope this helps someone else in any small way.