Join me as I take you through my journey, Operation: Road to Recovery where I've drastically (positively) changed almost every aspect of my life in hopes of finding relief from many different medical problems I've been facing since childhood.
"Cause if you do what you've always done / You'll always get what you've always got." -Aerosmith
Delicious, addictive, mind-altering, and toxic; Gluten and Crack are not far from each other on my list of dangerous and illegal substances.
Of course, I'm asking myself why in the world I would have ever let myself slip back into the spiraling, black hole of death that is the ooey, gooey, stretchy, crunchy, euphoric Gluten?
I have no answer other than, I am a weakling. I gave in to my urges, mostly led by the lack of fast, easy, and healthy foods in the fridge. While struggling just to stay awake and function throughout the day, it's definitely not easy to prepare, cook, and eat nutritious meals/snacks 3-6 times daily.
While, I'd like to place 99% of the blame on my roommate who follows the diet of a sewage troll, it's all on me. I am responsible for the choices I make in my life, as well as the consequences that follow. And, I'm definitely paying for my bad decisions.
Today marks day 31 (the start of Month 2) of my new herbal treatment protocol for Lyme Disease and Co-infections. I'm relieved to say that this past month sort of flew by. I was very anxious about such a drastic change in treatment, and how my body was going to react. So far, I think I am tolerating it okay! I look back through this month, and haven't had any huge, scary Herxheimer reactions. Rather, I've been in an extremely increased amount of pain. (WRISTS, Ankle, Knee, Neck, Fingers, Head/Migraines.)
I think it's safe to say that these are actually a result of Glutenizing my body. I am majorly inflamed, bloated, EXHAUSTED, irritable, mildly depressed, and very, very dizzy. When someone hears about a food allergy they immediately think about an anaphylactic shock type of reaction, or stomach symptoms. NOT neurological or physical reactions. I've proven to myself through several highly experimental tests, that indeed, Gluten and food allergies are both detrimental to my brain and my body.
I'm not sure whether it is the temptation, or the skepticism that keeps me coming back for more. Regardless, I need help. It's gotten to the point of feeling like there are monsters inside of me controlling my food impulses. I FEEL like a monster. I can't stop. (I hate the word "can't", but I'm so far in a hole that I don't feel like there's a way out at this point.)
Do you want to know the sad part? I'm not even eating anything that spectacular. I'm eating toast. And LOTS of it. WTF is wrong with me?! You would think I'd be going for junk food, or decadent desserts, but nope. I am craving toast. Not just any toast, mind you...Sourdough toast. My Kryptonite. It's quick, easy, delicious, and poisonous. Not only is the gluten making me ill, but the yeast is surely feeding my Lyme and Candida. =(
Logically, I should just be able to tell myself "HEY, STOP IT!" Sadly, I've fallen too deep into the abyss. I'm actually at the point of looking for a new place to live because I cannot "Just Say No". I need to be in a clean and safe environment to be able to detox and get healthy.
It frustrates me because I know I'm not a weak person. I'd surely be dead, considering all that I've overcome; but throw toxic, mind-altering substances into the mix, and it's a whole other ballgame.
Welp, I've done it before, so I can do it again! Let's kick Gluten in the ass!
"Society" wrongfully portrays to us that people in wheelchairs are somehow less valuable. Just because someone's body is functioning differently, doesn't make them any less of a person.
Additionally, not all wheelchair users are paralyzed, as many people might assume. If you see someone in a wheelchair miraculously stand up, don't gasp, or stare at, or judge them. Using a wheelchair is probably not something someone would do willingly, if they had a choice.
It's not easy for chronically ill individuals to accept help from others, and it's certainly not easy to accept that our body is not doing what it is supposed to. There should be no shame in asking for help. (Especially not from doctors...doctors who give up and shove a prescription for painkillers in your red, splotchy, teary-eyed face while begging for their help to get a wheelchair, after months of toying with the idea in my mind, and FINALLY accepting it. See previous post.)
Do I want to have to use a wheelchair, nope. Am I excited to have one? Absolutely.
This past week or so, I've realized just how much MORE of a person I feel like while using my wheelchair. This might seem like a foreign concept to most. Let me explain. Using my wheelchair gives me the freedom to get around with less pain, and more mental clarity and stamina. (Standing causes near blackouts that are exhausting, and my body's inability to regulate my heart rate and blood pressure, thus, brain function decreases drastically!) It gives me the independence of not having to hold onto my mom when I feel like I'm going to fall over.
I still need a push every now and then, due to weakness in my hands and wrists, that I'm hoping will get stronger with time and treatment. I am, however, building incredible muscles in my arms. Not a bad thing. ;) There are still a few kinks that need straightened out with my chair, but hey, I'm beyond grateful to have it!!
Have I mentioned bowling??
Leaving the house has been a rare occasion the last few years, more so in the past few months after starting treatment for my Lyme Disease+Co. So, you'll certainly understand my excitement (and hesitation) upon being invited to a friend's Birthday Bowling Celebration. I thought to myself, "Ohmigosh! Maybe I can actually participate!!!" I have been bowling years ago, each time becoming a red, splotchy, sweaty, painful mess.
Well, guess what! I did it!
I filled up my "gas tank" (loaded up on IV fluids), shot myself in the bum, showered, put on some comfy, stretchy clothes, and called ahead to ensure accessibility, (and was pleasantly surprised with complimentary valet and mostly level floors! I still needed help traversing the large building, but my friends eagerly offered a push! I was nervous because they didn't know I would be in a wheelchair, but there was nearly zero awkwardness! Which is awesome, because we always have fun, even if it's just sitting around drinking tea and bulls***ting. It's so nice to feel included.) I remembered my wrist splint, asked for the lightest ball they had, activated the bumpers, and let her rip!
I actually had a lot of fun! Without having to worry if I could stand, or not having a place to sit if I felt like passing out, I was able to just be. This is a really strange feeling for me, because of my POTS, my body is in constant panic while upright, it's hard to really take anything in.
I was prepared for the stares, and the pointing, and judgement from strangers. However, a tiny, adorable child stared at me while smiling brightly, I smiled back even brighter, while waving to her. I can only assume that her favorite color is pink, too! 😁
The Aftermath.
I've barely left bed all week, writhing in pain, as I'm still recooperating from the few hours of social activity. And, I know I've made things worse by eating an allergen, but, were those few hours of "normalcy" worth it? Hell yes.
My Lyme Disease+Co may be kicking my ass, but I won't stop kicking it back!!
I've been trying to look at the bigger picture, and just trying to enjoy life as best as I can. It's all about the little things. We can sit around and suffer forever, or we can make the best of it, now! (And suffer later.)
So, while I don't think I'll be going bowling any time in the immediate future, I have some pretty cool memories of my first chaired-outing! I am eager to try even more things that I have been unable to do in the past because of my body's limitations! It's all about adaptability, an open mind, and a positive mental attitude.
I recorded a read-through of my Lyme Disease Journey for those of you who have difficulty reading long bits of text.
[Yikes! Hello there, it's been a little while since I've last written an update. I have, however recorded a few video snippets here and there and will eventually use them in some form or another.
I saw my LLMD (Lyme Literate Doctor) back in the end of January and it has been a bit of a bumpy ride thus far. Today (3/3/14) marks day 40 since starting any "official" form of treatment for Lyme Disease! Dang. Time flies when you're having fun! ;)
Since I saw my LLMD, I have:
Had multiple vials of blood extracted, on multiple days, from my already poor, dehydrated body;
Pooped in a box (several vials actually) and FedEx'd it across the country so some poor dude in Georgia (?) can sift through and test it for other parasites or organisms;
Made 2 trips to the hospital (45 min away) to have blood drawn, that I then had to ship via UPS Overnight Air for a very important heavy metals panel, only for it to not arrive within the 24 hour window to be tested, (I am waiting to hear if the 2nd batch arrived in time);
Had an EKG prior to starting treatment.
Seen 2, scratch that, 3 other doctors (2 primary care MDs and 1 psychologist, who is awesome, might I add)...
I am still in the process of getting my wheelchair. I could never have imagined how difficult it would be.
I go to a PT/OT this Thursday for evaluation and maybe they'll have some sort of suggestions/ideas to help me! Walking has become excruciatingly painful and very dizzy-making.
I've been very near ER status for dehydration and dysautonomia flares. I'm doing the best I can to avoid it.
My first appointment with my LLMD was so overwhelmingly positive that I do, indeed, have Lyme Disease and more than likely 1 or more co-infection. I was informed by my LLMD that a bulls-eye rash is, indeed, indicative of Lyme Disease even by Centers for Disease Control (CDC) standards. (The CDC is a little bit backwards when it comes to Lyme Disease diagnosis guidelines and treatment. ILADS (International Lyme and Associated Diseases Society) is very knowledgeable and reputable.)
Let it be noted that:
I had an Erythema Migrans (EM) rash (bulls-eye rash) in Sept. 2009,
I have been very symptomatic since childhood,
I have tested, on my insistence, (negative) for Lyme on at least 3 separate occasions. (2007, 2010, 2013-CSF lumbar puncture).
I had very limited knowledge/education regarding Lyme or co-infections back then, so I'm not sure exactly which tests were run. More than likely, just the basic ELISA Lyme Panel that is notoriously inaccurate. Regardless, they were all negative.
Not one doctor thought or wanted to investigate further.
For the last 7 years, after becoming so ill I had to drop out of college, I have been symptomatically treating Dysautonomia, POTS, Daily Migraines, Fibromyalgia, Sjogren’s, Hashimoto’s Thyroiditis, all to no avail. In reality, I was further toxifying my already delicate body with countless unnecessary (unbeneficial) medications, many of which led to greater complications and side effects. At my first extreme low-point, ~2009/2010ish, I was swallowing 13+ prescribed pills a day. I was hospitalized for mental breakdowns and major depression on two separate occasions. As well as being hospitalized for 5 days for a DHE Migraine protocol to try to break the 13 year cycle of daily migraines. (Read: Neuroborreliosis)
2012 was the year I decided I needed to take my health and life into my own hands and pursue a more natural approach. I started incorporating green smoothies into my daily routine. I, then moved to Southern California in search of my health/life. I found a few doctors who were as supportive as they knew how to be, given my “unique” situation. I started pushing myself beyond my body’s limits and started exercising (mostly swimming) every day, only to remain incapacitated afterward. I completely changed my eating plan, cutting out foods I am allergic to, and focused on getting a life, a future, and above all - health.
100 lbs less than my highest recorded weight, (while still technically overweight), I gained confidence, for sure, but my body was not getting stronger. It was wasting away. I looked great, but felt like death. My biggest issues at this point, were/are excruciating joint pain, daily migraines, and nearly passing out several times every day. The only drugs I remained on were the ones that prevented me from passing out, along with flaxseed oil, and liquid vitamins D3 and B-complex. I completed about 4-5 rounds of Botox for my migraines. I had not realized they were helping until I had to stop them. My migraines got worse. I am considering trying again in the future.
NOW, 30 lbs heavier, due to inability to walk/stand for more than a few minutes, I am at my lowest point, health-wise, but I am more optimistic than I have been in my whole life.
In January 2014, I received a clinical diagnosis of Lyme Disease due to my very lengthy history of wild and wacky symptoms that, until now, no other doctor (I stopped counting at 43) has been able to pinpoint a cause/explanation. I began a regimen of an oral antibiotic (ABX), probiotics, anti-fungal, and an internal herbal and external detox protocol right away.
I was instructed by my LLMD to start my antibiotic immediately, and to have my blood drawn on day 10-12 for a proper Lyme and Co-infection test to be run. This is what is known as a provocation test. Meaning, the ABX should start working their magic and get the bugs ticked-off (forgive me, I couldn't resist) enough to start moving so they come out from hiding deep inside my muscles, joints, and (hopefully) brain.
From my understanding, most people with seronegative Lyme disease, do not have strong enough antibodies to trigger a positive Lyme blood result. Our immune systems have been through the ringer.
Along with the "faulty" generalized and non-specific basic Lyme panel, many people remain undiagnosed or misdiagnosed with something else. MS, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Dysautonomia, Alzheimer's, Dementia, Depression, Bipolar Disorder, etc, beyond etc. THIS WHOLE-HEARTEDLY ANGERS ME.
Because, guess what!
My Lyme results came back. VERY POSITIVE. I am CDC AND Western Blot positive for Borrelia burgdorferi (and co-infections). That's Lyme Disease, folks. And because not one of my previous doctors (or specialists) knew to order the correct test or were willing to think outside the box and consider the vast realm of possibilities, I have Stage III - late disseminated Lyme Disease. Meaning, it has spread throughout every part of my body and has affected my brain. (This is both, terrifying and also a bit of a relief. To finally have a real answer. Something I can work with.)
To that, I can only say, "Oh well." I can only move forward and not focus on where things went mightily wrong, rather, what I can do right now. And right now, I am sharing my story, that is not unlike many very chronically ill peoples' stories, with YOU.
Maybe you'll stumble upon one of them, and continue to learn the disgusting truth about how huge of an epidemic Lyme Disease actually is. And maybe you'll be intrigued enough to do a bit of research and pass on this vital information to anyone who will listen. Maybe, one day we'll start saving lives instead of contributing to the unnecessary suffering that so many are going through.
Anywayyyy,
My LLMDs office has been checking in on me, and on day 34, we decided to discontinue the antibiotic (ABX) due to hearing loss, and quite noticeable increase in POTS (Postural Orthostatic Tachycardia Syndrome) and heart probs. I am very sensitive to many meds.
I go to the LLMD office next week for the remainder of my test results and will be starting a new treatment for my Lyme Disease. In the meantime, I am working diligently on detoxing as best as I can and preparing my body for Operation: Road to Recovery.
TL;DR (Too Long; Didn't Read):
I am ill, very ill.
I know what is wrong with me, finally!
I have a specialist who is on my side.
We have a plan.
I am cautiously and patiently optimistic.
It has taken 25 years to become this ill, I am aware it is going to take quite some time to beat this.
I am grateful to you for reading this, and am more than happy to answer any questions to the best of my abilities or point you in the direction of someone who can.
Oh, these 6 little words, I loathe thee. I almost never know how to respond to this question, or the dreaded, "How are you?!" I'm not sure if this is because I am just so damn awkward, or if I am ashamed or just too slow to think of a proper and honest answer. So, I usually slap on a sugary sweet smile, and instinctively blurt out, "Ohhh, not much." or the automatic, "Good, how are you?!" or even the almost intolerable, "Nothing." or "Fine."
I pride myself on being a kind, genuine, respectable , and mostly classy person. But above all, honest. So, you can probably see why the aforementioned automatic responses are duly frowned upon in my book, yet I continue to lie through my teeth when asked these uncomfortable and often too personal questions.
Here I am asking myself ,"Why?". Why do I lie to strangers at the checkout? Why do I lie to acquaintances? Why do I lie to nearly every person that I come into contact with who blurbs out these oh-so-nonchalant greetings?
I've come to these conclusions:
I am probably too "out of it" to respond correctly or honestly. It's pretty sad when *thinking* takes too much energy.
I probably don't feel comfortable enough with the askee to divulge sensitive information such as, "Oh, you know...just the usual, explosive diarrhea with a case of the giggles...An average Tuesday evening in SickVille." or "My uterus is attacking me from the inside, out!"
What about when "Nothing." really is the truth? I tend to like to appear much less pathetic than I actually am. It seems to ease people's uncomfortable thoughts and feelings when learning the extent of my so-called Life. So, I put on a hefty smile and think of something appropriate to share. (Mind you, this does not happen often, I usually stick to the least complicated method of conversation.) This is all happening subconsciously and within seconds of the dreaded Question. So, if you ever receive an automated response, don't be offended, it's not that I don't want to share precious information with you, I probably can't or don't know how at the moment.
Then, there are the situations when someone genuinely cares and wants to know how/what I've been doing. These are almost as difficult, because oftentimes, I don't know how honest I should be. Because *of course* I am thinking about the *other person* and don't want to worry them if I'm not doing well. (I'm working on being more honest and open about my thoughts and feelings and learning to ask for help-in 2014.)
I know I need to let people in, but dammit, abandonment sucks! I've been trying the whole, "I am me, and if you don't like, or can't handle my shit, then you don't deserve me." attitude. It is absolutely logical, and sometimes it helps to snap me back into gear when I'm feeling very inwardly awkward, but the fact is, I've been isolated from social events (Read: society) for so long that I've changed. I used to be a friggin social butterfly!
I've forgotten how to just be. How to interact with people in a natural way. How to have a damn conversation with someone. Call it Socially Retarded, Social Anxiety, Socially Awkward, or just plain Lame; that's me. I'm overly stimulated by outside forces and inwardly damaged by physical and neurological disabilities. Cool!
But, I am me! And, I'm learning to adapt.
Please feel free to share your thoughts, feelings, and experiences!
Today was the day. December 18. 2013. The day my life was going to change. Or so I thought. I've had an appointment scheduled with a LLMD for about 4 months now.
This led to that, and complications with insurance, and delays with current doctors, loose ends needing tied up- all of this forced me to have to wait to see the specialist. A moment I have been dreaming about, yes, seriously, for probably about my whole life.
The way I think of it is this: I've waited this long for answers, I can absolutely survive another month. Who knows, there might be someone who needed this appointment more than I do, and it might just be their Holiday miracle. It also gives me more time to detox my poor lil ol' body.
Since I can remember, I have always had something wrong with my body. I was always sick. Something *always* hurt. It wasn't always the same thing, almost like my body was on rotation, which was almost somehow worse. Having to explain that while, yesterday I could not use my right wrist at all, today, however it is my left wrist that is unbearably painful. Swap out "wrist" with any imaginable body part, and on a daily basis, this is how the story goes.
Pain is really only a part of my problems. I am afflicted with a terrible brain, that supposedly checks out just fine. Wanna hear a little secret? Well, the things that are often unseen are sometimes the most fun, and ironically, present the most problems. *ahem*
My autonomic nervous system (the thermostat of the body, that controls every body function that you're unaware of) is WHACKED.
Imagine, if you will, a vehicle that is stuck in 1st gear while going up a steep incline. You let off the accelerator, while simultaneously feathering the clutch, but something is not right. Something is out of sync and you stall out. You start to roll backwards at an incredibly frightening speed. You start to panic, your heart is pounding out of your chest, while racing at speeds faster than your body is going. You're quickly losing altitude, and gaining even more speed, but in the wrong direction! You start sweating. Nausea kicks in at the most inopportune moment. You think, well, "I'll just hit the accelerator even more..that'll help!" It doesn't. It makes it worse. You're already past the point of rescue. So. You slam on the brakes. It's the only option until you'll eventually and inevitably crash and burn. Then, you have to begin again. Very, very slowly. Even slower than you had begun the last time, because your engine is damaged and you must take care of it until it's on the mend. In 1st gear, again, you try to climb the mountain that is life. Eventually, you may make it to the top of an incline, a plateau, where you're unable to continue ahead, less you free-fall into the abyss. This. This, is your time to acknowledge how far you've come. To assess the damages. To appreciate what is around you. Take it all in, for you do not know if you will make it up the next climb. Take the necessary rest, and prepare for the next part of the journey of Operation: Road to Recovery.
I will not be “participating in Christmas”. I believe in sharing love year-round, sans presents.
I would much prefer to share small acts of random kindness with strangers who might feel so inclined to do the same for others.
In order for me to be able to interact with live people, it is essential to be able to leave the house/bed/recliner. After months of dreading, and toying with the idea…
I am, however, asking Santa for a wheelchair…or the ability to not need one. Or a new body, whichever comes first. ;) Aside from horrible, unbearable joint and muscle pain causing waxing and waning mobility issues, standing is proving to be quite difficult without nearly passing out. I’ve got plenty of issues, and I am working on them, but it proves to be quite difficult from the inside of my home. I don’t want to be “that girl” but I will be, if it helps me to regain some sort of independence and normalcy to the life that I yearn to live!
I ask not, for your pity, sympathy, or judgement, but your love, understanding, and support. –Not only for myself, but for others who may be in similar situations who may not *look* sick. Our bodies are a strange and wonderful thing that we may never fully understand, but until then, let us love them anyway –despite so-called flaws. =)
Peace, Love, and Veggies to you all this very merry holiday season!
Things have been pretty up in the air as of recent. A lot has happened, yet also a lot of nothing has happened. I feel as though my life is flying by me, while I'm standing painfully still.
My little brain has been dedicated to research and development for the past few years. (Of my body.)
I can't believe it's almost 2 years since I moved to California. That boggles my ever living soul. We are nearing our 2nd lump of holidays "on our own". Things have been far from easy, and are only going to get more difficult within the next month or so.
In a month from now I will have seen an LLMD (Lyme Literate MD) who can hopefully help put together the pieces of the crazy puzzle that is my life.
I have suspected Lyme Disease ever since I noticed a bullseye rash on my wrist in the fall of 2009. I was disregarded, brushed aside and left on my own to wither away. And I did. For a few years, until I decided to take things into my own hands.
I decided I had to step up and become my own health advocate. Since no one else could, or would. Starting with the "simple" act of eating. I'm now consciously aware of what goes into my mouth and how it will affect me, positively or negatively. I adjust accordingly. When that didn't "work", I began digging a bit deeper. The wheels were spinning and with lack of improvement, sometimes comes the ability to slow down and look back. To reconsider possibilities, and to slowly put pieces together.
Lyme Disease is one of those things you hear about and think, "well...that couldn't be me" and you go on with your life. Until you take a turn for the worse.
Most people know the "basics" of Lyme Disease, that it is something you "catch" from a tick, and is usually spread by deer in "deeply wooded areas". While that is semi-true, it is not the whole truth. Lyme Disease is the single most complex ailment I have yet to come across in my Research and Development stage.
The more I learn about Lyme Disease, the more I am flabbergasted by; not only the absolute ignorance of the layperson, but doctors as well, and the lack of credibility in our medical communities. Almost to the point that one might begin to think "They" (The Almighty, Narrow-minded They) want people to remain sick, suffering, miserable human beings, because They fail to remove their heads from their rear ends long enough to listen to people who care. People who want to make a difference, by adjusting their minds to consider all of the possibilities.
There *is* treatment available. Lots of options, all of which are much more complex than the typical "21 days of doxy, and you're good to go!" This is a raging misconception, and we must ALL be educated. Starting with healthy people. http://lymedisease.org/ is a good place to start!
I'm hoping I won't have to try them all, but at least I'm reassured I won't run out of treatment options because I won't stop fighting. Which is why I am planning on documenting my Lyme Journey. Not only for others, but also so I know where I'm at. I can look back and see how bad I was at certain times and also to track progress! *Fingers crossed!* I have a feeling video updates might be coming sometime soon, as my brain is just not that into the whole computer and typing while looking at the blinding screen thing.
So, bare with me here. I'm sure someone will read this......someday. And that's all that matters, if even only myself in the future. =)
