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.
Fast forward 3 months to when I began the process of acquiring a wheelchair...
And now 4 months later, I am still without a chair. I am assured that the wheels are in motion, (no pun intended) and that my chair should be approved and delivered sometime within the next millennia. No, seriously.
I pride myself for being a patient, understanding, and logical person, but this is getting to be quite ridiculous. I fear that I am now doing significant damage to my body by forcing myself to stand and walk the very little amount that I do. But hey, what the heck else am I supposed to do? I have no choice but to sit on my ass and wait. I cannot count the times we've said, "if only I had my chair, I could do this, or go there." The reason it's taking so long is that because my body is not strong enough to use a standard drug-store/hospital wheelchair, my chair must be custom built to my body. It needs to be ultra light, due to the weakness I have in my hands, wrists, and shoulders, as well as being light enough for me to maneuver without over exerting myself and passing out. These types of chairs are very expensive and require a tortuous amount of paperwork to be approved by insurance.
In the meantime, I've been totally worn out. In April, I had a Power Port surgically implanted under the skin in my chest that is attached to a catheter that is then threaded through a major vein that leads to my heart. This is pretty amazing. It allows me to administer IV medications without having to go to the emergency room to get an IV peripherally inserted in my arm.
The surgery went unbelievably well. I was under conscious sedation and was talking to the surgeon while she was stitching me up! I had almost no pain at all after the surgery, which was surprising. I am however having a heck of a time with itching from the dressings. I must be allergic to the adhesives. I've tried 3 different kinds.
My doctor coordinated with a home health agency to have a nurse come to change my needle and dressings every 7 days. I also have an occupational therapist who comes to help me do some light strength-building exercises for my hands and some breathing techniques and I am just starting to learn some basic chair yoga!! I did have a physical therapist come but unfortunately the exercises that he had me do made my legs and joints (excruciatingly) worse, so I'm holding off on that for now.
I completed one month of IV antibiotic infusions twice daily while simultaneously doing IV hydration. I then switched to an intramuscular injection of antibiotics and have also added more supplements and herbs (none of which are covered by insurance) to my treatment plan.
I've invested in a phase-change cooling vest, with help from a generous donation. I cannot even describe the world of a difference the vest makes on a 113°F day when I have to leave the house to go to the doctors. My only complaint is that I didn't get one many years ago! (More about my vest later!)
I started doing castor oil packs sporadically, with hope of easing the stabbing stomach/intestinal/liver/gallbladder? pains. I've heard miraculous stories about castor oil packs, it was something relatively inexpensive that I could try. I would like to do them more often to see if I get any benefits.
The next "big" thing I am going to try is coffee enemas. I can't afford not to try them! I've been doing a bunch of research and they really seem to help a lot of different things. Of course, I'm apprehensive to try this because of how sensitive my body is with any sort of caffeine, so I am going to ask my doctor at my next appointment in a couple weeks if this is something that would be safe for me to try. I also want to make sure that I know exactly what I'm doing before I go ahead and stick something up my butt. (I'm sure there will be a whole separate post on coffee enemas in the future.)
I'd love to hear what has made the most difference in your health and/or quality of life or piece of mind. 💚
My lack of updates are surely not due to uneventful happenings. Truth is, a lot is going on, also a whole lot of nothing is happening.
I've been stuck in a writing/filming/creativity/anything except for sleeping and Netflix rut. I haven't been able to form any thoughts for an update post or video and thusly felt like it was somehow better to wait until I could update properly.
I've come to the conclusion that that is bullshit and I am just making excuses for myself.
So here I am, going to try to write or film whenever the mood strikes. Whenever my brain conjures up some worthwhile content, no matter how random, or crappy it may be. My life is far from perfect, why should my content depict otherwise? 😜
Nothing like a nice long ambulance ride to the ER with a hot paramedic who has the flu.
Home safe in bed now. I had a very bad vasovagal attack this morning that was exacerbated by my Lyme Disease and Babesia flare, along with the worst abdominal pain I've ever experienced.
C'mon stupid body! All we needed was to get thru the weekend to make it to Monday's appointment with the surgeon who is putting in my chest port. After that I will be able to have the necessary medications and hydration intravenously that should have been started 15-20 years ago.
While today was a definite speed bump, it puts things into perspective and I am even more aware of when "bad" is "too bad". Life is a learning path and I'm soaking it all in.
While yes, today royally sucked, I'm not done fighting. This is just the beginning of the rest of my life!
I got a nice change of scenery and met some wonderfully beautiful nurses, doctors and technicians. Overall, I'd say this was a rather productive Saturday.
What did you do today?
PS have you ever had 2 IVs (tried to be) inserted while going over speed bumps? Poor guy couldn't find my ittybitty shrunken veins.
I'd like to go into more detail later for documentation purposes, but I am just too weak and fatigued to right now.
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!
