Why I'm ecstatic about my wheelchair

"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. 

✌️💚🎳

Peace, Love, and Balls

History and Lyme Journey Update with Video

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:

1. Had multiple vials of blood extracted, on multiple days, from my already poor, dehydrated body;
2. 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;
3. 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);
4. Had an EKG prior to starting treatment.
5. Seen 2, scratch that, 3 other doctors (2 primary care MDs and 1 psychologist, who is awesome, might I add)...
6. I am still in the process of getting my wheelchair. I could never have imagined how difficult it would be.
7. 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.
8. 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:

1. I had an Erythema Migrans (EM) rash (bulls-eye rash) in Sept. 2009,
2. I have been very symptomatic since childhood,
3. I have tested, on my insistence, (negative) for Lyme on at least 3 separate occasions. (2007, 2010, 2013-CSF lumbar puncture).
4. 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.
5. 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.
• I am a warrior.]

I can't believe I would ever be wheelchair shopping

A few months ago, when walking/standing got to be unbearable/ very limited, I reluctantly (and I mean that...it took me a while through tears to talk to my mom about a wheelchair) went to my (very narrow minded) rheumatologist about how painful it is to walk and stand. It takes me a bit to cry in front of people, doctors included, but she brought me to tears. She turned it around on me and made it seem like I was giving up and that it would make things worse by relying on it? I understand it to a point, but I. Am. Miserable. 

She then brushed me off and shoved me on my way with a RX for vicodin. (I have never taken narcotics before and stressed through tears that I did not want them.) I begged for her help and she denied me of any compassion or assistance. SHE gave up. I did not. I am beginning a new journey and if I'm ever going to make it out alive and healthy, I need to be able to get out of my house and bed. Not for fun. For the necessities. Appointments, grocery shopping, and getting the mail. WOOT!

This won't be permanent for me, I'm determined to that. But sometimes we all need a little help, right? (Even if for some reason it is long-term or permanent, that wouldn't be so bad. I could do more than I can right now, and at least I'd be able to gain some sort of independence!) Anyone seen the Sundance series called Push Girls? I highly recommend it for a glimpse into a wheeled life. It's on Netflix, and has completely changed the way I view wheeled individuals. 

My QUESTION to you is do you use a chair, and/or can you recommend a fairly inexpensive, reliable, comfortable (and possibly cute? I'm in my 20s, and would rather try to get some enjoyment out of life's little obstacles-or I can decorate it.) chair that I can purchase online? I am a frequent Amazonian and have been browsing, but I feel I need to just. do. it. And soon. 

If you were able to read this, I thank you and applaud you. I sincerely hope you can't give me any advice because I hope you aren't in this situation. But I thought I'd ask! 

Take care of yourselves! =)