Possible New Diagnosis..

Dystonia is not an enchanted land. It’s a movement disorder.

I had been to my neurologist about my having no balance and not being able to walk due to the jerking in my knees.. She wanted me to re-start gabapentin (I’ve never noticed it helping like that before..) and physical therapy. That’s literally all she was going to do.. I knew there was more too it.

Since I do have mold toxicity I decided to go to a functional neurologist/chiropractor. She gave me the longest neural exam I’ve ever had! She did tests and made symptoms happen I didn’t even know about. There have been jerks and twitches over my entire body, it’s affected my quality of life, it’s affected every part of my life. I just thought I was too tuned into my body. It turns out I might not be crazy.

My brain has a disorder that mixes the signals and pathways in my brain. When you move your index finger, only that one part of your brain should light up.
(This is sad I know but it’s a good explanation) Drs used monkeys to realize we can fix the mixed signals and retrain the brain – The index finger of the monkey is removed. Eventually when the thumb or other finger moving will light up the part of the brain the index finger used to signal. Retraining the brain to not need the missing finger. When the finger is re-attached eventually it starts lighting up it’s own section again. My brain is constantly reacting which causes my body to constantly react. When I move my finger other places in my brain light up. Writing a letter (which is pretty much impossible) causes my legs to contract for example. I always feel like I’m falling, my brain doesn’t know where my feet are or really where my body is in terms of the ground. This is why I get vertigo when i’m walking and have no balance due to extra pressure in my brain caused by the inflammation in my brain and the dystonia impact.

Right now as I’m typing this there is a twitch moving up and down my legs and they are clenched. My muscles are constantly clenching when they shouldn’t be. This causes exhaustion, pain, brain fog, inability to walk unassisted, inability to get a sentence out, stuttering, Blepharospasm (uncontrollable blinking as the muscles around my eyes contract), slow eye tracking, stuttering in fine motor skills, and jerking is now in my arms, face, neck, abdomen, and head in addition to my legs. The leg jerking alone was debilitating and has caused me to start using a power chair as i’m too weak to push myself. The jerking and movements in the other parts of my body are life altering.. at this time I can still drive short distances but at night my eyes get affected by the lights and extra blinking starts which makes me nervous which makes my arms start to jerk.. I’m really struggling and have to wait until Nov 10 to go to a movement disorder center to make my diagnosis official and hopefully start some meds to control my body.

I’m trying to decide whether it’s time to go to the Cleveland Clinic.. has anyone who read this far gone to that clinic? I’ve also been told to go to Mayo. But I don’t know how to make that decision.. I wish I had gone to this neuro chiropractor Dr. Brindisi months ago.. but I thought I was taking a break but things got too bad again. I planned to travel on thanksgiving and attend a show of my favorite band Our Last Night but now i’m worried the movement disorder center may not give me help in time.. it’s hard to balance taking care of my psyche and having fun with treatment..

I’ll post about the mold soon, it’s something i’m still unsure about. If you have had experience with mold please check back. Mold is so confusing.

A Much Needed Update – I’m Back!

Some of you may have noticed I took a REALLY long break from this blog. I started this when I was 25 and heading to treatment at the Envita Center in Arizona for Lyme Disease. I’m not very good at keeping up with things like this but I really needed and wanted to share my story especially since I was receiving such treatment. (i’ll be making a more medical update soon)
I need a way to express what goes on in my head but I also want to help others in situations like mine. I want my mistakes, misdiagnosis, drug issues, questions, epiphanies, tips, and life experiences as a disabled person to help others.

It’s a lot easier for me to really care about something like this if I feel like I’m helping others too. When I was first doing this blog I actually connected with an incredible girl that actually turned into a pen pall for awhile. I don’t know where she is now, but if you read this, leave a comment! I loved our emailing.

I just realized my last update was in 2016! I also realized that I haven’t written a post to really go into the treatment and the effects of my time at Envita. I will be making a post to really talk about what I think that treatment did for me, but also the unfortunate trauma that comes with intense treatment. While I feel like they got me out of the wheelchair for a year or so, I still get triggered as if I have PTSD from those 5 months.

Since my last update, I had about a year where I would say I was functioning at about 50% most days. I was even able to walk more without any assistance besides touching a wall here and there. I rode my bike, went on the boat, went to Washington state to visit a friend I made at Envita, and didn’t use my wheel chair for almost 2 years! I’ve seen Kesha 6 times, JoJo 3, Nina Nesbitt 2, Lindsey Stirling 3, Rachel Platten 3, Our Last Night (my new favorite band as of 2 years ago) 2, Jesse McCartney 2, LoLo 1(finally!), Idina Menzel, and others! I traveled to other states to some of these and met new and old friends, flew by myself, HUGGED KESHA, and had a couple (really) bad relationships(lol). I’ve had some really amazing moments like getting to watch OLN from backstage, hugging and talking to Kesha, getting to talk to and hug Nina Nesbitt, Lindsey Stirling and Rachel Platten, meeting new friends at the shows who I still talk to, having a blast dancing along to Jesse McCartney (I did get worn out lol), going to so many beautiful places in Washington and Oregon state, seeing some places where Twilight was filmed in Washington, went to NYC, went to long island pride, went to the lake for a week with my family and actually managed to have an okay time, I got to visit my grandmother before she stopped being able to recognize us, went to my 10 year high school reunion, Nina Nesbitt singing part of one of her songs to me because we were supposed to crouch but I was sitting on my walker(lol!), we adopted an adorable puppy named Chiquita from Puerto Rico after the hurricane, 3 of my favorite cousins graduated from high school and there were some other just good days. I felt like I had a bunch of great days but also a bunch of really bad ones.

It was as if literally something could not happen without a bad or worse reaction. After two Kesha shows in one week (a dream!) I got both strains of the flu at the same time, a UTI turned into a kidney infection within a day a few weeks after I got over the flu viruses, its been shown that I have brian inflammation, it doesn’t take much for my virus numbers jump very high very frequently, a trip including a flight to Philly to se Kesha lead to collitis and hemmerhoid surgery and I agreed to stick to shows closer to home, I missed as many concerts as I attended due to flares and muggle illnesses I got, I lost one of my longtime best friends when she told me we are in different places but i’ll always be considered a friend.. she then said horrible things about how her life is just working and mine isn’t (basically), multiple friends dumped me calling me toxic and too negative, Lindsey Stirlings dad whom I had met at Envita passed away, my dog had to be put down while I was on a trip to see JoJo and Kesha with my dad, after a trip with a Rachel Platten fan group I was treated very poorly for a misunderstanding involving my medicinal marijuana and that I couldn’t keep up, I had 4 relationships all that ended in them leaving because of my issues, over the past year my health has been declining, over the past 6 months I’ve lost 40lbs unintentionally and at first I liked it, at the end of march this year I entered a state of disassociation I had never felt before, I have felt like my dreams are literally an alternate universe, I fall asleep in pain and wake up in pain that’s almost intolerable, over the past 4 months my mental health has disappeared, my physical health is in the hole and I’m mostly bedridden, for awhile I didn’t even want to leave my room, now that I can’t I do want to but it’s so hot it makes me too ill.

I’ll be making a mold update post to really talk about this problem because it’s a lot. And a lot of unknown. In the beginning of the year I was having neurological episodes and my movement disorder was getting worse. I took a urine toxicity test and there were large amounts of four different types of mold (no black mold). Our house also tested positive for aspergillus in the air and the dust. We had to move and get rid of most of our stuff. It was a horrible time for me and to be honest I’m still getting used to things. The move was hard on me is an understatement. I started having extreme mental and emotional breakdowns everytime I left the house and eventually I would have panic attacks just from leaving my room.
Shortly after the mold was discovered I started charcoal and my doctor changed to a membership program that my parents and I couldn’t afford. I’ll be making a Doctor Critique post on Sonia Rappaport because she did a lot of good but ultimately left me with nothing. She kind of made a plan for me but it was contingent on getting mold treatment elsewhere which I have not been able to find. Weeks after that my psychiatrist that I had seen for years up and moved without even a heads up. This left me in the hands of the much older and slightly out of it main Dr there and yes he gave me the drugs I asked for to handle my intense breakdowns and panic attacks which is what I needed most but he will not be able to help me get to a better place.

Right now I’m just using band-aids to survive. It’s no way to live. But at least I’m alive right? I’ve just never felt so alone and dead in my life.

Update from Arizona!

My mom and I living it up on the way to Arizona!
The exclamation point may have been a bit much because so far things have been moving but not super fast and i’m still not super positive yet.
I’ve been very foggy so it’s been really hard for me to connect with Dr. Ortle because he uses a lot of science terms that I cannot remember.

But I do understand that certain anti depressants and anxiety meds may not work on me because of the way i’m wired. And Dan is GREAT! Hes so nice and really welcoming (his words are easier to understand lol). Although I wouldn’t say I’m comfortable yet.. which of course is expected.

But it is beautiful; absolutely stunning here. I can’t get enough of the mountains and cactus! And the weather?! Gorgeous! A little cooler than we expected but honestly that’s the way i like it 🙂

This is a picture of my very first Arizona sunset –

SO here is my upcoming schedule, Monday I get my first ketamine treatment for pain; Tuesday I start antibiotics on a regular IV; Thursday I get my port.

That’s a busy week, I’ll check in so you know you i’ve lived!

*Gentle Hugs*

Being Wheelchair Bound

I woke up one morning and my knees stopped working. I can’t walk without holding on to something and my knees bounce and jerk like I’m trying to dance walk. Trust me I’m not. I mean COME ON! I was already sick did I really need this added to the list??

As you may have guessed this makes it hard to get around and increases my pain immensely! So I had to make a choice, get a wheelchair or never leave the bed. (Now don’t get me wrong, I am still mostly bed-bound)

Leaving the house is already close to impossible dealing with all the symptoms that I have too.. but now my invisible illness had become visible.

This was a scary thing to deal with, but I chose to keep living as much as possible. I don’t always have the best attitude but I absolutely go crazy if I can’t leave the house for days.

It’s also really weird to use a wheelchair when you can still walk a little bit. You find yourself wondering what people think when you move your legs, when you stand up to reach something on a shelf at the grocery store..

But after some time you start to forget about that. Its hard but eventually you realize that they have no idea what you go through every day. You fight more than they realize and hell, they may be fighting too!

If you  need to use a wheelchair or a walker in order to leave the house, do it. Don’t think twice, just do it.

Now my parent’s take me on “rides”, I can go to the park, and I don’t have to worry about there being a wheelchair or cart to rent/borrow where ever I go!

Happy Rolling!

Everyone has a Story

Once Upon a Time

A girl got sick for 7 years before being diagnosed with Lyme Disease, Babesia, and Bartonella infections.

I got a migraine that lasted for 1 & 1/2 years during my senior year of highschool. I missed alot of school but eventually it moved to just chronic migraines and I was able to go to College.
After 2 years of college, I started to get flares of illness – fever, headache, nausea, vomiting, fatigue and anxiety. For awhile I just brushed it off, getting diagnosed with Bi Polar Depression and Anxiety disorder in the process.
I thought I was just having troubles with my mental state and my medications.. then things got worse.

My legs started to shake going downstairs which soon became noticeable, especially if there were no hand rails. And my dizziness began, I couldn’t go up stairs without the world spinning around me. Everything was falling apart and I had no idea why.. I stayed in bed alot, had to go home early from parties, and frequently missed out on outings with friends.
The only way I managed to pass classes was literally by crying to my professors.. professional right??

Then my symptoms came to a head about 2 years ago, I had a seizure at work and that finally got me some attention!
I started going to dr after dr with a going total of 25 (which happens to be my age… hah).
I actually went to body talk and was told horrible stories about the poor souls of raped and murdered girls that clung to my soul… um help?
Finally I had to drop out of school, I just couldn’t learn anymore.. it was like I was trapped in a clear jello with no way of pushing through to the words.
So i decided to focus only on getting better, I rested, went to different doctors and got many diagnoses.
All of which I’m sure I have in some way or another.. you know how confusing everything is.. mainly Fibromyalgia, ME/CFS, POTS and Dysautonomia. Although I’ve been told I have those AND Lyme and co infections.. *Head Blown* but nobody told me I had a chance to get better, for a while i was hopeless feeling as though my life was over forever.. that there would be nothing but pain, sleepless nights, anxiety, loneliness etc.. thats when my friends began to disappear.. I was told “Your not that sick” “Just be positive and do something!” and “Just get more excercise!” oh how fun that was, watching my shallow world of fake friends crash around me. At the time, I didn’t realize it was for the better.

But I just kept getting sicker and went from home bound to bedridden. I had a supportive, live in boyfriend but while he was at work, my health suffered. It was more than he could handle as he ended up dumping me because I couldn’t work, visit him, do anything, or have sex.. which of course are the building blocks of relationships..
I had to move in with my parents.. at 25 I had to leave the life I had for years and come back to my childhood. My parents take care of me and help me with everything.. its humbling, horrible, and sometimes fun 🙂
I didn’t see that at first.. but of course I kept getting sicker..
We tried everything, starting with a sort of natural doctor who also used regular drugs but put me on a super strict diet and handfulls of supplements that made me feel like I wasn’t just dying, already dead but stuck feeling everything.. promises were made and broken, time lines thrown out, doctors changing right and left.. the year was a blur.

Finally my parents and I found a doctor to get the right  tests for Lyme and co infections through Galaxy and Igenex NOT labcorp!  Then my Lyme came back indeterminate (sometimes means positive) Bartonella had high antibodies, and Babesia was active in my blood smear! FINALLY SOME ANSWERS!!!!!!!! If you don’t know what that feels like I hope you do very soon 🙂
Those results gave me some hope, I know this is going to be hard but I have some hope that I may get better. Its just going to be a long hard road..

if you feel like your going to die every day, you may have a chronic illness..

So here I am on the Lyme Disease path after so many years and let me tell you this path is NO FUN!
Thus far I have done 3 months on Doxy, Coartum, Azithrimicin, and Tinidazole those were too hard on me, i tried refampin next and actually noticed a difference! Until my stomach started to feel like it wanted to rip itself from my body.
So I’ve been taking a break waiting to get IV abx set up which is getting delayed by my normal lyme doc due to stupid laws down here in North Carolina.
But I will try to keep it positive even if I have to vent sometimes 🙂

Thank you so much for taking the time to read my story!