I’ve not written a blog for close to 2 years, due to some comments I had gotten stuck on a loop in my brain during mental health month the other year regarding my one blog publication. The odd thing is, my therapist loved it. He had said he was proud of me for bringing frankness to the public regarding mental health & suicide. Considering I was on this county’s suicide task force about 15 years ago, I thought it was appropriate, but others did not. So that’s where I’ve been. Kinda stuck in a loop. And while the year of 2020 smells like a Job Johnny set on fire after it’s been tarred & feathered, maybe rolled in some really, really nasty decomposing items…it has been a refreshing year for me since July 2nd when a whole slew of new & FINALLY! correct diagnoses have been attached to my very now rare genetically mutated body. I really wish my X-Woman powers were more along the lines of Wonder Woman. Not someone who can twist themselves up into a pretzel & jump to great conclusions when I see micro facial movements from people I am talking to. My other superpowers? Walking into walls & falling down. These things will be addressed in future blogs. Some, like my June 2008 stage injury in my lyrical solo have been addressed & now we know why these things have happened to me.
So about 15 years ago, maybe longer, I started noticing similarities to myself & people that said they were High Functioning Autistics aka Asperger’s. I’ve been exploring it ever since then more off than on, until the past 2-3 years. In 2013 I met Patrick, my friend, now my chiropractor & employer at his now wife’s (more) holistic practice. He became the 4th main practitioner there with a few associates for various holistic things, including myself. Patrick & Becky were eventually married a few years back. Becky & I have been friends since 2003. She had eventually pursued a career as a Social Worker. Sometimes, I wish she wasn’t my very close friend so that she could be my therapist! How silly is that! (Talk about some messed up boundaries I have rolling around in this brain of mine.) Brains. Back on track. When the practice was still in the small PA town I had the pleasure of living in from 1993-94 for going to the university there for Marine Biology & I was still an actively working Peer Specialist, I took Patrick’s CE seminar on Autism. It. Was. Amazing. I had read his 1st book. Awesome. (2nd book still on the “to read” list.) It was meeting him & kinda poking around without really trying to alert anyone of my suspicions that made me start questioning the Autism Spectrum symptoms more & more to my own. Patrick was diagnosed later in life, too – yet younger than my 45 years. He has penned some contributions to some books on Autism along with Temple Grandin & other people who are on the Spectrum & are contributing greatly to society. I will get into this later.
Enter my former therapist Jim in 2015, whose 1 Ph.D. is in anxiety & creativity (I think) & the 2nd Ph.D. is something to do with autism (I think). So 5 years ago I was diagnosed with Autistic Personality Trait. Part of the reasoning is that my memory is so expansive (despite working through the brain fog associated with migraines & chronic pain associated with some very recent genetic disorders). I remember minute meticulous detail. I remember back to when my maternal grandfather was sharing his cheese curls with me on a chair I sat on up until my grandmother had to go into a long-term care facility up in Coudersport in the late 1990s. (My mom’s side is from Susquehanna & Potter Co. areas – very close to the NY border in the USA.) So the thing you don’t know about my maternal grandfather is that he died about a week or so after I turned 2 – in 1976. Almost 44 years ago. Jim couldn’t believe the meticulous detail I could recall. The thing about APT is that I believe it was written out of the current DSM-5, I am unsure. I am not sure if I care or not. But it gave me the green light to start gently pushing for answers of “why do I do this?”
So Jim & I talked about this off & on for the past few years. In the past year, I started researching it even more. Due to an incorrect billing debacle starting in June & through much BS of that mental health place’s new & out-of-state owners not knowing how to bill plus the nonsense (nee trauma) the staff put me through, I was not allowed to see Jim any longer. Being a peer specialist, albeit retired, I knew what they were doing was wrong. Financially & Ethically. It was a mess they made for me & every other person they didn’t know how to bill for. The reason why it was so bad for me was that I decided to take a stand & tell them outright that what they were doing to us was wrong. I used my voice to stand up for others who fell silent & just could not or did not want to question people they thought cared about their mental health. So, enter into 2 brandy-new providers. Dr. K. the psychologist & Stacey the MSW.
Dr. K is so very nice! Without any prodding, he started asking questions in our 1st session back at the end of August or the beginning of September that nobody else has really ever asked before. So with no charts forwarded, I really got a fresh start! He finally diagnosed me with Asperger’s. Stacey is really nice. The problem is that both are so busy, that they can only see me every other week – if that. And right now with at least 25 new diagnoses since July 2, 2020, I need support more than ever. Jim was seeing me twice a week for a few years, due to my ever-evolving plan of lifestyle changes & weaning off all daily prescriptions that I started to implement in August 2013. In June 2020, this facility I was going to since 2014 put me with this condescending goofball who made me feel like I was talking to my mother. A constant battle to try & prove I am not stupid. He seemed appalled over the phone to hear I was not on any psych meds. (See previous blogs for what happened when I was over medicated over 10 years ago.) Now we find out that I may, indeed, have had medication-induced bipolar disorder. I never had a manic episode in my life until I was on psych meds (2000-2019). I have not had one since. I do not miss them. I am very appreciative of my current motivation to get things done. My expectations are great, as I am trying to catch up on the past 20 years of an as-directed prescription-taking semi-comatose state. The problem is, I have really had some hard-hitting physical health issues that have finally been getting diagnosed properly & not in the garbage pail diagnosis of fibromyalgia – but yet, cruising right alongside the fibro symptoms – even in tandem with them. YES! I do indeed have fibro! The problem with fibro is that no matter who goes to see whatever doctor, it would appear to me, after having that diagnosis for about 20 years, is that if the doctor doesn’t know why you have certain symptoms, it goes into the big ol’ garbage pail of fibromyalgia. Then you don’t know if the said doctor(s) really believe your symptoms or if they are really writing down “all in their head & needs psych meds.” This will be addressed in a separate blog about the Asshat I was forced to see in December 2019 when my rheumatology specialist gave up on me last August & told me “You are so complicated. Too complicated. Well, you are!” Nice. Thanks for just negating the past 15-year relationship I had with you when I thought you believed me, had my best interest at heart, & were in my corner.
So anywho – this is getting totally sidetracked since I have close to 2 years to catch my readers up on. Some very close friends (who know a lot or a bit, depending on the consistency of contact) & some readers, I see are on continents other than the USA, where I live. So here’s a BIG, BIG, BIG diagnosis, as of July 2, 2020, which I will explain that 7-year drama to get to the geneticist in another future blog: I have Hypermobile Ehlers-Danlos Syndrome/Disease – Type 3. (hEDS for short). I have new-to-the-world-gene catalog mutations in my one Type 1 collagen gene labeled COL 1A1, just told to me on August 6, 2020. My reaction? My feelings about being totally different than everyone else on the planet were right all along. From the time I was interacting with humans outside my family. That’s not correct. From the time I could think & feel different than others – I did. So young. Very young. Toddler young.
Back to Asperger’s. So with the confirmation of what I suspected all along – even before I had heard of Asperger’s – I feel relieved. Still different, awkward, a loner – a rebel, if you will. (Thanks Pee-Wee Herman for that line!) So I have been telling people on a need-to-know basis. When I went to my latest first PT session for this year for my shoulders, knees, & core work b/c of the odd spine & pelvis rare conditions 4 days ago, the PT said this to me, “Do they have you on any medication for the Asperger’s?” After attempting to control my “WTF” face she could see over the top of my mask we are all forced to wear this year, I said, “No. Why?” PT: “Oh, medications can work miracles for those suffering from Asperger’s.” Again – here comes the WTF face & OMG…did she actually say SUFFERING? SUFFERING? Um, hey lady, I just came off an almost 2-decade long over-medicated state which made me not feel or think properly. Not to mention that in the 1st part of my relationship with my 2nd husband (2002-2009/10 – another story in itself), I absolutely CAN NOT recall some memories. I’ll say “Oh, hey, we never saw that movie.” Him: “Um…yeah…we did…at the drive-in.” So is THAT the miracle? to remain quiet, compliant, doped up out of your mind, not feeling or thinking? W.T.ACTUAL.F.
As soon as I got home, I told my husband, who was just waking up, since he’s a third-shifter, he has to sleep sometime, so usually, he sleeps away people’s first shift hours. He said, “OMG, can I go back to sleep now?” I was hotter than a cat on a hot tin roof in the Dog Days of August on the Equator. I messaged my 3 closest friends immediately. Becky responded 1st – I said, Yeah, I bet she even thinks Autism Speaks is a great charity & Lights it up Blue every freaking April. Something, once I met Patrick, I learned to loath. They do not speak for him & they do not speak for me. A few hours later I noticed that the Neurodivergent Rebel posted a “What’s the deal with Autism Speaks?” These 2 incidents within a few hours of each other sparked the need to start blogging again. Something I’ve been trying to get the gall to do for a long time. You can watch the less than 8-minute video here & follow along with the transcript, or read it directly under the video clip. (https://neurodivergentrebel.com/2018/03/14/why-autistic-people-generally-dislike-autism-speaks/)
In 2014 when I worked for the 2nd Peer Support company of my life, I was FORCED to participate in Light it up Blue in April. I was FORCED to participate in this nonsense that actually does way more harm than good. I was told – while alone with a certain higher up, that if I didn’t “give face” for pics, etc, I might lose my job. Nice. Thanks for the freedom of choice there, jerks. As you will see or read, the AS campaign acts like “we” “SUFFER” & need to be “corrected.” It is not looked at as a different way of thinking. A different way of viewing the world. A different way of reacting & dealing with everyday changes, appointments, Activities of Daily Living, bullying (a HUGE part of Autism, as I was told by Dr. K.).
As I stated to some friends when I said that I was going to try to start blogging again, I am, by no means, an expert on Autism. But what I am an expert on is me. This week I will be turning 46 & Simon, my ESA dog will be turning 7 two days later. We are separated by Thanksgiving Day this year. I am an expert on what has happened to me. What I have thought, felt, done, reacted, etc. I was highly bullied from the get-go.
The neighborhood boys used to surround the playground & I had to learn how to scale a 4-foot fence & run home like the wind, sometimes with my dog (my 1st puppy), Shilo. I had to learn to fend off boys on the way home from school trying to get me down in the bushes by the railroad tracks or the river. Sometimes I had to sprint to an old abandon building, climb through the railing, & make a 9-10 foot drop, sprint across the grass & jump down into the smaller river (stream) & run down it underneath the houses past my parents’ house, climb the bank back up to the street & run back up to my parent’s house. When middle school started I had to fend off sleazy girls calling me a slut (not even knowing what that was) & trying to beat me up in the bathroom because of my odd name & because I was different than everyone else. When I was in 10th grade, there was the plague of pregnancy in the high school I went to. One very pregnant sleazeball walked past me at the bus stop & said “SLUT!” I retaliated with “I’m not the one who’s knocked up.” Later that day, I got the shit beat out of me. Fortunately for those dummies, they didn’t hold down my very powerful ballerina legs, just held me up a few feet off the ground in the bathroom by my shoulders. They all got some great pains to their abdomens from my legs. When I ran down to the principal’s office, he called my mom to come to pick me up because of how bad I looked & was traumatized. For senior prom, the place my date picked was where the whole lot of those sleazeballs went. I was called a slut throughout the whole dinner, meanwhile, they had their 1.5 year old kids along at the restaurant feeding them, some pregnant again. I was called a slut because the dress I designed & my mom had made was what was popular in 1993 – carwash skirts & dresses. I had the ballerina’s legs, why not show them off in an appropriate manner for an 18 year old? Also where my date picked had absolutely nothing for me, a vegetarian at the time, to eat. He wanted to go there for the seafood. His bill was like $26. Mine? $3. All I had was a side salad & a roll. So again, I was a slut because I wasn’t eating & I was like 110-120 pounds at 5’4″ tall. (This asshat’s first choice was to go to Kentucky Fried Chicken for a before prom dinner. With me – his friend, a vegetarian. He in a tuxedo & me in some sort of fancy pants silky soft material that would stain like the dickens – IF KFC had anything for me. This guy was later deemed the Bill Clinton guy b/c he was infatuated by him so much. Got the same watch as him. I swore he’d rather sleep with Bill Clinton than anyone else in the world. (Makes me wonder if he converted to veganism when Bill announced he did.)
So those stories were what Dr. K & I discussed. Along with the fact that I have stood up for ALL friends & even non-friends to say, “Hey, what you are doing isn’t right!” I’ve taken many beatings in the school hallways for that – and bathrooms. I learned early on to hold my bladder as best I could from 7:30 AM – 3:30 PM. Sometimes, if I really did need to go, I’d pop into the nurse’s office to chit chat & use her personal bathroom. This trait I carry around to take a stand for those who are too afraid to stand up for themselves is what got me banished from the mental health practice a few blocks away from where I live. I stood up for a person who has a mental health concern to be able to continue seeing their therapist. Now I have to accept what happened & just hope that I made it better for those who didn’t know billing procedures in Pennsylvania & were too afraid to ask. I hope that no one but me was switched to that condescending goofball who poo-pooed my brain capacity. I usually don’t tout “I went to practicum at the University of PA’s 2 Veterinary Schools after my book studies at Harcum College.” I don’t usually tout my Chemistry Honors project at Penn State University of relating Program for cats & dogs (generic: lufenuron) to DDT. I usually don’t wave it in people’s faces that I have about 9 years of in-person college, due to switching majors & trying to add human massage therapy to the veterinary world. I wasn’t called Super Tech at my most favorite regular vet hospital I worked at from 2000-2004 for no good reason. Up until my first husband’s domestic violence got so out of hand that it affected my work, sadly, I was a super tech. I never did it to show off. I did it with great empathetic compassion for my patients. I was super at veterinary nursing because I was well educated because I paid attention in school & to this day – still have never gone out partying. I was super because my brain could figure things out quicker than I could think them – if that makes sense. I just “knew” the answer. Of course, due to my low self-esteem & not trusting my gut, I’d double & triple check calculations, protocols, etc. For instance, when one is dealing with anesthesia medications – you are putting that being on a plain just hovering above death. At the one emergency hospital I worked at, if an emergency surgery would come in, most of the other newer nursing grads would ask to switch with me because they said they were nervous. I told them that the day you stop being nervous & are totally comfortable pushing anesthetics into a being’s vein is the day you had let your ego take over & that being will crash & maybe even die right in front of you. You need to be a little nervous. Being a little nervous keeps you alert & on your toes. Anesthesia is nothing to fool around with. It is there for a great purpose. To provide pain relief & unconsciousness while a problem in the body is being corrected. It is not to be misused or abused. It is to be respected at all times.
<p class=”has-drop-cap has-white-color has-dark-blue-background-color has-text-color has-background” value=”<amp-fit-text layout=”fixed-height” min-font-size=”6″ max-font-size=”72″ height=”80″><br>It’s good to be writing again & sharing some of my journeys through chronic illness with you.<br>As always…Thanks for reading. Take care. Be as well as possible. And until next time…
Wow – I really went off on a tangent there, didn’t I? So yes, this recent diagnosis of Asperger’s really does explain how this brain of mine works the way it does. I see things all around me that no one else sees. I hear things that no one else hears. I feel connected to things around me that not many other people can say they see, hear, or feel these ways. So no, new, uneducated (regarding Autism) PT, I most certainly DO NOT want to be medicated for my way of looking at the world. As a matter of fact, just 6 days ago, sitting in the shoulder & knee surgeon’s office I said to my husband that maybe it would be better if I went back on all those psych meds so I wouldn’t annoy people with my meticulous thinking. He shot me a look & said, “NO!!! If you do that you are just covering up the problem & not taking care of the root causes. You have come too far to go backwards again.” I had my answer. Right there.
It’s good to be writing again & sharing some of my journeys through chronic illness with you.
As always…Thanks for reading. Take care. Be as well as possible. And until next time…