Knock, Knock. Whose there? Autism.

My defiant streak during the last Reddit CEO overhaul led to myself joining a few more commenter groups. One of those was a female autism group. Some of the recourse has been "what is the ultimate goal of diagnosis or treatment?". Those with Asperger's seem to believe that the relief of unmasking should be their goal. One of my last breakthroughs from therapy is that so much of my language expression is pulled from imitation. Its a bit embarrassing to admit that I sat down one day did my wail and screech of joy only to realize I was quoting famous sesame street characters. 

I am still in the stage of self doubt however about "am I neurotypical, for this reason or that?" So I understand I have these echolalic expressions, but what about social responses. I mean I hate the grocery store because I don't want to look at faces and to get around that I smile like I'm still a store clerk to avoid holding eye contact. Yet, how do I know when I'm not masking?

One of the answers to this on my forum was that "its who you are when no one is around" but that doesn't completely solve my problem because I am anxious about rejection and negative feedback from others. Even alone I will worry about upsetting the people in my house and I know they are already weirded out by my habits. Think depression sloth or goblin gf... 

Today however, I finally had an actionable representation of mask on/off. Someone pushed there cart into me at and Aldi waiting in line and just kept doing it. Like we are talking right on my ankles and against my ass. The non-masking me was my original response of "I can't believe they are doing this...its a major social crime and everyone can see it. Punishment must be issued." Of course, when they saw there mistake and said a measly 'oh sorry' my mask slid right on. I've never felt it come on I just knew I could handle some situations better than some of my family. They call it my ability to either be mercenary or fill up the room with bullshit.

So masking me, turned it into a joke and gave them a acceptable reason why they made that mistake with a joke that encouraged them to "be happy with themselves". "Its okay you must have found something good to distract you. Share your wonderful time with me so we can be friends". Honestly, the level of main character barf it takes to so easily buy that but of course some people really are forgiving. 

I always thought I must be a pushover because according to my therapist (who I have been seeing for half a year), I am a people pleaser but my justice sense seems way to high for that to be true. If we were putting me on a alignment chart I am 50/50 with chaotic and lawful neutral. On a side note, it might be a fun quest to find out the mbti of which sesame street characters I imitate most. But yeah feeling the mask slide into place in order to keep the peace was a palpable feeling. Its the off and relaxed part I seem to have more trouble with. I know some of it is my perverse joy in responding "no" every time my husband asks for a a simple task. I never got to choose participation as a kid or set hard boundaries. Me giggling thankfully doesn't annoy the pants of him.

I have also done official screenings which are available for autism. Specifically, I believe it was audhd that was among the list of things that social security third party reviewer suspected. (One of my first cousins was recently diagnosed as well which is what got me looking besides tiktok). However, those high results also correlate with traumatic brain injuries and a certain manifestation of ocd. Something I intended the psychiatry services at my center to be able to test but they only are capable of treating mood disorders. I am still pissed they gave me a lazy working diagnosis of bipolar II and a medicine that is toxic to heart patients. 

For some reason I haven't told my therapist about the new heart diagnosis, pots. I think I feel confused and guilty that it came so quickly after just one visit. Of course, he had 5 years of repeat testing to review. Then again he also didn't tell me which subtype in order to further tailor treatment. So in a weird way it was instantaneous diagnosis but also overlooked for so many years.

What should I even feel about that? 

Non-compliance versus Poor Case management

Another mediocre visit to the local emergency room has passed. While my body does not feel back to its status quo, I find today my mind is more bothered than anything by nagging problems. (I can't be too mad over a lackluster hospital visit because they really pulled out all the stops for me last time when my vision was in danger.) I knew awhile back that my disability case was strewn with hidden agendas and omissions. It felt however that that was behind me until recently. A phone call came in today to remind me that my CDR was in fact not done processing. So the threat of becoming homeless and having my medical care taken away is being strung over my head again. 

So adding the resentment I feel over my stroke being hidden from me, along with now a myocardial infarct around 2 years later-- to the being pushed out of a hospital without care. Well I was already suffering a depressive episode from bodily decline, this may just double down. What annoys me about my review is that it wasn't until I discovered the information regarding my stroke that I confirmed I was approved for disability under a psychiatric condition. This means for ten years now I've either flew mostly under the radar or been viewed as non-compliant. People who are non-compliant are probably among the 3-15% that get kicked out of the program. I cannot afford that to be me as I know from testing the waters in hopes of using ticket to work that my body always breaks down after as little as a week. 

Recently, I've given up two of my few remaining hobbies. Gardening and genealogy, though to be fair most of my genealogy work is already done anyway. After moving my plant plot to the back corner though last year I had a bad dizzy spell that felt far too much like a sudden stroke it scared me being that far from the house. It's ridiculous because its just the backyard but my lot is a quarter acre. The changing weather in Michigan also screwed up the season start and stop times. So plants aren't doing as well as they should. Even the ecology of are yard is changing. I can't keep up with weeding and we are reaching the peak of needing real laborious repairs. That's the bad things about houses eventually you have to sink big money in. 

I was at the very least able to get the shower walls redone but it still needs paint and the caulk I used is failing. Yet another thing to make one depressed. At the moment, I only have the energy for one task a day and I cannot explain the sleepiness. My night terrors have been gone for awhile at least but my sleep quality since my sudden biliary problem (cause of my er visit) has been very poor. The doctor who said she was in charge of my pancreas is suddenly playing hot potato now that there is a problem and my gp has so much to worry about already. He doesn't need to see me months early. Makes one a bit nihilistic that it would be fine if everything just disappeared like a switch turning off. 

From my childhood and twenties experience, I don't trust a psychiatrist to do right by me and diagnose correctly. From my neuro and post-stroke care, I know most drugs don't work correctly on me. From my random encounters in the er-wild, I know there is maybe one or two safe medicines for me. I would be so exhausted though seeing a therapist once a month. Lord I pace my doctor appointments out months from each other. Having a month with two events in a row is awful. This is however what I am going to have to do. I need a paper trail, I have to manage my case again, which may mean ressurecting the giant medical binder. I've made word documents before of timelines and notes-- organizing used to be fun before someone threw it back in my face. 

If I wasn't a bleeding heart, maybe I wouldn't be so susceptible to the "you don't deserve it" crowd. 

Fandoms and Mental Health

So I am not sure if I mentioned it yet on blog but some months ago I was rushed by ambulance to the ER for a closed traumatic spine injury. Given no sign of trauma outside and my settling down after muscle relaxers/painkillers I was released pretty fast (i.e. cost cutting/triage not treatment). The next day I discovered it was a serious injury after scans were taken by the chiropractor. It was beyond what they could repair but also an injury that had previously "healed". So a few weeks on steroids, relaxers and painkillers I had to adjust my lifestyle now to fit my circumstances. No sitting and driving for more than a few minutes. In fact in the beginning I couldn't even use the bathroom. It got me well acquainted again with my television and I even treated myself to upgrading to an Xbox one since there was no end in sight to my bed rest.

At some point I fell into the idea of finally watching Anime and later reading manga. This is probably do to the fact that its a hobby my husband shares and he had been complaining that I don't interact with him and his hobbies. Much like how World of Warcraft went however I am now more interested in it than he is?!!?

Having a pension for shojou and romance like most girls however our tastes are not very overlapping. In fact I even investigated yaoi which when I was a teenager scared the crap out of me. As I recall I saw a copy of something random at a bookstore and practically dropped it in shock. I couldn't understand why girls wanted to see two men (lets be honest most are drawn as boys still). Of course, now that I am closer to understanding my being and able to reflect logically on it I can easily say that it's the dynamic roles and beautiful bodies that are a obvious draw.

There is quite a bit about my sexuality that it has made me think over though there are somethings that I would have trouble still putting into words. I would not want to become the poster child for example of some right-winger who is excited to finally find a person who was forced (i.e. groomed) to be gay. Having not had that experience I may not have then identified myself as bisexual but deep down I know I would still have had the potential to be one. In some ways that's why I support people who prefer to use no labels or make-up even broader ones so that people are not boxed in.

Born to what now?

You know my hematologist's office seems to think I am special because I can walk and talk when I have a hemocrit of three. For those of you not in the medical profession anything under eight is severe (a.k.a. how are you not dead? Are you stabbed?) anemia. Mind you I've been riding a fifteen for some time now, after a few years of regular iron transfusions. I have a lot of unanswered questions about my health and certain events when I was younger. Some of these are questions for myself and others about things outside of my control.

Today I actually answered one of them. Did my severe Anemia ever almost kill me? The answer is actually, yes. While I personally believe it all started with the hemorrhage I had in a girls bathroom in seventh grade, it wasn't until high school when my thyroid disease kicked in hard that I began to be unable to replace my blood volume. So there I was mid-cardio on a starvation diet when I experienced what I had thought was a stroke. My arms and legs went numb and I became temporarily blind. I believe it lasted about five minutes before my sight returned. I just sat in silence scared out of my wits, but I could still hear so I knew I wasn't dead.

Apparently the term for this is "greyout" and it's number one cause is shock from blood volume loss. It was also in these last years of high school that I began my do anything for spare change campaign so that I could eat at least one meal a day. My freshman year was spent eating notebook paper to calm the wrenching feeling. I have serious food control issues today, and get panicky when a supply runs low. Controlling food was also something my parents did at home as well. Though they didn't do it maliciously, they just expected me from age six and on to figure out someway to eat for myself, unless it was a special occasion.

I think for the most part with medical problems I thought I was being a hero (i.e. John Wayne) by grinning and bearing it. There was also the childish part for sometime which was a fear of needles.I learned to pass that by taking what I call control of the situation, by watching the needle. Yet one has to recall that I had years of medical procedures forced on me. Now a few were necessary but I was more often than not, handled poorly. Even as a baby I was used as a guinea pig for nurses and new mothers to train on because of my size. "Large baby is a safe baby", mind you I had been allergic to my mother and fighting off her antibodies for nine months resulting in jaundice. I guess that makes needles my enemy from day one.

It became a circus however about my mouth after the car hit me in 1995. In fact I creep out my current dentist because I can almost sleep while they work on me. What can I say I got used to needles, sharps, drills and contraptions in my mouth. Indeed it was my original dentist who told me he saw signs of a heart condition in my gumline. Of course no one wants to believe that young people can have serious illnesses. As much as writing out all the medical woes and dangers that befell me would be cathartic its also far to negative to fully invest in, so moving on?

What I find my mind questions now is how and when my disabling condition really started. I think that will probably become clearer when a strict diagnosis can be made. Thus far we still only have a categorical one. Ankylosing spondylitis however, has peeked it's way to the top of the list thanks to my new eye syndrome. God bless lab verifiable symptoms. Yet I've had problems my whole life, are we really looking in the right spot. I mean it's taken so long I almost wonder if I am the hindrance. There are a few nonlinear occurrences that could be a cause, or at least maybe I need to use them to separate out my symptom timeline. What really put me on this path?

• The car accident in 1995 that may have left a TBI and spinal degeneration?
• The possible lyme infection I got when I was twelve after a girl scout camping trip?
• The nerve pain/leg dystonia I started getting when I was fifteen years old?
• The major dog bite I hid that could have led to sepsis?
• The second car accident where I developed a blood mass in my leg and cellulitis?
• The mild gangrene I got when I was nineteen and self cared?
• A drug induced reaction from an FDA approval pending medication?
• A pre-existing condition triggered by an environmental stimulant?
• Or a genetic disorder taking hold at a natural time?

Beta-zoid Blockers and the Lonely Hearted

Its funny sometimes the warnings they give about drug side effects. It can be a reminder that one is human like everyone else or that one is also unique. I've acquired a new medicine for my heart which as a beta blocker is supposed to cause nightmares and night terrors. Ironically it seems to have evened out my sleep and turned psychological over stimulation into more abstract storytelling.

Indeed during my short stay in the local hospital at the end of January I actually had a sleep paralysis event while fading in and out on the gurney. I was pleasantly surprised when the real nurse woke me up since the dream doctor I had been talking to was telling me I was having a heart attack. It had been like that for some nights now prior to my actual and apparently snowballing cardiac event. So they did their due diligence and checked me for PE's, clots and heart failure. Once again it came down to sinus tachycardia but this time is was persistent and not episodic. Speaking of due diligence they were even kind enough to provide a breathing treatment when I mentioned I had recently finished a cold. To make the event more fun my heart rate would decrease temporarily if I was laying down on my left side. Because God forbid anything that happens with me be cut and dry.

The sleep paralysis is rather annoying because I have been getting the waking kind where I believe I've been released from dreaming already and then WAM! something super scary happens. I have already asked my husband to wake me if he hears high pitched whistles or rapid groans from me which indicates an event. He's just not on top of that sort of thing which makes sense since my family is known for having Somniloquy. Waking me up under normal circumstances often leads to a battery of cuss words and comments from my unconscious self.

More scary than being trapped in a deadly situation (real or imagined) is that I received my SSI review paperwork. I immediately filled it out and sent it off though I did repeatedly misunderstand one of the fill-in categories. A bit odd to ask what treatment you get but then say not to describe tests, procedures or medications... Regardless I am worried that I don't understand still quite why they so easily approved me. I worry that I left some data out or the fact that I don't currently have a new neurologist will hurt me. I am still annoyed that the physician assistant I saw at the second office wouldn't listen about my closed spinal injury. Truthfully I don't quite understand it myself as to whether it is a disease process in my lumbar region or just a bone/cartilage injury that isn't healing.

Constantly lately I have also been a bit obsessive with worry on any stressful topic. So now I have thoughts of  "Did I include the right data?", "Will my lack of new neurology records affect my case?", "Might my doctors not support a disability claim because they see me for individual diseases?", "Do I seem too active because of my social media accounts?". I can only know personally that when I have good days I can get a lot done and when I am symptomatic I cannot accomplish anything and require a caregiver. My entire family knows I exaggerate my activeness on social media barely able to scrape together photos of me outside of my home. My issues with pain are also still not addressed by anyone which as I said about my spinal problem means I should get a lumbar MRI. Right now I also have a painful rash that is persisting as well and unresponsive to fungal medicines. Even my asthma medicine seems less effective. I just hope when I can get it biopsied that it may help in providing an umbrella diagnosis. I hate being bits and pieces.

Only in Sad Holonovels...

There is some acceptance to being chronically ill or disabled. I even took a course on it during my associate program. The Sick Role is a sort of contract or stage part that we ill folk agree to play. It also comes with complications however in that it pollutes our lives and can overwhelm family. Right at the end of winter I came down with a bad cold. It lasted longer than usual and after the nasal problems cleared up I still had a cough.

Urgent care seemed to think I was contagious as you can see from my awesome mask couture. Honestly the coughing was more a problem because of my incontinence. My underwear drawer will never be the same. I had a partner in crime at least since my sister got pink eye again. With no phlem coming up they gave me a numbing agent for the lower lung and a strong cough syrup.

I thought it was working until one night I could not breathe. Heather talked me through the worst of a asthma attack and I vomited up a lot of liquid from my lungs. The next day the fiancee was willing to take me to the PCP who of course was out of the office. From there I landed in overnight care at Beaumont hospital in Grosse Pointe. The process was slow but I was informed later that my vitals were taken twice because they were unbelievable.

The workup included a lung xray, breathing treatment, CT with dye and eventually a cardio workup. What was odd was their avoidance of testing my urine sample. Mind you I know I was severely dehydrated since the first sample was practically tobacco color. After a night on oxygen and prodding and poking they agreed it must have been allergic asthma which especially hits hard those with a weakened immune system. That means steroids and some antibiotics for good measure which I just finished today.

I also made some major changes at home. A new air filter for one and some much needed cleaning. The fiancee got us a water purifier which I have been using round the clock. With the exception of all natural juices I have cut every thing but water out of my life. I can't help but think however with all the food aspirations I had a few days before the hospital stay that perhaps this problem is just as much to do with my GERD diagnosis as anything else. There seems to be a circular patch of my throat which catches and spasms from some sort of irritation now. Much like a valve can't close and is letting liquid in other places. I have yet to schedule my PCP followup since he is out of state but I'll have to take care of this.

Breathing, talking and swallowing problems are definitely NOT something I am prepared to just get used to living with. Hopefully we can adjust my GERD medicine since in all honesty I stopped taking it 75% of the time. Between the insurance and a hospital changing the drug type it unfortunately left my dosage somewhere in between the recommendation for either. I must say I liked the hospital version because it left a funny mint taste on an empty stomach. It also didn't give me stomach rot, a term I use for too low a blend of bile and acids to digest food without pain. One change is how I take my thyroid medication now, 6am rise and then back to bed until at least 10am for the rest of my medication. It does seem more effective now.

Can't Get Enough of Those Ferengi Trade Laws

Finally the mobile heart monitor is done with. I had the bad luck to not only be allergic to the adhesive sensor pads but also experience a region wide power blackout which turned of the monitor in the last few days. Needless to say my followup with the cardiologist was underwhelming as well. I've got scars from the monitor and nothing to show for it. The only posed answer for my tachycardia event is a environmental trigger. Thinking of it now that jerk better not have been saying he thought I was a drug user. They always due a full workup for that whenever I show up shaking, vomiting and experiencing neurological symptoms. Being on record as having dystonia at least has helped with that particular ageism stereotype. I didn't think a possible heart attack would lead some one to presume the same thing. Let's be real of course what he thought was that my thyroid caused it. So of course I was sent to the endocrinologist who said absolutely not. A guess of mine is perhaps I accidentally took two of my thyroid prescription since it resembles my lisinopril tablet. Except I am sure that didn't happen. Something that was also alluded too is perhaps my heart is working too well. This I assume is his way of reconfirming my ectopic beats without actually telling me I have them because I might freak out and overreact. Surprise I already knew about them. 

I also just had the followup with my opthalmologist who I was sure would find grave news. I've been getting ocular migraine and headaches so bad that I can't concentrate more than ten minutes at a time to do schoolwork. Somehow I am hanging on in this quarters classes even with over the top expectations from one of my teachers and too similar courses. So my field of vision test was about the same and my nerve damage was as well but they were troubled that it almost seemed to be healing. I assume whatever was damaging it was under control then. When I mentioned dry eye he insisted on punctal plugs and did the worst job explaining them before he got them in my eyes. They don't seem to be helping or harming. The problem is still my eyes not making their own moisture. Doctors are beginning to look at me strange when I am upset over a non diagnosis. Of course these are the auxiliary specialists who don't know that I am a chronic sufferer of a insidious disease process. 

I do feel a bit silly as well because I recall in my behavioral science coursework going over the psychological paradigm of "the sick role". It would be very easy to guilt myself into believing that as some people have told me I am a lair hanging on to what makes me special. Trust me I would much rather have back the freedom of eating, going and staying anywhere I want without extensive planning. Then again I am a bit afraid of what more responsibility would return with increased functionality. Now of course when ever I get into one of these self doubting and self hating modes something always happens. Today it was fecal incontinence again which at least I am able to bodily clean up myself. What I am learning is to not put stock in the transient symptom processes because that's what always produces the null result. The stable problems like chronic dehydratedness, intestinal/bladder control, inflammation/rash, pain, dystonic storms, severe anemia, food allergy with malabsorption and neurological crisis are all reliable. That reminds me I am supposed to choose a new gastroenterologist which no doubt means a colonoscopy this time. I never did call back about the scar tissue they collected from my lower esophagus to test under microscope. Since the doctor was so rude I just didn't want to and I doubt my keeping off only 30lbs the past year would impress him either. This morning is my appointment with the hematologist for the next iv infusion which hopefully still wont require whole blood as well.