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? 

Long Gaps when Progress was made

In all honesty, had I not had a strange week I would never have returned to this blog. I haven't seemed to need it for sometime now. That isn't to say that nothing medical has happened. For Pete's sake, its COVID out there, people! Yet as I foolishly told my GP when I saw him last year "this is quite the most stable I have been in sometime". Which is honestly a testimony to him as a business model and honest practitioner. With other people to worry about and chaos in the world I only had a few developments. Yet silence is always punctuated by something and I am trying to bend my mind around my reality now at least to save my sense of self. 

My parents are ill, I am ill, my sister is ill. I really didn't need to be thinking about my ability to have a roof over my head or mortality, but here we are. The following I am including as a time capsule, for my mindset when I first had a traumatic visit to the ER for my eye (autoimmune fun) and what has happened after. I hope to be in a better mood tomorrow after having a day out with sister and being nearly halfway done taking strong dose steroids which is making me moody as hell.

I've always been of the belief that your upward trajectory in life is equally weighted by efforts and willpower as it is to general skills you get at birth. I was granted disability eleven years ago as my health suddenly imploded between my two college programs. I adjusted my perspectives in order to continue my education in a adjoining field. I have held onto the idea that by some random act of chance I could at least marginally improve myself in the future. The pipe dream being entering the workforce full time again. This year as I am up for CDR once again (roughly my third, they never come on time) I expected much the same cycle of wanting to improve and then karmic interference. I tend to self soothe by reassuring myself of hard facts and that the logic processes will still be the same so I will continue on as usual, at bare minimum. 

This year however, months after my CDR cleared no problem I am thrown during a particularly bad week at my household into not only my near-yearly emergency room crisis, but also by getting an appointment for financial review. General google consensus is to just take it as a bureaucratic time waster, but they are asking for very specific documents which are not relevant to my life. (VA/Burial/ ect.) So I was trying to decompress by talking to my sister and mentioned that I am not coded for SSI status under the condition I applied myself under. When I was trying to find where I had footnoted it, I instead dropped into the large files and came to a horrifying discovery. I am notated as being severely cognitive impaired and incapable of likely handling finances. The oversight doctor said this would most likely have been due to stroke (Affected IQ: 70).

Needless to say my ego is beyond bruised. My family has been complaining for so long about changes I have made for my own comfort that they do not like. I thought I was just mellowing out and being more honest in how I am willing to spend my time/energy. Now I am smacking straight into a pillar, that for over ten years people have let me believe a lie. I did finish my Bachelorette and Masters degree during my first few years on disability. I thought I still might have a way to finish any sort of ascent in my lifetime goals. But now here sits the truth, that person was not possible and will likely never be possible. I will never leave poverty, I will never earn equal to my partner and I will always be looked at by a failure by those who should be peers, because I cannot heal this brain injury. 

Normally, I would take this news as celebration that my responsibilities to perform for others sakes are nulled by this knowledge. I could be liberated by it, but the people in my life don't work that way. So now that I have reached my ceiling I guess I am looking for lateral moves. There must be someway to broaden my scope again by breaking down walls around me, even if the ceiling height will always be fixed? Why is the SSI program so cruel that we aren't allowed to make better for ourselves without utter horrendous fear placed upon our person. 

You are what you post on Reddit

 I've been playing with Reddit lately, which is all well and good. Sometimes I forget that the way I write is for others unapproachable. So after wanting to read this edited version to my sister I got part way through before she reminded me "Don't you have a blog for this?" She did direct me to an interesting forum as well which hopefully is a bit better than shooting blindly into a reddit barrel. Instead this gem gets to be immortalized here in all it's properly proofread glory.

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So I seem to be running into a wall when it comes to seeking mental health services. That is to say its a diagnostic problem. When I was five I got sucked into the Ritalin trials for ADHD. #thanksmom The medicine did not produce the desired result. I also recived a traumatic brain injury, which according to everyone I know changed my personality. (I was 8). To summarize my childhood and adolescence, I suffered through waaay too much trauma silently (car accidents, attempted murder, rape, violence, etc.)

Now my regular health took a bad turn in my late twenties. I had always ignored my mental health because that was a major issue for all my other family. Yet, I ended up with enough neuro-psychiatric symptoms that it had to be addressed. County mental health said the best place to start was as "Bipolar-NOS". Though the intake therapist was pretty adamant we would not end up with Bipolar as a end diagnosis. ("We have to peel away the bad habits you gained by living in a house with mentally ill people. Then we can see the real you."- County Therapist). Now when my regular health had to take the lead again I was put on a neuroleptic. I was no longer with a therapist. I had a rare and severe reaction to the medicine. My insurance also changed so I ended up at the same new therapist as my sister. Somehow it was never communicated to her that I was having a drug-induced psychotic episode, worsened by having to cold-turkey withdrawl. So onto my paperwork went a nearly identical diagnosis to my older sister.

[Bipolar I depressive-with psychotic features].

A similar excuse was also given to me. ("Thats not what you have but for billing purposes they will beleive it."-Sisters Therapist). Now onto my government paperwork for disability went a totally different set of diagnoses, after I finished my withdrawl syndrome. This was about 5 months later...

[Panic Disorder with Agoraphobia]
[Organic Brain Disease-Unspecified]

The new therapist never touched base with me again as to wether the new diagnose completly wiped the slate clean or if this "lets start at bipolar and see what happens" bullcrap is going to follow me until the day I die.

Whats even better is guess what I have two degrees in, Behavioral Health/Clinical Socialwork. There is no way as a witness to or even a short term caretaker for my sister that I will ever beleive we have the same disease. (I also have never fit the dsm-iv criteria). It's just baffling to see the same mistakes made everytime.

So I guess I just don't know how or if I should move forward with this? I would assume these people lied to my face but honestly I am happier now understanding my conditon as PD. I also have partial results from a beta blocker. It doesn't feel complete though, I just don't know if whats left should be handled as psychiatric.
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Adult Wrapper for a Kid Size Candy

So the other day I actually said to myself that maybe I was finally past everything. Then three things happened today and gave me my first panic attack in nearly a year. First off, I was alone with a man earlier today who makes me uncomfortable. He would be offended I keep saying so because truthfully he only approached the cutoff line entirely one time. I hadn't felt uncomfortable for a long time because I was never completely alone with him again until today. Short of the matter is he is sexually attracted to anything female, including me, and regardless of my relationship status.

Cut to an hour after dinner and I decided to go out on a quest for an over the counter antifungal liquid to use for an ear infection. It's apparently not commonly sold otc anymore because its secondary uses are better off with creams, smgh. So at the last store on my trip I see what looks like the man who raped me walking inside with a uniform on and I froze up. My fight or flight turned on and I couldn't move until I knew it would not be him. Strangely the real fella had just bagged my groceries last week while I had the husband with me. Once again, I guess the power of being in a pair overcomes a lot.

Now the drops I need come in a pre-made mix that requires a prescription BUT my regular doctor has already signed off on this going deaf thing. "Go see an ENT" is all he says. He also says that he doesn't do forms which has thrown a wrench into my paperwork for disability discharge. It's one page but they couldn't even do that right. Going to take a lot of pestering to get them to fill out a new copy. I might as well resign myself to debtors prison now before they drag my life under.

Of course, some people would say being in less than perfect health already is pretty far under... I would tell them to just enjoy the fall. So I happened to look up the list of ent doctors in my medical plan today. There's a practice not too far from me. My cat of course, decides it's our snuggle kangaroo time so she was pretty freaked out when I started hysterically weeping and grabbing at my chest. Heck one could have almost believed it was my pseudobulbar going off over some sound again. While the whatever side of my brain was doing its thing I was wondering why I was reacting so badly.

Sure the procedures they would do are a bit on the scarier unknown side but what is it that sets this off to 110%? Suddenly I realized it's probably the ten years I spent having ortho-facial surgeries including many complications. Probably the only one that didn't go wrong was my fully-awake wisdom teeth extraction and titanium implants. Now of course, being that its panic disorder my brain also said "oh hey, look they do surgery for facial and thyroid tumors". (Inner me was like 'HELL NO shut down that line of thinking right now son!')

It's really kind of a privilege that my current medical team has not seen me go full on hysterics with fear. Last time it happened was a procedure when I was 13 years old that they lied about. (I.e. I agreed to one thing, not another). I was screaming and shaking so hard that the people in the waiting room were disgusted and confused considering my age. Of course, thats also one of my 'dad's a hero' stories because knowing this was 100% not correct behavior for me and what the procedure we agreed to was...he wasn't having it. Thank heavens I got over my needle phobia! Now i do know that some nurses have seen it at stage one (belligerent and impatient) during my quest to get a neurological diagnosis. I apologize to them if they ever read this.

Meanwhile, it may take some psychological gymnastics to get me into an ent office. Especially, without pulling the good ole David Grant "just let me die" response when they want to do surgery or something crazy. Did I mention I've also been restrained against my will before? ...yeah so kid me is having none of that you-can-just-walk-out adult logic tonight.

Dear Stupid Fucking Parents

Before I start off let me say that the title here dosen't mean just mine or just your parents. My back herniated again last week, possibly L4/L5 this time so I am writting this on a tiny phone screen instead of computer desk. What this means is that I'm a grumpy little woman still on my back whose gone through withdrawals from three medications already; Valium, Steroids & Vicodin. Still not as bad as my coming off of Benzos because I've had fits but no psychosis.

When your stuck on your back there's not much to do but think and consume media. That's meant a bit more activity than I'm comfortable with on Facebook, thanks to anxiety over being virtually attacked again. I've also tried some xbox and now Netflix. Unfortunately my Netflix feed is heavily unorganized since they dropped my sleep-buddy Futurama months ago. It's hard to navigate and bring back up the reccomendations to relevancy. That means I've gone exploring and landed myself at "Take your Pills".

I've been joking to myself lately that there are a few subjects which just aren't safe to talk to me about, i.e. abortion and breastfeeding, we'll you can add psychiatry  to that list specifically when it relates to children and ADHD. Having gone to college for social work and getting certification in behavioral health I can tell you that today psychology as a profession understands the concept of the token over diagnosed condition of the year. Many are resentful of it as care providers but it pushes the drug agenda.

Rather this documentary has me in a horrid mood because it makes almost no sense except to present the widespread idea that Ritalin drugs 'are out there'. So that brings me back to my own issues of when I was diagnosed. Keep in mind he talked to my mother in his office and I never met the doctor, even through 2 way glass, until after he put me on Ritalin. What I can't seem to find is real honest statements on what happens after drug treatment fails. That used to be the criteria as proof you had the condition. The drug worked, but what happens when it doesnt.

Things with me made no sense anyway, was the doctor unaware I had a TBI, and a personality shift after. That I had to relearn mathematics and was ostracized, nay physically endangered by my peers. When I was defiant with him later in his office could he not see that I was looking at him and critiquing his ability in his profession, as a 12 year old. Indeed my life in school did not get back to normal until I refused to keep taking it. The first teacher who observed me on it said I became dissociative/catatonic. I had a chronic need to see and try to be involved in the administrative workings of my school as early as elementary school. I needed the control. Let alone my Panic disorder had been present since kindergarten, when I can now currently understand what a panic attack is and identify it.

How is it that I can easily see the causes and pathways when a professional could not?  I gather my only answer came from care I sought in 2010, wherein the therapist told me no one would ever be able to diagnose me until they peeled away all the maladjustments I'd made to hide mine and my familys conditions. I am certainly not apart of the antipsychiatry movement but I would warn and judge parents critically for dosing thier kids without concrete evidence. Though thanks to my generation which suffered through the first wave of Ritalin and Adderall bullshit, kids today are safer and do have real criteria and tests.

Not So Much Incomplete

I am rewriting over an old draft save that has since become obsolete. For a while now my hobbies shifted and while I had some emotional backlash to it I think it's become okay. Rather I must be at the age now where there's no use not understanding yourself. In the unfinished post I just went ahead and published as is, I mentioned thinking over my sexuality at the beginning of reading smut/yaoi/romance manga. Somehow I began writing again in the midst of this, mostly from pressured thoughts. That has moved into writing gay erotica, which is oddly comfortable.

It seems now that I fought it a little then let myself dive in it's become obvious that the issue is not in fact my sexuality but instead my gender identity. Except for self-exploration there is really not so much in knowing this now about myself. There have been as many signs and obvious facts about me having GID. Even in the womb I was supposed to be male twins, then after the ultrasound a boy. Rather when I was born a girl I still required a minor surgical intervention because though I had the parts they were sealed shut. The public more often insisted I was a boy, I played with boys, I refused to wear dresses...and I even went through a phase of peeing while standing like my father. I also had accidental exposure to high dose testosterone once.

I don't get along with women in general, I can tell that their brain is on a different frequency than mine, and our priorities have always been different. Even my instincts towards women have always been protective like a man's so that is probably why after I was abused I easily fell into the trap of a man substitute plenty of times. In a way this may also explain my relationship with my former boyfriend who chose to be gay. I was his male substitute as well. It was a year or two after I reconciled with him that I began looking into transsexualism and what it would take to transition.

Probably the clincher in all of this is that I have for awhile had memories/dreams of being a man and experienced a phantom penis while I was awake. I can feel the muscle attachment and the shaft but not the tip...obviously all my parts on inspection are female. Except for shame over my general attractiveness when I was young, I've never been attached to my breasts either. I've also never had any sexual satisfaction with a partner... (until the current one, bless his soul)

Yet strangely knowing all this about myself I don't feel like I am missing much. I have a dedicated partner who is a straight male. The body I have now pleases him and he makes me much more comfortable in my own skin. The possible outcomes of transitioning anyway in my case would be fairly poor as a Gay/bi f2m. It's really reassuring however to have found an article on the validity of these problems recently. It is said to be that over 68% of trans-men experience phantom penis even prior to any intervention. That is to say the cause is supposed to be form the earliest stages of development. Indeed it is the brains imprint of the body's architecture which is the cause.

Good thing Freud isn't alive because he would probably chock all my problems up to penis envy and some other perversion. He would definitely enjoy classifying any of my fetishes, the old perv. I am curious though at this stage how my brain may show a difference in sexual response. I've know for a while now that much of my enjoyment is blocked psychologically. Rather I view the categories of stimulus as conditioned or instinctual. Under this format I assume an MRI would show both gay/straight porn as instinctual and same-sex (ff) as conditioned. Certainly using gay porn as a "female" is strange to the rest of the world. Perhaps I am simply stuck between the urges my twin, if he existed, may have had and my own.

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?

Dirty Definitions and Labels

So I started a post that will probably never go up here about my sister and I's catfishing experience. Ironically getting flustered over it again led to my sister sharing her closure with me which is nice. Long story short I am now Facebook friends with the catfisher who turned out to be a better person than the man she was portraying. Today as usual she posted one of her request threads asking about music recommendations. I had come across "Thank God I'm Pretty" by Emilie Autumn and thought of her earlier this week. The song itself however err's on the bit cold and glass half empty for me. So while I shared it with her I was already set to think more critically about the music I enjoy.

She Wants Revenge is one of my most listened to bands now and being in the thinking mood I found something in their "Tear Her Apart" video deeply disturbing. The video itself is fine but it occurred to me that people physically enforcing their actions on me has been a theme in my life. No doubt since someone was complaining about a child petitioning to make the Scouts programs gender inclusive in the US. (It's co-ed in Europe who knew!) that took me back to the bad memories of horrible sexism and lack of safety I felt in the scouts.

It's odd to be both persecuted and objectified for your gender. The scout mothers thought it was alright to let their children swarm me and hold me down or lock me in rooms so I could not leave. On the same hand their children left unsupervised with me thought it was alright to watch me urinate and take my clothes off to see my body because I wasn't their sister. My mother would remember from my young childhood that I very quickly developed a hands off policy because touching felt far to intimate, even with a nonsexual partner. I tend to think this tendency came about because being queer there is no gender barrier to who can excite you which is fairly damn embarrassing. At least two more times I had been held down by a group of people but only one other was sexual assault. Some male children in my sixth grade class had knocked me around into a submissive stance and took turns once my skirt was up molesting and sodomizing me. That last nearly twenty five minutes and the adults in sight magically were not alarmed by five boys bent over a girl with a skirt and panties off.

The last one I recall was a hate crime against me in high school. I sometimes wonder if this was where I acquired my head injury which affects me today. It is impossible to fight ten people at once despite what they show in movies and television. I should clarify that fight in this instance means to fight them off. I in no way engaged in anything, it was simply the knowledge I might be gay which caused me to become a target of gang violence. The only silver lining here would be that the individuals involved all got permanently expelled. I got in-house suspension because apparently I am big and green like the Hulk so obviously it was a fight and not a assault that the school would have to report to the police.

This would be the part where I turn into a sappy blubberer to prove that unlike some people I know I am indeed not a sociopath. My sister has been invaluable during all of these events. Sadly a few were reminiscent of things that also happened to her. It was my sister who spent months picking me up from school after the assault even to the taunts and threats of those who perpetrated it. It has always been my sister who lets me say point blank and no holes barred how I feel being gender a-typical. So I can't take back anything that happened to me in my life but I never have adorned the mantle of victim because I am lucky enough to have been always able to talk to someone. I dare say queer and trans people without that luxury are truly suffering.

Does it have to be so interactive?

It's a bit weird because I am curbing my impulse to write a instant message to my sister by instead posting an update in this diary blog. She has finally taken the plunge into college enrollment and I don't want to let my blue mood interrupt that. As you can see I've recently watched the film "Inside Out" and while I raged over the imbecility nay the arrogance/narcissim of the character Joy, Sadness had some wonderful one liners and jokes.

One of my favorites comes when she first plops down on her face saying that she needs a few moments....or hours to just be blue. The sluggishness is quite right of those who face real clinical depression not just the situational blues of life based events. Lately I've been having non-circadian rhythm again which is hell on my body's healing and system regulation. The change to daylight savings seemed to have helped and I had a few days where it seemed my schedule normalized but then bam!, it's back to some weird 3/5/8 combination spread out over 72 hours and never in the right order. That loses a lot of productive time during daylight and of course makes it hard to remember what day it is.

Another thing poor sleep does is often trigger neurological symptoms. The otherday I got a strange feeling of my mind kind of floating inside my skull loose that I might burst into vertigo at any moment. At the sametime my legs have been feeling wooden or like lead upon wakening. Very bad signs. However there is some direction to this process. Keeping bad awake hours also affects when I take my medicine. Not taking my pills on schedule causes severe thyroid flares and intestinal distress as well as blood sugar problems. Having passed two episodes of that in September and October I wouldn't want it to happen again.

So the first and most important thing is making sure at least my thyroid medicine is on time which I have managed. The later mid day pills can be more flexible between 11am and 2pm. Being weak from either sleep sickness or not enough is also confusing. While making a morning snack the otherday my hands got weak and tingly as well as my vision getting crosseyed. I didn't know if I needed to sleep or stay awake for it to resolve. Eating helped and I ended up sleeping.

The latest thing to settle is my fluids. I've had salt cravings for which I bought sunflower seeds that really helped and were fun to eat. Salt however wasn't the problem in fact it's probably really a issue of electrolytes and water. This is the time of year I usually get IV treatment and an ER visit both providing one or two large bags of fluid. I can say though investing in a new water bottle and purifier really has helped increase my intake. Yet tonight I have small leg cramps so I can definitely tell it's a fluid thing.

Just a Little Theta Radiation

I am a true fan of hard science everything from astronomy to genetics. It has a real power to inform and improve peoples lives. You need a lot of help in this when you have allergies and chronic diseases. Yesterday I came across some bad news that I have dangerous deletions in my mitochondrial DNA sequence. I had been researching it for genealogical purposes when up popped a national institute of health article related to genbank about those sequences controlling proteins, some relevant to neurotransmitters. According to my checkup with the hemotologist my levels are within range still though the hemoglobin is a little on the high side. This means I won't be needing transfusion until next spring. So yes, I certainly believe in the effect of science.

Last night I had a horrible dystonia event which lasted 3-5 hours. Since it was with extreme abdominal pain I can tell it was from a stimulant allergy. Of the suspect materials I encountered one was just an old soda pop I used to enjoy and then we ordered from a new Chinese food location which may have had MSG. In the past MSG has set off fevers and my irritable bowel. Yet that was days ago so what could be the problem.

I came across some pretty convincing research just now that my culprit maybe good old Mt. Dew. For one thing it has twice as much caffeine then Pepsi which I can tolerate within reason. High amounts of caffeine make my heart palpitations prominent and of course sets of my dystonia. (I didn't intend to buy it but a delivery man substituted it for another flavor.) The question I have as an allergy sufferer is why only some foods?

I already discovered this year that some brands sell wheatbread that is actually white with dye. This is in contrast to my poor tolerence of whole grain bread which is most certainly all wheat. When companies lie about ingredients it puts allergy suffers in danger and confuses their loved ones. I can drink some "caffeinated" drinks but not others, so why Mt. Dew? When I was tested by my rheumatologist she discovered I was still suffering from active Hashimoto's Thyroiditis. Since my visit with her my thyroid medicine has been doubled and I now have less symptoms.

Looking at the list of Mt. Dew ingredients we find brominated vegetable oil. There is a good chance that its soy based which I have mentioned before I have poor tolerance for. More importantly, "Bromide is a halide which has been shown to inhibit thyroid function by blocking the uptake of iodine. When in an iodine deficient state and bromine is supplied, the thyroid gland will take it in because it's *appears* to be a close substitute for iodine" (Buist, 2008).

Why is bromide there? It suspends the soluble citrus in the drink. Having a serious thyroid condition however makes this a dangerous element to ingest. Yellow dye#5 Tartrazine has also been questioned because of allergic reactions to it. Not only does it cause itching and asthma symptoms it also can cause moderate psychological effects such as sleep disturbance if you are sensitive to it.

Does this mean I am saying its poison? No, but I remind those with suppressed immune systems, food allergies and unusual allergies to pay attention to what your body tells you. Stay safe with what you eat.

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https://en.wikipedia.org/wiki/Mountain_Dew#Ingredients
http://www.naturalthyroidchoices.com/MtDew.html
http://www.epicurious.com/archive/blogs/editor/2014/04/5-things-you-need-to-understand-about-whole-grains.html

Butterscotch Pudding and the Canadian Devil

I think its hard enough to be a mother before you even get around to having guilt from personal choices effecting your child. I was a nasty sort after my parents divorced around 2002 and while I'd like to blame it all on crazy teenage hormones the brunt of my actions greatly affected my mother. It doesn't help that I've turned into one of those people that communicates best in written word so that I never have good answers for her when she wants to discuss our relationship.

Just this last week I commented to two of my old high school friends that are both mothers now. I guess it rather has me in the mood to be honest and dig deep. On top of that I've been doing my hobby work in genealogy along with writing a short quip on diversity. Today's reading focused mostly on issues of nationality which is one of the views I take of my mother. An article popped up yesterday of an open letter from a francophone Canadian to English speaking french descendants in the rest of Canada. In the open responses I was asked "Are you Canadian, Hannah?" All of this somehow has lined up in my mind to answer a question my mother posed to me about "how am I like her and what value she has to me?"

There is no real answer to a question like that of course because parents as I told one of my pregnant friends are so integral to the child's development. There can be no one thing that is wrong or right you did. Parenting is a lottery for which the payout is just as likely to be a resentful child. However this brings me to my point on how I would answer my mother. Her biggest contribution to me was not only her time and patience but also her identity and how her nationality shaped me. Having parents of two different nationalities even if I lived in the States has greatly benefited me as a person so this list is for you Mom!!

What my Canadian Mother Gave Me that no plain American Mother could: 

1. An obscene nostalgia for red maple leaves, and all things butterscotch.
2. The awareness of language especially regional dialects.
3. Subtle immersion into french culture that stems from Quebec, westward.
4. The ability to criticize blind patriotism by showing me two nations faults and gifts.
5. A revelry for classical Europe in all it's diverse glory.
6. Perfect memory of the first two lines of "Oh Canada!"
7. Expressions of different educational systems and a belief that opportunity lies ahead.
8. The experience of music be it old, new or foreign.
9. The ability to spend dollars in coin form and a reason to say "looney".
10. A sense of global culture and travel.
11. Sensitivity for the experience of foreigners, immigrants and even tourists.
12. The need to view family in their own cultural framework, not mine.
13. A place to feel at home and in wonder of it all at one time.
14. Biological connection to not only amazing different people but also different races.
15. The feeling of having a second home or somewhere to run to if I'm scared.
16. Something to laugh about myself at but still feel proud at the same time. 
17. Stories of adventures she had different yet not so different of mine yet to come.
18. Opportunity to see her youthful side whenever we went home together.
19. Awareness of the legality involved in adult life through her choice to not give up citizenship.
20. Lastly, simply a wonderful mother who I know gave me advantages above all else.

Turn Down the Gravity Generator

I was really surprised to see that I haven't posted in so long. I have a tendency to read this site as if it is a old diary often for perspective. Rather I guess life has had me busy enough to avoid admitting my problems to cyberspace. My masters program ended and I folded on both the semi-acceptance to a ethnic studies program as well as a second masters in library science. I think that is why I am so depressed since class ended. This just seems to be reinforced by a feeling of ill which yesterday was about 30 minutes of vertigo.

Even the good changes I had to my life since I last wrote are kind of tainted. I finished one of my outdoor projects...landscaping the front yard only for rabbits and a carnivorous vine to tear it apart day by day. The husband and I adopted a kitten while our local shelter was running a donation only event. She is a gorgeous tortie with some magic color changing eyes. Unfortunately while they in general get along our elder cat gets beat up when she won't play and the kitten won't share. Her entire head and neck are covered with bad bite marks while our kitten just keeps on going after her when the mood strikes.

The husband has even gotten sick recently. I have been complaining none stop about our tap water having a smell for the past month that is noxious to me. Of course no one else smells it so I know its just one of those personal aversions my body has to anything it wants. Watermelon and peanut butter make me bloat now and cucumber I have to avoid like the plague. Speaking of the water the husband and I both have esophagitis though for me it is not new. I am more worried about him being taken care of since he works and for the most part I can cope. Mostly I chug milk like a person with an ulcer would. My zinc allergy doesn't help with some stomach products (tums/rolaids) and you can say goodbye to a decent dandruff shampoo.

Shampoo brings me to money. I wasted some on a bottle I didn't need this month. The student loan excess I put toward bills just sort of slipped away and seemed to make no impact on my balances. My amazingly healed credit score was hit with a ugly stick and can't recover until the percentages are right regardless of my perfect payment record. I still have yet to buy a new pair of glasses that I know I need. One would think at least sleep would help with all this but it's inconsistent, too long or plagued with nightmares. Mostly nightmares...I had to lock the doors two nights ago because a break in had stabbed me through the chest in my dream. It's sad my instincts can't tell dreaming from reality and just turn off once I awake. I guess that's the fault of the panic disorder.

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.

Some Other Quadrant

My EEG went well I think. It was the same technician who had done my evoked potentials two years ago. At the end of July I will be returning to find if there was any epileptic activity. I am also getting closer to my next appointment with the hematologist. The headaches have been back though I had a very heavy Iron rich meal that I think may have helped hold off the dizziness. Yesterday my mother had a major victory by getting me across the border to a family event. While others expect me to find comfort in this and I must admit I wasn't anything but to hot at the time, on review all I can think about is how much I looked alien.

To settle finally the issue of their mutual grave my father met us up at the cemetery office to hand over his portion to me. We were so much like two peas in a pod talking genealogy and computers, Dad and I. Mom even mentioned it is eerie how I laugh exactly like him. Even my enhanced diver's license picture gave her a start when she pulled it out saying from a distance it looks like a image of my father. I admire a lot about my father much to the ire of my sister and mum who see the same things as his flaws. Strange to think that I can't stand in a group of Grant family anymore. I'm sure mum cries just as easily when someone from her childhood of Jones passes on.

Speaking of settling, my MRI had remained the same according to my doctor. Still three white matter brain lesions. They also appreciated the video of my dystonic attack though it didn't reveal anything new diagnostically. My blood titters were positive for c-ANCA. That is associated with Vasculitis which on itself is a cluster of diseases. Something I mentioned in the last posts is if I was better would I change my life back in some ways? I certainly the hell would not! Forward is the only direction I need to go. Something Heather mentioned to me recently because of upsetting comments others had given me was "you are what you love, not what loves you". It points to the idea that disagreements between family should not invalidate your feelings or choices.

Something I don't want to do this week is vent further on the exacerbating comments my family has been making towards me. As I brought up in a good conversation with my mom yesterday while driving home, everyone's chief complaint is my "mercenary" methods. Ultimately I serve my self interest and safety above everything else. In the case of my current recurring illness this has lead some to think I am not doing enough to keep living and happy. On the contrary, by not bending to their expectations and neediness I've made myself quite happy. I am a person of distance in many ways. I communicate best in letters and love things more when I am remembering fondly. The irony to this is I do miss travel. That was something my mom and I did even if it was just to Ohio. To further complicate my mercenary nature I am also extremely partnership oriented. Everything I want to and am willing to do is with my partner, Ryan. That just seems to drive everyone bonkers because they wouldn't care if he jumped off a cliff. As a child this didn't work against me because I would focus on the partnership of whoever I was with. Nowadays I seem uninvolved which is true but no one wants to believe that I simply don't crave the interaction they do. My mom is perhaps the most honestly aware of my discomfort in these situations. I like my slow moving, quiet life I've cut out here in Michigan. Occasionally, I feel like the only one not wearing blinders who has seen into another galaxy they simply don't care to know.

Transporter Accidents Aside...

You know its probably a bad thing to try and blog when your hands are shaking in anger. I think however in this case its probably the best way to responsibly vent given the fact that I have guests in my home. I have a sister in law, under 21 even, who is apparently baby crazy. Interestingly enough the same question of "why aren't you pregnant?" never comes out of her sisters mouth.  Yet once again I am barraged with her need to have a baby without responsibility. The question itself is insulting as it implies something wrong with me but the worst possible thing my partner could do is tell his extended family it is entirely my fault...I don't work.

If only to set the record straight here that is not only a hurtful thing to have people believe but it is also untrue. I work just fine if it wasn't for my tendency to create ovarian cysts. Catch me on a day without those and we'd most likely have twins, something that runs in my family. It has never been about me not being able to have children it has always been a obstacle to conception itself. As I am seeing a new gynecologist this week maybe it is a good timing to review what I want out of all this. I was actually upset with the previous doctor for not providing me a hormone treatment method which didn't prevent pregnancy.

As for raising a child they are only a baby for so long which is something I would look forward too. I am in no way baby crazy though I do have a strange need to pass on a genetic legacy. I was planning on having three children two birthed and one adopted. Of course life doesn't let you plan that well. I did already have a pregnancy scare, for lack of a better term, that I didn't share fully with my partner. His health gets in the way of a sex life as much as mine does. Out of anger I was tempted to march out in my living room and proclaim that but making myself look as uncomfortable and neurotic as I feel around these people would be unhelpful. Truth be told I would say the issue is 50/50 between my timing issue and his health and or fears about supporting a family.

Our last conversation about children ended with him admitting he doesn't need them to be happy and would just as much prefer our cat. Why not answer your sister with that truth. I can only imagine him going so far to place the blame on me probably means that he has some fears of his ego being bruised by the belief that he is infertile. After all behind money and career a man judges his masculinity through his family. How does a woman judge her worth? My mother would hope I do it through career and money myself yet faced with the question "why aren't you pregnant?" I can't help but feel I am lacking in a major way. The issue of adoption is also complex because my partner has a criminal record, even if only slight and situational. Overall my partner has avoided pregnancy because he has this false belief that children will be happier if we make sure they have every opportunity we missed; higher income, education and stable home. None of that is important except in the way it affects directly the psychological/emotional climate of the home and of course physical necessity. The irony is perhaps my graduate work will lead me to a point I am more comfortable finally taking the plunge and having a child.

Replicator Privleges

Image Copyright: MemoryAlpha.Org

There is something horribly wrong about having to battle an eating disorder when you are still over 200 lbs. Since puberty my only weight loss has been through the help of starvation and overexercising. I thought that I was anorexic in junior high but as I experienced true anorexia when on my benzodiazepines for the possible stroke/Parkinson's I have come to do a bit more research on the subject. Anorexia is more than just not wanting to eat it's also a pathological avoidance to it.

My actual issues of body image and relation to food are much more complex. I have Nighttime Eating Syndrome which is a subset of Binge-Eating Disorder and my main diagnosis is Bulimia-(Non Purging Type). Nausea is a main symptom of almost all of my chronic conditions so throwing up is just not something I want to experience, ever. This is in part to my difficulty already in swallowing food, something that's gotten worse since my Esophagogastroduodenoscopy in March of this year. I am aspirating small foods in about 1/5 meals though luckily they mostly get caught at the top of the throat where some strong coughs can excise them.

Eating disorders are not unknown in my family either. My entire nuclear subset are emotional eaters and yo-yo Weight Watchers. My father however was diagnosed with Binge Eating disorder by a therapist who also was treating him for major Depressive Disorder. The relationship ended when that therapist accused my father as using food to commit "publicly accepted suicide". It's not simply just that my dad was a over eater however it is more honest to say it is a food addiction. My father had in some aspects a horrible childhood and food was both a cure and a punishment depending on the situation.

In case your wondering why I'm talking about food, it came to a surprise to me as well that during my last few boughts of food sickness between Doctor visits I dropped about 20-30lbs. I find though that eating even appropriate meals after news like this gives me extreme shame and self loathing, as if a single drop means I will gain a pound. The more weight I go down especially those pounds that reward us with visual differences the harsher I become on myself. The best news this weight loss brings me is the fact that I am no longer in "urgent need" as the gastroenterologist put it of a gastric bypass. My liver however is now home to non-viral hepatitis.

Most would probably assume then that I should own up to that damage I caused myself but it simply didn't happen that way. I don't drink and I didn't over feed myself like a glutton. I was however lazy and as other health conditions pressured my breathing (cardiopulmonary diseases), restricted my movements (dystonia/inflamation) and stunted my hormone levels (Thyroid/sex hormones) I indulged the urge to slow down because activity became extremely painful. It was my duty to myself to find medical care or to ask my parents in the earlier years for help which I didn't do. That slowing down accelerated the weight gain which inevitably became self-enabling...weight upon weight despite my efforts. My sister just received the diagnosis of Diabetes 2 despite her efforts to control the insulin resistance. Now I have to work in reverse and number my problems. Each one eliminated or cared for increases my overall health and weight loss. I do find however that health in my body is not reflected in my mind as these eating disorders much like my agoraphobia come to the forefront. I've been putting those off since receiving my care but it is becoming ever obvious that I will need to address them soon.

The Most Girl Part of Me

So I have success this week with Metaformin. My cycle is back to normal and I have my fertility again. This news however pales in comparison to what happened at my first appointment with the gastroenterologist. I have never ever considered myself obese even as I tip the scales now at 270.  I just take it as a temporary weight gain, but the truth is I haven't gone down in a while. It's sad to say but when you have no control over your weight compared to the average person you simply get used to whatever plateau you are at.

At the end of puberty I shot up to 5'9"-5'10" and leveled out about 160. I thought that was HUGE! back then and had so much shame I of course changed my lifestyle becoming more reclusive and less active. If I could go back I would shake the hell out of my old self for feeling that way since I was practically a amazon goddess. When my Hashimoto's disease kicked in I became fatigued easily and the chaos it played with my metabolism only kept more weight coming. In my twenties I plateaued for a long time at 220 & 250 after my thyroid had died and I began to suffer Intestinal diseases. Becoming secure in that weight was relief. However the low activity has caught up to me fast after the gallbladder disease came.

Today, here I sit then at 273lbs in the office of my liver specialist and the first thing he tells me is that I need Gastric Bypass. I find this to shocking to even consider. Bypass after all is for obese people and I'm just overweight...which is simply how I come with being not in control of my body size. Operating on my stomach just for rapid weight loss seems like they would be taking out the fattest part of me which in truth is true. My father has the same issue with portion size and due to our longer bowel, an inherited condition, that action is more dire. It reminds me of a story I read in freshman English, the most girl part of me. I do find it hilarious however that I spent most of the appointment talking the doctor down explaining how there were a number of changes I could make to lose weight naturally and in fact that most of my family had been able to reduce their weight and keep it off.

The doctor has done his job however, I am scared. My blood work is only 10 points short of being declared diabetic which would affect my insurance purchasing power/coverage for life. I simply can't allow myself to become any more sick than I am in these past few years. I have at least 10 major diagonosises right now all verifiable and that list is simply to large to even convey clearly.

The most aggravating thing about all of this is how many obstacles I have to overcome in order to increase my health. For one my living arrangements aren't stable, I'm on heavy medications that leave me exercise intolerant and at risk of severe emergencies if my diet is altered too much. There is also of course the people problem. This is more of a time issue than anything else. The husband working mostly nights and me needing to eat on his schedule or pay cash for alternative meal plans. Then there are my conditions themselves; they want me to be fat!The husband however is all on board for completely changing our diet but if we do anything it has to be together. First things first though I need new walking shoes...

You Green-Blooded Son of a Bitch!

It's happened. I've finally had another attack. Maybe I should say I haven't had another attack. Between the insomnia prior to the Sleep Study and difficulty eating on metaformin my body went nuts. I've been having serious dystonia in my sleep and noticed twitches in my hands and feet while awake along with the usual painless spasms everywhere. After a trip to the ER with my mom when I threw up food I'd eaten for the last two days before I thought it was a gallstone attack. It was awful I was so out of control I pooped my pants and lost feeling in my legs. It took two people to redress me enough and get me too the car outside. Then came the fever and cold-fire burning in my arms. The game was a foot!

Since it all happened the week of my 72 hour EEG, I was at the office while I was heavily symptomatic. They decided to take me back thanks to my Mom's pressuring and I met the doctor who runs the practice. He put me on steroids and a nerve suppressant called Nuerotin. I sat through maybe 2 days worth of a serious attack before the steroids have killed it almost entirely. I almost can't believe how simple it was. Secretly it pisses me off that I may have only needed steroid therapy back in 2011 when I was bedridden for almost 5 months. Honestly however it is more important not to suffer through it again.

I could have lost my place in finishing my Bachelor's degree and my student loans would have gone kaput. That would have been a huge blow since I'm already putting together my application for a Master's degree. The exciting news is that my spinal fluid was positive. Antigens, antibodies and proteins, oh my! Since the antigens were in both my blood and spinal fluid they have said I don't have Multiple Sclerosis. My phantom condition must be an Autoimmune disease according to their findings. On Saturday I have a followup MRI and a meeting again with the head doctor on Monday. I am happy with my dose of nuerontin but it is another addictive substance...oh joy. The only side effect I have from it is a bit of headache and balance issue which I consider minor. The nerve action is continuing it's just suppressed. I can feel it but painlessly more of an irritation. The odd part was during this attack I noticed it was in my feet as well. I hadn't recalled any pain in my feet the first occurrence. So I am rooting for it being Lupus or Steroid Responsive Encephalopathy. With how involved the head doctor at the practice is now I'm thinking he believes he's discovered a new illness to name after himself. Ugh!

He's not your Friend, Buddy!!

So I've just gotten back from the Nuerologist with smooth sailing. While I expected to once again feel shafted by not seeing the Doctor himself and worse over having to pay a 100$ no-show fee for an appointment they asked me to reschedule...neither happened. There was no battle to the death about the bill. It was waived with a quick explanation and verification that I was rescheduled the day of my "missed" appointment. Though I didn't see the named doctor on the office title outside I did see the same Physician who sent me on my way to Dr. Sabir for Oncology/Hematology. This woman has a great manner about her even with my blabbering.

The nerve function results showed some difference in my Right/Left median nerve test but not enough to be dangerous or even worrisome. The brain lesions have had no change. They are still small and only two in the deep white matter of my left juxtacortical section. Apparently this is my parietal lobe and I have no idea what the actually might indicate except for being centered to the left I would assume affects my right side body functions. The next round of ANA was negative for Lupus which is about 5-6 tests in total.

So I've been given a set of instructions that will self destruct at the end of this message...just kidding. My sleep study is finally happening the end of this month which reminds me my sleep diary begins tonight. On Friday I will return to the Endocrinologist for a 'ye or nay' regarding my possible hormone disorder and insulin resistance. She also did a ultrasound of my thyroid which I believe was unremarkable due to it's size and featureless state. As I said in my last post I am Diabetes free which was a relief since meter strips are frighteningly expensive.

It seems we are down to two most likely causes of my symptoms, a relapsing form of MS or this familial nocturnal epilepsy from my grandmother's family. So I'm supposed to see an eye specialist for optic neuritis which might be pointless since I haven't had a worthwhile flare since I suddenly needed glasses. Otherwise it's just  more blood work, the sleep study , a 24hr EEG (if they can swing it with Medicaid) and a lumbar puncture of the first of February. I'm hoping something comes back obvious and positive so this mess can start working out.

I stupidly asked for an opinion on my graduate application materials recently only to find out that some of my family doesn't support education for disabled students. Not being able to work somehow equates taking up space for a real student. You might as well shoot a puppy in front of me. Perhaps they forgot I got my start in a Social work program. I am beginning to struggle again a bit in school but I almost have my Bachelor of Arts, which I plan on celebrating with a class ring that I always wanted from high school. Perhaps I will transfer back some credits to Macomb to finish out my AA. SW degree as well though it's fairly unnecessary since I have two associates already. All this over achievement is tiresome but I'm not where I want to be yet.


EDIT: Found an article about my specific type of lesions, http://www.ajnr.org/content/20/1/
They are linked to memory dysfunction in early stage MS patients. Interesting!