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? 

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.

Gloom Clouds still make rain!

I don't think I have ever had such a bad time with online medical research as I have over my skin condition. Yes, it's in the exzema family which every website blanketly tells people isn't a serious thing. My scarred butt would very much like to disagree with that. I did with longer searching notice that the particular modality in which my dermatitis grows and spreads is the most serious of that family. It also has a nasty habit of resisting topical medication. Still at least I don't mind looking a little funny. I can't imagine how a vain person without my persistence could ever go outside again. I will at least have to rethink bathing suits of which I didn't have one that fit anyway.

The SSA is taking an interesting tact with my review process. They have more than enough to say I still qualify but the have become very interested in my panic disorder. Because of the heart arrhythmia I am technically taking a medicine for that. Doesn't it always confuse people when medicationshe have a dual use? The cardiologist I saw was very weirded out that I was on lisinopril for my kidneys in case I finally jump the gap between pre-diabetes and diabetes II. So while I can say I am on a medicine for my anxiety that doesn't seem as important as why am I not seeing a psychiatrist? Well for one more drugs would probably make me sicker. I have a lot of drug sensitivities and if my sister's trial and error search for her Bipolar medicine taught me anything is that it's too easy to get suicidal thanks to a bad medicine.

Find me a psychologist and I would be much more interested. Speaking of the brain all this records seeking and a recent MRI got me guilted into making a to do list about following up with the specialistsame I don't see much. That would be the neuro ophthalmologist whom I am due to see and the new neuro that couldn't get my old files. I guess I won't have to worry about files because my old one takes my insurance again! I even got a super early appointment so I won't have to wait so bad in the office.

The question is has anything really change relevant to them?  What do I have that they can use? Well as of my new lumbar MRI I know that I have Degenerative Disc Disease primarily in my lower back. I have figured out two major chemical stimulants that trigger shaking fits, Cafinee & BVO. I also know at least one visual trigger for my Dystonia...a scene from a very specific movie. Beyond that I know police lights also tend to set it off which I am pretty sure means it's not lights so much as patterns which do it. I can also tell them that the rheumatologist didn't find anything to explain my positive csv serum. I guess that's more than I thought.

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.

Duty to the Federation

Its a funny thing about blogs that even if near to no one reads them you still feel a duty to post. I've been so bombarded with troubles that I couldn't even take time to vent here in a blog. My neurologist will be changing ironically to the doctor I had chosen myself before my primary sent me to the more expensive one. This neuro also specializes in sleep disorders which may mean its time to address my sleep paralysis events. I have had three within the past few months. Actually four...the last two involving realizing my dream was deteriorating and wanting out about the time that a animal would attack me. What is exceedingly strange to me is that I used to get the paralysis as I was falling asleep but these last four have come not only more often but been as I would wake up. I have never discounted the fact that though I did not show signs of apnea the sleep test came with strange brainwave results. My numbers for C-Anca have already doubled between tests enough for me to postulate it is connected to my yearly flare ups. Since the rheumatologist has reopened her practice I hope she can find something.

Another medical problem has been my back. Until a week ago I was immobile and in horrific pain. Seeking a second chiropractic opinion I found out I have a crushed disc that has been that way for at least a year. I was impressed by the neuromuscular exam the second chiropractor gave and also enraged that the other had been ignoring my obvious injury. It has taken quite a few techniques via YouTube to find one which works since mechanical decompression isn't covered by my medicaid.

College is another bother. I have just finished with a horrid teacher who apparently has some vendetta against high achieving students. I am fairly certain from talking to classmates and the teachers final words to us that more than half the class reported her to the Dean. I myself asked for a grade appeal and discrimination complaint. Neither did anything except for protect me from a malicious plagiarism comment she made which was unfounded. Given her comments that I should drop out I am not surprised that she would try a tactic which means automatic ejection from the entire school. Sadly I will have her as a professor one more time probably in next fall. I piped down in hopes that she will forget who I am and grade me fairly again in our next meeting.

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.

Torrential Rain on Mars

Sometimes there is just nothing to do at 3am on a Sunday but blog. I have been extremely silent lately because not only have I become more ill resulting in a short hospital stay I also took up a new pen pal. Having someone interested in everything again really makes one neglect the cathartic activity of blogging. Slowly but surely the past few months I noticed some odd changes in my health. My hair became smooth and fine again like before I had thyroid disease. I seemed to feel thinner but there was a major Kablam! Around the corner. Normally I am extremely sensitive to heat so when I had some miserable days in a row and began complaining I expected the guys comeback to be about cost efficiency. Instead he showed me the thermostat was barely under 80 degrees. Its been impossible since to concentrate without a fan on me at all times.

For three nights in a row I had a racing heartbeat and some fluttering. I falsely assumed that perhaps my blood levels were to low a month before I return to the hematologist. When the pace didn't slow on the third night I went to the emergency room. An EKG and portable chest xray later I was admitted for a short stay. The electrocardiogram didn't seem to show anything major but I am fitted for thirty days with a heart monitor. I can take it off on September 10th which is not soon enough considering the rash, broken skin and scaring I am getting from the adhesive sensors. What's more troubling to me is that neither my general physician or the endocrinologist know what to do for me. Obviously a bad thyroid could be first in line for causing a random heart event.

The more worrisome thing to me is the hyperactive response of my gastrointestinal tract. I can't seem to eat more than 900 calories a day so my weight has dropped about 15lbs in a month or less. Food is barely being digested or at least my system in entirety is moving at warp speed. Its funny how weight comes off a person. I can see it in my feet and face a new slenderness but there's so much padding everywhere else it would take a larger amount to see much different. My hips seem to have lost a few inches and my stomach is firmer which I imagine means its shrinking. There has been a promise for awhile now that most of my pain and diseases will disappear if I lose weight. That's a big lie of course but I guess some functionality would change.

What does seem to be true is that I am taking another step down the independence ladder. Very soon I won't be able to reach the rung for a future profession let alone a doctorate degree at all. It scares me but I also am enough of a realist to realize that still leaves me with a lot. My feet however would disagree as the pain has been getting worse. I really don't focus on them enough but the right has developed severe tension pain in the long bones. September will be followups for all of my doctors including a return to the opthalmologist. With the headaches and eye strain I've been having I wanted to wait until he confirms I don't have inflammation again before I purchase new glasses. I'll be glad to get them however since my spare pair are barely usable do to my poor judgment in frame size as well as large scratches. I can feel fall finally coming in my bones and I'll be happy for the cool air. At the moment I feel like the surface of Mars crying out for cooling rain.

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.

The Other Riker

It's very annoying to live in a sense two lives. There is the life I want/strive for and then there is my limitations that I am living in. Occasionally they cross like when I dragged myself through the second to last semester of my associates but still finishing and maintaining a decent gpa. It is the time when they don't cohabit well that I get worried. I've just had a small flare up which had some new sensations under my skull like acid on the back of my brain. It's got me wondering if my recent MRI which seemed blank to me might miss new symptoms which of course happened with two weeks after the scan. I was able to get a poor video of my shaking attack towards the end of the episode. The shivering is not very clear but the abnormal movements are fairly obvious. It looks like what I've seen of chorea which rather frightened me.

Despite this my mind flipped right back into my better life. I am once again having the waffling sensation about my educational path. I still do not want to let go of social work. Some of this feeling came from a email I tried to send to a clinical social worker I once interviewed. Explaining how I left the field behind and trying to sound like I was okay with it brought up a lot of emotions. I guess it wouldn't matter to me if I felt like I was trading up on a professional level. That is to say taking another avenue to stay in the social sciences like counseling. I am also confused about the debate of further graduate work: second master's or doctorate, maybe just a certification? The irony is that with all the services librarian's have as a specialty there may well be one that resembles social work. It's also not fair to imply here that librarianship is trading down, it's not, but it is in a different paradigm then my original goal.

Perhaps the only reason I am hung up on this is that the choice was made for me not by me. Then again didn't I make the choice? I knew in the last semester before selecting a place to transfer for a bachelor's I would either have to work harder than other students or change my angle. It was my choice to change my angle. On the good front I've got straight A's for the first week of graduate school in education. I also came across two more jobs that I might qualify for, i.e. academic advisor. I truly miss my community college which is ironic in the sense that I wanted to work there. However I believe its more about wanting to relive the best years with most possibilities. The reason I took up to an email to that old social work clinician was because my roomate and brother in law is in need of a internship/practicum. It is right where I left off in my social work career. Perhaps I might feel fulfilled if I returned to Macomb with my bachelor's credits in order to complete the social work degree. That notion is of course ridiculous since I already have two associates.

What if they solve my disease tomorrow and can even reverse some of the damage? Would I still be satisfied with what I've chosen or would I want to return to social work? It could well break up my relationship. My guy hates how much energy I put into advocacy especially when the stress of it exacerbates my sickness. Learning the limits of my end of the clinician/consumer relationship was something that got addressed in my coursework especially since it is a major cause of burnout. In regards to my current education I am also learning the difference between the work ethic and philosophy of teachers focused on children versus adults. I find primary and secondary teachers quite intimidating, especially those with 30+ years experience. The relationship of educator to student is much more contractual in post secondary which is my focus. It's frightening to think I'm already at my master's and still have so many decisions left to make.

Alternate Timelines or Reruns?

Its come to that time again where I suddenly am doubting what is wrong with me. This time I think it is prompted both by hearing my roommates cousin is accused of faking his possible ALS by his sister and the fact that I received a copy of my recent MRI. The idea that someone could accuse a person in a walker if not wheel chair who requires assisted living of making up his symptoms is appalling. It makes me worry about how others see me. I am trying to function as close to normal as possible without inflicting an episode on myself. I have been warned before that patients shouldn't see their imaging because they often jump to conclusions over shadows or lack there of. I do not see my lesions any longer on the film. That means it took them at least 3 years to heal.

Last night was another bought of sudden food allergy. Its a good reminder I guess that I can't just view my neurological and hematology symptoms as the singular disability. In fact it occurred to me to look through the auto-acceptance conditions for SSA. Liver disease is one of them. I've already been told mine is the progressive form though in the early possible reversible stage. That is to say it could become stagnant but not improve. It would be the same as treating the bone problems in my feet which will eventually make it impossible for me to walk without pain. You can only keep it from getting worse.

I have yet to schedule with the rheumatology specialist. I had waited to finish at the opthalmologist first. My lack of social grace if not enthusiasm is drawing some critique again because I don't want to go to a cousin in law's first baby's birthday. I already had two painful dinners with my parents to celebrate the holidays and my graduation. As usual I am too preoccupied to enjoy the event because of nausea and panic. Happily the winter heating season is at least coming to an end so I won't have to worry about running outside in tears and considering ripping off my clothes to relive the temperature sickness.

Perhaps this is just as it has been in the past with my off-year from a flare up causing doubt. I do have my medical findings CD at least from my SSI case at least. I found it hidden in a cardboard envelope that I thought was a safe place during the move last year. Everything is of course blacked out and still has the warning of liability attached to it. I am sure one of two events prompts that action, either mistreatment causing the flare or perhaps misdiagnosis after. I could care less with the exception of wondering why I got disability so easily. My sisters three year review seems to have passed silently. I believe mine is coming either end of this year or perhaps 2015. Graduate school begins within a few weeks. I hope I am not fooling myself about my competency. There is the realization however that I may not truly get to work again but I have to try, don't I?

Borg Ocular Implants don't Itch

This was a interesting followup to my older sets of MRI. I had been reccomended to see a opthalmologist after my nerve conduction testing in early 2012. Of course I can only handle so many doctors here so since I had just gotten glasses I put it off into my to do pile.

I gave myself a few months off after the last disastrous neurology appointment. In fact I hadn't gone back since before my move to mid Roseville. Ironically I showed up early only to find I had been scheduled at the office south of my new home. That office is much more vacant and thus keeps appointment times better. I also saw a secondary physician who knew of my case already.

My chipper attitude is something all my doctors remark upon as helpful but it only exists in cases where I am not receiving poor care. I believe if I stay steady at this Eastpointe office I will be able to stay positive about the neurologist again. I even got some answers this time about my spinal tap and 72hr EEG. Most importantly the banding in my serum and CNS is matching meaning my phantom condition is systemic not just neurological. Anyway I left that office with another upcoming MRI and a two page list of blood work testing.

Finally working on my eyes was interesting. The vision field test and cornea scan indicated a dead spot on my left eye and neuritis that was inactive in both. When I came home bragging that they found something my cousin and roommate pointed out that it could impact my driving ability. Luckily the position of my vision loss is only a small slice of lower quadrant. Less than 10% of my vision region I would gather from the charting I peeked at. The left eye I also believe is the same that my sister is now legally blind in. As I was warned by a optometrist might happen to me. Taken with my spinal results this should mean MS is finally off the table.

I am actually kind of sad about that since the easiest way to describe my condition was the terms for flare and exacerbation. There is however some light at the end of this tunnel. I have gotten together a medical binder about 3 inches or more thick that is organized. In doing so I looked back at my diagnosis on file with the oncological hematologist, polyclonal gammopathy. In my search to make sense of all this pain and annoyance I came across two conditions of interest. One is a sister condition of MS and the other is a syndrome set of a progressive neuropathy with polyclonal gammopathy and sojourn's disease comorbid. Of course caution has to be taken before I adopt another terminology for a differential diagnosis. As my hematologist said my doctors can only give sympathy as my disease blooms into something more typical. My team slogan remains "Your to young to have this!"

Please State the Nature of the Medical Emergency!

As you can guess from above I found myself once again watching through the first two seasons of Voyager on Netflix. Somewhat as I expected my initial flare up this year has led to some small wakes that have sent me to the hospital twice. The hospital seems reluctant as ever to put much effort into anything diagnostic. I don't blame them considering the insipid nature of whatever nonsense I'm actually suffering from.

My hematologist is still pulling up the heroic effort of diagnosis. We've moved back into the realm of cancer possibilities which kind of sucks. As he said "Your condition is not fully developed yet" which probablly explains the delay in diagnosis. What we are working with this time is the knowledge that I have secondary polycythemia following the larger attack. This would follow the para protein to multiple myeloma model that originally brought me to him as a patient. The neurologist is presuming to test for Lyme disease and Sojgern's Syndrome due to the absence of Ana specific marks in my spinal/blood. I still find it rather funny that when they drew the fluid it's color and translucence had them assuming it was pointlessly normal. Under lab evaluation however my sample is simply blooming with markers and contaminates. Another interesting fact is that I came across by accident in my web search a poly neuropathy caused almost entirely just by the presence of a specialty para protein. Now mine specifically is related to myeloma which is all I know for sure. I'd like to address the polycythemia's cause since that is a likely connection to cancer ie. a hormone secreting tumor. Also there is then interesting mention of COPD as a cause which may indicate something about my heart and lung stress along with exercise intolerance is more legitimate than I knew. I would certainly never sing on stage again in my life with my lack of breath control. Perhaps I could use a pair of holographic lungs. Maybe a holographic gallbladder would be more appropriate to help my digestion which is exactly why I'm posting so early in the morning. Dinner went somewhat counterintuitive towards then end. Luckily the nausea spell was a short one with minimal to no vomiting for once. Post Cholesectomy syndrome perhaps.

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!

Eugenics or Bust!

So my sleep study went as well as I expected. I tried to keep a daytime schedule but alas my mind was only willing to sleep less than 3 hours once those 32 wires were on me, out of the 8 hours they observed. The Apnea criteria test was negative which was good but now they think my inability to reach REM while I was with them was indicative of my usual sleep which I adamantly said it was not. The drive home was monstrous with about an inch and a half of solid ice sheeting I had to scrape off the entire van.

On a different note I've been introduced to the monster, Metformin. I only call it a monster because in this first week or so of taking it my body has gone insane. Nausea is to be expected of course but my lower gut is not liking the sudden change in diet. Too little fiber is my guess. The best I could get down was a salad, cucumber and a morning breakfast shake. It reminds me a bit of the starvation diet I was on when my liver was abscessed and the gallbladder still in me. Eating less than 25g of fat a day and nothing more than 10 in one meal was definitely shedding pounds off me but it was mostly due to the anorexia side effect of benzotropine.

I do however have a serious reason to lose weight, two actually. For one I am pre-diabetic which sucks balls. Secondly, the endocrinologist has diagnosed me with polycystic ovarian syndrome. The better I respond to Metformin to reverse possible diabetes and the lower my weight the more likely I could have children! My gynecologist however has avoided diagnosing or treating me in this at all despite my sister having the same exact symptoms and condition. In fact I really have almost no trust in the woman at all now. I almost think she was waiting for my body to naturally pass the point of no return, sterilization.

There is however more to do about the diabetes and it doesn't end there. My blood also came back positive for the thyroid antibodies which means I have active Hashimoto's Thyroiditis. Most of my weight gain no doubt has begun with that and decreasing activity. At a point when I became insulin resistant as well the two simply reinforced each other until I became completely unresponsive to lifestyle changes alone. I will need to build a strong exercise plan if I want to really see results fast. I doubt however given the size I was when I began to have a liver band that I will ever shrink lower than a size 12 in women's clothes. My hips are simply to large by now though I did once sport an 8 while I was at full height.

But I have to say all these pills don't seem to sit well especially the larger ones. Upcoming is my first lumbar puncture which may have its time changed and a new daytime EEG might be scheduled. Since I'm symptomatic again it's easy to resent the doctors for asking for more. I miss the Vicoadin they hooked me on at this point. Being so high you don't want to eat and can't feel pain sounds great but there are too many costs to it. Just like the 6 months of psychotherapy I had to go through for my withdrawal. I do not want to experience psychosis like that ever again.

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!

I'm not your buddy, Guy...

Well the good news came today as I met the Endocrinologist. I am diabetes free! The testing wasn't fruitless however. I have hyperuriceimia...with gout so they've put me on allopurinol. The bad thing is that my Liver enzymes require another specialist for Liver disease. At least I have an answer for this creepy briny feeling my skin gets along with some horrible arthritis which is the Gout.


I drove through Grosse Pointe to reach the doctors office in Detroit which was the wrong way for sure. I ended up barely on time but the appointment was very smooth. She is under the impression that not only could I have Hashimoto's Disease but that I have Insulin resistance. She also thinks from my blood results that due to other factors and my hormone levels that I have PCOS just like my older sister. This would explain so much. I've had two rupture scenarios in my teens and then a confirmed cyst that was 8cm at its largest in my early twenties.

The Gout not only explains my sore and swollen joints but also the surgeons remark regarding my kidneys that are probably suffering from the extra uric acid. Guess I'm baking in my own juices. I have to do some fancy Thyroid tests and a follow up for insulin but other than that the ball seems to be back on my Nuerologists side of the court. His appointment is on the 16 and I hope I can squeeze the sleep study in post holiday. My dreams have been racked with nightmares again. Bad enough I have to wake for fear of a damn heart attack. I wish holidays weren't do stressful. It's not helping my health at all having so many guests in the apartment.

It's Okay, I'm just a Red Shirt!

There is something sinister (or stupid) about celebrating the news you probably have Diabetes with food. But there I was leaving my Primary Doctor's office only thinking about a McDonald's breakfast. I was startled to learn that I've gain almost 30lbs in the few months since he saw me last. This is an amount he says is not medically possible without a extraneous condition even with a bad lifestyle. Not to mention my last visit with the hematologist ended with another pre-diagnosis of Thalassemia. Both are in confirmation testing now.

I don't have that bad of a lifestyle. I know why I'm fat and it's not just because my exercise options are limited. The real culprit is poor food quality and the bad metabolism I was blessed with. It hasn't helped of course that I've been lax with my Thyroid medication. I've blamed my sudden issues with hunger and excessive thirst on needing a higher Synthroid dose but the cause might be more dire. I hadn't even realized anything was wrong until my rings stopped fitting and I noticed a new red mark on my belly.

My Grandfather whose health problems I've seemed to inherit also had Diabetes Type 1. I'm even getting them in the same order he did. The gist of the matter is best summed up by my physician today who said "Your just to young to have these things happening to you." He was also referring to my neurological issues. My Sleep Study has been sent to the hospital again to set up an appointment for. Hopefully that will finally happen. Meanwhile winter break has started at my college.

My roommate's little brother will be here again this Friday and until Christmas. He's sort of an unintentional terror so when my Husband discovered I through away a extra TV adapter that would have kept him out of our hair we ended up in a horrible fight. Luckily I said nothing that couldn't be taken back. Some dumpster diving didn't bring up the lost item either so I'm having it overnight-ed. Anything for peace and quiet especially since our little cousins visit happens on the only days off for my guy before he works through the second and third holidays this season. He requested one off but as usual he got shafted.

The husband drove me to my 6th month review MRI on Sunday. I myself am still baffled that anything is open on sundays. The technician sort of let slip that the lesions were still present. She asked me once what we were looking for and surprise, surprise I couldn't remember. When the test was over and I recalled it she nodded and looked toward the screen with a big exhale relieved. I have a feeling that come New years I'll have to redo my medical information sheet with all new diagnosis's and updated drug lists. If the diabetes is true then I wonder how long I've really had it. After witnessing one of my Step-father's crashes I have to say it looked somewhat similar to when I was hospitalized in 2011. At least partly so but it's okay, I'm just a red shirt. It took 5 fillings for my teeth which are still very sensitive and I've given up on the Chiropractor.

Defensive Maneuver Riker Theta

You would think a month or so off from schedule conflicts and doctor visits would be nice, it's not. My sleep study is one again delayed because of a disagreement with the hospital and doctors office about how many forms are necessary. There is also the new mysterious order for a 24 hour EEG that the hospital is opposed to doing without a known diagnosis. Humorously the Doctor is on leave which is not likely why the paperwork fight erupted.
On the home front I am dealing with a sleep schedule change that isn't going well. I'm not even sure what prompted it. Now of course I'm having panic inducing dreams and waking up with muscle weakness. Having recently found out about nocturnal epilepsy in my grandmothers line I am starting to wonder. My bigger trigger after all is sleep deprivation. Epilepsy however scares the crap out of me. Not because of what it is but what it means for me. I would most likely lose my drivers liscense which means I'd lose my car as well since the unlicensed cant own vehicles. It would affect my ability to gain employment at a future time as well if it's on medical record. I just talked to my fiancée about this regarding Medical marajuana liscense. Sure I could get one but it's a registered certificate meaning it shows up on a background check. I could just as easily have a regular prescription for pain without the discrimination. My household can't survive without me as a driver and I just bought that darn van!

My dreams though I really can't deal with them well. The first few were medical torture dreams concocted from every test every done to me then placed in the most anxiety inducing locale. I haven't been doing anything to trigger bad dreams that I know but with how I feel upon waking I am fairly certain something nuerological was going on. I guess in someways being found epileptic might garuntee me SSI for life but I wanted my free will and choice to work even it never came to fruition. The only good news regarding epilepsy for me is that it is specifically, Nocturnal Frontal Lobe Epilepsy, that runs in my family. That should mean I can retain my license if I work hard at it. My next doctors visit is with the hematologist for new lab tests. I'll also be getting fillings at the dentist that afternoon. Not my favorite thing. Trying for some shut eye now... To tired to proofread.

Blind as a Relay in Junction Panel Two

So its happened I have now crossed into the uncanny world of being wholly reliant on a assistative device. Luckily the first things to really go were my eyes so it's just glasses.  My Neurologist recommended I get my eyes checked and to some extent I think he'll be happy that I need the lens correction as if that will solve all my symptoms. He will not be that lucky however.

As of now I'm in the phase where it's still fairly uncomfortable with the glasses on. When I take them off however because my ocular nerves have relaxed I can no longer see more than gossified shapes. Eventually I will go blind in the left eye like my sister is going too, but that shouldn't happen until after 40. So what about everything else you might ask. The migraines are still there and so is the double vision. My headaches above the right eye at least are now gone. For the past few nights I've had bloody noses and vertigo upon waking. Last evening I had a sleep terror so glasses are not the cur it all for my medical ambiguity.

My sleep study was supposed to be back on but the hospital hasn't contacted me again so the date isn't set. I'll be seeing the Endocrinologist on Christmas Eve and hopefully she can rule out major endocrine disorders so the Neurologist will stay on track. Before Christmas will be my second MRI to prove/disprove ALS along with a check to see if the brain lesions have grown or multiplied.

It will be so much better when I can research whats wrong with me and finally make some informed decisions regarding my future. So far I can't even decide on a Master's Program though I do want to continue in school if I can. Finding a accessible program is almost impossible. If you don't believe me consider the fact that I had a IBS attack yesterday and wet myself twice today. Being able to admit that publicly either makes me extremely gross or very brave. I'd like to think it's the second one.

Holoprogram Gamma19 has been Deleted

So Medicaid has finally snarled its feisty head and snapped at my doctors. My sleep study was cancelled by my Insurance HMO despite all criteria being met and severely desired by my primary physician. I believe I may have hit a internal spenditure amount for this month.

On Tuesday I'll have to break the news to my primary physician at my physical. I don't think he knows about me seeing a hematologist either though the later claimed to be a close buddy of his anyway.

This afternoon I had a odd moment talking Star Trek with my sister. It ended in a cold stare as I defended the Enterprise series to her and she remained unreceptive. I did notice her flub up when he mentioned a non cannon source as proof positive that Enterprise doesn't belong. Our best moment was in agreeing that the series is continuital with TNG not the TOS films. Yes her focus was on the films not the actual 40 some episodes featuring Kirk and Spock. She can't get past he comments made at the time of Enterprises release that the Vulcan characters were very emotional. As far as I'm concerned that's idiotic because Spock is a perfectly fine personality model especially for TPol who even says that extended stay on Earth loosened her habits. She also had heard that they change every species this way to which I explained that only a few were known to us shortly after first contact and the rest were individual to this series incarnation. Until my sister can sit and watch it with a open mind she'll never see it real value.

My back has been killing me since the infusion along with my flanks. I hope my kidneys can survive this stress.