Yeah, there's a name for that...

So the actual day of my "independent exam" has passed and one would think that would give relief. Instead I am enraged about change, inconsistency and the unknown. I am not doing well mentally which tempts me to request a appointment at the new psych place before my disability review is even done. Getting essentially blank pages however, I am not sure would help when I rather tend to believe that the government is against me. Or it would be more accurate to say they are against spenditures. 

I am spinning out between wanting to just stop existing now and actually taking a peek at job listings. There are so many opportunities for having fucked myself at this interview. I have a feeling still having my drivers license might even be used against me. I felt absolute shame when I looked at my old proud list of specialists cross referenced with diagnoses and treatment plans only to realize that I only see three of them anymore. To be fair, some were temporary stops and that relationship wasn't meant to last anyway.

My dumbass has always made it a big deal about 'not being suicidal' and that I only really had that feeling during the blood poisoning incident. While it did take almost a year for that to heal up and wear off I don't feel posioned right now. Turns out at least as far as up to date mental health practitioners feel, its the same thing. The wanting to disappear now before the agony and suffering of myself or those around me is called 'passive suicidal thoughts'. 

Poor nice fella at my review I don't think understood that even if I factually understand he doesn't come into this opera with malice...I know the next steps of what happens once my disability is turned off.  My house becomes unstable, the car is lost, I go under in debt and maybe slower than I think we lose our home. There is also of course the SMALL problem of losing all of my medical care. I have technically thought about this before that there are really only two of my meds I will die without. Not having them would make me a piece of glass on the edge of a wire. Won't matter what knocks me down or where I fall, I will crash.

Lord I was so irritated by the changes of the office structure that I don't think I even sounded like myself in that exam. If I am being watched at all times then why are we cornered off? where is the camera then? Why is the floor not swept? why are people happy and loud? Jesus christ, I smiled and laughed at random things but I wanted to strangle everyone by the time I was out of there. Who didn't put the objects back front and center where they belong?

Having had to find dates in my medical files for a personal project doesn't help either since I saw how little information doctors have been writing down about my ER visits. That created an interesting data thread though. From what little I could find together, I seem to be on some sort of 2-3year trend of sudden  depression and cognitive function. I am still not thrilled about needed mandatory therapy and drugging when I come out the otherside of this. Yet, working was originally my dream at one time. Now its a nightmare cause I know the pain and failure of my mind and body.

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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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.

Sponsored Content

Yet another day where I am seeing propaganda posts about the realities of "other people". I can say it's very much a thing about controlling the masses through fear and distraction much as Karl Marx described. While South Park jokingly shows how well we have ads hidden in our news I do occasionally fall for the click bait phenomenon. Cracked! for one just did another article trying to address how misinformed people are about food assistance programs inside of a general poor people myths column.

Rather I'd like to explain to anyone in the universe who actually reads my personal blog here how being on assistance works for me. At first glance I am a republican's nightmare, a lifelong food assistance user. Except I did not set out to be that way. The social security system assumes that SNAP will provide a food subsidy to those on disability which is for the most part a permanent status. Yet food stamps is a state program and though it has to bend it's will to the government overlord it is not actually designed for the disabled. Every six months they require a review process meaning new copies of data including seeing into your bank account/social security records. While it annoys the hell out of us lifers since nothing ever has changed it does catch people who do abuse the system!

The most horrifying thing I ever heard from a classmate in college was that they saw a friend of a friend use her food stamps for Slurpees and candy every month, in fact she openly bragged about it. While I won't delve into the control what they buy debate, the problem was that she was a dependent student. Her parents paid tuition, her car, her rental home and a few thousand dollars in cash for fun every month. She got food stamps by lying and saying that she was an independent student. Apparently this wasn't a single case either.  Around the time I was becoming seriously disabled the State of Michigan issued a rule that students over 18 years old were banned from receiving benefits because of this. I myself was only allowed to continue on because I also gained disabled status which overruled the student contention.

Problems with food stamps don't end there. I've also been propositioned by others to buy their stamps  with cash or even had people wonder if I wouldn't sell mine. If you truly qualify then you need these benefits. Trading them for cash would be the last thing on your mind. Anyone wondering at this point about my opinion on the drug testing, I say "bring it on"! The problem with that is that the programs which have launched have wasted waaaaaaaay more money than sustainable for such a small result. This probably is varied depending on the state of course. Areas with high drug use and related crime would probably get more bang for their buck.

So if someone can agree with me that some people need assistance and that we want them to be supported then the next question is probably worrying what they are buying. I can certainly tell you that when I buy steaks it is cheap cuts under 5$ a piece. For the most part I have to stretch my small sum into 30 days of meals. This means I buy whatever proteins are on sale and from the least expensive store possible. Trader Joe's has been a new discovery for me because I have food allergies and they provide such safe qualities. They have amazingly priced single meals and sides. Essentially I would say a 2$ complete meal was built for people who only have food assistance.

When I do have excess, almost never, it goes into buying non perishable staples to fill my pantry. Having a pantry really helps when you can't make a meal otherwise. The true is however than I qualify for so little that for two people there is never enough. So I am certainly living like no king. The truth of food stamps is that "it is only expected to cover 30% of a monthly diet". This is why people constantly fail the food stamp challenge. If anyone you know seems to be living like a king on assistance then they probably don't deserve what they have.

Or they are Cartman who steals the skin off of other people's fried chicken.... then Kenny cries.

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.

Ferengi Acquisitions

Fast food is bad for us in so many ways. Recently it has become a major hazard. My major episodes of abdominal distress have finally been nailed to a single allergen. It took some home cooking to finally out the culprit, Soy. Horribly enough its in about everything. Vegetable oil is entirely soy these days which means every other restaurant uses it. I am happy at least to find a strong connection between all these supposedly unconnected foods.

As a review from my last message post I have withdrawn from Neurological care for the time being. I saw someone at the new doctors office and it was disastrous. She put me into a panic attack with all her negative actions. Its a good farewell still since the previous practice who has seen me for over three years established the problem was primarily autoimmune/rheumatoid. The appointment with the rheumatologist went quite well. Sadly she can't do much more until I enter a flare-up again. I was expecting it this month but only a few phenomenon have appeared.

University has trailed on as well. I am set to graduate in May though my last class bleeds over into July. I am planning to complete application to another graduate program which has me all skittish with worry again. A flare would certainly interfere but in a way it also needs to happen. My hematologist has stabled my blood levels enough that I don't require infusion treatment. I do wonder if a new food item I picked up high in micro iron might have been helping. Certainly my thyroid dosage increase has gone well.

Back to the changes in my care, it is frightening since I know SSI review is dependent on my continued treatment efforts. Its true I still have Dystonia but it has become quite slight an occurrence since I focused on lifestyle and diet changes. Only the fasciculations seem to occur now which is not too disabiling. My digestion and back problems on the other hand are what is socially crippling.

The chiropractor has once again reset my hip but the nerve to my right leg and bladder are irritated. The cold I just finished has given me weeks of incontinence. Otherwise its just some burning muscle pain now that the hips seem to have pressure off the nerve column.

I also took a day to go register my sister at the community college. She still has to follow through on completing her fafsa and selecting the exact program plan. I have a inclination however she will stick with the selection I made for her under the arts format to avoid social triggers and keep her in subjects she has confidence it. My age must have been showing too because a professor took me for a substitute and greeted me. Gave me a chuckle!

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.

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?

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.

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!

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.

Pass the Cortical Stimulator

My recent MRI's much to my happiness did not reveal a large bowl of Soup rolling around in my head. With two spots on the brain and heavy damage to my cervical spine there is proof of the legitimacy of my symptoms. Unfortunately diagnosis does not come as easy as one scan.

Soon I will be having my second Lupus ANA screening. That will be followed by some evoked potential and nerve path testing.

Most surprising of all the tests done so far was the amount of foreign bodies in my blood. So off to a oncologist I will go knowing that my maternal genetics include a predisposition to Luekemia. Still today I am walking, talking and continuing my final few semesters of a bachelors degree.

Dreaming the future still

So my dunce cap came in pink today. My grand score was 88 IQ which is a far cry from the 120 I got less than ten years ago. It is nice to see that despite my insistence on keeping my chin up and doing my best there is a marked difference in my performance.

I have been thinking over my life goals since I began getting Dystonia fits and seizures again post surgery. My dreams are adapting surprisingly well to everything. Things I wanted to accomplish are separating from what I need to accomplish for myself.

I still need for example to be a homeowner and earn a masters degree to feel proud of myself. I want a dog which is a nice consolation since I have begun to fall back from the idea of raising children. So let's hope my 88 IQ won't hold me back from being the person I want to be.