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.

Long Gaps when Progress was made

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

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

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

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

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

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

"The Month After You", a catchy title for a book, eh?

Well that moment of triumph which punctuated what happened was not in fact a honest ending. I feel like I need to go back and write a whole book report on all of this. The hospital was so sure of what was wrong with me but then again most symptoms overlap or are generic. That's just how the body in fact works. What has happened since is that my hemochromatosis diet along with working kidneys pumping out heavy metals has rid me of supposedly half my excess iron. Along with that the new symptoms are shedding off like a costume left on too long. Tearing away in long shreds. So my most trusted specialist physician has held up the stop sign on all of this.

What I am coming back too is familiar at least but the haze in between the two is easier running downhill this way, than up. Something I have never had seriously was depression. My blueness prior to this was always situational or at least reactionary. While my Iron loaded on however I found myself idealizing suicide. I could simply step in front of a cops gun or run the car into a wall. Instant off switch and out of my control. This is why I had finally checked into what mental health services were around me finally. It never occured to me that what was going wrong was physical. I thought maybe it was a weird aspect to my agoraphobia worsening.

So what did Iron poisoning take from me? My happiness, pieces of my willpower, my concentration, my sense of time, the use of my hands, my ability to dream and my relationship: good or bad with food. When it comes down to the exact moment I fear death like any normal person but I have in the past thought of suicidal ideation as the stupidest thing because you lose all your precious options. Something that terrifies me now is the knowledge that if I die my partner will more than 50% likely kill himself to follow me. That's an interesting panic inducing thought. Also a bit less selfish than the old one I had as a teenager about not trusting my cat to anyone else. Of course, the cat never said she wanted to die...

There were positive things from this experience though. I had for almost two months no sleep terrors or even nightmares. My dystonia also disappeared though it was simply replaced with shaking fits from hypoglycemia. Both of those are coming back now... but so are my amazing vivid dreams. The kind that inspire you and make you feel glee. Even if they turn out to be fantasies alone. Those are also the inspiration for my writing so hopefully that too will come back too.

Adult Wrapper for a Kid Size Candy

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

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

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

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

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

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

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

Adrift in Space

Ugh, is the best I can say for how I am feeling today. I've had a decent amount of medical appointments all of a sudden including one for my SSI CDR. Unfortunately since I knew it was coming I let my self meander and research the process ahead of time. My "worker" seemed nice on the phone but I can't shake the feeling that I am being pushed into a corner in order to invalidate my benefits. At this point in my life if they took away the health insurance I would be left at the mercy of the local hospital systems and barring that probably die slowly from my heart condition.

So one can imagine that having an anxiety condition doesn't help either when knowing this. Apparently it is highly unusual for someone to be sent for a consultative exam during a routine CDR. Mind you its my first review ever and I did have new information to report. Some of the conflicting information I am seeing on the web is that "a CE during a CDR means your original disability is no longer approved", "they need to confirm a second qualifying condition" or "they are simply looking for you to be non compliant and it means nothing in itself". Obviously having more than one qualifying condition is something they would need to know to keep a correct viewpoint of my status.

When I sent in the update I had at least four new conditions to report of which only two would be considered qualifying (on-top of my original approval list). My heart condition has taken me to an ER like five times this year so I would assume that has enough paperwork to appease them. I barely recall the exact way that the "worker" brought up the topic of having a CE, I wish I had gotten a firm answer from her on why it was necessary. The Mental Status exam could have gone much worse. It was embarrassingly close to my house yet I still found myself holding off a panic episode just over what this mystery appointment meant.

The consultant was actually quite funny and was able to calm me down. So the entire questionnaire lasted maybe 35-40 minutes. I think I surprised him however because when he was starting his goodbye speech I cut him off and said no I already had benefits... he had never heard of a CDR or at least had never been asked to consult for one. Hopefully telling him that did not screw up the entire process. I would think knowing someone has already passed muster once might have changed his opinion on at least two of the questions. ('Describe your disability'... "Which One?")

My mental health though after my mothers day panic attack and now preparing for this has definitely been bumpy. I find myself doing things which I can't seem to make agreeable to the rest of my self identity. When I am embarrassed by things I've done especially nostalgic things from my teens I feel the urge to either deny, destroy or cut them off. I don't know why but there are just things I enjoy where my brain goes on high alert and I can't calm down about because they don't fit together. In example I am watching a lot of goth you-tubers this past week after stumbling upon one I like. I can't make that part of me sit with the Metis rights or culture, let alone the aggravation of knowing that I physically can't afford the energy of dressing up in any fashion as well as if I did people might use that against me as proof I don't deserve help.

That is most certainly hyper-awareness and I would hope utter bunk to the reality of the world but who knows. The part of me that wants to look nice also wants to be thinner and therefore more able to get around. Yet underneath that is the inconsiderate, selfish and dangerous level of me that just go-go-goes because she never felt any consequences from it. One would think I am referring to drugs in this area but ironically substance abuse only happened in my life when I developed a narcotic dependency to legitimately prescribed medications. It's annoying in someways to know that I never really did anything to injure my own body but I see younger people and healthy people (like the consultant today) who don't know the feeling of a body they can no longer trust. I dare say having a body one couldn't use at all would still be worst then where I am.

Right now at least I feel depressed which I think is just a come down from how awful today was supposed to be, yet it wasn't.

Beta-zoid Blockers and the Lonely Hearted

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

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

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

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

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

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.

Does it have to be so interactive?

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

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

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

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

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

Just a Little Theta Radiation

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

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

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

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

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

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

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

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

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.

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.

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.

Be careful where you step in 10-Forward

I seem to be injury prone this month. I finally have a break from ongoing appointments to Doctors but now it seems there is an emergency everyday. On Monday I had a freak accident involving a sewing needle. I use the hand needles since I don't have a machine and had completely forgotten that one had dropped on the floor near my desk earlier that day. In the evening I turned and rose quickly out of my chair when I felt a pinch followed by a snap. I looked at my foot expecting to pull out that three inch monster only to find it wasn't there. That's when the tip fell to the floor and I realized it had gone into my fourth right toe and snapped off. It followed a diagonal line from the base of my toe pad straight through to just underneath the nail. Since it was then 2am I had no choice but to drive myself to the hospital with this silver barb under the skin trying to slip its way fully through. The ER doctors were extremely nice and took about 15 minutes after the prep to surgically remove the piece. It was just over two inches and the nurses were amazed. I only needed 2 stitches which will need to come out next week.

The tetanus shot hasn't really bothered me but the Kidney pain from my Venafer infusions has been worrisome. My sister Heather also gave me a cold which has raised my temperature to a bothersome level in the 100's. Tonight I gave my cat her annual bath and she had her first panic episode from it ever and went for my hands. She bite down on it hard on it enough to puncture the large vein for my thumb. My left hand was instantly bruised and running with blood. I truly don't blame her because this is the first time she has ever bit or scratched anyone. She'd also never growled before tonight. I was so shocked I took care of rinsing her before I tended to the blood. My left wrist is also sprained as of last week when I woke up with it in horrible pain. I assume that my sleeping on the floor and REM behavior disorder has something to do with this. My Fiancée can't handle the kicking and punching every night and I wanted to avoid giving him a cold. I could swear our living room couch shrunk because I can never get comfortable on it anymore.

I can't imagine what might happen next but my handicap license plate arrived the other day so I put it on myself. It's much easier than taking the Packard up and down. I did find some interesting news while at the hospital regarding my SSI case. Apparently they put on record that I have clinical depression though I've never been treated for it. My parents were both diagnosed that however in the late 1990's so I don't discount it as much as other cookie cutter labels. I do know that since the stroke-like episode in 2011 I have had genuine Panic Disorder & PTSD, which I admit talking to Ms. Hebert in my local area helped me understand it enough to deal with the condition as it happens. Still I would rather have a genuine diagnosis for my brain lesions and nuerological dysfunction than some happy pills any day. The next MRI is in December to which I assume there will be more lesions and hopefully a diagnosis. I am very much a John Proctor, my integrity means everything. In the words of Captain Kirk "You cant take my pain...I need my pain! My pain makes me who I am."

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.

Here's your dunce cap, free with purchase!

So there's about a month and a half left to my original disability claim process. Suddenly I am being called back for a last minute exam. I hadn't received the letter myself before my boyfriend came bursting into the room bubbling over with laughter and put the letter in front of me to read.

An IQ test. Strange request in some ways, making me doubt what they have found in my records already. The most logical explination is that they are going with the premise that no matter what physical limitations if I am as smart as Steven Hawking then it wouldn't matter whether I can stand, breathe, lift or walk. According to my therapist it is more likely an excuse to not only test intelligence but also redo the cognitive examination to see if I have gotten worse or better.

You know even anti-gravity controls could not help me much with my busted speech center and motor control. Sure I wouldn't have to lift my arms myself but what would it matter if I still couldn't grasp anything.

Along the lines of intelligence I have taken an IQ test before for fun and I know it's been administered to me in primary school. It would be a shame to score genius level since I'm sure that wouldn't do any good but as a pride booster might be nice. The real scare here would be getting anything under 90. Depending on how I'm feeling that day it could be the case. I've caught myself staring at pencils and trying to remember how to hold them to write or looking blankly at a math problem wondering how to read it.

These mind divets are really uncontrolable. For example in the previous cognitive exam I had only a few broken words until she asked me what my boyfriend did for a living and I couldn't answer her. Eventually I counted up from the jobs he had before I met him and came accross what he did now but that took 3 minutes of hard thought. My sister has taken this IQ test as well and told me to expect something around a 90 so that's what I will aim for.

Still I have to wonder do they think I'm lying or do they know something dreadful is looming in my records? Doctors have been hush,hush and need to know with me since this whole thing began.

Not all handshakes are greetings

Hand tremor was one of my first most obvious signs of neurological illness. Normally I would be grateful to my quirky shaking right arm but it honestly caused me more trouble than it brought solutions. Apparently there is simply no getting past the fact that there are too many junkies out there my age. Tremor being a big sign of withdrawal, I was turned away from care about fives times before my first grand mal seizure and rigidity episode.

That shaking hand even lead to the exact medication being prescribed for my stomach condition and tremor (Promethiazine and Zofran) which turned out to cause a stroke thanks to nueroleptic malignant syndrome. What trully got me hospitalized was the aftermath of my allergy and it's stroke. I can barely recall how bad it must have looked with me rigid on the gurney unable to speak my name clearly and my whole right side tremoring.

What seemed more interesting to the neurologist who saw me in the morning after was my lack of sensitivity in my face (Parkinson's masking), abnormal eye movement and almost no reflexes in my legs. The EEG was a complete trip. I already was experiencing vertigo and seeing flashing lights. During the test I recall seeing a lot of purple walls and more flashes. The hardest part was the light strobe test to which it had to be halted because I began to seizure.

That dirty word reimbursement kept me from receiving a followup with the neurologist so instead my county clinic doctor continued the Cogentin out until the point that I began to have a heart arrhythmia. A day after what turned out to be heat stroke she sent me into the ER because of a EKG she said was bad. The withdrawal from Cogentin was long and hard (future post discussion) but eventually I got to how I am today. Eating small portions, suffering but at least in tact.

My hand tremor is still there but seems to not affect me most of the day. I have instead developed into generalized dystonia which causes fits of myclonic activity. These are always worst in the morning, when I am over exhausted or if I am exposed to strobing lights. The Parkinson's and dystonia have both progressed again because of exposure this past week to nueroleptics. I doubt I will ever get any medical professional to work around the fact that I am allergic to more than half of the available drugs in all of pharmacology.

Dawn of a new Era

Most people would be surprised to know that there are certain things that medical professionals never take into account when they service the emended daily flow of Emergency room patients. Allergies for example are usually cut and dry against a single component and carry a decent patient history with them.

In the beginning of my journey into the land of handicap parking I had no history of such things. At 22 I found myself with a mysterious nagging gastrointestinal problem which was the first real thing in me to go south. Next came cognitive changes and sleep disruptions. Eventually I began getting tremor in my right arm and finally developed serious extrapyriamdal symptoms. Each problem got addressed seperatly. Psychiatrists were happy to label me and prescribe a free medication that was being tested in the open market. As for my gastrointestinal problems I was told it was acid reflux a simple matter to treat. Only a few hints remained unnoticed such as the tremor.

Yet wih my easily discountable problems this is exactly where no one considered that I carried a extreme and rare allergy. Each and every medication I was given contained nueroleptic qualities. So suddenly my bad health culminated this year in March with a stroke and hospital stay. Turns out my gastrointestinal problem was gallbladder disease and my new tremor belonged to a Extrapyramidal disease. My allergy to Nueroleptics required me to use Cogentin unt the Malignant Syndrome wore off.

Most research texts I can find say that Dystonia reactions to drugs disappear with the removal of that substance. This is not the case with myself however. It seems my genetic background is riddled with inherited abnormalities including a rare form of hereditary Dystonia and a familial Parkinson's Disease. By treating me with there limited knowledge of my condition I now have developed into a disease that wouldn't have affected me until I was fifty years old.

If this was Star Trek in any century Dr. McCoy would give me a magic pill or Dr. Crusher would resequence it out of my DNA. So for now indulge me with my fantasy of a better tommorow as I deal with disability in the today.