Non-compliance versus Poor Case management

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

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

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

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

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

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

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.

If I were a Blacksmith I'd be loaded!

Well it has happened. For those of you observing the patterns of my life, we have been overdue for a hospitalization this past year and a half. First and foremost I think I should thank the norovirus without who I would not have gone into such serious crisis that my underlying disease was caught. As it were, my fella's went on their typical Chicago vacation this year. I had thrown up once before they left and put it up to food poisoning. Since raising my metformin I am very sensitive to food allergies and GERD attacks. Turns out once I was in the house alone my food poisoning turned into a day and then three days. By the time it hit a week of constant diarrhea and a possible heart attack I made sure someone got me to the hospital.

It was the first time I've ever seen blood in my urine. That was pretty scary a thing. So once they started filling me with what ended up being 70 Liters of saline iv solution over a 3-day stay they found I was having renal insufficiency due to a serious lower and upper UTI. That would be all fine and dandy but I still was not rebounding. My bloodwork found that I was very seriously high on Ferritin among other things. So once the fluids and antibiotics levelled out the rest of me what was underneath was a surprise. I have Hemochromatosis. most likely type 3- the Transferrin receptor mutation.

I have yet to have my follow ups with specialists but for the time being now I have started the Hemochromatosis diet. I will see my primary care doctor this week and what a anvil to lay on him. Both he and my endocrinologist have been wondering about odd changes in my blood levels recently. I myself was far more terrified by the psychiatric angle. I have at least an identified enemy now.

What was interesting is that I also cleaned out my old medical binder this week. There was a lot of old information that pointed to this same diagnosis. Old blood work with the cardinal raised Hgb, or the symptom clusters which matched diet changes that could have aggravated the symptoms. Heck I even need to rethink my Wheat allergy as it may have just been a reaction to "iron-enriched wheat".

Thus far I've only eaten too much Iron according to the diet once. I did get my usual stomach cramps that I had identified as a wheat and soy problem. It's so strange that all my symptoms and experiences really do fit into this one niche. I'm not sure my head is completely wrapped around that yet.

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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Fandoms and Mental Health

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

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

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

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

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.

Only in Sad Holonovels...

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

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

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

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

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

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

Klingon Food is Organic

It rather amazes me the things you don't notice about yourself when your sick. Very easy to focus only on how you feel and not what you look like. I've had another double round of Venofer and at the two week mark my skin has doubled in skin darkness. Unfortunately the headaches aren't entirely gone but what has been most concerting this week is two sleep paralysis events. Luckily today I was in atonia only partially and able to cover my eyes before the hallucination fully formed. It's also been the post-rem variety which is new to me. The past events that I recall were all the hypnagogic variety. There are good sides to this though because I have found two trigger foods for severe nightmares, cheese and sugar. As for my tachycardia which kept me over night at the local hospital and under thirty day monitoring, blame has not been assigned except perhaps some sort of unknown environmental trigger.

It is my skin recently which has been showing distress. Besides light sensitivity I've been worried about the condition of my scalp which may lead to hair loss. I even had my husband search for a bald spot as well as check myself with my brother in law's "balding" mirror. School has been incredibly stressful with a too serious teacher and tighter end of week deadlines. Just now I am on my third day of a week long break before the next quarter starts. I'm also looking forward to Halloween for which I assembled an elaborate costume. I also went ahead and finally purchased a star trek uniform this year. Hopefully the size will be big enough but now I feel guilty for having two costumes available. Since I'm a bit of a Trekkie I feel I'll have to build a background for my character which I already did with a cardassian character. So my TNG-era science officer will have some decent rank and be focused on xenoanthropology...not to far from what I've actually studied. I'm tempted to buy accessories which is just silly but I can make due with some old electronics I have that with a few stickers and a charge would light up like tricorders.

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 Most Girl Part of Me

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

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

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

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

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

You Green-Blooded Son of a Bitch!

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

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

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

Defensive Maneuver Riker Theta

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

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

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."

Seizure like a boss

You know it's wonderful having good days where a headache is the biggest problem I face. It's even better having a great week but then the wall hits you.

Since my gallbladder removal I've had two large gallstone attacks. I expect to be symptomatic for at least a year.

My neurological problems had gone fairly silent. A little tremor here and there but nothing major. I finished watching most of the Star Trek series and began some silly web hobbies.

Then I woke up unable to speak with vertigo do bad I couldn't walk or sleep. This was a major factor in my original hospitalization. Luckily nausea wasn't apart of this day so I was able to wait it out. My sleep has become heavily disrupted again. Today I happened to oversleep by four hours.

The seizures have showed up again. Depending on severity the symptoms are slightly different. For my drop attacks I usually just get weak legged and have repetitious movements or words. Full episodes are much more elaborate.

I usually don't have time to notice small changes. The most obvious factor is a feeling of panic followed by a overwhelming tiredness. At that point I usually notice some nausea and tremor. If I don't get to a bed in a few minutes I would fall and hurt myself so you'll often see me book it for the bedroom grasping the walls as I go. Once it starts I have the strangest feeling of a traveling contraction/pressure in my brain. My jaw will often ache and lock shut. Shuddering and writhing begins mostly on one side but as the episode progresses will cycle through the whole body. About ten minutes into the spasms I lose my ability to communicate. I have yet to find if it is my voice box or the speech center of my brain.

My longest seizure episode lasted about four hours but have have been aftershocks following a single occurrence. During this time I couldn't speak for about two hours after. My voice came back very slowly like a whisper. Eventually I was at about half volume which was good enough for me.
After a seizure I am always tired and my body is often dead weight.

Today I had the warning signs which was why I'm posting. Nothing has happened yet but I've been known to have warning signs up to three days before a occurrence. This no doubt commands the rest of my week, like a boss.

Twas the night before surgery and all through my guts

Excitement is only now starting to hit me about my Cholesectomy procedure tomorrow morning. It took about eight different professionals to simply register me and coorelate information that was already on file.

I don't envy the surgeon who will be poking around in me tomorrow. I have a feeling he will find a complication since this will be my first invasive surgery. Another reason I believe this is my difficulty with keeping my fluids up. The pain has also gained friends in other parts of my abdomen.

Oh and our dirty word lets me only pay half price up front. You know thousands of dollars.... :(

Beef Wellington Rare with a side of Vicoadin

As far as Gallbladder disease goes it works on a scale like anything else. Some people have stones form but never have any symptoms. Some people may only experience a gallstone attack if they eat excessively fatty foods. For myself I am neither of these. Since my largest attack in March 2011 I have not had a single day go by without a Gallbladder attack.

If your wondering what is so bad about some indigestion, think again. A Gallstone attack is more similar to food poisoning except that your body is unable to expel the problem. The average symptoms are nausea, a fever over 100 degrees and severely debilitating pain in the right upper abdomen. Your body is also going into shock so you may experience a panic attack and even heart trouble not unlike that of a actual heart attack.

Doctors tend to avoid pressuring people into surgery to remove it because it may be a small one time blockage which never occurs again. In my own case I have been highly symptomatic since early 2006 but a thorough look into my pediatric records uncovered a early diagnosis that wasn't followed up because I hadn't show anymore symptoms at that time. After my stroke in March 2011 I was sent home and told to stay on a broth diet until the inflammation went down. This was no problem since a side effect of my neurological medicine was anorexia. In fact coupled with the pain of my acute kidney failure my family had to force me to eat again. In the span of 3 months I had dropped about sixty pounds of weight. The best diet my family could get me to keep was a child's size bowl of rice crispies cereal in the morning and a single pudding in the afternoon.

Eventually my body adapted to the medications and surrendered. That wasn't until after at least five months had passed of being bedridden and unable to sleep more than two hours at a time.

Around the time my weight was lowest at a grand total of seventy pounds lost I began eating whole meals with a Vicoadin. The best time of this past year was on a non fat diet of just skim yogurt, a single pop tart and a Vicoadin laced dinner.

I even tried the all fruit diet that is a supposed cure all. It did not make a difference. Only recently has the hospital finally agreed to do my actual surgery. It has taken almost a year of return visits for a heart attack scare, more gallbladder attacks and a long standing kidney infection which has severely dehydrated me multiple occasions.

My second to last visit had been in June thanks to heat stroke and a possible heart attack that my county clinic doctor had noticed. Since then I had not visited a hospital until this last week. Testing revealed a infection and large solid stones that require surgical removal. The only true obstacle now remains the same as it was before. Insurance.

Reimbursement seems to be a dirty word at hospitals because they hate to be paid at someone else's convenience. The SSI office however is more than happy to make them wait. Meanwhile I have to hold onto my last bottle of Vicoadin so that I can eat at all. Even water can send me into a fit of nausea. Yet the hospital is reluctant because of that damn dirty word.

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.