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. 

"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.

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.

Fandoms and Mental Health

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

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

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

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

Born to what now?

You know my hematologist's office seems to think I am special because I can walk and talk when I have a hemocrit of three. For those of you not in the medical profession anything under eight is severe (a.k.a. how are you not dead? Are you stabbed?) anemia. Mind you I've been riding a fifteen for some time now, after a few years of regular iron transfusions. I have a lot of unanswered questions about my health and certain events when I was younger. Some of these are questions for myself and others about things outside of my control.

Today I actually answered one of them. Did my severe Anemia ever almost kill me? The answer is actually, yes. While I personally believe it all started with the hemorrhage I had in a girls bathroom in seventh grade, it wasn't until high school when my thyroid disease kicked in hard that I began to be unable to replace my blood volume. So there I was mid-cardio on a starvation diet when I experienced what I had thought was a stroke. My arms and legs went numb and I became temporarily blind. I believe it lasted about five minutes before my sight returned. I just sat in silence scared out of my wits, but I could still hear so I knew I wasn't dead.

Apparently the term for this is "greyout" and it's number one cause is shock from blood volume loss. It was also in these last years of high school that I began my do anything for spare change campaign so that I could eat at least one meal a day. My freshman year was spent eating notebook paper to calm the wrenching feeling. I have serious food control issues today, and get panicky when a supply runs low. Controlling food was also something my parents did at home as well. Though they didn't do it maliciously, they just expected me from age six and on to figure out someway to eat for myself, unless it was a special occasion.

I think for the most part with medical problems I thought I was being a hero (i.e. John Wayne) by grinning and bearing it. There was also the childish part for sometime which was a fear of needles.I learned to pass that by taking what I call control of the situation, by watching the needle. Yet one has to recall that I had years of medical procedures forced on me. Now a few were necessary but I was more often than not, handled poorly. Even as a baby I was used as a guinea pig for nurses and new mothers to train on because of my size. "Large baby is a safe baby", mind you I had been allergic to my mother and fighting off her antibodies for nine months resulting in jaundice. I guess that makes needles my enemy from day one.

It became a circus however about my mouth after the car hit me in 1995. In fact I creep out my current dentist because I can almost sleep while they work on me. What can I say I got used to needles, sharps, drills and contraptions in my mouth. Indeed it was my original dentist who told me he saw signs of a heart condition in my gumline. Of course no one wants to believe that young people can have serious illnesses. As much as writing out all the medical woes and dangers that befell me would be cathartic its also far to negative to fully invest in, so moving on?

What I find my mind questions now is how and when my disabling condition really started. I think that will probably become clearer when a strict diagnosis can be made. Thus far we still only have a categorical one. Ankylosing spondylitis however, has peeked it's way to the top of the list thanks to my new eye syndrome. God bless lab verifiable symptoms. Yet I've had problems my whole life, are we really looking in the right spot. I mean it's taken so long I almost wonder if I am the hindrance. There are a few nonlinear occurrences that could be a cause, or at least maybe I need to use them to separate out my symptom timeline. What really put me on this path?

• The car accident in 1995 that may have left a TBI and spinal degeneration?
• The possible lyme infection I got when I was twelve after a girl scout camping trip?
• The nerve pain/leg dystonia I started getting when I was fifteen years old?
• The major dog bite I hid that could have led to sepsis?
• The second car accident where I developed a blood mass in my leg and cellulitis?
• The mild gangrene I got when I was nineteen and self cared?
• A drug induced reaction from an FDA approval pending medication?
• A pre-existing condition triggered by an environmental stimulant?
• Or a genetic disorder taking hold at a natural time?

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.

A Touch of the Phage

There is only so long a person can go before some spots become bothersome. At the moment about 25% of my body is covered in sores and only 5% of that is appropriate for a general website. Indeed I joked with my husband today that perhaps the most people ever have seen my rear today and not to mention they took pictures. No worries folks he is not jealous since all of them were in lab coats. After a long wait I was able to get into a local dermatologist to identify my "rash". I have always had typical allergic rashes or hives but never anything lasting over 48 hours. For some reason I thought an expert would know right away what was wrong with me on site. Yet the physician assistant wasn't sure until she had see all 25%. My bottom is by far the worst and craggliest of all at the moment, though to be fair it's more my thigh than the buttocks proper.

Having a hole punched through my arm wasn't something I had expected. Indeed I found myself a little concerned when I saw one of the trays readied with anesthetic's a fresh scalpel and some other accouterments. When I think of a skin biopsy I really am thinking a needle puncture or a slice. To be fair the first thing they did was a scraping of the fresh sores on that same arm. I have a feeling no fungus was present because they immediately threw out the plausibility that it could just be some wacky fungal infection. I was sure it couldn't be fungus since I had already tried a specialized cream without improvement.

I mentioned that I was under diagnosis for autoimmunity and the doctor got more excited. I asked for a biopsy which ends with said hole in my arm that required two sutures. Hearing that they might play a key role in solving my mystery diagnosis went a long way. Of course the doctor also wants his own copies of my autoimmune testing now so he can try and break the case. I promised to bring along copies to my next visit of those from the Beaumont hospital system.

Standing up for myself in social situations has really paid off recently. It also has it's downfalls as my husband had to lead me away from a manager I was going to correct after he had been rude to us...and his coworker had found our product in less than two minutes right where it should have been. I wasn't about to interrupt his phone call to do it however which the husband used to urge me away. Correcting someone on their courtesy isn't a great use of my limited energy. This is where I mention the spoon theory came up recently again in conversation. Sometimes I have to remind myself since when I am feeling well I overspend and set myself up for failure come a symptomatic week.

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.

Can't Get Enough of Those Ferengi Trade Laws

Finally the mobile heart monitor is done with. I had the bad luck to not only be allergic to the adhesive sensor pads but also experience a region wide power blackout which turned of the monitor in the last few days. Needless to say my followup with the cardiologist was underwhelming as well. I've got scars from the monitor and nothing to show for it. The only posed answer for my tachycardia event is a environmental trigger. Thinking of it now that jerk better not have been saying he thought I was a drug user. They always due a full workup for that whenever I show up shaking, vomiting and experiencing neurological symptoms. Being on record as having dystonia at least has helped with that particular ageism stereotype. I didn't think a possible heart attack would lead some one to presume the same thing. Let's be real of course what he thought was that my thyroid caused it. So of course I was sent to the endocrinologist who said absolutely not. A guess of mine is perhaps I accidentally took two of my thyroid prescription since it resembles my lisinopril tablet. Except I am sure that didn't happen. Something that was also alluded too is perhaps my heart is working too well. This I assume is his way of reconfirming my ectopic beats without actually telling me I have them because I might freak out and overreact. Surprise I already knew about them. 

I also just had the followup with my opthalmologist who I was sure would find grave news. I've been getting ocular migraine and headaches so bad that I can't concentrate more than ten minutes at a time to do schoolwork. Somehow I am hanging on in this quarters classes even with over the top expectations from one of my teachers and too similar courses. So my field of vision test was about the same and my nerve damage was as well but they were troubled that it almost seemed to be healing. I assume whatever was damaging it was under control then. When I mentioned dry eye he insisted on punctal plugs and did the worst job explaining them before he got them in my eyes. They don't seem to be helping or harming. The problem is still my eyes not making their own moisture. Doctors are beginning to look at me strange when I am upset over a non diagnosis. Of course these are the auxiliary specialists who don't know that I am a chronic sufferer of a insidious disease process. 

I do feel a bit silly as well because I recall in my behavioral science coursework going over the psychological paradigm of "the sick role". It would be very easy to guilt myself into believing that as some people have told me I am a lair hanging on to what makes me special. Trust me I would much rather have back the freedom of eating, going and staying anywhere I want without extensive planning. Then again I am a bit afraid of what more responsibility would return with increased functionality. Now of course when ever I get into one of these self doubting and self hating modes something always happens. Today it was fecal incontinence again which at least I am able to bodily clean up myself. What I am learning is to not put stock in the transient symptom processes because that's what always produces the null result. The stable problems like chronic dehydratedness, intestinal/bladder control, inflammation/rash, pain, dystonic storms, severe anemia, food allergy with malabsorption and neurological crisis are all reliable. That reminds me I am supposed to choose a new gastroenterologist which no doubt means a colonoscopy this time. I never did call back about the scar tissue they collected from my lower esophagus to test under microscope. Since the doctor was so rude I just didn't want to and I doubt my keeping off only 30lbs the past year would impress him either. This morning is my appointment with the hematologist for the next iv infusion which hopefully still wont require whole blood as well.

Torrential Rain on Mars

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

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

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

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