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.