Friday, June 30, 2017

Not comparable.

In this world today, so many people claim to be oh so super liberal, they passionately assert how important it is for social minorities; ethnic and religious groups, LGBT folks, to be accepted and respected. That's good, yes... but what about when it comes to medicine. To medical patients. To medical zebras? We are a minority in the health field. Due to this, we are getting badly discriminated against and treated badly, suffering with poor life quality, and even dying, often needlessly. If that's not an example of being tragically marginalized, then what is. Think about it. How would you feel if you were really sick, but because you weren't really sick in a typical way, your symptoms, your illness' serious and debilitating manifestations don't count - and thus don't count to receive the right help, your need for proper treatment doesn't count - because you're "Not comparable."

In my current situation, being compared to horseys once again is detrimental to me. On top of other major aspects to my illness which I have to battle on a daily basis, I am being dragged down so badly by this gallbladder and GI functioning issue. I have done all I can, I've been suffering for months, at first with some improvement with my own at home hard work - but now it's getting to a point where I just medical treatment. I think I need my gallbladder out. I feel this is so (or, something similar is wrong - a block in my GI tract in that region, etc.) and it is beyond my ability to do something about it. But I'm stuck on a long waiting list for a GI doctor and I can only hope that once I get to him/her, they'll listen, and understand that I'm a zebra, and that I really need help. I can also only hope that I won't have some kind of emergency before that time, though this is possible. So many times before it has happened this way for me. It's russian roulette. This time though, I depend on really getting help. I even made my internist aware to a point where we have a back up that if i am not listened to by a GI, he may have to intervene, and help me seek out a second opinion somehow.

Being given tests that don't help me prove it needs out, is so unhelpful. It only further "disproves" something that badly needs to be proven, if this makes any sense. It's frustrating to be more in the know" that those who basically have power over me, in terms of decisions on things like testing. I know that alkaline phosphatase is not a good indicator of gallbladder function for me. Because I'm a genetic anomaly a bit, like zebras are, I'm practically a dwarf (petite) with brittle bones (bone density sparse in other words) and GI absorption issues. My ALP baseline is probably lowered. ALP is lowered in people like me. But that's empirical .. we don't have much in the way of formal proof. How unhelpful. So they can't factor things like this in, and as usual, I slip through the cracks because what my body does isn't well comparable to what the "usual" bodies do. Health problems. Not comparable to textbook ranges. How unsettling is that? What do you think that can cause? Not being believed. Not good .. 

This is how we "unicorn zebras" have various detrimental health problems which slip through the cracks of recognition. It is beyond frustrating, but more important, angering and exasperating to think about, because it can be dangerous. Textbook ranges are created, and they're dangerously "boxed in", not taking into account that some unusual body types and unusual conditions will not be so comparable to these ranges. The actions within these more unusually running bodies will diverge. Their base in one of a different "make up", and so their ranges will be divergent. 

It's so rough to be this person. To be "physically divergent" because essentially, you may fall through on ability to access safe and proper medical care to address health problems. It's like I said in "Special order cookie" .. and when people are served with business in mind, the more unusual people (not a majority) will not considered not very "viable" customers. It is unfair, and it is discrimination, but somehow it's all acceptable within the functions of the healthcare biz. Because you're that unusual cookie, the information tables don't even fit your body type so well...because research in which produced those information tables was tailored to the "majority", the horses, not the zebras. How safe is that? Not too safe .. 

I have fallen through the cracks over and over, since childhood, due to being compared to horses. I have rarely had health problems which needed addressing actually be addressed properly by medical services, other than in an emergency...and when that's happened, it's usually been super traumatizing, and can be dangerous. It takes while to find out what is happening to me and how to help, because I present so unusually of course. I've often had to be the one to try to figure it out, and yes, I have had a few doctors who have been supportive of me, who have been allies, who do admit that I am very zebra but clearly unwell and in need of help. 

I am at least grateful for these doctors, and because of them believing me more so, even when they don't fully understand me (well it is not obvious that I am unwell, too) I have finally been able to access some services, ie; Help with prescribing meds and getting weekly hydration. These things do not cure me, or fully address my real issues, and far from it - but they keep me safer and keep my quality of life from being at a near zero. Without these few doctors who do believe and support me more, I wouldn't have been able to "keep grip" on the cliffs' edge I have scarily found myself clinging to a few times before. 

I should stress that ultimately, it is not the doctors' fault a much as it is this messed up medical systems, which ultimately prioritize business over people. However, many doctors will engage in unfair, abusive and "zebraphobic" behaviours (read about "zebraphobia" here) such as blame the "rare" patient, being negligent and abusive, refusing tests, referrals, meds, calling in psychiatry etc.  These doctors are scared to admit the truth; that they cannot do more for this genuinely sick patient, because they're both not allowed to and because they don't understand how to. They have their egos involved in it, and that is their primary concern, themselves. In this, they lack compassion. However, some braver, more empathic and more humble doctors will admit that the patient is in need of help, albeit difficult within the limits of the current medical systems, and they try their best to help them. We must acknowledge these doctors for sure. But even still, we're at risk. 

I'm at great risk to fall, and what if, one day, I really do. Something really major happens. I am at risk and I know this. I wish I didn't know what I do know, about my condition. What if one day it's so bad I can't be my own advocate anymore? What if I'm so ill I'm unable to communicate and think properly? I feel like "I only got me"...So what do I do if I don't have me? How would you like to be in this position? Since things have become more profound for me, and I'm really disabled now due to progression of my illness (which couldn't be prevented due to the above reasons) I could realistically end up in that position now or in the near future. Especially if I cannot find a way to access the help I need in the eastern united states. 

Sadly, and even more sadly justifiably, I've become entirely skeptical and cynical, that I'll even have a dangerous health issue recognized properly and/or on time. Again, I've ended up having to somehow play guessing games and be my own "witch doctor" to turn around serious, concerning and sometimes scary flares, incidences that could be related to several things like infection (my body reacts weird to those too), immune system reactions, nervous system reactions, injury reactions, etc..

But I can't do that in a major emergency though. I can't be my own paramedic if I were to be completely out. I have been, in the past, my own "paramedic" at times when I've been close to "out" but not quite there. It was operating from a "better not reach 'there'" adrenalin state. It has been so traumatic. I do not wish this experience on my worst enemy .. 

It's a game of russian roulette for me. I have to hold hope that the right fluke might happen to help me out and have guardian angels watching my back. I wish I didn't have to live this way. I think I'm lucky to be alive, and I have to be a woman of faith in this situation, or I really could not go on. I have to believe I am somehow being protected. 

Because of this, because of being that "unicorn zebra" type, and being met with not only lack of help but at times (especially in the past) judgement, neglect, and sometimes full on abusive and cruelty, I I am now "battered." Currently I live in very severe pain with very compromised energy, physical strength and mobility. I have suffered through a series of "stroke like" autonomic episodes for in which I had to pretty well help myself, get extra fluids and electrolytes and my meds, call family friends to help, and mostly ail from home. Each of those episodes somehow damaged and weakened me more, and yet still, no formal testing and/or proof as to why. 

I am now very disabled and compromised, at 31 years of age. I'm life limited, weakened, in way more severe pain than I even look. I miss out on a lot. Doing little things, even that I enjoy, takes massive effort to do without hurting myself. Using the sports tape to keep my spine together has helped the most, though lately, I've begun reacting to it. I am waiting for a new medication to kick in and hopefully work, and I'm waiting receipt of stuff we ordered which is marketed as "hypoallergenic." We even bought a medical tape barrier from Rexall, which we'll try to use on my skin first. We'll see if it works after my skin heals up a bit.

Even after all my efforts, the special diet, supplements, herbs, tape and bracing, etc.. I'm not entirely sure how to really turn this around. At least enough to get stable, to have some reasonable quality of life, to not be so severely inhibited by pain, fatigue, risk of injury, etc.. I do get out for short bits if and when I can, I have pushed hard to do that and "soak it in" - but it's very limited. The only thing worse would be being totally housebound ... and some of us are, it's brutal. I am currently in the second to worst category of "severity" that one would be in, and it hurts way more than I can find words for. I am in such grief about it. 

I also want to emphasize that I am not the only one. 

Money stands in my way from being able to see those very few specialists who can actually help me. If I weren't such a zebra, if my body weren't so weird, it wouldn't be like this. I could get medical care in my own country. So yes, it blows, it's brutal being a unicorn zebra. Yes, I would give anything to just be a physical "horsey" with physical "horsey" (typical) health issues, that are much more easily "help-able" in my own back yard, without requiring tons of cash I don't have, to ultimately save my life. I hope that one day it'll change for people like me, because it needs to. I hope the healthcare field will hone needed finances and zoom out, change attitudes, think bigger, think outside the box, advance, research etc. In order to be able to serve all people, not just "majorities." 

 #zebra #whatiwishididntknow#beingawarecansuck #myproblemsdontexistbecausetheyrenottypical#allthewaytodeathright #stuffthis #discrimination #minority #marginalized #ehlersdanlossyndrome #dysautonomia #raredisease 

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