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I'm not difficult just passionate about my health

My last ER visit inspired this blog. It is interesting to me how advocating and educating yourself on your illness, considers you to be a difficult patient. I have come to realize that doctors are intimidated by a patient like me that don't just sit around and "woe is me" mentality. I don't just rely on their expertise nor do I always take their advice so then I'm combative, not cooperative and difficult patient. No one deserves to feel that way. I would think a doctor would be ecstatic that you are doing your own homework and research on how you can live a peaceful life at least, but no... I get the "I know too much" or "why are you here if you know what to do" it makes someone like me not want to go to the hospital. I've told my husband several times don't take me unless I have stopped breathing at this point. Why keep going through the humiliation?! It doesn't just happen to the chronically illness community, it happens big time to POC. I can't keep being quiet about it. I know my purpose is to advocate not just for the sick but all people and women. POC and women I see are mainly affecting by this so when will this end?! Any doctors that are reading this blog post right now, please don't think we are trying to tell you your job. We know our bodies more than anything and because of my awareness doesn't mean I should be treated inhumanely at times. Taking an oath also mean respecting your fellow man no matter race, creed and or religion, so please honor the oath. Keep fighting!! You matter!!

Ana 🦓💪🏾💖♿ #EhlersDanlosSyndrome #Dystonia #lifeonwheels #LifeofanEDSerwomanofcolor #Advocacy #RareDiseases #EDSAwareness #Depression #Anxiety #fightforyourrightswhenyouhavethefighttodoso


Struggling today... #AnxietyDisorder #ObsessiveCompulsiveDisorder #Depression #HighlysensitivePerson

Today I may no longer be employed. My battles with crippling anxiety and the fear and inability to express my needs for accommodations in the workplace, coupled with an ill-informed understanding of what my rights are (let alone feeling deserving of such requests) have led to my inability to even show up. My employers have tried to be patient with me through months of me struggling and I am grateful to them for that, but I can not show up and fight anymore through the very real struggles that are simply beyond my control. They don’t know me prior to September when I started this job, in the beginning stages of my cycle and without knowledge that I’m not always this bad. I’m not only this bad. I need to get real help. I need the time to figure out what that looks like. I have an appointment Monday with a social worker and a new PCP. I fear that my lack of speaking up before it got this bad, my succumbing to the fear and staying silent in hopes I could get through it alone, the stupidity of knowing damn well that’s not how this works, and getting to the paralysis point before making real moves in the right direction, may have severely damaged my relationship with my coworkers and employer. I lay that down for now, right here. It will have to wait for resolve....(and fucking shit, I hate waiting and not knowing, this is crazy-making...) I need to take it one thing at a time. What is done is done....and all the other fucking mantras that are surprisingly helping me right now (this is a nice change from my usually-cynical demeanor...).
Though I am overwhelmed with fear for what comes next (and I’m not clear on whether I was fired, quit by default for not going in since Monday, or what the actual outcome of my self-defeat will result in yet...) I am hopeful that I can allow myself the grace, compassion and patience, that I so don’t feel deserving of, to address the causes of my current situation without further deteriorating into the hateful thoughts, served up sloppy with seconds, by depression and anxiety. I have to know (be reminded of) that I am not who I am at my hardest times or in my worst ideations of self. I tell others this very thing when they’re in it.....and I’m going to attempt to apply it now, to myself, because I can’t continue to say it if I’m a hypocrite who can’t apply it....I’m calling myself out....(I’m so mad at myself for calling myself out and want to kick myself’s ass right now....)
Wish me luck. Self love is not my strongest trait, but I feel like that is changing. At least, I’m working on it. Always working on it....on all of the things. Thanks, Mighty! I feel a lot less alone in it. It helps to have a venue for which to lay our woes. ##fightforyourrightswhenyouhavethefighttodoso ##imnotalwaysstrongenough #Takingadvantageofamomentoffearlessness #Whoknewhashtagsweresoaddictive ##postthedamnthingalreadyandgofindahug