I was diagnosed with fibromyalgia almost a decade ago. Over time, my symptoms changed, some even bizarre. Had an MRI done a few years ago (about2) , no lesions. Time continued, symptoms continued to change, making everyday life almost impossible. I have alllllll of the general symptoms along with the ....sorry cannot think( that one is so frustrating as well!) the symptoms that are not so common as well.....tingling, numbness, tinitus(permanent for a year now), pain, spasms out of absolute nowhere, fatigue. Severe problems with cognition, and sometimes,meaning sometimes daily, sometimes a few times a week, having issues walking, I will almost ' mis step', I bartend and my boss thought I had been drinking, i cannot avoid it, comes out of nowhere. The latest symptoms, blurry vision, and a few months ago, I went to text a fellow co worker, my left eye literally went blank. It seemed to last forever, because it was frightening, but realistically, probably only lasted 20-30 seconds maybe. I had gone back to school, had to stop because I cannot read my text books from the blurry vision, before I stopped, I stopped participating in any group discussions due to the last time I did, I was confident and almost memorized what I wanted to discuss, I started speaking, and all of a sudden, I drew a total blank. That happens several times daily( probably every hour). Word finding troubles me daily. Didn't mean for this to be so long, just wanted to get it all down, along with wanting to be sure it made sense! :) oh, I am in my 30's, have worked out since the age of 14, generally a happy go lucky person! However, this interferes with EVERY SINGLE ASPECT of my life. Difficult to always remain happy... Anyway, because of this, I can barely work, only one Neurologist accepts my embarrassingly enough state insurance I HAD to apply for due to regular insurance companies WILL NOT cover me, pre-existing. I love working, I love sketching, but now I cannot write longer than two sentences, hands contort??..... The mental is hard, to go from upper class all my life, to having Medicaid. $ doesn't matter like that to me, do not get me wrong. But I swear people seem to look down on you for even having that insurance! There wasn't a choice, going through looonnnngggg disability claim, was denied (in court) once, before that, seems like along with most people, was denied by paper so to speak. So, had to start over with new claim. Sometimes I feel it will kill me. Any and all feedback is appreciated. Oh wow, almost forgot the point! My Dr wants to change my diagnosis to MS but states the Neuro needs to be the one to do that. How do people work, how do people cope with ALL the symptoms, and normal MRI? I can barely function in my own home, again, any and all ideas, thoughts, advice would be wonderful! Promise future posts WILL NOT be this long! :) thank you!
"The mental is hard, to go from upper class all my life, to having Medicaid. $ doesn't matter like that to me, do not get me wrong. But I swear people seem to look down on you for even having that insurance! "
Welcome to the dirty side of American culture. The land of the free and the home of the brave, which turns its nose up at the less fortunate, viewing them as lazy.
I've been treated as if i'm mentally challenged simply by using a wheelchair, and I recall a man hugging his signifigant other protectively as I careened by with my seemingly drunken walk in an upscale grocery.
You do learn a lot about the other side of reality quite quickly. People are afraid of disability and death.Perhaps that can be forgiven since humans are hardwired to try to avoid danger. They're terrified they will become poor as well, and it shows in cowardice.I see little compassion.However, you will not be one of them, and neither will I. This is a crash course in compassion.
Im very sorry to hear you are suffering so much. I also recognize a lot. You are not alone! Keep on fighting to re-gain your health, there must be help for us, let's focus on that and meanwhile support each other!
Perhaps, and I take a dangerous step here, it's how you view yourself on Medicaid, not how others view you
I sat in a walk in family clinic yesterday, and I saw people on insurance, Medicare, Medicaid and no insurance being handled. Being an RN, I tend to observe and I saw everyone bring treated the same way. I have Medicare and was treated with common courtesy.
The people behind the counter get paid the same $$ regardless of what people with what insurance
When I was an ER nurse, we treated people not insurance
I hope this helps but as one if our seasoned and usually right on the topic forum members told you in your other post, perhaps would be wise to seek some help for your perspective to help you desk with this issue. We discuss anything and everything here that happens to our forum members and band together in helping each other.
I personally see depression and denial in your posts, denial being one of the 5 stages you will go thru, done repeatedly and some not do often. Please do not attempt to weather this alone, there are coping skills and meds out there for the points you mention in both your posts.
My intent was never to harm the original poster but to simply offer my own perspectives. I haven't seen that with everyone at all, but I have with a certain subsection of society that I have interacted with.I have faith that Susanna can handle it.
For the record,
I am in denial about nothing.
When was in the US, my Husband left 4 my friend (after 17 yrs.) -
me w/ our 2 children (then 16 & 12), but took our van (in a tiny town with no sidewalks, busses, taxies), computer, $, sellables, & no child support for ages (he still owes 9,000).
Anyhow, Medicare & food stamps saved my life, (I was already newly disabled from what's likely turning out to be MS).
Lemme tell you, people are often MEAN at the bank when u cash a disability ck., @ the dentist when u show ur card -
try taking out an easily de-magnitised foodstamps card at the grocery store & have the 'audacity' to buy a month's groceries @ once ($370/month for me & 2 teens, & a monthly ride to store), & inevitably someone behind you will mutter about how hard they work - must be nice to spend Their taxes on That much food.
One woman actually got into what was nearly a physical altercation with me in the carpark.
People are Very kind when they are willing to walk in your shoes, but for the 14 months on assistance (after working in education for years, & newly disabled & estranged), I found that niceness is about 50/50. Mind you, the Nice? THEY ARE NICE!! :-)
Back to Canada cos 1. My Family's here, & 2. The rotten ex refused to fix the roof / furnace / etc... before he left (worked as a roofer), & our house caught fire 2ce from space heaters, & the roof caved in over the kitchen during a November ice storm.
Meh, everyone's gotta mountain, right?
I Always think, it would be Worse to have (near dx'd) MS & 2 ALSO b in trench warfare / a Nazi prison camp - yeah? That would suck. Cheers me up everytime I feel despair.
I think the most amazing part of it all is the reaction to MS/dysautonomia/"my thing".I really do think that part of the reactions truly are based in fear, but i've also seen reactions that are based in compassion.I have also noticed that those with the most compassionate reactions are typically those who have been through considerable suffering themselves.Here's one of my best examples.
I will never forget the woman who grabbed my arm and waist and helped me walk in college whenever I had a severe attack of vertigo. She was so sweet and was always there to help me when no one was quite sure what was causing it.I later found out that she is an asylee from Afghanistan escaping a forced marriage.Her life's work is to improve the lives of women, and it truly shows.
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