Thursday, August 02, 2012
This blog is incredibly emotional and negative. I'm talking about the bad realities I'm facing. This touches on very tough topics, including some things many of you don't know about me. It's also very long. Feel free to NOT read this (I won't be hurt) or stop at any time. I don't want my problems and sorrows to hurt anyone else. I need to put this out there because keeping it in is only making it worse. What's in my head is even worse than what's here, but this is bad enough as is. I also don't need coddling or to be told that everything will be fine, because none of this is going to be fine. It's not possible. Things keep getting worse, not better. As my health continues to fail and the doctors are unable to figure out what to do, there's little I can do to change anything.
Again, if you have any concerns about what you might read, please stop here. You could become upset or sad, so if that will derail your journey to better health, don't risk it just because you're wondering what the big deal is. If no one reads or responds to this blog I'm okay with that.
Here's what I posted on a team yesterday:
It just figures. After I posted the blog I went to work on paperwork. Started with signing some documents to send to my social worker. Then as I was finding old resumes to get all the jobs I've ever had for the SSD paperwork, I tried to call the other person at the county who is supposed to be setting up the medical assistance for me. She got notification that the state medical review team has certified me as disabled, but she's denying me medical assistance. I had called several times over a month ago to ask her questions about what I was supposed to provide for the proof documents they wanted and she has never once called me back. When I got my social worker she said her team would take over my case, then she helped me figure out what documents to put together. Well this other woman is absolutely refusing to hand over my case to my social worker's team, and is still ignoring all of my phone calls. I finally spoke to her boss and told her how upset I am by all of this, especially her utter failure at communication. Oh, and apparently I don't know my own birthdate, as she actually argued with me about what day I was born! She couldn't read my license (NOT MY FAULT!) so she put the wrong date into the system (because putting it on numerous forms means nothing). Finally I couldn't stand her excuses anymore so I told her fine, I will give up working with them and start over from scratch with my social worker's team. She was condescending and actually almost laughing as she said 'fine'. I hung up and literally screamed a few cuss words at the top of my lungs (it echoed).
I've been dealing with this crap from that office for 3 months! Now I have to completely start over from scratch. And in the meantime, I now have more bills I have to pay because medical assistance won't cover them after this much time. Plus I had to pay for another month of COBRA ($462.25) because of this ridiculousness! There's a good reason why so many people commit suicide or take up drinking and drugs when they can't take care of themselves anymore. It is nearly impossible to get the aid you need in this economy. I should have known better than to get my hopes up. I should have realized right at the beginning when she refused to respond to me and my questions that this was useless. What a waste of time and energy! Doesn't matter if I'm disabled or not, I'm still not going to be good enough to get help from people who don't think I deserve it.
Since last night I've been close to a state of panic. For the last few hours I've felt like I'm seconds away from having a raging panic attack. I even have taken my blood pressure and pulse a few times, both are significantly high (for me) - my BP is about 20-50 points up for systolic and 10-30 points up for diastolic. My pulse is up about 20-30 bpm - and all I've been doing is sitting/laying on the couch watching tv and doing things on my computer. But no matter how hard I'm trying to ignore what happened last night (above) and what happened this morning (get to that in a moment) the physical reaction to this severe emotional distress is unmistakable. I've spent almost my entire life in this state - numerous events causing PTSD with little to no positive support will do that to a person - and it can actually cause permanent physical damage. No matter how I'm attempting to distract myself, my body is so full of stress hormones (like adrenaline) that just standing up to walk I nearly blackout because my breathing stops, my blood pressure plummets, and my heart rate skyrockets to nearly double in seconds. I know right now everyone has an idea in their head to share with me about how to relax and destress. It won't work. With my physical issues and the severe emotional and physical traumas in my past added to an episode of acute emotional distress means there is little that can be done to calm my body. The few options I have now I will try in a little while, as it means taking medication to make myself unconscious/sleep to shut off my brain and ease the hormones that are being released. I need to ease the physiological response so I can attempt to overcome the mental response.
What has me so worked up? You read above what happened yesterday to make me absolutely livid. It is always disturbing to me when someone treats me like I'm worthless, even though it happens all the time. Then this morning my social worker (I left a vm for her last night) emailed me. She had incorrect information about what I'm fighting for from disability and what I'm eligible for and she's saying something completely different than what I was told on the phone last night. I was told they flat out refuse to hand over any paperwork and that my social worker's team is not allowed to handle my case. My social worker is saying they will be sending over the paperwork to someone she's gotten appointed for me, but that yes they will start all over again but all I have to do is give them time to do so as they shouldn't need anything else from me. If they can't get my paperwork, how will they not need anything? She also "argued" with me about having a company help me with applying for social security as I should be getting the higher paid kind... she's not realizing I've already been denied the lower paying kind and the $200 that I "might" be getting if approved is the higher paying kind; though she's under the impression that because some of my conditions are genetic that there is no way I'll get anything. I explained to her that I already won't be able to live off of $200/month as it is, so if 25% of the first check (which could be 6 months to 2 years of pay) goes to this company for helping me, it will be even more disastrous. She said she'd come by next week to help with the forms, but I need to have them done and turned in about that time. So I'll just fill them out myself and she can look at them right before I send them in. She also told me that I'm clearly going to need help from a social worker for more than a short time, so soon I'll be handed off to someone else. Even so, there's a good chance I will be turned down for medical assistance because I own a house and a car. But giving them up means I will be homeless with no transportation. There isn't even any open waiting lists for section 8 housing in the entire county, so they have no where to place me. The bank said there is absolutely nothing they can do to help, so my best bet is to allow the house to go into foreclosure, which will give me a year of living payment free before I'm forced out. I have no family I can stay with (I'd rather be homeless than to deal with the mental, emotional and occasional physical abuse) and no friends who could/would help.
Basically, because I have screwed up genetics, heath problems that the doctors can't figure out, I fought to work as long as I possibly could because no one believed there was anything wrong until recently, and because I've always tried to do the right thing: save money instead of spend outside of my limits, pay my bills on time in full, and not have kids I couldn't afford (which now it seems pregnancy could do permanent damage or even kill me and genetically the child would be in worse shape than I am and potentially not survive) I'M GETTING SCREWED. It makes me question the point of continuing to fight the inevitability of me continuing to get nowhere with my health or with getting aid.
My entire life any time my mother feels jealous or threatened by me being happy or when she feels less than adequate because I proved her wrong she's always said "I brought you into this world and I can take you out whenever I want." Screwed up, right? Well right now I want to ask her why in the hell she never followed through with the threats. She thinks murdering her child is a funny joke to crack, and the abuse I suffered at her hands was enough to kill off a large part of who I could have been (I've never had any self-esteem and rarely follow through with things because all I've ever heard is how bad I am, how stupid I am, how worthless I am, etc) so why was I forced to survive all of that and now have to go through utter hell because even when everyone admits I'm clearly disabled they feel no need to help me? WHAT IS SO AWFUL ABOUT ME THAT I DON'T DESERVE HELP?
By now you're wondering how did things seem so positive yesterday and so negative today. Clearly I must be exaggerating about something, right? Yesterday I was able to put on forth an exaggerated positive spin on what's been happening, while today I can't even begin to think of what positives could come out of this mess. These issues have been nagging me for months and growing in intensity until finally it has come down to this. Give up my house and be homeless if I want to have medical assistance from the state. (BTW, my current insurance has paid out nearly $71,000 for my care since January, while I'll be paying out about $3,500 if I can figure out how to get the money to actually pay it.) To get medical assistance will undoubtedly create more problems with trying to deal with doctors and my bills alone could probably bankrupt the state! In the meantime I have to pay $462.25 per month for my COBRA or I will have no insurance at all. No insurance means no doctors, no tests, no possible treatments, but that COBRA is just over half a mortgage payment. Also by staying in my house I'll probably be denied food assistance and all other county aid (too many assets), which means by the end of the year I'll be completely without a penny to my name. I still have to figure out how to argue for long term disability, but I can't even focus enough to finish the social security disability paperwork, so how in the heck am I supposed to be able to think like a lawyer? Paying for someone to help will take away a lot of the money I'll get for the first few months or years. So do I try to stay in my house and pay my bills and hope that I have a miracle and win Publisher's Clearing House? Do I stop paying my mortgage and hand my house over to the bank and live in my car while I try to fight for this stuff? Do I give up my house and sell my car and find a homeless shelter that's overcrowded and risk my life (not just from the bad neighborhoods where some are located but also from my health conditions making it unsafe) so that in a few months or a year maybe I can get a few hundred dollars a month from the county or the state, just to realize they have no address to send the checks to? Do I just give up all of this and stop fighting, then see where my health goes when I have no food, no insurance so no doctor visits (not like they've been figuring much out, so there's little chance of treatments at this point), no shelter, no money, and nothing left to live for?
My family treats me like crap. The 'system' treats me like I'm all that's wrong with the world. I'm becoming useless. Many of my conditions are incurable and barely treatable, and they still can't even figure out most of what's wrong with me. So what is the freaking point? I understand some people are born tortured and others are born to be tortured. Some find hope, love, and faith in a higher power leading them to good things in their lives, but with the things I've been through if there is a higher power looking after me then I'm their favorite chew toy. Just like the people here on earth, the more I ask, beg, plead for help from a higher power to make my life easier the more I'm bombarded by things no human is supposed to be able to survive. The question isn't "why me" it's "why not me" since I've been forced to survive things many can't even imagine, why not pile more on me and see what happens? Why not hate, hit, hurt, and humiliate me? Why not leave me to rot? No reason to do it to a useful human being when you've got the piece of crap sitting there who will take anything you can think to throw at her and then some!
So there's the reality of my situation. There are no good options. I fight and fight, try and try, ask and ask, yet I keep getting turned away and denied. The definition of insanity is continuing to do the same thing over and over and expecting different results. Maybe it's time to just say screw it. If someone is going to help it's not going to be because of anything I've done. So why keep wasting the small amount of energy I have?
Wednesday, August 01, 2012
Thank you to my sparkfriends who commented about the OpEd piece I wanted to write. I haven't submitted it yet because of the comments that I should wait a few days then look at it again, but I spent the end of the week and weekend in Milwaukee so I haven't gotten back to it. I am considering your feedback, but I want to add that I wanted the piece to be about more than just people who park illegally in handicapped parking, though that's what set me off that day. It's also about the other adult bullies I face such as my neighbor who threatened my life when I told her to get her dog off my yard (long standing problem with that family who uses everyone else's yard then never cleans it up) and my neighbor who is a sociopathic drug dealer (though is there another kind? haha) who gets pleasure from continually disrupting my life. I basically tried to hit on several of my gripes without paying extra attention to any one incident, since they're all horrible. I was attempting for commentary over the way that adult bullies can get away with the most egregious wrongs because the good people either are too scared to stand up, are ignored by those who are supposed to uphold the law, or are threatened with retaliation when they do try to make a difference. So, that being said, does anyone have any additional feedback before I rewrite it? (BTW, caught another illegally parked car this morning. I wrote down the plate and car info, took a picture, and submitted it to the website when I got home. Won't do anything in the moment but maybe it will do something in the long run.)
As for Milwaukee, there wasn't any major new developments. Genetics reaffirmed the Ehlers Danlos diagnosis and said I'm not presenting a mitochondrial disorder right now, but the tests won't show a problem until it's too late to do much about it. They took some blood and will test for it anyways. They agreed that it is possible that the Ehlers Danlos has caused the connective tissue holding my organs in place to stretch and pull them out of place, which could cause a multitude of problems. There's no way to know for sure though, and if it is a problem doing surgery will only make it worse, so there's no treatment option unless it is literally killing me because they're so far out of place.
GI is interested in my case so he's requesting all my records to see what's been going on. After reviewing them he'll consider a few more tests that haven't been done before or if he has other ideas for treatments. I'm actually doing really well lately, eating about 2,000-2,500 cals per day to maintain my weight at 10 lbs above the minimum they want me at. Doesn't mean I'm cured, just means it's a little easier right now. Remember, if I lose weight again I'm getting a J-tube placed to deliver nutrition right into my small intestine, though we don't want to have to do that because of the Ehlers Danlos.
Endocrinologist is a little confused. When I had a 3 hour blood glucose tolerance test I showed full blown type II diabetes, but everything else proves reactive hypoglycemia. She also touched on GI issues by taking blood to test for celiac. I'm doubtful I have a gluten allergy, but a blood test is an easy way to prove yes or no.
So I've got a lot of blood being tested. It could be weeks before some of the tests come back. The best part of it is every doctor I saw all said there is clearly a lot of things going wrong in my body, they're just having a hard time pinpointing what it all is and what can be done about it. Medicine is an inexact science and for a case as dramatically complicated as mine, as long as they keep looking and keep trying there's hope they'll figure something out. I respect doctors who admit they don't have an answer but are willing to keep looking. I can't stand doctors who don't have an answer so they blame the patient and call them a hypochondriac. Having every doctor in Milwaukee throwing their thoughts into the ring and knowing something is there, even if they can't name it, is such a good feeling. As the geneticist said, I have an overwhelming body of symptoms spread over multiple conditions that are all so different, but there's probably some currently undiagnosed condition that wraps it all up and explains it. All they can do is keep looking and testing and hope that something points them in the right direction.
Other than the doctor appointments, I had a good time with my relatives. I was able to enjoy some great foods my aunt made, and helped her prepare foods for BLTs one night. Pretty awesome I made it through that without feeling awful. Not to say it was easy, but I didn't black out or fall over. We went to the zoo (I was in a wheelchair for that), toured the Sprecher Brewery (I enjoyed tasting their sodas), and I played a bunch of wii games. I overdid it a bit with everything I did while there and the recovery is still happening, but a few months ago it would have been much worse.
Just before I left for Milwaukee I received paperwork from Social Security that needs to be filled out and sent back in 10 days. I called yesterday and asked for a few days extension because of the Milwaukee trip, and this morning I got a call that a few extra days is fine. I could pay someone to help me fill it out, but I'll be making almost nothing as is, so I'm hoping that taking it slowly will allow me to get it done myself. I have 16 pages, so I'm going to try to do 1 page at a time, maybe once an hour or every other hour (in amongst the other things I'm doing) and by the end of the weekend I should have it done.
Though a bit of really good news: the state medical review team (SMRT) reviewed my paperwork and extremely quickly responded by certifying me as disabled for 2 years from Feb 2012 until Feb 2014. At that time I'll have to recertify, but if Social Security certifies me as disabled I'll be automatically certified by the state. This means I should be getting medical assistance from the county, hopefully food support, and I don't know what else. Of course, I'm waiting for my caseworker to contact me about the medical assistance (if it's not in effect by today I have to pay another month of COBRA at $462.25). It'd be nice if she would call me back at least once after all the voicemails I've left for her!
I'm sure there's plenty more I could tell all of you, but this is crazy long so I'll end it here. I hope all my sparkfriends are having a good week. As always, thank you so much for your support and wonderful comments. You're all wonderful!
Monday, July 23, 2012
I'd like to get some feedback from others before I submit this OpEd (opinion/editorial) piece I want to send to the local newspaper. I'm normally not someone who is willing to write an OpEd, but I'm so absolutely angry right now that I want this out there for people to consider. As I'm sure you'll be able to figure out, I just confronted someone who was illegally parked (in two handicapped stalls and an access aisle) who threatened me in return. I had already called the police who clearly had no interest in dealing with it. Please share your feedback with me so I know if I've stated myself clearly or could use some fine tuning. I may have gone a little overboard with 'big words', but when I'm angry they tend to come out. I had to rewrite it a few times due to errors on the submission page and losing everything I had typed, but I've read it to myself twice after finishing it so I think I have it about right. Still, your feedback is appreciated. (Note: it has a limit of 4125 characters and 750 words and I'm at 4113 and 750 words so if I add I also have to remove.)
EDIT: I've found a website to be used to report people who are illegally parked in handicapped parking. The information is sent monthly to each state for review and (hopefully) penalties. If you see someone illegally parked in a handicapped stall, PLEASE report it to the police or to this website.
At what point in history did our society determine that it is okay for some people to willingly and maliciously hurt others, especially the disabled? We've all seen people illegally parked in handicapped parking stalls. Who has stepped forward and done anything about it? Upon calling the police about one such person I was met with a scoff and a condescending remark from a dispatcher about how they're too busy and will be there eventually. By the time 30-60 minutes passes and they arrive the car is long gone. When the risk of a $200 or even $500 fine is not enough to dissuade someone from denying rights to others, is it okay for police to also ignore it? Once someone is allowed to be a bully they will continue to do so until the consequences are enforced. There's a movement happening to combat bullying in our schools, but what about the bullies who have grown up and now feel free reign to harass other adults? Yet, as people say "kids will be kids", now the sentiment has carried over to adults who are allowed to inflict damage and pain without fear of retribution. Those who are immoral and lack empathy are allowed to deny rights to those who are caring, helpful to others, and have a conscience. How many times have you honestly experienced what is claimed as "Minnesota Nice"? Our roads are filled with people who will just as soon cause an accident as allow you to drive unimpeded near them. Parking lots are full of people so busy with distractions that accidents they cause are claimed as "not my fault" and followed by false insurance claims. In grocery stores motorized carts are damaged or blocked so they can't be used. People park on ramps and in access lanes to deny others easy entry. "No Parking" signs are ignored and "fire lanes" are blocked because "This one time it's not going to matter."
Will our society eventually become warring factions battling to see who has rights and who doesn't? That's a trick question, as it is already happening to your neighbors. People who are unwilling or unable to defend themselves are harassed and hurt every day. Neighbors threaten neighbor's lives and destroy property while police claim it isn't real. Adult bullies are causing such harm that few feel safe enough to stand up for anyone else. In the eyes of the law these people have committed a crime, yet if it "isn't that bad" then it supposedly doesn't matter. Well, it does matter. Is the definition of "Minnesota Nice" so minuscule that it's only worthwhile if you are praised and rewarded? Maybe I've just been privy to meet some of the worst, but 9 out of 10 people I meet are either downright cruel or so focused on enjoying their spoils that whatever detrimental damage they do is of no concern.
As a person who is disabled by rare conditions many people can't understand, I am appalled by the treatment I've received by my fellow Minnesotans. It saddens me every time I see yet another person denying someone their rights. I'm disgusted when others refuse to come to the aid of those who need it most. I'm sickened by the utter disregard of the law. It's disturbing to know that our society so greatly lacks respect it has become okay to blatantly cause harm without remorse.
Why should you care about these issues, you ask? Because someday it will be you or someone you care about who is wronged with no justice sought. Will you jump in and exact revenge on your own? Of course then you'll be the one charged with crimes. If we can't solve the problem through retaliation and vengeance, what else can we do? The next time you see a bully don't blow it off - get involved! Call the police, step in and protect the person, or in the least be willing say something in condemnation. Silence is what allowed those childhood bullies to become that adult illegally parked, making fun of the disadvantaged, or causing a multiple car pileup. Choosing not to be involved can lead to others giving up on life. Allowing some police to believe that small crimes are not important is feeding complacency.
I look forward to someone stepping in to protect me next time I'm threatened.
Friday, July 20, 2012
Here's a song to brighten your day, strenthen your resolve, and hopefully help you take a few extra steps towards your goals!
I was listening to this song and it made me think of a lot of my sparkfriends!
Wednesday, July 18, 2012
I finally got over to the movie theatre to watch Magic Mike, the male stripper movie starring Channing Tatum. So here's a short blog with my thoughts on the movie. I'm attempting to avoid giving spoilers, so most of what I say you'll learn quickly in the beginning, from the trailer, or from any description of the film.
First, women should not bring their guys to this movie. It is awkward enough sitting in the same theatre as a bunch of other women watching almost naked men on a big screen - it's worse having guys there! Take your girlfriends and giggle when you get home. The guys will get the same effect. If they want to know what really happens in the movie, they can rent it when it comes out on DVD in a few months. Nothing like watching ripped guys dancing provocatively on the movie then seeing some very unattractive man walk by with a tub of popcorn that could fit on his head to confuse your female hormones! (I think I was 1 of 5 people in the theatre and the 2 guys matched this description.)
Turns out Channing wrote it as a loose adaptation of his own experiences as a male stripper before he became a model and actor. He plays a character different than the character based on himself though, which makes sense when you watch the movie, considering it'd be harder to believe him as the 19 year old who has no idea what he's doing. It also explains how he rules the stage with his dancing - no normal guy could learn that for a movie!
I felt the backstory was not well-developed. I knew when the plot hit the epic decision moment at the end, but I was left hanging. Sure he made his choice, but the ending left so many questions! Not enough for a sequel but enough that I felt unfulfilled (pun intended). The dancing scenes were great, even if I've always thought the vast majority of male strippers are just awful. (Side note: I went to a male strip club with a bachelorette party once when I was in my early 20s. Some 40-something guy well beyond his prime was walking in the crowd, grabbed my glasses, rubbed them on his crotch, and I was much more disturbed than delighted. I'll never get over that creepy feeling.) The only dancer that really stood out as having a good idea how to really work it was Channing. The rest really tried, but I spent more time laughing at the attempt than feeling turned on. Matthew McConaughey was hilarious as the over-the-top, well-past-his-prime-but-still-trying owner who makes the money off his employees yet thinks they can't do anything without him.
What could have been done better? Take out a scene or two of dancing and spend more time on Mike's backstory. Show him working on the furniture he loves to make. Show him spending more time trying to get his other business started. Show him confronting the owner once or twice. They also spent plenty of time on The Kid's life, but we're only left wondering after what his sister said at the end (and with him doing the final dance sequence). The sister also suddenly changes her mind? One scene she acts one way then right away she's done a 180? That seemed like 'I'm sick of writing so I'll make the ending easy' or 'no one will watch the movie past the final dance scene so let's cut it short.'
Overall the best parts are when Channing is dancing or even right in the first 5 or 10 minutes when he's doing one of his other jobs. The rest of it you can fast forward without losing much, because the plot just hangs there in the background like an empty g-string thong. Sure it's there to look at, but it's pretty worthless if it's not holding something up.
If I ever take part in another bachelorette party I'd probably rent this movie for us to giggle about (it's better than having actual strippers past their prime dancing around you), but it's not one I'll buy to watch often. Find some pictures of the stripping scenes online and make one your computer desktop. It's just as effective as the movie.
Have you seen the movie? If so, what are your thoughts? If you haven't seen it do you plan to?
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