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Woah, randomly came across a possible diagnosis...

Wednesday, August 15, 2012

I don't want to get any hopes up, but I just came across another condition for my doctors to consider. I have such a wide range of conditions that don't seem to fit together well, though the last genetics doctor I saw believes there's some 'umbrella' condition that links most of it together. There's a possibility what I just found could be part of the answer.

I'm not going to explain how I came across it or why it seems to fit (not unless a doctor gets on board and diagnoses it) because it's complicated and not a condition most will have heard of anyways. Plus it's another one of those 'scary' conditions that are incurable (though this is often treatable) and gets worse over time. Though it does answer several of the questions that are sticking out that the doctors can't figure out.

The problem is I have NO IDEA what doctor would be involved in researching this diagnosis. It's 11 pm and I don't want to spend all morning tomorrow calling a half dozen doctors' offices to ask questions, so I just left a voicemail for my neuro's nurse (in Milwaukee) to ask her advice about where to start with this. Of course, I could be totally wrong and I'm not getting my hopes up, but it's worth a consideration!

No one get your hopes up, but I wouldn't mind some good thoughts sent my way!

  Member Comments About This Blog Post:

KIMI_SILVA 8/22/2012 11:47AM

    I'm sending LOTS of good thoughts your way.

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DRAGONCHILDE 8/22/2012 10:40AM

    Where's doctor house when you need him? My husband's condition is like that. SO MUCH is wrong, there's no way to know what's causing it. I suspect potentially parkinson's or MS (both run in his family) but getting doctors to research anything on state insurance is tough, and now we incomed out of the medicaid program, so we're need to get him on disability for insurance.

We hope.

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JAMER123 8/15/2012 11:10PM

    Keep us posted on what happens. Hops all is going to work out for you!!

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MOM2ACAT 8/15/2012 4:04PM

    You are an inspiration, not giving up and showing us how we can be an advocate for ourselves to get things done about health conditions.

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LIVINHEALTHY9 8/15/2012 7:10AM

    Keep us posted on what you find out.

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EVWINGS 8/15/2012 1:12AM

    If this turns out to be the correct cause of your issues, I'll be dancing the happy dance for you!


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There's been a lot going on, so here's a long update.

Tuesday, August 14, 2012

I haven't blogged in awhile, even though I've been meaning to. I end up getting so focused on one thing or another that I forget other things I want to do.

So here's what's been going on:

My last blog I was so upset because I was told it was doubtful I'd get help from the county. The next day I got notice that I was approved for food support. Honestly, are they trying to make things more difficult for me by sending my stress level sky high whenever possible? The ironic thing is I can't eat enough food to spend the money they're giving me, and since I use coupons I'll probably have some money left over every month. Since I can't use that for the (expensive) supplements my doctors want me on, I'm not sure what I'll do with it. I'm also waiting to find out if I'm approved for medical assistance. In many cases you get put on state health care, but considering I'm averaging around $10,000 in medical bills each month so far this year (yes, around $85,000 by the end of July) they'll probably want me to stay on COBRA with them covering the $462.25 it costs. It will save the state a lot of money! But it will take awhile before I get the answer. I'm also waiting to find out about energy assistance, the (small) possibility of getting help with housework), and about cash assistance.

I saw my local neurologist last week and even though my neuro doctor in Milwaukee wants me put on a high dose of DHE to break this (probably decades long continuous) migraine, she doesn't agree. She's given me several prescriptions to try: imitrex (which I took when I was a kid and it didn't work), propranolol (which I have to be very careful because it can cause a drop in blood pressure, and mine is already on the low end!), and a nasal spray with a small amount of DHE. So far I've started the propranolol (which also can be used to treat PTSD right after a bad event or to ease the symptoms later on, so I'm glad to be trying this). She also wants me to be doing PT for my neck. I'm highly doubtful that will do anything but make it worse, considering all my other medical conditions.

I'm also supposed to be doing warm water PT (for my Ehlers Danlos, fibromyalgia, and orthostatic intolerance), but considering how far away I have to go to get to any place with warm water PT AND I have to find a doctor around here who is willing to set it up, I don't think that's happening! There's no way I'm doing PT twice a week at 2 different places - I refuse to waste that much time every week waiting for disability transportation or trying to drive myself to these places. Not when I have too many other things that need to be dealt with!

I've had several horrible frustrations lately, one of which being my neighbors. I live in a 4 corner townhouse and share a wall with some guys who have antisocial personality disorder and deal drugs to child molesters. Then across the common driveway is several more people who are sociopaths - but at least they're selling their house... or trying but failing as it's been on the market for months and no one wants it. Anyways, Saturday night there was a huge deal with the next door neighbors throwing a huge party. They had at least 3 visits from the cops (in groups of 4), got 2 tickets, will get at least 1 more from the association, and yet they argued with the police and decided to stalk outside my house to threaten me! This started around 10:30 pm and went until after 2:30 am. One of the officers even asked me to call his cell phone directly (bypassing dispatch) if it continued beyond the hour he sat at the road. I appreciate his dedication to what he called his 'project for tonight', as 2 guys there were drunk and one was clearly agitated. I wish they would've tried something so they'd be arrested!

Friday night I went and visited my cousin (well, cousin's ex-husband, but it was an amicable split, so he's still like a cousin) and his girlfriend, who recently moved to the suburb next to mine. I had a great time with them, even if it wore me out really badly. We're hoping to get together again, maybe even do some karaoke. My favorite part wasn't playing rock band, it was the wonderful conversation with her about books and her ability to at least somewhat understand my medical conditions when I talk about them (most people's eyes glaze over and they can't focus long enough to listen let alone understand).

Today, after a lot of argument and attempts to stiff me, I was notified I'm getting a short term disability payment for Jan-April. Overdue, yes. Lasting, no. Helpful, yes. But it will barely cover 1 month of bills. Add to it the 401(k)s I'm pulling and I'll have enough to pay bills for maybe 3 months. Soon I'll have to decide to stop paying my mortgage and let my house fall into foreclosure. Then I'll have a place to stay rent-free for about a year before I'll have nowhere to go. My social worker is supposed to be trying to help me figure out where I can live, but she already said she'll be handing me off to someone else (for long term), so maybe they'll have ideas because she doesn't.

I still need to figure out how to appeal the long term disability denial. It won't be enough to save my house, but it will be helpful. I've also turned in the documents I've gotten (so far) from social security disability, so now I'm waiting on more requests or a determination from them. It could be months or more before I know.

On Friday I finally couldn't put off taking my car in any longer. My brakes were clearly metal on metal. I got new front brakes, had the caliper and brake assemblies on all 4 tires cleaned (this is the 5th time I've replaced the brakes in the 7 years I've owned the car - this assembly with this car is notorious for brake problems), and had the tires rotated. I wish I could count on disability transportation more (and it wasn't so difficult on me physically) so I could leave my car (which is 13 years old) alone so it'd stop breaking down so much. I also got an oil change. Together it cost almost $270.

At least my stomach is working better! I've been able to maintain my weight (and even add a few more pounds) since I was taken off the TPN a month ago. I'm trying to get back into some exercising, but it's very hard for me. Not only am I used to spending most of my days laying on the couch, but even gentle exercise exhausts me and any wrong movement is incredibly painful. Plus since I have to do everything for myself - including dealing with the doctors, insurance, transportation companies, and researching my conditions because half the doctors don't understand them - my brain power is usurped by all of this and can't be spent on what I should be doing for my health.

I've also been spending time on PCH (publishers clearing house), entering sweepstakes and trying to earn points to enter more sweepstakes. I also enter several other sweepstakes every day. If I can't make money the 'old-fashioned' way, maybe I might get lucky with a sweepstakes if I'm committed to it. (Probably not, but you can't win if you don't try, right?)

I'm also trying to do some reading and considering ideas for my own writing. Obviously I have too much going on to really focus on this. I promise I have ideas though! I just can't stand the thought of trying to put a half-effort into it. On Thursday my library system is having a speaker about writing and publishing, so I'm hoping to make it to that.

Unfortunately, I'm still not sleeping well. I still have headaches every day. I still have pain every day. There are still a LOT of questions about what's going on with my health. And I'm still not getting the help and support I need from my family. But it is what it is, so all I can do is keep trying to move forward and see where my journey takes me. I'm at the mercy of the universe for the most part, so what little I have control over I need to deal with.

  Member Comments About This Blog Post:

DRAGONCHILDE 8/22/2012 10:44AM

    I can second LADYDARYA's suggestion for MyPoints... I use them, and while it's not going to pay your bills, the odd $50 gift card is VERY nice. I've gotten about three since I started using them, takes a while, but I don't do the surveys or searches, so you can likely do it more often.)

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JAMER123 8/14/2012 11:51PM

    You must be feeling better. You sound like it in your blog. I know there are many hurdles to cross yet and I certainly hope they come through for you. I will keep praying for you and the resolution of your problems. Blessings! emoticon

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EVWINGS 8/14/2012 11:42PM

    This is one of the most positive blogs you've written in a while. It gives me hope that you are at least feeling better with your self esteem! I'm so proud of you i could burst!!

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LIVINHEALTHY9 8/14/2012 7:07PM

    You keep fighting the tough fight.
You are taking charge of your destiny and doing what you can to take control of your life.

Stay strong!


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MOM2ACAT 8/14/2012 4:07PM


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LADYDARYA 8/14/2012 6:01AM

    Have you ever heard of My Points? It's a way to earn points towards gift cards by reading emails, taking surveys and on-line purchases. When I got my treadmill I got it through walmart.com and got 50.00 in gift cards - which you can use to get cards to Target or Amazon (among many). I am back up to having enough points for more gift cards and most of that is by emails and surveys.

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SHIRAROCK 8/14/2012 5:57AM

    I don't know how you stay positive with all that is going on. I am praying for you. That's all I can say. It was just wonderful to hear that the police officer showed he cared about you.

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August 2nd, 2012

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?

  Member Comments About This Blog Post:

DRAGONCHILDE 8/22/2012 10:51AM

    I just want you to know something. I have no advice, because I know how frustrated you are, and how difficult the system can be, and how it treats the poor.

But I do want you to know that you are NOT ALONE. You're not the only one fighting this battle. I've been my husband's advocate through his entire battle - we opted for the lawyer because frankly, the stress of doing it all himself very well might kill him (if not directly, he's already threatened suicide and been hospitalized because of it) so we figured the financial ding was worth it. Plus I work, so he's not relying on that money for living. We mostly need disability for the medical coverage.

It's tough. It's sh!tty. But there are others going through this, and you are marching a well-worn bath.

Maybe it's not much consolation, but I have found that just knowing someone is out there dealing with the same crap can sometimes help a little.

I'll pray for you. Because it's enough to make a girl lose her mind.

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NURSE_ARI 8/6/2012 6:35PM

    My dad has COPD and emphysema and got denied 3x until he finally got a lawyer. I work in the medical field and fought until he FINALLY got Medicare. I still say try to fill out the Medicare disability forms and if need be then get a lawyer because each time of denial was extremely hard.

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NFSISTER 8/2/2012 11:25PM

    A doctor may not be able to fill the forms out, but do you have a doctor backing you? Also if you ever saw a therapist they may be able to help as well. Many people I know were unable to get assistance due to medical reasons, but had no problem with mental health reasons. You have touched on mental health issues before so that may be another angle to try. Alcoholics and drug addicts can get help so there is no reason you shouldn't be able to. My SIL had a really hard time getting assistance until she had her doctor back her. Don't leave any stone unturned.

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JAMER123 8/2/2012 10:50PM

    You have a complicated situation and I can see why you get PSTD. Have you tried going to the Legal Aid Society for help? They are income based and when there is poverty, there is little to no fees. Many times they are the ones that can get the ball rolling. A friend got denied SSD after a stroke at an early age. She was initailly denied and went to Legal Aid. They sent a letter in and she got on SSD as well as back pay. She had to wait a year before reapplying but it came through. I'm not going to tell you it will getting easier or better but there are people that truly care about others and are willing to take on a difficult case. You need to find the person!!

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1STATEOFDENIAL 8/2/2012 7:54PM

    County aid is the people who are denying me. I have to fill out paperwork for social security yet and it says right on the forms that doctors are not allowed to fill them out - I must. But the social worker told me that because several of my conditions are genetic I might get turned down for social security disability as well.

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JOYCECAIN 8/2/2012 7:52PM

    Question, are you going thru the welfare system or Social Security? Me- I went to Social Security and they sent me to a doctor. I got my disability because of my knees. That is nothing compared to you. Then I went for food stamps and medical card. With all your problems, who is denying you. When you say social worker, is it SS. or Welfare? Couldn't your doctor fill out the form for SSD? The doctor my sister goes to told her when she gets tired, he will fill out the forms. I am stumped at your situation.

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Updates: OpEd, Milwaukee, and more paperwork

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!

  Member Comments About This Blog Post:

JAMER123 8/1/2012 11:01PM

    So glad you are having a good week. I know what you mean about blood tests. I had multiple blood clots in my lungs and lived through it. We did all kinds of testing as my dad had a similar problem and almost died, and a couple of his cousins as well. So there is a family history. My blood has gone to all the best testing places and they have run every test thought of with negative results. So the Drs. are saying there is a clotting factor yet to be discovered that our family has. They are keeping blood just in case they figure it out!

So glad you are looking at rewriting the OP. It might be more powerful on the bullying if you talk about that & then add examples following. It certainly need to be addressed and I hope you continue on your pursuit! I am disabled with a tag as well but not on SS disability. I haven't paid that much attention to others so will keep my eyes open! Good luck on your trek!

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LUCIOUSKITTY 8/1/2012 10:57PM

    Sounds like your going through a lot and pushing through a lot of humps finally. That's great. Hope you can finally find out whats going on.

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LIVINHEALTHY9 8/1/2012 9:12PM

    You have had a lot on your plate but it sounds like things are moving in a positive way for you.
I am glad to hear that.

Stay strong!

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NFSISTER 8/1/2012 6:11PM

    I'm glad things are starting to look up for you. It will be interesting to finally figure out what the "big" culprit is. That's how is was with my brother. He kept getting diagnosed with smaller things until they realized it was all connected to his neurofibromatosis.

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EVWINGS 8/1/2012 5:41PM

    I'm so proud of you for having such a positive attitude about everything! For every named disease, so many subjects have to studied, etc. before something is confirmed and it is named. This seems to be what is happening with you? Are you a fan of "The Golden Girls"? Dorothy had the same with her CFS. None of the doctors knew what it was until a friend suggested she see one more doctor. He confirmed it with blood work. Your situation sounds similar. Last fall into winter I was literally being poisoned to death and most of my doctors didn''t know what was wrong. Finally one of the specialists that was called in requested a test that hadn't been done because of the cost. That showed I had somehow contract salmonella poisoning that had turned into an infection. Once that was determined, I was given proper medicine and care and by January I was able to do physical and occupational therapy until I could finally walk again. So seeing your attitude really is extraordinary considering all you have been and are continuing to go thru. If you need more support, let your Spark buds know. We are here for you always.


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MOM2ACAT 8/1/2012 4:44PM

    It sounds like you are making good progress on things!

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My OpEd piece about adult bullies

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.

  Member Comments About This Blog Post:

MOM2ACAT 7/26/2012 4:13PM

    I think it's great. I would also add, as the others have suggested, your own personal experience.

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GUTHRIESM 7/25/2012 8:28PM

    Glad you are standing up!

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-AIRYN- 7/24/2012 1:42PM

    I agree with re-reading it tomorrow and then seeing how you feel about it. I also agree with maybe putting some of your personal experience in it so people can see the humanistic reason why you feel that way.

I had a temporary handicap tag when I had a broken leg. I wasn't able to shop by myself so my dad would take me and I would give him the tag to hang up. He'd give me this look and say, "I'm not using this." When I'd ask him why he'd say it was b/c he was fully capable of walking once he parked the car in the lot b/c his legs weren't broken and he could drop me off at the door and pick me up when we were done. He wasn't taking the spot away from someone who truly needed it.

After reading your OpEd, I wish more people were like my dad.

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IVORY1825 7/24/2012 6:36AM

    I think that you need to mention upfront what happened to you a bit more specifically, because without the context, I don't think people will really understand. I agree with Jamer as well, wait another day or two, and revise it. There are a lot of good ideas in there, but I think they will come through better with a little less raw emotion. I definitely think you should send it, though, because it's true, adult bullying and ignorance of said issues is definitely a problem in society today.

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SHIRAROCK 7/24/2012 6:27AM

    I love it... I think you need to include another suggestion... maybe something like (I am not sure if this is true in your state)... something like an additional way of the state/city/district collecting revenue from people breaking the law...

...like speed or red light cameras, the state/city/district could install handicap parking cams and record if someone is illegally parked... that could actually net the $200 or $500 multiple times in one day if someone who isn't handicapped parks in a handicapped spot.

I think you need to add some more-- DO SOMETHING'ness to the OpEd. Work the edit from the blog into the OpEd. You express the outrage awesomely. Anyone who reads it is with you... the person who is 'with you' now, needs some action they can take, next... to help.

Let us know what happens with the OpEd.

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JAMER123 7/24/2012 12:53AM

    I totally understand your frustration and the bullying that goes on. I support your need to write OP/ED. as there are too many that disregard others. The cell phones, texting, pushing & shoving to the head of the line, cutting you off in traffic especially a truck with a camper, and it goes on and on. What I ALWAYS tell people that are upset and disgusted to write what they feel and the wait a day, re-read the op/ed. Then wait another day and if it still sounds right to you, send it. I think that someone other than police all the time needs to be trained and given authority to assess fines. If one isn't fined, one will continue the negative behavior. The signs say a fine will be levied so give them a fine otherwise take the sign down. Good luck on getting the results we need for the disabled.

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