I’m a High-Strung Mess

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I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…

I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.

The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.

Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!

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Spiral of Anxiety and Fear

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I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.

Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.

As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.

I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.

Feeling Low After Lawyer Visit

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Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.

The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.

The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.

I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.

Denied Access to Mental Health Records

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I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.

To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.

Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.

Social Security Disability Rant

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Ok, so I had another subject planned for today’s post, but I need to rant a bit, so I’ll save that topic for later. I hope you won’t mind listening to my frustration today.

So, I’m part of a group on Facebook for people with certain mental issues, and I have noticed many of the people in the group getting social security disability solely for those mental issues, which I happen to share. I am not upset that they got disability for their problems, but I can’t help but compare it to my own situation and feel angry at how I have been treated by the system.

I’ve been fighting for several years to try and get disability benefits, my worst conditions that affect my ability to work are: Bipolar Depression, Asperger’s, PTSD, social anxiety disorder, fibromyalgia, chronic fatigue syndrome, IBS, degenerative disc disease and bulging discs, chronic bronchitis/ear infections, and severe plantar fasciitis. ALL THAT and yet I am still fighting! It pisses me off because I know people who got it much quicker for SO MUCH LESS or just ONE of my conditions. And none of these conditions are light, even the last rejection letter from social security said the conditions are indeed severe…and yet I got turned down AGAIN? I have a plethora of medical evidence and have tried to follow medical advice to the letter. What more can I do???

I DO have an attorney (my 2nd actually), and I am now waiting for a court date, the 2nd time I will have to go to a hearing for this. The last judge I got had a record for barely approving anyone, which seems unfair in itself. How can it be a fair system when some judges approve a majority of people and other judges approve hardly anyone? Were it not for my husband, I would likely be homeless by now.

To make matters worse, one person in the Facebook group insinuated that plantar fasciitis and chronic ear infections/bronchitis aren’t severe enough to affect your ability to work long term. Well, I’ve had the plantar fasciitis for 15 YEARS. I’ve seen specialists, done meds, physical therapy, long-term steroid therapy, custom orthotics, cortisone shots, nothing helped. Doesn’t seem like it will magically get better at this point. It is so severe I have a noticeable limp and have almost passed out from the pain at times when I was forced to be on my feet for long periods of time.

As for the recurring infections, I’ve had chronic ear infections and bronchitis for many years, often getting up to six within a six month period. I’m now on my 3rd course of antibiotics this year (2018) for the chronic ear infections and bronchitis. Again, I’ve seen specialists, tried a host of medications and other treatments (both medical and alternative) and nothing has worked so far. The amount of antibiotics I have had to take has led to issues with antibiotics not working as well anymore, worsening IBS symptoms, and even episodes of MRSA, C Diff, and colitis which I had to be hospitalized for. These are not minor, fleeting problems.

To make matters worse, I have TRIED to work while fighting for disability. The last job I had (working only two days a week) I was let go from for missing work too much due to medical issues, most of which I was in the hospital or ER for, so they know I wasn’t just “faking”. I also tried being a greeter at Walmart, since it is about one of the only places that actually hires really disabled people and I couldn’t even do that due to my social anxiety, depression, and other health issues. I am not even fighting for welfare here, only the benefits I worked for over the years!

My Future Fund (supported by art and book sales!)

Recently I have been having quite a bit of success selling my artwork and I am so thankful! It means the world to me to know that people love my art and want to support my creative efforts! I do have something special I am doing with the proceeds I get from my art and I wanted to share that, so that if you are purchasing my art, you will know how you are helping me in multiple ways.

As many of you know if you follow my blog regularly, due to worsening chronic mental and physical health conditions, it has been hard for me to work outside the home for a while. I am hoping to get my SSDI benefits at some point in the future, but it can take years for that to happen due to backlog. I in no way feel bad for going after these benefits since they are not charity or welfare, but instead are the very benefits I paid into for years. I think it is ridiculous how long many of us have to wait to get a real person to make a decision for benefits we worked hard for over many years.

Due to my trouble working, I constantly fear that were something to happen to my husband, I would eventually end up homeless once the little bit of life insurance ran out. It is a terrifying thought that haunts me every single day. I am not guaranteed eventual approval of my SSDI claim, nor do I have any way to know for sure when I will find out since I am still waiting for a hearing date to even be scheduled.

So, I figured that instead of simply living in fear every single day without taking any real action to plan for the future, that I could take small steps to try to do what I can to provide any measure of security for myself. I have decided to start saving every bit of money I get from my art sales and book sales, to hopefully help build a nest egg to provide a little extra help if someday I need it. I have also been adding extra cash here and there that I manage to save to the “future fund”.

Reasons Why I Would Commit Suicide

 

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Kind of a downer subject today, but it is something I feel like I need to say. Please note I am not in any immediate danger, nor am I planning to hurt myself in any way. This is simply a post about WHY I would likely commit suicide if I ever did. I am sharing this in the hope that others will come to care about these issues and learn to empathize with people like me.

If I were to ever commit suicide, there are two likely scenarios why, and both have a lot to do with our often selfish American culture/government and the view that many people have that everyone should just “fend for themselves”, regardless of their actual ability to do so. I honestly cannot see myself committing suicide simply because of depression, loneliness, bipolar, Asperger’s, fibromyalgia, chronic fatigue syndrome, or any of the myriad other struggles I face on a daily basis. I have survived those things for years and will likely continue to do so. However, if I did ever kill myself, here are the two likely culprits:

  • Lack of medical care. This is a real possibility. In our country, basic healthcare is not guaranteed to everyone like it is in most of the developed world. Were I unable to afford treatment for my conditions (especially the depression, anxiety, fibromyalgia, chronic fatigue syndrome, and other chronic pain/illness conditions I have) I can see myself being simply unable to bear the pain for extended periods of time with no relief in sight. If you have never had a pain condition that unbearable you are extremely lucky, if you have had conditions like that, you likely understand how lack of treatment, and especially adequate pain relief, could drive you over the edge.
  • An inability to provide for myself or take care of myself without any help. Due to the many conditions mentioned above (and the associated conditions I didn’t mention), it would be extremely hard for me to provide entirely for myself. If my husband were to die and I was unable to get help for basic survival, my greatest fear of becoming homeless and penniless might indeed come true. There is a great lack of resources for many of the conditions I have, especially for Asperger’s. High-functioning is a title I semi hate because it gives people the illusion we don’t really struggle as much as lower functioning autistics or that we should be able to “fit in” with the “real world” and be entirely self-sufficient. Many of us simply can’t. We try. We fail. We fail again. And again and again… We panic. We often have ptsd and enormous amounts of social anxiety. We feel like little kids trying to “play” at being an adult. We struggle with selective mutism. We have meltdowns. We are intellectually intelligent, but often severely lacking in common sense and street smarts. We suffer sensory issues that neurotypicals can’t even imagine dealing with. Combine all that with the bipolar, and is it any wonder that half the time I don’t know what the fuck I’m doing in this world?

*Art by Maranda Russell

A Few Words About Applying for Government Disability Benefits

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(The below was written out of simple outrage from what I have seen happen to fellow human beings who are genuinely too sick and weak to work, but are expected to wait years for any help from the government programs they have paid into all their lives. I am fortunate to have other resources to survive on while unable to work, but not everyone is so lucky. Many homeless you see on the streets are actually disabled veterans and citizens who deserve so much better…)

Applying for government benefits, even those you have worked for and earned yourself, can be a ridiculously long, complicated, and humiliating process BECAUSE they design it to be so. They want to break you down, make you give up, make you give in. They expect the sickest and weakest among us to jump through hurdles on command, knowing it is almost an impossibility unless there are others propping us up.

Honestly, I think they hope that you will die on your own before they have to do a damn thing. I can picture Uncle Sam with fingers crossed, hoping you buckle under the stress and poverty, or even end up taking your own life from the hopelessness and despair of feeling useless, discounted, and vilified by a media that touts how “easy” it is to fool the system and labels those who are disabled as leeches or lazy.

Apparently discrimination laws don’t apply to the government either, since they clearly indulge in age discrimination, something every lawyer will blatantly tell you up front. Even publicly, you can find legal representatives in the field explaining why you are simply fucked if you dare get too sick before age 35, 40, or even 50. So if you are a young adult or middle aged person struggling with a chronic illness or severe pain condition, you had better tell it to get lost and come back in 10 or 20 years. Yeah, that works. After all, young people aren’t allowed to be sick or disabled.

You know, it is really funny, that many of the same people who are so public about being pro-life are also always trying to cut social safety net programs like disability or make them harder to access. If they could, I think sometimes that the government would perform adult abortions on those too weak or sick to continue to prop up their sick, twisted system. Getting rid of us all would be so much easier, wouldn’t it?