disability

Weekend Life Update: Depression, Meditation, Politics

| marandarussell

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I am currently experiencing a real downturn mood-wise, but I’m going to try to write a life update post anyhow. I tried to write a blog post yesterday, but was simply to depressed to complete it. Today I’m just going to sum up a few things that went on this last week, so hopefully, I will get something done today.

  • This past Wednesday, my husband and I tried out a new meditation group (new to us anyhow). I haven’t meditated in months at least, and it felt good to “get back in the saddle” so to say. Even though I don’t find that meditation is all that great at relieving my anxiety and depression symptoms overall, it does at least give me some perspective and allow me to step back a bit when I am feeling my worst and realize that it will pass if I just wait it out. That awareness is definitely beneficial to keeping myself on this earth when part of me wants to check out.
  • My blog post about not being a social media doormat really became popular! I guess many others struggle with all the bullies and haters that tend to hang out on popular social media platforms. Glad to see I’m not alone in this experience.
  • Today I am taking my bike and aerobics trampoline to sell them to a used sports equipment store. I have had to face the fact that I am not physically healthy enough to use them anymore and they are just taking up space. Hopefully someone else will get some use out of them. It is a bit depressing though to just give up.
  • I am so disgusted by American politics right now. I am disgusted with Trump. I am disgusted with his blindly loyal followers. I am disgusted by those on the left that display blatant hypocrisy and pretend to be “the opposition”, but are just as sold out to big money and corporation interests. I am disgusted by all the pointless warfare my country perpetuates. I am disgusted by the news media that twists everything and often outright lies.  I am disgusted by the lack of empathy many people have towards anyone who is different from them. I am disgusted by the fearmongering and scapegoating. I am disgusted that in the richest country on earth, Flint, MI still doesn’t have clean water, and much of Puerto Rico still doesn’t have power. I am disgusted that 40 million Americans don’t have health care and that 40% of the country can’t afford basic necessities like food and shelter. I am disgusted that conditions have deteriorated to the point that suicide rates have risen 30% since 1999. I am simply disgusted and feel powerless to help.
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Vacations: A Harsh Reality of Chronic Illness

| marandarussell

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

Social Security Disability Rant

| marandarussell

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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!)

| marandarussell

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”.

Flaking Out Due to Sickness

| marandarussell

Yesterday I was supposed to go to therapy, but I was feeling really sick and ended up calling off. Whenever I have to do that, I always end up feeling bad, like it is my fault that I have these health problems and often have to cancel appointments or activities.

Honestly, nowadays I don’t even schedule much of anything outside of medical appointments because I would rather not plan anything than have to feel like I’m letting myself or others down if I’m too sick, depressed, or anxious to go. It really isn’t a fun way to live, and it frustrates me. I often feel like I’ve almost given up on living a normal life and that saddens me.

On the plus side, I am fortunate to have a supportive husband and still have a place to live and food to eat even though I am too sick to work a regular job. I really don’t know how people like me make it without support, especially since it can often take years to get any help from disability. If I had tons of money, I would spend it helping out those who are in similar predicaments, whether they struggle with autism, mental illness, physical illness, or a combination of all of the above like me.

Feeling Torn in Half…

| marandarussell

Last night I had a really bad panic attack. The situation that triggered it is a complicated one that has me feeling rather torn in half. As I have probably mentioned before, my husband is a special education teacher. He is extremely devoted to his work and his students and loves what he does. This past Monday, he found out that one of his prior students, a girl who is now 19, needs a place to stay. My husband would like for us to take her in. I am really conflicted about it.

My husband and I used to do foster care, so I’m not unfamiliar with taking in strangers and looking after them, but the reason we had to quit foster care was my deteriorating health. That worries me about taking in a new, adult person who has both emotional and developmental issues. It also worries me because we recently downsized into a much, much smaller house and the autistic side of me is deeply worried about having no privacy or time alone which is essential to my well-being. Plus, I don’t know where we will move all the stuff that is now in the extra room.

On the other hand, I do feel deeply for this girl who has been through A LOT. My heart aches for anyone who already struggles with physical or mental disabilities and then has to add the weight of being abandoned or alone. She is living my worst nightmare in many ways and I can’t help but feel compassion for her. However, having never met her myself, I also worry about whether we would be a good fit or not. Often, that is something you just can’t tell until you live together, and if we do take her in, there is a good chance we would need to keep her at least a couple years until she graduates school and is moved into some form of independent living housing.

I feel so conflicted and anxious.

Reasons Why I Would Commit Suicide

| marandarussell

 

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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

Plantar Fasciitis Flare Up

| marandarussell

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The last few days I have had a bad plantar fasciitis flare up, the worst in quite a while. I have dealt with this awful condition since I was 19 years old, so for 16 years I have dealt with chronic foot pain. I wanted to take a moment today to explain what it is really like to live with this condition, especially on bad days. Here are a few descriptions of what I go through:

  • During a flare up, it feels like every step I take, I am walking with a huge, jagged stone piercing my arch, near the heel. After a few steps like that, it starts to feel horribly bruised and I start limping badly. Sometimes it feels almost like something in the arch of my foot “drops” and the pain starts then. It is a seriously weird feeling.
  • During flare ups, I find it hard to stand long enough to do even the simplest tasks. I have to sit on the kitchen counter while waiting for my pop-tart to toast. I have to sit on the floor or my bed while brushing and flossing my teeth. Showers are out, baths are in. Massages can help sometimes, but other times even that is agonizing.
  • When the flare up is really bad, even staying off my feet doesn’t help. The burning, aching, throbbing pain is constant. I do ice it and that helps a bit to numb it, but nothing else does a thing. Often I wind up in tears because the pain is simply unbearable. I hate to have to turn to narcotic pain relievers, but sometimes do. When the pain is constant and unyielding, I find myself fighting thoughts of suicide just to make it end.
  • Unfortunately, nothing really helps but staying off my feet and giving it time. I do take NSAIDS and muscle relaxers, but they take a few days to work (if they even do work). I’ve tried cortisone shots, but they didn’t help at all. I’m not willing to chance the risky surgery that can leave you crippled for life, especially when nothing else modern medicine has had to offer has helped.
  • Even when I’m NOT having a flare up, I have to be careful, because being on my feet more than a half an hour to an hour at a time can cause a flare up to occur. Even a day of regular grocery shopping can cause a flare up because of being on my feet too much. It truly is an intensely disabling condition for some people like me.

A Few Words About Applying for Government Disability Benefits

| marandarussell

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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?