Now My Lawyer Doesn’t Even Think I Have A Case

Yesterday, I shut down my laptop with a sense of well-being and contentment. I’d gotten the boring editing of my newest short story out of the way, and was looking forward to doing that final hard edit today and getting that story out there. Then I got my mail.

When my my disability claim was denied, I called my lawyer, and we agreed that I would appeal the decision. It would take about a year, but, if I won, I’d get back-pay for the last three years that I’ve been out of work. My guy works hard, but we’re struggling. The week before payday our cupboards are bare, and, if we didn’t have chickens for eggs, and my parents hadn’t gifted us half a beef for helping out on their farm, there wouldn’t be anything in the fridge but butter and condiments. It’s that bad. But I’d discussed things with my guy, and we really needed that lump sum back-pay for things like a new roof (ours leaks), paying off my hospital bills (funny how I was denied disability for no ‘in-hospital’ stays, but no notice taken of the fact that I have so many doctors visits a month, we can barely meet the co-pays), actually buying Christmas presents this year. Yes, I have been ashamed and guilt-stricken for the last two years, because we, literally, could not afford Christmas gifts. I know my friends and family understand, but…damn, it stings the pride.

Then I get the mail, and there’s a letter from my lawyer, advising me to just file a new claim, that the small period of time that I was on Lyrica and actually felt better (before it started making me go blind), was keeping me from getting disability. I don’t think that was the only reason or even the major reason–I read the report. As I said in my last post, I did and said things that sabotaged my case. Things my lawyer should have noted in the quarterly reports all my doctors had to send in and told me to stop doing/saying.

Needless to say, I’m depressed. At first my guy didn’t understand that, if we file a new claim, I don’t get back-pay for the last three years. He also didn’t understand how getting a judgement in 90 days versus a year was a bad thing. Here’s the thing–I have cut way back on my doctor’s visits, because we. cannot. afford. it. I am not refilling some of my meds, as soon as I run out, because we. cannot. afford. it. I have not told my guy this. He does the bills, so he has to be aware of it, at least subconsciously, but he hasn’t thought about what this will look like to the disability people.

The records that the Social Security department will get, will show that I apparently don’t need as much medical help as a ‘disabled’ person should need. They’ll show that I don’t even need to see my doctors (apparently). They will show me saying I ‘feel better’ after a treatment with my pain doctor, because I just found out that saying you ‘feel better’ apparently means you’re ‘doing fine.’ I just found out last month that I’ve been sabotaging myself. Even though I told my doctors on EVERY visit that just sitting there in their office put me in pain, that having to put on clothes to come to the office hurt me so badly that it felt like I was wearing sandpaper over badly sunburned skin, either that didn’t merit a mention in their notes or it doesn’t sound as terrible as it is. I’m in pain all the time, folks! I can’t wear clothes, without being in more pain! I don’t know what else to tell them. All of my doctor’s notes for this new claim are going to be repeats of the doctor’s notes that got me denied disability in the first place, because I was still being stoic and trying not to be overly-dramatic, and I haven’t been to a doctor since then! Obviously, because I thought I was home free with disability, not because we. cannot. afford. it.

This sucks. This sucks big, green, donkey dongs. I had actually come to the conclusion that I was okay without one of my anxiety meds (because I ran out and involuntarily quit it cold-turkey, because we. cannot. afford. it. (sorry for the repetition, but it’s a recognized literary device. LOL!)), and I was doing pretty well. No night terrors, no panic attacks, no obsessive thoughts about death. I freaking need that anxiety medication now, but my guy doesn’t get paid for another week.

I’m going to file the new claim, because it doesn’t cost anything, and not filing is like just giving up, but I’ll get denied. I know I will, because nothing has changed. And it’s not even the money, per se. Oh, we need the money, but I feel like I’m letting my guy down, like I’m an anchor around his neck. He wants me to ‘try to stay positive,’ and I told him that saying that to a person with depression is like telling a starving person to imagine they’re eating. He tells me to trust him, that he hasn’t let me down yet. But, you see, I’ve let him down, and that’s what really plunges me into that dark abyss of depression. He’s great; he’s going above and beyond. I’m the problem.


woman-2609115_1920So, I was denied disability for the second time–a hearing before a judge. When we left the room, my lawyer was cautiously optimistic. The judge had seemed very sympathetic and well-acquainted with Fibromyalgia. I hadn’t really felt like I’d had to defend my diagnosis at all. Perhaps that should have been my first clue. My lawyer told me he wished all of his clients testified, as well as I did–so articulate and clear. Guess what one of the reasons given for denying me was. Give up? “Applicant was articulate and spoke clearly during the hearing, despite claiming to have cognitive difficulties.” I was having a good day, and I wanted to make a good impression. *Sigh* It really seems like you can’t win.

My therapist had warned me that I would be denied, so I had thought I had kept my hopes suitably low. I had not. Missouri, where I live, is the number one state in the USA to deny disability claims. Despite that, I know people, who had shoulder surgery ten years ago, got on disability, and are still on it, carrying on normal lives. I do not carry on a normal life. I am incapable of carrying on a normal life, yet it appears that I did not even convince my doctors, WHO DIAGNOSED ME, that I am disabled. Every time I reported that something like massage or a visit to the pain management doctor ‘helped,’ they took it to mean that I was ‘doing fine.’

I’m not doing fine. I’m never doing fine. I’m in constant pain. Pain to a degree that ‘normal’ people would think that they had something seriously wrong with them and be speeding toward the emergency room, if they experienced it. Oh, that was another thing they dinged me for. I didn’t have enough in-hospital stays. I was told by my doctors that there’s really nothing to be done for me, so why would I go to the hospital? Also, everyone knows people, who claim to have Fibromyalgia are just drug-seekers. That was sarcastic, if you couldn’t tell. I didn’t want that showing up in my records, so, no, I don’t go to the emergency room, when my pain flares up. I’ve never had a doctor suggest that I should.

It’s bad enough that, in spite of mounting evidence that morphine is metabolized too quickly, by some people, to be effective (and I have experienced enough surgeries to know that those 8 minute apart button pushes are less effective than a Tylenol for me), when I’ve had to go in for needed surgeries and asked for Dilaudid, I’m given the side-eye, and I’m sure, marked as a drug-seeker. I am not. I have lain there, in a hospital bed, in agony, waiting for the next 7 minutes and 57 seconds to go by, because morphine gives me approximately 3 seconds of relief. When I lost one of my kidneys, they needed to move my IV (I also have small, deep veins, so getting an IV is always a lot of fun.). After three “IV Specialists” failed to get the IV in, one guy finally shoved the needle into a vein right below my thumb. It HURT! It hurt so badly. Like, veins squirming, I’m going to throw up, PAIN. I begged them to remove it, and the doctor snottily informed me that I wouldn’t be able to get the morphine, then. I told him I did NOT care, that the morphine wasn’t helping anyway. He gave the go-ahead, with a ‘suit yourself, don’t come crying to me’ attitude. The hydrocodone didn’t blunt the pain as well as the morphine, but, since it lasted a good two hours, versus three seconds, I was okay with that. I still don’t think the doctor believed that I was happier with the hydrocodone.

Well, the upshot is that I tried to do everything I was told to do, but it seemed like all that advice was slanted toward me not getting disability. Also not helping–I cancel doctor’s appointments, when I’m having a really bad day, so they only see me on my best days, when I tell them my pain is at a 3 or 4 (and my 3 or 4 is a pre-Fibromyalgia 6 or 7). I’ve only had one doctor call me on that, which was when I realized I was sabotaging myself, but, when/if I ever told them I was at a 6 or 7, I wanted them to take me seriously. I didn’t want to be one of those patients you read about on reddit, who say their pain is at a 9, while they text their friends and eat a cheeseburger. If I say it’s at a 9, I want them to believe it. However, after reading too many stories from nurses and doctors, I don’t think they believe anyone.

I am blessed in having a supportive, significant other, who has a steady, if not quite adequate income to cover my doctor’s bills, and who believes me. He gets discouraged and resentful at times, when he has worked ten hours, then had to go feed cows at my parents’ farm (my dad has terminal lung cancer, and he doesn’t want my mom to have to sell the farm, and the only one, capable and willing to step up, is my guy), and he gets home, and I tell him, sorry, I can’t make supper tonight. But he still believes me, and he tries hard not to make me feel guilty about it. I feel guilty about it. I feel super-guilty about it. And now, I feel like I’ve failed him again, by not being ‘sick enough’ to qualify for disability, but being too sick to work.

I even considered giving up my writing. The one thing that I believe I can still do. My mother was like, ‘No! Never give up on your dream!’ I appreciate her support, and, if I get denied on the appeal, my writing is the only way I’m earning money–a whole twenty-three bucks now! But I wondered if the books I’ve self-published on Amazon would be used against me as proof that I don’t have cognitive issues. Would they even consider the fact that it took me a year, A YEAR, to proofread the first one, because there were so many days that my brain just would. not. function. Yes, I got it out there, and I’m pretty proud of it, but I don’t know of any job, where it would be okay for me to take a year on a project that would take someone else a few months or even weeks to accomplish. If I could even find a job like that.

The disability claims office think I could work as a housekeeper. Yeah, I worked as a housekeeper, when I was nineteen. I cannot work as a housekeeper. I can’t even change the sheets on my own bed. My guy does it. Yes, he would be a saint, if he didn’t take so much pleasure in tormenting and teasing me.

So, I’m appealing the decision. It’s something I discussed with my guy, because it will take about a year to get the results, and I’m not allowed to add anything to what is already submitted, unless it’s really significant and proves my prior claim. So, now I’m wondering whether I should try to get a job, which I will be fired from, when I can’t show up regularly, or if I should pray for something to go catastrophically wrong with me, so the damned disability court will believe that I would never have chosen this life, if I’d had any choice. That is so wrong–that someone would wish to be sicker–but I’ll bet I’m not the only one. I don’t actually want to be sicker. I just want a diagnosis that is cut and dried, yes, you are disabled, and no one could deny it. I know there are people out there scamming the system, so they have to do their due diligence, but I also know that there are people out there scamming the system, yet others, with real problems, are being denied. The system is broken.

Small Victories



I haven’t been doing much writing, and it’s really dragging me down. Writing is the only thing I do, that I CAN do, that feels worthwhile and productive. Oh, there are a hundred other things I SHOULD be doing–mostly cleaning–but I can’t. Physically, I just can’t. So, when my mental powers also break down, I’m left with pretty much nothing. As you can probably tell, the depression is strong in this one.

Depression is so insidious. It creeps into your mind and infects things a ‘normal’ person would never even think of being affected by depression. It’s too exhausting to make a phone call to make a doctor’s appointment. First, there’s the act of doing something, then having to speak to someone, a stranger. You have to look up dates and coordinate them with this stranger. You have to speak normally, when talking to this stranger. You have to make decisions. It’s all too much, and, if you don’t have depression (and anxiety–my anxiety also makes this all soooo much worse), you’re sitting there thinking, “WTH? People make dozens of calls every day!”

Yes. Yes, they do. In fact, I used to make dozens of calls every day at my job. And it was torture. I would email, when I could. Work my way up to it with about fifteen minutes of pep talk, but it was only my strong work ethic and the impossibility of handling the situation in any other way, that would get me to pick up that phone.

And it would kill me a little inside every time I had to do it. My heart rate would spike; I’d get tremors; my chest would go tight and full; I’d get nauseated and dizzy. It felt like trying to lift a two-ton, enraged crocodile, while submerged under water and holding my breath. The situation was fraught with peril, a sense of inevitable failure, anxiety, fear, and exhaustion. By the time the call was over–even when it went well–I would be a trembling, sweaty mess. When the calls went badly, I couldn’t make another call for the rest of the day.

It affected my work, along with all of my other physical maladies, which took their toll on me. And the more it impacted my work, the more depressed I became, because I wasn’t oblivious or stupid–I knew my work wasn’t up to snuff. I’ve always been a go-getter. I was competitive and took a great deal of pride in my work. I didn’t even know this person, who was too scared to make a phone call. Even calling that emotional upheaval ‘scared’ is doing a disservice to how awful I felt. Still do. I’m not working now, but, because of all of my disabilities, I feel like the least I can do is make my own phone calls to doctors and such. And, you know what, I can do it. I do it. Then I take the rest of the freaking day off, because that’s all my depression and anxiety let me do. It makes me feel weak and worthless, but, at least, I made that freaking phone call, and someone else didn’t have to do it for me.

When I first heard the phrase ‘small victories,’ I never realized how small a victory could be. I never thought I’d have to try to be proud of myself for making a phone call. Still, while it is a tiny, insignificant thing, it is a victory. A small victory.

Why I Started This Blog



I have another blog, over on my author website, where I talk about the joys and grievances of being an unknown author. However, a lot of my posts would be about how my chronic health conditions were affecting my writing, and it felt a little…whiny and depressing. If you suffer a Chronic, But Not Fatal health condition, you probably feel like all of your conversations/posts are whiny and depressing to other folks. I know I do.

So, I thought, why not dedicate a blog to this, so people know what to expect, when they read it. Folks interested in my writing won’t have to slog through my medical issues, and people, who are suffering from Chronic, But Not Fatal diseases/syndromes/conditions can just bop over here, and, maybe, it will strike a chord with them, help them feel not-so-alone. There are more of us out there, and there are quite a few Fibromyalgia-centric blogs out there, so there is more support online. However, what I see over and over again is that the support often isn’t there in real life. Sometimes it’s ignorance on other peoples’ parts. Sometimes it’s just that there IS no one in the sufferer’s life to help out. Sometimes it’s because other, healthy people have their busy, busy lives, and they don’t want to help. A lot of times it’s a combination of these.

I subtitled my blog “Chronic, But Not Fatal” because that’s what the first doctor to diagnose me with Fibromyalgia told me about the condition. I think she was wrong. No, the Fibromyalgia won’t actually kill me, but it will lead to my early death. You can’t get a medical professional to agree with that statement, but here is what my common sense tells me–I cannot exercise with any regularity or intensity, because of pain. I am overweight, because of this. I suffer depression, and eating comforts me. I eat unhealthy things, because celery sticks never made anyone feel better about anything. I suffer depression by heredity, but, also, because of my health. I am on medication for depression, anxiety, pain, and other medical issues I’ll get into later. I have only one kidney, due to other factors, which I’ll also get into later, so all this medication works that one kidney and my liver overtime. There are studies out there, showing that working a sedentary job takes years off your life. I WISH I could work any job, even a sedentary one, but my health makes it impossible for me to predict WHEN I can work. I spend twelve – fourteen hours sitting on my butt on my couch. This is NOT good for me, and I know it, but, when even standing sends shooting pain through your thigh muscles and feet, when walking is a challenge because your vertigo sends you crashing into walls, when you throw up, when you wait too long to take a bathroom break, when you’re in mid-sentence and forget what you’re going to say (not once in a while, but on a daily/conversational basis), you can’t work. No employer can be expected to work around an employee, who might or might not show up every day, throws up in their trashcan, when they do show up, and forgets how to do parts of their job continuously.

So, this is my life–I wake up in the morning, and I hurt worse than I did, when I went to bed the night before. Some mornings, I’m already too fatigued to brush my teeth and hair right away. I have to work up to it. I take a bath three times a week, because the pain of the water shooting from the showerhead hurts too badly, and I can’t stand up long enough to take a shower, without a real danger of a slip and fall. Also, the hot water of a bath soothes the pain. It doesn’t take it away, but it helps. After a bath, especially if I make the effort to shave, I am wiped out for the rest of the day. Yes, you read that correctly–the physical exertion of washing my stinky body and hair depletes all of my energy. I work on my writing (and, in case you think I’m exaggerating or just being lazy, I’ve cranked out two full-length novels and two short stories this year), but, some days, my brain just won’t engage. On those days, I watch Netflix, because I can’t concentrate enough to even read other people’s stories, let alone write my own. I try really, really, really hard to do the dishes and cook supper, because I live with a hardworking man, who does absolutely everything else. I am SUPER-LUCKY in this, and I know it. Lots of people don’t have even one supportive person, let alone one as supportive as my Jeff. Some days I can knit; other days, my fingers are stiff and hurt too badly to type or even hold my Kindle. I go to bed, hoping, wishing, begging that I wake up the next morning, feeling better. I rarely do.

Now, there is a lot more to my story, so, please, don’t assume I haven’t tried to help myself–I’ve tried so many things. Don’t assume that I’ve given up. Yesterday I couldn’t cope; today, I wrote this. I strive to accomplish at least one thing every day. Don’t assume that I won’t try more/different things in the future, because I will. Because this is no kind of life. Because so much of our self-worth is tied up in what we DO, and you don’t really understand that, until you CAN’T. Because I want to contribute. Because I was always the CAN-DO girl, and it’s killing me that I’m the CANNOT girl now. Because I don’t want the rest of my life to look like this.

Chronic, But Not Fatal – Ha!