#and i have like only enough in my account rn to buy essentials and food is higher priority than suncreen

[startledbirb]

,

[saferincages]

my illness and pain levels and fatigue have been so extreme and out of control for the past three-ish weeks (and really longer than that, I feel as though it’s been simmering badly under the surface for quite a while now and finally managed to break me down completely), and I’m sorry for not being here to answer messages or check my dash or anything like that recently. I basically haven’t touched my computer at all since I set up a couple of weeks’ worth of queue, looking at the screen has been too overwhelming for my headaches and sitting here is excruciating for my spine and I’ve even been having trouble typing without joint pain (not to mention my concentration/focus not being good lately). I essentially set the queue and climbed into bed, just trying to get some semblance of strength back.

I’d like to take a moment to specifically thank @sealwife, @sansasnark, @elizabethtudors, @fancykraken, @xxsparksxx, and @christinedaae for being the beautiful human beings and extraordinary friends they are - each of you ladies has reached out to me specifically and have inferred that I might not be doing well lately, and I apologize with all my heart for not being able to respond to you properly or give that attention back to you in the way you all deserve. Also to @desireearmfeldt, @someoneoffthestreet, @ohfantine, and anyone else who has left me thoughtful messages/replies/comfort. I feel as though I’ve let you down somewhat spectacularly of late, which would never be my intention - I know I haven’t been very good at friendship lately, and you’re all blessings in my life, and have been so for many years now - you give me reasons to keep being here and keep surviving, and reminders of strength and the hope of keeping one’s heart open. I love you and think of you always, even when I haven’t managed to say it often enough.

I’ve had a lot that I’ve wanted to write about for many months, and have not had the energy or inclination to do it, but I’m finally at the point where I think I can at least provide an overview.

First of all, before I get into my stuff, I want to say that Angel’s doing much better! It turns out - we think - that it wasn’t her pancreatitis flaring up, but rather that she was having an awful allergic reaction. There’s a dental treat that we’ve been giving her for a long time that helps her teeth, but recently I couldn’t buy them from the same place or find them at a reasonable price anywhere online, so we had started her on a different little biscuit, and something in that upset her system. I feel horrible, I would never have knowingly given her something that made her so sick. :( Fortunately, after we figured out what the culprit must be, she was only ill and unable to keep anything down for a couple of days, and after we got her little tummy more back to normal on a simple chicken and rice diet, she went back to her regular food. She’s been her happy, peppy, sweet little self since, and she’s been right at my side trying to take good care of me while I’ve been so sick myself.

A few of you know this, but back in July, I had my first initial disability hearing. I’ve been fighting for this for years, after being denied through paperwork alone twice. Finally being able to go before a judge was terrifying, but I had hoped maybe my long battles would lead somewhere. If you don’t know anything about the process, it is byzantine and cruel and borderline absurd at times, and after having seen it from the inside...I’m amazed that anyone ever gets help at all. Anyway, I walked into court that summer day, and they give you a CD of your records, everything that you’ve given them permission to gather - which, for me, was supposed to be every file and medical record going back to our car accident in 2005, the hospital visits, the months of physical therapy, and then the dozens of doctors and tests and procedures I’ve been through since the onset of my chronic illnesses. But, surprise! I open up the file, and all of my records have been purged, without my authority and entirely unbeknownst to me. No one ever warned me this would, or even could, happen, or we would have procured my records ourselves over the years. A warning - if you EVER think you’re going to need medical records, demand your own copies, because they can destroy them without ever alerting you that they plan to do so. My entire life, the existence that I’ve been reduced to, that I irrevocably lost my twenties to, that I lost college and my future and dreams to, it was basically all documented in medical records that now do not exist, which, in all honesty, felt like a death in itself. I stared at those blank pages, at those faxes where “record/patient cannot be found” or “record has been destroyed,” and barely managed to stop myself from bursting into tears. There’s no evidence of how being ill has taken my life. I sat in front of the judge as he flipped through empty pages, perplexed, and decided to postpone my case. I didn’t have legal representation, and he wanted to send me for more court ordered medical evaluations since there was nothing for him to really look at. My mom barely got me out of that room and into the bathroom before I had a full blown panic attack, clutching the counter in front of the sink and sobbing and barely able to breathe. 

And then I followed instructions, and went to my set appointments. I can’t begin to describe how banal the ‘tests’ are that a doctor gives you in these court ordered exams - can you walk once from one end of a small room to the other? can you raise your arms over your head or lift your legs while you’re in a chair for a few seconds? can you repeat back a sentence or a few words when they’re said to you? Congratulations, those standards likely mean they’re going to think you’re not disabled. The fact that you likely wouldn’t be able to repeat these menial tasks over and over again, the fact that you’re in constant pain or have a compromised immune system or can’t stand up for long without the risk of heart palpitations/dizziness/possible fainting or can’t possibly work a job or go to school because you’re too sick and you’re entirely unreliable - none of this is taken into account. The physician has to write down that you walked across that room and spoke complete sentences of your own volition, and immediately you’re seen as able-bodied. I know. I was also sent to a neuropsychologist (likely because the judge knew I was teetering on the edge of that panic attack).

Going through this means being asked invasive, awful questions that aren’t even necessarily pertinent to one’s disability (ie: why don’t you date/have sex? ...as if that’s any measure of ability or is even a priority of any kind when you literally are unable to leave the house. what do you do for fun? and so forth), being looked at with suspicion and accused, both subtly and directly, of malingering or attention-seeking, being prodded and judged and dehumanized and demoralized, all because you want the most minimal of help to simply survive. It is a horror, a lot of it is emotional/psychological insult on top of the pre-existing injury of being chronically ill, and it has taken a severe toll on me.

One of the doctors I met through these court appointments was really good, though, she was well-versed on CFS and POTS and even my GI issues, and she genuinely wanted to help me. I don’t have insurance beyond basic Medicaid, but she told me her office takes it. I was going to establish her as my GP to help with my case. Well, guess what? I called her, and suddenly was informed that her office had decided to no longer accept Medicaid patients. So, there goes that. I’ve lost track of the number of physicians that I’ve called in desperation who refuse to see me because they don’t take Medicaid. I don’t have a doctor’s help. (I could, and likely very much need to, go to an indigent clinic for basic care, where I could see an RN, but that isn’t an avenue that will help with a court case, because you’re supposed to have an established physician. I had to stop seeing my GP back when my dad dropped my insurance in late 2009, after I’d made several trips up to the hospital in Denver to have specialized blood tests and exams, so...that’s a long gap of time without a regular doctor’s care, and, again, now all of those records are gone).

Furthermore, even though you’re not required to have an attorney in these cases, it does notably help to have representation. I was given a list of lawyers to call and consult with after that preliminary hearing. Not a single lawyer would help me, because of my records having been destroyed. The first lawyer I called, in fact, told me it would not be “financially advantageous” for her to take my case. Most of them wouldn’t even call me back, but the few that did bother to respond to my messages would either tell me something along the same lines or apparently weren’t taking new clients. One told me to “start over,” which wouldn’t merely be a herculean task, it would be impossible and pointless. The entire reason I filed the case the way I did was because 1) I’VE BEEN INJURED AND SICK SINCE 2005, and starting over would be like saying I only just got ill in 2016, thus destroying my entire history and 2) because I physically could not work at an age where I was still considered under my parents’ care (it’s similar to the law that allows you to stay on a parents’ health plan?), the case was filed under their names and SSNs. I have never paid into Social Security because I haven’t worked, but they, of course, have, so the ‘loss’ of income that I then could have received (which, at most, would have been just under $700 a month, which may not sound like much, but anything would be a fortune to me considering I have absolutely NOTHING). If I started over, my case would be dead in the water immediately, because my parents’ loss would no longer be taken into account. I was left floundering and constantly crying after phone calls, after every doctor and lawyer refused to see me or help me, realizing these people who are meant to be in place to protect and assist people would do nothing for me.

My second hearing, the one that was meant to be the official proceeding, was in November. And even without a doctor or a lawyer, I went to court. I wrote an eloquent letter to the judge, which he even thanked me for, explaining my illness and what it has done to my life. We went in expecting to proceed. Another bizarre little part of this process is the ‘expert testimony’ - you see, the court calls on ‘witnesses’ to testify in your case. These witnesses generally have some basic knowledge of one of the aspects of whatever you deal with (in my case, they had called on a physical therapist and a gastroenterologist). Now, keep in mind, these are not people who have ever met you. They have never treated you. They have never seen your specific symptoms or limitations. The people they called on weren’t even in my state. I don’t understand how in the hell they expect this to help - no two patients or human beings are the same. Every illness, every symptom, affects people differently. So having general knowledge of a thing isn’t going to tell you about one specific, unique individual. I will never understand this, it will never make sense to me. But, of course, in my case, again, my records are gone! I don’t know what they were even supposed to be reviewing, other than the court mandated appointments I’ve been to over the past two years. Only, guess what? The GI specialist whose testimony was to be called first? He never even received the file that he was supposed to review and call in for my case. They telephoned his office and nobody had any information or any idea about it. So, yet again, the judge (by this point very frustrated) postponed me.

I contacted a couple more lawyers, to the same non-result. The last one I e-mailed was two weeks ago, because that’s when I got the next letter. My hearing was supposed to be today. The thing is, everything had changed. I suddenly had a new judge. The ‘witnesses’ were different. (No longer was a gastroenterologist on the case, for example, now it was an entirely different physical therapy office, but no accredited physician of any kind or any speciality, despite my many diagnosed illnesses). I sent back the paperwork, but I didn’t go in to court today. The case was dismissed out of hand.

I had what I can only classify as an emotional breakdown. I’ve been coping with suicidal ideation for years, I live with it all the time, like a quiet drip or white noise in the back of my brain, something I’m used to, and occasionally hear, and consider, and then filter out. Anyone who lives with constant suicidal ideation will probably tell you they get used to it - it’s like an escape hatch. You’re not going to use it, but you also know it’s there. Well, between Angel being sick and me feeling like it was my fault, my mother being quite ill herself (this is a whole other topic and she doesn’t want me to discuss it, so I’m trying to respect that wish), and the crush of agony and lack of sleep and constant illness that I’ve been dealing with from my own body, I just lost it. I haven’t been what I would consider genuinely suicidal or so depressed that I couldn’t function since 2009, but this threw me back into an extremely dark, dangerous, and self-harmful place. I felt destroyed, I felt like I didn’t want and didn’t deserve to be here anymore, that after all the time I’ve spent trying to advocate for myself, trying to fight, it was all boiling down to nothing. For a couple of days, I was honestly worried that I needed to get help, but I didn’t want to have to go to a hospital, I didn’t want to put my mom through that, so I forced myself to push past it alone. I don’t think I’m in danger of doing further harm to myself right now. I’m just so tired. Which in itself is a small, pointless statement. I feel broken down. It isn’t only the severe pain, the exhaustion, the sickness, the ever-evolving grief cycles that I live with as goals and dreams and ideals pass away, fade further and further into the past. This time, I feel that something has been taken from me. I feel like I’ve suffered repeated deaths of myself, of the girl I used to be, could have been, wanted to be, but this is a new type of death. I feel as though whatever I was trying to fight for - dignity? the right to keep surviving? the right to ask for help? the right to hold on to hope? the right to expect, if not kindness or understanding, the basic acknowledgement of my humanity? - has been stripped from me. Some essential part of my light, even if it’s only a sliver of it, has been snuffed out. That quote from Gone Girl, strange as that may sound, has been on repeat in my mind so often, but rather than having a person to put it on, it’s more existential - this process has taken my pride and my dignity and my hope, has taken and taken from me until I feel as though I no longer existed. I can blame the arduous system, but mostly that guilt and blame falls on myself, even if that’s illogical or I don’t deserve it. I’ve said this many times before, but I feel like a ghost, the spectral remnant of the girl who had meaning and worth and deserved to be here.

I have always had so much love in my heart, and have striven so hard to be compassionate, to give even the smallest fragments of good that I can to others, and I have failed at that a lot lately in trying to deal with and compartmentalize the desperation of all of this. I think finally falling apart, physically and emotionally/mentally, was the only response I could have. And it hurts me, too, seeing the cloud we’re all under - there’s so much hatred, exclusion, meanness, and violence happening around us. The current events have been so ugly. The hugeness of that has been tearing at my spirit as much as my own personal struggles have been. It finally all got to be too much.

I just...it’s hard to comprehend our society, how it actively works against those in need, how it excludes the most vulnerable among us, how it shames people for needing assistance to simply keep living, how providing food or medical care is seen as a luxury rather than a basic right. I wish I had the power to comprehensively change it, to lift up everyone else who has been in my position, to expose its faults and horrors, hold them up to the light, and transform them for the better, but I can’t, because I couldn’t even affect that change for myself. It kills me that anyone else ever has to feel this helpless and powerless and worthless. It makes my heart ache that the sick and injured and impoverished and disabled are seen as subhuman. We have a right to live, to nurture and be nurtured, to love and be loved. We have a right to be seen and heard. 

I wanted to write this today since today is finally the end of this fight for me, since I never got to that proper hearing to determine that fate, since it was tossed aside. I tried for so long to get someone to hear me or legitimize me or realize I needed help, and I lost. I figured documenting it now is all I had left to do. I’m feeling adrift and voiceless because I don’t know where to go from here. I’ve been carrying on with this fight and now I have to put it down, with nothing to show for it but the battle scars.