Tuesday, October 22, 2013
The best way to NOT give someone SSDI is to pick a doctor to speak against the claimant at the hearing who can't even pronounce the conditions, let alone know how they're diagnosed. That way they can say they don't believe you have the conditions and are fully able to work. Then, to really stick it home, have the judge say that since my reports of conditions are unfounded, that they must request that my primary doctor (who is about to go on maternity leave) needs to write up an explanation about why she thinks I have these conditions and am unable to work (doesn't matter that she can't diagnose these conditions and that's why I have so many specialists!). If she can't/won't then they will pay another doctor to look at me and say whether I have the conditions or not. And why would a doctor being paid for by SSDI say that I have conditions that they probably have never heard of? After all, they get paid no matter what they say, so why should they do any research or learn anything when they can just say "Nope!" Oh yeah, and apparently everyone is claiming I have a somatic disorder and am making all of this up, so they're under the impression that I should just be highly medicated with psychopharmacology (no matter how suicidal those meds make me) to shut me up so I can go back to work. Doesn't matter what my body does, because it's all in my head. Yes, because clearly joint dislocations and subluxations are caused by being depressed.
And it's even more helpful when your freaking lawyer does not speak a word in your defense! He never said anything for me! He never asked a question, never pointed out any flaws in their case, and he barely even looked at me or spoke to me!
Please remind me again why the freak I keep fighting and pushing myself? Why do I give a crap? Why in the hell should I even try when clearly the medical community and the legal community are both under the belief that NOTHING I SAY IS TRUE AND I'M JUST A LAZY JERK WHO IS MAKING STUFF UP FOR ATTENTION?!?! I was born and bred to suffer so how dare I ever believe that I'll get anything but? Heck, on the way to the hearing the sky was red - I even commented how I hoped that it wasn't a bad sign for me. Clearly I was wrong.
Tuesday, October 22, 2013
Tomorrow morning is my SSDI hearing. I have no idea how I'm going to make it through the hearing. I'm not even sure if I'll find out a yes/no tomorrow or if I have to wait for the official judgement. My hearing starts at 9:30, but have to be there early to meet with my lawyer, have to drive there (in rush hour), and getting up early enough to be ready for when my social worker comes to pick me up - so I have to wake up about 6-6:30 am to be ready. Too often I don't fall asleep until 5 am, so I've gotta take meds to help me sleep, which will not make anything better tomorrow. My exhaustion is ridiculous.
Today I saw my vascular specialist about why I can suddenly hear my own heartbeat in my ear, sometimes so loud I literally can't hear anything else. Not really worried, but wondering what's up. (Considering I called early last week just to ask "should I see him?" and his scheduler got me in today as the last appt of the day from a cancellation - wondering if he snuck me in - instead of making me wait the 6+ weeks he's booking out, they took me serious but aren't seriously worried.) We made a plan of attack that he wants me starting ASAP. The unfortunate first part is stopping the Lyrica. It's not really doing any good to help with my pain, but come on! I already am immune to most painkillers and the 1 that does help shuts down my nervous system making it so I can't feel much but I can't function at all (I rag doll twice in the 30 small steps to the bathroom). 2nd step is he wants me seeing an ENT - ASAP (if I can't get in before the end of the month I'm supposed to let him know so he can pull strings) - to see if something went wrong in my ears. 3rd step is getting yet another look at the blood vessels in my neck to check for aneurisms or blood clots or something funky (doubtful but worthwhile 'JIC', even though I just had them looked at in August). He asked my thoughts, and I said my best guess is it's due to EDS, possibly from the suspected organ prolapse pulling everything else above it down too or just from the current meds I'm on that have increased my blood pressure to normal which is allowing blood to back up in my head when my neck is bent.
Best part of this specialist is that he not only listens, but he knows I know my body and my conditions so he asks my thoughts and worked with me to create a plan of attack. Though he thought I was talking a little faster than normal (for me) so they drew blood to check my thyroid. It's been tested dozens of times, but why not check it again? Perhaps getting my adrenaline under control might show some changes in other hormone levels.
I am so stressed I want to curl up in a closet and pretend the world doesn't exist. Unfortunately I can't. I have 18 appointments this month. That doesn't include picking up meds, getting new braces, trying to get a new walker and a cane, dealing with insurance companies, dealing with lawyers, dealing with county agencies, being harassed DAILY by wells freaking fargo, having no idea where I'll be living in 3 months, not having enough energy to run errands or make food to eat, etc etc etc. Being told my new LTD lawyer wanted a complete list of symptoms for all of my conditions was so overwhelming I couldn't even deal, so I had to have 2 friends help me (thanks Sherry!) to realize that just reading the list is overwhelming! I just can't even deal. Having no money at all doesn't make anything easier! My social worker is even telling me to start packing up my house, but when I bend over I pass out! I can't pack! Yeah, where's the closet I get to curl up in to hide from the world?
Thursday, October 17, 2013
I have 5 appointments with the orthopedist this month. One was last week and I had another today. The doctor I'm supposed to be seeing isn't even coming into the room (the first appointment with "her" weeks ago she came in for 10 minutes and haven't seen her since) her fellow is the only one seeing me. It seems like a cop out. They told me they'll only see 1 joint per appointment, so last week was for hips (and SI joint), today was for back, then I planned on wrists, knees, and shoulders - but I could switch to any joint I want. Today he seemed annoyed that I was back again, so I pointed out that they will only see me for a half hour and 1 joint at a time so he will see me several times this month, and he wasn't happy. The appointment went from bad to worse. He flat out SUCKS at the physical exam (I've had enough exams to know when they're just faking the effort or when they're really paying attention to what they're feeling) and really has no knowledge about anything that's not a sports related injury (which is why I've asked more than once to see someone who is NOT at a sports medicine clinic, but I keep getting sent back there). I was talking about how my back has been bad for years, how my mother (who has bad joints from EDS, but not even close to my severity) had 2 back surgeries in her 50s, how I frequently have to pop my back because it seizes up and is in pain, and I want some ideas about how to deal with it. He couldn't wrap his head around it. He just kept repeating that I'm not bad enough to need surgery and he has no idea what would constitute "bad" enough to do anything at all to treat the progression, and eventually he just said he doesn't have any more time and walked out of the room. He said to not come back unless an injury happens to make it worse; clearly he completely missed the part when I tried to teach him that EDS is progressive and can only be slowed through bracing, surgery, or some form of treatment. I asked what signs or symptoms will be "bad" enough for him to see me or if I should just come back every year, but he had no response except he didn't know. "You know what it's like to live with this, but I don't." Well, it was bad when I was in my early teens and it's even worse now, so if it's not "bad" enough, what is bad enough? He talked over me, wouldn't answer my questions, and seemed to have no concept about what it means to have back problems without a serious injury. He even went so far ask to ask if I'm seeing a therapist, as if I could somehow make my joints dislocate and grind bone against bone by being depressed! Somehow he also has the idea that having joints that easily dislocate means I'll have an easier time when aging... as if somehow having early onset osteoarthritis and extensive damage from dislocations is good for the body. Eventually he just up and left the room, so I walked out, shaking my head. I couldn't believe how unprofessional he was! He's not even the doctor I'm supposed to be seeing - she's not even stepping foot in the room! As I was putting my walker into the car, I saw both of them and 2 other people were in an office talking (the side of the building is all windows so I could see in the room). Oh how I'd love to have known why he had to rush out of the room to talk to his coworkers, instead of seeing another patient.
Oh and I dealt with all of this (without losing my temper) after only 3 1/2 hours of sleep and a half hour drive to get there. I got home and just wanted to scream. But I looked up the orthopedic office at the U of MN and called, yet again. Instead of saying what I needed, I said I didn't know if she could do anything to help but I just had a really bad experience with an unprofessional doctor and I want to see someone else. I ended up talking to the nurse for a spine specialist. She took pity on me. I'm going to see him on the 7th about my neck, back, and SI joint to see if there's anything he can do. He prefers to treat without surgery, sticking with injections and pain killers, so we'll see if he's at all helpful considering I'm immune to most painkillers and sensitive to steroids. I'm assuming he'll just recommend braces. Hopefully he'll at least take me serious. The nurse said she was also going to ask some of her coworkers for ideas about who to see for my other joints (like wrists, knees, ankles, elbows, etc). I told her I don't care if I have multiple doctors for different areas, I just need doctors who are more willing to help, not just tell me to do PT and take painkillers. Since I have bone on bone grinding and signs of cartlidge degeneration (I can fold my nose in half to the side and my ears fold back on themselves until blood flow is cut off), no amount of PT or steroids can fix that.
It's just so frustrating. I'm so exhausted. Thanks to the wonderful help from 2 friends I was finally able to give my LTD lawyer a list of symptoms for all my conditions. That's an extremely long list with lots of overlap. Even taking out the symptoms that I do not have and do not expect to have in the future (things like stunted growth and learning disabilities, for instance, are definitely not symptoms I have or could have), that is a ridiculous list to attempt to live with! Just reading it made me wonder how I'm still alive.
Gotta try to get some sleep tonight (hahaha yeah probably won't happen). Tomorrow I'm meeting with a new therapist who specializes in EMDR (Eye Movement Desensitisation & Reprocessing). It's usually used to treat PTSD and to reshape the disturbed and damaging core beliefs that were taught to children who were raised in dysfunctional environments (such as being told you're worthless and don't deserve to live). First appointment is to try to figure out a plan, like deciding some of the most prominent events to focus on and learning more about how the process works. I'm hoping this will be helpful. I have a LOT of memories and events that have destroyed parts of me, and I'm hoping to try to gain some of me back by reprocessing the events.
Also, my SSDI hearing is on Tuesday. I am terrified about what will happen and have no idea how I'll be able to physically and mentally make it through. Guess I'd better start getting some sleep and resting before it!
Wednesday, October 02, 2013
WARNING: Don't read unless you have a strong heart. My pain has been poured out into a mess below.
I've reached the end of my rope. I've hit the limit of things I can deal with. My ARMHS worker was on her way and my lawyer emailed me asking me to write down all of my symptoms for most of my conditions. When I said that's just too much for me, he said he really needs it so I need to do it. Why does everyone who is supposed to help me get to DEMAND that I do things I CAN'T do before they'll even consider helping me? I'm in overwhelming pain, I'm so far past exhausted, I can't take care of my basic needs, yet everyone gets to demand things from me.
Then to top it off, 11 days after my last period started, I'm getting significant spotting again, the same as when my periods start. 11 days between periods! And I have PMDD to deal with! It's just too much! It's far too much! I just keep crying. I was able to distract for a few hours while Viggling, but otherwise I just keep crying; the tears just keep coming. I just can't even cope anymore. This stress will be what kills me. I guarantee it.
Plus something's wrong with my hip (probably the SI joint) so my left leg is turn in and keeps going dead. I don't even have the energy to stand up long enough to make enough food for me to eat. Both of my knees feel like they've been beaten with sledgehammers. My jaw keeps locking and hurts ridiculously bad. My allergies are going crazy because I haven't been able to vacuum or change the sheets on my couch/bed in something like 2 months. The doctors all tell me to do PT as if it's a magical cure to everything, completely ignoring me when I say that even 10 minutes of gentle PT can make even getting up and walking 30 steps to the bathroom feel like climbing a mountain. My ARMHS worker and therapist want me working on skills to deal with my mental health issues, which I can't do because I can't get past the idea that the only point for me to be on this earth is for others to use and abuse me, because I have no rights and must always sacrifice myself for everyone else. Because look at what I have to deal with! My rights are being taken away from me and everyone is DEMANDING I do what they expect of me RIGHT THIS MOMENT NO MATTER WHAT OR WE WILL NEVER DO ANYTHING FOR YOU. And I do it all alone. My own family treats me like a piece of garbage they can destroy at any moment and that my only worth is when I can stop being a piece of garbage and do everything they want - which is impossible. When you're nothing but a possession and punching bag for your family and most of the people around you, what's the point?
I can't even cope anymore. How will I deal with being homeless in a few months? What about a year from now when the EDS has progressed to the point that I can't do anything for myself? How will I deal with being torn to pieces at my SSDI hearing in 3 weeks? The only way I've even made it through the past few months is by telling myself every week/day/hour that if I just ignore life for the rest of the day I can always give up and be done tomorrow. I'm not living, I'm not functioning, I'm not surviving, I'm not even existing. I'm literally just taking up space at this point. I actually feel like I'm committing a crime just by asking for help because I'll never again be the person I once was; and even then more people hated me than anything.
I know no one here can do anything to help me. The people who can help me want me to sell my soul before they will, while the people who would be willing to help can't. I've spent my entire life doing for me because no one else would. It is what it is and it's not going to change because life is not a fairytale - no one will come rescue me from my hell. Unfortunately for all of you, I just wanted to put my current state of hell out there so someone knows, not just me. I'm sorry.
Monday, September 23, 2013
Today's actually worse than yesterday, but in a different way. I feel like I'm coming down with the flu all of a sudden. I don't ever get colds or the flu; I don't even crack a fever for more than an hour for anything (my immune system is really screwed up: I have increasing allergies but it doesn't fight back against real problems like a cold). So this has me worried. I'm hoping my symptoms are just going haywire from the stress, but this is insane.
The symptoms have been getting worse all day. Every single joint aches and feels like they're stuffed full of cactus barbs. TOM has my body thinking I'm a stuck pig (it's never this bad). My intestines were so bloated that I couldn't even bend forward (it's gone down some but still hurts ridiculously bad). I keep feeling like I'm hungry and going to throw up at the same time. In one ear the ringing has almost totally taken over and in the other, half of what I hear is the blood flowing through my arteries (it's a whoosh whoosh that is driving me crazy - my doctors know this happens but have zero idea what it means or what to do about it). My head feels like someone lodged an axe in the back of my head and is twisting it. I can barely move my neck. My face feels like I've gone 20 rounds in an MMA fight and my jaw feels like it's been busted into a dozen pieces. I'm having a hard time breathing because of chest pains (common with EDS). My left leg is continuing to get more numb and less responsive. Every time I move my legs or hips there's explosions of pain at the base of my spine (where the lower back meets the butt) from that freaking dislocation. Every time I stand up or move my muscles want to give out and my brain wants to go unconsious.
Add to it that my mother is a narcissistic b!%@#. I emailed her this afternoon and only said "I'm sorry, I can't." That was it. I am sick of explaining to her why I can't do what she wants me to do when she will just throw a fit about it anyways. It doesn't matter if it's because I have no interest in dealing with her at all or because my symptoms are so bad that I literally can't deal with being around anyone, she will always make everything all about her. She predictably responded in a way that was all about her. It's all "I" statements and guilting me. Telling me she's crying every day because she doesn't know how I'm doing. Saying "we" should put our struggles behind us and be mother and daughter again (she has flat out refused over and over again to see the mental health help she needs to ever be a functioning human being). Most people would read it and not understand what's really there, but I know every trick in her playbook. No person on this planet can go from telling their severely ill daughter that she needs to stop complaining (aka mentioning in any way) about her symptoms and conditions because it is FAR worse to be the mother of a sick child (I was 30 at the time!) so I need to comfort HER, to being the caring and loving mother who will support her child through everything in just 2 years without having sought out professional help. Case in point: she says she's been following some people with EDS online and learning about the symptoms, yet she expected me to drop everything and spend a few hours with her and my father without any thought whatsoever to my symptoms and with no notice. Then when I give no explanation as to why I won't see them it doesn't even cross her mind that perhaps my symptoms were bad enough that I was not physically capable of leaving the house or playing host to them in my own home, because her only thought is that I'm purposefully hurting them! Reading this email just shoved in my face all over again how much my family is dysfunctional and wrong and pathetic. It hurts in ways that there are no words for. This woman has made ME take care of her in one way or another since I was a little child. This woman was never the loving, nurturing, caring, and supporting mother that every child deserves. This is the woman who kicked me out of my own home when I was barely able to walk, was underweight and just starting IV feedings, and I had no where to go - all because I didn't say something she wanted to hear in the way she wanted to hear it! I have come to accept she will NEVER change and has no interest in changing (she says she's not broken so she doesn't need to be fixed - it's up to everyone else to do what she wants when she wants it in the exact way she wants it without her ever having to explain anything in any way). I am DONE expecting anything from her. I hate it but it is what it is. I will not ever count on them for anything of worth. But to have this email be thrown at me while in the midst of yet another massive kick in the teeth (see my last blog) just makes it so much more profoundly painful.
Tomorrow I should be calling new lawyers to ask if any will take my case. I should be calling my orthopedist to see if they can see me about this dislocation that's screwing up my leg. I should be doing paperwork. I should be working on items my therapist and ARMHS worker wnat me to work on. I should be packing up my house. I should be cleaning my house and changing the sheets on my couch/bed. I should be doing so many things. All I want to do is sleep through the entire day and pretend like the world isn't crashing in on me.
I can't stand feeling like this. I want to be able to take care of myself again. I don't want to have to rely on others who aren't all that interested in helping me. It's disheartening to know I'm only 32 and my symptoms will continue to progress the rest of my life. There's no hurt quite like that of knowing that the people who are supposed to love you and support you the most are incapable of doing so and put requirements on you that you can never and should never have to fulfill. Every dream, hope, and wish I've had for myself has been stolen away by a stupid genetic condition that most people don't even know exists and many couldn't care less about. How is it that so many people can expect and demand things from me when I could easily lose consciousness, fall, hit my head, and not be found for days or even weeks because no one would even know?
Then there's that moment you realize you've fallen to pieces because you're not as strong as you pretend to be. There are only so many battles and challenges one person can face on their own before they have to call uncle and focus only on surviving the most pressing problem - the physical symptoms of faulty DNA slowly destroying the body. So I'm going to try to force myself to stop crying, pop a few ribs back in place before they make it impossible for me to breathe, and try to sleep off some of these stresses and symptoms. Everything else will have to wait for another day.
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