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.
Sunday, September 22, 2013
I've just gotten slammed with a bunch of bad today.
Over a month ago I fired my LTD lawyer. She was spending far more time telling me there was nothing she could do than fighting my case. She had excuses for why it wasn't worthwhile to hold the Hartford accountable for their illegal actions (breaking their own contract and breaking the law), for why they can't/won't put more effort into my case, and why it wasn't worth me getting upset that they weren't pushing harder for my rights. Well, I went to another LTD lawyer who waited until after they looked at my paperwork (even though I told them about my conditions before that) to tell me they only take injury cases. A month ago I sent paperwork to another LTD Lawyer. They were supposed to call me on Monday, then Wednesday, then at 11 am this morning to tell me if they'd take my case. They finally called at 4:30 pm when I left a voice mail saying I was frustrated and just wanted to know if they'd take my case or not. Well, after wasting a month of the very short window I have to submit an appeal, they're not taking my case. They said they can't win it, even though they know I'm owed and that the Hartford should be held accountable for jerking me around. Apparently they talked about my case, but they didn't decide if they'd take my case until right before they were on the phone with me. They told me they could give me names for 4 other lawyers who might take my case, but their #1 referral is the one who already turned me down! So now I have to contact the rest and wait while each decide, but I only have until Dec (I think?) to have the appeal done. Then when they deny me again (to think they'll approve at this point would be stupid) it means going to court. I have no money for that, but it's the only way to get paid. OMG I can't even explain how much of a kick in the face all of this is.
I also got an email from my parents. They're in North Dakota and are driving through tomorrow night (well, technically tonight because it's 4 am) and want to visit with me. I want to scream NO until I black out, but how can I tell them I have no interest even talking to them, let alone being in the same room as them? I can't handle what they've put me through my whole life and I've been in a constant health crisis for over 3 years now and they only make everything worse. I just can't deal with them. I can't even deal with thinking about seeing them. I've accepted they will always be the crappy people and horrible parents they are and nothing I do will ever change that. I've accepted that I will never get the support, love, or care that I've been desperate for my ENTIRE life. I've accepted that they will never understand any of this. But how do I tell them I can't have them anywhere near me because their wants and problems are far less important than my needs and my health, especially when they are narcissists who are incapable of putting my needs first? How do I deal with the backlash when I tell them I can't/won't see them? What do I do when my mother freaks out, leading to a blowup fight with my father, who will then blame me and shame me for being such a horrible person?
Add to it TOM just started and my body is freaking out from it. Everything I eat is causing my whole abdomen to hurt. I'm getting sharp pains and cramping in places that shouldn't be. Plus the whole PMDD thing makes everything else worse. It's hard enough to deal with having PMDD symptoms 1 out of every 3 weeks (thanks EDS for shortening the time between periods), but having so much crash down on me right during the worst part of it when I'm barely holding it together is really bad!
Also the freaky weather changes happening over the last week has my joints totally pissed off. I'm having dislocations, subluxations, popping and cracking so loud it echos (the wrist I dislocated the other day finally popped back totally in place this afternoon and it was so loud it hurt my ears and scared my cat), and I've had a dislocation in my lower back putting pressure on the nerve going in my left leg for 2 or 3 days straight. I have no money to pay for a massage to release the muscle cramps that hold the dislocation in place, and this type of dislocation is one of the most difficult for me to correct. The longer it's out the less control I have over my left leg. More than once I've completely lost the use of it to where I have to drag my leg. I think I can try to call the orthopedist to see if they will do anything, but it's doubtful because they didn't want to hear what I had to say and they don't understand EDS.
My social worker was here on Thursday and she told me to start packing. My house will be foreclosed the day after Christmas - 3 months away - and I have to be out about a month after that. But since that will be the dead of winter, I should be out before then. She doesn't even have anywhere to put me! But how am I supposed to pack when most days I don't even have the energy or ability to make food to eat or shower more than 2-3 times per week? How can I be expected to do everything for myself when I can't even take care of my basic needs? Why does everyone expect so much from me no matter how much time I spend trying to explain to them the reality of my conditions and how bad my symptoms are?!?!
I hate the days that crash down on me like this. I just want to fall apart and give up. I hate EDS! I hate that it has stolen my life from me. I hate that I have to face these problems alone (I appreciate my sparkfriend's support, but I also need in-person support that I don't have). I hate feeling like there's nothing good left for me. I can't even break down and have a good cry because crying causes rib dislocations, increases my constant migraines until they're unbearable, tears feel like acid, my stomach balls up into a huge knot, and my cat can't handle the stress so he gets really sick and I can't do that to my little boy.
I know no one can fix or even help with any of this. I know my sparkfriends wish you could help. These are only a few of my challenges. I will have constant challenges for the rest of my life. It is what it is. It hurts and I hate it, but I have to grieve it and find a way through it.
Monday, September 16, 2013
This link is on the Ehlers Danlos National Foundation website but it is not specific to EDS and could be used by anyone who lives with chronic pain and frequent bouts with acute pain.
I have pain. I have a lot of pain. Ehlers Danlos brings about incredible amounts of pain as well as a genetic disposition to having most painkillers and anesthetics be mostly ineffective. This means no amount of OTC painkillers will do any good for my pain, many prescriptions will be at harmful levels to do any good, narcotic painkillers are ill-advised because they worsen my non-stop migraines, and having any medical procedure is more complicated because they will be unable to numb local areas effectively (at the dentist's office I need a triple dose and more after 45 minutes) and general anesthetics must be administered at higher doses and for longer periods to be effective (nothing like hearing "let's get started" followed by "she's still awake" while your arm, neck, and chest are burning from the medications). In addition to chronic pain, the pain of frequent joint dislocations and subluxations, falling from episodes of losing consiousness (POTS/orthostatic intolerance/dysautonomia), and organ displacement from the connective tissue not holding them in place, is acute and incredible. (That is until the dislocations have happened hundreds or thousands of times and the nerves are destroyed so you can't even tell they're dislocated, leading to a whole slew of other problems.) Chronic pain plus frequent incredible acute pain plus a lack of medical options to control the pain equals a very difficult situation. You can see why the diagnosis of fibromyalgia makes me roll my eyes - no fibromyalgia pain even touches the pain when I have a joint dislocation.
At the same time, no one wants to constantly see us in pain. After awhile you learn to hide the pain and act like it's not there because people will walk away and ignore you if all they see is your pain and never the you they used to know. When you learn to hide the pain then people assume you're not in pain. When people and doctors assume you're not in pain then they don't want to believe that you need their help. It becomes a vicious cycle of never knowing when you're supposed to hide your pain and when you're supposed to take off the mask and show others what you're dealing with. The most ironic part is people who can dislocate their joints at will are frequently asked to do so in social settings as party tricks, making the pain even worse yet it's a sick pleasure for too many people.
I've learned to co-exist with my pain as much as possible. These 5 steps are things I've already done, but the reminder is helpful. I understand the cause of my pain, I understand that there are few treatment options, and I understand that I will have to live with increasing pain for the rest of my life. I've accepted that my pain is a part of who I am and that nothing can be done to completely relieve my pain. I know that my stress levels increase my pain and my pain increases my stress levels so trying to calm myself as much as possible will be helpful, so I have specific breathing techniques for specific situations and I've finally found a medication that - in me - works to slow my adrenaline release and thus ease my stress response. I've had to relearn what it means to live by re-balancing my life between what is most important: my life and my health, versus what must be done, and what I can and can no longer do (I still push myself too hard, but that's by necessity). I will forever be working on the coping step, as for many years I had no way to cope with what I was dealing with, so now I'm trying to learn. I frequently distract, but because of my ability to multi-task it's hard to completely distract. I'm hoping to soon start trying some mindfulness techniques, such as eating a mint like the article says, to refocus my mind away from my pain.
I hope this list helps others. Whether you have acute pain that lasts a few days or chronic pain, sometimes the mind is more powerful than medicine.
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