Monday, August 05, 2013
(Yes, my blog title is to get your attention; but, if you stick with me for a moment you might understand why I wanted to grab your attention like this.)
Have you ever seen a contortionist? They bend and move in 'freaky weird' ways that look inhuman, while still being graceful and artistic and interesting. They grab your attention as they show how different they are from most people. Do you know why contortionists often perform as a family? Because the way to be a true contortionist is to have a genetic condition and train starting at a young age. The condition is called Ehlers Danlos Syndrome (or a similar condition like Marfan Syndrome).
I grabbed your attention so I can talk to you about Ehlers Danlos Syndrome, aka EDS. Even if you have heard of this condition or believe you know what it is, give me a moment to give you a little information. I'll try not to overwhelm you while giving you the chance to understand us zebras.
Zebras? What? The EDS community has adopted the zebra as our mascot and our awareness color. In medicine there's a saying: "If you hear hooves, think horse not zebra." This tells doctors to assume that a patient's symptoms are from a 'normal' condition instead of a 'rare' condition. EDS is a rare condition (all 17 forms together have an occurrance of about 1 in 5,000 people) where nearly every part and system in the body is affected, so our doctors need to stop looking for the horses and start seeing us for the zebras we are.
If you've heard of Ehlers Danlos, you've probably heard that it means the person has flexible joints. Doesn't sound that difficult, does it? It actually sounds fun - you can be the life of the party because you can bend in weird ways! Unfortunately, there's very little fun about EDS. Every system and part in the body is affected. Think about that: EVERY SYSTEM AND PART IS AFFECTED.
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This is only a short list of the effects of EDS. Ehlers Danlos is not just a joint condition - it is a collagen disorder. Collagen is the glue that holds the body together; there are many types of collagen, but it is in nearly every part of the body: skin, muscles, ligaments, tendons, blood vessels, the sack that holds each organ together, it is in the connective tissue that holds the organs where they should be in the body, and essentially your entire body is held together by collagen. If it has a place in your body, it has something to do with collagen.
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This means when the glue holding the body isn't working properly, the body falls apart. Joints dislocate and subluxate, skin is stretchy and/or extra soft, blood vessels and organs can rupture, the body's organs move out of position far more than they should, and the body's systems get 'out of whack'. There are about 17 forms of EDS and each form affects different types of collagen and sometimes in different ways. While one person can pull their skin away from their body with ease, others can bend their joints far more than normal, and others are at serious risk of rupturing organs and blood vessels with little or no warning. Since Ehlers Danlos is genetic, it is incurable (there may soon be the chance to genetically engineer out the defective DNA that causes it before conception through IVF, but trying to change the DNA throughout an entire body is currently impossible). It is also progressive, worsening as the person ages and as damage is cumulative (such as daily dislocations of some joints). How many times can you pull a rubber band before it breaks? We can ask that question about our joints.
Unfortunately, because this condition affects what's inside the body, it is not always visible to those around us.
As our bodies break down, the few treatment options are only supportive: surgery, braces, and mobility aids like walkers and wheelchairs frequently become a part of who we are, often well before 'our time'. I'm 32 and I use a walker and 6 braces. Some people end up in wheelchairs by their 20s, 30s, or 40s. Many endure dozens of surgeries before they reach middle age.
Since we can't use braces all the time (it would cause muscle atrophy), most doctors are hesitant to perform surgery until the problem becomes serious (there's only so many times you can tie a rubber band back together before you run out of space), and using a walker or wheelchair in a house can be more trouble than it's worth (like walking 20 feet to a bathroom), there will always be times when we can't avoid problems. Nothing like waking up to a dislocated rib, wrist, hip, or knee. Just getting out of bed can require the 'hand bone connected to the arm bone' form of anatomy lessons.
Or on a good day we can try doing a simple task, like walking to the mailbox, without using a mobility aid. Sometimes that's okay, but just by losing focus and taking one wrong step we end up in a world of hurt.
Some days it might be impossible for us to function. If we use our energy to make dinner we might not have enough energy to actually eat it. Getting out of bed, putting on clothes, and walking into the living room can require a nap to recharge. Some days our symptoms can be mild enough to run errands or even hold down a job; for some of us those days are few and far between. Many of us weren't diagnosed until we went from being 'okay' enough to appear normal, to being unable to ignore the symptoms. I wonder if I had known earlier, would I have been able to take it easy on myself so I wouldn't be incapable of working by 30?
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People who knew us before often think we'll get better and be back to who we used to be. Eventually they forget about us. Others try to understand but become overwhelmed by knowing we must change what we focus on in our lives in order to make it from day to day. Some of us have the support of our loved ones and a few friends to take care of us; too many of us have no one (me included).
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We zebras fight every day to overcome our challenges. We endure not only our symptoms, co-morbid conditions, and the ignorance of those in the medical community who don't understand us, but we are challenged by people who are prejudiced, inconsiderate, and ignorant to our plight. We need people we can count on to help with the little things, to support us when we need it, and to remind us that we are loved and valuable. Sometimes we need someone to pick us up and help us move forward.
It hurts to be judged and berated by people who stare, comment rudely, or ignore us when we ask for help. We are discounted when people tell us "that isn't possible" or "but you look fine". Some of my fellow zebras have had terrible things said to/about them by a person who refuses to pause and learn our truths.
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Through it all we must endure. We must fight. We must adapt. We must learn. We must forgive. We must ask for help.
We need your awareness.
If you want to know more about how Ehlers Danlos affects me, please ask. You can also search YouTube for Ehlers Danlos to see many people tell their stories and share their truths. Help us raise awareness to ease the struggles of so many zebras. (Gently) hug a zebra today!
Monday, July 15, 2013
I often wonder if things will ever get easier on me (it'll never be easy, but any easier would be helpful). Today was a harder day, for sure.
I sent an email to the new neurologist because I really feel he didn't do a good job when I saw him on the 1st. He also dismissed several of the things I was saying, did a crappy physical exam, and didn't seem to put effort into understanding how widespread the symptoms of EDS are. I basically said if he is unwilling or unable to put in the time and effort I truly need that he should let me know so I can find another doctor. I also explained why this is so important: I had an hour long crying fit this morning before I went to sleep, which created explosions of pain in the base of my head. Sleeping didn't help and when I went to the bathroom after waking up, after maybe 10 minutes of straining to get stuff out, my right leg went dead. As I tried to walk back to the couch I was dragging my leg and pulling it forward only with my abs. It felt like it was cased in concrete. After I laid back down I flipped on my stomach and hung my head off the edge of the couch; the top of my head burned but the base of my head felt a bit better. But every time I get up and move, especially bending over or going up stairs, it's horrible and I nearly go unconsious.
Unfortunately, just as I was about to send the email, my cat started freaking out. Tane was screaming for like 30-45 mins. I had to lock him in the bathroom with me and I tried to rub his belly, but he was so upset. He finally pooped then threw up and seemed to feel better - he stopped screaming at least - but he was still not acting normal. I knew it wouldn't be safe for me to drive, so I was calling and texting people to come help, but no one answered. I sent a message to the woman who's come by a few times with her son to help with house chores, and she was able to come up with her husband. They spent a few hours with me waiting for the vet to check Tane out, then brought us back home. It seems he was so upset about something that he became constipated which made him throw up (I just learned this happens). He might have been upset about a spider bite or some noise he heard, but I think he was upset because of my crying fit this morning. They sent us home with some painkillers that will calm him down and hopefully help him sleep - good because he wants food and can't have it tonight. If he has more problems then I need to take him to his regular vet for xrays and blood work. But I can't even afford the $132 it cost for tonight; no way I can afford all of that. So I'm hoping he's going to be okay once he rests and calms down. I downloaded a cat game of a mouse running around the screen for him, but he likes to just watch it and purr, so I've had him sitting near me watching it.
I am facing way too much crap right now. I just don't know what to do. I had to fight this huge increase in symptoms today to take care of Tane, but I just feel like hell. Nothing that can help me seems to be going anywhere. I feel like I'm in the middle of a crapstorm and I can't get out.
Thursday, July 04, 2013
Today is my 1,000th day on SP. Every day for the last 1,000 days I've logged in and participated in a variety of actions. Even when I was in a different state for doctor appointments, tests, and procedures or in the hospital, I signed on every day and did something. It was more important to me to sign on and spend some time here than to excuse myself for some reason.
I wanna say woohoo for me, but I can't. I feel completely defeated right now. LTD denied me, yet again. They completely ignored an entire group of doctors who support my claim and instead only contacted a few people who couldn't support my claim because it's not their specialty and they didn't do the tests. The Hartford has broken so many laws at this point, but I'm the one who has to suffer because the law will apparently not intervene for me. My LTD lawyer gets one more chance to step in and do something for the $4,000 I've paid their office. If she sits on her rear again, I'm going to be looking for a replacement. I'm already looking for a replacement for my social security disability lawyer due to the serious problems in their office. His staff only gives him the message that I called about 1 in 5 times, even when I'm calling and emailing they lose important paperwork I've sent them that should be submitted to SS and after 2 months when it's too late they finally send it in, and they do not send in the requests for appeals for over 2 months when I'm contacting them to find out what's going on. That's just flat out ridiculous. I'm so sick of people treating me like I'm completely worthless and that I should just disappear already. I'm sick of doctors treating me like I'm faking or not worth their time, all because they're ignorant and ill-equiped to handle my conditions. I hate having to constantly be looking for new doctors and new specialists because of their failure to understand that I'm unique and rare, not a liar seeking attention. They can't handle my case, but I can't afford to pay for the doctors who can.
I also feel terrible because of a dream I had this morning. There's this really freaky house that shows up in my dreams often, and more frequently lately. What happens in and around the house changes, but the design is always the same, even thought it's an impossible design. In the dream, I always own the house and there are always people around it, who think it's interesting but essentially hate it. As I show them around, I only live in a small portion of this big house, so the rest of it (including what should be my bedroom) is falling apart, full of bugs, and essentially unliveable. In the back of the house there's a huge sunroom that opens into a big store that sells fixtures (everything from sinks to appliances to cabinets), which I own part of the space but they use it and I get nothing for it, except at any time people can walk right into my house; but for some reason no one does (they never have customers). The store wants me to just give them the space and block it off from my house, but I want them to pay for it. Behind the house is a wooded area that opens onto a big lake that always has a lot of people having fun, but no matter how many times I invite people to hang out at my house, once they see it they want to leave.
This morning, I woke up in the middle of the dream and while still half asleep I tried to examine WHY this house keeps showing up. I fell back asleep and in total I dreamed about it for probably two hours (yes, dreams are real-time), but after I fell back asleep I took the time to dig around in the part that's supposed to be my bedroom but is destroyed and unsafe. I found clothes I forgot I had, a lot of items from different parts of my life, and tons of notebooks with memories written in them (which I read a little bit and most of it is bad memories I want to forget). My mother and sister were there, yelling at me, blaming me for everything that was wrong in this house, trying to take over and change everything to be the way they want it to be, and telling me I should just burn it down with everything of mine inside. They couldn't understand that my house was that way because I couldn't deal with it all, and I needed help - they yelled at me and said it was my fault that I screwed it all up and now they HAVE TO fix it because they don't want to hear me complain (even though I was proud of the part I originally showed them and they were the ones searching for all the bad parts so they could hate it).
After I woke up again and really considered it, I finally realized the reason this house keeps appearing. I can decipher the meanings behind dreams for anyone I somewhat know, but usually have a hard time with figuring out my own dreams. But this time it was obvious. The house is my body, my mind, and my life. Everything that happens in and around it is a reflection of what's happened to me. Every problem in this house, my failure to take care of it, to have anyone think good of or want to be around it, the opportunity for anyone to walk in and take over, how bugs have invaded and it's essentially destroyed, the disgust everyone feels when seeing it, is all a reflection of my life experiences. I can relate everything that's happened in these dreams in and around that house to horrible events, my medical conditions, the failure of people to treat me with respect or dignaty, and the terror I feel for what my future has in store for me. The fact that the dreams are happening more often now correlates to the progression of my medical conditions, as well as the increasing effects of all that has, is, and will continue to go wrong in my life. It's disheartening.
Yeah, so I'm in a bad place. I'm so lost. I don't know how to deal. I did finally set up a page online for donations and I'm hoping that will be some help. Since I don't want to solicit funds on SP, if you are interested in viewing the page, please send me a sparkmail and ask for the link.
Saturday, June 29, 2013
I sure haven't and never will due to my disabilities (and it doesn't interest me). But a few of my family members have done several bike tours around the US. If you'd like to read up on their adventures, check out their website: benthub.com/
They're a week into a trip from Wisconsin to Maine, or as far as they can get before some of them have to be back for work. I know one of them has to return home after 1 more week, and I think the rest are staying out for 2 weeks after that.
Thursday, June 27, 2013
What an up and down day, again! I met with a new gastroenterologist today, who was pretty good. He listened to me, paid attention, trusted what I said, and we came up with a plan. I'm going to have another endoscopy for a biopsy to see if the eosinophilic esophagitis is back, and if it is then I'll get a liquid steroid to swallow, instead of the steroid inhaler I used in the past, to treat it. He also told me I can increase my miralax intake as I need to, but considering the high cost he's giving me a prescription for the golytely (sp?) drink that's used when someone is cleaning out for a colonoscopy and use that like the miralax. He also sent in prescriptions for senna and docusate sodium - not sure if insurance will cover it, but we're gunna try! I'll start with one, try it for a few weeks, then if I need another I'll try that. He also seemed to appreciate my explaination of what I feel is causing my GP (Ehlers Danlos complication) and should it get bad again, then he'll be able to help me.
The sucky part of the day happened just as I was leaving to go to the appointment. I had hard time getting up and moving, so I was late getting out the door (I still got there in plenty of time, but I had wanted to leave earlier). It's a good thing I did, because as I was throwing on my clothes and getting my stuff together, I heard my RFID lock on my front door being played with (it makes certain dings and tones when it's being used). At first I didn't realize what was going on, but some guy had pulled up to my house and was trying to break in! I tried to sneak a peek through the window downstairs, but the bushes in front of the window blocked me from getting a good look. I didn't want to walk past the door while he was there (I have a hard enough time with stairs, let alone worrying about who was on the other side of the door!), so as he headed back to his vehicle I got upstairs but the garage roof was in the way so I still couldn't get a good look at the vehicle, and I didn't get a good look at him. Well he not only screwed with my lock (which is dang near impenetrable - it holds up to a glock handgun, a shotgun, even a sledgehammer - and since there's no keyhole no one can do a lock bump to open it), but he tried to force the door open. He never knocked on the door or rang the doorbell - he just tried to get in. He was carrying a camera though. I have no clue what he was doing here! The next driveway down has a house for sale, and if he saw the public notice that my house is going up for sheriff's sale on 7/25 (did he mistake that for 6/25? I need to get the paperwork in to postpone it) maybe he thought the house would be abandoned or something, but no one has a legal right to walk into a house without permission in either case. Not only that, but he didn't knock or ring the doorbell to double check if someone was home, so that's freaky. Well I waited until he was gone, checked to make sure he wasn't on the street, then walked out and called the police as I got in my car. I drove the neighborhood looking for his vehicle, but didn't see it. I had to get to my appointment, so the police called me back while I was driving and I told them what happened. They said they'd drive around and check things out, because I couldn't miss this appointment (I might not have gotten another appt until Sept). I tried to rush through the appt (like that's ever possible) and it took 3 hours to get back home. I saw no damage or any further evidence that he came back, but instead of running other errands like I had wanted to do while I was out, I rushed home and didn't want to leave again. UGH!
BTW, I'm glad I was here when this happened, not out, because even though I'm physically weak, I can scare the crap out of just about anyone just by my voice, if need be. I grew up being bullied and treated like crap by many of the people around me, especially my parents, which means now, when I have to, I have a loud booming voice with wild gestures that will scare off someone pretty well. Also, my cat would've been in danger had he gotten inside, so I would've flipped out and screamed bloody murder. Of course I could've just gone into a tirade about medical issues using techical jargon and creeped him out, or just told him I'm highly contageous and if he doesn't get the antidote in an hour he'll die, then send the cops looking for him at an ER. haha
So yeah, I had a hard time concentrating on the appointment because I was freaked out, but I got through it. I'm going to keep a close eye out for this guy and try to not let the fear rule me, but I'm going to have to try to not let it get to me. I have too many things I need to deal with to be terrified over what might have been a really horrible mistake this guy made without thinking. Still, anyone willing to send positive thoughts my way that this never happens again, I'd happily accept!
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