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.
Monday, August 12, 2013
The person who was coming to help me is apparently not coming anymore. So tonight I did some chores. It's been 6 weeks and things really needed to get done. Also, I'm seeing the new neurologist for the 2nd time tomorrow (the one I had to email to say I need my doctors to be team players and not blow me off) so everything I did today is going to DESTROY me for tomorrow - meaning he'll get to see my truths! Luckily I was able to get a ride for the appt. I'll be lucky if I can walk tomorrow!
I vacuumed my entire house (probably 400-500 sq ft of carpeting - I rarely move furniture so those areas are skipped - plus the corners in the bathrooms and kitchen), changed the sheets on my couch/bed, and washed the disgusting and smelly sheets, the blankets, and towels. I finished by taking a shower. Through all this I was doing Viggle and some mPoints.
Every joint is SCREAMING at me now. Even my achilles feel like they've been torn slightly - they hurt so bad. My legs have given out a few times, and earlier I had stabbing pains either in my liver or gallbladder, which was a new sensation. It's gone now and there's nothing any doctor will do, so I just get through it and move on. So many of my joints are now cracking, crunching, and grinding that a few times I had to make sure I didn't run something over with the vacuum because it's so loud and sharp. This is why I'm NOT supposed to do this stuff, but when no one else is going to then I have to. Let's hope I can actually wake up tomorrow!!!!
I'm planning on cancelling my ARMHS appt on Tues because there's no way I'll be recovered enough to not bite her head off. If I can be recovered by the end of the week I have many more chores to do around the house (plus my house should be vacuumed once a week to try to keep the incessant cat hair under control) - like taking out the recycling that's all over, cleaning out the toilet that's covered in mold again, etc. I don't give a crap about most cleaning projects because it's just not feesible for me, but the moldy toilet is literally making me sick (my bottom is affected badly by sitting over that mold several times a day) and the cat hair is hell on my allergies.
What really sucks is EDS is progressive, so it's entirely possible that within a few years I'll be completely unable to do even the small amount of stuff I do now and I will live in absolute filth. Not a very appetizing situation, but the county doesn't seem to give a crap about helping me out. So I'll do what I can for now and when I can no longer do it, then so be it.
EDIT: The ride that was supposed to come get me didn't. They're supposed to call ahead of time to say if they're on time, a littl early, or a little late. They were supposed to be here at 10:30 so at 10:35 I called to find out what was going on. The driver was at minimum 30 minutes away, which would probably be closer to 45 minutes considering traffic and traffic lights. There's no way he could make it to my house and to my appointment safely on time! I called the schedulers to tell them what happened. I just had to risk it and drive myself, no matter how unfocused, exhausted, and pained I was. I left at 10:50 and was checking into my appointment at 11:21 - 9 minutes before my appointment - and by 11:40 the doctor was in the room. There was no traffic holding me up at all. If I had waited for him to arrive at 11:00-11:15 I would have missed my appointment completely! The good thing is that since I cancelled I wasn't getting picked up at 12:30 - there were some issues happening as I was trying to check out at 12:15, plus I had lots of new appointments to schedule, so I didn't leave until 1:00! The woman who checked me out felt bad I had been sitting there for so long (I was there longer than I was with the doctor) that she gave me a free parking pass as an apology. That saved me $5. If I had to catch the ride I would have been freaking out because she didn't even get to me until 12:45.
Now I'm home and laying down. My body is throbbing and I'm so crazy tired. I want to attempt a short nap, but I'm not sure if it'll happen. I only got about 3 hours of sleep last night, and after all the stress today, plus every aching, burning, and stabbing pain - AND now that I'm having 2 MRIs done on Friday and 1 seated MRI (checking for problems with blood flow to the brain while seated, which is totally different than laying when it comes to EDS) on Saturday - I definitely don't want to see my ARMHS worker tomorrow, so I cancelled.
Lastly, the neurologist had a student with him today, so this student had the chance to see a unique case. The appointment went better, and we are moving in a direction. I found out that I'm 1 of 3 people with EDS who is being seen in that dept, so hopefully we're all teaching them about how unique this condition makes us. The best way doctors for doctors to learn about the challenges of rare and incredibly unique conditions, and really understand them, is by seeing several similar patients who can help them see what they've never thought possible. If my struggles helps other patients in the future, then it makes me feel a little better about what I deal with.
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.
(Click for full sized image: www.facebook.com/photo.php?fbid=2116
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.
(Click here to see full sized image: www.facebook.com/photo.php?fbid=2125
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?
(Click here to see full sized image: www.facebook.com/photo.php?fbid=2165
(Click here to see full sized image: www.facebook.com/photo.php?fbid=2164
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).
(Click here to see full sized image: www.facebook.com/photo.php?fbid=2145
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.
(Click here to see full sized image: www.facebook.com/photo.php?fbid=2045
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.
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