tag:blogger.com,1999:blog-79025048319065034582024-02-18T22:38:35.500-07:00Make This Look Awesome...Putting a positive spin on chronic illness... from someone who has been there..http://www.blogger.com/profile/00695167212487592726noreply@blogger.comBlogger365125tag:blogger.com,1999:blog-7902504831906503458.post-2023065494361834152019-06-17T22:08:00.005-06:002020-10-03T18:40:47.995-06:00Esoteric Pain<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Esoteric</b> (adj.) - designed for or understood by the specially initiated alone<br />
<br />
Chronic pain is transformative, of that there is no doubt (<a href="https://www.painresearchforum.org/news/32409-brain-activity-shifts-pain-becomes-chronic" target="_blank">Brain Activity Shifts as Pain Becomes Chronic</a> Archive link: <a href="http://archive.today/mwlhV">http://archive.today/mwlhV</a>). What it turns us into, is not wholly under our control, but what <i>is</i> under our control, we have a responsibility to master. Chronic pain initiates us to a world that others cannot understand. We few, we lucky few...<br />
<br />
I've lost a lot over the years, and that took me to a dark place. Things are so desperate now, that all bets are off. The cannabis, I was using for pain control, is now causing me to break out in hives. I'm already on an elevated dose of prednisone for the weight gain, and I can only take one Benadryl at a time because two makes me feel NOT good. I have nothing else for the pain: I'm already going through 300 ibuprofen a month and that is what my endocrinologist thinks is suppressing my appetite along with the chronic nausea.<br />
<br />
And now the next 4 days are going to be humid af, so I'm in an outrageous neuropathy flare, the likes I haven't had since 8 years ago.<br />
<br />
I am so scared. And with good reason. My weight is below the bottom of the BMI scale. I need to be on higher thyroid medication but my doctor doesn't want to suppress my appetite further. I am caught between Scylla and Charybdis.<br />
<br />
But I was able to catch something good amidst all that pain: one of the pinnacle scenes of my comic, where the heroine is rescued by her handmaiden, in a triumphant scene of metaphorical weight. It brings a balance to the story that it was missing before. And for that, I am grateful. For that I'll take the pain.<br />
<br />
I've got purpose now. There is meaning to this suffering. It's what I needed all along. Here is the baby the "birth pains" were missing. Here is the light at the end of the tunnel. Here is the Why that can make me withstand any How (thank you, <a href="https://en.wikipedia.org/wiki/Man%27s_Search_for_Meaning" target="_blank">Viktor Frankl</a>).<br />
<br />
So I'm not upset by the pain, awful though it is. I am worried about being allergic to a pain medication I have to keep taking for now. That's certainly not good. I'm gonna be laid up for the next 3 days with the rain forecast (and probably and extra day to dry everything out), and <b>that</b> is really effing things up.<br />
<br />
I was supposed to see the dentist today (canceled), I'm supposed to get blood-work done this week (that's not happening by any stretch of the imagination), I have a pain appointment tomorrow with an MD who doesn't prescribe (more like pain psych) that I <b>cannot</b> miss at <b><i>any </i></b>cost (I might even need to go fancy on the Uber ride for comfort's sake YIKES), and if it wasn't for the excessive pain and hypersensitivity.... ugh.<br />
<br />
But it's <b>not</b> so bad that I need the ER. There is at least THAT. I can surf this wave, no problem. This is only an 8, all told. I get brief moments of somewhat respite where it drops to a 7, and that's manageable. Not ignorable, but manageable. I'm not yelping out in pain at least.<br />
<br />
I'm on that razor's edge.<br />
<br />
But just watch how I can dance.</div>
<div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-85187539641421310552019-04-02T21:52:00.001-06:002019-04-02T21:52:57.201-06:00Anxiety? Ya think?<div dir="ltr" style="text-align: left;" trbidi="on">
So I saw this pain psychologist, and he ran me through a personality test. I scored high on anxiety. So he referred me to a biofeedback specialist, but apparently even if you have slight asthma, that can ruin biofeedback. 🙄 Another medical option stymied by some other diagnosis. What else is new?<br />
<br />
But then I saw this by @VoiceoverPete and it hit me: It's not that I'm anxious... It's that my anxiety is totally justified!<br />
<br />
Give a listen:<br />
<br />
<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/rCwSLEEF6dE?start=368" width="560"></iframe><br />
<br />
That bad thing frequently comes to pass, and sometimes catastrophically. The pain— interruptive pain— is guaranteed to show up, if not now, within 20 minutes of now, usually less than 10. It may be a stop & take medicine pain level or a stop everything pain level, but it's coming.<br />
<br />
And I fall super short of normal all the time. Several roommates over the years have expressed concern over the years. I was forbidden from hand washing dishes because I can't feel the dish to know it's clean and I can't see if they're clean because the same nerve damage ruined my eyes too. I have no confidence my "best" is good enough.<br />
<br />
Thus, is it any flipping wonder that I'm anxious? It's actually pretty astonishing how calm I am. But to be fair, it's boring now. Unexpected? Sure. There's no warning. But it's pain so familiar, so... Tuesday, that it's just not worth a fuss.<br />
<br />
The thing I hate the most is I'm such a waste of a human being like this. All this potential to give back but— crap. Hold on. It's medication time again...<br />
<br />
<br /></div>
<div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-5637332101967201282019-04-01T23:04:00.001-06:002019-04-01T23:04:40.459-06:00Why it’s been so difficult to post...<div dir="ltr" style="text-align: left;" trbidi="on">
I’m not in any shape to do what I set out to do here. I’m not in any shape to put a positive spin on chronic illness. I’m so overwhelmed, I feel immeasurably small.<br />
<br />
First off, I know I want to live. Let’s get that out of the way. I may pray for death, but that’s completely different. I’m not about to force death’s hand. It’s painful and always regrettable. Besides, I don’t want to leave five minutes before the miracle.<br />
<br />
And I may be a whiny bish right now, but damned if I’m not wore the hell out. I’m tired of being shut out of pain care just because my types of problems (both chronic pain AND chronic nausea) seem beyond their imagining. I’m tired of one ailment triggering another or making some treatment impossible or or or... I’m tired of being a complex problem. I may as well tattoo on my forehead: Here Comes Trouble.<br />
<br />
I don’t want to bring you guys down, but it’s been a struggle the past few years, and it’s not good right now. I need to gain weight but I have no appetite. I need to be on thyroid meds but can’t because that will suppress my appetite. In the meantime I have hypothyroid depression and a really crazy roommate who seems jealous of my disability (if she knew the pain I was always in, she wouldn’t be so quick to wish for this... #AblesAreWeird)<br />
<br />
I’m scared because I’m slowly wasting away and the ibuprofen I’m forced to take on the regular to keep the edge off the pain may be the culprit slowly starving me to death.<br />
<br />
They HAVE the means to treat me otherwise, but muh drug war. 🙄<br />
<br />
<br />
Send prayers, fellow pain warriors. I know you know they’re destroying us. Keep the faith. (And maybe flood the White House with letters sharing your struggle... <a href="https://www.whitehouse.gov/contact/">https://www.whitehouse.gov/contact/</a>)<br />
<br />
Much love.</div>
<div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com1tag:blogger.com,1999:blog-7902504831906503458.post-41815311327517223532019-02-21T15:57:00.001-07:002019-02-21T15:59:52.358-07:00Miracles! Biofeedback Heart Rate Coherence & the No Fiber Diet<div dir="ltr" style="text-align: left;" trbidi="on">Let's start with the disclaimer: <i>The Biofeedback Heart Rate Coherence has been recommended by my doctor, and he is monitoring my progress. The no fiber diet is something upon which I have embarked myself, from the suggestion of other patients.</i><br />
<br />
<h3>Biofeedback</h3>Let's be real. If you haven't seen the latest in #Biofeedback, you are missing out. I originally did biofeedback for relaxation & pain back in the '00 and I was not impressed. I could relax myself to amazing levels and it had no effect on my pain.<br />
<br />
However, now there's...<br />
<br />
<h3>Heart Rate Coherence</h3>This shiznit blows my mind. I was completely skeptical given my previous experience, but WOW! have there been advancements. There's a whole protocol for breathing to bring the heart and breath into synchronization. Yeah, it sounds like some hippy dippy stuff, but I'll be damned if it didn't work!<br />
<br />
Here's what happened: I'm using the (#nonspon) <a href="http://www.heartrateplus.com">www.heartrateplus.com</a> app (the pro version) for 20 minutes a day twice a day. I came back from my doctor's last night to do my first session at home. I was in terrible pain and was having so much difficult walking, I was bedridden. So I figured, now's a good time to try...<br />
<br />
After 20 minutes, not only was I in less pain, but I was in SO much less pain that I was able to get back on my feet immediately (impossible with just rest) and <b>stay</b> on my feet long enough to cook an actual meal! That's an absolute miracle, folks. YMMV, but I highly recommend this app for anyone dealing with chronic pain and pain flares.<br />
<br />
<h3>No Fiber Diet</h3>I've had long-running problems with my digestion, and like most of you, I've done everything under the sun as far as elimination diets and so forth. But it's gotten bad with me. The nausea and gut pain have been so terrible, that even with some medication helping (cannabis), I've slowly shrunk down to 120 lbs, <i>fifteen</i> pounds lighter than my skinniest weight when I was dying and a full 25 pounds lower than a healthy weight for my height. I am skin and bones, and I was required to add potassium supplements because my digestion was so bad. That is NOT normal for adrenal insufficiency AT ALL. Normally you should <i>avoid</i> potassium with my disease. But I wasn't able to eat enough to keep my levels up.<br />
<br />
Enter in Dr. Paul Mason, gut researcher in Australia: <a href="https://www.youtube.com/watch?v=xqUO4P9ADI0">Effect of Reducing Dietary Fiber</a><br />
<br />
<iframe width="560" height="315" src="https://www.youtube.com/embed/xqUO4P9ADI0" frameborder="0" allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe><br />
<br />
I knew that fruits and vegetables were difficult for me to digest and would make me sick (especially fruit), and had pretty much eliminated them from my diet. However, I've also always thought that meat was difficult for mer to digest, and had been avoiding that as well. I was living mainly on grains and dairy. Well... looks like the grain was a bad idea. <br />
<br />
So now I'm embarking on a No Fiber Diet, eliminating grains, nuts, seeds... Pretty much a carnivore diet, with dairy, sugar and spices allowed. Yes, this is a protocol I have made for myself, but based on research. I'm eating ground lamb, grass-fed ground beef, open-air-free-range eggs (eggs have historically been horrible for me, only to be eaten sparingly), young & cottage cheese (to avoid migraine triggers), nitrate-free bacon/salami, Greek yogurt, butter, milk, carbonated water, and my trademark Red Bull.<br />
<br />
I'm on day 4 and my discoveries have been this:<br />
<ol><li>I can digest meat! So far, so good. </li>
<li>Eggs, when thoroughly cooked, can be eaten daily!</li>
<li>My appetite is back!!!!</li>
</ol><br />
That last one is the biggest... I haven't felt hungry in years, despite the anti-nausea medication, and that is just amazing. My body feels like it wants to live again, and that... well... I'm not big praising something on scant initial results, but the results have been so beyond what I even though possible, I'm calling it now: these are miraculous improvements.<br />
<br />
Dare I have hope again? We shall see...<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-68401041007334229332018-10-20T19:35:00.002-06:002018-10-20T19:35:53.803-06:00"For Whom All Other Options Have Failed..."<div dir="ltr" style="text-align: left;" trbidi="on">Those are seven scary words: "for whom all other options have failed..." but those were the requirements for the Occipital Nerve Stimulator study. I've learned that study is a golden standard among pain doctors. <br />
<br />
<i>"Have you tried everything?"</i><br />
<br />
Yes, I've tried everything.<br />
<br />
<i>"Have you really tried everything?"</i><br />
<br />
I was in the Occipital Nerve Stimulator Study.<br />
<br />
<i>"Oh, crap. You really have tried everything. Sorry, there hasn't been anything new since Lyrica in 2008."<sup>*</sup></i><br />
<br />
That's where I am in pain management. Out beyond the horizon in "we have no idea what the eff to do" land, looking at blank faces that read "our hands are tied on what we <i>could</i> do by insane government regulation, I have a family to feed..."<br />
<br />
I'll overlook the fact the DEA is practicing medicine without a license if they would just let me <i>talk</i> to someone face-to-face. <br />
<br />
<b>I know a woman with Stage IV stomach cancer who can't get pain medication because of DEA regulation!</b> ARE YOU KIDDING ME?? All because of a little clause that says if you use marijuana, even medicinally (hello? STOMACH cancer???), you are excluded from ALL narcotics programs. Period.<br />
<br />
<br />
Um... Mr. Jeff Sessions, may I have a word?<br />
<br />
<br />
Forget me and my pain, Stage IV stomach cancer and you're forcing her to die in <b>agony</b>. What the in the ethical hell has this country become?? This is <b>Cruel & Unusual Punishment <i>by fiat</i></b>. We HAVE the drugs. They're completely AFFORDABLE. The SOLUTION is right there!!! But because of some moral panic over addiction, we're going to make this innocent, beautiful soul walk that path of pain...<br />
<br />
Her life doesn't have to be Hell. Mr. Sessions, how as a Christian can you allow that? Have you no mercy???<br />
<br />
God in Heaven, hear us.<br />
<br />
<br />
<br />
(<sup>*</sup> As of writing this, that's ten years ago. That's how slow drug development is.)<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-17945319031769695942018-09-29T07:25:00.000-06:002018-09-29T07:25:14.301-06:00Psychology School (Pain Psych)<div dir="ltr" style="text-align: left;" trbidi="on"><center><i>I'm just a soul whose intentions are good...<br />
Please Lord, don't let me be misunderstood..."</i><br />
<br />
<iframe width="560" height="315" src="https://www.youtube.com/embed/9ckv6-yhnIY" frameborder="0" allow="autoplay; encrypted-media" allowfullscreen></iframe></center><br />
So I reached out for some support services recently and made and enormous discovery: psychology does not understand chronic pain patients. Like... bad. Bad, bad.<br />
<br />
I mean, you've seen in past <a href="https://makethislookawesome.blogspot.com/2011/12/you-are-not-your-disease.html">me rant</a> about how awful some of the literature is and there are things I would DEFINITELY NOT <a href="https://makethislookawesome.blogspot.com/2014/08/the-dangers-of-positive-psychology.html">say</a> to anyone in our circumstance. But I had no comprehension of JUST how bad it was. I met a woman there who had similar troubles for her stomach cancer. They didn't know what to do with her either. Thank God I had organized my thoughts here years ago. We were able to counsel each other.<br />
<br />
So I need your prayers. I am attempting and have completed the first steps for a certificate in <b>pain psychology</b>. The need is just too great, and my ability to explain these experiences eloquently has always helped professionals. <br />
<br />
Well, now they need to take me seriously. Because people are dying over this stuff. I've seen it on the reddit boards. The Opioid Crisis has pushed so many people off their meds that the suicides are skyrocketing. <br />
<br />
It needs to stop.<br />
<br />
I'm volunteering to try and stop it. <br />
<br />
Wish me luck...<br />
<br />
<br />
<br />
<br />
<br />
p.s. Apologies for the extended absence and faulty restart. It's been a rough time and I needed to hermit rather than spread my behavior around publicly. I was just too angry. I was frustrated with the problem. NOW, I get it. THEY don't get it. They think they do and they are oh so wrong, and have been wrong since Elisabeth Kübler-Ross, bless her soul.<br />
<br />
I needed this experience to know what to do next. It's been a rough time, but I'm back. <br />
<br />
Thank you all for remaining.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com1tag:blogger.com,1999:blog-7902504831906503458.post-49473488793096142372018-07-09T22:10:00.000-06:002018-07-09T22:10:30.287-06:00No Knife Mostly Microwave Quick Quiche<div dir="ltr" style="text-align: left;" trbidi="on"><i>Requested by <a href="https://reddit.com/r/ChronicPain/" target="_blank">r/ChronicPain</a></I><br />
<br />
<b>Quiche</b> is an egg soufflé pie that can feature all sorts of ingredients: ham and cheddar, broccoli and cheddar, spinach and onion, Italian sausage and peppers... whatever your heart desires. It's also a dish that can be eaten warm or cold, and easily re-heats. This recipe uses the microwave for a majority of the cooking, and takes about 30 minutes to make, all told (meaning you don't have to be on your feet long). Steps can also be broken up with rest in-between without any harm to the dish, so long as you don't leave the pie crust in the oven! I've also included <i>Fancy</I> steps if you want to do a little extra work, but it's written with quick & easy in mind.<br />
<br />
<br />
<h2>Ingredients</h2><br />
1 pint heavy cream (can be whipping or light cream for less fat)<br />
4 eggs<br />
1c grated cheese (optional)<br />
1/2c pre-chopped frozen veggies (optional)<br />
1/3c meat or 4 strips of bacon (optional)<br />
1/2 tsp salt or no-salt substitute<br />
1 pie crust <br />
<i>{Fancy}</I> 1 pat butter<br />
Spices to top (your choice: black pepper/oregano/pepper flakes/paprika/etc.)<br />
<br />
<h2>Equipment</h2>Microwave-safe bowl capable of holding 4c liquid<br />
Microwave- & oven-safe pie pan<br />
Microwave-safe plate/bowl for bacon/meat<br />
Measuring cup<br />
Whisk or fork<br />
Bowls for ingredients<br />
<i>{Fancy}</I> Brush<br />
<br />
<h2>Directions</h2><br />
<h3>Preheat oven to 450 degrees Fahrenheit</h3><br />
<h3>Remove pie crust from aluminum pan</h3>For convenience sake, I go for the premade, frozen pie crusts. These usually come in aluminum tins, but can be removed easily but running warm water on the bottom of the pan then carefully patting the crust from the tin. The frozen crust will retain its shape and can then be placed into a microwave & oven safe pan.<br />
<br />
<h3>Pre-cook crust</h3>Once in the microwave & oven safe pan, you may choose to take the <i>{Fancy}</I> step of brushing the crust with butter. Otherwise skip to the next paragraph. Melt the pat of better in the microwave then brush outer crust with melted butter. Continue below.<br />
<br />
Place EMPTY pie crust in oven for 14-16 minutes, or until golden brown on the outer crust. <br />
<br />
<h3>Scald Cream</h3>In your microwave-safe bowl, add the pint of cream and place bowl and contents in microwave. Microwave for 4 minutes on high. If a skin has formed on the top of the cream (it should), stir. Then microwave for one additional minute until the cream starts to bubble. If a skin has not formed, microwave at one-minute intervals until skin/bubbles form.<br />
<br />
Set on counter to cool.<br />
<br />
<h3>Prepare Ingredients</h3><br />
Measure out the meat, cheese and/or veggies you're going to use. Once the pie crust is finished baking, these will be spread on the bottom of the crust. If the meat needs to be cooked or pre-cut frozen veggies need to be thawed, microwave according to its instructions using your microwave-safe plate/bowl. Cover with paper towels to reduce microwave mess.<br />
<br />
<i>{Fancy}</I> I sometimes cheat and use a knife here and cut block cheese into approximately 1/4-inch cubes. This will leave larger cheesy chunks in the quiche for a more authentic feel.<br />
<br />
Scramble eggs and add to cooled scalded cream. (If the cream is a little warm still, that's okay, so long as it's not hot enough to cook the eggs.)<br />
<br />
<h3>Fill Cooked Crust</h3><br />
Layer or mix (your preference) meat/cheese/veggies and place in the cooked pie crust. <br />
<br />
Slowly cover with egg & cream mixture until full. Be careful not to over-fill (the amount of egg-cram mic will vary depending on the amount of meat/cheese/veggies). <br />
<br />
Top with spices.<br />
<br />
<h3>Microwave</h3><br />
Carefully place contents in microwave and microwave on high for 9-11 minutes until contents are cooked. There should be no puddle (see pictures below) and the eggs should be bubbling and bounce to light touch.<br />
<br />
<b>Raw...</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDU8fsohf1t6R86SjdsmhDEBx3TVffzt1PXTN44ZLvvds9KsjsZ0zuss0bonM7k5zj9WaXrh-pUgn1huRGGs2PyNeYyh8364NXXLOK43bSYki9Sc8WOnFEQIZ50bBvcuBGhmRECdExeyF7/s1600/IMG_5756.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDU8fsohf1t6R86SjdsmhDEBx3TVffzt1PXTN44ZLvvds9KsjsZ0zuss0bonM7k5zj9WaXrh-pUgn1huRGGs2PyNeYyh8364NXXLOK43bSYki9Sc8WOnFEQIZ50bBvcuBGhmRECdExeyF7/s320/IMG_5756.JPG" width="320" height="240" data-original-width="1600" data-original-height="1200" /></a><br />
<br />
<b>Not yet...</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrc5BBgZ6jdL-4tpW3ogP8qBIX03c8fayV8KKbKjFIDnHqvmRu2mgOet63zDQuCfpTf73K0lP1CrDkKkPFJahuW1m54KCYmT8XdxgRWFy78aZgKj-MZdheQmgYhbGw5PWOD8Bt3yCsPTPb/s1600/IMG_5757.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrc5BBgZ6jdL-4tpW3ogP8qBIX03c8fayV8KKbKjFIDnHqvmRu2mgOet63zDQuCfpTf73K0lP1CrDkKkPFJahuW1m54KCYmT8XdxgRWFy78aZgKj-MZdheQmgYhbGw5PWOD8Bt3yCsPTPb/s320/IMG_5757.JPG" width="320" height="240" data-original-width="1600" data-original-height="1200" /></a><br />
<br />
<b>Almost...</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicymw18MtH1JRwQX-PB-chaA6plFMaCFPWKY8PLDfwpvfC9n1Bc_P4F4uUYL9kIBVpKPoSnqOrxwQ4v12KNBO4n9ZgGmrzXxJSewRHVc3SaUkuyYgQe1LgfO3zq3jGz1tQtVTDYrXYiJld/s1600/IMG_5758.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicymw18MtH1JRwQX-PB-chaA6plFMaCFPWKY8PLDfwpvfC9n1Bc_P4F4uUYL9kIBVpKPoSnqOrxwQ4v12KNBO4n9ZgGmrzXxJSewRHVc3SaUkuyYgQe1LgfO3zq3jGz1tQtVTDYrXYiJld/s320/IMG_5758.JPG" width="320" height="240" data-original-width="1600" data-original-height="1200" /></a><br />
<br />
<b>Done!</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQce3QYr5DbiTpmrZMoK2iqjaDmW_rN1UOoCTWzfg7qlDSpJQBtnlKiIfGhybyiHEcN7Mw-ag0FYlm7awET3uOpI68fbdIPUQCqdsVbnk6XWAhlRiNcx0BpJ7G_JowNKFakb_ue-6Stbg9/s1600/IMG_5759.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQce3QYr5DbiTpmrZMoK2iqjaDmW_rN1UOoCTWzfg7qlDSpJQBtnlKiIfGhybyiHEcN7Mw-ag0FYlm7awET3uOpI68fbdIPUQCqdsVbnk6XWAhlRiNcx0BpJ7G_JowNKFakb_ue-6Stbg9/s320/IMG_5759.JPG" width="320" height="240" data-original-width="1600" data-original-height="1200" /></a><br />
<br />
<h3>Let sit to cool & Enjoy!</h3><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXQPeRlj3qeDPevsxmcIEEjFWYuigz2hC8j2XfvYtfgqO0xdw0ZcngESX3UIY4DKdDhYQwgdTbX3mzW8YndLGN6VlTlD24EMkTBW6xrpgeqBInFFj48AWWWdtMFEAFPB3NhI0a6tM2G5Oo/s1600/IMG_5761.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXQPeRlj3qeDPevsxmcIEEjFWYuigz2hC8j2XfvYtfgqO0xdw0ZcngESX3UIY4DKdDhYQwgdTbX3mzW8YndLGN6VlTlD24EMkTBW6xrpgeqBInFFj48AWWWdtMFEAFPB3NhI0a6tM2G5Oo/s320/IMG_5761.JPG" width="240" height="320" data-original-width="1200" data-original-height="1600" /></a><br />
<br />
<b>Crust is flakey!</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPaVPV7vEJ6Lu2ifvLWhvjE8CSEdJJiUUWHuNs-pbRl4NiV9wsXdP96zTsPQq9v50Y09clKQXnwqVh3YS_evSwBcAcwhcOuw6Tq7iL1Rj1Emsf6LxOue8ESO9RDw4QigYq6AMaoheCev_D/s1600/IMG_5762.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPaVPV7vEJ6Lu2ifvLWhvjE8CSEdJJiUUWHuNs-pbRl4NiV9wsXdP96zTsPQq9v50Y09clKQXnwqVh3YS_evSwBcAcwhcOuw6Tq7iL1Rj1Emsf6LxOue8ESO9RDw4QigYq6AMaoheCev_D/s320/IMG_5762.JPG" width="320" height="240" data-original-width="1600" data-original-height="1200" /></a><br />
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</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-15297739741180180922016-06-25T19:21:00.001-06:002016-06-28T13:58:50.379-06:00FREE PDF Chin Up! 50 Ways to Make Money While Disabled SCAM<div dir="ltr" style="text-align: left;" trbidi="on">PSA If you find a link to a FREE DOWNLOAD PDF version of my ebook <a href="https://www.amazon.com/Chin-Ways-Money-While-Disabled-ebook/dp/B00UGTCXO6/" target="_blank">Chin Up! 50 Ways to Make Money While Disabled</a> DO NOT give them any credit card information, EVEN IF they say you will not be charged. There have been several complaints against their over 100 websites and businesses, which also include online games, movies & other clickbait.<br />
<br />
It HORRIFIES me to think that anyone is using my ebook to scam people, even more because of who my target audience is! I've tried to make my ebook as inexpensive as possible (most ebooks on disability law start at ten times the asking price), provide it free to folks already enrolled in Kindle Unlimited, allow folks to share the ebook in whole or in part. I don't want anyone to think they have to go through some blackmarket website to get the information they need. Therefore I am running a <a href="https://www.amazon.com/Chin-Ways-Money-While-Disabled-ebook/dp/B00UGTCXO6/">FREE EBOOK PROMOTION JULY 4, 2016!!</a><br />
<br />
I'm allowed to do this five times through Amazon. This is the first of five, so if you don't catch this one in time, don't worry! There will be another soon. to get your free gcopy, just go to Amazon.com on July 4th and download. Simple! <br />
<br />
Spread the word: DO NOT buy the PDF version, it is total clickbait! (As a rule, if they say it's free, but they require a credit card, it's not free.) <br />
<br />
Feel free to comment here if you have the ebook and are willing to loan it out to others. <br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-51245724237274580632016-03-17T21:50:00.000-06:002016-03-17T21:50:06.273-06:00My Peace<div dir="ltr" style="text-align: left;" trbidi="on">Peace is often the first thing to go with a chronic pain condition. Your body is not at peace. Your mind is not at peace. Even sleep refuses to be a safe haven. So when you do find the right combination of medications that puts the symptoms to bed, the peace that follows can be such a foreign feeling that its stillness roars. <br />
<br />
My doctors and I have found that sweet spot, we know exactly where it lives, with a new added bonus: I require even less medication to acheive the same degree of control. The miracle required for improvement turned out to be very simple (and please don't laugh, I know some of you have been saying this for years): I quit smoking. Now I break out in hives if I try to take even one puff. What I didn't realize is how much of a toll fighting off that allergy was having on the rest of me! Now my pain is less, my energy is higher, I'm off the oxygen even at elevation and I'm feeling like a new woman.<br />
<br />
This.<br />
<br />
This is why I hang on with all my might. This is why I try to be grace under pressure. This is why I try new things and take the risk to travel despite it all. Because only once will it get so awful that there's no coming back. Every time before then is just another trial to go through to reach peace and happiness on the other side. Until it's the last time, time will always change things. It may not change the things I want changed with the promptness in which I want them changed, but that's just my impatience. If I am able to wait long enough, something new will come along for me. And it really helps to keep a good sense of humor in the meantime.<br />
<br />
This is why I was so frustrated— because this peace was just outside of reach for so long! We knew the answer. We could see it right in front of us. But a giant chasm of beurocracy had opened up and we just couldn't get there from here at the time. And now that the chasm has be crossed and I've arived, all that frustration and stress is melting from my shoulders. I am in control of my pain, it does not control me. I have the tools I need to tame the beast. I'll never have to doubt my ability to do something. I know I can do it. No longer do I have to cautiously think about each move. Now I can move without thinking, which allows me to concentrate on better things.<br />
<br />
The relief from no longer having to worry from moment to moment, "Am I okay? Am I going to be okay?" allows everything else. "Yes, I'm okay, what do you need?" That statement is the difference between an employee and a consumer. Put me on the production side, always. I will be a contributing member of society, with joy. The only thing I might complain about is my commute. Everything is manageable. <br />
<br />
Peace of body, peace of mind, peace of life. <br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-74423081824234513172016-02-09T14:50:00.001-07:002016-03-16T12:51:57.405-06:00New Year - New Goals<div dir="ltr" style="text-align: left;" trbidi="on">Apologies for my absence. Life got very real. Things are finally going to be set straight.<br />
<br />
I used to have a rule: Never live south of the Mason-Dixon line. And if you know your American History, you know that St. Louis is below that line. Now, I have much love for The Lou and many a fond memory here. But in many ways this place is NOT good for me. Allergies for one. Weather for two. I need a dry climate. I can handle my nerves when it's cold and dry. Mongolia would be perfect for me. St. Louis is hot, humid, and wet. Half this place is reclaimed swampland. Pam + St. Louis = bad.<br />
<br />
Add to that the research I compiled while I took my online vacation: it is damn near impossible to get legal pain prescriptions in Missouri. I have talked to multiple patients, I have made my own attempts only to be told the pain clinic makes no prescriptions.... I cannot find treatment here. My father's clients find any drug they need on the streets. They get hundreds of milligrams of methadone a day from the drug programs (often sold at $20 for 75mg). But if you have a legitimate pain problem, you're screwed.<br />
<br />
So it's back to the land of sanity, and it's time to make a few changes. <br />
1. I must quit smoking. The nicotine helps the migraines but my lungs are shot. If I'm going to live at 6,000ft, I need as much oxygen as I can get.<br />
2. I must get better at posting here. The hiatus was necessary. I needed a walkabout. But it's time to come home.<br />
3. I need to rent a house. Apartment/condo living is NOT for me. I need my sanctuary in which I can heal when I hurt.<br />
4. Work. This SSDI is not cutting it. Not in this economy.<br />
5. Publish the paperback. It's time.<br />
6. Find my people. <br />
<br />
Long term:<br />
7. Financial stability (difficult with a chronic illness, but not impossible with work income)<br />
8. Adopt<br />
<br />
I became lost after the "But You Don't Look Sick" messages boards were taken down. It was like someone had come in and burned my village. I don't know where my tribe is anymore. We scattered to the wind and I can see no other villages in the distance. I need to be with my people again. Their support was amazing and got me through so much. I miss it terribly.<br />
<br />
I need to shoot for the dream I've had since I was a little girl: I need to adopt. I need to be a foster parent. That's a piece of me I've left unfulfilled for too long. My body can't make children, not without a lot of expensive help. But that doesn't mean I can't be a mom. I will be a mom.<br />
<br />
It's time. Happy Year of the Monkey!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-43999858698628402742015-11-29T06:20:00.000-07:002015-11-29T06:20:03.733-07:00My War<div dir="ltr" style="text-align: left;" trbidi="on">I have been wrestling my Shadow, and I lose frequently. My pain is a monster. You cannot see it. I wish you could. It has teeth that chew on my head, claws that dig into my hands and feet, and a tail that lashes my body. I look and frequently can behave like there is no battle going on. I am a veteran of this war. But sometimes I am overwhelmed. The monster has me beat. And I try to do my beat to get by, but I know I am vulnerable. I know the pain is crippling me and I'm just trying to get home. <br />
<br />
Now if someone reproaches me while I'm losing to a monster, I can become a monster myself. Flight isn't possible, so fight kicks in. My Shadow can take over at this point. My will is so weak from the struggle, my normal, rational self slips. I don't like it. I don't want what's going to happen next to happen. But it happens anyway: I get lippy. I get loud. I curse like the sailor my parents raised me to be (nod to the U.S. Navy). I fight back. Because I have not survived this long by rolling over and giving up.<br />
<br />
I've lost count of how many times I: "should have been in a coma," "should not have been able to be up and walking around," "should have been dead." I am a warrior. And this war does not end. This is not Post Traumatic Stress Disorder. This is Current Trauma Stress Disorder. Don't be fooled by my smile. When I'm not smiling, please give me space. Otherwise I will snap at you, and it's not pretty.<br />
<br />
You do not know the battles I have had to fight to get what should have rightfully been mine from the beginning. Not business battles, though I've have my fair share of economic strife. Not traffic battles that people needlessly wage on the roads each day (never thinking a car is a deadly weapon, by the way). Not career battles, though I myself still long to be in that fight. I battle with my pain. I battle my nerves that fire of random sensations at random moments. I battle chronic nausea, gastropharesis, and random choking for no reason. I battle migraines that would end you, as they ended my full-time career. This war never stops.<br />
<br />
Some days are better than others. Even the beast sleeps sometimes. But I have to take a martini-glass-full of medications each day to get even the tiniest respite. On a scale of 1 to 10, I don't count any pain below a 5. If it's only 5, it's time to take care of all the chores I've been neglecting and run errands while I can. But I have to be very careful not to wake the beast, so I cannot do too much. These days come maybe 2-3 times per month right now. With more medication, I may be able to get it up to 4, or (Heavens, please!) 5 times per week. But that's another battle I'm fighting.<br />
<br />
I don't get to live life like most people. My invisible monster makes it difficult to explain my situation to others. I make chronic pain look awesome. And why shouldnt I take advantage of the luck I have left? Yeah, there's a downside: people don't believe I'm as sick as I say. But what's my other option? Sitting in a wheelchair when I can very well walk myself? That's lying and manipulation. I don't brook with that. I will not beg for sympathy when I don't need it. And when I do, it's only because I'm in crisis.<br />
<br />
That's why it's not PTSD for me, it's CTSD. This is real. This is now. I'm more amazing than you know.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-72060306455539716612015-11-21T08:09:00.000-07:002015-11-22T11:38:40.158-07:00Political Rant: Fear Mongering<div dir="ltr" style="text-align: left;" trbidi="on">I have to speak up. The fear mongering in this country is out of control. The Paris Attacks didn't even happen on our soil, and yet we are talking about slamming the door on people in need out of fear of what <i>might</i> happen. We are ignoring the plight of people fleeing brutality and war in an attempt to firewall ourselves off from terrorisism, when we the terrorism in this case was HOMEGROWN. Have we forgotten Waco, Texas that quickily? Or what about Sandyhook, Connecticut? This is the same stupid fearmongering that has us more worried about the ONE addict, when ther are <b>over 100 people</b> suffering in chronic pain PER ADDICT. The unsubstantiated boogyman under our bed frightens us more than the very REAL problem of suffering we see every day. We do nothing sensible about the real problems, and we lose our head over spooky possibilities. And it's destroying this country.<br />
<br />
Most people get behind the wheel of a car every day, multiple times a day, never thinking that we are operating a deadly weapon. We require no background checks for these weapons, no psychological exams. We advertize their sale on TV. Nobody thinks twice about it. Yet a car can kill you just as dead as a gun. We tell people who are bullied to speak out, never thinking, "Hey... What happens when there's no grown-up around?" As someone who <i>was</i> bullied as a child, I'll tell you what happens: you get it twice as bad after you've informed a teacher than if you kept your mouth shut. And the bullies at school weren't <i>nearly</i> as bad as the bullies I had to face in my own family every summer break. School was a vacation from violence for me.<br />
<br />
Now I'm living in a country I don't recognize. I read about this type of country in school, and the book was <u>1984</u>. Big Brother is alive and well in Trapwire, in the local traffic and people cameras, and even in the fat-shaming on the TV, even though any look at the numbers will tell us there are more unhealthy skinny people than there are unhealthy fat people (thank you, Science Friday on NPR). We are punishing people for stupid reasons, all to attain some dreamlike society where no one does any wrong, ever. AND IT'S JUST NOT POSSIBLE.<br />
<br />
Our politicians and police keep saying, "We need more power to keep you safe!" Can you keep me safe from my own body? Can you keep me safe from the arrogance of a respected surgeon who let me wake up on the operating table and infected me with MRSA? Because those are the things that have nearly killed me. Can you keep my uncle safe from the cholesterol drug that paralyzed him? I still see the ads for it on TV...<br />
<br />
LIFE IS DANGEROUS! We all die of something. And we are letting our fears <b>cripple</b> our lives. This must stop. But as a good scholar of history I know that we will make stupid decisions like locking up Japanese-Americans just because we know who they are and ignoring all the German-Americans because they're white and European looking. We wanted to shut out German-Jews because we feared the saboteurs that <i>might</i> try and sneek in amongst their ranks! How many more died in the Holocaust over our fears?<br />
<br />
There is a new holocaust going on. The Kurds have already found the mass graves full of women and children. Yet we'd rather believe the monsters are made over there than admit that they live amongst us right now. We'd rather let hundreds of millions of pain patients suffer and live in torture then deal with the minascule few who use drugs to escape from emotional pain, despite the fact that 50% grow out of their addiction <i>with no intervention whatsoever,</i>, according to the DEA. <br />
<br />
Politicians talk big, saying they will keep us safe. But when have you actually seen a mass-murderer stopped before a shot was fired or a bomb exploded? NEVER. We were only able to pacify the Germans and Japanese through occupying those countries for FIFTY YEARS. It takes a generation or two to change people's warmongering ways, but we've lost the stomach for that, wanting quick solutions and fast results. We focus on the small problems like terrorism forgetting that two hurricanes (Katrina and Sandy) did more damage and cost more in economics, and human lives lost and disrupted, than their suicide bombings could ever do. <br />
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We are insane in this country. It needs to stop. Reasonable voices and facts are being drowned out by fear and hate. We ignore pain and suffering, then pat ourselves on the back for a job well done. It shames me that we speak of freedom and liberty. We are such liars. This is not the United States of America I was taught about in school. I don't know where She is. We need to return to Her, and I don't know how. <br />
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Together, we might be able to. But it's going to take courage-- courage that I don't know we have-- to start doing right again. God(s) help us. <br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-68275682374498121002015-11-16T09:17:00.001-07:002015-11-16T09:17:26.270-07:00Applying for Social Security #Disability<div dir="ltr" style="text-align: left;" trbidi="on">I have been doing Social Security cases since I applied for Social Security myself 14 years ago at the tender age of 29. For the first 12 years, my success rare was 100%, and no one ever needed to go to trial. Times have changed since then.<br />
<br />
I tweeted last year that the Disability fund was going to go bankrupt in 2016. Thankfully, Congress fixed that, but at the expense of our debt. There's no other way right now. As a side-effect, however, there's still terrible news. People who used to be considered disabled (quadriplegics, for example) are being denied disability and thrown off the disability rolls. I have 3 clients right now for whom that is the case.<br />
<br />
It’s a terrifying time to be disabled in this country. That’s why I wrote my book, <a hfre="
http://www.amazon.com/Chin-Ways-Money-While-Disabled-ebook/dp/B00UGTCXO6/ref=sr_1_1?s=books&ie=UTF8&qid=1447687651&sr=1-1&keywords=Pamela+Curtis" target="blank">Chin Up! 50 Ways to Make Money While Disabled</a>. People don’t understand that thigs like the ABLE act is only if you were disabled as a child. Even though I was disabled so young they consider me retired, labels are a big deal to government programs. I thank my lucky stars ever day for my writing career prior to when I got sick. As Ben Carson and Hillary Clinton are learning, words are slippery and the pen is mightier than the sword. (Which, by extension means Twitter and Facebook are more powerful than the TV news).<br />
<br />
The point is, no one gets rich on government cheeze. Oh, they’ll tell you about fraud cases and widely publicize it, but I can guarantee I make less than 25% of what I could make if I were able to work full time. When I can’t work, I’m poor. When I can, I’m okay. Kicking me off SSDI isn’t necessary to motivate me. I still work today, though only part time. My disease is a full-time job that no one would want. But damned if I can’t quit being disabled like I can quit a job.<br />
<br />
Obama exploded the disability rolls from 9 million to over 15 million at the peak. And people wonder why people in wheelchairs are being thrown off and no one can get on disability. We’re broke folls! The gravy train is over, and real, legitimate cases are being thrown out with the bathwater (pardon for mixing my metaphors). A lawyer I know in Phoenix won’t even take a disability case if the applicant is under 50 years old.<br />
<br />
Times are hard, and they get hardest for people at the fringes first. Here’s how to prepare for your SSDI/SSI application:<br />
<br />
1. If you can apply online, <a href="http://ssa.gov">ssa.gov</a> has an easy application process. If you need to apply on paper, you can call and ask for the forms to be mailed to you, or you can pick some up at your local Social Security office.<br />
2. Gather all your medical information, make xerox copies. ALWAYS KEEP YOUR ORIGINALS. You can send/take in your paperwork with your application. <b>This can help you to avoid an appeal.</b><br />
3. If you need assistance with the initial application, many disability advocates can do this for FREE. You can never be charged money for your initial application, otherwise it can be considered <b>government fraud</b>.<br />
4. If you do have to appeal, you don’t need a lawyer to file (this is what I do for my day job). Lawyers are only required if the appeal goes to court. You CAN be charged money at this stage, but it won’t come out of your pocket. The Social Security Administration pays for you.<br />
5. If you require a lawyer, a lawyer from ANY STATE will do, since Social Security Disability is a federal program. (This is not true for <b>state disability</b>.)<br />
6. You can appeal as many times as you want. You can also go to court as many times as you want, as long as there are new circumstances (you got worse, you got something new, etc.)<br />
<br />
If this is too overwhelming for any reason, find a Social Worker in your area. They can help guide you through the process. DO NOT trust what the workers at Social Security Offices say. Many times they aren’t current on the laws. They’re bureaucrats after all.<br />
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<b>What You Can Expect Once Approved</b><br />
<i>If you were disabled before 18 years old</i><br />
<br />
You are in a <b>special category</b>.<br />
<br />
You will be placed on SSDI and SSI because you havent been able to pay into the Social Security Trust fund, not being old enough to work full time, since it's expected you did school full time (if you could attend school, that is). You will have access to benifits stipulated in the ABLE Act (for more information, check out this list of <a href="https://www.autismspeaks.org/news/news-item/10-things-know-about-able-act">10 Things to Know About ABLE Act</a>). <br />
<br />
Your first check will be dated according to when the federal government considers you "Officially" Disabled, minus five months. If there was a delay from when you were first disabled to when you were approved (sometimes the process can take years to be approved) you will receive a <b>large sum payment</b>. It is every monthly payment you would have received if you had been recognized as disabled when you actually were disabled (minus five months). <br />
<br />
Approval for <b>Medicare</b> benefits runs on a different clock. <i>More on Medicare to come in a later post.</i><br />
<br />
<i>If you are approved between the ages of 18 and 29</i><br />
<br />
Again, you are in a <b>special category</b>.<br />
<br />
You may have worked as an adult at this point, but if disabled at this age, you haven't had enough time to pay into your Social Security Trust Fund. As a result, there is a special formula the Social Security Administration used to calculate your SSDI payment, based on your income for the last year you were employed. You will receive a larger SSDI check as a result, and you may not qualify for SSI as a result. <br />
<br />
The rules for your first check are the same as above. <br />
<br />
<i>If you are approved between the ages of 30 and 61 (or there abouts)</i><br />
<br />
You will receive SSDI based on what you have paid into your Social Security Trust Fund. If that amount is too small (i.e., you're WAY below the poverty line), you will also qualify for SSI.<br />
<br />
Your first check follows the same rules as in the first section.<br />
<br />
<i>If you are approved at the age of 62 and up</i><br />
<br />
Because you are the age of retirement, you will be pushed into retirement and may not revieve approval for SSDI. <b>If this happens, APPEAL!</B> You can receive both your Social Security retirement check and a disability check if you can show your disability is severe enough. This is because most retirees are healthy for a while before old age itself becomes crippling.<br />
<br />
Your first check(s) will still follow the rules as mentioned in the first section.<br />
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Feel free to ask me any questions. You can reach me through Twitter at @MakeThisLookAwe or @DsabldMnyMakrs<br />
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</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com1tag:blogger.com,1999:blog-7902504831906503458.post-52454827375944774542015-11-09T14:56:00.000-07:002015-11-09T14:56:00.559-07:00Life is a Double-Edged Sword<div dir="ltr" style="text-align: left;" trbidi="on">Now that I'm the age equivalent of the answer to "life, the Universe, and everything," I'm hoping to grow in wisdom. For my birthday, I "celebrated" with a double dose of ER visits. It wasn't my best birthday, but then I've had worse too. I've been on this earth long enough to have a number of educated complaints, but I can also have a sense of humor about it too. That's the way it is with law, which a lot of people don't realize. Words are a double-edged sword. They can cut, and they can heal. Medicine is a double-edged sword: it can hurt or or can harm. Information too: your data can be used to redeem you, and it can be used to bury you. It just depends on which side of the sword you're on: the cutting edge, or the flat of the blade.<br />
<br />
Stories are like that. Who you're cheering for really agrees to the side with whom you most identify. We all can skip over the bits we don't like, or are too boring for us, and find the plot which interests us. It's a field of study called semiotics, a part of language that acts as signs and symbols we can all follow like a roadmap. But the direction they take us is not necessarily where we think we're going.<br />
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I had a great exchange with the doctors yesterday. I know I can get combative with doctora. It's not something I do on purpose. Hurt, confusion and fear easily lead to anger. They can also lead to submission. It just depends on what sogns we see in other people's language as to which road we end up on. I had a moment when I didn't understand what the doctor was telling me. I had a feeling she was not as well informed about endocrine issues like I had. Whether or not I was right really doesn't matter. She was seeing a pattern that I couldn't see, and in it there was something that worried her. She was able to explain it to me, and suddenly, I relaxed. Yeah, it meant getting a spinal tap on my birthday, but at least I was in the clear for meningitis!<br />
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On my way out I ran into a man who had been thrown out by the doctors from the hospital (contrary to popular belief, they can throw you out or keep you as long as possible at an ER, the only recourse is medical malpractice, if you live, can afford the attornies, and win your case). He was hostile, and the people there didn't understand his difficulties were not because he was messed up or drug seeking, he was still recovering from a stroke. But piss the staff off or anyone else, and they'll throw you out as equally skillfully as they will treat you. <br />
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So yeah, they doctor hit a nerve in my spine, but it wasn't as bad as the first spinal tap I had where the poor student really jabbed me, and the doctors didn't bother to tell me to take it easy afterwards. Apparently I have tough skin, too, probably a side effect from my Sjogren's, but at this point who can say if it isn't from the nerve damage in my skin too? Sometimes my Sjogren's is in remission and I sweat like normal. Other times I don't and save money on underarm products.<br />
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It's the same way with medication. It can heal, cause harm, or get you high. Truthfully, the drug doesn't care which it is. Crestor can save lives, or it can cause paralysis. Marijuana can get you high, hungry, and horney, ot it can take away pain, instill joy, boost proper immune and endocrine response, and heal PTSD. It can make you forget, or it can help you remember. Any medicine can do that. Any medical prodecude can do that. Is having a permanent condition bad? Sure. But not so bad if you consider the alternative was dying.<br />
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In Iceland there's a saying: it's not the drugs who make the addict, it's the need to escape. What's the difference beetween a food addiction and drug addiction? You can't quit eating food. But then it's just as dangerous to avoid all drugs. Christian Scientists have a huge problem with early mortality for that reason. Heck, you can get a prescription for oxygen, and that stuff is free in the air! Oxygen is a drug that causes euphoria. But you don't want to quit breathing just like you don't want to quit eating, just like drugs can be helpful, harmful, and fun all at the same time. Life is a double-edged sword that way.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-51929848636949933712015-10-18T17:23:00.001-06:002015-10-18T17:23:20.310-06:00My Wish for Doctors<div dir="ltr" style="text-align: left;" trbidi="on">If I had to give one sentence to a doctor about who I am it would be: "I'm going to work anyway so you may as well help me get paid for it." That is my purpose in searching for healthcare. I just don't understand people who say, "It must be nice to to have to work." You know, forget that chronic pain is awful, forget how frustrated I get with my body throwing wrenches into my plans. I am a writer, and this blog is proof I'm going to do what gives me the most fulfillment no matter how much I'm tortured. Since my contributions can still help others, then doesn't it make sense to give me the tools so I can?<br />
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The Internet is a godsend to someone like me. Not only can I get research from around the world, translated by others into my native language and vice versa is the greatest revolution of all time. It used to take centuries to send an idea around the world, now it takes as long as your download speed. In this kind of world, I want to use my powers for good. I don't want to dull my falculties or my ability to think, that's how I make my money! I can't be blotto and get things done. My job requires that I am able to learn complex complicated computer processes and then explain them to others so they can get their work done. It's called technical writing and I love it. <br />
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On my job, I get to work with really smart people, people far smarter than me. They're doing the cutting edge work, and I get to learn about it from them, in person. I get to ask them all sorts of stupid questions, while not lookind stupid doing it, because if I have questions, the reader will have questions. It's the equivalent of getting the exclusive first interview with the creator of the latest whiz-bang technology. I get to be the first fan, the alpha follower, the ultimate technology hipster.<br />
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Then I get to take their brilliance and translate it within English to audiences of all kinds. It's an amazing stage on which I get to perform. Yeah, the audience isn't vast, but that's not the point. I don't need to be famous. There are a whole lot of other, more brilliant minds who deserve it much more than me. I stand on the shoulders of giants. It gives me a great view.<br />
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This probably explains why I can write fiction very well. I'd much rather explain and inform than entertain. A story is a puff of smoke. Technical writing is explaining how the magic is made. The second is much more useful. You can build a house on truth. You can't walk on smoke. Fun is fun, but I can make my own fun easily, regardless of my pain level. In fact, sometimes the greater my pain, the more amazing my sense of humor. Sometimes things get so absurdly serious, they become seriously absurd. You laugh or else.<br />
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Cops make lousy doctors and doctors make lousy cops. Ask amy employee at the dispensaries in Colorado and they'll tell you it was easy to tell the real medical patients from the ones who just wanted to get high. For one thing, sick people go through tons more medication becuase they're fighting an uphill battle. One dispensary I used to frequent even changed their prices on a perticular strain, because they noticed only their medical patients bought it (back before recreational pot was legalized there). It went to top shelf prices to discounted below bottom shelf. I used to take concentrated pills of the strain, and it was amazing for body pain. It's high in CBDs and is recognized as such a good medicine, even Missouri has legalized it.<br />
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I wish doctors had the same freedom to say, "Okay, so your an addict... That's normal for 1.3% of the population. We know that it's a medical and psychological problem. There's no need to be ashamed, here's how we can help you recover." And then people with real pain problems can go, "Doc, I hurt!" And the doctor can know to take it as a serious medical clue, rather than a trait to be doubted <br />
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Wouldn't that make this a better world for everyone? <br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-10452804502204105402015-10-17T17:28:00.000-06:002015-10-17T17:28:19.972-06:00Verifiable Neuropathy Symptom<div dir="ltr" style="text-align: left;" trbidi="on">Quick update: #goodnews! Thanks to a very observant medical student in the ER this morning, I <b>finally</b> have the doctors takig my small fiber neuropathy serieously. This student discovered I have a rare, easily-observed symptom, and one that NO ONE can fake! Even though my main complaint of my nerve damage in a stocking-and-glove pattern, we've long known the nerve damage is throughout my body. One effect is I have vision problems that cannnot be corrected with glasses or surgery. What we <i>didn't</i> know is that you can sometimes see my pupils flutter rapidly when you shine a light in them. It's a symptom that is impossible to fake, cannot be induced with drugs, and is a clear sign of nerve damage. As a result, not only did I get pain relief in the ER, they also put me on a fast-track referral! (I'll have an appointment this Monday or Tuesday.) Merciful heavens, they also gave me medication to be out of pain until then.<br />
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Thank you everyone for your prayers and well-wishes! They were answered!!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-51340803801145831892015-10-16T10:36:00.000-06:002015-10-18T17:13:06.830-06:00Bravery & Folly<div dir="ltr" style="text-align: left;" trbidi="on">I am sometimes way too brave for my own good. I will dare to do what other people won't to shake up people's preconceptions. It's not that I don't understand that what I'm doing can get me burned. It's not that I don't hurt when I burn. It's not that I haven't considered both sides. In fact, I go so far as to collect information from multiple sources. It's the old joke: take two people and there are three stories: his, hers, and the truth. My way of thinking isn't necessarily truth because it's all built on the foundation of what I think I know, what I've been taught, what I believe, and what I've had the fortune or misfortune to experience. None of that means I'm right. But if I can explain and give overwhelming evidence other people might agree. Prove it through experimentation, and other people will build an industry out of it.<br />
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I wish I had th money to establish an open anonymous forum for patients. Doctors would be allowed to read but not to comment. There used to be amazing forums at <a href="http://butyoudontlooksick.com">butyoudontlooksick.com</a> but they've been gone for a while. If such a message forum existed with a viral hit like The Spoon Theory that made people gravitate to the site, I think doctors would be pretty surprised. Oh sure, there would be a lot of mistakes, but that's not what's important. What's important to see is how easily people can compare stories to see if their stories match. Do that publically, and other people whose stories kinda match can compare notes, ask questions, and find out head in this direction or head in that. Someone who is actually experiencing the same thing can suss out whose stories match and whose don't. The marketplace of ideas separates truth from fiction, and lies from reality.<br />
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When you're a hammer, everything starts to look like a nail. And the hammer doesn't like being confronted with screws. This is why multiple tools are needed. It's easy to be a screw and have your purpose and surroundings destroyed because a hammer came along and pounded you into the wood. This is exactly what happens in a misdiagnosis, whether it's the patient or the doctor who has made it. it's called patternicity: the ability to see patterns in what appears to be noise. Sometimes there is a pattern there, and we've got it right. Other times there are multiple patterns depending on your perspective. Still other times the pattern creates an illusion. And sometimes it's completely random. Schitzophrenics have an overdeveloped sense of patternicity. When they're in reality, they make amazing mathemiticians and economists. When their brain has gone overboard, they can be a menice to society and themselves. <br />
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We all have this potential for glory and madness, depending on the function of our brains, our environment, and what results as an interplay between the two. When it works, it can be an amazing feat of genius. When it doesn't, it's just as radical, only in another direction.<br />
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Bravery can be folly and vice versa. It really depends on how we judge the outcome. we can never take bad luck too seriously, because there's no telling that it won't work on the hundreth time. On the same hand, good luck has the same vulnerability. Skill and luck are sometimes indistinugishable. We often don't know ourselves which is which. There's a lot of work that has to happen to find out sometimes. <br />
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This blog post was inspired by the comments people have left here, so please share your ideas! Even absurd ones. The only thing I will block is spam and personal attacks. Attack an idea, sure, or even a stereotype. You can even be angry, the world knows I get angry. Just please don't verbally shoot one another!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-47813114941546367672015-10-09T11:17:00.000-06:002015-10-09T11:17:00.103-06:00Legalization vs. Regulation<div dir="ltr" style="text-align: left;" trbidi="on">Ending Prohibition of Drugs does not mean heroin is going to be sold over the counter. Yet most people think that's what's going to happen if we end prohibition. Think about it. We ended the prohibition on alcohol, but that doesn't mean a young kid can walk into a bar an buy a beer. Many states have legalized marijuana but that doesn't mean it's available in your grocery store. And grocery stores have been carrying a more lethal drug than heroine for decades: acetaminophen, known under the brand name Ty----l. If you OD on this drug, you die horribly as your liver dies over the next three days. It's a brutal way to go, and it's responsible for more deaths every year than heroin.<br />
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Legalizarion does not mean unregulated. We regulate all drugs and we use all drugs in science and medicine already. We do this through the scheduling of drugs. We could easily reduce the classes from five to two prescription-ready class and less for non-lethal drugs like marijuana and marijuana concentrates. Yes, you can OD on marijuana, but the worst thing that happens is a seizure (also known as "falling out"), the OD itself does not cause death. Our endocrine systems require cannabinoid chemicals to function. This part of the endocrine system is called the endocannabinoid system as a result. <br />
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Peter Crist wisely said: "You can recover from an addicion. You cannot recover from a conviction. And admitting you're an addict means you're admitting to being a felon." so true. The only addition I could make is thank the stars for Alchoholics Anonymous and Narcotics Anonymous, and bless the alcoholics/addicts they serve. We woke up from the prohibition on alcohol in 13 years. We've had this crazy "War on Drugs"for 44. The lifting of the prohibition of marijuana is a good start. <br />
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The DEA could remain, and simply refocus its efforts: away from prohibition and move to regulation. We have a federal bureau for Alcohol, Tobacco, and Firearms. The FDA could move its doctors to the DEA and focus on Food and Over-The-Counter medication (and imagine the amazing food safety to follow!) No jobs need be lost, and we'd probably see a boon to our economy on a number of fronts (just look at Colorado for an excellent example of regulation of marijuana and they just extended buying hours!), most of all, relief for millions of pain patients, their doctors, and our hospitals who are prosecuted and persecuted excessively under our current system.<br />
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Ending prohibition does not mean a free-for-all. Remember, we are far more sophisticated than that, and we solved these problems ages ago. We just need to recognize these facts. Speaking of facts, when the first drug prohibition laws started in 1914, 1.3% of the population were addicts. And if you've been reading, you know that 1.3% of people are addicts today! That number hasn't changed since there were opium dens. Also, it means that 98.7% of people can take drugs just fine and never become addicted. control and regulation hasn't changed those numbers, but it does generate a load of revenue that is currently disappearing into the black market. If you want to improve the world, end the War on Drugs; America's Longest War.<br />
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We should not put people in prison for what they put into their bodies. We need to stop prosecuting doctors for doing their job. We should include harm-reduction policies in our laws. Treatment is possible, we know this. We also know relapse is as natural as not wanting to take a blood pressure medication. Ideas and new habits take time to set in! <br />
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Therefore, I will keep shouting this from the rooftops as long as necessary.<br />
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<a href="http://www.copssayleagalize.com">Law Enforcement Against Prohibition</a> has a number of excellent videos if you want to find out more. <a href="http://youtu.be/3G2ca3WNCz0">Jack Cole's 12-minute talk is amazing</a>— he was a narcotics agent at the beginning of the War on Drugs in 1970. <br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-47958124285877050302015-10-08T12:48:00.001-06:002015-10-08T12:48:35.778-06:00High Costs of Prohibition<div dir="ltr" style="text-align: left;" trbidi="on">One of the biggest misconceptions about pain control comes from the myth of the addict. Addicts are only a very small percentage of the population, according to many sources, 1.3% of the population. These people wish to escape their reality, because they have difficulty coping with it. Yet 20% of the population, a staggering 25.5 times the number of addicts, have the same problem coping with their reality due to chronic pain. But chronic pain patients are trying to avoid reality, not to separate themselves from responsibility, to be able to be responsible for themselves and their lives. This is just one reason why our current drug prohibition is completely insane. There are many other reasons, a few of which I'll give here.<br />
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We only need to look at the number of people employed by hospitals and emergency rooms to see the human cost of drug policy. A little bit of math on the numer of employees per bed in an ER gives a ratio of 14 employees per bed per shift. That's fourteen people to take care of one. When we are incapable of taking care of our most basic bodily functions, a very small number of patients suck up an enormous number of resources. Looking specificly at the cost of chronic pain, the costs of lost productivity and medical care (in 2015 dollars) is an estimated $613 billion to $694 billion, accorting to the <a href="http://www.ncbi.nlm.nih.gov/books/NBK92521/">National Institutes of Health</a>. This amount, according to the study, represents more than the annual cost of heart disease, diabetes, and cancer <b> combined</b>. Chronic pain is the <i>largest</i> continuous drain on our resources, both medical and economic.<br />
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And the reason chronic pain is the largest continuous drain on our economy is because of the behavior of 1.3% of the population, most of whom outgrow their addiction naturally (<a href="http://www.substance.com/most-people-with-addiction-simply-grow-out-of-it-why-is-this-widely-denied/13017/">50% of addicts give up their addiction naturally, <i>without intervention</i> over time</a>). When we include the $41 billion spent on drug prohibition, we're talking about less than one percent of the population costing our economy an average of $674 billion, annually. This is not counting the human costs as a result of crime, violence, and suffering that results from this prohibition.<br />
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Can we please admit that our current drug prohibition is absolutely insane? We have for decades now done the same thing over and over, expecting that we can irradicate drug addiction with catastrophic results for people who are not addicts. We are hurting law-abiding citizens in the tens of millions for the behavior of a minute few, half of which get better on their own!<br />
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Let's wake up, America. There is no boogieman who lives in chemical substances. No one becomes an addict simply by injesting a drug. Doctor Jeckle and Mister Hyde is a dangerous myth, one we desperately need to dispell. We went to war on drugs, but it has become a war on patients with astronomical costs. We thought we learned our lesson by 1933 with the <a href="http://www.cato.org/publications/policy-analysis/alcohol-prohibition-was-failure">failure of alcohol prohibition</a>, but the sad truth is we are still delusional fools today.<br />
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Come on, America... We're so much better than this. End the War on Patients.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-30346412784301944232015-10-07T11:04:00.000-06:002015-10-08T15:26:43.771-06:00The Case for Mercy<div dir="ltr" style="text-align: left;" trbidi="on">We forget so easily the struggles of our past, and how much time it took us to mature. Time has a dopplar effect. We don't remember every time we had a meal, we don't have to. We just have to remember the important things. How to survive, how to advance and aquire, how to make ourselves and others secure so that we may enjoy life and love. We forget the generations it took and the suffering, and the luck required to be successful. The true story of the past is reduced to history. We leave out the boring bits, we gloss over the pain and the loss, and we focus on the happy ending or the trauma. The former begets motivation to overcome obsticles and reach for a brighter future. The latter begets a cruel system of might makes right, also known as the Laws of Beasts. <br />
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I will be the first to admit I have a pidgeon brain. Success is actually not the best teacher. When we're too lucky, we begin to think the magic dance we're doing makes the magic food pellet fall from the sky god. If we can't see the scientist with the food pellet dispenser set to go off at a random interval, we think it's magic. Oh look what a good job I did! No, silly, you were born at the right time to catch a wave of opportunity that you then surfed into the future. that doesn't mean you weren't also lucky to have escpaed the razor sharp rocks below the surface that have claimed others.<br />
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We forget we came into this world screaming, and that it took time to learn how to address our own needs. We take for granted the work of previous generations. We forget how long it took us to figure out how to stand on two feet. We forget how many times we skinned our knees learning how to run. We remember how to soothe our wounds. We forget how uncomfortable it was while we healed. We remember that when we put this into our bodies it made us feel better. We remember that when we get a good night's sleep, we wake refreshed. But when we're unable to heal, when we're unable to eat, and we're unable to get a good night's sleep, what happens? We turn into canky babies again.<br />
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When living in harsh conditions, one must be harsh to survive. It's school-yard ethics: the bully gets to takesmaller kids lunch money, and people will attach themselves to a bully as a survival mechanism to not be victims themselves. That's a goon squad, and it's co pletely natural and totally inhumane. That's why we train our children out of that behavior. Most of the time.<br />
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In times of trauma, our minds switch off and instincts kick in. Your brain goes into hyper-awarness-crisis-mode. Reflexes are sped up, time seems to slow, but only because we're going faster than normal and are able to process more visual stimulii than normal. If we're lucky, there's a hard-wired circuit where we encountered this before and survived. If so, we act seemingly without thinking. That's because our general reflexive thought processes (our awareness of our awareness) is redundant and slow. Second-guessing costs valuable time in a crisis— time which could spell the difference between surviving and dying.<br />
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This is why the ability to self-soothe is so important. All children have a fear of the dark at somepoint in their lives. Heck, many adults have it. And that's completely natural, probably permanently hard-wired in our genetic code. That noise you just heard coming from the place you can't see... Was that floor-bords creaking as someone rolls over in bed? Or is that the big scary monster that's coming to eat you? Guess wrong and it's your life. It takes years to learn how to sleep alone, because to our cavemen-child minds we know it's just not safe.<br />
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Civilization is a very thin veneer over millenia of animal wiring. And our boogeymen and our need to punish wrong-doers even at sacrifice to ourselves is how life is for most. What animals fight for territory, mating rights, and resources? All of them, down to the microscopic. Reason is the luxury of a safe and fulfilled body. Self-soothing is vital to recovery after a crisis. If you lack those skills, or if you were never taught those skills, or if you are just unable to meet your body's demands, your reasonable mind shuts off and your fight or flight instincts kick in.<br />
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And if you are trapped in your suffering, you scream and flail. Flight is no longer possible, so fight kicks in. Animals do this— any vet will tell you that chronic pain in animals often results in aggression. Dementia patients do the same, and why wouldn't they? What's more humane: chaining them up as we do to animals, or easing their distress so they don't harm themselves or others? That's your choice: treat people as intelligent beings capable of being reasonable, or watch them behave like animals and then treat them like animals because you wouldn't be reasonable?<br />
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On the Today's Show today the mentioned that 2 million are addicted to pain pills and 500,000 are addicted to heroin. But those number are a drop in the bucket compared to the 63,800,000 who are crippled by chronic pain. For every two addicts we address, we punish fifty-one people in chronic pain. We are destroying ourselves over trying to control a few when the masses are crying out in pain. Do you know how much money we would save every year if we got rid of the stupid assertion that adults are children and cannot be trusted not to touch the poison?<br />
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Addicts in open recovery, such as comedian Russel Brand have confessed never once did they think: I musn't do drugs because drugs are illegal! and if we just taught all doormen how to do the sobriety test at the bar, you could direct them to the sobering up area and release them when their safe to drive (the "follow my finger" neurology test is impossible to do when you're drunk, and possible when you're sober, no matter how much of an alcoholic you are). But there's a whole lot of money and very little paperwork in prosecuting drunk drivers. Real criminals are difficult and cost a lot of money and the jail makes the money.<br />
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But we will willingly destroy ourselves to punish "evil-doers." Never once realizing that "evil" is completely relative based on tradition, superstition, animal brains, and a planet that can shake us like a cold. It is us who are fragile. we don't understand the world by a long-shot. We're writing laws based on a morality code that is only going to change with time. The laws still live, enforced by a generation who weren't there to experience why we made that decision then, and whether or not it's still applicable now! Times change and what offends grandma and grandpa we're not so uptight about. <br />
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Can we not give up this silly crusade called the War on Drugs? Can we take back some of our dignity as adults and show some mercy on people struggling? Pleasure-seeking is not a sin, nor is pain avoiding. We all do things to ease our bodies and our minds, and we have been taught by generations and our own biology to do so. We have 52 people suffering for every two that use the same substance for psychological pain rather than medical pain. Either way it's someone suffering who needs compassion and mercy, not control, gatekeepers, and punishment.<br />
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End the Shadow War on Patients.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-79591126432075096442015-09-22T08:46:00.000-06:002015-09-22T08:46:00.244-06:00Opiate-induced Sleepwalking<div dir="ltr" style="text-align: left;" trbidi="on">One reason I'd make a terrible #junkie is that I can't take more than 10mg of methadone 3 times a day. Any junkie will tell you that's a BABY dose. I helped the homeless including driving junkies to the methadone clinic when I volunteered in Seattle, and most methadone clinics give out a syrup containing 250mg of methadone for a once per day dose. Dear god, that would probably kill me. but the reason I can't go higher than 10mg/day is that on any higher dose, even for breakthough pain, I will either experience insomnia or sleepwalking.<br />
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The first time I went sleepwalking I left my friends' apartment, took their flashlight, left their apartment building, and sat for 5 minutes, ASLEEP, on 11th Avenue in downtown Seattle (not the safest of places to be a woman asleep on the curb). Then I went back inside (thank god I wasn't locked out) leaving the flashlight downstairs for evidence to myself that I was unconcious of my own actions. <br />
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I did this immediately upon falling asleep, apparently, because the lady of the house "thought I had gone out to smoke a cigarette, but [I wasn't] gone long enough... If that doesn't scare you away from misusing your opiates, nothing will. To this day it scares me to live alone, for that and may other reasons. I have a service dog to let me know when a bad migraine is coming, so I can also sleepwalk proof my house before going to bed. <br />
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If you watch Mike Birbiglia's first movie about him becoming a stand-up comic, you can see just how dangerous sleepwalking can be. I would sleepwalk and talk even into my teen years, but I grew out of it. Or so I thought.<br />
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So yeah... Me? So not a junkie.<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com3tag:blogger.com,1999:blog-7902504831906503458.post-54594226451974258872015-09-21T08:22:00.000-06:002015-09-21T08:22:53.696-06:00Judging a Cover<div dir="ltr" style="text-align: left;" trbidi="on">Doctors fancy themselves judges. Any lawyer would laugh at that, but patients know the truth. Even the most well-intentioned doctor is judge, jury, and sadly far too often, executioners. I can't tell you how many times I almost died due to the neglegence of a doctor. There was the original dismissal of my symptoms of adrenal insufficiency including a full-blown Adrenal Crisis the night before my colonoscopy. There were the cries of, "You're so young!" and "You look so good!" Now my problem is I live in a conservative town, I look much younger than my 41 years, I have tattoos (last one so painful from my neuropathy I quit ink 7 years ago), and I've been on pain pills they just don't prescribe in the Middle West. Hence, I'm castigated as a junkie when I have no history of substance abuse.<br />
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What I do have is just enough chemical knowledge to make it seem like I'm a junkie. Doctors think they're the only people who can pronounce fancy names. They can't imagine that a professional writer, nay, a health writer could have a grasp on how to read. Do you remember in kindergarten when they taught you how to pronounce big words by breaking them up into smaller ones? Yeah, unless you have a medical degree you couldn't possibly know how to say dextromethorphan or trinitrotoluline (TNT for you folks at home).<br />
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And if you happen to talk fast, that couldn't possibly be because you're able to think fast. No one can think fast without drugs!! Well, I don't take drugs for my ADHD because speed can kill me with my adrenal insufficiency, and it makes my heart race at unsafe levels. I was diagnosed ADHD when I was 18. Took medication for three months, then had to quit. Oh, the ritilin did exactly what it was supposed to: for the first time I could remember more than three things at once. I would have stayed on it if I could. Instead I developed coping skills. Now I can out remember both my parents; dad''s been diagnosed ADHD since he was 45 and my mother takes the Adderall, also called dextroamphetamine.<br />
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Did you know oxygen is a drug? Yeah... A drug. The $#!+ we need to breathe and live is a prescription drug if you need a respirator, or if you get it in hospital. But go down to any hardware store and you can buy giant tanks of it, no prescription. It's used in acetyline torches. Did you know that we use sodium to light our streetlights? If your street lights are a nasty pale orange, that's a sodium light, the same stuff that ups your blood pressure. Did you know potasium can kill you if you inject it too quickly into a vein? It's an essential vitamin, but one good dose to the vein and you'll never need vitimins again. Did you know aspirin is made from coal tar? Or that most of our "synthetic" drugs (not really synthetic because coal and coal tar both come from plant matter) come from?<br />
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Oh but I'm just a patient... I couldn't actually know something. Having knowledge means I'm a threat. I know when doctos are trying to make $#!+ fly without wings, so I'm a threat. We can't have our almighty doctors threatened with the truth! That might lead to the ethical treatment of patients and having to admit when they've made a mistake! <br />
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The HORROR!!!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-64014759269036745412015-09-17T13:12:00.000-06:002015-09-17T13:12:01.901-06:00Ignorance is the bliss of Innocence<div dir="ltr" style="text-align: left;" trbidi="on">I hold no illusions. I am not a stranger to pain nor high-stakes power games of Shakespearian proportion. The truth is brutal and beautiful, sometimes at the same time. But my people, people with disabilities, will understand the knowledge I'm about to lay down. They've lived it, and are living it. <br />
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I've been dealing with a lot of ignorance lately and I have been doing everything in my power to forgive them, for they know not what they do. Fourty-eight hours ago, however, I hit my limit. I'm though coddling healthy people because they don't understand. I will gently teach them, and if they don't want to hear it, I will yell it from the rooftops: <b>Ignorance of the law does not mean innocence. Discrimination <i>is</i> Discrimination.</b><br />
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I am not a second-class citizen. I'm a separate but equal citizen, separated from the masses because of my disability. In their ignorance, they have started wringing their hands about how it's exploitation to not pay people with disabilities minimum wage for their work. <br />
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Wow. They should really read my book, because that stance shows their absolute ignorance of working while disabled. When I worked at Microsoft, there were all sorts of perks that weren't included in your salary like free cold beverages including fresh milk. A cafeteria that served resturant-level food including daily-delivered sushi, and you could take a break during work hours to play basket ball, video games, et cetera. <br />
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I give this example because what the Healthy people don't understand is that many of us need to be underpaid so we don't lose our benefits and can get out of the house for a reason other than medical interventions. That's a huge gift in itself. Additionally we become contributing members of society again, something people in this economy can understand. Having a job you love at any salary is priceless. I know it was to me, I blogged about my experience when it happened. And I took a pay cut for that job, happily.<br />
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When you force companies to pay minimum wage, that means your taking a paying job away from some other person with a disability. How is that a good idea? Your noble cause would have a devistating effect in reality. I will not idly by and let you do that to my people. We are not livestock you can slaughter to feed you political agenda.<br />
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I will not let the dreams of my people be defered. We ALL have a Constitutional right to pursue Happiness. Ignorance is no defense. This is my Call to Action: <b>#WiseUp</b> and show a little compassion!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-62968760909159134742015-09-14T23:47:00.000-06:002015-09-14T23:47:39.960-06:00Invisible Disabilities 8th Annual Awards Ceremony<div dir="ltr" style="text-align: left;" trbidi="on">if you live in the #Denver area or can travel to the Denver area by October 23<sup>rd</sup>, you WILL want to join us. If you don't know the story about <a href="http://invisibledisabilities.org/">InvisibleDisabilities.org</a>, you should: they <i>coined the term</i> "Invisible Disabilities," and testified in front of Congress to include people like me, who are disabled, but who make disability look awesome.<br />
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I've recently moved back to St. Louis into a very snobby building, and you wouldn't believe the discrimination I've faced. Well, i take that back, you probably do know. I even had to write the Board of Directors of my building and remind them of the Americans with Disability Act, the Reform Act of 1973, and the Fair Housing Act of 1988. My father is an attorney, and they went to his place of work to hand deliver a letter of complaint agains me like I'm some child, and I'm over 40! <br />
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So if you think discrimination against People with Disabilities is a thing of the past, you are very poorly informed. Just because there are laws doesn't mean people follow them, especially people with power. But they have no idea who they're effog with. My neighbor used to be the head of the local chapter of the ACLU.<br />
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They won't know what hit them. But they will know who. <evil grin><br />
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Do join us in Colorado!! We'd love to have you. Tickets on sale NOW!<br />
</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0tag:blogger.com,1999:blog-7902504831906503458.post-27101527707027545512015-09-03T10:07:00.001-06:002015-09-03T10:12:51.610-06:00The System and Dr. Ruan<div dir="ltr" style="text-align: left;" trbidi="on">Growing up in a family of lawyers and politicians, you're raised to understand The System. What most people don't understand is that fiction is dramatic to be exciting and entertaining. The real world is a great deal different. The system takes power, nuance, and a lot of work on your time and your dime. Depending on where you are, the rules are always different, but there are always rules. Be a team player and you just might get somewhere. Screw up, and you'll find just how limiting the System can become. Not all cages have bars you can see. Doesn't mean you're not in a cage. Ask anyone whose lived in a ghetto, they know.<br />
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Patience, obedience, and manners are all a part of the dance. When you're not the authority, you better know how to relax and follow their lead. This is the same for police as it is for government bureaucrats as it is for doctors. The problem is, in a situations like that, even normal behavior can be painted as criminal shown in the "right" light. Not everyone knows what's normal and what's not, so if you start throwing big numbers around without any baseline for comparison, people assume it's impressive. Having a frame of reference is vital to know where things really stand.<br />
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<blockquote>"The numbers are pretty stunning. A 2012 article in the Annals of Family Medicine noted that the average primary-care physician has about 2,300 patients on his "panel"— that is, the total under his or her care. Worse, it said that each physician would have to "spend 21.7 hours per day to provide all recommended acute, chronic and preventive care for a panel of 2,500 patients." I'm not sure I'd want that doc seeing me at the end of that long a day at the office.<br />
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"According to a 2013 survey by the American Academy of Family Physicians, the average member of that group has 93.2 "patient encounters" each week — in an office, hospital or nursing home, on a house call or via an e-visit. That's about 19 patients per day. The family physicians said they spend 34.1 hours in direct patient care each week, or about 22 minutes per encounter, with 2,367 people under each physician's care."<br />
— <a href="http://www.washingtonpost.com/news/to-your-health/wp/2014/05/22/how-many-patients-should-your-doctor-see-each-day/">Washington Post - "How Many Patients Should Your Doctor See Each Day?" April 22, 2014</a></blockquote><br />
Now a little math. Multiply 2,000 by once per month visits and that's 24,000 visits per year. Why once a month? Because pain medications are only doled out in once-per-month written prescriptions. Multiply that by three years, and that's 72,000 prescriptions over three years.<br />
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So when the news tells me that a pain doctor has written an "alarming" 30,000 prescriptions over three years, and try to paint that as excessive, first I laugh at the lie, and then I get really upset at the System. <br />
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This whole case against Dr. Xiulu Ruan and her fellow doctors is a farce. Doctors are <i>expected</i> to be able to diagnose in three minutes, and sometimes less! Do you think a gunshot wound waits for thirty minues for the doctors to interview their patients? The appointment is a formality <i>for the patient</i>. Most doctors are <i>much</i> smarter and faster than that. <br />
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When you see that she's also writing far <b>fewer</b> prescriptions than any given general practitioner, then the DEA's stance that that this is a "bad doctor" is just laughable. What's not laughable, however is the truth. The DEA is tearing apart the livelyhood of two doctors, smearing their good names, destroying a tax-paying business, costing a mountain of legal fees, destroying the jobs the doctors entire support staff, and putting all their patients lives on hold and at risk.<br />
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"Why?" You ask.<br />
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Because drug dealers shoot back. Doctors don't. The burden of defense is on the doctors. That pumps a hell of a lot more money into the System than taxes. All those doctors' possessions have been seized (asset forfiture), and the System is not required to give it back, even if the doctors are found innocent. Where do you think those possessions end up? Oh, some of it gets inventoried, sure, but things disappear too. <br />
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Who watches the watchmen? Do you think a uniform magically makes someone invulnerable to human weakness? Why do you think transparency in the System is important? Because the System will happily eat you for breakfast. Limits on Government and the rest of the System protects us from their tyrrany.<br />
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Plus, people in the System are pre-approved to go to the press and spread half-truths all day long. They can pat themselves on the back for "catching the bad guys." They look like they're doing their job, when actually it's the doctor's job to report to the DEA and provide the evidence to the System that eventually is used against them. It's really easy to do your job when others are required to do it for you. The DEA has a sweet racket going on. They don't have to do anything except bust law-abiding citizens and all other pain doctors are now terrified to do their job and help patients. That's a win-win in their book.<br />
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Pain, left untreated or under-treated can easily grow into chronic pain<sup>*</sup>, for reasons not fully understood at this time. Does the DEA care? Not a bit. To them, every patient is a junky and every doctor a dealer and hospitals are cartels. They can force their victims through laws and regulations to dig their own graves.<br />
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Welcome to reality.<br />
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*PubMed — Can J Anaesth. 2014 Feb;61(2):112-22. doi: 10.1007/s12630-013-0087-4. Epub 2013 Nov 26.<br />
<b>The transition from acute to chronic pain: understanding how different biological systems interact.<br />
Mifflin KA1, Kerr BJ.</b> Centre for Neuroscience, University of Alberta, Edmonton, AB, Canada.</div><div class="blogger-post-footer">@MakeThisLookAwe</div>.http://www.blogger.com/profile/00695167212487592726noreply@blogger.com0