tag:blogger.com,1999:blog-76740145331300844762024-03-13T20:29:04.161-07:00Chronic Leigh's Fibro DiaryLiving with fibromyalgia and chronic pain.Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-7674014533130084476.post-162257836633886802016-05-21T08:08:00.002-07:002016-05-21T08:09:30.028-07:00Fibromylagia and Brain Fog<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-_qy2ni6SXTc/V0B1vd8TONI/AAAAAAAAAMI/BQeu0i9nczMA_QF6czit6osSwQYOkW3DwCLcB/s1600/Fibromyalgia%2Band%2Bbrain%2Bfog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://2.bp.blogspot.com/-_qy2ni6SXTc/V0B1vd8TONI/AAAAAAAAAMI/BQeu0i9nczMA_QF6czit6osSwQYOkW3DwCLcB/s400/Fibromyalgia%2Band%2Bbrain%2Bfog.jpg" width="400" /></a></div>
My mind hasn't been truly strong and clear for a couple of years now. Constant pain, stress, fatigue, and crummy sleep take a toll on the brain's ability to keep up. <br />
<br />
Plus my job requires intense focus, so when it's quitting time I can almost feel my brain turning to mush. It's not drug side effects, because I'm not on anything for fibro. Just my trusty thyroid meds that I've been on for years and years.<br />
<br />
Anywho, it's worth nothing that after a few weeks of being on my <a href="http://www.chronicleigh.com/search/label/gluten-free">gluten-free diet</a>, I felt darn near lucid. But that faded when stress at my job got kicked up a notch and my pain and IBS symptoms increased. <br />
<br />
<h4>
My most recent brain fog story</h4>
<br />
We finally sold a property in another state after three years of having it on and off the market. (Talk about living a financial nightmare: two homes, two illnesses, and one income.) When the check for proceeds from the sale arrived, I kept putting off taking it to the bank to deposit. It was only written out to me, so it was my responsibility.<br />
<b></b><br />
<b>Husband:</b> You ready for me to drive you to the bank?<br />
<b>Me:</b> I have all these meetings and work. I'm too tired to shower.<br />
<b></b><br />
<b>Husband:</b> You want me to drive you to the bank today?<br />
<b>Me:</b> I just can't; I'm exhausted and I don't want to be seen in public like this.<br />
<br />
<b>Husband:</b> How about now? You need to get that deposited.<br />
<b>Me:</b> Look at my hair? They don't let people wear hats inside the bank I don't think.<br />
<b>Husband:</b> We can just go to the drive-up teller. You don't have to go inside, you know?<br />
<b>Me:</b> Oh. My. God. That's brilliant. Yes! Let's go.<br />
<br />
I get so fixated on one way of doing things that I can't even see that there are other options, let alone try to evaluate them all and pick the best one. <br />
<br />
Before my fibromyalgia diagnosis and celiac suspicions, my mind was a wonder. I felt smart and qualified. I miss that person. A lot.<br />
<br />
<h4>
</h4>
<h4>
Brain fog, medically speaking</h4>
<div>
<br /></div>
Brain fog is a pretty common complaint for fibromyalgia patients. Sometimes it's severe and can be as life-altering as constant pain and fatigue.<br />
<br />
As with most things fibro-related, the jury's still out on why brain fog happens. There are some theories out there about causes though, including:<br />
<br />
<ul>
<li>Inability to get restorative, refreshing sleep
</li>
<li>Abnormalities in cranial blood flow
</li>
<li>Brain abnormalities
</li>
<li>Premature aging of the brain
</li>
<li>Mental distraction caused by pain (brain fog gets worse when pain is worse) </li>
<li>Anxiety</li>
<li>Stress</li>
<li>Sensory overload</li>
<li>Medications taken to treat fibromyalgia</li>
</ul>
I experience the full gamut of brain fog signs. I forget words or can't recall them quickly, get dizzy and lose my sense of direction, am completely unable to multitask, can't remember where I put things or where buildings are located, and am easily distracted. I mean, I know people joke about walking into a room and forgetting why, but I've elevated forgetting purpose and intent to an artform!<br />
<br />
Do you suffer from brain fog too?Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com1tag:blogger.com,1999:blog-7674014533130084476.post-70152294703576222852016-05-16T15:05:00.000-07:002016-05-20T07:44:14.400-07:00Fibromyalgia Awareness: Resources for Patients and their Families<div class="separator" style="clear: both; text-align: center;">
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Because May is Fibromyalgia Awareness Month, I wanted to compile a list of online fibromyalgia resources for you to use and share. <br />
<br />
Whether you're new to the diagnosis and looking for answers, the loved one of a fibromyalgia patient, or a seasoned fibro warrior, I'm sure you'll find some—if not all of these links—helpful. <br />
<br />
If there are additional resources you'd like to share, please post your links in the comments.<br />
<br />
<h4>
Fibromyalgia Resources For Patients & Families</h4>
<div>
<br /></div>
<a href="http://www.fmaware.org/" target="_blank">National Fibromyalgia Association</a><br />
FMaware.org keeps you up to date on important information pertaining to fibromyalgia and related topics.<br />
<br />
<a href="http://www.fibromyalgiaawareness.com/" target="_blank">FibromyalgiaAwareness.com</a><br />
Dedicated to raising awareness about Fibromyalgia and offer online support. Find fibromyalgia information, news, interviews and tips.<br />
<br />
<a href="https://www.myfibroteam.com/">MyFibroTeam</a><br />
A social network for people living with fibromyalgia.<br />
<br />
<a href="http://www.niams.nih.gov/health_info/Fibromyalgia/" target="_blank">Questions and Answers about Fibromyalgia</a><br />
This article contains general info about fibromyalgia: what fibromyalgia is, who gets it, and what causes it, how it's diagnosed, and how it's treated.<br />
<br />
<a href="http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/symptoms/con-20019243">Mayo Clinic Fibromyalgia Symptom List</a><br />
Are you wondering if you're experiencing symptoms of fibromyalgia? This list may help.<br />
<br />
<br />
<h4>
Available Fibromyalgia Treatments</h4>
<div>
<br /></div>
Fibromyalgia treatment options vary based on symptoms and approach. Treatment might include any combination of the following:<br />
<ul class="b_vList b_bullet">
<li>Prescription drugs</li>
<li>Alternative therapies including massage, physical therapy, chiropractic treatment, and acupuncture</li>
<li>Vitamins and supplements</li>
<li>Moderate exercise under doctor's supervision</li>
<li>Lifestyle changes, including diet, meditation, and self-pacing</li>
</ul>
<div>
<a href="http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm107802.htm">FDA-Appoved Drugs to Treat Fibromyalgia Pain</a></div>
<div>
People with fibromyalgia may be treated with pain medicines, antidepressants, muscle relaxants, and sleep medicines. Learn more about FDA-approved treatments at fda.gov.</div>
<div>
<br /></div>
<div>
<a href="http://physical-therapy.advanceweb.com/Features/Articles/Aquatic-Therapy-Supports-Fibromyalgia-Patients.aspx" target="_blank">Aquatic Therapy for Fibromyalgia</a></div>
<div>
Aquatic therapy has been recommended for the treatment of fibromyalgia syndrome (FMS). Learn why in this summarized study.</div>
<div>
<br /></div>
<div>
<a href="http://www.huffingtonpost.com/2014/01/17/vitamin-d-pain-fibromyalgia_n_4618697.html" target="_blank">Vitamin D Supplements for Fibromyalgia</a></div>
<div>
Vitamins (especially Vitamin D) have been suggested for helping ease the symptoms associated with fibromyalgia.<br />
<br /></div>
<a href="http://www.prevention.com/fitness/fitness-tips/">5 Best Workouts For Chronic Pain</a>
<br />
If you have fibromyalgia, exercise may improve your quality of life and reduce pain. Prevention lists the best workouts for fibromyalgia sufferers.<br />
<br />
<h4>
Fibromyalgia Books</h4>
<div>
<br /></div>
<a href="http://amzn.to/24VBNvk">Take Back Your Life: Find Hope And Freedom From Fibromyalgia Symptoms And Pain</a> by Tami Stackelhouse <br />
<div>
<br />
<a href="http://amzn.to/1TkkXB9">The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor </a>by Ginevra Liptan<br />
<br /></div>
<a href="http://amzn.to/1TkkQp8">Foods that Fight Fibromyalgia: Nutrient-Packed Meals That Increase Energy, Ease Pain, and Move You Towards Recovery</a> by Deirdre Rawlings <br />
<br />
<a href="http://amzn.to/24VCjcN">The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy!</a> by Jacob Teitelbaum M.D. <br />
<br />
This post is part of Being Fibro Mom's <a href="http://www.beingfibromom.com/chronic-friday-linkup-18/" target="_blank">Chronic Friday Linkup</a>.
Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com1tag:blogger.com,1999:blog-7674014533130084476.post-18412521430007893142016-05-10T09:11:00.000-07:002016-05-10T09:11:59.139-07:00Amy's Bowls Mexican Casserole Gluten Free ReviewI've completed three weeks on a gluten-free diet. Without the help of packaged foods and my husband, I don't think I'd have made it this long.<br />
<br />
<a href="http://amzn.to/1OeQd5s" target="_blank">Eating gluten free</a> is so, so hard, but especially for someone who's so physically spent she struggles to walk down the hallway, is on the verge of passing out after every shower, and doesn't possess enough strength at the end of an average day to roll over in bed at night.<br />
<br />
With my perpetual brain fog, reading an ingredients list is a challenge. Nevermind trying to plan meals or alter recipes at this stage. It. Just. Isn't. Gonna. Happen.<br />
<br />
At least for now. <br />
<br />
So here's another of my gluten-free food reviews. I bought this myself and haven't been compensated in any way for what I'm about to tell you.<br />
<br />
<h3>
Amy's Bowls Mexican Casserole</h3>
<div>
<br /></div>
Price: $3.99<br />
Count: 1<br />
Taste: 5/5<br />
Texture: 5/5<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-_ERT-tuNIvQ/VzIAfiNSBKI/AAAAAAAAALg/LUvldWLb-EYV4WPxtdnAWNCvYMf7vCd3wCLcB/s1600/amys%2Bbowls%2Bmexican%2Bcasserole%2Breview.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="319" src="https://3.bp.blogspot.com/-_ERT-tuNIvQ/VzIAfiNSBKI/AAAAAAAAALg/LUvldWLb-EYV4WPxtdnAWNCvYMf7vCd3wCLcB/s320/amys%2Bbowls%2Bmexican%2Bcasserole%2Breview.jpg" width="320" /></a></div>
<b>The Bad News</b><br />
As with everything gluten free, it costs more money. Four dollars for a meal that only serves one person? I don't know how much money you make, but for me that's brutal. Chronic illnesses are so freaking expensive, throw special dietary requirements in and...good God.<br />
<b><br /></b>
<b>The Good News</b><br />
This tastes fantastic. I've always found that Mexican dishes stand up really well to the freezer. This one does too. It doesn't taste like a frozen dinner at all, and when my husband wants to get a burrito from the local Mexican restaurant, I can pop one of these in the microwave without feeling left out or sorry for myself. I think it's <i>that</i> yummy!<br />
<b><br /></b>
<b>The Verdict</b><br />
Buy this. Serve with pico, sour cream, guacamole, lettuce, or whatever you like. (For Cinco de Mayo, I splurged and had a Cayman Jack Margarita*.)<br />
<br />
<br />
* This drink is "crafted to remove gluten." Not recommended for those with celiac disease, but I tried it anyway without reaction. Don't be stupid like me, unless you're stupid like me.Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-59568344152519411192016-05-04T10:02:00.000-07:002016-05-04T10:02:03.678-07:00Practicing Self-Care with a Spoonie Progress Report<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-5FYbwhAsknE/VyoqO3YERXI/AAAAAAAAALA/zWRVTvDWvf0s1qibrHL1ZkCPc1HN-9zywCLcB/s1600/your%2Bspeed%2Bdoesnt%2Bmatter%2Bforward%2Bis%2Bforward.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-5FYbwhAsknE/VyoqO3YERXI/AAAAAAAAALA/zWRVTvDWvf0s1qibrHL1ZkCPc1HN-9zywCLcB/s320/your%2Bspeed%2Bdoesnt%2Bmatter%2Bforward%2Bis%2Bforward.jpg" width="277" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Via <a href="https://www.bloglovin.com/blogs/good-vibe-10967517/photo-4292508748" target="_blank">The Good Vibe</a> on Bloglovin'</td></tr>
</tbody></table>
At the end of every month, I have to compile a progress report for my job. It's a little tedious, but oddly rewarding. <br />
<br />
To complete the report, I go through my worklogs and note every project I worked on for the last 30-ish days. It's arranged so that my boss and my boss's boss can see what a badass I am at a glance. But you know what? It also helps <i>me</i> see what a badass I am. <br />
<br />
As a Spoonie, I need to take note of the things I accomplish on any given day. It's so easy (but so futile) to obsess over all of the things I can't do or can't do as well as I used to since my fibromyalgia diagnosis.<br />
<br />
For the record, that includes putting a sticker on my Chart of Life™ any time I:<br />
<ul>
<li>Take a shower</li>
<li>Make a meal</li>
<li>Put on real pants</li>
<li>Fold a basket of laundry</li>
<li>Change the sheets on my bed</li>
<li>Leave the house</li>
<li>Put an entry in my food diary</li>
<li>Make time to soak up some sun</li>
</ul>
<div>
You get the idea.</div>
<br />
I'm lucky to have a full-time job with benefits, but there have been too many days in the past couple of years where I've been riddled with anxiety, fretting that I would lose my position due to chronic illness.<br />
<br />
If I don't work, there is no money to pay the mortgage or get groceries. And being sick all the time is catastrophic enough.<br />
<br />
But I'm not going to worry about those things today. I'm going to take another glance at my progress report for work and give myself a <i>hellzyeah!</i> (or two) for a job well done, despite life's mentally and physically crippling challenges.<br />
<br />
Even if you don't work, I encourage you to keep track of all the little but important things you do. For a few minutes a day, you can shift your focus. That's empowering.<br />
<br />
So grab a <a href="http://amzn.to/23pvU6R" target="_blank">journal</a> or open a new draft in your blog and start your Spoonie Progress Report for May!<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-23689333299762353612016-04-27T07:00:00.000-07:002016-04-27T07:00:00.142-07:00Immaculate Gluten Free Chocolate Chunk Cookies ReviewOn my husband's last trip to Meijer, he bought me Immaculate Gluten Free Chocolate Chunk Cookies to try while I continue to contemplate whether or not I have <a href="http://www.chronicleigh.com/2016/04/spoonie-validation-new-visible-sypmtoms.html">Celiac Disease</a>.<br />
<br />
We've always liked the convenience of refrigerated dough, whether we buy pre-packaged stuff or make it from scratch and store it in air-tight containers. Small batches of freshly baked cookies are where it's at, if you ask me.<br />
<br />
<h3>
Immaculate Gluten Free Chocolate Chunk Cookies</h3>
Price: 3.59<br />
Count: 12<br />
Taste: 5/5<br />
Texture: 4/5<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-uW102QgT7OE/Vxa9t3xphxI/AAAAAAAAAJ4/w5VMZdHv7VY3sC-RsiZu1X_YEvZNXz0gACLcB/s1600/immaculate%2Bgluten%2Bfree%2Bchocolate%2Bchunk%2Bcookies.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-uW102QgT7OE/Vxa9t3xphxI/AAAAAAAAAJ4/w5VMZdHv7VY3sC-RsiZu1X_YEvZNXz0gACLcB/s320/immaculate%2Bgluten%2Bfree%2Bchocolate%2Bchunk%2Bcookies.jpg" width="180" /></a></div>
<b>The Bad News</b><br />
These cookies were neither crisp nor chewy; they seemed almost raw even when thoroughly cooked. In fact, it was kind of surprising that at the end of their baking time, they were very brown but not hard as a rock.<br />
<br />
Also, who needs that "please do not eat raw dough" negativity? Am I right?<br />
<b><br /></b>
<b>The Good News</b><br />
The taste is sweet and chocolatey and sure to satisfy a dessert craving. I have a hunch that these suckers would be fantastically gooey topped with some vanilla ice cream. (Incidentally, these are dairy-free cookies, so if you're getting them for that reason? Totally skip the ice cream.)<br />
<b><br /></b>
<b>The Verdict</b><br />
To me these are worth the price. First, you can make just a few at a time if you want. Plus, they're handy if you're looking for an indulgent treat that doesn't require the effort of actual baking and the hassle of clean up.<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-66543146925047459262016-04-25T07:57:00.001-07:002016-04-25T07:57:41.588-07:00What It's Like to Leave the House with Fibromyalgia<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-tfg31Y65_D0/Vx4wQUecpsI/AAAAAAAAAKw/CE9toUBCc1U2VJr109huy-MsxIB6H0fVwCLcB/s1600/20160416_133152.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://3.bp.blogspot.com/-tfg31Y65_D0/Vx4wQUecpsI/AAAAAAAAAKw/CE9toUBCc1U2VJr109huy-MsxIB6H0fVwCLcB/s320/20160416_133152.jpg" width="320" /></a></div>
I spent about two hours outside this weekend, including a short trip with my husband to our nearest big box store's garden center. According to my D Minder vitamin D app, I made nearly 8,000 IUs of vitamin D this weekend.<br />
<br />
I accomplished something!<br />
<br />
Standing up was hard and walking around was even harder. I've been struggling mostly with muscle weakness and vertigo lately, so I clung to the cart the entire time. Toward the end of the ten-minute romp through potted plants and stacks of mulch, all I wanted was a chair or bench. My legs were so tired. So shaky. So weak.<br />
<br />
My husband paid and chatted with the cashier. I just smiled; my brain felt slow. I needed to focus on standing. I worried that if I tried to talk, I'd lose focus on my legs and just collapse embarrassingly.<br />
<br />
When we made it back to the car, I dropped myself into the passenger seat. There's no such thing as controlled motion with me right now. Then I had to clutch my pant legs and lift so I could get my legs inside the vehicle and close the door.<br />
<br />
The rest of the day at home was a struggle too, but at least I got to struggle while wearing pajamas. With lawn mowers going all weekend and fuzzy seeds and pollen floating in the air, my allergies were intense. I took <a href="http://amzn.to/26ok414" rel="nofollow" target="_blank">Zyrtec</a>; it helps tremendously with my sneezing and watery eyes, but can leave me my dizzy and extremely tired. So I napped in a lounge chair in the back yard while my husband spread mulch and planted rhubarb for me.<br />
<br />
When it was time to eat dinner, I was so weak. I couldn't life myself from the couch. I couldn't cook my own dinner. I went to bed at 9:00 and fell asleep right away. At least I didn't have to deal with insomnia too.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-75382946635063803012016-04-22T06:30:00.000-07:002016-05-04T10:13:29.339-07:00Fibromyalgia, Chronic Pain, and the Movie Cake<div style="text-align: left;">
<em>If you haven't yet seen </em>Cake<em> but want to, you might want to bookmark this post for later.</em></div>
<div style="text-align: center;">
<i><br /></i></div>
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Sunday afternoon, my husband, Dan, and I were looking for something to do that didn't require a whole lot of effort.
<br />
<br />
"Hey," I said, "<em><a class="amzn_ps_bm_tl" data-amzn-link-id="cb4305f65e9e37e9986434c4cc5cbd21" data-amzn-ps-bm-keyword="Cake" href="http://www.amazon.com/Cake-Sam-Worthington/dp/B00TY6CM7U/ref=as_li_bk_tl/?tag=suespie-20&linkId=cb4305f65e9e37e9986434c4cc5cbd21&linkCode=ktl" id="amznPsBmLink_6432386" rel="nofollow" target="_blank">Cake</a><img alt="" border="0" height="0" id="amznPsBmPixel_6432386" src="https://ir-na.amazon-adsystem.com/e/ir?source=bk&t=suespie-20&bm-id=default&l=ktl&linkId=cb4305f65e9e37e9986434c4cc5cbd21&_cb=1438101518279" style="border: none; height: 0px; margin: 0px; padding: 0px; width: 0px;" width="0" /></em> is still in our Netflix queue."
<br />
<br />
A part of me wanted to see it when it was still at the theater—the part of me filled with delusions about being able to sit in a comfortable chair for 102 minutes, let alone an uncomfortable one. The sane part of me, however, knew I'd be better off watching it at home. And, luckily, the sane part of me still wins most of the time.
<br />
<br />
Five minutes into the movie, I was fighting tears. Jennifer Aniston was so believable playing the role of Claire Bennett.
<br />
<br />
"It's making me hurt just to watch her," Dan—who knows chronic pain in the form of <a href="http://www.webmd.com/arthritis/psoriatic-arthritis/psoriatic-arthritis" target="_blank">psoriatic arthritis</a>—said. I agreed. (In fact, since I saw the movie two days ago, I've been in a flare. Perhaps I identified with her pain a little too much for my own good?)
<br />
<br />
There were many things in the movie to which I could relate, but two really struck me: Claire's hair and her clothing. It's not that I want to go out in public looking like a giant sack of potatoes; it's just that it's the best I can do most of the time. On the rare occasion that I feel up to doing more to make myself presentable, I don't want to waste my energy on something so superficial. I'd rather use my energy to make a meal or wash and fold some laundry. So combing the tangles out of my hair after a shower? Not on your life, man.
<br />
<br />
If you can tell that my hair has been blown dry, you know I'm having one of the best days I have had in 14 to 18 months. Or at least I want you to believe that I am.
<br />
<br />
<h3>
Light a Candle</h3>
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<br /></div>
Here's a little exercise that may help you comprehend how chronic pain affects everyday life for people. Go grab a <a class="amzn_ps_bm_tl" data-amzn-link-id="6b05139c15d5eae2436d3cb06d55c545" data-amzn-ps-bm-keyword="lighter" href="http://www.amazon.com/BIC-Multi-Purpose-Lighter-Lighters/dp/B00GUQWAS8/ref=as_li_bk_tl/?tag=suespie-20&linkId=6b05139c15d5eae2436d3cb06d55c545&linkCode=ktl" id="amznPsBmLink_1082675" rel="nofollow" target="_blank">butane lighter</a><img alt="" border="0" height="0" id="amznPsBmPixel_1082675" src="https://ir-na.amazon-adsystem.com/e/ir?source=bk&t=suespie-20&bm-id=default&l=ktl&linkId=6b05139c15d5eae2436d3cb06d55c545&_cb=1438105259324" style="border: none; height: 0px; margin: 0px; padding: 0px; width: 0px;" width="0" /> (one of those multi-purpose deals) and a candle. Now light the candle with the lighter. Can you even imagine not being able to make one of those things work? I couldn't either. Until yesterday.
<br />
<br />
My hands are so weak right now that I have to use both of them to produce a flame. I need one hand to press the safety mechanism and the other to engage the trigger. Once the flame is rolling, I may or may not be able to connect the fire with the wick of the candle. This simple task used to require a thumb, a forefinger, and barely a thought.
<br />
<br />
Now imagine making a few of these can't-do discoveries every week for a year or more. The pain drains you of everything—will, muscle tone, positive attitude.
<br />
<br />
My luxurious bath towels are too heavy to hold, so I have to go back to old skimpy ones.
<br />
<br />
I get winded trying to roll over in bed. Sometimes I can't muster the energy to change position until long after my legs have started aching.
<br />
<br />
Do I get depressed sometimes? Fuck yeah, I do. You would too.
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<br />
<h3>
People with Chronic Pain Judging Other People with Chronic Pain</h3>
<div>
<br /></div>
Back to the movie though. At some point during the film when Claire was trying to get her hands on more opiates, Dan told the TV that Claire needed to at least <em>try.</em> I immediately came to this fictional character's defense. A few minutes later, though, and I was the one being dismissive of her struggle.
<br />
<br />
<em>Oh, well at least she's got physical scars and a clearly identifiable cause for her pain. </em><br />
<br />
"Why are we like that?" I asked Dan. "If anyone's going to be able to empathize with someone who has chronic pain, it's going to be someone else with chronic pain, right?"
<br />
<br />
It wasn't really about empathizing with a fictional character, though. I was expressing my frustration that her story wasn't exactly like my story. Because I want people to get <em>me</em>. I want my own validation. Screw Claire Bennett. Whoever she is.
<br />
<br />
No wonder people with addictions, chronic pain, and invisible illnesses become jaded with support groups. You have to go in with the understanding that even after sharing the most intimate details of your personal story once a week for months or years, not one other person will know what it's like to be you. And people who've never been to a support group in their life will ask helpfully, "Have you tried going to a support group?"
<br />
<br />
Wait a minute. Do I mean that in addition to losing a child, getting a divorce, paying bills, overcoming the constant pain and disabling results of the wreck, fighting drug addiction, taking a shower, and suppressing thoughts of suicide, Claire Bennett has to dig even deeper and figure out by herself how to manage her own expectations at group therapy?
<br />
<br />
Yep.
<br />
<br />
And the kicker? Group therapy, like the pool therapy that torments Claire, was probably required by her doctor. She has to prove to her prescribing physician (someone who probably only intellectually understands what chronic pain is) that she's deserving of a few meager moments of opioid-induced respite. How does she prove her worth? By SUFFERING.
<br />
<br />
Then she has to hide her addiction to said painkillers so people don't label her a pillhead and make it even harder for her to find relief.
Anyone still wondering why Claire squirreled away meds behind that painting in the hallway? <br />
<br />
Anyone still looking down on her for making Silvana drive her to Tijuana?
<br />
<br />
I don't take prescriptions for my chronic pain. But what if I need them someday? Is this what I have to look forward to?
<br />
<br />
<h3>
The End</h3>
<div>
<br /></div>
So eventually Claire decides to kick the painkillers, offers conciliatory vodka to her group therapy leader, and gives water therapy another go. She brings Nina's surviving child (Nina is the woman from group therapy whose suicide haunts Claire throughout the movie) a shark kite and a cake for his birthday. Then the movie ends with Claire finally sitting upright in the passenger seat of a moving vehicle, presumably for the first time since the car accident that killed her own son. If all of this gives you warm fuzzies and fills you with optimism for Claire's future, congratulations! You still have no idea what it's like to live with chronic pain.
<br />
<br />
Just because Claire's got her shit together now doesn't mean she'll have that luxury tomorrow. Perhaps the hardest part of living with chronic pain is having a few good days, and then having that progress ripped right out from underneath you without cause or explanation.<br />
<br />
<div style="text-align: center;">
<span style="color: #999999;">This post was originally published on my old blog on July 28, 2015.</span></div>
Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-49923369680283816062016-04-21T16:35:00.000-07:002016-04-21T16:53:07.950-07:00My Aunt Has Celiac, Do I?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">By <a class="new" href="https://commons.wikimedia.org/w/index.php?title=User:Bluemoose&action=edit&redlink=1" title="User:Bluemoose (page does not exist)">Bluemoose</a></td></tr>
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I've been thinking about and reading about <a href="http://www.chronicleigh.com/search/label/celiac">Celiac Disease</a> a lot in the last week as I attempt to find some relief from my <strike>eternal suffering</strike> chronic illness. <br />
<br />
I'm nearly a week in on my <a href="http://www.chronicleigh.com/search/label/gluten-free">gluten-free</a> diet, though on Day 2 I had already accidentally glutened myself. (Not all Reese's peanut butter cups are safe, in case you were wondering!)<br />
<br />
It's way too early to know if the diet is helping or if I'm just sliding out of my flare, but I do feel like a different person. My mood is improved, my bloating is decreased, and my constant headache is gone. I also feel like my gut is mobile again. <br />
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This is where I talk about my poop. I mean, someone's got to do it. <br />
<br />
I'm spending a lot of time in the bathroom every day now that I'm gluten-free, but I feel that's preferable to the past, where it wasn't uncommon for me to suffer three to five days of agonizing constipation followed by a single day of diarrhea. On-again, off-again was my pattern. It was horrendous, and the "bad" days made it impossible to leave the house. If you know what I'm sayin'.<br />
<br />
Anypoo, when I was talking to my mom today, I thought to ask her about my aunt's (her sister's) celiac diagnosis. Here's how that part of the conversation went.<br />
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<b>Me:</b> How old was Aunt C. when she was diagnosed with celiac?<br />
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<b>Mom:</b> 56. But she's fairly certain she had it for at least 20 years before her doctor ever thought to test her for it.<br />
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(Hmm. 56 – 20 = 36. I am 36.)<br />
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<b>Me:</b> With my last flare, I had new symptoms—skin rash and canker sores. So I'm going to bring it up in July at my next doctor's appointment. Everything seems to match up, plus it runs in families.
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<br />
<b>Mom:</b> Aunt C suffered from skin eruptions too.
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<br />
I know that I need to prepare myself for the possibility that celiac tests will come up negative like everything else in my life so far, but it's hard. I so desperately want real answers.<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-1567969084596246952016-04-20T06:00:00.000-07:002016-04-20T06:57:26.074-07:00Better Way Gluten Free Hamburger Bun ReviewDespite not having any confirmation of <a href="http://www.chronicleigh.com/2016/04/spoonie-validation-new-visible-sypmtoms.html">Celiac Disease</a> at this point, I've decided to go ahead with a gluten-free diet. There was just no way I could sit by and do nothing until my doctor's appointment in July. I mean, I have to work. I have to do something other than lie in bed at night, miserable, suffering, and wishing death would just take me.<br />
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Yesterday was Day 4, and my husband the cook and official grocery-getter picked up a few pantry items for me including <a href="http://amzn.to/1qXsyff" rel="nofollow" target="_blank">gluten-free Bisquick mix</a>, <a href="http://amzn.to/1qXt1ye" rel="nofollow" target="_blank">King Arthur gluten-free brownie mix</a>, and some Better Way gluten-free hamburger buns.<br />
<br />
I'll get to the other items eventually, but tonight was hamburger night, so I'll start with a little bun review. (Wink, wink. Hubba, hubba.)<br />
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<h3>
Better Way Gluten Free Hamburger Buns</h3>
Price: $6.89<br />
Count: 4<br />
Taste: 2/5<br />
Texture: 3.5/5<br />
<br />
<b>The Bad News</b><br />
While I complain about these buns, please bear in mind that I am only four days into my gluten-free diet. I still recall what lovely, glutened breads taste like. And in a side-by-side comparison, these don't come close.<br />
<br />
They don't have any real flavor to speak of. So they're not gross or anything, but they didn't enhance my homemade BLT burger. In fact, the tastelessness of these buns got in the way of the flavor of everything else in the burger. Also the texture wasn't typical of a hamburger bun (par for the course with gluten-free bakery products). They're soft when you poke 'em, but still a little tough when you try to bite or tear them.<br />
<b><br /></b>
<b>The Good News</b><br />
Here's the thing though—breads make eating food convenient. If you need something to make your greasy burger hand-holdable, these will do the trick without launching your body into a full-on autoimmune attack.<br />
<b><br /></b>
<b>The Verdict</b><br />
Personally, I'm likely to skip the buns and just wrap a burger in lettuce or dress it up and have at it with a knife and fork. At nearly $7 for just four of these hamburger buns, my bank account will be better off too.<br />
<br />
I was not compensated in any way for this review.Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-19707778776132678232016-04-19T06:00:00.000-07:002016-04-19T17:05:11.150-07:00Someone on the Internet Says Fibromyalgia is Fake<div class="separator" style="clear: both; text-align: center;">
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I belong to a couple of Facebook groups for people who, like me, have been diagnosed with <a href="http://www.chronicleigh.com/search/label/fibromyalgia">fibromyalgia</a>. Typically, I just lurk and glance at the conversations that pop up in my News Feed. Mostly I watch people talk about their symptoms, their struggles, their disability denials, their long list of doctors, their even longer list of prescriptions, and thank my lucky stars I'm getting by.
Today, though, one of our group members found this post somewhere else on Facebook, and shared it to the support group's page. Several were understandably <em>very</em> upset.<br />
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<br />
Personally, I don't see that there's much point in being upset by anonymous trolls on the internet. Many people in the support group routinely share how hard it is to get family and friends to see them as anything but lazy pill poppers. So no need to go looking for drama.
<br />
<br />
Still, I can't help but comment here on the blog. Not to feed the troll, but to sort out my own thoughts. Both for me, and for anyone who doesn't know what it's like to live with chronic pain but thinks it might be edifying to read a more reasoned response than the gems tucked away in Facebook comments. (Fibro sufferers on Facebook mostly resorted to things like wishing FibroTroll™ had fibromylagia or posting a picture of J.C. flipping the bird with the caption "Even Jesus thinks you're a cunt.")
<br />
<br />
So, yeah. People are really touchy about this subject.
<br />
<br />
Let me just do this line by line...
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<br />
<strong>Fibromyalgia is Latin for "seeking pain pills."</strong>
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<br />
Cute, but no. The word fibromyalgia is a catchy little word made by combining a few Latin roots: "fibro" (connective tissue fibers), "my" (muscle), "al" (pain), and "gia" (condition of). Some people who have been diagnosed with fibro take pain pills; some don't.
<br />
<br />
I occasionally take Tylenol or Exedrin Migraine if the pain disrupts my sleep or prevents me from getting shit done or the migraines make me feel like I'm stroking out. Though I don't need anything stronger, I don't judge anyone who does. I get that people who don't experience pain on a daily basis don't understand this dependency on dirty pills Nancy Reagan taught us to fear more than the devil himself. And it's totally acceptable for those people not to understand. I don't know what it's like to be someone else either. But there's no need for anyone to be an asshole about any of it.
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<strong>If you're not [seeking pain pills], you're misdiagnosed.</strong>
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<br />
Fibromyalgia was my diagnosis only after a laundry list of other diagnoses had been explored, including but not limited to: hypothyroidism, MS, CFS, lupus, rheumatoid arthritis, depression, lyme disease, IBS, RLS, sleep apnea, and blah, blah, blah.
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<br />
I have had hypothyroidism for more than a decade and was concurrently diagnosed with depression and fibromyalgia last fall. I may very well be misdiagnosed—it happens frequently enough with all kinds of syndromes and diseases and disorders—but until my doctor or the larger medical community comes up with better answers, fibromyalgia is all I have to work with.
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<strong>The symptoms are vague; tired and achy.</strong>
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<br />
Those might be the symptoms FibroTroll™ went to the doctor with, but I had a very specific list of symptoms that I talked to my doctor about. I tend to shorten this list a <em>lot</em> when talking to non-medical professionals for a few reasons: 1.) I don't want to rattle off the list repeatedly; it gets old 2.) I don't necessarily want to tell anyone face-to-face that some days I'm so inflexible wiping my ass is a struggle, and 3.) I can read body language and understand social cues.
I know when you don't give a shit.<br />
<br />
<strong>My doctor admitted it has always been a catch-all for undiagnosables.</strong>
<br />
<br />
And if you think FibroTroll™ is upset that no one has figured this stuff out yet, imagine how doctors and patients with the diagnosis must feel about it! I don't see anything wrong with the term fibromyalgia. The collection of symptoms related to fibromyalgia are common enough from patient to patient to merit them being grouped together and given a name. This one word makes my life a whole hell of a lot easier to talk about when I see a medical professional.
<br />
<br />
<strong>If there's one thing that singes my suction cups, it's people complaining about their fibro-frogging-myalgia.</strong>
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<br />
Seriously, the only people I've run into that are offended by my being honest about how I feel are people who want to project their own selfishness back at me. Generally, these are people who don't want you to ask them for help because they have more self-gratifying things to do and they don't want to feel guilty about doing them. These people, once identified, are quickly relieved of the chore of being part of my life.
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<br />
<strong>Seriously, if you are tired and hurty, there is another underlying reason and you need to find out what it is before it's too late.</strong>
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I don't know why I didn't think of this! I'm calling my doctor right now to schedule an appoi...oh wait. No wait, I know! I'm calling up my doctor first thing to ask him if he'll order a few dozen MORE tests, this time for all the things that fibromyalgia <em>doesn't </em>mimic. <br />
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<strong>What do you want others to do for fibromyalgia awareness? Play you a violin?</strong>
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Actually, no. Just understand that when people say they have fibromyalgia, they feel like shit. All you have to do after that is try not to be an asshole about it. You can even continue believing that people with fibromyalgia are making it all up if you want to—just keep it to yourself or start a Fibro Deniers support group or something.<br />
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<span style="color: #999999;">Originally published on my old blog on January 20, 2015</span></div>
Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-23872628503309412122016-04-18T06:02:00.000-07:002016-04-18T06:02:01.094-07:00Exercising with Fibromyalgia: It's Just Not That Simple<div class="separator" style="clear: both; text-align: center;">
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<br />
If you've been diagnosed with <a href="http://amzn.to/1Vc7XjZ">fibromyalgia</a>, chances are your doctor has told you that you need to exercise more. Hell, even your friends and family have probably wondered out loud why you don't get up and move around more.<br />
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Having been diagnosed myself, I can't figure out how it's okay for doctors to know next to nothing about fibromyalgia yet unequivocally proclaim that exercise is what you need. <br />
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Some doctors will even berate you for being honest about your inability to exercise. Because that's what every patient needs, right? A doctor who makes them feel worthless and undeserving.<br />
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I'm here to tell you that there are days I cannot move from the couch to the toilet. It's not about pushing through pain—I'm brilliant at that. It's that my fatigue gets so severe during a flare that I can't hold my head up on my own. My muscles have zero strength.<br />
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I learned the hard way that my body's signals were more important than my doctor's expectations. I went from walking and physical therapy exercises to stationary biking to rocking in a rocking chair in order to prove to my doctor that I wasn't lazy. But I did not build up endurance or feel better after exercising. <br />
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In fact, I felt exactly the opposite. And after three days in a row doing just ten minutes of the lowest exertion exercise I could manage, I would spiral into a horrible flare that lasted days or weeks. It's like I have a fixed amount of energy left for the rest of my life, and when I exercise I'm stealing from the future and SHORTENING MY LIFE!<br />
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I'm not telling you to ignore your doctor, of course. But I am telling you that people who don't get it think exercise and losing weight are the answer to everything. Many won't even acknowledge the possibility that your weight gain and immobility <i>followed</i> the onset of your chronic pain and other symptoms. <br />
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It sucks, and you are not alone.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-63770788035525237692016-04-17T05:22:00.000-07:002016-04-17T05:22:33.099-07:00The Fibromyalgia Pain Scale and My Celiac Suspicions<div class="separator" style="clear: both; text-align: center;">
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I don't know about you, but for me the numeric scale for fibromyalgia pain is exponential. Like the Richter scale for earthquakes. Even though going from an 8.5 to an 8.0 doesn't seem like much on paper, it can have a pretty dramatic impact on my actual life.<br />
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For instance, after days of barely being able to lumber to the bathroom at an 8.5 on the pain scale, yesterday I dropped to 8. That meant getting outside, doing a load of laundry, changing the sheets on my bed, and unloading the dishwasher.<br />
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Sure I'm paying the price this morning, but I was a semi-functioning member of society yesterday. That helps.<br />
<br />
The change was just enough to improve my mood and soothe my depression. One night I thought I was going to die or else suffer for the rest of my life. The next night I pondered how nice it would be when (not if) I lost 30 pounds and could stand to wear a bra and drive myself places.<br />
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***</div>
<br />
Yesterday I finally decided to bite the bullet and go gluten free. <a href="http://www.chronicleigh.com/2016/04/spoonie-validation-new-visible-sypmtoms.html">After a blistery looking rash and canker sores showed up with my most recent flare</a>, I can't shake the suspicion that I've got Celiac. I have an aunt who has it, and though she's not a first-degree relative, there are still studies that show a greater prevalence even among second-degree relatives.<br />
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At first I wanted to keep eating gluten. (You see, if you have Celiac and aren't eating gluten your test results may come up negative and you'll miss getting a real diagnosis.) But when I discovered I couldn't get in to see my gastroenterologist until July, doing nothing to try and end my flare didn't seem like an option.<br />
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So here I am, 24 hours gluten free. <br />
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I'll keep track of how things go. And if Celiac seems plausible, closer to July I can always do a <a href="http://celiacdisease.about.com/od/diagnosingceliacdisease/f/Gluten-Challenge.htm">gluten challenge</a> for a couple of weeks prior to my appointment.<br />
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<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-9306375512792624462016-04-15T04:30:00.000-07:002016-04-16T16:23:29.804-07:00Fibromyalgia 101: Tender Points<div class="separator" style="clear: both; text-align: center;">
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In my <a href="http://chronicleigh.blogspot.com/2016/04/spoonie-validation-new-visible-sypmtoms.html">last post</a>, I briefly mentioned my diagnosis and fibromyalgia tender points (also called trigger points). I thought I'd talk a little more about those for anyone new to the whole fibromyalgia thing.<br />
<br />
<b>What are tender points?</b>
<br />
<br />
Tender points are basically areas on the body that hurt like a son of a bitch when they are touched. When suspicious of fibro, doctors like to test the 18 different points on your body (see image.) God help you if you have this kind of sensitivity and your doctor jabs all your tender points with her bony fingers. You might want to take a bite stick to your appointment. These areas of pain are close to joints, but the pain source isn't actually in the joint.<b></b><br />
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<b>
What causes tender points?</b>
<br />
<br />
No one knows what causes them yet, and anyone that tries to tell you they know what causes them and how to fix them is most assuredly trying to sell you snake oil. Look to medical journals and actual doctors and medical researchers before you get too hopeful that any answers are available.<br />
<br />
When pain is mentioned, the first thing doctors look for is inflammation. But with fibromyalgia trigger points, inflammation isn't usually present. So helpful, right?<br />
<br />
Tender points seem to be pretty consistent from person to person with fibromyalgia. However, as a patient who hurts every-flippin'-where, I have serious questions about how this poking and prodding can lead to a diagnosis—especially when I hurt everywhere, not just at trigger points (see below).<br />
<br />
<b>Do doctors diagnose fibromyalgia from tender point pain?</b>
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<br />
Mine did. In an ideal world, I think they're supposed to look for other corroborating symptoms and verify that your pain has endured for something like three months. I also hear that they're supposed to check for other points (control points) to see if you scream for mercy when those are poked as well. My diagnosing doctor did not do this. So, your mileage may vary. <br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-3352822876905828742016-04-14T15:05:00.000-07:002016-04-21T12:28:46.971-07:00New Symptoms: Could It Be Celiac?<a href="https://4.bp.blogspot.com/-C8DlCJc9uNw/VxATqyHO6OI/AAAAAAAAAGo/1lyGIIRdIEodHzwy2ecv2Ehj0FCRunWrQCLcB/s1600/spoonie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="158" src="https://4.bp.blogspot.com/-C8DlCJc9uNw/VxATqyHO6OI/AAAAAAAAAGo/1lyGIIRdIEodHzwy2ecv2Ehj0FCRunWrQCLcB/s200/spoonie.jpg" width="200" /></a>Canker sores on the inside of my cheeks and on my gums? Check.<br />
<br />
Weird, itchy rash on the back of my hands? Check.<br />
<br />
Petechiae on my arms and legs? Check.<br />
<br />
In this week's installment of Guess What the Hell is Wrong with Chronic Leigh, I contemplate the probability that I have undiagnosed Celiac or Crohn's...or, you know, anything in the IBD family. (PSA: Don't take your normal bowel movements for granted, people. Not ever.)<br />
<br />
My current symptoms, so I don't forget them:<br />
<ul>
<li>All-over nerve pain</li>
<li>Extreme muscle weakness/fatigue</li>
<li>Headaches</li>
<li>Rash</li>
<li>Canker sores</li>
<li>Petechiae</li>
<li>Diarrhea</li>
<li>Consitpation (yes, both)</li>
<li>Vitamin D deficiency</li>
<li>Gait and balance problems</li>
<li>Dizziness</li>
<li>Hypothyroidism (previously managed with meds, but suddenly and unexpectedly off the charts TSH results)</li>
<li>Bloating</li>
<li>Dry eyes and mouth</li>
<li>Swelling of hands and feet</li>
<li>Hiccups</li>
<li>GERD (currently treated with Nexium)</li>
</ul>
I am relieved to have some visible symptoms on that list. Sadly though, I can't see a GI specialist until July 11! So, ever the resourceful <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/" target="_blank">Spoonie</a>, I took pictures of my canker sores and my blistery rash to show my doctor. My hope is that he will consider one of the following possibilities:<br />
<ol>
<li>I don't have <a href="http://chronicleigh.blogspot.com/search/label/fibromyalgia">fibromyalgia</a> at all.</li>
<li>I do have fibromyalgia, but there is something else going on.</li>
</ol>
As I go on two years of almost constant physical decline, I can't shake the feeling that I'm wandering through life with an undiagnosed illness. And since it's not diagnosed, it's not being treated.<br />
<br />
One of the many, many shitty things about suffering from chronic pain and invisible illnesses is that people doubt you so frequently you begin to doubt yourself. For example, when I complained that I hurt all the time, my first doctor said I was depressed and had fibromyalgia. <br />
<br />
He did that tender points test and diagnosed me with fibro when all those spots on my body hurt. Looking back at that I'm like, dude, you could have touched me <i>anywhere</i> and I'd have cried out in pain. The fact that you selected those 18 points on my body means absolutely nothing. Pick 18 more; those hurt too.<br />
<br />
But back to my main point. When my rashes and sores popped up during a severe flare last week, I was elated. Visible symptoms are validation. <br />
<br />
I am not making this up.<br />
<br />
I am not just lazy.<br />
<br />
I am not just looking for attention.<br />
<br />
I AM LOOKING FOR A DIAGNOSIS. (Some sound medical advice on how to navigate whatever is happening would be great too.)<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com2tag:blogger.com,1999:blog-7674014533130084476.post-75174891895922698682016-04-10T03:34:00.000-07:002016-04-10T06:02:44.553-07:00Pain Level: FML<div style="text-align: center;">
<span style="color: #cccccc;">Originally published on my old blog on November 8, 2015.</span></div>
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This morning as I was using the towel bar to lower myself onto the toilet, I had a thought. <em>What if this towel bar gives out?</em>
<br />
<br />
Every inch of me is screaming with pain. I can hardly move, and I'm reduced to asking my husband for help with the most absurd things. "Hey, if I put the chicken patties in the toaster oven, will you assemble the sandwiches?"
<br />
<br />
When things get this bad, I can't help but try to identify a reason for my suffering. I let myself get cold yesterday, sitting outside while my husband did some yard cleanup. Maybe my muscles don't like the cold. I had an alcoholic beverage three days ago, maybe it's taking this long to give me a hangover? My food diary shows I haven't taken a diclofenac in a week, maybe I've got some inflammation that's raging out of control (even though none of my numerous medical test results point to a problem with inflammation). I started having two cups of coffee a day. Maybe the coffee creamer I use is poisoning me.
<br />
<br />
It's hard to accept what's more likely true—that nothing I'm doing is causing the pain and nothing I can do will make it go away.
<br />
<br />
That's why I wish people would stop fucking asking me if I've tried going vegan, or cutting out carbs, or eating only organic, or exercising more. In the past 18 months, I've tried everything, okay? I don't want to feel like this, and I certainly don't enjoy every little aspect of my life being scrutinized like I somehow brought this upon myself.
<br />
<br />
Besides, if a random alcoholic treat or piece of candy with Yellow #5 in it or a processed chicken breast was so dangerous, the entire fucking world would be ending. Your garbage men would have to quit their jobs because the noise from the truck's compactor would make them puke. The people stocking the shelves at your local grocer would be fired because they couldn't lift a 12 oz. can of beans above their belly buttons.
<br />
<br />
What really gets in my craw are healthy people admonishing people with illnesses over their dietary choices. "Oh, I went 100% gluten free and I feel so much better. You're not doing yourself any favors by eating that PB&J."<br />
<br />
In my mind I'm like, <em>Let me get this straight, your perfectly healthy self went gluten free and now you feel </em>even better<em>?</em>
<em></em><br />
<em><br /></em>
<em>Go die in a tire fire, asshole.</em>
<br />
<br />
This kind of exchange with people has been bothering me for a while. I've just been absorbing the rage and convincing myself that people who do this "mean well." But today I'm like, why is it that I'm always the one who has to assume the best of Person B in these situations?
<br />
<br />
See, I have always been terribly hard on myself, so the first thing that ever came to my mind when my health started deteriorating was that I was doing some horrible thing to myself. When someone comes along and asks these "helpful" diet and exercise questions, it's insulting.
<br />
<br />
Whatever's wrong with me just <em>is.</em><br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-13414228389077717452016-04-09T12:27:00.003-07:002016-04-16T08:44:37.034-07:00Take My House, Please!<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-7tBE5Sgvhmc/VwlW7cOrl4I/AAAAAAAAAGI/xTnhK8hSnyAkqNGjbRaaS7MSe44dhe8UA/s1600/house.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://2.bp.blogspot.com/-7tBE5Sgvhmc/VwlW7cOrl4I/AAAAAAAAAGI/xTnhK8hSnyAkqNGjbRaaS7MSe44dhe8UA/s200/house.jpg" width="200" /></a></div>
So, I'm boob deep in the middle of a <a href="http://chronicleigh.blogspot.com/search/label/fibromyalgia">fibromyalgia</a> flare that's been building for about two weeks when I get some horrible news. <br />
<br />
Things are still a little too raw for me to spell them out in great detail here, so let's just say that my financial stress was compounded by an exponent of about ten with a series of emails I received between me, my general contractor, and my Realtor regarding a home I've been trying to sell for going on three years.<br />
<br />
Yeah, three years.<br />
<br />
I got a new job in a new state in 2013, and have not been able to sell my old house yet. There's a certain level of stress that comes part and parcel with that sort of predicament (as well as a shit-ton of debt). It is not, I assure you, a stress that comes and goes. I have two mortgages and one income every day until that piece of crap sells. The weight of that burden is ever present.<br />
<br />
Honestly, there have been many times since my <a href="http://blog.emilysuess.com/fibromyalgia-discrimination/">fibromyalgia diagnosis</a> when I have wondered if this stress is the root cause of my fibromyalgia. <i>What if I could just sell that property? Could I be normal again?</i><br />
<i><br /></i>
It's kind of a dangerous question to ask. Because when the house is no longer my responsibility and I'm still fighting the pain and malaise every day of my life, it'll be that much harder to scrounge up some hope.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-29118386858600576952016-04-06T08:04:00.000-07:002016-04-06T08:05:18.702-07:00Today is Migraine Day—Yippee!<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-gvgGNbr3I4w/VwUliMlaQxI/AAAAAAAAAEE/AbyTAQRrYJURMB8bU1_X6o8FytSv6qwRw/s1600/ocualr-migraine.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="130" src="https://2.bp.blogspot.com/-gvgGNbr3I4w/VwUliMlaQxI/AAAAAAAAAEE/AbyTAQRrYJURMB8bU1_X6o8FytSv6qwRw/s200/ocualr-migraine.png" width="200" /></a></div>
As they say on the local news here in Central Illinois, "There's going to be some weather today."<br />
<br />
The idea that weather only happens when whether is bad? Well, that's odd to me. Isn't there weather <i>every</i> day? When my husband and I moved here and first heard meteorologists talk like this, I scratched my head. It's been grating on my over-sensitive nerves for about three years now.<br />
<br />
It's weird, right? It's not just me? Sunshine, poofy white clouds, blue skies—that's all weather too!<br />
<br />
But sunshine eludes me today. A cold front is moving in, the sky is dark. And that brings me to the whole point of this post: rain and storms are my migraine triggers and good lawd, I am feeling it.<br />
<br />
A migraine for me involves splitting pain above my eyes and across the lower back of my head from ear to ear. The pain radiates until my whole head and face throb, and then I start seeing the dreaded squiggle in my field of vision. Next, one of my arms will go numb for a while.<br />
<br />
So that's what I'll be doing today. What are your plans?<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-54616047368391362612016-03-17T16:41:00.000-07:002016-04-16T08:44:19.917-07:00Resolving Interpersonal Issues at Work — While Sick<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-85xkBJ7h9uE/VwRMqB3ZI9I/AAAAAAAAAC4/RqHequeaLkAxRE4v33_DN8dI4RD48f7RA/s1600/frustration.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="160" src="https://4.bp.blogspot.com/-85xkBJ7h9uE/VwRMqB3ZI9I/AAAAAAAAAC4/RqHequeaLkAxRE4v33_DN8dI4RD48f7RA/s200/frustration.jpg" width="200" /></a></div>
When I was healthy, dealing with difficult people and suffering through workplace problems was a minor inconvenience. Now that I have fibromyalgia, the stress gets magnified by like a bajillion and can easily send me into a debilitating flare.<br />
<br />
Work started out rough today. The past week or so was filled with needless wheel spinning that had me on the brink of issuing an ultimatum to my boss along the lines of "either you give all that colleague's projects to someone else, or I'm out."<br />
<br />
Yeah, it was that bad. I otherwise love my job.<br />
<br />
I was justifiably about to lose my mind over the whole flipping thing today, even though I knew and understood the circumstances that made it difficult for my co-worker. (He's still kind of new to the team and a little uncertain about what he's expected to know and what he's not expected to know. We've all been there.)<br />
<br />
The simple resolution involved him reaching out to his manager and scheduling a meeting. But he was reluctant to "bother" his boss. Reluctant like a kid grabbing the door frame and screaming while you try to push him through the classroom door. <br />
<br />
I was completely out of ways to convince him that the thing couldn't proceed unless he put on his big boy panties.<br />
<br />
Things did eventually get sorted, he set the necessary meeting with his boss, and his boss was perfectly pleasant. But this resolution came only after the colleague had insulted me for "not bringing this to his attention earlier" and cutting me off when I attempted to remind him that I <i>had</i> brought it to his attention already. <br />
<br />
"Well, I did bring this..." I started. It was not an apology nor an admission of guilt. But he totally took it that way because it suited him to.<br />
<br />
"Oh, well. It's okay. We'll just push forward from here for now."<br />
<br />
Though I didn't get an apology from the actual source of my frustration, my boss did apologize after the final meeting, acknowledging that it had taken a little too long to get me what I needed. (A couple of days in, I had to ask for her assistance to get the issue sorted.)<br />
<br />
So I'm putting the frustration behind me now and focusing on how good it feels to have a clear path forward. But damn.Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-61288808731366684142016-03-11T03:00:00.000-08:002016-04-15T15:02:22.774-07:005 Tips for Dealing with People Who Don't Believe Your Chronic Pain is Real<div>
This might seem a little dark. It's supposed to. If you'd like to add your own tip, please do so in the comments. But let's all please remember to have a little fun with this and be as snarky as humanly possible.</div>
<ol>
<li>Tell them to fuck off.</li>
<li>Hit them with a sack of oranges. Then, before they have a chance to bruise, remind them that they look fine.</li>
<li>Tell them you'd love to continue chatting, but you've got another chapter to write in your self-help book, <i>How to Fake Hurting and Live the Life You Always Wanted.</i></li>
<li><i></i>Hug and touch them repeatedly while reminding them not to worry because you're not contagious.</li>
<li>Start writing. Then mumble, "I knew there was someone I forgot to take off the will."</li>
</ol>
Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-19000867851857670122016-02-29T09:31:00.000-08:002016-04-15T15:02:07.367-07:00My Reasonable and Unreasonable AnxietyFor whatever reason, I'm prone to feelings of intense anxiety these days. I lump anxious feelings into two basic categories: Reasonable and Unreasonable. Let me give you a couple of examples. That's probably the simplest way to explain.<br />
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<a href="https://3.bp.blogspot.com/-b3bPr3SI57w/VwMLGwGGbfI/AAAAAAAAACo/s8saibz2qocaovf1S2qYNbbLdpWIrty1w/s1600/anxiety-girl.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="106" src="https://3.bp.blogspot.com/-b3bPr3SI57w/VwMLGwGGbfI/AAAAAAAAACo/s8saibz2qocaovf1S2qYNbbLdpWIrty1w/s320/anxiety-girl.jpg" width="320" /></a></div>
<a href="https://3.bp.blogspot.com/-b3bPr3SI57w/VwMLGwGGbfI/AAAAAAAAACo/s8saibz2qocaovf1S2qYNbbLdpWIrty1w/s1600/anxiety-girl.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><br />
<b>Reasonable Anxiety:</b> I am sick, but responsible to a fault. So when people start dumping projects on me at work because our department is short staffed or someone else has just given up, I get a little crazy. I start wondering if they'll ever take me seriously when I tell them I am swamped or if they'll just keep pushing me until I break. My weekends feel like they are shrinking. Forty-eight hours isn't enough time to recover from the week before. I keep my eyes out for other jobs, then worry about starting over.<br />
<br />
<b>Unreasonable Anxiety:</b> I'm in public, there are things there, and I think I might die.Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0tag:blogger.com,1999:blog-7674014533130084476.post-29541082643094753262016-02-12T18:41:00.000-08:002016-04-15T15:01:48.576-07:00Am I a Chronic Target?When I'm feeling particularly down about life, its past unpleasantries always bubble up to the surface of my brain. Like right now I'm thinking about that one time my brother saw my chronic illness as an opportunity to sell me nutrition supplements and convert me to veganism. <br />
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<a href="http://3.bp.blogspot.com/-9OdeXkFZrtk/VwMDe5mqPII/AAAAAAAAACU/LlY48LfVI-wXYQKiXx1TbNotFWoLtCZ0w/s1600/no%2Bsoliciting%2Bsign.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://3.bp.blogspot.com/-9OdeXkFZrtk/VwMDe5mqPII/AAAAAAAAACU/LlY48LfVI-wXYQKiXx1TbNotFWoLtCZ0w/s200/no%2Bsoliciting%2Bsign.jpg" width="190" /></a></div>
You see, he's healthy (except for that whole alcoholism thing, but whatever) and only eats a plant-based diet. So logically, I must be sick because I don't eat or live like he does. If I'd just spend hundreds of dollars on his magical pyramid scheme powder, I too could be bony as all get out and post pictures of asparagus and beets to my Instagram account twice a day!<br />
<br />
Fortunately for me, my brother's M.O. is to completely stop doing anything that doesn't come easily. So when I told him I'd look into his magic powder if he'd send me some info, I was 99% confident he wouldn't bring it up again. And? So far, so good. It was five months ago today he said he'd send me a couple of links.<br />
<br />
But my brother isn't the only one who's tried to profit from my poor health. A friend and fellow chronic who sells Avon-like substances from home (and knows that money is extremely tight for me) tried to sell me the newest flavor of hand lotion last week when I complained to a small selection of people on Facebook about weird bumps forming on the back of my hands. Many people assured me they get the same rash and are fine, but it was the subtle sales pitch that caused me to delete the post and abandon my Facebook account.<br />
<br />
I literally have no one to tell my troubles too. People that don't get it just don't get it. And people who do get it -- friends in similar situations and support-group types -- make me feel worse about myself.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16045508072767490212noreply@blogger.com0