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<channel><title><![CDATA[Bonnieworks: Art, Photography, Midwifery, and the Natural World - Living Better with Ehlers Danlos Syndrome]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos]]></link><description><![CDATA[Living Better with Ehlers Danlos Syndrome]]></description><pubDate>Mon, 13 Apr 2026 02:47:38 -0400</pubDate><generator>Weebly</generator><item><title><![CDATA[To climb an (actual and metaphoric) mountain]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/to-climb-an-actual-and-metaphoric-mountain]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/to-climb-an-actual-and-metaphoric-mountain#comments]]></comments><pubDate>Mon, 30 May 2022 15:40:15 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/to-climb-an-actual-and-metaphoric-mountain</guid><description><![CDATA[ 	 		 			 				 					 						   &#8203;I set a goal for myself. An unimaginably audacious goal. In fact, before this year, any goal requiring fitness, strength, and endurance was undeniably out of my reach. Or so I thought.&nbsp;In August, 2023, for my 60th birthday, I will climb Mount Washington.The pinnacle of New Hampshire&rsquo;s White Mountain range, Mount Washington isn&rsquo;t a huge mountain compared to the snow-capped peaks of the Rockies. The summit is only 6,288 feet above sea level. It [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"> 	<table class="wsite-multicol-table"> 		<tbody class="wsite-multicol-tbody"> 			<tr class="wsite-multicol-tr"> 				<td class="wsite-multicol-col" style="width:85.214007782101%; padding:0 15px;"> 					 						  <span class='imgPusher' style='float:left;height:0px'></span><span style='display: table;width:187px;position:relative;float:left;max-width:100%;;clear:left;margin-top:2px;*margin-top:4px'><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/20210623-103453.jpeg?1653990968" style="margin-top: 10px; margin-bottom: 10px; margin-left: 0px; margin-right: 10px; border-width:0; max-width:100%" alt="Picture" class="galleryImageBorder wsite-image" /></a><span style="display: table-caption; caption-side: bottom; font-size: 90%; margin-top: -10px; margin-bottom: 10px; text-align: center;" class="wsite-caption"></span></span> <div class="paragraph" style="display:block;">&#8203;I set a goal for myself. An unimaginably audacious goal. In fact, before this year, any goal requiring fitness, strength, and endurance was undeniably out of my reach. Or so I thought.&nbsp;In August, 2023, for my 60th birthday, I will climb Mount Washington.<br /><br />The pinnacle of New Hampshire&rsquo;s White Mountain range, Mount Washington isn&rsquo;t a huge mountain compared to the snow-capped peaks of the Rockies. The summit is only 6,288 feet above sea level. It is, however, a challenging and potentially dangerous hike. Mt Washington is notorious for having some of the worst and most changeable weather in the world. It is never more than 72&deg;F at the summit and even in summer the temperature can plummet to below freezing with hurricane-strength winds. It is a strenuous, steep hike that usually takes 8-12 hours to accomplish. Fortunately, I will be in good company; my husband Alex, an experienced hiker who has climbed Mt Washington, even in winter, will be my Sherpa, and his trail-savvy daughter Ginny will accompany us. &nbsp;&nbsp;<br /><br />I have been to the summit of Mount Washington several times, by auto road or Cog Railway. I have braced against snow-laden windy blasts in June, with lacy fingers of frost crunching beneath my boots. If I tried to hike Mount Washington today, I would not be able to endure more than an hour or two on its arduous slopes. But I have set a goal that is just inside the realm of the possible. By the time I turn 60, I will be the product of rigorous strength and cardiovascular training. I will have progressed from short hikes of moderate intensity to long, strenuous excursions carrying a heavy pack. Ill be ready. I know I will. &nbsp;<br /><br />Fitness is its own reward. In the 3 months I have been committed to weight training and cardiovascular fitness, I have gained strength, endurance, confidence, and a greater feeling of emotional wellbeing. It is always not fun to muscle though a workout, but afterwards I feel strong, proud, and accomplished. But I need a tangible goal. My goals of bigger and stronger muscles, greater endurance, and a healthier, more beautiful body are not quantifiable. Just how large does a muscle need to get for me to consider it bigger and stronger? How do I measure endurance?<br /><br />For decades, I have enjoyed challenging myself by picking a goal that seems almost impossible and finding a way to accomplish it. When I was a single-mother EMT attending community college, I moved away from my family and friends to study nursing, and ultimately achieved a Masters Degree in&nbsp; from an Ivy League University. I always wanted to write a book- to date I have written 14, one of which has become a birth emergency skills training workshop for midwives. &nbsp;I like challenging myself. I like doing difficult things. I love expanding myself, growing, learning.<br />&#8203;<br />So I dropped a pin on the map of fitness training, &nbsp;and will be orienting my path towards the imposing slopes of Mount Washington. Follow my journey. It&rsquo;s gonna be fun.&nbsp;</div> <hr style="width:100%;clear:both;visibility:hidden;"></hr>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0px;margin-right:0px;text-align:center"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/untitled-839_orig.jpg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>   					 				</td>				<td class="wsite-multicol-col" style="width:14.785992217899%; padding:0 15px;"> 					 						  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:right"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/editor/untitled-81s7.jpg?1653925922" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:right"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/20210623-103459_orig.jpeg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:right"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/untitled-836_orig.jpg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:right"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/untitled-835s_orig.jpg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:right"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/untitled-837_orig.jpg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div class="wsite-adsense">               </div>  <div class="wsite-adsense">               </div>   					 				</td>			</tr> 		</tbody> 	</table> </div></div></div>]]></content:encoded></item><item><title><![CDATA[Three Month Milestone]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/three-month-milestone]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/three-month-milestone#comments]]></comments><pubDate>Mon, 30 May 2022 14:50:56 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/three-month-milestone</guid><description><![CDATA[ 	 		 			 				 					 						   What would you do if your doctor told you that you must become a body builder? What if your doctor locked his eyes on yours and said &ldquo;If you do not engage in a rigorous program of strength straining and cardiovascular conditioning, your arms will begin to randomly fall out of the sockets, you will no longer be able to work as a nurse-midwife, and your husband will have to wipe your butt?&rdquo; I have Ehlers Danlos Syndrome, just like my sister, whose shoulder [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"> 	<table class="wsite-multicol-table"> 		<tbody class="wsite-multicol-tbody"> 			<tr class="wsite-multicol-tr"> 				<td class="wsite-multicol-col" style="width:71.243523316062%; padding:0 15px;"> 					 						  <span class='imgPusher' style='float:left;height:0px'></span><span style='display: table;width:279px;position:relative;float:left;max-width:100%;;clear:left;margin-top:0px;*margin-top:0px'><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/20220520-131506.jpg?1653922866" style="margin-top: 5px; margin-bottom: 10px; margin-left: 0px; margin-right: 10px; border-width:1px;padding:3px; max-width:100%" alt="Picture" class="galleryImageBorder wsite-image" /></a><span style="display: table-caption; caption-side: bottom; font-size: 90%; margin-top: -10px; margin-bottom: 10px; text-align: center;" class="wsite-caption"></span></span> <div class="paragraph" style="display:block;">What would you do if your doctor told you that you must become a body builder? What if your doctor locked his eyes on yours and said &ldquo;If you do not engage in a rigorous program of strength straining and cardiovascular conditioning, your arms will begin to randomly fall out of the sockets, you will no longer be able to work as a nurse-midwife, and your husband will have to wipe your butt?&rdquo; I have Ehlers Danlos Syndrome, just like my sister, whose shoulder would dislocate when someone gave her a &ldquo;high five&rdquo;. Dr Lavallee also has Ehlers Danlos, and knows the score. &ldquo;I have treated thousands of patients just like you. I have seen the outcomes. If you start a serious workout program, you can probably continue to do all of the things that matter to you for a very long time."<br />&#8203;<br />That was 3 months ago. I joined the Y, hired a trainer, and never looked back. I have been astonished by my progress. My arm circumference is larger, and I am noticing the beginnings of muscles. My endurance is much greater. My heart does not pound as hard when I exercise. Moreover my mood is calmer and my creative energy is high. I walk taller and with greater confidence. I am considerably stronger on the circuit training machines. Recovering from a frozen shoulder, when I joined the Y in March I couldn&rsquo;t even maneuver my injured arm into most of the arm machines. Now I can use them all and am steadily progressing on weight.<br /><br />My schedule is not fixed, because I work irregular 24 hr shifts at work. I do something every day. On a leg day I do 30-60 min on the elliptical, all of the circuit training leg machines, back and torso machines, and finish with a stationary bike. On an arm day I usually row for 20-30 min, then do all the arm and ab machines, then some dead lifts, bar presses, bar curls, etc. When I train with Tammy, she teaches me lifts with low or no weight to focus on technique, then we increase the weight.&nbsp; If I have down time at work I do a yoga tape on my phone or use the stationary bike. I try to hike once a week. &nbsp;Occasionally I swim. At home I can row, lift little barbells, use the exercise ball, work with the horses, Bowflex, hula hoop, or do cardio on the Wii.<br />&#8203;<br />I am three months in and fitness is now a way of life. I&rsquo;m learning about nutrition and target heartrates. My trainer Tammy helps me to optimize my workout for muscle hypertrophy- large muscles are necessary to stabilize my joints. I don&rsquo;t always love the actual workout, but afterwards I feel strong, accomplished, and happy. I&rsquo;m looking forward to the strength I will have next year, and the beautiful changes in my body. But fitness is not so much about what I will have down the road as what I can do today, and today, and today. And today, I soldier on.&nbsp;</div> <hr style="width:100%;clear:both;visibility:hidden;"></hr>  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/20220520-131518.jpg?1653923661" alt="Picture" style="width:155;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>   					 				</td>				<td class="wsite-multicol-col" style="width:28.756476683938%; padding:0 15px;"> 					 						  <div class="wsite-video"><div title="Video: 20220518_092403_1_243.mp4" class="wsite-video-wrapper wsite-video-height-282 wsite-video-align-left"> 					<div id="wsite-video-container-795914089412177604" class="wsite-video-container" style="margin: 10px 0 10px 0;"> 						<iframe allowtransparency="true" allowfullscreen="true" frameborder="0" scrolling="no" id="video-iframe-795914089412177604" 							src="about:blank"> 						</iframe> 						 						<style> 							#wsite-video-container-795914089412177604{ 								background: url(//www.weebly.com/uploads/b/119677144-947782575326308797/20220518_092403_1_243.jpg); 							}  							#video-iframe-795914089412177604{ 								background: url(//cdn2.editmysite.com/images/util/videojs/play-icon.png?1653689076); 							}  							#wsite-video-container-795914089412177604, #video-iframe-795914089412177604{ 								background-repeat: no-repeat; 								background-position:center; 							}  							@media only screen and (-webkit-min-device-pixel-ratio: 2), 								only screen and (        min-device-pixel-ratio: 2), 								only screen and (                min-resolution: 192dpi), 								only screen and (                min-resolution: 2dppx) { 									#video-iframe-795914089412177604{ 										background: url(//cdn2.editmysite.com/images/util/videojs/@2x/play-icon.png?1653689076); 										background-repeat: no-repeat; 										background-position:center; 										background-size: 70px 70px; 									} 							} 						</style> 					</div> 				</div></div>  <div class="wsite-video"><div title="Video: 20220518_093229_806.mp4" class="wsite-video-wrapper wsite-video-height-282 wsite-video-align-left"> 					<div id="wsite-video-container-117734232854991113" class="wsite-video-container" style="margin: 10px 0 10px 0;"> 						<iframe allowtransparency="true" allowfullscreen="true" frameborder="0" scrolling="no" id="video-iframe-117734232854991113" 							src="about:blank"> 						</iframe> 						 						<style> 							#wsite-video-container-117734232854991113{ 								background: url(//www.weebly.com/uploads/b/119677144-947782575326308797/20220518_093229_806.jpg); 							}  							#video-iframe-117734232854991113{ 								background: url(//cdn2.editmysite.com/images/util/videojs/play-icon.png?1653689076); 							}  							#wsite-video-container-117734232854991113, #video-iframe-117734232854991113{ 								background-repeat: no-repeat; 								background-position:center; 							}  							@media only screen and (-webkit-min-device-pixel-ratio: 2), 								only screen and (        min-device-pixel-ratio: 2), 								only screen and (                min-resolution: 192dpi), 								only screen and (                min-resolution: 2dppx) { 									#video-iframe-117734232854991113{ 										background: url(//cdn2.editmysite.com/images/util/videojs/@2x/play-icon.png?1653689076); 										background-repeat: no-repeat; 										background-position:center; 										background-size: 70px 70px; 									} 							} 						</style> 					</div> 				</div></div>   					 				</td>			</tr> 		</tbody> 	</table> </div></div></div>]]></content:encoded></item><item><title><![CDATA[Choose your physical therapist wisely]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/choose-your-physical-therapist-wisely]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/choose-your-physical-therapist-wisely#comments]]></comments><pubDate>Wed, 30 Mar 2022 09:06:13 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/choose-your-physical-therapist-wisely</guid><description><![CDATA[After 5 consecutive months in physical therapy (and 7 months of the past year in PT), I am finally graduating! The issues that prompted the referrals were related to my Ehlers Danlos Syndrome diagnosis. First the subluxations (slipping) of my sacroiliac joints worsened until I was having nerve pain down my legs when I sat for any length of time. Then I developed tendonitis in my right shoulder that progressed to partial rotator cuff tears and a frozen shoulder.&nbsp; Today, after months of PT an [...] ]]></description><content:encoded><![CDATA[<div class="paragraph">After 5 consecutive months in physical therapy (and 7 months of the past year in PT), I am finally graduating! The issues that prompted the referrals were related to my Ehlers Danlos Syndrome diagnosis. First the subluxations (slipping) of my sacroiliac joints worsened until I was having nerve pain down my legs when I sat for any length of time. Then I developed tendonitis in my right shoulder that progressed to partial rotator cuff tears and a frozen shoulder.&nbsp; Today, after months of PT and a month of rigorous daily workout routines, I feel stronger than ever before in my life and ready to achieve a higher degree of fitness.&nbsp;<br><br>Not all physical therapy providers are equal. Initially, when my symptoms became problematic enough to necessitate PT, I chose a practice for the sole reason that they offered hydrotherapy in a 90-degree pool. Hydrotherapy is low-impact and very beneficial to the person with EDS, and the PTA who administered my therapy was engaging and fun. Hydrotherapy feels wonderful and I looked forward to my sessions. However, in two months of biweekly therapy, I saw the actual physical therapist exactly twice. Upon my initial evaluation, he gave me 4 home exercises that never changed through the 2 months that they treated my shoulder. My injury progressed from tendonitis to two partial-thickness tears and a frozen shoulder. I had to stop working due to pain and disability. Ultimately, the care provided by this practice yielded no benefit.&nbsp;<br>&nbsp;<br>&#8203;Dismayed by my diagnosis and frustrated by my lack of progress, I returned to Neff Physical Therapy in Quarryville, PA. I had been a client of Neff PT a few years earlier to treat subluxations of my left shoulder, which quickly resolved under their management. &nbsp;This time I arrived in sorry shape in the dark, dark days of January. I was in tremendous pain and the slightest rotation of my forearm sent paroxysms of agony though the inflamed shoulder.&nbsp; I couldn't sleep, couldn't put on a sweatshirt, and couldn't put my hand on my head or on the opposite shoulder. I was anxious and miserable, frustrated about my inability to work, and terrified at the possibility that the shoulder would require surgical intervention. People with EDS do not heal well from surgery, and sometimes surgical repair involves trading one problem for another.<br><br>Neff&rsquo;s approach to physical therapy involves manipulating the joint to restore its normal anatomical position and movement, then working through an ever-expanding regimen of strengthening exercises to maintain that alignment. &nbsp;I saw the same physical therapist, Dr Davis, at every appointment, and worked with the same PTA, Dillon, who put me though my paces each time, modifying exercises as my strength and ability improved.<br><br>With each visit, Dr Davis listened carefully to my self-assessment, answered questions, performed manual therapy that restored normal alignment, and prescribed exercises that helped me continually gain strength and improve functionality. &nbsp;While my shoulder injury was my presenting problem, Dr Davis saw me holistically. He worked on the spasms and restrictions that prevented my neck from moving normally. My sacroiliac joint suffered frequent subluxations and he used manual therapy to correct abnormal rotation of my sacrum. On a typical visit, I would undergo 10-15 minutes of manual therapy and perform 45 minutes of stretching and strengthening. Under their care, I made steady progress.<br><br>Today, after 5 continuous months of physical therapy and a month of daily workouts, I feel strong. I still have months of stretching and strengthening ahead of me to recover my previous range of motion. But I feel strong and vibrant, ready to build my future self though hard work and clean sweat.<br><br>&nbsp;As a person with EDS, it is almost inevitable that I will require physical therapy in the future. Now that I have adopted a lifestyle that emphasizes daily fitness training, I hope that my future breakdowns and subluxations will be infrequent in timing and minor in degree. But it has become clear to me that some physical therapy providers are much more effective than others. I am grateful to Neff PT for restoring the functionality of my arm and pointing me towards a lifetime of better health.&nbsp;<br><br><br><br></div><div><div class="wsite-image wsite-image-border-none" style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/277664138-10229757000216117-1099626098687983194-n.jpg?1648633175" alt="Picture" style="width:156;max-width:100%"></a><div style="display:block;font-size:90%"></div></div></div><div><div id="529687024743922284" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml">Share button <!-- AddToAny BEGIN --><div class="a2a_kit a2a_kit_size_32 a2a_default_style"><a class="a2a_dd" href="https://www.addtoany.com/share"></a> <a class="a2a_button_facebook"></a> <a class="a2a_button_twitter"></a> <a class="a2a_button_email"></a></div> <!-- AddToAny END --></div></div><div class="wsite-spacer" style="height:12px;"></div><div style="text-align:left;"><div style="height:10px;overflow:hidden"></div><span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-instagram' href='https://www.instagram.com/howwedidthat/' target='_blank' alt='Instagram' aria-label='Instagram'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-linkedin' href='https://www.bonnieworks.com//%20https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-mail' href='mailto:social@howwedidthat.com' target='_blank' alt='Mail' aria-label='Mail'><span class='wsite-social-item-inner'></span></a></span><div style="height:10px;overflow:hidden"></div></div>]]></content:encoded></item><item><title><![CDATA[Point and shoot fitness]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/point-and-shoot-fitness]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/point-and-shoot-fitness#comments]]></comments><pubDate>Tue, 29 Mar 2022 10:06:50 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/point-and-shoot-fitness</guid><description><![CDATA[When I start a session of cardiovascular exercise – rowing machine, elliptical, hiking- I feel a strong emotional resistance to the workout. I previously interpreted this opposition as my body telling me that it was incapable of performing the task at hand. But after a month of pushing through the resistance to engage in daily exercise, I came to realize that my greatest obstacle was not my poorly- conditioned body, but the saboteur in my mind.About 1-2 minutes into every workout that involves [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:85.324675324675%; padding:0 15px;"><div class="paragraph">When I start a session of cardiovascular exercise &ndash; rowing machine, elliptical, hiking- I feel a strong emotional resistance to the workout. I previously interpreted this opposition as my body telling me that it was incapable of performing the task at hand. But after a month of pushing through the resistance to engage in daily exercise, I came to realize that my greatest obstacle was not my poorly- conditioned body, but the saboteur in my mind.<br><br>About 1-2 minutes into every workout that involves cardio, the annoying voice in my head tries to derail me. I named her&nbsp;At&euml; in a previous post, after the Greek goddess of&nbsp;mischief, delusion, ruin, folly, rash action and reckless impulse. At&euml; thinks I should give up the moment it gets difficult or boring.&nbsp;&nbsp;At&euml; pressures me to stop after 5 minutes in favor of less demanding pursuits like reading or playing Words With Friends.<br><br>But At&euml; isn&rsquo;t the one doing the work. When I hear At&euml;&rsquo;s impassioned plea to stop the workout, I check in with my body. How does my body feel? Is it struggling? <span>Is it in pain or showing signs of cardiovascular injury?&nbsp;</span>Is the workout compromising or damaging my body?&nbsp;<br><br>Invariably, my body answers &ldquo;Thanks for checking in, but I&rsquo;m fine, I can keep going.&rdquo; Through this initial month of daily exercise, I have learned that my body is point-and shoot. I set it to a task and it will do its best to complete it. My physicality is trustworthy. My body is absolutely willing and increasingly able to engage in exercise, including cardio, weights, core exercise, yoga, or anything else I ask it to do. The obstacles are in my mind.<br><br>When I do cardio, my body settles into a rhythm, my muscles working in a strong, satisfying way. I feel physically challenged, but clearly this work is well within my capabilities. At&euml; screams ever-louder &ldquo;NO! this is too much, we hate to work out! Lets stop. You don&rsquo;t need to do more than 5 minutes.&rdquo; I remind At&euml; that she is not the one doing the work and my body is comfortable engaging in the work I set before it.<br><br>At some point in the workout- at about the 10-minute mark for the elliptical and 12 minutes with rowing- At&euml;'s presence begins to fade away. My body still feels strong and capable. It can do more. It wants to do more. Human bodies are built for exercise, and to become fit is to reach one&rsquo;s biological potential in this capacity. Strangely, I find that the pressure to quit is much stronger after exercising for 5 minutes than it is after exercising for 20 minutes.<br><br>How do I feel after the workout? GOOD! Proud. Strong. Astonished. Empowered. I am astonished that completing workouts of this magnitude was even possible for me. What a crazy idea, that my tachycardic, breathless, pulse-pounding, jelly-muscled body can engage in respectable workouts without complaint!<br><br>For those new to my blog, the backstory goes like this:<br>A month ago I redefined myself as a person who incorporates serious exercise into my daily routine. This paradigm shift was monumental. My self-concept was that of a person who hates aerobic exercise. My heart pounded with even the lightest exertion and that was very unpleasant.<br><br>I had been diagnosed with dysautonomia decades before I was diagnosed with Ehlers Danlos Syndrome. Dysautonomia is a malfunction of the autonomic nervous system, a control center that regulates involuntary functions like heartbeat, breathing and digestion. I have had issues with rapid heartrate and fainting throughout my life. These cardiovascular symptoms appear mostly when I am standing for a long time. Whenever I exercised vigorously, I felt a similar pounding of my heart and shortness of breath, my pulse racing out of proportion to my activity. I concluded that my autonomic malfunction rendered me unable to exercise, and I operated under that assumption for decades.<br>I was wrong.<br>In this month of daily rigorous exercise, I learned that my racing heart on exertion was merely the response of an unfit body. My heart was pounding because I hadn&rsquo;t been exercising. My misperception had become a feedback loop that reinforced the belief. My mind said &ldquo;I cant do cardio because my heart races&rdquo;, so I didn&rsquo;t exercise, then became progressively weaker and deconditioned, which decreased my tolerance for exercise, which strengthened my belief that I &ldquo;couldn&rsquo;t&rdquo; do cardio.<br>I was wrong.<br>When I started working out on February 24, 2022, I could do 1.5 minutes on the rowing machine and 0.11 miles on the elliptical. After reaching these thresholds, I felt exhausted, with racing heart and burning thighs. My saboteur mind chimed in &ldquo;See, you cant do cardio&rdquo;. &nbsp;Yet after a month of daily workouts, I could work out on the elliptical for 50 minutes/3.7 miles or on the rower for 3 eight-minute sets, each followed by a weight-lifting regime for arms or legs. Once a week I had a mega-workout day, wherein I would row or elliptical, lift weights or circuit train, then take a 2.5 mile brisk hike over hilly terrain. Astonishing.&nbsp;<br>&nbsp;&nbsp;<br><span>For me, the key to fitness is to listen to my body and ignore the inner voice that seeks to derail me.&nbsp;</span>I know now my body can easily complete my workouts. In fact, the exercise has improved my dysautonomia; I have fewer episodes of tachycardia and I am better able to tolerate prolonged standing -after a single month of daily exercise! Wow, what a game-changer! All of my obstacles are self-imposed and come from that inner voice of negativity and resistance.&nbsp;I am learning to quiet my inner critic and focus on the health of my body, mind, and spirit. Because that is the true source of my wisdom.&nbsp;</div><div><div class="wsite-image wsite-image-border-none" style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/2021r0802-055400.jpg?1648636958" alt="Picture" style="width:138;max-width:100%"></a><div style="display:block;font-size:90%"></div></div></div><div><div id="535945606968356077" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml">Share button <!-- AddToAny BEGIN --><div class="a2a_kit a2a_kit_size_32 a2a_default_style"><a class="a2a_dd" href="https://www.addtoany.com/share"></a> <a class="a2a_button_facebook"></a> <a class="a2a_button_twitter"></a> <a class="a2a_button_email"></a></div> <!-- AddToAny END --></div></div><div class="wsite-spacer" style="height:10px;"></div><div><div id="164142378593740689" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><!-- AddToAny BEGIN --><div class="a2a_kit a2a_follow a2a_default_style" data-a2a-url="https://www.howwedidthat.com/6/feed"><a class="a2a_dd" href="https://www.addtoany.com/subscribe"><img src="https://static.addtoany.com/buttons/subscribe_256_24.png" width="256" height="24" border="0" alt="Subscribe"></a></div> <!-- AddToAny END --></div></div></td><td class="wsite-multicol-col" style="width:14.675324675325%; padding:0 15px;"><div class="wsite-adsense"></div><div class="wsite-adsense"></div></td></tr></tbody></table></div></div></div><div style="text-align:left;"><div style="height:10px;overflow:hidden"></div><span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-instagram' href='https://www.instagram.com/howwedidthat/' target='_blank' alt='Instagram' aria-label='Instagram'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-linkedin' href='https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-mail' href='mailto:social@howwedidthat.com' target='_blank' alt='Mail' aria-label='Mail'><span class='wsite-social-item-inner'></span></a></span><div style="height:10px;overflow:hidden"></div></div>]]></content:encoded></item><item><title><![CDATA[Triumph! The first 30 days of fitness training]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/triumph-the-first-30-days-of-fitness-training]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/triumph-the-first-30-days-of-fitness-training#comments]]></comments><pubDate>Sun, 27 Mar 2022 10:17:49 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/triumph-the-first-30-days-of-fitness-training</guid><description><![CDATA[ 	 		 			 				 					 						  &#8203;Today is day 30 of my program of near-daily workouts. I began exercising as a person with no prior success in initiating or maintaining an exercise program. This time was different. I redefined myself as a person who exercises at least 5x a week, every week, for life. Some of you wanted to follow along as I reach my goals and grow stronger. I have a really great personal trainer who is tailoring exercises to my capabilities and limitations. I love working out  [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"> 	<table class="wsite-multicol-table"> 		<tbody class="wsite-multicol-tbody"> 			<tr class="wsite-multicol-tr"> 				<td class="wsite-multicol-col" style="width:71.428571428571%; padding:0 15px;"> 					 						  <div class="paragraph">&#8203;Today is day 30 of my program of near-daily workouts. I began exercising as a person with no prior success in initiating or maintaining an exercise program. This time was different. I redefined myself as a person who exercises at least 5x a week, every week, for life. Some of you wanted to follow along as I reach my goals and grow stronger. I have a really great personal trainer who is tailoring exercises to my capabilities and limitations. I love working out at the Y. Here is my progress:<br />Elliptical: On day 1, I could only do 0.11 miles. Today I did 3.7 miles in 50 minutes at a moderate pace.<br />Rowing. I could do 1.5 minutes of rowing on the rowing machine on day one and thought I would die. Now I can do three consecutive 8-minute rows with 2 min breaks inbetween.<br />Circuit training: I do the leg, trunk and back machines 2-3 times a week. I can&rsquo;t do the arm machines at all, either because they are too heavy or because the injured arm does not have sufficient range of motion.<br />Arms: I do arms 2-3 times per week. On day 1, I could bicep curl 1 lb on the injured arm in 2 sets of 8. Now I can curl 3 lb in a set of 10 reps and 2 lb in 2 sets of 15 reps. I lift light weights while sitting on the ball for core and balance. I do the TheraBand exercises and bar pushups (cant do one on the ground, never could). I do the exercises assigned by my physical therapist to stretch the arm.<br />Core: I do some core every day. I am doing bridges, marches, crunches on the ball, squats, &ldquo;dead bugs&rdquo; &ldquo;bird dogs&rdquo; leg lifts on the ball, and hula hooping.<br />Swimming: I am strong enough to do a quarter lap without stopping, one time, using a kickboard. Im building endurance with a kickboard and doing floaty &ldquo;weights&rdquo; to build strength. I want to be able to do laps someday.<br />Hiking: At least once a week I do brisk hike of moderate difficulty between 1 and 2 miles.<br />Fitbit: I hit 10,000 steps or more about half of the days, and 6,000 steps or more on almost all of them. It really keeps me motivated, I love seeing my data.<br />Protein: As it turns out, it isn&rsquo;t too hard to get enough protein if I make protein powder smoothies every day. I get about 100 g a day or more.<br />Water: It is very difficult for me to get enough water. I must have been chronically dehydrated all of these years. It is difficult to reach my 100 oz goal, particularly when I am at work. Nonetheless, I reached my goal about 85% of the time.<br />Calories: I previously had trouble graining because I wasn&rsquo;t eating enough. I want to gain very gradually, muscle not fat. I figured out that I can increase the calories in a smoothie by adding coconut milk, which is nutritious and high calorie and very digestible. When I need more calories I add more, when I am gaining too fast, I add less or don&rsquo;t use it at all.<br />Effects: I have adapted to workouts surprisingly fast, and am astonished by how quickly I am gaining the ability to do cardio. I do feel healthier overall and feel the pride of accomplishment after each workout. Last fall I had a slumpy, round-shouldered&nbsp; posture when sitting and walking, due to a weak core that was not holding me upright. My posture has definitely improved and I feel like my core supports&nbsp; me on a more vertical plane. This morning I felt the tiniest hint of a muscle developing in my upper arm!<br /> I try to focus on the positive effects of each workout - feeling proud, feeling vibrant, feeling accomplished, and that fuels motivation. My Fitbit also fuels motivation when it displays encouraging messages when I hit 10,000 steps or drink 100 oz of water. These are the rewards that keep me going. That and the knowledge that quitting is not an option. This is my path now.&nbsp;</div>  <div style="text-align:left;"><div style="height:10px;overflow:hidden"></div> <span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-linkedin' href='https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-mail' href='mailto:social@howwedidthat.com' target='_blank' alt='Mail' aria-label='Mail'><span class='wsite-social-item-inner'></span></a></span> <div style="height:10px;overflow:hidden"></div></div>   					 				</td>				<td class="wsite-multicol-col" style="width:28.571428571429%; padding:0 15px;"> 					 						  <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:left"> <a> <img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/277459398-10229739872587937-3207065962057872434-n.jpg?1648636986" alt="Picture" style="width:121;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div>  <div class="wsite-adsense">               </div>  <div class="wsite-adsense">               </div>   					 				</td>			</tr> 		</tbody> 	</table> </div></div></div>]]></content:encoded></item><item><title><![CDATA[Why I love my Fitbit Versa 3]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/why-i-love-my-fitbit-versa-3]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/why-i-love-my-fitbit-versa-3#comments]]></comments><pubDate>Sun, 20 Mar 2022 09:07:25 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/why-i-love-my-fitbit-versa-3</guid><description><![CDATA[What follows is not a paid review, but rather is an honest assessment of my Fitbit Versa 3, which I love. I posted a copy of this review on the Amazon site as well. I have owned Fitbits before and liked them all but the Versa 3 is the best yet. It has been a great motivator.I bought my Versa 3 directly from the Fitbit website. I love it! My doctor said I MUST build muscle and do cardio if I am to have any quality of life in the future. And I have NEVER stuck to any kind of exercise program in my [...] ]]></description><content:encoded><![CDATA[<div class="paragraph"><span>What follows is not a paid review, but rather is an honest assessment of my Fitbit Versa 3, which I love. I posted a copy of this review on the Amazon site as well. I have owned Fitbits before and liked them all but the Versa 3 is the best yet. It has been a great motivator.</span></div><div><div id="377967996556486649" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ss&amp;ref=as_ss_li_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;language=en_US&amp;marketplace=amazon&amp;region=US&amp;placement=B08FS93XDK&amp;asins=B08FS93XDK&amp;linkId=3972e767343829e20fed383414265ef5&amp;show_border=true&amp;link_opens_in_new_window=true"></iframe></div></div><div class="paragraph">I bought my Versa 3 directly from the Fitbit website. I love it! My doctor said I MUST build muscle and do cardio if I am to have any quality of life in the future. And I have NEVER stuck to any kind of exercise program in my life. In that moment, I redefined myself. I created the self-concept that I am now a person who exercises and I must do something active every day of my life from now on. But how to stay motivated? How to bring some fun into the routine. The answer was get a Fitbit, a fancy one with all the options.&nbsp;<br><br>I am a competitive person, but only with myself. I find it fascinating that the woman next to me is pumping huge amounts of iron, but what matters to me is that I was only able to curl 1 pound with my injured arm three weeks ago and now I can do 3 pounds. When I started using the elliptical a month ago I could only do 0.11 miles; three weeks later I can sustain 45 minutes and 3.3 miles! I compete with myself to challenge my personal bests. The Fitbit is terrific for this, because it stores all of my data and I can see evidence that I am getting stronger and developing endurance. I can even wear it swimming!<br><br>It also rewards me for a job well done. Some people reward themselves with a cookie - not me. I feel amply rewarded when I hit those 10,000 steps and the display in the ap flashes and says "You did it!" I find the rewards provided by the Fitbit - goal achievement and&nbsp; a graphic display of what I accomplished for the day -- are strong motivators.<br><br>I love that I can set the exercise timer to specific activities. When I hike, it tracks my route by GPS, and afterwards I can see not only my mileage, but my route on a map, my pace, and how hard I exercised along the way.&nbsp; I have the premium membership, which unlocks all of the features. The Versa 3 tracks my heartrate, my heartrate variability, my body temperature while sleeping, sleep stages, and my readiness for exercise. It can also track mindfulness and mood, and has tutorials and exercises to cultivate calmness.&nbsp;<br><br>A few Amazon reviews mentioned that Fitbit has poor customer service, and that gave me pause when considering which device to buy. This was not my experience! As it turns out, I needed to use customer service within the first 3 weeks of purchase- the Fitbit wouldn't change and the battery went dead.&nbsp; I ran into problems with their "message a representative" options - the site kept giving me error messages. However, when I called the help desk number (which was not difficult to find on the site) I was only on hold a short time before an agent answered and guided me though the surprisingly simple answer to my problem. I had slathered on moisturizing&nbsp; lotion after my shower the night before, and it obstructed the charging contacts. She had me swab the charging surfaces of the Fitbit and the charger with an alcohol wipe, and that resolved the issue. So, A+ for customer service.&nbsp;<br><br>The ap includes a feature where I can log my water intake (hydration is a huge challenge for me) and log my food intake. At the end of the day I can see my intake of not only calories but carbs, fats, and proteins.&nbsp; &nbsp;I have learned a lot about my eating habits and how to strategize for improvement.&nbsp;&nbsp;<br><br>The versa 3 specifically is super comfortable and I like the big wide display. It is&nbsp; easy to read even in bright sunlight. I got the pink one, which is a pretty, cheerful salmon color. You can change the clock face to whatever display pleases you. There are third party options for displays. I like the one with the dandelion that opens into a full seed head as you do more exercise.&nbsp; I finally settled on the photo display that allows you to upload your own image. My choice is a painting I made of my beloved horse who recently died- it is comforting to see her on my Fitbit whenever I check the time or data.&nbsp;<br><br>There are a few shortcomings. I am a midwife and work 24 hr shifts; we nap when we can. When I sleep in 2 or 3 hour intervals the Fitbit does not track my sleep stages. Also, annoyingly, when I am lying in bed unable to sleep, the Fitbit thinks I am in either light sleep or REM sleep.&nbsp; This design flaw artificially inflates my sleep total; the ap might say I got 6.5 hr and bestows a good sleep score, when in reality only I logged only 4.5 hours of sleep and I was groggy and cranky all day. Another problem is that I want to gain weight. Fitbit is heavily slanted towards people who want to lose or maintain. The ap does not have a feature that tracks calories towards my goal of a 10 pound slow gain to support muscle development. Also, while there are settings for tracking elliptical, circuit training, hiking, etc, there is no setting for rowing. I use the general workout setting when I row.&nbsp;<br>The Versa 3 was pricy, and I had to carefully weigh the options before purchasing one of the most expensive trackers on the market. Overall, though, Fitbit in general and Versa 3 in particular are worth the investment. I think if I had bought a cheaper tracker with fewer features, I would have eventually bought a Versa 3 down the road. I previously owned Fitbits, and the Versa 3 is the best of them.&nbsp;</div><div><div id="266644698706141121" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><!-- AddToAny BEGIN --><div class="a2a_kit a2a_kit_size_32 a2a_default_style"><a class="a2a_dd" href="https://www.addtoany.com/share"></a> <a class="a2a_button_facebook"></a> <a class="a2a_button_twitter"></a> <a class="a2a_button_email"></a></div> <!-- AddToAny END --></div></div><div style="text-align:left;"><div style="height:10px;overflow:hidden"></div><span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-linkedin' href='https://www.bonnieworks.com//%20https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a></span><div style="height:10px;overflow:hidden"></div></div><div><div id="239468119700066283" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ss&amp;ref=as_ss_li_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;language=en_US&amp;marketplace=amazon&amp;region=US&amp;placement=B08FS93XDK&amp;asins=B08FS93XDK&amp;linkId=3972e767343829e20fed383414265ef5&amp;show_border=true&amp;link_opens_in_new_window=true"></iframe></div></div>]]></content:encoded></item><item><title><![CDATA[Frozen shoulder: helpful products for the person with Ehlers Danlos Syndrome]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/frozen-shoulder-helpful-products-for-people-with-ehlers-danlos-syndrome]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/frozen-shoulder-helpful-products-for-people-with-ehlers-danlos-syndrome#comments]]></comments><pubDate>Sat, 12 Mar 2022 13:02:12 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/frozen-shoulder-helpful-products-for-people-with-ehlers-danlos-syndrome</guid><description><![CDATA[​As a person with Ehlers-Danlos syndrome, I am no stranger to joint dysfunction and pain - but the difficulties I developed with my shoulder this past fall have been among my greatest challenges presented by this disease. It started in September with minor tenderness with certain repetitive movements, and progressed to life-limiting tendinopathy, rotator cuff tear and adhesive capsulitis (frozen shoulder) by January. All through December and especially January, the pain was difficult to manage [...] ]]></description><content:encoded><![CDATA[<div class="paragraph">&#8203;As a person with Ehlers-Danlos syndrome, I am no stranger to joint dysfunction and pain - but the difficulties I developed with my shoulder this past fall have been among my greatest challenges presented by this disease. It started in September with minor tenderness with certain repetitive movements, and progressed to life-limiting tendinopathy, rotator cuff tear and adhesive capsulitis (frozen shoulder) by January. All through December and especially January, the pain was difficult to manage. After 2 corticosteroid injections and vigorous physical therapy, I am finally making progress towards healing.&nbsp;&nbsp;<br>&#8203;<br>This is the story of the products that have been helpful to me in my healing so far. All are available at Amazon and links are included below. If you follow the link to Amazon I get a few cents when you purchase it, and in so doing you will support this blog. What follows are honest reviews of products which I found&nbsp;helpful. I tried a lot of products, often buying 3 or 4 items before I found the one that actually helped. Hopefully what worked for me is also helpful to you if you are struggling with a similar condition.&nbsp;<br></div><div class="paragraph">&#8203;I had to sleep in the guest room propped up on a high wedge from&nbsp;<strong>AllSett Health (folding memory foam incline cushion system)&nbsp;</strong>with pillows along both sides to limit movement. Many people move to a recliner chair for the duration. As any movement woke me with pain, it was a real challenge to structure my beds space to maximize comfort and minimize movement. I was most comfortable sleeping in a high semi-sitting position, using rolled blankets, cushions and thick pillows along both sides of the wedge. Semi-sitting, the pillows supported the arm from elbow to hand, and if I slept on my on my left side the pillows supported the arm comfortably at sternum-height.</div><div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="509545575300626747" align="center" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B07PLMGC9C&amp;asins=B07PLMGC9C&amp;linkId=c09a39c6a08f13a6ca9f0bc8fd823c54&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="182285050461058092" align="center" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B0727RCSBZ&amp;asins=B0727RCSBZ&amp;linkId=45db5e3fc0ec3b6c2782a78d1680687e&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066C0&amp;bg_color=FFFFFF"></iframe></div></div></td><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="469203961288255048" align="center" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B071149H43&amp;asins=B071149H43&amp;linkId=52e121866159904d3f2b8d81e50df725&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td></tr></tbody></table></div></div></div><div class="paragraph"><br>I don&rsquo;t want to think what the nights would have been like without my&nbsp;<strong>&uuml;bertherm</strong>&nbsp;Compression Shoulder Ice Pack Wrap. This product was a LIFESAVER. I tried several other&nbsp;braces and compression wraps but none was anywhere near as effective for pain management.&nbsp;&nbsp;It has a wide compartment that holds not only its custom heat/ice pack but also accommodates&nbsp;other brands. The ice pack that came with&nbsp;the&nbsp;<strong>&uuml;bertherm</strong>, however, stays cold much longer than my other&nbsp; ice packs. The compression is perfect, and it greatly reduces the pain of the injury. It would be especially good for supporting a dislocated shoulder as it heals. It stabilized&nbsp;my arm at night and allowed me to sleep much better. It also supported the shoulder&nbsp;while&nbsp;I went about my day and restricted the painful movement. On a bad night, I would&nbsp;sometimes get up 3 times in the night for fresh ice, but the&nbsp;<strong>&uuml;bertherm</strong>&nbsp;worked better for pain management&nbsp;than any other modality.&nbsp;<br>&#8203;<br>The only way I will be able to get normal range of motion into my frozen shoulder without surgery is to stretch it hard. This of course can be excruciating. My physician&nbsp;gave me a series of two steroid shots to reduce inflammation and pain so that I could better mobilize the joint. My physical therapist prescribed stretching exercises including making snow-angels, the prayer press, and wall climbing, The most effective (and painful!) treatment has been the use of a shoulder pulley. I bought&nbsp;an inexpensive but effective model on Amazon for home use, the&nbsp;<strong>Vive over-the-door shoulder pulley</strong>. It really hurts but probably is the most effective method I have tried for regaining mobility. Ask your&nbsp;physical therapist&nbsp;if it would help you too.&nbsp;<br>Stretching the shrink-wrapped tissue is key to healing, but the other essential component is strengthening&nbsp;the arm, and my whole body as well. My physicians&nbsp;have strongly recommended&nbsp;I engage in a regimen of strength training and cardio for the rest of my life. This represents a HUGE lifestyle change for me, but it is the only way to prevent my body from breaking down, so Ill do it. I joined the YMCA,&nbsp; but continue to work out at home. The&nbsp;<strong>Vive resistance&nbsp;band set</strong>&nbsp;works over the door and is easy to use at home.&nbsp;<br></div><div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="296187425474499490" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B071VP9K4W&amp;asins=B071VP9K4W&amp;linkId=5c8b56d40ff23f166f0f22693705c3c8&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="480626199489013170" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B00E5R65SA&amp;asins=B00E5R65SA&amp;linkId=eb6b583012bb902bc9e52f27ea23b598&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="233477955468298018" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B072XT69DR&amp;asins=B072XT69DR&amp;linkId=4e990aac165f7d39fd402b525b13081f&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td></tr></tbody></table></div></div></div><div class="paragraph">&#8203;Embarrassing&nbsp;but true, if you spend a lot of time with your arm strapped to your chest, you will sweat and often incredibly&nbsp;stinky bacteria begin&nbsp;to grow in your armpit. This powerful and horrible underarm odor does not go away with&nbsp;ordinary soaps or cleaning agents. I did, however find&nbsp;<strong>Hibclens</strong>&nbsp;surgical soap to be the solution. Simply wash with&nbsp;<strong>Hibiclens</strong>&nbsp;and apply deodorant&nbsp;as usual and it truly&nbsp;keeps the odor at bay.&nbsp;<br><br>My sports medicine doctor says that if I build muscle to stabilize my joints, my body will likely remain active and functional&nbsp;for years to come. If not, it will fail spectacularly&nbsp;in only a few years. How's&nbsp;that for rocking your world? He specified that while trying to build muscle, I need to take in 60-100gm of protein a day (it is based on my body weight).&nbsp; I am of low-normal weight&nbsp;and have difficulty gaining. Im not a big eater, and I do not want to overload myself&nbsp;with sugar. My body-builder son recommended&nbsp;the&nbsp;<strong>Redcon MRE protein&nbsp;powders</strong>. They are made with real food, real nutrition. They taste pretty good. The one thing I do not like is that they contain sucralose. Life is full of trade offs, and with protein powders you have to decide whether&nbsp;you are willing to accept excessive sugar or artificial&nbsp;sweeteners. MRE works well for me in smoothies.&nbsp;It doesn't&nbsp;taste bad, kinda good actually. I sip on it throughout the day and drink the next one the following day.&nbsp; When I complained about&nbsp;the sucralose&nbsp;to my son, he suggested switching to&nbsp;<strong>Animal Meal.</strong>&nbsp;No artificial&nbsp;sweeteners - it is sweetened with stevia, and he says it&nbsp;feels good in the belly and tastes delicious. I just ordered some and Ill let you know how I like it. I also ordered some Animal Flex joint powder from the same company.&nbsp;<br><br>&#8203;II rely heavily on smoothies to improve my caloric intake and as a way to get the protein powder into my body.&nbsp;I take a 2 quart blender and add oat milk, pomegranate juice, frozen and fresh fruit, coconut milk, chia seeds, yogurt, and proteins&nbsp;powder, and sip the concoction&nbsp;throughout&nbsp;the day until it is gone. It is cheaper than buying those pre-packaged protein&nbsp;drinks, and you have control over what goes into your smoothie; you can use real food. I used to use the Nutribullet but wasn't&nbsp;happy with&nbsp;customer support when the motor started smoking (!). So I switched to using a&nbsp;<strong>Oster Blender Pro 1200 with a glass jar.&nbsp;</strong>I&rsquo;m so glad I switched brands. It is powerful and has been working for years without issues. It is easy to clean and machine washable. I can even put nuts into my smoothies and it pulverizes them perfectly.&nbsp;<br>&#8203;<br>If you are suffering from a frozen shoulder or similar condition, you truly have my sympathies. I hope my recommendations can help you to find the products that will help you to recover more quickly.&nbsp;<br><br></div><div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:33.333333333333%; padding:0 15px;"><div><div id="142133373311160627" align="center" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><iframe style="width:120px;height:240px;" marginwidth="0" marginheight="0" scrolling="no" frameborder="0" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&amp;OneJS=1&amp;Operation=GetAdHtml&amp;MarketPlace=US&amp;source=ac&amp;ref=qf_sp_asin_til&amp;ad_type=product_link&amp;tracking_id=howedidthat-20&amp;marketplace=amazon&amp;region=US&amp;placement=B07H83C61Y&amp;asins=B07H83C61Y&amp;linkId=d2dcccc244477ca5c7ac3ddb28cd2388&amp;show_border=false&amp;link_opens_in_new_window=false&amp;price_color=333333&amp;title_color=0066c0&amp;bg_color=ffffff"></iframe></div></div></td><td class="wsite-multicol-col" style="width:33.333333333333%; 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padding:0 15px;"><div class="wsite-adsense"></div></td></tr></tbody></table></div></div></div>]]></content:encoded></item><item><title><![CDATA[Determination and the Dichotomy of Will]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/determination-and-the-dichotomy-of-will]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/determination-and-the-dichotomy-of-will#comments]]></comments><pubDate>Fri, 04 Mar 2022 10:30:37 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/determination-and-the-dichotomy-of-will</guid><description><![CDATA[When I first embarked upon this new way of life (workout; push water; push protein; push calories – inserted into already-busy days) I suspected that motivation to stay the course would be my most hazardous potential pitfall. But why? What is the root cause of the inertia that prevents action? I am a strong person with decisive clarity of mind when I choose to exercise it. Why is there a dichotomy of wills if I am a single individual? &nbsp;Who else is in there with me?Upon deeper reflection,  [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:71.428571428571%; padding:0 15px;"><div class="paragraph">When I first embarked upon this new way of life (workout; push water; push protein; push calories &ndash; inserted into already-busy days) I suspected that motivation to stay the course would be my most hazardous potential pitfall. But why? What is the root cause of the inertia that prevents action? I am a strong person with decisive clarity of mind when I choose to exercise it. Why is there a dichotomy of wills if I am a single individual? &nbsp;Who else is in there with me?<br><br>Upon deeper reflection, I can see that my best self is my super-ego persona, Strong Bonnie.&nbsp; I have had a lifetime of practice building her, and she is steadfast, reliable, and always true. But darting around my peripheral vision is this sneaky little id-imp that attempts to lead me astray whenever my guard is down. Throughout my life she has been devious, amorphous, shape-shifting. It has been hard to pin her down for more than a few minutes at a time. But now, I will give her a name: At&euml;, after the Greek goddess of&nbsp;mischief, delusion, ruin, folly, rash action and reckless impulse.<br><br>At&euml;, step forward into the light, please, so I can call you out, strip you naked, and learn your game. Oh! There you are! You&rsquo;re not as imposing or substantial as I thought you would be. At&euml;, my nemesis, my friend, we are on the same side- after all, we are the same person-- and we need to pull together for the optimal health of the body we share.<br><br>I will be listening for your voice, At&euml;. Your impulses have a strong emotional pull but they almost never lead me down the path of greater good. You are childlike, capricious, and fickle. Your version of truth is not to be trusted. Our new path places my physical and emotional health at the center of the hub, and all else that is good and necessary will be worked in from the periphery. Our health now has a tangible blueprint. &nbsp;When you try to derail or distract me, At&euml;, I will stay the course and honor my convictions, my decisions, and my perseverance. If you choose to use your powers for good, I will greatly welcome any positive contribution. If not, I will ignore your distractions, fix you with a stern glare, and shame you into silence.</div></td><td class="wsite-multicol-col" style="width:28.571428571429%; padding:0 15px;"><div><div class="wsite-image wsite-image-border-none" style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/published/20201004-064519.jpg?1648637027" alt="Picture" style="width:99;max-width:100%"></a><div style="display:block;font-size:90%"></div></div></div><div class="wsite-adsense"></div></td></tr></tbody></table></div></div></div><div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:50%; padding:0 15px;"><div class="paragraph">Share this post!</div><div><div id="449230238928396549" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><!-- AddToAny BEGIN --><div class="a2a_kit a2a_kit_size_32 a2a_default_style"><a class="a2a_dd" href="https://www.addtoany.com/share"></a> <a class="a2a_button_facebook"></a> <a class="a2a_button_twitter"></a> <a class="a2a_button_email"></a></div> <!-- AddToAny END --></div></div><div style="text-align:left;"><div style="height:10px;overflow:hidden"></div><span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-linkedin' href='https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a></span><div style="height:10px;overflow:hidden"></div></div></td><td class="wsite-multicol-col" style="width:50%; padding:0 15px;"><div class="wsite-adsense"></div></td></tr></tbody></table></div></div></div>]]></content:encoded></item><item><title><![CDATA[When your patient has signs of Ehlers Danlos Syndrome]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/when-your-patient-has-signs-of-ehlers-danlos-syndrome]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/when-your-patient-has-signs-of-ehlers-danlos-syndrome#comments]]></comments><pubDate>Sun, 27 Feb 2022 10:26:18 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/when-your-patient-has-signs-of-ehlers-danlos-syndrome</guid><description><![CDATA[I am a certified nurse-midwife and women's health nurse practitioner who was not diagnosed with Ehlers Danlos Syndrome until the age of 55. All of the signs and symptoms were there since childhood, and I often sought medical care for conditions that pointed directly to the diagnosis. EDS, however, is an uncommon and largely underdiagnosed condition that slips under the radar of even conscientious providers. The evidence for my condition was right there in front of them, but they saw only the pre [...] ]]></description><content:encoded><![CDATA[<div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"><table class="wsite-multicol-table"><tbody class="wsite-multicol-tbody"><tr class="wsite-multicol-tr"><td class="wsite-multicol-col" style="width:85.324675324675%; padding:0 15px;"><div class="paragraph">I am a certified nurse-midwife and women's health nurse practitioner who was not diagnosed with Ehlers Danlos Syndrome until the age of 55. All of the signs and symptoms were there since childhood, and I often sought medical care for conditions that pointed directly to the diagnosis. EDS, however, is an uncommon and largely underdiagnosed condition that slips under the radar of even conscientious providers. The evidence for my condition was right there in front of them, but they saw only the presenting complaints, not the condition that created them. Likewise, I am a highly educated medical professional, and I too failed to put my own puzzle together.&nbsp;<br><br>Clinicians (doctors, nurse practitioners, physician assistants, nurses, physical therapists) can change the lives of people with undiagnosed Ehlers Danlos Syndrome (EDS) by noticing the clinical signs and referring appropriately. Many people with EDS go their whole lives without ever realizing that they have a connective tissue disorder. If they are unaware of the condition, they are more likely to suffer pain, dysfunction, and disability. Getting proper treatment can make a lifetime of difference for these people. Individuals with Ehler's Danlos Syndrome can have manifestations of the disease in virtually any bodily system: musculoskeletal, autonomic nervous system, integumentary, cardiovascular, digestive, respiratory, neurologic, and so on.&nbsp;&nbsp;<ul><li>They may have loose joints. Hypermobility is the tendency for a joint to move beyond its normal range of motion. Flexibility is a good thing when it is coupled with strength. When the person has weak muscles or an imbalance of strength, joints move too far and injury can occur. Shoulders, elbows, wrists, fingers, sacroiliac joints, hips, knees, ankles, and feet may develop&nbsp;subluxations, locked movement, acute or chronic pain&nbsp;or frequent injury. The person may report joint dislocations that occur with minimal provocation.</li><li>They may have chronic pain. Often, the person has been dismissed or labeled by other providers as drug-seeking because they appear outwardly healthy. But Ehlers-Danlos Syndrome involves joints that shift and place pressure on nerves, sending referred pain to unaffected regions. It involves spasm as&nbsp;&nbsp;muscles clench to compensate for excessive joint movement. Often people with Ehlers Danlos must adjust&nbsp;to a baseline level of pain which is present every day, no matter how well they appear to be functioning.&nbsp; And yes, some individuals are drug-seeking, hoping to get some relief.&nbsp; Some individuals turn to substance abuse to achieve some level of comfort to get though the day.&nbsp; But most are uncomfortable and are simply seeking a strategy to lessen the pain. Physical therapy with a provider familiar with EDS can be a godsend.&nbsp;</li><li>They may have hernias and pelvic prolapses.</li><li>They may have&nbsp;numerous dental cavities. People with EDS are also often less sensitive to Novocain.</li><li>They may have wide, flat scars. Even small cuts may leave prominent scars.&nbsp; Often there are large&nbsp; scars on the knees from childhood falls.</li><li>They may have orthostatic tachycardia or POTTS. Some people with EDS faint frequently.</li><li>They may have easy or unexplained bruising.&nbsp;People with vascular EDS often have large bruises in various stages of healing with poor recall as to how they occurred.</li><li>They may have delayed gastric emptying and slow gut motility. They may have difficulty swallowing.</li><li>They may have a diagnosis of fibromyalgia. The muscles of a person with EDS are often rigid from holding joints in place and may have painful trigger points.</li><li>They may have chronic fatigue, anxiety, depression. Wouldn't you if you were struggling, quite literally, to "hold it together" every day?</li><li>They may have Mast Cell Activation Disorder, <font color="#4D5156">&nbsp;a condition in which the mast cells in the body release too much of&nbsp;the substances&nbsp;that cause&nbsp;allergy symptoms.</font></li><li>They may have obstructive sleep apnea if soft tissue or excessive neck flexion impinges on the airway during sleep.</li><li>They may have poor proprioception and have trouble knowing where the body is in space. They are prone to misjudging distances and walking into doors, chairs, etc.</li><li>They may have family members with the disorder. EDS is autosomal dominant. Statistically, if a person has EDS, at least half of their children will have it as well. Ask about other family members with these symptoms.</li></ul><em>Suspect your client might have EDS</em> if you come into the exam room and the person is sitting in some weird position. And you&rsquo;re thinking how can that be comfortable? The person with EDS adopts unusual positions to relieve pain and tension elsewhere in the body.&nbsp;<br><em>&#8203;Suspect EDS</em> when your young adult client develops cystoceles, rectoceles, and other pelvic support problems. Pelvic support problems can even occur in nulliparous teenager with EDS.<br><em>Suspect EDS</em> if your obstetric client has a separated symphysis or other pelvic girdle issues. A person with EDS is three times more likely to require treatment for pelvic girdle pain and instability.<br><em>Suspect EDS</em> if your client has a precipitous delivery. Labor is all about overcoming the resistance of maternal tissue. A mother with stretchy tissue may dilate rapidly.<br><em>Suspect EDS</em> if your client has massive varicose veins in the legs and vulva.<br><em>Suspect EDS</em> if your client has uncommonly velvety soft skin. The skin of the face may have a more youthful appearance, but the hands may appear more aged and wrinkled. The skin may be abnormally stretchy.&nbsp;<br><br>You can change this patient's life by making appropriate referrals. If a connective tissue disease is present, the sooner a diagnosis and care plan is made, the better a lifelong quality of living this person will have.&nbsp; Referral to the primary care physician is a good starting point. Some people will require a referral to a geneticist to identify which disease process is present and determine the characteristics of the disease. Some people will require referral to physical therapy, a rheumatologist, a gastroenterologist, a cardiologist, an orthopedist, or other professionals. A structured, professionally-devised&nbsp; exercise program is critical for the person with Ehlers Danlos Syndrome. Low-impact cardio such as swimming or elliptical with a regimen of strength training can extend the number of healthy years for these people, reduce the risk of joint damage and dislocations, and reduce chronic pain.&nbsp;</div><div><div id="463037872121004966" align="left" style="width: 100%; overflow-y: hidden;" class="wcustomhtml">Share button <!-- AddToAny BEGIN --><div class="a2a_kit a2a_kit_size_32 a2a_default_style"><a class="a2a_dd" href="https://www.addtoany.com/share"></a> <a class="a2a_button_facebook"></a> <a class="a2a_button_twitter"></a> <a class="a2a_button_email"></a></div> <!-- AddToAny END --></div></div></td><td class="wsite-multicol-col" style="width:14.675324675325%; padding:0 15px;"><div><div class="wsite-image wsite-image-border-none" style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"><a><img src="https://www.bonnieworks.com/uploads/1/1/9/6/119677144/20181225-094155_orig.jpg" alt="Picture" style="width:auto;max-width:100%"></a><div style="display:block;font-size:90%"></div></div></div><div class="wsite-adsense"></div><div class="wsite-adsense"></div><div class="wsite-adsense"></div></td></tr></tbody></table></div></div></div><div style="text-align:left;"><div style="height:10px;overflow:hidden"></div><span class="wsite-social wsite-social-default"><a class='first-child wsite-social-item wsite-social-facebook' href='https://www.facebook.com/bonnie.gruenberg' target='_blank' alt='Facebook' aria-label='Facebook'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-twitter' href='https://www.bonnieworks.com//%20https://twitter.com/HowWeDIDthat' target='_blank' alt='Twitter' aria-label='Twitter'><span class='wsite-social-item-inner'></span></a><a class='wsite-social-item wsite-social-linkedin' href='https://www.linkedin.com/in/bonnie-gruenberg-00883617/' target='_blank' alt='Linkedin' aria-label='Linkedin'><span class='wsite-social-item-inner'></span></a><a class='last-child wsite-social-item wsite-social-mail' href='mailto:social@howwedidthat.com' target='_blank' alt='Mail' aria-label='Mail'><span class='wsite-social-item-inner'></span></a></span><div style="height:10px;overflow:hidden"></div></div>]]></content:encoded></item><item><title><![CDATA[The path to diagnosis of Ehlers Danlos Syndrome]]></title><link><![CDATA[https://www.bonnieworks.com/ehlers-danlos/the-path-to-diagnosis-of-ehlers-danlos-syndrome]]></link><comments><![CDATA[https://www.bonnieworks.com/ehlers-danlos/the-path-to-diagnosis-of-ehlers-danlos-syndrome#comments]]></comments><pubDate>Thu, 17 Feb 2022 11:26:42 GMT</pubDate><category><![CDATA[Uncategorized]]></category><guid isPermaLink="false">https://www.bonnieworks.com/ehlers-danlos/the-path-to-diagnosis-of-ehlers-danlos-syndrome</guid><description><![CDATA[Ehlers Danlos Syndrome is one of the most common connective tissue disorders. The basic problem is that the recipe that the body uses to make collagen is defective. Imagine if a carpenter used a blueprint to build a house that called for not timbers and nails but for greensticks and bubble gum? &nbsp;There is connective tissue throughout the body, and when this tissue is defective it can cause weakness and dysfunction in a wide range of body systems. There are several subtypes within the syndrom [...] ]]></description><content:encoded><![CDATA[<div class="paragraph">Ehlers Danlos Syndrome is one of the most common connective tissue disorders. The basic problem is that the recipe that the body uses to make collagen is defective. Imagine if a carpenter used a blueprint to build a house that called for not timbers and nails but for greensticks and bubble gum? &nbsp;There is connective tissue throughout the body, and when this tissue is defective it can cause weakness and dysfunction in a wide range of body systems. There are several subtypes within the syndrome. One person may primarily have issues with joints moving beyond the normal range of motion. Another may have problems with blood vessels bursting.<br /><br />I have had EDS my entire life but was diagnosed at the age of 55. Before my diagnosis, I didn&rsquo;t realize the disease occurs on a spectrum from mild to severe. My sister, on the other hand, was severely affected with EDS. &nbsp;She was so hypermobile her joints would literally fall out of the socket. Once a co-worker gave her a High Five and it took the hospital 4 hrs to secure her joint back into the socket. &nbsp;Her shoulders would even dislocate when she was sleeping. Can you imagine waking from a deep sleep with a dislocated shoulder? &nbsp;She had surgery to keep her joints in place. People with EDS, however, do not heal well from surgery, because healing is accomplished by collagen, and people with EDS have a faulty recipe for collagen. Surgery can make pain and disability worse for the person with EDS.&nbsp; Moreover, &nbsp;people with EDS are predisposed to developing chronic pain syndromes, especially following surgery. My sister was disabled by age 35.<br /><br />My EDS manifestations were milder, but they were always there. People with connective tissue disorders tend to be unusually bendy, but their muscles are often rigid to stabilize abnormally loose joints. When I was a kid, I usually chose to sit in weird positions that made other people cringe. I could easily put my legs behind my head. Many people believe that it is a wonderful thing&nbsp; to have a highly flexible body. After all, those healthy yoga masters that achieve enviable degrees of flexibility are the picture of optimal health. But the yoga master has worked to achieve not only flexibility, but also muscular strength and balance.<br /><br />Many people with EDS have extreme flexibility but have weak or unbalanced musculature. Often, one &nbsp;group of muscles is strong, but the opposing ground of muscles is uncommonly weak, setting the stage for injury. &nbsp;As people with EDS live their lives, their joints are always moving beyond the healthy range of motion, and that causes damage. Joints that move out of place put pressure on nerves and other structures and cause damage. Over time, people with EDS are more prone to joint disease and torn tendons. This damage can lead to freezing and immobilization of joints.<br /><br />&nbsp;For my first few decades of life, my shoulders would subluxate whenever I reached over my head. If I reached for a book on a shelf and sneezed, one or both shoulders would slip out, then slip back in. It was very painful, and every time it happened the joint became weaker. In grade school, I frequently sprained my ankles. In high school my knees would collapse. Id be walking across the cafeteria and a knee would give out, and there I was on the ground with my lunch on top of me. In my 20&rsquo;s, while I was working as a paramedic, my sacroiliac joints began to slip and lock.<br /><br />I knew I was bendy but didn&rsquo;t realize that my hypermobility represented a disease process. I saw my sister dealing with her truly serious issues and never considered that I also had a connective tissue disorder because I was only dealing with sprains, slipped joints and fainting.<br />Then I was 55, a physical therapist noticed my hypermobility and suggested I might have a connective tissue disorder. My PCP had me evaluated, I was diagnosed, and suddenly my life made sense. As it turns out, my mother probably has a mild manifestation of EDS, while my child is severely affected and is currently on disability.<br /><br />Building strong muscles can compensate for weak, stretchy ligaments. Most people with eds benefit greatly from physical therapy and customized exercise programs. Knowing I have EDS allows me to maximize my health and strategize about preventative maintenance that will improve my long-term health.<br />&#8203;&nbsp;</div>  <div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"> 	<table class="wsite-multicol-table"> 		<tbody class="wsite-multicol-tbody"> 			<tr class="wsite-multicol-tr"> 				<td class="wsite-multicol-col" style="width:50%; padding:0 15px;"> 				</td>				<td class="wsite-multicol-col" style="width:50%; padding:0 15px;"> 					 						  <div class="wsite-adsense">               </div>   					 				</td>			</tr> 		</tbody> 	</table> </div></div></div>]]></content:encoded></item></channel></rss>