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Uncategorized Archives | Strengthening EDS Connections!

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Terms of Use

Meagan’s Memorial Hope At Home Online Talent Show: TERMS OF WEBSITE USE

EFFECTIVE AS OF 4/05/2020

PLEASE NOTE THAT THE ARBITRATION SECTION BELOW CONTAINS PROVISIONS THAT REQUIRE (i) WITH LIMITED EXCEPTIONS, ALL DISPUTES ARISING BETWEEN YOU AND COMPANY UNDER THIS AGREEMENT BE HANDLED BY ARBITRATION, AND (ii) YOU AND COMPANY WAIVE THE RIGHT TO BRING OR PARTICIPATE IN A CLASS ACTION IN CONNECTION WITH SUCH DISPUTES.

This site has been created for your personal enjoyment and entertainment. By visiting the Site, you accept and agree to be bound by these Terms of Use, including any future modifications, which constitute an agreement (“Agreement”) between you and the Company and to abide by all applicable laws, rules and regulations (collectively, “Applicable Law”). Please read this Agreement carefully. Company reserves the right to modify or amend this Agreement without notice at any time, and such modification(s) will be effective upon posting on the Site. All material modifications will apply prospectively only. Your continued use of the Site and/or Company Services following any such modification constitutes your acceptance and agreement to be bound by the Agreement as so modified. It is therefore important that you review this Agreement regularly. If you do not agree to be bound by this Agreement and to abide by Applicable Law, you must immediately leave the Site and discontinue your use of Company Services. You may receive a copy of this Agreement by emailing us at agt.support@etribez.com with the following subject: Website Terms of Use Agreement. Your access to certain Site features may require you to accept additional terms and conditions applicable to such features, in addition to this Agreement, and may require you to download Software or Content (each as defined below) and additional terms may apply. Any questions or comments regarding, or problems with, the Site should be sent to the Site Administrator at:

 

 TERM

This Agreement shall remain in full force and effect while you use the site or have an account. Company may terminate your subscription at any time, without warning. Even after your account expires or is terminated, this Agreement will remain in effect.

 

YOUR PROPRIETARY RIGHTS

You shall retain all ownership rights in your User Content.  By submitting the User Content, you hereby grant to EDS Wisconsin, Inc., in perpetuity, a non-exclusive, royalty-free, sublicenseable and freely transferable license to use, reproduce, distribute, prepare derivative works of, display, adapt, reformat, translate, and otherwise exploit and perform all or any portion of the User Content for any purpose whatsoever, throughout the universe, including, without limitation, in connection with (i) the Program, including, without limitation, advertising, marketing, promotion, merchandising and the exploitation of any and all ancillary and subsidiary rights, and redistributing part or all of the Program (and derivative works thereof), and (ii) the business of EDS Wisconsin, Inc and/or its affiliated companies, including, without limitation, Internet websites, applications, interactive television, video on demand and any other media or technology (including, without limitation, Internet protocol, wireless or interactive platforms or interfaces) through which EDS Wisconsin, Inc. or its Affiliates may distribute content to end users, whether now existing or hereafter developed (together, the “Platforms”), in any and all media formats and through any and all media distribution and advertising and promotional purposes, without accounting, notification, credit or other obligation to you. For the avoidance of doubt, without limiting the generality of the rights granted to EDS Wisconsin, Inc. and/or any Affiliated entity, these rights include, without limitation, the absolute right to edit and/or alter any User Content distribute and synchronize all or any portion of your User Content in timed relation to any other visual elements; to web cast, pod cast, re-publish, re-broadcast, re-platform, port, syndicate, route, and link to and from all or any portion of your User Content; to encrypt, encode and decode, and compress and decompress all or any portion of your User Content; to edit, mix, combine, merge, distort, superimpose, create or add special effects, illusions and/or other material to or of all or any portion of your User Content; to create composite, stunt, comic or unusual photographs, videos, animations, motion pictures and/or voice reproductions from all or a portion of your User Content; and to excerpt and/or extract portions of your User Content in order to host, store, index, categorize and display your User Content on or through the Platforms.  EDS Wisconsin, Inc. has no obligation to review your User Content or to use your User Content in any manner whatsoever.

 

THIRD PARTY LINKS, SERVICES AND ADVERTISING

Company may provide, or third parties may provide, links to other websites, social media services, applications, resources or other services created by third parties (“Third Party Services”). When you engage with the Third Party Service, you are interacting with the third party, not with Company. If you choose to use a Third Party Service and share information with it, the Third Party Services may use and share your data in accordance with the Third Party Service’s privacy policy and your privacy settings on such Third Party Service. In addition, the third party providing the Third Party Service may use other parties to provide portions of the application or service to you, such as technology, development or payment services. Company is not responsible for the content or practices of any websites other than the Site, even if the website links to the Site and even if it is operated by an affiliated company or company otherwise connected with the Site. Company makes no warranties, express or implied, as to the Third Party Services (including the accuracy and completeness of information supplied or the privacy practices thereof). If you decide to access other websites, you do so at your own risk. If Company has provided links or pointers to other websites on the Site or the Company Services, they are solely as a convenience to you and no inference or assumption should be made and no representation should be implied that Company is connected with, operates, controls or endorses these websites. When you access other websites or Third Party Services, Company encourages you not to provide any personally identifiable information unless you know and are comfortable with the party with whom you are interacting and their privacy policy.

 

If you are interested in creating hypertext links to the Site, you must contact Company at edswisconsin@gmail.com before doing so. In establishing hypertext links, you must not represent in any way, expressly or by implication, that you have received the endorsement, sponsorship or support of the Site or Company, including its respective employees, agents, directors, officers and/or shareholders.

 

Company takes no responsibility for third party advertisements which are posted on the Site or the Company Services, nor does it take any responsibility for the goods or services provided by its advertisers.

 

COMPANY NEWSLETTERS; EMAIL ALERTS

Company may deliver newsletters and email alerts to its subscribers on a variety of Company services and programming. If you would like to subscribe to any of the newsletters Company offers, you may do so by clicking on the “Newsletter” link near the bottom of all site pages. If you would like to unsubscribe from any Company newsletter or email alert, you may do so by clicking on the “unsubscribe” link at the bottom of the Company newsletter or email alert that you have signed up to receive.

 

DISCLAIMERS

The Site and Company Services are provided “AS-IS” and “as available” and Company does not guarantee or promise any specific results from use of the Site and/or Company Services. Company expressly disclaims any warranties and conditions of any kind, whether express or implied, including but not limited to, the implied warranties of merchantability, fitness for a particular purpose and non-infringement. In particular, Company makes no warranty that your use of the Site and/or Company Services will be uninterrupted, timely, secure or error-free or that any information obtained by you on, through or in connection with the Company Services or Third Party Services (including but not limited to, through User Content or third party advertisements) will be accurate or reliable. Under no circumstances will Company be responsible for any loss or damage, including but not limited to, property damage, personal injury or death, resulting from use of the Site and/or Company Services, problems or technical malfunction in connection with use of the Site and/or Company Services, attendance at a Company event, any material downloaded or otherwise obtained in connection with the Site and/or Company Services, any User Content, third party advertisement or Third Party Service posted on, through or in connection with the Site and/or Company Services, or the conduct of any users of the Company Services, whether online or offline. Your use of User Content, third party advertisements, Third Party Services and the goods or services provided by any third parties is solely your responsibility and at your own risk. User Content, third party advertisements and Third Party Services do not necessarily reflect the opinions or policies of Company.

 

 LIMITATION OF LIABILITY

IN NO EVENT WILL COMPANY, ANY OF ITS AFFILIATED COMPANIES OR AMERICA’S GOT TALENT’S PRODUCERS, SPONSORS OR ADVERTISERS (OR EACH OF THEIR RESPECTIVE AFFILIATES, LICENSORS, AND SUPPLIERS) BE LIABLE TO YOU OR ANY THIRD PARTY FOR ANY INDIRECT, CONSEQUENTIAL, EXEMPLARY, INCIDENTAL, SPECIAL OR PUNITIVE DAMAGES, INCLUDING, WITHOUT LIMITATION, LOST PROFIT DAMAGES ARISING FROM YOUR USE OF THE COMPANY SERVICES, EVEN IF COMPANY HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES. NOTWITHSTANDING ANYTHING TO THE CONTRARY CONTAINED HEREIN, COMPANY’S LIABILITY TO YOU FOR ANY CAUSE WHATSOEVER AND REGARDLESS OF THE FORM OF THE ACTION, WILL AT ALL TIMES BE LIMITED TO THE AMOUNT PAID, IF ANY, BY YOU TO COMPANY FOR THE COMPANY SERVICES DURING THE TERM OF YOUR USE OF THE SITE AND/OR COMPANY SERVICES.

 

 INDEMNITY

You agree to defend, indemnify and hold harmless Company, any of their affiliated companies and producers, sponsors and advertisers and each of their parents, affiliates and related companies together with their respective employees, agents, directors, officers and shareholders, from and against all the liabilities, claims, damages and expenses (including reasonable attorney’s fees and costs) arising out of your use of the Site and/or Company Services; your failure to use the Site; your breach or alleged breach of this Agreement or your breach or alleged breach of the copyright, trademark, proprietary or other rights of third parties.

 

TERMINATION

Company reserves the right to immediately terminate your use of, or access to, the Site at any time for any or no reason, with our without prior notice or explanation, and without liability. Furthermore, even after your user account or access to a section of the Site is terminated, this Agreement will remain in effect.

 

U.S. EXPORT CONTROLS

Software available in connection with the Site and/or Company Services (the “Software”) is further subject to United States export controls. No Software may be downloaded from the Site or Company Services or otherwise exported or re-exported in violation of U.S. export laws. Downloading or using the Software is at your sole risk.

 

Arbitration

Any dispute arising hereunder shall be arbitrated in binding arbitration in Madison, WI, and before a mutually selected arbitrator experienced in the United States.  Each of you and Company also agrees to give up the right to have claims heard by a jury and the ability to seek to represent, in a class action or otherwise, anyone but each of you and Company. The only exceptions to this are that (i) each of you and Company retains the right to sue in small claims court and (ii) each of you and Company may bring suit in court against the other to enjoin infringement or other misuse of intellectual property rights. 

 

Governing Law

This Agreement shall be deemed negotiated and entered into and shall be construed in accordance with the laws of the State of Wisconsin and the United States applicable to agreements which are negotiated, signed and performed within such state.  All actions, proceedings or litigation arising out of this Agreement shall be instituted and prosecuted solely within the State of Wisconsin. Talent hereby consents to the jurisdiction of the state courts of Wisconsin and the federal courts located in the city of Madison, Wisconsin as to any matter arising out of or relating to this Agreement, and agree that Wisconsin is a convenient forum.

 

Except with respect to Disputes to be resolved through an arbitration process in accordance with the Arbitration Agreement contained above, you and Company agree to submit to the exclusive jurisdiction of the courts located in Madison, Wisconsin, to resolve any Dispute arising out of the Agreement or the Company Services. YOU HEREBY KNOWINGLY, VOLUNTARILY AND INTENTIONALLY WAIVE ANY RIGHT YOU MAY HAVE TO A TRIAL BY JURY IN RESPECT OF ANY LITIGATION (INCLUDING, BUT NOT LIMITED TO, ANY CLAIMS, COUNTERCLAIMS, CROSS-CLAIMS, OR THIRD PARTY CLAIMS) ARISING OUT OF, UNDER OR IN CONNECTION WITH THIS AGREEMENT.

 

YOU AGREE THAT ANY CAUSE OF ACTION YOU MAY HAVE ARISING OUT OF OR RELATED TO THIS AGREEMENT, THE SITE OR THE COMPANY SERVICES MUST BE COMMENCED WITHIN ONE (1) YEAR AFTER SUCH CAUSE OF ACTION ACCRUES. AFTER SUCH PERIOD, SUCH CAUSE OF ACTION SHALL BE PERMANENTLY BARRED.

 

Indemnity

You agree to indemnify and hold Company, companies affiliated with Company, producers, distributors and/or other entities associated with the producers of Company content, each advertiser, sponsor and their advertising agencies, subcontractors and other partners, and their respective officers, agents, partners and employees, harmless from any loss, liability, claim, or demand, including, but not limited to, reasonable attorneys’ fees, made by any third party due to or arising out of or in connection with your use or misuse of the Site or the Company Services (including, without, limitation, any use of your account, whether or not authorized by you), your breach of this Agreement, your violation of any rights of another or any content that you transmit through the Company Services.

 

Unsolicited Submissions

Company does not knowingly accept, via the Company Services or otherwise, unsolicited submissions including, without limitation, submissions by you of blog ideas, articles, scripts, story lines, fan fiction, characters, drawings, information, suggestions, proposals, ideas or concepts. Company requests that you do not make any unsolicited submissions. Any similarity between an unsolicited submission and any elements in any Company or Affiliated Company creative work including, without limitation, a film, series, story, title or concept would be purely coincidental. If you do send any submissions to Company via the Company Services that are unsolicited (including but not limited to any Forum), however, you agree that (i) your unsolicited submissions are not being made in confidence or trust and that by making such submissions no contractual or fiduciary relationship is created between you and Company; (ii) any such unsolicited submissions and copyright become the property of and will be owned by Company (and are not User Content licensed by you to Company under “Your Proprietary Rights in and License to Your User Content”) and may be used, copied, sublicensed, adapted, transmitted, distributed, publicly performed, published, displayed or deleted as Company sees fit; (iii) you are not entitled to any compensation, credit or notice whatsoever in connection with such submissions; and (iv) by sending an unsolicited submission you waive the right to make any claim against Company or Company Affiliates relating to any unsolicited submissions by you, including, without limitation, unfair competition, breach of implied contract or breach of confidentiality.

 

Other

The failure of Company to exercise or enforce any right or provision of this Agreement will not operate as a waiver of such right or provision. The Section titles in this Agreement are for convenience only and have no legal or contractual effect. This Agreement operates to the fullest extent permissible by law. Except as otherwise expressly provided herein, if any provision of this Agreement is unlawful, void or unenforceable, that provision is deemed severable from this Agreement and does not affect the validity and enforceability of any remaining provisions.

 

You agree that any notices the Company may be required by Applicable Law to send to you will be effective upon Company’s sending an e-mail message to the e-mail address you have on file with Company or publishing such notices on the informational page(s) of the Company Services.

 

You agree that no joint venture, partnership, employment, or agency relationship exists between you and Company as a result of this Agreement or your use of the Company Services. A printed version of this Agreement and of any notice related to it shall be admissible in judicial or administrative proceedings based upon or relating to this Agreement to the same extent as other business documents and records originally generated and maintained in printed form.

 

Nothing contained in this Agreement limits Company’s right to comply with governmental, court and law enforcement requests or requirements relating to your use of the Company Services or information provided to or gathered by us in connection with such use.

 

Please contact the Site Administrator at edswisconsin@gmail.com with any questions regarding this Agreement.

 

I HAVE READ THIS AGREEMENT AND AGREE TO ALL OF THE PROVISIONS CONTAINED ABOVE.

 

All materials contained in Site and Company Services are protected by copyright and trademark and shall not be used for any purpose whatsoever other than private, non-commercial viewing purposes. Reproduction, duplication, distribution, derivative works, and other unauthorized copying or use of stills, audio, video footage, or any other materials contained in Site or Company Services is expressly prohibited.

 

AUDITIONS: PRIVACY POLICY

 

  1. Introduction

 

This site (“Site”) is operated by EDS Wisconsin, Inc., to accept, process and administer online auditions (“Services”).

 

The Site and the Services (as defined below) are for a general audience, and are not targeted to children.  Site operators do not knowingly collect personal information from children under 13 years of age.

 

This Privacy Policy applies to all “users,” including both those who use some of the Services without being registered or subscribing to Services and those who have subscribed to one or more Service, and/or have registered with Us to create a profile and/or upload an online audition (collectively “Auditioner”). This Privacy Policy describes the collection and use of users’ personal information (e.g., information that identifies a specific person, such as full name or email address) where that information is not otherwise publicly available on the Services. EDS Wisconsin, Inc. also provides information on the Site’s Privacy Settings and describe generally the practices for handling non-personally identifiable information (e.g., interests, demographics and site usage) to the extent such information is associated with a particular user or user account.

 

  1. Submission and collection of information on the services

 

Registration Information is the information you submit to register for a Service, for example, to create an account, post comments, receive a newsletter, or enter a contest or sweepstakes. Registration Information may include, for example, name, email address, gender, and birthday.

 

Public Information and Posts consist of comments or content that you post to the Services and the information about you that accompanies those posts or content, which may include a name, user name, comments, likes, status, profile information and picture.

 

Information from Social Media. If you access or log-in to a Service through a social media or other service or connect a Service to a social media or other service, the information collected may also include your user ID and/or user name associated with that social media service, any information or content you have permitted the social media service to share with us, such as your profile picture, email address or friends lists, and any information you have made public in connection with that social media service. When you access the Services through social media services or when you connect a Service to social media services, you are authorizing EDS Wisconsin, Inc. to collect, store, and use such information and content in accordance with this Privacy Policy.

 

Activity Information. When you access and interact with the Services, EDS Wisconsin, Inc. may collect certain information about those visits. For example, in order to permit your connection to the Services, our servers receive and record information about your computer, device, and browser, including potentially your IP address, browser type, and other software or hardware information. If you access the Services from a mobile or other device, EDS Wisconsin, Inc. may collect a unique device identifier assigned to that device, geolocation data, or other transactional information for that device. At this time EDS Wisconsin, Inc. do not respond to browser ‘Do Not Track’ signals, as EDS Wisconsin, Inc. awaits the work of interested stakeholders and others to develop standards for how such signals should be interpreted.

 

Cookies and other tracking technologies (such as browser cookies, pixels, beacons, and Adobe Flash technology including cookies) are comprised of small bits of data that often include a de-identified or anonymous unique identifier. Websites, apps and other services send this data to your browser when you first request a web page and then store the data on your computer so the website, app or other service can access information when you make subsequent requests for pages from that service. These technologies may also be used to collect and store information about your usage of the Services, such as pages you have visited, content you have viewed, search queries you have run and advertisements you have seen.

 

Third parties that support the Services by serving advertisements or providing services, such as allowing you to share content or tracking aggregate Services usage statistics, may also use these technologies to collect similar information. EDS Wisconsin, Inc. does not control these third-party technologies and their use is governed by the privacy policies of third parties using such technologies. For more information about third-party advertising networks and similar entities that use these technologies, see www.aboutads.info/consumers, and to opt-out of such ad networks’ and services’ advertising practices, go to www.aboutads.info/choices.

 

Most browsers are initially set to accept cookies, but you can change your settings to notify you when a cookie is being set or updated, or to block cookies altogether. Please consult the “Help” section of your browser for more information. Users can manage the use of Flash technologies, with the Flash management tools available at Adobe’s website, see http://www.macromedia.com/support/documentation/en/flashplayer/help/settings_manager.html.. Please note that by blocking any or all cookies you may not have access to certain features, content or personalization available through the Services.

 

Information from Other Sources. EDS Wisconsin, Inc. may supplement the information EDS Wisconsin, Inc. collects with information from other sources, such as publicly available information from social media services, commercially available sources and information from Company Affiliates or business partners.

 

  1.   USE AND DISCLOSURE

 

EDS Wisconsin, Inc. uses the information EDS Wisconsin, Inc. collects from and about you to provide the Services and features to you, including: to measure and improve those Services and features; to improve your experience with both online and off-line Services by delivering content you will find relevant and interesting, including advertising and marketing messages; to allow you to comment on content, and participate in online games, contests, or rewards programs; to provide you with customer support and to respond to inquiries. When the information collected from or about you does not identify you as a specific person, EDS Wisconsin, Inc. may use that information for any purpose or share it with third parties, including the purposes below.

 

EDS Wisconsin, Inc. uses the information EDS Wisconsin, Inc. collect from and about you for these additional purposes:

 

To allow service providers to assist us in providing and managing the Services. EDS Wisconsin, Inc. may make your information available to certain third party service providers, such as contractors, agents or sponsors, who help us manage or provide the Services.

 

To allow social sharing functionality. If you log in with or connect a social media service account with Services, EDS Wisconsin, Inc. may share your information, including your user name, picture, and likes, as well as your activities and comments with other Services’ users and with your friends associated with your social media service. EDS Wisconsin, Inc. may also share the same information with the social media service provider. By logging in with or connecting your Services account with a social media service, you are authorizing us to share information EDS Wisconsin, Inc. collect from and about you with the social media service provider, other users and your friends and you understand that the social media service’s use of the shared information will be governed by the social media service’s privacy policy. If you do not want your personal information shared in this way, please do not connect your social media service account with your Services account and do not participate in social sharing on Services.

 

To provide co-branded services and features. EDS Wisconsin, Inc. may offer co-branded services or features, such as contests, sweepstakes or other promotions together with a third party (“Co-Branded Services”). These Co-Branded Services may be hosted on the Services or on the third party’s service. By virtue of these relationships, EDS Wisconsin, Inc. may share the information you submit in connection with the Co-Branded Service with the third party. The third party’s use of your information will be governed by the third party’s privacy policy.

 

To deliver relevant advertisements. EDS Wisconsin, Inc. and/or and our service providers may use the information EDS Wisconsin, Inc. collects from and about you to deliver relevant ads to you when you use the Services or another service. As noted above, third-party advertising networks and advertisers may use cookies and similar technologies to collect and track information such as demographic information, inferred interests, aggregated information, and activity to assist them in delivering advertising that is more relevant to your interests. To find out more about third-party advertising networks and similar entities that use these technologies, see www.aboutads.info, and to opt-out of such advertising networks’ and services’ advertising practices, go to www.aboutads.info/choices.

 

To contact you. EDS Wisconsin, Inc. may periodically send promotional materials or notifications related to the Services. If you want to stop receiving promotional materials, follow the unsubscribe instructions at the bottom of each email. There are certain service notification emails that you may not opt-out of, such as notifications of changes to the Services or policies. If you have installed a mobile app and you wish to stop receiving push notifications, you can change the settings either on your mobile device or through the app.

 

To share with our Company Affiliates. EDS Wisconsin, Inc. may share your information with companies with affiliated for the purposes described in this Privacy Policy. Users who visit these affiliated company services should still refer to their separate privacy policies, which may differ in some respects from this Privacy Policy.

 

To share with business partners. EDS Wisconsin, Inc. may share your information with business partners to permit them to send you marketing communications consistent with your choices.

 

To protect the rights of EDS Wisconsin, Inc. and others. There may be instances when EDS Wisconsin, Inc. may disclose your information, including situations where EDS Wisconsin, Inc. have a good faith belief that such disclosure is necessary in order to: (i) protect, enforce, or defend the legal rights, privacy, safety, or property of EDS Wisconsin, Inc., our Company Affiliates or their employees, agents and contractors (including enforcement of our agreements and our terms of use); (ii) protect the safety, privacy, and security of users of the Services or members of the public; (iii) protect against fraud or for risk management purposes; (iv) comply with the law or legal process; or (v) respond to requests from public and government authorities.

 

To complete a merger or sale of assets. If EDS Wisconsin, Inc. sell all or part of our business or make a sale or transfer of our assets or are otherwise involved in a merger or transfer of all or a material part of our business, EDS Wisconsin, Inc. may transfer your information to the party or parties involved in the transaction as part of that transaction.

 

  1.   SECURITY

 

EDS Wisconsin, Inc. uses reasonable administrative, technical, personnel and physical measures to safeguard information in its possession against loss, theft and unauthorized use, disclosure or modification. However, no one can guarantee the complete safety of your information. If you are asked to select a password to access a Service, you should select a password that contains a combination of letters, numbers and non-alphanumeric characters (for example, %, $ and &) and avoid dictionary words. In addition, you should not use the same password that you use for other business or personal accounts.

 

  1. USER ACCESS AND CONTROL

 

If you no longer want to use the Services, please send an email to edswisconsin@gmail.com. You may unsubscribe to newsletters by clicking the “unsubscribe” link at the bottom of the newsletter email.

 

  1.   OTHER IMPORTANT INFORMATION

 

Updates to Privacy Policy. EDS Wisconsin, Inc. may modify this Privacy Policy. Please look at the Effective Date at the top of this Privacy Policy to see when this Privacy Policy was last revised. Any changes to this Privacy Policy will become effective when EDS Wisconsin, Inc. post the revised Privacy Policy on the Services.

 

Location of Data. The Services are hosted in and managed from the United States. If you are a user located outside the United States, you understand and consent to having any personal information processed in the United States. United States data protection and other relevant laws may not be the same as those in your jurisdiction. This includes the use of cookies and other tracking technologies as described above. As a result, please read this Privacy Policy with care.

 

Linked Services. The Services may also be linked to sites operated by unaffiliated companies, and may carry advertisements or offer content, functionality, games, rewards programs, newsletters, contests or sweepstakes, or applications developed and maintained by unaffiliated companies. EDS Wisconsin, Inc. is not responsible for the privacy practices of unaffiliated companies, and once you leave the Services or click an advertisement you should check the applicable privacy policy of the other service.

 

Data Retention. EDS Wisconsin, Inc. will retain your information for the period necessary to fulfill the purposes outlined in this Privacy Policy unless a longer retention period is required or allowed by law.

 

Remember that even after you cancel your account, copies of some information from your account may remain viewable in some circumstances where, for example, you have shared information with social media or other services. Because of the nature of caching technology, your account may not be instantly inaccessible to others. EDS Wisconsin, Inc. may also retain backup information related to your account on our servers for some time after cancellation for fraud detection or to comply with applicable law or our internal security policies. It is not always possible to completely remove or delete all of your information due to technical constraints, contractual, financial or legal requirements.

 

Sensitive Information. EDS Wisconsin, Inc. asks that you not send us, and you not disclose, any sensitive personal information (such as social security numbers, information related to racial or ethnic origin, political opinions, religion or other beliefs, health, criminal background or trade union membership) on or through the Services or otherwise.

A great friend I met through EDS Wisconsin asked me today if I’ve ever written about how it feels to never really “be able” to have an emergency. If you’re reading this and you don’t have EDS, you probably are wondering what we mean. For example, if we had a gaping head wound and were taken by ambulance to the local emergency room, of course we would be having an emergency—so how exactly can we say we are not “able” to have an emergency?

Here’s the thing about life with a condition like EDS. A normal day for us can often include symptoms severe enough, if we were healthy, someone from our family would probably put us in the backseat of a car surrounded by pillows and take us to the hospital for immediate attention. Just yesterday, as I was playing with my two dogs, who you both know I love as much as just about anything in the world, I dislocated a shoulder. I heard it before I felt it, because I have grown so accustomed to this particular joint moving. I went to my bathroom and moved my body around enough to put it as close to the right location as I could. I had already taken the dose of painkillers I was allowed to take for the afternoon with my NSAIDS, so aside from the bag of frozen mixed vegetables I grabbed from the freezer for some icing, there really was not anything else I was able to do.

They’re skeptical of photos before cake, but they’re still worth a rough game of fetch.

Here is what would have happened had I gone to the emergency room. First, I would have had to explain to every person who came into the room that I have EDS, usually spelling it out for them. Last time I was in the emergency room, the DOCTOR (yes, a physician, an MD), said to me, “You have Maylers-Danyos Syndrome? That’s a new one. I’ve never heard of that.” I was in tremendous pain from what turned out to be a severe kidney infection (which took two more trips to the ER to get diagnosed, but I digress), so I thought perhaps in a state of pain, I hadn’t annunciated well. I annunciated and spelled out, “E-H-L-E-R-S…” and so on. He still had no idea what I was talking about. Next, they would have taken an x-ray of my shoulder. By this point, I would have relocated it well enough for it not to show on the x-ray. Because they’ve never heard of EDS, they would tell me it is unlikely I even dislocated it in the first place. They would offer me a higher dose of ibuprofen (yes, no actual painkillers) and advise me I may have pulled some muscles in the area. Usually at this point they say something like, “If you have this rare condition, you are probably seeing a specialist, so if you have a problem, follow up with them.” It has usually been hours by now, because I was triaged long after the screaming baby and the people with conditions they have heard of. My husband has drained his phone battery from playing games and trying to entertain me through the pain. Then, we’ll get another bill from another trip to another doctor who didn’t help me.

The last time I was in the ER multiple times, it took a routine visit to my pain management specialist for him to realize how truly sick I was. By this point, my fever was maintaining at 103-104 for more than  three weeks, but I had been given oral antibiotics with no culture for a kidney infection on my second trip after being told on my first visit that my extreme abdominal pain was caused by an ovarian cyst (that had not burst) smaller than the width of a dime. I was no longer in my hometown and in a system more equipped to handle my condition, but I only felt safe, because he called the ER. He walked them through both of the conditions I have. Aside from EDS, I have a rare metabolic bone disorder called Hypophosphatasia that leaves me incredibly susceptible to infection due to poor creation of white blood cells. Without an appropriate culture of my infection, it was extremely unlikely the antibiotics would be effective. I typically get 10-15 bacterial infections each year requiring antibiotics. My doctor told me if I did not agree to go to the ER, he would call the ambulance to take me because I was tachycardic from this infection and fever. I required significant amounts of fluids from dehydration and IV antibiotics, in addition to beginning a course of oral antibiotics to follow up on the infection. Without those specific instructions from a physician, it is likely I would have had the same experience. I am blessed to be articulate and skilled at advocating for myself and yet, I still do not have the same experiences in emergency rooms and urgent care as those without my conditions, because doctors simply are unprepared to handle someone as complex as me.

This post is for every EDS patient who has ever had a severe injury and decided a trip to the ER would be a waste of time and money for no reason but the lack of understanding. This post is a reminder why so many of us are fighting to educate physicians about EDS. This is for the parents sitting next to their children in those emergency rooms who do not yet have a diagnosis who end up separated from their babies, so someone can ask if they feel safe at home. It is better now than it was when I was a child and I believe the work we are doing today will mean it will be even better when your children are adults. This doesn’t make it fair or easy, but it does make the effort worth it.

You are not alone. We are all in this together.

I am a day late, but hopefully still worth the read. We have just wrapped the end of EDS Awareness Month and throughout it, so many wonderful things happened–especially as EDS Wisconsin launched #KnowEDS, an opportunity for us to educate our communities, the state, the country, and maybe even the world on the Ehlers-Danlos syndromes. I’m not here to write about the campaign, though, even though it is the most important thing we are doing right now. I am here to write about all of the thank you messages we should be sending after EDS Awareness Month. These are the people who have made and will continue to make living with EDS better and in particularly severe cases, POSSIBLE.

  • To our parents: thank you for raising children fighting a battle you often did not even have a name for. Thank you for taking us to appointment after appointment and never giving up on a diagnosis. Thank you for staying up with us when we were crying from the pain our doctors told you were just growing pains even when we sobbed a lot more than you believed growing pains should cause. Thank you for never giving up on us. Thank you for believing we can do anything even with challenges and for showing up to all the events to raise awareness. Thank you for telling your friends about EDS and explaining to the family members who do not understand why your child or children is in constant pain, telling them it is real, making them believe us. We would not and could not be here without you.

    My Mom

  • To those EDS patients we have lost: I have already written about your losses and what they mean to us, how they affect us all, but I want to reiterate what that means. You are so much of the reason so many of us are working as hard as we are. We will take your loss and use it for education. You are not truly lost, because your message is living on through all of us. We are carrying you in our hearts and through our words. You were brave and strong in life and your educational message makes other brave and strong in their lives.
  • To the doctors who fight for us: Thank you for believing us. Thank you for learning about things if you do not already know when we present with symptoms. Thank you for talking to your colleagues and educating them about a condition that makes our lives incredibly challenging. Your fight for proper medication, proper treatment, and proper access to everything we need–that gives us hope–and for some of us, hope is all we have.
  • To our non-EDS friends: Thank you for being there even when you don’t understand. Thank you for trying to understand. Thank you for showing up. Thank you for understanding when we cancel plans or relocating those plans so we can stay on the couch. We need you so much. Thank you for not being upset when we are sometimes envious you don’t have EDS. Thank for knowing that doesn’t mean we don’t love you or need you. It just means we are human and sometimes we wish we had a different life without the stresses we have and you love us enough not to hate us for that–and that makes you incredible.
  • To our EDS activists: Thank you for beginning this revolution before some of us even knew we had EDS. You have changed medicine. You have changed lives. You have inspired us to write and speak and lead and educate.
  • To the children with EDS: Thank you for being brave. You are so strong. You cannot possibly know how strong you are. We all do, because we were you and now when we look back, we realize what it took to survive our childhood. It affected our mental health to be in pain all the time. It affected us not to be able to do what our friends did. Please know that you are very fortunate to have a diagnosis and it will change your entire life versus what happened to us. It won’t cure you. You will still struggle and that is still scary, but your monster has a name and your parents are educated allies we wish we could have had. When you need us, any of us, any time, we are here. We will listen. You are not alone. Not ever.

    EDS Kids

  • To our therapists: Thank you for reminding us that even though our pain is real, it affects our mental health. Mental health is as important as physical health. Thank you for helping us know that. I will never forget when I told my therapist I worried my pain was all in my head and he said “Of course it is. That’s where you feel pain. That doesn’t make it fake.” You are a critical part of our care team. We need you as much as we need any other physician.
  • To our spouses and partners: Thank you for never seeing us as a list of conditions. Thank you for loving who we are as human beings. We need you to help us fight this battle. Most of us didn’t know if we would ever find someone who could handle what was happening to our bodies. When we did, it was life-changing. You are sometimes in more pain than us because you love us so much, our pain makes you hurt. We know you hurt. We know you wish you could move our pain to you and that means a lot more than you know. Thank you for wishing that. Thank you for being that. You are the strength we need on the days we do not have it.
  • To every EDS patient: Thank you for being you and being strong. Remember how many people love and support you. Remember there is hope. Remember you are not alone. Remember so many of us are fighting this battle by your side and we will be there to get you help when or if you need it. Thank you for opening yourself enough to share your struggles. That alone makes you far stronger than you can even imagine. Thank you for being a warrior. We are proud of you.

I am sure there are so many more people I could thank here, but for now, these are the folks I think most important to acknowledge. Please know what it means for you to be in our lives. We love and appreciate you all.

We are strong, but only because we do not fight alone.

 

It’s funny whenever I find myself taking a break from writing, it’s usually because I’m doing the same thing to blog readers as I do to those in my own life–pretending everything is going so well I don’t have anything to say. If any of you know me in real life, the idea of me having nothing to say is, in itself, hilarious. Yet, here I sit, at my desk, in my wheelchair, a dog on my lap, a TENS machine at its highest power attached to my back and I’m still not really sure how to write this blog post.

Essex likes to be cozy

In the world of chronic illness and chronic pain, we all learn to tell healthy and able-bodied people we’re doing “fine” pretty much all the time. We do this for a variety of reasons, including, but not limited to:

  • Our medical conditions are complicated and explaining what is going on would take longer than anyone wants to spend on hearing how we’re doing
  • People generally don’t want to hear when things are getting worse
  • Pity isn’t something we thrive on and we know at some point, it runs out
  • Many people just simply aren’t sure how to react to hearing how we’re doing

I’ve been telling even myself I’m “fine” for the better part of the last several months, even as I fought off a severe infection that required multiple emergency room visits in which physicians did not understand my condition and in which I was time and time again not given the necessary antibiotics to fight the infection. I woke up one morning with a fever of 104 degrees, feeling like I was naked on an iceberg, and shaking so hard I couldn’t even type out a message on my phone. That day was our second trip to the emergency room. Even then, I didn’t get IV antibiotics.

I didn’t get them until the doctor who generally treats the pain caused by my EDS saw me for a regular appointment and realized how incredibly sick I still was even after 9 days on antibiotics. I was tachycardic. I had a fever. My kidneys were so infected the pain in my back was far more severe than even on a normal day. As he looked me over, he called the emergency room down the street and instructed them on my condition, telling them exactly how serious this was.

He also looked at all the blood work from all my previous ER trips…and then from all my trips to all the doctors over the last six years, which is when he noticed a commonality. I had alarmingly low levels of a necessary enzyme in my blood consistently for six years. These levels had been flagged in my blood work every time it had been drawn for all these years and are indicative of a condition found in 1 in 100,000-300,000 people. It is a metabolic bone disorder that cause almost all of the things he and I had been trying to figure out for years. You see, I have incredibly curved long bones in my legs. I developed scoliosis in adulthood. I lost my baby teeth before preschool. My pain responds to almost nothing. These are all MAJOR indicators of Hypophosphotasia, marked by these clinical symptoms, and below normal levels of alkaline phosphotase in the blood. He was the first doctor to notice this. Normally, in his words, because it is even less known than EDS, they look only for extremely high levels of ALP, a marker for kidney failure.

He immediately consulted genetics as I was sent to the emergency room for treatment for the infection, which is now finally gone. I received a message the following Sunday night from him (seriously, he is THAT dedicated a physician) letting me know genetics agreed with him that it is extremely likely I have this condition and would be contacting me. Genetics says it is either this condition or another metabolic bone disorder, but by some stroke of luck, a company offers free testing for this condition, so currently, my spit is at a lab after my husband mailed it for me, because I was just too anxious.

How have I handled all of this? Well, I stopped using my mobility aids and have been acting like I’m a completely healthy and able-bodied person through incredible amounts of pain. I have tried to convince myself it’s not possible I have another condition doctors missed for years, especially one that was IN MY BLOODWORK by acting healthy and “fine.” That caught up to me today, in the middle of a grocery store aisle when I dropped something on the ground and realized I couldn’t bend far enough to pick it up. By the time I got home, I could barely leave the couch and had to use my wheelchair the rest of the day, mostly through tears and anger.

I’ve resolved to accept my reality no matter what it is. In fact, it could be good news to know exactly what is going on with my body and why I have had these struggles that do not necessarily line up specifically with EDS. I’ve also resolved to stop saying I’m fine when I’m not. I’ve resolved to stop trying to convince myself I’m fine when I’m not.

It’s a REALLY good idea to work on your mindset. You can work towards a positive attitude. You cannot trick your body in to having different DNA than it does. Sometimes, like I have written before, accepting your limits is okay. Sometimes, when someone asks how you are doing, it’s okay to say, “I’m in a lot of pain today, but my husband and I had a great dinner date last night” or “Thank you so much for asking; I’ve been having a really hard time with my health lately and I need someone to talk to.”

So, I’m not fine, but by accepting that, I think I will be much sooner.

This morning, just after midnight, we lost a member of our EDS Wisconsin dazzle. If you’re new to reading the blog or unfamiliar with groups of EDS patients, we call ourselves a dazzle, because a group of zebras is called a dazzle and we are called zebras.

Since I got this message on my drive to the office this morning, I haven’t known exactly what to say except that we needed to say something. As the writer of the group, I’m often asked what we should say when something like this happens. I’ve been told since I was a little kid my power over words was impressive, it could help people, it could change things.

The problem is, there aren’t words that make this any better. I cannot write anything in this blog that will take any of the sting away from losing a beautiful young woman at only 30 years old. Nobody wants to admit their selfishness when someone else’s life is gone, but in the moment, the immediate moment I heard she’d passed, all I could think was, “that’s only two years older than me” and I cried to myself in my car as I drove the rest of the way to the office. I cried for her, imagining the pain she had in those final days. I cried more for her family and friends, because at least in my belief system, she is at peace now–something she struggled to find due to the complications. Finally, in the most horrifically selfish admission, I cried for myself. I cried thinking about my absolute terror at the idea something related to having EDS could mean I only get two more years with my husband and my dogs–I cried more later when I read her obituary and about how much she adored her dog, because it was another trait we share. I cried because some days I am just so tired of people I know and love hurting and feeling like nothing I ever do is going to be enough.

I don’t want to write this blog as though she and I are close personal friends. It would be a disservice to her memory. We interacted online as so many do in the EDS community. I remember finding her faith comforting because I share that faith. I remember wondering if I could help and how. I wonder that to myself all the time, usually when I’m feeling like I’m not doing enough, because we lose EDS patients in the world every single day.

I think when you exist in a chronic illness community the way so many of us do, we find a way to connect to people. We feel like they are part of our families no matter how little time we spend with them, because in some cases, their DNA is more similar than the people we are actually related to us. They share our experiences. They share our struggles. They understand our emotional and physical pain and sometimes, they are the best sounding board for us. So, when we lose a member of our chronic illness family, we grieve them, because grief is human and we might be chronically ill, but we are human.

There aren’t words to adequately express grief. Grief is too complicated to be put in to words, but pretending we don’t feel grief is not healthy. Pretending losing a young, beautiful woman with EDS doesn’t also terrify us is not healthy. Accepting the truth about this grieving process means we don’t delay too long what is truly important–fighting for the people we have lost–and I believe at the end of the day, every single EDS patient we’ve lost would want that from us. They would want us to brainstorm ways to help their doctors be more informed. They would want us to get together and remember fond memories about them while also discussing how to teach patients who share their condition to advocate for themselves because in their passing we found a passion for even more advocacy. They would want to help patients with their passing, I truly believe that.

I hate the saying “she lost her fight with [fill in the blank disease]” because it is absolute nonsense. No human being has ever lost a battle against a disease. Instead, they found peace from it. Whether it’s EDS, Cancer, Parkinson’s, or any other condition, I refuse to ever treat another human being as having been too weak to win. Living with these conditions for any length of time is victory. Impacting the world is victory. When peace comes to our victorious friends, we will take the torch and we will keep fighting, because we will never let someone pass in vain. We will continue our work and we will continue our fight and we will remember that we cannot lose, either.

And then we will cry, because we lost a member of our family today and it’s normal to cry when you lose someone in your family.

Thank you for reading my words while you were here, Lisa. Thank you for loving dogs like I do. Thank you for fighting this battle alongside me. Thank you for allowing us to continue your fight. We will not stop. I’ll give my dogs an extra squeeze for you tonight. You won.

Lisa and l shared a deep love for our dogs. Here is my littlest baby, who has gotten lots of love since we lost our zebra friend.

Today is the International Day of the Zebra. If you have EDS or follow those who have EDS closely, you probably know we identify with the zebra. This stems from the major issue we have getting diagnosed due to our symptoms mimicking SO MANY other, more common, less serious conditions and an old adage taught in medical school:

“When you hear hoof beats, think horses–NOT zebras.”

The problem is zebras exist, they have hoof beats, and they need to be seen. They need to be diagnosed. BUT, that’s not the point of my blog today. If you are reading this blog or follow this website, you already know that. What I’m writing in this blog is more about the issue that stems from this condition and the way it presents.

Here is a short, not complete list of the symptoms of EDS (Source: ehlers-danlos.com/The Ehlers-Danlos Society):

Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis

Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

In addition to having EDS, many EDS patients have additional conditions called comorbid conditions. Here are just a few you might encounter:

Mast Cell Activation Disorder
Gastroparesis
Postural Orthostatic Tachycardic Syndrome (POTS)
Chronic Fatigue
Anxiety
Sleep Disorders
Cervico-cranial instability

So, if you’ve recently been diagnosed with EDS, you have a LOT to look forward to (I need to get a sarcasm font, because I use sarcasm A LOT and it’s hard to tell, but in this case, this is obvious sarcasm). My sister was diagnosed this past summer. We were very expectant of this diagnosis shortly after my diagnosis, but very similarly to me, about her mid-20’s, she has had an onset of symptom after symptom. Just like most EDS patients, she is now navigating a sea of doctors–some of whom know A LOT about EDS and some of whom know very little about EDS.

Two Zebras

Like most EDS patients, she will have to see many doctors yet to determine which of the other conditions she has. She lives all the way on the East Coast, so I can’t help her find doctors or be as much of a resource as I’d like.I don’t like to think about it, actually. I wanted to be the only one of my siblings with it–not because I wanted to spotlight, but because I know how truly challenging this condition can be.

AND STILL, my own sister, who has the SAME connective tissue condition I do, looks nothing like me when you see us side-by-side medically. While we both have chronic pain, it is in different areas and in different severity for each of us. She has major issues with her hands and fingers that make it challenging for her to work with a computer; I am fortunate to still have lesser damage in this area. I use a wheelchair more of the time than I am ambulatory; she is not yet using any mobility device. We share some symptoms like chronic migraines and anxiety, but still, at the end of the day, aside from the things that lead to a diagnosis, we do NOT look exactly the same in our EDS battle.

The Ehlers-Danlos Society released a video today. You can find it <a href=”http://”>HERE.
While the video itself is great, there was one quote that stuck out to me.
“No two zebras have identical stripes.”

I have noticed a tendency among those with this condition to worry too much about where they fall in terms of their severity and whether or not they “count” when it comes to our community. Working together to understand the symptoms we share and the resources available is helpful. Determining whether or not someone else’s pain is valid based on a scale of your own symptoms benefits nobody. If you feel you are less severe than another patient, you are valid. If you feel you are more severe than another patient, THEY are still valid. Most importantly, remember that we are all more than patients; we are human beings–and that matters more than any of the rest of it.

Since my diagnosis, some of my symptoms have improved thanks to intervention. I understand what POTS is and in general, I can keep it in check well enough it does not affect my daily life as much as it is before I even knew it was a real condition. Other parts of my condition have gotten dramatically worse. My spine is more curved than ever and I now use a wheelchair much of the time due to the irreversible damage to my spine and legs. I now have to park in handicap spaces and worry about judgment from others when I don’t use my chair. If you are a child newly diagnosed whose symptoms are much less mild than mine due to your age and early intervention, don’t feel less valid–feel grateful that people are beginning to listen and understand and diagnose. Early intervention is absolutely the key to staying on top of how much EDS damages our joints.

Let’s all love each other regardless of what our stripes look like. Let’s help each other no matter what symptoms we see or know or share. Let’s understand that EDS is a condition that exists on a wide spectrum and affects people differently, but what we know without question is that coping with the reality that there is currently no cure is MUCH easier when we have others in our life who understand that same need to accept reality.

Love a zebra today. Love a zebra every day, really. We could use it.

Also, Two Zebras

If you have a chronic pain condition, you probably know just how much work it is to exist. I read one of those internet memes the other day that had me thinking. It said something like,

“No, you’re wrong. I’m not faking being sick. I’m faking being well.”

It made me laugh for a second. If you have EDS and have ever parked in a handicapped parking space without needing a wheelchair, you have probably had at least one person tell you not to park there. I have been accused by multiple people of seeking attention or pretending things are worse than they really are.

After I laughed, though, I started crying. You see, my pain has been absolutely out of control lately. I started a new job just under two months ago and my doctors and I already decided I can’t physically handle it. I have pushed myself every single day to get to my office and do my work, smiling and greeting people through pain, all the while my medications getting less and less effective and my wheelchair becoming more and more necessary. I used to come home after work at night and be able to enjoy myself. Now, less than six months in to my marriage, I find myself coming home from work and wanting to do nothing but lay in bed and watch TV because my body hurts so much. I work primarily in an office. I sit primarily behind a desk. Most people who see my at my job would never even guess that I get home and often choke back tears asking my husband to work knots out of my muscles and then cry as he has to push on the really painful spots because that’s the only way to get rid of them.

I quit my job. It broke my heart. I am not someone who quits a job after two months, but I know I cannot do it and I need to accept that, but I am still overcome with guilt thinking of what inconvenience I have caused others. I am someone guilty of measuring my value by my productivity and I do not feel productive.

I was back home over this past weekend for a family funeral. We lost a wonderful man. It was absolutely devastating–and the first time my extended family really saw me in my wheelchair. It was the first time my parents saw what happens to me after a full day of activity now. It was the first time people close to me realized how truly exhausting it is just to exist in a body that doesn’t work right. Between the emotional and physical pain, I am still tired almost a week later.

Why am I writing this post that seems like me just whining about how hard it’s been to be me lately (even though I promise you I actually do like being me)?

Because it can be lonely here and it should not have to be.

I am making a conscious choice to share these massive struggles with you, because I’ve read the struggles of others lately and I do not want them to feel alone. I want to remind the world that just because someone has pretty makeup on and a cute outfit doesn’t mean they aren’t in incredible pain–in fact, that makeup and clothing might be their best effort to hide it. I want the others who are currently in pain that feels out of control to know there are others who are laying in bed wishing they could go do something and feeling guilty for holding others back.

I am 28 years old and I cried on my mother’s lap this weekend about wishing I had a normal body.

Kids with EDS feel that way, too. They need to know it’s okay to feel that way sometimes. They need to know not to live there. They need to know sadness and grief over their condition is natural, but isolation is dangerous. They need to cry to a parent or a friend instead of hiding their pain until they cannot bear it anymore. We lose chronic pain patients to suicide because their mental health becomes too great a burden as they wish and hope for a “normal body” and have no outlet for those emotions.

I have made many mistakes in the last few months. I have overlooked the struggles of others while enduring my own. We must all work to see pain in ourselves and pain in others. We must avoid the loneliness and isolation of chronic pain and chronic illness. We must allow our emotions to have an outlet before they take control. When you lose another thing in your life because of this crappy condition, you are allowed to be angry. You are allowed to be sad. Your life, though, it is still beautiful. You are still wonderful. I think you will find in recognizing others’ pain, you may find relief and comfort for yours.

I may not be able to do the jobs I hoped I could do. I had dreams I can no longer achieve due to my physical limitations, but I also have new dreams I wouldn’t have if I didn’t have EDS. I’m going to work on those for a while. I’m going to remind myself of all the beautiful people in the world who don’t care if I look pretty and say I hurt; they believe me anyway (and want to know the name of my eyeshadow palette so they can look pretty through the pain, too).

Remember: I am here. We are here. Stay here.

Together we are stronger!