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ChroniCarly http://blog.chronicarly.com exploring chronic illness Mon, 09 Jan 2017 22:07:59 +0000 en-US hourly 1 https://wordpress.org/?v=4.2.20 Tips for getting involved in political activism http://blog.chronicarly.com/tips-for-getting-involved-in-political-activism/ http://blog.chronicarly.com/tips-for-getting-involved-in-political-activism/#comments Wed, 16 Nov 2016 16:15:38 +0000 http://blog.chronicarly.com/?p=602 It is a stressful, scary time for many of us Americans with disabilities and chronic medical conditions. My intention is not to engage in fear mongering or hyperbole. No matter what happens with the new political administration, an important part of democracy is participation. I have done political advocacy on behalf of people with chronic [...]]]> It is a stressful, scary time for many of us Americans with disabilities and chronic medical conditions. My intention is not to engage in fear mongering or hyperbole. No matter what happens with the new political administration, an important part of democracy is participation. I have done political advocacy on behalf of people with chronic illness for several years. Many people have asked me for advice about how to get involved and best voice their concerns about how the nation should be run.

I expect to post additional resources soon, but here is part one.

Tips for speaking with your congressperson:
No matter the venue be clear and succinct. Anyone can request a meeting, and some congresspeople even have an online form. The meeting date might be several months in the future, so this might not be the best way if you are commenting on a specific bill that is up for a vote soon. Your representative and Senators will have local offices in their home state, so don’t think you have to come all the way to DC. If you can’t meet in person, we are hearing that a phone call is the next best action. Currently many offices are facing a large volume of calls, but stick with it until you get through. Leaving a voice mail with you ask if acceptable, too. Finally, you can also send an email. You can use a form letter but it is best to customize it. Doing any of these things is better than doing nothing, which is the current most common response.

You will likely receive a form letter in response. Don’t let this discourage you. A large volume of calls and emails about a single issue makes members of Congress pay attention. It is important to let them know how the people who voted them into office (or who can vote them out next cycle) feel about the issues. Elected officials exist to represent their constituents, no matter what political party they belong to.

If you are able to meet in person, you will likely have about 15-30 minutes. Depending on time allowed, pick one or a few specific issues. Thank them for taking the time, explain who you are and why you are there (the issue or even better the bill you want them to support – if you know the bill number and the sponsors including that is VERY helpful. Tell a short story that is personal but keep it professional (like no cursing, don’t be overly dramatic) and use figures/stats if possible (how much medicine costs, how many days of work you miss). Repeat the ask again (“So I hope I can count on you to support house bill XXY.”). Provide your contact info and a link or info to a place for more info on the issue if relevant (lupus foundation?). It is a great idea to have a short handout (1 page is ideal) with this information. You can use this to help you remember your points, and leave a copy behind for the staffer or Congressperson. Lastly, thank them for their time and tell them you will follow up on any questions that came up.
Within the week, follow up with an email thanking, repeating the ask, and linking to the info.

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High Drug Costs Forced Me to Sell My Home http://blog.chronicarly.com/high-drug-costs-forced-me-to-sell-my-home/ http://blog.chronicarly.com/high-drug-costs-forced-me-to-sell-my-home/#comments Thu, 03 Nov 2016 19:22:45 +0000 http://blog.chronicarly.com/?p=600 This week, the Morning Consult published a piece I wrote about being forced to sell* my home to pay for health care while unemployed.

* the house sold for about half of what I owed on it, so it was a short sale that wrecked my credit for a few years and left me homeless.

You can read [...]]]> This week, the Morning Consult published a piece I wrote about being forced to sell* my home to pay for health care while unemployed.

* the house sold for about half of what I owed on it, so it was a short sale that wrecked my credit for a few years and left me homeless.

You can read the full here:

High Drug Costs Forced Me to Sell My Home

The archives of this site have a few additional posts I wrote during the process of selling my house.

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Book Review: League of Mortals http://blog.chronicarly.com/book-review-league-of-mortals/ http://blog.chronicarly.com/book-review-league-of-mortals/#comments Mon, 06 Jul 2015 10:00:39 +0000 http://blog.chronicarly.com/?p=563

Disclosure: Duncan Cross provided me with a complementary copy of his book. I was not under any obligation to write a review. Product links in this post are for my Amazon Affiliate account.

 

My summer reading has a definite (unintentional) theme: books written by, or heavily featuring people I know. I joke [...]]]> League of Mortals Book Cover

Disclosure: Duncan Cross provided me with a complementary copy of his book. I was not under any obligation to write a review. Product links in this post are for my Amazon Affiliate account.


 

My summer reading has a definite (unintentional) theme: books written by, or heavily featuring people I know. I joke that because of my odd hobby of patient advocacy, most of my friends are now other patients or regular health conference attendees. Even a few formerly “healthy” friends have been getting autoimmune diagnoses lately. So now my bookshelf is following the trend, it seems.

I recently read Regina Holliday’s compelling memoir The Writing on the Wall. Then on the way home from her conference, Cinderblocks2, I listened to the audiobook version of In the Kingdom of the Sick, by Laurie Edwards. Duncan Cross features heavily in this book – subtitled “A Social History of Chronic Illness in America.”

Cross (a nom de plume) was diagnosed with Crohn’s disease as a teenager and has been blogging at DuncanCross.net since 2008. He’s published a novelization of his early experiences with the diagnosis and illness titled League of Mortals. Cross explains that turning the story into a novel made for a more interesting and cohesive experience for readers, and allowed him liberty to fill in gaps in memory (I certainly would not have remembered all the dialogue from my diagnosis 21 years ago). He also claims that the field of illness novels is relatively barren, compared to the piles of memoirs chronicling personal health journeys. And that’s the thing; personal health rarely unfolds in a linear fashion most adaptable to narrative structure.

League of Mortals follows main character Wesley during his final year of high school. Wesley is a fairly typical American teenager: living in Florida he swims and surfs but is not a jock, he gets good grades in advanced classes, but is not an overly dedicated student, he attends church with his parents, but is mainly interested in meeting girls at his youth group. Wesley has a good number of friends, but becomes increasingly isolated as his illness progresses. The story plots the course of Wesley’s disease from first onset of symptoms to original diagnosis, to refining of that diagnosis, and finally working out the treatments that will help him best. Wesley spends much of the book overcome by malaise and acting out, the cause of which is eventually explained for the benefit of those who have not been through the same experience.

I’ve been reading Cross’s blog semi-regularly for a while now, but only just met him in person a few months ago. When I agreed to read the book, I asked Cross if he would stop being my friend if I didn’t like his book. (I’ve declined to read another friend’s self-published book about his experience with drug and alcohol addition.) Reading this novel was difficult for me. Cross is clear that he has a sort of twisted sense of humor – the novel uses some mature language and has several scenes involving masturbation or other sexual acts you might expect from a story about a high school boy.

Here’s a disclaimer about the book from the author’s website:

Note: because League of Mortals is above all honest, it contains scenes that may upset or offend some readers – including bathroom scenes, adult content, medical procedures, mild violence, and extremely dark comedy. While the content may be appropriate for late teen readers, League of Mortals not intended for young adults, and young readers will benefit from parental guidance.

That’s not why I had trouble stomaching the book. No, I found the book triggering. That is to say, reading during my daily Metro commute was difficult because of the many graphically realistic scenes of main character Wesley having stomach cramps and diarrhea.

If you don’t know much about Crohn’s disease or IBD you may assume it’s all about diarrhea, but in fact there are many other symptoms. In my case, I never had a problem with pooping until after my fourth (and final, so far) surgery in 2005. As a teen I was first hit with crushing, tear-enduing fatigue, then severe stomach cramps that left my curled up on the floor, and eventually extreme vomiting. You may be surprised to learn how much more socially acceptable and easily managed vomiting is compared to diarrhea. It wasn’t until this last symptom started that I began to experience anxiety about my condition, or stress about being away from a bathroom.

In fact, the book features a scene where Wesley and his friend visit Washington DC and ride the Metro. Wesley panics when he can’t find the bathroom (although, spoiler alert, he does okay on that trip), but is eventually told by a doctor that they do, in fact, have hidden facilities that the station master can let customers use, if they feel so inclined. Most tourists don’t know about this, and many people in a hurry can’t wait for a Metro employee to escort them.

I am very interested to hear how healthy people review this book. From my perspective as a fellow “sick kid,” it is a very accurate portrayal of illness. I wonder how the scenes of illness strike readers who have not lived through these things. Is there a market for stories like this? Do people want to understand on such an intimate level what Crohn’s disease is like?

Cross makes it clear that he disdains the limited literary tropes for illness. His character Wesley is not a saint, he is not redeemed through his illness, he does not die in the end so his organs can save his girlfriend, nor does his life serve as the inspiration for national health care policy reform. He’s an average guy who has a pretty crappy year and then learns to get on with his life as best as he can. He uses dark humor to cope and does not have much sympathy for people who try to mold him into inspiration porn. In this way, the book offers the most realistic depiction of the first year of chronic illness that I can remember reading.

Cross has a handy page of his blog explaining the many different ways to purchase League of Mortals.

Coupon code! The book is already a reasonable $4.99, but Cross agreed to offer readers a further discount. Use code JD87E good through July 20, 2015 for $2 off a download from Smashwords.

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MedCity ENGAGE http://blog.chronicarly.com/medcity-engage/ http://blog.chronicarly.com/medcity-engage/#comments Mon, 29 Jun 2015 14:50:00 +0000 http://blog.chronicarly.com/?p=558

I am happy to announce that I will be speaking at MedCity’s ENGAGE conference. The event is help July 14-15 in Bethesda, Maryland (just outside DC and Metro-accessible). Check out the agenda and the list of speakers.

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Screen Shot 2015-06-29 at 10.45.20 AM

I am happy to announce that I will be speaking at MedCity’s ENGAGE conference. The event is help July 14-15 in Bethesda, Maryland (just outside DC and Metro-accessible). Check out the agenda and the list of speakers.

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Mayo Clinic Center for Innovation Interview http://blog.chronicarly.com/mayo-clinic-center-for-innovation-interview/ http://blog.chronicarly.com/mayo-clinic-center-for-innovation-interview/#comments Fri, 12 Jun 2015 16:43:56 +0000 http://blog.chronicarly.com/?p=539

It was my great pleasure to meet AJ Montpetit from the Mayo Clinic Center for Innovation at HIMSS15 this year. We recorded this interview where I talk about my Crohn’s diagnosis, the story behind my Walking Gallery Jacket, getting into advocacy, and the way the Internet can help people with chronic [...]]]> Mayo Clinic Logo

It was my great pleasure to meet AJ Montpetit from the Mayo Clinic Center for Innovation at HIMSS15 this year. We recorded this interview where I talk about my Crohn’s diagnosis, the story behind my Walking Gallery Jacket, getting into advocacy, and the way the Internet can help people with chronic illness feel connected and useful.

Check out their other awesome interviews on their podcast.

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Book Giveaway: But You LOOK Good! http://blog.chronicarly.com/book-giveaway-but-you-look-good/ http://blog.chronicarly.com/book-giveaway-but-you-look-good/#comments Tue, 05 May 2015 19:16:38 +0000 http://blog.chronicarly.com/?p=507 The hardworking folks at the Invisible Disabilities Association sent me a copy of their book “But You LOOK Good” and graciously included a second copy for me to give away. Figuring I know far too many friends with chronic illness, I’ve decided to host a randomized prize drawing.

The book’s full title, “But [...]]]> The hardworking folks at the Invisible Disabilities Association sent me a copy of their book “But You LOOK Good” and graciously included a second copy for me to give away. Figuring I know far too many friends with chronic illness, I’ve decided to host a randomized prize drawing.

book cover

The book’s full title, “But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain” does an excellent job describing the contents. This short book is an easy read, packed full of useful tips and insights into life with illness. I appreciate that the book is fairly short and priced fairly. In this way, it is a good recommendation for friends and family of people with invisible illness and chronic conditions – a group that is typically short on time and money. As a person who has lived with chronic illness for 21 years, I found the book a useful refresher on how to explain my reality to others.

You can read more about the book here and purchase your own copy through their shop or directly from Amazon for the Kindle (or Kindle App).

To enter, please comment on this post (be sure to log in or leave your email address so I can contact you). Winner will be chosen via random number generator on Saturday, May 2, 2015 around 5 pm EST.

 

random number generator showing winner #3

And the lucky winner is #3! I’ve contacted Mary and will send her book this week. Congratulations.

 

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A Patient at HIMSS http://blog.chronicarly.com/a-patient-at-himss/ http://blog.chronicarly.com/a-patient-at-himss/#comments Thu, 23 Apr 2015 22:00:50 +0000 http://blog.chronicarly.com/?p=505 Thanks to a generous travel scholarship from HIStalk and admission badge from CTG Health Solutions I was able to attend the 2015 HIMSS Annual Conference & Exhibition, April 12-16 in Chicago.

Read my recap of the experience here: HIMSS15 Patient Advocate Recap

[...]]]>
Thanks to a generous travel scholarship from HIStalk and admission badge from CTG Health Solutions I was able to attend the 2015 HIMSS Annual Conference & Exhibition, April 12-16 in Chicago.

Read my recap of the experience here: HIMSS15 Patient Advocate Recap

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Listen to my #TalkHITwithCTG interview with intrepidNow: Carly Medosch, 21 Years as Super User of the Health System

Listen to my interview about HIMSS with Todd Eury’s Pharmacy Podcast: Transforming Health Through Information Technology

Watch my 5 minute interview with Nordic live from HIMSS15!

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Forget Uber, I Want Roomba for Healthcare http://blog.chronicarly.com/forget-uber-i-want-roomba-for-healthcare/ http://blog.chronicarly.com/forget-uber-i-want-roomba-for-healthcare/#comments Fri, 10 Apr 2015 19:34:01 +0000 http://blog.chronicarly.com/?p=500 Tomorrow morning I fly to Chicago for HIMSS15 (imagine Disneyworld, but for Health IT and instead of EPCOT you’ve got a maze of vendor booths hawking the latest tech and software). All the preparation and buzz has me thinking about what I want from health IT. Everyone is trying to be the next Uber for [...]]]> Tomorrow morning I fly to Chicago for HIMSS15 (imagine Disneyworld, but for Health IT and instead of EPCOT you’ve got a maze of vendor booths hawking the latest tech and software). All the preparation and buzz has me thinking about what I want from health IT. Everyone is trying to be the next Uber for [blank]. Google wants to autofill the phrase “Uber for” with “haircuts” and “moving.” There’s also buzz about the next Uber for healthcare.

Roomba

I use Uber here in DC sometimes. I appreciate the way the vehicles are clean and not smelly, and accept credit cards seamlessly when cab drivers always try to hassle me about not paying in cash. I don’t always appreciate the way the drivers sometimes get lost, even ignoring the app’s built in GPS directions. I don’t love the fact that Uber drivers sometimes assualt women or that Uber HQ can track users locations in real time.

The worst thing about Uber is that it’s threatening to crush the competition, putting full time cab drivers out of business and replacing them with gig economy freelancers, and will then be able to raise fares and do shady things with customer once they have a monopoly.

So I don’t think I want Uber for healthcare. I think I want Roomba for healthcare.

Chronic pain and fatigue, along with two pet bunnies (who shed fur and eat hay) conspire to make cleaning my small apartment difficult. I want products and services that make my life easier and save me time, energy, or money. Instead of pushing a heavy vacuum around, I can press a button on my Roomba and it will cruise around cleaning the floors for me. I do need to spend a little time emptying the bin and untangling hair from the brushes, but overall the Roomba saves me a lot of time. It can be programmed to run automatically while I am at work, and it is smart enough to plug itself back in to recharge.

I see a lot of health tech and I can’t think of many innovations that don’t actually require more time and effort to use. My gastroenterologist uses an online portal. Great! I can schedule appointments, pay my bill, and see my test results, all online. Except this practice actually uses 3 different portals, each with a unique URL and log in. The billing is one portal, the secure email is another, and the patient data is the third. To schedule an appointment I request a date and time in an online form, with no access to the doctor’s schedule or available appointment slots, then over a week later someone mails me a letter with the confirmed date and time that bears no resemblance to my original request.

This is creating more work for me when I need to free up time to take care of my chronic illnesses.

So please, where is my Roomba for healthcare? Let technology make my life easier, not cause more headaches.

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Awards that Matter Most http://blog.chronicarly.com/awards-that-matter-most/ http://blog.chronicarly.com/awards-that-matter-most/#comments Sun, 22 Mar 2015 22:59:00 +0000 http://blog.chronicarly.com/?p=486 Last year, I was given an award by a well-known charity. The clear glass award was engraved with my name, and presented by a former Congressman in a ballroom just outside DC, in front of an audience full of doctors, lawyers, and philanthropists. The evening’s entertainer, a sweet young country singer straight from Nashville, shouted [...]]]> Last year, I was given an award by a well-known charity. The clear glass award was engraved with my name, and presented by a former Congressman in a ballroom just outside DC, in front of an audience full of doctors, lawyers, and philanthropists. The evening’s entertainer, a sweet young country singer straight from Nashville, shouted in excitement when I walked up to the podium. I was able to give a short speech.

But that’s not the award I’d save in a fire. It’s not the one that means the most.

The award that means the most to me is actually a medal. Well it’s actually a necklace. It’s silver-plated, and yes, it’s engraved. It was presented unceremoniously, via USPS. While I was told it was coming, the arrival date was a surprise and the medal itself was beautiful and much more expensive than the tinfoil and glitter glue “medal” I had envisioned.

Part of what makes this award special is what I had to go through to earn it. The medal is engraved, “Marking 20 years of successful living with Crohn’s disease!” The other, huge part of what makes this award special is who it’s from. This award is from a stranger.

Well, she’s not a stranger now, but at the time, I had never met Kerri Sparling and we were even Facebook friends. I was talking about health stuff on Twitter and some people with diabetes were mentioning their 10 or 25 year medals. “Wait, you guys get medals?” I asked. Turns out that yes, a pharmaceutical company gives out medals to people who have met milestones in their life with type 1 diabetes.

“Woah, I want a medal!” I said. And Kerri replied that I deserved one, and then she messaged me for my address. I knew she had a young child, so I was expecting a craft project type of medal. Her kindness really blew me away. She didn’t know me, but she was acknowledging a huge part of my life, and she was taking the extra step to put time and money into making me feel proud.

So when my medal arrived, I was stunned. It was a real necklace! It was such a beautiful gift, even without the back story that made it priceless.

close up of medal

My second favorite award looks very similar to the one described at the beginning of this post. It’s glass, engraved with a shooting star and personalized with my name.

But this award was given to me in a small, dingy meeting room at a hospital in Virginia. It was presented by my mom, in front of a handful of my friends with Crohn’s disease of ulcerative colitis.

This award is engraved “Leaving the House” and is for “20 years with a chronic illness.”

My mom, who is probably my biggest fan, had read my post “Too Many Inspiring Stories?” where I said:

One of my personal favorite accomplishments has been not becoming a shut in, despite severe illness and subsequent anxiety that has made that task a daily struggle for the past 9 years. No one is handing out trophies for “Leaving the House.”

IMG_1706

I had the good fortune to be in the audience at an event where Susannah Fox described her experience of being a mom to a kid with food allergies. She explained how hard she has to work to prevent her son from being seriously ill, or dying, every single time he eats. She told the audience how it felt to be responsible for presenting over 1,000 adverse events in a single year, and yet no one really stopping to acknowledge this achievement.

I have kept Susannah’s words in my heart. I think she deserves an award like this. Millions of patients and parents deserve awards like this. We need to celebrate the dozens of small things we accomplish every day and have something to help sustain hope on those days when we grow weary.

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Cinderblocks 2 Patient Travel Scholarship Application http://blog.chronicarly.com/cinderblocks-2-patient-travel-scholarship-application/ http://blog.chronicarly.com/cinderblocks-2-patient-travel-scholarship-application/#comments Fri, 13 Mar 2015 11:43:25 +0000 http://blog.chronicarly.com/?p=438 The following is my application for the Cinderblocks 2 Patient Travel Scholarship.

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This has been a hard Winter. My health has not been good, and my mental health has suffered as a result of less sunlight and more days on the couch instead of hanging out with friends. I woke up recently with a [...]]]> The following is my application for the Cinderblocks 2 Patient Travel Scholarship.

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“Cinderblocks2: The Partnership with Patients Continues” Conference June 4-6 in Grantsville, MD. Image by Regina Holliday. Used with Permission

“Cinderblocks2: The Partnership with Patients Continues” Conference June 4-6 in Grantsville, MD. Image by Regina Holliday. Used with Permission

This has been a hard Winter. My health has not been good, and my mental health has suffered as a result of less sunlight and more days on the couch instead of hanging out with friends. I woke up recently with a mouth full of sores that are probably signs of a Crohn’s flare, but I’m trying to use denial as a coping mechanism for as long as possible.

Another blow came this Winter when I was not offered an ePatient scholarship to MedX for 2015. Objectively this makes sense, and I am thrilled that a new batch of ePatients gets a chance to attend, but I was still crushed. You’d think that after 20 years of chronic illness I’d have a huge support network, lots of mentors, tons of confidence. But the truth is that I don’t. Attending MedX in 2012 was life changing for me in so many ways, but most of all because it was the catalyst for a much wider advocacy – for all patients – after seeing in a profound way how much we were alike at core in our hopes, dreams, frustrations, and even in specifics like the medications we take (Prednisone, biologics). I knew that we needed to break down silos in health care, but came to realize that I did not want to be stuck in a silo for Crohn’s patients only when I could improve life for so many people with the same amount of effort.

My interest in the wider world of chronic illnesses has also been a great learning experience. I almost shudder to think how ignorant I was about many conditions, but I didn’t know anything about my own disease when I was given the diagnosis 20 years ago. It’s not hard to Google the textbook information, but meeting people in person or on social media and hearing their stories is my favorite way to understand what life is really like for them so I can identify common issues that need attention. It’s not all negatives, either! I learn so much about what’s working in one area of healthcare, so it can be applied to many others. Being involved in this world has taught me so much about the challenges health care providers face. As a patient, I don’t believe I will succeed in changing anything unless we can all work together. The best doctors are the ones who are burning out the fastest. We need to encourage and support them, but back that up with action and advocacy.

Around the time I got the rejection notice from MedX, I saw Regina Holliday opened registration for the Cinderblocks 2 event. I was so excited (surely this would be an awesome event on its own terms, but also a good replacement for MedX) that I was actually the first patient to book a ticket. The mission of the event permeates all aspects, so thankfully it was reasonable to put the ticket price on a credit card. I saw this event as a great learning opportunity, a good way to refresh and re-inspire my advocacy, and a nice thing for my Winter-depressed self to look forward to.

Even the logistics of this scholarship fund excite me (I’m a dork, okay?). I have tried in the past to start a general scholarship fund for other events. I tried, and failed because I could not get event organizers interested in the idea. Crowdfunding is a really great way for many people to achieve awesome goals, but patients are people and we may not be talented in the many skills that it takes to run a campaign. Even if we have those talents, we may not have the social media reach, or friends with deep pockets (I certainly have experienced the odd phenomenon that an increasing majority of my friends are other young women with chronic illness and empty bank accounts). Heck, even if all those things align, how many patients have the time and energy needed to devote to solo crowdfunding? So I am thrilled with the general scholarship pool and more than happy to promote it by social media, song and dance (you pay me to stop singing), or dressing up in a costume and standing on the side of the road twirling a sign.

Okay, so why should I get a travel scholarship? Well, I’m in that phase of advocacy where people are happy to have me volunteer, or join their board, or contribute to their blog, but not yet at the stage where people will pay me (not even to cover my costs of showing up). I have been learning how to wrangle invitations to local conferences, so that I may stand up to the microphone and ask the questions that other patients would, if more of them had been allowed in the room. Even though I save a lot of money on travel now as a local to Washington, DC, even a day of parking or a cab ride to a venue can easily eat up $30, and I currently cannot fathom the day when even $10 is an expense that requires no bat of an eye.

Most sick people constantly fight the accusations that they are lazy and entitled. Even if we do not believe these, their poison seems in to our souls. I have worked since age 15, but whenever I work harder, the disease has always been working smarter. My last surgery was in 2005 and all was well for a bit, until I started having accidents (that’s a euphemism) and developed PTSD. This makes working even more difficult. Then I was diagnosed with Fibromyalgia. My income is critical to affording the medication and accommodations that enable me to fight my illness. Since age 13 all my choices have been made with my future earning potential as the focus. This is heartbreaking in a way, another huge way illness has stolen my normal life and forced me to become an adult instead of a teenager. But I’m grateful too, because I learned the hard truths and could make critical decisions before it was too late. My career plan is a slow and steady one, and I’ve made so many concessions in the name of stability and benefits. My greatest fear is that my progress will be outpaced by disease progression.

If awarded a travel scholarship, I will first pay off the ticket cost on my credit card. I will use some money for travel to and from the event. If funds allow, I will book a hotel room for double occupancy and open the other bed to another attendee in need, at no cost to them.

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If you’ve read this far, I’d like to encourage you to please donate to the travel fund. You’ve read my account of why a fund of this nature means so much to me and other patients like me. The scholarships offered are paid for with this travel fund. Regina and S4PM are also looking for companies interested in sponsorships, so please contact them if you fit that bill.

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