Hurt Blogger

It’s about time I get something out in the open: after 25 years of living with autoimmune arthritis, I was finally correctly diagnosed with Behcet’s Disease, a rare form of vascular autoimmune arthritis. Now, you can either go look it up and be horrified, or keep reading and hear it from the horse’s mouth.

December 2016 will reign in infamy as the time my gut, that is the metaphorical gut that I listen to, could finally punch out for a much needed metaphorical smoke break. After 25 years, I finally found the diagnosis that explained every last oddity I had been mentally tabulating and attempting to connect. Then I napped. A lot.

Warning: if you find any of my following language offensive, or details TMI, too bad. I was pretty offended when my lady parts decided to start randomly developing ulcers. That’s right, ulcers.

November 6th I began feeling seriously - off. If you live with an autoimmune disease, you know what I’m talking about. My brain ran through known quantities, attempting to connect identified dots, create logical explanations that would lead to taking the best next steps. I decided on a scapegoat, and course of action with my PRN meds on hand.

November 8th I woke in the wee hours knowing this off feeling had moved beyond known quantities and I did something I rarely do, woke my husband early and asked him to stay home with me. It was also election day, and it was apparent I’d need great help getting to my polling location.

At 5am I was scanning my insurance website for the urgent care closest to me that seemed to also have their shit together. I arrived as soon as they opened at 8am, only to find a staff completely devoid of concern when I rattled off a laundry list of immunosuppressant medications - they didn’t even ask if I had pre-existing conditions. From the fetal position on the exam table, I explained to Dr. Judgmental that I have multiple severe autoimmune diseases and knew something was “off.” Her response, “I won’t give you pain medication, because everyone your age who uses them becomes addicted to heroine.” Hmm… ok, that’s not why I’m here. I politely explained I wouldn’t be needing a new Rx “because I have plenty of opioids at home.” Two can play this game.

After going over the immediate symptoms that brought me in, she asked if I had had new sexual partners and when my last STD screenings were. To which I explained my rock solid monogamous relationship of 8 years to her. Her response, “Woman to woman, men cheat and I would recommend full STD testing.” Two things: why is my husband automatically the liar in this situation? And person to person, don’t project your own relationship issues onto me.

I relented, because educated as I am, I still fear Los Angeles toilet seats and the urban legends they may house.

Thoroughly humiliated, I went home to begin weathering one of the worst weeks of my life.

Since I was a baby, I’ve gotten mouth ulcers. The first one when I was a toddler was so particularly bad that eating made me cry. My parents took me to an army medical clinic where they were laughed at. I have many recollections of these ulcers taking over my mouth through my life, and it wasn’t until I began anti-TNF treatment in my 20s that they began to subside [clue]. To be clear, a lot of autoimmune patients get mouth ulcers, but Behcet’s ones are slightly different - more severe.

I’ve been seeing the same rheumatologist for the last 6 years, and all the while I’ve continued to float various diagnosis to him. My gut has always said that we didn’t have it fully figured out with RA, spondylitis, and Sjogren’s (all of which I am still technically diagnosed with). My rheumatologist has entertained my repeated mentioning of EDS, especially given my family history, but said it wasn’t quite me.

Multiple episodes of severe bleeding through the years have been enough to make me terrified of getting in a severe car wreck, or dreading the day that I might need another surgery. Thorough hematology workups have revealed “something” is off, but they could never determine what. Surgeries of mine have been labeled as “severely vascular” and when a cast on my foot was taken off, nearly every surface blood vessel ruptured [clue].

Through the years I’ve learned words like “petechiae,” often used in the same sentence as “your body is shutting down.” I’ve read up on various rare diseases, letting the idea of them simmer on the back burner.

In 2008 I had arthroscopic knee surgery that became less than routine, as did my ensuing relationship with my world-class surgeon. One morning at 7am he called my cell phone to tell me to turn the TV on. It was the summer Olympics, and Sanya Richards-Ross was going for gold. She was also battling severe fatigue and ulcers, a diagnosis of Behcet’s Disease, and my surgeon wondered if this might be my answer too. I became obsessed watching this phenom win gold after gold! She has since been a source of inspiration and strength to me. But when I looked up “classic Behcet’s disease symptoms” I was oddly relieved to tell my doctor, well, I’ve never had vaginal ulcers so it can’t be that. NEXT.

Until I did get them. Let me tell you people, don’t fuck with a woman who’s body randomly produces vaginal ulcers. I now… how do you say? Give no fucks? When your body does something like this to you, even after living with chronic disease for 25 years, you suddenly have an entirely different perspective on life.

Revealing this diagnosis took an hour long conversation with my rheumatologist, combing through my medical history to look for clues that led to the ultimate aha and him saying, “thank you for being such a great historian.” I’ve had to be.

So, here I am now - putting all this out in the open. That’s something I was very nervous to do as someone who is so publicly open about her health. I didn’t want people thinking about me in THAT WAY. But several people reminded me that it’s not unlike Crohn’s patient advocates and their ability to keep it real on typically TMI topics.

I now feel comfortable in my *new* disease, having connected with several other Behcet’s patients on the DL (down low). For the first time in my life, I feel utter strength in fighting for MY DISEASE. For fighting for a better future for all of us living with this vascular form of autoimmune arthritis. We have no specific treatments, we are an orphan disease in the US, which lets our insurance companies play hard-ball on approvals for existing medications.

So to that I say, let’s fix that. Let’s understand this damn thing! So I am making a very sincere plea - help me raise the money for a dedicated Behcet’s grant through the Arthritis National Research Foundation. Once the money is raised, the foundation will do their due diligence in finding the right researcher(s) to bestow the funds on.

We only need $100,000 to make this happen - something I know can be done. Like I said (more politely this time)… don’t mess with a woman with Behcet’s Disease!

Thank you to Rare Disease Day 2017 for giving me the strength to be open about this. I am proud of my blue genes [jeans] and to band together with the other rare advocates.

One week before MedX I joked with an ePatient friend of mine that I was "preparing for the worst to happen on the opioid panel." This was 67% in jest, but I never actually thought anything would happen. Glad I prepared.

For starters, if you weren't there, watch the videos that are currently online captured by ePatient Scholar, Heather Corini. [note: I will update links as they become available] Preview of my talk, Link1, Link2, Link3

Background: I've lived with chronic pain due to spondylitis (autoimmune arthritis of the spine) and rheumatoid arthritis for 24 of my 31 years and use opioids as a tool to manage my pain. I use endless tools to manage my pain, opioids only being one, but I am not here to justify my disease, my pain or my life to you.

There were a series of talks before the panel from various people connected to the 'opioid crisis.' Bias and agenda blared, with a few very poignant moments that elevated the conversation. I gave my talk last, felt good about it and was congratulated and thanked by several panelists as I came off stage. Then we all walked on together - or so I thought.

The theme of this year's conference was Everyone Included, which must not have been known by every panelist. Then again, how would they know when a couple of them showed up to the conference only shortly before the panel? They were there to be heard, to be experts, not to listen or learn. This is a constant at too many conferences - with conference organizers not having enough of a hand in crafting the discussion to be had.

I felt good going into the panel. A week prior, we had had a productive call where I felt supported and valued. It was obvious our moderator had read deep into my blog. She even finished by saying, "I expect your voice to be a constant in the conversation." 

Several speakers were not cognizant of individual time allotments, cutting into our panel discussion time. If it weren't for our moderator, Joanne Kenen of Politico requesting more time, there would not have been a panel discussion at all. 

As our 35 minute conversation began, I quickly interjected as I felt I had true unique patient perspective on the particular question. Though I did feel slightly rude and out of place for just jumping in. 

I watched as my fellow panelists were asked question after question, and the audience grew increasingly restless. I caught the eyes of several shall we say discontented folks? I noted the time, it had been about 5 minutes since I had been acknowledged. I watched the next few minutes tick away debating what to do. Should I give Chris Snider 'the signal' that I might go HAM (go ahead and google that)? Should I interrupt our moderator and panelists and potentially appear a 'difficult patient' - and therefore take two steps back for all patients trying to make their voices heard?

Nah. I decided to sit back and let SHIT happen. It was a mindful, conscious decision on my part to wait and see how long it would take to be included in the conversation.

At around 8 minutes I saw Roni Zeiger, founder of Smart Patients and my friend and mentor walk out, "too painful to watch." Other clinicians joined him.

At 9 minutes, I could feel Twitter erupting. 

At 10 minutes, many of the ePatients were obviously planning something and I became nervously excited. Apparently viewers of the live stream were calling for a walk out, even for people to rush the stage in protest. 

Front row in the audience was ePatient Scholar Kirsten Schultz suddenly standing, interrupting - as we patients so often must do in healthcare to make anything happen.

To paraphrase: "I'm sorry, but Twitter is going nuts, and you have not acknowledged one of your panelists, Britt, for 11 minutes now."

Our moderator stuttered, insisted I was to be asked a question next, and stated that her and I had an understanding that I was to interject whenever I felt appropriate. 

Is this all I'm good for? After 24 years, not enough of an expert in my disease to be respected with a proper question? Every other panelist had multiple questions crafted for them based on their backgrounds and work. 

Me: "Actually no. This entire conversation has been happening around me, much like the greater healthcare conversation." (Or something like that.) 

At this point I was asked a sort of CYA question, what I wanted to see change. I stated much, and directly called out the media for their implicit role in driving opioid stigma and constantly crafting sexy clickbait headlines. 

Our moderator, being the Health Care Editor at Politico - a major media contributor, would not touch this with a ten foot pole. The media needed to be at least five minutes of this panel discussion, but it wasn't. 

What was a constant was regurgitating the same question in a different format to all of the healthcare professionals on stage: how have prescribing practices changed? 

For the remaining 10 minutes, I still was only able to speak if I interjected. Made to feel like a nuisance, forced to be aggressive, and in full combat mode - this is not how I wanted to represent a responsible user of opioids. 

Backstage,  I was again blamed for my lack of voice on stage. 

Moderator: "I thought we had an understanding that you would jump in whenever??" 

Me: "Obviously we needed better communication, because I did not feel I could easily interject." 

"That's why I had you sitting right next to me."

For the record - that's just where I ended up. I had not been instructed on where to sit.

Sangeeta Argarawal of Helpsy had made her way back stage to ensure I was ok. Being both a clinician and pain patient herself (and dear friend), she understood the potential for this to seriously affect me - she GETS integrated care.

But it didn't. It didn't because Dr. Larry Chu has created a community in MedX where we can have difficult conversations and KNOW we are supported. I never doubted his support or the community's. After all, I had taken my phone on stage so I could "have everyone with me in my back pocket."

The outpouring of love and support was INCREDIBLE (and eventually became overwhelming). I was greeted at the stage door by MedX staff, med students, ePatients, friends and near strangers. 

Repeatedly asked my feelings on the moderator, I told folks I needed to sleep on it. Now, 29 hours later I am writing this.

I do not believe she is a bad person or malicious. I do not believe she set out with the intention of silencing my voice. 

What I do believe is that she has bias against opioids and people who choose to use medication - that much was apparent on stage. I believe she is naive to the true depth of the problem and who all is being impacted and how. I believe her moderating was clouded by her own agenda on the 'Opioid Crisis.'

Fred Trotter, with his ever-brash self, joined myself and others in debriefing, and even asked the moderator about her intentions. Apparently, the plan had been to "build the panel to a crescendo." The plan had been to feature me in the final five minutes. I am not the discordant note to be played on your fiddle. 

What happened on that stage was actually a thing of beauty. It was a perfect representation of healthcare and the problems we still desperately face: talking around the patient, speaking about the patient as if they aren't there, not listening to what the patient says (or being able to read the temperature in the room), assuming your language will only be heard by clinicians, and most importantly designing without the patient only to bring them in at the very end as the token cherry on top of your project. 

Even after the panel I was asked by a prominent member of the health and MedX community if I was SURE I wasn't addict. Proof that we still need to be having this conversation. 

If you read this, kudos for being willing to view something through a patient's perspective. I promise I will continue to return the favor. 

Five years at Stanford Medicine X has taught me a lot, and maybe more than anything that no problem is too big to fix as long as we take care in designing for it, and have empathy, dignity and respect in the process. So: How might we have this conversation in a respectful, productive format? 

Note: I will follow up with a post outlining all that I had wanted to express on this panel, but could not.

UPDATE: I’ve been asked if the moderator was made aware of the audience. Two things: it’s very easy to uncover the tone of #MedX and the kinds of conversations had with a simple search of the hashtag or website. Secondly, on our prep call, I made all panelists aware that ALL stakeholders (save from many payors) would be in the audience. Lastly, I advised those with Twitter accounts to expect their notifications to “blow up.” After silence... “people will tweet us?”

UPDATE: More on the conversation and what I didn’t get to say via Just Talking Podcast with Chris Snider.

Today could be the first day of my new life, or it could just be any other day.

I have so many mixed emotions today: fear, intrigue, guilt, excitement, denial. The list is endless. Six weeks ago my rheumatologist and I made the decision to try yet another biologic treatment. My seronegative autoimmune arthritis seems to be particularly intelligent, or mutant, and tends to outsmart the medications we throw at it. I consider getting a few good months out of a medication a success. So having made it 2 ½ years on Orencia, I was flying high. Until I wasn’t.

Until my pain was mounting to the point where I couldn’t even cry. I was just defeated. Sitting in my pain management office I explained that I didn’t even have the energy to fight. “But you have to.” My rheumatologist has always maintained that the “best thing we have on our side IS your fight.”

When I reached the point where I didn’t want to fight any more, I knew my disease was winning and it was time for change. Enter the newest, shiniest biologic: Xeljanz. I’ll be honest, I’ve had my reservations. Can a pill form really be as effective as all the injectable and IV biologics in my past? Then I reminded myself that Methotrexate (chemo) comes in both forms, and has been doing it’s job for me for over 7 years now.

Six weeks ago we told my insurance company that Enbrel, Humira, Remicade, Cimzia, Humira again, Actemra, and Orencia had failed to help me. We told them of my numerous bad reactions to other DMARDS (disease-modifying antirheumatic drugs), of my inability to taper off of prednisone for the last 3.5 years, of my need for pain management, my inability to hold down a normal job, to have children, to lead a life of my choosing. This wasn’t enough apparently. DENIED.

On top of flaring for the last six weeks, I’ve also been stressed over the “what ifs.” What if they never approve it? Because I could never afford the roughly $25,000/year price tag. I am literally at the end of my options. My body challenges medications faster than the FDA does.  

The stress has been gnawing. But at the same time, I was able to take these weeks to convince myself that this is my chance. This is my real chance at truly reaching remission – the first time ever. This is a new type of drug – a JAK inhibitor and my immune system has never made its acquaintance. I, like Odysseus, have the element of surprise on my side. We’re coming for you, Arthur (my pet name for arthritis). I have the placebo effect on my side, and I am fully embracing it.

We gambled. My insurance still has not approved this life-saving medication for me. This is not me being overly dramatic. Left unchecked, my Spondylitis, Rheumatoid Arthritis, and Sjogren’s will continue to eat away at my joints – all of them. My immune system will twist my bones, attack my tendon, skin & hair, nerves, organs, brain, my mental health, etc. – my body.

We gambled and started me on samples of Xeljanz today. When they handed me the pills, they double-checked that I had a secure place to carry these tiny pill bottles worth thousands of dollars. I did the math. Out of pocket each pill costs between $40-50 dollars, and I’ll take two pills a day. That means that I currently would have to work about 5-6 hours a day just to pay for these if my insurance does not approve it. Impossible.

This gamble gives me both infinite hope, and paralyzing fear. What happens if it never gets approved? How long can I sustain treatment on samples? But how long can I keep going without trying?

Opportunity to participate in research on the pain experience, and be compensated $75 for your time!

I had the opportunity to give a talk to the market research healthcare company Kantar Health in April (good people!), and they have now approached me about helping them better understand the pain experience of chronic pain patients. Not just those 0-10 numbers on the scale, but illustrating what those numbers mean and provide context to them, how they interrupt your life, how you experience pain. Their aim is to help people like us with severe pain by helping companies they work with understand the full context of pain – visual as well as narrative. Join us in helping to make advancements in medical development for #chronicpain!!

DETAILS: This is a paid pilot study for patients with diagnosed Rheumatoid Arthritis, and we are looking for a total of 50 patients. If you are selected for this study, you’ll participate for 5-10 minutes a day for 7 days. You’ll use an easy mobile app to rate your pain that is based on validated pain scales.  You’ll give context to pain beyond 0-10 by leaving written messages, sharing photos like the ones here, or recording a video.  How you choose to give context to your pain that day will be up to you! Everything you share in the research study will be safe, secure, and anonymous. You may have co-morbidities as well (additional diagnosis like migraine or fibromyalgia, etc.). Each participant that is selected and completes the 7 day research period will be compensated $75 via a mailed check.

QUALIFICATIONS:

-Must be 18 years or older

-Live in the United States

-Diagnosed with Rheumatoid Arthritis

-Have an iPhone or Android smart phone

If you are interested in potentially being selected as a candidate, or would like further information, please email me at [email protected] with the subject line “Pain Research Applicant”.

Are you ready?! I’m taking over the @Health_Tips account on Twitter, this Tuesday and Wednesday to live tweet the honest reality of my disease - no holds barred!

Join me for #ArthritisAwarenessMonth by live-tweeting or using the #ChronicLife hashtag to share the reality of YOUR disease. For examples and more info, please read the blog posts below about the original live-tweet experiment. 

“…at last you'll know with surpassing certainty that only one thing is morefrightening than speaking your truth. And that is not speaking.” ― Audre Lorde (From the supportive conversations with my friends at CreakyJoints )

One too many filtered tweets... that’s how #ChronicLife began. On Monday, January 26th,I had self-filtered my third tweet of the day. I held back the honest realityof living my disease because I worried it would be too depressing for my followers. On Wednesday I announced enough was enough, and I would lift the veil on my daily life by live-tweeting what it’s like to live with my diseases for 48 hours.  Then in a show of solidarity and honesty from other chronic patients, #ChronicLife turned into a movement.

Those 48 hours turned out to be some of the most emotionally, mentally, and physically exhausting hours of my life. But I don’t regret a single moment of spending my limited energy in this way.

My gut feelings as soon as I completed the experiment were: exhausted, tearful, proud, that little emoji with hearts for eyes, overwhelming gratitude. What you won’t notice is sadness coming from me.  This story isn’t just about me any more, it’s about the strength of the entire online patient community.

I felt like I had been living in the engaged patient shadow. You could see me and my life, but you couldn’t quite make out my full truth.  What I showed in those 48 hrs is what I had been too scared to show: reality.

I was scared of appearing like I was whining. In my day-to-day life offline, I don’t voice a lot of what I did on #ChronicLife. While living these events, it’s not always productive for me to voice every iota of what I’m experiencing.  I choose to embrace my life beyond being a patient – something I had to regain after my health had consumed me.  I focused on the silver-lining in moments, and don’t allow myself to be consciously present of every aspect of my disease.  If I did, I wouldn’t have the emotional energy to live. As many patients who participated noted, by tweeting their entire day, they realized just how much they deal with on a regular day – and this made them feel stronger, because they do this every. Single. Day.

People routinely ask me what it’s like to be me, what my day is like. Or they don’t, and assume the smiling lipstick-wearing woman in front of them is the norm, that I don’t contend with my disease everyday. The beauty of this experiment is that thanks to Storify (a site that archives tweets), there is an archive of what a normal 48 hrs for me is like.  This is something I will be able to share for years to come.

Beyond my own tweets, I archived the highlights and various patients who participated in those 48 hours as well. What emerged is an educational portrait of chronic life that should become a part of every medical education.  The bravery of these patients will live on. What they created together is honest, raw, and above all enlightening.

Because of #ChronicLife, I no longer feel like I am hiding in the shadow. I’m standing in the sunlight, arm in arm with my fellow chronic patients.  I no longer have fear over sharing any moment of my #ChronicLife. We have the ability to educate the wide world of healthcare.  I lifted the veil not just for others, but for myself. I feel free.

This is the first of 2 blog posts on the #ChronicLife Experiment. The one you just read is personal experience with the #ChronicLife Experiment, and the second will appear on Symplur’s blog, utilizing their analytics of the #ChronicLife hashtag to understand what just happened in healthcare social media.

Read more from those that participated in the #ChronicLife Experiment:

Searching For Spoons: #ChronicLife Live Tweet Experiment

IT'S.{POTS}ABLE: THE #CHRONICLIFE EXPIRAMENT

BecominNeurotic: #ChronicLife - This Is My Life

ELIZABETH BARONE: A Day in My #ChronicLife

Letters from Pangea: My #ChronicLife

Pain Talks, but DOES NOT WIN!: I'm Tired

A Journaled take on #ChronicLife! - As My Body Attacks Itself: #ChronicLife As A #ChronicMom

More blog posts are being written by some very exhausted participants! Stay tuned!

For the next 48 hours, I am live-tweeting my #ChronicLife, and giving a portrayal of one chronic patient’s reality. I am setting some ground rules for myself, and ask that you read a few requests I have if you’re following my #ChronicLife experiment. I vow to embrace honesty, transparency,and above all encourage respect and a focus on education.

I will:

-Tweet every time I feel pain.

-Share the mental health aspects of my disease.

-Share all the medications I take.

-Share all the devices I use.

-Update this list throughout the experiment if necessary

I will not:

-Actively respond to all replies, unless they offer a chance at clarification, or improving the education of the experiment.

-Respond to how the experiment is making me feel in the moment, I’ll save that for the wrap up blog post.

-Filter myself

-Embellish how I’m feeling

I ask that you:

-Not judge me and be constructive - While you may find yourself consciously or unconsciously wondering why I have made a decision regarding my health, I ask you to be constructive, stop and consider why I have made or have had to make that decision, how you might handle the situation, what those in healthcare might learn from the decisions I’ve made, and by all means, if you have a better work around or solution, please share!

-Consider committing to live-tweeting your #ChronicLife for 24 hrs, and help others understand the reality of your condition. If you do,please let me know, I will include it on my blog.

Thank you for being a part of my #ChronicLife experiment! Iam excited, for I do not know what the next 48 hours will. Living with autoimmune arthritis is a roll ofthe dice, for I never know what this disease will bring on any given day. I look forward to learning as much as you do!

Be well,

Britt

UPDATE! I'm not the only one live-tweeting my #ChronicLife! For a full list of those participating, please check out the #ChronicLife Twitter List!

I have been haunted by a discussion I had in November, while enjoying a lovely dinner and evening with friends. One friend, a fellow patient, understands all too well that having a chronic disease or condition is truly a full time job. The other dear friend is part of healthcare, listens and supports me without question, and has seen first hand, the reality and toll of chronic illness.

In the midst of raucous debate and laughter worthy of my future wrinkles, I mentioned that I was exhausted from my disease and apologized for my fidgeting, it was due to pain and not disinterest in the conversation. I took Percocet. One of the friends turned to me in utter shock, asking what was wrong?! Was I sick? Was I hurt? Why was I taking medication?! 

My shock in turn said, "When do I NOT take medication?!" My friend went on to say quite innocently, that I looked so beautiful and lively, that they thought all this time, that my disease was controlled. In that moment I questioned everything I had been doing as far as advocacy. If this friend did not understand my disease, how possibly do others? It was suggested I film my daily life, because in all honesty, it is a mystery.

So I am doing the next best thing (for now): for 48 hours, I am going to live-tweet every reality of my day in regards to disease, every part of my life it affects, mental and physical, and let you honestly step into my world, if only briefly.

While I often tweet how I feel or what I think about healthcare, this will be different. Starting at roughly 8am on February 2nd (or whenever I wake up), I will begin tweeting every detail of my disease, my life and how it is affected. I'll hold nothing back. I won't filter my thoughts. My aim is to present a clear literal timeline of what my chronic life is like - the good and the bad. 

The best part? I have no clue what these two days will bring! While the severity of my disease is random, the reality of dealing with it is not. 

So please share this, particularly with colleagues in healthcare. I hope to paint an accurate picture of one patient's reality, and honestly portray the full impact of my disease. 

Follow me on Twitter: @HurtBlogger

"Are you finally rested?" asked the perceptive barista at the bustling Hostel this morning in San Francisco.  Finally getting a moment of calm amidst cross-country travels for advocacy, I met up with my good friend and fellow ePatient advocate The Afternoon Napper for a rare day of relaxation and site-seeing.

Munching on free oatmeal, tea, and bananas, we discussed the absurd travel scenarios we've been through recently - specifically traveling as chronic patients with sometimes unique needs. Highlighting recent atrocities, countering with good experiences. We were hung up on one question: why don't these service and so called "hospitality" industries listen, and accept our willingness to help change their practices for the better? 

We don't want to complain, we want to create solutions.

Take a look at The Afternoon Napper's post about WHY we are doing this, then help us help each other!

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts. Submit your post to [email protected] for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following: Post Title: Blog Title: Name: Twitter Handle: 1-3 Sentence Post Summary:  Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Genetic family planning is a direct discrimination against me as an individual living with multiple chronic diseases.  Was I not fit to be born?

Many start-up companies like Gene Peeks are banking on the fact that our culture would prefer to breed out genetic mutations known to cause certain hereditary diseases.  This would mean breeding out that which is difficult in life, that which makes us uncomfortable, that which we do not understand.

Understand this: I am a person who’s life has value regardless of the diseases I live with. 

There’s arrogance in thinking we understand the vastness of the human genome.  Do a search for “how many genes are in the human genome” and there isn’t even a solid answer.  Now think about how each gene has the potential to interact with another gene, what if each of those genes mutated?  How many more variations does that in turn create?  The vastness of possibilities is mind-boggling. 

Now remember that every single individual has a unique genetic structure that has never been seen before.  They have a set of possible health outcomes in their life that has never before been present.  Nature can work to both our advantage and disadvantage, but one thing is for sure -- we cannot outsmart nature. It continues to adapt and mutate, and will adapt to the attempt to breed out mutations, possibly by creating entirely new mutations.  Science cannot possibly protect against the inevitable and beautiful uniqueness of a natural individual.

The act of trying to control what we do not comprehend is guided by fear. 

I quit living my life based on fear some years ago.  When my husband and I were soon to be married, people around him in all honesty asked, “How can you marry someone with so many health problems?”  He didn’t know how to answer the question except to say that he loved me.  It took me five seconds for me to come up with a response: we [humans] do not know the outcome of our lives, and it is ignorant to assume that because you are healthy today, you will be tomorrow. 

Genetic science is not yet advanced enough to locate my gene/genes/mutations/interactions that account for my Undifferentiated Spondyloarthropathy, Rheumatoid Arthritis, Sjogren’s Syndrome, Scoliosis, and Complex Migraine.  Full Exome Sequencing turned up zero answers for my chronically ill mother and brother. 

Beyond disease, life inherently creates accidents, some of which will permanently alter the course of life similarly to disease.  We cannot genetically breed for the probability of accidents.  We cannot breed the act of living out of life.

I cannot help but feel that I am viewed as LESS THAN by companies who actively seek to breed out chronic disease.  My contributions to the world will not be less than because I have a disease. I would argue that they will be far greater because of chronic disease.

It's that time of year again! The Stanford Medicine X Conference is less than one month away, and this year there's a brand new program that allows patients and everyone to join in the conversation from the comfort of their own home! (i.e. from the couch, in your PJs!)

You can register for the FREE Global Access Program, which gains you access to all three days of the conference main stage talks and panels through a new high quality live-streaming broadcast.  The exciting part is, you can join in the conversation in real time via Twitter, using the hashtag #MedX. 

Medicine X is known for being the most interactive conference on social media, but what does that mean for patients? That means we get to interact directly with some of the world's top doctors, designers, engineers, etc. who are all working towards the same goal as we ePatient advocates: patient-centered care. 

So why join? For me, Medicine X has been an opportunity like none other. They were the first to truly listen to my voice as an advocate, and help me elevate it - and not just me, but a continuing stream of patient voices. Medicine X further breaks down the barriers in healthcare, truly puts patients at the forefront of the conversation, and fosters new ideas and collaborations.

For more info on some of the great speakers, and subjects at MedX this year, check out The Afternoon Nap Society's great breakdown on it!

If you have previously watched the live stream via YouTube, the same one will not be available this year, so you must register for the Global Access Program. Even if you think that you may just tune in for an hour or two, go ahead and get signed up so you can jump right in on September 5 - 7. I hope to see you all there, lending your voices to this ever-evolving healthcare discussion! Together, we can and ARE changing the face of healthcare. 

Figuring out how to manage my disease is always a work in progress. I tinker on myself like an old man tinkers on his beloved classic car. Lovingly finding ways to care for it, finding just the right parts to keep it functional, and taking it out for a spin in the Sunday sunshine.

A couple years ago I decided I would do everything in my power to try and achieve better health. Having no control over my disease would often make me feel helpless, so I decided to take back the control.  I began controlling what I could, when I could, which gave me a feeling of ownership in my health. I was no longer someone that had a disease happen to them, I was a person living with a disease.

I outlined what I could reasonably control: diet & exercise (yes, I’m beating that drum), my attitude and outlook on life, emotional relationships, and a consistent relationship with my rheumatologist and therefore my meds.

My relationship with my rheumy is open and honest, to the point of sometimes frustrated tears, but more often tear-inducing laughter. When I recently told him it takes every bit of willpower just to take my meds for fear of side effects, that signaled to him that it was time to tweak the dosages. A work in progress.

I worked on telling those around me what I need. Scratch that, I am still working on telling those around me what I need. A work in progress.

I decided I wanted to be happy in life. That doesn’t mean I am happy everyday, that means that I try to be. I rekindled old goals, and set some news ones, focusing on what it meant to be ME in life. I’m still learning what it means to be me. A work in progress.

Committing to keeping moving was the best decision I ever made.  Sometimes that means training for my crazy mountaineering goals, and sometimes that means simply walking outside my house for the day to water my plants.  A work in progress.

Maybe the best decision I made was to clean up my diet - for good. I will not preach veganism, as I honestly feel each person and disease is different, and therefore they need a different set of foods and nutrients. Diets are as individual as fingerprints. Regardless, cutting out the crud can help us all. Processed foods out - ‘food’ with strange ingredient lists had no place in my gut.

When I went full vegan on Valentine’s Day 2013 (a pure coincidence), I worried about energy levels and getting enough protein. I instantly started sleeping better, felt energized, and learned that veggies and grains have far more protein than we’re ever taught as kids. Don’t get me wrong, the BBQ loving Texan in me cries a little on the inside every time I pass a flaming grill, but I know how much better my body feels and that is motivation enough.

I took it one step further. I began using my food as medicine, researching what can help all my moving parts. I added chia seeds and flax seeds, experimented with dandelion greens when my liver was angry, and began eating blueberries and watermelon by the fistful to reduce muscle aches and pains. A work in progress.

Then a few weeks back, CheriBundi the self-proclaimed “cherry people”, asked me if I wanted to take their 7 day challenge. I’ve read for years about the anti-inflammatory effects of cherries, but avoided them in all of their plump red glory because I’m allergic - but only to fresh ones! So I thought, sure, couldn’t hurt! (The sceptic in me on full alert!)

A lovely box arrived, and it took all my willpower not to consume half the products immediately. For the next 7 days, I was to drink 8 oz of tart cherry juice, and change nothing else. I fully expected to see no results in a mere 7 days. I went about drinking my juice, enjoying the tartness like a refreshing lemonade.

On day 6, without putting two and two together, I was marvelling to my hubby how for the past week I had been an athletic beast, with very little pain and swelling! Setting a personal record in my 5K time, hiking a hilly 8.5 miles, and blasting through an entire mile in the pool. I wasn’t even sore… Then it hit me like a ton of bricks - it’s the cherries! I downed day 7 with glee, and on day 8, I ransacked my local grocery store for more.

I share this experience because it’s important for us to listen to our bodies, and to keep learning what they need - both physically and emotionally. To create a relationship with ourselves where we continue to keep trying, because at the end of the day, trying is what keeps us going.

Do you want to try CheriBundi?? After my great anti-inflammatory response, my friends over there offered to do TWO giveaways! Simply comment below and tell me what your “Work in Progress” is. A new goal? A great book you’ve always wanted to read? Winners will be chosen at random on Friday June 27, 5pm PST!

Standing in a pulsing crowd, losing myself in an epic performance by Queens of the Stone Age, tears began to stream down my face.  Despite it all, I refuse to stop living.  In this moment, I was overwhelming grateful for that - and having a damn good time.

Some people go on vacation to rest, read books, and be surrounded by quiet. Seeing as that is the necessary norm in my life, my vacation from life needed to be anything but that. 

It’s amazing I made it to the desert at all for Coachella, a three day music and arts festival.  I have been fighting a wicked flare in my neck that’s been causing continual headaches and migraines.  All signs pointed toward canceling the mini-vacation.  My GP patched me up the day beforehand with four injections in my neck, and one Toradol shot to my bum.

I have been looking forward to this trip for months, and I was not going to let my disease steal this from me.

I brought a small arsenal of meds and medical gadgets, hoping for the best, expecting the worst. I fell somewhere in between.

Each morning I rolled out of crisp white linens, and into the salt pool at our hotel. Allowing the cool healing waters to calm my cranky body, the sun to warm my aching bones. I paid little attention to time.

I wrestled with the decision to get a disability armband, but at the urging of fellow rheum-mate, @chronicchill, I did so the second I arrived at the festival.  At first they were hesitant to grant it to me all, seeing my flowing sundress, obnoxious oversized straw hat, and neon pink lipstick.  I explained to her how rheum affects me, and that she was seeing the start of my day – the good part. I promised not to abuse the pass, but put my foot down and said I would need it as the end of the day rolled around.

Banded up, I wondered the massive acreage of Coachella, finding music and friends, and quickly became alarmed at my body’s negative response.  Within mere hours I ended up in the medic tent, fighting both inflammation and tears.  One of the EMT’s wives had RA, so he got it, and gave me a quiet space to ice my knees.

I was disappointed in my body.  I felt betrayed.  After all the hard work I have put in to getting stronger, I am not invincible.

In the medic tent I resolved I could stay there and let the surrounding music fence me in, or I could let it set me free.

When I am at home and in pain, music has the ability to transport me to a realm of distraction that pain can’t penetrate. 

Surrounded by some of my beloved musicians, I allowed the heavy beats of the bass to flow through me, taking the pain with it.  I floated on the pure glee of screeching guitar notes, and once-in-a-lifetime experiences – like hearing Beck cover Billie Jean. 

And when my knees became too swollen and immobile, I made my way to the disabled seating area – quite frankly, one of the best views in all of Coachella.  This time I did not become upset, but overjoyed at the small community of us there refusing to be defined by our limitations, but living life on our terms.

Rock on.

Hi Anonymous,

I am very sorry to hear of your struggles. I completely understand as it took me 14 years to get an initial diagnosis. 

DON'T STOP! That is my first advice. You have to keep pushing for the answers you need. Some doctors don't realize how difficult it can be living in no man's land with no diagnosis. Communicate that that is what you need, a name for your pain.

I hope your rheumatologist is still treating you? Some medications can be diagnostic. Meaning, if you respond to them then that can help lead you to a diagnosis. 

Also, do all the research you can ahead of time. If you read something that sounds like you, take that idea to your doctor. Create a written list (or list on your phone like I do), and pull it out so your doctor can see it. That way they know you have questions and you won't forget anything. 

Don't be scared. I know how ridiculous that is to say, because it is near to impossible! But stress (as I'm sure you know) greatly increases symptoms. 

I'm glad your rheumy believes you, but if you feel that you aren't getting far enough or anywhere with them, then a second opinion is definitely reasonable. It won't hurt to talk to another doctor if you have one in the area. One may see something in your history and symptoms that the others don't.

Keep your head up, do your research, and remember the entire #rheum community has your back! 

Hugs and be well,

Hi Anonymous!

I am very sorry to hear that you have been struggling for so long. I too am currently on prednisone and working on tapering off of it. It's the drug we love to hate! 

I am currently on my sixth biologic, as I tend to burn through them quickly. Due to the severity of my disease, my body seems to outsmart the meds after 1-2 years. 

I am doing fairly well at the moment, even making a bid towards remission and for that I feel blessed! I am currently taking weekly sub-cutaneous Orencia, weekly Methotrexate injections (the one medicine that has consistently helped me), and I recently added Arava about a month ago. 

This is just what works for me, everyone is so different and so are their diseases. I would recommend you continue doing your own research on available medications. It never hurts to ask, and you never know what will magically start helping.

I also treat heavily with diet and exercise. I have been vegan for a little over a year, and it has made a massive difference. I don't eat processed foods, sugar, and rarely drink alcohol. If you've never done an elimination diet, I would recommend that to see if there are certain "trigger foods" that are increasing your pain and inflammation - again, everyone is different!

I wish you all the best. Be well,