A Little Advice for the Medical Professionals

IMG_2147On May 13, 2016, I was asked to do a question and answer session at 2016 Summit for “The Coalition for Compassionate Care of California.”  That time has come and past.  This is what happened.  When I woke up that Friday morning, I had absolutely no idea what to expect, except the fact that I was meeting with a representative at the crack of dawn!  For me, waking up…oh lets say…7:30am is like waking up in the middle of the night. I sleep a lot and have trouble falling asleep due to my meds and pain. But when that alarm went off, I knew that this was the start of something that I’ve only dreamt of.  BTW, they also thought it would be important to have my dad up there with me.IMG_4451

My dad, Devon, the representative from CCCC, and I were seated for breakfast and I was told that we would have two others joining the panel. I was a little apprehensive when I learned that the others were a complex patient who was only 11 years-old and her mother. As a 23 year-old with multiple complex diseases and experience, I didn’t think I would connect with my new best friend, Anna — the aforementioned 11 year-old.  I am here to tell you that she is absolutely the most inspiring medically complex patient I have ever met. I found someone, YES, someone a lot younger, with a deep understanding of the issues and frustrations facing patients with complex diseases.  But the point isn’t about age, it’s about our stories!  As to Devon, I love her and look forward to advocating with her, Anna and other like us in the near future.

IMG_2534Anna and I immediately bonded with our endless amounts of “hospital fails” and how we felt we both never really fit in with kids that have just one of our diseases.  I went to a camp with children with mainly CHD, and she likewise, went to a camp for one of her diseases (Muscular Dystrophy).  We shared that we never really felt as if we were understood because we are not just one disease and even our diseases are NOT textbook diseases!  Needless to say, but I will, we also bonded talking about what we like and don’t like from our health care providers.  Number one complaint – they do not listen to us.  Number one compliment, the much better care we get when they listen to us.  Thank you Drs. Sine and Ishiyama.

Our voices need to be heard! That is why Anna and I fight everyday.  Yes, I know IMG_1986we are complex and take up a lot of their time, often underpaid or not paid, in trying to solve our medical puzzles.  You see, Anna and I have had most of the same experiences, the difference is that I am a lot older than her and my voice still isn’t being heard. How do you expect us to trust you when we have heard it all before?  Mostly, we have been disappointed, and thus its really difficult to trust medical personnel. We both have suffered many medical mistakes because OUR VOICES WEREN’T HEARD.  We both carry the scars and impact of these mistakes and have suffered many long weeks over a number of years in various ER’s, acute care floors and PICU’s due to them.

Medical people, we know our bodies and when something isn’t right.   Anna ended up getting a central line infection at camp because the camp doctor didn’t listen to her.  When she needed a dressing change, he disregarded her instructions and did it his way.  She kept telling him he was doing it wrong and telling him how to do it right but he wouldn’t listen! So who had to pay?  The next day ended up with a 106 temperature,  a central line infection and a fast track visit to her children’s hospital.

logo-new@2xWe have to live with our diseases and all that goes with them every day. Unfortunately, they don’t go away and we cannot take a break from them. This is our life and we might not have the advanced degrees YET, but we have something really important to add to the care team.  It our knowledge of our diseases, their impact on us and the whole range of weird symptoms and interactions that go with them.  Know that everything you say and do affects us physically and mentally. Complex patients like us are new, we are surviving and thriving in greater numbers.  If you want improve our quality of life which can range from dismal to FML, then Listen! My one piece of advice to anyone who works with life-threatening medically complex patients, is to visualize what we must have gone through medically, psychologically and socially to survive.  Give us the respect and dignity we deserve to have made it this far.  Know that we are terrified of more mistake, their impact on our lives and little control we have zero over our health and its future impact on us.

I just found out one of my best friends from camp with Pulmonary Hypertension IMG_2535and related complex conditions, like me, only has one more option and that is a heart and lung transplant.  Her name is Kathleen and we have gone through crazy times.  Kathleen is waiting for a hospital room to be transferred so she can start that long process.  She wrote on Facebook that she intends to climb mountains after the surgery and knowing her, I believe it.  The scariest realization for me is we are last two girls from our complex group who are really the -1% –  my name for us medically fragile complex types.  We grew up together and were there for each other when several of our friends passed!  This is of course, when one or the other of us wasn’t hospitalized.

I am proud to announce that I was asked to partner up with the CCCC to develop an engaged patient advisory group to reinvent the conversation around advanced care planning and participatory medicine where healthcare providers see patients as valued full partners in their care!  A pretty complex statement for LISTENING.

This is just the beginning for me and other -1 percenters like Kathleen and Anna!  These young ladies have made a huge impact in my life.  Kathleen is a rock and one of the toughest young adults I have ever met. Although Anna and I just met, she is incredible and I can’t tell her how much hope she has given me. She’s going though what I have and she is only 11! To tell you the truth, I don’t think I could have done what I am doing now at her age but we know that giving up isn’t an option. So we are now standing up and making medicine listen to us! We never asked for our diseases, but we can’t do anything except teach what we have learned throughout our lives so we can make a difference to the next patient and the next and future generations of patients.

IMG_2061I want to just give a HUGE shout out to my family, Aunt Carrie, who videotaped the whole thing, my boyfriend Jake who drove 10 hours that day, my cousin Maddie and her husband and my grandparents, who came to the conference to support us!  Alexis, my middle sister, was put on the spot and knocked it out of the park.  I know it was uncomfortable and scary but she had the whole room in tears.  Thank you all for coming. I am so happy you got to witness the moment I realized that I have a bigger purpose in my life than just going to school, getting my degrees, and working in my degree field. I have something better right now, it is sharing my experiences and this is my mission and the reason I am still here today!

Finally, Devon and CCCC, I am ready, bring it on, let’s advocate, change attitudes and make a difference.  Kathleen, go climb a rock.

But you don’t look sick . . .

The world’s okayest sisters

The happiest place on earth is not as happy as happy as it used to be.  When I was little, Disneyland was very understanding of my needs.  So many people began abusing the policies that others began to react with people with disabilities with hostility. Disneyland changed their policy and now, not so happy or understanding.


This is even more so when you have an invisible disability.  I can walk by myself for limited periods of time and I have no outward sign of disability except when my poparkingdisrt catheter shows or I happen to be using oxygen at the time or sporting my overdose steroid look.  Several times people insulted me and questioned me about why I was provided special services.  My older sister Jocelyn turned on them and in her sarcastic schoolteacher voice gave them a lecture about invisible disabilities.  Its too bad they weren’t the ones Alexis and my dad hit in IMG_0957the heels with my wheelchair as we ran through Disneyland.

Jocelyn and Alexis

Despite Jocelyn’s intervention, this has happened to me and continues to happen to me at Disneyland, other events and even when using a disabled person’s parking placard.  It doesn’t help that when they finally see some outward sign of a disability with my oxygen backpack, the catheter or me struggling to get somewhere, they look guilty and walk away — the hurt and the pain has already been earned.  Sometimes I even pretend to have a limp or look like Frankenstein’s Igor so that people see an outward sign and I am not given that look.

Who is the sick one here?

Now, instead of embarrassing myself, if they question me at all, I choose to educate them.  Usually, I begin with “when you are born with only a partial heart, one working lung, and immune issues, the parking passing pass helps.”  “But you don’t look sick . . ,” they say.   I respond (in my head), ” and you don’t look stupid,” as its the more popular response from those of us in the You don’t look sick club!

I now realize that instead of me being shamed about something I had no control over, I decided to spread the word and teach others about invisible diseases. IMG_3327 Surprisingly, the more open I am with others, the more people I realize have similar problems and feelings about their invisible diseases. I am beginning my lecture series on May 12 in Newport Beach to discuss issues dealing with complex diseases and the medical professions response to us.
Finally, just because we don’t look sick, it doesn’t mean we aren’t.  We would give anything to park in the farthest part of the parking lot and not live with the Russian roulette of our daily health problems.