Award nominations, seriously!!

I am excited to announce that I have been nominated for two awards through WEGO Health. They are Healthcare Collaborator: Patient and Rookie of The Year.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about the Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

Getting nominated for each of these awards has been such an honor. Since my Autonomic Dysfunction started in 2014, I have felt like a part of me was just stuck. With my nursing career on hold, I was grieving the loss of a profession that I loved so much. Now, in the last year, I have found my voice again. I’m now proud to say that I’ve connected with hundreds of people and am able to put my nursing skills to use as well as help patients and families. Knowing the health system has been invaluable. They say everything happens for a reason. Although I still have many questions about why this illness has taken over my life, it is becoming clear that I was meant to become a patient advocate. This has become a love of mine as well as allowing me to escape from reality for even just a bit. If any of my experiences as a patient or as a nurse are able to help others, then it has been worth it. As so many of us know, healthcare is a mysterious thing with no guide and it can feel cruel at times. I want to continue making an impact on how we can navigate and utilize the system. Being nominated for these two awards is just icing on the cake.

The following are the descriptions of the two awards that I have been nominated for:

Healthcare Collaborator: Patient–Speaking at conferences, consulting with healthcare companies, using their education to help make change in the healthcare industry – this Patient Leader is bridging the gap between industry stakeholders and healthcare consumers. These patient experts are passionate about healthcare and bring their skills and expertise to bear on a range of industry challenges. They understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Who is someone you know out there working within the industry to make change? Who is making an impact, not only among patients, but on the healthcare landscape as a whole?

Rookie of The Year–every year, more and more health bloggers are excited by empowerment, raising awareness, and helping others. This particular advocate just started their blog, site, or community work this year and is already making a huge impact. Though they’re new to the scene, they show a ton of promise and are, without a doubt, going to do amazing things in the future. They’re well on their way to becoming a top influencer within the online health world. Who is your favorite new Advocate? Who is someone you can see rising above and making an impact in the online health space? Let’s give them the encouragement they need to keep putting in the hard work.

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC on October 23rd and 24th, 2017. Attending this event would be something concrete to wrap my head around, confirming the fact that I can still make a difference. It also would allow me to meet the industry leaders who are so influential. If you’d like more information about the summit, you can learn more here.

I’m now looking to my incredibly supportive network to help endorse me for these awards. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badges located on the right hand side of this blog, beneath the “about me” section on this website. There is one for each award that I’ve been nominated for.
2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for these awards.


Expertise wanted…just not here

“So if we call neurology, nobody is going to know about you?”…dead silence. Just when I thought I had heard everything there was in existence as far as excuses, dumb questions, sideways looks, shrugging shoulders, and sighs before even entering the room. No actually, it turns out that there is far more.

This week has been memorable, not in a good way, but more of a, ‘don’t ever repeat again,’ way. I have been experiencing some new symptoms in the last couple of weeks and things have changed this week. On Wednesday we were told by my out-of-network neurologist that I needed to be evaluated because there had been a change in status. For us the closest ER with the capability of a neurology consult is roughly an hour away and is in-network. The nurse working with me was amazing and called the hospital ahead of our arrival, gave report, as well as shared suggestions that the on-call neurologist was recommending for testing.

We arrived at the ER a little after 1 pm and were back to a room by about 2 pm. The ER resident examined me and while doing his history, became very confused regarding our entire situation. He couldn’t understand why we were being seen out of network but were at this ER. After explaining that the neurologist treating my migraines was at this facility, but doesn’t have anything to do with my autonomic issues, a neurology consult was finally called in.

Tick…tock…tick…tock…tick…tock…tick…tock…5 pm. Oh look! Two timid appearing neurology residents entered the room. To ice the cake, suddenly I remembered that July is when all of the newly graduated doctors are unleashed onto the general public. One of them possibly was a second year resident, as she had the correct tools in her pockets to conduct a neuro exam. The other most definitely was a first-year, baby face, with no clue. I helped guide him through the exam. Yes, me, the patient/RN/case manager/social worker/advocate, told the doctor how to do his exam because he did not know how to do it. I also told them about the other facility calling up and giving report so that they had it for reference.

As the residents exited the room, they mentioned that they would talk to their attending and be back.

Tick…tock…tick…tock…tick…tock…8 pm; doctor hand-off for the entire University teaching hospital…tick….tock…tick…tock…tick…tock. The nurse kept popping her head in to assure us that she was paging neurology repeatedly as well as the charge nurse. Finally 9:30 pm, the ER resident stepped in and said that he heard from neurology and we were free to go home. Apparently it wasn’t felt that any testing or observation was needed, despite the recommendations from the other facility.

Diagnosis: weakness and numbness. Great, I already knew that. Biggest waste of half a day of my life in history. As the nurse was removing the needle from my port she muttered, “what a f*****g joke.” Agreed, my friend, mutually agreed.

Onto another day of history making, wasted trips for symptoms that nobody is looking at. Except for the neurologist who desperately wants to address things, but we can’t go there until we get another prior authorization. That’s another story for another post. Don’t you just love my life…the things that happen; I couldn’t make this stuff up even if I tried!


Where my demons hide

I saw a new autonomic specialist the beginning of May. Work began on this post before I had the appointment, because I was waiting to get told the same things we already knew. “This is a really rare condition and all we can do is symptom management; we can’t reverse the damage that’s been done.” I’ve already faced those demons several times and have grieved each time, knowing that life is never going to be what it was before. However, I was forced to face them again. The feeling in the pit of my stomach, that something was much more serious, proved to be true. I cried for days before the appointment in the solitude of the comforting walls of our house. It’s called anticipatory grieving and nails it on the head.

When the dreaded day came, I didn’t even want to go in for the appointment. I finally broke down and told my husband about my fears. Being a mechanic, he needs something concrete for an answer. He fixes things for a living, but the one thing he loves the most, he can’t fix at all. He coaxed me out of the car and tightly held my hand as if he was willing courage into my heart.

The appointment lasted 90 minutes and the doctor was never rushed. It was probably the best appointment that we’ve ever had. Those fears I had about this monster taking over my body and the resulting sequelae, well my gut feeling was correct…again. Our doctor is fairly sure he can put an official name to this. Although this is autonomic, it is not a neuropathy, as we had believed for over three years. It is a central autonomic disorder, which increases the fear factor and seriousness. He also believes that I was born with a mitochondrial disease and that is now attacking my brainstem.

As of now, we are back in the testing and consult phase. It feels like we are starting the entire diagnostic process again; the difference being that this time there is no going backwards. It’s just going from bad to worse. It’s just a matter of how bad.

So, I’m facing my demons again and the grieving is in full swing. The unknown is so hard to face. I had made peace with the fact that we sort of had a name, were attempting to treat symptoms, and knew that it was progressing. It was kind of like just floating in mid-air. I was okay with that. Things are different now; the grief process has reset, yet again. These diseases of ours, no matter if they are physical or mental; they all have a large emotional toll that we don’t want to admit to…I know that I don’t want to admit it.

I want to be me, the old me, the me I was three and a half years ago, before my life changed in a matter of days. I’m tired of being home every day. 1273 days of attempting to accept this new normal but yearning and dreaming each day of who we used to be.

So, I’m declaring war on my demons. Well, I think I am. Even the best laid plans have kinks in them…
demons hide