Today is a day where I woke up not feeling well. My energy was off. But yet, I still got up & did something with my morning. As Ronda Rousey says, “I’m not a DNB (Do Nothing Bitch)!” I think I need to buy one of her shirts & wear it for inspiration on days like today. (Though I admit, my interpretation of being a DNB might differ from others. I’m totally picking up what Ronda’s putting down with it at it’s core, however).
Recently, much of my focus (as this battle has intensified) has shifted to lean on what I still can do, rather than what I can’t or what I now struggle to do. It could be very easy for me at this level to wave the white flag in disgust. Simple things like showering take more effort & oxygen than they used to. It now takes me 3 liters of continuous oxygen to wash my hair. People may find that depressing, but I’ve never been one to sugar coat or back away from the truth of how life with this disease can be at times. I think it’s an important truth. People often take for granted the most basic things in life, until they can no longer do them independently without assistance.
While I might have slowed, I haven’t stopped. I’ve often done many things in this 12 year LAM (& 38 year TSC) journey that even health care professionals were amazed I was doing as my lung function was declining, including working until a few weeks ago. I don’t work for my sole source of identity & ego (I learned that lesson the hard way years ago), I do it to feel productive & to show myself that in spite of chronic illness I can still have a career & be a success. That definition of success though is fluid & changing. I celebrate small victories now as much as larger ones. Each of them take on greater importance over time.
I was over the moon in the earlier part of this year because after 2 years of reinventing myself in another sector, I received an internal promotion. One that I had applied for on a whim & figured I stood a good chance of getting but didn’t entirely expect. I was pleasantly surprised when it happened. But then that was tempered with some symptoms of LAM progression shortly after. Then came the oxygen & the double lung transplant evaluation set-up. Then inevitably came another blip that made me stop working entirely (at least temporarily).
At first, I was so resentful & angry. I won’t deny I still have those moments, but now I tend to look at what I can still meaningfully do to be productive if I’m no longer able to work a full-time job after my lung transplant evaluation. Because even if it’s not this month, the time will come & it might be sooner than I’d like it to be. I often think a bit into the future too, if I have a successful transplant, what do I want to do with my new life?
I’ve worked hard, I know. I stop & reflect on that with around 30 percent lung function remaining (the larger & better numbers I focus on & use to quantify that percentage in my case). I grew up the product of two self-employed parents, one in small business, and one a third generation family farmer. I often don’t know the meaning of the words “relax” & “slow down”, though I am starting to see the value in them now.
I’ve always enjoyed a wide variety of hybrid and jack-of-all trades type of work in my career. A lot of it internet based, some healthcare based, some customer service based & some insurance based. But as I became more ill, I noticed the value below the surface in a lot of these jobs & how to leverage those skills to my own advantage when I needed to. I didn’t have anyone to coach or teach me about a lot of these rough patches along the way, I was left to figure them out myself. I think I’ve done a decent job, but yet I see so many people without these skills or who may have them but don’t know how to leverage them when it counts. I see potential in that with my idle time because I was one of those people for a long time. I’ve also picked up a lot of “freebie” skills in my volunteer travels with the TS Alliance & The LAM Foundation for which I am grateful because I find them taking on increased importance at this juncture.
When I penned this article for the Journal of Participatory Medicine, I was coming out of a very dark period of many serious health issues. I crafted it with the gentle urging & guidance of two mentors & former Medscape colleagues after I shared my story with them. I later penned this article to celebrate our first treatment breakthrough, which did gain vast readership & still seems to come up high in searches when googling lymphangioleiomyomatosis (LAM) which makes me proud because my awareness efforts are succeeding.
Those articles were my first foray into the world of “participatory medicine”. This is an amazing cooperative movement between both patients & professionals. Defining it is not so easy (because it means different things to different people), but to me it means having a partnership with your healthcare professionals & being active & engaged in the entire healthcare decision-making process. Though I have not been as active as I like, I eventually joined the Society for Participatory Medicine & have had spirited discussions on a vast array of healthcare related topics when I have been able to contribute to the forum. I follow a lot of their bloggers on Twitter. The movement is something I’ve been very passionate about because as it is evident in the article, I was doing it on my own for years without fully realizing it.
It was through this avenue that I was able to re-engage in the movement with help of Jeanne Pinder & Sarah Krug. Sarah had recruited me for the Patient Shark Tank in 2014 for the NY eHealth Collaborative’s Digital Health Care Conference. It was a great experience for me, as I was working in insurance instead of the internet sector at the time, so it was great to reconnect with this important realm that was part of my professional life for 8 years of my career. Most important it was also fun, because it meant being able to see such interesting, innovative, & up-&-coming digital health apps.
But little did I know I would come to really “geek out” on one of the winners (there was a tie), Clear Health Costs.Com. Jeanne is a journalist who crowdsources health costs of different procedures to educate the public as to why shopping for healthcare services is more complex than most might think. She strives to bring transparency to the wide disparity in pricing in healthcare, even between healthcare systems within blocks of each other. This was something that working in insurance I could relate to because I took so many calls from consumers who didn’t understand why their deductible expenses were so high for certain tests. Some weren’t even clear on what a deductible was. So this opportunity really engaged me & gave me new meaning as to why my job as a customer service agent for a small employer health plan was so important.
I’ve often thought about being an independent benefits coach for people & helping them realize what it takes to pick a workable plan in the healthcare marketplace today or how to leverage a bad one & try to make the best of it. This was something I had struggled with for years, but was missing the knowledge on how to go about resolving it for myself until I started working in the front lines of the sector that brings it to light for many people.
I don’t have it down to a science, but I have gained so much knowledge from being in the trenches learning from people & seeing how an insurance claim makes it way through the system. It’s definitely not some people’s preferred form of “geeking out”; but it sure is mine. It doesn’t make for good party conversation though, people’s eyes tend to glaze over after 2 minutes. Their relationship with health insurance is often love-hate because more often than not, it leaves them frustrated & befuddled.
I was also able to hopefully provide insight for people to help themselves when WHYY asked me to contribute to this piece on making sense of medical bills earlier this year. I really enjoy these opportunities when my career marries up to what I’m trying to do as a volunteer, both for my own rare disease communities but others as a whole.
I don’t post these articles & highlight these things I’ve done to brag. I point them out merely to illustrate how my first baby steps in self-advocacy really took hold & blossomed once I was given the opportunity to do so.
I’ve enjoyed speaking to my communities, to other organizations, & the research community about my trials & successes with LAM & TSC, but it also has been very empowering & cathartic for me as well. It’s in times like these, when I don’t feel as useful, for me to reflect & see how far I’ve really come in a relatively short period of time. It’s also I feel a testimony to many organizations who are smaller who really do rely on their volunteers in the trenches, what can happen when their volunteers are given some gentle nurturing & a space to grow & try on new skills.
I would have never dreamed that I would have visited Capitol Hill 3-4 times & done about 20-30 different meetings to get Congressional Delegates to rally behind medical research. Yet, I’ve seen that happen too. I was also part of that, and political affiliations aside, there’s something to be said when one can say they’ve made change possible on the ground floor level & been an active voice in their own government. I do hope to return back to the Hill when I’m in better health. But I still maintain those relationships with my delegates on annual basis through email or phone calls.
I used to be so frustrated with the pace of research but realized I couldn’t have an informed conversation about that either without actually being involved in the process & seeing what happened behind the scenes to make my treatment breakthrough possible.
Even when I was enjoying my ability to do other things like watch Ronda’s rise to greatness, improv comedy, & storytelling workshops while I was on my rapamune “honeymoon” (as I like to refer to it as); I was also able during that period to give back in a very easy & meaningful way by serving as a consumer reviewer of research proposals for both the TS Alliance & the TSCDMRP (Tuberous Sclerosis Complex Congressionally Directed Medical Research Program). I wish more medical research was done this way because it’s so effective & productive.
I peer-reviewed a vast array of proposals providing valuable insight as a “patient” (while I don’t like that word I do use it because there’s times where it’s the appropriate term) with my rare diseases. I gave feedback on the quality of life impact these cutting edge, high-gain, short-timeframe programs could have on my communities. I was also able to discuss ways to advance both basic science & clinical understanding into my diseases through these proposals, hopefully leading to more breakthroughs & future treatments with existing drugs or novel agents. There are so many good proposals, but the CDMRP program really pushes the best of the best to the top. This program is what led to my treatment advance. I was able to see some very exciting changes & some now current clinical trials come out of this work which gave me great encouragement (& still does). Even though there is nothing really at this level that will change my current situation, it gives me comfort to know I might have had a hand in changing it for others.
It is very empowering because I was given an equal voice & spot at the table along the bright research minds working on these diseases. Some of these people I have known & respected for years were listening & learning right along side of me. We were making a difference together.
It can’t get much more empowering than that. I find that empowerment is the fuel that keeps me going on the low-energy days when I sometimes feel that some of that “fight” has been zapped out of me.