Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.
I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.
Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.
It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.
I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.
The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.
It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.
I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.
We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.
I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.
I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!
Diving into the issue of caregivers in the health care environment, arose the topic of domestic caregiving workers. Ai-jen Pooof the National Domestic Workers Alliance and Caregiving Across Generations, brought the issues faced by these workers to the forefront. Emphasizing that domestic workers are often the unseen in caregiving, although they provide care to the most vulnerable populations in the U.S.
Los Angeles Major Eric Garcettia supported women’s health and reproductive rights stating “the right to control your own body and health, these aren’t partisan issues, these are human rights”.
Jane Fonda actress, author, activist, and fitness advocate brought to light specific health barriers, need for community investments, policy reform and the role of stigmatization among lower income and black communities. She stated “addiction in your community isn't considered a public health crisis or an existential community crisis. Oh no. No clinic is going to be built in your neighborhood and if one of your sons is convicted for his small stash of pot and imprisoned he's no longer eligible for food stamps, public housing or student loans”.
Patrisse Cullors, Author of “When They Call You a Terrorist” and Co Founder of Black Lives Matter shared the very personal story of her brother, the criminal justice system, police brutality and mental illness. “Monty had just turned 20 and was already displaying signs of mental illness when in August 1999 he took our mother's car on a joyride in the San Fernando Valley, teenage shit. After fleeing the police he was arrested on charges of abating an officer. The mistreatment he remembers took place while he was awaiting trial”. Continuing, she stated “Monty was in a precarious mental state, he was diagnosed with schizoaffective and bipolar disorder while in jail. And while he was being transported after a psychiatric evaluation he was beaten by four or five deputies. Monty was choked and he blacked out and he awoke in a pool of his own blood. Abusive treatment continued and when my brother was moved to Twin Towers jail he and many people would say “It was torture”. In closing “My brother was ultimately convicted of battery on an officer and the original charge of abating police and sentenced to forty months in state prison. By the time he told the story of his treatment in jail to a lawyer it was too late to sue”.
Lillibeth Navarro, from Communities Actively Independent and Free, uncovered the reality of legislation that gave way for mobility among those that are depending on mobile aides to explore their surroundings and environment. She stated “Finally the American with Disabilities Act was signed into law on July 26, 1990. So for the first the first time in our lives people with wheelchairs could go out with friends, on a date, they could work, travel. I just been to DC last week. People with visual and sensory disabilities could touch, feel and see their environment”. She continued “Those with mental and learning disabilities became part of this human experience of exploring what life is about. We rose from obscurity to visibility. And even started an international revolution, transforming other countries and inspiring them to create access for all people”.
Highlighting social determinants of health through the scope of homelessness in relation to poverty Renata Smiril President and CEO of LA84 Foundation spoke on behalf of Greater United Way of Greater Los Angeles pointing out “we have much to be proud of here in Los Angeles. We’re the most diverse city in the country. The most diverse city with boundless opportunities for success. The perfect place to pursue your dreams, but unfortunately not everyone in Los Angeles are sharing all the opportunities this great city has to offer. And far too many of our fellow Angelinos are homeless and living on the street”. She continued “Listen to this Close 60,000 men and women, families and children are without a place to call home. 60,000 And nearly 18,000 of our sisters, our daughters, our mothers are sleeping on the streets today and that's a 17% increase just one year. As we all know life on the street is more dangerous for women, children, in our families. But you know what, the United Way of Greater Los Angeles the lead on the challenge of ending homelessness 10 years ago. Continuing by listing ways in which United Way of LA has affected change she stated “We’ve made connections, took action. We’ve marched, tweeted , made calls, hosted events, lobbied our elected officials, testified, integrated new technology, shared stories and created a movement with our community partners to pass two valid initiatives that will provide over five billion dollars. Five billion dollars to build housing and provide homeless services for the L.A County over the next 10 years”.
As the afternoon progressed, with more speakers discussing health issues, Julie Miller-Phipps President of Kaiser Foundation began the discussion of mental health and women. With May being mental health awareness month, the timing couldn't of been more perfect! She began “what we can to create an environment in this century, in California, in Southern California where mental wellness is really what we talk about. We have conversations that started this morning about stigma and breaking down the stigmas of mental health and we need to continue those conversations this afternoon”. Speaking on the issue of depression, she stated “depression plus the complications that go along with that. Sleep disorders, anxiety, substance abuse, they're expecting sixteen million Americans today it's country. It chips away at our ability to work, to care for our loved ones, our relationships and our very sense of self-worth. Women experience depression and anxiety at twice the rate of men. Twice the rate and yet many women won’t seek help. If we do we think we're being selfish or we're going to take time away from our families, or we’re being weak. It’s not weak. Were often told tough it out, be resilient. Further elaborating on the issue stigma and mental health, “some well intention words cause us to become a prisoner of fear, of self-judgment and cause us to keep from reaching out. This is the very definition of stigma right. It’s negative that it can have and yet there is treatment. There is treatment and there is hope. 80% of people who seek treatment for depression see improvement, 80%. And so how do we bridge the gap? How do we get from here to there? Stigma drives silence and silence drives stigma. It's only like being vocal, by speaking up, by not being silent that we can open the doors for others so that they can come into the light and seek help. So I'm asking you today to find your words, find your words and help others find theirs”.
Vanessa Danniel from Groundswell Action Fund powerfully explained the importance of gender, racial equity and inclusion saying “As I look out on this crowd of every gender and every hue I know in my bones that the kind of America that I want to live in is one where all of us are free to be whole in our humanity.
Selena Vasquez, from Planned Parenthood LA one call to action pertaining to reproductive health. She requested “the one call to action is that we have right now we invest in our youth. We do that every day in Los Angeles by way of one of our programs called The Peer Advocates Program. These are the leaders in our communities that are making change every single day around reproductive health care and justice and all of the issues that we care so deeply about right now".
Jennifer Torez a former teen peer advocate spoke on having the outlet of Planned Parenthood LA. She expressed “growing-up there is no space to talk about sex, sex health, reproductive health. Reproductive justice was not---no one talked about that. So in my sophomore year I became involved with peer advocate program at my high school King Drew Magnet. I became a peer advocate and ever since then I’ve continued to advocate for my community, advocate for myself. She continued “obviously I love Planned Parenthood because they build a bridge between community and health care access for the fight for reproductive justice. As a peer advocate I’ve been taught and I’ve been trained to be an educator on giving comprehensive sex health, nonjudgmental information, reliable information which is very important. And in essence our duty is to empower those who don’t feel that they have a voice”.
Speaking on sexual violence Tarana Burke founder of #MeToo and Girlf for Gender Equity. She asserted “What will history say about us in this moment? I believe that we are entering a period of answers. 2017 asked -When will it be time for a reckoning around sexual violence?” 2018 said "Now". 2017 asked "Who will speak for the children?" and then 2018 the children said "We will". The fact is we have the answers right here, right now. We are the answers. Women from all walks of life across the gender spectrum, race, class spectrum, we have the answers.
The afternoon culminated with keynote speaker, and former first lady of the U.S Michelle Obama, who’s call to action was “we've got a lot of work to do before we're focused on the “Who”. Cause we're the “Who”. We are the answer. All of here in the room are the answer to our own problems, it is not finding the one right person that we think can save us from ourselves. It’s us. So we got to do that work internally”.
"Patient centered care is achievable; it might be difficult but it is attainable. Nurses have to go in and say, this is the reason I came into this business, to make a difference in my patients lives" Joy Chin, BSN, RN.
I make sure patients paperwork are in order, ensuring patient don't cancel on the day of surgery, so if they need any kind of clearance i.e cardiac clearance that's where I come in and make sure all of that is taken care of. Now usually when my patients come in, we have a little office which is kind of nice that because you get to sit down with a patient face to face. When patients come in to who are having their procedure, firstly, you want to make sure that patients know why their there. Question; Why are you having this surgery? Did you have a second opinion? Did your doctor explain the procedure to you when you first met him or her?
It's important to make sure that the doctor is talking to the patient not a medical assistant, or event a nurse practitioner or a physician assistant should not be explaining the procedure to the patient the first time. The surgeon should be the one talking to the patent because they are the ones performing the procedures. I ensure that the patient is aware of what's going on, we ask questions about after surgery.
Where are your recovering? If the individual is having a joint replacement; Are you going to have rehabilitation? Are you going to have someone coming to your home for rehab? That's important, you want to find out if the patient lives alone. If the patient lives alone and their going home that same day, they can't go home by themselves. That needs to be told to the doctor. Questioning, did you arrange for the patient to have a 23 hour observation? Is the patient going to have a family member coming in from out of state etc.
Most of the time patients are not prepared due to time restraint when their in the doctor’s office. Patients are and I’m sorry to say this but they are kind of (treated) like an assembly line. Basically in the office a medical assistant might come in and talk to the patient, here's your PAT pre-admission testing appointment and they will fill you in. When the patient arrives they are like “can you explain this procedure to me” at which point we’re like no, the surgeon is the one doing the cutting.
We’re not doing a procedure. We’re just making sure, that you’re cleared and that no hiccups will occur on the day of surgery. Usually the patient has to be redirected back to the surgeon’s office or we’re actually being advocate for the patient doctor, and saying “Ms. Smith is still not sure why she's having this procedure, she don't know what type of procedure it will be. Are you going to make an incision, or is it going to be laparoscopic, what are you doing? This patient needs additional teaching. We then have to send the patient back to the office, mostly, their very close. Sometimes, we call a shuttle for the patient to be transported from the hospital back to the doctor’s office.
It's always about getting to the core; Do you know what you’re having? Do you know what’s happening? The patient will then respond “Well the doctor says that I need this surgery”. To which we respond, we need to know what do you think, do you think you need this surgery, do you, did you get a second opinion. We have talk to our patients, we have to build a rapport. We have to make sure the patient feels comfortable, provide a safe and secure, non-judgmental environment for the patient.
When you do that, you'll hear a lot of stuff that you didn't even ask but you’ll find out. You’ll find out that M.s Smith lost her husband a month ago, but no one knew. Then she lost her insurance, and now she's not even taking her medication because she doesn't have insurance to pay for it. Therefore, its not that the patient is being non compliant on purpose, the patient is just not being helped. Finding out, get to the core, listen to the patient.
The majority of nurses, when we come into our profession. We’re coming into our profession with this positive idealistic mindset. Saying we’re going to do good for our patients, we will make an positive impact, and make a difference in their lives. You get on the unit you have barriers. Barriers such as time restraint, we’re always pressed for time.
The nurse to patient ratio is very high, you have six patient to a nurse etc. Clinician face situations with excessive charting, double charting, you’re putting the same information in different places. They do say if it's not documented it didn't happen, however, if its documented once why do we need to have it in three different places? Documentation, high patient ratio, press for time are some of the barriers that I can think of and I’m sure they are more.
Patient centered care is achievable, it might be difficult but it is attainable. Nurses have to go in and say “this is the reason I came into this business, to make a difference in my patients lives. Therefore I’m going to set goals; even If I set goals to meet two patients needs that day. It's better than meeting non. If I go on and make small changes like make eye contact.
For example, I will touch my patient, I’m NOT going in with the computer and talk to the computer while I’m talking to my patient. I’m going to listen to what my patient is saying. I’m going to turn and then and say I hear you I feel your pain, how are you feeling this morning, how are you coping? Is there anything I can do to make your visit much more pleasant? Its about how we attack our day, When we come in and say, I know all of this is happening around me but this is what I’m going to for my patient.
There are different ways of inquiring about social determinants of health. Finding out where the patient lives, how is the patient living condition at home, is the patient having difficulty providing, funds to obtain their medication? How about food, are they able to provide for themselves? Will they have to use the money that they will be buying their medication to buy food and pay their rent? This is how you find out these things, by communicating with your patient and inquiring about where, the need is lacking.
Social service, case management at work I usually try to always get a consult. Not by discharge, but try to get that ahead of time. By the time of the hospitalization so that they can figure out where the patient will need help. Inquiring about basic needs, family member, neighbors that can help. We just need to facilitate the line between where this patient is coming from and meet this patient at their level, at their preference.
We need to treat the patient to how they can adopt to the healthcare. Not like, okay you’re supposed to be meeting us at this level, so I’m sorry. No, that's not what we’re supposed to be helping patients by asking them how we can be beneficial to them. Getting the patient involved in their decision making, can you share how you would like us to take care of you? What will help in your condition. Finding out where the patient is at.
When the patient comes in and they have a wall up, almost saying, you’re the nurse I’m the patient, and you think I don't know about myself but I do. You a s a nurse is basically going to say, Ms. Smith tell me about yourself. Patients do not want you in their face telling them, this is what you need to do, this is how it's going to be. Instead, do you prefer to have your treatment, in the middle because you tend to be up in the middle of the day?
How can we work around that to make everything goes smoothly for you”? Do to prefer to go to physical therapy, mid day because your arthritis acts up in the morning?” Or the nurse should be talking to the physical therapist, asking what time they will arrive to tend to Ms. smith. Should we medicate her 30-45 minutes before she goes to physical therapy?
If the patient knows that you’re willing to work with them and meet them at their level. i/e non-judgmental environment, you have to be able to provide that for them. I try to encourage my patients to ask a lot of questions. The department that I’m in, I encourage a lot of questions, because patients tend to say “the doctor said this is how it's supposed to be so that's it.I say question the doctor, don't be afraid to question the doctor, If you don't feel comfortable within yourself ask is this the only choice that I have or do I have a second choice? Do I have to have this surgery now? Can it be delayed, can I have conservative therapy, before actually going into surgery. They will meet you at your level. Have your list, bring it with you to the doctor’s office, and check off questions as they are answered.Don't leave that office, do not leave that office, do not get up out that chair until all of your questions are answered. I try to empower my patients, exposing, we're not trying to cripple you, when you leave and go back to your pre-existing hospitalization state, we're not going to be there with you. I want you to be equipped with this tool. So that when you encourage additional healthcare services you are able to interact and feel at ease with what you have on board.