Ashley Elliott, The Road to Sobriety; A Call for Resources in Rural Communities to Combat Drug Usage, Stigma & Addiction.

"The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma. Get past the negativity of addiction and see it simply as what it is and that's a disease" Ashley Elliot.

 


Ashley’s Health Journey Through Addiction

My story more often than not, coincides with addiction. I am a recovering heroin addict. I've been clean since December 28th 2012 and since I've gotten clean I decided to take a path to help others whenever they're struggling. I know for me when I felt hopeless if it wasn't for the women in my life that had lifted me up I don't think I would have made it .

My goal is to help those find hope that think there's no hope. In my darkest days I would say I probably had no idea what was going on at any given time. I went from being an all honor student in my freshman and sophomore years of high school-- straight A's to slowly decreasing my workload. I was a merit student my junior year and by the time was a senior I was a general student. Luckily enough I still graduated with merit a diploma.

That was the start of the dark days that really just kind of involved drinking along with experimenting with a few different substances, nothing too extreme. By the time I had graduated high school I would consider myself pretty deep into my addiction not rock bottom but still pretty deep. What would happen over the next twelve years would be me finding my own, falling in love.

I always made the joke that heroin was my first love, it never failed me, it never let me down. Every time I wanted to do something it changed the way I felt, it did just that. After that point it was really weird. I went from using to needing and I don't remember it. I don't remember when I went from recreational use to addiction, to dependency.

I would go through several different treatment centers, methadone centers. I tried suboxone. I tried moving to California. I thought if I just packed my bags, leave and go somewhere else where nobody knew me I could just start over and be whoever I wanted to be. The problem with that is wherever you go there you are you know. At that time I didn't realize the problem was me. I thought it was the drugs. I was in two very abusive relationships. The first one was we were living in Nevada and he ended up head-butting me and breaking my nose in the front lawn of our home. Shortly after that I had ended up running into an old friend out in California. She saw me and I think I’d probably been about 140lbs at the time. My collar bones were sticking out, I was rather frail. She bought me a plane ticket and three days later I came home.

When I came home I just got involved with the same people. When I did that, that’s is when the legal stuff started happening. The first time I ever got I trouble I had actually lived right up the street. The apartment that I was living in got raided and that was the first time I had been arrested. After that point it was just one after another getting arrested. Eventually I tried to do it on my own. Got involved with another boyfriend who was rather abusive. Fast forward my first treatment center I decided to leave AA, which is against medical advice. My thought process was; I was going to leave, come home, use go to court and go to jail

I was okay with that. I thought that was a solid plan to me. That's how crazy the disease of addiction is. I did that, I left, I came home, I used, went to court and the judge said “Punish her to rehab”, which was not a part of my plan. Over the next two months I had to wait 30 days because I left AA. I had to wait another 30 days for a bed to open up. Within those two months the apartment I was living in had burned down. Under the Influence I had fallen asleep on my hand for an extended period of time which caused something called Saturday Night Palsy.

It’s where an addict or an alcoholic passes out on the extremity and does nerve damage. I had no use of my hand for over three months. I was an I.V. user and there was a point in time where a needle had broken off into my arm and I left it there for six years until I had gotten clean and got a straight head on and I had surgery to have that removed. My kidney functions are extremely low. The way they explained it to me is that my kidney function is that of a 70 year old. I think that's due to all of the different opioids and the wear and tear on the body.

Emotional Health and Addiction

A big part of the health effects is the emotional state that people wanders in while being in addiction---I'm a very outgoing person and I can talk to just about anyone, anywhere about anything. When I was using, I was afraid to leave my house. I'd lived less than two or three hundred yards from a grocery store and it took everything inside of me to get up, get myself dressed to go to the grocery store just because my anxiety levels were so high. A lot of people use to try and escape their feelings of depression or anxiety.

In reality the only thing it does is increase this. I was going through panic attacks, and a lot of the different medications. I was having on medication induced seizures. I just think of it I felt like my body just couldn't go anymore. My sister pointed it out the most. The way that my family always knew I was using, was how much I weighed because I would get her periods of extreme weight loss while using and then gaining that back while attempting to get clean. The health effects I had have lasting effects, psychologically, physically, and emotionally. It takes a long time to heal all that stuff, to accept it, deal with it and move forward with it.

Finding a Support System in a Sponsor

I do honestly say that without my sponsorship family I don't think I would still be clean today. When I went into treatment the first thing I told my counselor was “I'm going to tell you I want to go home, not to let me go home. Don’t let me go home”. But she didn’t, she relocated me to a halfway house down in Frederick Maryland. While you're in treatment it's basically almost like a brainwash. I’ll say if I needed to be brainwashed to get away from whatever I was doing before I was totally okay with it. I really got involved in a twelve step program. It took me about six months after I was really involved in the program to be clean.

The reason that is like I said look for my clean is December 28, 2012. This was the first year I was down in Frederick, I was my first Christmas. I remember I was getting ready to come home and my sponsor and I had come up with this plan where I stay at my sister's, she's my safe zone. No contact with old friends or ex’s. I didn't do anything she suggested. When I went home I think the first thing I did was contact my ex. he brought my dog over. My sister's kids were so I ended up staying at my parents which I ended up using, so I'd used all over Christmas. It was December 27th, my best friend and my sponsorship family called me to wish me a Merry Christmas. I thought what we had was just a normal conversation. When I got off the phone probably less than five minutes later my sponsor called me and trying to walk me through my thought process.

I had my dog which meant I saw my ex, I was at my parents which is not a good place for me. She was trying to get me to realize all the decisions I was making weren’t necessarily the best ones. The last thing she said to me was---she worked the night shift as a security guard at a prison and she said “I don't have to work tonight. I don't know if you want to white knuckle your way through this situation, but if you don't I'll come and get you”. I was kind of just like “Okay you know I'll think about it. I'll call you back”.

When I hung up the phone it was at that moment that I realize that these people that I barely knew six months really wanted nothing but the best for me. I think that was my reality check. I ended up calling her back and I said “Come get me”. My sponsor and my best friend drove three and a half hours from Frederick up to Garrett County in the middle of a snow storm to pick me up and take me back home. That’s why I consider the 28th my clean date because I haven’t used since. I don’t drink, I pretty much don’t do anything.

Trials During Recovery

Throughout my early recovery and my first year or two I remember a period where it was around my first year clean and they say in the twelve step program that at your anniversaries you start going crazy. That's what I was experiencing. It was around my first year I had no idea why but I just wanted to mess things up. You know I knew I couldn't quit my job because I needed my job. I liked my friends so I didn't want to screw anything up with them.

I just couldn't come up with anything to ruin, but that's all I was thinking about because I was an addict. A lot of times my first thought is self-destruction especially when I can’t deal with feelings whether they be good or bad. I remember texting both my sponsor and my best friend and telling them that everything I was doing was reminding me of using.

My best friend sent me this long message of all of the things she knew about me through my active addiction, including you know the abusive ex's and going to jail and all that stuff. Then she sent me another message of everything that we had done in recovery and now. I'm saying your first year of recovery I lived more than I did in those twelve years of using even though I went all over the place, California, Nevada etc.. I still didn't really experience anything because I was never present in the movement. When she sent that to me she followed it up with “Think about those two and then tell me if you still want to use”. I was living with my sponsor at the time, I’d gotten home and she told me to get dressed and I didn't know why, she didn't tell me. She just tell me to get dressed.

I got dressed and my grand sponsor, which was her sponsor showed up and they took me to a baseball game and made me sit there. I sat at this baseball game and I cried. I cried and I cried and I cried and my grand sponsor's theory was always “When you don't know what to do you sit on your hands”. That's what I did. I just had to sit through it and here I am at the Frederick baseball game, everyone’s having a heyday and I'm bawling because honestly I don't know why.

Situations like that, like if they weren't there for me in those moments, if I were to allow my own thought process to continue I eventually would have came up with the idea of the best solution right now is to go use. I strongly agree that a social support, an emotional support, it is a key component of recovery, you cant do it alone. It’s a lot easier when you have people who understand what you've been through.

Sobriety & Stigma from the Medical Setting to Society.

I know for me sometimes it's tough with my health issue trying to talk to a doctor and being taken seriously. I'm a recovering addict and once they hear that, the word human being goes out the window. It's definitely tough and sometimes you've got to have thick skin because there are some pretty mean people that have a very closed mind and aren't very understanding. I kind of just smile and nod at those people. It’s been six years since I entered my first treatment center and in two days I'll graduate from college. That's crazy to me to think back to where I was.

Sharing Story to Impact Change

I remember when I went to MedX to speak on a panel session. Standing outside and seeing the big sign that said Stanford University and I just thought to myself “How did I get here?” I didn't understand it was so weird. I do attribute it a lot of this to Regina Holliday. If Regina hadn't brought me to Cinderblocks, if she wouldn't have asked me to share my story, all of these other people wouldn’t have heard it and I wouldn’t have had the opportunities that I've had over the past year. I remember when I told my family what was wrong with me, what was wrong with me being addicted to drugs at that time.

It was suggested to me by my counselor at the treatment center that I was at. I was an outpatient methadone treatment center. I gather my family together granted my family is well known in the community. My brother in the department of juvenile justice for 20 years. He’s the Cub Scout leader. Everybody knows my brother, both my sisters, one’s a teacher an elementary school teacher and the other one is a guidance counselor secretary. You could definitely say I was the black sheep of the family and I remember when I told them they didn't understand because they didn't know and they didn't know anything about it.

Public Health, Education & Addiction

If people were more educated about addiction, what causes it. The interactions, the pharmacology between the different substances. How they affect the brain. Just stepping outside of their shoes and trying to look at it from a different perspective I think that would have a huge impact on things. A lot of people feel shame and guilt because of their addiction and are embarrassed to talk about it. One of the doctors on the panel at MedX said it best, for years addicts have been lepers. That's what we are once you have that label there's no turning back. Again, when people don't have that in mind, the empathy or compassion to understand, they don't get it.

It’s a fruitless battle. I definitely feel that education, knowledge, understanding simple human being decency is needed. Nobody deserves to die no matter what they choose to do or chose to do it, I hear that a lot. “They chose to use so they deserve to die”. I can speak from experience that there were many times I used against my own will. I did want to be doing what I was doing but I knew physically I couldn’t go on without it because I was dependent on it. In our twelve step program we say “Drugs aren't the issue. Drugs are side effects of addiction”. Our real problem is the way that we think and the way that we feel and not being able to cope with those things. It's exhausting and it's long it does take a lot of motivation. I would say self-will but that's really nothing at all one has to deal with.

A Call for Resources in Rural Communities.

Whenever I was using in this small town I had no idea about resources because it wasn't something people talked about. I remember going to treatment and going to my first twelve step program and they're like “You’ve never been to a meeting before?” and I had no idea what a meeting was. I didn't have the resources here. The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma.

Get past the negativity of addiction and see it simply as what it is and that's a disease. Much like a diabetic who takes their insulin every day, an addict get a daily reprieve by simply choosing not to use and more often than not when the addict that chooses not to use is a miracle. Because everything in my being says use, use, use and every day that I choose not to do that is a miracle and nothing short of that.


Ashley Elliott is a recovering addict, patient advocate, psychology major, guest speaker at Medicine X and repeated speaker at Regina Holliday’s Cinderblocks5

Contact Ashley Elliott: Twitter

Rob F. | HIV Saved My Life; Living With Chronic Illnesses & Navigating The Public Health System

"The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all" Rob F. 


Rob is a patient advocate living with type 2 diabetes, epilepsy, chronic asthma,  chronic environmental allergies, high blood pressure, a skin condition called ichthyosis and is also HIV positive.

I manage all these diseases with the help of medical assistance and I’m on SNAP. I have not had health insurance throughout life until I was diagnosed with HIV. Trying to get through those years prior to having insurance was a grind. I needed health care to hold the job, I needed to hold the job to get the insurance to get the health care. I was cycling through jobs every twenty days to eighty. I couldn't really keep anything. I tried my best to grind it out but I failed no matter what I did.
The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all? Any one of these diseases can kill me. Diabetes is the most diabolical things I ever have to deal with because it involves changing your entire life. Without a disease that had a lobby, without a disease that had a high profile, I would be dead. It shouldn't be that.

Coping with Chronic Diseases on the Public Healthcare System

Coping with those diseases on the public health care system is really difficult because a lot of those disease have specialists. Those specialists even within the same hospital system like I have, rarely talk to each other. Giving information back and forth to them is difficult and also they don't understand exactly what's going on in each other’s care. It’s like learning how to juggle six halls but it's from six different people. They all teach you how to juggle one ball back and forth. They don't understand the interplay between all six.
In my case asthma which is treated with steroids; steroids will up your blood sugar. The higher blood sugar goes lower your immune system goes. That works with HIV and makes my skin dry, also the lithiasis makes my skin dry and plate off. I'm constantly itchy. I constantly have an open wound somewhere. My skin integrity is almost never 100% and I’m possibly fighting an infection.Recently I just spent a week in hospital on IV antibiotics and was discharged to two more weeks of more antibiotics. This happens to me sometimes 2-3 times a year. It's not like optimist infection.

Unemployment, Social Security & Disability

I'm not eligible for social security disability. I’ve tried 3 times. Makes it really hard to work and keep a job because I can’t keep a job long enough to get the insurance. To get the health care I need to keep a job. If I try to work I lose my health benefits. If I work the health benefits I get may not cover everything I need to have covered. Currently I spend retail, insurance covers about $100,000 worth of prescription drugs in a year for me. My HIV meds alone are almost $2,000-$3,000 a month.
If I were to afford that myself I would have to go straight from the unemployment to Google which is not going to happen. Fixing that really is almost fixing the entire system. Employment is difficult right now for me because of the doctors' appointments I have to keep. I was actually told in a job interview that they thought their job was not a priority for me, that I would be too busy in doctor's appointments to give them 100% of my time. Which is true I do enjoy breathing and walking on dirt and not being buried under it.
So they're right but I don't think it's a really good reason to keep me out of a job.  Trying to go back to school and get educated, is difficult to do monetarily, education is expensive. It rises faster than inflation. I have a hard time with attention. Sometimes balancing all these prescription drugs several of them say may cause drowsiness or dizziness and darned if they're not right. Sometimes I can sleep 10, 12, 13 hours a day.
I don't need to, I barely made it here (#Cinderblocks5) this morning but I do what I have to do. If not for love of a good woman and a good support group like here at CinderBlocks I would not make it. I feel like it's important to let people know that there are people like me out there in the world. They’re falling through the cracks. Between disability and unemployment and being eligible for things like food stamps and medical assistance. I was uninsured until I was 38. When I was 38 I was diagnosed with HIV.
Then I was worth helping, then I could get the medical assistance, then I could treat my diabetes, epilepsy and everything that came after. All of those things were being managed by me in patch-work. I knew they were there and a lot of times I just had to either ignore them or just live with the consequences. It has certainly made things harder now. I would love to have a low blood sugar, but testing supplies cost money insulin oddly is available over the counter but needles aren't; i.e you would have to find a doctor who would give you a prescription for needles and tell them “look I may not be able to come back for six months to a year please load me up”.
If I can find one who would do that, I would do that. But even then, maybe two to three doses a day, no long acting insulin. Trying to figure out how that works, kinda wrecked my life. I spent 20 years that way and if you can't get any traction, can't get anything moving, you find yourself where I’m at. You’re 45, you’re sick, you want to do more with your life but who wants a 45 year old straight white dude with no education? My time I feel like it’s passed. This story is all I have now. I will tell it to anyone that can benefit from it. This system needs to change!

Support System

Its hard to find a good support system. I don't have family that I can rely on. I was an unwanted child. I survived an abortion attempt. I was born 1/20/1973, Rode V. Wade was passed 1/23/1973. My mother told me “3 Damn days” for most of my life. I had to look it up to find out what she meant. She tried to abort me. I have a scar on my forehead, that lit up like a Christmas tree during my first MRI procedure and that's because there were metal fragments in my forehead. She tried to hang me.
I can't trust my family, there's really nobody there. I have drifted in and out of relationships, places to be, and places to go. I finally found one good woman. She from England, her name is Victoria, she just graduated nursing school and she saw the good in me nobody else could. She plucked me out of a gutter 10 years ago, took care of me, made sure I took care of myself, that I was okay, helped me through my diagnosis period. Helped me get back to the doctor. Helped me realize that it was worth it.
Regina Holliday and The Walking Gallery
Four years ago, my friend Regina Holliday reached out to me and let me know that she had an advocacy group going, for patients by patients. She thought my story was worth telling. I came, I took part in a panel and something inside of me just let loose, I spilt my guts in front a room full of people. Most of my family, friends, don’t know anything about what I’m going through but it was received well. Regina kept asking me to come back and tell my story. I’ve try to find different avenues, tacts, ways that it affects me because I feel like I’m presenting in front of all of these talented wonderful people that are changing the world and I can’t even change my own life.
I’m an advocate for this patient. I wish I can be an advocate for more people in my position but I feel like I don't have much credibility of standing to help those people. That's what the world tells me. Without Cinderblocks, without these people behind me, letting me know that I’m important enough to be listened to, be heard, be interacted with I probably wouldn't have made it through the last 4-5 years.

Health Politics & Patient Advocacy

We’re in an age right now where healthcare is a big issue, drug prices are a big issue. Its a political issue now. Half of the politicians just see me as an easy vote. I vote for them or the other half will demonize me, call me a lazy and take away my benefits. Non of them address my issues. Non of them will help me, others like me or people who watching/reading this, with affordable healthcare affordable drug prices, and matching the world in efficacy of treatment.
We spend the most, over 3 trillion dollars a year in healthcare, we’re not even top 10 in results. We’re definitely not one of the happiest places to live. It's almost like justice in this country, you can have as much as you can afford. The only way that can change is for people like me, and the people here at Cinderblocks people like Regina, people like you watching/reading, to stand up and to tell your story and to tell what needs to be done in your own life and how that can be done for you. The more that we know about what's going on the more people may be motivated to try to change it.

Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

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.

Navigating Bureaucratic Insurance policies

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.

Living with chronic illness through early adulthood

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.

Arthritis, Surgeries and Resiliency

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.

Mental capability of Coping with Chronic Illnesses as a Child

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.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

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.

Advice to Chronically Ill Patients

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.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

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”.

Most Urgent Need in fixing Healthcare Today

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.

Transitioning from Patient to Patient Advocate

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.

A Wish for the Future of Healthcare

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!

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