Sam's Diagnosis

Rheumatoid Arthritis- “is an autoimmune disease in which the body’s immune system… mistakenly attacks the joints. This creates inflammation that causes the tissue that lines the inside of joints to thicken, resulting in swelling and pain in and around the joints…if inflammation goes unchecked, it can damage cartilage… as well as the bones themselves… joints can become loose, unstable, painful and lose their mobility. Joint deformity can also occur” (Arthritis Foundation).

Lupus- “is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body)… [it can] cause inflammation, pain, and damage in various parts of the body… in lupus, the immune system is overactive” (LFA).

Raynaud’s disease- “causes some areas of your body— such as your fingers and toes— to feel numb and cold in response to cold temperatures or stress…for most people [it] isn’t disabling, but can affect quality of life” (Mayo Clinic).


Sam

“I was diagnosed in my sophomore year of undergrad. My pinky and index fingers were about triple the size that they are now and I thought ok maybe I jammed them during rehearsal. They were really big and weird for a long time and then the swelling in my pinky finger went down, but my index finger was humongous. My mom said ‘let’s go get you some x-rays to see if you did something’ and I got the X-rays done but there was nothing wrong with my bones. So they suggested getting a full blood panel to see if it was an infection or something, and that’s when the R.A. factor came back for the first time.”

“After that I went to a Rheumatoid Arthritis specialist immediately because my parents were like ‘she’s so young, why is this coming on so strong and so fast? Why haven’t we known about it before, she gets blood-work all the time.’ My mom’s fear was that I would be diagnosed with lupus right then and there, and they only tested me for one strain of the autoimmune disease which came back negative, so that was great!”

“When I was 18, I was officially diagnosed with RA, then I started taking medication, and Raynaud’s syndrome, which I believe a lot of people have— it’s a circulation thing. It came back as well and after that I was taking drugs and nothing was helping so we switched me once I moved here. So that was about 2 years of not dealing with the proper treatment, but once I was here the doctor looked at my file and was like ‘it’s clear that you have R.A., that’s a non-negotiable thing, but what I don’t understand is your symptoms are textbook lupus— you have the finger swelling, that is the telltale sign for R.A. but besides that you have every other swelling of lupus.”

Signs of Lupus

While Sam's lupus doesn't manifest with the characteristic butterfly-shaped face rash, she experiences many of the other symptoms listed here

“We did a full panel again, a ton of blood, I think 13 vials, I almost passed out. They were looking for connective tissue disease which, as it’s been explained to me, can mask what you really have with another diagnosis or can give you symptoms of both when you’re really dealing with two different things. It came back positive so I was officially diagnosed with R.A., Raynaud’s, connective tissue disease and mild lupus.”

“I’m on lupus medication for the most part… my doctor is saying if she likes the results of that then she is correct in her diagnosis and it is lupus but the connective tissue disease is telling my body it’s something else. My body is trying to fight the lupus on its own because R.A. has a hyperactive immune system where lupus has an under-active immune system, so my body is constantly at war with itself.”

“They put me on a blood thinner to get my circulation better and a really low dose of Plaquinol to start because I don’t want anything too invasive because of the side effects which are bad a lot of the time. Being an actor and having to use my body all the time, I can’t be throwing up for 2 hours a day, it’s not a thing I can do. They told me to see a physical therapist for some exercises I could do on my own which helped because then the swelling decreased.”

I was looking at 9 to 11 pills a day...

“The swelling went down but I wasn’t feeling better in terms of lethargy and really low energy levels, so we started me on a tablet. When I went to her the first time, the way she likes to work in terms of injectables is to leave it as a second plan. They did X-Rays of every joint where I have confirmed R.A. or lupus to see if there is any damage. It came back saying that I have very minimal damage in all my fingers and toes. The only place where I have damage is my knees, but they can’t tell if that’s from dance or R.A. so my doctor didn’t want to jump to conclusion so we won’t go injectables for now because if you do you have to go to the hospital once a month and that’s not something I can do. They put me on two pills right away and they were not working. I get my blood drawn every month to see where my levels are and they were going up on that medication. The doctor would like my levels to either stay the same or go down, but they were climbing so we had to do a more invasive thing. I had to take 2 anti-inflammatory pills a day, two Plaquinols, 2 sulfasalazine tablets a day, 2 blood thinners and 1 pain pill as needed- which I was taking every day. So I was looking at anywhere between 9 and 11 pills a day…but last month I went in for a checkup and she said my levels have gone so far down they are calling it remission.”

“I had to pick a female doctor because as a woman who potentially wants children, it was really important to me. A lot of the time you can’t get pregnant on these medications and really shouldn’t get pregnant while taking them. She told me at the first appointment that it could be impossible to get pregnant because I’d be extremely high risk and in and out of the hospital all the time. I’d have to stop the medication completely which my body isn’t ready for and right now all the medications are working together with my body trying to not kill itself from the inside out and especially if you put a foreign thing inside my body would rebel against whatever it is.”

“She asked me— ‘what are your short term and long term fears with this diagnosis?’ I said ‘it’s the same fear, that I can’t do what I love to do every goddamn day. Because you’re telling me that the thing I’m supposed to trust, my body, doesn’t work anymore? Unacceptable. Unacceptable.’ I was mad, I was depressed and it pissed me off. How dare my body do this thing to me. My body is one of two things I have as an actor, the other is my voice. My doctor told me that she would do everything in her power to make sure that my fear doesn’t become a reality.”

That thing I’m supposed to trust, my body, doesn’t work anymore?

“On the earlier treatment I would have to leave physical warmup early sometimes because I was so nauseous from the medication that I couldn’t do what everyone else was doing. The medication made me dizzy to the point that even eating and drinking water didn’t help. The room was constantly spinning which made me anxious to work. I would get up and do the scene if I needed to but I constantly had the thought in the back of my head that I was going to pass out, so my work wasn’t what it should be because of the constant fear.”

“I’ve used two absences in school because of flare-ups and during my summer program I was in a constant state of flare so I used 3 absences out of an 8-week program…I’d wake up stiff, the room would be spinning, then I’d try to eat something and I’d feel like I was going to throw up. In class we would do a lot of work with sticks and small finger movements and I just couldn’t do it. There are days where I can’t grab the sticks and keep my arms up for that long. As a ballerina when I was a kid, I kept my arms up there for hours, so for me now, not being able to keep my arms up for 2 minutes is really frustrating.”

Raynaud's

This graphic shows the 3 stages that Sam's hands will go through when she is having a flare-up of Raynaud's

“My teacher Andre, his response to it was probably the most shocking for me. He’s the most sensitive human being when you get to know him, last semester I missed a part of our tech rehearsal because myself, Amy and Alex ran a 5k for R.A. awareness. We did the run and he didn't know that I had R.A., but like the school knows and I had a meeting with the faculty to tell them, but I guess he just didn't really know what R.A meant and he didn't look it up. Kinda like unless I see it manifest I won’t do anything about it. So I was talking to him after the run and he said ‘I looked up what R.A. means after you missed tech to see what this is and for someone so young and positive and so energetic and such a wonderful person inside and out, I don’t understand why God did this to you.’ When he found out I was in remission he cried.”

“Most of my teachers forget I have anything because I don’t let it affect my work, unless it’s a physical issue. If I’m just having a down day, or a lethargic day, I try to put it aside, but on the days where I feel really dizzy and sick they know and understand.”

R.A. is a genetic thing…my grandpa had a thyroid issue, it changed to R.A. in my parents, and then its lupus and R.A. in me.”

“I’m 24 years old, in terms of people who get diagnosed I’m on the very young end of the spectrum. Most people don’t find out that they have R.A. until they are 40.”

“Last year when I found out I have lupus on top of the R.A., I was devastated. It was like a new diagnosis, which for anybody is really hard, and my doctor used a little too much information. Hearing potential long term issues was really scary, especially by myself— my mom couldn’t make it to that appointment— but one of my roommates Ana had a cake made for me, and in my pill box she put a Reses Pieces in for each pill I had to take. It was the sweetest thing, she has been with me through thick and thin.”

I don’t understand why God did this to you...

“I remember the day I came back to school after the diagnosis; my friend Tiffany hugged me and I just broke down, because when you get all that information, the first point of contact you just collapse and that’s what happened.”

“The rallying behind me by my classmates was just amazing. When I realized how much support I really had was when I decided to run the 5K. I raised $3000 on my own, it was just me not a big team, and my parents ran it, my sister and her roommate, Amy, Alex, my dad’s entire side of the family, and my mom’s side donated. My classmates donated and my teachers and that means more to me than anything. They are part of the journey with me. I think the only person who has ever gotten frustrated with me, is my sister because I had a flare up when I went to visit her and I don’t get to see her often…but after I explained the medication is why I feel sick and don’t want to go out, she said ‘oh that would be like me telling you I can’t go out because I’m having an anxiety attack,’ so for a lot of people I have to equate it to something else because it’s such a foreign thing.”

“A few years ago my grandfather had breast cancer so I was very active in breast cancer awareness. I did flash mobs, and I did run for a cure, because having a grandfather with breast cancer is so rare I just had to tell people. This needs to get out there, people need to know that men can have it too. My work with those activities got me involved in other advocacy activities…It’s been really inspiring to see people at these runs with their support systems and everyone has been really supportive of me and all my fundraising.”

“I went to a support group in Summit for women in particular, where they spoke about different medications and my mom and I sat there and my mom was crying the whole time. She kept saying ‘I can’t believe my kid is going through this,’ they were how I got involved in the Jingle Bell Run. I did my own research on where the money goes and all the money goes towards juveniles and young adults who cannot afford the medication and treatments they need. I am beyond thankful for my parents having the ability to take care of me, in the sense of being able to afford my doctors and pills. I don’t ever see bills, they just do it because it’s for me and they don’t want me to worry about it because it’s not something I can control.”