Portland, Oregon (United States)
Scleroderma Stories Issue 3
Please introduce yourself
I’m from California (the Bay Area), but I live in Portland, Oregon. I have a service dog named Coco, and I have been diagnosed with scleroderma since 2008. It affects my joints, so I have a lot of mobility and range of motion issues. But I’m still pretty active because I do adaptive sports. I like watching sports and comedy. I enjoy boxing, basketball, and football – both pro and college.
What adaptive sports do you do?
I actually played college basketball and did some track. Then, scleroderma took that away because you need to have control of your whole body to play sports, or at least to play the able-bodied sports. I was no longer able to play those, but I did switch over to adaptive ski. It’s hard because when it’s a sport, you grow up and play it. You love it. You’re good at it. You want to be able to play all the time.
But luckily, I was able to find a hobby, a sport still, such as skiing and table tennis to fulfill that void and still get a sense of activity, recreation, and such. I think I was trying to fill that void and find another physical activity to replace it. It’d be like if you were a pianist, and then you were able to do another instrument. It may not be the same, but you’re still able to make noise.
And I do some movement activities – sometimes yoga or boxing, actually. I don’t actually fight, but I do punching just to keep my body moving. I think there are around 26 paralympic sports, and I’ve probably tried all of them. Or at least 25. I had to do something. I was losing my mind not working or going to school. There was a point where I did water aerobics three times a week. In addition to boxing, I did lameca (Filipino stick fighting) one day of the week. Then I do pilates and yoga. That was my life for a while.
I think water aerobics is probably the most effective of everything I did. There’s resistance, but not too much. It can hold you up. So water aerobics was definitely key. I recommend water aerobics to a lot of people, especially as you need to get out or you gotta get your body going.
When were you diagnosed with scleroderma?
I was 25. Well, I had it two years prior, which was my last year in college, but it didn’t get diagnosed. I was having mobility issues, and then over the next two years with different doctors, we started trying to figure out what was going on. Then, a couple of months after I turned 25, finally we got it right.
The very first symptom I had was acid reflux from GERD, but I didn’t pay attention to it because I was just eating a lot of food. I was still thin: 6’6” and about 200 lbs, so I wasn’t big. I tried to eat a lot of food to gain weight. So, when I had acid reflux, the reaction was just, “Oh, cut back on your food.”
I also had Raynaud’s. I had problems reaching in the freezer. It got real bad, to where I didn’t even want to go in the freezer. And at least for me, when you don’t know why you can’t reach into the freezer, I was thinking, “Well, it’s got to be me. What’s wrong with me?” I just dealt with that issue, but what actually really got me to the doctor’s was basketball. I still played basketball at the time, but I had problems shooting. I was telling my doctor that something was wrong. I was like, “I can’t shoot the ball the same… I don’t have the endurance…”
I started taking pilates and all these other exercise classes, like yoga. Anything you could think of that’s full body and mind, I was taking it. It wasn’t working, so I finally decided, “Okay, this is beyond me now.” I went into the doctor’s one day and said, “Something’s absolutely wrong, and we’ve got to figure this out.” It was right when I said, “Look, my shoulders are tight,” that she put all of the appointments that I’d been going to together and said, “Okay, I think this is what it is.”
She brought in her colleague, and they started doing that test where they grab your skin on different parts of your body. Eventually, she decided, “Yeah, this is it.”
How did you react to the diagnosis?
I actually didn’t take it as serious as I should have, and that’s most likely because I hadn’t heard of scleroderma. The ironic part of why it wouldn’t even make sense that I didn’t take it seriously is that the head rheumatologist came in. They talked, and he told me I wouldn’t play basketball or work probation anymore (I was working juvenile probation at the time). He said, “I suggest you get health insurance because your life is about to change.”
I kind of just looked at them. I took them seriously, but not too seriously. I had never heard of scleroderma, so I just thought “all right, okay.” He begged me for months to get concerned, but I still was busier paying off student loans.
Why do you think you didn’t take the diagnosis seriously?
There was nothing other than tightness in my shoulder that made me think anything was going to get worse. So, I didn’t really follow up for a couple months. I just thought, “Ah, I’ll get over it.” He didn’t show me pictures, and I couldn’t find stuff online at the time.
When it comes to rare diseases or anything that isn’t a common conversation, information just wasn’t available on the internet back then. You would find stuff, but you’d have to dig more into research. Now, I obviously can type in the words and get everything. But at the time, it was just the Scleroderma Foundation and the average demographics, where they’d say older Caucasian women. I really wasn’t worried about it. I didn’t see anything that made me think I would fit in so quickly.
It’s a lot to take in. I had that fighter mentality, as an athlete, that helped. There were a lot of reasons why I didn’t take it as seriously. I think it was more because I had never heard of it, and he didn’t say I was going to die. If he would have mentioned something like “You’re going to lose an arm” or “Your heart’s going to fail,” I think I would have. But he never said what was going to happen. It just sounded like he was taking the two things that I’d done a lot, which was work and play basketball, and just saying that I won’t be able to do those.
At the time, I was thinking, well maybe it’s because my shoulders would be hurting or tight. I didn’t know they would do what they have done; it became where I couldn’t even use them much. I just thought, “Maybe I’ll have problems doing it, but that won’t mean I won’t have a basic, normal life, quote unquote.”
Was there a specific moment when you realized the seriousness?
The day I took it seriously was the day the head rheumatologist called me and said, “I’m going to give you my house number. You tell me when you get health concerns.” That’s exactly when I knew.
A doctor doesn’t just give you his phone number. I wasn’t even his patient; he was the head rheumatologist. Maybe he figured I needed some trigger words. He said, “I’m going to give you my house number. You have to call me.” I realized that there was something beyond what I was thinking of. That’s when I really said I’ve got to get help. Within about a week or two, I went to a library to research scleroderma, called the Scleroderma Foundation, went to a support group…
I wish I remembered his name. I would love to call him and say, “Man, you were so right.” But, unfortunately, I forgot his name.
How did you feel in the time shortly before and after your diagnosis?
That last year was tough because I didn’t know what was going on. My doctor had originally said it was rheumatoid arthritis. She just said, “you can’t really do much, but I’m going to give you medication, so just work around it.”
If that’s all you think is what’s going on, you just think, “Man, this thing is tearing me up.” But then, just having the doctor that stayed on me about getting insurance and taking care of myself and then, really, the medical team helped me. It’s important to have a medical team that you work well with. It’s important to have doctors who actually listen to you if you want to talk.
What is your relationship with your medical team like?
My doctors recommend procedures and medication, but they also know I’m not going to do it just because they said to. A lot of times with my rheumatologist, when we meet, she knows I’m coming with some research. She has hers, and we’ll discuss it. We’ll flip back and forth.
We’ll discuss if it’s a great option and what the risks are. We know the pros are supposed to be good, but we talk more about the risks. She knows that, yes, I want my shoulders better, but I’m not going to do some random surgery that could possibly go wrong. I would always say that the medical team and a large support team is important.
How did your condition develop after your diagnosis?
From 2008 to about 2011, my mobility started to slow down. I was starting to get the internal issues, like the scarring.
I had real bad acid reflux, to the point where I haven’t laid flat to sleep probably since 2009. It was that bad, even with medication. I also had stomach ulcers. That was probably one of the hardest things because I confused it with the acid reflux, but it actually burns holes in your body. That probably made me lose the most weight. I dropped 30 lbs in a couple of months. 6’6”, 200 lbs is already skinny, but to lose that 30 was real bad. I was also anemic.
I had finished college in Oregon, gone back home and gotten diagnosed in the Bay Area, then moved back to Oregon because of my work and health. Again, the doctor in Oregon was telling me it was more serious than I was taking it. She said, “Look, you gotta take care of these issues.” She did the same thing. She called me one day. The first time, she said she needed me to take the day off and go get some labs or something.
I didn’t listen to her, but at that time, I was starting to faint just walking maybe 15 or 20 feet. I started having that issue in the shower, where I wouldn’t last in the shower long. I got a chair just because I couldn’t stand up.
She called me later that day while I was on my way to work and said, “We got you a bed at the ER.” I just said, “ER??” I never even knew they could order a room for you at the ER. She told me I was at risk for a heart attack. My reaction was, “Well, let me go to my job and tell him this is what’s going on.” But she told me, “I don’t even think you should be driving. You need to pull over and call an ambulance.” Those were the first couple of issues.
Then all of a sudden in 2011 and 2012, I started getting very physical issues.
My fingers contracted, and so did my knees, my hips… all of my joints except my feet. My feet stayed fine, but my skin was so tight. You could see it pull from my thigh up to my chest. I couldn’t open my mouth maybe more than four popsicle sticks. My elbows contracted. My shoulders subluxed – which means partially dislocated, so it was like still on the joint, but kind of off. It happened to both shoulders; anything that happened to one side happened to the other. Anything that contracted on my left side did on my right as well. My fingers are all contracted, but my thumb and pinkies are dislocated on both hands. My elbows do not straighten either. They go probably a little past 90 degrees. I also lost more weight. In March 2012, I remember getting stuck on the bed and thinking I couldn’t get off. I thought I would have to jump off or roll off. That was probably when it was at its very worst. I could barely move.
In January, I could reach on top of the freezer, even though it was a struggle. By March, I even couldn’t reach inside of the refrigerator. At that point, I was starting to load up the sides of the doors or not put anything in the fridge.
How did you adjust to the changes in your mobility?
Back then, I didn’t know about the adaptive stuff that I’ve put all over my apartment recently. At that time, navigating yourself and without the internet, you don’t know all of this. Some of this information probably existed online, but who’s telling you, right?
A lot of the physical or occupational therapists didn’t say anything. They didn’t ask, “How are you getting in your refrigerator?” Occupational therapists do think about activities of daily living, but at the time, I didn’t know I could get home occupational therapy. Even though I was able to get out of the house, I really wasn’t safe outside of the house.
And I didn’t know that somebody should have said, “Hey, what’s it like living in your apartment by yourself? Are you able to do these things?” No one really mentioned it. I just started doing stuff alone. It was pretty tough, but I was learning everything because I’m just someone that’s going to figure it out.
What was the hardest symptom?
Have you gotten more used to your lack of mobility over time?
Could you share more about your stem cell transplant experience?
How did scleroderma impact your ability to work?
Did scleroderma affect your confidence?
Did you have a lot of support from the people around you?
How has the pandemic impacted your life?
What are your goals or dreams?
What helps you stay motivated?
Could you please talk about your experience with support groups?
Did you enjoy the national conference?
Do you enjoy travel?
Is there anything else you wish you had done before your diagnosis?
What advice do you have for people with scleroderma or other chronic illnesses?
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