THIS IS MY ILD STORY

Bill: After 59 years, I'm getting a glimpse of just how amazing she is. My brother lined me up with Bev. It was a blind date, and so I went to pick her up. I knocked on the door and her grandpa came to the door and he says…

Bev: By golly, it's the paper boy. And Bill had been their paper boy. So I fell in love at first sight. It took him a while.

Bill: I don't know if we had many more dates that summer or not, but when I went back to school in the fall and I looked over and I saw this girl there, I thought, my gosh. And I fell in love right there. And it was Bev.

Bev: We got married a year later. We've been married for 59 years and we're looking forward to 60.

Bill: What started with just two of us became three and then 10. And now we have three great-grandchildren.

Bev: Well, you know, it was an accident how they found out. He had a growth in his sternum and he was worried about it. And the doctor said he thought it was nothing. And Bill just had a sense that he should get that checked.

Bill: I insisted. I said, “You know, I am worried about it.” So he said, “Okay, I'm going to order a CT scan. We'll really take a look at it.”

Bev: That's when the doctor called him in and said, “I've got good news and bad news. The sternum growth is nothing, but there's a shadowing in your lower lobes and I think you need to see a pulmonologist.”

Bill: We went and had a consult with this pulmonologist who we'd never met before. And so he looked he listened to my lungs through the stethoscope and he says, “You know, Bill,” he said, “it's a classic example of idiopathic pulmonary fibrosis,” and I said, “What?”

Bev: It was completely unknown to us. We didn't get any information from the doctor, and he told us something really scary for me then. He said, “A lot of times our patients go along just fine for a long time and then they fall off a cliff.”

Bill: When you're married long enough, you begin to think alike. And so as the terror kind of kind of dressed itself over Bev, I kind of felt that and I kind of grabbed a hold of it for a little bit. But quite honestly, I just I was in denial and I don't want to hear it. I mean, I felt good. I looked okay. I felt strong. I had no symptoms of what he was talking about.

Bev: And so when he told us what it was and the statistics on on how long a person lived, that was like somebody hit us with a truck. It was really hard.

Bill: We looked at each other and our mouth just kind of dropped open and we were pretty much speechless. And, you know, we didn't we knew we weren't ready to hear that. At first, we were really filled with fear and I think confusion. And so the lesson that we learned was that we cannot let fear have a foothold. And I began to say, you know what? It's okay. You know, I'm okay.

Bev: He's so steadfast. He's been a good provider and takes care of me, has taken care of me for all these years. You know, I forget sometimes that he even has a disease. We wake up each day and live each day as what we want to do and what we can do. So we're just thankful for every day.

Bill: As we walk through this life journey with this IPF in the middle of the way, honestly, I could not have done that alone. I couldn't go on that journey all by myself.

Bev: When we got married we said our vows and for better or worse, richer, poorer and and we believed that then. And we believe it now. And but, gosh, we don't dwell on the worst. And don't let a disease like IPF, like Bill has, define who you are.

Vicky: I feel like my doctors have have been so important in the journey. I feel like I’ve picked the best team I could have, and I feel so good about that because I didn't just accept people that I didn't think were right for me.

Brittany: When I first got diagnosed with scleroderma I was actually told that I only had six months to live. So, it was heartbreaking. I felt really lost. And all I could think was, like, what I hadn't done yet, or what I ever wasn't going to be able to do because I was only 20. So, it was really, it was hard to hear that.

First I had the Raynaud’s for a year. Then all of a sudden I had like a dry cough. And then I had stiff joints and I had lost a lot of weight, so I thought that I had it already because I have a few family members with it. So, I went to the doctor’s and then that was where everything started. I went and saw like a school doctor. She sent me to a rheumatologist. I saw that rheumatologist and then I went right to UCLA. And so I was diagnosed very quickly, but my symptoms were also progressing rapidly. Like within a six-month period everything happened.

So, getting there was like the initial scare and then like overcoming was completely my family, my support system, and my doctors. And then just meeting others that had it because no matter how much you tell your family they're never gonna understand. So, meeting others that have the exact same disease as you, or even very different diseases, you understand what you're going through. That was a big deal.

So, the key is called the Giving Keys. Each key has a word and so the point is like someone buys you the key or you can buy yourself the key. But you get a word that you want to live by or that you feel that you need.

Breathe. Because I can't fully breathe. But I need to remember that like even some days just waking up and the fact that I can like breathe is enough.

Cheryl: You know, getting diagnosed with rare disease it’s just … I just have to put it to the side and just get myself together. And I remember my older sister, who is my caregiver, she said to me… “now what we’re going to do, we’re going to fight it.” Whenever I’m sick, she’s right there and she doesn’t let me feel sorry for myself. So it gives me the strength, the hope that I can fight this and get through this.

Charles: You have to find a doctor that is involved that really cares about what they're doing. They care about the results. They care about you as an individual, not just as a patient. So I try to encourage people to do that. Do your due diligence. You're your own best advocate.

Jim: When I was first diagnosed, it took like two and half maybe three years. I saw the pulmonologist and they sent me in and they did a bronchoscopy and then we did a follow-up—PFTs and stuff like that. And I had no improvement. And it showed a little bit of decline in lung function. So, they sent me months later to do a biopsy. The biopsy led me to a diagnosis of UIP. And then when I did a follow-up with the pulmonologist, it was discovered that his diagnosis was going to be IPF.

Diana: It scared me because the first thing—if you ever Google it—the first thing they say is three to five years. So that really scared me, and I didn't really want to find out anymore. But I knew that I had to because if I was going to be the caregiver and I was gonna help him get through this, then I needed to know more about the disease.

Jim: The idea was, you know, if you ever have any inkling of a doubt then maybe you should seek a second opinion and go to a Center of Excellence. So I went to a Center of Excellence and I had a second opinion done. And that's when we came down with the autoimmune category. Shortly afterwards—I mean, you know, I went to see a rheumatologist and he actually gave me the confirmation. It’s ILD and I still have pulmonary fibrosis and I still have some honeycombing. The RA was affecting my lungs too. My misconception was that RA only attacked the joints and the bones and all that. I had no earthly idea that it was attacking my inside organs too.

You know for me I had already seen and knew that this was not a good diagnosis and the prognosis was even worse. So, it's devastating for not only you but when I was in the room, my wife was in the room with me and the look in her eyes was terrible. You know, it's heartbreaking.

Diana: The hardest part is knowing that no matter what I do I can never fix it. So, to me that is the hardest. If you have, if he has a cold, I mean I can, I can fix that. What he has I cannot fix.

Jim: I really felt like I was on the clock. I mean, time is running out and I had all these things I still wanted to do. You know, so it's like, oh man, I'm getting cheated. I need to get busy, get out there, and see what's going on. We've always had this idea that we could go to the national parks and stop through the national parks at least when we get there and when we leave we can put a sticker on the jeep that says, “We Hiked It, We Liked It.” You know, and that was just something we've always wanted to do and we've managed to get all of that done in the last four or five years. We used to be able to hit the trail a lot harder than we do now but we still get on the trail.

Natalie: 2003, when I was diagnosed, the idea came up about being pregnant and it was all unknown. So the initial doctor said, “I don't know.” And he gave me a list of worst-case scenarios, and none of them were out of the realm of possibility. So it was definitely an unknown. But in the first five years of my illness, so many things were unknown.

So it was hard to say what could happen. And here we are. Multiple pregnancies later and three kids, healthy kids on this side of the earth. So we're good. So currently I have three children and an almost 14-year-old, a four-year-old boy, and a brand new three-month-old baby girl. You know, with my first daughter, I definitely stayed away from asking for help because I was too overwhelmed with my emotions. I was extremely anxious and extremely nervous, and it held me back.

Ten years later with my son I had learned more, I did more research, I've practiced more. And I was far more at ease. And I did ask for help. And then I just tried. And it worked. From my first baby and many years ago, in my early in my diagnosis, it was unheard of to really take five minutes for myself. I have learned this over the years with knowing other moms and having elder, wiser women in my life, and I absolutely take five minutes or more for myself, and I make it a strong point throughout the day. And once I learned that I needed to put myself first and find my own grounding, everything kind of fell into place.

Speaking to your kids about having a serious illness is important. My advice would always be to be honest with them. Sophia is curious about my health in ways that are far more grown up than need be. She asked questions of where I'm going to be 10 years from now and what we're going to do. What ifs, she gets very deep with me about what to do. Any child I've dealt with or known or has always been more worried about the unknown and the what ifs. And once you dispelled any sort of, you know, theories, they were like, wow, it really isn't that bad.

At this stage of the game I'm noticing that my teenager is coming forth with some emotions about having a mom who looks funny or whose hands are special. So I'm thinking we’re leaning toward she would like some anonymity from me, which comes with its own emotions we're working toward. It's all very emotional and very overwhelming at times that at every stage of motherhood and for all these kids that I can't just do anything easily. It's always going to come with a challenge.

There are many things that I can't do easily for my children. For my daughter I can't put her hair in a ponytail. For my son I can't play catch with him. For my next daughter I won't be able to do her hair either. But emotionally, there are many things they don’t tell you about being a parent, and it's just about being a parent and not even having an illness. So throw the illness in there and then, you know, and the kids come home with you to five doctor's appointments in a week. And that's another challenge. But again, I just go back to gratitude. I'm grateful that I have these challenges because it teaches me and my children to be better people.

Maryluz: I guess the biggest lesson I learned from having this disease is that you’re vulnerable. Something can happen and you have to live the every day as if it was the last day of your life. And I mean, every day is a gift. This condition for some reason has made me a better person, I think more sympathetic, empathetic, and and definitely a better human being.

Kheesa: Along my journey to find a diagnosis it was very frustrating because I knew that something was wrong with me and I was having trouble even getting doctors to believe that there was something wrong with me. My symptoms may have seemed minuscule to them, but they were very important to me. The fact that I have 200 pairs of shoes and change my shoes every day and I can't get my foot in them told me something is really wrong here.

My body hurts so bad that I can't sleep and when I'm tired I yawn and my jaws are tight and it hurts. I just kept getting dismissed and misdiagnosed and that wastes precious time. Finally, I said, “I need another doctor, refer me to somebody else.” That doctor said that they felt like something was going on, but they weren't sure what it was. They were going to send me for tests and she came back in the room and told me that all the tests were normal and she just couldn't figure out. And in despair I just threw my hands up. I said, “I don't know why no one is believing me.” My hands were purple and she looked at my hands and she got excited.

She said, “I know what that is. I know what that is. That's Raynaud's phenomenon. And this has to be something with arthritis.” So she referred me to a rheumatologist. He says that I'm presenting what looks like maybe lupus or arthritis, that he knows it's not either one, but maybe he can put me on some type of anti-inflammatory or something that'll help with the pain.

The doctor said, “Because you're on this medicine, I suggest that you don't get pregnant.” Two, three weeks later, I found out I was pregnant, so I had a high-risk pregnancy. And on June 21^st she came early at 34 weeks, but before I had the C-section, they had to put in a IV. But they kept sticking me in different spots and they couldn't get it in.

So I asked for another nurse and she put in the IV and she said, “Has anyone ever told you you had thick skin?” And I said, “No.” And she said, “Well, listen, it's very important that you go back and you tell your doctor I said that you have thick skin and see if that does anything.” And I did that. And the rheumatologist, he said, “Thick skin, I know what that is, I'll be right back.” And he ran out the room and he comes back with this giant medical book and he's flipping through real fast and he goes, “Look, look, you have scleroderma.” And I was like, “What?” He was like, “Oh, you have scleroderma.” And then, you know, the excitement turned into dismay when you find out that you can't fix it, but at least we can do something about it and move forward.

The first thing they did was all kinds of tests with my lungs, and the bronchoscopy showed that there was significant scar tissue damage. To know that the reason why I don't feel like getting off the couch or I don't feel like going to the grocery store is literally because I can't breathe. And that's what's causing me not to have the energy.

And then the fact that I had a brand new baby and I couldn't care for her the way that felt like she needed to be cared for, it was very depressing. Then I realized that it's been two years. I'm still here and I'm doing this because I do want to live and I'm going to. I am going to battle this disease, it’s not going to conquer me. So any time I introduce myself, I don't want to be a victim. I don't want your pity. I want you to know that, yes, I have this disease, but this does not define me.

Carolyn: The most challenging part of living with ILD and systemic scleroderma is, I will say there is a part of me that longs for my old life. There is a mourning period that you have to go through and acceptance, and it isn't necessarily something you go through once. I'm a very positive person most of the time, and and I try to be as energetic as possible; but I still think it's important to take time to grieve when you need to, because I think that's part of the acceptance.