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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Rosemary Graham - phaware® interview 405

Feb 28, 2023

Pulmonary hypertension and lupus patient, Rosemary Graham details her 39 year history navigating multiple rare disorders and  the importance of her faith, self-care and never giving up.

My name is Rosemary Graham. I live in Atlanta, Georgia. I have been diagnosed with pulmonary hypertension since 2012. Before that, I was diagnosed with lupus and interstitial lung disease in 1984. Then, in 1985 was diagnosis with polymyositis or myositis, which they're now terming as lupus myositis. I am acquainted with the pulmonary hypertension group because I am a patient. I had a right heart catheterization done last year and my numbers were back up to stage 3. 

In terms of how I got pulmonary hypertension, it was around Christmastime and I had gone to see my rheumatologist. I wasn't feeling good that day. I knew something wasn't right. My breathing was off and everything was off that day and I was slightly dizzy. He and I used to joke around with each other and he listened to my heart and all of a sudden he had a puzzled look on his face. So he checked to the back. He went to the front. He went to the back. He went to the front again. He went to the back again, checking my heart and lungs and chest and everything. When he sat down, he started typing and he looked up at me and he said, "Either you have congestive heart failure or you might have pulmonary hypertension. I need for you when you leave this office, to contact your cardiologist and contact your pulmonologist as soon as possible." Walking to the car, I was calling the pulmonologist's office. I had an appointment the following week. They did a stress test. They did several tests. My pulmonologist came in and I did not know but he was also a pulmonary hypertension specialist. He did a right heart catheterization. I was at stage 3 with pulmonary hypertension.

He immediately put me on medication. I had to increase my oxygen flow. I had to increase my oxygen level up to 8 liters. I have had a myriad of problems. I would say right now probably about between 10 and 11 disorders, everything flowing back to lupus. The pulmonary hypertension came about because of the pulmonary fibrosis or it came from the lupus. The pulmonary fibrosis came from the lupus with interstitial lung disease. My lupus however, is in remission. Praise God, for right now. 

This month marks the beginning of my diagnosis of lupus in February 39 years ago. I had bronchitis to two months where I'd had nothing till a diagnosis of double pneumonia. Then, from double pneumonia I did not get better. I ended up with the diagnosis of lupus and interstitial lung disease. So I have been dealing with chronic illnesses for 39 years.

I've also had cancer. I was diagnosed with endometrial cancer in 2017. I had surgery in January of 2018. It was stage 1, grade 1. The surgery only took maybe less than two hours, but I ended up in ICU after that because of the oxygen and my blood pressure and there was something else that was going down fast. But I knew that I would end up in ICU. I have a friend who is one of my church members who's a nurse that actually worked at that hospital. She was able to get off that day and be with me. So she was watching them do the surgery. She helped me get undressed to prepare me for the surgery. Then when the doctor came and told my cousin and her that they had put me in ICU, she'd take out her badge and she came into the ICU unit just checking to make sure that everything was going okay.

I am single. I am not married. I do not have any children. My parents are deceased. My dad died in '85. My mother died in 2005. I don't have any siblings. All of my aunts and uncles are gone. So now it's just the cousins. So it’s me taking care of me and Jesus. It's Jesus taking care of me. It has been a long road. I have had many blessings, even in spite of what's going on. But in the beginning when I was diagnosed with lupus, I dealt with clinical depression. I am taking an antidepressant right now because I have been dealing with depression. The emotional effects of having a chronic illness for 39 years is now starting to wear on me a little bit in terms of taking medications and seeing doctors and going for lab tests, having blood drawn, but it has also been a blessing.

I was involved in a disability ministry for 24 years. I just retired. I was doing that part-time, working with pastors and leaders on the needs of people with disabilities. It's been a challenge. It has been a challenge. There are days I only allow myself a couple of minutes or a couple of days to be in the pit, but now I challenge myself. I read scripture, listen to inspirational music, look at inspirational videos or listening to sermons or motivational speeches or anything that will uplift me in a very certain way. For those of us that are dealing with rare disorders, I think it's even more of a challenge because of the medications we have to take because of the side effects that come along with those medications. Also, the uncertainty of the disease and whether or not it's progressive and what stage are you in. Even in terms of how you get your rest, your energy levels in terms of how much you get engaged in society, in terms of how much you engage with your family. Whether or not you and most importantly, you taking care of you is the most important thing. Self-care for a patient with rare disorders is a must. 

I have gone through that where my self-care was not good and I was depressed. You may or may not know, depression can cause pain and inflammation and pain and inflammation can cause depression. Finding ways to overcome that, finding ways to step away from that and look for a glimmer, a spark, is what I reach for or grab for. I'm probably sure the other people that have pulmonary hypertension could say the exact same thing. You have to have something that will keep you going. 

I would say don't give up. I can actually hear somebody saying that's what you're saying, but I feel like I can't take no more. I've seen that. I've heard that, I've said that several times. God, I can't take no more. But somewhere in the midst of that though, and that's why I say, you have to have a foundation that can hold you up when you get that low. My faith really did help me. Whether or not you are a Christian or not, you have to have something, a foundation. When you get that low you can say no, there's still something left that I can do. 

When I was diagnosed with lupus and I lost my job, I lost my apartment. I lost a lot of things when I was diagnosed with lupus in '84. I did not know what I was going to do. Because I was connected to a church, the pastor and the members helped me find a house and the pastor actually said, "You know, we don't have a church secretary, so why don't you be our church secretary?" That's where I had a little money coming in. I did go and get all my resources I possibly could until the Lord opened up the door for me to start working as a regional disability ministry director.

I also got involved with the Lupus Foundation. I was a volunteer. I did everything from health fairs to talking to businesses and corporations about lupus. I ended up on the Board of Directors of the Lupus Foundation. I ended up on the Board of Directors for the National Black Women's Health Project. I ended up on the Board of Directors for the Black Women's Health Studies that is still going on between Boston and Howard Universities. I ended up on an advisory committee with Jimmy Carter back in the day. So I became very active in spite of the challenges. We say there is life after lupus so I would say to my friends that there is life after PH. There's life after that. But I will not in any way negate the hardness, the absolute sometimes horror of this disease and other diseases like this that are rare that can take us down quick. 

My name is Rosemary Graham and I am aware that I'm rare.

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