Christine Haines Greenberg
Richmond, Virginia (United States)
CHRISTINE HAINES GREENBERG
Scleroderma Stories Issue 1
Could you please tell us about your journey?
I live in Richmond, Virginia, but I grew up in Germany as an Army brat. I came to Richmond for college in 2003 and have lived here ever since. I own a bridal shop and wedding planning company with my mom. I am married with a 3-year-old little boy and another little boy on the way (due in March).
Owning two businesses means I do not have a lot of time for hobbies, but I love spending time with my family, enjoying wine and trashy TV with my girlfriends, reading, and traveling.
I was diagnosed with scleroderma in 2013 when I was 28 years old. I have had Raynaud’s symptoms since 2010. Embarking on another pregnancy with scleroderma (and I am now showing signs of lupus in my blood) was scary, but I have a wonderful husband, parents, friend group, and team of doctors that support me.
I eat well, focusing on anti-inflammatory foods as much as possible, and keep my body as healthy as I can. I have mild lung damage but, thankfully, no other major symptoms (yet). My goal is to stay active with my doctors and stay positive with my outlook on things.
How did you feel after being diagnosed with scleroderma?
I was terrified. And angry. I felt like I would rather have cancer or something that can be battled. Many lose the battle with cancer, but at least they have a chance to have surgery or undergo chemotherapy/ radiation to try and combat it.
But, with time, you have to accept the reality and do what you can to keep pushing forward. We do not know how or when the disease will progress; controlling what I can and not worrying about the “what if/when” is all that I can do.
How have you made changes to your lifestyle or mindset?
I switched all of my medical care to one hospital system (a teaching hospital) so that all of my doctors (primary care, rheumatologist, OB/GYN, and pulmonologist) can all easily communicate with each other.
We have also had to adjust our household finances to prepare for large medical bills as I have breathing tests and a major CT lung scan annually. As a small business owner, I do not have reliable healthcare available to me. Luckily, my husband has a full-time job with a huge company, so I can rely on that for consistent insurance coverage. But, to not lose his job or switch companies abruptly is a heavy burden for my husband to bear.
We anticipate around $10,000 of out-of-pocket expenses to manage my scleroderma… and that is if it maintains the mild levels of lung damage and Raynaud’s issues in my fingers.
I have adjusted my diet to focus on the healing properties of fruits and vegetables. I try my best (without removing all joy from my life) to prioritize anti-inflammatory foods, herbal supplements, limiting meat, dairy, gluten, etc.
What medical workups/treatments have you had in addition to annual breathing tests and CT lung scans?
That is all I have done so far. I take a daily aspirin and medicine to hopefully keep the lupus at bay, but we are holding off on anything more aggressive until I am finished with this pregnancy.
What advice do you have for those with scleroderma or other chronic illnesses?
Don’t suffer in silence. I talk about my autoimmune diseases to spread awareness about invisible illnesses and to educate people, especially women, about paying attention to odd symptoms… don’t just chalk it up to getting older.
Be your own advocate, but do not let the disease define you. You still have a full life to live. Enjoy every bit of it!
There is no shame in having some bad days where you feel sorry for yourself. Take care of yourself on those days – eat the ice cream, watch the bad TV, whatever your guilty pleasures are. But you are more than your illness. Keep fighting, stay active in the research and support communities for your disease, and stay educated.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us