Health Equity in Uncertain Times
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I am so thankful to Nara for bringing awareness to Lupus and how your skin can be showing you signs of other things happening in your body! At the end of the day, please advocate for yourself and give your doctor(s) as much information as possible about any/all symptoms so they can help you ❤️ 🎥: @Nara Smith #lupus #lupusawareness #lupusflare #dermatologist
Research words we’re not allowed to say anymore if we want federal grant funding: “vaccine hesitancy.” @matthewfacciani
Some of us lived with lupus symptoms for years before getting answers. We were told it was stress. Hormones. All in our heads. But these “normal” signs weren’t normal at all—they were signals from our body that something deeper was going on. Fatigue that didn’t go away. Joint pain that came and went. Rashes. Hair loss. Flares. Things we were taught to push through. I created this carousel because I want you to know: You’re not crazy. You’re not dramatic. You’re not alone. If your body is speaking—trust it. Ask questions. Keep asking. This Lupus Awareness Month, I’m sharing stories that look like ours. So we can catch lupus sooner. So we can heal with community. So we can plan from truth, not survival mode. Tag someone who needs to see this. . . . Follow @lupusspeaks for more advocacy, real talk, and planning support for chronic illness warriors. #LupusAwarenessMonth #ChronicallyPlanned #LupusWarrior #SpoonieSupport #lupuscommunity #chronicillness #chronicallyplanned
[Clinical trials] give women a chance to help other women and yes, you're taking a chance but the care you receive in a trial is excellent.
End-of-life and financial support are not talked about enough. After so much financial investment in a loved one with mBC, you realize how much debt has been accumulated over time.
I feel like I cannot catch a break. I am battling with my bone metastasis, my lymphedema, my diabetes, and my idiopathic hypertension. I am at doctor appointments three days out of the week (sometimes even Saturdays and Sundays when I get scans)...
I create a relationship of respect. I felt judged by a provider for questioning a test, so I left them. I suggest schedule changes and choose when I need a treatment break. I make it clear I need to understand what’s going on, and that my life is important.
Receiving mBC treatment takes a lot out of me mentally and physically. Being responsible for my medication and scheduled infusions is important. To manage my medications and my treatment, I make sure I have an appointment calendar reminder that allows me to see how my month will be.
People don’t understand what mBC is, and they think it means automatic death. Right from the beginning, I thought I was going to die. I have had many challenges throughout this journey. Arthritis and treatment side effects take away from how I can manage motherhood. My children keep me grounded.
I was having really bad side effects from my meds. I learned from my support groups that I could ask to lower the dosage or change the schedule, so I did. She tells me, ‘I am the breast specialist here and I know how this medicine should be taken!’ It made me feel small, and I did not push the subject again.
I want support groups to be a place to uplift each other, but also vent. We are dealing with a life-threatening disease that isn’t always positive or pretty. There are groups that have resource pages, while others have discussion boards. A good combination of everything would be ideal and very helpful to our MBC community.
The one thing that bothers me is the lack of affordable dental coverage, and I wish someone had told me about the importance of consistent dental check-ups before all of the decay. Fixing my smile would make me whole again. I really don’t feel as confident. It’s a constant reminder of my disease and the long-term journey I have.
mBC caused my DVT, lymphedema, and high blood pressure. I take my blood pressure fairly regularly...I can be forgetful, but handle my medications well by tracking my off and on weeks with the chemo pill. The rest of my medications I take at the same time. I have them all re-filled on the same day of the month, which helps track them.
For the past two and a half years, I have become an advocate and caregiver for my mom, initially helping with her diagnosis and maneuvering the medical system. As time went on, I attend doctors' appointments, make sure she has her medication, and make treatment choices. The process of caretaking has been exhausting, tiresome, and long.
🚨 Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants not yet publicly announced, sources told The Sick Times. While other aspects of the vast RECOVER program — including its clinical trials initiative — remain in place for now, its overall status is uncertain as the Trump administration targets COVID-19 and Long COVID research. Researchers in this field are facing a climate of fear and uncertainty. Read more from Betsy Ladyzhets and Miles Griffis (@confettiwesterns) at the link in our bio. ID: Jay Bhattacharya, the newly-confirmed director of the NIH, during his confirmation hearing on March 5, 2025. The text reads, “The Sick Times. RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive. By Betsy Ladyzhets and Miles W. Griffis.” The following slides feature quotes from the story at The Sick Times.
I am so thankful to Nara for bringing awareness to Lupus and how your skin can be showing you signs of other things happening in your body! At the end of the day, please advocate for yourself and give your doctor(s) as much information as possible about any/all symptoms so they can help you ❤️ 🎥: @Nara Smith #lupus #lupusawareness #lupusflare #dermatologist
Research words we’re not allowed to say anymore if we want federal grant funding: “vaccine hesitancy.” @matthewfacciani
Some of us lived with lupus symptoms for years before getting answers. We were told it was stress. Hormones. All in our heads. But these “normal” signs weren’t normal at all—they were signals from our body that something deeper was going on. Fatigue that didn’t go away. Joint pain that came and went. Rashes. Hair loss. Flares. Things we were taught to push through. I created this carousel because I want you to know: You’re not crazy. You’re not dramatic. You’re not alone. If your body is speaking—trust it. Ask questions. Keep asking. This Lupus Awareness Month, I’m sharing stories that look like ours. So we can catch lupus sooner. So we can heal with community. So we can plan from truth, not survival mode. Tag someone who needs to see this. . . . Follow @lupusspeaks for more advocacy, real talk, and planning support for chronic illness warriors. #LupusAwarenessMonth #ChronicallyPlanned #LupusWarrior #SpoonieSupport #lupuscommunity #chronicillness #chronicallyplanned
[Clinical trials] give women a chance to help other women and yes, you're taking a chance but the care you receive in a trial is excellent.
End-of-life and financial support are not talked about enough. After so much financial investment in a loved one with mBC, you realize how much debt has been accumulated over time.
I feel like I cannot catch a break. I am battling with my bone metastasis, my lymphedema, my diabetes, and my idiopathic hypertension. I am at doctor appointments three days out of the week (sometimes even Saturdays and Sundays when I get scans)...
I create a relationship of respect. I felt judged by a provider for questioning a test, so I left them. I suggest schedule changes and choose when I need a treatment break. I make it clear I need to understand what’s going on, and that my life is important.
Receiving mBC treatment takes a lot out of me mentally and physically. Being responsible for my medication and scheduled infusions is important. To manage my medications and my treatment, I make sure I have an appointment calendar reminder that allows me to see how my month will be.
People don’t understand what mBC is, and they think it means automatic death. Right from the beginning, I thought I was going to die. I have had many challenges throughout this journey. Arthritis and treatment side effects take away from how I can manage motherhood. My children keep me grounded.
I was having really bad side effects from my meds. I learned from my support groups that I could ask to lower the dosage or change the schedule, so I did. She tells me, ‘I am the breast specialist here and I know how this medicine should be taken!’ It made me feel small, and I did not push the subject again.
I want support groups to be a place to uplift each other, but also vent. We are dealing with a life-threatening disease that isn’t always positive or pretty. There are groups that have resource pages, while others have discussion boards. A good combination of everything would be ideal and very helpful to our MBC community.
The one thing that bothers me is the lack of affordable dental coverage, and I wish someone had told me about the importance of consistent dental check-ups before all of the decay. Fixing my smile would make me whole again. I really don’t feel as confident. It’s a constant reminder of my disease and the long-term journey I have.
mBC caused my DVT, lymphedema, and high blood pressure. I take my blood pressure fairly regularly...I can be forgetful, but handle my medications well by tracking my off and on weeks with the chemo pill. The rest of my medications I take at the same time. I have them all re-filled on the same day of the month, which helps track them.
For the past two and a half years, I have become an advocate and caregiver for my mom, initially helping with her diagnosis and maneuvering the medical system. As time went on, I attend doctors' appointments, make sure she has her medication, and make treatment choices. The process of caretaking has been exhausting, tiresome, and long.
🚨 Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants not yet publicly announced, sources told The Sick Times. While other aspects of the vast RECOVER program — including its clinical trials initiative — remain in place for now, its overall status is uncertain as the Trump administration targets COVID-19 and Long COVID research. Researchers in this field are facing a climate of fear and uncertainty. Read more from Betsy Ladyzhets and Miles Griffis (@confettiwesterns) at the link in our bio. ID: Jay Bhattacharya, the newly-confirmed director of the NIH, during his confirmation hearing on March 5, 2025. The text reads, “The Sick Times. RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive. By Betsy Ladyzhets and Miles W. Griffis.” The following slides feature quotes from the story at The Sick Times.